On June 16, 2004 I had an ultrasound at 26 weeks to verify gestational age because my measurements were off. I had had an ultrasound at 20 weeks and everything looked GREAT, only the baby was breech and so we couldn't determine the sex either. So we were really excited to get another ultrasound and we were hoping that baby would cooperate for a quick peek to see what we were going to have. Well, SHE cooperated and we got more news than we expected. After a long delay we were told that she had an "enlarged right atrium" and would need to talk to a genetics counselor. We were confused and angry and just didn't know what all of this would mean. We were set up with weekly ultrasounds and echocardiograms. At the first fetal echo it was determined that she did in fact have a huge RA, an ASD, pulmonary valve stenosis and Ebstein's anomaly. It was an extremely busy (and tiring) summer running to appointments every week but we did. I elected to have an amniocentesis to better prepare for what "could be" chromosomally wrong with her. My amnio came back normal. With great discussion, my OB decided it would be better for all of us if I had a scheduled c-section because I lived very far from the hospital and we wanted as little stress on our baby as possible. We had a consult with a wonderful neonatologist (Dr. Peter Serrao) who told us quite frankly to expect our baby to be blue IF she made it. So he prepared us very well for best case scenario and worst case scenario. Fast forward to August 30, 2004

I went in for my c-section and even though Dr. Serrao wasn't scheduled to be on that day, he came in. The nurses in the nursery later told me that they had all been prepared for my "case" because things could turn bad. You never really know the behind the scenes stuff until you hang out in a hospital for a while. Anyway, Erin was pulled at 8:10 and I heard my OB (Dr. Groff...who is equally as wonderful as Dr. Serrao) mumbling to the other doctors and I then heard Dr. Serrao CHEERING...she's pink!!!! she's pink!!! He let me take a quick glance at her and then took her away to start prostaglandins to prepare her for transport to Driscoll Children's Hospital for her B-T shunt. While I stayed at Spohn hospital, my husband went to Driscoll with the baby.

Erin was immediately put in PICU and the next day had her B-T shunt to address the pulmonary valve stenosis. She did very well and was back transported to the hospital she was born at (Spohn) to learn how to eat and heal up. Erin ended up staying in the nursery for 6 weeks. And we grew to care for this staff like they were our own family. On October 5, 2004 Dr. Serrao started his rounds and I said...."can we go home tomorrow?" He shook his head and said "are you comfortable taking her home with the NG tube?"  I said "Yes" (we had been taught how to insert and care for her with it) And he said "ok" and when I said "I'm scared" he said "It will be fine Mom!" Sadly I have to say, that was the last time I would see him because he, his wife and 11 year old son died in a horrific house fire a couple weeks later. We were just devastated. We took Erin home the day after like he promised and fattened her up with Similac special care 24 cal feedings and rice cereal. She was on a continuous feed pump through the night and her meds were Inderal, Reglan and a 1/4 tab baby aspirin a day. Things were going great.

In November 2004, we were going to the cardiologist bi-weekly and the time was coming that she would need a cath to tell us if she could have her second surgery, which would be a bi-directional Glenn. We found out that her ASD was actually too small and so we needed to act. On 11/22 as we were getting her ready to go for her pre-op studies, she choked at home and turned blue....we had to call 911 and were transported to the hospital where we were admitted and they kept the schedule that she would have the cath on Tues. 11/23 and decided to follow with surgery that day if she could take it. She ended up having a modified hemi-Fontan, a tricuspid valvotomy, a septostomy to open that ASD a bit and they plicated her right atrium. She was in PICU for 5 days and we were released from the hospital on 11/30 on our 13th wedding anniversary. She would be followed by her cardiologist every week for the next month

In January 2005, Erin had shortness of breath so I took her to the ER where we found out she had a pleural effusion (more specifically Chylothorax) as well as a pericardial effusion. They changed her 24 cal formula to Portagen 24 cal. Her triglycerides were 666!!!! We couldn't believe that. Anyway, yesterday 1-11-05 they decided, since she pulled her chest tube out that they would go in and drain the pericardial effusion with the pericardial window. She didn't respond as well as they hoped with the aspirin therapy. But she is already breathing better. She was admitted a week tomorrow so hopefully we'll get to come home soon!

October 2005 Update

Erin just celebrated her 1st birthday and is doing great. We aren't sure if she will need the Fontan but will definitely need her ASD closed in time. She is growing and just started to pull up on things. She's a little behind physically but is really coming along nicely.

Erin has started P/T and speech therapy once a week and is doing well. Our family moved from Texas to Washington State over the summer and we are learning the ropes at Children's hospital in Seattle. Her first cardiologist appointment is scheduled for December 5, 2005.