31 Jul 2008

Pudgy legs

I was looking at Enya this morning and noticed that she too finally has pudgy baby thighs. Don't get me wrong, she is small and her waist is tiny (hopefully in 40 years I can still write that ;-)) she still fits into size 3 nappies with the tabs almost end on end, but she no longer has chicken legs. There is finally a bit of fat and more importantly muscle on her legs.

The darling girls allowed us to sleep in until after 7 this morning, I got a fright when I woke of my own accord and saw how late it was. We are no longer being wakened at 3am but they usually wake around 6:30am. Unfortunately Z had to go to work so we couldn't lie in and enjoy the late start.

Z is finding it really hard after his leave to only see the girls for 45 mins in the morning and then again for an hour in the evening. We get them out of bed just before 7 in the mornings feed them and then they go down immediately after for their morning nap as they are still very tired (latest 8 am). They wake anywhere from 9:30-10 and play until just after 11am when I feed them again and then back to bed for another 1-2 hour nap. They get another bottle at around 3ish in the afternoon followed sometimes by another nap although this one is usually just 1/2-1 hour long. Z comes home around 5:30-6pm to play a bit with the girls and then at the latest 6pm we start with the evening meal with the aim to get them into bed by 6:30-7pm. Any later and they are impossible to feed and settle as they are just too tired. Ciara has been known to fall asleep while being fed, she had to be woken up for every mouthful, she was too cute (we couldn't just leave her as she would have woken up at 3am starving-voice of experience speaking here).

This is the schedule that works for them and I know on the days where we deviate from it due to appointments how cranky they get, so obviously they need this much sleep, it just makes me sad for Z as he doesn't get a lot of time with them. It makes me wonder how moms who have to work manage. This is not a critisism of working mothers, I know we are fortunate that I can stay home with the girls this long, but it must really be hard to miss out on so much of your child's childhood!

30 Jul 2008

Rocking babies

I now have 2 babies that are up on their hands and knees and rocking wildly. Enya started yesterday afternoon and now there is no stopping her. She only holds the position for a couple of seconds but is so proud of herself. Needless to say every time she does it I'm cheering like a mad woman. Ciara manged to lift her hand while on her hands and knees for the first time yesterday, up till now every time she's lifted her hand she has slid down onto her tummy from her knees. Ciara also sat onto her bottom from her hands and knees yesterday- she was still weight bearing through her hands but she got her leg out the way to sit on her behind ;-). PROGRESS!!

I honestly can't wait for them to be crawling as they are now too heavy to carry together and the one left behind always throws a wobbly. Please remind me of this post when I start whinging about them being too mobile!!!

PS a nice positive post for my 100th don't you think *lol*

29 Jul 2008

Thank you Z

As previously mentioned we've been having a bit of a heat wave here, summer has finally arrived! Z had a week and a half leave (when I wasn't doing so well) and used some of his holiday to erect a sun sail over our terrace so the girls could enjoy the "fresh" air. I think he did a sterling job, so thank you Z!!

We've been out on the terrace most days and have even been enjoying paddling in the (tiny) baby pool.

Don't mind the grey skys we're finally having a summer thunderstorm this afternoon to cool things down.

We went to the paediatrician again about Enya not drinking, we had a couple of days last week where she only drank 100mls. His advice is as long as she is still putting on weight and not dehydrated to stop worrying. He gave me samples of a few other milk powders to try but as they are not thickened Enya won't drink them so we remain in a holding pattern. We've gone back to our AR thickened formula and are once again pressing on the teat. My aim is now to get her drinking out a cup as quickly as possible and do away with the bloody bottle before her bottle phobia gets any worse.

27 Jul 2008

Now for something completely different

The internet preemie support group I'm a member of were discussing hand disinfectant for use at home (post discharge) and it made me realise yet again how different the advice as well as treatments are in US as compared to what we've experienced.

I've often read that in the US the parents are involved in the care of their babies from early on, I think we were allowed to change our first nappy when Ciara was about 5 weeks old, we had to wait another couple of weeks before we were let loose on Enya. We however were encouraged to start kangerooing within a week of birth (with Ciara after 3 days:-)) where in the US they seem to start much later (were our girls particularly stable for preemies? I don't think so as JT, the 23 weeker, also started kangerooing at about a week old). I do know a lot of micropreemies make it home before their due date in the States where here in Germany that is the rare exception.

When we were discharged from hospital no mention was made of the fact we should limit our exposure to people during the RSV season (our discharge was slap bang in the middle of the season which ran from November to March). Maybe they thought we were sensible enough to realise that for ourselves but anyhow it was never mentioned. The other preemie blogs from the US that I read on the other hand write that they were specifically instructed to limit their contacts and avoid crowded places during the first 2 RSV winter seasons. Some are even advised not to place their children in creches for the first couple of years.

We were also discouraged from going along the route of hand disinfection once we were out of the hospital and away from the hospital bugs.The explaination we were given is that our daughters needed to be exposed to normal household germs to start building up their immune system. For this reason also during our hospital stay we used to wear our street clothes in the ICU even when we were holding the girls (except when we kangerooed obviously which is done bare skin to bare skin). The photos I see on the US blogs however show most parents wearing clean gowns over their clothes and I have already mentioned the discussion on what was the best hand disinfectant for home use on the preemie support group.

