The time in hospital seemed to last forever. We started off in a small NICU in the hospital where I had the CS, although small this unit handled all the preemies born under 28 weeks in our region of Germany, so very specialisied. For the majority of our 8 and a half weeks there we were the sickest (and smallest) babies there.
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....