Home of the Four Trans

Heterotaxy and Feeding Issues

I don’t know how Loi can sit at the hospital everyday. I’ve been here for barely a day and I feel so hopeless and depressed already. This morning we had a rough start. We came into the CTICU looking for some time with Justin before he was sent out for the GI Exam, but we had missed him by a mere 5 minutes. When we came back about 1.5 hours later we were informed by the nurse and attending physician that the preliminary results showed that Justin had mal-rotated intestines (meaning it was all twisted and tied up in knots), and that he had severe reflux. Both of these results meant that we would have to delay his feeding for who knows how much longer, and worse, he may need more surgery. While we had to wait for the pediatric surgeon to confirm the reports, at that point, we wondered when we’ll ever get to bring baby home. Feelings of hopelessness led to prayer. I prayed for Justin to recover well, and to not need any additional surgeries for his intestines and acid reflux. I prayed while I sat next to him, I prayed while in the waiting room, I prayed while eating. At 4 o’ clock, when Loi went in to visit him, the attending physician gave us news that the surgeon found that Justin’s intestines were not mal-rotated but mal-positioned, meaning it is on the wrong side of his body. As bad as this sounds, it was good news to us because it meant that he would not need surgery for this before learning to feed. My prayers had been answered. The nurse started him on Pedialyte through an NG tube through his nose at 2mL per hour (so very little) to see how his body would react to it, due to the suspicion that he has acid reflux. From the last time Loi checked, Justin was doing fine. If all goes well, he may be able to drink my milk soon.

Almost Free At Last

While all the medication, tubes, and IV’s are sustaining and improving Justin’s life, we are always ever so excited when any are removed. Today, the oxygen cannula was removed because he can breath on his own now. He is off all his medication, except for the Heparin so that there would be no blood clotting around the IVs. The nurse also removed the IV in his left wrist today. Justin is scheduled to have the central IV leading to his main artery removed on Wednesday, and replaced with a PIC line through his arm. The central IV is being replaced because the longer it is in, the higher chance he has of developing an infection.

Reunited…

I had not seen Justin for five days, and last night was the first time in what seemed like forever. He has grown so much in the last week to become such a beautiful child. Pictures do not do him justice. As I held him, I admired his defined lips and chin, the chubbiness of his cheeks, his handsome nose, and his amazing, large, brown eyes (which I only saw opened for the first time ever today). As I held him, I almost forgot that he had anything wrong with him. He looked so peaceful in my arms, I just wanted to take him home. Loi also had a chance to hold Justin for quite some time before I arrived. Loi had told me that Justin had been whining and whimpering all day. We suspect that he’s terribly hungry, although he does receive nutrition through IV. But, when we hold him, he’s a peaceful little lamb again.

Homesick

I wonder if it will ever be normal again. I mean, we often take for granted the mundane, the everyday of everyday life. And, here I am yearning for all of us to be together again in our familiar home with our family dinners, playing with Nathan, going for walks, going to work…Perhaps it will never be “normal” again; and this is true regardless of Justin’s heart condition. But, I look forward to the day when we are able to adapt and create a new level of normalcy, one that involves all of us being together again.

The last couple days have been fairly calm. Not much has changed besides having his meds slowly reduced. The docs have been talking about extubation, but because of what happened on Monday, I didn’t want to get too excited just yet. During rounds this morning they again discussed extubation, however, today they all agreed it was the right time. A rush of mixed emotions quickly hit me realizing that this was the biggest milestone since he had his surgery. Probably noticing my nervousness, the nurse quickly assured me that everything would be fine and the process is quick and painless.

The respiratory therapist proceeded to remove the tube running from his nose and just like that he was breathing 100% on his own. It was a great feeling, but I told myself not to get too happy because there was still a chance we would need to get re-intubated. A few hours goes by and he’s still breathing on his own, but he was taking lots of small breaths instead of fewer deeper breaths. To help him take deeper breaths he was put on a Vapotherm machine that sends pressurized warm oxygen through the nostril. Justin is taking much stronger breaths now and his blood gas results are steadily improving. He should be on the Vapotherm machine for no more than a day.

