Friday, April 20, 2012

Interstage stress

Interstage is the period between the Norwood (Stage I) and Glenn (Stage II). It is the most critical period of a hypoplast's life. Their physiology is fragile and their lungs are still developing. The right ventricle has a tremendous workload during this time. The tiniest cold can send an HLHS baby into congestive heart failure. Its stressful to say the least. 

Every day we weigh Jensen. We time how long it takes him to eat. We spot check his sats. His temperature is checked frequently. Each week I check in with a nurse practitioner from the Infant Single Ventricle Monitoring Program at CHOP. We also alternate visits with our cardiologist and pediatrician so that Jensen sees a doctor every week. Here are the list of red flags we were given by the ISVMP:

fussiness or irritability
change in behavior
change in color
diarrhea, vomiting
not eating well
weight loss
sweating more than usual
change in breathing pattern
increased sleepiness
cold symptoms

Now, for any of you who have been around a baby know that all babies exhibit practically all of these "red flags". So how do you differentiate what is "normal" baby stuff and what is heart baby stuff. I'm quickly learning that the answer to that don't. Its incredibly frustrating and stressful to question every cry, every poopy diaper, every gag reflex. 

Jensen has had a lot of reflux issues lately. This is common in heart babies and the NG tube only makes it worse (the tube does not allow the muscle between his esophagus and stomach to close, allowing acid to backflow). He sometimes wakes up out of a deep sleep gagging, which then causes fussiness. He seems irritable around his feeding time. Is this because of reflux or decreased heart function? I called the NP at CHOP and our cardio here in NC. We were seen by his pediatrician pretty quickly and determined we should just increase his reflux meds. 

He also has had some weight loss (36 g to be exact). This kid generally gains anywhere from 20-100 g daily. So, I called the NP at CHOP and let her know. We were told to wait until we have two consecutive days of weight loss since he doesn't have any other symptoms. If he does lose again, we will be making an emergency appointment with our cardio on Monday. 

Now we get to play the waiting game. We will be anxiously waiting until tomorrow night at 8:30 when we are scheduled to weigh him again. Some days it really feels like we just like any other family with a healthy 2 month old. He smiles and does cute baby things. He has chubby cheeks and looks healthy. However, this week definitely does NOT feel like that. 

Please pray that Jensen gains weight. Also, pray that Jeremy and I don't lose our minds during interstage ;) I know this is only temporary and we can handle it, it is just sometimes overwhelming. 

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