You may have noticed an unintentional shift here on the blog over the last few months, and maybe longer, where I've been sharing less personal thoughts and feelings and really just posting less. I still share as often as I can on social media, but blog posts are harder and harder to sit down and knock out. There are lots of reasons for that and most of them have to do with other priorities taking my time. I love blogging and sharing and having my personal creative outlet, but life evolves and so does the way we have to spend our time.
Summer was a really busy time between moving and having all of the kids home and also dealing with first trimester symptoms. It became apparent that there was more to do than I could keep up with. So I just did my best and we pushed through it.
In the Spring we also hired significantly more help at Nickel & Suede. We were able to hire Soren's good friend from Chicago to move here with his family and help us grow the company. It's been awesome. But it also means we've been working harder and faster than ever. I've been more in the owner driver seat than ever before and it's taken a lot out of me. Being in charge is a blessing and a curse!
Over the last few months we've been gearing up for October-December sales season and let me tell you, it's only October 6 and every day I need a serious nap. We're super thankful for the good problems, but they take a lot of time and energy so that is where a lot of me and my brain go every day.
The burden of working so hard there has been kind of heavy and not something I feel super open about. I want to maintain an optimistic and hard working attitude, but often I feel tired and pessimistic and grouchy. So I'd rather not blog than blog about that.
Also we got some unexpectedly bummer news at our ultrasound a few weeks ago and its been a lot to process. I haven't felt like sharing it and it's been heavy on me so I'd rather not blog than dump heavy stuff on you.
That being said, I've also learned that sharing heavy things can lighten things in some ways. So while I don't know all of the details yet, I think I'll let you in on the latest news. We are having a fifth boy, but he isn't 100% healthy. From the ultrasound they could see that the baby will have a cleft lip. And that's all they could tell me. Cue the freaking out.
We don't know more than that until we go to a more in depth ultrasound in a few weeks where they can see more. From that appointment they should be able to see if it's a cleft lip only or the palate too. Obviously we're praying it's just the lip.
I still can't quite wrap my brain around it and there are so many unknowns that it's hard not to just go crazy with worry. I Googled it once and decided that was a bad idea. I've gone from feeling calm and ready to just face it head on to feeling totally to blame for his imperfection and despairing over the difficulties it could cause our little guy. It's apparently the "best" defect to be dealing with, but that sentence sounds insane if you think about it. I've been scared to share this news on the internet because as great of readers as I have, it feels like the kind of sensitive thing that may not always be treated kindly. I'm worried about 10,000 things from how he'll look when he's born to how he'll eat to how the surgeries will go to how he'll heal. How am I going to do it? I'm not sure. Not to mention it's something that Soren and the boys will also be experiencing and feeling things about.
But my faith side says not to worry. It will be what it will be. God can make good out of anything and who I become through the difficult things that happen in life is up to me and Him. Life isn't supposed to be perfect so I'll have to rely on a perfect God to get me through it. Easier said than done sometimes though.
Thanks for understanding and for keeping us in your prayers. The internet may be full of perfect pictures, but everyone is going through something and that's what makes us all in this together.
Thank you for sharing. I’ll be praying for y’all. We are all beautiful and unique creatures made in the image of the most high God. As humans, we tend to forget that but it always helps me to remember when I’m down. Take heart, God takes care of those that belong to Him.
My oldest was born with a cleft palate, and we didn't know about until after he was born. Your baby is perfect and you're the perfect mom for him. Life will be different for him and for you, but that doesn't mean it will be bad. You can do it.
Oh honey! So sorry for this unexpected news - that can't be easy. We are all thinking of you and cheering you guys on! But please know that YOU WILL BE IN GOOD HANDS. My only (unsolicited) advice is to "reframe": your little guy WILL be healthy, it just will just be a little different than what you're used to. You will get an awesome medical team to help you through this and make the best choices for him. Sending hugs from Wisconsin.
I'm really sorry for your work load and this heavy news. I know things will work out, but as a mom you want to protect your kids from everything! When you find out news like this before they're even born it is only natural to feel like you've already failed at protecting them, but that's not the truth! Heavenly Father knew you could be trusted with an extra precious soul. Remember that and also remember that modern medicine is just one of the many ways in which He sends us miracles. Hugs and prayers, Kilee.
I will say a little prayer for you and your family during this time. I did wanted to comment with my experience with Cleft lip and cleft palate babies. While I was not a mother to a cleft baby, I am a sister to one. My mom and dad were completely surprised/shocked 28 years ago when my brother was born. Needless to say, lots of hard times, ups and downs and surgeries but he is a happy, healthy and HUGE man now! I'm sorry because I know this is a tough thing to go through but just know, you've got this!
There is no doubt you can do this [all of it]! God gave you this special tiny person because he knew you were the perfect momma for him. Congratulations on all of the wonderful things baby and business :)
Finding out the news that your little one isn't 100% healthy is definitely hard to process. We found out at 18 weeks that our little girl had Spina Bifida. We were told that she would be paralyzed from at least the waist down and wouldn't be able to feel either. I know that coming from an outsider it may be hard to believe, but regardless of 100% healthy, having a cleft lip or a cleft palate your baby is going to be amazing and will be such a happy little man. You, your baby and your family will be in our prayers are you find out more.
The unknown is scary for sure. But, my daughter was born with a cleft palate. Her hard and soft palate did not develop but her lip was fine. She required the use of a Haberman bottle which is not scary at all and was only allowed thin liquids until surgery at 11 months. That was the hardest part. Her going into surgery and her being in pain afterward. At two years old, she started speech therapy through 7th grade. And braces were definite at the usual age. She's now 19 and you would never know she had any type of birth defect by looking at her or hearing her. You wouldn't know anything was wrong with her at 2 years old unless you heard her at which she was only a bit nasaly in her talking. Speech was not delayed and there were no breathing difficulties. Your baby is healthy! He's just going to have some obstacles that you all will be able to manage together. I hope this helps ease your anxiety. Prayers for your family.
The unknown is scary. My daughter was born with a cleft palate. Her hard and soft palate did not develop at all. Her lips was fine. She only needed to use a Haberman bottle to feed and strictly liquids until surgery at 11 months. That was the hardest part. Her going into surgery and seeing her in pain afterward. At 2 years of age, she began speech therapy lasting through 7th grade She had no speech delays or breathing difficulty. No physical evidence of her genetic deformity. And braces were a definite at the usual age kids get braces. She's no 19 and you would have no clue anything was ever wrong with her. Even at 2, it wasn't evident except she was nasaly when she spoke. Your baby is healthy! He's just going to have some extra work in his future but it will all be manageable with the help of his momma! Prayers for you and your family.
