MY NICU JOURNEY
Well my NICU journey stared two weeks after my husband Daniel and I arrived back from our final “’hurrah” 5 week holiday in America.
When we found out we were expecting we were shocked and excited all at the same time. We had only, 3 months prior, decided to go off all birth control and both said “see what happens” needless to say we didn’t think it would take such a short time. Then at the 8 week scan, we found out we were expecting twins!! Oh My God, where the first words to come out of my mouth, the second was something I shall not repeat! Poor Dan just sank in the chair and the look on his face was priceless.
As you do, we attended our antenatal appointments, scans completed, bloods done etc. and everything was so far a “perfect” twin pregnancy, apart from a bad case of morning sickness.
We continued with our plan to travel to America, we were arriving home right on 24 weeks so with Dr Approval off we went. I have to say it was one of the best times of my life! Little did we know on our journey home that our whole world was about to be turned upside down.
We attended our 25 week appointment with our specialist, all was well, we were given a referral for our scan as per normal, being that we were carrying twins, we knew that these scans where now going to be done fortnightly and weekly if necessary but all was still well.
As I work in a medical centre where we were having the scans done I have direct access to see my babies. So as per normal, I checked out my beautiful baby boys and had a look at the report. Possible Twin to Twin Transfusion Syndrome it read, my heart stopped. I had never heard of such a thing, so the first thing I did was see my GP, she assessed the report and advised me to contact the specialist to see what he would recommend. After a conversation with the receptionist, I was advised “’all would be fine, it’s very rare, and I would have to wait for another week for the next scan but please be sure that it is probably nothing”’. After looking at good old DR GOOGLE and trying to figure out what TTTS actually was, it was advised, being that I was FREAKING OUT, by my wonderful GP that I should go home and rest for the rest of the week, until the next scan. Rest never came!
I was sitting on the lounge, after just having dinner with Daniel on the Friday night and started to feel what I would describe as bad period pain, we contacted the Private Hospital to advise them, they said you’re probably having Braxton hicks but because your carrying twins its best advised you come in. So that’s what we did, mind you being that I was only 26 weeks we had no bag packed, and were just throwing anything and everything into a bag thinking we would only be overnight at the most.
After trying at the private to stop the so called Braxton hicks, with no success, I was then transferred to Wollongong, more tests, more bloods and more internals; they decided to transfer me to Royal Women’s Randwick as a precaution.
I cannot tell you how terrified I was feeling, along with pain and the anxiety of thinking they can’t come yet, I’m only half way there!
After a very uncomfortable journey by ambulance, I was taken to the delivery suite and hooked up to all kinds of machines I had never seen before, more cannulas added, more pain relief and a never ending train of nurses and doctors.
Being our first pregnancy we had no idea what to expect in a delivery suite for a normal birth let alone if something was going wrong!
A scan was completed which confirmed the TTTS; in basic terms one of our twins was receiving more fluid then the other. Our smallest twin was in only 4cm of amniotic fluid and the larger in 15cm. After a few more days of back and forward up to antenatal and down to delivery, with constant monitoring of the babies heart rates every hour, it was decided that we would try to reduce the fluid by draining it directing out of me! I know right, I couldn’t believe that was even possible. The procedure basically consisted of a very large needle into my tummy and watching the fluid run out of a hose into a plastic jug, 4 litres later the procedure was over, it was always possible that by doing the procedure, it would in turn bring on labour. Our larger twin’s heart rate dropped and we were taken again down to the delivery suite for what felt like the hundredth time, as precaution.
What I can only describe as labour pains continued for the next 24hours!
After another day of waiting we were sent for another scan to see how the babies were going, only to find that the fluid had started to build up again.
It was decided at 27weeks with two hours’ notice we were about to meet our twin boys after an emergency caesarean!
To be honest the next few days are such a blur, the drugs and pain from surgery made everything seem so surreal. We never made it to see the NICU before they came so being wheeled into Level 3 to see my baby boys in incubators with breathing assistance, tubes and wires is an image that will be forever burned in my memory. They looked so helpless in their little (what we now know as nests) with foreign objects all around, and not being able to touch my babies for the first time seeing them, kills me to this day!
When I could finally move around, or found a wheelchair, I was straight down to see my babies again, looking through the portholes at your tiny baby is such a scary and amazing feeling. You only really just got used to the idea of being pregnant and now they are in front of you, so tiny and fragile, and red? This is when the reality of what was happening around me really kicked in.
