Updates on Nolan

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. 

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

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.

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. 

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. 

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

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.   

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. 

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. 

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.