We took a trip to Ireland last year, but it was just us. We knew immediately the kids would love it, so this time we brought the kids to Ireland! Day 1 We left the house Monday, August 14th about noon and arrived at Newark International Airport at about 2:30, breezed through security, and sat […]
When Your Baby Needs Heart Surgery
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If you don’t know, Charlie had heart surgery when he was 7 weeks old to repair a VSD, you can read his story here. Today marks 4 years post-surgery. Some of it I remember like it was yesterday and some of it seems like a giant blur that I don’t remember at all.
When you are first told your baby has a congenital heart defect and that your baby needs heart surgery, your entire world will come crashing down. I’m almost certain everyone feels this way because I can’t see how it won’t. After we told people, we heard many times something along the lines of “oh, a VSD is the best congenital heart defect to have”. This hurts. It really hurts. Don’t ever say this to someone. While it may be less complicated than other heart defects, the “best congenital heart defect to have” still required my baby to have his chest cut open and operated on when he weighed less than 10 lbs. Saying something like that makes a mom feel guilty for being sad and scared and worried when there are so many “worse” things that could be wrong. I know these things were meant to be reassuring, but it doesn’t come off that way.
Before Surgery
Depending on the type of congenital heart defect your child has, you may be in the hospital before surgery, you may be at home with medical equipment or everything may be rather normal. For us, things were normal except we knew we had to keep an eye out for blue lips and other warning signs he was in distress.
I suggest making a plan for the day of surgery. Decide if you want people around you or not. It was a long day and there were times I wanted to be alone and times I wanted others around. Don’t worry about hurting other people’s feelings. If you want to be left alone for awhile, let them know.
Read and ask questions
You’ll end up meeting with several doctors. Ask questions and then ask for some good resources for any more you may have. Don’t just google! You’ll wind up reading the worst possible scenarios and that’s not going to help you, just scare you. When you’ve found a good, reliable resource like a medical journal, read about the details of the defect, what the repair entails, what the possible complications are. Talk to your cardiologist and surgeron about what to expect.
Find others
You can find blogs that have shared their stories, like us. It will be good to look at other little ones post-op pictures. Nothing will really prepare you for when you see your own baby with all the wires and tubes, but this will give you a little bit of a preview.
Share
Tell your friends and family what is going on. This is something we didn’t do at all really, but I wish I had. Post it on your facebook and you’ll see all the support that pours in! During that hospital stay, having everyone think and pray for your baby would have been such a blessing. You could even start a blog or just update a facebook page regularly. This would make it much easier on you to keep friends and family updated instead of having to actually talk to people about it and make all those phone calls.
Pumping Moms
If you are breastfeeding or pumping, be sure to keep up with it in the hospital! Ask if there is equipment you can use or if there is a pumping room. Ask where you can store your milk and let the nurses in ICU know that you have milk stored. We had one nurse feed Charlie formula and I wanted to bawl my eyes out because she didn’t know I had pumped for him. Pumping milk for him was one thing that made me feel incredibly strong because it was something I could actually help with in a situation where I felt completely helpless.
Also, many hospitals offer nursing moms meals for free. At our hospital, I was given a $6 voucher for each meal, which was plenty for me. Just ask about this when you’re asking about where to pump and store.
Packing
For you: You may be there a few days, a few weeks or longer. We were in the hospital for 6 days. You’ll want to pack your laptop, tablet, phone, chargers, notebooks, pens, books, pjs, comfy clothes, toiletries, snacks, money, cards, maybe a board game or something else just to fill the time.
For baby: You can bring baby’s favorite toys, blankets, books and ninny. Charlie only took a ninny for about 2 months, but I know it was a big comfort when he was able to get it after surgery. Baby will be mostly naked, but you can probably bring leg warmers for a little fun to brighten them up or just to keep them warm and comforted.
After Surgery
I’m going to squeeze a bit of during surgery in here. Find something to occupy your time during that surgery. I think surgery always takes longer than they estimate, so don’t sit and stare at the clock. We watched movies and played games, though I couldn’t tell you which ones because it was just to keep us busy. We ate a few times and snacked between meals. For Charlie’s VSD repair it was long enough for us to eat breakfast, lunch and almost dinner to put that in food terms. It was a long day and I was grateful for every update we were given from the nurses.
