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Friday, December 4, 2009
We soon found Nathan's room at the far end of the PICU. They were getting ready to transport him to the OR. He looked so awful. Pale. Fragile. Broken. Motionless. Our sweet little boy......
Seeing him was excruciating. Not being able to do anything about it was torture.
Fortunately, we didn't have to wait very long before they started moving Nathan to the OR. We took the short but long walk from the PICU to the OR with them, doing the best we could to hold back tears.
And then it happened.
Sometimes, when things are the most dark, when you are the most down, when everything looks the most bleak, God shines a ray of hope down to your soul, a "tender mercy" to let you know that he is still there and still watching over you.
As we approached the door to the OR, Nathan opened his eyes and looked at us. My eyes filled up with tears.
"You stay with us, Son! You stay with us!" I yelled to Nathan as they wheeled him through the doors and directed us to the waiting room.
Thursday, December 3, 2009
Tuesday, November 24, 2009
The good thing about being the first on the schedule is that there is a very low likelihood that you will be bumped.
But it also meant that we had to get up at 5:30am in order to get ready and be there in time to be with Nathan before the procedure.
In order to close the VSD, the plan was to insert a catheter into a blood vessel near Nathan's groin and then advance it up to one side of his heart, through the hole into the other side of the heart and then advance it out through Nathan's neck.
Half of a closure device, or occluder disk, is then inserted in through the catheter in the groin and the other half through the catheter in the neck. They are then advanced toward the VSD where the disks are connected to close the hole. Over time, the heart tissue would then grow around the occluder making it a permanent part of the heart.
We arrived at the hospital and got to spend about 20 - 30 minutes with Nathan before the medical team began to arrive to take him down to the Cath Lab. It took nearly a whole team to transport Nathan from his room on the 4th Floor to the 1st Floor where the Cath Lab is.
We followed them down to the entrance of the Cath Lab where we gave Nathan our love and told him that we would be back to see him once the procedure was over.
They gave us a restaurant-type buzzer and told us that they would page us when the procedure was over.
And then we waited.
Obviously, doing nothing was not an option. But did this have to be done right now? Couldn't we have more time to think about it? Nathan was stable, but still seemed so fragile.
The medical staff were highly in favor of the Cath Lab procedure over open heart surgery.
So after 2 days of thought, discussion, and prayer, we decided to go ahead and have them close Nathan's VSD in the Cath Lab. We informed them of our decision on Friday, October 19th, and they scheduled Nathan for the procedure on Tuesday, October 23rd.
It wasn't a decision that I was very comfortable with, but it seemed that it was the best option, considering the alternatives.
We had had only 1 day to decide on the procedure and over 3 days to agonize over it. And agonize I did. I worried all weekend if we had made the correct decision. There was still time to back out, but if we did, would that be the best decision for Nathan? Nothing seemed to calm my fears or ease the burden I felt upon me.
After more discussion, we decided that it would be best if Nathan got a blessing some time before the procedure on Tuesday. With no family in the area, I thought it would be nice and appropriate to ask the leader of our local church congregation if he would be able to assist me in the blessing.
So at church on Sunday, I explained to him Nathan's situation and our fears over the procedure and asked if he would be able to come to the hospital either that night or the following night to help give Nathan a blessing. He said he would check with his wife and get back to us.
Later that evening (later than I anticipated), he called and informed me that due to prior commitments, he would be unable to come to the hospital and assist.
Due to the lateness of the hour, that left us scrambling to try and find someone who could help. With really no one that we knew very well or that we thought would be able to drop everything and come up to the hospital on such short notice, I was thankfully able to get in touch with a friend from work and asked if her boyfriend (whom I had never met but that I knew was from the Salt Lake area) was available and willing to help. Thankfully, he was!
They met us at the hospital later that night and he helped me to give Nathan blessing. I appreciated the help. And while not completely assuaging my fears and forbodings about the procedure, I was very grateful for friends and the Priesthood that night.
Sunday, November 22, 2009
A VSD is a hole in the wall of the heart (the septum) that separates its left and right sides and occurs between the two lower chambers (ventricles).
In a normally functioning heart, the left side of the heart only pumps blood to the body, and the heart’s right side only pumps blood to the lungs. When a VSD exists, a large amount of oxygen-rich blood from the heart’s left side is forced through the defect into the right side. This blood is pumped back to the lungs, even though it has already been refreshed with oxygen (see diagram above).
Unfortunately, this causes the heart to pump more blood. The heart, especially the left atrium and left ventricle, will begin to enlarge from the added work. High blood pressure may occur in the lungs’ blood vessels because more blood is there. This increased pressure is known as pulmonary hypertension. Over time, increased pulmonary hypertension may permanently damage the blood vessel walls.
In order to have the heart function properly and reduce the pulmonary hypertension, the VSD needs to be closed. VSD closure is usually performed by sewing a patch over the hole to close it completely. Eventually the normal heart lining tissue grows to cover the patch and it becomes a permanent part of the heart. This option requires open-heart surgery.
A second option for closing the VSD involves "plugging" the hole with a special device through a procedure in the catheterization lab. The procedure is less invasive than open heart surgery, but had never really been tried on someone as tiny as Nathan before. So there were inherent risks involved with this as well.
Talk about being stuck between a rock and a hard place and a fire breathing dragon!
If we did nothing, Nathan's heart would sooner or later over work itself and eventually stop.
Or we could subject him to the rigors and risks of open heart surgery.
Or we could try a new procedure that has a small proven success rate, but absolutely zero results (good or bad) for someone Nathan's size.
So we were again left with an extremely important decision to make regarding Nathan's life.
Saturday, November 21, 2009
As each day went by, Nathan continued to make slow, but forward, progress. But up until this point, it had never really crossed either of our minds to ask to hold Nathan. With ECMO and the silo and and everything else, it's sad to say that holding Nathan wasn't even a passing thought.
