Saturday, November 11, 2017

Slow, Baby Kieran Steps

"Today was a good day."
Ice Cube

Saturday, November 11th - Days in the NICU:10

Kieran has had some rock star days.  We are beyond happy with how he has fared only five days post operation.  This doesn't mean there haven't been some set backs, LOTS of tears, tough times or that we don't wish we could make major leaps and bounds in his recovery, but considering our little guy is only 10 days old and has endured a lifetime of physical tests in that amount of time, we are just elated with what he has accomplished.

Within the last two days, Kieran has had his chest tube, catheter and hand IV removed (win, win, win).   At this point, he still has his breathing tube and his PICC line (peripherally inserted central IV catheter - this is how he is receiving all his fluids, medicine and nutrition).  Unfortunately, Kieran's right lung hasn't decided to pep up... yet.  The doctors believe that there are some major clots and gunk in there preventing the lung from inflating due to the surgical trauma of the lobectomy.  We are taking the weekend to give Kieran's body some additional time to heal and open up on its own.  However, if as of Monday, the right lung hasn't improved, the surgical team will perform a bronchoscopy.  A bronchoscopy involves inserting a camera into your lungs for exploratory purposes and to remove said gunk.  Per conversations with several members of the surgical team, they feel that if this step is necessary, it will offer the boost that Kieran needs to get that lung open and working.  So, again... we wait and appreciate status quo days of him resting comfortably.

The highlight of the last 9 days since Kieran's arrival, happened today.  Today, I got to hold my son for the first time since his first moments of life and it was glorious.  I've held a lot of babies in my day, but today's experience was different and I was beyond nervous.  Kieran's situation is precarious, with tubes and lines everywhere.  I was so terrified that I was going to traumatize my little peanut or hurt him, that I was more inclined to just let him rest peacefully than embrace and kiss him like my maternal intuition was screaming for me to do.  Luckily, we had some wonderful nurses (Deb and Jennifer), along with Brian, who confirmed that we just needed to try.  Since the beginning of this journey, the doctors have told us that Kieran is going to steer this ship - if he didn't care for being held, he would tell us (via his heart rate and respiratory rate).  So, we gave it a shot and he did great!  I was able to hold my son for 45 glorious minutes and everything felt right for just a little bit of time.  I shed tears of joy... and so did some other participants in the room - it was a moving moment.

Our little family

Pure bliss with our peanut
There is definitely a steep learning curve when it comes to acclimating to daily life in the NICU.  I think it has been immensely helpful that Brian spent two years as an ICU nurse in Madison because he has an insight into pitfalls we needed to avoid when it comes orchestrating balance.  Not to mention, considering Brian was in the NICU for close to three months after birth, Brian's parents have offered priceless support on how they handled their challenging journey.  But it is no secret - this has been tough.  Of course we want to spend every waking moment with our child, but we know that he needs his rest, we need rest and taking vigil by his bedside isn't going to help him heal faster.

So, as of day 10, we have finally worked out a schedule to be with Kieran in the morning, take a break to nap and eat in the afternoon at home and spend the evening with him.  We spend roughly 8-10 hours a day at the hospital.  The first 9 days were very much "wash, rinse, and repeat" and we found ourselves constantly moving and running on empty.  There has been no shortage of advice from all directions that Brian and I need to take care of ourselves, too... as in we've been told this roughly 8,349 times and counting.  We know this comes from a place of love and concern, but we get it.  We know that we need to rest, but this is easier said than done and I promise that we are doing our best.  This is another aspect of our journey that we are learning to cope with and I think we are doing a pretty damn good job.  Are all our meals perfectly clean and balanced? No.  Are we getting 8 solid hours of sleep?  No, but what new parents do?  I can confidently say that we are working as a team to figure it out one day at a time and we will continue to get better at it with each passing day.

We look forward to another quiet day of healing and quality time with our little nugget and we are hopeful that with each day, our little guy is getting stronger and healthier.  Thank you to Kieran's amazing nursing staff (Jennifer, Deb, Laura, Ellen, Kasey, Linda, Chris, Mary Kate, Laurel, Victoria, Olivia) for your unending superior care.  Thank you to Sharmi Shah, Ernesto Ozuna and the Garcia Family (again) for feeding us delicious food this week.

"Sometimes the smallest step in the right direction ends up being the biggest step of your life."
Naeem Callaway