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IMPORTANT NOTE: I redesigned and relaunched Joy In This Journey at www.joyinthisjourney.com after our daughter Elli died. You will find posts from October 2008 to the present there. Please come over and read the new journey there.

Mar 27, 2007

6 Months Later

We have been living in our house for 6 months now. The move was big and we knew things would get lost. We just didn't expect them to stay lost for this long.

We moved several times before we bought our first house -- at least once a year. But those moves were with two adults and, for the last two, one very small child. This time around, we had five people, each with their own bed, dresser, and ton of gear, plus more furniture. It was a big job, and one I pray that we don't have to do again until the kids have moved out on their own!

We were very careful, when disassembling furniture, to put all the pieces and hardware into labeled ziplok bags.

Elli has a hospital bed -- the head and foot both raise and lower with hand cranks, and both sides of the bed have bed-length rails that you can raise and lower like the side of a crib.
So her bed has a LOT of hardware. I remember specifically labeling the bag for her hardware.

Then it disappeared. For 6 months.

We've had her bed in the corner of her room, with a dresser at the foot and a bookcase on the remaining open side, to hold all the sides up. For 6 months.

Yesterday, the warm weather prompted the kids to ask where the swings went for the swingset. We had taken them down for the winter. I started searching the garage, hoping that I would get lucky and find them within reach without climbing the creaky, rickety, rather scary ladder to the attic.

Under a stack of painting supplies, I spotted the bedskirt we had put on Elli's bed. I pulled everything out, and grabbed a bright orange booklet folded in half and held there with a hair elastic. Tucked inside was the ziplok bag with Elli's bed hardware!

We are both sure we've searched that box before. We can only guess that we didn't recognize the booklet (the manual for the bed) because we were looking for a clear plastic bag.

Mar 26, 2007

It Is Finished!!!

Big Boy 's birthday quilt, that is. It's only 6 months late. Almost to the day, actually.


I let him use it half-quilted, with safety pins still in it, all winter. He finally asked me to please take the pins out. Then I got a gift certificate to a local store, which I used to take a class in binding last Saturday. That gave me a deadline to finish the quilting and actually get the project done!

Happy Birthday, Anna

Anna IS our Curious George


Mmmmm... Mamaw makes super birthday cake!


Mamaw is excited to have made her last Dora cake



They fought so much over Sam's Magna Doodle that I recommended
getting Anna her own. She loves it!



The perfect dog - has an "off" button

Mar 23, 2007

Special Olympics

Sometime during the first few weeks of school, Elli's special education teacher sent home information about a Special Olympics event they wanted to bring their young elementary students to in the spring. I had no hesitation -- I used to volunteer at the regional Special Olympics event at my college and knew that the kids who participated loved every minute of it.

Elli loved the medal ceremony. She won third place on her team and really enjoyed showing her classmates the medal when she got back to school.

The event was a basketball clinic, in which students visited three different stations. They tried out different basketball skills, such as throwing into the hoop and passing the ball. Each school kept points and at the end, they handed out medals to each school's group.

You can barely see her, but Elli's got her game face on as she makes a basket.

Elli thoroughly enjoyed herself. Her aid wrote that she pretended to be shy until the principal at the 2nd-3rd grade got her laughing.

Mr. Messer brings Elli out of her shy act.

Apparently she really hit it off with the team from that school, which makes me feel much more at ease about sending her on in the fall (we've been debating repeating 1st grade).

So this is a big THANK YOU to those who makes events like this happen for kids with all kinds of disabilities. It was definitely a highlight for the year!

Mar 21, 2007

When Does Life End?

I’m presenting at a bioethics forum at our children’s hospital this month. It’s an amazing opportunity because it’s very official – attendees earn continuing education credit from this class! Our topic is whether there should be limits to parental decision-making, particularly when a hospital promotes family-centered care. My segment of the forum addresses how to include families in difficult decisions, not on end-of-life issues themselves. But it has gotten me thinking about ethics in health care. Then I read this article on Google New’s headlines this week: Organ Donation Trend Brings Worries

To sum up, the article states that many hospitals have begun a new procedure for harvesting donated organs, called “Donation after cardiac death” or DCD.
“Under the procedure, surgeons are removing organs within minutes after the heart stops beating and doctors declare a patient dead. Since the 1970s, most organs have been removed only after doctors declared a patient brain dead.”
Supporters claim that this is only done on patients suffering devastating brain injuries, such as from a car accident or or stroke. They also claim to operate within very strict guidelines, including that families make the decision to withdraw life-support independent of their decision to donate organs. This supposedly avoids the image of someone persuading a family to withdraw life-support specifically for the purpose of harvesting the patient’s organs.

I have learned that our hospital has done a few DCD procedures and is currently finalizing a policy on it (this became a requirement on January 1, 2007).