How heavy we carry the burdens of our children.. The same way that God carries our burdens for us. God made you perfect for your sweet little guy...God made you protective and loving just for him. He picked you to be his mom for a reason. Medical advancement is phenomenal for this. While it's not a uncomplicated road, it's a road that has a successful ending. How beautiful is a mama's love for her baby? Please take care of yourself. Seek out care for yourself. Accept help, talk about it, draw strength from others.
Prayers for peace as you process! My oldest had a cleft palate that we discovered when she was born. We made it through, and so will y'all! It is challenging but does not last forever. Margot just turned 4, and is so happy and healthy!
I am so sorry you got less than stellar news, I will keep all of you in my prayers. I was cleft palatte baby 38 years ago. At that time they repaired it at 18 months old and there were lots of ups and downs (speech problems being one of the worst) and other surgeries along the way. I came out the other side great. There were/are times my mom will she feels like she must of "done something" to cause it and feels guilty. I feel like it was just the way God decided I was going to be.
My beautiful daughter was born with a cleft palate only and we didn't know about it until the day after she was born. When we were told the news I remember feeling devastated ONLY because I was scared of the unknown. Now, more than two years later, I am so regretting having been so scared. I know I couldn't have helped it but it really wasn't as bad as I had imagined, and she is amazingly perfect and talking up a storm today! The hardest part was not being able to breastfeed her and exclusively pumping for a good year (and all the fun stuff that comes with that). She had corrective surgery all 10 months, recovered quickly, did some short term speech therapy and is doing great. Do I wish she hadn't been born with a CP? Sure, it would always be nice if everything in life could go swimmingly and according to our plans...but we know that they don't. The bumps in life make us stronger and resilient so I'm thankful we went through that always cording always cording family.
Sending you love & prayers, but most importantly strength during this difficult time! January 2016 we received news that our third child would be born with a severe heart defect. That time surrounding the diagnosis and the months before her birth were stressful, anxiety filled and it was difficult to think positively. Fast forward to today, she has undergone heart surgeries, cath procedures, many many tests and painful experiences BUT we wouldn't change a darn thing. She has completed our family, taught us sacrifice, thankfulness and loving through the tough times. Find your new community of support, cherish the love from friends and family & accept help. He will teach you the greatest lessons!
So brave of you to share, thank you. Standing in support with you and always inspired by you. God is good...all the time and He never gives us more than we can handle. Keep going momma! You've got this!
My brother was born with a cleft palate and cleft lip. Toughest, sweetest baby and toddler. Never affected him or how he grew, learned, and interacted with others. He is 18 now, super outgoing, has a sweet beautiful girlfriend. I forget he was born with a ‘defect’ - nothing defective about him. God does amazing things with people and situations the world says are bad and broken. <3
My little boy was born with a cleft nose...we had no clue until he was born and it was a lot to process. Honestly, I didn't even know a nose could have a cleft. Never even thought to worry about that during my whole pregnancy. We opted for plastic surgery at 8 months old and its hardly noticeable now. I was a ball of emotion when he was born. I felt so sad and protective of him but also grateful that it wasn't anything worse. It will take some time to process but you will come to terms with it and he will be okay as well. Thank God for modern medicine and the power of a mother.
So sorry that you are dealing with this. It's hard when you are given news that your children will have different struggles and abilities. Your older boys will learn love and compassion in a whole new way, and that is beautiful. Praying for you all as you digest this news and what it will mean.
Oh mama, I'm so sorry you're dealing with this. My daughter was diagnosed with a heart defect at 2 days old. We were told it was one of the better defects to have because it required a single surgery. Meant to make us feel better, but still, hard to hear. She is doing amazingly well right now though, expected to have no restrictions. Doctors can do amazing things nowadays. I'll be keeping you, your family, and your little man in my thoughts and prayers. Congratulations on your amazing business!
Life is so hard sometimes! I wanted to reach out because my second was born with a cleft lip and palate and it's not something we saw on the ultrasounds so it was a huge shock when she was born. She is now 6 and she is great. Most people can't tell she even had surgery which I love to hear.. but we still deal with issues from her clefts. Anyway... I am totally open to talk if you wanted. It will be very different but doable. I remember her drs saying the same thing... this is the birth defect to get if your going to get one. Now... that doesn't make it any less hard on you! But please reach out if you would like to talk about what to expect, etc.
My little brother was born with a cleft lip and palate 28 years ago. The surgeries are more advanced now, which will be easier on him and YOU and your family. Also, Children's Mercy Hospital is a great hospital to work with. We lived in Raytown for 8.5 years and my brother had multiple surgeries there. As far as feedings go, if you want to try breastfeeding know that it will be more difficult depending on the severity of the cleft. If you don't want to try breastfeeding ask Children's Mercy for special nipples designed for babies with cleft lips and palates, it makes feedings so much easier. The hole is much larger than traditional baby bottle nipples. Bottle feeding is really the easiest for babies with cleft lips and palates. I hope this helps!
That would be soooo hard! My little cousin had a cleft lip, my husbands aunt was adopting and it was a shock. They did it anyways, and let me tell you....it was a little hard at first, but you can hardly tell now! And he gets all the girls now that he's 17, they think the scar is hot Haha! I also had a friend where all her children were born with a cleft palate!! All of them! The first while is not super fun, but it really has turned out fine for all of them. You totally got this!!!
It's so tough to hear that you won't have a perfectly healthy baby, but in this day and age it's completely fixable problem. Your little guy is so lucky to be born into a wonderful supportive family. Wishing you guys the best xo
I just wanna validate you. I'd be freaking out too cause I'm so good at that and I hate when people are like "there there it'll all work out." So I'm just sending you a ton or prayers and hugs from over here in Utah. I've loved your blog for a long time. Kilee. You are so awesome! Blessings on you.
You definitely have a lot going on over there, and I can only imagine how overwhelming it must feel to have to deal with so many things at once. Personally, I was worried every time I had to have an ultrasound because of the “what ifs”. Part of me wanted to know if something wasn’t quite right, and then the other part of me thought “I’d rather not know”. And the internet...not always a great thing to be able to look up the things we are told! It’s often times scarier that the unknown. With that being said, I did want to share that as a speech pathologist I have had the opportunity to work with many babies that were born with cleft lip and/or palates, particularly with respect to the feeding aspect, and I wanted you to know that you won’t be alone. You will have a whole team behind you to help you support your little man through it all. Once you have that second ultrasound and get a clearer picture of the type of cleft and what the plan will be, you will hopefully feel a little less scared and a little more in control and of the whole process. Hang in there!
