I went into labor in the afternoon on the 13th of December. Since I hadn’t ever done this sort of thing before and wanting to finally be done with being pregnant, I made sure I kept moving to make sure labor didn’t slow down or stop on me. Sure enough, after making beds, walks, baths, and five dozen baked Christmas cookies, we were all convinced that I was indeed in labor. I will make this part of the story very brief. I was in labor with hard and heavy contractions every five minutes. I opted for an epidural at the 14th hour, which did nothing but take the pain away. I was given more drugs to dilate. Not making any progress they decided I should let the epidural wear off. Exhausted, I fell back into the excruciating pain of labor. With Andy and a midwife on either side, me pushing, one doctor pulling with all her might on the vacuum attached to Emma’s head and another pushing down with all her might on my stomach, Emma was finally born on December 14th, 22 hours later. Who ever said that giving birth is an incredible experience can kiss my ass. (No hard feelings to those who actually enjoyed this part of the ride.) I will be scheduling a cesarean the next time around.
I will say that holding your baby for the first time does make you forget all the preceding trauma. She was beautiful. She was crying. Her cries fell from sounding very afraid to increasingly communicative bleats. I was amazed by her in every way possible. I wondered what it must be like, since none of us will ever remember, to hear our own voices for the very first time. To discover you even possess one. Was she just as amazed as I was? I have little recollection of placentas, stitches or any other possible pain, other than I was still laying on a bed in a very compromising position. Emma and I had a conversation about how the whole experience was hard on both of us. (She told me it sucked, but that might just be the mommy interpreter in me.) She told me she was cold. I told her I was hotter than all hell. Andy and I counted fingers and toes. 10 of each, perfectly placed. She had very long hands and fingers, just like Andy’s father and grandmother. Long feet, and short stubby toes like mine. It’s amazing how genes can get all jumbled around. She had very fine, soft hair. She was 52 cm long and 3350 grams. She’s immediately a daddy’s girl; perfectly content in her dad’s arms. She’s more vocal with me after our ongoing 9 month conversation. We smiled and crooned over her, the proud parents we are.
Emma and I were up all night together. She was fussy and I kept her next to me at all times. We cuddled and dozed in bed as much as possible, we nursed, and she was soothed when I lightly stroked her face. Early the next morning she finally seemed to settle and relax, and we were able to doze for a couple of hours. At 9:30 we met Andy for breakfast. Emma woke up immediately upon smelling the coffee and sniffed around, trying to focus on anything outside of her little rolling bed that might be the source of the smell. Andy and I laughed and ate as we watched Emma fall in and out of sleep, each new noise waking up a curious little girl. We relaxed in the room together, perfectly happy to be a family. Andy and I decided that we should take Emma in for a bath, and so around 1pm we decided it would be OK to wake her up. We wheeled her down the hall, she stirred and looked around briefly from the movement and fell back to sleep. We walked down the halls, glancing at our beautiful pink baby, and rang the bell to be let into the hospital nursery. Within a matter of seconds, as we waited for the nursery door to open, Emma had turned blue. And that’s when the whole nightmare began.
The nurse was grabbing Emma out of her bed and frantically trying to resuscitate her. Andy and I stood back in horror and watched, trying not to crowd too close or get in the way. The doctor came sprinting down the hall to help. They were helping her breathe with a bag. They were moving her out of the room, the anesthesiologist came sprinting into the room. A tube was inserted and she was put on a ventilator. She was completely unresponsive. The specialist team from the children’s hospital was called in, and in tears Andy and I watched as Emma was placed in a special transportation bed and rushed away in an ambulance.

I insisted on being discharged immediately. (They keep women in the hospital for 2 or 3 days after giving birth here in Germany.) A quick check of the stitches and we were on our way to the next hospital 30 minutes away.

It seemed like forever waiting in a room for the main doctor to come tell us what had happened and if everything was going to be OK. Andy and I were completely stunned, numb, and I was in a river of continuous tears. Feeling completely helpless only compounded the fact that our daughter suddenly couldn’t breath on her own and was being admitted into an ICU ward. After what seemed like an eternity the doctor came and told us these facts: that Emma was being treated for a strep infection, among others, just to be safe; that even though there was no cause for concern at the time of birth of me giving Emma a Strep B infection there was a 1 in 1000 chance of a baby getting Strep B from anything at all, it’s that prevalent; that her head was swelling as a result of her having stopped breathing; that she was getting drugs to help her urinate to pass fluid and help the swelling go down; continued swelling means less blood supply to the brain, which means irreversible brain damage. Regardless of the grim situation the doctor remained positive, telling us that little is known about how a babies brain recovers and that anything at this stage was still possible. We had to wait and see.

