Thank You Party and Celebration

 

After lots of discussion I think we have finally decided on a plan for celebrating our son.

One of the things that has stuck with us throughout Rowan’s life is how much everyone’s help allowed us to truly spend time with him and focus on our family.

So what we would like to do, is throw a party to say thank you. If you brought a meal, contributed to a gift card, sat with Rowan, visited us, made something, sent us something in the mail, came up to the hospital, brought drinks, or took pictures, or ANYTHING to help us throughout the last year, we would love for you to join us.

On Friday, from 6-9pm we will be opening our home up.  We are going to have snack foods and drinks available and we would love to just visit with all of you and express our gratitude. 

We will also be showing some of our favorite pictures of our little man and remembering his amazing life. We will be speaking at 6:30 and at 8:00 and we will be toasting our little hero as well.

Several of you have asked about how you can donate in Rowan’s honor.  If you would like to make donations, there will be boxes available at our home for the Might Oakes Heart Foundation (supporting families of children with CHD at St. Louis Children’s), the Cystic Fibrosis Foundation, and Mended Little Hearts of Tulsa.

For those of you unable to attend, we will be posting a video of our thanks and the slideshow afterwards.

I will post directions to our house (which is near 131st and Sheridan) on the day of so that I can remove the post afterward.

We hope to see you there so we can express our thanks!

*Please don’t wear black! We are celebrating Rowan and thanking you! Wear something colorful and COOL because it’s HOT outside.

Hope to see you there!

Making Arrangements

Houy!

Ok, so this is hard to talk about and I assume it will be really hard for most to read.  When Rowan died, he left behind his body, and his body needs to be retired. Most people don’t talk about it, but I felt like I wanted to share how we have managed making final arrangements for Rowan’s with everyone who is reading, largely because we learned some things and some unexpected things happened and I wanted to help other parents. Doc and I are fortunate to have all of our parents living, so we had never had to make final arrangements for someone before.

First off, when Rowan was on hospice, we knew we would need to make arrangements, so our hospice social worker started asking around and trying to find a funeral home. We were really grateful to have someone available to help us know what to do. Floral Haven is a funeral home in Tulsa that will cremate children for free.  Some funeral homes do and some do not.  They waived all fees for us, which was a kindness as cremation and burial fees are expensive. We also talked to a nurse who lost a daughter to SIDS and she used Floral Haven and had glowing recommendations.  So we had a service provider…we had to determine what services we needed.

Burial vs. Cremation? Doc and I knew cremation was what we believed in for us long before we even conceived Rowan.  We decided we would have him cremated.  We intend to scatter his ashes – half in Tulsa and half in St. Louis. The funeral home will provide us with a temporary urn to hold them until we can scatter them. So we knew what we wanted and who would do it. This was helpful because when Rowan died, we didn’t have to pick a funeral service to have someone collect his body.

When Rowan died, we called the hospice service.  They sent their nurse out to do a formal assessment and document his death.  The poor nurse who came out doesn’t normally see pediatric patients and needed to step out to give herself a moment after seeing our little man.  She was very professional and kind about it.  She then called the service that would come get Rowan’s body.

It took what seemed like FOREVER for them to come get him.  When the man walked in, he laid out a think plastic blanket on our bed so we could lay Rowan’s body on it.  Doc picked Rowan’s body up and laid him down on the sheet. The man swaddled Rowan’s body up and then covered his face with his blanket.  I panicked when he covered Rowan’s face. I didn’t expect that. The thought of him in the dark suddenly just panicked me.  I knew Rowan was gone and that what was left was really just his shell, but as a mother, I had that moment of fear and horror.  I just kept reminding myself that it wasn’t him. Rowan was safe and peaceful and free.  The man carried Rowan’s body out of our house.

I realized later that it was silly for me to worry about Rowan’s face being covered.  He freaking LOVED covering his face! We joked about his “wolf cave” that he put himself in all the time.  He loved having fabric touch his cheeks and loved dim lighting.  I think it was just part of dealing with the weirdness of seeing someone who is alive…and then not.  It’s hard to wrap your head around it.

So even though we knew we were going to cremate Rowan’s body, we also knew that we wanted to help kids like him if at all possible. Rowan’s body was taken to a facility to have an autopsy done.  Autopsy helps the medical world learn a tremendous amount about the body.  We believe that Rowan was a gift, and his final gift was to offer his body to the medical world as a means of learning.  We know something was going on with Rowan that we couldn’t fix. An autopsy may give some answers.  An autopsy may provide insight to what CF and CHD together can do. It may help another child. I think Rowan would have wanted that.

His autopsy was performed Sunday night and then Rowan’s body was taken to Floral Haven.

Today we went to Floral Haven for the first time.  The man we met with was so kind. He told us how cute Rowan was and even asked us some questions about his life. He wanted the blog web address so he could see pictures of Rowan and read about the amazing things he did in his life. 

He also gave us a teddy bear that matched the teddy bear the funeral home had given Rowan’s body to hold.  When I saw the bear I started sobbing. It was really a sweet cute soft thing. It even looked a little like Rowan.

What caused the sobbing was this.  I wanted to see Rowan again. Doc and I talked about it on the way to the funeral home…whether or not we wanted to view him.  And this was what I realized. I wanted to see HIM. I wanted to see Rowan and see him smile or see him sleeping peacefully.  That wasn’t what I’d see. I would see Rowan’s shell. Not him, just his body…the cruel sick body he was free of.

Now I had this image of Rowan (real alive Rowan) holding a little teddy bear like he held his wolf.  And that image was so cruel and mean. So sad because it wasn’t real. My son is gone. My son isn’t holding that bear. And that’s sad.

We put the bear in the car as we left the funeral home. When we picked up Evelyn, she found the bear in the car. She loves it.

Now I think of that little bear Rowan’s body is holding like the blue string around his wrist…just a connection to his sister. A small symbol of what he was and is to her. Something they both have.

In the last day, Doc and I have gone through most of Rowan’s things. We celebrated as we went through and disposed of his medical dresser. He had a WHOLE DRESSER of medical supplies. And know what? He doesn’t need it anymore!!!

We took apart his crib and stored it. Returned some baby equipment we’d borrowed and packed things to donate, so someone else can love the things he loved and poured his strength in to.

We have had Evelyn help us. We’ve talked about the things Rowan doesn’t need anymore.  We gave her some of Rowan’s favorite toys to remember him by.

Since Rowan went on hospice, Evelyn ditched her blanket.  She instead, used one of Rowan’s blankets.  She now has Rowan’s Mickey Mouse who is always with Evelyn’s Minnie Mouse doing the “hot dog dance”.  We offered her Rowan’s stuffed wolf, who is in many pictures of him.  She saw us trying to give it to her and started sobbing. “NO! That’s Rowan’s wolf! That’s Rowan’s baby dog!” and couldn’t take it. We have it for when she is ready. She knows how special it was.