Thank you for your willingness to share your life with us. We don't expect you to be perfect, and it's ok to not be ok about this. It doesn't mean you don't have faith if you have to grieve for the "perfect" baby we all hope to have. Give yourself time to be mad/sad/angry...God knows it anyway and He can handle all of our emotions. I'm praying for God's special care over your son and that your family will be even stronger in love and unity because of this difficulty. You are loved.
Thank you for sharing your heart so openly. Your words resonated with me, as I felt the same way when we found out our little guy had cleft lip and palate. There are SO many unknowns and it is scary. He just had his last surgery this summer, and he is a thriving, normal, happy, little boy. The journey will be hard at times, but you will be amazed at the strength and resilience of your little one and your family, too! You guys will make it through and come out stronger. Take heart! Sending you prayers, strength and love!
I love your honesty! It can’t be easy to share that news with everyone, but I’m glad you did. It would have to be hard to have that shadow on your pregnancy, but I’m sure everything will work out in the end.
I was born with a cleft lip and palate. Surgery at 3 months old and again at age 7. I'm 30 now and I imagine that procedures have improved a lot. It's not something I would have chosen, but it's pretty minor compared to other issues that others live with. It's something I struggled with as a kid, but I grew to accept and not worry about. Be still and know that God is in control. He does not make mistakes. Your son will be amazing. Hope the rest of your pregnancy and the labour goes smoothly.
First, congratulations as you look toward the arrival of your next child. Being a mother is wonderful and terrifying all rolled into one. My niece Jasmine Hulls. I have a son that was born with a cleft lip and partial cleft palate in 1974. I have followed the developments in this health area since that time.
There are fabulous new interventions that really are life changing and enhancing - seriously amazing. While I was pregnant there was not technology available to tell us if our child might have serious issues. So, one of the recommendations my doctor gave all his expectant mothers was to use a Vitamin B (folic acid) supplement. Research now clearly shows a link. I was pretty lax about taking it but about 2/3 of the time I took my daily vitamin as prescribed. Specialists that worked with my son said that my doctor's advice prevented the palate from being much more serious (based on other indications involved with the cleft). My husband had an uncle with a cleft lip, but they say the genetic connection is very small. I had been taking some medications at the time I became pregnant - our minds reach for explanations and solutions - and come up with lots of random suppositions. Some may be true or partly true, but the bottom line is that we don't usually know cause or what prevents this issue.
What we do know is that there is help and that there is hope. Usually, although there may be several surgeries, the repairs are very effective and leave little evidence of the cleft. Yes, it is super hard work to care for every child with a medical issue, AND it is super hard work to raise every child.Yet it is so worth it. It may be hard to set aside doubt or fear, but things will be OK eventually what ever happens, or how it happens. Email me if you need a place to 'vent' ever. liforames@gmail.com And I would so love to see your new arrival when that event occurs.
Hi Kilee, I only found you this morning, I love reading your blogs and really feel for you in this latest news. My two youngest granddaughters, now aged 14 and 11, were diagnosed with Cystic Fibrosis at their 20 week scan. The news of the first one was a complete shock, the second was still a shock. But we have two beautiful girls, who cope so well with thei continuing health problems. Praying for you and your lovely family ��
Praying for you and your family! I know first hand these anxieties as my oldest had a cleft lip and palate, you can do this Mama!! My daughter is now 5 and doing awesome, it was challenging in the beginning but her normal is a little different but she’s okay! ((HUGS)) God gives his toughest battles to his strongest soldiers!!
Makayla was Born with a cleft palate and Rob's sister was born with both a cleft lip and palate. (Though it's not supposed to be genetic) Rob's mom had to feed his sister with a syringe! Luckily technology is better than almost 40 years ago. Makayla used a pigeon nipple. One thing that I was disappointed with on social media is there isn't a cleft community! Moms getting this info need people who have been there saying "yes, I know it's hard, we've been there." Our feeding therapist at the hospital when she was born was so helpful! Makayla had her (soft) palate repair at 6 months. By 7 months she was able to use a normal bottle and even learned how to nurse! It took her a few months to nurse effectively, so I still pumped (at the same time she was drinking a bottle). Weight gain and feedings were stressful sometimes until then. She basically skipped size 9m clothes because she grew so fast after that! She did speech age 3-present, but now it's normal kindergarten misspeakings. PM on FB if you want more details/need to vent/etc. I can also send you links from my blog of what I wrote abt that time period. Oh, and when we went in for her surgery, there was a little 4 month old boy who was having his cleft lip repaired. He had the cutest big grin!
I'd just like to say congratulations on this new bundle of joy! I completely understand your frustration and worry, but I'd like to offer some encouragement from my personal experience. I was born with a unilateral cleft lip and palate. Yes, it has been a struggle at times, but to be honest I wouldn't change it even if I could. The experiences I've had with doctors, other patients, parents of children with clefts, even complete strangers have helped shape me into who I am. I've been able to be an encouragement to those struggling with similar things, which in part led me towards choosing a career in medicine. I'd love to chat with you and answer ANY questions you might have regarding a cleft baby... I have lots of great resources I'd love to share with you if you'd like! God bless!!
One of the prettiest and kindest girls I have ever known was born with a cleft palate and (by my description) you can see that it didn’t affect her in the long run at all. You are an amazing mama and although this is hard to hear news, you guys will get through this and it will be a distant memory eventually. I will be praying for you and the baby.
Thank you for sharing your fears and struggles. It can be so hard to be transparent in the time we're living but, it's truly inspiring. I'm also a mama of four sweet boys and I'm praying for you! For peace and comfort, for the Lord's blessing and guidance and for your precious new baby to be healthy and perfect in the way God created him to be. Stay strong and please don't stop sharing the difficult moments. Much love and prayers, mama! <3
Thank you for sharing your heart. My best friend has five boys and the baby was born with a cleft palate. He had the palate repair and is doing so well in kindergarten now. He is the cutest thing I have ever seen(: The older boys actually helped a lot and it is life as normal (crazy) for them now. Have faith and know you are not alone. On a different note - my husband and I also run a business together. No one has any clue how much work it is unless they do it themselves. We often have 60-70 hour weeks. My only advice is to keep God in the center of your business and lives, and to take vacations. We didn't leave our business for 7 years. Vacations are the only thing that have kept us afloat for 15 years. Blessings to you.
I have a friend that had 2 babies born with a cleft lip only. They're both school age now with my kiddos and you'd never know there was anything different about them. They're surgeries were perfect and they are amazing tiny humans today. Praying for you all through all the stress!!
