Well there you have it. I'd so hoped that we had been doing well enough on the solids that Enya would crack the 5kg mark but she didn't she went from 4920g to... 4920g. You got it, in the last week she ahs not put on a single gram, for the first time since December.
In part I think it is due to the change over to solids- they are not as calorific as formula, but also due to the diarrhea caused by the corn oil we were giving as instructed by the doc (we had to stop concentrating the formula when we changed to the anti-reflux formula).
Where to now? I don't trust the advice given by my doctor.
31 Mar 2008
All alone
Well, except for the girls of course! My mom was here last week as Z had to go to Stockholm for a work presentation (poor baby, even there he didn't get much sleep as the hotel room was overheated and with underfloor heating he had no way to adjust the thermostat).
I'm incredibly lucky with my family, they've all been here at least twice since the girls were born, staying at least a week each time. When Z found out he had to go away my mom immediately said she would try come out or failing that one of my sisters would. How fantastic is that!! It makes life so much easier when I can just concentrate on one baby at a time and know the other is being taken care of too.
It was really great having her here but I think she thinks I'm becoming terribly "german". In this household we record everything the girls eat (yes I'm afraid we weigh the food bowls before and after) and drink, if they poo, what they weigh and their temperatures (at least we've stopped recording if they wee, no point the nappies were always wet;-) ) . We will not keep doing this forever, when we know that Enya is eating enough to grow consistently we will stop but in the meantime my mom thinks we're crazy!
Anyway Z is back and my mom is back in good old Blighty and life continues
PS. on the sleeping front NOT GOOD. The last 4 nights they've been waking at 2-3am again. I can't work out why as they are both drinking enough during the day and I try make the last bottles at night big ones. Today we start 3 meals a day so maybe with solids just before bed they'll sleep through. I'll keep you updated!!!
I'm incredibly lucky with my family, they've all been here at least twice since the girls were born, staying at least a week each time. When Z found out he had to go away my mom immediately said she would try come out or failing that one of my sisters would. How fantastic is that!! It makes life so much easier when I can just concentrate on one baby at a time and know the other is being taken care of too.
It was really great having her here but I think she thinks I'm becoming terribly "german". In this household we record everything the girls eat (yes I'm afraid we weigh the food bowls before and after) and drink, if they poo, what they weigh and their temperatures (at least we've stopped recording if they wee, no point the nappies were always wet;-) ) . We will not keep doing this forever, when we know that Enya is eating enough to grow consistently we will stop but in the meantime my mom thinks we're crazy!
Anyway Z is back and my mom is back in good old Blighty and life continues
PS. on the sleeping front NOT GOOD. The last 4 nights they've been waking at 2-3am again. I can't work out why as they are both drinking enough during the day and I try make the last bottles at night big ones. Today we start 3 meals a day so maybe with solids just before bed they'll sleep through. I'll keep you updated!!!
27 Mar 2008
Bad blogger/feeding update
I know I've been a very bad blogger but I've been having mini meltdowns due to Enya's eating issues which we may, I repeat MAY have resolved.
After fighting to get a minimum (450ml) in Enya over the last weekend I phoned the paediatrician on Tuesday, to be told that I should try give her an extra cereal meal at night (HUH!?!). When I suggested that she might be having reflux he said that I could try an anti reflux formula (I had already worked that out myself I just wanted their okay on the formula change).
The results are with a thicker formula and a larger teat (with a bigger hole) SHE HAS STARTED TO SUCK!! Not consistently and not frequently but this is still progress! She still occasionally puts up some resistance when I bring the teat to her mouth but it very quickly subsides. She has drunk 600ml of milk today (our goal is 500-600mls) as well as eaten over 100g of solids!
This evening after I thought Enya was finished with her bottle, she cried until I brought the bottle back to her mouth and then kept pulling my hand with the bottle to her mouth, sucking and then pushing it away from her mouth. She landed up drinking another 20mls this way. I'm debating whether I should be looking into a baby cup for her so she can control her intake (at least for water/juice after solids)-although she is very young to be starting this. I will have to run it by the SLT next week.
Cross fingers hold thumbs this continues!!
After fighting to get a minimum (450ml) in Enya over the last weekend I phoned the paediatrician on Tuesday, to be told that I should try give her an extra cereal meal at night (HUH!?!). When I suggested that she might be having reflux he said that I could try an anti reflux formula (I had already worked that out myself I just wanted their okay on the formula change).
The results are with a thicker formula and a larger teat (with a bigger hole) SHE HAS STARTED TO SUCK!! Not consistently and not frequently but this is still progress! She still occasionally puts up some resistance when I bring the teat to her mouth but it very quickly subsides. She has drunk 600ml of milk today (our goal is 500-600mls) as well as eaten over 100g of solids!
This evening after I thought Enya was finished with her bottle, she cried until I brought the bottle back to her mouth and then kept pulling my hand with the bottle to her mouth, sucking and then pushing it away from her mouth. She landed up drinking another 20mls this way. I'm debating whether I should be looking into a baby cup for her so she can control her intake (at least for water/juice after solids)-although she is very young to be starting this. I will have to run it by the SLT next week.
Cross fingers hold thumbs this continues!!
23 Mar 2008
Vojta
Cathy asked what we do for physiotherapy.
Where I live in Siegen, Vojta is the therapy of choice for babies and children with delayed development. It is a technique that was developed in Munich, Germany and the international headquarters are nowhere other than in our local Kinderklinik. Needless to say the doctors all swear by it and when we spoke to our paediatrician about changing to Bobath, he told us it was Vojta or nothing (In Germany therapy has to be prescribed by the doctors, therapists are not first line practitioners).
