Storytime!!

Things are starting to look up.... I really hate saying it out loud because it seems like just when we are doing good they turn real quick. But he is doing relatively well. He is still on high flow but they are weaning. He is tolerating it well. He is still on Milranon to help his heart squeeze and take some of the work load.
We moved to a new room. We love this room because there is sunshine. It is amazing what a little sunshine can do for your spirit. I didn't realize it until now. I don't see much sunlight because I am in the hospital all day every day!
We had such a good day and for the first time in over a month I was able to snuggle both my babes together. It felt so good to do something "normal" even though we are in the hospital. We were able to snuggle up in the rocking chair and read books. Az loves reading to her baby brother.
It's the simple things like this we often take for granted. DON'T. I plead with you don't. We are not in charge of our future, and we are not certain what tomorrow holds. Cherish every moment you can with your children. Everything else can wait. You won't regret it.... I promise!

Extubation

He did it!! We did it!! Tytan proved them wrong again. They told us he probably wouldn't come off ECMO... He did! They've told us almost everyday for 26 days he wouldn't ever come off the ventilator and we needed to consider a trach... But today HE DID IT!! He is no longer breathing by a machine. My little tough man is breathing on his own with the help of CPAP. I am so proud of him. I know we still have many hurdles to jump, but this is another big one!! We pray he can continue to breathe on his own.

Isn't is so nice to see those sweet little lips?

BEST DAY!!

Tytan is getting closer to coming off the ventilator....Cross your fingers. They are telling me within the next few days. They have also seem to be getting his SVT and arrhythmia issues under control with meds. He hasn't had an episode in over 24 hours, so that is really good for him! My favorite ICU doctor has been promising me almost every day he would let me hold my babe then Tyt would usually throw us a curve ball & I would be unable to.
Well after 26 days I was FINALLY able to hold my baby boy. No one really realizes what this day meant to me. It probably meant more than it did when I held him for the first time. Deep down I was so scared this day would never come again in this life. With all the issues and the reports from doctors, I knew that was a very good chance that my baby boy wouldn't ever snuggle down in my arms again. It wasn't only a special experience for me, but also some of the sweetest doctors and nurses there. That is one thing I can about Primary's and especially the Cardiac unit, they love their patients. They fall in love with their families and come together as one. They have watched us fight for our son's life day after day now for nearly a month. They have watched me lay on my baby's bed and plead for our Heavenly Father to heal him. They've wiped my tears, they've made me laugh, they've insisted on me eating when I was too scared to leave the room, and they've become some of the greatest friends in the world. As they placed my beautiful baby in my arms, I can't even come up with the words to express the happiness my heart was filled with. Sal looked at me and said, "These moments are what make our job worth it!"
Tytan never looked so comfortable as he did in my arms. I think he enjoyed it as much as I did. I can't imagine what he had been thinking going from being held all day and night to not being held for 26 DAYS :[ I will never forget the comments and the looks I received from all of our caretakers, especially Andy Smith. He walked in and the tears fell down his face. He said, wow what a sacred moment! Thank you for letting me be part of it. Other walked by and gave us thumbs up or a "Awesome, It's about time!"
It truly was the best day!! I am so grateful they finally let me hold my little man! We loved it and are looking forward to it again hopefully tomorrow, if not sooner! Sal was kind enough to take this pictures and I am SOOOO glad he did!!

MRI Results

Today has to be the second worst day I've had in the hospital. I feel like I have been kicked, beat to pieces, then stuffed in the trash. Yesterday Tytan went down for an MRI and well today we have the results. This morning Sal, the ICU attending, came and talked to me and said the images aren't very good but not to lose hope. He wanted to warn me before everything was slammed on me at once. The meeting was set for 12:30 and we would have Jordan on a conference call, so he could hear everything as well.

I guess you can say I'm either in denial or have ALOT of hope, but reality is really trying to bring me down.