Good morning. I follow you on IG (and have been wearing/loving your earrings for almost a year now)...but this was the first blog post I've ever read of yours. How providencial. Our daughter was born with cleft lip and cleft palate (on both sides and hers was a very severe case). She is now 2 and has undergone 2 separate surgeries. It feels super overwhelming now, but the docs and entire cleft team are so helpful and great at what they do. Keep your faith - that's what got us through. Knowing that nothing surprises God and that he formed our daughter perfectly with this "imperfection".
My mom was the guinea pig child in 1950 for what is now the Operation Smile surgeries, now you can hardly tell that she had any birth "defect" at all. Things have come such a long way since then. Every time I see someone with a cleft lip surgery mark I just smile and think that my mom had something to do with that. It's never great to hear that your child won't come out 100% physically perfect, but we do know that Heavenly Father thinks they are, and that's what matters.
Our adopted daughter has a cleft palate and has come through all the surgeries ok! She's 10 now and it barely affects her. The biggest issue she actually has is with her ears. She has tubes in and will permanently. Other than that, it doesn't affect her life in great detail. Praying for you! It will be ok!
Prayers for you and your family as you go thru this.
Although not the same situation I have a special needs son who is now 8 years old. Learning there could be/is something wrong with your precious baby is heartbreaking, terrifying and just all around awful. My unsolicited advice would be to feel your feelings. That sounds strange, but hear me out. I was surrounded by a huge support system which is incredible and I hope you have one as well. However, it can be a negative at times as well. Don't let anyone tell you how to feel. Sometimes ppl can be trying to be encouraging by telling you not to worry or that you shouldn't worry etc but don't feel guilty about whatever you are thinking and feeling. It was almost like a grieving process for me to let go of the expectations and ideas I had for my child and I had to go through that to get to the other side.
It is always hard to hear your baby or child might have something challenging for them. Although I don't have a child with a cleft palate or lip I do have one with Autism, Sensory Processing Disorder and Anxiety. To say it has been a rough road is true. But there are so many amazing medical surgeries and treatments out there for children who have major abnormalities! No one nor is anyone's family perfect. You will go through all the stages of grief and maybe even more than once and that is okay. It is how our minds process things. As frustrating as it is to hear the doctors are correct if you had to choose for something to be wrong this is what you would want to choose. This challenge is something you can do something for and your child can get over it. Know God loves you and your sweet family! You also have a whole bunch of bloggers that love you, will be praying for you, and cheering you guys on as well. From one SN (Special Needs)Momma to another: YOU GOT THIS! XOXO Kirsten, Bountiful, UT
At my 20 week ultrasound we were also told that our baby had a cleft lip/possible cleft palate, as well as a chance of having Down syndrome. While we we were so happy to learn we were having a girl, it was devestating to hear the other news. I have never felt such strong emotions, both good and bad. We were referred to fetal specialists, and they did many tests and many ultrasounds over the last 5 months of my pregnancy without any conclusive answers. It was the hardest 5 months of my life living with that uncertainty. At one point I had to decide to just let it be, and focus on the fact that I was bringing a new life into this world. After all of that stress she was born completely healthy in July, with only a higher arched palate. I know how lonely it can feel to go through something like this, so I hope by sharing, some of that burden goes away. I will be sending thoughts and prayers your way!
Our son colton was born with a cleft lip and palate 3 1/2 years ago. I too remember feeling like it was something that I had done,.. was it the stress of teaching a really hard group of kids during the diet trimester, was it lack of some sort of nutrient in my diet, was it that one day that I went running when it was too warm outside? Although they say not to blame ourselves that part always weighed heavily on my mind. When Colton was born his cleft was quite wide and it was kind of shocking to see, but I felt instantly In love with him and his super wide cry! The nurses all gave us extra love and attention because of his condition bit mainly commented on his sweet and calm nature. I was glad that I knew about his condition while I was pregnant, because being a first time mom I didn't know what to expect with a newborn, nonetheless a child that would need so much extra care in that first year and it gave me the time to research. I felt that googling was a double edge sword, it would make me sad but it also gave me hope to see and hear what others had gone through. The first three months will be the hardest. If your sweet boy does have a cleft palate feeding is the biggest hurdle. I had to try to pump milk then use a syringe to feed at first and then we switched to a haberman feeder. At 4 months he had the lip repair and he looked so different after the surgery. I remember being surprised by the fact that I was mourning the loss of his superwide smile while holding him in the recovery room. He also had a stint placed in his mose to help rebuild the bridge. I was also surprised at how fast babies heal. He seemed to be trying to smile again within 4 days! Making the transition to solid food was interesting because he would frequently have whatever he ate come out of his mose, but I don't think it ever bothered him. At 10 months he had the palate repair, which is a bigger surgery and longer recovery. One tip I have for surgery recovery is to find a pair of comfortable Velcro "no-no's" that are slimmer than the bulky ones that they give you at the hospital. After that recovery life got So much easier, a couple pairs of tubes and some speech therapy and Colton is just like any other rambunctious, monster truck loving three year old. I know he will have challenges ahead but his spirit is so strong I know he will be fine. I'm sorry for this to happen to you and will not sugar coat that it is easy, but you are a mom of 4 boys- you can handle anything.
A good friend of ours has a 10 month old who was born with a cleft palate and lip. She was able to breastfeed and then switched to bottles. The surgeries were completed and she is such a beautiful and happy baby. Hey we're initial told it would take 15 surgeries over several years, but they decided to consult with another doctor and it was changed to 3 surgeries total. It helped that they had family help care for their older children during and after the surgeries. God will provide and give you strength and comfort as you hold to your faith!
My second son was born with a bilateral complete cleft lip and palate (and gumline, no one ever mentions the gumline). Hugs to you! We did not know before he was born and for that I am so grateful because it would have only made me worry for the rest of the pregnancy. He was born, they told us what it was and we just gathered our team together to deal with it. We live in Waco,TX and travel up to Dr. Genecov in Dallas. His team is the International Craniofacial Institute - Cleft Lip and Palate treatment center. Yes, this diagnosis is a challenge but it is very doable! The docs know exactly what to do!! If you do get this diagnosis, I would love to support you in any way that I can, share pictures, treatment plans,timelines, feeding struggles, etc. Please don't hesitate to contact me via email!
I am sure that this is very difficult for you and your family. I will be praying for you guys that things from here on out will go as smooth as they can.
Our oldest was born with a cleft palate. It is a little difficult at first (feeding issues, sleep issues and weight gain). But, you will get it! Dr. Jiang at Children's Mercy is amazing! I trust him 100%! He fixed our little guy at 15 months old and he has no lasting issues!!! Thinking of you all!