Last night, I put Evelyn in bed and she was settling in when she suddenly shot up. “Oh no, Mom! I forgot to say goodnight to Rowan!” She ran out of bed and threw open Rowan’s door. I sat by her bed with tears suddenly streaming down my face, not sure what to do.  I heard her small voice.

“Oh. Rowan’s not here. Rowan’s gone. I cannot say goodnight to him.”

She walked back to bed, snuggled in his blanket, and said, “Mom, Rowan is gone. He’s okay.” I nodded, and shortly after she went to sleep. THANK GOODNESS she figured it out for herself. I mean, honestly, what the hell do you do when a kid springs that on you?! I just told her that I missed Rowan too, and that when I miss him and want to say things to him, I just say them to the stars and hope he hears.  I think Mufasa may have said something similar in the Lion King…..

We have been talking about ways to properly honor Rowan.  We are trying to find a location and determine availability, but once we have a time and place, we will let you know.

Thank you for your posts, comments, texts, calls, etc. Thank you for those of you who have celebrated his life! Thank you for loving on us and lending us your words of encouragement.

Rowan’s Last Day With Us

Rowan was always very awake and alert in the mornings. Yesterday morning Rowan didn’t really “wake up”.  He sort of moved around a tiny bit but didn’t open his eyes. Evelyn, Doc, and I ate breakfast together and Evelyn asked if she could go to her grandma’s house to play.  We told her that was fine and soon shipped her and her backpack off to Grandma’s House.

Early afternoon, I decided that I was going to hold Rowan and sing to him for a while.  We had spent some time catching up on laundry and cleaning the house with Rowan sleeping in the room with us.

When I went to pick him up, I realized that he was very limp.  He did not stir at all.  He was still breathing, but was comatose. 

Tears came as I realized that he was finally at the end state.  He wasn’t going to smile again or wake up or look at me or pull my hair.  We’d passed all of that.

I brought the candles into his room and Doc and I switched off holding him and talking to him.  Telling him stories, singing him songs, anything to let him hear our voice and know that he was not alone. 

We decided to call my Mom and ask her to keep Evelyn.  We didn’t think that seeing him in the state he was would make sense to her. We also thought that Rowan may have gotten worse because he wanted to die without Evelyn here to spare her the confusion of watching the event of death.

As it grew dark outside, I brought our candles and Rowan in to our bedroom.  I sat holding him, scratching his head softly like he always liked and holding his hand.  I had a text conversation with Becky (Oakes’ mom) and she brought up that maybe Rowan knew he needed to go but there was a part of him that was just very sad and heartbroken that he had to.

I realized that in all my conversations with Rowan about how he would be okay and we would be okay and it was okay for him to go, I never told him that he had to.  So I talked to Rowan and it went something close to this:

“Rowan, sweetheart. You can’t stay. I know it’s not fair. We want you to be able to stay and I know you want to stay too, but sometimes we cannot have what we want.  Just because we don’t like that your body cannot get better and you cannot wake up again doesn’t make it any less true.  We cannot change the truth. It is time for you to go. We can cuddle a little longer, but you have to go sweetheart. You will be safe. Wherever you are going you will be at peace and surrounded by our love. 

Do you see your blue string? Mommy and Daddy have an invisible one.  We will send you our love all the time. And we will stay with you. You have to do this. We can’t do it for you, but you won’t be alone.”

I held him for a few hours and as it was getting later and later, Doc and I decided we should try to go to bed. I told Rowan that I was going to make him a bed and we would be here in the room with him.  I brought in the pack and play and set it up.  I made him a bed out of his favorite blankets.  I laid him down in his blue and green (our family colors) outfit and covered him with his monkey blanket…and as I did, I noticed his pauses in breathing were growing longer.  I held one hand and Doc joined me, holding the other.

Doc placed his hand on Rowan’s chest.  His heart beat was slowing down.  He was only taking soft breaths three or four times a minute. We told him we loved him. We told him it was okay. We told him we were here and we were proud.  Then slowly, his heart rate slowed, until it no longer beat.

When his heart stopped, I could feel that he was gone as I was holding his hand. Doc and I said goodbye for the last time.

I was scared to see someone die for the first time. I was afraid I would be scared and not brave for Rowan.  The truth was that it was bizarre, to see his chest rise and fall so peacefully and for it to stop. I watched him thinking he looked as if any moment he’d breath again. As his end had approached, I realized that Rowan no longer looked like a baby. He looked like a person. He looked wise.  He was beautiful.

My son came naked by night, alone and very hungry; yet he was not afraid.

My son left clothed in his family colors, watched over by his mother and father, not hungry, not hurting; and he was not afraid.

I can feel that he is with others. Our bond feels different now, but I still feel that he can sense me and that I can hear him in my heart.

Rowan’s light is no longer in his body.  It’s held in the thousands of hearts that hold him dear.

And it SHINES

What to Say or Do…

Rowan’s light left his body early this morning at around 12:30. I will be posting about his last day of life and how incredibly “Rowan” it was later.

We are still deciding how to best gather and reflect and celebrate our beautiful gift, but details will be posted here and on Facebook and through mass text once we have any.

In the meantime,

I know that when things this big happen in life, people are often at a loss.  They don’t know what to say or what to do.

Let me first assure you, that if you say the wrong thing, we will just laugh about it later(probably when you aren’t around). We know you are trying to help and have good intentions. You aren’t going to make us hate you. Just talk to us. Tell us the truth and try to avoid clichés if at all possible (though we understand sometimes they just come out).

Bear in mind, we have had the last year to grieve.  We have travelled this road for a while and managed to come to a place of peace that we realize many might not be at yet. We know that many of our friends and family are experiencing emotions we felt very early on.  We understand sadness or difficulty understanding how this happened. However, we may not be the best people to discuss that with right now.

As far as what to do, here are some things we thought we could mention:

DO donate money to the Cystic Fibrosis Foundation, Mighty Oakes Heart Foundation, Mended Little Hearts of Tulsa, or any other organization that supports parents or children like Rowan instead of sending flowers.  (See blog post for link).

DO talk to us about normal things. News, movies, stupid internet videos, etc.

DO invite us out.  We’ve been “in” for a long time. I promise that if we don’t feel like we can handle being “out” we will gratefully decline, but please keep inviting us.

DO talk about Rowan. He was real. We think about him all the time.  We don’t have to avoid him. It is really okay to talk about.

DO smile, laugh, tell jokes, and be yourself around us.

DO give us the grace of forgiveness if we aren’t “ourselves” for a while.  We are rusty at being “normal” but we’ll get back there.

DO keep the texts coming.  Let us know when you are thinking about us. It is nice to know, even if we don’t get a chance to respond.

DO let us know if our story has changed you.  Things like “Because of Rowan, I now…” are wonderful things to share with us.  We love knowing that he reached and changed people. We know how special he is, and love hearing about it. BETTER YET! Write it down! Give us something to read when we miss him to remind us that he lives on in not just our hearts, but in yours as well.

 

And because people are so worried about saying or doing “the wrong thing” here are a few things that we know will not be helpful for us.

