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From Mommy (Kimberly Gomez): In October of 2010, I found out that I was pregnant with baby #3! The first person I told was my husband Mark and then after a few weeks, we let our older children, Mark Aron and Avaree in on the news! They were so excited and could not wait to have a new baby brother or sister. They also couldn’t wait to tell everyone they saw! So we came up with a short poem and had Marky and Ava give it to our parents to announce the arrival date of our newest addition. At our 20 week sonogram, we were delighted to discover that we were having a baby girl. She was the picture of health and looked very similar to our older two kids. We wasted no time in picking out her name and remodeling Mommy’s office into a nursery. On June 30, 2011, Audree Rose Gomez made her debut, weighing 6lbs 8oz and measuring 19 inches in length, making the perfect addition to our family. During the hot summer months that followed, Audree spent much of her time with Mommy indoors and in the shade while her brother and sister played in the sprinklers. She loved to keep an eye on her brother and sister, as they laughed and played. They fascinated her. She even would sleep in their arms, while they took turns rocking her in Mommy’s chair. In the evenings when Daddy got off of work, he would spent hours holding Audree and enjoying the life of a proud Daddy of 3. As the days began to grow shorter and the temperatures began to drop, we looked forward to those cozy evenings in front of the fire place with our three precious children. Little did we know that in a matter of moments, our world would be shattered… our sense of stability forever shaken and our dreams forever changed.
Wednesday, October 5, 2011, began as any other day for our family. Mark and I went to work, Marky and Avaree went to school and Grammy (my Mom) kept Audree. Around noon, Mark picked Audree up and spent the afternoon and evening with his parents. After school, we took the kids to Kid’s Zone at our church and then went out to eat with Papa (my Dad). During dinner I noticed that something seemed “off” with Audree. She sounded funny when she was breathing and her cry sounded different. We decided it was a good idea to take her to the ER in Amarillo. At the ER the nurses initially were skeptical that anything was wrong with Audree. She was not running a fever and she was all smiles. However, I was insistent that something was off (THANK YOU GOD FOR THOSE NUDGES). A doctor passing through the triage area decided he would just take a quick listen… probably to pacify Momma However, after listening to Audree he told the nurses to get Audree into a room and not to allow any fluids. After running all kinds of tests and xrays (which all came back negative), the ER DR determined she had an Upper Respiratory Infection and sent us home with breathing treatments. Thursday passed with Audree sleeping alot, barely eating, and doing breathing treatments. On Friday, I returned to work and left the kids with my Aunt Aline (Thank God for Aunts and Grammy’s who are willing to watch our kids!) Around 9:30, I felt this strange sense of uneasiness and I called to check on Audree. Aunt Aline reported that she only ate 1 oz of her bottle and was sound asleep, again. I couldn’t shake the uneasiness that I was feeling and decided to check in with our Pediatricians (Thank you God for those nudges!). After hearing about Audree’s situation, they immediately told me to bring Audree in ASAP. Once we arrived at the pediatrician’s office, Audree’s oxygen saturation (O2 sats) were at 83%. After 2 breathing treatments with oxygen hooked into the mask her O2 sats had barely reached 89%. Audree was then taken to the Pediatric Intensive Care Unit (PICU) at BSA by ambulance. Audree was placed on the High Flow Nasal Cannula and watched very closely. Her heart rate ranged from 178-198 and she struggled to breathe. She had a spinal tap, blood tests, RSV, Flu tests and every other test imaginable… all coming back negative. The PICU doctor, Dr. Nandu, determined that Audree had a severe laryngotracheal bronchial infection and a urinary tract infection. He began treating her for these conditions. On Saturday, we had just come to the decision of placing a feeding tube, since Audree was not eating because of her high respiratory rate. At this point, Dr. Nandu kept staring at her monitor. We could see his gears turning and he asked the nurse what Audree’s resting heart rate had been. She never really had a resting heart rate because she was so irritable, but the lowest we had seen it was 178. Dr. Nandu talked to us about his concern that the heart rate was too high and the need for an Echocardiogram and an EKG. He walked us through the steps for these procedures then left the room to schedule them. No sooner than he walked out did we hear him ask the ECHO tech what he was doing on the floor! (WOW GOD!!) Within an hour, the ECHO was complete and Dr. Nandu came in with the news that changed our world.
