August

This week has been interesting.

Last week we went on our first family vacation. Jason, Amelia, and I jumped in the car and drove out to Bayfield, Wisconsin. We were there for our friends' wedding - it was gorgeous, by the way! - and we decided to take a few days to ourselves. We spent Tuesday in Duluth, then Wednesday through Sunday in Bayfield.. and then another afternoon in Duluth. We saw trains, planes, boats. We picked raspberries and blueberries, and did a few wine tastings. We went on a shipwreck tour. We were busy! Amelia had a blast, and Jason and I were happy to be able to sit on the deck of our rented condo and just watch the waves of Lake Superior.

It was hard to come home. I wouldn't mind moving to Duluth. We could open our game store, enroll Amelia in a safer school. We would be establishing our family in another area. Pioneers. But we'd still be close enough to visit family. It's beautiful - the air is fresh and laced with the clean smell of the massive lake. Lying in our hotel room on that first night, I felt my core physically relax. I hadn't realized how much stress and pain I had been carrying around in the Cities. I'm trying to let that go - but being back for less than a week and I've noticed it returning. It's the feeling of the world crushing down, my shoulders keep on sagging and my posture keeps on slipping. It's physically painful to be back. I just want to be quiet and try to keep myself going.

It's the quiet that helps me strengthen myself. I either have to be constantly going, or quietly breathing. If I'm not physically moving, I'd rather be quiet.

I felt guilty leaving Henry's ashes at our house - does anyone else feel this? He should have been with us for our first family vacation. I had dreamed that he would be there - because we just didn't know how long he'd be with us. Before February, before we found out, I had been scoping out little tuxes for him to wear. Because I knew it was a boy. It was an absolutely beautiful time - surreal, even - but would have been perfect if my son were able to be there. It's just something I've dreamt of a lot. [Congratulations to the New York Fingletons, btw!]


Amelia's birthday was wonderful. I have a two year old. We went to Chuck E. Cheese - more for mommy and daddy than for her. She loved the toddler area with the slide, and just being with her family. Mommy loves Skeeball, and Daddy rocked the Price is Right ticket machine -- he made it to the bonus round! We both failed miserable at the Deal or No Deal game.

Many of you know that my sister is pregnant. Strike that, was. She now has a beautiful little girl. Scarlett Jane. Scarlett and Amelia are birthday cousins, too! 8/7 and 8/8 - forever linked in birthday parties. Except for next year - I demand that Scarlett have her own first birthday party!

It's funny, because Jenny and I are six days apart. Our daughters are even closer. I really hope that it's an indicator to how close they're going to be. Marina's all ready a fantastic big sister - but I think big brother Ronan is still getting used to the idea.

See? I'm crying again. I'm so happy - Scarlett is just a beautiful girl! And she has a fantastic family to grow with.

I've been worried about how I was going to handle Jenny's labor. I was terrified that it would take place in the same room that I was in for those four days. The room where Henry died. The room I'm looking at every day at work - my view at my desk is a straight line into that particular room. It's hard.

I don't know if I've completely reconciled working at the hospital with the place where we went through so much. I don't know if I can.

You see, I love my job. I love my coworkers. I love my hours. I love my company. There's not much I can say against it. The only thing is the location. I'm constantly barraged with reminders of that time. It's not good. But it's not bad. It's just.. hard. Really, really hard. I've been contacted by another company about a position in my former career (police support). It'd be different hours -- nights -- but it's a rather large increase in pay. And it's closer to my home. And I wouldn't have to be yelled at by angry women on some days.

But.. I love where I'm at now. Am I harming myself by not looking into this?

Panic

I had a moment of panic today as I considered the future. 

So I took to the internet to soothe my fears/incite them into overdrive.

"Although the possibility exists that the condition could be genetic, in general, studies have shown that if no diagnosis is made and a child has a non-chromosomal condition, recurrence risks are 3-5%. This means that there is a 95-97% chance that it will not affect future children. In the vast majority of cases when clear recurrence risks can be given, the chances of a birth defect or genetic condition not happening again are far greater than the risk of recurrence. However, we must be mindful of the meaning of numbers to people who have already been affected by the devastation of learning of a genetic condition in a baby or unborn child. As is stated by the author of Another Letter to a Genetic Counselor, the idea of a few percent just wasn’t meaningful."

                   Assessing Genetic Recurrence Risks, Helga V. Toriello, Ph.D

Sigh of relief.

But then again, we just don't know. We'll never know. So I go back to researching HPE and possible environmental factors to contribute. And then I panic again.

What if it wasn't a fluke? What if I took asprin, and that caused my boy to die? What if it was something I did?

See? Panic. Anxiety. Fear. Terror.

Happy Monday. F. 

Slipping

I keep slipping on my journey.

Last night, I caught myself wishing for something good to finally happen to our family. Then I burst into tears. I'm finally able to look at photographs of my son -- really look -- and he's so beautiful. I can look at his face and appreciate how gorgeous he was.

How can I say he wasn't good? How could I have even thought that in a simple passing moment? His life has forever changed mine; and although I mourn and miss him every second of the day.. I still was able to love him, and hold him. It's still okay.

I'm sitting at my desk and I can see the room where everything happened. It's a constant reminder. My chest seizes up when I happen to glance that way, and I'm completely breathless.

It's a rough day.

Staying Still

I have days where I don't think I can handle this anymore. 

Today is, unfortunately, one of those days. A crying in the bathroom at a party sort of day. 

I've been wondering if complete upheaval will help. If we move away. Will that make the pain less? Where I'm not reminded of what we've lost -- every day? 

Eight Weeks

It's been just over eight weeks since we last kissed him. I couldn't bring myself to post on Tuesday. I hate Tuesdays.

Like I stated in my last post, I'm starting to find peace. But it's at the cost of a lot of tears. I'm trying.

Minneapolis has been experiencing some very annoying weather lately. Incredibly hot and humid - like a sauna. The air conditioning at work is superb, so I leave every day shivering from cold and am able to enjoy the 90+ weather with 90+ humidity. Of course, this is causing hell on my sinuses.

I feel stagnant in this heat; I need a change. I'm going to see if a haircut will make me feel better. I'm just feeling so hollow these days. It's depression, to be sure, but there are ways to make it better. Other than medication -- which I'm on a therapeutic dose.

Sigh. That's it. Just.. sigh. Emptiness. I don't even know anymore.

Peace

I've been thinking a lot this week. I'm back at work (hooray!) and I've had to share my experience with a few of our patients. They all share the same horrified look when I tell them that he lived for fourteen hours. I don't know how to convey how beautiful his life was, how full of love. I don't know how to tell them that it's okay. It's not their life, and the grief that I carry with me is somehow beautiful in it's own way.

I've been hashing out the idea of peace in my head. I'm really at peace with how everything went. Even though my heart is broken, it's still full of love. I will never be the same, my heart will never 'heal' - it's a complete change to the way we live. Even though it's a change, it's something that I'm becoming comfortable with. It's becoming the new me; I can still be who I was. I'm forever changed, but it's a positive mark. I feel like I have more compassion for other people. I understand loss a lot better now. I can let go of the pain. I can feel the sun and the rain and smile through it all.

I smile when I talk about my son, now. My Henry. Even though I still have tears, I can smile.

My son had a beautiful life. Nothing could have changed how he was, and we know that. We couldn't have done anything differently. We made his life as comfortable as possible, and we loved him as well as we could have possibly done. He breathed the fresh air. He saw the sun. He knew love. We couldn't have asked for more with our situation. Sure, I grieve. I'll never stop. I love him still - and that won't change.

I'm more hurt by the actions of other people than anything. Well, one person. But this is not a place for that particular pain. I'll just say that it haunts me constantly and is making each day nearly unbearable. I'm to the point where I just want to move away, so I can use distance as an excuse to not see them, rather than being just a few miles away. Some things can never be fixed. Some relationships can be pushed past their breaking point. Forgiveness is divine - but I'm so broken by this particular issue, I don't even see how I can possibly move on. Perhaps time will help - but it feels like time is increasing this chasm between myself and this person.

Anyways.

