Little baby X-Rays and Evie's Eating

Last time we did a swallow study, Evie was about 4 weeks old. She had to fast for 3 hours and she let us know she was not ok with that. She screamed all the way to the ambulance and to Childrens Hospital (even though it was across the street, we still had to take an ambulance!).  We held her hand and her pacifier through portholes in the side of the plastic isolette.

By the time we got to the fluoroscopy lab, she was a piece of work--flailing around and screaming her head off.  At that visit, they put her behind an x-ray machine and we could see her little baby skeleton. When she finally got her milk that had barium in it, we could that sometimes she allowed milk down her airway.

And so began the thickening of her milk to "nectar thick." This just means adding in baby rice cereal or oatmeal cereal to a thicker consistency. If she had really aspirated more, we might have had to go to the thicker "honey thick" consistency.

Fast forward 6 months later. We went back to the fluoroscopy lab, this time with our Early Intervention friends, and Evie was smiling and playing with her hands.  So happy that I did not have a screaming baby during the drive and during the testing!  I put her in the feeding seat behind the x-ray, and she thought it was fun and looked around at the 3 Speech-Language pathologists (SLP's), the Radiologist and his 2 residents, our 2 Early Intervention specialists, and Mommy, and smiled at us all.  A 9-person audience to watch Evie eat.

Feeding Evie upright in a car-seat like contraption when she is hungry and behind an x-ray screen is extremely awkward and tough.  The SLP's had a vast array of nipple sizes and and thickeners to try.  2 SLP's watched one screen, another SLP took video of the study, and the radiologist adjusted the x-ray screen and watched the test.  I guess it takes a village during swallow studies too!
"Mommy, call someone and tell them to bring me food!"
Here's how the swallow study turned out:
1. Unthickened formula in a Level 1 nipple: small sips, No aspiration
2. Level 2 Dr. Brown nipple with oatmeal: couldn't get the oatmeal out
3. Level 3 Dr. Brown nipple with oatmeal: No aspiration
4. Sweet potato a la Barium: No aspiration, and swallowed like a champ!  Thought barium tasted icky though.

So overall, yay!  No aspiration!  Now begins a gradual change in her thickened formula every 2 weeks, where we either decrease the amount of oatmeal and/or decrease the size of the nipple opening.   Hopefully she adapts well.

Evie celebrated with a big poop while we were still in the waiting room about to leave.  Mommy thanks you, Evie!

Celebrating in the cafeteria before going home
Since the swallow study, Evie's eating has been up and down.  She had a really good week and then the next week decided she only wanted 10 ml at a time.  I don't blame her, because she had to adjust to a different amount of oatmeal and a smaller nipple size.  But 10 ml at a time meant long sessions with the G-tube feeds.  Hoping for a good eating week this week!

Go Evie Go!


We won't be seeing you later, Ollie!


Today Ollie the oxygen tank moved out of our lives. He took with him Big Bertha and the tiny oxygen tanks, and the big oxygen condenser back to the medical supply company.  It feels like a momentous occasion!

Farewell, Ollie! We won't miss you!

Goodbye, Big Bertha!

Ice cream to celebrate!  Oh--sorry, Evie, you can't have any yet. Mommy and Daddy will celebrate!

Evie's first photo shoots


Evie's Photo Shoots
Many of our friends have had newborn photo shoots with their babies.  I wanted so much for Evie to have a tiny baby photo shoot as well, but she was in the NICU, and then had an oxygen tube in her nose for the first 5 months of her life.  Now she is getting bigger by the day, so I felt like we needed to get photos done!

Evie's Uncle Dave was visiting and had his fancy camera, so we had some fun with posing her.  Here is a sample of those pictures:


I like this green stuff they call grass. 

This is so fun!

Mommy! You have sweet potato on your shirt!

You're so funny, Mommy!




More photos to come from Uncle Dave!  Pay no attention to my finger at the bottom of the picture.