Justin’s mommy will be joining us tomorrow for what should turn out to be a relatively calm day. I don’t expect much changes tomorrow besides maybe eliminating a couple of his meds as well as removing the central line that was put in his belly button at birth. He’s scheduled to have an upper gastrointestinal exam on Monday to check if he has a mal-rotated intestine due to being heterotaxy. If all goes well he should be feeding by bottle by either Monday or Tuesday. We’ve been warned that feeding is usually the longest phase in the recovery process because one, kids usually forget how to suck and two, they get tired fairly easily. Hopefully the sucking should be a non-issue because he’s using a pacifier just fine.

After a tumultuous day on Monday after his surgery, Justin is on the road to recovery. I returned to Orange County on Tuesday afternoon while Loi continues to monitor Justin’s progress and keep him company in Los Angeles. Loi calls me with an update almost every hour.

Everyone asks me, “Is Justin doing better? Is he OK?” And, I hesitantly answer, “Yes, he’s doing better. But…” There’s always a “but” because I’m almost afraid to relish in joy in fear of disappointment. There are always brain tests, blood tests, and x-rays to make sure that he’s OK. I tightly wait for the results every time.

According to Loi’s reports, Justin is progressing everyday. The doctors have taken him off the pain medication completely (aside from the usual dose as the nurse feels necessary), his bleeding is minimal, so they took out his chest tube, all his vital signs are improving, and he is practically breathing on his own now. So, by tomorrow he may be off the ventilator.

There are some factors that warrant concern; But, the doctors are monitoring those very closely. He had mucous in his lungs that they had to pound and suck out, he has a bit of a respiratory infection that is being treated with antibiotics, and he hasn’t pooped possibly due to his temporarily damaged liver from all the medication he received following the excessive bleeding debacle. So, while he is recovering, it is slowly.

The highlight of the week, so far, is that he opened his eyes for the first time yesterday. Loi said that he looked like he just woke up from a sleep and looked around as if he did not know where he was. He stared and studied everything around him, including his father. He stayed awake again today for 1.5 hours with Loi.

We also received an official report on his abdomen x-ray that confirms he has complex heterotaxy. This is a condition where his entire gastro-intestinal system is rotated, meaning all his organs are on the wrong side of the body. There is not much that the doctors are going to do about this unless he has problems feeding. My greatest concern is that he does not have spleen as a result of his developing heterotaxy. Not having this organ means that he would be more prone to infections, so he’d have to be on antibiotics for the rest of his life.

But, at this point, we can only live moment to moment, day by day until we can finally take him home. Even then, we do not know what the future holds and can only take it one day at a time, and deal with each battle as it comes.

For now, let’s not forget what we have today…

Through this entire ordeal with Justin we have not forgotten about our firstborn, Nathan. He was given to us to always make us laugh. We are continually amazed by his humor and intelligence. Justin’s surgery unfortunately fell on Nathan’s second birthday, so we did not have the opportunity to spend it with him. His aunts and uncles, however, made it a day to remember by taking him to the Aquarium of the Pacific (because he loooooves fish and sea animals) and to play miniature golf (to hone his Tiger Woods skills) with his cousins. If you’ve ever met Nathan you know that he is really something else. And, yes, he still has an obsession with balls, which I will never fully understand. His bossiness is also really starting to bloom and he is definitely learning to take charge. At the miniature golf range, he allowed his uncle to show him only once on how to play. After that, he told his uncle, “I know how, I show you”. Then, he’d pick up the ball, bring it closer to the hole, and putt it in. His uncle was pleasantly surprised on how coordinated Nathan was. Ahhh…my little Nathan. I’m so proud of you.

A day never seemed so long to us as yesterday when Justin underwent surgery. Nothing could have prepared us for the immense stress and agony we experienced as the day progressed.

Rise and Shine, Justin…

Loi and I arrived at the hospital just minutes before the team came in to sedate and prep Justin. We spent about 10 minutes with him, gave him a few words of encouragement, told him we loved him, and kissed him before they started rolling him out of the CTICU down a narrow corridor towards the OR. We followed him the entire way, with Loi right beside him stroking his hair before he disappeared behind the white double doors. I remember so distinctly how the anasteastiologist told us, with our baby in tow, that he and the team would take “real good care” of him. Although a stranger, I trusted him because I knew I was at one of the most well-known heart institutions in the world and my son was being worked on by one of the best pediatric heart surgeons in the West Coast. And, because I had to; my son’s life depended on these people. There was nothing more I could do for him. So, I believed in these strangers, and I let my son go.

