Thursday, July 30, 2009

You Are INVITED!

You know those few friends in your life that you just know are going to be there forever. Lifelong friends. I was able to spend 4 fabulous days in Florida with 4 of these friends, (say that 3 times in a row). I don't remember if we were sitting on the beach, or talking in the hotel room, or eating at ihop, but these 4 fabulous friends in Florida thought it would be fun to have a baby shower for me. The only problem, One lives on the east coast, one as far away in Canada as you can get, one way up North, and one about 2 hours away from me. Not the easiest scenario for a baby shower. However Kelly, who is like Martha Stewart, but so much cooler thought up the idea of a blog baby shower. So YOU are all invited to my baby shower!!!!

All you have to do is go to this link http://pruittbabyshower.blogspot.com/ , and follow the directions, use a little imagination, you know, pretend we are all sitting around in my living room, eating cookies, smelling candy bar in diapers, and guessing how big around I am. Actually lets not guess that..................

I hope you can all attend, and thanks to my girls, my life long friends for thinking of me and baby 4!

Tuesday, July 28, 2009

Sitting around on our BUMS!

That's right, we sat around!!!! He sits!!!!! Not for long, but he doesn't cry when he sits! This gives me five minutes to do a chore here and there. Or go to the bathroom without listening to him scream. We did lots of cuddling............
Even some cruising...............


LOTS of cuddling...................


More sitting!!!!




But the best part was a lot less tears, and a LOT more of these!!!!




I have a WONDERFUL Nikon camera, but lately I have been using my phone to take pictures, its so much faster putting them on the blog. Its pure laziness, so I apologize, but as long as we are just sitting around on our bums I figure the laziness fits.



Monday, July 27, 2009

One week out

I don't ever want to do this again. So what if Alex still has a PDA, so what if his thumbs are angulated, so what if he may need his tonsils and adenoids out when he is older. I don't ever want to have another surgery again..................(SIGH) The bruising and swelling was very bad on Wednesday and Thursday, not to mention the circumcision area, it looked like ground beef. The bruising went from dark purple, to yellow and green, to just a little swollen on Sunday. The circ area looks much better as well. A circumcision in a newborn is WAY different than a circ in an older child. There are more blood vessels, and it just doesn't look as simple as it does in a newborn.
On Friday Alex began to crawl around in a brave attempt to explore his world again, but he couldn't sit or stand, so he would cry from the pain, and plain frustration of not being able to play. Saturday was a lot of the same, he would be on the floor for a few minutes then just cry, so we would return to our recliner, and rock. Most of our weekend was spent there. Sunday Alex did a lot more crawling, and would stand up, but then start crying, but at least he was able to stand. So each day brings a bit of improvement, but its very slow going. The nurse told me most kids are back to normal within a few days, as we all know Alex isn't most kids, he takes his time, and will sit and stand when he is good and ready. We took him off of Motrin completely, and only give him Tylenol at night because he was throwing up on a daily basis. I couldn't think of any other reason, but being on a constant Motrin Tylenol routine for his tummy to be so upset. Sunday was the first day we had no throw up. I can only guess I was right.
These pictures show how Alex will play with his toys, he wont sit, but doesnt always want to lay on his back so he tripods.
Maybe today we will sit????
So sorry I have been absent, especially from the blogs I frequent. I hardly have time to go to the bathroom, shower, or eat, so I just havent been able to sit at the computer. I cant wait to catch up with all of you!

Thursday, July 23, 2009

Day 3 (the worst day yet)

So Tuesday wasnt so bad, Alex was in pain, but had many more moments of happiness than he did yesterday.
I could hardly put him down, so if I needed to get something to help him, or feed him, or change his diaper it was with one hand. Right now hip holding is a BIG no no, so one handed tasks are hard, especially while I have all this extra in my belly. This is hard to do alone. In fact I hate it. Yesterday Alex wouldn't even sit on his bottom, I did actually manage to get him to crawl, but getting into the position and out of the position made him scream. He threw up after his first feed for reasons unknown to me, he was in so much pain that I just had to sit there with him, he and I both sitting in vomit, vomit on the floor. It was the worst day yet.
Today wont be much better. We have to drive to St. Louis (1 hour 45 min one way), just to have the bandages taken off. Most of the time circumcision care means changing gauze, and lots of antibiotic cream, but our Dr. Pee puts on a special bandage that I do not mess with, and will be taken off tomorrow. They said to give him Tylenol with codeine 30 minutes out, so I'm expecting a horrific appt. Not to mention the 1 hour 45 min drive back home.
We are then supposed to go back on Aug 14 for post op, August 25 for ENT and cardiology, and oh yeah, I'm pregnant.