Staying at the Hospital
Many hospitals have a Ronald McDonald House nearby that will allow you to stay there for free or at a very low cost to you. We stayed there the night before Charlie’s surgery, but we were given a room at the hospital to stay in while he was in CICU. We did still keep the room at the RMH in case we needed to get away for a change of scenery from the hospital. Although he didn’t end up staying another night there, we popped over for dinner a couple of nights. To make it feel more like home, I took a nice comforter and we pushed two twin hospital beds together and it worked rather well.
Trust Your Gut
Whether you’ve been a mom for 5 minutes or 5 years, you have those motherly instincts. You know your baby best and if something doesn’t feel right to you, speak up. This might have to do with controlling your baby’s pain or just the fact that they don’t seem like themselves. You are your baby’s advocate!
Follow Instructions
You’ll be sent home with packets and packets of information. They’ll more than likely give this to you before you ever leave the hospital so you can start reading. Read it all. These are your instructions on how to care for your baby after you’re home including: bathing, skin care, stitches, bandaging, their medications and more. You can’t pick your baby up by their arms. This doesn’t seem like a big deal, but think about it: you usually grab them at their underarms, but now you need to scoop them up under their back. Everything is different and you’ll worry about it all. If you have any questions at all, do not hesitate to ask your nurses or doctors!
Follow-Ups
Your baby now has a cardiologist for the rest of their life. That thought alone just sends chills down my spine and makes my eyes tear up. When I think about someone going to see their cardiologist, I think about a man that at least 50, not my tiny baby. We’ll be going to follow-ups for the rest of our life just to make sure things are where they should be. You’ll also be reminded to take care of teeth and visit the dentist often because your dental health is directly correlated to heart health. It’s hard for kids to get that, but brushing your teeth makes an even bigger difference with heart kids.
Take Care of You
I know this is hard, but you need to take care of Mom, too. Sleep while you can, especially if baby is in ICU. Once they come out of ICU, you are not going to want to sleep. I know after he was moved into the regular cardiac room, I just wanted to hover and make sure he was fine. You need to eat (especially if you are pumping) to keep up your strength (and milk supply)! Baby needs you to be healthy, too! If you need to cry, do it. Don’t worry about what anyone else thinks. If you need to talk to someone, find someone to talk to- walk around the unit and you’ll find a bunch of other moms that are also wanting and needing the same thing.
If you’ve been in this situation, do you have any advice for others?
Sarah L says
Thanks for sharing your story. This kind of story always makes ME feel better because I didn’t have to go through it.
tracee says
Good advice whether its a baby or another loved one in surgery. Thanks for the tips.
Correy Smith says
The feeling of having a baby go through surgery especially heart surgery sure is tough. The same goes for my daughter who had to go through surgery for her kidney. We stayed at the child surgical center for a bout 2 weeks and wow, it sure put both my wife all nervous.
Trina O'Boyle says
What great advice for parents going through similar situations. You will help many families!
Sal says
I’ve been scouring the Internet for info. on infant VSD surgery. My 3-month old is scheduled for an OHS soon to fix the hole in her heart. So thankful I stumbled upon your blog! The advice you have here will be useful. And I am so glad to know that your Charlie is doing so well now. I will definitely think of Charlie and all the other success stories as a means of strength for me. Thank you again.
Jessy says
I love your advice about surgery. I am a Mom, your article is very useful for me. Thanks, Christina.
Christina says
You make an excellent point when sharing that people can help themselves by making a plan for the day of surgery. It’s also alright to not worry about hurting others feelings as they deal with the stress on their plates, just like you share.
Maura says
I found your blog today. My son is having his VSD and ASD repaired in two weeks. Thank you for sharing your story.
