Sep 24

Some Big News for Us

A few weeks ago when we went in for the mid-pregnancy ultrasound we were told the heartbreaking news that our baby would be born with a cleft lip and palate. It was devastating to us, mostly because we didn’t know anything about it. As common as complications in pregnancy are, anything other than a healthy pregnancy is shocking and very stressful. The good news is after some tests the doctors believe it to be an isolated issue, meaning hopefully everything else will be healthy. I got in touch with a few people who have been through this and they were very helpful and informative, reassuring us that while the first year will be very challenging with feeding issues, and surgeries–that for the most part by about one year of age their lives had returned to “normal” and they have beautiful happy babies.

It is overwhelming when I think about what this sweet little baby is going to have to go through but we have come to terms with it and are very hopeful that things will turn out ok. We are now doing our best to prepare for the happy arrival of our new baby boy.

photo of Moses by Aubrey Trinnaman

156 Comments

  • Logan says:

    Oh Jordan, I'm sorry to hear that. For what it's worth, I work closely with a woman who has a (now) one year old who was also born with a cleft lip and palate. He was healthy as could be and the surgery went flawlessly.

    You guys will be great, loving parents to this new little guy!

  • Lehua says:

    i hope everything turns out for the best for you. you guys will be great parents. <3

  • Bethany Fischer says:

    This new little guy will have lots of cheerleaders from your blog family rooting for him through everything (and so will you!). That's got to be worth something.

  • Chris says:

    if it's any comfort, our little girl had to spend the first week of her life intubated on a respirator, covered in wires and fed through iv. it was the longest week of my life, and the first time i ever really felt like an adult. now that she's five months old, she's happy as a clam and seems to have no recollection of it at all. my own memory of it is already fading.

    it may seem like a lot to go through, and will feel like a lot when it's happening, but when it's all behind you, neither you or the baby will think about it much. you'll be to busy enjoying each other's company!

    p.s. pls forgive the lack of caps. typing one-handed while nursing the babe!

  • Janelle says:

    I'm sure its a bit worrisome for your family, but it will all be ok! Our family will keep yours in our prayers, but most of all, CONGRATS! Two boys = exhaustion and fun!

  • 6p00e55098ce098833 says:

    I am so sorry about the news. Your baby is fortunate to have parents doing their best to prepare. Many good vibes going your way.
    Bises, D

  • anna says:

    the baby is/will be loved and that is all that counts!

  • simplesong says:

    Thanks for sharing + so sorry to hear. Wishing you and your little ones all the best … ss

  • Jane Flanagan says:

    I can only imagine the worry and fear that every parent-to-be goes through and how anything like this would send you into a tailspin of angst.

    But I know what a great Mum you already are. And I really trust that everything will turn out just fine for your little family.

    This baby will be a trooper, just like his Mummy!

  • Chelsea says:

    He's a lucky little babe to have you guys as parents. Sending prayers your way that all will turn out for the best.

  • Heather says:

    Sending you and your family all good thoughts! I have no doubt your little one will be so loved and so lucky.

  • Amanda says:

    Sending good energy in your very specific direction. <3 <3 <3

  • Darci says:

    I am so sorry, Jordan. My brother and sister-in-law recently found out that their baby has to have surgeries in his first year of life, so I know how hard it is to get that news. But as I keep telling them – this will just make him all the more special. My thoughts are with you…

  • life according to celia... says:

    i'm so sorry to hear the difficult news, but very happy to hear that you are carrying a healthy baby boy. i've never known a baby with a cleft palate per se, but i did grow up with a girl who was born with one. other than a tiny scar above her lip, which i always thought made her look cool btw, she led a normally strange childhood just like the rest of us. :)

  • Kaylen says:

    Oh my gosh – you guys are so strong. You are all in my prayers. Everything will be wonderful!

  • MomVee says:

    Without hijacking your comments with my own tale of woe, I'll just say I can sympathize. It's good news that the doctors think this is an isolated problem. Hugs to you, Jordan, and bless you and your family.

  • kate says:

    he's already one of the luckiest guys in all the land. he'll be fine, healthy, and loved SOOOO much.
    we'll be thinking warm and fuzzy thoughts for you and the whole family.

