Violet was diagnosed yesterday with unilateral coronal craniosynostosis. A CT scan showed that the bones on the left side of her skull have fused prematurely. Left untreated, her brain won’t have room to grow, and developmental issues will occur. Surgery is the next step and will occur in August. A cranio-facial surgeon and neurosurgeon will separate the fused bones and remove a chunk of skull to give her brain room to continue growing. She’ll spend 3-5 days in the hospital. Obviously we are very upset and reeling from this news. It’s unbearable to think about sending my child off to an operating room to undergo a complex surgery. We have read that her head will swell tremendously and that the 48 hours after surgery can be difficult. I am just devastated.
I have been thinking about blogging, but it seemed overwhelming to sit down and try to cover everything that has been going on with us. And honestly, I wasn’t sure anyone was even reading this, so I wasn’t sure I wanted to bother. Thanks to Mini for commenting so I know at least someone is out there. Here goes…
The biggest thing going on health-wise is that Violet has a new diagnosis: craniosynostosis. This is a birth defect in which some bones in her skull have fused too early. Her pediatrician diagnosed her after I broached the subject of her funny-shaped skull, and she referred us to a cranio-facial specialist. We saw the specialist last week, and we have a CT scan scheduled for this Thursday and should receive the results the same day. There are different types of this condition, and depending on what’s going on with her bones and brain, she may either need surgery or a helmet. The surgery sounds terrible (they take out a piece of her skull so that her brain has room to grow), and we’ve read that the first few days afterwards are rough, but babies are resilient and recover well. The helmet doesn’t sound like much fun either, but left untreated, she could have seizures or go blind. Clearly, we have to treat it. She will be sedated for the CT because she has to be completely still in the machine.
We are still fracture-free (knock on wood) since November 5th and 6th! There have been many, many situations lately that could have easily caused a fracture for an OI baby–a leg has become stuck between a crib slat (this happened yesterday, and the breathable bumper immediately went back on the cribs), or we’ve struggled to push the babies’ legs through a jumperoo or exersaucer. And our babies’ bones have stayed strong and unbroken through these incidents, which is excellent.
They received their 5th Pamidronate infusion last Tuesday at the children’s hospital in Omaha. Both babies have opinions now and were not happy about getting an IV. My husband had to work, so I drove there solo and dealt with the IV placements and immediate aftermath by myself. A few hours later, my dad stopped by to visit and ended up just staying the rest of the time. The College World Series was in full-swing in Omaha, and both teams that competed in the finals–University of Arizona and University of South Carolina–stopped by our room to visit. My dad loves baseball and was so thrilled to meet them, and they gave us signed baseballs that my husband was excited about. We didn’t get any pictures with the South Carolina team, but the Arizona starting shortstop and star pitcher each held a baby, and we snapped a few pictures. It made a long day a little more exciting, and I think the babies enjoyed the distraction.
An orthotist measured Violet today for a new clubfoot brace because she has pretty much outgrown the one she received in February. Her current one was custom-made for her and is especially lightweight, but her orthopedist thinks she is strong enough now to go with a standard brace. So we are going with the Ponsetti shoes and bar. We should be getting it in the next few weeks. She only has to wear it at night at this point, so hopefully it won’t be too bothersome for her. The bar is metal and is quite a bit heavier than her current carbonfiber one, but the advantage is that her current brace is experimental while her new one is proven to aid in clubfoot correction. She still has a tendency to pull her feet inward, and I have some fear of relapse. Her orthopedist always tries to reassure me by saying that worst-case scenario, if he thinks her feet are relapsing, he will cast her for two weeks or perform a tendon transfer surgery. He says this in the most nonchalant way possible. Obviously he has never tried to entertain a child in double casts or comfort a baby who has just become awake after surgery. I’m hoping the Ponsetti shoes and bar will continue to straighten out her feet. Currently the little Houdini slips out of her shoes every single morning when she wakes up, so it’s getting more and more difficult to keep them on her feet.
Layla is teething and recently had a miserable cold, but she is doing really well otherwise. I’ll post more about her below.
In my last post, I mentioned that we sent off Violet’s blood for DNA testing to receive an official OI diagnosis. There are many different types of OI, and while our symptoms are characterized as Type I, we wanted confirmation. Plus, if anyone ever becomes suspicious that our babies are suffering abuse or something like that, we can present the results as evidence. Anyway, the results are in, and we have a gene mutation that has never been described before. Similar mutations do cause OI, so the conclusive results are that she does have OI, but they cannot match her to a type because she doesn’t fit any of the existing categories. Very interesting. This doesn’t really mean anything, except that any geneticist would probably be fascinated by our DNA. We have a long family history of this condition (dating back to at least the Civil War era), and Violet was the first to have her DNA tested, so this is significant for our family.
