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.