Isabella’s Story

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On 4th February 2011 I had 2 embryos from donor eggs implanted in a clinic in Spain. After a very worrying 2 weeks it was confirmed that we were pregnant.

 

The pregnancy progressed very smoothly. I had more frequent scans than a regular pregnancy but everything else was classed as normal.

 

I started to feel ‘not right’ on Saturday 2nd July and noticed that my feet and ankles were puffy. I had suffered from headaches the whole pregnancy which had been put down to the extra hormones I had been taking.

 

On 6th July I woke up and was swollen everywhere.  I went to the doctor, who took my blood pressure and did a urine test, then sent me directly to hospital. I was admitted straight away where they carried out many tests.

 

On 9th July my condition took a turn for the worse and they decided they needed to transfer me to a hospital who could look after such a premature baby. The closest hospital which had a bed for me and a cot for my baby was Norwich and Norfolk hospital, at least 70 miles away. It all happened very quickly after that. The transfer was done in an ambulance with blue lights. I didnt realise how serious the situation was and sent my husband home to pack some clothes and follow on later.

 

On arrival at Norwich hospital a team were ready to deliver me there and then with a chaplain on call. Apparently hopes were not high for the survival of my baby. Luckily once I had been scanned and checked over, they decided that I wasn’t poorly enough to deliver.

 

The next 2 weeks were a complete nightmare of waiting for me to get poorly enough so they would deliver baby. It was the worse feeling ever,  as any pregnant woman will tell you, they would do anything for their baby. The emotions are very hard to explain but 2 weeks on the delivery suite teetering on the edge of an eclamptic fit and the possibility of a stroke makes it difficult to always put the baby first.

 

On 20th July the nurses were taking blood every 2 hours and then deciding what action to take when the results came through.

 

Finally on 21st July the consultant came in and told us that today was the day! I had developed Hellp syndrome,  which basically means my organs were shutting down.

 

At 7.39pm on 21st July Isabella Fraser was born by caesarean section weighing 1lb 6oz at 26 weeks and 1 day.

 

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Izzy came out breathing and made a squeak with very good apgar scores of 8 and 9. However because she was so premature they knew she would tire quicklyso ventiliated her in theatre before transfer to the Nicu.

 

I didn’t get to see my baby girl for 18 hours due to me being so poorly. At one point they did wheel my bed tonthe door of the Nicu but the doctors were changing her breathing tube as it was blocked, so we were turned away.

When I finally got wheeled to see her it was very strange. I think because of the medication I wss on, nothing felt real. It certainly didn’t feel like my baby laying there in that incubator. I. All honesty she looked a bit like a skinned rabbit. It was very scary in the Nicu with all of the machines, wires and beeps.

 

3 days later I finally got to touch my baby’s foot. I found it hard not to stroke her but this causes too much stimulation which makes them work harder. The first few weeks are all about resting and conserving energy to grow.

 

The staff were very encouraging for us as parents to get involved in baby’s cares. Very early on you leatn how to wash them and do their cares. I first changed her nappy when she was a week old. It was the most terrifying thing I have ever done. Her legs felt as though they might just pop off in my hands when I lifted them up. Mind you, like everything in this whole journey it all got easier after the first time.

 

 

 

12.08.11

 

 

On 30th July Izzy was started on my expressed milk and was allowed 1ml. I had been expressing milk since she had been born. I found it very hard and never got much milk. I tried everything,  including having a photo of her next to me and smelling one of her blankets. I think my body was struggling to realise I had actually had a baby. I managed to express for 5 weeks before it completely dried up.

 

When Izzy was 10 days old they took her off of the ventilator and put her onto CPAP which was a really good step forward. And finally on 4th August, when she was 14 days old, I got my first cuddle. We had a kangaroo cuddle, which is supposed to keep them calm and help them saturate higher. Izzy had her own ideas of this, and as we came to realise many other things too! She hated being upright,  squashed against me and proceeded to de-saturate. I can’t say the first cuddle was everything I was imagining it would be. Instead it was steessful and scary.

 

The next day and a different nurse. We decided to try swaddling her and holding her cradled against me. She loved this and was out of the incubator for an hour.

 

On 6th August we got our first look at our baby with no tubes on her face and no hat on. I know it sounds strange but I was fascinated how thin her ears were. It was the first time we had seen them. It was only a fleeting look whilst the nurses gave her a good wash and changed her tubes.

