Day 23: A Wagon Ride!

Evie got to go on a wagon ride around the 3rd floor today! Woo-hoo, something different to do! Her nurse today was Patty, who herself was a patient of Dr. Ilbawi in the past. She has a T-shirt that says "Ilbawi Alumni" and she gave Evie a onesie that says it, too. Patty is WONDERFUL. She unhooked Evie from her leads, hooked her up to a portable oxygen tank, and off we went!

Evie is sitting in her wagon, ready to go:


I know that Evie was interested in riding around the floor and seeing the other babies (by the way, she is the oldest baby in the heart unit right now. We passed 8 other teeny tiny babies!). But for most of the ride she didn't smile and looked bored. Luckily, she got to take another wagon ride later on, when Nana & Grandpa Cermak were there, and she was more animated that time.


After her ride, she got a respiratory treatment and then fell asleep:


Then Auntie Clare came for a visit and brought Evie more jewelry to play with:

My baby girl:

I love her grin and sticking-out tongue here!

Day 22: Steady Improvement

I apologize to all our loyal blog readers: I gave you incorrect information yesterday about Evie's feeding tube. The tube she has is called a nasojejunal (NJ) tube. This one goes farther into her digestive system, into her small intestine, thus bypassing her stomach and eliminating the possability that she'll spit up the formula. The doctors need to check placement of the tube with an X-Ray and use a guide wire to insert it. That means that I can't reinsert it if she pulls it out at home!

Hopefully she won't need it for long. She just needs to eat more. The nurses told us that her stomach has shrunk after being on IV fluids for over 2 weeks. I just know she will eat better at home, in her high chair next to Gavin!

She should be able to come home some time next week, but we have no idea what day. The doctors want to see her lungs improve and they also need to completely wean her off methadone. She is improving slowly and steadily every day, and her doctors and nurses keep telling us how great she looks. Francis and I are happy to hear this, but it is getting really frustrating to hear it and to not be able to take her home yet.

Here you can see all of Evie's scars:



The nurses removed all of her bandages yesterday. I think her incision looks just like her previous two incisions did initially, and by now they have healed so well you can barely see them.

Here is Evie playing with her jewelry:

Day 21: The NG Tube Is Back

Today Evie slept for the first two hours of my visit. She apparently did not fall asleep until 3:30 am the night before! Her nurse said she wasn't fussing, just playing and looking around.

Her triple-lumen central line (the IV just below her collarbone) was removed today because an infection was found in it. They don't know yet exactly what infection it is, so we're waiting for the cultures on it. Thank goodness it is not the infection she had last year (Klebsiella)! They had to put an IV line in her ankle though, to compensate for taking the other one out.

Below, the purple things Evie is holding are little gel filled pads that heat up. The nurse put them on her feet to help her veins become easier for Dr. VanBergen to get her new IV line in. They are supposed to be on her hands as well, in case he needed to use a vein in her wrist or arm, but she pulled them off and played with them instead:

You can see the pads on her feet:

Evie ate well today, but unfortunately had a great big barf around 6:30 pm. The doctors put a nasogastric (NG) tube down her nose and into her stomach. She has had these before when she wasn't eating (or keeping down) very much food. The hope is that she will keep it down with the tube. (I am NOT looking for ward to inserting that tube again myself, but I want her home so badly that I 'll take her anyway I can get her, NG tube or not!)

At home, Uncle Kevin and Gavin share a reflective moment:

Then, the silliness ensued! Gavin got a tase of flying and LOVED it:

"Again, Uncle Kevin, again!"

Day 20: Solid Food

It has been over 48 hours since Evie acquired her Auntie Clare's bracelets, and she is still holding onto them. You can see it in all the photos below! Her nurse told me that during morning rounds, Evie threw one of them at Dr. Ilbawi! He definately got it right (last year, when she was there for her first surgery) when he said that she "has a lot of character."

I gave her applesauce today and she kept it down. She had some big poops, too, which made everyone happy. She got another chest physical therapy "vibes" treatment, below. The tool that the respiratory therapist is holding vibrates some of the junk in her chest to loosen it up.

After her treatment, I thought she was going to take a nap, but she only dozed for 15 minutes or so and then she was looking around:

My baby girl!

A smile for her Uncle David, who was able to visit today:

Here is a video of her playing with her bracelets:

Here she is turning pages in her book while Uncle David held it:

Day 19: Chest Tube is Out

Here is Evie sleeping peacefully today after getting a dose of Ativan (a drug used along with methadone to wean her from the narcotic painkillers). Her chest tube was removed today with no problems. Notice her wrists and hands: she is still clutching the pink and black bracelets from Auntie Clare! It's been over 24 hours and she hasn't let go of them - awww! We read some stories today and Evie turned the pages while holding onto her jewelry.

Today I gave her a bottle of half apple juice/ half water. Her nurse said it would be easier for her to keep that down than formula, and so far it seems to be working. We need her to keep on eating (and no more barfing) and to breathe a little easier (her breathing is still a little fast.) I played peek-a-boo with her today a got a giggle out of her. We can't wait to have her home!

