Busy Start to the Year!

These little girls are keeping me busy lately!!! Believe me, I’m not complaining!

Violet is WALKING!!! We began really encouraging her to walk by holding one of her hands and having her walk pretty much everywhere in our house that we would normally carry her–to her booster seat in the kitchen for meals and snacks, to her bedroom at naptime and nighttime, to her changing table for diaper changes, etc. We could tell that she was SO close, but she was just afraid to let go of our hand. She went to her daycare on January 25th while I worked onsite at my job, and when we picked her up that evening, the teachers were so excited to show us that she had started walking independently. In fact, they put her down and she walked across a hallway to reach us with a huge grin on her face! The fact that Violet has achieved this milestone feels to us like such an amazing accomplishment. This child who broke both femurs in her first two months of life, who went through so much with bilateral clubfeet, and who had her skull cut open less than six months ago, is walking!!!! We are so ecstatic for her, and she is very clearly thrilled with her newly discovered mobility. She is walking more and more every day.

Both Violet and Layla are so, so fun right now. They’ll be one and a half next month! They are interested in everything I do, from preparing the coffee pot to cooking and cleaning. I can almost see their brains soaking everything up!

Violet has had a language and personality explosion over the past few months. Words that they are both saying are:

  • Hi!
  • Bye-bye (and they wave while they are saying it)
  • Night-night
  • Love you

Layla is more the singer and Violet is more the dancer. When we sing Twinkle Twinkle Little Star, Layla says “Up A-Ba” (then we finish with “the world so high”). Then she says “Di Di Di Di Di Di” and I believe she’s trying to see “Like a Diamond in the Sky” because there are so many long “I” sounds in that phrase. She sings by herself too, just gibberish but it is very cute. Violet sways back and forth in her booster seat and makes some singing sounds as well. She loves to dance to Yo Gabba Gabba, and she crouches down and shakes her booty or swings her arms left and right across her body. Her dancing is especially cute because she has a bit of a bubble butt! : )

It seems like they’ve had a cold for months now. It goes away for a week and comes back. Today we are in runny nose mode. A few days ago we were in sneezing-fountains-of-snot mode. I caught acute bronchitis at the very beginning of the year and was so sick. A doctor at urgent care prescribed me an inhaler, a z-pak, a steroid, and cough syrup. I was afraid I might get admitted to the hospital, and I was terrified of Violet or Layla getting it. Luckily, no one else in my house got it. It made for a very miserable couple of weeks! I’m ready for spring and hopefully healthier little girls.

Both girls are in a terrible hitting phase currently. We are consistent with our correction–we grip their hand and tell them “No No” and remind them that hitting is bad. We show them soft touches and encourage them to be nice. So far our correction has done little to no good. Most of the time when I correct them (especially Layla), they turn around and hit me. Ha! Time-out is just no good at this age, at least for our kids. We tried and they thought it was funny. We’ve been told by parents who have been there that this is normal. However, Violet also had a biting incident at daycare last Friday. I take one for the team and let her show interest in biting my index finger, then correct her when she does it. But it’s not clear to me how much it’s sinking in. I don’t want to have “that kid” at daycare who bites the other little kids, so I hope this phase passes quickly!

I must go, but next time I will post some recent pictures!

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2012 … Another Year of Ups and Downs

2012 … Another eventful, unpredictable, crazy year for us. Reflecting on all that has transpired since last January, I feel a little bit exhausted! Still, I remind myself to count my blessings. First and foremost, I am blessed with little ones who we so desperately wanted. Because of my unique fertility challenges (a huge benign tumor that required my ovaries to be deconstructed and then reconstructed, plus stage IV endometriosis), there were no statistics we could rely on to hope that we would ever have children. We were told in 2008 that we should bypass a second round of IVF and try donor eggs. A few years ago, I would have never dreamed that I would have TWO little girls underfoot, and yet here we are. Very lucky!

I so wish, however, that Violet and Layla would have been blessed with a smoother 2012. It was no picnic for me, either, but they were the ones being poked, prodded, and operated on. They have developed medical professional anxiety and have spent way too much time in hospitals. I am counting my blessings to have access to great medical care in our area, but just wish it wouldn’t have been needed!

