2-10-17

I’ve delayed writing this for weeks. Mostly because I’m horrible with my words, and even more horrible when my words must encapsulate my feelings. Most of you know, my husband Mikey, is much more gifted in this area. Anyways, last October, Mikey and I announced that we were expecting the gift of a baby Puckett in April 2017. We were absolutely thrilled(even if it meant we had to cancel our Mexican vacation), as I had been very insecure about my ability to get pregnant due to some personal/medical issues. God had truly blessed us!

 

I will never forget our 20-week appt, which included a gender reveal! We were so excited to see our little one. Our ultrasound seemed to go great. The tech took all her images and showed us that we were having a sweet little girl!!! We recorded her heartbeat so we could listen to the soft rhythm over and over. After our ultrasound, we waited in an exam room to meet with my doctor. The door opened, and she walked in with a very serious face and got straight to the point. She explained that the images they took, showed something was very wrong with our baby girl’s development. She started by explaining her head size was measuring 3 weeks behind, and that it looked like her brain structures were not developing correctly. She continues stating, that in addition and in direct correlation with the brain abnormality, she had a cleft lip and palette. “Holoprosencephaly”, pronounced, HOLO-PROSE-en-SEFully is what she said the condition was called. My heart began pounding into my throat. She was only two feet in front of me, and Mikey was sitting a few feet away in a chair, but as I sat upright on the exam chair in the middle of the room, I felt so alone, so devastated. I felt as though I was stuck on an island in the middle of a stormy ocean, and miles away from my Mikey, whose face, at this point had turned a shade of grey I’ve never seen before. Shock and unbelief had hit us both like a brick wall.

 

To speed the story up, we almost immediately met with a paranatologist, to confirm the suspected diagnosis. It was confirmed later that day, she indeed had the condition, but it was too early to confirm which degree of the condition she had. There are three main types of the condition, going from less severe to the most severe, which we were quickly informed can look extremely different from child to child. They were not 100% but they thought she had one of the two lesser severe degrees. We were told to come back later once she was bigger to have another ultrasound, and a fetal MRI to confirm which degree she had. We had so many questions, and due to the rarity of the condition, they didn’t give us many answers. They did tell us that due to the gestational age of the baby or “fetus” as they referred, we had to make the decision on whether to terminate or not pretty quickly, due to the laws in Missouri. I will not lie and say the thoughts didn’t cross my mind as I was bombarded with this devastating and frightening news, however, Mikey and I immediately told the doctors we wanted to keep the baby, no matter the circumstances. We didn’t know the outcome of this pregnancy but we knew God was sovereign and her life was meant for something! I could go off on a tangent about this personal experience with “termination” as the doctors said, and the need for compassion and love for other women who are faced with the same difficult decision, but you can ask me about that later.

 

Mikey and I came home that day, as completely different people. We cried, and cursed, yelled, and cried more. I can’t explain the multitude of emotions that flooded my mind. I hope you will read Mikey’s emails that are also posted on this website, as these display our emotions throughout the process very well. The days following that appt were the most difficult days I have ever experienced in my life and I know Mikey feels the same. We were angry at God, and so confused at what was happening to our precious girl. We questioned his love for us, and even felt like he was making a mockery of our love for each other. Our selfishness and sin became SO apparent during this time as well. We knew the truth in our mind, that God loves us and his plans are good for our lives, but we didn’t believe these truths in our hearts. We prayed to God with our honest and raw emotions. I described it to a lot of people that I felt as though I was mourning the death of our baby. The baby girl and future with her that I thought I was going to have, was snatched out from underneath me. Thankfully, due to the goodness of God and our wonderful family and friends, people immediately came around us, to love us and pray for us. And we felt it. When we felt like we couldn’t pray, we knew people were praying on our behalf. Being a part of the “body of Christ” and kingdom of God has never felt more real. They came around us and loved, listened, spoke scripture, and prayed. We only made it through this time because of God’s grace and those people!

