Friday, August 1

I will try to re-cap the past two days, although so much has happened that it is difficult to remember it all. We were overjoyed on Wednesday when we were told that Erin was doing so well she could go home on Thursday. Thursday afternoon, her room had the atmosphere of the last day of the school year. Everyone was upbeat, people from the NICU ward kept coming and going to wish us well, and everyone was having as much fun as you can have in the NICU. We were so happy on Wednesday that night nurse Haley was working the day shift and had Erin. Haley's friend Melissa, who had Erin the previous two nights, was also working in our room, adding to the festive atmosphere. We have found a nanny that we are particularly excited about, and she wanted to meet Erin, so Priscilla came by on Wednesday in the morning to spend time with Erin. She loved Erin so much that she held her for over three hours, and left only reluctantly. She also asked if she could come by this next week (she doesn't start until August 11) to see Erin. It was funny listening to Haley talk about her "replacement." Haley has taken a particularly strong interest in Erin. Luckily, she only lives a few blocks away, so I imagine Haley and Erin will see a great deal of each other.

We felt so good that we packed up at shift change, Sheila went to dinner with some friends, and I came home to rest up.I did make the mistake of calling Melissa to see how Erin was doing after two glasses of wine. When Melissa answered, I could immediately here Erin screaming in the background. Turns out that I managed to call just as they were taking her PIC line out of her arm. The PIC line was surgically implanted, and Erin had to be restrained to keep from moving as they took the line out of her delicate arm. Erin hates to be restrained, and thus was voicing her firm opinion of what was being done to her. Bad timing for a call.

Thursday, we showed up bright and early bearing gourmet cupcakes and cookies for the entire floor, and hoping for a quick getaway. Cardiology had already been there and given their sign off on Erin's discharge, so we only had to wait for rounds when the attending would write the order. The festive atmosphere of the previous day continued. One of Erin's other regular nurses, Nurse Laurel, was our nurse for the final day. We have been so lucky in that the nurses we had the most - Laurel, Julie, Sarah, and Haley - were all favorites of ours. All of them gave us their contact information and asked us to keep them up to date on Erin's progress, and to stop by whenever we were in the hospital so that they could see Erin.

Our trainer Tim Allegretti and girlfriend Barbie came by about noon to see Erin. They had no more than gotten their first look at Erin when we saw the attending come in. We were excited as we thought she was coming in to tell us we could go. Instead, she said that there had been a development, and she asked if we could go somewhere private to have a conversation. We walked to a parents waiting room, and it seemed to take a lifetime to get there. There are times when you just know, and this was one of them.

Dr. deRegnier had taken Robin Steinhorn's place this week as attending neonatologist. She had the unenviable task of telling us that the radiology department had apparently miscommunicated the results of Erin's MRI. Instead of a clean bill of health, it showed that she had suffered a stroke at some point. I won't cover the same ground I did in the previous post. Needless to say it was a very traumatic moment. We were both in disbelief that this was happening literally at the time we thought we would be going home. We were told that we needed to have a neurology consult, and that they wouldn't be available until late afternoon.

When we returned to the room, Sheila left to take a much needed walk. I was so concerned about her, as she was on her last reserves before this news. During her walk, cardiologist Jeff Gossett came up to talk to me. Jeff is our favorite doctor, in part because of his beside manner. Jeff had a patient who was receiving a heart transplant that very afternoon, and yet Jeff took the time to come up and sit down and talk to me because he cares. We discussed what everything meant to Erin. From a cardiology standpoint, it means nothing changes with her care. Babies that have a shunt put in sat between 75 and 85. Erin does that already without a shunt. I even got a picture of her pulse-ox monitor showing her sat level hitting 100, which it did twice Thursday morning. The fact of it is this type of stroke is not uncommon in cardiac babies. They only started doing brain scans prior to surgery for cardiac babies 10 years ago. During that time, they have noticed a frequency of these types of infarctions. Cardiac babies often have neurological issues, and the thinking is that it comes from these strokes.

The rest of the day was completely depressing. We had a couple of interns come up and examine Erin, and then finally five members of the neurology department arrived. Dr. Goldstein was the lead, and he examined her and then discussed things with us. Bottom line - we won't know what all this means for Erin for months, and perhaps years. We don't know if it is a brain injury that will heal with little remaining evidence that she had the stroke, or if it is brain damage that has a more pronounced impact. Right now, she shows no evidence whatsoever. She has very good motor skills, and passed all of their tests with flying colors. Dr. Goldstein explained that if an adult had this stroke, their brain would not recover totally and there would be significant permanent impairment. Babies are much more resilient, and because their brains are not fully formed, it is possible that if one area of the brain is damaged, another area will assume the functions of the damaged area, resulting in little impairment.

For now, the course of treatment is to examine her blood to see if there is evidence of a neurological event, and then to do a ct on her brain. That requires her to be sedated and intubated, and so we are going to wait on that for several months. She will begin to see a physical therapist to determine if her development is progressing normally, and take proactive steps if necessary.

Bottom line - she has a heart issue. We won't know the extent of how serious it is for months or years. We will watch it every day, see doctors every week, and walk on eggshells. And she has a potential brain injury. We don't know how serious it is for months or years. We will watch her everyday, see doctors and physical therapists, and walk on eggshells. When it rains, it pours.

Needless to say, the joy we thought we would feel when we finally left at 7:30 last night was very muted. We were excited to bring her home, but it was a very different feeling than we were expecting. I hate being negative, so I will try to put up a final post later when I have a little better perspective on things.