The last few weeks has been a real turning point. Jake's getting huge as he's on 3 meals a day but still hasn't dropped a bottle. He's not crawling but he is now consistently rolling over from back to front. He can't get back yet but he's half way there, the clever thing.
He's been restless and has had an upset stomach over the last few days but we discovered a new tooth which could explain it. As each tooth comes through I feel we're nearer a full pattern of sleep which is, I suppose, the holy grail. That said, if he sleeps until 6am + every day for ever that's o.k with me.
He's also a lot more fun now, really loves being upright, especially in his bouncer. He loves to bounce and I feel guilty to say that it makes me laugh when he's in it and starts crying but continues bouncing! He laughs almost on demand now and LOVES the bath. He lays there thrashing his legs up and down and making snow angel shapes with his arms. I get soaked every night but it's a lot of fun.
We went back to see Prof Haers on Tuesday and he was very pleased. I like to think that he would be honest and at the very least not say how pleased he was, if he wasn't. We have seen a couple of repairs where the nose didn't come out too well and we wondered what he'd have told the parents...then we worried that Jake's nose doesn't look to us like it looks to other people. Then we realised how paranoid we were being and pulled ourselves together. We're chuffed to bits with his nose (as the Prof was) and if anyone else sees it differently then that's up to them.
The Prof explained the next procedure which doesn't sound like much fun. They get his mouth open as wide as possible and using magnifiers, precision instruments and a steady hand break up the muscles in the edges of the exposed palate so that they can then be pulled into place and stitched together. Again, thank God for these people.
There are two unlikely but possible complications post op. The first could manifest itself in a matter of days and is, to an extent, the luck of the draw; this is when a hole, a fistula, appears in the repaired palate. A small fistula ought not to be a problem and in many cases would not mean further surgery. They would only look to close it up again if it were to cause social or psychological problems, i.e milk comes out of the nose at school or an overly nasal twang to speech. There's a 20% chance of a fistula and another 20% chance of having to have it repaired should it happen. That said, I'm done with percentages.
The other problem is that the new palate is too short or two long. Both cases can have speech implications and the chances are similar to a hole appearing.
Less common still is that as Jake's skull and face develops there could be jaw alignment issues. This is actually more common in people without clefts but it's when the lower jaw is less prominent than it should be. There was a boy in the waiting room who looked (to me) as if he was affected. Without sounding cruel, you could tell something was up and he'll need it dealt with for his own self confidence when he gets a bit older. The problem is with bone related operations is that the body needs to have stopped growing at its fastest rate before they happen which means that the child will have had the issue throughout the time when kids are at their most vindictive and predatory. I felt sorry for this boy and hope he isn't getting too much of a hard time.
We sat next to a couple with a 5 week old boy in the waiting room who, like us had had the heads up at the 20 week scan. Their baby was to be born with a bilateral cleft lip and potentially a cleft palate too. Bilateral cleft lips are a bit more shocking as they tend to go up both nostrils and look much messier. It sounds harsh but it's true. Although it was their second child, I can imagine they went through all the worry and heartache we did, only a bit worse because the cleft was supposedly going to be more severe. They needn't have worried as the clefts are literally like tiny snips in the front of the lip. Neither the gum line or top of the lip is affected and the palate is fine. It must have been the ultimate sense of relief. Going from thinking about a severe bilateral cleft, a minimum of two operations, speech therapy etc to having a lip repair which is not much more than a collagen injection. Good for them, they'll be fine.
So we're off on Jake's first foreign holiday. Off to sunny Spain which should be a great temperature for March, somewhere in the late 60s/ early 70s. I like it hotter but it's best for Jake that it's not crazy heat. We're going Tuesday to Tuesday so the airport and flight ought not to be too much of a hassle. If he cries for two hours then so be it. If anyone has a problem, I may have to remind them that a £60 Easyjet ticket doesn't come with a soundproof club seat and they might like to consider switching airlines if they don't like the sound of crying babies. How things change, I remember thinking 'shut that f^%$&*" baby up' on any number of flights before. Now I know!
We really need this trip, it's been 10 months since we went to Egypt and the walls have started to close in. Work, like many others at the moment is tricky, balancing staff expectations with clients' shrinking budgets is never much fun! That along with 6 months of broken sleep on the back of 5 months of anxiety means we need a break. Get your violins out if you want!
Post holiday report will follow.
He's getting big!
