Home of the Four Trans

First Week HOME

After weeks in the hospital, our first week home with Justin had been truly blissful. Taking care of him was like taking care of any other child, without as much anxiety as I thought I would have. He sleeps most of the day, waking up exactly every 1.5-2 hours for his feed. He spends most of his day being held by Mommy, watching his jungle mobile go round, observing his surroundings, and listening to his Mommy sing to him. He acts as if nothing has ever happened to him. He’s a happy little baby happy to be home without all the “bells and whistles” of the monitoring and IV machines. All we do all day is gaze into his large, brown eyes while he’s awake, or at his peaceful face while he’s sleeping. Looking at his beautiful face never gets boring. Loi actually got to go back to work for a couple days! So, I spent most of the days with Baby, while we shared night duty, taking turns between feeding Justin and comforting Nathan.

Justin’s One Month Birthday

If Justin had been well, we would have had a huge one month party for him to celebrate his first month of life. But, since there are so many restrictions with visitors and with the cold season just around the corner, we didn’t plan one. But his thoughtful grandma (Loi’s mom) planned a small one on Sunday, September 9, 2007, nonetheless with just the grandparents, parents, Nathan, and cousins to share with him. She ordered a small cake, a roasted pig, steamed chicken, and flour cake to offer as gifts to the deities to thank them for his first month of life and to ask for his health and prosperity. We finally got our first family picture together since Justin was born.

Correction of Bowel Malrotation (LADD Procedure)

The day following his First Month Birthday Party, Justin had to return to CHLA for a scheduled surgery to correct the malrotation of his intestines. Although Loi and I were both anxious about him returning to the surgery room so soon after his heart surgery, we agreed that it would be better to correct the problem in a controlled setting than wait until his bowels actually twisted on itself. Even if we decided to wait a few more months, we would be living with the uncertainty of when and if his bowels will twist. All his doctors and surgeons also were supportive of our decision.

His surgery was set for 10:45AM on Monday, September 10th, which allowed him to feed on breastmilk only until 6AM and Pedialyte until 8AM that morning. We arrived for our pre-op at 8:30AM and were informed that the first surgery was canceled so Justin would be in earlier than we had planned. We dressed him in a hospital gown, took some pictures (because he looked so incredibly cute), met with the surgeon, Dr. James Stein, one last time with our “last minute” questions, Justin was weighed and measured then had his saturation levels, heart rate, and blood pressure checked before we carried him to the second floor to prep him for surgery. As soon as we got up to the bed to wait for the anesthesiologist to meet with us to explain the sedation procedure, the nurses oo’d and ah’d over how adorable and beautiful he was. One nurse even took “dibs” to carry him into the OR. Justin definitely knew that he was back in the hospital, despite all the positive attention he was getting, and was looking everywhere with his eyes scrunched up, knowing something “bad” was going to happen. After we had gotten a full explanation of how Justin would be put to sleep (with a mask around his nose and mouth), Loi and I, once again, had to walk our little boy to the front of the double doors leading to the OR, passed him to complete strangers (we had only met them within the half hour), and said goodbye. Again, the stranger told us that they’d take good care of him, then carried him off. The operation lasted 1 full hour.

The surgeon, Dr. James Stein, explained to us after surgery that when he had opened Justin up, he found that not only were his intestines “accordianed”, but his pancreas and the portal vein connecting from the intestines to drain out blood were wrapped around the duodenum of the stomach. What this means is that in the future there may be some obstruction around that area when Justin starts to feed on solids, which may require another surgery to reroute his intestines. But, there is also a chance that this part of his anatomy will grow normally, and he may avoid the surgery all together. Dr. Stein also found that his gall bladder was scarred possibly from being unable to feed immediately after birth, which caused his bilirubin levels to increase (jaundice). The effect of this would be gall stones possibly in his teenage years. By this time, I’ve already learned to appreciate each day I have with him. The news did not distraught me too terribly, although I did have my usual million questions just so that I could be prepared for what could be ahead. I still cannot understand how his inside anatomy could be so “messed up”. Dr. Stein said that even for a heterotaxy baby (with heterotaxy affecting only .4% of the 3% of babies with congenital heart disease), his gastro-intestinal anatomy was rare.

