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, 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.
In July, we bid farewell to a retiring Dr. Gordon. Later that month, we started driving down to Florida for our vacation. We stopped by Helen Keller’s house and celebrated Namine’s birthday on the road. On our vacation, we visited Myakka State Park and the Atlanta Zoo.
In August, once we were back home, we had a real eighth birthday party for Namine. In therapy, Namine tried a roller racer for the first time. She had a dental appointment to discuss the upcoming jaw expansion and braces.
In February, we took Namine to see the Tripoli Circus.
In April, we said farewell to a retiring Dr. Denny.
In June, Namine had her dance recital. Namine’s orthopedic surgeon declared that Namine no longer needs to wear AFOs in therapy. We took Namine on a safari, courtesy of my brother and his wife. The new season of Miracle League baseball began.
In February, Namine got to meet the Brewers through the YMCA Miracle League. She mysteriously broke her wrist, but it healed rather quickly. She was fitted for a new hand-crank bike and helped in planning for a custom sport wheelchair. We all gave a presentation at Marquette University. We finished out the month with a vacation in Tennessee.
Shortly into March, Namine’s had to wear a Holter heart monitor; its results were good for the most part. She also had a bone density scan in an attempt to explain her easily broken bones, but its results were unhelpful. With newly healed bones, Namine returned to basketball and piano. She also joined a new dance group, the Milwaukee Ballet’s Tour de Force. We tried a new method of dyeing hard-boiled eggs in preparation for Easter.
In April, we celebrated Easter inside on account of the cold weather. Namine participated in her school’s state testing. She gave a presentation on one of her personal heroes and participated in a fashion show.
In May, Namine’s sport wheelchair was completed. She started a new season of baseball with the YMCA Miracle League. She performed in two recitals: ballet and piano. At the end of the month, she had an appointment with the cleft palate team.
In June, Namine had a checkup with her orthopedic doctor. A local newspaper wrote about Namine and her Tour de Force dance group. She was in a parade prior to a Brewers baseball game. She had another clinic visit to close out the month, this time with the dental team in anticipation of upcoming dental work.
In July, adaptive tennis started up again. Namine played with a wrist brace after a possible broken wrist (but which was thankfully only tennis elbow). We had a “pre-birthday” party for Namine, since we went camping on her actual birthday. We took Namine and her cousin to an American Girl sleepover and a zoo in Madison. Namine’s grandparents took her with them on their annual vacation to Florida.
In early August, Namine returned home from vacation with her grandparents. The next day, we saw them again at the annual family picnic. We also got together with the other side of the family at the state fair. About halfway through the month, Namine had her last baseball game of the season.
In September, Namine started the fifth grade. She had an electrocardiogram which revealed that her heart was still healthy. We all ran, and Namine wheeled, in the Briggs and Al’s Run & Walk. She got to try sled hockey again. Namine experienced some chest pain which turned out to be a pulled muscle, and thankfully nothing more serious. She also had more wrist pain that was merely a sprain.
In October, Tour de Force (the Milwaukee Ballet’s inclusive dance program) started a new season. Namine helped out at Zachariah’s Acres (a non-profit focused on helping people with disabilities) for their annual half marathon. Namine went trick or treating at Stein’s and bowling with Variety. She had a dental appointment in preparation for braces, as well as more arm pain that was the result of tennis elbow. We all gave a speech on accessibility at Children’s Hospital. Namine went trick or treating around our neighborhood.
In November, Namine continued building strength and speed in basketball. She went bowling again, this time with the Miracle League. We continued the process to get Namine new medical equipment. Namine had her fall ballet recital. She joined some classmates for a local movie field trip. She donated her hair to Pantene’s hair program. We reorganized Namine’s room. A local paper wrote about Namine and virtual schooling.
At the start of December, we set up a custom Advent calendar and put up the tree. Namine got a clean bill of health from her orthopedic doctor. We took Namine and her cousin on their annual American Girl trip. Namine played in a Christmas piano recital. She had four teeth extracted in preparation for getting braces. We celebrated Christmas with both sides of the family. In closing out the year, we saw the Milwaukee Ballet’s performance of The Nutcracker. Namine was also able to return to basketball.
In January, Namine started attending a second school to supplement her education with the RVA. She had a dental checkup to follow up her teeth extraction. She also got to try out wheelchair soccer, thanks to the YMCA Miracle League.