Happy Thanksgiving

I had my first Thanksgiving today and I have tons to be thankful for. I am thankful to continue my recoveryat home surrounded by such a loving family. This holiday sure is surround with lots of food and I was jealous that I didn't get any of it. I started off sitting in my swing in the dining room but soon dad pulled me into his lap. (I am getting him trained. All it took was a little bit of noise and I was in his lap ;0)

I spent some time on my boppy was lifting my head (tried to do it slow enough for mommy to get a picture) and actually scooted out after my trustie binkie. . . . . (I have done this twice now.)

Mommy thinks I am so adorable that she just can't stop taking pictures and my Uncle David kept yelling at my mommy to stop. But I like getting my picture taken.

I had a check up back at Children's (I hate getting into my car seat!) and even though I looked adorable in my hat, they still let me come back home. Whew. . .mommy and daddy were worried. My doctor said I was looking good. I had some blood work done and I didn't even cry and it was rewarded with a passing grade. Everything looked great!

My Tube Came Out

When I was visiting my grandparents this last weekend, in the transfer of arms, my tube was pulled out. Here are a few picutes without my tube, mommy putting in my tube and they money grandpa gave me to say he was sorry. . . .

Busy Weekend

I had a busy weekend. . . .and saw lots of new and exciting people and places.

Saturday I went to my Daddy's family Thanksgiving. I didn't like getting in the car; Mommy and Daddy had to put socks on my hands so that I wouldn't pull out my tube because I was screaming and flailing my arms around. Once I settled down, I was wide eyed and interested in all the new things I was seeing. I couldn't close my eyes on the way up to Mount Vernon or on the way home. Then I went to my Grandma and Grandpa Wejrowski's. I was so exhausted because there was so many exciting things to look at that I slept through the entire night without my binkie. Which makes mommy happy. I enjoyed being at Grandma and Grandpa's when I woke up, I was full of smiles.

Mommy says I am getting really spoiled. Because I do not want to sleep in my bed, Pack & Play, Swing, Chair etc. I will settle down with my binkie, but get mad when I spit it out and instantly wake up (which is about every 5 to 10 minutes). I also sleep very restlessly and make lots of noises. But as soon as mommy or daddy pick me up, I quiet down and fall into a peaceful sleep. Mommy hasn't been getting very much sleep lately.

I had another appointment with my pediatritian this week and I put on more weight and grew. I now weigh 8 pounds 11 ounces and am 21 1/2 inches long. I am still really small in comparison to others my age. I guess I am only in the 1% tile.

Doing Great

So, we are quickly closing in on being home for a week. Things are going well. We are trying to get into a routine. Alyssa is doing well with sleeping through the night. It is such a relief being home.

We have not ventured out of the house, but we might this weekend if things continue going well. It is difficult to get around and be away from the house because of all of Alyssa's medications. She is getting something almost every other hour.

Alyssa is so curious and is always looking around. I think she is still confused on where she is and her surroundings. Hopefully she will get use to them and feel comfortable soon.

Here is a picture of Alyssa hanging out with Daddy and her trusty binkie at the kitchen table. Snug as a Bug in a Rug on the boppy. . .

Pictures. . . .

Here are some new pictures. . . .

- Me Arriving Home
- The Blanket Mommy Cross Stitched for me
- My first outing to the Pediatricians office

We're Home!!

Woo. . . .I AM FINALLY HOME. . . . . . .

The doctor's let me leave the hospital on Saturday afternoon. I was getting really nervous about going home. I have never been there before. Everyone says that I will like it so much better, but I got scared and threw up. (or it could have been from the anesthesia from my MRI) Mommy and Daddy got really nervous that the doctor's weren't going to let us go home. But they said that I will throw up and as long as I didn't do it again in the next 4 hours, they would still let me go home. Mommy and Daddy were relieved. Mommy and Daddy said I did pretty good on the car ride home. As long as I have my trusty binkie I am able to handle all these new experiences. I didn't fall asleep because there was so much to look at. I was very anxious and kept spitting out my binkie.

I have been home for over 24 hours and have only had 3 itty bitty "urps" nothing to even blink at. . . . . Mommy and Daddy say it is so much easier being at home and they are much more relaxed. Daddy says he dosen't want to go to work tomorrow. He would much rather stay home and hang out with us.

I have slept a little in my own bed. It is much more comfortable then the hospital bed. There are so many interesting things to look at here. Much more exciting and quiet at home then at the hospital. I miss my friends at the hospital, but I don't miss the mean people taking my blood and being poked. I don't have to go back for a couple of weeks.

I meet my pediatrician tomorrow. Hopefully she is a nice doctor that won't poke me too much.

Mommy and Daddy are getting really good at measuring and giving me all my medicines. They also are getting quicker at filling my bag and not wasting the formula.

I will write more later and update with new pictures.

Checking Things Off

What a busy day. . . . .

We are getting things checked off our release form. . . .

(1) Today I finished getting my 2 month immunizations.

(2) I passed my 1 1/2 hour car seat test

(3) Mommy got my backpack pump training

Less then 2 days until I go home. . . . .

Here are some pictures of my backpack pump and me in my car seat.

Advanced to 31. . . .????

I was a little scared yesterday because Alyssa threw up once and was spitting up quite a bit yesterday. But I really think it was because of gas. Because once I picked her up she would burp and we had stopped giving her the antigas medicine. So, she is back on it.

Alyssa was advanced to 31 today. . . . .yes, odd, since that was not in the plan and now she will be above and beyond the feedings needed for her weight. The doctor's reasoning is because Alyssa will be getting an MRI tomorrow and needs stop eating because they need to sedate her. So, they want to get ahead in her feedings.

