Trisomy 18

On Wednesday, a new reality sunk into our lives.  We went in for a level 2 ultrasound to see if our little peanut had a cleft pallet.  We were told at our original 20 week ultrasound that there was a “shadow” on the lip and they wanted to look into it further.  We were also told that baby was in less than 3rd percentile for weight and had cysts on the brain.  Both sound scary but after researching and talking to some doctors we realized that the cysts usually always go away by birth and since we have smaller babies anyway, the weight should even itself out.  A cleft pallet was hard, only because you don’t want your little babe to go through anything they shouldn’t have to.  Surgery on my baby is not at the top of my list.  After having to wait a month to have our level 2 ultrasound, and a lot of prayer and peace about it, we braced ourselves and were ready to see if peanut would be born with a cleft pallet.

As we were getting our ultrasound I was so excited to see little babe in the womb.  Baby was so cute as always, and our technician had told us she was going to be super thorough on this ultrasound, from head to toes and boy was she ever.  She came to the head last, and indeed we found out peanut would be born with a cleft pallet.  My eyes watered over and Ry squeezed my hand, but we were prepared for this.  Surgery is amazing and so many people told us you would barely know.

Baby is laying on it’s side.  Even at 1 lb and 4 oz you can see the chubby little cheeks.  Taking a little rest now with it’s eyes closed and under it’s nose is a dark spot.  On baby’s upper right lip is the cleft pallet.

Then the doctor came in.

A doctor we had never met before came in and shook our hands and said, “I’m very concerned for your baby.”  I was thinking the same thing, poor thing was gonna be born with a cleft pallet which would mean a feeding tube, no nursing at first, surgery within the first year of it’s life.  We’ve never dealt with anything like this before.  But then I sensed that wasn’t what she was talking about.  And soon our world came crashing to a halt.  I don’t remember much after this point.  She just starting pointing out one thing after another.  Your baby only has 1 kidney, there is possibly 2 holes in the heart, the line in the brain does not have an opening which means the right side and the left side may not be connecting, babies hands are always clenched and aren’t opening up, it has a cleft pallet, it’s weight is low.  I mean how much can a mom take at one time.  And it just didn’t stop.  I looked back up at the screen at what seemed like a perfect little baby in my eyes.  Lord, we were just supposed to be coming in to see if baby had a cleft.  I didn’t prepare myself to hear this.  How could you???

And after the list was done she told us, it doesn’t look good.  All of these signs are pointing to a genetic disorder called trisomy 18 (a genetic disorder in which a person has a third copy of material from chromosome 18) or trisomy 13, (a genetic disorder in which a person has three copies of genetic material from chromosome 13, instead of the usual two copies.)  And she went on.  Most babies die inutero with only 10% making it to their first birthday.   Ryan was so strong for me.  I think he knew I needed it.  He somehow was able to listen while my mind blurred and I couldn’t hold in the sobs that kept escaping.  I was not prepared for this.  But, she said….there are options.  And continued to tell us of a great man that use to deal with these “situations” that was killed in a church.  Ryan wasn’t quite sure what she was talking about but I knew right away.  She was talking about the doctor who performed late term abortions.  Dealing with the situation meant killing my little baby.  My mind was numb but was at least able to say that that was not an option for us.  Even though my head was whirling as to what this little baby would be like?  Would it even look normal??  Could I handle this news??  It’s all too much.

and I kept seeing this on the screen above us..

My precious BABY GIRL.  We weren’t going to find out the sex but it just seemed right now.  A little girl, Kynlee would be so happy.  She wanted a sister so badly.

We then went across the hall to talk to the genetic counselor who asked if we were going to “continue on with the pregnancy.”  I just still can’t believe that’s an option.  She told us a little more about the chromosome disorders and I think she explained it, although all I remember were the words, setting up hospice care if the baby is born, funeral planning and talking about getting an amniocentesis to run the genetic tests to make sure this is what we were dealing with.

I dont really remember the drive home.  I had a headache by the time we went to pick up the kiddos.  We tried to call close family and friends and fill them in.  The emotions were so raw.  When we got home we told the kids that the baby was a girl and that she was sick.  That she might not come home to live with us, but instead might go to live with Jesus.  They shook their heads and two minutes later Kynlee brought the pictures of lil girl and said, is this baby!!!  Can you show me!! There is something so precious about the innocence of children.

