29 May 2008

Quick update

The past few days have been hectic trying to get everything ready before we go on holiday tomorrow (in about 8 hours we're leaving- must go to bed after writing this post!).

We've had an appointment everyday this week including the dreaded eye appointment on Wedensday. I'm happy to report that the retinas are looking good with both girls (both had ROP, although Enya had to be lasered), they have no squints and they are focusing and tracking as befitting their actual age i.e. 9 months. The bad news is, poor little Enya can't catch a break, a few weeks ao I wrote that she had conjunctivitis, it turns out it isn't conjunctivitis but she has a tear duct that is still sealed. Tears accumulate above the blockage and keep getting infected. This is apparently common with preemies and often resolves within the first year, if it doesn't resolve by August the opthamologist will have to poke it open which would need to be done under general anaesthetic. I don't need to say we really hope this is not necessary.

on that note I'm off to bed and will only post again after out holiday, thatmeans next weekend. Hope you all have a fantastic week!

27 May 2008

film day

Enya and I had our moment in the spotlight today and I'm happy to report that she didn't behave herself.

During the first 3 appointments with the Speech Therapist (SLT) Enya drank wonderfully, it was only at the last 2 appointments where she showed her usual difficult behaviour. I'm sure initially the SLT thought I was exaggerating how bad it gets until he tried to feed her himself when she was being difficult. I was worried that Enya was going to be as good as gold this morning (showing me up so to say)but it was a feed straight from hell. I only managed to get 60mls of milk down her and then to round it off nicely she only ate 5 spoons of solids, whinging and protesting the whole time. This is after me saying she has no problem with solids at all. They (ESKB advisers) are now going to evaluate the tape and we then have a feedback session in 2 weeks time. I really hope they come up with some good tips as I feel the situation is deteriorating rapidly.

Ciara in the meantime is on the move, I can no longer leave her on the mat and know she'll be there when I get back. The only good thing is when she moves off the mat onto the tiles she usually starts screaming because it is too cold (my girls are like me and prefer things a bit warmer, be it food,weather or the tiles under them), thereby warning me she's on the move again.

Z has started packing for our holiday on Friday, needless to say I haven't even thought about what to pack for me and the girls. I think the first holiday with the babies is going to be a huge learning experience, I'm just grateful we've got a car with a big boot as I think we'll need it. We're even leaving the monster pram at home to save space, instead we're borrowing a single buggy and taking 2 slings for easy transporting.

26 May 2008

Happy 6 months adjusted Ciara and Enya

I can't believe that if they had been born full term they would now be 6 months old. I knew pretty much from the start of my 2nd trimester that we would not go full term but I had hoped for 34 weeks (my OB hoped for 32 weeks). In the end we didn't even get that but it was enough.

Ciara celebrated by waking up at 2am and refusing to go back to sleep, she was wide awake and wanted to be entertained. We tried giving her bottle but even after she drank her full, she refused to go back to sleep. Unfortunately Ciara and Enya share a room and she was so loud she was disturbing Enya's sleep. In desperation we eventually left her to sleep in the lounge and went back to bed ourselves. We could hear her happily playing by herself until we fell asleep, she must have fallen asleep herself, because the next we heard from her was at 6am when she woke us all up again.

Today, despite a mega physio session, she has not slept much so this doesn't give me a lot of hope for tonight.

Enya in the meantime celebrated by cracking the 6 kilo mark (by 10 grams, I'm glad I weighed her before she peed!) and by sitting for the first time. We had to put her in the postioin but she then held the position for about a minute. We have however been advised by our physio not to practice sitting- she should bring herself into the sitting position (after she starts crawling). Before this time she does not have the muscle strength in arms and back to hold this position safely. Has anyone else heard of this?

PS Ciara has almost cracked 7 and a half kilos!!

24 May 2008

Zoo times two

top: Z with Ciara
below: Enya

Thursday was a public holiday again in our neck of the woods (have I mentioned how much I love May in Germany, our 3rd long weekend this month!) so we went to the zoo with the girls and friends.

