I don’t even know where to start. I thought that opening up and sharing our baby’s diagnosis with HLHS was hard, but this one… This one I have been dreading with every ounce of my being. We lost our baby.
I was very open with all of the details surrounding the HLHS diagnosis. But because this has been such an extremely difficult time and talking about it is so painful, I hope you will respect that we are choosing to keep some of the details private.
What happened?
Shortly after the diagnosis of HLHS was confirmed by our pediatric cardiologist, I experienced some additional complications. We lost our baby around 21 weeks of pregnancy.
Although the initial test results (FISH results) from our amnio didn’t show a genetic abnormality, we later found out that the baby had Jacobsen Syndrome.
What is Jacobsen Syndrome?
Jacobsen Syndrome is a very rare genetic abnormality caused by a partial deletion of chromosome 11. It is also known as 11q terminal deletion disorder. Babies with Jacobsen’s experience a multitude of symptoms, including delayed development, cognitive impairment, behavioral issues, distinctive facial features, feeding difficulties, and almost all have Paris-Trousseau syndrome, a bleeding disorder. Heart defects are associated with the disease and were the cause of the baby’s HLHS.
How are you doing?
It’s different on any given day. Some days I find it very difficult to keep it all together. At times I’ve felt completely immobilized by grief and sadness. I’ve been almost completely unable to talk about it with most people outside of my immediate family. But some days I feel a bit lighter, and although I carry the pain with me, I don’t feel as bogged down by it. At times I feel a bit like my “normal” self, but sometimes I feel like I’m just faking it. It’s been very difficult to know how to be and how to move on.
The physical aspect has also been a struggle. Being over halfway through my pregnancy, I had gained around 9-10 pounds. It feels very much like the postpartum period but without a sweet baby to make it all worth it. The thought of wearing maternity clothes is too heartbreaking, and I just feel uncomfortable in my body. Also my milk still came in, which was an incredibly sad reminder that my baby was no longer with me.
Thankfully I have a wonderful support system in my family. After the loss, Layla and I flew out to California. Afterwards, my mother and sister came back home with me to Virginia for some additional family time. I am grateful that I’ve been surrounded by so much love, especially when I feel so incredibly alone with this loss.
How has this affected your faith?
I talked a lot about my faith during my last post. And I would be remiss not to touch on it now. My faith has never been tested as much as it has been over the past several months. I pleaded with God, begged for everything to be okay. And I’ve felt many different emotions. I’ve felt like I was being punished for some wrongdoing or for not being “good” enough. And then I’ve been really effin’ MAD. I’ve found it very difficult to accept that this had to happen to me and my family when we prayed so hard to get pregnant after our last miscarriage and then for this child. I’ve always believed that God is good, but it is hard to see the good in such pain. To say it’s been a struggle would be an understatement.
Since the loss, I’ve been going through the motions with my faith. I’ve read my devotional on and off. I’ve prayed less. I’ve wondered if God has even heard me. But overall, I am desperately trying not to let myself sink into that overwhelmingly negative space. I’m trying to focus on my blessings (because YES, I have many of them) even amidst this incredible sadness. It’s not always easy, but sometimes it helps. I’m hopeful that eventually it will feel less like I’m “going through the motions” and more like a relationship once again.
At this time, I would so appreciate healing prayers for my family and prayers for all other families that might be experiencing similar pain and loss. It’s so lonely and and the pain so deep, but I pray that by sharing this others may be lifted up and feel less alone.
Sharing this news has been incredibly painful. Every time I’ve had to say the words, written or in person, it’s like reliving the loss again. So although I may not respond, please know that I read every comment and am incredibly appreciative of your support.
I’m so sorry for your loss Lauren. I can’t even imagine how you feel. I did notice you looked different in some of your more recent photos but I didn’t want to pry or upset you by asking. Not my place.
How difficult this must be for you to have to share your pain with the world. It’s good you have your friends and family around you. I’m so very sorry.
