First day back to work for Mommy

Today is my first day back to work full-time.  I feel lucky to have had more time with my daughter, although I wish she didn't have to go through so much during the first few months of her life.

This morning, Evie woke up before Daddy and was smiling at me in her pack and play.  That is the best time of the morning for me, when Evie opens her eyes and sees me and gives me a huge sleepy smile.  And then she started grunting.  And pooping.  That's when I woke up Erick.  :)  

Turns out she pooped so much, she soaked through her Zipadee Zip and her sheets, and then he changed her, and then she pooped again, and Grandma had to change her.  Yay for Team Moy! And yay that Mommy didn't have to change this one!

This morning started off with a meeting, and they greeted me with a big potted sunflower to welcome me back.  That was so sweet!

While I eat lunch, I have been reflecting on why I haven't been crying or feeling overwhelmed.  I think it's because I a) had a lot of practice leaving her with other people in the hospital, b) had practice leaving her for the day to attend a Continuing Ed Course, and c) I left her with Grandma and not a stranger.  I am thankful for how God has taken care of us so well in these last 8 months, and surrounded us with people who care for us.  The texts, Facebook comments, and voicemails today have all meant so much to me.  I feel so supported and not at all overwhelmed!  (Although ask me again on Wednesday, after I start seeing patients and teaching interns full-speed!)

If you're the praying type, we could use prayer for Evie that she would drink from the bottle for Grandma. Evie has decided that she will only drink from the bottle from Mommy, and that's not going to work. Thankful for the G-tube today!

The feeding adventures of Evie

Last week, we had 2 big appointments that had to do with Evie's feeding. One was with the feeding specialist for the first time since she was 2 1/2 months old. (So much has changed since then!) The other was with the Enteral Tube GI and Nutrition Clinics.  Evie now weighs 16 lbs! We have worked hard for those thunder thighs!

Our feeding goals for Evie include:
1) Drink more from her bottle so we don't need the G-tube
2) Eat more solids
3) Don't choke while drinking thinner liquids (i.e. we are still thickening what she drinks)

When you go to the feeding team appointment, you're supposed to bring your child hungry.  Evie didn't seem to mind that she hadn't eaten in four hours. Those are not my genes!  She also decided to show the feeding specialist that she was not interested in her bottle. A head turn into my armpit was her message to us!  Perhaps because 4 people were watching her while she ate. I wouldn't like eating either with 4 people watching me intently.

Then we put her into a chair to eat some solids.  Evie then decided to cooperate. She ate her sweet potatoes and happily closed her lips around the spoon. This sounds basic, but it is quite a victory. Kids with low muscle tone can have more trouble coordinating closing their lips around the spoon, bringing the food back into their mouths, and swallowing. Evie said, Sweet potato? No problem!  (But she hates green beans!)

One of my biggest questions was whether we could transition her to another way of drinking because she just isn't great at the bottle. 

The speech language pathologist (SLP) reached into her magic cabinet and pulled out 2 options. 

The first one was a sippy cup called the Tilty Cup, which she said is out of production.  I thought the SLP was going to tell me how awesome it was and then I couldn't have one. The reason it is awesome is because it is like a sippy cup with a hard spout, but it has a slanted inside so that the baby doesn't need to tilt her head back to drink. This is important for Evie, who hyperextends her neck when she is tired.  Evie thought it was really fun to bite the spout, and maybe sipped from the cup once.  Lucky for us, we get to try at home, because our SLP gave us one!  However, if you are sad, I am happy to say that they are not out of production.  Evenflo decided to start making Tilty Cups. They are available on Amazon.

With this Tilty cup, Evie did just ok. The milk came out too fast from the holes and mostly ended up on her bib.

Then Evie's shining moment came with the straw cup.  It's a Rubbermaid flip top straw container that you can squeeze to make the liquid go up into the straw. The squeezing is key, so Evie learns that there is liquid in the straw. Evie actually sucked from the straw the first time she was presented with it.  The SLP mixed in sweet potato puree with the formula until the formula was thickened. Evie sucked from the straw one more time and then decided she was done with this, but we were encouraged.  I was really amazed that she knew what to do.

