Wednesday, October 2, 2013

Photo Series: Life at SLCH

{I think we set that darn pulse-ox foot monitor off ALL the time!}

After several days under the UV lights, Henry (he finally had a name!) was able to get his billirubin under control.  The numbers were still steady, but the number of new blood cells he was having to make in order to compensate for those my blood was attacking in his body was declining.  Good news! We were scheduled to go home on Friday, Sept. 27.  I thought the timing couldn't be any better.  My parents were scheduled to fly home the following day (Saturday), so we would have one day home together.  
That Friday, I spent the morning feeding Henry and getting him ready to go.  I had to watch a series of videos before we could leave, so I watched those and just hung around.  We were waiting until about 1:00 to do his car seat test (2 hours long!) and then we could go home.  Around 11:30 I ordered lunch.  I was in and out of the NICU waiting for my lunch to show up.  It was taking forever!  At one point I went out into the lobby and lunch room to wait.  And wait.  And wait.  When my lunch didn't show up, I went back in to wait by Henry's bedside.  When I returned to the NICU, I came around the corner and saw all of his doctors (probably 4 of them) hovered over Henry.  Dr. Colvin came to me with a concerned look on her face and let me know what was going on.  Henry's alarms had gone off, and when his nurse came to see what was happening, she saw that Henry wasn't breathing.  With a little jostling, he began breathing again on his own.  The nurse notified the doctors of what had happened, and just minutes later he did it again.  Fortunately, many of the doctors were right there and watched it all happen.  Within several seconds, Henry began breathing again on his own.  
As a mom, I think we all feel like our job is to protect and care for our children.  Not only was I concerned and upset by the news of Henry's breathing episodes, but I was so upset by the fact that I wasn't there to protect him.  I wasn't there to care for him when he needed me to be there.  Instead I was out waiting for my lunch!  It's almost embarrassing.  It crushed me.  I felt so selfish and incredibly helpless.  I now knew what it felt like to be completely powerless over this situation.  I know I couldn't have done anything to prevent this from happening.  But I still felt sick about the fact that I wasn't there when it happened, and Henry's recovery and eventual discharge from the hospital wasn't up to me.  
Because of these two apnea episodes, Henry would not be going home that Friday.  Dave and I went home devastated that night.  Winston and Lizzie were so looking forward to having their baby home.  I was, too, as was Dave.  We were crushed. Lots of tears were shed.  
Through all of this, it was easy for me to compare our situation with others' and feel ashamed or ungrateful.  Our baby was strong.  He was robust.  He was growing.  He was eating.  He wasn't sick.  Why should we complain?  Sometimes I wondered why we were even there!  But those feelings of helplessness, the aching heart, the wanting to be home as a family, the search for answers from doctors/nurses/anyone -- those were all real, raw feelings.  I knew that our situation may not have been as severe, but it was still serious.  Our baby was just as important and our feelings were, too.  To this day, those feelings still surface when I see or hear of another baby and family at the NICU.  Those feelings are still fresh, and I appreciate and have greater empathy for those families in that situation.   
{Finally off the lights and happy as a clam all swaddled up.}
{Wearing stickers from Lizzie}
{On oxygen during the sleep study to determine why Henry was having those pesky apnea episodes.}

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