Wednesday, February 23, 2011

Home Sweet Home.

We made it home!

It is so nice to be back and seeing Tanner in his own house finally.

Yesterday didn't quite go as planned when I went to go get Kollin from LAX. Of course, I got pretty lost again. I MapQuested the directions to get there, and they told me to go the wrong way! So this time it wasn't my fault.

I ended up in Pasadena, which was the opposite direction I should have been going. I called my dad, and he got me going the right way, and I was able to find it ok. Then on the way back to the Ronald McDonald house, we ended up in Pasadena AGAIN. Somehow we missed the freeway we were supposed to merge onto. Neither of us saw any signs for it! Needless to say, Kollin and I have a hate HATE relationship with California roads right now.

This morning we lounged around a little bit, then got ready to go and wait for the shuttle to pick us up to go to the airport.

We didn't ever end up going back to the hospital to get pictures in our shirts that we got, but that's ok.

We did, however, get the picture by Ronald McDonald that I wanted.

We got through the airport without any issues and the flight was great. Tanner slept the entire time but the landing where he started to get a little fussy. Such a good baby!
We are now home safe and sound. Finally able to relax. Kollin is taking a nap. So is Tanner. I'm thinking of joining in... so tired....

We still have a bunch of doctor appointments to keep checking up on Tanner to make sure that everything stays on the up and up. So it would still be much appreciated to keep us in your thoughts and prayers!

I wanted to thank everyone again that has kept us in their thoughts and prayers. Also for the nurses, doctors and surgeons that looked after our little Tanner. I am so thankful for each and every one of you!

The comments that have been left on this blog and on my FaceBook have really helped me through this tough time. They have lifted me up when I thought I couldn't fall down any further.

I loved reading the comments about those of you that have had similar stories as us, and how your children are doing so well and growing up. It comforted me, and still is comforting me SO much.

Thank you.

Tuesday, February 22, 2011

Follow Up Appointment ~ Passed!

So today was Tanner's follow up appointment at the hospital. I have been pretty nervous about this since we got discharged. If they found anything wrong, or he had any issues, they wouldn't let us go home.

My dad called the other day and said that my Grandma Cannon wanted to help us. He suggested to her that letting us have some of her Frequent Flyer Miles (she's got a ton) to get tickets to fly Kollin out here, and fly us all home would be a huge help. She, of course being the wonderful woman that she is, agreed to do this for us.

We have already gotten our tickets to fly home tomorrow, so I have been crossing my fingers and anything else that can be crossed, and praying that he would pass with flying colors.

We all got the the hospital today (including Kathy) and the dang parking lot was full. So we had to do a quick switcheroo in the car so Kathy could drive to the other parking lot and Tanner and I could go inside to make it to his appointment. We were already running a little late.

I got the screaming little Tanner into his stroller (he did not like being put in his car seat AT ALL), and grabbed the loaner car seat the hospital let us borrow until Kollin brought ours last weekend. Surprisingly, his stroller is easy to push and steer with just one hand luckily.

I have a little friend here helping me type now, so excuse any typos. She is the cutest little Eastern Indian girl named Miah. Her mom just told me she has surgery tomorrow. I am not sure what for since her mom doesn't speak very good English, but it is not her first one. Her little face has a big scar on it and one of her eyes is lower on her face than it should be. So I'm guessing some kind of tumor. Anyway, she's a cutie.

Anyway, we made it up to his appointment just a couple of minutes late. Whew! The nurse got him all checked in and did the normal blood pressure, temperature and weigh in routine. Of course, Tanner got pissed when the thermometer was stuck in his armpit. He said everything is looking great, and he even gained a little weight since we were discharged. Yay!

Then the nurse practitioner came and checked him out some more, took his stitches out,went over some things with me and answered my questions that I had. She was really nice. We had an adventure trying to hold Tanner still while she took out the stitches, be we eventually succeeded. He is very wiggly.

By the end of the appointment, she said that Tanner is looking great and that we are good to go home! I am so relieved that everything here has gone so well and how FAST it all happened. I was not expecting to be going home this soon, or even getting discharged from the hospital as soon as we did.

We have some more appointments at home later this week. We are going to see his Cardiologist on Thursday and then his Pediatrician on Friday. We're going to need to keep following up with them pretty often too to make sure he is still doing well. So we are not completely out of the woods yet, since so many things can still happen. But we are all still hoping and praying that this is it, and there won't be any further surgeries and he can be as normal as possible.