That all changed on the night of October 10th, exactly 5 weeks since Nathan was born.
From the second or third week after Nathan was born, we had tried the best we could to live as much of a normal life as we could. Thomas tried to work normal shifts (there were still bills to pay) and Bekah would spend as much of the day as she could with Nathan. Then at night we would return home, sleep, and do it all again the next day.
The longer Nathan was in the hospital, the better we came to known the nurses and doctors responsible for Nathan's care, especially his primary care nurses, those nurses who were assigned to Nathan whenever they were on.
On the night of Wednesday, October 5th, Thomas was working late while Bekah was with Nathan at the hospital. That night, one of Nathan's primary care nurses, Ashlee, happened to be assigned to care for Nathan. As Ashlee came on duty, she asked Bekah is she had had the opportunity of holding Nathan yet. Sadly, Bekah reported that she had not.
Then, most unexpectedly, Ashlee asked Bekah if she'd like to. Was she serious? Really? Do you mean it? Of course!
Bekah called Thomas with the good news, which prompted him to immediately leave work and head up to the hospital. Bekah patiently waited for him to arrive before holding Nathan. Since we didn't know how Nathan would react to being held, there was no guarantee that we would both get the opportunity. So it was decided that Bekah would go first and if that went well, then Thomas would also have a chance.
Now, holding Nathan was not an easy task. You couldn't just pick him up and cradle him in your arms. Because he was still on the ventilator, it was considerably trickier than that.
After Bekah had comfortably positioned herself in a rocking chair, Ashlee called for the Respiratory Technician to come and help transfer Nathan to her. The RT held the ventilator tube in place while Ashlee gently picked up Nathan. In tandem, they moved over to Bekah and gently placed Nathan in her arms.
And both Nathan and Bekah loved it! Because of the ventilator tubes, Bekah had to remain quite still. And so she did -- for nearly an hour! -- enjoying the first real mother-son bonding time they had ever had.
But after an hour, Thomas was nearly begging to have a turn. So the process with Ashlee and the RT was repeated with Thomas taking Bekah's place in the rocking chair. He also doted on Nathan for nearly an hour with some much needed father-son time.
And even though we had to sit there nearly motionless while holding Nathan, for each of us the hour with Nathan seemed like no time at all. It was the best hour we'd spent in more than a few weeks.
Now that Nathan was off ECMO, the doctors could focus on getting all his insides back inside.
Every couple of days or so, a surgeon would come in to Nathan's room and perform a "reduction" on Nathan's silo.
In other words, the surgeon would basically "squish" a portion of Nathan's guts back into his abdomen and then sew off the silo in order to prevent them from working their way back out.
They would then give him 2-3 days to rest and recover from the reduction. I'm sure you can imagine how awkward and painful it would be.
The whole process took about 2 1/2 weeks to get everything back inside. When they were finally able to get everything back inside, Dr. Scaife was finally able to close Nathan's wound.
For the first couple of days, it was red and very "angry looking." But Nathan's body responded very well once everything was finally inside and it began to heal very quickly. By the end of the month, they were also able to take out his chest tube, which was in to help drain fluid and blood that had been accumulating in his chest.
And so we came to then end of September. Nathan was not quite a month old. He had made it through 4 surgeries, including ECMO and he had miraculously gone nearly 20 days with a gaping wound that never got infected.
It was a relief to have made it through the month, but we knew that there was still a long road ahead of us still. We just didn't know how long -- or how emotionally excruciating it would be.
Friday, November 20, 2009
As Nathan passed Day 7 on ECMO, the doctor's words about the 14-day "safe window" ran through our minds many times a day. While ECMO itself is very dangerous, the odds of survival decrease greatly after 14 days. So having Nathan pass into the second week lit an urgent little fire under us.
And as if that wasn't urgent enough, Nathan still had the open wound where the silo was and it continued to bleed daily requiring daily transfusions.
So each day was critical -- HIGHLY critical. But, fortunately for us, we didn't realize just how critical his situation actually was. Really, only now as we discuss and write this does the entire criticalness of the situation actually hit us. Nathan truly was watched over and blessed with Divine protection during this time.
One of the difficult things about ECMO is that there is no prognosticating when it comes to trying to figure out when a patient is ready to come off. No one can tell you, "Well, if things continue like they are he should be ready by such-and-such day." It's really a day-by-day, hour-by-hour wait.
On Day 9, there was finally talk about "trialing" Nathan off ECMO to see how he would do. To trial someone off ECMO, the machine is turned off and the patient is given the opportunity to circulate and oxygenate their own blood. The length of the trial is determined by how well the patient does. The goal is to have them make it an hour. If they can make it an hour, they are usually ready to come off.
As the morning went on, there became more talk of trialing Nathan off and it looked as if it was going to happen sometime that afternoon.
While the family was off to lunch, the medical team "secretly" trialed Nathan off without any of us knowing.
When Bekah and the grandmas returned from lunch, everyone was surprised by the news that the trial had already taken place -- and Nathan had passed!!!!!
That evening, during a 2-hour operation, Nathan was taken off ECMO. It was both relieving and exhilerating. But most importantly, it was a giant step forward for Nathan.
With ECMO now behind us, we could now focus on other aspects of Nathan's health.
Thursday, November 19, 2009
As we mentioned in the previous post, when Dr. Scaife performed Nathan's hernia repair, he discovered that all of Nathan's insides that he had taken out of his chest (liver, stomach, intestines) didn't fit into his abdomen. Since they had never been in there in the first place, his abdomen hadn't grown to fit them.
