Friday, 27 February 2009

More Applications

Since completing our dossier we have been working on applying for adoption grants. Some of the grants are almost as much work as our initial applications. Today I will mail our third application packet. There is one more grant that we can apply for with the information we have, but they don't evaluate applications for a few more months, so I decided I will take a short break from paperwork. I need it.

For some reason the grant organizations all ask very similar questions, but they ask them differently enough that you can't copy and paste from grant to grant. Happily, I have this blog to self-plagiarize from. I thought I would share one of the essays that I reworked from a post I wrote about Leah.

What desires do you have for your children as they grow and mature?

When we learned of our first-and only- pregnancy we prayed every night that God would use the life of our baby to bring Him glory, first and foremost, no matter what that meant. We asked God to allow our child to know Him. We told God we were willing to accept whatever cost that entailed as parents. This was the greatest desire that we had for our child. Praying this felt natural and easy. At the time we didn't know that our daughter would die in our arms shortly after birth, a victim of our mangled genes. At that time, trusting God for the future of our family wasn’t difficult. True sacrifice was far away.

After learning that our baby would die shortly after birth, we continued to pray that our baby's life would bring glory to God. We knew that our second prayer would be answered, as our child would pass from our arms to God's in a matter of minutes. As we grieved prior to labor, we found so much comfort in knowing that God could still use our baby's life to glorify Him. Amy remembers telling a friend that even though it felt like we had lost everything, we knew this prayer and desire hadn't been taken from us. It was the one sliver of hope we had to cling to. Although our daughter would never be able to share the gospel, serve her community, raise a family, or really "do" anything, we knew her existence and our response could point to God's goodness. We believe that her short life absolutely brought God glory, and it is our ongoing prayer that it continues to do so.

When we began to pray for the child that God would bring into our family through adoption, praying our "first prayer" was difficult. Trusting that God will bring a child into our family is hard. Even though we know that our adoption is in God's control, and not ours, it felt like praying that way meant relinquishing some control we weren't ready to give up. Instead, we prayed for our child's health, his or her caregivers, and birthparents. It took time before we were able to choke out the words, telling God that as parents we were willing to go through anything he saw fit, if only our child could know him, and that our child's life will bring him glory.

Praying in this way continues to be difficult. We know first-hand that loving a child exposes you to the possibility of heart-wrenching loss. Laying our desires, and our pain and our suffering at God's feet through prayer has proved a difficult act of obedience. Yet we must do it, because it expresses our truest and purest desire for this child we plan on adopting, and each child God brings into our family in the future. The only desire we have that matters is that our children will call Jesus Lord, and live abundantly in him, and that through this their lives would bring glory to God. Since we pray this prayer in a broken world, we know that its fruition might mean earthly trouble. It is not a prayer to we take lightly, but it is prayer we must pray throughout our children's lives.


#1 We had our support group at the hospital this week, and while we were there Jeff took some of the little blankets I made into the maternity ward. I couldn't do it. I do want to though, at some point, so I kept some of the blankets for another time.

#2 At our meeting I shared my story and my desire for a little green leaf for my medical file, and our group leader confirmed that the leaf picture is indeed the hospital's symbol that the patient is suffering a loss.

#3 We are hoping to receive the affidavits from our lawyer in Uganda next week. This is the start of our official court process. The first family from our agency's program is home with their adorable twins. They speak so highly of our lawyer, Isaac. They found him to be a man of strong faith and high integrity. They said their paperwork was impeccable. We are so exited to work with him.

Wednesday, 25 February 2009

Relactation Frustration, or, An Unpleasant Surprise

On Monday I had a hard day. Mondays used to be harder for me than other days, I think because all the fun and distractions of the weekend end on Mondays, so I have more time to think, which means more time to miss Leah. As things have gotten a bit easier, Mondays haven't been noticeably different than the other days of the week. I think my encounter on Friday with the nurse, and my residual feelings from that factored into it as well. Anyhow, Monday was just one of those days when I really missed Leah. She was on my mind all day long. Some days are like that.

