Not much to report
Yuval went to visit his sisters and their kiddies last week up near Byron Bay. While he was away I got very sick and had to get my mother to come over and stay for a few days while I died in bed.
Tova ate really well for mum.
Neither kiddie got sick, thank god. It was just me.
Thank god for my mum and Russel. I am not sure what would have happened if they weren't able to help me.
Yuval came home I got better and Tova is still eating really well.
I got a phone call this morning from a friend telling me she just had a 24.2 weeker. A little boy! I lost my breath and held back tears. What a journey they are about to take. But the great thing is that the little dude is HUGE for a 24 weeker! He will be fine and strong.
There isn't much else to say. I might weigh Tova in the near future, Yuval said she looks skinny.
On Sunday I went to a fund raising event for premature births in Australia "Walk for Prems". The even was held at Albert Park Lake.
This was the first time I had been back to that park since I worked directly across the road 3.5 years ago, pregnant with Tova. Before kids I worked long hours and weekends and while in the office would occasionally take lunch breaks and wander around in Albert Park. The company I worked for were fantastic while I was childless, young, energetic party goers with a pretty good product to sell. In a nut shell we designed websites.
The last day I worked there was only days before Tova was born and considering I was only about 23 weeks pregnant I never imagined what life would be like in the coming days. I remember being at work and having bleeding, it completely freaked me out. All I could hear was a wooshing sound like the wind blowing in a storm and I felt like I had tunnel vision. I walked out of the office and down to the street. When I looked over at Albert Park I noticed an Ambulance and wondered to myself if I should go over to it and ask for help. I was too scared and confused. I rang Yuval and walked to my car. I don't remember much else, perhaps even Yuval came and got me before I got to my car, I don't remember.
According to my co-workeres my boss was shouting at me or calling out to me about my work while I was walking out, but I didn't hear anything. I feel a bit embarrassed about that, and am sure that they think I was ignoring them intentionally. I wasn't. It is strange what shock does.
The next few days are a blur but I ended up waking up saturated at some stupid hour of the morning, I got my neighbor to drive me to the hospital where I found out my waters had broken, I was about 23 weeks and a few days pregnant and I knew what it meant as it had happened to me a few years earlier at 22 weeks. I was devastated and sure that I was going to lose this child too. But somehow, by the magic of medicine and a little blue pill, they managed to keep Tova in me until 24.5 weeks when I developed a massive infection and so the magic pill was stopped. She had to be born or we would both die (this was also familiar as it had happened with my first pregnancy).
So at 24.5 weeks Miss Tova was born.
Returning to Albert Park brought back all those early memories, horrible memories of fear and tragedy. It was however, very interesting to be surrounded by 1000 people with similar stories. I even met two families with babies that were smaller than Tova when they were born, they were both around the 400 gram mark.. The only other baby I have met in person that was smaller than Tova is her friend William, he was 500grams. Tova was a massive 553grams!
Besides that memory lane event of the week, Tova went to the dentist yesterday. As I thought her teeth are eroded from all the vomiting in the days before the fundo. I asked (as I have asked many doctors before but strangely never been answered) why some of Tova's teeth seem to have not grown far out of the gums, the vomit dissolved them. Just brilliant!
Now I am even more annoyed at the stupid system for making Australian dietitians and speechies encouraging parents force feed and over feed tube fed kids until they vomit. I have so many regrets about listening to them. I just wish I had been able to use my own mind and think for myself. Who the hell puts more food into a stomach of someone whom has just vomited because a position on a stupid growth chart. OMG I am so glad I don't do that anymore. I feel so bad about all the abuse Tova suffered because of the stupid tube. And I feel that I have to stop it happening to other children. I can't understand how the medical world can be so stupid.
The dentist said that Tova probably had discomfort in her gums. I assume that it plays a roll in her not wanting to eat anything but pureed food. They didn't seem to understand my point and they had never heard of Graz or weaning from a feeding tube.
Perhaps we will wait for the public dentist (3 months) or find a good special needs kiddies dentist privately sooner. Poor Tova.
Eating is going well. Tova is eating loads. She is still only eating puree, but eating a good amount. Drinking is going well. She doesn't drink much out of her sippy cup, but I love that she is able. She drinks well from a cup if we feed it to her, that is good enough. She has even done kaka herself twice this week (no lactulose).
Nissim is being incredible. He is so good at talking now, but still refuses to say 'Yes', he won't even nod. He is fantastic at saying 'NO' and shaking his head. He is a little treasure.
Hearing and being well
I weighed Tova this evening 9kg.
She didn't get sick the other day. Thank god. Nissim however is a little bit sick today, snotty nose, drooling and coughing a little. It is almost as if he is teething. I am not sure if babies teeth at 2 years old, but if they do, that is what he is doing. Otherwise, he is just sick.
Tova seems to be really focused and we are thinking that it must be the gromits. Yuval and I are very glad we had them done. Tova is developing brilliantly since they were put in.
Feeling the Fear
Yesterday we took the kids to an indoor play center as it has been raining for what seems like eternity. We chose one that is called 'eco' blah.. and prides itself in being much cleaner and healthier than a 'normal' indoor center..
Tova wasn't enjoying herself for the first half, but once we took her into the jumping castle and Yuval started clowning around like a crazy person, she had a great time. Nissim thought it was simply fantastic. He jumped and fell and laughed and laughed and laughed and ran into the bouncy walls, he was great fun to watch. The three of them were fun to watch. I enjoyed sitting on the edge of the castle talking with my mum, who had joined us for the morning.
We took our exhausted babies home where they both crashed into sleep for quite a few hours.
At about midnight Tova started coughing. .. .. of course! My little premmi and her little immune system.. At least it was worth it, she really had a great time in the jumping castle.
The coughing didn't last all night, we put the vapouriser in her room and it seemed to help. She woke up fine but with a few coughs here and there. She ate pretty good, but not quite as much as normal.
The playzone girls said she wasn't quite herself today, she wasn't coughing, just not very happy.
She hasn't been acting sick all day, just a few coughs. No temp or green anythings. However, when I gave her a bath I noticed that her PEG site was a bit red and had been leaking a little (so very unusual).
After her before bed drink her nose started to run...
She is sleeping now, no coughing and no funny breathing.. I hope it is nothing.. But I am bracing myself for the 'no eating' part of being sick.. I hate it, it really scares me.. She is so freeking thin. But, there is nothing I can do, worrying won't help me!
Stupid play center.. They are so much fun, but so sick creating..
Adventures of Nissim
Today is Saturday, we decided to check out some garage sales with the hope to find some summer clothes for Nissim.
The kids are pretty good when we do garage sales. We are in and out and in and out and in and out of the car. However, Nissim found it a little frustrating today and so we opted to take him for a walk around the block to give him some exercise. As we had been wandering in and out of random houses he thought it was ok to enter any house he liked. He ran off down a drive way and into the back yard of a strangers house.
Next the we heard was 'oh hello there sweety, where did you come from, where are your parents? etc". We were laughing while walking down the driveway. The lady invited us all (me, uv, Tova and nizo) into her home for coffee. She was playing with her grandson who is a little older than Nissim. Also Jewish (we were in the ghetto) the little boys name is Raffi. It was cute watching them play together and when ever we asked Nissim if we could leave he said a big fat 'NO'. So eventually I bribed him by telling him we could look for Grandpa Russel outside, the moment I mentioned Grandpa, Nissim was ready to go.
Tova is eating well. She LOVES chicken at the moment! She is perfecting drinking from the sippy cup and it still blows me away to see her pick it up unmotivated (by me) and take a big (or small) drink. What an amazing baby!
I am not sure of the difference the Grommits have made. I can't tell. I am sure they must have made her more comfortable, but I just don't know about the hearing. I didn't think her hearing was that bad to begin with (and the tests showed that she was mostly in the normal range before gromits). So it is just hard to know.
We went away for the weekend just past.
We spent Saturday and Sunday nights in the middle of nowhere (near Healsville) with no internet and hardly any phone reception. I found that difficult!
The kids were good for the not so long drive there. We broke it up a bit stopping at garage sales and a stunning heritage estate now cafe, restaurant, function center. It was hard feeding Tova in the cafe, but she ate ok.
When we arrived to our accommodation, the owner wouldn't let us in because it wasn't 2pm yet, and 'check in is clearly stated as 2pm on their website'. pfft. so we hung around the carpark for 30 mins. When we were finally let into the cabin we quickly set up the portacot and nissim passed out almost instantly.
