Meeting with the Heart Surgeon/Visit to the CICU

Heyyyyyyyy. Long time no blog. Things have been more or less the same, other than me having a couple break-downs and finally acknowledging to myself that I’m going to have to get some help. Having 2-3 doctors’ appointments a week and having to constantly find care for the girls while I attend the doctors’ appointments proved to be too great a strain. Seeing doctors for this baby girl is starting to seem like a full time job!  So, finding and interviewing potential nannies it is.

Today, we had an important appointment for Miss Regina. We went to the children’s hospital where she would be having her open heart surgery to have another fetal echocardiogram, meet with the cardiologist, meet with the heart surgeon, and tour the CICU (Cardiac Intensive Care Unit) and step down unit (called the CSU) where Regina will be after her open heart surgery. I have been dreading this appointment for months. I felt like the information would be overwhelming and seeing the babies in the CICU with all of the tubes and wires sticking out of them would make me bawl. BUT! The appointment actually went really well, considering.

While the sonographer was doing the echo, Rhea looked at the screen when the wand was over the top of Regina’s head and blurted out, “Ball!” (Yes, we had to take Rhea with us. Again, babysitter limitations.) The cardiologist was very impressed she could see Regina’s head shape so clearly and said she was going to be a future sonographer for sure. The cardiologist said that Regina’s diagnosis is the same as it was before: straightforward AVSD. She classified it as “balanced,” meaning that both sides of her heart were a good size, and the left side wasn’t looking too small. She has holes where the walls of her chambers should be, and a common valve instead of two valves running down the center of her heart. The cardiologist was reassuring about Regina’s delivery, and said that if she ends up spending time in the NICU, it will probably be for issues related to her Down syndrome and not related to her heart. She said that if everything else is fine, she will probably be able to be in the regular nursery and then head home with us. I really hope so!


FEEDING! Luckily, the whole team we met with at the children’s hospital was extremely supportive of my breastfeeding Regina, and in fact said that breastfeeding would be their recommendation as she will be born during peak cold/flu season (which can be deadly for heart babies) and Regina will need those immunities and antibodies that breast milk provides more than ever. However, babies with Down syndrome tend to have low muscle tone and a weak suck and might not breastfeed well. I have only pumped a handful of times with my other babies, and I loathe it and always swear that I will never do it again. Well, looks like I will have lots to offer up for Regina while pumping this time around. The other problem (besides low tone and a weak suck) is that she is going to be burning a lot of calories breathing and keeping her heart pumping. Possibly more calories than she will be taking in. So, in order for her to grow as well as possible so that she can have a less risky open heart surgery, we might have to add some extra calories to my expressed breastmilk in the form of a fortifier. She might not be able to handle the work required to suck, swallow, and breathe at the breast or the bottle, and might need a feeding tube to help her gain weight. Basically, my main objective until her open heart surgery is going to be: pump, pump, pump, feed, feed, feed, grow, baby, grow. A bigger baby= a better open heart surgery.

No pressure, Sylvia.

The heart surgeon then came in to meet with us and told us that since Regina tested positive for T21 (Down syndrome), she will probably have her surgery closer to 3 months than 6. She will be in heart failure by then. Her lungs will be filled with fluid and her breathing will be high and fast. (Awesome.) He did add that babies with T21 actually seem to handle open heart surgery a lot better than typical babies. Which is good to hear, I guess?

Then, came my tour of the CICU.  Rhea wasn’t allowed in there, of course, so Scott took her downstairs to the hospital garden. The nurse said I didn’t have to go in there if I was too nervous, but all of the parents she has shown in there have said it was a relief to see it. She also said that I didn’t want the first baby I see in the CICU to be my own. Fair enough. I put on my big girl pants and ventured in. And it actually was a relief to see it. It was a very calming place. They introduced me to a sweet, tiny newborn that had her open heart surgery last week. She still had a breathing tube in her mouth because she was so young, but they said that older babies usually get their breathing tubes out within a few hours after surgery. There were about a million machines with blinking lights next to her giving her medicines and IV fluids. She only had a few blue wires coming out of her chest to manage the pace of her heart, which can sometimes be irregular after surgery. All in all, not nearly as horrifying as I was afraid it was going to be. The staff all seemed gentle, caring, and completely competent. I’m sure I’m going to feel differently (read: stressed to the max) when it is my baby in there, but it is good to know she will be in good hands. The step down unit was much like our rooms after we deliver a baby at our usual hospital. It is a private room with its own bathroom and a pull out couch. There are lactation rooms in the CICU and the step down unit to pump in, with bags provided to label and give to the nurses. There is also a lactation consultant on staff. There are dorm-like rooms to stay in while Regina is still in the CICU, but whom can stay there is designated by a lottery system, and quite frankly the rooms are pretty bleak looking. We live too close to the hospital to qualify for Ronald McDonald house, unfortunately, because with Atlanta traffic it will probably take us about 45 minutes to an hour to get there despite the relatively short distance. Oh well, we’ll figure something out until she is in the step down unit and we’ll get to stay with her in our own room.

