Enter Guilt & Regret

Sweet Madden, I miss you.

Tomorrow it will be two months since I have seen your sweet face. I have realized in the short time that you have been gone that this isn’t going to get any easier. I am forever going to have that feeling that something is missing, that something isn’t quite right. My heart will forever feel a sense of loss. Time doesn’t heal. Time only numbs.

As days go by, guilt starts to consume.  I am consumed by guilt. I should have slept at the hospital more often. I shouldn’t have gone for lunch. I should have known something more was wrong, I am not a doctor but I am a smart woman...and I am your mom, I should have known. I should have pushed harder and fought harder. I should have held on to you longer. I should have told you I loved you more. I should have done more...

I am also consumed by regret. If I had known how things would turn out I would have held you more, kissed you more, told you I loved you more. I would have never taken my hands off of you. I wouldn’t have spent a single second away from you. I would have ignored my phone, my ipad, visitors, doctors, nurses...everything and everyone. I would have spent 3 months completely devoted to you.

There would be no doubt in my mind that you knew how loved you are.  I hope you know.

Life without you is hard. It will never be the same.

Your dad and I cry for you every single day. Your brothers really miss you too. Ryker will not sleep wtihout his sock monkey and Kaelin has started sleeping with a picture of you...among everything else of yours he sleeps with.

I believe you are happy up in heaven. Watching over your brothers, your dad and I. I know we will see you again one day. That day just feels too far away.

Your brothers and I decorated a pumpkin for you and brought it to the cemetery. I hope you like it.

There is another baby beside you already. It makes me so sad. I don’t think I single person has been back to visit this baby yet. I don’t know the situation, but I just don’t understand. It breaks my heart.

Please take care of this new little one up in heaven.

Halloween is tomorrow. If you were here I imagine you would have been a monkey. J Happy 1^st Halloween Madden.

I love you and miss you as big as the sky my sweet prince. Sending love, hugs and kisses up to heaven. Xox.

Time

Time goes on but this isn't getting any easier. To be honest, it's getting harder. A week or two I can handle...but forever...forever I don't think I can handle.

There is nothing I want more than to be able to see your sweet little face, kiss your sweet little cheeks and hold your sweet little hands.

I am so sad without you. I think my heart breaks a little more every single day.

I want to go back in time. I want to hold you again. I want to kiss you again. I want to tell you how much I love you again.

I want you back.

Today a bunch of people who love and miss you walked in the hope for little hearts walk in your honor. It was a beautiful day. There were a lot of kids with congenital heart disease there. All little miracles. It was heart warming and heart breaking. I don't understand why you couldn't be one of those success stories.

We will forever do our part to help other little ones living with heart conditions so that they can hopefully overcome whatever challenges they are presented with.

Team Madden bracelets have been made to help raise money for your foundation. The bracelets are very popular. So many people love you and want to support your foundation. I love mt bracelet and will never take it off. It makes me feel like I have a little piece of you with me at all times.

Madden I love you and miss you so much. Words can't describe how I feel. I hope you know how much your family loves you. I hope you felt our love while you were here, I hope you still feel it.
I hope you are being well taken care of. I hope you are happy and pain free. I hope you are watching your big brothers grow and I hope you know how much they love you.

We miss you so much small prince. We love you as big as the sky. Xoxoxo

Love momma ♥

Thanksgiving

Last weekend we celebrated our first holiday wtihout you. It was hard. I don't understand why you aren't here. You should be. No holiday is going to be the same. They will no longer be solely full of joy. From now on every holiday will also be accompanied by pain and heartache.

I know we have a million things to be thankful for but being thankful this past weekend was harder than it has ever been. I had to force myself to be thankful for the time I had with you instead of being heartbroken that I didn't get more time. I want more time. I am thankful for the time I had with you, it just will never be enough.

I miss you so much. My heart is broken and I think it always will be. Nothing will ever be the same without you.

A lot has happened since I last wrote you.  The foundation has been poured at your "spot" which means your headstone can be installed this winter. We approved the design earlier this week so I am hoping that by the middle of November it will be in place. Being able to find you in the snow is important to us.

Ryker's birthday is tomorrow. The only thing he has wanted for his birthday since you were born is for you to be there. Tomorrow is going to be hard. I know he will have fun, I know seeing him having fun will make me smile but I also know that my heart will be missing you all day.

I don't want to do more birthdays or holidays without you.

On Sunday we are doing the Hope for Little Hearts Run. Our family will be walking in your honor to help raise money and awareness for other children with heart conditions. Hopefully we can help make a difference to another family.

We finally have an account open in your name so we can start raising money to help other families facing similar situations as us. Your dad and I are so happy that your name is going to live on forever. You are going to continue making a difference in this world.

I am at the point in my grieving that has me wanting to talk about you constantly. I want to tell every person I see about you. I want everyone to know we lost an angel. I want them to know what you looked like, how much you weighed, what you went through in your short life,  strong you were, how much you changed me and so many others...I just want to talk about you.

I miss you Madden, more and more everyday. I know I always will. I don't know how I am supposed to go through the rest of my life without you. It's not fair. I want you back. I pray you will know me and how much I love you when we meet again.

I love you as big as the sky sweet prince. Sending all my love, hugs and kisses up to you in heaven.