That night we met up with friends for dinner at the RSL in Healsville. Our kids had a great time running around and being toddlers. They were adorable. Tova ate ok there too, it was difficult (especially because I forgot to take the dvd player so I had to sing). But it is good to get out, even if it is hard.
The sanctuary on Sunday was fun for a few hours. Tova ate ok there too, but again, it was difficult. Mostly it is difficult because we didn't have the high chair. Nissim got very tired, as he does, and we left our group of friends and went back to the cabin.
Perhaps next year sometime Nissim will stop sleeping during the day.
So, home now, Tova is eating a little bit less than usual. But I am not worrying yet.
Nissim went to mums last night so that I could take Tova to the hospital for surgery this morning for gromits.
I got up extra early for me (6am) and got Tova up at about 6.45am. We drove the 2 minutes to the hospital where we waited for 2.5 hours until finally it was Tova's turn for her op.
I have now discovered that I am not so good at dealing with Tova and operations. I have never been the one to take Tova into the operating room and holding her while she falls asleep. Yuval has always been the one to do that. He was working from 6am this morning, so it was up to me.
If there is a next time, I don't think I could do it without Yuval. I felt like, actually I am not sure what I felt like, I just know that I didn't feel that I was dealing with it well. Watching her little eyes close with the gas mask on her trusting little face. She struggled a little bit and I was told to hold her arms down. Yeh, not for me!
I was quickly rushed out of the room and lead to a waiting room where I fidgeted for what felt like 5 mins, until the surgeon came in and spoke to me. He said that it was good that we had decided to go ahead with the op right away, as Tova has weak ear drums that were most probably causing her quite a fair amount of discomfort. He mentioned that it was hard to get the tubes in as her ear drums were sucked right back and surrounded by fluid, but they are in and they will fix everything. GOOD!
Then another what felt like 20 seconds and the nurse came and told me I could go to Tova in recovery. She was crying, but being cuddled by a nurse. They were so nice in there (it is a tiny hospital near us).
Tova wasn't impressed at all. She really struggled trying to wake up. I know the feeling, I hate waking up after an anesthetic. My poor baby! She just couldn't get comfortable and wow, she cried so loud. At least it was loud for Tova. The nurses were fussing about, commenting on how cute and little she is with her little cry. They made sure that her quiet cry was normal for her and not damage from the tube that she had just had down her throat.
It was very hard to not fall apart. But I hate crying in front of people, and I wanted Tova to feel safe and not scared by me crashing around her. So I held it together at least on the outside. The inside of me shattered with every cry she made. Eventually Tova became settled and we were told that we could go home. Amazingly all that happened in the space of one hour almost exactly. Very fast.
Tova was pale and very sad, but once in the car she coped a little better. I made a pitstop at the maccas drive thru for a coffee as my eyes were rolling into the back of my head.
Once home I put T in her bed. PERFECT place for her. Saba sat in her room watching over her for quite some time. Tova just slept. When she woke I gave her something to eat. She wasn't too hungry but ate. She has been a good water drinking today since waking up from surgery!
I missed Nissim today. When he came home later in the evening the table was all set for shabbat dinner (as it is every friday night). He walked in the door, noticed the table, ran over and said "Shabbat, Shabbat, kippa, challah, candles". HE IS SO CUTE! He insisted on wearing a kippa and every time it started to fall off he got upset.
Tova spent the day recovering as did I. By the time Yuval got home at around 4.30pm, she was feeling much better. They played and laughed together.
Now we wait and watch to see what magic the gromits will do.
Today has been a LONG day. Way too emotional for me. I am very sick of seeing Tova suffer and just hope that tomorrow she wakes a pain free little lady with excellent hearing.
Trying to Get Fat AGAIN
We weighed Miss T tonight --> 8.9kg.
The hunger strike is well and truly over, so we are now playing catch up.
Nissim is something like 11kg, I think most of that is Muscle (something Tova has nothing of).
It has been pretty boring around here in regards to food, thank god! Tova has been eating, Nissim has been eating, Yuval and I are always eating! Everyone is healthy. Everyone except me, but I don't count. I get a sinus issue every year, and have it again now, last year I broke my rib from coughing too much! This year I hope to avoid doing that again.
Tova has her Grommit op scheduled for next week, I hope we actually get it done this time.
We have started to put cotton mittens onto Tova's hands and sticky taping them to her pj's when she goes to bed. This is so she can't suck her thumb. Her thumb sucking is great, except that in her sleep she does it so much that she cuts the inside of her mouth making it bleed. She wakes up screaming, which is horrible. Poor little T. So far this is working really well. Her thumbs looked like they would fall off too, this has all healed now as well.
Not much to say is always good!
Syringes are so Yesterday
Tova has decided that she will not drink from a syringe anymore!
She is also on hunger strike day 7. I still have most of my sanity as I have discovered losing my mind doesn't help her eat at all. In actual fact, it doesn't change anything other than my heart rate and stress levels. So, yep, I am successfully not falling off the edge during this hunger strike!
I can't say that I am liking it much. I feel sad that she got to over 9kg and now, well now I don't know and don't want to know what she weighs. It could only be bad.
Today was the first day that I have ever (in Tova's life), taken her anywhere knowing that I/someone would have to feed her and NOT packed a syringe. What a bizzare feeling. I walked out the door feeling so empty handed. I had a sippy cup and my bag!
I stopped off at the supermarket (in the car park Nissim kept telling me 'market, car, market'), grabbed the most expensive yogurt in the world and two avocados (these are the only things that Tova is almost eating right now). Then to my mums.
No pediasure, no syringes, no tubes. Just normal human food and eating/drinking implements.
My mother is so proud and impressed by Tova and her sippy cup abilities. We all are.
It is so astounding. I get tears in my eyes watching her take her cup in two hands (with no help from anyone else), tip the cup up and have a big, long and glorious drink.
She loves coconut water/juice. She drank the entire sippy cup of it throughout today!
We are all a bit sick still, Nissim is snotty and coughing, I am run down and coughing, Tova still a bit snotty and Yuval has managed to escape it entirely!
Tova was supposed to have surgery today to get Gromits!
Yesterday she woke up with a cough, Yuval and I took her to the G.P to get their opinion about the forthcoming surgery. The Dr initially said that Tova could go ahead with the op, but then decided to play it safe by recommending that we postpone it.
I spoke to the hospital and they recommended that I bring Tova in to see the anesthetist in the morning to get his opinion. So, I got up at 6ish this morning, dragged sleeping Tova out of bed at 6.50 and drove to the hospital. The anesthetist said that it would be better to play it safe knowing Tova's crazy medical history. Surgery got canceled.
Now we are back on a waiting list. *sigh*.
Tova is a bit sick with a cough, she hasn't had a temperature but she is almost completely off her food! I haven't lost my mind yet. I usually do when Tova doesn't eat. Perhaps I am feeling 'OK' about it because I am 'getting used to it'?
She even won't eat for Yuval. He has been really good and trying to help me get her to eat.
However, she is drinking kind of enough. I guess it is almost enough. I might give her some electrolytes later. She is sleeping now. Sleep is the best thing for her at the moment and she has been doing lots of it during today and yesterday, not so much over night, which means I am exhausted.
Nissim has been at mums since yesterday morning. He dragged my mum out the door yesterday! He didn't even say good bye to Yuval! He is so funny. It was cute to see him waddle off to the car, he looks just like a person.
Big Fat Tova
Yuval and I were looking at Tova today and commenting on how 'fat' she looks.
We had a big day celebrating the collective 3rd birthdays of Tova and her Premi friends at RMH. Tova and I also wandered around the supermarket and did general playing.
Yuval hurt his back this morning and is out of action, he didn't even make it to work he is suffering so much. And omg, please someone call or email him and offer him some sympathy, because I have run out of nice and helpful things to say.. hehe. Men and pain are a funny mix!
Nissim had fun at the Premi party eating cake and dancing. Have I mentioned how cute he is? He is so very cute!
After bath time this evening I weighed Tova.
Now, first to note, Tova isn't constipated.
Secondly she is 9.1kg!
I had tears in my eyes! FINALLY 9kg.
Now I need some time to let 9kg sink in, after I spend some time celebrating that, we start out next fight to get to 10kg!
What an amazing little princess. She is so fat! ;-)
Tova started excepting the sippy cup being in her mouth and sealing her lips around the 'spout' AND swallowing.