I found a website that I'm in love with. It's the CarlyMarie Project. Here's a sample of the things she does -

And there are quotes like these -

I am blessed that you entered my life, even though it was only for a short time. 
When you left, a piece of my heart didn't go to Heaven. 
Rather, a piece of Heaven found it's place in my heart.

Julie Torrisi

Just a few things to think about. I'm really digging this website. It's beautiful, and.. hopeful. 

Some Days

Some days I think I'm just perfect.

Some days I know I'm falling apart.

And then there's the in-between - the days that I'm right as rain, until I am not. I was folding laundry. My iPhone was playing my songs on random. 'Held' by Natalie Grant came on. I lost it. I'm standing there with a camisole clutched in my hands, staring out the window as dry sobs rack through my chest. I'm very aware that I'm wearing eye makeup, and I try to stop.

The only way I can stop is to write this down. Is that insane? Once it's to form, it can be analyzed -- it doesn't live in my head anymore.

Amelia's birthday is one month away -- from yesterday. She'll be turning two. I'm going to concentrate on that.

I go back to work tomorrow. Phew. Finally.

Back to Reality

I'm going back to work on Tuesday. It's a whole week early. I just need to get back to some semblance of normalcy. 

Nothing will ever be the same - this I know, and accept. I am fully devoting myself to allowing myself the time and patience to learn how to function as a mommy to my sunshine girl and my angel baby. 

I will be patient with myself. I won't punish myself for having bad days. I'll step away/out when I need to. I'll cry when I need to. And that's okay. 

I will keep on reminding myself that I'll never be just magically "over it" - Henry will be with me forever. I'm thankful that I'm not expected to just forget him. 

I will continue to indulge myself. I will continue to work out in ways that I can -- usually heavy cleaning. I will find time to get to the gym, because I'm happier when I'm active. 

I will continue acting like I'm a stay at home mama. I love having meal plans and home cooked dinners -- I love being able to control what we eat. This will not change. 

This isn't the end. This is a beginning of another phase. I'm taking control - but I'm not going to punish myself if I do lose control or poise. It's to be expected. 

I'm going to fall. But I depend on myself and my husband to pick me/us back up. That's just the way that we have to get through this. 

Memorial - Recap

The memorial was beautiful. 

My husband spoke just before the end. It was perfect. He was able to say what I could not - that we feel cheated, alone, and hopeless at times.. but our son lives on, changing people's lives with every day.  His heart will go to help someone else bring their baby home. 

Our pastor spoke eloquently about losing Henry. He spoke about hope, and comfort. 

I only lost it.. well, a few times. I tried. I did the best that I could have done. 

I have to constantly remind myself that it's not bad to laugh. That I can breathe in every new day and it's okay to be amused, or amazed. It's okay to live. I may be suffering, but life continues even when it should just stop. It should just stop until I can get back to myself, until I can comfortably tell people about our journey in person. It's obscene that life continues when you feel so much loss. Like a chunk of my chest is gone. 

I miss him so much. But he's finally home with us - his urn is in our bedroom. I can talk to him all day long. He stays with us when we sleep. He belongs with us - and I'm relieved to finally - finally! - have him with me. 

Our turnout was spectacular. There were between 80-100 people throughout the evening. We felt so supported, talked to so many different people. We felt loved. We know our son was loved by so many people, and they share our pain and grieve along with us. It's just hard to remember in the quiet moments when your eviscerated by sadness. 

But I can see how my life is changing. I'm learning to live in a whole different way. It's not a life I would have wanted for myself - one where I'm wondering how to explain brother to Amelia when she's older, how to tell future (?) children about him, how to keep his memory alive without scaring people. His holoprosencephaly was a rare fluke - we hope - but we're going to do our best to help other couples facing this situation. 

Ultimately.. We've made the best of it. Henry is my angel baby. He's in the stars, in the rainbow on our drive home, in my heart. He's everywhere. When we die, and meet again.. We'll get to have the life we never got here. We'll be able to see him grow in Another Place. Crawl, walk, run. Ride his first bike. Throw the opening pitch in a baseball game. Just not here on Earth. 

Memorial

It's been over a month since we met, and lost, our little guy.

His memorial is tonight.

Jason's writing a speech to give at the service. We've both had a lot of tears all ready this morning.

5pm visitation.
6pm service.

We'll be there until 8pm.

St. Paul's Lutheran Church in Osseo, MN.

Tattoos

I'm seeing a lot of 'In Memoriam' tattoos around. I have one planned, for my children. It's a nest, with a cracked egg/baby bird and the outline of a little bird flying off into the distance.

I'm not sure about this anymore. I don't need a tattoo to show my love for my son.

I all ready got one - on the day that he was born, the first time I saw him. This is going to sound incredibly corny, but, my heart is tattooed. When I first saw him, I was filled with such overwhelming love. And then the fear took over. How long would we have with him? Was he okay now? How will we actually handle this? Will we make it out of the operating room?

It was like a thousand needle stabs into my core, deep into my heart. Piercing through the love and true happiness that I felt when I first saw his perfect face. It's still there. Anyone who has had ink done understands the swelter of a fresh tattoo - the smoldering heat that you feel radiating from the area, the beautiful pain. It's a satisfying pain.

I feel that now, and every day. I feel the pain from losing him - the joy of having so much time with him. The anger that it couldn't have been fixed, that this happened to him and us in the first place. The love that will never go away - not like I'd want it to. The absence I feel, the emptiness, is like a vast chasm in the back of my mind. It's like I'm missing a few ribs. My family should be four people, going through life, loving and learning with each other. I should be laughing at my toddler while trying to get my infant ready for the day. I'm so angry that there was nothing that we could do. I'm happy that he's not in pain. I pray that life support wouldn't have helped anyway - yes, I doubt myself every day. If we had put a feeding tube, a breathing tube, regulated his hormone levels.. would he still be here? I would trade anything to hold him again. To kiss his soft blonde curls. To look into his eyes and tell him that I love him, and always will.

It's a steady burning in my heart. Sweet, pain, and constant.

I don't need any ink right now.

Between Silence

During the rain - in the silence that follows each raindrop - I hear a memory. I hear my husband whispering "He's gone." 

Raw. We're still so raw. 

I think I keep on tearing my heart out here so I won't do it in reality. In public, I can hold it together until I can write it out. Then it's a river. 

Raindrops. He's gone. Raw. 

It's a pain like.. When you hold your breathe until your chest burns. That's the closest feeling I can think to relate.

Music

I'm slowly recovering in all aspects of my life. Physically, mentally, emotionally. 

I'll never be the same. And some wounds will never heal. I wonder if I will still feel flares of anger over betrayals that should (by then) be long over?

I'm using music for my therapy in between therapies. When I'm in the car with others, it's on MPR. With Amelia, it might be on one of her CD's. 

When I'm alone.. The volume is up, and the music always has a heavy bass line. Like a heartbeat. I can instantly lose myself, detach myself from my own life, and just be. I can concentrate on driving, extend my sense of awareness, and just become part of the Jeep. 

Cars don't feel. My heartbeat is the heavy beat of whichever song is on. Cars don't cry, they don't miss people. In this state, I don't have issues with accepting help without expectations of reciprocation. I don't have to be "on". I can just be, just react. 

But then I pick up the little girl I've missed on a deeper level all day, and MPR is back on, and we're back into real life. 

But for a few miles, I felt relief. 

Words

Words save our lives, sometimes.

I finished reading Neil Gaiman's new book, The Ocean at the End of the Lane. In the final acknowledgements, he thanked Stephen King for reminding him of the joy of writing every day. I feel like I can relate. In happier times, escaping and creating your own little worlds, your own little reality.. it helps. Now, I can escape into my own feelings and really evaluate them. I can put them to words and really understand how I feel, and why I feel that way. It's helpful, especially when nothing else eases the pain.

Speaking of pain. I had my gall bladder removed yesterday. What a simple process - it was four hours, in and out. I was under general anesthesia (so I was intubated - yuck!) for about ninety minutes. When I awoke, I was sans gall bladder. Everything went fine. I just look like I was stabbed a few times. But the gall bladder rests just below your ribs - they punctured me in three places there, and then pulled it out through an incision in my navel.