 

At 21 days old Izzy had her first cuddle with her daddy. He held her in a kangaroo cuddle as the nurses kept stressing how important this was but Izzy could only tolerate a very short time like this.

 

The 12th August saw another big step forward by being taken off CPAP and being put onto Vapotherm. This meant she was much more comfortable as now she only had nasal canulas in.

 

 

During our time in Norwich Nicu we had a few ups and downs. She had suspected NEC, which is a bowel condition which can be fatal, however it turned out to be a severe reaction to the formula. There were a few infection scares which meant some not very nice tests, including a lumbar puncture. You soon learn that in Nicu for every up there is usually a down to follow quite quickly. Izzy however fought strongly throughout so we had to xo the same.

 

During the whole time at Norwich Nicu we were focused on gettimv transferred back to Lister Nicu, our local hospital. It was hard being so far away from home and we both felt it would be slightly easier being closer to family and friends. We had been given a flat to stay in whilst in Norwich but nothing beats your own bed.

 

We had been told that they wouldn’t transfer Izzy until she weighed 1kg. It seemed to take forever and then when the end was in sight, Lister Nicu was closed so they could move to their new unit. After 7 long weeks the move finally went ahead and we were headed back to Hertfordshire.

 

Izzy did really well at Lister Nicu. It was no time at all before she had her first bottle, whoch she took to really well. It all took patience but then everything with a premature baby does. She had 1 bottle a day for a while then 2, then every other feed.

 

I think once we got to Lister I finally began to relax a little and start to realise that I could enjoy the fact that I’d had a baby.  I began to feel that we were even lucky. Izzy passed every eye test and hearing test with flying colours. Being so premature these were the 2 things that could have been seriously affected.

 

Within 3 weeks Izzy was moved from an incubator into an open cot. This was an amazing step forward as I could pick her up anytime I wanted for a cuddle. This wasn’t possible when she was in an incubator as it was a 2 person job. I think out of everything this was the turning point for me to really start believing that things would be ok.

 

Everyone had been telling me that when the doctors decide you can take the baby home, it all happens really quickly and people always say they aren’t ready. That is exactly what happened and on 13th October, 13 days before her due date, we were headed home. She came home on oxygen so we had to organise the home oxygen delivery and make sure everything was ready. We were followed home by the outreach worker to insure everything was in place at home. It was scary being home with the beeps of the sats monitor. Not quite the homecoming you imagine when you have a baby! I don’t think anyone got any sleep the first night.

 

First whole day at home….reflux struck. Izzy de-sattedto 9%, she stopped breathing and went grey. Back to hospital we went. It felt strange as once you leave Nicu there is no going back. Once readmitted to hospital,  we were headed for the children’s ward, which although was very nice, was a completely different environment to what we were used to. No one knew Izzy or her problems like they did in the Nicu.

 

 

 

 

I think I kidded myself a bit that when we got home things would start to get easier. Because she came home on oxygen, we were advised not to take her out to baby groups, clubs etc due to infections. Infact everywhere we went I would put the rain cover over the buggy or carseat so no one would even breathe on her. Izzy decided that by December she didn’t need the oxygen anymore. Bugs were still a big issue for us though. I practically hibernated for about 6 months to get through the first winter. Other than severe reflux, with the accompanying blue episodes, she sailed through bug free.

 

Izzy’s development has been watched very closely as she was expected to suffer somw delay. She was late sitting up, late standing and late walking compared to her friends, but at 2 years old, other than being small there is no difference. She has had a struggle with food which is still ongoing to a certain extend but nowhere near as bad as it was. She is a happy, very chatty, contented child who from an onlooker is no different from her friends. She still has lots of medicines for her reflux. It is controlled until she starts teething or is poorly. When it is bad it still causes her to stop breathing and go blue. It’s suprising what becomes normal when you have a premature baby.

 

So 2 years on…..some days it feels like the whole thing happened to someone else, other days it feels like yesterday. I’m not sure that anyone can truly understand how I feel if they haven’t been through at least some of our journey. I listen to her sleeping on the monitor and if she makes a funny noise, I’m packing the hospital bag in my head. I’m hoping this will ease in time. I try not to be protective of her and encourage everyone else to treat hef normally. My family would package her in cotton wool if they could but thankfully she is such a character that this would be completely impossible. She amazes me every day in everything she does especially how hard she fought to be here.

 

 

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