I had never seriously considered these issues before my daughter was born 7 years ago. The first time anyone suggested that we might need to consider it occurred when Elli was 4 days old. She had been admitted to the hospital’s newborn intensive care unit the night before, with the intention of moving her to the cardiac ICU as soon as a room opened up.

We had been encouraged to go home to try to sleep since we were in for a long haul. I called the nurse for an update around 8am the next morning. She told me that Elli was fine but that the doctors wanted to meet with us when we arrived. I called our pastor to update him, and we gathered our things to spend the day down there.

When we walked into the ICU, we were told that we couldn’t go into our child’s area just yet. My milk had come flooding in the day before, so I was extremely uncomfortable. I told them I needed to find a pumping room, so we headed down the hall away from our daughter’s pod. Both rooms were busy. As we were walking back, we ran into two people who were obviously looking for us. The man introduced himself as Dr. S___ and the woman as a hospital chaplain.

We had minimal experience with hospitals at that point, but we had watched “Trauma: Life in the E.R.” enough times to know that when they bring in the chaplain, the situation is bad. Yet, somehow my brain refused to consider what this could mean.

In a private meeting room, we heard words I’ll never forget.

“Mr. And Mrs. B___, this morning your daughter’s heart stopped beating for 30 minutes. We tried everything we could, and finally got it beating again with a calcium injection. We did chest compressions throughout the process, but because her heart valve is in such poor condition, we have no idea if we successfully circulated blood to her brain. I wish I could say, ‘But the good news is…’ but I can’t. Even if she makes it through this, her body has suffered such a significant trauma that it will not be ready to undergo the surgery she needs for a few weeks.”

It was like being flattened by a 4x8 foot section of plywood.

I asked if we could see our baby, and he said that would be fine. But Scott wasn’t sure he wanted to go. We both understood in an indirect way that what we’d been really told was that our baby was probably going to die that day. Scott didn’t want his last memory of her to be of her struggling for life with tubes and wires everywhere.

So this gave us an idea of how difficult these situations can be for families. Different people approach the same situation differently. I could understand Scott’s feelings, but I had my own. I didn’t want her to die surrounded by strangers in the sterile hospital room. I believed that as her mother, I needed to be with her til the end. But I didn’t want to leave Scott alone either. I was torn in two.

Then our pastor arrived. I swear at that moment I thought God had sent us an angel. How else could this man have known that we would need someone with us that morning who wasn’t as emotionally-involved or physically run down

Anyway, Russ offered to go with the doctors to check on our baby before we went back. This way he could prepare us for what we would see.

I learned later that Russ also took that chance to ask the doctor out of our ear-shot what they honestly expected. The doctor acknowledged that they didn’t expect Elli to survive the day.

When Russ returned, he told us what we would see. Elli had a tube in her mouth going into her lungs, connected to a machine called a ventilator that was breathing for her. She had more IV lines going into her navel (they were able to use the umbilical veins present at birth, which is unusual in a 3-day old baby – they are usually unusable by then) with many more medicines dripping into her little body. She still had the eye shields on because they were still treating her with ultraviolet light for the jaundice she had developed. She was basically on full life support.

He also asked us to call him right away if anyone suggested that we meet with the ethics team about her. I was able to really hear what he was saying and understood that we might have to make some very difficult decisions about when to stop medical intervention. I think that he may have even said, “Just because we have the technology to do something doesn’t mean we should necessarily use it.”

That moment was the first I realized that death isn’t always clear – a flat line on a monitor or a sudden unmistakable end. Sometimes the line is blurry, sometimes it takes an agonizingly long time, and sometimes families have to make gut-wrenching decisions about when to withdraw life support. Families are often asked to decide when to extend life and whether, just because the technology is available, they should really use it.

Our road didn’t continue deeper into the valley of the shadow. The hours crept by but no-one came with more bad news. They transferred Elli into the cardiac ICU, where we began a daily vigil at her bedside. We learned more about the people, medicines, and machines used up there. And ever so slowly, minute by minute, Elli began to improve. She eventually became strong enough for an initial open-heart surgery.

So we have not had to make the decision to stop life-support, yet. And I’m not sure how we approach the donation after cardiac death issue, if confronted with it. On the one hand, in cases of irreversible and devastating brain injury, prolonging life seems cruel and unnecessary.

On the other hand, I’m concerned that this could start a move towards euthanasia or mercy-killing based on someone’s subjective idea of what is a life worth living. I am also concerned that individuals who are unable to communicate, but who can still think, will be falsely assumed to be vegetative.

Ten years ago, Elli would be assumed severely mentally retarded because she cannot speak. Now we know that she has a lot going on in her head and once we teach her and the technology catches up to her, she’ll be able to demonstrate this in undeniable ways.

