Updates on Nolan

Friday, September 15, 2006

a little background…

Kara went to UNC Hospital on Wednesday morning (Sept. 13th) after experiencing some bleeding. She was checked in to the Women’s Hospital and the bleeding stopped fairly quickly, but doctors were unsure of the cause. They gave steroids to the baby and monitored mom’s and baby’s vital signs. Over the next 24 plus hours, all vital signs looked good and there was no more bleeding. Baby continued to move vigorously!

The baby was 28 weeks old, though the weight was a bit behind what would be expected at that age. The weight, combined with the unexplained bleeding and a finding that the blood flow from the placenta wasn’t ideal (”absent end-diastolic flow” for the docs in the audience), made it clear that the baby probably wasn’t getting everything needed. The doctors predicted that at some point in the next few days, a crisis would force a Cesarean delivery. They were right. Thursday night, after a fair amount of discussion about when or whether to schedule a C-section, the question was rendered moot when the baby’s heartrate started fluctuating and the doctors rushed Kara into surgery.

The surgery went very well and Ronan was able to be with Kara during the delivery. At 9:26pm on Thursday, September 14th, Kara and Ronan’s baby was born! Ronan had the chance to have his finger clamped by a very tiny hand before the little one was wrapped in plastic and whisked to the Neonatal Intensive Care Unit (NICU). Because the baby was so young, they were more concerned with basic health checks, getting oxygen to the baby and bundling warmly than determining gender (it takes a bit more investigation in a premature baby), so the little one earned the nickname “Little Critter” until the legal name could be unveiled after the gender was verified. Happily, the Apgar score was good, and the baby was vigorous and appeared quite healthy. The birth weight was 1lb, 2oz and the length at birth was 11 inches.

Little Critter will stay in the NICU under intense monitoring and amazing hands-on care until it is time to go home. We’re still learning a lot about the course of treatment for a baby this young, but the rule of thumb we’ve been given is that the baby will stay at the hospital until roughly the original due date (in this case, early December), give or take a few weeks. Babies born at 28 weeks in a hospital that can deliver advanced care (like UNC) have really good odds of leaving the hospital in excellent condition, but there are certainly a number of complications that can arise and we’re just beginning to learn about those. [As a sidenote, the steroids that baby got on Wednesday morning should be a big help here. They essentially give the lungs a boost equivalent to an extra week of development. Ideally, delivery would have waited a full 48 hours from the time the steroids were administered in order to get their peak effect, but 36 hours is pretty good!]

The excellent news is that UNC has an amazing number of specialists who deal with these problems everyday; the bad news is that there are so many of them that it takes quite a while to get all the information to the family. We may not always be able to answer questions (even ones that seem simple!) but we can see quite clearly that Little Critter is getting very skilled care and that’s the most important thing right now.

The news about what to expect with the newest family member will unfold over weeks and months, and that’s why we’re setting up this blog to share information as it becomes available. Please check back as often as you can, and share the ups and downs of the journey with us. Kara and Ronan will especially appreciate your comments, so share the love! It means so much to have a strong and supportive community lifting us up. Thank you for being there.

-Maria (Kara’s sister)

picture!

The NICU has very strict rules about visiting, so not many of you will have the opportunity to see in person how beautiful this little one is in the next few months. Here is a picture to give you an idea.

Sunday, September 17, 2006

Nolan LaRue Ikenberry Peterson

We finally have confirmation that Little Critter is a boy.  Drumroll, please…  His name is Nolan LaRue Ikenberry Peterson.

the first 72 hours

The NICU staff told us early on that the first 72 hours were a very critical period. Those hours weren’t without their ups and downs, but Nolan made it through, and even closed it up on a high note! We’ll take every bit of good news we can get.

The primary concern of the day was Nolan’s CO2 exchange, which wasn’t good. There were some tricks with the ventilator that eventually led to an upturn with the CO2 situation. It’s not back to where they’d like it to be, but it’s not declining anymore, so we’re pleased with that.

There are other tests and evaluations ongoing always, but the good news is that there are many systems they can definitely say are doing well. Urine output is good, blood pressure is good…

They have had to draw blood for various tests over the last few days, and we’ve learned that even a small blood draw takes a lot of blood out of our pint-sized baby, who doesn’t have much to spare. They’ve had to do blood transfusions to keep the blood volume up (not unusual in this situation). As I understand it, an infant of this size has only about 10 teaspoons of blood in his body!

That’s the last of the news for the evening…

-Maria

Monday, September 18, 2006

update on mom & dad

Kara will be discharged from the hospital later today, so she and Ronan will be heading home again for a happy reunion with the dogs.  They may be spending a lot of time at the hospital.  Once they’ve had a chance to settle in, we’ll try to update here about when they’ll be rested enough for visitors.

Food for them is covered for the next week.  If you want to join in the food brigade, Kirsten has organized that so far: kwkrueger2003(at)yahoo.com.

Monday, September 18th

Today Nolan’s “tent” was removed. This is a milestone marking the end of the first 72 hours — the tent is a plastic box over the bed that preserves a humid environment, presumably to help Nolan transition from the womb to the world. It’s removed after 72 hours. They do keep a heat lamp on him to keep him toasty warm. (The NICU is a much warmer place than the rest of the hospital!)

Nolan looks good and is squirming around. His CO2 numbers remain stable, which is great.

The family is camped out in the waiting room of the sixth floor of the women’s hospital, where Kara is staying. It’s a nice waiting room and we’ll be sorry not to have it once Kara leaves the hospital today. We’ve rearranged the furniture so we can all sit together, and there’s a fridge where we can keep food for Kara and Ronan and ourselves. Ronan’s parents, Susan and Robert, have come from the mountains, and his brother Shannon flew in from Salt Lake City last week once he heard what was happening. On Kara’s side of the family, we have her parents, Carolyn and Lynn, and her sister Maria (me) and sister’s partner Deb, all camped out in the waiting room with Ronan’s family. Kara’s brother David and his family visit as much as they can.

We are really feeling the rollercoaster of emotions today. There is so little information and what information there is, is hard to interpret because it typically boils down to “this finding correlates with this outcome to some degree, but we really won’t know for XXX time.” Yesterday was hard because the CO2 situation meant they might have to put Nolan on a bigger, more powerful ventilator, and our gut tells us that increasing equipment is a bad thing. When they didn’t have to put him on the bigger ventilator, we all felt relieved and relaxed somewhat. Today, we have gotten the results of the brain ultrasound, which showed a grade 4 bleed in the right side of Nolan’s brain. That correlates with an increased risk of developmental disabilities and cerebral palsy, though we really don’t know to what degree the risk increases. We were pretty wiped out after getting that news.

As far as the bleed goes, it is hard to say what it means exactly. It is of course a concern, because every problem complicates the picture and adds more stress to Nolan’s whole system. Cerebral hemorrhage is graded from one to four, with one being minor. The fact that the bleeding is on only one side of the brain is good. It is possible that the bleeding will spread to the other side, so we are praying that won’t happen. They will do another ultrasound in a week or so to check the status. The bleeding will resolve on its own at some point and there isn’t anything they can do to hasten the process. That means that knowing the status of the bleed doesn’t change anything about treatment. The main thing we look to is what the brain looks like after the bleeding has resolved. That’s not a question that will be answered in the short term, as I understand it.

More information will be posted as it is available…

-Maria

settling in to home

Kara was discharged from the hospital tonight (Monday) and went home for some quality dog love and (we hope) some quality sleep. It was nice for her to be in the hospital because it made it very easy to visit Nolan while still having private space, so it isn’t entirely good to be leaving. However, it’s really hard to get a good night of sleep in the hospital, so we hope that’s one thing that will improve now that they’re home. They live about three miles from the hospital, but traffic and parking are a pain so it isn’t quite as easy to just stop by for a visit as we would like.

Ronan’s parents, Susan and Robert, had to return home today also. Please keep them in your thoughts and prayers, as it is very hard to be far away, unable to visit, give a hug, or just sit with Kara and Ronan. The rest of the family will miss them, too, as they were a strong, calm, steady, loving presence in the waiting room with us.

Tuesday, September 19, 2006

Tuesday, September 19th

Today we are trying to figure out what to do with ourselves now that we can’t convene at the hospital as easily. (The NICU waiting room is not a comfortable place to be for a long time.) Spending long days in the hospital isn’t fun, but it does give you a place to be together and a way to get information as it is available.

Today the news is good. They’ve begun the slow process of weaning Nolan off the ventilator. They started by reducing the tidal volume a little bit. Today they will also start feeding him a bit of Kara’s milk by tube, which will help him get the many benefits of breast milk. Yay!

He looks good, and especially stylish because he has a glowing fiberoptic blanket under him and blue lights over him to treat jaundice/excess bilirubin (a common problem). He wears a mask to protect his eyes from the light therapy. And, he has a glowing red foot! (I’m not sure what it is, but I’m guessing it is some kind of sensor.)

Wednesday, September 20, 2006

update from ronan, nolan’s daddy

i just wanted everyone to know that nolan is stable, he is slowly being weaned off the ventilator, his weight is up and drumroll please, kara held him for the first time today, in kangaroo care position which is flat on her chest. thank you everyone for your thoughts and prayers and keeping the love generation.

Kara and Nolan kangarooing for the first time!

Here’s a picture of Kara holding Nolan!

Thursday, September 21, 2006

more about kangaroo care

I wanted to share a little bit more about kangaroo care for those who don’t know anything about it. It’s pretty neat stuff!

Kangaroo care involves placing the baby in skin-to-skin contact with the parent (most research has been done on kangaroo care with mom, but dads can do it, too). Baby wears only a diaper and maybe a hat, and is placed on his stomach on mom’s stomach, with his head sideways between her breasts so he can hear her heartbeat. They then get wrapped together to keep baby’s outside warm.

Kangaroo care “originated” (I know, it’s more like “back to what we used to do”) in Bogota, Columbia in 1983 when some doctors tried it because they simply didn’t have enough equipment, beds, whatever, to keep babies warm. They had moms hold babies in kangaroo position pretty much non-stop as a kind of emergency measure, and discovered that infant mortality dropped very significantly and the babies were able to go home dramatically faster! It has since been adopted by many NICUs in the US and elsewhere, and studies have been done that mostly support these amazing results.

In some ways, it seems self-evident that having mom and baby together would be good for baby, but the cool thing is the specifics of why it’s good, and how that goes against some basic preemie care rules (like, reducing movement and transfers of baby as much as possible because those cause baby to work much harder to stay stable). Here are some of the things that happen with kangaroo care:

• temperature synchrony: mom and baby regulate each other’s temperature. When baby gets cold, mom’s chest temperature goes up to compensate. Apparently it works in reverse, too, though I imagine mom can do a pretty good job of regulating her own temperature.
• improved breastfeeding: the close contact increases mom’s milk letdown and babies are much more likely to begin breastfeeding spontaneously.
• respiration and heart rate improvements: doctors, nurses and parents have noticed decreased apnea episodes, decrease in ventilator oxygen requirements, decrease in brachycardia episodes, and a more stable heart rate.
• more restful sleep: we can all relate to the importance of that one!
• more rapid weight gain: possibly because of the more restful sleep, which allows conservation of calories
• faster discharge: many babies are discharged significantly faster
• parents benefit, too: the NICU can feel like a very powerless place for many parents, and kangaroo care allows parents to take a very important role in the care of their baby. Plus, obviously, you get to hold your baby!

Just so you know, I’ve gotten most of this information off the internet. It’s probably not all exactly right, but I think it’s not too far off, either. Here are some sites that talk about it if you want to read more:

• Wikipedia
• Midwifery Today
• Prematurity.org

Pretty nifty, huh?

-Maria

Another Blessedly Stable Day

Today was another in what we hope is a continuous succession of stable days.  Although we are assured of more ups and downs.  Doctors and nurses on rounds this morning said they were very pleased with Nolan’s state at the moment.  He is still being weaned off the ventilator, little by little, and they may take out one of the lines (a PAL (?) line i think)  which would give them the ability to give Nolan some more nutrients and such to help him to start growing and putting on weight.  He was down 30 grams today, to 470, but the docs assure us that his weight will continue to fluctuate.  He still seems to be tolerating Kara’s milk, which he gets about 30cc a day, i think that’s the correct number, i know they keep telling us it is a tiny amount for his tiny gut.  And any amount of mother’s milk is golden for Nolan now.  One last little observation: Nolan looks like a little fuzzy frog when he is laying on his belly.

happy one week birthday!

Today Nolan is one week old! It’s an amazing milestone. It’s hard to believe that he’s already a week old; at the same time, it’s hard to believe that only a week has passed. For family members, all of our lives are so very different today than they were a week ago. Emotionally, spiritually, physically, socially… it’s amazing how much you can change in just one week. Our days have a radically different tempo to them. People have appeared out of the woodwork to offer love and support. It’s been quite a journey for the extended family, and that only begins to touch what it has been for Kara and Ronan.

In celebration of the first week of Nolan’s life, I’ve pulled together a photo gallery. Not only can you look at all the pictures of Nolan’s life, but you can send pictures directly to Shutterfly for online printing, or download pictures to your computer. You can always get to it from the “photo album” link in the menu to the left. You can also get to it by clicking on any of the thumbnail pictures in the posts here. I’ll post a few of my favorites tonight.

Here’s Nolan’s uncle Shannon, sharing an anti-jaundice light bath with Nolan. The fabulous drawing was given to Nolan by his cousin Logan, and hangs at the foot of his bed. (To me, the drawing says “Small? I’m not small! You’re just big!”) Sadly, Shannon had to return to Utah today. We’ll miss him a lot and hope that he and his wife Amy will be able to visit again soon.

I love this picture of Nolan holding a finger (mom’s? dad’s? I’m not sure.) He’s on his glowing anti-jaundice blanket which makes him super-stylin’. That thing on his head is the mask they use to cover his eyes from the blue overhead light. Mostly, I just love how beautiful he looks holding his parent’s finger. “Small? I’m not small, I’m just reminding you how amazing life is.”

Happy first week, Nolan! Yours is the happiest 1-week celebration I can imagine being a part of!

love,
aunt maymay

Saturday, September 23, 2006

belated update for Friday and Saturday

I’m sorry that we didn’t get an update on the site yesterday. I know it’s a bit nervewracking to be without information for so long. Even though I’m doing a lot of the updating, I still check the site constantly in case someone has written a comment or has had a chance to update. We really appreciate every comment that has been left, and knowing that so many people around the world are thinking of Nolan all the time.

I don’t have a lot of information to update you with, but I’ll give it my best shot. Yesterday, Nolan’s CO2 exchange became an issue again. One particular blood gas reading was up about as high as they are comfortable with, then went back down close to normal, then back up again. Today it remains high, and they are looking to other options to help Nolan. One option is steroids, and another is a high frequency oscillating ventilator. I don’t have any details about either of these options, but I wanted to share where we’re at right now. Tonight, Nolan can use your prayers and love more than ever, so please share everything you’ve got.

Thank you,
Maria

a bit more information on the ventilator

We’ve all left the hospital for the night, and I have a little more information now than I did at the last post. The problem with the CO2 seems to be only one part of the problem with Nolan’s lungs. He is building up too much CO2, presumably because his lungs are not expelling enough after each breath. However, it is also the case that his lungs aren’t strong enough to handle the ventilator. I believe they’ve moved the vent back up to full volume, which puts a lot of pressure on his lungs every time it inflates them. It essentially scars them, potentially creating a lot of severe long-term respiratory problems.

The oscillating ventilator would resolve at least the first problem and possibly the second problem. The way I understand it works is that it keeps the lungs inflated all the time and gives lots of quick small puffs. Kara said that it would breath out for him as well, unlike a traditional ventilator which just puts air in the lungs and relies on the natural “collapse” of the lungs to push air back out. Nolan’s lungs aren’t pliable enough to push that air back out on their own. The oscillating ventilator would get it out for him, and I think that by keeping the lungs inflated and having to use less forceful pressure, it would injure his lungs less. Of course, there’s a drawback, or they would have put him on it a long time ago. Apparently it vibrates in order to do its job. The vibrations pose a real risk to the fragile blood vessels in Nolan’s brain. As long as the bleeding stays in one side of the brain, there’s a reasonable chance that the other side of his brain will be able to compensate for any damage done. Using the oscillating ventilator would increase the risk of bleeding on the other side. (Here is the original post about the bleed.)

The steroids would help the lungs grow, which could help them begin to push air back out as well as resist injury. However, the steroids are associated with marked increased risk of cerebral palsy and mental retardation, so they don’t come without problems, either.

They will do another blood gas check at midnight tonight, and if the CO2 is not looking better, they will try the oscillating ventilator.

Pray tonight for Nolan’s lungs and blood vessels to be stronger than they seem and to mature quickly. Hold Kara and Ronan in your thoughts as they try to make sense of so much inconclusive information.

Thanks for all your support,
Maria

Sunday, September 24, 2006

Sunday, After the Doctors’ Rounds

It seems that the oscillator is helping ventilate Nolan, it is helping his CO2 exchange and his heart rate is maintaining stability.  These are the positive aspects of the oscillator.  The docs are concerned that they are having to maintain a very high pressure to get Nolans lungs to inflate.  This is one of the negatives.  They are trying to wean him from the pressure.  Things are evolving, unfolding and we will keep yall posted.  Keep us near to you. Thank you.

Tuesday, September 26, 2006

Monday’s update

This update covers yesterday only, so it’s already old news. Sorry about that, but I don’t yet have any news for today and I wanted to go ahead and get something up on the site.

Sunday night was a very rough night for Nolan. Kara and Ronan stayed at the hospital all night because they were very concerned about Nolan (they did sleep, but they wanted to be close by so they didn’t go home). As I understand it, the primary concern through the night was Nolan’s sensitivity to environmental stimulation.

Oxygen saturation in the blood is a marker for the immediate effects of stimulation to a baby and how well he’s tolerating pokes and prods. In the NICU, stimulation includes touching from visitors, moving and blood draws by nurses, alarms from equipment (his and other babies’), other noises, and light. Everytime Nolan is moved or has something done to him, you expect his oxygen saturation to drop for a short while. Oxygen saturation is measured by a little sensor on Nolan’s foot and is displayed on the monitoring screen in real time. It’s important for the “usual” value to be above 90, or Nolan’s not really getting enough oxygen distributed through his body.

