During the months leading up to Cora's open heart surgery (OHS), I spent a great deal of time looking for testimonials of other parents' experiences. Of course, I could find information all over the internet about the details of her heart defect and the actual surgery, but what I really wanted were thoughts, reflections, and advice from other parents who had been there.
My Personal Suggestions
Read and ask questions. Read about the details of the defect, what the repair entails, what the possible complications are. The internet is a vast resource. Your cardiologist will also be able to provide information to you. Talk to your surgeon about what to expect during and after the surgery. Discuss the risks and the complications.
Follow blogs. Some of the blogs I've read give play-by-play summaries of their experiences and others give after-the-fact details. Either way, it's good to hear other parents' perspectives, from the "easy" cases with no complications to the ones that had some hurdles along the way.
Get support from those who've been there. Connect with other families who have been through OHS through blogs, online forums or social media. You can find a wealth of contact information here.
Look at post-op pictures. They're hard to see, but looking at pictures of other little ones is very helpful, since you'll know what to expect when you get to first see your baby post-surgery. Read about what tubes, wires, medications will be used so that you know what to expect. You'll find most of these on other family's blogs.
Talk to your family and friends about the surgery. If you are comfortable with sharing, start a blog or post about the surgery on social media. Let your friends and family know what's happening. Although you may feel alone in your experience, it can be wonderful to have the support of many people thinking or praying for your child. Having your own blog or a CaringBridge page can be a good way to keep family and friends updated on the day of surgery and afterward. That way you don't have to worry about providing verbal updates during a very busy time.
And if you are a private person and don't wish to share publicly, then do what makes you most comfortable. Letting loved ones know about your boundaries about sharing online and on social media may help avoid upset feelings.
If you want to have friends and family with you at the hospital, or at home to help run your home or care for other children, prepare for this in advance. It's OK to ask. In fact, many of your friends and family will be happy that you did.
Prepare for the hospital stay:
Milk: If you are pumping for your baby, keep up with it in the hospital. Bring a small cooler to the hospital. After Cora's surgery we often found that the nurses couldn't always get her milk to us right when we needed it. Especially if there was a shift change going on. So keeping a couple of extra bottles of milk (or even your favorite formula) on hand can make it way easier to feed your baby at the right times. Also, bringing your own bottle warmer can make feeding much quicker and easier. You have to rely less on the nurses. They'll probably appreciate it.
Prior to surgery, find out if there is a pump available to you during post-op and a pumping room on the surgery day. Ask where you can store your milk. This may change from surgery day to the ICU to the main floor, so find out the details in advance.
Food: If you are pumping or nursing, many hospitals will offer nursing mother's food trays at no cost to you. Take advantage of this. That said, it can be great to have non-hospital food to eat, for you and for your partner/other family members at the hospital. If you live in the vicinity of the hospital, arrange for friends and family to bring food to you. We signed up for a Meal Train online that allowed people to sign up to bring us dinners during the post-op period. When Cora was discharged we updated the site asking friends to deliver to our house. It was wonderful to have home-cooked meals and brief visits with people we loved during her recovery.
Bring: For you: Your computer, cell-phone, phone charger, a notebook and pen, book to read, comfy clothing for sleep and day-time, toiletries, a water bottle, snacks and some cash. For baby: Favorite toys, blankets and books for the post-op period. Leg warmers can add personality and warmth to a baby still covered in tubes and tape. Bring a favorite photo of your baby, so the staff can see what your child looks like not covered in tubes. And of course, bring loved ones for support.
If you're not local: Ask about your local Ronald McDonald House or if there is a place to stay while your child is in the hospital. Many parents swear by having a "home" away from the hospital. I didn't leave the hospital myself. Most hospitals will provide you with a cot and some have a parents' room when your child is in the ICU. Perhaps I would have slept better in my own bed, but it's hard to say. I didn't get much sleep in the days prior, during or after the surgery. Hopefully you'll fare better that I did in the sleep department.
Trust your Instincts. You know your baby best, so speak up if you feel that something's not right during recovery, whether it's about controlling pain or noticing out of the ordinary behavior. Since Cora's pain meds were discontinued less than 48 hours post surgery and she seemed to be in quite a bit of pain, we took it upon ourselves to keep track of all her pain medication doses. And we'd page the nurses when her meds were due again. Definitely speak up if something feels wrong to you.
Rest. If you can, try and rest. Sleep while your baby sleeps, especially in the hours immediately after surgery (If you can). Take shifts by the bedside so you can step away here and there, and if you're comfortable with it, get out for a walk or a meal while a trusted friend or family member sits with your baby.
Reprinted with permission. Originally published: http://ourcorabean.blogspot.com/p/preparing-for-your-babys-open-heart.html. <---Check out more blogs on heart surgery and Down syndrome.