As a result, Dr. Scaife temporarily housed a portion of Nathan's "guts" in a surgical silo, a polypropylene mesh covered on both sides with a sterile transparent adhesive film that is constructed right there in the operating room. The silo is sterile, soft, flexible, sturdy, internally smooth, provides a reasonable barrier, and allows visibility of the bowel. The silo is inserted to an open wound in the patient's abdomen and "reduced" as the patient tolerates. The patient is also given a large number of antibiotics to prevent infection since the silo is in an open wound.
However, because Nathan was still on ECMO, the silo posed a another potentially dangerous problem in addition to possible infection:
Patients on ECMO are given blood thinners to help prevent the ECMO machine from clotting. However, the blood thinners also prevented Nathan's wound from clotting, meaning that it was constantly bleeding. A a result, Nathan's silo was heavily bandaged with gauze. The gauze was replaced as needed as it became saturated with blood. He also received regular blood transfusions to replace the blood he was losing.
But with all the gauze, there were times that Nathan's tummy looked like a giant snow cone. Hence, we called him our Snow Cone Belly Baby while we waited for the day he would come off the ECMO.
**For those brave souls, you can view pictures of the uncovered silo, by clicking here. But I caution you, they are NOT for the faint of heart or stomach!
Sunday, November 8, 2009
On the morning of Monday, September 10th, I received a phone call from the NICU letting me know that that they wanted to go ahead with Nathan's hernia repair surgery that afternoon and needed consent from us to proceed. I gave my consent and let them know that we were on our way and would be there within an hour.
The excitement of the moment was so intense. This was such an important event. There was no way that Nathan could start getting better without this surgery. We called everyone we could think of to let them know that this was the day.
As we would come to learn though, emergencies are the norm at Primary Children's and Nathan's surgery got bumped until the evening while the surgeon worked on other patients. Thankfully, that gave us the opportunity to have a friend come and assist in giving Nathan a blessing before the surgery.
By late afternoon/early evening, everything and everyone was ready to go. Because of the ECMO and the oscillator, Nathan was unable to be transported to the Operating Room. So they brought the OR to Nathan. They sterilized his room and closed the door to anyone not needed in the room.
Bekah, myself, and our mothers hung out in the waiting room and played games to try and keep our minds off of the surgery.
More than 2 hours into the surgery, one of the attendants came out to give us an update. It turned out that Nathan's hernia was worse than they had expected. Our hearts sunk into our stomachs at that news. She explained that Nathan basically had no left side of his diaphragm at all and that Dr. Scaife was working hard to repair it. It was likely to be another hour or so and he would be out to give us more details.
Frankly, we could have done without the update! It made it hard to focus on anything else!
Another hour or so later, we received another update. The procedure had gone well, but Dr. Scaife was having troubles re-inserting all of Nathan's "guts" back into his abdomen and Dr. Scaife was trying to decide what to do next. He would be out as soon as he was done to give us the final update.
At last--close to 4 hours after the surgery had started--Dr Scaife came out and explained the surgery to us. To repair the hernia, he had to cut away part of Nathan's oblique muscle, fold it over, and use that as the new diaphragm.
And, as it turned out, since there wasn't much in there while Nathan was in utero, his abdomen had not grown to accomodate everything that needed to be in there. As a result, he was unable to close Nathan's incision. Instead, he had temporarily housed a part of Nathan's insides inside a "silo" and every couple of days or so they would work to reduce the silo by "squishing" his insides back inside his body.
All of this news was extremely weird to us. Since know one had told us differently, both of us were more or less expecting the doctor to try and place everything back where it was supposed to be. So when we found out that everything was basically just in there "wherever it would fit," it threw us for quite a loop. In retrospect, we now realize of course how difficult (if not impossible) it would be to wind and layer the intestines and try to actually put things together "the way they're supposed to be."
After hearing the report, I asked what his overall prognosis was. His response was that Nathan was "stable, but critical." Very somberly he told us that even though the surgery was successful, because he was still on ECMO it presented problems that made his condition still serious.
We thanked him for his work and once he had left the waiting room, we gathered for a prayer and gave thanks to Heavenly Father for the successful surgery and prayed that He would continue to watch over Nathan in his critical condition.
We spent what time we could with Nathan over the next few days.
Bekah was still recovering and had to split Nathan time between his two grandmas.
I tried as best I could to balance work and being at the hospital.
When we were able to be with Nathan at the hospital, it was hard not to feel helpless and in the way.
The ECMO machine took up the entire right side of Nathan's bed area. The oscillator and nitric gas took up the entire foot area of the bed. There were also two medicine pump poles that were usually squeezed in somewhere. In addition, Nathan had two full-time nurses -- one to care for him and one to monitor the ECMO macine for problems like clots.
That left us a small (for 2 people) area on the left side of the bed where we could sit and be with Nathan. Bekah would sing to him. I would read to him. Mostly we would just be there and tell him that we loved him.
Nathan would just lay there. The monitors would beep frequently. And sometimes the nurses would ask us to move for a few minutes so the could give meds, change a diaper, check his vitals, etc.
And then each night we'd drive 45 miles back home so we could rest and do it all again the next day.
Thursday, October 15, 2009
It was the first time we had ever seen him from close up. It was such a sad sight.
Nathan was hooked up to the ECMO machine. Two really big tubes were were surgically inserted into his heart through the right side of his neck. Due to the sensitivity of the tubes and their position, Nathan had to been on a medicine that completely paralyzed him.
Additionally, he was also on a high oscillating ventilator that provided him with over 600 breaths per minute.
He was also hooked up to number of monitors that kept track of his heart rate, his blood pressure, and the amount of oxygen in his blood in two different places.
So Nathan just laid there. Motionless. With goop on his eyes. And unexpected to us, he was very puffy. Apparently, one of the side effects of being on ECMO is that the baby's body tends to retain a lot of water, making him very swollen.
