Lost on the Floor

Read Part 1 here...

After 3 days and a helicopter ride the inevitable had finally happened. At 4:45 AM, they rushed my wife back to the OR to perform an emergent C-section.

At 5:05AM, Mia Rose was born.

I had accompanied my wife as far back to the OR as I could. I was left sitting in a lonely plastic chair at the entrance to the operating suites. Waiting. Alone. Every time I saw or heard movement behind the doors I sat up, hoping to catch a glimpse, or least a notice, something to let me know what was happening. I was worried about both of them. My wife has Factor V Leiden, which causes her body to not break down clots as fast as it should so I was considerably worried about bleeding especially since she had been on Lovenox the whole time she had been in-patient. But moreso, I was worried about Mia. She was early. Very early. As a nurse I knew the statistics, the possible outcomes, the frankly grim reality of our situation. But as a father I had so much hope. I believed in the strength of her spirit and that even though she was small and early with the help of the NICU she would pull through.

For an hour and a half I sat and waited. At this point I didn't even know if either were alive. Then she came back. They were wheeling my wife out of the OR area. She was still out cold for anesthesia. I pulled the attending aside and asked the question. "Is my daughter alive?" She replied, "She is, she's in the NICU, they're trying to stabilize her right now." Joy and despair raged through me. I had hope, but the word "stabilized" re-awakened the cold, gnawing pit of fear in my gut. We got my wife settled into recovery, hooked up to an A-Line and monitor, nurse on a 1:1 ratio. I asked the charge nurse if I could go to the NICU to check on my daughter. Phone calls were made and I was taken back. There, again, I sat, alone in the family room of the NICU, making phone calls to let family know what was happening. Alone and dozing, I sat and waited. Then waited some more. Finally I knew I had to check on my wife, so back to recovery I went. I knew Mia was alive, but didn't know how bad things were.

When I got back, the only thing my wife could ask was, "Is she alive?" In the dim haze of post-anesthesia, that's all she could say, over and over again. I sat there, stroking her hair and telling her that she was. Then a person in hospital scrubs came in. She introduced herself as one of the NNP's working in the NICU. She had consent forms for a PICC and blood with her and she gave us good news: Mia was alive. She had been stabilized, far from out of the woods, but stable for the moment. I asked, "Can I go see her?" And we were on the way.

I met my daughter for the first time 5 minutes later. There she lay in an incubator, lines from her umbilicus, and ET down her throat, leads all over, a tiny little diaper on. She was the most beautiful sight I had ever seen. All those emotions that had been pent up inside of me, the fear, the sadness, the pain from our son, the worry and the joy came streaming out. It was an incredible moment, one to treasure forever. The nurse and I talked, she gave me an update on things and a perspective on the next couple of days. She told me it was "going to be like a roller-coaster. There will be ups and down, good days and bad." At least so far it was a good day. The nurse gave me a picture they had taken so I could show my wife:

A little while later when my wife was feeling able she went back to meet her daughter. Again, only this time it was the neonatologist who gave us the run down, what to expect, what Mia's condition was, the gamut. Then we got to spend time together, as a family. Separated by the glass of the incubator, but a family.

They continued to stabilize my wife. Her BP's were all over the place, in constant pain from the section and generally a mess. That evening they moved her out of the L&D section and into post-partum. From the solitude of a single private room, they moved her to the madness of a 4 bed ward. And then the problems got worse. Each nurse would ask, "Where's your baby?" if they asked at all, and she would have to tell them our Mia was in the NICU. They rarely, if ever checked on her, left her to her own devices. Until they kicked me out for visiting hours, I was her nurse, afterwards though, she was forced to fend for herself in all the tasks of daily life, trying to walk to the bathroom after being on bedrest for 3 days and then having a c-section. Weak was too simple of a word to describe how she felt. Not to mention that her BP was still up. Had I had a patient with pressures like hers, I would have been on the phone to the doc in a hot second, but nothing. She was neglected and alone. She wanted nothing more than to see her child. The life she had grown inside of her for the last 6 months, but she couldn't.

