The winner of the Zipadee Zip giveaway!

Thanks to all those who entered my first giveaway!  The winner is Monique E.!

Baby Evie says congrats!

We are getting ready to be in and out (and in) of the hospital this week.  I've gotten so much good advice from other moms who have done this, and I'm looking forward to posting what I've learned.  Thanks for your prayers!

A Day in Pre-Op

Pre-Op day for Evie went pretty smoothly overall.  However, we started the day with much of the county losing electricity right before we were going to take the elevator down to the garage.  Thankfully we weren't IN the elevator when the power went out, but this obviously cramped our style, as we had to carry everything and Evie down 7 flights of stairs.

The morning rush hour traffic in Boston is never pretty either. We were 30 min late for our 7:30 am arrival time, but the staff in Cardiology Pre-Op were so awesome and welcoming when we arrived.

1st stop: Lab workup
Evie, Pepe (feeding pump), and Ollie (oxygen tank) were wheeled down to the outpatient lab.  This brave girl did not make a peep when the very competent phlebotomist put in the needle.  She usually screeches, so I was really impressed. Her assistant kept stroking Evie's head and telling her how cute she was.  Then she asked me where Evie's earrings were. Um...haha.  I told her not until Evie is a teenager.   I know in the Latino culture, babies get their ears pierced, and I said so.  They were very excited to tell me that the reason is that it hurts less when they are babies.  I think now they think that it's an Asian thing to wait until the child is a teenager. Still...Evie will have to earn the privilege just like I did!  To me, it's a rite of passage.

2nd stop: Chest X-ray
Evie got laid on a humongous table bigger than most kitchen islands.  I undressed her and then put her on a little platform where the technician put on the x-ray plates.  While I wore a protective apron, I had to hold her with her arms up tightly against her head, and her head straight.  Evie did NOT like that.  Check that off the list!

3rd stop: Height and Weight, EKG
 Evie got weighed (and continues to grow nicely), and got her BP and O2 sats checked.  She also got an EKG.  Evie is so good with EKG's. This time, she was not only well behaved with all those electrodes on her, she was actually giggling and laughing!  We'll take it--whatever it is that is making her think it's fun!

4th stop: Nurse Practitioner
We reviewed Evie's medical issues, meds, and allergies.  Everything seemed to be in order!  At this point my 5:45 am wakeup time started to hit me and I have to admit that I don't remember much about our conversation!

5th stop: Tour of ICU and Cardiac Unit
You have to ask for this. But I was advised by some awesome mommies who have already been through this that we should ask for a tour.   I am so glad that we did.  I think our tour guide was the director of Child Life at Childrens.  She knew everyone! We visited both the Catheterization wing and the Cardiac ICU, because Evie will have a stay in both.  I was impressed with the play room in one of the units.  There were toys for all ages, including babies, and books galore. We are excited to have books at our disposal to read to her.   I was also glad to see what the sleeping situation looks like.  It's looking like my husband and I will have to switch off sleeping in her room.

6th stop: Visit with Social Worker
I was also advised to ask for a social worker.  Just to talk about services available for us.  I think I asked for this too early. It makes more sense to ask for a social worker when we are in the ICU, and not just for a catheterization.  But she was another nice person to meet, so we were happy. 

7th stop (are we done yet?): Consent signing
A physician assistant (I think) went through the catheterization procedure with us, and we signed the forms of consent. We talked about the risks and what would happen the day of.

8th stop: Cardiology Fellow
We love our cardiologists.  They are so responsive, and answer my emails that I write at 1 am in the morning.  We met again with the cardiology fellow (who has 5 month old twins of his own) and talked about the overall picture.  As he said, it is exciting and scary at the same time. But we are on our way to a healthier Evie!

Amazingly, although we were told to prepare for a 6-8 hour day, we were out by 1 pm.  And on our way out, we stopped at the Prouty Garden.  I definitely  want to walk around here to take advantage of it before it is taken away for more clinical space. 

Being at the hospital is overwhelming, as much as we are there so often.  It's easy to get lost just finding a bathroom (both Erick and I have gotten lost before!). While the NICU stay when she was born has prepared us a little, this is going to be quite an adjustment.  

