Pajama Games

Evie has gained 5 ounces since Monday. Yesterday, we decided to remove her feeding tube because we feel so strongly that she will do better without it. And today she took more food by mouth and coughed less than she has in days.

Today we had a visit with Evie's cardiologist, Dr. Gulecyuz, which went very well. Evie was in a great mood and barely cried, even when she had an EKG. The receptionist gave her a stuffed bunny (we are well known in that office by now) and she was kissing it while we were in the exam room.

The twins have some cute new light-weight sleepers from Grandma Cordes, and I couldn't resist taking pictures! Here, Gavin wanted to hold Evie's arm before bed time (counting the ladybugs, maybe):

"Can we stay up a little bit longer, Mom?"

"So Evie, you put the blocks in here, and then it plays a song!"

"Future Rock Star" (and heartbreaker)!

Old School Silliness

Last Sunday, Uncle David came over for some silliness with the twins. Here they are looking out at the rain:



When Gavin was napping, Evie got in some quality floor time with her uncle:

Then it was time for some head-butting:

"I got your nose, Uncle David!"

Then it was time to dance. Uncle David had downloaded one of our favorite albums from high school onto his iPhone (geez, what can't that thing do?) and we played it for the twins. Everyone get ready for some old-school 80's music from Siouxsie & the Banshees!

Tough Morning for Gavin

Today we took Gavin to Edward Hospital for his VCUG test, but he didn't end up doing it. It was a very tough morning, because first we had to wait an hour past the time we were scheduled. The good news for Gavin was that he got to eat a McDonald's hash brown and have some of Daddy's orange juice on the way there.

While we were waiting, Gavin thought the coolest thing in the world was getting into the lockers in the radiology deopartment:

After the lockers, he moved on to the dressing rooms:

But the worst part of the day was when the nurses tried to insert his catheter. He had no sedation or painkillers, so he was beyond upset. He struggled so much that they couldn't get the catheter in, and he was completely traumatized, so Francis and I decided to just stop the procedure. We'll reschedule another time, with sedation.

"I'm going to go ahead and cancel my test today, Dad."

Evie has an appointment with a pediatric gastro-intestinal specialist tomorrow morning. We hope he can shed some light on why she keeps barfing, and also discuss when her malrotation surgery will be.

Windy Day Fun

Evie update: she is back to 16 pounds, 8 ounces. This is what she weighed a week ago, so she gained back whatever she had lost during all the big spit-up days. Her lungs are clear but she still coughs frequently. She continues to take more and more formula by mouth during the day.

Gavin update: Tomorrow (Tuesday) Francis and I are taking him to Edward for a VCUG test. This is the test he had when he was 3 months old, to diagnose his vesicoureteral reflux. In November he had the deflux procedure to correct it, but the only way to know for sure if the deflux worked is to repeat the VCUG. I've added links to refresh your memories of all this; but the procedure should be quick and requires no sedation. In a nutshell, a contrast dye will be put in his bladder and we then wait for him to pee, and we'll watch a "real-time" x-ray to see if the urine flows back up to the kidneys or not. (It shouldn't!)

This past Saturday it was a bit rainy and windy, but nice enough to step outside for a little while with Nana and Grandpa Cermak. The twins loved exploring the great outdoors and especially liked looking at trees:





Gavin LOVED Grandpa's shiny red convertible! "Hey Grandpa, can you toss me the keys? I want to take it out for a spin!"

Evie did not want to be left out of a car ride. "Take me with you, Gavin!"

Gavin was very interested in the rocks and bushes:

Gavin liked sorting the rocks:

All that activity tuckered everyone out. Nana read with Gavin following his afternoon meal, and Evie just zonked out on the floor and snuggled with Grandpa.

If you look closely (or click on the photo for an enlargement), you can see that Evie's still holding the rocks in her hand that she had picked up outside! She loved tapping them together.

No Energy for Evie

So last week Evie had many, many spit-ups. We don't think she kept much of her food down at all. We followed the pediatrician's advice to give her 5cc of Pedialyte every 10 minutes, and by Friday at noon she was starving! She took several ounces of formula after that and kept most of it down. She has improved throughout the weekend, and tomorrow her nurse will be here to check on her.

She is so worn out from vomiting and not having a lot of calories in her, that she just wanted to lay down for most of the last few days (I tried to put her on a blanket but she kept rolling to different places on the floor):


Gavin sends a text:



Evie gets a sponge bath:

Old School Sesame Street

It's Francis blogging today. Not much of an update today as the whole household is sick to one degree or another. The twins both have runny noses and Gavin has been extra whiny, and Sharon and I seem to have sore throats and fatigue. The week started off cold and blustery, but ended on a high note! We hope the sunshine continues because the kids are getting cabin fever.

Evie had just a little bit of blood in her spit-ups today; enough that Sharon took her to see the pediatrician in the afternoon. We're trying a different formula feeding technique to try and improve the amount of formula she keeps down by giving her 5 cc's every 10 minutes. Evie was quite restless last night and didn't sleep well, and subsequently she was quite listless today. We've been trying to introduce some new toys every other day or so to keep her interests up. Some more pictures of that next week!

Here is Gavin in one of his favorite sleeping positions that Sharon caught him in at the end of a nap (along with his new favorite stuffed toy, Cookie Monster. That's right, my boy kicks it old-school Sesame Street. None of that helium-voiced Elmo stuff for him.