I know. Information overload. Luckily I took my notebook and pen to jot down notes and they gave me a notebook full of useful information and sent us on our way. They said we wouldn’t need to see them again until it was time for Regina’s open heart surgery. After she is born, we’ll be seeing a cardiologist regularly to monitor her heart failure, though, so that they can decide when is the best time to schedule her surgery.

And as a reward for making it through this information dump, I will enclose a few pictures of the other girls while we were at the open heart surgery expo today. My lovely cousin took them. You’re welcome.

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18 thoughts on “Meeting with the Heart Surgeon/Visit to the CICU

  1. Tiffany

    Hi there! Just came across your blog on Instagram when I noticed we go to the same pediatrician. My little girl spent a some time in the CICU and step down when she was born and I was blown away by the level of care and attention we received. Your sweet girl will be in such good hands. I’ll be praying for your family. ❤️

    1. Post author

      Hey! I was so impressed with them too. I really wish we could fast forward to OHS and skip the feeding, growing, and heart failure part. So happy to hear you had a good experience! Thank you so much for the prayers. We need them.

  2. mbmom11

    Hi – Here via Sancta Nomina – I hope things go continue to go well with your daughter and her heart. My last daughter was born with DS (a surprise for us as I didn’t do any testing), and it is a great life she leads! I hope your other daughters will grow to love and cherish her as fiercely as my kids do their sister.
    My daughter couldn’t nurse (she was born with IUGR,) so I did the whole pumping and fortifying milk things. It’s a pain but you’ll find a rhythm!. I think I used the medela pump in style – I needed one that was easy to transport for work and it was on sale at Amazon the night she was born. (Amazon prime in the hospital was my lifesaver.)

    I’ll keep praying for her and you – and may the medical professional who work with her and you be blessed with skills and compassion!

    1. Post author

      Thank you so much, Mary. You have no idea (or actually you probably do) how encouraging it is to hear from other moms with children with DS. Seriously, feeding her has been stressing me out the most, but I’m glad that I can at least pump for her. I’ve been looking at pumps, and I like the Medela. I think that is what I’m going to get. I wholeheartedly appreciate the prayers as well. We need them! God bless you and yours.

  3. Jacqueline

    I know I’ve sent you this before, but please, please, PLEASE….if there is anything I can do for you/help you with/answer for you/anything at all…please call/text/email me! Send me a message on IG and I’ll send you all my info!

  4. Elise

    Stay strong Momma! My oldest was born ten years ago at just 28 weeks. The pumping and feeding issues are familiar to me. The Nanny sounds like the best idea ever. So smart to get that in place before baby comes so that you have that support in place for your family and can focus on Regina. The big girls will be comfortable with the Nanny and their lives will feel more stable despite everything going on. It will be a whirlwind, but you just take it day by day, it sounds like you are doing an amazing job at that already! Praying for you and your family! Thanks for being so open about this journey!
    -Elise (Mom of five)

    1. Post author

      Thank you so much, Elise!! Can’t wait to join you with five children!

  5. Julia Harrell

    Continuing to pray for you, Scott, and baby Regina! You are a beautiful mother and Regina is blessed to be yours. My BFF is a speech path who specializes in feeding/swallowing, especially with breastfeeding issues and has lots of experience with special needs babies (and she’s almost done with her IBCLC). If you want to email with her about nursing stuff, let me know. I know she’d be happy to talk to you!

  6. Rachel A. Hanson

    Every time I read your posts I am just amazed at your strength! Thank you for your incredible example.

    Also, I am right there with you on the pumping (despite working outside my home and doing it all the time, haha). But I was recently in the position of having to buy a new pump (my Medela was dying a slow and painful death) and I got a Bellema pump. It’s a nice (and affordable) pump that has definitely improved the experience.

    1. Post author

      Oh awesome, thank you! I probably should ask for pump recs. I need to get on the websites that my insurance company gave me and choose one in case she comes early.

  7. Sara

    Once again, your strength is breathtaking. I know God has great plans for sweet Regina and will reward you and Scott for your steadfast faith. We are constantly praying for you all. We aren’t as close (location) as we’d like to be but if you need help, PLEASE ask! We will help in any way we can!

  8. Kristen

    Oh Sylvia, I so wish I lived closer to help watch your sweet girls. You, your family, and sweet Regina are all in my thoughts and prayers.

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