I am often asked to describe what happened that day. In the beginning. So here it is - every detail we can remember.
August 7th -
I go to the bathroom. It takes me about 10 minutes just to take a pee break. When I walk gingerly back to the bed, I mention that I think we should stay the second night. I do not feel quite ready to leave.
I went back to sleep. I woke up to the sound of her sweet cry. I called Ian's name to get her so he could bring her to me. I was still too sore to get up and down from the bed. I pushed the buttons to make the bed more upright. I set the pillows up on each side of me to make it more comfortable for her precious body. As soon as he picked her up, her whining stopped. She looked around, bright eyed.
I put her to my breast and she began screaming. This was the story of the rest of the day. Up to breast, crying. Eating, crying.
Our pediatrician told us that she's a big baby - maybe she needs a supplement until I make enough. Is she cluster feeding and not getting enough? Is she tired?
She falls back asleep. She must have been tired. This is the last picture I have of her by herself on that day:
Family arrives. One by one, people hold her. By 2pm, she is back awake. Crying. I try feeding her. In between feedings, she is passed from person to person. Then handed back to me to soothe her.
"Try feeding her again. She must be hungry."
I try again. Ian holds up the blanket so I can feed her with family around. She fusses. Is she not hungry? Maybe I need a lactation consultant to come and work with me - maybe she isn't latching properly.
My brother holds her afterwards. He's talking so sweetly to her. We're taking pictures. "She just spit up I think." I thought in my head that that did not seem right. She was over 24 hours old, had eaten plenty of times, and had never spit up. And, it had been over an hour since she last ate.
Back to fussiness. I hold her, rock her, feed her again. More spit up. I mention it to the nurse. "It is just spit up. Babies have reflux."
Most family left by 7pm. She hadn't slept since she woke up at 2pm. "That's odd for a newborn" I thought. Maybe she was overstimulated. She wasn't fussy anymore.
We held her off and on. I fed her periodically. Only for her to spit up an hour or two after each feeding. At 9pm, I mentioned it to the nurse that she hadn't slept since 2pm. "She looks content." Those words still ring in my ears.
I fed her at 9:30pm. Ian and I decided to sleep as long as she was content. It makes me cringe knowing that I went to sleep. I closed my eyes. I woke up shaking uncontrollably. I was nauseous. I was sweaty, but felt freezing. And the shaking...I couldn't make it stop. I went to the bathroom and came back to the bed. I woke Ian up and told him I didn't feel well. Then within a few minutes, at 10:30pm, I heard her making a funny sound. I reached up and flipped her to the side where she spit up. Except, I knew it was not just spit up. "Maybe we both have an infection. I don't feel right. Something is wrong. And I think something is wrong with her." I called the nurse in. I expressed that I was nervous - that it seemed like she had thrown up, and that I, too, didn't feel well. She took her temperature - it was lower than normal. We wrapped her with an extra blanket. "Get some sleep - she is content. At 12am when I take her for her discharge tests, I will check her out. And your shaking is all from the hormones."
At 12:30am, our nurse came in and took her. I stayed awake. I was worried. And I couldn't stop shaking. Ian slept. My mind wandered and I tried desperately to close my eyes. At 1:30am, our nurse, Lisa (I'll never forget her name), came and told me that her temperature was still low after being under the warmer for a half hour. "She looked kind of shaky. I went ahead and tested her glucose and it was very high. I've already called your pediatrician and they want to get a NICU consult. She has had more emesis as well."
I went into panic mode. I freaked out. I knew in my gut that something was wrong. I never in my wildest dreams knew just how wrong that something was.
Ian said to sleep until we knew more. He did sleep. I couldn't. At 2:30am, the NICU nurse came in. "I don't feel comfortable leaving her here. We can monitor her more closely in the NICU. She's doing some funny things that don't seem right to me." Funny things like what? "I think she's having seizure like activity. The smacking of the lips is not normal." When will we know more? "Before my shift is over at 7am, I will come back and update you."
