Journal

Journal entry by MacKenzie Buckles

As hard as it is to believe, we have a one month old on our hands. Time has gone extremely fast but yet it feels like we’ve been in the ICU for a long time. This past week felt especially long with a lot that went on. 

Hudson was extubated on Monday which was a big step for him but he wasn’t ready for it. By Tuesday morning, he was intubated with the breathing tube again. His medical team informed us that he was needing a ton of support breathing on his own and his stats weren’t looking good. They gave him a rest day on Wednesday and headed to the cath lab for a procedure on Thursday. They wanted to make sure there wasn’t anything else going on that was keeping Hudson from progressing & sustaining without the breathing tube.  They did find a build up of “gunk” that was able to be suctioned out and sent for testing. The sample came back positive for an infection, so he is currently on antiobiotics.  This could have contributed to the failed extubation but we aren’t sure. 

After his cath procedure, there was no clear answer/plan based on the results. The pressure in his left ventricle is in the middle of being too high and being low. So as of right now, the team of doctors are figuring out the best direction and plan for Hudson. Once they have figured out a plan, we will meet with them and discuss all of our options moving forward.  Hopefully that will happen this week and we can have our questions answered. 

Currently he is stable, and is connected to a pacer to help with the irregular heart rhythms. He has had a good weekend resting and building up strength. The road ahead is going to be long, scary, and intense. To be completely honest with you all, we are feeling really down with all of the setbacks this week. We so badly want to be heading home with our baby in our arms but that just isn’t the case yet. We know it will be all in the Lords timing but we could use prayers for patience & peace in the waiting. 

On a more positive note, we both have been able to hold our sweet boy more this week. Kyle got birthday snuggles which was the best gift ever. Additionally, we have built a lot of relationships with people here & for that we are grateful. We even had a few doctors fighting over Hudson so it’s been wonderful knowing there are so many people in our corner here in Boston too. Thank you all for being part of “Hudson’s Crew” at home and for the continued love. Much love. 

Patients and caregivers love hearing from you; add a comment to show your support.
Show your love and support for Hudson Crew.
Make a donation to CaringBridge to keep Hudson Crew’s site up and running.

Journal entry by MacKenzie Buckles

Three weeks ago today, a strong little boy came into our lives. Ever since that day, Hudson has shown us that he is moving at his own pace and no one else’s. He already is developing a little personality which has been fun to watch. Hudson hates a wet diaper, instantly throws a fit until he has a clean bum. He does this eyebrow raising thing where he keeps his eyes closed but moves his eyebrows up and down. He loves playing with his tongue but is really over the breathing tube. Hudson does calm down when his mommy sings to him, and plays his favorite songs on the guitar. (A music therapist brought a guitar for me to use when here with Hudson 💙)

The biggest obstacle Hudson is facing at this point is the breathing tube. He is over it and so are we! The respiratory therapists have Hudson doing what they call sprints. He is taken off the ventilator for a couple of hours at a time and does all of the breathing on his own. He started off very weak but slowly built up the amount of time he could manage breathing on his own. However, the more support they dropped, the harder it has been for Hudson to do all of the work on his own. He hasn’t taken a step backwards necessarily, but is just very slow at building his stamina to last on his own. They ended up taking him to the cath lab to observe his diaphragm when taken off the ventilator. They didn’t see anything wrong with it, so it truly is just a matter of being so little and unconditioned after such an invasive surgery at 4 days old. So, the biggest thing is to keep sprinting him so that Hudson can build up the strength to last longer without any breathing support. That way we can get this tube out and keep moving forward. 

They did perform another echo this week and we were surprised to hear that the left side of little mans heart looked better. It still isn’t functioning normally or functioning well, but it looked slightly improved when comparing the images from his previous echo. We are taking that as a win! 

The other big win this week was finally getting to hold our precious boy. On Tuesday I was able to hold him for close to an hour, and on Wednesday Kyle got to hold him for about a half hour. It was only for a short time because it makes Hudson work being out of bed and being held. They opted out of a couple of sprints on those days because it was a lot for Hudson’s little body. It truly was good for the soul finally having the chance to put our arms around him. We will take any amount of time we can get to hold our sweet boy, and let him know we’ve got him. 

