Sunday, September 26, 2010

Going Going Going

It feels good to finally sit down and put my feet up. I feel as though I’ve been going, going, going…and I’m certainly no energizer bunny.

I’m incredibly happy to report that Austin is officially sleep trained. He sleeps in his crib and there are no tears. He’s been sleeping through the night lately…which is beautiful. Austin is such a morning person baby. He used to wake up at 7 in the morning, which is totally doable for this not so morning mommy. However, now that he’s sleeping through the night, he wakes up any where between 6-6:15. He has an internal clock, just like his Daddy.

Last week, Austin decided that he was going on strike…with his bottle. To say that he “refused” his bottle is an understatement. He threw a fit and acted like we were torturing him each time we held the bottle to or even near his mouth. The strange thing is: he devoured his baby food and fruit oatmeal. Formula is his main source of nutrition until age 1. I’m thankful he does well with solids, but they don’t contain the adequate calories/nutrition that he needs to grow and thrive! I took him to the doctor and they determined that it probably had to do with his teeth. I’ve been saying it for a while now, but he’s about to cut a tooth. The doctor said he’s showing all the signs. He’s just having such a hard time with his teeth.

Therapy is going well. We’re working extra hard and Austin is extra stubborn. There aren’t any tears, but there sure is a lot of screaming and protesting from my opinionated 7 month old. His therapist said that a lot of babies with Down syndrome are stubborn. My baby certainly is and it may have something to do with Down syndrome. On the other hand, I have to admit that he comes by it honestly. ;-)

The Buddy Walk is coming up in November and we’re so excited! One of my close and dear friends, Amy, convinced her company to be a corporate sponsor for our team, Austin’s Angels! Also, one of my other dear friends, Shannon, met her personal fundraising goal for Austin’s Angels in less than a month. I’m constantly amazed by how generous and caring people are. There are donations on our team page from people who don’t even know Austin or us. He has so many people who love and care about him and we are so, so thankful and grateful. It’s very important to Ryan and I that our family and friends treat Austin just like any other kid. That’s how we treat him. This has never been an issue because they all do. I know they’re aware that he‘s different, but they treat him like a baby first and foremost. You can tell that they truly love him…just for him. I’m constantly reminded how lucky and blessed we are for all the amazing friends and family -you know who you are!

Austin’s urology surgery is less than 2 weeks away. It will actually take place on my, *gasp* 26th Birthday. The best birthday present ever would be for his surgery to go well, with no complications and most of all, a minimal amount of pain for him. My parents will be in town for his surgery...we are so thankful for their help! They are truly the best parents and grandparents, ever.

Life is busy, but we’re lovin’ it!


Monday, September 13, 2010

Unplanned Anniversary

Several women become mothers after months or even years of trying. I don’t fall into this category because Austin wasn’t planned…or perhaps I should say he arrived a few years premature. We found out we were expecting 3 weeks after I purchased my wedding dress. Ryan and I always knew we wanted kids, but we planned to wait a few years. I’m sure you’ve all heard the saying, “If you want to make God laugh, tell him YOUR plans.” This phrase couldn’t hold more truth.

We are quickly approaching an anniversary. It was a year ago that we found out that the baby that was growing inside me was a little boy. It was also on this day that my OBGYN nurse took blood work for a Quad screening that I thought was “routine.” This test changed my entire pregnancy. I was never told that this test is completely optional and that a lot of women refuse this test due to false positives. The quad screen test is a maternal blood screening test that looks for four specific substances: AFP, hCG, Estriol and Inhibin-A. The results of this screening will tell if you’re at “high risk” for having a child with a Genetic Disorder based on the levels and your age. I knew when the nurse called me at work 3 days later that it couldn’t be good news. I felt my heart drop when she informed me that my Quad test came back abnormal and high risk for Down syndrome. Down syndrome. I had never thought about Down syndrome before…and why would I? I asked her what my chances were and she replied, “ 1 in 10,000.” She then went on to tell me that, “This office has never had a baby with Down syndrome based on a positive quad test. You’re young. You’ll be fine!” She referred me to a Perninatologist for a level 2 ultrasound. I went home and researched the quad test and noticed that false positives are common and most women go on to have perfectly healthy children. I also realized that my risk COULD NOT have been 1 in 10,000 because that's the complete opposite of high risk. Let’s just say it wasn’t the first time this particular nurse had no idea what she was talking about.

