30 Apr 2008
The appoinment was at 11:30am but Z didn't get home until nearly 14:00 after the appointment, as always appointments were running late.... and the results from the feedback were.... NONE. The prof hadn't had a chance yet to look at the results! Z has taken half a day off work for nothing. Why they couldn't phone us to delay the appointment I don't know, but this is the last straw. Any future appointments that require hospital appointments will be done at another hospital, even if I have to drive to Cologne (an hour away). The worst thing about it is, this Prof is head of the entire hospital not just the NICU and neonatology.
Enough said, rant over, time for physio
27 Apr 2008
It all started when the girls came home on an iron supplement that we needed to give them twice a day, normally babies lay down an iron reserve in the last month in utero that sees them through until they start solids, ours didn't get the chance. The iron supplement sounds innocuous, but it causes ugly orange splodges that don't wash out of clothes (as well as constipation), and babies being babies, it does quite often get spilled onto the clothing. Again it wouldn't be too bad except that a lot of our clothing has been loaned to us by friends who would like it back for their next child. The only thing we have found that works is Flecken Teufel (Stain devil) for rust removal. It which works like a dream, even on the iron stains that have been through the wash maschine more than once.
But now fast forward 4 months and starting solids. After rice what do most people give to start....carrots and what do carrots cause....you got it, orange splodges, almost identical in colour to iron! Now we are 6-7 weeks into solids so our range of foods has expanded to include amongst others: sweet potato (orange splodge), butternut squash (orange splodge) and blueberries (purple splodge).
Needless to say that I'm running out of splodge free clothes and am at my wits end what I can try next to get carrot stains out of the clothes we've borrowed. I try wash them as soon as I see it but it's not always feasible. Any tips appreciated!!!
And the iron supplementing continues, in the Uniklinik Essen when we were there in December for Enya's eye op, they would only give the iron down the nasogastric tube saying it tasted disgusting and the babies won't take it from the spoon....I beg to differ, the photos are Ciara and Enya sucking on their "iron" spoons to get the last traces off.
25 Apr 2008
Cue 8am ringing the doctors, to be told I don't need to bring her in, they'll prescribe some antibiotic eyedrops as she has conjunctivitis. The fun part of this is, conjunctivitis is very contagious so I have to keep rinsing the pus/slime from her eye and try not let her get it on anything else (read Ciara).
So after rushing to the doctors to pick up the prescription and collect the eyedrops it was back home to get the girls in bed so they got at least a bit of a morning nap, but they weren't having any of it. Meltdown times 2 as they wanted to have an early lunch, and then Enya continued to meltdown instead of taking her bottle. Eventually soothed her down such that we had a dream feed (haven't had that since the 2am feeds stopped) and now all is quiet in the house of Z.
24 Apr 2008
In general she was satisfied with what she saw but we definitely need to keep up with the physio. Ciara is very irritable i.e.she does not handle new situations well but she could see at home Ciara does more than she demonstrated in the assessment (a few times Ciara relaxed and her true level of ability shone through). Enya has her first cold but this didn't affect her showing. With Enya the doctor remarked how difficult it is for her lying on her tummy.
The end result is we need to keep going with physio at least until the girls are both crawling. She also has put our names down for a "Heilpadegogin" which falls under the broad auspices of OT but also looking at speech and social interactions. That will probably only start when the girls start walking though. The doc also offered me the chance to get my feeding technique critiqued to check that I'm not the reason that Enya sometimes still refuses to drink (no she didn't put it quite like that but in essence that was what was meant!!).
On the plus side she believes that there were no signs that the girls are stuck in any patterns of movement (that might suggest CP) and saw no reason to think that they won't eventually walk although they are a bit delayed (still have some primitive reflexes that they should have outgrown by now).
So as I said nothing unexpected came out today, but I'll be interested to get a copy of the report nonetheless.
22 Apr 2008
On that note we haven't been outside much with the pram as the girls are on a tight schedule:
7am Wake up
7:15am bottle and breakfast
8:30am morning nap
10am wake up, physio
11am bottle and lunch
12:30pm midday nap
2pm wake up, physio
3pm bottle and play
4:30pm afternoon nap
6pm wake up, physio
7pm bottle and dinner
Does anyone else think these poor kids do nothing but eat, sleep and physio? I can't cut the naps as they really need them. Enya fell asleep over lunch again today- you know it's bad when you have to wake her up for every spoonful! Physio is only getting done 3 times a day (supposed to be 4 times a day) and takes about 20mins per child, and feeding....well they need to eat, don't they.
