Where oh Where...

.... has the time gone? I meant to make all these posts right after the surgery happened so I'd get the facts straight and have everything documented. and well that would have been a great idea because now I don't remember any of it!

I guess I should just be grateful that I wrote down/posted what I did, b/c honestly I wouldn't remember half that stuff either!


we were at dinner tonight with some new friends and somehow we got to talking about tate's heart surgery and it made me want to come back and check this blog out and its kind of sad for me that I didn't document it all.

I remember having to do pre-op stuff the day before... I remember freaking out about being late. I remember not sleeping the night before and being a total ball of nerves. I remember how quick the surgery went, because we were told it would take much longer. I remember the sudden feel of relief wash over me like a wave when we finally got to see Tate again right after his surgery, and how tired I felt instantly. I remember he got to leave the PICU really quickly. Like what they took him into the PICU around 5:30 or 6? (see i can't remember) the night before and he got to be discharged to upstairs around noon. (he couldn't have gone sooner, we were just waiting for nurses to finish their lunch so they could transport him). So less than 24 hrs. He slowly but surely lost more and more wires that were attached to him. Until he was just stuck w/ the chest tube (which was really the most annoying one), the blood pressure thing on his foot and the little heartbeat ones hooked to his chest, man i used to know what those were called and now I'm drawing a blank. See what over a year will do to your memory?

So surgery was on a thursday afternoon/evening. So the day after would have been friday and I guess thats where I've left off.

We were moved upstairs to the heart patient area... I can't even remember what floor that was on... 3rd? He had his own room, over in the corner. It was spacious and had a wonderful view. Not that Tate ever saw out of it. That day we spent in that room all day with him. We might have left him at dinner with the nurse, or we may have brought food in, I honestly don't remember. He was still pretty out of it, but we were allowed to hold him. He still had that chest tube in, and he had that for the majority of our time spent there. He was only allowed to leave 24 hours after having the chest tube removed. It was rubbery and whenever he moved, it moved and it "tugged" on him, and if you can just imagine--that wouldn't be comfortable for any of us. But he was a trooper.

Saturday the 4th of July we had some visitors. Ryan's sister Rachel and her boyfriend Nic came to visit. Then that night my sister laura and friend Molly came on their way back from taking care of my older ones. They were our angels, along w/ grammy and nick and susan. It was so nice to be able to focus on Tate and what he needed and to know that Ryley and jackson were being well cared for. That night Ryan went out and got us all Olive Garden for dinner. We ate, then Molly had to go, but laura stayed the night.

Ryan offered to sleep out on the couches in the foyer, so that laura could stay in the room with me. I slept on my handy dandy parent bed, and laura got to sleep on the make shift one on the floor using an extra pad from my bed. (thats how ryan was sleeping too--it worked fabulously.... i'm sure the doctors and nurses thought we were C-R-A-Z-Y... BUT it helped us stay together and that was the best thing for all of us! ok maybe just for me...i can't speak for Ryan and Tate, but i was glad to be together).

That night also since we had such a wonderful few and it was the 4th of July, we got to see over 13 different fireworks shows off in the distance. It was kinda cool. Laura and I watched them, while ryan watched some dumb movie... drillbit something or other. Tate slept. Oh blessed morphin.

While Molly and Laura were there Tate was being all show-offy and was pulling himself up on the sides of his crib/cage. I kept making him stop because hello.... rib cage wired together, and vertical incision down your chest... probably not a smart move!

Its so amazing to me how quickly little babies and children can recover from these MAJOR things. How they just sort of bounce back and how they take it in stride. If I in were tate's shoes, I would have been such a baby! If I ever find myself in those shoes at any point from here on out I will be such a big baby.

Sunday brought more visitors. The Coltons stopped by w/ dinner. We were able to go down to the hospital playroom. Tate LOVED it. We took him naked because thats how he was inthe hospital, no need for clothes. But after we got back the nurse told us we could have put clothes on him. I think by that point he had his chest tube out. Yeah he had to have, because in the playroom he was ALL over the place. A couple days before we left for surgery he learned how to crawl, so he was crawling all over and pulling himself up on things. He was loving every minute w/ the fun toys they had there.

