Little Man Tate

Where oh Where...

2010-08-16T19:22:00.000-07:00

.... 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!!!

2009-08-05T08:42:00.000-07:00

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

2009-08-04T09:49:00.000-07:00

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!!

2009-07-03T10:21:00.000-07:00

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!!!

2009-07-01T00:01:00.000-07:00

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!

2009-06-15T15:48:00.000-07:00

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?

2009-06-13T22:40:00.000-07:00

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.

Twitter...

2009-06-11T08:52:00.000-07:00

I joined twitter this week for the sole purpose of being able to update on Tate's surgery from my cell phone. I added a "twitter update" section on my sidebar here on this blog. I can text from my phone and it will immediately show the updates on my sidebar. Awesome.

Or you can go to my twitter profile for more updates (it'll only show the 5 most recent updates on my sidebar here). Or if you have a twitter account you can "follow" me on there and get updates texted to you. (I think).

Surgery is three weeks from today... I can't believe it. Of course its still very scary for us, but also exciting... its like we've been waiting for this since Tate was three weeks old and found out about his VSD. It'll be nice to be on the other side of this whole thing. (Assuming all goes as planned and he no longer has any conditions to worry about).

"Be Positive..." (pun intended)

2009-06-05T20:46:00.000-07:00

After Tate's 9 month well check, we headed up to the hospital to get his blood type tested at the lab. His surgeon's office assistant ask that we have it done and to them no later than two weeks prior to surgery, so they can "gather a supply".

(Anyone else having a breaking dawn flashback? Okay.... so maybe its just me...)

Here's Tate waiting patiently in his stroller and playing w/ his hospital band. I think he was contemplating making a run for it.... if only he could. Poor thing had to be held tight in my arms while the lady took his blood. After she was done she made us wait while she called upstairs because she wasn't sure if she got enough and might have to stick him again. I stood there holding him just praying it would be enough. Luckily it was!!! Yay for only getting stuck once! I called the hospital on June 3rd and was able to get his blood type. Same as me!! I don't know why, but that makes me happy... that we're the same. Makes me feel a little less helpless... if that makes any sense at all.

Surgery Scheduled...

2009-05-16T20:59:00.000-07:00

Got the call. The surgery's been scheduled.

July 2nd!!

After finding out Tate needed surgery anxiety set in. I couldn't sleep or eat for almost a week. Things got better with time, and having the surgery scheduled a month and couple weeks off has helped too. I need this time to digest it, get a grip on things. They say Tate will be in the hospital 7 to 10 days. Funny to me that he'll actually miss his very first 4th of July (in the sense that he'll be out of it and won't get to celebrate the way he would have been...), because I actually decided a few weeks ago on the theme of his party being 'red, white and blue' and kinda 4th of july themed. His birthday happens to be the same day as my birthday and I love all things red/white/blue and patriotic/americana... so i thought it was a way to celebrate his birthday with my fav theme. Then I was thinking maybe it would be "too much" since we'd have just celebrated 4th of july almost two months before... well now its set! He's missing 4th of July, so we're having 4th of July on his birthday. Red, white, and blue... sparklers... maybe some fireworks... It'll be a celebration of many things, because I hear he'll also be fully recovered from surgery right around that time as well!! Love it!

(PS- thinking of making his cake heart shaped. :-)

Results In: Surgery Required

2009-05-12T21:02:00.000-07:00

Tate's bringin' grateful back! Today we're grateful for lots of things.... here are a few of them.

-8:15am wake up calls from doctors w/ RESULTS (finally).
-Good doctors who are thorough in their testing.
-Advances in modern medicine that allow these sort of things to be repaired.
-Priesthood blessings.
-Good friends and family.
-Peace that comes through prayer.
-Comfort from a loving Heavenly Father.

