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

Joy to the World...

Here is a list of some of the small things that have brought us joy over the past 20 weeks:

• Being able to change our first diaper- we quickly became skilled at maneuvering our arms through the side portholes of Reid’s isolette, and he became quite skilled at peeing out those same holes and soaking his nurses and parents.
• The first time Reid sucked on a pacifier…who knew they made preemie pacis? I have no idea how he fit the pacifier in his mouth with the ventilator tube! Kids on the vent for prolonged periods of time tend to have oral aversions, so we were so happy when he showed an interest. However, now I think we may have created a monster….he hasn't quite mastered keeping it in by himself, and when it pops out, he vigorously searches for it and lets out a wail when he can’t locate it.
• The first time we were able to hold our baby boy…it only took 57 and 59 days, respectively! Once we got him into our arms, we wouldn't move an inch in fear that we would jostle his breathing tube or tangle his IV tubing.
• Moving from his isolette to a warmer bed and then to a big boy crib! Looking forward to the day when we are able to transition Reid to his crib at home.
• The day that he no longer received his nutrition intravenously and started “eating” breast milk (through his ND tube).
• Being able to dress Reid in baby clothes for the first time- although we had to leave one arm and one leg out because of his numerous IV’s. So technically, I guess he was only half-dressed.
• Reid’s first trip out of the unit...although the reason wasn't the best (cardiac catherization). He was pushed through the hallways in his crib and was able to ride the elevator…his view of the world was no longer confined to his small NICU pod.
• The day Reid was extubated and we no longer had to worry about him self-extubating…on several occasions, I caught him gripping the ventilator tube with both hands. Thankfully, he left it up to the professionals to remove the tube.
• Hearing his first sneeze…it’s a powerful one, and I think he surprised himself with his voice.
• The first time we were able to pick Reid up from his crib without assistance and hold him against our chest…nothing like feeling your baby’s heart beating next to yours and kissing the top of his head.
• Reid’s first tummy time experience. He enjoyed the different position and just as Bryan put his nose near Reid’s bottom to see if he needed a diaper change, Reid released some major gas. Bryan gagged, and I had to change the diaper- what’s new?!
• The first time we were able to give Reid a bottle…although, we had to keep it a secret. He showed us that he definitely does NOT have an oral aversion!
• Giving Reid his first real bath, rather than a sponge bath. Our nurse found a basin large enough, and he loved being submerged in the warm, soapy water. Next up, the swimming pool this summer:)
• The CD player that one of his nurses attached to his crib- Reid has listened to so much music, we’ve had to change the batteries 5 or 6 times! His music preferences range from nursery rhymes to Frank Sinatra to Metallica. He has a very eclectic taste in music:)
• The hardworking, dedicated nurses showing their love for their “boyfriend," Reid. Their daily check-ins; encouraging me and Bryan to become involved in Reid’s care as much as we could from the beginning; making his name sign; organizing his bedside (for his neurotic mother); coordinating his crib sheets, blankets, and outfits; not taking a lunch when his condition was so critical; playing music; holding him when we weren't there; decorating his goggles when he was so sensitive to stimulation; leaving personalized messages on his whiteboard; exposing him to different languages (one Nurse Practitioner loves to speak Spanish to the little guy), listening to Bryan and me vent about our frustrations; giving us tissues and privacy when the emotions got the best of us; and most of all, being our family for the last 4 ½ months.

Through all of this, we have learned that sometimes you have to experience the depths of sadness and pain to appreciate the simple joys of life. Thank you, Reid, for teaching us this valuable lesson.

This Week in Reid Review 12/11-12/17

An exciting weekend of lots of new visitors was topped off when Reid was held by his Poppy (my Dad).  After Poppy entertained Reid by making silly sounds and faces, he handed him off to me to transfer the little guy back to his crib.  As my Dad stood up, he held the boppy in the air and pointed to the brown spot that looked strangely like bird-poop.  Immediately, I knew that Reid had taken down another visitor - first he peed on his great-aunt and now he pooped all over his Poppy's freshly ironed khakis.  I guess you could say Poppy was poopy.  I'm sure there's lots more where that came from....wonder who the next lucky victim will be.