Love you,
Momma xoxoxo

One month with angel wings

Madden,

You have now had your angel wings for just over a month. It still seems like it was only yesterday that you flew away but also feels like I have been missing your sweet face for a lifetime.

We spent this past weekend remembering and honouring you.

On Friday night we went to visit the spot where your body is laid to rest. Auntie Tracy brought balloons. We all wrote on our balloons and sent them up to you in heaven. Your brothers loved watching the balloons make their way up to you. Your dad and I loved it too. The balloons knew the way to you. They all went together. We could still see them way up in the clouds. I wish I could see you way up there... I miss you.

I hope you got the balloons and loved them. They carried with them a little piece of love from each of us.

On Saturday we did the walk to remember. It was beautiful. All the names of the precious babies that flew to heaven long before their parents were ready to let them go were written on the sidewalk. We all walked and read the name of those angels and remembered and honored each one. Seeing your name was emotional. Someone else wrote it. Someone else knows your name. That for some reason means a lot to me.

After the walk the group blew bubbles together for all of your friends up in heaven. We decided to take our bubbles to your grave site and blow them there. It's beautiful and peaceful there.

On Sunday it was a month since you passed away. This day was a day for tears. A day for missing you. A day for loving you. It was also a day for questions and frustrations, for anger and pain. It's not fair. You should be here laying in my arms and I should be holding your hand and kissing your cheek. This will never be ok with me and will never be understood by me. My heart is broken. I miss you so much.

I promise I will not let anyone forget you.

I love you as big as the sky my sweet prince. Sending all my love and hugs ans kisses up to you in heaven.

Love momma.

Pictures

On the day Madden passed away we had a photographer come and take pictures of our family. A family of five that wouldn't have this opportunity again.

Yesterday the photographs came in the mail. The pictures are the most amazing and precious gift we could have ever received. These are memories we will have to cherish forever.

My only regret is that we didn't do this sooner.

A few of my favorites...

Madden I love you and miss you biger than the sky. Sending all my love to you up in heaven. xoxox

Smile

Madden - I miss you as big as the sky.

Tomorrow you would be 16 weeks old. I wonder what you would be like now if things were different. I am sure I will wonder that forever. I wish I could see your sweet little face and kiss your sweet little lips. I am sure I will wish that forever.

On Friday we went back to the hospital. Back to your unit. Your friend Elias had his second surgery and we wanted to be there for his family like they have been there for us. Elias is doing great and should be home within a few weeks. I know you are looking out for him from up in heaven.

We ran into some of your doctors while we were there. It was nice to see them. They had become such constants in our lives. Being at the hospital again was tough. Seeing your room was even tougher. However being at the hospital was also a little comforting. All our memories with you are there. All those people are the ones who knew you like we did. That place was your home and those people part of your family. I miss them too. We fought for you with those people. Its hard to just walk away.

This past week was smile cookie week. Soo many people ate those cookies in honor of you this week. My facebook page is covered with smile cookies just for you. You are so loved. Here are some of the people honoring you this week.

Your brothers are missing you like crazy right now. Ryker really wants you to come to his birthday party. He is even willing to give you all his toys. He is such a great big brother. He knows you will always be in his heart...but that doesn't even feel good enough to me. I not only want you in my heart but also in my hands.

We love you and miss you as big as the sky small prince. Sending hugs and kisses up to heaven. xoxoxoxo

Truth

The truth is I could sit down every single day and write to you about how much I miss you and how empty I feel now that you are gone. I am unable to find the right words for the way I am feeling inside. I miss you more than words could ever express. My hearts hurts. It longs for you.

It is important to your dad and I that your name lives on forever. Your memory, your name and your story are what we have left to hold on to and we will hold on to them forever. We will also share them with the world.

Your dad and I are in the process of setting up a trust fund in your name. Once that is established we will decide what is the best direction to go with the fund in the fututre. It may be a foundation in your name. It may be piggybacking onto another charity that has similar visions. It may be a non-profit organization. Whatever it may be will be a way for us to keep your memory alive forever.

Our plan is to help families in similiar situations. We know we want to help families with children in the Stollery, maybe even specifically the Paediatric Intensive Care Unit that you were in for so long. We have lots of ideas as to how we can help these families but do not have a definite plan. We have been meeting with other foundations to get ideas as to what the best direction for us will be. We will be meeting with the Stollery foundation next week to see how we are able to work with them.

The most important thing to your dad and I, is that this is in your name. We are doing this because of the way your changed our lives. You made us want to be better people. You inspired us to want to help others.

I don't yet know the direction this is going to take us. The only thing I do know is that because of you we are going to positivly impact the lives of people in need.

Madden, my promise to you is that we will change people's lives. Your name will live on. You will be remembered forever.

By the way we come visit your "spot" everyday. Lots of people come visit you. It looks beautiful. We are working on getting your headstone finished and installed before winter.

Fly fast up in heaven sweet angel. I love you as big as the sky small prince. xoxox

This is hard.

Going on without you is hard. So hard. I miss you more and more every day. I miss your chubby little hands, your kissable little cheeks, your soft dark hair, your beautiful dark eyes. I miss it all. I just miss you. Perfect little you.