Nolan has been having a fairly steady saturation in the low 90’s (percent — 100% would be the best), and when he’s disturbed, it might drop into the high 80’s or even high 70’s for a minute or so before climbing back up. On Sunday, he was apparently overstimulated by the oscillating ventilator and became much more sensitive to all the stimuli. For instance, normally you can’t see much of a change in his saturation when alarms go off, but on Sunday night his saturation was dropping in response to every alarm and even loud voices (and the alarms go off all the time — for example, everytime one of the babies drops below her acceptable threshold of saturation because she got moved, so you can see how it could be a bit of a spiralling problem). It wasn’t coming back up as quickly, either. In trying to address the problem, they put little adhesive earmuffs on Nolan, stopped touching except when absolutely necessary, put blankets up around his bed to muffle noise, and put up a sign asking people to enter the pod from the other side. He was still very overstimulated.

When oxygen saturation drops for an extended period of time, you have to increase the incoming oxygen from the ventilator to compensate. Pretty quickly, you get up to 100% oxygen (which is not the direction you want to be going), and then there’s nothing more you can do to address the situation by adjusting the ventilator. In Nolan’s case, they had to give him sedatives to reduce his response to stimulus and eventually paralytics in order to keep him from stimulating himself with movement.

It was extremely frustrating for Kara and Ronan to watch because some of the stimuli feel controllable (like alarms and loud voices), so of course they wanted to control them. You can imagine the feeling of watching the monitor for hours, hearing alarms go off and knowing that a few seconds later Nolan would respond negatively. It was also very scary because it wasn’t clear if he would just continue to be overloaded and they would run out of options. There is an isolation room which would be much quieter, but it’s primarily intended for isolation of infectious patients, so if a sick baby came in, Nolan would have to get moved again in short order. And it wasn’t clear that the larger ventilator would fit in the room easily.

Nolan made it through the night and the next afternoon without completely overloading on stimulation, and on Monday afternoon they took him off the oscillating ventilator and put him back on the regular ventilator. They stressed that this was normal, and they might have to move him back and forth between ventilators several times to keep getting the benefits of each. Though he didn’t stay on the oscillating ventilator very long, they did feel it was good that they had been able to bring his carbon dioxide levels down for a while. At this point, they are simply trying to buy time to allow his lungs to grow.

Steroids remain an option down the road, but the doctors want to avoid using them if possible. Yesterday, Nolan was doing okay on the conventional ventilator, and I’m pretty sure they had the incoming oxygen down to 60% or so when I left. He was much less responsive to stimuli, so hopefully Kara and Ronan will be able to touch him again now.

The good news for yesterday was that the second head ultrasound showed no change from the first, which showed a Grade IV bleed on the right side only. The ultrasound was done on Monday afternoon, after Nolan had been on the oscillating ventilator for over 24 hours, so I take that to be a good sign that the vibrations might not be harming Nolan’s brain.

That’s about all the news I can remember right now. I’ll add anything else I remember into the next post.

-Maria

wee bit of an update

To balance out my long post earlier in the day, I have a very brief update.  I didn’t make it to the hospital to see Nolan today, but I understand he’s doing reasonably well.  They did decide to begin a course of steroids today.  I believe that he has begun to respond to it and they have been able to lower the oxygen level to a place they’re more comfortable with.  I don’t have much more detail than that, unfortunately.

The way the steroids work is they start with a large dose for a couple of days and then taper off over the course of a week.  So, of course we want Nolan to respond to the steroids in the first place, but we also want to see him maintain as they are tapered off.  That will be something we’ll be watching for as the course progresses.
-Maria

Wednesday, September 27, 2006

as the steroids kick in…

Nolan is holding his own today with the help of the steroids.  They’ve got his oxygen down to about 50% and he is breathing over the ventilator by about 10 breaths a minute.  They were able to reduce his tidal volume on the vent some, but decided to increase it back as his carbon dioxide numbers started going up past the nurses’ comfort level.  His blood pressure remains low to normal, I think (as I understand it, typically steroids would cause concerns about high blood pressure, but Nolan’s has been unusually low so that would actually be a beneficial side effect to a point).

They expect that the steroids may have more impact as we reach the 24 hour mark from when he got his first dose (that was Tuesday in the late afternoon).  I think they hope they’ll be able to lower his tidal volume again at that point.

Thursday, September 28, 2006

two weeks!

Tonight, Nolan turns two weeks old.  Happy birthday, Nolan!  As a birthday celebration, he busted through the 600 gram milestone and today weighs 608 grams.  That’s 18% over his birth weight.  Grow, Nolan, grow!

Earlier today, Nolan was not doing as well as we had hoped.  He wasn’t doing any worse, he just hadn’t improved over the previous 24 hours as expected.  This afternoon/early evening, his condition did improve somewhat.  Tonight, they have his oxygen down to 40% for the time being, and his saturation has held at 95% or so, even through blood draws, diaper changes, and other unpleasant experiences.  He appears a bit agitated, but maybe that’s because….  drumroll please….  he opened an eye!

Yes, he’s a bit of a little pirate right now, with only one eye open.  We know he can’t really see us, but it’s sure tempting to think he can.  The lights are very low in the NICU so it was hard to get a good picture, but I tried.  I will post the result tomorrow if I can get my computer working again.

Tomorrow at 3pm Nolan will get his first reduced dose of steroids.  We hope he’ll continue to improve even as the dose is reduced.  Keep those prayers and love coming!

-Maria

Friday, September 29, 2006

Footprints

Nolan is stable after a rocky night of fits of agitation and desaturating on his oxygen, even while sedated he managed to be upset.  This morning and early afternoon he has been exceptionally chill and has slowly been weaned down to 42% added oxygen, his weight is up to 608 grams and his CO2 this morning was in the 60s, which are very good numbers considering.  He is still tolerating Kara’s milk and he also had a remarkable elimination yesterday according to one of his primary nurses Trish. Today his footprints were taken for his official birth record and a take home record and his bedside stats and on a piece of paper from dad’s journal.  We figured while he was inked up we should get as many prints as we could. His steroid dosage is going to be cut back a little bit today, so sometime tomorrow we should see how he responds to that.  Kara and I feel a little joy in his current and fleeting stability, but we also know that he will probably have a bad time soon.  Relish this moment like a shining facet on a many sided stone.  More news as news unfolds. 

Sunday, October 1, 2006

Plateau

Nolan had a rough night last night, lots of oxygen desaturation and fits of agitation, but this morning afternoon he has chilled out some and remains stable while on some sedative. The docs think he may have picked up an infection that is causing the desats and for the x-ray of his lungs to look not so good, so they have administered antibiotics just in case. At the moment, like so many moments, we are waiting to see what happens. Tomorrow is a big day because we will all be able to see if the steroids gained Nolan any ground in the lungs department. He is now being slowly tapered off the steroids with his final dose tomorrow afternoon. He is tolerating Karas milk and his helping has been doubled and will go up soon if he continues to digest and use her liquid gold. One doctor says we are on a plateau now with his lung disease, and we have to wait to see what happens next. Wait and be patient. Nolan is peeking out of his other eye now, ever so often. Take a deep breath and invision healthy lungs and quiet rest for baby Nolan.

Monday, October 2, 2006

riding the rollercoaster

Well, the “relaxing” part of the ride ended with a bang and we’re back into rapid ups and downs.  Last night, Nolan had a very difficult night.  He was stable when Kara and Ronan left for the night, but sometime in the middle of the night, his oxygen saturation dropped and they were unable to control it.  By the morning, when Kara and Ronan got a phone update from the nurses, they had turned his oxygen up to 100% incoming, and even at that level he was only able to maintain 80% saturation.  Kara and Ronan went to the hospital, and phone calls went out and a number of family members rushed to the hospital as well to wait for news.  By the time people started arriving, Nolan was back down to 40% oxygen and holding.

Apparently, this rapid improvement came about partly because they sedated Nolan pretty heavily.  He was very agitated last night during the crisis time.

This sort of crash is “normal” and they expect it will happen again.  They don’t know why it happens, though the consensus seems to be that it’s probably not an infection (they won’t know for sure until tomorrow).  His lung x-rays continue to show very unhappy lungs, but there may have been a slight improvement in today’s x-ray image.

Nolan has continued to stay stable for the last 4 hours or so, so we hope that this will hold for a while.  They were able to turn his oxygen all the way down to 35% at one point, but then they had to do a heel prick to get blood for blood gas tests, which caused him to desaturate enough that they had to turn the oxygen back up.  I think it has stayed in the 40s since then.

They have given Nolan his last dose of steroids now, so we are at the stage where we pray that he doesn’t backslide.  While he’s had a lot of ups and downs on the steroids, they have been able to keep his oxygen lower since he started the steroid course.  Keep your thoughts focused on helping him maintain those improvements.

I will give another update later today, even if it is just to say that all remains the same.  Thanks for all of your attention and love and caring.  I know it means so much to Kara, Ronan, and Nolan.  It certainly helps the rest of the family to know that so many of you are out there thinking of our little bug all the time, checking for news regularly (I wish there were more to offer!).  Over 100 different friends have now left messages on this website, and we know that so many more are quietly holding Nolan in their thoughts.  Thank you so much.

-Maria

Tuesday, October 3, 2006

as promised,

I’m here to report that I don’t have any new news.  Which I think is good.  Last I heard, Nolan was still stable with oxygen at a reasonable level.  Sleep well, Nolan.  We love you.

on the nod

Nolan is resting very soundly right now, with Kara soaking up his peaceful presence.  The majority of his repose comes from heavy sedation, fetenyl and verset every 2 hours and as needed if he gets upset.  The current plan is to keep him resting, not fighting the ventilator, so that his oxygen saturation is good and after his last dose of the initial course of steroids tomorrow, he can start growing, despite his sedation, and hopefully his lungs will grow with him.  So, no real ups or downs at the moment, just blissed out narcotic sleep, so continue to think healthy lungs, and grow grow grow.  Let us all be peacefully in repose, Sammy Davis Jr Jr.

Wednesday, October 4, 2006

papa power

A little bird told me that Ronan was going to get to hold Nolan tonight.  I hope Ronan will fill us all in on whether that very exciting event actually transpired.

Nolan was holding steady when I saw him mid-afternoon.  Holding steady means he hadn’t had a “desaturation fit” in almost 24 hours.  His oxygen was fairly low (40-60%) and they were not having to give him extra sedation, though I think he’s still on baseline sedation.   They did turn his oxygen up while I was there because they decided to resuction and reposition him, but they were moving it back down when I left and I think he held stable after that.  Not very definitive news, but it’s the best I’ve got to offer…

Friday, October 6, 2006

the rumors are true

i did indeed get to hold my little baby boy a couple of late nights ago and just finished another session of father/son snuggling a few minutes ago.  Nolan has been stable, still, and sedated these past few days, with increased feeds fortified with extra calories in hopes of increased girth and growth this weekend.  we had a family meeting with the doctors and nurses yesterday, and the word right now is growth.  Growth in length, growth in weight, and hopefully eventually outgrowing whatever plagues his little lungs.  There are still woods to get out of, put more straightforwardly, survival and health are still not guaranteed options for our little butterbean.  But the last few days continue to feed our hope and really how many days of survival and health are any of us promised?  While holding him the past few times, Kara and I have noticed a little wheezing chirping noise which the nurse assured us is a good sign that air can get around the tubing in Nolan’s throat which means his trachea is not swollen.  Little nuggets to hold onto.   

Monday, October 9, 2006

thought we’d disappeared?

We’re back.

Nolan is stable, hurray! This evening, his oxygen level had been turned up a bit but it may already be back down again — they were headed that way. He has been holding in the 40s and 50s lately, I think. His lungs are stiffer now that he is off the steroids, so they have had to increase the pressure on the ventilator and overall the numbers aren’t quite as good as they were last week, but that’s to be expected and it is not the post-steroids crash we are (still) hoping to avoid. We are basically in the same holding pattern as we have been, which is really a good thing, because right now a dramatic change would likely be for the worse. It’s the nature of this kind of chronic lung disease that it won’t get better suddenly.

This morning they were concerned that Nolan’s head was swelling, which could be a sign of hydrocephalus or more bleeding (neither one is good). They did another ultrasound and it showed neither of those so we had a happy jig after we let our breath out again. There’s still some chance that either hydrocephalus or a spread in the bleeding is occurring, but I don’t think they’re particularly worried about it now. More likely that it is a more general post-steroids fluid gain. Anyhow, it is always nice to have a test come back with fairly unequivocally good news. [The bleed which showed on the first ultrasound is still there, but hasn’t spread. I don’t know when it will go away, but not for a while, so it has become part of our baseline.]

Kara was admitted to the hospital today for a blood clot in her leg. She’s doing fine, especially now that she knows that they don’t have any problem with her being up and about and visiting Nolan while she’s admitted. She’ll probably only be there overnight, so by the time you read this, she may be out already. She may be on medication for a while, but she won’t need to have surgery or anything invasive as far as we know. The doctors expect the meds won’t be a problem for Nolan via Kara’s milk, so he will continue to get his magic elixir which is of course a great thing.

Ronan is super-husband-dad and that’s the whole story.

Love, prayers, and lotsa super-stress-reduction vibes for the beautiful family, please! Thanks for keeping up the comments despite our posting hiatus. You busted through the 200-comment mark over the weekend and we love you for it. Your support holds us up. Thank you.

Tuesday, October 10, 2006

circle the wagons

Nolan is in the midst of a crisis at the moment.  They believe he has a systemic infection, which is impacting him in a number of ways.  They have started him on “big gun” antibiotics (vancomycin) and we hope he will begin to respond by Wednesday morning, though that’s a vague guideline.

He has been having trouble with oxygenation and ventilation all day.  They have had to increase the pressure on the ventilator to a very high level, and there is some danger that it will burst a hole in his lungs, so we hope they will be able to turn that down soon.  His oxygen level is up to about 80% right now, and he’s saturating well at that level.

He is also having gastrointestinal problems.  He is not “processing” the milk they are giving him — it just stays in his stomach.  They did an x-ray and were able to determine that it isn’t caused by a worst case problem (sorry, I don’t know what that is), so is probably another symptom of the systemic infection.  That’s good, because at least we’re dealing with one source problem.

Blood pressure and heart rate have also been problems today.  His blood pressure was extremely low for a while, though they have gotten that back to a level they’re more comfortable with.  His heart rate is high now.  Again, these problems are due to the infection.

Kara is still in the hospital tonight but she has been up and around and spent most of the day with Nolan in the NICU.  As far as we know, she will be discharged on Wednesday.

Hold tight to the good news and lift Nolan up with your love to help him get past the bad news.  Visualize antibiotics circling the wagons to defend Nolan and quickly vanquish non-resistant bad bacteria.  Sweet dreams to Nolan on his many undoubtedly loopy medications, and sweet dreams to all of you out there who are loving Nolan.

Wednesday, October 11, 2006

quick note

Just wanted to give you all a very quick update.  We heard some better news this morning.  I got a phone update from the hospital and Nolan appears to be responding to the antiboitics. He’s still in a very fragile, precarious place, but the course of care the doctors and nurses put together are helping him through this valley.  He is by no means out of danger in this particular crisis, but we are always pleased when things look a little brighter, and I wanted to share that bit of joy with all of you.

Thursday, October 12, 2006

surgery

I just got word that Nolan is going into surgery.  They are concerned that he may have a necrotic area in his gut, as an ultrasound today showed a large bruised area.  If there is a necrotic area, they may be able to remove it now but if they waited, they would not be able to.  Or at least that’s what I understand.

I gather that Nolan is more stable today, despite this news.  They think he is stable enough to undergo surgery, which seems like a good thing to me.

-Maria

SuperNolan!

Before the chatty stuff, the quick news is that the surgery was successful and Nolan came through it great. Hooray!

Today was Nolan’s four week birthday — happy birthday, Nolan! One of his main squeeze nurses, Trish, brought in birthday cupcakes for the trooper. Okay, not actually for him to have — I think it’s against NICU policy to blend up cupcakes and mix them with the breast milk at feeding time. Something about too much sugar?… The cupcakes were superman cupcakes, because Nolan is such a tough little superhero in battling all these problems. How sweet is that?

The superman emblem is actually a ring on top of the cupcake. While we were waiting for news from the surgery, we had pizza and cupcakes in the NICU waiting room and thought superpower birthday thoughts for Nolan. We put on the superman rings and actually laughed a bit and had some fun mixed in with the anxiety of waiting. Apparently it worked, because soon after, Nolan’s surgeon appeared with good news. Nolan was out of surgery already, and they had indeed found a necrotic area in his intestines.Now, we’d rather he didn’t have a necrotic area at all, but given that he had an infection, it was good that they were able to find a clear problem and deal with it. They don’t know if the necrotic tissue is the chicken or the egg with the infection, but removing it should help him get over the infection at this point. If it had not been removed, he would have died, so I guess it’s an understatement to say it will help him. The surgeon removed about 8cm of small intestine and 2cm of large intestine, which Dad pointed out means Nolan will never get appendicitis. So, hey, he’s ahead of the other kids in that department… The surgeon also said that the other parts of his gastrointestinal system that he saw looked great, and that there was very healthy intestine on either side of the clearly dead intestine, which is not always the case. It means it’s quite likely that they got everything they needed to get and no more, and they shouldn’t have to repeat surgery as they might if it was less clear which tissue needed to go and which didn’t.

We were warned that the next three days or so will be very rough on Nolan. He will take on a lot of fluid (he already had, but it won’t get better right away) and that will impact his lung function. So, though he’s out of surgery with no immediate complications, we expect a fair amount of nail biting over the weekend, and there’s the possibility that it will just be too much for his lungs. They hope that Nolan will begin improving lung function on Sunday (back towards the pre-infection baseline, which wasn’t great but was a lot better than the recent crises).

With all that dire stuff said, I’m pleased to report that his stats when we saw him just after surgery were great. He was saturating at 97% on just 40% oxygen, and he was steady as could be in all the things they monitor on those screens. On the monitor, he looked like a different baby to me. I’m glad to be forewarned that things will likely go downhill for a few days, because it would be easy to think he was out of the woods with this one. Of course, it is wonderful to see him so stable, even if it is short-lived.

Kara and Ronan are spending the night at the hospital in a “parent sleep room” that the NICU has for this sort of time, when parents want to stay close to their baby but also need to sleep. Imagine that.

I’m including a picture of Nolan from tonight. As you can see, he’s very swollen with fluid, but that’s just his four-week-old phase and with luck, he’ll be out of that phase soon.

Sweet dreams to all.

Love,

Maria

Friday, October 13, 2006

Nolan the contrarian learns to say “no”

Nolan is feeling contrary today and decided that he wasn’t ready to do as the doctor said. He’s continuing to do very well despite the expectation that he would be struggling now. He stayed about the same all through the night and has been stable today, so we are counting our blessings and hoping that this trend continues. I know we have all learned that good times are always followed by down times, in that “three steps forward, two steps back” manner (though sometimes it feels like we’re walking in circles even with the forward movement), so we are trying not to lose sight of that inevitability… but WOW, our spirits are sure lifted for the moment. We’ve been in the low point for so long that it just feels great to get some good news and to know that Nolan is getting a break from the hard hard struggles of the last week.

