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.

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!

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!

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!

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. :)

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!