35 Weeks

 
        We've had a busy week this past week.  Christopher and I met with the pediatric surgeon and the Neonatologist.  Following these doctor appointments, we received some really good information to help us develop an idea of a plan for baby girl.  She has a very long road ahead of her and there are a lot of unknowns until she gets here.  One thing we learned based on our doctors appointments this week is that our pediatric surgeon would like to do the surgery around 6 months. There are plenty of variables that could change that but for the most part, based on the conversation with the pediatric surgeon, we are aiming for her surgery to be at about 6 months. As long as she is doing well and the omphalocele is the only thing going on with her, she should be able to go home before the 6 month surgery time frame.  The pediatric surgeon did say that she might require more then one surgery to repair the omphalocele.  The additional surgery would include placing an expander inside her abdomen to make room for the organs.  This is not for sure and will be another wait and see situation because it will all be dependent on how well she is doing and how big she is when they want to do the surgery.  The pediatric surgeon will be there and examine baby girl as soon as she gets to the NICU and will be a part of rounds to see her daily at the beginning along with many other doctors. 
       Following the meeting with pediatric surgeon a couple days later we met with the Neonatologist who is the NICU doctor.  She will most likely be who we become the most familiar with during our long stay at the NICU.  She was able to confirm and reiterate a lot of what the other doctors have been saying which is that we have made it past some good hurdles however we are not out of the woods yet and still have a long road ahead of us. This also meant that there is so much unknown still until she gets here.  So much of what her outlook and  survivability will be more determinable once she is actually here and all of her doctors can assess her.  They will look at things like how her heart looks and the main concern will be her lungs.  As mentioned previously low lung development is a common problem seen with omphalocele babies, which means that she will most likely be on a ventilator for a while.  She will also need an NG or OG tube that will help feed her, but they will try and make sure it is breast milk as soon as possible.  Finally she will also have a PICC line to her in order to provide nutrients deliver medicine to her so that it is all distributed to her body quickly. Until she is digesting breastmilk and feeding (either normally or through the NG/OG tube), all nutrition will go through the PICC line  As mentioned previously the weight of the omphalocele being outside her body puts weight on her heart and will probably pull it down some making it difficult to work normally.   The neonatologist said that most likely after baby girl is delivered Christopher will be able to come over and meet her and then as long as they can stabilize her they should be able to wheel her by me on the way to the NICU and all her doctors, that way I can see her for a minute before I get sedated and fixed up so I can go back to my room.