July 2012 update

Dear Friends –

What an exciting month we’ve had, full of happy memories. This month we were blessed with two ultrasounds. On Monday, July 2, we had our typical ultrasound and doctor’s visit. During this ultrasound, we were happy to learn that Amalya has small tufts of hair on the side of his head just below his ears! This was a shock to us since he does not have much skull. His organs were all functioning well, and he is continuing to grow at a typical rate. On Saturday, July 7, we were very blessed to have a 3D ultrasound. This was provided by a non-profit organization called Sustaining Grace. The point of this ultrasound was to give us some time to bond with Amalya without having to critically analyze him medically, but rather just enjoy seeing him as our little boy, alive and well. During our 25 minutes, he put on quite a show! He moved all over, waving his arms, blinking his eyes, and he even stuck out his tongue. The ultrasound revealed that he may have more forehead then we originally though, perhaps up to an inch above his eyes. It also looks like the back of his head may come up to the middle of his occipital bone (where you feel a bump in the back of your head between your ears), which is again, much higher then we originally thought. We obviously won’t know anything for sure until he is born. Over all we were just excited to see our little guy, spend time with him, and fall in love with his chubby cheeks.

As stated before, this month was FULL of memory making. A few highlights include kayaking (Eric did most of the work), going to a Dayton Dragons and a Cincinnati Reds baseball game, and celebrating the 4th of July watching fireworks at Riverscape with family. We also spent an afternoon having a picnic at one of Eric’s favorite childhood parks. We treated Amalya to his first McDonald’s Happy Meal then played on the playground at the park. We like to guess that the swings were his favorite. We were able to bring Amalya to his first concert where we saw Christian artist Michael Card perform. One of the best highlights (other then the ultrasound) was Amalya’s 24 week “life day party”, a celebration in lieu of future birthday parties. The party was complete with streamers, big balloons, and a huge cake with special decorations. We were blessed to celebrate with many friends and family.

This month also brought further planning for Amalya’s arrival and departure. Many of you have asked us questions about some of our plans, specifically if we have considered organ donation. The answer is yes, not only have we considered it, we have spent a lot of time looking into options. Sadly, due to federal and Ohio legislation, organ donation is greatly restricted for babies with anencephaly. The only possible donation would be a heart valve donation if Amalya weighs over 6 pounds after he is born. No other organs can even be considered. Unfortunately, due to the missing part of his skull and brain it is unlikely that he will meet the weight requirement. We have also looked into donating his body to science for medical research or education. So far, we have been unable to find an organization who will accept an infant cadaver. We do not share these things to be gruesome, discouraging, or debate people’s views on organ donating or cadaver labs; rather, we want to share that we have tried our best to allow our son to be used by the Lord in everyway possible. At this point, we are unsure of how the Lord will choose to use Amalya after he passes, but are open to whatever that might be.

We have been blessed this month by seeing the Lord’s provision in our lives. He has richly blessed us with family, friends, and some amazing memories with our son. We are continuing to learn how to fully rest in the Lord’s goodness, rely on His grace, and trust His ultimate purpose for our lives and Amalya’s situation. We look forward to what the Lord has for us in the next 9 weeks. We ask that you pray for endurance and peace during the weeks to come.

With hearts fully blessed by His goodness, Eric and Bethany

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Comments

July 2012 update — 3 Comments

  1. This is such a powerful witness to your faith and love of the Lord. Thank you for sharing with all of us at such a difficult time.
    You may already be aware of a group called Now I Lay Me Down to Sleep (http://www.nowilaymedowntosleep.org/) this is a group of professional photographers who specialize in photographing the dear babies that depart this life too soon. They will give you some beautiful pictures of your son.
    God Bless you all.

    • Thanks, Eileen! Yes, we are familiar with this group. We’ve already set things up. The photographer in our area is actually a friend that our daughter went to high school with. Love how God works together things like that 🙂

  2. Eric and Bethany,
    As you talk of wanting to allow Amalya be used by God in every way possible, I feel you must know that sharing his journey in this way that we can share with others is a mighty witness to the glory of God and testament to his life given by God. I have two friends that have lost grandchildren, one to miscarriage and one lost twins within 24 hours of their birth. I am able to share your story with them and their families which I’m sure is encouragement. Sending love to you both as you walk into the next chapter of your lives.
    In His Presence,
    bj