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.
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.
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.
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.
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.
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.
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!
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!
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?