Thinking of Roo

This post is dedicated to R.J.P. who died all too soon last year on this date. We are thinking of her and her wonderful parents and three big sisters who loved her and miss her dearly.

Roo was born with the same birth defect as LC--a congenital diaphragmatic hernia (CDH). If you aren't one of the regulars around here, you probably haven't heard about it--neither had we until Aug 11, 2005 when she was born. In a nut shell, when the baby is developing their diaphragm muscle doesn't form or close all the way. This allows all the organs below the diaphragm to "migrate" into their chest. That is all fine and dandy, except the chest is already filled with organs that need to develop. Some major organs at that, say like your heart and lungs. So with all these "extra" organs up there the heart and lungs are restricted in their growth and development. When talking about CDH, it usually happens on the right or left side. Statistically speaking it happens on the left side about 80% of the time. LC's happened on the right.

When these babies are born, they either take a few weak breaths or are not breathing at all. LC's disadvantage was we didn't know about her condition before she was born, so when a full-term baby comes out not breathing you know something is wrong. I think her initial Apgar scores were in the 1-3 range. The hospital where she was born was not equipped for her, so she was immediately transferred to a larger hospital which was about 2 hrs and a state away.

We were transferred to Omaha Children's Hospital. We didn't know it at the time, but Children's had just recently gotten ECMO (something that some CDH babies require; its not pretty, its not a good thing, but it helps some live). Because they hadn't had ECMO before, most CDH babies went to another hospital in Omaha. LC was the first CDH baby Children's had seen for quite a few years.

We like to say LC started a trend. This isn't a trend like pegged jeans or jelly bracelets that is fun to follow. I don't wish CDH upon anyone. But one of those babies who followed in LC's footsteps a few months later was Miss Roo. Her family is from Omaha and found out about her CDH before she was born via ultrasound. She was born March 29, 2006.

Even though CDH is very serious, every child is different. LC went through surgery at 2 days old and was in the NICU for 6 weeks before coming home. Roo's case was much more complicated and her NICU stay was 300 days. In that time she and her family endured more ups and downs and complications and surgeries and specialists than you can imagine. Roo was the ultimate fighter, one whose strength and endurace I will admire for a lifetime. That also goes for her family who had three young girls at home during all of this.

Everytime we would go to Omaha for check-ups, we would hear about this other CDH baby. I ended up "meeting" her mom, Teri, online while Roo was still in the hospital. During one of our follow-up visits to the hospital, Teri gave me permission to see Roo in the NICU. What a girl! She wasn't quite sure about this stranger who had come to see her, so she was a little aprehensive. I am so glad I took the opportunity to meet her and see her and spend even just a few minutes with her.

Roo did get to go home from the NICU last year. She was still on the vent and had a host of medical issues, but she was home. And then she was gone all too quickly. A mother should never have to call 911 for her own child.

One of my biggest regrets was that I wasn't able to make it to her funeral. I had the trip all lined up, then LC got a fever. There were also some serious spring storms in the area. Teri and I have also tried to meet up, but again we can't get to the right place at the right time. Someday I will meet her and the girls IRL!

I pray that Roo left a lasting impression on all those who met her. I pray that all the medical professionals who worked with her learned something and took something positive away from her case. I pray that the next CDH babies at Children's benefit from what she went through and that the Dr's can treat them better because of Roo. I pray that her sisters always remember her, even though the youngest was just a year when she was born. I pray for peace to Teri and her husband who are apart from each other this year during this difficult time while he is doing basic training for the Air Force. I pray for every mother who has had to say good-bye too soon to their baby because of three awful letters.

You are missed, Roo. We won't forget you.