finnsjourney-blog

[finnsjourney-blog]

New Home

All updates on Finn’s heart will now be shared here:

http://finnsheart.blogspot.com/ 

[finnsjourney-blog]

Moving Day

Yesterday was moving day. I barely slept the night before. My body was, and still is, full of anxiety, fear and excitement. 

I brought Asher to school knowing that I wouldn’t see him until the weekend. My anxiety level was high with leaving Finn so close to his transport but I needed to see Asher. His energy and light give me so much hope. My idea was to go get donuts, a rare treat, however he was adamant that he wanted a muffin. We sat and ate our muffins and talked about the week. How Papa and Grandma were going to stay with him for a few days and then when the weekend came he gets to join us in Rochester. He was ecstatic that we will have NEW playgrounds to check out.

Back at Children’s they had done everything to prep Finnegan for his road trip to Rochester. It was so calm when I got back. Lots of hugs and tears. They have become our family. The team, beyond even the doctors and nurses, have seen us through the darkest days of our lives. I’ve squeezed their hands and cried on their scrubs. It was hard to say goodbye.

When the transport team showed up it got real. I broke down sobbing. I’m not entirely sure if it was fear or happiness, maybe both. I was scared because I knew what they were going to do in order to get them on the Mayo’s ECMO but I was happy because I knew that this was the next step in our adventure. Rochester, heart, heal. Things happened quickly. I was so happy to see Dr. Rood. She wasn’t supposed to be on but she came by to say goodbye. She stood next to me when they took him off ECMO and held her breath with me during the minute long transfer. Once they had him up and running on their machine it was a matter of untangling lines, switching him to the stretcher and before you knew it they were on their way via ambulance. Jeff and I not far behind. Driving the longest road of our lives.

I’ve never been one to worry about the weather, but with the precious cargo that ambulance had on board I was terrified. It was gray, misty and foggy a metaphor of what I was feeling internally. “Please don’t rain or snow” I kept  saying to myself on the way down. We drove separately and actually beat the ambulance. Jeff and I waited impatiently until greeted by our transplant NP and coordinator. A whole new family to get to know. Nurses, doctors, coordinators, everyone. The team is much larger here because it’s a teaching hospital so there are added bodies and names to remember. It was a relief when we saw Dr. Johnson, our first familiar face. 

The transport team found me as soon as they could to tell me that he had a successful trip. A little bit of balancing with the heart rate and blood pressure, but nothing to worry about. They settled Finn in and did a lot of baseline work. Echo, x-ray, ultrasounds and lots of labs. The team here at Mayo is so complimentary of our friends up at Children’s. They keep reiterating what we already know, that they took tremendous care of Finnegan. He was so stable by the time they had to transfer him that it made Mayo’s job easy. Another reason to love our Children’s friends.

This morning it was wonderful to see Finn’s face. He looked as content as one can in this situation. The atmosphere in his room was calm. During rounds there was a lot of information to discuss but ultimately not a lot of changes to his care. He is listed, he needs a heart. We have to keep his other organs intact and ideally get him of ECMO. We know the longer he is on it, the higher the risks are. As of today the rest of his body is holding up. As of today he needs ECMO. If he starts to tell us he doesn’t we can wean support but today he needs it.

We will figure out our new normal. Hopefully just in time for it to change again and that change will mean he gets his gift. Until then we follow Finn’s lead, support and love him. I am so impressed with the Mayo team already, even though I woke up today missing my Children’s family. 

For now my son is stable and on the list. He has a whole new group of people helping and rooting for him and that isn’t a bad thing. I love that little meatball so much. He has been opening his eyes and squeezing my finger. It’s obvious he knows that his daddy and I are there. His heart rate and blood pressures have been stellar and we hope to maintain that. Our intensivist, Dr. Van Doran is just amazing. She is already talking about starting nutrition! The idea that he will be getting breast milk, albeit extremely small amounts, is exciting. That is my job as the mommy, feed the baby. Our nurse Mandy already has seen that I want to be active in his care and is encouraging me when possible. Everyone has been so kind and generously put up with my question asking. Jeff is even asking them now, there is so much more to learn.

Children’s was our training. Transport and listing was the starting line. Now we begin the race. The problem is, we don’t know how long the race is. 5k, 10k, half marathon, marathon, Iron Man? We don’t know so we have to pace ourselves and our expectations. I’ve been told this is the hardest part, the waiting. The staying “healthy” so-to-speak. 

Along the road we are going to need encouragement, water, nourishment, support and occasionally to be carried toward that finish line. We know that we have the right family, friends, work and medical to help and support us and for that I am grateful. 

You are one loved kiddo, Finn! On your mark, get set, GO...

- 

Speaking of moving, I had started this tumblr page for myself and my son. A sort of online baby book of our adventures. I had done the same for Asher previously. With the turn of events I have decided to change the platform to be something a little more organized and easier to sort, tag and revisit the incredible journey. Therefore I will be updating the following page going forward: 

http://finnsheart.blogspot.com/

It will still be my raw and unedited account of what we are going through and I welcome friends to follow along if they so desire, just a different URL. 

May 2nd, 2017

[finnsjourney-blog]

Listed

At 7:07 PM today, May 1st, 2017 my son was officially listed as a 1A status for a heart transplant. Today was exciting, exhausting and full of anxiety. My body, brain and heart are tired. This is the next step on our adventure and begins the new chapter in our book. Goodnight Finn. Now, we wait.

