Roller Coaster Rides are Overrated

This is Harper’s daddy writing to you by force of Harper’s momma.  Let me catch you all up to speed.  As you know Wednesday night Harper was put on CPAP (which is basically a pressurized breathing mask that has been a thorn in my flesh) and breathing treatments, and by Thursday morning her lungs were looking much better.  A cardiogram was performed on her heart to see if there were any problems with the heart which could be causing, or at least contributing to, the lung problems.  Her aortic valve before and after the surgery had a small amount of leakage, which is why the surgery was performed.  The echo cardiogram showed that there was more leakage than before and was definitely contributing, if not causing, the lung failure.  The lungs and the heart are tied closely together and if there are problems with the heart, such as a leaking valve, then the lungs will suffer as well.

So what caused the greater leakage in the valve?  For the surgery, the doctors had to go through the valve to remove the tissue that was causing the problems.  The tissue removed came right up underneath the valve and after the tissue was removed, the geometry of the heart was changed.  You can imagine the swelling and shock her heart must be in and so these factors are most likely the cause of the new leakage.

The plan of action decided on Tuesday morning was and still is to put Harper on diuretic medicines to get rid of the excessive fluids in her body and especially her lungs.  They also put her on other medications to make the heart pump more effectively and efficiently.  Then we watch and wait to see if her heart will settle down and the valve will work like it did before and right after the surgery.  How long we wait, we do not know.  The doctors are confident that the condition can be treated with medication and without further surgery, which is of course a big relief.  Just keep praying for my sweet baby.

Yesterday, Harper showed signs of improvement.  The fluid in her lungs decreased significantly and she was awake for small periods of time, but with very little energy.  She was taken off the CPAP during the day and continued the breathing treatments, while at night was placed back on the CPAP.

Amy and I try to take shifts with Harper at night and I had the early morning shift.  She woke up and they took her CPAP off and put in the oxygen nose deals (pardon the lack medical terminology but what did you expect?) and looked much better but made no sounds and just looked at me with her big sad blue eyes.  When Amy came in, Harper immediately started crying and was not satisfied until I was replaced by her mother in the bed next to her.  For the next two hours Harper gave us an ear full, not really crying but just letting us know that she was there and was not too thrilled about her current situation.  It was music to my ears because I knew we had reached a turning point.  Harper has been slowly improving today, although she is far from being where we want her to be, so please keep praying for her and for Amy and me.

This, as expected, has been nothing less than heart breaking, to see my little Popper in such pain and has certainly been a torturous roller coaster ride that we have no idea when and where it will stop, which is almost as bad as seeing her in pain.  If you have babies, do me a favor and give them a kiss the next time you see them and lavish in their spirit and energy for it is one of the pure and delightful things in this old world.  Tonight I miss my spirited and energized boys and wish I could kiss them and I miss my Harper, the one who scoots across the wooden floor and squeals as she chase after her brothers. Goodnight, my sweet babies and hopefully we will all be together soon.