What we’ve been up to in December…
Violet practicing standing just before heading out to our favorite local Thai food restaurant!
Layla showing off her new walking skills
Layla giggling while I tickled her.
Violet giving me some giggles before heading out to see Santa Claus.
Layla’s pretty green eyes.
Violet practicing standing in her new chair.
The biggest milestone-related news is that Layla is walking everywhere now! The first time she walked from one end of the living room to the other was November 28th, and she stumbled every couple of feet. She has improved every single day after that, and is getting fast! No more crawling for her!
She is still the feistier of the two. We call her our firecracker, because she can explode! She’s starting to throw tantrums that involve throwing herself on the ground and banging her head against the floor. Scary, but at least it’s not the twin who is four months removed from a $250K skull surgery. 🙂
She also appears (right now, anyway) to be more of the schemer. When she knows something is forbidden (like lifting the heavy lid of our ottoman that has caused some sore baby fingers in the past), she peers at me out of the corner of her eye while she attempts to lift it. I tell her No-No and she bursts into tears. She 100% knows she is not supposed to do it, but she tests me.
She does most of the talking at this point. She says “Hiya!” and loves to go “Mmmmmmmm-mamaaaaaa,” really dragging out the M sound. She voices her approval over foods she likes. She loves to press buttons, including endlessly turning our DVR on and off. This has resulted in her Daddy placing duct tape over the buttons, but that hasn’t stopped her from peeling off the strips of tape. She is tenacious and already can be relentless when she wants something.
She is VERY sociable, grinning broadly whenever she gets extra attention. A family member, someone she had only met once briefly before in the waiting room during Violet’s surgery, visited our house last week and stretched her arms out for Layla to come to her. Layla flashed her a huge smile and beelined over to receive the hug with no hesitation. She loves people and also laughs hysterically at our dogs when they play. Recently one of our dogs had a little bit of a cough because she had apparently eaten some leaves outside, and Layla laughed at every cough. I guess she thought it was a funny noise!
Layla plays peek-a-boo, and it sounds like she tries to mimic us when we sing Twinkle-Twinkle-Little-Star. When I sing to her, she claps loudly afterwards and yells Yaaaaayyyyy. She has been practicing turning in a circle while she stands up, which is funny to watch.
Violet is, in a lot of ways, the polar opposite of Layla. Not in every way–they are quite a bit alike, but in some ways they couldn’t be more different. Violet is very reserved and cautious. Whereas Layla ran straight for the family member who visited, Violet wouldn’t even look her way.
My husband thinks Violet is going to be Type A or have a little bit of OCD. She is very methodical in so many ways–she has the most precise pincer grasp I’ve ever seen. Whereas Layla drags out toy after toy, Violet picks them up and puts them away. She seems to prefer order and routine and structure.
Violet is also very tidy when she eats. She makes an effort not to dirty her face when she eats. I think she will be a very well-groomed adult!
Violet is not walking yet, and is only just now starting to try to stand independently. She is very obviously afraid of falling and only attempts to stand when she deems it safe. Sometimes her choices are questionable–for example, she received a little armchair for Christmas, and for whatever reason, she has deemed it safe enough to attempt standing upon. Of course, she runs the risk of toppling off the armchair and onto the floor, so I’m not sure why! On the flip side, if you hold both of her hands and gently coax her to stand by herself, she has deemed that an unsafe situation. She becomes afraid that you’re going to let go, and she immediately sits down. We’ve learned that what seems to work is placing a pillow on the floor. We say, “Violet, will you stand?” and she pushes off on the pillow and stands for a couple of seconds. She also pushes off my husband’s chest if he’s stretched out on the floor. She’s getting better and better at this and sometimes stands for 5-6 seconds at a time. She still lacks balance, though.
I believe I may have babied her too much because of her various medical issues and allowed her to become a little less independent. If you direct the girl to a push toy, she can stand up and show that thing who’s boss. But when it comes to independent standing/walking, she is just not there yet. She lacks a lot of confidence. Her clubfeet might play a role, but I’m not sure. I’m not going to worry a lot about it until she’s closer to 2 years old, because others have reassured me that some kids don’t walk until closer to that age. I’m hoping that one day it will just click.