[finnsjourney-blog]

Dear Finnegan,

My darling boy. I hope you can feel how much I love you. Right now your doctors and nurses don’t think it’s safe for me to touch or talk to you. You get so excited when you hear my voice that you expend valuable oxygen that your body needs to stay alive. It hurts me because I want you to know that I won’t leave your side. You need to know how much you mean to me.

Tomorrow we start the next chapter of our story. I am so sad, scared, anxious and excited all at once. We need someone to offer us their gift of life. It’s hard because I know what it’s like to see you sick and I don’t want any other mommy to ever feel this way. Someone, somewhere is going to have to make a very difficult decision to donate their baby’s heart so that you may live. There are very few people in this world who can understand how I feel about that. It’s so conflicting.

Your team here at Children’s has become our family. The other heart mamas, nurses, doctors and the rest of the team here is the only way we have made it through this. They have held my hand, hugged me, cried with me and loved us in the darkest times we’ve ever experienced. I can’t imagine going on the rest of this journey without them. You will never know how much they’ve done for you, but I can see it when they look at you, they love you.

I’m sorry that I couldn’t give you a heart that works. I hate that I can’t fix you with my love. You are so important to me and I would do anything to make you well. There are so many things I want to show you and teach you but we have to get past this chapter first. 

I want you to know all the feelings that I have throughout this journey. Your daddy and I have experienced more pain and hurt than I thought was humanly possible. I have cried harder and longer than I knew I could. I have also loved harder than I’ve ever been capable of. I know our ups and downs are far from over and that we will forever be battling your broken heart but, I am in it with you. I will hold your hand and kiss your cheeks everyday. I will sit and cry with you and jump up and celebrate with you. I will be grateful when you have a toddler tantrum and cherish the mundane. I promise to be present, positive and your biggest cheerleader. There is nothing that I wouldn’t do for you.

Tomorrow we will meet our new family and start settling into our new home. It’s going to be scary and I think we are going to miss Children’s but it’s the best place for you and your heart. They say they will get you on the transplant list by the time the day is done. Then we start the longest wait of our lives. 

We can do this darling Finners. I will be strong and you will be stronger. There is so much left for you to do. 

Love, 

Mommy 

April 30, 2017

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[finnsjourney-blog]

A month later

Today marks one month in the cardiac ICU at Children’s. Thirty one days since my baby has been home. Thirty one days since my family has been in the same room. I can’t remember the last time I breastfed, bathed or napped with my baby in my arms. It’s been one month that I have been playing part-time parent to each of my sons. It’s far from over.

After last weekend’s difficulties Finn wasn’t recovering. He got worse. His blood pressure was low and his heart rate was high. The doctors and nurses tried to do everything they could to stabilize him but he would only respond momentarily before his numbers would drop off. They were scared he was going to arrest. We couldn’t let that happen.

On Thursday April 27th at 3:00 PM we made the choice to put Finnegan on ECMO. ECMO is a life saving machine that oxygenates his blood for him, removing the need for his heart to pump or lungs to breathe. It was and still is terrifying. I am still processing everything that happened. 

Monday May 1st we will be traveling to Rochester to be put on the heart transplant list at Mayo. Because he deteriorated so quickly he will be put at the top of this list. By Monday evening our team thinks they can officially have him listed. Then, we wait. We hope that a heart finds it’s way to us. The thought of this alone is horrible. To think that someone else has to lose their baby so that mine may live. There is no way to make that feel good. 

I’m mad. I am so mad. How did it come to this? My beautiful baby should not be in this situation. No child deserves this. I’ve found a community here of nurses, heart moms and other sick kid moms that I never knew existed. Lately they are the only people I want to talk to. No one else can understand what this feels like. They have empathy, they don’t pity me or my son. They understand the lingo and we support each other in our small victories. We cry with each other on the bad days. It’s the best club that I never wanted to be a part of. 

Finn is making me stronger, better and smarter than I ever thought I could be. He has made me appreciate and admire Asher more than ever. He has taught me hope and despair like I’ve never known. There is a reason we are going through this and we may not ever fully understand it. I love this child so deeply I ache. I hurt all the time for him. If they would let me, I would be hooked up to ECMO so that I would know what he feels and sees, how it helps and hurts him. What is it like to be on the sedation medication? I want to feel that for my son so I can full understand. 

Jeff said it best - rest, Mayo, heart, go home. Our new to-do list. We don’t know how long we will wait or how he will handle the surgery or anti-rejection medications. But, before we can worry about that, we need to get to Mayo. After that we need someone to offer us their gift. Then, we start to heal. Finn will get a heart, he will get better. I have to believe that. I need him. He is the other half of my whole heart. 

April 29, 2017

[finnsjourney-blog]

Danger is my middle name

When I was pregnant with Finnegan we nicknamed him Danger. It popped up when I was searching for baby names one day and we thought it was hilarious. Would anyone really contemplate naming their child Danger? Every week when I would get my pregnancy updates it would say “Danger Olson is the size of a cantaloupe” or whichever fruit was comparable to my sweet boy's growth. It always gave me a laugh.

-

Finn had a tough weekend. He lost his NJ tube, twice, and had a hard time recovering from the stress he went through to get it replaced. Then early Sunday morning he was quite sweaty and his PICC line slipped out. All relatively small things, however his heart condition doesn’t give him much reserve energy to be stressed out. He was clearly agitated, crabby, sweaty and tired. Not the sweet child we saw smiling and playing the week prior. Since he was born I have always been able to console him. By Monday and Tuesday even my touch wasn’t doing the trick.