Thanks for your prayers this week as Evie  goes through quite a lot (as do her parents!). 

Repost with a giveaway! From Straitjacket to Starfish: A Shark Tank win

Update:   Hi all, I am doing my first giveaway! If you read my blog post the other day on the miraculous Zipadee Zip, then you know how this thing has changed our lives as parents.  The makers of Zipadee Zip liked my review so much, that they offered to help me do a giveaway.

All you have to do is 1) "Like" their Zipadee Zip Facebook page and 2) leave a comment about why you could use a free Zipadee Zip on this post!

The contest begins Wednesday, May 27 at 12:00 AM and ends on Sunday, May 31 at 12:00 AM.  Good luck!

a Rafflecopter giveaway
Original post: There was a point in time when I was just proud I could swaddle teeny tiny Evie with a hospital blanket.

Then she came home and started busting out of the blankets, and woke herself up all the time. Her arms flailed and her legs kicked while she was sleeping, which of course woke her up.
But then she got bigger and craftier, and I needed to find something else to keep her feeling secure and keep her arms tucked away. So we switched to Swaddle Me sacks we had inherited from friends.

 I used to feel badly about swaddling her so tightly especially when she struggled, but now I give you the following reasons for what some might call baby straitjackets:
1. The Startle Reflex (otherwise known as the Moro reflex). Babies startle easily from loud noises or the sensation of falling.  We did a 30 minute trial of no restraint, and she woke herself up at least 5 times. We quickly gave up because we wanted to actually sleep at night. Evie will punch herself all night if we let her--her reflexes are quite strong and she sleeps for 10 minutes at a time at night if not swaddled properly.  She has broken out of the Swaddle Me before and kept us up at night.
2. If you spent 9 months in a womb and then had to sleep all free in a flat bed, you might feel a little less cozy too.  Oh wait--you did spend 9 months in a womb. I'm guessing you sleep in nice blankets now. But babies can't do that, because of the risk of SIDS (Sudden Infant Death Syndrome). 
3. Add in a g-tube that, if pulled out by a resourceful baby, would cost you a trip to the ER to keep the hole to her stomach from closing up within a two-hour window.  That would make you want to restrain her arms for her own safety and your sanity.
4. Oxygen tubes everywhere = strangling hazard. Enough said.

I adapted the Swaddle Me sacks by cutting a hole through the bottom along the seam to allow the g-tube to go through for her overnight feeds. This worked until...Evie started to get strong enough to poke her hand through looser areas overnight. I began to research other swaddles, but the other ones weren't as adaptable for the g-tube. 

And then I ran across this amazing thing on a Facebook group for mommies. It's the Zipadee Zip. 
It has changed our lives.
This zip up garment is meant to simulate the safety of the womb and be a transition from swaddling. And it makes your kid look like a starfish.  The creators of the Zipadee Zip went on Shark Tank and went big time.  Their story is pretty cool too.

Oblivious sleep in her Zipadee Zip. Of course I got the penguin pattern!
The first time I put this on Evie, she smiled and waved her arms happily. I thought that was cute, but didn't think much of it. The next day I put her in it for a nap, and she slept for 2 hours instead of 30 minutes. And then I decided to try it overnight and I was completely sold. We put her in her pack and play and that was the first time I heard her giggle. She just laid there waving her arms around and giggling at me. And then she slept through the night without grunting. 

The other miraculous thing is that the Zipadee Zip has helped us with bottle feeding. Evie is a very poky bottle feeder and literally drinks about 1/2 an ounce with crying and sputtering, and then stops drinking.  I put her in the Zipadee Zip now to feed, and she is more calm and controlled when she drinks.

Two weeks later of using the Zipadee Zip (which Erick likes to call the "Magic Sack" to annoy me--it sounds so unclassy), Evie is still sleeping through the night. She naps in this thing too.  It's amazing how she can still move her arms, but doesn't wake herself up anymore. 

Where can you get one of these, you ask? The Zipadee Zip is available here:
Napping in a Zipadee Zip = Precious Mommy work time
I can't say enough about these. They can literally change a parent's life if their child has trouble with the conventional swaddling blankets, has trouble concentrating to eat, or has tubes all over the place like ours.