I worry that they are not getting anytime to play and be babies. Their awake time is filled with physio which is very regimented and they don't get a lot of time to play/practice moving their bodies and gain new skills (eg like rolling- nowhere near happening!!).
21 Apr 2008
20 Apr 2008
For the last week they have been sleeping fantastically, I haven't written about this up till now as I didn't want to tempt fate too much, but they are going down at 8pm and waking at 7am. Ciara may wake a couple of times around 5-6am but goes back to sleep as soon as her dummy is replaced in her mouth. This sounds marvellous but the down side is we are battling to get 500ml of milk into them. Even Ciara has had a couple days where she hasn't managed 400ml. What makes it even worse worse is that they refuse to even try any other drink.
However on the plus side the solids continue apace. We have also added fish to the menu plan, thank goodness they seem to take after their father and really enjoy fish (so far cod and salmon have been gobbled up) as I HATE fish!!
18 Apr 2008
Well a couple of weeks ago they asked if I would mind them using the girls as guinea pigs for one of their courses, of course very closely supervised by their lecturer who is also our new physio (lets call her Frau W), and I said yes immediately (bloody urge to always help) however I later regretted the quick nod. After a bit of dithering and after chatting a couple of times to Frau W, however I let the decision stand.
Today was the big day. The session started with Ciara being assessed and as usual she let her displeasure be known. She screamed herself purple, only pausing when I was physically holding her. Despite this, they managed to see most of what they wanted to see, they only didn't try getting her to roll. The assessment took most of the time with only a short treatment period right at the end, but it was worthwhile as Frau W explained more than she normally does to me, so I've picked up a few tips for the home sessions. Enya came second and charmed them all with her smile and babbling. She cooperated with them and only cried once. She also came very close to rolling onto her left side so we will have to practice that at home.
They had to try estimate how old the girls were from the patterns of movements and skills that were demonstrated and their final estimate was that Ciara was behaving like a 5-6 month old and Enya a 6-7 month old!! What I found most comforting was that Frau W said that they appear bright and interested in their surroundings and although both still have deficits there are no consistent red flags to raise the suspicion of Cerebral Palsy!! Please let us have got away without that!!
I'm now very interested to see what comes out of the neurodevelopmental assessment next week. We got a copy of the conclusions from the last assessment in which problems were stated that we had not even heard mentioned before (eg Enya has low truncal tone), so this time I'm going to ask that they tell us exactly what issues they find.
17 Apr 2008
So after the mid morning milk feed we packed the car and were off. First stop the baby shop to buy attachments for their high chairs so that the girls can start using them. Then on to the city mall so Z could order new glasses. We had visitors with small children on the weekend and one of the toddlers found Z's glasses and some how managed to bend them almost into a knot. The best part was we had to feed the girls while we were out and it all worked like clockwork. Until today I've been to terrified to be out for a feed as it can get very loud especially when one has to wait her turn. Today however we did follow on feeds (Z was still getting measured for his glasses so I had to start alone) and despite this the girls were as good as gold.
The best part of it all was that Ciara and Enya were both very interested in everything going on around them and were not at all intimidated by the noise, new surroundings or crowds.
All in all a successful day.
16 Apr 2008
Ciara now weighs nearly ten times as much as her birth weight and Enya ten times as much as her lowest weight (520g about a week after she was born). Enya still fits into size 0-3 months but Ciara has already moved up a size and will soon be fitting into size 6-9 months! She started life on the 10 percentile line for weight and height but is now at the 50 percentile line for both. She must take after her dad in that respect. Enya is a little pixie and takes after my side of the family (Z calls us the hobbits).
They are both "smiley" babies mostly and it's usually not difficult to get them to laugh. That being said we suspect that they are teething as they are both drooling a lot, chewing on everything, off their milk, and sometimes very whingy. I can however not feel any lumps along their gums so we will have to wait and see.
And last but not least, I wrote that Ciara was waking us up at 3am with her screeching, well she can't anymore, she has no voice left!! Over the weekend she was screeching at Z the whole time and now she is completely hoarse. It is so cute when she trys to squeal and this hoarse little croak comes out. She doesn't have any pain, that we can tell, and she hasn't stopped trying but we are no longer getting woken up by her.
