Sunday, May 20, 2012

Freedom, Sweet Freedom

Busted out of Northside this morning.  Was not sorry to see it in the rearview mirror.  Told husband to hope against hope that it was our last trip to that particular exit for many moons.

First stop was Starbucks (naturally) and second stop was Egleston.  We hijacked a wheelchair from the parking deck, and my sweet husband wheeled me to the NICU.  Along the way, he banged my elbow against the doorjamb twice, at once causing me to double over in laughter and searing pain from my incision.  We arrived in the unit to be told, quite sweetly, by the desk lady (who had watched this all go down on video) that perhaps next time he might enjoy the use of the automatic door opener buttons.  We do not do anything easily here at the Knolls'.

He wheeled me through the dark, quiet space until we reached my ultimate goal:

Sing it with me, "Reunited, and it feels so goooooooooood..."
So so so so pleased to see my P-nut.  He had a nice quiet night, which is the best news to hear.  I met his wonderful care team, and his new friend Dr. Williams.  She ran me through his current status, and I tried very hard to pay attention.  Mostly I rubbed those sweet lil' chicken legs and I'm not sure if this is entirely accurate, but it's close:

1) Operation Heal Parker's "Package" continues to progress.  Cathether is placed appropriately, and his urine output is super and is clearing up rapidly.  There is still some bleeding, which is to be expected due to the blood thinners required by ECMO.  She showed me his little winky, and it looks quite awful.  It looks worse than it is, it's working just fine, and in the grand scheme of things is not a real concern at this point. 
2) He has had 3 consecutive days of clear cranial scans, which translates to no brain bleeding. (hooray!) She feels that his brain is just fine, thankyousomuch, and doesn't require any more scanning until closer to off-ECMO day.
3) Off-ECMO day will probably be next weekend/early next week.  He is currently on a setting of .310, and she's like to see it down to .200 pretty soon.  You could ask me what that means, and I could make up something, but it would probably have to do with the number of elves living in the machine to make the motor turn.  All I know is that his settings have gotten to go down each day, and he's maintaining pretty good status, and that's that.
4) His x-rays today showed improved right lung size and decreased intestine volume.  Both of these are excellent news.  As the stomach and intestine shrink down (they constantly suction air and gook out), there is more real estate available for lungs and heart.  We need those to grow as strong as possible before his repair surgery.  There is some pulmonary hypertension, but that's expected and it's not too bad just now.
5)  His blood pressure continues to be the sticky point.  He's trending towards the low side (just like his mama), and every so often will just bottom out and make his bells ring.  Nobody can determine what pattern he is following, and his nurses have determined that he just likes to keep things interesting.  It's not alarming, as his dips are never real big, and they are working on his dopamine to get him to level out.  Stinker.

Sweet Dr. Williams gave us the "the prognosis for CDH babies is 50%" speech today.  Still, she said *ever so hesitantly as these things can change at the drop of a hat* that based off of what she sees right now, she feels pretty darn good about Parker's progress.  We are lucky, because due to some wacky rotation, she will be our doctor for the first 10 days of Parker's life.  She is very familiar with his situation, and can see him through most of his ECMO run without having to hand him off to someone else.  She was so very kind and I have no doubt she is doing great things for my little man.

I also met several of Parker's nurses today-- both bedside and ECMO.  They are just the nicest darn people.  I went in there all terrified of what I was going to see and prepared to fall on the floor sobbing.  Within seconds, Mike was welcomed like family and I was quickly fussed over to be sure I behaved as a 2 days post-op patient should.  They walked me through each and every bit of equipment, explained all the 8000 screens staring at us, and told me how cute my baby is (which we all know is the most important thing).  Not one time did I feel overwhelmed or scared or weepy.  Even when it was time to go, I was okay because I really feel like Parker is in tremendously capable and caring hands.  This whole NICU business is tricky, and we haven't had any real yucky moments yet (I know they will come eventually), but I can feel God's grace carrying us right now.  Really and truly.  I got to see my P-nut today, and I am reunited with my sweet Jeremiah.  I just had storytime and prayer time with him, and my heart is full to bursting.

*my belly is also full to bursting, as today was move-in day to JeanJean's Bed and Breakfast.  I swear to goodness the woman has bought out every grocery store within 10 miles and will not let us leave here until we have all gained 30% of our body weight.  We are so grateful that she let us take over her home so we could be close by Parker this week. Love you JeanJean!*

Mike will be back soon from his night-night visit with Parker.  I just sent a note to Megan from Krispy Kreme with Parker sporting his Happy Hat.  Life is good.

"Your works are wonderful, I know that full well."
-Psalm 139:14


  1. Yeah from Washington. We are praying for you guys daily. Thank you for all your encouragement as we were in the hospital with Esther. So glad to hear how you guys are. I love that you feel the peace of the Lord. I lost it the first time I saw Esther on ECMO. God is going to keep carrying you daily.
    Rhonda and Jason Holtrop

  2. Abby I think God gave you a secret weapon to help you through the days ahead. A sense of humor and finding the positive in the situation. Keep drinking from that half full glass it will get you through the tough days and make the good day awesome!

  3. I love your posts! You have such a great sense of humor! It sounds like Parker is doing great! Good boy!!!! I remember seeing my baby girl for the first time like it was yesterday. I too was very calm and just took it all in. It's amazing how much strength you have that you never thought you would! Many prayers for a good day today and a smooth transition off ECMO when the time is right!
    Mom to Dakota 12-25-2008
    RCDH/ECMO survivor (perfect 3 1/2 year old today)