Today we had our final visit with Children’s Hospital before the big day. Our morning started with a routine ECHO and consultation with the cardiologist. We learned a few new things about baby boy’s heart, but mostly went over step-by-step what we can expect at the birth.
First, the cardiologist told us she is struggling to see the ductus – the tube that allows blood flow in utero and closes within 48 hours after birth. In and of itself, it’s not a big problem if the ductus is not present. The other thing she is seeing is a web of ‘extra’ vessels where the ductus normally is called collaterals. The collaterals are also not life threatening and there are routine ways of dealing with them after birth that are not invasive to the baby. She also confirmed that she is still unable to see the right side of the heart, but continues to feel it is not quite right. She said, it either is perfectly normal and she just can’t see it, the baby may have what’s known as tetralogy of fallot, or may have hypoplastic right ventricle with tricuspid atresia. We won’t know until birth what we are dealing with and she outlined a few things possible for treating the above defects.
Secondly, she confirmed we will deliver the baby at Children’s hospital. Our c-section date is February 19. She walked us through what we can expect, which is – once baby boy is born, he will immediately be put on a breathing machine and assessed by a team of specialists. They will do a special ultrasound and ECHO (since his heart is exposed) to try and figure out what functionality the right ventricle has. From these less invasive tests, they should be able to determine what questions remain and choose from a list of more invasive tests what the best ‘next step’ is. This includes tests such as MRI, CT scan, and exploratory catherterization work. Those test will hopefully give us the answer to whether baby boy needs heart surgery in addition to closing the chest wall. And, based on those answers, he could have surgery within the week (if it is imminently life-threatening) or we may be able to push surgery off until he is older and stronger.
After our visit in cardiology, we took a tour of the Cardiac ICU (CICU) and the step-down heart ward. This was very emotional for me as I’ve been worrying about how much nurturing baby boy will have while I am not able to be at the hospital. The nurses seemed very caring and informed me there is one nurse to two patients and since the babies come at birth, the nurses tend to form strong bonds with them. They went further to say that they promise to take very good care of my baby. This struck at the core of my deepest concerns and tears streamed down my face in relief. After I was able to pull myself together, we moved on to view the CICU rooms. They are a pretty decent size and private. That will be nice for us when the girls come with me to visit. I won’t have to worry about them bothering another family and baby. Each room has pull out recliners for sleeping, a private bath with shower, a computer/TV and a little nurse’s station. Parents can be there around the clock and siblings can come as long as they are not sick or running a fever. They also have a family lounge where visitors can hang out that includes a fridge, coffee bar, vending machines, and a laundry room. This last one kills me. Now I have two places I can have the joy of throwing in a load of clothes. Actually, it’s very thoughtful for families who aren’t local and need a place to clean their clothes. I’m not sure what our first few weeks will be like, so I may be utilizing it sooner than I think.
Next, we moved on to my afternoon OB appointment with the doctor who will perform my c-section. Dr. Downing seems really nice – he is high energy and a bit quirky, but Henry and I both like him. He took a good deal of time explaining a routine c-section (since I’ve never had one) and also what would be different in ours. (Bascially, he will cut a little bit bigger incision in my uterus so he can cup his hand around the heart while pulling the baby out. during a routine c-section, the smallest possible incision is made and the baby is pushed and tugged on to bring it into the world. Dr. Downing does not want to do any pushing or tugging on baby boy, or allow any pressure to the heart. ) He also answered all the questions we had surrounding logistics the day of and throughout recovery. He quickly agreed that Henry could be with me while I get my spinal block and also that Henry can wheel me back and forth between the hospitals any time I am stable enough. I was happy on both accounts.
The day ended with an impromptu Biophysical Profile (BPP) which is much like an ultrasound, but they look for different physical signs of life like movement, heart rate, breathing (looking to make sure the diaphragm is working correctly), muscle tone, and the amniotic fluid level. We passed with flying colors. We do however have to go see Dr. Downing in DC weekly for the next two weeks, including getting repeat BPPs. The third week will be the c-section.
I can’t believe we are three weeks away from delivering this baby. All the planning that has gone into this birth and still we have no solid answers. We know that God’s plan for this baby is good and right, and trust that He will sustain us during this difficult time. We appreciate everyone who has reached out to us and will keep you updated as we get more news.
(c) 2016 Leighann Marquiss
Comments (8)
wow, leighann. thanks for sharing all the details. i can’t imagine all that’s swimming through your beautiful head. know that you’re in our prayers SO often!
Leighann, I know we don’t know each other very well, but I’ve been following your story and I admire your strength!
My thoughts are with you and your family.
girl, you are in my prayers and I love you so much. I know it’s going to be hard but I’m so glad that you didn’t let those doctors convince you to abort baby boy. You are an inspiration to me. I know I’m not physically close to you but if there’s anything I can do you know you can call me right? ha I miss ya.
Love
<3 Dottie <3
Leighann- Thanks for letting us know the date. We will be praying I will tell the Vances too! I am sure you are nervous about many things but know your Jesus has everything under control. I can’t wait to see what God continues to do through your family.
We are praying for you guys! Please let us know if we can do anything to help. We would be happy to watch the girl (even overnight) if you need any help with that!
Ps. I went to high school with a girl whose son just went through open-heart surgery not sure if it is the same thing your son might be dealing with or not but I contacted her in hopes she might be able to give you some encouragement and advice maybe… Just a thought her name is Hallie..
Wow that is so amazing! What a blessing Children’s Hospital will be for your family through this hard time.
I’m so excited you have a date and I’m sure you can’t wait to see your beautiful boy! Keep us updated. You and your family are in my daily prayers!
You know I’m praying, you don’t even have to ask. You do however have to keep us updated – always.
Remember, your family is beautiful and God is faithful. Always.
Melissa at Stretch Marks