For Sara and Jeremy

Just a little gesture from us to you to say thanks for your friendship and good luck. Shall we say, MISSSION ACCOMPLISHED!

p.s. If you're not Jeremy or Sara you probably will not get this!

9 Months Old!!

Look who's turning into a big boy before our eyes, he now sits and plays by himself...

... and stands with a little help from dad.

He has a brand new room that we painted this weekend.

The rest of the house is starting to come together too, we painted the hall today and did the living room last month, I told Julie she could do one room a month, but somehow she keeps trying to sneak in more than one. Next on the the list is either the kitchen (I hope not) or the bedroom. We're trying to get as much done now, so the house will have a semi-finished look when family comes to visit in a couple weeks.

Happy 4th of July

Happy 4th of July!!!

Life

I thought this was funny, I came home the other night and found Thomas in his dirty clothes basket, apparently Paul thought this was a cleaner place to put him rather than on the carpet. But hey Thomas didn't seem to mind.

It was a long road for Thomas' recovery but he is finally sitting up and he is now waving bye bye!

This was our first trip to the pool and Thomas' very first time in the pool, he seems to like it alright. I can't believe that Paul let me post this picture, it looks like he hasn't seen the sun in years! Not that I am any tanner than he is but I would never post a picture of me in a bathing suit.

Well its official summer has started in Arizona, I went to open the curtains to the back door and this huge grasshoper was clinging to the screen. There are so many bugs here it is pretty disgusting, there are also many reptiles all over our yard I saw three frogs yesterday and too many lizards to count

Sorry

obviously it has been a really long time since we have blogged and Thomas would like to take this time to appologize to everyone for taking up all of his parents time. It has been a long road of recovery, when Thomas came home he had a hard time even keeping his head up due to the month long bed rest, we have been trying to work with him a lot on sitting up and tummy time. This is a picture of Thomas' last discharge from the hospital which was on May 23rd. This was his favorite nurse Leslie, she took really good care of him. Thomas is now doing great infact we went to Phoenix yesterday for a chest xray and an echo and both showed no more signs of fluid so our Dr. said it was ok to take him off the low fat formula that he was on Yeah!!!!!

This is it! this is our new house which we love! Sorry the picture isn't very good, I will definitley post more later. We still have a lot of work to do. The inside of the house is painted white, and if I have to live in another house with white walls I think I will go insane! So we have decided to paint one room per month, we have already painted the front room (its just a tan color, but its better than white). We also are going to be putting in grass and a garden in the back yard in the Fall, which I cant wait for, I am just not into the whole rock landscaping look that is all over Arizona. Our back yard is pretty great there are no houses behind us, we have an amazing view of the mountains and in the mornings you can see a whole herd of deer just up the hill.

Happy Day After Mother's Day!

Well, today we had another checkup for Thomas. And what happens at checkups? That's right they do echo's, find fluid around heart, and admit him to the ICU. The day after Mother's Day was no different. He is perfectly happy, you wouldn't know anything thing was wrong, but he has to go in for another surgery since this is the second time this complication has occurred. They opened up his chest, and evacuated the fluid, they said it was under a lot of pressure, and the main reason was to cut a hole and create a window, so the fluid will drain from the space around his heart into the space around his lungs, since the lungs can apparently handle it better, and it's not as dangerous for the fluid to collect there. They put in another chest tube to monitor how much is draining. The only good news is that he was already off the ventilator by the time they brought him up to us. So now he is in the ICU for probably a week or two until the fluid subsides and the hole heals, but who knows. He is stable and seems in good spirits, but it is sure frustrating and scary especially since he showed no signs of distress. Julie practically lives in Phoenix now, and I have started going back and forth and going to work. trying to save some vacation days because we are all going to need one when this is all over. Keep praying for our sweet Thomas.

Happy Mothers Day!

