Sunday, July 18, 2010



Antoinette
Mommy to Alyssa Marie
Born sleeping on February 23rd, 2010 at 12:13pm
New York


My Name is Antoinette. I became pregnant with my first daughter at age 29 on July 19, 2009. I would like to say it was an uneventful pregnancy, but I cant. I was hospitalized in September 09 for severe dehydration and diagnosed with Hypermesis (excessive vomiting). After IV fluids and much needed rest i was released and told to take Zofran once a day until week 20. I am against ANY medication during pregnancy, but after much googling I found there were no risks to the baby by taking it and so I took it on a need to basis.

In my first trimester I lost about 15lbs, in which the doctor was not concerned. I had HUGE HCG numbers and this meant that my baby was strong and growing!! They were even wondering at one point if I may have been carrying twins because they were so high, but after seeing ONE incredibly strong heartbeat we just stuck with "this was a really healthy baby". Once the ALL day sickness lessoned and then eventually stopped I began having awful back pain. I could not walk for more than 15 minutes without literally wanting to cry. I refused ANY type of medication and started seeing an Orthopedist who refused to treat me while pregnant, but said I was suffering from Sciatica, which usually does not start until the 3rd trimester. He referred me to a neurologist who then decided bed rest and some light physical therapy to ease the pain would be his treatment until after the baby was born. At this point I needed my husband for everything. I could not sleep, I could not clean, I could not cook and I could not walk without the pain shooting down my leg and up into my back. It was a sad time for me, I wanted to "enjoy" my pregnancy as much as possible. But, I knew that all this pain and "suffering" would be all worth it once my daughter was born.

When we found out we were having a girl, we were ecstatic. I had planned ALL the things we would do for our lives. We would be best friends and have the best mother/daughter relationship. With every milestone she hit I knew I was closer to having my daughter. She would always measure 2 weeks ahead with her weight and I knew she was going to be earlier than her original due date March 29, 2010.

Through out my pregnancy and BEFORE we even started to try I was tested for all possible complications and all tests were negative. I had no issues during my pregnancy that could possibly affect the baby. At my 28 week scan we saw our daughter moving around and all her organs were perfect. We saw the blood flow through her umbilical cord and with everything coming back perfect we knew that she was going to be just fine. It was not until week 35 that my fears of her not coming home subsided. I finally bought my FIRST baby things for my daughter. I had a baby shower and needed absolutely nothing, but I never had a bought a thing myself.

Two weeks before my life would change forever we were told that Alyssa became transverse in my belly. I became scared at this point that if she turned again she may get the cord around her neck and I was hoping and praying that everything would be ok. It was the last sonogram I had. February 17, 2010 when I brought my stepson who is 14 for the first time with us to see her heartbeat. It was amazing to have all four of us there as a family for his soon to be little sister. Again she was measuring 2 weeks ahead and they estimated she would be about 9lbs!!! She was 6lbs at this point.

The next day I woke up and my ring finger was purple...I was Swollen!! but not anywhere else but my hands. I had to have my ring cut off, which ironically was a cross ring i had not taken off in years. In my heart I knew something was wrong, but I took it as just last minute nerves for the "big day" coming up. The weekend went fine, but Saturday night after eating some spicy ribs I felt sick. I threw up about 7 times, and I was told that sometimes after having such severe morning sickness in the beginning that you will experience some at the end as well as the hormone levels are changing. That night I laid in bed and she was moving all around as usual. She would move ALL night long. It was our special time. I felt so close to her and even though I was feeling sick, I knew she was ok. I finally fell asleep.

It was early in the morning when she started to move around. I was still feeling sick, so I just ignored her. I have NEVER ignored her, as I knew that it meant it was time to eat...but I had no energy. I woke up later that day with some "braxton hicks" and noticed she had "fallen asleep"....these braxton hicks lasted ALL day, and it was unusual but they were not coming on a schedule and were not painful so I just assumed like I was being told that it was just my uterus practicing for the big day. That night I laid in bed and felt nothing...I poked and poked and felt nothing....My gut instinct new something was wrong, but I wanted to believe what the books were saying. It was the end, she was really big, and the movements would lesson and she would begin to sleep more.

The next morning I woke up to having so many of these braxton hicks and so i called my dr. He was yelling at me saying I should have called sooner, as I could be going into labor. He says if you experience pain, or they become bothersome call me and I will have you go into the hospital otherwise I will examine you tomorrow. At the same time my custom made crib was delivered....Tears formed in my eyes as I thought OMG, im going to have my baby this week!! I call him back and say Dr, I forgot to mention that I had not felt the baby kick today. He was worried. "Meet me in L&D right away" I assumed that with contractions the baby doesnt move and since he thought i was in labor that this was the reason why. I hurried and showered, the whole time Poking her and praying to every God I could. "Please move Alyssa...Please" but nothing...we get to the hospital and the nurse puts the doppler to my belly...and there goes a heartbeat...ok, we got it...I said "WHATS THE BPM!! WHATS THE BPM?" she said its 122...I said "That isnt hers!! she is always 165!!" and so they bring in the sonogram machine...There it was in black and white...My baby, still as can be, and what usually has a strong pumping little heart had nothing....3 different Drs came in to check and with tears in her eyes she says "I am so sorry, you know when you said you can usually see the heart beat right here, well.....There is no heartbeat".....I started screaming "NO NO NO..tell me your lieing...CHECK AGAIN....no no no...." I begged my husband to tell her she was lying to me....I could not believe my baby died....it was the worst thing I ever thought I would hear...within minutes I was told I would have to deliver her vaginally...I BEGGED them to knock me out and give me a C-section, but they refused. They said that it was a major surgery and they would not put my uterus through that for the risks involved with a future pregnancy...."Future pregnancy lady, I am NEVER doing this again...are you kidding me KNOCK ME OUT!!!"

