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.