 

Now for our most recent news…The last week of January I had my MRI done and we met with the Dr later that day to discuss and hopefully get more information. Unfortunately, we were not given news we wanted to hear. Based on the MRI images, the doctors have diagnosed her with Alobar Holoprosencephaly, which is the most severe of the three degrees. He immediately followed this up by saying that these babies don’t normally survive birth or much longer after birth, due to their severely compromised brains. Again, our hearts were broken. Our hopes and prayers of healing for our sweet girl were not answered. This is very recent news and to say we have accepted it, would be a lie. However, when I say we felt different this time around, I don’t know how else to explain it, other than God is graciously working and changing our hearts. When leaving this appt, there were of course tears, but also an overwhelming feeling of gratefulness. We felt sad, but SO thankful for her life and the blessing it had already been in our lives. We don’t deserve this blessing.

 

We know the coming months will be even harder than the last, but we are clinging to God’s promises of faithfulness to us. We are also leaning heavily on those around us. We are not strong enough on our own. I cannot say enough wonderful things about Mikey. I am so thankful for him and how he has lead me in this process. He has been my rock and I thank God for him everyday. He has given me the space to be mad, sad, frustrated and even numb. I love him.

 

We love Blakely dearly and are cherishing all her kicks and punches right now. She is ALIVE right now and we are clinging to this blessing! We are uncertain of the future but we know for sure her life is not in vain. She has been used by God to touch our lives, and she is now a part of our life story.

 

Thank you for listening, or reading my rambling! I encourage you to browse through Blakely’s website and read through Mikey’s emails. These are email updates he sends to people that are praying for us and we will continue to post these on the website as we move forward!

 

-Emily

44 thoughts on “2-10-17”

  2. Hi Emily. I am so sorry for what you and Michael are having to go through. As I’m typing this tears are pouring down my face because you do not deserve this. But knowing you the way I do you will definitely find all the blessing from this experience. I will be praying for you and Mikey for comfort and understanding. Much love to you.

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  3. As im reading this I stopped when i read the word fetus and it took me back to nursing school. I remember when we were in OB and the professor took me, Claudia and YOU(Emily) to the back where we could see where they made things for babies who didnt make it and how you expressed your disdain for the word fetus and how you wanted to make a difference in the lives of future mothers. The compassion you shared as you touched the baby clothes that were neatly layed on the counter showed me that you would become an awesome nurse and an even better mother!!! Emily you are the epitome of a wonderful person and I have no doubt that you WILL be an amazing mother. Just want you to know that im praying for you, your hubby and Blakely and that the excitement that Blakely is expressing in your womb is one the screams “Im stronger than they give me credit for and further more that Im not a fetus… Im Blakely b***h!!! AND MY MOM HATES THE WORD FETUS SO STOP CALLING ME THAT!!!” So from my heart to yours just know that you have an Army behind you friend and that you indeed serve an awesome God who knows your heart and whom is meticulous in all of his decisions.

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  4. Thank you for sharing your journey thus far. Please know I will begin praying for your pregnancy with my wife and we know the Lord will meet you in Crystal River, just as he has already. In times of sorrow, these words been my comfort: “The Lord is near to the brokenhearted
    and saves the crushed in spirit.” Psalm 34:18. May God bless Blakely during her time with you!

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  5. You don’t know me Emily, but I went to school with Mikey. My husband and I just wanted to let you know we are praying for you continually. We are currently going through our own pregnancy battles with severe diagnosis. And let me tell you, your story has already inspired us. Her life is NOT in vain. She’s already doing amazing things. We can’t relate to the extent of Blakelys diagnosis, but we understand how you’re feeling. Just wanted to let you know that we are thinking of and praying for the three of you and that God works a miracle. But knowing He is still good through it all.

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  6. Emily, your story is a lovely one, and I am so glad you shared it. My prayers for blakely will be fast and furious. My prayers for you and mikey will be for continued faith, healing and strength as you enter this uncertain time. What a blessed treasure blakely is. She will bring you both so much love and growth no matter how long she is physically with you. Much love to you. (I don’t know if you remember me- I went to care management right after you started at Luke’s) – erin

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  7. There are no words to convey my sorrow for what you are feeling and going through. Please know my prayers are with you and your baby. I know without a doubt that God hears and answers the prayers of his children.
    I am believing for a healthy, completely normal in every way. baby to be born to you. God bless and heal the baby from head to toe in Jesus name.