Kara and Ronan are a bit better than the rest of us at keeping it all in perspective, but still I know that they are happy to have this time right now. One of Nolan’s nurses who is very careful not to raise hopes too high (her own or ours, so as not to make the inevitable fall so hard) said she was surprised and very pleased with Nolan’s condition. Hooray!

I’m slowly getting some older pictures uploaded into the photo album. This is a picture from Ronan’s first kangaroo with Nolan last week.

Oh, and I wanted to correct my earlier statement about the bruise and the ultrasound. Turns out the bruise was on his skin and he had external swelling there, which is not a usual presentation of anything (one veteran nurse said she had never seen that in 20 years), and that is why they decided to do the ultrasound. The ultrasound showed an area of concern, but they weren’t sure whether it was necrotic tissue or not, leading to the question of whether to put him through surgery or not. Or course, Kara and Ronan and the doctors made an excellent decision there.

Thanks for all the love and support and shared joy!

smooth ride

It sounds to me like Nolan has had an entire 24 hours of smooth stability since his surgery. At any rate, the phone update I got a couple of hours ago was that he was about the same. I’m just inferring about the time in between updates being smooth. Today, no news is good news.

Sunday, October 15, 2006

New Tube for Superbean

So, Nolan got a new ET tube put in today, apparently the old tube was blocked by a pretty big goober (NP’s words) which was causing little bean to desat on his oxygen which caused pretty big drops in his heart rate.  Before the new tube an x-ray was done, which showed that Nolan’s right lung has pretty much fully collapsed so he’s back on high pressure to try and reinflate his lung and on high added oxygen to keep his o2 saturation up.  The np thinks it will take some hours to get the lung reinflated which is more reassuring than some days.  one added concern is that Nolan’s body seems to be eating up platelets at a high rate.  He’s received quite a few platelet transfusions over the past 24 hours which could mean a few different things:  persistent infection somewhere or a continuing necrotizing of his intestines.  at this point its a wait and see strategy from the docs, surgeons, and nps.  some positive info, his blood pressure has remained good, he has opened his eyes wide and long to look into karas waiting gaze and he seems to respond to a singsong from his parents that goes a little something like this:

“No-lan La-Rue,

Heal-thy cells through-out your body,

No-lan La-Rue,

Healing lungs for you,

and Good Growth too.

(alternate with)

and a healthy gut too.

      or

We love you.”

Feel free to hum it all day long.  Kara and I wake up singing it.  Peace and light.

Tuesday, October 17, 2006

more of the same

There is not a whole lot to report. Nolan continues to be stable and is sticking with his trooper routine. He has continued to gain weight (fluid), so he’s still quite the ripe bean. Actually, I think he kind of looks like a linebacker now — the fluid is making him more wide and less round, it seems. They are trying to figure out why the fluid isn’t draining by now. They’ll have a look at his heart (echocardiogram?) tomorrow to see if anything there is contributing to the problem; if so, he would probably have surgery on Friday.

He’s also still losing platelets, but at a slower rate than before, so we hope that is on the way to resolving itself. Another piece of the puzzle…

-Maria

Thursday, October 19, 2006

no surgery this week

The doctors decided that Nolan wouldn’t need surgery this week for his heart, but he may need it as soon as next week.  He has patent ductus arteriosus.  The ductus arteriosus is a normal fetal blood vessel that shunts blood away from the pulmonary artery in the womb, where the baby doesn’t use his lungs because he gets oxygenated blood from the placenta.  Once the baby is born, the change in oxygen levels causes the ductus arteriosus to close naturally within the first day.  In many premature babies, this doesn’t happen.  It’s called patent (pronounced pay-tent) ductus arteriosus, or PDA.

As you can imagine, having a blood vessel that is designed to shunt blood away from your lungs because you don’t need your lungs, isn’t that helpful when you actually do need your lungs.

PDA could still resolve on its own for many babies, but in Nolan’s case, they believe it is a significant enough part of his persistent lung problems to warrant surgery as soon as they feel he’s ready for it.  It’s a pretty hard surgery (Kara says they have to move his lungs out of the way), so there’s a fine balance between waiting until he’s strong enough to handle it well, and knowing when the waiting won’t help much more because he can’t get stronger lungs without it.

We’re glad he doesn’t need surgery right away, but we hope that when he does have it, it will help his little lungs clear up and not have to struggle so hard.

Otherwise, things remain much the same.  Thanks for staying tuned in as the news slows down a bit.

Friday, October 20, 2006

just a tiny bit of news

Nolan has started to lose some fluid, slowly. He got rid of about 10% over the last couple of days (he had almost doubled his weight with fluid). You can see the difference if you had seen him before, but he’s still a swollen little bean and has a ways to go.

They weigh every diaper to check urine output… so for now, you get to focus your thoughts on producing more heavy diapers. Pee, Nolan, pee!

And, oh, gosh, we passed by the 5 week milestone without comment. Happy birthday, Nolan! Thursdays will never be the same now that we get to celebrate your birthday every week.

Saturday, October 21, 2006

status quo

Nolan has had a few days of quiet stability, with a few desats here and there for excitements sake.  He continues to improve in many ways, huge pees, levelling out of his white blood count, weaning of hydrocortizone, etc.  He still needs surgery for his PDA but the powers that be are trying to push the surgery further back to give him continued recovery time from his NEC surgery which happened a little over a week ago.  He’s recieving big love from Utah and Alabama, his uncle Shannon is visiting for the weekend from SLC and his aunts Margaret and Noni are up from Alabama.  The little butterbean has transformed from a love generator into a love magnet.  Keep us in your daily thoughts and keeping flinging that metallic love our way.  Peace to everyone.

Tuesday, October 24, 2006

New Tube Two

Nolan received a new, shiny bigger ventilation tube today, he is up to a number 3.  this new bigger tube seems to have solved his oxygen leak problem, which will hopefully make oxygenation a little more effective.  he also underwent a contrast study on his intestines this morning which involved shooting dye through his intestines and an xray to see if any strictures (narrowings) or blockages were present.  after a worried night and morning, kara and i are pleased to learn that no strictures were present on the preliminary reading.  and tonight, nolans colostomy had a little bit of oozing green mucous, which is good on the no blockage front.  the oozing more than likely was the barium from the contrast study, and for you potters out there this barium oozing is a good thing.  so, his pda surgery may be moved a little into the future depending on how he fairs (fares?) on the new ventilator settings and larger tube.  Kara spotted quiet a few smiles on Nolans face today, which hopefully attests to his comfort and well being and not to this little beans taste for sweet fentenyl.  So, sweet dreams to yall and breathe deep, breathe easy and keep nolan in mind. peace.

Wednesday, October 25, 2006

pda surgery is on

We got a phone call this morning from dad/Lynn letting us know that they have decided to go ahead and do the PDA surgery today, probably this afternoon. It will be scheduled when they have an opening. I’m not sure what brought on the change of plan from “push it back” to “go forward now,” but I did not get the idea that it was a crisis that caused the change of plan. I think he’s in pretty good shape for the surgery at this point.

So, this afternoon be thinking of strong heart and lungs, a very sterile surgical field, attentive surgeons, and a baby who is just itching to grow some more once this pesky surgery is out of the way.

happy images to hold in your head

Since it’s a big surgery day, I thought I would post a couple more pictures to help you all visualize our little bean growing just like Jack’s beanstalk.

These are older pictures, from when Nolan only had one eye open.  It’s hard to get pictures with a point-and-shoot camera because it’s so dim in there, so I’ve never gotten any with both of his eyes open (if anyone local has a digital SLR I could borrow, I might be able to get better pictures).  The toes…  well, they’re just cute.  His heel is bandaged because they have to stick his heel to do all those blood gas checks (which they are having to do fewer of these days, by the way).

We’ll let you know when there’s news about the surgery.

check that one off the list

PDA surgery successfully completed!  Now it is on to recovery, which will probably be difficult but we hope will be breezy.  The surgeon did note that Nolan’s blood pressure went up right after the surgery (they’ve been concerned that it has been persistently low), so it looks like that should be one benefit of the surgery.

They’re working on stabilizing Nolan now.  We’ll try to update again once we get more news, though sometimes the news is a long time in coming.

Thanks for keeping watch over the butterbean.

Saturday, October 28, 2006

BM!

The excellent news of late is that Nolan has had a bowel movement (actually, more than one).    I believe that when they did the heart surgery, they also dilated some narrowed passage a bit, which seems to have cleared the way for waste to exit the body.  This is a Very Good Thing, as it means there is not a blockage that would cause them to have to do another surgery.

Otherwise, Nolan is doing well post-surgery.  Yesterday, Kara reports that he was very agitated in the morning but they managed to get him calmed down by the middle of the day.  It’s a balancing act with the oygen level, pressure, and drugs, but none of those are at notably high levels at the moment.  Clear skies, only very mild turbulence at the moment.

Monday, October 30, 2006

ahem

It’s really going to blow Nolan’s rep when he’s 15 and being cool in front of his sweetie and his parents tell the story about when he was a baby and there was an entire website where people checked in on and commented about his bowel movements. And since Aunt Maria will be the one who gets the blame for starting that little thread, I feel the need to offer up another topic for comment to distract everyone.

I don’t have much in the way of real news to report, but I do have a fuzzy picture to share. Last night when I visited, Nolan was awake and doing his best to look around. I tried to take a video but it was far too dark. I wish I could have shared with all of you. He doesn’t move his head much but he manages to move his face a lot. I know that doesn’t make much sense, but there’s a lot of scrunching of the forehead and the rest of his face, and it feels like he’s moving his head around. He was also moving his hands a fair amount and yawning, which is very cute despite the vent tube in the way. (However, in the freeze frame of pictures it not only looks very blurry, it also looks like he’s trying to scream, which is more horrifying than cute.  So I won’t be uploading yawn pictures just now.)

Last night I was also aware that he actually had hair on his head. It’s not a lot by baby standards, but it was the first time I’d really noticed it. It’s very light and fine and surprisingly long. And I would have stroked it if it weren’t for that dang fear of causing him to desat suddenly…

He’s holding reasonably steady on the oxygen overall, though. Not so many random desat fits, which is great.

Goodnight, and thanks for checking in!

p.s. For those who haven’t figured it out: if you click on the pictures in these posts, it will take you to the photo gallery and a bigger picture.

Tuesday, October 31, 2006

stats update

It’s true, it has been a while since I’ve done a stats update. Part of that is because when Nolan got fluid-logged after the abdominal surgery, his weight shot up to over 1000 grams and then as he slowly lost it, no one really knew how much of his weight was “him” and how much was excess fluid. Now, however, just in time to answer Peter’s question, they do think he has lost all the excess fluid.

On this, Nolan’s first Halloween, Nolan weighs 888 grams and is 32 cm long. For the metrically-challenged, that’s 1 lb, 15+ oz — tantalizingly close to 2 pounds — and just over 12.5 inches. For the statistically-challenged, that’s a 72% gain over his birth weight and a 14% gain over his birth length. Pretty impressive, but then we know that Nolan has much more to show us under the heading of “impressive.”

Also after the abdominal surgery, they stopped feeding him breast milk for a bit (dang that surgery, it just got in the way of all kinds of stuff). They restarted some time ago but had to increment from almost nothing again so it has been slow going. He’s now at 4cc of liquid gold (a bit less than a teaspoon) every 3 hours. He gets fed through a very thin tube that is attached to a syringe of milk that is in a machine which veerrryy slowly squeezes the syringe at a very precise programmed rate. Who ever knew breast milk could be fed in such a scientific manner?

The liquid gold manufacturer is, not surprisingly, supplying at a rate greater than 8 teaspoons a day. Because everything is measured and scientific in the NICU, excess LG is stored in plastic tubes that must be labelled separately for each session. This leads to a large quantity of partially filled containers that must be frozen, which leads to Kara and Ronan’s freezer looking like a science experiment waiting to happen. Nothing but LG containers. No room for ice cream.

Going back to the picture and the question “what’s on his head?”… That’s an IV needle taped to his forehead. Ouch. Preemies, being tiny all over, have tiny veins that are hard to get into and hard to keep open (just one reason why NICU nurses are Amazing). The head happens to have some good veins on it, so Nolan gets to wear a needle on his forehead for now (it moves to a new location periodically). Perversely enough, having the IV needle on his head may well be more comfortable, since it doesn’t get stuck in a joint where it has to be protected and the line is out of the way. Nolan can move his arms all he wants right now.

The thin red line coming in from the top right of the picture is his feeding tube. The vent tube is the larger clear one going off to the bottom left. He’s got various sensors taped to him, and that’s a bandage covering his surgical site. His colostomy bag is tucked into his diaper.

Last set of numbers for the day: Nolan’s platelet count has suddenly skyrocketed again (a good thing). His platelet count is over 200,000 today. No clear reason for the sudden upswing, but as the doc said, “we’ll take that.”

Wednesday, November 1, 2006

and…

…and on his first halloween ever, nolan received a halloween quilt and pumpkin took (boggan for the mountain folk) from the nicu nurses and volunteer quilters, and most importantly of all, kara and nolan did kangaroo care for the first time in ages.  we were all very happy and content and felt just like marsupials in wait of the great pumpkin.  happy all saints day everyone. 

Saturday, November 4, 2006

pictures on the way

Nolan has been very stable over the last few days. Kara or Ronan has gotten to kangaroo every night for the last four days, and it looks like the trend will continue! Nolan’s platelet count is at a whopping 329,000 and waste output continues to be excellent so they are increasing his milk intake a bit faster now. In fact, the other day, he had a diaper with 75cc of urine in it… If I’ve done my conversions correctly, that’s about 8% of his body weight! Needless to say, he lost a bit of weight with that one, but now they really think he’s lost all the excess fluid. Really.

Here’s a picture of Kara and Ronan and Nolan from Wednesday. A rare kind of picture, since it not only requires one of them to be kangarooing, but it also requires three people to be at Nolan’s bed, and that is Not Allowed though we obviously try to bend the rules sometimes. Treasure this particular picture. Exciting news on the picture front, though: my friend Satsuki has kindly lent me her camera for a few days, so I will be able to get some better pictures of Nolan, and hopefully even a passable video. In fact, I got some great pictures last night but haven’t had a chance to upload them yet. Keep an eye on the photo albums. There are already a few new pics from Wednesday of Ronan kangarooing.

Thursday, November 9, 2006

a bean odyssey

duuuh-duuuh-duuuh

da-duuuh

bom-bom-bom-bom

…and so on Nolan’s 2 month birthday he weighs in at 1001 grams, thats 2# 3 oz!, almost double his birth weight and hopefully well on his way to pounds and wonderful pounds of fat and muscle.  he has a new friend, his zakee, a big microfill fleece hand that snuggles around him (pix on the way) and he, nolan, is almost a clean straight bean with only 1 mic/kilo/hour of fetenyl (sedative) on his drip as opposed to the 7 mic/kilo/hour after his pda surgery.  he is back on full fortified feeds of karas mothers milk and is on low oxygen requirements from the drager ventilator.  kara and i are feeling good and nolan seems to be feeling the same because he smiles alot, or it just could be gas. 

he still has a million miles of hurdles:  the docs have tried ventilator changes in attempts to ween him, but basically he’s back to the same settings he’s been on for a while; he is on continuous feeds to help nutrient absorption because his ostomy output (#2, poopy) increased slightly which could result from the increased calorie fortification of kara’s milk or poor absorption from his healing bowels; he is receiving sodium and potassium supplements because his electrolytes have been lower possibly because of the increased ostomy output and lasics (diaretics).

all in all, nolan continues to slowly gain ground in this world, and we will take and cherish every inch he procures for himself and his tiny fist shaking in the air.  thanks to everyone for keeping up and keep sending growing thoughts nolan’s way.  pray that he grows like a little butterbean stalk which seems to be the path to Nolan’s joining his family at home on windsor circle.

Friday, November 10, 2006

a picture a day

It has been slow going getting more pictures uploaded but I will try to get one or two up every day since we’re in a slow news period. Here are some pictures from last Friday of Ronan and Nolan kangarooing.

Pretty sweet, huh?

I love Nolan’s tiny little hands.

Stay tuned for more of the same… one of them is kangarooing every day now! I do have a few slightly different pictures up my sleeve, though…

-Maria

——-

Saturday, November 11, 2006

keeping everyone on their toes

so, after a relatively long while of stability and relative calmness, Nolan managed to extubate himself this morning.  This was at the beginning of a morning kangaroo session with kara which ended up scaring his parents half to death and initiating a “code” response from about 15 hospital staff.  i repeat, scaring us three-quarters to death.  fortunately, due to such a rapid response and epinephrine, nolan is again wide-eyed and squirmy with energy and life to go around.  he’ll be off feeds for a couple of hours, but all in all everything should be back to about the same in a few hours.  he’s got a total of two extubations under his elastic diaper straps now.  whew, again i say whew. we figure nolan is not letting us take one iota of his being for granted and we’re trying not to slack off into too comfortable a lull if we can help it. 

Thursday night kangaroo session

pictures from Nov 9th…

when he was busy celebrating eight weeks out of the womb by snuggling with his mama.

————–

Monday, November 13, 2006

hands all around

The theme of tonight’s picture posting is hands. Lots of hands. These pictures are from Sunday, 11/12.

The one hand you might not notice is the Zaky behind Nolan in the first picture. It’s the brown fleecy thing, designed to be like a parent’s hand, a bit like a body pillow for little babies. The UNC NICU is trying them out.

Nolan was nearing time for another Fentanyl dose, as you can see in the second picture. Check out those white fingertips! He’s got quite a grip when he’s angry, and if you don’t give him anything else to grab, he’ll grab his vent tube with that grip. We don’t like that so much, so we try to give him a finger to take his frustration out on. When he’s upset like this, he screws up his face and looks for all the world like he’s gonna bust your eardrums… but there’s no sound. His weak little lungs can’t overcome the vent tube to make sounds. One thing about the NICU is that there are lots of alarms, but you don’t hear babies crying as much as you’d expect.

Nolan goes from sleeping (or looking like it) to angry writhing to sleeping again in a remarkably short period of time. Unfortunately, with the Fent wearing off, he gets back to upset again in short order.

Tuesday is a big birthday day, so sing a song for mom and son… Kara has a real birthday, and Nolan has one of those not-quite-as-usual birthdays we like to celebrate: two whole calendar months since he was born on September 14th!  We have so much to be grateful for.

