Sunday 9th October 2011

Hello.

Today Jon and I have got to spend quite a lot of time with Freddie on the children's ward. When we arrived the nurse (a lady with a Russian ish accent called Syka!) told us that Freddie could now have as much milk as he wants! Hurrah! She had already given him a bottle before we arrived so we waited a couple of hours and had a nice cuddle with him during which he was quite awake. When he started to act hungry we gave him his bottle and he had 50ml which is massive for Freddie! 

He seemed to settle so much better today than yesterday because he had a full tummy. They should be taking him off his TPN (his IV nutrition) tonight which also means he should hopefully be able to have his last remaining central line taken out! 

We had a few nervous hours this morning. When the doctors were doing their usual rounds they said he was doing fine but that they needed to do an ECHO (heart scan) on Freddie because of the small narrowing that was still present in his heart!! What....this was the first we had heard of this! As you can imagine we weren't very happy at the prospect of him needing further surgery and were also feeling rather confused. We also heard mention of the blood pressure in his arms being higher than what it is in his legs so we started thinking the worst! 

Anyway, a couple of miserable hours later the doctor came over with the scanning machine and scanned Freddie's heart. We sat there looking at the images of our little baby boy's heart and blood flow as if we had a clue what we were looking for! After the scan the doctor explained that Freddie did have a very small narrowing in another part of his heart but that it was not affecting his heart function and that it would just be monitored when we bring him back to the heart centre clinics. He said that we were still set to be taking him home once he has established feeding! 

We remember the surgeon mentioning that sometimes when significant coarctations like the one Freddie had are corrected the surgery can cause more minor narrowings in other positions. It appears like this is a common occurrence as a family we met who's little boy had the same heart surgery a couple of days before Freddie were told the same thing. 

It sounds like we will be bringing Freddie in to the heart clinic to be checked after the first week of being home and then after the first month and I'm sure regular checks will continue from there. 

If this smaller narrowing does become worse it can be corrected with a much less evasive procedure when Freddie is bigger but hopefully it will not come to that. 

So after a rather stressful morning it still looks like Freddie may be allowed home in a week or so which is fantastic! 

Freddie enjoying a drink with his Dad!!

We better start trying to remember how to fit the baby car seat!! Whoo. 

Samuel quote of yesterday:

In the car on the way back from Matlock: " Mummy, I don't want to leave Matalan!" Classic, not many children have ever said that they didn't want to leave Matalan!