I burst into tears. Ian held me. We both cried. We didn't know what was wrong - but we knew the fact that it had been 12 hours since she had slept meant something was wrong.
At 4:30am, the door to our room opened. A man came in with two women with him. He looked frazzled, anxious. "We need to transfer your daughter right away. Your daughter is sick. We think she has a metabolic disorder. Her ammonia levels are in the 400s and it is extremely dangerous. I wish I had more time to spend with you - but I need to focus on getting her where she needs to go. University of Maryland is expecting her and is starting to make the medicine for her." Is she going to be okay? "I don't know."
Those three words. I don't know. They haunt me.
I turned to Lisa, when can I be out of here? "Right away. Let's get you ready." They all left the room. Ian came and held me as we both cried. After we had a breakdown, we got down to business. We packed up our stuff. I acted almost instinctively as I grabbed my rosary in the process, and I started praying out loud. I made every bargain with God I could possibly think of. Just please, save our baby. Desperation. I had never experienced it before that moment. I may have thought I'd been desperate before - but really, that was the first time I'd experienced it. When you have nothing left, and everything is out of your hands, you offer anything and everything.
I had given birth 48 hours ago. The pain I had from labor was nothing. All I cared about was her making it.
Once we were packed and the car loaded up, we arrived at the NICU to hold her one more time. She already had wires coming from her. Two IVs, heart monitors, a pulse oximeter. Everyone seemed to whisper as we walked past. If I knew then what I know now, I would've known just how serious she was by the whispers and stares. "Those are the parents of THAT baby" is what they were thinking.
They put her in my arms. We whispered to her to live, to please live. We whispered how much she was loved. I asked if I could ride with her in the ambulance. No. That should have been another clue as to how serious she was.
When the transport team was ready, they whisked her up out of my arms, but not before Ian and I each gave her one last kiss.
Then Ian ran to the car to pull it up. A NICU nurse got a wheelchair to wheel me down. I sobbed the entire way. I don't even know what her name was. But as I sat in a wheelchair in front of the hospital waiting for Ian to pull the car up, I sobbed my eyes out. "This isn't fair. This shouldn't be happening." She agreed with me. She rubbed my shoulder and said to allow myself to mourn the loss of what should be. I stood up and she hugged me.
We raced to the next hospital. As we were taking a back route, we looked up over the ramp to the highway and saw the ambulance with lights on. We cried even harder. The sun poured into our car on the ride there. We were silent and crying. We held hands. I called every person I could think of to start praying. I left voicemails, sobbing, asking friends to start praying. It was Sunday. Please go to church and pray.
We got there at the same time as the ambulance. I walked in as quickly as my body would allow. Our families met us there. We got to the floor before she did. I saw the team transporting her carrier down the hallway. One of the transporters said "you made good time" when he saw us there. Funny how I can remember such specific things from that day.
We waited in the family waiting room. We all cried - not wanting to think about what could happen that day.
Then, we started learning about what was happening. Three words were uttered that have changed our lives forever: Urea Cycle Disorder. In the middle of the discussion with these new doctors, I turn around to see her pediatrician. He had heard she was transferred and came immediately. He walked up to us. I burst into tears. He put both hands on my shoulders and said "I am SO glad you didn't go home a day early. You did good mom." And gave me a big hug.
We stayed at the hospital until about 8pm. I was then told I had to go home - my family and Ian practically dragged me out of there. I hadn't slept in over 48 hours. I was running on empty.
I got home. Without our baby. Walking through the door with empty hands was devastating. I got my breast pump out - I didn't even know how to use it yet. I sat in her room and pumped.
We finally went to sleep. It wasn't long before the phone was ringing. And it continued ringing every 30 minutes after that.
"Remember how we said if the medicine didn't work, that she'd need to have dialysis? Well that needs to happen."
"Our dialysis team was called in and they are not comfortable performing dialysis on her. We need to transfer her."
"Her ammonia level is now 535."