Tuesday, November 14, 2006

birthday goals

I must be superstitious, or at least like things to coincide in certain ways which seem auspicious to me. At any rate, I have been hoping that Nolan would manage to double his birth weight for his 2 month birthday, and Nolan was very cooperative. Today, he weighed in at 1040 grams, just 10 grams over the goal!

For Nolan’s birthday, his nurse Trish made super-rich brownies to share. You may remember Trish for her superman cupcakes from last month’s celebration… It’s no surprise to any of you, I’m sure, but Nolan has won over the hearts of the nurses despite their obvious incentive not to get overly attached to the babies in their care.

For Kara’s birthday, I am posting some “happy mom” pictures from Sunday. There are still scary times for Kara and Ronan, including the sad loss of another baby in Nolan’s pod last night, but things have been more stable and we do get to see many more smiles from Kara and Ronan these days. It’s wonderful that kangarooing Nolan is not a rare event anymore.

My next dream: no vent and the freedom for Kara and Ronan to hold Nolan so they can see his face and kiss him while holding! Three months, here we come!

In case you need a visual to help you with that growth goal, this picture from the very first kangaroo session is just to remind you how much smaller 500 grams is than 1000 grams… Go Nolan! Go Team Nolan!

Speaking of Team Nolan and celebration, I want to take this chance to say again how very grateful we all are for the loving presence of each of you out there. You each make it seem effortless, but I know that it’s hard to give so much love, support, thought, and attention to a person you’ve never even met. Thank you for tuning in and loving Nolan and his parents so very much. You make the world go ’round.

Saturday, November 18, 2006

growth is the goal

Peter, can we take the 40 pounds in smaller increments? I don’t think it would be healthy for Nolan to suddenly increase his weight by 2000%, but we could use a pound or so pretty soon…

Nolan had a couple of scary episodes yesterday where he desaturated and had to have a bit of emergency intervention from the staff. I believe his heartrate slowed way down and he desaturated way too much and they had to bag him the first time. The second time, they changed his vent tube. We hope that fixed the problem — there was a bit of goober in his tube, so it might have been that he was stopped up, but regardless, it highlights the fact that he just isn’t going to get off the vent until he grows a good bit more, and right now, he’s not growing as fast as they would expect. He’s falling behind on the growth curve, when what he really needs to do is catch up to it.

They’ve fortified his milk with extra calories already, and have just upped the fortification, so we hope that will provide some results. They’re really not sure what the problem is, which makes it hard to fix. They’ve tested his thyroid levels, but they’ve gotten the results of that back and made no comment, so they must not think that is the problem.

On the very positive side of things, they examined Nolan’s eyes the other day, and they are developing normally. Eye problems, from minor impairment all the way to complete blindness, are a common side-effect of the high vent settings that Nolan has been on (the rich oxygen concentration causes the blood vessels to grow differently), so we are really pleased to hear that it looks like his eyesight has been spared so far! They’ll keep checking his eyes every few weeks to make sure problems aren’t developing, but things look great at this point.

Pray for Nolan to get maximum use out of his liquid gold and grow, grow, grow. Oh, and speaking of gold, the other day, I calculated that Nolan’s birthweight was worth $10,000 in gold on the open market! Priceless to us, of course.

-Maria

Sunday, November 19, 2006

more bumps in the road

So Nolan has gained a good amount of weight, clocking in at around 1200 grams, the reality of this gain is that it is mostly fluid and our little butterbean is again a little puffy from blood transfusions and added fluids.  We found out today that he has a blood infection with a positive culture for staph orias (spelling?) but the good news is that this infection is treatable with antibiotics which he was already on after his most recent extubation.  The protocol for patients with blood infections is to test for meningitis, which we should find out about tomorrow or tuesday, and also to do a culture for possible infection of the lining of the heart (i believe nurse kilb said “endocardi-” something), with the overall good news being that any of these infections are treatable with long courses of antibiotics.  Nolan was a little wiped out yesterday, and subsequently so were kara and i, but today he seems a little more active and looks like he feels a little better which could be a mark of the antibiotics doing their job.  So, as always keep us close in your thoughts, and keep on keeping on the growing mantra.  Good things to remember:  nolan is on feeds again, nolan looks better today, nolan smiles and arches his eyebrows when he hears karas voice and he remains the little love generator that he has always been.  thanks and peace.

Monday, November 20, 2006

son of “growth is the goal”

so, monday mornings can hold good news and any bit of positivity from the nicu staff is met with open arms by kara and me.  on rounds the docs said nolan looks good, he HAS gained some actual weight (he’s up to 1250 grams now), the antibiotics seem to be doing their jobs, and his wound is healing up nicely (nolan has a small sore near his ostomy which is suspected to be the point of entry for his staph infection).  his lumbar puncture (in order to test for meningitis) was unsuccessful yesterday, so given that he is looking better his repeat attempt at drawing fluid from his spine has been put off for a day or two.  the recurring theme is “growth is the goal” and the route of nolans health lies in his added grams and soon to be pounds.  thanks for sticking with us and keeping us close, and keep on keeping on.  more news later.

Thursday, November 23, 2006

happy turkey day

Nolan seems pretty stable today, his first thanksgiving and thanks to catherines reminder, his 10 week birthday!  he is weighing in at 1320 grams, taking into account that a little of that is fluid weight.  he’s been pretty active, actually pretty angry in spurts the last few days but has discovered his pacifier, his “bipi”, and loves to have it dipped in sugar water. in addition to a slightly increased dose of fetenyl, nolans bipi seems to soothe the savage little beast.   kara recognized that sweetness is probably his first taste sensation, which is only fitting considering the sweet impact the little love generator has had on so many.  have a huge helping of butterbeans this grateful for so many things thanksgiving day.

Sunday, November 26, 2006

back to the birthday

I’ve finally sorted through all the pictures I took while borrowing Satsuki’s camera, and the pics from Nolan’s 2 month birthday are in the gallery now.

I love this picture of Nolan sleeping because you can see how much chub he’s putting on. He’s got enough fat on his body now that he looks almost like any infant sleeping peacefully (with a vent tube down his throat and an iv in his hand). Fat means he’s getting enough calories that he can store some of them, which means he’s growing!

He is still a pretty wee thing, of course, as you can see from this kangaroo picture from his birthday. Just a bigger wee thing than he was a couple of months ago.

Little bean is working hard on becoming a medium bean, on his way to being a big bean…

There are more new pictures in the gallery if you just can’t get enough.   They’re in the “second month” album, at the end.

Tuesday, November 28, 2006

Nolan’s public relations agent

I thought some of you wonderful people who follow this site and don’t know Maria might enjoy some pictures of her with Nolan. If you check the second month album in the photo gallery, you will see she has been hired as Nolan’s public relations agent. Her job is complicated by NICU rules which only allow two people in at a time, one of whom has to be a parent. (There is an exception for grandparents-for which I am grateful- who do not have to be accompanied by Kara or Ronan.) So she has to coordinate her schedule with Kara and/or Ronan in order to see her client and obtain firsthand information to update Nolan’s public. Otherwise she gets it second or third hand which can compromise the accuracy of her publicity releases. Needless to say, she is not happy about this, but the NICU is unyielding so that they will not be overrun with public relations agents. Nevertheless, she has persevered and is doing a great job with some great assists from Ronan. You will note from the photo another complication. Nolan has a strong tendency to sleep through her conferences with him. Hopefully he will be more cooperative when he grows up.

Carolyn and I are most thankful for all the love and support we are receiving. Your love and support have been so important to Kara and Ronan and Nolan, and we are grateful for that.

Love to all of you from DinDin.

Thursday, November 30, 2006

11 weeks and growing

Nolan busted in at 1387 grams on his weigh in last night, that’s 3 pounds and .9 ounces on his 11 week thursday birthday!  the docs are thinking about increasing his calories to hopefully increase his growth curve and he received some lacto basilus to increase the flora in his intestines for digestions sake.  the thinking being that the antibiotics hes been on could have wiped out the good with the bad flora.  nolans ventilator needs seem to be decreasing, he is on lower volume and pressure and his fio2 (added o2) hovers around an average of 40%, which is great for the little butterbean.  and to temper this good news with a little potential worry:  nolans eye exam showed a little thickening or bunching of the blood vessels in his eye which could lead to some problems with his retina; right now their just keeping an eye (p.i.) on his eyes and moving towards laser surgery if things move in that direction.  kara and i appreciate everyone’s thoughts, prayers and support and nolan appreciates stephens good luck charm for the heels to overcome ohio state last night.  grow, grow, grow, our daily mantra. 

Saturday, December 2, 2006

day/night in an afternoon

yesterday held many surprises for the peterberrys, early talks of getting nolan off of the ventilator and onto a less damaging to the lungs cpap turned into an evening of increased ventilator support and one very upset preemie.  night and morphine offered rest and stillness for nolan and his whole episode provided a few steps back (but not too many!) in getting nolan off the vent.  today he has had stillness and agitation, but seems to be doing okay overall.  he is gaining weight, up to 1417 grams, 3#, 1.2oz and his color looks great. nervousness on our part but thankfulness too.  even conversations of getting him off the vent are encouraging.  more news later.   

Monday, December 4, 2006

shhh…

we are keeping this very hush hush, so don’t tell anyone, especially Nolan, but he is on 29% added o2, which i believe is pretty close to room air concentration, and he is up to 1443 grams (3#, 2.9 oz) and the docs are pleased with his growth and weight gain over the past few days.  talks of cpap and extubation are scheduled towards the end of the week, but all of this is a big surprise for our little butterbean so please dont let him know just quite yet.  as y’all know, he is quite the contrarian and we want all this good news to stick around for a while.  loose lips increase pips. keep this on the low down.  a whispered thanks to everyone.

p.s. everyone saw the lady heels roll over ut last night, right?!?!?  nolan already knows about this, kara and i told him in hoarse and parched voices around 11pm last night. 

Saturday, December 9, 2006

sat update

Nolan is approaching three times his birth weight of 515 grams, as of last night he weighed in at 1514 grams, he had a week of slow but steady weight gain.  The docs have decided to increase his calorie fortification to 27 cal to see if it will increase his weight gain.  He is up and down on his ventilator settings, but thankfully his o2 requirements remain lower and the pressures to keep his lungs inflated seem to be the main points of concern and fluctuation.  This weeks eye exam caused some concern, and nolan is due for a follow up on tuesday which could determine whether or not he will need laser surgery.  The attending optometrist said there were markers in place and given his age that his eye problems may resolve on their own without the need for the surgery.  Also on the menu for the coming week is another attempt at extubation and getting Nolan on the cpap to give his lungs a little rest and see if he has made any more progress in moving away from the chronic lung disease days.  And finally, straight from slc, utah, Nolan’s auntie amy is coming in late monday night for her first visit with the butterbean. he, kara, and i (as well as her puppy and kitty niece and nephews) are really excited and looking forward to her visit.  thanks to everyone and keep the growth mantra going. 

Monday, December 11, 2006

per pedro’s request

the cpap is the next step for nolan in respiratory/oxygen support.  its a mask that supplies a very high pressure of o2 which utilizes nolans nasal passages and helps
reduce the damage the ventilator, tube, and raw o2 are doing to his lungs, trachea, and vocal chords(in addition to giving him the o2 he needs to live).  the whole calorie thing i have no explanation for, i seem to understand that 27 calories fortification to karas breast milk is the limit that nolan can digest and absorb nutrients from at a rate of 9.4 cc an hour.  any more caloric fortification or volume and he tends to “dump” whatever is coming in, meaning it goes straight through him and straight out into his ostomy bag (his poop bag) and thus not be able to get the nutrition he needs to grow.  more later. namaste. 

Thursday, December 14, 2006

extubation part deux

So, today is Nolan’s 3 month birthday and he is three times his birth weight at 1536 grams, (we’re saying 3 times because he did drop down to 475 grams at one point before he started coming up!)  but the point is today is Nolan’s three month birthday and he is currently swaddled in a carolina blue dinner jacket and blankets, sleeping soundly, and quietly growing and gaining ground on his lung disease.  So much ground that the docs are attempting another planned extubation today and another try at cpap, a step forward in oxygen/respiration support for the little bean.  So more thorough update: he is on 28 calorie fortified mother’s milk, at 9.5 cc/hour, he is maintaining his own body temperature (his bed warmer has been off for a couple of days), he is off morphine with little to no indications of withdrawal, his eye situation is resolving in one eye and maintaining in the other, and his o2 needs and pressures have been very low for a few days now.  A whole lot of gifts for his first three month anniversary on this plane of existence.  thank yall so much for your support and think of us as auntie amy and papaw and mamaw peterson visit the butterbean and his hopeful parents.   

extubation part deux, update

The planned extubation was successfully accomplished, and as of this writing, Nolan has been off the vent and on CPAP for about seven hours now. Happy birthday! He seems to be tolerating it well (medically speaking) and his blood gases this evening were apparently very good. While his body is handling the CPAP well, Nolan the being is not particularly psyched about it much of the time and he gets a little agitated. However, now that the large tube is out of his mouth and throat (small feeding line still present), he can really suck and swallow and… drumroll… cry! He doesn’t have much lung capacity to create volume with, but you can hear it for sure (a bit like watching t.v. on very low volume). The crying uses way too much energy and oxygen for a growing bean, but the pacifier seems to help calm him at times so he’s getting a fair amount of use out of that. And, we hope that with a bit more time he’ll get used to the new setup.

We’ve taken a number of pictures to share as soon as we can get them posted, but don’t expect much. The CPAP actually makes it harder to take a good picture of Nolan because it goes up from his nose and divides his face in half (think of an elephant with its trunk raised to trumpet)… Plus, all the pictures seem to be pretty blurry.

Just wanted to share the great birthday news before I went to bed.

-Maria

Sunday, December 17, 2006

a step back

Nolan had an episode last night that once again scared his parents to death and has reintroduced him to the ventilator.  He has the ventilator tube back in his mouth, but seems to be handling it pretty well.  His o2 needs have been very low and the pressures are low as well, so low that the docs are already talking about extubation and getting him back on the cpap or the canula.  his weight gain seems to have picked back up even after a night of no feeds. however, today he is getting 30 cal fortified breast milk at 9.5cc per hour and seems to be doing well with it.  so in the next few days he will have another eye exam and the possbility of getting him off the ventilator is very nearby.  he is on antibiotics to ward off the chance of pneumonia which hopefully is just a precaution.  so today all seems to be well and to be honest Nolan handled the last 24 hours a lot better than his parents did.  peace to yall and thanks to his papaw and mamaw for their visit, love and help. 

Wednesday, December 20, 2006

another stab at the cpap

so nolan has had a good few days, his chest xrays showed a clearing from the consolidation that was either a result of or the cause of his last scary episode.  (let’s just say it was scary, kara and i would rather not go through the details) so as of 5 minutes ago, nolan was extubated and put on the cpap with hardly a hitch or hiccup.  his mom and mimi are with him now as i write these words, im trusting everything is good and that the little butterbean is overjoyed to get that tube out of his throat again.  he has had a little weight gain after a little weight loss, so his numbers are still about what they were when last quoted.  eye exams have shown an improvement in his right eye and a holding pattern in his left.  the optometrist will recheck him on friday.  nolan really hates his eye exams, just like most sentient beings on this planet, so lets hope and pray its one of the last ones.  his antibiotics ended yesterday, so the docs think he is out of range of pneumonia (which could have resulted from aspiration from his scary episode) and his chest xrays confirm that he is keeping away from mr. p-neumonia.   keep your prayers and fingers crossed that nolan will hold on the cpap for a couple of days, maybe surpassing his last record of around 3 days. nolans dad had a good birthday with nolan relatively healthy and basically on the room air equivalent of o2 supplement.  peace to yall. 

Friday, December 22, 2006

sweetness

Nolan basically went straight from cpap to the hi flow canula on wednesday.  He was pretty irritated with the cpap so the docs moved him on up to the next stage and he has been doing really well with it.  he’s gaining weight, slowly but surely, and is currently at 1597 grams, which is a solid 3 1/2#, his o2 supplement hangs out at around 23% (room air is 21% o2) and they reduced the pressure this morning and he still seems to be doing well.  he is due for another eye exam in 30 minutes which translates to whenever the optometrist arrives in hosital time.  he has only had a few doses of morphine in the last 2 days and his current sedative of choice is sugar water and tinkly music, both great alternatives to m.  kara and i are encouraged but wary and are envisioning a healthy little bean for christmas morning.  hope everyone has happy holidays.

Monday, December 25, 2006

Merry Christmas!!

Nolan wishes all of his friends a very merry, happy, and healthy Christmas!  (The NICU is pretty Christmas-oriented, so he hasn’t yet been introduced to Hanukkah, Kwanzaa, or any other winter celebrations… you’ll have to wait until next year for his glad tidings for other holidays.)

Nolan’s Christmas present to his family (besides his beautiful self) was to imbibe mother’s milk straight from the source for the first time, on the first try.  As many of you may have experienced personally, that’s not a given even for term babies, and it’s definitely not a given for a baby who has had a tube in his mouth preventing sucking for the first three months of his life.  Nolan gave it the old NICU try yesterday, and successfully got the milk into his mouth and down the correct pipe.  Yay for knowing when to breath and when to swallow!

Nolan’s uncle Shannon is visiting for Christmas — another celebration!  The great hat in the picture was made by aunt Amy and gifted to Nolan on her recent visit.

Love to all of Nolan’s friends out there…

-Maria

Friday, December 29, 2006

…and an approaching (happy) new year

Nolan’s week has been good, he broke 1700 grams yesterday, has been weaned to 1/2 litre pressure with a concentration of 23% added o2, and has jumped from his warmer bed to a crib and then to an isolette in a matter of days.  the docs are very positive about what has been transpiring of late.  the little bean has been doing a whole lot of things basically on his own, breathing, eating and growing.  he has been doing well with nursing and is taking a bottle when kara is not around, he still has some coordination of breathing and swallowing to do but other than that he is getting enough nutrition to take off growing.  his journey from the warmer bed to the crib was amazing, but one of the nurses noticed he wasnt maintaining his body temperature very efficiently so they moved him into a climate controlled isolette.  the isolette is what most people are familiar with when they think of babies in the intensive care of the hospital, i think they are the same as the “incubator”, its a closed box with added heat which can help reduce noise/light so the babies can rest and grow more efficiently.  kara and i are riding the high but can’t help have some lingering worries and flash backs of scary episodes.  keep up the positive vibes, cause they are definitely working! nolan has had some good visits with his uncle doolittle (my brother shannon) and honorary aunties catherine and sar(ah) and looks forward to meeting all the lovely people who have been rooting for him for these last 3 months. 

