McDonald Twins and Family
My husband, Christian, my 2 year old son, Aza and I were living a simple life. When I found out I was pregnant in March 2015, we were elated. At 17 weeks pregnant, I had a routine ultrasound where we found out we were having twins. We were sent home, in shock, but so excited. Our biggest worry was that we would need to buy a van. We had about an hour of daydreaming before I was called back to have a repeat ultrasound done. Every pregnant mother's nightmare. It was on that day, in that dark room, that our whole life changed. I was informed that I was pregnant with craniopagus twins, which in normal language means twins who are joined at the head. I was given the option on many occasions to abort my precious babies. I kindly declined. I had heard their heart beats...they spent their life listening to mine. It was my job as their mother to give them life and I decided that I would give everything up, if need be, to do so. Miracles happen...and there is one (really, two :)) unfolding before our very eyes.
Here is our story...
I cried for 2 hours after I found out. My mind was flooded with questions, with doubts, with fears, but then, with hope. I began researching and called in our troops (our amazing family that keeps everything going even when things seem impossible) and I set my mind on things above. In researching, I found a surgeon in New York that had separated twins like mine before ( I now know he's done this 17 times). I stopped crying tears of fear that day and never looked back. (With one exception, I sobbed when I went through my son's closet and realized all his shirts went over his head...sometimes it's the little things that pull at your heart strings.)
I went into labor at 32 weeks gestation on 9/9/15. An emergency c-section was performed and the boys were brought into this world at 11:11 pm. (Notice the doubles...) They are some of the only sets of twins in the worldborn at exactly the same time. The boys were immediately taken from me and put into the NICU at RUSH in Chicago. We had many names picked out but it was ultimately up to my husband to have the final choice. As they stitched me up, he went in to see them and came back with their names.
Jadon (jay-den) which means God has heard. Anias (A-nye-us) which means God has answered. We gave our worries to God that day.
Anias, above, was intubated for about 3 days, before being quickly weaned to room air. Jadon, below, was on CPAP for a while.
One baby weighed around 3lbs while the other was about 4lbs. They were so tiny. So. Perfect.
Everything seemed to be going well in those first few weeks. Anias was on room air with an OG tube for feedings. Jadon was on oxygen and had an OG for feedings. He had some bouts of blood in his belly but was our little trooper and healed up quickly.
The prospects of going home seemed hopeful. We started talking about car beds and transportation options. We were ecstatic. You see, we live 70 miles from RUSH. The drive, one way, can take anywhere from 1.5 hours to 3 hours depending on traffic. Our days were a blur. Christian would get up at 3 am for work, me and Aza up by 5:30. Aza to (insert family member's name here)'s house by 9 or 10 am, to the hospital by 12. Christian pick up Aza at 4 or 5. Me home by 8 to put Aza to bed. Repeat. It was strenuous and poor little Aza was missing mommy and daddy. Prior to this I had quit my job as a pediatric physical therapist to be with Aza as much as possible. No one else had ever even put him to bed before except for a handful of times. This was rocking his world too.
Aza was the stars in my sky...one of the lights of my life. And I missed him too. I felt guilty everywhere I was, either missing him or missing the babies.
The biggest issues the babies had at this time was maintaining body temperature, eating, and jaundice. The went under the bili lights for days.
And then one day, everything went downhill. Anias started having trouble breathing. Because of the way he was positioned in my belly, his chin was against his chest and his jaw couldn't grow. His airway was also constricted. As he required more oxygen for day to day life, his breathing got worse and worse, until eventually he was back on oxygen. Even on oxygen, his vitals would tank, and multiple times a day he would turn blue and pass out from lack of oxygen in his blood. It was beyond awful to witness.
Anias on his worst day. I thought we might lose him this day. Anias is also the dominant twin, working hard for both of them because the majority of the blood vessel that is shared between them is his.
All the while, Jadon is doing perfectly and ready to come home. What a patient, sweet little boy.
Now it's been almost 4 grueling months and we are still in the same routine. Anias is growing and doing much better. Still on oxygen and just starting to eat by mouth. He's been such a fighter.
