I apologize that it has taken us awhile to post a blog update about our visit to MUSC. It has been quite a busy trip for us and we have “crashed” into our beds nearly every night because we have been so tired!
Here are some bullet points about our visit to Charleston:
- We arrived in Charleston really late on Tuesday night and got to the apartment. My dad’s cousin, David, and his wife, Mary Wood, let us stay in their beautiful apartment on State Street. It has truly been a haven of rest for us during our visit. We have rested well here and we are located close to so many great places to eat and enjoy. (Specifically: Dixie Supply for breakfast. BIG YUM) We are so thankful for the opportunity to stay here during our many visits with doctors and to be able to enjoy a little “babymoon” in Charleston together.
- Wednesday morning we started our appointments at 10:30am. First we had a lengthy ultrasound, so that our new Maternal Fetal Specialists could get their own pictures of Jude. It was great to see Jude’s sweet little face again and we got some great pictures of him yawning. I hope to post some of these when we get home. He is weighing in around 4lbs and has quite a big head (like his big sister). My amniotic fluid levels were still at 24cm too! (We’d rather them be lower, but they’ve remained below 25 over the last few ultrasounds, so that is encouraging.)
Then we met with one of the doctors to discuss our plans for me and for Jude’s delivery. Our doctor answered so many of our questions and took some time to explain what our delivery day might look like. Hearing about how things will be handled when he is delivered helped to set me at ease about his care and our opportunity to see him after he is delivered. Jude’s delivery date will be December 6th. Our doctors hope that I can carry him until I am 39 weeks pregnant. The plan is for me to come down to Charleston to stay when I am 37 weeks pregnant and stay until delivery. The reason for coming down a little early is so that I will be close to MUSC in case I go into labor on my own.
- Next we headed over to the Children’s Hospital and met with one of the neonatologists. It was so nice to have her all to ourselves to discuss Jude’s CDH and his care at MUSC. We did not learn anything new about Jude’s CDH. Basically, we must wait until Jude is born to see how he handles taking in oxygen and the results of his CDH and thereafter decisions can be made about his needs medically and when he can have surgery to repair his CDH. It can be so difficult at times to accept that a diagnosis of CDH means a lot of uncertainty. It is very difficult for doctors to predict any outcomes because CDH patients can handle their medical problems so differently.
(Side note: We will be meeting with the pediatric surgeon in several weeks to discuss the repair of Jude’s CDH.)
- After meeting with the neonatologist, we were given a tour of the NICU where Jude will be staying after his birth. We met nurses, staff members and a social worker, too. It was helpful for me to actually see where Jude will be and what life in the NICU at MUSC might look like. They were all very kind and we could tell that they take their jobs very seriously. It was scary and comforting at the same time. While we were in the NICU, there was a baby boy there who also had CDH.
- And finally we met with Melissa from Cross Bridge Ministries about where we will stay during Jude’s time at MUSC. I cannot remember if I mentioned this on the blog before, so please forgive me if I am repeating myself. A few weeks ago, one of the ultrasound tech’s at our local maternal fetal specialist's office gave us information about a ministry in Mt. Pleasant that provides free housing to families who have babies being cared for at MUSC’s NICU. I called and spoke with Melissa (who is a gem) and she shared with me the many ways that their ministry loves on and cares for families with sick babies at MUSC. We were immediately blown away by the support and prayers offered for us and our sweet baby Jude. We’ve continued to be overwhelmed by how much they want to care for us when we arrive in Charleston.
During our time with Melissa, we went to visit the house where we will likely stay during our time here. The house was simply precious and even has a playroom and a fenced in yard (with a swing set) where Annabelle can play when she is with us. It truly felt like a comforting “home away from home”.
So here are a few things we know from our trip:
1. We will be delivering on December 6th at MUSC and Jude will be receiving his medical care from the MUSC NICU staff.
2. We will be moving temporarily to Mt. Pleasant when I am 37 weeks pregnant and staying with the sweet folks of Cross Bridge Ministries.
3. We know that Jude’s condition remains serious and that his chance of survival is still 50/50. But we are confident that the Lord has planned all of our steps until this point and we are certain that he has planned all of our steps in the coming days, months and years. We are trusting in Him at each moment.
4. We truly desire your prayers.
What you can pray for:
- That Jude will not come early! Pray that he will stay put until his scheduled delivery date of December 6th.
- Pray specifically for December 6th and for Jude’s lungs. Pray that they will be strong and able to sustain him. Pray that there are no complications with any other area of his body too.
- Pray for the neonatologist and nurses who will be working on Jude right after he is born. Help them to have confidence in their observations of Jude and that they will be attentive to all of his needs so that they can make good choices for his future care.
- Pray for the pediatric surgeon who will be repairing Jude’s CDH. Pray that his hands will be steady, skillful and sure.
- Pray for us as we prepare for the changes ahead. We don’t really know for sure what our lives will look like in late November or early December. We are so ready to finally meet Jude, but nervous about the journey that awaits us.
What we are thankful for:
- A few days away together! After our many meetings on Wednesday, Brian and I have had some time together over the last few days in Charleston. It has been nice to sleep in, rest, eat, walk and enjoy each other. The Lord has richly blessed us in our marriage!
- Your phone calls, emails, and texts letting us know that you are praying for us during our visit to MUSC. It has meant so much to know that we are being covered in prayer.
- The many different generous gifts that have been given to make our load a little lighter.
Brian, Rose and Annabelle