Goodbye, 2011. Hello, Rest of My Life

2011… Never before have I experienced a year more full of extreme highs and lows. I was so very blessed with the experience of pregnancy and spending the last three months gazing at my beautiful daughters. As I reminisce the events of this year, I smile as I remember the shock and elation of my first beta, the amazement of seeing those two gorgeous heartbeats at my first ultrasound just before Valentine’s Day, and then thanked my lucky stars daily as my pregnancy continued with no complications. In mid-April, many family members joined us as we found out we were expecting two healthy baby girls–one of the happiest days of our lives.

Then the first rough part of the year commenced. Just before Memorial Day, I fell in the shower and injured myself quite badly–three fractures, two dislocated kneecaps, and subsequent knee surgery while 21 weeks pregnant. My bone condition, dormant for many years except for some knee issues, had returned with a vengeance. It felt like karma had returned to bite me, since I had been so lucky the first few months of the year. I spent eight days in the hospital and the next seven weeks confined to a hospital bed in my living room, requiring a bedside commode (translation: a seat with a bucket that my husband or mom had to clean out–humiliating!). It was quite a circus getting me to my baby showers in a wheelchair, and when I was finally able to use a walker to go very short distances, that actually seemed like an accomplishment. My husband and I went through our first-ever rough patch, as he struggled to work full-time and take care of our house and me (and deal with my mom living with us, because I literally could not care for myself), while I felt frustrated by my injuries and lack of progress, grieved the loss of my independence, and tried to tolerate the pain I was feeling. It was a very, very long summer, to say the least, and feeling the flutters of my babies was just about the only thing that kept me from sinking into a major depression.

Things improved a thousandfold in September, when we welcomed our long-awaited daughters right on schedule. They had no sign of my bone condition (osteogenesis imperfecta type I), and we were on cloud nine. The day after our babies were born, I realized that the pain in my body had lessened in a major way. It seemed that my body, no longer having to devote resources to growing two babies, had accelerated its healing process. Little did I know that I was regaining my independence so that I would be able to care for two babies with one fracture after the other!

You can read the brain dump in my first post on this blog to see how things transpired with our daughters’ bones starting October 7th. It has been another rough time in our lives, but thankfully, my husband and I are handling it as a team and have been able to lean on each other. Thanks to a wonderful parents group on FB, I learned about an OI clinic and a medication that was not available to me as a kid. An OI parent in North Carolina (who is also a physician) helped us to secure a quick appointment with this clinic, and our girls received their first treatment at the end of October. Since then, each baby has only suffered one fracture each–quite an improvement! They are thriving and becoming more interactive with each passing day. I honestly couldn’t ask for anything more and thank the Lord every day for them.

So as I say “good riddance” to my infertility struggles and medical issues for both my babies and myself, I welcome 2012 with open arms. I suspect it will be a year filled with pride watching my girls achieve milestones, and I am so looking forward to seeing what is in store for us. Despite the rough times of this year, I feel like the luckiest girl alive. I am walking pretty much normally again and hope to start walking daily for exercise in the spring, and I have two gorgeous babies who are growing and causing me to love them more with each passing day. I am blessed!

Happy New Year!

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.