Tuesday, January 18, 2011

Twins Blog - Jan. 19, 2011 - "Going under the knife"

For a while, I've been logging every single detail of each of the boys' conditions. I've discovered that this just wasn't practical. It places too much emphasis on daily changes rather than overall progress. For babies in the NICU, daily fluctuations are not very significant. They may look alright today, but then will plummet tomorrow, only to rebound the following day. Expecting daily incremental progress is unrealistic. We now fully understand why the NICU is described as a rollercoaster ride (ie, up and down) or a tango (one step forward, 2 steps back)

So, rather than focus on daily changes, I'll just recap every few weeks.

They're now about 3.5 pounds each. Their growth rates were really slow in the first month, primarily because their bodies were struggling with things like breathing and circulation. We've noticed just a few weeks ago that the boys finally look like they're really starting to grow. Each of their bodies look significantly larger than before and their color looks much better.

Patent Ductus Arteriosus
Both the boys were diagnosed with patent ductus arteriosus (PDA) which is very common in preemies. Short bio lesson:

While the baby is inside the mother's womb, the ductus arteriosus is a blood vessel that allows blood from the heart to bypass the lungs and travel to the rest of the body. The baby gets its oxygen from the mother so, the blood doesn't have to go to the lungs to pick up oxygen. When the baby is born, this blood vessel is suppose close so that the blood from the heart would get to the lungs. This often doesn't happen with preemies. As a result, this places additional stress on their heart and lungs to work harder, hindering development of other organs. When a doctor hears a heart murmur with a newborn, it's usually because of PDA.

Ethan was diagnosed first and we had quite the scare. He was put on a 3-day course of NeoProfen. The ductus closed after the 2nd day of treatment and hasn't returned since.

A few days later, Aidan was diagnosed with PDA. He had just started to digest milk but because of the drug NeoProfen, he wasn't allowed to have any more milk during treatment. His ductus just would not remain closed even after a second round of drug treatment. Surgery (ie, PDA ligation) was our next option. Fortunately the procedure went smoothly. Prepping for the surgery and post-op procedures were actually more extensive than the surgery itself. Still, that was the scariest and most anxiety-filled moment of our lives.

Both the boys were also diagnosed with pneumonia, which is also very common in preemies due to premature lungs and the use of the ventilator. There's not much that can be done other than giving them a steady diet of antibiotics. Fortunately, both of them has shown significant improvements on this front.

The pneumonia caused both boys to have a slight fever at one point. In order to rule out meningitis, the doctors had to perform a spinal tap on the boys. Prior to doing so, they need the parents' approval. This was yet another scary moment for us.

Another common condition that the boys suffered from was jaundice. For this, they were given UV light therapy. This was on and off. It just seems very random. They would need it one day and not need it the next, only to need it again the following day.

Both the boys are fed through a tube that goes directly into the stomach. They're supplemented with IV nourishment. Both appear to be able to digest fairly well, considering the circumstances.

Both the boys have developed an attitude that has become infamous among the NICU staff. Neither one of them likes to be fiddled around with. They don't like having their temperatures checked. They don't like having their diapers changed. They don't like having their blood drawn. Every time a nurse or doctor has to work on them, the boys' blood oxygen concentration would worsen and their ventilators would have to be dialed up. But if it's quiet and they're left alone to sleep, their breathing improves significantly.

Neither of the boys likes having tubes and wires stuck on them everywhere. There are 4 sensors on each of their chests that are held in place with just a piece of tape. These get yanked out easily with their bare hands. Ethan is always yanking on his ventilator tube that goes down his throat. Fortunately, this is held in place quite securely. Aidan does the same and in one instance, he succeeded in dislodging it. A team of staff had to revive and retube him. So, nowadays, the nurses like to wrap them in blankets to keep them from tampering with their equipment.

Both boys are still on the vent to help them breathe. Weening off the vent is a major obstacle for the boys.

Ethan used to flail about quite a bit inside his incubator. A baby that moves is always better than one that doesn't. But this does expend energy that would be better used to develop his lungs. Every time after one of his flailing episodes, the nurses would have to turn his vent up. Fortunately, he appears to now understand that flailing about is not very fun. He's much more calm now and as a result his vent settings have gone way down.

Aidan seems to be very sensitive to noise which is not great if you're in the NICU. There's always some sort of alarm going off. He makes wild movements with his limbs when there's a lot of noise. Lately, we've been able to calm him down by placing a bean bag on him and covering his ears. His vent settings have also shown improvement.

Today is day 46 at the NICU. It has been an emotionally draining experience for us. Each setback hits us like a ton of bricks. Positive progress is few and far between. But we have come to learn to take the hits in stride while celebrating each tiny victory along the way, regardless of how small it is. At this point, we're not even hoping for the day the boys can come home. That's too far away. We're just hoping for the boys to get off the vent. That way, they can be held by mom and dad for the first time. And they can see each other for the first time. (They're incubators are actually located in separate locations in the NICU, so they've been apart since birth. This was done so that the hospital staff doesn't mix them up.)

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