In the spirit of not being too negative and counting my blessings, I present our highs and lows for this year. I will not be sad to bid this year adieu and am hoping that 2013 leads to much less medical intervention, zero surgeries, and plenty more milestones!

January Highlight: Layla rolled over for the first time!
January Lowlight: Violet had to endure casts for clubfoot treatment and a double tenotomy procedure, her first time under anesthesia.

February Highlights: Both V&L finally started pushing up a little during tummy time! Also, Violet finished the casting process for clubfeet and started wearing a much more comfortable brace.
February Lowlight: Tummy time made them hysterical and made us very nervous worrying that their femurs would fracture underneath their weight.

March Highlight: Six-month birthday!
March Lowlight: Layla was hospitalized for RSV.

April Highlight: Six months fracture-free! First teeth! (They have 12 as of the end of 2012.) First OI clinic. Started showing interest in books!
April Lowlight: Fourth PAM infusion… they are really starting to not like IVs!

May Highlight: Started rolling across the room! Started eating solids and babbling. Violet started wearing her clubfoot brace at nighttime only.
May Lowlight: ??? (The fact that I can’t remember is a good thing!) : )

June Highlight: Lots of walking outside with the stroller in nice weather! Oh-so-close to crawling, and starting to notice more about the world. Violet started sitting up by herself!
June Lowlight: Craniosynostosis diagnosis, Roseola, another round of sickness earlier in the month, and another PAM infusion.

July Highlight: Violet was finally considered strong enough for a regular clubfoot brace. Started pulling up. First swim! Crawling everywhere.
July Lowlight: Started preparing for surgery

August Highlight: Layla pulled up to a standing position on her own for the first time! Watching our baby girl bounce back from major surgery!
August Lowlight: Surgery and everything associated with it.

September Highlight: First birthday!!!!!
September Lowlight: ENT evaluation and plans for Violet’s ear tubes.

October Highlight: First “real” Halloween! (Last year they were six weeks old and had broken bones, so there were clearly no costumes or fun to be had at our house.)
October Lowlight: Violet’s third procedure, ear tubes

November Highlight: Layla started walking!
November Lowlight: A very stressful and exhausting PAM infusion

December Highlight: Violet started standing on her own for a few seconds at a time. Layla started singing to Twinkle Twinkle Little Star, and Violet started doing hand gestures to Itsy Bitsy Spider. Started climbing up our stairs by themselves (with us hovering closely behind).
December Lowlight: Lots of yucky sickness, but nothing major.

Milestones

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!

Blur

Ahhh… there are not enough hours in the day! I have been meaning to write ever since the surgery… thank you to Meg for reminding me during a time when I have a few minutes!

Violet did GREAT during her surgery! Here is an update in pictures:

She was the happiest girl in the world just before getting wheeled off to the operating room:

Her surgery lasted SEVEN hours! The surgeons were oh-so-careful with her because of the bone disease and the fact that kids with OI tend to bleed more, so they certainly took their time! Here she was just after surgery, in the PICU:

She had IVs and tubes everywhere… IVs on every limb, a Broviak catheter (also known as a central line) in her groin, a catheter, blood pressure cuff, monitors for her vitals, etc. She was hysterical because she was disoriented from anesthesia and because her pain meds hadn’t caught up to her pain level yet. The next few hours were among the worst of my life.

The day after was the worst day of swelling:

Her left eye swelled shut and she started to bruise. However, her spirits improved dramatically when her catheter was removed and we could pick her up. Within a couple of hours, she was clapping and smiling again. It was incredible.

Two days after surgery, her bandages came off. Check out this major incision:

We estimate that she has 60+ stitches in her head. They are dissolvable, thankfully! It sure wouldn’t be fun to hold her as all those stitches were removed!

Later that day, Violet was in a great mood and really showed us that she is an incredibly tough little girl!

Her surgery was on Thursday morning (Aug. 9), and she was released on Monday, August 13th–their 11-month birthday! We were so glad to come home, and she has been doing so great with recovery ever since. It is amazing to see how quickly she is healing.