Our friend Alice does photography on the side, and was nice enough to spend her afternoon with us.  I love how they came out.  Here is a sample of those!  She has an awesome photography blog, if you want to check out more of her work at https://duckie1023.wordpress.com/. 

Looks contemplative...really going for sucking on Mommy's hand

She allowed me to keep the headband on her for the whole time!

My favorite.

New banner photo?

Sleeping beauty...in the middle of the photo shoot.

Making the most out of nap time

She kept her eyes closed for most of the outside shots!

What's up, guys?

Comb over. 

What's so funny?

Too many kisses, Mommy!


Thank you to my expert photographers!!  You made my wish come true!




Practicing on dolls and G-tube FAQ's

Yesterday at the hospital, I practiced changing out the g-tube on a doll who had a hole drilled into her stomach so parents like me could practice on her. 


Basically this involves deflating the balloon inside the g tube apparatus sitting inside the stomach, pulling out the whole apparatus, and quickly inserting a new g tube apparatus and inflating the balloon with a certain amount of water. Preferably when her stomach is less full so not as much of the stomach contents spill out.  This is way less scary on a doll!

Ah, the glorious life of a tube mom! I hope I don't have to change it anytime soon.  These have to be changed every 3 months or when she grows too big for her current size g tube. 

I am also well-versed now with accessories for Evie's tubie life. Who knew there was a market for G-tube accessories--belts, stickers for the food bag, g-tube doll buddies to help kids not to feel alone, bags for the ice packs, etc.  The Feeding Tube Awareness site is definitely the best place to start for a comprehensive list.  There is also a good presence of Tubie accessories on Etsy.com.

I imagine that the world of G tubes is as new to most of my readers as it was to me. Here are some FAQ's:

1. Let's start with fashion! How do you dress your child in a cute piece of clothing if she has a g-tube that needs access?

I definitely find that sleepers with the snaps are much easier for accommodating and allowing access to the g tube.  I'm sad that she hasn't been able to wear anything with zippers on the front.  Carters had snap front rompers for the summer, and I bought as many of these as I could!

For regular dresses, I anchor the g tube with a grip-lol tape on her side, and then tuck the tube through her bloomers. 

Tummy Tunnels:  these are good to put on onesies, but not sleepers. I ruined a perfectly nice sleeper because I put a tummy tunnel on it and created a hole for the g tube but then Evie just sat around with a nicely dressed hole in her clothes.

For a zippered sleeper, snip a hole on the seam in the crotch or down the leg.  I'm guessing we won't be including these in our hand me downs! We did this with our Zipadee Zips and they work great! 


2. How the heck can I go out with my baby if we need to be hooked to a G-tube every 5 hours for 90 minutes at a time?

When Evie was about 3 months old, I saw a woman in a hospital waiting room feeding her son by G-tube with a little lunch cooler next to her.  I asked her about it, and she showed me the G-tube bag nestled in the cooler with an ice pack, and another pocket with the pump sitting inside.  I was so excited to see this.  IV poles don't exactly travel well.  So I went to Target and bought my own lunch cooler. That was our first travel bag.

I also found a seller on Etsy who adapts kids' backpacks for g-tubes. I found a penguin backpack on her site and I was in love. Now Pepe the Penguin backpack goes where we go!  Pepe gets equipped with a g-tube bag full of formula, and the tubing gets threaded through to the front pocket, which hooks up to the g-tube pump that regulates how much food she gets. An ice pack keeps the formula fresh.




3.  How can I keep the G-tube from disconnecting from the extension tube?

We originally used the CORI box, which was invented here in Boston for a girl named Cori. But then the length of the catheters were changed, and now our box doesn't fit anymore. I hear that they are working on a new version.
http://www.corisafe.com/Images/Other%20Images/cs.jpg
There are also cloth versions on Etsy, but they don't do much except keep things from rubbing up and accidentally dislodging the connection. If any pulling happened, this wouldn't be very helpful.  I learned that the hard way in the car.