I figured it was probably becoming obvious that I was no longer pregnant, but I just had to wait until I was ready to share. <3 Thanks for your support.
I’m sure this was a very hard post to write. Sending thoughts and prayers to you and your family.
Thank you so much.
Dear Lauren, I am so very sorry for you all. Please know that when you feel you cannot pray like you normally would, we are praying for you and your family.
Thank you, Agnes. It means so much to feel so supported.
I stopped in my tracks when I saw the title of your post today, and reading what happened broke my heart for you. I will be lifting up your family in prayers- I know how hard it is to see the Lord through this loss, but I just know he is walking right by your side. Sending you love Lauren.
Your prayers are so appreciated, Gentry.
I am so very sorry for your loss. I will remember you in my prayers.
While this is different of course, I was told about 2 years ago about some health issues that will make it extremely likely I will never be able to conceive. It’s heartbreaking everyday. But I want to share with you because I’ve been there too with my faith. And while it may feel like your going through the motions now, just keep going. Say whatever prayers you can, pick up the scriptures when your able, and if you can’t that’s okay, but do what you can and give whatever you have to Him. Just keep swimming, and I promise you it will get easier. I never had one big ah-ha moment of understanding and peace, but with obedience and time, peace and trust seeped in and filled my heart and grew stronger than ever. Now I can look back and see that I never was walking alone, my pain just made it to hard to see.
I am again so very sorry for you and will keep you in my prayers.
Anna, I’m so sorry to hear about what you’ve been through but thank you for your words of encouragement.
Lauren I am so sorry for your loss. I know that no matter what we say or do it won’t take away the pain. Please know that my prayers are with you and your family <3
Thank you, Sierra.
So sorry to hear this! I lost twin boys at 26 weeks and felt the same way. We will never know why these things happen, but have to hope that there is a good reason.
‘Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.’ · Romans 5:3-5
You should check out a little shop i found on Instagram called Dear Mushka. I have gotten a couple pieces of jewelry that have helped me.
Amanda, I’m so sorry to hear about your losses. Thank you for sharing that scripture. I will definitely check out the shop you recommended. Love to you and your family. <3
I am so very sorry for your loss, Lauren. Sending heartfelt prayers and thoughts to you and your husband.
Thank you so much, Kristie.
Dear Lauren – You don’t know me but I’ve been a follower of yours for about a year and always enjoy your posts and how open you’ve been. I am so sorry for your loss. I can’t imagine what you are going through. While it is not the same, I was diagnosed with endometrial cancer five years ago that resulted in surgery just 10 days later. It was by far the most emotional time of my life and I couldn’t understand why I was the one going through this while my friends were all having babies. With time, I am so much better, and that experience has made me understand what is truly important. Prayers and blessings to you and your family.
Julie, thank you so much for sharing your experience. I can’t imagine how difficult that must have been both physically and emotionally. Sending love your way.
I am so heartbroken for you and your family reading this post. I have been praying for you since you announced your pregnancy. Miscarriage is so incredibly hard, there are no words to describe the pain. When we miscarried after 2 1/2 years of infertility I wanted the ground to open up and swallow me whole. Sharing your baby’s diagnosis and your miscarriage is so brave. You are giving a voice to all of those who experience loss in silence. My thoughts and prayers will continue to be with you and your family during this very difficult time.
Laura, thank you so much for your sweet comment and prayers. Although it is been so difficult to share, I have never regretted it. Connecting with other women through their struggles and pain have made me feel so much less lonely.
my condolences to you and your family, i am aware how difficult this it.
b
Thank you. <3
I’m so sorry for your loss. I wish nobody had to endure the death of their child. My twin sons died after they were born prematurely at 23 weeks. Enduring 12 hours of labor, knowing they wouldn’t survive, was heartbreaking. Noah passed away during the labour and William lived for just under an hour. He died in our arms. They would have been 5 years old this November. Not a day goes by when I don’t think of them.
