Faces of Prematurity Friday~Jack's story

Friday, October 26, 2012

Thank you, Heather, for sharing Jack's journey.  I love every word you said, especially when talking about healing.  We will all get there.  It may not come as fast as we want or the way we are expecting, but it will come.  Someday
Here's Jack's journey. 
Many parents post cute pictures of their kiddos on Facebook; I often do that.  But, today, I took a picture of a 4-piece McNugget Happy Meal, with only 2 remaining nuggets, and posted it on FB.  Why, you ask?  Well, because I was completely overjoyed that my little man, Jack, ATE the other 2 nuggets.  I’m guessing that most preemie moms would understand this excitement.  You see,  Jack had an NG tube (feeding) until he was almost 8 months old and I never, never thought I’d see the day when he ate like a “typical” toddler during those long, exhausting, frustrating and overwhelming 8 months.   When Jack was 10 months old, I took him into our downstairs laundry room and cried actual tears of joy.  Yes, I cried because I took Jack into the laundry room….because until that day, he was tethered to an O2 concentrator and could only go between the kitchen and living room (which also served as his “bedroom” at the time).  Again, I’m thinking many of you reading this would understand that one too.  Here’s Jack’s Journey thus far:
I entered the hospital at 28-weeks pregnant with severe preeclampsia.  We were told that delivery of our baby boy was imminent and that we would need to transfer to a hospital that could care for such an early, sick baby.  On the same day that we chose a name for our baby boy, we were also told that it might not be possible to save both of us.  I have to say that I was completely unaware of what being born prematurely entailed, but I feared for my own life and was told that delivering was the only way to save both of us.  Jack entered the world at 10:12pm on August 10, 2010 with a little cry and a “Hello, Jack” from the surgeons.  Before I could even see him, he was whisked away to the NICU.  I was unable to see him for over 24 hours, but my husband had reported that he was looking good and very small. He weighed 938 grams or 2 pounds 1 oz and measured 12.5 inches.   Seeing him for the first time was awful and awesome at the same time.  He was so perfect, yet so very, very tiny.  His nurse gave me one of the tiniest diapers I had ever seen and I kept that diaper with me for a long time.  Any expectations that we had about pregnancy, childbirth and parenting had just been thrown out the window.  Our son’s first home was a hospital NICU and his first bed was an isolette.  We weren’t able to hold him in our arms until 11 days after his arrival, and even then we could only hold him when he was stable enough to do so.  Prematurity wreaks havoc on a little baby’s body and on his parents.  Jack was struggling to breath and was fighting for his life, something no innocent newborn should have to do.  We were thrown into a world of apneas and bradys and TPN and C-PAP.  Jeff and I began spending all of our spare time with Jack in the NICU, wondering every day if he would survive.  He spent almost 2 weeks on a ventilator (oscillator), then months on C-PAP, Si-Pap, and Vapotherm and finally nasal cannula.  We were not prepared for all of the dangers of prematurity, such as brain injuries, blindness, lung disease, etc.  Throughout Jack’s 112 day stay, he was cared for by amazing doctors, nurses and therapists. Some of them are even like family to us still, two years later.  Yet, I always have trouble answering when someone asks what our NICU experience was like, because I have conflicting views.  For the most part, it was awful to have to watch our little boy struggle to breathe, struggle to eat, struggle to survive and to have to leave him, over and over again, for 112 days.  But, knowing that he was being cared for by an exceptional NICU staff helped lessen some of our anxieties and fears.   

After a 112 day stay, we left the NICU with our definition of miracle.  Babies at Jack’s low birth weight and early gestation don’t always have the best outcome.  We were blessed that Jack only had one surgery and didn’t seem to suffer from some of the more common preemie issues (NEC, ROP, PDA surgery).  Unfortunately, we soon realized that prematurity does not end when one leaves the Penn State Hershey Children’s hospital.  Because of his lung disease, Jack came home on 24-hour O2 support and a feeding (NG) tube and many medications.  Basically, the hospital came home with us (without those awesome nurses and doctors).  It was completely and utterly overwhelming and exhausting.  The worst, for me as his mom, was being unable to feed him and give him nourishment “naturally,” from the breast or bottle.  I did pump for 4 months (which gave Jack breast milk for almost 6 months), but I was too stressed to keep up with the pumping when he came home.  The feeding tube kept him well-fed and plump, but made me so anxious that he would never eat normally (hence the posting a picture of nuggets on Facebook).   Jack eventually no longer needed the feeding tube (at 8 months) or the 02 support (at 10 months).  Because his lungs are still fragile, we take extra care to keep our miracle boy healthy and we are vigilant about his nutrition as well.  It’s been a long, emotional, exhausting, and amazing journey.   Jack is now 26 months old and has been healing from his early arrival with the help of many doctors, specialists, and therapists (OT, PT, ST).  He loves to run and play, read books, build with his blocks, swim, watch Disney Jr. and eat anything that involves cheese.  He is just starting to use words instead of signs too!  But, most of all, he is happy!  And it is my great hope, that the “healthy” will come. 

There’s so much more to say about how prematurity has affected not only Jack, but me as a mother.  So many don’t understand what it’s like to start life as a parent, as a family, in such devastating circumstances.  It affects your perception of every experience that lies ahead, for better or worse.  I have been angry and anxious, joyful and sad, overwhelmed and excited, frightened and blessed.  Some have noticed my anger and my sadness and seem to think that now that Jack is “fine,” that I should no longer feel these things.  But I know better, from connecting with other preemie parents.  These feelings are normal and often necessary to survive this journey through prematurity.  And my sadness and anger are justified, I feel, because they are directed toward the unfairness of our little boy having to start life in such a precarious position.  He is healing, though, and so am I.    But, I don’t think either of us have “caught up by 2!” 
 You can follow Jack and family at: http://jackryansjourney.blogspot.com/ 

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