Update and What's Ahead

Hey everyone, this is Zeb.  Leah had mentioned that people were getting anxious for a new post, so I thought I would take a chance to update everyone on how Caleb is doing and also try to explain where things may be going.

I'll start with a short explanation of how Caleb and his ventilator work together. Caleb is still on the conventional ventilator, and he has three settings on this ventilator that we follow pretty closely, 1) oxygen percentage, 2) pressure, and 3) rate.  The oxygen percentage is pretty self explanatory.  Currently 50% of the air that is being pumped into Caleb's lungs is oxygen.  The air we breath contains approximately 21% oxygen, so his oxygen requirements need to come down in order for him to be able to survive breathing the air that you and I breath.  The pressure is actually comprised of two numbers.  The first number is basically a minimum pressure.  Caleb has to have a certain amount of air pumped into his lungs in order to prevent them from deflating completely, so this number stays the same all the time.  He also has a maximum amount that is being pumped into his lungs to ensure that his lungs are inflated sufficiently.  If Caleb can't fill his lungs on his own, this maximum number covers the difference.  The maximum amount can actually be reduced as Caleb learns to breath on his own and is strong enough to take breaths that completely fill his lungs.  Currently these numbers are at 7 and 16, respectively.  Finally, there is the rate of breaths Caleb receives per minute.  The conventional ventilator actually monitors whether or not Caleb is trying to breath on his own.  If he takes a breath on his own the ventilator won't initiate a breath.  However, if he forgets to breath, the ventilator will initiate a breath for him.  Currently his rate of breaths is at 28.  The great thing about the ventilator is that it is keeping Caleb alive.  The terrible thing about the ventilator is that it actually damages his lungs, and the longer he is on the ventilator the more damage it does.

When Caleb was first placed on the conventional ventilator his oxygen was at 38%.  So obviously that number has slowly climbed over the past few weeks, and obviously that's not what we want.  Last Monday we decided to start Caleb on a steroid treatment that we hoped would allow us to reduce all three of his ventilator settings. Typically the steroid results in a reduction in the rate and pressure settings first, and the oxygen follows shortly thereafter.  The largest benefits from the steroid are typically seen between days three and five.  We have now come to the end of the steroid treatment, and unfortunately, the steroid really didn't work for Caleb.  We were able to lower both his rate and his pressure, but his oxygen had to increase to compensate for the reductions in the other two settings.  The steroid treatment was really the last conventional option that we have available to try to speed Caleb's lung development, which is obviously something we want to do in order to avoid the damage the ventilator causes.

So at this point we settle in for a prolonged and difficult NICU road.  There may be one or two non-typical treatments that we may try, but of the options we've discussed none have been shown to have a direct benefit on lung development.  Caleb will need to grow new lung tissue and he will need to grow that tissue at a rate that outpaces the damage that is being done by the ventilator, something that, thus far, he has not been able to do.  So the doctors are increasing the amount of milk he receives, supplementing that milk with extra calories and nutrients, and continuing his breathing treatments in the hopes that our little guy will grow faster and his lungs will get stronger.

Caleb's situation is very unique.  In fact, only 1% of pregnant women experience premature rupture of membranes prior to 20 weeks.  And of that 1% approximately 75% of those women deliver within the first 48 hours after rupture.  I have read that a substantial portion of a baby's lung development, which requires the presence of amniotic fluid, occurs between weeks 19 and 21.  Since Leah's membranes ruptured just after 19 weeks, Caleb missed out on a critical stage of lung development.  So Caleb is in a pretty select group that is hard to compare and hard for the doctors to know how to treat.  We have had several friends, with very good intentions, tell us about friends or family with a preemie baby that was born at X weeks, was in the NICU for a month or two before going home, and is now alive and well.  And when Leah was taken to labor and delivery we thought that Caleb would follow that same track.  Now I'm not saying that Caleb will never come home with us or that it would be impossible for him to come home sooner than we anticipate, and I'm not saying that other preemies and their families don't have significant challenges, but from what the doctors are telling us, Caleb's challenges are very unique and he likely won't be coming home any time soon.

On Saturday we had a conversation with one of Caleb's doctors and he told us that a child with a history very similar to Caleb's recently passed away.  He had made it 7 months in the NICU, but ultimately wasn't able to develop enough lung tissue to survive.  Leah and I both know that Caleb still has a long road to be able to come home, but we really hadn't discussed mortality with a doctor since the morning after he was born.  Our most recent discussions have revolved around Caleb eventually coming home on some type of ventilation and how we would manage that type of a situation.  So to change the topic of discussion from the struggles we'd face when bringing him home to the struggles we'd face from never having a chance to have him in our home was a large blow.

Somehow all of this will work out.  I don't know precisely what the future holds for our little family, but we will continue to hold onto each other, and somehow all of this will work out.

Thank you for all of your prayers and support.

Zeb