At the age of 25 doctors discovered I was also missing my internal carotid artery, until that day I had led a perfectly normal and healthy life, I am due to turn 40 and have had no issues. Isabella will be fine 🧡 praying health blessings over her
Stay strong and stay positive guys. Blood flow will be absolutely normal, I was told by specialists in Spain that the body is so intelligent, it learns how to supply blood to the brain via alternate routes. As I mentioned in my previous comment, I’m also missing my internal right carotid and I lead and have a lead a completely normal , healthy life. ❤
My sister had serious health challenges so your story hits home for me. Your vulnerability on camera is unbelievable. The lesson I have from my own life journey that I can share is to appreciate the good moments deeply, work to stay positive, and keep a tender heart toward each other. Having watched you for years, I know you can face any challenge with practical loving positivity.
Your Baby girl is Beautiful active alert engages with you !Be the Loving parents and enjoy your little girl. Beautiful that your families have been with you in Malta❤. We have a differently abiled now an adult Daughter Patti🥰💓🙏🏻💕 She had a many challenges and we all are making progress-🥰🙋♀️ One day at a time, having a c section in another country , Thank Goodness you both have been practicing for years at life challenges.Congratulations 🎉 again on your beautiful baby girl!
Hey guys, Fellow sailors and viewers here. We want you to know that upon seeing this, my wife and I said a prayer for your daughter this morning. You guys are such special souls, and we wish you the very best of health and will continue to pray for little Isa for the months to come. We trust this will all work out just fine. You two are so strong
just love her. at the end, she will be has she should be and you will do what you can.. but don't forget to just love her, she's who she needs to be and you are all she needs
Every child is precious. We waited close to 9 months from the first "hey your child seems to have trouble" to a diagnose. He's 23 now and is still living with a disability but he is a wonderful young man, He has a job, he takes care of his own cooking and keeps his clothes clean. he gets himself where ever he needs or wants to go. He knows "everyone" and never forgets anyone's name. We had a lot of tears over the years but we have a young man we are proud of now. Every child has their difficulties no matter how _normal_ they are. It is a part of parenting, you'll do fine.
As a father of two wonderful 31 year old sons, and the grandfather of a 5 yr old, a 3 yr old and a 4 month old, I can tell you that worring about your kids begins the day they are born, and it NEVER ENDS! The best we can do is care for them the best we can, pray for the best possible outcomes, and pray that G-d gives us the grace to handle everything that life throws at us. From this video, it seems that you have lots of reasons to be optimistic. Hang in there. Your baby girl is adorable!
Watching Des cry, I just wanted to reach through the screen and give her a good hug. It's OK to cry and let out your emotions, but do try to realise that you are stronger than you think and you have the support of your family, all the medical professionals and the support of this community.
I would contact the Mayo Clinic, make an appointment and fly there for a definitive diagnosis and treatment. We went to several doctors for our daughter in Portland. I ended up calling mayo clinic and flew her there. Their entire staff and support people were fabulous. All the specialists worked together and ordered a battery of tests that were carefully timed and coordinated. She finally got a diagnosis and treatment started in 2 days. Impressive
God bless that little girl. I have been in your shoes and it sucks. Work together and support one another and you will get through this. My wife and I celebrate 30 years this year, without each other we would never have gotten through it.
A coworkers granddaughter has the same condition. Learn all you can. It took quite a long time to get diagnosed for there granddaughter, so the fact you got diagnosed this quickly is a plus. God bless.
As a new parent I remember asking my Mom when do you stop worrying about your kids. She said you never do; and she was right. My kids are older now and there hasn't been a day that I haven't worried about them. So even without the medical issues, it's normal to worry. Just don't wish your time away waiting for when things will be better. Everyday with your family is a gift. Be present and aware of what's you've got right now, and there will be less time to worry.
After 20 years of health care work and a daughter of my own I know with 100% certainly that no words will ease your concerns and set you at ease. What you have is each other and an unparalleled support system. It's ok to be afraid it's ok to cry and stress eating ramen is perfectly acceptable. You both have this challenge one day one hour one appointment at a time. We got you. 2 for 2 on projects this episode.... Dammm Jordan is on a roll. Hope you got an extra belt or two.
My granddaughter is 11. She also has PHACE. She was on an experimental medication for a few years that resulted (in all the kiddos who took it) developing a genius IQ. She still takes blood pressure meds but lives a very active and joy filled life. It hasn’t always been easy and there have been a few scares, but all in all, she’s remarkably healthy. Praying for your little one to do extremely well 🙏🏼
Our prayers are with you. Our granddaughter was born with a large angioma on her neck, and has signs of phaces. She was not diagnosed early as your baby has been. I think it's a blessing that your doctors were aware and have acted promptly to get the appropriate testing done. Our granddaughter has had a few issues including vision, and a brain tumor. She is also very big for her age which prompted the testing that revealed the tumor just before her second birthday. We have been blessed to have good doctors, and today she is 7 years old and a very healthy, happy, normal little girl with a very bright future.
I has surface veins on my face as a kid and over time it diminished - also when my mom was 80 she had heart surgery and they found out one whole side of her veins in her torso were not there - our bodies are remarkable things but the main thing Issa has going for her is you two kind and loving parents. I will send positive spirit toward her and you both.
So distressing as a new parent. My son was born with a major complication of venous malformation around his forehead.... veins growing from the brain through his skull and presenting on the outside of his forehead. At age 2... he had surgery this mass of stuff was removed. There was vessels affected inside the brain and we were given the same diagnosis that he would be fine but the doctors couldn't say what the long term held for him - He's now 30 years old, healthy, with Harry Potter scar on his head - never has had any issues as a result. Of course it's upsetting now, but quickly, normal life will carry on and this will be a thing of the past. Wishing you all a beautiful life! And what a beautiful baby girl you have!
A little over 50 years ago, one of my dear friends had a daughter with PHASE. She has the, almost, exact same birth mark on her face (untreated, so still there), heart issues, and her kidneys were affected. Overall, through all of the medical issues, she grew up to be a healthy woman who has two healthy sons of her own. Just thought you'd like to know that. Love to you and your adorbs baby girl.