Now she will pick it up herself with two hands and tilt it up so she can have a drink.
It is completely amazing to watch. The people at her Thursday playgroup were telling me how impressed they were yesterday. I had tears of pride and amazement in my eyes. She is really learning allot about food and being able to take control.
She does like it when someone helps her to drink, by holding the cup with her, but she is totally capable herself. Unfortunately she isn't drinking much when she does it, but it is a fantastic first step!
Also, when I am feeding her and if I am not doing it fast enough, she reaches out for my hand to tell me to spoon her another mouthful.
We had a play pic nic today with a little boy called Ash. The family are doing netcoaching and naturally finding the wean difficult.
So we sat down on the kitchen floor and food went everywhere. Ash ate very well which made is mumma very happy (and me happy too).
Nissim was very impressed by the play picnic and Tova actually picked up some food and didn't drop it right away, and in actual fact put a chip to her lips for a few moments.
I think Yuval and I should get it together and do play picnics often! We don't have to have junk food, just normal food will do. I think it will help Tova progress to the next stage of eating! I would love to see her chew! Up until now Tova just seems to let the puree drip down her throat! So, chewing would be a milestone!
Nissim is talking in almost sentences. He can count 1, 2, 4, for some reason there is almost never 3. He is making sense with much of what he is saying, but still talks in that georgous nonsensical 2 year old way. It sounds so cute. He is so cute!
Tova is eating well at the moment. We do need to find a way to get her to drink more volume. But for now, things are good! I am looking forward to the 9kg mark. Perhaps we shall have a 9kg party when she gets there!
Tova is able to suck from a sippy cup!!
She doesn't drink very much, but she is able to do it!!
I weighed Tova the other night. First I put her on the scales with her clothes on. I thought if she was tiny with clothes on I wouldn't have the courage to weigh her naked.
Well she was over 9kg with clothes.
8.6kg naked! Thank god we are maintaining her weight again. I am so looking forward to 9kg and above, it can't be too far away now, can it?
Tova has been eating so well the past few weeks. She eats more than Nissim I am sure. It is hard to know exactly what she eats, but for example, this morning she ate, 2 weetbix with milk and water, plus half a peach, half a kiwi and 2 scoops of pediasure! PIGGY!
I think Nissim weighs about 10kg.
The Graz team are thinking about visiting Australia next year, that is going to be fun and very interesting. I hope the Australian medical world listen, learn and follow!
The RCH are weaning a baby using the Graz method in about 2 weeks!!
The past 15 or so days have been filled with birthday celebrations!
This little Sibony clan now has a 2 year old and a 3 year old!
Happy Second Birthday Nissim.
Happy Third Birthday Tova.
We had a combined party for Tova and Nissim. We even had a blow up jumping castle in the lounge room! It was great fun!
There were two birthday cakes, one pink and one blue. Tova isn't ready to eat cake yet (unless I puree it) so she didn't have any. If I remember correctly she did taste the icing! Yumo!
We had Tova's birthday brunch at Uncle Marks restaurant, he was away for Nissim's birthday so we couldn't do it for his this year (we have done that for the last 3 birthdays). Tova had a babychino, yoghurt and some vanilla slice birthday cake. However by the time the vanilla slice came out, she was pretty over it all and wasn't hungry enough to eat more than a spec of it. Even Nissim was over eating by that stage!
Perhaps next year she will eat 'real' birthday cake! It was a great brunch and I don't mind about her not eating cake. Cake is cake!
Everyone has been healthy and happy for the past two or so weeks. Tova has been eating really well. I still haven't weighed her, and our scales are broken anyway, so I can't even if I did get up the courage!
Today Tova went to see her PEG surgeon. This time it was the one that actually did the operation on Tova (the PEG and the fundo), we hadn't seen her for about a year. She was astonished to learn that the PEG was out and that we had been to Graz. She reacted in the exact way that I needed her to. Excited, happy, interested! It was a fantastic appointment. She hadn't heard of Graz so I left her with a bunch of information to read! I hope she spreads the word. I think changing the entire medical world all over the world is going to take some time. It shouldn't, but it will! With Austria leading the way!
The Sibony household is a happy one, with lots of fat people eating as much as they can! I hope it stays that way, at least for Tova! With summer coming up it would be nice if I could demonstrate some self control.. :-)
So this morning started out as a normal morning. Kids and I got up and had breakfast. Yuval left for work at about 5.30am, so it was just me, the cats and the kiddies.
We got dressed and headed off to the gym.
The kids LOVE playzone! They had a good session, I watched TV and pretended to work out on the bikes and cross trainer.
After my show was finished I went in to get the kids. Nissim was showing off his new trick of jumping on some big blue cushions. He fell off!
He didn't breath, went blue and all limp.
By the time the ambulance came he was almost normal and very hungry!
They offered to take him to Monash, I declined. They gave me tips on how to watch him for concussion over the next few hours.
On the way home he fell asleep in my car. I put him in bed when we arrived home and checked him every few minutes. I was so worried that something bad would happen. My mum came over and took over being neurotic checking Nizo every few minutes while I fed Tova.
He woke up a few hours later in a beautiful, smiling and laughing mood. OH THANK GOD!
What a scare!
Tova was such a good girl during all of it. She wanted me to hold her but was very well behaved when she was told that I was busy with Nissim.
Thank god Nissim is fine.
I think he went blue more from holding his breath than from knocking his head. I have seen him hit his head much harder in the past and nothing happen.
A bunch of 2 year olds
Nissim turned 2 the other day! He wasn't supposed to be born until October, but here he is, an August baby!
Tova is also 2, at least she is for the next few weeks (she wasn't due till December)!
My mum has been teaching Nissim how to eat with a spoon by himself. I have been to lazy and just let him eat with his hands.
He is getting good at spoon feeding himself!
Tova has been eating well for the past few days. She is still incredibly thin! She was thin on the tube too, so, there is no winning solution.
The house is happy and healthy at the moment and filled with all these two year old toddlers!
We are having a birthday party on Sunday, one blue cake and one pink cake. It is incredible to think that Tova will be 3! I remember sitting by that bed in NICU, days turning into weeks, weeks becoming months.. It was a LONG time to be in hospital!
My little Machine
Tova ate so well today at lunch and dinner.
She wasn't the best drinker, luckily I add water to all her food or she would dehydrate!
For lunch today she ate two eggs, some baked beans and rice!
At dinner she ate rice, vegies and avocado. When I made her bowl of food I thought to myself 'I should take a few table spoons out, she will never eat all this'. Because I am lazy, I didn't take an y food out and Tova ate it ALL!
Nissim has been a good boy mostly today. Things are still frustrating him, such as getting lids on and off containers, not being able to reach things that are up high, not being able to do his zipper up on his jacket and so on.
I think Nissim is missing my mum who has been working full time for the past few weeks! Normally they spend at least one full day together. At the moment it is ZERO!
Tova is eating well so I am feeling less stressed thank god!
New Site Home
Welcome to the new Tova Sibony site!
Tova has been eating well over the past couple of days. It is a huge contrast to last week, thank god!
I haven't been giving her as much or any pediasure, so she is eating more. Pediasure makes her very full. I have been adding stage one formula to her food and giving her lots of water in between. She is so happy and full of life!
Nissim has been very frustrated with the world of late. He needs words, actually he needs sentences! They are coming, but not quite there yet. I am trying to get him to understand that instead of crying and fussing, he should use words.
It seems quite crazy to think that he will be 2 in about a week! That is just crazy talk! Wow, and Tova will be 3 in a couple of weeks. How did all this happen?
So, life is good at the moment.
We are all eating.
Horrible 10 Days
The past 10 days or more have been horrible.
Tova went from eating not much to eating nothing then back to eating not much.
After her breathing became laboured we took Tova to the doctor. She had an ear infection and bronchitis! No wonder she wasn't eating.
Nissim also had an ear infection, so both babies were put on Antibiotics. They are on their last couple of days of the antis and are both SO VERY MUCH BETTER!
Last Friday a friend lent me her probey thingy that reads the oxygen levels, Tova was sitting down around 90, so I took her to the hospital, once we got there she got up to 96!!
I took her straight home! It felt great to have made it for more than a month without needing to be in hospital! It felt great looking like an idiot worried mum even!
Nissim was absolutely revolting while he was sick. Crying, complaining, crying, complaining, it was so hard to deal with him.
