Facing the Other Side of the Scalpel

While Ian was being resuscitated, I spoke to the neonatology fellow who showed me his impressive abdominal x-ray showing the free air. He told me he was also the one who placed all the lines, intubated Ian, and started the boluses. Ian ended up getting around 200 cc/kg of normal saline. He just happened to be walking by Ian as he arrived when he noticed that he looked very bad. The surgery team who was supposed to see him was busy with another sick patient at that time. So if the NICU fellow wasn’t there at that time, Ian could have been hypotensive for much longer, risking ischemia to the brain. It wasn’t until later that I realized that he literally saved Ian’s life. It wasn’t until days later that I was able to thank him. “That’s what we’re here for,” was his reply. I will forever be grateful to him. Oh, he also happened to be Filipino.

The anesthesiology team came up and I spoke with the resident briefly. I’m sure he was very capable, but his appearance looked sloppy and I couldn’t resist presuming that it was also a reflection of his medical care. It was at that moment that I wished I were back in Loma Linda where people I knew and trusted would be taking care of my son. But I thought, God sent Ian here for a reason.

Just before they were about to take Ian down to the OR, Aileen arrived with the rest of her family. I must have looked very worried because Aileen immediately grabbed me and hugged me. We followed the peds surgery fellow down to the OR and she told us to wait in the surgery waiting room. My parents arrived shortly after and we were the only ones in the waiting room that evening. I got a call from Israel and Judy and they said they were on their way down from the UP (even though Judy was 35 weeks pregnant). My brother, Justin, called and he was carless and stuck in Ann Arbor. He desperately wanted to come to the hospital too, but did not have a way to get there. I just asked him to pray for his little nephew.

In the waiting room, our family got down on our knees and prayed. I was hoping that floods of Bible promises would come to mind at this time, but to be honest, my mind was numb. I felt like I was grasping for some handholds but could not find any. But before I started to fall, my family reminded me of the promises found in Psalm 121 and James 1:2-4.

As we waited for the case to finish, I looked at the pictures of Ian that we had taken before he had gotten sick. They gave me hope that one day, Ian would be restored to health again. But in the back of my mind, I wondered if he would ever be the same again. I was hoping that the surgeons would find a simple intestinal atresia, resect it and put him back together. But I also feared that he may have malrotation and volvulus which would require all of his intestines to be resected and necessitate the need for long term TPN (IV nutrition).

After about two hours, the surgeon walked into the waiting room. He was tall, young, and had a pleasant smile. It gave me hope that what he found was not too bad. But after introductions were made, he sat us down and said, “The surgery went well, but he’s gonna be sick for quite a long time.” My heart sank. “It’d be easiest if I drew you a picture of what is going on,” he said. At that moment, I thought for sure he was going to draw the picture of malrotation that I’ve seen so many times in my surgery textbooks. But instead, he said the upper intestines looked normal. I was so relieved! However, he found hard meconium obstructing the distal ileum with the perforation just proximal to the meconium plug. Proximal to the obstruction was what he described as thickened, dilated, and angry looking bowel which he left in and hoped would heal in time. The colon was small and it appeared that nothing really ever made it that far in the intestinal tract as everything was blocked by the meconium.

He was able to resect a small portion of the perforated bowel and due to the inflammation and infection from the perforation, he had to create an ileostomy, which he said he was planning on taking down in 6 to 8 weeks after the inflammation and scar tissue had cleared. They also placed a central line so that Ian could start getting TPN. That meant they were not expecting Ian to be eating anytime soon. My heart sank again.

But the other issue that needed to be addressed was why the meconium was so thick in the first place. This was a case of meconium ileus, which he had explained was associated with cystic fibrosis. My heart sank even lower. Although CF is extremely rare in Asians, he was going to send a genetic panel to test Ian for the disease. I had just watched a TV show about a man whose children had CF back in the 1970s and none of them lived past 40 years old. I pictured Aileen and I doing vigorous CPT, pounding on Ian’s back, in the middle of the night to try to break up the thick secretions in his lungs. I couldn’t bear to see Aileen or Ian having to go through that.