My daughter was also born with a hemangioma on her face and also took propranolol, we also went through laser treatments while she was about 3-4 months old. Today she has almost no signs and has never noticed it herself (she is 7 now) nor has her school friends. We went through many days of feeling sorry for ourselves and I know the feeling of trying to be strong while being scared and feeling sorry for yourself. If you want any more information on our experience feel free to DM me.
Our heart goes out to you three. With a tear in our eyes we cannot tell you how much we feel for you having complications with your baby. Willa has had her share of anaphylaxis to diary yet cannot imagine what you must be going thru. Sending you SO MUCH Love and Support!!!!
Hey guys! Thank you so much for your sweet message. It really means so much to us! I saw one of your videos about willa's reaction to dairy- i can't even imagine how terrifying that must be for you guys every time she has a reaction! The fact that you guys can handle it gives us hope! Thanks again for your words of encouragement!
As a parent of three Special Needs children (Two with Autism and one with Spina Bifida) I can very much relate to the stress and emotional rollercoaster you guys are going through. For me, especially when dealing with the initial discovery of each child's issue, what has gotten me through each one is to focus on my duty as a parent and in loving my children and wife. That focus has really helped me through the hard times and the struggles with my kids. Loving them as much as possible as well, of course. But above all, to aquit myself well as a Parent. Always being successful didn't matter. What mattered is that I was doing what I should be doing. Keep the focus, stick together (no blame laying, because it isn't anyone's fault. No, not even your own.) Just focus on loving your baby, loving each other, and doing your duty as parents. God Bless you both, and may you have many happy years together as a family.
My heart goes out to you man. I read this and suddenly your profile name makes so much sense. I know you feel exhausted and spent. May god give you the strength to live up to your parental duties in these extraordinary circumstances. Not sure if you believe in God or not, but I hope he is watching over you. I wish I could do more for you.
The problems we encountered were well wishers with an extremely nervous wild energy that was of course absorbed by our newborn. Don’t ever for one second worry about hurting your friends’ feelings. Be tough and protective of your newborn. Only you and Jordan really understand your newborn. Good job Jordan for manning up. We are all pleasantly and lovingly in awe.
P.S. Bf’ing is a choice and allowing precious pets near your infant to gently wag her tail is also your choice and no one else’s. Tiny animals can be huge stress reducers.
I work for a genetic testing lab. I'm in awe everyday hearing parents explain the journeys they are going through with their childrens developemental issues. Isa is so lucky to have the support and love of such positive parents. She's gorgeous, and I hope nothing but the best for her moving forward.
12:15 this cracked me up… I think about 99% of us have been at the point were we will “just start plugging wires into wires” on a project because we’re stumped. And then to end up having it work is AWESOME! . Congrats on another successful project.
My wife and I can relate to your fears and anxiety. Our twin girls were born three months early, weighing 1lb8oz each and had a variety of issues as a result. The girls spent the first three months of their lives in the NICU in another state while my wife lived near the hospital at a Ronald McDonald's House while I was home alone going to work to support us all. I stressed each and every day, missing my wife, worried about my girls and hoping for the best. Two weeks ago those twin girls celebrated their 15th birthday and they are doing great! Stay positive Buds, love and prayers from Wyoming, USA.
Yep, know it well. 23 week Twin boys, one came home in a few weeks while the other needed many procedures. Mine were 4.7 and 4.3. I cant even imagine babies at less then 2 pounds. One of my boys is a power lifter and pushing 200 lbs! He's a beast!! Blessings from NY. (P.S. Love Wyoming, fell down Corbet's cooler in Jackson-hole! Not pretty....)
There is a special place in God's heart for people who have babies with special needs. What ever the outcome she is better off with people like you two who have the character and loving hearts to take the best care of her she will ever get. Lot's of us are out here praying for her and you bath. You are doing great and believe in your selves, we believe in you.
“The art of living is more like wrestling than dancing, because an artful life requires being prepared to meet and withstand sudden and unexpected attacks” Marcus Aurelius. The two of you are proven…This child is in capable and loving hands. God Bless 🙏
My wife and I have experienced similar issues, and worse, with our children. As hard as it seems at the moment, it will get better no matter what course your daughter’s issues take. It seems like she’s on a good road, however. Take heart in that, and know all three of you will get through this and live your best lives together and be happy. Good luck and prayers to you three.
Our son was born with a life threatening genetic disorder. We were told that he probably would not live beyond 3 years of age. It was heartbreaking. We totally understand the pain you feel. We came to know that all we could do was love him, and do our best to give him what he needed. My friend, you fight these battles on your knees. Under estimating the power of prayer is a mistake. We also will pray for your family and especially little Issa. By the way, my son will turn 40 in a few days. He married a nice girl last year. You just cannot know the future.
As a parent of a disabled child (cerebral palsy), our first and now an adult, I would never change what occurred due to the growth I received as a person from raising a child with disabilities. The stress of not knowing is the toughest times, but with therapy and medical assistance, our son now has a fulfilling independent life, has his own daughter and is functioning just was well as anyone, except for pain and issues that must be indured due to the circumstances. My thoughts and prayers are with the three of you.
I had my heart crunched until you've got the results saying that Isabela's brain and heart are OK. She will be just fine and healthy, and some day into the future you will hold her children in your arms.
Know that Issa is 101% perfect. Everyone has Something. We’ve all had these Somethings for generations - it’s just that today our medical system is able to test the crap out of us, so they find & diagnose our Somethings. The result today is we can get more stressed as a result. Years ago we would never know that our xyz was missing or different. Our Somethings help make us exactly who we are. Sometimes they give us challenges to overcome. Those challenges are really Opportunities to grow. Issa’s in good hand with you; and you’re in good hands with her. You’re all gonna hit the challenges, take the opportunities, and grow together. Enjoy the journey 😎
I remember all of the emotions when our son who was born premi and with cerebral palsy (several dead spots throughout the brain).. All of the unknowns were very scary. It's okay to be worried and emotional. Being a new parent is definitely hard enough. Really feel for you guys and think of you often.
