Namine 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 an inguinal 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.
Despite having thought that Namine would need to wear the palate prosthetic for some time, but her speech therapist told us that she was starting to speak better without it. When she was tested later by the speech pathologist, he agreed.
We started out the year trying Namine out on potty training. There was never much we could do to persuade her, but once she got it in her head to do so, she really showed improvement. She still wears diapers at night, but she wears “big girl undies” during the day.
Namine has shown incredible progress in physical therapy. Her feet are growing so much that we had to buy new shoes! She is walking faster and longer in her walker, even going outside. Her therapist also started her on practicing climbing into the car.
After some trouble with Namine’s IEP, we enrolled Namine in an online school. We initially started her on the Spring curriculum, but after seeing how much trouble she was having, we requested the Fall curriculum and started the year from the beginning. Despite that, she showed amazing progress in school, quickly grasping concepts and even passing her assessment with flying colors. She loves to read and to be read to.
In September, Namine had a partial frenectomy, clipping the webbing under her tongue. This allowed her tongue more movement and allowed her to enunciate more clearly.
Early in the year, Namine got a new bed. Although she didn’t outgrow her old mattress length-wise, it was definitely time for an upgrade.
Never one to turn down the chance at new experiences, Namine tried rock climbing on a field trip for school. It turned out to be not only difficult, but actually painful in the way the harness fit her. She hasn’t completely written it off, though; she wants to try again after she’s grown some more.
We went to the Tripoli Shrine Circus and had a grand time.
We discussed some upcoming dental procedures with Namine’s dentist. She will soon (probably in 2017 or 2018) need an upper and lower palatal expander in order to make room for her adult teeth. This does not, contrary to our previous understanding, involve a surgical procedure. It’s closer to what was required for Namine’s palatal lift prosthesis, in that it will be attached to her teeth, and not to bone, the way her mandibular distractors were.
Namine fell on her head and suffered a concussion, but fortunately nothing was bleeding or broken.
In June, We attended Jessica’s cousin’s wedding. We also got a chance to go swimming while at the hotel. Namine got a new cardiologist, her third. (Hopefully this one will stick around for a while.) She started basketball camp, which she still attends and adores.
In August, Namine celebrated her birthday with a tea party and a bee party. We attended the yearly Eiche family picnic. Namine was fitted for her Make A Wish dress. We attended Namine’s school orientation.
Namine dressed as a vampire for Halloween.
At the end of February, Namine broke her leg.
In April, we went to see the circus again. Now that her leg was healed, Namine returned to dance practice. Our plans to vacation in Florida, however, were cancelled due to complications from her broken leg. Namine got to try sled hockey and loved it.
In May, Namine had her yearly literary assessment. She got to visit Miller Stadium twice in a week. We rearranged the kitchen to allow Namine more independence in cooking. Namine wrote a speech on a coat of arms, presenting it to her classmates. We met with Namine’s doctors to discuss possible jaw surgeries.