One day at a time.
I needed a few days to recuperate from the information and emotion overload.
Justin is fine. He’s doing better. He’s gaining his dark complexion back. Feeds are improving, though not optimal. But, at least it’s enough to keep him hydrated.
Friday to Monday were full of doctor’s visits. In light of his heart condition and the possibility that he’d be in surgery sooner than we had anticipated, I made an appointment with his pediatrician to update his immunizations and Synagis (RSV) shot on Friday. The previous few nights were already horrendous with him feeding below the minimum for his weight in order to stay hydrated. Both Loi and I were at our wit’s end trying to figure out why, why, why. Come Friday night, the bad made a turn for the worse. He was clearly uncomfortable with the constant fussiness, crying, and sleeplessness. He barely ate all day. I made an emergency call to the on-call cardiologist who suggested that I put him back on Reglan to help his stomach empty quicker. His heart did not seem to be the issue, according to him, but acid reflux. Bad advice. The worse we thought it could get turned into a nightmare. No sleep. More crying. By morning, he’d eaten the equivalent of what he would normally eat in one sitting…2 ounces. We thought he needed a change of environment from our suffocating home, so quickly packed the diaper bag, pump backpack, dressed Nathan and ourselves, with Loi and I taking turns holding Justin as he screams. Just as Loi passes Justin to me to load him into the carseat, I noticed his eyes rolling to the back of his head. Freaked out, I called the pediatrician to wait for us (as he was closing) to examine the little sucker. I did NOT want to go to the hospital! We rushed the entire way there with Nathan complaining about not wanting to go to the doctor’s and negotiating with us about eating his mighty mini popsicle stick before breakfast. Justin soundly slept while sucking on his pacifier. Overwhelmed by Justin’s escalating condition and Nathan’s non stop chatter, I gave into Nathan’s wants and kept quiet, concentrating on the exotic cars passing by ours, while my mind continued to race uncontrollably. I could see it already, I thought. Us, being admitted into the hospital. Justin, with IVs hooked up to him. Breathe, I reminded myself, breathe. After a quick examination, his pediatrician determined his stiffiness, back arching, and eyes rolling to the back of his head as reaction to Reglan. His body just wasn’t taking it. The drug crossed over to his brain and caused some serious side effects. His suggestion was to take Justin off the Reglan and put him on Prevacid (to decrease the acid production in his stomach) in conjunction with Zantac (to line his stomach and esophagus to decrease the burn felt when the acid goes up his throat). When we left the office, we decided to pursue our original plan of visiting maternal Grandma’s house. The day progressed with promise of a better tomorrow with him increasing his milk intake. Color returned to his face by the end of the day. He was sleeping often, but not struggling while drinking. That evening, we took the pediatrician’s suggestion and gave him Prevacid. Havoc reeked! Crying! Screaming! No sleep! Thinking it was the environment, we took him to my mom’s again on Sunday. Though the morning was a struggle, he got better. By night time, when we gave him the Prevacid again, havoc returned.
By daybreak, I was grateful we made it through the weekend, long enough to make our appointment with the cardiologist. After a quick recap of our weekend disaster, the cardiologist gave us his opinion. It seems the leaky valve is causing his heart to work harder than usual, thus enlarging it, and causing it to push against his esophagus. This may contribute to his difficulty swallowing. Now, it is his hope that after the Glenn Procedure (second heart surgery), the pressure on the leaky valve will decrease, thus alleviating some of the leakiness. “This is my hope, but I can’t guarantee it,” he reminds me. I shrug and gave him an “of course” look. Then, he prescribed additional medication, Catrophil (sp?), to help control the volume of blood pushing through his BT shunt, that may be causing the leaky valve to become leakier.
I left the office with a huge grey cloud looming over me. Depressing thoughts of heart transplants and how far he’ll make it consumed every nerve of my body, eating me up inside. Loi and I walked to the neighboring CHOC pharmacy to fill the prescription. While it was a beautiful, sunny, breezy day out, I couldn’t appreciate it. All I could think of was how I was going to lose my baby. I think Loi was talking, but I couldn’t hear it. As we waited for our order, Loi got me a water, but I couldn’t drink it. Inside, I was sighing, aching, crying.
