Updates on Nolan

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. 

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.

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.

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.

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.

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.

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

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.

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.

pictures from Nov 9th…

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

————–