After having shared our experience of the Special Care Baby Unit (SCBU) in my last post, I thought that in this post I would give our top tips for surviving a SCBU stint.
1) Get all the support you can. Ask your partner, parents, extended family and friends to come in and visit, bringing anything you or the baby need in addition to offering emotional succour. In common with many, our unit had a ‘grandparents and siblings only’ rule for visitors. It’s for infection control purposes, so you can understand that. Bless ‘em, my parents came every day bar two out of nineteen. Every day they would call and ask if we needed anything. Our unit asked that you provide your own nappies and cotton wool balls, so getting top-ups of those was a perfect grandparent task. It was so good to see my parents each day. Richard and I really appreciated them having made the effort, and Rosa seemed to enjoy their company too. Randomly, they would bring us nice desserts sometimes, which was a small gesture but meant a lot to us, especially after days and days of hospital food. As for the ‘grandparents and siblings only’ rule, in the event that parents of a poorly baby did not have living or involved parents themselves, it was possible to negotiate and nominate someone else for those daily visitation privileges.
2) Get out of SCBU sometimes. Although we wanted to be with Rosa 24/7 when she was in hospital, the Special Care Unit was small and overwhelming. At times when it became claustrophobic and oppressive, Richard and I would escape for an hour or two. This could be a trip to the chemist’s to buy something Rosa needed, or a visit to our home, or lunch or dinner at a nearby restaurant. It was wonderful to get out and get back to the normal world just for a short while, no matter what the nature of that time away was. There was also a room with a TV and tea/coffee-making facilities attached to the unit, which we would go to for a drink and some time out at least once a day. We would return to Rosa feeling refreshed and able to cope with the intensity of the unit once more. And in the words of one of the nurses, “You might as well make use of the best babysitters you’ll ever have!”.
3) Be assertive. As your baby’s parents you have choices when it comes to medical treatment. You do not have to passively accept what is suggested. When the doctors wanted to perform a lumbar puncture on Rosa, but said that the results would not have any effect on their course of action at that point, we declined the procedure. Why inflict that on her when it wouldn’t affect what they were going to do? Also, when the ward manager of the post-natal ward wanted to discharge me after 10 days, Richard told her I wasn’t leaving as we didn’t know if our baby was getting better or not. If, as I was, the new mum is feeling too weak to stand up for herself then she needs to find someone who can do it for her. If not a partner then another family member or a friend.
4) Resist crazy feeding. When Rosa came out of SCBU, and for the entire duration of her stay there, our feeding regimen was completely bonkers. Every 3 hours or so, I would attempt to get her to feed on the boob, followed by feeding her my expressed breast milk by bottle, then a formula top-up. Then I would express breast milk for 40 mins. This process, punctuated by a nappy change and winding would take me 1.5 – 2 hours. I have really mixed feelings about what happened with regard to feeding in SCBU. Rosa being given bottles of formula by the nurses in the first few days is the likely cause of her not being great at breastfeeding. On the other hand, 2 of the nurses suggested nipple shields as a means of getting Rosa to latch on to the breast. This worked and although we are still using them 8 months later, if it hadn’t have been for that advice Rosa would not have been breastfed. However, I was staggered to learn months after discharge that there is an Infant Feeding Coordinator at the hospital whose role it is to promote breastfeeding. In 3 weeks there, we did not see or even hear mention of her! I would strongly recommend that any mother with a baby in SCBU who is determined to breastfeed gets expert advice immediately if she is having problems. And by expert advice I mean either from someone like an infant feeding coordinator within the hospital, or from someone from the outside, like a La Leche League or NCT breastfeeding counsellor. Don’t get sucked into the kind of crazy feeding schedule that we did. It is not sustainable and could interfere with establishing breastfeeding. As soon as we left, I stopped this madness and we established a routine where Rosa is breastfed apart from one bottle of formula each day. This has worked for us and although I have never managed to breastfeed exclusively, at least 80% of her daily milk is breast milk and that is pretty damn good given the start we had.
5) Do not get freaked out by doctors. It’s worthwhile pointing out that doctors work by ruling stuff out. For us, this meant that, on one particular awful day in SCBU, Rosa was seen by 3 separate sets of doctors. One set was concerned that she might have an infection in the bone of her elbow, one set thought that she needed a lumbar puncture to determine whether she had a brain infection and another set thought she had a heart murmur. We were distraught. Anyway, we declined the lumbar puncture for the reasons above and the elbow and heart were scanned and no problems found. I think we found it very difficult because the paediatricians at our unit were not great at communicating. I would advise any parent struggling to understand what the doctors are saying to ask the nurses to translate. One thing that we found stressful was that tests were performed on Rosa, but we would not be informed of the results unless we chased them up. We found that the nurses were generally excellent on SCBU and were a great source of useful advice and information.
Having an ill baby is always going to be a very difficult experience for the parents of the child. But hopefully, some of the things which we found helped us through our time in SCBU may be useful in helping other parents to cope too.