Between losing his PICC line, NJ tube and our inevitable trip to Mayo for eventual listing, our team decided that Finn was going to require more permanent accessories. The planned to place a Broviac line and GJ tube on Wednesday. Of course, as always, I was upset but knew it was what is best for him. I was terrified because he has not been sedated yet and to do the procedures they need to intubate him. Sedation comes with risks for anyone, let alone my brand new baby with a severe heart condition. My fear was valid. At least I had time to plan and process things. Right?

Finn is impatient. I should’ve known by his speedy entry into the world. This kid wants to be early. Not too early, but definitely before we are ready for him. On Tuesday Dr. Rood called me at work and shared that he was having some significant work of breathing and she wanted to give him additional help. They had already added the BiPAP back earlier in the day and it wasn’t cutting it. Time to try NAVA (Neurally Adjusted Ventilatory Assist). Basically a more synchronized breath on the ventilator. I was already on my way back to the hospital and told her I would see her soon.

When I arrived I saw people crowded outside and inside his room. The big glass doors were open and the first person I laid eyes on was Cheri, the chaplain. My heart sunk and my eyes started welling up with tears. Dr. Rood, several nurses, respiratory and more were there. They had Finn laid flat and were helping him breathe. It looked bad, the worst I have ever seen him. I could see him wriggling and watched his chest retract. He was grunting with every breath. Dr. Rood informed me that I needed to call Jeff and that he needed to be here because they are taking him into emergency surgery. He was getting his Broviac placed immediately. She felt that he needed intubation to breathe and was not comfortable leaving him overnight without immediate access. An IV wasn’t going to cut it. An anesthesiologist and surgeon were there before I could process what was happening. We started talking risks, bleeding out and ECMO. I told Finn over and over again that I wasn’t done with him yet. That we have too many songs to sing, books to read, zoo trips and playgrounds to visit. That we haven’t even made it to the fun stuff yet so he had to hang on. It’ll be worth it, I promised him. Jeff showed up, we kissed him, loved on him and off to the OR he went.

It’s hard to laugh anymore. Especially here in the hospital. One of the respiratory therapists, Sheri, kept talking about how Finn was being such a buggar. That he was messing with all of our plans and making everyone’s lives a pain in the butt. That he was scaring everyone on the floor. They all adore him so much now and none of them want to see this sort of situation happen. I told her it’s our fault. We called him Danger when he was in the womb and he took me too seriously. They all got a kick out of that. He definitely has lived up to that nickname. They laughed and laughed. Encouraging us to rename him when we come out on the other side of this. Finnegan Danger Olson, or if he keeps pushing it, Finnegan Moore Danger Olson. This made waiting a lot easier. Having a smile with the sweet people who care about him here.

The OR nurse called. They had successfully sedated and intubated him. The scariest part was over. Placing the Broviac is rather routine, but still comes with risks. I was mostly concerned with the initial sedation so my fears had been calmed. The surgery was over before we knew it and they were wheeling our baby back to his new room. Room 8. We are back in the center of the action. Our room is big and right next to the nurses station and doctors’ office again. We were back to full time nursing coverage. This kid likes the attention.

There was a lot of work to get him situated after x-rays and assessments. The hooked up a lot of new IVs to his Broviac line, inserted an arterial line to monitor blood pressures and retaped his breathing tube. It was pretty intense to watch. People kept coming and going, reviewing labs, pulses and looking at the screens. As far as I could tell, he seemed drugged up but comfortable. What do I know? Our evening intensivist called for a transfusion. His hemoglobin was low and he was looking rather pale. He needed the extra blood. I was concerned because we had previously been told that a transfusion could affect his transplant status. Dr. Huntley talked me through it, called Dr. Vezmar and we decided to move forward. He quickly improved and his numbers got better.

After an uneventful night and morning Finn went in for his scheduled procedure to add a surgical feeding tube. He did well and now he has two after market accessories that we can go home with if needed. These are more permanent solutions to what we had previously been doing. He is going to need access and nutrition throughout the next part of our journey and hopefully this will make it all easier long term.

Speaking of our journey, we have officially received the green light to move to Rochester. Our team said it’s time, especially after the last few days. On Monday, May 1st we will be on the road (literally and figuratively) to listing our sweet Finnegan for a heart transplant. The process should take under two weeks. We expect that by his four month birthday (May 13th) he will be waiting patiently for the gift of life. It’s bittersweet. I don’t want to leave the care we’ve received here. The doctors and nurses have become a family to us. They love our son and we love them. I’m scared. It’s the unknown. Will they love Finn the same way? Will the nurses hold my hand and sit with me when I need things explained for the 5th time? With the doctors hug me when I’m crying? Will they ask how Asher is and care about us as a family? I hope so. I’ve been told it’s a culture shock and that they do things differently down there. They aren’t a children’s hospital with family centered care, but a hospital. A big machine. But, the machine that will save my son’s life.

April 26, 2017

[finnsjourney-blog]

One year ago

One year ago my life was vastly different. We were a little family with a gregarious 18 month old heading to Florida to stand up for my best friend as she got married. I was waiting for you.

Exactly one year ago my life started to change in ways I would not, and still don’t, completely understand. It was today, the very day you were conceived, that your misspelling took place. The anniversary is bittersweet. I wanted another baby with all of my being. After having Asher I knew I was meant to be a mom, that it was my calling. I had never felt so in my element as I did when I became a mommy to that little boy. I wanted that again for me, and for your brother to have a sibling. I wanted you.

I wish I could go back to that day and run a spell check on your genes. To be able to ensure that you would never have this sort of start to life. You don’t deserve to live in the hospital being poked, prodded and looked at like a specimen. You should’t have to be put back together differently to be a normal little boy and to sleep in the comfort of your own crib.

