I just wanted to put a little thank you on here to everyone who has been sending us well wishes and prayers. You don't know how blessed you truly are with great friends and family until something has happened. We are blessed with Paige and look forward to the end conclusion of all this. We are truly enjoying Paige as she is a really sweet baby! It's so vitally important to remember to take the time to just enjoy this little precious gift from God, just as you would any other children. So thank you to all who have been there for us thus far! :-)
Also...I'm sorry! I know everyone wants me to call them and keep them up to date with progress. But, right now it's so hard for us to do that. That's why I'm blogging so much. It's much easier for us to explain it one time rather than fifty. So while we love all of you, don't get upset if we don't call as much. Please just know that you can call and check up with Paige or read the blog too. Right now, we are trying to focus on what it takes to have 3 kids! I'm tired, Hal has school starting on Monday and Owen starts Kindergarten in less than a week. As you can tell, we are a bit stretched thin. :-) Everyone has always told me that I do too much and am the energizer bunny. Well, these days I definitly would appreciate a day home doing nothing. :-)
Friday, August 28, 2009
Thank you and I'm Sorry....
Thursday, August 27, 2009
On a happy note
Owen went for his kindergarten orientation today. Boy oh boy does he have an interesting class. He is going to be in class with some of the kids that he went to Pre-K with. Bad combination to say the least. I think he will like his teacher though and he was really excited to go. Almost, too excited! :-)
Life with a NAM
is not so fun!! She hates it! She has already pulled it almost out and made the bandages hurt and also has figured out how to push it out with her tongue. Didn't know she would figure that one out in one day. She was fussing and I took her outside. The minute we got outside, she stopped crying. I figured it was because of the sun and going outside. But, no..I look down and she has it completely pushed out and just hanging by the rubber bands on the outside. Silly girl, she apparantly doesn't know it's actually going to help her. She has been eating a little less than she normally does without the NAM. It's almost like it hurts her but I don't know. She has an ulser on the top of her mouth from not having the NAM before and the bottle rubbing on it. The dr said it would go away in a few days and not to worry about it.
Her next doctors appointment is tomorrow with her Pediatrican. That will be a pointless appointment where I will probably know more than they do about cleft at this point. However, her next Children's Hospital appointment is next Tuesday!
Paige and her NAM
This is a really horrible picture as she is basically sleeping on me all squished up. I'll get better pics later...
Paige with her NAM...
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...http://www.drstelnicki.com/2cleft.htm
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 results..it'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!
Tuesday, August 25, 2009
Paige's Appointments
Wednesday, August 26th- Meet with Pittsburgh Children's Hospital. We will meet with the surgeon, pediatrican, speech pathologist, and dentist. She will be fitted for her obturator.
Friday, August 28th- Appointment with Regular Pediatrican
Wednesday, September 9th- Appointment with the Audiologist
Monday, August 24, 2009
Monday, August 24th
Today is my due date! Thank goodness I didn't make it to today!! :) Being pregnant is fun but boy am I glad it's over. I can finally walk again and I can actually get up without feeling like my hips are going to fall off!
Paige is now 3 days old! I can hardly believe I have a 3 day old again. Back when Maddie was born, I really thought we "might" be done having children. We had talked a lot about it and now here is Paige. She is currently sleeping on my chest! 3 days old and she has already proven to be a great sleeper. She went to bed around 11 and got up twice until 7:00am. Not too bad for being 3 days old! I can handle that if it continues, something tells me we won't be that lucky. LOL
Paige also has her first appt with the surgeon, pediatrican, dentist, and speech pathologist on Wednesday at 9:30. She will meet with them all and she will be fitted with an obturator that sits in the roof of her mouth. It will serve to help move her palate together to make it more successful in the future. They said that she will have that for a couple of months and then will be able to have the lip surgery. We are not sure of a timeline yet but will find out more when we go on Wednesday. She will either get the obturator on Wed or Thur.
Wish us luck and keep praying!
Sunday, August 23, 2009
Meet Paige Alivia!
Yes..Paige...NOT PARKER! I'm home now after a very LONG weekend. I got the surprise of my life this week. Here's a bit of the story....
On Thursday, I was really excited because there was a storm coming into town. I figured it would be great pressure drop and my water would break. The storm ended at 10:00pm and my water broke at 10:30pm. I was a bit shocked when I sat up in my bed watching Tv and all of a sudden...gush! I told Hal "uh Honey, my water just broke!" He asked the obvious question, "are you sure you didn't just pee yourself???" I went to the bathroom for a following GUSH!! I called my BIL and he came to watch the sleeping kids as my sister drove up to spend the night and weekend with them. I called L and D and we headed in.
