Preemie and Proud

My daughter rode a horse today for the first time, and I can’t deny that the tears streamed down my face. It doesn’t seem like a big deal to most parents, and to be fair, when my eldest daughter had her first lesson, I was smiling and not crying. But for my youngest, there are some milestones that just hit me harder than others.
 For the most part she is a beautiful, intelligent, healthy and happy 5 year old, but on days like this — it is hard to forget just how special she is.

Because the truth of the matter is — she was almost never here. She almost didn’t make it.

I suffered terribly with Hyperemesis during my first pregnancy and despite my doctor assuring me it was ‘unlikely’ to happen again, it seems that the whole “trust me I’m a Doctor” sentence is redundant. The Hyperemesis came back again, and this time with a force greater than the first time.

I can’t count the amount of times I almost passed out in the midwives’ office, or the number of times we would trip to the hospital for a night on a drip and monitoring. I lost weight rapidly, my hair fell out in chunks and all I could think was ‘God, I want this to be over’. There is not a day of my life since that I don’t regret thinking those words.

At 20 weeks or so, I went to the midwife for a normal check up. She was over worked and highly stressed. I could see that. She was on edge and the number of pregnant and irritable women sat out in the waiting room tapping their fingers on their bumps was not helping her stress level.

During my appointment, I got up twice from the bed to throw up. At the end of our very hurried appointment, I left feeling as if she never once lifted her head from the pile of paperwork on her desk. My worries about being “much bigger than normal” at this stage of my pregnancy were shoo-shooed away.

A few weeks later, while being cooed over by friends and being told how ‘enormous’ I was, I felt twinges. I put it down to ‘Braxton Hicks’ at first, but as they got stronger and more frequent I worried. My husband told me not to panic and my friends assured me that if there was an issue, the midwife would have told me about it.

I didn’t realise then, but it was the beginning of labour pains. Whilst walking around the park with my daughter and step son, I went into full blown labour. The contractions were strong, painful and coming quick. My husband rushed me to the nearest hospital and when I walked into the reception the woman on the desk muttered the first question. “How many weeks are you?” When I told her, her eyes shot up from the paperwork.
 “Are you having twins?” I looked at my husband and tried to laugh it off with a “No, but everyone thinks I am!”

The look on her face should have said it all, but I had no idea what was coming. I was rushed into a scan room and told that I was measuring almost double the size I should be at this stage. The ultrasound technician was silent. She tried to smile and reassure me, but the concentration on her face petrified me. She left the room and came back with a consultant, after hushed words and more pointing they left the room together.

The Double Bubble
 
“We call it a double bubble” said the consultant. “If you look at the picture, you can see that the dark space where the stomach should be, there are two dark spots.” I didn’t understand at first, all I could see was what looked like a bowling ball. Essentially, my beautiful baby girl was suffering with a duodenal atresia. Her stomach wasn’t fused to the rest of her organs. Amniotic fluid was being taken in to her stomach, but was not being expelled out the other side which meant that my body was sure that the baby was not taking in the fluid and so in turn was producing more and more each day.

The good news was that my baby was fine. She was growing normally, her measurements and heart rate were fine, but I was not. I was put on medication to stop the contractions and stave off the labour.

I am not the first mum-to-be to go through all of this. Thousands of mothers struggle with issues during pregnancy, but it is only now that I look back and think how utterly unprepared I was for anything going wrong. Despite knowing the affects of hyperemisis, I was naive enough to think this was the only thing that could go wrong.

Over the next week I was visited by countless specialists and surgeons. Bio-chemists tailor made drugs for the infection my midwife had missed. The infection which had gotten so severe it had put me into premature labour. I was told that I would not, under any circumstances, be leaving the hospital and that they would try to keep baby inside me until the very last moment. Any time the contractions started again I was given morphine to stop them. The goal of the game was to keep baby inside long enough for her lungs to develop and for her to be strong enough to survive an operation when she eventually came into the world.

That was when it hit me. I had not even considered that bit. My whole world was turned upside down by all these drugs and trying to stop the labour early that I had totally forgotten that when she eventually arrived she would need to endure at least one, if not multiple, operations to repair her stomach.

There are so many other offshoots to this story, with a million other issues that cropped up along the way, so many that I could probably fill a novel with them. But the main issue came the day that the counsellor came. She sat on my bed with a file and asked me a litany of questions.

How I was feeling? Was I scared? Did I think I would cope?

Was she insane? Of course I was scared. Isn’t any mother when they are told their baby is coming far too early? There was a chance that if my baby was born now she would not survive. Her lungs may not be strong enough, the complications with her stomach could have put stress on her other organs. There was also the issue that currently they were not 100% sure the baby would not have Down’s Syndrome. Something I had never considered. Apparently this was a complication that can occur with Down’s Syndrome children. We would not know until she was born.

Then came the kicker. I was still getting bigger. My body was not coping. If I went into labour now there was a chance I could bleed out before they could get to the baby. There would of course be specialists in the room equipped and ready to deal with this. Then there was the issue of spontaneous labour. If my waters broke, it would be like breaking a dam wall. With the fluid I was holding there was the chance the cord could come down before the baby and cut off the supply before they could get me into theatre. They would, of course, do everything in their power to make sure none of these scenarios would happen, but they had to make me aware.

So I signed the piece of paper that stated I understood the risks ahead of me.

The reality that this pregnancy could end up killing either me, my child or both of us was hitting home.