I am so sorry dear Finn. I’m your mommy and I am supposed to make it all better. I can’t.

One year ago you started growing inside me and I wouldn’t change that for the world. I only wish my heart would fit inside of your chest because it already belongs to you.

April 23, 2017

[finnsjourney-blog]

“Not if, but when...”

Today my son’s heart was referred to as a “ticking time bomb” on more than one occasion. The heart that grew inside of me and gave my son life will also ultimately be responsible for taking it away from him. 

Week after week I listened to that heart beat on the doppler at the midwife’s office while he wriggled around in my belly. I made assumptions based on old wives tales about whether he would be a boy or girl because of this heart beat. Today I am being told that no matter what we do, the heart we grew together just won’t be good enough for him. 

I guess I shouldn’t be so shocked by this. It’s not news. Our doctors have always put this outcome on the table. Regardless, I was still hopeful that it wouldn’t happen. Today Dr. Vezmar told us that the question is not if, but when. Do we wait until he gets older and stronger or do we do it sooner and let the healing begin? He mentioned that we were “lucky” Finn hasn’t had a major event that has put him on ecmo (heart-lung bypass) or that he has other failures due to his heart. That we were able to take him home for a while and he didn’t have an arrhythmia or worse. We are “lucky” not to be forced into this decision in an emergency capacity.

His quality of life will greatly improve after transplant. Immediately, everyone tells me. He will have a lot of anti-rejection medications at first but they will taper off. There will be a lot of appointments but they will be check ins and biopsies, not too invasive (as long as everything goes to plan). All in all, he will have a “normal” life for the most part. Fix the heart, fix the baby. The months of waiting, the days of surgery and the months of recovery are going to be impossibly hard. But, after it’s all over he will come home. He will run and jump and play with his big brother. Finn will not however come home with the heart that is currently beating in his chest.

I didn’t expect this. I don’t know how I missed it. When I look back I think it was always there but I had this blind hope that it wouldn’t be this way. A heart transplant, in my baby? This won’t happen to him, to me. That is something that happens in the movies or on a soap opera. According to Dr. Vezmar it will happen to us and within the next year.

After a long talk about our upcoming reality, he showed us Finn’s echo and that of a normal heart. He pointed out the size, thickness and the turbulence his blood has to overcome to keep his body profused.  I am amazed by our little warrior, he is so tough. His heart takes up 80% of his chest, barely leaving room for his lungs. The thickness of the walls of his ventricles make it a wonder his heart works at all. I need him to know the feeling of a properly working body. He doesn’t have to be tired all the time. His energy should be spent on playing not breathing.

I’m heartbroken and grieving. I am terrified and anxious.This is not the title I expected us to hold. Heart Mom and Heart Baby. I’ve been reaching out to other Heart Moms and am told that these feelings will never, ever go away. But they start feel a little lighter at times. Tonight I am struggling, not only with my grief and anxiety but with the fact that it will never completely go away. This isn’t a temporary setback but the path our life is taking, forever. I don’t want to feel sad. I don’t want to associate my son’s life this way, but I have to accept that this is the roller coaster we are on and never going to get off. Because of that I have to embrace the highs for everything they are and know that the lows will continue coming our way. 

I am lucky though. Not because he didn’t have an arrhythmia or cardiac arrest yet. I am lucky because Finn chose me. I am fortunate that he thinks I am strong enough to sit next to him and hold his hand on this roller coaster. That he picked me to help lift him up when he is experiencing the lowest lows and celebrate the highest highs right beside him. I get to be there through all the achievements he will have, with someone else’s heart beating inside his chest.

April 21, 2017

[finnsjourney-blog]

“Where do you live mommy?”

My heart broke into a million pieces on 394 this morning. 

With everything going on Asher has been a champ. He has amazed me with his compassion and resilience. I’ve been so worried about him even though he has been nothing but strong, thoughtful and his beautiful, vibrant self. He energizes me with his spirit and sense of humor.

It is so hard to balance the needs of a medically fragile child and a rambunctious toddler. I have tried to make Asher feel loved, appreciated and cared for while still being available for doctors, nurses and Finn’s social and developmental needs. There is no right way to do it and I often question whether I am going to permanently damage one of my children. These boys are my life and I need them to be secure, happy and fulfilled humans.

In effort to spend more time with Asher I went home this morning to drive him to school. At first he was resistant. At this age they love routine so he said “no Mommy, Daddy brings me to school and you pick me up.” But, he finally gave in. On our way in he asked me  “where do you live mommy?” I paused. My baby doesn’t know I live with him. I cannot even put into words how that felt. I assured him that I live at home with Daddy, Asher, Finnegan and Sassy. He didn’t agree. He told me that “Finn lives at the hospital and it’s really far away.” This is a special kind of hurt that is still crushing me hours later.

Today begins week 4 in the CVICU. I wish I was still counting how many weeks old my son is rather than the amount of weeks we are tied to a bed. But, that is no longer our reality and I have to accept it. Last weekend I had to take Easter photos and make small talk like my infant isn’t in the ICU. Sometimes it feels impossible to be “normal” with everything going on. I feel guilty for even trying.

We’ve officially made it longer without the BiPAP than last week. Small victories. During afternoon rounds the doctors agreed that he looks great. One even said he looks like he is doing “better” on straight CPAP. We talked next steps and timing which are all sort of relative to what Finn wants to do. Same thing as always. Breathe, eat, go home. The doctors here would like us to be evaluated weekly by Dr. Johnson. Obviously, that isn’t a positive sign since we were hoping after last Friday to never see him again. Transplant is a real possibility and I am happy they are monitoring Finn so closely. Once again, I have to surrender to this reality.

