From the Beginning...

So, I figured that I should start from the beginning for anyone new who may read this.  Mike and I have decided that we have to tell everyone "officially" now, and I'm hoping this will be a great way to communicate Maggie's progress.  It's not really a topic of conversation that you want to have repeatedly.

I have to admit, I was holding off doing this because I was really holding out hope that she had a deficiency of some sort, like me, and that it wasn't OI.
So, here it is, from the beginning....

My pregnancy had been very low-risk, but I did have some strange things happen starting at 31 weeks.  I passed out behind the wheel while driving to work and I totaled our car.  Both baby and I were fine, but they never found out exactly why I passed out.  Five days later I came down with flu-like symptoms and was readmitted into the hospital for dehydration.  After that things were good until I was induced at 40 weeks exactly because her heart had dipped a few times during my routine non-stress test.  Maggie Shae Ivy was born very healthy on April 12, 2012.  At 5 days old she was admitted back into the hospital for jaundice and she stayed overnight so she could get photo light therapy.  At that time, we thought this was the most traumatic thing to happen in her little life.

Over the next few weeks she thrived.  At her 2 week appointment she had gained so much weight, had grown so much, and seemed to be the picture of health so her doctor said she didn't need to see her until her 2 month well-baby check.

Looking back now though, there were a few things we noticed about her: The whites of her eyes were greyish and her right shin (tibia) was bowed and there was a dimple there.  Also, a few minutes after she was born her legs were spread as if she was doing the splits.  The nurses, doctors and both of us laughed because they had never seen that before.   We know now that all of these things point to OI: blue sclera, an Orthopedic told us dimpling on the skin of the tibia can be a sign of fracture in-utero, and also that the straightening of the limbs could be a sign of brief paralysis, perhaps due to her tibia having been broken.  However, this being our first child, we didn't know that these things were different from other newborns, and when we asked her Pediatrician she said everything was fine.

At 6 weeks we noticed that she had a different cry and she wasn't really moving her right arm.  She had slept 6 hours one night and the next day she was acting very odd, almost lathargic.  She threw up and this was very unlike her.  I e-mailed the Pediatrician to ask if this was normal (it was a Sunday), but then she started to act okay and I really didn't think too much of it until I noticed that she still wasn't moving her arm much on Monday either.  Her Ped had emailed back an said she was fine, but by Tuesday I was really scared.  I called the Ped and they got her in that day.  She said it might be a nerve issue that could clear up within a few days, and to give Maggie tylenol and do certain arm exercises with her.  She wanted me to follow-up with her on Thursday.

Over the next two days we could tell that there was definitely a difference between her two arms.  When I would move the left arm above the elbow she would wince and whine.  Mike and I decided that we would take her to the hospital on Thursday regardless of what the Ped said.  When I followed up with the Ped on Thursday her response made me a bit concerned.  She started to try to schedule specialist appointments for Maggie because she thought it was Erb's Palsey.  We decided to take Maggie to Children's Hospital to have her arm x-rayed.  We eventually brought her into the ER thinking she had a broken clavicle.

When she was brought in she was asleep and content.  Over the next several hours we found out that she had (what they originally told us) several broken bones.  We were shocked, confused and unbelievably sad.  What happened to her?  We were accused of abusing her and were interviewed by police officers, social workers, and Dept. of Children and Family Services.  Being a teacher, I was terrified because I was fearful of the DCFS process. We asked the doctors repeatedly if she had weak bones or if it could be some sort of disorder, but they told us no, that it was trauma.  It was horrible.
Things started to look up around 2 in the morning when the police officer interviewed us.  He was actually one of the first people to treat us kindly.  He told us it didn't look like abuse and we started to feel like someone was on our side.  In the early hours of the morning someone mentioned Osteogenesis Imperfecta, and at that moment we were glad that we were no longer being accused of harming our baby.

Maggie stayed in the hospital because of her broken femur.  She would wake up crying every 20 minutes because she would startle and she was in so much pain.  It didn't help that we had to share a room.  I felt so bad for the poor little boy and his mother next to us because Maggie screamed all throughout the night.

In the morning a Geneticist came in to talk to us about OI, and that is when this journey began.  Maggie was discharged and we took our baby home with two splints on her legs, bruises up and down her arms from IVs, and a prescription for Hydrocodone.  The next few days were very trying to say the least.  She was in a lot of pain and we had little instruction about how to help her.  Plus, we were new parents just trying to get used to having a newborn, and now we had one with broken bones.  We couldn't pick her up or hold her close.  She could no longer breast feed.   We were extremely worried.  It was no way to live.

She was on tylenol for the next 2-3 weeks but she improved.  Babies are so very resilient.  We had a great Orthopedic and each time she went she was improving.  She got her splints off and they were replaced with a full-body harness, which was much better for her mobility, but we could not give her a bath.  After a few weeks the harness was taken off and she started to move her leg again.

So here we are today.  Looking back now it seems like all of this happened so long ago, but it's only been about 6 weeks.  It's hard to believe.
Having gone through all of this makes us grateful for a lot that we took for granted before.
I'm one to believe that everything happens for a reason.  I guess sometimes you're just not sure what that reason is, but I believe that one day I will understand.