Saturday, September 26, 2009

Paige is so much better!

The Zantac and thickening her formula/breastmilk is really helping. She is breathing so much better and has been a lot easier of a baby. She's not cranky and sleeping really well again. She has just been smiling away the last couple of days. She's not completely back to eating what she was before but that's okay seeing how it's thicker and makes her fuller.

We do not have a NAM adjustment until the 5th of October so nothing will be really updated until then with the doctors. We should get a surgery date that day though! Very exciting!

Here's a couple of pics for your enjoyment...

Thursday, September 24, 2009

Going back to work

This really sucks! I go today to get released to go back to work TOMORROW! I'm not to keen on this. I stayed home with Owen till he was 9 months old and Madison was almost 4 months. So to be going back to work when my baby is 5 WEEKS old is basically killing me. The ONLY reason I know I can do it is because she will be home with Hal all day. Most days I'm home by 1:00 so that helps too. He keeps telling me it will be good for me to go to work but I really don't know how good it can be to already be stressed out and then go to work and deal with 18 more kids! I'm only going back because #1 We need me to finanically. Hal is still off work and we are not going to make it much longer with me being off. Even then it's a struggle with all these newly accured expenses. #2. By going back earlier, I can use more time to take off for Paige's appts and surgeries. I'm not taking off for NAM adjustments as those are literally a 15 minute appt but I will DEFINITLY be there for any other appts.

So this is my last day home. :( I'm going to go hang out with Owen at school for a little while, head to Dr. F (OBGYN) and then hang out with the kids the rest of the night. And then relax enjoying Grey's Anatomy tonight, that's if I don't fall asleep first. LOL

As for Paige, she slept REALLY great last night. 6 hours, woke up for 45 minutes and then slept another 4.5 hours. So I think the cereal in her bottle is helping. She barely spit up at all when I fed her.

Hope everyone is well. I am looking forward to going back to the land of the adults but it's painful to be leaving my babies.

Wednesday, September 23, 2009

Pagie's upcoming appts

October 5th- Teem meeting and NAM adjustment. Meet with the entire cleft team. Hopefully receiving the date of her first surgery! YEA!

October 8th- ENT surgery for endoscopy and ear tubes inserted.

October 15th- NAM adjustment

October 22nd- NAM adjustment

October 28th- NAM adjustment

November 3rd- Pediatric appt with 2 month shots

November 4th- NAM adjustment

Scary couple of days!

I'm going to try to make a long story a little shorter than I would normally tell it. LOL

Paige was born with Laryngo malachia. Basically it is a "floppy airway." It is also known as stridor. It causes Paige to be very squeeky when she is breathing and causes her to sound like she is breathing very hard because it is a tightening of the airways. I basically call it "baby asthma" but it doesn't go away throughout the day as asthma would. It is always with her and she can be heard easily without a stethoscope. When she is sleeping, she is peaceful and you can not hear her breathing like this. Paige does sleep with her crib at a 30 degree angle so that helps her to not breath so loud and keeps the air way open.

Well, yesterday she was not acting right. She is usually really easy to take care of but for the past couple of days she was cranky and not wanting to eat. We just started her on Zantac last week for reflux and so we assumed that it was not her reflux and was simply that she might be getting a cold. So I watched her all day until she was sleeping in her bouncer and just couldn't sleep. She was really restless and kept waking up crying. She never does this. I figured she wanted to eat but she refused most of the day to eat more than 1 1/2-2 ounces of formula/breastmilk. This started to worry me. I asked Hal to come and take a look at her breathing as she was clearly breathing REALLY hard when she was trying to sleep. Which I mentioned, she never does. He looked at her, got out his stethoscope (it's good to have that handy) and told me to call the doctor, she needed to be seen soon. I knew what this meant so I called her ped and asked if I should bring her in or take her to the ER. With all her medical conditions, I would rather a doctor see her that is familiar with her or our family, so I opted to take her to her Ped in Meadville.

So I headed in with just Paige and had her seen. The doctor listen to her and told me that he believed she aspirated. OMG! I was trying not to flip out but just to give you an idea of meant...hospitalization, spinal tap, IV antibiotics, chest x rays, etc. Not a good thing at all. Oh and plus, if you don't get it out in time, she could die. So I was doing my best to hold it together as we always know that she can easily aspirate with her condition. So they sent me to the XRAY dept for chest x rays. At this point, Hal had to bring Maddie to the hospital with me because he HAD to go to clinical rotations. He is not allowed to miss and he might already miss a day for her surgery. So here I am, a wreck already, with a cranky baby and crazy three year old. I held it together and just did what I had to do sitting and waiting for the results.

Results came about 2 hours later. It was such a long and tiresome wait with Maddie all over the place. It's hard for a 3 year old to sit still that long when there is nothing to do. The good news was...she DID NOT aspirate. However, the doctor believe it was an obstruction in her throat or larynx. As I have mentioned before, I instantly thought "cleft larynx." He then told me that he wanted to show me her x rays. This scared me. Her lungs were completely clear but because she is having such difficulty breathing, her lungs are actually starting to grow in a "pear shape." She is using the muscles on the sides of her rib cage to breath, causing them to grow out of shape. Is it reversable, apparantly YES but we have to wait and see. The doctor recommended that we take her to Children's to be evaluated by her ENT today. We already had a NAM adjustment scheduled so I called Matt early this morning and set up the ENT appt.

