We went to visit my father in law this weekend, although the main purpose of the visit was to introduce Ciara and Enya to Z's grandmother. Oma is a grand old lady of 87, still quite fit and mentally all there. She has loads of other great grandchildren but they are all quite a bit older. The visit went well although I couldn't get a photo of her with them as she didn't want to hold them (she hates photos of herself). It is a 2 hour drive to the little village in Hunsruck where she lives with her daughter (also a twin ;-)) and thankfully we had a good journey, although we must have the only children in the world that don't sleep in the car.
By the time we left the Oma, 2 hours later they were overtired and therefore very irritable. We then drove to my father in law who has just opened a restuarant with Z's brother. I hadn't seen it yet as they were renovating when the girls were born so it was great to see it and the food there was fantastic. We spent the night in Z's childhood home which was a bit of a shock for him as with the restuarant, renovations and the fact Z's brother is moving back in, it was a mess. From what I can gather Z's mom was a fantastic housekeeper but she unfortunately died the year before we got married after a long illness and it is hard for Z to see what has happened to her beloved house in the meantime.
Idiots that we are, we forgot to pack the baby phone, which meant we had to keep running upstairs to check on the girls after we had put them down to sleep. Good for the figure but not so good for having a relaxing meal together. I was surprised though, the girls only woke once, after we finally got them to sleep (last weekend away they were taking it in turns to wake every hour, on the hour). This all bodes well for our holiday at the end of the month!!
Then this morning we had to take Enya for an EEG check which all went very well, although the neurologist did say she is delayed. According to her, at 5 and a half months, Enya should be making some attempt to crawl!?! or at least to propel herself on her tummy backwards. I was expecting that but at the same time it still is a bit hard to hear. Ciara did this for the first time last week but hasn't done it since.
Lots of appointments to get through this week still, hopefully they will all be at least as positive (more so would be preferred). Got to go Ciara is screaming her head off- she doesn't want to nap.
19 May 2008
15 May 2008
Go Enya
Unbelievable I know but true. Enya rolled over from her back to her tummy yesterday!! And I saw it!! I had laid her down in her sisters bed as I wanted to get Ciara up and as I watched she rolled onto her side and then on to her tummy. She did it properly too, with her legs flexed (Ciara still tries to do it over extension-she's my little banana baby;-)). I'll admit that Enya had an itsy bitsy bit of help as the blanket was a bit bunched up behind her so she rolled sort of downhill but still... MY PIXIE ROLLED (and she rolled before Ciara- that'll teach me to try and predict!!)
On the drinking front, it remains difficult but at least we got 500ml down her yesterday. I'm trying to be more relaxed about everything and giving her more rice cereal so she at least gets the 500ml of formula in her even if it isn't being drunk. I also have a bottle with fennel tea which I'll keep offering her when she's awake. Unfortunately both girls have been loathe to accept anything except milk, and Enya not even milk always.
Jana (a very good friend) came over to watch them after their dinner last night so Z and I could go out together for the first time in months. This was all very spur of the moment as Jana didn't want to babysit until the monitor was gone but since Tuesday we aren't using the monitor anymore. No more torture machine, GO ENYA!!
We went to the movies and saw a german film called Keinohrhase (no ear rabbit) it was hysterical and best of all featured my favourite german actor Til Schweiger. There are quite a few really good german movies around but they never dub them into english- I don't understand this!
Anyway time to go and terrorise my daughters with another bout of Vojta
On the drinking front, it remains difficult but at least we got 500ml down her yesterday. I'm trying to be more relaxed about everything and giving her more rice cereal so she at least gets the 500ml of formula in her even if it isn't being drunk. I also have a bottle with fennel tea which I'll keep offering her when she's awake. Unfortunately both girls have been loathe to accept anything except milk, and Enya not even milk always.
Jana (a very good friend) came over to watch them after their dinner last night so Z and I could go out together for the first time in months. This was all very spur of the moment as Jana didn't want to babysit until the monitor was gone but since Tuesday we aren't using the monitor anymore. No more torture machine, GO ENYA!!
We went to the movies and saw a german film called Keinohrhase (no ear rabbit) it was hysterical and best of all featured my favourite german actor Til Schweiger. There are quite a few really good german movies around but they never dub them into english- I don't understand this!
Anyway time to go and terrorise my daughters with another bout of Vojta
14 May 2008
from bad to worse
Well the day continued to get even worse with Enya only drinking 35ml at the next meal too. I honestly don't know what to do with her. The micropreemie support group that I belong to are always warning that force feeding is a good way to set up oral aversions, but at the same time we have summer temperatures here (finally!!) and Enya needs to be taking in more than 300ml of liquids on a warm day. I am already trying to get extra fluid in by making her solids more runny but when it's too runny then it gets very difficult to give on a spoon.
The first feed today has gone well, but it is usually the next 2 feeds that are difficult so we will see.
The first feed today has gone well, but it is usually the next 2 feeds that are difficult so we will see.
13 May 2008
bad day
After a fantastic long weekend (aren't we spoilt in Germany and we get another one next week!) today has been hellish.
