After being inspired by my sister's blog, I have decided to venture out of my comfort zone and start one of my own. A lot of people blog about what is on their heart, and for the past year and a half that topic has mainly been one thing for me: my son.
For a child with whom my pregnancy was virtully uneventful, Josiah has a rather busy story. On Thanksgiving day, 2009 we found out that we were unexpectedly expecting a baby. After it had time to sink in, we were so excited. It was a very normal pregnancy for the most part. I did have severe morning sickness for the first 3 months, but took that as a good sign because they say it can be a sign that the pregnancy has 'taken'. After that, it was a breeze.
Our first ultrasound at 20 weeks showed that our baby's ventricals in the brain were measuring enlarged and there was some mild hydrocephalus (water on the brain). We were told not to worry and just come back for another ultrasound in 10 weeks. So week 30's ultrasound came and the ventricals measured in the normal range, praise the Lord!
About 4 weeks later, on July 4th at the end of my 34th week of pregnancy, I woke up with a really odd pain in my side, out of the normal swelling, dizziness and my heart was racing. I pushed it off during church, but it progressively got worse. So we headed to the emergency room, and at the end of the day all of my tests ended up normal and all of my symptoms went away. But we found that our baby was now diagnosed with Agenisis of the Corpus Callosum (ACC) and his ventricals were enlarged once more. Our doctor prayed with us and for us, and also reminded us that this is the time when we realize that he isn't ours, but the Lord's. (Praise the Lord for her!).
She sent us down to Aurora Siani's Maternal Fetal Medicine to confirm the diagnosis the next day. Josiah did have ACC - a bundle of nerves in his brain that helps the two sides communicate never developed. This started an almost 3 week journey of ultrasounds three times a week because Josiah's heart rate would drop with every braxton hicks contraction I would have.
Our doctors decided, due to his heart as well as the fact he seemed to have stopped growing at about 32 weeks, that they would deliver him on Monday, July 19th 2010 when he would reach full term officially. I checked in at about 9:15am that morning. They hooked me up to the monitor and a few minutes later the nurse came back with puzzled look on her face. She asked if I knew I was in labor, to which I replied, no I don't feel anything going on. I guess I was having contractions less than 3 minutes apart and never knew it! By noon my contractions were less than 2 minutes apart and I was starting to feel some discomfort, but they made the decision to do a C-section for Josiah's sake.
At 2:19pm, Josiah Allen Behr was born weighing only 4lbs, 1oz and 17&3/4 inches long. What a peanut! They promptly took him away to the NICU to run tests and take care of him, and that is where I first got to hold him...6 hours later. At the time, they were the longest six hours of my life.
The next week was a blur. We found out one diagnosis after another - most were surprises. In order, they were: Enlarged ventricals, Hyrocepoulus, ACC, Factor V Leiden mutation (a blood clotting disorder where his body doesn't know to stop clotting once it starts. We later found out that Dave has this as well.), a hole in his heart (VSD), a stroke in-utero a few weeks before he was born, and Down Syndrome.
Josiah had to stay in the NICU for about one month due to eating issues attributed to his low muscle tone (common in babies with Down Syndrome), but then was able to come home! We began our round of doctor visits, therapy, nurses and more. This was progressing very well until one weekend at the end of October.
Josiah was very fussy and not eating well, and something told us it was more than just crabbiness. We took him to an urgent care doctor in Plymouth, who took an x-ray (he wanted to look at his heart) and saw something on his lung. Because we had a relationship with our doctors at Children's hospital of Wisconsin in Milwaukee, he suggested that we drive Josiah down there so they could have his records on hand while figuring out what this round area was in his lung. By the time we made the 75 minute drive there, Josiah was very pale and panicking. It turned out he couldn't get enough oxygen and it was to a level that made the ER nurses rush him in. A few hours and an MRI later, he was diagnosed with a CPAM - congenital pulmonary airway malformation - cysts that grow in the lungs before birth. Three days later he had surgery to remove the cysts - one large and a few small - that had grown in the bottom lobe of his right lung. They were so large, they were taking up 80% of his right chest cavity, and his surgeon ended up removing the entire bottom lobe of his lung to be sure he got it all, leaving the upper 2 intact. He told us he wasn't sure how Josiah had made it to almost 4 months old living with a mass this large, and most of these are diagnosed on ultrasound before the baby is born! Our God is great...
More to come. I don't want to overwhelm you all at once. :)
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