If you can't tell already... the results are in. I received a "wake up call" (quite literally) this morning at 8:15am. It was Dr. Judd calling w/ the results. All three tests showed that Tate's heart is enlarged in an area. That coupled with his poor weight gain means open heart surgery for our little man Tate. Dr. Judd is putting in the order for it today and says the hospital will call us in a week to schedule the surgery. She recommends it be done within the month (or two at the latest). We're aiming for asap. Since he needs the surgery and his little heart and body is suffering from it, we're ready to have this fixed and have him on the mend.
Though the thought of our baby undergoing major surgery is scary and unwanted we are surprisingly calm. And even sure that this is what Tate needs right now. We know this is Heavenly Father's plan for Tate.
A few weeks ago Tate received a beautiful priesthood blessing, given by his dad and uncle Nick. He was promised that he would be healed, and that he would live a long and healthy life. I knew instantly that this was true, and I also knew... felt, that Heavenly Father's definition of "healed" was something different than what I was hoping and praying for. I felt that yes, Tate would be healed... but healed with medical/surgical intervention.
Oh how grateful we are that there is something that can be done to heal our son. We are grateful for a wonderful PA at our peditrician office who noticed the heart murmur and sent us for an echo. We're grateful for a good (though not so fast w/ test results) doctor who monitored Tate for the last 8 months and noticed when there was a problem and sent us for additional testing. We are grateful for the advances in medicine that have allowed these tests, and that will allow the repair of Tate's heart.
We are grateful that he will be healed. We are grateful to have the results. We are grateful for a new "course of action". We are grateful for many many other things that have made this hard time easier to bear. (For example- the fact that things happened to work out so that we didn't move in December, even though at the time it was what we really really wanted... that Ryan hasn't yet found a job in Maryalnd and so we are still in Rexburg... still w/ a good job, with good insurance... etc. etc. etc. This is the Lord's plan for us right now... I know it.)
So.... what's next? We wait. Again. (Anyone else think maybe we're suppose to learn patience through all this?) So we wait for the hospital to call to schedule the surgery. I will (of course) let you all know when we have a surgery date. Dr. Judd says he'll be in the hospital for about 7-10 days. My sweet mother is coming out to stay w/ the big kids while we're in Utah w/ Tate, so thats one less thing to worry about.
Thank you all for your prayers and thoughts over the past several weeks.

Sedated Echo. @ Primary Children's MC

2009-05-01T20:39:00.000-07:00

...its started at 6:40 when I woke Tate up to eat for the very last time before his test. We left our house at 8am. Drove non-stop till we found the hospital (after getting lost a couple times) @ 11:50am. His appointment was @ noon. We checked in a the cardiology department but they didn't have him registered yet, so we had to head to registeration. Where we met our first and only rude employee at the hospital. It took ~~forever~~ 15 minutes to get him registered. Then back to cardiology.

Here are some pictures of Tate towards the end of the road trip to the hospital. He cried, then he chilled, then he fell asleep.

We got into our room in cardiology. Tate was weighed and measured. (14lbs. 3oz.). Then I answered some health history questions, and then the iv team came in. This was news to me, i thought he'd get a drink to sedate him, not an iv. (yikes!) Here he is after being weighed but before the iv. So sweet. So unaware.

It took them ~~two hours~~ fifteen minutes to get his iv in. They tried one hand, no success. Then both feet no success. Then finally got it in his right hand. I won't lie, he screamed the entire time... maybe his mom cried too... just a little bit.

(This picture was after the IV was placed and he was calming down in my arms. No meds yet, just his eyes are like that from all the crying.)

(Here he is all hooked up getting ready for his echo.)

Then they got started on the echo. They let me hold him while they started putting the meds. in his IV. His head and limbs started to get heavier so they had my lay him on the table and started the echo. The sonagrapher started and they had to keep giving Tate more and more meds b/c what they'd given him wasn't knocking him out all the way. He kept putting his hand on the wand and was trying to "help" the sonagrapher. She said it was the cutest thing in the world, she's never had any one do that before. She thinks for sure he wants to be a sonagrapher when he grows up. Finally they gave him enough meds to put him to sleep. By that time the echo was pretty much over with. Then he had an EKG done while he was still in that room.

(His nurse moving him upstairs to recovery)

(Out of it in recovery)

We were in recovery from about 1:45 to 3:30. They let him sleep it off a bit, because they said the meds. they gave him cause hallucinations (oh great). He slept a long time because they gave him a lot and he didn't really fall asleep until they were almost done.

