Odds and ends

November 25th, 2007 Not much happened, I didnt even get pictures. We waited for Peyton to lose the needed fluid and hoped that the following day would be "the day" taht they would close up Peytons chest.

I liked taking pictures of Peytons hands and toes and feet....so while i dont have any pics from today a year ago, I have some of them that i thought were cute.

Have a great day! See you tomorrow!

November 22 - 24 in Peytons Life...

Big things happened one year ago on these days. On the 22nd, not much happened, we just waited for him to loose some of the fluid so that they could close up his chest. That night they decided they were going to maybe take him into surgery the following day and close up his chest. He had lost alot of the fluid that they needed him to (he weighed 9 lbs when they weighed him on the 22nd and the next morning, he weighed 8 lbs.) He's filled with all this fluid. Anyways, he had lost so much fluid that they were teasing that he was an "over achiever" and had lost too much fluids. They actually had to give him more! Other than that, things had been pretty much normal - well as normal can be. So, on the morning of the 23rd, after the doctors did their rounds, they werent sure if they were going to do the surgery or not - it was up to Dr. Hennein. At about 12, another doctor came in and told us that he had decided to wait on the surgery until monday - the 26th to give the swelling in his chest more time to go down. After the chest was closed, we'd be waiting a few days for the vent to be taken off and then after that, slowly each of the other tubes would be removed. Slowely but surely....we were making it. He's such a little trooper.

On the 23rd, he looked up at me and tried to "talk" but since the vent was in, he couldnt and it ticked him off and he started to cry. he didnt want to go to sleep and he'd lay there and look around and he just looked so miserable to me. I know he didnt understand but I kept telling him that it was for the best and once he was all better, we'd be able to go home and he wouldnt have to worry about any of the tubes. He just looked so scared.

You can see the difference between a day, he looks a lot less puffy in the picture below than the picture above.

On the 23rd and 24th, Peyton had some visitors. Before they could come in, they had to be checked incase of a cold or such and children couldnt come in. Each visitor had to get a badge and wasnt aloud in without Rick or I. Peyton wasnt as sedated and actually had his eyes open alot more... on the 23rd, his Grandpa Eyler and Aunt Amy and Aunt Stacy came to visit.

On the 24th, Peytons Pap and Grandpa Trescott came to see him. He enjoyed looking at new people and having visitors, though it would get him excited and he'd start breathing over his vent again.

Peyton liked to hold hands with mommy and daddy and that's where we would spend alot of our time.

If you notice, through all the pics, his swelling is going down signigicantly...looking good for the 26th!!!!

Amanda

One year ago Peyton was taken off ECMO

Good news came to us one year ago today. Overnight, Rick and I had came home and stayed with the boys and as worried as I was, I managed to stay there all night. Peyton was scheduled for a "wash out" surgery in the morning to make sure there was no blood clots and such and to just cleanse his chest out of the dry blood and all. Rick and I were obviously unable to make it up before he went into the surgery but we called to check on him very frequently. On the way up, he was still in surgery and when we got here, the nurse caught us and told us some great news. Peyton is off of the Ecmo machine.

When we finally got to see him he was heavily sedated. They had put his mittens on his feet which meant the swelling was kinda going down. See his puffy little hands? Now that ECMO was off, they had to wait until he lost alot of the fluid before they could consier closing him up. Daddy holding Peytons hand. We both spent alot of time at his bedside - which got us in trouble some time b/c it would get him excited and then he would start breathing over the vent more and then the alarm would go off and then they would come rushing in only to see mommy or daddy standing by the bedside saying "sorry, i was talking to him".

From the door to his room, what a mess. The machines on the right are all the IV monitors. They controlled how much and when and where and what kind. They alarmed all the time too.

Here's a "whats that" picture. The Red tube coming from out of his chest is his drainage tube. That drains the blood from his chest around his heart. the other thing coming from under the bandage is the pace maker wires from his external pacemaker. They never had to use it! The IV in his arm was a PIC line that could be left in for days and would stay good. This was so they didn thave to keep poking him. He also had a cathetar in as well as another PIC line in his neck. This day he had the vent on as well.

