2 months old

Jackson continued to progress and a little before we celebrated his 2 month birthday, we began serial castings in New Orleans with Dr. Accousti to correct his bilateral club foot. Jackson's 2 month birthday, just happened to fall on his 1st Easter. With in the first 2 months we moved from a simple piece of gauze with roban wrap to hard plastic hand slpints! Who would have thought we would be here, because when he was born, his hands were so tight, we couldn't even get our fingers in there, and now he can grip well with his left and somewhat with his right!

We were able to get one bath in prior to the start of castings, his umbilical cord fell off the night before the first appointment. He really seemed to enjoy the bath part, now the drying off, not so much.

Our First Month

Within our first week home, we continued taking Jackson to therapy that was started in the hospital. In his second week home, we went to our first peditrician appointment and to see the pediatric orthopedic in Baton Rouge. We had a bad experience with him and decided that we wanted to see someone else. It's a long story, but the straw that broke the camel's back was when he told me and Jonathan "The only way to fix these children is with surgery". First of all he is not broken and secondly he is our child. So...we called our peditrician and asked for a referral to the same orthopedic who did my back surgery at Children's Hospital in New Orleans.

We set up an appointment and saw Dr. King, who referred us to Dr. Accousti for Jackson lower extremities and Dr. Faust for the upper extremeties. We continued our therapy regiment twice a month to physical therapy (PT) and twice a month to occupational therapy (OT) and continious therapy at home. And in one month Jackson had improved beyond all our expectations.

NICU

So at 1 p.m. on his birthday, I could feel my legs; I promptly told the nurse and she said that I had to wait until 4 o'clock to go down and see him, needless to say I was beside myself. However, they did say that Jonathan could come down and see him. Jonathan felt terrible about being able to see him before me, but I wanted pictures, if I couldn't go myself, so I made him go. He went alone the first time---I am not sure how he did it, but he found strenght inside of himself to see Jackson for the first time alone, something I am not sure I could have done! He came back up and had tons of pictures, he took close ups of the hands and feet, he knew mommy would want to see it all. At that point, we realized that the diagnosis of Distal Arthrgryposis was highly unlikely, since all joints were involved. The second person to see Jackson was my mother.

Finally, at about 4:30 I got to meet my baby boy. I was so overjoyed but also so overwhelmed! The same night Jackson was born we met with the geneticist. He told us that he does not believe that Jackson's Arthrogryposis Multiplex Congenita (AMC) is genetic. Arthrogryposis Multiplex Congenita is the new diagnosis we have been given. It is a general diagnosis that translate into "multiple joint contractures at birth". In order to get a more specific diagnosis, we would need to see the geneticist again and possibly one in Seattle (Judith Hall, who is the leading Arthrogryposis researcher), but that will come later, as the genetic diagnosis does nothing for us as far as treatment options. Simply, because what Jackson has is not a syndromic form (children with syndromic forms have other complications, which may include the need for a feeding tube, breathing tube, etc.).

Jackson spent the first eight days of his life in the NICU, we had a wonderful group of doctors and nurses, who all took very good care of him. On day four of his stay, mommy was sent home. It was one of the hardest things that Jonathan and I ever had to do. We left him in capable hands, but it was tough. On his sixth day of life and his first Valentine's Day, Jackson had surgery for bilateral hernias in his groin. Dr. Loppo sucessfully reparied both hernias.

Jackson spent two more days there and was able to come home at 8 days old. Jonathan and I were so happy to have him here with us.

Birthday

Ok...so I have decided after reading and thoroughly enjoying another special need's mom's blog that I would create one for Jackson...So what better place to start than his birthday! Jackson was born on February 8, 2007 at 8:14 a.m. via C-section, because he was breeched. Prior to my C-section at about 6 months along, we met with an anesthesiologist at the advice of my OB, as I have the metal rods in my back. This anesthesiologist told us that he would try an epidural as many times as I wanted (this was when we still thought we would not have a section). We discussed all the complications, etc. and we were set, I would get the try for the epidural as opposed to being put under, as Jonathan could not be there if I was under general anesthesia. So on the morning of the 8th, we arrive at the hospital at 6:30 a.m. we go in to be prepped and the nurse anesthetist (anesthesiologist assistant) comes in to talk to us about what is going to happen. Well when I hand her the folder with all the information about my back that the other anesthesiologist had told us to bring, she about faints! She apparently knew nothing about the rods, so she goes to get the anesthesiologist, who also flips out! But thank God we had a wonderful L&D nurse who fought for me and made the anesthesiologist at least try the epidural, so that Jonathan could attend the birth. The anesthesiologist told her that they had to get me to the O.R. NOW; about 30 minutes prior to when we were supposed to go back. So they roll me to the operating room and make Jonathan sit out in the hall. They make me climb on a skinny little table in all my glory at 9 months pregnant in a hospital gown! And I had read that you should lean into your nurse, so that is what I did. And let me tell you even though we didn't go natural as planned, I sure used the Lamaze class we had been to in order to breath through the epidural. In the middle of the procedure of putting in the epidural, they realized that they needed a hard needle, as they had to go through the rods. The nurse runs out in front of Jonathan, who told me he was praying so hard on the Hail Mary rosary I had left with him, but he couldn't remember the Hail Mary, so he just prayed real hard! Well, all those prayers and a wonderful medical team paid off---the epidural worked!


When my O.B. came back, she asked them to have the neonatal team ready, as we knew that Jackson had been given a diagnosis of Distal Arthrogryposis (meaning he would have club foot and hands) and that sometimes children with Arthrogryposis can need a trache. So they proceeded with the section and when Jackson was born, they all yelled "It's A Boy!" (this was the first time we knew the gender, we wanted a surprise) speaking of surprises, well Jackson gave all the operating team one, he peed on them! I heard him screaming and that was all I needed! Well, they whisk him away and we don't see him again! This being my first section, I didn't think it was that much out of the ordinary. So they fix me all up and tell me that they are going to take me out to see Jackson. And we wait and wait until finally my nurse comes back in and tells us that Jackson has some tubes and wires, but they are helping him, then they roll me out to see him. What a shocker! We later learned that Jackson had to be "bagged" (the green bag in the picture) to help him breath, as he had swallowed amniotic fluid on the way out. They let Jonathan and I see our family and then I went to recovery, being told that as soon as I could feel my legs, I could go to the NICU to see Jackson. Jonathan and our family went to my room to wait for me.