The Hudson Myles Family Story

Not every journey finishes with a happy ending, however, that doesn’t mean that

happiness and cherished memories can be found along that journey. Each journey and those who are along that journey are different and unique in how they perceive the world and how they process the events going on around them. I am Chris and my wife is Page. We are lucky that while we differ in some of our perceptions and processing, Page and I both look at the world with hope and appreciation. Hope for what the future brings, not just for us as parents, but us as partners. Appreciation for the time we had with our son and appreciation for one another and the support we received from one another throughout our entire journey together. The other thing that has helped us to adapt is that we communicate. There is never judgment when we feel things, we allow each other to feel feelings, then talk and support each other. Both of us are also very honest and direct, which can be unintentionally hurtful to others, but we find that works

best for us. Any and every conversation with Hudson’s medical team began with, be honest, be direct, and give us the worst case scenario and we can build from there. We just wanted to provide some insight into how we generally process and interpret the world around us so there is some context while reading this. For a complete look at his journey in the hospital feel free to look at his CaringBridge Website It is incredibly detailed.

Pregnancy & Projected Diagnosis

We had spent months trying to get pregnant and we had finally achieved success. Our excitement and joy was through the roof, however we always tried to temper our excitement and just keep going from next step to next step, appointment to appointment. We completed our NIPT test, which is the blood test to determine genetic anomalies, along with gender. We were waiting to get the results more so focused on the gender as opposed to any concerns we had for genetic anomalies. We got the results on a cruise with some friends, we wanted to be surprised so we had a friend read the results and were told everything looked great. Once home, we had our friend who was organizing our Gender Reveal review the results to determine the gender and plan accordingly. Page was with her and I was at our home when the results were read. Page had called me to let me know that we were 98% positive for Trisomy 21 or Down Syndrome. As you would expect there are definitely some mixed feelings and some tough conversations. We both agreed that termination of the pregnancy was not an option for us, we were too invested and frankly, the diagnosis didn’t matter to us, this 

was still our child. Where we did differ is how we processed and perceived this information. I had a much more simplified interpretation of this situation, this was my child and that was that. I looked at it as I was going to be a father and while things would be different, I love our child and that will be enough. Page had a more complex thought process with our situation and went through a period of time mourning what was how she imagined being a mother to this child would be. All the different things she had pictured, memories they would make, things they would do, changed a bit for her and the simple fact that things would be different purely by having this projected diagnosis. We were great at supporting one another through this initial wave of emotions through communicating pretty much everything. We had an appointment in the next few days so we went to our regular appointment and were promptly redirected to MFM (Maternal Fetal Medicine) for follow up. It was at that appointment we were presented all the options, termination, amniocentesis, and continuing pregnancy. Based on some of what we have heard, we are lucky that our medical team did not push, insinuate, or try to direct us down any route, they just provided the steps for what each would look like and told us to think about what works best for us and decide. Since we had already had the conversation, termination was not on table for us to consider. This is our child, and we are seeing this through. We also declined to get the amniocentesis, as that did come with a risk of miscarriage. We chose to continue the pregnancy, a decision we would definitely make again. After we made that determination, we were told that about 80% of Down Syndrome pregnancies don’t make it to full term. We interpreted this as a late term miscarriage as opposed to premature birth. So we walked out of our appointment thinking there was an 80% chance that our child would not survive pregnancy. This was our fault for not clarifying, but it was something we believed for the remainder of pregnancy.

A couple weeks later we hosted our Gender reveal and found out we were having a baby boy. The name we had selected for him was Hudson Myles.

4 Months Pregnant Until Birth

As appointments ran onward we continued to watch him grow and get bigger and stronger. We continued our preparation work at home. Page was a flight attendant and was working a trip from Baltimore to San Diego. Upon landing she felt incredible “ickiness” as it was described to me. Fortunately she was able to shift her trip to get herself to Los Angeles where some of her siblings live. I got the call that she was being admitted and in labor in California, so I prepped the house to be gone for awhile as this was not going to be a short trip. After a few days of Page being nothing short of strong, amazing, and absolutely beautiful, our son was born at 24 weeks on 6/11 at 4:06am. Weighing an incredible 1lb 4.6oz, Hudson was small, but a fighter. He was such a relaxed baby that not only did he not cry, but the NICU team said he was one of the easiest high risk births they’ve had. Regardless, Hudson was going to require a lot of care and love to survive.