This was a very intense video to watch concerning the health of your baby but by the end I felt a wave a relief as her test results were revealed. She's the cutest little sailor I've ever seen.
Just take each day with joy for life at a time. Because it is literally all you ever have. We just buried our 35 year beautiful who beat osteogenic sarcoma at the age of 12. He lost his left leg out of the deal, and it was the worst day of my life telling the doctors to cut it off, but it turned Andrew into a person who took every day of life to the max. He went on to become a physics and math major engineer and awesomely loved kind person. I think God every day for the 25 extra years that we got to enjoy him before he passed suddenly in his sleep.
The amount of strength you’re both showing in this video is a testament to the amazing parents you are. Wishing that little one the best, despite the bump in the road. Sending your family love and strength.
If they look hard enough, we all have something wrong with us. I have three girls, and they are all but grown now. Each one of them had something the doctors found along the way. They are fine now, and I am sure they will be for the rest of my days. You guys stay strong, and just love her. Love heals all wounds.
One day that beautiful little girl will come to know just how blessed she is to have such wonderful and loving parents as yourselves. God bless all of you!
No one is perfect. Everyone is unique. All of us are "broken" in some way - different from others. More important, each of us are different interpretations of what it is to be human. Your daughter is different, but her differences will become just a backstory about who she is. She will grow to become whoever she will be. All you can do is help her find her way. Keep up your search for the best ways to help her, but I would suggest that both of you take a breath, smile for a moment, and give thanks that such a beautiful new life has come into your world. She will be her own person some day (all too soon) and find her own world to live in. Celebrate every day (even the tear filled ones) because there is no undoing what is. Go forward with joy. May the three of you (four!) find fair winds and following seas after each storm in your life.
Humans are amazing biological creatures! We can adapt to just about anything. I witnessed a guy break the wheelchair racing speed record at the NYC marathon with no legs! His upper body and arms where so incredible developed. Again adapt and overcome.....
Life IS like an ocean crossing, well said. And Isa is all ready to be a little sailor with the best boat crew she could ever want. Thinking of you here in Holland and sending lots of love.
Hi guys, my heart goes out for you. It’s hard enough having a new born. Without all these hiccups I pray in the mighty name of Jesus. That she will be okay , thanks for keeping us updated with your journey with the new born baby girl. She is so beautiful just remember God don’t make mistakes , Ps Clifton Logan City Queensland Australia 🇦🇺 from the big island 🏝️
1st baby, 20th baby, they are all different. Your situation is different and the way your child develops and grows will be different, and that all sounds scary ... but it is also normal, and the way you are reacting to it is normal (turns out the female body uses that hormone overload for good ... for better or worse). The good news is that if you put one foot in front of the other on a daily basis you will all survive and prosper in the end. One of my favorite mantras is that 'nothing worth doing is ever easy', and being a parent is VERY VERY hard. You guys have proven to yourselves and the world that you are very good at being stubborn until you persevere though, and that is what everything worth doing takes. You've got this, it just not going to be easy -- but VERY worth it!!!
Hey guys. I just wanna tell you something. Never over or underestimate health problems. I raised 4 kids, and babies like a new live human have stronger live and surviving habits what you or other imagine. My 2nd son born in very raff condition with lot of problems and he is now 22 and live full life only left with some crohn's disease. My youngest son now 9 hi is born with patch on his skin and O legs etc. Now he is do taekwondo no O legs anymore and a patch not affect for anything. Kids are strong. Just give them love and good all sours of food and their body will make the rest. Wish you the best ❤❤❤❤
Isabella , is the perfect name , she is a beautiful little girl, and she has the perfect parents too love and nurture her, don’t worry about the little idiosyncrasies she has , as long as she has you she will be fine, all our hearts are with you , in a short time we will see the three of you enjoying the trials and tribulations of life and sailing, everyone is with you in mind and body , and we all love you ❤
All the best to you and your family. Beautiful little one. My son was born with a Hemangioma on his face. It was gone by the time he turned 3 years old. My heart goes out to you Deseray. She is so lucky to have both of you and your families.
My son was born with a much darker hemangioma on his arm above his antecubical area. Within2 years it had completely faded and gone. Bless all of you💜 She’s a beautiful little girl💜💜
No matter what health challenges your daughter may or may not have, she will have a great life, as she has two amazing parents to support and guide her. You guys got this.
One more thing… (thought)… the body’s ability to adapt and fix itself is absolutely unbelievable. I think over time you’re going to be surprised at some of the things that happen…(on the positive side). Again, God bless you guys.
38 years ago our son was born with transportation of the great arteries. He needed open heart surgery when he was 3 days old. Today he is 6 foot 5 and he has 4 children. Wishing you both the best on this journey.
I was born 2 months early in the days when that wasn’t supposed to be survivable. I had a pretty tough childhood with very serious asthma and spent a good part of it in hospital. But here I am with children of my own and what got me though was the love of two great Parents. It’s very clear that you are also going to be great parents for Issa and I know that you have the strength to get through this and Issa will have a great Childhood she’s gonna be one heck of a sailor. I know it’s tough but you got this.
You will find, as it seems you are already, that our little kiddos are incredibly resilient. And, with you as wonderful parents her odds are even that much greater.
I am very sorry to hear of the struggles you have been experiencing and what you are going to be going through. My daughter was born with multiple birth defects (Golden Har Syndrome plus extra anomalies). She was in the nicu for her first 6 weeks. She had her first surgery when she was two days old. Within those 6 weeks she had two more surgeries. When she was 6 months she reentered the hospital and was put on a ventilator for 11 weeks, and then had two Aortopexy's and when she was 10 months old the doctors found she a diaphragmatic hernia. During this time we learned she was the longest surviving child in the world. She is now 37. It is a long road so make time for yourselves, continue talking to each other because your baby needs you both. Stay positive. Love the channel
One thing Ive learned is that all kids have some issue. Some more pronounced and serious than others but ALL kids have something and worrying is unfortunately a big part of parenthood. At the end of the day that baby is beautiful and you guys are awesome parents and doing everything within your power to care for her. She's lucky to have you!
Retired Fam doc with three kids and 7 grands. Totally agree. Always something to worry about. No such thing as normal. We all have something. Have Faith.
