Birth and the first couple ...

So. How do you describe the feeling of being a new parent. I once heard it described as having the sun come out but you never knew that it had been hiding. It's the first dawn. Actually, as a new parent, you see a lot of dawns . Noah was a really, really big baby. He was 97th percentile for length and weight. And boy didn't Louisa know about it. After the labor, she developed massive bruising on her abdomen. We think it was due to the contractions with no dilation, and that Noah didn't really have the right muscle tone to actually be delivered naturally.

Once Noah was delivered and was checked out ok, he and I went into the recovery room to give him time while they monitored him, and Louisa stayed in surgery to be patched up. I was so taken with Noah from that first time, but in the recovery room, it was just he and I. I could put my hands into the humidicrib (spell?) and he wrapped his hand around my finger. It is such a generic thing, but it's such a wonderful experience, especially once we were alone and things were settling down. We had a couple of names that we liked, but I wasn't very fussed on Noah. When we were in the recovery room, I ran through the names we had and looked at him, and he really was a Noah. I could go on and on about that time and how special it was, but I need to write other things as well. The next couple of hours are a bit blurry to me, but we went down to Louisa's room (it was a double, but the other bed was empty at the time) and I gave Noah his first bath and a couple of changes. We had a couple of visitors that first night, and once it was late, I had to go home because I wasn't allowed to stay. It was hard to leave, but I didn't go until about 10:30 and was back at 8am the next morning. The next day, Louisa was given a single room with a queen size bed, so I was able to stay for the rest of the time Louisa was in. I'm a bit hazy on those few days, but I remember changing Noah's nappies (I did this for the first couple of weeks because Louisa was so knocked about), washing him, several nights walking around the hospital settling him so Louisa could sleep and rest, him falling asleep on me in the visitors lounge and me falling asleep with him in the visitors lounge.

Finally, the last day came, and we wondered where the instruction manual was, and if they were really just going to let us walk out of the hospital with this little person. I was lucky with my employer. Since Louisa had a lot of difficulty being mobile, I was able to take extended parental leave to stay home for the first 6 weeks. Noah was pretty much a good baby. He didn't sleep the whole night through, but he did sleep for 3 - 4 hours at a time, and once slept for 7 hours which scared us silly when we woke up Since Louisa had a caesarean, she was entitled to a home visit from the child health nurse. She came after we were home a week and said he was ok, but that we should keep an eye on his muscle tone as it seemed low.

The first couple of weeks were hectic, but normal. Louisa was working hard to breast feed, and I spent most of my time looking after Noah and a bit of time fixing up my motorbike to get it back on the road after it had been out of commission for about 3 years. We needed it going so we had two vehicles, and I got it sorted and back on the road after a week or two.

After a couple of weeks, Louisa began to have some trouble breastfeeding. Noah was attaching well, but after a few sucks, would begin crying. This started to get very frustrating, especially at the night feeds. After reading and contacting the nursing mothers (who basically said 'keep on trying to breastfeed'), we decided to try bottle feeding the expressed breast milk (EMB), which seemed to work enough to get some night feeds done and preserve our sanity. We thought there was a flow problem and tried different techniques to work around this. The problem continued though and we went to a community health breast feeding clinic. The lady there was very straight forward and told us we were doing it right, that Noah was having problems and we should bring forward our 6 week Pediatrician check to as soon as possible.

We made our appointment with the Pediatrician we had in hospital, Cath Dawson. Cath was absolutely wonderful. We saw her on a Thursday, and she sent us for some blood tests and told us to come back on the Tuesday. They took a drastic amount of blood from Noah for the tests (even the phlebotomist seemed to think so) and we went back on the Tuesday to see Cath. She was concerned about some of the levels as well as Noah's reflex responses and we were booked into the Royal Children’s Hospital in Brisbane for the Wednesday morning. We were on Robertson ward, where the non-infectious children are treated. We were in hospital for 3 days this stay, during which we had many specialists come to see us including a pediatric neurologist, speech pathologists (who also deal in feeding difficulties), occupational therapists (OTs) and, of course, Cath and her Registrar. During this time, Noah underwent an MRI scan to check for any spinal injuries because of his reflex issues. We also experimented with thickened food to help with the feeding issues. The thickened food seemed to make a difference and Noah began feeding better. Louisa continued to express, so we began exclusively bottle feeding with thickened EBM. We also contacted Louisa's cousin in the UK, who has a daughter with a condition that we knew involved muscular issues. When we had a response, we were able to tell Cath that it was Spinal Muscular Atrophy. Cath ordered blood tests for this as it's a genetic condition, but the results would take about 3 weeks to come through. This was the first time we were told that Noah may have a limited lifespan, and so Louisa and I left hospital facing the possibility that Noah may not live a full life and, based on her cousin in the UK, may be wheelchair bound for life.

We went home and began thinking about what we could do for wheelchair access in our house, and also began looking for flat house blocks, in case we needed to move and build a house that was wheelchair friendly, as ours isn't. We also went back to the hospital to do a Barium-Swallow test, to check what the feeding issue was. We saw immediately that Noah was unable to protect his airway while feeding and that using thickened food was allowing him to feed properly and not choke. Needless to say, we stayed with thickened food.

We also made a conscious decision to not do any reading on SMA until we had a clear diagnosis. On December 15, 2006, the diagnosis came though, Noah had SMA, type 1. This was when we began reading to find out what it was, and what we could expect.