Frustrated

I apologize in advance if this post seems whiny. I try very hard to focus on the positive, but some days it is harder than others.

I had my appointment today at the local clinic. The doctor was extremely kind and caring. However, I felt like he didn’t listen to me. I told him we were considering both sperm donation and embryo donation and he essentially told me we should do sperm donation, and he started planning my treatment around that option. He didn’t discuss their embryo donation program at all. I know this is partly my fault, because I should have been more aggressive in stating our interest in embryo donation. I am angry at myself for being so easily swayed into following what he was recommending rather than making my own feelings clear. I am sure if I would have tried harder, he would have listened. However, I also feel he should have asked more questions to assess exactly what we are thinking instead of jumping into a treatment plan and assuming we would be fine with it.

I left the office upset at the whole situation. It’s easy to say how “exciting” it is that we are going forward with trying for another baby, or that we have so many options. But really, what is exciting about exploring inferility treatments while still grieving for Madelyn? We shouldn’t even be facing such decisions. Why can’t it be a simple matter of trying again naturally without fear of this happening again? Isn’t it enough that I lost my firsborn child?

Don’t get me wrong, all of this planning and exploring of options has been a positive thing – it has given me hope. Yet, at times it all seems like more than any person should have to carry. I am so tired of making difficult decisions.

——–

After spending most of the morning feeling overwhelmed, frustrated, and emotional drained, I got a call from the out-of-state clinic. They had a cancellation and we are going to do the phone consultation tomorrow instead of March 15. That call was exactly what I needed to refill my supply hope. I hope tomorrow my report is one of excitement and not further frustration.

In Our Hearts Photo Pendants

I am trying to become more crafty, and so I spend some time searching the internet for ideas of projects I might like to do. Most recently I came across several blogs that mention using scrabble tiles to make necklace pendants. Some have used them for photos, others put design patterns on them. As I was reading about how to create these pendants, I started thinking I could create photo pendants for the bereaved. I made my first one tonight, and though it wasn’t without flaws, it was fairly easy to do. I used a 1 1/4″ x 1 1/4″ piece of square wood to make it. I plan to also start experimenting with glass tiles as another way of doing it.

I have ordered some bails (which are metal pieces I will attach to these photo pendants so they can be looped through a necklace). I am pasting a picture below of the photo tile I made tonight of Madelyn. The picture quality is not very good as I just took it from my computer’s camera. In addition, it is not finished (as I mentioned) since I will still need to add a bail to it. I will take a new (and better) photo when I complete it. As soon as I get my glass tiles I will share what those look like as well. However, I wanted to go ahead and share that this is something I want to do for any of my fellow bereaved mothers who are interested. The new blog I have dedicated to this purpose is In Our Hearts Photo Pendants.

————
I have also been asked by several people about how things are progressing with the Grieve Out Loud site. We are still in the process of organizing and designing our web-site. I will share the news as soon as we have a site up and running.

Another baby with a fatal diagnosis

I have found out about yet another mother who is carrying a child who short of a miracle will not survive. This baby has Trisomy 18. Those of you who have been following my blog since the beginning may remember that Trisomy 18 is one of the things they thought was a possibility for Madelyn, but ruled out after her birth. Trisomy 18 is incompatible with life.

I don’t know many more details than that right now. The baby’s name is Madyson. Please keep this family in your thoughts and prayers.

A Local Clinic

I recently discovered there is a clinic in our city that has an embryo donation program. I hesitated to call them, because I had already decided on the other clinic I mentioned a few weeks back. However, I finally came to the conclusion that it is always best to keep options open, so I called them.

Unfortunately, they do have a bit of a waiting list. There are currently 5 people on the list, and they usually move about 1-2 people through the list each month. On average, we should expect to wait approximately 4-6 months to be matched with a set of embryos. It might not be that long, but there is no guarantee we would even be matched within that timeframe. It could be longer.

In spite of the wait, there are some major advantages to using this clinic. For one thing, we would save travel expenses. For another, it would simply be easier if we didn’t have to worry about finding a local clinic to do all of the monitoring and labwork. Finally, this clinic has excellent success rates. Their average for a donor embryo cycle is 55%, but lately they’ve been having success rates nearer to 80%.

This clinic would charge $6,000 plus medications for the process. It is a little less expensive in Virginia ($5,750), but by the time we factor in travel expenses, it would actually cost more. Unfortunately, if the cycles fails, there is no refund or discount on the next try. To try again would cost another $6,000.

They had a cancellation and said they could see me on Monday at 10:15 a.m. I went ahead and accepted the appointment. For now I’m going to keep my other appointment scheduled. The thought of no waiting list is a major draw for me. But if the local waiting list moves quickly, I would definitely prefer to use them.

I will let everyone know how my appointment goes. It feels strange to be updating on appointments again. It feels like just yesterday we were giving our weekly ultrasound updates on Madelyn.

A cure for SLOS?

I recently received an email regarding IVF with PGD as an option for SLOS parents. Of course, we already knew this was an option for future pregnancies. However, what caught my attention was one of the last lines of the email, which said the ultimate goal is to find an in-utero cure for SLOS! In fact, couples who do pursue IVF with PGD can donate (and are donating) the affected embryos to the research center involved in finding a cure to help the cause.

Although I highly doubt the cure will be found in the next few months, I am glad to know that someone is working towards one.

Amelia’s Story

For those of you who are interested in reading and following Amelia’s story, you can find it here. Please stop by and give this family your support.

