I started writing all about World Down Syndrome Day (WDSD) and how my family and I have been able to celebrate this day the last four years. March 21st wasn’t a day we even knew to celebrate before Hudson’s diagnosis. Now we have this annual beautiful day and it has the most wonderful fun meaning, 3-21, because a baby with Down syndrome is born with a third copy of the 21st chromosome. After attending the March For Life in DC and screening the pro-life movie about adoption, “Lifemark”, I decided to scrap my original story and share something deeper with you about how I got to my first WDSD still pregnant and how I will celebrate this day for the rest of my life WITH Hudson:
At 29 weeks pregnant and already having a left bundle branch block heart defect of my own, my doctor suggested an echocardiogram for me. We were living in Colorado and the altitude was much different than my other two pregnancies at sea level. As with everything, I did whatever was suggested to have a healthy pregnancy and, ultimately, a healthy baby. Remember, it was at a little over 12 weeks that Hudson was determined to have Down syndrome and a hole in his little heart; so my heart health was a priority for his safe arrival.
I remember all of these events like they were yesterday. I went for my ECHO and it took forever. I was twisting and turning and the look on the man’s face was alarming. He didn’t say anything was wrong, but I could tell. I laid super still and let him concentrate. CJ, my husband, couldn’t understand what was taking so long and called me over and over. My phone was in a locker and time was becoming a blur. I finally was released to go home, and I took that as a good sign?
The next day, I got a call from both my OBGYN and Cardiologist. They had concerns and wanted me to come in the following day. I was getting shorter and shorter on my breathing and super lightheaded. My normal response of “I’m fine” wasn’t cutting it for them. I was 30 weeks pregnant and being admitted for immediate delivery. I was diagnosed with Peripartum Cardiomyopathy. This meant that my heart was failing, my ejection fraction was compromised and Hudson could be in danger.
This was not my plan! This couldn’t be happening. It was the most devastating news. My hospital room was a revolving door of bad news after bad news. Not one person entering my room believed it was possible for me to remain pregnant; I was begging all who would listen to me, even with my most shallow of breaths. Then the NICU brought me papers on what to expect after delivery. The information was numbing. It was all so surreal. Being born at 30 weeks was going to be much harder on my baby, his lungs, his overall health, than getting to 32 weeks…. I felt like I had failed him. I failed my entire family. Please let me get to 32 weeks! Please! Please! Please! I will do anything you ask. I can’t fail this baby boy. He’s fought so hard already, I needed to fight for him.
For keeping some of this private, I won’t say names. One doctor sat down and cried with me. She knew I was hurting and that this wasn’t what I wanted. She prayed with me. She had me call her by her first name. We connected. She let me explain how Hudson already had so much against him at birth, and that it was my job to do whatever I could to help him, not add more stress to him. She was the angel I needed. This doctor believed in me and she took my wishes to the team. Half agreed to let me decide how far I could go and the other half said no. It basically came down to who was working. I could only stay pregnant if the doctor on call that day believed in me. My breathing, my ECHO, my failing heart all said no to staying pregnant. My spirit, my will, my determination said I could go way farther… just give me the chance.
The head of the department listened to the doctor who cried and prayed with me. She, too, came in and sat in the same chair that I was given a “little” hope in, and a little was way better than none. She let me share my same desires and fears about delivering Hudson so early with her. This was the doctor who gave me “options” at my 12 week appointment when seeing Hudson’s soft markers of Down syndrome; so she already knew my heart and my love for this baby I was carrying. She couldn’t promise that my wishes would be met at this hospital, so she moved me. This was the chance I needed.
Within an hour, my room was filled with what looked like the new team of female Ghostbusters. I’m serious. The women all in astronaut like suits came in to save the day for me and Huddy. They were my ambulance escort team from Colorado Springs to Denver. Y’all, I cried happy tears and scared tears the entire way. I didn’t know what to expect. Was I moving farther away from my family to still deliver him? Was I asking for the impossible? Was this God answering my prayers? What would happen now?
After we arrived, the new team came in to talk about what we needed to do. The first thing was to repeat bloodwork, get an EKG and get everyone on the Cardiac team and OBGYN team all on the same page. It was suggested that we needed a heart cath, a strong suggestion in order to keep me pregnant. My husband wasn’t all in like I was. He is medical and he questioned the safety for us. I was willing to do anything that would keep Hudson in my belly. CJ agreed to my reasoning and I was scheduled for the next day.