AUDREE HAS A CONDITION CALLED DILATED CARDIOMYOPATHY likely caused by a virus that was attacking her heart. Basically, the left side of her heart is twice its normal size and only works at less than 50%.
At this point he explained that the cardiologist would be in to discuss this condition and the steps that we would need to take. We spent the next 4 days in the ICU, weaning Audree off of the high flow nasal cannula, starting her on heart medications and coming to terms that our baby girl’s heart was not working properly and we would be working closely with her cardiologist for the next year to get her heart working again. During this time, the PICU staff at BSA took such good care of us. They went above and beyond to make sure Audree was comfortable, that Mark and I were taken care of, and that we understood every aspect of Audree’s care and medications. On Wednesday, October 12, 2011 we were discharged from the PICU with follow-ups scheduled with our pediatrician and cardiologist that next week.
On Friday, October 14, 2011 we began to notice that Audree was not eating well again and was struggling to breathe. So we headed back up to the ER. Late that night we were once again admitted to the PICU. At this point Audree’s new cardiologist Dr Q. (partners with the initial cardiologist) and Dr. Nandu began to have new ECHOs and EKGs done. Dr Q discussed with us the need for an angiogram (catheterization of the heart) to locate the end point of Audree’s right coronary artery. The plan was to send us to Lubbock for the procedure.
On Sunday, October 16, after Audree had been eating well again and her breathing was back under control, we were discharged from the PICU. Once we got home we sat down to eat lunch with Papa, Grammy, Marky and Avaree. After a relaxing meal and some down time, Grammy handed us a check from some dear friends. We were shocked/humbled/grateful/blessed by their generosity!! WITHIN AN HOUR, Dr. Q. called and told us that instead of going to Lubbock, we needed to get Audree to Children’s Medical Center in Dallas ASAP. He did not want her driving, so he had arranged for a medical flight to Dallas.
On Monday October 17, 2011, Audree and I were going to fly to Dallas in the medical plane, while Mark drove down. That morning the flight was delayed from 8:00 am until 2:00pm! Once we arrived at the hospital, we learned that the plane was still in Omaha and would have to go back to Dallas before coming back to Amarillo… the flight would not be available until 6:00pm! Fortunately there was a local crew APOLLO who would be able to fly me and Audree to Dallas within 30 minutes! AND MARK was also able to fly too!!!! (WOW GOD!!) The ambulance crew and the APOLLO crew were absolutely awesome and took such good care of us!
Monday was a pretty rough day, but NOTHING could have prepared us for Tuesday…. the day our world was shattered and our foundations were shaken to their cores.
On Tuesday, October 18, Audree had another ECHO done. Later that day, Dr. Mahony came in to discuss the results with us. She told us that after reviewing all of Audree’s history and tests they had come to the conclusion that Audree’s dilated cardiomyopathy was a congenital heart condition. She explained that often the cases of cardiomyopathy that were caused by a virus would heal with medications over time. The likelihood of congenital cardiomyopathy healing is very unlikely and we would need to begin looking at the long term need for a heart transplant. We would continue to hope and pray that the medications might heal her heart, but we were to prepare for the very likely chance that it would not. This news sent our hearts plummeting and our minds racing.She also discussed the need to have me, Mark and the older children checked for this condition! Thankfully, all of our tests came back normal! This condition seems to be unique to Audree and not genetic.
We spent the rest of the day processing the news and doing more blood work and the first of many many tests to come.
