The drive home from the hospital was a fun one. It seems that Ella loved being able to look out the window and explore this strange new world she was in. She was awake for almost the entire ride without a so much a a single grunt. But the day was a busy one...visits with a nurse from the chemung county health department, two different equipment companys making drop offs for her feeding pump and her oxygen saturation monitor, and a trip to Ella's pediatrician. Exhausting and there was no rest to come. As some of our nurses had warned....Ella makes a lot of noise when she sleeps. And she slept fine...mommy and daddy not so much. Over these past few weeks, she is doing better and has a few quiet sleeping moments, but we have had to adjust and sleep in shifts. Hopefully as Ella gets older we can have more normal nights.
Once we were home, Ella continued to be afflicted with the most severe case of Diaper Rash I have ever seen. It continued to get worse and worse, and was so raw that it was bleeding whenever we changed her diaper. To try to help the healing, we began airing out her butt...and it was during this time that we started to noticed that she was also having blood in her stools (not good.) So off to the ER we went (as advised by our home visit nurse.) After spending almost an entire day at Arnot Ogden, we were able to rule out an infection (thank goodnes, since this would have required admitting her) and began to suspect that she was not tolerating her formula. We put her on Pedialyte for 12 hours that evening until we could see our regular pediatrician in the morning and almost overnight her cute little bottom was healing up...and no more bloody poops. So now we are on a special, very gentle formula (so special it costs $35 a can and is only available with a prescription.) She seemed to enjoying this much better....however we are now faced with finding the right balance with the calorie content. Ella liked the formula prepared at the normal 20 calories, but we need her to grow. So we have been increasing the calorie content gradually and the higher it gets...the more she hates it. Figures! So no end to the feeding tube in sight yet.
In other good news...Ella finally passed her eye exam! Her eyes have fully matured and no more signs of ROP! Her lungs are also doing really well and she is having much better oxygen saturatin numbers...and because of this we are beginning to wean her off some of her lung medications. Will be nice to get down from 7 medications to 3.
As of Friday (11/13) Ella was weighing in at a whopping 7lbs 4oz! Ella is really enjoying this time at home and is beginning to develop an entirely new personality different from her days in the NICU. She loves her swing...as does mommy and daddy. We are finding that she is a wee bit ticklish and she is growing stronger and stronger and likes to push up on her legs to show us she can stand (with some help.) We look forward to making even more progress this next month and are excited to have her home for the upcoming holiday season!
Thanks again to all for your love and support!
Love-Bill, Denise & Ella T