The next morning began the ritual that would sustain us for the next 6 days. I would arrive at the hospital as soon as visiting hours started. We would go to see Mia. Spend time with her, think and plan about our future. Things were now totally changed from what they were 5 days previous. Now, instead of moving to Oregon, we were going to have to move to Phoenix. I needed a job. We needed a place to stay. Together we planned that. Every morning we would go see Mia. Then in the afternoon. Then at night. Every 2 hours she would pump and I would run it to the NICU, calling it, "meals on wheels." All this time they were still trying to get my wife feeling better. Finally after sending her back to L&D, they got an IM consult, but all they wanted to do was put her on an ACE inhibitor, which for breast feeding moms is totally contraindicated. So we had to fight for them to find something else. Which they did, but only at our urging. One thing the neonatologist had told us was the breast milk was the best nutrition for Mia and that while we couldn't do much, we could deliver that. It was important.

But it was night that we loved the most. We'd head to the NICU as visiting hours in post-partum ended, to have more time together. Lucky for us the NICU was open 24 hours a day, with the exception of report times. We spent time there, talking, letting our baby sleep. There in the glow of the bili lights we planned and celebrated.

We celebrated the good things. The day we heard her PDA had closed. The day she got a feeding tube and had her first meal of mother's milk. The day her ultrasound came back negative for intraventricular hemorrhage. How she responded to our voices. The day I changed her diaper. Even if she had been fussy before we got there, something about our presence calmed her down. Just us sitting there talking, like we had used to do when she was in the womb mellowed her out.

The last day she was alive started like any other. We got my wife moved to a private room, her BP was getting better. They were talking about discharge in the morning. Mia though, was having issues. She spit up milk, was fighting the vent, just not doing so hot. Come to find out later, her ET tube had gotten displaced and was resting on her carina, so she wasn't getting the best ventilation. But she was doing OK. We followed our ritual. That evening she was doing better, slightly, but at least resting. I went home the Ronald McDonald house thinking that it had been one of those down days we had been warned of. A bump in the road. That night my mother-in-law stayed at the house with me before she left town. I went to bed, tired and a little worried.

The phone rang at 6:45 the next morning. My wife was crying, freaked out, "I think some thing's wrong with Mia. There's hospital number on my phone. Can you call?" I called, the MD told me I needed to get over to the hospital, now. I called my wife back, told her I was on my way. Scared out of my wits, shaking I ran to where my mom-in-law was and told her I had to go to the hospital. Honestly, I don't remember the drive at all. I know I made record time and probably broke a couple of laws along the way, but this was an emergency. I ran up the stairs to the NICU, flew in, past the clerk who tried to tell me I couldn't go in. I didn't care. My baby was in trouble. I rounded the corner and saw her small little room in the back of the NICU jammed with people. My heart, already in my throat dropped out of my body. There they were performing CPR on her little body. I knew in that heart wrenching moment that she was gone. All that was there in the room, in that incubator she had called home for the last 7 days was a shell. The spirit and soul that made her Mia Rose was gone. My wife was there too, inconsolable, crying, shaking, looking like a lost little girl. The MD gave us the update. She was gone. Septic. Everything they did, all the miracles on modern medicine they had thrown at her couldn't stop the process. I looked at the team through a curtain of tears and agreed that they could stop. It was over.

That morning we got to hold our daughter for the first time. We got to see her face without the ET tube, see the eyes, still closed that she had tried so hard to open to see us during the last 7 days, touch her face and hold her close for the first and last time. They took us to the family room where we sat with her and the rest of the family for hours, saying good bye, holding our little girl. It felt like life was over, that there was no point in even going on. They dressed her in a little white dress, with a little white hat, wrapped in a little white blanket, looking like the angel that she was. After we said our good byes I took my wife back to her room. As she went to shower I once again had to make arrangements for the final disposition of my child. The previous November I had to do that with our son and now our daughter. Then we left that hellish place of a hospital, never to look back. Later that night, after all was done, we held each other close in bed, crying into each other's chests, hoping and praying that the day been only been the surreal dream it seemed like it was, but knowing that she would still be gone when we woke up in the morning.

Next...Part 3, the Aftermath.
I wanted to get the whole thing done tonight, but couldn't, there's just too much emotion. But I should finish Part 3 after this work week.