My gut was that Evie just isn't great at the bottle and will do better with a different kind of cup drinking, and we just have to figure out what it is. It might be the straw cup! She still needs thickened liquids for now, mostly to slow down the rate of the liquid flowing towards her, but we are making progress! 

As a side note: Many kids develop an oral aversion with their feeding issues.  Some of them have NG tubes, which are feeding tubes through their nostrils, and some are not allowed to drink by mouth due to severe aspiration.  We are immensely thankful that Evie doesn't have an oral aversion. Some of it may be due to her daddy's love for clean teeth, and how he brushed her "teeth" with her banana toothbrush from very early on.  She loves having her mouth brushed with this banana toothbrush and water.  I highly recommend it!

I have great hopes for Evie and the straw drinking.  Then we can do less and less with the bottle, which is my arch nemesis.  Evie, keep eating and drinking!  It is up to you to keep practicing and get off this g-tube! Love, Mommy. 

Have G-tube, will travel

Not sure if there is a book called Traveling With A Baby For Dummies, but I felt like I needed it. As someone who is a planner, I of course had to research how to take a baby with a G-tube and multiple medications on the plane to Vegas.

The best summaries of what to bring were on the Feeding Tube Association's site, and on the blog Feeding Raya.

The logistics of how to get Evie through the TSA process and how to feed her on the plane, in a hotel, and in a hot environment were not situations in which I wanted to "wing it."   Here goes.

All our medications were put in a small cooler the size of a thick phone book.
The ice packs were frozen solid, because I had read that if your ice packs are slightly liquified in any way, the TSA will confiscate them.  Sure enough, I heard TSA agents both times mumble "frozen" to themselves as they confirmed that the ice packs were nice and frozen.

Printed this card: TSA Card

This card alerted the agents in the line that we needed more screening than the average person. On the way back, an agent saw Evie in her stroller and asked if we had formula.  I said yes, and we got to go through the quicker line. Yay!

One of us carried Evie through the security gate, and we were through.  When I called the TSA's special needs hotline,  I was told to get to the airport at least 2 hours before the flight.  In hindsight, I wish we had gotten there 2.5 hours before, because it seemed a little tight for us to get food for the plane and feel situated. But hey, we made it, and that's what counts.

This was our first time being eligible for pre-boarding!  We were allowed on our Jetblue flight after the Mosaic and Even More Space customers.  Once we got on the jetway, our handy Gate Check bag came into play.  Evie was in her carrier and her snap and go, and we threw the whole thing (without Evie) into the big red bag.  It had a pink Gate Check tag from the check-in agent, and into the plane we went.

My awesome friend GY told me to bring a Boppy on the plane and that I would not regret it. The thought of lugging around a big Boppy made me hesitate, so I decided to look up a travel boppy. Lo and behold, the Boppy people knew my need.  This was the best thing ever on a 5 1/2 hour flight with a 16-lb little girl on our laps.

This travel boppy folds up into a cute purse-like thing and is very light.

Evie needed a couple bottles and g-tube during the flight.  Erick put 2 ready-made Dr. Brown bottles in the cooler, and I had packed 2 canisters of 2 teaspoons of oatmeal each to thicken her formula.

I knew I hoarded those Medela pumping canisters from the NICU for a good reason!! They are perfect for pre-measured amounts of baby oatmeal!

G-tubing wasn't much different on a plane vs anywhere else in public...we used our trusty Pepe backpack and had her g tube extension tube primed and ready to go. I felt a little self-conscious about the loud beeps that the pump made, but no one even looked over at us. They were too busy making googly eyes at Evie.

Of course we brought a trusty ZipadeeZip for napping! I wish I had had my own ZipadeeZip for a snuggly nap! 

I like Amazon a little too much. I was looking for something online, and Amazon suggested a travel bottle cleaner and drying rack. I thought this was a great recommendation. Then it suggested baby dish soap. This made sense to me, since we don't use regular dish soap for evie's bottles.