We went in and spent as much time with Emma as possible. We met nurses and doctors in duty. We learned the hospital rules and were told we could call whenever we wanted, and slip in to spend time with her in the night if we needed. We were given lockers for our things and hospital gowns to wear and were instructed to scrub up each time prior to entering. Eventually a shift change came and we needed to leave for a while. Exhausted we decided to head home for some sleep. We double checked with the shift doctor who was prepping Emma for a blood transfusion, and I lost it. I broke down sobbing hysterically and Andy had to lead me out and take me home. Seriously, a blood transfusion means… It only means…

The only sleep I got that night happened only because I was completely fried. I woke up around 1:30 am. Andy called the hospital for an update. Nothing had changed. I begged Andy to go back to the hospital and off we went. From this point forward our lives became a hectic jumble of sleepless nights, midnight dashes to the hospital, calls to doctors, tears, and robotic meals to sustain ourselves, regardless of how tasteless everything seemed to be.

Sunday, December 16
Still nothing changed. Emma moves her fingers on her right hand occasionally in response to being touched. Her head has continued to swell. Ultrasound scans of her head detect little to no blood flow to her brain, but they can’t be sure. She still hasn’t peed. She still can’t breath on her own. Both my mom and dad have made plans to fly into Germany and will be arriving on Monday. Andy and I spend as much time as humanly possible awake and at the hospital with Emma. We are still trying to make sense of it all at this point in time. The hospital staff remains reassuring and positive. Emma has started to pee. One small triumph. Her blood pressure remains very good. Another small triumph.

Monday, December 17
I wake up around 1:30 again. Something is wrong, I just know it. Regardless, I let Andy sleep a while longer. Around 2:30am we both get up and get ready to go back to the hospital. The phone call to the doctor on duty tells us nothing major has changed. Another ultrasound of her head shows no meaningful blood flow to her brain. Something has happened and she has taken a turn for the worse. We stay with Emma until we have to drive to the Dusseldorf airport to pick up my mom. I go with Andy to get out of the hospital for a brief while. Andy calls the doctor on duty from the airport only to get bad news. Emma’s hemoglobin has dropped to 5, dangerously low. Her head is still swelling. They are fairly sure Emma has had no meaningful blood flow to her brain. I spend the one and a half hour drive back to the hospital in tears. Upon returning to the hospital Emma is completely septic, and therefor yellow. It looks like there is no one “in there” any longer. The hospital staff are all very low and every ounce of what was once positive has been sucked out of the room. The nurses are even breaking into tears. My dad calls on his way from the airport, our brother in law is trying to get to the hospital as quickly as possible without getting killed. He asks how she is doing and I tell him that she is dying. It seems that we are in a race against time. The main doctor comes around and begins to ask us what to do in the event of a cardiac arrest. He starts to push us fairly hard for a Do Not Resuscitate order. He mentions that as this continues, Germany has a 72 hour protocol to be legally sure of brain death in an infant, however, at this stage there would be no question in an adult. There are a series of annoying conversations, cheap shots at compliance, and the unmistakable feeling of being pressured into giving up throughout the day that I don’t care to get into. We don’t want to make any hasty decisions, and decide to keep doing everything possible for Emma. We want to give her every chance possible for the next 72 hours. She deserves at least that, and we need to know we have exhausted every resource.

Andy and I call his family and invite them to the hospital, if they want, to see Emma. We are fairly unsure and depressed of what will happen. His sister comes immediately. Emma has started to glow a little, and despite her awful color she is this beautiful child, and it’s not just me saying that, everyone that was around her said the same. We call the nun (who in all honesty was a little scary, but very sweet) and had her baptised. Somehow there is a sense of relief in doing this. Mom and I light candles for her in the chapel. Nieces and nephews are lighting candles, friends and family are praying and getting everyone they know to pray, psychics are channeling whoever they can, powerful meditators are, well, meditating. Anything. Anything to feel like we are helping her in every way.

That night my mom, dad and myself sit down to dinner together for the first time since I was 8, along with Andy and our brother in law. Despite the awful set of circumstances Andy and I are able to laugh at some of the jokes being made around the table. We are able to enjoy each other. We forgive one another for whatever stupid feuds we have kept up over the years. (Being my father and I.) And realise that really, everything other than being happy and healthy and sticking together and being honest and good to one another and getting along is seemingly trivial. We are a family, despite divorces, chaotic schedules and all the worldly distance. We have each other. Nothing else matters.

That night my dad asks to go to the hospital in the wee hours of the morning with us in order to have more time with Emma and his sacral cranial therapy. I am pretty sure I am not spelling that correctly, but it involves slight pressure to the head, and loads of positive energy (the easiest way to explain it) and well, my dad is good at it, among other things, and has seen it help plenty of other people with a wide variety of problems. I am very thankful that this little known resource is available to Emma.