I wasn't paid for this post! I just want to spread the word about these awesome things. I hear that they are great in the hospital too, so we will try them out in a couple weeks for her surgery stay.  I've already bought 6 of these, because unfortunately--as magical as these are--I can't stop her from pooping in them sometimes.

So there you have it--from Straitjacket to Starfish. Thank you, Shark Tank and the Parker Family, for bringing this wonderful product to the masses.

Our favorite books and Reading Rainbow

Evie and her daddy like to read books together every evening.  She is well versed in the adventures of Caillou, Moo La La, Goodnight Moon, and Sophie the Giraffe (yes, Sophie also has a book).

Early on, I decided that I would make a scrapbook about how we prepared for her to arrive, so we could read it to her. Thanks to Shutterfly, I could tell Evie the story of how Mommy and Daddy got ready to meet her.  Erick has already been reading the book to her.  I hope that by reading it, she will know how much she is loved! 

The first page of the book.

Some of our current favorites books are "Daddy Hugs 1-2-3" and "Chicka Chicka Boom Boom."  Our absolute favorite right now is called "God Gave Us You."  It makes me want to cry every time I read it with her. 
 "God Gave Us You" is about a baby polar bear asking his mommy where he came from, and she tells him throughout the book how excited they were to meet him and how they prepared for him.  He asks if they might have preferred Samuel the Seal or Frederica the Fox, but Mama Bear says no, because "God gave us you." Having waited so long for Evie, this book is especially poignant. I feel exactly the same way about Evie, and wouldn't trade her for the world.   

Shameless link to Amazon, because you know you want this book now for your next baby shower gift!

This love of books brings me to Reading Rainbow.  I miss this show.   There's nothing like Levar Burton reading a book. So I googled it and was pleased to find out that Reading Rainbow is back in the form of an app.  Now Evie will get to watch Levar Burton as well!

A sample for your viewing pleasure--Goldyluck and the Three Bears, read by Levar Burton while he sits in Chinatown in Los Angeles.  Pandas, a little Chinese girl, and Levar Burton. How can you go wrong?

8 more days until Evie's surgery on June 3!  We will be reading lots of books to her while she is in the hospital bed!

5 months, and photo bloopers

Evie was less than cooperative during our photo shoot, but I am making the most out of the shots I got with her eyes open! 

If I'm going to be open and real in this blog, I have to show you what happens behind the scenes.  Evie fell over on the fluffy pillows, lifted her dress at the wrong times, and tried to eat the 5 month sticker. 

Evie is going to be the kid in the front row of the Children's Christmas Choir who lifts up her dress during the performance.

Blue Steel

Mommy, do I have to do this anymore?

This is really getting old.
Can we go now?
I am SO bored.
I call this "Living with Abandon"

Happy 5 months, Evie!  Mommy and Daddy love you so much!  Next month you will have a stronger heart and we will say goodbye to Ollie the oxygen tank!!

Teeny tiny ears

Today we woke up an hour earlier than usual to make sure Evie was hungry and tired.  We drove to Childrens Hospital Lexington and I kept tickling her to try to keep her awake.  I failed--she started dozing off even with Mommy singing the Itsy Bitsy Spider in her face.

Back when Evie was in the NICU, we were told she failed the hearing screening twice.  I was sad that there was yet another thing that she had to go through (and to go to a specialist for).  Today, the audiologist took us in to a tiny room that looked like a bank vault, and we settled in to do a full hearing evaluation.  Evie's previous 2 evaluations had been pretty inconclusive (and thus "screening fails") because her ear canals were too small and her snoring interfered with the tests.  (Thankfully she doesn't snore like a tugboat anymore!)

Tiny tiny ear canals in the NICU

In the last few months, I've become darn sure that she could hear everything because I had to walk around like a ninja to avoid disturbing her naps.  But when someone tells you that your baby failed a screening, there's always a tiny doubt in the back of your mind that maybe there's still something wrong. 

I love these ears.
Right when we were supposed to settle down in the rocking chair in the sound proof bank vault, Evie perked up and started look around. It took awhile to settle her down, and then she refused to sleep in the position we needed her in for the several electrodes and ear probe.  Mommy was afraid to move in case Evie woke up.