I am starting to understand how people can continue on in life when they have lost someone so special to them. It's because time doesn't stop. Time doesn't wait for you, it just keep on moving. I didn't know how we would ever make it through your funeral...but we did. We did because the day came and went just like every other day does. Time keeps going no matter how badly I want it to stop and wait for me to be ready for it keep going.

I don't understand why life happens the way it does. I don't understand why you can't be here in my arms where you belong. Your momma is so sad without you.

I hope you know how much I love you and how special you are to me. You mean the world to me. The minute you were born I fell in love with you. I love you with the kind of love that never ends no matter how far away from me you are. It's a special love.

Today the Wallace family came to visit you and the kids brought some teddy bears for you. They also sent a balloon up to heaven for you. I hope you got it.

You are so loved by so many people. People that never even had the chance to meet you. You did amazing things while you were here Madden. You are a true hero.

Sending kisses and all my love up to heaven for you sweet prince. I love you as big as the sky. xoxoxo

I MISS YOU

Tomorrow it will be a week since you flew home with the angels.

I miss you so much.

Everyday I miss you more and more. I know that I will miss you everyday for the rest of my life. You will forever be in my heart and in my mind.

This past week has been incredibly busy and incredibly hard. We are trying to plan a funeral for you. It's hard when all I really want is to pick you up in my arms and bring you home...still. I don't think that feeling will ever go away.

Tomorrow I get to see you. I can't wait. Even though I know you are up in heaven flying with the angels, seeing your sweet little body free of tubes and wires will make my heart smile and my eyes cry. Tomorrow I will kiss your sweet little cheeks and hold you precious little hands for the last time. I will cherish every moment with you.

You taught me a lot while you were here. Lessons I will never forget. I will be a better mother, a better friend, a better daughter and a better wife because of you.

I promise you that I will think of you every day and visit you constantly. I will be the best mother to you that I can be from down here. I know you are watching over us...but I wish I was watching over you. That's the way its supposed to be.

I love you Madden. I love you my sweet prince. I love you as big as the sky...look around, it's never ending.

Sending hugs and kisses to heaven. xoxoxo

Madden's choice

On Thursday night we knew that Madden was struggling. We sat with the Dr's and discussed our few options and the very slight chance that Madden would survive long enough to make it home one day. They told us the first surgery to place the artificial heart had to be perfect, we needed luck...we needed a miracle. This surgery would be 12 hours long and very trying on a little body that had no reserve. The list of complications were endless and the risk was incredible high. We were given a 10 - 15% chance that Madden would make it. It was a chance, there was still some hope. Even the Dr's were hopeful. We were also told that Madden had very high chances of going in cardiac arrest at any point. I knew we needed to let Kaelin know because he still believed Madden was coming home. In my heart, I knew.

Rocky and I both left the hospital to pick up Kaelin and explain to him that Madden was very sick and didn't have great chances of making it home. My 11 year old son cried his sweet little eyes out. We broke his heart. Kaelin was devastated. We took him to the hospital so he could spend some time with his brother. He sat and read him stories and talked to him while we were there, telling Madden how much he loved him and how he wanted him to come home so Kaelin could show him the world. I took Kaelin home late that night and picked up Ryker from my sister's so we could all be together.

I told my family to all be at the hospital by 9am the next morning so everyone had a chance to spend time with Madden.

Rocky spent the night at the hospital and text me through the night letting me know how our baby was. He asked if he talked me into this next step. He asked if we were grasping at straws. He asked if I truly felt Madden was done, I had felt it for days.

Early in the morning, a little after 6am, I prayed to God to take Madden into his arms if he wasn't going to get through this. I didn't want to put him through another surgery if we were just making him suffer more and prolonging the inevitable that Madden wouldn't be coming home with us.

At 7am Rocky text me and told me to come to the hospital as quick as I could. He told me he thought Madden was making the decision for himself. Madden was telling us he couldn't fight anymore.
I jumped up, got the kids ready, text my family to come as soon as they could and raced to the hospital. We had a team of people in Madden's room trying to get him stable when I arrived. I looked at Rocky and I could see in his face that he too knew that Madden was done fighting. He was tired.

Dr Conradi came into Madden's room and asked Rocky and I if we could sit and talk. He started out by telling us that when he went home the night before he did a lot of thinking about Madden. He tried to piece everything together without any emotion and he came to the conclusion that Madden's chances were too low to put him through anything else. He felt that Madden would not survive. The surgeon in the morning on cardiac rounds confirmed this for him. He asked the group of people involved what they were thinking. Why they would put Madden through something else when the chance he would make it was less that 1%....way less. Dr Conradi told us that the surgeon would not take Madden to surgery because he was too unstable. He also said that with how much Madden had deteriorated overnight he knew he would not survive. This was the end of the road. Rocky and I both knew. We knew Madden was showing us all that he was ready to fly with the angels. We just weren't ready to accept it.

He explained to us how the day would go and how the hospital would give Madden a dignified and peaceful death. We told him it was important for us to have Madden baptised so they arranged that to happen. He asked us if we would consider an autopsy. Immediately I said no. I felt that Madden's little body had been through enough and I didn't want anymore cuts, anymore tubes or anymore pain. I wanted peace for his small body.