As frustrating as it is that Hudson’s progress hasn’t been at the pace we all would like, we are trying so hard to take each day and each little victory as a win. It truly is taking everything one day at a time but that’s the hardest part, especially for a planner like me. I just want to know the next steps, what the plan is, what our timeline is, etc. However, we have to remember that it’s all in Hudson’s time and in God’s time. He knows what his little body needs and we are trusting that this is all temporary. 

Each small win, and your continued love & prayers keep up going. Thank you for reading and for checking in on us. We are so loved and hope you know that you are too. 💙

Journal entry by MacKenzie Buckles

We officially have a 2 week old! Hudson is making quite the impression on all of his CICU nurses with his cuteness & head of hair. His daddy cracks jokes on a regular basis, and the staff is starting to know us by name. (Not sure that’s a good thing or a bad thing...) It has been the longest two weeks of our lives but Hudson sure is a fighter. 

He is progressing in a good direction but at his own pace. There are things the doctors would like to do to push his recovery forward but Hudson is moving at the pace his body is comfortable with, and they are fine with that. At this point, the biggest thing they are working on is getting fluid off of him. He looks SO much better than he did a week ago, but still has a lot of fluid to give. The biggest change we’ve noticed is his little face and legs. He doesn’t look nearly as puffy as he did before, right after his surgery. 

They have taken Hudson off of a few medications and sedations so he is more awake now. We’ve been able to see his sweet eyes and all of the angry faces he makes. It breaks our heart when he cries but nothing comes out because of the breathing tube, but if things continue the way they have been, they are hopeful that his breathing tube can come out soon. Hudson will be much happier then and we will be able to hear his cry again. We should also get to hold him soon which is the reason we’ve been getting up each morning. Even when it’s hard, we show up for Hudson and he makes us so proud to be his parents. 

He is in a big boy bed now and so ready to be held by mommy & daddy. 

Thank you all for your continued prayers and support. Life as ICU parents is no joke, but your love keeps us going. As much as we miss home and would love to know our timeline of busting out of this joint, we have to just keep plugging along one day at a time. So, thank you. Thanks for thinking of us, reaching out, and praying for us. It means more than you could ever know. We will update again soon, maybe with a picture of us holding our sweet boy! Until then, be blessed💙

Journal entry by MacKenzie Buckles

Good morning family & friends. When having a little bit of quiet time in the morning I have found myself so extremely grateful. I know it’s been said but I feel the need to continue thanking you all. The prayers and messages to us mean more than you will ever know. 

We have met so many different families that have children in the cardiac ICU. Some have said they have a good support system at home, others have not. A lot of these babies and children are here in Boston from other states as well and their stories are so different from ours, yet we relate so much. I just wanted to extend another round of thanks to each of you following our journey. Hudson truly is so loved. 

Just a quick update, as I’m sure we will have more after getting to see little man this morning. 

Hudson had his surgery on Monday, and started the recovery process early Tuesday morning. They gave him all day Tuesday to let his body rest and adjust to the new dynamics of his heart. He had his chest open after surgery to let his body get used to everything. They had warned us about this previously and I knew I wouldn’t want to see that. However, when we first got see our sweet boy they hadn’t covered him up like they said they would.

To our surprise, our eyes were glued to his open chest. We couldn’t look away. Guys, we literally saw our sons heart beating. There aren’t many words that we can use to describe it other than how amazing and complex the human body is. We had begged and prayed our whole pregnancy to allow Hudson’s heart to beat and the Lord truly answered that prayer. Right in front of our eyes, we could see how amazing the craftsmanship of God is. 

Hudson’s medical team told us that they might be able to close his chest on Wednesday but his body might need another day. When we got to see our little man on Wednesday they told us his stats were at a decent place and they would be attempting the chest closure procedure. If when they started, his stats dropped or his body was telling them it wasn’t ready, they would stop and try again in a day. 

After what was supposed to be a two hour procedure starting at noon, we had more waiting to do. Closer to 2:00 they were able to start the chest closure and they did an echo beforehand. Dr. T came out and spoke with us to let us know the echo looked good and that they were then gong to do the actual closing of his chest. Time kept on clicking by and we grew anxious waiting. Finally around 5:30 we were able to go back and see him. Hudson’s stats were all over the place but that is normal for a child after a chest closure. His sweet body had a whole new geometry to it and it needed time to adjust to life with a closed up chest. 

