Saturday, August 2

Erin's home for 2 of the 5 weeks.

Erin meets Nanny Priscilla for the first time. It was love at first sight.

More of Erin's home.


Nurse Hayley, one of Erin's favorite nurses.

Erin passing the car seat test, a requirement prior to discharge.

Nurse Melissa and Erin.

Hayley and another Nurse Melissa, who was Erin's night nurse her first week.

Nurses of the NICU!

More nurses of the NICU!

Nurse Helen, and Dr. Raye Ann deRegnier, Erin's neonatologist for the last week.

Sheila holding Erin for the first time with no wires or tubes!!! Ready to go.

Nurse Linda and Sheila holding Erin

Erin in her car seat, ready to leave. "Let's go Dad. I am so out of here!"

Erin at home sitting up in her boppy. Happy and loving life.


Well, Erin is home. It seemed that this day would never come. She was born 5 weeks ago today. It seems like it was in another lifetime. Life before her seems almost surreal. We have spent every single day for the past 5 weeks at her bedside, from morning to night. It can’t help but change you.

Leaving the hospital, walking in the door and taking Erin up to the room that Sheila has so lovingly created for her was perhaps my biggest thrill ever. And in a life overly blessed with great moments and wonderful thrills, that indeed is something very special. Erin is safely ensconced in her new home, free of wires and leads, no connection to any machine whatsoever. We have a pulse ox machine that we will use daily to measure her oxygen saturation levels, but that is precautionary. She looks great, sounds better, and is everything we dreamed she would be.

She is doing well at home. She seems healthier and happier. Yesterday, we both had her laughing while playing with her. A smile from her seems to be God’s greatest gift right now. She is even sleeping well, waking up only once both nights, eating and going right back to sleep until 7:30 am.

By all accounts, Erin is somewhat of a miracle baby. She has beaten the odds every step of the way. When she was initially diagnosed with Ebstein’s, we were told that we needed to very carefully consider our options, which included terminating the pregnancy. It was felt that her Ebstein’s was potentially so severe that there was a good chance she might not make it to birth, or perhaps die shortly thereafter. If she made it, she would undoubtedly need immediate surgery to insert a shunt. The shunt would be a prelude to two additional surgeries, surgeries that would leave her with what is known as a one-ventricle heart. That heart would preclude her from many of life’s normal activities, including potentially from having her own children.

Instead, she has beaten the odds by doing well enough on her own to leave the NICU after 5 weeks without any surgery. We don’t know what the future holds. Additional surgeries are a strong possibility. Perhaps they will be relatively minor, such as a catheterization to close the hole in the top of her heart. Or perhaps she will ultimately need to have her valve replaced and have a major reconstruction of her heart. Or best of all, perhaps she will continue her miracle performance and continue to improve to where no intervention is needed. Hopefully, there will be no residual effects from her stroke. Only time will tell.

I started this blog initially as a way of communicating with close friends, family, and business associates in an effort to keep those concerned apprised of Erin’s condition and progress. Spending 12 – 14 hours per day in the ICU, I didn’t want to be faced with having to make a dozen calls on my way home to repeat the same story each time. Somehow, it has morphed into something far beyond a simple communication vehicle. It quickly became apparent to me that writing the blog was a cathartic release of stress. During the worst moments, sitting down with my laptop and forcing myself to try and construct cogent thoughts to put on paper helped to take my mind off the emotions I was feeling at that particular moment. Frankly, I tend to be a very private person, and never intended to share such personal and intimate thoughts. What changed all of that for me was the realization that writing the blog was far more than a personal outlet for the emotions and stress I was dealing with. Ultimately, it is a record of my daughter’s journey into this world, and perhaps that will be of value to her someday. I have tried to capture the details of what she has been through, along with the ups and downs of daily life in the NICU. Where possible, I have included photographs of some of those who were so involved in Erin’s care. I intend to make a scrapbook for her that includes each and every e-mail that we have received, each note and card, and of course the blog itself.

I am not a gifted enough writer to paint a sufficient portrait of the incredible people who work at Children’s Memorial. These are people on a mission, whether they are a doctor, nurse, or administrative worker. They have an energy and vibrancy that permeates the corridors of this hospital, and can be felt as you walk through them. I wish I could name and personally thank every single professional with whom we came in contact during the course of Erin’s care. In a strange way, I will miss this the daily routine of the NICU. We will be spending a good deal of Erin’s life at Children's on follow up appointments and routine checks, but it won't be the same. The people who work here are truly angels. We are better for knowing them.

My nature is to always try and find something good out of whatever comes my way. Often, it takes me awhile to do so. In this case, it was pretty easy. Obviously, we would have done anything to have Erin be perfectly healthy at birth. We weren’t given that choice, and since you play the hand you are dealt, here are a few things that I think are worthwhile takeaways.

First and foremost, we have both had the opportunity to bond with Erin in a far deeper fashion than we would have had she come home at birth. I can’t say that her growth and development is any better or worse than it would have been otherwise. But we have spent literally hours and hours staring into her eyes, holding her, and letting her know how loved she is. That has to be worth something special, for all three of us.

Sheila and I have always been extremely close. I have been lucky in that I married someone so special in every way, and someone who is so easy to live with. But this experience has brought us even closer. I will miss spending all day, every day with her. We have eaten lunch and dinner together virtually every single day for 5 weeks. There hasn’t been a single cross word or hint of tension between us during that entire time. I am thankful for being with such an incredibly special person who has been so very supportive and loving every step of the way.

And finally, we have been the beneficiaries of some of the best parenting advice and education that money can buy. The nurses in the NICU are world class at understanding and dealing with baby issues. That is all they do, every single day. We have received so many tips and helpful hints over the past 5 weeks; it almost feels like we have been through a graduate level course in baby.

We can’t possibly thank everyone enough for their thoughts and prayers. One of our friends who hails from Baton Rouge even had her mother’s Baptist prayer group praying regularly for Erin. Trust me, it was a diverse group of people praying for her and thinking good thoughts. It clearly helps, in ways that I can’t articulate.

And so, for now at least, the story ends. From time to time I intend to update this for Erin’s and our benefit, but I won’t be posting daily anymore.

Finally, thank you for your interest. We are eternally grateful to everyone for all of your support. You have helped to make a difference.