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.