Since the day they were born, these boys have had every test under the sun. They've had blood draws, blood transfusions, IVs, echocardiograms, kidney scans, ultrasounds of their heads, a CT scan, an MRI, multiple xrays. Anias has had swallow studies, scopes of his airways, multiple types of oxygen support. The list goes on and on. The MRI results show that the boys share a small section of brain tissue (about 1.5cm), the dura around the brain, and the middle section of their superior sagittal sinus (the large vein that runs along the top of the brain). They've been poked and prodded more than I could have ever imagined, and the worst part is that I can't even hold them when they cry. Instead, I press my cheek against theirs and whisper in their ears that it's going to be ok. I hold their hands and rub their backs. I crawl up in their hospital crib and lay with them. Occasionally, we take them for wagon rides around the NICU.
Jadon loves wagon rides.
And this is just chapter 1. In the next year, the boys will undergo a series of surgeries to slowly reroute the blood flow between their brains. This will hopefully provide each boy with adequate blood flow to each separate brain. They will do a craniotomy for each step and clamp off various veins to control the blood flow to each brain. Then they will insert tissue expanders under the boys scalps and slowly fill them with saline to stretch their skin so they have enough to cover the area after separation. Then, the separation and reconstruction surgery takes place.
So here are the statistics. Craniopagus twins occur in 1 in every ten million live births. There are four million births in the US every year. So far in all of my research I have yet to find a set of twins like mine born in the United States in the last 20 years. There is a surgeon in New York who travels the world to separate twins like mine. He has consulted with 18 pairs of twins and operated on many of them. Besides him there is really no one with experience in this type surgery. We will be going to New York in January to consult with him and his team at Montefiore Medical Center.
My pictures will always depict my boys as separate because that's what they are to me. Their faces are so beautiful. I would hate for people to get caught up in the bridge between them.
Until they are separated, my boys will never sit up. I won't be able to put them up on my shoulder and hold them. They will struggle with eating. I can't just swoop them up and snuggle them. All the things you take for granted with a typical baby, I yearn for.
When this all began, back in that dark ultrasound room, I knew we were in for a battle, but I also knew that with God anything is possible. Our faith continues to grow as we watch God work out blessing after blessing in our life. We are eternally grateful for all of you who have donated, sent messages, sent cards, and prayers. Without you, we'd be sunk. Thank you for renewing our faith in the goodness of man. With much love,
Of course, when things go south, they go way south. Aza developed croup a few days ago. While I was spending most of my time with Anias, I now had to switch my attention back to Aza, who was spiking high fevers and needing frequent trips outside to catch his breath. As I sit here and type, I have to admit, I feel a little worn out. Two kids in two different hospitals. A sick three year old at home. If I had a super power it would be to be able to be in at least 5 places at once. What I'm learning is how to be fully in the moment of wherever I am, as best as I can.
And so as we negotiate through this side trip of our journey, we do our best to just keep smiling. To not lose hope. To not lose faith. To not fear. To keep pushing forward to the day that we will all be together. I yearn for that day and sometimes I wonder if it will ever come. Until then...
Thank you for your continued support...
All our love...
I figured that I should update for all of you who are not able to see my frequent Facebook posts, but who care so much about the status of our family as a whole. February was seeming like a great month. The boys developed colds, but hey, we will take a cold any day...it almost makes us feel normal. Anias' wounds were practically healing, Jadon was flying through therapy, Aza was healthy and starting to talk more. That feels like forever ago.