She was fitted for a helmet while in the hospital and received one a few days later. Her surgeon felt that because the bone disease causes bone to be lesser quality than normal, she should wear it when out of our care for protective reasons. So if she goes to daycare, she wears it, or if she is being particularly rambunctious. We don’t want her to hit her head and break one of those healing bones or damage a plate or screw that is holding everything together.

The weekend after Violet came home, we dressed them up to attend a family function. We usually don’t dress them alike, but these dresses were a gift from my mom and were too cute!

Layla’s on the left, and Violet’s on the right.

Both babies are starting to enjoy some solid food, finally! They are very picky about flavors and textures, and more often than not refuse what we feed them. I started out feeding them only made-at-home purees, but found that all they were eating consistently were bananas and sweet potatoes. We branched out and started in with the Gerber products–Puffs, Cheeto-like snacks, yogurt melts. They do like those, of course, because they are pretty much junk. They liked Cheerios briefly but now spit them out–must be too bland. They’ve refused all of our table food for a few months, but are finally starting to turn around. They like pizza and macaroni and cheese, so far!

Certainly not nutritious, but we are just happy that they are eating anything off our plates! We’ve offered them healthier options–blueberries, pieces of grape, corn, etc.–but they have refused it all. Work in progress, I guess.

They are crawling like crazy. Layla still only army-crawls, but she’s still getting wherever she needs to go, so we guess that’s okay. Violet crawls, and is quick! They are both also standing. Layla pulls up effortlessly on everything and has “cruised” a step or two. Violet can stand, but only if you stand her up. She’s a little behind, which I have read is normal with clubfoot treatment. She is also really scared of falling, and that is something we’re going to work on.

Now we are planning for their first birthday! They turn ONE on September 13th–only 15 days away! I can’t believe it. This has been an incredible year on so many levels. I just look so forward to watching their personalities emerge even more and for them to accomplish milestones and all of their goals. We are so lucky!

The Latest–9 Months

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…

Health

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.

Milestones

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.

Pictures

#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.

How Are You Spending Your Sunday?

I spent part of mine watching Layla roll from back to tummy for the first time!

She’s been so close for a while, but hadn’t completely rested on her belly until today. We knew she was close because anytime we would lay her on her back, she would rotate onto her left side. She now sleeps on her left side, and a few times she had almost completely rolled over but couldn’t quite make it happen. Today it finally happened!

She also slightly pushed up and lifted her head from the floor today for the first time. When we’ve been holding them in a reclined position, they have no problem pushing up off our chests and looking around. But when on a flat surface, they haven’t been able to push up yet. Layla still didn’t completely push up, but today was progress!

Both babies are behind developmentally because of their fractures and because we were too nervous as they were healing to put pressure on their femurs. Lately they seem to be catching up, but Violet’s clubfeet casts have further delayed her physical development. She’s really not rolling over yet or anything. The past week, she’s been working on grabbing her feet (which Layla is also doing), but she is not catching up quite as quickly. It will come, so I’m not worried about it. A physical therapist will start working with them at our house weekly in February, so that should help as well.

Layla is also a chatterbox! She squeals often and tests out her voice. Violet has started doing this the past several days as well. Our quiet house will never be the same! But we wouldn’t have it any other way. : )

Who Says Thirteens Aren’t Lucky?

One year ago today–January 13, 2011–we met our babies for the first time…

They were no bigger than a grain of sand, and yet they were already filled with the beauty that we gazed upon exactly eight months later–September 13, 2011…

And today–January 13, 2012–those little grains of sand are four months old!

I’m sure all parents-after-IVF go through this (since many of us have the privilege of seeing our embryos before transfer), but it’s unbelievable to see in pictures how far we’ve come in a year. It’s amazing to see how you start out as a tiny speck and blossom into a full-fledged person. Isn’t life incredible?!

I must confess that the number 13 was not always my favorite. When I was told my c-section would occur on the 13th of September, I was disappointed. I always thought of the number 13 as an unlucky number, probably because of superstition. But when I thought about how our embryo transfer was on the 13th–certainly a lucky day for us!–my perspective on the number 13 shifted. I now believe 13 has certainly been good to us, and I’m excited to celebrate many more 13ths of each month as my babies grow and thrive! : ) Five months old, here we come!