After a long day of feeling sad, I decided I should think about something a little happier. At my appointment on Friday I had talked with my doctor about adoptive breast feeding, and so I decided to do a little more homework on the subject. I ended up reading some articles written by women who have successfully breastfed "older" adopted children - those adopted between 6 months and a year. It was very encouraging. It will likely take a great deal of effort, and will probably take months, but it is possible to simulate breast feeding with the help of a supplementer and some people have even taught older children to latch and feed naturally. I'm not holding my breath on that one though. I spent maybe an hour reading articles and learning about the equipment I will need and the techniques that moms have successfully employed. Again one hour reading, and maybe another half hour thinking about when I want to get started, and what I might take on our trip to Uganda. So, an hour and a half (at most) of thought commitment to breastfeeding.

Tuesday morning I got a special surprise: breast milk.

I am pretty irritated. Don't get me wrong, I am happy that I apparently still have the ability to produce milk. I am irritated because it is a painful physical reminder of what I don't have, when my week already started out badly. I am irritated because I am sore and uncomfortable. Also, now I feel really impatient about the adoption. Clearly I need a baby today. I could feed it. In addition, now I clearly need to stop researching adoptive nursing, but I wasn't finished. Since we don't know how much lead time we will have before traveling, and it could be as short as four weeks, I had hoped to know what products I wanted so that the day we got our referral I could go buy my pump, place my orders for specialty products, and start preparing.

Obviously, the amount of milk I am dealing with is nothing compared to what happened right after Leah was born. It doesn't hurt nearly as much. Still, I don't want to deal with this right now. I had to hunt down my ice packs and start binding again. I am confident this will resolve itself quickly, but I am nevertheless not enjoying it.

Monday, 23 February 2009

A Little Green Leaf

Our first day at the hospital the woman from food service who delivered my lunch offered us congratulations on the impending birth of our baby, as well as some words of encouragement about getting through the labor. I thanked her, and she left. Her words reminded me of what I was missing, and they underscored my feelings of isolation and loneliness. Everyone else on that floor came in excited and nervous and happy. I came in hoping for the best from a terrible situation. I didn't want to be reminded of that. My mom talked with my nurse to make sure that it didn't happen again. Evidently the food service staff is not supposed to enter the rooms at all, but there had been a mix up with the order and the woman had wanted to get my food to me as soon as it was ready rather than leaving it for one of the nurses to take in. My nurse was horrified at what happened and even the food service manager called to apologize. Shortly thereafter, someone placed a picture of a green leaf with a dew drop on it outside of the door of my hospital room. Obviously the leaf was a sign intended for various hospital staff to alert them that we were in a difficult situation. When we left the maternity ward to go upstairs for recovery, this little leaf picture followed us.

Recently I went to my OB-GYN for my annual check-up. Whilst checking to confirm that my last appointment was indeed a year ago, the nurse looked at my chart, and must have seen that my last check-up happened at a pregnancy confirmation appointment. After weighing me, she asked if I had lost all of my pregnancy weight. I said yes, hoping that could be the end of our conversation. Then she asked me how much weight I had gained during pregnancy. That put me in a bad spot. I gained ten pounds. If I say to a nurse, I gained ten pounds, and don't say anything else, then I will seem like a horrible mother. Only people who smoke, or do drugs, or starve themselves will gain such a small amount of weight during a normal pregnancy. I hate having to tell people about what happened, but I felt weird ignoring her question, or not telling the truth.

I probably should have just said something like, "I don't want to talk about it," but instead I came up with "I only gained ten pounds because my baby died at 25 weeks." By that point she had the stethoscope in her ears to take my blood pressure (which was probably sky-rocketing by that point). "How much did you gain?" she asked again. I repeat above awkward statement. She responds, "Oh," and tells me my blood pressure. 110/70. Guess I am fine after all. Then she hands me my paper outfit, tells me to change, and leaves. I do so, then sit in the office waiting and wondering why the nurse didn't even say she was sorry, and why there isn't a note in my file, or something to indicate what has happened so that I don't have to deal with questions about my pregnancy. I called Jeff on the way home to talk about it, and he suggested that I should get a little green leaf sign to put in my file. I agree.

