Neonatal Marfan Syndrome & How it Affects Denver
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- Опубліковано 17 вер 2024
- Our little fighter Denver & his fight with Neonatal Marfan Syndrome. He is severely affected & we are working closely with his doctors to learn more about him & what we can do to give him the best quality of life possible. we are still in the depths of appointments, surgery plans & tests. Although this is more of an informative video, I would love for you guys to know Denver & all that he loves to do & how much joy he brings to everyone around him. He is so loved and he inspires me every day with how strong & happy he is throughout everything🤍
Link to the Marfan Foundation's Info sheet on Neonatal Marfan Syndrome:
marfan.org/wp-...
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Thank you very much for taking the time to learn about Denver & how strong he is!
You may be sad, overwhelmed, shy, and any other things that you mentioned, but what shines through on your videos is what a loving and ‘never give up’ mama you are! I love that your husband is a rock for you and the boys. Praying for the boys and you and your hubby. ❤️❤️
Thank you so much! You are so kind 🤍🤍
Amen Judith. God bless you as well.
I have just seen Denver and he has captured my heart .. what a precious little fella he is❤ His smile is riveting ❣ Thank you for sharing him with us. 🙏🌻
@@barbaradeschamps4532 thank you for watching 🥹🥹🥹🤍
@@louettesommers8594 🤍🤍🤍
Denver is such a precious baby. There is such a sweetness and kindness about him that is so endearing!❤
I’m glad that it’s showing through the camera, he is such a sweetheart and when he smiles or laughs it really is contagious. He is such a sweetheart even on his hardest days ! Thank you 🥹🤍
He is living his best life.
This poor baby has so many things wrong with him. I would imagine he is in a lot of pain. I had tears in my eyes when he was smiling. I ask everyone on here to please keep Denver and this family in your prayers. Even one little prayer times all of us will really help. Sending lots of love ❤️
Thank you so much 🤍 he is definitely uncomfortable especially in certain positions :( breaks my heart, we are working to make his muscle stronger but his severe low tone is stacked against that , it will be a process :( thank you so much for your kind comment & being so supportive of Denver ❤️🤍🥹
I would NEVER tell anyone their baby has so many things with them ! That’s just rude and wrong 😢All I see is a beautiful bright eyed little boy with a lot of spunk and a happy face .. That little giggle melted my heart❤ I wish I could give him a big snuggle 🥰 You’re a great mother and God gave him to you because he knew you would give him all the love and support he needs. Way to go Denver 🎉🎉 ❤❤❤
@@isabellajoyy 😢😢😢😢😊❤😊
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😢
Rrttat
I just wanted to say, in case you haven't heard it today, you are enough. You are an amazing mom and your kids are thriving because you're their mom. Hang in there...
Thank you so much , it’s so kind & an amazing compliment 🥹🤍
sweet sweet baby boy, Denver you are an Angel here on earth. !
Thank you very much, such an amazing soul
For sure!!!!❤❤❤❤
I work as a pediatric OT in early intervention here in the States and just want to say that it is so obvious how much you love both of your boys. I appreciate being able to learn more about the parent/caregiver's point of view and the things that you also experience alongside your child. I'm so glad to hear you're also taking care of yourself - therapy is such an important and helpful tool, and by taking care of yourself you can better take care of him. Looking forward to following along. You're doing great, mama!
Thank you for your comment & for your work!! OT was one of the first to his bedside since day one and they have been so helpful and kind to him. He absolutely loves his OT workers, it is so sweet :) Thank you again very much !!
I just found you and I want to add my thoughts to the ones that the OT shared. I’m a retired nurse that worked with kids with special needs for the last few years I was working.
You are doing an amazing job mom and Ty for educating the public, and myself as well. I was not familiar with your son’s dx and now it know more. I don’t anticipate going back to work, but who knows what the future holds, so I like to keep current as I would likely go back to caring for sick kids again.
I know it is all a bittersweet situation for you and your husband.
Dylan is absolutely precious and I can see the love in his eyes for you💕
I know you face a lot of obstacles, but I also know the pure joy you feel in loving him. I pray for you and your husband, and also for Dylan to do well in his heart surgery and have a speedy and steady recovery.
Hang in there mom, you are Dylan’s world and he is one lucky boy to have you and your husband! ❤
Lean into God when you feel the burden is too much. He will strengthen you!❤
God bless!
@@rhondadavis1483 thank you so much for taking the time to write such a sweet comment 🤍 it make this so much easier on us to have such amazing people like yourself being so supportive & thoughtful towards our family and this road ahead 🤍🥹
@@isabellajoyy you are so welcome. You are in my prayers and you have a new sub with me…keep us updated!❤️❤️
His soul is so pure. He radiates such sweet energy. What a beautiful baby boy. Praying for you guys.
