So we had the potential diagnosis of Down syndrome, which was confirmed via the genetic test by the end of her first week; and add to that the life-threatening version of TMD. Little one came home from her birth hospital and was at home for a week, then she was admitted to the NICU at a different hospital after crashing in the day treatment area while they were trying to do a blood draw to check her CBC. This first week could be multiple posts in and of itself but I'm just going to move on and write an abbreviated story of her 56 day stay in the NICU. She would have been admitted to the PICU because she had gone home in between her birth and the time she crashed, but there was an RSV outbreak in the PICU so they sent her to the NICU instead. Side note : ironically, her sister had a 6 day stay in the same NICU 7 years earlier when she was born, so when little one was admitted, I knew exactly what the area would look like. Thank heavens for small favors.
The much abbreviated version of her stay in the NICU at Legacy Emanuel is as follows : admitted at 9 days old with critically high white blood cell count and after "crashing" in the day treatment area. At just over 2 weeks old, she developed a tear in her duodenum which resulted in emergency surgery. At around 3 weeks of age, she was given low dose Ara-C for 4 days, a chemotherapy drug, to try to reverse the climbing WBC, after several complete exchange blood transfusions had little to no effect. She had a broviac catheter placed to receive the chemo med and for blood draws and other meds. The chemo did the trick and ultimately put her TMD into remission (thanks be to God!), but then she still had to recover from her surgery, have daily blood draws to check her counts, be seen by nearly every type of specialist in the pediatric universe : Neonatologist, Hematologist/Oncologist, Cardiologist, Endocrinologist, Gastroenterologist, Audiologist, you get the "gist" of it. I guess we missed out on Pulmonologist and several others, but who's counting! There's nothing quite like being privy to a heated discussion between your newborn's GI doc, Hematologist and Neonatologist over how much the initial disease had affected her liver, whether she needed a liver biopsy and whether or not she'd be a candidate for a liver transplant. Oy! I felt like I was having an out of body experience, hovering over my child's bed and yet not recognizing that tiny body hooked up to all those wires as mine. Another thanks be to God, her liver made a full recovery and she didn't need the transplant or even the biopsy.
While waiting for a full recovery from her surgery and praying for the blood disorder to go into remission, she developed what is known in the medical world as "ascites." That is fluid build-up from the liver not functioning properly and the nurses described her abdomen as "angry." You couldn't miss why. She was bloated and stretched almost to splitting, at least it seemed that way. So she also got to have daily pokes with a huge syringe to draw off the liquid. Not a pleasant site for any Mom to witness. I'm sure my husband was thankful to have his day job. Then as the chemo promised to do, it sent her WBC crashing into the realm of neutropenia and landed her in isolation to ward off infection and prevent sepsis. MEDICAL DISCLAIMER inserted here : I a not by trade a member of the medical community. I just learned more medical vocabulary than I ever would have wished to in a few short weeks after my lovely daughter's birth.
The little one proved to be a prize fighter and she escaped the clutches of Death several times during her hospital stay. What ended up keeping us there longer was the need to get enough nutrition into her weak body. We chose the G-tube option and that was her final medical procedure as a neonate. We came home on day 56 with many good and many painful memories, and lots of equipment, plus a crash course in some basic medical training such as how to schedule and administer 8 different meds a day and how to feed our child using a breast pump and a variety of tubing. To be continued.....
No comments:
Post a Comment