Thursday, 19 February 2009

Little Blankets

The hospital where Leah was born handles many of our area's difficult pregnancies and deliveries. Thus they must see many babies born far too soon, and many babies pass away. For the parents that suffer through this they provide a memory box, hospital bracelets, foot and hand prints, and little blankets. When Leah was born we received a little quilt for her. We had our own blankets as well, but for those parents caught unaware by an early delivery, the hospital blankets are all they may have. The blankets are usually provided by parents who have lost babies at the hospital. For a long time now I have wanted to make some blankets to give to the hospital, so that other parents like us will have blankets when their babies are born.

At first, I thought I might make some and take them in on an anniversary, but six months fell on Christmas Eve. I was in California, and I hadn't made any blankets by then anyway. While I was home I did pick up some fabric at The Cotton Shop, the same place where I found the material for Leah's blankets.

This past week while Jeff was at the lab around the clock, I went on a sewing spree. I made fourteen 12 by 12 blankets. I made some in blue and some in yellow, but all lined with pink. They are the same type of blanket that I made for Leah, just different fabrics. I sewed so much I used up a few spools of thread.

I'm not sure if I will take them in all at once, or if I will split them up and take them. At this point I am a little afraid to go into the maternity ward and hand them over. I have been back to the hospital many times. We go for our monthly support group, we have met with our genetic counselor and done blood testing, and we have attended a CPR class there for our adoption. I have even been in the wing of the hospital where the maternity ward is, but I have not ventured through those doors. I really don't want to.

Our experience at the hospital was quite good, such as it was. But even though that maternity ward is the place where my baby lived, it is also the place where my baby died. I just don't know if I can go back.

Monday, 16 February 2009

Thank you, Hallmark Hall of Fame

Jeff and I have a Google Analytics account that allows us to track the number of visitors to this blog each day, and to see how people read it. Some use Google reader, others type in our web address, and other Google search "loving little leah" or some variation. When we see how many people read our blog regularly, it really motivates us to keep posting. Even more motivating are the number of people who reach and read our blog through Google searches like "potter's syndrome" or "lethal skeletal dysplasia" and then read multiple pages. These search inquiries tell us that our blog is reaching people who have received negative diagnoses.

On Monday night two weeks ago we checked the Analytics account, and noticed a very odd spike. Almost 900 people (unique hits) had landed on the blog on Thursday, and another 800 on Friday. We assumed there was something wrong with Google reader. We reliably have about 35-50 people looking at the blog everyday,with even higher traffic on days when something interesting happens. The majority of these hits are returning readers. But 900? There had to be something wrong.

Jeff looked into the traffic sources and discovered that people all over the country had been googling the term "Loving Leah," and landing on our site. Apparently CBS released a Hallmark Hall of Fame original movie last week entitled "Loving Leah." From reviews I understand that it is the story of a marriage that takes place between a man and his brother's widow in order to comply with an old testament law regarding marriage. The premise is that the marriage begins only as a pretense, and that somewhere along the way the man ends up falling in love with his new wife, Leah. It didn't get great reviews, but clearly many people liked it since they googled it in high enough numbers for 2,000 people to inadvertently land on our site over the course of the weekend. Most of them didn't stay for long, but plenty of people did read multiple pages. It is so interesting to see how people come across our blog. We just hope that it reaches the people that need it.

Monday, 9 February 2009

Sometimes You Get What You Pay For

At the end of October we received an email in our Loving Leah email account, with the subject line "SRPS." The contents validated why we continue this blog, but they made us terribly sad. In the message we learned of another family who had recently received a diagnosis of probable SRPS. Eric and Erin learned that something was wrong at their 20-week ultrasound. They originally were told their son, Evan, had TD (a non-inherited lethal skeletal dysplasia), but the doctors at Cedars believed they actually had SRPS without the presence of polydactly. Thanks to the amniotic fluid, the doctors could see the baby well, and both the specialist in their hometown and those at Cedars were able to look at their ultrasound pictures.

