Evie the Extraordinary and Her Mommy: The Journey As We Go

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 wen...

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 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...

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 Awarene...

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 dow...

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 backp...

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!)

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 Evi...