DON’T tell us how sorry you are for us.  We aren’t sorry for us. We truly feel joyful that we had a wonderful 7 months with our son. We aren’t sorry that we had our beautiful son in our lives. It’s okay to be sad that he is gone, but not sorry that we had him.  It’s a fine line, but one that for us shows a great deal of respect towards our son.

DON’T talk without listening. Many people have tried to tell us not to be afraid or not to be angry or tried to assure us that their faith is the right one and if we trusted it we’d find peace.  We aren’t afraid. We aren’t angry. We are very much at peace. Many have assumed that we hold the same beliefs they do which is awkward and uncomfortable for us. Make sure that if you are attempting to comfort us, you aren’t truly comforting yourself. And to be honest, the best thing you can do is listen.

DON’T tell us (or others) how we feel or how we must feel. We all experience death differently, so it is much kinder that you ask us and take our lead. Doc is experiencing this differently than I am.  So no one has truly been in our shoes even if they have experienced something similar.

DON’T tell our story as a sad one to others.  Please. We don’t see this as a tragedy. We see this story as a beautiful gift. We see Rowan as beautiful and wonderful and the best thing that has happened to us. That is how we want his story told and remembered.

And then the standard things that you should never tell anyone when a loved one has died:

1.) God has a plan

2.) I know how you feel

3.) You guys need to get out of town for a while OR You guys need to take some time to grieve OR You should go back to work soon OR You should do this OR that.  (However, when we tell you what we plan on doing you may absolutely nod, encourage, pat us on the back, or tell us that you think it’s a wonderful idea…even if you don’t)

We know all of you want to be loving and helpful.  We know what truly amazing support we have.  We just wanted to help all of you know how best to support us.

The Invisible String

Our good friend Becky brought over a gift for Evelyn.  It is a book called “The Invisible String”. 

The book talks about a string that connects people who love each other.  When we think about them it gives a little tug, and when they feel it, they can tug it right back.  It talks about strings that can reach all the way to those who have passed from this world.
So last night, we all sat on the couch.

I tied one string end of a string around Evelyn’s wrist.

And the other around Rowan’s.

And so they were bound by a string.

And we read the story.
At the end of the story I clipped the connecting string, leaving them with a bracelet.  One on Rowan’s wrist, one on Evelyn’s. I told Evelyn that even though the string we could see was gone, the love we have for Rowan won’t ever be gone.  We will always love him and he will always love us.
Shortly after, she got up and took her bracelet off.  (She’s not a giant fan of jewelry).  That’s ok. I kept her bracelet.  It sits in my jewelry box for when she is older, and we read the book again.  I am going to bind the pictures inside the book, along with an envelope for her bracelet.
After the book, Evelyn and Rowan and Doc and I all snuggled in our giant bed. 

She may not understand the string yet….

…but she held her sleeping brother’s hand.

because she does understand love.

All Through the Night

Rowan had a very peaceful night. He woke briefly this morning. He was very hazy and tired, but was clearly happy to see all of us. He has been peacefully sleeping since. It seemed like yesterday evening, he stopped showing any signs of pain or struggling, and is now just resting. We are with him.

We were absolutely touched by all of the pictures of candles.  I have saved them all so that we will remember what a brilliant light Rowan has brought to this world.

At about 11:30 last night, I had this amazing since of comfort, as if Rowan was letting us know that he was at peace now.  We’d all said our goodbyes, and he was ready.

Rowan has a strong little heart.  The hospice nurse yesterday said that she didn’t think he would pass last night (though no guarantee) because his heart was still pretty strong.

We understand that many of you are anxious for news. Rest assured that we will let you know when there is news to share. Please refrain from…well for lack of a better way to put it “is he dead yet?” texts. Also, many of you have posted about Rowan on Facebook, which is sweet and thoughtful and wonderful.  Please correct those who believe him to be dead.  It is very disheartening for us to see so many people talking about him as if he is no more when he is still here. Rowan’s journey will end when he is good and ready. He is running the show.  We’ll let you know when he closes the curtain.

Lighting the Candles

Today, Rowan rapidly begin to shut down. He has not been awake. He is sleeping and peaceful.

Hospice did come see him.  They believe that he will probably pass within the next 24 hours.

We have lit his candle, along with our candles to burn with the warmth and love that we have for our beautiful son.

If you would, light a candle for him. Let him feel the warmth of all those who love him and wish him well on his journey to the next place.

And Fading…

Nursing came out today. Rowan’s color has changed quite a bit. The changes indicated that Rowan is rapidly approaching the point where he will not wake up again.  Once we hit that point, it could be a day or two before he draws his last breath.

We decided to go ahead and stop his IV fluids because he is retaining fluid in his lungs.  This means he is attached to nothing, but still has a port so we can give him meds.

Yesterday I walked him around the house and showed him all of the things we have to remind us of him.  I showed him the wolves. I showed him his candle that we will light on his birthday and anytime we miss him so badly we want to remember the light he brought to us.  I showed him our “strength” sign, with a howling wolf in the background and his shield with his name (thank you Aly). I showed him where I want to hang his handprint and promised him that his quote and wolf pictures will stay in his room along with our diplomas and awards, as he is one of our biggest achievements.  I told him that we were going to make a book for Evelyn with all of their stories in it so she would remember him too.

I told him how much I love him.  How happy I am he picked us, and everything else that I have said to him every day of his life. This morning I took him into the living room and we curled up and slept on the couch.  He laid in bed with his daddy for a while too. 

We can feel that his light is dimming. We are so thankful that we have had so much time to say goodbye.

Spirit Songs

Last night, a group of singers from All Souls came out to our home.  Rowan’s fantastic primary care doctor (and our friend) went to church on Sunday and they talked about music and how it allows us to express some really hard emotions.  She asked if we’d be interested in having a group sing Spirit Songs for Rowan.  We happily arranged it.

So around 6:30, a group of 13 singers came into our living room and filled our home with beautiful harmonies and sounds of peace.  The songs they sang were perfect. Songs of peace. Songs expressing the fact that while we accept and acknowledge that our time with Rowan is almost over for now, that he will be in a place of peace.  Songs that helped us say goodbye, which is what the last few weeks have been.

Rowan slept peacefully through most of it, Evelyn fiddled about fighting her sleepiness, Doc filmed so we could remember this time and share it with Evelyn as she grows older and begins to have questions, and I…I just listened.  Sometimes the songs brought tears. Other times they brought smiles.

We are truly loved and blessed.  The singers filled our house with this sense of profound love and light. It was humbling and fulfilling.

Fading

Rowan is slowly fading.  He is now awake less and less. He is comfortable. It’s nice to know we can guarantee that for him. We are still taking pictures and having special moments, but will probably not post anymore photos.  Rowan has turned rather blue/purple and as amazing as the moments with him are for us, we understand that they may not share the warm fuzzy feeling we have with others and might be too hard to look at.  So I will instead tell you about some of the special things that have happened lately.

Rowan took a few naps laying on my chest, which doesn’t normally happen because he HATED tummy time..and it was just too close to that.