Initially, the Cardiologists thought we were looking at a 6-8 week time frame to determine if the new regiment of medications that Audree was taking would in fact begin to “fix” her heart. However, after meeting with the transplant team and going through the transplant evaluation, it was determined that Audree would not make it out of her toddler years without the heart transplant. Audree was placed on the heart transplant waiting list on November 10, 2011. Now, Audree and I are living in the Dallas area until she receives a new heart; while Mark, Marky, and Avaree are working, going to school, and living in the Amarillo area- visiting us mainly on the weekendsAs the months passed, we began adjusting to our new lives. I would take Audree, every Thursday, to the Solid Organ Transplant department at Children’s Medical Center Dallas. There the transplant team would monitor her heart function, her medication levels, her weight, etc. We absolutely love our transplant team! They quickly became another part of our extended “family” and a vital support system for us as well – celebrating Audree’s triumphs along with us (each ounce that she gained was a huge accomplishment), encouraging me when I had those moments of fear, and supporting us as a family when we had some tough decisions to make. During this time, we all became well versed in feeding tubes, EKGs, lab work, daily medication regimens, and the signs of symptoms of worsening heart failure. We also made some wonderful friends while we stayed at the Ronald McDonald House of Dallas, who become part of our ever growing extended “family” and support network. Our lives were not what we had always imaged, but we were adjusting to our “new normal” and focusing on God’s will for Audree and for our entire family. Still, there were times when we would become restless with our situation, the strain of living in two separate towns, with our family split apart, and we would wonder how much longer we could manage. Were we right to keep our children separated? Had we made the right choices? There were also times when we would watch and celebrate with our friends as they received their heart miracles and despite our happiness for them, we would find ourselves thinking… “When is it our turn?” or “God, we’re still here… waiting.” We also experienced those horrible moments as our dear friends lost their children; and our grief for them would at times allow fear to coil up in the bottom of our hearts. But in those darkest moments, when despair would try to set in, God always came through. He would speak to the heart of a stranger or a dear friend, who would feel the “urge” to send us an email with a word of encouragement or call us with a word from God. We also had the gift of being able to look back at the path that God had brought us down and see without a doubt, that even during my pregnancy with Audree, God had opened up a door, that led us down a path, that opened up another door… that resulted in us being in exactly the right place, at the right time for Audree and her unique situation. We have truly come to know the meaning of Isaiah 55:8 & 9 “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than yours.” And the importance of Psalm 27:14 “Wait for the Lord. Be strong and let your heart take courage. Yes, wait for the Lord.”In February 2012, I came across some information about research being conducted by a doctor in Chicago, wherein he was studying the effectiveness of using a child’s own stem cells to treat their cardiomyopathy. After spending several weeks searching for this doctor, I discovered that he had moved to John Hopkins in Maryland and started trying to contact him. On May 7, 2012 his office contacted me! They told me that Dr. Kaushal was months away from having FDA approval for a treatment using a child’s own bone marrow stem cells to treat cardiomyopathy. Once he received the FDA approval, he wanted to meet with us and discuss the possibility of taking Audree on as a patient!
Throughout this journey we have become very aware of our limitations as human beings and as parents. However, we have also become even more resolute in our belief and knowledge that GOD is in control. Our simplest explanation for this is that we have lived it, moment by moment, day by day. He created Audree’s inmost being and knows the exact number of hairs on her head. He LOVES her even more than we do! He has a purpose for her life. We know that He gave her to us to love and to cherish each moment with her. We have laid Audree at the feet of God, knowing that He is the Great Physician. He can heal her in a miraculous way, He can use a ground breaking medical miracle to heal her, He can use the medication to heal her heart, He can heal her by giving her a new heart in the transplant process, or He can call her home to Him. Regardless of the outcome, we believe that He will carry us through. Please continue to pray for our precious girl, for us, for her big brother and sister Marky and Ava, for our extended family… her grandparents, her aunts, uncles, cousins and our friends. We are asking for THE PEACE that PASSES ALL UNDERSTANDING. We are seeking God’s will and trusting Him.
Psalm 147: 3–6 “He heals the brokenhearted and binds up their wounds. He determines the number of the stars and calls them each by name. Great is our Lord and mighty in power; his understanding has no limit. The LORD sustains the humble.”
