Another Trip on the Rollercoaster

Short version:  Elizabeth isn’t having surgery tomorrow.

Long version:  Elizabeth was put back on the CPAP yesterday and is rocking it.  Her PDA is still there and still as large as ever, but since she is breathing good on her own, the doctors would like to hold off on the surgery.  Sound familiar?  From a parental standpoint, we are both thrilled that her surgery isn’t happening so she has time to grow more but after psyching ourselves up all weekend, preparing ourselves for this, to hear it’s going to be delayed is a bit frustrating.   From a Sean standpoint, I’m having a lot of frustration.  Don’t get me wrong,  if delaying the surgery for a week or a month or a year is the best thing to do, absolutely let’s do it.  Who knows maybe she’ll keep breathing well enough that she can put this off for years.  It’s a matter of we keep hearing “she needs this surgery” and then it gets put off.   I keep thinking the word “need” indicates survival.  Well hopefully it gets put off for a while and we can put it off for a long time.

Caleb & Elijah are both on the CPAP and doing great.   Abigail is still holding strong.  We have held her the least which is also another real sore point for us.   Since she is so reliant on the ventilator,  it is hard to be there at a time that is good for her in order to hold her.

Today we learned how to do massages on them.  This is crucial because they are poked and prodded so much that they need to have their hands, feet, bellies, and faces massaged so that they get good touches and aren’t afraid of the nurses and doctors.

Tomorrow is our anniversary.  I am so thankful for my wife.   Life did not turn out the way we planned it.  Every day there is a new twist and turn.   I am glad that God changed all of our plans.  Maybe one day we will finally get to take that honeymoon to Oregon.  If not heaven will be more beautiful than anything we can imagine here on earth.  You are an amazing wife and you love our babies so much.  You do so much for them already including spending a month in the hospital for them.  I know that when the kids finally make it home you will be a super mom.  You are a wonderful example to me.  I love you.

posted by Sean

Short version:  Elizabeth isn’t having surgery tomorrow.

Long version:  Elizabeth was put back on the CPAP yesterday and is rocking it.  Her PDA is still there and still as large as ever, but since she is breathing good on her own, the doctors would like to hold off on the surgery.  Sound familiar?  From a parental standpoint, we are both thrilled that her surgery isn’t happening so she has time to grow more but after psyching ourselves up all weekend, preparing ourselves for this, to hear it’s going to be delayed is a bit frustrating.   From a Sean standpoint, I’m having a lot of frustration.  Don’t get me wrong,  if delaying the surgery for a week or a month or a year is the best thing to do, absolutely let’s do it.  Who knows maybe she’ll keep breathing well enough that she can put this off for years.  It’s a matter of we keep hearing “she needs this surgery” and then it gets put off.   I keep thinking the word “need” indicates survival.  Well hopefully it gets put off for a while and we can put it off for a long time.

Caleb & Elijah are both on the CPAP and doing great.   Abigail is still holding strong.  We have held her the least which is also another real sore point for us.   Since she is so reliant on the ventilator,  it is hard to be there at a time that is good for her in order to hold her.

Today we learned how to do massages on them.  This is crucial because they are poked and prodded so much that they need to have their hands, feet, bellies, and faces massaged so that they get good touches and aren’t afraid of the nurses and doctors.

Tomorrow is our anniversary.  I am so thankful for my wife.   Life did not turn out the way we planned it.  Every day there is a new twist and turn.   I am glad that God changed all of our plans.  Maybe one day we will finally get to take that honeymoon to Oregon.  If not heaven will be more beautiful than anything we can imagine here on earth.  You are an amazing wife and you love our babies so much.  You do so much for them already including spending a month in the hospital for them.  I know that when the kids finally make it home you will be a super mom.  You are a wonderful example to me.  I love you.

posted by Sean