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,
The drive felt infinitely longer than normal today. My mind swirled with all the possibilities. Anias has obstructive sleep apnea. His airway collapses when he relaxes in a deep sleep. So, he uses a bipap machine during naps and at night to push air through his airway and keep it open. Lucky us, this is completely unrelated to the fact that he was conjoined to his brother. Maybe he should play the lottery... This machine works great when Anias is well. But this cold he is harboring is relentless...I think it's been over 2 months now without an end in sight. The mucous in his nose blocks the air from the bipap machine. So when his nose is really bad, he doesn't get the pressure he needs from the machine, his airway collapses, and oxygen cannot pass through. He basically looks like a suffocating fish out of water. It's absolutely heartbreaking. About once a week, he spikes a fever, starts throwing up because of all of his secretions, and the bipap is not able to function properly. I watch him as he tries to get air into his lungs and sleep. His whole chest pulls in, trying desperately to get any oxygen into his lungs. It must be the worst kind of torture to not be able to breathe or sleep. My insides turn with the "T' word (tracheostomy). What a tracheostomy would do is allow Anias to bypass his upper airway and breathe through a hole cut into his throat. All my worst nightmares in one sentence. I know it seems so silly, considering what we've been through, but the trach has been the only issue we have stamped our disapproval on. It's the only thing we have tried to control in this whole situation. We have said "no" to the trach on multiple occasions for good reasons. We kept believing that as Anias grew (and after being separated from his brother), his obstructive breathing would improve, and he would not need the tracheostomy. Which would be true...if he weren't sick...All.the.time... Talk about being humbled...people fought very hard with us at Montefiore to keep Anias from getting trached last year. I just feel so awful that we may have to do it now anyway.
So now I stare at him as he struggles to breathe and wonder what we are going to do. He's going to be admitted to the PICU at Montefiore tomorrow and the tests will begin. Blood work. Sleep study. ENT consult. Data will be gathered, and in the end, the pros and cons will be weighed. We will either return to Blythedale with the bipap or with a trach. I hang on every little sound he makes today, knowing that in the near future those little sounds may be replaced with silence.
So... home is now postponed...Every one asks if I've set up their room yet. My response is always, "No, I'll do it the week before I KNOW they will actually be in it." This is why. I could not bare to look at that room, all set up, with no babies in it.
If anyone out there has any advice on trachs I'd love to hear it. Send me a message on facebook or an email. I'd love to hear your stories, whether it be your experience with your child, loved one, friend or yourself. The more information the better. The things that weigh heaviest on my mind are Anias losing his voice, not being able to eat, and the trach having to stay in permanently.
The most heart breaking part is that he is totally fine when he is awake. So essentially, we would be placing a trach to function only when he sleeps. Oh man...parenting is hard in general, but making life changing decisions for your child seems impossible sometimes.
On the total other end of the spectrum, Jadon is flying through his milestones. He is a full-blown toddler and ready to come home in terms of his medical needs. He obviously still needs intense therapies but his wounds are healed. (Thank you God). His personality is so BIG. My favorite thing he does right now is use his little index finger to point which direction he wants to go. And when he's sitting next to Aza and he leans over and tackles him to the floor. He calls Aza "bobo". They are the best of friends. Their laughs fill the room. If you haven't seen Jadon riding his tricycle yet on my Facebook page, check him out. He's pretty amazing. Jadon obviously gets the least amount of mommy time when Anias is transferred to the PICU, which is earth shattering for him now that he is a 100% momma's boy and screams bloody murder every time I leave his vision. He spends most of his non-therapy time hoisted up on my shoulder, ordering me around to where he wants to go with that little finger of his. He's something else.
So, in a nut shell...we could all use some prayers.
I just want to quickly add that we appreciate you all much more than we can ever explain. You are the light on the path. This is a huge outlet for me to get on here and type through the difficult times. Thank you so much for all of your continued support.
All our love,
I have nothing for the boys at home. Of course we never had a baby shower before they were born and they just slept in a queen bed when they were conjoined. This is like bringing twins home for the first time after birth. I'm anxious and excited and scared about the transition but mostly I'm elated. And my mind is already "nesting" just like when I was pregnant but this time I actually get to follow through! We need cribs and high chairs and everything that come with having babies at home! I need to set up a room for them! I need a pediatrician! I can't even believe it.
Home. For so long, my heart has been split between 2 "homes"...soon, home will be where all of our hearts are. God's timing is the best timing.
Yesterday was such a blessing. A ray of sunshine in our storm, which brought forth the roses to my vision. For the last 8 months the people at CNN have been in and out of our life, documenting the boys' separation and recovery with great compassion. Yesterday, we met again (for the last time) to finish filming the hour-long documentary that will be featuring the boys' battle for life, from birth up until the present. I'm excited to announce that this documentary will air on CNN next Friday, June 23 at 10 pm Eastern Time (God willing). I cannot explain how proud I am of the work these people have put into this production and the level of trust I have in their ability to tell the boys' story with dignity and grace. The boys' progress will be shown from start to finish and although I could put it into words on here, I'd never do it justice in comparison to their compilation of our life in video form. I hope that you are all able to tune in next week, as I know by your selfless donations that your compassion for the boys runs deep. I pray that the candidness in which we displayed our life in this way is an encouragement to anyone who may be facing a trial, both small and great.