From Mommy (Kimberly Gomez): In October of 2010, I found out that I was pregnant with baby #3! The first person I told was my husband Mark and then after a few weeks, we let our older children, Mark Aron and Avaree in on the news! They were so excited and could not wait to have a new baby brother or sister. They also couldn’t wait to tell everyone they saw! So we came up with a short poem and had Marky and Ava give it to our parents to announce the arrival date of our newest addition. At our 20 week sonogram, we were delighted to discover that we were having a baby girl. She was the picture of health and looked very similar to our older two kids. We wasted no time in picking out her name and remodeling Mommy’s office into a nursery. On June 30, 2011, Audree Rose Gomez made her debut, weighing 6lbs 8oz and measuring 19 inches in length, making the perfect addition to our family. During the hot summer months that followed, Audree spent much of her time with Mommy indoors and in the shade while her brother and sister played in the sprinklers. She loved to keep an eye on her brother and sister, as they laughed and played. They fascinated her. She even would sleep in their arms, while they took turns rocking her in Mommy’s chair. In the evenings when Daddy got off of work, he would spent hours holding Audree and enjoying the life of a proud Daddy of 3. As the days began to grow shorter and the temperatures began to drop, we looked forward to those cozy evenings in front of the fire place with our three precious children. Little did we know that in a matter of moments, our world would be shattered… our sense of stability forever shaken and our dreams forever changed.
Wednesday, October 5, 2011, began as any other day for our family. Mark and I went to work, Marky and Avaree went to school and Grammy (my Mom) kept Audree. Around noon, Mark picked Audree up and spent the afternoon and evening with his parents. After school, we took the kids to Kid’s Zone at our church and then went out to eat with Papa (my Dad). During dinner I noticed that something seemed “off” with Audree. She sounded funny when she was breathing and her cry sounded different. We decided it was a good idea to take her to the ER in Amarillo. At the ER the nurses initially were skeptical that anything was wrong with Audree. She was not running a fever and she was all smiles. However, I was insistent that something was off (THANK YOU GOD FOR THOSE NUDGES). A doctor passing through the triage area decided he would just take a quick listen… probably to pacify Momma However, after listening to Audree he told the nurses to get Audree into a room and not to allow any fluids. After running all kinds of tests and xrays (which all came back negative), the ER DR determined she had an Upper Respiratory Infection and sent us home with breathing treatments. Thursday passed with Audree sleeping alot, barely eating, and doing breathing treatments. On Friday, I returned to work and left the kids with my Aunt Aline (Thank God for Aunts and Grammy’s who are willing to watch our kids!) Around 9:30, I felt this strange sense of uneasiness and I called to check on Audree. Aunt Aline reported that she only ate 1 oz of her bottle and was sound asleep, again. I couldn’t shake the uneasiness that I was feeling and decided to check in with our Pediatricians (Thank you God for those nudges!). After hearing about Audree’s situation, they immediately told me to bring Audree in ASAP. Once we arrived at the pediatrician’s office, Audree’s oxygen saturation (O2 sats) were at 83%. After 2 breathing treatments with oxygen hooked into the mask her O2 sats had barely reached 89%. Audree was then taken to the Pediatric Intensive Care Unit (PICU) at BSA by ambulance. Audree was placed on the High Flow Nasal Cannula and watched very closely. Her heart rate ranged from 178-198 and she struggled to breathe. She had a spinal tap, blood tests, RSV, Flu tests and every other test imaginable… all coming back negative. The PICU doctor, Dr. Nandu, determined that Audree had a severe laryngotracheal bronchial infection and a urinary tract infection. He began treating her for these conditions. On Saturday, we had just come to the decision of placing a feeding tube, since Audree was not eating because of her high respiratory rate. At this point, Dr. Nandu kept staring at her monitor. We could see his gears turning and he asked the nurse what Audree’s resting heart rate had been. She never really had a resting heart rate because she was so irritable, but the lowest we had seen it was 178. Dr. Nandu talked to us about his concern that the heart rate was too high and the need for an Echocardiogram and an EKG. He walked us through the steps for these procedures then left the room to schedule them. No sooner than he walked out did we hear him ask the ECHO tech what he was doing on the floor! (WOW GOD!!) Within an hour, the ECHO was complete and Dr. Nandu came in with the news that changed our world.