I had the satisfaction of whipping out the soap and the bottle cleaner/drying rack when Erick realized we didn't have dish soap in our hotel kitchenette. All my shopping skills had paid off!!

One of the possible issues with living in a hotel was that we weren't sure we could get a freezer for our multiple ice packs. So instead of making the bottles for the day ahead of time, Erick measured out just the formula powder for each bottle (we brought a whole formula can), and we just added bottled water to the required amount when she needed to have a bottle. No warmer needed!  Thankfully we were upgraded to a suite with a full fridge and freezer, but we still didn't need anything to spoil in the heat. 

Another possible dilemma was how to hang the g-tube pump at night during Evie's continuous feed.  Usually we have the IV pole next to her Pack and Play. Before we left on our trip, I grabbed an over the door hook from the closet door and threw it in the suitcase. Best decision ever (besides the travel boppy). We hung the hook on the side of the pack and play and hung Pepe the backpack on the hook. It worked beautifully.

Re-enactment of Pepe on the over the door hook on the pack and play

One of my fears was that something would happen to her g-tube button whe we were out of town.  To prepare for this, I got a g-tube organizer off of Etsy, and put together an emergency kit. This kit had a spare Mini One g-tube button in the EyeMed metal case, extra extension tubes, tubie covers, an extra AMT clamp so we wouldn't feed the hotel bed, and various necessities like saline, cotton-tipped applicators, gauze, syringes, and Grip-Lok anchors.

It's really a glorified travel organizer, but it was worth having everything together. I have more emergency supplies in Pepe the backpack. Speaking of Pepe, it's time to retire Pepe I and hire Pepe II.  Pepe I started flaking from frequent use.  Pepe II has an extra pocket and seems stronger. Thank you for your service, Pepe I! 

I highly recommend Feedie Friends on Etsy.  She adapts the kid backpacks for G-tubes so well.

Evie living it up and G-tubing on the bed in the hotel

Vegas in August is so hot. We avoided being outside as much as we could.  We also avoided the smoky casinos.  The bright sun was a concern, so I got a sun shade for Evie's infant carrier.  It's like a little cabana for your stroller.  It gave me peace of mind about the strong sun shining on her on the unforgiving Vegas sidewalks.
The caption is right--this keeps out strangers as well.
Total side note: When we were eating breakfast at McDonald's, Elvis walked in to use the restrooms. That totally made me giggle.

We G-tubed at the wedding, and Evie danced with her mommy and daddy. 
And that's a wrap!  Evie was an excellent traveler for the most part, and her parents are grateful!  It was a big production to get out there, but worth it to see our friends get married. 

Evie's first trip, and the winner of the Peekaboo cards giveaway!

This past weekend, Evie took her first plane ride and her first vacation!  Our friends Jerry and Rebecca were getting married in Vegas. 

I was nervous about her first flight, and spent a few days just making sure we had everything we needed. Just packing for a baby is hard enough.  Make that an aspirating baby on a g-tube who is starting solids, and it gets even more interesting.  But I am thankful that it's not an aspirating baby on a g-tube on oxygen!!

Evie snoozed before take-off!
We made it to the airport just in time to get through security, grab something for dinner for the trip, and pre-board.   Evie got her first pair of airplane wings, but was too sleepy to enjoy them.  Evie became known as "the good baby" on the plane, because there was another baby who was screaming the whole flight.  Poor baby and her poor mommy.  

One fear was that Evie had not pooped in 2 days, and she usually poops at least once a day. This was a scary thought, since last time she didn't poop for 2 days, there was a huge blowout and poop got all over our new babysitter.  Evie decided to be nice and did not poop on the plane. I had 5 outfits, many diapers, poop disposal bags, and lots of wipes ready to go.

