Sunday, March 22, 2009 9:03 PM, CDT
We are praising God for the gift of Leah’s life, and having already been blessed with 2 FULL DAYS together! We have spent this time getting to know her better and better, and love her deeper and deeper. We are getting to live out our "BEST CASE SCENARIO", in terms of God answering so specifically our many, many prayers.
So here is a brief medical update for everyone, as of where she stands as of Sunday evening. She is breathing COMPLETELY on her own! She hasn’t had a seizure since beginning Saturday on a daily dose of a very common anti-seizure medication. This medication does make her extra sleepy, but we’ve been able to attempt nursing due to the fact that her cleft is only on her lip and gumline – NOT her palate. Currently she is being fed both through IV liquids as well as through a feeding tube that goes in her mouth and puts it directly into her tummy. Luke and I have gotten to take part in several of these feedings. She now can maintain her own body temperature without a heat lamp, as she is just using warm clothes and blankets wrapping her up like a little burrito. 
In terms of tests and assessments, the first ultrasound scan of her brain was performed Thursday evening. The images were not good enough for the radiologist to make any interpretation from, so she will have an MRI done in the next 24 hours. This is the clearest way to assess her exact brain malformation and get a prognosis for legnth of her survival. Currently, our neonatologist does not agree with our prenatal diagnosis of Trisomy 13. He says that from the neck down he sees nothing that he feels points to a chromosonal disorder. He will send off for a very comprehensive test to determine exactly what her condition is, however it could take up to 2 weeks to get any results.
Her brain malformation is called Holoprosencephaly. (we knew this from the prenatal ultrasound, and this often occurs in babies with Trisomy 13 - 60% of them in fact, hence our prenatal diagnosis). This condtion of Holoprosencephaly alone…is very rare…only 2 babies in Oregon are born each year with it. This condition can range from mild to very severe. It is only with the MRI along with Leah’s progress that they will be able to determine how severely she may be affected….and how long they’d predict she could survive.
Leah’s progress - the doctors are saying that they are working with her being able to come home in the coming weeks. 3 main things must occur…and thus become our prayer focus.
1. She must be able to breath on her own. (the seizures were causing her vitals to drop)
2. She must be able to be fed and no longer require an IV with fluids. (currently she is half on formula, half on IV fluids, and they are working on weening her off the IV. Her blood sugars were VERY low, so they introduced fluids with the IV to help them stabalize)
3. She must be able to maintain her body temperature.
We’d LOVE to bring her home to spend as much time with her as possible. Our reality is that Leah will be able to do, only what Leah is able to do. We cannot expect any more, any less. She won’t have to follow or fit any textbook defination of any condition. God will allow her to have the life that He has planned for her. We are just blessed to be her parents and to get the opportunity to love and care for her while she is with us!
We would not be sitting here able to hold our daughter, listen to her cries, kiss her cheeks if it were not for all of the millions of prayers that have been offered up on her behalf! We are certain that God has heard our prayers…..the continuous intercessions for the life of our precious Leah! With the expectation that we would not necessarily get to meet her alive, and now we have been changing her diapers, practicing nursing, holding and rocking her for 2 days….we are so greatful to the Lord! There is relief from the months of grief, and joy over the memories our family has been able to create with Leah. God is holding us all through this, as we take Leah’s life one moment at a time…..and as we are creating new memories with each moment together!
We are now home and will plan on spending as much time as possible up at the NICU learning how to care for Leah. We’ll be very busy and hard to get ahold of, and we’re not sure if we’ll be able to have visitors with all the instructional time we’ll be having (PT/OT, Feeding support, Assessments, meetings with various doctors).
We are praising God for giving us time with our precious daughter, Leah!