I've put Enya to bed after she drank only 30ml and ate 2 spoons of food- she just kept refusing anymore! Normally we aim for 130ml of formula and at least 50g of food. This refusing is sadly getting more and more common and I'm at my wits end about what I can do. Z keeps telling me not to flip out but he's not home dealing with this all day. I worry that if I force the issue I'm just going to make everything even worse but if I don't try and get her to drink/eat more she will fall even futher behind her sister than she already has. As it is she is only putting between 50 and 100g a week on (100g is a very good week!!)
I'm just so sick and tired of always worrying!!
I've put Enya to bed after she drank only 30ml and ate 2 spoons of food- she just kept refusing anymore! Normally we aim for 130ml of formula and at least 50g of food. This refusing is sadly getting more and more common and I'm at my wits end about what I can do. Z keeps telling me not to flip out but he's not home dealing with this all day. I worry that if I force the issue I'm just going to make everything even worse but if I don't try and get her to drink/eat more she will fall even futher behind her sister than she already has. As it is she is only putting between 50 and 100g a week on (100g is a very good week!!)
I'm just so sick and tired of always worrying!!
8 May 2008
Excuses and general update
Really battling right now to find time to post. The girls are coming out of their sleeping phase but we haven't gone in to an eating phase yet unfortunately. This means although we're still fighting to get 500ml of formula/day down, we have time for play now.
Ciara is rolling onto her side from her back, so hopefully she will be rolling onto her tummy sometime in the next few weeks. Enya has also rolled onto her side a few times but as is often the case she is a couple of weeks behind Ciara. We don't begrudge her this, we are just so happy with how well she is doing- after a grade 3 intraventricular bleed with bleeding into the brain tissue it could have been a whole different story. I can't describe how proud I am of my little pixie. She is such a happy little baby, they both are really.
We had another doctors appointment yesterday, this time with our paediatrician. He is very pleased with Ciara and Enya's development saying that they will probably be a little delayed but that they should walk (!?!). He wants to keep following them up every 2 months so we can stop the Vojta therapy when it is no longer neccessary. I again stressed to him how much we all dislike Vojta, unfortunately he does not believe Bobath therapy can offer them much at this stage, so we have about another 4-5 months of Vojta ahead of us!
Other than that the sun has been shining for the last few days so we have been out enjoying the early summer weather. I'm trying to get a little fitter before we go on holiday at the end of the month as I know Z will drag me out for lots of walks- I'm really looking forward to this! We are also looking for a lightweight twin stroller as our present pram takes up the whole boot and is therefore not practical for our holiday (we're driving to the dutch north coast-about 5 hours drive away). Any recommendations for strollers are welcome! It must be lightweight, fold up small, be able to recline the backrests and comfortable (and avaliable in Germany). Please help!!
Ciara is rolling onto her side from her back, so hopefully she will be rolling onto her tummy sometime in the next few weeks. Enya has also rolled onto her side a few times but as is often the case she is a couple of weeks behind Ciara. We don't begrudge her this, we are just so happy with how well she is doing- after a grade 3 intraventricular bleed with bleeding into the brain tissue it could have been a whole different story. I can't describe how proud I am of my little pixie. She is such a happy little baby, they both are really.
We had another doctors appointment yesterday, this time with our paediatrician. He is very pleased with Ciara and Enya's development saying that they will probably be a little delayed but that they should walk (!?!). He wants to keep following them up every 2 months so we can stop the Vojta therapy when it is no longer neccessary. I again stressed to him how much we all dislike Vojta, unfortunately he does not believe Bobath therapy can offer them much at this stage, so we have about another 4-5 months of Vojta ahead of us!
Other than that the sun has been shining for the last few days so we have been out enjoying the early summer weather. I'm trying to get a little fitter before we go on holiday at the end of the month as I know Z will drag me out for lots of walks- I'm really looking forward to this! We are also looking for a lightweight twin stroller as our present pram takes up the whole boot and is therefore not practical for our holiday (we're driving to the dutch north coast-about 5 hours drive away). Any recommendations for strollers are welcome! It must be lightweight, fold up small, be able to recline the backrests and comfortable (and avaliable in Germany). Please help!!
5 May 2008
Long weekend over
I love May as we usually get at least 2-3 public holidays. 1st of May is a public holiday here, which for some reason is associated with vandalism and riots. We however had a wonderful long weekend, even if poor Z had to go to work on Friday.
I took a complete break from physio for 4 days and only restarted today. I think both the girls and I needed the break as when we restarted this morning there wasn't a lot of screaming from anyone.
I also got a sweet film of them this morning chatting and laughing at each other- this is the first time they have really interacted with each other where no one else has been encouraging them. I will try post it later, when I work out how to do it. W
We also had a fantastic weekend away in Muenster visiting friends. They also have 2 young children so the set up was very baby friendly, they even had a cot we could use (not much space in the boot for luggage with our monster pram in there). On Sunday we spent the day in the zoo which was interesting but also very wearing as the girls were too curious about their surroundings to sleep and by the end of the visit were very crotchety. Like I said interesting experiment but not one that will be repeated in the near future!