I can’t lie and say that my mind didn’t start whirling like crazy.  Lord, I can’t do this.  I can’t be a mom to a super special needs baby.  This will change our lives forever.  This is too much.  My prayers were please take this little girl now so I don’t become more attached, so that I don’t have a baby that I have to say goodbye to after a year, so that I don’t have a baby that I need to be a constant nurse full time for the next 5 years of my life.  It’s amazing how human nature takes over.  And sad.

That night I started googling like crazy.  I wanted to know what we were up against.  After leaving the doctor there seemed like no hope.  They told us that we can doctor with our normal doctor since there is no special treatment needed.  They can do the same thing for us that they would at Children’s.  Basically wait for your baby to die.  I told the Lord, God please take this baby now if you are going to so I don’t have to go through this anymore.  Just take her fast.  And then I found pictures.  So many pictures of kids with Trisomy 18 and 13, also known as Edwards Syndrome and Patau Syndrome.  And what I couldn’t believe is how normal they looked.  They were precious. My prayers started to change.

These are some of the symptoms of Edwards Syndrome….

and here’s some faces of it…

Wednesday night we went to bed and Ry prayed over my belly and for this little girl.  She was kicking like crazy and Ryan could feel her.  It was almost as though she was telling us she’s alright.  I’m a fighter mom and dad.  My eyes could barely open anymore and sleep didn’t come that well.

Friday Ryan and I went in for an amniocentesis, where they stick a needle into your belly and extract 2 tablespoons of fluid from your amniotic sack to get the babies old skin cells that have flaked off.  They tell us they will have the results in 10-14 days, a long time for this mom to wait.  I can’t tell you that I’m all too hopeful for these results.  With the list we got I’m pretty sure it doesn’t look the best.  I was excited to see little girl again though.  She seems like such a fighter!  I have to tell you that one of the hardest things about this process is feeling her kick.  I try to run from reality but every time I feel her kick I am brought right back to it.  But there is no easy answer.  When I don’t feel a kick after an hour or so I start praying like crazy to feel one.  She usually obeys:)  What a sweet girl.  I’m praying the Lord gives me strength during this waiting game of not knowing what is going to happen.  How long I’m going to get with my little girl.  Because He does know.  And she wasn’t an accident.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

Psalm 139:13-16

Prayers have been holding us up during this time, and I thank you so much for them.  I can already see the effects of them.  Thursday after we got the news I got a call from a doctor at my clinic.  My doctor was out of town and he was taking her calls.  I found it quite amazing that another doctor would want to take this call.  And soon I found out it was more than amazing, it was Jesus taking care of us.  This doctor just happened to be a deep man of faith whose first words were, “I think you know why I’m calling, and I just want to offer you my deepest prayers.”  I could tell he was sincere.  He proceeded to say that him and his wife have 3 beautiful blessings but they lost one baby at 18 weeks.  He knew the pain of losing a child but still didn’t pretend to know what we were going through with this circumstance.  He allowed me to ask questions and I just wanted to know from a Christian doctors perspective, what would you do?? If this were your baby??  He said what a privilege it is to know that we know God has a bigger plan, and a better place than we can imagine.  That he would love on this baby as long as the Lord gave  him and let this baby join Jesus at the right side of the throne of God when the time came.  *sobs and tears, but it’s so true.  We as Christians can have a peace about this.  It doesn’t take away the pain, but it makes it easier knowing they are going to a much better life.  After telling him thank you so much for the phone call that I believed was not a “coincidence” and him asking if he can put my husband and I on their prayer chain, we ended the chat.  God is good.

We have also been flooded with emails, text, messages, visits, phone calls, gifts, food, and love that is so amazing in the body of Christ.  Thank you to everyone!!  Here are just a few beautiful gifts we have been blessed by in the few shorts days we have been delivered this news…

and a fridge full of food…

So I’m writing this blog part as grieving and therapy for myself, part to keep the story straight for everyone who heard about it, but mostly for prayer.  Prayer for this little baby girl.

Ry and I decided to name her and amazingly I had my girl name picked out from the beginning.  After I found out about baby girls condition I hate to admit it but I wasn’t sure I wanted to use my girl name on a little girl that may not be with our family long.  Selfish.  But the more I thought about it the more I realized the name was meant for this little girl.  So Ryan and I just ask that you join us in prayer for this little girl, Juliet Faith..that we like to call Jules:)  Pray that she makes a huge difference for Jesus.  That she is used by God as well as her story.  That through it all God receives the glory.  And that she is strong because selfishly as well I want to meet her and see her beautiful face!!

