Grace’s Story.

I fell pregnant easily and quickly, for which I am very grateful. From that point everything progressed as expected. Booking in appointment, midwife visits, scans…sailing along in blissful naivety as to what was to come.
Prematurity had never crossed my mind and I didn’t know anyone personally who had been affected by it. So when I started bleeding heavily at 29+6 weeks pregnant I had no idea what was happening or what journey we were about to embark on.

At 11.00pm on 25th July 2016 my husband drove me to hospital. I was examined and told that my waters had broken but that baby was okay. I was told that the aim was to try to get to 34 weeks before they would deliver our baby. I was in shock and couldn’t believe how quickly things had changed. My easy pregnancy had just been so cruelly turned on its head. I was admitted to the ward and my husband sent home. Overnight the situation changed again. More heavy bleeding, vomiting and stomach pains. The midwife decided to do a trace on the foetal heart monitor. When she returned to examine the trace, she took one look at it and said she would go and get the doctor. I knew that something must be wrong with the baby. Panic set in.

The doctor arrived, looked at the trace, turned to me and said;
“Call your husband and tell him to come in, we have to get your baby out now.”
Honestly, from this point the rest is a blur. I was wheeled out to be prepped for theatre. I remember seeing my husband, signing forms and then being put to sleep. Grace was born at 06.57am on 26th July 2016. I was exactly 30 weeks pregnant.
Hours later I woke up in recovery with my husband by my side. I looked desperately at him and asked:
“What have we had?”
“A little girl”, he replies. “But she might not survive.”
Not the joyful moment I had been promised from all that books, websites and baby blogs I had read.

I felt cheated.
Cheated out of 10 weeks of my pregnancy.
Cheated out of a real birth.
Cheated out of being present at my baby’s birth.
Cheated out of holding my baby to my chest when she was born like you see in films.
Cheated out of hearing my baby cry.
Cheated out of having a healthy, full term baby.

All the things that I had taken for granted of what was supposed to happen.
My husband filled in the preceding hours for me. When they opened me up they found that my placenta had completely detached, meaning that my daughter had not been getting oxygen for we don’t know how long. I was internally hemorrhaging and doctors were unable to stop the bleeding for quite a long time. Someone came out of theatre to prepare my husband for the worst – that his wife and daughter might not make it.

I was told I had undiagnosed pre-eclampsia which had caused a placental abruption because it had been left untreated. Pre-eclampsia is a serious condition that affects up to 6% of pregnancies and I don’t think there is enough information made readily available to pregnant women in this country. My midwife mentioned it briefly at one of my appointments but I was told it was rare and I never once thought that it would be something I need to worry about.

Grace was not breathing and required extensive resuscitation to bring her back. After which she was incubated and rushed to the Neonatal Intensive Care Unit (NICU). It would be almost 11 hours before I could meet her. And a further 3 days before I could hold her.

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I remember lying there in recovery still not grasping the gravity of what had just happened. I was told that my baby would need to be in hospital until her due date and I remember feeling surprised that I wouldn’t be taking her home soon. When I was finally able to meet her, wheeled down in my hospital bed into the new world of the NICU, I saw her ventilated and covered in wires and tubes. So unbelievably tiny, 2lbs 8oz, I couldn’t believe that this was my baby. She looked fragile and so very poorly. I felt I had failed her. Why couldn’t she still be tucked away, safe inside my tummy? Instead she was lying in an incubator fighting for her life, being poked and prodded with needles. Struggling in a world that she shouldn’t be in yet. My body had let us both down and I struggled to come to terms with our new reality.

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A dark cloud descended. All my hopes, dreams and expectations had come crashing down and in their place came grief, worry and guilt. I grieved for what should have been. I worried about the unknown. And I struggled with the enormous guilt that because of me my baby was suffering. Grace spent almost 11 weeks in hospital. 75 long days of sitting by her incubator consumed with anxiety about her future. The early days were dark and are difficult for me to recall. I shrank into myself as we received bad news after bad news.

On Day 2 we were told that Grace’s brain scan showed significant bleeding. We were taken to a room for grieving parents and given devastating news. The word heartbroken doesn’t adequately describe the crushing feeling of being told that your baby might have brain damage. My world came crashing down and I can’t begin to accurately describe how I felt. The dreams that any parent has for their child as you are going through pregnancy were shattered for us. The vision you have of your baby doing the most basic things; smiling, walking, talking, suddenly were stolen away from us. I now didn’t know if my baby would be able to do anything and in my mind I was facing life with a disabled child. In addition to the brain bleed, Grace has a long list of diagnoses including Chronic Lung Disease. She had numerous blood transfusions, X-rays, ECG’s, daily blood tests, head scans to name but a few.

The NICU is a rollercoaster of heightened emotions. You survive the daily battles because you have no choice and it’s only with hindsight you question how you managed to get through it. Grace was discharged from hospital on 9th October 2016, on oxygen support and a feeding (NG) tube. I know that we were one of the lucky ones. A lot of babies do not survive their premature birth and daily I am thankful that Grace survived. She truly is my miracle baby. We weaned off the oxygen within a month of being discharged from the hospital but the NG tube was much harder to get rid of.

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To say the first year was difficult would be an understatement. The prematurity journey does not end at discharge and we had almost daily appointments and follow-up. I fed Grace through a tube until she was one. Since August this year she has been eating orally which has been life changing for us and her development has come on in leaps and bounds.

Grace is now almost 16 months old and doing fantastically. She is doing things that in those dark, early days I couldn’t possibly have imagined. She is a happy, giggly, active little girl and I could burst with love and pride for her.

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We still don’t know how the brain bleed might affect her in the future, but what we do know is that she will continue to surprise and amaze us.

Katie & James

XOXO

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