Heart Baby - Things I've Learned

Things I've learned from our surgery and hospital experiences with a young heart baby...

- It doesn't help to blame yourself.

- Be realistic. Neither pessimism or blind optimism helps.

- Read up, ask questions, be informed. But don't go overboard and don't diagnose with Dr. Google.

- Look up some photos of post-op heart babies in ICU. It's best to be prepared because it can be hugely overwhelming to walk into ICU and see your tiny bubba lying there so still, on a ventilator with lines and drains and wires all over them.

- Familiarise yourself with the medical jargon.

- Find out what support is available (eg. the Patient Transport Assistance Scheme). Usually the hospital will be able to give you info on what assistance is available to you.

- Get a display folder to keep paperwork in.

- Have a notebook that you can jot down questions and information. It's so easy to forget things!

- If at all possible, don't do it alone. It gets very overwhelming, especially if you have to travel away from home to an unfamiliar city. It would have been so much better if I'd had someone with me for all the appointments and hospital stays.

- It is possible to breastfeed a heart baby (maybe fully, maybe with EBM, maybe with a calorie supplement, maybe with formula supplements... depending on baby's condition). Get in contact with the Australian Breastfeeding Association or others who have been in similar circumstances.

- You may come across the odd doctor or paediatrician who's very anti-breastfeeding. Try not to let them get to you and find another doctor if possible. Listen to the doctors who are supportive. (I had lots of health professionals who were supportive. Once I knew B was okay I cancelled our appointments with the paed-who-thought-he-was-God).

- See a lactation consultant to make sure baby's feeding optimally.

- Poly-Joule mixes easier with fresh, warm expressed breastmilk. Then sit it in the fridge for at least an hour or so before use.

- Use your smartphone to set alarms for meds or buy a specific medicine alarm (some of them are really cheap).

- If you live outside the metropolitan area, check with your local pharmacy to see how long it will take to get baby's regular meds and supplements in.

- If you know something's not right or it seems like the docs have the wrong info, keep telling someone until you're listened to.

- Print out a map of the hospital if you're not already familiar with the place. Find out where the waiting areas, parenting rooms, and cafes are. Look into nearby accommodation (if you don't live nearby) as well as which shops, parks and transport are close by.

- Think about if you'll be staying in hospital with baby or elsewhere. Where will you stay while baby's post-op in ICU? (I could only room-in with B once he was transferred to the cardiac ward about 24 hours post-op. Many babes stay in ICU longer than that.)

- Find out what the hospital provides... nappies, dummies, meals, formula?

- Pack enough clothing so that you've still got clean stuff even when baby's puked all over you several times during the day and spat meds out, dripped blood from tests etc. Consider washing facilities and clothing drying times. It's not so much of an issue if you're close to home but don't under pack if you're travelling interstate!

- Keep in mind that the wards are usually quite warm (babies only wear nappies for several days post-op) so pack appropriate clothing for that as well as the outside weather.

- Pack tissues. There were some tough days when I really needed them!

- Leave a bit of luggage space so you've got room for paperwork and meds when you go home.

- If you usually put baby in sleeping or swaddle bags make sure the bags have a 2 way zip so that when baby is able to wear them post-op the monitoring wires can be hooked up through the bottom of the zipper. (Put baby into the sleeping bag before attaching the wires).

- Pack a few pens... they always seem to go missing in hospitals.

- It's a good idea to take some snacks and a bottle of water. Don't forget to take any meds or supplements of your own and consider food options if you have any particular dietary requirements. Pack your favourite toiletry items but it's not the best time to try new strongly scented products - baby will likely find comfort in your familiar scent post-op.

- Pack a couple of baby's favourite toys and anything that may be of comfort post-op. I had a particular playlist that I put on my phone, music that I'd been playing a lot for B in the weeks before. I also took his massage oil as I've given him regular massages since birth and he finds it soothing (in the first couple of days post-op, massaging was often the only thing that comforted him when he was so hungry but on fluid restrictions). It's also handy to pack baby nail clippers so they don't end up scratching themselves.

- I printed and laminated family photos to take as well as drawings by the other kids. Post-op, a photo of his brothers propped up in his hospital cot would cheer B up and amuse him for a while.

- Consider what you'll do while baby is in surgery. It's a very long wait and the hours drag by. Catch up with friends, go see a movie, or do some shopping if you feel up to it. If you'd prefer to stay at or close to the hospital, make sure you've got a book or laptop/smartphone to keep you occupied.

- Love my smartphone. Not only could I keep in contact with friends and family but I could also use it to surf the net, record info, play games, take photos, listen to music and read ebooks.

- If you are breastfeeding don't forget to express while baby is in surgery, at least as often as baby normally feeds. Talk to the post-op ward or ICU about storing EBM. It will take at least a day or two, maybe more before baby is allowed to (or interested in) breastfeed post-op so keep expressing regularly, especially overnight. B continued to have some EBM via a syringe for a while. Be prepared for baby to have some difficulty with feeding for a while, particularly while the drains and pacing wires are still in place (they can be uncomfortable for baby). Ask to see a lactation consultant if you're concerned about breastfeeding progress.

