Appointments, appointments, and more appointments

20170505_072114The past few weeks have been a bit of a blur. I will try to summarize what’s all happened and get everyone up to date! Colette continues to have many appointments. I promised after my last post to update everyone on her big week. Well, her big week turned into a big weekend. We ended up in the ER two times in one day. The first trip was to revise her incision, which went well. After being in Omaha for nearly six hours we were relieved to be headed home. However on our way home Colette developed a very loud, alarming stridor (similar to the wheezy, gasping, high pitch breathing you associate with croup except this was the most worrisome noise I have ever heard an infant make). I immediately called our neurosurgeon who wanted us to head back to the ER. Stridor can be a serious symptom that can signify the need for a shunt in a child with spina bifida and Chiari II Malformation, both of which Colette has. We made arrangements for the kids, threw a few things in a bag, and headed for Omaha.

Naturally when we arrived at the Children’s ER it was busy. Colette sounded so terrible that people allowed us to go ahead of them. After the ER physician and neurosurgery resident saw us it was decided that we would be admitted and she’d get a shunt in the morning. We were disappointed, as we have been hoping and praying to avoid a shunt for Colette, but knew if it was what was best for her that it needed to be done. By the time we were settled in to her room, she got admitted, and all of the other tasks involved with being in the hospital, we ended up getting only a few hours of sleep. The OR nurses came up to get Colette bright and early. No matter how great or amazing the nurses, doctors, or hospital may be, it is still one of the most challenging and difficult things for me, handing over your child to someone else. Watching someone wheel them away and know that you have zero control and cannot make things better or go away.

Luckily they allowed us to go down with her. Spencer and I went back to pre-op, and Dr. Puccioni, the neurosurgeon, came back to talk to us before he took her back for the surgery. He asked how her stridor had been overnight, and Spencer said it had improved from the previous night. After hearing this, Dr. Puccioni, tried to see if he could induce her stridor and make it worse. He recommended not doing the shunt because it is a permanent procedure, has many risks for revisions, complications, infection, etc. He had a feeling that her stridor could be an ENT issue and not related to her Chiari Malformation since it had not worsened and her MRI looked stable. While she was there he did take some fluid out of her head through her soft spot to test her for meningitis. I’m telling you, this girl is strong…she didn’t cry or have any sedation as a needle was inserted into her head, ouch!

The ENT doctor came by that afternoon and performed a scope on Colette. She preferred the needle in her head to the small scope down her nose. Not so sure that would have been my preference though. Thanks to the scope they found that her larynx is immature, a common finding in infants. She will follow up with ENT and should hopefully outgrow her stridor. Once again, the power of prayer is truly an amazing thing. Colette was, no lie, two minutes from getting a shunt. We ask for continued prayers that she can continue to grow, develop, and do well without needing a shunt or other procedures.

Since that big weekend we have had several other appointments. Colette’s incision is healing very well. Her urology appointment and renal ultrasound went good. She will have a big urology test and visit in July, so we could use lots of prayers for good results. Colette failed part of her newborn hearing test, and she had to retest at Children’s. We weren’t too concerned as she definitely responds to all of the loud noises around our house thanks to her older siblings, and she easily passed her re-test, thank goodness!

Colette’s orthopedic doctor wanted her to have an ultrasound of her hips. He was concerned that she may have hip dysplasia. I had this as an infant and had to have surgery and body casting since mine was diagnosed at 6 months of age, so early detection can make a big difference for treatment options. We were very pleased that her ultrasound went well and her hips are normal. They will continue to monitor her closely over this first year, and the orthopedic team will be very involved in Colette’s development as she grows.

I want to share a really amazing conversation we had with our orthopedic doctor. He was assessing Colette after her ultrasound and she was kicking her legs, moving her toes, and flexing her ankles (all movements that are VERY surprising she is able to do given where her defect was on her spine). He noticed I had two pendants on a necklace and asked me what saints I was wearing. I told him I had a guardian angel pendant and a Saint Colette pendant. I explained the story about Colette’s name when we googled Colette and saw there was a saint who performed some miracles on sick infants and for expectant mothers and how that played into selecting our daughter’s name. He smiled and told us that all of our prayers to Saint Colette obviously helped and made a difference because her movement is not typical for where her defect was. So again, I cannot even begin to explain how important and amazing the power of prayer truly is. God has certainly blessed us on our journey so far, and we hope and pray that Colette continues to defy the odds set against her and make her way through this journey with strength, courage, and determination!

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