Q. I’ve just stumbled on this blog recently I’m not really sure what’s going on. What’s Clara have exactly?
A. Clara was diagnosed at about 18 week gestation with Congenital Diaphragmatic Hernia (CDH). If you want to read our story (without reading this entire blog) this post is a good summary. You can also learn more about CDH by visiting this website.
Q. Are you having a C-Section?
A. Right now, we have a scheduled induction, so we hope it will be a vaginal delivery. We do know that she’s big (and seems to have a particularly large head, thanks to her father), so it’s always a possibility we’ll have to do a C-section. If that’s the case, I’m okay with it. A vaginal delivery is supposed to be better for her and for me, but we’ll do whatever she needs when the time comes. (Yes, I’m signing up for the epidural. No pride here.)
Q. Will you get to see Clara when she’s born?
A. Yes! Probably just briefly for a moment before the NICU team begins working on her in Labor and Delivery. Then, they’ll take her downstairs to the NICU to do more tests, get a line in, and whatever else might need to be done. If she’s stable and doing well, we’ll be able to stop by the NICU again and see her before I’m moved to the recovery room. We won’t be able to hold her, but we should at least be able to touch her little fingers and toes and tell her over and over and over again how much we love her and how glad we are to meet her.
Q. When will Clara be transferred to Baptist Hospital (Brenner Children’s Hospital)?
A. Probably within the first couple of hours of her life. If there are problems or issues, they’ll transfer her quickly. If she’s relatively stable, they’ll give her a couple of hours to catch her breath (so to speak) and then transfer her to Baptist to be evaluated by the surgical team. There’s a special little transport vehicle just for NICU babies. It’s basically a NICU on wheels and she’ll be in excellent care! It’s only a 7 minute drive between the two hospitals.
Q. Wait! You’ll be at Forsyth Hospital and Clara will be at Baptist Hospital?
A. Yes. But not for too long. It sounds crazy, but it really is the best situation. Forsyth is best equipped for labor, delivery and post-partum care. Baptist is best equipped for dealing with very sick babies. We want me to be with the best doctors for me and Clara to be with the best doctors for Clara. If labor is relatively easy (Ha! Is it ever?!) and I’m doing okay, my doctor will discharge me early, after about 24 hours. If I have a C-section or other complications and need to stay longer, she will give me some passes to leave Forsyth and go over to Baptist for some stretches of time and then return. I know it might sound crazy, but we’ve thought through it and talked about it and it really will work just fine. Everyone is going to have the best medical care possible!
Q. When will Clara have surgery?
A. Ahhh… that’s the million dollar question. We’d really love to know the answer, but we don’t! It all depends on what happens once she’s here and tries to breathe air for the first time. It could be as early as a couple of days after she’s born or it could be several weeks. We’re praying for the former and a speedy recovery to follow, but the surgeons will know what’s best for her and we will trust them. Stay tuned to the blog for updates about a surgery date as we find out ourselves.
Q. Are you going to nurse?
A. I won’t be able to nurse at first because Clara will likely be intubated/ventilated and have a feeding tube. I am hoping to pump and give her my breast milk that way. Down the road, we may even be able to transition from bottle back to breast. But that’s a long journey and babies with CDH often have feeding issues. We’ll cross the bridge when we get to it, but we’d love to be able to nurse and will at least hope to give her pumped breast milk as much and as long as possible. It’s another great thing for you to pray for.
Q. Can we visit?
A. Maybe. Nobody will be able to visit Clara while she’s at Forsyth Hospital (not even grandparents!). Their NICU is still on Flu Alert and only the parents are allowed in. Once she’s transferred to Baptist, we can have up to 2 visitors in the NICU (including one of us), so there is a possibility. But we will also be happy to have visitors come spend time with us in the waiting room. You should definitely call or check with someone in the family before showing up though.
Q. How long will Clara be in the hospital?
A. That’s another unknown. The shortest stays for CDH babies are usually in the 3-4 week range. That’s certainly what we’re hoping and praying for! Some babies are there as long as 7-8 months…. That’s not usually a great sign. My thirtieth birthday is April 30… I’ve been saying the best birthday present in the world would be to have my baby home. We’ll just have to see.
Q. What will you need?
A. Your prayers, your love, your patience. Beyond that, we don’t really know exactly what we’ll need right now either. Maybe some meals, but we’re not sure when. Probably some people to drag us away from the NICU from time to time and help us re-focus on life and God and friends outside of the hospital. We’re not sure what else we’ll need, so again – please be patient with us and let us figure out what this is going to look like before you all start showing up with the chicken pies. We’ll take it a few steps at a time.
Q. Are you scared?
A. Yes. Find me a first time mother who’s not a little anxious about squeezing out a watermelon. I’m a little nervous about labor and delivery, but encouraged by some early progress and very very very grateful to have the best doctor in the world. I’m really not terrified or panicked. I’ve always said I had birthing hips. I can do this! I’m scared for Clara, too. It will be hard to watch her struggle, sad to see her hooked up to wires and machines, difficult to not be able to hold her or fix her. So, of course I’m scared. But I also have a great peace about this (most of the time!). There are so many blessings surrounding us… we really can’t even believe how fortunate we are in so many significant and meaningful ways. I’m excited about becoming a mother! I’m eager and ready to meet my child! I’m a big hormonal emotional fruit basket. So scared is part of it, but there’s a lot of other great stuff going on, too.
Q. Is it hard for you to talk about this? Should we not ask questions?
A. Really? Me? Hard to talk? About anything? Nah…. Now, I might randomly break down on you and start crying. But for the most part, I’m more than happy to tell you what I’m thinking and feeling and answer any questions you have. Hopefully if nothing else, this blog has shown you I’m a pretty open book. So don’t feel like you have to tiptoe around us. We’re okay. Really.
Q. How can we find out what’s going on?
A. We’re so thankful for so many people who are loving us and concerned about us! We probably can’t answer every single phone call/email/text/Facebook message. But know that each and every one means a lot to us. The best way for you to find out what’s happening is to check the blog. Both hospitals have WiFi and it is our intention to update, when we can. We’ll post photos and let you know how Clara is doing whenever the chaos and craziness calms down enough for us to do so. We’ve got a call list of folks we’re going to try to reach by phone after she’s born before we broadcast to the whole world wide web. I’m still new at this whole public persona thing. But the blog is your best bet for staying in touch. All those other methods work too, but be patient with potentially slow/absent responses.
Q. What should we pray for, specifically?
A. Pray that Clara will be a fighter. Pray that she will respond well to the medications, treatments and surgeries that she will face and that her condition will be able to be corrected with minimal side effects or lasting problems. Pray that her lung is big and strong and that she is able to use it well to support her life. Pray that we will have a relatively short stay in the NICU and be able to bring her home to begin our lives together here as soon as possible. Pray that she will not experience pain or suffering and that she will be courageous. Pray that she will know how much she is loved.
Pray also for the medical staff at Forsyth and Baptist Hospitals who will care for Clara after her birth. There will be many neonatologists, pediatric surgeons and NICU nurses who touch her and care for her. We are thankful for the medical community that we will become a part of and pray that God will give these people wisdom, grace, skill and compassion as they care for Clara and for us.
We ask for prayers for our family as well. We know we have some challenging times ahead of us and we are asking that God will give us the strength and courage to face whatever we have to face. We pray that we will continually seek Him during this difficult time and give Him the glory for all the miracles we experience. We pray that the lives of many people will be touched by Clara’s story and that we will be good examples of Jesus’ love throughout this.
What other questions do you have? We're happy to answer them. Don't be afraid to ask!