I’m gonna leave you with this you tube video that a friend actually showed me a few years back.  I cried then when I watched it but had no idea it would come back full circle.  I wouldn’t have even remembered what the little boy suffered from had we not gone through this.  I think it is just an amazing testimony to Jesus and pray Jules will be as well!

Thank you for your love and support!

The LORD gave and the LORD has taken away; may the name of the LORD be praised.

Job 1:21

 

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70 thoughts on “Trisomy 18”

  1. I used Bing to find your page. Thanks for sharing your story.

    My wife Becky and I are going through this trial right now, though we did not do the amnio test for Josiah Gabriel (our second son). She is at 33 weeks and we’ve been standing on the Word of God that Jesus finished Josiah’s healing on the Cross, we are praying for it to manifest here in the physical.

    We’ve got our whole church praying and have both been working at renewing our minds through focusing on the Word. This is literally the hardest thing I’ve ever had to go through. I know it’s been a few years, but would your husband be willing to reach out and have a chat on his experience? As a dad, I’ve got more feelings on this than I can share, just looking to find a dad that can relate.

    1. I am so sorry you are going through this. It is the hardest thing we have even been through, but also the best experience at the same time, as we saw God work in so many different ways, even though not all of them were the way we would have chosen. My husband would definitely chat with you. If you want to email him at rtl@mmm.com then he will exchange phone numbers with you and you guys can talk. I will be praying for you and Becky and sweet little Josiah!

  2. Allie,
    I am experiencing the same thing with my unborn baby boy, Benjamin. We are at 21 weeks right now. A friend sent me the link to your story and we have much in common. It’s been a few years since your blog and I wondering the outcome. Thank you for your strength and courage to write about this.

    1. I am so sorry to hear about this Joye, but I am happy to tell you that we did get to enjoy 38 bittersweet days with our sweet juliet faith at home. And although it all seemed so hopeless, she has blessed our family more than we ever thought. She is still a huge part of our family. The kids talk about her all the time:) I mix up my new baby girl ruby with her name just like she was still here:) It was one of the hardest things we went through, yet God chose to bless us when we praised Him through it! Praying for you this morning…and lot of hugs. Feel free to email me at alliemay425@gmail.com if you want to connect more! xoxo

  3. Allie, I sat down to catch up on my blog reading after being out of town for the week. I now sit here with tears rolling down my cheeks and prayers rising from my heart. I am deeply grieved for you and Ryan as you walk through this trial, but at the same time I am deeply encouraged by your resolve to cling to Jesus and bring Him glory. Your precious Jules is being perfectly knot together for her Heavenly Father’s purposes. She is already bringing Him much glory. I have a little one, whom I’ve never met, with Jesus. I pray that your little fighter will indeed fight and that you will see her beautiful face. I am praying for God to cover you with His grace and mercy, now and in the coming months and years. “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.” I pray you are overwhelmed by the comfort from our Father of mercies. Know that I will continue to pray for you and beautiful little Jules.

      1. Theresa Williams

        Ryan, Allie, Tate, Kynlee, & Juliet Faith,
        Miracles happen around us everyday. I never read facebook. Today I knew from your link in my email I needed to read it. It has moved me and I have spent hours praying I can say something that helps your wonderful family on this incredible, but painful, journey!

        I have worked with terminally ill children and their families for years. It was my lifes passion. I know several things from that association. They are hand picke by God for a very important job. They are the best of the best in families and parents. The gift God gives them is his most delicate, most prescious, and yes most beautiful children who have prescious little time on this earth but every moment matters. What a gift from God that he picked your family for Juliet! It is hard to see pain as a blessing but she will do more in her lifetime than any of us accomplish in decades.

        Never let anyone say she is not beautiful! I love that you went and looked at fhe faces of trisomy children and saw the gorgeous children. All children with birth defects because they are not from trauma are beutiiful if we can just change our description of perfect as made in God’s image. It is so hard to surrender to God’s plan but truly going with the tide and not resisting is truly putting yourself in God’s timeline and plan and saying that you will allow his will to be done. It then becomes less of a burden. You are an instrument of him. He is in charge. You do not feel so helpless and your loss of control is taken on by God and his love. Her story is already changing lives. I call it crossing paths.. you cross paths and impact people but you see 10% of the impact. The ohter 10% is silent. Mothers think of you and read their kids a story or stop and answer their questions because your story reminds them they are blessed.

        Allow yourself the time to grieve over the baby you were pregnant with and lost– that normal baby that was so deep in your heart.. and then realize to fill that hole God gave you this wonderful special child to fill your days and gaps and to make you all stronger and more grounded in what really matters in life. We set to much importance on material things when the really important things are right in front of us.. our children.

