More Croup

Firstly, I don't know why and I haven't had a chance to figure out how to fix it, but Yuval's blog from Austria has vanished from the front end. I will fix it in time.

Secondly, this blog tool doesn't let me read the comments easily and I only just found a bunch of comments recently, so, sorry to the people that must think I have been ignoring you. I only got the comments in the last few days! Thank you for them.

The rest is about Tova and Nissim...

Sunday afternoon we noticed that Tova was breathing and coughing a little bit unusually. Nissim was also coughing and acting quite miserable. I packed a bag ready to go to the hospital. Before Yuval and I made the 'go to hospital' decision we decided to put the ventilator in Tova's room and give her panadol (Nissim absolutely refused to take the medicine). After about 20mins she fell asleep with no coughing or funny breathing.

4am, she woke with barking coughing and terrible breathing.

Nissim was still sound asleep, he was coughing a little in his sleep, but not as bad as miss T.

By 4.10 Tova was being administered Adrenalin and steroids. 'Lucky' we live 2 mins from the hospital.

She didn't respond to the first lot of drugs, so they gave her a second lot (just like last week).

Again, she wasn't improving fast enough so a Dr from PICU came down to check her out. He hung around for a while and then came to see her every half hour or so for about 2 hours.

After another lot of steroids Tova started to improve. The PICU dr vanished and I thanked the powers that be!

When Dr 'eye candy' picu told me that Tova would probably be going there I got scared! I don't even know what he was saying to me, all I could think about was how a friend had a beautiful baby pass away in there and another put in an induced coma..

It was pretty annoying going to the ward yet again, but far better than going to PICU.

Nissim was with Savta Aviva for the Monday as uv was working. When Yuval picked little N up, he took him strait to the GP who said that Nissim had 2 ear infections. He is pretty snotty and coughing loads. Poor little boy.

By the time Tova and I got home on Tuesday I was missing Nissim so much it hurt. We had lots of cuddles and smiles when I walked in the door. He is gorgeous. Poor little sickies.

Everyone woke up this morning a little better. Tova seems fine other than being a little lethargic. Nissim is a pool of snot and coughs but on Antibiotics that will hopefully fix him quickly.

While in hospital no one mentioned that I should tube Tova, again that is a massive breakthrough in my mind.

The dietitian offered to weigh and chart Tova, I said 'no thanks'. She asked why and I told her that the only thing weighing and measuring does is make me stressed, it doesn't make Tova grow. I can't fit more food in Tova as she is a little pig and eats loads each day. The dietitian didn't seem bothered.. I almost fell over backwards.. perhaps attitudes are changing! I hope so.

Stupid tubes.. I hate tubes that aren't necessary. There is no way I could love a feeding tube in a child that is able to eat. I personally think it is child abuse!

Croup

Nissim has started Creche. He had three days of orientation last week, which of course went well. I told them on the first day that they were possibly crazy to ask me to stay for three days to help settle him in. It took about 3 minutes and he had forgotten who I was. But they asked me to stay for a while. I died of boredom and tried to keep Tova busy playing away from Nissim. After an hour or so I told them I should go for a while to see how he goes.

I returned a few hours later to a very happy Nissim (as I expected).

The second day I really, really wanted to leave as I was extremely bored sitting around reading to Tova and gaining a massive audience on the reading mat. So I again told them I should go. This time Nissim came with me as it wasn't his official day at creche.

The third day, I didn't stick around to get bored. I dropped him off early and picked him up later in the afternoon. I even went and had a spray tan (with Tova, who ended up getting some on her too). That was fun!

Tomorrow is his first day with no pressure on me to stick around. Which is better for him, Tova and me. He is a social little man that loves creche! And he has been going to my gym creche for years almost daily (only an hour and a half at a time, but it has made sure he doesn't suffer from separation issues). I am very much looking forward to him spending an entire day there.

The staff there are fantastic. They are all so friendly and positive. I am very impressed with the entire place. It is friendly, clean, modern and FUN! They only had one place or I would have put both kids in there. Hopefully another place will come up soon.