To compensate for not walking yet, she walks on her knees and is really good at it!
The biggest milestone for her lately is that she has starting doing hand gestures to the song “Itsy Bitsy Spider.” She just started doing this a few days ago, and it is pretty neat!
Since putting tubes in Violet’s ears, she is vocalizing a lot more. It’s mostly babble, but “s” and “z” sounds primarily. However, this morning it sounded like she tried to say “Bye bye, Da Da.” She mixes up D and B sounds. For instance, when playing peek-a-boo, she says “Da” instead of “Boo.” But it’s an attempt, at least! She says dada all the time.
Violet hides in corners or behind objects and waits for you to find her. At Christmas, she kept wandering back into my in-laws’ hallway and waiting for me to peek at her. Then she would laugh. She does the same thing with her sister in our living room–she hides on one side of the couch and waits for Layla to find her, and then squeals with delight. She clearly understands cause-and-effect.
Violet loves stuffed animals, and also loves to feed us food. She holds out a Cheerio or Goldfish and laughs excitedly if we eat it out of her hand. She has even tried to offer me a sip of milk from her sippy cup. She seems like a born nurturer. Layla, on the other hand, will place a Cheerio on my palm but then snatch it back and eat it! : )
They fight terribly! Probably the most surprising thing to me about having twins is that they don’t seem to have this unbreakable bond yet that I hear so much about. We really never allowed them to sleep close to one another because of SIDS fears, and we had to separate them when they were so fragile because they may have somehow caused the other one a fracture, so I wonder if that’s why they’re not as close. At this point, they have slept in their own cribs since January and prefer having their own space.
Layla is assertive and rips toys right out of Violet’s hands. Violet vocalizes her displeasure but doesn’t attempt to fight back. (I am working on this behavior, btw.) They head-butt each other and stick their hands in the other one’s face to block them. They have each bitten each other at least a few times. I plan to be very consistent about correcting this behavior, but first they have to fully understand that “no-no” means they are being corrected. Layla knows better at this point, but Violet is just now grasping the understanding. I told her No-No yesterday about something else and her face crumpled, so I think it is sinking in.
They are still picky eaters. They love bananas the best over anything else. Violet or Layla yells at me while I shovel a piece of banana into the other one’s mouth, until I return back to the first one and shovel in another bite. Goldfish and cheese round up second and third for favorite foods. They love apples and peaches, yogurt and animal crackers. They’re turning into little carnivores and love turkey sausage and bacon, hot dogs, pork chops, pepperoni, etc. Layla loves eggs and chocolate (obviously not served together), and Violet hates both. They are still very texture aversive, and it’s difficult to find things they will eat. They hate veggies and a lot of fruits. We started out striving to feed them only healthful foods and at this point are just happy that they eat! We try hiding veggies in their food, and they pick them out or just refuse to eat. Violet loves whole milk and could seriously go through a half-gallon every day if we let her. We limit her to a few cups a day and offer her water the rest of the time. They still have a nighttime bottle, but we’ll have to wean them off of that soon. Our goal is to be completely done with formula by 18 months. Their dentist suggested that we start offering them a bottle filled with water instead of formula. We haven’t started this yet, but we’ll see if it works. Honestly, I am savoring their last few months of nighttime bottles, as that is really one of the few baby things left in our lives!
I could go on and on about all the things they are doing, but I lack time or memory. It is amazing to see all that they are learning and understanding from one day to the next. They are so incredibly precious to me, and my bond with them continues to grow. Words cannot express how thankful I am to have the privilege of seeing them achieve all of these milestones! A year ago, they were three months old and basically still little blobs. To be able to interact with them and help them learn and grow is the greatest reward of my life. I am very lucky!
