Baby Journey

I feel compelled to explain here some of the journey that has lead us to our pregnancy with our twin boys. I am still asked questions regarding the pregnancy and birth of our daughter and I didn't even realize some of the information that was misunderstood. We've been private about much of the road, but there are details that I wouldn't mind sharing. If you're interested, I've published some of my journal entries to share bits of our experience. You can also view the slideshow from the memorial service on YouTube.

Tuesday, November 4, 2008

Then & Now

Every time I got up to pee last night I came back to bed and cried. The last time I was in this bed I was pregnant; I couldn’t sleep because she lived in me and was consuming my space; the future was unknown; I had swollen ankles and toes; I was sleeping in a sitting position; when I laid on my side I had to have a pillow under me to hold me swelling belly. Now everything was just like before except it would never be the same. I even decided to keep taking my prenatal vitamins because it seems so sad not to, like I’m over her or something. They were for her. I still want to take care of her.

From the beginning...

After many years of trying, we found out we were pregnant and due January 15, 2009!

Week 9

I've been fretting about not “feeling” pregnant. I feel great with the exception of being a little tired. But no nausea, although I do wake up daily without an appetite. Maybe it's because we waited for this day for so many years? Why can't I just believe?

Week 13

Skipped church because I knew people would want to talk about my pregnancy and I just don’t feel convinced! Once we hear the heartbeat on Tuesday I’ll promise to stop fretting. Help me to have fun with this, Lord.

(Tuesday) Heard the heartbeat today. Very relieving. Except I thought I’d feel different.

Week 17

It's our anniversary and while I was lying in bed I felt my first twinge of movement!

Ann comes in today! I am so excited these spontaneous plans worked out.

While Ann was here I did confess to her that I’m a little anxious and can’t get it out of my head that something’s not right with the pregnancy. She was understanding but also said I have to assume everything’s fine since I have no reason to think it’s not. She’s right. Harder said that done though.

Week 19

First ultrasound. Girl wasn’t very friendly at all and also said she wasn’t getting very good pictures. She did tell us at the end that we’d probably be asked back because she couldn’t get everything. At one point she went from quiet and unfriendly to really sweet which made us both nervous.

Week 20

My OB called and said there were some things in the ultrasound that gave them some concern and they needed me to go in to a specialist and have another. The perinatalogist's office (high-risk OB) was downtown and the hospital, Abbott, was connected to Children's Hospital.

Of course we've spent the weekend fretting. It's Labor Day weekend and we've avoided invites for plans because we're having a hard time considering that this child is going to be born unhealthy.

Tuesday, September 2

This is the day that threw a wall down on our life. I can feel it--from now on, everything will be “before” and “after” this day.

We had the ultrasound, and the woman was friendly but quiet. When she was done there was a very long wait and finally the neonatologist came in. He looked sick to his stomach and we knew whatever he was going to say wasn’t good. I was lying on the table with my belly exposed and he talked while he showed us certain things—that the heart and kidneys look fine, but the most “remarkable” thing is the baby’s bone development. This baby has a curved femur and a nucal fold, along with shortened long bones. These are all things that cause them to believe it has some kind of genetic problem called a skeletal dysplasia. A form of dwarfism. I just laid there not knowing what to say. We were in shock. Doc said we’d go into the office and speak with the genetic counselor who might be able to answer some questions.

We just sat in the stale room waiting for the counselor. We were in total shock. I mean, my belly was still sticky from the ultrasound gel. Once we met Janice we basically learned that there’s a huge spectrum of dysplasias and they didn’t know if they’d be able to determine which kind our baby had--our baby could be a little person or he/she might not live. We were still in shock and had a lot of questions they couldn’t answer.

They said they’d set up an appointment for me with more specialists, and in the meantime planned on sending my ultrasound tape to Cedar Sinai in California where they run a skeletal dysplasia registry and might be able to make a diagnosis, though they disclaimed that it might not ever come, sometimes not even after birth. The benefit of a prenatal diagnosis was that if we knew our baby's condition was lethal we could make arrangements and prepare ourselves. If it wasn't, then we needed to make some decisions about the care and intervention he/she would need.

