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Excerpt from "Cardiac Kids Parents' Resource Guide and Journal" (abridged version for the Web)
"My son Ian was diagnosed with truncus arteriosus at 1 month old and he had his surgery at 6 weeks old. Ian was in the hospital for 3 weeks.
There will be many procedures your baby may
have to go through to keep him or her stable before surgery and after – IV’s, PIC lines, intubation, ECHOs, etc. Some of those procedures may be too difficult as a parent to watch, and it will be best for you to leave.
The staff may ask you to leave for your best interest, as well as your baby’s. You do have the right to be there and can ask to do so, but use your best judgment and respect theirs.
I stayed for many procedures and am glad I did, but those are also the things that stick in my mind as some difficult memories to deal with. Children’s Hospital Colorado is wonderful about including you in all decisions about your child, as well as seeking your opinion since you know your child best.
So many "what ifs" will be going through your mind before the surgery, and it will feel like a countdown. All I could focus on during that time was on the moment that the surgeon came out from surgery and told us either the good news that things went well, or the unthinkable. My whole life revolved around that moment, and I couldn’t think into the future beyond that time. All you can do during this time is to spend every moment you can telling your baby you love him or her, and holding your child.
It’s good to have a plan for the day of surgery. Do you want people to be with you while your baby is in surgery? I had many people ask me that, and I couldn’t give them an answer since I had never been in that situation before. I ended up having my mother, husband and two friends there with me – that was a huge help to get through the day because they were able to distract me from what was happening in the operating room. However, if you feel that you don’t want anyone around, don’t be afraid to tell people.
Your baby will look drastically different after surgery – he or she will be very swollen and will have all sorts of tubes as well as a huge number of medications. The nurse will be busy monitoring everything and may seem rushed. The first 72 hours is the most critical time, and you will be counting down those hours.
You can help the medical staff by letting them know if you think something is wrong – you know your baby better than anyone else does. Listen to what your baby is telling you by his or her cries, looks, or reactions. My son Ian had a very "worried" look to him about 3 days after surgery and also had a slight tremor. It turned out that he had become addicted to the pain medication in the short time he was on it. The signs were subtle, but I pointed them out to the nurse who figured out the problem. We were able to give him some other medications that helped "wean" him from the pain meds much more gently, without causing him discomfort.
Unfortunately, your baby will be going through some painful procedures. You can’t take that completely away, but you can give your child as much comfort as you can. Stroke your child’s face, hair or back and maybe give your child a leg or foot massage. Also, don’t be afraid to ask for help for pain if you think something is wrong.
The hospital is a place that is not fun to be in, but you can help to make the environment a little brighter. Play music for your baby, and sing or read to him or her. You can also give your child cheerful things to look at. We placed the balloons people had sent us over his crib like a mobile, although you can also bring a mobile in. We had a wonderful nurse who placed his stuffed animals and toys around his oxygen hood for fun, which Ian loved.
Make sure you have something on hand as a stress reliever. I made sure I always had chocolate on hand (it really did help!), and I was fortunate to have a portable DVD player to watch a movie either in his room or in the room I was sleeping in.
If you are nursing and need to pump while you are there, make sure to have reading material on hand and to stick to a schedule so your milk supply stays strong when your baby is ready to nurse again.
Your emotions will run the gamut. The first 2 or 3 days after receiving the news that my baby would need surgery, I could not stop crying. Eventually, I realized that I was not helping my baby this way, so I had to really control my emotions to stay focused. Find the best way for yourself to deal with these emotions and to get through this time, but know that you will be going through every emotion. It may seem strange, but it’s okay to make jokes, too. That can be a good stress reliever. Talk about how you are feeling with friends and family.
Your friends and family can be your greatest support system during this time. My neighborhood did a wonderful thing and brought us a huge care basket that included snacks, books, lotion, puzzles, journals, and lots of quarters. They were also very helpful in taking my older children on outings to keep them occupied. If you are comfortable with it, have your friends and family visit you, although you may have some visitors who end up being more of a burden than a help. Since your job is to be there for your baby, you may need someone to be an advocate for you when a difficult visitor is there. Ask visitors to STAY AWAY IF THEY ARE SICK.
Life will continue to go on outside the hospital, even though it seems that time stands still while you are there. Get done what you can with the limited resources you have (I finished up my taxes on a laptop during Ian’s stay), but give yourself permission to let things go while you are there. If you are staying at the hospital and you have other children, make sure they visit you often, every day or two. Take them out of the hospital setting so that they can have your focused attention. In a way, they have lost a parent during this time, so be aware of the emotions that they may be going through and give them your time and focus as well.
Unless I have a reason to do so, I don’t always tell people what Ian has been through. Most people have never been through anything like this and wouldn’t understand what a life-changing experience it is. I also don’t want people to think of him as "that poor baby" – he needs to be a normal kid, too. However, I am very happy to talk about it when the subject comes up. I am very proud of Ian’s strength, the way he fought and yes – of his scar – because it represents all of that.
When Ian was first admitted to the hospital, I was still able to nurse him; but within a couple of days, he had lost the strength to nurse and began drinking out of a bottle. Pretty soon, that was too hard for him too, so he got his nutrition from an IV. This happens sometimes with babies born with heart defects – they have a hard time nursing because it is a lot of work for them.
It was very important for me to keep my breast milk available for him, with the hope that he would be able to nurse again after surgery when he was stronger. I pumped every 4 hours in one of the pumping rooms in the hospital (including in the middle of the night) for three weeks. There are pumping rooms by the CICU and NICU. I felt like it was the one thing I could do for him at that time and was able to store all of the milk to use later. Fortunately, a few days after Ian had his surgery, he was strong enough to nurse again. We have all heard that breast milk is the best food for babies. But if your baby is having trouble nursing, don't give up! Using a breast pump is a great way to keep up your milk supply and provide this wonderful food for your baby. Also, the nurses can help you and can give you the supplies you need to store milk."