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.