When he woke up they let me feed him. He was so hungry! He ate great, then we were allowed to leave. The nurse took his IV out and gave him this little mini-cast thing to wear for 20 minutes. We went down to radiology and Tate got his chest x ray. Then we were free to go! If his dr. had been there we would have then received the results of his tests, but Dr. Judd is never there... so we wait. She suppose to call in the next few days.

Tate all packed up and ready to go!
Then we went outside to get some fresh air. Four hours in a hospital not fun.

Tate was still a little out of it. Some nurses had commented on how smiley he was after the meds wore off, but he didn't seem smiley to me at all. Probably b/c i'm used to his normal everyday smiles, which didn't compare at all to his weak, half sedated smiles.

Ryan took the big kids to chuck e cheese while we were at the hospital, so we had to wait 20 minutes while they drove to pick us up. They had this little garden/fountain area at the front of the hospital. So Tate and I hung out here while we waited. I had to hang on to him while I took these pictures, because he was still dizzy from the meds. and top heavy. at least they said he would be for the rest of the day, so I didn't chance it.

While I was at the hospital with Tate I was alone. I had my phone but didn't get any service there. So most of the texts I tried to send didn't go through. I had nothing to do because I left my computer and book in the car. I had lots of random thoughts run through my head and decided to "text" them to myself for memory sake and to give me something to do with my empty arms. I thought I'd type them up all here, so I can delete them out of my "drafts" section on my phone.
Text 1: I hate this. Tate's making cute noises. He's sleepy. Not sleepy enough. He wants to do the ultrasound himself. I keep hoping this is all a bad dream. A bad dream gone terribly wrong, and all I want to do is wake up and have it be over. They keep calling this a "pre op echo". They asked if his surgery was in the next couple days? Ummmm NO! Still having trouble sedating him. He's a fighter. He wants to help.
Text 2: Its beautiful watching his heartbeat on the echo. Makes me tear up. Flashback to watching his heartbeat on the prenatal ultrasound and crying sobs @ the beauty of it. Did I know some how? Did my spirit know some how on some level? Mother's intuition?
Text 3: Did I mention I hate this? Dr. Judd is never here so we won't get the results for a few days. i've thought of asking a different dr. to come tell me the results. They'd probably say no anyway. Can't decide if I'd rather live blissfully unaware for a few more days or do I really want to know now?
Text 4: He's in the spider man room.
Text 5: .9 versed, .6 nubain, 12 Ketamine
Text 6: In recovery now. Tate's sleeping away. Sure now you sleep.
Text 7: I love you Tate.
Text 8: None of this stuff is fun. sitting alone. lost in my thoughts. in recovery. lots of kids here after same day surgeries. Sad. Kids shouldn't have to go through this stuff. I was a lucky kid. Never having to go to the hospital until I had a kid of my own. What if Tate needs surgery? I don't think I can handle it. Can I hire someone to do it for me? Only problem with that is I can't stand to be away from my Tate. I think I'd even try to watch the surgery from those little upstairs rooms they have on Grey's Anatomy. Being in the dark would be nice but worse at the same time. Its almost 3pm, Tate's still out. Nurse here for discharge info. Even though we'll still be here forever it seems.
Text 9: Is this pre op? When's his surgery? They ask these questions so casually. Like its no big deal. Its quite shocking to a parent who's still 110 percent hoping for no surgery.
(See... totally random... don't judge....)

And just to show you.... Here he is today(5/2/09). Happy and eating his normal diet again. Life is good.

We've Got Appointments!!

2009-04-22T20:26:00.000-07:00

Finally today we got the call!!
(Yes, I've been an impatient mother waiting this week for the call from Primary Children's. I even ventured to call them myself yesterday only to be assured they have a system about these sort of things and I just need to wait. They didn't tell me that, they were very sweet with me, but yeah--much better and more organized to wait for them to call.)

Echocardiogram/EKG/Chest X Ray @ Primary Children's Hospital: May 1st, 2009 @ noon

Follow up Appt. w/ Dr. Judd @ EIRMC, in Idaho Falls: June 17, 2009 @ 10:40am.

Updated Info.: Dr. Judd said she'll get the results from all the tests and will call me about three days after... seeing that its on a friday the days probably don't start counting until Monday. So by wednesday the 6th I hope to hear from her w/ the results. Not sure what the "follow up" appt will be about, it'll depend on what she tells me over the phone on the 6th I suppose.