There are so many things that not only go through your mind, but that you feel when in this situation it can be overwhelming. There was so much to memorize about his condition and how to make positive steps forward. There were 2 things told to us within the week of his birth. The first thing we were told was that there was no real data on an infant born at 24 weeks with the medical issues he had, so most of what we were going to experience was not only new to us, but going to be new to his medical team. The other thing we were told is that his chances of survival were going to be very low since everything was going to be a risk/trial and error. With this we pressed on.

66 Days from Home

Obviously we are still in California through all of this. Little did we know that over the course of 66 days we would completely lose our sense of days and time. We spent our early mornings together, making sure to maintain our relationship as even though we are parents, we needed to make sure that we are still caring for each other as partners in a relationship. The remainder of our days were spent by his side, just letting him know we were there and giving him love. Day 1 was a lot of happiness and a great deal of trepidatiousness as each decision made for him had to be carefully made as everything was a life or death decision. Every day we basically had to hope we and the medical teams were making the right calls otherwise it could kill him. 

By Week 1 or day 7, we learned he had duodenal atresia. This is when the stomach doesn’t connect to the intestines and so food can’t be consumed or processed. At 1lb 4.6oz’s Hudson was too small for this surgery, he needed to put on weight. To do this he was given Total Parenteral Nutrition or TPN, which would give him all his daily nutrients and calories, but it was slow going and caused Jaundice and Carotenemia which turned his skin orange from too much beta-carotene. There were consistent echocardiograms to check his heart, blood transfusions, several rounds of antibiotics due to various infections in breathing tubes, his PICC line, and more. This was all within the first few weeks and it was compounding stress.

Page and I adored our time with Hudson, even the hard days and tough decisions, we both felt a sense of ease just being with him. We knew that if we were stressed and brought that stress into the NICU, he would feel that and it would be much harder for him to grow and recover. As we put it, stress stays at the door, with him we bring nothing but smiles and positivity. We could really see the difference in how we were with him and how it would be in other parts of the NICU.

To be clear, it’s a monumental task to set aside your own stress and issues and fully devote yourself to one person and fully commit to that. Life has a way of hitting you in the face even when you're trying to show the world a smile, so we completely understand how it would be hard to check that stress at the door and come solely positive for him. The difference in how well he did was nothing short of astounding, so the more you can put that stress aside temporarily and deal with it later, the better.

Hudson was diagnosed with a Patent Ductus Arteriosus or PDA which causes abnormal blood flow between the aorta and pulmonary artery which can cause heart failure and lung failure. Another aspect to Hudson’s first month were the ever changing events. His PDA mentioned earlier, would open and shut seemingly at random. We would be so excited it would close, only for it to re-open hours or days later, and vice versa. Needless to say there were many things to keep track of and balance when making decisions and spending our time with him. We did a good job of addressing those issues, concerns, and stressors outside of the hospital. Whether it was at dinner or on a walk around the hospital, we always spoke to each other with respect, kindness, and care.

Always allowing each other to fully share and express their thoughts and feelings on what would be next steps and what was best for Hudson. We agreed on things for the most part, but not always. For those times we disagreed, it was always a calm conversation where we looked at facts and evaluated from that perspective. Ultimately always agreeing on what we determined was in his best interest. While difficult to not let emotions carry us away on this wild ride, we managed to always center ourselves and objective decide how to get Hudson to the next level or stage of care.

Since Page and most of her friends are flight attendants, it was easy for them to come out and visit her to provide helpful and much needed time to be herself. I think sometimes the expectation is for everything to be constant, but to make sure we are at our best for him, we had to make sure to take care of ourselves along the way as well. Those breaks for some Mom time for herself with friends were much needed and I will always be grateful to everyone who was able to come out and make sure she was taken care of. It helped for her to show up her best each day for Hudson that she had some micro breaks in there from time to time. 

 What surprised us the most was just how quickly his personality became apparent. Even with all his medical needs and on goings, he was the most relaxed and fun loving baby. He loved holding our hands and would flash smiles when we were near or open his eyes and stare. He would blow bubbles out of his mouth around his breathing tube and smile. He had a favorite toy, which was an octopus he could pull and play with. He loved sleeping on his tummy, like that was his jam! I am forever changed for the better seeing how much he loved his Mom, it’s the most beautiful thing I’ve ever seen. Even at weeks old he would hear her voice and would instantly fight to wake up and wiggle in his neonatal incubator because he was so excited to see his Mom. Her presence brought him such joy and calm, he never flinched at any bloodraw, shot, poke, or prod, he was never bothered by anything.