Its finally here! my very first Mothers Day!!
It has definitely been a roller coater ride to get to this point, as many of you know it took us three very long and heart breaking years to get to this point. I definitely have been broken in to the whole motherhood role, I have been thrown up on three times in the last few days, I have been in and out of the ICU, I don't sleep very well through the night because I feel that I have to check on Thomas to make sure he is alright about 10 times a night. In spite of all that has gone wrong for us and for Thomas I am so excited and Blessed That he is in our lives. I have also had a great Mothers Day so far, Paul got me gift cards to my favorite places (Kohl's and Olive Garden) he also gave me an awesome bath pillow and bubble bath, because I love baths and I could stay there all day, especially after being thrown up on so many times. He was also my slave for a day. I also wanted to thank my mom for the gift she gave me I think it was about a pound of fudge (which is almost gone, sadly) she always knows just what to get me when I am having a tough time!

Anything that can go wrong....

So, we took Thomas for his final post-surgical checkup with the cardiologist. Expecting to be the last time we were in Phoenix for a while, we hoped to get the, everything looks good we'll see you in six months, or at the worst, we'll see you in three months.

Well, after they performed an echo (ultrasound) on his heart, the cardiologist comes in and tells us he has a very large amount of fluid around his heart pushing on one side, most likely its inflamation from surgery, but we absolutely need to go in and get it, and keep him overnight. Of course...

So they put Thomas out, back on the breathing tube, back in the ICU, and they perform the procedure to go take it out. They remove about a 1/4 of a cup, oh except its not clear inflamation, its not blood, it doesn't appear to be an infection, well... we don't know what it is exactly. Analyze, wait, culture, wait some more. We think it's fat cells from his diet.....???? Who knows what's going on, but one night just turned into a likely week, as he has drained another 1/2 cup of milky substance out the cathetors they left lying up next to his heart. They are talking about putting him on a low fat diet to try and seal what they think is a breach is some lipid line... that oh yeah... wa probably nicked during surgery. If that doesn't work, did I mention he won't take a bottle, never would, then if the whole is big enough then we're talking more surgery.

I'm just ranting here while I ran home to get supplies, for the unexpected stay, we obviously didn't take anything with us, and just wanted to catch everyone up on our "perfect" lives.

-Paul

Cell phone pictures from this time around... at least he's smiling that makes one of us.

Where's our smiley boy?

Thomas is busy working on getting his smile back, he's still a little upset with us, so in the meantime we wanted to remind everybody how cute it really is, so we posted some old pictures above from before his surgery. A couple are the day before. In the next couple days I'll be adding pictures to the hospital blogs, I tried today, but it wouldn't take. Just a warning some of them are pretty sad, to avoid heartbreak - don't scroll down.

Finally Home

Well, I know he doesn't look very happy about it. But, they finally let us leave the ICU and go home today. We are so glad to be home, sure we're a little nervous not having him monitored by any number of devices 24/7, but he can get better rest and recover more quickly this way. He still has a lot of doctor visits planned, and plenty of medication for mom and dad to keep up on, but it is so nice to be home.

Much Better

Thomas is doing very well. He is still in ICU and probably will be till we go home. But, they are actually talking about days for that now. Hopefully by Wednesday. He is off all the IVs, off the oxygen since about 6 a.m., just a few monitors. He is just trying to stabilize himself now without much support. He is starting to look like our little boy again, we love him so much and can't wait to get him home.

What A Night...

Okay, well I wrote yesterday, everything was going well, Thomas was off the life support and doing well. Well, he got a little too comfortable.

During the night Julie woke me up in a panic. Thomas heart rate had dropped, it was no longer beating on its own, the box was doing it for him. He was unresponsive, to people yelling at him, smacking his feet, even shoving a tube down his throat to suction him had no effect. Up to this point he had been pretty easy to startle. His eyes sockets were sunk in his eyes rolled to the back of his head, and his little soft spot was all sunken in. So, yeah we were scared.