Because of all the machinery and monitors, we were basically only able to touch his head and his feet...and sometimes a hand.
Because Bekah was still recovering and because there wasn't really very much we could do, we didn't stay very long.
Later that afternoon, I made my way back to back to Nathan's room by myself, just so that I could be alone with him, father and son. My heart ached to see him there. Both of us so helpless.
But then the most amazing thing happened. It was like the sun began to shine directly on my soul. I looked around, but didn't see anything. But I knew that angels were there present in the room that day. And in my heart I knew that Nathan would survive. I just knew it. For the first time during the entire 4-month ordeal, I knew it.
Wednesday, October 14, 2009
After everyone had departed and things settle down, I told Bekah all that had happened with checking Nathan into the hospital and that we were supposed to call at 6:30 to find out more, which by this time was not that far away, but still couldn't come fast enough.
At the appointed hour, I phoned the NICU to find out more, anything really, about Nathan and what the plan was. I was connected with the doctor on staff and she informed me that they were deciding whether or not to put Nathan on ECMO and that she would call me back once they had made the decision.
I hung up the phone and told Bekah that they were deciding whether or not to put Nathan on ECMO. She and I both understood that to mean that Nathan was doing better than expected and would likely not need to be placed on ECMO. We were excited and comforted by that fact and decided to get some sleep until they called back.
Within an hour, the doctor had called back and let us know that they had decided to go ahead and place ECMO and asked for our consent for the procedure. Without hesitation, we readily agreed and went back to sleep.
Sometimes, it's an amazing thing how the mind works. You can easily hear words and assign them a meaning that best fits the scenario you want.
It was over a month after Nathan was born that we "secretly" found out what happened during those fateful 45 minutes between 6:30 and 7:15am.
When the doctor had told us that they were deciding whether or not to put Nathan on ECMO, we assumed that to mean, as mentioned above, that Nathan was doing better than they expected and that ECMO might not be necessary to save his life.
What the doctor actually meant was that Nathan was much more worse off than they expected and they were debating whether or not it would be worth it to put him through the stress of the surgery when, statistically, he wasn't likely to survive.
During those last 45 minutes of discussion, even though medically the likelihood of Nathan surviving was extremely low, the decision was made to go ahead and let the opportunity for a miracle happen.
And that's a decision that we are grateful for every single day.
Sunday, October 11, 2009
We left Labor and delivery and made a brief stop in the waiting room, where both my and Bekah's mothers had been anxiously waiting. We then continued to the elevator, down to the first floor, and out to the skybridge that connects the two hospitals.
The Life Flight team hurried down the crossway. Every moment was critical. Nathan made no movements. No sounds. But the beeping from the monitors seemed to indicate that Nathan was not enjoying the trip.
"He doesn't like the rivots," Andrea, the Life Flight team leader commented to her team members as every few yards the Space Shuttle would "click-clack" over them. It's maybe a 100 yards from one hospital to the other along the skybridge, but for Nathan that morning it probably seemed like a 100 miles.
We reached the other side, entered the building on the 4th floor, and hurriedly continued to the NICU. Once there, I followed Nathan and the team into the closest room, a room that we would later call "The Sickest Baby Room."
Except for 1 nurse (and now us), the room was empty. No other babies. No other staff. No crying. No noise. Just us in a quiet, empty room.
In my head I guess I was expecting "the TV episode" where there are dozens of hospital staff and they are all frantically zig-zagging about trying to get Nathan accommodated. But that wasn't the way.
The quiet was both frightening and reassuring at the same time. They knew we were coming right? They're prepared for us? They know what they're doing? Of course they know what they're doing. Of course they're ready for us.
But what am I supposed to do now? Probably sensing my confusion, a nurse approached me and directed me to the front desk and indicated that he would be able to help me. I signed a few papers, was given a code that we would need to present when we called in to check on Nathan, and a few other items of information.
I was trying my best to listen to everything he was saying, but with an extremely sick baby in the next room, an exhausted wife in the next hospital over, the lack of sleep, and the sheer anxiety of everything, I found it really hard to focus.
A soon as he was done explaining, I finally heard the words I had been waiting to hear: "Do you have any questions?"
"Yes," I replied, "What do I do now?"
At that point, the doctor approached me. "Go back and be with your wife. If you don't hear from us by 6:30, give us a call."
It was 4:30 in the morning. I made the long, lonely walk back to the other hospital, my heart now pulled between 2 places: my wife in one hospital and my son in the other. As I retraced my way back, it was so surreal to think that I was just here a few minutes before chasing the Life Flight team in the other direction. The hallways and skybridge were so quiet. No one else around.
It was going to be a long 2 hours.
Saturday, October 10, 2009
Around 4am, one of the nurses brought in a wheelchair so that I could transport Bekah to the NICU.
As we entered the room, it seemed very small and crowded. There were a couple of other babies, a few nurses, a couple of doctors, and the Life Flight team already in there. We just wanted to see our baby, but it felt like we were intruding or in the way. We found an open space and positioned ourselves as close to Nathan as we could without being in the way. We were right across from him, maybe 5 or 6 feet away.
Nathan just lay there motionless, the ventilator doing his breathing for him. But I couldn't help but notice as we looked across at him, that he just looked so perfect. Inside, his body was so messed up; but outside, he was beautiful. Looking at him, you would never know that he was so sick and clinging to life.
We weren't there very long before the Life Flight team was ready to load him up and transport him across the way to Primary Children's Medical Center. They wheeled in what we affectionately termed "The Space Shuttle" to transport Nathan.
Unexpectedly, the Life Flight team leader asked me if I was LDS. I replied that I was. She then asked if I would like to give my son a blessing before they took him away. Even though I wasn't expecting it, I eagerly accepted the opportunity and moved over next to my son. He was even more perfect up close!