Vojta is a way of provoking reflexes that contribute to normal movement strategies. Reflexes are provoked by stimulating specific pressure points with the body in specific positions e.g. baby lying supine with head turned to right, by applying pressure on the 6th intercostal space on the right and maintaining the position of the head, the baby should open both hands and drop her left shoulder as well as breathe deeper and longer. Mostly it works as they say it should but not always.
After only having one appointment in February (vaccinations and physio was ill) however our girls developed some bad habits -resisting all attempts to do the techniques effectively. Ciara threw herself into overextension which defeats the object of the technique, as she was supposed to flex her legs up to her trunk.
Needless to say we have been working for the last month trying to ease them out of these bad habits and still keep the momentum going forward. I'm not sure that we've managed that but at least Ciara hasn't been going into overextension the last few weeks.
I'm not sure if I explained the theory behind Vojta Therapy that clearly so I've included a couple of links that explain it a bit better
http://www.nidd.org/therapy_vojta.htm
http://www.vojta.com/cgi-local/ivg_eng.cgi
Where I live in Siegen, Vojta is the therapy of choice for babies and children with delayed development. It is a technique that was developed in Munich, Germany and the international headquarters are nowhere other than in our local Kinderklinik. Needless to say the doctors all swear by it and when we spoke to our paediatrician about changing to Bobath, he told us it was Vojta or nothing (In Germany therapy has to be prescribed by the doctors, therapists are not first line practitioners).
Vojta is a way of provoking reflexes that contribute to normal movement strategies. Reflexes are provoked by stimulating specific pressure points with the body in specific positions e.g. baby lying supine with head turned to right, by applying pressure on the 6th intercostal space on the right and maintaining the position of the head, the baby should open both hands and drop her left shoulder as well as breathe deeper and longer. Mostly it works as they say it should but not always.
After only having one appointment in February (vaccinations and physio was ill) however our girls developed some bad habits -resisting all attempts to do the techniques effectively. Ciara threw herself into overextension which defeats the object of the technique, as she was supposed to flex her legs up to her trunk.
Needless to say we have been working for the last month trying to ease them out of these bad habits and still keep the momentum going forward. I'm not sure that we've managed that but at least Ciara hasn't been going into overextension the last few weeks.
I'm not sure if I explained the theory behind Vojta Therapy that clearly so I've included a couple of links that explain it a bit better
http://www.nidd.org/therapy_vojta.htm
http://www.vojta.com/cgi-local/ivg_eng.cgi
Fighting
Sorry, I have not felt in the mood to post these past couple of days as we've been fighting to get Enya to drink. Before we started solids she was drinking 600+ml/day. Since Thursday we've been fighting to get her to drink over 400ml/day.
As soon as we put the teat in her mouth she starts arching away and moaning, if we rock her and talk to her we can normally get her to take 80-90ml but then she starts refusing to swallow. She eats her solids and laughs at us so it is not that her mouth is sore, I think she finds solids easier to cope with and would now like to be "on a solids only diet, thank you mommy". We have started mixing extra milk into her food to try get the milk down that way. She doesn't seem to have cottoned on yet but she is a smart little cookie, I wouldn't put it past her!
I'll be phoning the SLT on Tuesday to see if we can get an emergency appointment to see him next week but after the first appointment we had with him, I'm not expecting much help from him!
As soon as we put the teat in her mouth she starts arching away and moaning, if we rock her and talk to her we can normally get her to take 80-90ml but then she starts refusing to swallow. She eats her solids and laughs at us so it is not that her mouth is sore, I think she finds solids easier to cope with and would now like to be "on a solids only diet, thank you mommy". We have started mixing extra milk into her food to try get the milk down that way. She doesn't seem to have cottoned on yet but she is a smart little cookie, I wouldn't put it past her!
I'll be phoning the SLT on Tuesday to see if we can get an emergency appointment to see him next week but after the first appointment we had with him, I'm not expecting much help from him!
20 Mar 2008
Sad day
Z just phoned me to tell me that the JT, the little 23 weeker who was opposite us in the NICU, passed away on Monday. He fought for a long time, he would have been 6 months old next week.
Shit, life just isn't fair!
Shit, life just isn't fair!
19 Mar 2008
Last time ever
Well that's going to be the last time I ever boast about how well the girls are sleeping. What are they? Telepathic? They both woke up at 2am this morning and despite polishing off 240 (!!)ml, Ciara was awake and screaming at 6am again.
Tonight is my night out. I'm meeting a friend for coffee (tea) and a movie. We all just have to survive physio first!
Tonight is my night out. I'm meeting a friend for coffee (tea) and a movie. We all just have to survive physio first!
18 Mar 2008
Mommy's parsnip puree rules!
They love it!! They finished the jar and were looking for more (OK slight exaggeration but still). Ciara also ate more than 100g of my apple and rice puree- she is really getting into the solids now. With Enya, we're having to give the bottle first otherwise she doesn't manage 500ml over the day, this meant she is too full to eat much. I have started feeding them both at the same time: Ciara gets her solids first, then Enya gets her bottle, next Ciara gets her bottle and lastly Enya gets her solids. The entire procedure takes about 1 1/2-2 hours and then they usually crash. That means mommy gets to eat too;-)
The best thing about solids is that they are sleeping through from 19:30-04:00 for the last 4 days, the worst thing is that we are only getting 4 feeds in over the day. It doesn't help trying to wake them for a late night bottle as the last few times we tried this they only drank about 40ml. I can't believe I'm contemplating waking them when they are finally sleeping through!
The best thing about solids is that they are sleeping through from 19:30-04:00 for the last 4 days, the worst thing is that we are only getting 4 feeds in over the day. It doesn't help trying to wake them for a late night bottle as the last few times we tried this they only drank about 40ml. I can't believe I'm contemplating waking them when they are finally sleeping through!
