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

I bet the title got your attention.  When Evie was still in the NICU, we were offered the option of Sildenafil, otherwise known as Viagra, for helping Evie's pulmonary hypertension.  Basically the tiny dose of Sildenafil would help to dilate the vessels to help the oxygen saturation in her blood. (I think.)   Apparently insurance companies get confused when Viagra is prescribed for a baby girl.  The nurse said that sometimes they call and ask if the diagnosis was supposed to be erectile dysfunction.  Yes, ma'am, because a baby girl would have erectile dysfunction.  The other option was oxygen, not because she can't breathe, but because it helps her oxygen saturation levels (i.e. amt of oxygen in her blood) get closer to 100%.  It was tempting to choose Viagra because then we could take pictures without an oxygen cannula in the way.  But Viagra is still a medication, while oxygen is something more benign.  God knows that Evie is already...

This blog isn't all about poop and gas, but I can't resist. Today was our second time at church with Evie.   This time she was awake for most of the service, and sat on Daddy's lap.  As the pastor was preaching, and all was quiet except for his voice, Evie let one rip. TOOOOOT! It was an adult-sized fart that seemed to echo.  People around us giggled.  Erick pointed at Evie. A pastor who shall remain nameless whispered, "Nice job, Erick!" I blame the probiotics. We are trying half a packet of Culturelle for Kids in her nightly g-tube feeding to help her be less gassy. So far she is still gassy--just louder! We'll give the probiotics a little longer to work though. Maybe she's just clearing out her system. Evie's yawn has no bearing on the quality of the sermon. It was a very good sermon! Getting better at taking Ollie the oxygen to church! You wouldn't even know it was there (until you almost trip)!

Dear Evie, Today was Mommy's first foray out into the world for something other than a doctor's appointment, with just you and me.  We woke up early to go to a moms' group at church.  Daddy helped us load into the car. We rolled up into the handicap spot, which was nice, but that's when things got tricky. First, Mommy put your oxygen tank on the side of the car that had oncoming traffic.  So that had to be remedied before getting anything out of the car. Then, once Mommy had slung her purse, your G-tube penguin backpack, the oxygen tank, and the diaper bag over her shoulder, she pulled your carrier out of the car.  The front door was only about 100 yards away, but it seemed like forever.  I got to the top of the stairs to join the other mommies, but I immediately got the oxygen tube caught on the stair rail, and then had trouble lifting you over the rail.  I was terrified I would drop you down the stairs.  Thankfully, some other mommies ran to my re...

My husband and I had a discussion about why Sophie the Giraffe is so beloved and effective, yet so simple.  This rubber giraffe is $18-25, and Erick was just astounded that it is so expensive.  I told him that EVERYONE has this giraffe, and he asked why it was so special.  This post is dedicated to my dear husband. A rare photo without her oxygen cannula Evie LOVES Sophie.  So the question is why? 1. Who wouldn't love a toy with its own Wikipedia entry and Facebook page?  I knew Sophie was French, but had no idea she was so old.   2.  Why not a penguin, a duck, or an elephant?  It's the neck.  A giraffe has the perfectly sized neck for an infant to grab and practice motor skills.  Then why not an ostrich?  The neck is too skinny, and no ears for baby to suck on! (You can tell I am sleep deprived, because I am thinking of the ideal animal for a rubber toy.) 3. No batteries required.  Since Evie was born, our batt...

Thanks so much, everyone, for your comments and the encouragement for writing this blog.  Each "Like" and comment means so much to me.  I am inspired to keep writing about my extraordinary girl and our journey.  Hopefully Evie will take a few good naps each day so I can keep this up!

Starting this blog was a big deal for me. It's hard to throw out there in conversation that my baby girl has Down Syndrome, because that extra chromosome makes people view her differently. But because it is Down Syndrome Awareness Day on 3/21, I'm going public. Do you know why it's on the 21st?  Because of the 21st chromosome having an extra copy! So far, Evie has just been our beautiful baby girl who is learning to smile and reach for things. But as she grows older, I want our extended circle of friends to know, so that they can treat her as a typical little girl who may be a little delayed in her development, but will want to be included just like other kids.  I want the other kids to play with her and to learn that little girls with disabilities like to have fun too. Our story about our diagnosis is here .   Now that we've met Evie and know what we're dealing with, it's not SO scary as it was before.  Still overwhelming sometimes , but I wouldn'...

My mother-in-law leaves today!  She's been here for 6 weeks, and before that my mom was here for 3 weeks.  I haven't had to think about what to eat for lunch or dinner, and I've been able to get my errands done efficiently, because Grandma knows how to clamp and disconnect a G-tube bag.  Yay for grandmas. And now, Evie and I will drive Grandma to the airport, and now there will be no one in the backseat to shush her when she's crying, and no one to hand me the oxygen tank when I pull out her carrier.  But I think I'm getting it down. I just need to build in more time to maneuver everything.  Behold, my new "do you have everything" list: Not your average list, but it gets the job done! 

