I slept hard for a few hours but as soon as I was able, I had the nurses help me into a wheelchair in order to go to the NICU to see my little girl. She was just as beautiful as I had remembered in my drugged state. She was laying in her warm bassinette with just a diaper. She had wires and tubes all over her and she looked so tiny. I wanted to hold her but I barely had the strength to even sit up beside her bassinette. I held her hand and talked to her. Her hair was so silky and I loved touching it.
At some point that morning, we received a phone call from Martha. She was in tears because she had missed our message the night before and
was so sad that she was not already at the hospital. She wanted us to know that she would be there as soon as possible. Also that morning, Dr. Donna brought the results of the Echocardiogram (EKG). She explained to us that they did not get clear enough pictures and that they would be performing another one before noon.I gathered enough strength to visit Zoe in the NICU every couple of hours. Our family and
Martha would take turns going in with us to see Zoe. Typically it is only supposed to be two visitors at a time but the staff made an exception for us. Sometime mid-afternoon, Dr. Donna sat back down with me and David in my room and explained to us the results of the second EKG. A specialist at Riley had already interpreted the results and had explained that Zoe’s heart was worse than we realized and that he would not be able to perform surgery on her. Apparently, the pulmonary valve was extremely blocked and the only reason Zoe’s heart was getting any oxygen was due to a secondary valve that remains open for the first few days of any baby’s life. It generally closes within the first week or so and at that point, Zoe would be struggling to get any 
oxygen to her heart. Dr. Donna told us what the specialist had relayed to her but when she realizes we had questions she hooked up a phone in order for us to have a conference call with the doctor. He explained the results just as she did and explained that basically, there are too many problems with the wiring of Zoe’s heart and that there was nothing he could do. We were told that Zoe could last days, she could last weeks, or she could last hours. I was devastated and couldn’t remain strong. I knew that she was going to die and the pain was so heavy. I feel it now in my throat and chest even as I rewrite the story. David and I were immediately faced with a parent’s 
toughest decision…how long to we allow her heart to be artificially oxygenated…when do we decide that we will take her off of the ventilator to see what she is capable of doing on her own. I knew that I couldn’t do it then. I didn’t think I could ever do it. Yet I knew that a decision had to be made. David and I talked throughout the day and decided that we would look at removing Zoe’s ventilator on Friday, Sept 16 at 9:00am. I wanted to give my family and David and I an opportunity to hold Zoe and spend time with her on Thursday.
At 10:44pm on Wednesday, Martha and David went down with me to wish Zoe a Happy 1 day Birthday. We sang to her and I put lotion on her tiny body and combed her beautiful hair. I had also brought a casting set to take footprints of Zoe. They didn’t turn out so well and the nurses who were helping us were very upset by that…so upset that the next morning, they had made their won casting that were better than I could have imagined. They are very special to me to this day and I am still amazed to notice that her foot was about the size of my big toe.
No comments:
Post a Comment