Mar 17, 2007

This All Sounds Too Familiar

This week has been a whirlwind, full of unexpected new challenges, along with plenty of the usual. All of us have been at various stages of a cold, with Anna going into a bad ear infection, and me pretty much useless for 2 days because of my own cold plus being up with the girls at night and totally sleep-deprived.

What made this a week to remember was the news we got on Tuesday. We had a specialized ultrasound of our unborn baby's heart, called a fetal echo. Since our first child was born with a rare and complex set of heart defects (truncus arteriosis, truncal valve insufficiency and stenosis, interrupted aortic arch, ventricular septal defect, and PDA), this has been a routine at 20 weeks for each of our pregnancies since. Always before the news was good.

This week we learned that we are having a little boy, and that he most likely has two complex heart defects: tetralogy of Fallot and pulmonary atresia. (Follow the links for photos and detailed explanations of each.)

Both sets of heart defects are serious and complicated, require multiple surgeries to manage, and are associated with a chromosome abnormality called DiGeorge Syndrome or VCFS. Elli tested negative as an infant, but we've since learned the test has a 5-10% false negative rate. Since she's always the odd one, we wouldn't be at all surprised to learn that she really does have the syndrome after all. We're highly suspicious of something genetic since the odds of having either one of these sets of defects is 1 in 10,000.

The odds in our family are 1 in 2.

Anyway, this news changes a lot of things. My OB and I agreed that I need to change my delivery plans and move to a hospital equipped with a newborn intensive care unit and staffed by neonatologists around the clock. Our baby will be transferred to the children's hospital nearby as soon as he is stable for tests to determine the full and detailed extent of his situation. He may need immediate surgery -- we won't know until born. We do know that he will eventually need multiple surgeries, just like Elli has, to manage this condition.

On the one hand, I've had this feeling all through the pregnancy that we'd used up our healthy baby cards and it was time for something big to come around again. But at the same time, I never thought we could face something as difficult as Elli's condition. She had a really rough time, with many complications including the brain injury that affects her life every moment.

The doctors can't make any promises, but they tell us that usually these babies are stable at first and we shouldn't end up with the same kind of death's-door crises that we had with Elli. I certainly hope they are right, but I also know that putting all my hope in statistics and odds is false and will let me down.

My hope must be in something unchanging. We believe in an intelligent higher power who takes a personal interest in our lives. We believe He allowed this for His own good reasons, and that those reasons He may or may not choose to reveal to us.

I've found the article "Don't Waste Your Cancer" really appropriate to this circumstance we've found ourselves in. It's written by a pastor from Minneapolis, right before he underwent cancer surgery. But you can replace the word "cancer" with whatever issue you are facing.

I don't plan to write a lot about this situation here, though I will probably write about the medical experiences and that sort of thing.

We've set up a carepage to update interested friends and family. If you are interested in subscribing, leave me a comment and I'll send you instructions. You can unsubscribe any time -- the website automaticallly emails you when we post an update or a new photo or anything.

Mar 15, 2007

6:30 a.m.


This morning, while I was showering, someone was roaming about the house getting into stuff.

Then I found this after Anna came and pounded on our bedroom door, asking for milk.

When I went into the girls' room to get Elli up, I found this on Anna's bed.

A big pile of potato chips.

Mar 12, 2007

Safety First


Sam went to a birthday party yesterday, at Build-A-Bear. When we climbed back into the car at the end, he pushed the box onto the floor (I had plopped it onto the seat next to him) and told me, "Chocolate Chip needs his seatbelt on. Will you buckle him in please?"

Mar 9, 2007

Daylight Savings?

I grew up in Arizona, the only state in the Union that does not (or did not -- I'm not sure their current status) go on Daylight Savings Time. Then, my sophomore year of high school, our family moved to the one section of Indiana that did not go on Daylight Savings Time.

So my first experience with this phenomenon occurred in college. At the time I remember thinking it was a stupid idea, but over time, that attitude has evolved into a White-Hot Hate that I can barely contain in April and October.

The truth is that DST is not about saving energy. Study after study has failed to show any energy savings, especially now that we have computers, televisions, internet, electric telephones, cable modems that are always on, and at least two cars per family.

The people who love DST are in retail and in outdoor-related businesses. When people have more daylight after work, they go shopping or golfing or to the park (oh and by the way... they DRIVE THEIR CARS), and they pour money into the economy.

So let's be honest. Quit feeding us a line about energy savings and talk about stimulating the economy. Or about lining the pockets of candy makers everywhere (who were one of the most vigorous promoters of this year's DST experiment, delaying our return to "standard" time (is it still standard if we're only on it 4 months of the year????) until after Halloween trick or treat.