Clinic Appt. w/ Dr. Judd #3

2009-04-15T20:16:00.000-07:00

Today its raining.
Its raining outside. And in my heart its raining.

Today was Tate's third cardiologist check up for his VSD. Going into it I wasn't all that concerned. Thought it would go just like the last two.... Keep doing these check ups and EKGs every few months to make sure his lungs and heart are tolerating the hole.... Leaving with a good diagonosis and feeling hopeful from the Drs. words of hope and encouragement. Thats not how today's visit went.

I discussed Tate's weight dropping down the growth curve (I don't really give it that much thought because Jackson did the exact same thing and he doesn't have a hole in his heart). We also discussed his delayed gross motor development (not sitting up for a long time on his own yet... no crawling yet.... he's 7 1/2 mos. old, this too I haven't given too much thought too because Ryley didn't crawl until she was 10 months old.) So these possible "symptoms" coupled with some other things the dr. witnessed during the check up leads her to believe that Tate's hole might not be closing on its own. She is ordering a "sedated" echocardiogram to be done within the next month (I'm shooting for asap). Her office will call this week to schedule (I hope they call tomorrow). Its down in Salt Lake City, at Primary Children's Hospital. This will tell us if Tate's heart is trying at all to mend itself. They will be looking for any "tissue" growing over the area of the hole. We are hoping for tissue. I got the impression that if there is tissue then they will hold off on surgery and keep the monitoring thing going. But.... if there isn't any tissue (which Dr. Judd was actually leaning towards... at least thats what I got from what she said....) then they'll want to go ahead with the surgery, especially if the hole is what's causing his growth to slow and his gross motor skills to be delaying. If there is no tissue the surgery will be scheduled/performed this summer.

Of course this is one of those "common" procedures, that drs. talk about and act as if its nothing. But when its your baby... your tiny-little-sweet-as-can-be-doesn't-deserve this-baby... no surgery will ever be "common" or "nothing".

I've been fighting back the tears all day. Walking around with this huge lump in throat. Trying to be the "mom". The brave one. The strong one. The one who doesn't give her children any reason to fear or doubt. I've been pleading with my Heavenly Father at every possible opportunity. I talked to him while I did the dishes this afternoon... and while I made dinner this evening. I know he can heal Tate's heart (overnight even) if he wanted to. If it were to be his will. That's not to say that he will. Or even that I think he will. But I know he can.I have given myself tonight while the children sleep to cry.

Ryan and I have been talking about it tonight and he feels the same way I do. Even he has gotten choked up over the news when having to tell friends and family. We are sad for our little man. He's just the sweetest baby you'll ever meet, you'd never know that his body is working harder than it should just to be normal. You'd never know he has a "defect". His smile lights up any room he's ever in. Strangers and acquaintances are drawn to his sweet face and bright smiling eyes. Like I said... just the sweetest baby, not that any baby ever 'deserves' to go through this, but of course I would say mine surely doesn't!

Tomorrow I will put on the happy face again. I will be the mom. I will be brave. I will be strong. I will have faith. I will have hope. I will pray constantly. I will take this road one step at a time. Because I am getting ahead of myself. There are two things on the table that I'm freaking out about at the moment and the second one is a waste of time at this point. Though surgery seems inevitable, it may not be, no sense in getting all worked up over it. So... I will focus on the echo. No biggie. We've done an echo before. This time he'll be sedated. But he'll be in the best children's hospital around.... with people who know what they're doing... with people who do this sort of thing all the time... with people who think of this as "common" and "nothing". I will be strong. I will do this for him. If he needs it... he gets it. I will love this baby more than any baby has ever been loved and I will continue to be so grateful that I get to be his mom.

There is nothing that I wouldn't... couldn't.... do for this little boy. Nothing.