I gently laid my hands on his little head and prayed Heavenly Father would watch over him and that angels would be with him.
After that, they gently loaded him into the Space Shuttle and invited me to accompany them across the way.
Sunday, October 4, 2009
As Nathan struggled to breathe, I watched intently as Dr. Byrne worked quickly to clean Nathan up and tie and cut the cord--all in less than a minute! As soon as she was done, she wrapped Nathan in a soft cloth, handed him to the nurse, who then quickly passed him through the window to another nurse waiting in the NICU. She took Nathan away and then closed the window.
Bekah lay recovering. She hadn't even seen Nathan yet. I sat holding her hand as we waited for word on Nathan.
After a few minutes the window opened: "You baby weighs 6 lbs, 10.5 oz. He's on the ventilator, but they're having trouble getting the IV in." And the window closed again. In all likelihood, it probably wasn't that abrupt, but I'm not that far off either.
They're having trouble getting the IV in?!?! What does that mean?
We continued to wait, hoping each minute that the window would open and more news would come through it. Once or twice I even thought about opening the window myself to ask questions or to see what was going on. But I thought better of it, surmising that they needed to focus on Nathan and not on me, no matter how badly I wanted to know what was going on on the other side of the window.
Finally, the nurse opened the window again and let us know that they needed to transfer our son to Primary Children's and had called for the Life Flight team for transport. We would, however, get to see him before they took him over.
Saturday, October 3, 2009
The words "We're having a baby!" jolted me out of my peaceful slumber.
"We're having a baby?!?!?!"
What time was it? 4am? 5am? 6am? I looked up to find the clock and saw the window to the NICU open. We really were having a baby! I found the clock. It read 1:30am. It was only 1:30am? That meant I had been asleep for just over an hour. I felt like I had been asleep for at least 4 or 5 hours.
But now here it was. Nathan was going to be born any time now...
Dr. Byrne entered the room around 2am. Seeing her was both a relief and a shock. Earlier in the evening, when things were progressing very slowly, she had informed us that she would be heading home for a little bit in order to get some sleep. She also let us know that she only lived about 5 minutes away, so that when it was time, she could get here quickly.
However, during the interim, a large thunderstorm had passed through the Salt Lake area. The storm caused a power outage in a number of parts of the city. And Dr. Byrne's house happened to be in one of the areas where the power had gone out. As a result, she couldn't open her garage door, meaning that her car was stuck in her garage! As a precaution, she had called one of her colleagues to be ready to deliver, just in case.
Of course, we weren't aware of all that was going on outside or even that Dr. Byrne's car was stuck in her garage. We didn't find that out until 2 days later! The only thing we new was that Dr. Byrne might not be able to make it back. As Providence would have it, though, she was able to make it back in time!
Finally, around 2:37am on Wednesday, September 5, 2007, Nathan made his grand entrance into the world.
Friday, October 2, 2009
After our somewhat restless night's sleep, the nurses came in and hooked Bekah up to a pitocin IV around 9am. In my head, I was thinking something along the lines of "OK...we'll be in labor for a few hours and sometime this afternoon our son will be born." In reality, it didn't quite work out that way.
Labor was really, really, really, REALLY slow. And for Bekah it was also really, really, really, REALLY painful. Since it was decided to induce labor a week and a half earlier than our due date, Bekah's body was not ready for Nathan to be born. So we were in for a long day. We played games, watched movies, read books, went on walks around the unit, and did any other mundane activity we could find to pass the time.
Bekah was a real trooper during the whole day. The Lamaze classes we took were really coming in handy. Bekah was doing her best to breathe and try and stay relaxed. I watched the "intensity meter" every now and then to see how things were progressing. There were times when contractions were coming right on top of each other. And she did an amazing job handling them with little, if any, complaints.
After over 13 hours with very little progress, Bekah was extremely exhausted. At that point, we opted for some pharmaceutical assistance to help speed up the process. Around midnight, we had come to the conclusion that it was probably still going to take a few more hours before Nathan was going to be born. So we decided to try and get some sleep.
The drugs were beginning to take effect, and it looked like Bekah was going to be able to get some rest. 15+ hours of labor had taken its toll. Lucky for me, the nurses had brought me in a roll-away bed. It was a much more welcome site than the fold-out chair I had the night before. From the point we were at, I was expecting business to pick up again around 5 or 6am.
I couldn't tell if Bekah was asleep or not, but she looked as relaxed and peaceful as I had seen her since before we started. With that, I rolled over and fell asleep.
Wednesday, September 30, 2009
We arrived on time, but to our surprise they weren't expecting us! Which was really odd because supposedly everything had been arranged a week before.
Finally, after checking whatever it is they needed to check or speaking to whomever they needed to speak to, they finally admitted us. However, they put us in the wrong room!
I mentioned to the nurse that we were a high risk pregnancy and that we were supposed to be in a room with a window directly to the NICU and that I didn't see a window in the room we happened to be in. She said she would check on it. And I thought, "Seriously, did you not know we were coming?"
Eventually, they got everything straightened out and we were put into the correct room.
We decided that it would probably be a good idea if we went to bed kind of early and got some sleep since we'd be having a baby in the morning!
One of the nurses came in and hooked Bekah up to some monitors for the night. I asked her where I was supposed to spend the night. I was shown a chair. A chair? A chair? Seeing the bewilderment on my face, the nurse informed me that the chair folded out into a bed.
After a few minutes trying to figure out how the chair magically transformed into a bed, I finally got it! It was no bigger than a cot! And A LOT less comfortable! Midway through the night I got up and grabbed another one of the chair-beds and laid it out side-by-side with the first. Then I grabbed a few pillows and stuffed them in between the two beds. Better, but not much.
Bekah had her own difficulties sleeping as well. All night her oxygen monitor kept going off. I don't know what setting they had it on, but apparently she wasn't getting as much oxygen as the nurses thought she should be.
