How we got here...
In December 2010, Andrew and I found out that we were expecting our first child. The news was an early Christmas blessing, and we couldn't wait until late summer when we would meet our first child. In April 2011, we found out that we were expecting a baby girl. We decided to name her Adeline Penn Daniel. She will be the first granddaughter (following 3 boys) on my side and the first grandchild on Andrew's side. We already anticipate her running the show! After several ultrasounds to get a clear picture of her heart, at 22 weeks our little girl was diagnosed with Double Outlet Right Ventricle (DORV). In short, this means that her aorta and pulmonary arteries both come out of her right ventricle (instead of the aorta coming out of the left). In addition, she also has a large hole between her two ventricles, which is actually a good thing because it allows blood flow to her left ventricle which will be extremely helpful when she takes her first breath of air.
To be told that your baby girl has a congenital heart defect and will require open heart surgery at birth is nothing you expect to hear. After being told by my doctor that she didn't know what was wrong but that she knew something was wrong with my baby's heart, we were thankful to hear the words "It's fixable but your baby will need open heart surgery at birth."
Up until this point my pregnancy had been very routine and fairly easy, and thankfully it has stayed that way since her diagnosis (despite the multitude of medical appointments with various specialists across the state). Heart defects in babies are the most common birth defects, but Adeline's defect only accounts for 1/10th of 1 percent of all babies born. In addition, only 1/10th of those 1/10th of 1 percent receive a diagnosis before birth. Needless to say, it's very rare. After being told about Adeline's heart, Andrew and I went through several emotions - shocked, scared, denial, and then finally thankful that we knew before she was born.
Many blessings have come of this journey so far, and one of the greatest is the level of care Adeline will receive once she is born. I will deliver at MUSC in Charleston. MUSC has one of the top pediatric cardiac programs in the country with amazingly talented surgeons. From every doctor to nurse to staff member whom we have met, we feel very confident and blessed to be at MUSC. We have been told nothing but great things about MUSC. This is never a road that we thought we would walk, but we feel that we are in the best place under the best care possible.
For now we have temporarily moved to Charleston. I'm due in a week and a half (August 29th), and the doctors are letting me go into labor on my own. Once Adeline is born, she will be taken to the Pediatric Cardiac Intensive Care Unit (PCICU), and her doctors will then determine the exact plan for surgery. Surgery will be within 4-7 days after she is born. We are praying for only one surgery, but it could be as many as three. The doctors will need to get a clear look at her heart before they can decide the plan to give her the strongest heart possible. I've wanted to keep her inside of me because her heart functions completely fine now (as she is not having to breathe and oxygenate blood on her own), but now I am ready to meet our little girl and begin this next stage.
Throughout the past four months, Andrew and I have been surrounded by prayers and so many blessings. I decided early on that sitting and worrying wasn't going to do a bit of good, so I've tried my best to remain positive. I've definitely had my days, but I know that I must be strong for our daughter. My doctor told me the best thing I could do was treat this pregnancy like any "normal" pregnancy because Adeline senses my emotions. For now we are praying that she stays healthy and inside of me until she's ready to make her debut, a safe delivery, wisdom for her doctors and nurses as they prepare to take care of her, comfort and peace for us and our families, and a strong heart that will require only one surgery.
I'll leave you with just the beginning of the list of blessings...
- knowing in advance about our baby girl's heart and being able to prepare ourselves as best we can
- medical technology and the doctors and nurses who have been referred to us as "gifts from God"
- strangers who have reached out to us to share their heart baby stories
- a beach house to live in while in Charleston
- countless prayers from people we know and complete strangers allowing us to feel God's grace and comfort
- knowing that God is in complete control
- our families who have helped out tremendously and been so supportive
- friends in Charleston to welcome us and make this transition easier
- Andrew being able to work from Charleston
- people offering support in so many ways, and one day we hope that after having gone through this experience we'll be able to pay it forward to others in need
- Adeline has thrived in utero
- if we have to be away from home for several weeks, the beach isn't a bad place to be :)
I am a friend of Elizabeth Wylie and she told me about your daughter last night! My twins were born at MUSC in July 2008 because my little boy was diagnosed with Tetrology of Fallot at our 20-week ultrasound! I would love to talk to you and give you a sense of your days to come! My son, Ian, had his first open heart surgery at 9 days - we came at a month old - and returned to MUSC at 7 months for his full repair!! Please email me your phone number as I would love to be a sounding board and "know what you are going through" supporter! My email address is firstname.lastname@example.org!!ReplyDelete
I, too, have a daughter with a complex CHD. Mary Clare was born in June 2007 with Hypoplastic Left Heart Syndrome. Her first surgery at 5 days old, her second at 5 months old and her third and final (hopefully) last March at 4 years old. Our story is at www.babypennington.com. My heart aches for you, but you can do this.ReplyDelete
I'm here if you need me. I'll be praying for you and your baby girl.
We are praying for you and specifically praying for peace, for Adeline's heart to be strong, and for Jesus to hold you all so close the entire time!! Love you, friend, and I am so proud of you!ReplyDelete
christin, gayle forwarded me your blog link, and i just wanted you to know i'm praying for you guys. i can't imagine what you've gone through and all that you are experiencing right now. but after reading your encouraging story, i'm so hopeful to see how God will continue to provide! i can't wait to see pictures of sweet adeline!ReplyDelete
Christin & Daniel, as you already know, you guys are wrapped in a blanket of prayer! I know that your emotions will ebb and flow, but we know that God is in control of everything. AnneKatherine is a testimony to the power of prayer and positive attitude of parents. We loved her, sang to her, prayed over her, and held her while we could during her 8 weeks stay in the NICU! We heard the whole laundry list of "maybes" and she is a healthy first-grader today. I thank God for my miracle every day, and I am also thankful for your miracle, too! God loves to hear our praise and, I am sending up lots of praise for you guys! I can't wait to see sweet Adeline!ReplyDelete
We miss you neighbors!!! Hope the storm stays away from the coast. I was worried about moving our camper, didn't even think about what it might mean for you!!!!At least you have shelter in-land if you need to evacuate. I would love a little visit!!ReplyDelete