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.

11 responses

  1. Welcome back! Wow it sounds like you have your hands full, but you are in great spirits. Your girls are lucky to have such a great mom. Thanks for the harness info. It helped.

  2. Oh my gosh Auntie Em – what an update that was! It sounds like a pretty difficult few months you’ve been though; I can’t even imagine. I’m so glad that overall the girls are healthy and happy though. I look forward to more updates!

  3. I followed along with your journey before, though rarely commented, so I doubt you remember me. I look forward to continuing reading as you go through the rollercoaster of being a (twin!) mom, not to mention your girls’ condition…that must have been so incredibly hard, but what a blessing, that the clinic they need is so close to you! It sounds like, between the support you have, the doctors at the clinic, and you as their mom, your daughters are getting THE best care to help them grow healthy and strong!

  4. so glad you are blogging again…
    i was in tears reading the chronology of fractures, so sad for all of you- for the girls and also for you as their parent (any booboo is tough on a parent, but this must be a whole other realm of that).
    how fortunate to have that hospital so close to you, and to have the girls being treated right now.

    will be thinking of you…

  5. So happy to have you back and read all about you and the girls! Sometimes life does not take us where we expect, but it sounds like you are willing to make the necessary sacrifices to provide the very best for Layla and Violet, and reap the rewards, like being there for all their smiles and coos, first steps, etc.

    Happy Holidays! Look forward to reading more!

  6. So glad you are blogging again! I was just thinking I needed to check in with you 🙂 Sounds like the last few months have been quite the rollercoaster for you guys. Is OI the same condition that you have?

  7. Wow, it’s so great to hear from u. Obviously you are a fantastic mom and will continue to care for your girls special needs. I look forward to reading more.

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