When the fog of the pain relief cleared, I could really start to understand what was happening around me, the UV lights helping my babies with their jaundice, the abundance of cannulas, PICC lines, heart monitors, Ventilators, CPAP and all the Doctors and nurses. It was truly a sight that I am still to come to terms with.
With premmie babies, we have learnt that all babies have a different journey. Some spend very little time in the NICU, some have very hard journeys and some unfortunately don’t come home with their mummy and daddies. This became my reality every day and the reality, for what I started to notice, a lot of strangers around me.
Our larger baby Logan Jay Perkins was born 1000gr at 3:08pm on the 8th November 2013, having to be ventilated for about a week, and going on to CPAP shortly after. Our smaller baby Jordi Daniel Perkins was born at 850gr at 3:09pm on the 8th November 2013, also having to be ventilated for some time longer.
Having to learn a lot of dos and don’ts for the first few weeks, mainly feeling more don’ts then dos Do not pat your baby, Do not to stroke you baby, Do not change your baby unless you have someone with you, always wash your hands, and although these all make so much sense, when you have just bought your babies into this world and you have a stranger telling you what you can and can’t do, makes the world of NICU even harder!
Then having to express every 3 hours for your babies is thrown into the mix. The “milking room” I used to refer to it as, was actually a room where I meet some of the bravest and strongest women I have ever met. That room could be full of laughter one minute and then tears the next, but it was like bit of therapy in the middle of all the craziness. Your time to vent and let go, so you could get through the next few hours of that day.
Our journey continued through the NICU for some time, our boys were doing really well and we were counting our lucky stars, they were putting on weight, progressing with their respiratory systems etc. and you actually start to get into a routine. You know the times of cares, when you’re going to be doing kangaroo care, the mls your baby is finally having and you start to get to know the nurse’s that are looking after your babies, the doctors and specialists. They all start to become your “little NICU family”.
Logan was finally moved into Level 2 which was an amazingly happy feeling mixed with sadness as Jordi was still in level 3, although doing well we always knew he would take a little longer.
We continued on our routine everyday, Christmas came and went. I would never want a family to spend their Christmas in a NICU but the nurses and dr’s go out of their way to make sure it was just like a little Christmas all on its own. We had dads dressed as stantas, little presents for every baby, and the night staff had made little cards with our babies foot prints and photos. To say I cried a little that day would be an understatement.
The next few weeks went past pretty routinely, until our nightmare struck! Jordi had always had problems with his tummy, we would get to ‘’full feeds’’ then his tummy would blow up like a balloon and we would have to stop and start again once it went down. As a premmie baby isn’t really meant to be digesting food we just took this as something that happened and just went with the flow.
This day wasn’t the norm. His breathing was really bad, his CPAP requirement went up and he eventually had to be re incubated. Our lived were turned upside down again. Jordi ended up with what we can only assume as a very bad virus, which also combined with suspected NEC, made him really sick. Daniel also ended up very sick in hospital on the same day at home, which made everything feel like the world was crashing down on me. He was moved to the isolation room for one on one care and after a few really close calls and a few very very long weeks with constant x-rays twice a day, morphine, strong antibiotics and time, lots and lots of time, Jordi was finally on the mend. Although weak from not having food for over a month we could finally start feeding him a bottle.
Not long after Jordi recovered from his illness we could take Logan home, another feeling of complete happiness and sadness, having to leave one baby in the NICU and take another home.
A few more weeks went past and Jordi had his 100th Birthday in level 3, not long after he was doing so well he finally came off all breathing support, spending only 1 day in level 2 and 2 days in level 1 then we finally took both our babies home!
Our total days spent in the NICU were 110, most of those in level 3. When I look back now it went by so quickly, but living it day to day was the hardest 110days of my life.
Our babies are doing very well for ‘’premmie babies’’. We have had no issues so far at all and they are growing healthy, strong and very vocal every day. Jordi is still a little smaller but I thank whoever was watching over him that he is at home with his brother and keeping us on our toes.
The world of NICU is an experience in its own and these little babies are truly miracles. My NICU journey has changed me in so many ways. I have met so many wonderful people and it has opened my eyes to be more patient, appreciative and believe that anything can truly happen.
Always remember you’re not alone and if you look around, the strangers will become your support, a shoulder to cry on and the only people who truly understand what you are going through!
You will make it past those doors and your life’s journeys with your little one will truly begin.
Jordi Daniel Perkins Logan Jay Perkins
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The Perkins Twins