It takes a village...

I always heard this saying and understood it's meaning, but never has it applied more to my life than now.  To be honest, at the beginning of this journey, it was difficult for me to accept help from others.  Looking back, I think that I wanted to feel like I had everything under control even if I knew deep down that everything was completely out of my control.  After slowly coming to the painful realization that Bryan and I could not get through this on our own, we were able to let people in.  In November, we visited our best friends and their adorable daughter in Northern Virginia, and they pitched the idea of throwing a benefit.  After a few tears (of course, on my part), Bryan and I put aside our pride and accepted their gracious offer.  Little did we know what an amazing event this small idea would turn into.  Five months later, our friends, family, friends of our family and friends, and mere strangers joined us for a night to celebrate the most important person in our life, Reid.  This night was like nothing I've ever experienced, every last detail was thought through (from the flowers, the wristbands, the expertly printed program outlining the auction items, the colors of the balloons, the awesome logo, the placement of the auction items and tables, and the incredible slideshow that highlighted Reid's progress).  Needless to say, the event went off without a hitch.  I cannot even begin to imagine the time and energy spent planning such a fantastic benefit, and I cry thinking that this was all done for the love of our son (tears flowing right now).  To say "thank you" doesn't begin to capture how appreciative Bryan and I and our families are for all of the support and love we felt on April 21st.  Throughout this experience, we've learned the true meaning of "it takes a village," and Reid is thriving because of his village.  Our sincerest gratitude for everything that went into planning such an amazing event and for everyone who came out or contributed to celebrating Reid's life...we will forever be thankful.

Long overdue...

I'm a very goal oriented person and throughout Reid's NICU stay, my main goal was to bring him home (and stay sane throughout the process)!  After this goal was attained, it took some time to settle into life at home and I completely forgot that people may still be interested in following his progress.  So, for those of you still interested in Reid's journey, here are some highlights:)

The first week home was quite an adjustment for all of us (Reid, me, Bryan, my parents, my grandfather, and of course, George Michael).  Bryan was able to take off a few days to help out, but reality quickly set in once he returned to work.  After the first week, I remember thinking, "Oh my god, how am I ever going to do this?!"  I felt so constricted already...we are pretty much on house arrest until the end of flu season and even within the house, it's not the easiest to transport the little guy.  To bring Reid from his room to the first floor, I have to unhook him from his pulse ox monitor, take the monitor downstairs, fill his portable oxygen tank, unhook him from his primary tank and hook him to his portable tank...something I now have the hang of and can do pretty effortlessly.  Needless to say, I can't just pick him up to run downstairs and throw a load of laundry in or put him in his carseat to run a quick errand or pick up my favorite cup of WaWa coffee.  At the end of the day, Bryan would come home from work and I would be changed into my gym clothes ready to hightail it out of the house to get the golden sixty minutes to myself with my headphones and the eliptical.  Luckily, now that we have a routine down, I feel much more in control.  Reid settled into a great schedule of taking three naps throughout the day (although they're pretty short) and going down for the night between 6-7, which I obviously can't complain about.  His naps coincide with his feedings which works out well because it's easiest to do his feeds in his room with his feeding pump so that we don't have to use the portable pump too much.  In between naps, we play and read books on the floor of his room, play on his playmat downstairs, go for walks (the recent warm weather has been a godsend), and take baths every other night.  He's such a content boy and is becoming more and more animated and verbal each day.  He talks up a storm (sometimes it's more like yelling), especially right before bed....apparently he has lots of stories to tell!