Thank you for sharing your story. News like this can be overwhelming, but it sounds like you have a great support system. Know that there are many resources and organizations to assist you and your little one on the way. Shriners Hospital is a wonderful organization. The Chicago hospital has a cleft lip and palate/craniofacial team and works with families from the MO area. They will meet with families that are expecting to answer questions. Below is a link to the website. Sending positive thoughts for the remainder of your pregnancy. https://www.shrinershospitalsforchildren.org/Locations/chicago/About/About-Us
I'll be praying for your family!!
ReplyDeleteThank you for sharing. I’ll be praying for y’all. We are all beautiful and unique creatures made in the image of the most high God. As humans, we tend to forget that but it always helps me to remember when I’m down. Take heart, God takes care of those that belong to Him.
ReplyDeleteMy oldest was born with a cleft palate, and we didn't know about until after he was born. Your baby is perfect and you're the perfect mom for him. Life will be different for him and for you, but that doesn't mean it will be bad. You can do it.
ReplyDeleteOh honey! So sorry for this unexpected news - that can't be easy. We are all thinking of you and cheering you guys on! But please know that YOU WILL BE IN GOOD HANDS. My only (unsolicited) advice is to "reframe": your little guy WILL be healthy, it just will just be a little different than what you're used to. You will get an awesome medical team to help you through this and make the best choices for him. Sending hugs from Wisconsin.
ReplyDeleteI'm really sorry for your work load and this heavy news. I know things will work out, but as a mom you want to protect your kids from everything! When you find out news like this before they're even born it is only natural to feel like you've already failed at protecting them, but that's not the truth! Heavenly Father knew you could be trusted with an extra precious soul. Remember that and also remember that modern medicine is just one of the many ways in which He sends us miracles. Hugs and prayers, Kilee.
ReplyDeleteI will say a little prayer for you and your family during this time. I did wanted to comment with my experience with Cleft lip and cleft palate babies. While I was not a mother to a cleft baby, I am a sister to one. My mom and dad were completely surprised/shocked 28 years ago when my brother was born. Needless to say, lots of hard times, ups and downs and surgeries but he is a happy, healthy and HUGE man now! I'm sorry because I know this is a tough thing to go through but just know, you've got this!
ReplyDeleteThere is no doubt you can do this [all of it]! God gave you this special tiny person because he knew you were the perfect momma for him. Congratulations on all of the wonderful things baby and business :)
ReplyDeleteFinding out the news that your little one isn't 100% healthy is definitely hard to process. We found out at 18 weeks that our little girl had Spina Bifida. We were told that she would be paralyzed from at least the waist down and wouldn't be able to feel either. I know that coming from an outsider it may be hard to believe, but regardless of 100% healthy, having a cleft lip or a cleft palate your baby is going to be amazing and will be such a happy little man. You, your baby and your family will be in our prayers are you find out more.
ReplyDeleteThe unknown is scary for sure. But, my daughter was born with a cleft palate. Her hard and soft palate did not develop but her lip was fine. She required the use of a Haberman bottle which is not scary at all and was only allowed thin liquids until surgery at 11 months. That was the hardest part. Her going into surgery and her being in pain afterward. At two years old, she started speech therapy through 7th grade. And braces were definite at the usual age. She's now 19 and you would never know she had any type of birth defect by looking at her or hearing her. You wouldn't know anything was wrong with her at 2 years old unless you heard her at which she was only a bit nasaly in her talking. Speech was not delayed and there were no breathing difficulties. Your baby is healthy! He's just going to have some obstacles that you all will be able to manage together. I hope this helps ease your anxiety. Prayers for your family.
ReplyDeleteSending love and prayers regardless of the outcome. I know you all will love him dearly no matter! xo xo
ReplyDeleteThe unknown is scary. My daughter was born with a cleft palate. Her hard and soft palate did not develop at all. Her lips was fine. She only needed to use a Haberman bottle to feed and strictly liquids until surgery at 11 months. That was the hardest part. Her going into surgery and seeing her in pain afterward. At 2 years of age, she began speech therapy lasting through 7th grade She had no speech delays or breathing difficulty. No physical evidence of her genetic deformity. And braces were a definite at the usual age kids get braces. She's no 19 and you would have no clue anything was ever wrong with her. Even at 2, it wasn't evident except she was nasaly when she spoke. Your baby is healthy! He's just going to have some extra work in his future but it will all be manageable with the help of his momma! Prayers for you and your family.
ReplyDeleteHow heavy we carry the burdens of our children.. The same way that God carries our burdens for us. God made you perfect for your sweet little guy...God made you protective and loving just for him. He picked you to be his mom for a reason. Medical advancement is phenomenal for this. While it's not a uncomplicated road, it's a road that has a successful ending. How beautiful is a mama's love for her baby? Please take care of yourself. Seek out care for yourself. Accept help, talk about it, draw strength from others.
ReplyDeleteSuch a beautiful message. Thank you!
DeleteWhat a beautiful message! Thank you.
DeletePrayers for peace as you process! My oldest had a cleft palate that we discovered when she was born. We made it through, and so will y'all! It is challenging but does not last forever. Margot just turned 4, and is so happy and healthy!
ReplyDeleteLots of prayers for you and your family! I’m sorry you have to go through this difficult time.
ReplyDeleteI am so sorry you got less than stellar news, I will keep all of you in my prayers. I was cleft palatte baby 38 years ago. At that time they repaired it at 18 months old and there were lots of ups and downs (speech problems being one of the worst) and other surgeries along the way. I came out the other side great. There were/are times my mom will she feels like she must of "done something" to cause it and feels guilty. I feel like it was just the way God decided I was going to be.
ReplyDeleteMy beautiful daughter was born with a cleft palate only and we didn't know about it until the day after she was born. When we were told the news I remember feeling devastated ONLY because I was scared of the unknown. Now, more than two years later, I am so regretting having been so scared. I know I couldn't have helped it but it really wasn't as bad as I had imagined, and she is amazingly perfect and talking up a storm today! The hardest part was not being able to breastfeed her and exclusively pumping for a good year (and all the fun stuff that comes with that). She had corrective surgery all 10 months, recovered quickly, did some short term speech therapy and is doing great. Do I wish she hadn't been born with a CP? Sure, it would always be nice if everything in life could go swimmingly and according to our plans...but we know that they don't. The bumps in life make us stronger and resilient so I'm thankful we went through that always cording always cording family.
