28th May: mums first cuddle after 68days !!!

28th May: This was a day filled with mixed emotions, good and bad. 

Mum went in to visit today, I know this as this is when she got to do something she had only dreamed of doing, and I for that matter, but we will get to that part soon.

So as the day goes, a usual visit as planed expecting this to be the day we finaly get the boy sorted, well we was wrong. The scheduled pda oppreation for today was canceled for the hundredth time, tbh I had lost count with how many times it was scheduled and then cancelled.

You guessed it right, another infection ! Insert pic

(I don't even think I need to say how powerful this picture is, it speaks for itself.)

Hearing frances tell me over the phone that it wasn't happening, was out of this world frustrating. 

All we wanted was for this surgery to take place so he could recover and progress. I felt like I was letting my son down, I don't know why I felt like that but I did. Should I have asked more questions, should I have made a stand, tbh I didn't know what to do, and that's why I felt like a failure to him.

To make things worse it was discussed because he kept getting infections, they might possibly have to go back into his bowel. This was to see if there was any abscesses that could be causing reoccurring infections. I just couldn't belive it had taken this many infections and cancelled pda oppreations to come up with this. 

The idea of them having to go into his bowel again scared me beyond belief. They had already been in twice, what if this was the time nothing could be done. Its hardly worth thinking about, but when your alone in the little room by yourself, and frances is visiting him. A whole story of imaginative thoughts go through your mind, your there alone with no one to talk to, covid preventing you from just going and getting a fresh cup of coffie and relaxing in a cafe.

Frances sent me a picture of Oliver, and although unwell, and fighting an infection, she got a pic with his eyes open.

It was also at this time they went through some of his notes, this is when we found he had a grade 1 brain bleed at medway. (As said in previous blogs, thus is mentioned, but this is when we actualy found out.)

With all these negative comments, something did occur that day, that for a split moment took you away from thinking so disastrously.

Frances got to hold Oliver.

Insert pic 

For the first time since he was born, frances was able to give Oliver the cuddle she, and he so desperately needed. As I said in this moment, nothing else mattered. 63 days after he was born finaly he was a baby in her arms 😢. 

I cant explain on her behalf how this made her feel, but how it made me feel was beyond words, but let me try.

I was so happy for her, I didn't want this moment to end, she had that doting look in her eye and when she came back to the room and showed me the pictures she just lit up with pride. 

Let's just take a moment, for fellow parents out there, imagine the only interaction with your child was through a screen. Now imagine waiting nearly 2 months, or just over to finaly be able to actualy hold your child. This was a magical moment and one I don't think she or I will ever forget.

I just couldn't wait for my turn, soon to come.

The next day

29th May: It was a calm day, the regular antibiotics and blood transfusion ect given. I dont write much about these days where nothing happens, but trust me, I lived for these days. No news was good news as they say. insert pic 

 

Skip a few days, and we are on the 1st of June. Oliver was now on 21% oxygen, that's what we breathe. The infection was slowing right down, and again for the millionth time his pda was to be rescheduled. 

Hmmmm we will see.

Added, over the last few days Oliver had two eye test, both come back with no noticable concerns. This was good news, as this is something we worried allot about, and was a concern not just for us but for the doctors aswell, two week checks were in place.

Below is an up to date account of what our son went through in the 8-9 weeks up untill June 2nd, but trust me there is still lots to come. Trigger warnings with this symbol ⚠️ will be placed on the blog description when needed. This is due to some distressing photos and situations that are going to unfold in future posts.

P.S I know that these post may trigger strong emotions, but future posts will be more graphic, and well 😥. 

So far ... 

x1 brain bleed 

X2 lung bleed

X2 perforated bowel

X2 colapsed lungs

X1 stoma surgery

Blood pressure problems

Glucose level problems

Severe water retention

PDA duct surgery to come 

Possibly aortic stenosis surgery 

Eyes test

Hearing test 

Roughly to date 

11 blood transfusions 

3 other blood supplements 

14 platelets transfusion 

This is the first 8-9 weeks of a premature babys life who wasnt supposed to arrive until late july.

Next .....