Stats from V&L’s 15-month appointment this morning:
Weight: 22 lbs 5.1 oz (40th %)
Length: 29.5 inches (21st %)
Head Circumference: 19 inches (98th %)
Weight: 22 lbs 3.2 oz (38th %)
Length: 30 inches (35th %)
Head Circumference: 18.5 inches (87th %)
Apparently they have some big heads! Must mean they are really smart. : )
They received two vaccines today, and they were understandably not happy about that. They have upper respiratory infections, so they were already not thrilled in general. I had to wake them up early to be on time for the appointment, so they started the day a little grouchy. I crept into their room and watched them sleep for several minutes before waking them up… sleeping babies are so angelic! When I have to wake them up early, they have drastically different reactions… Violet stands right up and starts jumping up and down in her crib with a big smile and some giggles (much like my husband, who is a morning person), whereas Layla usually wakes up and starts crying (much like me, a grumbling grump for the first few minutes of the day).
Because we can never go to the pediatrician without some type of new diagnosis, the doctor today diagnosed Layla with KP (Keratosis pilaris). It’s basically a minor skin condition that causes little red bumps to appear on the backs of her arms. She already has eczema, so we had been applying tons of lotion to the backs of her arms, thinking that it was just a particularly dry spot. But when I actually took time to examine the backs of her arms last night, I noticed that it was actually a rashy-looking patch of skin. It doesn’t seem to bother her, but they recommended that we put cream on it twice a day.
This is gross, but maybe good information for a parent in the same situation… I also asked today about a rather large skin tag that Layla now has in the crack of her bottom. I never noticed it until her ER visit for her anal fissure, and I didn’t know if having a skin tag in that vicinity of her body would have any negative implications. The doctor said it’s common after a fissure or after a bad bout of constipation, and that it’s nothing to worry about. Good to know!
I’m surprised at how similar their weight is to each other. They have different body types… Layla’s legs are longer, Violet has adorable thunder thighs, Layla has a narrow bottom and Violet’s is a little rounder. Violet was nearly 2 lbs heavier than Layla at birth, so it’s amazing to see how Layla has thrived and caught up.
Thankful that they are doing so well and that we can mark yet another medical appointment off the list. The next well child visit is at 18 months in March. They are getting some serious medical environment anxiety (Layla started crying the minute we entered the exam room, before anyone had even paid any attention to her), but we are dealing with it. There isn’t much I can do about it, but I feel terrible seeing them cry like they did today. In one year, they have had the following medical interventions:
I’m sure I’m leaving some stuff out, but that’s a lot of medical appointments all by itself. Even when the medical issue applied only to one child, I had to take both of them most of the time because my husband obviously had to work. The unaffected child sitting in the stroller still felt the anxiety and stress of her twin, I believe, and learned to associate medical environments with the crying that ensued. I’m sad for them… I wish they hadn’t had to deal with any of this, but their OI had to be addressed, Violet’s clubfeet and craniosynostosis had to be addressed. Broken bones had to be x-rayed, vaccines had to be given. I tell myself that they are lucky, that many other babies deal with so much more, but I don’t want to invalidate their feelings. They don’t understand why they have to hurt, why they have to get poked and prodded, and their feelings are justified. It’s just a shame that they are now so fearful of these appointments. And I’m sure as they grow older and more aware, it’s going to get worse! Blah! : )
Next up: Milestones update!
I failed to post at the time that Violet had tubes placed in her ears October 9th, on her two month “cranioversary” (in other words, two months since her skull surgery). We became increasingly concerned about her hearing capabilities because she was barely vocalizing at all, and the very little vocalization she did sounded strange, almost as if she couldn’t hear herself. I would describe it as very nasally and sometimes it sounded more like groaning or moaning. Many times she would not turn to sound, and we had been told for months that she had fluid in both ears. She has only suffered maybe one or two ear infections, but the fluid was a constant presence.
Additionally, at her post-op cranio clinic appointment in September, a geneticist told us that he thinks she has something called Muenke Syndrome. Our research leads us to believe that she doesn’t exhibit very many of the symptoms, but apparently Muenke Syndrome is often demonstrated by head and feet abnormalities. For Violet, the connection is her craniosynostosis (specifically relating to the coronal suture that was prematurely fused on the left side of her skull) and her bilateral clubfeet. Many patients with Muenke Syndrome also suffer from hearing loss, so that combined with her speech delay led us straight to an ENT for evaluation.
