# Monday, 27 October 2008

Hurray, she's put on some weight!

Just a quickie as I have some encouraging news.

On Friday afternoon, they started giving Chaya Devoira a high energy formula, along with the mother's milk that she was having. The idea was to try and get extra calories into her to build up her weight. Due to her weak heart, more extra nourishment is needed to keep her heart going, so less is available for growth. The high energy stuff is supposed to provide enough to allow for growth as well.

Boruch Hashem, they weighed her today (Monday) and she has put on 180 grams. This doesn't sound like much, but it's probably around a 9% increase in her total body weight in three days. Seen like that, it's pretty good.

They are keeping her in for a little longer as they want to be certain that the increase is consistent. Unfortunately, they won't give us any idea of how long they want to keep her, but we are hoping that if she shows a consistent increase, they may let her out before Shabbos.

Thanks again to everyone who sent such kind wishes, and thanks to everyone who has davenned for her. Please keep davenning for Chaya Devoira bas Sharon Yehudis as she's not on the home run just yet!

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# Thursday, 23 October 2008

Post-Succos update and some new pictures

It's late, and the Mrs would not be happy if she knew I was doing this right now. Unfortunately, she's back in hospital with Chaya Devoira... but I'm getting ahead of myself.

I mentioned last time that they had come home in time for Succos. That was wonderful. The fact of having a built-in succo for the first time made a big difference as well, as Chaya Devoira would not have been able to stand the cold and draughts of our old shed-type succo, so at least the Boss and baby could sit in the succo with us.

I even managed to get a picture of the four little girls (and a panda), although you can't actually see a great deal of the Lady In The Limelight in this one...

Four little girls and a panda

In case you were wondering, Chaya Devoira is wrapped up in the blanket that Chana Liba is holding! It's actually quite hard to get a decent picture of her, but I managed a half-decent one here...

Chaya Devoira

Unfortunately, the tube up her nose does little for the charm of the picture! I know I'm biased, but she's actually a very beautiful little baby bli ayin horo, but she doesn't seem to come out well in pictures.

Anyway, we had a lovely couple of Yom Tov days at the beginning of Succos, and pleasant, if uneventful Chol Hamoed days. All seemed to be going well - obviously too well...

On the Sunday of Chol Hamoed, the nurse came for her regular visit, and weighed Chaya Devoira. She was very concerned that instead of putting on weight, she seemed to be losing the little she had. Given that she needs two fairly major heart operations, it is critical that she gains weight now. The nurse said we should get her down to the hospital to have her checked.

We should have known what was coming. I guess a week of relative normality at home can make you forget the roller coaster. After a couple of checks, the doctors decided that she needed to stay in hospital for closer examination. They wanted to keep an accurate check of how much milk was going in, and how much was coming out. At least this wasn't erev Yom Tov or erev Shabbos as we've had before. We had a little more time to prepare for Yom Tov in hospital this time, although that didn't make it any easier for the Mrs.

Nechoma Bryna, Aryeh Yehuda, Eliyohu and myself walked to the hospital on Sh'mini Atzeres afternoon. This was about an hour each way, but worth every step for the expression on her face when we walked in. I hope you never have to spend Shabbos or Yom Tov in a hospital, but if you ever do, you'll understand how hard it is to feel the Yom Tov mood. For everyone around you it's a normal day. Nurses are bustling in and out, televisions are on around other people's beds, and you're sitting their in your Yom Tov clothes, trying to muster up some feelings of kedusho. Boruch Hashem, she had a cubicle to herself, which helped cut out a little of the outside world, but it was a far cry from Yom Tov at home. I think we managed to raise her spirits somewhat.

It's now late Thursday night, and they've been in hospital since last Sunday, with little prospect of an early release. The doctors have said that they aren't letting her out until they see an increase in weight, but as they don't really know why she isn't putting on weight, we aren't sure how long this stay is going to be. Boruch Hashem, we have coped well here, but the strain is beginning to show. Hopefully things will ease up a little next week when the children are back in school, and there is a little more order in our lives. We all love holidays, especially when there's a Yom Tov, but it throws out the routine, and that can make situations like this one harder.

