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Wednesday, December 30, 2009

Paige's LAST NAM ADJUSTMENT!

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!

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! :)

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.
video

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!

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!



Sisterly Love

Maddie just loves her baby sister! They are so cute together!


Tuesday, November 17, 2009

Paigey update

Paige is doing really well! She had her NAM adjustment this last Friday and she is over 14 pounds now. Little chunky butt. :) Dr. V told Hal that we need to start making the steri straps tighter as she is almost done with the NAM! She said that the tighter we make it, the closer her cleft will become! Of course, I can't over do it and squish her cheeks like a fish. LOL Dr. V also said that her nose looks awesome and she should have a really wonderful outcome after surgery! I can't wait. Not too much longer and NO NAM! I'm a little scared about her eating without the NAM but I plan to talk to Matt about that at our pre-op appt. I tried yesterday and boy is it different than feeding with her NAM in. I'm just not used to it anymore. But all in all, Paige is doing really good. Her reflux is a little more under control from the surgery when she started to spit up a LOT. But, now it's not as bad.

Talk to you all soon again. Don't forget to comment!

Sunday, November 15, 2009

Proud Mama Moment

There are somethings just make you proud to be a mother! Today is one of those days. Owen and I had the rare opportunity to spend some quality time with just the two of us. So I decided it was time to teach him how to tie his shoe! I have a shoe tying pillow and I showed him 1 time how tie his shoe the "grown up way" without using bunny ears. (I hate bunny ears, I think it's harder to teach as there are too many things for their little fingers to hold). Anyways, I showed him the one time and then walked him through it one time. Then, I set him lose! He did it the very first time by himself!! I was so proud! He's growing up! He practiced a few more times on the pillow and then did it on his shoe! He did awesome! I'm one proud mama!

Tuesday, November 10, 2009

Life in Limbo

I can't stand when things are left unfinished! I am the type of person that when something is started, I can't sleep until it's done. Point in case, this new possible job! I interviewed almost 1 1/2 weeks ago. I finally hear from them today to tell me that they are still trying to contact my references. The problem is, I'm suppose to give Head Start a 30 day notice. So if they hurry up and tell me, the sooner I can get started! Then, my current BSC job calls today to tell me that I'm picking up 2 more kids. YEah for the pay check as it does pay well but boy is it getting hard to schedule around Head Start. I'm there all day long and while BSC and MT is flexible, it's not that flexible with families schedules. So I hate this waiting to see if I got the other job so I can quit Head Start and only work as a BSC or MT. It's getting too difficult with our already busy schedule.

Also, in other news, I have officially stopped breastfeeding. The last day I pumped was almost a week ago (last Tuesday). I finally just figured that it was more important to have a sain mother than to pump 1-2 bottles a day. That's basically all I had time for. I feel awful about it but you have to make a sacrifice some where. She is doing awesome on formula so I'm happy about that. She has been spitting up more than normal since her scope and I plan to talk to her doctor about that but all in all, she's doing great.

Madison is well too. She has been full of fire lately. I came home from work today and I think she talked my ear off. LOL I'm so glad that she is happy being home and not missing being at daycare all that much. They go on Mondays and she looks forward to that but right now, that's all we have to do. Makes for a lot less of a bill. :-) Can't afford that right now.

Owen is doing well. He has started to read. Can you believe it? He's starting to read. It's amazing, He's amazing. He really has done well in Kindergarten. You know me though, the teacher in me wants him to do super great. I have to back off and remind myself that he is doing good.

Hal is almost done with school. I can't wait! It would make my life a lot easier if he had a regular job and didn't have to go to school but I will live. I like having him home with the girls during the day. They have really bonded.

Okay, that's a brief update on us. Please don't forget to comment! I want to hear from everyone!

Saturday, November 7, 2009

Paige's appointments until Surgery!!!!

These are the last of Paige's NAM appointments until Surgery! We only have 7 more NAM adjustments! Can't wait for this to be over and done with the NAM!

November 13: NAM adjustment and Eye Appointment

November 18th: NAM adjustment

November 25th: NAM adjustment

December 2nd: NAM adjustment, ENT follow up with hearing test

December 9th: NAM adjustment

December 17: NAM adjustment and Pre-Op appointment for lip/nose/gum surgery

December 30: LAST NAM adjustment

January 8th: SURGERY!!!!!