Really just want to reach out and hug you both. I will pray for you both and the little one!!! My heart just hearts knowing how much you both have waited for this little angel and the stress is unimaginable. Keep making videos and hang in there. Remember your never alone and if overwhelmed you have an army to support you!!
Your love for the little child in your care will make you strong and I know we your public are feeling huge empathy for all three of you. As a father of 8 and also being a very old wooden boat builder I can see what very strong characters and sailors you both are. Only the strong are tested. God bess you all.
Dude !!!! Thank you for sharing such sensitive details of your life , I remember when my son was diagnosed with diabetes… such a vulnerable feeling , 17 years later and he’s squatting over 350 lbs
We are praying for you all and especially Isabella.....She is beautiful. Your family is amazing. You are an amazing Father and Husband......a real man who loves his family above all.
Hi Jordan and Desiree. Isa is adorable and she is very lucky to have exceptional parents like you. You mentioned in the first part of your video that Isa might be missing a carotid artery. I don't know if the doctors there have done this test, but I recommend you ask them if they can do a Carotid Duplex scan - it is a simple ultrasound of the neck vessels that show the flow of blood and can verify if her right carotid artery is indeed missing
I really hope that Isabella will live a happy life with good health. My prayer is that her body will develop in a positive and normal way, without any negative effect.
Hello there you two and sweet little Isabella. Repairs repairs and drama are a fact of life and especially on a sailboat. You are inquisitive, informative, courageous and compassionate. It's nice when you can get together with your folks. My prayers go out to you and darling little Isabella. I'm sure she will grow up to be a super lady and yes get Osa a bath. I think I smelled her too. Well oh, good shares to you all and thanks so much for sharing a bit of your life with us, by now.
Good Lord. I'm praying your family! Never forget that there's no daylight without darkness. Many sorrows turns out to be a blessing in the end of the day. She's unique and special and made by God exactly like she was supposed to.
She is and will be, not only the delight of your life, but your most treasured asset. One day at a time, one worry at a time, enjoy every cuddle and smile, you have got this!
A prayer for Issa, family and all involved. A full life of health well being and happiness. For strength and understanding as you go along together. Blessing from God who is with us always knowing all things with his abundant love ready for the asking in his support and help.
I am at a loss for words after watching but Issa is precious bundle of joy and you are great parents I have a feeling she will be running that boat in a few years. 😊
You two inspired us a couple years ago to start documenting our own adventures and empty nesting experience as we have watched your entire journey. What we loved about your story is the raw honesty you share. It's a reminder that there is beauty even in hardship. Spending your life with your best friend, and sharing that with family and friends is a true blessing. This video sends that message so well . Thanks for giving so many people encouragement and inspiration through your honesty. Being in the other side of raising our kids, there will be many highs and lows to come, but you are doing all the right things to navigate through them together successfully. Our thanks and prayers are with you.
My gosh you guys. I am just heart broken over this. The one thing I will say is just keep your strength and health together and never give up. I will continue the prayers and my God bless this beautiful baby girl with nothing more then great health and for her to grow with loving parents.
A big virtual hug from us both. That little girl has the very best parents to get her through her adversities. Never easy even in normal living but on a sailboat that is substantially exposed on YT, doubly difficult. Where Britons would say they’re crossing their fingers for Issa, we, from Southern Africa would say we’re holding thumbs. ❤❤❤
Hello friends! You guys are amazing parents and I give you lots of credit for figuring all this out while living abroad on a sailboat! Thanks for sharing your experience, it will come in handy to others like myself who want to sail and start a family. I'll keep praying for you all and Issa. Keep enjoying your time in Malta! Fair winds friends! ⛵☀️
My daughter was born with a cataract and is legally blind in her left eye. She was a regular at the Bascom Palmer Eye Institute, Duke University, Asheville Eye, and the Eye Institute in Singapore. The doctor said the only thing she will never be is a pilot. She patched her good eye for many years to keep the interaction going with the brain. She’s 20 years old and thriving in college!
There is so much I want to share with you both, but when it's your first child, it doesn't matter what anyone tells you. Just love each other and there will be nothing you can't get through as a family. i promise.
She is a lucky girl to have two such loving, caring and parents who will find answers and be prepared for what may happen but love every moment as it unfolds. All four of you are in our thoughts and prayers.
hey "kids" please dont be so sad , she will grow to be a courageous adventurous lovely lady just like mom and dad, my prayers are with you always for your safety and good health to enjoy that precious pearl your have enjoy !!!!! nonna
At the age of 25 doctors discovered I was also missing my internal carotid artery, until that day I had led a perfectly normal and healthy life, I am due to turn 40 and have had no issues. Isabella will be fine 🧡 praying health blessings over her
Stay strong and stay positive guys. Blood flow will be absolutely normal, I was told by specialists in Spain that the body is so intelligent, it learns how to supply blood to the brain via alternate routes. As I mentioned in my previous comment, I’m also missing my internal right carotid and I lead and have a lead a completely normal , healthy life. ❤
My sister had serious health challenges so your story hits home for me. Your vulnerability on camera is unbelievable. The lesson I have from my own life journey that I can share is to appreciate the good moments deeply, work to stay positive, and keep a tender heart toward each other. Having watched you for years, I know you can face any challenge with practical loving positivity.
Issa is perfect and adorable. And she has two buds to look after her, hang in there guys.
The best thing going for Issa is having you two for parents. She is a fortunate little girl.
Our thoughts and prayers are with you guys. Isa is perfectly and beautifully formed ❤❤
Thank you!
Your Baby girl is Beautiful active alert engages with you !Be the Loving parents and enjoy your little girl.
Beautiful that your families have been with you in Malta❤.
We have a differently abiled now an adult Daughter Patti🥰💓🙏🏻💕
She had a many challenges and we all are making progress-🥰🙋♀️
One day at a time, having a c section in another country , Thank Goodness you both have been practicing for years at life challenges.Congratulations 🎉 again on your beautiful baby girl!
🫶☮️💟✝️🫶 All of her virtual aunties are sending you strength, hugs, positive energy and wrapping you all in a blanket of love.