Twists and Turns

The surgeon, Dr. Starnes, started working on Justin at 8:30AM. We were so incredibly nervous the entire time, chatting and praying to overcome it all. He was expected to be done around 10AM. But, at 9:30AM the nurse came to us, just as Loi was leaving to find out the status of Justin’s surgery. She told us the surgery was complete and that the fellow surgeon was just closing him up. His chest would not be left opened, as the nurse and cardiologists had warned us it may be, and that there would be one chest tube left in to drain out any blood from his body. The first question I had was if the surgeon would come to see us to explain how everything went. She said eventually, but he’s working on another patient at the time. Although I felt uneasy, there was nothing I could do at that point.

So, by then, knowing that Justin had made it out of surgery allowed us a long sigh of relief. Loi proceeded to that once dreaded corridor to wait for a chance to see our son emerge from those double doors again. He wanted to catch a glimpse of our baby post-op before he re-entered the CTICU to be stabilized. After seeing him, Loi excitedly came into my room telling me how good he looked, and started calling everyone to tell them that the surgery had gone well. Ten minutes had gone by at this point, and we returned to the corridor to wait for the nurses to call us in to see Justin. While we were waiting, the surgeon strolled out of the OR with his head held high, strided towards us and told us that everything went well. His right pulmonary artery was small, so they had to enlarge it. We shook his hand and thanked him.

About an hour had gone by, and we still were not allowed in to see Justin. Loi finally asked, and they let us in. But, no one prepared us with the fact that everything had not gone “well” and Justin was still bleeding heavily, and that they could not understand why. Doctors were squeezing his tummy as the nurses hurriedly gave him blood transfusions. The respiratory therapists were making sure all the equipment was in correctly. Loi approached one of the nurses who calmly explained that his blood was not clotting properly possibly due to the fact that the sutures were not sewn tightly enough. I thought, this can’t be; I had the best surgeon. He would not make a mistake like that. As the attending physician stepped away for a moment, he explained to us that his blood was not clotting properly possibly due to his low platelet count. So, he ordered for more. I wanted to know how much longer they were going to let him lose blood before they were going to make the call that he needed to go back into the OR…”Not that long” he says. Four hours went by until they finally decided that there is really something wrong. Loi came back with the news that he just walked Justin back into the OR. Loi’s never been so afraid in his life, and really cried for the first time. I made him make sure that it will be Dr. Starnes working on him. It was.

The Waiting Game

I became so impatient with the news and the fact that no one explained anything to me that I could not stay in my room any longer, and made Loi push me around the floor. I finally decided to talk to Justin’s case manager, an RN that works for Dr. Starnes, to get some answers on what was happening to my baby. She had been with me from the beginning and knew I had some concerns about transferring my baby to CHLA and was determined to ease my worries. She promised to call the OR and let me know as soon as she finds out. But, as soon as we reached that dreaded corridor once more to wait for something…anything…Dr. Starnes emerges from the double doors. Those 30 seconds that took him to stroll towards us were the longest 30 seconds of my life. My heart was pounding uncontrollably. I didn’t even wait for him to reach us before I blurted, “Is my baby OK?” He said he found the source of the bleeding and fixed it. I asked him if there could be other sources or that’s it? He said that’s it, but Justin still had blood clotting issues. I stared at him for awhile and said thank you. I was in too much shock to even think straight. I was angry. I was frustrated. My baby had to go through so much already…And, he was supposed to be the best?

We waited outside the OR yet again for baby to come out. Twenty minutes later the fellow surgeon emerged. I asked him about the sources of the bleeding. He explained that it was near the area they had performed the shunt, and at another vessel where they had not noticed bleeding before. He seemed in a hurry to leave the conversation, so I let him go. There’s no use being mad at that point. I just wanted to see my baby. I wanted him to be ok.

