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Anne's Eye's are Smiling
Welcome to Anne's CaringBridge website. We are using it to keep family & friends updated in one place; also, documenting her 'story' so she has one accurate account in the future. Anne has given her full blessing to post all details here about her condition & surgeries, knowing it may give comfort &/or a new contact to someone else dealing with the same condition. We appreciate your support, prayers, & words of hope & encouragement. Thank you for visiting.
We would prefer that any information shared on this site, not be transferred over to facebook unless done by Grady or Heidi. Thank you for respecting Anne's privacy.
In the beginning... Anne was conceived via intrauterine insemination (IUI) aided by injectable medications (Follistim-follicle stimulating hormone, & Novarel-human chorionic gonadotropins to stimulate ovulation) due to infertility. On our 3rd attempt with IUI, we received the wonderful news that we were pregnant!! At 5 weeks, our infertility doctor wanted to do an ultrasound as Grady & I were leaving the country. They saw 3 babies, but only 2 heartbeats, which isn't uncommon at only 5 weeks, but the 3rd baby & yolk sac were much smaller than the other 2. Our doctor told us not to go out & buy a minivan, that nature would probably take care of that 3rd baby. We left that appointment feeling slightly overwhelmed, but knowing we had to pray that all 3 babies would survive. Off to Malta we went….& man was I sick!! If Mama being sick is a good sign of the baby’s health, these 3 monkeys were going to be just fine.
We were scheduled for a c-section on November 7, 2007 (exactly 34 weeks). Because Anne’s weight dropped to be more than 10% less than the other 2 monkeys, Dr. Mandsager’s team ran several tests to determine if we should deliver the week before (November 2 at 33 weeks 2 days). They decided that the extra days in utero were more important than finding out what was going on with Anne. At this point we weren’t aware of any of her challenges other than that she was small & not gaining weight.
On the morning of November 7, 2007, Abraham (baby A) was born at 10:30am, weighing in at 4lbs 5oz. As a nurse was telling Dr. Mandsager he needed to wait to pull Anne (baby B) out because she didn’t have her own minute yet, he said he was getting her out. So, she was also born at 10:30am, probably 30 seconds after Abe. Anne weighed 3lbs 11oz. Camille (baby C) came last at 10:31am, weighing 4lbs 6oz.
Thankfully, we asked my sister, Hilary Anne VanVark, to be in the delivery room with us, as she was a labor & delivery nurse & we knew they would be taking at least one baby out of the operating room right away due to space issues. Because of the weight difference concern going into delivery, we asked that she stay with Anne. Anne was named after Hilary & because she followed her after delivery, Hilary got to cut Anne’s cord, in addition to hearing all the important information. It was a pretty cool coincidence and we were happy for her to be able to assist! Looking back, there are many others we would have loved to have involved, but that just wasn't possible. So it was special to get one person in with us, as it seemed there were hundreds of doctors, nurses, & students!
While I was still on the operating table, the Neonatologist (Cary R. Murphy, MD) came in to tell us that Anne did not have an opening for her anus & that she had an extra thumb. He told us a surgeon would be down shortly to see Anne & meet with us.
Grady met with the surgeon in the NICU & the plan was to insert a repogle asap (A tube that went down her throat, through her mouth, that sucked waste from her tummy. It would need to stay in place until the colostomy was working). He would then pull out a colostomy on day 2 of Anne’s life. To be able to see Anne before surgery, we had to be in the NICU by 5:30am that morning. Grady & I were both able to hold her for a short period of time. She was just a little monkey & for perspective; her head was the size of my index finger (or a baseball).
Anne came back from surgery on a ventilator & man did she hate that thing. She threw such a fit the morning of the 10th, the doctor just took it off! She had oxygen for a few more days, but kept pulling that out too, so it was discontinued. Anne was jaundice & had to do phototherapy, you can probably guess how well that went. She hated that mask! If she wasn’t pulling it down, she was pushing it up, so she only did the therapy for 4 days, ending on November 13.
November 13 proved to be a big day for Anne: · The repogle was discontinued · Anne got to eat for the first time (5mL every 6hrs via ng-tube) · Anne had her 1st bowel movement that evening & everything went into her colostomy bag!
Prior to Anne’s second surgery, we figured out that she had a fistula that was opening into her vagina (so stool was coming out of her vagina). This is not entirely uncommon for girls with an imperforate anus & it would be fixed in her 2nd surgery in February 2008. We refer to this surgery as her creation surgery. This is when they created her anus. At the time, I felt the week of inpatient hospital recovery was the hardest time I had ever endured. She was so small & in so much pain. Plus, we were still dealing with the colostomy bag. From February to May, we worked on dilating her anus, keeping the integrity of her skin around the stomas & colostomy, and making her as comfortable as possible. In May, Anne had the take-down surgery for the colostomy. She did very well with this surgery & her body started functioning normally very quickly. It was amazing! Later in 2008, we did a ‘look & see’ surgery as Anne was having some hiccups in her stooling. We were concerned that there may be other fistulas, but everything was fine.
In August 2008, Anne had her extra thumb removed. The thumb removed was a full thumb with bone. The remaining thumb is also a full thumb, although neither would function ‘normal’. The top joint is fused, so it does not bend. We were told she would have gripping issues her whole life because of this. Any of you that know Anne know that this is not the case as she is the pull-up queen! But frankly, we were told she would never hold a cup in that hand & would never carry an instrument in the band. As many kids that are born with difference do, Anne adapted. She would actually hold crayons in both hands and color with them at the same time. It was crazy to watch. She can still write with both hands.
In September 2008, Anne took a bit of a spill & broke her lower leg. She was in a bright pink cast from toe to groin. We were again told that this would stop her from walking, which she was already doing. By the end of the first evening with the cast, Anne was up on it walking around. 😊
Anne endured several other surgeries that were normal for young kids over the next several years. The last big surgery she had was in February 2011, to remove a congenital hairy nevi. Anne had hers at birth (only a 1% chance of this happening) & it was medium in size. We always said that God left his thumbprint on her cheek - that's exactly what it looked like. Thankfully we were working with Dr. Brenton Koch, who was so knowledgeable. He alerted us to the need to do surgery prior to puberty, as that is typically when you see them turn to cancer. He also has children & was sensitive to having the surgery prior to starting kindergarten - as kids aren't always nice.
For the next 5 years, Anne lived a very active & normal life. She didn’t have any outstanding issues of the imperforate anus & you would never know she was once labeled as failure to thrive (because she was so small and wasn’t gaining weight.)
Anne has played softball & loves gymnastics. She swims year-round, runs, plays basketball, & competes in triathlons.
Around May 2016, we started noticing she was having issues with soiling on a pretty regular basis. Our pediatrician, Dr. Carole Rodemyer - who has always been amazing -