The plan is to go home Saturday now. Since the MRI is in the afternoon and she will be groggy from being sedated.

We are getting very excited!!! Here is a picture of Alyssa bound and determined to get her binkie. She has gotten very close, but she isn't quite there yet. . . . . Kind of a rough day yesterday, so hanging out on the bed where mommy and daddy sleep.

Today We Reach Goal

Alyssa was advanced to 30 today, which is her goal. I just spoke with her doctor and he said we should be going home Friday or Saturday!!!

I am going to get pump training today and I think we are doing her car seat test too.

I put in her tube again. This time she resisted, so that was a good experience. It took a couple of times, but I got it in. The trick is that she needs to be sucking on her binkie!!

Well let you know more later!!! Exciting times!!!

29. . . . . .

Alyssa was advanced to 29 today. She continues to do well. We had one little throw up incident today, but we are not too worried because as soon as I picked her up and patted her back a little, she burped. So, I think she just had air bubbles that were irritating her.

Yesterday, I put in the feeding tube. It wasn't too bad. Alyssa didn't fuss when we were doing it. We just need to teach her how to quite grabbing it. . . .

We didn't get our discharge date. They haven't decided if she needs to do well two or three days before they will let her go. I am getting really good at giving her medicines through the tube. Hopefully we will get Alyssa's backpack soon and start learning how to use that and get another step closer home.

We took a walk around the hospital today and Alyssa slept the entire time. . .so much for exposing her to different things. :0)

28 & Closer

Today I was advanced to 28 cc's. I keep creeping closer and closer to my goal.

The doctor on rounds today said that they should have a going home date by tomorrow. WooHoo. . . . . . as long as everything keeps going well. I need to keep gaining weight once I reach my goal feed.

Daddy learned how to place my feeding tube this weekend and did it easily on his own with the nurse guiding him through it. Next is mommy's turn. They both have been practicing giving my medicine through my tube.

I have to sit in my car seat for 1 1/2 hours with monitors on me before I leave too.

Here's a picture of me and mommy sleeping. . . .

Take care and keep sending happy thoughts. . . .

Love,

Alyssa

25 & Only the Feeding Tube

I was advanced to 25 cc's today. Which is very exciting news. Mommy and Daddy are so excited that we are getting closer to my goal. I lost a little bit of weight since I am no longer on any IV's or PICC lines, but my doctor isn't concerned. I made it through another night without throwing up. I also slept through the night, but in my swing, not the crib. Mommy and Daddy think that I don't like my crib because I am uncomfortable in my reflux wedge and it is a place I associate with everyone poking and bothering me. But little do they know it is just because I want to be closer to them. . . . :0) I am getting THEM TRAINED. Plus now that I only have my feeding tube, I am able to leave the room easier and mommy and daddy can pick me up easier.

My doctor has started talking/thinking about discharge. . . . . . . I think they are going to order my backpack pump and mommy and daddy are going to start learning how to insert my feeding tube. The doctor said he is confident that mommy and daddy are smart enough to transition my continuous feedings to bottle feedings at home. Which I am glad that someone thinks they are smart. When I try to tell them stuff, they seem to take forever to figure it out. I mean come on, do they "not understand the words that are coming out of my mouth". But, I'll keep them, they don't seem too bad.

That's all for today. Here is a picture of my daddy trying to get me to sit like he does.

Bye, Bye

Love,

Alyssa

24- Getting Closer

Alyssa was advanced to 24 cc's today and is no longer on an IV. We hope that her electolytes and input and output stay in alignment so we do not have to go back on the IV. This morning the electrolytes looked good. Alyssa did not throw up last night. So hopefully the increased amount of reflux medicine helped her out. The only problem is now that she is off the IV, they are only giving her the medicine once a day and orally. Let's keep our fingers crossed that the changes we are making don't effect her too much. We plan on continuing to take it even slower the last bit. It will add a few days on, but we should still be home for Thanksgiving and I would much rather take it slower now, then have to start over.

Take care,
Alyssa, Kim & NJ

Holding @ 23

Alyssa continues to throw up at least once a night. It has consistently been around 3 or 4 am. Which to us seems pretty odd. NJ and I decided we would like to keep her at 23 cc's an hour for another day and not push our luck too much. We figured one more day for her to get use to this volume couldn't hurt. Alyssa's Doctor agreed with us. He is worried that we may be pushing her too fast. He isn't too concerned with her throwing up. We are going to adjust her reflux medicine to see if that is why she is throwing up during the night. He is thinking that it could be wearing off and just needs some adjustment.

Continue sending happy thoughts and prayers. We are getting closer and our goal is to be home by Thanksgiving.

Take care,
Alyssa, NJ and Kim

SMILE

Alyssa's 1st Documented Smile. . . . .

22 & A PICC Line Break

So, we are advanced to 22, which is great news. Alyssa has been tolerating her feeds wonderfully! Let's keep our fingers that we continue the creap upward and onward.

Bad/Good News is that her PICC line had a crack in it and was leaking. So they removed the PICC line which is good news, but is a few days earlier then we all want. So now we hope that her electrolights do not go hay wire again. They have put her on an IV with extra fluids to help with the electrolight levels since she is not at her goal feeds yet. Let's hope that Alyssa's body can figure it out and not let things get out of control again. They don't seem to overly worried because they are not going to start drawing blood every day. So that is good news.

20

We were advanced to 20 today. Let's keep our fingers crossed.