Friday, November 6, 2009

ENT Surgery Update

This has been yet another long week. I'll give you the short version

Wednesday, the entire family headed to Pittsburgh for a NAM appointment and to stay the night in a hotel for Paige's ENT surgery on Thursday. The NAM appt went as planned and I even was able to ask Dr. Vechionne if she thought Paige would be ready for surgery in January and she said "more than likely." That's about the most she can say "legally." I was pleased with that.

We then headed to the hotel and went and got dinner. Then Paige got to meet her new friend Liliana. Lily is one month older than Paige and also goes to the same cleft team. They even have the same plastic surgeon. We hung out with Lily's mom, Erica and had some really good conversations about the NAM and other fun stuff. It was really nice to get to know Erica and Lily. It was very sweet to see the girls together and really nice to know someone who understands completely what we are going through. Lily's parents knew about her cleft during pregnancy so we come from a different beginning but have defiantly the same outcomes so far. Lily is scheduled for sugery one week after Paige. Lily gets her nose shunt next week also. We look forward to getting to know them better and seeing the girls grow up to be great pen pals. :) Here are a few pictures of the girls together!






Yesterday, we had to be at the hospital at 6:30am on Thursday. We arrived a few minutes early and everything moved quickly. Paige was not allowed to eat after 2 am so she started to get fussy but was really great all morning. We talk to Dr. Alper and the anestialogist. We also met a nurse who had a cleft lip and palate. He told us his story and how his surgeries went. Paige went into surgery at 8:00am. She was there until 9:45 when we were called back to see her. She didn't even look like herself. She didn't open her eyes and her face was really white. She was screaming! She stopped for a minute when I picked her up but continued to scream then after. I got her to eat 1 ounce of sugar water and then waited for Dr. Alper to give us the results. She was still very upset and they gave her a really strong medication to relieve the pain. She calmed then after but I was unable to put her down. I held her from 9:45 until 4:30 with only putting her down a few minutes to go to the bathroom and to change her diaper. She wanted to be held and by all means, I was holding her!

Dr. Alper came to talk to us and told us that everything went as planned. (Although they told us it would only be a 45 min surgery but ended up being 1 hour and 45 mins). He said that her scope indicated a very mild case of reflux with a little swelling around her larynx. He said it wasn't bad at all. Her laryngo malacia is mild also and really is not a concern as long as the reflux is managed, which it is. We are good with her Zantac and thickening her bottles. He said that her ears were pretty bad. He said both sides were completely full of fluid and it was thick. They put a incision in her ear and inserted the tubes. He said that they sucked out as much as they could but her ears would still drain over the course of the week. She has drops to use for a week and can not get her ears wet at anytime. He did say that with the amount of fluid in her ear, it was a good indication of conductive hearing loss and NOT permament hearing loss. THANK GOD! She will have her hearing retest December 2nd.

At this point, Dr. Alper told us he wanted to keep her overnight for observation. I was NOT happy about this. We had the kids at the hotel with Aunt Jess and we had NO plans of staying another night. I didn't even have my wallet with me or clothes, brush, toothbrush, nothing! At this point, we had no choice but to let Hal pick up the kids and head for home. So at about noon, Hal picked up the kids and left. This was not fun as I hate it when he can't stay. However, Paige and I were fine and hung out in the recovery room until after 4pm. They then moved us to a room on the 6th floor. We did NOT have a private room and this pretty much sucked. Expecially when you share it with parents who really didn't seem to understand much of anything. They kept turning the temperature down to the point where Paige's hand was purple. I was getting annoyed. I will spare you the details but it definitly wasn't a good night and I got little sleep. Paige also was woke up many times because of the situation. So right now, she is sleeping soundly in her bed.

They released us this morning and Hal came to get us. Talk about putting mileage on our vehicles! Paige is doing well now and is in good spirit! She was "talking" to me earlier and is doing really good. I can tell a difference in her hearing already so I really pray that it does the job!

So there's a quick update of what happened over the course of 3 days. I am so happy to be home and allowing Paige a break before her January surgery. I will be requesting a private room for that!

Thanks to everyone who checked up on Paige and her progress! As always, we appreciate the people who take the time to keep up with Paige. Love you all!

