Tuesday, April 29, 2014

Bring up the Dig

My heart has been twisted and pulled in every possible way this April. 

Eli will be a month old in 3 days. 





It's amazing how much we humans are capable of. The ability to feel so many things. -To feel complete joy and peace in one moment and to feel fear, anger and sorrow so deeply the next. We fall down, we pick ourselves up. The clock keeps moving and so do we. We have a good amount of fight in us, we do.


Last Thursday afternoon, he went limp. It was right after I gave him his 0.5 ml dosage of Digoxin. 

I couldn't get him to cry. That's when I started to cry. I quickly laid him on our cold tile counter top and I began wiping icy water over his head as my tears fell on his onesie. Nothing. He lay there flat and straight. He was lifeless. I begged God to help him. Please God, not this. Please God. Please help him.

I looked closely and could see his chest slowly rise and fall. He was still breathing. Keep breathing, Eli. Drastically trying to feel his heart beat with my weary hand. The other hand moving things around in desperation to find my phone. Looking closely at his chest. Is he still breathing?

Josh pulled in right then and there. Thank. God. Thank you, God. We need to call an ambulance! I yelled to him in desperate tears. Eli isn't moving! I can't wake him up! He took Eli from my arms and held him up to his shoulder. He began to pat his back hard and Eli slightly moved. He let out a good, loud burp. Josh cradled him and Eli opened his eyes for a few moments. The rest of his body was sluggish. He didn't have the energy to move. We remembered the cardiologist talking about something like this, so I called Dr. Smith. He told us to come to the E.R.. that this was definitely unusual for the medicine to react this way. 

Meanwhile, Liam had grabbed the laundry soap off the washing machine and the loud "clug clug clugs" confirmed that soap was flooding the floor in our back hallway. 

A quick wipe down of the floor with a dirty towel and my thick socks, monstrous tears, yelling to get ready, flying shoes and jackets everywhere. We were on our way to the emergency room with our limp baby. His eyes were closed again. 

On our way to the hospital, I tried to wake him. I'd lift his arms, just for any sign of life. They would just drop at his side. "Is he ok?!" Josh would yell from the front seat. "He's breathing," was my repeated response.

I looked at my baby thinking, are we going to be those people? The couple with 4 beautiful children and one dies and it is all so unfair? Is this really happening? Tears. tears. tears. The sun stretched through the windows. 


Arriving to the hospital, Eli slowly opened his eyes and it was as if the life had just breathed into him again. He started to scream and he screamed the whole way into Triage. I almost screamed I was so excited to see that life in him. They set him up in a big bed and we watched as they did a whir of tests and scans. Trying to find his little veins. The doctors and nurses processing everything in front of us. When they put in his IV, he just laid there. Completely mellow. Eyes wide open. Barely moving.

We saw a welcoming face at the end of his bed during all of this. Pastor Frank had come up to pray for us. For him. For our family. We hugged and I felt so grateful.


Dr. Smith came in and told us they were unsure as to what exactly happened. He wanted us to stay the night in the ICU so he could be observed. I was happy about his decision. When I thought about bringing him home, tears rolled down my cheeks. What if this were to happen again? I was horrified at the thought. 


They loaded his bed with an oxygen tank, heart monitor and other emergency equipment. We rolled down the hallway and headed for the top floor of the hospital. 

Entering the ICU, we passed by several rooms. ...All filled with young children and screaming infants in metal cribs. Exhausted looking parents sitting in rocking chairs under dimmed lights. We passed by a mother standing next to a bald headed little boy that seemed just a little younger than Ashton. He sat playing a game on his mother's phone, appearing to be a little too comfortable with this place. My heart broke. His mother looked down at our little Eli in his big bed and smiled at him. I smiled at her as we rolled on.

Heart beats. Breath. Life. Love.

At that moment, I had a deep-down, primal understanding of everything that is most important to me.


It was a sleepless night. We took turns holding our tiny boy, stroking his forehead. Watching the clock. Sipping water. Joking with the nurses about our month of hospital touring. St. Joes, Crouse and Upstate. Talking about wanting to make friends with some veterans at the VA down the road just so we could visit there too.

They talked about drawing his blood to test his Digoxin levels again in the morning. I prayed I didn't give him too much or too little. I second guessed everything. I knew I have always checked and checked again before we gave it to him but at a time like that, it's hard not to question everything. It brings a serious ache to your brain that can only be healed with a dose of good news.


We thought this was cute.

I felt honored to be holding onto this little precious life. Watching him rest. Sucking every possible detail out of those minutes. Thank you, God.

By the morning, his heart still hadn't missed a beat. He was doing great. The cardiologist came in around noon-time. The Digoxin levels were perfect. He believed that Eli may have gotten an air bubble in his throat when he swallowed his medicine. He told us how this always makes a heart rate slower but because of his medicine and having that already slow his heart down, that can put him into a coma-like state. He talked about giving us a heart monitor for when these things happen again. That way, they can get the details immediately.


We have felt fearful of every last hiccup, cough and sneeze since.

I think I will have visions of the monitor with colored lines explaining my child’s life for a long time.

We were discharged around 4 p.m. Friday afternoon. Eli and I got our wheelchair ride down to the front door. I felt proud to be sitting there with my baby instead of a bag of sandwiches and fruit cups that I had on the early afternoon of April 4th. I had my lively, screaming son and I was never more thankful for those screams. We made one heck of a loud exit.

We had to hurry to pick up the other kids so we could return home by 5 for his next dose of medicine. 

This is just a blip in the life of Eli Grayson. I can't wait to see what our wee 10-pound human does in this world.



He's been smiling since April 3rd.




Over this past month, we have received so much love from family and friends. They hugged my weak body, infusing my bones with strength to deal, they brought food, they have offered to help. I have been so thankful for those distractions. Really, people are so good and life is so great.



I didn't know I could handle what we've been through and remain upright. I love him so much. Life is simply inhaling and exhaling. Breath by breath. Inhale. Exhale. And, still, no map of how to recover so we are just honest. Even when it’s ugly and unfair, honesty with our feelings will get us there.











-The last two weeks in pictures (I am also equipped with an iphone now. I am unstoppable. I hoard pictures)-


















We've used up the last of the milk I pumped for his NICU stay.








Egg hunt with friends at Sullivan Park






Josie won an easter basket






A surprise from Jo Jo


Egg coloring with Makenna










Happy Easter!
























The bunny brought sunglasses






I feel so proud to say they are mine.










This is Ashton's teeth clenching, "HE'S SO CUTEEEE" thing. He gets it from his mom.
















Kids everywhere!


Happy Birthday Moo!






























Liam got into the nailpolish...












Ashton is so proud he can make toast. The kids play a game they call "sleepover" where they pretend they are sleeping so they can wake up in the "morning" to make and eat more toast.


























Much love in this place.


xoxo, Jessie