Journal entry by Gretchen Bernal —
Dear Stephanie,
Howdy from San Antonio, TX! I'm Gretchen, sister of your St. Jude's Catholic Church Youth Minister, Miss Ailene. I remember you from high school, a contagious smile. I know your brother Brandon, he graduated one year before me and I believe you graduated one year after me. I went to Kelly and graduated in 2001, but as we take a trip down memory lane, I know in my heart that we are connected by our Catholic faith.
Last week my sister informed me that you delivered twin boys at 24 weeks. I talk to my sister often and the day she told me this, I stood in the shower and began to cry knowing that I walked a similar journey that you and your family may be on. I don't want to say I know exactly what you are going through, but I want to tell you that we are praying for you and to remind you that God has a Plan.
To give you a glimpse of our journey, I delivered my first child, Graciela, who we call Gracie, on May 7, 2018 at 24 weeks. (She was born at 1 pound, 6 oz.; she's currently 23 pounds.) We were so thrilled that after hoping for a little one, God answered our prayer. What we were not expecting was that she came so early. Not knowing the signs of "water breaking", the feeling of contractions, my water broke on May 4, I rested the next 3 days at home and on May 7th experienced contractions, what I thought to be cramps. I arrived at the hospital by 9:30 pm and Gracie was delivered by 11:20 pm. Life was never the same again.
We spent 308 days in the NICU (that's 10 months), we were transferred from one hospital to another after one month of Gracie's birth. Gracie had a litany of health problems that we still work with today, G-Tube and Broviac Cathether. I believe the most common challenges for preemies is lungs development, Gracie's challenges were liver related. Within the first week of life, she had a perforated intestine, which lead to her first 2 surgeries 9 days after her birth. The doctors removed 70% of her small intestine, an intense surgery that could not be completed in one surgery but 2. The doctor said if they found any other damage during Surgery #2, Gracie would not be here today. Gracie is now considered as a short-gut baby. Through the Grace of God, she pulled through, but in the post operation discussion, Dr. Kidd (his name is ironic to me) told my husband, Javier and I, that Gracie would qualify for an experimental drug that would be needed for her liver. The doctors forecasted that her liver, which was already starting to deteriorated, needed medical help that they couldn't give her. By June 5, 2018, we were transferred to the Children's Hospital in downtown San Antonio. Changing hospitals is like changing "schools", new "teachers", new "classrooms", new "rules", another stressful change that we didn't want to make, but knew that we had to.
Once again, by the Grace of God, one of Gracie's current in-home nurse that worked with her a few times in the NICU last June has given us insight to what she saw in our story last June. Nurse Sarah told us that her Charge Nurse was transparent with her saying that "no one really knows what direction this child will go. There is no exact plan if Gracie would live or pass away, BUT the family is hopeful and sings to the baby."
Do you remember the song "Sanctuary"? It says "Lord prepare me, to be a Sanctuary. Pure and holy. Tried and true. With thanksgiving, I'll be a living sanctuary for you." This was my song, this was my prayer. I can tell you, Stephanie, as much as I wished to be a mother, I didn't how to do it with a child in the hospital. So I turned to what I knew, my faith. I loved to sing in church, although I never sang in the choir. Growing up in Catholic schools, so many church songs were engrained in my mind and heart. So what did I do, I sang to my child and those were my prayers. The Summons. The Servant Song. Eagles Wings. Sanctuary. We even asked our Director of Religious Education if we could borrow a hymnal we could keep in Gracie's room.
Stephanie, as the hospital became our new life, I was numb, I was traumatized, I was physically and emotionally hurting, and I wanted to know why, why did this happen, what did I do wrong? It was a time in my life that my mind and body were not in sync as so often they are. If you feel anything like this, it's okay.... it's truly okay. It's okay to cry, it's okay to question every detail up to this point, but above all, remember to pray. I taught 9th grade CCD at my church up until the day I delivered Gracie, and the most important lesson I talk these 9th graders, is that prayer is just a conversation with God. What I wanted to engrain in their minds, I needed to engrain in myself. Stephanie, it's okay to present all your thoughts in prayer. Whether they are mean words, whether they are doubting words, just talk to God. And if there are days where you say "I don't know what to say", it's okay to say that too. People are thinking about you and praying for you.