Rowan likes being held, so we do that a lot.  Lots of snuggling.  Lots of kisses.

Rowan smiles at his Dad a lot.  All the time.  He has nothing but smiles for Doc.

Doc played piano for Rowan.  Rowan liked it.

We went on a “camping trip” in the living room.  Rowan slept most of it, but we did go “fishing” on a blue blanket for brown trout and catfish, make shadow puppets, tell scary stories (Evelyn’s favorite was one her Dad told about a road runner who was trying to escape from a scary coyote who ended up falling off a cliff), and eat s’mores.  We also watched the Jungle Book and then used a star projector to light up our ceiling and we sang songs.

And that brings me to last night…

Last night I had a dream.  I dreamt that someone (I’m going to call them Death..but I mean that more in the sense of a guide for Rowan) was sitting in one of our dining room chairs next to Rowan in his room.  They were talking to Rowan about how it was almost time to go.  Rowan was smiling and shaking his head no (which he does all the time). Death (who looked a lot like Alan Rickman as he was in Dogma) told him there were other places he had to go and other people he had to be with, so they  had to go soon.  I woke up feeling a little weirded out by it.  I went in to Rowan’s room…and right by the bed, Doc had put one of our dining room chairs.  Exactly where it was in my dream. At first I was pretty freaked out, but after relaxing a little, I realized that I felt comforted.  Rowan isn’t alone. In my mind there is someone with him, helping him get ready to leave our world. It’s a nice thought.

Playing Together

Today was fun.

That’s right.  Fun.

Today we played like a normal family.  Evelyn decided she wanted to go “to the Aquarium” but we couldn’t all go, so I told her I’d make her a car so we could drive there.

 

And then when Rowan woke up we decided he should come with us in our car for the ride.  We follow AAP (American Academy of Pediatrics) guidelines very closely, so Rowan had to sit rear facing in his “car seat”.

Evelyn took very good care of all passengers and made sure they were buckled.  Rowan had so much fun listening to her talk and play, despite being slightly concerned by her crazy driving.

 

 

Then after all of that crazy time in the car, we decided to curl up and watch a movie.  Rowan was very excited about the Lion King.  Evelyn explained the movie to him and told him “Don’t worry Rowan, it will be okay” during all the scary parts. 

It was just a fun and beautiful day.

MLH Make a Wish

MLH (Mended Little Hearts) is a wonderful support group for families with children who have CHD.  They have been a fantastic source of strength and comfort for us through out our journey with Rowan and provided a place where we felt “normal” and understood.

A few weeks ago, the monthly meeting was fantastic.  We met with people from the Make A Wish Foundation to talk about supporting wishes and getting wishes granted for CHD kids.  Make A Wish grants wishes to children 2.5 years to 18 years of age.  So, of course Rowan isn’t old enough for one. 

So the ladies from our Tulsa chapter decided to grant a wish for Rowan on their own.  They called and asked me what we wanted to do.

At first we really struggled to come up with anything.  Rowan sleeps so much that trying to plan something to “do” wasn’t a good idea.  So I thought back to that meeting.

Make a Wish grants 4 types of wishes:

I wish to be…

I wish to go…

I wish to meet…

I wish to have…

And I realized that what I wanted to have was something concrete to remind Evelyn that she and Rowan liked each other and did things together.

And suddenly, I had an idea! My sister-in-law had thrown a Piggies and Paws party a few years ago when I was a first year teacher and we were WAY too poor to do anything like that.  What Piggies and Paws does is take hand/footprints and turn them into art! 

I thought it would be incredible if we could get artwork made out of Rowan and Evelyn’s prints and then take pictures of them doing it together.  This way we could show Evelyn pictures of them doing it together and then always have the art to hang in our house.

I texted the MLH chapter leader and told her my idea, promising to think of a back up just in case…

and she responded with “No need! We have someone that can come tonight or tomorrow!” Raylea, an artist in Tulsa, heard our story and their request and came out the same day to make our wish for Rowan and Evelyn come true.

To say I was humbled and touched is to scratch the surface.  Here are pictures of us doing prints.  We decided to do a fairy tale theme:

Rowan’s hand turned into a knight

Evelyn’s foot turned into a dragon (she picked it)

My hand turned into a forest

Doc’s hand turned into a castle

And then we also did handprints of Doc and Rowan overlapping and a foot print of Rowan’s to turn into a plane.

We are so happy to have these special moments together and to have these beautiful pieces that will hang in our home.  The finished products will arrive in a few weeks and will serve as a fantastic reminder of the beautiful days we are sharing with Rowan.  Thank you to MLH, and to Amy for the pictures! (And for being there along with Meredith to share the evening with us)

Amy does photographs for families with children who have special needs.  You can view her photography at: HM Photography by Amy Schroeder

July 18th

Last night was hard.  So hard.

I will happily admit that I have a wall up right now.  I am sad.  Terribly sad, BUT Rowan is still here.  I refuse to weep all the time when he is still here.  I can still hold him. Talk to him. Sing to him. Play with him. See him smile. Put socks on his feet when they are cold. I can still do those things.  Mentally and emotionally I feel very well balanced.  I am accepting of what is happening and embracing my role as his loving mother.  I want to ease his passing, this giant transition from our world to whatever is afterward.  How can I love and comfort him if I’m sobbing all the time?

So I refuse to sit and think about how hard this will all be afterwards..because we aren’t there yet. And I can do that…most of the time.

Last night, it was bed time and Evelyn started SOBBING.  She was super upset, and couldn’t calm down.  She kept saying “Mom, I’m not okay” and then would say something like “Can I have a drink of water? That would make me better.” So we went and got a drink of water from the kitchen and she started kept crying.  She was so upset and seemed so confused that she didn’t feel better. It was like she couldn’t understand why nothing made her okay.  Why couldn’t she calm down?  Finally she sat down in her bed and said “Mom, I don’t want baby Rowan to die. We need to go to the hospital.  They’ll make him better.” So I of course started sobbing.

“Evelyn, I want Rowan to get better too. I don’t want him to die. But his heart is broken and we can’t fix it.  The doctors tried.  That’s why he went to the hospital so much. But he is home so we can love him and spend time with him. It’s okay for you to be sad Evelyn. It’s okay to cry. It’s okay to want him to get better.”

She cried for a long time and then slowly settled down. I sang to her for a while, sounding choked and letting little whimpers escape periodically.

Once she finally went to sleep, safe in her bed, I went to mine and starting sobbing. I don’t want my son to die. Every fiber in my being wanted to go hook a feeding pump up and tell Rowan that he had to get better because I couldn’t do this. I can’t say goodbye. I’m not ready.  How will I go the rest of my life knowing there is this giant hole next to Evelyn that is unfilled? How will I ever look at family pictures, or stockings hung on our fireplace, or at a table setting and not think “there should be 4”? How?

So I cried. A lot.