17 Mar 2008
What's new
As promised a non whiny whingy post.
They loved my apple puree with baby rice, both girls ate more than 50g of it. So maybe my cooking isn't as bad as I think it is;-)
Enya is absolutely adorable when we feed her, we can't get the spoon to her mouth fast enough. She also opens her mouth really wide when we bring the spoon near so we can really load up the spoon with puree. She always grins during mealtimes as if to say finally something I can enjoy (bottle feeding remains difficult). She has started speaking more and has a beautiful shy smile which she is showing more frequently. She loves playing with her hands and is starting to chew on her fingers and fists (teething at 3 1/2 months??). When she gets excited she tramples with her legs so much that I'm not surprised she is not putting on weight any faster, she is going to have fantastic abdominal muscles as she lifts her bottom clear of the floor while kicking. She has also started trying to pull herself up into sitting (crunchies) or by pulling on the baby gym arch.
Ciara made a slower start on the eating front but has also learnt to open her mouth when the spoon approaches (she just bites down so quick so we often don't get the spoon between her teeth before she snaps shut). She is our little talker, I can often hear her lying chatting to herself after her nap. When she sees us she starts to shriek with joy, this is deafening if she lets rip while next to your ear. She has a gorgeous grin and a dimple in her right cheek, I just can't get enough of it., just as well she is such a happy baby. Ciara is such a chatterbox that towards the end of her bottle, she starts jabbering around the teat. But pity the poor parent that tries to take the bottle away, as she then throws a hissy fit. The chatter box has a remarkable variety of sounds she can make including ba and I love watching the shapes she forms with her mouth when talking. She now tolerates tummy time much better and is starting to reach out for toys in this position. She is able to roll from tummy to back in both directions.
I love these little goblins more everyday and am constantly amazed at how fast they are growing up. We've already had to pack two full boxes of baby clothes away and Enya is (finally) growing out of size 56 (english newborn size). I remember when Ciara came home in December that she barely fitted into the sleeping sac-it drowned her- and now I can barely close it for Enya. I need to keep reminding myself to enjoy everyday to the full as before I know it they will be terrible toddlers and the "terribler" teenagers!!
PS they are both sleeping through from 7pm to 5am YIPPEEEE!
They loved my apple puree with baby rice, both girls ate more than 50g of it. So maybe my cooking isn't as bad as I think it is;-)
Enya is absolutely adorable when we feed her, we can't get the spoon to her mouth fast enough. She also opens her mouth really wide when we bring the spoon near so we can really load up the spoon with puree. She always grins during mealtimes as if to say finally something I can enjoy (bottle feeding remains difficult). She has started speaking more and has a beautiful shy smile which she is showing more frequently. She loves playing with her hands and is starting to chew on her fingers and fists (teething at 3 1/2 months??). When she gets excited she tramples with her legs so much that I'm not surprised she is not putting on weight any faster, she is going to have fantastic abdominal muscles as she lifts her bottom clear of the floor while kicking. She has also started trying to pull herself up into sitting (crunchies) or by pulling on the baby gym arch.
Ciara made a slower start on the eating front but has also learnt to open her mouth when the spoon approaches (she just bites down so quick so we often don't get the spoon between her teeth before she snaps shut). She is our little talker, I can often hear her lying chatting to herself after her nap. When she sees us she starts to shriek with joy, this is deafening if she lets rip while next to your ear. She has a gorgeous grin and a dimple in her right cheek, I just can't get enough of it., just as well she is such a happy baby. Ciara is such a chatterbox that towards the end of her bottle, she starts jabbering around the teat. But pity the poor parent that tries to take the bottle away, as she then throws a hissy fit. The chatter box has a remarkable variety of sounds she can make including ba and I love watching the shapes she forms with her mouth when talking. She now tolerates tummy time much better and is starting to reach out for toys in this position. She is able to roll from tummy to back in both directions.
I love these little goblins more everyday and am constantly amazed at how fast they are growing up. We've already had to pack two full boxes of baby clothes away and Enya is (finally) growing out of size 56 (english newborn size). I remember when Ciara came home in December that she barely fitted into the sleeping sac-it drowned her- and now I can barely close it for Enya. I need to keep reminding myself to enjoy everyday to the full as before I know it they will be terrible toddlers and the "terribler" teenagers!!
PS they are both sleeping through from 7pm to 5am YIPPEEEE!
16 Mar 2008
Blah....
Butternut squash will not be featuring on the meal plan for the girls for the next little while. It definitely was not a success. Ciara retched a couple of times with the squash and even our little eat-it-all, Enya, only managed half her portion. I may need to thin it down or mix it with baby rice to dilute the taste even further when we try it again (the weaning book recommends trying again after a few weeks).
Our new scales arrived yesterday so we can monitor Enya's weight. Now that the baby massage course is over, I won't be seeing the hebamme again and the doctor doesn't want to see us for a couple of months hence no weighing for a while. I am not prepared to go that length of time without monitoring so we decided to invest in a set of scales. We've decided to weigh only once a week, tomorrow being the big day. I'm crossing fingers that Enya reaches 4.9 kg but am not holding my breath (sneak preview showed she had lost weight!!).
On that note our paediatrician basically told us we were overreacting to Enya's weight and that we should rather give her corn oil than concentrate her formula. My objection to this is oil will cause diarrhea (I was advised to give them oil when they were constipated for this reason) and his reasons not to concentrate don't make sense, so I will stick with concentrating the formula. The only reason I'm sticking with this paediatrician is he is very good from the neurodevelopmental aspect otherwise we would be looking for a new paediatrician.
I promise my next post will be a happier one with no whining or whinging in it!! I am so sick of my complaining but recently I just have been needing to unload and this is the easiest forum for it. Ende Gelaende, next time I will be more positive... promise.