Prayer request

I recently came into contact with a mother who is carrying a baby girl named Amelia with a very poor prognosis. Please remember this family in prayer as they plan for the birth of their sweet daughter and afterwards. She is 35 weeks along. I feel very deeply for people in these situations, and could not pass up an opportunity to recruit thoughts and prayers for them.

Waiting

I don’t remember the last time I let more than a week pass between posts. However, I simply have not had anything to say that could add to what has already been stated here.

This blog has been my refuge: a place I could come and share anything at all and be immediately comforted both through the act of writing and by the people who read and leave so many encouraging comments. I am sure there are still many posts left to write, especially on those milestone days I have yet to face. However, it seems on most days there is nothing new I can add, and I don’t want to say the same things over and over. If I don’t post as often, that is the reason. It doesn’t mean I miss my Madelyn any less. In fact the opposite is true. Although the pain is not as acute as it was in those initial weeks and months, I continue to miss her more with each day that passes.
==========
==========
In other news, we continue to wait for our March 15 consultation. I have also connected with a couple through Miracles Waiting, so we will see what happens there. I know that if it is meant to work out, it will. Otherwise, I trust God will lead us in the right direction.

Finally, we discovered there is a clinic here in St. Louis that has an embryo donation program. Since they have a waiting list, we probably would not participate as a recipient in their program. However, if we are selected through Miracles Waiting before our consultation with the out of state clinic, it is nice to know there is a local clinic with experience in embryo donation.

I hate this waiting game, but I know all will happen in due time. It is during these times I am most grateful for how quickly time passes!

Discovering Madelyn

A year ago today, I discovered my sweet Madelyn. That morning, I took my monthly pregnancy test, expecting it to be negative like every other month. When I saw the test had turned positive, I did a double-take. I couldn’t believe it.

I had an 8-5 class that day, and all the way to school, I contemplated what was happening. I was excited, but scared it wasn’t real or wouldn’t last. I needed more proof.

During my lunch hour, I went to Walgreen’s and bought more tests. I had planned to test again the next morning, but I couldn’t wait. Knowing fully well the test was likely to be negative (since early pregnancy tests work best in the morning), and knowing how disappointed I would be if it was, I lacked the discipline to resist. So I tested, in the upstairs bathroom of January Hall.

To my surprise and relief, it was positive. Yet I still wasn’t convinced. I tested again the next morning, the next afternoon, again and again for a full week until finally, after a trash can overflowing with test sticks and the results of my blood test in my hands, I released the fear I had been carrying. At long last, I thought this baby was here to stay. How could I have known that even giving birth does not guarantee survival?

It has been a year, yet I still remember so much so clearly. I remember being unable to focus in class that morning. I couldn’t think about building an effective mentoring program (the class content) after finding out a baby was going to be in my life. My head was swimming instead with thoughts of baby clothes, nursery decorations, and a little fear about the birthing process.

I remember thinking I didn’t feel different. Morning sickness and all the other first trimester symptoms hadn’t yet chosen me as their companion. I had expected some type of feeling – the feeling so many say they experience, informing them they are pregnant before they get a positive test. Yet there was nothing except the knowledge I was carrying something very precious.

I immediately changed so many habits in an effort to put the baby first. I stopped eating anything I thought might be bad for the baby. I started driving much more carefully. I made every effort to get plenty of sleep each night and drink the right amount of water. I started walking regularly. Even though it isn’t necessary to sleep on one’s side until 16 weeks of pregnancy, I started doing that too. I would have given up anything for this child’s well-being. Yet I learned all too quickly that it didn’t matter. Nothing I did or didn’t do could save her in the end.

A year is such a short amount of time, but I find it difficult to imagine life before her. She quickly turned my world around. Things I thought mattered before quickly faded to the background. I found myself wanting things I thought I’d never care about, all because of one (or 15) little positive test. I’m still amazed at how someone so tiny could make such an impact on me, but I’m so glad she did.

From OK to Good

For the longest time after losing Madelyn, I could never bring myself to respond to the casual “How are you?” with the words “good” or “fine”. While recognizing the inquirer was merely following the social protocol of greeting me, and not asking me to seat myself on the couch of psychological inquiry, “good” and “fine” seemed much too chipper to describe how I was generally feeling. Instead, I settled for saying I was “ok”, or I would simply avoid answering the question by saying “How are you?” in response without answering their initial query.

Yesterday, I heard myself respond to someone’s “How are you?” with “good”. I don’t know how long I have been doing it, but subconsciously, I must realize I am progressing emotionally. Many days, I really am good. The bad days have not obliterated themselves from my life, but even the bad days are littered with good hours. At first, I resided continually in a chamber of pain I could not escape. Then the pressure slowly began to ease, not in weight, but in frequency. I still remember the first time I truly laughed after my loss: I can tell you exactly where I was and what I was doing. Now, the pain is there, but it is usually muted. I no longer cry on a daily basis. I often even pass through an entire week in which I shed no tears.

I miss Madelyn a lot. In fact, I miss her physical presence in my life more each day. However, there is nothing I can do or undo to change the fact that she only lives on this earth through the words and hearts of those who love her, and I guess I am learning to accept it. This does not mean I am happy about it or would not sacrifice every limb on my body for things to be different. But my arms and legs cannot be given in exchange for her. Even if such a thing were possible, she probably would not want to leave heaven to live on this earth full of pain and suffering. So I am learning to live with her and keep her in my life the only way I know how: by keeping her memory alive, sharing her story, and hopefully by helping others in her honor. As a result, I am moving from “ok” to “good”.