When we first "met" Eric and Erin, they were 24 weeks pregnant. They hoped to spend some time with Evan in their arms, just as we had with Leah. We emailed about gentle delivery techniques, how long they might be able to carry him (those of us carrying babies with negative diagnoses have a higher rate of pregnancy complications), and how to cope in the meantime. I was so impressed by their commitment to their son, and their openness with us. It was a pleasure and a privilege to connect with them. I felt bad that we weren't able to offer them more support, but we were swamped with adoption paperwork and only barely handling our own grief.

Erin had a healthy pregnancy, and Evan stayed strong the entire time. They ended up delivering on Thursday, January 22. I knew they were headed to the hospital, so I waited impatiently for updates all weekend. Jeff and I were praying that Evan would survive labor and have time with his parents and big sister.

On Monday morning we got another email, entitled: The Doctors Were Wrong!
Evan not only survived labor, he was still going strong, at home, with no respirator. In fact, their doctors told Eric and Erin a mistake had apparently been made. Evan has dwarfism, but not the lethal variety. They predict he will have a "normal" lifespan.

That is why you fight for your child.

Eric and Erin thought they were fighting for a few precious minutes, but in reality they were fighting for a lifetime.

They believed they carried Evan for a chance to kiss his cheeks, whisper in his ears, and cuddle him as he passed away. Now they will do those things every single night as they tuck him into bed.

It is no easy thing to carry a baby when you know that baby won't survive after birth. The sacrifice Erin and Eric made for their son had benefits their doctors didn't anticipate. They have a son, and they get to keep him.

Seven percent of babies diagnosed with a lethal skeletal dysplasia actually have non-lethal forms of dwarfism. We are so thankful that in this case the misdiagnosis happened to a couple that cared about meeting their baby so much.

They "chose life" and they received it. How fitting.

Read Evan's story from their perspective:

Thursday, 5 February 2009

Adoption Update, or Looking For a Referral

Our dossier made it through county and state verification...not surprising, but it takes time. Now a copy of our dossier has been sent electronically to our adoption lawyer, Isaac, and he is going to make sure our documents are in order before we send the originals to the Embassy in Washington D.C. for final verification.

The best part of all of this is that now Isaac knows about us, and he can begin to keep an eye out for a baby that will be a good match with us. He will be searching for a baby whose needs we can meet based on all the information about our lives collected in our homestudy and the recommendations made by our social worker. In adoption speak he is "looking for a referral." We have no idea how long it will take him, but I am so excited that he will be looking.

Please pray:

That our paperwork will be approved without needing any additional documents.

That Isaac will have good discernment and that he will stay healthy and safe.

That God will place the right baby in Isaac's path.

That our baby receives the care he or she needs, especially food, shelter, and human contact.

Thank you for your prayers regarding my patience during this wait. So far I have been patient beyond my expectations and usual abilities.

Tuesday, 3 February 2009

Progress, or Busy Days

This past week I have done a few things that I am quite proud of, as to me they represent my ever increasing ability to live "normally" again.

In the past I used to plan out meals and get my major shopping done every two weeks. It kept me from having to run to the grocery store constantly and from having to think about what to make for dinner. This system began to lose steam after the diagnostic ultrasound, and it completely fell apart after Leah's birth. For quite some time we had meals provided for us by our wonderful friends, and when my mom was here she also helped stock up the freezer with good things from Costco. Since finishing off all of that I have been attempting to cook a little more, but we have mostly been living on things that I "cook" by removing the wrapper and sticking in the oven. I was making maybe one legitimately cooked meal a week, with leftovers for another meal or two. Eating frozen food has been getting old, and a little repulsive. Thus, this week I sat down and planned two weeks of dinners. I went shopping on Friday, and on Saturday I had a marathon. I made cornbread for my church's chili cook-off, pound cake with chocolate cream-cheese frosting and strawberries for the Superbowl party I attended, spinach and cheese enchiladas (some for the freezer and some for the fridge), and sloppy joe mix to put in the freezer. Last night I made a BBQ chicken sandwich mix. Now I will only have to cook two nights in the next two weeks, once for our small group potluck and once to make breaded pork chops, which are easy but can't be done ahead. Now I can still make dinner by pulling things out of the fridge/freezer and heating them up, but everything is much healthier and cheaper.