My latest find came out of desperation when the length of the bag catheters got longer. That's when I found the AMT clamp, which is harder to put on, but definitely more secure than the others, and allows med port access at all times.  Our medical supply company provides this for us.



4.  Can the G-tube button come out?
Yes. We were told to take her to the ER asap if this happens, because the hole can close in 2 hours.  As kids get older, it's hard to keep them from pulling on the button or tube, so we would have to purchase a protective belt if she has the g tube a bit longer. 

There are lots of cute handmade protective belts on Etsy.com if you search for G-tube belts.

5. How long will Evie need her G-tube? 

We don't really know. It's up to Evie. The hope is that now that she had had heart surgery, she will gain strength and not burn so many calories by eating, and re-learn to eat without being so tired. As she eats more and more orally, we can wean her off the g tube.  I have read about kids developing feeding and swallowing issues like oral aversions, so I am glad that Evie still likes to eat from the bottle, and we will continue to reinforce that. I've talked to several moms who've done it, and some took 2 months and some took 3-5 years.  They all said there were ups and downs, but gradually they got the hang of it. There is a feeding team at Childrens Hospital to help us, and Early Intervention as well.

That's the G-tube lesson of the day! If anyone has other questions, I'm happy to answer them!  A very good resource is a blog by a tubie mom at Feeding Raya.  She has awesome tips for troubleshooting, as well as telling about her own experience. 

Evie sounds like a Canada Goose

Happy Laryngomalacia Day! According to Facebook, it is Laryngomalacia Day, and I must spread the word.

When Evie was a little NICU baby, the nurses and doctors started mentioning something called "stridor" when talking about her breathing. I didn't really know what that meant, but I knew that her breathing was noisy and kinda sounded like that of a Canada goose.  We thought it was actually rather cute. 

Throwback to the days in the NICU

Laryngomalacia is the clinical term for a floppy voicebox.  The tissue over the top of the voicebox is floppy in children with laryngomalacia, and the folds of this tissue come together and vibrate when the baby inhales.  This makes a harsh or high-pitched sound.  It can also cause problems with eating and swallowing, as the floppy tissue can interfere with liquids going the right way.  Evie had a bronchoscope down her throat during her g-tube surgery so they could confirm that there were no other issues further down her airway.

kidshealth.org


Thankfully, kids with laryngomalacia usually grow out of this by 18 months of age.  There are those with severe laryngomalacia who need surgery and other interventions, but 99% of kids get better with time.  We often get asked if Evie ever turns blue. This can happen with kids with laryngomalacia because of the obstructed airway, and thank GOD that this has never happened to her.  There is a great site at Coping with Laryngomalacia that describes more in detail and provides great resources and support.

www.copingwithlm.org 

Evie was diagnosed with mild laryngomalacia, but still had trouble eating.  Besides the holes in her heart causing her to be extra tired when eating, she also had to cope with aspiration from the laryngomalacia, which is when liquid can go down her airway instead of her esophagus.   She would choke and sputter (and still does sometimes) when drinking her milk.  She also could not coordinate her suck and swallow very well (although she has a very strong suck).  All of this can lead to an oral aversion, so we are very careful when we feed her.  If she cries out of frustration or fear that she will choke, we stop feeding her and give her a break, and then try again when she is calm. I pray every day that she will not develop an oral aversion, because that will set us back quite a bit in weaning her off the g-tube. 

On a happy note, Evie does not sound like a Canada goose as often anymore.  And she has been eating much more by mouth in the last couple weeks.  When I say "much more," I mean that she drinks almost 2 ounces at a time by herself, which is like nothing to other babies her age, but we are very pleased with her progress.  I have heard of kids being weaned off the g-tube in 2 months and others in 3-5 years.  It's up to Evie, but I am definitely hopeful that she can be off it sooner rather than later.  

So here's to not sounding like a Canada goose anymore, and for all the formula to go down in the right direction!  Go Evie!