The ENT observed the fluid in Violet’s ears and wanted to start a six-week steroid regimen to attempt to clear up the fluid. He said her hearing was equivalent to a person just stepping off of an airplane. He admitted that because of her craniosynostosis and recent surgery, this treatment option was unlikely to work, and tubes were probably inevitable. He figured the steroid was worth a shot. I left his office with the medicine, but immediately had “buyer’s remorse” and started thinking that we should bypass the steroid and move forward with the tubes. Six weeks is a long time to wait for the inevitable, and I didn’t want to worsen her speech delay. Plus, he pretty much told me that the steroid would not work. After talking with my husband, I called the ENT’s office a couple of days later and asked to bypass the steroid. Thankfully, her ENT agreed immediately. I was all prepared to advocate on her behalf, but he made it easy on me!
Here she was in pre-op just before the procedure…
The procedure was no big deal at all, just as we had been told by friends. I believe she was the first procedure of the day, so we were there bright and early (5:30, I think). The ENT was ready and waiting, so she was actually taken back about 40 minutes ahead of schedule. I had my usual paranoid discussion with the medical staff about how to handle her because of her OI and then walked with her to the door of the O.R. This time was much less traumatic than last time, since I knew this surgery was very minor. I went back to the waiting room, and literally seven minutes later, the ENT walked in to let me know that she was done and waking up. It was so quick!
I went back to the recovery bay, and she was TICKED OFF. She must be getting so tired of all this medical intervention, and she let me know it! She screamed and cried for about a half hour as I struggled to feed and dress her by myself (Daddy was at home with her sister). Finally she calmed down, and we were out of there. By the time she arrived home, she was totally fine. We’ve had no issues with the tubes whatsoever.
Everyone has seen a huge improvement in Violet’s hearing and speech since the tubes were placed. She is seeing a speech therapist for monthly evaluations just in case, but there is no question that she is hearing and starting to vocalize more. At her two weeks post-op ENT appointment, she passed a hearing test in a booth, so the discussions about sedating her for an ABR (auditory brainstem response test) ceased. She is now saying “Da-da” and often sounds like she is babbling consonant sounds. She mimics a LOT of sounds now, even when she hasn’t turned to look at us. She plays peek-a-boo and says “Da!” (instead of Boo), and she fake-sneezes by bobbing her head and saying “Ahhhh-cha.” We feel much better about her hearing now, and the speech therapist is impressed with her progress.
We have an order from the geneticist to have her blood tested for Muenke Syndrome, but we haven’t gotten around to it yet. I want to wait for a week during which we have no other medical appointments, and sadly that is a rare occasion. I hate for her to be messed with too often during a given week. We want to have her tested for a few reasons:
Her hearing will continue to be monitored very closely. She goes back to her craniofacial surgeon in February and will have a hearing test there, we have OI clinic in May when she will likely have another hearing test, and then we’ll move forward from there. Several doctors have suggested we have her tested at least twice a year, so she has many years of hearing tests in her future. Hopefully we can catch any problems as they arise, but for now the tubes are a success!
Last week, I took V&L back to Omaha for Pamidronate infusion #7 (for Violet) and #8 (for Layla). Layla has now received one more infusion than Violet because our local hospital made a mistake. When Violet had her skull surgery for craniosynostosis in August locally, we decided to do the 6th Pamidronate infusion while Violet was in the hospital, healing from surgery. They were due for it the following week anyway, and I couldn’t imagine bringing Violet back to a hospital for more needles after just going through major surgery.
Layla received her infusion a couple of days earlier than Violet, and it went fine. After Violet’s infusion a few days later, the staff came in and admitted that they had overdosed her on Pamidronate. She received more than three times the calculated dose, and more than half of the amount she should receive in a year. Obviously, we were livid. Thank goodness it wasn’t a narcotic or a medication that could have damaged her organs!
The OI clinic doctors decided that she should therefore skip the October infusion to balance out the amount of Pamidronate in her body. That means she went 16 weeks between infusions (August 13-November 30!). We were very afraid she would become fragile toward the end of the 16 weeks after going so long without the medicine. Luckily, she was fine.