Step One: Be calm. Don't freak out. Do whatever he needs in order to be whole again (with a smile on your face at that.)
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Ps- I'm sorry I know this reads as probably way over-dramtic and "corny", but I was crying for a portion of the writing and its been an emotional roller coaster day.
Pps.- I just want to also add that I know there are a million other children in this world all going through much bigger medical ordeals and their parents have to deal with it right along side of them. I probably seem so whiney and ungrateful. I read tons of blogs touching on far worse situations than Tate's.... I look up to these parents that seem to hold it all together and do what they do in the face of adversity. They are an inspiration and I look at their examples, hoping to be that same kind of parent for my child.

Clinic Appt. w/ Dr. Judd #2

2008-12-10T20:12:00.000-08:00

Today was Tate's 2nd cardio. appt. w/ Dr. Judd. I took him alone this time because they scheduled the appt. for when Ryan was at work. We only had to wait about 15 minutes to see the Dr., whereas last time it took over an hour, so that was nice. They did the EKG again and then the Dr. came in.

Tate was mad about the nurse pulling the stickers from the EKG off of him and it took awhile to calm him down, like ten minutes--then the Dr. was finally able to listen to him. She listened and listened and listened, and she felt for his pulses in his hands and feet. She said by the sound of the murmur now the hole sounds smaller. She said its still a pretty significant size at this point, but that it is closing like its suppose to. She said that since Tate's sweating sometimes when he eats its to be expected b/c of the size of the hole he has. She'd only be concerned if it was during every feeding, which actually it was only randomly and the last time it happened was weeks ago, so I think we're good there. She said the EKG showed that his heart is normal size and he had normal rhythms, and he had good pulses in his hands and feet--all good things. I asked her if holes the size of his (7.5mm) ever close all the way on their own and she said "oh yeah! all the time... most of them, 95%!" So that makes me feel really good. She again said most close by the time they're 5 years old, some take 15 years to close. Tate goes back to see her again in 4 months, of course we'll be hoping for some more good news and reassurance that he's going to be just fine! Thanks everyone for the prayers and thoughts on Tate's behave! I know they're working to help heal his heart!

Clinic Appt. w/ Dr. Judd #1

2008-10-09T20:07:00.000-07:00

Today was an emotionally exhausting day. I feel like I've run a marathon and I've really hardly moved at all (my house is a mess)!
This morning was Tate's first appointment w/ the pediatric cardiologist. Our appointment was at 10:20. Doctor Judd is based in Salt Lake City, Utah and only comes up here every so often (not really sure what her schedule is) so she sees patients at the hospital instead of in an office. Anyway, they had an "emergency" of some sort this morning and it bumped them back and made them over an hour behind schedule. We sat in the waiting room for over an hour and weren't seen until 11:40. I hate hospitals as it is but being so anxious to hear what she was going to say about our Tate made it torture. Finally we were called back. I had to get Tate undressed down to his onesie and then pull that up so they could get to his chest. The nurse stuck about 10 black stickers on varies parts of his body (mostly his chest but also his legs and arms) and then hooked the EKG wires to those stickers. Then she did the EKG which took like 10 seconds, it seriously took her longer to put the wires on him than it did to do the test, which was a nice surprise. I was used to the echocardiogram which took 30-40 minutes. Less than a minute later the cardiologist came in and asked us questions about Tate's behavior.
Does he have trouble breathing? Does it take him a long time to eat (she said more than 40 minutes)? Does his head get sweaty when he eats? Are his hands and feet always cold or do they ever feel warm?Is he extremely fussy?All the answers to those questions were "no". He eats for usually 5 to 10 minutes, his head doesn't get sweaty, his hands and feet are often warm, his breathing never sounds troubled, and he's fussy like a normal baby and usually just right before bed- nothing too crazy.