Gracie's journey has not been an easy one. Perforated intestine. Grade 2 brain bleed. Liver biopsy. Jaudice. PDA. Problematic retina development. Ostomy. G Tube. Broviac Cathether. Nasal cannulas. O2 monitors. Brady D-SAT's. Excabation. TPN dependency. We weighed her every day, hoping weight gain was a positive sign of growth. Dr. Mitchell told us "there's nothing more we can surgically do for your child." Doctors walking us through what our options were if she passed. In the first year of life, Gracie had 10 surgeries. My husband and I moved into the Ronald McDonald House once Dr. Mitchell made the "nothing more we can do" comment. We lived there for 6 months just to be close to her. At our hospital, the NICU was on the 3rd floor, the Ronald McDonald facility with on the 4th floor.
Stephanie, as you can see, I could write a novel about the birth of our micro-preemie, miracle. And your children are miracles too. While so many people are reaching out to you, I'd like to be on that list as well. My sister saw Brandon at the gym the other day, he shared a photo of your kiddos, I asked about you yesterday, she shared the photo with me. The nasal cannulas brought me back to those isolette days.
If you are looking for resources to get you through, there's a book called Girl in Glass by Deanne Fei, about a mother's NICU journey. I enjoyed reading the March of Dimes website opposed to randomly googling every medical term a doctor or nurse mentioned to me. I'm currently reading a book called Praying for your Unborn Child by Francis Macnutt. I turned to praymorenovenas.com, for those days I couldn't find the words to say in prayer. I prayed the St. Jude Novena often and learned about St. Gianna Molla and asked her to intercede for us as well. She is a modern day saint, patron saint of unborn babies and expectant mothers. If there is a particular novena you'd like to pray, let me know and I'd be honored to pray along with you from down here in Texas.
The journey may be long, but I firmly believe God picks special individuals like you and your husband for this special journey. God has a Plan, just remember to turn to Him. If I could help you get through each day, remember the NICU life is about one day at a time. It's important to celebrate ALL milestones, no matter how small or how big they may be. Try hard to take care of yourself, so you can take care of your kiddos. Drink plenty of water and try to take naps. Ask questions to the medical team. Feel comfortable with your Nursing Team and ask for repeat nurses if you feel a special bond with any of them. NICU Nurses are very special. Ask for help whether it be prayer, food, hugs, a shoulder to cry on, a listening ear. You are not alone. You are strong! You are faith filled! Just like your twins, you are a child of God.
Stephanie, I pray that you find strength knowing that you are not alone. Please feel free to call or text me if you need anything.
Your Sister in Christ & Mommy of a Micro-Preemie,
Gretchen Luistro-Bernal
mobile: 210.438.2701
Howdy from San Antonio, TX! I'm Gretchen, sister of your St. Jude's Catholic Church Youth Minister, Miss Ailene. I remember you from high school, a contagious smile. I know your brother Brandon, he graduated one year before me and I believe you graduated one year after me. I went to Kelly and graduated in 2001, but as we take a trip down memory lane, I know in my heart that we are connected by our Catholic faith.
Last week my sister informed me that you delivered twin boys at 24 weeks. I talk to my sister often and the day she told me this, I stood in the shower and began to cry knowing that I walked a similar journey that you and your family may be on. I don't want to say I know exactly what you are going through, but I want to tell you that we are praying for you and to remind you that God has a Plan.
To give you a glimpse of our journey, I delivered my first child, Graciela, who we call Gracie, on May 7, 2018 at 24 weeks. (She was born at 1 pound, 6 oz.; she's currently 23 pounds.) We were so thrilled that after hoping for a little one, God answered our prayer. What we were not expecting was that she came so early. Not knowing the signs of "water breaking", the feeling of contractions, my water broke on May 4, I rested the next 3 days at home and on May 7th experienced contractions, what I thought to be cramps. I arrived at the hospital by 9:30 pm and Gracie was delivered by 11:20 pm. Life was never the same again.
We spent 308 days in the NICU (that's 10 months), we were transferred from one hospital to another after one month of Gracie's birth. Gracie had a litany of health problems that we still work with today, G-Tube and Broviac Cathether. I believe the most common challenges for preemies is lungs development, Gracie's challenges were liver related. Within the first week of life, she had a perforated intestine, which lead to her first 2 surgeries 9 days after her birth. The doctors removed 70% of her small intestine, an intense surgery that could not be completed in one surgery but 2. The doctor said if they found any other damage during Surgery #2, Gracie would not be here today. Gracie is now considered as a short-gut baby. Through the Grace of God, she pulled through, but in the post operation discussion, Dr. Kidd (his name is ironic to me) told my husband, Javier and I, that Gracie would qualify for an experimental drug that would be needed for her liver. The doctors forecasted that her liver, which was already starting to deteriorated, needed medical help that they couldn't give her. By June 5, 2018, we were transferred to the Children's Hospital in downtown San Antonio. Changing hospitals is like changing "schools", new "teachers", new "classrooms", new "rules", another stressful change that we didn't want to make, but knew that we had to.