ReplyDeleteSending you love & prayers, but most importantly strength during this difficult time! January 2016 we received news that our third child would be born with a severe heart defect. That time surrounding the diagnosis and the months before her birth were stressful, anxiety filled and it was difficult to think positively. Fast forward to today, she has undergone heart surgeries, cath procedures, many many tests and painful experiences BUT we wouldn't change a darn thing. She has completed our family, taught us sacrifice, thankfulness and loving through the tough times. Find your new community of support, cherish the love from friends and family & accept help. He will teach you the greatest lessons!
ReplyDeleteSo brave of you to share, thank you. Standing in support with you and always inspired by you. God is good...all the time and He never gives us more than we can handle. Keep going momma! You've got this!
ReplyDeleteMy brother was born with a cleft palate and cleft lip. Toughest, sweetest baby and toddler. Never affected him or how he grew, learned, and interacted with others. He is 18 now, super outgoing, has a sweet beautiful girlfriend.
ReplyDeleteI forget he was born with a ‘defect’ - nothing defective about him. God does amazing things with people and situations the world says are bad and broken. <3
My little boy was born with a cleft nose...we had no clue until he was born and it was a lot to process. Honestly, I didn't even know a nose could have a cleft. Never even thought to worry about that during my whole pregnancy. We opted for plastic surgery at 8 months old and its hardly noticeable now. I was a ball of emotion when he was born. I felt so sad and protective of him but also grateful that it wasn't anything worse. It will take some time to process but you will come to terms with it and he will be okay as well. Thank God for modern medicine and the power of a mother.
ReplyDeleteWe adopted a son with cleft lip and palate and he is going thru surgeries now. You can definitely do this! It WILL be ok. Hugs mama.
ReplyDeleteSo sorry that you are dealing with this. It's hard when you are given news that your children will have different struggles and abilities. Your older boys will learn love and compassion in a whole new way, and that is beautiful. Praying for you all as you digest this news and what it will mean.
ReplyDeleteOh mama, I'm so sorry you're dealing with this. My daughter was diagnosed with a heart defect at 2 days old. We were told it was one of the better defects to have because it required a single surgery. Meant to make us feel better, but still, hard to hear. She is doing amazingly well right now though, expected to have no restrictions. Doctors can do amazing things nowadays. I'll be keeping you, your family, and your little man in my thoughts and prayers. Congratulations on your amazing business!
ReplyDeleteLife is so hard sometimes! I wanted to reach out because my second was born with a cleft lip and palate and it's not something we saw on the ultrasounds so it was a huge shock when she was born. She is now 6 and she is great. Most people can't tell she even had surgery which I love to hear.. but we still deal with issues from her clefts. Anyway... I am totally open to talk if you wanted. It will be very different but doable. I remember her drs saying the same thing... this is the birth defect to get if your going to get one. Now... that doesn't make it any less hard on you! But please reach out if you would like to talk about what to expect, etc.
ReplyDeleteMy little brother was born with a cleft lip and palate 28 years ago. The surgeries are more advanced now, which will be easier on him and YOU and your family. Also, Children's Mercy Hospital is a great hospital to work with. We lived in Raytown for 8.5 years and my brother had multiple surgeries there. As far as feedings go, if you want to try breastfeeding know that it will be more difficult depending on the severity of the cleft. If you don't want to try breastfeeding ask Children's Mercy for special nipples designed for babies with cleft lips and palates, it makes feedings so much easier. The hole is much larger than traditional baby bottle nipples. Bottle feeding is really the easiest for babies with cleft lips and palates. I hope this helps!
ReplyDeleteThat would be soooo hard! My little cousin had a cleft lip, my husbands aunt was adopting and it was a shock. They did it anyways, and let me tell you....it was a little hard at first, but you can hardly tell now! And he gets all the girls now that he's 17, they think the scar is hot Haha! I also had a friend where all her children were born with a cleft palate!! All of them! The first while is not super fun, but it really has turned out fine for all of them. You totally got this!!!
ReplyDeleteIt's so tough to hear that you won't have a perfectly healthy baby, but in this day and age it's completely fixable problem. Your little guy is so lucky to be born into a wonderful supportive family. Wishing you guys the best xo
ReplyDeleteI just wanna validate you. I'd be freaking out too cause I'm so good at that and I hate when people are like "there there it'll all work out." So I'm just sending you a ton or prayers and hugs from over here in Utah. I've loved your blog for a long time. Kilee. You are so awesome! Blessings on you.
ReplyDeleteYou definitely have a lot going on over there, and I can only imagine how overwhelming it must feel to have to deal with so many things at once. Personally, I was worried every time I had to have an ultrasound because of the “what ifs”. Part of me wanted to know if something wasn’t quite right, and then the other part of me thought “I’d rather not know”. And the internet...not always a great thing to be able to look up the things we are told! It’s often times scarier that the unknown. With that being said, I did want to share that as a speech pathologist I have had the opportunity to work with many babies that were born with cleft lip and/or palates, particularly with respect to the feeding aspect, and I wanted you to know that you won’t be alone. You will have a whole team behind you to help you support your little man through it all. Once you have that second ultrasound and get a clearer picture of the type of cleft and what the plan will be, you will hopefully feel a little less scared and a little more in control and of the whole process. Hang in there!
ReplyDeleteThank you for your willingness to share your life with us. We don't expect you to be perfect, and it's ok to not be ok about this. It doesn't mean you don't have faith if you have to grieve for the "perfect" baby we all hope to have. Give yourself time to be mad/sad/angry...God knows it anyway and He can handle all of our emotions. I'm praying for God's special care over your son and that your family will be even stronger in love and unity because of this difficulty. You are loved.
ReplyDelete-Lezlie (Houston, TX)
Thank you for sharing your heart so openly. Your words resonated with me, as I felt the same way when we found out our little guy had cleft lip and palate. There are SO many unknowns and it is scary.
ReplyDeleteHe just had his last surgery this summer, and he is a thriving, normal, happy, little boy. The journey will be hard at times, but you will be amazed at the strength and resilience of your little one and your family, too! You guys will make it through and come out stronger. Take heart! Sending you prayers, strength and love!
I love your honesty! It can’t be easy to share that news with everyone, but I’m glad you did. It would have to be hard to have that shadow on your pregnancy, but I’m sure everything will work out in the end.
ReplyDeleteI was born with a cleft lip and palate. Surgery at 3 months old and again at age 7. I'm 30 now and I imagine that procedures have improved a lot.
ReplyDeleteIt's not something I would have chosen, but it's pretty minor compared to other issues that others live with. It's something I struggled with as a kid, but I grew to accept and not worry about.