That night we dressed him, and put him in the wagon and walked him around the hospital, and we got ice cream and walked around outside in the garden out front. It was the nicest day we had in the hospital. Its amazing how much better everything is after the chest tube is out.

I forgot to mention that every morning, bright an early while we were there, the surgeon and the cardiologist team would come in around 5:30 or 6am and make their rounds. they'd check on Tate and they'd really only be in the room for a minute. It was always wierd having them there and waking up to that. I'm sure we were a sight to see on our little foam beds in the corner.
After they left, the nurses would get tate completely naked and weigh him. Then they'd take him (diapered back up) down stairs to get xrayed. I hated the thought of him going alone, so I'd always get up and go with them downstairs for the x-ray.

the morning that laura had stayed over (cuz her flight wasn't until the next day), she was fortunate enough to be sleeping on the floor when the nurses undiapered tate and put him on the scale and he peed straight up and over about a gallon of urine all over the floor--some of it landing right on her! lol. he made quite the scene. i think it was that same morning when i went down for the xray with him that it was the hardest one for him yet. it might have been that they were weaning him from the stronger pain meds, or actually now that i think of it and i think the nurse missed a dose in the middle of the night and he had needed another one before they left for the xray but he didn't end up getting it until after.

the hard thing w/ the x ray was that they'd pick him up from his bed and put him on the x ray table. they'd need an x ray of him laying flat on his back, and the nurses would hold him flat and still for that, then the worst part... they'd need a sideview x ray, they would hold him on his side and he did NOT like that one bit. I was so sad for him and so mad that they didn't give him his medicine before he had to go through that. ughhhh...

ok i can erase that thought from my memory now.

Sunday morning right after Ryan left to take laura to the airport they came and removed his chest tube. I thought I was going to have to leave the room for the procedure because it sounded like too much for me, but again I didn't want him to be alone for anything.... and since ryan was at the airport w/ laura I stayed. It wasn't bad, they gave him some morphin before they took it out, even though he'd been off of it by that point. It was a quick procedure. He was so much happier once it was out. And of course we loved that he was happier and we moved that 24 hours later he'd be able to discharge.

It was seriously amazing to me that Thursday afternoon he went into surgery--major open heart surgery-- and monday morning he was released and was able to go home. It was a miracle.

It was so nice to be home and to have all of that behind us. Of course there were the little things like recovery and check ups and such that had to be done... and will continue to be done once a year (the check ups that is)--but for the most part it was over... all that stress and worry.

I could probably go on and maybe i'd remember more the more i take time to remember and process this stuff again, but ryan is climbing into bed-- pretty much kicking me out... well, it just means i have to go to bed now.

I can't believe its been over a year since this all happened and really at this point it doesn't feel real. I know we experienced this. The scar (though barely visible) is a remind to me daily that Tate is our strong little {miracle} man.

SURGERY DAY!!!

I got up whenever it was Tate got up that morning.... its all a little blurry to me, seeing as I didn't sleep the night before. Since his surgery wasn't until the afternoon we didn't have to be to Primary's until noon, so we were able to take our time in the morning... eating breakfast, chatting, getting ready, etc. Tate wasn't allowed to eat anything after midnight.... I think he could breastfeed until 8:30am... then only clear liquids until 10am.... after that he was allowed nothing. This made him slightly cranky. We gave him a freeze pop right before his 10am cut off and then he finally gave up on being cranky and fell asleep in my arms. Which if you know him, know its very very rare, if not impossible for him to fall asleep anywhere but his bed!

My sweet baby boy!
When we got to the hospital we went straight to same day surgery, where we went the day before. This time we were given a little light up device, just like the kind you get when you go to olive garden and there is a wait. I had to register his waiting device in the computer and then we waited for a little bit. I'm sure we didn't wait very long but when you're already anxious as it is it seems a bit long.

While we waited we all took turns loving on Tate and getting our pictures taken w/ him.

I love this one of Ryan and Tate.