Thank god he is back to normal now.
I was also sick during the last 10 days, which made everything harder. Again Yuval didn't get sick!
Tova must be some very scary low weight by now. I am too scared to weigh her. Last weight about 2 weeks ago was 8.3kg.
I am looking forward to bigger and fatter things in the coming months!
Tova has been eating very well for the past two days! I am happy when she is happy.
Perhaps the sickness for the winter is over? I hope so. This has been our worst! I think it must have something to do with the kids being so much more social this year. Well I am going back into my hermit shell for now!
I seriously didn't cope well over the past 10 days. But things are looking good again now.
Seriously, why is it so hard? I don't find it hard to gain weight, I don't even have to try nor eat much. Tova on the other hand can eat more than Yuval and still lose weight.
I don't weigh her often because I prefer to judge her health by her over all demeanour. But when I do weigh her I expect to see positive feedback like GAINING ANYTHING, even 1 gram!! ffs!
She is 8.3kg, we should be hitting 9kg now dam it!
My brain hurts.
After completely freaking out I wrote to Graz, they have calmed me down for now. Everything MDS says makes sense. I am so relieved to have her feedback.
I have gone from very worried to not so worried.
But I would love to buy my soon to be 3 year old some clothes bigger than size 1!
I feel quite drained. This is an insane emotional and physical journey.
I found Tova's PEG the other day, it didn't upset me or flood me with bad memories, it made me feel happy, I wanted it back in her! Scary!
And I don't really want it back in, I just want her to get FAT!!
When I think about it, the PEG feeding wasn't making her put on weight either..
Tova is happy and healthy in her actions. She has started being a little bit too clingy with me though.
Nissim has been a really horrible child since returning from Tassi. He seems to wake up in a bad mood and stay in it until he goes to bed at night. Maybe teeth? Maybe frustration, who knows.. He is 9.4kg weighed today.
Personally I am feeling a big flat this week. And today I have been feeling dizzy all day.
But this isn't about me!!
Tova had a hearing test today. She has fluid in her ears again, so Gromits here we come. She is booked in for early September.
Tova hated the hearing test as she hates dark spaces (I can't park the car in an underground car park if Tova is with me). She cried so much and was so agitated I almost walked out.
After about 10mins of absolute distress Tova noticed a highchair in the corner of the little soundproof booth and asked to go in it. Once she was in the chair she was happy, but totally failed the hearing test.
I am fine about it as I know it isn't permanent and there is something we can do about it, and we are going to do about it.
I hate having to use the ear plugs for every bath and making sure no water goes in her ears. But at least now she is happy to sit in the bath, last time she loved to lay down in the bath. It is just a hassle dealing with the plugs.
Nissim has been a grumpy bum for the past few days, I think he is getting frustrated with the world the more he wants to do things but can't yet.
Vicky and Jessy (my brothers beautiful children) and their parents came over today. They are so gorgeous. It was lovely to see all those cousins playing together.
Tova is eating fine. I haven't weighed her again since the other day when I nearly fell over backwards because she had LOST weight. I am pretty scared to weigh her now. But I think it is important because if she gets too low we will have to think of some solution. Perhaps I will weigh her in the next few days.
The tube is out but the battle is ongoing.
Ups and Downs
I am pretty over the ups and downs of it all. But I know there is nothing I can do other than keep on keeping on, and I do it happily.
She felt so heavy this evening so I thought I should weigh her. 8.4, back to the beginning, and I don't even know why.
I am glad the brother in law is a chef as he understands food he gave me some hints on how to make her fat again. Thanks Mordi.
Nissim is not eating and has been a bit grumpy for the past 4 or 5 days. He has had a cold. He woke at 3am and didn't go back to sleep this morning, that was fun.
Tassi was good, the plane trip back was easy enough, I would do it again for sure. Both babies like sitting in their seats. Nissim sat on my lap for landing and Tova sat in the seat by herself. He really enjoyed looking out the window when we got quite low and thought landing was really funny.
I am very proud of my kids, they are so strong and happy. I love them. GROW TOVA!
My little jet setters!!
Wow that was an easy journey!
A stranger man helped me carry Nissim up the stairs onto the plane (we had to walk along the tarmac and up the stairs to the back door). It was really nice of him to help me, the plane people sure as hek weren't going to help me. I was carrying both babies and a bag..
Grandpa and Savta Debbie drove us to the airport and stayed with us until the plane left, so that was pretty easy too.
On the plane I put Nissim into his seat, did the belt up and he didn't once ask to get out for the entire flight. He did however figure out how to undo his buckle himself, clever little dude.
Tova sat on my lap and was happy reading books and watching the DVD.
The DVD player was the saving grace!
Nissim and I ate everything in the world on the plane, cheese, challa, muffin, crackers, potatoes, chicken and orange juice.
No ears had major problems.
It was just easy.
Nissim seemed to recognise poppy (my dad) when he met us in the airport, which is nice. He has also perfected saying poppy, and if you ask Nissim where poppy is, he points at my dad... I LOVE IT!
The airport dog was as cute as ever, Nissim wanted to play with him and he wanted to play with Nissim, but the puppy was working, so they just watched each other.
Dad and Tova went for a ride in the tractor once we got to dad's house, she loved it. After a while dad passed her back to me and she asked for more, so he drove her around for about 15 mins more. Hilarious.
Tova has a bit of a green nose today, I hope it doesn't become anything.
She is still eating and is happy. This morning she had a cough that has now gone, but it was hard for her to eat breakfast. The rest of the day, eating has been good.
Dad has too much chocolate in his house.
Tasmania is so beautiful! Tomorrow I hope to be woken up by the sound of bouncing wallabies outside my window.
Tova is eating well and there isn't much to report, which is of course, fantastic.
There isn't anything in the house for her to eat today, so she is living off rice milk and breakfast cereals..
Tova, Nissim and I are going to Tasmania tomorrow, and I am having trouble figuring out what to cook for just one day. Normally I make a big lot of food for the kids that lasts for a couple of days at a time.
I booked the tickets to Tassi a month or so ago because I was bored.. Hehe, a bored housewife with too may frequent flyer points. Yuval has to work and it is boring for him anyway. I spend time catching up with old friends. I will also be meeting Karelle, the founder/owner/creator of the tube fed kids forum.
Of course we will be spending time with my sister and her daughter too. The cousins love each other, they are so cute to watch. Last time we spend about 6 hours just staring at them all playing together.
It is going to be a fantastic trip, I am not so sure about the plane by myself, but I feel confident that I can do it, I am the mumma after all. My biggest concern is all the ears. Thankfully it is a short flight.
Packing for a flight again, I hate packing and my suitcase smells like mould from being in the stinky shed.
Returning to 'Normal'
This morning Tova ate breakfast like 'her normal self'. She had a good portion, however she didn't want much to drink. I always put water in her food as there isn't enough time in the day for her to eat and drink everything she does, plus more water.
She is constipated again! I am trying to give her a dose of 'softner', but she doesn't want to drink anything.. I will keep trying throughout the day.
My friend Sharon is in Graz at the moment on day 3 of her wean. Her son doesn't have the tube, but the doctors here are saying that is the next step for him if he doesn't start eating more. Good luck Sharon!
Another mumma found me last night. Her mum found the notube group on facebook! YAY. The mumma has already contacted Canberra today for the funding. Good luck! I will help you as much as I can with the application. I am so excited for you!
Nissim is talking more and more real talk mixed with so very much babble.. I am going to miss his crazy babble talk when he starts to talk for real..
Everyone is a bit sick
Everyone (except Yuvie) is sick. First it was Nissim, then Tova and now me.
Nissim is still coughing and has a runny nose, he is also a bit grumpy. Tova is coughing and is grumpy, I have lost my voice and am grumpy.
The three of us are tired and sleeping more than usual.
Neither Tova nor Nissim are eating much at the moment. Tova hardly ate anything today and fell asleep this evening before dinner/drink time.
She took one look at the high chair that Yuval wheeled in to me and master chef, and curled up on the couch cushions (she was kind of squashed between two of them in the crack, very cute) shut her eyes and went to sleep.
Nissim hasn't eaten much for the past 5 days, but he is still happy enough.
Both babies have needed Ventolin at various stages. I am amazed at how effective that stuff really is and it is instant.
I haven't left the house for 5 extremely long days and have cabin fever.
Today was easier as I was feeling a bit better. I still feel pretty crap, but can function.
