28 Feb 2008
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 ;-)
27 Feb 2008
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.
26 Feb 2008
Ta dum......Ciara slept until 3:45 and Enya until 7:00. Needless to say we are going to keep trying this and I will keep you updated (especially you Jackie, so you know what to expect before your summer visit;-)).
24 Feb 2008
22 Feb 2008
During the day I have one awake while the other is fast asleep. They must be telepathic because just as the one drops off the other starts screaming! Right now Enya has just dropped off in her rocker and Ciara is starting to yell.
At night they go to bed at around 19:30 but then Enya wakes for a feed at around midnight and Ciara waits until 02:00 for her last feed. The next feed is usually at around 05:00-06:00 for Enya and Ciara wakes around 07:00. All this means very little quality sleep for the parents. I'm really tired but at the same time I wouldn't give the girls up for all the "sleep" in China.
OK, whinge over, on to more exciting things. I now have two thumbsuckers. Enya has also started sucking her thumb when she is hungry (Ciara started about 2 weeks ago). The only problem is Enya has a overactive gag reflex, so sometimes she starts to retch when she sticks her thumb in her mouth, poor thing. We are not actively encouraging thumb sucking but with Enya it is a bit easier as she can't hold a dummy long in her mouth. The thumb she can't keep losing and we don't have to stand beside her holding it in or fishing it out of her bed.
20 Feb 2008
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.
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!
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.
19 Feb 2008
The advantage of the early appointment was we were seen quickly for the actual EEG and the wait for the follow up discussion was also only an hour. I find for a doctors appointment that was quite acceptable. We were finished by 10am and home in time to help finish Enya's feed (my sister is visiting and she had the dubious pleasure of babysitting and trying to feed Enya)
I was amazed at how well behaved Ciara was during the EEG, she had to sit reletively still for 8 minutes and she managed it (this is the baby who is always wriggling about, they used to "strap" her down in the incubator). They gave us a toy that crackles when you rub it as a distraction and it kept her fascinated for the 8 minutes (we have a similar toy on the playmat at home, which I keep trying to use as distraction during the dreaded tummy time but it had never worked till today. Yup, after the success during the EEG I came directly home and tried it out-25 minutes tummy time with no temper tantrum!!)
We were told the EEG still shows immature activity but nothing to worry about in view of the extreme prematurity. There was no sign of fitting but we are to go back in 6 months for another control.
We are also going in May with Enya as her EEG in hospital showed a tendency to fitting (?) although no actual fits. We personally have seen nothing suspicious since her first week post-discharge but we are told it is better to keep a close eye on them both with regular controls until they are about 3-4 years old.
Tomorrow is another early start, both girls are having an echo to see if they still have an atrial septal defect (ASD-hole between two chambers in the heart). As I said it's all go for the next few weeks.
18 Feb 2008
We were transferred to the ICU in the Childrens' hospital and hated it. It was a huge change from the intimate unit where we'd been before, where we knew all the staff and the doctors were always available and would very often update us personally when we arrived. The ICU was large, loud and inpersonal. I very often used to arrive and not see the nurse responsible for our room for an hour or two. What I found most frustrating was that it often took a while (5 minutes? or so it seemed) to respond to desat alarms (bradycardia alarms were always reacted to immediately although by this time they were very rare). It is incredibly hard to stand by while your child's sats are sitting in the 60's and no one is reacting. In their defence the nurses admitted they are vastly understaffed in the ICU and requested that we put in a complaint as they say that is the only way to get the staffing levels increased. Our girls used to delight in taking it in turns as soon as one's sats reached 85% the other's would drop- it was not for nothing they were called the Bimmel princesses (bimmel=german slang for the sounds made by the monitor alarms).
Around this time Enya had another Echo (cardiac ultrasound) which showed....the PDA was gone!!!!!No operation required! Boy were we relieved!
However then the next problem began to get acute- both girls had ROP diagnosed in September (Retinopathy of Prematurity- where the blood vessels in the eyes grow too much and can grow into the len, in severe cases it can cause retinal detachment and blindness) but where Ciara remained stable at grade 2, Enya progressed in the direction of grade 3 where she would need lasering to destroy the new blood vessels. This meant once or twice weekly controls which were traumatic at the best of times and even more so when I landed up having to hold Enya's head still so the doctor could check her retinas (involved clamps to hold her eyes open and a probe to keep the eye still).
By the end of October they were both off the supplementary oxygen and a week later Ciara got rid of her NG tube and stopped getting caffeine to stimulate her breathing and cardiac control centre. She was no longer an intensive care patient!!
We were then transferred to the infants general ward in the middle of November and thought we could possibly be going home in the next few weeks until...
