A Better Day

Evie had a better day today than yesterday, and she should be able to come home tomorrow!!!! The doctors today decreased her oxygen flow rather quickly, and as it turned out she was not able to tolerate it without her pulse-ox dropping into the 50's. So they went back up on the O2, and then decreased it gradually throughout the day. Right now she is at 2 liters (at home she has been on one liter), and they will probably keep her at that overnight.

She was kind of sleepy when I got there, but perked up when I walked in.




Her nurse asked me if Evie is a "twister" in her sleep! She certainly is, and here she is taking a nap sideways:




She even fell asleep with her tongue sticking out:



A little later, awake and hungry. She had not had any food by mouth yet, so she gulped Pedialyte and then threw up some of it. Then she gulped formula and threw up some of that.

After the formula barf, we gave her a bath and washed her hair. Her nurse made a silly shape with her hair...hmmm, that sounds familiar!

All combed and wrapped up!

Evie fell asleep after all that activity (and I did too)!

She woke up when she had to get another ultrasound of her belly (which she hated). Then she squirmed into another sideways position:

When I met Evie's nurse today, I thought she looked familiar. Eventually we figured out that since she used to work on the transport team, she was part of the group that picked Evie up at Edward's NICU and brought her to Hope when Evie was just 10 days old! What a small world! Here is her nurse, Casey, attaching some leads while I held Evie (10-18-07)!

(If you want to look back at that day's blog entry, click here.)

So overall, the trend with Evie seems to be "gradual is best." She did better with a gradual decrease of oxygen and sedatives. And when we gave her small amounts of Pedialyte every 15 minutes, she kept it all down. Francis will stay with her tonight and I will go back in the morning, and hopefully she will come home!

Breathing Tube Removed

(OK, the tube is still in place in this photo.) The nurses gave her a little stuffed whale that is by her head.

After having an ultrasound and echocardiogram this morning, Evie was doing well and had no problems. Her paralytic drug was stopped around 1pm, then her Fentanyl (sedation) was stopped around 2:30. Unfortunately, when she stopped getting the sedation, her pulse-ox dipped into the 50's. This is not what you want when you are trying to get a baby off of a ventilator!

The doctors then restarted her sedation at a lower dose and then gradually weaned her, instead of just shutting it off completely. Between 6 and 7pm, her breathing tube was removed!! She is doing fairly well: her nurse described her breathing as "a little coarse" and she is on a high-flow oxygen cannula. She is sleeping now as I type. We are not sure what day she will be able to come home.

Not The Day We Had Planned

Evie had to be admitted to the hospital today, because of the way in which her angiogram was done. Usually, the doctor threads the catheter through one of the large veins in her thighs to get up to her heart and lungs. But after all of the procedures she has been through, those veins are so full of scar tissue that they are not usable. So the doctor had to go through her liver.

We did not know this was even possible! But the liver has a lot of blood coming and going through it, since it is a filter for the body. So her doctor was able to use one of the veins exiting the liver and get to her heart. Unfortunately, doing it this way requires an overnight stay for observation, because there is a small risk of bleeding into the belly. And it is important that she lay very still to minimize the chance of bleeding.

Evie, laying still? Of course she was not interested in this. She started waking up and wanting to sit up, so the doctors gave her a drug to temporarily paralyze her. (We know this sounds scary, but it is only for the night.) Because of this, she had to keep her breathing tube in and also get a bladder catheter.

She did well during the procedure itself, although the doctor didn't find much to be thrilled about. Her left lung is not getting a lot of blood, and only half of her right lung is getting a good blood supply. So this portion is doing most of the work for her body. Also there are areas of high pressure (pulmonary hypertension) as well as some areas of normal pressure.

She also has something called a hemangioma in her left lung. The doctor said it "looks like a can of worms" but said it is basically a cluster of abnormal vessels that aren't doing a whole lot of anything. You can read more about it here. (Evie's nurse told me that these usually occur on the skin.)

Here is Evie playing while we were still inthe waiting room:


Here she is in ICU:

In the morning, the doctors will check her belly and heart, and if there is no bleeding they should be able to extubate her. She should be able to come home tomorrow, barring any other problems. Please keep the prayers coming...it was unbelievably difficult to see her laying in a hospital bed with a tube down her throat, AGAIN, and to not be able to bring her home.

Swinging and Reading

Evie has gained several ounces since her last weight check, and she continues to be very active. Francis and I just knew that we needed to pull her feeding tube and then her throat could heal and she would start eating better. She is babbling more, too. Wish us luck and send some prayers Tuesday morning for her angiogram (her 5th one)!

Last Saturday we took a walk to a park in our neighborhood. It was cool, but the kids loved the swings, as usual!

Gavin found 2 matchbox cars abandoned on the slide, and he held onto them for about 2 hours! Francis picked up a couple more at the store later on so Evie could play with them too.

When the twins got tired of their story, they just rolled one of the cars back and forth on the pages:

Almost bedtime for Gavin! "Hmm, this is more interesting than Goodnight Moon, Mom."

