Namine Olivia Eiche – Born July 15, 2008
Namine (pronounced “nah-me-nay”) Olivia
Eiche was born on July 15, 2008 with a double-inlet left ventricle heart
defect; Pierre Robin sequence, a condition that resulted in a regressed
jaw and a partial (U-shaped) cleft palate; caudal regression syndrome
(also known as sacral agenesis), which damages the growth of the
tailbone and legs, also giving her clubfoot; and scoliosis.
Namine was rushed to the neonatal ICU (NICU) immediately after birth. I still remember it with near-perfect clarity. She couldn’t breathe on her own, so she needed to be intubated. Her cleft palate meant that she couldn’t feed on her own, either.
Namine had her first heart surgery two weeks later: a modified Norwood. She had a tracheostomy and gastrointestinal feeding tube (g-tube), enabling the doctors to take some of the tubes out. Learning to care for the trache and g-tube was terrifying, but once we got used to it, it became routine. It helped that my wife and I were there for each other.
In January of 2009, Namine had her second heart surgery – the first of two open heart surgeries, the Glenn. At the end of the year, she had another surgery: the mandibular distraction.
In June of 2010, Namine had a cleft palate closure. The surgeon was able to do a double-sided, airtight closure, meaning there were no holes or leaks anywhere by the time he finished. He told us after the fact that he didn’t think, prior to surgery, that he would be able to do that. He was pleasantly surprised.
Namine had her sleep study – the one prior to decannulation – a month early. She was scheduled for September 9, 2010, but the sleep center had a cancellation and fit her in on August 12. She passed the sleep study, and was successfully decannulated.
In October, Namine had two surgeries. First, her stoma (the hole left from where her tracheostomy was) was closed because it wasn’t healing on its own. Second, her clubfoot was partially repaired (or so we thought). Her feet would not rotate completely to the correct position, so she needed further corrective casting. We were quite happy when Namine’s casts were finally able to come off. The splints were much easier for her to deal with.
In May of 2011, Namine had surgery to close a hernia. The hernia was suspected to be caused by her caudal regression. As such, the nature of the hernia led doctors to believe that mesh would need to used to close it up, as the muscle would not have been formed in the first place. But when they opened her up, they found a surprise: the muscle was all there, but it was not attached. That made the procedure much easier, with the added benefit of requiring no artificial mesh.
In May of 2012, Namine had foot surgery again, in order to correct the mistakes made during the first foot surgery. This led to complications – and before the end, she was in danger of losing her foot. After all was said and done, Namine was stable with a vein graft. Looking back, it was probably the most terrifying moment of my parenthood, save for the day of her birth.
A couple months later, Namine had to have a skin graft on her foot to replace the artificial skin they had originally used in her foot surgery.
In April of 2013, Namine had another bronchoscopy to check her airway and dental work to fix some cavities. The reason for the bronch was to confirm that clipping her frenulum was a bad idea, which it took the speech pathologist some time to believe.
In the interest of improving Namine’s speech, her plastic surgeon (the same one who performed the palate repair and jaw distraction) recommended one of two options: surgically extending her palate or getting a palatal lift prosthesis. We opted for the prosthesis. To that end, Namine had to be fitted for omega loops, which the prosthesis would hook onto in order to be held in place.
In August, Namine had a successful fenestrated Fontan procedure to complete the three-stage heart repair. She came home just shy of two weeks, far below the originally predicted 3-6 weeks of hospitalization (albeit after some unfortunate complications with her chest incision).
In October, after the complications with everything related to her heart surgery finally settled, Namine finally got her palate prosthesis. It took her some time to adjust to it; it caused her to gag and even throw up pretty consistently for a while. But now she is comfortable wearing it, even enthusiastic about having it put in.