Postscript: Evie said goodbye to her Uncle Dave yesterday!  It was fun having him here!
 

Not cooperating during an impromptu photo shoot with Uncle Dave


 

A day in the new life of Evie

Some friends have asked what a day looks like in the life of Evie. Post-heart-surgery, she is stronger, and without Ollie the oxygen tank, we are so much freer! 

Evie starts the morning in her play gym, working on her grabbing skills.  Then we do some tummy time, which she still doesn't like so much.  Because of reflux, Evie can't always lie flat on her back, so the morning is the best time before she has a bottle.

We usually have an appointment once a week for various follow ups. Today we went to Boston Childrens for her Endocrinology follow up.  We woke up earlier than usual and headed to the hospital.  It was wonderful to have my brother along to help us.  Lifting the car seat out of the middle of an SUV is killer to my back!

Daddy usually gets all of her medications ready in the morning and gives them to her through her g-tube while she's just waking up in her bed.  Then Mommy packs up the bottle and g-tube bag inside Pepe the Penguin backpack, changes her diaper, and cleans up Evie's g-tube area.  

This time, we got to the hospital early enough for a Starbucks stop.  Of course that was apparently the best time for pooping as well, because I heard and smelled something as Evie and I waited for my brother in the waiting area.  As I lifted her up, I realized the extent of what had occurred.  An "ohhhh no, baby" escaped my lips as I felt the wetness of her back and then saw the brown stain spread up her back all the way up to her shoulder.  The people around me also saw, I'm sure.  This is the very reason why I now pack a baby towel in the stroller. I wrapped her in the towel and zipped over to the restroom in the lobby of Beth Israel, only to find that there was no changing table there! (I never noticed how important these were until we needed them too!)

So we marched back down Longwood Ave with Dave pushing the stroller and me holding a poop-drenched Evie in my arms as we got to 333 Longwood.  The info desk lady politely asked if I would like to use the check in kiosk, and I politely replied no, because I had a poop blowout emergency. She quickly waved us to the elevator. 

We made it to the changing table and I could finally assess the disaster at hand. I will spare you the details.  Here is Evie wearing the emergency emergency outfit because I got the first one dirty in all the cleaning.  I usually have 4 outfits in her bag, and went through 3!

I had to fill out a lot of paperwork for Evie to apply for disability (a whole new world I am learning about!), so that was our next stop to drop it off. 

Good news--the brand new cafeteria at Boston Childrens is open!  We got to test it out. There is a Starbucks, Subway, and Regina Pizzeria.  There is also a place to order a custom salad, and they have featured dishes by a chef.  All the administrators are still out on the cafeteria floor directing people and testing things out.  One told me about the fancy farro salad and the rotisserie chicken available. Another one directed me to the salmon burgers, bison burgers, and sliders.  They weren't as expensive as I thought they would be either.  Score for Childrens!  It's great to have somewhere else to eat other than Au Bon Pain!

This is us sitting in the corner near the bathroom at the cafeteria.  Luckily Evie pooped again at a more convenient setting. She was going to have to wear long sleeves on a hot day if she had another blowout, but she spared mommy this time around. Evie finished her g-tubing in the cafeteria as we finished our yummy lunches.

Evie and Uncle Dave enjoyed the interactive sensor screen in the lobby at Childrens before we left. 

We got home, and Evie drank half of her meal from the bottle!   G-tubing went a lot faster that way!  Then playtime with Uncle Dave!
Evie is back on sweet potato, after not liking butternut squash as much.  Evie kept asking for more sweet potato by opening her mouth really wide and squinting her eyes. So cute.

When Daddy came home, he showed Evie all his hats, and then put Evie's hat on her head.  She seemed to think that was a blast.

Evie took a nap while everyone else ate dinner. We had Popeye's fried chicken in honor of National Fried Chicken Day.