Reading on his favorite cow pillow

Smiley boy

Playing with dad

We've been back to CHOP two times since we've been home and it felt a little strange to go there for appointments and not to spend the day in the NICU (although we definitely squeezed in a NICU visit to see some favorites).  The days were jam-packed with specialist appointments and it was nice to see all of his doctors on the same day so that we don't have to make numerous trips into the city.  The overall consensus is that he is gaining weight pretty darn good at home...he most recently weighed in at 14 lbs. 6 oz (two weeks ago)!  Not too shabby for starting out around 3 lbs.!  The Pulmonologist was happy with how clear his lungs sound, but no clear plan to wean the oxygen just yet.  No rush, right?!  His surgeon looked at his scar (which is fading quite nicely) and did a physical check for scoliosis, which is commonly associated with CDH.  Just from feeling his spine, she said that he doesn't have obvious signs of scoliosis at this point, but he will continue to be monitored.  In the area of nutrition, he's still being fed exclusively through his NG tube, which he developed the skill of pulling out on an every other day basis until we finagled a tape job that keeps it secure.  We were debating wrapping duct tape around his head...last resort:)  Ugh...sticking a tube down your child's throat doesn't get easier with practice, but Bryan and I work pretty good as a team and we are becoming more efficient at it (even if I end up in tears).  Reid is still experiencing some pretty severe reflux, so his dietitian tweaked his formula concoction and added microlipids.  So far, the new formula recipe has alleviated some of his vomiting, but hasn't eliminated it altogether. I don't know who's happier, Reid or George Michael (unfortunately, George Michael's back was sometimes the target of Reid's spit-up).  The dog has definitely become stinkier since Reid's homecoming:)  

GM in the line of fire!

Finally got the NG tube secured...thank you white tape:)

Developmentally, we are working hard to make up lost ground...being a preemie and spending 6 1/2 months in the hospital isn't the most ideal way to start out, but we accept the challenge:)  I had heard accolades about Chester County's Early Intervention Program before Reid was born and so far, they have lived up to their name.  I had Reid assessed the week we were discharged from the hospital and he qualified for weekly physical therapy and monthly speech therapy.  Physical Therapy services have been provided for three weeks and he has made noticeable progress already.  I look forward to our sessions and the therapist is great about giving us a variety of exercises to work on throughout the week...think baby boot camp:)  We've recently introduced a yoga ball and baby surf board into the mix which is fun for mom and Reid.  At this point, Speech Therapy is working on preventing oral aversions which requires me to play in Reid's mouth with my fingers...luckily, he doesn't have teeth yet because he has a strong bite!  Although sometimes I feel like progress is slow, every little gain amazes me when I think back to Reid's rocky beginning.  One thing I've learned is to never doubt this little guy.  For now, we persevere...

Working on sitting

Tummy time on the bed...change of scenery

Home Sweet Home!

Well, this is the post that I've been waiting 6 1/2 tiring months to write. Since the day Reid was born, my 93 year old grandfather, who also lives with my parents, has not gone a day without asking us, "How's the baby doing?" I always tried to keep my composure when responding, but there were days at the beginning when the utterance of this simple question would bring tears to my eyes...how do you tell someone who doesn't understand the gravity of the situation that the baby may not make it and that he may never meet him? After Christmas, he added, "When are you bringing the baby home?" to his daily repertoire of questions. Not knowing ourselves when the discharge date would be, I subjectively picked a memorable date for him and replied, "Hopefully, by your 93rd birthday," which was February 16th. Well, I was five days off...Reid was discharged from CHOP on February 21st and was able to meet his great-grandfather for the first time, a day that I will never forget.

For the past month, we've known that the surgical team was aiming to discharge Reid on February 21st, but we've also been in the NICU long enough to know that discharges do not always go as planned. So, of course, Reid's discharge would not be complete without a slight snafu. Even though we had a month's notice of discharge, the few days leading up to the actual day were a whirlwind of meetings with the home nursing company (we were approved for 12 hours per day of home nursing care), the discharge coordinator, and the home care company (which supplies all of the medical equipment to the house). In order to make discharge a reality, Reid's dedicated nurse practitioner, who admitted him on the day of his birth and has been his primary NP throughout his NICU stay, worked diligently to complete his discharge paperwork. It may have taken her the whole month, but she was able to succinctly summarize his complex medical background into 12 short pages...no small feat. Everything was in order and discharge was supposed to be easy...we arrive, pack up Reid, say our goodbyes, and we're on our way.

