One Month Old and Eating Like a Champ

Thank you NICU nurse, Gus, for Kieran's milestone signage!

"There is no one giant step that does it.  It's a lot of little steps."
Peter A. Cohen

Tuesday, December 5th - Days in the NICU: 34

What a week! Our little guy continues to be a total rockstar and we are all so pleased with his progress!  As of last week, Kieran had started continuous feeds of breast milk via his NG tube (nasogastric intubation - a tube up his nose that feeds into his stomach) and was on a CPAP for respiratory support.  The goals were to 1) maintain feedings of 22 mL per hour in order to take the next steps towards oral feeds so he could 2) stop receiving nutrition using TPN via an IV and they could 3) remove the PICC line and, if his breathing was steady through it all, to 4) move off the CPAP to high-flow therapy.  Our little nugget... DID.  IT.  ALL.

As of Wednesday, Kieran's breathing was still very comfortable, so Dr. Matoba decided it was time to downgrade his support and move from CPAP to high-flow therapy.  While CPAP helped keep pressure in Kieran's lungs during the exhale, the high-flow pressurized the air going into his lungs.  This was a very smooth transition and he did great.  The best part about moving off of CPAP was that the bulky ventilator moved out of room 1410!  One goal down.

Because Kieran gained some weight, his magic number went from 22 mL to 25 mL, but regardless, he was successfully able to tolerate this level of feed, so his TPN was stopped and two days later, they took out the PICC line!! Three more goals - done.

The PICC line was stitched into Kieran's thigh and I didn't realize until after they removed it that the tubing that was actually inside his vein was quite long... like 6" long.  After my stomach stopped flipping, I exhaled a major sigh of relief and quietly celebrated what this meant- significantly reduced chance of infection, increased breast milk, one less cord/tube/machine and... PANTS!  Up until then, Kieran hadn't been able to wear pants because of the IV.

PANTS!

We were so excited to get his cute chicken legs into some pantaloons, but then realized that they are kind of a pain when you are changing yucky diapers every couple of hours.  We've moved back to onesies and swaddles (#lazy).  NICU fashion isn't really following current baby trends, so we will save the pants for when we get home.

The other bonus of no PICC line is that we could finally give Kieran a bath with soap and water! We had been giving daily wipe downs with warmed, premoistened cloths, but nothing beats a good suds and scrub... especially when you have never had one in your whole life!  Kieran had a pretty bad case of cradle cap, so our awesome nurse (and teacher), Sandra, suggested we give him a spa treatment with a warm, wet cloth to soften it all up.  I couldn't blame him that he fell asleep while we were slowly scrubbing his head with a little brush to get all that gunk up.  He tolerated the rest of the hospital bath very well and after all his neck folds were clean and he got a good lotion, he was ready for a long sleep.

Operation Cradle Cap

Tag team hospital bath

Post bath - fuzzy hair and pooped out

By Sunday, we were in a holding pattern with the continuous feeds.  One thing I've noticed during my time in the NICU is that not much happens on weekends as far as aggressive steps in patient care.  This makes sense because the attending physician in the unit on the weekends is not the same doctor as the one on rotation during the week; the attending physicians during the work week rotate every few weeks so you get some consistency - the weekend doctors want to maintain status quo for the weekday doctors.  That being said, we could tell that Kieran was hungry through normal queues (fists in the mouth, rooting... etc) and we didn't want to wait another day to push our agenda for increased feedings.  So, we asked Dr. Henner, who we were familiar with, if we could start bolus feeds.  A bolus is a larger volume/dosage that is delivered more quickly, whether it is food or medicine.  The ultimate goal was to acclimate Kieran's tummy to receive more food and faster so he could start feeding orally.  Dr Henner agreed that Kieran was tolerating the continuous 25 mL feeds, so we could try 50 mL over 45 minutes every 2 hours.  Kieran did really well and even showed signs that he wanted more, so the nursing staff shortened the duration of the feed from 45 to 30 minutes so he would feel fuller faster.   During these transitions, Brian and I were letting Kieran experiment with "oral care", meaning we would dip his pacifier in breast milk or give him a drop in his mouth to get used to the taste.  The kid was like a baby bird - mouth open ready for his next fix.  We so desperately wanted to feed him as much as he wanted, but kids with CDH need to transition very slowly during this process to normal feedings, so we tried to be patient. 

On Monday morning we met our new attending, Dr. Robinson.  He felt comfortable trying out some PO feedings; PO stands for "per os" which is Latin for "by mouth".  Brian gave him his first bottle with only a tiny 10 mL and Kieran sucked it down like it was going out of style!  We continued the 50 mL feeds via NG tube and integrated the 10 mL bottles every two hours.  We even stretched our legs with breastfeeding by working on latching.  Thank you thank you thank you to my lactation guru, Jen, for helping with this process.  You are my hero.  On the breathing front, we also dropped the high-flow pressure from 3 to 2!  Wins all all around!

Kieran 💗 eating

As they would say in the Showcase Showdown - and that's not all!  Today, Kieran was able to take as much from a bottle as he wanted and the remaining ounces were given via NG - he did great, taking about 40 mL at his first two feeds.  The total quantity and frequency also changed to 75 mL every three hours - this equates to a normal feeding pattern for a one month old baby of his size.  We are hopeful to move from bottle to breastfeeding tomorrow - fingers crossed!  The team also moved his high-flow down to 1!

Our new set of goals are to 1) breath on room air without assistance and 2) get up to full feeds via mouth.  It is possible that we could be sent home with an NG tube, but I'm confident in Kieran's gumption to keep eating like a champ.

One month ago, Kieran was undergoing major surgery at 5 days old and the month before that we had just learned that our baby was going to be faced with incredible challenges upon birth.  Looking back, it is incredible to reflect on how much we have accomplished as a family and the immense burdens this little infant has overcome while making it all look easy.  I will admit that I still have a twang of jealousy as I see the new dads carrying their empty car seats into Prentice ready to take their brand new baby home, but I'm also starting to see the light at the end of the tunnel; someday very soon, we will be carrying that car seat into Lurie and joyfully taking our little leprechaun home.

In other news, Brian is now out of the walking boot and doing physical therapy at home (and in Kieran's room); he hopes to be running again soon!  Unfortunately, because of this stress fracture in his foot, Brian needed to defer his 2017 Chicago marathon entry.  However, I'm so very proud to write that Brian plans to run the 2018 marathon as a part of the Lurie Children's Marathon Team to honor Kieran!  His goal is to raise $1,000 specifically for the NICU to help families like ours during their journeys.  Check out Brian's fundraising page here:

http://foundation.luriechildrens.org/site/TR/Events/TeamRaiser?fr_id=1771&pg=personal&px=1936812 

A special thanks to our wonderful Lurie staff!  Dr. Matoba, Dr. Collins, Dr. Henner, Dr. Porta, Dr. Shaaban, Dr. Robinson, Dr. Wu, Jen, Sandra, Mary Kate, Laurel, Kerri, Cyndi, Gus, Julie and Cailyn.  And thank you to Juliana and Julien Lamblin and the Varble Family for feeding us this week!  You all are too generous and we are so appreciative!  

Monkey on monkey on monkey

"Be humble.  Be hungry.  And always be the hardest worker in the room."
Dwayne Johnson