Our family all arrived and we all spent the day in the room with Madden telling him we loved him and that we were so proud of him. We had him baptised and we got hand and foot casts made. We tried to get a few hand and foot prints as well. In the early afternoon the Dr came in and asked if I was ready to hold Madden. He also told us that the "move" may be too much for him and he may not make it through. This is how fragile my baby was. They lifted him up with all his tubes and wires and held him while the bed was pulled out and a couch was put in its place. I sat on the couch and my baby was placed in my lap. I held him, kissed him and talked to him. He was perfect. So handsome. So sweet.

Madden was slowly deteriorating through the day and we could see it. We asked everyone to say their goodbyes to Madden so that Rocky and I could have some time alone with him. Everyone kissed him and said goodbye. It was heart wrenching and beautiful at the same time. After everyone was gone Rocky and I traded places and Rocky was able to hold our beautiful boy. Madden began to tell us the time was coming to say goodbye.

Dr Conradi came in and increased Madden's sedation so his passing would be peaceful. He gave us some more time. He then came back in and removed the breathing tube from Madden's nose and turned off all the pumps which included all the life support medication. He turned Madden so that Rocky and I could both hold him while his small soul left his body. Madden took 3 small breathes in our arms and peacefully passed away. He was ready, he was just waiting for us to say it was ok.

Madden spread his wings and flew with the angels at 5:35pm on August 31st, 2012.

We got to hold Madden for a while after he passed. We hugged him and kissed his cheeks and cried. We talked to him and told him we were so proud of how hard to fought. We then got to bath Madden and get him dressed for the first time. After he was bathed and dressed we got to really hold him, the way parents are supposed to hold their babies. It felt so good to snuggle that little body even though we knew his soul had already left us. We cherished our time with him.

The staff from the unit came in and also said goodbye to Madden. They cried with us and hugged us. They asked for service information and told us they would like to attend.

Before Madden passed away the Dr came in to ask us again to reconsider the limited autopsy on Madden. They didn't understand why this had happened and wanted the information for learning. The potential for this autopsy to save another child's life is very much there. We agreed that an autopsy could be completed with the condition that Madden's special heart is returned to him so that it is with him for eternity.

Just about 2 hours after Madden had passed the charge nurse came in to let us know that the autopsy test we had agreed to needed to be done within 2 hours of the time of death. It was time to say goodbye. It was time to leave the hospital for the last time. I wasn't ready. I never would have been ready, We cried. We hugged him and kissed him some more and then laid him down in his little bed and said goodbye to our small prince, our sweet angel.

We then gathered up as much strength as we could and walked out of the hospital leaving our baby for the last time.

We know Madden is in a better place. We know that this was his choice. It doesn't make this any easier.

A friend wrote on my wall "An angel in the book of life wrote down your babies birth, and whispered as she closed the book 'too beautiful for earth' ". This gives me comfort. Madden was too perfect for this world. He touched so many people while he was here. Madden will forever be in my heart.

I love you as big as the sky small prince. I will miss you forever and always carry you with me in my heart. You are a true hero. xoxox

Candidate?

Today we started the process called "work up" which is getting everything in order to get Madden listed for a transplant. All parties have to be on board with the decision. Madden was seen by numerous specialists and had numerous tests done, including a CT Scan and an ultrasound of his stomach, liver and kidneys.

In the morning we sat down with the transplant team and discussed our option and how fast we could potentially get Madden listed and how long he could wait for a heart. We then spoke to the head of the "artificial heart" department. Basically they have a pump that is connected to the heart and does the work for your heart until you are able to receive a transplant. This step has some incredible risks but an incredible reward if all goes well.

Both conversations went pretty well and were generally positive.

After all tests were done we sat down with the group of decision makers to hear if Madden is a candidate for a transplant. The consensus is that at this time Madden is not a candidate. They do not think Madden will survive a transplant at this stage because he is too sick. What they have decided to give us as an option is to put Madden on a "Berlin Heart" and see if his other organs can recover. If they can then he may be considered a candidate for a transplant. This decision would be made after a couple weeks on the Berlin. The head of the artificial heart department was VERY honest with us. He told us that Madden's chances are as low as they get. This solution is incredibly risky in his situation and he said we need a lot of luck...this would be a miracle if it worked. Madden's chances are not good. He also told us that the chances of Madden ever getting home are a lot lower than the chances of Madden dying. It was a heartbreaking conversation. The group then went on to tell us that if we felt that Madden had been through enough and that this was the end of the road for him they would be on side with that as well. They would offer him a dignified passing and believe we have offered him everything he could handle. This artificial heart is our VERY last chance. They are only offering this to us because they want us to feel like every option has been exhausted for Madden.

The truth is if we don't go for this, Madden will be in heaven by the end of the weekend. If we go for this Madden has a very slim chance of making it but in the end it might already be too late. His organs have been so sick for so long that they may already be too far gone. He needs a miracle.

I am struggling with knowing what Madden wants. I know that I want him to be here and to keep fighting...but it needs to be what Madden wants. Because of this we have put a "do not resuscitate" order on Madden's file. As a parent it was the hardest decision to make. But I have to believe that if Madden really crashes it is his way of telling us that he can't fight anymore, that he has had enough. And I am going to respect him because after everything this little boy has been through it is the least I can do for him. In this situation my only request is that they doctors do everything they can so that we are able to say goodbye to our son, our small hero.

