2nd June: So today was an unusual day filled with some good news. Starting of they had told me that they had canceled his scheduled pda operation. Not surprised as this had been cancelled numerous times before. The good news was that they had canceled the operation due to Oliver having a scan and the pda duct was practicly closed. This was amazing news not only for the fact it had shut, but more so that he didn't need to go through another operation, this made us extremely happy. All the weeks of ups and downs and he is, he isn't, had all finally come to an end.
The next step for Oliver was to stay in london to have his stoma reversal. It was agreed for him to stay in london, mainly to do with how he reacted to the trip to London. As you may remember from previous blog posts, he didn't take the trip well.
Also he was scheduled for another eye test just to be sure they didn't miss anything. I hated the eye tests, when it was my turn to be in with him, when he had them,I had to step out. If you have ever seen an eye test, you know what I mean. I hated seeing him being prodded and poked in general, but the eye test for me was horrible, guess eyes just make me squeamish anyways.
Now for the best part, dads first hold.
It was the 4th of June, I went in to visit as usual, walking in and from the day before it was agreed I could hold Oliver today. This would have been the first time I had ever got to hold my son. 10 whole weeks 2.5 months of never holding your baby as you can imagine I was exited. I was also scared, holding such a tiny life, only existing because of his will to live, but mainly because of the wires and tubes keeping him that way. I thought what if I hold him and the breathing tube comes out or I move a wire, pannic started to fill my body. Then came the doubt, I was so scared to hold my own son. Picture yourself scared to hold your own child, but I wanted to so badly so I forced all them thoughts to the back of my mind, today i told myself, i was going to hold my son.
While holding my son, I could feel his warm body laying softly on mine. Doing skin to skin, was so special, his little hand just resting on my chest, feeling his little lungs fill up and just feeling so content. I must have sat there for hours, I didn't want to put him back, this is how it should be, but at home. Looking down at this tiny little soul and holding him so gentle trying to keep so still, was just bliss.
While holding him, the nurse explained a few things and went on to say, he should be having a bowel xray tomorrow and then hopefully the stoma reversal surgery in 2 weeks, depending on the xray results.
knowing the surgery wouldn't be far and he can progress was a joy to hear. The nurse also went on to explain they would be trying Oliver on the nasal ventilation, (belive this to be bubble cpap).
The only slight downside to this day was due to covid, the Ronald McDonald house called me. They explained we couldn't stay there as myself and frances had gone home from Gassiot house and hadn't isolated for 14 days.
This was near impossible for us to do, how could we isolate for 14 days when I still had to come home from London to work, also how could we spend 14 days in London without change of clothes and food and just other things that held us back.
We were on the waiting list until restrictions lifted or we could isolate.
After putting Oliver back into his incubator, I could feel this wave of relief, it was like all the worry and all the stress had just flown away, as if holding him had some kind of magical power. In them moments I was just a dad holding his kid, that was magical.
5th June Lowering his morphine and feeds to 1.5ml
6th June: Oliver was doing well he was on a roll with how well he was doing. The nurses decided to ween him down even further on his morphine. This made the nasal ventilation even more likely to happen.
Oliver had also had his contrast scan on his bowel, the news was good news and everything seemed good. This made the stoma reversal surgery in the next 2 weeks realistic. Then the plan was to wait a few weeks and get him back to Brighton.
Next, Oliver's first sound, but here comes the real problems.
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