On the way out we made another appointment. The laughing woman in front of us angered us both. Interesting how quickly our perspective on life has changed.

The ride home was hell. Mostly tears and silence. We just felt so uninformed which is the most frustrating part.

Over the past couple weeks we've told our parents and then friends. We've been scouring the internet to get information, trying to educate ourselves on all types of SDs. From the information we do have, Levi thinks it's very unlikely this would be a good outcome. In fact, achondroplasia (your average little person) is hardly ever diagnosed in utero. So we can scratch that off our list of possibilities. In fact, some of the things the doctor said are only fitting for lethal conditions. Why the heck didn't the doctor just say that? But maybe we're wrong. I am grieving so many aspects—what if this child is disabled? Will he/she be comfortable? Happy? What will our life look like? Will I have to deliver a dead child? Will our baby suffocate to death after birth like so many babies with dysplasias?

Week 21

Had the dreaded amniocentesis. It really wasn't a bad procedure, it was just one more solemn attempt at uncovering our baby's mysteries.

It's been a couple weeks since my amnio. We just learned that, as expected, there are no chromosomal issues with our baby. Just genetic (just--ha). We also learned that our peanut is a girl. A sweet girl.

Week 24

Levi felt our little girl move for the first time!

Noticing people being extra nice to me. I appreciate it and hate it at the same time. Also growing tired of people minimizing our situation by saying things like "I'm sure it will be fine, these things happen all the time" (referring to findings in ultrasounds). Levi and I are realists and although we know God is capable of a miracle, we know that He typically does not act in this way. I feel called to accept this circumstance and figure out how to live with grace and hope despite the situation.

Week 26

Janice, our genetic counselor, called and said Cedar-Sinai had a diagnosis and she would like to call us later that evening with details. I couldn't believe it! That evening I was hosting a shower at a friend's house and wasn't sure how I would accept the call while I was there, or even on the way home since I was riding with another woman. I asked her to call Levi, and for Levi to call me as soon as they'd spoken.

God worked out the details perfectly and the other woman randomly decided to ride home with someone else, and Levi's call came in just as I was getting into my car at the end of the night.

The baby likely has one of two skeletal dysplasias, most likely campomelic dysplasia. Nonetheless both are considered lethal. Now that they have a hunch, they can start working to isolate the gene that causes this form of dysplasia and if they see the mutation then they'll be certain. This will take a few weeks, but it will likely be done the mid-November.

In the next couple weeks we'll be set up to meet with perinatal hospice (I couldn't believe we were hearing such words). I would also work on a birth plan with the perinatologist to prepare ourselves for what’s to come; they don’t even do c-sections in these situations because they’re so traumatic on the mom and when she’s about to lose a baby they want to minimize her stress. I would deliver in the ante-pardum unit at Abbott and not the local hospital.

Met our baby in a dream last night. She was definitely not a newborn, though. Probably more like 6 months old—she had dark blonde, curly hair and big eyes with Levi's great, long eyelashes. She was beautiful! I gave her a million kisses and could swear I felt her soft cheeks.

Today we met with a different perinatologist and received a lot of great information on campomelic dysplasia. Dr. Wagner was very honest about the gravity of the situation and agreed with the Cedar doctor's diagnosis. He also talked to me about my physical condition and the likelihood of early labor. Because our baby wasn't able to process the amniotic fluid, it was building up in me and causing a condition called polyhydramnios. This is why I looked full-term.

Still having trouble breathing when I lay down at night. We did find that it’s one symptom of the fluid issue; I also know that it worsens when I start imagining her fighting for her life outside the womb. Respiratory distress is the primary cause of death for these little peanuts.