Our new scales arrived yesterday so we can monitor Enya's weight. Now that the baby massage course is over, I won't be seeing the hebamme again and the doctor doesn't want to see us for a couple of months hence no weighing for a while. I am not prepared to go that length of time without monitoring so we decided to invest in a set of scales. We've decided to weigh only once a week, tomorrow being the big day. I'm crossing fingers that Enya reaches 4.9 kg but am not holding my breath (sneak preview showed she had lost weight!!).
On that note our paediatrician basically told us we were overreacting to Enya's weight and that we should rather give her corn oil than concentrate her formula. My objection to this is oil will cause diarrhea (I was advised to give them oil when they were constipated for this reason) and his reasons not to concentrate don't make sense, so I will stick with concentrating the formula. The only reason I'm sticking with this paediatrician is he is very good from the neurodevelopmental aspect otherwise we would be looking for a new paediatrician.
I promise my next post will be a happier one with no whining or whinging in it!! I am so sick of my complaining but recently I just have been needing to unload and this is the easiest forum for it. Ende Gelaende, next time I will be more positive... promise.
15 Mar 2008
Our little coffee addict
Well it's official. Enya failed her third attempt to wean from the caffeine. We had stopped the caffeine last week Thursday on the instructions of the Prof. Over the weekend we started seeing her oxygen saturation swinging, this progressively got worse until on Monday night we started getting alarms (we hadn't had any real alarms for about 3 weeks). Initially we thought it was just the old electrodes but even replacing them we still got a few alarms. On Tuesday evening we then started getting drops into the 60's (see, I told you day 5 was the bitch!!). At that point we'd had enough and restarted her on her caffeine. Within 20 mins the alarms had stopped and since then we've had an average of 98% O2 saturation. Z spoke to the Prof on Wednesday to tell him what he'd done and the consensus is now to let Enya outgrow the dose. She is only getting about 1/5 of the therapeutic dose but she needs that little bit. As our paediatrician said to me, she is not getting any side effects and it won't harm her, if she needs it until she goes to kindergarten, so what! She'll be the only kid in kindergarten who gets served a cappuccino with her breakfast.
The solids fest continues apace. They love carrots and pears are the best yet! I had to buy bibs with sleeves as Ciara eats with full body involvement. I spent this afternoon making puree for the next week for them, so cross fingers that they like all the new tastes coming their way. Debs sent me Annabel Karmel's new complete baby and toddler meal planner, she thinks it is the best book for weaning onto solids. So far the recipes are really simple (only steaming and pureeing fruit and veg) and the menu plan allows a couple of days of the same food so you can see if the baby reacts. Just as well I poured all the breast milk away that was filling our freezer, as I'm now going to start filling it with baby food. Poor Z!!
12 Mar 2008
Busy day
Poor Z is finally feeling better after being layed low by gastro for a few days. Just in time though for our mega therapy day. This morning we had our first Speech therapy (SLT) appointment for Enya to assess her feeding and in the afternoon we had physio for both girls.
I'm fairly shattered so I'll try keep this brief. I'm not sure how I feel about the SLT- it was all a bit wishy washy. Ciara, the little brat, only drank half her bottle at home before we left for the appointment, despite having just woken from a 10 hour sleep. So instead of watching how Enya was drinking the therapist got distracted by Ciara's cries of hunger and landed up giving her her bottle while I gave Enya hers. He (yup we have a male SLT-I've never met one before) did give us a couple of exercises to try and a teat to try but agreed that it is unlikely at this point we are going to get her sucking properly from a bottle. He feels she is however too young to try a cup, so we must continue as we have been doing. On the plus side he was very pleased with how she is eating her rice cereal (she managed 2/3 of a bowl there and then 1/2 a bowl this evening with carrot puree mixed in). We go back to see him in 3 weeks and in the meantime will try the exercises to stimulate sucking before bottle feeds.
While I was at SLT with the girls, Z was speaking to an acquaintence of ours who works as a doctor in the Social Paediatric Centre (SPZ). She does the preemie followup and he wanted to sound her out about the issues we've been having recently (in particular Enya's weight and physio). She agreed with us in most of the points we raised, only in the weight she said she found the irish reaction a bit overdone. At the same time she agreed with Debs that Enya needed to be getting 120kcal/kg (before we started concentrating the formula she was getting 86 kcal/kg). We now have an appointment with our paediatrician tomorrow to hear his view and to try get a prescription for the high calorie preemie formula.
Obviously Z chat with Dr B got back to our physio as she was wonderful today. She took off her Vojta gloves today and showed us some simple things we can do outside of our daily formal therapy sessions to encourage normal movements. She also revised the exercises that we've been doing as the girls have been protesting so vehemently agaist them, there could be no therapeutic benefits coming from them.
Operation Sleep is now just ashes. Ciara slept through last night but Enya has been up every 3-4 hours the last 2 nights. As Z had baby ban, I've not slept much and tomorrow is another wash out due to the doctors appointment. I know I shouldn't complain but I was so enjoying getting 6 hours sleep in one stretch that it's hard to accept this step backwards.
I'm fairly shattered so I'll try keep this brief. I'm not sure how I feel about the SLT- it was all a bit wishy washy. Ciara, the little brat, only drank half her bottle at home before we left for the appointment, despite having just woken from a 10 hour sleep. So instead of watching how Enya was drinking the therapist got distracted by Ciara's cries of hunger and landed up giving her her bottle while I gave Enya hers. He (yup we have a male SLT-I've never met one before) did give us a couple of exercises to try and a teat to try but agreed that it is unlikely at this point we are going to get her sucking properly from a bottle. He feels she is however too young to try a cup, so we must continue as we have been doing. On the plus side he was very pleased with how she is eating her rice cereal (she managed 2/3 of a bowl there and then 1/2 a bowl this evening with carrot puree mixed in). We go back to see him in 3 weeks and in the meantime will try the exercises to stimulate sucking before bottle feeds.
