DuPont!

Yesterday was our long awaited consultation with Dr. Bober at DuPont! I haven't really mentioned much about it so I will give a little background story first. My husband and I joined an OI Parents board on Facebook shortly after we found out about Gavin's condition. We introduced ourselves and gave a little information to the other parents about where we had been going and what was going on with our son. Every single parent was overwhelmingly recommending that we go to the DuPont Clinic and meet Dr. Bober, who they said was amazing with skeletal dysplasias and OI specifically. They said that DuPont is considered an "OI Center of Excellence" and that we should most definitely meet with the team there if nothing else. 

We spoke to the fetal coordinator Tammy who set everything up for us. She scheduled a consult with Dr. Bober, a consult with the cardiologist whose name I believe is Dr. Thacher, and also set up a tour of the DuPont NICU and of the Ronald McDonald House across the street. 

First we met with Tammy and Dr. Bober. I have to have a small side note and say that Tammy was one of the most caring and sincerely wonderful people I have met. She was so unbelievably helpful and stayed with us the entire day. She is amazing. Okay, now back to our day. Dr. Bober sat with us for over an hour and really explained so much about OI, the possible health complications that could arise, and the treatments available. He said that Gavin's chest size looks great, but another thing we need to be cautious of is the rigidity of and amount of fractures on the ribs. If there are too many fractures, this is a sign that the ribs will not withstand breathing and that would most likely be a lethal case. The strength of the ribs is also something that we will need to be concerned with, but this is something that we will not know until Gavin is born. Dr. Bober told us that the only one who really knows how things will go after birth is Gavin, and we will have to see how he does. If the ribs are strong and he has no issues breathing, that would be our best case scenario. But he said that most likely there will be some give to his ribs and there may be some respiratory issues. This, however, he said does get better with time. He also made it apparent to us that when Gavin is born he will have fractures and that we will need to prepare for that. They will give him morphine and that will help with pain management. He also said that the first week or so will be a "wait and see how he does on his own" kind of week. We will monitor him and wait until his fractures have some time to heal before setting us a course of action. He may get PAM treatments shortly after birth or 3-4 months after birth depending on how our little guy does. He also explained rodding surgeries and Tammy said that we will get to meet with the orthopedic surgeon to go into more detail about that end of the treatments at a later date. Overall, I left this appointment feeling so much more informed about our baby and what will happen from here on out.

Next we met with the cardiologist and she went over Gavin's VSD with us. We didn't get to speak long with her because we already had the information we needed about his heart. She said she would like another fetal echo to be done before birth and that it seems to her like it is a moderate to small size now and should not be of main concern to us at the moment. 

After that we got to have a tour of the DuPont NICU and actually got to meet a family in the NICU that had a baby with OI. We got to speak with them for a little about how they had lots of concerns and he was born perfect to them. They were worried just as we are now and although he has fractures and its scary, it is so different once your baby is born. It was great to get to see them and their son was absolutely adorable. The NICU itself is a really great space and they even said that we can bring our daughter in to visit with Gavin once he is transferred to DuPont. 

Last on our agenda was the Ronald Mcdonald House. It is not even a minute drive from the hospital and it seems like an amazing place that we will be able to stay for the duration of time that Gavin is in the hospital. There is plenty of play rooms that would be great for our daughter Ayla, meals provided every night for dinner, and you can stay as long as needed while your child is in the hospital. It is great to have such a wonderful resource so we can be close to our little guy while he's in the hospital. 

Overall I am so happy with our meeting yesterday, and we have decided that we want to receive Gavin's care through the Nemours/DuPont Clinic. We will have our delivery take place at Jefferson Hospital in Philadelphia where Gavin will stay until I am discharged from the hospital. Then once I am discharged he will be transported with a team by ambulance over to DuPont where he will stay until he is ready to go home. I am feeling much more at ease now that we at least have a tentative plan for our little guy. I am very ready for December to come so we can see what our little guy can do!