# Monday, 01 December 2008

Maybe it's wishful thinking, but...

I went into Chaya Devoira's room this morning when I came home from shul. She was awake in her cot, looking at her mobile.

I should point out that I am referring to the colourful decorations, often found hanging over babies' cots. I was not referring to a mobile telephone, as some more astute readers may have realised. We decided not to let Chaya Devoira have a mobile telephone in bed, as we were concerned that she would spend too long chatting into the night, and would not get the rest that she needs before her operation.

As I walked over to the cot, she turned her head towards me and gave the most beautiful smile! Her whole face lit up. The Boss thinks that she does smile at faces she recognises, but I'm not so sure. I don't seem to remember the others smiling quite this young, and given that she is likely to develop later than the others, I think it might be wishful thinking.

Either way, it made my day :-)

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# Monday, 24 November 2008


Anyone who was ever a fan of Monty Python and the Holy Grail, as well as Dr Who will find this hysterical...

For those not in the know, the song is from the Monty Python film, and was sung by a load of medieval knights in the castle of Camelot (King Arthur's castle). The lyrics are excellent if you can make them out ("It's a busy life in Camelot, we eat ham and jam and spam a lot"). The video is a collection of bits from recent Dr Who films featuring the deadly Cybermen.

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New picture of Chaya Devoira

Chaya Devoira managed to pull out her feeding tube this evening, resulting in another unexpected (but thankfully brief) visit to the hospital to have it put back.

One benefit of this event was that I managed to get a picture of her without the tube...

As you can see, she is all wrapped up in her snug coat, ready to go to the hospital for tube reinsertion. She is still putting on weight nicely, although we won't know if it's enough for the heart operation for a few more weeks.

That's all folks!

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# Monday, 17 November 2008

Putting on weight (Chaya Devoira, not me!)

Phew, been eleven days since I last wrote anything here. Guess that pretty much sums up life at the moment - very hectic and no time for everything.

Anyway, the great news is that Chaya Devoira is putting on weight nicely. She's up to about six and a half pounds now, which is good, but still leaves here with some way to go before she is big enough for the heart operations.

The surgeons at Alder Hey hospital in Liverpool (where they are to do the operations) are going to review her case again in 3-4 weeks to decide on a date. From what we've heard, the effects of the second of these operations can be quite dramatic. Someone said is was like a light bulb had been switched on in the baby - suddenly he was eating, gurgling, growing and looking around more. IY"H we will see great benefits from it too.

We had a scare on Friday. The nurse from the hospital rang to say that Chaya Devoira's potassium levels were too high. Now, I only know two things about potassium, and neither was very helpful. The first is that if you take a small piece of raw potassium, and drop it in a bowl of water, it whizzes around the surface fizzing for a few minutes, before burning with a small, but bright flame. If you have a chemistry teacher who is easily persuaded, you can convince him to drop a big piece of potassium in, which causes a fairly impressive explosion! Chemistry was fairly dull, but it was brightened up by the odd interesting incident like that!

The only other thing that I know about potassium, is that you get it from eating bananas. Now, as far as I know, Chaya Devoira doesn't eat bananas, mainly because her hands are too small to hold them properly. Maybe we should have held them for her, and she wouldn't have had low potassium levels :-)

Be that as it may, her levels were too low, and it seems this can be dangerous. They whisked her into hospital on Friday lunchtime (it would be Friday wouldn't it?), and threatened to keep her there. After much Tehillim, and some smooth talking with the nurses, they allowed them to come home, although they only arrived ten minutes before Shabbos. To make a rushed time even more rushed, they arrived home with an impressive array of new medicines (to complement the existing impressive array), as well as a pill cutter, a pill crusher and a whole new lot of plastic syringes. This baby is certainly making life interesting!

Anyway, boruch Hashem, things have settled down again, and we are back in some sort of normality (or whatever passes for that in this house). We are trying to get the last bits of our building work done, having told the builders not to come back, so that adds yet another thing to my ever-increasing list of things to do!

OK, ending here as supper has just landed on the table, and it's parents' evening for Nechoma Bryna in 25 minutes. Phew!

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# Thursday, 06 November 2008

Why do women have so many more clothes than men?

Amongst everything else, we have builders in the house. Part of the modifications that they are slowly doing involves moving our bedroom from the ground floor to the middle floor, and the living/play room from the middle floor to the ground floor. Due to the extra workload I've had with the Boss and baby being in hospital, this has happened over a period of several weeks. One result was that we had a bedroom upstairs, and the Boss' clothes downstairs (well, she wasn't here to need them, and I had enough else to do that was urgent without shifting things that could wait).

I finally got around to moving her clothes upstairs the other day, and was amazed at how many she has. My wardrobe consists of white shirts (about ten), black trousers (about four or five pairs, which I consider to be quite a lot), one weekday jumper, one Shabbos jumper and a suit. She has enough clothes to stock a medium-sized boutique in a fashionable district of Paris - albeit with the wrong sort of clothes for such a place! It seems that women have a completely different wardrobe depending on the time of year. The only difference between my summer and winter wardrobe are the two jumpers mentioned above! Why do women have so many clothes?

I suppose this isn't a new question. It probably goes back to the time that Adam wondered why Eve had three fig leaves and he only had one!

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I've seen this thing before, it looks familiar!

I'm sitting in my familiar chair, grey and comfortable (the chair, not me - although some may say those words apply to both), contemplating the object in front of me. It looks vaguely familiar, but I can't quite put my finger on it. Actually, I did put my finger on it, which is how you can read this blog entry.

All of which is a rather bizarre way of starting the first blog post for ten days. It's actually the first time I've switched on my computer for ten days, which is probably why it all seems so foreign. I've been so wrapped up in other things, that I never really thought about it. For someone that works with computers day in and day out, I didn't miss it at all :-)

Anyway, enough waffle, time for an update...

Boruch Hashem, the Mrs and Chaya Devoira finally came out of hospital after Shabbos, having been there for just short of two weeks. Chaya Devoira is putting on weight at a nice rate, and they seem happy with her. She was last weighed on Monday (it's now Thursday), and she was 2.76Kg, or just over 6lbs 1oz for those old-fashioned folks like me who can't get their heads around Kilos. They want her to get to about 4 or 5Kg (which is between 9lbs and 11lbs) before they will do the first of the heart operations, but the way she's going, that looks like being well within the original time scale of less than six months old. Here is a picture of them both in our house, just to prove that they got here!

The Boss and Chaya Devoira

Life here has settled into a semi-normal state. The Boss is still very tied up with Chaya Devoira as she needs feeding every three hours (Chaya Devoira, not the Mrs, although she would also like to be fed every three hours), so by the time she's fed her, then given her an impressive cocktail of medication, prepared the expressed milk and high-energy formula, got that down the feeding tube, flushed out the tube, tidied away the equipment and expressed milk for the next feed - it's almost time for the next feed! That leaves me running the house, although with a little help from the Boss, and without any commuting to the hospital, it's easier than it was.

Sadly, our builders have lived up to the reputation of builders everywhere, and the work in the house has dragged on. They're still here, although are thankfully in the final stages. It's all the little jobs at the end that seem to take forever, and make a disproportionate amount of mess! Quite apart from my usual dislike of having workers in the house, we could really do without them right now. Still, I'm sure it will be nice when it's finished! That's what we keep telling ourselves!

Not a lot else to report. My parents have gone to Eretz Yisroel for the wedding of my second cousin Shmuel Meir. We would have loved to have gone, but it was completely out of the question right now. My in-laws are coming in a couple of weeks, so that's something to look forward to. Apart from that, it's housework and nappies!

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# 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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