Tuesday, October 27, 2009

Nervous Breakdown??

This might be what people call a nervous breakdown! LOL I am finally there. Years of over working myself or over working my brain has finally gotten me to the point where I think I need a vacation. :-)

Things on my mind. WORK! I started a new job! I love my job. I currently still do teach at Head Start but there are many things that I do not enjoy about my job. I LOVE the kids and I love teaching. That's where my heart really is but they quite frankly do not pay me what I'm worth with a masters degree. Sad but true and everyone I work with would agree. So I started a job as a behavioral specialist consultant and mobile therapist. Right now I'm doing a lot of MT hours (not a lot but some) but these all take place after school for most kids. This is so time consuming and hard to accomplish as I work all day at Head Start. So on Friday, I have an interview for another BSC job. This would would be ideal and I could quit my job at Head Start. I have to give HS a 30 day notice which will be hard to do but it would benefit my family a great deal more for me to quit and work only 1 or 2 jobs instead of 3!! I just don't know how I would be able to fit it all in. It would be about a 70 hour a week for a month. That's impossible considering Hal is gone Monday, Tuesday, and Thursday for class and clinicals. I WILL NOT leave my kids in daycare that much. It's not fair to them. So I have a lot of decisions to make. It's difficult as I don't want to screw over Headstart.

Then another topic...BREASTFEEDING! I can not believe I want to say this but I'm so done breastfeeding. Did I mention how many hours I'm working? It's impossible for me to pump as many times at it requires to keep up production. It just isn't working. What's the point of stressing me out more just to give her 1 or maybe 2 bottles a day. Then there is this part of me that says "1-2 bottles is better than none!" I'm so torn on this. I'm a HUGE breastfeeding advocate. I get on my friends who chose not to breastfeed. I totally respect their choice but hope that they at least try it. It's so much better for them. But with Paige not being able to actually breastfeed, I'm draining in all these pumping sessions. 8-12 times a day is the recommended pumping amount. I am (on a good day) pumping only 4 times. I have a life to live and kids to raise. I do NOT have the time to sit around and pump. Wish I did, God knows I wish I did!

So I'm a bit on the stressed side right now. I'm trying to juggle more things than I have the hands for. It's rough! Then there is always Owen's homework, Madison in general, taking care of Paige, NAM appts for Hal and the kids, being home when Hal is at clinicals, scheduling clients. Boy am I tired. So bear with me if I get a little grumpy!

Friday, October 23, 2009

Upcoming Appts

Paige's appt schedule for those who want to know. :)

October 28 2:00 NAM Adjustment at Children's Hospital

November 3 1:00- Pediatric Appt at Meadville

November 4th 11:00- NAM adjustment

November 5th: ENT SURGERY!!

November 13th: NAM ADJUSTMENT, Eye appt

Sunday, October 18, 2009

Who's here??

Sign in here if you are reading my blog! I'm just curious who all is a reader :) Just post a little comment and say hi!

Cry a little with me!

True and honest blog...

Today I was reading on a message board I frequent. A woman wrote that she had a baby born born August 2009 and was still born. She was directed to another forum with other wonderful woman who have dealt with the same. I decided to follow this direction and head over to listen to her story! Sad! I was reading about all these poor woman who during their pregnancy found out that their baby had passed away. Many of them actually had pictures of their sleeping babies. So tiny, so fragile and so innocent. I had to stop and just take a sigh of relief for my little Paige. There are many days when I think "why us!?" Why did we get picked to be her parents. Why did she get picked with this "gift?" I have these days less frequent now but they are still there at times. Then, when I read about these other stories, I stop and humble myself. We are blessed! Paige is a beautiful little girl who smiles every single day. These babies will never give their Mom their first smile! As I sat there reading these stories, I just hugged Paige a little more. She is perfect! She is here with us blessing us each and every day!

I seriously look past the clefts anymore. I remember reading back when she was first born from moms who had cleft babies. They would talk about how they missed their baby's smiles after surgery. That the baby looks so much different and it was a shock. I remember thinking "NO WAY I won't miss that cleft at all!" And you know what, I will. I will miss her big gummy smile. I will miss all those because that is her! That is my precious Paige right now. Will I miss putting in her NAM every day and taking it out at every feeding? NO WAY! But I will miss those cute smiles and chubby cheeks!