        Surround your family with memories of Juliet and what she does do.. impact others.. the visual differences are so people notice and so flaunt her beauty. Treasure every hour God gives you. When he takes her celebrate her entry into heaven knowings she is an angel and has not left but ascended to her new job. If you allow yourself you will feel her impact always. She will not be gone.. just waiting the day you reunite. Make sure she tells stories of how she had the best family in the world. It will be her turn to speak and yours to listen. Till that day talk to her.. tell her about her brothers and sisters, her dad, her family.. tell her about God and his power and your blessings.. she will hear you….

        Keep reaching our and sharing. People are listening who are in pain and your story will give them comfort. I teach nurses to take their faith to work. I pray for you and Juliet that you have nurses who care and witness to God. Those who embrace her beauty and share in the joys, not the pain. You are aware of the problems so tell them you do not want others to grieve.. you hav already done that.. now you embrace God’s gift .. you may want to take the faces of those children with you and keep them at your bedside adding a picture of Juliet after she arrives.. the faces of Gods special children. Allie how often are you asked by God to nurture and protect an angel.. how awesome is that role… I am blessed to be your aunt.. let me know how I can help. Your family will be in our families prayers daily.

        Your aunt Theresa and family
        JT & Briana
        Heather, Marchae, Jessica, & Natalie
        Carrie, Victoria, Tiara, Janae, and Maki
        Todd & Ashley, Quedariious & Mariah
        Jasimine & Rod and Janiya

        1. Theresa,
          First what a sweet surprise to hear from you! And second what a sweet surprise hear Jesus through you!! We have been so blessed by everyone’s prayer and support and I was just telling ry that I am just so thankful for it because sometimes in our darkest hours it’s hardest to pray or know how to pray, therefore we have been relying on the prayers of others. We read your comment together and cried together and yet found such joy and peace with the wisdom you shared. What a treasure. The Lord is good and meets us right where we are at, through great people! Many miles away we love you and are living off the words you spoke, we are living this precious gift everyday!!

          Love to you all,
          The Lundeens:)

  4. Allie,

    Your friend Stephanie (my niece) shared your link with me for a VERY special reason. Thank you for sharing your story.  You could very well be writing mine as much of it is the same.  My son Matthew had Trisomy 18 and lived for an amazing 5 years.  There is so much to share that I couldn’t possibly do it all here. Please feel free to email me or better yet call me, I will send you my phone number. 

    I will say this right now…that the Lord has already begun his work through Jules,  evident by your moving testimony here. She is already so much alive and part of His plan, not just for you but for others you may not even know. I know this because I was so amazed at how many lives were touched by my Matthew, more than I ever thought possible. Rest and know that God will get you through whatever comes, the comfort He can provide is profound. Oh so much more to share…

     I pray specifically for you to have REST in the Lord, STRENGTH for each new day, COMFORT in all grief, and the PEACE and JOY that only our Lord and Savior can give.

    Ruth~

  5. Gretchen Sandquist

    Ryan and Allie,

    We are praying for strength, peace, and God’s glorious grace for you two. Romans 8:28 is a verse that was my Mom’s favorite verse so all of us kids knew it well, and understood its meanings thru all of life’s ups AND downs..it is so true. Hold fast to His promises and lean into His tender loving arms. We also pray for Jules that she will be cuddled in His strong uplifting arms and may find comfort, peace , and healing there. I think she looks a bit like Kynlee actually :) Hugs, The Sandquist Family

  6. I came across your blog about a year ago when looking for home decor inspiration and was completely drawn in by your incredible and beautiful spirit. You are a courageous woman and will be the perfect mother to Juliet, as you are to your other two blessings. Love and prayers from London, England.

  7. Allie,
    Your sweet little girl has already made the world a better place. Thank you so much for sharing your story.

  8. A friend shared your story with me last night and directed me to your blog as we have walked a very similar path. In 2003, God gave us a precious gift in Leah Vivian for just a short 10 1/2 hours but the story of God’s grace, peace, and perfect love have been and continues to be written through her little short life. Leah had Trisomy 13 and the time frame in finding out is almost identicle to yours. Leah had a bilateral cleft lip (upper lip that is split in two places). This was the first news the technician shared with us at our level II ultrasound and I remember lying there holding my hubbies hand and crying that our little girl would have to have surgeries and would have scars on her face etc. It wasn’t until the radiologist came in started listing ALL the things wrong with our baby girl that it hit me like a ton of bricks, “Is there anything right with her?” And of course she was perfect in God’s eyes as He created her and He doesn’t make mistakes but that news was overwhelming and just as you described in your story. We too trusted God for the length of time we would get with Leah as abotrtion was offered as an option for us as well. Leah is our fourth child so we too had to share our news with our three other children who were 8, 6, 1 1/2.