Doctor Judd said that they give the heart every chance to close on its own. She said most holes will close on their own (oh and apparently Tate has two holes, the larger 7.5mm one that I knew about and then another smaller one in a different location- I can't remember where she said that one was). She said that since he's growing well, has good circulation, he's very active (she said that if there was a problem he'd be a very lazy baby that just lays still, but he was kicking and rolling himself from side to side to look at different things around the room, so she could tell that he was active), and also since the EKG didn't show any hypertension problems (I think thats the word she used??) that they're just going to monitor for a while. Until the hole closes on its own, or until he starts to show signs (all those things mentioned above, if they change those would be warning signs) that something needs to be done. She said that babies grow so fast in the first year that it may just close on its own in that time, we go back in two months to have him checked again. I assume it'll be an every two months sort of thing, unless he takes a turn for the worse. So far, this is a good news. We're feeling really good that the cardiologist seemed hopeful and told us that he's a healthy boy, who for the time being isn't showing any adverse effects from the holes. She also put us more at ease by saying that he's not at risk for a heart attack, turning blue, stopping breathing, or dying suddenly. So its really good to know that, I've been extra worried about the possibility of SIDS with him b/c of the VSD--so maybe now I'll cut back a little and only check to make sure he's breathing and his heart is beating 50 times a day instead of a hundred! lol. (Come on now, all you mothers know you do the same thing... I still do it to Ryley and Jackson in the middle of the night randomly).So there's the super long update... (sorry if its bored you... I want to remember it all and this is my journal)... thanks for all your support and concerns for our Tate.

Results In: Ventricular Septal Defect

2008-09-19T20:04:00.000-07:00

Tate's doctor called me this morning to let me know the results of the echocardiogram he had done on Tuesday morning. Turns out that Tate has what they call a "Ventricular Septal Defect" or "VSD". Basically its a hole in the heart.

The doctor said he's not a cardiologist so he couldn't really tell me much. He is faxing over the results to the cardiologist today to see if its something she wants to see him sooner than October 9th for or if we can wait. I of course had to google VSD as soon as I got off the phone with the doctor. Basically it could go either way, depending on the size of the "hole", it could just be watched and monitored and will close on its own over time. Or it could need surgery. Of course we're hoping and praying that its small enough to close on its own. Heart Surgery is not on the list of things I want for my children.
The dr. said that if Tate becomes breathless, or isn't eating or seems not like himself to take him to the emergency room.
Please keep our little Tate in your thoughts and prayers. We will keep you all updated whenever we know anything new.
If you want to know more about VSD, you can go here, or here, or here.... or you can always google it like I did!

Tate's 3 Week Check Up...

2008-09-16T19:57:00.000-07:00

Today was Tate's 3 week check up. And oh what a check up it was. I was expecting to be in and out, it was just a quick well baby check--shouldn't have taken more than 20 minutes.

Everything was fine and normal until the doctor took a listen to Tate's heart. He thought he heard a pretty loud heart murmur and asked me about it. I hadn't heard anything about a heart murmur from anyone who's listened to his heart in the past, so I told him "not that I've been told about". He left to get the "real" doctor.... (this guy was a physicians assistant... whatever that means?) -- so the doctor came in and listened and agreed that Tate does have a pretty loud heart murmur. They sent me straight up to the hospital to have an echocardiogram (ultrasound on the heart) done on him. Also, they sent me to the lab again to have another bilirubin test done, because he's still quite yellow and its been two weeks since his last check.

So up to the hospital Tate and I went. He had the bilirubin test done first (by a new girl... ugh! poor baby's blood was coming out so slow, it took forever!) and then we went to the echocardiogram room and had the 40 minute long ultrasound done. Tate was hooked up to some wires and had the little ultrasound wand on his chest. He squirmed a little at first, but then ended up falling asleep during the majority of the ultrasound. Of course, he screamed and cried the entire walk out to the car and the drive home.... but he slept right through being prodded w/ the ultrasound wand. So now all the tests have been done and we WAIT!... and we WAIT... and we WAIT...and we WAIT!

The bilirubin test I should hear back on by this afternoon... if not I"ll be calling up there, since they failed to call us two weeks ago w/ the results and I assumed it was because the levels were low and he was fine. That obviously was not the case... someone just dropped the ball. I will not let that happen again, they WILL tell me my baby's levels and if something needs to be done about it.The echocardiogram is being FedEx'd to a hospital in Boise, they will review it and send the results back to our hospital by Thursday... Friday at the latest. So I will be calling the doctor on Friday to see if the results came back in yet. Our peditrician called and got us an appointment with a cardiologist in Idaho Falls, her first available appointment isn't until October 9th, so thats really how long we have to wait to really know anything. I'm hoping they'll give me the report as soon as it comes in, even if we can't go see the cardiologist until the 9th.

So like I said... we WAIT!