Tuesday, August 31, 2010

An Aunt, Uncles, and Cats - Oh My!

Evie is feeling better, eating better, and getting her strength back. She isn't falling asleep in the kitchen anymore! Her cardiologist happens to be on vacation right now, so we'll have to wait to discuss her angiogram results with him.

On Sunday, Uncles David and Brad came over to visit, and we all piled into the minivan to head over to Auntie Di and Uncle Kevin's house. It had been months since the kids and cats had played together! Needless to say, they all had a great time. Evie fed Fergie a treat for the first time:

Uncle David gave out treats, too:

Gavin was super excited to play with the cats. He kept placing their toys near them (or on their backs) and they would give him this look like "What am I supposed to do with that?"

Evie found a box to sit in, and Uncle Brad was happy to push her around in it:

Everyone watched as Auntie Di helped Fergie show off:

Gavin shook Fergie's paw. He was just so excited to be there! He chased both cats at one point, and we had to remind him to be gentle and not stomp his feet, but overall he did pretty good for being an almost-three-year-old boy.

Evie and Gavin both liked these colorful chairs:

Even though there is another identical chair, Gavin had to sit in Evie's chair with her:

"Hey Fergie - you're in a box, too!"

Gavin shared the laser pointer with the cats (when he wasn't chasing it himself):

Back at home, Uncle Brad and Evie read a book together:

Gavin's vocabulary is still growing exponentially. Over the weekend he learned how to say, "Auntie," and "Unc," and just last night he figured out to to say, "Auntie Di," so of course we called her so she could hear it herself. He puts two-word-phrases together constantly, and occasionally three words. One of his favorite phrases is "fall down," and when he says it, he proceeds to fall down. He is also repeating everything we say!

Monday, August 30, 2010

Monday Cuteness

The first two days that Evie was home, she was still tired and didn't have her full appetite. She would sit on the floor or in her booster seat and her eyes would droop shut. I finally asked her if she wanted to take a rest on the floor, and she said yes:

Of course, then Gavin wanted to do the same thing:

Evie and Gavin both like to look at pictures of Francis during the day. They also know what button to push to advance to the next picture:

Just one word: "Ah-choo!"

Wednesday, August 25, 2010

Evie Update - Day 4 - She's Home!

Evie got to come home today!!!! Woo-hoo! She is sleeping in her own bed now as I type. She has a slight, thick cough from being intubated, but otherwise is doing fairly well. She was eating a sausage patty with Francis when I arrived this morning:

All that eating made her tired - after all, it was her first solid food since Sunday evening - so she zonked out for a nap:

We got the OK to leave in the early afternoon. We got Evie all dressed and ready to go. We were about to put her in the little red wagon to go downstairs when she threw up all her clean outfit. Sigh! In the picture below she is wearing a way-too-big, but clean, donated shirt that our nurse found for her. We were just waiting for Francis to pull the minivan around to the front.

The kids at Hope are brought to the front door in these red wagons when they get discharged. It's similar to how adults get brought out in wheelchairs - the hospital doesn't want any liability if the patients fall on the way out! Or in our case, if a parent fell while carrying their child.

Evie fell asleep on the way home. I gave her a much-needed bath, she ate a little bit of ham, and then wanted to go to sleep. We are looking forward to a quiet day tomorrow, and not going back to the hospital for a very long time! Again, we are so very grateful for all the prayers, well-wishes, and help we have received this week.

Tuesday, August 24, 2010

Evie Update - Day 3

Evie had a good day today! She was kept sedated all night with Fentanyl and Versed (intravenously). Around noon, the nurse turned off those meds and allowed her to wake up enough to remove the breathing tube (had to make sure Evie didn't drift back to sleep and forget to breathe)!

True to form, Evie indicated that she was thirsty and let us know just how mad she was that she couldn't have a big gulp of water as soon as that tube came out of her throat. She had to wait, because she had a tiny bit of clear stomach-bile-vomit and the doctor didn't want her to vomit any more, so he instructed us to wait about 2 hours before giving her a big drink.

She was very pleased to be able to sit up, though! All the better to watch her DVDs. Of course, I fixed her pigtails. Surprisingly, she didn't want both of them in, so I just did one on the top:

We asked if Evie could at least moisten her mouth with one of these little sponges-on-a-stick. The doctor agreed and Evie became a happy little girl.

"Ahhh, that's better - my mouth was sooo dry!"

Evie is still shaking off the effects of the sedatives at this point, so if she looks a little glassy-eyed, that's why!

Below is a video of her dipping her sponge in water. She was determined to do it herself:

So she is off the ventilator and the nasogastric tube, and her Foley catheter was removed today. Despite the not-so-great results of her procedure, she is doing very well now and coping pretty well, too! She is old enough to understand that it's not all bad being in the hospital - she can watch movies all day and eat in her bed! And as long as she breathes and eats well, she should be able to come home tomorrow!

