“You Should Be With Him If He Passes”

I started writing this post almost a year ago on
the one-year anniversary of Jack coming off
ECMO. It was painful to write so I don’t expect
it to be pleasant to read. It’s probably not one
to attempt while at work.

November 22, 2011 will be a day that Matt and I will never forget. It was the day we were told to say goodbye to our dying son.

Two days previous, I was sitting at Jack’s bedside; the last bed in a ‘room’ which resembled army barracks after a midnight surprise attack. Two long rows of isolettes positioned side-by-side, holding babies who were at any stage between healing and dying. I was still on maternity leave from work and spending my entire days next to Jack. Between Jack’s impromptu naps, we would talk, read books and smile at each other. And I would pray for good updates as I waited for daily rounds.

Dr. Lim and Dr. Frisher approached the bed space with their team of fellows, specialists, nurses and residents.They started talking about Jack’s progress; he was improving every day and was healing well after his CDH repair surgery. Besides the fact that his ECMO circuit had a number of replacement membranes, his biometrics showed that he was ready to come off ECMO and breathe only with the assistance of a ventilator.

After rounds were competed the doctors moved on to the next bedside and left Dr. Lim and Dr. Frisher to further explain their plan. They planned to take Jack off the ECMO circuit and allow his lungs to exchange gasses on their own. A review of the benefits and risks were presented and releases for medical treatment were signed. I was so excited for the progress of my baby’s health and quickly called Matt and then the rest of the family. I was bursting at the idea of Jack getting well and someday breaking out of his medical prison.

There wasn’t much for us to do in the way of preparation apart from finding emotional readiness. This was the next step in Jack’s journey and it was a do-or-die step.This was the only next step.

The morning of the procedure came early. Surgery on these fragile kiddos take place in the NICU right there in the bed space and all visitors are asked to leave the pod so the area can be sterilized. Matt and I would have to make our way into the pod to say our ‘good mornings’ and give our kisses before they could start to ready the area for the 7am start time. We were told that Jack would be mostly sedated with Midazolam (versed) by the time we arrived in the morning. This, however was not the case. He was wiley and kicking off nurses. At first, I was concerned but Dr. Lim assured me that this attitude and strength would come in handy when it was time to heal. Matt and I gave Jack our kisses, told him we would be back in when he woke up and finished some last-minute details with the doctors. Then we were banished to the waiting room.

The waiting room was half filled with our family and supporters who would spend the next two hours distracting us; and doing a great job at it too. Occasionally a nurse would come out and give us a report that Jack is doing great and they should be completed soon. Finally, after 2 hours, the APN came into the waiting room and told us that the procedure was a success and Jack was off ECMO. They were closing him up and will need a couple of minutes to finish up and move the circuit out of the bed space.

I couldn’t believe it. I knew that the intended result of the procedure was to take Jack off ECMO, but was completely amazed that it had finally happened. Looking at that massive machine for 15 days was so de-humanizing and intimidating. And now it was gone.

For the next hour, we sat in the waiting room with anxiety. Evidently, moving the circuit was a little more involved than I thought. But we were soon granted entry back into the pod and were able to see Jack.

When we approached the bedside, I was overjoyed and destroyed. There was no goliath of machines looming over my baby’s body. The space was clean and free from obstacles. But Jack didn’t look like the baby I kissed that morning. He was skinny after the circuit took with it all his extra fluid. It exposed his real weight which was far from ideal at only a little over 5 pounds but with 20 inches of length. With the loss of body mass, the surgical silo holding his intestines outside his abdomen looked large and obtrusive. And his skin had a yellow color; not a glow and not jaundice, but a look of sickness. Something I can’t quite explain. But the monitors next to his bed said they were breathing for him and he was exchanging his own gases. The procedure was a success. I cried on Matt’s shoulder.

After a long visit with the new Jack and a complete breakdown of events from the nurses and doctors, Matt and I headed out. Matt had to go in to work and I was in much need of a shower. I planned to return after my shower and wait for Matt to complete his partial work day.