Grammy!

Then our little device lit up and I went over to fill out registration paper work. The next step was for it to make noise, so we waited again while it was blinking (and confusing us no less...) and when it beeped we were sent back into the examine room.

We had a very none helpful, and confusing nurse taking care of us. She had an accent so it was hard to understand her a lot of the time. And then there was one point where she asked us what pain level we wanted for our baby.... "on a scale of 1 to 10 what pain level do you want for him?"

WHAT?!?!?! You're kidding me.... right?

Nope, she wasn't kidding... we had to "pick a number". She showed us a chart where 0 was a smiling babies face and 10 was a screaming baby w/ tears on its face. No freakin' way!?!?!

Can you guess what number I picked???

The nurse brought in socks and a gown for Tate to wear. I thought there was NO way those tiny socks would fit on his feet... so we took a picture.... but lo and behold they did fit.

He was so cute in his hospital gown... though we all agree we wish they'd had a cuter one... maybe a plain colored one... with no pink on it.

Here's Tate's tag he had to wear. It was so comforting to me to have this tag on and to see the nurses and doctors check it everytime they gave him anything or did anything to him. They scanned it and got the approval from the computer before anything. Loved it.

No 10,000 times the dosage of heparin for my little man!

Tate was still super hungry... getting hungrier by the second.... so we had to distract him with little things, like the plastic bag that his socks came in. He was actually pretty good for not being allowed to eat anything for so long.

Then they took us to the pre-op waiting room, where all the surgery patients waited for their surgeries. I think we waited here the longest. We were given a nice little waiting area w/ four gliding rocking chairs. All the other kids going into surgery were older and so they were having nurses come w/ pictures and tell them what to expect for their surgeries.

I was so grateful Tate was so young and got to remain blissfully unaware of what was about to happen to him.

After waiting a long time and fussing over his hunger (I can only guess... especially since he kept pulling at my shirt and head butting me in the chest), he eventually fell asleep and remained asleep we had followed the anesthesiologist down the hallway to the operating room doors and handed him off. The anesthesiologist said we should all give him our last little hugs and kisses and then that was it. I put him in the anesthesiologist's arms and watch him take him past the red line on the ground and through the OR doors. That was it.

I had imagined there would be tears. I had imagined there would be uncontrollable shaking. I had imagined it would be so much harder than it actually was. I felt totally comfortable handing him to the anesthesiologist. I felt totally comforted that everything would be alright. I mean, those "what ifs" that I'd been obessing over for the last two months (actually the last 10 months if we want to be realllllll honest about it), had all but disappeared. The three of us walked down the hallway (following the umbrellas on the floor) to the same day surgery waiting room. We had DREADED this waiting room after getting the tour the day before because it looked totally tiny and cramped. Silly us for thinking it was only that one side, when we got to the door we saw that the waiting room was actually 4 times the size we had thought it was and much more cheery and welcoming than it looked the day before. Ryan and I checked in at the desk, and mom scored us some sweet seats in the corner of the room, away from everyone else and on the GREEN chairs! Which I had wanted, because of course Tate's color is green... gotta represent!

The time waiting for the surgery to be over is kind of a blur. We never really got to a point where we were watching the clock and wondering where on earth our updates were. It was 2pm when we handed Tate off to the anesthesiologist. It was 3:30 when we got our first update from the desk nurse saying they had finished getting all the tubes and things hooked up to him, and had finished the echo (through his esphogus... i think....) and were just beginning the surgery. She told us the next update would be at 4:30pm. I was the one who got the first update at the desk because Ryan was out searching for food for us (Panda Express).... He got back and I'm not sure but I don't think we were done w/ our food yet when they called us to the desk again at "4:28pm" (two mins. early!! sweet), saying they had finished the surgery, everything went well, they were closing him up. What?!!?!?! Seriously??? We were told to expect the actual "surgery" part to take 3 to 4 hours... not ONE!!!! It just blew our minds. The nurse on the phone told us that the dr. would be down to speak w/ us soon. At 5:45 Dr. Kouretas met us in the waiting room. He said everything well "fine", man I hate that word and then asked us to follow him to a room to speak further. I wasn't freaked out by this, I had seen lots of other parents get called into that room to speak, but mom hadn't. Mom freaked out in her mind a little bit.... was thinking "pace maker" i think, since Dr. Kouretas had warned us the day before that it was a very small possibility. Turned out (as you know) that everything went FABULOUS. Of course Dr. Kouretas didn't use the word fabulous, but rather "fine"... did I mention I hate that word? Anyway, he said we could go meet Tate in the PICU in about 45 minutes.

