coffee free

I haven't written about this up to now because we've been doing this off our own bat, but for the last month or so we've been gradually reducing Enya's caffeine. Only by 1mg per week but it has been a steady decrease without any sats swinging. She gto her last dose of 1mg yesterday morning and we are now hoping that we will remain coffee free!!

The best part of this is we told the Prof we will be keeping the monitor for another 2 weeks and if she remains as steady as she has been up to now (sats average overnight of 98-99%) we will stop using it, and he agreed!!

Now on to something completely unrelated, yesterday was a public holiday here in Germany and we had a group of friends over for the first time since the girls were born. It is traditional here to go for a walk on May Day with the whole family and friends, usually dragging a little wagon filled with beer and with a small tree covered in ribbons. As we live in easy reach of forest (who doesn't in this neck of Germany!) they all met here before we set off on our walk, with 10 adults and 7 kids it was hard keeping everyone together but it was glorious weather and fun was had by old and young alike. After the walk we stopped briefly in the local park before all coming back to our house to grill (our 2nd BBQ of the season). I have never met a nation so fond of BBQs as the Germans!! I will post photos as soon as I get around to it.

The girls were completely overwhelmed/overexcited with so many people here and so got completely out of their schedule, which resulted in the first 3am feed in 2 weeks :-( . Although on the plus side it means for the first time in ages we got more than 600ml into them in a day ;-).

We are away this weekend-off to Munster to visit friends as a trial run for our holiday at the end of this month. We want to see how the girls cope with new beds, new sights and sounds and how we manage (what we can't live one week without)out of our home. Wish us luck as it's a 2 hour drive to Munster!!

Quick rant

Finally got my computer back from my husband. He hijacked it to do some work on. He stayed home from work yesterday morning so he could take Enya to the hospital for the feedback about the apnea monitor download. We had deliberately made the appointment for a week after the download so that the Prof would have time to evaluate the results and we could have a face to face discussion about what he thinks is the next step.
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

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!!

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.

Hmmmm

And the result was........

nothing.

We have to wait for the monitor download to be evaluated before any changes are made. The Prof did say again that Enya is on a "homeopathic" dose of caffeine which makes me think he will definitely be dropping it. We now have to wait until next week and the results/further instructions will be given on the telephone-not sure I like that.

On the upside we also got our RSV immunisation today, as we were at the Kinderklinik with both girls and so were all the materials needed, we should have gotten it tomorrow. It was a bit stressful, as the kids had to have their physio session first (after any immunisations or vaccinations we have to have a 3 day break from physio- a holiday for me) and then we had to run back to the OPD for the injection before the vaccine expired (2 hours). Enya landed up getting fed on our walk through the Klinik.

We had a really good physio session with lots of new things to work on. Our usual physio was sick so we were seen by a different physio, one who had last seen us during our NICU time. She was amazed (says the proud mother) at what our girls can do, especially Enya. Some movements that Enya demonstrated today she said are only expected at 8 months (the girls are 3 months corrected). Our little baby who we were so worried about, due to her grade 3+ IVH (bleed in to a ventricle in the brain), is ahead of her sister in some milestones. I couldn't be prouder. What I liked most about this session was that the physio took the time to see what our girls were doing i.e. the quality of their movements and what activities they could do eg. rolling.

I would say all in all a positive day and I have a free day tomorrow now ;-)

Cross fingers

Tomorrow we have the all important appointment with the Prof. I don't know why I'm so excited, I know what he's going to say: no more caffeine (= no sleep for Nix due to constant alarms) and monitor stays for another 3 months :-(. Maybe I'll be surprised but I doubt it. Wish us luck!!

On to the sleep update: slept through until 4am(Ciara) and 5am (Enya) from 10pm. Cross fingers that tonight goes as well, tomorrow we have a long day with physio after the doctors appt.

I love the monitor..not

Enya is still taking caffeine to stimulate her respiratory center. Since her discharge from hospital in December we have even had to increase her dose (she was supposed to be growing out of the dose). I find this a bit worrying as I have yet to find another micro preemie blog where the baby was discharged still needing caffeine, oxygen yes but none on caffeine (update:I asked on a preemie forum and found a couple of other babies that also needed caffeine after discharge- we are not alone!!). Until we are rid of the caffeine we need the monitor and how I loathe the thing. Even if one ignores all the nights of interrupted sleep due to false alarms, it is still a constant reminder of the hell that we have been through.