Day 18: First Bottle, First Barf

Today I got to give Evie a bottle, which she gulped down as if she hadn't eaten real food in weeks (18 days)! Unfortunately, about 5 minutes later it all came back up. Oh, well. Her nurse was going to try again later in the day.

Today she started chest physical therapy (CPT) to help her cough more of that junk up. She still needs to be suctioned several times a day, which of course she hates. Auntie Clare visited today and got to see the barf and the suctioning - lucky her! But she also let Evie wear her bracelets, which Evie LOVED. She wouldn't give them back!

The plan is for Evie's chest tube to come out tomorrow. Her lungs still need to get stronger, and she needs to wean off of the methadone and start eating. The sooner these things happen, the sooner she can come home!

When I got home from the hospital, we had a play date with our twin buddies Jonathan and Douglas and their mom Julie. They were born a month after Evie and Gavin, and we met in our prenatal "Marvelous Multiples" class. It was a lot of fun having three little boys running around the house (it was like having three Gavins)! I'm not sure what Evie would have thought, but we'll find out soon enough.

Banging on the back door - a favorite pastime in our house!

Starbucks cups were a big hit:

Gavin and Douglas:

Gavin and Jonathan were very interested in the high chair:

Gavin and Jonathan wait while Douglas gets into the car. When Evie gets better, we'll play again!

Day 17: Evie "Turns A Corner" and Gavin Turns Into "Baby Hercules"

Very good news to day from Dr. Van Bergen: in his exact words, Evie "has turned a corner." She was breathing easier today, so they were able to reduce the amount of oxygen they are giving her through the cannula. She needed a lot of sleep today, and she slept peacefully, not fitfully. When she was awake, she was alert and didn't look so "spacey," and also had less trembling in her hands.

Here she is with Grandpa Cermak. She was alert, but very mellow, and it wasn't long before she needed another nap:

With Nana Cermak:

The other day I came downstairs to find Gavin shoving the pack-n-play all over the place. Francis said, "Check out Baby Hercules over here!"

Gavin is so strong - the only furniture he hasn't moved are the couches and coffee table!

Here is our little action hero. We love the look of concentration on his face!

Day 16: A Smile!

Today Uncle David and I went to see Evie. She was connected to two fewer things: her catheter and one of her IV lines. Each day now, she will be hooked up to less lines. The nurses placed this toy bar in her crib, to play with and also to help with her coordination - she is still shaky from her painkiller withdrawl.

"Gee, it's good to see you, Uncle David!"


We got a smile out of her!!!!


Evie looks at her photo books of Gavin. The nurses told us she was kissing the books during morning rounds:


I got to hold her again today:

The photo below is from about one year ago. (Today is the anniversary of her first surgery.) Look at how she has grown!

Evie was acting silly, putting her photo book on her head. She also pulled out one of her hair bows:

She held tight to her photos of Gavin and was not interesed in any other toys. Auntie Di and Uncle Kevin visited later in the day and they said she was still holding onto those photos!

"I miss my brother!"

Evie and her uncle:

"I want my photos back, Uncle David!"

Here is a video of her looking at her photos:

Day 15: A Magical Hour, A Great Day!

Here is Evie, glaring at her nurse after getting suctioned - notice also that she no longer has that rectangular sensor stuck to her forehead (she pulled it off):


Notice anything else??? No more breathing tube in her mouth! She was taken off her ventilator this morning - another huge step!

And the best part - her nurse let me hold her, even though she is still attached to six things:


Ah, finally - resting with Mommy!


It is hard for me to describe how good it felt to hold her. I decided it was kind of like when I was pregnant: I couldn't wait to hold the twins and would imagine what it would be like. Then, when they were born and I gazed into their sweet faces, I felt a rush of emotion. I couldn't stop looking at her cute little face and I cherished every second that she was in my arms today.

Evie may look "out of it" to some of you, but to us and her doctors, she looks wonderful. She is going through withdrawl from her painkillers so her hands are shaky and a bit uncoordinated. She is also working hard to breathe, because the ventilator has been doing the work of her lungs for 2 weeks. She sounds raspy and has yucky secretions in her throat that need to be suctioned out. All these things are not uncommon and will improve in the next few days.

I was glad she wanted to sit up in my lap, because that will help her cough some of that stuff up. Also, she was watching everyone walk by in the hallway and playing with her plastic rings. Then she started yawning and getting sleepy:

The next steps are to take out her catheter and her groin IV line tomorrow (Saturday), and also give her formula through her NG tube. Uncle David and I are going to drive through tomorrow's predicted snowstorm to see her - we can't wait!

After I got home from the hospital, I took Gavin to our friend Laura's house for a playdate with her triplets, Lindsey, Maya, and Brandon:

They had fun sticking decals on the front storm door:

Time for a snack!

All the kids were a bit shy at first, but Gavin enjoyed playing with different toys. We can't wait to go back when Evie is better!