While I was at SLT with the girls, Z was speaking to an acquaintence of ours who works as a doctor in the Social Paediatric Centre (SPZ). She does the preemie followup and he wanted to sound her out about the issues we've been having recently (in particular Enya's weight and physio). She agreed with us in most of the points we raised, only in the weight she said she found the irish reaction a bit overdone. At the same time she agreed with Debs that Enya needed to be getting 120kcal/kg (before we started concentrating the formula she was getting 86 kcal/kg). We now have an appointment with our paediatrician tomorrow to hear his view and to try get a prescription for the high calorie preemie formula.
Obviously Z chat with Dr B got back to our physio as she was wonderful today. She took off her Vojta gloves today and showed us some simple things we can do outside of our daily formal therapy sessions to encourage normal movements. She also revised the exercises that we've been doing as the girls have been protesting so vehemently agaist them, there could be no therapeutic benefits coming from them.
Operation Sleep is now just ashes. Ciara slept through last night but Enya has been up every 3-4 hours the last 2 nights. As Z had baby ban, I've not slept much and tomorrow is another wash out due to the doctors appointment. I know I shouldn't complain but I was so enjoying getting 6 hours sleep in one stretch that it's hard to accept this step backwards.
11 Mar 2008
Fallen off the bottom of the chart
Whoops! I had a nice long chat with Debs last night (dietician friend who specializes in preemies) and she told me Enya has now fallen off the bottom of the growth chart i.e. under the 3 percentile line. The scariest thing is this is the preemie growth chart and adjusted for her age. When Enya was born she was on the 10 percentile line and should have maintained this position on the graph. Debs was so concerned she spoke to her consultant in the NICU about Enya, he immediately offered us an appointment for this morning saying he was also concerned and would like to see her. The only problem is he is in Ireland and we are in Germany, so no go. He did recommend with her history (grade 3+ brain bleed and problems sucking) she should have a MRI just to check everything is still OK on that side. That will be fun, I can't even get my paediatrician to do an ultrasound to check her kidneys as was recommended in her hospital discharge letter, now I have to try talk him into referring her for a MRI.
Everyone has been poopooing my worries and telling me I'm overreacting and now I find out I had every right to be concerned, I feel vindicated but more than that I feel let down by the doctors (and therapists) whose job it is to follow up this fragile micropreemie!! I'm now going to start getting bolshie with them as they have shown they are not worthy of the trust that I've been giving them. My paediatrician has not even plotted Enya's weight on a chart so he probably has no idea where she is sitting on the graph. She is sending me all the graphs so I will take that to the paediatrician and see what he has to say to that (in the hospital it was not much better as I can remember one nurse hunting for the growth chart to show me- she landed up starting a new one as she couldn't find the old one!!!!)
On the positive side solids are going well, Enya ate 1/3 of the bowl last night and seemed to really enjoy it. Ciara ate 5 spoons and would have had more but I was a little uncertain how far to push her. The only downside of the solids is they have no interest in the milk afterwards. Tonight I'm going to give them half their bottle before we give the baby rice.
Operation sleep has crashed and burned with the advent of solids as Enya is waking every 4 hours overnight (during the day she can go 6 hours between feeds). She has not drunk enough over the day to counterbalance the missed bottle after eating. My options are to try the solids around midday (recommended) or increase the amount of milk she gets per feed (very difficult). I'll see how tonight goes and how the SLT appointment tomorrow goes and then decide.
Everyone has been poopooing my worries and telling me I'm overreacting and now I find out I had every right to be concerned, I feel vindicated but more than that I feel let down by the doctors (and therapists) whose job it is to follow up this fragile micropreemie!! I'm now going to start getting bolshie with them as they have shown they are not worthy of the trust that I've been giving them. My paediatrician has not even plotted Enya's weight on a chart so he probably has no idea where she is sitting on the graph. She is sending me all the graphs so I will take that to the paediatrician and see what he has to say to that (in the hospital it was not much better as I can remember one nurse hunting for the growth chart to show me- she landed up starting a new one as she couldn't find the old one!!!!)
On the positive side solids are going well, Enya ate 1/3 of the bowl last night and seemed to really enjoy it. Ciara ate 5 spoons and would have had more but I was a little uncertain how far to push her. The only downside of the solids is they have no interest in the milk afterwards. Tonight I'm going to give them half their bottle before we give the baby rice.
Operation sleep has crashed and burned with the advent of solids as Enya is waking every 4 hours overnight (during the day she can go 6 hours between feeds). She has not drunk enough over the day to counterbalance the missed bottle after eating. My options are to try the solids around midday (recommended) or increase the amount of milk she gets per feed (very difficult). I'll see how tonight goes and how the SLT appointment tomorrow goes and then decide.
10 Mar 2008
Uh oh day four
Today is day 4 without caffeine and we are noticing it. After weeks of no real alarms, last night we had a spate of alarms. Previously the oxygen saturation (sats) was always the reason for the alarms, but last night they were all apnoea alarms, the sats were always above 96% (i.e. normal). So the question arises should I believe the alarms were real? I find it too much of a coincidence that this has happened 4 days after we stopped the caffeine. I believe that Enya now has enough reserves that she doesn't immediately desat when she has a pause in her breathing (previously her sats used to nosedive to 50-60%). We are going to bath her tonight so we will renew all her electrodes and sensors and then see how tonight goes.