I wish I knew why there is such a large difference in the advice and treatment. Are the US parents more able than we in Europe that they can start assisting in the care earlier? I can't believe the US has more germs than Europe or that our doctors here are giving us foolhardy advice, given that we have not had any infections or real illnesses since being home. What do you think?

24 Jul 2008

Summer has returned

After freezing our a&*£s off for the last week summer has finally returned in full force, which means I can't make up my mind if my daughters' shiny red cheeks are due to the heat or could they finally, at the age of eleven months, possibly be getting their first teeth!!

We met up with our neighbour from the Kinderklinik today (we had planned to meet 2 weeks ago but it got cancelled as the baby P had a fever). This little P from the hospital weighs nearly as much as Ciara now and is at least as big, although corrected she is 2 months younger than my two! Isn't it fantastic how babies can grow (at least when they eat they can), last time we saw her she was still in preemie clothing and weighed 2 and a half kilos.

I sent Z in my stead to physio this week as I hit rock bottom, the result is that Ciara is no longer getting physio and will now just be monitored while Enya still continues with the full program.

Ciara is now rocking so wildly on her hands and knees that her knees slide forward but she hasn't figured out how to move her hands forward. She has also sat from her hands and knees down onto one hip a couple of times, but hasn't figured out how to sit up properly yet. Enya is now trying to get onto her hands and knees but battles to keep her knees together. She does however watch her sister and then tries to imitate what Ciara is doing. They are taking more and more notice of each other and what is really cute is Ciara sometimes seems to be trying to comfort Enya when Enya starts to cry- probably just coincidence but cute nonetheless.

22 Jul 2008

Not doing well

Me this time, not the girls. We're coming up for the anniversary of when I was admitted to hospital and with one thing and another I'm not coping very well. Thankfully Z has this week off.

Enya has lost weight this week but when she only drinks one bottle the entire day what can you expect. She is still eating her solids at least, even if that is not as much as usual.

18 Jul 2008

Neurodevelopmental update

Yesterday was the 3rd preemie developmental follow up. We got to see B, who is a friend of ours as well as a neonatologist. She hadn't seen the girls since February and was very pleased at how they've grown and developed.

As expected she was especially pleased with Ciara's progress, as you may remember in February they were talking about Ciara having signs associated with brain damage (high tone in her legs, hands always being clenched etc.). B said that we should continue physio with Ciara until she is crawling, but also said she believes it's only a matter of weeks (please please please!!). Enya will need physio longer, but I think if I only need to treat one child it will take some of the stress out of my day, even though the physio wants us to go back to 4 sessions a day with Enya!

On the eating/drinking front B told me off for getting too fixated on numbers, as long as Enya is not dehydrated and continuing to grow albeit on her own curve, all was well (even if she is only drinking 250ml of formula a day). So I'm not to put any stress on myself and let Enya rediscover the joy of drinking! Now I've heard it from everyone and so I'll try (again) to relax about her milk consumption. On that note I must add Enya is continuing to drink her bottles without any assistance from us, she's even sucking occasionally!

Our friends from the UK arrive tomorrow morning so please excuse me not updating or commenting on your blogs for a few days.

16 Jul 2008

Drinking diary

Just as well I didn't get too excited yesterday as today has been the pits! Yesterday I'd planned to feed Enya her 3rd bottle with a spoon by mixing a bit of Brei (porridge) in. I thought though, before doing that, offer her the unthickened formula with her normal thickened milk teat and what did she do? She finished the bottle without any help at all (I'd only made 70ml but it was still without a fight and she sucked it down all by herself!!). Fluke, I thought, but did the same again for the evening bottle and again she finished the bottle, only this time it was her normal 130ml.*


Until this morning! First bottle she drank 40ml and then ate the rest as Brei which shows that her reason for refusing is not that she is full. Next meal 80ml but required a lot of encouragement and took about 30 min just with the bottle. This afternoon she drank another 80ml again only with a bit (OK a lot) of encouragement. I have however refused to press on the teat which means she is completely in control of how much milk comes out. Of course the hole in the teat is so large that it flows out without her having to suck. So here we are, one more meal to go today and she has drunk a grand total of 200ml. She's had about another 130ml in Brei form but this means she also hasn't had any space left for the solids she normally would eat. She has already lost 70g in the last few days.

I'm not sure how much more of this I can take!

*PS we had tried this before with unthickened milk and large holed teat and at that time she couldn't cope with the milk flow.

15 Jul 2008

Happy 11 month birthday

In one month my little babies are going to be ONE YEAR olds!!! It's amazing how time flys, isn't it.

I'm happy to report the house is now clean and safe for visitors to enter. Since the girls were born housekeeping has not been my priority, but when guests come, I'm too embarrassed to let them see the normal state of the house. It drives poor Z mad, he's a typical german and likes things "orderly" ;-). Poor guy he definitely didn't marry a german hausfrau!

On the eating front with Enya we have made a small step forward but I've been burnt too often to get excited yet. I'll write more when I believe it!

