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.