Hey guys,
Fellow sailors and viewers here. We want you to know that upon seeing this, my wife and I said a prayer for your daughter this morning. You guys are such special souls, and we wish you the very best of health and will continue to pray for little Isa for the months to come.
We trust this will all work out just fine.
You two are so strong
Please know Alot of people are praying for the three of you!🙏🙏🙏
just love her. at the end, she will be has she should be and you will do what you can.. but don't forget to just love her, she's who she needs to be and you are all she needs
Every child is precious. We waited close to 9 months from the first "hey your child seems to have trouble" to a diagnose. He's 23 now and is still living with a disability but he is a wonderful young man, He has a job, he takes care of his own cooking and keeps his clothes clean. he gets himself where ever he needs or wants to go. He knows "everyone" and never forgets anyone's name. We had a lot of tears over the years but we have a young man we are proud of now. Every child has their difficulties no matter how _normal_ they are. It is a part of parenting, you'll do fine.
As a father of two wonderful 31 year old sons, and the grandfather of a 5 yr old, a 3 yr old and a 4 month old, I can tell you that worring about your kids begins the day they are born, and it NEVER ENDS! The best we can do is care for them the best we can, pray for the best possible outcomes, and pray that G-d gives us the grace to handle everything that life throws at us. From this video, it seems that you have lots of reasons to be optimistic. Hang in there. Your baby girl is adorable!
Watching Des cry, I just wanted to reach through the screen and give her a good hug.
It's OK to cry and let out your emotions, but do try to realise that you are stronger than you think and you have the support of your family, all the medical professionals and the support of this community.
I have a good feeling Issa is going to be just fine she has 2 loving parents caring for her that have huge hearts thoughts and prayers for you all.
i have that feeling too
Same here!
I think so as well. With you as parents, growing up on a sailboat, she has the right start.
I think so too. The echo of her heart being normal speaks volumes! Prayers for all of you!
I would contact the Mayo Clinic, make an appointment and fly there for a definitive diagnosis and treatment. We went to several doctors for our daughter in Portland. I ended up calling mayo clinic and flew her there. Their entire staff and support people were fabulous. All the specialists worked together and ordered a battery of tests that were carefully timed and coordinated. She finally got a diagnosis and treatment started in 2 days. Impressive
God bless that little girl. I have been in your shoes and it sucks. Work together and support one another and you will get through this. My wife and I celebrate 30 years this year, without each other we would never have gotten through it.
A coworkers granddaughter has the same condition. Learn all you can. It took quite a long time to get diagnosed for there granddaughter, so the fact you got diagnosed this quickly is a plus. God bless.
As a new parent I remember asking my Mom when do you stop worrying about your kids. She said you never do; and she was right. My kids are older now and there hasn't been a day that I haven't worried about them. So even without the medical issues, it's normal to worry. Just don't wish your time away waiting for when things will be better. Everyday with your family is a gift. Be present and aware of what's you've got right now, and there will be less time to worry.
After 20 years of health care work and a daughter of my own I know with 100% certainly that no words will ease your concerns and set you at ease. What you have is each other and an unparalleled support system. It's ok to be afraid it's ok to cry and stress eating ramen is perfectly acceptable. You both have this challenge one day one hour one appointment at a time. We got you.
2 for 2 on projects this episode.... Dammm Jordan is on a roll. Hope you got an extra belt or two.
My granddaughter is 11. She also has PHACE. She was on an experimental medication for a few years that resulted (in all the kiddos who took it) developing a genius IQ. She still takes blood pressure meds but lives a very active and joy filled life. It hasn’t always been easy and there have been a few scares, but all in all, she’s remarkably healthy. Praying for your little one to do extremely well 🙏🏼
Our prayers are with you. Our granddaughter was born with a large angioma on her neck, and has signs of phaces. She was not diagnosed early as your baby has been. I think it's a blessing that your doctors were aware and have acted promptly to get the appropriate testing done. Our granddaughter has had a few issues including vision, and a brain tumor. She is also very big for her age which prompted the testing that revealed the tumor just before her second birthday. We have been blessed to have good doctors, and today she is 7 years old and a very healthy, happy, normal little girl with a very bright future.
Wonderful to hear she's happy and healthy!
❤
I has surface veins on my face as a kid and over time it diminished - also when my mom was 80 she had heart surgery and they found out one whole side of her veins in her torso were not there - our bodies are remarkable things but the main thing Issa has going for her is you two kind and loving parents. I will send positive spirit toward her and you both.
So distressing as a new parent. My son was born with a major complication of venous malformation around his forehead.... veins growing from the brain through his skull and presenting on the outside of his forehead. At age 2... he had surgery this mass of stuff was removed. There was vessels affected inside the brain and we were given the same diagnosis that he would be fine but the doctors couldn't say what the long term held for him - He's now 30 years old, healthy, with Harry Potter scar on his head - never has had any issues as a result. Of course it's upsetting now, but quickly, normal life will carry on and this will be a thing of the past. Wishing you all a beautiful life! And what a beautiful baby girl you have!
A little over 50 years ago, one of my dear friends had a daughter with PHASE. She has the, almost, exact same birth mark on her face (untreated, so still there), heart issues, and her kidneys were affected. Overall, through all of the medical issues, she grew up to be a healthy woman who has two healthy sons of her own. Just thought you'd like to know that. Love to you and your adorbs baby girl.
My daughter was also born with a hemangioma on her face and also took propranolol, we also went through laser treatments while she was about 3-4 months old. Today she has almost no signs and has never noticed it herself (she is 7 now) nor has her school friends. We went through many days of feeling sorry for ourselves and I know the feeling of trying to be strong while being scared and feeling sorry for yourself. If you want any more information on our experience feel free to DM me.
Life has challenges that you can never really prepare for, but with a positive attitude and some teamwork you will make it and so will Issa!❤
My first grandson died and they brought him back , he was three months premature, now he is bigger than me and doing well for himself
Our heart goes out to you three. With a tear in our eyes we cannot tell you how much we feel for you having complications with your baby. Willa has had her share of anaphylaxis to diary yet cannot imagine what you must be going thru. Sending you SO MUCH Love and Support!!!!