I think tomorrow I will have to take the kids to a park so that they can breath some fresh air. They also have cabin fever, Tova was so bored yesterday she fell asleep.
Tova not eating isn't bothering me as much as it has done in the past. I think because I know (I hope I know) that she will eat again once she is feeling better.
Nissim is olive obsessed. He loves them. He calls them eyes and could eat about a kilo in 5 mins if I let him.
Tova had an appointment with her Pedi today. It is the first time she has seen him since we have been back from Austria.
We did have an appointment with him a few months ago, but he wasn't there due to falling off his bike and fracturing his hip in 3 places.
I am so happy he is back. He is lovely!
He was so positive and happy about Tova and her eating. He has also become interested in the tube weaning developments in Australia. I am excited that he has been inspired/interested! And he read the blog while we were away!
He weighed Tova, measured her length and head and said she is in proportion... But she is small, and perhaps if she had been born term she wouldn't be so small. Perhaps the bleeding on her brain while in NICU (due to being born too early) has effected the part of her brain that says 'grow'.. maybe she is just small like a Sibony. It is good to be small!
Overall he was happy with everything about Tova! He said she doesn't look like skin and bone so she must be eating enough! Wow, that makes me feel so overwhelmed to hear him say that. There is so much in that. Wow, Tova eats, it is still almost unbelievable.
I watch her eating mouthfulls of food and I still scratch my head wondering about the mystery of the vanishing food. I mean, can it really be going into her tummy? Well apparently yes it can and is. She is amazing.
Nissim is saying more and more words and has started to put a couple of words together like 'aba up' and really understands the words 'more and mine and uses them lots. He is adorable.
He has some new shoes fitted by the professionals. They are great shoes, thanks mum!
He and Tova are getting really good at playing row row row your boat together. They hold hands and move back and forth, Nissim also sings row row row (only those three words, hehe).
We are lucky to have such good children.
I have introduced fish into Tova's diet. She loves it.
T is back to eating a variety of foods and eating well. Life is so good when Tova is eating.
Tova is also drinking much faster and gets very excited when she sees her drink. Chocolate pediasure is a favorite at the moment, oh and water.
DVD's aren't working too well, so back to singing it is.
We aren't using the tumble forms anymore, Tova is eating in the highchair now.
The appointment with the Dietetics department was interesting.
Extremely different, they didn't even ask Tova's weight. From one extreme to the other.
I got what I wanted out of the appointment and left feeling strong not deflated.
There was no mention of tubes, more dairy or more anything.
At first they asked me lots of questions that I couldn't answer like 'how much food does Tova have a day'. After getting quite frustrated about not being able to answer (and not caring nor understanding why they were asking me), I started asking questions.
When I was feeling a bit confused or insecure had a look next to me to Tova's physio and felt reassured and strong.
My questions were all answered. No extra crap was talked about, it was good.
They also signed me up for the discount pediasure supplier! Fantastic.
Yuvie, the kiddies and I went on a holiday last weekend. It was our first holiday not visiting family.
We stayed at a beach house, with the back door opening onto the beach. I miss the beach.
Nissim took one look at the ocean and said 'Bath'. Clever boy!
Nissim isn't a fan of sand and found it a bit scary to walk on.
Everyone has been well and happy.
We have an appointment with Tova's Pediatrician coming up next week. It will be our fist time seeing him since returning from Austria. It should be interesting. Unfortunately his beautiful receptionist isn't there anymore, I always loved seeing her at our appointments. The new girl/guy has lots to live up to.
Tova doesn't seem to be putting on weight. I am not sure if she is growing taller (surly she is).
Yuval and I feel we have to get on top of her gaining, yet we are finding it hard to work out how.
The dietitians and doctors are apparently concerned about Tova's weight gain, yet they don't tell us how to fix it.
Next week we have an appointment with the dietitians, perhaps we will come up with a solution. I have new ammunition, I am going to take Tova's physio with me to the dietitian appointment.
Tova's physio has the same goals and agenda as Yuval and I!
We all want Tova to gain fat, but not for fat's sake! We want her to gain weight to be able to put on muscle bulk, stay healthy and develop!
I usually feel too exhausted emotionally to go to these appointments, the last one Yuvie went alone.
I am feeling stronger now and I know what I want to ask.
I have some clarity and confidence after meeting and talking with parents and specialists who feel the same way as we do in regards to T putting on weight.
So, at any mention of retubing, I will know what to say and not have to argue or feel like I have done the wrong thing (by removing the tube).
I met a few new people over the past week.
First one was a doctor in the ED, she told me that she felt Tova should have the tube reinserted! Yeh right. That conversation was over before it began.
Second new person was a student doctor in the ED that was absolutely lovely. He admitted Tova to the ward and came to visit us on his day off the next day.
Third person was the doctor on the ward that didn't mention putting the tube back in, but did talk about finding a solution to Tova gaining some bulk so that she could put on muscle tone! She didn't want Tova to be fat for the sake of being fat. She even mentioned that being over weight would hinder her development! I have been saying this all along, so it was nice to know that one of 'them' is actually on the same page!
Fourth person was a therapist fitting Tova for some equipment who knows about Graz and babies like T. She mentioned that we should talk to the dietitians about low GI foods! She gave me the right words to use, it was as if she un-jumbled all the confused and frustrated thoughts in my head and put them together like a perfect jigsaw picture! Tova's physio was there at that appointment!
Tova had a virus, and only spent a night on the ward. One of her friends from NICU was in there too, so we said hi. They went home the day after us.
The doctors said it was unlikely that Tova had aspirated and that since we had all been sick she most probably had the same virus as the rest of us.
She had an ear ache and head ache, and her fever got to 38.
She had a drip with fluids and antis and her mood changed dramatically from terrible to wonderful. She wasn't impressed about being trapped in the hospital cot and made me take her to the play room over and over again!
It would seem that she knows her way around on that ward!
We are all feeling much better and I am hoping I get to go back to the gym next week! I miss the Playzone girls!
Little Master Nissim wants some Blog Time!
Over the past two or three weeks Nissim has been a little 'off'.
One night he vomited before bed (VERY unusual) and wouldn't eat the next day.
He vomited again the next day and slept until about 11am only to sleep again from 1 until 4 at Savtas house and bed again at 7ish.
He didn't vomit again or act sick, no temp, nothing, but he didn't eat much for about a week or two and then got a cold (caught from me) a couple of days ago.
Yesterday he woke up crying. He was trying to play and talk but all he could do was cry, I cuddled him.
Once the crying stopped I was able to listen to him breathing.
It was like watching Tova a few months ago. He was using his entire body to breath in weazy breaths.
The boys went to the doctor and I took a 7th day non eating Tova to the supermarket to buy her free range chicken and rice.
I got home before the boys and started cooking for Tova.
Yuval rang me to let me know that they were on their way to the hospital as Nissim wasn't doing so well and the doctor said that he was only going to get worse!
Luckily it was Yuval's day off work yesterday (not so lucky for him) and luckily Nissim was only in for a few hours then sent home with some steroids and ventolin.
It is a very catchy viral infection!
We are hoping that Tova doesn't get it.
Tova spent yesterday again not eating and even managed to do 3 or 4 vomits. I remember the days when that was normal life, 3 or 4 would have been a good day!
The strange things is, Tova doesn't seem sick, no temp, not sad, just vomiting. She even wanted food and drink not long after. Yuval and I are scared that her fundo is coming undone!
Last night Tova went to bed hungry, I gave her some electrolytes and she cried herself to sleep.
This morning she ate very well even grabbing my hand holding her drink syringe and pushing it to her mouth, thirsty! No vomits.
She then had lunch and no vomits
Little T is now sleeping in her bed here at home and little N is with my mumma also sleeping in his bed at her house.
I am feeling happy today. My mood is a reflection of Tova eating, today is good!
Nissim seems much better today.
I Hate Food
I am completely over everything to do with food!
I hate that I eat when I am bored, happy, sad, feeling thin, feeling fat, feeling full, feeling hungry, I hate that I don't fit into my clothes after almost 2 years. I hate that Nissim won't eat what I make for him, I hate that Yuval jokes by saying he won't eat it because it tastes like crud, I hate that Tova won't eat, then will eat, eats a little, eats too much, eats the wrong things, vomits. I hate that I am not a vegan anymore.
