FOL

Mary Kate

Mom to Charlie Valor

October 29, 2015 – December 22, 2015

Philadelphia, Pennsylvania

“A honeymoon baby!!!” My mom had the best reaction when we told her I was pregnant. It was May 2015, six weeks into the pregnancy. I was glowing and couldn’t hide it.  I remember looking in the mirror saying to myself, “You are a mother.”

I travel for my job, and over the next three months, I had two meetings in Europe and another meeting in Asia scheduled. I saw the OB and had my first ultrasound 2 days before I left for my business trip to Europe. At that 8 week ultrasound, we found that there was a vanishing twin. This saddened me, and it gave me my first taste of fear in my pregnancy.  I could have been Mommy to twins, and it scared me to think about how the surviving baby would be affected. At the eleven week ultrasound, I was reassured that the baby was ok, measuring on target.

In July, I planned for my 2 weeks of traveling to Europe and Asia. We announced our pregnancy on July 4th. We posted the picture of the ultrasound that said “Baby – You’re a Firework! Bottles will pop New Year 2016.” In August, I came back from my travels exhausted and jet lagged. I was looking forward to a family vacation with my parents, brother, sisters, and their families.

The 20 week ultrasound took place the day before vacation. We were giddy. We joked and laughed while the tech showed us our baby. We were handed the baby’s pictures and my husband was about to text one to his mom. The perinatologist then came into the room and shocked/terrified us by saying, “Your baby is not growing adequately. I am very concerned.” At that moment on August 21st, our lives were changed.

We were informed that our baby had early severe intrauterine growth restriction (IUGR). The baby weighed only 178 grams, measured only 16 weeks, had absent/reverse blood flow with a single umbilical artery, and was below the 3rd percentile. If I continued with the pregnancy, the doctor projected that I’d deliver by c-section in the next few weeks, and would most likely develop high blood pressure. Nothing could be ruled out as the cause for IUGR, and so we agreed to do an amniocentesis that day.

Most of what was explained to us that day was a blur to me. I took notes that I later threw out because they made no sense. I went home and sobbed uncontrollably. My baby, how could this be? I was healthy and in the best shape of my life.

The “vacation” week was surreal. I laid in bed,cried, and googled everything about IUGR. I went to the beach and prayed. I broke down in church. This baby was mine, and I was going to give them a chance at life. In the next few weeks,we found out we were having a boy. And the amino revealed no chromosomal issues to explain the severe IUGR. We had bi-weekly growth ultrasounds. Our baby boy continued to grow but at an extremely slow pace, only 30 grams in 2 weeks, then 60, then 80, then 30. It was grueling, but we had hope and were not giving up on our little fighter.

At 27 weeks,  I developed gestational hypertension, was admitted to the hospital overnight, and received steroid shots. My doctors started watching me for pre-eclampsia with weekly appointments,blood tests twice a week and 24 hour urine analyses. I started working from home to limit my activity and laid on my left side to promote better blood flow. I drank 100 ounces of water a day, increased my protein intake and drank Ensure. I joined an IUGR support group on Facebook which gave me enormous hope for these little fighters. I figured that if I could get him to the viable fetal weight of 450 to 500 grams, modern technology would take over from there. 

My own health began to deteriorate. My hypertension was barely controlled with my medication and I began itching uncontrollably, a condition called Cholestasis of pregnancy.

On October 29, 2015, at 30 weeks, I packed a bag and my husband and I left for our growth ultrasound. I remember looking up at the morning sky and prayed for my baby and for strength that I’d be able to handle what was to come next.

I shook uncontrollably from nerves during the ultrasound, and I cried happy tears when our baby gained 100 grams and now measured 480 grams! He was viable! My doctor advised that we’d have to deliver soon as he was in distress. I was admitted to L & D, given a steroid shot and an IV of magnesium. They strapped the fetal monitor on my belly but had difficulty finding his heart beat because he was breech and tiny. After too many heart decelerations, time was of the essence. They needed to get him out right away. Before I was rushed to the operating room, the neonatologist advised me with kind eyes that there was a 90% chance my baby wouldn’t make it. Through my tears, I told him all I wanted was to give him a chance at life.