The more we sat with Hudson, the more we saw his stats start to even out. We needed to see his blood pressure go up, but his heart rate go down and as the night went on, we saw a little bit of that. The biggest win for Hudson in this procedure was the fact that he no longer is relying on his pacemaker. His amazing warrior heart is keeping a steady heart rate on its own and that is truly remarkable. They have a pacemaker as a backup but we are taking this as another big hurdle Hudson has jumped. 

After getting some rest we are eager to get back and see how our sweet boy did overnight. It is going to be a long road to recovery but we are taking each baby step as it comes & going one day at a time. Sometimes, we even take it hour by hour. 

Thank you all for following along and for rooting Hudson on. We can’t believe he is already a week old today! Keep the prayers coming! If you could add the number of families with children in the cardiac ICU to your thoughts/prayers we would greatly appreciate it. Be blessed today, friends. 💙

Journal entry by MacKenzie Buckles

Monday May 13, 2019 will go down in history as the longest day ever. We were told that Hudson would be having surgery around 7 am and that we could have some time with him before hand if we would like to. They let us bend the rules and have more than two people in his ICU room leading up to his surgery. Along with Kyle’s parents and my mom, we had some quiet time with Hudson early Monday morning. Shortly after 7 am we were informed that his surgery was being postponed until later on Monday afternoon. Another baby needed the OR more urgently. 

We have gotten really good at waiting but this was still extremely difficult. In the meantime, I was discharged from the hospital and we were able to get settled into the family waiting room of the cardiac ICU for the day. As time got closer, we went in and spent more time with our little man before the surgical team came for him. Kyle and I were able to ask questions (well, really only Kyle did because I couldn’t form any words), talk with the surgeon, and send our sweet boy off. We also made sure to ask what the surgeons favorite cookie was so his grandma Buckles could bake tons of cookies after he completed a successful surgery. 

Kyle and I walked with the surgical team and Hudson as far as they would let us. We were able to kiss our little boy to send him off. The waiting began, the tears continued, and the prayers were long. 

We passed the time with our family that was able to be with us. Played some games, had some dinner, and tried to keep busy. Of course, with Hudson’s Great Grandpa George in the room, some laughs were shared as well. 

We were given updates as the hours went by which was very helpful for us. Every few hours we got a message that Hudson was doing well, tolerating everything they were doing so far, and even when the first incision was made. We were told when Hudson was being put on bypass, which meant the bulk of the surgery was happening. As the night grew later, we became more anxious but having the updates to check in helped put our hearts at ease.

The final update was that the surgeon would be out to talk to us and give us more details. After a gruesome 7.5 hours, the surgery was done. Dr. Baird spoke to Kyle and I giving us details about what he was able to accomplish in the surgery. He replaced Hudson’s aortic valve with his pulmonary valve, and gave him a replacement pulmonary valve. He also did a reconstruction to the arch, removed the stent that was put in for the atrial septum the day he was born, removed some EFE, and told us that Hudson’s left ventricle was functioning.

OUR LITTLE MAN DID IT, YOU GUYS!

Hudson is a warrior. And YOU are all his prayer warriors. 

Kyle and I were able to go back and see Hudson briefly in his new cardiac ICU room, and our hearts were more at ease. Honestly, it was easier to breathe. We are so grateful for our families and for all of you for your support. We wouldn’t have made it through the day without the reminder of how many people were praying for us and thinking of us. We apologize for not updating sooner but having been at the hospital until 1:30 am, we needed to try and get some sleep. If we haven’t gotten back to your messages, please forgive us. This has all been such a whirlwind but please know our hearts are full because of you all & because of the grace of God. He guided the hands of the medical team, and helped Hudson have the strength to endure such a long & difficult surgery.

At just 5 days old, Hudson is recovering and doing well. All of his nurses and doctors are taking such good care of him and he is sleeping peacefully. We long for the day when we can see his eyes, get to hear him cry again, and hold him for the first time. We are cherishing every minute we get to spend with him and every kiss we can give his sweet face.

We are more at ease knowing he is stable but this is still going to be such a long road. Thank you all for cheering Hudson on and praying for his strength. If it’s not too much to ask, we covet your continued prayers for his recovery and everything that will come with it. Much love to you all. 

P.S. If you’ve never listened to the song “I am Not Alone” by Kari Jobe, you really should 💛💙

P.P.S. So many of you have asked to see a picture of our sweet boy and we thought it was time to share. Everyone, meet Hudson Crew Buckles, born on 5/9/19 weighing 7.5 pounds, 19.5 inches long. This photo was taken before his surgery 💙

Journal entry by MacKenzie Buckles

Just a quick update for right now because we know so many of our family members and friends are eager for news on Hudson. He had a good weekend for the most part and has taught us so much already. The doctors and nurses on his team have been so kind to us and have walked us through every scan, test, and decision so far. Hudson is still showing he is one tough cookie with everything his little body is going through.

