Ellie was born March 4th, 2015. In my gut, I knew something was wrong throughout my whole pregnancy. It didn’t matter that ultrasounds had showed she had a heart defect. It didn’t matter they showed she had clinodactyly, or slightly thickened neuchal skin fold or thickened skin over her nasal bone. None of this did anything but make my pregnancy more stressful and my marriage more frustrating. My husband didn’t have this gut feeling. He didn’t have this insane urge to make everything in life perfect to prepare for disaster. People say these tests help ease your mind so you know what to expect when your baby is born. Well, it’s just not true, at least not for me. I didn’t want to know these things. I wanted to celebrate my pregnancy and that I was growing and nourishing a new life the best that I knew how. I wanted to appreciate my husband for all he does instead of be angry at all he isn’t doing. As it turns out, there was something wrong, but most likely it had nothing (for the most part) to do with all the soft markers on ultrasound photos.
After Ellie’s birth I got to hold her very briefly before she was whisked away by the NICU team. Thank goodness my midwives and L&D nurse were so amazing. They recognized Ellie was going to need extra support and called in the team as appropriate. After I was finished up in the delivery room I took a ride in the wheelchair to the mom and baby unit to recover for a little bit. My husband, Jeff, had gone to the NICU with Ellie so I waited for him to come back. I don’t remember much about what was going on at this point due to the extreme exhaustion of having been awake and in labor for over 48 hours. I didn’t really know what was going on and it hadn’t really hit me yet. When my nurse came in she wheeled me to the NICU. I knew at this point there was meconium in my amniotic fluid and that Ellie was in respiratory distress… no big deal, right? She’ll have a week of antibiotics and she’ll come home. Or so I thought. I wasn’t prepared for what I’d experience on my trip to greet Ellie.
So this is Ellie. I didn’t know her normal birth stats like- How much did she weigh? How long was she? How big around was her head? What time was she born? Instead the questions I was asking were- What was the huge bruised bubble on her head? Why was she frog legged? Why was her arm so bruised? What was wrong with her? Why isn’t she moving? Why does she look different? Nobody had answers. Everyone tiptoed around me like I was a bomb that would explode if exposed to any details about my baby. I felt as though I was treated like a crazed animal incapable of handling the truth. For me, being in the dark is hard. I wanted to know so many things and everyone was keeping those things from me. Of course, nobody else really knew why she was the way she was either.I was angry and scared and confused. Upon my first meeting Ellie in the NICU I had been wheeled in to see her in the wheelchair having just given birth, I stood by her isolette (that’s the high tech hospital bassinet) and I greeted her and stroked what little skin I could since it seemed every inch of her body was covered in some sort of tube or wiring. Quickly I was told to back away, not to touch her and not to talk to her. She was “sensitive”. WTF do you mean she’s sensitive? I’m her mother. She knows me. I am the only one who she is supposed to need right now.
I couldn’t touch her.
I couldn’t talk to her.
I couldn’t hold her.
I couldn’t feed her.
I didn’t know how to be her mom.
I was devastated. I mean, this is my second child. Not like I’m a pro but this isn’t my first rodeo. My first child has turned out okay so far. The only things I knew how to do as her mother, I was unable to do because she was so fragile. Everything you learn in prenatal or birth classes went out the window. Kangaroo care is so important, but not for my baby. Talking and singing and reading is so great for your baby, but not for my baby. Breastfeeding is the best way to feed your baby, but not my baby. I wanted to tell her everything would be okay. It really wasn’t. I wasn’t okay. She wasn’t okay. Every second was so painful.
At this point my child needed medical professionals and there wasn’t anything I could do except pump breastmilk that would later be fed to her via feeding tube. While I cried, sobbed and worried feeling helpless and hopeless, that’s exactly what I did. I pumped and pumped and pumped some more.Thankfully we were able to hold Ellie the day after she was born (which seemed like an eternity). Nathan came to meet his baby sister and ironically, he wore his “Santa’s Little Helper” shirt. Nathan had decided long before Ellie was born that we should name her Reindeer Song. Quickly, Reindeer Song had become Ellie’s first nickname. When Nathan looked at his little sister he was quiet at first. But then he said pointing at her “she’s my sister”. She’s pretty. Even though I was pretty sure she was deformed, he knew she was beautiful.We cried every night we had to leave our baby with strangers. Every night I worried I’d receive a phone call saying she’d died. I was already thinking about what would happen when she dies and how soon would I have another baby. Maybe I could just pretend this was all a long nightmare and I could wake up and just forget it ever happened. But it was real. This was real life even though I couldn’t grasp that. A few nurses really bonded with us and with Ellie. We still remember them and always will. One nurse gave me a pep talk one day. I didn’t want to hear it but it was important. She told me I needed to pull myself together and be strong for Ellie. Ellie needed me and I was her mom. This was the first time I felt like I was important to my child. She did need me. Another day I walked into her NICU room and the nurse was taking the time to sit next to her and read Cinderella to her. I cried happy tears and thanked her over and over. When your baby is in the NICU it’s like your child is lonely with no loving interaction. Every interaction seems like it’s uncomfortable or painful. I will never forget that moment. It was so important to me that Ellie be treated like a person and not a list of symptoms, diagnoses, and diseases. This was the first I’d felt like we might be normal some day and I had hope.In Ellie’s first week of life she’d been diagnosed with severe hypotonia, dislocated hips, contractures, micrognathia, dysphagia and who knows what else. It seemed like she spent most of her days and nights undergoing tests and being evaluated by specialists.