I woke up to hear the sweet news that my baby survived and beat the odds. I named him Charlie Valor. He was 1 lb, 1 oz and 10 1/4 inches. He was on an oscillating ventilator, but overall was doing ok. We had him baptized that evening. I was wheeled up to the NICU to finally meet him and hold his tiny hand. My heart melted.  I was in love. He was beautiful- blond hair, tiny hands and feet and the cutest button nose. Hello my precious Charlie Valor, my miracle baby.

The first 10 days is often called the “honeymoon” phase in the NICU for these babies. He started to gain a little weight and was on the lowest oxygen vent settings. He was jaundice, and had low platelet counts, requiring platelet and blood transfusions. The nurses took a picture of Charlie and made a card that said “Good morning Mommy and Daddy! I’m growing and getting stronger.”

I couldn’t hold him because of the ventilator, but I’d spend hours over his bed, laying my hand on his head, and slipping my finger into his tiny hand. I’d whisper, “Mommy loves you, I’m so proud of you. You’re doing so good.” I’d sing, “You are My Sunshine” over and over. I wanted Charlie to know his mommy was there with him among all the scary sounds, IVs, and daily blood tests. I wanted to be his comforter and cheerleader.

Charlie fought for 54 days in the NICU and we fought right beside him.My husband and I became very familiar with the 30 minute drive to the hospital. Between the two of us, we’d be there 6 to 10 hours each day. We’d call to check on him at 10:30 pm, and then again at 5:30 am. We kept a blog of his journey. It had thousands of hits. Family, neighbors, and friends rallied around us with prayers and messages of support.

The NICU was hell. However, my husband would say that the NICU, “was filled with saints.” The nurses, respiratory therapists, social workers, support staff, and doctors were amazing. We were so glad Charlie was surrounded by these special people.

At 11 days, Charlie had surgery to insert a broviac catheter in his chest since he needed so many medicines and blood products. As the weeks progressed, his liver showed damage as his bilirubin continued to climb to extremely high levels. His lungs were not developed enough to be weaned off the vent. His platelet counts were consistently low, so platelet transfusions became a necessity almost every other day. Doctors could not pinpoint the exact cause of his low platelet count.

At 25 days, shortly after Thanksgiving, he developed an infection and his entire body swelled up with fluid and he gained hundreds of grams in a few days. His skin stretched and blistered. We could no longer see his eyes which were swollen shut. The medical team administered antibiotics and had to stop feeding him breastmilk for 3 weeks. His blood pressure started to get lower, so he was given powerful medicines to try to regulate it. His liver was getting worse because he could not get proper nutrition from breastmilk.

I’ve never felt so helpless as I watched my baby get sicker. I prayed the rosary over him, and I asked his guardian angels to watch over my baby. He valiantly fought the infection and lost some of the water weight. Doctors started to feed him breastmilk in hopes of improving his condition.

At 48 days, on December 16, the nurse and respiratory therapist worked their magic so that I could hold my baby for the first time. I wept happy tears as I held him in my arms and nuzzled his nose. Two days later, my husband held him and we dressed him up in a little Christmas elf hat and serenaded him with Christmas carols. I treasure the memories and pictures/videos from those days.

Unfortunately, at 53 days, that joy turned quickly to heartbreak. Charlie’s blood pressure dropped dangerously low, no longer responding to the powerful medications. His ventilator had to be turned up to the highest settings.

The meeting that I’d been dreading took place with the doctors- Charlie was dying, there was nothing else that could be done to help him.  As impossible as it was to accept this, we didn’t want Charlie to be alone. A priest arrived and anointed Charlie in the sacrament of confirmation. On December 22, 2015, at 54 days, Charlie was taken off his ventilator, wrapped in a blue blanket and handed to his mommy. For 20 quiet, sacred minutes I held him close to me, breathed him in, kissed him, sang to him and told him over and over how much I loved him. I held an Angel who went to Heaven…a precious angel whose fighting spirit for life inspired so many people- inside and outside of the NICU.

I miss my baby so much and ache to hold him again. There still is no known cause for the IUGR. And when he was the NICU, he could not catch a break as he contracted infections and couldn’t get the nutrition he so badly needed to get better.

Some days I wake up and think, was this all a nightmare? This is my life now. I’m a mother with a broken heart. People ask how I am doing. How do I answer that question? I’m surviving with a piece of me missing. My baby is gone.

