Happy Birthday, Ryan!!!!

I can't believe my little man is THREE today.  The last three years with him have been absolutely amazing.  He is so smart and inquisitive and witty.... God, does the boy have some wit!

Reagan is all dressed up for her brother's party:

Time to rock n' roll and set everything up!

We Interrupt our Regularly Scheduled Programming...

...for some ridiculously cute pictures.

GI & Early Birthday Fun

The GI appointment was even more frustrating than the swallow appointment in terms of waiting.  Our appointment was at 1:45 and the doctor didn't come in until 3:15.  Once again, I had a very upset and famished baby on my hands.  We first met with Dr. Thomas, who obtained a full background and history as to everything that has happened until now.  This blog serves much of the same purpose-- to remind me what has worked and what hasn't.  The GI doc looks like Tony Soprano and is very, very nice.  Even though Reagan had started out on Zantac, I didn't think it was doing enough so her pediatrician switched her to Prevacid.  However, Dr. Cuffari seems to think that the dosage she was on was more for an adult, and that she needed it twice per day instead of just once because infants' bodies absorb medicine at a much quicker rate than adult bodies.  He called it an "optimized dosage."  He also placed her on Erythromycin, which as you may know, is typically prescribed as an antibiotic, which it is, first and foremost.  However, one of the off label usages for Erythro is as a pro-motility agent to assist the food in moving more quickly through the stomach.  This is to be given to Reagan 15-30 minutes prior to eating and will hopefully reduce the amount of reflux, vomiting, and gas she experiences.  Dr. C said something that really stuck with me.  He said, "I don't care a bit about baby spit up.  All babies spit up.  She could spit up every feeding if she really wanted to.  What really bothers me is that she's vomiting due to the fact that her stomach isn't emptying the way it should after a feeding."  Reagan does spit up a lot, so that made me feel a little better.

She was all dressed up for her appointment....

Her colic is still in full swing.

At her last weight check, the pediatrician informed me that this would probably end around four months.  However, I have heard of some babies exhibiting symptoms of colic until six months or so.  The formula she is on is supposed to help with that, though... Enfamil Gentlease.  Ryan was on the same thing for his own stridor and reflux, and it worked like a charm for him.  It doesn't seem to be enough, though.  The pediatrician thought it was a milk sensitivity, although the GI doc doesn't think that's the case.  Still, I keep thinking about this other formula, Neocate.  It's supposed to be the best of the best, especially for babies with reflux... however, it's super expensive and not covered by insurance.  The pediatrician gave us some Alimentum to try.  I'll do that for her next feeding.

In other news, Ryan's third birthday is Saturday, so we had a little early birthday celebration with his best friend and her brother.  We took them to the Annapolis mall bounce area and Mike's mom brought cupcakes for them to eat.  We also had lunch at Noodles & Company.  I think he had a blast!  Her brother is 5 months old and the size difference between he and Reagan is massive!  Ryan's real party is on Saturday, but it's just for family because Reagan is too small to be around a lot of kids right now.

All of the kids together

Ryan and Violet, BFFs forever!

Dancing and hugging...

Ryan got monster tattoos!

Reagan and Mike's Mom (G-ma)

Wait, Wait, and Wait Some More...

That's pretty much what it felt like at Hopkins for Reagan's appointment with the swallow team.  We met with a speech pathologist there who specializes in infant feeding issues.  Our appointment time was 11:30 and we were supposed to not feed Reagan for about three hours prior.  One thing I did not know about doctor appointments at Hopkins is that you wait.  FOREVER.  And Ever.  So therefore, we were still waiting around 12:30 and Reagan was absolutely starving.  I went ahead and started feeding her anyway.  The specialist finally came in and did get to hear her eat a little bit.  She was SO hungry.  I felt horrible as she was looking at me, crying, wondering why the hell her mommy wasn't feeding her.  I still can't get over how much trust I see in her eyes, and I will do whatever I can to protect her.

Nothing really came of the appointment, except now we meet with the GI team on the 26th at 1:45.  I'm not supposed to feed her before that, either.  Reagan also has a weight check later this week to ensure that she is gaining weight despite the eating issues and frequent spit up and occasional but steady vomiting.