So, as Tova has been attending the orientation days with Nissim and I, she of course, unfortunately picked up croup. Tova was due to start back at her play group (it has been on term break) on Thursday, but she woke up not breathing properly.

I gave her ventolin, it did nothing. I waited a while and gave her some more, it did nothing. She was in a very good mood, so I fed her breakfast. She ate it all, 2 weetbix, fruit and a drink. I gave her more ventolin, and again it didn't help. She was still happy but breathing terribly.

Two hours past since she woke up and she was still having trouble breathing. Off to Monash Hospital we went. Croup!

The doctors said it was sever and she was quickly hooked up to monitors and given steroids and adrenalin. She improved dramatically over a few hours. However, we were admitted for the night as apparently croup gets worse during the colder hours of night.

Some how we managed to get a room to ourselves, it even had a view of the special care windows where both my kids spent many months.

The night passed with out too much trouble. Tova did wake during the night and have some difficulty breathing, I was thankful to be in hospital, as if we had been home I would have heard her breathing like that and had to go to the hospital during the middle of the night. The nurse on duty was lovely and said that Tova was doing great, that her O2 was good and her breathing noises were to be expected.

The next day we eventually got seen by the doctors on duty who said we could go home. We had lunch and got home early afternoon. Not bad!

Throughout the entire ordeal Tova remained in an extremely good mood, only skipped on meal (and made up for it later in the afternoon anyway) and was a little bundle of gorgeous normality. Other than the breathing, there was no way of telling she was so sick!

It was quite scary as I didn't know what croup was. The doctors filled me in and gave me some literature to read. They said it was almost definitely something Tova picked up from Nissim's creche... great.. Now I wonder if I should send her to creche at all... Little T and her little immune system.. ahh the life of a micro premi...

Nissim didn't get sick thank goodness. Even thought he was so prem, he seems to be stronger, thank god!

While we were in hospital,  not one person mentioned anything about how small and thin Tova is, no one mentioned tubes even once. It was a great feeling. Tova was treated like a 'normal' person with croup. I was very impressed!

An Emotional But Great Week

One year ago today we were sitting on a plane heading home from Graz. All of us were eating like people do. It was a huge contrast the the flight over to Graz where the flight attendants fell in love with our story and gave us gifts of well wishes and wine. On the way home we were nothing special, just a normal family feeding our children and watching them struggle a little on such a long flight. It was nice!

This past year Tova has become a professional puree eater. She is able to eat huge amounts happily! For some reason she doesn't put on much weight, but certainly doesn't drop her weight either. The last time I weighed her (a few weeks ago) she was still 9.1kg. She looks a little bit thin but almost in proportion for her height. And is a very happy little girl with energy. So, I don't worry so much anymore. This year has hardened me up and changed the way I view food and eating.

Today Tova has an ear infection, and has had it for the past few days. If the right ear hadn't had a discharge, I wouldn't have even known she was sick. She is eating and drinking and sleeping and acting completely normal. This is the first time she has been so strong while having an infection. In the past a common cold has sent her to the hospital. HOWEVER, she is now on antibiotics as they started to hurt her a little. It is quite remarkable to see her this 'healthy' while sick.

The professors from Austria were here last week. They did a quick trip to Australia visiting Brisbane and Melbourne. In both cities they conducted play picnics for parents and educational conferences for medical specialists. A few other tube mums and I helped organise it. So it has been a rather busy past month for us!

The play picnic (melb) was a great success in the fact that over 50 families attended. It was hard for the professors to talk to all the parents, but I guess if they even helped only one family and raised awareness in many more that is a great start.

The Medical conference here in Melbourne had about 200 people attending and was also streamed live to other major hospitals around Australia. I couldn't go as all my baby sitters were either working or cooking. I was updated by txt message through out the day and then at the end was told that perhaps it was a good thing I hadn't been there as I would have spent my entire time being angry at what was being said by the speakers (all those except the Graz professors).  I am hoping to get a recording of the day, eventually. I think it will also have a home in the RCH resource library and possibly be available for purchase!

Karelle, the owner of www.tubefedkids.com came up for the events too. She gave a talk at the beginning of the medical conference that apparently brought quite a few people to tears. I am sure that had I been there I too would have been moved to tears. Karelle did read me the speech earlier in the week and yes, it really is a moving and well written story.

