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  • Writer's pictureApple HMS

Ash - Apple Pick of the Month

Ash's journey started even before birth. In 2018, on the day of my first infertility consult, I found out that I was already pregnant. Moreover, we found out that we were having Monochorionic Monoamniotic (MoMo) twins! We were told this type of twin pregnancy was dangerous due to the shared placenta and amniotic sac. MoMo twins (if they survive) are delivered by mandatory c-section between 32-33 weeks because it is "safer out than in" for them. The medical staff gave us two options: pregnancy reduction (get rid of one) or complete termination of the pregnancy. However, my husband, Joey, and I saw their strong heartbeats and decided to have faith in the two little lions growing inside me. So, we proceeded with the pregnancy. There was nothing we could do to prevent the deadly risks until viability at 24 weeks, so we were monitored weekly until I went inpatient at viability.

At our 16-week anatomy scan, I knew something was wrong with Baby B's heart the second I saw it. His twin's heart was normal, but B's heart was very different. We were overjoyed to find out they were boys, but we were told Baby B would probably not make it even if he survived the pregnancy. We were offered pregnancy reduction again since "a medical defect of this sort would be hard on [our] family." Again, my husband and I decided to have faith in our boys, so we were transferred to Texas Children's Hospital (TCH) in Houston, 4 hours away from home, on January 2, 2019.

On February 3, 2019 at 27 weeks, I went into preterm labor and Rhys William Wright (Baby A) was born weighing 2 pounds, 10 ounces. Then, I heard the loudest cry of the two; almost like a roar. Ash Donovan Wright (Baby B) announced himself to the room as a fighter weighing in at only 2 pounds, 4 ounces! (Side note: Both their first names mean "Happy" and their middle names mean "Warrior". We chose these names because we knew many of the struggles they'd face.)

At each and every turn, Ash showed us and the medical staff just how brave, ferocious, and battle ready he was. No one expected Ash to make it through the first few days, but he stayed stable. Then, they didn't think he'd grow enough for Cath interventions. He grew, despite his various health conditions, and has had 3 stents placed during various Cath procedures. He still has not had open heart surgery yet, but he's always done things at his own pace. Next, they were concerned that he'd never make it out of the hospital. He spent 10 months exactly between NICU IV and the CVICU at TCH. On December 3rd, 2019, Ash was discharged from the CVICU and we started our outpatient journey at Project Joy & Hope since we couldn't go home just yet. We still have to stay local to TCH until Ash tells us one of three things: 1.) that he's ready for and qualifies for his Glenn open heart surgery, 2.) that he needs to be listed for transplant if he doesn't qualify for the Glenn, or 3.) that he can't do either. We should find out in about a month what the cardiologists think since he's scheduled for a diagnostic Cath soon.

Ash is a CHD baby with Complex Single Ventricle. He presents as a Hypoplastic Right Heart, but with more defects involved than a standard hypoplast. For instance, his right and left ventricle swapped sides due to another condition! He also has severe hypoglycemia, pulmonary hypertension, and Heterotaxy Syndrome with Asplenia, which means his insides are somewhat jumbled (i.e. his heart, liver, and intestines) or missing (i.e. his spleen, meaning he has no way to fight infection). Ash also still deals with issues that stem from being a micro preemie (though with those rolls and chins, you'd never know it). He also was diagnosed with Tracheobronchomalacia, but we're finally on HME trials and weaning off the vent at lightning speed!

If you haven't guessed by now, what makes our Ash such a special boy is the fact that he has determination, strength, motivation, and an endless reservoir of happiness despite everything he's endured in his first year. Ash has quite the stubborn streak too. No matter what challenges he is faced with, he overcomes them at his pace and no one else's. This boy always does things how and when he wants to, which almost never aligns with the medical staff's idea of timing or protocol. And, because of Ash's love for taking his time and doing things his way, my husband and I have learned how to advocate for Ash's needs this past year; a huge feat for someone as introverted as myself.

My husband and I are happy that we never doubted our boys and their ability to overcome adversity, especially Ash. I never got the chance to embrace my pregnancy or the first year of motherhood, but I received something more valuable: I am a better mother, advocate, and spouse than I would have been otherwise. I have an appreciation for milestones that many may take for granted. Just recently, I was finally able to put Ash on my hip and walk around our Houston residence with ease. Something as normal as carrying a baby on my hip feels magical, and I wouldn't trade that feeling for anything. In the past year, Ash has taught us to recognize beauty in ordinary moments and to have faith in the midst of what seems like insurmountable odds. He's our impossible little lion.

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