While they were running more lines into his neck for IV and medication in the OR, I went back to my room to wait for more news. Another 20 minutes went by before Loi came to tell me that he’s back in his room and was being stabilized. The attending physician had told Loi that Justin’s bleeding is at the level it should have been earlier. Loi was optimistic Justin will be ok. Of course, he was just as worried as I was, but he knew one of us had to be strong and stay positive.

We continued to follow up with his blood tests to make sure that he was progressing adequately towards recovery. When we checked in at 11PM that night with the night nurse, he was doing well. So, we went to sleep knowing that he was in good hands.

Reflections…

I asked Loi that night if he still thought we made the right decision coming to CHLA to have Dr. Starnes work on Justin. He said, he had his doubts, but is still satisfied with how the nurses have been caring for him. They are a specialized team who all knew about how to care for children with heart conditions. They also took the time to explain to us the medications being used on Justin, the things to expect pre and post op, how he’s progressing, and they did this all with patience.

After all that is said and done, I still think we made the right decision for Justin. I do not regret the decision because I know I’ve done my research and chose the best possible place and surgeon for him. In life, there are so many uncertainties, so many factors that I cannot control. At the end of the day, we are all just humans. Mistakes will happen in this world. But, God has a plan. I’ve never realized this more…ever since I heard news of Justin’s heart defect. Both Loi and I believe that we were given this child because we were chosen. And, we just need to accept that this is his and our fate.

Do I want a healthy child? Yes. But, only because I cannot stand seeing my child’s pain. But, as Loi continues to reiterate to me, even with a healthy born child, there are no guarantees in life. We all have our time, and will all feel pain. It’s the things that does not kill us that can only make us stronger.

I believe in the power of prayer. Thank you to all our family and friends for your continued support and prayers.

We brace our ourselves today in preparation for what is to come after the initial surgery scheduled for tomorrow, August 13, 2007 at 7AM. Both our parents are also in L.A. with us for support, and for a chance to see Justin one last time before his big day.

The first scheduled surgery is called the modified Blalock-Taussig Shunt procedure, and will be performed by pediatric cardiothoracic specialist, Dr. Vaughn Starnes of CHLA. He has been described as the Michael Jordan of pediatric heart surgery. We were lucky enough to have had Justin diagnosed early on inutero so that we had sufficient time to research on the best surgeons possible. We also have a friend who works in the medical field who used her connections to point us in the right direction. We continue to hear such positive feedback about Dr. Starnes and his expertise, so we are optimistic that tomorrow’s procedure will undergo successfully. However, we continue to pray, and are constantly on pins and needles because we never know what to expect.

The things we can expect: the surgery will last about 1.5-2 hours, Justin will be on a respirator for a minimum of two days or until he can breath on his own, his body will be significantly swollen because of the immense amounts of IV fluid that will be pumped into his body, he’ll have additional lines put into his neck, he’ll be sedated and on strong pain medication similar to epidural, he’ll have a long scar down his chest, and his skin color may be blue.

Despite the gruesome picture depicted for us, we are still hopeful and look forward to seeing his eyes open, hearing the strength of his cry, and being able to hold him. Loi still has not had a chance to hold his son for the first time. And, I just can’t wait to get to know my son and the feisty little person I’ve been accustomed to kicking me in the womb over the past 9 months. He’s an amazing little one…only 4 days old…He’s fought for his life thus far, he’s been such a warrior, a brave soul, we know he’ll fight some more.

I finally was able to get my laptop online, so I apologize for not being able to get everyone photos of Baby Justin sooner. You can access the full album here. Here’s a few of my favorite photos.

For those who have a fast Internet connection you can check it out the high-resolution video here.

After a very long night of travel, Justin is getting much needed rest today. He sleeps most of the day like other newborns, except, when he cries you don’t hear a peep because of the breathing ventilator. You can see his cute face scrunch up and that’s about it. I never would have thought I would ever long for the sound of a baby crying like I do now. We hope he will be off the ventilator a week or so after his surgery, but that really all depends on how well he recovers.

These next few weeks are going to be long and rough, but I’m very grateful that we were able to discover his condition early on and had enough time to do our research and planning. My wife did an amazing job coordinating all the different players that would be working with our son; so much so that the hospital staff at choc were pleasantly surprise. So far everything has gone as planned and we pray that everything continues that way so our baby boy could receive the care and attention he needs to overcome this condition.