My life has changed so much in such a short time. I still can't believe we are really here...that this is real. The only comfort I have if knowing that I have done what I said I was going to do from the beginning of this journey and that is love Madden as much as I can for as long as I can.

Madden I love you. I love you. I love you.

Transplant or not?

Yesterday was harder on us then any other day with Madden so far. I still don't want to remember more about yesterday than the title of this post. My husband posted on is facebook account so I have stole that to share here as well.

What I will tell you previously is that yesterday we were told that our baby is dying and that at best he has 3 weeks of fight left in him. They did an echo from down his throat to get a better picture of his heart. This showed that is heart muscle is thickening and getting worse. Madden will not be able to love with his heart. He needs a transplant. His body can fight and be supported for another few weeks while he waits. However, Madden may not be a candidate for a heart. If he isn't we have days left with Madden, and not many days. We will find out by Friday morning.

Real real tough 36 hours for us.....and for Madden. Words you don't want to hear about your child.....fatal....lethal....life support....transplant....dying. All unfortunately we've had a good dose of in the last few days. Carly I'm sure will put the more technical stuff on our blog (as she is excellent at that) but Madden has taken a serious turn for the worse. Our doctors have told us Madden is dying.....and we need to find a "magic bullet" if he is to live. Madden has a thickening in his heart and now will need a heart transplant to survive. As I sit at this computer at 2am ..... unable to sleep...trying to make sense of this...I sit back and I wonder...what has this come to. Madden needs a transplant.....and what does this mean? It means a little baby somewhere has to die for my son to live. I knew for weeks this was a possibility but I never ever wanted this to happen. I never wanted it to come to this. How can I as a father....now rest all my hope on my sons survival on another familys sorrow. I honestly want to be sick. I hate this. I begged and pleaded...never ever wanting to utter the words... transplant...as I knew what the other side will be. But now.....push has come to shove....for Madden to live we need another babys heart. The other side to the coin is Madden may NOT be a candidate for a new heart...thusly their will be tests done and conversations had tomorrow to see where he stands. believe me everyone....I don't write on this page to look for sympathy for me....the sympathy should go to a little boy who has fought his ASS off to be here 87 days in and continues to knock over hurdles like a champion. It's difficult to share your life on facebook or whatever forum but I feel their is a purpose....maybe that purpose is to educate people on our struggle....maybe it's about drawing a community together over a child in need.....or maybe it's just simply to reach out to parents and say..hey....love your kids fully...hug and kiss them every chance you get....because I think we all take that for granted. I wrote along time ago about my work situation and my time with my family. In that letter I said as a family Carly and I both felt it was important for me to take off the time and spend as much time being with Madden as we had no idea how long he would be here for. My last post or 2 ago I said only time will tell if we made the right decision....well....time has told me...and we did make the right decision.... I needed to not only be there for Madden but I needed to be there for me. Please do not take this as us giving up...but just the opposite....I will fight for Madden as long as Madden wants me to fight for him. I will exhaust this last avenue we have for him as I feel I owe it to him for his fight. But as the doctors have told us....that decision may not be ours...but Maddens...and he may say he has had enough....but until that slaps me in the face all I can do as a father is hope....and hope that somehwere out there...a miracle for Madden awaits. Madden...I love you buddy more then words can describe....please keep fighting...AND KNOW YOU'RE LOVED BY NOT ONLY YOUR FAMILY....BUT DOZENS AND DOZENS AND DOZENs OF OTHERS.

I know you are all praying for Madden...and have been...and I want to as always thank everyone for their support.

The only thing I want to add: Madden we love you more than you will ever know. I want to bring you home and love you up but if this fight is too much. I understand and will love you forever regardless of where you are.

I want to say that here because I everytime I try to say it to Madden the words won't come out...all I can muster is "keep fighting Madden. I love you so much. You can do this. We will get you home. You will get a little heart. I am so so so proud of you". I am just not ready...

One day I may write about our past 24 hours but today isnt that day.

Not a good day...

Well today was really not a good day. We are back to having blood pressure issues, big blood pressure issues. We also had a lot of conversations with doctors today that I wish we never had to have. Conversations about the realistic potential that Madden might not make it. Not something I am ready to believe but something that is very hard to hear regardless of what I believe. The team at the hospital does still think that him surviving is a realistic potential. Good. Today was just really really hard.

Then around 8:30 I called the hospital. The nurse told me they were just about to call me...I said "uh oh" and she said "ya, just let me pass you to Dr. Conradi" - the intensivist on in the unit who just happened to be in our room. Never ever a good thing. Apparently they think Madden has yet another infection...one more complication he does not need. They took cultures and started him on 3 antibiotics to cover everything. He continued to drop his pressures so they had to go up all all support and start more support meds. They increased his norepi and started him on epi again. They also had to resuscitate him with fluid - 70 mls which means he is going to stay puffy. They paralysed him again so that the ventilator would do the work for him so he wasn't wasting energy. The doctor told me that he is very concerned about him and flat out worried. Also not a good thing. Earlier today he told us that another infection for Madden could be lethal.

Today sucks.

