Thursday, August 27, 2009

Paige's First Trip to Children's Hospital

This all seems unreal at times. I can hardly believe that I had to take my 5 day old to a Plastic Surgeon, Speech Pathologist, Ear,Nose,Throat Doctor, Orthodonist, and Pediatrican all in one day. It made for a REALLY long day for Hal and I. We left the house at abou 6 and got home at 6pm. Long day to say the least. We first met with Matt, the speech pathologist (remember these names because now we are apart of this unfortant family). Matt was born with a bilateral cleft lip and palate. It's comforting to know that he has been through this whole process himself and now is the lead person on our team. Very comforting. Matt was extremely helpful in answering many of our questions. Here's a few of the answers.

Is this hereditary? Yes and No. Hal and I both have it in our families but it's so far down the family tree that he doubts that's the cause of all this. We will meet with a genetistic prior to Paige's surgery. Hal's nephew also has blood platate disorder, so Paige will be tested for that before she goes into major surgery.

Will she have hearing loss? Matt said 99.9 percent chance she will NOT have hearing loss. We have to follow up with the Audiologist here in Meadville to have her retested as she failed her left ear in the hospital. If she fails it again, there is a REALLY good posibility that with her first surgery, she will get tubes in her ears. We are hoping this doesn't happen obviously but probably will as he said most CLP children do have them but without any problems.

Will she have speech problems? He said probably could but if the tubes are placed in, she probably wouldn't.

Will she need a bone graph when she's older to close the bridge of her teeth? Will she have teeth? With this question we were given a choice to help her not have a bone graph. With this special device I will discuss in a bit, she will probably NOT need a bone graph. Is it a guarantee? No but a really strong possibility. And the likelihood that she will have teeth is high but that we do not know yet how they will come in. That won't be known until they do come in.

So while we are discussing all these factors of concern for Hal and I, they tell us that her surgery could be in as little as 6 months. AHHHHh!! Seriously? This is horrible..she has to wait till she's 6 months? But, the story does get better. Matt explained about the NAM (nasoalveolar molding). If you want to read more about it, google it. Or check it out a little here...

Truly amazing results can happen with the NAM. We met one little boy that had it done and at 6 months had his surgery. He looks amazing. He had basically no nose and they were able to mold his nose prior to surgery so when the surgeon operated, it was much easier. When we first saw this pictures of what the NAM would look like. It was like a sharp tool to the heart. Seriously, my poor baby has to wear this basically mouth guard in her mouth with tape on her face. But, when you see the's truly remarkable. So as much as we don't like it, it really isn't an option not to do this. IF it results in less surgery for Paige, I would do anything!

Paige was then fitted with the NAM. I will spare you the horrible details as it is not a fun process for her and I'm pretty sure she hates Matt now. But, the orthodonist made her impression and 3 hours later she was fitted with the NAM. She actually did very well and ate her bottle right away.

While we talked to the orthodonist, who makes the decisions for the surgery dates, I asked when she thought we could do the surgery. She said that because Paige's bridge of her teeth has a very small opening, she thinks in 3-4 months!!! WHOOHOOO that's much better! I was pleased with this rather than 6 months! She will be fitted for the nose modeling component in a few weeks when she is more used to her NAM. Right now, she hates it. She eats great with it, better than before. But, she really hates this thing across her face. She tried to rip it out already a few times. So we have to keep mittens on her hands. Hal keeps reassuring me that in a few days she won't even care anymore. BUt, it's so hard to watch her cry because she wants it out. She has to wear it 24 hours but we can take it out to wash it and change the tape. I think we will limit that for a while until she's more used to it.

While she was in the procedure for the NAM, they did notice that she has a bit of breathing difficulties. She sucks in hard when she is mad and also is very squeeky. I told them that Maddie did the same thing and that I didn't see it as a problem. They want to keep an eye on it and make sure she is getting enough O2. If she does not get better, she will then need to have a scope put down her throat to look at what might be causing it. We will PRAY that this doesn't need done. It's just another procedure that she would need. Pray with us that she out grows this before then.

So for now, we are focusing on the fact that she has to get used to the NAM and that surgery could happen prior to Xmas. We have to make weekly trips to Pittsburgh to get her NAM adjusted. Not so fun!

She is truly a trooper though!


Rosalie said...

Great to hear you were able to get so many answers in one day. This must all be so hard and such a whirlwind. I hope in between you are able to get in some time just snuggling and getting to know your new little girl. Hugs to you and Paige!

Jenny said...

She sure is a little trooper with such a great mommy there to support her. So many things to go through after a few short days of giving birth. Hang in there!!!!

Rachel said...


You are in my thoughts and prayers. You are great mother and you have a little fighter on your hands. I am glad you got answers and I will pray for a fast surgery date.


Vandy said...

What troopers all of you are! Sounds like you have an awesome team to work with and having the lead be someone who has personally been through this is amazing! Keep your chin up!