Kollin is flying in tonight, and I am going to go pick him up from the airport again. This time it is LAX. I'm hoping I'll be able to find it ok this time, and nothing like last weekend happens again when I went to go get him from Burbank Airport. My dad knows his way to LAX pretty well, so I'm sure I'll be able to call him if I get lost.

I am still hoping to be able to get the pictures I'm wanting sometime tomorrow before we have to go back to the airport and fly home. We didn't end up doing it last weekend. Just stayed in our room and spent time with Tanner and each other.

Hopefully the next time I update this we will all be home and in our own beds again. Tanner still has never been home yet, and I am so excited to see him in his own room with his own things!

Sunday, February 20, 2011

Weekend at The Ronald McDonald House

Kollin got into town on Friday night! I went and picked him up from the airport and had quite the adventure. I got pretty lost on my way there, but found it. Then we got pretty lost on the way back. Oh well, at least we made it. The streets out here are terrible to navigate!
We spent the entire day in our room on Saturday since it was raining. We wanted to go do something with Tanner, but didn't want to take him out in the weather. We'll probably do the same thing today unless it starts looking a little better.
Tanner is still doing really well. We are so happy that he is holding up and we are finally able to spend some family time together. Kollin got to feed him a couple times yesterday, and snuggle with him a whole bunch.

This morning, Daddy woke up to this...
It was such a Kodak moment, I had to get a picture of it.

Hopefully today before I have to take him back to the airport, we'll be able to get some pictures that I'm really wanting.

We all got matching CHLA shirts (Tanner's is a 2T, the smallest they had, so it will drown him even more than his newborn clothes), and I want to get a picture somewhere at the hospital in them before we all go home.

I also want to get a picture of all of us by the Ronald McDonald figure here at the House before we check out.

I am still trying to update this as much as I can, but they don't have WiFi in the rooms here, and only downstairs in the kitchen area. Since our room is up on the 3rd floor, it's kind of a pain in the rear to come down here just to get on the computer.

We're having a great day so far, and hope you are too!

Thursday, February 17, 2011

Bye Bye CHLA!

Tanner did it! He went an entire day without needing to be put back on oxygen. That meant that we were able to get discharged out of the hospital today!

We slept like this for a few hours this morning. It was so nice and cozy...
And then there was the good old car seat test.
He didn't like it, but passed! Whew!
Today is also the first day that he wore real clothes. Two weeks old, and finally has normal clothes on...
I realized that we didn't have any clothes here for him, and that we were getting discharged so soon. Kollin is bringing them when he comes into town, along with his car seat. So we had to borrow a car seat from the hospital for now, and I found a Ross and went and bought some clothes to hold us over til Daddy gets here.

He probably needs preemie stuff since he's lost weight since he was born, but they didn't have any. Smallest I could find was newborn, and it drowns him! Still so cute though!

And yes, I cried when it hit me that we were really leaving.
We are now all settled into the Ronald McDonald House. We are going to be here until Tuesday when our follow up appointment is at the hospital with a Cardiologist. After that, we get to go home!

Also, Kollin is flying in tomorrow for the weekend. We are soooo excited to see him, and he can't wait to see us.

I'm thinking a trip to Disneyland is in order. At least to the front gates to get a picture to be able to someday look back at all of this and laugh. (Kollin doesn't think it's a good idea since Tanner is still recovering, but we'll see) We'll show Tanner his private plane ride, and his first trip to Disneyland! lol

Wednesday, February 16, 2011

Recovery ~ Day 6

Well, today didn't go quite as expected. We didn't end up getting discharged. This is because Tanner is still having some issues with his oxygen saturation. He has been off of his oxygen all day today though and has being doing great. So hopefully discharge will happen tomorrow.

I don't want to push it though until he is completely ready. Since we are going back to Utah where the elevation is quite different than here, it could cause him more harm than good to go home if he is not stable enough with his oxygen saturation.

Other than this, all of the other updates I am getting from the doctors are very positive and they are happy with his progress.

I have also been able to start nursing him again today. It is so nice, since I can now feed him whenever he is hungry and not have to wait for a nurse to bring me some milk that I have pumped.

They did this last night, and there were times when he would be crying and screaming for almost 30 minutes from being hungry before his "scheduled" feeding. We are now being rebellious, and eating whenever he wants. HA!

So that is pretty much all that went on today. Just playing the waiting game now. But I am more than willing to wait as long as it takes just to make sure he is ok and strong enough to go home without any issues.