The cursor is flashing in front of me and I’m not sure where to start. To be honest, I’ve been avoiding writing lately because of the state of my heart. But when I was confronted with the 3000 unread messages in my Facebook account a few days ago, I realized that I needed to crawl out of my hole and do the good service of giving all of you wonderful people an update on the boys.
Usually when I sit down to write, my goal is to provide information on the boys’ status and to encourage those who may need a boost. Frankly, the last few months have built a wall of discouragement around me, trial by trial, brick by brick. I haven’t had the heart to update because I knew I would not be able to break down the wall and provide encouragement through my discouragement. Today I realized that it’s not all roses and rainbows, and sometimes you can encourage by sharing the dark side, and so, that’s what I’m going to do today.
I’ll start by saying this: Discouragement does not correlate with ingratitude. Every single day I thank God for carrying us through our trial, for healing through the impossible, for providing every last need. I am in awe of His Goodness, His Mercy, His Love. Our gratitude is inexpressible…but that does not mean that we are not susceptible to weariness. The trick that we are learning is to find light in the darkness...to choose happiness over sadness…to continue moving forward, even if you are knee deep in quick sand and you are clawing at the ground to keep from sinking.
So here we go…
Jadon: Jadon’s wounds have continued to progress in a devastating way. A month or so ago, he got a new helmet and he has been wearing it 23 hours a day. That was an absolute blessing because prior to that, I was staring at his wounds for hours a day and literally watching them get worse. Now I only see the worsening once a day and at least in between I can pretend that his head doesn’t look like swiss cheese. What started in January as a spot of hair loss and a small weeping wound has morphed into 3 large gaping holes with evident pseudomonas infection. He was on antibiotics but has finished his course. The infection is still present, however. I noticed about 4 weeks ago that one of the areas had a small white hard object exposed. I was told it was just a scab. On Saturday when I was changing his wound dressing, I noticed a hard, white object coming out of the hole in his scalp. With tweezers, I removed the tooth-like object and crumbled it in my hand. I was for sure it was bone. When we went to see Dr. Tepper yesterday, I showed him three more areas I was concerned about. He ended up removing two large pieces of this white material while I anchored Jadon down in my arms. Nothing like restraining your screaming child so the doctor can remove foreign bodies coming out of his head. It turns out that the dissolvable plates holding Jadon’s transplanted bone are being rejected by his body, and they are coming out through his scalp. I was praying for answer…and I’m glad I have one…but sometimes the answer just plain hurts. We are going to see Dr. Goodrich this week and are following up with Dr. Tepper next week. So far, there is no new plan. I’m praying the bone does not have to be removed. These wounds have been a dark cloud over my head for months. Some days I would go home and lie flat on the floor, my face soaking in my puddle of tears, and beg God for the ability to pray. I’m a wound care person (I treated wounds for the first 2 years of my job) but there’s just something about watching your baby’s head upon up into festering wounds that takes the wind right out of your sails. Ok…that’s the dark stuff, time to shift to the light…
Jadon could care less about his wounds. I am pretty sure he can’t even feel them, considering that the skin that covers the top of his head is actually part of Anias’ scalp. His physical recovery is astounding. He can roll every-which-way to get toys that he desperately wants. He can briefly sit on his own. He is standing without needing leg braces anymore (with full support of his body) and is trying to pull his knees under him when he’s on his belly to attempt to crawl. He even tried to pull up to sitting today. He is on the move, all the time. Jadon’s personality is BIG. He is rambunctious yet charming. All boy with a hint of sweet. I am basically his human gymnasium. I have been able to take the boys outside on stroller rides on nice days. I love watching him look at the leaves on the trees as they move with the wind. He beams when the wind hits his face. There’s a fire in him that is contagious. He is determined and independent and just plain happy. He says “mom mom mom” when he wants me to pick him up. He says “uh oh” when things fall on the floor. I know I say this all the time…but thank God for his smile…without it I’m just not sure I could do this.
Anias: In the midst of the wound turmoil, Anias has had his own issues. Last time I wrote, one month ago, Anias was admitted to the PICU, Aza had croup and Jadon was in Blythedale. I am so grateful to say that Anias’ wounds have fully healed and that he has been back with Jadon for about a month. In the last month however, our family has been struck by sickness. About 4 weeks ago, after Anias’ return from the PICU, both Anias and Jadon contracted awful colds. Colds sound like no big deal, but for Anias, it can be devastating. With that bout of cold, Anias stopped breathing on multiple occasions. One time his oxygen went down to 17. For about a week, I made it my sole responsibility to try and predict these instances by watching his heart rate and fever curve and keeping his nose suctioned, and yet, I still held my blue, breathless baby on more occasions than I’d like to remember. After about 2 weeks, the colds finally subsided and I disinfected everything I owned, attempting to prevent another outbreak. To tie in everything I guess I should state that at this time, Aza had just gotten over croup and the boys were sick. Within the week of the boys’ recovery, Aza started spiking 102 fevers.
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!
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*
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 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.