On this day 4 years ago, August 29, 2013, I became a heart mom.
Some of you may be wondering what exactly is a heart mom and what is a heart warrior. Simply stated…I am the mom of a child with a heart defect/disease and the heart warrior part means comes from the child living with the defect/disease conquering this defect or disease. No child should ever have to have any illness or defect wrong with them before entering into this world but it happens every single day. I wouldn’t wish this diagnosis on any parent or child no matter the defect/disease or the severeness.
There are currently (according to my knowledge) 40 known CHDs and very little known about what causes them. They have some information about what can cause these defects in some cases besides genetics, but there is not enough research in this field. Chd is the #1 killer of babies in the United States and there is no cure. Most heart defects require corrective surgery or multiple surgeries in the first year(s) of life in order for these children to survive. Here is a list of some heart defects that some may have heard of and some may have been affected by yourselves or someone you love. Click the link to learn more about the defect specifically.
There are many more Chd’s and the severeness and all the complications that are involved are never explained on websites. Most parents do the best advocating for the heart community because we know that sometimes these defects come in pairs and can be extremely complicated cases. If you want the best information about CHD and research and would even like to donate to help our children find better ways to live longer and possible avoid invasive surgeries throughout life, you can do so here…
OUR STORY HERE
On the morning of August 29, 2013, I had obviously dozed off for about 30 minutes to wake to the pediatrician nudging me. She came in that morning to do the work up on the baby and check to make sure she was healthy. She apologized for waking me and said she had already done everything she needed to do there but she did indeed hear a heart murmur and that it was normal for newborns in the first few days to have. She told me not to panic although alarms and red flags were going off everywhere for me and that she was going to notify the cardiology department to have a sonogram of her heart to make sure she was okay. My husband was sleeping and as she walked out the room smiling I just had a sinking feeling inside me. I asked my husband if he was awake and to my surprise, he was and had heard everything. He told me not to worry and freak out that everything would be okay. I was having none of it because I was scared something was wrong with my baby my entire pregnancy and I was bothered finally having something verify the feelings of uncertainty I had before. I got up and demanded to shower so I could feel better. I was having friends come visit us so I was trying to get on with my morning and pray that my daughter was okay. After our company had left after lunch time, they came to take her to do the echocardiogram. To say that I wasn’t scared out of my mind was an understatement. I was shitting myself! I just had my baby girl and the thought of something seriously wrong with her would kill me where I stood and I’d never be able to survive if she couldn’t be with me. They brought her back to the room all snug and wrapped up tight and told us her temperature was low to keep her bundled up tight. That threw me off a lot and made me angry because I just knew the nurse was keeping information from me. It wasn’t long after that the same nurse said they needed to take the baby to the NICU to get her temperature up and that just infuriated me even more. I was scared and mad and feeling emotions I wasn’t ready for or even understood. I asked what the results were from her test and how this all didn’t make any sense and somebody better start talking. She said the doctor would come in shortly to talk to me and my husband but she needed to warm up in the NICU and she rolled my baby away while she was crying and I didn’t even get to kiss her or say goodbye. I was highly upset and I couldn’t even think clearly at this point and I felt like all the blood in my body had rushed to my head. I started fussing and my husband was trying to keep me calm but nothing could calm me. I just knew something was wrong as I always did the whole time I was pregnant.
The Overwhelming Feelings During Pregnancy
Just to clarify a few things before I continue; I took a home pregnancy test on December 27, 2012, only because I was 2 days late on my period and I was having tons of back pain and I just knew the ovarian cyst and all the hormonal issues were faring up full-force and I wanted to make sure it wasn’t a pregnancy. I have PCOS (polycystic ovarian syndrome) and have had cyst for many years come and go and disturb my life. My cycles were always 28 days and I was never really late unless my hormones were thrown off by a cyst larger than a soft ball. My husband and I were never actively trying for a baby and we never prevented pregnancy. I never thought I could have babies with my female problems and we both would be blessed if we did fall pregnant so preventing it was never an issue. On December 30, 2012, I was in my car on my way to my mom’s house when I had a very overwhelming feeling come over me and I began to cry. Some may argue with me but I knew it was a sign from God for preparation. In that moment I knew something was wrong with the little baby I was carrying inside me and I began to pray. I asked God to please let my baby live regardless of the circumstances and no matter what the issue was, just let my baby survive! I felt confident and had faith that God would see me through this and my baby would okay no matter what. I started bleeding twice during my pregnancy, minor spotting but enough to make a trip to the doctor. I questioned my baby’s heart during an ultrasound and to this day have no idea what made me do it but they saw nothing on the sonograms. I even went to the hospital twice for pain and not feeling her move for over 12 hours and she STILL was born via scheduled C-section at 39weeks. I had gestational diabetes, and on the day before her birth, I cried looking at her baby bed in her room in total devastation. My husband had no idea why and told me not to cry that we would be back on Friday. I just knew we would not be back on Friday with our baby girl.