Tomorrow is a new day and it needs to be better.

Madden, all I can say is that I am sorry that this is happening to you. I am sorry that this is your life. I promise you I will stand beside you and do my best to help you get better. I love you and I want you home. Keep fighting small prince, you will win this.

12 weeks - Happy Birthday!!

Every Monday we celebrate another week with Madden. Every Monday I wish him a happy birthday. Every week is another little victory.

Happy Birthday Madden! 12 weeks old! You have been through so much in such a short time and I am so so so proud of you. You are so strong and so inspiring. I am so proud to be your momma.

My plan today was to blog about Madden's 12 week birthday. I figured I would have nothing else to talk about and today would just be another day of grumbling along in the paediatric intensive care unit. I was wrong.

When I got into Madden's room this morning the nurse told me that the plan is for Madden to have another cardiac cath on Thursday so that they can do a biopsy of Madden's heart. This is not in my plans. I feel like Madden needs a break from all surgeries so that he can have the opportunity to heal. I don't feel like he has been given that opportunity yet. The problem is that Madden's heart is thick. Thicker than normal even for all the stress and extra work his heart has been put through. This makes the cardiologists think that there might be another reason for this thickness of his heart.

I asked the intensivist that is on in the unit this week if another echo could be done prior to the cath to potentially get some answers that may allow us to forgo the cath. Initially he said "no" but after more discussion he said the request wasn't unrealistic and he would ask the question on cardiac rounds tomorrow morning. I am hoping that the echo will show that since his surgery the thickness in his heart is unchanged or better yet a little less thick. This would then allow us to forgo the echo and know that Madden just needs time for his heart to remodel and heal. A cardiac catheter is another surgery and is quite invasive. I am not convinced that Madden's heart is ready to undergo more stress. He JUST stopped having arrhythmia's...and these are a sign of an irritated heart.

The problem is this, if Madden does have another condition and that is causing the thickness of his heart, he will need a transplant. If this is the case knowing sooner than later is best because once you are listed for a transplant the clock starts ticking.

This is not a path I want to have to go down. Though one of the doctors did tell us that his gut feeling was telling him that he feels that this is the road we are going to walk. I still believe that Madden's special little heart is going to work.  It just needs time to figure out how to work.

This morning when I looked at Madden I noticed that I could start seeing his little jaw line coming back. It may sound funny but this is my favourite feature of Madden's. I love his little chin.

Little chin ------>

Also Madden was able to finally open both eyes today! This means the adema is getting better. However...I bought Madden a hat and put it on him today. When I put my fingers on the back of his head to lift it so I could get the hat on, I could feel how squishy his head is in the back. It made me not even want to put the hat on. The squishyness is all adema. The poor kid. The fluid is pooling at the back of his head because he is always laying on it. He needs to get some fluid off. I know this is happening because Madden does have a negative fluid balance every morning. It is just a slow process. It's all a slow process.

Madden I am sorry you are going through all of this. I wish I could do something to make it better. This is not the life I wanted for you but I can promise you it won't be like this forever. Things will get better. You will have the life I want for you. I love you as big as the sky and always will. xox

The little things are the big things

Before Madden was born I, like most people, took for granted all the little things in life that we forget to be thankful for. Over the past few months I have learnt to really cherish the little things in life. Here are a few things that I will never take for granted again:

• Being able to hold your baby
• Touching your baby skin to skin
• Being able to get up in the night to check on your baby
• Going somewhere and taking your child with you
• Being able to open your eyes
• Peeing
• Growing
• Feeding your baby...or even having your baby be able to eat

It really is the little things that we take for granted that mean the most.

A couple nights ago I was at the hospital late. It was a rough night for me because leaving your baby every night is hard. It's not natural. It happens to me often that when I get to my car I can't leave and I just sit in my car and sob until I can finally get myself together enough to drive home. But some nights are worse than others and some nights I sob the whole way home. Then when I get home I call the hospital all through the night to check on him because I am unable to walk into the other room to make sure he is doing ok.

A lot has happened since my last post. Madden had a broncoscopy done to see if his airways were damaged from having the breathing tube in for so long. So far so good. They did find a lot of old blood but think it might be from an old stomach bleed. They also cleaned out all the secretions he had while they were in there.

Madden also had a new pd catheter put in. It's about a 5 inch tube inserted from one side of his stomach cavity to the other. I am sure it is pretty painful.

Both the surgeons doing these surgeries were worried because Madden is so swollen. He is swollen on the outside and just as swollen on the inside. I am sure he is in a lot of pain. You can tell when he is in pain sometimes cause he will slam his little hand into the bed. Though he doesn't move too much because his skin is so tight with fluid.

Madden is also barely peeing. He went for a good 4 days at least without any pee. Just the other day he started peeing a few cc's a day again. At least its a start. Madden's feeds are now at 5 mls per hour of breast milk- not too bad, of course this goes through a feeding tube.

A few new meds have been started:
Amniodorone to help with the heart arrhythmia's that Madden was having. Five different kinds of them - PAC'S, PVC'S, Bijimenys, SVT's and PVSB'S. I think that is plenty. Though over the past 24 hours Madden has not had any arrhythmia's. Yay.