They yanked all his pain medicine again this time, all the drips, and were preparing for a blood transfusion. We sat their for what seemed like hours waiting for the sedation, and other drugs to wear off, for the pain to shock his little beat up body back to life again. Slowly, his heart started to take its own beats again, first one and then a couple together, and after a while it was beating again on its own. We stayed up the rest of the night and into early morning watching our little boy and staring at the monitors just willing them to confirm our boy was alright.

Things are good now, I won't say that today was uneventful, it wasn't. But, they were good events. He got re-hydrated, they finally let him eat, even if it is through a tube in his nose (which he hates by the way - his arms are tied to the bed so he doesn't pull it out. He is off the heart box, he still has the electrical wires inside him wired to his heart just in case. They pulled out most of his IVs including the ones in his neck and groin, his chest tube, the catheter, and the dressing on his wound. He really is starting to look more like our little boy again. They moved him to a smaller bed, let him try to nurse (he threw up everywhere.) And decided he is going through narcotic withdrawals. So they just started him back on one medicine to calm his nerves and take the edge off, we are a little nervous because of last night, but I guess it's better than watching the poor guy wig out and be jonesing for his drugs. He'll try and eat again tomorrow and if he does well, hopefully we can get that tube out of his nose, that should help him feel better. So if your keeping score we are down to 1 IV, 1 feeding tube, a small amount of oxygen support in the nose canals, 4 heart wires just in case, and only 4 electrode monitors for his vitals.

Crazy, but that is a VAST improvement, we might actually get home before May :) Here's hoping for a quite night!

Surgery Update

Thought everyone might want an update on Thomas' surgery. Well, it was on Tuesday morning, today is Friday night, and I am glad to report he is doing pretty good now. It has not been without our share of scary moments though.

He went through the operation fine, everything went very well he performed like a champ. In fact after they got him out he was on no support for his heart, it was beating well on its own, and they were expecting to take the ventilator out in a matter of hours. Well as many of you know thats when things got worse.

Thomas had to be put on a box that would beat his heart for him, and had to be kept seditated and have a machine breath for him also. It made for some verylong stressful days and nights for mom and dad.

Last night his heart was able to take back over and beat on it's own again, and this afternoon they removed his breathing tube. That was pretty stressful for him because they had to take him off his pain meds for a while to ensure he would breath on his own and not be too relaxed. Three hours later he and us are finally calmed down and getting to breathe. We hope he just keeps improving and he doesn't have to be here much longer, soon they claim they'll be able to pull his chest tube and then some of the IVs (which now number 9 down from their high of 12) can start to come out. We'll hope for that sooner rather than later.

Right now we just want what's best for Thomas. He's still a little horse from having those tubes down his throat for the past four days, but hopefully within a few hours that will be gone too and he'll finally get to have something to eat again for the first time in a long time.

We took some pictures, but I don't have a way of uploading them here, as soon as I do, I will. Thanks for all your thoughts, prayers, text messages, flowers, and everything else you do for us.

Love,
Paul, Julie, and especially Thomas

WHAT!!!

BEING EVICTED !!!!!!!!!
Well, I went to the mail box two days ago and what should I find an eviction notice! And guess how many days we have to move out of our house... 30 days! I frantically call Paul and ask him why he hasn't been paying our rent, even though I see it come out of our bank account every month. He tells me of course he has been paying the rent. So I call the property management company to see what is going on. They told me the owner of the property either is going to sell the house or it is going to foreclosure. Well if it isn't bad enough that we have to find a house in 30 days Thomas is having his surgery on April 15th and we have to be out of our house on April 30th. To top it all of we would really like to buy the next house we live in because we really do not want to have to rent another house and then move again in 6 months to a year. So needless to say we are super stressed and will be extremely busy for the next couple of weeks.

Eating Solids

Thomas has started eating solids, we thought we had better start giving him some food when he would cry every time he would see us put something in our mouth.
Much to Paul's dismay we finaly cut Thomas' hair, I am sorry but he looks so much cuter now!