Being back in hospital feels very strange and yet very familiar all at the same time. For the first eight months of Jessica’s life, this ward was our second home and whilst it’s been two years since we were last here, in many ways it feels like it was almost yesterday.
My big girl has made me so proud over the last couple of days. I’m proud of how well she has coped with the whole process of being back in for a cardiac catheter procedure. She has taken it all so completely in her stride and was even quite excited at the prospect of “going to the doctors for a sleepover.” That beautiful smile mostly remained in place throughout all the pre-op preparations (blood tests, cannulations and removal of “stickies” being notable exceptions). She didn’t grumble at not being allowed breakfast and was quite excited when the theatre trolley (or “carriage” as she called it) arrived to take her to the cath lab. Even in the anaesthetic room, she was happily engrossed drawing pictures on a magnetic drawing board whilst providing a running commentary on what she was drawing – a wonderful distraction from everything that was happening. The “sleepy milk” going in her arm felt a little funny but she went off to sleep quickly and fairly happily.
Leaving your child and returning to their empty bed space is, for me, always the worst part – even when I know it is for a relatively minor procedure. I am generally very good at holding back the tears and staying calm until after I have left Jessica, but there is always that moment just after I walk away when I can no longer hold them back. The hospital chapel is always my first port of call – that time to sit somewhere quiet, light a candle and pray for my little girl and the team caring for her always helps me to take a big deep breath and find the strength for the wait ahead.
This time, thankfully, the wait didn’t feel too long – helped by having Sophie to provide some wonderful distraction as we had fun together in the playroom. Once Jessica was out of the cath lab, Sophie stayed with Daddy while I went to collect a very unhappy little Jessica who was in need of a lot of Mummy snuggles. It wasn’t too long though before she started to feel better again and that beautiful smile began to reappear. Within a few hours, she seemed quite happy again and eager to go back to riding the Little Tikes cars up and down the ward.
The purpose of the cardiac catheter investigation was to give the team more information about Jessica’s current cardiac state and help them plan when her big heart surgery might take place. The results seem fairly encouraging – the pressures are good enough for the Fontan to take place, although there is a little concern that one of her lung arteries is (and has always been) quite small. It may be that this will grow a little more given time, but equally it may be that the increased blood flow that would result from the Fontan would help it to grow. With regards to the next stage, the catheter indicates that the pressures are good enough for the Fontan to take place, but with things being fairly stable at present, there seems to be no urgency. The team will discuss the results at their next team meeting and may make a suggestion for when it might take place but will also consider our thoughts on this too. We’ll know a little more once the team meeting has taken place.
Thinking ahead to next surgery has naturally left me feeling unsettled though. There is a huge part of me that wants to put it off as much as I can, although as hubby has reminded me, it has to happen some time, and in all honesty, there will probably never be a point at which I feel ready for her to have it. As parents, we try to do everything we can to keep our children safe – there is such an overwhelming urge to protect them as much as we can – and to know that there is so much that is beyond my control is hard to accept at times. To have to trust someone else with your child’s life is utterly terrifying and yet I know I have no choice but to do so.
For now, we’ll play the waiting game a little longer and keep making memories, enjoying the moments and making the most of everyday family life. No amount of worrying about tomorrow will change what will happen – all I can do is keep focusing on today, on that beautiful smile of my precious little girl and be thankful for the here and now. She is a little trooper and I am so amazingly blessed to be her mummy.
Oh bless you all Louise.
Her little face…she did so well, as did you.
Fingers crossed the team meeting goes ok and the news to come is positive.
You’re all superstars in my eyes.
Sending much love and hugs, Gem.x
Thank you Gemma – she was so amazingly brave. So glad to be on the other side of it and home again! x
What a beautiful post and Jessica really is an amazing girl. I love that she was excited about a ‘sleepover at the doctor’s’ and was busy chatting and drawing right up until the last minute. I remember my boy having his teeth taken out under general anaesthetic at the the hospital (he was 5 and had half knocked them out), walking away for him to go for his operation was horrendous and I cried floods. And that was just teeth!
I hope the results give you a better idea of the right time for the big operation and you feel happy with that. x
Thank you Sarah – I don’t think it is easy with a child having a general anaesthetic no matter how minor the procedure is. Seeing Jessica so happy and relaxed about it all helped a lot and made it easier for me to stay strong until she was asleep but I still had to have my little cry afterwards x
Dear Louis George. Read the post in full and word by word. Each time felt the feelings of a mother. I am glad you keep it strong , this supports the child a lot. I wish the sweet little girl an easy medical care which makes her life easier. She is a brave little sweetheart. Wish you the best for both of you.
Thank you Fran – she is so brave and I was so proud of her. So good to be home again and on the other side of it.
I am so glad that everything went well at the hospital, I was keeping an eye out for updates and the pick of her smiling after her procedure just melted my heart! It must have been so difficult for you all. It sounds like Jessica took everything in her stride – she is just incredible. Such an inspiring little lady. I hope the bruising heals quickly.