I am trying not to completely despair. I learned this week that Congress did supposedly write into this year's experiment a clause that says if they cannot prove any energy savings (which they can't) from the change, they will return us all to the previous schedule.

I'm trying not to listen to the cynical voice in my head that whispers "As if" while Laughing. Hysterically.

Mar 5, 2007

New Feature: Quote of the Week

I have decided to add a new, recurring feature to my Soapbox. For my inaugural entry, here is a quote from the article, "Edwards: Jesus Would be 'appalled' by Country's Selfishness" by Mike Baker, found on WRAL.com, a TV station serving Raleigh, Durham, and Fayetteville, North Carolina.

Edwards has often cited religion as a part of his politics, frequently linking his efforts to fight poverty as a matter of morality. But he warned against using faith as a political strategy.

"If it is being used as a tool to garner votes, to convince people they should support one political party or the other, I think that is a huge mistake," Edwards said. "I believe with every fiber of my being that God is not a Democrat or a Republican and does not support either party."

I agree.

I am also in the process of completely re-evaluating my political and voting philosophy. I started out, as an 18-year-old, as a single-issue voter. I only voted for people who were pro-life, without regard for any of their other political views or experience or abilities to manage money and write good laws.

In the past 5 years, I've begun to reconsider the wisdom of this approach. So far, I haven't found a political party that I can embrace whole-heartedly, and I've read all the major and many of the minor, third-party material. I can't seem to find any party that values good stewardship, which for me encompasses fiscal responsibility, our natural resources, human life and the livelihoods of our people, and our reputation and influence on the world stage.

So I'm still trying to figure all this out for myself. But for now, I know for sure that God is not a Democrat. Nor is He a Republican. He is God and is far far far above all that -- he controls the hearts of kings and directs them where He wills. The Bible never says, "but only if that king is a pro-life Republican."

Mar 4, 2007

Just Say Yes

Saturday night at dinner, Anna kept saying something over and over, but Scott couldn't figure it out.

This happens a lot.

He finally said, "Anna, I don't know what you want!"

She paused, looked at him, and replied, "Just say yes."

Mar 1, 2007

Boggles

I've been trying to go to the gym 2-3 times per week. We belong to one with a pool, but I haven't been lap-swimming because I didn't have any goggles and my eyes don't like chlorinated water too well.

I finally remembered to pick up a pair at the store a week ago, so I finally made it to the water last week. It's a much tougher workout than I remembered! It's much easier to get my heartrate up and feel like I'm working hard than on an elliptical trainer, without all the sweaty misery.

Sam and Anna discovered my goggles almost as soon as they entered the house. When Sam realized that they keep the water out of your eyes, he was hooked.

So today, at Target, I decided to buy him a cheapo pair of kids' goggles. He picked blue, of course. Anna wouldn't be left out, so she picked out ones with turtles around the eyes.

When Sam saw this photo he said, "Look Mom! I'm a superhero!"


Anna came up with this forehead style all by herself.
She calls them "Boggles."
She also referred to the lazy river section of the leisure pool as a "ribber."
This girl takes after her mother in so many ways!

Heart Ache

Last night I didn't sleep very well. I had vivid nightmares.

I dreamt that my sister, who was having a baby at the same time as me, had lost her baby and had to be induced. I was with her at the hospital, and as soon as her little baby was born, my body spontaneously delivered my baby, still inside the amniotic sac.

The weirdest part was that my baby was still alive when born and the sac was full of air, not water. The baby's skin looked mottled and as she cried, her veins would appear and disappear every second. (We both had girls, in my dream.) The nurse in the room called this strange appearance "turtle baby." The baby stopped moving within seconds, and there we both were, holding our lifeless babies. In a particularly gruesome moment, my baby's body started falling apart as I held her (that detail courtesy of watching "Lost" last night, I suspect).

Then I woke up.

But not really. Because half of my dream isn't a dream. My sister and I were expecting babies within days of each other this summer. But last week my sister found out that the baby she was carrying had no heartbeat. This morning she's being induced. She was far enough along (15 weeks) that they should be able to tell if the child is a boy or a girl. They plan to name the baby and have a service for him or her tomorrow or Saturday. It's very important to her that everyone watching knows that they believe this was a real person and that they loved the baby very much.

My heart aches so much for her, and even more so because we were expecting babies at the same time this summer. It's a tragedy that Scott and I have tiptoed up to the edge of, but not yet walked through.

Today will be an awful day, but no-one can walk that dark road for them, bad as we want to. All we can do is pray for them, express our unconditional love, and be good listeners as they grapple with the emotion and questions and grief. I know that they love God and are learning how they can rest each moment, find real comfort, and walk in the grace He promises to give generously and moment by moment. So they are in the best hands.

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