The surgeon gave us the picture that he drew and scribbled his phone number on it. He said we could go up to see Ian in a few minutes and wished us goodnight. The news he brought us was not what any of us had expected. But he left us with a sense of hope, and we all clung to that piece of hope as tightly as we could. Although the miracle I was praying for did not transpire that night, I was left with a sense that Ian was in good hands. But another miracle was taking place. I looked around me and felt a closeness to my family that I’ve never felt before. It felt like Ian, Aileen, and I were in the middle of a giant vacuum, but God was pulling in all our family and friends towards us like never before.

We went up to see Ian. He looked peaceful, thanks to the fentanyl, morphine and versed. But he looked so fragile. His life depended on the ventilator he was connected to and the numerous drips hanging beside him. But he was alive. I saw the tiny ostomies on his belly and knew that this would be a long road before we would experience any semblance of a “normal” life. I think we were all too tired to cry. We entrusted Ian to the care of the NICU nurses and physicians, and we drove home to try to get some rest.

But there was no rest for Aileen, who had just delivered Ian less that two days earlier and was only able to sleep 4 hours in the last three days. She had to start pumping breast milk every three hours. But the combination of the adrenaline and the maternal drive kept her going. She has pumped diligently with the hope that one day, Ian would be able to eat. I don’t know how she does it, but a mother’s love is truly an amazing thing. Just thinking about it moves me to tears.

The Fall from Grace to Despair

With the long anticipated arrival of Ian, we experienced joy and a capacity to love that we never thought could be possible. But still lingering in the back of our minds was the abnormal echogenic bowel and the possibility that Ian could have something wrong with his intestines. It was a fear that we would have happily dismissed if Ian was able to pass meconium.

Aileen started feeding him and our little guy latched on almost immediately. However, he would suck for a few minutes and then stop. We were surprised that he was not hungrier, but we assumed that he just really loved to sleep. After feeding attempts, when we would burp him, it looked like he would spit up but immediately swallow it again. I thought it was strange, but didn’t realize until later why he learned to do that. We also thought it was strange that he never really cried. Once in a while, we would hear him whimpering softly. But it seemed like he never wanted to bother anybody. Maybe he was telling us, “Mommy, Daddy, don’t worry about me. I’ll be okay.”

One day after he was born, there was still no meconium and Aileen started noticing that Ian’s belly was getting more distended. I thought it was gas so I started massaging his belly to help move things along. But as I felt his abdomen, I could feel hard loops of bowel. It was at that point that our worst fears were becoming a reality. As much as we wanted to attribute all this to gas or constipation, we reluctantly asked the pediatrician on call to order an x-ray. The x-ray revealed what we have been trying to wish away the past 24 hours—our newborn baby had a bowel obstruction.

Ian was taken away from our room and transferred to the neonatal intensive care unit (NICU). The pediatric surgeon confirmed that he would need surgery, but recommended that he be transferred to either Mott at the University of Michigan or the Children’s Hospital of Michigan (CHM) in Detroit. Due to insurance reasons, he was set up for transfer to the Children’s Hospital in Detroit on Saturday afternoon. We preferred that he stay close by in Ann Arbor but we didn’t want to have to deal with the insurance company if they refused to pay for his care at Mott. As he was leaving, he never cried, he was as alert as ever just looking around and taking in this new world he’s become a part of. We never knew how quickly he would become a part of so many people’s lives.

I had assumed that upon transfer, the pediatric surgeons at CHM would evaluate him and schedule him for surgery on Sunday morning. So I decided to let Aileen rest at home while I went to CHM with Aileen’s dad (who is also a surgeon) to speak with the surgical team and find out their plan. My brother-in-law Israel called and I told him that Ian needed surgery. He asked if I wanted them to drive down from the UP. I told him not to. I was hoping it would be a simple surgery and Ian would be home soon. He told me they would be praying for which I thanked them.

However, while on I-94 en route to CHM, I received a call from Aileen. She was sobbing and told me that soon after his arrival at CHM, Ian had perforated his bowels. He became hypotensive and stopped breathing. They had to intubate him, start dopamine, and planned to take him to surgery as soon as he was resuscitated. My first thought was to stay calm and not to cry since I was driving 80 mph. But when I told my father-in-law what was going on, it was too hard to hold back the tears. Soon afterward, Steve Conway and Dr. Pipim called me on my cell. I don’t know how they found out so quickly, but they assured me that many were already praying for little Ian. It was comforting to hear, but there is truly very little anyone can say to reassure a parent in a situation like this.

