This Week In Reid Review 12/18-1/1

Well, it's really the past two weeks in Reid review...you know how the holidays go, we've been so busy trying to make the season as "normal" as possible, and I completely lost track of time.  Here goes...

The last two weeks began with a somber start.  One of my best friends and a big Reid supporter came to visit for the first time.  After helping me change a dirty diaper (she has lots of experience with 3 children of her own), we sat and chatted with Reid lounging in the boppy on my lap.  As we were laughing about the unsolicited parenting advice she received earlier in the week, I heard an alarm that was all too familiar- the code bell.  Just as I was trying to calmly explain the meaning of the alarm, I realized that the code was being called on the baby directly next to Reid.  Within a matter of seconds, the room was flooded with nurses, respiratory therapists, and neonatologists...and there we sat with Reid looking confused and worried in my lap.  My friend and I dissolved into tears, and a nurse quickly wheeled a curtain over to shield us from the team trying to stabilize the little guy.  The sound of the alarm and the rush of medical professionals transported me back to the days when Reid was so sick and his bed was the number that they were calling over the intercom.  Days that seem like the distant past, but also like they are just yesterday.   Days that we never want to return to.  Although I didn't want my friend to witness a NICU emergency, I was so glad not to be alone with Reid when the dreaded bell sounded.  Unfortunately, that baby continued to code throughout the weekend, and Bryan and I walked in to see an empty bed spot next to Reid on Monday morning- there is nothing like that situation to put things in perspective and show us just how very lucky we have been in a very unlucky situation.  That could have been Reid on numerous occasions, and my heart goes out to the baby and his parents- the baby fought a good fight. 

On a more uplifting note, Reid was completely weaned from Remodulin (pulmonary hypertension med) on the Sunday before Christmas.  Consequently, they were able to remove his PICC (central catheter) 48 hours after he was off the vasodilator.  Reid handled the bedside procedure like a champ.  The nurse didn't even have to use sweetease (sugar water used in painful procedures) to assuage the discomfort.  I assisted by holding Reid's wiggly leg down as the nurse carefully pulled the threaded catheter out of the pin sized hole in his ankle.  I was amazed at the length of the catheter.  The nurse practitioners were amazed that Reid had the line in for 139 days and never developed an infection- pretty unheard of.  One of the nurse practitioners mentioned that Reid must have an angel on his shoulder...something we've known all along:)  Kudos to the nursing team that kept the line dressed and clean despite Reid's attempts to pee all over it!   

PICC line still in

Removing the PICC

"Look Mom, no PICC!"

After the PICC line was removed, Reid's leg was completely free which meant that we could finally give him a full bath instead of a modified sponge bath (the PICC line couldn't get wet).  One of the nurses filled a small basin, and we dunked Reid in the sudsy warm water. He loved having his body submerged and looked as though he was lounging in an inner tube at the beach- the only things missing were some sunglasses, a bathing suit, and a chilled cocktail:)  After his bath, we gave him a lotion massage, swaddled him tightly, and he was out like a light in Bryan's arms.  We've given him a few baths since, and he enjoys the water (he's got it in his genes) and seems completely content afterward. 

Completely content in Dad's arms

Tubby time!

Christmas brought lots of visitors- some regulars and some from across the country.  Reid loved the new faces, and Bryan and I loved the diversion from our typical daily routine.  Reid had one of his and our favorite nurses on Christmas Eve and Christmas Day, and she surprised us with his first handmade (more like footmade) ornament- two of the nurses painted Reid's feet and somehow managed to get two perfectly shaped footprints.  It's the small things like that that mean so much to me and Bryan and help us get through the difficult days in the NICU.  On Christmas Eve, one of the more daring nurse practitioners gave Reid the present of another bottle!  This time, it was a whopping 7 ml (more than double what he was given the first time).  Once again, he sucked it down, didn't vomit or show signs of reflux, and conked out immediately after the last drop.  We're continuing to hope that this is a sign that Reid will tolerate gastric feeds and the process will be expedited.  On Christmas, we squeezed Reid into his Santa costume (courtesy of his Gramps and Donna) and although me, Bryan, and the nurses had a good laugh, it took Reid a little while to warm up to the velvet getup.  Merry Christmas, Reid!    

Grumpy Santa

Jolly Santa

"Alright Mom and Dad, I'm getting tired of pictures!"

In terms of more technical business, Reid is currently receiving 2 liters per minute of high flow (humidified air) through a nasal cannula.  Once he is switched to 2 liters on the regular cannula, they will begin gastric feeds.  They have yet to determine if they are going to bite the bullet and pull the feeding tube that is in his intestine into his stomach or add another feeding tube into Reid's  belly and slowly increase the volume of feeds in his belly as they decrease the amount in his intestine.  Such a delicate process.  Additionally, Reid's full feeds have been adjusted for his weight and he has reached the 9 lb. mark!  I think he's gaining all of his weight in his double chin because he still has chicken arms and legs...I think we're going to have a string bean on our hands. 

Look at those chicken legs!

Reid laughing his head off as Bryan tickles his double chin

Bryan and I rang in the New Year at our home away from home, CHOP.  We had a very exciting and happy ending to a difficult year...my brother and sister-in-law welcomed a healthy baby boy, Vincent Thomas,  into the world on New Year's Eve.  We couldn't be happier, and Reid can't wait to meet his "cousin Vinny":)  After the exciting baby news, we enjoyed a great dinner with my parents , toasted at midnight with sparkling cider (brought to us by the awesome nurses), and were treated to a hotel room in Center City.  All in all, it wasn't our wildest New Year's Eve, but it was pretty darn good.  Bryan and I will forever remember 2011 as a year that drastically changed our lives....we never thought this is where we would be a year ago, but we wouldn't want to be anywhere else.  Looking forward to what 2012 has in store for us! 

Last picture of 2011

Slept right through the ball dropping