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.