I also want to clarify something: yesterday we mentioned that she had a "mini-arrest" during her angiogram procedure. This happened because (according to the cath doctor) the "catheter was stretched across two valves and her body didn't like that." Her blood pressure dropped, and so did her heart rate, but her heart never, never actually stopped. It is one of the risks of doing this procedure, and luckily Evie was surrounded by nurses and doctors who have done many angiograms and were prepared for anything.

Monday, August 23, 2010

Back in the Hospital - Evie's Cardiac Cath Days 1 & 2

Hi everyone, it's Francis blogging for a change. Even though Evie just spent the last two weeks of July in the hospital, we had to re-admit her Sunday afternoon for a cardiac catheterization (aka, cardiac cath or heart cath) to measure the blood flow in her lungs and the blood pressure.

Her doctors were also concerned that the two gortex shunts she had implanted when she was about 4 months old might be too small now and would have to be replaced.

We had to admit her the day before because she needed to receive two doses of a drug called Mucomyst, which helps her kidneys process the contrast dye that is injected into her system during the cardiac cath.

We didn't receive a lot of good news following the cath, and Evie also had a mini-arrest episode, which was quite scary. I'll get to all that, but first, here are some photos from Sunday evening in the hospital with Evie, and Nana and Grandpa Cermak. I'm sorry for the poor photo quality, but I had forgotten my camera during the flurry of activity to get to the hospital, so we took these with Grandpa's cell phone.

Here's Evie in her bed before any IV lines or other sensors are hooked up. She was happy munching away on a bag of Cheetos, courtesy of Nana Cermak's co-worker Jerry (who also gave Evie the Mickey Mouse stacking toy in the picture... which she loved!).

Here's Evie in her hospital gown (that was a medium and was HUGE on her), but she loved it and wouldn't let us take it off. She also had an absolute ball with this stacking toy. Honestly, I thought she was too old for it, but I couldn't have been more wrong. She would multi-task: eating Cheetos with one hand while stacking with the other, and she liked wearing the rings as bracelets.

Evie and Grandpa Cermak (who is sporting his Official DuPage County State's Attorney's Office jacket):

Evie liked how soft the jacket was. You can see the IV line in her ankle here.

Here's Evie with Nana Cermak after Grandpa went home (Nana stayed the night with me in Evie's room). It's nearly 11:00PM at this point and Evie was wiped out after the nurses had to draw blood from her a second time because the first batch hemolyzed. It wouldn't be the last time either, they had to draw again at 5AM. It was rough for her to have to go through that 3 times. She did not like having to get stuck by needles that much and she let the whole floor know it.

Evie was taken back for the cath at 7:30AM and the procedure was over around 11:30AM. They had to enter through her liver, because all of her good femoral arteries are occluded, i.e., obstructed. The doctor performing the procedure, Dr. Javoi, has done all of Evie's prior caths, and overall, Dr. Javoi thought that Evie was "more fragile" and that her body did not take very well to the cath procedure. Evie isn't that big (only 18 lbs), but as her body gets bigger, it will be harder for her heart and lungs to keep up.

He told us that Evie had a "mini-arrest" episode where her blood pressure and heart rate rapidly dropped when the cath tube had passed through two of her heart valves, and they had to perform CPR and chest compressions for about a minute until she recovered.

The lone bit of good news was that her shunts do not have to be immediately replaced. The major bad news was that the Rastelli conduit that was attached to her heart last February (which was her open heart procedure, and which required a 31 day hospital stay), is failing. The conduit (which is not gortex, but is a tube from a cow) is being rejected by her body and is leaking, allowing blood to flow backwards into her heart. I don't' know what the corrective options for this are yet, but her case will be discussed by the surgical team during their weekly Thursday meetings.

There was otherwise no major change in her lungs. Out of the five major lobes that make up your lungs, only Evie's lower right lobe is really working (performing the blood-oxygen exchange) and doing all of the work for her whole body. There is a little function in her lower left lobe, but it is very minor.

Evie is in the Pediatric ICU at Hope (in fact, it's the same room she was in in July!) and will be kept sedated for the rest of the day (Monday) and all night. She currently has a breathing tube down her throat while she's sedated and the docs are monitoring her stats and to make sure there is no bleeding from her liver due to the cath.

They will wake her up on Tuesday morning if all goes well. She will most likely be discharged later in the week. Please keep little Evie in your thoughts and prayers!

Sunday, August 22, 2010

Evie Update - Day 1

As I mentioned Friday, Evie is scheduled to have an angiogram tomorrow at 7:30am. Her doctors decided to admit her today to give her a pre-treatment medication to help protect her kidneys from the dye used in the procedure. It is just a precaution - her nephrologist told me he would rather be proactive then reactive.

Right now we are waiting for a phone call from the "bed board." Yes, that is what it's called - the group who monitors which child is in which bed on which floor of the hospital. When they have a bed available, they will call us and Francis will take Evie over to Hope while I stay here with Gavin.