I have a feeling we're going to be running to doctors for awhile.......

RK's first trip to PA

When Mike and I got to the ped pulm appointment, we were a little confused because Reagan doesn't have major breathing problems anymore... and we didn't think she was aspirating formula when she ate.  We know she has a low resting heart rate, but while she was in the NICU they did an EEG and an EKG and determined that her heart is functioning beautifully.  The doctor is great, though, and he listened to her eat and did determine that there is no formula aspiration.  Therefore, nothing is getting into her lungs while she eats, which could build up over time and cause pneumonia.  However, he set us up with an appointment with the Johns Hopkins swallowing team, who are supposedly pretty amazing.  They are also very hard to be seen by on a timely basis, but I guess since he made the call, we got pretty lucky since we see them tomorrow!!

This weekend was Reagan's "Pennsylvania Debut"!  She finally had a chance to meet her Aunt Faithy, Uncle Rich, and Aunt Tara.  We also had Reagan's 40 day blessing in church.  She looked so beautiful!!  Reagan is also a huge fan of her Wubbanub.  These things are the greatest invention ever... it makes holding on to the paci just a little bit easier!!  They're also easier to find around the house than the small pacis, too.

Before church snuggles

RK + Wubby 4 Ever!

Here are some pictures from the 40 day blessing:

Reagan, her Godmother Lois, and I.  Lois' husband Mark is in the background (in green)

My beautiful angel all dressed up!

Anxiously awaiting more news tomorrow..........

The First Four Weeks

Things were going along pretty status quo for us.  When Reagan was two weeks old, we took her to Ryan's ENT who performed his preauricular cyst surgery on May 28.  He scoped Reagan and verified what I was already thinking-- that she has laryngomalacia.  Her pediatrician determined that her stridor was "moderate to severe," but the ENT classified it more solidly moderate and said that he has heard worse.  Eventually, she will most likely grow out of it although in extreme cases it can take up to 15 months.  Laryngomalacia basically means that she has a floppy airway.  The flap that directs air and food to the appropriate channels (esophagus vs. windpipe) is a bit loose.  Therefore, when she eats there is often a squeaking or honking sound (think geese) and sometimes it causes her to cough and choke on her formula.

Here we were in the waiting room.  Reagan absolutely LOVES her Mei Tai.  I'm so thankful that I took the time to head up to Soft & Cozy Baby in Baltimore to try on all those carriers.... and the $36 parking ticket that I got afterward was worth it :)  Plus, it lets me do more with Ryan, who is really struggling with what I call "RK Envy."  He wants to be a little baby again, too.  He's regressed almost completely with potty training and is back in diapers full time.  I'm doing my best to be very, very patient with him but it's so hard when you have a really needy baby!  He was in camp every day for two weeks per month this summer, and that really helped.  He starts school after Labor Day... Tuesdays and Thursdays from 8:30-3:30.  I think he's really going to love that.

Anyway, the laryngo isn't supposed to cause vomiting but for some reason, Reagan really started vomiting a ton the other night.  She threw up all night long, and eventually it was to the point where she was throwing up more than she had taken in... way more.

We placed a call to the pediatrician around 5 AM and she told us that we should take RK to the ER.  I went with her while Mike stayed home to take Ryan to camp.  Later, Mike brought me food from Panera, which was awesome because I was STARVING!  They gave RK lots of fluids and then did an Upper GI fluoroscopy, which determined that she has very severe reflux.

It was amazing to watch the food settle in her stomach but then to see all of this other formula that was just waving back and forth up and down her esophagus, and wasn't even reaching the stomach.  MASSIVE reflux!!  Luckily, they did an ultrasound which determined that she does not have pyloric stenosis, which would have been a much more serious condition.  They didn't keep us and released us around 3 PM, nine hours after we had gotten there.

At one point, Reagan could only sleep comfortably in her car seat while she received the fluids... she looks so dry here!  

The one thing this ER visit did is that it set into motion lots further testing.  Reagan has an appointment with the pediatric pulmonary specialist on 8/16.  I'm really looking forward to meeting him and seeing where we need to go from there.