  • grace says:

    May God bless your family as you press through this challenge together.

  • thislovelycity says:

    Sending you good thoughts. He will be loved & I'm sure you will be wonderful parents!

    xo.

  • "hi, i'm ginnybranch stelling and i love love." says:

    i'm so sorry for the stress this news has brought you two…i am thinking good thoughts for you and your sweet family. he is still one very lucky bo with wonderful parents.

  • Whitney says:

    You.Are.Awesome.

    Your little boy will be so beautiful and precious to you. The first year will be hard, but oh, it will be so worth it.

  • Rachael says:

    what a blessing for this baby to have parents who are excited, optimistic, and loving.

  • josephine says:

    sending you lots of positive thoughts and strength right now. your new baby boy is going to be one lucky kid to have two parents and an older brother to spoil him with love.

  • Allison Hasel says:

    Jordan, sorry to hear about the complications. As you can tell, you'll have a whole troop of bloggers praying for safe, speedy recoveries and sending lots and lots of good vibes your way.

  • BEL says:

    When I was a dental student at the university of toronto, i did an elective in the cleft lip and palate clinic at sick kids hospital and it was amazing. the babies would come in just after birth and were seen often to adjust prostheses to mold the cartilage of their nose. the babies we saw who had been through the treatment were so wonderful, happy, beautful and healthy. i got to see some of the teenagers who had been through the surgeries and braces and the results were wonderful. i'm sure it will be an added challenge but there are so many amazing centres like the one in toronto that have made such great strides to treat these children.

    i wish for you that your baby is healthy and wonderful and hope that you really enjoy motherhood. i'm sure it will be incredible!

  • Drica Rodrigues says:

    Não tenho dúvidas de que vocês é a pessoa certa para cuidar desse bebê!!! Ele trará muita alegria a sua vida amiga. Tudo vai dar certo!
    Bjs

  • susannah says:

    thank you for sharing something so vulnerable. i am sure there will be rough moments in the journey, but the gift of your child will literally push light when you are feeling darkness. when our daughter was born deaf i didn't know any deaf children, so i felt so overwhelmed with grief. two of the things that most helped my husband and i besides prayer: snuggling my newborn little monkey- SHE was totally happy despite appointments and surgeries and tests and her diagnosis- it was ME who was grieving my expectations and hopes; her joy pierced my sadness AND connecting with other parents (online and in person) who had gone through the same thing before me.

    sorry for the long comment!

  • lisa says:

    Jordan, I'm sorry to hear about that. Your precious little boy is so lucky to have you as parents. I hope everything turns out for the best. Sending you and your family good thoughts!

  • Ellie says:

    I am a blogstalker. I found you thru Juliann. My niece has a cleft lip and palate. They live in Brentwood and have had all the work done at Children's in Oakland.

    They know all the best MDs and Maxiollofacial people. If you want to talk with her, just comment on her blog and she'll write you.

    Claire is totally nice and normal and a good kid.Her cleft is just another interesting fact about her.

    Here is a post my sister did about Claire.

    http://groundhogdaywithceliafae.blogspot.com/2007/10/my-claire.html

  • Denise Levy says:

    Your post really touched me. I am so sorry to hear your news. He is so lucky to have such a loving family. I wish you all the best.

  • jane says:

    jordan,

    i'm sorry to hear that your baby's first year will be filled with surgeries, but i know that he's extremely lucky to be born to such loving + caring parents. from this adversity will rise great strength.

  • Erin at Vale Design says:

    My prayers go out to you and your family. Stay strong and positive! xoxo

  • Iman says:

    My daughter was born a preemie, so I know how you must be feeling. It's amazing how our mindset changes once we are put into a situation. Wishing you and your family lots of love and patience.

  • marisa says:

    He will bring you so much joy. :D What a wonderful blessing that this new baby is already receiving so much love from his family. All the best!

  • Damaris says:

    please please please watch the movie Smile Pinky. I think it will make you feel better.

    Good luck and I'm happy to hear it's isolated.

  • Lila says:

    It may feel very scary and be frustrating, but we all have to remember how lucky many of us are to live in developed countries where getting procedures to fix a cleft palate is possible.