2 hours later, when my arms were sore and my back hurt, I heard the magic words--"Her hearing is normal."  SO thankful for a normal test!  I hope we have more of these normal tests in the next few months!!

And now...I'd better tiptoe my way over to the kitchen for a snack.

Evie and the Good, Terrible, No Good, Very Good Mother's Day

My first Mother's Day was both great and terrible at the same time.

For Mother's Day, I got horrible stomach cramps (not contagious) and Erick came down with a fever and sore throat.  My visions of wearing a pretty dress to church and having Evie wear a cute outfit as well were quickly dashed. No nice Mother's Day lunch either.  Erick couldn't even go near Evie for fear that she would get sick.  If she gets sick close to her surgery date, they won't do her heart surgery for obvious reasons.

So I hobbled around the house while doubled over, and made sure Evie got fed and stayed alive this weekend.  I don't think she had any idea how incapacitated her parents were. Ah, the life of a baby!  

Look! More hair!

May I now take the opportunity to salute single moms or moms who have husbands who don't lift a finger. I salute you over and over again, because I barely survived 2 days having to do things myself. 

By the end of yesterday, I had hired a babysitter/good friend to watch Evie and went to buy medical face masks so Erick could at least help out a bit more now that his fever was gone.   I truly felt bad for him, because he couldn't kiss Evie's chubby cheeks and it was killing him.  The love of a dad.

For a minute, I wallowed in self pity that my first Mother's Day was not what I had envisioned.  

And then I realized that I wouldn't trade my temporary misery for anything else, because Evie is the best gift I could ask for. For my Mother's Day, I got to spend the day with my baby daughter, and she rewarded me with some giggles at my funny faces.  Her laughter is like gold to me!  

This morning, as I drove to one of our countless appointments at Boston Childrens, I just thanked God that I get to be Evie's mommy.  She was worth the long wait!  

At the bottom of this post is a Youtube video of "Beautiful Things" by Gungor.  I already liked the song, but found out from a friend with her own extraordinary boy that the lead singers of Gungor wrote this song when their child was born with Down Syndrome.  I used to play this song during my drive to work, thinking about how our lives would be so different with or without Down Syndrome, but that I knew Evie would be our beautiful gift. Now the song is even more special to me.

Evie showing off flowers for me from my thoughtful sister-in-law
A postscript: I would like to thank my husband, who does everything he can to be a partner in raising Evie, and who makes sure I have a moment to myself each day so I don't go crazy.  He got me a new phone and bought me a takeout steak dinner despite being out of it on Dayquil. 

A post by Evie: From my point of view

Hi everyone!
Mommy said I could write a post, because she thinks it's funny that I find certain things so amusing to look at.   I want to share what I look at and why they are so wonderful. 

First, this amazing square on the ceiling. It's a geometric wonder. And everyone knows babies like black and white contrast, so I'm not sure why mommy thinks this is so funny. 

Then there's the view from the sofa while Daddy watches TV.  Why wouldn't I stare at this beautiful dark wood?  Daddy loves this bar table. Mommy at first didn't like it and tried to put it off to the side, but now she admits that Daddy is right and the table is useful for eating breakfast and watching me while she eats.  Look at that carpet with its geometric shapes!  Ikea makes works of art!

This is my view when I get my diaper changed, or Mommy changes my g-tube dressings every night.  I get very excited to see my dust bunny friends.  Fortunately for me, Mommy and Daddy don't have much time to clean the dust bunnies away.

Here's one of my absolute favorites.
Mommy doesn't like this picture above the sofa very much, but I love to stare at it.  It's such a nice white border around the frame. I haven't seen an ocean or lake yet, but it seems nice.  Daddy got it in his bachelor days, but Mommy would rather have something else that goes with her color scheme.  Everyone who comes over tends to say they like the picture though, so Mommy is stuck with it. I am very happy about this. 

Another thing that makes me happy is Jacques the Peacock. Auntie Anissa sent  it to me, and I love to stare at Jacques. 

As usual, I am hugging Sophie the Giraffe. She goes wherever I go!  Daddy gives her a bath every night, but water got inside and she lost her squeaky voice. No matter, I have found my voice and like to say all sorts of things for me and Sophie!

Thank you for taking this tour of "Evie's wonderful views!" 


Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about mak...