And then I put myself together, went into Rowan’s room, sat down in our rocking chair – just the two of us (until our dog laid next to him on my lap) and we rocked. I sang him his lullaby I made up a while ago and he smiled and then fell asleep.  Every time I would start singing, he’d smile in his sleep.  We just cuddled for a few hours, with me crying periodically and my tears landing warmly on the soft blankets we wrap him in. I kissed him and just spent time truly enjoying him.

I talked to him about how I felt. I told him that we were listening to him. That I wanted him, and no one else. How proud I am…how whatever is after, there will be peace. No pain. And friends. Oakes. Grandma. Grandpa. And one day I will come find him.

And then I went to bed.  I woke up this morning to Evelyn going

“Hi Rowan! You are awake!”

Rowan, “AHHHH”.

Evelyn: What?

Rowan: Ahba

Evelyn: Rowan, I don’t understand you.

Rowan: Ahba

Evelyn: WHAT? Do you want to play with your toys? Here you go!

Rowan: AHHHH

Evelyn: There you go! You like your toys?

New day. New battle. Rowan has been awake and playful for a few hours.  Sleeping more. Still here. Still loving us. Still beautiful.

How do you tell a 2 year old that her brother is going to die?

Straight and simply, you just say it. We have a script we try to repeat (repetition is the key to learning).

Rowan is dying.  His heart is broken. The doctors tried to fix it and we tried to help him get better but we cannot fix him.  Rowan likes us.  He likes you.  He wants to smile and play with us so he is at home now. We want to spend time with Rowan before he dies.

We talk about how we won’t go to the hospital anymore.  “Rowan is all done at the hospital”.  We talk about how Rowan doesn’t hurt.  Rowan feels ok.  We give him medicine to make sure.

When Rowan is dead, he won’t be able to smile or play. He won’t breath.  We won’t hear his heartbeat anymore.  Rowan will be gone.

She has shown understanding by repeating and varifying what we say.

She also is regressing some.  She has started trying to put everything in her mouth and chew on her fingers.  We offered her a baby teether and insist that if she wants to put something in her mouth, it must be that.  This keeps her from mutilating her hands or getting sores.

She also is afraid of sleeping in her bed.  At bedtime, she gets in bed with us and we watch variety TV (So You Think You Can Dance or Americas Got Talent) for about 20 minutes and then she will normally ask to go to her bed.  She likes her bed better so she actually prefers to sleep there, she just needs to feel safe first.

The hardest thing to cope with is that she wants to be held a lot more and she screams.  Loud. Frequently.

She starts screaming whenever she is upset.  If we calmly say “I can tell you are upset and I want to help you. Can you talk to me and tell me what is wrong?” and she normally responds well to that.  When she stops…we send her to Grandma’s house.

We are treating Evelyn like a person.  We talk honestly to her about what is going on and don’t hide our feelings or emotions from her.  She is sad too, she just isn’t entirely sure why.  We play games with her and try to spend time together too.

We have nursing coming in now to do periodic shifts so we can clean or nap or do laundry or sleep.  It helps.  Rowan gets morphine whenever he needs it.

We had to turn Rowan’s IV fluids down today because he had started getting puffier again.  He is now tolerating less than 10 ounces a day of fluid without it causing him to swell. 

This is happening to us and to Rowan and to Evelyn and we make sure we include her in this process.  We answer her questions. We talk to her about how he is doing.

We also have started to clean out some things.  For example, Rowan’s “oral therapy” tools we used to try to get him to take a bottle or food…Rowan doesn’t need them anymore.  We talk about how Rowan isn’t hungry and doesn’t need these things, so we can get rid of them.  We hope that by starting this now, when Rowan has died, we can clean out his things and tell her that he no longer needs them without her being as concerned by it.

We also tell her how much we love her.  Often. Because she is amazing.  She is a wonderful big sister.

July 16th

Yesterday we spent waiting to figure out hospice arrangements.  Basically we had a big fiasco in trying to figure out enrollment and decided to take him home today instead.

Rowan was definitely starting to sleep more and feel a little more crummy.  We asked to make his morphine more frequent.

I freaked out yesterday.  I called the hospice nurse (and I think all hospice nurses must be angels) sobbing because I kept thinking “but what if he can get better?” We knew he wasn’t hungry, but it was so hard for me to see him getting fussy and upset and not suddenly say “DO EVERYTHING!” because this is so overwhelmingly sad.  I have started crying more.  Just because I am

1) So very very heartbroken and sad that this is Rowan’s fate.

2) So very very thankful and joyful that his ending is so magical.  The day after we decided to go the hospice route, Rowan started crashing, and became this beautiful happy son we wanted so desperately to spend time with.  And we did.  For three whole days he played and cooed and laughed and smiled.  And now he is sleepy.  Who could ask for anything more peaceful and dignified? I cry tears of thankfulness frequently.

Today we were trying to get him discharged. Our hospitalist (different one now as they had a shift change) stopped in to tell us that he was going to make phone calls to get things moving and that he was also going to act as our advocate to “The Sisters” regarding our decision not to use TPN.

I still felt sick that this decision was being so hotly contested.  All I want…all I have ever wanted, is what is best for Rowan. Every decision we have ever made has come from our hearts and been full of love.  And none of them were easy.

I left the hospital for a while to get drinks for us.  Doc called to tell me that the hospitalist came by.  He’d explained our situation to the sisters.  After hearing Rowan’s situation, story, and our reasons for believing TPN would hurt more than help, they not only agreed with our decision, but said to tell us they were proud of the way we have lovingly cared for our son.  If I ever see a nun again I am going to hug them for a borderline inappropriate amount of time and thank them for being a pillar of the teachings of Jesus and showing compassion and love towards our son.

We brought Evelyn up to the hospital for Rowan’s last discharge.  I took her to all her favorite places.  She played in the tunnel in the lobby, looked at the giant flowers outside the window, and got a sticker from security.  She helped us carry all of Rowan’s toys and clothing out.

And then,

as we left,

we said goodbye.  “Good bye Rowan’s Room.” “Good bye nurses.” “Good bye flowers.” “Good bye golden flower on the door” “Good bye elevator”…

And then Rowan stopped making noise.  Doc stopped pushing the stroller and he, the nurse, and I all stared.  Then Rowan started to move and we all let out a sigh of relief.  Doc laughed and said “Well, that would have been really fast.” Then I looked at the nurse and said “What a horrible end to your shift right?” And we had a good natured laugh about the fact that we all for a moment thought Rowan had died.

As we left the hospital, we all yelled, ”Good bye hospital.”

On the drive home I told Evelyn “Rowan will not be in the hospital again.  We won’t go see him there anymore.  Rowan is coming home.  When Rowan dies, we won’t see him anymore, but he won’t be at the hospital. He will be dead.”

Evelyn responded “I know Mom. Rowan is dying, but he’s not dead yet.”

“Exactly.  Let’s go home.”

So home we are.  Rowan is sleeping peacefully in his own bed.  We are watching Robin Hood Men in Tights. 

Tomorrow the hospice nurse and our beautiful home health nurse (who visited Rowan in the hospital several times and has offered to be here as our friend if we need her) will come by.  We will have nurses here at night to take care of Rowan so we can sleep.  We will love him in his last days.

