Author: Tamara French-Salmon, bereaved mother of Aubree Salmon
It was our second year of marriage and we had been trying to conceive for a year. There were many roadblocks along the way: Polycystic Ovarian Syndrome, blocked fallopian tubes and even conflicting work schedules. But in late September of 2017, after much prayer, we finally received our miracle--Raheem & I were pregnant! The first 20 weeks of pregnancy were rather uneventful, aside from the usual suspects of acid reflux, frequent urination and fatigue. After learning the gender and much debate, my husband and I decided on the name Aubree Elise. We felt on top of the world! However, at our 20-week ultrasound our feelings of sheer joy became clouded with fear and uneasiness. Our precious little blessing was diagnosed with Duodenal Atresia, a congenital closure of the duodenum - an upper portion of the small intestine. The next 14 weeks were a whirlwind filled with regular prenatal appointments as well as twice a week visits to a Perinatologist for level 2 ultrasounds. With each ultrasound there came a mixed bag of emotions. On one hand I literally got to see my baby grow inch by inch, on the other hand every ultrasound also brought a chance that the increased levels of amniotic fluid (a result of duodenal atresia) were hindering Aubree’s growth. At any moment my uterus, which was supposed to be a safe haven for our love to develop, could become so flooded that there would be no option other than preterm labor. In the midst of the many doctor’s visits we still had to develop a post-birth plan. The doctors, my husband and I developed the plan that immediately following Aubree’s birth in Newnan, GA she would be transferred to Children’s Healthcare of Atlanta’s (CHOA) NICU on their Scottish Rite campus to prepare to have her duodenal atresia repaired. We met with the transport team, perinatal doctors, and her future surgeon. We had a plan. However, as Robert Burns wrote, “The best-laid plans of mice and men often go awry”.
At 34 weeks pregnant, I went in for one of my perinatal ultrasounds and things were bad from the start. For the first time in my pregnancy, my blood pressure was elevated. My amniotic fluid had increased and Aubree had not grown. It was time! Without any warning and no preparation (my baby shower and subsequent “go bag” preparation was scheduled for that weekend) we were instructed to go directly across the street to the hospital to be admitted. An induced preterm labor was scheduled. Luckily, and despite her living conditions, Aubree was showing no signs of distress so my doctor decided to delay the induction in an effort to get my vitals under control and hopefully delay labor. This highly stressful situation had the opposite effect on my blood pressure, so the next day I began taking induction medication. Well, I assume Aubree was not pleased with losing the proverbial swimming pool she had been in for seven months because once my water broke, her heart rate plummeted. In an instant my room was filled with hospital personnel, I was strapped to oxygen, my husband and mother were both gowning up and I was told that a Cesarean Section was imminent and inevitable. The C-section was uneventful and through my mother’s glasses (since they made me remove my contacts and in our unpreparedness, I didn’t have my glasses) I laid eyes on the most beautiful 2 lbs & 15 ounces I had ever seen. Sadly, just as quickly as she was removed from my womb she was also removed from the room because remember we had a plan and CHOA Transport was en route. After what seemed like an eternity to regain feeling in my lower limbs, CHOA transport waited just long enough for me to get a quick glimpse of my girl inside her transport incubator. My husband stayed with me and my parents and brother followed our precious cargo as, at 3 hours old, she took her first trip to her new NICU hospital home over 1 hour away. We were reunited 3 days later and I finally got to hold my baby girl in my arms along with oxygen tubes, feeding tubes and a disgusting Replogle tube. Her surgery was scheduled for two days later. Her duodenal atresia repair was deemed a success and her prognosis was good. The only goal we were given while in the NICU was to gain weight. Easy, right?
For two months Aubree made great strides and gained weight steadily while being fed through a GI feeding tube. I pumped and she ate. That was our routine. Aubree was not a fan of breast-feeding and her sporadic labored breathing made it difficult to bottle feed without aspirating. Although I couldn’t sleep there, I lived in that NICU mom rocker. My husband & I took all required NICU parent courses and after 2.5 months, Aubree finally gained enough weight to be given a release date. And then it happened. Only this time it wasn’t the way they depict in romantic comedies. Aubree’s heart skipped a beat. Everyone reassured us that it was probably nothing and a common occurrence amongst preemies. However, to be safe, she was connected to an EKG machine and her heart rhythm was monitored overnight. Despite having a room at the nearby Ronald McDonald house, I sat in that Mom rocker-chair all night and prayed. The next morning, we received the news that there was an issue with her heart and instead of going home we were going to be immediately transported to CHOA’s cardiac unit at their Egleston (Emory) campus for more in-depth testing. Despite the anxiety we felt for those nearly 3 months in the NICU, this was when the nightmare really began. After numerous tests, it was discovered that Aubree had a small VSD (ventricular septal defect) hole in her heart. In order to get an accurate reading on the severity of the VSD she would need to undergo another surgical procedure: a cardiac catheterization. Based on the results, we were assured that her VSD was minor and as she gained weight it would close. With that reassurance we finally headed home.
