Next week is the big day! Next Friday to be exact. It's bittersweet. While I don't want to have my sweet Paige go through surgery, I also thought this day would never come. They honestly say that parents have a hard time recognizing their babies after the surgery. I find that hard to believe but I guess we will see next week!
Today is one of those days that I know Prayer works! A few weeks ago, Dr. V stated that she did not think Paige would be able to have her gums fused at surgery. They just seemed too far apart. Dr. Grundwalt agreed and we were upset. But, we decided not to make a determination on postponing the surgery or going ahead with the intention of a bone graph in the future, until this week. So today, we went to our very last NAM adjustment. I told Dr. V that her cleft moved in the last 2 weeks. She said, "it sure did!" I asked her what she thought and she said, "with it that close, she could fuse it together. It's touching at the top BUT it's up to Dr. Grundwalt to decide if she thinks it will be okay!" I was so excited. That was NOT the response I thought we would get today. Not at all. So not only are we going ahead with the surgery BUT she might still have her gums fused. Now, this is completely up to Dr. Grundwalt to decide and we won't know for sure until the day of surgery but she still has a 1 week and 1/2 until surgery date. Her gums can still move a considerable amount in that time! So THANK YOU, THANK YOU, THANK YOU to EVERYONE who has been praying for Paige. Prayer works, God is good! Keep praying it moves more!
So I figured everyone would want to know as soon as we found out. :) I will be updating the blog with XMAS pics this week too. So don't forget to check that.
PLUS::::: On the day of surgery, I will be borrowing my sisters laptop. The hospital has wireless internet and I will be updating on Paige's surgery while we are there, WITH PICTURES! So be sure to check next friday in the evening for updates! I can hardly believe it's almost time!
Wednesday, December 30, 2009
Thursday, December 17, 2009
Pre-op appt
We met with the cleft team for Paige's pre-operation appt. First we met with Regina, the nurse practiner. She is and always is very impressed with Paige's eating ability. She weighed in at 17 pounds even today. (3 more pounds and we are off to buy new carseats! LOL) Regina gave us more meds for Paige's ear as they are pretty sure that she is going to need to have her tube replaced during surgery. It has not opened up at all since she has had them put in, just too full of junk. Regina discussed Paige's over all growth and things look wonderful. She is healthy!
We then met with a nurse from the ENT clinic. She discussed a study that the clinic is doing on estacian tubes. They will do a full evaluation of Paige's ears for research. It's pretty cool because they will be able to see everything that is going on with her ears. They also pay us for doing it but we thought it would be beneficial for Paige since she is having hearing loss right now. I am going to start American Sign Language (ASL) with Paige so she can have that as suplemental language. It is often times fitting that I have a child with hearing loss. I took classes in college to learn sign language, my dad is deaf, I have friends who have profound hearing loss, and I can be often times (when I'm not out of practice) fluent in ASL. So it "should" come natural to me. To Hal, not so much. LOL
We then met with Dr. V. She did Paige's NAM adjustment and looked at her gumline. While Paige has made remarkable progress. Dr. V does not think that Paige's gumline will be ready for surgery!!! I'm extremely annoyed by this for many reasons. It's almost like they just give up on the NAM! Why do we do it for MONTHS if they are not going to see it through. Plus, I have recently talked with a mom of a baby girl who had an 18mm cleft and it was closed. Paige's was NO where near that. Dr. V and others have been quoted as saying "well most of the babies need a bone graph anyways!" Well, I don't care what other babies have to do, I don't want Paige to have one! (Take that back...Erica I don't want Lily to have one either! LOL) So we discussed postponing her surgery. While I hate to have that done, if it saves Paige from having a bone graph, I would move mountains! We are going to have that conversation again on December 30th at her last NAM adjustment. If her gums have moved since then, we are going to push for a postponement of surgery. IF they have not moved by then, then I doubt they will and we will go ahead with surgery. I'm torn either way! I want her to have her surgery but I also want to save her the PAIN of having a bone graph. People think "oh it's only a bone graph!" But think about it, would you want your 8 year old daughter have bone taken from her hip to put in her gums? I don't! PRAY, PRAY, PRAY!