AUDREE HAS A CONDITION CALLED DILATED CARDIOMYOPATHY likely caused by a virus that was attacking her heart. Basically, the left side of her heart is twice its normal size and only works at less than 50%.
At this point he explained that the cardiologist would be in to discuss this condition and the steps that we would need to take. We spent the next 4 days in the ICU, weaning Audree off of the high flow nasal cannula, starting her on heart medications and coming to terms that our baby girl’s heart was not working properly and we would be working closely with her cardiologist for the next year to get her heart working again. During this time, the PICU staff at BSA took such good care of us. They went above and beyond to make sure Audree was comfortable, that Mark and I were taken care of, and that we understood every aspect of Audree’s care and medications. On Wednesday, October 12, 2011 we were discharged from the PICU with follow-ups scheduled with our pediatrician and cardiologist that next week.
On Friday, October 14, 2011 we began to notice that Audree was not eating well again and was struggling to breathe. So we headed back up to the ER. Late that night we were once again admitted to the PICU. At this point Audree’s new cardiologist Dr Q. (partners with the initial cardiologist) and Dr. Nandu began to have new ECHOs and EKGs done. Dr Q discussed with us the need for an angiogram (catheterization of the heart) to locate the end point of Audree’s right coronary artery. The plan was to send us to Lubbock for the procedure.
On Sunday, October 16, after Audree had been eating well again and her breathing was back under control, we were discharged from the PICU. Once we got home we sat down to eat lunch with Papa, Grammy, Marky and Avaree. After a relaxing meal and some down time, Grammy handed us a check from some dear friends. We were shocked/humbled/grateful/blessed by their generosity!! WITHIN AN HOUR, Dr. Q. called and told us that instead of going to Lubbock, we needed to get Audree to Children’s Medical Center in Dallas ASAP. He did not want her driving, so he had arranged for a medical flight to Dallas.
On Monday October 17, 2011, Audree and I were going to fly to Dallas in the medical plane, while Mark drove down. That morning the flight was delayed from 8:00 am until 2:00pm! Once we arrived at the hospital, we learned that the plane was still in Omaha and would have to go back to Dallas before coming back to Amarillo… the flight would not be available until 6:00pm! Fortunately there was a local crew APOLLO who would be able to fly me and Audree to Dallas within 30 minutes! AND MARK was also able to fly too!!!! (WOW GOD!!) The ambulance crew and the APOLLO crew were absolutely awesome and took such good care of us!
Monday was a pretty rough day, but NOTHING could have prepared us for Tuesday…. the day our world was shattered and our foundations were shaken to their cores.
On Tuesday, October 18, Audree had another ECHO done. Later that day, Dr. Mahony came in to discuss the results with us. She told us that after reviewing all of Audree’s history and tests they had come to the conclusion that Audree’s dilated cardiomyopathy was a congenital heart condition. She explained that often the cases of cardiomyopathy that were caused by a virus would heal with medications over time. The likelihood of congenital cardiomyopathy healing is very unlikely and we would need to begin looking at the long term need for a heart transplant. We would continue to hope and pray that the medications might heal her heart, but we were to prepare for the very likely chance that it would not. This news sent our hearts plummeting and our minds racing.She also discussed the need to have me, Mark and the older children checked for this condition! Thankfully, all of our tests came back normal! This condition seems to be unique to Audree and not genetic.
We spent the rest of the day processing the news and doing more blood work and the first of many many tests to come.