Esmolol to help slow down Madden's heart and help it relax. His heart is very thick and needs time to properly fill before it squeezes. We are hoping this will improve his cardiac output as well as give his heart time to heal and get less thick. They are allowing his heart rate to be as low as 90...this is a little uncomfortable for me but they say as long as his blood pressure stays stable (which it has) they are happy. Drs are a little worried that the thick heart is another condition Madden may have. I believe that it is thick from all the extra work it has been doing and that it will go back to "normal" once it has time to do so. Everyone is hoping that this is the case.

Madden also now has some skin breakdown in his sternal incision. It is honestly a hole that allows you to see right into his body...not like a scratch with skin beneath it. So strange to see and not great for infection prevention. The surgeon that came to see it today thinks it will heal on its own eventually.

Have asked a few different doctors a few different questions lately and here are a few answers:

The only thing I know for sure is that Madden is so strong. He is so strong. Look at everything he has been through and he just keeps going.

And...

In my opinion you will be here for at least another 2 - 3 months. Yuck....my goal is still to have my family all together at home for Christmas. I think it is doable and would be the best Christmas present ever.

Madden has been getting platelets and blood everyday. They think he has something wrong with his platelets...a condition that makes him bleed and clot and is hard to control. They don't know this for sure yet but his platelets are different - bigger and have granules in them and he doesn't produce as many. This could be his age and the stress he has been through. Nobody is sure.

Madden I can't wait to have you home where you belong. Keep fighting little prince. You will get through all of this. I love you as big as the sky. xox

Heart arrhythmia's

I think I could start every post I write with the words "what a day". It just feels like every day is too much. Today was no different. What a day.

Rocky and I both went to the hospital during the day today because things haven't been great lately. As soon as I got in the room I noticed that Madden was having heart arrhythmia's again. I pointed it out to the nurse and apparently they had just started. The nurse called one of the doctors to have a look at the rhythm on the monitor. Apparently he was having PVC's again - which is premature ventricular contractions, basically an extra beat. This can happen when your potassium and/or magnesium are too high. His levels were high but were coming actually coming down to the normal range so a bit odd that they would just be starting. He is also on a new blood pressure medication - dopamine - and I guess this can cause arrhythmia's. So this medication was stopped and Madden was restarted on norepi. This is when Madden started to have SVT's. These are the ones I hate. They make your heart race - Madden's heart starts beating about 250 beats per minute. If he doens't come out of it on his own they have to shock his heart. So far today he has been able to self convert out of them. His heart rate is bouncing all over the place today though from 140 to 177 back to 135 up to 188. I hate it.

Also I guess late last night they were concerned with the delivery of the meds through the pic line because Madden was miserable and he was on a high dose of sedation and his blood pressure was all over the place even though he was on a high dose of blood pressure meds. They decided to switch the meds into his new arterial line and things started to get better. So today they did an xray at the same time as they infused dye into his pic line to see what was going on. Apparently anything that goes into that line hits a clot in the vein and comes out a hole in his neck (this hole is from a previous line). So today they removed the pic line. The poor kid has more lines and tubes in him then you can imagine and wasn't getting his pain medication. The one thing I have continued to say is "please don't let him feel as bad as he looks"...but he did. Poor kid.

Today both Rocky and I had to sign procedure consent forms. They want to do another two surgeries on Madden in the next week. Neither heart related. The first one is a broncoscopy. They would put a camera down his nose into airways to see if his airways are floppy or damaged from having the breathing tube down there for so long. They would also look for scar tissue or a build up of anything that they could potentially remove.

The second surgery they want to do is placing a premanent pd cathdar for dialysis. They don't actually think it will be permanent but it would be in for at least a few weeks and the one he has in now is not functioning all that well and leaks out all the time. Not super effective. This would mean another surgery when they are ready to remove the pd cath as well.

From a heart perspective they are thinking of potentially doing another cardiac cath to see if his outflow tracts are narrowed at all. If they are then they would balloon them to open them up a little. Another surgery.

He also isn't peeing now at all.

It's just never ending.

Positives...he is doing well keeping his blood pressure stable with less bp support. He is draining well with  the pd. They were able to bring down his ventilator settings a little. He is as cute as ever.

They are now starting a medication that they are hoping will help with the arrhythmis'a through the night. I hope so too.

Madden I know this is hard but I promise you there is so much more to life than this...we just have to get through this. I promise to be with you every step of the way. I know you can do this. I love you as big as the sky small prince. xox.

Speaking too soon

I knew I shouldn't have said anything about the corner...I couldn't help it, I was just so happy. Yesterday was just such a good day.

It looks as though Madden has decided it is not yet time to turn the corner.

Today was an incredibly frustrating day. Madden has not been able to settle all day and is extremely irritable. He has been dropping his blood pressure and also de-saturating into the 50s. His heart rate has also been high all day and he has been having heart arrhythmia's. They switched him over to a new sedation thinking this is potentially pain related. He has been paralyzed twice since this afternoon to try and get his ventilation back on track. A couple times they have gotten big mucus plugs out that seem to be blocking the tube and then things seem to slowly go back to normal. However it is continuously happening. Something is going on and the doctors need to figure out what it is.

Its been a very long day.

Madden please please please work hard to get better. I want you home. I love you as big as the sky. xox.