"We are transferring her to Johns Hopkins."
"Johns Hopkins is taking too long to get back to us. We need to transfer her NOW. Children's, in DC, is ready for her."
"We're calling for consent for airlift to Children's."
3:30am and they are telling me the risks of flying the helicopter. Do we have any other option? No. Do it. "We need to get off the phone now and get in the air before the fog comes in."
3:45am Children's doctors begin calling me. Getting consent before she arrives for surgery to put a dialysis catheter in her neck, a picc line in her groin.
4:00am Children's doctors are calling about whether I want her put into a hypothermia state. What? "It's a trial but could limit the brain damage she suffers." I immediately call our on-call pediatrician who we've never met. I send her an email with the paperwork for the clinical trial. She pages our actual pediatrician. At 4:30am I am talking to our pediatrician, reading through clinical trial information and evidence to support doing it. [How many pediatricians would do this? Hardly any. This is why I recommend our pediatrician to every person in the Baltimore area.] He finally said, "It makes sense to do this. All I can say is that if this were my child, I would say to do it." And so we did. We signed the consent forms and scanned them back to Children's. As I was discussing it on the phone with Children's, the doctor said "Oh I have to go, she has just arrived." I could hear a lot of commotion in the background. "She's here." We later found out that she was Children's first hyperammonemic (high ammonia) patient for hypothermia to be used.
She had made it there, alive.
Ian and I slept for a couple hours, as best we could, and then woke up and packed up everything. We sat quietly on our way to DC.
We parked. We walked in and checked in at the front desk. We were told where to go. We took the elevators to the 6th floor. We checked in at the NICU front desk. They told us what room to go to.
We walked by dozens of doors, looking in at the babies. Most of the rooms were dark and the babes were sleeping. We'd see a nurse here and there in a room. All of them seemed to be private rooms - maybe just for babies that were contagious? We finally got to her room. It was full of machines, doctors, nurses. It didn't look like any of the other rooms. It was busy. Lights on. People barely noticed that we had entered the room. The nurses (we would later figure out that there were 4 nurses taking care of her for the first 24 hours) did not really explain much. They waited for her doctors to talk to us.
Doctors came in one by one introducing themselves. We felt overwhelmed by all of it. One of the head doctors leaned over her crib as we watched her, ventilated, in a coma, and said "Congratulations. You have a beautiful baby girl. But I have to tell you, your daughter is sick." I know. "No, she is really, really sick."
During rounds, when all of the doctors and nurses and specialists come together to discuss the past 24 hours, and the next 24 hours, Ian and I were inundated. We looked around - we couldn't all fit in her ginormous room. There were too many people involved. Sixteen doctors and nurses. Geneticists, neurologists, nephrologists, pharmacists, pediatricians, social worker, case manager.
We learned that by the time she had arrived at Children's, her ammonia had gone up to 585. Normal range is below 70. We were told we were lucky that it hadn't gone into the thousands.
She was on hemodialysis to clean her blood of the ammonia. Her body was cooled to a temperature of 94 degrees to reduce brain swelling and try to prevent serious brain damage. Her ammonia came down to a normal level within 24 hours.
What was next? Her NICU doctor said, we wait and see if she wakes up.
The next week was a roller coaster. But 6 days after arriving to Children's in a helicopter, she graced us with opening her eyes. And 31 days after she arrived at Children's, we brought her home for the first time. She was 34 days old.
There are other details to this story and about her stay in the NICU that I could go on about, but I needed to get out the process of how she ended up there and what it was like when our world came crashing down. To this day, I firmly believe that me waking up shaking uncontrollably was some deep motherly instinct, that my body was telling me something was wrong. I have kept in touch with the head of the NICU who acted so quickly and focused on getting Luca where she needed to be. That nurse who we had - she did the absolute right thing in checking her out. She was magnificent in getting us out of there so we could make it to Maryland at the same time as Luca. And her team at Children's - I cannot say enough about them. They will always hold a special place in my heart.