Enya needed lasering on her eyes. It was done in Essen about 2 hours away from the city we live in and involved an incubator ambulance transport and a 3 day stay in Essen (we got to stay in the Ronald McDonald House there- what a fantastic idea that is, it is only when you need it that you understand what a relief it is to have such a facility available). We thought we were just going for a control/second opinion as our eye doctor was on holiday for 3 weeks. When we got there the professor took a careful look at Enya's eyes and said she would be first on the list for lasering the next day. Gulp! Okay off to the PICU with Enya. The lasering went really well and Enya came off the ventilator without any problems so that worked out positive, she just needed eyedrops to dilate her pupils and hydrocortisone cream for her eyes for four weeks post op.
When we got back home it was to the question when would we like to take Ciara home, we had hoped we could take both girls home together but Ciara was ready for discharge where Enya still had her NG tube and was till needing Caffeine to stimulate her breathing centre. Ciara had actually been ready for discharge since the 26th of November (my original due date)but as we have no family in the area and no one who could look after Ciara if I went in to visit Enya we pushed for her to be allowed to remain longer. We didn't want to bring one girl home and land up having to neglect the other.
In the end we took Ciara home in the middle of December as my mother came out from England for 10 days to help and Mr Z got a months leave. We had to push but Enya ended up coming home just after christmas, despite still needing her twice daily dose of caffeine (she is the first baby they have ever discharged still on caffeine!!). They pulled her NG tube 2 days before discharge and although she was only barely managing her minimum daily amount of milk, the decision was made to discharge without a NG tube. Unfortunately there was no assessment of her feeding made and this has meant a great deal of stress for us in the last 7 weeks, we are still fighting everyday to make sure she drinks a minimum and she has continued to fall behind her sister weight wise (a post on feeding later). Enya also came home with a monitor that records her heart rate, breathing rate and saturations level as they feel she is a high risk baby- the monitor had been ordered long before they knew that she was going to be coming home still on caffeine.
I think that this is a fair summary of our time in hospital, just touching on the highlights!
Since then the girls have been back to the hospital for their weekly physio session (I get shown what to do with them for the next week) and for their RSV vaccination (Respiratory Syncitial Virus- can be fatal for premature babies) and will be going back lots more in the next few weeks for various checkups.
15 Feb 2008
14 Feb 2008
On the third day we got faced with a good news ,bad news situation. Good news: Enya was no longer being ventilated, she'd progressed onto CPAP. Bad news: she had been unstable overnight with high blood sugars needing insulin and variable blood pressure, due to this they had done a head ultrasound and she'd had a grade 3+ bleed into her right ventricle (IVH grade3+). It took me a couple of weeks to come to terms with this diagnosis, because the prognosis was and still is so uncertain. Thankfully in the following ultrasounds there was no further bleeds and no drainage problems in the ventricles which would require surgery.
We were really lucky as the unit we were in really encouraged kangerooing with the babies, we were able to start with Ciara on the third or fourth day. With Enya we had to wait about a week before we were allowed to begin (isn't it dreadful that I don't know when we got to hold them for the first time- in my defence I was still in shock at what had happened). As long as the girls had a bit of a break we were even encouraged to cuddle twice a day with them.
For the next week everything seemed to be going well with them both and we hoped that the worst was over and then the s#!t really hit the fan. After a good morning where I had kangeroo'd with Ciara for 3 hours, we came back on the Friday afternoon to be told kangerooing had been cancelled due to the suspicion that both had NEC (necrotising enterocolitis-the intestine begins to die due to an inflammation/lack of blood supply). We had been told earlier in the week that both had PDA (patent ductus arteriosus) and that the medication to treat this would begin in the next days- with the NEC this had to becancelled, instead all food had to be stopped and anti.biotics started.
Ciara got over this very quickly- her food was restarted within a couple of days but Enya spent the next week on and off her food as she battled with a bloated tummy and difficulty digesting even the 6 grams a day they were putting down her nasogastric tube.
By the next weekend(29/08) they were both started on the ibu.prufen to close the PDA and then came the next blow- Enya landed up being reintubated and ventilated due to difficulty maintaining her O2 levels (sats). During this time I repeatedly saw her sats dropping below 40%- the lowest I saw them fall was 0%-she had to be manually bagged to open her lungs up and raise the sats! She was also constantly fighting the ventilator and pressing against it so they had to keep changing the settings to find one she would tolerate. The next blow was quick to follow, her PDA was almost closed but they couldn't continue treating it as she developed an infection from her central line. Then she was diagnosed wit BPD (broncho pulmonary dysplasia- this we had been expecting as most micro preemies develop this). To finish it up we were told both girls were thought to be fitting and had been started on L.uminal (phenobarb.) Around this time (beginning of September ) both girls had their first blood transfusion followed, a week later, by a second transfusion for Enya. By 04/09 Ciara's PDA had closed but Enya's was back, larger than ever, and as she was now too old for the medication to close it, she was going to have to be operated on. Thankfully the PDA was not having a large effect on her perfusion (surprisingly due to the size of it) so we could wait until she got bigger-at this stage she weighed about 750g. Yup the beginning of September was really tough!!!