Thank you Amanda ! a lovely comment
Beautiful!
Denver is precious! That giggle when he was playing with the pacifier put the biggest smile on my face. Thank you for sharing your amazing little warrior with us. You are so strong. God bless you and your family with comfort and peace.
It makes me so happy that the video made you happy! He is such a sweetie and so smiley and giggly at this stage, I love it so much 🤍 thank you so much 💖
You are such a strong, beautiful mother. You are doing a wonderful job. From an older mom with nearly grown children, I’m proud of you. Praying for you and your family.
Thank you so much for your prayers! being a mom is such a blessing 🤍
Miracle baby. He’s made it this far! He’s made you the rock he needs. Unbelievable strength even though you may feel shattered.
Thank you ! He really is so strong !!
God placed him in just the right mama's arms, for the best nurturing he could ever have. He's a beautiful little bundle and your love and care for him shines through. I will keep your family in my prayers ❤
Thank you very much, I love him so much and I pray he will get better after surgery.🤍 🤍🤍🤍
And Daddy.
@@bluekatgal7300 especially Alex, he is truly the best father 🤍 we are all blessed for him
Denver is lucky to have such a warm, loving mom and dad. Wishing your whole family easier days ahead. Take it day by day and rejoice in his milestones ❤️🙏
Thank you so much for your kindness 🤍🤍 this is the best compliment 🤍🤍
He has exceptional needs! I have triplets on the autism spectrum. My hearts been broken since day one and I’ve come to embrace the fact that it is what it is 😢 You and your family are special and courageous. I’ll be praying for you all. God bless you all ❤
Have you discovered the channel the fuller fam?? Mama my heart goes for you, it’s hard watching your little ones have things be “harder” for them. We are strong 💪🏻 but i know it’s hard to embrace , especially on harder days 😔 I appreciate the kindness towards Denver & our family and I hope you and your triplets are doing well 🤍🤍
I love his deep eyes. Such a beautiful soul and what a miracle! I absolutely love him!
His eyes are so sweet 🥰🥹
Aww he’s such a clever lil man ❤️ When my son was born, they thought he had Marfans. Eventually, he was diagnosed at 11 (I think) with Ehlers Danlos Syndrome. My son was extremely low toned, couldn’t sit up unaided and missed milestones. He’s doing amazingly now, and I pray your little boy will do the same. 🙏
You’re doing so well speaking in these videos. It must be hard, and it’s okay to be sad at times. ❤️
There are so many similarities as I’ve been learning ! How is your sons heart doing ? 🤍 Denver still can’t sit up unassisted but I’m hoping one day with work he can do that ☺️ thank you for watching and supporting Denver & our family 🤍
@@isabellajoyy You’re welcome, little Denver is an incredible little boy. 🩵 My sons heart at the moment is good 🙏 but his first year was roughest. He had constant apneoa’s, heart murmur, and very prolonged seizures. He was tube fed and his insides were all too floppy, plus a cyst at brain stem. He eventually managed to sit, then to walk, everything was delayed, but he done things in his own time. He was mainly non verbal too. Fast forward to now… He still has seizures. His liver has been a bit poorly and GI issues. However, despite learning delays and him only attending part time school (2.5 hours per day) He’s just completed his HND at college and just scored an A. He will now go straight into year 3 at university. I was told how uncertain his future was, and prepared for the worst at times but he’s continued to defy all the odds, so many times. So miracles do happen 🩵 I know the sadness you must feel, as well as happy moments and intense feelings of love, joy & gratitude. Just know you’re doing a brilliant job with Denver, and he’s an incredible little man, whose capturing new hearts by the day. ❤️ I know you’ll fight to keep him as well as possible, but be kind to yourself at the same time. Reach out for help if you need it and know you’re doing a fantastic job. I was told our special babies are born to special Mama’s. Sending hugs to you both xx 🩷🩵
You're a great mom, don't understate yourself. God bless this little child.
Under estimate yourself, meant to type.