“He came naked, by night, alone and very hungry; yet he was not afraid.”

That quote has stuck with us for all of Rowan’s life.  Doc told me today, “As Rowan leaves us, he won’t be naked, he won’t be alone, and he won’t be hungry…and he is still not afraid.”

July 15th

Yesterday was the hardest day I can think of that we have been through. 

We had decided we did not want to put Rowan through a prolonged period of discomfort by starting TPN.  We decided that if Rowan wasn’t hungry, giving him IV food wasn’t fixing a discomfort for him, so we weren’t going to force it on him.

This was something that was a giant ethical issue for our pulmonologist and our hospitalist.  The pulmonologist (whom we love and feel has fought for Rowan every step of the way) wasn’t comfortable with our decision.

This triggered a realization that our hospitalist was also not okay with it AND the realization that it was against hospital policy to not give TPN and IV fluids, regardless of patient or parent refusal. 

After being extremely distressed and upset by this thought system, we decided to find out our options.

Option 1: Do TPN

Option 2: Go home. Let Rowan die here, in his room, with family.  Evelyn may be exposed to it.  We will forever walk by some room in our home and know that Rowan ended his life there.

Option 3: Clarehouse, a hospice facility that takes children.  At Clarehouse, Rowan would not be allowed to have an IV or get anything through his G-tube…so no meds except for ones given rectally or through a patch.

We almost immediately eliminated option 3.  We didn’t want to stop Rowan’s meds and IVs yet because as of right now, he’s still pretty playful.

Option 1? Well, to be honest, we considered it.  We felt like we were crazy after the incredibly charged accusation that came along with our decision not to force feed our son who wasn’t hungry.  We talked and talked about this.  In the end, we decided that if we started TPN we would be doing something TO Rowan, and not FOR Rowan.  We would not be meeting our goal of keeping his quality of life the best it could be, because it risked prolonging the unpleasant part of the end of his life.

So we decided on Option 2.  Rowan is coming home Monday on hospice.  We will guide Evelyn and Rowan through this time.  We will do what is best for our son.

So today we spent time with Rowan, who is starting to become more uncomfortable.  I took Evelyn to a movie for some mother daughter time (Sunday is our day).

We talked to child life.  We told Evelyn that Rowan is dying.  We cried a lot…because Rowan is approaching the end far quicker than we thought he would when we decided to go the hospice route.

I understand that from an angle of thinking, not giving TPN is “starving” a child.  Rowan may die, partially because of a lack of nutrition…but he wasn’t hungry.  His digestive system was shutting down…shut down in fact. TPN wasn’t going to fix him.  To get enough calories in Rowan through TPN would be enough fluid that it would make him too puffy.  Same with feeds.  IV nutrition wouldn’t fix him, and it would likely make him more uncomfortable. Why would you force feed someone who wasn’t hungry…especially if they weren’t hungry because they were dying?

I don’t get it.

But we are doing what is best for Rowan. We are listening to him.  We are meeting his needs.  That is what we can do for him.

July 13th

Yesterday was a big day for me in understanding Rowan’s body.  The question came up “do we start TPN”? TPN is an IV nutrition.  Rowan would receive all of his foods through an IV.  I had seen on an adult DNR and living will form a box that said “do not give me IV nutrition”.  That made me think this was something I wanted to ask hospice about before we started it.

Rowan wasn’t tolerating any food.  He hadn’t eaten and kept food down in almost 24 hours and…he was HAPPY!

Yesterday morning I walked in to a smiling, playing, kicking, toy loving, kiddo.  It was honestly the first time I’ve played with Rowan for a long period of time and he didn’t look like he hurt.  He also wasn’t sucking on his hands, demanding his pacifier, or doing any other “I’m hungry” signs.  He was happy all day.  I mean ALL day.  He took a nap, but when he wasn’t asleep did nothing but smile!  They even tried to put in a PICC line (special IV) to do lab draws through.  They tried several places to get one and Rowan didn’t even get upset.  He lay there listening to music and just relaxed.  Rowan was SATing higher, coughing a little less, looked like he was circulating blood better, and looked less blue.

So I called the hospice nurse I spoke with.  With so much looking better (including his kidneys) it seemed weird that he wasn’t hungry, but was happy.  When I talked to her she talked to me about system failure.  How the digestive system starts to shut down and releases chemicals that make it so people who are dying are not hungry or thirsty.  Rowan no longer is trying to force food down a digestive system that is uncomfortable and he isn’t hungry, and he’s happier.  She said that with system shut down, the body releases chemicals that cause it to stop absorbing nutrition correctly and that TPN wouldn’t necessarily help him.  We were also concerned that if we started TPN…we would have to stop it at some point.  That is much harder to do than to say “please don’t”. 

So she posed another option…if he acts hungry…feed him.  What a novel idea, right?  So that’s what we decided.  If he’s not hungry, don’t feed him.  If he starts to show any signs of hunger…by all means, let’s try it again.

Today, Rowan was even happier.  He played with my nose, pulled my hair, and was SATing higher.  He looks great.  He hasn’t absorbed food in two days.  He played all day.  He smiled.  He flirted.  He cuddled.

Child life came and did an impression of his little hand.  Then later they did hand prints of Evelyn and Rowan side by side on cardstock.  We will forever treasure those little hands together.

Meanwhile…Evelyn noticed the picture of a sun on Rowan’s door, that is also through out the floor.  She called it a golden flower…despite my insisting that it is a sun. (remember this detail, it comes in handy later).

After the handprints, Evelyn went home for a nap and I stayed with Rowan. 

Rowan’s pulmonologist came back and seemed very surprised at how much better Rowan looked.  …and then he asked if anyone had talked about doing a J tube for Rowan’s feeds.  A J tube means the button in his stomach would have a tube inside it that went into Rowan’s digestive system past the stomach.  It means he would be constantly hooked up to the feeding tube, and it would likely mean another Nissen for Rowan as well (so he can’t throw up).  This was something Matt and I dismissed really because we aren’t interested in more interventions.

Then the hospice doctor came by.  Talking with him made me feel even better about understanding Rowan.  We are finally listening to him. He isn’t hungry.  ANY parent knows that a 7 month old who hasn’t eaten in nearly 3 days should be inconsolable.  That isn’t him.  He isn’t acting hungry and he’s happy.  We are going to enjoy it and we will not touch him.

…so after talking with hospice and feeling like we truly understand Rowan and what he is going through, we feel like this is truly the right choice for our son.  Especially since the “solution” to his eating is either TPN which we don’t want or a J tube which we don’t want.  We are ready to give our son the dignified and peaceful death he is showing us he is ready for.  This “happy Rowan” is a gift.  We understand it as such, and not a sudden turn around.

So Doc calls the physician taking care of him in the hospital to fill him in on what was said by hospice…and the physician tells him that our pulmonologist has (get this) requested a meeting with all of Rowan’s specialists.  ARE YOU KIDDING ME!?!?!?!?!? We BEGGED for that meeting for the last few weeks.  Do you feel like hospice is a bad choice now? Because that seems like a TODAY conversation, not a MONDAY conversation!!!! 