- Even if baby doesn't normally take one, a dummy may provide some much needed comfort in the early days after surgery, especially for a breastfed baby who isn't allowed unrestricted breastfeeds yet.

- Learn how the sats monitors, BP cuff etc are hooked up to baby and what the different monitors are for. (The nurses don't mind giving a run down on what they're doing each time they do obs and, in my experience, most give explanations without being asked). It's handy know the basic things so, if necessary, you can hook baby up yourself after a feed/cuddle/weigh as it can get pretty busy on the ward especially when another child has had a medical emergency and almost all the nurses are attending that.

- Try not to panic if one of baby's monitors goes off. If baby looks okay and a cavalcade of doctors and nurses doesn't suddenly fill the room, then chances are it's nothing serious.

- Every nurse has a different attitude towards obs. Some are really strict and will wake baby up to do them, some are very relaxed and will let you buzz them once baby's woken and do the obs then.

- Try and keep track of when baby's meds, obs or various procedures are due (ask the new nurse at each shift change as they'll have just been updated). You'll then be able to buzz your nurse before baby falls asleep. (Soooo many times B finally fell asleep only to have a nurse come by 10 minutes later for meds or obs!).

- Don't feel bad if you can't remember everyone's names.

- It's easier to find a vein for taking blood when baby's had a recent feed.

- If doing pre- and post-feed weighs and recording feed times and durations, do it yourself and then write the info down (even on a paper towel) and then leave it on the desk or tray table so the nurse can record the info next time they come by. Same for nappies if they're weighing them - record nappy change time and leave the bagged nappy next to the info. This way you don't have to buzz the nurse every time. It's also good for overnight - you can record the info and go straight back to sleep without having to wait to fill the nurse in on every little detail.

- Do as much for your baby as you feel comfortable doing but know when you need to step back. I couldn't bear to hold or be next to B while they catheterised him for nasal and urine samples - I was crying as much as he was!

- Ask for help when you need it. As a mum of 4, I've changed my fair share of nappies but changing a dirty nappy on a post-op baby who has tubes and lines all over him is something else altogether. It took maybe 2-3 days before I could do it solo. Also, I'm a fairly experienced breastfeeder but settling down to feed a post-op baby tangled in all the monitoring wires, lines and drains is tricky!

- It's okay to leave baby and go and grab a cuppa. It's also okay if you don't. Personally, I couldn't bring myself to be apart from B as I was on my own there with him with no one else who would be familiar to him. The nurses often seemed busy with babies whose parents weren't able to stay with them and I hated to think of B crying for extended periods if I wasn't there.

- If you don't want to leave baby, find out when baby is well enough to go off the ward and go for a short walk together.

- Make the most of the hospital volunteers. They'll keep an eye on baby while you have a cuppa, finish your meal or have a power nap.

- Nap when baby does during the day. Close the door and curtains overnight to help cut out some of the noise and light.

- It's totally normal to feel completely overwhelmed at times; maybe perfectly fine and coping one minute and falling apart the next. In hospital a day can feel like a week and circumstances can change quickly. Ask to speak to the social worker if you need to. Find someone who's happy to listen to you debrief, even a friend or family member over the phone (or even just write/type it all out)

- Sucrose (sugar water) may help to keep baby calmer during painful procedures. Ask if it's not offered.

- Immediately prior to having a heel prick done, firmly massage a very warm, wet cloth against baby's heel. This helps to get the blood flowing and hopefully not so much squeezing will be required (squeezing the heel may affect the results and leave baby sore and upset). If it seems to be difficult getting enough blood from a heel prick, ask if the ward doctor can take it via the back of baby's hand instead... sometimes it's just quicker and easier.

- For a few weeks post-op, the hiccups would make B cry. Coughing would make him cry. Sneezing would make him cry. Crying would make him cry. It all hurt his sternum. He hated Panadol so even the pain relief would make him cry.

- Baby won't be able to be picked up and held under the armpits for a good 6 weeks or so. Consider how you'll go travelling with baby if you have to fly home. It's definitely easier if you've got someone else to assist you.

- Consider post-op accommodation. We were told that the average hospital stay after an uncomplicated VSD surgery is 7-10 days. Despite a couple of little post-op bumps in the road to recovery, B was discharged on day 5. We had to stick around until a post-op check on day 8 but weren't allowed to fly until day 10. With the help of the hospital we were lucky enough to get a room at Ronald McDonald House.

- Meds are likely for at least a few weeks post-op.

- Scarring. Pre-surgery, looking at photos of little heart babies with a great big scar down their chest was enough to reduce me to tears. Post-surgery it doesn't seem so bad. Yes there's a big scar - which they say will grow with him but will also fade a lot in time - but I don't see it as something 'bad', as something 'wrong'. I see it representing his heart being healed, fixed. Plus his brothers seem to think it's pretty cool, and I'm sure B will think the same when he's older. That's his main scar. He also has half a dozen small scar 'spots' just below it from where the drains and pacing wires were stitched in place. He has another small scar on his neck where the central line was placed; and another couple of barely visible scars on his hands/feet from the peripheral lines.