Thank you Jenni – it was lovely to see her smile return again and I was so amazed by how well she coped with it all. She does look very bruised where she’s had various needles in her but she’s not been too bothered by it thankfully.
This made me teary a bit. Can’t even begin to imagine what it’s like. Jessica is a lovely and brave girl! So pleased the results turned out good. Will pray for her continued good health. Sending lots of love and positive energy to you and your little one 🙂 x
Thank you Dean – she was a little superstar. So glad that it all went well x
Aww! Sending hugs!
It is strange how they get excited about hospital. My girls were the same.
It sounds like Jessica did so well! Good luck for the results…
Thinking of you x
Thank you Kim. I was glad that she was so happy about going to hospital – it made it all so much easier x
You’ve been in my thoughts these last few days, I cannot imagine what it has been like for you but so glad she is ok. You are so right, worrying about the future is pointless so just enjoy every moment as it happens. Here’s to a wonderful summer of fab memories. xx
Thank you Katy. I’ll certainly be making the most of the time before the next op has to happen! x
Oh love her. What a little trooper. Sending extra hugs your way you are a trooper too xxx #tribe
Thank you Sarah – hugs always appreciated! 🙂
What a trooper indeed! The very best of luck for the future ops and i hope she keeps her lovely smiley demeanour. Well doe you for being brave, I’d be in bits. #triballove
Thank you Jasmine – it helped with Jessica being so relaxed about it all, made it much easier for me to be brave for her.
Jessica sounds like such a wonderful girl, being able to deal with all of this. So glad she has such a lovely mom like you to take care of her. I can’t imagine what going through this is like. I gad some serious issues as a child and am always amazed at how strong my mom was through it all. Glad she has recovered from the procedure. #TribalLove
Thank you Sarah – she was amazing and it definitely made it easier for me to be strong for her. So glad to be home again! Hope your serious issues from your childhood aren’t causing you any problems in adulthood.
I am the same when my little boy is under – no matter what the GA is for. Glad the procedure went well. These heart babies keep us on our toes. Beautiful girl #loudnproud
Thank you – they certainly do!
Oh Louise. What an open, honest, and touching post. Thank you for sharing your journey. Jessica sounds like an amazing little girl – as do you and your whole family. It’s lovely that she handled everything so positively. It must be an agonising decision to have to make with regards to the next stage, but you’ll know when the time is ‘right’. You’re so strong. It is wonderful you are enjoying the here and now. X
Thank you Rebecca – we’ve been so lucky that she’s come this far and to see how well she copes with everything makes it so much easier for us to stay strong for her. The next stage is a big step but we’ll make the most of the time we have before we have to take it! x
Oh I’m so glad that this week went well. I read your Friday focus too and yes brave seems very apt. For all of you though. I really hope you get some clarity soon but your feelings about wanting to put off any major operation are very powerfully put. I really admire the way your focus is on memory making and fun and love with your beautiful family and not letting worry consume you. Very much enjoyed the pics of Jessica and Sophie playing in the little tikes cars! X
Thank you so much Lucy – hubby’s very good at reminding me that worrying about the future won’t change it which helps me keep focused on the here and now whenever I’m having a big wobble about it all. Loved watching the girls racing each other down the corridor – it was such a lovely moment 🙂
Well done to Jessica and mummy! How brave you are, no wonder you have a quiet little cry as she is taken away. It must be so hard as a mummy. She certainly is a little star. Thanks for linking up to #loudnproud
What a trooper. I love the way kids live completely in the moment – this is so much harder for you of course and I wish you all the very best for the next stage . We have friends whose 8 mth old baby girl had an emergency heart transplant at GOSH. She is in my son’s year at school now aged 11 is thriving! x
Aww, I love the idea of a “sleep over at the doctors” – so cute! Beautifully written post, and I hope the next op goes well (: x
#triballove
Oh Louise this made me cry. You are amazingly brave and I felt such empathy with you when you talked about returning to the empty bed and how it feels putting your child’s life in someone else’s hands. I am so glad that you have your faith, your lovely husband and Sophie to help you through these times and a whole lot of us in your virtual world supporting you too. I am so glad the investigation was a success. Strength for the coming times lovely lady! ❤️
It sounds like Jessica did amazingly well, as did you. Lots of love xxx
Aww, what a little trooper, sounds like she was super brave which always helps mummys.
Hoping the next op goes well x
It sounds like you were both very brave at the hospital. I was in tears just reading about going back to the empty space and waiting for your baby. I really hope the team meeting goes well. You really have a good outlook, I need to keep remember to stop worrying about the future and live for today. Give Jessica a big hug from us.
Thanks for linking up with Small Steps Amazing Achievements :0)
x
What a brave girl she is. I know how hard it is to trust someone with your child’s life, but I am so grateful for the amazing surgeons we have and their miracle working hands x