So a note of new found wisdom, take a moment today and think about the one thing in your life that saddens you. Really think about it because I guarantee you, there is someone who is dealing with more than you are!

Saturday, October 17, 2009

8 weeks old!

Check out my beautiful baby Paige at 8 weeks old! Isn't she just so sweet!














Tuesday, October 13, 2009

Friendship

Jen- I sit here looking for a friendship poem to show how much I appreciate our endless hours of bitching, crying, and heart warming conversations. But, as you know I'm not a sappy person and all I could find was "glad we are friends" "when we first met" blah blah blah! So here's straight and to the point...

Thank you for the endless years of friendship where we can talk about anything. Tonight was refreshing!

Monday, October 12, 2009

Ode to Paige

PERFECT BEAUTY
by Joanne Green


The Great Sphynx of Egypt has, over the years, Lost her nose.


Venus de Milo has no arms,


And the Liberty Bell sports a great, wide crack.

And yet each of these is considered to be a thing of beauty,


A standard of perfection.


And so it must be that we do not, as one might imagine,


Look to perfection in order to see beauty,


But rather, we look to beauty,


And thereby see perfection.

Sunday, October 11, 2009

7 weeks progress pics!

Just a warning, Paige is usually NOT very happy when I get these pics. It's about the only time she lets me see in her mouth is when she is mad and/or crying! LOL So just pre-warning you now, these are not her best pics. :)

This is Paige's NAM now with the nose stent. It helps to mold her nose. It will be added to each week to make her nose mold prior to surgery.


Paige with her NAM and nose stent now. It doesn't bother her. She has not cared that it's there at all. Actually it keep her nose open so it really does help her to breath better. Before, her nose was flat on that side.


You can see Paige's gum line that has moved a considerable amount. This week has been a really dramatic difference. Her gums are a bit red from the molding but it doesn't bother her at all. It's such a slow process that while we can tell a difference, I doubt she can.



Check out how open her nose is on the right side now. This was all flat prior to this week and the nose stent. Also, you can see how far her gums have moved on the left side. I believe her cleft is only about 6 mm now. When she has her surgery, they will straighten out her nose so that the cavities are the same on both side and symetrical.


Thanks for looking!

Recent Pictures of the crew!

Home soundly from the hospital!

Comfy, cozy Paige!

Hanging out with Paige!


Sun was in our eyes at the Pumpkin fest parade. Just a little mommy and kiddo time!



Mommy and Maddie!




Saturday, October 10, 2009

Paige is home

Thankfully Paige is home from the hospital. After 4 days of being there, she is now sleeping soundly. Her little hand is quite swollen from the IV but she is eating okay and acts pretty well. She has been really tired and sleeping most of the day. I can't wait to get her a bath when she's up and nice and comfy. We are going to try to do our best of not getting sick again but it's really hard. I work with children, Hal works in a hospital, Owen is in Kindergarten, etc. One of us is bound to bring something home at some time. My kids get vitamins every single day, they wash their hands, change their clothes often, take showers, etc. Just seems to still happen.
But, thankfully Paige seems to be doing better.

Friday, October 9, 2009

This is one of those times

where if you don't want to hear me bitch, you might not want to read! Seriously, this could get nasty if I don't watch what I say!