Here are some pictures from last weekend, when we got to see both Uncle David and Uncle Brad. We went to a new (for us) park that we discovered while we were exploring one day. It's shady and the kids love it!

The kids and uncles in our minivan:

Evie held Uncle Brad's hand:

This park has a neat teeter-totter that doesn't required two kids in order to work:

***Update 3:40pm - We got the phone call that a bed is ready, so Francis and Evie are headed over to Hope right now. We will post updates tomorrow.

Friday, August 20, 2010

Health Updates

Gavin is sick with a sore throat. It started with a fever Wednesday that went up and down but didn't go away, so I took him to the pediatrician yesterday afternoon. I was thankful it was not another ear infection! Gavin has an antibiotic, which we filled last night after his fever went up to 103.3. He is very tired, listless, and just wants to be held 24/7.

Evie is scheduled to have a diagnostic angiogram (cardiac catheterization) on Monday. The good news is she will be the first case of the day. The bad news is that we'll have to take her for bloodwork sometime this weekend, at Hope/Christ Hospital. Also, the cath doctor will have to access her heart through a vein in her liver, which means she will have to stay overnight because there is a slight risk of bleeding into the abdominal cavity. Evie had this done during her last cath, in May 2009, and she was fine. She did stay for three days though, so we hope this time will be only one or two days! The results of this cath will help determine what the next steps will be.

{ Update, 9:00am: When we went to get Evie this morning, she'd had a massive diaper blowout in her bed. Then Gavin threw up all over our couch. Luckily he had only had water to drink. Looks like this will be a day we just stay home and watch Disney DVDs!}

I have a few cute pictures from last week - here are Daddy and the twins reading early in the morning:

Gavin fixing my hair:

Getting ready to go out:

Gavin and I read a story at bedtime:

Evie and Nana Cermak:

Wednesday, August 18, 2010

A New Fan

Gavin is saying about a hundred words now - I know because I have been writing them down. Now that he reached 100, I will stop - he says so many new ones each day that it gets hard to remmeber them all! He also has started saying three-word-sentences: I bumped my knee getting out of the car, and he said "Mommy car owie." I have been waiting for this, and now that it's happening it is so exciting!

Here is Gavin helping Francis to put a new fan together. He pointed to it and said "new":

"What can I do to help, Daddy?"

"OK, Dad, I'll hand you the screws."

Evie and Uncle David stayed out of the fan assembly project and decided to take a rest instead:

Monday, August 16, 2010

Super Cuteness

Even though Evie and Gavin don't always agree on activities, they have a deep and undeniable bond. It's not so much a language of their own as it is an inherent understanding of how the other one is feeling at a given moment. I don't think I, or anyone else who is not a twin (or triplet) will ever understand it completely. When they "play nice" and interact constructively, it is the sweetest thing I have ever seen.

They were sitting next to each other as I got them ready to go out one morning last week. Evie was patting Gavin and then wanted to hold his hand:


Also in these pictures, Evie is wearing new bows in her hair. They were made for her by my neighbor Michelle, who has her own business: Lovely Lulu Hairbows. Check it out if you know any little girls! Evie at first didn't want bows, but as soon as she saw them (and realized that she would not have to give up her pigtails) she loved them. She asks me to put them in even if her current outfit doesn't match the bows. I will just have to get more bows to match all her clothing!

Thursday, August 12, 2010

Visiting the Florys

On Sunday we drove up to Gurnee to visit our good friends Mark and Robin and their kids Annie and Sam. Evie warmed up to Uncle Mark right away, espcially after he played the piano for her. (She is making her "I'm not looking at you face" at me, not at Mark!)

Then Uncle Mark showed her the fish, and then she got to pet one of the cats...she was thrilled!

"Where did the cat go? I thought he was right here!"

Gavin had a great time playing with Annie. He started saying her name right away: "Ah-nee!" He followed her everywhere, except into the basement.

Evie and Francis:

Robin and Sam:

Aunt Robin read to Evie as she ate her chicken nuggets:

Mark, Francis, and Annie spent a lot of time in the basement, playing a karaoke game on Xbox:

Here's Francis and Annie singing to Taylor Swift, and all the other kids are watching (Evie is on the couch behind Francis):

As Robin said, we wish the road between our houses wasn't so long! We hope to get together again soon!

On another note, Evie saw her nephrologist (kidney specialist) on Monday. Uncle David had come over to watch Gavin so Francis and I coud both go with Evie, but once Evie was in her uncle's lap, she didn't want to let go! When I told her it was time to go and picked her up, she started to cry. She only stopped when we decided to have David go with me and Evie, and have Francis stay home with Gavin.

The doctor thought she looked good and he was pleased with her bloodwork results from last week. Evie will see her cardiologist next week, and have a diagnostic angiogram on August 23. Whatever the angiogram shows will help us determine the next step for Evie.