One Year Later

With two busy little girls clambering over Shaelyn's legs as she pens this article, you'd never be able to tell that they spent the first four months of their lives in hospital. Now, on their first birthday, she shares the incredible journey with us.

 

Like many Neonatal tales, ours begins with a bit of surprise. It was at our routine 20 week scan that we learned we were having identical twin girls. I will never forget that moment. As soon as the image on the screen sharpened, I knew what I was looking at. Two heads. 

It was surprise, joy, elation, and fear!

It wasn't long before we realised that this pregnancy and birth was going to be very different from our first all natural birth.

Within the week I was at my first of many Obstetric appointments. Because of the high risk associated with twin pregnancies, we were handed over to the hospital team for fortnightly scans and  clinical visits every other week. All of this was a lot to come to terms with for me. The natural and intervention-free experience was no longer an option. The control was well and truly out of our hands.

Fast forward seven weeks and what seemed like a never-ending series of appointments later. Devastatingly, there was a problem with the girls scan. We were diagnosed with Twin to Twin Transfusion Syndrome (TTTS) stage one, with the possibility of Selective Intra Uterine Growth Restriction (SIUGR). I had done enough reading to know that this often did not end well. If I thought the scans were a bit over the top before, my goodness did they step it up a notch now! Our OB in Palmerston North referred us to Wellington, to see a TTTS expert.

We dropped my 18 month old son off at daycare and off we went on a little road trip. It was a Friday so we were looking forward to the weekend.

At the scan, one of the most wonderful doctors I have ever met had a good look around. I had given up watching the screen after so many weeks of scans and instead watched her face. It wasn't good. After a while, she helped me up and we went into another room for a chat. She explained that the situation was a bit unusual so she would like to admit me until the girls were born. This was extremely upsetting to me. I was looking at weeks without my son and husband and my babies were not safe.

At each turn I just kept trying to convince myself that we were doing what was best for the babies. Every few hours they had to be monitored for 10 consecutive minutes, which was a mission in itself. The midwife on duty, more often than not, had to call in reinforcements to find both babies. On Monday morning we had another scan. Again I watched her face, again it wasn't reassuring, again the chat in the other room.  

We were told that the girls had to be delivered. TTTS, TAPS, SIUGR were all playing a role in our pregnancy. One of the girls was in the early stages of heart failure, the other would not be far behind. 

Everything happened very quickly after that. Steroids were given and monitors attached until delivery. That was one of the longest nights of my life, waiting and watching the numbers on the screen. We discussed baby names to try and distract ourselves from the situation. NICU doctors came to introduce themselves. This meant a lot to me at the time. To see the faces of the people who were going to be saving my girls lives helped a little.

At 27 weeks and six days, they arrived via c-section under general anaesthetic. They were rushed to the NICU. The day my daughters were born was meant to be one of the happiest days of my life. Instead it was one of the worst. The loss of a positive birth experience is one of the hardest things to come to terms with. The happiness and excitement you are meant to feel is replaced by paralysing fear and doubt. The actual moment they came into the world is blank to me and I will never get that back.

I was wheeled in to see my tiny babies a couple of hours later. They were smaller than expected. Matilda 1085 grams and Penelope 880 grams. I couldn't see them well. Tubes and tape covered most of their faces.

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The next few days were a blur. Parents are gently guided through the first few hours in NICU. Things are explained and explained again. The nurses and doctors in Wellington were truly amazing. The only comfort in leaving two pieces of my heart in the NICU at the end of each day is that someone wonderful would be watching over them through the night. I take my hat off to these hard working and wonderful people.

Scans and tests were done early on to assess our babies but none of it sounded reassuring. The girls both had abnormalities in their brain ultrasounds. I made the mistake of looking for more information. I just wanted something definitive to tell me everything was going to be alright. What I found was statistics and they only frightened me more.

We heard the phrase, "..wait and see." many times and while that is all you really can do, it is a hard thing to practise. We slowly started to settle in to NICU life. Cares, cuddles, doctors rounds, weight checks.

Very slowly, things started to improve. Our expectations slowly came into alignment with our situation. We learned to find happiness in their strange little milestones and we began to enjoy the two tiny babies we did have, rather than mourn the moments we had lost.

First nappy change. Long lines out. First cuddles. Feed amounts increased. Weights went up. They had their first baths at 4 weeks old. More of their faces could be seen when CPAP came off and they went on to optiflow. First clothes were worn when they went from Incubator to thermacot. Transfer to Palmerston North. Naso-gastric feeding tubes came out and finally, at 39 weeks, their faces were there. They looked beautiful. Like tiny perfect little newborns (at 3 months old).

There was a definite turning point for us at around 38 weeks gestational age. We were getting so tired of feeling like observers. We wanted to feel more like the parents of these little girls instead of just visitors. It was the most frustrating part, so near to the end and reaching out for a moving target. The weeks of spreading ourselves between hospital and home were taking a toll on our physical and mental health.

At 39.5 weeks gestational age, we were discharged. This was our happiest moment. As I got into the car, I burst into tears as the last 12 weeks came crashing to a finish. The end of that journey was the beginning of the next.

One year later and I have two very busy little girls at my feet. One is chewing on my toe and the other is climbing up my leg. Although the girls are still loosely monitored by the hospital, we try not to dwell on progress percentiles and studies of preemies and their outcomes. Instead we enjoy our two tiny but fierce little girls.  

– Shaelyn.


 

The Neonatal Trust supports families with premature or sick full-term babies as they make their journey through neonatal intensive care, the transition home, and onwards. Learn more about their great work and support them with your 1%!