Wednesday, July 22, 2009

Day two (recovery begins)

After waking up two times to vomit Monday night, Alex woke up, and was more playful than I thought. He would play with whatever toy was near him, made two attempts to crawl, but was unable to stand up or squat down without screaming, and needing help. When I would lay him down for a diaper change, he would just lay there when I was done. Not even trying to get up on his own. Poor baby. I got a few smiles, and even the classic tripod position ( I think he was trying to look and see what happened to him in his diaper area), but I can tell we have a long way to go. Hopefully the 4 hour nap he took on Tuesday was his first attempt at really recovering.

I also got a game of peek a boo out of him.....I know my Alex is in there!

Tuesday, July 21, 2009

Surgery day

These before shots make me sad. He was so sweet that morning, so smiley. Here he was just waiting to be taken back. Look at those legs peeking out of that gown......................











Adams morning drink, in honor of Alex's big day...................





This is how our time at home was spent on Monday. He was hysterical, wanted to sleep, but the codeine made him jittery and upset his stomach. He was in so much pain. The doctor said his boy parts looked like someone had hit them with a hammer.................


If it hadnt been for the feeding tube, we would not be at home. Today, I love the g-tube.

all these were taken with my phone.......
Day two still to come.




Monday, July 20, 2009

We are home

We are home. The surgery went well. Alex did just fine with the anesthesia. Both testes were brought down, two hernias were fixed, and his blocked tear duct was probed. The right teste is in place and has a great blood supply. The doctor had to cut one of the two blood supplies to the left teste, but was able to bring it down, and it still has blood supply. He said there is a 25% chance of him losing that one, but one is all you need!
Alex is in a LOT of pain tonight. I wont be posting again until little man gives me more than 2 minutes to go to the bathroom. Lots of cuddling today, lots of codeine too. Sometimes I wonder if its working.
I took some pictures, and will post them as soon as I am able.
We go back to doctor on Thursday to remove the bandages on his circumcision. OUCH! Honestly, it might be the worst part of all.

Pictures coming as soon as I can sit here longer.

Sunday, July 19, 2009

Im his mamma


That was me.

I watched for three long hours as they put a picc line in Alex my new born baby, 5 different tries, LOTS of blood, and finally success in his neck.

I watched the doctor tilt his head back, open his mouth, and stick a tube into his airway so he could breath.

I saw countless blood draws for blood gasses.

I watched him cry while intubated, no sound could come out, but tears came out of his eyes.

I watched him struggle to breath, able to count every rib in his side because he was trying so hard to get the air he needed.

I watched him lay there for two weeks before I was able to hold him once.

I watched his BPM (beats per minute) on the monitor reach 200 while he had pulmonary hypertension.

I got used to the alarm going off because his O2 levels were to low.

I learned how to stick a tube into his nose, down his throat, and into his stomach so I could feed him.

I kissed him goodbye for his malrotation of the intestines surgery, and then went and ate lunch with my husband, like it was any other day..........................


I was NICU ROCK, I was already laid out on the ground, knocked down from the diagnosis, and all that I had witnessed.

It has almost been two years.

He isn't Alexander Jon Pruitt (Room 1849) to me.

He is Bird, Albie.

He loves to snuggle,

he loves to read books,

he loves to laugh,

he loves to lay on his pillow,

he loves pressing buttons,

he loves his music cube,

he loves peek a boo, and patty cake.
He loves the wind in his face.

He LOVES his mamma.

His brothers can always make him laugh.

He loves his bath,
he loves to explore,
he loves to sit on his bottom, and go around in a circle on the kitchen floor,

He loves chocolate chip muffins.

He loves cell phones.


I really don't want to do this.
Im NOT the the ROCK that I was.
Im his mamma.



Saturday, July 18, 2009

Just passing the time.

Trying not to think about what is to come. Friday the boys, and I, yes, I went on a bike ride to the park. Alex loved his bike ride this time, much more than he did on mothers day. He giggled on the swings, and loved being with his brothers.


Today Adam took the boys on a bike ride. We are just passing the time, trying not to think about Monday.









I will be twittering as soon as we are up, and on our way Monday morning at 5:00am. Surgery begins at 7:15 central time. Hopefully Monday night we will be home, and I can give a quick update on our status here on the blog. If not I know Myssie will give an update for me.




Friday, July 17, 2009

I dont want to....................

I don't have any cute pictures, or anything deep to write about.