3 months 15 days old

Christmas this year was an amazing whirlwind. Because I’m staying home with the girls for now, we were able to travel several hours to my grandpa’s and spend four days visiting my family. The only other time the babies have really traveled was when we drove to the OI clinic three hours away when they were six weeks old, so I wasn’t sure how they would do. Violet cried off and on during our drive, but Layla never made a peep. They both had a little trouble adjusting to being in a different place, with people in their faces and constant car rides from one family gathering to another. And, I found out that I seriously underestimated how much work it is to care for twins by myself! I was pretty exhausted by the time my husband arrived on Christmas morning. It was a good exhaustion though, and I’m not complaining–I am so fortunate to have had a chance to celebrate this holiday as a foursome this year, and I never lose sight of that.

I was so excited to dress them in pretty Christmas dresses this year!

Violet and Layla are really starting to grasp some new concepts. They figured out how to push the toys on their bouncy seat to make the toy bar light up and play music:

 Both babies are getting really good at holding up their heads, so Violet has been trying out her bumbo seat on occasion. She only sits in it for a few minutes before she gets mad (not sure if it’s uncomfortable or if it just wears her out to hold her head up), so photo ops are few and far between.

 Just today, they both learned to grab the rings hanging from their activity gym:

 

They are both changing by the week, and it is so exciting to see. Their four-month appointment is coming up in less than a month, and I can’t wait to hear if we get to start some type of baby food! They received a Babea baby food maker and two cookbooks for Christmas, and I’m excited to prepare food for them to try starting when they reach approximately the six-month mark. I’m trying to live in the moment and appreciate every second, but I’m always looking forward to the future excitedly!

Tomorrow the babies have an appointment at the local children’s hospital to receive their second Pamidronate infusion, the medication that will help to strengthen their bones and hopefully halt the number of fractures. My dad is going with me to help out, since my husband is now back at work full-time after being on FMLA leave all this time. They must have an IV placed to receive the medicine, so I’m a little nervous about that. However, we believe the medicine has already helped and are considering it a necessary evil. In the past eight weeks since their first infusion, they have each suffered only one fracture (knock on wood please). This compares to the three weeks prior to their first infusion, when between the two of them, they broke six bones. Only time will tell if the medicine will really make a huge difference, but we are happy with the results so far. I will update soon with a recap of their treatment!

3 months 2 day old

Since our babies were born (see my former blog, My CCRM IVF Journey), life has been a whirlwind. The first three weeks were absolutely perfect–we reveled in having two baby girls and all the joy and love that goes along with newborns. Then on October 7th, at 3 weeks and 3 days, our world turned upside down when the fractures started.

A summary of the past few months:

October 7th: Violet breaks her femur when we lifted her legs to change her diaper. An x-ray in the ER confirmed the fracture. Placed in a pavlik harness and given Oxy.codone. Clinically diagnosed with the bone condition (Osteogenesis Imperfecta Type I).

October 13th: Layla breaks her tibia after twisting her leg the slightest bit in my husband’s t-shirt. ER confirmed fracture. Placed her in an ace wrap because casts are too heavy for infants with bone condition. Clinically diagnosed with OI.

October 14th: Layla breaks the femur on her other leg after I just lifted her up to burp her like a non-affected baby. She let out a bloodcurdling scream, and I instantly knew a femur had broken. ER confirmed fracture. Ace wrap for tibia removed, and pavlik harness applied.

October 20th: Layla fell out of car seat onto hard ground because of our mistake. Fractured humerus, radius, and slight skull fracture on right side. Spent one night at children’s hospital for observation, but CT scan showed no permanent damage (thank God!). She had five broken bones at this point.

November 5th: Violet’s femur somehow broke either in her swing or when I lifted her out of it. Woke up at 10:45 p.m. hysterical, but ate 3 oz and slept for an hour on my shoulder. Then woke up hysterical again and continued to be inconsolable for an hour before we determined that there was probably a fracture. ER confirmed fracture. Placed back in pavlik harness.