    I have read all your comments you have received and see that you have much support and even others who have walked this path as well, but I want you to know that I would consider it an honor to support you by speaking more with you if you are interested or need that. I know God allowed Derek and I to walk this path and it would be a privilege to share even the smallest part of your journey with you. I am ever grateful for you and your family that you know God and how very good He is. I can’t imagine having gone through our journey with Leah without Him.

    We have one other small connection, I too have taught in the DC District, at Cokato Elementary. :o) If you are interested in contacting me, please do not hesitate. My husband I will hold you and yours up in prayer. kossdv@usfamily.net

  9. Your story brought tears to my eyes. All babies are precious in God’s eyes. I will be praying for baby “Jules”.

  10. My aunt posted your story on facebook…I read it because we were told there was a possibility our little guy had tri 18, or 13 (he had a cyst in the brain, spot on the heart, and large kidneys), we too had to go through that excruciatingly long month for the next ultrasound and an ultrasound every month after. We met with a pastor and his wife who told us of their grandchild who they were told had tri 18, but was born with a different tri and is now an 8 year old happy little boy! It was encouraging to hear different stories, and it turned out we have a healthy little boy (just a little problem with his kidneys and bladder, but we will take that). Your story took me back to how hard all that was the “unknowing”, and I too wasn’t sure I wanted to use the name we had on this child…I felt awful for thinking that…so glad I’m not the only one who went through that. We did though, and Jay is now 6 months! We will be keeping your family in our prayers. My heart goes out to you.

  11. Allie-

    I heard about your blog through a friend of a friend and thank you so much for sharing. My heart aches for you and your family. We went through a similar experience about a year ago with our daughter and though she went to be with Jesus, we got to experience His love and mercy. So I pray that God would comfort you and your family at this time and we will continue to pray and believe for healing for you and your sweet little girl Juliet.

  12. Rebecca Wanha

    I am praying for you and your family. I can only imagine your pain and yet in some ways I have been there. And yet I feel like there is no words to say other than I am praying for you and your family. Also I can tell you that I have a friend who has a son who has Trisonomy (I am not sure which one) and I believe he is like 10 years old so if you want to connect with her please let me know. Take care and now that you are being upheld with prayer.

  13. Ryan, Allie, and Family
    As I went about my day today I couldn’t get you off my mind. I have known Ryan and family since he was very little. I am keeping you in my thoughts and prayers . Jules is kicking and telling you that she is ok and wants her family to know that God is looking down from above. My mom went thru this so many yeaars ago. She too is praying hard for you. Know that with Faith, Family, and Friends you will make it thru anything.
    Take Care and I am sending hugs for you all.
    Gail Nelson and Family

  14. Steve and Letta Whittaker

    We have been praying for you and Ryan and are deeply touched by all you have been willing to share. Thank you for introducing Jules to us all.

  15. Dear little Juliet,
    I am consumed by thoughts of you these last few days. My precious niece, You are beautiful already and I havent even met you yet! I am in awe of how your sweet little life is bringing so much glory to The One who created you, what a divine experienc that most of our lives cant hold a candle to. Tonight I picture you, craddled inside the hands of our God, the one who knit you together so perfectly, resting there until you are craddled in your mommy and daddys arms. I am comforted by the assurance of how much God loves you and how he intimately knows you already. I pray your mommy and daddy can find peace in this too, knowing He holds you in his hands all the while his hands are embracing your mommy and daddy aas He guides them through this valley. He is our comforter.

  16. Hi Allie,
    You don’t know me, but I know your sister Sonya. I went to Northwestern with her. I am very close friends with her friend Katie Powell. I just read your blog post about you’re finding out about your sweet pea having Trisomy 18. Tears are streaming down my face. My heart is breaking for you–your words conjured up many of the same feelings I had when my husband and I found out that our daughter had full Trisomy 18 three days after she was born…our world came crashing in. Her name is Lyla and her life verse is Psalm 139: 13-16, the same verses you put on this post. The Lord makes no mistakes, and your little one was created exactly as the Lord wanted her to be. Her little life is a precious gift, and God knew exactly what He was doing when He gave her to you. Our Lyla is now 3 1/2 years old, and is thriving. God provides beauty for ashes. If you want to look at our blog and read her story, you are welcome to. Our blog address is joeljennyblog.blogspot.com Also, if you would like to contact me my email is jennyjane78@hotmail.com
    I will be praying for peace and comfort for you and your family’s hearts, in knowing that her life is in Jesus’ hands. Jenny