 We checked in at the Vdara Hotel. For people with kids, this place is great, because there is no casino (but is next to the Aria and the Bellagio) and has a kitchenette in each room.  We were lucky enough to arrive late at night when they had no choice but to upgrade us to a larger room.  Imagine this mommy's joy when we saw a full kitchen and a washer/dryer, as well as 2 bathrooms and a jacuzzi! (I wish I had had time to enjoy the jacuzzi!)

City Corner Suite

Picture taken of Evie after she did a big poop explosion in her Zipadee Zip (which contained everything!) and got a bath in the sink. Thank God for the washer/dryer in our suite!

There were so many new things to see. Evie loved looking out the big window out on the Strip.  However, there were times when she was just over-stimulated.  Too many lights and too noisy.  She definitely preferred the quiet time in the hotel room. 

Family picture on the tram
We ate at the Aria buffet for brunch and the Bacchanal buffet at Caesar's palace for dinner!  I do NOT recommend eating 2 buffets in 1 day...well, maybe I do. It was a good food day.

While Daddy was being a groomsman, Mommy and Evie went for a walk in the Bellagio to see the Conservatory and get a crepe for Mommy. 

 Then it was time to take a shuttle to Uncle Jerry's wedding!  It was 30 minutes outside of Vegas. Evie was once again a good little traveler and we got there without a hitch.
 Evie was pretty good during the wedding, although it was something like 104 degrees outside in August. The wedding guests sitting next to us were nice enough to insist on fanning her. 

Uncle Jerry and Aunt Rebecca got married!

What are you doing, Mommy?

Evie decided it was time to go home and screamed during Daddy's toast to the bride and groom. She was lucky she was so cute! 

All too soon, it was time to go home to Boston!  Evie again was complimented on what a nice baby she was on the plane.  Good job, Evie!
What can I say?  I'm an awesome baby!

 And the winner of the Peekaboo cards giveaway is...Sarah B!  Congrats, Sarah! Hope your friend enjoys them!

Pop-Up Zoos, High Contrast, and A Giveaway!

Evie hates tummy time. Her low muscle tone that comes with Down Syndrome makes it a little harder for her to coordinate pushing herself up. She's getting better at it by the day, but it's still not her favorite to be on her tummy.  She yells at the rug until I pick her up. She also does not like to sit still anymore. This can be a problem when she is getting her food through g-tube, and needs to sit for a little more than an hour.

Enter my friend Paul Lee's awesome designer baby products, under the brand name Giantsuper. I'm not just telling you about these because he's a friend from way back when, but because Evie actually really likes them. 

The first product we bought was the Peekaboo Pop-up Zoo. These beautifully designed cards have animals on the front and thoughtful questions to talk about with your child on the back. The best part is that you use your finger to pop up the animal, and then you get to see your baby's face light up.

Enjoying peekaboo

I told Paul that I loved the pop-up zoo, and he sent me another product for Evie, called Tummy Time Playboard.

This Playboard unfolds and sits up on its own, with a mirror one one side and a stand for the beautifully-illustrated cards on the other.  The cards are 2-sided, with high-contrast animals on one side, and high-contrast designs on the other side. 

As you can see in the picture, Evie is smiling during tummy time, which is saying quite a lot about this product.

Cool animal pictures
The high-contrast artwork is great for visual development, and holds Evie's attention quite well, unless I am taking her picture, and then she wants to look at my phone.

There are also Alphabet Cards, but Evie will have to grow into those!

Paul was nice enough to send me an extra Peekaboo Pop-Up Zoo, so I get to do a giveaway! All you have to do is comment below about your favorite animal and why you would like to try a pop-up zoo.  Then enter the rafflecopter giveaway below.  The giveaway will close on Monday, August 10 at 12 am.

a Rafflecopter giveaway

Evie says you'll like these!  Use the code "peekaboo" for a 40% discount on the Peek-A-Boo Pop-Up Zoo.

If you're in the market for high-contrast visuals for your baby, I also like "Hello, Animals!"  I bought it for Evie before she was born, and we read it to her in the NICU.

This post was brought to you by Evie and her mommy, who shops on Amazon a little too much. A big thank you to Giantsuper for giving me a reason to post!

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