I hate that when Tova goes to creche she doesn't eat enough and I feel guilty about saying something to them. I hate that when I do say something it falls on deaf ears, I hate that even if they are listening to me, there is nothing they can do, they are doing their best. I hate that feeding Tova is so consuming for her and for everyone involved.
I hate that I am so worried about Tova gaining enough weight, eating enough, getting enough of the good things to help her brain grow so she can be as 'normal' as she can.
I hate that she fights me.
I love the easy days, when she wants to eat and eats well.
I haven't had a good eating day with Tova for ages. I have been so worried that Today I was forceful and fed her slowly over an hour, even though I could see she wasn't interested. She vomited. POINTLESS!!!
Lately I have been wishing for a tube!
I don't even know what enough is or if I should be worrying. I just know she isn't eating as well as usual and she can't maintain her weight eating bugger all every day.
I am going to buy a portable DVD player for her to take to creche, perhaps that will help her eat with them. But perhaps I am just wasting money I don't have.
Today has been a frustrating day. This entire week has been frustrating.
I am happy that Tova is able to eat. I am frustrated that it is so hard to get her to eat.
I hate her low muscle tone, I hate that she can't self feed, I hate that she is broken. I hate that I broke her!
I love her.
Tova has started to eat again, at least more than she was eating last week. She still is eating about half the amount she had been eating.
To make things even more complicated and stressful, she has now decided to stop drinking. Not completely but very close to completely.
However, interestingly she is doing more poo and is still very happy. So, go figure!
The other day Tova did the best kaka in the universe, I was so proud. I wanted to walk up and down the street waving this incredible accomplishment for the world to see. But don't worry, I controlled my excitement and saved the crazy proud ranting for Yuval (and everyone reading).
Tova is trying so hard to catch up to her very well muscle toned brother. She would love to run around and chase him and she is even trying to pull herself up on furniture. She just isn't strong enough yet. But with each try she is one step closer.
Today is a particularly dull day, hubby at work, kids bored and me not even showered yet (10am). Shower time and then park or we will all suffer serious cabin fever.
For the past week Tova has eating almost nothing. It is terrifying to think what her weight might be now. But as Yuval pointed out to me last night, there is no point in weighing her. Weighing her would only cause us to be stressed.
Tova isn't 100%, so she isn't eating 100%.
Tova hasn't had any other symptoms, no runny nose, no fever, no rubbing at her ears etc. So, we have no idea what has been up with her.
However, today little T seems to be eating much better and her nose seems much clearer. Perhaps this is the end of the sinus crud.
I have been feeding her the most fattening food in the world over the past week (and food that we know she loves such as chocolate pudding), in hope that the little bit she has been eating will help maintain her weight.
One of the foods that I add to everything is clotted cream (newly discovered very fattening cream), but because her PEG site is leaking a little bit, it is really smelly. Gross!
Maybe tomorrow I can go back to feeding her without adding so much dairy.
Daytime sleeps are also something Tova has rediscovered, which is nice. Both babies sleeping from about 12.30-1pm till about 2 or 3 (and nissim sometimes to 4). Tova is always ready for bed by 7.30-8pm and Nissim 6.30-7.30pm. It is a really nice sleep life right now!
Tova is loving her creche on Thursdays. She came home in the most amazingly splendid mood last week. It makes all my guilt disappear when I see her so happy.
I think she enjoys Monday and Friday as well, but it doesn't seem to have quite the same impact on her. At least not yet. Fingers crossed that Yuval and I made the right decision to change to center based rather than home based therapy for missT.
Nissim has started to wear a David Beckham style hair do (ponytail), which makes him look even more girly. Oh how I look forward to him turning 3 and I can chop it all off!!
For the past 4 or 5 days Tova has been breathing strangely, not a lung thing, it sounds like she is snoring. Yuval and I are thinking it could be a sinus infection.
We took her to a GP on Sunday, who gave us a prescription for antis. We waited till Monday arvo to start them in case it went away. It didn't.
So now it is Wednesday and she is still snorting for each breath which makes it hard for her to eat.
There have been a few quite frustrating feeding sessions where she wont eat anything. And drinking, especially yesterday when it was such a hot day was almost not happening.
I hope these antis work soon.
How frustrating to meet a hurdle at every corner!
I also think Tova has lost a bit of weight (her back is feeling skinny again) which is a bit scary too. And unbelievable considering the amounts of food she had been eating up until four days ago.
This morning for breakfast she ate a good amount and the food had all sorts of things added for fat, such as pollyjoule, formula, apricot oil, and more..
Nissim is doing well. He is a professional shoe wearer which is very cute. He even brings them to us and demands we put them on him.
Tova and I went to see her PEG surgeons last week. They were surprised and happy about there being no more PEG!!!
It felt great to lift up Tova's top and show them no PEG!
We have another appointment in 3 months to decided if she should have it surgically closed as it leaks a little bit now.
Tova hasn't put much weight on in the past week or so. Yuvie and I are back to adding oils and fattening forumla to all her food.
We have a happy little Tova who is enjoying her food and is able to eat huge amounts in one sitting.
I still haven't measured her food since that day I stopped and am loving not stressing about mills!
I watch this little girl eating each meal, each day and am amazed.
She has come so far!
We are so lucky to have her.
We have been doing acupressure on her face quite intensively for the past two weeks and it seems to be helping her get stronger tone in her lips.
Her development seems to be going ahead in leaps and bounds. And she is so happy!
Nissim is understanding everything so we have to watch what we say around him.
He has become a little more fussy with food. He loves tomato and olives. He could eat an entire jar of olives if we let him (too salty for such a little boy).
Tova loves lots of different foods and isn't too difficult to cook for. Her favorites are things like chicken with vegies and red meat (her daddy cooks that for her).
I got a new juicer from ebay the other day (ours was just too old and missing parts) so Tova is having fresh juice every day. It feels good to give her such healthy foods.
Eating isn't taking as long anymore. I think a meal takes about 15 to 20 mins and drinks about 10mins. Still there is something going into her every two hours.
I look forward to the day she can self feed, when I can just hand her a piece of apple or banana and walk off!
We will get there. And I am in no particular hurry.
Yesterday Tova and I went to MMC for her appointment with the surgical team that did her PEG.
I am pretty sure I didn't tell them we were going to Graz and I was looking forward to showing them the site where the PEG WAS!
Unfortunately after waiting for over an hour and a half Tova and I had to go.
We have re-booked and will see them in a few weeks.
Tova and I went to her next appointment 15 mins drive away (after a quick stop at home to give T a drink).
We have found our Australian Eva!!
We have been seeing this Physio for a while (before Austria). But it wasn't until yesterday that I realise how truly amazing this lady really is!
We have always thought highly of her and how she thinks outside the box, but now after Austria and how they got us to think outside the box too, I really see the brilliance in this therapist!
She does acupressure with Tova and has similar philosophies to Eva.
I love that she has a different approach to our other physio, it means I can choose what I like.
Everyone knows everything and no one knows anything.
Everything is helping Tova! There is no right way or wrong way just encouragement!
Chicken and Matzah balls are still favorites in this house, my mother even made some and delivered them especially for Tova this morning!
Might have to go easy on the Matzah, even Nissim is feeling blocked up!! I think there are only about 5 more days of pesach anyway!
A I can see that there are many hits on this website EVERY DAY! But do I hear from anyone? NO! Feed back would be great. Pretty please!
What a good little princess, she loves Matzah Balls and chicken soup!
Last night was the first seder at mums, there was lots of left overs. Both Savtahs cooked.
Today Tova had pureed chicken soup with vegies and matzah balls.
Later a piece of chicken, a potato, and a matzah ball (pureed).
And even later more matzah balls...
Not so good for the constipation I am sure, but good none the less!
On Thursday Tova was at her play group. At about mid day they rang me to tell me that Tova wouldn't eat nor drink anything. They had been doing a song and dance routine, playing with toys and every trick in the book, they just couldn't get her to eat.
I couldn't rush to get there, as I had Nizo with me who sleeps at about 12.30pm. I rang Yuvie (he is working nights at the moment, so he is around in the days) gave him Nissim and went to the play group.
The entire time I was calm, trying not to think about her not eating enough that day. There was nothing I could do anyway, so why worry?.
I am becoming more relaxed about her eating even though I generally do measure everything. I guess I measure it so I know what she is eating, but don't stress too much if she doesn't eat it. I just like to know.
I slowly made my way to the play group and gave T a suppository as I think she isn't eating because she hasn't 'been' for quite a few days.