As Sharon has mentioned before, Evie loves to watch all of the wildlife in our backyard and I put out some peanuts every morning to keep the shows running around the clock. We recently added a pair of married ducks to the review and who stop by every day around 4pm. Evie loves to watch them and can even point out the Mallards in one of her animal books!

Legendary Cuteness

Evie update: she has a cough and cold (Gavin has a runny nose too) but her lungs sounded clear to her nurse. She lost one ounce since Monday because she keeps barfing...the cough just makes her spit up more. We will just keep feeding her and hope more of it stays down.

Yesterday Gavin gave Evie a hug....



...and a kiss!!!!

They are the best of buddies! Have I mentioned how much I love having twins?! I'll admit that by 6 pm I am beat, but I can't wait to hug them again in the morning!

Sunday Fun

Evie update: she had many, many small spit-ups throughout the day today - Grandma Cordes caught most of them! (I put her on "barf duty.") I called our home health nurse and asked her to come tomorrow instead of Thursday to check on Evie. Evie had no fever and her pulse-ox was normal.

Nana and Grandpa Cermak visited on Sunday. Here's Nana reading to Evie:



Evie managed to get herself into a very comfortable position for a nap with Nana:


Both kids wanted to sit in chairs and hear stories:



Gavin and one of his favorites, Ten Little Ladybugs:

Saturday Fun

Evie update: she gained five ounces since last Friday, and her lungs are clear. We will increase her nighttime tube feeding by one ounce, and her nurse will be back Thursday. We had to change out her NG tube and retape a new oxygen canula on Sunday. Evie was not pleased to have that tube put back in!

This past Saturday we got to spend some time with Uncle David. We had fun checking out his new iPhone...if there is anything that David doesn't yet understand about his phone, I'm sure Gavin will explain it to him!



Then Uncle David and Evie got to spend some time together out on the back stoop:


Just sittin' on the stoop with her oxygen tank... (mismatched socks courtesy of her Uncle!)


Later, Gavin got to come outside too:

"Hey, Evie, it's pretty nice out here! I chased all the bugs away, and all the birds and squirrels, too!"

Lean On Me

Here's our Evie, dressed up to talk to a reporter...want to know more? You'll have to wait a few more weeks!!

Evie has taken to leaning her head on visitors when she is tired. Sometimes she doesn't want to be held; rather, she wants to sit on the floor, but she is ready for a snooze! Here she is leaning on some of the men in her life...

Uncle David:



Grandpa Cermak:


Daddy:

She tries to lean her head on Gavin when he hugs her, but that only lasts a split second and then he is taking off in another direction!

A Most Excellent Day

Today was a great day for the Legendary Twins. Evie had a visit with her cardiologist first thing in the morning, and she behaved like a perfect angel the whole time (usually she cries when Dr. Gulecyuz listens to her heart). Dr. G. thought she looked great and we are going to start weaning some of her meds. He said as long as her pulse-ox stats are good, we can slowly wean her oxygen as well. (Her pulse-ox today was 85, by the way - excellent!)

Auntie Di watched Gavin while Evie and I were gone, and he was very happy when we got back home (he gets upset when Evie or I leave without him - it just doesn't make sense in his little world). After naps, we all took a long walk in the beautiful spring weather. Then it was time to give Evie a sponge bath.

I have been giving her sponge baths for a couple weeks now, because for some reason she now hates baths. It started after she came home from the hospital. We all feel so bad because she used to LOVE baths and loved to splash around in the tub. I started the sponge baths when she got so upset during a tub bath that she actually threw up in the tub.

So today, she actually giggled while I was washing her hair. Luckily, Auntie Di is always quick with our camera and she captured the moment (you can see a few of Evie's many medicine bottles in the background).

Here is Gavin checking out the early morning wildlife on our back patio. The twins love to watch the birds, squirrels, chipmunks and rabbits in the mornings:

Here is a video that reminds us of "the old Evie;" we love to see her playing games with Gavin:

And, to top it off, Evie felt like "driving" he car today for the first time since her surgery! These are the "walk-n-ride" cars that the twins love to push around the house together. Gavin likes to go first, but he waits for Evie to catch up to him. When she decided to start pushing today, he was so excited and had this look on his face like, "finally we can do this again!" It was awesome to see. Actually it was probably pretty funny to see, because I was following Evie, pushing her IV pole with her feeding pump and carrying her portable oxygen tank! Evie went around our house one a half times before she decided to sit down and rest.

Cruisin' Around

Happy Birthday Nana Cermak! Our friend Katy and her daughter Paige were able to surprise Nana at work today with some lovely flowers to celebrate. Check out Katy's blog for some pics!



Evie's weight gain since Monday was 7 ounces. Tomorrow we'll see her cardiologist and hopefully we can drop a few more of her meds and start weaning her oxygen. She is more active than ever, though! She keeps on pulling herself up and cruising around the furniture.

Here she is saying "hi" to her squirrel buddy:



What could be better than licking a glass window?



Only holding on with one hand:







Auntie Di got Gavin up from his nap -he still looks a little sleepy!



Here are the twins, sitting in each others' new toddler chairs:

Here's Evie cruising by the pack-n-play: