Mother’s Day

There is some sort of irony, or divine intervention, that Julia’s birthday happened to fall on Mother’s Day and that it happened to be the first Mother’s Day that I could celebrate openly.

Imagine this: Julia would have turned 4 today. She would be a Sunbeam this year, and so she would have gotten to walk up to the front of the chapel and sing Mother’s Day songs with the other primary children. The cake that we ate at dinner to celebrate Mother’s Day would have had four fun candles in it and what a perfect way to celebrate MY day by enjoying the blessing that made me a Mother in the first place.

Except that is not reality. That perfect beautiful scenario didn’t happen because … well, because it didn’t.  BUT that didn’t make today any less perfect.

I became a Mother four years ago, but today I got to openly celebrate because I have been blessed with the most amazing miracle.

Imagine this: Another mother loved her daughter so much she picked out someone else to raise her. She entrusted to my care the most precious thing in the world: a little soul to teach and train and love. So today on Mother’s Day I walked the halls with a sleepy, cranky, baby who will someday get to sing those Mother’s Day songs, and we did eat cake (though she had mashed potatoes) and we were happy.

I was even lucky enough to get to spend today with my own wonderful mother who made my favorite dinner. We picked asparagus, cooked dinner, did the dishes, and played with baby kitties.

It really was a most wonderful day!

 

In fact, I think that the baby kitties were the only ones who didn’t have too great of a day today.

Two Years

I’m a bit behind on updating about Julia’s second birthday.  It’s not that I forgot – is such a thing even possible? – it’s that I am not quite sure how to say what I want to say.
I feel like I am so much different than I was two years ago. I can’t even tell you how I’m different either. More serious? Maybe. More alive? Maybe that too. And this birthday has been a strange thing to experience. It wasn’t as heart breaking as I thought it would be, and it was much more special than I anticipated.
I spent the day on a fishing field trip with my students. It was busy and hectic, which kept my mind occupied. When I was finally alone, sunburnt and tired, I had a good cry in my classroom before I went home. That evening both of our families met at the house. We went to the cemetery where we dropped off flowers, then went to the River Rock Grill for dinner. It was nice to see everyone and to spend time visiting. All in all it was a good day.
I think about Julia every single day- no exaggeration. She is on the tip of my tongue and the forefront of my thoughts in every situation at every moment.  When I walk into the family room I think, “If she were here there would be toys on the floor,” and when I walk into a restaurant I think, “If she were here I would need to ask for a booster seat.” It’s always just a passing thought; it lasts no longer than a second. I’ve gotten used to it, and my mind jumps back to reality almost instantly.
I don’t cry nearly as often as I used to, other than last week it has been several months since I had a good Julia-cry. However, I doubt that I will ever stop crying completely. Sometimes that extra surge of emotion sneaks up on me when I least expect it. Strangely, it is usually at times that should be happy. Happy things make me think of Julia and then that makes me cry. Is that weird?
This all sounds so sad. I knew it probably wasn’t going to come out quite right. I’m happy. I’m very happy with everything in my life. I don’t want anyone to get the idea that I am mopey or sad all of the time. I really am not. A little bit haunted maybe, but it is a ghost that I have no desire to rid myself of. So, two years after the birth and death of my beautiful daughter, I feel that I am healing and improving every day. I’ll never forget her, but I am getting ready to move on with my life.
Hopefully there will be a blog about that in the near future!

Thank You Notes

It was one year ago today that Jacob and I lost our only child to a severe birth defect. During the last twelve months we have gone through the grieving process and Jake’s deployment overseas. It has been emotionally draining- sometimes it still is. But there have been people in our lives who have been a blessing that we can not measure. I have never been good at writing thank you notes. There are many people who deserve a hand written letter of gratitude, but a public online acknowledgement will probably have to do instead.

• Mom and Dad Fiala – Okay, words can’t ever express the feelings of a daughter to her parents so just know that I love you so much. Really I am speechless and overwhelmed when I think of everything you have done for me.
• Mom and Dad Schwabedissen – I have the best in-laws in the entire world. I am so grateful that I married into a family where commitment, love, and support are such a big part of your daily lives. I have never felt like an outsider or been afraid to call when I needed something. You are wonderful people and I thank you for letting me marry your son and be a part of your family.
• Sara (and Nate) – I’m so lucky to have found a bosom friend that understands me so well. I’m also lucky that her husband is so understanding and will let me steal her away for a good cry or a good laugh at even some of the strangest hours of the day or night.
• Alex – We have always been close, but I feel that in this last year we have become even closer.  I can’t say that I would have always been at church if it hadn’t been for your support and physical presence in the meetings with me. My testimony stayed strong and I credit that to you and your family who gave me a reason to keep attending.
• Amanda and T.J. – Thank you for giving me a shoulder to cry on (or punch, respectively) and then for always turning my tears into laughter. Your friendship has kept me going on days when I didn’t think that I had it in me to take even another step. 
• O’Leary Staff – Thank you for the monetary donations and the love and prayers you shared on my behalf. The meals and cards were wonderful.  I am grateful that I work with such a dedicated group of individuals who really care about their coworkers and their students.
• Garrett- Thank you for stepping in and taking care of the house and helping me while Jacob is away. You’ve saved me from untold amounts of stress with your unwavering commitment. Jacob owes you many hours of lost gaming time, which I’m sure he’ll be glad to pay.

I know that there are many wonderful people who have helped, but I can’t possibly write you all long notes now. I have tried to make lists of people who have been helpful in different ways and I just can’t do it. I run the risk of leaving off an important somebody.  Please just know that if you prayed for us, helped us, even smiled to us and tried in anyway to brighten our days, we felt your love and you strengthened us, and for that we thank you! We couldn’t have gotten through this year without you!

Chapter 18: One Year

Dear Julia,

I am always amazed at the difference that one year can make.  I frequently stop and ask myself, “Where was I one year from today?” 

I’ve done that a lot this past year as I’ve hit a lot of milestones. It’s been one year since my appointments to the fertility doctor. It’s been one year since my positive pregnancy test – we were so excited. It’s been one year since I went shopping for maternity clothes. It’s been one year since I first felt you kicking.  It’s been one year since the ultrasound and the day we got your diagnosis of congenital hydrocephalus. And now, dear Julia, it has been one year since you were born. One year ago today- I was having a C-section and you were taking your first breath.

Many of those little milestones went unmentioned, but they never went unnoticed. I felt and remembered every single one of them in my heart.  This is one milestone that will be neither unmentioned or unnoticed. For I want the world to know that I still think about you every day. I look at other little babies- one born a year ago this week, and one born around the time of your actual due date in July. I think about an alternate reality in which you are learning to eat solid foods, sit up by yourself, take your first steps, and say your first words just like those other babies I see. None of those things happened for us like they did for those other families. We had different kinds of milestones this year.

• There was the first Sunday I went back to church (hard enough on its own) but then also had to sit through a baby blessing. I sure was grateful that your daddy had given you a name and a blessing. I was also grateful that I was surrounded by family that day.
• There was the day in June that I had a panic attack in Target because I passed a woman with a baby in her cart and I suddenly couldn’t breathe. I ducked behind the first rack of clothes I could find to hide my sobbing from other shoppers. Too bad I had to walk past the baby department to get out of the store.
• There was the day in September that your daddy flew out of the Twin Falls Airport headed to Mississippi and then on to Baghdad, Iraq.  That was a milestone because my life went into limbo and hasn’t felt “right” since. It was also a milestone because even though I had thought I was strong then, I learned I had new levels of strength I didn’t even know about. 
• There was the week in December that I first held a baby that wasn’t you- and didn’t even cry.  (Sweet little Anara, thank you for snuggling.)
• There was the day in March that I sat in Sacrament meeting and listened to a baby blessing and didn’t feel jealousy or anger. That was a turning point for me. It was the week that I realized that I could be happy for other people even if I wasn’t happy for myself. I think that is a sure sign of healing.

Dear Baby Julia, you are a precious darling little girl. In three days time we will be recognizing another one year milestone, but not today. Today I simply want to recognize you and your brief life with some pictures that I haven’t posted before.

Baby bump!

More baby bump!

Blogging- because that’s what I do when I’m stressed.

Getting cleaned up and getting help breathing. It’s a hard thing to do by yourself when you’re so little.

That bili light for your jaundice sure was bright. You had to wear the silliest little eye covers.

We loved to touch you. In fact, we could barely keep our hands off of you.

Grandparents- you’re the first granddaughter on both sides, you know. They were right there with all of us the whole time.

There were so many wires and tubes everywhere that holding you was challenging. Luckily we had very skilled nurses and therapists to help.

P.S. I know I’m not supposed to post things that will upset Daddy, but let’s be honest. He’s probably a little upset today anyway. Maybe some of these pictures will remind him of how happy we were one year ago today. If anything, I hope that they remind him of how much I love him. Because I do love him -  very much.

And I love you baby girl. Happy 1st Birthday!

 

(Pictures by Sara Bliss, mostly).

Chapter 17: Six Months Ago…

Dear Julia,

It has been six months since you passed away in my arms.  I can’t believe that it has already been that long.  The joy of having given birth to you and the pain of losing you is still almost as fresh as it was six months ago.  Though I cherish that joy, every day I have to  swallow down the pain that I feel and the tears that I cry.   Some people may even think that I have moved on, or that I have healed.  They would be wrong.  I have learned to deal with the pain in my heart, I compartmentalize it and lock it up in a box.  Sometimes the lock breaks at odd moments when I’m teaching school or sitting on an airplane, and luckily that doesn’t happen often, but you are on my mind no matter where I am or what I am doing. 

Life has continued to move on in the last six months. A lot has changed around here and yet sometimes it feels as though nothing has changed at all.  We got a puppy to keep us busy so we wouldn’t mope around the house. He has destroyed or attempted to destroy most of the furniture. School started and I went back to the job that I enjoy. Your daddy is busy working at a job that he loves too.  We think about you all the time, and though we don’t talk about you often, we can intuitively know when the other person in thinking about you. I’m sure you know too.  I visit your gravesite several times a week.  You got a new cousin this week, she is almost exactly six months younger than you.  I hope that in the eternities you will be the best of friends, as I know you would have been in life.  We have celebrated birthdays and holidays and the changes in the season. While on the surface life seems full, I am constantly plagued by the feeling that something is missing and I know that something is you. I am learning to focus on the joys of life and it is getting easier to fake happiness, which I guess means that maybe I’m not faking as much as I used to. I have also become a little savvier in how to protect myself. I avoid ward parties and relief society events where people bring babies.  I am acutely aware of the baby section in stores, and I have learned the easiest ways to shop without going near them.

I didn’t mean for this to be a sad letter, sweetheart. I didn’t mean to cry while writing it either. If I could hold you in my arms right now I would tell you how much I love you. I would cover you in kisses and hold you tightly to my chest. I want you to know that I love you more than almost anything in the world, besides your daddy of course. He is my strength. We both love you so much, I can’t find the words to express our love.  Please, please know this. Know that you are cherished, and will be cherished forever.

With love,

Mom

Chapter 16: A Headstone and Final Resting Place

Julia’s headstone has finally arrived.  There were several delays and miscommunications, but it has finally made it! Jacob and I went to the cemetery today to lay some flowers by the little, temporary marker but when we got there we were surprised to find a large, beautiful slab of granite inscribed with a sweet picture of Christ cuddling an infant to His chest. It was exactly like we had pictured it. I cried when I saw the headstone.  It makes everything seem so final, so absolute. Looking at her beautiful name with the two little dates beneath it, brought back all of the memories of that painful, special week. 

         

I think it will be easier to visit the cemetery now that I have a place to actually visit. I’ve always felt silly standing there looking at the tiny temporary plaque and plastic flowers my sisters left there.   I have walked to the cemetery several times a week all summer long but I never stay long at Julia’s plot.  The Twin Falls Cemetery is a beautiful, peaceful place and Sammy and I have spent many hours walking around reading the names on the headstones and imagining stories for the people who are resting there. (Well, I doubt Sammy makes up stories, he’s more interested in chewing on the flowers).  

 

   

May you rest in peace, little one, until I can hold you and care for you again.

Chapter 15: Rain

I sat down to write about the rain, and how it was reflective of my mood today. Rain is usually associated with sadness and tears, country music songs crooning something about tears from angels in heaven and so on. It would have been a perfect comparison. But by the time I got my laptop set up, cozied up in my armchair, and began to type, the rain had stopped. The sun was shining on the puddles, and there were three little birds splashing in the gutter, looking quite happy. In fact, the world looks clean and bright right now; the grasses are green and growing, and the flowers and trees are looking perfectly delighted with themselves. It’s hard to write about rain when the sun is shining.

And come to think on it, that is more reflective of my moods this week than the rain would have been. I have sunny moments and rainy moments. But following right behind every rainy moment is another sunny moment. Each day is a different experience. Although I had two good days in a row this week. I bought and planted lots of flowers on my front porch, talked to good friends, and went out to lunch and had a really nice time. I was so surprised that I almost didn’t believe it when I went to bed last night realizing I hadn’t cried in almost 36 hours. Then this morning came along and one thing after another has set me to tears.

The deal with tears, though, is that I enjoy them. Crying makes me feel better. After every good cry I am strong again, ready to take on the world, at least for a moment. And it’s okay to cry. Like the rain that helps bring life to our desert, tears keep me from becoming dry and numb. Sometimes I become afraid that I am closing my heart, building a barrier to protect myself. That barrier shuts out not only the angry, hurt feelings, but also the people I love and who care about me. It also shuts out Julia. Tears wash away that barrier, opening me up to the knowledge that I am loved and that I will be okay, someday. Sure, that barrier keeps me from being hurt, but it also keeps me from being truly happy.

I can’t believe how blue the sky has become, even in the last half hour, it almost looks like summer. But I can also see another big, black rain cloud building up on the horizon. Well, as short lived as the sunshine will be, its comforting to know that the rain won’t last forever either. . .

Chapter 14: I Buried My Baby

I buried my baby today. It was one of the most heart wrenching steps of this ordeal. She was laid out in a white blessing gown sewn especially for a micro-preemie, and she had a little white head band on her head. Her beautiful little face was at peace. She almost had a smile on her lips. Her hands laid gently to her side. She was beautiful. We sat there, Jake and I, with our mothers on either side of us, in front of a tiny, sweet white casket. The sun was warm, the breeze was gentle, and I felt a beautiful peace in my heart. Still I cried. Alot. I couldn't help myself. My little tiny baby is gone. I know this. I know her soul is in Heaven. And yet, her sweet angelic little face was sleeping so peacefully in front of me and I cried. I didn't cry for Julia. She feels no pain and the life she would have had, even if she had lived, would have never been a life worth living. I cried for myself. I cried for my husband. I cried because I could and because I wanted to. I wanted a baby so badly and the Lord gave me a perfect soul to love forever. But my arms were empty and the casket was full, and life didn't seem fair at that moment. I know the body in that casket was simply a shell, used to house her beautiful spirit while she was here on earth. Her spirit was there, in our hearts, where it will remain forever. Still, no mother should have to bury her children. No father should have to dedicate his child's grave. Jake, by the way, did a perfect job. He is strong and steady, even when I know he doesn't always want to be strong and steady. He is my strength.

After the service we came back to the house where we were loved and hugged by countless numbers of people. I will never again feel alone or unnoticed. I was overwhelmed by the scores of family and friends who came to show their support. Thank you. To have come home to an empty house would have been a burden we could not have borne. But to come home to a house full of love, and some laughter, and warm, comforting embraces, made this day bearable. The Relief Society took care of most of the refreshments and they did a wonderful job. Everyone's contributions were wonderful. Just as there are no words of comfort to offer to Jacob and I at this time except "I love you," there are no words to express my gratitude to my family and friends except "thank you," and "we love you."

It will be time now to find our new "normal" as one friend said today. Tomorrow we will have to come to the realization that there are no more preparations to make, there are no important decisions to occupy our minds. Now we can begin to heal, to move forward with our lives. Julia is a beautiful part of our lives, and we will carry her forward with us, but now we must balance our pain and our grief, with life in the real world. We must tuck her away in our hearts as we pick up our hobbies, return to work (Jacob, not me -- it's summer time for me), continue the yard work, and strengthen ourselves for the next challenge life springs on us. Please continue to include us in your prayers. It is the source of our strength and with your love we will make it.