Most likely leaving his mark on Poppy

Reid has finally reached full feeds of fortified breast milk through a nasoduodenal (ND) tube.  The yellow tube enters through his tiny left nostril and empties into his duodenum which is the first part of the intestine.  The feeds bypass his stomach in the  hope that he will not aspirate or experience reflux, which is a common issue for CDH babies.  So far, so good...Bryan likes to remind me that if Reid is a "Unangst," feeding will not be a difficult task for him... and judging by the amount of food consumed by Poppy, Uncle Josh, and Great-Grandpop Miller- this kid's got eating in his genes:)  I like to think that one of the CDH-related issues HAS to be easy for him, and I hope that it's feeding.  Our little peanut reached the 8 lb. mark this week and Bryan and I rejoiced....it's the small things, right?!

Close up of the ND tube and a little smile in his sleep:)

On Wednesday morning, Bryan and I came into CHOP earlier than usual because we had signed Reid up to be visited by the NICU Santa.  We weren't quite sure what the Santa visit would entail, and I think we were more disappointed than Reid; he completely slept through his first encounter with the jolly old guy.  Santa's visit consisted of a thirty second whisk through Reid's room- just enough time for Santa to creepily stand next to Bryan, me, and Reid and have a picture snapped (Bryan and I joked that the picture looks like Santa's head is floating next to us).

Family pic with a floating Santa head

Thursday was quite an exciting day...although, we aren't supposed to announce what happened.  Two of the awesome nurse practitioners came to visit Reid late in the day.  After doing their normal assessment of listening to his breathing, asking us if we had any concerns, and admiring Reid's businesslike attire for the day, they started cracking jokes about giving Reid a bottle (which is something that we've been told won't happen for awhile).  As Bryan and I were joking along with them, we heard one mutter to the other, "Let's try it and see how he does."  Bryan and I laughed in disbelief until we watched our nurse heat up 3 mL of breast milk (to give you a reference, a 20 oz. bottle of soda is 591 mL- so we're not talking much here), which barely filled the bottom of a large Dr. Brown's bottle.  After word spread (and it does fast), a group of NICU nurses congregated around our bedside as I awkwardly gave Reid his first bottle.  We were warned that he might initially start to choke because he has never had to coordinate the skills of sucking and swallowing.  I think all of our efforts in pushing the pacifier from the beginning (something I thought I would never encourage) paid off.  His father was right; he ate like a champ and then fell into a deep milk coma.

Milk coma

Last, but not least, they finally started weaning the Remodulin (one of the pulmonary hypertension medications) and if all goes well, Reid should be completely weaned by the beginning of this week.  This may not seem like a huge deal to others, but to us, it means that they will remove his PICC line (peripherally inserted central catheter), which he has had since day one.  Essentially, this means his medicine pumps will be eliminated and he will just have the nasal cannulas and a feeding tube- in my mind this means less clutter by his bedside, which I like:)
 

This Week In Reid Review 12/3 - 12/10

At the beginning of the week, they started Reid on Sildenafil (Viagra) and have been steadily increasing his dose until he reached the maximum on Friday evening. He is now on two vasodilators (Remodulin and Sildenafil) and the plan is to start weaning him from the Remodulin next week. In researching Viagra and watching Reid, it appears that he has been feeling the side effects- diarrhea and raging headaches. Poor little guy can't tell us that he is experiencing discomfort, but his fussiness is definitely an indicator. They finally started giving him Tylenol after his daily dose of the Sildenafil and that seems to be reducing the headaches. Unfortunately, he has developed a pretty severe diaper rash. We have tried every concoction of powder, Vaseline, triple paste, and Aquaphor to no avail. On Friday night, the nurse (who made us promise not to leak her strategy) rigged a contraption to help aid his sore bum. Bryan and I returned from dinner, and she warned us that she was trying something unconventional. When we peered over the side of Reid's crib, we were greeted by our little guy's diaperless bottom sticking straight up in the air. His leg with his IV was wrapped in what looked like cling wrap and an air mask was strapped to his tiny heiny to give him some relief. It was quite a sight, but he seemed completely content....we didn't take any pictures for fear we would wake him up:)

First time in a swing

He loves his boppy

Not only did Reid's butt have a workout this week, but an Occupational Therapist (OT) started working with him on a regular basis. Because he was a preemie and endured so much stress during the first few months of life, his muscles are tighter than a normal baby and he has a tendency to clench his fists. In an effort to relax his hands, the OT first attempted to make hand splints out of a play-doh-like material that proved to be no match for Reid's strength...he busted through it in a matter of seconds. She then resorted to hand-sewing a customized splint with a suture needle (she's quite resourceful), which was much more successful. We are trying to be diligent about having him wear his splints throughout the day, and it seems to be working....he's already opening his hands much more and I'm no longer finding lint accumulated between his fingers.