I hope you got to see and hold your son/daughter, take precious photos and footprints, it helps with the healing. I have a list of baby loss resources on my blog, (http://www.amyantoinette.com/baby-loss-2) but the one in particular I found (and still find) so reassuring is Still Standing Magazine.
Oh, Amy. I just can’t imagine how difficult that must have been. Thank you for sharing those resources with me. I will definitely check them out.
I’m so very sorry, Lauren. This had me in tears and remembering my own loss at 13 weeks. Not the same but still heartbreaking. It is so very lonely because you’re the only one who carried that sweet baby. We’re all surrounding you with love and hugs and lifting you in prayer. God Bless.
Lacey, you hit the nail on the head. It is a very lonely-feeling loss because I was the only one who carried the baby and bonded in that way. Thank you so much for your prayers.
Lauren, I’m so sorry for your loss. I unexpectedly lost my two year old son two years ago. I know the darkness of your days and I know the excruciating pain. Today, I stand with you and I grieve with you. I’m praying for you and remembering your sweet baby.
Laurel, I am so sorry to hear about the loss of your son. I cannot imagine how heartbreaking that was/and still is for you. Thank you so, so much for the love and support.
Lauren. I’m so very sorry for your loss. There’s just no other words I can think of. You guys are in my thoughts and prayers!
Thank you, Ashley.
This is when we, your sisters pray….when you can’t.
Hugs are given even miles away….
Rest in knowing we pray…..
Pam, thank you. Hearing that fills my heart with gratitude. Thank you.
Oh Lauren, I am so incredibly sorry to hear about your loss. Sending all the *hugs* and prayers for God to wrap His arms around you and your family <3
Thank you, Kate. Your prayers are so appreciated.
Lauren – my heart is breaking for you. As I mentioned in an email a few weeks back, we lost our baby boy after giving birth to him at 32 weeks in April. Every day is a struggle. Painful and awful. But you will survive and not a day will go by that you won’t think of him a 100 times. But each time will get a little easier bc you know you now have an angel to watch over you, and that is special. I’m sobbing as I write this bc I miss him so much and I know exactly how you are feeling right now and no one should ever have to feel like that. But you shouldnt bottle it up, bc even though he didn’t get the life you imagined for him, he got a brief life and that should be celebrate and talked about with everyone who wants to know. He is in a better place where he won’t experience the pain he may have endured here. I’m praying for you and your family.
Andrea, thank you so much for your email and your comment here. My heart breaks for you as well. I can’t tell you how reassuring it feels to know that I am not alone. Sometimes the loneliness of the grief is the worst part. Thank you for your encouragement and know that you are in my prayers as well. Lots of love to you.
Oh Lauren I am so incredibly sorry about the baby. After you opening up about your diagnosis you’ve been on my prayer list. I’ll continue praying for you and your family through this heart breaking time sweet lady.
Thank you, Greta. You prayers mean more than you know.
Dear Lauren,
I am a random follower for a few years and have followed your journey through your pregnancies and you uphold the utmost courage and grace to share your personal pain with the world. I am so deeply sorry for the loss of your sweet baby. My thoughts and prayers are with you and your family for strength and healing.
Thank you, Maria. I certainly don’t feel courageous, but having this space to connect with other women is truly a blessing. Thank you for your prayers.
You are so strong. I have been praying for you since I found out! Let me know if you need anything!
Thank you, Lorna. <3
Prayers and many hugs for you and your family!
Thanks so much, Sherrie.
I am so sorry for your loss, Lauren. I can’t even imagine what you’re going through on a daily basis. I know you’ll come out of this stronger, even if it doesn’t seem like it now. Thank you for being brave enough to share this. Know that we’re all praying for you and your family.
Lots of love to you all!
Thanks, Meg. I truly appreciate the love and support!
Lauren,
I’m saying a prayer for you and your family. I know this loss is incredibly tough.
Nicole, Thank you for your prayers.
I’m so sorry to hear this Lauren, I can’t even imagine what you’re going through. Sending you thoughts and virtual hugs.