My dreams of playing sports with Ian and helping him with schoolwork felt like they were being snatched away as I was trying to push away thoughts of funeral preparations. I thought, “How could a God of love give us such a precious gift and then take it away so suddenly?”

I arrived at the NICU to find the team scurrying to get Ian ready for surgery. When I saw my son in the bed, it was not the Ian I had left just a few hours before. His alert eyes were now glazed over. He was on a ventilator. He was pale and his abdomen was distended with intravenous lines in his umbilicus. I just looked at his ghostly figure but felt so useless. All I could do was entrust my son’s life to the surgeons and to God. I felt like I had already failed on my second day as a father.

24

Unlike Jack Bauer, the twenty-four hours following Ian’s birth were the best Aileen and I have ever experienced. Most people (especially moms) told us to keep the baby in the nursery the first couple nights so that we could sleep. But we just couldn’t let him leave our sight. I felt like a little kid who just got the best Christmas present ever and not able to put it down for weeks! All I wanted to do was hold Ian, watch him sleep, look at his facial expressions and wonder what he must be thinking. One thing was for sure, he loved to sleep! We held him and looked at every body part to see what exactly mommy and daddy contributed to this beautiful, amazing creation of God.

With the abnormal ultrasound results early in the pregnancy, we were worried that he may have an ano-rectal malformation. But one of the first things we checked was whether he had a poop shoot. And we were so relieved to see that his was there! Now we just had to wait for something to come out…

The first thing that we noticed about Ian was of course his hair! He can thank Aileen for that. After his first bath by the nurses, his hair and skin felt so soft. And his smell was the most incredible thing ever. I could have just smelled him all day long!

With regards to his other body parts, Aileen definitely gave him her ears, nose and feet. I can take credit for his lips, hands, and butt. But his eyes and chin look like they came from both of us. His eyes are the most beautiful things. When he opens them, they have the appearance both of innocence and profound wisdom. People may think he looks older because of his hair, but I would have to disagree. There is something special about his eyes. Something I just can’t wait to find out. What are you going to teach us, little Ian?

The following day was filled with more holding, some attempts at feeding, and lots and lots of pictures! Family and friends came to visit bearing flowers, balloons and golf balls (thank you harabugee, harmunee and Uncle Justin!).

Thank you Lola, Lolo, Auntie Aimee and Uncle Benny for being there with us through it all! Ian was so blessed to have such a warm welcoming party waiting for him when he arrived.

Labor and Delivery

I awoke Thursday morning, two days before her due date, to find myself alone in bed. I sat up to find Aileen sitting in the chair, staring at the clock. I immediately knew.

“How many minutes?” I asked.

“Five or six,” she replied.

“Since when?” I asked.

“Midnight,” she sighed.

It had been too uncomfortable to lay down with the contractions, so she had spent the last seven hours sitting in the chair. She had not gotten any sleep. The minute her head nodded off during the night, she was rudely awakened by another contraction.

She bared the birth pains as best as she could for another ten hours before she couldn’t take it any longer. “Let’s go,” she said. So I grabbed the suitcase, my coat, and the keys and were on our way.

In triage, Aileen was already four centimeters dilated and was admitted to labor and delivery at St. Joseph Mercy Hospital in Ann Arbor. She was visibly uncomfortable with each contraction, but when the epidural was placed, she was a new person. Those of you who urged her to get the epidural, you were right!

At midnight, she was ten centimeters dilated and started to push. After 2 hours and 44 minutes of pushing, a head full of hair popped through. The umbilical cord was wrapped around his head but was quickly removed by the doctor. Then the rest of his body slid right out and he immediately started to cry. I don’t quite remember what happened next, but the baby was placed on Aileen’s belly and her first words were, “Ooooooohhhhh, ooooohhhhhh, baby…look at you.” Like a good pediatrician, she vigorously dried him off. The OB presented me with the cord and scissors which I clumsily cut. Then the baby was taken to the warmer for a routine checkup.

I followed the baby to the warmer and while Aileen was waiting for the placenta to arrive, she said, “I think he looks like an Ian.” I agreed. Ian Jukes Namm born at 2:44 a.m. on November 13, 2009, weighing 7 lbs 11 oz and 19 inches long. Ian: God's gracious gift. It was the luckiest Friday the 13^th ever.