This is so clear to me. The next morning, my room filled with so many new faces. There was so much equipment needed to travel with us, not only support my needs, but Hudson’s, too. So much that we could not all fit on the elevator. So my nurse stayed with me and we met the others on the floor. And piece by piece, we made it off the elevator and into the room for our (mine and Huddy’s) procedure. This was the make or break. This would decide the next steps.
Music was playing. People were chatting and laughing. It was freezing and my teeth were chattering. I was told that I would stay awake by my nurse. The procedure began and while there was no pain, I could feel things and I could see smiles. I felt hands and pressure and I could hear the instrument going in my neck. My heart was beating on the monitor and so was Hudson’s. Then the room changed. Panic was on many faces, smiles were gone. My heart wasn’t beating near as fast, I saw the monitor and I was beating at thirteen beats per minute. My doctor was yelling at the staff, “turn off the music now and leave this room if you can’t stop talking!”, then my nurse said that I needed to go to sleep now. I can still feel the tear slowly running down my cheek. I knew we were in trouble.
Now, I am asleep and my husband, who feared this exact scenario, was getting this call. “Mika is struggling. The probe hit her heart bundle three times and she is in complete heart block. The team is on its way to deliver Hudson. We are still trying to save Mika.” I am asleep and have no idea that my husband all alone is getting this news. He said he couldn’t breathe, he couldn’t talk and every call he tried to make the words couldn’t come out. My survival was in question and Hudson’s was unknown, too.
I did wake up. I remember the first face I saw, my nurse, who is still today in my life and someone I treasure. But I didn’t know at the time what her job was. I assumed watching me. I assumed Hudson had been born. I assumed that my heart dictated that pregnancy was no longer my wish to remain, but that the doctors had control over this now. I connected eyes with CJ and repeated over and over how sorry I was. He asked what I was sorry for? Making Hudson’s life harder, that wasn’t why I did all of this. He then told me that I was still pregnant. You see, I had a temporary pacemaker in my neck and so many pillow propping me up, I couldn’t see my belly. I was still pregnant! All of that and I still did it. And a MIRACLE occurred even larger than my heart failing and remaining pregnant, Hudson was thriving. My heart working properly with this device gave Hudson his best chance. He went from the 35th percentile to the 67th percentile in the week I was in Cardiac ICU. The pacemaker was pumping my heart better than I was and it made a huge difference for my baby. We made it.
Three weeks total was spent in the hospital and I went home STILL PREGNANT. Of course, I had to wear monitors and check in all the time, but we went all the way to 37 weeks. Funny, it was the fluid in my belly that caused me to deliver then, not my heart. I guess momma built the luxury swimming pool for her brave boy? I spent my first WSDS not only pregnant, but wearing crazy Wonder Woman socks, very appropriately chosen. Ha!
You see, my first World Down Syndrome Day was very different than what would’ve been had I delivered Hudson at 30 weeks. We would have, at best, still been in the NICU with no homecoming in sight… or we wouldn’t have; that would’ve been the worst version of my story. Hudson, even born at 37 weeks, needed open heart surgery. Hudson had blast cells called transient leukemia on day one of life. He had thyroid issues and blood that clotted immediately. He spent 6 weeks of life in the NICU and failed every carseat challenge. The mountain he had to climb at 37 weeks was steep enough, can you imagine him climbing all this and more at 30 weeks?
I share this to tell you that you are as strong as I am. If this wasn’t my story, I would be thinking how strong this person is. This person is me and I am much stronger than I knew I was. How could I be anything else? We forget that we were/are ALL created in His image and our strength is mighty. Hudson is mighty, too. My hero; he can do all things, because with God all things are possible.
March 21st is World Down Syndrome Day. Celebrate the lives that fought so hard to be here. The real life heroes. Celebrate by wearing crazy socks or walking 3.21 miles. You can donate to your local Down syndrome organizations. Wear something blue and yellow. Read a book about Down syndrome. Educate yourself or teach your child about Ds. Find out how your local areas celebrate and join in on the fun. You’ll be EXTRA happy you did.
My first one was big belly dancing in super fun socks, but since then, my WDSD activities have grown way bigger than my belly and with Hudson in my arms or dancing in his own crazy socks. One day, he will be walking his own 3.21 miles… all because one doctor believed in me and my ability to carry Hudson for much longer. It is because of my determination that I get to celebrate WDSD with the EXTRA love of Hudson beside me.
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