Thank you very much ❤
Denver is such a fighter. That smile of his melts my heart. I am sure his upcoming heart surgery will help him so much. It should improve his energy levels and help with his oxygen exchange. You are doing a great job. It is ok to cry for your children. Even when a fully healthy child gets injured or gets sick we as mothers feel bad. Denver has a lot of severe problems so of course it makes you sad. Plus they are things you can’t fix with a bandaid. It is hard! One day at a time. One procedure at a time. He is in my thoughts and prayers. ❤😊
Thank you for your continued kindness and comments. You are amazing ! 🤍 I know his surgery will give him a better quality of life & hopefully he won’t have to work so hard to do his day to day . 🤍
Making this video makes a difference! My brother was diagnosed with Marfan on his 19th birthday when we found his aorta was enlarged. Looking back he had so many other signs all through childhood but no one knew what they were looking for. Thank you Bella ❤
thank you so much!! I had never heard of Marfan syndrome before Denver, so many people live with it without knowing!! There are signs but with it being such a scale with severity physically to some it can be hard to know unless you get an echo done! How is your brother today? 🤍🤍
You are a great mom. You take such good care of Denver and Dravan.
Thank you Susan , this is the best compliment I could ever receive ❤
This sweet little boy has such an amazing Mother. Praying for you and your sweet family.
Thank you so much, that made my day 🥹🤍
Wouldn't it be great if all of us only knew love, like your little son does? He is an intelligent little boy, you can see it in his eyes, your son is a soldier and you're his warrior, hand picked, you are just as special as your son is, never forget that! Rooting for you Denver💙
Yes I agree completely
🥲 this made me cry. This comment is so kind and your sweet comment made my whole day. I am blessed to have someone so amazing rooting Denver on & watching our family. Thank you so so much 🥲🥲🤍🤍🤍
When I look at this infant, all I see is a beautiful little boy, struggling with health issues, I see strength in him as well as in his mother. I will pray for him. He is a child of God, who is with him at all times. 🥰❤️🙏
Since day 1 it’s been a struggle. His new medication and dose has been amazing for him and truly why I think he’s been happier & stronger lately 💪🏻 thank you so much 🌼🤍
Aw bless him!! I have Marfans and had a spinal fusion for my scoliosis last year! I have various conditions similar to your son but no where near to this extent bless him❤ us Marfs are a fighter and I wish him all the best ❤❤❤
oh, you really do 🤍 before Denver I had never even heard of Marfan syndrome - now i try to learn as much so I can help him the best I can. The facebook support groups have been lovely to help educate me. It really does affect almost every part of the body. How are you feeling now after your procedure? 🤍
@isabellajoyy neither had I, I wasn't diagnosed until I was 21 though which is crazy!! Im doing well thank you❤️ Hope Denver is recovering well from his op.. I will be following your journey xx
Both of your sons are so cute and I love the way your little one looks
Thank you so much ! ❤
Sending so much love and many prayers.
Thank you so very much! Big surgery day tomorrow 🤍🤍
Praying for Denver , you and your family. ❤️
Thank you so incredibly much for your prayers ❤
What a beautiful sweet little guy Denver is. It’s so heartwarming to see how happy he is and how much he is loved. Praying for your family and Denver to stay well and happy.
Thank you so much Trina 🤍🤍 he brings so much light into our lives 💖 thank you for your prayers 🌼🥹
That little giggle! 🥰💕. Such a beautiful blessing in his smile. You are doing amazing, mama!
So sweet ! These past few weeks he has been so smiley & happy 🥹🤍
Beautiful boy, looks so happy playing with you & dad.
Thank you!! He is such a happy boy 🥹🤍
Give yourself credit, you're a strong woman. You've already come this far and just take it a day at a time and cherish the small moments. Wishing you and your family the best.
Thank you so much for taking the time to uplift me, it is so kind 🤍🤍 out for ice cream with the family as we speak enjoying the small moments 🤍🤍
Your sweet boy is absolutely beautiful. I’m a pediatric nurse and I’ve seen miracles. Praying for your family and darling baby boy ❤
Thank you so much for your work with our kiddos, it means so much 🤍🤍 & thank you so much for your kindness towards Denver and our family ❤️🤍
He's such a beautiful boy. I really hope his surgery helps him feel more comfortable and you are able to enjoy your time together. ❤
Thank you so much!! we are hoping for the same :) the cardiologist is confident that he will feel so much better after surgery also so that brings me so much peace of mind :)
@@isabellajoyy I will pray for you and your family, keep having hope even when things might seem hopeless..your love is the most important thing for your son. As a mother, I can only imagine how hard it must be for you but you're doing an amazing job 😊
Denver is absolutely precious. His little laugh when he was playing with his binkie was adorable. You’re a wonderful advocate for your son. ❤
Yay! I thought it was cute too so I had to keep it in 🥹 glad you also enjoyed it 🥹🤍 thank you so much
@@isabellajoyy Yes that deep little laugh is so sweet!!!
@@78rawbanana we always say his laugh comes from deep within! It’s so different then his other little noises 🥹🤍
Dear Bella, you are one amazing Mom. You are well spoken and have no need to be nervous about that.. So many prayers and wishes for Denver and your family.. He's making lots of progress thanks to you and your husband.