I had to wait a week before seeing the Perinatologist. It was the longest week of my life! It turns out, my chances were NOT 1 in 10,000. They were 1 in 105. The level 2 ultrasound only revealed that Austin had a thick nucal fold. Everything else looked normal. The Perinatologist gave me a 2% chance of Down syndrome and encouraged me to have an amniocentesis. I declined. I went back to see him a month later for a follow up. He said an amniocentesis would be a good idea so we could “go over our options.” The termination rate for a prenatal diagnosis of Down syndrome is 90%. I knew what he was getting at, but I stood my ground. I knew I would love Austin no matter what. I mean, he had fingers and toes…and really strong legs that kicked me. I could feel him squirming around. Down syndrome or not, he was meant to be mine. I tried to stay positive, but Down syndrome was always in the back of my head.

We didn’t plan this pregnancy and we certainly didn’t plan on having a baby with Down syndrome. We can thoroughly plan for the future, but ultimately we have no control over what happens. God gives you blessings you didn’t know you wanted. I’m at a point where I finally understand why God gave us a child with Down syndrome, even though we didn’t ask for one. Life is good. God is good.

P.S- We saw the Kidney doctor today for a follow up and there is NO obstruction. Austin's kidney function is great! He has a clean bill of health. We will go back in 6 months for a renal sonogram to make sure the swelling has resolved.

“For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope.”
- Jeremiah 29:11

Tuesday, September 7, 2010

Road Trip and Progress

A pit stop on our road trip.

We took a road trip to Kerrville to visit my parents for Labor Day weekend! Austin’s Nana and Papa were so excited to see him (and us!) He’s spoiled beyond belief when his Nana is around. It was so nice to see my parents, even if it was for a short time. They will be here next month for Austin’s surgery to correct his Hypospadias, so we’ll see them soon.

Austin and his Papa.

Austin had his Nuclear Medicine Renal Scan with Lasix this morning at Medical City Children’s Hospital. This was our first experience at Medical City Children’s and they were amazing! Austin did really well, considering the circumstances. The worst part was the fact that Austin couldn’t eat anything after 3:30 A.M, so he was starving! Check in was at 8:00 and the procedure itself wasn’t until 9:30. They started the IV at 8:30. As you can imagine, he wasn’t too happy. He was exhausted from crying and fell asleep until they came to transfer him to the Radiology room. They let me stay in the room until he fell asleep with the mask on his face. The procedure took a little over an hour and then he was sent to recovery We were able to go home about an hour after the procedure ended. We’ll find out the results on Monday when we meet with Dr. Q. If there’s an obstruction(which is what the doctor suspects), it will need to be repaired via surgery. According to the Pediatric Nephrology doctor, the kidney issues are NOT related to Down syndrome.

Right after they put the IV in. His tears broke Mommy's heart.

The IV and his tiny foot.

I wrote about Austin “not using his arms” a few weeks ago. It appears that the exercises are really working because he’s really starting to use those arms! He’s using his hands to grab everything that’s in his sight. This should come as no surprise, because he typically starts doing things out of nowhere…when I least expect him to. He grabbed his bowl of baby food and tried to throw it on the ground earlier today. I was so used to him not putting his arms on tray of his highchair, it was never an issue. I moved the bowl and he tired to do it again…and again…and again! Ryan and I were so excited to see him do this, although we know we’ll have to be more careful of where we put the bowl. Obviously, we won’t be too excited about him throwing his bowl of baby food on the floor on a regular basis. ;-)

I feel like I had so much to write about and suddenly lack of sleep is taking over…I hope everyone had a nice Labor Day weekend!