Here are some cute pictures that we took today. He is such a little goofball already! Enjoy! Also, excuse my double chin. I was looking down at a weird angle. lol

Tuesday, February 15, 2011

Yay the Floor! eh...

Written 1-27-12

It was pretty exciting getting moved to the floor since it was the last step before getting discharged. There were some nice things about it, and also some not so nice things.

When we first got settled of course I needed to pump again. So I went to the desk and asked where I needed to go. At first I got a little frustrated because they didn't seem to know where to tell me to go or anything. But then they next thing I knew they brought me my own pump right to our room! I was finally able to pump whenever I needed to without having to wait for anyone else. The only problem is we shared a room with another patient and his mom, so I had to figure a way to point myself into a corner and position the curtain just right. Also, the sink in the room to be able to wash my pump stuff was on the side where they were. So sometimes I felt like I was intruding, but other than that? Great!

Speaking of that other patient, he was a very cute little Hispanic boy. Probably 3 or 4. I overheard that all of his internal organs were flipped. So what should have been on the left was on the right and visa versa. So I didn't blame him one bit for constantly whining. But the fact that he was also constantly coughing? Kinda freaked me out and made me wonder why they would have put a baby fresh out of heart surgery in a room with a sick kid.

I asked the nurses about his coughing, if he was sick and if we should be moved to another room. They said they would go check on that. .........??? When they finally came back (a couple hours later) they said he was not contagious and not to worry. Thanks for leaving me high and dry and worrying for the last couple hours though ladies!

After we were on the floor I never left the hospital. The only times I would go back to the Ronald McDonald house to shower and change was if Kathy was with Tanner. I loved being able to stay with him overnight and care for him more. But it also made me very cautious of the staff.

The first night we were there, I heard a baby crying one room away from us for over an hour before anyone went in to check on her. Was she hungry? Was she in pain? Was she just lonely? NO IDEA! After that I was all that much more determined to always have either myself or Kathy with Tanner while we were there.

One kind of fun thing was that Tanner needed an x-ray while we were on the floor. I was expecting that we would be rolled off somewhere to have this done. Nope! Next thing I knew, the x-ray guy was knocking on the door and dragged his huge machine into our room. Awesome! Tanner was able to be x-rayed right in his own room in his own bed. It was so nice.

Recovery ~ Day 5

Our night nurse was finally able to get him to take an entire bottle by himself! No more puking or feeding tube down the nose. W00t!

It looks like all it took was all a matter of a different nipple and keeping him upright for a while after.

Smooches from Grandma Stark... awww :)

After one of the times I fed him, our nurse put him up on my shoulder to burp him. I was so afraid to do this before since I don't want to hurt his little chest. But she said he is fine, and we can burp him that way if we want. It was so nice! He just snuggled into my neck, curled up and fell asleep there for hours. I just haven't gotten a picture of it yet!

They've still been trying to take him off of his oxygen, but he keeps dropping in his saturation numbers, so it gets turned back on.

It has actually been off for the past few hours and he's been going up and down, but staying pretty stable this time. So hopefully he can stay off it this time!

Some really great news today though. He got moved to the floor, which is great. I have a much bigger role in caring for him now, which I love. He doesn't have any wires holding him to machines now, and just a little box that lays in his crib with him that is attached to the monitors stuck on him to monitor his heart beat and other things. It makes it so much easier to be able to pick him up out of bed and hold him!

Also, TANNER GETS DISCHARGED TOMORROW! This doesn't mean we're going home yet though. We have to stay in the Ronald McDonald house until his follow up appointment, THEN we get to go HOME!

As of right now, they are telling me his follow up appointment will be at the beginning of next week. But I am trying to see if I can bump it up to the end of this week. Kollin flies in again on Friday and leaves Sunday. If we are able to just go home with him on Sunday, that would be SO nice.

Of course, it all depends on if Tanner is ready and well enough for the trip. So I am keeping my fingers crossed that we can fly home with Daddy!

Monday, February 14, 2011

Are you kidding me?

Written 1-27-12

Ok, so this one is kind of negative. Just warning you. But it really ticked me off and I can't seem to get it out of my head! So hopefully if I get it in writing I'll let it go... or not. We'll see.

Anyway!

The first night that I was able to hold Tanner was great. The nurse that we had was very good. She was the one that finally let me hold him. The one that showed me that I could burp him on my shoulder without hurting him. The one that figured out how to get him to eat more by switching to a different kind of nipple.