Are you exhausted yet? Sometimes I am amazed at all of the medical appointments on our calendar, but we remind ourselves that at least none of these issues hinges on their survival. Everything is cosmetic or maintenance, and not life-or-death. In that sense, we are very lucky.
V&L turned 9 months old on June 13, and developmentally they are doing great! A physical therapist works with them bi-weekly to improve their strength and meet milestones.
Violet is sitting up (as well as sitting herself up) with ease. She rocks on her hands and knees, but hasn’t connected the dots yet. She rolls and gets around pretty easily. She is discovering her voice and lately has been screeching at the top of her lungs randomly. It’s an assault to our ears, but we love it. She went through several weeks of repeatedly saying “ma-ma-ma-ma,” but lately we can’t get her to say it. We must have worn out our welcome by constantly requesting that she say it. She has some stranger anxiety and separation anxiety, which is new over the past week or so. She calms down instantly when I pick her up, which makes me feel like such a mom. And reminds me of how lucky I am! She weighs 18 lbs 5 oz and has plenty of rolls, and she’s 26.5″ long. She still has her same two bottom teeth, with no signs yet of the top two front teeth. She loves jumping in the Jumperoo, loves sitting in front of a basket of toys and exploring every angle of every toy. She loves tags on things. She loves splashing in the bathtub. She makes the funniest “mean” face where she scrunches her face up like an old lady and rapidly inhales/exhales. My husband’s family says he used to do the same thing. And speaking of my husband, she looks exactly like him. Everyone remarks on it when they see her.
Layla looks exactly like me, except she has my husband’s long eyelashes. There is no question that CCRM grabbed the correct tube of embryos! Layla army crawls across the floor and gets better at it daily. She also gets on her hands and knees and rocks, and maybe seems a little closer to figuring this out than Violet. She is suddenly sitting up with ease, finally! She says “da-da-da” (music to my husband’s ears). She is clapping, which is new as of last Friday. She also likes clicking her tongue to mimic us and also shaking her head back and forth. She is not as loud as Violet, but she cries a lot more forcefully. She doesn’t really have the stranger/separation anxiety yet and is pretty gung-ho about everyone who pays attention to her. She also loves splashing in the bathtub and breaks into a huge smile while we set her in the water. She has her two bottom front teeth, and now the top left front tooth is very nearly breaking through. She has been impossible the last two days because of it. I stay patient by reminding myself that it’s just a phase. : ) Layla is more dramatic and more demanding than Violet. She definitely lets us know when she needs something and when she’s not happy with something. She weighs 18 lbs 8.9 oz, so she is now 3 ounces heavier than Violet! She was almost two pounds smaller at birth, so she has really caught up. She’s a quarter inch shorter–26.25″ long.
Both babies are eating lots of fruits and veggies now, along with puffs and Cheerios. I think they’ve tried 18 foods now. Their favorite food seems to be bananas. They still sleep all night in their own crib–I don’t remember the last time either of them woke up in the middle of the night. We did the cry it out method, and it worked so quickly. It was the right decision for us.
Life in General
We have been tested so much this year, and as rewarding as it has been, it has also been exhausting and hard. I think it has taken a huge toll on me, but I just keep going and put one foot in front of the other. That’s all I can do. It has probably taken a toll on our marriage, but we are still going strong. Because I don’t work (although I am looking for a job now that the babies appear strong enough for daycare!), I shoulder the brunt of these medical appointments. I take them for shots, take them for clubfoot stuff, take them for their infusions, take them to the cranio-facial specialist, help with physical therapy, etc. Not to mention just the day-to-day care that goes along with 9-month-old twins. It can be a very lonely job. I am doing the best I can, but know that I could do better. When I return to work, my husband and I will share the medical stuff so that neither of us is taking too much time off from work, so I think that will help us to be more on the same page. I feel that I am my own very last priority, and it really shows in my appearance and my energy level. I need to work on that. My husband is wonderful and encourages me to do things for myself, but I just don’t have the energy most of the time. I am going to do better.
#1–Playing on the floor together.
#2–Studying a Puff the first time we gave them one.
#3–Layla hanging out on the deck on a nice, breezy evening.
#4–Violet wearing her daddy’s baseball cap.
#5–Layla meeting University of Arizona’s starting shortstop Alex Mejia at Omaha Children’s during a Pamidronate infusion.
#6–Violet meeting Arizona’s star pitcher Konner Wade at Omaha Children’s the same day.