It is getting VERY difficult (and exhausting!) to manage the girls during infusions. Oh, how I miss the days when they would hang out in their bouncy seats and allow me to entertain them! Oh, how I miss the days before they developed opinions and hospital anxiety! Don’t get me wrong–I love watching my babies grow and develop and learn, but each infusion has been more complicated and stressful. My hubby came with us for the October infusion, and we were both absolutely exhausted afterwards from chasing them around and keeping them from pulling out their IVs. There is no baby-proof area in the Infusion Center, so we had to watch them like hawks. I learned a few things from that experience and came better prepared this last time.
First of all, I brought their booster seats and lots of yummy snacks. Intermittently, they sat in their booster seats and played with toys and ate snacks. That was a godsend! Second, I finally spoke up to Child Life Specialists and requested at least one exersaucer, and they went to another floor and retrieved one. The only negative to this was that the seat swiveled all the way around, so they kept spinning in circles and getting wrapped up in the IV tubing. That was an easy fix though. Third, my dad brought the pack and play he keeps at his house, but we never needed it. My thinking was that I could place them in the pack and play with toys and let them play if I needed a rest. They will not nap at the Infusion Center (too much to look at, I guess!), so at least we had plenty of ways to contain them this time around. It helped my exhaustion level quite a bit.
We were in the Infusion Center from 10-5:30. When I was changing their diapers before heading home, I was horrified to find a bunch of blood in Layla’s diaper. A nurse quickly called the OI clinic, and they sent the diaper off to the lab to confirm that it was actually blood. Long story short, the lab confirmed that it was blood, so we ended up in the ER. After more than three hours (during which I had to entertain increasingly fussy and hungry 14-month-olds), they diagnosed it as a fissure. One of the possibilities was that it was a blood clot, so her actual diagnosis was a best-case scenario. We’ve been using cream and warm baths to help, and she’s had no more bad diapers. It was gross!
We were in the ER until 8:30, and I ended up driving home. We arrived home a few minutes before midnight, and fortunately they slept almost the whole way. It was a really miserable day for all three of us! My dad and stepmom were nice enough to come to the hospital and help me out with Violet, so that was lucky. I’m hoping our next infusion at the end of January is a smoother experience!
My girls are growing like weeds, and we were ecstatic to celebrate their 1-year birthday on September 13th. They were kind of sick on their actual birthday, so we decided to lay low at home. We did dress them up in their “It’s My Birthday” tanks and cute tutus (a gift from a family member) for an impromptu photo session.
Thankfully, they were feeling better on the day of their birthday party, September 15th. About 25 of our closest friends and family arrived at our house to celebrate. It was a beautiful day outside, so we enjoyed the outdoors in our backyard.
We wanted to prepare lunch for everyone, so we scheduled the party to start at noon. That is V&L’s naptime, so the rest of us enjoyed lunch and visited for a few hours while the guests of honor snoozed in their cribs. My hubby smoked pork shoulder and I prepared a bunch of food myself. Not sure we’ll go to that much trouble for future birthdays, but it was fun this year!
The loose theme of the party was “You Are My Sunshine.” The cake baker modeled the cakes after their invitations:
Otherwise, we decorated in bold colors–red, blue, green, orange, yellow. I didn’t want to be too theme-y; that’s not my style. We ran out of time to fully decorate as we had envisioned, but that’s okay.
Around 2, V&L were ready to join the party. We set up their booster seats in our backyard in an attempt to keep our kitchen free of becoming a smash cake disaster zone, and we set their cakes in front of them.
Violet did not like it much. She is meticulous when she eats, with a very precise pincer grasp, and didn’t think much of digging her hands down into the cake.
Layla, on the other hand, completely destroyed her cake. She was fun to watch!
Everyone said they might have upset tummies afterwards or have some bad diapers, but they seemed completely fine afterwards. Lucky us!
They received plenty of new toys, and it was so much fun to celebrate with those who are closest to us. Violet and Layla are so lucky to have so many people who care about them!
Recently I received my first-ever hateful comment. I’ve been lucky that almost everyone who has reached out to me by commenting or emailing me has been supportive of our decision to move forward with IVF despite the fact that my Osteogenesis Imperfecta could be inherited by my offspring. This is what the commenter wrote:
So you have OI and knowingly used your eggs to create embryos that would have a 50/50 chance of a potentially devastating disease? And CCRM went along for the ride. I’m speechless.
