Tuesday, November 28, 2017

We Are So Very Thankful

Melts.  My.  Heart.
 "What I want is what I've not got, and what I need is all around me."
Dave Matthews

Tuesday, November 28th - Days in the NICU: 27

Happy (belated) Thanksgiving!  Brian and I have so much to be thankful for this year.  Not only do we have a beautiful son, but he is a tiny, bad ass, fighter of a kid.  Over the past week, Kieran has continued to make great progress with his feedings/nutrition and breathing.  Not to mention, Brian and I feel so fortunate to have spent close to a month together getting to know his little personality.

As of last week, the surgical and neonatology teams agreed that we could start introducing breast milk via a feeding tube, but it needed to be a very slow process to ensure Kieran's tiny, sensitive digestive tract could handle it.  After a couple of days, Kieran was doing so well that the team gave the green light to increase the increment bumps from 1 mL per day to 1 mL every 12 hours; as of last night, Kieran was receiving 18 mL per hour round the clock.  This is huge for a couple of reasons.  First, the more nutrition he receives from milk, the less intravenous nutrition - TPN and lipids - he needs.  TPN (Total Parenteral Nutrition) is a solution that contains protein, carbohydrates (in the form of glucose), fat, vitamins, and minerals and the lipid emulsion is fats.  These two liquids have done a great job of helping our little guy grow, heal and gain weight up until now, but the goal has always been to get him off them and on to breast milk asap.  As of two nights ago, he no longer needed the lipids and we are hopeful that by mid week (when he is receiving 22 mL per hour), we can get rid of the TPN, too.  Second, as soon as we reach the magic number of 22 mL per hour, we can start simulating 'full feeds'.  We don't eat continuously (even though sometimes I feel like I do), but rather we consume our meals in short bursts.  Kieran needs to be able to tolerate this kind of feeding before we can consider oral feedings and removing the tube.

If Kieran is able to get up to 22 mL per hour and they take him off the TPN completely, there is a chance that we could remove the PICC line later this week.  This is also HUGE, but these are big conditional statements.  The PICC line currently makes it very easy for the team to administer medicine if Kieran needs it (which he hasn't in some time), so we don't want to remove it until we are sure he doesn't need it any more.  The NICU constantly reevaluates the need for central lines like Kieran's because there is always a risk for infection.

As far as his breathing is concerned, he has been tolerating the CPAP well.  The cannula is an annoyance, but nothing compared to the breathing tube.  Currently, his vent settings are pressurized.  The doctors reduced the pressure on Sunday incrementally and he did great!  The plan is to reduce it again today.  If he does well again, the hope is that he could come off the CPAP and move to high-flow therapy.  This would involve another cannula, but it is less supportive than the CPAP.  All of these steps are trying to wean Kieran off hospital supported methods and adjust him to using his own body and so far he has been showing off!  His left lung is still doing most of the work; the x-rays of his right lung continue to show little improvement.  However, we can still hear breath sounds in the right lung, so some oxygen is getting in.  As of right now, there has been no word on if surgery thinks another bronchoscopy will be beneficial or not.  Please continue to pray for the development and improvement of his right lung.

We enjoyed a lovely visit with our parents this past weekend; everyone was able to hold Kieran and get some cuddles before heading back to Wisconsin.

 Our little guy is getting bigger and stronger by the day.  As we reflect back on the last two months, it is astounding how our life has changed and how we have moved through this awful, beautiful process.

We are grateful for... 

Kieran's tenacity and spirit.  He is already moving mountains and he isn't even one month old yet.  We are so excited to see how he continues to learn and thrive each day.

Each other.  Brian and I have become a fortified team and we feel like we can take on the world.

Our friends and family.  Whether you are near or far, your love and support have helped hold us up during this insane time for our family.  Every call, text, card, prayer and sentiment has helped us and we can never thank all of you enough.  Thank you especially to Dan and Stephanie Osten, the King/Gulu family and Carolyn Rehmer for feeding us this week... our diets start next week 😜

Lurie Children's Hospital.  We are constantly in awe of the incredible staff caring for our son... and caring for us, too.  Thank you to Sandra, Laurel, Becca, Kerri, Nicole, Jen (x 2), Dr. Shaaban and his entire surgical team, Dr. Matoba and Dr. Henner.

Grace Pawlowski.  Grace is my niece and she created an incredible poster with the hashtag #kieranstrong.  Our family signed it during the Thanksgiving holiday and we have it displayed in his room - everyone at the hospital is so impressed.  It definitely encourages us all!  Thanks, Gracie! And thank you Jackson for the beautiful card.

My goal is to continue to update everyone about once per week.  Every day is filled with baby steps and it seems appropriate to hold off on posting until I can provide a big picture vantage on Kieran's progress.  Again, we are hopeful to accomplish some big goals in the coming days (full feeds, removing the central line, move from CPAP to high-flow), but we are cautious to remember that our little guy is the captain of this ship and he will let us know what is working and what isn't.

As we enter into the holiday season full tilt, we encourage everyone to proceed with an attitude of gratitude and love.  We often forget during all of the hustle, bustle and stress what this season is truly about.   However, as we come and go from the hospital daily, we are reminded that so many families are challenged with health struggles daily but charge ahead with love and compassion.  The kids we see at Lurie's everyday are an inspiration and make us want to spread the same sentiment of courage and kindness.  Be kind to each other. 

"As we express our gratitude, we must never forget that the greatest appreciation is not to utter words, but to live by them."
John F. Kennedy