The beginning of July was strenuous to say the least. To start with some positives, we officially received the diagnosis for Down Syndrome, we already knew going in that he had Down Syndrome so this didn’t come as a shock, but it was nice to finally receive something official. We got to hear his voice for the first time, it was small, but his tiny grunts absolutely melted our hearts. As we couldn’t have been more endeared to Hudson, hearing his tiny voice definitely pushed us to grow more and more attached to our son. His medication needs were decreasing and they were moving towards extubating him and putting him back on a nasal cannula for his breathing needs.

Page got to finally hold him after almost 3 weeks of not being able to hold our son. This was so powerful and so meaningful to us as it required his nursing team to manually bag and breathe for him, just so she could hold him. It’s things like this that make a difference for us and ultimately for him, he was literally beaming with joy being held, cooing, making noise, he was so happy to finally be in his Mom’s arms. He was definitely bathed in the love that we have for him. We are really grateful to one of his respiratory therapists Carmen,  who made every effort to give us those memories and that feeling, she is truly an angel. There was so much to be positive about in the beginning of July. 

As with life and as with being in the NICU, there are good days and there are bad days. His CO2 levels spiked and not only did he have to be intubated, but we came very close to losing him. I honestly couldn’t describe our experience any better than what I wrote for his Caring Bridge website. It is below:

Today Hudson has taken a turn for the worse. We are filled with anxiety, stress, and feelings of helplessness. We are reminded that the beauty of life and being human is the fragility of life itself and the challenging emotions that come with it. True strength doesn't just refer to the physical body, but to our own personal battles and how we choose to respond to them. We have taken every moment with Hudson with positivity, love, and affection. No matter what happens today, Hudson knows that he is loved by many and his parents have been in this fight with him since day 1. We have brought unyielding positive embraces, talks, and moments with him and that has not, and will not change.

While Mom and Dad are positive and will remain as such. We are reminded that if we are feeling disheartened, that when we feel we have not done enough, to fill our hearts with passion and positivity. To push past the negativity and envelope ourselves with positivity for Hudson and for each other. It's hard to not fall into negativity, but the flow of time waits for no one. Time doesn't stop for us to grieve, so we hold our head high, live every moment with him in a positive way, and set that positive example for Hudson. It's hard to fight these scary and negative feelings, but for Hudson, we believe in him. We believe he will continue to grow and be a shining example of his parents commitment to looking at the world with passion and positivity. 

Update: Hudson spent most of today on life support. His levels and vitals hit some serious lows, this is the closest we have been where we thought we were going to lose him. He was not breathing at all for most of today and needed 100% machine breathing. The impact from being on the breathing tube to his lungs has also done some extensive damage, possibly permanent. So much so that when we arrived there were some very tough conversations about his current status and possible responses in emergency. He is doing a little bit better and is not on an as intense life support, but still on life support itself.

We are back to taking things hour by hour and at this point know that anything could happen at any moment. Just as we stated earlier, we will continue to be positive in our interactions with him, with the understanding that time with our little sunshine may be limited.

It was incredibly difficult to balance staying positive while also trying to mentally prepare yourself for the possible death of your child. Taking the time to live in and appreciate those moments with them while you have them helps. When we were with Hudson it was all focused on him, so I didn’t worry or struggle with those thoughts while with him, since I just wanted to be in those moments and have those beautiful memories. We would balance those thoughts and decisions outside of the hospital to make sure as parents we were on the same page so that we made decisions that were mindful and less emotional. This all came to a screeching head as the day the posts above were made, the hospital approached us with 2 choices, we keep fighting and push forward with healing or we make him comfortable and let him go. In any case, it would be understandable that anyone would freeze at that moment and struggle with what is in the best interest of their child above all else. Page and I knew that we would press forward as our son was a fighter and we were going to honor that fight. Being faced with that choice can cause a myriad of issues for us as individuals and as a couple, however since we had made sure to put ourselves on the same thought process, the decision was simple. Unfortunately, it would not be the last time we would have that type of conversation and it would be under some different circumstances.

