Viagra for babies

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 on enough medications.  We were leaning towards sildenafil, but then the most well known Pulmonary specialist at the hospital was on duty in the NICU the one night we were at Boston Childrens for her G-tube surgery.  After talking with him and then our cardiologist again, oxygen was the winner.

So here we are with oxygen tanks all over our living room, and a No Smoking sign on our front door.  
B tanks and D tanks

Something that took me a couple MONTHS to figure out was that I could use the smaller regulator on Ollie the oxygen tank.  When we go out to the hospital, we take the D size tank because it lasts for 1-2 days, whereas the smaller B tank lasts only 1-2 hours. I think the D tank weighs at least 10-15 lbs.  Now look at the regulators below and tell me which one you'd rather carry on your back in addition to the oxygen tank.  I thought so. 




 I feel dumb for taking that long to switch them out. Thanks, oxygen training man, for using the heavy duty regulator when you taught me, so that I thought you had to use that. 

 I also had no idea there were 14 foot and 25 foot extension tubings for the longest time.  I think we spent a week sitting just on the couch in the living room with about a 10 foot "leash."  With the 25 foot tubing, we can actually leave the living room and go into the kitchen!!

 This oxygen condenser goes with us into the bedroom when we go to sleep.  It's on wheels, which is a good thing, because it's really heavy.  Probably about 2 1/2 times heavier than a D size oxygen tank. That is Erick's job to move it.   I can't wait for the day when she is oxygen-free and we can roam freely in the house, and I can check the mail without hooking her up to an oxygen tank and using the stroller to carry it. Hopefully after she has heart surgery in a few months!

Hanging out in the swing with Ultimate Warrior Bear and Sophie


Let's wait until it's really quiet...

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)!

Triple Threat, or Ollie and Pepe

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 rescue and untangled me, and then helped me take up FOUR chairs in the back row!  (Shoutout to Auntie Sarah K, who made sure we were settled somewhere!)

We settled in to hear a nice talk for mommies, and then POOOOOOOOOP goes the Evie.  It was so juicy and loud, that 2 rows of mommies in front of us turned around and smiled.  I thought we could sit it out and change you later, but the foul stench coming from you became too much to subject others to.  So you, me, the diaper bag, and the 20 lb. oxygen tank went to find a diaper changing table.  IT WENT UP YOUR BACK.  We had to change outfits!  By the time we finished cleaning up, the talk was almost over!

All the mommies then broke up into small groups, and I hooked you up to your G-tube for your morning feed.  We were having a nice discussion, and then POOOOOOOOOOOP.  Girl, for a tiny thing, you have such loud bodily noises!  I decided to let you sit in your carrier and change you later.

Getting to the car was even harder, because both the G-tube and the oxygen tank were connected to you.  I have decided to call your G-tube penguin bag "Pepe" and your oxygen tank "Ollie," since they travel with you everywhere.  I can't wait for the day we say goodbye to Pepe and Ollie, but for now, they are your friends.  Another nice mommy helped me carry the diaper bag to the car, so at least I had one less thing to sling over my back.

Ollie and Pepe. Pepe is a Skiphop backpack adapted for G-tube use by feediefriends on Etsy.

We got home, and thankfully you were sleeping.  I got to eat lunch, and then decided to try putting you in the Ergo 360, which is still daunting for me.  I got you all nice and snug in the Ergo, convinced you that it was ok, but then you started breathing rapidly.  I thought maybe the Ergo was bad for you.  Just as I was thinking what to do, POOOOOOOOOOOOP!  You christened the nice new Ergo!  Thankfully this was just a medium-sized poop that you did while sitting on Mommy.

Are you done yet, baby?  The day is still young!  I can either laugh or cry.  I will laugh, because I am thankful that we got to get out a bit, and that you slept nicely through most of everything.  At least you didn't spit up too.  That would have thrown me over the edge.  Now you, Ollie, and Pepe are sleeping, but Mommy can't sleep, because I have to feed you all over again in a few minutes.  But you're worth it a million times over.  Love you so much, my little girl with the big eyelashes!

Love,
Mommy



Why is Sophie the Giraffe so awesome?!

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 battery inventory has grown significantly. Someone needs to invent a solar-powered, talking stuffed animal.

4. Contrast. The spots on her body and the perfectly black circles for eyes are fun for infants to look at.  The optometrist in me loves this.

5. Touch.  The rubber is supposed to feel like mommy's skin. I just felt the giraffe again.  I hope I never feel rubbery to the touch.

6. Taste. Completely safe for baby to suck/bite. Evie loves to suck on those little ears.  I tried to get her to suck on the butt so I wouldn't have to keep putting the ears back near her mouth, but she prefers ears over the butt.

7. Size.  Apparently the 18 cm of cute giraffe-ness is the perfect size for baby to grasp.  

8. A squeak that isn't TOO annoying.

9. Oh wait--a toy that address all 5 senses?? That's amazing!

10. The rubber is collected from rubber trees in Malaysia, travels by ship to France, where it is made into latex, molded 10 giraffes at a time, cured for several days, hand-trimmed of excess rubber, and then hand-painted, tested for safety, and hand-packed. Check out this video here to see how they make them.  That totally explains to me why this is so expensive. 


