Sunday, December 17, 2017

Our Little Christmas Miracle

Our true gift
"All I want for Christmas is you."
Mariah Carey

Saturday, December 16th - Total Days in the NICU: 43  Days at Home: 3

Apologies for the tardy update (again), but we were very busy bringing our son home!  The last week has been a whirlwind in a very good way.  Last week was all focused on feeding; he was tolerating his feeds via bottle every three hours well.  As of last Friday, the plan was to feed him as he demanded, either via bottle or me nursing him, through the weekend and the team would reevaluate on Monday.  If he had gained weight and his labs came back positive, we could realistically discuss going home in a couple of weeks (what?!).   However, when the surgical team stopped by they made mention that this was the most difficult part of the waiting game because it sometimes takes kids weeks, if not months, to get feeding down.  They assured us that we wouldn't be stuck in the hospital for entirety of that time, but it was possible that we would need to go home with an NG tube to ensure Kieran was getting the proper nutrition.  We think Kieran was listening because he decided to pull out his NG tube himself (little stinker).  Because he was doing so well, the doctors didn't think it was necessary to put it back in unless his habits changed.  

While we didn't want to get our hopes up, we also knew that if Kieran would be coming home sooner rather than later, we needed to make adjustments to our house.  When we found out about Kieran's CDH at 36 weeks into my pregnancy, all preparations to our home stopped so we could focus on arranging the correct care for him after birth.  So, while it would have been great to have a perfectly pristine home and nursery waiting, that wasn't the case.  We called in the forces (aka our parents) to help us tackle some big projects.  As of Sunday, we had scheduled the ducts to be cleaned, the rug and furniture to be cleaned and sanitized and the dogs to be groomed.  My dad also set up a moving company to come haul out some of the stuff in our second bedroom to storage so we didn't feel so cramped.  We felt like we could have the house ready by Thursday, if needed, for him to come home.  

When I showed up to the hospital on Monday morning (Brian stayed back to meet with the movers), the nurse practitioner reviewed that Kieran had done exceptionally well and they were ready to release him the following day!  I was flooded with emotions.  I was elated at the thought of bringing my child home, but we just weren't ready.  We needed a few more days to get the house clean and ready for an infant.  After several conversations with the team, everyone agreed that Thursday would work well to send Kieran home - surgery needed to follow up on a couple of things and we would continue to work with speech to ensure feeding was going well.  During the following days, Brian and I spent the most time away from the hospital than we had during his entire stay, but we knew we needed to take advantage of the excellent care to prepare for his arrival.  Our parents were kind enough to come down and help us clean our place from top to bottom (literally).  We are so grateful for their unending willingness to help us. 

Snuggles with Laurel
Thursday morning arrived and as we wheeled in his stroller, I felt like I wanted to start sprinting before someone changed their mind and decided it was too soon.  But I will admit, it was a very bittersweet day for us.  Over the previous six weeks, Brian and I had spent roughly 860 hours combined with these people.  The NICU staff had become family; we were sad to say goodbye and they were sad to see us leave... Kieran had acquired quite the following.  We spent the morning reflecting on the journey, giving hugs, and taking pictures.  Various members of the staff came into room 1410 to get one more snuggle with Kieran before we loaded him in his car seat and hit the road.  Dr. Porta stopped by to discuss some of Kieran's follow up appointments related to monitoring pulmonary hypertension (which Kieran showed signs of at birth, but seems to have resolved itself); Dr. Porta was the first attending neonatologist to care for Kieran.  On one of the first days in the NICU when I was especially emotional, Dr. Porta told me, in a matter of words, "I'm going to care for him like he is my baby until he is healthy enough to go home to be your baby again".  He confirmed, with a big hug, that it was time for him to be my baby again.  Once again, I did my best to control my tears.  But this time, they were tears of joy... it finally was settling in that we were taking our baby home.
One more cuddle with Mary Kate
We asked Mary Kate (one of Kieran's primary nurses) to page Dr. Shaaban in the off chance he was in the hospital and had the capacity to stop by - we were thrilled that he did!  He reiterated what a miracle Kieran was and how quick his recovery turn around really was; he acknowledged that the road was bumpy but our patience and presence had definitely contributed to his success thus far.  His kind words were very humbling because we've just been trying our hardest to be good parents every day.
Kieran and his BFF, Dr. Shaaban

