30 May 2008
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!
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.
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!!
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.
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.
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.
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