As my husband continues to calm me down, I decide to call my mom. I told her what was happening and expressed my feelings to her. I was all over the place with emotion and I remember little about the conversation with my mom but I do remember her keeping her tone calm and trying to justify the reasons the nurse had to do what she did. I remember standing while on the phone with mom but then I see a doctor coming into the room and I don’t think my legs could stand any longer. I hung up with my mom and I think in that moment the life drained from my body. He introduced himself and then proceeded to tell my husband and I that he found a combination of heart defects during the echo. I don’t know how or when I lost it but I did. I screamed and sobbed so hard and loud that people throughout the hospital could have possibly heard me. I couldn’t hear, breathe, think, or even speak. A part of me died right there in that room in front of that man who very moment that I will never get back ever again. I can only remember pieces of what he was saying. He mentioned being sorry and there was nothing he could do for her and no one there could help her. In my mind, my daughter was dying and I was too because I couldn’t be without her. She just came to me and I loved her like nothing I have ever loved before. She needed to be life-flighted to New Orleans to get proper care for the time being and get together some kind of game plan for her care from here on out. Nothing made sense to me and I just wanted to turn back time and go back to the day before when she was healthy and perfect and nothing was wrong with her. He apologized over and over as the pain of possibly losing my baby tortured my soul. How could this be happening? What did I do wrong? Did I eat the wrong foods? Was it something I did? HOW DID THIS HAPPEN???? WHY? WHY HER? I was angry and broken and I would be forever a changed person, mother, and woman for the rest of my life.
He walked out that room to leave to heartbroken new parents dying inside and we didn’t know what to do or how to do anything at that point. People walked in the room to visit and nothing registered for either one of us but they needed to leave. I didn’t want to see a single soul in my sight. I wanted my baby and my husband and I wanted to go home and be okay. Someone from the hospital came in and made everyone leave for a moment and was trying to help us see our daughter before she was flown out. Eventually, we were able to go see her in the NICU where she was crying constantly because she was hungry and I was shattered in a million pieces. I have never felt such heartache before than to see my baby crying and hooked to monitors and wires and hungry and I couldn’t hold her or do anything for her. Eventually, the staff from Children’s Hospital showed up to fly her out and we got to meet the guy flying the helicopter and the 2 nurses. They were amazing people and promised they were going to take care of her. They put some cute little ear muff’s on her and gave her a pacifier and she calmed right down to get into the incubator. She was loaded into the chopper after we left the room and flown out. When I entered back into my room, my god-daughter Layla was there with my twin sister. She held my hand as I stood in the window sobbing looking for that chopper to take off with my heart and soul inside of it, but I never saw it leave. I soon received the call that she arrived safely and was already in her room in the NICU. WHAT A RELIEF! I asked if the nurse could contact my doctor to get me released that afternoon so I could go be with my baby or I was breaking out the place. I was released by my doctor and was wheeled down empty-handed to the truck where no one was there to take pictures of us leaving the hospital as a family of 3. It was a mother sobbing uncontrollably, empty-handed and a father and husband who felt empty inside as a man because he couldn’t fix his daughter and he couldn’t help his wife. We were both miserable and broken inside and had no idea what kind of future our family would ever see.
Eventually, the staff from Children’s Hospital showed up to fly her out and we got to meet the guy flying the helicopter and the 2 nurses. They were amazing people and promised they were going to take care of her. They put some cute little ear muff’s on her and gave her a pacifier and she calmed right down to get into the incubator. She was loaded into the chopper after we left the room and flown out. When I entered back into my room, my God-daughter Layla was there with my twin sister. She held my hand as I stood in the window sobbing looking for that chopper to take off with my heart and soul inside of it, but I never saw it leave. I soon received the call that she arrived safely and was already in her room in the NICU. WHAT A RELIEF! I asked if the nurse could contact my doctor to get me released that afternoon so I could go be with my baby or I was breaking out the place. I was released by my doctor and was wheeled down empty-handed to the truck where no one was there to take pictures of us leaving the hospital as a family of 3. It was a mother sobbing uncontrollably, empty-handed and a father and husband who felt empty inside as a man because he couldn’t fix his daughter and he couldn’t help his wife. We were both miserable and broken inside and had no idea what kind of future our family would ever see.
We made our way to New Orleans on all the bumpy streets even a day after my c-section in one piece. I had no idea if I could see my baby or anything but I knew I wasn’t leaving there without her. We slept in the NICU waiting room that night and although it was painful for me, the physical pain couldn’t compare to the emotional pain I was feeling being away from my baby the day after she was born. I woke in the middle of the night and just cried and cried and prayed and I just wanted to be with my baby again. I still had no idea what was wrong with my daughter’s heart at this point and time because I was so devastated and crying and screaming to even hear what the doctor said to us. All I could do was pray for good news and pray that this was just a hiccup and she will survive whatever this is. T.he outpour of love and prayers from family and friends got us through the tough times and the hope of a new mother and father to see their baby girl grow up was so strong….we all became heart warriors that day.
Averi was born on August 28, 2013, a beautiful pink, 7 lb, and 19 inches long healthy baby girl. Her pulse ox was 100% with no indication during pregnancy or after birth that there were any issues. She was born with Tetralogy of Fallot w/ Pulmonary Stenosis, Patent Foramen Ovale, and Patent Ductus Arteriosus.
Please become CHD aware and know the signs and symptoms. If it wouldn’t have been for the pediatrician hearing the murmur and deciding to check into it and ordering the echo, my daughter wouldn’t be here with me today. Advocate for the littles and make CHD awareness a priority <3