Week 28

Monday, October 27, 2008
I was bleeding heavily and called my doctor. They wanted me to call an ambulance but I talked them into letting me be driven to the local hospital.

The doctor was alarmed at my fluid level, but I explained that I was already aware of that condition. So after an exam and an ultrasound, and a very long wait, we were told that everything looks fine and the bleeding was a mystery.

Thursday, October 30, 2008
Since Wednesday night I hadn't been feeling well and was having light spotting. I called the doctor's office and told them my symptoms and asked if they thought I could just ride it out, which they did. The doctor asked again when I would be transferred officially to the care of the high-risk OB. I think she was getting concerned.

I called the perinatal clinic immediately and asked about it. I was set up for an appointment the following Wednesday.

This afternoon Janice, the genetic counselor, called and she has gotten back lab results and wanted to talk them through with us. This was much earlier than we'd imagined! These results might confirm our baby's diagnosis. For some reason it will be such a comfort knowing her condition for sure. You know, most people get to prepare for their baby by setting up a crib and agonizing over bottles. This is how we can prepare I guess.

The lab did find an alteration of the Sox9 gene, which confirms the diagnosis of Campomelic Dysplasia. It’s a new, dominant mutation. After birth it will be confirmed with x-rays. For future pregnancies this is the best case scenario since it is not a recessive condition. In some strange way this news wasn't all bad. The relief of a diagnosis was palpable. Unfortunately we knew from our reading that this gave our peanut a 1% chance at life outside the womb.

Also, she had been looking for a birthing class for us to attend (for hospice situations) and found a nurse who was willing to meet with us one-on-one to prepare us for birth. Such a relief.

Happy Birthday, Peanut
Friday, October 31 & Saturday, November 1
, 2008
Wednesday night through Thursday evening I had a consistent ache in my stomach and then had a lot of trouble sleeping from the cramping/aching. I got up a lot and found it very difficult to move around and get comfortable, the worst it had been.

Friday the ache continued and once in awhile reminded me of menstrual cramps. I was in charge of a women's retreat that weekend and wanted to head out Saturday morning without concerns about my health. I hated to call again and look like a complainer, but Friday afternoon I finally decided to contact the triage nurses so I could hear them tell me I was fine. The nurse was very firm and said I’m not comfortable telling you to not go in for a checkup, and she was calling them to say I was on my way. Ugh. If it weren’t for that I think I would have skipped it. I told Levi not to bother coming because he was in the middle of mowing the lawn and I figured it would be the same scenario as Monday and everything would be fine.

When I arrived I immediately had to pee—the first of probably three times in that hour visit. I put on a gown and they hooked me up to the monitor, and right away the nurse looked concerned. She wheeled in the ultrasound machine and started talking about low rates. I was thinking it was a problem with the machine since her heart rate had always been so good and strong. I asked her what was going on and she said it was unmistakeable, her rate was low. They hooked me up to an IV, and her rate dropped again and several times after that. When I stood to use the restroom there was bloody show.

The doctor came in and was aware of my condition, as well as the baby's. He asked about my plan which of course I didn’t have--we were scheduled to meet with everyone on Wednesday--in five days! He did an exam and said he felt a bag of waters and was dilated to a 2. He did a test to check the membranes and it was positive for beginnings of labor. I was totally shocked. I asked them to tell me when it was time to call my husband and they said to call right now. In the meantime they gave me a med to stop labor and a steroid that would give a boost to baby’s lungs. They said they were transferring me to Abbott where they were better prepared to care for me and baby. Unfortunately I was to be transferred by ambulance. I begged for no sirens. I really hated this drama.

Once Levi came in and was given the info it was only minutes and the stretcher came in. There were three peramedics. They had me lay on my side and then they strapped me in, and finally the tears came. I wasn't ready to have and lose this baby. I just learned about her fate YESTERDAY. Give me a minute, Lord.

