What do we do during and after our 1 y/o daughter's heart surgery?
August 11, 2014 8:37 PM   Subscribe

So....after months of prenatally following our daughter's heart issues and a year of post-birth cardiology visits it was determined that she did in fact need to have surgery to correct her issues and we are trying to keep it together while we wait for her surgery date and wondering what we can expect the day of and days following the surgery to be like and we can/should be doing for her and/or ourselves.

In short, our daughter, who was diagnosed prenatally with Down Syndrome, has a handful of congenital heart defects which include a PDA not closing (Patent ductus arteriosus), VSD (Ventricular septal defect), ASD (Atrial septal defect) and tricuspid valve regurgitation.

The rational part of our brains knows that she will more than likely come out of this surgery better than she goes in, and that the better than 97-98% success rate with 100% survival rate/chance of full recovery statistic sounds great but I think we're beginning to feel the stress of it all start to creep up on us because after all they are going to cut into our baby.

The surgery is a week from now and the surgeon comes recommended and I'm sure he and the whole surgical team knows what they're doing but I feel like we need practical advice and tips on how to deal with it all.

For example, I know it will be hard to keep from being sad on the night before and morning of the surgery so our plan is to be strong for our babycake so she doesn't feel any stress going into the surgery. I believe the surgery is scheduled to last about 5 hours with about an hour of cleanup. We'll be getting hourly updates from the surgical liaison but in the meantime do we just sit around and twiddle our thumbs?

Once she comes out of surgery she'll be taken to the cardiac ICU for hopefully less than a week and then to a regular recovery room for another week or two. She'll be intubated so we're told that even though we can see her in the ICU, for obvious reasons we wouldn't be able to hold her. She will most likely be sedated for a day or two to allow for healing (because she's 1 and she likes to roll around) but what about the rest of the time in the ICU? Do we want to be there alongside her 24/7? Do we (or one of us) sleep at the hospital to comfort her? Will she be fed via IV the whole time or will we be able to feed her ourselves?

What about when she's in the regular recovery room? It will be a shared room with one other patient so I'm assuming that by the time patients get to this stage they are recovering reasonably well? Do we stay there for comfort and try to not to get her agitated or ... what?

One good thing is that I work at the hospital where the surgery will take place so even though I've taken time off from work, in the second or third week I can conceivably go back to work and still be able to visit her many times during the day. The hospital is one of the best in the US (possibly the best depending on who you ask) so we want to believe that everything is going to be alright but damn it if we're still not scared.

We have yet still to meet with the surgeon (we'll meet with him at the end of the week) and I know we can (and will) ask him all these questions but I'm hoping that if someone has been through this with a young child they can provide us with some tips on how to maintain some semblance of control over this event.

Thank you in advance.
posted by eatcake to Health & Fitness (8 answers total) 2 users marked this as a favorite
I'd meet with a Child Life Specialist (sometimes they have one assigned to cardiology, sometimes to infants, etc) so you know your resources in hospital for books, toys, mobiles, music players, etc.

They are familiar with the different stages of recovery and what kinds of activities you and your baby can do at each one. It'd also be nice to know this designated person and location of those resources pre-op so you don't have to start searching when your mind and heart are elsewhere.

Best wishes and take care!
posted by mamabear at 8:47 PM on August 11, 2014 [2 favorites]

Aw, I am so sorry you have to go through this. The experience can be daunting. Be strong. You can get through it and it will eventually be over. I recently had a non-baby relative go through the cardiac ICU. I'll share with you my experience, hoping that it helps.

Patients in the ICU do not look good. It's the hardest part. They are generally intubated and not alert. The area is fussy. You may also find that you do not have a dedicated room in ICU or much room to sit. You may find that there are visiting hours or restricted access, and waiting areas nearby. Your baby sounds so young but it will be important to her and to you and your SO to check in and see her.

After she is out of ICU, things are much more calm, you'll probably have the option to be with her 24/7 in a private or shared room, with a sofa nearby. This is totally normal. Spend as much time with her as you want. I don't know how baby sleeping patterns are but you can let her rest at night, if you want. She will be looked after. She will most likely have a very strict diet the first couple of days, weened off of the IV, into liquids and soft foods, so on and so forth. So you don't have to bring food, but you can bring food for yourself or eat at the cafeteria. And you can help her with her eating.

Let me also suggest if you don't live near the hospital, maybe there's a hotel you can stay in across the street. This helped me out a lot. Sometimes they have classes in the cardiac unit on how to deal with patients post-op. We met a volunteer who went around the ICU telling all the patients that he had survived his cardiac surgery, so let me pass what he said on to you, that the experience at the hospital will end and it's really important to keep your focus on that and be optimistic, and to share that focus and optimism with your significant other and baby. It's a harrowing experience, but everything's going to be okay. Godspeed.
posted by phaedon at 9:00 PM on August 11, 2014 [1 favorite]

The Mommies of Miracles Facebook group has some heart families on there - I think you will find a lot of answers from them.
posted by peanut_mcgillicuty at 9:06 PM on August 11, 2014

This group was started by someone I've known since kindergarten. My friend is the first person listed on the "about us" page. It is based in RI but I know she has contacts in MA and she will help you get in touch with families who have gone through a similar experience. Feel free to send me a message if you would like me to introduce you via email. Also I am guessing the hospital is Boston Children's. If so you are in incredibly good hands.
posted by a22lamia at 9:23 PM on August 11, 2014

Our baby had a PDA surgery at 37 weeks (she was a 30-week premie). She was intubated later for pneumonia too. The good stuff: the scars are thin and light and while they 'grow' with the baby, young skin repairs very quickly and they're just tiny tracemarks now. The difference post-surgery when her heart was working well was amazing, better colour and activity and just overall healthier.