After everything she did that was so positive, there is still one thing that just royally pisses me off. It was the first night that she was our nurse. She was taking care of him and getting his vitals and everything. I was sitting on a chair blogging and Kathy was standing by Tanner's bed watching.

The nurse (I can't remember her name now) and Kathy were chatting and out of no where she asked if she wanted to hold Tanner! I popped my head up from my laptop right as she said this and started to cry and about ready to flip out. I am the mother, shouldn't I be the first one to hold him after not being able to for 3 days?!? (of course I am such a wimp, that was internal dialogue) Luckily Kathy said something along the lines of letting me hold him first and then she would if I was ok with it.

I was so happy that she said something because I still could not believe what that nurse just did and that I would not have been the first one to hold him (besides the nurses). I got all situated in a chair to be able to hold him and was handed my baby for the first time after surgery.

The pictures of this show my crying. To tell the truth, there were two different reasons that I was crying. One, of course, was that I was finally holding my little Tanner again! And the second, was that I was sooooo pissed off at that nurse for what she did.

I never told her or Kathy that was another reason that I was crying. But I sure called Kollin afterwards and told him. He wasn't too happy either. We were trying to think why she would have done that, and the only thing we could really think of was that for some odd reason she possibly thought that Kathy was the mom or that she thought I had already gotten to hold him before that? Other than that, we were stumped.

At least the nurse made up for it with all the other great things she did for Tanner and me.

Recovery ~ Day 4

Last night was the first time I was allowed to hold him since before his surgery. Of course, I cried.

And then we fell asleep.
He has been eating very well on and off. Sometimes he will take his whole bottle, other times he'll only take a little and they have to feed him the rest through the feeding tube in his nose. Either way, I'm happy he is handling food again and getting more nutrients than through his IV.

Today has been a pretty eventful day. He got that fragile IV with the splint taken out, the IV in his shoulder, and also the pacer wires that were in his belly. He has also been taken off of any IV fluids and all of his medications are being given to him orally now.

That means we are that much closer to going to the floor and out of the CTICU, which means that much closer to going home! They are saying he may be going to the floor tomorrow or the next day. I cannot believe how well he is doing, and how quickly this is going! What a little trooper.

The last time I fed him, he didn't take very much through his bottle, and we gave the rest through his nose. Apparently it was given too fast, and he puked it all up a couple minutes later. Oops!

So I have to wash his blanket that Aunt Corey gave to him again. That thing is going to get some good wear and tear while we're here!

He got a bath and all washed off after, and looked so cute just snuggled up in his bed.
Just a little bit ago, they switched him out of the bed that he was in, into an actual crib. As we were making the switch, his nurse did a check up on him.

Every time he gets his temperature taken, he flips out! Most of the other check up he is just fine, he just does not like getting that thermometer stuck into his arm pit. As you can see, he turns all red and cries like crazy. Silly kid.
Now he is looking as snug as a bug in a rug in his new crib. He looks so tiny in this crib compared to his other bed.
So cute!

Sunday, February 13, 2011

Recovery ~ Day 3

Today is a little bit of a bitter sweet day. Tanner is still doing awesomely well. But Kollin, my dad and Gwen all flew home today. So I am once again a crying basket case for not having my Kollin here with me until next weekend. It was so nice to have him here though, even if it was for such a short time!

We miss you already Daddy!

Anyway, today Tanner has been making more improvements. They are lowering him off of more heart medications and other things that I can't remember what they are or what they do. All I know is that he doesn't have as many pumps putting stuff into his little body.

The medication that helped to produce more urine apparently worked VERY well. He is actually getting a little dry, and he is peeing so much, they are having to replace some of his electrolytes to compensate. He has also been peeing so much, he soaked completely though his blanket that Aunt Corey made for him, so I have to go get it washed so we can use it again! That's my over achiever for ya!

We were able to start bottle feeding him again today. When they first tried early this morning, he wasn't coordinated enough to suck so the nurse push it. My dad and Gwen came to see him before they all had to leave, and Gwen helped him with his bink and worked on teaching him how to suck again. It was so cute!

A few hours later the nurse was able to get him to eat a little. A few hours after that, Kollin got him to eat even more.

Then a few hours after that, I was able to get him to eat a little, but not as much as Kollin was able to. I don't know how he does it! He has always been able to get Tanner to eat more than anyone else can. Too bad he is gone now!


And of course I got to clean up after him...

Also today we were able to remove the oxygen from his face since he has been breathing pretty well. So he looked normal without anything on his face for a little while! (cept all the red from where the tape was)
This didn't last too long though. His oxygen level kept dropping for a while so they decided to put it back on. Oh well. No biggie.

