Update

I am overwhelmed with the number of people who need to be updated about our sweet little one as they pray. I have decided to write this blog entry as an update as I am both blessed and overwhelmed by the phone calls.

On Friday, we learned that our little one has suffered some serious developmental complications. Our baby was stiff and unresponsive, and it broke my heart to think this formerly fluttery little angel was trapped in a broken body. The weekend of waiting for a follow-up appointment on Monday was excruciating, and our eyes still burn from crying, but we felt your hope and faith when ours hangs by a thread. We also saw an answer to prayer in the baby’s responsiveness and drastic change in position, which allowed us to find out the sex. It’s a boy! It did my heart good to know that he is no longer trapped in an uncomfortable position. Even as I write, I can feel his lazy late morning movements.

Our time with this precious one is limited, as he has characteristics of either trisomy 13 or 18, either of which limit his days of life outside the womb anywhere from 0 to 2 years (with significant surgical intervention). We have decided to celebrate his short but valuable life by giving him his first name now: Samuel. It means “God has heard.” We will announce his middle name when he is born.

We are overwhelmed with what lays before us. We have multiple doctors and appointments with each, a desire to make Sammy’s little life as comfortable, loving, and joyful as possible, plans for his medical care and eventual homegoing, emotions to sort through, and pickles and peanut butter to eat as I am still very much pregnant and Sam still eats like a little Piglet, as he’s affectionately known. His heartbeat is strong and my appetite is voracious. And every time I start to act like it’s over, Sam gives me a kick or a punch to bring me back to the moment.

I wanted to tell a little story about Sam that I have held in my heart since it happened. A few weeks back, I took communion at church. Before the bread could make it down my throat, he was dancing and fluttering like he never had before. There was a big celebration going on in my womb, and I am sure Sam’s spiritual responsiveness brought a big smile to God’s eyes. This is who I am carrying. This is his life.

As we walk through this portion of Sam’s life, we are grateful for your prayers. Pray for his spiritual protection, his physical comfort, and for this miracle: that we would have time to love on our precious baby before he goes home. Thank you for walking with us in this joyful and sorrowful time.

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13 thoughts on “Update

  1. Hi, I’m one of your SIL’s friends, and I have been praying for you, your family, and little Samuel. I’m not sure if she has told you a little of my history, but I feel the need to reach out to you. See, I have been in your shoes, not the exact same shoes, but a close fit. Your SIL and I were pregnant together in 2001/2002 and I learned about half way through that my little boy had issues. I was told, very soon, that he would not live, he’d be so mentally and physically delayed “it wouldn’t be worth it” .. and it was highly suggested to me that I “interrupt” the pregnancy. But I looked that genetics DR in the eye and told him that wasn’t an option, that I would take whatever time I was given with him to love him and cherish him. See, my little Noah has Mosaic Trisomy 16. The extra chromosome isn’t in all his cells, but it’s there. Noah was 1lb 12oz when he was born at 33 1/2 weeks. It’s not the same genetic disorder as T13 or T18 but it’s a close cousin. So I wanted to let you know, if you need to email me any time for any reason to please feel free to. I also think it’s important for you to watch the video 99 BALLOONS, it’s on Youtube, just search it. It’s a video that a family put together for their child, Eliot, who had Trisomy 18. How they cherished and celebrated everyday of his life. It’ll make you cry, grieve, and it’ll touch your soul. I can only send you my love, prayers and understanding. {{Hugs}}

  2. I’m sure I don’t have to tell you that I’ve been praying for you guys since the minute I received a message about Sam’s situation on Friday. My heart has been so heavy for your little family these last few days. I am here to walk with you during this time. Please let me know if you need anything, even if it’s an ear to bend with your emotions.

    As I was pondering this difficult circumstance and the precious life you are carrying, I recalled reading some similar stories of courageous mommies and daddies at http://namingthechild.com/. Perhaps they will be an encouragement to you at some point, though I realize today might not be that day.

    I’ll check in with you soon. I know you are inundated with questions, appointments, phone calls, and other various activity right now.