Evie G-tubed some more dinner, had some more sweet potato, took her medicine, and went to bed.  All in all, a good day in the life of Evie. Mommy was happy because Evie had a good bottle-drinking day again!  Hopefully this is a trend!

Happy 1 month Heart Day!

I just realized today is the one month anniversary of Evie's newly fixed heart!  She is showing herself to be much stronger.  Today she decided that she is testing how loudly she can yell in our faces.  We have no idea what she is saying, but we love hearing her "talk"!

Here she is at the GI Clinic for a follow up. 



Evie also went to a rock climbing gym for the first time!  We went with our friends J and R and Evie's Uncle Dave!


Rock climbing is surprisingly very family-oriented. Evie was not the only baby there! 

Evie is working on her own climbing--climbing of the Boppy! She hates tummy time still. Here she is just accepting the Boppy and cuddling up to it instead of pushing herself up. 



Evie, Can't wait to see what you will be able to do by your 2nd heart month day! (Don't worry, I don't think I can keep up with celebrating this every month!)






A Weekend of Firsts, and Why I Blog

These past couple of weeks, Evie had some firsts!

#1: First time in church with no major poop blowout or G-tube mishaps (i.e. beeping or throwing up during feeding).  Mommy and Daddy were ecstatic. She has now done this twice in a row!  Now we have to convince her not to talk or cry loudly when we give her a bottle.

#2: Evie's Buffet: First time eating solid foods!
Erick's aunt and cousin gave us a bunch of solid food choices and baby spoons for whenever we decided to try purees, so we were prepared.  It felt like such a big choice about which food to pick as her first food!


Erick picked carrots.  Here is how Evie felt about carrots:


Eating update: Evie has decided to keep us on our toes. One day she'll drink only 10-15 ml from her bottle per meal, and then another day she'll drink 30-50 ml.  It's been a bit frustrating because we want her to make lots of progress towards getting rid of the G-tube, but we are learning that this is part of the Evie journey!

#3: First time in her high chair!
Evie is learning that if she sits in her high chair, she gets to have yummy carrots.  As soon as she sits in the chair, she gives big smiles. This is what she thinks about that!


Grandma is here to visit, so Evie gets some extra love!  Last weekend we were in the Boston Commons, and we took the opportunity to Make Way for the Ducklings!  If you're not from Boston, you may not have heard of the book Make Way for Ducklings.  It's a great book that I hope Evie will like when she gets older.  Little known trivia fact: There is a duplicate of the duck statues in Moscow because Barbara Bush gave one to Raisa Gorbachev as part of a treaty in 1991.

Evie doesn't understand that she's supposed to look at the camera. 

Serious Part of the Post: Why I Blog.
Not only does it get my English-major creative juices flowing, but I want to use my blog to raise awareness about Down Syndrome and special needs. Before Evie was born, I really had no clue what Down Syndrome and special needs really were.   And I am still learning, but I want to share what I have learned in the hopes that you can also learn with me that kids with Down Syndrome are in most ways just like any other kid--they just have an extra chromosome.  Evie's medical issues have given her a rough start in life, but by the grace of God, she has more than come through so many obstacles, and this makes her extraordinary.  Otherwise, she is just a little baby girl who is learning to sit up and to eat solid foods (and has a lot of fans!) and whose mom dresses her up in cute outfits.

I have found that many moms who also have children with special needs start blogging in order to help others to understand what their lives are like, and also to help their friends and family know how to help them. You have all been so encouraging, and have written many messages to me about how our blog has had a positive influence for you in some way.  I realize that the Internet is a big and scary place, but the benefits of sharing certain aspects of our lives with people is more than worth it right now, so that you can know more about Down Syndrome and can know how to support Evie and her parents.


I bought Evie her first swimsuit the other day. It's a little early to take her swimming because of her healing incision, but I just couldn't help it.  And I will get to share that "first" with you all on my blog!

Here's to more "firsts!"  Thanks for sharing in our journey.


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