Monday, January 1, 2007

HAPPY NEW YEAR

Nolan has amazed everyone in the past few days, he’s nursing well, breathing almost entirely on his own, gained (and lost and gained) weight and has been awake for periods of intense and thrilling alertness.  His Mimi and Dindin held him for the first time yesterday and were very excited.  He also got to spend some quality time with his Papaw and Uncle Doolittle this past weekend.  We all were very thankful that my brother Shannon was able to spend Christmas and the following week with his east coast family and give a shout out to his Auntie Amy who we wish could have joined us as well.  (But we know she enjoyed her week of junk food and movies.)  Other visitors from the west coast were former Chapel Hillians Lollie and Savannah, it was great to see them and have them back in the triangle for a few days.  Thanks so much to everyone keeping him and us in their daily thoughts through all the dark and bright days in 2006.  As we open the first day of the new year we want everyone to know how much we appreciate your support.  Please keep thinking growing thoughts and pray for continued good health and steps forward for the little critter.  We hope 2007 will be the year of the Bean.   

Monday, January 8, 2007

Butter(bean)Ball

Nolan has busted through the 4# mark, weighing in at 1850 grams last night at midnight.  He is feeding very well and spends long periods deep in sleep.  We are beside ourselves with happiness and pray that we have a steady progression towards taking the little critter home.  The docs have thrown that word, “home”, around a little bit which both elates us and scares us to death.  We have a lot to do to prepare 137 Windsor Circle for the arrival of Superbean, and Kara and Nolan’s Mimi have started the ball rolling with a crib, changing station, mobiles, clothes, etc.  He still has (at least) one more surgery, the reconnection of his intestines, which will require some recovery and healing.  We hope everyone is having a wonderful 2007 and again thanks for everything everyone has been doing to nudge Nolan along in health and happiness.

Monday, January 15, 2007

Four whole months!

It’s true, Nolan had his four month birthday yesterday, and he looks great!  He weighed in at 2100 grams (4 lb, 10 oz) – that’s four times his birth weight! He’s sleeping in a crib and the copious medical machinery has largely been replaced by real baby toys like mobiles and mirrors. 

With the ventilator gone and Nolan more stable, it’s not a multi-person task to pick him up.  When he’s upset, Kara can pick him up and see if he wants to nurse.  He can usually be transferred to someone else without setting off alarms, so Ronan and Kara can both hold him in one visit.  This is a huge and welcome change from a month ago!

In other good news, Nolan has been moved to a new pod, where not only is there a window, but he is next to it.  That makes it a lot easier to take pictures to share.  In an attempt to remedy my commented-upon slackness, I’ve posted some more pictures in the gallery.  I have a number to sort through from the last month, so if saucy Caroline wants to help me get them uploaded, I stand a chance of making it through the backlog.

Now that Nolan is past the 2 kilo milestone, the docs have started talking about scheduling the surgery to close his stoma from the colonostomy that was performed when he was four weeks old.  Right now, they’re saying it will happen next week.

All in all, we can see pretty clear and miraculous progress happening, even as we consider the hurdles yet to be faced.  Yesterday, Ronan and I met the parents of a girl who was born on January 3rd, a few weeks younger than Nolan was at birth and weighing just a hair less than he did.  It was nice to be able to show them the progress Nolan has made from a similar place, and hope that it made a positive outcome feel more possible for them.  Please keep their baby in your thoughts and prayers.  It was just a few months ago that our family was struggling with many of the same problems, and your love and prayers made all the difference for us and Nolan.  It is truly a blessing to have such wonderful friends.

-Maria

Friday, January 19, 2007

Lil’ Quick News Flash

Nolan weighs in last night…(drumroll, please) at a little over 5 pounds!  we are very excited about so many things, there is talk of him coming home in the foreseeable future, possibly mid february, if everything stays the current course.  There is a lot to happen before then but I just wanted to get the news out.  and to answer Peters question, yes he is over a month past his original due date, which was december 6.  keep those positive vibes coming, they are definitely working.  thanks to maria for the last round of photos and for so very much more.

Wednesday, January 24, 2007

(A) Big Day Comin’

Nolan is sweetly sleeping at the moment, apparently he was very alert this morning and tuckered out right after nursing with Kara.  He is around 5 #, 5 oz after a couple of days of weight gain and fluid loss.  He is back on diuretics because he was retaining some fluid which started to hamper his breathing.  The diuretics are really working and Nolan is peeing up a storm.  All in all things are going well.  Next Tuesday Nolan is scheduled for surgery to reattach his intestines which were disconnected way back in ancient history to remedy his NEC (look back through the posts for info on this).  Also on the schedule is putting in a g-tube or mickey button.  The g-tube is an opening in the stomach wall and the skin outside and is for giving Nolan fortified milk directly into his stomach to insure his continued growth.  He has had some issues with swallowing and isnt too fond of the taste of fortified milk from the bottle, so the doctors are advising the g-tube as a simple solution.  Kara and I are still deciding whether or not to go with this, we are hoping Nolan will take to bottle feeding like he has to breast feeding, but the docs think he will not organize all the sucking and swallowing in a week.  Unfortunately, Karas breast milk will not provide enough calories for him to keep growing at the rate he is going now.  He is getting around 90% (guesstimation) of his nutrition from his feeding tube and the fortified milk, which optimistically is being reduced to 24 calorie fortification today (which is one step closer to 20 calorie mommy provided breast milk and a step away from the g-tube).  So keep us in your thoughts especially next Tuesday and the following days and envision a speedy and healthy recovery for the Superbean.  We are.  

Friday, January 26, 2007

photo update

So many cute pictures — where to start?

Nolan is fighting sleep these days.  He spends a long time in that twilight phase where he seems on the edge of a coma, then pops awake and interacts for a few minutes before drooping back towards zzzz-ville for a few minutes before….  you get the picture.  So here he is, fighting the full closure of the eyes. 

He’s also getting better and better at holding on to his pacifier by sucking.  The other day, I saw him make an impressive save: the pacifier was about to fall out of his mouth, with the handle side about to win the battle of gravity with the little bit that was still in his mouth, but he made a sudden slurp and the pacifier popped right back into place!  So, good progress on the sucking strength front.

He’s loving his mobile, and he has very active hands, especially when he’s watching the mobile.  He’s working on grabbing things, albeit at a very clumsy stage. 

He’s developed a bit of a preference for looking left, so they’re working on keeping interesting things to his right so he’ll start to overcome that preference.  I think this is a pretty common occurrence with babies in nurseries, where they spend a lot of time facing the same direction in a crib.  I think it’s also pretty easy to overcome with a focused effort.

Nolan’s hearing test was great, and his latest eye exam showed the eyes improving (blood vessels regressing).

And just to lighten up your day, I wanted to share a picture of the clown who I caught impersonating Ronan last weekend.  What’s the consensus out there about earliest clown memories: good or bad? 

If you click through to the bigger picture, you can see the mobile which Nolan likes so much.  It gets in the way of pictures, except when it makes the picture…

More pictures in the photo gallery.  Enjoy!

-Maria

Monday, January 29, 2007

tomorrow is a big day

please keep nolan, kara, and me in your thoughts tomorrow.  pray the surgeons are on their game and the anastethics(?) do what they need to do and no more.  please send vibes of strength, patience, hope and love our way, just like so many of you have been doing for the last four months plus.  peace.

p.s.

the surgery is scheduled for 3pm (just letting you know so no one is worried that there’s no news until late afternoon). we’ll update as soon as we can after he’s out of surgery. -maria

Tuesday, January 30, 2007

ahead of schedule

so Nolan’s 3 pm surgery got bumped up to 8:30 am this morning, so with hurried dash, neighbor’s and mimi’s (grandma carolyn) doggie daycare and may may’s (auntie maria) floor construction consultation +(lots going on at 137 windsor circle), kara and i were at the hospital in time to spend a little time with him before his surgery.  He pretty much slept the whole time.  now he is back in the nicu having done well with surgery and still in the throes of anasthetic sleep. he did have some blood transfused, but all has been a good report so far. reattached bowels, g-tube and all.  we will keep everyone posted.  namaste.

superdupernolan

What’s another surgery, in the grander scheme of life? That seems to be Nolan’s thinking, or dreaming in this case. He’s moved on already, and judging from this pose he held for a while tonight while sleeping, he’s planning for the future. What, exactly? Perhaps his first Superman costume? Leading a rally on the Mall in DC? Shaking his fist at The Man? Letting Sambuka lick his hand? We’ll never know what he was dreaming about, but it was darn cute.

There was some indecision this afternoon about whether to leave Nolan on the ventilator overnight, but he decided to end the discussion by extubating himself. I’m sure that was a bit of a crisis in the moment it happened, but he seemed to be doing pretty well off the ventilator and on the nasal canula this evening when I was there (though he’s not quite back at his pre-surgery respiratory state). He was in a bit of pain this afternoon and seemed to be waking up distressed periodically this evening, but that seems like a normal reaction to surgery to me (that’s a certified non-medical opinion, there). He’s on some pain meds, but they don’t have him totally socked out.

At this point, I gather they wait for him to have a bowel movement and then will begin feeding him again. I guess you don’t call it oral feeding if it’s via the new gastrostomy tube (which comes out of his stomach), but it’s not i.v. nutrition, either. Anyhow, Kara and I supposed that they would slowly build him up to his former level of feeds, but the process and timing of that is not clear… like so many things in the NICU. We’ll know when it happens, if not sooner.

So that’s the scoop. Thanks for safeguarding Nolan through surgery with your love, prayers, thoughts, and support. The last message, from Sar, took us over the six hundred comment mark! Wow, what an amazing community of friends Nolan has.  Ya’ll are totally fab!
-Maria

Thursday, February 1, 2007

Back on the vent

Nolan seems to have tuckered out yesterday and had a couple of “events” that led the docs to reintubate him last night/early this morning.  He was having trouble maintaining his breathing and heart rate which could have resulted from the sedation he is on for pain maintenance, in addition to all the extra fluid he is receiving through his iv and the fluid his body and lungs are retaining, in addition to some potential collapse in his lungs.  no one knows for sure, but most believe its a combination of a lot of factors, the biggest contributor being the fact that Nolan is a small, premature baby who already spent a long time on the ventilator and just underwent major surgery.  a tall order even for a superbean.  kara and i feel a little better after hearing the docs say this is a bump in the road, not a tremendous setback, and that they believe nolan will be doing better and better as he recovers from his surgery.  Still it is undescrbibably difficult to see your little baby in pain and seemingly in a place we thought we had long passed through.  Keep us close as usual and pray for Nolan to rest and regroup.  Again and again, thank you all for your love and support. 

Saturday, February 3, 2007

the straight poop

nolan was officially extubated by officials this morning at 10 am and is doing great with it.  back on the nose canula, oxygen saturation at basically room air, and a very low pressure to help him along.  very good news. but the real news is that on rounds, immediately after the nurse practitioner said it may take a few more days for nolans bowel function to start back up, his nurse, kara and i heard what can only be described as a “fart”, and upon closer inspection (opening his diaper) low and behold:  POOPY!   this is significant because it means his bowels are doing their job and very soon he will be able to start feeding again, which means we will be able to try out his g-tube and kara can nurse again, which means he will keep on growing and come home and…the sun is shining bright in chapel hill and the day is much easier than the couple before.  a homerun was hit with that poopy, the shot heard round the world. 

Thursday, February 8, 2007

(good) four letter words

The H word has not only been uttered, but they’re actually getting specific about it. On Monday, Kara & Ronan got the word that Nolan would be (expected to be) ready to go home in TWO WEEKS!! This is exciting but has many other associated emotions as well. Stress would be one of those emotions, since there is much preparation to be done. Nolan came so early that the nursery had not been set up for him, and since then, all energy has been focused on the hospital and, at home, on keeping up with the basics of life (food, income, dog love…), so now there’s a bit of home prep to do.

Home still remains in the realm of the future, and predictions. We do have a bit of very exciting news about an actual event: a couple of days ago, the nurse took Nolan off the nasal cannula! He was doing really well on almost no assist from the cannula, so she thought she’d just give him a try off it, and he did fine!!! As far as I know, he has stayed off the cannula since them, even through a very unhappy and agitated afternoon yesterday (experiencing a bit of a withdrawal from the pain meds).

As a result, when Kara gave him a bath the other night, she got to see him completely naked and unattached to machines for the first time! His little face is free and clear and can be viewed in all its cuteness without obstruction…

This also means he may be able to go home without oxygen, which makes things a bit easier — less to haul around and maintain and have in the way.

Nolan has his g-tube for feeding, but it has a little “button” cap so he does not have a tube hanging out all the time. He can be burped through the g-tube, which works very well. He’s back to regular breastfeedings.

Oh, and how ’bout dem Heels? I think Nolan lent them a bit of his super-comeback, never-give-up-the-fight spirit last night…

All in all, lots of good news coming our way this week. Stay focused on growth and steady progress!

-Maria

Friday, February 9, 2007

more good news

Yesterday, Nolan had his regular eye exam and head ultrasound. Both were good reports: the eye exam showed continued improvement, and the head ultrasound showed a normal brain. I’m a little torn about sharing this news about the ultrasound, because it came through several people before it got to me, so there’s always the chance it will be revised if I didn’t understand it correctly… but it’s such good news that even if a bunch of caveats were attached later, we’d still be happy jumping beans!

They’ve been monitoring his brain since they found the grade 4 bleed on one side in his first few days. As the blood disappears (very very slowly), they look for cysts and scarring that would indicate permanent damage from the bleed. If they saw damage, they still wouldn’t know what that meant for specific developmental problems, but it would mean that he was much more likely to have some problems later on. As I understand it, the report of a “normal” brain means that there is no evidence of the bleed (either blood or scarring). I’m not sure whether scarring or cysts could still show up later or not, but it’s great news for now!!

Go Nolan Go!!!

In other news flashes… yesterday, Kara and Ronan got the news that they are targetting NEXT THURSDAY to send Nolan home! That would be the day after his five month birthday.

Happy dances all around,
Maria

Saturday, February 10, 2007

closing in…

About an hour after my last post, I got the news that Nolan is ready to come home now.  During rounds this morning, the doctor said he was ready to begin the discharge process!  Tonight (Friday night) Kara and Ronan are sleeping at the hospital in a room with Nolan.  I assume the hospital does this to make sure they have a chance to step through the nighttime routines once while staff are available to answer questions, and to give them some kind of transition space.  After the night at the hospital, they have a “rest night” at home, then Nolan will come home with them on Sunday.  Sunday!

Wednesday, February 14, 2007

Happy Birthday, Nolan!

I’ve gotten lots of emails in the last few days and realize that it’s not clear what happens to the blog now that Nolan is home. Don’t worry, we’re not going away! As there is less and less news (and thankfully fewer crises to ask for support through), I’m sure we’ll post less often, but we’ll keep updating because Nolan’s story is not over by a long shot. It would be very ungrateful indeed to receive such amazing support through rough times and then not share the joyful times as well, so we will make sure to share the pictures and stories of the fruits of all the prayers, love and energy that saw Nolan to this point.

Kara and Ronan don’t have internet access set up at their house at the moment (part of rearranging to get ready for Nolan to come home), so they probably won’t be posting much for a while. I’ll try to take up the slack there…

Now, on to the news.

Nolan did come home on Sunday afternoon, and it was a joyful day all around. There were beautiful colorful greetings and banners and treats and gifts from friends, and Nolan slept through being held by many happy family members (all grandparents were present, plus Deb and myself). Neaka and Sambuka (the canine kids) were unimpressed, having been well-prepared by five months of scent-filled clothing brought home by Kara and Ronan. In the evening, David (Kara’s brother) and Leon and their daughters Coleman and Logan came to visit. Coleman and Logan were Nolan’s only close family members who hadn’t met Nolan (NICU rules, again), so they were very excited to see him.

The forward change in the schedule for him to leave the hospital happened quickly enough that several of Nolan’s primary nurses didn’t get a chance to say goodbye to him. Hopefully they’ll check in here and follow his progress like Tara has! We can’t thank the staff enough for the loving care they gave Nolan on his journey.

Nolan has had two full days at home now, and has had his first trip to the doctor (though the hospital was kind of a five month long “trip” to the doctors’ office). He’s already grown (in length, not weight) since leaving the hospital! So much accomplished since the four month birthday… In the last month, Nolan has tacked 25% more onto his weight (now at 5 lb, 13 oz, I think), said goodbye to the ostomy bag, broken in his new g-tube, kicked the supplemental oxygen entirely (hurray!), and COME HOME! Happy Birthday, Nolan! Good work, little man.

For some reason, I can’t insert into this post the pictures I just uploaded, so you’ll have to visit the gallery to see the pictures of Nolan’s homecoming.

-Maria

Sunday, February 25, 2007

Sorry!

…a lot bit late, here’s the update…

Nolan is doing great, and life on Windsor Circle is beginning to take on the rhythm we had hoped for. A few stats to start: Nolan now weighs 6 lb, 4 oz and is 18 inches long. He’s doing better and better with breastfeeding — nursing more, longer, and stronger — though he is still needing a significant amount of supplementation. It looks like progress there will be slow but steady. Nolan’s only truly unhappy times seem to come from some intense bouts of gas pains. It seems that he has a couple of hours every other day or so where he’s pretty miserable, and periods in between where he’s uncomfortable, but otherwise he’s a happy little boy. He does still require two-handed holding most of the time: one hand to hold the pacifier in (or rather, keep popping it in) and one hand to pat the butt continuously.

Nolan is still a bit small for his carseat, so he’s not very comfortable in the car, and he can’t be in situations where he’d be likely to be exposed to sickness (like a crowded room), but he has gotten to go on a few outings: a trip to his aunties’ future house, a family birthday dinner, and of course a few trips to the doctor. He also gets to go on nice long walks in the woods when the weather is nice, like it was this week!

Progress on overcoming the left-side preference has also been slow but steady. He’s pretty good about looking to the right with his eyes, but he seems to be less inclined to move his head to look to the right. Sometimes it takes a bit of work to snap him out of a somewhat hypnotic focus on something to his left, but lots of attention is being paid to enticing him to look right.

The best bit of news of late has been from the eye doctor on Friday, who said that Nolan’s retinopathy of prematurity has completely resolved!

So, Nolan is just cruising along doing his growth thang, passing lots of little milestones along the way. Meanwhile, Kara and Ronan are settling into having Nolan home. The supplemental bolus feedings are pretty time-consuming, and feeding in general takes a lot of time and attention. Despite that, life is much more “normal” than when Nolan was in the hospital. Ronan is able to focus on his work much more than he could when each visit with Nolan took a couple of hours at minimum. He’s got a show at the NC Crafts Gallery starting March 1st (stop by and say hi at the opening on the second Friday of March!), and has been getting in a lot more time in the studio. It’s a bit of a stretch (to say the least) for Kara to get to the smithy, but she’s been taking some pictures — a craft that is at least a bit easier to pursue in the snippets of time she has her hands free.