Bringing Aubree home was nothing like we imagined and the most stressed I have ever felt in my life. Although, I was a VERY hands-on NICU and CICU mom I was still nervous about not having a nurse 1-button push away. Each day was filled with endless medicine, every hour feeding schedule for tube feedings, twice a week outpatient cardiac appointment an hour away, horrible reflux episodes and NO SLEEP for Mama & Daddy. Not because she was a fussy baby (because she wasn’t) but because I was terrified. She had a pulse oximeter and an Owlet monitor and I STILL hear those alert beeps in my sleep. I think I called the NICU/CICU emergency nurse at least twice a day. After being home for two weeks, things started to level off and we had finally established some semblance of a routine. We went in for our scheduled cardiac appointment and Aubree’s breathing was extremely labored and the doctor’s pulse oximeter could not get a reading above 72% no matter the extremity. We were headed back to CHOA-CICU. I hate to admit this, but I was secretly relieved because my mother’s intuition knew for the entirety of our two weeks at home that something was wrong. Upon our arrival Aubree was immediately scheduled for another cardiac catherization and the results turned our world upside down. Her VSD was no longer minor. Instead of closing with weight gain it actually increased in size. There was also evidence that she had a very rare and serious condition known as Pulmonary Vein Stenosis (PVS). PVS is an abnormal thickening of the walls of the veins causing a blockage in the blood vessels that bring oxygenated blood from the lungs back to the heart. While children with mild cases often live long lives, the rate at which Aubree’s developed indicated that her PVS was severe and comes with little to no intervention options, a poor prognosis and high mortality rate. I cried and I prayed, then I cried some more. Not my baby, not my Aubree. She would NOT be one of their statistics.
I began to research, utilizing all of the journal subscriptions my B.S. in Molecular Biology and career as a Science teacher afforded me. We were blessed to be in a facility and surrounded by some of the sweetest, most supportive nurses and doctors I have ever had the privilege to encounter, many of whom to this day I still consider friends. They thought, they fought, and they exhausted all resources and research/trial options. Aubree’s personality was tenacious. She was bubbly and full of attitude and life. All that met her fell in love and because of her magnetic personality, she became the CICU’s baby. I would often arrive to find nurses and doctors in her room talking with her, having an impromptu photoshoots, watching her favorite Peppa Pig or letting have her way with a water-soaked foam “lollipop”. For 6 months we lived in the CICU. I made sure that her room was decorated for every season/holiday, her hair was combed and she got “dressed” daily. My mom sewed hospital crib sized sheets, satin pillowcases and modified all of her clothing to make her plethora of tubes and wires accessible. In spite of the 12 cardiac catherizations, countless desaturation episodes, recurrent Klebsiella infections and spontaneous fevers, my motto was always, “Keep her happy and Keep her Cute” and that is what we did. The doctor’s even managed to always have her extubated within a day of each cardiac cath procedure. I think subconsciously I decided to ignore our situation and location and simply focus on Aubree. That was working, until it wasn’t. Aubree had a habit of desatting on the monitor, but presenting with no issues then inexplicably satting in the high 90’s-we called it “Pulling an Aubree”. For that reason and because she was a ham, that kind of had a fan club, she developed a team of nurses that we affectionately dubbed “Aubree’s Squad” and ONLY members of Aubree’s Squad took care of Aubree because they “knew” her. Then one evening, one of the Aubree squad nurses and doctor became very concerned because each time Aubree “pulled an Aubree” it would take her longer to recover. After another heart cath and testing it was discovered that due to the increasing amount of oxygen support needed Aubree had now also developed Chronic lung disease. Her body was giving out and there was nothing more that CHOA could do for her. After consulting with pulmonologists and cardiologists around the country, Aubree’s case was accepted by Texas Children’s Hospital in Houston, Texas and, if I accepted, she would be transported the following day. This was our Hail Mary and I said yes.