However, it is time for him to have his first surgery. He did not end up having a surgery on Friday like they originally thought he would. They gave him the weekend to rest and to see what his body could do. It’s been a lot of ups and downs but Hudson is staying stable through it all.

Tomorrow morning (Monday) he will undergo his first heart surgery. Please, please join us in prayer if you think of it as the medical team operates on our sweet boy. May they have steady hands, and may Hudson come out of this surgery showing his true strength. We will update in more detail when we know more but for now, we truly covet your prayers. Thank you and we love you all.  

Journal entry by MacKenzie Buckles

It is with full and joyful hearts that we share the news of our son’s birth on May 9, 2019 around 2:45 pm. After being told our c section was moved from 11:30 to hopefully 2:00, it made for an extra long day. However, we’ve gotten really good at waiting!

Hudson Crew made his appearance and fought like a true warrior. He had a team in the OR to help during his birth consisting of about 20 doctors, fellows, attendings, nurses, you name it! They each had a role to play and it was truly amazing watching Hudson’s birth unfold. Everyone was on the same page, they gave us updates as they went, and they took such amazing care of our handsome little boy. 

Hudson came out with a good set of pipes, and cried! This was a lovely surprise to Kyle & I as we knew his lungs wouldn’t function properly at birth. We knew there was a chance he would come out and need immediate resuscitation but this wasn’t the case! He held his own and showed just how mighty he is. As the team of doctors continued working on me, Hudson’s “crew” (sorry, I had to be a little corny) took over and immediately gave him the care needed. His stats looked okay but they weren’t in the range his doctors wanted them to be in. So they did place his breathing tube, and sedated him right away to give his heart a chance to relax without putting too much strain on it. 

We were able to see him for a minute or two before the NICU team transferred him over to Boston Children’s Hospital. He was sleeping so peacefully (being sedated) and we quickly had an outpouring of love for our sweet boy. It was extremely hard not being able to hold him, and we still haven’t been able to embrace him, but we know that he is getting so much attention & amazing care here at Boston Children’s. Everyone keeps saying how handsome he is! 

Kyle was able to travel with the NICU team and Hudson over the bridge to Boston Children's. He waited in a waiting room with his parents while I was sent to a recovery room and joined by my parents. We were so thankful to have both sets of our parents here with us on such an emotional, yet beautifullong day. 

Kyle was given brief updates as Hudson underwent his first surgery and so kindly called to keep me updated. Hudson did well during the procedure, his vitals looked stable, and he tolerated everything they did. When they went in and did the balloons on the aortic valve and atrial septum, it opened up blood flow like they had hoped it would. So their procedure and plan worked, however, due to the pressure of the blood flow, a leak had formed. 

To address this issue, the doctors informed us that Hudson will most likely need another surgery today. This morning he will be having an echocardiogram so they can take more images of his heart and see how he did overnight. With his daddy sleeping by his side, I am confident he slept well on his birthday. 
Once we have the echo done and they have reviewed the images, we will know more.

I know how hard it is to play the waiting game to hear how everything is going, trust me! So we did want to update all of you, our Hudson Strong tribe. We cannot thank you all enough for your prayers, messages, and support. I know our families on both sides have had friends check in with them too, and that means a lot to us. They sure are proud grandparents, so thank you for thinking of our parents as well. 

So many songs and verses came to mind and were shared with me leading up to everything yesterday and I wanted to share some of them with you. May you find comfort in these on this Friday morning! 

John 14:18
”I will not leave you comfortless, I will come to you”. 

Psalm 61:2
”When my heart is overwhelmed, lead me to the rock that is higher than I”.

Journal entry by MacKenzie Buckles

We have officially been in Boston for a week now, and what a week it has been! I had a total of 8 appointments last week and time really flew by. Before I knew it, Kyle was here and my heart has been at such ease ever since. We wanted to update you all on our appointments and on little man. 