Chapter 13: A Day at a Time

Everyone copes with loss and death differently. There are no rules to follow or steps to take. I didn't know what to expect of myself or of Jacob. Neither of us have ever experienced anything as powerful as the death of a child and neither of us knew what we would feel or how we would cope. I feel as though I am in a protective bubble, safe from the pain and sorrow that I know I should be feeling. Maybe some people would call it shock, others might call it denial, but to me it feels like strength; the strength to get up and start each day as though it were a regular day, the strength to take care of my aching post-surgery body, the strength to joke and laugh with my husband, the strength to plan a service for my baby girl. I never thought I would have the strength to sit across a table from a mortician and discuss funeral arrangements as though it were an everyday occurrence. Maybe next week, when I no longer need this strength, it will leave me. However, I know that this strength isn't coming from me. This is a powerful gift from my Father in Heaven. It is an answer to the many prayers offered in our behalf. He may have taken little Julia home to be with him, but he has given me the strength to accept His will. He has blessed us with an overwhelming feeling of love from friends and family members, as well as an abundance of love for each other. I have never felt closer to Jake than I have this week. We each stay busy with different activities to keep ourselves distracted, but we always make time for each other. Jacob has taken care of my stitches, he lifts me into the pickup when we travel, he monitors my medications to make sure I take them, and basically spends his time being the best nurse a person could ask for. I am very lucky.

I am also lucky to have the Gospel in my life. I know, not just believe but KNOW, that my little girl is with her Father in Heaven. I also know that she is part of my eternal family forever. Nothing will ever be able to separate us, especially not death. Her death was not good-bye. It was simply a "until we meet again". She was a very special little girl. I wish everyone could have had the chance to meet her and to feel her amazing spirit. I know I am a biased source, but she was too good for this world. I'm proud to be the mother of such a wonderful person and I can not wait to be with her again. She is my pride and joy, despite her short mortal life.

To honor her sweet life, we have planned a graveside service for immediate family only on Wednesday afternoon. We know that many friends would like to come and show their support, but we feel that her service should be as small and simple as her life was. However, we have also planned an open house for later Wednesday afternoon, and it is open to anyone who is interested in coming. It will be from 3:00 to 5:00 at our house. I am not going to post my address on the internet for obvious reasons, however if someone would like to come and does not know where we live, they can call or e-mail myself or any members of our family, who will gladly give you directions. If you can not reach a member of the family please leave a comment with your e-mail address and I will try to get back to you by Wednesday morning.

Chapter 12: Julia, We Love You

Julia Abigail Schwabedissen lived a beautiful life for exactly 60 hours. At 1:45 a.m. Friday 14 May, she went back home to her Heavenly Father.

She was born with a very tiny body and very big problems, but there has never been a little girl more loved. Before she passed away, her father and grandfathers gave her a name and a beautiful blessing with the power of the priesthood.

She was snuggled, cuddled, kissed, and loved on for the last few hours of her life. She peacefully fell asleep in the arms of both her mommy and daddy and surrounded by family members who have gone before her.

She is Daddy's guardian angel and Mommy's best friend. She feels no pain and she is at peace. So are her parents. They know that her life was as perfect as it could be, and they are grateful that she never suffered a day in her life.

Julia Abigail-- my baby-- I love you.

Chapter 11: She's HERE!!

After 16 hours of labor (which Mom didn't feel because of a WONDERFUL invention called an epidural) but being unable to dialate past a 4, Julia Abigail Schwabedissen came into this world via c-section. She was born at 1:45 p.m.

She weighs 3 lbs, 12 oz. She measures 16 inches long.

She currently resides in the Newborn Intensive Care Unit. She is hooked up to a ventilator which helps her breathe, though at last check she needs very little assistance.

She has ticklish feet and long fingers and toes. When tickled she spreads them all wide apart. She enjoys stretching out and kicking her feet. She can be visited by her parents at any hour of the day, though they are both getting ready to sleep for the first time in over 24 hours.

Chapter 10: At the Hospital

Well, we're here at the St. Luke's Labor and Delivery wing. I'm all hooked up to an IV, wearing a very flattering blue hospital gown, a baby heart monitor, a contraction monitor, and basically enjoying the comfort of a night in the hospital. Jake has a nice little bed/couch to sleep on and we are settling in for the night. Today was a long and stressful day and tomorrow will prove to be much more so.

Here are some of the things that were discussed today.

• Since Julia is currently in the birthing position (head down) we are going to try for a vaginal delivery. If my uterus is smarter than it is being given credit for and it can not be tricked into thinking that we are 40 weeks along, then we will eventually give in and do a C-section.
• Tonight they will give me medicine to soften my cervix and tomorrow morning they will break my water and give me pitocin to start labor.
• Julia will be born one way or another. Dr. Lee assured us that he has never had a patient that stayed pregnant forever. Good thing -- we were worried. LOL
• Dr. Chirney, the neurosurgeon, looked at the ultrasounds and believes he can do a shunt operation as early as one day after she is born.
• There are many risks that come with surgery on a baby born so early: infections, tearing of the skin, inability to heal, incorrect growth of the skull bones, subderal hematoma, just to name a few.
• One of the NICU doctors came to visit us. He does not believe that 30 weeks will be too little to survive in the NICU.

Those are the facts. Unfortunately we are still dealing with an uncertain future. Dr. Chirney, the neurosurgeon, believes that she has very little brain matter. He will know more after he does a shunt surgery to relieve the pressure from her brain. Jake and I will have to decide how far we are willing to go to keep her. The doctors do not seem worried about keeping her alive, but they do seem concerned that we may have a baby with no ability to function as a person. So we must ask ourselves the following questions:

• Are we physically capable of caring for a vegetable: someone who may be ten, fifteen, twenty years old and still in diapers, unable to feed herself, dress herself, or recognize her own name?
• Is it morally right to do everything we can to save her, if her life is going to be like that?
• At what point do we say "enough is enough"?
• How do we live with the decisions that we make in the next few weeks?

We were able to discuss this by ourselves for about a half an hour today and the conclusion that we came to is that we are not capable of making that decision alone. We do not know the future, we do not know what is possible. If God gave her this body, if she was born in this day and age with the technology currently available to us, and if she survives through all the ups and downs of her first few months of life, then we must believe that surely she will have a quality of life that is better than is being predicted now. I can not, and will not, believe that Julia will suffer a long and terrible life. I personally believe that with all the things that could go wrong in the next few days, if she does not make it, then she was not meant to make it. I don't think that God would have given her to Jacob and I if He didn't think we would make the best possible choices we could make with the information given to us. So, we will go forward with the first shunt surgery. It will be a temporary shunt, until she is a few months older, then she will be given a permanent shunt. After the temporary shunt we will have to reexamine our thoughts and feelings with the added benefit of having seen exactly how much brain matter she has. I can't say that we'll be able to make a better decision then, but I have to hope. We also have to hope that Dr. Chirney is wrong. If she has more brain matter than he thinks, the outlook could be more positive.

I am no longer saddened by the thought of a baby with mental disorders. I have already mourned the loss of my perfect baby. Now I must face the realities of a non-perfect baby. Physical handicaps can be accommodated- anything from learning sign language, getting a seeing eye dog, or buying an electric wheelchair are all possible adaptations to physical issues. Learning disorders are more complicated because it is impossible to know to what extent they might be. However, I am willing to deal with that too. I am being selfish. I am willing to raise her no matter what her life would be like. Basically, I find myself thinking that I will do anything to not have to let her go. Jake is less selfish than I am. He worries more about her quality of life, and he knows that despite my optimism neither of us are trained care takers. We may not be able to care for her in the ways that she needs. Luckily, we have been sealed in the temple as a family for time and all eternity. So no matter what happens we will be able to raise her, hold her, and really get to know her in the next life, no matter how brief or how limited our abilities here in this life.

I'd better go to bed now. I'll be woken up in about two hours so that they can check on me anyway. I guess I'd better get as much sleep as I can. Tomorrow is going to be a big day!

Chapter 9: Reflections

Since I'm going to be a mom in about two days, I've been doing a lot of reflecting back over the last seven months. I've posted a few pictures here to share while I reflect. None of the pictures show the hydrocephalus. They are only the pictures that are fun to ooh and ahh over.

6 weeks along! It's official! The Idaho Reproductive Clinic told us that we're finally pregnant! We were lucky because we only needed one month of treatments there.

It's time to find out if we're having a boy or a girl! I like this picture because we can see an arm and her face. (I think she has Jake's bone structure.) At 22 weeks, we were right on schedule with our appointments and everything looked fine -- to Jake and I. The doctors noticed the enlarged ventricles and sent us straight up to the specialists in Boise.

This picture is another 22 weeks picture. I call it The Thinker because of the way she is resting her elbow on her knee. Deep thoughts I'm sure.

This picture was taken in Boise around 25 weeks. The doctors told us that she was in breech position, meaning her head was under my ribs and her bottom was pointing downwards. I like this picture because it proves how it was possible to be kicked up under the ribs and down in the pelvic area at the same time. That is her foot beside her nose. She sure is flexible!

These are the latest ultrasound pictures from last Monday. I specifically asked for the picture of the foot because I wanted to know which limb had been repeatedly jamming me in the same exact spot for the entire two hour drive to Boise. If we had been listening to music, I would have assumed she was keeping beat with her foot, the movement was that regular.

And finally, my sister-in-law Sara came down from Montana last weekend to take some maternity pictures. We had a lot of fun trying to stay warm in the crazy weather down in Rock Creek park. Here is the first of the pictures she has sent me.

As we prepare ourselves for what is sure to be the most difficult week of our lives, I wanted to take a minute to thank everyone who has been so supportive the last two months. We have felt very loved. In my last blog, Crystal commented about leaving us messages. (Thanks Crystal) Please do! We will update as often as we can, but I can't promise that will be as often as you would like. We know you care and we want to keep you informed. Don't be offended if you don't hear from us. We'll do our best. In the meantime, please leave us comments if you can. It's amazing how just a few words from a friend can brighten our days!

Happy Mothers Day!!

Chapter 8: A Relief from the Waiting Game

Two weeks have gone by since our last appointment. There has been nothing new in the pregnancy to report during those two weeks. Hydrocephalus is interesting that way, it can be so big and scary, but at the same time the pregnancy evolves as usual, with very little of interest to report. To help us pass the time my sister-in-law Sara and my nephew Zsolt came to stay with us for a few days. That was lots of fun.

Our appointment today was a bit of a relief. The news was still bad, it may never be good, but I'm getting used to that. Now I am just relieved when there is news, because the waiting game has been so hard to bear. Here is what we learned:

• Julia's organs are all looking great; her heart was beating around 160 beats a minute, her kidneys and stomach all appeared to be functioning.
• The technician took a cute picture of her face and foot for us.
• Her head is now about 38 weeks in size. That is 9 weeks bigger than it should be.
• Our next appointment is next Monday, a week from today.
• If she is head down and her head measures 40-41 weeks, the doctor's will induce me so I can deliver vaginally.
• If she is breech or transverse (lying side to side), or if her head is larger than 41 weeks the doctors will schedule me for a C-section on Tuesday morning.
• To increase the size of her lungs, I got a steroid shot, and will get another one tomorrow.
• The pediatric neurosurgeon will look at her the day after she is born, to assess the pros and cons of a shunt operation.

In summary: we are preparing to deliver little Julia Abigail next Tuesday, May 11. She will be 30 weeks and 5 days "old". She will weigh close to 3 lbs. She may or may not undergo brain surgery by next Thursday.