To say I feel sick to my stomach is an understatement.  We have grieved over this decision to change Rowan to comfort care for MONTHS!  This wasn’t decided easily.  This was decided after 7 months of putting on a brave and loving suit of armor ever day to fight through all of the suffering Rowan endures on a daily basis.  It comes after watching 7 months of a dwindling quality of life. It comes after meeting with child therapists, and talking to many doctors, and more “all nighters” than med school or college combined FIGHTING for Rowan.  I have always fought for what was best for him.  My gut has been right.  AND NOW…Now that he isn’t receiving full nutrition and we’ve discussed end care…now we’re having a meeting??  I have this terrifying idea of Rowan being ready to let go..and them some ethics group coming in and telling us that we have to do something to Rowan that lowers his quality of life but makes him suffer and us watch it for even longer.  Doc told the physician we were concerned about this request for a meeting and asked if there was a thought that hospice should be reconsidered.  The physician asked that we discuss it tomorrow.

SO I will not be sleeping.

At all. 

I’m going to sit here and cry and sob because I have fought so hard for Rowan…and I never imagined that I would have to fight to give him a death that wasn’t as horrific as parts of his life have been or worse.

So we went home.

I put Evelyn in bed, and tried to go through our routine.  We laid down. I covered her up.  I read her “I Am a Bunny” and sang her a song.  During her lullaby I started crying.  The following happened (remember the golden flower on his door?):

Evelyn: Mom, why are you sad?

Mom: I’m sad because Rowan is sick.  I miss Rowan.  I wish he wasn’t so very sick.

Evelyn: Mom, it’s okay.  Rowan is going to be okay.  I will sign him a song. He has a golden flower.

AND CUE ME LOSING IT!

Let me back up.

Since Monday, Evelyn has been dressing up as Rapunzel from Tangled.  She asks to see the movie over and over again.  She always wants to be a “princess” and wear her Rapunzel dress.

Tangled has a golden flower in it…and when you sing, it heals people who are sick.

If only there was a golden flower.  If only I could sing to Rowan and he would be better…if only I could do that for you Evelyn.

If only fairy tales were real.

But they aren’t.

What is real is that my son has been happy and playful and loving for the last two days.  When that changes, we will adjust treatment.  What is real is the fight that we survive daily to do what is best for Rowan, the fight that has seen many battles.  And we will win the war.

What is real is the incredible love that binds our family together.  The love that already has saved Rowan…it saved him from a meaningless life of suffering.  He has had a beautiful life, despite the suffering…because of the love we have for him and one another. 

That is his fairy tale.  It starts with love.  It ends with love. And the love he’s taught us will live on. Golden flower or no. 

July 11th

Today Rowan’s BUN rose to 17 and his Creatin rose to .66.  His kidneys are continuing to show signs of failure.  He is also having trouble with constipation and is no longer tolerating food.  He throws everything back up.  They started him on IV fluids today to compensate some for the lack of food he is getting.

This evening they took his blood pressure.  We want Rowan at 90/60ish.  Rowan’s legs were 40/15 and his arms were 70/20.  That’s too low.  The thought is that the medicine he gets to make him less puffy, coupled with losing fluids by throwing up has significantly dehydrated him.  They are turning up his fluids and we will wait to see if that works.

From a non-medical standpoint, Rowan seemed very calm most of today.  He was upset when he threw up or gagged.  He did have some time this afternoon where he smiled and played and was very responsive while I talked to him.  I love those moments where I see him and for ten minutes, we are fine.  Nothing is wrong.  We’re just happy to see each other.

Evelyn spent some time with him at the hospital.  She asked me to go see him this morning.  After she started getting a bit antsy in the hospital room, we went to a nearby park.  While she was up on a jungle gym, she looked down and suddenly got very scared.  She froze and started crying and screaming for help.  When I picked her up and got her down, she told me she wanted to go back and see Rowan again.  So we did.

Early afternoon, Evelyn and I had a girl date.  We went to buy some dresses.  The last few days she LOVES dressing up and asks to be called “Princess Evelyn” so we went to the “Princess Store” (aka Disney Store) and picked up some dazzling shoes and pajamas.

We are hesitant this evening since Rowan’s blood pressures have been so low.  Whether or not these things turn around is a big indicator in what our time left looks like.

We decided to take a break from the hospital for sanity’s sake and went home to spend time with Evelyn.  When we got home, our house was spotless (including Evelyn’s nightmare of a room), our laundry was done and folded, dinner was in our refrigerator, and breakfast for several days was dropped off.  Thank you so much to my amazing friends at JWI. 

You have no idea how much your presence and aid means to us.  It’s wonderful to get to be Rowan and Evelyn’s parents right now.  To just rest at home so we can handle the emotional pounding the next day will bring.  It truly made a giant difference in our day.

No Long Term Solution

Doc and I have known for the last few weeks that we were rapidly approaching a dead end.  Rowan isn’t showing any signs of improving and is instead slowly getting worse. 

Yesterday we noticed his discomfort level was much higher.  He had turned much bluer and puffier and was working harder to breathe.  Despite how heart wrenching it was for us to take him to the hospital, we knew that at this point he needed to be taken in.

We were grateful that Rowan’s primary care doctor was able to get him a bed so we didn’t have to go through the ER.

Rowan is now at St. Francis, receiving treatment for some of the symptoms that he has that are contributing to his discomfort.

After meeting with the pulmonologist today, we feel like this is very likely a lung issue.  Rowan has been on a ventilator for a long time in his short life and that can cause lung damage.  That is likely a sizable part of the problem. With all of the procedures he’s had, his lungs have likely sustained some CF damage.  On top of that, there was a cath Rowan had in March that showed some varying pressures in his pulmonary vessels meaning he might have some narrowing that is causing that too.  There isn’t really a fix for these things.  Several months (like 6-9 months) with no ventilation and good health might help his lungs recover, but that is not likely a possibility for him.

We are trying some antibiotics right now just in case there is a lung infection.  We should see some improvement over the next few days if they are working.  We will re-evaluate at the end of the week.

We are going to talk to the palliative care team at St. Francis tomorrow to decide what end of life care looks like for Rowan so we can set up hospice should he need it.

Every time he smiles I start to tear up.  I am so proud of him.

Rowan is Home Again

Let me precede this post with a plea.  Do not mistake my frustration for anger.  I may sound angry.  Not the case.  There is no one to be angry at.  Everyone has done a great job of helping Rowan in whatever capacity they can. There is nothing to be angry at.  But I am frustrated.

Ok, so Rowan went to the ER on Saturday.  His oxygen saturation levels were sitting in the low sixties and high fifties for nearly two hours which was not ok.  He was also acting very uncomfortable.

He went to the hospital and was admitted.  While there, he was SATing at a better level, but still dropping into the low sixties every now and then.  He also became sleepier and was acting like he was in pain. Bad.