All I can think of is surgery on Monday. We are the first surgery of the day, so we have to be there at 6:00am. Hopefully this will give us enough time to recover, and we really will get to go home same day as they are saying. Follow us on Twitter for the latest updates.

Alex is having his testes brought down, his right eye probed (blocked tear duct), and is being circumcised. The doctor is pretty sure he can feel one of the testes, but cant feel the other, and cant even see it on ultrasound. I'm worried this may mean actually cutting him open to find and bring it down. Which may mean staying in the hospital. He is being circumcised just for cleanliness issues, since he did have kidney reflux, and was at a higher risk for UTI, and other infections it seems like the best thing to do for his health. His right eye's tear duct is completely blocked, and I'm hoping the probe will take, and he wont wake up goopy, and red every single morning!

RTS kiddos have been known to have trouble under anesthesia, Alex hasnt had trouble in the past, so Im hoping we wont have trouble now.

I don't want this to set him back.

I don't want to leave him.

I don't want to think of him being cut on.

I don't want him to go under anesthesia.

I don't want to wait 4 hours.

I don't want to hurt for him while he recovers.

I don't want to worry.

I don't want to wonder.

I don't want to do this!!!!

Thursday, July 16, 2009

Steps in the right direction!

Alex has started to roll the ball back to us! Before he would hang onto it, mouth it, and hug it. Now he knows how fun it is to roll it back and forth! A step in the right direction!



Yesterday morning while his speech therapist, and nutritionist were here. He had grown so well, gaining a few ounces, and has hit the 32 inch mark in height!! I told them how well he has been eating by mouth, new textures, and the amount has increased greatly. I have been instructed to keep a 2 day log of the food he eats, and the next time we meet, if he has grown well, and is still eating well, we are going to cut back on his tube feedings!!!!!! THIS IS A STEP IN THE RIGHT DIRECTION!!!! I don't know how much, maybe 10cc, maybe and ounce at a time. I don't care, this is the first step we are making in letting go of the tube! Don't be fooled, we have a long way to go, but its a step, and a step worth celebrating!!!!!
p.s
Still havent opened the envelope, I just dont think I will. Only 8 more weeks!

Monday, July 13, 2009

Up, Up, and away!

Alex can now crawl up the full flight of stairs in our house, with a bit of motivating of course, and someone right behind him. Occasionally he will try and sit back on the stair, and as you can see there is no railing on one side of the stairs so we have to be right there with him. He wont try to climb the stairs without some sort of motivation yet, but we are excited he has the strength to go all the way up!



One week from today is Alex's surgery......

Friday, July 10, 2009

Numbers, numbers, numbers.......


I have been thinking a lot about all the tests, and scores that are involved with Alex. Tests to show his progress, and to show his delay. According to his tests Alex is functioning anywhere from 9 months- 15 months depending on what skill. What I have learned is that these paper tests miss so much. They don't care that Alex knows when its time to turn the page while we are reading a book, they dont care that he knows how to put his letter magnets on the fridge so they stay. They don't care that he knows what button to press to get a certain sound from his music toys. they don't care that he cries when we close the book at night because he knows its time to go to bed. They want to know if he is walking yet, or putting two words together.

Alex knows so much more than the tests says he knows, so Ill continue to let Alex be tested, so we go through the hoops and motions that get us help, but I don't care about the numbers. I dont think he does either.........................


Thursday, July 9, 2009

Monday, July 6, 2009

What did we do in Colorado?

We saw fireworks..... Because of the wood floors Alex did LOTS of cruising, and even pushing his toys around and walking......

Jumping........



Exploring the mountains with cousins.........
















We Remembered............





Alex started eating one entire nutrigrain bar everyday. Yes, it takes him all day, but that's 130 extra calories!




We licked the horses salt block........













We played at a fabulous park..............




















We splashed in the water..................






We swung............



We saw rainbows...................




The truth is it wasn't all rainbows for me, Alex did fantastic. He adjusted to sleeping in a new place, he didn't cry on the plane, he let people love on him, and he played like he was at home. He ate better than he ever has, and only threw up once. For some reason though our first vacation with Alex was a gigantic reminder of how different things are now. How much harder it is, and how easy it used to be. Nothing significant happened to make me feel this way, maybe because I was out of my normal environment, my normal routine, maybe because it was my first time to Colorado with Alex. What ever it was it was like the GIGANTIC RTS hand was slapping me right in the face, and I had a really hard time accepting it. I just wanted to be on vacation with all my boys, have easy going days, and relax, but there really isn't relaxing with syndromes. Its just part of this new normal.