Remember Carly Mara? She wrote some time back about her daughter, Ava, who was born with a cleft lip and hip dysplasia, then they found out she also had cystic fibrosis.
Part One of Carly’s story explained the emotions of when Ava was diagnosed with CF. Part two is going to explain Ava’s cleft repair.
I can sit here and tell you how amazing and powerful the following will be. But honestly, I cannot find the words that best explain this following piece. Carly’s ability to explain the emotions she went through has you feeling like you are sitting beside her, experiencing it with her.
Monday 7th February at 1:15pm, 2011 was the day of Ava’s Cleft Lip repair. A day we’ll never forget!
I’ll just take you back to the day we were told of our baby’s cleft.
“Your baby has a DEFECT on her face” were the words that came from the sonographer’s mouth. I froze.I don’t think I thought one single thing at that point. I was totally numb, gutted and crushed. A defect?!?! What kind of defect?!?!
They couldn’t tell us much more than that, and oh, they were pretty sure the baby was a girl. (That’s the only reason we went for that scan, to find out what sex we were having.)
From then we had to have quite a few more scans at a place in Leederville, where they do very detailed scans and specialise in clefts and the like. We were given a picture of our baby’s face at out next scan in which you can see a line from her nose down to her lip, but no-one could tell us exactly how big, or if her palate was involved, just that they think its might be 2mm long but they had to keep monitoring it every few weeks to make sure it hadn’t grown or changed.
Probably the worst thing I did, a lot, was Google images of Clefts. Oh my gosh!! Not a good thing to do, but apparently it’s the first thing any mother does when they receive this kind of news. There are some awful pictures out there. My hubby would always tell me not to Google, but I HAD to, I had to try to find the kind of Cleft out baby had…even though I knew deep down, I wasn’t going to know until she was born. 20 weeks of not knowing, it almost killed me then as the weeks got closer to her birth, I started getting anxious and just wanted her here it was torture!
Finally, on the 21st August 7:52pm, Ava arrived.
They placed this very warm and slimy baby up on my chest. I looked down at her beautiful little face… and there it was. Everything from then on is a blur, but my reaction to her precious little mouth was “Oh my gosh!!! her lip, her lip, her lip, look at her lip!!!” as I was crying loudly. (I only know this from hearing it on her birth video and my hubby telling me.)
It was like being sooo happy, the happiest you’ve ever been, and yet grieving at the same time. It was bitter-sweet. The pediatrician had a look at her mouth and said there was no palate involvement, just an incomplete cleft lip, (incomplete means the cleft stops just before the nostril) which was a weight off my shoulders, cos that meant to transfer to PMH for her to be fitted with a bonnet to pull the lip together, but still the possibility of not being able to breastfeed. which I really wanted to do, but thank god she was straight onto my boob and I felt more relief.
I’ll be honest, it took me a good few hours that night to get used to her Cleft, I couldn’t stop touching it, kissing it and crying in sadness that it wasn’t supposed to be like this. She wasn’t meant to go through this. It’s just not fair. Grief of what have been…and happiness because she was finally here.
It was a long few months of getting her weight up for surgery. They usually repair Clefts at about 12 weeks. but due to CF, Ava hadn’t put enough weight on. She had to be 5kg for surgery to go ahead. We finally reached that goal when she was 5mths! (Mind you from that 5kg mark her weight gain zoomed!)
Surgery day, fasting and a very sad baby. We were once again thrown through a loop of emotions. By this time we loved Ava’s Cleft sooo much! They say Cleft babies have the biggest smiles and that’s sooo true! The kind of smile that lights up a room, it was beautiful.
Not knowing what her mouth was going to look like minus the cleft, then what her face was going to look like. The shape of her nose will change too.But we had faith in our surgeon Dr Vij Vijayasekaren. We knew she would be even more perfect.
Chris and I kissed Ava’s face and mouth over and over and over, took sooo many photos with her while we waited for her to go in then it was time to hand her over (I don’t think that part will ever get any easier). A couple of hours later it was time to go and see her in recovery. I had butterflies and felt like I was going to be sick… but I was excited too! That walk over to the big bed with a tiny little dark-haired baby was sound asleep on it felt like it took hours. There she was, that little baby who was already every inch of perfection to us, but now with her new mouth.
I cried and kissed her so gently. The part that startled me a little was the stitches, they were black. She also had nasal stents which I wasn’t told about, so that was a bit scary looking. Her face was really shiny her eyes puffy and lips swollen. It was heartbreaking to see her look like she was in so much pain.
We were taken back to the ward a little while later, where we just held her and cried. Then the fun began trying to feed her, no more breast… we had to use a special feeding bottle with a spoon on the end of it. You would squeeze the bottle gently the spoon would fill up and you’d have to master the art of tipping it into your baby’s mouth. But because she couldn’t move her lips much every second mouthful would dribble out which after a few hours gave her a nasty looking rash under her chin and her bibs just kept getting soaked. Even the nurses had to really get used to using the bottle to feed her. Ava had splints on her arms to stop her from pulling her stitches. It was sad because she loved sucking her fingers, but wasn’t able to, so she would cry, but then crying
would hurt her mouth. The poor little sweetheart was in a really crappy situation, but there was nothing we could really do. The most comfortable way for her to sleep was on a U-shaped pillow with her arms stretched right up above her head… now that was cute!!
***TO BE CONTINUED***
Keep an eye out for the next installment…and new photos of Ava, the feisty two year old she is now!
Bella and Carly 🙂