Modern medicine is wonderful. It really is. Today, I'm sore. But that's about it.

Amelia spent another night in her toddler bed. I only had to sleep on her floor for about an hour, before sneaking out to my own bed. It's the first night in months that I've shared a bed with *just* my husband. I didn't get kicked in the face, I didn't get farted on. It was pretty darn magical.

Today I feel better about Henry. I think I'm passing the guilt phase. I'm more and more reassured with our decision to not put him on life support. Especially after being intubated myself - I don't want my children experiencing that unless absolutely necessary.

We're planning his memorial service to be on May 28th, next Friday. I think it's going to be at my church, rather than the Arboretum.. it just feels right. As much as I love the Angel of Hope statue (and he will have a brick there!) -- I just feel like a picnic atmosphere isn't right. And it'll be easier to have a structure to the service/open house. Just a few words, a prayer or two, and I'd like to do a balloon release. I'd like people to come prepared to write down their hopes/wishes for my son, and then we'll release them with the balloons. I think I need to look into a permit for that..

Besides, this way we can have coffee and food in the kitchen. And bathrooms. Bathrooms are always a plus.

And my church feels like home. My heart is calm there - not necessarily because of the people. It's just I've associated this particular building with safety and love. I've watched specks of dust floating through streams of light in the stained glass, and felt comforted. I find comfort in the quiet moments. I want to share this comfort, and I want to seek it out again.

I'm going to go have a nap. I forgot how much I needed to sleep after the cesarean. My body is wiped out.

Anxiety

Amelia seems to be going through another round of separation anxiety. 

I'm nervous that it's due to me. That, because of my depression, she's being affected on a deeper level. Maybe I'm becoming a hover-mom. I don't want to be a helicopter parent, holding her back!

I'm not sure what to do about this. 

There's nothing on the Internet. 

Do I look for a child psychologist?!

Static

Grief is a static state of being. It's a constant buzz in the background, on the good days.

Today was a good day. It might be due to pain medication -- I had a gall bladder attack yesterday. First ambulance ride from Urgent Care back to the hospital. Recommending removal sometime next week. I'm never planning on going through that pain again - it felt worse than childbirth. Well, maybe not entirely. But the fear that accompanies it makes it a lot worse.

With childbirth, you know there's an end. The pain will stop, and you will have a beautiful baby in your arms to hold and to love. With gall stones, there is no end in sight. It's not a definite thing. And it came come back whenever it wants. This attack has lasted 24 hours. If take a full breath, I can feel the pain still - even on Percocet.

Hence, somebody, anybody! Take my gall bladder! It's nice, though, because I won't have to take any additional time off, since I'm all ready on leave.

We went to a carnival today. Amelia got to pet a kangaroo. She loved the animals - except the llama and alpaca. They were too tall, and too eager for the pellets we were feeding them. Unnerved her. But she adored the turtle! It was moving fast, too!

I'm ready to make peace. I'm working on setting up Henry's memorial service. We have paid for his cremation, and are just waiting for our urn to arrive. He's going to be in a pirate ship! My little boy, so much like his father, would love that. I just know it.

I went back to my psychologist yesterday. It was wonderful to talk to her - and to sort all of these situations out in my mind. Ultimately, I'm doing "well" with my grief process for Henry. I'm learning to live without him here with me. But, I keep on having situations come up to complicate my feelings and emphasize my pain. Like burial assistance, or the fight with my mom. Financial distress and being abandoned. Not exactly helping my mental state.

Jason's grandma died last week. I'm going to miss her. I hope she's finally at peace - she was very negative, because people constantly took advantage of her. But she had a wonderful, loving heart. She was a great, loving woman. I really am going to miss her, but at least Amelia was able to know her for at least a short time.

Yesterday, when I was having my gall attack.. I thought I was dying. I knew it wasn't anything I had ever felt before. I thought we'd never make it to urgent care. Earlier this week, I've been so depressed between Henry and my mom.. that -- I'll be honest, because I want to be completely truthful here -- I was weighing suicide in my mind. Just to escape the constant pain, the feeling that my heart has been shredded.

This experience was a blessing, because I don't want to die. I was terrified. I begged and pleaded with my God to help me, to just keep me going to see my daughter grow up. I couldn't leave her, I couldn't leave my husband.

So that's it. I'm glad I got snapped out of it, and I'm glad to finally be able to rid myself of an organ. Ha!

The truth.

I was putting the bed back together, after washing all of the linens. I had all ready sorted through two storage cases, vacuumed the dining room, living room, foyer, staircase, and hallways. I've done four loads of laundry. I prepared dinner. I watched an episode of Game of Thrones. I read a book. I'm like Rapunzel in Tangled.. just keep on going.

Still, I am restless. I can't do enough. I can't stick to one task. I am bouncing between things. Except vacuuming. I vacuum constantly - dissapearing things.

I was putting the bed back together, and I had to go around the giant suitcase Jason and I brought to the hospital. So I opened it, and started putting things away/in the laundry.

I got to Henry's little suit, his tiny tie, his Sweetheart quilt, and his hat. And then I lost it.

I raged. I cried. I screamed. I begged. Anything. Please. Just give him back. Anything. I clutched his little hat as hard as I could back to my heart. If only an essence of him remained, I wanted it in me. I don't know how long I stayed like that. My eyes are swollen, and my lungs hurt. I hurt everywhere, but it's not physical - it's not from overuse. It's from the pain. The constant feeling that part of me is missing.

I don't know where his little Whale jammies are. It's what he wore for his entire life. I want them. I need to hold them, I need them. I don't know if they ever brought them back from when he went away, down to the organ surgery. Maybe they are at the funeral home. My little boy.

He's still at the funeral home. We were denied burial assistance from the county, despite being flat broke. So now we wait for either a surprise amount of money to come to us, or for his life insurance to come through. I just want to bring him home to me. I need him close by.

I put together the shadow box, with a few flowers and his and his sister's handprints. I need another one for his footprints. I put his hat in the shadowbox, because I needed to have it someplace safe. I kept clutching it to my heart. If I pressed hard enough, it felt like my heart was whole again.

I finally screamed in the basement. Collapsed across the dryer, my face in our comforter. I screamed. It felt good. I screamed until my lungs emptied and I felt a moment of peace. And then the world started to move again, and my life went back to feeling as bleak as ever.

I know that it's not. It's just the grief. It'll lighten someday, but the pain is still there. I wish there were a shortcut I could take to healing. But I don't think there's ever a healing in this. My baby is gone. Part of my soul is missing.

I made an appointment with my psychologist for Friday. I'm finally ready to see her. It'll be the first time since Henry left us.

I'm interested to hear what she has to say about my experience so far. I need advice from someone who has no interest in my family - I'm struggling so hard with that. I don't know what to say to her anymore. I don't know if I can forgive that.

I don't know if I can ever write what happened. My soul is missing, my heart is broken, and I am in pieces. This will all change once Jason brings Amelia home. My husband soothes my pain, and my daughter delights my spirit. They're my reason.

Tuesday - Cleaning.

Just when I'm about to sit down.. a song comes on shuffle and I'm bawling. Currently it's Held by Natalie Grant. "If hope is born of suffering - if this is only the beginning..?"

I know that this is only the beginning of the rest of my life. The life that I have to continue on with, without my son. Will the suffering ever.. lessen?

Back to cleaning. I stopped this blog post to actually go hang frames and other stuff. Jason's going to be pissed - nothing is in line. Levels are for wimps. I just needed these things hung!

I can feel my cesarean stretching - but I can't stop. When I stop, something sets me off. I hate Tuesdays.

My house is chaos - I have pulled nearly everything out and am just trying to breath and cool off before re-homing it all.

Henry

This is my gorgeous boy. Henry Alan Butler, born at 10:03am on May 21st. He passed at 11:56pm on the same day - he was a fighter! We had fourteen beautiful and unexpected hours with him.

 We were prepared. At 20 weeks, we found out his brain wasn't developing. The radiologist saw "cystic images" and wanted to repeat the general ultrasound with a full level two. When the tech got to his brain.. she stopped talking. We went on to get a fetal MRI - and it was confirmed. Alobar/semilobar holoprosencephaly, and Dandy Walker Syndrome. My world stopped. I don't know if it's every restarted, or if it ever will. We decided to carry him to term, and pray and hope that it was all just a mistake. 