Enter snafu... on the morning of discharge, the home care company dropped off Reid's liquid oxygen tank, which resembles R2D2, and trained us on how to use it and how to fill his portable tanks. Bryan and I then packed up the stroller and headed into Philly...a trip that I could make with my eyes closed, and for those of you that know me, know that I am not the best with directions:) We arrived at CHOP and in talking with the discharge coordinator, we realized that the home care company couldn't drop off the feeding pump and supplies until after 6 in the evening. This meant that we had to stay at the hospital until after Reid received his 3 o'clock feeding...making departure time more like 4:30. Although this news was initially disappointing, it actually worked out for the best...we were treated to a great lunch at our favorite local restaurant (thanks Rich and Donna) and were able to say our goodbyes without being rushed. After lots of hugs and tears on my part, we donned Reid in his coming home attire, carefully placed him in his car seat, and said our last goodbye to his amazing nurse...a nurse that has had him a lot through his good days and bad and truly loves him. As we walked out of the wing that we called home for the past 203 days, it was bittersweet. We ran a gamut of emotions as our hospital bands were cut from our wrists and we walked through the NICU doors for the very last time. We were free...I knew that I should feel happy, and I did, but I also felt an overwhelming sense of sadness.

 

Thankfully, the car ride home was pretty uneventful and we miraculously missed rush hour. We amateurishly maneuvered all of Reid's equipment into the car and somehow stuffed all of the goodies that the nurses sent us home with in the trunk...think diapers, bottles, and medical supplies galore. I took the wheel (control freak that I am) and Bryan sat in the back next to the little man. Bryan gave me minute by minute updates as I fought away tears and cautiously navigated our way home. This may have been the first time in my life that I consciously made sure that I was not exceeding the speed limit or yelling expletives at the crazy drivers on 95. Reid sat quietly, glanced out the window, and fell asleep within 10 minutes of our departure. We made it home in one piece and Reid calmly adjusted to his new environment, accepted the doggy's kisses, and won over his great-grandfather's heart. Shortly after arriving, the flurry of people started to arrive- the coordinator from the home nursing company, the nurse from CHOP home care, and our night nurse. Thankfully, Reid continued his nighttime routine of falling asleep slightly after 6 and we were able to work out the nursing logistics and complete the necessary paperwork. Needless to say, after the physically and emotionally draining day, Bryan and I were exhausted and starving. Thanks to my second set of parents, we had a yummy fajita dinner waiting for us:) Reid had a successful first night and slept his normal 12 hours; however,unfortunately, Mom and Dad cannot say the same thing.
 













Highlights from the first week at home:
Bryan, George Michael, Reid, and I went for our first "family" walk around the block. Reid appeared completely content with the sun beating down on his face and a bit surprised by the cool breeze that blew by. We made it about halfway around the block and he was out like a light...eyes closed with a slight smile on his face...priceless!

I wasn't sure how I was going to do it, but we made it to Reid's first pediatrician appointment and it wasn't as stressful as I anticipated. Luckily, my mom took off work that morning and helped me transport the little guy...he sure comes with a lot of accessories:) My mom dropped us off at the front door, and I walked into the well visit waiting room equipped with an oxygen tank, two monitors, a diaper bag, stroller, and baby. I changed Reid immediately before leaving for the doctors and thought that I may make it through the appointment without having to change a diaper...wishful thinking. He pooped as we were sitting in the waiting room...awesome! When I took him back to the patient room, the nurse instructed me to get him naked so that she could weigh him, take his head circumference, and get a length. I did my best to appear like I had everything under control and somehow got him out of his poopy diaper and naked without a cry or without the monitors beeping off. Good news- little guy gained 4 ounces since his last weight at CHOP. Bad news, they had to give him his flu vaccine and he later developed a slight fever, but nothing that a one time dose of Tylenol couldn't fix.

We are enjoying doing "normal" baby things with Reid and spending time as a little family. George Michael has surprisingly been very gentle and loves licking Reid's hands and feet; however, sometimes he confuses Reid's toys with his own...who can blame him, baby toys and dog toys look very similar. We're looking forward to settling in as a family and couldn't be more thankful for the gift that Reid has become.