Dr. Carter, cardiologist, said to plan on another 4-6 weeks and that is “best case scenario.” Ugh, gut punch. I knew it deep down, but living like this for another month or longer seems impossible today. This afternoon Finn seems great and barely is acting like a sick baby, but we know that can change in an instant. 

I want to take my sweet baby home or even just for a walk. I want to pick him up without the help of nurses and setting off alarms. I want Asher to see that he still lives with us. It would be so nice to sleep in my own bed or cuddle up and watch a movie with my husband. I know it’s not our reality right now and once again I have to accept that. I will continue to be strong and do my best to hold it together for my boys as best I can. I don’t have a choice.

April 19, 2017

[finnsjourney-blog]

A week later

I haven’t written an update for several reasons. One, after last week’s positive progress we took a few steps backwards. Finn didn’t sustain the BiPAP wean and after about 24 hours we put him back on. That was really hard for me. It felt like we were moving in the right direction and then just as we took two steps forward we were taking a pretty big step back. Two, processing. I’ve needed some time to process a lot of what has been going on. 

Since last week we’ve received the genetic findings. It’s official, Finn has an extremely rare genetic mutation that directly ties into his heart condition. We only know of five other people, yes FIVE, with this same mutation. All five have/had a hypertrophic cardiomyopathy. Of those five we only have data on three of them. Basically, the findings tell us that yes, this is the reason Finn has a broken heart, but not necessarily how to fix it. Because the sample size is so small and the information is so limited we will continue to let him tell us how to treat him.

The news of the genetic results is bittersweet. I am relieved that we know why and how his heart got to this point of failure. It’s reassuring to know that there is nothing that we could’ve or should’ve done differently to avoid it. It is, however, hard to accept that something like this can happen to anyone, let alone my child. As I said before, I did everything “right.” I read all the books, I ate right, I was active, I didn’t eat sushi or lunch meat or even have a sip of wine. I didn’t get a flu shot and I took my prenatal vitamins. I slept on my left side and talked to my baby daily. I was building my own super baby. How can a spelling error, a typo, put my whole life into such a tailspin? Did I do something to deserve this? We know he surely didn’t. He is so innocent, so sweet. Finn doesn’t deserve this, he should be at home in the safety of his mama’s loving arms and whining because his brother plays just a little too rough.

On Friday the 14th we met with the Mayo transplant cardiologist, Dr. John Johnson. Now that we know what we are dealing with we also know that we are eligible for a transplant should we need one. I came prepared (surprise!) with a notebook full of questions. Dr. Johnson sat with Jeff and I for almost three hours answering each one in great detail. I learned more than I ever thought I would need to know about hearts and trading one in for another. For example, did you know that before the age of one a baby can receive any blood type for a transplant? Also, the average waiting period for a child is 2-4 months and the actual surgical procedure takes about 20 minutes. He compared it to putting together simple Ikea furniture. It’s the after that is difficult. The anti-rejection drugs and problems associated with trading one disease for another. If you have any other questions I am sure I asked them and have the answers. Try me!

It turns out Dr. Johnson has a 3 month old boy. Born January 1, 2017 and therefore only 12 days older than our Finnegan. Knowing now that we qualify for a heart transplant and that he had met Finn I asked him point blank, “If that was your son in there, would you choose transplant?” He told me, “Not now.” That his ultimate goal is to NOT transplant a child, anyone for that matter. He thinks we should give Finn a chance to grow and see what he does. Based on his physical presentation we don’t need to think about transplant as an immediate need but it’s good to be informed on our options. Hopefully we never need to me Dr. Johnson again, but if we do we at least have a better idea what we are dealing with.

The rest of the weekend was uneventful. We’ve upped some of Finn’s drugs now that we know about his genetic situation and we let him rest with the increased respiratory support. He needs to get bigger and stronger so we can get back to eating and go home.

This morning during rounds Dr. Dassenko said he wanted to wean Finn’s BiPAP (again). I was shocked but excited. This time I hope it sticks. When he came in to act on the orders he said we need to keep him warm so that his heart isn’t working too hard to keep his blood flowing to his extremities. I passively said that it would be easier if he could wear clothing. He looked at me, smiled and said “okay, as long as they have snaps.” YAY, jammies! Once again we are starting to make strides in the right direction but I don’t want to write about it and jinx us again.

Send all your positive vibes, prayers, love and light that we can move ourselves forward. I am ready to take my baby home and start the healing. We need to put our family back together again and we can’t do that living in separate cities.

Today, I am feeling hopeful. 

April 18, 2017

[finnsjourney-blog]

Moore Progress

Today is significant. Today we made progress.

Finnegan’s middle name, Moore, is in honor of my Grandma Phyllis. It was her maiden name and a good strong Irish name. I knew that I wanted to have my child’s namesake somehow connect to her because she and I were so close. Finnegan Moore sounded right. Today is her birthday. Today she smiled upon us and helped us hit some of those milestones we've been aching to reach. The first being weaned off our BiPAP and are now on straight CPAP. When I left for work this morning they took him off the respiratory pressure and he has handled it like a champ. I was so worried that it was too much, too fast. That he would “fail” and we would be forced to add it back. I should’ve never underestimated my little warrior. He barely noticed. We will be on a standard high flow before you know it.

When I returned from work our darling nurse, Emilie, told me to pack my bags. YES! We got moved all the way down to room 12. We have a corner unit with beautiful sun shining in from two angles. It feels bigger and nicer, but I am sure that is just in my head. It’s the significance of moving down the hallway that means the most, not the accommodations. We are still technically “ICU” rather than general care center, but we are the second to last room on the ICU and that means something. What a fabulous day for Finn.