We got to Children's after dropping Maddie off at daycare and Owen at school. Regina (nurse practioner) listened to Paige and told us she is having a lot of problems breathing and that they were not going to be a NAM adjustment this week. We honestly were a little disappointed as she was suppose to get her nose shunt this week. :( But we agreed it might be a better idea not to do it until we had more answers.

ENT appt: Dr. Alper saw Paige and told us that she didn't sound much worse to him but that he thinks that her reflux is really bad. Her Zantac hasn't really started to work. What is happening is that the stomach content is rising in her throat, irrating it, and then causing her throat to swell more. On top of the Laryngo malachia, she is having some trouble. But he wasn't too worried about it as long as she didn't start to turn blue. He said we need to thicken her feedings and see if that helps her from having the reflux. We are then going to be doing the scope on October 8th with her tubes as planned.

So plan is to thicken feedings, continue Zantac, keep scope operation scheduled with tubes, and watch for increased problems. If it gets worse again, they will take us in to get the scope done earlier. Hoping that is not the case and we can just make it till the scheduled date.

Thanks for all who took the time to pray for Paige today. It was very frightening to watch my one month old having extremely hard time breathing. She is sleeping sound now and doing much better. Pray it continues.

Tuesday, September 22, 2009

Please Pray for Paige

I really don't want to go into details right now as I'm pretty torn up but please pray for Paige. She had an unexpected visit to the hospital today and it yielded some unexpected results. Poor Paige is pretty sick right now. Please pray for her. We are off to Pittsburgh tomorrow to get more results!

Monday, September 21, 2009

New Pictures to Share

Learning to play with her Floor mat! Good stuff!

Owen taking care of Paige

Just too sweet!

Sleeping Paige!

Paige's first smile. Well kinda, she just "finished" smiling and Mommy wasn't fast enough!

Sleeping in her seat!

Daddy, Paige and Madison!

See how cuddly she is! Sleeping on Mommy for 2 hours!

Madison and her Prince Owen

Do you ever wonder if God is just challenging you?

I almost think that God seriously did give Paige to me on purpose. I love my daughter! I already feel a really strong bond with this little being! She is a sweet baby and so cuddly. Maddie was never cuddly. She wanted to be put down and was very independent from the start. Owen was OVER cuddly because he was so colicky that it was tiresome to hold him. Paige, she is just sweet. She curls her little legs up and lays her hands out on your and you just melt at her sweetness. But these days I almost wonder if I'm being challlenge Paige in my life. I have never thought of raising a baby as difficult. Seriously! I haven't. I find raising an infant far easier than raising a toddler or older. I don't always mind getting up in the night, I don't mind a screaming baby, or changing diapers, stopping to feed in the middle of the grocery story. I have never minded any of that. I always stimulate my babies with enough tummy time, music, interactions, mouth exercises, etc. I know how to take care of a baby, it's instinct for me. But, Paige...dear Paige. She is my challenge. Just when I thought it was easy to have a newborn, she brings me more challenges.

1. Paigey pooh has reflux! Owen had it too but it's a little different when you have a baby with a NAM. Any time she spits up, out comes the NAM to get washed. Plus the fact that her poor little nose is caved in so when she spits up, it almost always comes out her nose. Then she gets really mad because she can't breathe any better with breastmilk or formula in the inside of her nose. So here come the qtips or wash clothes. Also, she will get Zantax twice a day until she's much older.

2. Paige has thrush. None of my kids have had it but apparantly she got it. I can only assume it's because of all the germs from her NAM and the fact that her mouth gets played with by others more than any other kid. So she has meds 4 times a day and it just doesn't seem to want to go away. I'm even taking meds for it in the hopes that I don't have it to give to her through breastfeeding.

3. Cradle cap. Paige has cradle cap. None of my kids had this either but apparantly Paige does. It's not too bad at all and I just have been using a brush to get it out of her hair and applying lotion to the brush afterward and brushing that into her scalp. But, it's just another thing that I have yet to experience that Paige has brought to the table. Of course, none of this is Paige's fault and I don't mind it but it's just one more thing that I am learning!

I don't mind learning all these things. It's a challenge to me really. Everyone who truly knows me, knows that I'm pretty ambusious. When I set my mind to something, I always do it. Case in point, finishing my masters degree when working full time, Hal going to school full time, raising two children, etc. It was difficult and now it's complete! Yeah me! So having Paige actually is no surprise to me. It's just shows that I needed another challenge or purpose in life.

In recent weeks, I have been thinking about my purpose in life. I have gone to school for 6 years to be a teacher. I have a masters degree in Special Education, undergrad degree in Elementary Education and a certificate in Behavioral Specialist. And yet, some days, I find that I don't want to use any of it. I almost feel like I have another calling in life. I haven't determined yet what it is but I almost think God gave me Paige so I would figure it out. She is my angel baby! Truly my angel! I have also been thinking of a way that I can use my talents to put on a fund raiser for cleft affected babies. There are so many children that are affected with a cleft and can not afford to have the surgeries. Overseas, it costs 250 dollars for ONE CHILD to have a surgery. Doctors donate their time and money to perform these surgeries. The 250 dollars goes towards supplies and recovery. I would LOVE to organize a fund raiser to help these children! More will come soon with all of this as I am still sorting out my ideas! I would love to raise enough for 4 children to have the surgery (1000 dollars). If you have any ideas, feel free to leave me a comment!

On a happier note...Paigey pooh had her first smile. Hal told me she smiled the other day at him and I told him it was gas. :) Then she did it with me and I assumed the same thing. Until yesterday when I was playing with her chin and making sounds and she was just smiling away. I tried to capture a picture with no luck! :) But she is getting so big! She lights up our lives!