11. As the video above shows, movie stars buy them, and we should too.  Remind me, if I ever invent a toy, to just send some to Beyonce, the Kardashians, and whomever has a baby at the time.

I am now always looking for toys that help my Evie develop her skills, and my conclusion is that Sophie fits the bill!  She may be a bit slower in achieving milestones, but this mommy is going to try her best to help her achieve them while having fun!  Any suggestions for toys good for development at this age would be appreciated!

Blown Away

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!


Going public: Down Syndrome Awareness Day and what it means to us.

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't trade her for the world.  We are open to talking about it, and are thankful for all the friends and family who have embraced Evie and want to meet her.  We are truly grateful for our church family, who came all the way to bring us dinner in the hospital and at home, and ooh and aah over our baby.  Evie is more than a diagnosis to us, and I know that she will be much more than that to our friends too.

Once she has open heart surgery in June for the hole in her heart, we hope that she will have much  more energy and grow much faster.  We look forward to the day where she can run freely without an oxygen cannula in her nose, and she can eat all that she needs without a tube through her stomach. 

Evie just turned 3 months old.  It seems like it went by so quickly, and yet was an eternity to get here.  You can't tell, but under the 3 months sticker on her shirt is a G-tube patch called a Tummy Tunnel.  It's basically a patch that has a hole in the center so you can cut a classy-looking hole for easier G-tube access through a onesie.  This was also her first time wearing a headband, and she "allowed" Mommy to dress her up!

Striking a pose with her girly headband and the requisite glasses shirt for her nerdy mommy

Thanks for reading and sharing Down Syndrome Awareness Day with us! Please feel free to leave a comment to bolster my confidence in writing this blog.  It feels a little funny to just be putting everything out there, knowing that people are reading this and I don't know who they are (but I guess that's what a blog is!). Thanks for reading, friends!
Waiting in the waiting room--we're here a lot.


Officially on our own today

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! 

I Wish She Could Get A Break

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!




Big Dreams and Early Intervention

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 show them all that she was a superstar and didn't need "intervention."  They reassured me that she is only 2 months old, and you can really only assess so much with an infant. But still--I'm hoping she will surprise them with her brilliance!
Working on head control, but preferring to stare at the tiger.
One thing I love about my husband is that he has faith that Evie will be extraordinary.  He is already teaching her to walk and read.  He is such a great daddy!

Walking lessons with Daddy






First Trip to the Mall!

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!

My little trooper

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! 




The Circle of Life and Hakuna Matata in the DMV

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.  This is such a help with all the gear we have.  I am so grateful!

Special Pah-king in Boston



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.
http://www.sfweekly.com/binary/37ca/largest222.jpg

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 photo taken too.
 http://ec.l.thumbs.canstockphoto.com/canstock3668682.jpg

Ok, I am being facetious. I see how people could abuse their privileges, but it really seems like such a hassle. I asked if I could bring in a picture, and apparently that could be allowed if I write a letter explaining why I couldn't bring Evie in person.  Having already had a taste of the DMV bureaucracy, I think I will just avoid all possible problems the 2nd time around, and just take her back to Quincy to have her picture taken. Maybe we can hold her oxygen tank up so it can be in the picture too. Because really it's like my 2nd child when we're out and about!

Oxygen tanks--the big one lasts about 2-3 days, and the little one lasts 2-3 hours.


I hate gas

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.

http://notreligious.typepad.com/.a/6a00e552e3404e88330147e189cceb970b-800wi

I started wondering if I had been missing out on a way to help Evie.  When I asked the GI doc about this, she said, oh sure, I'll have the nurse teach you.  I thought, why didn't they tell me about this in the first place!!!  All it involves is using a large 60 ml syringe plugged into the G-tube and letting the air come out of her stomach.  The first time I did it, I didn't take the cap off the syringe and wondered why it didn't work.  Haha.  The second time I did it, it rocked my world. The air bubbles just shot out of the tube.  Seeing stomach contents of my baby isn't such a big deal, because it's just formula.  Then you use the plunger to slowly put the stomach contents back in.  And then baby is happy, so mommy is happy!
http://i.ytimg.com/vi/gfD5J4Ok7ok/maxresdefault.jpg
from St. Louis Childrens Hospital

I kind of feel lucky that I can so definitively help my child with gas, while other mommies have to wait for the gas to work its way out.  That's one upside to having a G-tube, at least!

I now specialize in specialists

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 course the regular baby gear that we need.  Evie has a knack for peeing on me right when I pick her up to put her on the scale at the doctor's office.  Now I have spare clothes for her and a spare shirt for me.  That is a tip that someone shared with me, and it is definitely helpful.  Of course, since I put spare clothes in the diaper bag, she has not peed on me since.

Sometimes I am envious of parents who only have to take their kids to the doctors for their regular pediatrician visits.  But I am mostly thankful that we have good health insurance and the ability to get care for Evie when she needs it, and that there are people making sure she gets healthy and stays healthy. 




Summer School and Evie's G-Tube Update

When I was growing up, I thought summer school was only for children who didn't do well academically.  Now that I have a child with spec...