We met with neurologists today and Tytans MRI results are devastating! That perfect little brain of his has taken a hit, a very hard hit:( The damage and hemrige on his brain is much much worse than what we expected. What does that mean? That's the worst part. We don't know. The images show his quality of life won't be much at all, but miracles happen and I feel he is a miracle! They mentioned things today like never walk, never talk, never eat, blind in one eye, cognitive thinking, etc. I'm trying not to listen to it. I'm choosing to listen to The Lord and have faith! I have faith that Tytan will prove them all wrong, and I'm already looking forward to the day when I bring him back in here walking. I know it's not going to be easy, but I so worth it! 

Today I am angry for the first time being here. I know they didn't but I feel like THEY did this to my perfect boy. I handed over a happy baby to a team of surgeons and 9 1/2 hours later we received a boy with all this. I don't love him any less and I will take care of him NO MATTER what his condition is, but really wasn't his heart issues enough?? Please pray for him, pray for me. Pray for me to understand & to forgive. 

He's Listed!!

My nightmare is becoming a reality much sooner than we expected. Today we talked with the medical team and Tyt's heart is pretty whacked both electrically & anatomical :/ He has had more arrhythmia's today than he's had a normal heartbeat :(( They feel the only way for Tytan to have a chance at a semi-normal life is if they get him a new heart. Finding a heart this young chances are slim to none but I have hope and believe there is a little angel baby out there that will give my sweet a second chance to live. We are definitely praying for a miracle.

I knew this day would come but I never imagined it'd be sooo soon. I thought we would make it into childhood/teens before we faced this issue. The hardest part of this is knowing we aren't fixing the problem completely. We are pretty much just exchanging one set of problems for another one, but it is Tytan's only chance. There is A LOT of lifelong problems with transplant. He will be on millions of meds the rest of his life, he will have to spend a lot of time cooped up so he doesn't get germs, he will be in and out of the hospital for multiple tests, etc. It will once again put a whole new strain on our family, but we will do whatever it takes. Financially, we will have to fork out thousands & thousands of dollar that is coming from we have no clue, we will be living in Salt Lake for at least the first year, and many other things.
We don't care about any of that though. We just want our boy and we will do EVERYTHING we have to to keep him here on earth. I pray that if another family has to lose a child they chose to donate. It is so hard to wrap my mind around that either me or another mother will be losing their baby. Sometimes life sooo isn't fair and this is one of those times.

A Day Out with Big Sis

Az has really had to take a place on the back burner since everything happened with Tytan, so today we thought we would take her to do something fun! Tytan is in an okay spot, so the doctors & nurses begged me to get out and do something normal with her. My mom stayed back to be with him and we took Az to the circus. Azleigh had a ball and it was nice to get out, but it just doesn't feel right when we go out. Our little man is missing and it feels so weird without him. It was a long few hours and I was on needles & pins just crossing my fingers nothing went wrong.

I never want to let go!!

I'll be honest.... I'm scared. I felt like we were over the biggest hurdles, and I'm afraid we haven't seen anything yet. I'm scared of what our future holds. I'm scared I'll never see my baby boy smile again. I'm scared he will never say Momma or Azy or anything for that fact. I'm scared his brain really isn't going to recover. I hold him right now & I never ever want to let go. 

He has been removed from the transplant list for now... Until he proves otherwise. With his MRI results he's not eligible for a heart :( so now we pray for two things. 1. His brain recovers & 2. His heart lasts long enough until he can prove he will have the quality of life for a new heart. 

Our new game plan is we will be here for another 60 days in therapy and rehab. We will have another OHS in 60 days and hopefully be he as a family of 4 by Christmas! That is my wish & our goal! 

Happy Birthday Jaxsten!!

Today is a special day for a special boy! Jaxsten is Tytan's "heart big brother" and he turned 10! Jax has Hypoplastic Left Heart Syndrome as well. He and his family have been our hope and our strength! We are soooo grateful for them!! Since Tyt couldn't be home to celebrate this picture is as good as we could do!! Doesn't he look so good though? Open eyes and all :]