Most important of all, even though they are getting much less restful sleep, Kara and Ronan are much happier and more relaxed with their little babe home.

Keep up the chant of “go, Nolan, go!” especially through the cold season. We need to keep those lungs healthy so all the energy can go towards growth!

Nolan’s grandma Mimi is going to help me keep the site updated, so we’re working on getting a more regular schedule for the updates… Thanks for sticking with us through it all.

-Maria

Monday, March 12, 2007

One month on the Circle

Yesterday was one month exactly from the day Nolan came home. We celebrated the day by walking in the woods, watching the Heels become ACC champs and getting visited by nurse Tara whose best friend magically moved into the house next door to ours! It was a good day.
Nolan continues to do well. He has gained slowly but steadily, last Tuesday he weighed in at 6 lb 9.5 oz and is now 47cm long (compared to 28cm when he was born). He does pretty well sleeping at night, if we didn’t have to get up to change out his feedings we would be getting close to normal rest! One of the (very) few advantages to being in the NICU so long is they get the babies on a schedule for you… We are making slow progress on getting him on all oral feedings, on good days he is at about 50/50, he is still on continuous feeding at night. We don’t feel in a hurry to get him off the pump since it is an easy way to get him good nutrition and accomplish the main goal of GROWTH. He doesn’t mind the pump and it can be taken anywhere like this morning when we took the dogs for a walk, imaginge walking, sleeping and eating all at the same time!
Nolan is also making progress developementally. With lots of encouragement from all his family he is learning there are cool things to see if you turn your head right and does so voluntarily now. He still favours his left and seems to be working towards being a southpaw but things are evening out. He seems to be focusing on objects at greater distances and doesn’t get “stuck” on an object to his left as often. He makes good eye contact with us and smiles more and more often which just melts us on the spot. He has also invented the fast paced, big action game of “Got your Lip”. We generally play early in the morning after a diaper change and nursing session. It involves lip grabbing, noisy encouragement and tickly kisses. It is a lot of fun for us as it seems like his first real interactive time and is maybe a glimpse at a sense of humour.
Thanks again to all for your support, prayers and words of encouragement (and food and clothes and diapers and cards and time and energy…!) We will try to keep everyone up to date, it is not so often that I have more than one hand free these days. I have to go, I hear the bean calling for MILK! with love, Kara (and Ronan and Nolan)

Wednesday, March 14, 2007

Six Dang Months!

Well, here I was concerned that everyone had given up on us and stopped checking the blog because I’ve been so lame at keeping it updated, but you’ve all gone and shown me that you’re far more determined than that, as obviously a number of you have already read Kara’s update.

Since Kara has given you the update, I’ll just share some pictures in celebration of Nolan’s Six Month Birthday. Wow, six months ago it was hot September, and now it’s hot March (didn’t anyone tell the weatherman that 80 degrees is a bit much for early spring?). Six months ago, Nolan got impatient and joined us a good bit earlier than was advisable, weighing just a bit more than a bottle of soda. Now he’s about 3 kg — almost six times more than he weighed back then. And look at that smile, would ya?

A week or so ago, Nolan got a button in place of the tube that was coming out of his stomach. Basically, this is just a flap (like a valve on a beach ball) that can be closed over his stoma, or opened to attach to the feeding tubing. He previously had a length of tube (maybe a foot long) that came out of his stoma and ended at a cap. They were waiting for him to be a certain size before they made the switch. Said switch came just in time, too, because the old tubing was starting to leak and causing lots of problems in the night with the continuous feeds (imagine slowly dripping milk into your baby’s bed all night). The new button was apparently tender for a few days, and I gather that the tubing that goes with it is supposed to be cleaned every three hours when in use (ie, all night) or it clogs, but overall the button is a good thing because it’s forward progress. It means Nolan is growing and moving along the path the doctors want him to. And, when not in use, it is less obtrusive and less likely to get tangled up in blankets and clothes (though, truthfully, the tubing was not nearly as “in the way” as I would have expected).

Nolan’s aunt Amy and uncle Shannon gave him a small gift that has been a big help — this pacifier. The dog is attached to the pacifier and helps hold the pacifier in his mouth (basically a prop). You’ll see the dog featured in many pictures because Nolan pretty much always has it with him. The hat was made by Nolan’s cousin Logan. It’s been fun to see what things Nolan has completely grown out of (like tiny hats) and what he has grown into, that it once seemed would never fit him. He’s still pretty little in the grander scheme of babyhood, but he sure seems big to us!

There are a few more pictures in the gallery — click through and check them out. I’ll post more as I get them, though I’ve discovered that the lighting at Kara and Ronan’s house is no better than at the hospital, so I’ve mostly got blurry pictures to share right now.

Happy birthday, Nolan!

-Maria

Sunday, April 1, 2007

we’re all fools for the bean

Nolan has discovered that he has hands, and that he can (kind of) use them, and also that they are interesting to chew on. He’s fascinated by ceiling fans and his parents’ voices. He’s growing (over 7 pounds now!) and, of course, he’s cute as a bean. But that’s no surprise, now, is it?

Nolan has a pretty cute smile and he shares it pretty often, especially when Mom plays games with him. Or just talks to him. Love that Mom action. Really, though, who wouldn’t?

Nolan still loves to be held and patted (or thumped) on the butt. The advent of hands-in-mouth last week seems to have made the pacifier a little bit less crucial for him. Overall, there’s not a ton of news, just a happy, growing baby. We’ve got more pictures in the gallery, which the Haigler-Davis family will especially want to check out.

And now, Nolan has asked me to let each of you know that this April 1st he wants you to stop foolin’ around and join him in spending a couple of hours in front of the television cheering the Tar Heels as they beat Tennessee. (Also he wants you to hold aside Tuesday night for the final victory of the women’s basketball season. Go Heels!)

Good thing that he learned to use those hands for cheering just in time for the championship!

Wednesday, April 18, 2007

More photos, less news

Nolan passed his two months at home mark with flying colors. He is now over eight pounds, at least two inches longer than when we first came home and flirting with the best of them. He tracks, reaches, is beginning to grab and has a lot to say though the words are a bit garbled at this point; Sometimes I am pretty sure he is using some foul language or perhaps engaging in his own version of the “dirty dozen”, he must’ve gotton that from his fathers side of the family…We are loving having him home, the fact that I get to snuggle with him all day is so amazing. Ronan is working a lot in his studio and teaching several classes, generally being the breadwinner, as well as being at home whenever he can to hang out with us.
We still are not taking Nolan out in crowded places as he is still very suseptible to respiratory and intestinal bugs both of which would likely put him back in the hospital. The statistic is that 40% of premies end up back in the hospital their first year out, the smaller and earlier they were increases the likelyhood they will be in that 40%. We hope to debut him sometime this summer.
The biggest news for this posting is the upcoming fundraiser/auction. Many of you have given time, work, donations, love and energy to this event which we appreciate and are overwhelmed by (in a good way). If you don’t know about this event go to www.friendsofnolan.com to check out the details. It will be held May 4th at 6:30 at the Durham Armory. There will be a silent and live auction, food, music and friends. Ronan and I are planning on attending and hope to see some of you wonderful folks there. Thank you to everyone who has helped with the fundraiser!
Check out the gallery for the latest photos. I guess I should say the latest uploaded photos as there are so many new ones taken every day. Take care all. Kara, Ronan and Nolan

seven (aka four) and counting…

Yep, Nolan the Bean had another birthday on Saturday. I had pictures all ready to upload but haven’t had a chance to post until now. He’s been out of the womb (OOW) for seven months, but I suppose we need to start getting used to referring to him as his “adjusted” age, based on what his birthday would have been if he were a term baby (mid-December). That makes him four months, adjusted… Gotta love it, just in time for tax season we start referring to Nolan like he’s a tax line item!

That whole adjusted age thang doesn’t really matter so much to all of us, who have been following Nolan’s saga for the last seven months, but it makes for fewer strange looks when someone at the grocery store asks how old Nolan is (”Oh, my eight pound baby? He’s seven months old.” and then you gotta explain the whole saga while your ice cream melts), and also reminds us that Nolan’s development won’t follow “normal” development guidelines — sometimes he’ll be ahead of his adjusted age, sometimes he’ll be behind his age… But, hey, we’re just thrilled Nolan has graced us with his presence!

Anyhow, on the subject of developmental milestones, Super Nolan (shout out to Alice!) is doing a pretty good job of holding his head up (better even than the picture shows) and he’s really moving his head around to check things out. He’s really interested in his hands: he spends a fair amount of time just watching his hands move, and he’s also working more and more on reaching for things, touching things, and generally beginning to use his hands.

He weighs 8+ pounds now, continuing the slow but steady progress that we all know and love. He’s still on supplemental tube feedings. He’s also starting to “talk” a lot at times.

I wanted to let all of you Nolans fans out there know that a subset of your number has been working tirelessly to set up a benefit auction for Nolan. More information is available at http://friendsofnolan.com, but here’s the teaser: these folks really have worked tirelessly to set up a great event — hundreds of pieces of hand-crafted artwork from artists near and far, with fabulous food and drinks, live music and a great auctioneer, and a silent auction before the live auction to get everyone warmed up. They’ve arranged for all donations to be tax-deductible, and the funds will be held for Nolan’s care and expenses, so you’ll be supporting a great cause (near and dear to all our hearts!) while you’re having a great time. You may get a great piece from your favorite artist, or you may discover a new favorite artist — since many of these donations are from Kara and Ronan’s colleagues, you know there will be lots of great work in there either way! You’ll also get a chance to meet some of those other Nolan fans whose names you’ve seen over the last months in the “recent love” column. All this fun will be had on Friday, May 4th, so get the date on your calendar (just a couple of weeks away!) and get the details, including pictures of some of the pieces to be auctioned, at the website…

More cute pictures in the gallery — they look best if you click through to the full picture and then use “next” to look at them all… The thumbnails clip parts of the picture so if you don’t look at the full picture you’ll miss, for example, the great look on Ronan’s face as he says hi to Nolan… Check it out!

Hope to see you all at the auction…
-Maria

Thursday, May 3, 2007

hope to see you there

This is just a quick reminder, in case you’re like me and time slips right by you and oh, is it May already?

Friends of Nolan will be gathering from all around on Friday at the Durham Armory for a very festive auction.  There are literally hundreds of pieces of art waiting to be auctioned off, and even if you don’t bid on anything, there’s much fun to be had with music, food and drink, a real live auctioneer whocantalkrealfast, lots of amazing art to view, and other friends-of-Nolan to meet.

Hope we’ll see you there…

-Maria

Sunday, May 13, 2007

happy mothers day!

Nolan says Happy Mothers’ Day to all the moms and grandmoms and great-grandmoms and, heck, all the dads and aunts and uncles and cousins and friends and everyone else who is involved in raising children! But, today, most especially there is lots of love and appreciation for the moms out there…

Tomorrow Nolan will be 8 months old, and you can see from the picture that he weighed in at 9lb, 1.5oz last week at his weekly weigh-in. Nolan is working hard at getting big and strong. He’s also getting more and more interactive, using his hands and making lots of noises. Kara and Ronan have been doing lots of physical therapy with him and he’s really doing great with it. The physical therapy is stuff like having him do pushups on your chest and getting him to turn his head all the way to both sides and that sort of thing — mostly aimed at getting him to use both sides equally and gain strength and flexibility in general. A bit of catchup from spending so long in a bed when the other kids were out playing…

Apparently Nolan went to the Farmers’ Market yesterday and loved it. He was facing out in his carrier and Kara said he was kicking and talking and generally getting very excited. As he gets bigger and stronger, he’ll get to go out into open spaces with people even more. Undoubtedly followed by a bit of quiet time with the fuzzy friends, like this.

The auction on May 4th was a huge success! Immense thanks go out to all of those who participated by organizing (an unimaginably major commitment!), donating, volunteering or attending. I don’t know exactly how much was raised, but I do know they definitely surpassed their goal. I think more details may be posted on the auction website soon for those who would like to know more.

Monday, May 28, 2007

big thanks and BIG BOY news

sorry this end has been silent so long, lots to do and little time to do it with baby nolan growing up so fast. he will be 6 months in a few weeks and has just broken the 10# mark! he’s taking yogurt and pears from a little green spoon, talking and belly-lauhing a lot! kara is doing a lot of pt and ot and ronan is trying to get enough pots together to keep him (nolan) in diapers. the auction was a huge success and eternal thanks to all those involved. nolan is crying gotta go.

Friday, July 6, 2007

Comin’ up on the 7/10 month mark

Howdy to all you faithful folks. Yet again we are sorry it has been so long since we updated this fabulous site. It seems super hard to get to the computer these days and even harder to be on it for any length of time.

Nolan is doing quite well. He is around 11 and 1/2 lbs now, still not on the regular growth curve charts but he has his own curve going, I guess he is not into percentiles! He is chowing down on lots of different fruits (all mashed of course) as well as sweet potatoes, rice cereal, avocado and yogurt; He will eat anything if there is yogurt in it. He has moments of sitting up with little support and we are showing him the basics of crawling though I find myself torn about him picking that up too quickly… He laughs a lot, he has a fabulous belly laugh that I will do anything to hear. And he is finally getting a decent covering of hair so that the doctors and nurses will stop coveting the beautiful veins on his head (they wanted to stick IVs in them).

We all went on our first big trip in June to a family reunion in the TN mountains. Ronan and I were a bit nervous about how well he would travel because of some not so great short trips we had taken but Nolan held up like a champ. He had a great time once we met up with the family, all the attention he could want. It was a great time for all of us and a good lesson for Ronan and I, we have to constantly relearn what Nolan is capable of ( duh, he’s the Super Bean).

Last but not least is the Auction news. The final tally was a whopping 39,000.00! Talk about a great success… We thank everyone from the bottom of our hearts and down on our knees. Amazing and Beautiful.

If you are still checking in on the site we would love to read a little post from you, a quick little “still lookin’ in” is all you need to write, we just love knowing you all are out there. Take care all. love, Kara, Ronan and Nolan

Friday, August 10, 2007

finally, a few more pictures…

———-

I haven’t managed to get many pictures posted, but there should be enough to convince you that Nolan is indeed growing up… and that he has a fabulous smile. He’s a charmer, that one is.

Click through to the gallery to see the rest of the pictures. I promise more will come before September 14th. Can you believe it’s been almost a year already?

Friday, September 14, 2007

one blessed year!

Today is a big celebration day! At one year, Nolan is doing great. He’s 14 lb, 11 oz now… That may not seem like much for a one year old, but it’s THIRTEEN TIMES his birthweight. How many other one year olds do you know who have achieved a feat that impressive? Not many, I bet (unless you work in the NICU, in which case you don’t count for this contest!).

Speaking of the NICU, Nolan has gone back to visit several times and he wants to send a big shout out to all the hardworking folks there who didn’t give up on him even when times were really rough. A year ago, Nolan’s arm was so tiny that Ronan’s wedding ring could go around it all the way up at the armpit… loosely. Hard to imagine, huh? Those amazing folks at the hospital did their amazing thing and look at amazing Nolan now.

Nolan is doing all kinds of new stuff. He’s sitting up and balancing himself there. He’s talking — last week it was about bababababababa and this week it’s about dadadadadadadada. He’s just figured out that he can shriek, and he does that randomly, sometimes for fun and sometimes because he’s mad. He’s eating “solid” foods and smiling lots and snuggling up for love. He’s working hard at his physical therapy and learning new things all the time. He’s a pretty amazing and great and fun kid.

So thanks for hanging in with us through this first year and all its ups and downs. It’s been a wild ride but we’re pretty pleased with the sailing at the moment. I’ve uploaded a bunch of pictures, just in time for the deadline, in true Ikenberry fashion. I took a few more Thursday and I’ll get those up later in the birthday, plus a special celebratory surprise, so check back. Have a big party for Nolan today so we’re celebrating around the world!

Monday, October 22, 2007

and things are good

Nolan continues to do well. We always hear “he looks great” when we visit one of his many doctors. His growth is catching up but still not what his endocrinologist is wanting so we may be looking at growth hormone therapy in the future. The  doc also mentioned the probability of an MRI to look at his pituitary (before he turns three), he said it was his hunch he would need one but then said “I could be wrong”, so once again it is up to Nolan. We are also looking at a surgery in March to fix his hypospadia. He has the most severe form of it which sometimes takes multiple surgeries though no one has said this to us (I read it on the internet). So, in the spring we may be sending out a “good vibes” call once again.

Nolan has begun eating some solid foods. He chowed down on some baked chicken I was kind enough to share with him and he seems to really like cheddar cheese. Sometimes he will pick things up himself, more often he wants me to put it in his mouth. So I get torn between him getting the calories (gaining weight and being able to get off the G-tube) and knowing he needs to learn to finger feed; So far I have mostly given in to feeding him.

He is learning to pull up and to stand while holding onto something. He is very good at the standing part and does well with holding on. We are trying to teach him what happens when you let go without him cracking his head open… Randa, his physical therapist is working with him on the transition between sitting and standing which he seems to be picking up but still needs a lot of support.

In general he is a real firecracker and can hardly sit still now. I think all his energy will help him be motivated to figure out how to get from place to place and to build up the strength to do so on his own. He is generally good natured, always ready to laugh or at least smile. He takes a few minutes to warm up to visitors but once he feels comfortable he will put on a show!

Speaking of which for those of you who haven’t found out, if you go to his photos (the most recent ones, I forget the title of them) and click on the one where the photographer was shooting down on him and he is looking up, sitting in a chair, a video will play. Maria put together the video from various times she was over, it is not too long and has some great moments. I like watching it and I get to see him every day!

Ok everyone. Take care of yourselves and once again (and again, and again) thanks so much for all the support over the last year plus. I know all that love had a hand in his amazing recovery not to mention how much it helped us .

Wednesday, November 14, 2007

a big step

so last week our pt gave us the go ahead to take Nolan off the g-tube calorically (hmm, maybe not a real word…). What that means is he gets all his calories by mouth while still getting some fluids (pedialyte) by g-tube until he increases his liquid intake. Once again this is a fine balance since we don’t want him dehhydrated but we need him to be thirsty enough to want to drink…

I was worried about his weight gain because it hadn’t been that great for a couple of weeks and now he would be less 160 (guaranteed) calories. He has become pickier with food in the last few weeks (someone taught him “No” and it wasn’t me!); He didn’t eat all that well last week, there were several days he didn’t meet his calorie goal and his fluid intake suffered a bit as we adjusted to the new schedule. So, as I said as we went to his weekly weigh in I  was just hoping he hadn’t lost weight so we could stay off the g-tube.

