Musings of a Marfan Mom

September 10, 2013
by marfmom
1 Comment

Julie’s Birth Story, Part 2

I’m out of town on an unexpected trip. While I’m gone, my friend Julie is kind enough to share with us her birth story. It will be presented in 3 parts. Thanks, Julie! 🙂

The Story of Max
medivac http://marfmom.com
By the time the helicopter people came, there were many medical personnel people swarming my room. Pete kept leaving the room and returning with even redder eyes, my nurse was sobbing and Dr. S even had tears in his eyes.

My veins wouldn’t cooperate and I needed an IV directly in to my artery. It hurt. I just tried to breathe. But they couldn’t find a vein and my doctor finally asked them to please just take me to the hospital already.

I got bad vibes from the woman who would be in charge of taking me in the helicopter. She was cold, she didn’t care. You can tell very quickly about these things when you are sick.

In order to get me in to the helicopter they had to lay me completely flat on a stretcher and push me up in to a very small space. The problem was that the pain was excruciating if I laid on my back. But I had to just handle it until they got me in the plane. God really helped me get through every obstacle with a strange calmness. I had no choice and I knew it. Either just deal with it or have the bomb explode and kill my baby and myself.

The woman sat next to me and said while we couldn’t communicate now, when we were up 500 feet, we could talk through the headphones on my ears. But I never was able to hear her. She told me if my pain got worse to notify her immediately. But it did and I couldn’t. So I just prayed and breathed and meditated and told myself we were almost there.

However, when they finally took me out of the heli, we weren’t at a hospital. An ambulance was waiting for me in a parking lot. I just needed this to be over. I couldn’t believe there was going to be more traveling involved.

While in the ambulance, the woman start edtalking “career” with the other ambulance women. “Oh I worked there too, did you like it?” It occurred to me that we weren’t moving and that the sirens weren’t on.

“Are you going to use the sirens soon?” I said.

The driver then said “Oh. Is this life threatening?”. The cold woman non-chalantly said yeah. I was then told that there was a lot of traffic but they’d try to move along. And that’s when we finally started moving. It blew my mind that I had to be proactive with emergency flight crew. But at least it worked.
Upon entering the hospital I don’t remember much. Except for all of the faces clearly waiting for my arrival, the people looking at me with wonder and horror.

This may sound weird but when they wheeled me in the room and the nurses and attending physicially surrounded me, again trying to find my artery for that annoying IV, I couldn’t help but notice something. Everyone was drop dead gorgeous. I’m talking like the no make-up needed, hair back in a shower cap perfect faces, model features holy shit beautiful gorgeous. Angels surrounding me gorgeous. I now wonder if I was seeing their true beauty and not what they really looked like or something. They were all glowing.

I then blurted out “Is there a super-model pre-requisite here or something?” The attending, who resembled Denzel Washington, grinned his white pearls at me and slowly said “…What?!?”

I said “well it’s kind of rude for me to be hugely fat with pregnancy and with a giant aneurysm in my chest while everyone else here looks like they are supermodels. How’s that supposed to make me feel?” The doctor looked at me in shock. “You’re funny” he said. I guess I wasn’t expected to be joking at a time like this. But it just amused me.

Later I’d find out that the staff at the hospital wasn’t only outwardy beautiful, but some of the most truly inwardly beautiful nurses in the world. People who washed you as thouroughly as they would themselves, people who went above and beyond to try and ease your pain. People who just had to meet me and tell me that while their son didn’t make it out alive, they were very glad mine did. And then would hand me a gift. I was truly surrounded by angels, everywhere I went, at both hospitals.

My family arrived soon after my arrival in New York. My mom, pale with fear, my niece Becky trying so hard not to show how scared she was, Pete, with his tell tale red eyes yet still showing me only strength and no fear, Ed my step-father trying to hard not to let his tears betray him yet failing terribly, my father-in-law Pat doing a great impression of a cool happy guy with no worries, my mother-in-law assuring me I’d be fine, Becky’s fiance looking at me with wide eyes of fear and having no idea what to say….

I felt so badly for everyone. It was harder for them. I was about to just be put to sleep and whatever was meant to happen would. They had to sit through eight+ hours of waiting and worrying.
The doctor arrived. I was told by my OB that he was the best thorasic surgeon in the country. That if he had to send his wife to anyone for something like this, it would have to be him. And somehow my sweet Dr. S was able to get this man to operate on me. Later I would find out from the nurses that everyone was in shock to see this famous doctor at the hospital, in plain clothes on a weekend. This was unheard of. You can read about him all over the internet, here’s one of many articles. He is also a beautiful man, with actual rays of light around him (not kidding) and incredibly humble too. This man knows God.

Dr. G very quietly stated the facts. That this was a risky surgery already because I had already begun to bleed. But that the pregnancy made it extremely risky. There was a vey good chance I would bleed out. It would be very hard to get me to stop. He would do the best he can. Then he asked if anyone in my family had a heart problem, as this type of thing seen in a 35 year old was unheard of. That’s when my mom said that yes, my father died of a dissected aorta.

I had no idea about this.. I always thought it was a heart attack. This news stopped everything in the room. We were all shocked, all silent. The doctor said “well that explains why you are here today”. I felt my world freeze. At this point, I will be honest. I didn’t think I was going to make it. I was named after my dad. Jules. I was about to have his fate. He left me behind as a little baby and I was about to leave my baby behind too. This was just what my fate was supposed to be and I suddenly saw it clearly and sadly. This was it. Now all I had to do was be strong for my family and say goodbye. My poor sweet husband was going to be alone with a little boy. I didn’t want to leave them. I knew what that felt like. I begged God to please let me stay, please don’t let me go. But outwardly, I was quiet. God gave me the grace to just keep it all in and tell everyone I loved them. I just said “let’s get this over with.”

