By Honor, mother to CDH survivor Audrey.
Audrey was born in June 2021 at the Mater Mother’s Hospital in Brisbane. Audrey was discharged from hospital with a feeding/natrogastric (NG) tube and on oxygen. We asked Honor to describe the experience of bringing home your baby when they require feeding and breathing assistance.
After seven weeks in PICU, we moved to the ward at the Children’s Hospital. In terms of oxygen, the respiratory team prepared us early in the piece after moving to the ward that going home on oxygen was very likely given Audrey’s journey. She was also still on medications for Pulmonary Hypertension when we finally went home, which further solidified the plan to leave her on oxygen until they had weaned her medications.
We had to wait until Audrey was off high-flow oxygen before we could start any oral attempts of feeding/tasting milk, which meant there was no real attempt at oral feeding until she was about 9 weeks old. While she made good progress, she was still mostly NG dependent when we eventually went home.
Our teams had different ideas about how long she would remain in hospital, but ultimately she was medically stable, and we could manage oxygen and an NG at home, so we went home just after 12 weeks.
I was honestly just so happy to finally get my baby out of the hospital that I wasn’t too fussed. I told the pediatrician that I didn’t care if we went home with tubes, I just wanted to get her home and do normal baby things with her so she could feel less sick and start behaving like a normal baby who wasn’t so sick anymore.
There were definitely moments in discharge planning that it all felt very overwhelming, but the hospital teams made everything seamless and had everything organised for us, so the transition home was easy.
Our nurses trained us on how to use the NG pump over several weeks, and helped us learn how to administer all the medication and feeds. I felt very confident with managing the NG tube, as did my partner. We opted not to be signed off for inserting the tube if it came out, as we lived so close to the hospital and coming in to have it put in again wasn’t a big deal for us.
For the oxygen it was more of a reassess as she gets bigger and other things get less complex (for example, the teams didn’t want to wean her oxygen at the same time as focussing on weaning her NG tube). We had oximetry done every 6ish weeks to reassess where her oxygen was at – and she went from 24/7 oxygen, to oxygen just at night, to dropping her oxygen prescription every time we had an appointment which was promising. They did give us a ballpark of 6–12 months when we left the hospital. In reality, for Audrey it was 4 months.
Our speech pathologist and dietician gave us a Tube Exit Plan before we left the hospital, which outlined a plan on what needed to be achieved before the NG tube would come out, and a ballpark of 6–9 months of expected duration. We attended the Feeding Clinic every 4–6 weeks, and once Audrey started becoming more comfortable with a bottle (bringing it to her mouth, not necessarily drinking from it), and taking some solids, she was started on a Rapid Tube Wean at about 6 months old. Her NG tube was removed at the end of this wean and Audrey is now totally orally fed.
We needed oxygen canisters and tubing which the hospital helped us organise through the Medical Subsidy Scheme, and these were delivered to our home. We also needed a lot of syringes/bottles/feeding equipment. All of the disposable stuff, the hospital provided. They also provided tapes, and oxygen tubing, dressings for Audrey’s face, scissors to cut the dressings, spare NG tubes and syringes.
The hospital also organised a loan of an NG feeding pump, which we returned once she no longer needed it. All of the NG-related stuff we took home once we were discharged, and picked up new supplies every two months from the hospital (dressings/syringes etc.). The only thing we didn’t get from the hospital related to the NG was bottles for the pump (any narrow neck bottle will do), NG feeding lines (you will get all the details based on which state you’re in, we ordered these every 8 weeks from Bright Sky and just paid $16.50 for shipping each time for an 8-week supply), and something to attach the pump to. In hospital the pump sits on a pole, but you don’t have these at home. We bought a $10 walking stick from Kmart with 4 little legs, which we found so helpful – we could move it around the house and meant the pump was very portable.
All NG tube related stuff was supplied free of charge through our hospital.
The oxygen equipment was covered under the Medical Aid Subsidy Scheme – we had to apply for the Carer Allowance through Centrelink, which provided Audrey with a health care card. This health care card number was provided to the oxygen company, and covered all of her oxygen-related costs.
When the oxygen was 24/7 it definitely meant we had to plan – it is quite a heavy cylinder if you’re holding it so you need to plan to go everywhere with the pram. We had a really good pram with a side carriage that worked really well for transporting the oxygen, and also allowed us to carry plenty of feeding supplies.
We still went out and had plenty of cuddles while on oxygen during the day, but our quality of life was much improved once oxygen was just at night – Audrey could start swimming lessons once she was off oxygen during the day! Oxygen also means going away is difficult as you can only access a certain amount of portable oxygen each month, however with enough planning you can make it work.
The NG tube doesn’t really limit your activities unless a feed is actively running, Audrey still went swimming and went to baby sensory classes with her NG tube. She definitely became more active once it was removed though.
There is a lot of planning, but you get used to it. The hardest part is being out and about and having people point and stare, or come up and ask “What’s wrong with her?” You do get used to it too, but the general sense that people feel so entitled to know what’s “wrong” with your baby is really full-on at first. I am all for educating people and raising awareness, but the negatively geared questions and assuming the worst and constantly being probed by strangers when you’re trying to enjoy a coffee with your family is something you should prepare for.
Some families opt to be trained to reinsert NGs, but we decided not to, as Audrey was very distressed by the process and we lived close enough to the hospital that it would not be unsafe for us to drive in if we needed to. If there were any feeding issues we would contact our Feeding Team, but if we were worried about something to do with an acute illness or sickness affecting feeding, our GP or ED if necessary. We luckily didn’t have any issues with the oxygen, but the company provided their contact details should we need them.
Having an NG meant Audrey was being fed totally by the tube and never really got to build oral skills for feeding. We worked with her speech pathologist and dietician very closely to help re-introduce oral feeding, but there was always a limit to what we could do with the tube in place as Audrey was not hungry and had no drive to suck. During her tube wean she started to associate hunger and drinking milk as the cure for it, which helped her overcome her aversion to the bottle/breast feeding. I don’t think Audrey really had any developmental delays; for a while yes her oral feeding was behind in terms of bottles, but she started solids around 4 months and has always been quite ahead for her age with regards to eating solids.
Ask as many questions as you need to go feel comfortable, and don’t feel like you’re being rushed out of the hospital. If you aren’t comfortable, ask for more time/training. Try to share the load, waking up every 3 hours to hang a feed, then turn off the pump 45 minutes later gets really old very quickly. Make sure you both know how to use the pump well and administer medications in case one of you gets sick.
Make sure both of you know how to use the oxygen equipment – the hospital and home oxygen are slightly different in our experience.
If you have pets inside try to ensure they aren’t around during feed times or when the oxygen tubing is out, in case they pull it over (our big German shepherd knocked over our feed pump many times and milk was everywhere).
Reach out to someone who understands – the online group is such a great community and has so many people who know exactly what you’re going through. Sometimes asking them for hacks (like buying a walking stick to attach the feeding pump to) or just having a vent about your frustrations can be really helpful.
Overall, it can seem overwhelming but it is surprising just how quickly you get used to it. There is no feeling like having your baby home with you. You’ll soon forget they have the extra accessories and will just be so taken by life outside the hospital.
Your experience may encourage other families to fundraise, donate, or help to navigate their own CDH journey. You’re invited to email us with your story.