On Monday, we had our fetal echo with Dr. T who we had met on our short visit to Boston back in March. They did another extensive ultrasound examining Hudson’s heart. We were pleased to hear that everything with his heart is still stable and the same as what they saw a month prior. H is holding on and fighting strong! After the ultrasound & fetal echo they went over everything in detail for us. Dr. T and his NP explained to us what the procedure is called and what they will be doing when Hudson is first born. Basically, the first hour of his life is extremely critical and fragile. He will be undergoing a procedure called coarctation to address the blood flow issue, and then they will insert balloons into his atrial septum and aortic valve. The intact atrial septum is the biggest concern and will make things very complicated. However, they also informed us that H might not have full blown HLHS. Once they take a closer look at everything in his heart at birth and after his first surgery, he very well could have two functioning chambers to pump blood. It definitely got our hopes up but nothing for Hudson is going to be straight forward and simple. We have to wait and see how he responds to this first surgery, but it is very hopeful knowing that he is kind of in between things right now. 

They sent me for an MRI and ultrasound later in the week to check little man’s brain and lungs as well. They wanted to make sure no fluid has gotten inside his brain and lungs, and that they were functioning properly. Everything from the scans showed no fluid inside either, but we do know his lungs might not function properly at birth. Overall, everything looks good and that was another blessing! 

On Wednesday, I had 4 appointments all in one day. Needless to say I was exhausted after everything and I still feel like I’m recovering from it! However, it was another day full of good appointments. We had a regular growth ultrasound and got to see our sweet boy. He is all Buckles, looks more and more like his daddy each time. So adorable! As of this ultrasound, he weighed about 7 pounds, 5 ounces. Later in the week at a separate ultrasound, they measured him at 7 pounds, 12 ounces. Either way, we know he is growing like a weed and mustering up all the strength he can to show everyone how strong he truly is. 

The rest of of our appointments consisted of meeting my OB, going over a delivery plan, meeting with the teams of people that will help provide care for Hudson right at birth, a genetic counselor, and a cardiologist to check in on my heart. These appointments all went well, and we learned a lot. It definitely was a lot of information and overwhelming at times but it was good to hear. The toughest conversations were around what the delivery room will be like and what could happen as Hudson is born. I am glad they started to prepare us for what is to come, but it still is extremely terrifying. It all sounds so complex and intense but I know we are in good hands here at Boston Children’s Hospital and Brigham & Womens. 

We do want to update you all on our delivery plan as we feel it is important to let our prayer warriors know in advance. After all of my appointments last week and tons of conversations with each doctor I met with, we have decided to have an elective c section. Taking everything into consideration with the intensity of Hudson’s heart condition, his size, how critical the first hour of life will be for him, having the right team of people ready, and everything he has going on, it was a decision we made to give our little boy the best shot we can. I will be having a c section on May 9th and the OR will be full of people ready to give Hudson the best possible care they can. We feel at ease with this decision because it is something we can plan for and know that we are doing everything we can for him. With all of this said, we still ask you to join us in prayer in the upcoming week and a half. As much of a planner I am, there is still a ton of unknowns & what if’s providing anxiety and fear for us. 

Thank you all for reaching out to our family, for the cards, for the love & prayers. We are so overwhelmed by our community of people from all over rooting for Hudson and praying for us. We can truly feel the love, so thank you. With only a couple of appointments this week, we are going to try and do some exploring around Boston to keep our minds occupied. Going to see a Red Sox game tonight, but don’t tell my dad! You also shouldn’t tell him that I may have bought Hudson some Red Sox sneakers....shhhh! 

Thank you all and we love you! We will update again soon! #hudsonstrong

Journal entry by MacKenzie Buckles

Well friends, we made it. Since March 18th we’ve been praying and hoping that Hudson would remain stable & strong enough to get us to Boston. It was our first hurdle to getting him the best care we can, and we did it! As hard and emotional as it was leaving home, I’m slowly starting to cope with the fact that we need to be here and we are in the right place to get Hudson the absolute best care possible. Change is always hard, and for me I think the hardest part of coming to Boston. Not knowing how long we will be here, leaving my snuggly puppy at home, support of friends and family back home, etc. Now that we are feeling more settled, my heart is more at ease. I will feel even more at peace when Kyle gets here this weekend, but having mom with me is a huge blessing. 

We arrived safely on Easter Sunday after adding an additional hour and a half to our trip due to traffic. We stayed at a nearby hotel for the night and got up early to head to Boston Childrens Hospital for my first appointment.  I had my 14th ultrasound today which is wild. We had another fetal echo where Dr. T and his team looked at little mans heart. He was pleased to see that Hudson has had no major changes! Everything is stable and looks the same. He has some flow from the aorta but still not enough. 