Poor Evie.  All babies need to eat, sleep, and poop.  Yet she has trouble eating, and when she just wants to sleep, we make her wake up to eat by mouth or G-tube, and then she has trouble pooping sometimes. (Yes, we give her prune juice.) Today was an epic poop while sitting on Daddy.  I refuse to post pictures of poop, so lucky you!  And Daddy made Mommy change the diaper because Mommy was laughing too hard at Daddy making faces at the smell. Evie and Daddy, about 5 minutes before she gave Daddy a "present." On top of that, somehow her G-tube site got infected last night, and she has to go back on Keflex, which upsets her little tummy.  Poor baby! I can't wait until she can just eat, sleep, and poop in peace without needing to have medication, new dressings, or formula pumped into her stomach.  Here is a my favorite video of her, just to cheer myself up. Hope it cheers you too!

Today was our first Early Intervention visit.  I never really understood what EI was for until my friends needed it for their preemies.  Then when we had our DS diagnosis, I fully understood the extent of this service.  2 weeks ago, a very nice team of therapists and social workers came to our living room and played with Evie and asked me questions.  They then wrote an extensive report of their assessment of her history and current skills (as a 10 week old!), and said they would be in touch. Today we met our Occupational Therapist who will come to our home each week to play with Evie and help her to develop her motor and social skills.  I was looking forward to this with anticipation, since this person will be part of our lives on a weekly basis for 3 years. As a DS kid, she is expected to be delayed in some of these skills.  As a 2 month old, they were looking for skills like neck control and looking at various stimuli.  I was rooting for her to ...

Evie went to the mall for the first time a week ago! She slept through lunch at The Cheesecake Factory and a tour of all baby clothing stores at Cambridgeside Mall.  I woke her up on a bench in front of Sears to feed her a bottle and then set up her G-tube. This was actually a big deal for us, because I was testing out G-tubing on the go.  I rigged a lunch cooler so that I could tie a G-tube bag inside of it and set the feeding pump in the front pocket.   It worked ok, but the logistics of putting the G-tube on, priming it on a bench, and then getting her in the carrier without tangling the oxygen tubes and the G-tube was still pretty hard.  I'm waiting for sleep deprivation to make me forget something vital like clamping the tube and having formula from her stomach spray everywhere!  Good to be out in society!

This past Friday, we spent 4 hours in the Cardiology Dept at Boston Childrens. A 12:30 appointment for an Echo, EKG, chest x-ray, and meeting with the doctor. Whew!  The month has been set for her open heart surgery to fix the hope on her heart.  Looking forward to after June so my baby can be stronger! 

My daughter is a trooper. She had a Nutrition appointment, then a GI appointment, got blood drawn, G-tubed in the car in her car seat, and then went to the DMV for a photo op.  In case you're wondering what it looks like for an infant to have her photo taken for a handicapped placard after a long morning, here it is: I am smiling really hard behind her because I think it's hilarious that I'm holding her up like in the Lion King when they sing Circle of Life.  This is after we walked in and saw all the chairs in the waiting room full of elderly folks who needed their handicapped placards.  I was told the wait was at least an hour long.  Hakuna Matata...we decided to stick it out.  And then 10 minutes later, the most amazing DMV employee came out, handed out handicapped placards to ALL of the people in the room, and then the room was empty!  I love you, DMV employee!! Today we get to use a handicapped space with the new placard if we need to.  Th...

One of the nicest things the NICU attending did for us was to send us home with a form filled out for a temporary  handicapped parking placard. I guess when you have an oxygen tank in the car, this makes you eligible. I didn't have time to go to the DMV, so I sent the form in the mail.  That was my first mistake. More than a month later, after countless appointments where a handicapped parking space with the baby and the oxygen tank might have been nice, I still hadn't received my handicapped placard in the mail.  I called and they said I could come in person to get it done, since they were backlogged. So today I went to the DMV Medical Affairs Office in Quincy.  I waited an hour for a lady to come and hand me an envelope and tell me that I was approved, but I needed to take my baby to the DMV to have her photo taken.  So I guess my second mistake was not asking if I had to bring my baby. Because she might drive the car, and she should have her phot...

When your baby is screaming in pain, there is nothing you wouldn't do to make their pain stop.  With G-tubing, poor Evie gets more gas than usual in her little tummy.  Having been pregnant, I know a thing or two about super gas, so I felt for her. For some reason no one told me about venting with a G-tube after she had the surgery.  So at first we tried gripe water and gas relief drops (simethicone).  Gripe water did nothing, and also made her choke.  Simethicone is actually a beautiful thing, but only gave her temporary relief.  Bicycling her legs helped a bit, but really it's not good enough for a g-tube baby. Enter addicted-to-the-Internet mommy.  I've been reading all that I can find about gas and about G-tubes.  I started to read about people "venting," and they weren't talking about all the snow we have been getting. I started wondering if I had been missing out on a way to help Evie.  When I asked the GI doc about this, she sai...

Since the end of January, Evie and I (and both grandmas) have seen the following specialists: GI Nutrition Cardiology Audiology Endocrinology Feeding and Swallowing Clinic ENT Early Intervention Pediatrician Oxygen Training G-Tube Training Just an excuse to put up a pic of the cast from ER...ah, those were the days. While seeing so many doctors is exhausting, I also feel blessed that we live in a city dense with talented providers who are at the top of their game, and who are working in facilities with high standards.   It's pretty tiring to go to an appointment in downtown Boston.  I have to give myself 3 hours to wake up, get ready, and drive us to the hospital.  After the #snowpocalypse, the traffic was even worse.  But we still have it good--I met one family who drove 3 hours from Tewksbury to Boston.  That is not supposed to take 3 hours. Each time we go out, we have an oxygen tank and a cooler with her G-tube kit, and of cours...