14 Jul 2008

looking forward to a new week

Another busy week this week, but for once due to normal everyday appointments NOT medical ones!! On Wedensday I'm having a couple of friends over for breakfast with their daughters (yes we all had girls!). A playgroup for babies if you will ;-). Of course this means I have to do a major clean tomorrow but it's going to be worth it for some adult company during the day. On Friday I'm meeting a fellow preemie mom from the Kinderklinik. We haven't seen each others girls (yup another girl) since last year so it should be interesting. She was saying her daughter weighs as much as Ciara even though she is about 2 months younger (corrected), GULP!

We do have one medical appointment on Thursday, our next neurodevelopmental assessment. I'm going to be interested to see what they say this time round, up to now they have always made out that Ciara is the "Sorgekind", where we've been saying she's fine!

Then on the weekend our next load of visitors arrive for a long weekend. They are all going to be bunking down in our lounge which is right next to the nursery and unfortunately C&E are still doing the 3am thing!! We have offered to put up tents in the garden if they can't cope :-) they're friends from the mountaineering club where Z and I met so they are used to tents.

Now we just have to hope the weather improves so we can do something on the weekend!

11 Jul 2008

I can't help myself

I love these photos that my mom sent me from when she was here last month, so I have to share them.
I'm not responsible for the bows, they were a gift from Z. You have to see the outfits they belong to though!! I'll post that photo when I've downloaded it!

By coincidence Enya is always on the left, the last shot is also Enya!

new low

Do you remember me writing I wouldn't panic? Well last night I couldn't help myself.

Enya hit a new low: she drank only 280ml of formula the whole day yesterday! Eating wise she was not any better. For the past few weeks she hasn't really wanted to drink, she is biting down on the teat so nothing can come out and then pushing the teat out her mouth with her tongue. You got to give her marks for ingenuity. But yesterday was the pits!! It was only thanks to the last feed last night that we even got in to the 200's!

Repeat after me : I will not panic, I will not panic, I will not panic.....

We have swopped back to our old formula in the hopes that she will drink that at least, but bang go any hopes of increasing her calorie intake.

On the positive side Ciara is now holding her own bottle when we give it to her although I still cuddle her while she's drinking. They don't get cuddled as much as a singleton would so I don't want to lose these four definite cuddle times per child per day if possible.

7 Jul 2008

how far we've come

OK, enough already with the self pity! I'm lucky I've still got both my daughters and we've come a long way since August last year. I can't believe in little over one month we will be celebrating their FIRST birthday. And this year we will be celebrating! Last year for obvious reasons we didn't celebrate their birth so we will be making up for it this year!

first nappy size

as a comparison: on the left is Ciara's nappy size now, on the right is the nappy size they wore when they were born.

I have photos from shortly after their birth where the nappy is wrapped almost twice around Enya's waist (she lost over 100g in the first week of life-the lowest weight I heard was 520g) and covers her almost to her armpits. Like I said we've come a long way since then.

Now if Enya would just quit going on feeding strikes, we might get her to grow even bigger ;-). We've had another week where she has put on a grand total of 30g!

6 Jul 2008


I know intellectually that it is expected for such premature babies as ours to be developmentally delayed but it was really underlined this weekend.

We had the summer family day with Z's volleyball friends yesterday, one of the ladies had her daughter, lets call her M, 6 weeks after our girls due date (her daughter was also a couple of weeks early). M is sitting by herself, crawling and even attempting to stand. Ciara and Enya are rolling all over and Ciara is going onto her hands and knees but no sign of sitting or forward movement.

I know they will do it in their own time and M is doing this all very early but it just brought it home once again that the effects of their premature birth will accompany them long term.

I'm also fed up with Vojta therapy, more and more I have the feeling that it is pointless torture, that I'm not doing it properly and I'm sick and tired of always being the one that has to do it (Z refuses to do it at all anymore). I want to drop it but our paediatrician has already said if we stop Vojta, we will not get another form of physio prescribed! I would prefer to do Bobath therapy which is a gentler technique. As much as I hate Vojta, I know the girls need some form of physio therefore I have no choice but to continue.

Sorry just feeling a bit down today!

3 Jul 2008

next discharge

No unfortunately not from physio, but from the behavioural team for Enya's eating. They said they have helped us as much as they can (by telling us to keep the mealtimes down to 15 minutes!?!) and not to panic when she doesn't eat! I'm not sure how I'm supposed to do that but I will try. On the plus side she has put on about 400g in the past 2 weeks which is fantastic but at least in part due to the fact we are now giving her higher calorie formula.

Ciara and Enya are also now confirmed tummy sleepers and are rolling all over their cots. I never know where to look when I come in in the middle of the night to put their dummies back in (we don't have a night light on so it is all done by feel;-)). Yes, that game is still continuing, I'm now waking at 3am even if they aren't crying as it is such a habit for them. I'm seriously debating taking their dummies away!

Ciara is pushing up onto her hands and knees and rocking so it looks like crawling is in our near future, but then she made us wait for over month between rolling on to her side until she rolled all the way on to her tummy so Enya may pip her at the post again. Note to self: finish childproofing the flat!