I began my cooking rampage because I decided to take dinner to a family I know from church who recently adopted a baby boy, and I ended up making so much food that I also dropped some enchiladas off with some friends who are in the middle of trying to sell their house for a big move. I am getting better at thinking about people other than myself and having the energy to do nice things for other people. This isn't the first time I have done anything for anyone, but I haven't had the energy or desire to be very helpful lately. It can be so hard just to keep myself operating that it is extremely difficult to also try to anticipate and meet the needs of others. I think that I will probably regress quite a bit as Leah's birthday approaches, but I am excited about this accomplishment for now.

This weekend I also attended not one, but two, parties where a baby was present. Jeff and I have been in full baby-avoidance mode for sometime now. It just made things easier. It still makes things easier. But I survived. I even dressed up because one of the parties had a theme, a huge feat because I prefer jeans in any situation. I wore a dress I bought in college, when I used to dress up for parties all the time. Had to mention that because still fitting into a dress I bought in college is awesome.

Last but not least, I helped run my church's chili cook-off on Sunday. It went more smoothly than any other year, and had the highest participation yet. I take credit for none of this, as I barely did anything this year besides the shopping and ordering people around in the morning, but it was great to see it happen. Although I was in the kitchen for most of it, I hear that a good time was had by all.

This upcoming week is going to be much quieter, which is great because I am exhausted. I will probably completely crash on Wednesday or Thursday, because I can't sustain such a high energy level for so long. Good thing I stockpiled so much food. I think that the thing that makes me most proud about this weekend is that I was able to grieve in between all the activity. In the past few months I have generally used activity to avoid my feelings, but on Sunday between church/chili and the Superbowl I had lots of time to cry and be sad about the day.

Sunday, 1 February 2009

The Pregnancy "Milestones" Begin

On February 1, 2008 Jeff and I found out we were pregnant. Even though I knew before we confirmed it, seeing that plus sign still shocked me in a way. It was real. We were having a baby. Our lives would be changing forever. It was a fun day.

That night we had dinner at a friend's house, and a funny story was told about one of the kids saying something about Jeff and me being pregnant, and her mom quickly correcting her, and assuring her that we were not having a baby. Jeff and smiled at each other and squeezed hands under the table, because we knew we were.

Today we begin to move into our pregnancy milestones; the day we found out, the day we announced, and ultimately, the day we were told that something was terribly wrong. It continues to amaze me how in tune my body is with my emotionally state. On these milestone days I wake up feeling tired, usually have an upset stomach, and often also have headaches and a sore throat. I feel physically bad even if I'm not particularly sad on those days. I always think that maybe I'm coming down with something, but then the next day I feel fine.

Usually on these days I take it easy and rest as much as possible, but today I have a lot going on. This morning we had our fourth annual all-church Chili Cook Off, which I had to attend because I help run it. This year we had our biggest turn-out yet, 28 chili entrants and well over 200 people attending. Tonight I will go to a Super Bowl party. On top of all of this, Jeff is working this weekend, so he hasn't been home since Thursday morning. It is much harder to grieve alone.

I have a hard time believing it has been a year since we started this journey. Experiencing pregnancy milestones, and moving towards the anniversary of Leah's birth and death really emphasizes how long it has been. Many things are getting easier. Socializing doesn't make me anxious anymore, and it used to be a very difficult thing to do. I have learned to handle rude comments, and most people avoid the subject now anyway. Also, I don't worry as much that I will have an emotional breakdown. Maybe I have just gotten so used to crying that I am less sensitive about where and when I cry.

The problem is, as things get easier I think they also get harder. People expect that you are "done" when you aren't even close. I will never be "over" this. I will never not miss Leah, and I will never forget about her. She was too precious to me for that.