Sweet dreams for all
14 Apr 2008
It maybe because we didn't get to bond immediately after they were born. I had a general anaesthetic for the CS as the spinal didn't work and only got to see them the next day. Even if I had been awake they had to really fight to save Enya so I wouldn't have seen her in the theatre, Ciara did cry when she was born but was also then intubated (and then extubated by that evening when Z went in to see the girls).
We were really lucky as by the 3rd day after the girls were born we were allowed to start kangaroo care with Ciara (Enya had an IVH and so we were only allowed to start kangarooing the week after with her). When I read other micropreemie blogs I realised we were very lucky in that our unit was very pro kangaroo care and we could almost always kangaroo. Even when they reintubated Enya and they had to bag her during the transfer to the parental body, they encouraged us to kangaroo with her. They said the benefits from the time spent on us far outweighed the stress of the transfer, as she was always more stable when we cuddled her.
However we were not involved in the actual care of the girls until they were nearly 2 months old. We missed their first baths, their first attempts at bottle feeding, we didn't get to put their first clothes on, we didn't get to hold them first, we didn't even get to accompany them for their first car journey, we even had to ask before we touched them. Although I spent most of the day in the hospital with them, the nurses spent more time with them and knew more about them than I did. When they finally were allowed into the warm beds I still had to ask before picking them up, changing their nappys or bathing/feeding them. I felt that they belonged to the nurses and I was just a very frequent visitor. This feeling was not helped by the saga with the breast milk (They made me feel my milk was poison for Ciara). I felt there was nothing I could offer the girls because anyone could cuddle/bath/feed them, the nurses could even do the feeding/bathing much better than I could.
Now even though Ciara has been home longer than she was in hospital (as of the weekend:-)), the feeling still persists that they are not all mine although it is subsiding veeerrry slowly. However I still don't have the classical mommy feeling and feel I should be asking permission before I change anything in their care. I guess it will take longer to make up the time we lost and to bond with them.
13 Apr 2008
The only reason I'm not flipping out right now is that she also ate 230g of solids! The problem with her not drinking is the ever present constipation. So today we will cut back a bit on solids and focus a bit more on drinking. I know I can plan all I want, she does what she wants, but I always feel better when I have a plan in place.
Gotta go, Enya wants her next bottle ;-)
11 Apr 2008
Today she drank 130mls WITHOUT any help (I only pressed the teat once, right at the end to get the last mouthful out) in 10 mins. She followed it up by eating her potato and courgettes (all 40g of it) in under 10 mins. In other words we got her whole meal down in less than 1/2 an hour!
My little pixie is a genius. Now if she would only sleep nights!!
10 Apr 2008
Sleep is still a very prized commodity in the Z household, with Enya now waking us all up because she is hungry. She is now drinking on average 50mls more a day than Ciara (WTF!!!). Hopefully we will see the results of this when we weigh them again on Monday. I have to really hold myself back from weighing her everyday now that we have a scale in the house, it's not even as though I'd be undressing her just to weigh her as we have to do the Vojta exercises in the buff (them not me!).
We have started on meat as well with the solids- they have had chicken twice. The first time they were not at all sure about it, but the second time I disguised it better with apricot and tomato and they loved it. Infact it was so good I'm adapting it for a grownup dinner tonight :-). I highly recommend the book: Annabel Karmel's New Complete Baby and Toddler Meal Planner- the recipes are easy and the meal plans are also a great help when you feel like you are just fumbling through the whole intro to solids scene. I've pretty much done everything by this book although I'm starting to branch out this week. We have introduced meat sooner than described in the book as we need to get Ciara off her supplemental iron before she explodes. Constipation reigns here!
8 Apr 2008
And in the red corner coming in at 6510g, Ciara. She put on....gulp... 400g in the last week. I promise she is not being overfed-a couple of days there Enya drank and ate more than she did. We have however been giving her milk sugar to get her more regular. I think we're going to have to find another solution for her constipation!!
At the start of April I had my 5th anniversary of when I moved to Germany. In some ways it's hard to believe I've been here this long. I've lived longer in Germany than in any other country other than South Africa (I've also lived in Australia and England).