Weeks of NICU visits at this point had trained me to look the length of the pod to Jack’s bed space before I entered. I wanted that little bit of warning incase something was happening. When I arrived back at the NICU, this was no exception and I scanned to the end of the pod. I could see a collection of doctors and nurses, all still in their green surgery scrubs, standing around the head of Jack’s bed. Dr. Lim stood under the monitors, staring up in contemplation. When I approached the bedside, Dr. Lim had explained to me that after only a couple of hours after the procedure, Jack started to hold his breath and was having trouble exchanging his gases. He was fighting the ventilator though he was still under the control of Midazolam. The carbon dioxide was collecting in his blood and causing it to become acidic. The CO2 results of his blood gasses continued to climb. If he continued this path, even for only a couple more hours, his organs would start to fail, one by one until he died.

I begged that he do anything in his power to stop this and quickly left the NICU to pick Matt up from work.

On our return, the nurses and doctors were where I had left them and there was a little more panic in their faces as we approached the bed space. Dr. Lim told us that Jack’s CO2 was so high, it was no longer being measured by a numerical value. Just a ‘more than’ on a monitor. He asked us to sit down so we could talk. He said that Jack only has about 30 minutes left. They are doing all they can but haven’t found what changes need to be made to lower his CO2. They will continue to work until they find a solution or the end and suggested that we should go sit with Jack. I felt like I lost all control. I couldn’t breathe and double over in my seat, hysterical. Someone handed me a trash can and I started to heave with my head half in my basket, crying inaudible words. This is when we met Barb.

Barb had signed up to be Jack’s primary day nurse and started on the day that he was coming off ECMO. She walked up to me with a box of tissues and assisted me in moving the chair over to Jack’s side so I could hold his hand. She told me to tell him that I loved him and that I should be with him if he passes. Matt came to stand beside me and we held Jack’s tiny hand. I told Barb that Jack knows that I love him and I won’t say goodbye to a baby who has to be okay.

The monitors started to beep louder and more consistent. His heart rate was dropping and his respirations were down to about 6-10 a minute. The monitors were broadcasting that my baby was dying. I said a small prayer as doubt and fear crept into my head but kept ahold of his little hand and told him that he would be fine. He could beat this.

I assume in a move of desperation, Dr. Lim demanded that the RT change the setting on his ventilator. It was a lower setting which would control his breaths a little less and could possible stop the little breathing that Jack was doing, but it was the only thing that hadn’t been tried. The settings were changed and the doctors and nurses stood still, watching the monitors and waiting. After only minutes, the monitors started to slow the alarms. Jack’s heart rate began to rise and he started breathing a little more frequently. His little fingers and toes started to twitch a little. There was such a feeling a slight relief that you could feel the air getting cooler and lighter.

Over the course of the next hour, Jack’s CO2 had dropped to a level which was measurable. Though this was still a critical point, he was moving in the right direction.

Matt and I stayed with Jack until late that evening when the nurses finally kicked us out to return home for some sleep. Jack’s CO2 continued to dropped throughout the night and into the morning. And you know me, I called several times in the middle of the night because I knew that they would be taking hourly blood gas checks until it reached safe levels. Dr. Lim even answered my calls a couple of times that night to give me the results himself. What a dedicated life saver!

Jump forward to present day. Jack is approaching two years old and is on his way to a healthy and ‘normal’ life (what is normal, really?). Though his attitude and feistiness probably saved his life that day, we still defies the slightest assistance after surgeries. He still holds his breath and desaturates. But who am I to coach him on his use of stubborn behavior?

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The Birth Story – From My Perspective

Since all is well in the Roettgers house and there is nothing to report, I thought I would take a little trip back in time. I will start with the story of Jack’s birth. It will be from my perspective so there will be no photos, but broken memories with holes that can be filled with stories from other witnesses.

Jack’s introduction into this world was long awaited and stressful. By the time we were all ready for his arrival, I had been on bed rest at Good Samaritan Hospital, Cincinnati for 9 weeks. There were many ups and downs (mostly downs) and depression and doubt were slowly creeping into my brain. In the previous weeks, Jack struggled to gain weight and my premature labor wasn’t helping matters. He only became eligible for delivery onto ECMO one week before his planned delivery. Many of the doctors were explaining comfort care and trying to convince us that this was a perfectly acceptable option to take. His lungs were undetectable in MRI and his liver was starting to creep its way into his chest cavity. Things looked bad. Looking back, things looked really bad. Looking at his MRI as a mother without a medical background, his intestines were taking over his chest. It looked like millions of worms had slithered their way into my babies body and were taking over. Making bold white swirls over his lungs. But Matt and I could not understand having to make a decision of life or slow death. We faced forward and counted the days till Jack’s birth.