Here we are reading the hearts everyone wrote for Tate (and us). We read this from the time the nurse said they were finishing up until the dr. came to speak with us.

Since we had 45 minutes to kill, Ryan hung out in the surgery waiting room and mom and I ventured to the 4th floor NICU nursing room so I could pump for little man. Here I am in the elevator going up..... mom liked to take pictures of all the cool art work they had throughout the children's hospital. She knew G.G. would want to see.

Walking down the hall as fast as we could to go see our baby!

And then there he was. In bed 7 (I think). It was all the way on the left side, in a little secluded corner. Which was nice.

I can't really put into words what it was like to see him for the first time. I know for Ryan it was a bit more of a shock to him. For me, I wasn't shocked. I had researched and seen picturse online (call me crazy)... I knew what to expect and I had been picturing my baby like that for months (not on purpose). For me it was a relief to see him again. It wasn't at all what I would prefer to see him like.... all out of it and breathing really wierd and irradically.... but it was a relief to just see him. To see him breathing... irradic yes, but breathing! And no breathing tube nonetheless (we were told to expect a breathing tube for the first day or two....).

My relief came in the form of sheer, and sudden exhaustion. I didn't cry at all, like I would have expected. I just got super tired all of the sudden. I could hardly keep my eyes open.

Ryan on the other hand felt really sad for his baby having to hooked up to so many machines and breathing like that. I think the breathing part bothered him the most. For the half an hour we were allowed to stay in there before the nurses shift change hour @ 7-8pm, Ryan never left Tate's side and rarely let go of his hand. It was really sweet to watch.

Here are Tate's nurses when we got in there. I wish I had thought to get pictures of Tate w/ all his nurses, especially my favorite (Shelley).... these ladies were really only his nurses for like an hour. They said no facebooking them... but this isn't facebook! lol.

When we had to leave for shift change we walked down to the PICU waiting room and sleeping rooms. Ryan was given a room like we had asked for to spend the night in (it was just a room the size of a closet w/ a twin bed in it). And mom and I headed back to the Avery's house so that I could get a good nights sleep.

Ryan went back to see Tate at 8pm and stayed with him and his male nurse "Skyler" until about midnight when he went to the sleeper room to catch some sleep. We were both so blessed to feel calm and confident in the care Tate was receiving to both feel okay to leave him in the PICU alone. I had planned all along to never leave his side. I'm so glad that we did though and were able to get the much needed sleep.

(Stay tuned for the next post.... Post Op: Day 1)