When I arrived in Germany I didn't speak any german (I hated languages in school-always my worst marks) but I found there is nothing like living in a country to help learn a language. It helped that my boyfriend, now husband helped me by not laughing at my attempts to speak german and encouraged me as soon as possible to get a job where I was forced to speak/practice (highly recommend the "deep end" method of learning a language). I feel sorry for the first few patients I had as I really battled to communicate but after the first 3 weeks my german came on in leaps and bounds.
Now 5 years later I still don't like talking too much but don't (often) hesitate if I need to phone /speak to strangers. My german is by no means perfect (can one learn a second language as an adult so thoroughly, that one could be mistaken for a native speaker?) but I can usually can communicate my thoughts. Why then do some people not take the time to listen?
Case in point I needed to order new SaO2 sensors for Enya's monitor, the old ones only go to 3 kg and she weighs 5kg now (Yup we cracked 5kg on Monday ;-)). First phone call, they listened and sent a sensor that goes from 5kg, unfortunately it didn't have the correct connection to fit our monitor. Second phone call the guy wouldn't listen- I tried repeatedly to explain that we wanted sensors that fit a child who weighs over 5 kg but he kept interrupting and talking over me. I thought he had however understood as he did repeat back to me "for over 5kg" but when the sensors arrived they were the old type ie under 3kg. Now we can still use them, as they still read overnight when she is still, but really is it such an effort to listen to what was being said and not immediately jump to the conclusion you know what I wanted to say?
Okay whinge over.
6 Apr 2008
... not happening again. Ciara woke us up shrieking at 4am. Not shrieking due to being upset or hunger or pain. No, she was awake and wanted some company, so she screamed, laughed and shrieked (repeat this was not crying/upset she was just being loud) until we came to get her out of bed. This is the 2nd morning in a row. I hope this is not the new trick of the month!!
My grand plan is to introduce an extra milk feed midmorning and drop the milk part of the midday and evening meals, instead offering them water/baby tea. Got that? Sounds really complicated but hopefully will work. I can't believe that I'm voluntary introducing another meal-I was so glad when they dropped the 6th meal themselves;-).
* Cathy-we are using Nestagel (from Nestle) but I believe in the US they use Simply Thick as a thickener. I don't know how it will work out, will get back to you how good it is.
5 Apr 2008
4 Apr 2008
Enya's appointment with the SLT was a vast improvement on the last, due in no small part to the fact we could concentrate on her. I've got a couple new exercises to try with her and he has shown me a new technique to calm her down. My little pixie who always lay so still in her incubator is now continuosly kicking and trampling her legs, it's no wonder she can't put on weight! He also told me about another product I can use to thicken Enya's milk/drinks, so we can start trying to get her to drink something other than just milk after her solid meals (we will still be pushing for min 500ml formula a day). Our next appointment is in 4 weeks (hence the play date for Ciara).
I had my yoga night last night, as I've mentioned before Z has encouraged me to get out the house once a week to maintain my sanity. I found a local yoga group which does not concentrate too much on the philosophy behind the exercises, but more on the stretches, which suits me down to the ground. I was really sore from my run at the beginning of the week but after yoga I feel back to normal.
So enough blabbering I need to get started on my next major cook up- Debs has convinced me the sooner we get the girls onto meat the sooner we can get rid of the iron supplement and the recurring constipation (Jackie- I know TMI ;-))
2 Apr 2008
On another note Enya is beating Ciara on the eating and drinking front today for the first time ever. I'm wondering if they are teething, they both are very irritable, off their food (well not Enya today obviously), drooling a lot and have intermittent low grade temperatures. I can't feel anything along the gums but the Hebamme kept mentioning "Zaehne einschiessen" which translated means "teeth coming in". She said the teeth can be the source for problems even before they start coming through the gums. Oh JOY!
1 Apr 2008
Yesterday was so bad because they just would not stop crying. I've never had this before- Enya had a total meltdown before lunch, 45min solid screaming and wouldn't be soothed. Eventually I calmed her down by rocking her to sleep (to the soothing accompanying tones of Ciara's crying). Thank goodness for my rocking chair- it is also the favourite aid for getting Enya to drink ;-). I kind of wonder if it is the reaction to there only being one person at home during the day again. They are both very demanding and wanting my attention the whole time where previously they were content to wait their turn.
Funny they don't seem to appreciate it when I tell them I've only got one pair of arms.