Things began looking up again in the middle of the month when Ciara started getting weaned off her CPAP. She was changed onto CPAP via a mask at night and allowed to spend the day on supplementary O2. At the same time Enya was extubated and although it initially looked very doozy, within a week they started her on the CPAP via a mask with short periods just on extra O2.
By the 25/09 Ciara was no longer on CPAP and Enya joined her on the 02/10 on just supplementary O2. Around this time they also started weaning them both off the L.uminal. We were no longer the problem kids on the unit and were even given to the student nurses to bathe and feed!! Apropro feeding, Ciara drank her first milk from a teat on the 13/09, Enya on the 04/10 although both had been practising on fennel tea lollies during gavage feeding almost from the first feed.
On the 12/10 the girls had their first ride in an ambulance as they were transferred to the local childrens hospital (we were too good for the NICU, our places were needed by triplets that were awaited).
to be continued....
3 Feb 2008
We got to 4am Sunday morning when they landed up doing an emergency cerclage as the lower sac membrane was starting to enter the cervical passage and my cervix was funneling. That was fun, NOT!! Don't recommend the tocolytics though, as I had an extreme case of the shakes on them- the racing heart rate was liveable but I was literally shaking my whole bed!
The next 3 days were spent on tocolytics (got to try 2 because of the extreme reaction to the first). On the Tuesday afternoon I was taken off the meds (only supposed to stay on the second medication for 48 hours) and within 3 hours I was in labour, so first medication restarted and for the first time we got to speak to one of the neonatologists in the hospital. He was good but also believed in giving us the blunt facts: 60% survival rate with a high rate of disability, would need breathing assistance and every day we could hold on would be a bonus.
After this talk we decided to delay the CS until the next morning if possible and see if things didn't settle again. That night I had very heavy bleeding and contractions continued unabated so
the next morning (Wedensday) I was first on the operation table. Unfortunately (or fortunately depending on your viewpoint) I had to be knocked out for the surgery as the spinal block didn't work. In retrospect I'm very glad I wasn't awake and that my husband, Mr Z, wasn't allowed to stay, as later we heard that Enya had been touch and go after delivery.
Ciara was delivered first and did really well- she even managed a cry, but Enya's placenta had been detaching and it looked as though the membranes had also ruptured i.e. no fluid around her and she was covered in congealed blood. They had to pump her stomach to get rid of all the blood she had swallowed. The scary thing was I had been monitored the whole night and there had been no signs that she was in any distress.
I don't remember much of that day except Mr Z coming to show me photos of the girls and to say that Enya was struggling and had been put on NO gas to try open her lungs up as she was not saturating well on 100% oxygen, despite 2x surfactant doses. That did the trick and after 6-8 hours on this treatment they were able to put her back on to normal oxygen and she maintained her sats (she was on high frequency oscilation ventilation at this time).
I saw them for the first time the next day- tiny wrinkled red beings with dark fluff (lanugo) over their bodies and their eyes still sealed shut. Ciara was by this time already on CPAP, Enya was still being ventilated but with a less aggressive mode of ventilation. Love at first sight it was not, I think I was still in shock at what had happened. That being said, we were encouraged to touch them-gently cupping our hands around their heads to encourage bonding. I look at photos of the first few days and can't believe these are the same babes we brought home.
to be continued.....
1 Feb 2008
Introducing my beauties Ciara and Enya.
We'd been TTC for 3 years when it finally worked with injectibles and an IUI (our 3rd attempt). I can still remember the phone call to my doctor's practice where I found out that it was positive and the feeling of utter disbelief. My doctor told me straight off the HCG numbers were very good and the follow up numbers a week later were "climbing like champions".
The next week I was visiting my folks in England when I started to get really bad cramps and spotting, so off to A&E. That's where we were told it was twins.. no, hang on, could be triplets!!! (This was at 6 weeks)
At 7 weeks I landed up at the doctors again due to period like bleeding (heavy period!).This time they saw 2 heartbeats and were able to say definitely "only" twins. I was then told 2 weeks sick leave and if the bleeding stopped I was allowed to go back to work- got to love Germany's medical /social system. My next doctors appointment (8 weeks) I was told there was only one heartbeat and the second sac was just fibrous tissue ie. the embryo had died. Needless to say, tears ensued as I tried to work out what I'd done wrong. 2 weeks later at the next US- Baby 2 was back and I changed doctors.
First thing my new doctor (Dr H.) did was give me a work ban for the rest of the pregnancy (at 12 weeks!)- really got to love Germanys social system- to protect the baby doctors can give the mother a work ban for her pregnancy, she still draws her full wage paid for by the government. He also put me on modified bed rest as I work as a physio in a busy little hospital (lots of lifting!!!!) and had placenta previa and have an incompetent cervix. I guess he thought it was the only way to slow me down. Bed rest=absolute boredom, this is when I discovered blogs in general and IF/Pregnancy blogs in particular.
So fast forward to 24 weeks and 5 days, I suddenly started bleeding again.......to be continued.
got to go the girls are stirring