And then, it was time to go.  Mary Kate helped us get Kieran situated in his car seat and he fell asleep immediately.  He has been such a trooper and we couldn't wait to experience our son outside the confines of this fishbowl.  We all shed some tears (except Kieran).  Leaving Laurel and Mary Kate, who had cared for Kieran consistently over the course of his stay, was truly difficult.  Brian and I were tempted to just pack them up, too!  Laurel, Mary Kate, Sandra, Jen and Kerri especially got us through this time.  In their own way, each one of them lifted us up when we needed it, comforted us, taught us and cared for all of us.  Each one of them will hold such a special place in our hearts and, for sure, Kieran will grow up knowing their names and faces.  We owe them so much more than we can ever give them.   

NPs, Kasey and Chris

Respiratory Therapy, Brian and Kyle, and Robin

Our team the day Kieran left
The first step out of his room, I looked at Brian and said "I feel like we are doing something illegal.", but that soon faded.  As we made our way into the main hospital and out of our protective cocoon of the NICU, we both agreed that we felt so exposed; there were so many strange people surrounding our little boy who had been so sheltered for the first month and a half of his life.  Again, I felt like sprinting to get to the car.  The trip home was smooth and the dogs were anxious to meet their little brother.  Ali soon after was fine ignoring him, but Marley took some time to not get distressed every time Kieran cried.  Now, he just keeps a watchful eye like every good big brother should. Our first trip to the pediatrician went well.  Kieran has some weight to gain, but that is to be expected considering he only just started eating by mouth less than two weeks ago.  Don't worry - he is up for the challenge and eating every two hours in quantities that astound me and Brian.  

And now, it is like we are just normal, frazzled, tired new parents and it is blissful.  It is almost as if it all never happened, like a dream.  While we wish we were going to Wisconsin for the holidays, it makes more sense to stay in Chicago and continue settling in after the last 6 weeks of insanity. Not to mention, the cold and flu season is especially bad this year, so you won't really see us leaving our house until Spring (direct orders from all of our doctors).  We will also be keeping visitors to a minimum for now.  While we would love for everyone to meet and cuddle our little guy, he still only has 1-1/2 lungs and we need to protect him as much as possible from getting sick.  We love FaceTime dates :)  Thank you to the Vaccaro family and Tia Mathew for feeding us this past week!  We appreciate every meal - it lifted such a burden while we went back and forth to the hospital. And thank you to everyone who has donated to Brian's marathon efforts - you've helped us raise $715.00 of our $1000.00 goal!  

I have to thank my employer, McMaster-Carr Supply, for having such an amazing maternity leave policy.  Not only was it so incredible to be able to be at Kieran's side every day for the past 6 weeks, but the fact that I get to spend the next 4-1/2 months at home with him is amazing.  As of now, Brian is going to continue to take FMLA to be home with us until mid January.  These are precious days together that we will definitely cherish. 

We will continue to use this blog to post pictures and milestones.  To all of you who have been keeping us in your thoughts and prayers from afar via this blog... thank you.  Thank you from the bottom of our hearts.  We really believe that this was a group effort and all of you gave us and Kieran strength to move forward and beat the odds.  We are so grateful for our little fighter.  I wouldn't say that we love our son anymore than other new parents, but we do have an earned appreciation for his strong cry that wakes us up at night, small coos as we change his diaper and just watching him breath as he naps.  We just feel so lucky.  Merry Christmas!
First Packer game

"You're off to great places! Today is your day!  Your mountain is waiting... so get on your way!"
Dr. Seuss Oh, The Places You'll Go!