Initially, the Cardiologists thought we were looking at a 6-8 week time frame to determine if the new regiment of medications that Audree was taking would in fact begin to “fix” her heart. However, after meeting with the transplant team and going through the transplant evaluation, it was determined that Audree would not make it out of her toddler years without the heart transplant. Audree was placed on the heart transplant waiting list on November 10, 2011. Now, Audree and I are living in the Dallas area until she receives a new heart; while Mark, Marky, and Avaree are working, going to school, and living in the Amarillo area- visiting us mainly on the weekendsAs the months passed, we began adjusting to our new lives. I would take Audree, every Thursday, to the Solid Organ Transplant department at Children’s Medical Center Dallas. There the transplant team would monitor her heart function, her medication levels, her weight, etc. We absolutely love our transplant team! They quickly became another part of our extended “family” and a vital support system for us as well – celebrating Audree’s triumphs along with us (each ounce that she gained was a huge accomplishment), encouraging me when I had those moments of fear, and supporting us as a family when we had some tough decisions to make. During this time, we all became well versed in feeding tubes, EKGs, lab work, daily medication regimens, and the signs of symptoms of worsening heart failure. We also made some wonderful friends while we stayed at the Ronald McDonald House of Dallas, who become part of our ever growing extended “family” and support network. Our lives were not what we had always imaged, but we were adjusting to our “new normal” and focusing on God’s will for Audree and for our entire family. Still, there were times when we would become restless with our situation, the strain of living in two separate towns, with our family split apart, and we would wonder how much longer we could manage. Were we right to keep our children separated? Had we made the right choices? There were also times when we would watch and celebrate with our friends as they received their heart miracles and despite our happiness for them, we would find ourselves thinking… “When is it our turn?” or “God, we’re still here… waiting.” We also experienced those horrible moments as our dear friends lost their children; and our grief for them would at times allow fear to coil up in the bottom of our hearts. But in those darkest moments, when despair would try to set in, God always came through. He would speak to the heart of a stranger or a dear friend, who would feel the “urge” to send us an email with a word of encouragement or call us with a word from God. We also had the gift of being able to look back at the path that God had brought us down and see without a doubt, that even during my pregnancy with Audree, God had opened up a door, that led us down a path, that opened up another door… that resulted in us being in exactly the right place, at the right time for Audree and her unique situation. We have truly come to know the meaning of Isaiah 55:8 & 9 “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than yours.” And the importance of Psalm 27:14 “Wait for the Lord. Be strong and let your heart take courage. Yes, wait for the Lord.”In February 2012, I came across some information about research being conducted by a doctor in Chicago, wherein he was studying the effectiveness of using a child’s own stem cells to treat their cardiomyopathy. After spending several weeks searching for this doctor, I discovered that he had moved to John Hopkins in Maryland and started trying to contact him. On May 7, 2012 his office contacted me! They told me that Dr. Kaushal was months away from having FDA approval for a treatment using a child’s own bone marrow stem cells to treat cardiomyopathy. Once he received the FDA approval, he wanted to meet with us and discuss the possibility of taking Audree on as a patient!
Throughout this journey we have become very aware of our limitations as human beings and as parents. However, we have also become even more resolute in our belief and knowledge that GOD is in control. Our simplest explanation for this is that we have lived it, moment by moment, day by day. He created Audree’s inmost being and knows the exact number of hairs on her head. He LOVES her even more than we do! He has a purpose for her life. We know that He gave her to us to love and to cherish each moment with her. We have laid Audree at the feet of God, knowing that He is the Great Physician. He can heal her in a miraculous way, He can use a ground breaking medical miracle to heal her, He can use the medication to heal her heart, He can heal her by giving her a new heart in the transplant process, or He can call her home to Him. Regardless of the outcome, we believe that He will carry us through. Please continue to pray for our precious girl, for us, for her big brother and sister Marky and Ava, for our extended family… her grandparents, her aunts, uncles, cousins and our friends. We are asking for THE PEACE that PASSES ALL UNDERSTANDING. We are seeking God’s will and trusting Him.
Psalm 147: 3–6 “He heals the brokenhearted and binds up their wounds. He determines the number of the stars and calls them each by name. Great is our Lord and mighty in power; his understanding has no limit. The LORD sustains the humble.”