So they did a heart cath to see what was up.  Rowan’s aortic arch had narrowed a bit and needed ballooning.  Yay! A fixable problem!  Wahoo!  Rowan’s pressures looked fine overall.  No worries from what his heart looks like.

Rowan comes back from Cath smiling and seeming like he feels pretty good.  He continues to drop into the sixties. 

They turn his oxygen up.  He is still dropping but maybe not as often.

They send him home.

WHAT?!? So he had a cath where they fixed something to make him better and he needs MORE oxygen?? ARRRGGGHHHH!!!!!!!!

But here is the issue.  His heart looks fine.  Function is good.  There is not an answer for why he is dropping off like that.  His lung pressures were fine during the cath.  He has no reason to be having lung trouble.  So no answers.  He had a CT done, no visible problems.

So we have nothing to treat.  We have no “cause” of the problem.  So cardiology says he is fine from a heart standpoint and can go home.  Pulmonology doesn’t see anything wrong to address.

So they have no reason to keep him in the hospital.

Ok. So Rowan is home now.  He likes home.  He’s smiling.  Wahoo.  But we don’t know why he is doing this.

The hope would be that it will just go away and he will slowly climb up to higher SATs and we can get him off the oxygen.  The HOPE.

The reality is that this has not been what Rowan does.  Rowan doesn’t really get “better” and if he does it is very short lived.  So if we don’t have anything to do to help him, there isn’t a reason to keep him at the hospital when he can be at home and happier. 

So we’ll wait.  We’ll keep him here as long as we can. 

AND NOW

something fun!

Rowan had his first bath today! In the sink…because he smelled really bad when he was discharged.

He didn’t hate it. 

Success.

Post Glenn Heart

So Rowan’s heart works very differently now that he is “Post Glenn”.  I’m going to attempt to explain how this works.  At the top of the picture, you can see where blue blood (unoxygenated blood) is returning from the upper body.  It goes straight to the lungs to be oxygenated.  Then it travels from the lungs (the red blood you see) into the heart.  Blue blood (unoxygenated blood from the lower body) comes into the heart as well.  Here the blue blood from the lower body mixes with the red blood that has been oxygenated from the upper body to make “purple” blood.  That purple blood is then pumped out of the heart to the rest of the body.

The final stage of a repair like this is called the Fontan.  In that surgery, the blue blood from the lower body will also go directly to the lungs.  The heart will only have oxygenated red blood in it and it will pump that to the rest of the body.  It could be a few years before the Fontan comes up for Rowan.  In the meantime, he will look a little dusky/blue still because his body is circulating purple blood.

Raising Money for the Cystic Fibrosis Foundation

 

SO many of you have asked to know if there is anything you can do for us.  Whether you live here or there – whether you know us well or not – here is something you can do.  I know people are signing up for 8 million different 5ks to raise money for good causes, but this is one that I am asking all of you who have been moved by our story to take up as a personal one. 

Cystic Fibrosis is Rowan’s archenemy.  Think of his heart defects as the bad guy in the first movie and once he beats it, you find out about the evil emperor.  CF is that evil emperor.  Like Palpatine.

The good news is that the Cystic Fibrosis Foundation has been funding revolutionary research.  Gene therapies, drugs, treatments that prolong the life expectancy of children with CF and may eventually erase CF as a threat.  They are the rebel forces, and they need your help to get enough resources and ships to take out the Death Star.

Star Wars references aside, CF research is something we are very passionate about aiding.  The Pubcrawl in August is our first event with the CFF and we want to make a bang.  You can help.  Please read the letter below, and if you can, add something to our cause.  I don’t care if it’s $5.  I don’t care if it’s $1.  It all truly helps.

Thank you.

http://www.cff.org/LWC/ElleFowler

When?

Rowan is still dropping lower than we’d like in SATs.  He is breathing a little harder.  He is coughing.  He seems uncomfortable and like he feels bad.  His face is a little puffy.  And Doc and I are getting what smiles we can, but at the same time, wondering, “When is he going to get better?”  When?

If he’d had a virus, it should be better.  We haven’t gone anywhere, so we don’t know how he would have picked up any other ones.  His virus screens have all come back negative.

So – he is still needing oxygen and he is still dropping his saturations.

We feel like through out Rowan’s life this is what we’ve seen.

Day 1 – he crashes and they think his ductus is closing – echo shows that didn’t happen.  No true explanation.  They wait for his Norwood.

Norwood happens.  Rowan takes 2 months to get extubated.  Rowan develops tons of chest fluid, no one knows why.  It eventually goes away.

Rowan is extubated.  Rowan gets off oxygen.  Two weeks later he starts having trouble dropping.  He eventually is put on oxygen.

A cath reveals that he has pulmonary hypertension. 

It is treated.  He gets slightly better.

Rowan starts having serious withdrawal issues that put him in to shock.

Rowan gets off the oxygen for about a week and crashes.

Suspected virus, no confirmation.  Cath reveals slightly improved pressures.  Glenn is scheduled.

Rowan continues to SAT everywhere.  He is unstable, needs varying oxygen levels.  There isn’t a clear explanation for his problems.

Rowan has his Glenn and a hole in his heart is cleaned out that is thought to explain his volatility over the last few weeks.  Rowan gets off the oxygen for two days and then suddenly drops SATs into the 60s, requiring oxygen.

Rowan continues to drop lower and lower, even with oxygen.

So at this point. I am stopping to look at the entire story.  With so much that has been unexplained through out Rowan’s medical life, I feel like we are missing something.  I feel like there is a piece that we haven’t found yet.

So what has happened with him now doesn’t make sense to us.  We are going to ask for a few tests.  We are going to ask for some imaging as well as consider the possibility of doing another Cath on Rowan to see if there have been any changes in the last two months.  We know that the hole tried to close so maybe something else happened too.

If we look at all these things and we cannot find something that clearly explains these declines, then we will be asking for a conference with all of Rowan’s care team.  If Rowan is declining, but there is no solution to it, then I don’t want to ask Rowan to fight a ghost.

We are also now working on trying to get some assistance to help us cover a nurse in our home when Rowan is next able to come home.  We want to be able to be Rowan’s family more and his caregivers a little less.  I wish I could, but I have to admit that while I could handle Rowan’s care when it was temporary, looking at the long term, I cannot do all of the therapy, medications, oxygen regulation, and monitoring that it takes to care for Rowan 24/7. 

Evelyn is still really struggling with Rowan being gone and our time split between being with her and being with him.  Today we took her to see Rowan and she wanted to sit in “the cage” with Rowan.  I think she is actually scared.  We are trying to keep it together as much as we can around her, but I cannot protect her from this.  I can only model how to be strong but not lose you warmth and kindness in the process and hope that she learns to cope, as unfair as it is for a 2-year-old to have to.

We live with confidence that we have absolutely given Rowan the best we possibly can everyday.  We play.  We smile.  We live in a way that we do not regret.  He has taught us how to do that.  We trust the choices we have made and we will continue to make them - together.