November 6th: Layla’s femur fractured when I very carefully picked her up. I was supporting her femurs as we had been taught, but I guess sometimes you just can’t protect them enough. Decided not to take her to ER because we knew there was a fracture, and we had all necessary supplies/medicine at home. Gave Oxy.codone and placed back in pavlik harness. Orthopedist confirmed fracture from x-rays on November 8th.

So as you can see, it’s been quite a wild ride. Amazingly enough, the one dedicated OI clinic in the nation is only three hours from our house. I had no idea until I started researching groups on FB. We met an amazing OI mom who helped us to secure an ASAP appointment, and we headed there on October 27th. There is a medication called Pamidronate that has shown amazing results in OI kids. It is given by IV infusion starting as early as possible in the child’s life. Basically the earlier, the better. Our babies spent one night in the hospital, receiving half the dosage on Thursday, and the other half on Friday. We also met an OI mom who taught us better ways to hold the babies and offered advice about things like bathing, swaddling, setting limits on who can touch them, etc. They will receive Pamidronate locally every eight weeks for the immediate future. At some point, the medicine starts building up in their system, and they can receive the medicine less often. But for now, it is every eight weeks. While at the OI clinic, we met one of the country’s foremost experts on OI treatment, Dr. Paul Esposito. We are very fortunate to have this clinic so near to home.

Because of their fragility, I had to quit my job and begin staying home with them. No childcare facility wanted to take on the liability of caring for babies who may fracture from simple, everyday tasks. My husband has been on FMLA leave all this time and is finishing up his last 11 days of part-time leave. Starting the week after Christmas, he will be back at work full-time. It has been so wonderful to have him at home with me, and I am dreading being the only verbal person in the home. Oh well, it is a blessing to stay at home with them, and I won’t forget it. Financially, it is not ideal for us, but we will make it work because that’s all we can do. Hopefully when they’re around a year old, I can return to work. For now I will just do freelance projects intermittently. If you need any kind of editing work performed, contact me! : )

The babies are now three months old and really starting to interact with us. They smile at us constantly and love it when we talk or sing to them and when we play pat-a-cake, Violet especially. Just today, Violet grabbed onto the toy bar that accompanies her bouncy seat for the first time ever. They absolutely love to sit on our laps and hold their heads up. Violet is better at this than Layla. Violet is literally a replica of my husband, and Layla is a complete replica of myself. Yet, everyone asks if they are identical. Weird, because to us they look totally different. They hate tummy time with a passion and so far have lasted less than five minutes on their bellies because they get too hysterical. An early interventionist came to our home today, and the babies will receive physical and occupational therapy in our home until they are at least three years old. They are still not sleeping on their backs and currently sleep in their swing (Violet) and bouncy seat (Layla), while I sleep on the couch. Sleeping downstairs was my idea, so that my husband could be properly rested for work. They wake up generally between 3-4am, and again around 7am. Really, they are pretty decent sleepers, but I am looking forward to when they start sleeping through the night.

A couple of weeks ago, Violet weighed 10 lbs 11.3 oz, and Layla weighed 9 lbs 9.3 oz. Violet is in the 28th percentile for weight, and Layla is in the 8th percentile. We won’t allow our pediatricians to pull on their legs to accurately measure their length, because we don’t want any bones to break. So they are still in the 0 percentile for length for right now. Their heads are growing on target.

I have so much more to write, but I am tired so it will have to wait. I will do some picture posts to get you up to speed. Originally I was planning to keep our experiences private, but with the chaos of the past few months, I decided that blogging was once a good outlet (with IF) and probably will be again. Bear with me, since my life has gotten quite a bit busier and therefore may not leave much time for blogging, but I definitely plan to update once in a while. And knowing myself, I imagine that I will blog more frequently than I imagine right now. My fallopian tubes are “tied,” our family is complete, and maybe writing things down will help me to not forget things.

Despite all of these challenges, they are 1000000000000000000% worth it. They are undoubtedly the absolute best thing that has ever happened to me. I can’t imagine my life without them at this point. We literally thank our lucky stars almost every day. We talk about what life was like when we were praying for our BFP, and the hardships that this summer brought to us. Gosh, we were incredibly fortunate that we have two healthy, happy babies with us. I hope everyone who wants children will experience this unbelievable happiness. I can hardly wait to see what the future has in store for us.