While MDS (professor from Austria) was here I did get the opportunity to show her Tova. It was a very quick hello as it was getting late at night and Tova wanted to go to bed. But MDS did say that Tova is looking good and not as bad as she had imagined her to look.. That is a good thing. All the mums that organised the Melbourne events and a few others enjoyed dinner with the Graz professors on Friday night. The professors are Jewish, so I invited them over for Shabbat dinner. We all went to my mothers house where my mother in law and my mother had cooked up a feast. There was so much food and extremely lovely company. The night was outstading! I also finally got to meet Tash, who helped me fill out the forms for the funding to go to Austria in the first place. She in turn got to meet Karelle, who had helped her get the funding.

I have spent the past week in terrific company focusing on helping Australia change the way it treats children with tubes/ preventing tubes. It has been incredible. Thank you to everyone that participated and let us watch the change happen asap! Don't worry, we won't let the flame burn out. We won't stop until there is major change to our system. Already there has been interest from a NICU about PREVENTION!! That blows me away! It is fantastic.

On another note, Nissim has introduced us to the world of terrible twos.. WOW. EVERYTHING is NO! Everything! He is very difficult for me mostly, yuval a little and pretty good for everyone else.

Also, he starts creche next week! 2 days a week. I am looking forward to it! He will love it.  I hope to find Tova a place soon too. It would be nice if they were in the same creche, but they only had one space.

swimming and eating

Tova is eating well. Good amounts at least. No improvement on the self feeding nor the lumps. Oh and she still needs a song and dance festival (or dvd) to eat to. But yes, eating lots!

We went away on a family holiday last week to Daylesford. We stayed in a beautiful 3 bedroom house. Our room had a massive king sized bed and a walk in wardrobe that functioned as Nissim's bedroom. Our en-suite had a shower, spa bath and of course toilet.

The other king room was for my brother and his family! My mother and Rus stayed in the front smaller room.

It was fun to be away on our holiday with family! We had bbq's for dinner and sat on the deck with our 4 kids. Nissim and his cousin Vicky LOVED each others company! It would be lovely if my brother and his family lived in Melbourne!

We took the kids swimming one afternoon before the big storms (the ones that flooded QLD and VIC) started. Our kids hated it. They have always hated the swimming pool!

Today (back in Melbourne) was a hot day so we took Tova and Nissim to the pool at Yuval's gym. Of course they hated it again! HOWEVER! After 15 or so mins, Tova actually started to smile! In the end she had a heap of fun! I still can't believe it!

Nissim was another story. He REALLY hates the pool. He likes the word and the idea, but once there, he falls apart. After about 30mins of walking around with Yuval, we swapped, uv played with happy Tova in the water and I went and hung out far away from the water's edge with my little Nissim!

Eventually I picked him up and we did jumping. Every now and then I jumped closer to the pool until I was right at the edge. He did notice and did tell me that I should move back to where we started, but each time I jumped with him in my arms he smiled.

So, we got closer and closer until I was standing in the water with a very wary NIssim in my arms. He was holding on so tight (it felt nice as he isn't a hugger normally).

After AGES I was able to walk into the water holding him! He was very emotional and kept telling me 'OUT OF THE PUDDLE!!!  Out of the BIG puddle!!! IMA, out of the puddle!!!'.

Yuval and I swapped babies again and Nissim managed to smile nervously on a step in the 'puddle'! He isn't liking the pool yet, but one big step closer! I am proud of Nissim for being so brave and trusting! Even if he was crying most of the time!

One Year Ago

One year ago today we had been in Austria for a couple of days and were recovering from Jet Lag.

Tova was tube fed and Nissim had just figured out how to walk.

This year we are in warm Melbourne happy, healthy and fat.

Tova hasn't been tube fed for almost a year and Nissim is trying to learn how to jump. For some reason he finds it really hard to get both feet off the ground. We need a trampoline.

I guess I can stop worrying about Tova and her eating now. She has proven that she is an eater not a tube fed kid!

Now to master the finer arts of self feeding and eating non pureed foods.