Tell us already you say? In typical Nolan fashion he gained 6.5oz which is close to the most he has ever gained in a week. I have no idea how that happened but I am gonna take it. I am also going to try and relax about him refusing food or not meeting his calorie goals and figure he will eat if he is hungry. Let me emphasize “Try”.

I think that may be all the news for now. He remains the most beautiful and amazing being I have ever known.

take care all. Kara, Ronan and Nolan

Sunday, January 6, 2008

New Year for Nolan

So, you would think with things having settled down now that we would be able to post more often; Well, I guess we have to think again. So, we hope everyone had happy and healthy holidays and that 2008 has been great so far. We do have pictures to post but I am not sure we can do that without help from Maria who is currently driving across the country with Deb. Later in life Nolan will be dreadfully ashamed by his parents technological ignorance.

We had a nice holiday. Before Christmas Ronan’s family came down for a few days. Nolan had a blast playing with his Mawmaw, Pawpaw, Uncle Doolittle and Aunt Fab. He got some nice new outfits, some cool books and fun toys from his western Carolina family. Then on Christmas day we went to my parents house where he once again reveled in being the center of attention. He got more fun gifts including a crocodile xylophone, a “Pop goes the Monkey” and a stocking made by Maria. Oh, and his Aunt Fab (Amy) made a great video that we will try to get up on the website.
Nolan has finally taken flight and is crawling all over our (dirty) floors. He pulls up and cruises around our new couch and generally wants to be on the move all the time. I don’t have any idea how house wives ever did everything they needed to let alone keep the floors clean. In any case, Nolan love to crawl and giggles the whole time; he has also started playing chase, that is we chase him, he crawls as fast as he can, he turns to see if we are coming and when he sees we are he squeals and takes off again. It is a lot of fun for all of us. Ronan and I need to readjust our expectations/habits (once again) because you can look away for a second and he will be across the floor, surprise!

We have taken him off the g-tube completely now. It may be only temporary depending on how well he picks up on drinking. He has definitely started taking more juice though his bottle intake has stayed about the same. We just have to keep an eye on him to see if he becomes dehydrated. He has lost some weight because his activity level has risen so much but our doctor isn’t worried about it yet so for now we remain free of the tube.

Well, I have to sign off and get some things done. Happy New Year everyone! Kara, Ronan and Nolan

Wednesday, February 13, 2008

One Year Home

On Feb 11th Nolan has been home with us for one year! He continues to blow off all statistics by not returning to the hospital, not going back on oxygen, eating well and acting like he never had a massive brain bleed. We tell him how amazing he is many times a day.

He is completely off the g-tube now. His liquid intake has greatly increased, especially just in the last week, he drinks almost too fast sometimes. There was a month where he lost weight and we started hearing rumors of returning to the g-tube for calories. I was determined not to go back to that and started bringing Ben & Jerry’s vanilla ice cream home to make shakes. The only ice cream I could find with more calories is Hagen Das but it wasn’t significant enough to override my loyalty to B&J. Almost needless to say, the shakes are working and he is up to 18 Lbs 4.5oz as of the 12th. He is drinking the shakes from this cool cup his pt brought him, it has a straw that keeps the liquid up near the tip so he doesn’t have to work so hard for a drink. The only bad thing about all this is the temptation a pint of Ben & Jerry’s is for me; I am doing better about it now but the first week I have to admit to helping finish one off. Mmmm.

We don’t know when the g-tube will get removed. We have certainly passed the “time test” that is required but they won’t take it out during cold season. They may want to leave it in until his (final?!) surgery is over, not sure. We will know more about when that will be after his urology appointment on Feb 25th.

I finally got a few new photos up for you. Now that I know how I will be able to update more often. The video isn’t up yet, Maria will have to do that simply because of the size of the file. Enjoy the new photos. He is changing so much everyday that most of these new photos look old to me now…

Take care everyone.

Sunday, February 17, 2008

Oh, Yeah

I forgot to say, Nolan has finally had the tip of a tooth pop through those poor gums! He has been drooling/teething for 8 months! Hopefully the rest of the teeth will get the idea and follow soon and give dear Nolan a break from the pain.

Monday, February 25, 2008

Surgery Date set

We went to the Urologist today. They checked on Nolan’s growth and general health and approved him for surgery. They first offered us the date March 3rd: too soon, too soon we said! Actually, the main reason we wanted a later date was our trip to Alabama: Ronan needs to be able to concentrate on making work and with the recovery period being around ten days it was just too close to our departure date. (Though I wouldn’t know I can’t imagine it is any fun to travel with a catheterized toddler).

So March 31st is the official date, we won’t know the time until the Friday before. The surgery is only around 2.5 hours and as long as things go well he will come home that evening. The surgeon is hoping to accomplish everything with one surgery though the severity of his hypospadia might mean it will take two surgeries; The Dr. seemed confident he could get everything in one go but said he “didn’t promise anything”.

It is good to have a date set so there is an end in sight. However, I don’t look forward to it, except the part where they come find us in the waiting room and say everything went well and we get to take him home. Just being in the hospital triggers memories/emotions for me so I will be a bit of a mess on the 31st. Probably on the 30th too… Knowing you are out there thinking of him will once again be a source of comfort for all of us.

Monday, March 24, 2008

Gulf Coast Adventure

We took a trip to Alabama last week in part for a show Ronan was in and in part to see family. We drove to Montgomery the first night to visit with Aunt Noni and eat some of her always delicious food. Nolan got his first ride in a Radio Flyer wagon while we were there. The next day we drove down to Fairhope which is a lovely town right on the bay, lots of spanish moss, live oaks and southern hospitality.

Uncle Billy and Aunt Margaret (Kara’s mom’s sister) were kind enough to let us stay with them. Thankfully none of the boys (Margaret had five) and their families live too far away so we were able to catch up with everyone. Ronan got lots of help from the cousins, they came to set up, brought food, kept him company and helped him break down, which made things so much easier. (Thank you!). Nolan got to see lots of cousins, Aunts and Uncles, play with new and exciting toys and ride on a boat which he very much enjoyed. Kara got to do all of the above and also had a great time.

The only damper on the trip was that Nolan got a bad cough which started to turn into pneumonia. Happily, Uncle Billy is a Pediatrician and was able to diagnose early and prescribe antibiotics quickly. Both Ronan and I were pretty shaken by the experience, seeing him work so hard to breath was too familiar. However, Nolan was feeling better by the time we pulled into our driveway which his Pediatrician confirmed the next day. (Yes, we made record time home). He still has some gunk he is working up but his spirits are much better and his work of breathing seems normal.

Most of you know that next Monday is Nolan’s surgery, but in case you forgot please take a moment on Monday to cheer him on. It looks like we will have some extended family around for support too which will be a big help. We are hoping this will be the last time he has to be intubated in his life! In fact I hope that for all of you, may you never (again, if you have experienced it before) have to be intubated in your life. take care all, Kara, Ronan and Nolan

Thursday, March 27, 2008

New photos

There are some new photos, mostly from the Alabama trip…

Monday, March 31, 2008

surgery today!

Just a reminder for anyone checking the site on Monday morning, that Nolan’s surgery is today. We’ll get an update on the site as soon as we can after surgery, but in the meantime, please keep Nolan and Kara and Ronan in your thoughts and prayers.

love,
Maria

surgery update

Nolan is out of surgery and the report is that it went well. They were able to do everything they needed to. Kara and Ronan haven’t gotten to see Nolan yet, but he should be in the recovery room soon and they’ll get to see him then. Thanks for checking in!

-Maria

Tuesday, April 8, 2008

whew

As Maria posted Nolan’s surgery went well though it took about one and a half hours longer than expected. I was pacing the halls afraid something had gone amiss in spite of my Ativan…

I got to be with him in the PACU to help calm him down and see if he would drink anything (he took juice) which kids have to do before they will let them out. When the Nurse took me back I could hear him screaming his displeasure before we got around the corner. I sang to him and snuggled him in warm blankets and watched his breathing and heart rate slow down on the monitor. I think we were both equally happy to see each other. We took him home about three hours after they finished surgery.

The week + after the surgery has been harder than I thought. Nolan has been out of sorts from the drugs (codeine makes him manic apparently) and in pain from the incredibly long catheter he had. The Dr. thankfully took out the catheter on Monday (again, holy smoke that was long!) and he has been better but still not the same happy camper as before. His sleep habits are also out of whack so we are having to get up all through the night. A few nights were pretty much all nighters, the medication he was on to prevent bladder spasms made him restless so he couldn’t stay asleep. He is off of it now so we are hoping he will settle back into his normal habits soon. I have spoken to a number of folks who have assured me that this is normal, that it often takes two weeks for them to get over the experience. I am personally looking forward to the return of Nolan, it has been stressful having such a fussy, sleepless toddler; I guess I have been pretty spoiled personality wise.

Just in the past two days he has finally started eating again and making up for lost time. He wouldn’t eat or drink for the first few days, so much so that I used his Gtube to keep him from withering away. After the third day he started drinking again but was not interested in food until Monday. Now he is eating all day! We are hoping this is going to continue and his weight will start heading up towards the curve again. However, Nolan likes to keep you guessing so we aren’t counting on it.

The only other potential bummer is the Dr. saw a “gap” in his stitches that could be just skin level or it may go all the way to/thru the urethra which would be bad. I couldn’t bring myself to ask what exactly it would mean, I wasn’t ready to hear the word “surgery” again. We will find out more on Monday when we see the Dr again. I still won’t be ready to hear he needs surgery, can’t we just duct tape it?

Wednesday, April 9, 2008

more photos

In “toddle time” there are some photos from his first easter egg hunt at Mimi and Dindin’s; lots of families come over and spend the morning searching for treats amongst the trees. There are a few photos with his Aunt Fab who came down during his surgery to help out (Thanks Aunt Fab!), some of him playing with the wind chimes Mimi got him as a get well present and there are a couple of bath shots just to embarrass him later in life…

Wednesday, April 16, 2008

spring rules!

We went to the Urologist on Monday but don’t know much more than we did the week before. We go back in five months at which point all the swelling will be gone and he should be able to figure out the next step. Meanwhile we are supposed to keep an eye out for any urine coming out of the gap, if we see that it means he has a fistula and he will be having corrective surgery in the fall. The Dr said the fistula would be “easy” to fix but would still be a general anesthesia/intubation situation. And yes, another catheter… Ugh.

On the bright side of things it has been nice enough outside to spend most of the day in the yard (or the neighbors yard). Nolan loves to be outside so we are both loving the sun and warmth. Yesterday we took a push toy out on the street which he enjoyed. He fell to his knees several times but seemed to know just what to do and got right back up. After the third fall he complained a little but I think some of that was him getting tired from walking so far.

I look forward to introducing him to the park near our house. I have not been there but our neighbor says it is a good place for little ones and will satisfy his need to climb. It will be so nice to get him out of the house and for him to be around other children. He has been comparatively limited in his exposure to other children because of his health issues, but RSV season is over now and we are both ready to get out there! I hope to also introduce him to water this summer, by 2009 there will be an “aquatics center” at the park near our house so swimming (well, wading for now most likely) will be a good activity for us.

Happy Spring everyone!

Wednesday, May 14, 2008

May update

Well, our computer has died so we have been out of touch and once again I am thankful for this site since we have put so many of the photos on it and we may not be able to get back any of the ones on our computer. That is certainly an advantage film has over digital.

Nolan is well. A real handful and getting cuter every day. He will climb anything that sits still long enough and has progressed to walking while holding just one finger but still won’t try it on his own. I keep telling him he would be so much happier if he just went for it, though it would mean a whole new level of vigilance on our part. We are bracing ourselves for the immanent “purging” of our breakables Nolan is going to help us with; we have too much stuff but we love every piece of it so we still have all of it, so far…

Nolan is great at making animal sounds, this morning we were hooting like owls, barking like dogs and meowing like cats. He also sings with me when I sing to him (which is often) though he seems to know different words than I do, strange. He is a pro at the “Itsy Bitsy Spider” and also enjoys some Patty cakes. He talks up a storm, unfortunately I can’t understand most of what he is saying which is frustrating to both of us at times. Other times we just laugh and keep going.

We have started going to the park which has been great. He loves the slide but most of all is interested in the other children. He is a bit shy at first but once warmed up will hit them with his “check me out” scream which makes adults laugh but kind of stumps the kids (they always look to me for direction). When there aren’t many kids there we climb up the slides, swing, walk the low walls, play with the mulch (move it here, now move it there, now back again) and watch the very tame squirrels. It is nice just getting out of the house and finding a good place for him to use up some of his ample energy.

Nolan’s weight has not gone up since November (some gains some losses all equaling out to just under 18 pounds). I saw a Dr (not his regular Dr) on Tuesday who brought up his G-tube but I vetoed that idea quickly. We are back to trying an antihistamine that also acts as an appetite stimulant (in 50% of the children). I had briefly tried it before his surgery though I wasn’t convinced it worked. I took him off it while he was on all the post surgery drugs because he was out of his head from them and I was not about to add another drug onto the mix. I have heard two different ideas about the results of this antihistamine, his pt said it will work quickly and if we don’t see a difference in his appetite right away he is of the 50% it doesn’t work for, then on Tuesday the Dr led me to believe we just didn’t try giving it to him long enough, that it would take a while to kick in… so we are going to give it longer this time, I guess, unless we get another opinion from his regular Dr. I will fight returning to the g-tube tooth and nail because I believe it will just take away from his desire to eat orally, but if someone presents me with a convincing plan I will give it a try if it will help Nolan.

That’s the news for today. No more pictures until we get a computer of some sort back in service. Hope everyone is well.

Monday, June 23, 2008

hooray, boo, hooray, hope

Well, since the last post Nolan’s weight gain has been much better. We made it through the 18lb curse and have reached 19lb 2oz! I am not convinced it is due to the “hunger stimulant” he is on as his appetite still varies wildly. I think the plateau was due to his illnesses and surgery and he has finally gotten back on track from that. However, we are still giving him the meds for now, they don’t seem to be detrimental in any way and I could be wrong about their affect.

He still hasn’t found the confidence to walk on his own. He did take three quick steps between his Aunt Fab and I just this weekend so we know he can do it, he just has to believe in himself. We are trying to boost that confidence with exercises like getting him to take one or two steps between people or objects and by walking him all over creation and back while just holding onto his shirt. I am not too concerned with it really, I know he will get there one day and years from now it will only be a story about “he didn’t walk till he was two”. He had his developmental tests done recently and did very well aside from his gross motor skills issue. He came out right on target for his cognitive and way ahead on his fine motor skills. The doctors were happy and so were we.

Those are all “hooray”.

Today we had a “boo”. Nolan developed a fever that spiked high quickly last night. We gave him tylenol and it brought it down to a reasonable 101 for most of the night. Then early this morning it went shooting back up and before we could give him anything he went into a seizure. I was able to be calm for about 30 seconds of it and then freaked out because it seemed like he wasn’t able to breath. We called 911 and got the medics there pretty quick. By the time they came he was no longer seizing but was still chilling and very groggy. We ended up at the ER for awhile, they gave him Motrin which brought the fever back down quickly (it was 104 while we were there). They believe he had what I did about 10 days ago (a crud that is going around here) and that it was a febrile seizure and not anything to do with epilepsy. It has been a sleepy/fussy day but he is clearly feeling much better now, pretty much back to himself. We on the other hand are a bit wobbly.

the final “hooray” is that he is seemingly ok and up to his old tricks. There is a chance that he will be prone to these seizures. The stats are 30% of kids have them again and it may be that his complicated medical history makes him more likely to be in that 30%. And it may be that having these seizures means he will be more prone to epilepsy. But maybe not.

I, of course, really want his medical difficulties to be done, for him to have a hospital and mostly pain free childhood (ok, life is really what I want) because I feel like he has had his share. and we have too. We realize those are just wishes/hopes and that what will be will be and that we will do the best we can for him. But, oh do I hope.

Friday, June 27, 2008

boo update

Nolan is better than he was but he is continuing to get fevers which we are treating aggressively with motrin. Aggressively means as soon as he reaches 100 we give him something to bring it down; normally I wouldn’t be so fast to treat it but my psyche can’t handle another seizure so soon.

He seems like his normal self, good appetite, active, silly, loving but a touch more fussy than usual. The Doctors have done some blood tests and a urine sample to rule things out. Some of the tests are still pending but some of the blood cultures came back negative for bacterial infection so we may be dealing with some unknown viral infection. He is on antibiotics for a possible UTI. At this point I am hoping that it is a UTI so we have something we can treat rather than a mysterious fever source.

Some fun news. We have begun signing with Nolan. The main ones we use are “thirsty” and “all done”. I started with those because they are the only ones I knew at the time. We are starting to expand now that Aunt Fab (who is now officially an OT!) gave me a book of signs for kids. Since Nolan is on the low end of his speech development it has been a relief for everyone for him to be able to communicate. He is pretty quick to pick up the signs which is fun to watch. He will pull out the “all done” sign when he doesn’t want his diaper changed or more recently at the doctors office when the nurse came in the room.

Will post more when we figure out what is going on.

Saturday, June 28, 2008

UTI hooray

Who would have thought we would celebrate a UTI? It turns out Nolan did indeed have a UTI though the antibiotics he was on were not the right kind so we have started a new round. So far he hasn’t had another fever and I believe he is starting to feel better though it is a bit hard to tell right now because he is due for a nap but won’t go down.

We are happy to have something known that can be solved. Hooray!

Monday, July 14, 2008

big weekend

Nolan is all better from his UTI and seizure experience. He is back to his normal self just doing his toddler thing.

He had a fun weekend. His friend Eva (our neighbor who will be five in Oct.) came over to visit on Saturday morning and then we went to her house (at Nolan’s insistence) that afternoon. Eva has a younger brother, Joseph, who will be one in Sept. so Nolan got to “play” with him too. Then his cousins Coleman and Logan came over to spend the night which was icing on the cake! Nolan laughed more than I have ever seen, I think he wore himself out but couldn’t stop laughing.

On Sunday we went to church to hear Dindin give the sermon and to introduce Nolan to the people of the Church of Reconciliation since they were so helpful to all of us. Nolan lasted long enough to be introduced and then had to be taken outside by Ronan. Thankfully they have an awesome playground for the kids. Later that day we went to Julian, NC for a lunch/meeting with some potter friends. Nolan got to meet some new dogs and cats as well as meet some of the largest horses I have ever seen. He got to pet their noses and see them run along the fence. We walked all over the farm, played in a sand box and saw lots of cool art.