I know Grandma Phyllis was sending us her birthday love today and Finn gladly rose to the occasion. Thanks Gram!

Whenever we get handed off to a new nurse I love listening to them describe my son. They talk about his vitals, stats and all that normal nursing details. What I love is listening to them talk about his personality. Everyone always talks about how stinking cute he is, how sweet his coos are, what he likes and doesn’t like and how to settle him when he is upset. Then, the conversation always comes around to Finn and his mama. Each time the nurses hand off they tell our new friend about the special bond that we have. How mama makes everything better. How we can stare at each other and speak our own language for an hour straight. This boy and I have such a special bond. We have been through hell and back together and we are both still smiling. I am so in love. When I come in the room he smiles, when I walk away he gets upset. The bond is undeniable and everyone here knows it.

Goodnight my sweet boy. Tomorrow marks the beginning of our third week in the CVICU and the continuation on our road to healing.

[finnsjourney-blog]

Work work work work work

Today was one of the hardest days yet. I went back to work, a week earlier than I had originally planned. My boss and the wonderful company I work for is allowing me part time return to accommodate Finn’s immediate medical needs while we wait for more information and ideally a discharge. They have been so supportive throughout this journey and I honestly don’t even want to think about what this would be like without having this second family behind me. It was scary and sad and exciting all at once. 

I was able to wait for rounds and listen to the plan for today. I even got a little play time and smiles before I left the hospital. As expected we are continuing to very slowly wean Finn’s BiPAP down and that’s it. He is struggling a bit with each change but tolerating it. We haven’t had to add anything back so we will mark that one in the win column for now. 

I stayed at work for a few hours, sat in some meeting and did a little catch up. It wasn’t hard to be at work, it was hard to answer basic questions. Simple pleasantries have such a different meaning now. My triggers are “how are you?” or “how’s Finn doing?” People don’t know how hard it is to answer those questions. They mean well and I do think they genuinely are excited to have me back and to know how I am handling the transition. This whole thing would be hard with a healthy baby. Going back to work with a “normal” baby at three months is gut wrenching. Leaving them with someone else to care for them all day is hard enough. But, now I am leaving him not in the loving arms of teachers but in the care of nurses who are taking care of his needs, not necessarily nurturing him. During my pump session I caught up on emails and called our nurse, Emilie, to check in. She was so sweet and read to Finn while he was awake. She played and made sure he wasn’t just staring at the stark white walls of the hospital room he has been in for nearly two weeks. When I returned in the afternoon she had music playing and was talking with him. A little relief set in. He was once again happy to see me and engaged actively. I need this affirmation today.

Nancy, our OT stopped by with some toys this afternoon. I knew Finn was tired but I think it’s important that he is practicing his therapy when he is up for it. She was moving and shaking him all around. He reached for toys, smiled, held his head up and showed off his sneaky tricks grabbing of his tubes and wires. It’s a fine balance right now because he needs to spend his energy getting better. When you are as sick as he is with as large of a heart you require every ounce of energy to get better and keep your body running as it should. Our night nurse, Chris, would rather that we keep him calm and rested than work on therapy but I have a hard time thinking that he should just lay there when he is awake. I do know that if he expends too much energy and loses weight there will be additional interventions needed.

Tonight I went home and had dinner with my big boys before returning to the hospital to work a little more and turn in. Finn was already sleeping which was disappointing, however to Chris’ point a good thing. 

Brina recently shared an article with me that I could relate to all too well. After reading it I decided to order the book “When Things Fall Apart” that the author references. I am not religious but I think at times I am spiritual. 

The world is a terrifying place. We manage it by believing we can control it. And when it hasn’t been controlled—when it doesn’t bend to our wills—we either look for something to blame, or we surrender. 

I don’t know what the results will tell us this week. Some days I am hopeful and I still believe that I can alter our future by hoping, wishing and picturing ourselves there. Other times I am defeated and terrified of what our future looks like. Either way it isn’t fair to the little boy going through this daily or the slightly bigger boy that plays and sleeps peacefully at home. No matter what, it’s going to be hard and we are never going to be “normal” in any sense of what I am used to. But, I do know that I wouldn’t want anyone else but him. He is my Finn and I wouldn’t trade him for the world. His broken heart completes mine. 

April 10, 2017

[finnsjourney-blog]

Milestones

The milestones for Finn are a lot different than the ones you use for a typical baby. Every week I get an email saying “Your XX Week Old” with a list of exciting things your baby should be doing. It obviously upsets me but I can’t quite hit “unsubscribe” yet. If I unsubscribe from the emails it feels like giving up. As if it’s admitting that Finn will never be normal or hit those regular baby milestones. That may seem strange but I am not ready to give up yet. I have faith that he will catch up as soon as we can get out of here. This baby has a determined mama and he is clearly stronger than anyone has given him credit for.

We are now paired with another child which means that our nurse monitors/takes care of two kids at the same time. This is an important milestone in recovery and we hit it today. It means that Finn is stable enough to not require full time care. The baby we are paired with had some sort of heart surgery. He is a tiny little babe who was clearly premature. The nurses can’t share info with me but I see him and he is significantly smaller than either of my boys were at birth. Today when I came back to the hospital I saw them putting jammies on him. It’s crazy to think that this is a milestone I am looking forward to. Being able to wear jammies is a huge step here. It means he is stable, that they aren’t constantly watching his respiratory function and don’t need immediate access to his fragile little body. Seriously, that is what I am looking forward to - putting clothes on my child. Twisted, isn’t it?