Tuesday, December 18
I am not quite sure of the exact order of events. I make a conscious decision to remain positive from here on out. I am allowed to hold my daughter for the first time in days. Despite the exhaustion, the tubes, the catheters, and the fact that my little girl remains unresponsive, it feels wonderful to have her in my arms. She keeps a fairly tight hold on my finger the entire time, but I am told this is only reflex. We now know the hospital staff by name. I am trying to pump milk in order to keep Emma on a little natural food. My dad confirms what I have been seeing all along, that Emma seems to pop in and out of her body as she decides to stay or go. She seems to gain color when we are around. She radiates warmth and seems flat when we have been away for a while. Her little spirit completely disappears when the main doctor comes around. He is unbelievably negative and we have started calling him “Doctor Happy”. Andy remains our chauffeur. My dad, mom and I take shifts staying with Emma around the clock so that she is not alone.

Wednesday, December 19
Another ultrasound shows again, that they cannot be sure Emma is getting any oxygen to her brain. The first EEG of the 72 hours. It is flat. The doctor on duty in the room with me, the nurse, and the test administrators are all in tears. Emma has no recorded brain activity. I am depressed walking out of the room. A meeting with the head neurologist over the results is not encouraging. He is visibly saddened by our case. We continue to be positive and do all we can. I have a conversation with Emma about trying, about giving us the slightest little bit for continued hope. Both mom and I are able to hold her again.

Thursday, December 20
The second EEG. I remain positive and continue to chat with the staff in the room. It shows the slightest bit of brain activity! There are continuous little bumps on the computer screen. I believe Emma has heard me. She is trying. She seems to be in her body. She seems to be fighting. She, again, is slightly responsive with her hand. However, the neurologist doesn’t see these as positive signs. The hand movement, again, is explained as reflex. The brain activity is thought to be bleak compared to a normal child. I talk with Emma again, thanking her, encouraging her, and asking for more to help convince the doctors. I help give Emma a sponge bath. I read somewhere that doing little things like this helps a parent to let go when they need to. The nursing staff is encouraging me to help with Emma’s care; with the little things I can do. Looking back, they were getting me ready for that final hour.

Friday, December 21
They decide to give Emma an MRI to see exactly what has happened with her head. There are no answers other than a positive Strep B test. It is unbelievably aggressive and the entire medical team is baffled by the situation. Emma has not responded to treatment. It has been reversible in other cases. No one can figure out what the hell is going on. Andy, my mother, my father (also a doctor) and three head doctors of the hospital sat in a conference room to discuss the MRI results. There is massive bleeding in Emma’s brain. The only explanation is that it’s a result of the infection. Four doctors sitting in a room cannot figure out why, how, when. It’s freakish. They simply cannot explain it. The third EEG proves to be flat. Emma is tired. She has had enough. She has let go.

Around a conference table Andy and I are told Emma is officially brain dead. We decide against an autopsy. We decide against donating her organs. Too much has already happened to her poor little body. There is only one thing left to do. Alone together in the room we cry. We hold each other. We are incredibly broken hearted. We decide to give it a little time. We take my parents to the Christmas market and try and behave in a normal way. This is the first “normal” thing we have done since my parents have arrived. We drink gluewine (again misspelled, but it’s hot mulled wine) eat bratwurst and buy Christmas presents.

That night, after dropping my parents off at home Andy and I return to the hospital. We take turns holding our daughter, and doze in the chairs we are in. We talk about our broken dreams. We cry. And we ask why. And we look around the room we are in, with three other newborns in incubators all born too early, and yet with more chance of survival than our daughter who was born on time and perfect in every sense of the word. We notice her perfect pretzel ears, and her perfect eyebrows, and her perfect face. We don’t get home until 4:30 in the morning.

Saturday, December 22
Andy and I take our time waking up and getting back to the hospital. In addition to the hat, rattle, and blanket she has had from home the entire time, we dress her in her shirt that Andy had made for her. It’s pink and says “Made in China”, our inside giggle since we got pregnant in Hong Kong, only now it seems like a cruel, senseless joke. Not wanting to do this, but not wanting to prolong it, my mom, dad, Andy and I say our goodbyes. As mom and dad wait outside, we cling to each other in tears as we watch the doctor take out the feeding tube, and gently take out the breathing tube. Emma looks peaceful. We watch as she slowly changes color, loosing the pinkness to her skin. Not once does her body respond by trying to breath. Slowly she looks plastic, her eyes open, and she no longer looks in the least bit alive. It only takes about 10 minutes for her heart to stop beating. At 7 days old Emma Rose dies. Alone for the last time, Andy and I kiss every bit possible, and then leave. I have a few pictures, ink prints of her hands and feet, and a few memories of her left.

I never knew I could cry so much. Just when I think I can’t cry any more, I can’t seem to stop again. I never knew it could be so hard to smile, or to laugh at what is obviously funny. I never knew it could hurt so much to fucking breath. So much in fact I wish it would stop sometimes. I never knew my heart could be cracked open so wide that I didn’t know how to put myself together again. This is the first time ever that I quite literally have no fight in me. I kinda just go along, hoping things get better eventually. But the sadness is oppressive, and I can only hope I can learn to laugh freely again, sometime soon.

Amy, 34, Currently healing in Taiwan, but really living in Germany

Advertisements