Despite the stressful pregnancy, the pain and heartache of watching Charlie fight for his life in the NICU, and now the emptiness of losing him, I’d do it again to be able to meet my little love, my precious Charlie Valor.

You can email Mary Kate at marykate.webber@gmail.com.

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Comments

  1. Elizabeth says:

    Mary Kate,
    I’m sobbing for you- My heart aches to read your story. What a little fighter your Charlie was! Please , please, read my story on here (December 23rd it posted) because there are so many similarities……I can’t even begin to describe the pain that I feel (but you know it to well) I didn’t get to hold my sweet girl and I wish every day that I could go back and change the way everything happened. I also had a “placental issue” but it could not be determined based on anything regarding the cord insertion, etc. it just “looked funky”. I’ve also had SO many blood tests to check for clotting disorders (factor five Leiden, MTHFR, etc.) lupus, apa, you name it I’ve had it checked. I’ve also had a Uterine biopsy and a HyCoSy procedure done….nothing, no answers…everything has come back normal. I just wish I had her here and to not have my sweet Brielle Grace AND have no answers as to why this happened is literally killing me. I am so sorry for your loss- know you are not alone and I would love to chat with you if you ever feel up for it. My email is ecavanna85@gmail.com my big take away from all the procedures and blood tests and specialists is to take a baby aspirin a day.

    I see you live close to Philadelphia….there is a beautiful shrine in Warminister – the Saint Gianna Molla shrine. Her story is amazing if you have never heard of her….going there and praying to her and touching her relics were healing….it’s such a journey and any comfort you can bring yourself- the better. The church is beautiful & has its own website- you can check out shrine hours.

    Praying for you & your family. I pray to God we both have a very happy & abundant 2016.

    God bless,
    Liz

    • Mary Kate says:

      Liz,

      Thank you for reaching out to me. My heart is aching for you after reading your story. I’m so so very sorry. Just want to give you a big hug.
      I wish with all my being that there was more known about what causes IUGR, I never knew it existed until August. It was so beyond frustrating because I had no idea my baby was in danger until 20 weeks into my pregnancy. I had no control over what my body was doing, and no one could tell me why it was happening.
      They did send the placenta to the lab and it came back “unremarkable’….no explanation. The only other thing that the doctor said was that the umbliical cord had the diameter of a coffee stirrer instead of a straw. But I dont know if that explains the bloodflow issues.
      And when my Charlie was in the NICU, they’d not seen a 30 week baby that only weighed 1 lb., so there was alot of heartache in the fact there were more questions than answers on his condition. Its almost like he was an older baby in a younger baby’s body, and he just fought to try to overcome his issues, because he was so used to fighing to survive.

      Im going to look into the shrine in Warminister. Thank you :)

      I would like to contiue our chat. I am here for you too, you are not alone. I’m so very sorry for your loss. You are in my prayers,Momma. Our angel babies are watching over their Mommys as well, I truly truly believe that.
      Let’s stay in touch.
      God bless you. Love to you,
      Mary Kate

  2. Oh Mary Kate my sweet friend
    I cried reading this, just as I cry every single time I hear your story. Its so freaking unfair.
    Charlie was such an amazing little fighter, and he should be here with you.
    I am always here for you. I’ll never stop texting you or saying your sons name.
    He will always be remembered, and you will never be alone in your loss.
    I’m so sorry momma.
    I think of you and your family and precious Charlie Valor every single day.

    Tina

  3. Charlie Valor is the perfect name for your sweet boy. I am so so sorry that you are living this nightmare. I wish none of us had to live in a world without our child/children. As someone else who is living without her children I want so badly to make this pain go away but I know that I cannot so instead I am sending you hope, hugs, prayers and peace. You are not alone and Charlie Valor will always be remembered.

  4. Veronica Gill says:

    He was so lucky to have you as his mom!

  5. Samaneh Wilkinson says:

    Thank you for your story. I hope you can get peace in the coming months and years. Xoxo

  6. Gayle OCallaghan says:

    Tomorrow will be 10 years since my grandson and granddaughter past away, it was the hardest day of my life, but I have 2 beautiful granddaughters, and I think Kenley and Chase have made me a better grandmother for them being born… There’s not a day that goes by that I don’t think of them and talk about them, they were here just for a short time, but they made a huge place in my heart… I love and miss you you two angels… Love you Mimi

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