Sunday, November 19, 2017

Big Steps Toward the Waiting Place

Thank you NICU nurses Nicole and Cyndi for this cute sign - look at his little footprint in the guitar!
"You are right where you are meant to be.  Everything is unfolding exactly as it should .  Your job is to breathe, be kind to yourself and quietly do what needs to be done."

Sunday, November 19th - Days in the NICU: 18

I apologize for the delayed post.  Time in the NICU is a funny thing. When Brian and I first learned that our baby would be spending his/her first few months of life in the hospital, I anticipated the days to move at a sloth's pace.  I researched new hobbies, like knitting, and expected to be able to accomplished all sorts of things as I made the 14th floor of Lurie's my second home.  However, I have been shocked at how quickly the days fly by.  So while I had every intention of writing this post on Tuesday (and then every day after that), today is the first day that I feel comfortable making time to write and update... because there really isn't any down time.

So, what has happened since Monday?  A LOT.  The day after his bronchoscopy, Kieran's x-ray was only very slightly improved, but his breath sounds on the right side remained good.  While I had hoped to come in and have the x-ray be pristine (Brian knew better), it wasn't the case.  However, because Kieran didn't require any additional oxygen beyond room air, his breath sounds were good and all other vitals were stable, the neonatology team felt confident that it was approaching time to take a leap of faith and extubate (aka take his breathing tube out).  Ideally, Kieran's x-ray would have mirrored all his other vital signs prior to taking this step, but after talking to our team, they acknowledged that sometimes not all the pieces will be perfectly aligned before it makes sense to take the next step towards recovery and challenge Kieran to use that right lung more effectively.  We were told that extubation would likely happen on Thursday or Friday, as long as everything remained stable.

On Wednesday, Kieran was about the same, but the neonatology team confirmed they planned to extubate the following day AND he could start getting small amounts of breast milk via a feeding tube asap - insert overwhelming excitement and anxiety here!! This was HUGE news.  These developments addressed the two major roadblocks kids with diaphragmatic hernias encounter - eating and breathing.  Because the repair of a DH typically requires pushing organs into the gut that didn't grow there, shifting the stomach, intestines... etc, the repair can cause digestive complications and reflux.  The plan was to introduce very small amounts of breast milk, starting with 1 mL per hour, and then increase as Kieran tolerated it.  The other consideration with eating is that we need to make sure that Kieran is receiving enough calories from my milk before the IV can be stopped.  Because kids with a DH tend to work harder to breathe, they burn more calories.  So, it is going to be a balance of 1) what he can tolerate and 2) ensuring he is getting enough energy to support his functionality and growth - this will all happen very slowly.

As for breathing, the team wanted to address his fluid retention before the extubation - he was still fairly puffy from all of the fluids he had received during surgery and the immediate recovery period.  Besides the fact that he just looked uncomfortable (he was so swollen that his feet looked like mine did at the end of my pregnancy and he was practically unable to open his cute little eyes), retaining extra fluid can impact your ability to breathe because your lungs don't have the extra room to open.  Thus, Dr Matoba and our nurse practitioners decided to give Kieran a diuretic to get rid of the extra fluid; diuretics make you pee and as we soon found out, the diuretic they used worked very well on Kieran.

Mohawk like dad
By Thursday, he had lost a significant amount of water weight and deflated like Violet Beauregarde post Juicing Room.  In fact, it worked so well that the team wanted to give him one more day to shed some extra fluid.  We could tell when we arrived on Thursday morning that our team was very aware that we would be disappointed with the extra day of delay, but that it was for his own good.  Everyone wanted to set him up for the best possible chance of avoiding reintubation as possible, so of course, we were on board.

