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:)