There is a Light at the End of the Tunnel

One of my close friends recently asked me how I ever get anything done these days, and without even thinking, I bluntly replied, "I don't."  Things that I used to accomplish in a mere five minutes now take a few long weeks.  Case in point, I've been wearing the same contact lenses, which I'm supposed to change monthly, for the past 3+ months...don't tell my optometrist:)  Blogging falls into the same category.  I have the best intentions of writing, but it rarely happens.  Needless to say, I apologize for not updating about Reid sooner.

Reid was finally switched from the high-flow nasal cannula to the regular nasal cannula.  Same idea, but the oxygen is no longer humidified and the cannula prongs and tubing are thinner.  He was easily weaned to 1/2 liter per minute of oxygen...in other words, he is only receiving a scant amount, and we're not even sure if he needs that.  As of now, we are thinking that he will most likely come home on the cannula, which I'm sure George Michael (our dog) will have a field day pulling on:)  Additionally, now that Reid is on the regular cannula, he no longer receives his nebulizer Albuterol treatments through the cannula.  He now has the pleasure of wearing a mask every eight hours.  We have had great debates with the respiratory therapists about the type of animal that adorns the mask, and we've agreed that it is a purple dragon.  Reid appears to be mesmerized by the fumes that escape the sides of the dragon and surprisingly remains still during treatments.

Close-up of nasal prongs

Purple dragon, turkey, or fish??

In the feeding arena, Reid recently was switched to NG (nasogastric) feeds.  After careful consideration, the attending neonatologist decided to try pulling his ND (nasoduodenal) tube and start full feeds in his stomach.  We were unsure how he would tolerate the feeds in his stomach because he has only been fed  intravenously or in his intestine since birth.  The little guy continues to surprise the medical professionals...he did great with the change. Reid started continuous feeds (28 mL every hour), and now they are tackling condensing the feeds.  As of now, he receives 90 mL over two hours and then has an hour break.  Bryan and I are becoming quite the pros at pulling back the residual from the NG tube and checking the pH to ensure that the tube placement is in the stomach and hasn't migrated into the lungs.  The nurses also have relinquished the job of setting up Reid's feeding pump and hanging his milk to me and Bryan.  This is in preparation for his homecoming.  Bryan and I enjoy the responsibility and have fun calculating the dose and rate...we're big dorks!  Reid is continuing to p.o. feed (take a bottle) two to three times a day, and some days takes more than others.  I feel like he often stares at me thinking, "Mom, why are you shoving this bottle in my face.  I'm being fed through a tube and never feel hungry.  The bottle is a lot of unnecessary work!"  But, we continue to persevere...

I am happy to say that our son is no longer on ANY pain/anxiety meds!  The wean was such a tedious process, and it was very hard to watch our baby show signs of withdrawal. The nurses,  Bryan and I made sure to give Reid lots of extra loving when he was weaning, and I am so glad that those days are behind us.

No more pain meds! 

Weight check-in...the little chunky monkey is making up for the first few rocky months when weight gain wasn't a priority and is packing on the ounces.  He has reached a whopping 10 lbs. 14 oz.  His torso remains pretty skinny, and he continues to have pretty long legs, but we think we've noticed some tiny fat rolls on his thighs.  His one piece outfits are starting to look like capris instead of pants:)  I guess it's time to move up in size:)

Growing by leaps and bounds

Last, but certainly not least, Reid's CDH buddy (who had repair surgery on the same day as him) was discharged a few weeks ago.  Over the past 4 1/2 months, we've grown very close to the family and are so grateful to have met them along this journey.  We've shared tears, joys, and lots of frustrations with each other and couldn't be happier that their little girl is where she's supposed to be...home!  We're looking forward to sharing all of the successes of our "fighters" for years to come.

This Week in Reid Review 1/2-1/8

Slow and steady wins the race.  Isn't that the moral of one of Aesop's fables?  Reid is teaching us this lesson whether we want to learn or not.  The only changes that were made this week were weaning sedation and ordering p.o. feeds to start.  Reid is currently on one last sedative (Ativan) that works as an anti-anxiety medication.  He was started on this medication prior to surgery to alleviate anxiety related to the stressful procedure, and they continue slowly to wean him.  In doing so, they have to keep a close eye on withdrawal symptoms and give him a wean score throughout the day to monitor his response to the wean.  Who knew excessive sneezing was a sign of withdrawal for infants?  Reid has been handling the weans, and we hope that they become a little more aggressive in attacking this last pain medication.

The other exciting change for the week was the "official" order to start p.o. (fancy latin term,  per os, meaning "by mouth") feeds.  This past Tuesday, we were given the green light to give Reid two bottles a day.  Our speech therapist provided consultation, observed Reid, and listened with her stethoscope as I nervously stuck the bottle in his mouth.  She was very impressed with Reid's sucking, swallowing, and breathing and deemed him a "safe eater."  She didn't observe any signs of severe reflux or aspiration and was surprised by his coordination of skills for being a rookie- little did she know that he had two previous bottles to hone his abilities:)

Bryan takes his turn at giving the bottle

Although Reid's homecoming isn't in the immediate future, I thought it was time to organize his nursery at my parent's house.  So my mom, Bryan, and I set out to do what my mom, Bryan, and Bryan's aunt did back in sunny June- paint the baby's nursery.  Although this time, the painting wasn't done in our rowhouse in Baltimore, but in the house I grew up in in Pennsylvania.  Sadly, Reid will never see his beautifully painted room in Baltimore...a room I walked into many times after his birth and sat on the floor crying tears that we would never bring him home, a room where I often closed the door because I couldn't stand to think of what I was going to do with all of the baby shower gifts that sat unopened in heaping piles on the floor.  Now, I can think ahead to the day when we bring Reid home, and it feels good to be able to do the "nesting" that I never was able to do before Reid's birth.  The painting went surprisingly well, but the project wouldn't have been complete without a few debacles- not enough paint, splattered paint on the ceiling, drips on the floor, and the clumsy foot in the paint tray (I'm not going to name names, but it wasn't me or my mom:)).  We have a few finishing touches, and then the room will be all set for the little man's arrival...that day can't come soon enough! 

Last event for the week- I turned the big 3-0.  When I was little, I always thought of 30 as old- you know, mom age, mom jeans, and mom haircuts.  Now, that's me,  I'm mom age minus the mom jeans and short haircut...I'm trying to steer clear of those things for life.  I couldn't be happier to be the mom of such an awesome kid...he's been through more in his short life than I've experienced in my 30 years...pretty incredible! 

Birthday play time:)

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