Alfie Jake was born on 17th May after an emergency c-section.
That single sentence makes it sound like a breeze....however Sarah underwent the section after going through over twenty hours of labour, things were going well for the first five hours but then someone had other ideas about turning up! What you thought I was going to let Sarah have all the fun with the blog??
Our new arrival!
Prior to hospital visit......problem...what problems???
In that time we had a horrible week in our local hospital being 'monitored' then were transferred to the John Radcliffe Hospital in Oxford. We were there a couple of days and awaiting a broncoscopy when Alfie stopped breathing in my arms during a feed which was so frightening I cannot describe it and had to be intubated. This was supposed to be in for 24 hours and ended up being 10 days in PICU on a ventilator. We really thought we were going to lose him at this point but thankfully he is a battler.
After the roller coaster ride of Alfie's arrival this was like a kick in the guts. When we first went in to Reading neither of us realised the serious nature of Alfie's condition. The morning Alfie choked on his feed felt like the bleakest day ever, worse for Sarah as she was holding him at the the time. Luckily two nurses were with us at the time, the speed with which the crash team arrived was staggering and the room was soon full with over twenty medical staff all trying to resucitate our son.
The next few hours dragged as we waited for news on what was happening.
The staff in the PICU were brilliant especially once we started to feel like a permanent fixture as other children came and went as Alfie stayed.
Making the best of small moments came when after a week we got the chance to hold our baby again, as despite all the tubes and wires we both got a cuddle!
PICU
, what a difference a few days makes.He then went back to the ward (having managed to gain 1/2 kilo in PICU!!!)and was doing so well that we were going home on the Tuesday, he then started to go downhill again and had his broncoscopy brought forward to the Wednesday and they had to give him a tracheotomy as they thought that the tongue may be causing an obstruction. What they didn't tell us and we didn't realise was that he would no longer be able to cry which broke my heart. We saw him in PICU again and he managed to stop breathing because they were not doing the right thing to maintain a new trachy due to lack of information rather than care.
He then started to cry and there was no sound at all just a look of distress.
As hard as it was to come to terms with the fact that my little boy had lost his voice it was harder seeing Sarah's face as she came to the same realisation. I'm just so grateful that we have been able to be there for each other through all of this.
Thankfully this stay really was only twenty four hours.
We had more times of thinking we may lose our precious boy, which for a while we could not admit to each other. Another 3 weeks in hospital being taught how to manage the trachy and we finally came home on Wednesday 1st August. This is after some ridiculous wrangling with our local hospital, which involved us having to prove ourselves by me doing a tube change in front of an audience just so they could tick a box. Thanks to the fantastic training Jayne (the respiratory nurse) had given us this was totally unnecessary.
Going home. Scary and amazing in equal measure. Not having the support of the hospital, but having total independence. I don't think either of us slept for those first few days.
We however still have no firm diagnosis and the prognosis is that he needs to grow out of the trachy and into his large tongue/small jaw etc.
I have to say that it's the not knowing that is/was so hard...
Despite everything Alfie still gained weight in hospital
Whilst in PICU he also developed a really nasty infection from the central line in his leg, they had to treat this with a long course of heavy duty antibiotics for more than 2 weeks. These then gave him a horribly upset tummy for a number of weeks and we are now still trying to deal with the constipation after effects!
The paediatric consultant recommended a tiny bit of juice in boiled water and it works a treat. I have to say my boy is a once a day man, can see him heading to the potty with a newspaper before long.
What can I say....that's my boy!
He gets very distressed if he can't go which is fun as he has another issue of breath holding and going blue when distressed, i.e. if you wind him or don't feed him on time. His favourite game is the early morning feed, standing up (since 11 weeks, strong little man), going purple and hanging off my hair, great at six in the morning!
Other than the trachy he is doing really well now and is a strapping 7.2 kilos (16lbs) and already almost out of 3-6 month old clothes at 15 weeks (he is very long!). He certainly doesn't look like a poorly baby it has to be said. We are just about coping as it is a incredible responsibility looking after the trachy involving suction units and all sorts, no such thing as just popping out any more!
I spend my days changing the tapes around his neck and suctioning the secretions from his tube. This has to be changed every 2 weeks which is horrible as you are effectively taking away his ability to breathe for a few seconds. This is along with all the usual traumas of being a new first time mum.
About to start tackling the weaning issue as he has 4 7oz feeds and 1 9oz and isn't full after that!
Motherhood (after fertility issues) is not quite what I thought it would be! Spending only 1/2 hour in my own home in 7 weeks wasn't what was expected. Thankfully Stuart has been with me throughout as my total rock and will be at home for a while longer.
Sarah, Stuart and Alfie Jake. X
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