Hey guys! Thank you so much for your sweet message. It really means so much to us! I saw one of your videos about willa's reaction to dairy- i can't even imagine how terrifying that must be for you guys every time she has a reaction! The fact that you guys can handle it gives us hope! Thanks again for your words of encouragement!
As a parent of three Special Needs children (Two with Autism and one with Spina Bifida) I can very much relate to the stress and emotional rollercoaster you guys are going through.
For me, especially when dealing with the initial discovery of each child's issue, what has gotten me through each one is to focus on my duty as a parent and in loving my children and wife.
That focus has really helped me through the hard times and the struggles with my kids. Loving them as much as possible as well, of course. But above all, to aquit myself well as a Parent. Always being successful didn't matter. What mattered is that I was doing what I should be doing.
Keep the focus, stick together (no blame laying, because it isn't anyone's fault. No, not even your own.) Just focus on loving your baby, loving each other, and doing your duty as parents.
God Bless you both, and may you have many happy years together as a family.
My heart goes out to you man. I read this and suddenly your profile name makes so much sense. I know you feel exhausted and spent. May god give you the strength to live up to your parental duties in these extraordinary circumstances. Not sure if you believe in God or not, but I hope he is watching over you. I wish I could do more for you.
The problems we encountered were well wishers with an extremely nervous wild energy that was of course absorbed by our newborn. Don’t ever for one second worry about hurting your friends’ feelings. Be tough and protective of your newborn. Only you and Jordan really understand your newborn. Good job Jordan for manning up. We are all pleasantly and lovingly in awe.
P.S. Bf’ing is a choice and allowing precious pets near your infant to gently wag her tail is also your choice and no one else’s. Tiny animals can be huge stress reducers.
I work for a genetic testing lab. I'm in awe everyday hearing parents explain the journeys they are going through with their childrens developemental issues. Isa is so lucky to have the support and love of such positive parents. She's gorgeous, and I hope nothing but the best for her moving forward.
12:15 this cracked me up… I think about 99% of us have been at the point were we will “just start plugging wires into wires” on a project because we’re stumped. And then to end up having it work is AWESOME! . Congrats on another successful project.
My wife and I can relate to your fears and anxiety. Our twin girls were born three months early, weighing 1lb8oz each and had a variety of issues as a result. The girls spent the first three months of their lives in the NICU in another state while my wife lived near the hospital at a Ronald McDonald's House while I was home alone going to work to support us all. I stressed each and every day, missing my wife, worried about my girls and hoping for the best. Two weeks ago those twin girls celebrated their 15th birthday and they are doing great! Stay positive Buds, love and prayers from Wyoming, USA.
Yep, know it well. 23 week Twin boys, one came home in a few weeks while the other needed many procedures. Mine were 4.7 and 4.3. I cant even imagine babies at less then 2 pounds. One of my boys is a power lifter and pushing 200 lbs! He's a beast!! Blessings from NY. (P.S. Love Wyoming, fell down Corbet's cooler in Jackson-hole! Not pretty....)
There is a special place in God's heart for people who have babies with special needs. What ever the outcome she is better off with people like you two who have the character and loving hearts to take the best care of her she will ever get. Lot's of us are out here praying for her and you bath. You are doing great and believe in your selves, we believe in you.
“The art of living is more like wrestling than dancing, because an artful life requires being prepared to meet and withstand sudden and unexpected attacks” Marcus Aurelius. The two of you are proven…This child is in capable and loving hands. God Bless 🙏
My wife and I have experienced similar issues, and worse, with our children. As hard as it seems at the moment, it will get better no matter what course your daughter’s issues take. It seems like she’s on a good road, however. Take heart in that, and know all three of you will get through this and live your best lives together and be happy. Good luck and prayers to you three.
Our son was born with a life threatening genetic disorder. We were told that he probably would not live beyond 3 years of age. It was heartbreaking. We totally understand the pain you feel. We came to know that all we could do was love him, and do our best to give him what he needed. My friend, you fight these battles on your knees. Under estimating the power of prayer is a mistake. We also will pray for your family and especially little Issa. By the way, my son will turn 40 in a few days. He married a nice girl last year. You just cannot know the future.
As a parent of a disabled child (cerebral palsy), our first and now an adult, I would never change what occurred due to the growth I received as a person from raising a child with disabilities. The stress of not knowing is the toughest times, but with therapy and medical assistance, our son now has a fulfilling independent life, has his own daughter and is functioning just was well as anyone, except for pain and issues that must be indured due to the circumstances. My thoughts and prayers are with the three of you.
Prayers 🙏🙏🙏. She could not have been born with any better parents. She is perfect in every way
I had my heart crunched until you've got the results saying that Isabela's brain and heart are OK. She will be just fine and healthy, and some day into the future you will hold her children in your arms.
Know that Issa is 101% perfect. Everyone has Something. We’ve all had these Somethings for generations - it’s just that today our medical system is able to test the crap out of us, so they find & diagnose our Somethings. The result today is we can get more stressed as a result. Years ago we would never know that our xyz was missing or different. Our Somethings help make us exactly who we are. Sometimes they give us challenges to overcome. Those challenges are really Opportunities to grow. Issa’s in good hand with you; and you’re in good hands with her. You’re all gonna hit the challenges, take the opportunities, and grow together. Enjoy the journey 😎
I remember all of the emotions when our son who was born premi and with cerebral palsy (several dead spots throughout the brain).. All of the unknowns were very scary. It's okay to be worried and emotional. Being a new parent is definitely hard enough. Really feel for you guys and think of you often.
This was a very intense video to watch concerning the health of your baby but by the end I felt a wave a relief as her test results were revealed. She's the cutest little sailor I've ever seen.
Just take each day with joy for life at a time. Because it is literally all you ever have. We just buried our 35 year beautiful who beat osteogenic sarcoma at the age of 12. He lost his left leg out of the deal, and it was the worst day of my life telling the doctors to cut it off, but it turned Andrew into a person who took every day of life to the max. He went on to become a physics and math major engineer and awesomely loved kind person. I think God every day for the 25 extra years that we got to enjoy him before he passed suddenly in his sleep.