I'm fed up! Seriously fed up. These last few weeks have literally been the weeks from hell! I can't even enjoy my poor baby because she is so sick all the time. And when she's not sick, it's just a matter of time before something else happens. I know first hand that there are many children that are much worse off than she is. I have seen some really SICK children! But, to us, this is devasting! It's really difficult to juggle starting a new job, working my current job, Hal in school, Owen in Kindergarten, Madison in general, spending every week at the hospital, this whole week being at the hospital, working to get subs for when I'm off, not feeling guilty about the time spent with Owen and Madison, and everything else involved in just living. But, then I also have the fact that I am starting to get really fed up with a specific group of individuals in my life. I have some really great family and friends. I have family and friends who would drop what ever they are doing to help us when they can. They are the type of people who know that I have always put my children first and that this is all really difficult for us. They also know that Hal and I never ask anyone for help when it comes to raising our children or caring for them. But, I find it very difficult to handle when we ask for help and all I get are excuses for why it's not possible. It's not like we ask all the time for help. It's not like we are trying to "inconvience" anyone. We did not chose to have a sick baby who requires a lot of our attention. We did not ask for any of this and it's not fair to our children to have to worry about who is caring for them. We should not have to sacrifice their health and well being when this is all happening. I will not just pawn my children off on just anyone. We ask for help and it seems that we just get excuses from people who say they care! Then, there are people who will take off work for us, spend time in hotels rooms for us with the kids, drive 2 hours to watch the kids. But, we can only ask this so many times before we feel like we are using these people. Then, there is this other group of people that all I can do is *sigh* when I think about their uninvolvement in the well being of our children. DO NOT PRETEND like you care and not even call to check up on Paige when she is really sick! She is currently STILL in the hospital and has been for 3 days! Hal is with her tonight as I am drained and really just need to sleep. I'll go back in the morning. Yet, there are some people who will talk to the entire town about Paige but yet not even care to check and see if she is okay. Which she is not! She is better, yes! Her fever is down and she is starting to recoop but this has been tramatic for her. Unless you have checked on Paige or read the blog, responded or just plain showed your caring interets, DO NOT pretend like you give a crap about my baby girl! I'm done with fake people. I'm done sharing my beautiful children with anyone who does not on a regular basis care about these children. I will not waste my time caring anymore about these people. People who truly know me, know that I would bend over backwards for anyone! Expecially when it comes to children. Yet, when we ask for help, it only comes from people who we would least expect. Thank you to these people, you know who you are! We love you!

Thursday, October 8, 2009

Change of plans

Paige did not have her ENT surgery today. The night before last, Paige spiked a 102 fever. I assumed ears as she has difficulty with fluid (or so they say without ever actually looking). So I had hal take her in yesterday to be examined. They said NOT her ears and they didn't know what was the cause. SO they admitted her because she's so young. I'm sorry but unless you have children, it's hard to ever say you can understand how awful it is to see a child go through what Paige has just undergone. I'm only home for an hour and then I'm rushing back in there but I wanted to take a minute to update everyone who is aware of the situation.

A complete list of what Paige has undergone and their results...

Nasal swab- yielded NO flu or other serious illness of this orgin
SPINAL TAP- Yes my poor baby had to have a spinal tap! It was horrible to her hear screaming and not being able to go in and comfort her. Spinal tap yeilded a viral result. So not menegitis (thank GOD!) or other bacterial infection of that kind.
CBC said that her white blood cells were a little low. They repeated today and it was the same. Dr is not too worried about it though.
Blood test resulted in a staf infection. They think it was contaminated.

Currently she is still running a fever so is taking tylenol every 4 hours. She is also getting really high levels of antibiotic in an IV every 6 hours.

She is eating "okay" and is in generally good spirit when she is medicated. She is sleeping a LOT but wants to be held all the time. Mommy has gotten NO sleep in the last 2 nights and probably won't again tonight.

It's pretty horrible seeing my 6 week old so sick. They said she could have gotten it from anywhere. It doesn't help that Owen and Madison are starting to get sick too but not half as bad as a 6 week old would. The dr said it's standard procedure for a young baby as she is.

So anyways, it's been a crappy 2 days and is only getting better. They inticipate that we MIGHT get to go home tomorrow afternoon. I personally am in no hurry except to get this awful looking IV outta my baby girl. She hates it. They also have her hook to a Respitatory monitor, APnea monitor, and O2 monitor to check her stats. It pretty much SUCKS!

Her surgery has been rescheduled to November 4th. I also HAVE a LIP SURGERY DATE of January 8th! I was pretty excited to get that news yesterday! Things are falling into place with that! I'm pretty happy to be 2 months away from being DONE with her NAM!

Thank you to all of you who have called and checked on Paige. Expecially THANK YOU to everyone who has volunteered to help with Owen and Madison. Although it doesn't seem to work out. This is a whole other blog but I'm basically sick and tired of people who claim to want to help but are conventantly unavailable anytime we ask for help. So those of you who have helped or those of you who have offered but it just hasn't worked out...THANK YOU! We appreciate each and everyone who is there for us when we ask!

Tuesday, October 6, 2009

Stressed beyond belief!!