    It's heartbreaking seeing children and their mothers in underdeveloped countries who don't get treatment for this problem, unless they get a visit from organizations like operation smile. It's devastating how many children have to live with this for YEARS untreated.

    I hope you will document for us what you go through with your new baby. It can not only be educational to the general public, but remind us all that this can happen to anyone, and that no child deserves to go though life with this problem untreated.

  • angela hardison says:

    sorry to hear about the complications, but happy things will be fine. as everyone else said, eh'll be a lucky little guy.

    sending prayers your way!

  • alli michelle says:

    Prayers are with your family! Wishing you every happiness as you welcome your new bundle of joy into the world.

  • 100 Percent Cottam says:

    hi jordan – i only know you through your blog but wanted to send hugs. that is a lot to deal with. you guys seem awesome and i'm sure you'll be amazing, as will your sweet little boy. thanks for sharing your world with the rest of us. best of luck, thoughts & prayers!

  • Fowler family says:

    Hi Jordan, you don't know me, but a friend of mine referred me to your blog. I have 2 little boys that were born with cleft lip and palate. Their clefts too are nonsyndromic or isolated. They are now 4 and 2 years old and the apples of my eyes. My heart goes out to you. I will email you. Hugs, Anna

  • Buddy Rooster says:

    Just wanted to say that I can sympathize with you guys. I know firsthand how devastating it is at that 20 week ultrasound to hear anything other than good news. Our son was born with a clubfoot, which we were told about at that appointment. I must say, however, that it is such a blessing to learn about it beforehand, instead of finding out at the birth. You will have so much time to research and learn about his condition, and you'll be prepared to do whatever needs doing. After wondering what my son's foot would look like for the rest of the pregnancy, when he was born my first thought was "that's not that bad!"

  • {april kennedy} says:

    Having a child with special needs, I can promise you that the journey will be worthwhile and one you will cherish…even though it wasn't initially what you were hoping for. Enjoy your pregnancy and rely on your Heavenly Father for peace, comfort and strength.

  • dandee says:

    praying for you sweet one…and you, dear.

  • Tiffany says:

    I've loved your blog for some time now. I'm so sorry to hear your news. It is so scary to find out that things aren't 100% perfect but I agree with other commenters who have said so much better to find out now than at birth. A friend of mine also had a baby girl born with a cleft palate that they did only discover at birth. It is absolutely remarkable what the surgeries can accomplish in such a relatively short amount of time. She is a beautiful happy healthy 2+ year old now. Wishing you much strength and lots of support in the coming year.

  • Lara says:

    Jordan,

    I work with an organization that provides cleft support–and I know how beautiful and amazing cleft kids are. I believe you and Paul will excel as parents of a cleft kid–and with your abilities, will end up being a blessing for your family. Thank you for your bravery in putting a face to this birth defect.

  • It's Always Sunny in Portland says:

    this will be a gorgeous and loved baby boy. stay positive and be brave. thanks for your great blog, can't wait for updates about this little guy!xoxo

  • Anonymous says:

    Aw. That's sad news.

    I had a baby last year who had to spend a bit of time in the NICU. It was a new and overwhelming experience for me. His nursery-mates were three little ones with cleft palates and I was so impressed by the composure of the parents. I asked one of the nurses about it and she said it's bcs those parents had received this news earlier on and had had time to get used to the idea and get a plan ready. While the rest of us were freaked, they were holding and singing to there babies. You'll get there too. Sounds like you're getting there already. He'll be a beauty, no doubt.

  • Kelly and Kelly says:

    I'm sorry for the sudden news and your struggles. I will keep you in my prayers.

    Congrats on another boy!

  • chiara says:

    your baby will be beautiful. my heart goes out to you and your husband.

  • Margaret says:

    my baby had to have surgery a few months ago (a rare problem with her intestine) and we shared a room with two different babies who had surgery for a cleft palate. they were just in for one night each, so it is a relatively brief hospitalization. and they were 5 months old. my baby was 11 months and within a few days of leaving the hospital it was like it never happened. i think the anticipation may be the hardest part for you–but know that babies heal very, very fast.

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