After a week in the hospital Ellie was moved to a higher acuity NICU. A $15,000 escort via ambulance and she was reborn into a whole new world. While Ellie was on her way, I packed the car to go only to realize my car wouldn’t start. My mom and a friend rescued us and we eventually got to the other hospital. Part of me felt like I just sent away my child and gave her up. I was outside in the fresh air and for a moment, I could pretend this was all a bad dream and that I hadn’t even had a baby.
We arrived at the new hospital. It was bright. There were windows. We had our own private room with a door in the NICU. We had privacy. We had a little more peace and quiet because the only alarms we had to hear were Ellie’s and not the alarms of every baby in the NICU. The new hospital has an awesome play place. And a Child Life team. And social workers. We were bombarded by specialists. We were overwhelmed by the positivity and excitement of the doctors and med students. This was a challenge for them and they were up for it. Most of all, they weren’t sad. They helped teach us to celebrate our baby instead of fear her. This may have been the first time I had smiled in over a week. This place was hopeful.
The next few months looked like this: Meet with specialist.Run tests. Get test results back. *Sigh* okay another negative test. Good it isn’t THAT disease or syndrome. More alarms because of high heart rate and low oxygen. More heel pokes. More IVs. Xrays. MRIs. EKGs. More pokes and blood tests. Oh yeah and I was pumping milk 6+ times per day. And I had to eat. A few close calls. A few emergencies. Emergency intubation. Extubation. Reintubation. Learn Ellie’s care. Prepare to go home. Nope we aren’t going home anytime soon. Prepare to live at NICU. Trach surgery. Learn new ways to care for our child. Ventilator trials. Fail. Fail again. Ventilator trial failure after failure. Ellie didn’t like change. She didn’t like to be pushed. She was moving at her own speed and on her on clock. I fought with doctors and respiratory therapist one after another about letting Ellie lead the way. We have to listen to her. She’s telling us she needs time and we need to be patient. G-tube surgery. Learning more care for her. CPR class. Prepare to move to the Stable Vent Unit. That’s the short version of our NICU stay.The Stable Vent Unit was nice. We had our own private bathroom and a beautiful view. In fact, in the distance we could even see the hospital Ellie was born in. It was like I was able to peer out the window and see just how far she’d come. It was spring. Flowers were blooming and the trees were full of new life. I was welcoming these changes. Our nursing staff was really nice. They helped foster our independence and taught us how to be in charge of Ellie’s care. We would now spend 5 weeks preparing to take Ellie home and do this without emergency staff on hand at the push of a call button.We took Ellie outside for the first time once we got a stroller and were trained enough to take her out of her room. I felt free. It was so scary. Even though we were still in the hospital we were responsible now. We were now her first responders. We didn’t have a pulse oximeter. The usually busy halls of the hospital seemed dark and empty. Where was everyone? What if we have an emergency? We were brave enough, or maybe just desperate for normalcy, that we took Ellie to the courtyard. The lighting was different. Her lips looked pale. We suctioned her. She was okay but I wasn’t. This was terrifying. I didn’t know my baby well enough to know if she was okay or not. How can I be her mom and not be able to understand her needs?
It was time for our 24 hour test. We had to do all of Ellie’s care within her hospital room with no help from any nurses, doctors or respiratory therapists for 24 hours. We took turns caring for her throughout the night. We were exhausted. It was scary. We didn’t do a perfect job but we did keep her alive. At one point the vent humidifier was beeping. I just dumped the condensation out of the hose and silenced the alarm. It kept beeping. Then Ellie’s numbers started dropping. We didn’t panic but we acted quickly and we performed an emergency trach change. We did it on our own. Phew! Later we learned the plug happened because the water in her humidifier bag was gone. It was empty. The humidifier was beeping because it was dry. That explains the mucous plug. In our defense, we had asked the respiratory therapist on duty (one we hadn’t met before) if Ellie needed a new bag of water before we started our 24 hour test. She said it was fine and it should last several days. Apparently Ellie needed more moisture than most. We almost failed our test but thankfully when our regular nurses were back on duty they and the nurse manager stood by us and defended our skills and abilities to care for Ellie. Did we have a problem? Yes. Did we solve it? Yes. That’s what matters. We made a mistake but in the end, we made it right and we did it on our own. We were happy the first emergency trach change happened in the hospital where we’d have backup if we needed it. It was a great place to practice.Ellie’s birthday is March 4th. That’s what we’re doing. Marching forth. Ellie was pretty stable and we’d, according to the professionals, mastered her care. They said we were ready to take Ellie home. We packed her up. Triple checked everything and loaded her into the car. We were free!