How To Survive The Special Care Baby Unit – Part 2

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.

Advertisements

How To Survive The Special Care Baby Unit – Part 1

It has taken me several months to feel like I can write this post.  After Rosa spent 3 weeks in SCBU after birth, with a mystery infection that didn’t respond to the first lot of antibiotics, it felt too raw to write about it for a long time.  However, our little munchkin is seven months old now and has thrived ever since her discharge from hospital so there is enough emotional distance now. I thought it might be of use to other mums and dads with a newborn in SCBU to share our experiences and how we coped.

I won’t lie.  After the euphoria of the birth, the 3 weeks that Rosa was ill in SCBU were the worst experience of our lives. We hadn’t expected that she would be ill and we certainly never thought that she would be in SCBU for 19 days.

Here’s our story:

I developed a temperature during labour, after my waters had broken a few days earlier. We had declined augmentation of labour because I was having contractions and was dilating, and the baby and I were fine when monitored. But the contractions kept stopping. In the end, because of the temperature I did agree to go on the hormone drip and I had IV antibiotics during labour. When Rosa was born she was whisked away by the paediatricians and her blood was tested. The level of a protein which indicates infection, CRP, was abnormally high and she was started on IV antibiotics.  It broke my heart to see my newborn with a cannula in her hand within 2 hours of birth.

Rosa seemed to be doing ok until 2 days later, when we had the scariest day ever.  I had gone over to SCBU from the post-natal ward to feed Rosa at about 6am and then went back to have breakfast and shower at about 7.30am. When I left Rosa she seemed really well and I was feeling optimistic about getting her home soon.  I went back to SCBU at 9am to find that Rosa was no longer in the main nursery.  One of the nurses told me she had been moved into the intensive care room and had a tube in her nose, because she had started vomiting bile.  I was really upset and Richard wasn’t due to arrive for another hour. When the doctors came and did their ward rounds at 10am they spoke to us and said they wanted to perform a lumbar puncture on Rosa to determine whether she had any infection in her brain i.e. meningitis.  We were horrified. They also said that the results of a lumbar puncture would not change their course of action at that stage.  Therefore, we declined the lumbar puncture and asked the doctors to proceed with the next stage of treatment.  This turned out to be IV antibiotics five times a day for 14 days.  After this, it was a waiting game.  Our poor baby had to have a new cannula inserted every couple of days because babies’ blood vessels are so tiny cannulas blow very quickly. It was all very scary, and we found the doctors to be very uncommunicative.  This may have been because she was a bit of a mystery to them.  All the tests performed on her and me came back negative.

Another of the worst times came after 10 days when the post-natal ward wanted to chuck me out. There would have been nowhere else for me to go within the hospital, so I would have to have returned home. For me this was simply not possible. My baby had a severe infection, was on her second lot of IV antibiotics and we didn’t know at that stage if she was getting better. The best thing for her was my breast milk on demand, as the doctors had told me. How could I possibly achieve this, feeding every 3-5 hours in a crazy cycle (more of that in part 2) that took 2 hours, if Rosa was in hospital and I was at home? We live a 10-minute drive from hospital, but that would have been completely unsustainable. Unfortunately, at that point, I wasn’t my usual assertive self.  I had just given birth and my baby was dangerously ill.  I could pretty much only make milk and cry during our period in SCBU.  Thankfully I have an amazing partner who was able to stand up for Rosa and me. The Ward Manager was awful to us when we said that we felt that I couldn’t leave. She said that we were selfish and unreasonable and should be paying £250 per night to stay there. He told the Ward Manager on the post-natal ward that I wasn’t going anywhere and they would have to get security to throw me out.  I would have stayed anywhere in the hospital – a broom cupboard with a blow-up mattress, nurses’ accommodation, anything!  The NHS website says that parents of babies in SCBU should be offered accommodation, so I really do not feel that we were being unreasonable. I’d rather feel like a slightly bad person than a bad mother any day, that’s for sure.  Thankfully, the one room for parents attached to SCBU became available and we were able to stay there for the last week of Rosa’s time in the unit. This was wonderful, as I had been on my own at night in hospital for 2 weeks by this point and some of my loneliest and most vulnerable times were feeding Rosa in the wee hours.

When we were over the accommodation hurdle, things got better. Rosa seemed to be doing well and we just had to get through the 14 days of the second course of antibiotics. Life in SCBU became a routine of feeding, nappy changes and cuddles, interspersed with desperately trying to fit meals, sleep and personal hygiene in!  With Rich in hospital with us for the last week, the situation was a lot brighter.  After what felt like a very long time, we were finally allowed to take Rosa home.  I am very happy to say that although Rosa’s time in SCBU was extraordinarily stressful, she received excellent care and now it seems like it was all a very long time ago.  It did take a few months for me to be able to relax enough to fully enjoy being a mum without worrying constantly though and I’m sure that was a legacy from our time in SCBU.