January 15, 2009 - First 2009 update

It is hard to believe it is 2009. I remember as a young boy thinking that when 2000 rolled around, I would be old. I was right. Now it is almost a decade later and I am really old! Good thing I have a six month old to keep me young.

Since my last update, Christmas and New Year's have come and gone. We had a wonderful Christmas with Sheila's family in St. Charles. Erin was her usual happy self throughout the day. On the 26th, we left to spend some abbreviated time in Scottsdale. Erin was terrific on the flight down. As anyone who has traveled with an infant knows, the landing is where a baby normally has trouble as they can't yet equalize their ear pressure. Erin solved the problem by sleeping through the landing.

She adapted well to a new home, and after a couple of days of adjustment, was an eating machine. She slept through every night for the two weeks that we were in AZ. It almost seemed too easy. We were lucky, through Sheila's diligence and effort, to find a terrific babysitter who coincidentally is also named Erin. She is a 21 year old student at ASU getting her degree in development...perfect. She sat for Erin three times and was wonderful, giving Sheila and I some much needed R&R. The funny part was New Year's Eve. Erin (the sitter) wasn't available, but her Mom offered to babysit. We invited her and her husband, a former captain in the Brooklyn police department, and set out a spread of food for them. They were terrific babysitters, and stayed late into the night allowing us a fun night out for NYE.

While we were in Scottsdale, it was apparent that Erin was outgrowing her car seat. We upgraded her to a larger seat and she was much happier. While we were at it, we bought a jogger for her and Sheila took her for a fun almost every day. I think Erin slept through virtually every minute of the runs, but she always seemed happy afterwards. Of course, she is always happy so I am not sure if she noticed! We also took the time to wean her off of her swing, which has now been mothballed permanently. She now takes all naps in her crib, whereas previously she needed to be in the swing to fall asleep. I do miss seeing her swinging away, sound asleep while holding onto Bunny. The upside to this is that we have our family room fireplace back in Chicago (the swing sat right in front of the fireplace).

We took our time in Scottsdale to get Erin out more than we have in Chicago. We took her for lunch at our Country Club 3 - 4 times, which she seemed to enjoy. We began learning the lesson that you have to quickly remove everything from her reach at the table. She is going through the stage where she would rather play with anything of yours than one of her toys. It is pretty hysterical watching her grab for whatever she can reach. We took her to dinner one night with our good friend Tom Kaufman, and although she had a rare fussy period, she was just fine.

Our return trip to Chicago, necessitated because of my work and Erin's need for scheduled Dr. visits, was also uneventful. She was perfect on the plane, and passed the landing by sitting in my lap yapping away to me. When the plane touched down, she looked around in surprise, wondering what had happened. Her ears apparently didn't bother her at all.

A week after our return, we lost Erin's night nurse, Melba. Melba left for a much needed month long visit to her home in the Philippines, and upon her return will become the full-time nanny for friends of ours who are having twins. She will remain available for weekend babysitting duties, but we will miss her very much. She was so good with Erin. Her goodbye was very difficult for everyone. I can't imagine spending almost six months with Erin and then having to say goodbye. We are lucky we will have her for babysitting duty but we will miss seeing her arrive every night and watching Erin light up at the sight of Melba.

At the Dr. visit yesterday, we were thrilled to learn that her weight was 15.72 lbs, meaning that she has put on an entire pound in a month. Her height is 27 inches, putting her in the 90-95th percentile. Erin had two shots for various vaccinations, which didn't go over too well as you might imagine. True to form, she was back to laughing in about 3 minutes. She showed no effects of the shots the balance of the day. Last night, we had a daddy/daughter day as Mommy had plans of her own. It was great fun hanging with Erin. She is sitting up now pretty much on her own, and loves to sit and play. I never tire of observing the curiosity she has for everything around her. Erin is like a little sponge, absorbing everything and missing nothing.

Following this post are a number of photo updates. It constantly amazes me to go back to the first blog posts and look at what Erin looked like in the hospital, and compare it to now. I now know exactly what people have meant when they say it all goes by too fast.