Corner?

 I know I shouldn't say it, I probably shouldn't even think it....BUT I think Madden might be TURNING THE CORNER! Or at least he is getting closer to the corner. Every time I say this or even think it something happens and Madden takes a few steps back....but I am going to say it anyways. Madden had a very good day! One of the fellow's even went as far as to tell me that she thinks he is turning the corner...I so hope he is. I know we still have a long way to go...but today was such a good day.

On Friday night we went as a family to Red Deer to support Kaelin and his soccer team during their provincials. Soccer wise the trip wasn't very successful but I think this trip was important for us to go on as a family for our other two kids who have been feeling a little neglected the last few months. We had family and friends go to the hospital and spend time with Madden in our place this weekend so he wasn't alone. Which really made it much easier for us to be able to take the time off. We got back in the city around noon today and we all went as a family to visit Madden.

(We also continuously called he hospital so we knew Madden was doing well enough for us to be away...not to mention received texts from everyone who was visiting as well as texts from one of the other moms in the unit...thank God for the amazing people we have in our lives).

When we got to the hospital today Madden was doing very well. In fact shortly after we got their the nurse turned off his blood pressure medication completely and he was able to keep his pressures very stable! This is a big win for us. Madden's heart rate has also come down to the 120's - 130's. His LA line which measurs the pressure in his left ventricle was sitting around 12 for most of the day, another big win. When we saw the surgeon on Friday he told Rocky and I that anything under 15 for that line was great for Madden. They took Madden catheder out on Saturday night..well actually it fell out but they decided to leave it out since he really isn't peeing anyways. I am glad it is out because I think it is just another potential source for infection and also painful but I am not happy that Madden isn't peeing. This is something that needs to start happening soon. Tomorrow they are planning on starting feeds again through the feeding tube, just 1 ml per hour to start but at least it's a start.

I am so incredibly proud of Madden and how hard he is working to get home. I am proud to be his mother. He is an amazing little boy who has taught me so much. During our time together at the hospital we read a lot of books. I hope it is something that Madden and I will continue to do forever. It's something natural. Something we can do anywhere. It makes my heart happy and I hope it makes his heart happy to.

Madden you are my little super hero. I am more and more amazed by you and your fight every single day. I can't wait until the day I can pick you up and cuddle you. So many hugs and kisses are waiting for you. I love you as big as the sky little prince. xox

All babies do is eat, sleep and poop...

All babies do is eat, sleep and poop...this is so not true. Babies are amazing little beings. While you are snuggling them they are busy learning how to regulate their temperature, regulate their heart rate, find their voices, digest food, make platelets and blood cells and so so so much more. Be so proud of your baby. (S)He is doing incredible things right before your eyes. On top of all of this my baby is also trying to heal his little heart and adjust to how his heart now functions. He is truly amazing.

In the world of Pediatric Intensive Care babies misbehave by dropping their sats, dropping their blood pressure, having a high heart rate etc. Today Madden was very misbehaved...again. It's hard to believe because he looks so sweet and innocent...but he likes to keep everyone on their toes. This morning Madden needed lots of fluid to be able to keep his blood pressure up. I really don't understand why we are having continual blood pressure issues, but we are. Then again this afternoon Madden needed more fluid. His pressures are all over the place - super high then way too low, then back to normal. It just doesn't make sense to me. Then on top of the pressures Madden started to desat into the 70s and couldn't come up regardless of how much oxygen he was being given. At the same time the wave form on his left ventricle line changed. Madden was not a happy baby and had 3 doses of extra sedation before finally settling out. During all of this a chest xray and an echo were ordered. The chest xray showed that the breathing tube was sitting a little low. They pulled it out a bit and increased his settings on the ventilator and he settled out. The echo was done but it was hard to get good pictures of his heart because of the adema and all the dressings he has on his body. They were checking his valves to see if they had started leaking. The cardiologist said he was unable to tell but there was for sure not massive leaking.

Around 5pm his primary, Dr Aditia came in the room to see what had been going on all day. He looked at the wave form of his LA with the meds that were running through the line turned off and said he thought the wave form looked ok. Then told us he was going to go look at the results from the echo that was done. He looked at the results and came back to talk, I told him he should just do his own echo because the other cardiologist couldn't see much...and guess what, he did! This is why he is my favorite person. He truly cares about Madden. He saw that his valve was not leaking at all, 0%. WHich is huge for Madden. Great news. His pulmonary valve is leaking a little but that's ok, they say everyone's leaks a little. His heart is functioning really well - beating properly, squeezing well etc. However it isn't yet doing it's job great yet...not profusing well, not able to regulate temperature, not able to stabilise pressures etc. The other problem is that Madden's heart is still very thick. Once his heart muscle is able to relax a little this should change. I think his heart just needs time to heal and then start working well.

The other thing we learnt today is that Madden's platelets are not normal. They are bigger than they should be and they have some granules in them that should not be there. What this means we do not yet know. Only one other family has ever been reported to have this same problem. Rocky and I both have to get some blood work done to see if we also have it. If we do then the testing that needs to be done can be done on one of us instead. I am hoping this is something that is happening because he is so sick but that it will get better with time. He doesn't need any more problems.

Keep fighting little prince, I love you as big as the sky.