Today we had our postponed SLT session, for once Enya didn't behave herself, so the SLT finally got to see what a "real" feed is like. Funny, this time we get to go back in 2 weeks. I think he finally believes me that Enya has a problem with drinking. He also recommended that we go for a feeding assessment by the behavioral team (no idea what their official job title is in English as I only know the acronym, ESKB, in German), so we get to add another appointment to our calender this month. We also got to try out a small beaker for those days when she flat out refuses the bottle. He got her to drink about 5mls from the beaker, but when I tried she kept bringing her hands up to help and getting too much at once, so it all dribbled out. I think this is a case of practice makes perfect, at least she is getting a head start on drinking from a cup!
I took a complete break from physio for 4 days and only restarted today. I think both the girls and I needed the break as when we restarted this morning there wasn't a lot of screaming from anyone.
I also got a sweet film of them this morning chatting and laughing at each other- this is the first time they have really interacted with each other where no one else has been encouraging them. I will try post it later, when I work out how to do it. W
We also had a fantastic weekend away in Muenster visiting friends. They also have 2 young children so the set up was very baby friendly, they even had a cot we could use (not much space in the boot for luggage with our monster pram in there). On Sunday we spent the day in the zoo which was interesting but also very wearing as the girls were too curious about their surroundings to sleep and by the end of the visit were very crotchety. Like I said interesting experiment but not one that will be repeated in the near future!
Today we had our postponed SLT session, for once Enya didn't behave herself, so the SLT finally got to see what a "real" feed is like. Funny, this time we get to go back in 2 weeks. I think he finally believes me that Enya has a problem with drinking. He also recommended that we go for a feeding assessment by the behavioral team (no idea what their official job title is in English as I only know the acronym, ESKB, in German), so we get to add another appointment to our calender this month. We also got to try out a small beaker for those days when she flat out refuses the bottle. He got her to drink about 5mls from the beaker, but when I tried she kept bringing her hands up to help and getting too much at once, so it all dribbled out. I think this is a case of practice makes perfect, at least she is getting a head start on drinking from a cup!
2 May 2008
coffee free
I haven't written about this up to now because we've been doing this off our own bat, but for the last month or so we've been gradually reducing Enya's caffeine. Only by 1mg per week but it has been a steady decrease without any sats swinging. She gto her last dose of 1mg yesterday morning and we are now hoping that we will remain coffee free!!
The best part of this is we told the Prof we will be keeping the monitor for another 2 weeks and if she remains as steady as she has been up to now (sats average overnight of 98-99%) we will stop using it, and he agreed!!
Now on to something completely unrelated, yesterday was a public holiday here in Germany and we had a group of friends over for the first time since the girls were born. It is traditional here to go for a walk on May Day with the whole family and friends, usually dragging a little wagon filled with beer and with a small tree covered in ribbons. As we live in easy reach of forest (who doesn't in this neck of Germany!) they all met here before we set off on our walk, with 10 adults and 7 kids it was hard keeping everyone together but it was glorious weather and fun was had by old and young alike. After the walk we stopped briefly in the local park before all coming back to our house to grill (our 2nd BBQ of the season). I have never met a nation so fond of BBQs as the Germans!! I will post photos as soon as I get around to it.
The girls were completely overwhelmed/overexcited with so many people here and so got completely out of their schedule, which resulted in the first 3am feed in 2 weeks :-( . Although on the plus side it means for the first time in ages we got more than 600ml into them in a day ;-).
We are away this weekend-off to Munster to visit friends as a trial run for our holiday at the end of this month. We want to see how the girls cope with new beds, new sights and sounds and how we manage (what we can't live one week without)out of our home. Wish us luck as it's a 2 hour drive to Munster!!
The best part of this is we told the Prof we will be keeping the monitor for another 2 weeks and if she remains as steady as she has been up to now (sats average overnight of 98-99%) we will stop using it, and he agreed!!
Now on to something completely unrelated, yesterday was a public holiday here in Germany and we had a group of friends over for the first time since the girls were born. It is traditional here to go for a walk on May Day with the whole family and friends, usually dragging a little wagon filled with beer and with a small tree covered in ribbons. As we live in easy reach of forest (who doesn't in this neck of Germany!) they all met here before we set off on our walk, with 10 adults and 7 kids it was hard keeping everyone together but it was glorious weather and fun was had by old and young alike. After the walk we stopped briefly in the local park before all coming back to our house to grill (our 2nd BBQ of the season). I have never met a nation so fond of BBQs as the Germans!! I will post photos as soon as I get around to it.
The girls were completely overwhelmed/overexcited with so many people here and so got completely out of their schedule, which resulted in the first 3am feed in 2 weeks :-( . Although on the plus side it means for the first time in ages we got more than 600ml into them in a day ;-).
We are away this weekend-off to Munster to visit friends as a trial run for our holiday at the end of this month. We want to see how the girls cope with new beds, new sights and sounds and how we manage (what we can't live one week without)out of our home. Wish us luck as it's a 2 hour drive to Munster!!
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