Saturday, May 16, 2009

Coming to Terms with it all

The week or so after her diagnosis was a difficult time. Having to tell everyone. I mean, how do you tell people something like this, especially so long after she was born? I was really worried how people would take it. Especially some of the older generation in our families. I didn't want to say anything until we knew for sure, but then my sister texted me asking how Samara was doing. I didn't know how to reply. Sure, she was doing fine, and I could have just said that, but somehow I felt like it would be lying. So I did something that was pretty mean really. I told her there was possibly a problem, but the drs were doing some tests. Well, next thing I was getting texts from mum, dad, and another of my sisters. I hadn't thought about the fact that I was just getting them all worried that she was dying or something. So I told them what they were thinking. And you know what? They were all great! It's amazing how much credit I wasn't giving them!!

I told all the mums up at the nursery too. It was really good. In a place like that, we were all going through turmoil of some sort with our babies, so the atmosphere was so accepting and supportive. After getting over the initial shock, my friends were all great too. Although, one thing I found really hard was a couple of people that told us if we had enough faith, God would heal her of this! Sorry, but that really hurt. It made it seem that she had this because we didn't have enough faith - ie, that it was our fault. And that it would continue to be our fault as long as she wasn't 'healed'. Sara made the comment 'why? We like her just the way she is!'
Of course, there was the 'Why God?' questions that lurked around the corners of my mind. But I never believed it to be an accident. We live in a fallen world. These things happen. God knew before the beginning of time. It may have been a shock to me, but it never was to Him. And when I think of all the things over the years that had prepared me to be her mother....well, it just gave me a lot of comfort.

Anyway, that's a lot of text with no pictures. I feel in need of another picture of our gorgeous little girl!

Isn't she just adorable? I love how tiny she looks here! This was taken the same day as the other one in the teddy outfit. I kinda miss her being this tiny. I love how she is now too, of course, but there was something just so huggable, and kissable, and warm fuzzy inducing about holding such a tiny little baby!

I can't remember whether I noticed it before or after her diagnosis, but for a while I had noticed her oxygen saturation levels (sats) were dropping (desatting) significantly with every feed. This was when she was still being totally tube-fed. I mentioned it to the drs, who said they would keep an eye on it - but, truth to tell, they didn't. A couple of days after talking to them, she reached the age where they change them from a sats monitor to an apnoea monitor. I was pretty mad really. They said, but she's 35 weeks now - she doesn't need it. They were basing their decision totally on her gestational age, not her condition! I was pretty upset about that. Anyway, this was about the time that I started trying to breastfeed her. I wish I started blogging back then - maybe I'd be able to remember what happened and when, but I am being as accurate as I can. Well, around this time, I noticed that she was really struggling to breathe when I was feeding her. She would get a marked tracheal tug (where her throat was getting a deep hollow) as she tried to breathe for several 'breaths', and then she would gasp, breathe ok for a few seconds, then the cycle would repeat. I tried to tell the staff about this, but they weren't too worried. They said it was all just part of being prem. Thankfully a couple of days into this, the lactation consultant was sitting with me during a feed, and was quite concerned about it. WHY can't dr's learn to listen to mothers???? Anyway, at least this meant some action. We had her put back on the sats monitor for her feeds, and this confirmed that she was desatting to around 45-60% during feeds.

The next day, the ENT specialists came to see her. They said they could see some webbing in her throat. They arranged for her to have investigative surgery a couple of days later. They told us that she may need a tracheotomy. Well, that had me in tears! Mum's friend and her husband (who has a trach due to throat cancer) came to visit and prayed for her. Well, the great news was that when she went into surgery, there was NO SIGN of any webbing!! However, they said she did have mild laryngomalacia (which is basically floppy airways). Apart from that, everything looked fine.Here she is in the 'limosine' ready to go over to the Children's Hospital for her op.

We did have a big scare after the op though. She was in the Intensive Care Nursery (amazing how huge she looked in there after her few weeks growing in Special Care!) after the operation, laying on her tummy. When it came time for a nappy (diaper) change, we turned her over, and her oxygen sats dropped to the 20's! She turned blue, and the nurses came running. They gave her oxygen, but it took a while to come back up. You know that it's time to panic when all the nurses start to panic! And believe me, I did. We discovered that it was simply easier for her to breathe when laying face down (and when she gets a cold, we still put her face down). So she spent the rest of the day wearing her nappies backwards!!

These pictures were taken in NICU after the operation. I love the closeup of her face. It is the first time we saw her without the tube!

A few days after the surgery, Samara had a barium swallow. This is where she was feed formula with barium in it, which was x-rayed as she drank it. This showed that she was aspirating (breathing in) her milk. So this was the major cause of her desats. As a result of this, we went to a combination of thickened expressed breast milk (EBM) and tube feeds. We also fed her with a special needs Habermann bottle, which allowed us to control the flow. Another thing that had shown in the swallow study was that she would take about 30 sucks in a row without pausing. Normal is about 6!

By this stage, the whole Down Syndrome thing had just become a part of our lives. I was over the major sob-sessions (although minor ones still crop up from time to time!) I had decided to become pro-active, and search the net for anything we could do to help her. This is how we found the TNI and Changing Minds protocols I mentioned the other day. They weren't going to be 'miracle cures', but it looked like they would help Samara to have a better life. And, I think so far, that they have helped. She is not as sick as we were warned about, and she is pretty clever too, if I might say so myself LOL.

She had her postnatal hearing test at 36 weeks gestation. This is given to all Australian babies. They didn't have it when my others were little, so it was pretty fascinating. They use a probe taped to the forehead to measure brain activity, as they play sounds through little headphones. I called it her first i-pod. Take a look....Isn't that just so cute?

By this stage, she had reached the magic 1800gm too, so she was moved from the incubator to a cot. This also meant she was able to graduate from sponge baths to the real thing!

I'll leave you with a picture of one of her first baths....

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