I'll never forget the day that I decided it was time to let down my guard. It was February 14, my birthday, and Christian wanted to take me ice skating. I agreed but it had to be after I spent the day with the boys. I am very cautious about doing things outside of the hospital because I feel like every time I do, something bad happens. The streak continues. After a wonderful date night with my husband (an absolute luxury that has not happened in many, many months), I returned to the boys the next morning with a new pep in my step. I felt like everything was looking up. And then I looked down. There was little Jadon, lying in his crib, in a puddle of yellow drainage. Yup, that's right, a puddle of pus. Guilt sank all the way into the deepest center of my being. I was gone for 12 hours. I had been concerned about a few spots on his head that were losing hair and was worried that they would eventually open up. One of the spots developed a little pin hole in it overnight and a steady stream of yellow was pouring out of it. That was when our non-reality "stability bubble" popped. Jadon was admitted to Montefiore that day, had a CT done and lots of testing. It appears that he has a cyst that has developed on the brain where the surgeon cut to separate the boys' brains. The cyst is growing with fluid and pushing up on the skull they reconstructed, which is not fully healed yet. In fact, some of his bone is resorbing and now there is talk of Jadon also needing some reconstruction later--like Anias is going to need. So that was a stab in the heart. This time when Jadon was admitted to Montefiore, we were on the general floor and not in the PICU, which was like being in the twilight zone. We had a 15 year old boy as our roommate and Jadon was not hooked up to a monitor. Needless to say I only left to shower and grab a quick snack. He was hospitalized for 3 days and we were discharged with information but no real answers. Still today, his head is leaking but there is nothing that is being done at this point. I stare at his head and fixate on the day to day changes, wondering what the future holds. Jadon is no worse for wear, though, and is a bundle of joy and energy. In the last month, he has continued to get stronger and stronger and today when I put him on his belly, he immediately flipped over to his back. I sat down to feed him the other day and asked him if he was ready for bites, to which he replied "YEAAAHHH." He's always smiling, always happy. Except for the last week...he's acting a little depressed this week because Anias is now admitted at Montefiore for the same exact issue, only to a much grander degree.
So Jadon returned and I was a little traumatized. Could it really be that I'm not allowed to leave them? I juggled the question for days. But when Christian and Aza decided to take a trip down to Georgia so that Aza could see his cousins while they were on spring break, I forced the thought to leave. While they were gone, I stayed with the boys every hour they were awake, but at night I went home and allowed myself to sit. Wow it felt great! I began to get comfortable again. It had been 2 weeks since Jadon's admission. While Jadon was in the hospital, I was asked to attend an event at the State Capitol; they were issuing a proclamation to honor the team that separated the boys and they wanted me to attend. I said no because of my fear of leaving the boys, but as it got closer to the event, I changed my mind. It was an awesome day of celebration and I was so proud of the whole team at Montefiore as they stood to accept this honor in front of the Senate. On the bus ride home, I got the call. The streak continued...Anias was spiking a high fever. Something was off.
Earlier in the week, he had a desaturation episode where his oxygen levels tanked to 17 in a matter of seconds. Rapid response was called. He was ok after being "bagged" but it was terrifying. These episodes are seizures that typically come when he has an infection/fevers. When I got to Anias after that day away with the team, he was screaming in his bed. He was hot, his wound was bigger and there was a distinct line of blisters on his incision. I told the nurse he needs to be admitted today. So, he was shipped off to Montefiore last Thursday, and there he remains. His CT also showed a cyst like Jadon's but larger in size. On the first day of admission, he had a CT and came back to the room to have 60 cc of fluid tapped from him head. He started spiking a fever. He began throwing up uncontrollably. Then he went blue in my arms. I screamed for a nurse and they bagged him so that his oxygen would return after dropping to 27. He fell asleep and then was awoken for the doctors to attempt IV placement. He threw up through that and I suggested they wait a day. It was all too much. I had just held my non-breathing baby, blue as the sky, while they resuscitated him...he needed a break and so did I. The area of blisters on his head opened up in to a huge, gaping hole. He has a Pseudomonas and staph infection that is being treated with antibiotics. He is still admitted in the PICU because they are attempting to find a way to wrap his head to prevent the cyst from expanding any more and causing his scars to open. He will no longer be wearing a helmet for now. The whole ordeal has grounded us. We sadly came to the realization that stability is on hold. That even though things seem ok, these boys will be in and out of the hospital for a while, and that is just how it's going to be. But...as always...little Anias is SO happy. He is like the prince of the PICU. He has visitor upon visitor and he causes each one to swoon over his infectious smile. He won't let me hold his hands, though. That's the worst...because of so many IV attempts, he doesn't trust you when you reach for his hands or feet. But he cackle-laughs when you kiss his belly and his rolls over to snuggle into my arms and he just so precious.