This Is Only a Drill

I awoke Wednesday morning, three days before her due date, to find Aileen sitting up in bed, grimacing, and looking at the clock.

“Contractions?” I asked. She nodded her head. “How many minutes?”

“Seven,” she replied.

These contractions were different from the Braxton-Hicks she had been experiencing throughout her last trimester. The main difference was that these lasted longer, and were quite a bit more painful.

Our obstetrician had told us to come in when they got to three to four minutes apart. I figured we had some time until then so prepared some hearty breakfast burritos for her knowing that once she was admitted in the hospital, all she could have would be jello, juice, and ice chips until the baby was delivered.

Aileen had prepared the suitcase days before, and it was sitting in the corner of our bedroom, next to the crib. She had already called her mama and they were preparing to drive over from Berrien Springs as soon as her papa came home from work.

After breakfast, she sat on the couch. “How many minutes now?” I asked.

“They stopped,” she said in disbelief. And they didn’t come back for the next hour. With the action suspended, I decided to go to work.

“Do you have your cell phone?” she asked. It was more of a command than a question.

“Yup,” I replied. I made sure the ringtone was on the loudest setting and left for work.

I called her a few times from work, but things remained quiet that day. But we knew our baby would arrive any day now. Her parents decided not to come until the next day.

Relief

Sorry it's been so quiet on this front as of late. It's mostly been because I've been so worried about this pregnancy that I haven't really felt like blogging. As we said in our last post, on our 20-week ultrasound, baby had dilated and echogenic bowel. We were referred to a maternal-fetal medicine specialist who thought that it might indicate bowel obstruction or imperforate anus. We've since been getting serial ultrasounds every 4 weeks or so to follow the appearance of the bowels. Up until the most recent ultrasound, the bowels had not changed in appearance. We were even worried that we would have to be sent to U of M for delivery, just in case baby needed to have surgery after he was born. But praise the Lord!!! Our last ultrasound on Monday showed that baby's bowels appeared normal. Our maternal-fetal medicine specialist said that there was no need to do any more ultrasounds and most likely, baby will be fine. Needless to say, we were both ecstatic! Now we feel like we can really get excited and prepare for baby's soon arrival. Both of our families threw us baby showers, so now we have a mountain of baby clothes, gear, etc. We'll be posting more on those later.

Thank you to all of you that have been keeping the three of us in your thoughts and prayers!

Our little one is (drumroll)...

... a BOY!!!!!!!

The Namm curse (or blessing) continues with the umpteenth generation with a first born male. We were secretly hoping for a girl, but we should have known... We are very excited and so happy! Jukes is already collecting sports equipment for him. From all the kicking he's been doing recently, it feels like he'll be quite a soccer player.

Here are pictures from the 20 week ultrasound. After taking care of so many sick babies at Loma Linda, I was worried that our little baby would be anencephalic, with hypoplastic left heart, and spina bifida. When the images came up on the ultrasound monitor, I was relieved to see his little heart had four normal, rapidly beating chambers. His brain appeared normal. His fingers and toes appeared to be all there. And his spine looked good too. The only concern was that the ultrasound showed some echogenic bowel which can be associated with cystic fibrosis or trisomy 21 (Downs syndrome). However, it is also a normal variant in most cases. My OB recommended a consult with a maternal-fetal medicine specialist just to be safe. Needless to say, we've been a little worried. We are hoping for the best and are placing everything in God's hands at this point. There's nothing else we can do but pray.

Clockwise from top left: face, spine, face profile, and foot

Our little one staring at the placenta

The past few weeks, our little one has been very active. Jukes was very excited when he felt him kick for the first time. At times it feels like he's doing somersaults in my belly. Sometimes I wish I could see inside to see what he's up to in there.

People keep asking if we have a name yet or if we have started decorating a baby room. The answer is no and no. For the baby room, we just moved to a new place and have been too preoccupied with the echogenic bowel. But hopefully after the consultation with the specialist next week, I'll feel inspired to start nesting. As for the name, my vote is for Jukes Jr. (It's just too good of a name to pass up). But Jukes Sr. isn't too keen on that idea...yet. Let us know if you have any name suggestions. We will carefully consider all submissions...we may even give you a prize! :)