Freddie wanted us to show this picture of Daddy's rosette (chest) and card (top right). Daddy even got a chocolate lolly!
You can also see where Freddie has been living for the past month and can see him with his blue hat on, shown at the end of this post.
11am: On arrival, after seeing another crash on the M20, the staff were happy to see Daddy for obvious reasons. 1. Fathers Day 2. 1kg cake.
Freddie is off the morphine after 28 days. He has also been given a dose of caffeine which we all know is a stimulant, but in this case, it is used in preemie babies in preparation for MOVING ONTO CPAP! Continuous Positive Airway Pressure is another way to assist Freddie to breathe and travels through his nostrils. No more huge pipe down his mouth.
He is still on 5mls of milk per hour and weighs 1055 grams which is a loss of 25g.
11.45am: Daddy has just received his 2nd cuddle for Fathers Day and Freddie was very well behaved. This was also timed before the strategic move to CPAP. We then left for lunch in the parents room.
12pm: the doctor came to find us and provide the latest information on Freddie.
The open duct, between the heart and lungs is still open. It is not as bad and not causing Freddie any significant problems and will be monitored based on how he takes to CPAP. The duct has reduced, but it is still there.
Freddie will most likely be up & down now and will hopefully:
- take to normal feeds, without morphine and the goody bag nutrients; these have also irritated his liver, so just milk would be a better solution.
- and may take to CPAP.
- remove IV line in his leg as it's been there for 2.5wks.
The doctor said to not be too disappointed if he only takes to one and not the other and if he goes back onto the ventilator, this would be entirely normal.
Having milk 6mls per hour - which is normal for his age/size - would also be a success. So today is a landmark in many respects and all we can do, is leave it up to Freddie. There is nothing too serious at this stage.
2pm: I have just sat comfort holding Freddie for 20 minutes whilst Mummy expresses. Both my hands cover his tiny body from his feet to his chin. He is also wrapped up so that he cannot do his favourite hobby, wriggle! His heart rate has been up at 180-190 so after a long cuddle, this managed to drop down to 160. It may be high due to the caffeine stimulant and the CPAP change. He was around 140-150 before. He is still pinky-red in colour which is good. He did not like the tubes down his nostrils, so now lies with a gas-mask like tube over his nose with piping leading over the top of his head, fastened to his new hat.
Whilst I have been comfort cuddling Freddie, Mummy has been out of the ward, expressing. I have witnessed a new baby arrive to NICU from the Delivery Ward. The staff are incredible how they deal with this so calmly and communicate decisions, measurements and diagnosis without displaying too much stress. They are clearly trying to make this baby stable - I am not sure what the problem is yet, as you normally overhear the problem - but with each passing minute, another machine or nurse arrives on the scene. It looks serious and I look back at Freddie under my huge, huge hands and I am just glad he is here today and doing well.
The increasing alarms and quiet-underlying stress - so well hidden - is getting to me somewhat, so as Mummy returns, we pay what little respect we can to the newborn baby and dedicated staff, by leaving the ward for a walk and a drink.
It has now been 45 minutes since we left and I pray we return to a comfortable son and a new baby stable in anticipation for their parents arrival. What a lovely treat for Fathers Day, a new child!
3pm: Just returned and to give you a picture, our NICU room is divided up into two areas. I'm not sure what each side means, probably based on 'level of care' but we have seen the smaller more critical babies on our side of the room. The room is probably 100sqft.
On the other side, the white-curtained trolley is back, not for a Mum to breast-feed but for an operation on the newborn mentioned above. Fingers crossed!
On arrival Freddie had just had his blood-gas taken - this is the heel-pricking procedure - and we are waiting to hear the results...
Five minutes later, quite simply, the doctor is impressed so I think this means he has handled the change well. Early days...
His feeds, each hour, come around very quickly and its amazing to see him have 6mls of milk every hour. It wasn't very long ago he was on 0.5! Do you know what this quantity looks like? Measure it and go see...
Oh, the nurses have really enjoyed the 1kg cake and a lady-vicar has just popped in to chat and see how we are all doing. Mum, she loves your Psalm 139 below:
and apparently I am the:
Having moved Freddie off the ventilator, they have changed his hat and we get to keep it. I now can fit four fingers into it; it used to be just three!
4pm: We are staying nearby tonight and just as we left, the same doctor - who has been busy on the newborn operation - just grabbed us and said: Freddie's oxygen support is high at 70% (normally 30-40) so do not be surprised if he is taken off CPAP.
Just as I was being confident, I have had to cull my high emotions and calm down. This is another typical high and low day.
I will post again tonight when we return to Freddie at 6-7pm for his care. I really hope we still see the CPAP ventilator, but should just be grateful he is tolerating his milk and today.....I am a father and what a wonderful blessing this is.
More to follow.
- follow Freddie on Twitter at #FreddieWM or my wife @JenniMcGill or you can even follow the thoughts and world of me! @rossmcgill, @TeacherToolkit or @DodgyEye.
Location: William Harvey Hospital