The Long Hard Road
So the only way was up! The Lactation Consultants were great, coming up to NICU to help us get Daryl to breastfeed. How strange it feels to have some other woman grab your breast and shove it into your newborn’s mouth! – but reassuring to have someone there who knew what they were doing when it felt like we were on a run away train to who-knows-where. It didn’t seem that she was going to be able to do it. We started trying a special bottle and Rob had a wee bit of success, but then a few days later she seemed to get the hang of it. At 17 days old she had her first decent ‘feed’, and it’s been ‘all on’ since then!
One of my earliest really happy times was when, at just over two weeks, one of the nurses came down to the Self Care room I was in to say my daughter was ‘summoning me’!! I shot up to the ‘hot room’ and there she was, crying out that she had a dirty bum! I cried. I had finally heard my baby cry and it was the happiest and saddest moment in my life!
By the time we took her home she was partially breastfed, and I continued to express so that we could top her up through a tube that went through her nose and into her stomach. A week after we got home we stopped using that tube, and on Boxing Day we removed her nasal-gastric tube. We took our first photo of her with a clean face – and that was her daddy’s happiest day (up till then!)
We have struggled to keep weight on her, and also with getting her to settle. When she was three months old we had to admit ourselves to hospital twice to get help, as she wouldn’t let me do anything but sit on the couch with her, or feed her, and even the feeding started to drop off…we knew we were heading for trouble. I almost lost my milk, and had to employ that hated old breast pump again.
In the end she was put on phenobarbitone, an old anti-epileptic which is also a sedative. The change was instant. She started sleeping, and her feeding improved a lot. Once her body got used to the drug, she started paying attention to her toys, reaching out to bang at her windchime and doll. She’d lie on the floor kicking away and making happy croaky noises. The side effects though were that she her eyes were always quite closed and she seemed very tired. Every time we went out, well-meaning people would say ‘Oohh, look at the little darling, sound asleep!’ – when infact she was ‘wide’ awake! Her world was subdued, and that helped her to cope (and us!), and eventually she started playing with toys sitting in specially designed chairs, playing with toys on the floor and we managed to straighten her out enough for her to have tummy time.
By now we knew that she would be diagnosed with Cerebral Palsy, and she also has Microcephaly (small head), as the parts of her brain that should have grown straight after birth were too damaged, so they never grew. She started having partial seizures around five months, which we are still trying to control with a few different drugs. She has Polymorphus Epilepsy, which is very difficult to control. The Paediatric Neurologist confirmed that she has severe damage to over 50% of her brain, including the area where the cortical nerve is, so we believe she has some major vision problems, but it is very difficult to tell what she sees at the moment. We know she does see a little bit though, especially close up.
Having a label has opened many doors, the most important one being the local Cerebral Palsy coffee group, where for the first time I felt normal. Other mothers knew exactly how I felt, and we could lament and joke about our situations and it would all be understood without funny looks or whispers. It also makes it easier when we go out and meet new people. I don’t keep people in suspense, you can tell she’s not ‘normal’ and most people are too uncomfortable to ask why. I’d rather open that door for people so they can ask the questions they want to, so that they can understand our situation, and others like us.