On the feeding front, I spoke with a friend that works as a dietician specializing in preemies and newborns. She was very surprised (dare I say shocked) to hear Enya wasn't on a high calorie preemie formula and that she hadn't been assessed by a speech therapist. She suggested if we can't get a special preemis formula prescribed that we concentrate the formula a little bit just to increase the calories/100mls. She did however second my doctor's advice to start them on solids. In Ireland preemies start solids 5-7 months after birth and our girls are going to be 7 months old on Friday (doesn't time fly!).
So last night we started with rice cereal mixed with formula and Enya ate TEN SPOONFULS!!! Ciara wasn't that impressed and only ate two spoons before she started spitting it back at me. Even so it was a very successful start and hopefully it continues like this. In the next few days I'll start adding veg to the rice cereal, one veg at a time every few days and see how they like it. I'm hoping with them eating some solids Operation Sleep will show more progress. We are back to waking up 5 hours after their last feed again (4am this morning and both at the same time!).
On my side I'm feeling a lot less stressed after the weekend, Z sent me out on Saturday while he looked after both girls. I managed to get quite a bit done shopping wise including a footstool for my rocker and the stuff (cereal, jars of baby food, soft spoons etc.) to start feeding. He even cooked dinner when I came home, he is such a sweetheart and enjoys cooking to boot. He also wants me to get out the house one night a week, so I'm starting yoga with a friend this week. Having a baby (or two) in the NICU is great for losing the baby pounds (not that I'd wish it on anyone) but now that they are both home the kilos are piling on.
On the feeding front, I spoke with a friend that works as a dietician specializing in preemies and newborns. She was very surprised (dare I say shocked) to hear Enya wasn't on a high calorie preemie formula and that she hadn't been assessed by a speech therapist. She suggested if we can't get a special preemis formula prescribed that we concentrate the formula a little bit just to increase the calories/100mls. She did however second my doctor's advice to start them on solids. In Ireland preemies start solids 5-7 months after birth and our girls are going to be 7 months old on Friday (doesn't time fly!).
So last night we started with rice cereal mixed with formula and Enya ate TEN SPOONFULS!!! Ciara wasn't that impressed and only ate two spoons before she started spitting it back at me. Even so it was a very successful start and hopefully it continues like this. In the next few days I'll start adding veg to the rice cereal, one veg at a time every few days and see how they like it. I'm hoping with them eating some solids Operation Sleep will show more progress. We are back to waking up 5 hours after their last feed again (4am this morning and both at the same time!).
On my side I'm feeling a lot less stressed after the weekend, Z sent me out on Saturday while he looked after both girls. I managed to get quite a bit done shopping wise including a footstool for my rocker and the stuff (cereal, jars of baby food, soft spoons etc.) to start feeding. He even cooked dinner when I came home, he is such a sweetheart and enjoys cooking to boot. He also wants me to get out the house one night a week, so I'm starting yoga with a friend this week. Having a baby (or two) in the NICU is great for losing the baby pounds (not that I'd wish it on anyone) but now that they are both home the kilos are piling on.
9 Mar 2008
Caffeine update
In all the stress about other things I completely forgot to mention the Prof finally got back to us about the analysis from the monitor download. He said it showed nothing to worry about and that we could stop the caffeine immediately (no gradual reduction). Unfortunately Z took the phone call and didn't try and get any more details about what the download did actually show- this is why it irritates me that we just got a phone call. Next time we are going to get the results during a face to face meeting. He wanted us to come back for another download in 3 months, but here Z did put his foot down, so we are going back in 4 weeks instead.
Today is day 3 without caffeine but on past experience (this is the third attempt) day 5 is where the shit hits the fan. So wish us luck!! We want to stay rid of the caffeine and hopefully still get sleep. Dare I say it, if we are really lucky we get rid of the blasted monitor in 4 weeks as well. Hey a girl's got to have hope, doesn't she?
Today is day 3 without caffeine but on past experience (this is the third attempt) day 5 is where the shit hits the fan. So wish us luck!! We want to stay rid of the caffeine and hopefully still get sleep. Dare I say it, if we are really lucky we get rid of the blasted monitor in 4 weeks as well. Hey a girl's got to have hope, doesn't she?
7 Mar 2008
ENT visit
Yeterday we had our long awaited ENT visit with Enya. The doctor was lovely and even better we were seen on time (actually a bit early). Unbelieveable but true, we were finished and sitting in our car half an hour after our appointment time. This is very important as we find it very difficult to get back on schedule when it's been disrupted due to appointments (of all sorts). We couldn't choose the time for yesterdays appointment so it was at a feed time and in the end Ciara sill only had 4 feeds yesterday-she drank about 100mls less than we aim for but not too bad under the circumstances. Operation sleep took a bit of a pounding as well with Enya waking up at 3am for a feed, at least she drank well so her days target was spot on ;-)
The results from the ENT were very positive. We don't have any anatomical reason for Enya's difficulty feeding, she even scoped her vocal cords as we mentioned that her voice got a lot quieter after the 2nd intubation. The soft palate, toungue and vocal cords are all moving symmetrically and appropriately so she thinks the problem is lack of co-ordination and muscle strength.
This now makes it all the more urgent that we get into see the SLT (speech and language therapist), I called them last week and was told it would likely be another 3 weeks before we get called for an appointment. This is a child with difficulty feeding and she has to wait 6 weeks for an appointment! I am so cross that I didn't stand my ground when we were still inpatients when I asked for a SLT referral. I was fobbed off with physio would solve the problem by improving the co-ordination (I'm a physio, I know how little I can help with swallowing difficulties!! My only excuse is I only treat adults and paeds is definitely a speciality all of it's own). I'm going to ring again today and see if I can't get an urgent appointment. In the meantime I fear we are only making the problem worse, as we can only get the amount down which Enya should be drinking, by assisting her. We press on the teat in time with her chewing motions so she gets milk (she doesn't suck at all now only chews). The problem is if we stop doing this she loses all interest in the bottle and starts pushing the teat out her mouth and then we've really lost. We have to then wait about an hour before we can try again. I'm pinning a lot of hope on the SLT, it can't come soon enough.