Sending love and support. 💜🌻💜
Thank you so much Marilyn 🤍 🤍
Praying for Denver’s up coming surgery, also praying for you and your family 🙏🏽🙏🏽❤️
Thank you very much
Thank you for sharing Denver with us, he deserves to be loved just as much as any other baby! His little giggle just melted my heart! ❤ Give him a gentle hug from this internet Auntie! (One for you as well 🫂 )
Thank you!! This comment made me smile so big ! he is such a sweet heart and his noises are so cute ! i will give him a hug for you when he wakes :) ❤
Your son has really touched my heart this evening! He is precious 💖 stay strong momma xo
Thank you for your kindness 🤍🤍🤍💗💗
Denver is so lucky to have a mommy like you. My girlfriend died at age 39, but went through those years without knowing she had Marfan disease. She had a throb in her neck after having a flu and was diagnosised as having MD. I don't know if anything could be done at that she. God bless you and Denver. May God give you the strength to help your baby every day.
I’m sorry about your girlfriend 😔 it can often go unnoticed in so many people with the classical Marfan without knowing :( thank you so much for your kind words 🤍🤍
OMG, his happiness and the pure joy in his face when he smiles is contagious and makes you not even realize he has difficulties. He has a fighter soul, I can see it in his eyes. Your son is beautiful and thank you for sharing him with us.
He’s so strong ! True fighter, he’s defied so much already, it makes me be a stronger person watching him! Thank you so much, seeing him happy & smile is so therapeutic 🌼🤍
I have worked with beautiful, loving children with special needs for many years. I currently work with teens in a therapeutic school. Your sons are beautiful and loved, which is why I admire your spirit and heart. If I had one wish right now after seeing Denver's smile (which made me cry), it would be that more babies be loved by moms like you. You are an earth angel and thank you!!!!
What a beautiful comment, just wanted to reach out and say THANK YOU!! you are very kind and thank you for taking the time to make someones day, truly its a light 🤎🤎🤎
You are giving that little guy a great life, regardless of length.
Thank you so so much ❤
You are strong and loving. Hang in there. It's okay to have your feelings. Crying never hurt anyone.
I have a good cry a few times a month . Weirdly enough toys the most on good days when he’s so happy and smiley I just wish I could keep him that happy forever 🤍 he’s so sweet 🥲
I was a Special Needs teacher for 33 years. I can understand only a fraction of what you're going through. But I admire you. I'm sure some days your heart feels broken. But you are giving Denver the best life he could ever wish for.
Thank you so much !! It’s definitely not been easier, I wish I had a better control on my emotions, good days get me the most lately. Thank you for your kindness towards Denver & our family 🤍🤍🤍
He is so precious and I can’t imagine how difficult it would be for you, especially to come online and share the experience. All the best for Denver and your family ❤❤
99 % of people are so kind and nice to Denver & our family and it makes it less scary to come on here and open up about our life
Your love, dedication and commitment is everything. The video of him with his pacifier, him laughing, what a phenomenal little guy, that light is a direct reflection of all the love around him. ❤
Thank you 🥹🥰 that video is so sweet , he’s been so happy this last month I can’t get enough of it ! 🤍🤍
This is the first video I have seen of Denver, all I can say is that he is a sweetheart, that smile melts your heart. I loved how cheeky he was being with his dummy (I'm in the UK, so not sure what you call it in the US)
You are a fantastic Mum and you are very honest about how you feel, this helps other Mums in similar situations.
I will follow Denvers story and send you all love ❤ and strength for his operation
I try to be honest about my feelings because it’s not all been sunshine and emotions all over the place, thank you for saying that 🤍🤍 thank you for leaning about Denver & watching our family 🥹🤍
Lifting Denver up in prayer and knowing he has purpose here on earth. Hang in there Mama.
Thank you so much 🤍🤍
Your such a beautiful good mom, Denver is the cutest sweet little boy.❤ I will keep him in my prayers ❤
Thank you very much! That means so much to us to have him in your prayers ❤❤❤❤
How sweet he is you are a beautiful little boy God bless you and your family 🙏❤️💐
Thank you so much 🤍🤍🤍
Precious little man how heartbreaking. You're his mum for a reason you are special. Keep fighting ❤❤❤❤
Thank you millions 🥹🥰🤍
He is such a strong little boy and i wish him all the best . I hope his surgery goes well and that he recovers fast ❤
surgery went so well 🤍🥹 Thank you so much for these well wishes 💖
I have a friend who has a daughter with Marfans. What her girl has gone through is heartbreaking but she is always smiling with the most beautiful smile. She is now 12 years old. Praying for you and your sweet boy Denver.