 Henry developed hydrocephalus. His head was measuring at nearly 16 inches at my 34 week ultrasound. We delivered him the next week, because of my increasing contractions, and my physician's fears that I would go into natural labor and require an emergency cesarean.

We had a prenatal hospice nurse to guide us through the last eight weeks of my pregnancy. She helped prepare us, got us organized (in this huge room - we had so many people with us! The hospital was like a Hilton!) and prepared. We had the organization Now I Lay Me Down To Sleep send an amazing photographer over to document our son's life. Our pastor was in the operating room with us, and performed a baptism immediately after he was born.

My dad and my husband were able to take Henry outside. My son felt the sun on his face, the wind, he heard birds. He got so many kisses from so many people who loved him. His big sister (nearly two) screamed like a banshee whenever someone else would take him away from her to hold him. She still talks about him - baby babble, but she knows. My boy passed in his daddy's arms shortly before midnight. My husband and I have never cried that hard, have never felt so deeply and keenly this loss.

My world still hasn't restarted. My beautiful boy, with his golden angel curls and his daddy's eyes, isn't with us. The fact that we were "prepared" doesn't make it any easier. The genetics came back "clear" - but there's always a chance that any following pregnancies may have the same diagnosis. Terrifying.

If anyone has the option or time, we really recommend Now I Lay Me Down To Sleep. I really didn't even realize our photographer was there. Here's our photos from that day - http://henrybutler.shutterfly.com.

Running Away

Just when I think I'm finally going to get through a day without crying, my arms start to ache. They're empty. It's June 8th, and I should be 38 weeks pregnant. I shouldn't be waiting to bring my son home from the funeral home. I shouldn't be sneaking out of my own bedroom to go sob on the staircase. I should be able to sleep.

I'm trying not to take any pills. I'm relying on my tea currently.

There are times that I just want to pack my family up and move away. Far away where people won't ask me where our baby is. Far enough away so I won't have to face the awkward pauses, the stilted conversation. Far away, to the point where I won't throw up my walls when someone tries to hug me.

I started to watch Juno tonight. I relate all too much to her. I had to turn it off after a few minutes, but I relate so easily to a wise-cracking tough girl. Especially when all I want to do is be held and cry.

I want to run away from all of this. I wish running would help.

No New Baby

Amelia brought me a book to read her, as we do every morning. 

I don't know how she found it. I didn't want to even look at this. It's called "No New Baby" -- and it was a gift from our perinatal hospice coordinator. 

It's a great book, don't get me wrong. It's just painful to see or read. 

I'm serious about not crying in front if her. It's not okay. She doesn't understand why. 

The people at Hennepin County Burial Assistance aren't exactly the most compassionate.

Haven't cried this hard all week.

In front of my toddler. Trying to get it together so she's not permanently scarred.

And they can't talk to anyone else because it's my application.

I just want to bring my son home.

Tuesdays

I hate Tuesdays. 

I think Tuesdays should just be skipped from now on. It's the hardest day of the week. 

It's been two weeks. I HATE Tuesdays. 

Amelia's daycare is on vacation this week, so she's with me. It's a morning of hiding tears from her. She doesn't understand the situation in full - but she understands tears and sadness. I want to shelter her as much as possible. 

I hate Tuesdays.  

Insomnia

Not a day goes by that I don't miss him. I don't forsee that going away, either.

I'm up late tonight. I took a three hour nap with Amelia, and then I took my Percocet before trying to go to bed.. if I don't give in to the woozy feeling right away and go to sleep, I'm up for a while. And tonight Return of the Jedi was on. It was a losing battle.

So, I put away Amelia's clothes from the hospital. Delayed, I know. And then I put away the rest of her clean clothes. Then I went through her socks and sorted them, and culled out the ones too small. And then the hats were just sitting there, being all mixed up by season and size. That had to be done as well. Then I decided to make some tea.. and do the rest of the dishes. And straighten up Amelia's toys a little.

Insomnia. It makes house cleaning almost fun. Except for the crying jags, I could almost appreciate it. Once the pain meds wear off, I'll probably curse myself for overdoing it again. Tonight I swear I'm not moving any furniture. I learned my lesson. And my vacuum isn't that heavy - super light.

Pinterest is calling my name. I need projects to work on over the next few weeks, while my body heals. Some furniture painting, perhaps. Amelia's starting to get into dressing herself - dress up is next, we may as well repaint the cedar chest (again) into her own dress-up chest. Pink and white and green. I need these projects, otherwise.. I just stop existing. I need purpose. I'll probably be going back to work as soon as I'm allowed -- but until then, "light duty" projects to occupy my body while my mind heals and copes. I miss my boy.

I've also been thinking a lot about family. I won't go in to it here, but, I've been trying to avoid that bit. It's funny. The people that I thought would be there for me.. well, they haven't been. They're in the wind. The ones that I never thought would be around -- they are here.

Then there's my siblings. They've always been there, and they've continued to be people that I can lean on when I'm just exhausted. I love that I can call my sisters for nearly anything. My husband is amazing -- but sisters are different.

I'm just not going to think about it anymore. I'm trying to bring my son home from the funeral home (cremations are expensive.. and especially in the same week that the mortgage is due..) -- and that's my main priority. Our county has funeral/burial/cremation assistance, but I need to get the application in by tomorrow. Fingers crossed.

My tea is ready.

Genetics

Due to some miscommunication, Henry's full genetic testing was not done. By the time I thought to check, it was too late to collect a tissue sample. 

What does this mean for us? 

All of the prenatal genetics came back normal. But they don't do a full genetic scan - just an array of the most common genes that cause Holoprosencephaly. I think we took both a high-level genetic view and an in-depth array of the 7 most common genes to cause this condition. 

So we should be safe. It should have just been a "fluke".  Unless we have a rare gene firing, causing the HPE. There's a very, very slight chance of this happening. 

If there is a genetic secret, our chances of our next child having this run to 75%, maybe. 

If not, we should have another perfect little Butler. 

All of the testing happens between 14-20 weeks.  If we decide to have more children.. The first few months will be hell. I'll be completely terrified. Can we risk going through this again? Can we risk doing this to Amelia when she's older? 

She still asks for baby. Jason and I pretend she's asking for one of her numerous dolls. 

We both know it's not true. She's asking for her brother. But there's nothing we can even possibly do to explain it all to her. 

I can't wait until my niece is here. That will help Amelia, I think. And it'll help me - baby snuggles! My sister has a little miracle going for her - and I'm so thrilled. ❤

Decisions really aren't easy. We won't really think about it for at least a year. But it won't be very far from my mind..

20 Things [link]

http://imprintsontheheart.wordpress.com/2011/03/27/20-things-angel-mommys-wish-you-knew

Had to share. It's spot on. 

20 things we wish you knew. 

Revelations

Today I've realized that the milestones are going to be harder than I ever imagined.

But I think that I did well enough on the first one. Today, I feel the strength that I prayed for so very hard for yesterday.

I remember my son's blonde curls. Well, if his hair was a bit longer, it would have curled. His gorgeous brown-green eyes, identical to his father's. I really believe that he encompassed all of the ideals I've had of angels. My boy is an angel, and I find peace in that.

Religion is something that I've shied away from throughout my life. I've researched a number of religions - Western, Eastern, New Age.. I've looked into them all. But I find myself back with Christianity. I feel comfortable and safe here. I believe that my life has purpose, that my son's life has purpose. It's what got me through these past few months. Although I may not believe in everything my particular church teaches, I know that I am loved. And that my God wouldn't do this unless I could handle it.

Bad things have to happen. That's just the world. You have to carry the burden that you're given. But it's in your hands to make it into something good.

My son's life, although short, was amazing. He saw the sun. He breathed in the air. He received kisses from so many different people. He's changed lives -- and saved some. His life has reestablished a link with my family that I never thought I would get back. He has realigned my own career and educational goals. I really believe he had so much purpose in such a short time. What a miracle he is! He is my angel.

In his death, I feel peace. We spoke a lot about quality vs quantity in his life before my surgery. Yesterday, I doubted our decision. If we had intubated and shunted him, if we had installed a feeding tube, if we had hooked him up to so many different machines.. would that have changed anything? Yes. He may have lived longer. But he wouldn't have been held. Or kissed. And he'd never have been able to go outside. When he did pass, it would have been on a bed. Not in his daddy's arms, getting kisses from the both of us.

Jason and I did the best we possibly could have done for him. And, in return, he has blessed us in so many ways. I'm certain I want to have more children -- after some more extensive genetic testing -- because Amelia still talks about him. She took my phone the other day, and was talking to him. My lock screen is a picture of the two of them. She loves him still. Even as a toddler, she knows. When she's older, I hope she can find joy in his short life. And I hope she has the opportunity to be a stellar big sister again.

It's beautiful outside. I feel peace, and a quiet place in my heart. The ache isn't so bad today. I can breathe.

One week.

It's my first day at home alone. 

I'm thankful for this. It's a week since we met Henry, and a week since we've said goodbye. I'm glad that I'm alone today. I need to grieve without judgement. 

I'm trying so hard not to harbor hate and anger in my heart. We were so blessed with our fourteen hours. 

But it's not what I wanted for my boy. I wanted him to live, to grow up, to learn and discover. I wanted him to get kisses from mommy and daddy every morning and every night. 

His life has meaning - he's saving other people. As noble as that is, it's not what I wanted. 

I wish I could go back one week and relive every moment with him. I wouldn't share any of my time with him. He would never leave my arms. 

I'm trying to be thankful for what we did have. I'm trying not to be angry that he's gone. I just miss my boy with my entire heart. I ache. I don't want to lose the memory of his breath, his little noises, his warmth in my arms. I don't ever want to forget his soft wavy blonde hair. I want to remember the way his skin felt so soft to my fingers and lips. 

In a perfect world.. I would have a happy, healthy little boy in my arms right now. I'd be posting pictures of us to Facebook. I'd be dancing around the living room with him. I'd be laughing at my stained shirts after feeding him, not ashamed and hollow when my breasts leak unwanted milk. 

I'm so torn between wanting to try again, and being absolutely terrified of trying again. No child can replace my baby. Nothing and no one can replace my Henry. Amelia is such an amazing big sister. She has so much love, and in time, I want her to have another sibling. 

But can I handle that? Can I handle twenty weeks of terror as we wait to see if the holoprosencephaly will appear again? The prenatal tests came back negative -- but we're not sure if we got the sample for the full genetics work up. If we didn't.. Can I take that gamble? 

I don't think I could ever survive this again. It's just too much. No one should ever have to go through this in their life. 

I don't care if my son ends up being the savior of the human race. He is my son - he deserves a life with us. He deserves kisses and time outs and chances to learn about life. 

His life was beautiful. It has purpose. I'm holding on to that, but it doesn't come close to what he deserved. 

He deserved the world. 

Six Days

It's been six days since I last held him. 

I miss him so much. Amelia opened my phone, looked at the lock screen, and asked, "Baby?"

She was looking at her brother. I had a moment. She loves him so much. It's the hardest thing in the world to tell her that baby went bye-bye. 

And then I go cry in the bathroom for an hour. Even though we had time to prepare, nothing prepares you for the loss of your child. I'm so hurt. The pain never goes away, you just learn to live with it. It's learning to live with a gaping hole in your chest. And pretending that everything is just fine. 

I have my good moments, and my bad. I'm trying to keep them mostly positive. But I have to mourn, and I do. I miss my baby. I wish this never happened to us. I can't change any of that, though, and all I can do is miss him - and keep his memory. 

I'll never abandon my daughter. Not like I've been. Amelia will never know this particular pain. 

That's all. Watching The Princess Bride. They're talking about the emptiness inside consuming Buttercup, her love for the missing Wesley. I can relate. It's a sucking emptiness that takes your breathe away. 

But again - I have a husband and daughter. They are my life, and we all feel the pain of mourning. It's not just me. I'm looking forward to our vacation together. Amelia will love the lake. 

Quiet mornings

I miss him so much.

It's worse when it's quiet. 

I'm up before the rest of my family. It's too quiet in the house. So I make coffee, and head outside to the yard. It's peaceful.

Birdsong. The wind in the trees. Occasional owl. Squirrels running along bark. The occasional railroad noise. North Minneapolis is cooperating with me this morning. 

I think this must be how heaven sounds. A cool, gentle morning. 

In this moment I know that my boy, my Henry, is safe. The breeze cools my tears and they feel like kisses. 

He's safe. He's free. He's happy. It doesn't make missing him any easier. But it helps. 

Medication

When I'm on my pain meds, it makes my emotional pain easier to deal with. 

Unlike yesterday, when I was hours past my last dose. The combination of increasingly severe physical pain highlighted my emotional pain and made it unbearable. 

I can see how that makes pain meds addiction. I'm going to start weaning myself off of them once I get the okay from my docs. I've worked in healthcare for far too long to become a drug addict - I've seen the destruction they cause and the pain they leave behind. 

Just saying. It's been on my mind since they started me on narcotics. Not me!

Replenishing Supplies

We're home now. 

Everyone was right when they said it'd be harder once we left the hospital. I've been on the edge of tears for the last three hours. 

I'm not mad that he's gone. I'm not mad at god, myself, anyone. I just miss him so acutely. 

I'm at the grocery store now. Had to get my medications filled, and restock the fridge. I made it through the bakery department before people made me go sit down. Yeah, I know, I'm about two hours pass my pain meds. It's killing me - but won't make the pharmacy able to fill it any faster!

I left Jason to shop with Amelia. I was also tired of all the condolences. Yes, from a heartfelt place, but I just can't do it right now. Maybe when I'm medicated and the pain isn't so bad, maybe then I'll be better. 

But, really. Most insensitive comment today - right after one person says that they're sorry for our loss, the one to their right starts commenting on how Amelia needs a playmate. 

I almost lost it. She is a big sister, and she loves her little brother. 

Just sitting in the pharmacy, waiting for my husband and my drugs. Feels like a weird country-rap mash up. 

Fourteen Hours

On May 21st, Henry was born into this world with the help of two amazing surgeons. My cesarean went absolutely perfectly.

Every miracle we asked for, we got. He flipped head down on Monday, and that allowed us to have a low transverse incision. This means that this surgery will not impact future pregnancies, should we decide to have more children. He was more than cooperative.

Despite only being 35 weeks gestation, Henry weighed in at 8lbs 9ozs, and 23 inches long. Compare this to Amelia! She was 41 weeks, 8lbs 2oz, and 20.5 inches long. Henry grew - not just his head! - at an amazing rate and it allowed him to spend more time with us.

Jason was able to cut his cord. Our pastor was with us in the OR and baptized him immediately, since we had no idea how much time we'd have with him. We have this all on video - simply gorgeous clips, minutes of his life captured for us to relive when we miss him.

My stitches are perfect. They're healing really well so far. It's definitely different from delivering vaginally - you don't have the full body aches, but the aches you do have rival that helpless feeling that comes along with delivery. Percocet is managing my physical pain.

My family was here to meet him. We had a crowd waiting for us, coming back from the operating theater. Amelia got to meet her little brother - and that was beautiful. She loved on him so much! She was absolutely irate when we took him away from her to meet his grandparents. She followed him around, demanding him back in her angry toddler speak. Arms up, grunting, and stomping her little feet. It was adorable.

I got to hold both of my children. I wasn't sure that would be a possibility. 

My family.

Henry made little purring noises with each breath, which was both adorable and scary at the same time. Within an hour, we knew he was crashing. His oxygen saturation levels were steadily declining. By noon, weren't sure how much longer he would hang on.

He really is beautiful. Perfect cupid's bow mouth, his daddy/s eyes. He looked a lot like my dad - forehead, chin, nose.. Just beautiful. 

Grandpa & Henry

We spent the day together. I was bedridden because of the spinal, but Jason and my dad brought Henry outside for a walk. He breathed fresh air and was around the spring flowers. I like to think it was a preview of Heaven.