The night before Jack’s birthday, I took two Ambien and asked Matt to cuddle with me until I fell asleep. Without a second thought, he climbed into my small, uncomfortable hospital bed with me and contoured his body around my big belly. We were both scared, but Matt stayed strong and listened to me sob my list of concerns. I asked him if he thought the surgeons would let me put off the delivery for one more week. It was only week 38 of the pregnancy and Jack hadn’t made a move for the exit yet. One more week could only be a benefit, right? And at least case, Jack would have one more week to be safe. And possibly just one more week. But I knew the answer and didn’t think past my initial question to Matt. The only request I had for Matt is that if Jack wouldn’t make it and I was still under general anesthesia, I wanted Matt to tell Jack that I love him and I tried my hardest. Matt accepted my request but ensured me that he would not have to repeat those words and that I would be able to tell Jack, “I love you” myself.

3 a.m. came early and it was time to wake up and climb onto a stretcher. All my transport from Good Samaritan to Children’s Hospital had to be in an ambulance and Matt was not allowed to ride with me for insurance purposes. I really don’t remember much about this ambulance ride to be perfectly honest. I was running through the day in my head. I wanted to be as ready as I could for any outcome and my preparation had certainly consumed my thoughts.

I was wheeled to the 7th floor were I would be hanging out for the rest of the week during recovery. I was fitted with a stylish hospital gown, some orthopedic socks to prevent deep vein thrombosis and an IV which would soon deliver a medication that would ‘take the edge off’. I was told that it works so well, the nurses would tell me when it was time for me to say “I love you” to Matt since most mothers feel so chill, they forget to say any parting words to their husbands. I was looking forward to this relaxed feeling. It felt like an eternity of labs and vitals before someone came to the room to motion that they were ready for me. They: from what I understand was about 40 people, all with different specialties who were involved in the delivery and all ready to do what it took to get Jack and myself out of the operating room safe and alive. For the reason of space availability and the fact that I was going to be under general anesthesia, Matt was not allowed in the delivery room. Instead, he was dressed in teal scrubs. The purpose, which was known by everyone but Matt at the time, was to allow Matt into the delivery room incase something went wrong and he would be the only parent available to say goodbye to Jack.

As I laid in pre-op, Matt held my hand while I complained of dehydration. I was not allowed to drink anything but continuously had to urinate due to all the water I had drank the day prior. I was repeatedly asking if it was time for me to tell Matt, “I love you” until they started to move me down the hall. Matt took my glasses after I took one last look at the digital clock in the hallway. It read a couple minutes past 10 a.m. and I made a remark that I should be out of surgery around noon since the surgeons told us to expect a 2-3 hours surgery. The nurses confirmed my timing and told me to say my goodbyes to Matt. At that point, the holes start to speckle my story. I don’t remember my parting words to Matt or entering into the operating room but I do remember seeing the inside of the door as it was being closed behind me. A nurse walked up to my transport bed and asked me to scoot to a bed that I was wheeled along side of. I managed my best ‘scoot’ and was suddenly laying on the operating table with a mask over my mouth and nose. I followed the instructions to breathe deep.

Lapse.

I opened my eyes to see the previous nurse sanding in front of me. I was sitting on the edge of the operating table with my legs hanging over the edge. My arms were draped over her shoulders and she told me to take a deep breath. This was the epidural.

Lapse.

I opened my eyes again to see the same clock on the hallway wall which I saw on my way into the operating room. It read a couple minutes past 5:30 p.m. I questioned the time and asked if everything was okay. I didn’t know who was with me but I knew I was moving.

Lapse.