They were also getting a little worried about his blood pressure and heart beat. His blood pressure was really low, which is where they want it right now while he heals. But his heart beat was a little raised.

They gave him some liquids by IV to see if that would help. It did, but not for long. One of the doctors then decided to give him a quick echo to see if everything was in working order and if something may be wrong inside.

Everything looks great! So apparently, there isn't anything to worry about.

The doctor that did the echo was also very surprised that he was throwing a fit just before the echo, but a couple minutes into it, he fell right asleep. She couldn't understand why he likes it so much. Usually babies will not put up with getting that cold gel on them and having the ultrasound probe all over their body.

Tanner on the other hand looks like he loves it, and that it soothes him for some odd reason. I suggested they should keep the echo machine parked by his crib, and whenever he starts crying to just start probing at him to get him to calm down.

She thought it was a pretty good idea, but still took it away when she was done. Darn!

Now it is just Kathy (Kollin's mom) and me here. I am so glad that everyone has been able to come out here to help support us, and so I don't have to be all alone.

I am now watching Kathy as she is trying to get him to take his bink and keep his hand away from his face.

In the pictures, you can probably see that one of his arms has a big splint on it. It is because the line they have going into that arm is pretty fragile, and it is for measuring his blood pressure and when they take blood to test stuff.

At the moment, he is trying to suck his thumb on that hand and keeps whacking his face with the splint. It's pretty cute watching her fuss over him. Such a cute grandma!

Saturday, February 12, 2011

Breathing with some Phantom

Written 1-27-12

One thing I forgot to mention was when the Respiratory Therapist (he is the one guy who's name I didn't get! doh!) was working on Tanner, taking his breathing tube and feeding tube out and adjusting his oxygen, he was humming Phantom of the Opera songs to him.

He would hum "Think of Me" and "All I Ask of You" to him and it made my heart just melt.

I don't ever want to forget that, and I can still remember his soothing humming voice.

Recovery ~ Day 2

Daddy got into town last night! Yay! He was so excited to see Tanner and me. He was a little nervous to see him with all the tubes and scar, but he said it actually looked better than he was thinking.

They tried to take him down from completely assisted breathing last night to just pressure support. This is when he is pretty much forced to breath on his own, and if he goes too long without taking a breath, then the machine will kick on and breath for him.

It didn't work too well. He was letting the machine still breath for him too much, so they backed off and switched the machine back on full time to let him rest some more. That's ok though. Nothing wrong with that at all.

This morning when we got to the hospital, they said that they ended up being able to put him on pressure support at about 5 in the morning or something and he was handling it much better and doing great!

Next step is to get that dang breathing tube out!

His poofyness is also pretty much completely gone. He is finally back down to my skinny little baby.

Kollin and I went out for a walk, and when we came back he was awake! It was the first time that I had seen him with his eyes open since before surgery. It was so stinkin' cute to see him looking around at everything. I could tell he was uncomfortable because of the breathing tube, but we still had to keep it in for a little while longer to make sure he was ok to breath on his own.

Eventually, the Nurse Practitioner came in and was able to remove his chest tube! Woo hoo!

Shortly after that, our nurse removed his catheter! Boo ya!

Then shortly after that, his Respiratory Therapist came in and removed his breathing tube and feeding tube! Yay yay!

Now he is looking more and more normal without all that stuff taped to his face and tubes coming out of his chest and diaper. Also, within a few hours, we will be able to start feeding him again. Only thing is, I have to start changing his diaper again.... oh well! I'll take it!



He doesn't have a voice right now because of this throat being irritated by the breathing tube. It is so sad to see him cry, but no sound come out. It sure is cute though since he has been a vegetable for the last couple days, I am just ecstatic to see him moving, opening his eyes, and crying.

Our nurse asked if he likes to be swaddled, and I told him that he loves it. Whenever he is throwing a fit, as soon as we wrap him up, he zonks right out.

So I finally have the opportunity to use the new receiving blanket that his AuntCorey made for him and sent with Kollin.
Well, that is everything I have for now. The next steps are to take some of his IV's away, and we will be able to start holding him again. Hopefully this will happen soon!

Friday, February 11, 2011

Recovery ~ Day 1

Tanner is doing really well today from what I am being told. He has a whole bunch of tubes and wires coming out of him, but he should be getting some of them taken away today.

