I went to pick up Phoebe's twin brother Sam on Wednesday lunchtime as he was coming to stay with us for a few days. I think that was the most upsetting part of it all for Mummy....saying goodbye to her little boy. She watched me drive away from her living room window and waved until we were out of sight.
It was a joy to have Sam with us. I was exhausted by the time that I took him home but to have him here, see his progress, play with him and really get to know him was wonderful. He had an off day on Friday which is most unlike him but he was in a relatively strange place without his family and sleeping in a travel cot. It must have been so unsettling for him. There is also that fact that he is a twin. There are many reports of twins who are separated feeling each others emotions and even pain so it is quite possible that he could sense that Phoebe was not feeling well and that made him feel the same. Who knows? Anyway, on Saturday he was back to his usual self...smiling, laughing and almost crawling! He also loves scrambled egg and baked beans, mashed banana and Weetabix and has a strong dislike for savoury premade foods of any kind!
Just like my Mum used to make for Kirsty when she was little - scrambled egg and baked beans. He loved it.
Clever boy Sam😊
Having Sam with us also helped me to not focus and worry too much about Phoebe and about Kirsty. Having been in a very similar situation when my daughter had palate surgery over 30 years ago, I was reminded of the time between when your baby goes for surgery and when she gets back from recovery, the time drags,you have no idea how things are going and you watch the clock incessantly. You can't eat, you can't sleep. You don't want to leave the hospital in case something happens and they need you urgently. Things have changed so much though and Mummy and Daddy were able to get a bit of rest once Phoebe went to theatre...which wasn't until mid afternoon so you can imagine how long the morning must have seemed to them all. Phoebe was also not allowed a bottle or food from 3.30 am so she went almost 12 hours with food before surgery.
However, all reports are that she was a trooper and took it all in her stride, bless her heart.
Several hours later we got the call to say that she had returned from surgery and was back on the ward. All seemed to have gone well. Due to Stickler Syndrome , Phoebe has a difficult airway apparently. Basically, her airway is small and so they had to be cautious about anaesthesia especially as the surgery was taking place at the back of her throat and there would be swelling as a consequence. As expected, she returned from theatre with a tube in situ to keep her airway open in case the swelling caused problems. Of course, Phoebe being Phoebe, as soon as she felt anything like awake she was attempting to pull the tune out. She succeeded eventually and, luckily, it wasn't a problem! She also managed to pull out the cannulas that were in both feet overnight too. That's our Phoebance!
The staff looking after her at the hospital described her as a 'princess' and a 'diva' which is exactly how we all refer to her. They said that she is incredibly determined and strong and will not do anything that she doesn't want to. That trait will stand her in good stead for years to come I am sure.
There was a little concern when her sats dropped overnight on Friday and there was a possibility that she might have to stay in hospital for an extra night but, in the end, the decision was made for her to be allowed home and so that was that. Bags packed, medicines collected and then a train journey home which she hated every minute of by all accounts.
I took Sam back home to his family on Saturday evening and the family were reunited. I swopped children with Mummy.....she cuddled her boy and I cuddled Phoebe who fell asleep on me for literally a few minutes and was then wide awake again! Holding her stirred up so many emotions in me. It was just like holding Kirsty all those years ago, feeling so grateful that she had survived the surgery, trying not to think about the next surgery or medical appointment, just cuddling her and wanting her to feel safe, secure and loved.
Phoebe two days after surgery. Back at home with her family and in her own bed. Beautiful brave girl.
So, that's it for now. Phoebe and Sam will soon be a year old and there is already a party organised. Phoebe needs to be kept away from crowded places and situations where she might pick up a cold or any bugs for 2 weeks, she needs to take her medicine(!) and she needs to keep feeding well. Hopefully, the next week or so will go smoothly and the family can regroup and focus on each other for a while.
Thank you, from me, to all of you have have supported the family, not only over the past week, but over the past year. To everyone who has been in touch in any way - either with the family or with me - thank you so much. It means a lot to everyone involved.
So it's onwards and upwards. Princess Phoebe and Super Sam are continuing their adventure.
Have a good week everyone.
Extra love to my sister and brother in law and to my sister in law too.
xxxxx
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