Writing all this now, 5 years on, and I still tear up thinking about how much my husband had to deal with. I was in hospital for such a long time, and he had to get back to work! His boss had been so incredibly supportive, but we had no idea how long this would last. My eldest daughter went to live with my mother-in-law, and my husband would travel from his job to the hospital each and every night, a 3 and a half hour trip, to see me, then return to an empty house. No wife, no daughter and the silence that would have him wondering if everything was actually going to ‘be okay’.

I was lucky in some respects. I had the amazing power of drugs to keep me numb. Each and every day I focused on getting through the next 24 hours with her still in my belly. I wasn’t counting down the days to her being born, I was chalking up another day of being able to keep her safe inside.

B-Day
 Friday the 13th rolled around. My body was struggling. My lungs couldn’t cope with the extra weight, my back, which was already in a bad state after a childhood car accident, was almost certainly broken and my heart rate fluctuated more than was good to know. Five minutes after I was given my daily slice of toast for breakfast, my surgeon flew into the room and snatched it out of my hands.

I was going into theatre. On Friday the 13th! They were going to get my baby out and I was terrified. The specialists had decided that baby was ‘viable’ and that keeping her in any longer with me still getting bigger by the day was much more dangerous to us both. So I was having my baby. I called my husband and he FLEW down the motorway from work to be with me. Friday the 13th. Bleedin’ Friday the 13th!

The look on my husband’s face that day will never leave me. A mixture of relief that it was nearly over, and fear that we had no idea how the operation would go. Would I bleed out? Would she breath? Would she cry?

He was kitted out in cap and gown, and yet again I was asked if I understood the risks and possible outcomes. An army of specialists lined the walls of the operating theatre as they made the first cut — waiting to react to every outcome. 5 litres of fluid were extracted from my stomach before they could even reach my baby. More than my surgeon had ever seen before.

Then there she was. This tiny baby. I could tell the second my husband saw her for the first time. His eyes were a mixture of pride and fear. I will never forget it.

Then she screamed.

The loudest scream I have ever heard. This tiny little baby emitted the loudest ROAR any of the surgeons had heard in a long time. I had been told I would not be able to see, touch or hold her, that she would be whipped away to have her breathing started etc… Instead she was put on my chest for a moment and Daddy cut the cord.

She was alive and so was I. The first part was over. She was rushed off to NICU and I was taken to recovery.

Over the next few days, my baby astounded the NICU staff. My daughter was a fighter and despite the fact that we were told it would take at least two weeks for her to be strong enough to be operated on, it was a mere 24 hours (almost to the minute) that she was taken for surgery. During the operation they realised that her stomach was actually separated at two points, not just one. She had survived and thrived despite it.

She was a ferocious fighter and each day the specialists would stand by her cot and say “her next milestone is to be able to take 10mls of fluid, but that may take a while.” etc etc. Nope, not my daughter. Almost as if she could hear them — the very next day she would hit the milestone. Her 6 month stay in the NICU was being decreased each day and just a month after her operation she was at home with us laying on the sofa being cuddled by her big sister as if nothing had happened. This tiny little miracle took it all in her stride and surpassed expectations.

I look back now, a few weeks away from her 5th birthday, and realise that she has been doing the same thing ever since. You would never ever imagine she was premature. You would never be able to tell unless you spot the three inch scar that traces across her stomach from her belly button to her right hip.

As she sits astride a horse today, with all the confidence in the world, I can’t even begin to explain the feelings coursing through me. Fear, that she might hurt herself. Confidence that even if she falls she is the one child I am confident that will bounce back up and get straight back on. Pride that five years on she is still here, despite all the doctors warning me that she might not make it. Relief that I never had to know the pain of losing her and gratitude to each and ever single doctor, midwife, surgeon, specialist, bio-chemist, receptionist and NICU nurse that helped us through the most difficult days of our lives.

But out of all of those emotions, the one that over rides them all… Pride. Pure Pride. My beautiful little miracle girl that should never have made it into this world, is sitting on a horse with confidence and poise. She is a force to be reckoned with and I am proud that for whatever reason, I was chosen as the mother that would guide her through that journey.

The one thing that I have learnt over the past few years is that although my daughter’s story is as unique as she is, she is also not unique in her fighting spirit. There is something about fighting to be a part of this world that gives premature babies an extra DNA strand. A superhero power of some sort. They are the strongest warriors, the most resilient and determined of all children. As for the mothers of premature babies, each and every one deserves a medal. Getting through that fear, the pain each day of watching your baby being kept alive inside an incubator and feeling utterly helpless — that is something no mother should ever have to experience, but they do. Every single day.

Nowadays, being premature is not a death sentence. Medical advances have allowed us a second chance at life and these tiny little babies are given the opportunity to survive against all odds. The medical staff that treated me will always hold a special place in my heart and to this day I remember the faces of each of the parents and babies that shared the NICU room with me and my little girl.

My daughter was a preemie and I don’t care how much the mums laugh at me when I cry at the tiny milestones that mean less to them. Her first solid meal into the tummy that didn’t exist, passing ‘gas’ out loud when I remember the days that she screamed in pain as the gas would pass by the scars in her stomach, and sitting on a powerful animal with no fear of being hurt. My daughter was preemie, and I am proud. So I let the tears fall. But now they are tears laced with pride and happiness and not fear and pain.

To all mums and preemie babies — today you should put on matching superhero capes and dance around the room. They made it — and so did you!


Originally published at theglasshousegirls.com on February 24, 2016.

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