We then met with Dr. Grundwalt, her plastic surgeon. She once again walked us through surgery and how they perform it. It's through a magnifying glasses and takes about 4-5 hours. It's very time consuming but NOT a major surgery with a lot of blood (as with most plastic surgery things). She will still be under the entire time. After surgery, she will be moved to the recovery ward and then to a recovery room on the 6th floor. She can have visitors later that night (I asked specifically for you Erica!) LOL The only thing we ask of anyone, is if you are planning to visit, please just call ahead of time. We are not sure how she will handle the surgery. She will have tylenol around the clock for a few days and morfin if she needs it. Dr. Grundwalt says that she is going to wait on Dr. V's decision of the gumline but does not see it capable at this point as her gums are still not touching.
We met with Matt briefly today and he gave us some new bottles to try. The pigeon bottles are pretty cool. The best part, SHE CAN USE A REGULAR CUTE BOTTLE! She has to use her tongue to make the formula come out with the special nipple. Pretty cool. I tried it and she was too hungry to care. So we will try again later.
After surgery, NO spoons, fingers, pacifers (can't use one anyways), or anything besides a bottle in the mouth for 2 weeks. She will have the NO NO bands (restraints on her arms) for 2 weeks also! That will suck but it is called "tough love!"
So all in all, we still do not know if surgery is going to happen. My feelings are that it probably will. I get the impression that they are done with the NAM with Paige because everything on the outside looks so amazing! I just think about her future and would like to spare her the agony of having a bone graph. At least she has a good friend who will go through it along with her. I say we schedule them on the same day! :)
We then met with a nurse from the ENT clinic. She discussed a study that the clinic is doing on estacian tubes. They will do a full evaluation of Paige's ears for research. It's pretty cool because they will be able to see everything that is going on with her ears. They also pay us for doing it but we thought it would be beneficial for Paige since she is having hearing loss right now. I am going to start American Sign Language (ASL) with Paige so she can have that as suplemental language. It is often times fitting that I have a child with hearing loss. I took classes in college to learn sign language, my dad is deaf, I have friends who have profound hearing loss, and I can be often times (when I'm not out of practice) fluent in ASL. So it "should" come natural to me. To Hal, not so much. LOL
We then met with Dr. V. She did Paige's NAM adjustment and looked at her gumline. While Paige has made remarkable progress. Dr. V does not think that Paige's gumline will be ready for surgery!!! I'm extremely annoyed by this for many reasons. It's almost like they just give up on the NAM! Why do we do it for MONTHS if they are not going to see it through. Plus, I have recently talked with a mom of a baby girl who had an 18mm cleft and it was closed. Paige's was NO where near that. Dr. V and others have been quoted as saying "well most of the babies need a bone graph anyways!" Well, I don't care what other babies have to do, I don't want Paige to have one! (Take that back...Erica I don't want Lily to have one either! LOL) So we discussed postponing her surgery. While I hate to have that done, if it saves Paige from having a bone graph, I would move mountains! We are going to have that conversation again on December 30th at her last NAM adjustment. If her gums have moved since then, we are going to push for a postponement of surgery. IF they have not moved by then, then I doubt they will and we will go ahead with surgery. I'm torn either way! I want her to have her surgery but I also want to save her the PAIN of having a bone graph. People think "oh it's only a bone graph!" But think about it, would you want your 8 year old daughter have bone taken from her hip to put in her gums? I don't! PRAY, PRAY, PRAY!
