History 101..part four

This is getting really long winded, but then it was a really busy 6 months. So where was I? Hmmm.. October.. getting too good..transfer to the Kinderklinik (Childrens' hospital).

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.