Thursday, May 14, 2009

...chapter 2 of the saga

The night Samara was born, I started coughing something awful. I was taken down to x-ray, and they found that my right lung had collapsed. The pain in my scar was horrific every time I had a coughing fit, but the physio's said I had to work at coughing it all up. The only thing that made me obey them, was I needed to get well enough to visit my little girl again! Finally, 2 long, long days later I got back to the NICU. By now, she was off the ventilator, and on CPAP, as shown in this picture.

You know, I hated being pregnant. The pain in my joints, the tiredness, the lack of sleep, being stuck within a 10 min radius of the hospital, etc. I just wanted it all over. But, you know, seeing her laying there so tiny and covered in monitors, tubes and machines, was pretty heart-wrenching. I felt so guilty for wanting it all over, and just wished so much that I could put her back where she belonged! Yet at the same time, I was totally besotted with this entire person that was laying there in this tiny little body. It was pretty fascinating really!

One thing they do with the little preemies, is insert their first IV line through the umbilical cord. Until this was removed at about 7 days, we wouldn't be allowed to hold her. But when she was 4 days old, I was standing next to her isolette crying. One of the nurses came over and said I looked like I needed a hug. She bundled her up in a ton of blankets, taking care to protect her UV line, and gave her to me to cuddle! What an awesome experience! But in all honesty, physically, it felt like I was just holding an empty bundle of blankets! She was lost in amongst them :)

Because Bryanna and Mahalia were born at 35 weeks, we had some experience of the various monitors, and tube feeding. For this I really am thankful - it made the whole experience a lot easier. Other mums were jumping every time an alarm went off - but I knew how to tell whether the alarms were false or not, which probably saved me from several heart attacks!

In the NICU, Samara earned herself the nickname of Feisty. She knew what she wanted, and how she wanted it. A trait that she still has! They had little pillows and supports that they would put around her to hold her in various positions that were to help with her development. Well, she was having none of that. She would literally re-arrange everything until she was happy, then plant her face against the matteress before going to sleep! Here she is giving Christiana a demonstration of how it's done!

After 27 hours on the ventilator, 4 days on CPAP and 3 days on increased oxygen in the isolette, Samara was finally breathing well at room levels, and was transferred to the Special Care Nursery. Not bad for only 8 days old, and 32+2 weeks corrected.

Here she is having a feed and a cuddle with dad in the NICU just after her CPAP came off. It was really nice being able to see her face (well, most of it!).

Once we got through to Special Care, we were asked to take place in the TIC trial they were conducting as part of the neo-natal research they do there. The trial involved babies who were born before 32 weeks, with no other known medical issues. It was to see whether babies did better when transferred from isolette to cot at 1800gm (the current standard) or earlier at 1600gm. The theory being that they may do better with more parental contact that comes with being in a cot. We agreed to take part, partially in the hopes of getting more cuddles!! At 1600gm a computer would randomly pick which part of the study she would be in. At 3 1/2 weeks she reached that first goal, as shown here. Unfortunately she wasn't selected to come out of her isolette yet:( But that's ok. The biggest disappointment was she was going to be too big for her first outfit by the time she did come out. So we dressed her in it anyway, for some photos and a cuddle with dad. It is a teddy bears onesie from Pumpkin Patch. It now belongs to her doll!

During those first few weeks, I was not without problems of my own. Firstly, at 2 weeks post-partum, I developed a kidney infection. It took a couple of rounds of antibiotics to clear that up. Then, a day or two after these photos were taken, I saw the GP again as I was still in a lot of pain. A scan was scheduled for the afternoon of 20 October.

The day of the scan I was particularly sore, so Michael took the day off work. We had already had a pretty hard week. The inteferring social worker at the hospital had managed to get us kicked out of Ronald MacDonald House because we didn't have a fixed address on the Sunshine Coast any more. I was really mad, cos I had been up front with them about it the whole time. We had even offered to pay our own way, if Nambour Hospital no longer felt it was their responsibility. But the social worker was treating us like we were trying to rip off the system to get free rental accomodation. Now, if you have ever tried to rent a house in Brisbane before, you will know it is not easy. Add to that the fact that we had 6 kids living with us, and it is darn near impossible. So here we were, with a couple of days to move out, and nowhere to move to. We had already arranged to borrow a friends house for a week while she was away, because Alicia was coming over from New Zealand, so we all wanted to be together. And, so it was, that this is where we were staying when the scan date arrived.