Every 5-10 minutes -- BEEEEEEEP! BEEEEEEEEP! BEEEEEEEP!-- and Bekah would take a deep breath and try to get the stupid thing to stop beeping. Since no one was coming in to check on her, I figured it must not be that big of a deal and told her to either take the monitor off or to just ignore it. She decided to do the best she could to ignore it.
The morning didn't come as quickly as we had wanted, but it did come. And our idea of getting a good night's sleep had gone with the night.
Today was the day! Were we ready?
Tuesday, September 29, 2009
They chose to induce early in order to ensure that Nathan would be born at the University of Utah Hospital, where they would be prepared with all of the necessary equipment that he would need to save his life once he was born.
Also, we were also told in no uncertain terms that if Bekah happened to go into labor before that time, we were to go to the nearest hospital and inform them we were an extremely high risk pregnancy, that our baby could only be born at University Hospital, and that we needed immediate transport there.
Talk about another wake up call! Nathan had to be born at University Hospital. There was no other option.
Thankfully, the last month was entirely uneventful. Bekah made weekly trips to Salt Lake to meet with Dr. Byrne to monitor her health and to check Nathan's growth.
Nathan grew steadily over the last month, but was still what I would have considered "small" for a baby--they estimated him around 6 lbs. In my mind, the bigger he was before birth, the better his chances would be after being born.
But whatever his chances were, we were about to find out...
Sunday, September 20, 2009
I have to go back to the beginning of the summer for myself. When the first sonographer told us that our son had a problem and the doctor told us that it looked like our boy had a congenital diaphragmatic hernia, but that they didn't know how bad it was, and they were sending us to a specialist, time sort of stopped. All of my emotions sort of went on hold, in an agony of suspense, until we found out more. I tried not to think about it too much because there was nothing we could do. Then when we found out it was so bad it was really hard not to absolutely break down. It was like all of your worst fears that you didn't even know you had suddenly came true. It was as horrible as a nightmare, without any of the relief of waking up, because it was real.
As the summer went on and we learned more about Nathan's specific condition, and as we learned more about what would happen to and for him, and as we decided to move forward with faith, my mind and emotions calmed down. We were doing all we could and learning all we could, and while Nathan was still inside me he was safe. Nothing could hurt him, so we just prayed and both Nathan, and my heart responded.
But as summer drew to a close and Nathan's due date approached, I found myself in emotional crisis again. All of my doubts and fears began to resurface. Very soon Nathan would no longer be safe. Soon doing everything we could do might not be enough, and anything I could actually do would be minimal at best. I was frightened and worried for my baby. I wanted him to live so badly, but I had no control over it at all. Every time I actually thought about Nathan dying my heart broke. I tried to build a connection with him. I sat in the rocking chair we had bought and I tried singing to him and I could never get through more than a verse of any song without crying; absolutely sobbing. My prayers also became more earnest. They had always been sincere, but it was harder to say calm, faithful prayers; they were more desperate pleadings.
I thought I had dealt with all of these emotions earlier in the summer, but they all came back as we faced the unknown again. I had to relearn the faith that we'd decided to exercise. I had to relearn, just a few months later, how to pray with all my heart for my son to survive, while knowing that he might not, and trust that somehow the Lord could help me accept whatever happened.
Wednesday, September 16, 2009
Ironically, the bad part was having so much time. The meeting with Dr. Yoder weighed heavily on my mind over the next few days, especially the part where he discussed "compassionate care."
Since the day we had decided to move forward believing that our son would survive this whole ordeal, it was somewhat of an unspoken rule around the house that you don't bring up the "What ifs," even though I know we both thought about them, probably more than we wanted to or would admit to at the time, as if that would be showing a lack of faith in God and His healing power.
Relatively soon our son would be born. This was closer and closer to reality. How long would he live? Minutes? Hours? Days? Would there be time for me to hold him? Or would his mom be the only one to experience that? I couldn't take that away from her. Would he know I was his dad? Would he know how much I loved him?
If he doesn't make it, how do you arrange for a funeral? Where would we bury him? How do you deal with all that?
All the questions I had avoided seriously asking myself and many more now flooded my head.
What do you do? I did the only thing I could do --- I prayed.
But what do you say?
I had prayed for Nathan countless times in the last two months. But now it was somehow different. I don't know how to explain it very well, but it was just different now.
Before, even though Nathan was sick and we had known all along that there existed the possibility that he might not make it, that possibility was now more of a blatant reality. The abstract and intangible was now way more real and tangible.
How do you plead to you Heavenly Father for your child's life? What do you say? Do you foolishly think you can barter for his life? Does your child "deserve" to live more than any other child? Are you more privileged or special than someone who has lost a child that you think God "owes you?"
I didn't know what to say to Him. But I knew He understood my heart. I knew He understood how much I loved my son. I knew how much He loved His Son too. So I couldn't say to Him that Nathan deserved to live, but I could say that if he did, Bekah and I would teach him to be a good and righteous man, to love God and his fellow man, and to serve them both. That was all I had to offer. And if in His infinite and perfect mercy and wisdom that meant that Nathan got to live, then we would do our best to keep that promise. But if not, then I prayed His mercy would be enough to keep my heart soft and curb any bitterness or resentment that I might have if He decided that He needed Nathan on the other side of the veil more than we He needed him here with us.
Tuesday, September 15, 2009
We first met with Dr. Jan Byrne, director of the Fetal Therapy Program at the University of Utah Hospital. As of August 1, she would be taking over pre-natal care of our son. That meant that Bekah would now have weekly 45-minute trips to Salt Lake for the last 5 weeks of her pregnancy.