When we finally got home and after a great big poo, she had a big drink of water and a bit later something to eat.
Today she is eating again, and eating good amounts. I haven't even measured her food today, this is a big step for me! I have to learn to trust her, she will eat what she needs to eat!
Yuval and I weighed T this evening, she is a huge 8.6kg! What a fatty!
Her cousin Lev, who is 6 months older than her (corrected) is 10kg with perfect muscle tone, so, in comparison, we are very pleased with Tova's weight. Lev and Tova are quite possibly going to be short little ladies.
Nissim is still teething with too many teeth at one time and is having a nightly dose of panadol so that Yuval and I get some sleep! Other than that, he is such a cute little man whom Tova is obsessed with.
Eating, Dancing, Singing and TV
My beloved routine is coming back to me!
Last Friday and Today (Monday) I dropped Tova off at her center based therapy around 9.30am and Yuval picked her up at 2pm.
Nissim and I went to gym both days. It is so nice not having to get the pram out of the car. I just pick Nizo up and carry him across the road where he continues to walk the rest of the way into the gym building.
I love that he is wearing shoes now!! Thanks mum for months of work to get him to wear them!
I am still unsure if the center based therapy is the best thing for Tova. She does enjoy being there, I am just unsure if they are giving her the best therapy possible. It is such a hard decision to make.
Tova is eating well. She eats a huge variety of foods, Yuval and I are so impressed with her! We haven't weighed her for a while, but her face looks fat!
We use the spoon 100% for food and are working our way to using a cup for the drinks. It is great to see her eat with the spoon and that tumble forms chair is fantastic. Eating still involves the entire song and dance festival or 'Baby Einstein'.
Tova is absolutely obsessed with Nissim and cries every time he leaves the room, she used to cry when I left the room! Not anymore!
She is getting frustrated that she can't keep up with him. I can see that her low muscle tone is bothering her, which is a good thing because she is so motivated and therefor getting more and more tone, equaling more and more ability!
Nissim seems to be getting every possible tooth all at once and has been sleeping terribly. Yuval and I are so tired.
Tova has an appointment with her surgical team next week, I am looking forward to their faces when they ask to look at her PEG. G - O - N - E!!! Gone, Gone, Gone!
In the past we have only had very nice doctors for those appointments, so I am excited not scared about their reaction. I have a feeling they will be proud, respectful and happy for us!
It is a strange thing with all the growth charts and doctors needing kids to be at a particular stage to make the doctor happy.
When our daughter was born we didn't know anything about babies, let alone premi babies and we trusted that the medical team did. We followed their instructions and fed Tova the amounts they recommended etc.
If only we knew then what we know now! I get so sad about it. I know there is nothing I can do about the past, but it wont happen again that is for sure!
Not once did the medical team ask us about our family height, weight etc. Most of them only met me and not my husband, so they had no idea how tall or short he was either. My husband is shorter than me and his mother is about 4 - 5 foot.
My mother is also short. Actually everyone is short except for me, my father and my brother. My kids have a pretty good chance on being small! But no one ever asked me about that, they just worried when they didn't fit on their charts..
Once we started understanding and feeling confident, my husband and I stopped listening and seeing the team that were over feeding Tova. They were making us feed her when she was clearly full and vomiting! If she vomited we would top her up to replace what she had vomited. OMG, I can't believe we did that. I feel so repulsed and betrayed by the medical world, and myself for not having faith in what I was feeling sooner. Poor Tova.
I did eventually meet a doctor and dietitian that think outside the box. The doctor asked me to find out all measurements like, husbands head measurements, height, family heights etc. The dietitian also took it into consideration, and she also took into consideration that Tova is a Prem.
I still don't care about charts or measurements. From time to time I am curious, but not for any medical reason, just curious, and so we weigh her on our house scales. I also sometimes compare Tova to her cousin who was born the day after Tova (term though). They are about the same size. Her cousin is a bit heavier because she has muscle tone and is a few months corrected older. But all in all they are pretty close in size! To me that makes more sense.
Tova is happy and healthy looking, she eats well and has energy! That tells me lots more than some stupid chart that doesn't cater for individuals!
Ahh brain dump venting, feels better!!
On Thursdays Tova goes to a play group that is almost two carers to each child. Carers consist of OT's, Physio's, Speechies and Volunteers! I love Thursdays because Tova loves Thursdays.
As they have so many carers they have been able to learn how to feed Tova. And as of today she lets them feed her.
(The center based therapy that I was writing about yesterday is on Monday and Friday and they are the ones that don't have enough staff to focus on feeding Tova).
I feel confident that next week I will drop Tova off at start time and pick her up at home time! The lady that looks after Tova is absolutely lovely and most importantly Tova loves her.
This morning Nissim, Tova and I drove to the play group. There was a morning tea for the parents which I attended without the kiddies (they carers looked after Nissim so I could go meet the other parents).
Mum, who plays tennis around the corner on Thursdays came and collected Nissim when she finished her game. They went back to her house for the rest of the day so that he could get some sleep etc.
I waited around till Tova's feeding time and sat back out of Tova's view and watched Karelle successfully feed a not so hungry Tova! I am very impressed! She couldn't get much in with the spoon so resorted to the syringe. But she will keep trying with the spoon like we do.
Now we have to work on getting the other play group to learn to feed T too.
Thursdays are going to be a good day!!
Also, the wesite stats tell me that there are about 80 hits on the site a day. But no one is commenting or sending me emails. Please feel free to write to me anytime!
Before we left for Graz we had a tube fed baby that was fed water and milk alternating every two hours.
She (and Nizo) attended creche at my gym each weekday morning where the most amazing carers learned how to PEG feed her so that I could have an un-interrupted one and a half hour work out.
Both babies LOVE gym creche!
My mother had also learned how to PEG feed and was able to give me time out when I needed it.
Tube feeding was pretty simple and could be done anywhere from in the car to out and about in the pram (I usually tried to be as discrete as possible when in public, but I am sure that from time to time I turned some heads).
Each week we were visited by Tova's therapists, Speech, OT and Physio. Each coming once a fortnight (separately, giving us therapy every week).
Now we have an eating Tova that doesn't let anyone else feed her, must be either sung to while eating or be watching Baby Einstein; other wise she simply won't eat at all.
She has to be sitting in the correct position as to not aspirate and we are using syringes to feed her which can look quite confronting to the public eye.
In addition we have moved from our home visiting therapists to a center based therapy. Three mornings a week I am supposed to be able to drop Tova off at 'school' and leave her there for the greater part of the day. She is, in theory, there to get the best possible therapy available.
HOWEVER, I can't leave her because won't let anyone feed her and they don't seem to have enough staff to be able to learn.
Feeding Tova is pretty much on the same time schedule as it was with the PEG feeding, food every 4 hours with water in between each feed (feeding every 2 hours).
I am not dealing with the transition phase very well, I am however more fulfilled now than I ever was when PEG feeding!
We need to move on from the syringe feeding to spoons exclusively. I am working hard on this and have decided that if she is hungry she will eat from anything ie a spoon! I have started to test this theory and so far so good.
I need the therapists to learn how to feed Tova so that I can have my hour and a half at the gym and feel good about my own body again (I have been helping Tova too much with her double cream and full cream everything).
What does Nissim do in all of this? He comes with me and Tova and then someone has to come get him (or I drop him somewhere in between feeding Tova) at his sleep time. It is usually my mother or Yuval to the rescue if they are around, otherwise he has a horrible day trying to sleep in the pram.
I haven't seen any of my friends since I have been back from Graz because of the new therapy program that has consumed my life and so far given Tova almost nothing.
In addition to my already fragile mind, a therapist upset me so much last week I couldn't eat nor relax for the rest of the day and struggled to get to sleep that night.
She seemed quite threatened by the Graz model that she had never heard of and I had to establish to her that I am not their spokes person and I don't need to defend anything.
This is all hard work. Worthwhile work! We do have allot of support from family, friends and specialists, I am not sure why I let one negative person get to me so much.
I am looking forward to the freedom of having a baby that can self feed with her fingers and or a spoon! Until that day I will have to continue to fight for Tova when the need arises and try to stay focused!
Tova's physio came over today to pick up the equipment they had lent us and to say goodbye. I could see how proud she was of Tova and it was beautiful to see that Tova recognised her and wanted to play physio games with her. She hadn't seen Tova since before Graz, and mentioned she noticed big changes like Tova having more energy, nicer skin colour, more active etc.
