Saturday, July 21, 2012
Thursday, July 12, 2012
Since we have learned what hlhs is and how life changing it can be, we want to stop another family from suffering the same fate. We participated in several studies at CHOP when Olivia was first born, but wanted to do more. Brett found out about a research study that the Mayo Clinic in Minnesota is performing and applied. It studies genetics of the entire family including siblings. We received boxes in the mail and were supposed to simply bring it to a lab to be drawn. Simple enough, right??? How wrong we were. We made appointments at Quest. When we got there, they told us they dont draw bloodwork they dont process. We then called several other lab collection placea. No luck. Finally, we called and just went to the kids pediatricians office. When we got there, no one knew how to collect the blood and not charge us. They were able to locate someone who knew what to do and it was time. Olivia went first. She did great for the volume needed. Next was delilah....tears were flowing, but she didn't completely freak out. Nathan was last and laughed during the blood draw. He was thinking horrid thoughts ahead of time, so when it was nothing...he couldnt help but laugh. We packaged it all up, labelwd it correctly and went to get stuck ourselves. It helps to know people, because when we got to the lab a phelbotomist who knows me came out. He gladly drew Brett and my blood and even remembered us being on the news. Brett had a little more difficulty with the stick and a little digging but held it together in front of the kids. Finally we were done or so we thought.
We went to fedex but they dont accept blood for shipping at all locations. We found out where to bring them and finally we are free of the ordeal.
It is really sad that in order to help others, it cant be easy. It hasn't deterred us though. If the opportunity comes again...we will do it in a heartbeat. Our olivia is here because people 25-40 years ago let doctors research and study their babies.
Thursday, July 5, 2012
Exactly one year ago, I nonchalantly went to a fetal cardiac echo for a routine follow-up alone. Two hours later, I left the office desperately trying to keep it together. HLHS??? Really? Surely, they must be wrong I thought. Yet, I knew as an ob nurse they were pretty certain. Our lives, in the blink of an eye, changed forever. The emotions we have experienced have truly been a rollercoaster of sorts.
I can safely say though it has taught me more than I ever imagined. We have met so many angels in disguise. Whether it was Dr Spray, Dr Natarajan, nurse Becky, or any of the wonderful people who cared for our baby, we will always be in their debt. This experience had also introduced us to wonderful families who have been changed by hlhs as well. Without the Marrone's or the Lihn's, our quest for information would have taken twice as long. Lastly, Olivia with her hlhs has shown us how important it is to trust that everything happens for a reason and that we have some awesome family who are there when we need them.
Everyday with Olivia has been a gift. One, we definitely don't take likely. We look forward to watching her grow and learn. While the worst day of my life was only a year ago, it has also been one that I can't imagine not having experienced.