We had a big group of people. I'm trying to remember all of who was here - but all I can remember is his perfect little face. The warmth of him in my arms. His eyes, just like Jason's. He is perfect. 

We started giving him morphine around 7:00 pm. He refused to drink anything, and refused to keep the morphine down. Henry was a little fighter.

By 8:00 pm, his saturation levels had dropped below a significant point. They hovered around 25 for the next few hours, removing his candidacy for liver donation. He was still a candidate for the heart valve donation. 

We only put him down to check his vitals. Otherwise, that boy was always in someone's arms. He felt love, warmth, and happiness. And hundreds of kisses in that time!

At 10:00pm, he really started to decline. 11:00 he perked up a bit, and then declined again. My son went to Heaven at 11:56pm on May 21st, 2013, from his Daddy's arms. 

Jason walked him down to the operating room, where LifeSource took care of him.

My son lived for fourteen hours, and they were filled with love and miracles. Every moment with him was perfect. 

We were blessed for one day. Now, we'll be blessed for the rest of our lives. We're seeing signs that he's all ready watching over us, our very own guardian angel. Amelia talked to him all night on Wednesday, and he's visited a few others as well. I like to think that he can become an angel - especially since he was so very, very loved by so many people.

Goodnight, my sweet prince. We love you. 

5/21/13

Every time I start to write.. I have to stop. 

There simply aren't any words yet. We're still processing.

I think that tomorrow may be brighter. I'll write then. Until then.. He was born, he was loved unconditionally, and he passed peacefully in his Daddy's arms. 

The best fourteen hours of our lives. 

Sigh.

I'm feeling a bit depressed today. There are people that may never get the chance to see my son - to get the chance to hold him. It'll be like he never even existed.

Sooooo..

So, when I mentioned his ultrasound revealed how big Henry's getting?

Yeah. He's starting to make my physicians really nervous.

My cesarean has been moved. To next Tuesday. I'm surprised, again, at the emotions I'm feeling -- scared, excited, nervous, terrified, relieved. Wow. Tuesday.

Two Weeks

Mother's Day was lovely. I spent it with my daughter. She was super cuddly, and a total mama's girl. We then met my family at a great park, and the cousins played their little hearts out. Of course, we were right on the lake.. so it was nice and windy/chilly. Too windy. We took our picnic back to my brother's house and just enjoyed the day, on his deck, buffeted from the wind. Amelia was totally pooped after this busy day of playing!

(Yes, there was a baby seat, she just loves her daddy!)

I had another ultrasound yesterday. We were looking at his growth. So far, he's measuring at 37 weeks in the abdomen, and his head is 15 cm. It's past the "week" marker. I looked at Amelia's growth charts, and her head (albeit tiny) was 15 cm at four months. Ultimately, when he's born.. I don't think it's going to look monstrous. Not like I'm worried about how he looks - I just want to be prepared for everything and anything. 

Since he's measuring so large (10 lbs of baby, placenta, and fluid in my belly currently! Whew!) - we're really hopeful to hit our goal weight of 5lbs (torso - not head/fluid) so that if he does pass in the first few days, he'll be a candidate for the heart valve donation. It's looking good for that. 

I'm so torn. I want him to be perfect. I want him to be happy. I just know that his brain won't allow him to feel so many things - emotions, pain. The neurologist has suggested that he will lack every means of communication. I want to hold on to him as long as possible - but that feels so cruel. I love him, and my job as his mommy is to make his life as fulfilled as I possibly can.

This doesn't mean that it's going to be easy. I'm amazed at the emotions that I'm feeling facing this C-Section. It's really been a full gambit, a roller coaster. I try not to think of it most days, but, sometimes I'm forced.

I'm wondering what to tell my patients when I come back. They all know me - and are friendly with me - but I try not to ruin their days with my story. So, I'll come back in ten weeks and.. then what? Say everything is fine? Will I be able to talk about it then? Will he still be here? 

I hate dwelling on the unknown. So, here's what I know. On May 28th, at 11am, I'll meet my son. I will kiss him. I will love him with my enlarged heart (because you don't love your other children less - your heart just grows to accommodate the new ones). Jason will love him. We'll hold him, and then we'll take it from there. He has two outfits, and a few hand-me-downs from his cousin (that I'll have to wash this weekend and get ready to go, in case we need them).. and a bassinet waiting for him at home, whether he needs it or not.

Joy

I've been missing something in my life recently. Joy.

It's my own fault, too. I mean, I've been concentrating on Henry's end of life plans so much that I forget that he WILL have a beginning. Even if it's only for moments, I still want to feel the joy at his first cry. I want to cry in happiness when I see his face for the first time, in real life.. 3d doesn't count! I want to have a happy experience, just like with Amelia. I'm not going to mourn for the rest of my life, and I don't want to mourn him while he's still with us. When he is gone, I will celebrate the time he had with us, and treasure each moment in my heart for as long as I live. While he is here.. I will find the joy in my heart and keep it soaring.

Thing is, this is entirely in my power. I can make this a happy experience, and then celebrate his passing - and his gift of life to other babies - or I can continue to dwell on what's about to happen to ME.

I think I've been selfish this whole time. I realized that yesterday. I saw my son in 3D yesterday, and his beautiful little face made my heart swell. It was exactly like it should be.

So - here's to making this joyful. It's going to be better for me, and for him.. and for the rest of our family.


The surgery is making me nervous. I have complete faith and confidence in my care team - two of the most amazing docs I know are going to be performing it - and I know I'm in good hands. But.. just the experience.  I've been talking to some friends who have had routine c-sections, and they've all had positive experiences. I know it's going to go fine. I'm really uncomfortable with the thought of being conscious and able to feel the tugs and.. I don't know, a breeze on my intestines. Weird!  But, I'd rather be conscious for Henry's first breath than under general anesthesia.

21 Days

Three weeks until my Cesarean.

I've got too much to do. I showed a friend one of the pictures of our foyer to describe where we have our motion detectors set up -- and I almost cried. The caption was "My messy, messy foyer!"

Yeah, no. There is no mess like a toddler mess, because the toddler mess NEVER GETS CLEAN.

I want my house back. I want my foyer to be cleared of clutter. It's hard to bend over at this point! I was picking up burger off the floor (cat was full) and was out of breath. I'm measuring so far ahead all ready - it's like I'm 38 weeks! [NOTE: I'm 32..]

BUT I NEED TO CLEAN.

I think this is deadline-induced nesting instinct. I want to vacuum my stairs. I want my office cleared out and acceptable to spend time in. I want my foyer back - and I want to get rid of the bookcase in the foyer that is allowing my (amazingly frustrating) cat to set off our burglary alarm - and thus giving me a stroke every so often.

I want my sheets washed, I want my clothes to be sorted and put away by season, I want my closet re-organized, I want my kid's toys cleaned and sorted through. I want my floors vacuumed and Pledge'd. I want  to hang my jewelry board in my room and get it away from both animal and baby. I want my kitchen organized in a way that actually functions.

Don't get me started on the basement. I'm not allowed to go down there right now. And heaven forbid I start thinking about the little flower garden I wanted to plant. Or the fence we need to build.

I'm feeling this anxiety go all the way into my fingertips. But I'm stuck with my belly. And disgust at the general state of my home.

I just want to say his name. Over and over. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry. Henry.

Deadline

My cesarean is scheduled for Tuesday, May 28th at 11am.

So. Now we have a date. We have our birth plan/hospice plan all set to go. We have all of our resources lined up. Everything's all set.

I have nothing left to plan. It's in some (very) capable hands. All that we have to do is.. wait. And think. And feel.

That's the part I'm having an issue with. Feeling. Getting through my emotions. I keep a smile on my face - but it's not necessarily genuine all of the time. I'm chasing ideas, projects, thoughts -- all to keep from thinking about what's going to happen AFTER my procedure.

