DS Awareness-Kolby's story

In honor of October being Down Syndrome Awareness month, I thought I'd post Kolby's story. It may be long and boring, so feel free to skip if you'd like;)

I found out I was pregnant the very end of Aug 07 when I was 4 weeks along. From then until 14 weeks I had bleeding or spotting resulting in 1 ER visit, 2 doctor appointments and a total of 3 ultrasounds during this time. Every u/s showed the baby's heart beating away but the doctor informed us that the placenta wasn't all the way attached and there was a chance of miscarriage.

Once the bleeding stopped the rest of the pregnancy proceeded as normal. I did skip the 20 week u/s because our insurance wasn't covering my visits. I was preparing to go overdue with this one since I was induced at 41 weeks with Landyn.

I went into labor Wednesday, April 16th at 37.5 weeks. Our baby boy was born at 11:55 PM and after trying my hardest to get Eric to agree to a different name (lol) we named him Kolby Mathew. Mathew honoring both my dad-his middle name- and Eric's uncle Matt who had passed away a couple months before.

The 2 nurses were pretty busy working Kolby over-but since part of the NICU team was in my room when Landyn was born I was just thinking how much more relaxing it was this time. I did wonder why he wasn't crying, but since he looked alert I figured it wasn't a big deal. Eventually they quit the poking and prodding and handed him over.
Later that night, when Eric and I were trying to get some sleep the nurse came into our room and informed us they had put Kolby on oxygen due to low levels. Eric and I joked that at least we remembered them telling us this time-when they put Landyn in the NICU the nurse claims she told me but I remember waking up and wondering where in the world he was!

The next couple of days blurred together so this next part may be off a bit:

Thursday morning the nurses and I tried our hardest to get Kolby to nurse but he wasn't having it. He was much more interested in sleeping than eating. I believe it was this day that I was studying him and mentioned to Eric that Kolby looked like he had Down syndrome. I looked at his hand since pretty much all I knew about DS was the one palm line, but his hand was normal so I rejected the idea. Kolby was back in the nursery on the O2 when a pediatrician came to talk to me. He asked if I had heard of Down syndrome-I excitedly told him yes and told him that I mentioned to Eric that Kolby looked like he had it. The doctor said "well, we really don't think that's what it is, but we'd like to send off a test just in case." Great small town doctors we have, hey?

Friday the doctors were consulting, running gestational age tests, and trying to figure out why Kolby's oxygen wasn't sustaining and why he didn't want to nurse. Kolby's doctor asked my permission to give him formula in hopes that might perk him up and get him to nurse. It did make him a bit more alert for a little while. He must have picked up nursing sometime this day because I know he was a great eater the whole time in Sioux Falls.
Saturday morning Kolby's doctor informed us that they thought he'd do best in a NICU-to get to the bottom of what was wrong with him. I believe she thought he had DS but didn't want us to worry in case it was something different. She did make sure we knew that he was being tested for it, and I purposely didn't ask her opinion on the matter. We chose the Avera hospital in Sioux Falls and the ambulance crew was up from there in a few hours. We quickly ran back home to pack before following down there.

The moment we set foot in the 3rd floor NICU a doctor was there to see us. He told us Kolby could have one of two things: either an infection (since I was Group B positive) or Down syndrome. I remember the nurses looking at us as the doctor was explaining to us what Down syndrome was. As the doctor wound down his speech and turned to go I asked him what he thought it was-and he told us he was almost positive it was Down syndrome. I wondered how we could stand there so calmly when we were hearing news that our son would never be 'normal'.

The nurse there for the shift was awesome and answered a ton of our questions, showing us Kolby's markers for Down syndrome and then gave us a tour of the 3rd floor. What made me know everything was going to be okay was the next nurse on duty. She was studying Kolby, answered a few more of my questions, then casually mentioned that she had a 3 year old niece with DS. She didn't act like it was a big deal at all and that was a huge relief.

The next week was spent waiting to get out of the hospital. We had a ton of visitors and alot of phone calls which helped the time pass quicker, especially since Eric was working during the day. Amazingly enough, he was framing in Sioux Falls during this time:).

We finally went home 1 1/2 weeks after Kolby was born.