Stephanie says
Hi my name is Stephanie and me and my husband has been thru all of this with our son Tristen he had HLHS and he was on 4days old when he had surgery i was so scared and cried for alot of the time he was in surgery and we slept but you are right nothing can prepare you to see them after there surgery but he also had to have a feeding tube put in but thats when he went down hill he lived to be a month and one day old he went to heaven the day before Valentine’s day he is now my angel heart baby i miss him more then anything but i know he is whole again but i know what other familes r going thru its rough yes but you get thru it i did alot of praying and that helped me and my husband but nothing prepares you if they go home to heaven i just take things day by day
Christina says
I am so sorry to hear about your loss. I cannot even imagine. You are exactly right though, he is whole again and no longer struggling.
Stephanie Stevenson says
Hi. My baby is 2 and she has ASD, she will have open heart surgery soon. Everything you said about people wanting to tell you that its common is hard to hear. That’s the last thing i want to hear right now. I’m scared and i just want prayers, not oh she’ll be fine, don’t get upset. I think some people jyst don’t know what to say. Thanks for all the advice, very helpful
Hannah says
Thank you for sharing this information. My newborn was diagnosed with Tetralogy of Fallot and we’ve been told so many times “that’s the best CHD to have, easily fixed.” You’re right, it doesn’t ease the shock of the doctors telling you there’s a problem, or the fear you have as they’re being transferred to another hospital hours away when they’re not even 12 hours old, and pain of realizing your little baby needs to have their chest cut open and their little heart fixed. It doesn’t ease the pain and guilt you feel as a mother that you did something wrong, and it doesn’t keep the depression and sadness from lingering. Our daughter is 2 weeks old and will have surgery at 4 months old.
Samantha says
My baby is having open heart surgery in July 🙁 He is my first child and he was just born April 25th.
https://www.gofundme.com/cullen039s-heart-surgery&rcid=r01-155779666416-0b3b4649c4aa4850&pc=ot_co_campmgmt_m
Tanya M Curry says
Thanks for you blog my daughter is waiting for her cardiologist to tell us when her surgery is. So far all we know is where her ASD is located she will need open heart surgery. It’s been very hard on me and her father. We don’t get the best support from our families with her condition. So we slowly cut them off to see if things would change but sadly it hasn’t. I was wondering if you knew of any support groups in Minnesota at all? Thanks
John Gatesby says
You are right, a surgery however minor it may be, but it is being performed on your little child, it is never easy for the parents. I liked your practical advice especially being forthright to your family and friends when you really want to be alone. Also, loved the idea of entertaining yourself while surgery is going on, otherwise that wait turns out to be really torterous
Aubrey Fonda says
I wish I would’ve seen this post before my little went through her surgery. I can say that if you’re a pumping mom, don’t feel like you can’t touch/hold your baby. I didn’t know I could still pick her up post surgery & I dried up. But being in the room with her every day helped her heal more quickly.
God bless anyone who has to go through this. You are strong <3
Marissa Khosh | MamaRissa.com says
Thank you so much for writing this ♥️ I also have a heart baby and have written a few posts about her heart. I just wrote one about preparing for baby’s open heart surgery (https://mamarissa.com/how-to-prepare-for-your-babys-open-heart-surgery/), but as I am reading your post, it reminds me of some aspects I hadn’t thought about in a while. Like when you mentioned pumping. I pumped while my daughter was in CICU (both times) and it was demanding. I was going on little to no sleep and sometimes not enough food. I was so grateful to have the facilities to be able to pump, but it was not easy to do, especially when I was scared to leave her side when her condition was unpredictable.
Also, when you said your little one has a cardiologist for life … That just hit me in a different way than when I’ve thought about it before. It makes me want to cry because I recently got the surprising news that my daughter’s heart is not doing quite as well as expected. She still has some holes remaining that could not be required when the largest one was required. She is still doing really well and from the outside, you would not even know by how healthy she seems. But as you said, people telling you that it’s not that bad is hard to hear. Because for the mom, anything that is wrong with her child’s body is a big deal.
I so appreciate you sharing this. I don’t know why I never read blog posts on this topic while my baby was in the hospital last summer (probably because I was too tired to see straight). But right now I feel like I’m not alone in all those feelings I’ve had and sometimes still have about my heart baby and this whole experience.