Intubation looks scarier than it is. Talk to the doctors about pain relief management because you will notice your child's distress faster than anyone else, so you know what the options are. If it's a full intubation and the kid keeps trying to rip it out, they may end up putting mittens or even restraints on her. Our tiny baby would repeatedly pull hers out and she hated being restrained, so we opted to have it reinserted and instead spent a lot of time supervising her, redirecting her hands.

She'll be fed by tube while she's intubated. Once she's off they restrict food for a while but pretty soon, she'll be back to regular food. Most places are happy for you to have your own food. If she prefers a certain formula, you will need to bring it.

Different hospitals have policies for pediatric ICU. We were allowed to sleep in our baby's room, although we had to go outside for some proceedures. If you can fit onto the bed, you might prefer to sleep at the foot of the bed or curled up near your baby while your partner watches, which is what we did - she was a co-sleeper, so it calmed her down. Hell on your back though. The other option is to have a chair that leans back and just be next to the bed so you can hold her.

Therapeutic touch means a lot to babies. Stroking her arms and legs, cuddles, hearing your voices - all that will help her. This isn't new agey stuff but actual clinical trials show that babies recover faster with contact and comfort. You will be helping her just by being near her. You might not be able to hold her in the ICU, but almost certainly after you clean your hands and wear scrubs or whatever they require, you can sit next to her and touch her.

Does she have favourites stuffies? blankets? Ask if you can bring linens, pillows and toys in. You might not be allowed to for the ICU, or they may have to go through hospital laundry first or something, but that can help.

If she likes videos and silly games, now is the time to let her watch as much toddler video as she likes, and to have her favourite songs playing. Do something lovely the night before, just the three of you.

I wish in hindsight that we had asked certain friends to stay with us during the surgery, friends who would get us drinks and say good helpful things while we waited or simply be there. Expect to burst into tears or be frozen or panicked, and allow yourself to do that. There's no right way to feel because it is the hardest limbo to be in, waiting for the surgery to be over. We had brought things to do/read, but we just sat frozen every time. I think music on headphones might help or having something like knitting or prayer beads. I wanted to be physically close, so I couldn't leave the surgery waiting room. I remember longing for a hot coffee, something to hold and sip. Bring tissues/wet wipes for crying.

Some places allow parents to go in for the surgery prep part up to when your child is sedated - I made that a playful time for the toddler and she has only happy memories of the hospital. The time she was in pain is a blur for her. Except odd freakouts - mine hates monitors on her foot because she associates them with her foot IV when she was tiny.

Ask for help if you need it - someone to walk your dog or bring you a meal at the hospital so you can spend more time there. People are very unlikely to be able to visit the baby until she's better (and unless she knows them well, having your friends visit her at the ward may not be much fun for her), but they can help you spend more time with her.

Oh and power plugs and chairs. Check if her pediatric ward has a desk or table in the room or use a little laptop cushion/bed table rest. We used to have to juggle access to the one power outlet and take turns at the tiny desk ledge which was super annoying. If I ever had to go back to that ward, I would buy my own damn comfortable chair with a laptop cushion.
posted by viggorlijah at 12:00 AM on August 12, 2014 [7 favorites]

If you do not live near the hospital and are short of hotel money, see if there is a Ronald McDonald House where you can stay. Stay as positive in your thoughts as possible, especially around the baby.
posted by Cranberry at 12:14 AM on August 12, 2014

If it's at all helpful: I had a childhood friend who had surgery for similar heart issues as an infant. (Incidentally, his mother also worked at a top-ranked Massachusetts hospital, possibly the same one).

By the time I knew him (around age 4 or 5) you would never know that he had had any heart problems. Unfortunately I can't tell you that he had a long and happy life, but the motorcycle accident that killed him in his 20's had nothing to do with his congenital heart issues.

The technology on these things has grown by leaps and bounds in the thirty years since my friend had his surgery, so your child has even better odds than my friend, (as long as she doesn't go motorcycling without a helmet in Southeast Asian traffic).
posted by firechicago at 4:28 AM on August 12, 2014

Love is not measured in the number of hours spent in the hospital. Keep this in mind.

Hospitals are stressful and they're no place to work or get rest. Leave often. Your child will need your love and support but she doesn't need it in person while she's under general anesthesia and she doesn't need a vigil in ICU. You expect her to live, this is part of a medical journey that will last your whole lives. Pace yourselves.

I hereby give you permission to leave the hospital during your daughter's surgery. The surgeon has your phone number and will call you. Go someplace with decent food, comfortable chairs, and good wifi and distract yourselves. One time my husband was in surgery I scheduled a counselling appointment for myself during the operation (my doctor happened to practice in the same hospital). It helped so much.

Staying strong and keeping things stress free for the patient is an unrealistic expectation. It is so hard to bottle these things up. I say be sad the night before the surgery and allow this. That way, when you cry the night before anyway you can skip the guilt trip with it.

It's OK to cry around kids. It's OK to be scared. With a verbal child you could explain this, but with a non-verbal child (and likely an active one!) this is tougher. Give your child extra hugs, it's OK to hug her and cry and use the soothing voice to say everyone gets scared but the doctors will take good care of her. Your child will know something is up anyway, might as well be real about it.

Good luck
posted by crazycanuck at 8:25 AM on August 12, 2014

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