I woke up on a Saturday morning, 24 weeks pregnant with twins, bleeding but without any pain.  I was flown to Wellington hospital and the following day, Sunday 10th June 2007, our daughters Isabelle and Kate arrived by emergency cesarean section. There was a NICU team in delivery who stabilised the girls before wheeling them off to NICU.  I had never visited the NICU and knew nothing about it; we had not even started antenatal classes.  This was all very unexpected and very much a surprise.

Isabelle weighed only 580g at birth and Kate was 700g.  Both were on a ventilator and we were told it was possible Isabelle would not make it through the night.  For the first few days we did not care about anything except the fact that the girls were still alive and breathing. I remember being shocked when I was in recovery and the nurse asked me if I was planning on expressing, I had no plan, I didn’t even know you could express at 24 weeks.  I was thrilled to find out you can and it became the one concrete thing I could do for my girls at a time when we had to rely on so many strangers to keep our babies alive and take care of them.

Both of our girls had chronic lung disease, jaundice and episodes of sepsis.  Both did time on nitric oxide and had to have lumbar punctures.  Isabelle also had metabolic bone disease which caused a number of fractures as well as a range of renal problems, and sever apnoeas.  Both girls also had to have their PDA’s ligated, Kate on day 18 and Isabelle on day 40.  Prior to Kate’s PDA ligation she was very unwell and we were so grateful that she was having the surgery we only really found out the bare minimum about the procedure; but at the time it was sufficient for us as we just wanted her to get better.  However when it came time for Isabelle to have hers we had been in NICU a little longer, had been through it once with Kate and we had the time to find out more detailed information.  We avoided researching anything about the girls conditions or procedures on the internet after previously experiencing how different and specific every doctor, surgeon, ward and hospital approach and do things.  Instead we gained all our information from the doctors and nurses directly involved with our girls.  The information did not always come from one source or at one time which could be frustrating but, in hindsight, it also made it a little easier to digest and get your head around it.  If we didn’t feel we had enough information we just kept asking, usually turning informally to the doctors or nurses we trusted the most or if that was still not enough I made formal appointments to sit down with the girl’s consultant.

Kate was on oxygen for 99 days and she was discharged on day 109 when she moved into Ronald McDonald House with us.  NICU were fantastic and left her cot made up next to Isabelle’s so that she could sleep in it while I was visiting Izzy.  Isabelle was in NICU for five months and then she was transferred to Starship PICU (Paediatric ICU) in Auckland where she spent another two months before finally being transferred back to Hawke’s Bay and then home.  She remained on oxygen the whole time she was in hospital and for a further eight months once we were at home.  This may seem like a life time but we were just so grateful to be home we didn’t care and it passes so quickly. We still have the oxygen bottle sitting in the corner just in case.  As well as the oxygen Isabelle also had a nasal gastric feeding tube in for the first seven months we were home, through which she had her night feeds with extra additives.  We became very skilled at putting NG tubes in, administering a huge list of medications and managing her oxygen, all skills which were foreign to us just a few months before this journey began.

It was very scary to leave the security of NICU after five months and have to meet and tell your story to a whole new group of doctors and nurses; it was also very frustrating at times.  In the NICU we had built up strong relationships and we had people we trusted completely and who also trusted us as parents and our knowledge of our children.  At each new hospital we were lucky enough to find a few staff who immediately appreciated and respected what we had been through and who consulted and trusted our judgment in regards to our girls continued care.  However there were large numbers of staff who did none of the above, which made some days very trying and emotional for us.  Our approach was simple, we endeavored to have as little to do as possible with the staff who made us feel inferior and unimportant and focused all our questions and energy onto interacting with the staff we respected and trusted.

One of the NICU nurses told me early on that we were the parents, the only constant in our girls lives and care and therefore we needed to feel like we knew what was going on and never to feel uncomfortable about speaking up on our child’s behalf.  I remind myself of this constantly and particularly while we were in hospital.  Early on in NICU you can feel very detached and removed from your child’s life and care, having to wait to be told when to feed and do cares and when you can have a cuddle; I had to wait until day 17 to have my first cuddle with Isabelle and day 32 with Kate.  But as we went on we gained more and more confidence and I often found myself speaking up on behalf of the girls because even though the doctors and nurses do a fantastic and wonderful job your child is not their only focus and priority so things can get overlooked.

When Isabelle was finally discharged we had twice weekly homecare visits, two weekly visits to the Paediatrician and dietitian and three weekly visits by a child development specialist, as well as ongoing eye tests, scans, blood test and x-rays.  We appreciated all of this follow up but I also had no qualms about canceling, postponing or rescheduling appointments if they didn’t fit in with the girl’s routine.  After being at the mercy of the hospital systems for so long it was very satisfying to have some control back and be able to put the needs of the girls first.

The girls have made steady progress since being at home.  We took the advice of NICU staff we trusted and made a real effort during the girls first winter at home.  We were advised to keep the house at a constant temperature and we interrogated anyone who visited and made sure they were bug free.  Visitors all had to wash their hands, visiting children were not allowed to play with the girls toys and we were very particular about where we took the girls and avoided anywhere public.  Our power bill went up dramatically and we had some visitor free weeks while people were sick but we kept the girls out of hospital and free of any winter bugs.  They have only just had their first cold after ten months at home.  I appreciate that it is more difficult to keep the bugs at bay if you have other children, but friends in that position gave it a good go, including putting huge warning signs on their front doors and keeping the storm covers on their buggies zipped up if they were in public.

In regards to the girl’s development we have deliberately not focused on when they have met milestones but simply focused on the girl’s individual progress and keeping it moving forward at whatever rate or order is appropriate for them and the developmental specialist and paediatricians have been very supportive and helpful in this.  Sometimes it is difficult with friend’s children not to compare, but it does not require too much effort to remind ourselves of the challenging start to life that the girls had in comparison.

The last year and a half has been very challenging and stressful at times but it also gave us our precious little girls and there were plenty of other gifts as well.  In hindsight having the girls in NICU and being away from home provided a number of positives.  Being away from home and all the associated responsibilities gave my husband and I some very special quality time together when we were not at the hospital.  It also gave him plenty of special quality time with his daughters as there were no other distractions or demands on his time while he was with us.

We were also met and grew to know and love some wonderful families in the Ronald McDonald Houses and of course the amazing doctors and nurses who we continue to keep in touch with.  We were fortunate enough to have a number of families in RMH with us who not only had babies as premature as ours, but twins also, both older and younger than the girls. This provided a wonderful support system for all of us.  If this had not been the case we would probably have simply relied a little more on the Neonatal Trust and its weekly lunches and support services which are amazing.

While the girls were in hospital I kept a detailed journal which I wrote in after every visit to the hospital.  This proved a very useful exercise in a number of ways.  Firstly it was a way for me to make sense of what was going on daily; having to put something into words really clarifies it for you.  Secondly it proved very useful as a reference as we went along.  Since we have got home it has been interesting and moving to read back and I plan to pass a copy onto each of the girls in time.