As the days pressed on, he slowly recovered and slowly started putting on weight again. Only for the roller coaster to set in and he would take 3 steps forward and 2 steps back whether it was his breathing, blood pressure, or some other significant medical impact. This yo-yo of emotions definitely was strenuous to us. Any time we were out of the hospital we made sure to always talk about how we were feeling, stressing, and coping with everything going on. For myself, I was balancing work on East coast time, visiting my son, and maintaining not just the relationship with my partner, but also trying to make sure both of our mental health status were balanced and healthy. For Page, she was balancing these decisions with our son, along with her mental health and our relationship. These dynamics could have caused a destructive environment, but thankfully we kept that balance by allowing ourselves time for ourselves, without missing time with Hudson. Hudson’s playful personality, laughter, and love definitely kept those negative feelings at bay. He was always so excited to see us and actively wake himself up, just to interact with us. Truly an exceptional baby. 

Hudson finally moved from St. Providence to UCLA Medical Center. We got the phone call at 7am that he was imminently being moved. We frantically got to Providence to ensure everything was set for his departure from there and his move to UCLA for his Duodenal Atresia surgery. It was frantic, it was fast, but when a spot opens up, you take it. Hudson got to fly in a helicopter off to UCLA, which is not something most people can say in their lifetime, that they flew in a helicopter. Our first few days at UCLA were great and we did learn some new things about our growing baby boy. We learned that he is very charming and very cute, not just to us. Every nurse that walked by his bay area made sure to comment to us about how stinking cute he is.

Clearly he had already won over his nursing staff and while he is cute and charming he likes to be on the move like his parents. 

All the movement can agitate his recovery and weight gain process so he was wrapped and swaddled up in a blanket as a little baby burrito. Being the amazingly talented boy that he is, he broke out of every single swaddle, no nurse could contain him in swaddles, except for Michelle. Michelle, one of his primary night nurses, was the only nurse who could keep him in a swaddle that was tight enough to keep him in, but not too tight to be uncomfortable for him. 

UCLA was nothing short of amazing for him. He gained weight, he was extubated, but they also have so many additional supports for families. We joined several activities, Yoga, group therapy groups, and got to participate in photoshoots for infants in the NICU. 

These little bright spots definitely made it considerably easier to take the breaks we needed while he was napping and stay close by. Everything at UCLA was considered for both him and us as parents as to what works for his recovery and how to get him to that point. There was so much to keep track of, eye doctors, pulmonary doctors, NICU/pediatrics, gastrointestinal specialists, ENT, surgeons, we were balancing each of his visits, their information, and what next steps needed to be taken. We were fully invested in his time in California and what those next steps were going to look like. All the while, I was going to have to return to Maryland for work. The option to be away was running out and I was going to have to return to work in-person within the month. This would leave Page to balance everything on her own and me without seeing my son or there to make decisions for his medical care. Needless to say, this stress weighed very heavily on my mind as we progressed closer to the end of summer. Thankfully, I was able to rationalize taking things day by day and focusing on what was in front of me directly, the next day with Hudson, as opposed to what was a few steps down the line, outside of my control. I just wanted to absorb as much time with him as possible since I was going to be far away and out of his daily routine. I’d give anything to see my son every day and there was no price too high and no demand I wouldn’t meet to make that happen. He was rapidly approaching his weight for his Duodenal Atresia surgery and time was running short for me to be present. Some tough decisions on my end were coming to a head. We had our meeting with the surgery team and from that meeting I would be deciding when I had to return home to make sure I was there for his procedure, but we still had money coming in since bills don’t stop just because someone is in the hospital. As I said earlier, the flow of time waits for no one, nothing stops just because your own world does.

Hudson got to experience his first earthquake which was a 4.6, so a little one, but still something new for him. He was barely bothered by the earthquake, but still not something we typically see on our coast. Speaking of shake-ups, our meeting with the surgery team went well. We had a whole plan mapped out in our head about timelines and how we were going to make things work for me to visit and when his surgery would be. The surgery team completely threw us for a loop when at the outset of the meeting they asked if we wanted to return home. While the idea had always been there in our minds, it never seemed like a realistic avenue.

His surgery team at UCLA determined that while he was successful in his growth, development, and healing, the surgery should take place where he will live so that the doctors who are involved, can provide him care long term and understand firsthand how his internal system is working. A week later we took a medical flight from UCLA to Hopkins in Maryland. So not only did Hudson get to fly in a helicopter, he got to fly on a private medical charter. Regardless we were home and I was able to see Hudson every day, we were back home with, as Page calls it, our village. We had a mini-village in California, which without, we would’ve struggled greatly, but being back in our home was substantial for us. Our supports that we had at Providence and UCLA made things much easier on us and made us feel like they genuinely had his best interest in mind. Dr. Shabaz, RT Cameron, Nurse Michelle, Nurse Danielle, just to name a few of the amazing people that made a difference for us and Hudson.