For the first 2 days after surgery, he was irritated by an Oral Gastric (OG) tube down his throat used to drain the extra bile and blood from his stomach, and his inability to eat. It was difficult for us to see Justin crying and looking at us, back and forth, not understanding why we weren’t giving him food. The only ways we were able to soothe him were with a sugar water dipped pacifier, holding and singing to him. We even talked to him at times, trying to explain to him that we knew he was hungry, but that he needed his rest so that he could recover quicker. Although he’s only a month old, I think he understood because he would calm down and go to sleep after that.

The surgeons finally agreed to pull his tube out on the morning of September 12, third day of his recovery, and allowed him to start on Pedialyte and breastmilk by mouth. His first feed of the day was Pedialyte, with the subsequent feeds of breastmilk. He’s definitely gotten his appetite back quickly, finishing his 60cc (2 oz) within 5-7 minutes! He can finally rest now that he’s got a full tummy. I had gone home to Nathan the previous night, so I was not there to witness this brave warrior attack his first meal. But, when I returned that evening, Justin was sound asleep, not even waking up to the screeching cries of a three week old neighbor who had just undergone heart surgery. Justin was back to usual self…eating and sleeping.

Since the night went well, with Justin feeding sufficient amounts of breastmilk and NOT throwing up, the pediatric surgical team decided the following morning, September 13, that Justin would be allowed to go home that day. With Loi and I still traumatized from our first discharge from CHLA, we did not want to rush out the door this time. We still were sure to have all our discharge paperwork and prescriptions were in order, packed our things, but did not push Justin to eat. Well, we didn’t have to. He was so hungry, he ate all at his own will. But, at his last feed just as we were waiting to receive our discharge insturctions (last step before we’re out the door), Justin vomited. Yikes! Deja Vu! He also started getting congested and had green boogers in his nose. So, we called the Resident Pediatrician to look at him one more time to make sure that he’s safe enough to go home. The attending cardiologist also stopped by to see him. They said that it may be a bit of a cold, but the only way he could get better and not worse (with that developing into pneumonia) is by going home. So we packed little Justin up and hit the road…

Now that Justin has had his surgery, the surgeon warned us that like anyone who has ever had abdominal surgery, Justin is at risk for obstruction, meaning his GI tract may get clogged sometime down the line by food that he’s ingested. But the chances are 4%-6%. Most patients never need any type of intervention. Although these numbers are meant to ease my worry, it does not eliminate it. But, again, we can only live one day at a time.

Justin is an amazingly strong boy. All the nurses who have handled him have asked us to hold his arms, legs, or head as they attempted to remove or add something to his body. They were surprised by how strong he was, always pushing things away when he didn’t want it to get near him. The nurses could not even extend or lift his arm to place a thermometer under it. He didn’t even have any pain medication after the surgery aside for one dose of Tylenol. He was more in hunger than in pain.

Little Champ’s Quality of Life and Will to Live
Needless to say, Loi and I are very proud of our little Justin. He’s opened our eyes to so many things. And, though the challenges have been and will continue to be aplenty, we appreciate and look forward to every moment with our little champ. Some have wondered why we have put ourselves, Justin, and Nathan through all these obstacles and pain. Some questioned our decision. I have even had one person express to me that I should not speak of any of this to him when he gets older for fear of him resenting us and his life when he actually “understands”. I had often thought about this matter of “quality of life” prior to giving birth to Justin. As every mother wishes for her child, I wanted the best for him, I wanted him to be happy, I wanted him to have a full life. I did not understand how a child with such a complex heart condition and unique anatomy would be able to achieve all that I wanted for him. I thought that his life would be full of pain and misery. But, through much contemplation, observation, and growing as a person, I’ve realized that the quality of Justin’s life and how he perceives it is entirely dependent on Loi and me.

Yes, my baby was born with a birth defect. But, I want my baby to know that he is perfect because he has purpose and he has all the love around him. He WILL have a beautiful and happy life, despite the moments of pain, because he has people who love him and cherish him. He will not have to question why he’s here on this earth because we will tell him everyday that we love him, and his very being and presence has made us better people. As he grows, the realization of his purpose will grow, and his inspiration will spread. With purpose he’ll have the will to live. He’ll appreciate his life because we appreciate his life. We do not want him to be oblivious to or forget all that he’s been through because it is all that that defines him and his strength.

One day, after Justin gets his shots and the cold season passes (so in about 3-4 months), you will all get a chance to meet this special boy and see what all the fuss is about. He is so beautiful in so many ways. We have not for one millisecond regretted our decision. He truly is a gift.

This entry was posted on Friday, September 14th, 2007 at 5:59 pm and is filed under Heart Disease, Justin. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.