Tuesday, March 15, 2016

Rose Elizabeth Tanory

Betty and I are really happy to share that our beautiful daughter, Rose Elizabeth Tanory, was born on February 24, 2016.

It's taken me a while to write about it because she was born seven weeks premature due to some complications with her stomach and pancreas, and it's been a whirlwind over here. We're so tired! And my "we" I mean "Betty." I'm not allowed to be tired, or so I've been told. Rose had a successful surgery to fix the stomach issues, and is currently kicking butt in the NICU. But more on that later.

Rose's name has some family history. Rose is Betty's middle name, and it was also the name of Betty's maternal Grandmother. By the way, Grandma Rose (aka Gama) was married to Peter (aka Baba). So two of our children are named after Betty's grandparents. Don't worry, I snuck some Tanory family names in there, too.

We had a lot of trouble coming up with a middle name for Rose. The main thing we had to consider was her initials. We couldn't have her middle name start with an A or an O, because then her initials would be RAT or ROT. Hey, this stuff if important!

We decided on the middle name of Elizabeth for several reasons. First, it's a beautiful name. Second, it didn't start with an A or O, so that was good. Last, both Betty and I have cousins named Elizabeth, and we want both of them to think that we named Rosie after them.

Regarding Rose's surgery, Betty's pregnancy was considered high risk because we lost our last child, James, to stillbirth. During the pregnancy Betty had several ultrasounds, and around week 28 I asked the ultrasound tech if she could look at the stomach. We wanted to make sure that Rose didn't have what James had, which was called duodenal atresia. Duodenal atresia is where the stomach is not connected to the small intestine, or when there is a blockage in the top part of the intestine called the duodenum that makes passing food from the stomach impossible. Duodenal atresia is also called the "double bubble" because it looks like two bubbles on the ultrasound.

The ultrasound tech and our doctors knew that something was going on, but couldn't tell us with 100% certainty whether she had it or not. It sort of looked like she did, but sort of looked like she didn't. And Betty didn't originally have the extra amniotic fluid that she had with James. We kept looking at it during each weekly ultrasound, and it seemed like each time we looked it was clearer that something was going on. As time went on, Betty ended up getting more amniotic fluid. But it always seemed like it wasn't exactly duodenal atresia, because although it had all the hallmarks of it, Betty and Rosie didn't exhibit any of the symptoms until much later in the pregnancy than what we experienced with James. We had already been through it once before and knew what to look for, and this was different - even if just slightly different.

It ended up not being duodenal atresia. Instead, it was what's called Annular Pancreas, which is where the pancreas grows around the intestine and constricts it. This was why the doctors couldn't be sure about it. It looked as if there was a blockage, but it wasn't the same sort of blockage. Had we not been specifically looking for an issue with the stomach, we wouldn't have caught it until after she was born. We would have known about it then because Rose would have not been able to keep any food down.

I really have to thank Betty's OBGYN and our doctors and techs at Maternal Fetal. It was a very stressful time for us as you can imagine, yet they were calm and kept us calm throughout everything. We knew what was at stake, and they helped us make what we believe was the right decision to deliver Rose early. We never got an answer on why James died - unfortunately, many families of stillborn children never do - so we didn't know if Rosie had whatever James had. But we knew that Rosie was not safe in Betty's belly anymore considering the amount of amniotic fluid that was in there.

We delivered at 33 weeks to the day. We were told that we probably wouldn't be able to hold Rosie after she was born because she might need help breathing. But she came out screaming. It was the best sound ever.

If you've ever lost a child, you understand. And if you haven't, let me try to explain: when you're at church and some baby is crying in the back, and you see people glancing out the side of their eyes at the family, whispering to take them out because how dare that baby annoy them while they're praying? Well... we love that sound. That's the sound of a healthy baby. We'd give anything to be able to annoy you with that sound.

So hearing Rosie scream... it was magical.

The day after she was born, she underwent a form of gastric bypass surgery. The surgeons connected Rosie's stomach to the jejunum, which is the part of the small intestine directly below the duodenum. I'm amazed that they can do this. If you personally know a pediatric surgeon, give them a hug or send them some Girl Scout cookies next time you see them. They may have literally saved someone's life that day - and given a baby a chance at life.

Our decision to try for another baby was not easy. Thank you to everyone who has been with us on our journey since James passed away. I'm not going to sugarcoat it... it's been hard. Our friends and family have been wonderful. And I don't know what we would have done without our community at St. George Church and St. George School, as well as Maddie's Footprints, Anna's Grace, Threads of Love, Now I Lay Me Down to Sleep, our Infant Loss Support Group, our therapists... you are all amazing people. Thank you for helping us.

Rose is currently still in the NICU, but like I mentioned before, she is kicking butt. She literally kicks her foot up in the air. It's like she knows!