It is so hard to see loved ones go through so much, I wish I could take his place and do this all for him. I hope she is well & her heart is doing good! 🤍
@@isabellajoyy it’s been better now but she certainly has had many close calls and very major surgeries. Tons of heart and lung issues that are now stable.
I have another syndrome myself that has caused me to have dozens of major surgeries growing up but they were a cakewalk in comparison. The spinal surgeries she endured were rough but the end results are incredible. Her back is now straight.
Thinking of you both so much, I know it must e hard, I’m happy you have each other 🤍🤍
Bless his sweet little face. He looks to be quite a trooper and the love he gets from his mommy and daddy will see him through no matter what. I know it’s hard for you, but just love him and do your best and give it to God. ❤
Thank you so much, & I have and will continue to do so ❤️🤍 its been so helpful 🤍
Thank you for the courage to talk about your sweet boy. Your anxiety and fear are justified, but in all that, I see such a strong, courageous woman. Nobody knows what it is like to be in your shoes, so just continue to do what you feel is best for Denver. He is blessed to have such a loving mother in his life.
Thank you so much 🥰 I’ve become stronger than I could have ever imagined. Motherhood is a superpower and I will tell that to every mom I know 💪🏻🤍
Awe !!!! That little giggle melted my heart 💕 God picked the perfect mom for him, you are an inspiration, stay strong and have faith that God will carry you all through this journey 🙏
Thank you so very much 🤍 his giggles are heartwarming 🥹🤍
He is absolutely gorgeous. That smile and the sweet sound of his little giggle just made my heart smile. He obviously has your gentle loving spirit. Anyone can see that you feel abundantly blessed with the joy of your beautiful son. You can feel the love he senses. You should be beyond proud of the care, love and joy you and your husband are providing for your boys. Each of you are in my prayers. God has chosen you because you are willing and capable of providing this anazing child with all he needs to experience live and joy in this life no matter what. ❤
Thank you so much patty for your incredibly kind words, that made my day 🤍🤍 we love him so much
What a beautiful boy ❣️ Denver is gorgeous. Seriously I got so much peace watching him. He's such a spiritual being. Wow.
I tell this to my husband all the time, he has the purest kindest soul I’ve ever met, he has so much love & is always so happy and smiley towards everyone he meets. 🥹🥹thank you It makes me happy that it is shining through the camera also 🤍🤍
Sweet mama, I want you to know that a couple of my most favorite actors have Marfan syndrome. There is so many possibilities for your sweet baby and the places he can go and the things he can do are limitless. If nothing else, he will always be your love and your joy and the time that you have is priceless. ❤
Thank you! There are a few famous actors I know that have it :) thank you so much; Denver has been doing so well lately it’s so amazing to watch. 🤍🤍
Don’t apologize for struggling. You are his mama and you are allowed to grieve and mourn the life you expected while also loving the sweet baby you birthed so deeply. Those two things can co-exist.
From one special needs mom to another, give yourself the freedom to feel how you do unapologetically. You deserve that right.
It’s so obvious how much you love Denver.
Thank you so much 😢 up until a few months ago it was realllllly hard. It’s getting easier but it comes in waves. Thank you for being so validating it sometime can be hard to tell anyone how I feel 🤍🤍
❤ what a lovely baby. Blessings to him.. I see him, I smile. I can’t imagine the pain and struggles you have gone through. But we pray for you Mama.
it makes me so happy that he made you smile 🥹 he is so happy and constantly making all of us around him so happy as well 🥰 Thank you so much for your prayers, he goes for surgery in 5 days on his heart, lungs & pectus which we are hoping makes him even happier when he feels better!
Sending you love and support from the U.K, and an atypical Marfans survivor.
It’s a long road, it’s a painful road for everyone in the family, but we fight because it’s all we know. I’m now 37, if that gives you any hope for a fuller life for him.
He will have days where pain is all consuming, and we get mad at everything. Please don’t worry about the scars. As he grows up, he’ll learn that they’re war wounds and we can wear them with pride. We fighters and we are survivors!
You’re doing amazingly! He’s in the best hands with a mum and dad like you guys.
Thank you so much 🤍 I’m in the Marfan Facebook pages and it has really helped me understand some things to look out for in Denver & bring up to our drs. I hope you are doing well 🤍 do any of your family member walk this road along with you?
@@isabellajoyy I have my family with me, always. I’m the only one with Marfans, as I’ve come up via a spontaneous mutation, not via 2 carriers of the gene, which made getting a diagnosis very hard when I was young. It was only really confirmed when I was about 16. My mother and my husband have both researched for hours on how best to help me on days I need it (mostly pain days but pain meds and gentle physio help) and everything is monitored closely by the hospitals.