That same day, we met with a Gastroenterologist for a consult, hoping to fill in some of the holes the cardiologist could not explain. We spent a good half hour explaining every detail about Justin’s medical history from the day he was born. The GI’s diagnosis: his heart is inefficient. Obvious, no? He went on to explain how the body is not getting enough oxygen, which affects the tissues of the body. In Justin’s case, the lack of oxygen is limiting the motility of the stomach functions, slowing the ability of food to pass through the stomach quickly enough. So, it goes back up, causing Justin discomfort and lack of appetite. His eating troubles may be attributed to acid reflux. But, to say this is the problem would be kidding ourselves. The only way to “fix” the problem is to “fix” is heart.
“But, the valve could never be fixed,” I worried outloud.
“Well, that’s a problem you deal with with your cardiologist,” he answered as he brushed his hands clean of us.
Then, he went on to lecture me about how it’s not our fault and that our baby may need an Nasogastric (feeding tube through the nose) or Gastric (feeding tube surgically implanted to the stomach) tube if he does not continue to feed well. He was beginning to agitate me with all this obvious medical advice, given to us like we’re dumb. But, with a straight face, I agreed.
“I just want him to be able to get to the next stage,” I told him.
Justin needs to be well nourished and adequately grow to be able to recover well from his next surgery. Though feeding a baby through a tube is not ideal, if this is what we need to do, then this is what we will do. I turn to Loi as he rocks our hungry baby to sleep. His eyes were to the floor, his lips puckered together. I knew that look, a look that I could only steal with a glance. If he knew I was watching, he’d never let me know how tremendously disappointed he was to hear of how much more abnormal our baby could be with a tube in him.
Sometimes, I disconnect to keep from falling apart.
This is my child, my blood and sweat I’m talking about to these doctors. As emotional as I can be about the information given to me, I do not allow myself to be. When meeting with his doctors, it is purely that–a meeting. I am my child’s advocate, his voice. I cannot let tears and irrationality cloud my thinking when making decisions. So, I turn on the business switch, and leave the psycho Mommy at the door. I try not to look at his precious chubby-cheeked face as we discuss his health because I know I will falter.
If I could do this, I wonder, do the surgeons, doctors, and nurses do the same? Do they dehumanize my child to the level of “just another body” and forget that he is a person who is cared for and loved and his loss in whichever way will devastate more lives than his? Do they remember that this is a person who can feel when pricked and psychologically compromised when traumatized by pain? Would they question their actions and prescriptions if it were their child in place of mine? I face this fear whenever I hand my baby over to any of them. I worry that he is perceived as just another “job”.
But, as Nikki and Daniel so encouragingly reminded me in her last comment on “I worry, it’s his heart,” He has a way of bringing people into my life when I need them most. I truly feel blessed to have such a talented team by our side. The cardiologist, especially, is nothing short of brilliant. He is one of those few doctors I do not question whether he sees my child as my child, a person, a human being.
My Mommy mode is back on, and I processed the information that the cardiologist and GI doc fed me, along with Loi. The medications definitely caused a great downturn in the feeding issue. But, it also turned out that we had some number 1, slower flowing nipples mixed in the batch, possibly contributing to Justin’s feeding difficulty. He would suck so hard, but nothing would come out, then he’d tire in frustration. He probably caught a cold or two, which caused nasal congestion, which equals inability to eat. His heart is probably a factor. But, his oxygen levels are still relatively high; we’re still stumped about this.
All we know is our baby’s doing better. That’s all we can hope for–a day better than yesterday. He’s back to his usual self with more wide-mouthed smiles and adherence to a routine of eat, play, sleep. It is days like these when I forget that anything is wrong. I suppose that is why He throws in those curveballs to keep me on my toes, and to remind me that this challenge is not meant to be easy…and, to remind me to take it one day at a time.
December 13th, 2007 at 3:46 pm
I’m so glad to hear he’s doing better. You all remain in our prayers.
December 18th, 2007 at 8:58 pm
Justin is lucky to have you.