A Mother’s Worst Nightmare :: Blake’s Story {Part 1}

Certain dates in life you won’t ever forget – birthdays and wedding anniversaries, to name a few. But what about the terrible dates in life? November 4, 2016 is one I will never, ever forget. Our son Blake had just hit the 3 month mark. No longer a newborn, now an infant who was becoming more alert and turning into a tiny human being. He had spent a few weeks in the NICU after being born at 36 weeks. Heart decelerations during contractions caused him to use up his sugar reserves, leaving his glucose levels low when he was born. Once these became regulated, he became a “grower and feeder,” until he was discharged at four weeks old, on a medication to help regulate those blood sugar levels. We were getting in a groove, and his glucose levels were within normal range.  As he grew, the endocrinologist naturally increased the dosage to adjust to his size. At our 12 week check-up with endocrinology, the doctor was thrilled with his progress and told us that his next step was to outgrow the medication. All seemed to be going well … until all of a sudden it wasn’t.  Not at all.

Leading up to that day last November, our sweet boy definitely didn’t seem like himself.  Trips to the pediatrician came back with seasonal allergies; his lungs sounded fine and his pulse/oxygen level was near perfect. But something wasn’t right. All of a sudden he wasn’t making eye contact or tracking noises, and he had only smiled once.  To say I was on alert for milestones was an understatement. But, he was four weeks early and spent those weeks in the NICU, so his delays were to be expected, right? 

I could tell myself he was a little delayed all day and night, until he woke up one morning and my motherly instinct went into high gear. {I am a FIRM believer in it}.  I thought he had a seizure – his eyes were nearly rolled back, his face was very pale with “gunk” coming out of his nose, and his head seemed the size of a bowling ball.  I told my husband I wanted to take him straight to the ER; but let’s be honest, I was in no condition to drive anyone anywhere.  Our pediatrician encouraged us to come see him first; the best case scenario was something he could treat, worst case was he could hurry us through the wait at the ER by calling in.  Unfortunately, the latter was our story, and we got back into the car heading to the ER. When we got to there, it was an out of body experience.  Truly, it felt like an episode of Grey’s Anatomy. We walked in, baby in carrier, and the receiptionist immediately knew who we were. She kindly asked us to take the baby out of the carrier, took him from my husband’s hands, and ran him straight past all the waiting families as she yelled, “I have a 3 month old who is grunting, I need a trauma room STAT.” {It was just like a medical drama on TV come to life.}  I stood there, completely immobile, as I watched my baby rushed down the hall, my husband following with the empty car seat in his hands.  I caught up as they made their way into the trauma room, with every single person who was sitting at the desk running after Blake.  I sat down on the cold floor outside the room, numb; I couldn’t even bring myself to go in there. There were so many people running in and out, I only would have been in the way.  All I wanted was to hear my baby’s cry. If he was screaming, he was breathing and we were going to be okay. 

As the morning went on, x-rays revealed his lungs were nearly completely filled with fluid. Upon discovering that, an ultrasound of his heart was ordered, which showed that his right ventricle was enlarged. Do you know what the right ventricle of the heart does? Pumps the blood to the lungs, and when the ventricle is enlarged like his was, it affects breathing. This was not RSV; this was pulmonary hypertension – in a three month old. In order to help him breathe, we were told he would need to be intubated and put on a ventilator. My whole body felt paralyzed, and it didn’t truly sink in on what that meant, until he was wheeled out of the trauma room and up to the PICU {Pediatric ICU} to be admitted. {Speaking of paralyzed, he was also given a medication to paralyze him so that his baby reflexes wouldn’t kick or jerk his fragile body around.}   There was no screaming and crying anymore, just total silence. Aside from my own personal sobs.  It was a very harsh reality to accept that our baby needed all of these things to ensure he truly rested so the doctors could do their job.

By that point, hours had gone by, yet it felt like 5 minutes and 5 days all at the same time. Did you know that there are only a handful of pediatric pulmonary hypertension teams in the nation … and that Houston has one of them? Thank goodness, because when you see your baby lifeless, you want him cared for by the BEST. These amazing doctors reviewed Blake’s file and noticed his glucose medication. The pulmonary hypertension specialist knew immediately that this condition was caused by that medicine … the very one that helped keep him going those first few weeks had now left him intubated, on a ventilator, and paralyzed.  Something that was so crucial in the first days now had our tiny baby in premature heart failure. We were reassured countless times that Blake’s lungs and heart {and all of his organs} were checked in the NICU before administering anything, and that this was an incredibly rare side effect. So rare, that the endocrinologist told us Blake was case number 16 reported to the FDA since 1970.  Not really the statistic we wanted to be, even when being told that this would be completely reversible with no long term affects on his little body…

Check back tomorrow for Part 2 of Blake’s Story. 

About Edie E.

Edie is a true Southerner, born and raised in Memphis, Tennessee. After graduating from The University of Texas, she moved around while teaching and working on her Masters in Education. A teaching job brought her back to Texas, where she met her native Houstonian husband. Seven years later, this first grade teacher turned mama to Sophie Laine {4} and Blake Elliot {16 months} loves being “mamarazzi” to her littles, cooking, attempting to be crafty, keeping her toes wet in the educational field, spinning, all things southern {smocked clothes, monograms, mason jars, football}, laughing with friends, and making memories with her family.


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