We then met with Dr. Bradley Yoder, professor of pediatrics at the U of U School of Medicine and Associate Director of the Newborn Intensive Care Unit at Primary Children's Medical Center. Dr. Yoder explained the care that Nathan would receive once he was born and informed us what they monitor and the statistics that they follow to determine how or if the child is progressing. From information gathered from CDH babies from around the country, they had a pretty good idea of the line that marked survival from fatal. But they always do everything they can for babies who fall just under that line "just in case."
And in a very sobering way, he let us know that sometimes, regardless of what they do, they just can't save a child's life. In those situations, what they usually recommend is taking the baby off of all life support systems and providing it with "compassionate care" or in other words holding him in your arms and loving him until he gently passes from this life into the next. Dr. Yoder then gave us a brief tour of the NICU at Primary Children's.
Finally, we topped the day off with the fetal MRI. I wasn't allowed to accompany Bekah into the MRI room, so I had a front row seat in the waiting room while she spent about an hour in the MRI. They took lots of images in order to get the best picture possible of just how severe Nathan's hernia was. The MRI confirmed the severity of the hernia and also that Nathan had a floating stomach (sometimes in the chest, sometimes in the abdomen).
And that was it. Everyone was supposed to be prepared now. The doctors had all the information they could get. We had been briefed as best we could considering the circumstances.
We met with Dr. Ball one last time on August 1. Now that all of the pre-natal evaluations had been completed and we had met with everyone we needed to consult with, Dr. Ball was handing care over to Dr. Byrne. It was a bittersweet moment. Dr. Ball had done so much for us to get us ready for Nathan to be born. It was he who had arranged for all of the appointments and meetings with specialists to be made. So while it was nice to be "graduating" from his care, his help and assistance had proven invaluable in guiding us along the beginning of this journey we didn't know we would have to take.
And for that, we will always be grateful.
Monday, September 14, 2009
We were relieved that the situation wasn't worse, but somewhat disappointed that there wasn't a big improvement like the last time. Nonetheless, we were extremely grateful for the position we were in.
In addition, Dr. Ball followed-up on our meetings with Dr. Puchalski and Dr. Scaife. He also let us know that we still needed to have a fetal MRI to get a better and more accurate picture of the hernia than the ultrasound provided. He would have the hospital call us to schedule the appointment.
Additionally, he would also arrange for one of the neonatalogists at Primary Children's to call us and schedule a consult so that we would could tour the NICU and also to know what to expect in terms of Nathan's care after he was born. He would also have the doctor who would be delivering Nathan call us to schedule a meeting and arrange for transfer of the pre-natal care to the University of Utah Hospital where Nathan would be born.
Sunday, September 13, 2009
Dr. Scaife explained the inner workings of a newborn's circulatory system:
Normal hearts pump blood from the right atrium to the right ventricle to the lungs to be oxygenated to the left atrium to the left ventricle and out to the body.
However, in an unborn child, there exists a bypass route that skips the right side portion of the normal route and instead sends the blood to get oxygenated by the placenta.
When the child is born, the bypass closes and generally seals itself within a few days. The baby is then able to oxygenate its own blood through its normal breathing.
If the baby has issues with his or her lungs that prevent it from properly oxygenating its blood (such as would be the case with Nathan), the child's body instinctively searches for another way to do it. Because the bypass has not yet sealed itself, the blood takes the path of least resistance and moves through it as if trying to still get oxygen from the mother.
However, since mom is no longer there, the blood cycles back through the body un-oxygenated. Eventually, the lack of oxygen and the build up of carbon dioxide in the blood becomes fatal. Many children who have this problem are placed on a machine called Extracorporeal Membrane Oxygenation (ECMO).
ECMO is a method for temporarily supporting patients with severe heart and/or lung failure (see above image). The ECMO circuit essentially adds oxygen to the blood and helps the heart pump blood to the body. Basically, it is similar to a heart-lung bypass machine used during open heart surgery but can be used for a longer treatment period. ECMO uses an artificial lung called a membrane. Blood is pumped through this lung by the machine where carbon dioxide is removed and oxygen is added.
Dr. Scaife also explained that 14 days is the longest a baby can generally be on ECMO successfully without increased danger to the child's life.
In addition to explaining ECMO, Dr. Scaife also explained about the surgery our son would need after birth to repair his diaphragm. This surgery generally takes place within a few days of birth to allow the baby some time to stabilize so it can better tolerate the surgery.
His overall prognosis was "worrisome, but not hopeless."
The consult with Dr. Scaife was very informative. It gave us a great idea of what to expect once Nathan was born. His overall prognosis was very sobering, but at the same time it still let us cling to the hope we had of Nathan surviving.
As the doctor was examining Nathan's heart, I began to feel slight, recurring spasms in my belly. After a few of these, I noticed that each time I felt a spasm, the picture on the screen would jump! It didn't take long to put together what was happening: Nathan had the hiccups!
It was the first time I'd felt him have the hiccups, and I had wondered if Nathan could get the hiccups because hiccups are a spasm of the diaphragm and Nathan's wasn't complete. Well, now we know that you do not need a whole diaphragm to get the hiccups! It was really fun for me to be able to both feel the hiccups and see the screen jump at the same time. It added a dimension of happy reality to the pregnancy.
Unfortunately it made it harder for the doctor to see what he needed to see, but he still felt like he had gotten a good look at the important structures and functions of the heart, so it was OK.
Saturday, September 12, 2009
At our second meeting with Dr. Ball, he explained that while the majority of CDH are isolated, additional evaluations are needed to help rule out other birth defects, since they may adversely affect the life of the child. The amnio had ruled out any chromosomal abnormalities, but there were still a few other evaluations that we needed to rule out other problems as well. One of these was a fetal echocardiogram.