The amount of strength you’re both showing in this video is a testament to the amazing parents you are. Wishing that little one the best, despite the bump in the road. Sending your family love and strength.
I was strong until I saw Desiree cry. I'll be praying for you all. I love you guys.
Grandparents are having fun as long as she is there lol joy of being a grandparent
If they look hard enough, we all have something wrong with us. I have three girls, and they are all but grown now. Each one of them had something the doctors found along the way. They are fine now, and I am sure they will be for the rest of my days. You guys stay strong, and just love her. Love heals all wounds.
One day that beautiful little girl will come to know just how blessed she is to have such wonderful and loving parents as yourselves. God bless all of you!
No one is perfect. Everyone is unique. All of us are "broken" in some way - different from others. More important, each of us are different interpretations of what it is to be human. Your daughter is different, but her differences will become just a backstory about who she is. She will grow to become whoever she will be. All you can do is help her find her way. Keep up your search for the best ways to help her, but I would suggest that both of you take a breath, smile for a moment, and give thanks that such a beautiful new life has come into your world. She will be her own person some day (all too soon) and find her own world to live in. Celebrate every day (even the tear filled ones) because there is no undoing what is. Go forward with joy. May the three of you (four!) find fair winds and following seas after each storm in your life.
Humans are amazing biological creatures! We can adapt to just about anything. I witnessed a guy break the wheelchair racing speed record at the NYC marathon with no legs! His upper body and arms where so incredible developed. Again adapt and overcome.....
We are praying for all of you! Strong parents make strong babies!
Keeping your family in my thoughts and prayers. Life is like an ocean crossing. You guys will get through these tough times.
Life IS like an ocean crossing, well said. And Isa is all ready to be a little sailor with the best boat crew she could ever want. Thinking of you here in Holland and sending lots of love.
Hi guys, my heart goes out for you. It’s hard enough having a new born. Without all these hiccups I pray in the mighty name of Jesus. That she will be okay , thanks for keeping us updated with your journey with the new born baby girl. She is so beautiful just remember God don’t make mistakes , Ps Clifton Logan City Queensland Australia 🇦🇺 from the big island 🏝️
1st baby, 20th baby, they are all different. Your situation is different and the way your child develops and grows will be different, and that all sounds scary ... but it is also normal, and the way you are reacting to it is normal (turns out the female body uses that hormone overload for good ... for better or worse). The good news is that if you put one foot in front of the other on a daily basis you will all survive and prosper in the end.
One of my favorite mantras is that 'nothing worth doing is ever easy', and being a parent is VERY VERY hard. You guys have proven to yourselves and the world that you are very good at being stubborn until you persevere though, and that is what everything worth doing takes. You've got this, it just not going to be easy -- but VERY worth it!!!
Hey guys. I just wanna tell you something. Never over or underestimate health problems. I raised 4 kids, and babies like a new live human have stronger live and surviving habits what you or other imagine. My 2nd son born in very raff condition with lot of problems and he is now 22 and live full life only left with some crohn's disease. My youngest son now 9 hi is born with patch on his skin and O legs etc. Now he is do taekwondo no O legs anymore and a patch not affect for anything. Kids are strong. Just give them love and good all sours of food and their body will make the rest. Wish you the best ❤❤❤❤
Isabella , is the perfect name , she is a beautiful little girl, and she has the perfect parents too love and nurture her, don’t worry about the little idiosyncrasies she has , as long as she has you she will be fine, all our hearts are with you , in a short time we will see the three of you enjoying the trials and tribulations of life and sailing, everyone is with you in mind and body , and we all love you ❤
All the best to you and your family. Beautiful little one. My son was born with a Hemangioma on his face. It was gone by the time he turned 3 years old. My heart goes out to you Deseray. She is so lucky to have both of you and your families.
Know that Issa, Jordan and Deserie are in my prayers. God gave you a beautiful daughter he will take care of all of you.
My son was born with a much darker hemangioma on his arm above his antecubical area. Within2 years it had completely faded and gone. Bless all of you💜 She’s a beautiful little girl💜💜
No matter what health challenges your daughter may or may not have, she will have a great life, as she has two amazing parents to support and guide her. You guys got this.
Bunches and bunches of love to all of you❤❤❤❤❤❤
One more thing… (thought)… the body’s ability to adapt and fix itself is absolutely unbelievable. I think over time you’re going to be surprised at some of the things that happen…(on the positive side). Again, God bless you guys.
38 years ago our son was born with transportation of the great arteries. He needed open heart surgery when he was 3 days old. Today he is 6 foot 5 and he has 4 children. Wishing you both the best on this journey.
I can't even imagine how that must have been for you as a parent! Glad to hear he's healthy and strong!
I was born 2 months early in the days when that wasn’t supposed to be survivable. I had a pretty tough childhood with very serious asthma and spent a good part of it in hospital. But here I am with children of my own and what got me though was the love of two great Parents. It’s very clear that you are also going to be great parents for Issa and I know that you have the strength to get through this and Issa will have a great Childhood she’s gonna be one heck of a sailor. I know it’s tough but you got this.
You will find, as it seems you are already, that our little kiddos are incredibly resilient. And, with you as wonderful parents her odds are even that much greater.
I am very sorry to hear of the struggles you have been experiencing and what you are going to be going through. My daughter was born with multiple birth defects (Golden Har Syndrome plus extra anomalies). She was in the nicu for her first 6 weeks. She had her first surgery when she was two days old. Within those 6 weeks she had two more surgeries. When she was 6 months she reentered the hospital and was put on a ventilator for 11 weeks, and then had two Aortopexy's and when she was 10 months old the doctors found she a diaphragmatic hernia. During this time we learned she was the longest surviving child in the world. She is now 37. It is a long road so make time for yourselves, continue talking to each other because your baby needs you both. Stay positive. Love the channel
One thing Ive learned is that all kids have some issue. Some more pronounced and serious than others but ALL kids have something and worrying is unfortunately a big part of parenthood. At the end of the day that baby is beautiful and you guys are awesome parents and doing everything within your power to care for her. She's lucky to have you!