July 1st 2009: Pre-Op

Around 8am on July 1st Ryan got into his car, and Tate and I got in my car and we headed down to Salt Lake City. We had to be there for Tate's pre-op work no later than 1pm. I was a total ball of nerves driving down. My hands were all sweaty and my stomach was in knots. Tate fussed off and on like he usually does on these long car rides. We stopped in Fort Hall to get gas and to feed Tate... or tried to feed Tate... he really just wanted to play and get out of his seat--he couldn't care less about the food. But we had to get back on the road, so I threw him a biter biscuit and hoped it would work... but it didn't. Eventually he cried himself to sleep and we had a couple hours of quiet driving. On our way to the hospital we swung by the airport and picked up Grammy. Then it was racing to the hospital. We were about 20 minutes late but no one said anything about it. What a relief!
First stop was Same day surgery to meet w/ the nurse and surgeon. We met Tate's surgeon who's name was Kouretas. (I'm so proud of myself to NOW a month later be able to pronounce his name... I never could pronounce it while we were there so when people would ask who the surgeon was I always had to say "I don't know.... but I can kinda sorta maybe spell it correctly..." Its pronounced like.... COR-ET-US.) So anyway, we only met w/ them for a short few minutes to get our information about what time the surgery was the next day and all that. We were hoping for a morning surgery, but we were scheduled for 1:30 in the afternoon. It ended up being fine and probably actually better that way, if you ask me.
Next stop was the lab for blood work and a urine sample. The blood work was quick (but I won't say painless).... then they put a bag on him to collect the urine and we waited... and waited.... and waited.... and waited.... I nursed him two or three times and still nothing. We put his feet in warm running water... and nothing. About this time we had a visitor. Sister Colton (from our parents' ward back in MD was in town) stopped by to give us a thoughtful gift. It was coloring books and crayons, etc. to help distract us during the waiting hours of surgery. So sweet.
After an hour or more of waiting for Tate to pee we gave up and asked if we could go to the x-ray while we waited for him to pee. They said yes, so off we went to x-rays...

Tate was so happy and smiley as I got him ready for his xray.

But he was not too happy when they actually had to do the xray and we had to live the area.

Over the next week Tate grew to hate xrays more and more!! One morning in particular was especially difficult for him and me. (More details in later post).

After the xrays, we went back to the lab and tried his feet in the warm water again. It worked, he peed.... but only a tiny bit. I just wanted to show it to the lab people and have them say it wasn't enough so we'd keep waiting, but they said "you never know... it could be enough", so they pulled the bag off of him (side note: super painful!), it wasn't enough, I knew it wouldn't be... it wasn't even half of what they needed. So they bagged him again. And we decided to leave. None of us had eaten a single thing all day and by this time it was 4:30. We found a Chick-Fil-A and while we were eating I realized Tate had filled his "bag" and it was making him uncomfortable. After much talk of what we were going to do, we decided to head back to the hospital and give them the sample, let them take the bag off. (The other option was us taking it off ourselves and keeping the urine in a cup in the fridge.) After Tate finally got the urine sample thing done and over with we headed north to Bluffsdale where we were going to stay with our friends the Averys.

It was so nice to be at the Avery's. For one we hadn't seen them in a long time. For two it totally relaxed us and took our minds off of what was coming the next day. Shannon made us a nice dinner of lasanga and we sat around w/ her family and enjoyed a meal. It was fun to see how big all the kids had gotten and to watch their personalities. It reminded me a lot of my family when we were all their ages. So fun. We had a nice room to stay in and the boys got their good nights sleep, while I let my mind race a million miles a minute and didn't sleep one bit! Truly frustrating.

Here is our angel Shannon holding little man the night before his surgery. She was showing him pictures on her cell phone. And that's Tate's build a bear we made for him when we had to come down in May for his sedated echo. We put a beating heart in it, so its his "heart bear".

Surgery is a Success!!

Tate's surgery went wonderfully! It went quicker than we had anticipated and everything really is going much faster than we thought it would. He will most likely be moved out of the PICU this afternoon/evening, which is like less than 24 hours after surgery. Crazy! Of course, now that I say that, watch the nurses/doctors change their minds. Either way, he's doing amazingly well and we just couldn't be happier. We have felt all the love, support and prayers on our and Tate's behalf. I know those prayers are the only thing that got us through yesterday like it was nothing at all. Its now 22 hours after we had to hand him over to the surgery team, and we just got to hold him for the first time, which again was much sooner than we had anticipated. I held him for a while and fed him a bottle which he downed, and now Ryan is rocking him while I update the blog. He's drinking his milk faster than I can pump it he's really doing so great. We're about to go to the cafeteria for lunch and to pump some more while he's full as a tick and sleeping. Here are two pictures from our day yesterday.

This is in Pre-Op "3". We sat in these rocking chairs for a long time waiting to be taken back for the surgery. Tate was super hungry and eventually gave up and fell asleep. He was sleeping when I handed him off to the anestialogist @ 2pm.
6:30pm was when we were allowed to go to the PICU to go see Tate for the first time. So only 4 1/2 hours from the time we said "goodbye" till we got to say "hello" again.