Dr. Ball said that he would arrange for this to take place and have the doctor call us to schedule. Within a couple of days, Dr. Michael Puchalski from the
The fetal echo consisted of an ultrasound – a really long ultrasound! Dr. Puchalski spent nearly an hour studying Nathan’s heart – its size, structure, and function.
His verdict? For the most part, our son’s heart was structurally sound. It had all four chambers and was working well. However, there was a hole between the two ventricles (bottom chambers of the heart), but that is not uncommon and they often tend to eventually close themselves. His heart was also slightly displaced into the right side of his chest, but this is also common among CDH babies.
We left the echo considerably upbeat. Nathan’s heart was structurally sound. This was extremely important to his survival after birth. It was also a big relief to us. We knew our prayers were being heard. We knew that there was still a long road ahead of us, but each bit of good news was very reassuring and helped to strengthen our faith.
Friday, September 11, 2009
The two weeks passed both quickly and slowly. We were excited to see if there was any improvement in Nathan's LHR and to get the results back from the amnio.
During the ultrasound, Dr. Ball commented that Nathan's stomach had moved down and out of the chest (good news!) As a result, he was now calculating the LHR to be at 0.9. Simply amazing! In just 2 weeks Nathan's LHR had increased 50%!
Yes, we had been praying hard, but neither of us expected such an increase. It was truly miraculous.
Probably sensing our enthusiasm, Dr. Ball was quick to remind us that Nathan was still on the worse side of so-so, but we knew that God had had a hand in this.
Additionally, we got the results back from the amnio that day. Thankfully, the results of the amnio came back normal. It wasn't until after we had gotten the results back, that we found out that there are a small number of chromosomal defects and syndromes often associated with CDH, some of which are generally fatal.
Thankfully, that wasn’t going to be a bridge we would have to cross.
Soon after deciding to move forward with the hope and faith that our baby was going to be okay, we came to the conclusion that he needed a name. We decided that it would be more real and more personal if we could specifically petition for him by name in our prayers to Heavenly Father for his life and well-being.
But what should his name be?
I have always been a believer that a person’s name goes a long way in defining who they are. So picking a name for our son was of utmost importance to me because of the situation that we were in.
Bekah’s family has “a thing” for Biblical names. Bekah and 4 of her sisters all have names from the Old Testament: Sarah, Miriam, Esther, and Hannah. The fifth sister, Kathryn, received the “family name.” So Bekah was inclined towards a Scriptural name.
Before we knew of Nathan’s condition, I had gone through the Scriptures and picked out a few random (and according to Bekah extremely odd) names in an effort to dissuade her of this tradition (Ziba was my name of choice for a long time). But after knowing of our son’s condition, his name took on a lot of new importance for me.
After some debate, we had narrowed the selection of names down to four. Bekah had nominated James (in honor of her father) and Joshua (Old Testament prophet). I was inclined toward either Jacob (Book of Mormon prophet) or Jonathan (dear and devoted friend of King David from the Old Testament).
Eventually, we settled on Jonathan.
We were impressed by the name Jonathan. Both for who it represented (if you are unfamiliar with the story of Jonathan and David it is more than worth it to read) as well as its meaning, “Jehovah has given” that we discovered by researching its etymology (origin and meaning) as we tried to whittle our list down to “the perfect name.”
However, when we paired the name “Jonathan” with our choice for a middle name, the whole thing just seemed too long. We tried a couple other middle names, but they didn’t seem right either. That’s when the inspiration came.
“What if we name him Nathan?”
As much as we liked the name Jonathan, Nathan just “felt right” to us. It’s the root of the name Jonathan and has the same etymology – “God has given.” If our son was going to be allowed the opportunity to live, then it would be because “God had given” us that blessing.
Yes, Nathan was to be his name.
Sunday, August 30, 2009
We were scheduled to meet with Dr. Ball again in 2 weeks.
As each day and went by, we spent a lot of time praying, talking, hoping, and crying. Knowing that the life of your unborn child is in danger tends to help put a lot of things into perspective for you. But at the same time, it rips and tears at your very soul. Especially when the outlook is not at all very good.
All the things you imagine doing with your child – playing and laughing and watching him grow and learn – have a real possibility of not occurring. Not going to the park, not playing catch, not cheering him on as he wins the state championship, not…well I’m sure you get the picture.
One night I decided to have a talk with my unborn son. And while I was addressing him, I was also talking to myself and to my wife. I don’t remember exactly what I said, but it went something like this:
“Son, I don’t know how much you’re aware of what’s been going on, but you’re not doing so well. The doctors tell us that you’re pretty sick. Quite sick actually. Sick enough to put you life in danger.
“As you body was developing, for some reason it just decided to skip the part that tells it to completely make your diaphragm. As a result, you have a hole there. The hole has allowed your stomach, liver, and intestines to move up into your chest.
“You likely don’t notice it now. It shouldn’t cause you any pain. It won’t affect how you grow over the next couple of months. But when you’re born, it can cause a lot of problems then. It’s not your fault. It’s not my fault. It’s not your mom’s fault. It’s no one’s fault. It’s just the nature of the world that we live in.
“Son, don’t think that because you’re sick that we love you any less. We pray for you every night and every morning and many, many times throughout the day. We pray that Heavenly Father will grant us the opportunity to raise you and pray that we will be the type of parents that you will need to teach you how to be a good and righteous person.
“We will do everything we can do for you, Son, and have faith in the rest.”
After a few minutes to recompose ourselves, we spoke verbally for the first time many thoughts and feelings that we had each had in our hearts and minds, but were to afraid to say out loud. Mostly, how were we going to proceed from here?
We decided that we HAD TO go forward believing that our baby boy was going to survive. It was necessary for our faith, well-being, and sanity to go forward believing and hoping that things were going to work out the way we were hoping and praying that they would, even though we knew that there was a very real possibility that they might not.