Update 4 - December 17, 2008

I can see the wine...I just can't get to it!

It has been awhile since I put up an update on how Erin is doing, and with her recent Christening, Thanksgiving, and doctor visit, I thought this would be a good time to do one. I have so many pictures to put up that this update will take the form of several updates. Just keep scrolling down to see all the updates with the December 17 date. There are a total of four separate updates.

Life with Erin continues to get better and better. She seems to change every day, adding new tricks to her repertoire. Her out-sized personality continues to grow, and she is generally happy with very few fussy periods. The only times that she gets fussy is when she is tired. Beyond that, her face seems frozen in a permanent smile. Walking in the door and seeing her waiting with a huge smile are the best moments I have.

Erin can entertain herself, and enjoys lying in her jungle playground, playing with the hanging toys while talking away to herself. It is hysterical to watch her sometimes.

Erin seems to really love being around people. During dinner parties, she enjoys sitting in someone's lap taking in all of the conversation and action around the table. She enjoys seeing people who come to visit, and never seems to tire of being held.

As for her health, she is continuing to defy the odds and confound her doctors with her health. Her development in learning to use her right hand and overcoming any effects of the stroke has been excellent. Sheila and Priscilla have worked tirelessly with her to get her to focus on developing the same level of motor skills on her right side that she exhibits on her left. It isn't perfect yet, but unless you know what to look for, you couldn't tell that she might have an issue.

We had an appointment today with cardiologist Dr. Jeff Gossett to do her six month follow up (can it really be six months?). He was thrilled with her progress. She weighs 14.70 pounds, and is very long (ok, I can't remember the actual measurement). Her ekg was excellent, and her echo made him very happy. In short, for whatever reason, she is getting full flow from her pulmonary artery to her lungs. She continues to shunt blood from right to left, but there is very little if any leakage in either her pulmonary artery or the malformed tricuspid value. At this point, Jeff can rule out with virtual 100% certainty the most radical of heart procedures that she would need. This is a huge victory, as the procedure (known as a "fontan") would have potentially left Erin with what is known as a one-chamber heart (one chamber on the right side versus the normal two chambers), and would have a significant impact on her development, life expectancy, and quality of life.

Jeff tells us that we are now most likely into "years" when thinking about when she might need heart surgery of some fashion. It could be as simple as closing the ASD hole she has, or it could be the replacement of her defective tricuspid value. It is still open heart surgery with all the risks attendant to that type of surgery, but her odds are significantly better.

I spent some time walking Erin around the halls of the cardiac floor at Children's today as we waited for the results of her echo. I was struck by the differences in her in just a few short months. Today, she is alert, taking everything in with her eyes. She is very curious and wants to see and taste everything (especially fingers). She maintained her composure throughout the visit, never crying once until the very end when we had to wake her up to get her snowsuit on in order to leave. She was perfect throughout the echo, thanks in large part to Sheila who laid down with her and kept her entertained and calm.

We do plan on taking her to Scottsdale on December 26, maintaining the schedule we have kept for the past 11 years. We will spend most of January and perhaps a good bit of February in the warmer climate, although we will need to return to Chicago for an appointment for her RSV and other shots.

As we close 2008, a momentous year from a number of standpoints, we want to again thank everyone for their support, prayers, and well wishes for Erin and her health. This year featured the highest of highs and the lowest of lows, but ultimately everything is measured against the joy that Erin brings into our lives on a daily basis, and that makes it our best year ever. We wish everyone the happiest of holidays, and hope that 2009 brings the best year yet for all.

Update 3 - Erin's Christening

Erin's God Parents, Maureen and Mike Niski

I love this picture

She loves to be held in the air

Sheila's family

Monsignor Velo and Erin

Grandparents, God Parents, Parents, Monsignor, Baby

Erin's Christening bonnet

Erin's Christening took place on Sunday, December 14 at St. Michael's, located a block and one-half from our home. It was a wonderful event, and very sentimental for me as it was where my friend Emmett Steele was memorialized after he died in 1995. Monsignor Ken Velo agreed to conduct the service, which was a thrill for both Sheila and myself to have someone of his stature presiding. He is a wonderful man who never forgets a name or fact, and was introduced to us years ago by my friend Peter Garvy.