This time we went to Dortmund Zoo which was fantastic, if a little hard to find. Once you are in the zoo you spend most of the day walking amongst trees which makes it feel as if you are in the countryside. It's beautifully laid out with the enclosures interspersed with open areas. My only criticism would be some of the enclosures are a bit small, but they are planning new enclosures so hopefully that will change. The girls were really good again, although they only really slept when we had them in the sling. Note to self borrow another sling before we go on holiday next week! My favourite was the orangutaungs, the girls are however still too young to take any notice of the animals. This is not a bad thing as it means we get to do all the zoos again next year ;-)

Then yesterday we had the long dreaded ESKB appointment. The advisors come from the psychology branch and advise parents how to handle common behavioural problems (see I'm not alone!). After a nice chat with them I agreed to come in and let them film me feeding Enya to see what they can suggest to get her more interested in drinking her bottles. They said the goal is to not have a bottle feed longer than 15 min otherwise the babies get bored and lose all interest in drinking. Given the fact that Enya refuses to suck this should be interesting!

21 May 2008

The day after

I did not sleep at all well last night. I kept reliving the moment where I turned back to the changing mat and it was empty! Enya is back to her usual smiley self, even her lip isn't swollen anymore but it'll take me a while to get over the shock, horror and anger with myself.
Enough self flagellation (sp?), we got kicked out of speech therapy today. My friend that usually babysits Ciara while Enya has speech therapy had to work today so I took both girls to the appointment. He was running over a half an hour late which I didn't appreciate (you try sitting in a full waiting room with 2 hungry 9/6 month old babies and see if you enjoy it!) Not fun I promise you, especially when another child keeps trying to give them dirty toys to chew on.
Anyway to cut a long story short, when he eventually called us I handed him Enya to feed and got busy with Ciara, he had up till today never tried to feed Enya. He got a grand total of 40mls of formula in to Enya in 45 mins (we normally manage 130ml in 15 mins when we press on the teat) before he gave up and believe me she was hungry before he started. She did her usual refusing/fighting display after she got bored with this whole drinking lark (took 20 mins), so he finally got to see and experience the reason why we press on the teat.
At the end of the session he said she has the ability to suck, she is just lazy. We've spoilt her, you see! Hopefully the behavioural therapists (ESKB people) will be more help on Friday. In the meantime we have made the teat holes into slits so she gets more milk out when she sucks to encourage her, but hopefully not so much that she drowns.
I can't say I'm sorry to drop SLT as I don't think he was helping anyway, I'm beginning to wonder if anyone is going to be able to help us! Maybe I should just concentrate on getting her to drink from the sippy cup.

20 May 2008

a first I could do without

I really could have done without this: we had our first accident today. I was cleaning Enya's eye this afternoon (now turns out it's a blocked tear duct, not conjunctivitis) and she fell from the changing table onto the floor. Thankfully apart fom a cut lip she was not injured but it scared me half to death. I literally just turned away to wet the cloth and when I turned back she was lying on the floor screaming. She landed on her tummy thankfully, I had just tested her yesterday and she now has the protective extension of the arms (a reflex) when falling forwards which I think helped prevent more serious injuries. The worst thing about it is I'm usually so aware of the danger of falling and have been known to lecture Z for laying one of the girls on the changing mat and moving away, but I was the one responsible for this fall.
It is also ironic considering our conversation with the neurologist yesterday about Enya's lack of mobility (she hasn't made any attempt to roll since that first time in the cot)that she some how managed to propel herself off the changing table, as our paediatrician said: she just wanted to show us that she can move!
On a slightly more cheerful note, another first today was that Ciara pulled her first plug out a socket. I definitely need to start childproofing our flat, we never got round to it before the girls arrived. Ciara has propelled herself off the mat a couple of times and is constantly rolling onto her side and stretching out to reach things that nrmally would be out of reach, it won't be long before she'll be into everything.

19 May 2008

Busy busy

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.

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

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.

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!!

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!!

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!

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!!