It was the best feeling ever when me (Katie) and Andrew my partner found out we were expecting our first baby due 10/03/2012. It was going to be a girl! PERFECT! just what I was hoping for.
All my appointments and scans confirmed we were going to have a healthy good sized baby.
On 10/03/2012 I got admitted to Burton Queens Hospital to be started off as my waters broken on the Thursday. I got took down to the delivery suite on the 11th, it was such an emotional time for us both and couldn’t believe that in a few hours were was finally going to meet our princess. I had it all planned out in my head, Andrew was going to be the first one to feed her, we were both going to dress her so we laid all her clothes in the cot ready and she was going to be put straight on me for some mummy cuddles, but none of that went to plan 🙁
Whilst in labour the baby’s heart rate kept on dipping, I was told to lie on my side for ages. Every time the doctor came in the room the heart rate went back up, so I was told to get some rest. The midwives were fantastic, really made you feel relaxed and calm. 9 hours later I gave birth to Ellie-Mae weighting 7lb 4oz. Ellie-Mae was put straight on the table opposite me to be checked over, she had a little suction and some oxygen and I heard a little cry, it wasn’t a continuous cry but the midwives were concerned and the room quickly filled with doctors and nurses. Ellie-Mae was taken straight to Neonatal and was ventilated and x-rayed. Daddy could go with her but I couldn’t and when the doctors came back into the room to me,
I knew it wasn’t going to be good news. I was informed that Ellie-Mae had CDH and was being transferred to Leicester Royal Infirmary for an operation and that I could finally see her before she went. They wheeled me in and it felt like my heart had stopped beating. It broke my heart to see my daughter on life support, with wires everywhere and lots of drugs being pumped in to her. My heart was breaking inside but I didn’t want to look weak by crying but I just couldn’t hold it in anymore and I broke down. My little girl didn’t deserve any of this but I knew she was going to be well looked after and she had her daddy by her side as I had to stay at Burton over night. That night Ellie-Mae got settled at Leicester and her Daddy rang to say she was stable and that her operation was booked for the following day.
After some complications Ellie-Mae had her repair on 13/03/2012. They did the repair keyhole and she was the first ever baby to have this kind of operation done at Leicester Hospital.
The next 48 hours were crucial but Ellie-Mae remained stable and 3 days later she was taken off the ventilator and finally we were able to hold our beautiful baby girl! It was the best feeling ever!!! By day 5 we were able to start feeing Ellie-Mae milk through a tube in her nose, she was taking this good and started to gain a little weight. After a few more tests and x-rays the doctors confirmed that Ellie-Mae had 3/4 of her left lung and that the operation was a success. On day 7 she was transferred to the nursery ready to be transferred back to Burton Hospital so they could monitor her feeds.
Day 11 we could finally take Ellie-Mae home and show her off to all our friends and family. We soon got into a routine and Ellie’s little personality was starting to show!
When Ellie-Mae was 7 weeks old and was having her evening bottle she stopped drinking, coughed and started to cry. We just thought she was crying because she had wind, but she wouldn’t stop crying and the cry turned in to a little scream. I called my mum as we didn’t know what was up with her and my mum was on her way down. When my mum turned up the scream stopped and Ellie-Mae went very pale, lifeless and her eyes started rolling back into her head. There wasn’t any time to wait for an ambulance so we all got in the car and rushed her straight down to Burton Hospital. Whilst on the way Ellie-Mae wasn’t responding to me and her breathing was very shallow. We arrived at the hospital and the room filled quickly with doctors from every department, they x-rayed Ellie-Mae and confirmed that her hole had opened up again and that she needs to go to theatre to be put back on the ventilator and made stable. We all just couldn’t believe it and was so pleased that we got to the
hospital just in time! So she was transferred back to Leicester and was booked in to have her operation the next day. This time Ellie-Mae was in the CICU and me and Andrew were given a family room again so we were able to stay by Ellie-Mae’s side anytime day and night.
Ellie-Mae had her repair but this time they cut her open instead of keyhole and 2 days after she was taken off the ventilator. She came round quickly and was soon moved into the children’s ward where we were able to start feeding her milk again. She went from 5mls every 3 hours to 90 mls every 3 hours within 2 days. As Ellie-Mae kept all the milk down and was having lost of rest the nurses were happy for us to take Ellie-Mae home after 9 days in hospital. She was still weak and very pale but after a few weeks rest in her own bed Ellie-Mae was her cheeky, smiley, happy self. She is still on medication to help with stomach acid and we go to both hospitals for regular check ups and tests.
Doctors confirmed that Ellie-Mae’s CDH either wasn’t picked up at the 20 week scan or it happened after as she has a large amount of left lung that has formed and the second time Ellie coughed the hole open. Since her second operation Ellie has had a bad cough and when we got it checked out for the 3rd time they finally confirmed she had a chest infection which cleared up after a weeks worth of antibiotics. She has had test to see if she has reflux but that’s come back clear and I have just got to monitor Ellie whilst weaning her.
Ellie-Mae is now 5 1/2 months old and by looking at her you wouldn’t think she has been through all that she has.
Me and Andrew are very proud of Ellie-Mae and proud of ourselves of how we coped with it all. It is the hardest thing I have ever been through and not knowing much about the condition as we wasn’t aware of CDH UK.
Talking about it hurts and I think I will always blame myself for what happened (that’s only natural) but the not knowing if Ellie-Mae was going to make it, and knowing she was in pain broke my heart, but with the support from the nurses from both Hospitals and support from family and friends really helped and cant thank them enough. Ellie-Mae is our brave, cheeky little princess who is loved dearly and we look forward to a bright, healthy, happy future together as a family and what I learnt is, things might never go to plan but as long as you all have each other and are healthy, that’s all that matters. xxxx