As mentioned above, Chaya Devoira was supposed to have two heart operations at five or six months of age. The idea of waiting was to give her time to gain some weight, and have more strength to survive. In a bizarre Catch-22 situation, one of these operations is designed to regulate the mount of blood flowing into one of the arteries, which would help her gain weight (I'm not 100% sure how this works, my medical knowledge is already being pushed beyond its limits). If her weight doesn't increase soon, they are going to have to do this operation at a much earlier age, which is a fairly frightening prospect. We have to daven that they find a way to build up her strength beforehand.

Anyway, I'm going to end with another gratuitous picture. This one has the added benefit that you can actually see a bit of the baby!

Aryeh Yehuda, Simcha and Chaya Devoira

Too tired to type any more tonight, so I'll leave it there. Again, we would like to thank everyone who sent such lovely e-mails. I'm not sure we live up to some of the comments you've made, but we won't argue about that! If anyone has any time to say Tehillim, we would very much appreciate it if you could daven for Chaya Devoira bas Sharon Yehudis sh'tichye.

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# Sunday, 12 October 2008

First Shabbos together

Boruch Hashem, they finally came home, so we actually managed to spend Shabbos together.

Chaya Devoira is still feeding through a tube, to supplement the small natural feeds she has, so we still have to work out how to encourage her to feed more herself. Unfortunately, she is losing weight, rather than gaining it, so this isn't so easy, but the Boss is working on it.

Anyway, it's way past my bedtime, I have bronchitis and feel lousy, so I'm not typing any more. A wonderful Yom Tov to you all, and I'll try and get a more up-to-date picture of the little princess on here soon.

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# Tuesday, 07 October 2008

Boruch Hashem, some encouraging news, but still in hospital

Tuesday 5pm

We had been waiting for a few results to see what the situation was. Of these, the heart issue was the most serious.

The cardiologist came today, and said that as far as he was concerned, she could go home. This was wonderful to hear! He said that they can give her medicine to regulate her heart until she is about six months old,
when they can do the first of two operations to fix the murmur.

Also good was that she doesn't seem to have a virus, so can come off the antibiotics. She does have a slight abnormality with her thyroid gland, but that's not uncommon, even amongst people without Down's, and can be fixed with medicine. We're still waiting to hear from the respiratory people, but I don't think that's too serious. All of this adds up to an encouraging picture.

Not so good, although boruch Hashem not bad, was the news that they won't let her home until they can see that she is feeding properly from the Boss. Feeding through the tube has its benefits and purposes, but they need to know that she will feed naturally before they let her go. Unfortunately, this means that both she and the Boss have to stay in hospital for feeds every three hours (bleah, broken nights on a military scale!) for at least a day or two more. This means that she will have to stay in over Yom Kippur, which doesn't fill her with glee.

Still, in health terms the news is good, so we are very happy. It's not quite how she would have wanted to spend Yom Kippur, but it's obviously how He wants her to spend it, so who are we to argue! It's a small price to pay for a healthy baby.

A g'mar chasima tova to you all. May Hashem Yisborach multiply his brochos on you manyfold, and may we all only see simcha in the future. We've certainly got a little bundle of that right now!

P.S. I'm intending to get an up-to-date picture later today, so will post it here. I have been a bit reluctant to photgraph her over the past few days as she looked so fragile and vulnerable with all those wires and tubes. B"H most of those have come off now, so she may be up to posing for the camera!

Update 7pm... Well, it seems things may have changed for the better. Apparently the thyroid test can give an abnormal reading at this stage, so they are not going to do anything about that right now. They'll test again in a cople of weeks. More importantly, the dietician had a check, and said that as long as Chaya Devoira is taking enough milk, she can go home. The Mrs asked if that meant her feeding, and was told no. She pushed them a little, and got them to agree to teach her how to feed through the tube, which apparently isn't as simple as it looks. If they are happy that she can do it without problems, they will let them come home. This means that they could be home before Yom Kippur! I'm not holding my breath, but I'm saying Tehillim. Mind you, it would be hard to do both anyway!

I have always felt that Hashem Yisborach has a sense of humour (if I'm allowed to say that), and now I'm sure! Thank you Hashem :-)

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# 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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# Thursday, 02 October 2008

Latest news on Chaya Devoira

Been a hectic couple of weeks! Between the appearance of Chaya Devoira, a house full of builders (yeah I know, bad timing eh?) and Yom Tov, I've hardly had time to think. I've just got ten minutes now to add a post here before I get back to my washing, cleaning, organising supper, etc. I'm learning how hard it is to be a Mummy, and appreciating once again how much she does the rest of the time!