I need to start coping with all of this. That on the 28th, I won't have him kicking me anymore. He won't be safe and sound in the womb. I'm automatically stopping to stop the tears from coming, even when I'm alone. I need to comprehend that it's okay to cry. That I am allowed to feel. I threw myself into planning so I wouldn't have to face this. I don't want to. I want this to be over - like a book. Close the chapter, don't let it bother you again. That's not going to happen. I can't lose my mind to my own grief - I am blessed enough to have this time before to start my process, to begin to heal before the true blow is felt. Nothing will prepare me for this, I'm sure, but at least I get a chance to try. I need to face these feelings, these emotions, so that I can be the best Katie I can be. Then I can be Amelia's -- and Henry's -- mommy. I know all of the clinical and textbook things I should go through - which is a reason I even started this blog. Get the feelings out. Write it down. Some things won't even surface until you start going down that road.

But is it hurting me, ultimately? I don't go back and read my own posts. I can't. I don't know if I even can. But I'm past the point of screaming in my shower - I'm past the 'Why me?' howl in my car. I'm still shaking at times, still falling apart when it seems least convenient, but I really need to let that happen.

Someone told me today that they're worried that I'll hold it all in until I completely break down. I can't collapse - I have to start taking care of me and recognizing that what I am feeling is valid and natural.

The Justice League Reunites

We have another care conference today. Hopefully we'll have a Cesarean date.

Sigh. Fidget. Nail-tap.

I'm getting impatient. The skin on my stomach is numb - that never happened with Amelia. I'm only 32 weeks, but I feel like labor is impending. I'm worried that I'll go into natural labor and need an emergency c-section. Not my cup of tea. I just want everything to be scheduled, nice and calm and relaxing and predictable. I'm wondering if there's a link between any of Henry's conditions and early labor.. HPE, Dandy Walker, or hydrocephalus. I haven't found a solid link, but I'll ask my perinatologist once I see him.

We'll see!

The Little Light

Jason & I met with a social worker last night. She's with Children's Hospital, the Deeya program. Deeya means 'Small Light' - and it's the perinatal hospice program that is being recognized across the country for families with similar situations. That is to say, facing the impending death or lifelong handicap of their child.

We met Martha at Caribou last night -- she was going to come to our home, but Hurricane Amelia and Tropical Storm Ardis hit hard yesterday and I'm too rotund with Henry to bend over and pick up the entire house -- and the first thing she did was give us two quilts. Volunteers make quilts for the children associated with the program. Amelia got a lovely print, and Henry has a Clifford themed-blanket. It was enough to make me tear up. There aren't any words for the quiet kindness of strangers. I'll never know the people that carefully put together each of these quilts - but for my children, they'll have them as memories. Amelia will know that THIS is her little brother's quilt. I guess what I'm saying is - when you do something like this, it's really appreciated. Really.

We went over what Deeya does for home hospice care, what to expect, and what sort of care we want for Henry. At what point do we want medical intervention? What are our goals for this experience? Did we want certain photography?

Amelia was still cranky, and her eye started to goop, and she was tearing that coffee shop apart. She had a blast, while we chased her and tried to have a very important adult conversation. [Yeah - we're pretty sure she developed pink eye. We both thought it was just a bit of sleep in her eye from her nap time - but within an hour, we both noticed the goop kept on coming.. by evening, that eye was turning pink. Too late for urgent care - making an appointment this morning to have her checked out by her pediatrician!]

Our social worker with Deeya did ask to be present at the next Care Conference meeting.

She also suggested we bring our pediatrician.

My care team just grew to eight people. Wow.

It's sort of like having your very own Justice League..

Met with my care team yesterday.

What an amazing experience. I was in a room with four professionals who were doing everything they could for our Henry.

The MRI showed that the left side of his brain is swelling with excess fluid. About five cups currently. The right side is being squished away from the pressure.

What this means is that we have two options. The first being the cephalocentesis. The second would be to wait and do a cesarean.

Cephalocentesis is too often a fatal procedure. We would have to get permission from our ethics committee, as well as the hospital's ethics committee.

Here's a great breakdown of HPE & this procedure : http://beyondtheshortcoat.wordpress.com/2009/05/10/holoprosencephaly-and-cephalocentesis/

We've decided to go farther to term. The farther along we go, the better chances we have of using his heart valves for other babies.

The longer we wait, the better the chance he has to survive a few hours/days. There's no guarantee - but, we have a chance to spend some time with him.

We're looking at a cesarean at the end of May, when I'm around 36 weeks. We want to schedule it early enough so we won't chance me going into labor early. Early labor would mean an emergency cesarean, and we want this whole procedure to go smoothly and with the correct staff on hand. The chance that I might walk in with heavy contractions at 3am on a Sunday is too great a risk to take.

Our next big decision is to discuss just how far we want to go with comfort care measures. Do we want to shunt him immediately? Do we want to intubate him? Or do we just want to hold him? It's a big decision to make - to keep him with us or send him away to NICU to keep him alive as long as possible.

It's boiling down to quality of life versus length of life.

We can handle this. God gave us these decisions to make, this child to care for. He wouldn't do this without a plan. If it means that Jason and I are to be support for other families facing these issues, if it means that our experience is going to be a comfort for others, so be it. I've given myself up to the situation and am going to do as much as possible for my family. Any decision we make will be the right one for us.

On a pregnant note, all I want to eat is egg rolls and cream cheese wontons from the place by my old high school. Might have to make an Osseo trip today..

Meeting today.

Our big meeting is in two hours.

Where we find out the MRI results. Where we'll decide what's to happen next. Where we can maybe get a glimmer of what to expect.

I'm panicking. Not mentally, but my body is shaking. I'm lightheaded. I've only had a few anxiety attacks in my life - and I feel like this is one of them. I checked my blood pressure, and that's normal.

The closer I get, the more I feel it in my body. I'm forcing my mind to remain calm. I wish everything else would listen.

Sweetheart

My favorite and most deeply felt term of endearment is "Sweetheart."

It just has a pure feeling to it. You make my heart sweet. I'm sweet on you. It's a term from yesterday, and it's a classic. It brings to mind men in straw hats and suspenders courting blushing ladies in full skirts. It reminds me of every black and white wedding photo - especially if that photo is from the 18- and 1900's.

When my grandma died, my grandfather engraved her headstone with "I'll never forget you sweetheart" - and that phrase has also been inscribed on my heart.

I'll call a lot of people sweetie. But sweetheart, that's reserved for the people that make my heart sing. My husband, daughter, and my son.

I guess that's part of why I love the Lumineer's song "Ho Hey!" so much. And why I get teary when Amelia sings along.

You're my sweetheart.

Saturday.

Trying to keep a smile on gets old some days. Especially when I wake up feeling blue. I still have my responsibilities -- my daughter. Amelia makes my heart smile.

That's so bittersweet. One child makes my heart happy, the other's uncertain future tears it apart. I hate living in limbo.

Monday is my big meeting with all seven people involved in our medical care.

It seems too soon. And too far away. Again, so completely torn. I'm looking forward to a resolution, but I'm also dreading the outcome.

We met with the organ donation team last week. Henry can definitely donate his liver - the cells can help up to ten other babies.

If he's at least five pounds, he's a candidate for heart valve donation. That's a bit more unlikely, but it's something to hope for. Premies can't have artificial heart valves, they can't make them that small. So being able to give that gift would be very life-changing to other families facing losing their babies much too soon.

MRI vs. Katie, round 2.. FIGHT!

Well, that was uncomfortable.

Yesterday I reached that point in pregnancy where baby has taken up all possible space in my abdomen and is pushing everything else around. This accounts for a number of wonderful and fascinating things to happen to the female body! Including, lack of lung capacity and increased flatulence!

When laying flat on my back, it's hard to breath. He's sinking back into the abdomen and stretching out - my lungs are more constrained than ever. I'm labored walking up a simple set of steps. He's also pushing on my hips, and my nerves leading into my hips. I can't lift my legs without help. I'm like a freaking turtle trying to right itself after getting flipped over. Whine whine whine!

Anyways, add this to being in a tube. And you can't lie on your side. Your hands can't touch. You forgot your lip balm and there's a cold dry wind blowing directly on your face so you can pretend like you're not in a confined space.

Oh, and then they tell you to breath normally. There is no normal anymore. So, I breathed in time to the music. Which, apparently, was pretty fast and shallow. I started getting lightheaded and nauseous about fifteen minutes in. Requested a short break, once I was able to sit up - fine. Absolutely fine.

