Lisa's reflective account of Day 123....

June 8, 2018

 

 

I couldn’t believe this day had actually arrived! I had never once in all of our 123 days set a day or date in my head for going home. I took everyday as it came and dealt with them all one at a time. It was much more manageable that way. I didn’t want to have a going home day in my head and be disappointed if we had to stay in hospital.

I had definitely reached the point of exhaustion, I felt like I could sleep for a week. The 10 days we had been at North Manchester I had stayed with Theo the whole time. He had bottle feeds every 3 hours and I had to express in between so I really hadn’t slept at all especially as his reflux was quite bad and he needed his clothes and bed sheets changing after most feeds. I tried to pinch an hour here and there when Phil came in the day but that was really all the sleep I’d had.

The thing that was getting me through was the thought of going home as a family, all together at last! It had been such a long and difficult 123 days but we had made it! We had to wait for the Drs ward round for them to officially discharge us, but I knew that today was the day.

I had not spent one single day in my pyjamas since Theo was born because I had been with him all the time and I’m not one to walk around anywhere public in my pyjamas. I could not wait to go home, lock the front door and spend the whole weekend in my pyjamas, lounging on our new sofa and spending time just us, without anyone else!

The Drs came round and we were good to go. Phil had brought Theo’s portable oxygen so we put his new coat on, hooked him up to his 02 and went out to the car which Phil had brought right to the door.
It was really strange walking out of the hospital with him. So amazing though, Phil, Jack and I were so excited!

I had only been out of the hospital a handful of times in 123 days, when I was admitted in June it was summer and very warm. I remember walking out of the hospital and being taken aback that it was autumn and the leaves were brown and falling off the trees. I had literally missed the last 4 months on Earth, anything could have happened in the world and I had no idea!

Phil had done such an amazing job at home, I hadn’t chosen anything in our newly renovated home but I didn’t care. I loved everything about it, it was home and I certainly realised that home is very precious, especially the family within it. I was so grateful to him for everything he had done for us. He wanted a new fresh start for our family, which is just so kind and thoughtful.

The neonatal outreach nurse came that afternoon to check we were ok. I felt so much more comfortable at home because I could give Theo everything when he needed it and didn’t have to wait for the nurses to get his medication etc. He had come home on 12 different medications, special premature baby milk and on oxygen. He had lots of appointments planned with various consultants but I didn’t care. We were home together and that’s all that mattered.

Being in hospital for so long, especially the early days in intensive care we knew exactly how lucky we were to have brought our baby home. We met families on our journey that were not as fortunate and we will keep them in our thoughts and hearts always.

It has been such a difficult journey for us as a family, Theo’s strength and determination is what has helped us get through each day. We will always be grateful to St Marys NICU and Ronald McDonald House for everything they have done for us. We will continue to fundraise for them to help other families like ours. We have always given to charity, never actually needed to rely on it until Theo came along!

Phil has done an amazing job of publishing his diary everyday for the past 123 days. It has been so difficult for him at times. We have raised over £4000 so far towards our £10000 target.

Thanks so much to everyone that has supported our journey, it is so very much appreciated. We will post updates of Theo leading up to and beyond his 1st birthday. If our journey helps even one person then it has all been worthwhile.

Lots of love,

Lisa xx 

 

 

 

#Theosnicujourney 

#RonaldMcDonaldManchester 

#StMarysNICUManchester 

 

 

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