The first bit of good news that I got when I got to the hospital today is that he passed the MRSA test, so we don't have to wear gloves and gowns to be near him anymore! Yay!!

They have given him a couple of doses of morphine for pain, and the doctors are saying that he doesn't really need something that strong, and to see if we can ween him off of it to something better. If he does well on this other medicine, we may be able to remove his breathing tube sometime today, and may even start to feed him again tonight!

This is pretty good news, since I wasn't expecting the breathing tube to come out for at least a few days, and not be able to start feeding him for a few days after that. Of course, it all depends on how he handles everything, so I am not expecting much until it actually happens.

A funny thing is, his nurse keeps trying to position him in ways that should be more comfortable for him to be laying. But as soon as she does, he squirms and moves to another weird position. Guess he takes after his mommy in being able to fall asleep in any position!
He is looking really puffy right now, so they have given him some medication to help him produce more urine. So far it is working. He needs to hurry up and pee a bunch though! I want my skinny little baby back!
His face, eyes, ands and feet are so swollen right now, it's making him look funny. But oh well. That was to be expected, and I know it will slowly but surely get better.

Thursday, February 10, 2011

My Gift from God, Given to Me Again.

I received word that he was out of surgery and being taken into recovery. They said I could come meet him in the hallway as he rolled by to give him a kiss. So that is exactly what I did. I was walking so fast down the hallway, my dad even commented on how fast I was going especially since I NEVER walk fast than my dad. (his legs are about twice as long as mine)

I was able to catch them and see my baby! He looks great! He has color in his face, which I was not expecting. I was expecting him to be white as a sheet. His little cheeks are a little rosy, and the rest of his face looks pale, but peachy.
Dr. Starnes (the surgeon), came and spoke with me and said that everything went very well. He was able to do the surgery the way that we were hoping, and will not need anymore surgeries. They were even able to close up his chest, instead of leaving it open like we were told may have to happen depending on fluids and swelling. (Kollin is VERY relieved to hear this one)
So YAY! My little guy passed with flying colors! Now we just need to pray for a fast and good recovery!
Thank you to EVERYONE that has been thinking of Tanner and our family during this, terrible time. I am hoping that we can look back at this and be stronger because of it, and be able to share our story with other families like so many of you have shared with me about your little ones that have gone through similar ordeals.

I will keep updating on the recovery and everything else. So please keep us in your thoughts and prayers.

Thank you again and again and again and again..........!

In Progress

Written 1-27-12

During Tanner's surgery my parents did a great job of trying to keep me distracted and not freak out too much. They said they would call me on my cel with updates and when everything was done.

Just after he was taken away my dad and I went downstairs to the lobby and found Gwen. Only two visitors were allowed in the CTICU at a time, so we had to shuffle a lot. We found her and sat down. I called Kollin to let him know that our little boy was in the surgeon's hands now. I couldn't handle it anymore. I started to break down and collapsed into my dad's lap.

I remember laying there and getting tears all over the leg of my dad's pants as I was bawling into the phone to Kollin. I think I stayed on the phone with Kollin for a good 10 minutes or so with him just listening to me cry and trying to comfort me. I don't know how he was able to keep himself composed, although I know he was at work and was trying his best not to think about it and break down himself.

After I was finally able to compose myself enough, my dad and Gwen took me to the hospital cafeteria to try to get something to eat. I don't think I was able to eat all of what I got, but I remember being surprised that I was able to eat at all.

After we ate I was in such a daze I can't remember if we did anything else or just went up to the visitor's lounge and sat in there until we got the call that he was done.

I remember at some points I did get phone calls letting me know that surgery was started and what different procedures had been done. At some point I just gave the phone to my dad because I just couldn't fit anything else in my brain at that point and he could translate for me easier anyway.

My dad told me that the surgeon did some part of the surgery (now that I'm thinking about it, of course I can't remember what part) in 20 minutes. Apparently this was impressive because he told me that he was very amazed with all of the intricate things the surgeon was able to do in just that amount of time when he can't even suture a finger in 20 minutes. At least that got me to smile.

Gwen had also found out at some point that Tanner's surgeon had also done a heart proceedure on Arnold Schwarzenegger about 7 years or so before! I thought that was pretty interesting and have always said that if Dr. Starnes (love him by the way) is good enough for the Govinator, then he is good enough for my baby!