Jadon is rolling onto his belly. He can roll off onto his back also, but I think he enjoys crying out and watching as I rush to save him from unplanned tummy time. He has me, and everyone in his presence, wrapped around his little finger. He has big opinions for such a little boy. He lets you know that he wants "this" book not "that" book. He cries if I hand him over to a nurse and walk away, then laughs out loud when he gets his way as I take him back. Trouble...big trouble.
One of the most fascinating, yet absolutely boring things that I did this week was hold Jadon on my hip like a toddler while I pushed Anias in the stroller. So silly, right? But up until this point I've had to carry Jadon like a newborn with his head supported on my chest. It's the little things.
Anias is as sweet as ever. Every single day I watch him get stronger and stronger. He is really trying to use his right arm more and even grabs his right arm with his left hand to help his right arm function. He's so smart and determined. Last week, I realized that I sat him up in the bath and didn't have to support his head. I'm not sure who was more proud, me or him! He can roll side to side to get toys or a hand full of his brother's face. He laughs--oh man he belly laughs at me when I kiss his neck and cheeks. While 7 o'clock is Jadon's bedtime, it seems like that is Anias' time for fun. He squeals with delight as he grabs his feet and rolls around his crib. He frantically kicks his legs and flails his arms as if he's running. My whole body beams as I watch him become more and more like his "old self." I was so worried I was going to lose him...now I look at him and just thank God over and over for bringing the Anias I knew back to me. He's still working on eating and has a long way to go overall, but he's ready for the challenge and he's got his very own cheerleader standing at his bedside celebrating every accomplishment, great and small. I just need some pom poms.
We are looking into getting Aza an evaluation for his speech delay and he may qualify to attend a part time school at Blythedale which would be so incredibly convenient for all of us. He misses his brothers because he still can't visit them. Flu season is the longest season...I long for all of us to be together again. It's been over 6 weeks now. I guess once you get a taste for something, you want it all the time. I long to realize the dream of us all standing together at home under one roof. Patience is a virtue that I am blessed to try to grow in every day.
We believe that hospital life will not be ending any time soon. When I asked the doctor how long he thought the boys might be here, he commented that he hopes they'll be here a long time...maybe a year or longer. A year....oh boy just typing that hurts me all the way to my core. When the boys would come home in between surgeries it was like a vacation. We weren't on a schedule. We could stay home all day if we wanted. But hospital life is so different...the guilt of not being with them is pretty debilitating...in order to care for them in the way they deserve, it's 7 days a week...no weekends to just relax. My mom commented once when she came to visit that I never get to just sit home and watch a movie. No, I don't. But hey...just the trade-off for having beautiful, miracle children.
Christian and I are dealing with the reality that the Montefiore dream-bubble has officially popped. We had no idea how amazing it was to have meals provided if we wanted them. How convenient it was for me to walk or take the bus if need be. Having the option to walk down the street and have an abundance of food options under $5. Or just the ability to go for a walk. Blythedale is beautiful and most definitely one of a kind. The people here are incredible and the therapists genuinely love our boys. It's perfect for the boys and we are thrilled about the progress they are making...it's just a whole new world for a caregiver like me.
Now that the boys are 30 minutes north of us, we are debating leaving the Bronx and heading upstate. Cost of living here is pretty sobering for a country girl from the cornfields of Illinois. Our dream is to find a fixer-upper for Christian to work on while I attend to the boys here. We are seeing that this is going to be very difficult in our situation but who knows?! What's life without big dreams? Big dreams are what got us here in the first place...and we are blessed beyond measure. Hope you all are having a wonderful week!!
Thank you for continuing to show these boys what it means to have a good ❤️.
All our love,
My eyes well up with tears every single time I scroll through the names of all of you who have donated to our babies. Your support is absolutely inspiring to us. We never expected anything from anyone...so to see all these names...names from the past and present...names that we don't even know...is just too much to take in. Thank you all so much. When this is all over and the boys can look at each other in the eyes for the first time, it will be because of all of you.
I woke up at 2:15 last night and felt led to pray for your little boys, knowing they were probably still in surgery. Thank you for sharing your heart and faith with CNN, as that is how I found your story. I love how your momma's heart just shines through. Prayers continue for your boys today and I look forward to seeing how God will use your boys and your whole family for His glory.