Sirens the whole ride downtown to Abbott. The day was gorgeous, though, and I actually asked them to turn the heat off in the ambulance and they opened the window. All the better for hearing the sirens. Ugh.

Once we got there and were settled in our room a couple of different doctors came in to discuss our plan and options. There were hours of conversations and decision trees, and to this day I barely understand all of the implications of each choice, but the important thing is that Levi and I instinctively knew what we wanted to do and we were unified. Amen.

Night progressed and I had slight cramping. I was continually getting up to urinate. Everyone started using language that made me think they believed I would deliver soon, although at one point someone made a statement that “you MIGHT still go home, you never know.”

Finally at about 11:30pm we fell asleep. I awoke at 2am to use the restroom. I had a huge burst of energy and knew I would not be able to fall asleep again. I watched Rachel Ray Travels and HGTV, pacing the room the entire hour I watched. I decided I’d better try and get some sleep so I went to the bathroom once again. I climbed in bed to settle in and felt my water break. I made my way back to the bathroom but by the time I got there it was all over the floor and coming out of me pretty heavily. The gush happened a couple more times, all over the floor. I felt horrible. I asked our nurse, Bethany, what this meant and she smiled and said “it means you’re not going home.” I told her how I didn’t know about labor since we never got to meet with that nurse and asked her if she would coach me. She was wonderful. She assured me delivery still might be far away, we’d just have to watch the contractions.

Contractions kept coming and seemed stronger and stronger but tolerable. I was being monitored now. She said I could have the epidural at any time but I really felt fine. At 4:30am Levi stepped out to call our families and Ann. Both of our parents were planning on coming. We knew it was going to happen today. At one point the pain was uncomfortable but I figured I was fine, completely forgetting the fact that they get stronger and harder!

By about 6am the epidural came. Bethany said she’d come back in 20 minutes or so and give the catheter. When she returned I mentioned the huge pain that had started and that it was new—it was a feeling of HUGE pressure like I needed to have a bowel movement. After the second one she did another exam and said she felt the baby's head. It was 6:45am. She left and warned the docs and when she came back in she said we were ready to go the ER.

She wheeled me in and I was surprised at how large the room was. It was full of people. Bethany explained what I’d be feeling and how to push and so we went through a practice push. It was such a strange experience. After about the sixth set of pushes I felt her slide right out.

Our baby was born with a heartbeat but no other sign of life. She did not respond to resuscitation attempts by the neonatologist. She was 2 pounds, 9 ounces, 12.75 inches long, and she lived 6 minutes.

As they started cleaning me up Bethany held her and cried. I said her name was Elisabeth Ann. We actually felt relief for this short and easy labor and delivery. Also praising God for the answered prayer of Elisabeth’s trauma-free life.

Once we were back in the room I wanted to snuggle with her. She was so soft and alive-looking. We checked out her little body and could see her dysplasia clearly. She was so beautiful.

I spent the morning holding her and then at 9:30am the bereavement photographer came. I had told the nurses prior to delivery that I didn't want anything like that but I'm so glad they ignored me! There was beautiful morning light coming into the room and I think the pictures will be beautiful.

I spent the day napping, crying and snuggling her. Unfortunately every time I fell asleep I would jolt awake in disbelief. But those couple hours with her were so precious. I smooched her silky cheeks a million times and smelled her endlessly. She was my baby.

The nurses were wonderful and all of the personnel who entered the room acted appropriately. There was a picture of a rose on our door which signaled a death. I can't believe that's our door.

That evening we went home. The nurses hated to discharge us so soon but they obliged. The details of that day and our gut-wrenching goodbye were precious and personal. It's so clear to me; it was a day I could relive in a moment.

That night I sorted through the bag of her things I’d packed. The two blankets she’d been wrapped in, the pink knit blanket that had touched her skin, and the two hats she’d worn. I put the hat she’d worn just after birth in a baggy to preserve the smell and kept the other out so I could sleep with it. It smelled just like her and was so comforting.

