The Preemie

Here is the PDF file of my popular post, How to Survive the NICU or you can check out the link on my blog HERE.

Prematurity is something I only read about, a statistic, a sad news story, something that happened to “other people.”  Then, it happened to me.

I had parenthood all figured out until September 18, 2009 when we welcomed our fifth child, Luke Timothy, at 3lbs. 9oz. and 36 weeks gestation. By all accounts, a 36-weeker is “old” in the NICU, but Luke was an IUGR baby (intrauterine growth restriction) and did not grow well in my belly.

You can read about our initial diagnosis HERE, the results of all the testing HERE and HERE and his birth HERE.

Our first week in the NICU was spent increasing feeds, working on nursing and tanning under the billy light. My husband and I were feeling confident about his progress and hopeful that our stay would be a short one. On day seven, we had a small intestinal infection scare – necrotizing entercolitis (NEC for short) but it passed after 24 hours. On day nine it came back with a vengeance. While we were visiting with the priest in my hospital room, Luke coded and had to be resuscitated.  He was transferred to Dell Children’s Medical Center and underwent emergency surgery where he lost 16cm of his small intestine, part of his colon and his appendix. His health was so dire, our priest performed an emergency baptism in Bay 2 in the NICU before his transfer.

We endured two weeks of healing and when reintroducing feeds, the NEC came back. We were devastated. Progress was painfully slow. Then, it was bad news about the heart (he has two holes), then the testicles (one was undescended), the kidneys (both were small and one is pelvic), the brain (the MRI showed cysts on both sides of the brain) and the spinal cord (it was tethered and would require surgery to correct).

After 44 days in the NICU, we were sent home, along with our nine-page discharge sheet. It was full of a litany of procedures, patient history, medications, follow-up appointments and “unresolved diagnoses” including various major organs.

While we had a fantastic support system at our children’s school and our church, the process of navigating the waters of specialist appointments, developmental assessments and the like was daunting. By nature, I’m not a wallflower mom, but this was dizzying. We were introduced to an amazing non-profit, Hand to Hold, founded here in Austin, that paired us with a NICU mentor.  If YOU are a NICU parent or you know someone who is, you need to be clicking on that link.  I mean it.

Since our discharge on day 44, Luke has endured two scheduled surgeries, one emergenecy surgery, an unexpected but minor surgery and two surgeries still hang in the balance.  He’s had a helmet, leg braces and more occupational and physical therapy visits than I care to calculate.  There is so much growing, developing and ‘unknowns’ left in the balance, but there is so much progress to celebrate.

When I told God I wanted to increase my prayer life during Lent 2009, I had no idea this is what He had in mind.  Luke has been our lesson in FEAR, HOPE, JOY and an amazing JOURNEY.