I saw the story on CNN today and I immediately began searching for news/updates of how the surgery was going. I will pray for your sons and your family. Today was the very first time I've ever donated to any fundraising campaign as your story, your sweet boys story, captured my whole heart. May you all be blessed with much love, happiness, peace & healing. God bless you all!
Your faith throughout this is such a testament to God's love and faithfulness to all of us in hard times. My twin girls (who just turned 3 and are doing great) were mono-mono twins and my heart goes out to you and your precious boys. God is the God of miracles, and may He give you strength and bless you abundantly.
I have mono/di twins, one of which was born 1lb3oz at 31 weeks - smallest 31 weeker to have survived in the country from what I know. Throughout my pregnancy we were strongly advised to "selectively reduce" the little one to save the big from death/brain damage. We were repeatedly told the little wouldn't survive, even after he was born. My little one spent 4 months in the hospital and has endured countless IV slips, central line failures, transfusions, surgeries, illnesses, etc. By the grace of God they both turned 1 last month and are doing great. While I can't possibly understand exactly what youre going through because our situations are very different, I do understand some element of terror and agony and joy surrounding these medically conplex babes, and wanted to give you a virtual hug. **May God's peace be with you throughout*
I read that one of your sweet boys isn't moving one of his sides yet. My cousin's 2 y/o had brain surgery that the drs told us could cause paralysis on his left side but they were hopeful his mobility could come back. Well he did end up not being able to move his left side after the operation. The surgery was 16 months ago. He now has complete restored movement in that side. You would never know he was ever paralyzed. I pray and am very optimistic that your baby will have the same outcome. It's amazing how young children bounce back from operations in a way adults can't. Prayers to you all for strength and for a speedy recovery for those beautiful boys.
All of us are blessed to have an impact on those around us and some of us are blessed to have a much wider impact. Thank you for your impact on those of us watching and praying with you and for your faith. Praying for your twins, for your family, for the surgeons, doctors, nurses and support staff working right now. Praying that The Surgeon would hold and guide your surgeon. For You created my inmost being; You knit me together in my mother’s womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.
Just read CNN's writeup. As a father of 3 with another one on the way - I can't imagine what you've gone through. And yet I'm crying as I read because there's the common bond we all share that makes us all one, all understand. "From two people falling in love" that circle just keeps growing.
I have been following along. I cannot donate, much as I wish. But I was so nervous yesterday, I had to tell myself... remember this family thinks nothing is ever impossible. And all of a sudden, I could feel that the everything would work out. Jadon and Anias both have beautiful names and I, too, believe in them, in their parents and their big brother. You'll always have my support. Be blessed with your gorgeous boys.
I saw something about your boys' surgery last night on a news app I have. I don't know when your children came out of surgery, but I joined my prayers late into the night for you, your family and specifically that the Lord would guide the doctor's hands, give him wisdom and keep his attention and instincts sharp during the long hours of intense labor. I'm sorry I don't have money to donate. But I am most definitely praying for you, your family and those precious beautiful Gifts!
nicole and christian, i have a feeling you believe in heavenly signs so i have to tell you when i saw the time of when the boys were born, i knew they would by ok. my daughter kept seeing 11.11 all the time and wondered what it meant, if anything. to her surprise it means an angel is watching over you. i truly believe this is true with the boys too. i am patiently waiting for an update along with everyone else. i am so excited to see them separated and doing good. God bless your entire family.
Nicole and Christian, We will keep the boys in prayer thtoughout the surgery on Monday. We pray also for the skillful hands of the surgeons and the medical staff. We also pray for both of you as you wait for the positive outcome of the surgery. May you feel God's peace and comfort throughout the day and beyond. Know He is with you always. Eileen and Bill Hart
Can you please post an update? All of us are wondering about them, thinking about them all the time, and praying. Even s updates would be grateful. Like they made it through the night with God by their side, they are now on day two after surgery and so far God is good, they are starting day three and God is amazing, etc. We are all praying and care so much for their health and well-being. They are such precious angels.