Tytan's Biggest Fan

I must say Tytan couldn't have asked for a better big sister! The Lord knew he was going to need the very best and that is what he got. Azleigh has been amazing through this all. She is an absolute angel and way above her age. She has been so mature and understanding. I know that is weird to say about a 20 month old but really she just gets it! We have been very fortunate that my mom has stayed up here with her just down the road. She has came to visit every single day, and as the doctors say "Keep bringing her. She is her brother's best medicine" She is so cute with him and treats him as nothing is wrong. This is life as she knows it, and to her it's normal for her brother to be hooked to a million machines. She kisses and sings to him just like she did at home.
Tytan loves her just as much as she loves him. He is very responsive to her and opens his eyes every time she comes to visit now. She loves to read him books and give him kisses. She also loves to take the pink stethoscope and "check his heart" as she would say.
Az is the little sunshine of the ICU. The doctors and nurses wait for her every day! They love to hear what she has to say and what jewels she is wearing. I am so very grateful for her, and the light she brings in such a dark time!

We Can Do Hard Things!

Over the past 5 and a half months this has become my new motto. I never knew I could be so strong and do such hard things in my life. Before now, I "thought" I had hard times, but they are no comparison to what I have experienced here. It has been the hardest thing in my entire life watching my baby hurt, be poked, struggle to do the simplest things such as breathe, open eyes, move, etc. I so badly wish I had a magic wand and make it all better, but I can't. Today has been one of those days. It's only half way over and Tytan has already had to be shocked 3 times. He hates it! It hurts him so bad. It shows. He cries but no noise comes out because of the breathing tube.

Isn't he just so handsome??

As I have watched my baby boy suffer over the past 5 1/2 months I can't help but think of our Heavenly Father and Savior. They did this same thing times infinity. Not only did Jesus Christ suffer and feel every ounce of sadness & hurt for Tytan and I, but he did for the patient next door, the people on the news, every single one of us. He felt every ounce of pain and sorrow each of us have in our entire life. This is so mind boggling to me because I can barely handle my own trial, little lone every one else's. Think of the love our Heavenly Father and Jesus Christ has for each one of us. This wasn't an easy task, and he didn't have to do it. But they loved us enough they did do it, so each of us could have eternal life. And our Heavenly Father, my heart aches with him. How hard must have it been to watch his only begotten son suffer and know he couldn't help. He couldn't take the pain away. He even had that power but knew it was something that had to happen. I know how it feels to watch your only son suffer. I know what heartache fills your soul when you can't do anything to take away the pain. Through this experience I have learned a greater appreciation for our Savior & Heavenly Father. They love me so much, and even though he has already experience this for themselves and us they are ALWAYS there to help! I have felt them by my side every step of the way.

Movin' in the Right Direction

I am feeling so blessed lately and grateful the Lord is answering prayers. It may be slow, but they are being answered and I couldn't be anymore grateful. Tytan is starting to make progress. They are baby steps, but it still is very important progress!
Yesterday he was moved to a regular conventional ventilator, and he is tolerating it very well. He is still on the nitrite oxide, so we will hopefully be able to wean that soon. He also had a NJ feeding tube inserted into his intestines and is slowly being introduced to milk again. It is very very slow, only 5 cc an hour. They will increase that as his body tolerates.
And we couldn't just have a day of all good news so of course we had a hiccup too. Tyt is still having a lot of rhythm issues. He has been going into a new one called bigeminy. It is similar to SVT but we are hoping we can get it under control with meds. He is becoming more responsive to me when he's not drugged up!! We are hoping for some movement soon. That would be promising.
We are so thankful for this tough boy and the miraculous miracles we are witnessing with him! He's amazing! Please continue to remember him in your prayers!

IV's in every Limb

Seriously I hate needles. I hate IV's and I am such a baby, so to sit and watch my little guy be poked a million times and have an IV in every part of his body makes me cringe. He is so stinkin' tough! Tytan is still fighting. He was able to be transferred from the VDR to a regular conventional ventilator. This is one step closer. I am dying to hold my little guy, but I can't yet. He has to be SVT free for 24 hours and off the vent. It is just too scary to move them around with a vent, so I have to continue to be patient. Praying it happens soon though!

