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.
10 Mar 2008
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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