So why am I relieved? Our prayers will be answered one way or another next week. Either she is strong enough to survive this or she is not. Either she will make it or she will not. I have only one more week of being kicked in the bladder, losing my balance, getting stuck in chairs, and not being able to see my knees. (If this pregnancy had gone full-term, I may have discovered what a wimp I am at being pregnant.) I have one more week to treasure every movement and every hiccup. I may only have one more week with my little Julia and I do intend to treasure that time. I've come a long ways in the last seven weeks. From a full on emotional break down, to praying that God would just take her now, to refusing to give her up, to being able to say "Thy will be done," this has been a rollercoaster ride of emotions. There are several more loopty-loops up ahead, (and a few completely different roller-coasters to ride) but at least I know there is an end in sight. And that is a huge relief!

As an end note, the scripture from Joshua 1:9 comes to mind. This scripture has been the focus of the Youth Programs at church. "Be strong and of good courage, be not afraid, neither be thou dismayed for the Lord thy God is with thee, whithersoever thou goest."

Chapter 7: The Writing on the Wall

We had another appointment in Boise yesterday afternoon and something felt wrong all morning. I didn't want to get out of bed, then I couldn't get out of the shower. I was so nervous that I lost my breakfast before we left. Nothing seemed to feel right.

We arrived about 20 minutes early and we got right in. They did another ultrasound, which is becoming routine. They measured the size of her head and other body parts like the length of her legs and arms, the size of her stomach. They listened to the heart and checked on her organs. Everything is measured using actual measurements but those are converted into days and weeks. For example, yesterday we were at 27 weeks, 2 days gestation. Her overall size measured 27 weeks 5 days. That's not too far off from normal. However, her head which had been measuring about 2.5 weeks further along at our last appointment is now 5 weeks ahead of her body. Even though she is only 27 weeks, her head is at 32 weeks. Her head is expanding due to the increase in fluid in the ventricles. When her head is at 40 weeks (full term) they will deliver her via c-section no matter what stage her body is at.

So what is the writing on the wall? Well, if in a two week span of time her head can increase from 27 weeks to 32 weeks, then two weeks from now it could do the same thing. It could, hypothetically, be 37-38 weeks along. We are quite likely looking at a May delivery -- two months short of her actual due date. Her body, her lungs to be specific, will only be 29 maybe 30 weeks old. Can she survive? Theoretically. Can she survive brain surgery? No one knows. It's impossible to say what will happen. The doctors won't attempt to give us an answer, and I don't dare begin to explain how many different scenarios we could encounter.

So what next? Well, we can continue to pray for a miracle, though the miracle is not that the hydrocephalus goes away but that she is strong enough to survive after birth. We will pack a hospital bag to our next appointment just in case they don't let us come home. If we are lucky, they will give us a week to take steroids to build up her lungs. I have stopped really hoping that we will be lucky. In fact, today has been one of the darker days in this ordeal. I find this entire thing to be one continual round of cruel and unusual punishment. I am having to give up the false reality that I built around me and face the painful truth. "My thoughts are not your thoughts, neither are your ways my ways, saith the Lord." Easier said than done.

Chapter 6: How Am I?

How are you? What a powerful and loaded question this is.  I’d never really thought about it until recently.  Tonight its on my mind so I’m going to write down a few of my thoughts and questions.

I’ve never started a conversation without asking or being asked, “How are you?”  Most people will automatically respond by saying “good,” or “fine.”  (Quick grammar lesson: if you say ‘good’ you are implying that you are well-behaved; if you say ‘well’ you are implying that you are healthy.)  Does it ever drive you nuts when you’re in a hurry and out of habit you ask someone how they’re doing and they launch into a long story about all of their problems? You’d like to sit and listen (sometimes) but you just don’t have the time and you don’t know how to get away from them?  How many times do we ask that question and really want an honest answer? Also, how many times are we asked that question and we give an honest answer? 

I get asked how I am doing 15 times a day, at least. My answer varies depending with whom I am speaking.  Most of the time I just say I’m “fine”, because most of the time I am. (FINE of course being “Freaked out, Insecure, Neurotic, and Emotional.” Name that movie). Actually, to me “fine” means I am here. I am doing whatever it is that I am supposed to be doing, I am not thinking, I am not thriving, I am not excelling. I am simply here and since being here is a fairly big accomplishment most days, “fine” is all you’re going to get from me. Please don’t expect any more.  I don’t think that is too uncommon, really. Haven’t you ever said the same?

In actuality, I am full of so many different emotions and thoughts, from the highest highs to the lowest lows, that its hard for me to really understand how I am let alone explain it to someone else. How am I? Well I am…

Some moments I am absolutely elated. I’m going to be a mom! This happens whenever Julia moves around. I am overpoweringly in love with her. I talk to her and caress her, and try to tell her how much I love her. I am grateful for all of the wonderful people in my life: my family, my friends, my co-workers, the strangers who read this blog and pray for me. I feel that I am spiritually enlightened, knowing that I have the gift of the Holy Ghost and being able to recognize Christ’s atonement every day. I am hopeful when I think of the miracles that could happen.  I am happy when I realize that I am laughing at a joke, or my silly cat, or whatever. Laughter is wonderful.  I am relieved when I realize that I am not feeling sad.  Other moments I am incredibly selfish when I see small children with their parents. How dare those parents have what I want to have? I am kind of surprised by how often I feel anger, an emotion I used to feel very rarely. I am angry at myself for being selfish. I am angry at the doctors for giving me bad news, even though its not their fault. I am mad at myself and at the doctors whenever I begin to not enjoy my pregnancy. How dare they not let me enjoy these precious months by talking about the future?! I am hurt when people belittle my concerns and worries. I am sorry for the ignorant people who say those things. I am scared when I realize I don’t know what the future has in store for me. I am depressed when I think of burying my little girl. I am frightened when I think of bringing home a baby with disabilities. I am doubtful I could handle either of those situations and I honestly do not know which would be harder. I am stronger than I ever imagined. I am scared, I am nervous, I am tired, I am courageous, I am growing, I am absent-minded, I am distracted, I am on the verge of tears, I am surviving.

I am . . . fine.  How are you?

Chapter 5: Moving Forward

Well, we might be cruisin' for a bruisin', gluttons for punishment, and setting ourselves up for heartbreak, but we've made a few decisions. Mostly we've decided that if we're going to hope for a miracle, then we should probably prepare ourselves to receive one. Not to mention that there was just enough hope from our visit with the neurosurgeon that we have decided to move forward with faith and see what happens.

We've always heard stories of babies who were supposed to be named one thing and then when they were born they don't fit that name. Well, unless that occurs in our case we are naming her Julia Abigail Schwabedissen. From now on, instead of saying "the baby", or "our little girl" I am going to try to call her Julia.

Second, over Easter weekend Jacob set up the crib that we received in the mail the same week we first got our bad news. We weren't sure what to do with it so we put it in the nursery and closed the door. However, Jake went in and set it up last weekend. Wouldn't it be sad if IF if they could save her she didn't have a place to sleep when she came home? With very little cursing, this was the end result:


I even put the bed skirt on that I had made earlier. It's not finished yet, but so far I'm proud of what I've done. (Don't look to close at the hemline.)

Other pregnancy updates: I'm still convinced she's going to be an olympic swimmer from the way she kicks. I can tell when she's hungry because she gets super active if I don't eat on schedule. She likes to "stand" in breach position with her feet pointing downward. This makes her kicks into my pelvis extra powerful. My stomach is getting bigger too. (My belly button has even started to disappear!)

That's the update on our little story. Other than working all the time, that's pretty much it around here. Our next appointment in Boise is Monday the 19th. More to come then.

Chapter 4: If Knowledge is Power…

…then why do I feel so powerless?

 

We learned a lot at our appointments today. I know more about the brain and about hydrocephalus than I ever thought possible. We met with Dr. Lee again and we met with a pediatric neurosurgeon named Dr. Chirney.  The most important, and hardest to accept, fact that we learned today is that we are in a waiting game.  “We have to wait and see…”, “We  won’t know until…”, “We’ll know more in a few weeks…” I know that the doctor’s weren’t trying to be difficult.  They always explained why we have to wait, but that doesn’t make waiting any easier.

Dr. Lee took ultrasounds and told us that her head is still about 2 1/2 weeks ahead of where it should be.  This means that the hydrocephalus is still a huge, horrible issue, but it also means that it has grown proportionally with the rest of her.  I guess its not getting worse, but its bad enough that that doesn’t mean much.   Dr. Lee also said he will need to monitor us every few weeks to keep an eye on the measurements.  If her head begins to get bigger (proportionally), then they will have to induce labor to spare me from a C-section or a long recovery. So we wait. . .

At Dr. Chirney’s office he looked at the ultrasound pictures while we talked to his nurse.  She explained hydrocephalus again and she also explained how it is treated.  It cannot be cured. We got to look at a shunt and a model of a normal human brain to understand how they worked.  She also explained that there are two situations with congenital hydrocephalus.  The first is that the condition develops very early in the pregnancy preventing the brain from ever growing at all.  The second is that the brain develops but gets smooshed to the side.  In the case of the first, there is no hope as a brain will never develop.  In the case of the second there is much more hope, depending on how far the brain had developed before being squished.  Considering how far advanced our baby’s condition is, it is clear that the doctor’s are leaning toward the first situation, but they won’t say that because “we have to wait and see…”

Dr. Chirney seemed like a fairly nice guy.  He re-explained everything the nurse had explained.  He also talked to us about what to expect after delivery.  They won’t perform surgery immediately after delivery.  He wants to make sure that her body is stable before performing brain surgery so he may wait a day or two.  We talked about quality of life. That was mostly depressing, so I’ll skip that for now.   He can’t tell if he can save her until after she is born. . . hence the waiting . . .

So for now, we wait.  We pray and hope that she doesn’t get worse. We pray and hope that the fluid goes away. We pray and hope that she has a brain once the fluid does go away. Our next appointment is Monday, April 19th.  Until then, we wait. And after that we will wait some more.

Chapter 3: Prayers

Many wonderful people have told me that they are praying for me and for my family.  For this, I thank you.  On difficult days we have felt a strength beyond our own, a strength which could have only come as a result of all those prayers.  I have a strong testimony of the power of prayer and I am very grateful for that communication with our Heavenly Father.

Lately I have been pondering prayer.  The more I have heard people tell me they are praying for me, the more I have begun to wonder what they mean by this.  Some people are specific and tell me that they are praying for a miracle.  This, too, raises questions.   I want to share my questions with you, not because I need answers, but because I have found that by putting pen to paper – fingers to keyboard—I am able to better clear my mind and organize my thoughts.  If the following seems like random disjointed ramblings please forgive me.

First of all, what is a miracle? When people pray for a miracle will they be disappointed when our little one is not born perfect? A miracle could be anything from a miscarriage and an early release from this long ordeal to every day that I get to carry my little girl with me. Should I consider it a miracle when we get one full day, one week, or one year with our little one? Or does it have to be “the whole enchilada,” a happy, perfect baby?  I too am praying for a miracle, but I can’t help wondering what that really means.  