  17. Hello! I somehow stumbled upon your blog on Facebook. I went through the same thing you did and understand the fear and tears. My one year old daughter is beautiful and healthy and I believe God healed her. My heart is heavy for you and you are in my prayers. I truly believe God will heal or use little Juliet’s life for His glory and you will be immensely blessed.
    I like all of your other blog posts and will continue to follow. I’m from Minnesota, but now live in Connecticut. Oddly, my husband is from Dassel. It’s fun to read about a piece of “home”!
    Blessings to you, Allie and family. You’ll be on my heart and mind over the next few weeks. I hope you’ll receive good news and you’ll be able to post something happy!

  18. Jane Hendrickson

    Your family is in our thoughts and prayers. I have a baby girl with special needs and a genetic disorder as well. If I can offer you any encouragement you are never alone. During my journey of not knowing my future with my daughter, but believing in the greatest outcomes I found comfort in this verse and want to share it with you.

    Matt 15:28 Then Jesus answered and said unto her,” O woman great is thy faith be it unto thee even as thou wilt.” and her daughter was made whole from that very hour.

    God has a plan for everyone and miracles do happen. I will add your family to my daily prayers.

    Jane (Keskey) Hendrickson

  19. Hi I found your story though Ryan’s Cousin Kristin. She shared it with me because she knows 2 years ago we sat in your shoes. At our 12 genetic screening ultrasound we found out our sweet little girl Abigail Noelle would not stay with us forever. She was diagnosied with trisomy 18 2 days later though a CVS. I have to say the St. cloud genetics dept was a huge help to us during this time and answered all our questions too. I want to let you know I am thinking of your your husband and you, your kids and, your sweet Juliet. It is hard to tell kids their sibling won’t be with them in ways they will understand. Abby was our 4th and our older kids were 6,4 &2 at the time. We tired to explain to them so they would understand but after she died was so much harder to answer their questions. We still celebrate Abby and she is very much a part of our family. Ask any of our kids and they will tell you we have 5 kids in our family, and that their sister lives in heaven with Jesus. I remember when we first found out she had T18 I was lost, I didn’t know anyone else going though this. Please if you want someone to talk with, email me. It’s not easy to prepare a funeral when others are decorating nurseries. I’m going to post your story on my baby loss board too where I know the other mamas there who have babies in heaven will be praying for you too. Sending hugs and prayers your way.

  20. Susan R. Howard

    Allie,
    My heart hurts for you and your family. I have been through something very similar to this and I know how you are feeling @ this moment. I am no tgone into deatils @ this moment and I will share I have lost my baby boy…I delivered him @ 26 1/2 wk. this was 21 years ago. They wanted to draw fluid and all this good stufff.But my thing is I am posting your blog down her in South Carolina and asking my FB friends to please pray for you and your husband and family.

    Prayers,

    Susan Howard

  21. Jon & Priscilla

    Allie, Ryan, and Family-
    You guys are so strong and your faith is so beautiful! You are truly an inspiration and our heart goes out to you during this time. Thank you for sharing your story with us. Please know that you are in our thoughts and we will be praying extra hard for Jules.

    Jon & Priscilla Hillmann

  22. Hey Allie,

    I am constantly praying for you and your family and always do. My small group is praying for you. We will be praying that little Juliet will continue her fight and bless you in ways you cannot imagine. I cannot begin to comprehend what you are going through. I am always here for you if you want to talk or cry or whatever. I love you so much and let me know if there is anything I can do. You are such a Godly woman and inspire me so much.

  23. Allie, I don’t know you personally, just through your sisters-in-law and coworkers from Dassel Elementary , but I just wanted to say how much your story has touched my heart. Your precious baby girl is embraced with love and is being lifted in prayer by so many. A new baby is God’s most perfect blessing…..and your sweet Juliet Faith is just that! Sometimes our time with these precious little ones is much too short and sometimes our time with them is a painful one, but they are forever God’s blessing to us. Each moment we have with our children is a gift and you are so inspiring with your faith and love of God, no matter the circumstance. Love and peace to you and your family and especially for Jules, your sweet little one, who is already touching lives and hearts.