I will keep all fingers and toes crossed for your sweet boy, and I look forward to following his journey with you.
@@Maybeapotoo the ones around you seem so helpful & supportive 🤍 Denver is also spontaneous. He is currently on atenolol & losartan to help combat his aortic root growth but it’s been growing so quickly :( thank you for your support & for watching our family! 🤍
You are an awesome mum and the bond within your family is incredible
Thank you very much 🌼🤍
He is going through a lot. I am glad to see him smile. He is such a strong little fellow!
He’s so strong, it really makes me be a better person for him seeing him be so happy despite all the things he has to go through 🤍🤍
I think Denver is adorable and you are a great mom. Thank you for sharing this information with those of us that are new to this.
Thank you for taking the time to learn about him & his condition! 🤍🤍
@@isabellajoyy Actually, when my son was in high school he got really sick and the doctor thought it might be Marfan syndrome. He went through a lot of tests and it turned out that he did not. I learned a lot abut this condition. You are all in my prayers! ❤
Praying for you and your baby boy. He is so precious. God will take care of him and you God bless Karen Gregar.
Thank you so much Karen 🤍🤍
My son was finally diagnosed at age 11. Yes it took that long for a doctor to say hey. He has came a long way and is now 21 years old. Never give up hope and have faith.
I've heard others have similar stories to what you mentioned! I've read it can often be diagnosed during eye exams since dislocated lenses are a sign of a connective tissue disorder. It makes me so happy to hear your son is doing well :) Denver goes for aortic root surgery in 10 days and I know it will be amazing for him overall :)
You did a great job. You are a great mother and he is a blessing from God. Praying for your beautiful boy and your family.
Thank you so much Erin!! 🤍🤍🤍
Praying for your family. Stay strong for your family. Thanks for speaking about your child's condition. God bless.
Thank you for your prayers & learning about Denver & our family 🥰🤍
Wishing the very BEST of success to Denvers surjury
and To this beloved
family..👍❤️🥰👏‼️
Thank you so much! 😊🤍
My aunt had Marfan's and lived until 70s. She had 7 heart n aorta surgeries. She was also a fighter. Be prepared for a long life with him. He's a blessing.
Oh wow ! 7??? What an absolute fighter! I pray every day for him to be with us until then 🤍🤍
So proud of how articulate your journey with Denver. ❤
Thank you, that a very kind comment 💖
Prayers for you and your beautiful young family. Denver is a precious child and you are the loving parents that he needs. Positive thoughts and lots of love to you all. Sending warm hugs to Denver and your other child.❤️🙏
Aww, what a cutie. Can’t imagine having to deal with a sick baby, wish you and your family the best!
It’s been a rollercoaster of emotions , it is so hard to explain 😔🤍 thank you for your well wishes for Denver and our family 🤍🤍🤍
i really can't help but smile at his photos, especially in glasses!! you have done a great job explaining in enough detail for people to understand the seriousness of what he, and your family are going through - but not so in depth that some viewers may not understand.
it's so important that you remember that to be the best help to him, you need to help yourself... and you're right on-top of that too!🌞🧿🌼🌿
Therapy has been so helpful , I’m so happy we have a therapist we love 🤍 & thank you I’m glad I did okay at explaining 🤍🥹 thanks for being so kind and lovely to us , it so heartwarming 🤍
I love the way you talk to little Denver!! ❤ He is most precious and he is God’s own. Love and hugs from Michigan! 🤗🥰
What a beautiful comment that made my day. Thank you!! 🤍🤍 hugs back 🤗🤗
Sweet little angel 💛 blessed to have you as his mama.
Thank you so much 😅🤍🤍
Denver is really adorable and you are so right, a happy little guy!
I can see how strong of a woman you are at your young age. I admire your strength.
You, Denver and your family are in my thoughts and prayers. ❤❤❤
Thank you very much for your kind words towards our family 🤍 thank you so much for your prayers 💕
you are really brave to post and THANK YOU for sharing your amazing son with us. EVERY child is a gift and supporting you is easy ..please know that we are rooting for you and you are an incredible mom!!
