# Monday, 06 October 2008

I used to like rollercoasters!

Well, just when we thought we had settled into a nice peaceful routine, we got free tickets to a White Knuckle Ride all of our own! For those of you who have enough sense not to know what one of those is, it's the sort of ride at an amusement park that makes people's stomachs do weird things that you don't want to discuss over dinner!

Anyway, on Friday (3rd Sept, warm and sunny), the Boss took Chaya Devoira back to the hospital for what was supposed to be a routine blood test. This should have taken an hour or so, leaving plenty of time to get them home before Shabbos. We were all looking forward to her first Shabbos at home. It seems that Hakodosh Boruch Hu had other ideas!

It turned out that they couldn't get any blood, as Chaya Devoira's body temperature was too low. They put her in an incubator for half an hour to warm her up, but found that this didn't help. Concerned at her inability to hold a safe temperature, they decided to keep her in for observation for 24 hours. So, a mere three hours before Shabbos, we found out that Mummy and Chaya Devoira would be spending the third of the three Shabbosos of her life in hospital. Obviously, there was a lot to do, as we had not made any plans at all for this. Somehow, we managed to get everything organised, and had Shabbos as ready as it could be under the circumstances at home, and food and supplies with them in the hospital. The mood in the house was a little subdued to say the least.

Around 5:30pm (about an hour before Shabbos), they transferred them to the Royal Manchester Children's Hospital with Chaya Devoira in an incubator, and an ambulance with sirens blaring. I guess this would have been an exciting experience under other circumstances, but unfortunately the Boss wasn't in the right mood to enjoy it. As it happened, I was ill that Friday and Shabbos (been running on adrenaline for too long), and so didn't walk to see them on Shabbos afternoon, which was a good job as I thought they were in an entirely different hospital altogether! They didn't get to the ward in time to ring me before Shabbos to let me know where they were.

Anyway, once there, they hooked Chaya Devoira up to a monitor that checked all sorts of things, and kept an eye on what she was doing. On of the things they monitored was the saturation of oxygen in her blood. In a healthy person, this should be between 90% and 100%, but is allowed to go down to about 80% without too much cause for alarm.

As the Boss tried to feed her, alarms went off as the level plummeted to around 40% (pretty dangerous). They quickly put her on an oxygen feed, and whizzed her off to the cardiac unit where they did various x-rays and scans. The result of this was something we had feared, but had thought we had avoided. We had been told that a common problem with Down's Syndrome babies is a heart murmur, which their initial checks had not found. It seems that she has a large hole between the two main ventricles of her heart, as well as a smaller hole, and a vein that would normally have disappeared at birth. This all adds up to open heart surgery within the next few months.

Bear in mind that I knew nothing at all about this, as this was all late on Friday night. I had retired to bed early, feeling decidedly ill, safe in the (incorrect) knowledge that they were merely keeping an eye on her body temperature. The Boss was alone in the hospital, faced with the prospect of major heart surgery on our little princess, with no-one to hug. Needless to say, hers was not a happy Shabbos.

When we arrived after Shabbos, Chaya Devoira was wired up with an electric blanket, an oxygen feed, various monitors and scanners, and a tube going up her nose so that they could feed her directly, without interrupting her breathing. The poor little mite looked so small surrounded by all those tubes and wires. Yes, I cried.

Anyway, the next 12 hours were tense to say the least. Boruch Hashem a thousand times over, by Sunday morning, she had managed to keep her oxygen levels stable, her body temperature up enough, and seemed to gaining a little weight from the tube feeding. One benefit of that method of feeding is that they can make sure she gets enough milk, which had been a major problem until then. Due to her small size (and other factors), she didn't have much strength to feed, so wasn't taking in enough milk to have energy to feed, which meant she didn't get enough milk... and so on in a vicious circle. The direct feeding through the tube had broken this cycle, and had enabled her to take in enough milk to gain a little strength.

During Sunday she managed to take two proper natural feeds from the Boss. This was one of the most significant acts of her little life so far.

She didn't feed so much today (Monday), but had a good one about 8:30pm this evening. It's still too early to say for sure, but if things continue like this, we are hoping that she will soon be stable enough to come home. We don't want to get our hopes up too much, but she seems to be gaining a little strength. She has been more awake and alert, which is a good sign.

Not really much more to add. We are still waiting for the results of some tests to see if she has a virus (suspected, but probably not B"H), a defective thyroid gland (suspected and quite likely, but B"H fairly easy to sort out with regular medicine), as well as the pre-existing jaundice problem. That seemed to take a back seat with the events of the weekend, but is still with us. If her thyroid gland isn't functioning correctly, then it would help explain the jaundice, and should give another way of combating it.

OK, it's way past my bed time (whatever that is), so I'm going to leave it here. I just want to add a huge "thank you" to everyone who has sent such wonderful words of encouragement. Just knowing that you are all thinking of us makes a huge difference. Apologies for not replying to you all individually, but my time in front of the computer these days is usually restricted to a few grabbed moments before I crawl into bed.

I just want to end with an observation. Someone asked me how things were yesterday morning. When I had explained the situation, he groaned and said "Oy, what a way to start the year." I thought about this for a moment, and politely corrected him. We are in the intense period between Rosh Hashono and Yom Kippur. Every Jew is being judged in the Heavenly Court, and we are being called to account for our actions. What we need more than anything right now are merits. Our little bundle of wonderfulness has brought an unbelievable amount of chessed, mitzvos, love, unity and kindness into our community. We have been the recipients of an unbridled outpouring of the sort of support that only a frum community could provide. We have been carried on eagles' wings, not needing to think about anything other than Chaya Devoira. All of our needs have been taken care of. What an amazing start to the year! How could Hashem Yisborach fail to be impressed by the selfless acts of so many people? We have someone sleeping in the hospital right now so that the Boss can come home and get a good night's sleep. Where else do you find such a thing? Sure, we have some worries, but just look at what she has brought into the world. This little lady could well have been responsible for swinging the scales of Divine justice our way. I'm so proud of her!

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