Retired Fam doc with three kids and 7 grands. Totally agree. Always something to worry about. No such thing as normal. We all have something. Have Faith.
Desiree, remember your hormones are still crazy and you're still very emotional. I will be praying for Isabella and you to stay strong!
Jordan keeping a strong mind and helping Desiree out is so awesome to see! ❤ hope Isa goes on strong
Really just want to reach out and hug you both. I will pray for you both and the little one!!! My heart just hearts knowing how much you both have waited for this little angel and the stress is unimaginable. Keep making videos and hang in there. Remember your never alone and if overwhelmed you have an army to support you!!
Your love for the little child in your care will make you strong and I know we your public are feeling huge empathy for all three of you. As a father of 8 and also being a very old wooden boat builder I can see what very strong characters and sailors you both are. Only the strong are tested. God bess you all.
Dude !!!! Thank you for sharing such sensitive details of your life , I remember when my son was diagnosed with diabetes… such a vulnerable feeling , 17 years later and he’s squatting over 350 lbs
Desiree you are strength personified. Isa couldn't be in better hands.
We are praying for you all and especially Isabella.....She is beautiful. Your family is amazing. You are an amazing Father and Husband......a real man who loves his family above all.
Hi Jordan and Desiree. Isa is adorable and she is very lucky to have exceptional parents like you. You mentioned in the first part of your video that Isa might be missing a carotid artery. I don't know if the doctors there have done this test, but I recommend you ask them if they can do a Carotid Duplex scan - it is a simple ultrasound of the neck vessels that show the flow of blood and can verify if her right carotid artery is indeed missing
I believe in the power of prayer guys. I will continue to pray for Isa and you guys. She will be bless by the lord. Have faith guys. ❤🙏🏻
I really hope that Isabella will live a happy life with good health. My prayer is that her body will develop in a positive and normal way, without any negative effect.
Hello there you two and sweet little Isabella. Repairs repairs and drama are a fact of life and especially on a sailboat. You are inquisitive, informative, courageous and compassionate. It's nice when you can get together with your folks. My prayers go out to you and darling little Isabella. I'm sure she will grow up to be a super lady and yes get Osa a bath. I think I smelled her too. Well oh, good shares to you all and thanks so much for sharing a bit of your life with us, by now.
Good Lord. I'm praying your family!
Never forget that there's no daylight without darkness. Many sorrows turns out to be a blessing in the end of the day. She's unique and special and made by God exactly like she was supposed to.
She is and will be, not only the delight of your life, but your most treasured asset. One day at a time, one worry at a time, enjoy every cuddle and smile, you have got this!
I just wanted to say congratulations on the baby you guys have a good week
A prayer for Issa, family and all involved. A full life of health well being and happiness. For strength and understanding as you go along together. Blessing from God who is with us always knowing all things with his abundant love ready for the asking in his support and help.
I am at a loss for words after watching but Issa is precious bundle of joy and you are great parents I have a feeling she will be running that boat in a few years. 😊
You two inspired us a couple years ago to start documenting our own adventures and empty nesting experience as we have watched your entire journey. What we loved about your story is the raw honesty you share. It's a reminder that there is beauty even in hardship. Spending your life with your best friend, and sharing that with family and friends is a true blessing. This video sends that message so well . Thanks for giving so many people encouragement and inspiration through your honesty. Being in the other side of raising our kids, there will be many highs and lows to come, but you are doing all the right things to navigate through them together successfully. Our thanks and prayers are with you.
My gosh you guys. I am just heart broken over this. The one thing I will say is just keep your strength and health together and never give up. I will continue the prayers and my God bless this beautiful baby girl with nothing more then great health and for her to grow with loving parents.
You guys are strong, I’m sure Issa will be fine . prayers across the ocean.
A big virtual hug from us both. That little girl has the very best parents to get her through her adversities. Never easy even in normal living but on a sailboat that is substantially exposed on YT, doubly difficult.
Where Britons would say they’re crossing their fingers for Issa, we, from Southern Africa would say we’re holding thumbs. ❤❤❤
Hello friends! You guys are amazing parents and I give you lots of credit for figuring all this out while living abroad on a sailboat! Thanks for sharing your experience, it will come in handy to others like myself who want to sail and start a family. I'll keep praying for you all and Issa. Keep enjoying your time in Malta! Fair winds friends! ⛵☀️
You poor darlings. Just wanted to hug you so much.
My daughter was born with a cataract and is legally blind in her left eye. She was a regular at the Bascom Palmer Eye Institute, Duke University, Asheville Eye, and the Eye Institute in Singapore. The doctor said the only thing she will never be is a pilot. She patched her good eye for many years to keep the interaction going with the brain. She’s 20 years old and thriving in college!
You guys keep hanging in there. We're all thinking about you and sending warm, loving thoughts your way. One day at a time.
Such a beautiful baby, a true blessing. Take it one day at a time. You have thousand of extended family pulling and praying for you!
The worrying never ends. She is your greatest adventure
Oh my goodness I can’t imagine. I’m am holding you both close in prayer. She’s beautiful and I am believing she is healed.
There is so much I want to share with you both, but when it's your first child, it doesn't matter what anyone tells you. Just love each other and there will be nothing you can't get through as a family. i promise.
Issa’s health and continued development are in my thoughts and prayers.
She is a lucky girl to have two such loving, caring and parents who will find answers and be prepared for what may happen but love every moment as it unfolds. All four of you are in our thoughts and prayers.
We are fans!! We love your little family and are praying for you!! God is with you!! ❤❤️🩹🙏
I just want to say I love you two and Issa is very fortunate to have you two as parents. You are in my thoughts and my heart.
Best wishes. My mum is 82 and no carotid artery due to a serious trauma. Specialists said body redirects the blood supply. Go well family.
hey "kids" please dont be so sad , she will grow to be a courageous adventurous lovely lady just like mom and dad, my prayers are with you always for your safety and good health to enjoy that precious pearl your have enjoy !!!!! nonna
God is the greatest healer, lean on him and this cute, adorable baby Isabella will be okay soon. Hang in there guys.