There are several other milestones I am anxiously awaiting and will be tracking closely. There are the obvious ones like no more respiratory support or removal of his PICC line and then the one that includes the reason for us being here, removing the feeding tube and tackling the eating issues. It also includes moving down the hall to the care center section of the floor. This will indicate that we don’t need to be seen by the doctors as much and there is less anticipation of an event happening that would require immediate assistance. It sounds so much more simple than it is. We add quickly and take away slowly. I'm grateful that we haven’t added anything since mid last week but the slow wean feels like it’s taking a lifetime.

April 9th, 2017

[finnsjourney-blog]

Saturday with Asher-man

Finn’s night was pretty uneventful and we haven’t changed anything since early yesterday. Physically he seemed a lot more tired today and even a little pale and sweaty. The NP, nurse, cardiologist and physician all checked on him early on, however no one seemed concerned. “He’s okay, we will keep an eye on him” was the response I continued to get. From my perspective he looked worse, but all of his labs and monitoring was telling us he was doing fine. I was emotional and scared he was dipping again. Dr. Gremmels told me to go home. Be with Asher. I had already planned on spending the day with my big, but I think it was helpful to hear him order me to do it. I am no good to anyone when I am this tired, scared and sad. Plus, Finn clearly needed to rest.

Hanging with Asher rejuvenates me. He is so charming and fun. His imagination and sense of humor inspire me. We didn’t do anything out of the ordinary but it was an extraordinary day for me. We played in the back yard, went to get smoothies, napped, went to the park, read books and snuggled. This mama needed some Asher-man love. He was especially affectionate and was clearly in need of some mama love too. 

He misses his brother though. He asks me when Finnegan is coming home. The other night he told me that he can help his baby brother come home, he will show him how to get here. It’s so sweet. This kiddo was born to be a brother. We need to get that baby home so he can go back to looking out for him. In the meantime I will continue to share my time as best I can. This weather and being able to be outside to run around the park with my big guy definitely was a huge day changer. He is amazing!

I called a few times to check on Finn and all was well in his world. He was mostly resting with some short spurts of awake time. Not much to report and no changes to his care. When I got back to the hospital tonight Finn was stirring. His nurse, Erin, told me he had been so pleasant and happy giving her lots of smiles. What a relief! He woke, smiled and cooed at me. He was genuinely excited to see my face and that felt so good. We talked, I told him about the day with Asher and thanked him for letting me go outside to play with his bro. I also told him about all the fun things we will get to do when we get out of here so he better hurry up. 

April 8th, 2017

[finnsjourney-blog]

Am I doing this right?

There isn’t really a book or manual to teach you how to be a “hospital mom” with a toddler (and husband) at home. There are no recommendations or best practices on how much timeto spend at the hospital with your sick baby or at home with your healthy one. There are no studies, that I am aware of, that outline the trauma or permanent damage to a baby when it’s abandoned in the desolate hospital with only nurses to love them. There is no way to know if I am hurting Asher’s ability to trust, cope and feel secure because I am not there as much as he is used to.

Everyday I struggle. Everyday I cry over it. I don’t know who needs me more. How do I balance my time, effort and my love. It was going to be a struggle to be home and healthy with two kids, but now my children can’t even be in the same room. If I am with Finn, I feel guilty that I am not spending quality time with my gregarious Asher. When I am with Asher I worry that Finn is scared or not being picked up when he is crying. It’s impossible to be both places at once. I literally have to choose one child over the other.

Tomorrow (Saturday) makes this visit to Children’s longer than our stay in the NICU. For some reason that really hit me hard. Coupled with Finn’s lack of progress I feel a deep dejection. He didn’t regress, but he didn’t make the progress we hoped for. The doctors didn’t seem as optimistic today. The weekends are long and hard here. There is far less support medically and the home balancing act gets even harder. Time sort of stands still. Every minute I am with Asher, Finn is alone. Every time I spend the day with Finn, Asher misses his mommy. Of course Jeff is doing the best he can but rarely are we ever together. It’s man-to-man coverage and it’s exhausting. In the NICU the nurses would always say “Finn won’t know you aren’t here, but Asher will know you are home” as a way to encourage me to go home. Here in the CVICU I feel like the doctors and nurses value my inputs and Finn DOES know I am here. Often times I am the only one who can calm him down. I keep him active and engaged. Toys, mirrors, swings, stories and songs. The nurses can’t do that. He whines when I walk across the room or put him down to pump. I just don’t feel right about leaving him here for hours on end, alone.

I will never know if I am doing it right and that feels pretty awful. So many of the babies in the unit don’t have their mom or dad here at all. They just sit in their cribs, watch movies or get minimal PT/OT attention. I can’t do that to this sweet babe, it just doesn’t feel right for a mommy to be away from her brand new baby. Jeff has got the home life taken care of and doing a killer job, but Ash needs his mama too.

I am doing the best I can, I just need to convince myself of that.

April 7, 2017

[finnsjourney-blog]

Welcome to Holland

Finn is visibly feeling better now. He is more awake and alert. He was offering up smiles and coos while we read books and sang songs last night. This morning he woke up and cried for his mama. It’s obvious that he is a different child than he was the past few days much more relaxed and not working hard to breathe anymore.

Our night nurse turned down Finn’s oxygen levels so he is now on room air with a high flow. Just moments ago the respiratory nurse came in and decreased his flow by two more points. We are weaning his support which means that he is clinically doing better. I learned from our time in the hospital that we add things quickly and remove them slowly. How I personally gauge our progress is whether we are adding or subtracting care. Today we are monitoring him to see how he does as we slowly wean support, other than that we likely won’t have a lot to report on.