Once again, by the Grace of God, one of Gracie's current in-home nurse that worked with her a few times in the NICU last June has given us insight to what she saw in our story last June. Nurse Sarah told us that her Charge Nurse was transparent with her saying that "no one really knows what direction this child will go. There is no exact plan if Gracie would live or pass away, BUT the family is hopeful and sings to the baby."
Do you remember the song "Sanctuary"? It says "Lord prepare me, to be a Sanctuary. Pure and holy. Tried and true. With thanksgiving, I'll be a living sanctuary for you." This was my song, this was my prayer. I can tell you, Stephanie, as much as I wished to be a mother, I didn't how to do it with a child in the hospital. So I turned to what I knew, my faith. I loved to sing in church, although I never sang in the choir. Growing up in Catholic schools, so many church songs were engrained in my mind and heart. So what did I do, I sang to my child and those were my prayers. The Summons. The Servant Song. Eagles Wings. Sanctuary. We even asked our Director of Religious Education if we could borrow a hymnal we could keep in Gracie's room.
Stephanie, as the hospital became our new life, I was numb, I was traumatized, I was physically and emotionally hurting, and I wanted to know why, why did this happen, what did I do wrong? It was a time in my life that my mind and body were not in sync as so often they are. If you feel anything like this, it's okay.... it's truly okay. It's okay to cry, it's okay to question every detail up to this point, but above all, remember to pray. I taught 9th grade CCD at my church up until the day I delivered Gracie, and the most important lesson I talk these 9th graders, is that prayer is just a conversation with God. What I wanted to engrain in their minds, I needed to engrain in myself. Stephanie, it's okay to present all your thoughts in prayer. Whether they are mean words, whether they are doubting words, just talk to God. And if there are days where you say "I don't know what to say", it's okay to say that too. People are thinking about you and praying for you.
Gracie's journey has not been an easy one. Perforated intestine. Grade 2 brain bleed. Liver biopsy. Jaudice. PDA. Problematic retina development. Ostomy. G Tube. Broviac Cathether. Nasal cannulas. O2 monitors. Brady D-SAT's. Excabation. TPN dependency. We weighed her every day, hoping weight gain was a positive sign of growth. Dr. Mitchell told us "there's nothing more we can surgically do for your child." Doctors walking us through what our options were if she passed. In the first year of life, Gracie had 10 surgeries. My husband and I moved into the Ronald McDonald House once Dr. Mitchell made the "nothing more we can do" comment. We lived there for 6 months just to be close to her. At our hospital, the NICU was on the 3rd floor, the Ronald McDonald facility with on the 4th floor.
Stephanie, as you can see, I could write a novel about the birth of our micro-preemie, miracle. And your children are miracles too. While so many people are reaching out to you, I'd like to be on that list as well. My sister saw Brandon at the gym the other day, he shared a photo of your kiddos, I asked about you yesterday, she shared the photo with me. The nasal cannulas brought me back to those isolette days.
If you are looking for resources to get you through, there's a book called Girl in Glass by Deanne Fei, about a mother's NICU journey. I enjoyed reading the March of Dimes website opposed to randomly googling every medical term a doctor or nurse mentioned to me. I'm currently reading a book called Praying for your Unborn Child by Francis Macnutt. I turned to praymorenovenas.com, for those days I couldn't find the words to say in prayer. I prayed the St. Jude Novena often and learned about St. Gianna Molla and asked her to intercede for us as well. She is a modern day saint, patron saint of unborn babies and expectant mothers. If there is a particular novena you'd like to pray, let me know and I'd be honored to pray along with you from down here in Texas.
The journey may be long, but I firmly believe God picks special individuals like you and your husband for this special journey. God has a Plan, just remember to turn to Him. If I could help you get through each day, remember the NICU life is about one day at a time. It's important to celebrate ALL milestones, no matter how small or how big they may be. Try hard to take care of yourself, so you can take care of your kiddos. Drink plenty of water and try to take naps. Ask questions to the medical team. Feel comfortable with your Nursing Team and ask for repeat nurses if you feel a special bond with any of them. NICU Nurses are very special. Ask for help whether it be prayer, food, hugs, a shoulder to cry on, a listening ear. You are not alone. You are strong! You are faith filled! Just like your twins, you are a child of God.
Stephanie, I pray that you find strength knowing that you are not alone. Please feel free to call or text me if you need anything.
Your Sister in Christ & Mommy of a Micro-Preemie,
Gretchen Luistro-Bernal
mobile: 210.438.2701
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