Anyway, I digress. Because I was in so much pain, Michael left me at our friends' place with the girls, while he went to the hospital to visit Samara and take her in some breastmilk that I had expressed. In the meantime I had a sleep.

At 1.30 he got back (1-3pm is quiet time, and no visitors allowed). He came and woke me up. I wasn't impressed. I wasn't sore when I was asleep, and my scan wasn't until 4.30! Anyway, he said we had to talk. The drs had told him they wanted to speak to us. You know, looking back, it seems really dumb. But my first thought was 'do they think we aren't doing a good job parenting Samara? Are we not there enough?' - really dumb - I was there nearly all day every day! But it goes to show that I was totally unprepared for what came next.

He said that they think she has Down Syndrome! Wow. That was totally unexpected. She was doing so well. She was lifting her head up when laying face down in the isolette. Aren't DS babies supposed to have weak muscles? They must have it wrong. Surely we would have seen it. She doesn't look it. Maybe they mixed us up with someone else. Maybe there was a mistake and she was swapped with someone else - yeah, that will be it. After all, I didn't see her for 2 days in the beginning, and she changed a lot in those 2 days, it's possible that all 3 name labels came off, and she accidentally got moved to someone elses isolette. Isn't it?? Where do they get off saying that about MY baby anyway? NOOOOOOO! Far out, I am still crying, writing about this nearly 7 months later!

As much as I HATE to admit it, I even thought for a very fleeting moment that maybe it would have been better if I had lost her right back at the start of my pregnancy when I had that bleed. How awful is that?! After 4 weeks of getting to know my perfect little baby, I was being told that baby wasn't mine after all. I was being given this defective model. I really felt like the Samara I thought I knew had died. I wanted THAT Samara back - not this imposter. To make it worse, I had considered adopting or fostering DS kids. And here I was rejecting the one God had given me. Boy did I feel stink. I couldn't fathom these thoughts that were going through my head. I guess it's one thing to choose to adopt a disabled child. It is quite another to create one. I felt so bad for her. It is not as altruistic to accidentally give birth to a DS baby as it is to adopt one. Gee, now I was realising that my ego was taking a bashing, and I was going along with it. But no matter how much I hated my selfish thoughts, I couldn't stop them. Then there was my grieving for the life Samara wouldn't have. I could only see her future as mopping floors for MacDonalds. No marriage. No children. No choices.

And yet, I know people with DS. I know how much better their prospects are these days. But I didn't know that those prospects are better than I thought. She COULD get married. She MAY have children. She CAN go to university. But back then, I had so much less knowledge than I thought I did.

Mum works in a group home for adults with Down Syndrome. They are lovely people. But I didn't want their lives for my precious baby. Of course, these adults were all born in a time when institutionalisation was the standard course for DS kids. There was no early intervention. Today's knowledge means her prospects are so much better.

I went to my scan at 4.30, still bawling my eyes out. They thought I might have appendicitis and sent me to the Emergency Department. Well, everyone knows what those places are like. The waits are awful. But I must give them credit. After telling them about Samara, they were more than happy for me to come and go, so I could get in some time with her during the waiting times. After 12 hours and a CT scan, they decided that it wasn't my appendix they were seeing, but a fallopian tube that had swollen to the size of the appendix. I was admitted to the maternity ward. One advantage of being re-admitted, is that you get your own room rather than sharing a room of 4 beds. So at least I had some privacy to do my blubbing!! It was also nice to be so close to Samara again. She was just 1 floor below me.

On the sad front though, I wasn't staying with Alicia any more and she was going to be going home soon. You know, the girls all took the news in their stride. They saw it as no big deal. Which is a good thing, but they couldn't understand what I was so upset about. It was probably a good thing I was in hospital, so they didn't have to see me in my grief.

Something I didn't know before this was that there a lot of health problems associated with Down Syndrome. Heart defects, thyroid problems, muscle weakness, breathing problems, low immunity, higher risk of leukemia, higher risk of coeliac disease etc. I wasn't really ready to cope with that knowledge. She had an echo done that day, which showed only a very small heart defect, that would not cause any problems. So that was a huge weight off.

Well, I am feeling a bit emotionally spent now, so will continue later......

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