My second question is is it right to pray for a miracle, or is that selfishness? Sometimes when I think of miracles I wonder if I have the right to even ask for a miracle.  In the New Testament Christ raises the daughter of a Pharisee from the dead.  Christ did not call the Pharisee and his wife selfish in their desires, yet sometimes I feel selfish in mine. If the Lord has a plan for each of us, do I have the right to ask Him to allow me more time with my little girl, to care for her and to raise her?  Would He change his plans for my sake? Would answering my prayers be thwarting a bigger plan that I am not able to comprehend? Who am I to ask God to change His mind?

That brings me to the last question: what if I don’t pray for a miracle and I am supposed to? Christ gave sight to the blind, fed the multitudes on naught but fish and bread and even raised the dead. He can perform miracles, but He does not do it arbitrarily.  In the Old Testament Abraham was promised that his seed would be as numberless as the sands of the sea.  However, his faithful wife Sarah was barren and unable to bear children.  They were heartbroken and prayed faithfully for a child.  I am sure, from my own experience, that Sarah prayed in her heart every minute of every day to have a child.  They never gave up hope and I am sure that when their prayers were answered they were overjoyed!  The Lord kept his promise to Abraham but Abraham also exercised much faith in the Lord by never giving up his prayers.  We are instructed “ask and ye shall receive.”  Does this mean that if I don’t ask, then I won’t receive?  What kind of a mother would I be if I did not exercise every particle of my being in pleading for this little life?  At what point do I say, “Thy will be done”?

Part of me already knows the answers. They are probably a combination of all things;  plead for a complete miracle but be willing to accept whatever I am given, etc. But as I live this trial everyday I mostly plead for strength: the strength to get out of bed, the strength to go to school, the strength to be a support unto my family and friends.  Whatever answers you may have for the questions I have been pondering please remember to never stop praying. God, our Eternal Father, hears all prayers and answers all prayers in one way or another, of this I am sure. 

Chapter 2 -- They Told Us

Sometimes author's leave you with a cliffhanger because they know you'll come back for the rest of the story. Sometimes they leave you with a cliff hanger because they don't know where the story was going from there. I will be leaving cliff hangers because I am not yet strong enough to acknowledge what happens next. . .

The doctors in Boise were fabulous!!!!! Our wait in the waiting room was relatively short. Everyone was very nice and very informative. There wasn't a single person who made our trip there worse than it was already going to be. The technician, Susie, took lots of pictures and sent most of them home with us. Then Dr. Lee came in to review the ultrasound pictures. He was straightforward and honest. He told us a lot of bad news but this is the first time that I didn't want to hurt the messenger. I wanted to hug him for being such a good guy. Here are some of the things he told us.

He told us that on a scale of 1-10 this was a 9 in severity.
He told us that she will probably not go full term.
He told us it is better that way because she won't be able to live more than a few days if she does go full term.
He told us that even though he sounded pessimistic, the pediatric neurosurgeon was even more pessimistic and would probably not be willing to do any drastic measures to try and save her.
He told us he was very sorry.
He told us that many people would terminate at this point.
He told us we had until the fetus was at 23 weeks gestation to complete that act. (That gives us until this Friday). We told him no.
He told us not to blame ourselves.
He told us he was very sorry.

Everyone left us alone for about half an hour to digest that information. We cried and hugged each other. Then a really nice girl named Amber came in. She introduced herself as a genetic counselor. She asked us to come to her office. (It wasn't really her office though. The name plate said Heather. idk) She told us lots of interesting things too.

She told us that there are three things that cause hydrocephalus: infections, genetics, and random bad luck.
She told us that the infections (CMV and toxoplasmosis)are very, very hard to get.
She told us that genetics does not mean hereditary. Genetics means there was an extra chromosome given. Some of the most severe and well known are called Trisomy 21 (down syndrome), Trisomy 18, and Trisomy 13.
She told us that random bad luck only repeats itself on a 3-5% regularity.
She told us not to blame ourselves.
She told us she was sorry.
She told us that if we wanted to know which of the three things caused the hydrocephalus we should do an amniocentesis, a procedure which draws amniotic fluid from around the baby.
She told us she was sorry.

We went back to an ultrasound room. We met with the same nice ultrasound technician, Susie (do they have an official title, i don't know). We met Dr. Lee's nurse. I don't remember her name but I liked her immediately. She had a thick British accent and she called Jake "Love". As in "Can I get you some water, Love?" All people delivering bad news should do it in a cool British accent. It's much more pleasant to listen to. Plus, she was nice.

Dr. Lee did an amniocentesis. I closed my eyes because I didn't want to see the needle going into my belly. Jake held my hand against his face. He's such a good guy. The procedure didn't hurt too badly. I got scared when Baby Girl started kicking around though. I didn't want her to get hurt by the big needle.

Nice British nurse told us how to procede after the amnio.
She told me to stay hydrated.
She told me not to lift anything heavier than 10 pounds. (That rules out the cat, who currently weighs 13 pounds)
She told me not to do any intense exercising. (That has never been my problem).

We came home and held a family council with moms, dads, and siblings. They're such good people. I love them all. They listened to everything we had to say. They asked only a few questions. Then they told us things too.

They told us we were valiant spirits for taking this on.
They told us that we would be blessed for enduring our trials.
They told us they loved us.
They reminded us of the valiant ones who stood against Satan in heaven.
They told us we were giving this little girl a body so that she could be resurrected at the 2nd coming of Christ.
They told us of other women who are carrying babies that aren't going to make it.
They told us to enjoy feeling my belly move with life, because many women never get that experience.
They told us that Grandma Donna would come and get her and watch over her until we could have her back again.
They told us that we were an eternal family because of the covenants that we made in the temple.


The Spirit told us they were right.

Thank you for your prayers. Please keep them coming. We know we can survive this but we know we can't do it alone.