I could not believe that the only thing I was never afraid of my whole pregnancy was child birth. I knew that those hours of pain that I would endure would be giving me such a special gift, and after months of dealing with my pains without any medicine I was not worried at all. Now the day was here and I had to deliver my daughter without her even being alive. I was induced and given an epidural. I was told that my "braxton hicks" were full on contractions and they were very surprised at how I was able to handle the "pain"...I must reiterate i had NO PAIN...with these contractions, and I only took the epidural because the nurses said "Why wouldn't you at this point" and they were right.

I was given some Ambien and fell asleep...I woke up in the morning of February 23, 2010 to them telling me that I was now going to be given Pitocin as the pill they gave me did not work. I had now been laboring for 20 hours but I did not feel a thing. They pumped me with so much drugs I did not even know where I was. I suddenly felt the need to "push". I have never been in labor before, but my instincts began to kick in. i called the nurse and she insisted that I was not ready yet, and I screamed "Get the dr because i can feel her head!!" I was right I was fully dialated and it was time.

The whole birth plan was for my husband and my sister to be in the room, but this plan changed when I heard she was dead. They would not listen to me. They both insisted on being in the room and there she came, after 4 pushes and an episiotomy, she was born into the world.

Alyssa Marie Evola, 6lbs 6oz and 19 inches. They cleaned her off and brought her back into my arms. I could not believe my miracle was NOT looking back at me. Instead she looked as though she was sleeping, and I told myself this so I would be able to hold her. I was so scared. I could not believe she was gone. My perfect little princess and she would not be coming home with me. She had mommy's hands and daddy's feet. My biggest regret was not taking more pictures of her, with her and not holding her long enough. I wish someone would have told me it would be ok. I wish someone would have told me that those moments would linger in my head forever, as they are still so fresh in my mind.

The whole week was a blur. We buried her the Friday after. After weeks all my results came back negative with NO CAUSE for her death, her autopsy results came back with "No indication that there were any abnormalities with fetus, and no cause for death" I became fixated on this. There HAS TO BE something wrong, and one of my journals i posted in BBC.com was about the results. I got a letter from a woman I had never met, and she told me she had the same results and insisted that I ask to be tested for MTHFR. I expressed this to my Dr who also insisted I tested Negative to ALL blood clotting disorders and that I had tested this way TWICE....but what he doesnt know is that MTHFR is its OWN test. This genetic blood clotting disorder is not part of prenatal testing. It was discovered ten years ago and not many dr's are educated on it. And so I got my hospital records on my own and I googled EVERY WORD in her results. The one statement that stuck out to me in her results was "Pre-mortem blood clot in the umbilical cord."

Well When I brought this to his attention he stated that this was just not enough evidence. When a fetus died the blood stops flowing and that could have started to coagulate once the flow stopped. I would NOT take this answer from him, and so I insisted on the MTHFR test again. 2 weeks ago the results came back, 4 and a half months after thinking that this was "Just a fluke" as they were calling it....and it was POSITIVE FOR
ONE copy of the C677T mutation and ONE copy of the A1298C Mutation...I am "Compound Heterozygous" according to the report. Now I have closure. I was not crazy. These things just DONT HAPPEN, for no reason, well especially not in my case. My dr. was still convinced this doesnt affect Alyssa's death and that it affects M/C. I got in touch with a Maternal Fetal Medicine dr and after hearing my story he is almost positive that they ARE connected. He says that a future pregnancy would require extra folic acid, a baby aspirin, and a Lovenox shot. What he also said was that this condition is serious without being pregnant and that I should be on a baby aspirin and extra folic acid for the rest of my life.

My heart is broken in ways I can not write. I try to keep her alive every day. I started a blog for her, I have a tattoo for her, I see and think of butterflies when I think of her. She was and will always be my little butterfly. May her story teach someone to go with their gut instinct. Do not take your dr's word as the final one. I trusted my dr and I was with him for 5 years. But he was wrong, and had I not INSISTED and listened to him on trying for a rainbow as soon as we were able, who knows where I would be again. Alyssa, Mommy and Daddy miss you more than anything. Those 36 weeks we spent together were the happiest times in my life. You changed me and hopefully your story can change the world. God bless all these Angels. Butterfly Kisses Alyssa Marie.

Antoinette blogs at Butterfly Kisses for Alyssa Marie
(her blog is set to "private," but if you send her your email address, she will make sure you can access it)
You can contact her at Antoinettestabile@msn.com

3 comments:

Kelley said...

Thinking of you and Alyssa...as always. xoxo

Nicole said...

Antoinette, I'm so sorry about your sweet girl. I lost my Avery in March to MTHFR as well. And I too, think of my daughter when I see butterflies. :) Love to you!!

Bethany said...

Oh Antoinette... your story has me in tears. I am so sorry. I too wish I had held my son longer, and taken more photos, it breaks my heart that we only took one picture of each of us holding him. If only... ((Huge hugs to you))

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