I still haven't left the hospital since any of this happened. Thank heavens for wonderful family and friends to bring me stuff, or I'd be looking real homely. The staff is taking good care of me and makes sure we have the best accommodations. That is about the only perk of having the sickest kid in the hospital is you usually get the nicest/first pick of things. I have been staying upstairs in the Ronald McDonald rooms at night. They are really nice and a comfortable bed. The best part is I am only seconds away from my little man if something was to go wrong.

Thank you! Thank you!

We have been so blessed by the love, help, and support we have received from SO MANY! I am just in awe at the friends, family, and even strangers who have reached out to us during this trying time. I cry every time I get on facebook and see almost EVERY FB friend with my baby boy's "Prayers for Tytan" profile picture. It is amazing how a small community has came together for us and rallied around us to keep us off the ground. I am so overwhelmed by the participation in fasts and prayers in our behalf. It has truly been amazing, and I am not sure how to thank you all. Just saying thank you seems so simple and inadequate but really thank you!! I haven't had time to respond to all the messages, but I love to read them. It is those little things that get me through the days. Please continue to remember my little family, especially our special little guy in your prayers. We have a LONG, HARD road ahead. I love and thank you all for your kindness!

Fighting For His Momma

I know these are some sad pictures, but it has been a rough day. It's building up and I'm starting to break. I was sitting next to my little sweet babe's bed talking to him as I do everyday. To my surprise and everyone else's he opened his eyes to his momma's voice & now has many times throughout the day. This is the first time I have seen his baby blues in over 2 weeks. What a relief and what an honor to know my baby loves me SO MUCH that he gives every ounce of strength he has for me to see me. It seriously made my day and gave me just what I needed to keep going. I will never forget this moment. I am so head over hills for this little guy. I can't wait for him to get big, so I can tell him all these stories. He has my heart, every bit of it! I love you Tytan J! You know help mommy even when you're having to fight for your own life.

Making the Hospital a Home

Yes I know it's a horrible title, but it couldn't be more true. We are having to make this place a home because unfortunately the end is nowhere in sight. We will be here for at least a few more MONTHS. We haven't talked future plans quite yet, but a care conference should be taking place soon and we will discuss all of that. With that being said I started hanging things up today trying to make this place a bit more "homey"! I haven't held my baby in weeks and it is such long days sitting here. Az comes to visit everyday for an hour or so, but that is about my only visitor/busy time of the day.

Update on the Little Hero

Our tough little Tytan has had a bit of a rough crazy day. He had another episode of SVT and had to have his heart paced once again. They also changed him to a new ventilator. He tolerated it really well at first but after a few hours starting going downhill, so he his back on his old ventilator, the VDR. They also took off his big bandage off except for the incision where the ECMO site cannulas were. He neck looks sooo sore, but they are worried about infection, so we are watching it VERY close. He can't have anything else go wrong! Please keep praying for my baby.

Seizures

One more thing to add to the list.... SEIZURES :[
Now our little boy has started seizing. It is so hard to see his little body just sit and twitch :[ The seizures are a result of brain injury, but it is important we get them taken care of because every time he has one it causes more damage. They are having a hard time getting them under control, so he is on multiple meds for them hoping we can get them to stop.
The turban looking thing on his head is an EEG test. It is measuring the brain waves and detects seizure activity. They are worried because his EEG is abnormal which means some brain damage but we just don't know how much or where in the brain it's located.

5 Months Old

I usually title this post "Happy _ Months Olds" but I just can't do it this time because really that is not much happy except for he is still here which I am so grateful for, but today I am very emotional. I am struggling being here and wondering why all this has happened. It still seems like a bad dream to me. 2 weeks ago my baby boy was completely fine & now look at him. I don't know from minute to minute how much longer I'll have him.
5 Months ago today our perfect little prince entered the world, and ironically I am in the same place feeling a lot of the same feelings today that I felt the day he was born.... Feelings of fear, thankfulness, hope, exhaustion, and A LOT of unknown. There is still a lot of things that are unknown but one thing I know for sure is I'm so grateful this sweet baby chose me as his mommy. Even though it has been the scariest time of my life I have been able to soak up every second with my little man whether it was holding his hand in a hospital bed, rocking him to sleep, playing, or watching him light up with his sweet smile when I talk to him. Whether I have this boy for 5 months or 5 years on earth I will be forever grateful for these precious moments, laughs, cries, and lessons he has taught me. He truly is my hero!
I can't help but cry knowing everything we have worked so hard at these past few months is out the window, and we will be starting fresh. He was doing so well and learning so many new things every day. He was getting so strong, and now he can't even remember how to suck :[ My heart aches but I will choose to focus on the positive and write down the things he was doing before all this happened. I pray that we can get back to that spot someday soon. He was:
-pushing up on his stomach & lifting his head

