Monday, January 31, 2011

Twins Blog - Jan. 31, 2011 - "Between those NICU walls"

The NICU is a very unique place. It's a melting pot of emotions. Each infant is going through something different which means each respective parents have their own unique set of feelings. Fortunately, the average person would never see the inside of a NICU. But just to share what's going on in there, here's a list of typical emotions felt in that miracle room.

Usually this happens to parents who see their child for the first time. Society has imprinted into our minds the image of a newborn. When these parents see that the image of their child differs so much from what they're expecting, it just sends a wave of shock through their system.

Often after all the medical stuff are settled into the parents' mind, guilt sets in and they start to ask themselves things like "what have I done to deserve this?" or "did I cause this?"

In some ways, feeling helpless may be the worse. One particular child in the NICU suffers from a condition where he can't move. I don't know the name of the condition but it's a nerve condition rather than orthopedic and extremely tricky to treat. His mother comes every day to massage him and move his limbs around. The child never even flinches. The emotionless expression on his mother's face is just heartbreaking.

After a doctor/nurse presents negative news to parents, it just feels like everything is falling apart. We've been through our share of this. But even when it happens to someone else, we actually feel it too. I've overheard a nurse tell a couple that their child might not make it through because of necrotizing enterocolitis (NEC). I could literally see their wills shatter before my eyes as both of them were reduced to a crying mess of tears and their speech becomes incoherent.

It's empowering to parents if the doctor/nurse have positive news to report. That's why it's always important to get daily updates even though this puts you at risk of hearing negative news. Every bit of improvement adds to the "we just might make it through this" feeling.

There are babies who are off the vent, out of the incubator, and are fed via bottles. They have parents who come to feed them, burp them, cuddle them, and play with them. Their faces are just beaming as they use baby-talk and tell their child about how life would be when they get to carry their bundle of love home.

Friday, January 28, 2011

Twins Blog - Jan. 27, 2011 - "It's my party and I'll cry if I want to, cry if I want to..."

We heard Ethan cry for the first time today. He's been pulling out his vent tube everyday. Sometimes, twice a day. So they put him on CPAP which freed his throat to enable him to make noises! Needless to say, it was music to our ears. Sounded like a tiny little kitten. We're told that we should rest as much as possible because once the boys come home, their crying will be non-stop. In response to that, I say bring it on. I would rather be annoyed by constant crying than be worried about their ventilators and feeding tubes, etc.

Aidan is still on the vent. But he's improving steadily. That is, the vent settings are decreasing everyday. Hopefully, it won't be long before we hear Aidan's cry.

Sunday, January 23, 2011

Life after birth of the boys

  • Diaper changing.
  • Baby sleep patterns
  • Feeding the baby.
  • Bathing the baby.

These are some typical things that parents worry about when they have a child. Oh how we long to be concerned with those things right now. But that's just looking too far down the road. Our boys were born 3 months premature and will be in the NICU for quite some time. Since their birth, here's a sample of things that we worry about everyday:
Heart murmurs, brain bleeds, blood pressure, body temperatures, meningitis, pneumonia, spinal taps, ventilator settings, red blood cells count, blood transfusions, whether or not they're digesting, blood oxygen concentration levels, etc

It's enough to drive anyone mad. You know those parts that you tend to skip over when reading pregnancy books? You figure that it's just talking about things that won't happen to you, so you jump ahead to the "normal" stuff. I had to go back to read those sections because it's actually happening.

"When are the babies coming home?"
That's the question we get asked a lot and it's awkward for a two reasons.
1. The truth is we don't know. The doctors don't know either. Each child is different and there's just no timetable that can be given to us. Some babies spend a month in the NICU, others are there for over half a year. There's just too many variables at the moment. In order for the boys to come home, there are a couple of things they must be able to do:
-Breathe efficiently on their own. That is, they have to ween off the ventilator.
-Regulate their own body temperature. That is, they have to be able to keep warm outside the incubator.
-Feed. That is, they have to be able to take a bottle. For a full-term infant, this comes as a natural instinct. But for a preemie, this is quite a task since feeding is actually a complex synchronization of sucking, swallowing, and breathing.

2. One would assume that having the babies come home from the NICU would be what we're longing for. Sure, that's the ultimate goal but for now, we just want the simplest of things:
-We want to be able to see our babies' faces. We've never had an unobstructed view of our boys' faces. The vent tube is always on them.
-We want our boys to meet each other for the first time. As of now, our boys have never seen each other. Their incubators are situated in different sections of the NICU.
- We want to be able to hold our babies. Since they're attached to the vent, various monitors, and IV tubes, we've never been able to hold them. The most we can do right now is to reach into their incubators and wrap our hands around them.

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.)

Monday, January 17, 2011

Obi-wan Kenobi vs Darth Vader...yawn!

Remember that duel between Obi-Wan Kenobi and Darth Vader on the Death Star where Obi-Wan sacrificed himself to allow Luke to escape?

That was such a slow fight. I've always thought it was because Obi-Wan was such an old man. However, there were several duels in the prequel trilogy that involved older combatants where the speed of the fight was far greater.

According to Wookiepedia, at the time of their duel on the Death Star, Obi-wan was 57 and Vader was 42.

Qui-Gon Jinn was age 60 when he perished at the hands of Darth Maul (age 22). (Phantom Menace)

Dooku, age 80, defeated Obi-wan (age 35), severed Anakin's arm (age 20), and dueled with Yoda before escaping. (Attack of the Clones)

Dooku was age 83 when he lost his duel to Anakin Skywalker (age 23). (Revenge of the Sith)

Palpatine was age 63 when he killed Saesee Tiin, Agen Kolar, Kit Fisto, and Mace Windu (age 53). (Revenge of the Sith)

Sir Alec Guinness, God bless his soul, was a brilliant actor. But that duel on the Death Star was quite underwhelming.

Monday, January 3, 2011

Twins Blog - Jan. 3, 2011 - "Made it through first month"

Our boys one month since birth. The only way we can tell them apart in photographs is by recognizing the stuff in the background...