Last note: we have decided to wait for another couple of weeks before trying solids as I feel, and everything I've read on the internet backs me up, they should only start solids at 4 months adjusted.
The results from the ENT were very positive. We don't have any anatomical reason for Enya's difficulty feeding, she even scoped her vocal cords as we mentioned that her voice got a lot quieter after the 2nd intubation. The soft palate, toungue and vocal cords are all moving symmetrically and appropriately so she thinks the problem is lack of co-ordination and muscle strength.
This now makes it all the more urgent that we get into see the SLT (speech and language therapist), I called them last week and was told it would likely be another 3 weeks before we get called for an appointment. This is a child with difficulty feeding and she has to wait 6 weeks for an appointment! I am so cross that I didn't stand my ground when we were still inpatients when I asked for a SLT referral. I was fobbed off with physio would solve the problem by improving the co-ordination (I'm a physio, I know how little I can help with swallowing difficulties!! My only excuse is I only treat adults and paeds is definitely a speciality all of it's own). I'm going to ring again today and see if I can't get an urgent appointment. In the meantime I fear we are only making the problem worse, as we can only get the amount down which Enya should be drinking, by assisting her. We press on the teat in time with her chewing motions so she gets milk (she doesn't suck at all now only chews). The problem is if we stop doing this she loses all interest in the bottle and starts pushing the teat out her mouth and then we've really lost. We have to then wait about an hour before we can try again. I'm pinning a lot of hope on the SLT, it can't come soon enough.
Last note: we have decided to wait for another couple of weeks before trying solids as I feel, and everything I've read on the internet backs me up, they should only start solids at 4 months adjusted.
5 Mar 2008
Calmer (sort of)
Today is also not going to well. Neither girl is particularly interested in their bottles (Ciara has just drunk 30 mls for her 2pm feed, THIRTY millilitres- she normally drinks 130mls!!!). I'm hoping this is just due to the injections yesterday and things improve (rapidly!!). They are both miserable and I can't soothe them. Ciara had a slight temperature last night but it is normal again today.
What I didn't say about yesterday is that the doctor (our paediatrician) would like us to start solids immediately. I had been planning on starting at the end of the month when the girls were 4 months adjusted (and my mom brought me the books on weaning that I had ordered). The doctors view was that unlike the brain, the intestine matures just like a full time baby's and they have been coping with milk for nearly 7 months so it is time to offer them something more. The added benefits he said were that they get more vitamins and minerals in solids (wean off the iron supplement WOO HOO!) and with fruit purees we won't have so much trouble with constipation.
I have spoken with my Hebamme (german version of midwife and child nurse all rolled into one) and she has advised me to start with whole grain porridge, one or two teaspoons in the evening. I'm supposed to try increase the number of teaspoons every day and then after a fortnight try replace the evening milk bottle with tea. Hold thumbs that it all works as easily as she said it should.
About my Hebamme. I really respect and am grateful for this lady- she saw me prenatally and also helped me tremendously during those very difficult first weeks after the girls were born- staying for an hour just talking to me and letting me let everything out. She has also offered to swing by and weigh the girls whenever I want (we only got 6 weeks post discharge follow up care prescribed by the doctors- in Germany all follow up care/therapy has to be prescribed).
I am also doing a baby massage course with her. Up to now most of the handling the girls have had has been either during medical intervention or therapy and I wanted something which the girls could relax and enjoy. The only problem is in the classroom there is too much stimulation for Ciara and she usually freaks out (think complete meltdown-inconsolable!). When we do the massage at home she really enjoys it. We only have one more week and I now just need to find someone I can leave Ciara with so I can participate in the last class. I usually spend at least half the time soothing/comforting Ciara, once I have soothed her down she usually immediately drops off to sleep-her way of dealing with the overstimulation I think. The other moms also find it hard to concentrate with at least one baby joining in and crying in sympathy, which I also think is unfair to them.
Speaking of inconsolable Enya is screaming now so I guess I'd better sign off. Thank goodness we have no more injections for the next 6 months (except maybe our last RSV immunisation at the end of this month).
What I didn't say about yesterday is that the doctor (our paediatrician) would like us to start solids immediately. I had been planning on starting at the end of the month when the girls were 4 months adjusted (and my mom brought me the books on weaning that I had ordered). The doctors view was that unlike the brain, the intestine matures just like a full time baby's and they have been coping with milk for nearly 7 months so it is time to offer them something more. The added benefits he said were that they get more vitamins and minerals in solids (wean off the iron supplement WOO HOO!) and with fruit purees we won't have so much trouble with constipation.
I have spoken with my Hebamme (german version of midwife and child nurse all rolled into one) and she has advised me to start with whole grain porridge, one or two teaspoons in the evening. I'm supposed to try increase the number of teaspoons every day and then after a fortnight try replace the evening milk bottle with tea. Hold thumbs that it all works as easily as she said it should.
About my Hebamme. I really respect and am grateful for this lady- she saw me prenatally and also helped me tremendously during those very difficult first weeks after the girls were born- staying for an hour just talking to me and letting me let everything out. She has also offered to swing by and weigh the girls whenever I want (we only got 6 weeks post discharge follow up care prescribed by the doctors- in Germany all follow up care/therapy has to be prescribed).