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  8. Emily, I have never met you, but I am thankful you are finding God’s presence in the midst of this agony. I don’t know who told you that you were horrible with your words–because that is just not true. You expressed your heart clearly. I’m so sorry you have to walk such a path, but I can see how you are pressing on in the midst of it.

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  10. Emily, I don’t know you ,but I understand what you are going thru. My son and wife was five months pregnant with a boy. They were told that he had CVS and wouldn’t live to go home. He was severely em paired, blind deaf cp no brain , but they chose to keep him. He lived to be 15 yrs old and we loved him with all out heart. He was a loaned Angel from God.when his job here was done he went home with all the other Angels. So love Blakly , God is giving her to you for a reason. God. Bless your family. I hope this can help you a little.

    In Christ, Ann Watson

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  11. So sorry for your news. May you and Mike know the peace that only God can give and feel the comfort of your heavenly Father’s arms around you.
    Friends in Christ!

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  12. Oh Emily.. I do not know your family. For some reason you stumbled upon my FB wall. I don’t want to claim to know what you are feeling or thinking. But I do want to learn you an ear or shoulder if you need one. You see I too had a baby with the same exact diagnosis. My story was alittle different then yours. But in the end our babies have the same diagnosis. I unfortunately only had a day to process it. God knows his plans for us and he will help you threw just lean into him and ask for guidance he will answer you! I will be praying for you and your family. God bless.

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    1. Sweet friend thank you for these words. Thank you for sharing your life with our family. Thank you for encouraging us and praying for us! This stuff is hard but it is good to know that people have been where we have been 🙂

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  13. I just read your story and wanted to share a bit of my own. In 2000, at a 33 week gestation ultrasound my baby was diagnosed with extreme hydrocephalus (water on the brain). Simply explained, the ventricles in her brain had not formed correctly and therefore the cerebral spinal fluid in her brain did not have a way of escape. The enlarged ventricle and exaggerated amount of fluid not only caused her head to be abnormally large (54.5cm at birth), but did not allow room for her brain to develop. We were told at a follow up ultrasound with the neurosurgeon that she would most likely not survive the birth and would have little to no brain function if she did. It is now 16 years later. The road has been long and hard, but rewarding. She is not “normal” but can interact, smile and sign that she loves us. She blows kisses and is always content, pleasant and happy. I wish you and your family the best. Only God knows the path your future will take, but travel it with faith, hope and love.

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  14. We are still so heart broken for you guys. Praying for sustaining grace to breathe, to enjoy her and to rest in Him. Thank you for this blog, you guys are teaching me about the face of God.

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  15. Emily – I just want you to know that I am praying for you right along with everyone else. I have watched you grow up and become this amazing godly woman and I know that God will work through you to touch so many others! I promise you that I will be lifting baby Blakely up in prayer every single day. I am truly so very sorry that you are facing this trial. Just remember that God is Good ALL the time and ALL the time God is Good.

    I know we haven’t seen each other in a very long time but I just wanted you to know that you’re in my thoughts and prayers. Love you Em.

    In His Love,
    Emily Connor – Lewis

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  16. Remember always that God is the great physician. When we are granted the right to be parents, we accept the good times and bad times our children may have. This is inside and outside the womb. Always look to Him because He is Blakely’s Father and will do right in His eyes. Love you all!!!!

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  17. Emily and Mike: Just read the full story and am inspired by your honesty and faith. Your devotion to Blakely and your love for her are so beautiful. God is in this, all of it. We love you. George

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  19. Praying now for you, Mikey and sweet Blakely. Just spent the weekend with Scott and Laura in Va. for Aunt Helen’s funeral. Was not aware of the diagnosis until yesterday😢🙏🏻 Thank you for sharing your heart . You are a blessing!! Sending hugs and prayers!
    Cousins: Kagey and Lois Barrow

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  22. Emily and Mike.
    Reading Your story made me realize that sometimes we take things for granted, but lesson learned from a friend a classmate. It’s my prayer that God above continues to give you both wisdom, patience, loving, moral support and courage during this period. We believe everything happens for a reason. I will continue to pray for your entire family. Your story has taught me a lot. Lets all trust GOD.
    from Martha.

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