 

"Baby Steps"...

seems to be the motto of this journey and quite fittingly the title of the NICU's discharge checklist.  About a month ago, Bryan asked the attending neonatologist, "Hypothetically speaking, if you were to give a date for discharge, what would it be?"  Not expecting a straight answer, the doctor pondered the question, did some quick math, and replied, "February 21st."  In asking how she came up with the date, she said, "Very subjectively."  We took the answer with a grain of salt; however, it has put some fire under our *** to get things organized at home for the transition.  It seems like the surgical team is doing everything in their power to make the February 21st goal a reality.  In doing so, we've had the pleasure of checking things off our "Baby Steps" discharge checklist...doesn't it always feel so great to check things off a list, no matter what kind of list it is?!  We've taken baby CPR (back in September thanks to a very hopeful and ambitious nurse:)), taken our feeding tube class, both Bryan and I have placed the feeding tube, and we've selected our pediatrician and scheduled our first appointment.  Last few things to check off include being trained in drawing up Reid's meds, mixing his fortified formula, and completing the car seat test (basically, Reid will have to sit in his car seat for the length of time of our car ride home from CHOP, and they will monitor his vitals and oxygen saturation levels throughout).

Mom's tube placement- nice tape job, Dad!

No feeding tube and you can see my serious scar:)

  



Let's see...changes since the last post.  In the last week and a half, we've been tying up loose ends, and I feel like Reid has seen every specialist there is to see.  He had an MRI of his brain to gather baseline data, as well as monitor any brain bleeds which are very common with premature babies.  To complete the MRI, the team first talked about putting Reid in an immobilizer to contain his movement...it sounded like an inflatable blanket.  However, they quickly decided against it because of how active Reid has become.  Therefore, they had to sedate him, which meant placing an IV and giving him rescue doses of the sedation medication...thankfully, they were one time doses, and we didn't have to worry about weaning him from the meds again.  While he was sedated, the team capitalized on the moment and was able to finish his hearing test (which required him to be sleeping)...he passed with flying colors, but they will continue to monitor him because hearing loss is common with CDH babies.  Once he woke up from his sedation, he tried so hard to be his active, curious self again; however, he seemed a bit groggy- like he had one too many stiff drinks.

Reid pre-MRI in his cap getting him nice and toasty

Reid post-MRI coming out of his sedation

In the area of feeding, Reid continues to gain well...he is definitely filling out and finally starting to show some baby fat (it only took 6 months)!  They successfully switched him from fortified donor breast milk to fortified Gerber Good Start for the transition home.  He seems to be tolerating the formula in his stomach, but he has yet to take it in a bottle...I'm assuming that his sticking his tongue out and yelling at the bottle means he doesn't like the taste!  Unfortunately, I think eating is always going to be a battle....hopefully, it will get easier when we can transition to baby food. They have been able to condense his feeds during the day to over an hour with a two hour break in between.  At night, he receives continuous feeds to try and help beef him up and make up for some of the calories that he burns off during the day.

I'd rather eat my toy than your stupid bottle, Mom!

In preparation for Reid's homecoming, the team made an exception to the stroller policy to allow Reid daily walks  in the stroller around the NICU.  Reid's world is ever-expanding, and he remained a serious baby throughout his first stroller ride, taking in all of the new sights, sounds, and smells.  Although I must say, the walk was more like a stroll- I think we stopped about every 5 feet to greet a nurse, nurse practitioner, or neonatologist that has worked with Reid at one point or another.  If all goes well, we should be able to take Reid to CHOP's atrium by the end of the week...not sure what he's going to think of the windows, music, and larger than life mobile hanging from the atrium ceiling.  Unfortunately, nothing can prepare him for the playful, lick-happy dog waiting for him at home:)

Getting used to it:)

First stroller ride...serious baby!

  











Barring any complications, I'm hoping that the next update title is "Home Sweet Home!"

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