Respiratory Disorders - Asher's Story

Early in my pregnancy with my 3rd child, I found out I had subchorionic hematomas, Placenta Previa, Placenta Accreta (which in the end was a Placenta Percreta and a whole other slew of complications for me) as well as the loss of Asher’s twin. Early on March 25, 2010, I passed out in the bathroom, bleeding and was rushed to Mercy. Once at the hospital, they found Asher’s heartbeat. Once the ultrasound tech arrived we found that my placenta had abrupted. Ash was born at 8:09am, 2lb 1.8oz, barely 13 inches, eyes still fused, bruised from head to toe, translucent skin and being a micro-preemie, he was in grave danger.

Asher’s due date was July 5, 2010. We spent 88 days in the NICU. Asher had all the common micro-preemie issues, many rounds of phototherapy, mild ROP, growth and temperature issues. Asher also had a PDA and Ventricular septal defect (VSD) and went through 3 rounds of meds to try to close his PDA, to no avail. We had to find that balance between having 2 little ones at home and feeling like we were there to support Ash. Asher was on the HFOV for 22 days, Switched to Dragger vent on 4/16/10, which meant on 4/17/10 I got to finally kangaroo hold him for the first time! On 4/29/10 Ash was switched to Vapotherm where he stayed for a month. After that he was switched to wall oxygen – ½ liters. This is where Asher stayed till August of 2011.

Repertory issues were Asher’s major setback not only in the NICU but also after. During his NICU stay he had an absurd amount of surfactant treatments. Those days were hard. Never knowing. He spent so much time on the HFOV that his lungs were more scarring than normal. When he finally came home, concentrators, tanks upon tanks of O2, tubing, monitors and medications, accompanied him. This became our life. He was at a huge risk for any infection with his weakened lungs, and those in turn hindered his ability to gain weight, and wean off the oxygen. It was amazing how his brothers, then 2 and 5 adjusted. They became engaged in sanitizing, protecting the things that Asher needed, they were amazing!

We had to have PDA closure surgery in Dec 2010 because Ash failed to continue to gain weight. This caused a dip down in his level for O2, but shortly after, in Feb 2011, Ash was hospitalized for RSV.  It amazing how strange it was when we got off the O2 how hard it was to feel safe without it, and how quiet it was!  We were hospitalized for RSV in Feb 2011, even though we had been getting the RSV shots. This caused a spike up in our O2 levels to a full liter till March 2011. From that point on, he continued to be able to wean, very slowly, with his pulmonologist right by our side, till finally in August of 2011 we said good-bye to all those machines and tubes. That was a scary day. It was something we relied on, trusted, and now it was all Asher.

Asher is now 4. He has growth issues, Bronchopulmonary Dysplasia (BPD) and Chronic Lung Disease (CLD). This means we catch colds very easily; we take Claritin daily along with 3x a day Pulmacort. We have come close to going back on O2, but so far so good. The hope is that once he can start growing, his lungs will improve. We still see many doctors, worry about the slightest cold, but it’s definitely worth the battle. He is an active, crazy smart, all things car obsessed(and I mean ALL), short-stack, that has yet to let anything hold him down. 

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