I wrote this person back and haven’t received a reply, so not sure if she was a troll or is simply choosing not to respond. I sent the comment to my trash instead of approving it, but I want to address it in a post in case others out there are thinking the same thing.
I have Osteogenesis Imperfecta. I have had about 12 fractures, mostly occurring my first few years of life. In my family, our bones are most fragile when we are newborns. I have knee problems and have had four knee surgeries. I wore a lift on my left shoe as a kid because femur fractures affected my growth plate and made one of my legs slightly longer than the other, rendering me very clumsy and prone to falling. My joints pop and crack when I walk sometimes. I became fragile again while pregnant with my twins and hurt myself quite badly, so my days of adding to our family are over (I had my tubes “tied” during my c-section). I need future surgeries on my right shoulder and both legs to improve my quality of life. I spent some time in doctor’s offices over the years, but much more of my time outside in the fresh air, doing what normal kids do. All of these things are true, and they suck, and OI at times has been a bit of a burden.
But you know what? I also grew up pretty normally, playing softball and basketball. I ran in P.E. and played with my friends after school. I rode my bike, swam constantly during the summers, and played tennis. I graduated high school, earned my college degree, fell in love and got married, and turned my attention toward having kids. We met with no less than three geneticists to discuss the impact of OI on our future children. We understood the risks and took the leap. I knew that because my quality of life growing up was so good, my kids would have a similar experience. My mom may not have let me play soccer or roller skate (pretty much her two big no-no’s), but I would say my childhood was pretty great. There has been nothing “devastating” about my own experience with OI.
Furthermore, at this point I have met a LARGE number of families who have MUCH more severe OI kids than what I personally have experienced with V&L or myself, and guess what? Their kids’ quality of life is pretty great too. They may spend more time in a hospital like I did, but they feel joy and feel love from their parents. I have witnessed it personally. And I am 110% sure that not a single parent I have met has thought twice about bringing life into this world, despite the risk of passing on this disease. These kids are a gift, no matter how severe their condition. And unlike when I was a kid, there are minimally invasive treatments available to improve quality of life. When I was little, bone rodding was a very invasive surgery with a long, painful recovery time. Nowadays, it’s the complete opposite. When I was little, there were no Pamidronate infusions like my girls receive to improve bone strength. These two therapies have turned even severe OI kids into walkers and runners, and research continues.
OI is part of who I am, but not all of who I am. I am also a wife, daughter, sister, and friend. I am also infertile, and wanted a baby more than anything just a few years ago. I’m guessing if you are reading this blog, you are likely going through infertility or are close to someone who is. So you are probably familiar with that deep yearning in your heart to expand your family. That yearning consumed me once we decided the timing was right to have a child. I really didn’t feel at the time that mild OI was any reason to quell that yearning and remain childless. And I’m so glad that I made that decision, because my children, OI or not, are incredible.
I think this commenter is also trying to say that CCRM should have stopped me from using my own eggs because of this mild condition. Are they expected to know about and test for every possible gene defect? I volunteered the knowledge that I have OI, but I could have just as easily decided not to share that information. What about parents who carry a gene for cancer, for heart disease, for diabetes, for high blood pressure? Technically, these could be potentially devastating diseases as well. Does this mean that no one should procreate, that the human race should just end because we are all genetically flawed? Of course not. A genetic counselor at CCRM sat down with us, explained the 50/50 risk, and left it up to us to decide if we were prepared to welcome a baby with OI. Of course, we had no idea what we were getting ourselves into, but in hindsight I wouldn’t change it for the world. We could have screened out OI by sending our embryos for testing in Chicago, but I chose not to. What if my parents had had that option? Would they have passed on me? I believe this is a VERY personal choice, and I don’t judge anyone who decides to screen out a serious medical condition, but I just couldn’t do it. And I am glad.
What do you think? I will not be offended by your responses, but am curious to hear your thoughts. The commenter left an email address, and it is firstname.lastname@example.org (she listed her name as Hanna).
Rant over. My next handful of posts will focus on getting caught up!