Thursday, August 25, 2011

A Praise and a Prayer Request

Wednesday was a very eventful day at our house.  As I said in the last post, Henry and Harper both had doctor visits in Memphis.  Mark and I, in our naiveté, had envisioned the day a little differently than it went down.  For one, we had hopes of stopping by the 4th floor of Le Bonheur, since we were already at the hospital, to say hello to all of our friends that we so dearly miss.  And two, we had hoped for a better report for Henry.  Needless to say, our day did not go as we planned.  But of coarse, we have learned through this journey that our plans are not always the best.  All was not lost though, we have a HUGE praise for our sweet Harper girl!

With two babies, whom we have never traveled with at the same time, my nerves were already frazzled by the time we arrived in Memphis at 8:30.  Yes, did I mention that I'm INSANE and scheduled Henry's appointment at 8:30 a.m.??  His appointment was with the pediatric pulmonologist.  Mark and I were hoping that this visit would give us some information as to how Henry's lungs have progressed since we left the NICU.  Mark and I were a little disappointed when a completely different doctor than the one we saw in the NICU came into the room.  Mark and I both felt like this visit was more like a "new patient" visit, rather than a follow up.  So, we were a little frustrated from the start.  Not to mention we had to wait an hour in the waiting room only to be taken back and wait another hour.  Wow, am I the complainer or what?!  :)
  We had a list of questions for this doctor, and he didn't seem to really answer any of them.  What we did find out is that Henry's oxygen saturation was a little lower than we would like for it to be.  The doctor said this concerned him.  He said he felt like Henry could possibly have pulmonary hypertension.  We also found out, thanks to our sweet pediatrician who had to call and hunt down these results,  that his blood gases have gone up.  All the more reason this new doctor feels as though Henry could have pulmonary hypertension, in addition to chronic lung disease.  We are scheduled to meet with a pediatric cardiologist Monday for more testing.  Poor baby, his whole life has consisted of being poked and proded.  As of now, it is looking very likely that Henry will have to be placed on oxygen again.  To what extent we don't know.  Please, please keep our little man in your prayers.  We are just praying so hard that this blood gas was just a one time thing, and that the next one will be normal.  We are also praying that the tests he has done at the cardiologist visit will all be normal and will rule out pulmonary hypertension.  While we were there, the new doctor did make appointments for us to meet with a GI specialist because Henry's reflux seems to be getting worse.  I am looking forward to this visit because I am ready to get his reflux under control once and for all.

Our HUGE praise is that Harper girl's eyes are fully vascularized!!  Praise God!!  At her last visit, one of her eyes had an area that had not even started to vascularize.  The doctor told me that day that I didn't need to start worrying yet.  Ha!  You can't tell a mom that!  But, turns out she was so right, our little Harper girl's eyes are great!  We go back with both of them in December, but that will just be a routine follow up visit.

I keep telling myself that God has gotten us this far, and that I have so much to be thankful for, but it's really hard not to get discouraged after a day like this.  Henry has been doing so good at home, or so we thought.  He is just the happiest little baby.  I mean, he smiles all the time.  You would never know that he is sick.  The doctor did tell me, again, that we must keep him isolated during the RSV and flu season.  Henry has come too far to let something like that be the thing that sets him back.  Or worse, but I can't even go there.  I guess this doctor's visit was just a wake-up call for Mark and me.  We've sort of become relaxed about his health.  He was doing so well that it was sort of easy to forget just how sick he still is, and just how far he has to go before he is truly well.

God continues to pour out his blessings on our little family.  NOTHING is impossible through Him.  His plans are far better than anything I could plan or even imagine, so we are just resting in that promise, and just asking you to please keep him, and Harper, in your prayers.  We are so grateful for those prayers, and for the love that our friends, family, and strangers have shown us!  God is good!


This is what Harper thought about getting up so early!  No smiles whatsoever!

Sweet little man in his firetruck outfit

Always smiling...

except when mommy tries to get a cute picture!

Eating our lunch in the car!  Exhausted after only a few hours in!

2 comments:

Robin said...

BJ and Mark, Love reading updates on the twins. I know you can sometimes become discouraged on this roller coaster that we see everyday with our NICU babies, but remember someday all of this will be a far off memory. They look great as I knew in my heart they would. Dueteronomy 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you or forsake you."

Tiffany said...

They are just adorable Bj!! I still think about yall all the time!! Please let me know what all the doctors say! I will be praying that all the tests come back good! Let me know what your GI says...we need help too! I swear I want to CURE reflux!!!! Its so terrible!! Kiss those sweet babies for me!!!! can't wait to meet them one day!! Love, Tiff