As you know Nolan has been reluctant to walk on his own, still is. However, on Sunday he was walking towards a door with me holding onto his shirt as usual. He was so intent on the door that I let go and he didn’t notice and walked all the rest of the way no problem. I’d say he went about 7 to 10 steps. So we know he can do it now, we just have to keep pushing him. I think it won’t be long at all now as I have seen his confidence grow rapidly in the last couple of weeks.

We are working with Nolan on being gentle or at least not hitting others, so far he is totally ignoring us. Our poor dogs have been the target of random slaps (the cats are too wary) not to mention me, Ronan, Eva, Joseph, Mom, Dad, Mimi, Maymay, Deb… you get the picture. Actually, there was a breakthrough moment just last night as I was putting him to bed. He looked up at me, I smiled and he raised his hand to whack my nose, I said “no, don’t” and he lowered his hand and put it behind his head. So there is hope but most of the time it seems like he hasn’t heard us. Typical toddler stuff!

He now weighs 19lb 7oz and got a good report from his endocrinologist recently so we are flying high for the moment. More hoorays!

Monday, August 4, 2008

weight & wait

Weight: 20 lbs 1.5oz! He is getting heavy to carry around for long.

Wait: We have pictures and tales to add to the site (beach trips for instance) but you will have to wait for now. Suffice it to say things are continuing to go well.

Again, many thanks to all of you out there. Stay cool and drink plenty of water!

Monday, August 18, 2008

beach photos

There are some photos from Nolan’s two (yes, two) trips to the beach on the site now.

These were momentous trips because while he was in the hospital we would imagine a day when we could go to Bald Head as a family and that being there would mean we had finally made it through.

We had the opportunity to go with David, Leon, Coleman and Logan for a few days which was great fun especially for Nolan who loves playing with his cousins. Then Kara and Nolan were able to return for a whole week (Ronan had to stay home to teach) with Mimi, Dindin, Aunt Margaret, Aunt Noni, Maria and Deb. It was nice to be there so long and to get to visit with the folks from Alabama. We also had a nice surprise visit from some friends who are living in Oregon. They brought their two sons who were great playmates/objects of interest for Nolan.

One of Nolan’s favorite things to do was to ride around in the golf carts, he thinks it is much better than a regular old car. He also liked playing in the tide pools, scooping sand and trying to feed the seagulls; he didn’t like the waves except for in very brave moments.

All in all both trips were welcome experiences and we can’t wait to return.

Sunday, September 14, 2008

Birthday Boy!

Nolan is officially two…um, well, 21 month AND 24 months! Two years out of the womb!

We had a party on Saturday. Many friends came by to help celebrate, blow bubbles, eat cake, open gifts and play music. It was a fun day, we are still recovering. Nolan was so worn out he slept till 8 am (!!!) and probably would have kept going but we didn’t want to get too far off schedule. There are pictures of the party in the “Adventures in Toddlerville” album.

This morning, his actual birthday, we went to Breadman’s with Mawmaw and Pawpaw. He is in the livingroom playing with all his new toys, making music, and reading books. He thinks the weekend was pretty awesome and that we should do it again soon.

Thanks to everyone who was able to come to the party, to all who sent birthday wishes and to all who are reading this now. We are all so blessed to have you as part of our community.

Wednesday, October 1, 2008

nice surprise

Nolan has had several infections which were thought to be UTIs though the last sample they took was “contaminated” so it wasn’t clear what was going on. Because UTIs are so rare in boys his Pediatrician wanted to have some tests done to see if he was having reflux. There are cases where the urine refluxes all the way back up to the kidneys and can damage them which can require surgery.

The first test was a simple ultrasound which went fairly smoothly. The next test was a series of x-rays plus a test where they catheterized him and filled his bladder to see the path of the urine. This test was traumatic for everyone. Two nurses tried to cath him which had him wailing and us ready to walk out. They were able to call his Urologist (Dr Bukowski) down who talked to us about why he thought the test was necessary and then was able to put the catheter in in a matter of seconds. After that things were better and the test was over fairly quickly.

It looks like he is having a very small amount of reflux which Dr Bukowski said is nothing to be concerned about. He also said there are no strictures from the surgery and he didn’t see any signs of a fistula which is a common occurrence after surgery to fix severe cases of hypospadias. This was a nice surprise as we have been expecting Nolan to need surgery this fall ever since his last surgery. The Dr said a fistula can occur at any point so it doesn’t mean Nolan is fully off the hook but it makes this fall and winter a much more pleasant time.

His pediatrician seemed more concerned with the small reflux because of Nolan’s UTI history so we had another conversation with Dr Bukowski. He had another look at Nolan’s x-rays and was clearly unconcerned about the amount of reflux, he said it was within normal range. He also said that the tests we had used to diagnose Nolan’s UTIs were not reliable, that maybe one in 10,000 were uncontaminated so that, yes, he had some kind of infection but the source was unknown. There are two ways to test for a UTI, we have been “baging” him where you put a bag over all the necessary parts and capture the urine to test it. The other choice is to use a catheter which is apparently the only way to get a clean sample but is hard to do, painful and traumatic for all of us. So. Next time…? let us hope there is no next time.

In any case we are looking at a fall with no known surgery, cooling temperatures and maybe if we are lucky a bit of snow. Sounds great!

Thursday, October 23, 2008

just walk on by

We finally have a toddlin’ toddler. Nolan was proclaimed a walker by his PT yesterday so he has graduated to seeing her only once a month now (wait, is that a reward or punishment?!). He has been walking for about two weeks now and is starting to bring his hands down from “high guard” to by his sides; It looks a bit funny because he doesn’t have the natural swing to his arms yet, they stay right next to his body. He already does really well outside on uneven ground and can step over roots and such with relative ease. I believe the next project is steps, thankfully we don’t have any here and will have to make a special trip to Mimi and Dindin’s to practice.

We will be watching his speech development over the next month and decide if he needs speech therapy when his PT and case manager return in November. According to them often kids can concentrate on only one new skill at a time so now that he can walk he may forge ahead on speaking. If not, we have long time family friend who is a speech therapist who I think Nolan will love. We are still not worried about him talking and believe it will come in Nolan time but don’t mind having him go to therapy either. Really, of all the things we have had to worry about this seems minor.

I will put up some photos from our recent trip to the mountains. Nolan went to the Carl Sandburg park where he met, fed and ate with some goats (mmmm, hay!) We all had a good time seeing the family and hope to see them again soon.

Monday, January 5, 2009

Happy New Year

Wow, has it really been over two months since the last post?! Well, time flies when your chasing a two year old.

We are well here. Nolan is now an old pro at the whole walking thing. He still trips regularly but can practically run and is showing us some fresh dance moves- look out Beyonce!

He has finished his physical therapy though she is calling once a month to make sure things are still progressing. We miss seeing Randah not to mention the motivation she provided for cleaning the house… We are going to start speech therapy soon. On the last test Nolan was still on the low end of normal which just qualified him for speech therapy. We decided to go ahead and sign him up; we still don’t feel worried about him talking but figure it certainly couldn’t hurt. He definitely knows-and uses-the word “NO!” Hopefully we will make another friend in his speech therapist as we did with Randah.

We had a big holiday. We were here for Christmas day then drove to Poplar to have another Christmas with our mountain family. With all the parties, presents, cousins and traveling we were (um, still are a bit) worn out. Nolan was a champ and held up quite well for all of it. We gave ourselves a camcorder as a gift and hope to get some footage on the blog. Right now we are having trouble getting our computer to read the disks so it may be a while before you (sorry Squarepants!) get to see Nolan in all his glory.

Happy 2009 to all. We feel it is going to be a good year and look forward to all the adventures ahead. Just in case I let time zip by again I will go ahead and post a celebration: On February 11th Nolan will have been home for two years, good work little man!

more photos

ok, finally got more photos in the gallery. Enjoy!

Wednesday, January 21, 2009

snow days

Nolan spent some time playing in the first snow of his life (the minor flurries we have had here in the past two years do not count!). His first trip out in the morning went well for about two minutes then he fell twice and had a melt down. Turned out all he needed was a nap (about three hours of nap) and after that he was good to go. He loved watching Neaka and Sambuka playing in the snow most of all though he thought stomping in it was pretty fun too. It was nice for all of us to get to see the snow again after so many years of false alarms. We hope to show him the joys of sledding in the future! We got a few pictures we will eventually post but we are once again without internet so it may be a while.

P.S. At his last weight check Nolan was twenty-five lbs (they now weigh him with clothes on).

Tuesday, March 3, 2009

Nolan’s first day at preschool

Nolan has started going to preschool two days a week. It is a great school with mixed population of average kids, physically challenged and developmentally delayed kids; all the kids play and learn together without any separating or lowered expectations for any of the children. There are at least three teachers in the class with 12 kids. He has been twice and seems to have just fit right in like he has been patiently waiting for Mom and Dad to become ready to send him. There are some pictures from his first day in the photo gallery (hopefully I will be able to post them). I am sure there will be stories to tell as he spends more time there…

Thursday, March 5, 2009

Mic-key B-gone

Yesterday Nolan was playing with some children who live in Mimi and Dindin’s neighborhood. At one point one of the girls, Emily, picked something off the floor and asked me “what’s this?”. I about dropped the computer when I realized it was his mic-e button, the balloon had burst and it had simply fallen out. The openings can close quite quickly, sometimes as fast as 30 minutes so I attempted to get that button in just to keep the hole open enough to put a replacement button in but I couldn’t get it to go. After some calls to his Pediatrician we decided to drive home and try to get a new button in there (if we had one, we weren’t sure). At home we did find a new one as well as some lidocane and lubricant to make it easier for everyone but we still weren’t able to get it to go in.

The next step would be either to go to the hospital ER and have them attempt to stretch the hole little by little until the button went in OR take the hint and just leave it out. Since we hadn’t used it for feeding since Nov. 2007 and we really didn’t want to spend the evening in the ER (for all our sakes) we decided to leave it out. This is something we had been wanting for a long time but we still felt (feel) a but panicky about that safety valve being gone, there is a long list of “what if’s” one can get trapped by. But it is also exciting, we have never known Nolan with a object free belly and now it is clear for full on zerberts and rubbing. It is bizarre to have nothing sticking out of his belly, kind of like the first time he was tube free in the hospital, it was strange to be able to just pick him up without having to rearrange and be careful.

And so the next adventure begins!

Monday, March 16, 2009

what about the hole?

Yeah, so there is a hole left once the mic-key button is gone. These close up pretty quickly when the button has been in for less than six months… Nolan had his in for two years so things aren’t closing up quite so quickly, though it is “closed” enough to make it impossible to replace the button without surgical intervention. We have had some leakage issues, the fluid coming out bothers his skin around the ostomy and seems to make the ostomy itself somewhat raw. (sorry if you were eating while reading this…). So we put bandages over the site and put various ointments on his skin to both protect it and to help it heal. He has had a cough for the past week which seems to have made the leaking worse as he bears down to cough but the site is looking better now as we have been more on top of taking care of it. Apparently the doctors give such a long term hole about 4 to 6 weeks to heal before they begin talking about intervention.

After doing some research and talking to my handy Dr. neighbor it seems there is a chance (say around 40%) that he will have to have surgery to get the hole to close. I have heard everything from simply stitching it closed to the doctors needing to scrape down to the next epithelial layer so the skin will connect. I haven’t asked what the surgeries would entail in terms of anesthesia because I am not ready to know. Meanwhile we will just assume his body will do its work in Nolan time and I am going to put my new found knowledge of Qigong to use to help things along. Remember, closure is a good thing.

Saturday, May 30, 2009

quick bits

Nolan’s mic-e button site still hasn’t closed on its own. We spoke to a Doctor last week who said after six months of waiting it would probably need manual intervention (surgery). We have a little bit more time to give it a chance so we are choosing to do that. It seems like the worst part of it is the bandages, they bother his skin more than anything to do with the site. Otherwise it isn’t much of an issue though it seems to leak a lot when he goes to school, I just make sure to put extra protection over it and send an extra shirt.

We just made it through Nolan’s first stomach flu. He has never been one to throw up so it was a shocker when he covered the couch on Wednesday. He also got the bed, the rug and the couch again. He has started eating solids again and while he has a fever still he seems much more like himself. Poor little Bean. Mom and Dad are greatly relieved to see him up and about even if it means his terrible twos are returning.

Yup, Nolan is readily displaying the terrible twos. This magically stops on their third birthday, right? It’s terrific threes, right? Ahem. I haven’t had him drop to the floor and refuse to move while screaming at the top of his lungs in the middle of the grocery store yet but he’s testing his boundaries every chance he gets. We try to remind ourselves that this strong will is what helped him through all his early ordeals and why we have the blessing of being his parents today. Hard to hold onto that in some moments but we try.

Saturday, June 6, 2009

Purple please

Today we went out to our friends house to meet up and ride together to a pottery sale. Nolan wanted to play their bells naturally which Ronan took him to do for a few minutes before we left. On the way down the steps to leave Ronan slipped and fell landing on his tailbone and middle back and also Nolan’s right leg. At first Nolan seemed okay if really scared by the fall but after 20 minutes he still wouldn’t put any weight on his leg. We decided to skip the trip and booked it to the Pediatricians office (walk-in hours on Sat. are till 11:30, we left the house at 10:50) where they sent us to the ambulatory care center (which closes at Noon on Sat). There they x-rayed his leg and found he had fractured his tibia, a common fracture for kids his age. His break was clean and should heal with no problems in the future.

He was amazing through the whole process only crying a bit when they turned him on his side for the x-ray and when the cast was first put on because apparently it gets quite warm which startled him rather than hurt.

Nolan now has a purple cast all the way up to mid-thigh which will remain on for at least three weeks. He isn’t supposed to put weight on it for this first week which was easy enough today but as the pain fades (not to mention the cabin fever setting in) I think will be a challenge to say the least. Right now he is sleeping comfortably thanks to a dose of Motrin and an exhausting day. Hopefully tomorrow will be day one of a quick recovery.

We aren’t sure how Ronan is going to feel tomorrow. He has been in pain today, has an ugly bruise on his back and a bruised tailbone, but has been moving around rather well. He has a studio sale coming up this weekend so we are hoping he will not stiffen up too much tonight. No rest for the weary!

Sunday, June 14, 2009

closure (or enough please)

Well, it seems that when Ronan and Nolan fell last week that Nolan’s g-tube site was pulled in a way that reopened the hole a bit. Quite a bit. It has been leaking enough for us to put a call in to the surgeons who told us it is time to get the thing closed once and for all. SO. Nolan has surgery scheduled for the 22nd (date may change but that’s what we believe now) to have them stitch up the hole. It is a simple enough surgery in many ways but will require him to be under general anesthesia. We should be able to take him home that day and I don’t believe there will be much post operative work to be done other than pain management.

It will be good to have this part of his NICU past finished, to not have to worry about leakage or wonder if it’s ok for him to swim. Having said that I will admit to feeling trepidation about the surgery though I am trying to focus on the positive so I don’t send my fear into the operating room with him.

He seems to finally be feeling better from his broken leg. Yesterday he walked around on it for the first time; he held my and Maymay’s hand, later graduating to only one hand. After several trips up and down Mimi and Dindin’s driveway I think the leg became tired or a little sore; he kept wanting to get down and walk but once on the ground wanted up again after trying a few steps. I am sure we will practice more today and hopefully build up his tolerance. We are all looking forward to him being able to move around on his own, he is a heavy little guy no matter what the scales say.

We will keep you posted on the official date for the surgery so you can send positive thoughts his way.

Wednesday, June 17, 2009

Tuesday the 23rd

Nolan’s surgery is scheduled for the 23rd, most likely in the early a.m. The word is that it should take about half and hour and we should be able to go home before lunch (if he really is one of the first cases of the day). So, if you are up early on that day take a moment to send healing thoughts his way. We all hope this will be one of the last surgeries for a long while if not for the rest of his childhood. The rest of his life? We can always hope.

I will post post-surgery once we are settled back at home to let you know how things went. Thanks for your continued support!

Tuesday, June 23, 2009

At home, ahhh.

The surgery went well according to the Doctor. If all heals well he will be ready for scuba diving in two weeks! Or at least a dunk in a pool… He was quite out of sorts when I went to be with him in the PACU but calmed down once we got to snuggle. He is wiped out and still seems to not feel too well but took a little milk and then fell asleep so we are hoping some good rest will help him start to feel like himself again. According to the doctors he should be pretty much over the pain and ready to rumble by Thursday as long as things heal up nicely. Meanwhile we have to keep him as still as possible for a toddler for the next twenty-four hours and watch the site for signs of infection.

Mom and Dad are wiped out by the early morning rise and anxious wait but so happy to have the little man home. We are looking forward to next week when not only will he be over this hump but should become cast free! I will post later this week after I have had some sleep and can give an update on his healing– and perhaps be a little more coherent than I am now.

Thanks for all the well wishes, we really appreciate it.

Nolan these days…

Here’s a very short video of Nolan walking around in his cast. I’ve got another one I’ll add if I can get the upload to work, so check back.

Friday, June 26, 2009

green

We went to the Orthopedic clinic yesterday to check on Nolan’s leg with the hope of getting his cast off. They did remove it to x-ray his bone and see how the healing was going; The x-ray showed it had healed “about 6/8ths of the way”. When that is the case they let the child decide by giving them a chance to walk around on it and see how it feels. Nolan would collapse his leg every time he put weight on it and was obviously uncomfortable with it. So we put another cast on, this time green for a change. He will get it off right before we head to the mountains for our family reunion so he will be learning to walk while we are there. I think he will have lots of motivation as he tries to keep up with his older cousins which I am thankful for as he has gotten used to being carried around.

He has totally recovered from the operation. In fact he had seemingly forgotten about it by the next morning and was raring to go at 5 a.m. Wednesday morning. It is so nice to have it behind us and we look forward to seeing the little scar that will be the opening line to yet another story. We will go back to the surgeon before we leave for the reunion to so a follow up but things seem to be healing really well so I think it will be a quick visit.

Thursday, July 9, 2009

castaway

Nolan had his cast removed this morning. It was a traumatic event requiring both Ronan and I to hold him so the guy could cut it off. I know people all up and down the halls could hear his screams, not the most comforting sound when in a hospital setting. It is so nice to look at him and see just his sweet little body, two shoes and all.

He has tried a little bit of walking today though it is supposed to take him a while to feel comfortable with his naked leg and to build up strength again. He will have lots of motivation one he sees his cousins on Saturday. We are also hoping to introduce him to the swimming hole while we are there now that he has no cast and is healed from surgery. We are all looking forward to being in the mountains together, healed, happy.

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