    Treasuring Baby Sam with you,
    Becca

  3. Megan and Steven,
    Your strength right now encourages me. Your family and health are in my prayers. Miss you guys lots!
    Love,
    JennG/Muzzah

  4. Dear Steven,Megan and baby Sammy

    We want to send our love and prayers for all of you. We pray for a blessing from God,for all three of you.Just know how much you are loved by both of us.

    We are here for you always.

    With all our love,

    Grandpa and Grandma Bonham

  5. We have not ceased praying for you since we caught wind of the circumstances. May God encourage your hearts and give you all the comforts His love provides.

    God keep you.

    N+J

  6. Megan,
    I am so sorry to hear your news. I was amazed by your faith as I read your blog. “Consider it all joy, my brothers…” but I know it still hurts anyway. We will be praying for you & Steve and for Sam.
    Tiffany Wismer

  7. Psalm 103~
    Bless the LORD, O my soul, And all that is within me, bless His holy name. Bless the LORD, O my soul, And forget none of His benefits ; Who pardons all your iniquities, Who heals all your diseases ; Who redeems your life from the pit, Who crowns you with lovingkindness and compassion ; Who satisfies your years with good things, So that your youth is renewed like the eagle. The LORD performs righteous deeds And judgments for all who are oppressed. He made known His ways to Moses, His acts to the sons of Israel. The LORD is compassionate and gracious, Slow to anger and abounding in lovingkindness. He will not always strive with us, Nor will He keep His anger forever. He has not dealt with us according to our sins, Nor rewarded us according to our iniquities. For as high as the heavens are above the earth, So great is His lovingkindness toward those who fear Him. As far as the east is from the west, So far has He removed our transgressions from us. Just as a father has compassion on his children, So the LORD has compassion on those who fear Him. For He Himself knows our frame ; He is mindful that we are but dust. As for man, his days are like grass ; As a flower of the field, so he flourishes. When the wind has passed over it, it is no more, And its place acknowledges it no longer. But the lovingkindness of the LORD is from everlasting to everlasting on those who fear Him, And His righteousness to children’s children, To those who keep His covenant And remember His precepts to do them. The LORD has established His throne in the heavens, And His sovereignty rules over all. Bless the LORD, you His angels, Mighty in strength, who perform His word, Obeying the voice of His word ! Bless the LORD, all you His hosts, You who serve Him, doing His will. Bless the LORD, all you works of His, In all places of His dominion ; Bless the LORD, O my soul!

    May you find joy in the midst of sorrow and continue to praise the Lord in all things. You, Steven and your little miracle are in my prayers!

    Much love, Emily & Andy Dozier

  8. Megan, My heart aches for you and Steven and your family. We are going through some really tough stuff here lately but I can’t imagine all the emotions you are going through. Cling to truth, let God love on you and let others love on you. What a special gift Samuel is to you and those around you but especially to his Heavenly Father. He is so loved by God that he wants to enjoy him so soon. How much your Father loves you to bless you with Samuel, to care for him, grow him, love him and then give him to his Heavenly Father. His Mercies are new everymoring, and lately I have been claiming them every minute. Please know that I will be praying for you, Steven, Samuel and your family. God is so faithful, and He loves us so deeply , may you rest in His arms of love. Judy

  9. I’m a friend of your aunt Beverly’s and know your sweet mom and dad. I am so sorry for what you are going through. We lost a little son after 19 days in PICU 14 years ago and I am very familiar with the pain, sadness, and longing that you are facing. There are blessings, too, and it sounds as though you already know that. I will be praying for you with all my heart and trusting that God will provide all you need to walk down this road. He will! And…you will see Samuel again.

  10. Megan, all of the courage and love you gave me over my college years I can only imagine how much love and courage you have and will have for your sweet baby boy Sam. He is blessed to have you as a mom, God has chosen you, entrusted this sweet joy in your hands because he knows you, and he knows Sam. God Bless each tear cried, each broken piece, every sleepless night, and may the painting that he paints be the beauty beyond imagination! My heart is full! I am so very sorry. I pray God will continue to guide your family through this challenging situation. If there is any other way we can be helpful in this time, let us know. I know how challenges and circumstances can make us feel so alone and feel like you’re living in seclusion, so hang in there….I love you!

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