I was up with the birds again to phone the NICU and check how Theo had been since Phil left him a few hours earlier; and to express. Phil went over to spend some time with Theo before having to take Jack to school and go to work, so I stayed at Ronald McDonald and helped Jack get ready for school.
It was amazing being able to feed Theo every hour via his NG tube. It made us both feel much more involved, like we had more of a purpose rather than just sitting and staring at him. It definitely helped Phil feel that Theo needed him more. Even Jack was able to help by bringing the milk from the kitchen.
Theo had a really good day that day, his gases were good and he was lovely and settled. One of our friends from Jack’s school came to visit that morning, she had planned a surprise baby shower meal for me only the week before! She came with some lovely gifts and his first blue outfit which looked like it would fit him in about 3 years!! It was lovely to have her visit. We weren’t having many visitors because we never knew how Theo would be and it was all still very early days. Thankfully he was having a good day and I was glad of the company.
I hadn’t had chance to buy anything for him yet as I was planning to do it all on my maternity leave. It would be a while yet before he needed anything though. I was really glad he had his own blanket over his incubator. I didn’t want him to have hospital blankets, I wanted him to have his own blankets and teddies etc, to go with his family picture. He wasn’t just another baby in NICU, he was our baby Theo.
Later that afternoon the discharge Coordinator wanted to see me. We sat in a small room and she explained that when Theo weighed over 1kg, was off the ventilator and over 28 weeks corrected gestation, that we would be transferred to our “local hospital”. At that time he could still be in hospital for months and our “local hospital” was an hour round trip from our house and it didn’t have a Ronald McDonald, so we would have to have been split up.
I was totally devastated. I felt like completely giving up. We never asked for any of this to happen! We just wanted to go home with our baby. We could manage a few days or even weeks but not months. It would definitely affect our ability to cope.
As a family we had discussed many times how we would get through this and the answer was always that we would do it together. We are such a close family. We sit round the dinner table together every night. Phil and I have always gone to bed at the same time every night and we have only spent a few nights apart in our 17 years together. We finally had our miracle baby after all our struggles, our little family was complete. Why did things have to be so complicated and difficult??!!
By the end of the meeting I had gone into survival mode. I knew what we as a family needed to do to get through this. I had gone from feeling hard done to, to thinking that we would do whatever we had to. We would secure a flat to rent in the area and move there, what ever it takes to stay together as a family and be close to Theo. I was told that that would be ‘extreme’ but it is impossible to judge until you have been through that situation. When something is so important to you, you would do anything.
It’s really so difficult to know what anyone would do when their family is thrown into turmoil. Everyone is different, everyone’s lives and circumstances are different. The NICU unit had closed at the closest hospital to our home. If we had been going there then it wouldn’t have been as much of an issue, but there was no way that our family would cope with being so far away from each other for so long.
When Phil and Jack came back we spent time with Theo and then I took Jack back to Ronald McDonald. I was running on empty anyway but because it had been such an emotional afternoon I felt completely drained. I went back over to see Theo later that night until after midnight. I just sat thinking, determined. We would stay together no matter what!!
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