  24. Please know that SO many others- including me- are lifting Juliet, you, and your family before the Throne of a mighty God. God works for the good of those who love Him, and He keeps NO good thing from us.
    It is already so obvious that God is in control of this, and it will be used to His glory.
    This precious baby-girl could not have a more beautiful, loving, caring, Jesus-following, and God-serving woman for her mom!! God chose you two to be her parents for a reason bigger than we could EVER know, and His Plan is so high above ours that we can only fall at God’s feet in worship & in need of Him!
    –I praise God for little Juliet Faith and her story that is only beginning!!–
    **Allie & family: I pray that you feel the Lord’s arms around you, holding you tight in His grip of love.
    {{Psalm 52:8-9}} But I am like an olive tree flourishing in the house of God; I trust in God’s unfailing love for ever and ever; I will praise you forever for what you have done; in your name I will hope, for your name is good. I will praise you in the presence of your saints.
    {{Isaiah 41:10}} So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

  25. Alysha Ravaska

    Allie, I will definitely keep you guys in my prayers through this difficult time and the journey that littly Jules brings you on! Stay strong and lean on the support that you have . . .which I know you you have a lot of!

  26. First and foremost, I am so incredibly sorry to hear that anyone has to endure the journey you have just begun. My aunt shared your blog with me (my cousin, Aimee Lind, is a friend of yours) because we had a similar journey. I am thrown back a bit right at the moment, I do have to apologize. So many things you have written, I wrote myself six years ago…so I am sitting here, trying to breathe and fight back a very powerful sob. It’s amazing, your words have just completely thrown me back and vivid memories are just flooding my mind right now. Anyway, I will be back on your blog…and I will have so much more to say to you. In the meantime, I just wanted you to know, I will pray for Baby Jules…I will pray hard…and if you are at all interested in reading about our Trisomy 18 baby boy, Maddox Ryan…you are more than welcome to see it at http://www.maddox-ryan.memory-of.com password: angelboy – it is on the “His Legacy” page – at the bottom begins our CaringBridge journal – it’s our entire journey – like you, I used it as not only a line of communication, but as my own personal therapy.
    Sending prayers,
    Shanna Scheithauer

  27. My husband seems to think that I am a perfect person to write you a personal note. I see my failures, fears, and inadequacies so I strongly disagree. However, we do share a commonality of pain and grief over our precious children; so at the very least I can offer you love and prayer from another Mom’s broken heart.

    At 20 weeks our son’s ultrasound showed several abnormalities. We named him Judah (God shall be praised) Matthew (gift of Yahweh). We had an amnio done a couple weeks later, because they feared that he, too, had Trisomy 18. Our son does not have Trisomy 18, but was born with several “defects” and “abnormalities”. (I hate those words, by the way.) 13 days on a vent. 32 days in the NICU. 3 years later and he is 1 of 4 of the greatest joys we have ever known! (He is our youngest.) I don’t know what story God is writing for Juliet, but I understand pain, grief, and desperation. I also understand healing, restoration, redemption, miracles, faithfulness, supernatural power, and true joy; because those are just a few of the many things God has showed us about His character through Judah. And these are all things we have seen in Judah’s own little life. You don’t know what Juliet’s future will be – aside from her eternal one:) – but you do know Who holds it, and Who holds her. He can do ANYTHING. Whatever it is He chooses to do in and with Juliet’s life, He will glorify Himself and He will sustain you. One more thing: however long God “loans” Juliet to you, you will be so much richer for having known her and having found a deeper intimacy with Christ because of her. God is good. I will be praying, grieving, and rejoicing with you.

  28. Allie, received a prayer request for your family from Kjolhaug’s. Just to let you know how we are lifting your family up to the throne of God, asking for all of God’s goodness to reign down on your family. Praying for God’s mercy to cover you all. Praying for that precious child, Jules. His promises are True – He is all Good – His power is a Resurrection Power – Jesus – Faithful Father – Powerful and Precious Holy Spirit.

  29. 2 years ago on June 5th we were in your shoes. I know exactly how you are feeling. I went through the exact same emotions that you have shared. Although our baby has a different diagnosis (he has spina bifida as well as hydrocephalis) we have gone through the storm and we are finding our new normal. Having a special needs child is a challange but knowing that Special Needs Children are giving to special parents gets me through those times. Many prayers for you and Ryan.

  30. Amber Peterson

    Allie,
    I am so sad reading this right now. As you know I am a genetic counselor for Perinatology in St. Cloud so if you and Ryan have any questions or just need more information please please please let me know. Greg and I will keep your family in our prayers.