Throughout the private service, Erin never cried once. The only noise she made was to try and talk along with Monsignor Velo as he went through the service. I guess she thought that it was only right that the star of the event be heard!

We asked Sheila's sister and brother-in-law Maureen and Mike Niski to be the God Parents. They have raised two amazing girls and are the perfect choice for Erin. Incidentally, their daughters Caroline and Megan were both starters as a junior and freshman respectively on St. Charles High School's girls volleyball team. They gave everyone a thrill by winning the state championship in November.

Update 2 - Thanksgiving

Two stunning beauties!!!

I love this picture.







We took Erin to meet my parents for the first time over Thanksgiving. We had been hesitant to go any sooner as the trip involves a four hour car ride, and we were concerned about Erin being constrained in the car seat for that long a period of time with her health issues. At it turned out, it was a non-issue and she did great.

She was happy throughout, with the exception of getting a little fussy on Thanksgiving which we chalked up to her being off her schedule. My parents were thrilled to meet their first grandchild, and it was very emotional for me to introduce her to them.

Update 1 - December 17, 2008 - photo's only

November 15, 2008

As I write this, Erin is going to sleep in her swing. It is a good way to end an extremely lousy week. She and I are home alone, as Sheila is driving to Bloomington to watch nieces Caroline and Megan play in the state girls volleyball championship game. They are absolutely amazing. I wish we both could go, but we don't want to subject Erin to the long drive.

She has made some progress this week with her right hand, thanks mostly to Priscilla and Sheila's diligent efforts to get her to continue to improve her dexterity. They have worked with her all week on reaching first with her right hand, opening it all the way, and holding various toys. At night, Erin has been noticeably tired from the schooling that Priscilla is putting her through. It has been a mixed bag, as over the week following the appointment on Monday (see last update) we have been keenly aware of her issues, but also seeing some improvement.

She is eating food now, having a bowl of oatmeal in the morning and a bowl of rice at night. She doesn't like the oatmeal, but seems to enjoy the rice. Watching her eat is a sight, as she gets the food all over her. She needs to be continuously distracted to get her to laugh and open her mouth to accept a spoonful, and Sheila and Priscilla have resorted to creating a dinner theater of pantomime and other skits to entertain her while she eats. It is hilarious to watch.

Erin's personality continues to grow by leaps and bounds. She is very outgoing, happy virtually all the time, and extremely expressive. The photo's have all been taken in the past week, and give but a small glimpse of who Erin is. One of these days I will get creative and post some video of her, when I have the time. There doesn't seem to be much of that these days.

Update - November 11, 2008

We took Erin to her four month NICU follow-up yesterday. The purpose was primarily to check her vitals, and to see how the stroke might be manifesting itself.

The concensus of the doctor and physical therapist was generally the same thing we have heard from the Early Intervention folks and physical therapists that we have seen. Her right side is just slightly less developed than her left. She tends to reach first with her left hand, and her left hand opens more easily than her right, which tends to remain clenched. However, and they emphasized this, it is a) too early to really tell much, and b) they are really reaching to come to these conclusions. The doctor said that her feeling was that 50% of the professionals that examined Erin wouldn't notice any difference between her left or right.

The other point that was made in the appointment was just how advanced Erin is, both physically and from a personality standpoint. She is outgoing, happy, and pushing the envelope in every way. When she is on her back, she tries to sit up with such intensity that you can see what a little fighter she is. It is probably one of the principal reasons that she is doing so much better than predicted.

It is hard to reconcile when looking at Erin and seeing how well she is doing that she has significant ongoing medical issues. Sometimes when the thought occurs it is jarring, because you can't imagine that she isn't perfect. It is especially difficult when you think that she has a long road ahead, and will most likely involve hospitalization, surgery, and physical therapy. But for now, she continues to be an amazing miraculous story, and we are thankful for every day.