Angiogram Rescheduled

We got a stroke of good luck, and Evie's angiogram was re-scheduled for Tuesday, when she will be the FIRST baby of the day! This means no waiting around for me and her, and this day also works out better for Francis and Auntie Di (who will watch Gavin for us).

Evie continues to walk (assisted), cruise and crawl all around. Here she is pushing her car with Gavin:

Gavin now weighs 26 pounds 4 ounces! He loves to hold all three Cookie Monster dolls:

Bedhead and Power Tools

Evie update: we went to her cardiologist today, and while she is doing well overall (her heart got a bit smaller, and she gained an ounce since they weighed her last week), he wants her to have an angiogram next week. We are scheduled for Monday and she will be the second baby of the day. Her doctor is concerned about possible pulmonary hypertension, and also possible narrowing or thickening of the vessels around her heart and lungs. An angiogram will provide much needed information on Evie's heart!

Francis has been teaching Gavin how to "change the batteries" in their toys using his toy screwdriver. Gavin knows to hold it up to the screws and twist it. Here they are changing batteries for real:


Don't all boys love power tools?!


The kids both woke up from naps with bed-head:



"I don't have enough hair yet to have bedhead, Mom!"

Halfway combed - that's a little better! (And I was glad to get a picture of Evie's awesome smile!)

New Sidewalks

Evie was even more active today than she was yesterday. She pulled herself on furniture a few times, and twice I got her to take two small steps toward me! We will see her cardiologist tomorrow for a check-up and echocardiogram.

Last Friday we had a flurry of activity on our street - the city replaced a lot of sidewalk panels that were flaking. Needless to say, Evie and Gavin were thrilled to watch all the workers and their trucks. I held Evie, and Gavin was a good little boy and held Grandma's hand the whole time (we thought he might make a break for the fresh concrete)!








Later that day I had to go to the dentist (a crown and a filling, ugh) so Auntie Di came over to help Grandma. Of course, Gavin had to put on her shoes and walk around:



When it was time for Di to go, Gavin tried sitting in her truck. He wasn't too keen on it - I think he prefers convertibles!



After all the workers left our street, we took a walk up and down our street with Grandma.

Playdate!

Evie update: she has taken more of an interest solid foods. She loves a new Breyers yogurt I got for her, and she also loves Gavin's popcorn chicken. Today she wanted to hold onto my hands as she walked all around the house. Several times she tried her best to stand up by herself in the middle of the room, but couldn't quite do it. Maybe tomorrow!

We had a fun playdate today with our twin buddies, Pierre and Felix. They have a lot of neat toys in their yard. Here are Evie, Gavin, and Felix:


Gavin and Evie loved the slide:


Evie and Pierre:



Gavin and Pierre loved the stairs...

Then Felix joined in (Evie wasn't interested):

For more pictures from today, you can check out Pierre and Felix's blog - click here. We'll get together again soon!

Adventures with Cats

This afternoon we went over to Auntie Di's house to visit her and for the twins to meet more of their "cat cousins." Evie and Gavin met Uncle David and Uncle Brad's cats last summer, but they had not met Diana and Kevin's cats, sisters Fern and Fergie.

The kids were really excited to be in a room with two cats. Fern was shy, but she bravely stayed in the room the whole time (although she was not up for photo ops). Evie and Gavin shrieked with glee when the cats would chase a toy. I think they thought the cats were like big stuffed animals - Gavin even gave Fergie a hug!

An empty Diet Coke box is a favorite cat toy - Evie pets Fergie through the box top:

Peeking around the stairs:

Gavin offers a toy:

Evie was interested in the scratching thingy - Fergie came over to see what this little person was doing with her stuff:

Evie enjoyed standing up and looking out the window:

"Hmm, what mischief can I get into over here at Auntie's house?"

"Hey Fergie, what do you guys do for mischief around here?"

Mother's Day

Remember a few weeks ago, I mentioned that Evie was dressed up to speak with a reporter? Well, today a story about us ran in the Naperville Sun! The reporter was very nice and came to our house to learn about our family and about Evie's health journey. You can check it out by clicking here.

Today was a beautiful day. We started by opening cards - the twins love cards now. Evie likes the envelopes and Gavin likes the actual card. I have to get them out of his grasp before he destroys them!




Then we headed over to a park near our church. The kids loved the swings, as usual!

"I'm not giving up my swing!"

The kids were fascinated by this tunnel:

Evie liked it so much, she even pulled herself up and stood for a minute. She did a lot of "assisted walking" at the park, holding onto Francis. She even walked in the sand!

The kids both took long naps of about 2 hours and 45 minutes (and did not give me a hard time going to bed)! We took a long walk in the afternoon and then played outside for awhile. Evie crawled all over our driveway - I didn't even care how dirty she got. It was great to see her so active. Today was a wonderful day. Happy Mother's Day to Nana Cermak, Grandma Cordes, and all our mommy friends out there!