We can’t start talking about oral feeds or working on the problem we came here to solve until he shows that he doesn’t need the respiratory support. I am told that won’t happen until next week, at the earliest. So, over the weekend we will continue to pull back until we don’t have any breathing support. He appears to be doing really well with the changes we have made so far. I feel like my happy baby is back. He is going to sleep rather than passing out from exhaustion.

Jennifer, our nurse last night, also shared with me a profound essay that really touched me. It’s not about changing our situation. It’s about changing the way we look at it.

WELCOME TO HOLLAND

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

We are going to proactively meet with a transplant team next week. Just to talk. It will help me process our potential outcomes and be able to do what I do, ask questions. It doesn’t mean we are getting on a list, it doesn’t mean Finn needs a transplant, it just means we are going to meet the transplant team. Education. I asked two questions today to our cardiac physician. One I knew the answer to but had to ask it because it makes me sad to think about. My first question was “does another baby have to die for my Finners to get a heart?” Of course I knew that this is the case. I had biology and anatomy classes. But when you think about something like this you can’t help but think that for my child to live someone else has to lose theirs. We talked about it, the positives and negatives. My second was life expectancy and quality of life. That is a question I have to save for the transplant team. I was encouraged not to Google it because the information is not accurate to HIS types of needs. That no one talks about or blogs about their happy child who lived for 50 years with a transplant but those who lose loved ones or have complications do. That sometimes, often times, one transplant isn’t enough. I was informed that a lot depends on the person and whether they take their meds and go to their appointments. So, I won’t Google it. 

I am still holding on to bucket A. Dr. Gremmels, the cardiologist, said that is a perfectly healthy and okay place to stay for now. They also call him “Dr. Sunshine” here, but I like it. He said he has plenty of kids with HCM that he sees that have not received a transplant and are doing well. So, column A it is. Today at least.

[finnsjourney-blog]

A, B or C

Overnight Finn remained stable. We haven’t added any intervention so we are considering that a “good” thing. Good is relative as we learned back in the NICU. His heart rate had two major scary drops last night (60s and 50s) but they came back up so quickly that no one seems overly concerned. It’s definitely something to watch but no immediate action is being taken.

The intensivist and nurse attempted to fortify Finn’s feeding today. As a pro-breastfeeding mama bear who prides herself on being knowledgeable along with an arsenal of research based information I quickly jumped in. Before we were admitted I did EVERYTHING in my power to get Finn to gain weight. This included bottle and syringe feeding, weigh ins for feedings to see what he was gaining, I met with an extremely experienced lactation consultant and even had my breast milk composition tested. When Finn’s team put in the order to add 10% formula to his breast milk I asked why. They said they wanted to increase his caloric intake to 22 calories per ounce. I knew he was gaining weight because he was meeting his one ounce a day goals. I also knew from my analysis of my BM that it was an average of 23.5 calories and 50g of fat per ounce (my lowest milk at the beginning of a feed was 22 and highest was 25). I argued that math and science told us that this is unnecessary. He was gaining, he was tolerating his volume and my breast milk met or exceeded their caloric goals. The nurse talked to the nutritionist and doctors and they finally agreed that it wasn’t needed. Score one for mama bear. They definitely have Finn’s best interest in mid, but that doesn’t mean asking questions and knowledge sharing isn’t needed. I am proud to be an advocate for my son.

Dr. Vezmar, our primary cardiologist, returned from vacation today. We had our monthly planned in clinic visit scheduled for Friday so I am sure he was surprised to see us and hear of the last week’s activities. He was up to speed on our current situation and wanted to talk both long and short term outlook. Short term we already knew what we have to do. Rest, kick the rhinovirus, eat. His best case scenario is that will take a month. I knew we would be here a while, even weeks. But when weeks turn to a month (or more) it starts to hurt a bit. Long term we have three general scenarios: 

A.) Finn gets better clinically and potentially better overall. We still know that he may not show any signs of HCM improvement until as early as six months. Dr. Vezmar believes that this is more of stretch now that we’ve seen what a little common cold can do to our boy. If Finn came in coughing, sneezing and runny nose with signs of labored breathing and other issues it makes sense. However, he hasn’t shown any outward signs of the rhinovirus. So this cold isn’t a bad one and it took him down. Hard. Option A is very hopeful and Dr. Vezmar said it’s okay to hold onto this one for now. 

B.) A heart transplant. This is frightening. I don’t know anyone who has had one and I refuse to Google the statistics yet. A lot of things will have to align before we go down this road or even get on a list. He will have to have a lot of tests to be sure that he qualifies. This could also be off the table depending on the results of the WES and some other muscle and skin tests. 

C.) We can’t do anything. At all. Other than keep him safe and comfortable. There isn’t much to say about this option. Basically if he has some metabolic reason for his HCM he wouldn’t qualify for a transplant and likely wouldn’t get better on his own.

Of course there are scenarios in between. Scenarios where we find out that there is a genetic reason for his HCM and are able to treat it or at least some symptoms. It’s medicine and it’s not black and white. They are always coming up with new treatments and gaining knowledge on hearts. Throughout our stay here I have seen children come in, get open heart surgery and leave within days. Children are resilient. Medicine is always changing and they can do remarkable things. It just may take time. We will do whatever this child needs no matter how long it takes.  

He WILL get better. I tell him that everyday. The doctors are doing everything they can. I am doing everything I can. His dad and brother are doing everything they can. It’s up to him and he has all the support and love that he needs to do it.

April 5, 2017