Anyway, they finally came home from hospital on Tuesday 21st Sept, one week and two hours after the Boss went in. Everyone was delighted to see them, even though they spent a lot of time hiding upstairs trying to get some rest. Chaya Devoira was turning a delightful shade of yellow, which was actually a cause for concern as she is small. She was sleeping pretty much the whole time, and not feeding a lot, which wasn't helping her fight the jaundice.

As a result, we had a call from the midwife on Friday morning who told us to get Chaya Devoira into the hospital without delay, as there was a doctor waiting to see her. To cut a long story short, she and the Mrs ended up in hospital again until Sunday afternoon. They had had her (Chaya Devoira, not the Mrs) under a UV light for 24 hours, and had got the jaundice levels down below the treatment level, and were happy that she was OK to come home.

About 18 hours later (Monday morning, erev Rosh Hashono), the midwife rang and said that the previous day's blood test had shown increased levels again, and they might have to go back into hospital. On top of the stress and emotional upheaval so far, this wasn't what she wanted to hear.

We spent the next couple of hours saying Tehillim, and B"H had another call to say that they would let her stay home and she how she got on. The midwife came in over Rosh Hashono to do some more blood tests. It seems that the levels are still too high, and we have to take her to the Special Care Unit tomorrow to have yet more tests. The poor little thing has had so many blood tests, that they are having difficulty finding a place to insert a needle. Coupled with her small size, which makes finding a vein hard in the first place, we are feeling for her.

Chaya Devoira 1st Oct 08

Anyway, on the positive side, everyone dotes on her, and she rarely gets put down (as long as the Boss allows). We don't have a shortage of people willing to look after her! Aryeh Yehuda even offered to take her at 3am when she wakes up! Given the problems I have waking him up at 6:30am on a normal day, I'm not sure how successful an idea this would be, but the thought was nice.

For those that haven't heard yet, I should mention that we had confirmation that Chaya Devoira has Down's Syndrome. The doctor suspected this when she was born, due to a slight slant in her eyes, and a couple of other signs that they recognise. It took some time for the tests to be done and results confirmed. Right at the moment, the only real difference it makes are a few more blood tests (like she's not had enough yet), and a heart scan in a couple of weeks.

It's funny in a way, as Nechoma Bryna told me just a few weeks ago that she wanted to work with Special Care children, and now she has the chance of in-house experience. As it happens, I made some enquiries about it myself a few months ago. I have been considering a change of career (fed up of computers), and think that this is an area that I would find rewarding. Again, I have the chance for some first-hand experience!

Some people have felt a bit awkward when we have mentioned the subject, so it's worth mentioning that we do not see this as a bad thing in any way. She is still our baby, and we feel about her just the same as we do about the others. She will have her own special requirements, but the truth is that every child has their own special requirements. Each one has to be treated as they need, as Shlomo HaMelech so wisely put it in Mishlei (Proverbs) 22:6 "Raise the child according to his/her way."

The Torah attitude to such children is actually very different from the secular one. Everyone comes into this world to achieve a certain purpose, and when we have done that, we return to Hakodosh Boruch Hu. Just as you give a worker only the tools he needs to complete a job, Hakodosh Boruch Hu only gives each neshomo the tools it needs to achieve its task here. Sometimes, a neshomo comes into the world that is so elevated already, that it does not need a great deal of tools to complete its task. Such neshomos come to the world as special needs children. Yes they are special, but in a much more fundamental way than the world at large considers. We are privileged (and yes, a little nervous) to have been entrusted with such a precious neshomo. The great Torah leader the Chazon Ish zt"l would stand up whenever he saw a Down's Syndrome person. He said that one should show great respect for such a lofty neshomo.

I should counter all that with the admission that we are nervous. We have little idea of what is ahead, and we know that it is going to be a hard road. Having said that, talking to other people in the same position, it seems that the rewards are infinitely greater. Apparently Hakodosh Boruch Hu thinks we are strong enough to cope, so we aren't going to argue!

The children took the news with surprising maturity. Their attitude was simply that she is special, and we need to give her even more love and care than we would have done anyway. They are very upbeat and open about it.

Anyway, I have used up far more than the ten minutes I had allocated! I have to go and get Simcha from playgroup, and the next two from school. I will end with a picture of Chana Liba (straight after a bath, hence the pyjamas and wet hair) holding Chaya Devoira...

Chana Liba holding Chaya Devoira 25th Sept 08
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