After a very tearful goodbye to our “family” at CHOA, Aubree was intubated, then she and I were loaded up on a transport flight to Texas. Unfortunately, the happy baby that left Atlanta was NOT the baby that arrived in Texas. The in-flight pressure changes wreaked havoc on Aubree’s very fragile heart and delicate lungs. My happy, personality-filled baby was never the same. While they were the top doctors and nurses in the nation, they didn’t know Aubree. They didn’t trust my opinions and pulling an Aubree was no longer a thing. I knew that everything they were doing was for her safety and well-being, but that didn’t make seeing my 8 month old baby strapped down to an adult-sized hospital bed with intubation tape covering her entire face any easier. The doctor that admitted her even said, “This is not the baby we thought we were getting and Mom this is going to be a long night. It will be a miracle if she makes it to tomorrow.” What? I was just holding her and watching Peppa Pig less than 12 hours earlier. Was this a mistake? Did I make the wrong decision? My family had not yet arrived and Aubree and I were alone so I couldn’t lose it, I couldn’t break down. I had to help her fight. They wanted to rush a heart catherization for the following morning, I knew that she was too weak for that. I begged and pleaded that they simply give her 24 hours. I knew my girl, I had seen her bounce back before. She just needed time. After many hallway conversations and doctors trying to disregard my opinion, they agreed. I held her hand all night, sang and prayed. She got stronger, vitals improved and 24 hours later she was starting to look more like herself again. When the doctors came by for morning rounds they were astonished. Was this the same baby? It was. THIS was Aubree Elise Salmon. She was strong and her mama was fierce, so let’s do this. Over the next 2 months we met and discussed her case and she had multiple cardiac catherizations. It was always the same answer, we don’t know if there is anything we can do. I was given two options, prolong her life or maximize her quality of life. I reluctantly chose the latter.
As a result, Aubree was scheduled to have a trach placed to hopefully get her off of the intubation merry-go-round – she was intubated and extubated about 8 times while in Texas. Since she was already on the OR schedule, they also decided to do a repair to her GJ port that had become prolapsed. I never saw my baby’s eyes again. Once she was in the OR they discovered the the GJ port needed to be fully replaced and due to the length of the procedure her trach was not placed, but this unscheduled port replacement would inevitably be the beginning of Aubree’s end. After two days of recovery Aubree developed a nasty Klebsiella infection at the GJ site and her body’s increased immunosuppressant reaction added to the workload of her heart and 1 by 1 her organs began to shut down. It was time to make the most difficult decision of my life, to let my baby go be with God in peace. I asked for the chaplain and we had a baptism ceremony. A larger bed was brought in and I was allowed to sleep in the bed with her for the final time. As I lay my head on her chest that night, I could hear her tiny little body struggling. Her lungs sounded like a wet and crumpled paper bag with every mechanically-assisted breath she took. I always told the doctors that Aubree would let me know when she was done. It became clear that night: If I loved her, I had to let her go. The next morning the family helped me prepare her for her transition. I washed and styled her hair, painted her nails and dressed her in a blue velvet dress that I was saving for her discharge. My father went and got the doctor, we were ready. I got back into the bed and she was placed into my arms. They began taking away her support one by one. First, the in-room monitors were turned off, the paralytic was removed, the oxygen was turned off and finally she was extubated. Aubree never took another breath. The baby we worked for, the baby we prayed for, the baby we loved was gone.
On May 4, 2019 at 3pm, Aubree Elise Salmon left us here on Earth. I cried, I wept but most of all I got to hold her without any tubes, no monitors and no restrictions for the very first time as she took her final breath. I will never be the same. I lost the biggest part of me on that day. I didn’t cry much at her funeral or during the week leading up as I made the arrangements. The funeral was for us, Aubree was already gone and she was where she deserved to be-Heaven. She was too good for Earth. She told us everything we needed to know without being able to say a word. She was pure, she was love, she was better than us. I will continue to honor her legacy by working as an advocate to find a cure for Pulmonary Vein Stenosis. I will not cease until I know that no other mother will have to witness this chronic disease slowly take their child away. I am a bereaved mother. As my 2nd Mother’s Day approaches without the person who made me a Mother I am pained, but I am at peace. I know who I am because of Aubree, I am strong because of Aubree, I am love because of Aubree and I will always be a Mother because of Aubree Elise Salmon.
Andsheshallreign.com honors the legacy of Aubree Elise Salmon and the strength of her mother, Tamara French-Salmon. To follow Aubree's journey here on Earth, follow her page on Instagram at @aubree__elise. To learn more about Pulmonary Vein Stenosis click here https://rarediseases.info.nih.gov/diseases/4598/pulmonary-vein-stenosis.
