Updated: Feb 10, 2019
It's been two weeks since Jack’s team identified early stage Necrotizing Enterocolitis (NEC). After a week of antibiotics, about 2 weeks of gut rest and plenty of tests we’re happy to report that Jack’s intestines appear to have healed! His team restarted his feeds yesterday and we are praying that his growth rate gets back on track.
Jack did fairly well over the last couple weeks in spite of his gut struggles. He was more sensitive to sound and touch than usual which is hard for us since we are already so limited in what we can do for him. When we can't comfort him we feel pretty helpless. But the last few days he’s been more himself and I’ve been able to hold him skin to skin again which he seemed to really enjoy today. He settled right in and drifted off to sleep.
He has gained a little weight, gotten a little longer and is starting to look more like a full-term baby with a little chub on his face. Even though his weight tends to fluctuate he is over the 3 pound mark now and seems to be holding steady. He has fallen off of his growth curve, landing at about the 2nd percentile on the preemie scale but that's not a surprise given how much he's gone through. Although Jack is small for his age he is trending in the right direction. The focus now is regulating his feeds and helping him grow. They are starting very slowly, giving his system plenty of time to adjust as they gradually increase both volume and calories. We met and spoke with the dietician this afternoon which was very helpful and informative. We were quite concerned about the type of fortification that will be added to his milk as he has responded very poorly to two types. We went in ready to advocate for alternate options and were pleased that his team was on the same page. What a gift to be able to rest that he is in the care of such a capable and caring team!
Jack has had two more eye exams and there is still no R.O.P. (Retinopathy of Prematurity) disease detected. Praise the Lord! His doctor told us today that many premies have eye disease at this point so we are grateful that the God has protected his eyes so far. John and I were both holding his tiny hands this afternoon when he opened his eyes and looked back and forth at each of us. It was as if he recognized us. His eyes are still too immature to really focus on anything but that moment was precious; one I will never forget.
Jack’s lungs are growing and expanding and he is breathing well overall. The respiratory team was able to wean his ventilator to the lowest settings to date. We are hoping he'll continue to make progress toward moving off the ventilator in the coming weeks. As his lungs have gotten stronger, so has his cry! What started as little sad squeaks has turned into the tiniest newborn-sounding cry, shaky lips and all. Never has a sound filled me with such sadness and joy simultaneously. Jack has always been very expressive — a big help to his nurses as they are able to see his comfort level. They joke that although Jack is very small, he has the biggest opinions in the NICU! He is really starting to make those opinions heard. One thing for sure is that Jack loves his pacifier, just like his sisters before him. This is helpful because not only does it soothe and comfort him but also it helps stabilize his oxygen saturation without having to use a chin strap to keep his mouth closed.
Thank you, dear ones, for hanging in there with us as we walk this long road. We have made it through another crisis with tiny Jack proving again how mighty he is and how kind our Lord is. Your prayers are being answered so graciously.
"I need Thee every hour, most gracious Lord; No tender voice like Thine can peace afford. I need Thee, Oh, I need Thee! Every hour I need Thee! Oh bless me now my Savior; I come to Thee."
-Annie Sherwood Hawks (1836-1918); Robert Lowry (1826-1899)