Now, i Have a wedding this weekend, but i'll try and post as i'll ahve my slow laptop with me....lol. Have a great weekend if i cant and If i cant, I'll catch back up on Monday.

The day after...

So today is one year to the day after Peyton had his heart sugery. A year ago that Rick and I woke up wondering what the walk down that long PICU hallway would bring us. Peytons room was at the very end of the hallway...the biggest room - only because it was him, a crib, many many machines and an ecmo machine...and the whole ecmo team. The machine took up the whole room. It took the blood out of his body, circulated it and oxygenated it and then put it back into his body- giving it enough "umph" to pump through his whole body while letting his little heart rest. Every few minutes, a member of the ECMO team would check his tubes, making sure that there were no blood clots in the tubes which could cause a stroke or other serious problem. If the blood wasnt kept to a certain temperature, it could have caused Peyton to have hypothermia. So many thigns to think about.

Look at the round little toes, too fat to put socks on. The puffy little arms and fingers - way to puffy to even try and close his hand into a fist. Surprisingly enough, the swellign had went down a little bit over night. Not a whole bunch at all but the littlest bit - either that or they had moved his hat and leads on his head b/c his face didndt look nearly as bad as it did after surgery.

The Day I Became a Heart Mother

One day my world came crashing down,I'll never be the same.

They told me that my child was sick.I thought, "am I to blame"?

I don't think I can handle this.I am really not that strong.

It seemed my heart was breaking.I have loved him for so long.

I will not give up on this child.I will listen to your advice.

I will give my child any chance.No matter what the price.

I will learn all that I need to help my child thrive.

I'll even use that feeding tube. My child must survive!

Will he need a lot of therapy? Will he gain the needed weight?

Please God, help me do this. I will accept our fate.

When the monitors beep at night, it serves as my reminder.

How many parents would love that sound. Tomorrow I will be kinder.

As another Angel earns his wings, I run to my child's bed.

I watch him sleep for quite a while. I bend down and kiss his head.

I cry for the parents whose hearts have been broken. I look to You wondering why?

Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.

My mind says savor each moment he's here,but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.

From wishing for a good nights sleep, to learning every med.

From wondering, "will he be alright?", to watching him reach out his hands.

With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line. I look to them and smile.

You see my child is loved so much. I would face ANY trial.

That scar I trace with my finger (It's the door to his beautiful heart).

God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.

Now wise beyond her years.

For those who have angels in heaven,

Our hearts share in all of your tears.

Every day I will try and remember, I was chosen for him (and no other).

I will always embrace that beautiful day.......When I became a "Heart Mother".

- Author Unknown

Where I spend my whole day - minus lunch which was brought up to the room for me. Those were all Peytons IV machines and on the left side of his bed was his ventilator. Every so often it would go off or "alarm" and people would come running - but it was just water in the tube. Peyton was always "breathing over the machine" or breathing on his own overtop of what the machine was doing for him. What a little fighter.

Peytons Arterieal Switch Day - One year ago today

November 19th, 2007 - Today was the anniversary of Peytons Arterieal switch procedure. One year ago today....at 6 am in the morning, Rick and I were wondering how Peytons surgery was going to go. Wondering if we were ever going to get to take our baby home. Hugging and kissing and holding him...just one last time.

Our little man, just relaxing, never having a clue what was about to go on. That the days to follow would be the hardest days of pherhaps his whole life...days that would put his mommy and daddy to the test.....days that his doctors would question the outcome...and days full of amazement over what a 6 lb baby could actually do.

This last picture was from what the staff called "the point of no return". It was the yellow line. The last time we could see Peyton before he went into the OR. When we had to let him go. The toughest part of this whole thing...not knowing if he was going to make it out of surgery. There was a small office room next to the line and the councelors were allwoing us to go in there to regain composure before going back out to the waiting room. I think it took us about 5 minutes before we left the room.

7:40 Peyton went to the OR

9:30 They had started surgery

10:25 Things were looking great

10:40 His chest was open and they were working with the angel hair veins - doing well on bypass and stats were good

1:30 They were done with surgery and looking with a probe to check for problems

***At this point, i had never ever felt the way I did during this wait. We waited three hours to hear something else from anyone. Anyone at all. Nothing for three hours. I was thinking to myself that Peyton hadnt made it. That his little heart wasnt strong enough to pull him through this and that someone was going to come out and tell me that we wouldnt be taking our precious little miracle home. I was waiting and I just knew that i would hear that.

