It has been a massively manic few days. With bubby feeding every hour on Sunday, and managing to calm him down a bit and get more regular 3 hour feeds established on Monday/Tuesday.
My husband went home on Sunday as he needed to pick up some bits for us and baby. It was the first time I was left by myself with the baby, and I just felt really overwhelmed. Probably just the hormones, but I couldn’t help crying. A lovely lady in the bay next to me overheard me crying and came in to check I was ok. She was so sweet, offered her sister to go and get some bits for me if needed. It wasn’t necessary but knowing there are lovely people around really helped.
On Tuesday, after asking the Dr on the ward several times about the GOSH reviews we needed it seemed like he suddenly pulled his finger out and got everything done.
I needed to get downstairs in the next 30 mins for a kidney scan, so I finished up feeding him and ran. The dr told me to just carry him in my arms, and that although it was raining I would have to take him outside and round the building. I thought this was mad, and double checked are you sure? But did what I was told and got going as only had 20 mins to get there. As I was walking out of the ward (through one of the doors) a midwife stopped me to ask if I was going home, and I said no I’ve been told by the Dr I have to carry the baby downstairs. They said no you have to have him in a cot and be escorted you can’t just walk! I knew it!!! Anyway we managed to get there and he had his kidneys all checked.
The kidneys are perfect! You apparently wouldn’t even know.
So now to wait for a headscan, there is only one person in the NICU ward able to do this so we needed to wait for them to come up to see us. Also waiting for the physio appointment.
If we hadn’t heard anything by 5pm they will have all gone home, so won’t be discharged until tomorrow.
At about 4pm the physio came round and did all of his checks. Amazing news! He is acting at more of a L5/S1, so four or five levels lower than he is. He also has reflexes in his feet!!!! Could not have asked for a better result.
Given up that we were going home, I was in the process of convincing my husband to go home so he could drive up to get me the next day. When the Dr came round and asked us to go with him downstairs for a headscan.
The consultant downstairs was lovely, she did the scan and said everything looked great. She even did the measurements they wouldn’t normally do so that we could compare it to the results we were seeing throughout the ultra sounds.Turns out his ventricles have reduced even more!!! We are now down to 8mm and 6mm, so well within the normal range.
The consultant wants us to have another jaundice check. But I genuinely couldn’t be happier. What a result! He is smashing expectations and I know the sugery has made a difference. I knew he could feel his feet when we were stroking them!
They did a jaundice test which came back fine. Then told me I could be discharged today if I wanted, or tomorrow morning first thing.
We decided that it would be better tomorrow as my husband would have to go and get the car seat/car which is an hour away on train and about 3 hours back in to drive. Then my husband decided he couldn’t wait anymore so went to Argos to pick up a cheap car seat just so we could be discharged.
We were finally out of there by 8.30 and getting the train from Euston Square.
I hadn’t told my family but we decided we would drop in to see my mum and dad so my dad could meet him as a surprise.
There were tears, squeals of joy and lots of cuddles. I was finally home and it felt amazing. we decided we would leave the twins at my mums until the next day as it was now almost 10pm and we didn’t want to disturb them.
Now for my first night back in my bed. I am so pleased to all be home and safe!
Spina Bifida Baby 