Now that Reid is more mobile, it's easier for other people to hold him. After the grandparents had their opportunity, Reid's great-aunts were on the top of the list to get him into their arms. They have been such loyal visitors since the beginning and have witnessed first hand the good and the bad, so I was very excited for them to get their chance. They loved every second of holding the little guy, despite Reid peeing all over one of the Aunts. He must have been super comfortable because he christened the entire front of her shirt:) She was such a trooper and said that it was all worth it.

What a proud Great Aunt!!

Most likely peeing as this is being taken!

Well, four months have come and gone...

and people were right when they said that the NICU experience is like riding a roller coaster; although, I think roller coasters are much more fun. I can't even begin to imagine blogging about the minute details of the first two months. Things changed so quickly and just when we felt that Reid was making progress, the doctors would tell us that they had exhausted their options and that he might not make it through the night. We literally lived minute to minute...it's easiest to keep those days locked away and not relive the ups and downs. So, here's a brief synopsis of Reid's first four months:

8.2.11: Reid made his grand debut. He was stabilized and transported from HUP to CHOP via the secret underground passageway. He was transferred to an isolette, which would become his "home" for the next two months. Every little sound or touch could send Reid over the edge, so the nurses often covered his isolette with a blanket, covered his eyes with goggles, and changed his diapers as quickly as possible.

Reid at 4 days old

Reid's isolette

9.1.11: After one long month of being ventilated on the oscillator, Reid was switched to the conventional ventilator. The conventional vent was much quieter; Bryan and I felt progress was being made.

9.11.11: Today was the Eagles' first game of the season, and the weekly tradition of covering Reid's isolette with Bryan's Eagles jersey began (although, it doesn't seem to have brought the birds much luck)!

9.28.11: After 57 days, I was finally able to hold my baby boy. It was truly a special day, and I don't think there was a dry eye in the room, nurses included! The nurses found Reid an oversized hat and draped Bryan's Eagles jersey over him to keep him toasty:)

9.30.11: Bryan had his chance to get Reid in his arms. Of course, he made sure that Reid had his Eagles hat on.

10.5.11: The surgeon finally felt that Reid was stable enough to perform the necessary surgery to repair his hernia. We were warned that things would get worse before they got better and boy, were they right about that! Surgery itself went smoothly; however, recovery was quite rocky.

Mom containing Reid pre-surgery

Post-surgery...notice the personalized

Eagles gauze dressing

10.31.11: Reid celebrated his first Halloween, which I think was more fun for me, Bryan and the nurses than it was for Reid. We dressed him up like Mickey Mouse and our best friend's baby was Minnie. The babies haven't met each other yet, but because of great programs like photoshop, they were able to sit side-by-side in their cute costumes:)

11.21.11: Reid had a cardiac catheterization performed to look at the pressures in his heart and the amount and efficacy of his blood vessels. The results of this procedure were used to tweak the treatment he is receiving for pulmonary hypertension and make a future plan. The cardiologist's goal is to wean him off of the vasodilator that he is currently on and switch him to a vasodilator that he can take orally. We later found out that he would be switched to Sildenafil, which is another brand name for "Viagra." Apparently, Viagra increases blood flow to two body parts- the lungs and well, you know the other one.

Reid's first trip out of his room- very exciting!

11.24.11: We spent our first Thanksgiving as a little family. Holidays are definitely different this year, but the NICU was very calm and peaceful. We are truly thankful for so much this year- what an inspiration this little guy has been already!

11.28.11: Extubation Day! Reid was extubated at 11 A.M. and let out his first raspy cry shortly after. His first sneeze brought tears to my eyes- it was so great to hear his voice for the first time. Bryan and I are now able to pick him up without a team of nurses and respiratory therapists. He is much more mobile and accessible- he loves the freedom and so do Bryan and I.