And then I was in the OR….

September 9, 2013
by marfmom
5 Comments

Julie’s Birth Story, Part 1

I’m out of town on an unexpected trip. While I’m gone, my friend Julie is kind enough to share with us her birth story. It will be presented in 3 parts. Thanks, Julie! 🙂

The Story of Max
http://marfmom.com
My niece Becky arrived the night before the baby shower to help me. She came armed with tons of adorable decorations and a heart filled with smiles. We had some yummy Italian food and hung up baby socks on the walls while laughing and talking about my future baby and her future wedding.

The next day, the guests began arriving early. I felt happy, and was excited to see so many people I loved in one place. I honestly forgot how fat I was. My friend Kristen, whom I had not seen in some time, appeared at the front door and it was so nice to give her a hug. Super-realtor Kathy also walked in and I was so excited to see her. I was very emotional, seeing so many people I loved in one place. My mom, sister, nieces, aunts, family, cousins, great friends, were all there beaming of love and joy. Kathy and Beth, Pete’s amazing cousins and Shower Professionals were arranging things, preparing for the games and present opening. The house was buzzing with movement and excitement. Then my aunts arrived and were so kind and sweet. It was going to be a fun day.

About ten minutes in to the beginning of the shower, my aunt wanted to move her chair to the other side of the room. I leaned in towards the chair and slightly bent to help her.

That’s when I felt a pop in my chest. Instantly my lips felt tingly, the pulse in my throat started pounding, I saw stars, my arms felt numb. I had this extreme pain in my back and chest. Something was wrong. I couldn’t believe it. Now of all times? I was supposed to having a baby shower!!!

I didn’t want to make a scene so I quietly left the room and asked my friend Colleen to come over to me. I was trying not to panic. We went outside, along with Beth and my mom and some others and my doctor was called. Of course, like every other time I called the doctor in the past few weeks, I was told to come in to the ER. But should I? Miss the baby shower? What if it was nothing? And why did this “nothing” hurt so damn horribly?

I stalled for about five minutes. I was in so much pain I came close to passing out. Beth, who also happens to be a physician’s assistant, wisely said that I wasn’t feeling any better and I needed to go get checked out. Pete and I left. I asked that everyone stay at the house and enjoy the food.

I sat in the back seat of Pete’s car. I tried to keep calm. On the way there, I felt myself slipping in to another dimension. A dream state if you will. I suddenly had a very clear and unsettling thought.

I was dying.

I am not sure why I knew this but I knew it. I felt it very strongly and I was trying very hard to play it cool. Pete’s eyes kept meeting mine from the rear view mirror; I didn’t want to scare him. I kept as quiet as possible. It was the longest twenty minute ride of my life. At one point he went over a large bump in the road and the pain was pure hell.

I have always been the type of person to hide my fear or pain. As a kid, my mom would watch me fall down and scrape my entire leg terribly, cooly walk in to the house, hide from everyone and THEN cry. I don’t like showing tears or pain or losing my cool. I’m very shy like that.

So when I was finally at the front desk of the ER reception desk and I heard myself hysterically screaming “Please help me I am in so much pain”, I sounded foreign even to myself. I saw the alarm in the woman’s eyes, I heard Pete say “she never acts like this, this is serious”. I even remember begging one of the nurses not to leave me alone at one point, I was seriously in the worst pain of my life.

I was originally diagnosed with a pinched nerve. Dr. S, my obstetrician on call that day, felt so badly for me that he was literally massaging my back for me, trying to help. I could barely contain myself.

I stayed at the hospital overnight in this condition, only to get worse. The vomiting began and got more frequent; the pain never stopped for one second. I was given morphine. It hardly worked. My two nurses, Gerry and Caren, were complete angels, giving me such soft care and kindness that they helped me through every minute. Gerry massaged my neck and shoulders, told me about her life, listened to the story of how I met Peter. I felt like I knew her for years, if not lifetimes.

At 4 am the next day, Dr. S came back to the hospital. He said he couldn’t sleep, that I was on his mind, that he wanted to give me more tests. He mentioned a cat scan. I said no. That I didn’t want my baby to have any radiation. He yelled at me. Said I MUST do what’s best for both of us and that if this were something serious, slight radiation exposure would be nothing in comparison. I then agreed. I didn’t know it then, but this was the moment that Dr. S saved my life.

Within five minutes of returning from the cat scan, Dr. S was kneeling at the front of my bed. His words going through me like lasers, shocking me with each syllable.

“Julie, this is a very serious situation. You have a dissection in your aorta. You must have an emergency c-section tonight and have heart surgery immediately after that. This is a very serious serious situation. You are going to be taken via helicopter to another hospital”

I looked at Pete in disbelief. I couldn’t even absorb what was just said. I blurted out “Am I going to die?”

And then there were those three words that he responded with, that went straight to my core.

“It’s very possible.”

I may have cried for like less than minute but then was told very adamantly that I MUST keep calm. That getting excited could aggravate the situation.

That’s when it occurred to me that I had a bomb inside me. And I had to do all that I possibly could to make it not explode. I didn’t cry again. I hardly showed any emotion again, I simply got as quiet as I could and went Within and prayed. I was in survival mode.

Before I left in the helicopter, Gerry said something to me that was very soothing. “If you weren’t meant to be okay, we would have never found this. You are going to live. Believe that.” Pete also insisted I’d be fine and remained very calm and sure of this for me. I will never forget how strong he was for me. Never.

September 6, 2013
by marfmom
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Friday Favorites

It’s Friday, which means it’s Friday Favorites time! Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too.


Friday Favorites with Musings of a Marfan Mom & Anktangle