A Letter to Tanner


Dear Tanner,

Well, here we are in California to get your little heart fixed so you can grow up to be a big boy. The doctors just came and took you away from me to do this surgery. I have been with you this entire time, and am still with you when you are away from me in their good and talented hands. Daddy is going to be here tomorrow! Daddy had to stay home and work so we can have a home to go home to once this is all over.
I am so scared right now, I don't know what to do other than write you this letter of how much you already mean to me and that I love you.
I know I've only known you for a week now, but I have been waiting for you for so long. I could not imagine my life without you already. You are such an angel baby, and I finally have something that is MINE. Related to me by blood. My biological family. I have never had this before.

Don't get me wrong though, my family is the bestest family that you could ever ask for, and I am so happy and proud that I am adopted, and was adopted by MY family. It is just a whole different ball of wax to have someone that actually resembles me and has come from me.

Dr. Starnes (your surgeon), seems like a very good man. He came and talked to me before they took you away, when I had been told that he wouldn't be. It was so nice of him to come and talk to me, even if it was for just a couple minutes. He said that he is 80% sure that he will be able to do the surgery that we are all hoping for, and that your aortic arch is large enough to be able to repair. And only 20% that he may have to do the other surgery that we do not want. But of course, he will not know until he can actually see everything.

I can't write very much more right now before I have a complete break down. But just know that both Daddy and Mommy love you so so so sooo much. We are waiting for you to come back to us. Please be a good boy to the nice doctors that are going to fix you so you can stay with Daddy and me.
There are so many people thinking and praying for you and our little family right now, it is so amazing what our wonderful families and the internet can do! Lots of people care about you that haven't even met you or me. Please be ok and come back to me.

And make sure they are fast! I don't know how long I can wait! (but not too fast to not do the best job that they can)

xoxo
mommy

Wednesday, February 9, 2011

Blessings

Written 4-1-2012

After everything had calmed down and everyone was settled at CHLA I asked my dad to give Tanner another blessing before his surgery.

I was holding Tanner in my arms and sitting in a chair. My dad knelt down in front of us and place his hands on his head.

Again, I bawled through it. I remember it being such a sweet blessing.

Later that evening there was a Pastor (or something... I don't know what denomination he was and I don't know all the terms, sorry) that came and visited us. He was so nice and offered me his support. He let me know where the chapel in the hospital was and also offered if I wanted to arrange for Tanner to have a blessing.

I told him that my dad had already given him a blessing. He seemed surprised that my dad was able to do it and wondered what our religion and what his calling in the church was to be able to give blessings. I told him we were LDS and he seemed very curious about it and that he honestly didn't know much, if anything, about it.

Luckily my dad was still there with me and he was able to talk more in depth about the LDS religion.

While they were speaking I remember thinking how grateful I was that any man that holds the Priesthood in our religion is able to give a blessing to someone in need of it. That I never realized how available it has always been to me.

Pumping Troubles

Written 1-27-12

Shortly after I got to CHLA with Tanner, I really needed to go and pump.  To put it lightly, my boobs were so engorged they were killing me after that long flight!

So the nurse that was assigned to Tanner showed me around quickly on what I needed to do to go and pump milk for him and get it stored.

Here are the steps I had to take, and why I love Primary's SO much more!

Step 1: Go to the main desk in the CTICU (the unit Tanner was in) and ask for the "pump key."
~ what?? That was my first thought that this was going to get rediculous.
Step 2: Once you get the pump key (sometimes it took a little bit of tracking down), go out the big double doors to get out of the unit, down a few hallways, around more corners into the "visitors' lounge."
~ The pump room at Primary's was IN the CICU. And if that one was busy, there were other actual "pump rooms" that could be easily found.
Step 3: One of the overnight rooms for parents to reserve the day of to stay in overnight is a make shift pump room. Unlock the door with the key and go in and pump.
~ ha. Ya right. The first time I tried to go in while the nurse was showing me around there was already someone in there. Even the nurse was stunned on how they got in. The husband came to the door (with an attitude no less) and said that another unit said for them to come to this room, and if it was unlocked then to just use it. (so that just made the pump key irrelivent!)
~Also, that same couple (with attitude included) were in that room probably about half the times I tried to go and use the pump. I ended up finding a spare pump somehow and pumping in the visitors' bathroom no less. Ew.
~ And that make shift pump room was always gross from whoever used it for the overnight room.
Step 4: Take your pumped milk back to the nurse that is watching your baby and ask them go and put it in the freezer.
~ At Primary's we could just go put our milk in the freezer ourselves. Each baby was assigned a little tub to put the milk in so it wouldn't get mixed up with other babies'.
~At CHLA, I didn't have access to the freezer and felt like I was making the nurse go out of their way to go and put it away. There were even times I had to ask them a few different times to put it away because they kept forgetting.

That is one more entire reason I hate it here. It's not like I don't need to deal with anymore stress!

Gloves and Gown

Written 1-27-12

The reason we had to wear the gloves and gowns was because they do a MRSA test on all new patients. It doesn't matter where the patient is coming from or if they have some reason to think they would have it. They do it for all patients. And until they get the results of the test back and it is passed, the gloves and gowns have to be worn. blah

Draw! ....or not?

Written 1-27-12

After we got back to the hospital and allowed into the CTICU to see Tanner, my dad wanted to see if someone could explain the surgery options to me again in person since it was not easy to understand over the phone.

We spoke with a very nice lady (I can't remember exactly what she was... doctor, nurse, NP?) and asked her if she could explain everything to me again of what they are planning to do, and possibly draw me a picture like they did at Primary's.

She started explaining the surgery to me and I had to stop her because everything was going in one ear and out the other because I was already on information overload and couldn't comprehend anymore. My dad asked again if she could draw a simple picture so I could have it to look at when I was a little more coherent.

At that point she kind of looked at us like we were idiots and why did we want her to draw a picture? She said she wouldn't draw a picture, but would try to look something up on the computer to print up for me.

After a long time she finally came back with a few different papers. All of them with very intricate heart images on them. She said she couldn't find any images of exactly what they are doing, so she just pointed to the different parts and told me what their plan was. She didn't actually mark anything on the pages, so I couldn't refer back to them at a later time if I wasn't able to remember. So all of that was completely pointless.

Everyone was actually pretty surprised that I was picking up as much hospital lingo as I was in such a short amount of time. But that was only after I had a chance to relax a little bit and actually wrap my brain around everything.

Other than that, I am just so glad I had my parents there to translate and remember things for me.

Stressed Out in LA

Well, we finally made it to LA today. I was able to be transported with Tanner, which was a huge bonus and relief. We took a tiny little plane, which was pretty cool, but really scary as we came in to land. Small planes are bumpy!
When we got to the hospital, they started messing with Tanner and wouldn't let me near him while they were getting him settled. They then told me that I can only go close to him if I am wearing a gown and GLOVES. If I wasn't already bawling from hearing my baby scream and cry from them transferring him from the Life Flight people to the hospital bed, that just got me going even worse. I can't touch him skin to skin. There has to be a stupid blue glove between us.
He also is sharing a room with 3 other patients. In Primary's, he had his own room. One of these patients was just getting out of surgery about an hour or so after we finally got Tanner settled into his bed. So they kicked me out. I figured that worked, since I still had to get checked into the Ronald McDonald house.

My room is awesome by the way. That is about the only good thing that has happened all day since I've been here it seems...

While I was checking in, I got a phone call from one of the surgeons to go over the consent stuff to do surgery tomorrow. As she was going over the risks and everything I was pretty much ok. I have been expecting this stuff. But when she got to the part that once they get in there, and it is different than they were expecting, what their back up plan is... that freaked me out.

We are once again on the subject about his aortic arch being too small. If it ends up being too small to be able to repair, they will treat the heart as if it only has a single ventricle, and connecting the pulmonary artery with the aorta as one. And then using a shunt. I'm sure I missed a bunch of the details in there, but that's pretty much it.
But then, that is still just a back up plan, and may not even happen if his aorta is large enough to be able to repair the way they are originally planning. So with that being said, everyone please pray and hope and do whatever you do for his aorta!

Other things that are piling on top of all of this, is when I went back to see him, apparently one of the patients in his room is having issues, and they are performing a procedure on them. So I am STILL not allowed in there.
I have not been allowed to see my baby since about 4:30 pm, and it is now almost 8:30 pm. I have gone back a couple times to see if I can go in yet, and the nurses have gotten to the point that they told me they will just call me when I can go in. I take it I'm getting annoying...

But come on! My baby is going into surgery TOMORROW (I still don't even know what time by the way), and all I want to do is spend as much time with him and hold him as much as possible until then.

That's all I ask. But no.

Anyway, sorry about my little rant. I hate it here, and wish we were still at Primary's. I miss Kollin, and I am just getting more and more pissed off and emotional about not being able to see Tanner.

Sorry that all you get out of this update is negativity, but that's all I've got right now. I just need some good news for once, instead of things just getting worse and worse.

WOW! I just got a call from Tanner's nurse saying I can go up. Bye!