Thank you, Kristina.
I’ve been following your blog for a few months and this was heartbreaking to read. I’m so sorry for your loss. Sending thoughts, prayers, and love to you and your family.
Thank so much, Lisa. We so appreciate your prayers.
I’m so incredibly sorry for your loss Lauren. Sending Prayers to you and your family.
Thank you so, Michelle.
I am so so heartbroken to hear about your loss. Having gone through 3 miscarriages, I get you. I won’t say the cliches things, because truly nothing helps. I’ve loved the Hillsong song “Even When It Hurts” during my grief.
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
Stacey, I’m so sorry to hear about your losses. Thank you for sharing that song. I love Hillsong United and the song had me in tears. <3
I never comment on posts I read, but I feel strongly compelled to send you a big, tight virtual hug. Just big, tight girlfriend hugs whenever you need one! Prayers that GOD soothes your heart, Lauren.
Thank you so much for taking the time to comment, Holly. Your prayers really mean the world.
This post just broke my heart for you and your family. May you be surrounded by love to give you the strength to grieve. My prayers are with you.
Thank you, Julie. I am very blessed to receive so much love from family and all of you.
Oh, Lauren. Truly, truly I say to you, that you have touched my heart with your words and I will keep you in my thoughts and prayers for the future. Life is so, so fragile, and there is so much we don’t know about the whys. It’s only normal to question.
Here’s to continued love and support from all that know you.
XOXO
Jodie
http://www.jtouchofstyle.com
Thank you so much, Jodie. Your support and prayers mean so much.
So so sorry for your loss; I have no words. Praying for you!
Thank you so much, Natalie.
My heart is breaking for you and your family. Prayers for you all.
Tif
http://www.brightonabudget.com
Thank you, Tif.
I am so sorry for your loss Lauren. Sending my prayers to you and your family.
Thank you for your prayers, Suzanne.
Really sorry for whatever it happened..I couldn’t control my tears after reading this.. I’m pregnant with my first baby.. Every passing day I feel so scared when doctor says something is not seems to be good without even checkin me. Then Scan report comes with everything normal.. So it was really scary to read this.. Stay blessed.
I certainly didn’t mean to bring you any additional stress. Stay strong in the faith that everything will be a-ok. Wishing you a happy and healthy pregnancy.
Sending prayers your way…I know that they work and send angels to be around you during this immensely difficult time. I felt the prayers lift me up and surround me with love and peace. I hope you feel that too.
Thank you so much for those words of encouragement, Vanessa. We so appreciate the prayers.
Lauren I am so sorry for your loss. As tough as things are always let your faith be bigger than your fears. Hugs to all of you!
Lauren, oh my goodness, I have been wondering but did not want to reach out or be a bother. Thank you so much for your bravery and for sharing but I am so, so sorry you ever had to write and hit publish on a post like this! My prayers are with you and your sweet family and ……. well, I am at a loss for words and that never happens but I am thinking of you!!
xx Kelly
I stumbled upon your blog last year and it was a great find! Your style is very similar to mine and I felt like if we met in person, we would totally be friends! I am truly sorry for your loss. I am sending you lots of prayers. Hug and cuddle that beautiful little girl.
I am so, so sorry for your loss, Lauren. This must have been a very difficult post to write. You and your family will remain in my thoughts and prayers. Sending love and hugs your way.
I am so sorry for your profound loss. You are in my thoughts and prayers.
So sorry to hear about this. Sending you huge hugs xx
http://www.vanityandmestyle.com
So sorry for your loss! Praying for you.
My heart is so broken for you and your family. I can’t even imagine the pain you are going through. As a mom we are protectors and when there’s nothing that we can do we feel helpless and lost. Thoughts and prayers for you all and that you receive peace in this difficult time.
Xoxo,
Whitney & Blaire
Peaches In A Pod
This must have been so difficult to write. I am heartbroken for you and so very sorry. You and your family are in my prayers.
