Thursday March 15 2007
Luke and Will are 4 days old today... already such a scary life. They've had blood transfusions, been poked and prodded all over the place, and been transferred from a small hospital special care nursery to a large university neonatal intensive care unit.
The doctors told us today that their brain hemorrhages have worsened. Will's hemorrhage is serious - I think the most serious kind. Grade 4, which means that it has gone outside of his ventricles and into his actual brain. The risk for long term effects is very high. Luke's hemorrhage appears to be much smaller. The long term effects are less severe. It is all a wait and see game with both boys. It is killing me.
Luke is off of the ultraviolet treatment for jaundice. Will is still on it. Nate's drawn sunglasses onto his bilirubin eye shields. We're trying to find humor in everyday life right now, though it is very difficult.
Both boys are still on ventilators. I know that Luke is on room air now, and the doctors are talking about extubating him this evening. He had been off of the ventilator and off of CPAP prior to being transferred to UNC, but he degraded in the ambulance and has been intubated ever since. Will is doing well on his vent, though I am not sure what percent oxygen he is on. I know that his oxygen saturation level is good. Hopefully neither boy will have the lasting effects of this respiratory distress syndrome.
It appears as though there are no lasting effects from Will's heart murmur. They treated him with indomethacin to correct a heart duct that wouldn't close. Luke will probably need surgery to close his.
Because it is impossible to know what tomorrow holds, we're just trying to stay in today and not get too ahead of ourselves. It is really difficult, as your mind goes into mysterious places when the doctors try to explain all these scary diagnoses. So today we're at the hospital and nothing has changed. As things really seem to have gone from bad to worse over the past couple of days, this is a welcome change.
We had all of our parents here with us, and I think it has helped quite a bit. My dad is a constant at the boys' bedsides. His quiet presence is calming. My mom arrived in NC the night of the 11th. She told me that she didn't know what she could do to help the boys, so she was going to concentrate on making sure that I was ok. Peggy and Joe got here yesterday and have been doing their best to stay upbeat. I think it is hard for all of them, although we're thankful that everyone is here for us and spending a lot of time in the boys' room.
We all get excited whenever Luke moves around or opens his eyes. Will has been on phenobarbitol since he arrived here, so he has been very sedated. It is hard to see, because more than anything, we want to see him open his eyes and respond to sound like his brother. I don't quite know what the criteria for being taken off of the phenobarbitol is, but hopefully it can happen soon. I think we all need something to go right, just to give us some hope.
Last night, Nate and I had our first chance to talk since everything started on the night of March 10. God, I don't think that I could have imagined when we got to Rex that night that this is where we would be today. That abruption was so scary. And then to come to the hospital and find out I was having contractions. And then to have nothing get better after that horrible magnesium sulfate, and get wheeled into the O.R. just 5 hours after it all began. I wouldn't wish this on anyone. All I want is to still be pregnant with these boys. I tried so hard to do everything right... just to have it all end so suddenly. It feels unfinished. Taken away.
I've never been a very religious person, but I think something like this could change a person. I think the hospital chaplain is going to come and see us soon. Our greatest fear is that Will isn't going to pull through, and that we're going to have to make the decision about life support. No parent should have to make that choice, and here we are... just 4 days after his birth wondering if he is going to live.
It was good that Nate and I were able to talk last night. We truly need each other through this, and the separation between hospitals and all the family in town made it so we couldn't talk. He's holding back so much emotion. It is unfair to him. I wish I could be his strength just as he has been mine. I've been useless over the past couple of days - a mix of fear, sadness, post-partum hormones, and pain medication. He seems to be doing much better today, though I am fearful that it is a facade.
We're about to call it a day here. I am going to spend another couple of minutes with my new little loves, and then try to do the only thing I can do for these boys - keep pumping.
I found a journal recently that I kept 4 years ago when the boys were just born. One of the people at the hospital gave it to me and encouraged me to write. It has a baby foot on it. But it isn't a preemie baby foot. It isn't bright pink and doesn't have a multitude of white pin pricks on the heel.
I haven't opened this book since Tuesday April 3 2007, which is the last entry and still 6 weeks before our discharge from the NICU. It is strange and sad to read these words. I wish that I had written during their entire NICU stay, but I think that when things started looking up and the NICU end was near, I allowed myself to be happy and hopeful. I didn't need a pen to express feelings at that point because how I felt was obvious in the smile on my face.