Hey hey. So many people have called, texted, sent emails wondering how the NICU went. And some people never received the original email, I think it's because of the pics and some of the emails went to their junk mail accounts.
So, I decided to send out an update with the original email and without pics.
First of all, we should probably start out with a huge THANK YOU. There is not a day that goes by that Web and I hear of someone that has added Sweet Caroline to their prayer list. We are so lucky and we can't thank you all enough.
Per the last email, we were going to the NICU. Well we decided not to go. Not that we didn't trust the NICU and all they had to share, but we didn't want to bring our healthy baby to a place where infants need one on one attention at all times. Remember our Sweet Caroline's heart, lungs, brain, etc are all NORMAL. We didn't think it was fair to the parents that are at the NICU who need 100% attention to take away from their time for us to learn how to change a diaper. Plus, Web and I are whimps. We didn't feel comfortable in leaving our daughter overnight and us going home. We could have stayed at the Ronald McDonald house, but again we felt that the families that need the Ronald McDonald house deserved a bed over Web and I. So, after many conversations with the Children's Hospital coordinator, we decided that a home health nurse would be best for us. We were actually able to find a nurse that had some background in OI. This is such a rare disorder that it was tough finding a nurse that had experience. Matter of fact, our nurse had only worked with 2 other OI patients. Nurse Stacy told us that our Sweet Caroline had a much milder case of OI than what she had seen. That made Web and I happy. As sad and as rude as that might sound. But we were glad our Sweet Caroline was not the worst. Nurse Stacy gave Web and I much reassurance that we were doing what we knew the right way. That made us feel good. She did give us some great tips, i.e. egg crate for all the places we lay her down. So, off to Target I went. I bought an egg crate big enough for a twin bed and have cut it down. Caroline now has an egg crate in her infant seat, crib, bassinet, pack and play, plus her swings. It's truly amazing how many places a baby lays down! But whatever helps, we will do. The egg crate helps give a little more cushion to her pelvis. Besides her ribs breaking, we need to be extra careful with her pelvis as well. Nurse Stacy also met with our grandparents and talked to them about what they should and should not do. Web and I are very lucky to have grandparents that live near so we can escape for a couple hours every once in awhile. We know that Caroline is in good hands!
There are so many things I could tell you about this disorder, but I just don't want to dwell on the bad today. Caroline is doing great otherwise. She has gained weight! Her pediatrician was very proud of how much weight she has gained in 7 days. She has gained over 1/2 an ounce/day! She is now back to her birth weight, 6 lbs 4 oz. We go back to the pediatric orthopedist after Thanksgiving. Web and I are not looking forward to another day of x-rays, but we are anxious to see if her bones are continuing to heal, or if more are breaking. We also have quite a few questions to ask the doctor. Last appt Web and I sat in such disbelief that we just couldn't think of what to ask him. Now he is going to wish he never met us! I have started a list, and I will be armed next time we see him!
One thing that we do have to do sooner than later is move. Web and I love our house, it's old, historical, and in a great location of OKC. But we have stairs and hardwood floors. Nurse Stacy highly suggested carpet. We would like to be in a new house before the crawling begins. So probably after the new year, we will get down to business on finding a new home. I can say, that I will not miss going up and down our stairs about 50 times/day! Although it is helping in my quest to get back in shape!
If you do not want to receive our email updates, please let me know. I have had some people tell me that I should start a blog. I have honestly thought about it, because it would probably help me mentally. Maybe I will, who knows. Again, thank you for letting me purge my brain this rainy Sunday afternoon. It really does help.
We hope you all have a wonderful Thanksgiving!
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