Sunday, September 7, 2008

Marathon Doctor Day

September 3, 2008 - Well today was a marathon day of Doctors appts. We had our normally scheduled ultrasound to check out Bailey's growth, the weekly AFI/Stress tests, and an appt with the Neonatologists at the University of Utah. Needless to say, we were kept plenty busy this afternoon.

Ultrasound - Really no new news here this week. Bailey's arms and legs are very, very, VERY behind in development. As from the beginning, they have gotten progressively behind so this was not really a suprise. We know that we will have challenges to deal with once she comes but there is so much technology - surgeries, medication, etc - that can be done to help with this. Her thoracic measurements are still the biggest concern here - still at just under the 5th percentile which is what had made her such a high risk and made her chances of life become such an "ify" situation. However, we were very happy to see that her rig cage had grown 2 cm as well as her lung/heart measurement so, although small, they are still at the same percentile - no worse. All of her other organs as well as her spine and skull are still looking perfect. And again - we were so excited - she is still trying to practice her breathing!!! It is VERY slow and labored, but she is trying. Let's hope she does that when she is born.

AFI/Stress Test - My AFI number was still 28 - still a little high but they are just going to continue monitoring weekly. Stress test was perfect - she is still an active little thing!

Neonatologist consultation - This is one of the appointments that we have anxiously been awaiting for a LONG time. We knew it was going to be a tough one but we also knew that it would answer a lot of our questions and, hopefully, help us with some of the "unknown". We met with the Director of the Neonatology Group as well as a "Fellow" from the Group. We were very impressed with their knowledge of OI since most everyone we have talked to so far has known VERY little (if anything) about the disease. They told us exactly what they will do upon Bailey's birth depending on her condition. They explained that they, unlike a lot of Doctors, have to deal with sick and or dying babies on a daily basis. Because of this they understand that Parents would rather know exactly what was going on - good or bad - rather than just be told what the Doctors "think" they want to hear. They were very up front with us and explained that sometimes there is a time to just let go and sometimes there is reason to keep trying and work on the baby. They will help us to make those decisions. We talked about a lot of different options and a lot of different scenarios since we really just do not know what will happen until Bailey comes out and lets us know how she is. All in all, final result ... we felt very comfortable with them and have all the confidence in the World that they will take the best care possible of our little girl when she arrives.

The one change that did come from these appointments, however, is that we will be changing our delivery to The University of Utah Hospital rather than IMC. It was recommended because there is a very high liklihood that Bailey will need surgery immediately after birth. Because of this she was most likley going to be transported to Primary Childrens Medical Center one way or another. Due to her fragile bones it would be a much better situation to transport her just next door than to have to get her in and out of a helicopter, etc to get her to Primarys. I will keep you all posted if the date/time changes due to the change in Hospitals.

2 comments:

Jennie Stephens said...

Oh Jenn! What a trying day! But she is so worth it right! You are right about their being so much medical technology out there! Of course your sweet baby may have some medical conditions, but she will be such a blessed and happy baby! Please let me know if you need ANYTHING. We are neighbors for crynig out loud!

Très Sucré said...

Jenn, just wanted you to know that I was thinking about you and that you and your little baby are in our thoughts and prayers. If you need anything, even if you just need a yummy treat or a friend to talk to, please, let me know! Good luck with everything...