Wednesday, June 27, 2012

The first night & morning

While I was in recovery, Jimmy was down in the NICU with the babies. Both babies were intubated and put on ventilators due to their premature lungs. They had umbilical and central lines put in to monitor vital signs and draw blood. Measurements were taken, and teams of three to four nurses worked with each baby to stabilize them. A neonatologist was on staff, along with respiratory therapists and more. Jimmy sat on the couch of the twin's NICU room as all of this was going on. He signed the neccesary hospital paperwork and watched nervously as progress was made on each baby. Jimmy headed back to the Recovery Room to check in on me and went to take care of our belongings.

Once we were settled in our Family Care room, Jimmy's family arrived and we had a quick reunion with Jimmy and my Mom. Within minutes, our visit was interrupted by the neonatologist who asked for a private audience with Jimmy and I.

She asked for permission to transfer James immediately to Presbyterian St. Luke's for nitric oxide treatment and high frequency ventilation. The team at Swedish was having trouble ventilating James due to the condition of his lungs. We agreed. After the doctor left, Jimmy went to the hallway and told our families that we were going to call it a night. We knew that they had heard the news, or perhaps part of it so Jimmy told a brief version and we all parted ways. He headed down to the NICU to see James off.

The mood in the Twin's room was conflicted. On the left, Maisie was being cared for but it was certainly not frenetic. On the right, several people were frantically trying to stabilize James. It was controlled chaos. The nurses and staff on duty would communicate but quiet enough so Jimmy would not hear exactly what was being said about his son's condition. Paperwork was signed as the AirLife Neonatal Transport Team arrived to begin the transfer of James to the other hospital.

Jimmy watched as James was loaded into the incubator on the stretcher, which had a canister of nitric oxide available during the ride. The time was just after midnight on June 27th, and James would arrive via AirLife ambulance to PSL within the hour. Jimmy said he had never felt so deflated or helpless and wandered the halls aimlessly for a while until returning to the Family Care room with me.

We learned later that they did not expect James to survive the transport or the first night.

At 1:30am, Jimmy received a call on my cell phone from Dr "Hawkeye" H confirming that James had arrived to PSL and that he was stable but on a lot of support with the jet ventilator and nitric oxide. On such high a setting, there was a risk of damaging or putting a hole in the lung. Dr. Hawkeye promised to do what he could, and said that the next 48 hours would be crucial to James' outcome. He said, "no news is good news - try and get some sleep."

For various reasons, we were too keyed up to sleep. We were both terrified about the babies, and still dealing with the rush of emotions and adrenaline associated with the previous day's events. I didn't know a lot of the details relating to James and his transport, and Jimmy was quiet for most of the night. He was on the extra hospital bed next to me, phone in hand, staring at the ceiling - but never sleeping. Sleep was slow to come when the nurses come in to do post-op checks starting every 15 minutes throughout the night as well. It gradually got more infrequent, but unfortunately it was a very long night with everything going on. More than anything, we were terrified to get a phone call.

Around 7am, Jimmy decided to head down to PSL to see James. He went by himself - he was exhausted, delirious and hadn't eaten in over 24 hours. It took a while to find parking and the NICU. When Jimmy reached James, he was intubated and attached to a jet ventilator running at 420 breaths per minute. James' little chest fluttered under the high frequency, and to keep him from breathing over the machine he was sedated to a point of stillness with Fentanyl. He met with Dr Hawkeye and the nurse, and worked on keeping himself together given the extenuating circumstances. Jimmy was able to hold James' hand and speak to him a long time about many things. After a while, fighting the urge to sleep at his son's bedside, Jimmy started to break down and decided it was time to leave.

Meanwhile, I was getting the pit crew treatment from the post-op nurses in the Family Care unit. Although not the most comfortable, I was able to get in a wheelchair and get down to see Maisie before lunchtime. On the way back, I called Jimmy, who said he was not doing well. He said he was headed home for a shower and a change of clothes. He also wasn't able to give me information on James, but said we would talk when he returned to the hospital.

Being that I was hormonal, I was becoming increasingly frustrated with the lack of information about James' condition. When I returned to my room, I was so worried about both of them. I had such a terrible feeling. When nurse-midwife Kris arrived soon thereafter, together we called down to PSL to get an update.

I spoke with the doctor who would be assigned to James, Dr K. She gave me a very full depiction of the challenges we were facing from a medical standpoint, and though I was not thoroughly familiar with some of the concepts I wasn't worried. This was our son, who survived what seemed impossible. First, James' lungs were more developed than anticipated but were stiff, thus the nitric oxide treatment to help loosen the blood vessels and essentially the lungs. He was on experimentally high levels of 40% NO. James had pulmonary hypertension, where the blood pressure in the lungs was high and the fetal circulatory system had not quite switched over. The right side of James' heart was not functioning. His brain ultrasound looked clean at that moment, but that could change. He had no joint contractures or musculoskeletal issues they could identify from him being constricted in the womb for 15 weeks. He was on a lot of support and was very sick; more tests would be done tomorrow.

Jimmy returned to Swedish at the end of the phone call. What they call the "NICU Roller coaster" had officially begun. Mom, who was with us went to Jimmy and gave him a big hug. She gave him very stiff instructions: "F$@& 'em!"

We all laughed; I cried a bit because of pain in my incision and abdomen from laughing (it would be a trend for the next few weeks thanks to endless torture from our family), and we all agreed that these doctors definitely don't know what our kids are capable of. We were bound and determined to prove them wrong.

Maisie - 1lb11oz, 13.25 inches long
James - 1lb11oz, 13.25 inches long
Respiratory Therapists work on James, who is in a bag for warmth

AirLife Neonatal Transport Team prepares to take James to Presbyterian St. Luke's for nitric oxide treatment

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