Every time I got up to use the bathroom I came back to bed and cried. The last time I was in this bed I was pregnant; I couldn’t sleep because she lived in me and was consuming my space; the future was unknown; I had swollen ankles and toes; I was sleeping in a sitting position because it’s better for pregnancies; when I laid on my side I had to have a pillow under me to hold me swelling belly. Now everything was just like before except it would never be the same.

Sunday, November 2, 2008
Both sets of parents had come in yesterday afternoon and were at the house, although I barely saw them. I spent a lot of hours in our bedroom.

I asked the moms to clean up the nursery so I didn’t have to see all of the baby gear. I decided to return some of the bigger items that can't be stored away out-of-sight.

Around noon I had a sad moment that made me decide to spend the rest of the day alone. I noticed some gas bubbles in my stomach and thought for a minute it was baby. It felt just like her.

Mom came in before bed and said something that made me think of a dreaded day—when I start my period again. Starting my period had been a torturous event for 5 years, but this time it would be different.

Monday, November 3, 2008
Today was better. Tomorrow we’ll meet with the funeral home.

Tuesday, November 4, 2008
This morning I awoke and noticed that my milk had come in. How fitting for the day we pick out an urn in which to keep the remains of our daughter.

Wednesday, November 5, 2008
Today Levi and I got out of the house and took the car in for a small repair and then went out together for breakfast. It was nice to be out. We talked about how nice it would be get away for a couple days alone so we decided to go to Duluth. We would leave tomorrow.

Thursday, November 6, 2008
Arrived in Duluth in time for supper. I wasn't much fun. I just kept crying and had a hard time even keeping conversation going. We ended up back in the room by 7:30pm and an hour later I was sound asleep.

Still very full breasts and leaking like crazy.

Friday, November 7, 2008
I awoke very early and made the choice to have a good day. I don’t feel badly getting emotional, I knew Levi didn't care how I was, but honestly I'd rather cry while we're out and about than sit in the room. It ended up being a great day. Lots of emotional moments but it didn’t stop us from enjoying each other.

Saturday, November 8, 2008
One week ago today we said hello and goodbye to our little girl.

On our way home from Duluth we talked briefly about plans for a memorial service. It hadn't crossed our minds but some of our church family had mentioned it and it was starting to sound like a good idea.

I got emotional on the way home talking about cleaning out the humidifiers. We are so ready for this next phase of life, taking care of our home to care for a child, and yet there’s no child.

Sunday, November 9, 2008
I'm dreading church but also excited to receive love. I'm just so anxious about possible awkwardness. I asked Levi to never leave my side today, which will be very hard for him since he has a job to do! Thank God he’s not preaching, though.

Church was fine--I'd even say it was really nice. I did find myself wanting to talk about her a lot, though. Hope people wanted to hear ;)

Went to the jewelers and picked out a ring with Elisabeth's birthstone. I was thrilled to have a memorial of her with me all the time. Like I'll need reminding.

Monday, November 10, 2008
Definitely dried up. Relieved it went so quickly and uneventfully but also very sad. Hoping I get to do this again someday.

Picking up Elisabeth's urn today, also my ring. Somehow that's comforting.

Tuesday, November 11, 2008
This might be one of the hardest days yet. This day--my first day back to work after giving birth--was supposed to happen in April. With a sweet baby in daycare. I was supposed to be crying because I hated leaving her and because I'm a bad daycare mom, not because she was gone. I miss her terribly and cannot imagine an hour where she would not be in my thoughts.

Wednesday, November 12, 2008
Everyone says this should get easier in time. Not true. As sad today as yesterday and a week ago. Maybe sadder.

I had a call with my boss today. When she called I choked back tears to answer but when she said "How are you?" I couldn't hold it in. I started bawling. Miss you so badly, baby girl.

Friday, November 14, 2008
Still crying every day. Preparing for the service has been hard but also feels purposeful. I finished the journal with my pregnancy and birth story which somehow feels like weight off my chest--a tribute of sorts. I think a part of me wondered if I'd really remember everything and now that it's etched in stone I can relax.