We then met with Dr. Grundwalt, her plastic surgeon. She once again walked us through surgery and how they perform it. It's through a magnifying glasses and takes about 4-5 hours. It's very time consuming but NOT a major surgery with a lot of blood (as with most plastic surgery things). She will still be under the entire time. After surgery, she will be moved to the recovery ward and then to a recovery room on the 6th floor. She can have visitors later that night (I asked specifically for you Erica!) LOL The only thing we ask of anyone, is if you are planning to visit, please just call ahead of time. We are not sure how she will handle the surgery. She will have tylenol around the clock for a few days and morfin if she needs it. Dr. Grundwalt says that she is going to wait on Dr. V's decision of the gumline but does not see it capable at this point as her gums are still not touching.
We met with Matt briefly today and he gave us some new bottles to try. The pigeon bottles are pretty cool. The best part, SHE CAN USE A REGULAR CUTE BOTTLE! She has to use her tongue to make the formula come out with the special nipple. Pretty cool. I tried it and she was too hungry to care. So we will try again later.
After surgery, NO spoons, fingers, pacifers (can't use one anyways), or anything besides a bottle in the mouth for 2 weeks. She will have the NO NO bands (restraints on her arms) for 2 weeks also! That will suck but it is called "tough love!"
So all in all, we still do not know if surgery is going to happen. My feelings are that it probably will. I get the impression that they are done with the NAM with Paige because everything on the outside looks so amazing! I just think about her future and would like to spare her the agony of having a bone graph. At least she has a good friend who will go through it along with her. I say we schedule them on the same day! :)
Tuesday, December 8, 2009
Lots of Pic of Paigey!
I know I post lots of pics of Paige but trust me, I used to post lots of pics of the other two when they were little too! So it's just Paige's turn. LOL Enjoy!
Thanksgiving
We had a wonderful Thanksgiving. We visited with Hal's family and my family all came to visit also. Owen had a feast at his school and they made food to share. They did some dancing and singing. Very cute. Here are a few of the pics from this joyous time.
Wednesday, December 2, 2009
Quick Update
We got some unsettling news today. If you know me, you know I can't handle when things are unsure. I like to plan, plan, plan for everything in my life. We took Paige for her NAM and ENT appts today. At her NAM appt, I mentioned to Dr. V that she has been fussy with the bottle lately. She looked in her mouth and said what I have been saying for a few days, she's teething! Problem is, Dr. V thinks she might have a tooth that is coming in on the top! NOT GOOD! If it ruptures before surgery, they may not fuse her gum line together at all, requiring a bone graph later on! The one thing that I dread most for Paige. The one thing that we thought we wouldn't have to deal with. Unfortantly it looks like we might if it happens to be a tooth. PRAY IT'S NOT!
Then we took Paige to her ENT appt for the follow up for her tubes and scope. They said that her left ear tube is completely clogged and gave us a really strong ear drop for that side. Then, they said that her other side is still draining and to continue drops on that side with a different type of drops. They did NOT retest her hearing and they won't until January 6th now. SO I was hoping we would have an answer today and now it looks like we will have to wait a whole month longer!
I'm kinda upset by all this. Everything was looking so good and now it's just still a waiting game to see if her gums are okay to fuse and to see if her hearing has improved! January is a big month for Paige!
Then we took Paige to her ENT appt for the follow up for her tubes and scope. They said that her left ear tube is completely clogged and gave us a really strong ear drop for that side. Then, they said that her other side is still draining and to continue drops on that side with a different type of drops. They did NOT retest her hearing and they won't until January 6th now. SO I was hoping we would have an answer today and now it looks like we will have to wait a whole month longer!
I'm kinda upset by all this. Everything was looking so good and now it's just still a waiting game to see if her gums are okay to fuse and to see if her hearing has improved! January is a big month for Paige!
Sunday, November 22, 2009
Jump Jump Jumparoo!!
Paige got her XMAS gift early this year. I figured she is already almost 15 pounds and I want her to have a lot of use out of it. So we got her a Baby Einstein jumper. She LOVES it! It's so cute to see her focus on the toys and try to manipulate them! Here are a few pics!
Cleft Update
Paige's cleft is so close to being closed. We are making the steri straps tight and making sure she has all of her visits (not that she has ever missed one!) :) It's looking so great!