We love this sweet little baby.

And.... We're Off!!!

Today @ 8am we will be leaving to drive down to Salt Lake City. Tate has to report to Primary's by 1pm to start his Pre-Op work up. First he'll have a physical/medical history interview/info. about surgery given to us. Then he'll have lab work, and then an x-ray.
Thanks everyone for your thoughts and prayers for our family and especially for Tate. This whole experience feels quite surreal still at this point. I'm very calm. Part of me knows its because of all the prayers on our behave and because its from Heavenly Father letting us know that everything is going to be okay.... and part of me wonders if I just haven't quite processed that fact that it really is going to happen tomorrow....

Anyway... we're off... SLC here we come!!!

Our Insurance Rocks!

I meant to write about this weeks ago.... but was reminded of this because of 'John Q'. Our insurance is awesome. Seriously, its not that I haven't had problems with them in the past, feeling like they should have covered something when they didn't and what not... but with this experience of actually really really needed our insurance, it has proved to be a huge blessing. Actually in past years we've always wondered if we shouldn't just cancel our insurance and pay out of pocket like friends of ours have done.... it always seemed like the money we were putting into our premiums weren't getting us anything in return because onto of that we of course had deductibles and out-of-pocket quotas. Of course now, Tate's surgery is making up for all those past years premiums and then some! Like LOTS of some!!
Anyway... on to why they're really awesome! So the end of May I called the insurance company to have Tate's surgery pre-authorized. I felt so dumb talking to the lady on the phone because she asked questions like "who is the surgeon?" so she could contact him and verify everything... I didn't know the answer... I actually still don't know that answer! We will find out who the surgeon will be the day before the surgery. So I ended up only being able to tell her Dr. Judd's name and gave her the same phone number I have, that never led me to anyone helpful at all, during that run around period of trying to get the results of Tate's tests done at Primary's.
Fast foward to the following week. Ryan kept getting calls AT WORK from the insurance company's Melaleuca representative. When ryan got the messages that this person was trying to get a hold of him, he thought it was some mistake.
So he finally called the guy back and found out that he was calling to let Ryan know that Tate's surgery has been pre-authorized. That they got everything verified and then also wanted to check on us and make sure we were alright, and to see if there was anything else we needed. The guy was super nice and very supportive about this hard situation for us.
How awesome is that? Seriously, I've never heard of insurance companies caring so much and going out of their way to lend their support. And what a weight off our shoulders to know that everything is squared away with the insurance company and that Tate's surgery is covered.

For Real?

So we finally received the information packet in the mail Friday afternoon (of course after I had called that morning and left a message for our contact at Cardiothoracic surgery... ugh. She'll call me on Monday and I'll have to tell her we got it.) Anyway, there is now less than three weeks until surgery and its becoming more real.

After the initial news of Tate's surgery I freaked out a bit. When we got the surgery scheduled I was calmer because for one thing it was a ways off! That was a relief to me. I think that though its been in the back of my mind all the time, I've been able to distract myself with other things. Making this blog for one thing has been something I could put my thoughts and energy into as far as thinking and planning for his surgery. I also have plans to make him one of those photobooks to document every little step that he's had to go through to be healed, so he can have it for when he's older, so I've started to focus on my plans for that.

Reading over the packet of information about what we're to do upon arrival.... where we'll go... what we'll do.... what Tate will go through, before, during and after his surgery... it really makes it hit home. My baby really is going to go through this....

...for real!

I know everythings going to be okay, its just the anticipation and 1000% wishing this wasn't real... that this was just a dream. It'll be nice to be on the other side of all of this. By the end of the summer this will all be far behind us.

------------------------------------------------------------------------

PS- On a mostly unrelated note... one of my all time favorite movies is on this weekend on TNT (3:30pm here in Idaho). John Q. I saw it in the theater in college w/ my roommates, and have loved it ever since. Ironically its about a little boy with heart issues. If you've never seen it, watch it. Its fabulous.