After the echo, we were able to meet with him and the nurse practitioner again to go over the status of Hudson. After explaining that he is still stable, they went into more detail about what will happen at birth. The goal is for us to make it to 39 weeks because the stronger H is, the chances of survival are higher. Dr. T explained what will happen when Hudson is born. He will be taken directly over to Boston Children’s to the cath lab for his first procedure. The first hour of life is critical and the procedure he will have to start would be a life saving surgery as long as he responds well to it. There is still a chance H won’t make it, but we are choosing to think positively that he will show his strength & how big his God is. 

The first thing that Hudson will have done is called coarctation to direct the blood flow. Right now there is some flow, but not going in the right direction or to the right parts of his little body. They will then go in a place two balloons in his heart on the atrial septum and the aortic valve. After this first procedure, lord willing he makes it through it, they will let Hudson rest for a few days and see how he does. This procedure could potentially show us that Hudson doesn’t have full blown HLHS, but just has other issues with his heart. (Blocked atrial septum and aortic stenosis). The flow could be directed in the right direction and the left side of his heart could catch up. Basically, it’s hard to know the exact remedy and algorithm for his surgery and first couple days of life until he is born. Once they can get to his heart and truly see what is happening, we will know more about future hurdles we have to jump. For now, Our first hurdle is making it to 39 weeks. (I’m currently 36 weeks). The Second hurdle is tolerating and surviving the first procedure right at birth. From there, we don’t know what will come next but we do know how loved our little boy is, and how strong (and stubborn too) he is. 

Its a lot to take in, but we are just so thankful Hudson is still active, moving around like crazy, and stable at this point. He has given us quite the adventure! Never thought I would have to move to another state to have a baby, let alone deal with the insane traffic, but it is all part of the journey. After all, Hudson does mean adventure and we are ready to see this adventure unfold. 

Thank you all for your support and continued prayers for our family. We have been overwhelmed by all the love, so thank you. We are getting settled into our home for the first 3 weeks of living in Boston. We are staying with a host family in a gorgeous neighborhood. The houses are beautiful, lots of places to walk, and we have a lovely studio apartment to call our home. I am looking forward to meeting the family, especially their 4 kids and sheep dog named Bingo! 

I have 6 more appointments this week, so I am bound to write another journal entry. In the mean time, I wish you all a blessed week! Thank you for your continued support.

Journal entry by MacKenzie Buckles

We had our regular growth ultrasound yesterday and another NST! Hudson's heart rate did everything it needed to do again for another awesome Non Stress Test. We then got to see our little man again during the ultrasound. He truly is a Buckles baby! He has so many features of Kyle and is growing big & strong. He is weighing in at 5 pounds, 13 ounces which we were surprised to hear! That is in the 80th percentile but still sounds big for being 34.5 weeks! Hudson is growing healthy and strong!! Other than his heart, he is measuring appropriately for almost 35 weeks. Of course, Hudson pulled his typical stunts and moved like crazy during the ultrasound but he always makes us smile. 

We are so grateful that Hudson is still growing and moving like crazy. Time sure is flying by as we make the plans to move to Boston in the next 10 days. As we prepare, we are still so overwhelmed by all of the love and support all of you have shown us. We have received such thoughtful gifts too that will forever be cherished. Thank you all for your continued prayers for Hudson and for our move to Boston. With much love, Kyle & MacKenzie. 

Journal entry by MacKenzie Buckles

Two months ago, our lives were forever changed. Never before did we imagine to be having a great pregnancy one minute, and receiving life shattering news the next. We want to catch our family and friends up on what has been going on with our sweet baby boy, Hudson Crew Buckles.  

Due to my heart condition, we had a scheduled fetal echo cardiogram at RGH on January 7th. The ultrasound would allow us to know if Hudson had inherited my heart condition (aortic bicuspid valve), or if he had any other defects with his heart. The rest of this appointment is a blur to both Kyle and I as we received news that there are major issues with our precious boy's heart. We were presented with a condition called GACI and that he could potentially have this rare disease where only 900 cases have been reported worldwide.  The doctor then discussed how this is a very bad disease and highly fatal.  She then convinced us that we should do an amniocentesis.  Now, Kyle and I discussed previously that we wouldn't do the genetic testing because no matter the results we would be keeping our baby.  But, during the whirlwind of emotions and never been in this position before, we succumbed to scheduling the amniocentesis to see if further issues would be detected. After a painful wait for the results, we received news that the genetic testing had been completed and showed no issues.  During this time of waiting for the results, we were referred to Strong Pediatric Cardiology for more testing.