    1. We have thought about you amber, and what a tough job it is you have as well delivering news to parents. What a great resource you are and we will keep you in mind if questions arise. Thanks for the prayers!!

  31. Connie Baumann

    To Ryan and Allie,
    You don’t know me but I am Lisa Erickson’s sister, Connie, and she shared with us your news and your blog. I am sure that I can not know what you are going through at this time, but I can feel the strength in the power of faith and know that God is doing great things. I went through breast cancer 4 1/2 years ago and I now know “the peace that passes all understanding” and the strength you feel through everyone’s support and prayers. Please know that we have started to include you in our daily prayers and will pass this on to my prayer chain. May God give you his healing power and may Jules continue to bless you:)

    1. We are so blessed by your prayers. It makes me cry every time I read of people praying, especially people who we don’t now personally. What a mighty God we serve…and prayers do make a huge difference. They are holding us up for sure through this journey!

  32. Allie and Family, you have been and will continue to be in our prayers! Sometimes in difficult times we feel the presence of the Lord the most! And He shows His GREAT love for us through those people (like the dr.) that are there when we need it most. It is amazing how He works ALL things for good! :) I think her name is beautiful! And that first picture I think she looks a lot like Kynlee!! Our prayers are with you and sweet baby Jules! :)

  33. Praying for your family. Remember that God has chosen you for this journey. He chose you because you are strong, you have great faith, and He felt as though your were most perfectly made to be Juliet’s mom. It is so difficult to understand these things, but I know that the Lord is BIG and His will is perfect!

  34. Mindy Plewacki

    Love and prayers to you, sweet Allie! I met a girl with Trisomy 18 a few years ago — she was 5 yrs old and a beautiful and very special girl. Jules is already touching hearts and impacting a lot of people!

    Sending a big hug!

    Mindy

  35. Hi Allie, I’m one of Sonia’s “old” roommates. My heart hurts for you that you have to go through this journey, but know that God’s grace is always one step ahead of you. My friend recently introduced me to a group “Selah” (she actually named her daughter Selah) they have a beautiful song called, “I will carry you.” one of the lead singers found out the same news you did and carried their baby full term after being advised to terminate the pregnancy. She wrote an amazing book about her journey that may encourage you. Sometime it helps just to see and hear that others went through something similar and to see how God gave them the grace for the pain. I will be
    praying for your miracle, because her life does have a purpose. The book is called I will Carry You by Angie Smith

    1. Thank you so much Sarah for your encouragement. My mother-in-law just gave me the book and it is so good to read about someone who has faced it before. I’m sure I’ll blubber through it:) Thanks for the prayers!!

  36. Sweet Allie :) The great and amazing truth is that God IS all over this!! As I just read this , I found myself praising His Holy Name because your family and your precious baby girl are bringing Him the glory He deserves! Even though His ways are not our ways, ” we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Romans 8:28 Just think of how our Lord has already used Juliet to draw people to Himself…. She is a blessing and a gift far beyond what will ever be known! Your family has been chosen for such a time as this and may His power be made perfect in your suffering. LIfting your family before the throne of our God!
    With much love and prayer, Jody Walter

  37. Great Aunt Esther

    Jules, you know that your Great Aunt & Uncle are praying for you. We pray that you continue to grow and be a blessing to everyone that knows you. We are praying for mom and dad for the strength and wisdom to care for you. We know that Tate and Kynlee love you already and looking forward to meeting you. I cannot wait to meet you and see what God has in store for you and your family and time that you will have with us. Help everyone to celebrate everyday of your birth and enjoy each precious moment with you. Love you lots. Give mom a good kick for me and let her know I love her and am praying for her too.

  38. Allie, we are friends of the Kjolhaug’s and just wanted to let you know I will be praying for you and sweet baby Jules! Father, I pray for Your perfect peace and Your mighty loving presence to be manifested to Ryan, Allie, baby Jules and their family. I pray for Your love to be poured out and that You would guard their hearts and minds in Christ Jesus! Move in powerful ways and use this life to bring forth life in others! Amen.
    Thanks for sharing your raw emotions and thoughts – you are one strong and beautiful Mama!

  39. Bonnie Rosheim

    As a mom that needed God’s people to be heard when our child was facing a crisis, I lift your family and your precious “Jules” up in prayer from Sioux Falls, SD. Praying for our God’s great and mighty healing power and love to support and encourage your family as you go through this journey.

  40. Just want to let you know that you all are in my thoughts and prayers. What a beautiful name for such a little blessing. Take Care and You are in my thoughts daily.

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