When Enya first came home she was constantly cycling (sats going up and down), particularly after the 2 am feed and there was nothing we could do. She was discharged from hospital without oxygen (the desats are of short enough duration that although they set the alarm off, she still maintains an average saturation of over 90% measured over an hour) which meant we just had to stand by her bed and watch helplessly as the sats rose and fell again. Thankfully increasing the caffeine seemed to partly remedy this, she still desatted (and still does) but less frequently and the period under 85% saturation is often so short that the monitor doesn't alarm.

Interesting side note: when we increased the caffeine the Prof (head of our neonatalogy unit) said the caffeine wasn't doing anything for her and her breathing as she was older that 44 weeks. We could take her off immediately without any ill effect but to keep her on until we see him at the end of Feb. However we noticed a distinct improvement in the cycling and the frequency of the alarms once we had increased the dose. See the big guys don't always know everything.

We have stopped connecting the monitor during the day with the agreement of our paediatrician, as we've discovered if she is awake and moving the monitor doesn't read properly-e.g. she was throwing a wobbly and the monitor was reading sats of 50%. When I held her leg still suddenly her sats were by 96%, when I let her leg go back down around 50%. This does not inspire confidence in the monitor!! I contacted the company that supplied it, to find out if this is normal or could it be faulty, their advice was to put the sensor on the big toe- hello this is a 4 kg preemie we're talking about, how do I fit the sensor (made to fit on an adult finger) on her big toe??? Also if I carry her with the monitor on it starts to alarm due to the movement of the cables!!


I still "plug" Enya in when we drive anywhere, not that we've been further than the doctor or the hospital in the last 2 months, and that is the worst of the monitor. When we're driving the monitor alarms almost continuously. I have tried Enya in the car seat at home attached to the monitor and her sats are mostly above 95% (she hates the car seat if we're not actually driving and starts thrashing around so her sats do drop due to the movement) but driving is dreadful. I can't definitely say it is due to the vibrations when we are driving as when we are stopped at traffic lights it sometimes continues to alarm. For this reason I still connect her when driving. that said I hate driving alone with her as my heart sinks every time it starts to alarm because as mentioned before apart from taking her out the car seat I have no options.

On the plus side we have an appointment with the prof tomorrow and I know he will say stop the caffeine. So we could be getting rid of the caffeine for good or I could be in for a stressful few days with no sleep until we restart the caffeine. Wish us luck!

Echo

And the cycle of doctors visits continue...

Today we went with both girls to the cardiologist for repeat echos (heart ultrasound) to check if the hole between the two chambers of the heart is still there annnnnnd (drum roll please).......... it is, in both cases!!

However the cardiologist said it was nothing to worry about, the chances are still very good that it will close itself in the next few months as the girls are only 2 and a half months-corrected age. She also said even if it doesn't close, approximately 10% of the population is walking around with this and don't even know it. The only times it becomes medically relevent is if we have a history of clotting disorders (we don't) or if the girls want to go diving (not this year).

Other than that the hearts look really healthy-even Enya's showed no signs of the extra strain placed on it by the 2 months where she still had the PDA. In the last week we have also had a few alarms on Enya's monitor due to a low heart rate (under 80bpm) when she is sleeping. When I mentioned this to the doc this morning the immediate reaction was the alarm limit is set too high and we must reduce it to 70. Unfortunately we can't change the settings on the monitor so it will have to wait until next week when we have the monitor downloaded. At least now when I read low heart rate alarm, I don't need to panic!

The best news is we don't have to go back until the girls are in kindergarten. Even then it is just a check so we can warn the girls later that they have this condition should they want to go deep sea diving.

Other news: last night was one of the worst nights for sleeping in a long time. Enya's monitor kept beeping but none of the alarms were real. An electrode had some how become detached and was sticking to her vest and so the monitor kept showing apnoea or unable to read the heart rate. I wasn't prepared to wake her up to undress her and stick new electrodes on so at 3 am I landed up turning off the monitor. She woke an hour later for her feed so it is not as if she was long without the monitor. Besides during the day we hardly ever put the monitor on as it is so sensitive to movement that it alarms continuously when Enya is awake- she is a little wriggle bottom, just like her big sister.