Monday, November 17, 2008
Feel compulsive about getting ready for this memorial service. It doesn't need to be perfect, it just needs to be a tribute.

Dreamed of Elisabeth last night.

Tuesday, November 18, 2008
The memorial service could not have been more perfect. I actually beamed the whole time! It was the closest I think I'd ever come to an out-of-body experience. I was so proud of what we'd put together and I was so excited to show her off and have a celebration. The slideshow was beautiful. I am so humbled by the loving hands of our church family who seriously came out of nowhere without being asked and created a perfect service. It's still SO HARD for me to receive, though. People just caring for you and giving so much of their time and energy is so uncomfortable. But so awesome.

I felt foolish because for some reason I really didn't have sadness right then. I felt so much joy at the outpouring of love and excitement for this tribute to our girl!

Thursday, January 15, 2009
Today was our due date. I took the day off in anticipation of my emotions. Interestingly it really wasn't that sad of a day. If I wished we had given birth to a healthy girl today, I would be wishing for a different baby, and I wouldn't trade our moments with her for the entire world. Instant love. It changed me completely. There isn't an inch of me that doesn't yearn every single second of my life for another baby. I'm different now, she made me a mom and I want to fulfill that with another child. Or two! Heck, if I'm asking--maybe three!

Although we are thrilled to have conceived in the spring of 2009, we still grieve Elisabeth. We both have our days.

Saturday, September 12, 2009
I’d been thinking all year about what to do to honor Elisabeth. I didn’t feel a peace about doing a drive or anything “public” like that, so I decided to attend the closing ceremonies of the “Kaila and Grace’s Hope and Hearts Run” in Coon Rapids. Online I’d put Elisabeth’s name on the list of deceased babies, so when they read the list of names I got to hear her beautiful name read. Loved it. Didn’t even feel sad, just pride that I was her mom.

Saturday, October 31, 2009
Trunk or Treat at church, and the anniversary of going into labor with Elisabeth. I thought I’d be alright so I went, but immediately started crying and couldn’t get my composure. Levi completely understood and I came home and read my journal entries about her and felt much better.

Sunday, November 1
I can't believe it's been a year. Today is the anniversary of Elisabeth’s birth and death. I skipped church. Levi wished he could have. This afternoon we decided to go to brunch and had a really nice time. It's not like we talked about the pregnancy or her the entire time. And since I'm pregnant with the twins there is hope growing inside me that of course gives us great comfort and peace.

May the God of hope fill you with all joy and peace and you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Romans 15:13

I must have listened to this song for one month straight:

All I Can Say
Chris Tomlin

Lord I'm tired, so tired from walking
And Lord I'm so alone
And Lord the dark is creeping in
Creeping up, to swallow me
I think I'll stop, rest here a while

And this is all that I can say right now
And this is all that I can give
And this is all that I can say right now
And this is all that I can give, that's my everything

And didn't You see me crying?
And didn't You hear me call Your name?
Wasn't it You I gave my heart to?
I wish You'd remember where you sat it down

And this is all that I can say right now, I know its not much.
But this is all that I can give, yeah that's my everything.
This is all that I can say right now, I know its not much.
But this is all that I can give, yeah that's my everything.

I didn't notice You were standing here
I didn't know that was You holding me
I didn't notice You were crying too
I didn't know that was You washing my feet


Lindy said...

i love you jen and levi

Sue Lawson said...

Thanks for sharing Elisabeth's story. I hadn't heard the details and was moved to tears by your writing, Jen. Love you both and continues to pray for your special family!

Tonya said...

Jen &'s been years since I have seen either of you..and yet here I sit,in tears, mourning your precious baby girl with you. Thank you for having the courage and grace to share your story...We have two little "peanuts" in heaven as well...I'm sure our girls are friends by now...

all my love,