I could hear a heart monitor beeping to each heart beat. It was the same sound that I had listened to twice a day for 9 weeks. It was Jack’s heart beat through the non stress test. For one moment, I was relieved to hear this. I must still be pregnant. Jack is still safe and using my oxygen and my body heat. I opened my eyes slightly to see my belly. It was gone. Jack was gone and I was listening to my own heartbeat.

Then it hit me. The epidural was gone and it took all other pain mediations with it. My vision went black and I could feel everything. As I was crying in pain, the nurses tried to explain to me that the anesthesiologist had left my surgery before the completion due to the long duration. He was needed in another surgery but would return before my pain management wore off. This did not happen for some reason and I would have to wait until he was available to prescribe some more medications. My consolation was a lady who would perform spiritual healing over my body while Matt rubbed my feet. This was not the same as drugs. I had never been in so much pain in my life. It felt like my abdomen was being ripped open and nobody was helping. During my jerking and thrashing, a nurse came to check my abdomen to make sure that I hadn’t torn open any sutures. This required her to press on my stomach to feel the incision on my abdominal wall. At her touch, I could see fireworks going off between my eyes and my brain. The “worst pain” that I had felt previously was just overshadowed by this torture technique. I begged for her to stop. I couldn’t take anymore pain and she was just bringing more. She ensured me that she would be finished soon and that it was a necessary check. I certainly could have done without it. At this point, I noticed that Matt was gone. He was no longer rubbing my feet. I looked around for an explanation but noticed that more than Matt was missing from the recent scene. There were nurses missing that were once present and there was commotion in the hall near my post-surgery bed space. The nurse who just held me down to assist in the pain production informed me that Jack was coming down the hall and asked if I wanted to see him. Matt had my glasses but I was pretty confident that what I saw of Jack, blurry and from a distance would make me a happier patient. The nurse moved to the side to reveal my baby, laying on a bed covered in the same teal cloth that Matt and the surgeons were wearing. He was covered in tubes and not making any movement. He was intubated, covered with IVs and heavily sedated. And beautiful. There we were. Mother and son. Laying feet away from each other and all I wanted to do was kiss his forehead. I asked a nurse if he was okay. I remember her response well. “He’s doing okay”. It was like a symphony to me. My pain was gone for just one moment. Jack was okay. We could move forward. The hurdle that I had been dreading for 8 and a half months was past us. We could now approach the next hurdle.

This was the closest I would get to Jack in 24 hours. They began to wheel him away and a nurse informed me that she received some medication from the anesthesiologist.

Lapse.

I awoke in my room on the 7th floor. 4 floors from where my baby laid, silently fighting for his life. Family came up to see me and let me know that they saw pictures of Jack and he was amazing. They all humored me when I said he was the most beautiful thing I had ever seen. The reality was that Jack had a rough start and was looking like a tired, old man. I still thought he was beautiful. Everyone did. He was already a survivor and he would make it through the night so we could meet him and so I could deliver my most important message myself. “I love you”. Matt was right.

Lapse.

I woke up several times during the evening and night but remember little. My last memory was opening my eyes and Hawaii 5-0 was on the television. My breathing was getting faster, my heart was racing and I was getting very anxious. I called over to Matt and told him that I thought I was having an anxiety attack. The nurses were called in and took my vitals. My heart rate was fine and so was my respiration rate. It was all in my head but I couldn’t get past it. I was losing it. Whatever it was. I asked that they turn off my narcotics. I only wanted Motrin and something to calm me. A healthy dose of valium would do the trick.

Lapse.

I would later learn that Jack’s delivery did not go as planned and resulted in the 5 hour delivery versus the 2-3 hours which was planned. The plan was to partially deliver Jack, sedate him and hook him up to a heart/lung bypass machine before cutting the cord and delivering him completely. This would keep him from taking his first breath and allowing the machine to breathe and pump blood for him. After over 90 minutes of my abdomen being open, Jack was not hooked to the bypass. My cervix started to contract. The options were to continue trying to bypass Jack, causing me to contract, resulting in a hysterectomy or cutting Jack free and hoping for the best. My OB, Dr. Habli chose my safety and Jack was cut free. My contractions were stopped and Jack was eventually successfully placed on ECMO.

I don’t know how this all worked out so perfectly (in hind sight) but I know that God was looking over us all and there were certainly some key players involved in this success story.