Saturday, July 12th – A new day

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We find out from the nurses this am that Riley’s last two bilirubin checks were down to 7.8 and then 7.6.  Ok…now we’re at least heading in the right direction.  God I missed seeing her face.  It’s been over 2 days.  I haven’t been able to touch her since the day she was born.  So instead I would watch her often (or at least try to, having to standing awkward positions and having to navigate around all the equipment surrounding her incubator to get a good look at her.  The highlights were watching each movement, from the rise and fall of her chest, to watching her stretch her legs out, kicking them in the air, putting her hands up by her face, and wrapping her little hand around the endotracheal tube.  Ian and I would yell at her (quietly) when she did this, for fear of her self-exubating.  That’s all we needed.  And per the nurse, it wouldn’t be the first time.

During morning rounds (which is when Ian and I sit in with the doctors, nurses, and other disciplines, such as the respiratory therapist, while they discuss Riley’s case), we were hoping they were going to try and wean her off the oscillator completely and onto a conventional ventilator machine, and maybe even begin to feed her.  However, they didn’t mention any plan to wean her completely from oscillator and did not want to feed her until after Monday.  Monday she would be getting an echocardiogram to screen her heart given that she is premature and given her current medical status as a precautionary measure.  They were specifically looking to rule-out Patent Ductus Arteriosus (PDA), which is something I read about earlier during my research about pulmonary hemorrhages, and I found out that it could be a potential cause/associated with a pulmonary hemorrhage.    They didn’t want to start feeding her until after that, because if they do find something, she would have to be NPO (no food/liquids by mouth) to receive the necessary medication.

Overall, today was a really good day.  It seems we’re on sort of an every other day trend right now.  One day is good (and often really good), and one day is bad (often really bad).  She was continuing to be weaned from the oscillator, and was doing very well from a respiratory standpoint.

The night ended with what has been one of the most amazing moments of my life (my wedding day was a close second, but sorry, Ian, this one took the cake).  Ian and I came back from dinner to check in on Riley and say good night.  We no longer were staying in the NICU room, and had instead moved to a hotel that was a block away, as we still were feeling uncomfortable to go home at night.  I am a little ahead of Ian, as he stopped to go to the bathroom, and I see the oscillator machine sitting outside of Riley’s room.  My initial reaction is a slight sense of panic.  However, this panic immediately turned to absolute joy as I see the blue conventional ventilator next to Riley’s incubator, and the nurse is yelling at me “hurry, hurry, wash your hands, wash your hands!!   My jaw literally drops and I think I literally jumped up and clapped my hands.  I look up at her monitor, vitals are stable.  I look at her vent settings and they are low. I look at her incubator, and the obnoxious blue lights are temporarily off and I see Riley’s face for the first time in days.  Ian is not far behind and hears yelling and panics (This is what we do…a little post traumatic stress from the previous evening).  The nurse informs Ian of the good news and he says “get the hell out of here” and tears well up in his eyes.  I put my finger in the palm of her tiny hand, she grips on and holds it tight, and I start crying immediately.  Finally…tears of joy.  Ian and I take turns touching her hand, and we even get to kiss her hand good night.   What an AMAZING feeling!  And another bonus, both of her eyes had started to open.  We got to look into our child’s eyes for the first time.  There truly is nothing more remarkable and more rewarding than that.  She’s beautiful.

Tonight was the first night we were spending the night at the hotel, and Ian and I had plans of taking shifts, sleeping at the NICU and at the hotel, as we had still felt afraid to leave her.  However, after this turn of events, we both felt comfortable going to the hotel, with us BOTH getting a decent night of sleep, knowing that the NICU was only a phone call and 2 blocks away.  I don’t know how we’re going to sleep tonight, given that we’re both on a high.  A positive adrenaline rush.

There’s a part of me that goes back and forth between being afraid to get too excited, as this is sort of her MO (extreme highs before extreme lows), and feeling like I have every damn right to celebrate these moments and feel this complete and utter joy, as they have been rare thus far.  So we did the latter.  Riley is one day stronger…

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