Jill
Doused in Pink
I’m so, so sorry. My heart just breaks with you as I read your words. I will keep you in my prayers.
I’m so sorry for your loss Lauren. I can’t imagine what you must be going through, but I’m glad you have an amazing support system with your family, and even here on this blog. I know the pain of this loss may never fully dissipate, but I’m confident happiness will find it’s way back into your heart.
Chic on the Cheap
Dear Lauren,
So saddened to hear that you lost your second baby.?God has a purpose why it happened. I am one with you in prayer that you have the strength you will need to recover from this very sad moment of your life.
God bless you and your family.
I know that I don’t personally know you, but you are a sister in Christ. I am praying for you and your sweet family. I cannot imagine what it must be like but please know that God is with you and his light shines through you.
Katherine | http://www.oneswainkycouple.com
I am so sorry for your loss. I just lost my most recent pregnancy on 7/25/17 & I was about 15 weeks, It/he was a boy. My first boy. It was my 2nd loss of the year. The first one was days before my bday in Feb. I feel…… I don’t know how to explain it. I don’t want to get out of bed. All I do is cry. I feel like it’s my fault, but I know it’s not. He had a fatal condition. Holoprosencephaly. I believe it was my last chance at another child as I am 43. Which also males me even more sad. I’ll say some prayers for you.
I don’t even know where to start. I am so sad and emotional for you and from reading this. No matter how much “I am sorry” I say, it will not be enough because no one feels the pain more than you do. I hope you continue to pray, be close to God and close to your family because that is what matters the most in these tough times. We are here for you Lauren.
Hugs and sweet thoughts to you! <3 Ada.
There are no words. I am so very sorry for your loss.
I wish I could give you a hug. My heart goes out to you and your family at this time.
I’m so very sorry for you loss, Lauren. You and your family are in my thoughts and prayers.
I am praying for you, Sweet Lauren. May you feel God’s love wrapping around your whole family at this very difficult time. Thank you for sharing your story so that we can pray for you. <3
I am just so, so very sorry. Things like this are just not fair and so hard to explain. I truly appreciate how honest you are about where you stand in your faith. That was refreshing to read, and I am sure many people can relate. It’s not at all the same, but when we were in the middle of our infertility I had many of the same emotions toward. God. Praying healing over you physically and emotionally. I can only imagine things like milk coming in are such hard reminders. Sending you love.
Amy Ann
Straight A Style
I’m so sorry for your loss. My prayers are with you and your family.
I am so sorry for your loss. I too lost a baby in the second trimester (22 weeks for me) – I understand the things you shared and know how deep the pain cuts. I am also a believer and know how the questions roll from the heart – my baby girl would be 3 this year and I still pray over the hurt regularly. You and your family will be in my prayers. Hang in there and don’t be hard on yourself.
Praying for your healing, Lauren. While I can’t relate to what you are feeling and going through, I can empathize with your pain. Keep your faith and know that God is listening. Remember Psalm 34:18 The Lord is close to the brokenhearted and saves those who are crushed in spirt….
Continued prayers for you and your family.
Lauren, I am so so very sorry that you went through and are still going through this… I figured by your Instagram not something probably happened but I also didn’t want to invade your space or ask such a personal question but I’ve been praying for you and your sweet baby who is now your sweet angel.
Please know that God is very forgiving and God understands all of the feelings that you have right now questioning your faith and questioning his love for you and trust me he’s not mad he knows that this life is very difficult.
I can only offer you my heartfelt thoughts and prayers and I hope that eventually time helps some of this pain
I’m so sorry to hear your sad news Lauren. Sending you lots of love xxx
Emma
Bless your precious little heart. I too wondered when I was seeing pictures of you in “normal” clothes. I thought maybe I was wrong and had misunderstood somewhere. We are living in reversed worlds. I’m from Richmond, VA (lived there my whole life until 7 years ago) and now I live in CA. Prayers for your broken heart to heal. I wish I could give a big hug. XOXO
Sending prayers and love your way, Lauren.
~Whitney