Well... it has been a long time since I have updated this blog. A lot has happened including the big cleft repair. It turns out once your baby starts crawling and moving you suddenly have a lot less time and the days become more tiring so I hadn't created the time to update the blog until now. So here we go!
Please be aware some photos/videos may be upsetting as there is obviously a baby in pain there. I will say now for anyone yet to go through this with their baby, that the painful phase and the hard part of recovery was very short - so don't let the clips worry you. I'm sharing the good the bad and the ugly to document the experience as a whole. But everything turned out okay a lot quicker than I thought it would.
We got our repair date in July and were surprised to find out that our cleft surgeon wanted to do the repair at about 10 months before all the winter bugs started going around. We originally were told at birth that for Roslyn's type of cleft, it would likely be closer to a year for the repair to happen as the hole in her mouth was SO wide and SO big across both the soft and hard palate. This is because the cleft stays the same size but while she grows the material around the cleft increases as she gets bigger -giving them more material to work with. As she is a big girl in the 90th centiles for everything they were confident in doing it earlier than standard.
Here we are at our cleft review where we got our repair date - looking at Roslyn was our fab surgeon Mr Loshan Kangesu at Broomfield hospital.
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Our repair date was the 05th of October 2022. It was nerve wracking. The initial worse part was waiting for going into surgery. We arrived at the hospital in the morning with a starving baby who had missed her breakfast and didn't know why (as she obviously had to fast before surgery).
Once we got to the ward she was allowed about 30ml of clear liquid per hour but she had to drink it within the first 15 minutes. This was a bit of a problem as she wasn't too into water at this stage - however we found out that she likes diluted apple juice a few hours in and she was able to keep hydrated with that.
We were lucky when it came time to put her under the anesthetic as it is often standard for only one parent to be allowed in with baby - but our anesthetist was kind enough to allow both me and my husband in. They put her to sleep via gas in a mask over her nose and mouth - she sat on my lap as I held it over her. This is one of the hardest things I've had to do as it takes a few seconds to kick in and the gas smells funny so they try to pull it off and can become very distressed in these moments. I cuddled her while my husband looked her in the eyes and sang her to sleep and she was straight in theater after that. They did not do anything with IV's or needles etc until she was asleep thankfully.
Then the wait...
She was down for about 3/4 hours and only one of us could go to the recovery room.
She was initially very sleepy as she still had a lot of medication in her system. When she did wake she was very upset.
At our hospital it is protocol for babies to have an NG tube fitted during the operation as a backup measure for the first few days if they do not take in any food or milk. Due to Roslyn's difficulty breathing at birth and her small airway her surgeon felt an NPA was also necessary at least for the first night incase of swelling further compromising her airway.
They are keen to offer her milk as soon as she became alert as obviously she hasn't had anything since the night before, but sadly she wasn't interested in her bottle (this is perfectly fine and usual - it can take a while before they feel able to feed - so I tried not to worry).
She was back on the ward within an hour and all she wanted was to sleep while being held. She would not calm down enough to sleep in the cot so my husband and I took turns throughout the next few days holding her 24/7.
We tried to give her bottle at regular intervals while awake but did not have any success while in hospital.
Ultimately she did not take to the bottle at all while in hospital and we had a better time with pureed food which we could spoon feed. We attempted some custard on the evening of her repair - she was still in a lot of discomfort but clearly wanting to try so hard to eat. We had to either get her to take a sip of water from her sippy cup after each meal or syringe water in her mouth if she refused to sup from her cup (to stop food sitting on the wound and lower risk of infection).
Initially pain was managed with ibuprofen and paracetamol (this was based on her weight so slightly more than the standard dose based on age on the bottle) but it was up to us as parents to assess her pain and request if she needed anything further. We did request morphine over the initial 24 hours a number of times as it was clear she needed it - once it kicked in she was a lot more mellow and it was clear her pain was more under control.
As you can see in the video and photo above she is managing her pain well by the evening of the operation day.
Annnnd.... by the next day she was smiling again. She also was able to have her NPA taken out after the first night as her breathing was good.
Annd on that day after her operation she did VERY well with her food - we brought her favorite home made spinach puree and it felt so good to see her eat.
As part of her discharge plan we had to note down her intake - she had to hit a target amount of fluid (spoon fed food counted as 5ml per spoon) within a certain amount of time before they could take her NG out or let her come home.
We were discharged the next morning - so in total we had 2 nights in hospital. Part of her discharged criteria was to be managing her pain well and be morphine free for at least 8 hours which she smashed. I think she was morphine free for about 16 hours by the time we went home.
As soon as we got home Roslyn did even better (it's more comfortable in your own surrounding isn't it?) and happily drank from her bottle. This made me tearful as she hadn't had her bottle or any milk at all within hospital - only her pureed food.
Once we were home we had to try and keep her hands out her mouth. We used this product. I and found it worked well. We quickly saw she didn't need it during the day as she was naturally keeping her hands away from her mouth but did opt to keep it on at night time where she wasn't watched 24/7.
We kept up round the clock pain relief at home with both ibuprofen and paracetamol. She was weaned off the ibuprofen at a week post op and we continued paracetamol until about 2 weeks post op. In that time she gradually did not need doses through out the day but we gave her it at night time. By 2 weeks post op she was pain med free.
When we returned home she was right back to her normal self. The video below is only 3 days post op and she is giggling away happy as anything. It's as though nothing had happened. Our babies really do bounce back and it's a bigger thing for us as parents than them!
Her palate healed very well and very fast. Here is a comparison of pre repair and and 1 week post repair:
