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

One year ago, we were already in the hospital with Evie, who was prepped for her big day.  It's not every day that your child goes in for open heart surgery. I felt terrified, excited, anxious, and confident all at the same time.   Terrified because of all the risks of heart surgery. Excited because finally my baby wouldn't be too tired from the 3 holes in her heart to do anything.  Anxious because Evie's life was in someone else's hands. Confident because Evie was already a miracle from God, and He had already shown us that she had things to do in her lifetime!  When Evie was picked up by a nurse and the nurse walked away from us to the OR, she looked over her shoulder at us and my arms felt empty.  The hours of waiting went in segments of phone calls of updates from the nurse. We wandered around the hospital, just waiting for the next call.  The hardest segment was after the call that Evie was on the bypass machine, which essentially meant that her heart ...

If you're reading this, I hope you don't have to go through heart surgery with your child.  But even if you don't, I hope that this gives you an idea of how life is in the hospital.  Before Evie's heart surgery, I was desperate for any information I could use to feel prepared to live in the hospital for a couple weeks.  Fellow parents on local Facebook groups were so helpful in speaking from their own experiences.  But I couldn't find anything online where someone wrote it all out.  So in the hopes that this helps someone, here goes. WHAT TO PACK (besides your clothes) Toiletry bag that hangs (no counter space in the bathrooms)--don't forget shampoo and conditioner and soap because none of that is provided. Photos to put on the wall Favorite stuffed animals for a touch of home and for nurses to use to prop up your child's arm or leg Foam egg crate mattress Sleep mask Ear plugs  Pillow for yourself with colored pillowcase so your pillowcase...

I have to laugh, because yesterday I showed a handful of people my daughter's chest.  I should probably not make a habit of that.  But I am just so amazed at the quick healing of her incision.  Oh, alright, I'll post another picture of how it looks today.  You convinced me. Amazing, right? In all seriousness, I want to say how humbled I am when I think of how many people are interested in how Evie is doing.  We really appreciate all the prayers and the encouragement.  People I don't even know told me they have been following my blog, because a friend of a friend told them about it. We are up past 19,000 views, and I'm pretty sure they aren't all from my mom! I posted a photo on the Zipadee Zip Facebook page of Evie in her hospital bed while snug in her Zipadee Zip , and 690 people I don't know Liked it or left a comment that they were praying for her.  Some of them asked for a blog site so they could read about her and pray more specifical...

Hi everybody! I had a nice time sleeping in my own bed last night. Nobody woke me up at all, so I woke up with a smile. Seriously, why do they think it's good to wake up a baby, strip her clothes off, and put her on a hard surface to weigh her? And don't get me started on that big cuff they put on my leg that squeezes really hard. Geez. We were all glad to leave the hospital!  Mommy and Daddy slept better than they did in the hospital too. I think we all were snoring at some point during the night! Mommy says I talk a lot and that I'm really loud. I can't help it, Mommy! I have so much ENERGY! Play with me!!! Daddy and Mommy are still trying to figure out my eating habits. I don't think it's very hard. Sometimes I'm not hungry and I just want to play with Daddy.  Other times I suddenly decide I want food and I let him know. Really loudly, so there's no question.  If they take too long, I start screaming so they'll know it's an emerg...

Evie continues to surprise us. We thought we would be here another weekend. Today is Thursday, and we were discharged this afternoon! Not only were we discharged today, but Evie drank all of the formula in her bottle quite easily!  The first time, she downed 40 ml, and the second time she drank 30 ml. While this is nothing to most babies her age, this is a huge victory for her. Thank you for your continued prayers that she would eat more and more by mouth.  Today the stitches came out of her chest. The incision is already healing quite nicely.   Evie is officially taking Sildenafil. The cardiology fellow said he will always remember us because he was surprised that a patient's dad really wanted his baby on Sildenafil, otherwise known as Viagra (if she needed to go on another medication for her pulmonary hypertension). He thought at first that Daddy was trying to get some for himself, but then found out that Evie's daddy works for Pfizer and since they make...

Last night, I woke up every 2 hours because I was afraid Evie was spitting up because she kept making gagging noises in her sleep ( lots of phlegm still). At 1:30 am I told the nurse that her oxygen levels were drifting. The nurse said, "that's because she's off oxygen." I said ok, and went back to sleep, knowing that they were seeing how she was doing in room air.  In the morning, the nurse announced we were taking off her oxygen tube. I did a double take and had to ask her to repeat herself.  She said that Evie had been breathing well on her own all night.  This is not only amazing in its own right, but also because the surgeon (let's just call him Dr. Awesome) had thought we might even have to still go home on oxygen.  Today, Dr. Awesome was surprised too!  She still needs to improve her oxygen saturation levels even more, but it's looking good! This is Evie the moment she got the oxygen tube off her face. The tape holding it on was huge, so I don't bla...

Evie and Daddy spent the first night in the Step down unit here on 8 East.  She got a mobile to look at while Daddy slept.  The mornings are always busy because the doctors and nurses do their rounds, set the plan for the day, draw labs, do chest x rays and EKG's, etc. Today's plan was to pull out the lines that would have been used for a pacemaker if she needed it. But Evie doesn't need it, so see you later, pace lines!!   When I walked in today, Evie saw me and gave me a big smile and started to tell me about her day. That is the best mommy greeting ever!  She seems to feel better today.  She's still fussy and tired, but overall looks even more herself today.  The biggest thing we want to see is that when we try her off oxygen in room air, that her oxygen saturation levels get as close to 100 as possible. Right now they are in the low 80's, which is not acceptable. It's still early, so she has time.  But that's the biggest thing you can pray for--tha...

Hi everybody! I had a good night last night!  My eyes have now stopped crossing from the strange drugs they put me on, and I see 1 mommy and daddy now and not 2 mommies and daddies.   I graduated from the ICU this afternoon! I am in a nice single room and don't have to share with another baby.  Everyone says how alert I am. Drugs can't hold me down.  This is my new room! Now I get to rest and get some more phlegm out of my chest. I still have some lines and IV's, but a lot less than before.  All the nurses think my Zipadee Zip is magical too, because I'm a lot less wiggly when I wear one.  I look pretty good, don't I? For those of you curious to see my incision, Mommy is posting it for me. If you don't like seeing those sorts of things, then don't look at the picture at the end. The nurse last night said its one of the best incisions she's ever seen! I don't know what that means. I just know I have a huge sticker on my chest. ...

Thanks for all of your prayers and good wishes. This morning when we said goodbye to her in pre-op, she was smiling and looking around. After 5 hours, Evie's surgeon met with us and said everything went smoothly. The scariest part for me was know that they had stopped her heart to put her on the bypass machine. The magic words that she was off the bypass and her heart was working on its own was music to my ears.   Now we will wait to see how her body readjusts.   We just saw her in the Cardiac Intensive Care unit, and she looks good. The faux hawk is still intact.  They don't allow pictures in the ICU, so sorry I can't show you.  We are tired, but relieved and thankful!  I can't say enough how much it meant to me to know that so many people were praying and thinking of us.  We definitely did not feel alone, and God was watching over all of us.  Evie will write again when she feels better!

Hi Mommy, This was a funny day. Last night instead of putting me to bed, you stayed up with me and played with me, and kept asking me to eat. I didn't want to eat. I wanted to play.  Then you hooked up my feeding tube early and we got in some extra cuddles. I started giggling because this was more fun than going to bed.  Sometime soon after that, I think you forgot to hook up my feeding tube like you usually do overnight. My tummy was hungry! I had to make smacking noises all night to tell you that you forgot to feed me on a continuous feed like you usually do!  You woke me up when it was still dark! Was it because you wanted to play with me, Mommy? I thought you did, so I smiled really hard at you and said a big hello!   We got in the car and Daddy and I both fell asleep. Daddy usually has as much trouble staying awake as I do!   We got to the hospital and got in a little room with a big bed for me. They stuck big stickers with wires on me, and ...