Welcome to the world Owen and Caleb! Their birth story.

What a crazy week and a half! We had our twins! Owen made his entrance to the world- via c-section on March 31, 2010 at 2:11pm weighing in at 5lbs and 0oz. Caleb came one minute behind at 2:12, weighing in at 6lbs 14oz. First, I want to say, I could not be more in love. I thought I loved Gavin to capacity. I even worried I would not be able to love these two as much as I love him, because I did not know it was possible to have so much love. But then they arrived and I think my heart tripled in size.

Things did not exactly go as planned though. When we delivered Owen, he wasn't crying. I knew immediately that something was wrong. I actually knew months ago, without really knowing. I told Nick one night before we fell asleep that I thought something was wrong with Owen beyond one clubbed foot. It was just a feeling, but I knew and said to Nick that I would probably be worried until he was delivered and the pediatrician alleviated my fears. That did not happen. He came out and I kept asking why I could not hear my baby. Caleb was screaming his head off. Eventually I heard these tiny cries, comparable to mews from a kitten. I asked that someone tell me what was going on. Nick had a worried look on his face and all he could say, as he watched the pediatricians look at Owen, that something was wrong, but he could not tell what. Eventually the news came in dribbles. His neck is too thick. He cannot bend his joints. His hands are curled. He has marks on his face. He has difficulty breathing. He has two clubbed feet. He has a very curved spine. I felt like I was in the twilight zone. Caleb was fine. I just wanted to see my babies. They would not let me see Owen. He was whisked away to the NICU. They brought Caleb over and let me kiss his face. I looked at my beautiful baby and I felt scared. Scared for his brother, scared for what was happening. I wanted to be happy but felt like the joy of giving birth to two babies had been taken from me.

I went to recovery and we were able to hold and I was able to nurse Caleb which made all of us feel a little better. News regarding Owen again started to come. The neonatologist came in and explained a few things- he was on a breathing tube and breathing ok finally. The geneticist was looking at him. The pediatric orthopedist was going to look at him. My Ob/Gyn said what he has is so rare that most of them did not know what it was. The geneticist soon came. He said Owen has Arthrogryposis which can be genetic or not. He said his joints are contracted and cannot really bend. He wanted to run tests. We consented. Now we had to wait for everyone to finish with Owen to get a better picture of what was going on. I got to hold him that night after I delivered at 10pm. They wheeled me down and I took one look at my crunched up baby holding his hands closed and all limbs bent and I cried on his head. I kissed him and hugged him and told him mommy loves him, but I could not wrap my mind around all of it. I felt terrible he was alone in the NICU and I had Caleb in the room, that he was not nursing, that he had all these issues. I felt like it was my fault. My bad genes. My lack of space in my womb for him.

The following day was better. Owen was taken off the breathing tube and feeding tube and was breathing on his own and eating via bottle. I could visit him more and more often and soon enough I had a schedule down where I would feed Caleb, put him in the nursery if someone wasn't around or even if Nick was, so we could both visit, go attempt to nurse Owen and hang out with him, then leave, pick up Caleb and go back to the room for a while. I did that every three hours for all Owens feedings except one a night so I could get one small chunk of sleep.

Over the last week we have learned a ton about Owen and at the same time, still feel completely in the dark. They think our son has Escobar Syndrome. A rare genetic disorder that causes scoliosis and arthrogryposis which causes clubfoot and rockerbottom foot, and dislocated hips, all of which Owen has. Arthrogryposis is basically a description of symptoms. The symptoms being joint contractures. Owens knees, elbows and fingers are all tightly contracted. He has good range of motion in some areas like his shoulders and bad in others, like his elbows. For the clubfoot and rockerbottom foot which is also refered to as a vertical tallus, he has been casted twice now. He has casts which cover his feet, with the exception of the tips of his toes all the way up to the top of his thigh. His feet are severe so we are casting for approximately one month to see if we get results and if we don't we have to discuss other options. I am keeping my fingers crossed, as I would like to avoid surgery as much as possible. In the interim, we have contacted early intervention for OT and PT for his upper extremeties, met with his new geneticist for testing and to help us manage his care, are calling for an appointment PT doc who has dedicated her life to the rehabilitation of kids with disorders like this who won't treat him but will give him the necessary prescriptions for the course of PT he should get and for the necessary splints and braces he should have to help open his little hands. We have appointments for MRIs this week to get a better look at his hips and Calebs hips too just to make sure his are not dislocated because he was breech, an appointment for new casts for the week, and will get an apppintment for the spine center to talk about what we can be doing for the scoliosis. It looks as though we will be spending lots of time at appointments and with doctors. We are assembling our "team" of docs now and attempting to get a schedule for the therapies and various things we need to do. And at this time, Caleb is just along for the ride with his brother. Lucky for us, he seems to love his car seat, the stroller and sleeping while we are out and about, so its been easy carting them both around.

The GOOD NEWS is that none of this has affected his major organs. His echo, brain scan, kidneys, liver etc... are all normal so far. So we are very hopeful that this is all orthopedic and will require tons of work on our part and Owens but that with therapies, braces, casts, exercises, hopefully minimal surgery, and lots of determination on all of our parts, we will overcome or at least improve the majority of these conditions. We hope. Which is all we can do right now, in addition to all of the abovementioned appointments.

We are so thankful for the support and help that we have gotten thus far from our families and friends. Not only have people come to stay, come to visit, come to give us a break, cooked food, watched Gavin and helped clean, we have gotten tons of emails and calls of support and offers and well wishes. So thank you to everyone. You are really helping to keep Nick and I sane and we cannot tell you how much we appreciate it all!