Our doctors at Strong were so kind to us and walked us through the issues that they saw with Hudson so early on in our pregnancy. Our first visit was at 22 weeks and we were told that Hudson has a congenital heart (CHD) defect known as Hyperplastic Left Heart Syndrome (HLHS). In addition to that, he has a highly restricted atrial septum, severe aortic stenosis, and a leak in his mitral valve. Which essentially means that he doesn't have a functioning left heart. The HLHS alone is a very rare condition but becomes even more rare when the other 3 issues are tacked on. We were told that the chances of Hudson surviving the pregnancy were very slim but that we would continue to monitor him every 2 weeks. This was a unique time when we had this appointment.  After the news that our baby has HLHS, the doctor mentioned ever so subtle that termination was an option.  We debunked that as an option and explained our beliefs.  What makes this unique, is that our next appointment (2 weeks later) was after NYS passed the legislation that a baby can be aborted up to delivery.  We stayed true to our beliefs, and reminded our doctor that no matter what we would be keeping our precious little boy. 

As the month of January was a complete blur to us, we continued going to Strong every 2 weeks and getting the opportunity to see our sweet boy on the ultrasound. He never ceased to amaze us with his movements, acting stubborn for the ultrasound techs, and his sense of humor. Appointment after appointment we were reminded of the severity of Hudson's condition and that he might not make it to term but we continued to trust the Lord. Instead of focusing on the "what ifs" and the negatives, we chose to look at everything one appointment at a time and to cherish every kick/movement felt. The only advice the doctor's could give us was to keep having a healthy pregnancy and to continue coming to monitor him bi-weekly. It was an extremely rough road, and still is, but each day is part of the journey. Thanks to the support of Kyle and our immediate family, I continued to work out 5 days a week, make healthy eating choices (with the occasional cookie or bowl of ice cream), and to stay healthy/strong for Hudson. He was my motivation and still is. We press on for him and daily ask the Lord for strength. 

Fast forward a little bit.....As time has passed, and we've been to countless appointments, Hudson has remained stable. He truly is a heart warrior and we are so grateful that God chose us to be his parents. The most recent fetal echos at Strong have showed that Hudson's little heart has remained stable and hasn't progressed for the worse like predicted. He is tolerating the pregnancy and his CHD okay at this point. We even saw a little flow through the aortic valve whereas in the past, we saw no flow at all! God is good! 

Now that we are at 29 weeks, the next steps are to decide where we will deliver and when it is time for little man to make his appearance. Due to the severity of Hudson's CHD, we will not be able to deliver anywhere close to home. There were some options to consider but it came down to the hospital that will have the best possible care/team of doctors for our little boy. Boston Children's Hospital has doctors who specialize in the surgeries/care for children with HLHS and they have been collaborating with Strong Pediatric Cardiology on our sweet Hudson. They have asked us to come for a fetal echo and appointment with their Advanced Fetal Care Center. 

We are very hopeful that Boston will agree to us delivering Hudson there & giving him the surgeries/care he will need immediately after birth. Please pray for our upcoming appointment on March 18th with the team at Boston's Advanced Fetal Care Center. 

We are asking for your continued prayers and support for our little family. We also want to apologize if we haven't been overly excited when talking about the preparation for our baby. It has been a lot to process but we thank God for His grace and strength each day! Each appointment, every tear, and all of the heartache has allowed us to grow closer together and in the Lord. 

"I knew you before I formed you in your mother's womb, and before you were born I set you apart." -Jeremiah 1:5

"Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." -Isaiah 40:31
Hudson Crew’s Story

Site created on March 5, 2019

Hudson Crew Buckles is a warrior. He has a lot going on with his little body but is a fighter. We wanted to have a place where we could update our family and friends on Hudson's story and our journey. Thank you for coming alongside our family during this time and we covet your prayers. This will simply be a way to keep family and friends in the loop. This site is not intended for financial support, rather, asking for your support in prayers. 


Mommy sings to Hudson every morning, "This little heart of mine, I'm gonna let it shine."

SVG_Icons_Back_To_Top
Top