Friday morning arrived and I was nauseous with worry.  While I wish for nothing more than Kieran to come home healthy, my next biggest wish was to get that breathing tube out.  I was so tired of being afraid to hold my son and watching him struggle as he gagged.  I wanted to see his little lips and hear his voice - watching my child cry but hearing no sound  made me feel like my guts were being ripped out of me and there was virtually no way for me to console him or make him feel better. Not to mention, no one wants their kid to be doped up on pain medications and sedatives - I didn't spend my entire pregnancy eating clean and organic as much as I could only to have him subjected to these drugs.  I yearned to meet my child and discover his personality more than anything.  But as with everything else in this journey, we needed to prepare for the whole spectrum of possibilities.  Even if they did take the breathing tube out, there were no guarantees that he would be able to tolerate breathing on his own.  And even if he could tolerate it initially, that didn't mean he would for sure be able to sustain it.  All we could do was hope for the best.

Our wonderful, no-nonsense nurse, Sandra, gave Kieran a little pep talk and Brian played the Rocky theme song for him.  It was go time.  The team told us we could stay, but I didn't want to be present if things didn't go well after they removed the tube.  Once again, we retreated to the lactation room.  About fifteen minutes later, Sandra came to get us and confirmed that everything had gone well.

We cautiously walked back into his room and we were greeted with tiny little kitten squeaks.  The breathing tube had obviously wreaked some havoc on Kieran's vocal chords, but I cried happy tears as his tiny voice was the most beautiful music to my ears.

We happily traded in the breathing tube for a CPAP that fits up his nose.  The CPAP doesn't breathe for Kieran like the breathing tube did, but it is still hooked up the ventilator and assists him with breathing.  He will likely be on the CPAP for awhile as his lungs (especially the right lung) get stronger.  Now that we know our son isn't uncomfortable, it is so much easier to be patient with this process. 
Snuggles with dad

Well, hello there!
Sleeping on mom

"Hmmm... very interesting"
Since Friday, we've learned that Kieran really likes the Mamaroo (a fancy dancy swing like contraption) and we even got some skin-to-skin time today.  He definitely has a quick Irish temper, but as soon as we resolve whatever is bothering him, he is quick to calm.  His big cries (which are getting stronger by the day as his voice comes back) is a good thing to help open up his lung, so we don't mind a couple of good squaks throughout the day.  He's been upgraded to a full sized crib, so Brian and I went crazy at JoAnn Fabric to outfit his mattress with adorable flannel prints.  While we are less than thrilled about our extended stay at "Hotel Lurie", we are doing our best to make it feel like home for Kieran. 

While his right lung has slightly digressed since taking out the breathing tube, his vitals a still good and we've been told that this is going to be a very slow process - it can sometimes just take time for him to catch up.  Dr. Shaaban stopped in yesterday and today - his breath sounds are better today than they were yesterday.  However, if they don't significantly improve within the next couple of days, he may want to proceed with a more invasive bronchoscopy to inspect what is really going on in that right lung.  But, for now, he wants us to just focus on the present and we will evaluate as each day comes.  The neonatologist, Dr. Collins, said he was very pleased with Kieran's progress thus far.  So now, we are in what Dr. Seuss describes in Oh! The Places You'll Go... The Waiting Place.  Kieran receives regular visits from respiratory therapy and we are working to keep him moving around to help get whatever junk may be lurking in that lung up and out.  We ask for your continued prayers for KPB and his little right lung.

Thank you again to our amazing NICU team: Drs. Porta, Matoba and Collins, our incredible nurses and NPs: Jen, Sandra, Mary Kate, Laurel, Nicole, Cyndi, Anna, Becca, Chris, Kasey and Diane!  You all are appreciated beyond measure and we are so grateful for your constant care of our little fighter.

Thank you to Fr. J for our coffee talk catch-up and your constant prayer and guidance during this challenging time.  Thank you to the Chenery and Cantrell families for our delicious meals this week; they warmed our bellies and our souls.  xoxo

"The longer you have to wait for something, the more you will appreciate it when it finally arrives.  The harder you have to fight for something, the more priceless it will become once you achieve it.  And the more pain you have to endure on your journey, the sweeter the arrival at your destination.  All good things are worth waiting for and worth fighting for."
Susan Gale