And not a moment too soon, as far as I’m concerned. Please don’t get me wrong, I dread the fact that my sweet baby is having surgery again, but life has been so full of drama that I just about can’t take it anymore.
It feels like it’s been a long time since I have updated our blog. I realize it hasn’t even been two weeks, but this may have been the longest two weeks EVER.
As you know, I returned to work on Thursday, February 23rd. The first day was a nightmare. At that time, Gabriel still had the Frank Mover on his face and I didn’t prepare my in-laws quite enough to know how to deal with all the junk that comes with the Frank Mover – he pulls it down with the chains intact, he pulls it down and knocks off the chains, he pulls it down and the Mover falls apart into two pieces, etc. I guess I was so used to it, I didn’t really think about all the things that would appear to be going wrong with it.
Thankfully, that night we had an appointment in Michigan with Gabriel’s orthodontist. He decided to go ahead and remove the Frank Mover as it appeared to have done its job with moving Frank, but it wasn’t as effective as stretching the tissue of his upper lip. No sense in fussing with it longer if it just wasn’t going to work. After the Frank Mover was gone, Friday was a breeze. My mother-in-law quickly mastered how to feed him, just as I knew she would. Feeding is always tricky. There is just no one way to feed him. I feed him differently than Chad, so she had to figure out how he would take a bottle from her. I must admit though, I am surprised it happened so quickly.
Saturday, Sunday, Monday passed uneventfully – and then it was last Tuesday.
I woke up on Tuesday morning and Gabriel had blood on his lower lip and all over Frank. Upon my investigation of where the blood was coming from, I looked at this pin on a white disk that sits just behind Frank on Gabriel’s septum going back into his mouth. This white disk was covered in blood, so I quickly identified the location of the issue. It is not uncommon for this spot to bleed. In fact, every time I have cleaned around it with my Q-tips, I have made it bleed – a little – but not ever so much that the blood actually came out of his mouth. As you can imagine, Dr. W wanted to see him immediately to figure out why it was bleeding, so off to Michigan we went.
The hypothesis Dr. W came up with was that Gabriel’s septum was moving, and the pin was not – thus creating a tear in the septum. To remedy this, Dr. W detached the chain attached to that pin to stop the pressure on that location of the septum. The bleeding stopped. Everything seemed to be just fine. Dr. W decided at this time that it was necessary for Dr. S (the plastic surgeon) to see Gabriel to decide if it’s time for the next surgery.
We took Gabriel to see Dr. S on Wednesday – and good news – he was ready for the next step in this process!!! Wednesday, March 14th we will be having surgery again. The results of this surgery are quite up in the air as Dr. S won’t know the extent of what repairs he can make until Gabriel is in surgery. Because Gabriel has bilateral cleft, he has two openings on his gums, lips, and palate –making repair difficult because it requires a lot of tissue and muscle to repair – something that just isn’t there.
So the plan is, surgery will begin at 7 am. Dr. W will remove the device (which he is allowing me to keep since I asked for it) and then Dr. S will attach Frank to the right side of Gabriel’s gums using donor bone. He will then evaluate whether or not he can attach the left side at that time – if he cannot, he will leave the left side open until the palate repair (sometime before Gabriel is 1) to avoid having another surgery. Big relief to me!! I was so worried that if they can’t close up both sides of the gum during this surgery it would mean our poor baby would have yet another surgery this year.
Dr. S will then determine what to do with Gabriel’s upper lip. The plan is to close the lips going into the nostrils (finally giving him nostrils) and leave the bottom of the upper lip open in two places. If he finds that he needs more muscle to keep Frank and the gums where they belong, he will go ahead and do the full lip repair at that time. Basically, this means that we have no idea what our son will look like when he comes out of surgery. He could have a full set of gums and a full set of lips – or he could have one side repaired and not the other – or he could have any combination of the two. The only thing we really know is the surgery will take 4 – 5 hours.
4 – 5 hours!!!!! This is twice as long as the first surgery and that seemed like FOREVER!!!!! If you thought I grilled the first anesthesiologist, then just wait until next Wednesday!!!!!
Gabriel actually should be able to go home the same day as the surgery – which right now has me all sorts of worried. I know everything should be just fine, but I worry about bleeding, pain management, feeding, and a host of other things that could go wrong. There is an added level of safety knowing a nurse is right outside the room.
Ok – so back to the drama. Last Thursday was fine – I actually worked an entire day! Then Friday…I woke up and Gabriel’s face was covered in blood – about five times more than Tuesday. I put him under the light to get a better look and determined that the blood was not coming from the same place as Tuesday – the white disk was still white. Now I was stumped. The entire device had blood stuck in it, so I was guessing that it was coming from under the device where his septum continues to the back of his throat. Again – we were on our way to Michigan.
I learned Friday why our doctors never let us into the room when they work on Gabriel. I always speculated that they didn’t want to get punched by any parents for the amount of crying the babies do – but now I was sure!! Since Dr. W dropped everything to see Gabriel, he had no assistants to help him – so guess who had to help…I sat in a chair with Gabriel on my knees – his feet towards my chest and his head between my knees. Chad stood at the end of the chair holding Gabriel’s head still while I held down his arms and legs. Dr. W cleaned out the device to get a good look at where the blood was coming from. Feel free to imagine how much screaming and crying were happening at this time.
The consensus was that everything in Gabriel’s mouth has moved so far forward (as it was supposed to) that now his septum was running right into the screw in the device. Chad said it looked like someone had used a cheese grater on the roof of Gabriel’s mouth – it was awful!!!! Dr. W decided to release all the chains on the device – thus removing any pressure on the device. This would, hopefully, allow the device to relax a little and put space back in between it and Gabriel’s septum. Seemed to have worked – the massive bleeding has ceased. He still wakes up with a little blood on his lower lip and Frank, but nothing like it was.
So, now the device is just pinned into the roof of his mouth – not actually doing anything. I worry that things will start to move back to where they don’t belong, but apparently the doctors aren’t concerned as they have not attempted to move the surgery up at all – which is fine with me. I have so much to do at work before I can be out of the office again, that I really need the next several days. I just hope they are baby drama free so I can actually work!!! I also need several days to keep working up some good anxiety in anticipation of the surgery!
Well, that’s enough for now. I am sure I will update our blog one more time before next Wednesday. Until then…
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