-giggled for the first time this past month
- holding toys & reaching for things
- finally in size 1 diapers
- loved being outside
- wearing some of his 0-3 month clothes
- loving his momma more than ever
- very interactive with his big sis
- still has the cutest smile in the whole world
- rolling over from his back to belly

And even after all that he has accomplished more in the past 2 weeks than most do in a lifetime. He has continue to beat every odd. He has continued to fight. He has continued to teach everyone of us some of life's most valuable lessons. I love you Tytan and am so proud of you. Happy 5 months little man!

Good News is ALWAYS short lived :[

Unfortunately good news is ALWAYS short lived around here, and Tytan's little body has ran into another obstacle. Yesterday he made a HUGE step and was able to come off life support. Today our little man has started having SVT episodes AGAIN :[ This is hard for me because surgery didn't even fix this. It fixed absolutely nothing. Really in all reality all it did was cause my baby's heart to stop beating, and my world to come crashing down.
The SVT has come back in full force making his poor little heart race back up to 250 BPM. The Adenosine isn't working so they are having to transesophageal pace him which is absolutely heart breaking. The look on his face, and the tears streaming down his face KILLS me. I just wish I could switch him spots. They thread a probe down his nose and it touches the back of his heart. It shocks him for about 10 seconds and puts him back in rhythm. This has happened multiple times today, so unfortunately the tube has to stay down his nose. Now he has one in each nostril. His right side is his pacer wire and the left side is his feeding tube.
I am trying to be strong but I am exhausted. I am tired of watching my baby go through so much. I am tired of being stared at by every parent/visitor who walks through the ICU because I have the sickest baby and the baby who is hooked up to the most machinery. I am tired of the "I'm sorry" looks that come from every nurse,doctor, social worker, etc. from the ENTIRE hospital because they all know Tytan. It's not cool nor good for your child to be the popular kid in the hospital. It doesn't mean anything good.
I am praying to witness another miracle. Please Heavenly Father heal my baby boy! I need you now more than ever.

/

We Believe in Something More!

Since last Friday we have been given "the talk" that we need to realize how sick he is and start making future plans because "he can't get much worse". I know it's their job but seriously I am getting sick of it. I'm getting sick of being told, YOUR CHILD IS GOING TO DIE!! Don't get me wrong I am in no way denial. I am very aware of my lifeless little guy and his condition lying on that bed. I know he is living on a machine right now. The odds, the statistics, and the medical diagnosis for him doesn't look good. They all lead to the same thing... DEATH, but I BELIEVE IN SOMETHING MORE!!
After hearing it from every single doctor, nurse, NP, surgeon, and any other individual with a medical title I finally let them in on my feelings, and my stand as a parent. It is hard because many of these people are absolutely wonderful, but they have different religious views than us. They aren't LDS, and they don't fully understand our beliefs. Today as Dr. Bailly sit down to give me "the talk" for the hundredth time I decided it was time I give him "a different talk". I simply told him that we believe in something more, and we don't believe our little guy's mission is through on earth. As parents we aren't giving up on him and we will fight and fight until he gives us reason to think otherwise. When it is his time to go he will go with or without medical intervention and we will intervene until the very end. Tytan is still fighting and SO ARE WE!
From that little talk I think they got the hint because it wasn't mentioned near as often or at least not near as blunt. Tytan is still fighting. He has started a little more movement which is a HUGE step. Most of his other body functions (heart, kidneys, liver, etc.) Now we just need those sweet little lungs to inflate so he can breathe and his oxygen saturation will be sustainable.
Please continue to pray....We have a LONG LONG road ahead!