We flew back from Tasmania this morning, we had been there for about 4 days. It is a stunning place! We stayed at my dads house. Every time my dad sat down with some food he had a Nissim by his side. They shared nicely! hehe. Very cute.
Nissim and Tova also spent time with their cousin Lilly, they were so funny and cute together. We will have to go back there soon.
Yuval and I went to the other side of the world for Tova and it worked, she does eat. Now to refine the eating and get all negative people out of our lives!
The kids started to get sick on Saturday night. Yuval and I were trying to go out for the first time in probably close to a year and both babies played up. They were acting unusual, I just thought they could sense we were going out. In actual fact it was the beginning of a 2 day 2 night stay in hospital.
Yuval and I eventually did go out and came home at around 11. Tova woke up at something stupid o clock in the morning. She was breathing strangely, so she kicked Yuval out of our bed and joined me for the night (so I could listen to her breathing). Poor Yuvie slept on the couch.
Tova had a fairly peaceful rest of the night with the help of some ventolin.
On Sunday I watched her struggle to breath but remain in very good spirits.
Nissim started to get a runny nose to match Tova's and they both began coughing.
I took it easy not wanting to panic. I bathed Nissim, put him to bed, bathed Tova and took her to Emergency.
We waited in a line for about half an hour and once we got to the counter I said to the woman 'Hi, my ex 24weeker, chronic...' before I could say 'lung' the lady said 'follow me!'.
Tova and I spent from about 7pm to 2.30am in the ER kiddes section (Tova fell asleep at 11pm).
Tova was poked, prodded, listened to, had a lung xray, blood tests and a drip pumping antibiotics was placed.
Conclusion; Pneumonia! They can't be sure if she has it from the virus both kiddies have or if she ASPIRATED.
What a nightmare! It is terrifying to think that the food that we have finally got her to eat and that she is enjoying so much could be making her sick.
We now have a Tumble Forms chair to feed her in. This is a big help as we can feed her in an upright position. And much easier than the highchair.
The nurses and doctors were curious about Graz. Some knew about it and some didn't even know about oral aversion. The head honcho doctor asked if Graz had given us a report for them to read. They hadn't. I think that is a bit unusual, because here in Australia when in hospital we usually leave with about 10 pages of paperwork.
Tova and I are home now. We both slept and slept and slept. It is hard sleeping in a hospital, we made up for it last night.
So, we have been home from Graz for almost 3 weeks. It feels like a lifetime ago that we were there.
I am enjoying hearing from the South African family who have just completed their 3 weeks there and now have a an eating daughter.
Tova's PEG site is healing and becoming a memory. We have had no issues with it at all. Apparently (according to the pediatrician) they mostly cause no issue when removed (contrary to what the PEG nurse scared me to think).
The last few days we have been feeding Tova in her high chair and only from the spoon (except for drinks which are still from the syringe and laying down). It takes ages but it is a necessary step towards normality.
Once we get her muscle tone a bit stronger eating will become much easier.
Singing is still imperative, however, on the odd occasion she settles for us shaking a toy such as bells.
It is still only Yuval and I that can successfully feed Tova her entire meal. My mum fed her about 40 mills the other day and one of Tova's creche ladies fed her about 100mills (from the spoon) yesterday. I can see my freedom coming soon.
Feeding is now about every 3 hours (was every 2).
We haven't weighed Tova at the pediatrician's office, but on the scales at home she is about 8.5kg, back to where we started. We can see that food is going to make her a little fatty! We are happy about this of course!
Nissim is happy as ever and playing very nicely with Tova, the hair pulling stage is over! They really are the best of friends. Tova loves watching everything he does and he is more than happy to entertain her! He is like my little therapist (it gives me a break).
Spoon feeding is the next goal, then drinking from the sippy cup (very hard with low muscle tone).
From time to time I will add updates here. That way I can leave the Graz menu up.
So, we have been home for almost 2 weeks. The first week was spent dealing with Jet lag, even the boys got it this time!
I haven't managed to get back to the gym, I really miss the play zone! Oh and the actual gym bit I guess. It has just been very difficult to get out of the house with Tova eating every 2 hours.
Eating has been good. Tova has continued to amaze us with her love of food and willingness to eat.
Eating is still mostly laying down, head on a pillow and she MUST be sung to or she wont eat anything. We still syringe the food into her mouth mill by mill.
She is eating everything, as long as it is puree. We puree mince, chicken, vegies, oats, fruit and everything in between.
The only issue we have is that she doesn't let anyone else feed her. I was mentally prepared to be trapped by feeding Tova every few hours, but not that she wouldn't let me have a break ever. However, I am coping. I can see the light at the end of the tunnel and I know that this is worth it 100%!!!
We have been to the Ear doctor, Eye doctor and Pediatrician.
Ears are great, no more gromits, I LOVE bathing her without having to worry about ear plugs. That is a big improvement on our quality of life (well bath time life).
Eyes are great too, next appointment is almost a year away!
Pediatrician, our normal pedi is away because he fell off his bike, poor man, he has been on bed rest for a month or more.. Get well soon! His replacement for the day was a young doctor from the RCH. He was fantastic. He also knew about Graz and even pronounced it correctly! He said that RCH are working on getting the Graz methods in place.
Tova weighs 8.2kg! She is putting it back on!
From memory Tova was 8.6ish when we left, got to 7.8ish and is now working her way back up.
We are looking forward to seeing some meat on her little bones.
The PEG site didn't leak and the Pedi says it looks good. It will eventually heal over and just leave a small scar.
Tova's OT and Speechy came to visit this week too, they are so happy for us. They will spread the word about Graz for sure!
Nissim is learning to eat healthy food again. He doesn't mind. I have a jar of Nutella in case of emergencies, but that is just a fancy way of saying, there is Nutella for Yuval and I.
We have been trying to contact the PEG nurse since arriving back from Graz, as there was no way Yuval was going to take it out and I was feeling apprehensive and squeamish.
Eventually we spoke to the Nurse who informed us that we had to wait until after our appointment with the HENS dietitian in March. hmmm
She isn't permitted to take it out without their approval. Fair enough, rules are rules.
It would have been nice for her to do it, but it really isn't a complicated process (I had seen them do it once before when they changed over Tova's PEG).
She was also very negative and sounded a bit angry, but who knows, maybe she was really happy for us (It is hard to tell on the phone). I was expecting that reaction anyway, so it wasn't a surprise.
A bit about a PEG/Button:
It was inserted surgically; they made a cut in her belly right through to her stomach and placed the button in.
There was an inflatable balloon at the end in her stomach and an external base at the other. When not in use it had a little cap and when in use it had a one way valve, so things could only go in not out.
The balloon inside her stomach was inflated so that it couldn't fall out. To take it out all I had to do was deflate it and pull it out (like an ear ring). YUK!!!
So after Yuval and I had a talk to the PEG nurse and she placed fear into our jet lagged minds we got quite down and scared.
But my mind was set on getting rid of it and we had talked to the specialists in Graz about it many times, even emailing with them every day since we have been back. Not to mention the fact that we don't use the button at all.
On the 4th Feb 2010, some time around 6pm I took Tova's PEG out!
I did it, I didn't like doing it and I am glad I never have to do it again.
Tova will be able to crawl and roll and generally have a good time on her tummy without the stupid thing bugging her now.
It should mostly close up quickly (24 hours) and be completely closed in a max of 12 weeks. We have a dressing on it now (from the Graz team).
In addition to the PEG removal, at Tova's appointment with the Ear doctor, he discovered that her Gromits had grown out, they were sitting in her ears and he was able to remove them with no trouble.
He asked if I wanted to keep them, nice of him to ask, because I do keep many of Tova's things, but I declined.
When he took the Gromits out he had a look in Tova's ears and said to me, with a VERY SERIOUS FACE 'I am sorry to say that unfortunately..'
I had tears in my eyes thinking not another operation and he continued 'unfortunately, we won't be seeing much of each other anymore, her ears look healthy!'
HAHA VERY FUNNY DR! So, the tears remained in my eyes, but had changed from disappointment to relief and pride.
I now know that I wasn't imagining it when Tova cried on the plane during take off and landing. Gromits would have stopped all the pain.
Well that is it.
Unplugged Tova (thanks Bec for letting me use 'unplugged', I love it).
We also get to spend our first Shabbat at home with an eating Tova. YAY!