I never thought this day would come. I am officially so stressed out I can't handle it! I'm not usually a stressed person. I ALWAYS find a way for anything I need to do. It just happens. But, this time around, I'm at a loss. Paige has surgery on Thursday. The problem is, I have no idea what time on Thursday. The problem with this is that I will not know what time until tomorrow night, leaving me without knowledge what I'm doing with Madison and Owen. I have Maddie scheduled at daycare and she can be there at 6am if I really need her to be. But, I called and talked to the outpatient surgery and they said it can be as early as 6am. So now what??!!? Who is going to stay with the kids while we are down there. Taking them really isn't an option at this point because siblings are NOT allowed to be in the room at all. So why take them if that restricts one of us from being there with Paige. I know, I know. Someone is probably saying, why doesn't Hal stay with the kids while I go or vice versa. Think about it this way...

My poor 6 week old baby girl is having a mask to put her to sleep, then they insert an IV, possibly a breathing tube and then stick a scope down her throat. And it's not like they can just stick it up her nose and down her throat, her nose is all open to her mouth. So that is even more difficult and uncomfortable for Paige. Then, they will be placing tubes in her ears. Not a huge big deal on the tubes but still under meds for all of this. Then, waiting that scary time hoping that she wakes back up! What parent wants to not be there for all of that? I can't and won't miss that for Paige and for myself. Hal feels the same.

This is really hard as I normally do not trust many people with my children. I know find myself in a position that I'm going to have to trust more people. The problem is, it's hard to come by these days. Many people are too busy, too selfish or just plain too annoying to ask. Then, there are those people that would do anything in the world for us but we are too fearful to ask for their help. You know that simple "hey if you ever need anything" phrase. Well, I never can tell if they are serious or just saying it because they feel bad for us.

I know I'm quite frank on all of this but it's really bugging me to no end. I have NO idea what we are doing for this Thursday, not alone the days we are in the hospital when she is there for lip and palate surgery. And any other possible surgeries she might have.

This is all just really hard!

Monday, October 5, 2009

MIxed emotions

We took Paige to her team cleft meeting today. Here's how it went...

Met with Matt (speech pathologist), Dr. Grunwaldt (plastic surgeon) first.
Dr. Grunwaldt talked to us about her surgery and how things would progress. She said it's a 4.5-5 hour surgery. That she will do her best to make Paige's scar look it's best but that really is up to Paige's body on how she heals. She also said that her cleft is pretty "typical" and that it isn't all that bad. The first thing that Matt said when he came in is "oh I guess we won't have to wait the full 6 months with Paige." That made us have a sigh of relief. And the first thing they asked was when Dr. V said she could probably have her surgery. I told them that she told us 3-4 months. Matt said he would go check and came back and said Paige will have her surgery at 4 months. SO JANUARY! We were hoping before Xmas but the first of Jan sounds good too!! We are looking foward to Jan now!!

Then, the ENT came in to talk to us about her stridor. They all agreed that she sounds so much better! We are still going ahead with the scope Thursday unfortantly. They are not sure about the tubes but are pretty sure they are going to just go ahead with it. They said that if she still does not pass her hearing, she will have a more intense test done. Hopefully she passes!! Mommy is going to start sign language with Paige soon. Good thing her mommy knows quite a bit! And what I don't know, I can find out. I took classes in college, and have friends who are deaf and have taught me a great deal. I could probably spend an entire week just signing and not have a problem. :) We are lucky in my training in this area as I was going to get my masters in deaf education but decided it was too difficult to find a job.

We then met with Regina (nurse practioner). She was impressed with Paige's weight gain! She is now 12 solid pounds! This is a huge milestone for cleft babies who tend to gain weight slowly. Paige has NO difficulties eating! She is in the high 95th percentile for height and weight! We also talked about increasing Paige's zantac to help with recent increase in spitting up.

We met with the social worker who talked to us in more detail about how we were feeling about things and also about health insurance information.

Then, Dr. V took us into her office to do the NAM adjustment and to add the nose shunt! We were excited for this because it really is helping Paige to be able to breath out of her left nostril. She has not been bothered AT ALL by it and could care less. Owen was a little freaked out when he first saw it because he thought it was a "hook" in his sisters nose. I explained that it helps to mold her nose and he was okay but was really freaked out at first.

