Brett on Noah

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.

Louisa and I had been married almost 8 years before we started trying to fall pregnant. Louisa was 28 at the time and I was 34. We were happy that fertility wise, this wasn't too late, but Louisa could feel 30 approaching as we both wanted to start before she reached that. 

We'd waited for this long for a couple of reasons. We'd previously lived in a townhouse where coughing loud would usually draw a complaint from the Neighbours, so we were pretty sure they wouldn't hesitate to complain constantly about the 'excessive' noise of a baby. Also, we wanted to do more work on our relationship to make sure we were working well togeather. Finally, I was never very paternal, not having many neices or nephews around to practice on, so it took me a while to come around. When I married Louisa, I inherited an instant collection of neices and nephews. Also, one of the major factors that helped me was when Louisa's sister-in-law Liz had our neice Zoe. For some strange reason, Zoe took a real shine to me, and how I felt about her took me a long way to being ready to have our own children.  

Having said all this, we both realized that there would never be a perfect time to start a family. I would never feel completely ready, if we waited to pay off more of the house, we could be waiting quite a while and out relationship would never be perfect. So, towards the end of 2005, we decided it was time to start trying. We'd already been reading books and researching, talking about it a lot, and doing as much homework as we could. At the start of 2006, we took a driving holiday up to Port Douglas and, even though we started trying in December, this was our time to relax and really start trying.

It did the trick.

We've had some debate since about whether Louisa fell pregnant in December 2005, or in January 2006 on our trip, but in February 2006, the little home pregnancy test told us that we had been successful. A scan at the Obstetrician showed us a little Jelly Bean that was our Noah. Of course, we called him Bob while he was still 'on the inside'. If anyone asked if we called it bob coz it was a boy, we told them no, it's short for Kate. (Any Blackadder fans will get that one) We found out later on that Louisa had Placenta Previa where, early on the placenta starts to grow very low in the uterus and possibly over, or very close to, the cervix. This can be a problem because if it stays that way later in the pregnancy, it can cause bleeding, and may necessitate a cesarean delivery. Thankfully, in a later scan, it showed that the placenta had moved up as it had grown, so this was not a problem.

Louisa didn't cope terribly well with being pregnant. Early pregnancy can be described as just a set of symptoms. A desire to vomit, a strange desire for foods she didn't usually eat, being turned off by foods she did usually eat etc. The second trimester was the best. Not a lot of physical discomfort, but a real feeling of being happily pregnant. The third trimester was the worst. Noah was a big baby and made Louisa quite uncomfortable. He moved well in the uterus for most of the pregnancy, jabbing limbs into delicate places and sitting on organs that didn't respond well. Louisa put on a lot of weight, and retained a lot of fluid. Her ankles turned into Cankles (no difference between the calf and the ankle) and she became very swollen. Louisa also started to snore like a chainsaw going through a hardwood log. Some nights I moved to a spare room at the other end of the house (yes ACTUALLY the other end of the house), and still had to close the door to reduce the noise level enough to sleep. She really was in a bad way though, and I really don't mind. I only rib her about it because I'm usually the snorer, but I couldn't hold a candle to her effort.

Towards the end of the pregnancy, Noah's movement slowed down dramatically. He would move at times, but he would spend a lot of time not moving which started to concern us. The obstetrician put it down to the fact that he was so big, and could't move much any more, and we thought that sounded reasonable too. His pulse was good and everything else was ok, so we just kept on going and waiting for him to decide to come out. And kept waiting. And waiting. And waiting. Once Louisa was about 10 days past her due date, it seemed like he needed some coaxing, so just before midnight on Wednesday the 11th October, 2006, we arrived at the Northwest Hospital in Everton Hills so the doctors could see if they could persuade him to get a wriggle on.

We were led into a birthing suite when we arrived, and waited there a while. We were then moved into the waiting lounge as there was a lady coming in who didn't have such a recalcitrant baby. Within the hour, she had arrived, pushed a few times, given birth and had headed off to her room. We were not amused. So we went back in and started on the drips and gels and stuff designed to move the birth along. This didn't really work. Louisa did start to have contractions, and she began to dialate, but nothing more. The doctor decided to break her waters, which in her words was the most painful and horrific thing she had ever gone through. She had words with her mother for not warning her about that. This still didn't help and after about 12-13 hours, the contractions started to become eratic and she had only dialated 2cm. At about 5pm, our obstetrician decided we were going to have to use brute force and so we were whipped upstairs for an emergency cesarean. This went quite well, with no complications, and at around 6:20pm, we had a beautiful big boy Noah, weighing in at 10lb 1oz and 59cm long. I couldn't believe how much I loved him from the first time I saw him.

(to be continued)    

Well, it's been quite a while since I've posted here. More than a year now. Referenced in my previous post about Noah was that sufferers of SMA type 1 do not have long life expectancies. This was true for Noah. We lost him on 3rd April, 2007. He passed away peacefully at home with his family around him. He was 5 months and 22 days old. My intention now is to try and put down as many memories as possible of his time with us, and also to reflect on how we are dealing with this almost a year after it happened.

This is not an easy thing to do, but as we spend more and more time without him, the only thing we have of him is memories and photographs. Part of the healing process is to move on, and as you do, you think less and less of the loved one that you have lost. It's likened to a terrible burn that, at first, is all you can think about due to the terrible pain. As time goes on, the pain fades, and you think about the burn less and less, sometimes only when you knock the injury and then the pain flares up again. The problem is that when all you have left is memories, the less you think about the person, the more you feel them slipping away. You are loosing them all over again in a different way. We are trying to make sure we remember him without the pain, and re-live the joy we felt having him. Part of this is to express those feelings, to document them, just like the photographs we have are not of the pain and difficulty he had, but of the joy and emotions he felt. The expressions on his face, and love for us we saw in his eyes.

This is about us remembering Noah, for ourselves, and for others.

Brett.

Who is Noah and why do I have a category for him? Well, Noah is our son, born on 12/10/2006 in Brisbane, Australia. Here is a photo of the little man. I know, cute as hell, but I am a bit Biased. Noah is also special because we know that he will not be with us for long. He has been diagnosed with Spinal Muscular Atrophy (SMA), type 1. Life expectancy for sufferers is fairly minimal with a median expected life span less than 12 months. As I write this, he is just shy of 3 months old.

For more infomation, you can look at the following two sites. http://www.emedicine.com/neuro/topic631.htm is quite a medically oriented article, and http://www.fsma.org/booklet.shtml is a more general overview from the Families of SMA website. 

One of the reasons I've created this category (and this Blog even) is so that my wife and I can put down our thoughts on this situation and try and share our story with others. It's been quite difficult for both of us so far, and it's not going to get better from here. I will try add some more detail with future entries, but for now I just wanted to introduce Noah and include why this Category exists.