Finally, they came out and told us that they were finished with the surgery. They had decided to put him on ECMO which is a small heart and lung bypass machine. My baby was on life support. When they had taken him off of bypass - his heart couuldnt handle working "the right way" and pumping the blood all over and it wasnt pusing it past enough and hard enough so they put him on bypass. What a little trooper. I didnt take any pictures that night.

When Rick and I walked into the room - wait...when we walked down the hall and I saw him laying there...tubes and all - i lost it. I tried to be strong and I tried to keep my composure but i just coudlnt. It wasnt the tubes that got me, nor the wires, breathing machine, blood or bandages and IV's. It was my poor babys face. From the surgery and the fluids and being on bypass, his face and whole body was so swelled up. His face was so scrunched that you couldnt even see his eyes. His hat had holes in it and it was covering up his precious little head and eyes too. There was a large sticker covering his forehead and it just didnt look like him and I cried. I cried so hard. People thougth that telling me that it will be okay would be a good thing to do to. Is that what you should really tell someone who's baby is in PICU on lifesupport...that it "will be okay?" Then came the priest who offered to baptise Peyton. That almost brought me to my knees b/c that meant that they wrent sure if he was going to make it or not. I said no. There was no way because he was going to live and I knew it, he was goign to make it out of the hospital and he was going to get baptized where his brothers did. that was the end to a long night. Back to my "dorm room" for the night after that. We stayed in a parents room that was just big enough for a twin bed, night stand and dresser. No bigger. What a cramped situation.

November 16th - 2007

Saturday, November 16th - What a busy day it was. Mommy finally got to hold Peyton today. For the first time! It was so hard to to get him out and all situated to actually let me hold him.


Peyton was a cold baby. He couldnt have any clothes on so he always wanted covered. Whenever we would get in there, he would cry until we covered him up. The room was breezy so we put these blankets up around him to keep the "wind" from blowing on him.

This was also the day that he had his first bottle. I think he only drank an ounce or so but he did pretty good. This was his nurse helping him. He wasnt to thrilled with her. LOL.

What a long day, drinking a bottle, being held....time for a nap.

Oh yeah, this was also the day that we were allowed to put socks on him. Before they said no b/c of all the other wires and such. He seemed to like it.

Life with Peyton - November 15th - 2007

November 15th, 2007 - Mommy and daddy went again to see Peyton in the NICU. Today, he was scheduled for a scan of his heart. They took the pictures of all around his heart and then they were able to put them all together. They gave us a DVD of it which shows Peytons heart from all angles around. They said that it's the perfect picture of Transpositon of the Great arteries. They said it could be in a text book. They took this so they knew what they could expect while in surgery, which we still didnt know what day it would be scheduled for.

Peyton was on many many different medicines. One that I recal that he was on in the NICU was the one that they discussed he would be on even before he was born. He was on prostaglanden, which helped to keep the hole between the two chambers of his heart open. I believe it was this day that they actually took him off of it. They tried to keep his oxygen level below 100 this week so the prostaglanden actualy had began to help him too much. They said he was the healthiest sick baby in NICU.

Rick finally got to hold Peyton on this day. All the tubes and wires were a mess and it took a long time getting them all situated to hold him. They took his ventilator off of him also so it made it alot easier to move him around. His face was pink from all the tape from the vent.

Peyton getting ready to go to the scan. It took about an hour to get him ready - it was like a traveling hospital room that they put him in. The monitors even went with him.

They asked us if we were interested in participating in a study for something called vein veiwer. it was like an xray machine that helped the doctors to see his veins easier. We could say yes or no and they would draw a number and if we chose a certain number, they would use the machine. They actually got to use it but it didnt work for helping him. They were using it to try and place a PIC line in him which can stay in longer than IV's. It didnt help and they poked the poor baby about 10 times before they gave up. They finally called another doctor in and he was able to get it in. Other than that, not much happened.

In real life, today is Peytons Birthday party, look forward to pictures!!!