The song with the lyrics, "one step forward and three steps back" was stuck in a repeating loop in my head last night as I tried to process the events of the day. In reality I am sure that things did not get as bad as I thought they did, but when your emotions are in such a delicate balance any perceived regression feels earth shattering.
Saturday started out amazing. Ellie was laughing and giggling for the first time in almost two weeks. She was eating like a rockstar. We were taking turns holding her. She and I were even able to pick up where we left off with "The Great Gatsby", take away all the beeping from the surrounding infant stations and it almost felt like we were home. Mel too was in her glory, holding her little girl smothering her with kisses. When the team of doctors came by there was even talk of moving her out of the NICU into a transition cardiac ward. It was truly unbelievable how well everything seemed to be going. For the first time I think we both felt that there might be a light at the end of this dark tunnel.
We headed back to our temporary home and literally passed out. It was the ringing of our phone that eventually woke us. Groggily Mel answered as I laid there trying to piece together what was going on and where I was. It was the tone in Mel's voice that cut through my fog and led me back to reality.
It was our wonderful nurse on the phone calling to update us. Ellie had had a rough afternoon. She was still agitated, and had not settled for a nap. More importantly though, she had been sick and had vomited a few times. It was the contents of the vomit that was the most alarming to us. Ellie had vomited what look to be old blood. The team had done an x-ray to check her belly for any irregularities and found none and her belly felt soft to the doctors touch. Nonetheless all feeding was suspended until they could be sure that it was not her new drug regiment that had caused the bleeding. Although the feeling was that the blood had been there for some time and it was the reintroduction of milk that had stirred it up.
A little panicked we hurried back to the hospital. Of course she looked perfectly fine, alternating between a playful happy mood and her overtired cry. We took turns trying to comfort her in order to help her fall asleep, with minimal success. We both knew exactly what we needed to do to get her to sleep but were prevented from doing any of our learned tricks by her spider web of remaining IVs.
In a pathetic attempt to explore all avenues for getting her some much needed sleep, I flagged down a doctor I recognized and insisted that he take a look at her. He thankfully obliged me. Of course as soon as he began his assessments of her, Ellie was content to just give him googly eyes and smile at him. He prescribed some Tylenol for her discomfort and suggested that we might be part of what was stimulating her. Again it was suggested that we should go and get some rest. He assured us that all her vital signs indicated she was doing great and that her inability to fall asleep was most likely related to her being weened off of the sedative she has been on since we arrived here.
We reluctantly did as we were told and headed home. We were both emotionally spent and talked little over the next hour as we tried to calm down and go to sleep ourselves. Fitfully I laid in bed praying that today was just a blip in the road to Ellie's recovery and tomorrow would begin a new streak of positive steps forward. I would be grateful if we could write our own version of the silly song.
Three steps forward, take a rest, then three more steps forward.