Children are such gifts and blessings 🤍 thank you for your support and kindness to Denver and our family 🤍
His laugh is so adorable 🥰 🙏🏾🙏🏾🙏🏾 for Denver and the whole family
Thank you very much 💖💖
You did so great on video, I will praying for you, your family and your precious little boy.. Please keep us posting.. You're a super great mommy.. He know he is love by all of you and he is blessed. ❤
Thank you so much for your kind comment 🥹🌼🤍
Your sweet boy is absolutely beautiful. Thank you so much for sharing him with us.❤
Thank you for your support towards our family & learning about Denver 🤍🤍
Thank you so much . My daughter is special needs and it is nice to watch other videos of wonderful parents and their special needs child
Thank you! That is what my goal was, not much on UA-cam compared to others. I hope you are doing well, thank you millions 🤍
Denver is precious! I’m praying for you all, for successful surgeries, for strength for you and your husband, thank you for sharing your story.
Thank you so much! Big answers about surgery this week & we are praying it does wonders for him 🤍💖
You're extremely brave, Isabella & a wonderful mother! Sharing your story must be very difficult, esp your emotions, but it will help So Many families, with special needs children, with Any type of conditions. God bless you & your beautiful family on this journey. Denver is such a beautiful & happy baby. ❤❤❤❤
Thank you for being vulnerable and sharing your story. Means a lot to me and my family
Thank you for your kindness! 🤍 do you have family members with Marfan syndrome or another connective tissue disorder ? 🤍
You are a great person and a strong person
Glad that you shared your sons story
I am so glad that you have the opportunity to have him .
I had a daughter who died during her birth she had a great deal of issues.
Her loss was hard .i lost some of me with her. I have 5 amazing kids and i also married another man who loves us all stay strong god bless you and your family
I’m so sorry for your loss, I can imagine it’s a feeling so indescribable 🤍🤍
So good of you to educate all of us, and sending prayers for your sweet little guy and your family
Thank you for taking the time to learn about Denver ❤ Means so much to us !
While I don't understand everything about your precious baby's condition, I have 1 daughter with Down's and another that had multiple open heart surgeries. It hasn't been an easy road but Thanks be to GOD we have managed! My youngest is now almost 40 and has 5 kiddos of her own! My oldest daughter sees great, no problems with her heart or lungs and she is now 49 and living in a group home that she loves! Denver will remain in my daily Prayers as well as you all! You did great making this video and bringing light to this not so well known diagnosis! 💜
This is so uplifting, you are a grandma now and have raised 2 beautiful children. I pray this is our story with Denver, his first surgery is this summer & I know it will give him such a great quality of life. Thank you so much for learning about Denver and your amazing comment 🤍🤍
@@isabellajoyy I actually have 3 boys (well, young men) and 2 girls, plus 2 more young men that "adopted" me! I now have 14 grands and 1 great grand on the way between them all! I've loved every tear and every joy! 💜 As the character "Dory" says, "just keep swimming!"
God chose you to be Denver’s mama and God does not make mistakes. No one is in your shoes and can judge anything you say or do or don’t say and don’t do. Bless you for showing your vulnerability. ❤
& Thank you for watching and learning about Denver & his struggles. he's so strong 🤎🤎
Thank you for sharing and helping us to learn about Denver's syndrome. Your precious baby boy is a treasure and obviously so loved. Thank you again ❤
Thank you for learning about him! 🤍🤍🤍
You’re doing very well , it must be so hard to deal with your baby’s pain. Stay strong.
Cardiology appointment days are the hardest on me . I can almost “pretend” nothing is going on until I found out about how his heart is doing & it hits me like a ton of bricks. Because I can’t physically see how bad it’s progressing it’s hard to understand how he’s actually doing 🤍 he’s so happy and sweet , we are hoping the surgery makes his day to day easier on him 🤍
I can't stop thinking of this little boy. He is very special❤❤❤
Thank you so much, so special & so sweet 🤍🤍
Oh my...your little guy has quite a few issues. 🙏 for all of you as you navigate the future addressing everything involved with giving him his best life on this earth.
Bella all your sadness and anxiety is so understandable. Especially in light of the challenging path you, your husband, adorable Draven and sweet Denver are experiencing. Take care. :-)
Thank you for being such a continues support to Denver! Your comments are always so kind and nice to him & our family ❤ I hope you have a lovely weekend !
What an amazing wee man ❤ a true fighter ❤
Bella, I am shocked none of his issues were picked up on his scans, such as his heart, pectus, club feet, long hands, large head etc. I would really question the person doing the ultrasound.
Hope he puts on weight to get his heart surgery quickly.
Love to you all, from New Zealand xxx❤
I was wondering as well how they couldn't see any of it!
Im so upset with myself i didn't include the picture at birth, but it was soooo apparent from day one. I will try to include it in another video. They have apologized to me that it was missed because when they looked back on the ultrasound it was apparent.. both from a physical standpoint ( hands, feet, limbs, head etc ) as well his heart and lungs since they are severely affected. I should have been referred to MFM so he could have been better monitored & been at the proper hospital. Watching my small town hospital struggle to give him what he needed was so scary..
