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

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

Dear Evie, Happy 6 months to my precious girl!  6 months ago, Mommy was both nervous and excited about this day because I knew that by then, you would probably have had open heart surgery. And now look at you--you came through beautifully and you are definitely getting stronger!  When you talk, you let everyone know you have something to say, and when you cry, the walls echo.  But I will gladly lose some hearing if that means that you are stronger and healthier. :)  Daddy thinks you will like art when you are older, because you like to stare at the artwork on every wall.  You love to suck on anything you can get your hands on. You love it when people talk to you, and give the best smiles. Mommy and Daddy are so proud of you. Keep chugging along, little Evie!  You have already done extraordinary things in the first 6 months of your life! You are 6 months stronger!!

Evie has definite musical preferences.  No, Mommy, I will not look at you while you sing The Muffin Man, and no, I do not know him.  But if you sing about that Glorious Spider going up the water spout, I will smile at you and look up into your eyes like you are a genius. With the same curiosity that led me to look up why Sophie the Giraffe is so awesome , I decided to look up the Itsy Bitsy Spider, also known as the Incy Wincy Spider. The Itsy Bitsy Spider was first published in 1910 in a camp lore book as an adult song.  Except it was originally the "Blooming Bloody Spider."  I'd much rather have a tiny spider than a bloody and expanding arachnoid, so I will keep using "Itsy Bitsy."  I found all this out from Wikipedia if you're interested. As one of our good friends (DT) pointed out, Itsy Bitsy Spider is a song about hope, which is why Evie likes it so much.  I did a quick analysis of the note in my head and it's just 5 notes over and over a

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 specifically for her

This week is our 7 year anniversary.  How did that happen? I feel like we just got married last year! Haha, I'm not sure I will ever look that way again after having Evie! While our wedding day was definitely the happiest day of my life, I think this year has been the best year of my life.  Not because it was easy, but because it has further refined us and made our lives fuller and richer. A year ago, we were just starting to tell friends and family about Evie, but also digesting the thought that Evie likely had Down Syndrome. I was downing ginger ale like it was water, and craving pineapple.  And honestly, I was struggling with a tinge of sadness whenever people congratulated me for being pregnant, because I knew there was a strong possibility that my baby would have medical issues.  But one thing was for sure--Erick and I already loved this baby, and we were a team. Today, Evie has so many people praying for her and just loving her, that I am overwhelmed with joy

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 Viagr

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--that we c

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.

The breathing tube has successfully been taken out. At first Evangeline was crying silently because her throat was so hoarse.  But she gained some steam and was letting us know that she was not happy.  I wish I could pick her up, but she still has too many lines in.  If I sing The Itsy Bitsy Spider, she stops crying and looks at me. As soon as I stop singing, her lower lip comes out and she starts crying again. I'm starting to think I should record my voice and just play it instead.  This was Evie before the tube was taken out.  This was Erick trying to keep Evie entertained, because she kept remembering she was unhappy and would cry. Thank God for Tylenol! This is Evie finally drifting off to sleep and getting some food into her tummy via g-tube. Doesn't she look more comfortable? She won't be able to try a bottle for a few more days because she is still too weak. There is also still a risk of aspiration, which means that liquids can go into her lungs when she drinks due t

Evie continued her reputation of being hard to sedate last night!  We came in this morning expecting to have her breathing tube out today, but because of her poor sedation, increased carbon dioxide levels, and slightly acidic pH if the blood, it was not safe enough to take out the breathing tube.  So the bad news is that we are set back another day, but the good news is that she still overall looks good, and mommy and daddy get to sleep at home another night.  We are still not ready for a ton of visitors yet because we are in the cardiac ICU. Hopefully things will change over the weekend and won't be so intense.  Our friends who work in the Longwood hospital area have been checking in on us, and we are so grateful.  Thanks for your continued prayers! 

Hi from the Cardiac ICU! Evie is doing ok--we are waiting on some of her puffiness to go down (i.e. Letting her pee it out).   Her blood pressure is a bit elevated too. The funny thing is, Evie won't let the sedative meds hold her down. She has been moving around quite a bit. The nurses are calling her "feisty" and "rowdy." It's good to be feisty, but not when you might pull out the tubes that are helping you!  She opens her eyes sometimes to look at me.  She's not in pain though. I keep telling her I'm sorry she has a breathing tube. The nurses assure me she is ok. But they don't want her to be so awake that she's moving around.   They propped her up with Pink Dog and Ultimate Warrior Bear, so she is now nice and snuggly. (Shoutout to Doug for coming to tell me that I am allowed to take pictures!) Now the team is discussing how to keep her sedated safely. This baby burns through the drugs like they're nothing! That's my strong girl!