Justin Post-Op Day 8
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.
August 21st, 2007 at 1:37 am
WOW! Justin has gotten so big and SO adorable!
I’m happy that Mommy and Baby are together again.
And I’m so glad to see that he is doing well; he’s such a little trooper.
Praying for you always,
Yvonne
August 21st, 2007 at 10:59 am
Justin is adorable in the pictures, so I can only imagine how lovely he must be in person!
Hmm. Your comment about Loi being at the hospital every day made me think of my experience about 3 years ago when my dad was in the ICU for about 2 months, had emergency surgery and nearly died twice. I don’t know that it will help any, but I’ll share it just the same… I was at the hospital every day. I somehow had to be. I was far more anxious and depressed when I was home, where the fact that he was gone and the unknowing about his condition pierced me like knives. It was comforting to me to be there in his room–even with all of the unpleasant smells and frightening sights and sounds–to see how things progressed, to monitor his vitals, to examine his food tray (the nurses kept bringing the wrong thing) and to make sure someone came running when anything went wrong. My sisters, both of whom love Dad just as much as I do, reacted very differently. One of them preferred to visit him fairly regularly, but stayed mostly in a waiting room nearby where she didn’t see all that was happening. Her sacrifice was helping out at home where so many things were left undone, since mom was dividing her time between work and the hospital. My other sister was incurably optimistic, even when we had been told he wouldn’t make it, and watched from afar, praying, calling and visiting when she could, and ALWAYS telling us that everything would be fine, even when I couldn’t believe that myself. Each of us expressed our love and support differently, and what was hard for my sisters was what gave me strength to keep going. What was hard for me was something my sisters could handle. That’s the beauty of going through difficulties with others you love. You sometimes find strength in unlikely places, and each of you can cling to the bit you can do… the bit you can give. When dad pulled through, he was incredibly grateful for each of our sacrifices and each of our gifts of love for him. Each of them was a treasure for him, and he cries when he thinks of them to this day.
Praying, watching at the bedside, believing, holding… all of those gifts are amazing. Each of you have something you can offer, and your prayers are such a strong, beautiful gift. Your strength as a family is remarkable to watch. Each moment that you are unable to be with him in person, you are still there in a way that is somehow just as real. At at every moment your precious child is cradled by angels. Justin is so blanketed in love and prayer. He’s so strong. He has a purpose to fulfill. It may take a while, but I’m quite confident that you will all find a new “normalcy” together, and I pray you will have all the comfort and strength you need to weather whatever may come between that day and this.
Love,
Nikki
August 21st, 2007 at 1:15 pm
Justin looks great and I’m so happy to hear that he is doing better. Reading this reminded me to be thankful of my normal everyday life.
Thinking of you, Johnna
August 22nd, 2007 at 9:26 pm
I cannot wait for it all to be normal again also…xoxoxo all around.
August 23rd, 2007 at 1:25 am
Hi Loi and Jennifer,
From the outside looking in, I think to myself…Nathan and Justin could not hope for better parents. Despite the early challenges in Justins life, he has your love, your laughter, your faith and your strength. He has family, friends and prayers in his favor. He is very much loved and so are you.
Love,
Tammy
August 23rd, 2007 at 4:17 pm
Jen and Loi,
I don’t know if you remember me as our paths have not crossed for some time. I am Lynn’s friend, and last saw you before Nathan was born. Your pictures and words make me want to smile and cry at the same time, and I think that this website is a beautiful way to share Justin’s young life.
It looks like you have learned alot of medical terminology already; I am only in my 2nd year of training (in Internal Medicine and Pediatrics), please know that you can call or email me anytime if you have questions about anything at all related to Justin and I will do my best to help.
Love,
Lisa
August 27th, 2007 at 2:02 pm
Keeping all of you in my prayers. Take care Tran family.