I am also doing a baby massage course with her. Up to now most of the handling the girls have had has been either during medical intervention or therapy and I wanted something which the girls could relax and enjoy. The only problem is in the classroom there is too much stimulation for Ciara and she usually freaks out (think complete meltdown-inconsolable!). When we do the massage at home she really enjoys it. We only have one more week and I now just need to find someone I can leave Ciara with so I can participate in the last class. I usually spend at least half the time soothing/comforting Ciara, once I have soothed her down she usually immediately drops off to sleep-her way of dealing with the overstimulation I think. The other moms also find it hard to concentrate with at least one baby joining in and crying in sympathy, which I also think is unfair to them.
Speaking of inconsolable Enya is screaming now so I guess I'd better sign off. Thank goodness we have no more injections for the next 6 months (except maybe our last RSV immunisation at the end of this month).
4 Mar 2008
Stress
I've had a really stressful day and am so frustrated as nothing has gone as I wanted.
I deliberately fed the girls a bit earlier last night so that we would get a 4am feed and then a 8 am feed in but I have done my "sleep in" training a bit too well. They woke at about 6am which meant that they were due for their next feed while we were at physio.
The physio appointment was with our old physio (RATS!!) and had to be moved forward to 9:30 as she takes 2 hours to treat the girls (most of this is taken up with inane chatter that has nothing to do with my girls or their physio) and we had a doctors appointment in another part of town at 12. What was frustrating here is she arrived nearly half an hour late so we had time to treat Ciara and 15 minutes left for Enya. She also said (repeatedly) she would never have done things this way, as it was too much stress for the girls to have physio and a doctors appointment on the same day. Yes it was ,but if she hadn't wasted so much time with irrelevent babble, we could have looked at my technique so I could confidently treat the girls next weekend. Instead she said everything we were shown last week I'm doing wrong, however she would wait until next week sometime to correct it. YUP- once again no definite appointment for next week. I'm to blame though as I chickened out of telling her we want to change physios!!
I managed to get to our doctors appointment on time (I hate being late as I know how irritating it is to wait for your next patient), and gave Enya her bottle there, 2 hours late (she only drank 80mls of it-we aim for min of 100ml). That appointment went well with the doc (ex chief of the developmental center with loads of preemie experience) saing he thought it looks like we could come away from this preemie business without too many ill effects (YAYY!!)
When I finally got home neither girl was particularly interested in their next bottle and so it has remained for the rest of the day. Enya has not even reached 400mls yet and we only have one more feed to go (aim is 600mls). In part it could be due to the vaccinations they got today but also due to the appointments coinciding with meals everything has been thrown off kilter. I could throw things (promise I will not throw babies no matter how tempting;-)).
Okay rant over and I'm feeling better for it. I have the day off tomorrow from appointments and no home physio treatments for 3 days-HOLIDAY !! (sort of)
I deliberately fed the girls a bit earlier last night so that we would get a 4am feed and then a 8 am feed in but I have done my "sleep in" training a bit too well. They woke at about 6am which meant that they were due for their next feed while we were at physio.
The physio appointment was with our old physio (RATS!!) and had to be moved forward to 9:30 as she takes 2 hours to treat the girls (most of this is taken up with inane chatter that has nothing to do with my girls or their physio) and we had a doctors appointment in another part of town at 12. What was frustrating here is she arrived nearly half an hour late so we had time to treat Ciara and 15 minutes left for Enya. She also said (repeatedly) she would never have done things this way, as it was too much stress for the girls to have physio and a doctors appointment on the same day. Yes it was ,but if she hadn't wasted so much time with irrelevent babble, we could have looked at my technique so I could confidently treat the girls next weekend. Instead she said everything we were shown last week I'm doing wrong, however she would wait until next week sometime to correct it. YUP- once again no definite appointment for next week. I'm to blame though as I chickened out of telling her we want to change physios!!
I managed to get to our doctors appointment on time (I hate being late as I know how irritating it is to wait for your next patient), and gave Enya her bottle there, 2 hours late (she only drank 80mls of it-we aim for min of 100ml). That appointment went well with the doc (ex chief of the developmental center with loads of preemie experience) saing he thought it looks like we could come away from this preemie business without too many ill effects (YAYY!!)
When I finally got home neither girl was particularly interested in their next bottle and so it has remained for the rest of the day. Enya has not even reached 400mls yet and we only have one more feed to go (aim is 600mls). In part it could be due to the vaccinations they got today but also due to the appointments coinciding with meals everything has been thrown off kilter. I could throw things (promise I will not throw babies no matter how tempting;-)).
Okay rant over and I'm feeling better for it. I have the day off tomorrow from appointments and no home physio treatments for 3 days-HOLIDAY !! (sort of)
2 Mar 2008
Deluge over
It looks like it was only a 24 hour bug and Enya either got it very lightly or got off scott free! What I find interesting is that in the past when a problem arose, Enya was always the worst affected (NEC scare- Ciara off feeds for one day, Enya off and on for a week; ROP- Ciara grade 2 then resolved, Enya needed lasering; Ventilation- Ciara one day,Enya 2 weeks and one day) but tummy wise Ciara is now the more sensitive. It's going to be even more interesting when we start them on solids.
Another full week ahead of us so I'm going to go relax before the next feed and then straight to bed.
Another full week ahead of us so I'm going to go relax before the next feed and then straight to bed.
1 Mar 2008
Squirts
Need I say more!?!
Ciara has needed her nappy changed at least every feed- our record is 3 times during one feed. At least she is also drinking lots (of rehydration solution)- our new record is 295ml in one feed!
Enya still okay but as our doc said what one gets the other will get too :-(
Ciara has needed her nappy changed at least every feed- our record is 3 times during one feed. At least she is also drinking lots (of rehydration solution)- our new record is 295ml in one feed!
Enya still okay but as our doc said what one gets the other will get too :-(
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