The Sattler Scoop: Progress and Prayer Needs

Well we are officially the proud parents of a 5 lb girl! Casey sailed through 4 lbs and is well on her way to breaking out of the 5 lb club. As of today she weighs 5 lbs 10.5 oz, which means I have been busy washing and folding her adorable newborn wardrobe! The biggest celebration is that Casey came off of oxygen this morning!!! She has been at 21% oxygen (room air) on her nasal cannula for the past two days, so her doctor decided this morning to try her without any oxygen support and so far she is doing well breathing on her own. This is huge news, since just last weekend the doctor told me there was about a 25 percent chance she would could come home still on oxygen. Also, she is making progress on her feedings, and she is starting to finish 2-3 complete bottles and attempts about 3 others throughout the day. When she is too tired to wake up and eat, or the 20 minutes they allow for bottle feedings are up (after 20 min. she burns too many calories which will not enable her to gain weight), then the remainder of her feeds are being gavaged through her feeding tube. The doctors seem satisfied with her progress, and are indicating that she is on track for finishing all 8 of her daily feeds soon. Right now our little night owl prefers to save finishing her bottles for her middle of the night feeds, and is often more tired in the daytime (mommy is hopeful we can turn this schedule around before she comes home!) I spent last Saturday night with her, and while it was a really great feeling to be the one to soothe her and feed her throughout the night, the revolving door of nurses and the constant monitors alarming throughout the Special Care unit did nothing for my sleep deprivation. I'm thinking it may be a couple more weeks before our next mommy/daughter slumber party. As for her progress toward her other homecoming goals, she has been doing well with apnea/bradycardias for the past few weeks, but she has recently had a few bradys during her feeds. They think the episodes are most likely because she has been changed to a faster flow nipple on her bottle, and she may not have been quite ready.

While we definitely are celebrating and praising God for the amazing progress Casey has made, we also received some pretty upsetting news this week. On Monday, Casey had another head ultrasound, and the doctors had informed us it was routine and just a follow up to the one she had not long after she was born. When the doctor called me with the results that afternoon, we were pretty caught off guard to hear they determined Casey has grade 1 bilateral intraventricular hemorrhaging (bleeding in the brain on both sides). This has probably been the scariest news so far because it could potentially impact her future and what we can expect as she grows. The positive is that most grade 1 and 2 bleeds tend to correct themselves on their own, and there is really nothing the doctors need to do at this time. A grade 1 also does not necessarily mean that she will be more likely for long term disabilities, as grade 3 and 4 bleeds often do. Probably the most frustrating part for me is that she won't have another test until 5 months from her due date, which will determine if the bleeding has healed or if it has progressed. For us, this means more waiting, and if you know me, you know I don't do waiting well (Patience may be a virtue, it just doesn't happen to be one of mine!). This news is unfortunately not something with a quick fix, and I have to say that after two months of trying to stay optimistic throughout everything, this one hit me pretty hard. I will admit that I have been avoiding a blog update the past few days because I was still trying to come to terms with what this could mean for our daughter's future.

For now I am trying to stay encouraged by all of our good news, and for the many that continue to pray for us daily, here are our prayer needs: First, that Casey's body is working to heal the bleeding in her brain, and for us to remain peaceful that God is at work here. Also, that she continue to do well without oxygen and that she can remain off of the nasal cannula. Prayers also are needed that she can find some relief from the nasty diaper rash she has been suffering from, which despite many different creams and other treatment has just not healed.

Whew! Well if you have made it all the way through this long post, here are her latest pictures: