my new thing!

heres my new blog... its a picture project.
http://tannas365project.blogspot.com

Merry Christmas!!!!

Our very First Christmas spent at home, as a family! With an amazing year behind us, we say a very heartfelt thankyou to the donor family. May the future be Merry and Bright!

someone asked me....

What I love about my kid.... (its a forum thing)

this was my answer.

I love how awesome Yale is. He's cool, and he knows it. LOL. he has his dad's charisma, thats for sure. th guy doesn't even have many words yet, but like dad, can have you laughing and at ease at the worst times! lol.

Oh and of course I love how strong he is. I live with the definition of a fighter. and the best part is, the little part of the world he got to see, he felt was worth it! he's fought for every single second of his life, and now that he feels well, he's living it! he's up to do anything... never holds back, is very rarely shy, and always smiling.

What do you love about your kids?

Yale growing up

So Yale's OT and I have been working on his feeding issues. I just took this video of him so that she could actually see him eat, since he only wants to play during visits. Check it out.

Random Act of Kindness

A friend of mine has started a group for what I have wanted to do in honor of Yale's Donor and Donor Family. December 10th I've suggested we all do some little kind things for strangers, in honor of the HUGE thing the donors did for us! Please join and invite everyone you know to join too! Its the least we can do! and we can get some good karma flowing. Oh and don't forget if you don't know something you can do... you cal always sign up to become an organ donor and don't forget to tell your loved ones!

Thanks so much!

If you click on the title of this post, it'll take you to the group facebook page!

delayed updates

I am soooooo bad for them... LOL

Just wanted to update on Yale's biopsy and svc stenting. all went well.... they decided against Yale's stenting since (in the words of DR Cheterveti [sp?]) "there was more risk in stenting than just leaving it. We could push lots of dye through so its nice and open. minor narrowing on the heart side but the svc is fine."

So ya... that meant... you guessed it... we got to go home... no overnight stay! YIPPIE DO DAH!

LOL

and halloween came and passed... what do you think Yale was?

SVC stenting

Hello fellow bloggers! Just wanted to come here and do an update....since its been FOREVER since I have. Yale is doing well... we have some uneplained vomiting but since I've limited the fluid volumes at a time its definitely decreased to once a day.... Yale has an appointment in the cath lab for this upcoming Wednesday Oct 21. He's having a biopsy as well as an SVC stenting... generally a pretty straight forward procedure as long as Yale cooperates... hopefully the most difficult part is getting IV access.... as usual. I'll quickly explain SVC stenting for those who are not cardiologist, cardiac nurses, and heart moms... :) The Superior Vena Cava (SVC) is the major route of blood return from the upper body and head to the heart. When Yale had his Glenn procedure they moved this vein from draining into the right side of the heart to drain directly into his pulomonary veins.... thus bypassing the need for two ventricles...(since he only had one!) Anyhoo, then when it came time to put a new healthy heart into his chest they had to bring it back to drain into the right side of his heart (which then pumps it to the lungs) and as well all know about scar tissue it rarely if ever grows.... so where his SVC was connected to his heart is still quite narrow... So they are going to go in and put a little piece of metal mesh tubing into that area and baloon it out so it holds the opening larger. The metal will be there for the rest of his time with this heart... ;) so no more MRI's... So there you go... a minor cardiac lesson for you all...

Anyhoo Yale is doing great otherwise.... we had a visit for two weeks at Grandma's house in New Liskeard.... although we didn't get as much visiting in as I had hoped (I'm lazy and quite the shy person) we did get to see both sides of the family :) Yale perfected his walking while up north with quite a few bumps and bruises....but has it down pat now! His talking is still merely jargon so we have an apointment with TykeTalk booked for this november (3 yr anniversary of the loss of the twins to be exact) and hopefully they'll give me some more ideas on how to get more words out of the guy.... and yesterday I gave him his very first haircut..(technically not his first since he has had a few shaves for scalp IVs..) I did it myself and think it was a success...and now he REALLY looks like dad... if it was possible to do anymore than normal..

Anyhoo I'll attach a couple pics so you can see him growing :)

With Grandma and Grandpa Seaton

New hair cut

With Uncle Jeff's giant pumpkin at Aunt Erica's house!

pneumonia

Okay I thought I would update now that all is said and done. We had our first hospital admission since yale's heart transplant. I brought Yale into emerge on wednesday because I could definitely tell that he was working much harder to breathe, as well as bouts of lethargy. I could feel his little belly heaving when I would have him in the carrier. So as you could guess I was quite nervous when they brought the echo machine to check him out. Luckily it was not his heart and I was reassured his heart is working well. So with that fear aside I was ready to face whatever it was. to put it in the words of the resident his chest xray looked "junky" so they decided to admit him for pnumonia. Yale's sats were in the high 70's when admitted, and after some long screaming and choking during his xray he seemed to clear some of the gunk out because he could maintain higher sats for 15 minutes here and 20 minutes there.
After a talk with sick kids it was determined that Yale was to have a round of antibiotics IV for at least 3 and then oral. Well Yale didn't agree with that in having 11 pokes to try and get an IV he ended up with a line in his scalp, which he proceeded to pull out the next day. then another 7 pokes to try and get another line the doctors decided because they cannot get access on him, that he would have IM antibiotics... (in the muscle) as well as oral to cover the bases they would have had he been able to get them via IV. Yale slowly progressed to get higher O2 saturations thanks to loads of chest physio from me. I wanted him OUT of that hospital so during the day I did physio every few hours...
Finally we were allowed to come home on day 4 of his stay after much discussion with the team. Yale continued to have dips into the mid 80's and they didn't want to let him go. Luckily after calling sick kids Dr D said to let us go. Phew. So now we're at home...still doing chest physio until his work of breathing is much lower.... he still gets a few coughs out now and then...but we are all much happier to be home now.

Wow... I'm terrible....

at keeping up to date on this blog...SORRY!!!!

So a quick update with Yale. We had clinic on Thursday the 23rd and biopsy on Friday. Yale did well at clinic ad we don't have to go back for two months. He has a sore in his mouth that appears to be healing, but will for sure take some time. So we'll be keeping an eye on that. Yale did well in his biopsy. We've learned that he still has zero rejection even after almost three weeks off of one of his antirejection meds. After some discussion his team had decided to drop that med all together! something quite unheard of... but very exciting! Yale will have his next biopsy in three months (a little sooner than usual becuase of the dropped meds) and at that time he will have his SVC stented.

So here is a few pictures to show you how littleman is growing up! He's able to take about three steps on his own now. Although he gets mad when we make him do it. LOL a week or two ago we took Yale to storybook gardens for the first time here in London. this will definitely be a place warranting a seasonal pass for Yale in the next few years. I used to dream about places like this to play at when I was growing up! and for $30 for the season, who would pass that up?

Picture post

So my sister Erica was here this past weekend. She was inspired by a little guy by the name of cameron sky villa... the toddler artist. His paintings sell for upwards of $500 dollars. Well, Erica is the resident artist in our family... well the next generation I guess, and she wanted to inspire Yale, one of the future artists...


















The finished piece.


Here is one of the many videos of Cameron on youtube! Be sure to inspire your children's creativity... its an awesome experience!

wait for it....

There it is... that nice calm exhale... *phew*

We are living in the exhale. The calm sweet easy part of life. I spend my days doing nothing really, just watching Yale grow up. How great is that? I know not many of us will admit it, or really talk about it, but it has to be said. Heart moms are constantly worried that their babies will die. Its really a hard concept to grasp, but its quite true. When you think about worry in the normal sense, like you are worrying about paying bills, or what to eat for supper, those worries aren't 24/7. You can get distracted from bills... Heart moms worry their babies are going to die. 24/7. It never stops. When I think back to what it was like with Yale from his birth to the day he got his heart transplant, I probably let go of that worry for a total of two weeks... the two weeks after his glenn before the function problems came around. It was tiring, and burdensome and really a horrible way to live.
Today I played with Yale and I put him down for his nap SURE he will be there when I go to get him when he wakes up. No longer do I worry he may never wake up from this nap.
I was visiting Jen and Gabe in the PCCU.... laughing with her about how wierd it is to not know how many diapers Yale makes on a daily basis. I used to be obsessed with pee. Is yale peeing? how much is he peeing? It was the number one sign I watched for to be sure of his health. Everytime he was flown to sick kids or admitted to sick kids or LHSC, it all began with less pee. Today, I have no freaking idea how much the kid pees... Thats right... i've stopped being the hyper vigilant heart mom.
I hate to say these things out loud, worried about jinxing them.... but right now.. I have to say, I'm fairly confident Yale will be around for a while. Its true. I know they warn us that this is just switching one set of health issues for another, but man oh MAN.... am I ever happy with this set of worries... I sleep at night. Yale might cough through the night.... and I just listen. I don't get up and go into his room and turn on the light to watch his color.... thats over now.

Yale has taken to babbling and using his hands to make big animated gestures when hes talking about something exciting to him.... My kid is growing up. I'm sure every mom will agree with me, pretty much when you learn you are with child, you dream and imagine the whole length of a life with a new child. watching them do everything you did again for the first time. When I got Yale's heart diagnosis, I stopped. They wanted me to kill my baby, or he would be lucky to live to be one year old. I've started dreaming again.... about Yale's first day of school, and sporting events, and teasing him when his voice cracks during puberty... we have our lives back.

I really hate that we cannot have contact with the donor families. I mean we are welcomed to write correspondence back and forth. but its through trillium, and we cannot use names or have any means of getting into contact with one another. I really REALLY wish Yale's donor family could watch this blog. see what they have done for complete strangers. WOW... what a blessing and gift that family is! I plan to keep this blog going as long as blogger is going... and i'm actually contemplating putting each year of posts into books for Yale... the book of Yale... as told from mom... Wow... I'm sorry and I know this post is really rambly and confusing... but really... I just had a lot of feelings I had to get out and share.... and maybe seeing this one person will decide to be a donor. Look at how much can happen... and I know for a FACT Yale's life wasn't the only life that was saved that day!

Just an update!

So Yale had clinic in Toronto on thursday April 30th. it was uneventful as usual (its a new usual, but one I'm getting used to) But I just wanted to clarify for everyone about Yale's lung issues. as previously stated, his left lung has basically no blood flow to it. This was clarified that the lung is actually being perfused and can grow as Yale does, but he doesn't get oxygen from its use. The main worry was with 90 of the blood flow going to his right lung, that it would be straining the right side of the heart. Thats what they went into the cath lab looking at. They found the pressures to be well in the range of what they would consider normal. These pressures will be checked continually during biopsies, however, if he his capable to handle the unbalanced flow already, he will only get more and more used to it. Dr K said basically this will have no effect on Yale or his development, unless he has hopes of being a professional athlete, to which dad replied, "you don't need great lungs to be a great golfer!"

So thats our little update. Funny how it has a good spin on it? I think thats how things might be from now on. Well I can only hope!

sorry its been a while

I meant to update this blog once I found out more about the results of Yale's cath to look at the pressures of his lungs, and the blood flow to his left lung. I really don't have much information really. Dr Redington told us after the cath, that there was no need for intervention at this time. But what it all means in the long run, I have yet to ask my questions. However, Yale has 0 rejection, and his next biosy is scheduled for July 24th. Mirna just told me that they'd watch his pressures every time he has a biopsy to make sure nothing reached panic levels. i take my cue from the professionals, and if they're not worried, I'm not.

On a nother note Yale has been progressing and developing at an even faster speed. Its almost as if his physio therapist comes in, tells us what the next things for his development will be, he hears her, and does it all within the day. Its hard to think Yale was very much still an infant only 4 months ago. his gross motor was only at around 6 months, and now he is almost all caught up. if he learns to cruise in the next month he'd be back on schedule. The later side of schedule, but still in the range of normal. Its amazing to see him standing for long periods of time without any assistance. He has yet to really take steps, but I'm sure it'll happen before the week is out...

Now onto the prayers.... a good friend of ours is back in the CCU.... little Abby Knight has a viral lung infection. She was wtih us in the CCU when Yale has his glen. She is scheduled to have her glenn soon, but now they'll pretty much be living in Sick Kids until she can fight off this virus, then in for her glen. (edit: Abby is now home, glen has been pushed back until she is stronger)
Owen Veloso... who has has a scarier road than Yale is going in for his glen on Tuesday. This little guy FIGHTS for his life, and I think some prayers would be greatly appreciated!
And of course, little Lillian who is still waiting at Sick Kids for her heart.
And never could we forget Sophia, who is still waiting, but is finally in an apartment in toronto. Some sense of normalcy must be great for them, but I'm sure Sophia's new heart and a flight back to New Brunswick would be even nicer!

thanks everyone! we know these positive vibes and prayers really do help!

impromtu trips to the cath lab

Well... the shoe has dropped. Luckily, we've been through worse, but I've just recieved a phone call from Dr D. Yale is going into the cath lab this Thursday. When they were in there last week they noticed high pressures in his left lung, and Dr C tried some dialation with little to no results. This is something we've known about ever since Yale's transplant. unforunately its gotten much worse. Sooooo, Yale is going to go for an MRI Thursday morning, than straight to cath lab afterwards. They are first going to see if some medicines can help to dialate the veins going to the heart, and increase the blood flow both to the lung and back from the lung to the heart. If not then they hope to be able to do some dialation and stenting. It was frightening when Dr Dipchande said that they were going to do all they could to salvage Yale's left lung, but if not, she has about 10 transplants that a living with one lung. Very frightening indeed, but we've been through so much, this is just another challenge for us.
So prayers are requested that the flow isn't totally compromised, and that Yale's lung can be slavaged.
I'll update as soon as we know.

edit for lexi

It was just a bruised brain, not a stroke. Still not good, but at least a bruise can heal. What a little bugger she is, like she hasn't scared her parents enough!

Slacking off

Okay everyone, I know I have totally been slacking off with this whole blog.... but really... there isn't all the much to report :) We've officially made it THREE MONTHS with out an admission.... Yale is doing great. We've been working with Occupational Therapy to help him with his development.... its going wonderfully.... When Melissa first came, Yale wouldn't lay on his belly and he could move or do anything and could very sporadically sit unassisted.... now he is rolling all over the place and will be crawling any day now. He continues to get up onto all fours and rock so I know its only a matter of time! And my favorite milestone that I've been itching for is.... drumroll please... Yale can now hold his own bottle!!!!! Wow... I never thought it was going to happen.

So Yale has a biopsy at the end of March...and then if everything goes well, we'll be down to monthly visits to Toronto.

Anyhoo, I've really noticed that this blog and all you readers, have really helped when I've asked for prayers and positive thoughts. Well, As some of you may know, a friend of ours, Sophia Bossenberry is still awaiting a heart transplant. Her and her parents have quickly approached the one year wait while being in the hospital. This sounds extremely terrible, but i think Sophia's wait has only been so long because of how well she is right now. As all of us know, that can change in an instant. So I'm going to ask all of you that you please pray for Sophia's heart to come and for her and her wonderful family to please get back to some semblance of normalcy.

Update: Lexi was home and doing great with her parents, but I have just learned she was life flighted to Sick Kids with what might be a stroke. I'll update when I know more!

thanks so much.... and for all the help... some pictures of Yale



Okay and for family.... if you like that family portrait...just be patient...:) don't copy and print... you're probably getting the actual version *ahem mom*

till next time!

Alexis got a heart today!

I just wanted to thank everyone that prayed for Alexis to get a heart. I just recieved the wonderful news that she go a heart today at 1:30 and is doing excellent! I am just overjoyed! Such a young family shouldn't have to go through so much, but I am sooo glad that they have a happy ending now too!

Hey everyone!

So Hi everyone...I know I haven't really been keeping up with the updates...but here I am :)

Yale is still doing amazing. He had great results from his last biopsy and doesn't have to have another until the end of March YAY! We've been having weekly visits from his occupational therapist Melissa. Yale is really starting to like her. (sorry Maggie, but he feels good now so playing is just playing to him not work)
He's now rolling all over the place and getting into all sorts of stuff.

So I'm putting out a prayer request for all the sweet little babies at Sick Kids still waiting for a heart.
Especially one little girl called Alexis. Lexi was in stepdown with Yale while he waited for his heart. She's been on milrinone as well and just hasn't been doing very well. She had an event and ended up in the CCU. She is back up on 4D now, but isn't doing well, she has a bug in her picc line now, and has been battling RSV.
Lexi is the sweetest thing. Her and Yale used to talk back and forth across the room, and we really wish she'd get a heart. She's fighting really hard, but her mom is worried she's just not going to have much fight left in her. Please pray for Alexis and her mom Raena, and her dad Garrett that they find a heart soon, and that Lexi doesn't have to suffer much longer.
Here is a picture I stoll from facebook :)

Raena is having a hard time watching her little girl go through this. I know how much you all have helped me and Yale, and I definitely think your prayers could be used to help this family. thanks a bunch

its been a while

I know I know.. i should update a little more often...but i've been busy doing this!
Hope its enough to keep you happy for a while

Make an on-line slideshow at www.OneTrueMedia.com

some pictures and a prayer request

getting stronger every day

tummytime... he doesn't hate it so much anymore

yale chilled out on mom

At this time I'd like to ask all of Yale's followers to put all they can into praying for a friend. Wyatt Swanton, a fellow heart kid is very sick. He's been in Sick Kids long term and was showing signs of getting better. All of a sudden he's been having very high temperatures and nothing can get them under control. They've done multiple cultures and can't find the culprit. The Docs are worried it might be meningitis and he is having a lumbar poke soon to find out.

I don't have to tell you this is a terrible thing to happen to a baby... especially one as sick a Wyatt. Our prayers have worked to save Yale and countless other babies. Lets save one more! We know they work!

Feel free to visit Wyatt's website and leave words of encouragement. There is a link to his blog on the right hand side. Thanks so much

Tanna Tyler and Yale

HOME AGAIN!

So We brought Yale home Thursday afternoon after over three months in hospital. It felt amazing and we fell back into routine immediately! Yale is growing more and more everyday! We even caught pictures of him sitting unassisted for the real first time. We've been working on developing his muscles and he is working very hard...before you know it I'll have video of Yale walking to post here....but until then..... heres a picture we caught the day we came home!

discharged

So its official.... Yale is no longer in hospital :) YAY!
After an annoying round of antibiotics we finally got the okay to leave for good :)

I say "for good" because for Yale's birthday yesterday he got to have an overnight pass with me! It was great. I was a little apprehensive at first. I mean its been over three months since I took care of Yale overnight...and here they were just sending us off for the day with not a care in the world. Turns out the apprehension was for nothing. We had a blast and for the first time we co slept. I'd never done it before because of Yale's health issues and for fear of smothering him... but wow did we both sleep well!

Dr dipchand today during rounds said that she didn't mind if after clinic this week, if we didn't mind weekly trips to toronto, that we were clear to go home.... AH... I can't believe I'm going home... and Yale is coming and he's healthy. I mean I always knew the day would come... but now that its here its kind of a shock. So the only thing holding us back is a couple of weeks that have echos scheduled for mondays and clinics are thursday... and well I might just make a few phonecalls and get those switched around! :) So there you have it folks. Yale is well enough to go home. he's on two meds twice a day. Only his immunosupressants. oh and an antibiotic three times a week... He's eating and doesn't require any assistance with that...only on mildly thickened fluids until he can be reassessed about his vocal chords and aspiration risk.

Alas...I must go now...Yale is with me and his patience for my update has run out...:) I LOVE IT!

Happy 1st Birthday

Happy Birthday little man. Love you bunches and hope to see you soon.

Love Grandma