Still doing well

Erin is off the oxygen now, and her oxygen saturation levels are holding strong, so we remain hopeful that this is the first step towards coming home. She was so brave in tolerating the removal of the adhesive tape on both sides of her face that held her oxygen tube in. It was obviously very painful to pull the tape off of her skin, but she barely cried. Takes after her Mom!

Update: Potentially good news!

Today was a banner day. First, Sheila and I were able to spend a few hours just holding Erin. This was no small task, given the logistics of the "gear" that she has on. The nurses are unbelievably supportive and willing to take on almost any task for the benefit of patient or parent. It was such a thrill for both of us to hold her. For myself, it was the best moment I have ever experienced. It was over all too soon, but there is more coming.

We then received potentially very good news this afternoon. The resident came in to tell us that in the Dr's meeting, they concluded that the best course of action for Erin was the one we wanted most...to avoid surgery for now. They think that because she is doing so well, it is worth trying to see if the pulmonary artery will hold its own, at least until she is older and more developed. Surgery is still almost 100% certain, but perhaps not right now as a newborn.

The first step is to take her off oxygen. She has been weaned down from her original level to a very small level of oxygen to supplement what her lungs are able to generate. Now, she is going to zero supplemental oxygen. If she can tolerate this, then she will be weened off her medicine to see how she handles that. If she can handle no medicine and no supplemental oxygen, then she can come home, at least for now. Everything is very tentative, and conceivably she could come home and have to come right back. But we again remain optimistic, and hope for the best. She is a fighter.

All of your thoughts and prayers are working. We can't thank everyone enough. Please continue thinking good thoughts for Erin.

June 30, 2008

It is 4:30 pm on Monday, and I am sitting here next to Erin watching her sleep. It has really been a rollercoaster of emotions since she and I arrived at Children's on Saturday evening. Upon arrival, a cardiac fellow did another ultrasound on her, in order to get a good idea of what they were dealing with in regards to her Ebstein's. During pregnancy, Erin proved difficult to diagnose via ultrasound, as she was a very active baby. This ultrasound performed directly on her was no different! She was so active that they finally gave her a slight dose of a sedative to calm her down in order to get clear pictures. The Dr's viewpoint was that the Ebstein's was more severe than we thought, and that surgery was definitely the immediate option. However, they wanted another ultrasound in the am to get a second opinion. I stayed with the baby until very late, and then needed to go home and sleep.

Sunday, Erin had another ultrasound which showed a better picture than Saturday's ultrasound. The decision was made to discuss her case at the Dr.'s conference that is held each Monday afternoon. One potential outcome is that they might hold off on surgery to see how well the pulmonary artery might perform. Right now, she is on prostaglandins, a drug which ensures sufficient blood flow between the pulmonary and aortic artery. If she stays stable and surgery is not recommended immediately, they may try to wean her off the drug to see how she does. Best case would be to send her home in the near future and wait until she is older before the surgery is performed. Worst case is do the surgery now, and see. We are in waiting mode.

Erin is such a beautiful, sweet baby. She is quiet, sleeping a great deal, and not very fussy. When she does fuss, it is because she is being poked and prodded. She fusses just enough to register her displeasure, and then stops and endures the treatment. She is amazing in every sense of the word, and yes, I have turned into one of those idiotic over the top fathers who think that the sun, moon, and stars all revolve around my daughter. Last week, I wouldn't have understood. Today, it is my life. Life is such a long, strange journey.

As a side note, Children's Memorial is next to John Barleycorn, a long-standing Chicago bar. Coincidentally, it is where Sheila and I met on blind date. Last night, we took a dinner break and went to JB's for a quick bite of bar food and a beer. How strange to think 11 years ago we were there trying to figure each other out, and now we are there pondering our daughter's future.

Introducing Erin Racine Clary

Sheila and I are so thrilled to introduce our daughter, Erin Racine Clary, and to share her story.

The purpose of this blog is to communicate to our friends and family about Erin, and to update them on her progress. We thank everyone from the bottom of our hearts for all of their prayers, words, and support.


Erin was born at Evanston Hospital on Saturday, June 28 at 1:12 pm. While healthy at birth, we had previously received a diagnosis that she had a rare congenital heart defect known as Ebstein's Anomaly. The defect was diagnosed during her first ultrasound where we were able to get our initial glimpse of our Erin.

Ebstein's is a defect involving the tricuspid valve. More specifically, from the Children's Hospital Regional Medical Center of Seattle, Washington website:

'Babies with Ebstein's malformation have a tricuspid valve that isn't developed right. This valve is one of the doors in the heart that allows blood to go between the chambers.

The tricuspid valve is the door to the right ventricle. It lets blood flow in one direction and stops leaks in the other direction. The tricuspid valve normally has three flaps or leaflets.

In Ebstein's malformation, one or two of the three flaps don't move normally. Because the tricuspid valve is not formed right, it doesn't work well and blood may leak backwards into the right atrium (upper chamber where the blood comes in) with each heartbeat. This will make the right atrium get too large.

Often times there's also a hole in the septum between the atria called an atrial septal defect. This allows blood without oxygen to be pumped out to the body and can sometimes cause cyanosis.'

Erin has both the tricuspid valve issue, as well as atrial septal defect. In addition, as is commonly associated with Ebstein's, the pulmonary artery isn't properly developed. This is the artery that pumps blood to the lungs. Children with this defect are commonly described as 'blue' babies, due to lack of oxygen.

Surgery is a common option for dealing with Ebstein's. Typically, there is an initial surgery at birth to place a shunt between the pulmonary and aortic arteries to ensure proper blood flow between the two, allowing sufficient blood flow to the lungs. There can be additional surgeries to replace the valve with a pig valve, and to fix the atrial septal defect.