So all in all, Paige is doing well with the NAM and everything is progressing. I was a little upset this visit though. When Matt and the other doctors were in the room, Matt began to talk about all these conditions my daughter has and he never explained them. So I have no idea what he's talking about. They did make note that Paige has a small chin. This is usually associated with some conditions related to a cleft. She also rolls her tongue so I was worried about Pierre Robin Sequence (
http://www.cleftline.org/publications/pierre_robin) which Paige has many of the symptoms for. But they didn't seem to think it was an issue at this point. This condition is rare and therefore I doubt Paige has it but it definitly is a concern if it is diagnosed. I doubt it though. Many of the things I have read says you do NOT have a cleft lip with this disorder. Matt said that no one has seen a signal of PRS so I'm hoping this is not the case.

Paige had to take her first trip to the Lab too. They had to take 4 vials of blood before her surgery on Thursday to check for blood disorders. I'm close to be anemic and Hal's sister has the carrier for Blood Pole platelet disorder. While I'm told Hal can't be a carrier, it's better safe than sorry in my opinion.

So right now I'm sitting here thinking about all the questions I had and forgot to ask! Like

How are we on the bone graph? Is it likely Paige will still need one or is the NAM working well enough we won't.

Can Paige go swimming with the tubes in her ears?

What happens if Paige's nose is molded and it's NOT January? Can we have the shunt removed or will it always remain?

Just a few questions I wish I had asked. I have Thursday off to go to her surgery but after that Hal will be on NAM duty alone. I will be at work for the next few appointments. I'm praying they have Paige's surgery early on Thursday also because she can NOT eat prior. Not quite sure what I'm going to do about Owen and Madison. Plan on taking them to daycare but boy is that an early day. I feel bad for those two! They love hanging out at daycare, truthfully I get yelled at for not letting them go. But it makes for such a long day. I feel bad because I feel like we are neglecting their needs. I know we are not and this doesn't happen often but I love being able to have Hal take the kids to school and not have them there at 6am.

So as you can tell, I think I have rambled enough. :)

Sunday, October 4, 2009

Paige's progress with the NAM

I really think that the NAM is doing wonderful things for Paige. I'm going to try to add new pictures to show her progress. Please comment and let me know what you think...


At Birth, Lip... Click on the pictures to make them larger if you have a difficult time seeing the difference.

3 weeks old cleft palate and lip





6 weeks old! AMAZING cleft lip and palate!



6 weeks old...Lip.

Tomorrow is a big day!

We have our team meeting with the cleft team in Pittsburgh tomorrow! We are pretty excited because rumor has it, you can pick your surgery date this day. Well, we don't exactly get to pick it, more like they tell us. I'm really excited though. I can't wait to find out! I'll be pretty bummed if they don't tell us but I'm pretty sure they will. Paige is doing really well. She is a happy, smiley little girl. We are impressed with her each and every day!

Saturday, October 3, 2009

Thank you God

Thank you God for knowing what I can handle! Thank you for not telling me prior to Paige's birth!

I have recently met a very sweet woman. She just found out this past week that she is having a BEAUTIFUL baby boy who has a cleft lip/palate. I have been in contact with her frequently and have seen the beautiful pictures of her ultrasound. He really is just adorable!

But as I talk with her, I realize one huge important factor in this whole equation! I'm incredibly thankful that I did NOT know about Paige's cleft prior to birth! It would have helped to know that she was a girl. LOL But, as for the cleft, I think I would have been a wreck the entire pregnancy. At least I got to enjoy being pregnant, possibly for the last time. God knew that I would stress out and be overwhelmed. Possibily he had a master plan, allow me to finish school unstressed and give us a great summer prior to Owen going to Kindergarten. Perhaps that's why God waited so long for her to be born. I never thought I would make it to almost my due date (she was born 3 days short of my due date). I never thought I would have made it that long. All of those contractions that I was having all summer long that were incredibly painful. Maybe God kept saying "she's not ready!" I am thankful that He gave me Paige. I just adore my baby girl! I am so thankful He gave me my beautiful Madison and Owen. And I'm incedibly thankful that He knew what I could and could not handle. Thank you God!

Sunday, September 27, 2009

Big strong baby girl!