When we arrived at L and D, I was met with a new doctor I had never met before. We discussed options of pitocin and such and he checked me. I was still only 2cm and NOT having any contractions at this point. Go figure considering all the contractions I had prior. The baby's head was still NOT engaged. So pitocin was started and all was progressing as nature. At about 7 hours into it, I opted for some much needed rest with Nubane. THey luckily gave me a double dose and I was able to sleep for about an hour or so. IT wore off in 2 hours (amazing!!) and I asked for more. BAD IDEA! It made me sick and didn't help at all! I could barely open my eyes as the room was spinning and my heart was beating really fast. Hal was awesome as always during delivery. He sat behind me at this point and held me up duing every contrax. He was my rock! I told the nurse that I felt a lot of pressure, she checked me...8 and still NOT engaged! COME ON BABY!! After about half an hour, I felt sooooooooo much pressure and it was killing me. I told the nusre, the baby was coming NOW! She said I was only 8 cm and to wait. I said NO, get the dr...baby is coming! Anyways, they ran aroundl like crazy people at 10:00 to get the room ready and stirups in place. I pushed the baby out in 5 minutes! When SHE came out..we didn't know she was a SHE. We were still thinking it was little Parker. The doctor instantly told me "oh honey, he has a cleft lip, did you know that?" Instantly I started crying and was emotional. Hal was amazing again telling me that he was beautiful and perfect and we would be okay. Then in the same minute, the doctor says "oh honey..this is a girl, I'm sorry, this is a girl!" I looked to Hal and I told him "are you okay?" He said "she's perfect, I'm okay. It's okay" The time following that is not a blur but in my mind, I was in shock! Two big surprises all at one time! All this information has to be wrong. This is NOT my baby! I have a baby boy named Parker and he's perfect. But, as I watched this SCREAMING baby, I knew she was mine. She weighed 8 pounds and 15 ounces and was 22 inches long. Lots of black hair, hense the heartburn. She was and IS perfect.
Paige Alivia is perfect. I focus on the perfect in her. She has a cleft lip and cleft palate. She is amazing though! She is a perfect sleeper and she eats really well. Generally children with cleft anything have a difficult time breastfeeding. This is our first challenge as it is vitally important to me and to her development that she is breastfed! I am proud to say that with lots of work and an extra night stay in the hospital where we could focus on this, Paige has been able to latch on quite a few times. She is not getting a whole lot at this point as my milk supply is just coming in. But, she is doing wonderful! She will NEVER be able to fully receive breastmilk until she is much older if ever. But, in order for her to receive her surgeries, she must be healthy. Breastfeeding is one of those ways I WILL get her there!
As for surgery, I am optimistic. I am a God fearing woman and know that He will help her through whatever obstacle she has to face. We will be going to Pittsburgh Children’s Hospital in a few weeks or days to get her fully evaluated. She will then be fitted with a plate that will sit in the roof of her mouth. This will then serve as a barrier until she is older and can that surgery completed. At about 2 to 6 months old, she will have her lip fixed. After which, the palate will then be finished. Dental work will be done when these are completed. I pray, as I hope you all will, that these are successful and she is not scarred by any of this! She is already beautiful and this will just show the world how beautiful she truly is!
As for Paige, she is very sweet. She is laying on me sleeping and snoring as I type this. She is a great sleeper and a little piggy. She is eating well from special bottles that help her to latch correctly. She only lost 5 ounces during our 2 day stay in the hospital which is A HUGE success for cleft lip/palate patients, who can lose quite a bit. But, we are strong woman and will pull through this! Nothing is too difficult for us!
The kids adore Paige. They were a bit confused on why we are now buying pink instead of blue. But, Maddie keeps telling me how “cutie” her sister is. Owen gives her a MILLION kisses and is extremely worried when she cries.
As for Hal and I…we are in a bit of shock. This is a little hard to handle as I am sure everyone can understand. We love our daughter but it’s almost like we are mourning the son we didn’t have. Paige is perfect in my eyes. I am just now starting to realize what all this means for having 2 little girls. I can dress them alike, they can take dance class together, I can spoil the crap outta my only boy! All these things are so fun to think about, just different from the way we have thought for the last year, thinking of little Parker.
So right now, I ask you all to just say a little (or long) prayer for my precious baby girl! We love her and she fits with us!