Thank you so much! & Hopefully weight gain comes quick :) little guy just burns so many calories & they think the surgery will help with that! fingers crossed !!
They should have caught it :( they have since apologized as it was apparent when they looked back on his reports...
Hi- I have mentioned before that my granddaughter was born with multiple heart defects and other problems. She had a lot of trouble gaining weight on her tube feeding before her second heart surgery. Part of the problem was that her heart and lungs were working so hard. They switched formulas several times, but it was tricky,because like Denver she had terrible reflux and vomiting. Anyway, she did gain weight,and after that surgery things were easier because her heart and lungs didn’t have to work so hard any more. Let’s hope the same thing happens for Denver😊
@@cynthiabishop3836 thank you so much! I have heard that it gets easier on them after surgery & I think that will be the case for Denver like your granddaughter 🤍 fingers crossed 🤞🏻
Awww Dear One!! Im old enough to be your Momma & my Momma heart is SOO PROUD of You & Your husband!! You have chosen to TRUST to PROTECT to Bring GREAT JOY to your family for your PRECIOUS Boys!!! Both of your sons FEARFULLY & WONDERFULLY Made knit together in Your womb Psalm 139:13-14!! I was SMILING ear to ear watching Denver hold his "hushy" 💙!! Thank You for being "REAL" choosing to be vulnerable, I can't imagine any Momma not having anxiety, BLESS You for realizing you needed someone to help you on this journey!! LORD BLESS YOU & Keep YOU The LORD make HIS FACE Shine upon You, Your Husband, Draven sp? & Denver & the LORD be Gracious to You, the LORD turn HIS face toward You & give You PEACE Num 6:24-26...My Love, My Prayers for You!!! Your friend in the ❤ of MO, Mrs Tj 🙏💙💙...LOVE YOU PRECIOUS Denver!!!
This comment was so uplifting, thank you for being so incredibly kind and warm to Denver & our family! he is so smiley and happy i'm glad you loved it as much as me :) Thank you for these words and prayers, it is so incredibly welcomed!
@@isabellajoyy LORD BLESS YOU This Mother's Day Dear Precious One 💙💙🙏
@@Tj-TrustJESUS Happy Mothers Day to you!! 🤍🤍
Hugs and prayers for you and your family!
Thank you! 💖
Thank you for sharing your beautiful baby Denver with us. I will be praying for him and your dear family. You are a precious mother and Denver is a precious baby. 🙏🏻
Thank you so much for your prayers and kindness 🤍🤍🤍
@@isabellajoyy oh darling momma you are so very welcome. I know how very difficult it can be to have a child that needs extra help and support. Three of our children were born with Down syndrome. I am blessed to be able to lift you and your beautiful family up before The Lord. Until I saw your video I hadn’t heard of Neonatal Marfan Syndrome before. Our daughter is 42 years old and we have been involved in many special needs groups. I will be sure to pray for Denver daily. If it would be alright with you I will ask a few of my dear friends to pray for Denver and you too. I’m sending you a warm and gentle hug. ♥️🙏🏻
@@louettesommers8594 yes of course we would love that! Thankful so much for your thoughts & prayers for us. It helps to have such a loving supportive circle 🤍🤍🤍
Oh my god, what a precious baby boy, the way he looks at you, he absolutely adores and loves you, you are doing a phenomenal job mom!!!I’m a peds nurse and I can tell you that love is the BEST medicine, and you are giving it to him!!! I always felt so bad for the kids we were caring for who had no family, there is a huge difference in outcomes. I know you feel helpless and overwhelmed, but know that what you are doing IS making a huge, huge difference in both your sweet boys lives!!! Easier said than done I know, but make sure you are getting care for you too, glad you have a therapist (it’s been a must for me in this field!) Totally subscribed, rooting for your beautiful family!❤❤❤❤
When I was on unit 2 with Denver after he left the nicu, I noticed a baby there with no parents the whole time I was there, I used to cry wanting to go snuggle both babies. My hormones were whack . Maybe they came & I didn’t notice, but the nurses were alway over playing and spending any time they could over there and it was so sweet . You guys are amazing! Thank you millions 🤍🤍
Thank you for sharing your family's journey. You & your husband are so strong and it is beautiful to see how you are managing this new aspect in your life. Wishing a safe & GOD's hands control on lil Denver's surgeries. GOD bless you all.
Thank you so much 🤍 I pray to god everyday to watch over Denver & his future 🤍💕💕
You are simply amazing. Your love for Denver is giving you tremendous strength. Denver is blessed to have you.
Thank you so much!! ❤