I had my feet elevated in the MRI. My excess amount of blood was really messing with me. The radiology tech was fantastic - super nice, kind, understanding. I was fine after three minutes, went in, and we started on the "Hold your breath!" portion of the torture.

Yeah. That's pretty hard when you've got a belly measuring 34 weeks. Huge. I totally failed at holding my breath for 28 seconds. But I faked it well enough by gasping for breaths between magnet passes.

Results should be to my Neurologist by today. Then he should call my Perinatologist this afternoon. I don't know when they'll get to me - either today sometime or on Monday. I'm okay with either. Nothing we can really do at this point.

Huge meeting on Monday. We'll be deciding which option is best for our situation (Classical C-section, drain fluid & natural, drain fluid & transverse C-section) and when it'll be in place.

I may or may not have all ready held time in the operating room for May 1st. :) I'm really hoping we can drain his fluid and do a transverse C-section, I feel like it's the easiest course to take for him.

Disney Advice

Just keep swimming, just keep swimming, just keep swimming, just keep swimming, just keep swimming..

Just keep on going. Smile. Be kind. 

I've accepted things as they are, and can't change anything about this situation except for how I can handle it. I'm making the decision to live and carry on, you know?I can't just drown in sorrow all the time, that's depressing. And fattening. 

The MRI is scheduled for tomorrow afternoon. We should have more results on Thursday. 

Ultimately, I'm having a big party of health providers on Monday. I'm going to have my Perinatologist there, my neonatal hospice coordinator, my doctors - and my husband, of course. 

I've said this before, but I'm just so lucky to be where I'm at. I'm surrounded by such love and support. I can't imagine having to face this alone, in another clinic/place. I'm really blessed. My son is blessed. We're going to get through this, and I'm going to be exactly what he needs. 

Updates, and an recap.

I feel like it's time for an update and a recap. First, the recap.

I'm 30 weeks pregnant at this time. I'm lucky enough to work in an OB/GYN clinic with amazing providers, staff, and patients. At our 20 week ultrasound, something wasn't right. I had a level 2 ultrasound within days. The level 2 ultrasound then referred us to get a fetal MRI.

The MRI confirmed what our perinatologist suspected - Holoprosencephaly [HPE] (where the brain fails to develop into two hemispheres) and Dandy Walker Syndrome [DWS] (cerebellum fails to fuse). Our prognosis at that time was not good. If he were to live, he will never move independently. His eyes will (probably) not be able to track light/communicate. He has a possibility of being both blind and deaf.

Over the last ten weeks, my husband and I have been devoted to doing research on these conditions. We've even found a splinter of hope in the stories of other families affected by HPE and DWS. I have had fantastic support from my parents, and my workplace.

I've been forced to remind myself that the people who ask about my (ever-increasing) bump don't know our troubles or diagnosis. They come from a good place - most of these people are my patients, or strangers. Everyone feels the need to comment on a pregnant woman. I've been trying to find the joy I felt when I was pregnant with my daughter - our son is very active at times, and I try to smile and enjoy his little nudges and kicks. It's very difficult. But, as I said, Jason and I have had hope for the last week. Our son could possibly live.

Yesterday, I had another level 2 ultrasound. We checked his heart, and all of that. His heart is fine! No defects to worry about! But..

His head is measuring at 40 weeks. I'm 30 weeks pregnant. He has developed hydrocephalus. This is a condition that occurs with fluid on the brain, enlarging the entire head. This is what we hoped/prayed would not happen.

This means, I am to have another fetal MRI. We are going to re-examine the brain, try to assess his compatibility with life. His prognosis is lower than ever before.

We need to deliver him soon. The larger his head gets, the more dangerous for both of us. Depending on the results of the MRI, we have two/three options.

1. Classical C-Section - This is a very large vertical cut. It would be a very difficult delivery. Also, with a classical cesarean, any future children would have to be very well planned and monitored. It would mean increased testing, early c-section, and possibly difficulties conceiving again. Cons : I don't want this. With our son's condition, it would be a very difficult operation.
   
2. Drain the fluid, natural birth - This consists of using a (needle?) to poke through his skull to the pockets of fluid causing the hydrocephalus issue, and then inducing labor. Pros : Hey, 'natural' birth! Cons: He's breech, might not work.
   
3. Drain the fluid, "modern" C-Section - Again, really big needle into my belly, through his skull, but then a lower transverse ("normal") c-section. Cons : People cutting into you when you're wide awake and feeling every pull. But he's breech, so, it's the most desirable option. 

 I'm just feeling so lost, so crushed right now. The process of draining his fluid may or may not injure him. He may or may not be stillborn. His prognosis is shrinking every time. I just want to hold him in my arms, feel his little breaths, kiss his forehead.

 We're trying to hold off on anything until 32 weeks. Another week and a half. I wasn't expecting this. I was expecting nine more, ten more weeks of pregnancy. Like I said, it seems that the longer we wait.. the more dangerous. But I want to give my son a fighting chance. 32 weeks, maybe. Maybe. Maybe. Maybe.

  I'm preparing for him to be stillborn.
  I'm preparing for him to live for an hour.
  I'm preparing for him to live for a day.
  I'm preparing for him to live for a week,
  I'm preparing for him to live for a month.
  I'm preparing for him to live for a year.
  I'm preparing for him to live for years.
  I'm preparing for him to go to college.
  I'm preparing for him to outlive me.

  I just have no answers. No answers at all. We can't know the future, we can't even dream.

Lost

When I was five, I saw the ocean for the first time. Atlantic.

I stood in the surf, just to my ankles. I was completely hypnotized by the waves rolling in, the vast expanse that stretched on forever. I heard my name called from the beach - and I turned back. The tide had pulled me out little by little, so my knees were soaked.

I don't exactly remember how I felt in that moment. I was a little scared, I think. But now I look back and feel an intense loneliness. I feel that now. I'm being pulled out to sea. There's only me. Only I can make the choice to turn around.

Professional Help

I'm meeting with a psychologist today.

I'm eager for the professional guidance. This is, after all, close to my target career. I'm still really anxious - nervous - and unsure about this. I don't know what to expect. It's outside of my comfort zone. But I know that it'll help. It's got to, right?

Zoloft seems to be working well enough. As well as expected.

Still.. I kiss the image of my son every morning. I have so much love for him, and it's just a matter of time until we can hold him. My Henry. But I also have so much fear and anxiety.. I just need to concentrate on savoring every moment. Live every moment, for him.

Talk it out & 3D Imaging

I feel like I'm finally able to move forward, and not be afraid.

I met with a physician who has had a very similar situation. Her daughter was diagnosed with HPE, like Henry. I feel like Henry's a bit of a rarity, having both the HPE & DWS (Holoprosencephaly & Dandy Walker Syndrome) -- at least, that's what the medical journals are conveying.

I got to consult with her earlier this week. A lot of tears, but a lot of hope. I'm going to have my son for at least a little while. I'm going to make sure we enjoy every moment together, and I'm going to be the best mommy to him that time will allow.

I was so afraid of taking him home, of being forced to turn our home into a hospice environment. After talking to Dr. Keller, I feel so much relief. It's going to be okay, really. It's going to hurt like hell, and we're going to mourn for the rest of our lives, but we'll be okay. We'll adjust to a new normal eventually.

I'm so blessed to have the resources that are available to me.

After meeting with the doctor, I came back to my 'home' clinic. We were giving a Girl Scout troupe a tour -- and I was the guinea pig for ultrasound. It was a wonderful experience - the girls asked so many adorable questions! And then, my tech started showing the girls my son with the 3D.

He's so beautiful. I just can't believe how gorgeous he is. He looks so perfect. I got a ton of pictures, but this is the best -

This is at 28 weeks. He looks a lot like his sister when she was born! I'm so amazed at how beautiful he is. It's a reminder that, while he is going to be with us for a short time, he will be with us. He's my boy - my son! - and I love him. I've started taking my prenatals again. It's been hard to take them since the diagnosis. I feel like I need to make my body as healthy as possible, so I can bounce right back from delivery and take him in my arms immediately.