Day 1 - Tuesday, 26 November
As I slowly began my day, Devin went to the NICU to check on Elliot and find out who his nurse was. He was looking great and Devin held him for a while.
Devin's text update to family and friends:
The morning passed and I was finally ready to go see Elliot. Devin and my nurse helped me into a wheelchair and Devin wheeled me to the NICU. When we got there Elliot's nurse was busy feeding her other patient, so we sat and waited, peering at our son inside his little incubator. (I had to sit on my hands because I knew how to get the top off his warmer but I didn't want to overstep my bounds.) After a good 15 minutes our nurse came over to help get Elliot out and into my arms. However, as she was opening the bed she noticed a little twitch in Elliot's left arm and the twitch didn't stop when she touched it. (I didn't see it because we were sitting on the right side of his warming bed.) She called for the attending physician and by the time she got over to the bedside his left leg was twitching as well. By that time I was standing.
My heart stopped. Elliot was having a seizure as we stood and watched.
What happened next seemed to take FOREVER. The physician started to tell us what was happening; explaining that Elliot was having a seizure and that she was going to need our consent to do a lumbar puncture. (My brain was exploding!!!) She said they needed to find out if he had an infection. I interrupted her and asked for his glucose and electrolyte levels, knowing that he was in the NICU because of low glucose and that low glucose and electrolyte abnormalities can lead to seizures. THEY DID NOT HAVE THOSE LAB LEVELS. IN THE NICU?!? I was irate and panicked.
While I signed the procedure consent I was aware of how agonizingly long it was taking the nurses to retrieve the loading dose of phenobarbital the doctor had initially ordered to stop the seizure. Of course I said something about the missing medication. (The staff there must have passed along the fact that Elliot's mom was a pediatric ICU nurse because the physician was saying something about me being "Elliot's parent and not his nurse.") Once the NICU team started setting up for the LP, and the doctor asked for the phenobarbital (again), I knew it was time for me to leave. As Devin backed me away I demanded, through my sobs and not quietly, that they give Elliot his medication, NOW.
And that was that. We went back to our room. We were miserable. I don't even remember what we did while we waited to hear about the lumbar puncture and the health status of our baby boy.
At some point a women from admissions came into our room with birth certificate paperwork for me to fill out. Can you tell I'd been crying? I had a hard time completing that form because I didn't know what sort of outcome Baby Boy Emily Christiansen, now Elliot Zane Christiansen, was going to have. My heart was breaking for my little boy who I'd just officially named.
Both the physician and nurse came to our room later that afternoon and caught us up on Elliot's status. He had stopped seizing just after we left the NICU all on his own, but they dosed him with that damn phenobarbital to be safe. The lumbar puncture had gone well; he was resting and had his own nurse. Neurology had been consulted and had ordered a 24 hour EEG for our little guy as well as a head MRI for Wednesday. The NICU team started him on 2 antibiotics and one antiviral medication, and he was getting a continuous dextrose infusion to keep his glucose levels normal. Besides the lumbar puncture, serum labs had been drawn and we'd need to wait a minimum of 24 hours to find out if the blood or cerebrospinal fluid cultures were positive or negative for bacteria.
Neurological disorder?
Viral infection affecting his brain?
Bacterial infection affecting his brain?
Low glucose? (my pick)
Completely random newborn seizure?
My update to family and friends:
*
That night was very difficult for Devin and me; we didn't know what to think or how feel. We wanted to stay positive but the unknown was terrifying and we felt completely helpless. Of course our minds jumped to the worst case scenario and we questioned whether we should bond with our baby boy and fall in love, just to have our hearts break. We questioned whether or not we should continue to announce his birth until we knew which path we would be walking down.
It was a dark dark night.
I have never felt so sad.
But Devin and I knew we were doing everything we could for Elliot at that time, life's pieces would fall into place, and we'd continue our journey as we always do - together.
Thinking back on our questions now makes my heart ache - but they were real for us at the time.
We just didn't know...
*
Day 2 - Wednesday, 27 November
...But the sun came up and Elliot was doing well. His nurse called us early that morning: no additional seizure activity since the one we witnessed the day before, and he was HUNGRY. Come feed him. :) So we went.
The 24 hour EEG was still going, but I was able to hold and feed him, which was fabulous!
We left the NICU when his nurse started to get Elliot ready to go down for his MRI. She told us she'd call when then were done so we could come back. (As a side note, they didn't need to sedate Elliot for the MRI, they just fed him a bottle of formula and he fell right asleep.)
Meanwhile, we had sent one of Elliot's blankets home with Jill and Mom to take to Yeti. We missed our guy but this picture Jill sent made us happy!
After the MRI Devin and I went back to the NICU to hang with our guy who was looking awesome and adorable and healthy! We talked to the neurologist and he said both Elliot's MRI and EEG looked totally normal! (Deep sighs of relief with ear to ear grins from Devin and me.)
Elliot would continue on the antibiotics until his labs came back negative.
The only issue was that Elliot's foot IV infiltrated while he was getting a calcium infusion. Calcium is extremely caustic to tissue and can cause terrible burns. Luckily, Elliot's nurse was watching his IV like a hawk and as soon as his leg started to turn red she stopped the infusion. It did burn his skin, and he needed a series of 8 (!) shots around the burn site to help protect the tissue. I've had to give those shots to babies and it's so sad to do, but Elliot did well.
Making faces already!
Later that evening my dad got into town and Devin introduced him to his grandson in the NICU. Then Mom, Dad, Nancy, Jeff, Jill, Devin, and I celebrated Elliot's turn-around. It was a good day and so wonderful to have our family there with us.
Another text update:
Day 3 - Thursday, 28 November (Thanksgiving)
Best Thanksgiving ever! Elliot had been moved to the back of the NICU where they parked the babies who were stable but monitored. His cultures continued to be negative and his blood glucose levels remained normal.
Grandpa Stan (Stanpa) arrived that day, completing Elliot's introduction to all 5 grandparents.
Colostrum = Thanksgiving dinner for Elliot
(I was so dang proud of that manually expressed collection.)
Text:
Day 4 - Friday, 29 November
My d-day had finally come but we still didn't know if Elliot would be discharged as well. We were waiting on a few more test results and knowing that hospitals are slow-moving beasts, we didn't expect to hear about them early. I cleaned up, packed up and napped while Devin and Jill began to take our stuff out to the car. Then, we waited...
Late Friday afternoon Elliot was transferred from the NICU to the Well-Baby nursery, and my nurse brought him by our room for some love.
Proud auntie Jill.
We were so thankful for all of her help! She took care of our T, ran errands, hung out with me in the hospital when Devin needed fresh air, kept people updated, and reminded us to stay positive.
We love you Shmill-face.
After we'd passed him around, the nurse took Elliot back to the nursery to give him his vaccination, prepare his paperwork and basically get him ready to be discharged. Once we'd gotten our discharge teaching - bathing, signs of infection, etc - we were free to go. Really? We can just take him home? My nurse walked us to the lobby and waved goodbye as we stepped out into our new world.
Homecoming
When Devin, Jill, Elliot, and I got home we had a host of grandparents and one excited dog waiting for us.
Task one: let Elliot sleep. He fell asleep in the car on the way home and we already knew not to wake the baby. He didn't sleep long, so...
Task two: change diaper. This joint-effort diaper change took about 5 minutes to complete. Yeti was extremely interested in what we were doing.
Task three: introduce Yeti and Elliot. Yeti just wanted to sniff Elliot, and probably would have licked his face off, but we discouraged that right away. "No licks, Yeti." Yeti followed Elliot around everywhere that night.
Task four: take pictures with grandparents.
~ The end.
