Today's ride was much less a standard roller coaster and much more a loop de loop. Lots of up-and-downs and spirals during this ride. Started off okay but we had some some blood pressure issues overnight that caused her pressers to be raised to the maximum levels again. Her cycles are so damn frustrating. She has pretty good days so they start lowering the meds because her pressures are too high, she sustains them for awhile and then crashes at about 3am. Every. Single. Day. That is why we hate walking in here in the morning. It is such a letdown.
When we got in this morning we were greeted with the news that they believed she had a leak in her right lung that might need to be fixed with a chest tube. However, with the state of her edema and her extremely fragile state, putting in a chest tube might be too dangerous. Our choice was to essentially to put in the tube despite the risk and give her a chance or let things be and be prepared to let her go. This is an extremely hard decision that I really didn't think I would ever face. After multiple xrays showing that it was getting worse, Dan and I decided to have the chest tube put in despite the immediate risk. We spent the afternoon taking turns singing and talking to her while stroking her head and holding her hand.
When the doctor (finally) arrived, we kissed her and told her how much we loved her and left the room to wait. I can't even describe how horrible this feeling is, even though we have had to do it multiple times already. I never, ever thought I would be faced with so many life-or-death decisions. It puts so many trivial things in perspective. Like I said yesterday, we are truly changed forever. The chest tube took 15 minutes to put in and she did beautifully. Her stats immediately shot through the roof - her heart rate is better than I have ever seen it (136 right now), her sats are in the NORMAL range (!) and her blood pressure is on the high side. So high that even though they want to ween her very slowly, they had to come down on the pressers by half! She has also had a negative urine output for the first time today. She is so amazing. We are so proud to be her parents. I can't believe that a 36 day old has taught me so much about strength and perseverance. Her will and fight to live completely baffle me. She wants to come home to us and keeps fighting to do so. I only can hope and pray that it will be sometime soon.