Be still and know that God is in control. He does not make mistakes. Your son will be amazing. Hope the rest of your pregnancy and the labour goes smoothly.
First, congratulations as you look toward the arrival of your next child. Being a mother is wonderful and terrifying all rolled into one. My niece Jasmine Hulls. I have a son that was born with a cleft lip and partial cleft palate in 1974. I have followed the developments in this health area since that time.
ReplyDeleteThere are fabulous new interventions that really are life changing and enhancing - seriously amazing. While I was pregnant there was not technology available to tell us if our child might have serious issues. So, one of the recommendations my doctor gave all his expectant mothers was to use a Vitamin B (folic acid) supplement. Research now clearly shows a link. I was pretty lax about taking it but about 2/3 of the time I took my daily vitamin as prescribed. Specialists that worked with my son said that my doctor's advice prevented the palate from being much more serious (based on other indications involved with the cleft). My husband had an uncle with a cleft lip, but they say the genetic connection is very small. I had been taking some medications at the time I became pregnant - our minds reach for explanations and solutions - and come up with lots of random suppositions. Some may be true or partly true, but the bottom line is that we don't usually know cause or what prevents this issue.
What we do know is that there is help and that there is hope. Usually, although there may be several surgeries, the repairs are very effective and leave little evidence of the cleft. Yes, it is super hard work to care for every child with a medical issue, AND it is super hard work to raise every child.Yet it is so worth it. It may be hard to set aside doubt or fear, but things will be OK eventually what ever happens, or how it happens. Email me if you need a place to 'vent' ever. liforames@gmail.com And I would so love to see your new arrival when that event occurs.
Hi Kilee, I only found you this morning, I love reading your blogs and really feel for you in this latest news. My two youngest granddaughters, now aged 14 and 11, were diagnosed with Cystic Fibrosis at their 20 week scan. The news of the first one was a complete shock, the second was still a shock. But we have two beautiful girls, who cope so well with thei continuing health problems. Praying for you and your lovely family ��
ReplyDeletePraying for you and your family! I know first hand these anxieties as my oldest had a cleft lip and palate, you can do this Mama!! My daughter is now 5 and doing awesome, it was challenging in the beginning but her normal is a little different but she’s okay! ((HUGS)) God gives his toughest battles to his strongest soldiers!!
ReplyDeleteMakayla was Born with a cleft palate and Rob's sister was born with both a cleft lip and palate. (Though it's not supposed to be genetic) Rob's mom had to feed his sister with a syringe! Luckily technology is better than almost 40 years ago. Makayla used a pigeon nipple. One thing that I was disappointed with on social media is there isn't a cleft community! Moms getting this info need people who have been there saying "yes, I know it's hard, we've been there." Our feeding therapist at the hospital when she was born was so helpful! Makayla had her (soft) palate repair at 6 months. By 7 months she was able to use a normal bottle and even learned how to nurse! It took her a few months to nurse effectively, so I still pumped (at the same time she was drinking a bottle). Weight gain and feedings were stressful sometimes until then. She basically skipped size 9m clothes because she grew so fast after that! She did speech age 3-present, but now it's normal kindergarten misspeakings. PM on FB if you want more details/need to vent/etc. I can also send you links from my blog of what I wrote abt that time period. Oh, and when we went in for her surgery, there was a little 4 month old boy who was having his cleft lip repaired. He had the cutest big grin!
ReplyDeleteI'd just like to say congratulations on this new bundle of joy! I completely understand your frustration and worry, but I'd like to offer some encouragement from my personal experience. I was born with a unilateral cleft lip and palate. Yes, it has been a struggle at times, but to be honest I wouldn't change it even if I could. The experiences I've had with doctors, other patients, parents of children with clefts, even complete strangers have helped shape me into who I am. I've been able to be an encouragement to those struggling with similar things, which in part led me towards choosing a career in medicine. I'd love to chat with you and answer ANY questions you might have regarding a cleft baby... I have lots of great resources I'd love to share with you if you'd like!
ReplyDeleteGod bless!!
Email: annabellearmitage@att.net
One of the prettiest and kindest girls I have ever known was born with a cleft palate and (by my description) you can see that it didn’t affect her in the long run at all. You are an amazing mama and although this is hard to hear news, you guys will get through this and it will be a distant memory eventually. I will be praying for you and the baby.
ReplyDeleteThank you for sharing your fears and struggles. It can be so hard to be transparent in the time we're living but, it's truly inspiring. I'm also a mama of four sweet boys and I'm praying for you! For peace and comfort, for the Lord's blessing and guidance and for your precious new baby to be healthy and perfect in the way God created him to be. Stay strong and please don't stop sharing the difficult moments. Much love and prayers, mama! <3
ReplyDeleteThank you for sharing your heart. My best friend has five boys and the baby was born with a cleft palate. He had the palate repair and is doing so well in kindergarten now. He is the cutest thing I have ever seen(: The older boys actually helped a lot and it is life as normal (crazy) for them now. Have faith and know you are not alone. On a different note - my husband and I also run a business together. No one has any clue how much work it is unless they do it themselves. We often have 60-70 hour weeks. My only advice is to keep God in the center of your business and lives, and to take vacations. We didn't leave our business for 7 years. Vacations are the only thing that have kept us afloat for 15 years. Blessings to you.
ReplyDeleteI have a friend that had 2 babies born with a cleft lip only. They're both school age now with my kiddos and you'd never know there was anything different about them. They're surgeries were perfect and they are amazing tiny humans today. Praying for you all through all the stress!!
ReplyDeleteGood morning. I follow you on IG (and have been wearing/loving your earrings for almost a year now)...but this was the first blog post I've ever read of yours. How providencial. Our daughter was born with cleft lip and cleft palate (on both sides and hers was a very severe case). She is now 2 and has undergone 2 separate surgeries. It feels super overwhelming now, but the docs and entire cleft team are so helpful and great at what they do. Keep your faith - that's what got us through. Knowing that nothing surprises God and that he formed our daughter perfectly with this "imperfection".
ReplyDeleteMy mom was the guinea pig child in 1950 for what is now the Operation Smile surgeries, now you can hardly tell that she had any birth "defect" at all. Things have come such a long way since then. Every time I see someone with a cleft lip surgery mark I just smile and think that my mom had something to do with that. It's never great to hear that your child won't come out 100% physically perfect, but we do know that Heavenly Father thinks they are, and that's what matters.
ReplyDeleteOur adopted daughter has a cleft palate and has come through all the surgeries ok! She's 10 now and it barely affects her. The biggest issue she actually has is with her ears. She has tubes in and will permanently. Other than that, it doesn't affect her life in great detail. Praying for you! It will be ok!
