I wasn't the only one to go under the knife while we were there; when she was just two days old, Emma had brain surgery. The neurosurgeon inserted a Ventriculoperitoneal (VP) shunt to bypass the blockage and drain the excess cerebrospinal fluid (CSF) from her brain down to her abdominal cavity. The shunt relieved the buildup of excess fluid and lowered the pressure inside her head back down to normal. When all was said and done, she'd lost over a pound and a half of CSF that had built up in utero. Unfortunately, however, the high level of cranial pressure she endured before she was born resulted in her brain being restricted from fully developing. That caused developmental delays with several normal functions - motor skills (both gross and fine), vision, eating, etc. During her time in the NICU, she was also found to have a ventricular septal defect (VSD) - a hole in her heart. Needless to say, Emma has been a very popular baby with her doctors, nurses, and surgeons at Children's.
Emma came home from the NICU on March 5th, 2011. That day was the first day she had bottle-fed all of her meals without having to be fed anything through a tube. It was an exciting feat, but one she and I would now have to be able to replicate every day on our own moving forward. I knew she could do it. Emma had been so strong since she was born, and had already been through so much, I just had to summon up the strength to rise to the challenge with her. There are really no books like What to Expect the First Year for parents of children with special needs because every child is different and so are their needs. I would have to depend on Emma's medical team to help keep me educated and prepared. Being the eternal optimist, I dove in head first with all my charts to track everything the nurses in the NICU had trained me to and knew it wasn't a matter of "how were we going to do this" but "we will figure this out, one day at a time." Emma and I were going to figure out how to make our lives the best we possibly could.
Emma has many people in her life supporting her growth and development on a routine basis. She has a Pediatrician, Developmental Pediatrician, Pediatric Neurosurgeon, Pediatric Cardiologist, Pediatric Ophthalmologist, Pediatric Ear Nose & Throat (ENT), Occupational Therapist (OT), and Vision Impairment Therapist (VI). She also has been in a cranial remolding orthosis, also called a STARband or "helmet", since she was three months old. This earned her the nickname "Baby Stig", a reference to the popular BBC Television show Top Gear. Emma is currently in her third helmet, as she just kept out growing them, but soon she will be phased out of this one as well. The treatment has made such a large impact that I'm eternally grateful this technology exists. All of her doctors and therapists have been so impressed with her positive attitude and desire to learn. It is inspiring to see her so happy so much of the time when she is working so hard to learn tasks that many take for granted just as I used to before I had Emma.
For the first couple months after she left the hospital, I was lucky enough to be home with Emma. It's a good thing too, as she had a very full dance card, with anywhere from one to four appointments every week. Although it was hard to keep my head on straight, my trusty iPhone had all of her appointments on the calendar and would remind me where we were headed that day. Overwhelming as it was, Emma never seemed bothered by all of the time spent packing her up and traveling all over Dallas to see her numerous doctors. I am very grateful that her therapists all come to my house for her sessions - they are through the local school district and are absolutely wonderful. It was nice to have someone come to us some of the time, and really made a difference in my schedule as I knew I would be going back to work when she was three months old. She started working with her OT once a week before she was even two months old. Then, we added VI therapy when she was seven months old twice a month. When we added the VI therapy, we also added two additional sessions each month with her OT. This meant Emma had about eight therapies every month. She is still on this schedule today, but we will be adding Physical Therapy (PT) and Speech Therapy as she gets older and begins to need that support as well.
Emma's first challenge when she came home was progressing enough in her eating abilities to graduate off of using Simply Thick - a clear, tasteless gel used to thicken her breast milk and formula so that she could drink it without risk of aspirating. She did just that on June 15th, 2011 after she had a swallow study done at Baylor Medical Plaza in Grapevine. First, they watched her drink liquids with various amounts of thickener, all the way down to straight formula, while she was hooked up to an x-ray machine. Then came the ultimate test - green beans. She had never had any baby food before so it was a taste she wasn't sure of, but she did get a little bit down without any struggle other than with the new foreign flavor. That meant it was now time for us to try baby cereal at home. This was not only a challenge because she wasn't really a fan of the cereal, but Emma was not able to sit or hold her head up on her own yet. Looking back, it's hard to believe that with how messy and difficult it was when we started that she loves cereal the most now.
Another challenge Emma faced was she was highly prone to ear infections. Sometimes, when someone is born with hydrocephalus like Emma, the ear canals are not shaped normally. They were stretched during development in utero, and after the shunt surgery got coiled up in a way that makes it hard to drain. After battling busted ear drums and constant ear infections for months, she finally reached six months old (the youngest they allow children to have tubes put in their ears). On August 9th, 2011 Emma underwent her second surgery at Children's. This surgery took less than 15 minutes from the time she left my sight to when I was brought to her bedside in recovery, but those 15 minutes have made a huge difference. She has only had one ear infection since, and that was from a Respiratory Syncytial Virus (RSV) infection which she got October 13th that same year.
The main physical challenges that we focused on in the beginning were her gross motor skills. She has very low muscle tone and a slightly enlarged head due to her condition, so it makes head control, balance, rolling over, and sitting much more difficult. Emma has always preferred to be on her back over her belly, but with encouragement (occasionally in the form of one of her favorite teether at that time; my finger, the teething ring, or "Ducky") she became proficient at rolling as long as someone could help her figure out what to do with those seemingly strange appendages that sprouted from her shoulders. It took over seven months before Emma had the strength to hold her head up for about a minute when she was supported by her trunk and wasn't wearing her helmet. Once her head control improved, we began to work on supported sitting. She can now sit for approximately fifteen seconds on her own before she either loses her balance or her desire to sit, but she still prefers to lie on her back and play with her hands and feet.
But I feel the challenge that has been the most trying emotionally has been her vision. Seeing your surroundings is such an overlooked ability, that until you are faced with someone that can't, you really don't appreciate it enough. To make eye contact with your child and see their face light up because they recognize you, and are genuinely happy to see you, is something I am yet to experience with my daughter. Her Pediatric Ophthalmologist confirmed on July 14th of 2011 that her optical nerves were intact, but we would have to wait and see if her brain would develop in a manner that would allow her to utilize her eyes in any way. It wasn't until she was a year old that Emma began to show signs of sight. She would reach for lighted toys that made no noise, and although she still isn't tracking with her eyes, she has recently started following lighted items with her head and reaching for them as they move across her field of view. There is no eye contact yet, but I know she'll get there one day soon.
Emma has been progressing so well with only a few setbacks. When she was diagnosed with RSV, she had to have breathing treatments several times a day for months. She also had strep throat on January 27th of 2012 shortly after she finally seemed to be almost full strength again after the RSV. She has struggled with congestion since she was very young, but is now on Nasonex daily and that seems to have done the trick. So, if you saw her now, Emma would be a happy seventeen month-old gem that you probably wouldn't notice is all that different from other children her age. You might notice the beautiful smile full of teeth, hear her say her name, or perhaps you'd just see a child with a slightly larger head that isn't sitting on her own yet. But no matter what you see when you look at her, I guarantee you your heart will melt when you hold her - mine does every time.
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