ReplyDeletePrayers for you and your family as you go thru this.
ReplyDeleteAlthough not the same situation I have a special needs son who is now 8 years old. Learning there could be/is something wrong with your precious baby is heartbreaking, terrifying and just all around awful. My unsolicited advice would be to feel your feelings. That sounds strange, but hear me out. I was surrounded by a huge support system which is incredible and I hope you have one as well. However, it can be a negative at times as well. Don't let anyone tell you how to feel. Sometimes ppl can be trying to be encouraging by telling you not to worry or that you shouldn't worry etc but don't feel guilty about whatever you are thinking and feeling. It was almost like a grieving process for me to let go of the expectations and ideas I had for my child and I had to go through that to get to the other side.
much love, thoughts and prayers
It is always hard to hear your baby or child might have something challenging for them. Although I don't have a child with a cleft palate or lip I do have one with Autism, Sensory Processing Disorder and Anxiety. To say it has been a rough road is true. But there are so many amazing medical surgeries and treatments out there for children who have major abnormalities! No one nor is anyone's family perfect. You will go through all the stages of grief and maybe even more than once and that is okay. It is how our minds process things. As frustrating as it is to hear the doctors are correct if you had to choose for something to be wrong this is what you would want to choose. This challenge is something you can do something for and your child can get over it. Know God loves you and your sweet family! You also have a whole bunch of bloggers that love you, will be praying for you, and cheering you guys on as well. From one SN (Special Needs)Momma to another: YOU GOT THIS! XOXO
ReplyDeleteKirsten, Bountiful, UT
Thank you for sharing. Sending prayers for your family. 🙏
ReplyDeleteAt my 20 week ultrasound we were also told that our baby had a cleft lip/possible cleft palate, as well as a chance of having Down syndrome. While we we were so happy to learn we were having a girl, it was devestating to hear the other news. I have never felt such strong emotions, both good and bad. We were referred to fetal specialists, and they did many tests and many ultrasounds over the last 5 months of my pregnancy without any conclusive answers. It was the hardest 5 months of my life living with that uncertainty. At one point I had to decide to just let it be, and focus on the fact that I was bringing a new life into this world. After all of that stress she was born completely healthy in July, with only a higher arched palate. I know how lonely it can feel to go through something like this, so I hope by sharing, some of that burden goes away. I will be sending thoughts and prayers your way!
ReplyDeleteOur son colton was born with a cleft lip and palate 3 1/2 years ago. I too remember feeling like it was something that I had done,.. was it the stress of teaching a really hard group of kids during the diet trimester, was it lack of some sort of nutrient in my diet, was it that one day that I went running when it was too warm outside? Although they say not to blame ourselves that part always weighed heavily on my mind. When Colton was born his cleft was quite wide and it was kind of shocking to see, but I felt instantly In love with him and his super wide cry! The nurses all gave us extra love and attention because of his condition bit mainly commented on his sweet and calm nature. I was glad that I knew about his condition while I was pregnant, because being a first time mom I didn't know what to expect with a newborn, nonetheless a child that would need so much extra care in that first year and it gave me the time to research. I felt that googling was a double edge sword, it would make me sad but it also gave me hope to see and hear what others had gone through. The first three months will be the hardest. If your sweet boy does have a cleft palate feeding is the biggest hurdle. I had to try to pump milk then use a syringe to feed at first and then we switched to a haberman feeder. At 4 months he had the lip repair and he looked so different after the surgery. I remember being surprised by the fact that I was mourning the loss of his superwide smile while holding him in the recovery room. He also had a stint placed in his mose to help rebuild the bridge. I was also surprised at how fast babies heal. He seemed to be trying to smile again within 4 days! Making the transition to solid food was interesting because he would frequently have whatever he ate come out of his mose, but I don't think it ever bothered him. At 10 months he had the palate repair, which is a bigger surgery and longer recovery. One tip I have for surgery recovery is to find a pair of comfortable Velcro "no-no's" that are slimmer than the bulky ones that they give you at the hospital. After that recovery life got So much easier, a couple pairs of tubes and some speech therapy and Colton is just like any other rambunctious, monster truck loving three year old. I know he will have challenges ahead but his spirit is so strong I know he will be fine. I'm sorry for this to happen to you and will not sugar coat that it is easy, but you are a mom of 4 boys- you can handle anything.
ReplyDeleteA good friend of ours has a 10 month old who was born with a cleft palate and lip. She was able to breastfeed and then switched to bottles. The surgeries were completed and she is such a beautiful and happy baby. Hey we're initial told it would take 15 surgeries over several years, but they decided to consult with another doctor and it was changed to 3 surgeries total. It helped that they had family help care for their older children during and after the surgeries. God will provide and give you strength and comfort as you hold to your faith!
ReplyDeleteMy second son was born with a bilateral complete cleft lip and palate (and gumline, no one ever mentions the gumline). Hugs to you! We did not know before he was born and for that I am so grateful because it would have only made me worry for the rest of the pregnancy. He was born, they told us what it was and we just gathered our team together to deal with it. We live in Waco,TX and travel up to Dr. Genecov in Dallas. His team is the International Craniofacial Institute - Cleft Lip and Palate treatment center. Yes, this diagnosis is a challenge but it is very doable! The docs know exactly what to do!! If you do get this diagnosis, I would love to support you in any way that I can, share pictures, treatment plans,timelines, feeding struggles, etc. Please don't hesitate to contact me via email!
ReplyDeleteI am sure that this is very difficult for you and your family. I will be praying for you guys that things from here on out will go as smooth as they can.
ReplyDeleteOur oldest was born with a cleft palate. It is a little difficult at first (feeding issues, sleep issues and weight gain). But, you will get it! Dr. Jiang at Children's Mercy is amazing! I trust him 100%! He fixed our little guy at 15 months old and he has no lasting issues!!! Thinking of you all!
ReplyDeleteThank you for sharing your story. News like this can be overwhelming, but it sounds like you have a great support system. Know that there are many resources and organizations to assist you and your little one on the way. Shriners Hospital is a wonderful organization. The Chicago hospital has a cleft lip and palate/craniofacial team and works with families from the MO area. They will meet with families that are expecting to answer questions. Below is a link to the website. Sending positive thoughts for the remainder of your pregnancy. https://www.shrinershospitalsforchildren.org/Locations/chicago/About/About-Us
ReplyDeletePraying all goes well for your little guy. I hope you found some relief through blogging about this and these wonderfully supportive comments. Hugs!
ReplyDelete