An Update On Me...By Gavin

Hi everyone, it's Gavin. Most of the news lately has been about Evie, so I decided it was time for some news about me. I have 8 front teeth and I am getting some big teeth in the back of my mouth. Mommy calls them "molars" and Evie is getting them too. We decided they only hurt us once in awhile.

I am ready to help Uncle David eat his granola bar, if he doesn't eat it fast!

I have been talking in twin-speak, but I don't think Mom understands it. I don't know what I'd do without Evie to babble with.

When Mom asks me to say "Ma-ma," then I say it for her.

Mom seems to need a lot of help with Evie's pulse-ox machine. It's always beeping! I help her with it every day:

Mom also never read the instruction book for Evie's nebulizer, so I am going to do it:

Evie brought this cool plastic container home from the hospital, and I tried to sit in it:

Hmm, maybe if I try this way....

Ok, I did it! It's kind of snug though. I think Daddy needs to get us some toddler chairs!

What else...I finally decided that I like spaghetti. I have not felt like taking my nap for about two weeks now, but I sure am tired. I am really glad that Evie is back home and she is feeling better! I hugged her about five times today! I can't wait for her to get rid of her tubes (sometimes I trip on them) and start running around with me!

Good News

Today Nurse Nancy came to check on Evie again. Good news: Evie lost 13 ounces over the weekend! Nancy said it was all fluid, and her weight right now is good (she had a net gain of one ounce). Evie's breathing is much easier and quieter, and she was crawling all around today. Nancy said Evie is "1000 times better" than she was on Friday.

Evie had fun playing with Cookie Monster, until Gavin decided to clean up some toys:

Evie also played a game with Auntie Di:

Then it was time for a snooze together:

When Evie woke up she so much energy that she felt like standing up (with her Auntie's assistance)!

The day is not complete here at the Cermak house until the twins tackle someone. It was nice that it wasn't me today, and I know Diana enjoyed it:

Ups And Downs

When Evie's home nurse came to see her Friday, we got some unbelievable news: she had gained 14 ounces in the three days since the nurse's previous visit! We were about to get all excited, but then Nancy (her nurse, who is awesome) told us that such a fast weight gain wasn't good; it meant she had "fluid overload." She advised us to decrease Evie's feedings from 20 ounces a day to 15 ounces, and also Evie is back on a third diuretic.

I had no idea that a rapid weight gain could be a bad thing; after all, all the nurses and doctors I have met with in the last month have continually harped on me about Evie getting more calories. Nancy also pointed out that Evie's lungs sounded "wet" and she was working harder to breathe. Evie's cardiac nurse (Julie) said she was worried about Evie having congestive heart failure and having to go back into the hospital.

That's the scary news. The good news is that yesterday (Saturday) Evie woke up and was breathing easier - her chest didn't sound raspy and rattle-y to me like before. Then today, Sunday, she is even better! Almost no coughing or spit-ups, and she is more playful and engaged than she has been since coming home from the hopspital three weeks ago. She has been dancing, scooting on her butt, waving out the window at squirrels and birds, throwing toys around, and brushing her hair:

I brought Cookie monster out again (he had been on hiatus for a few weeks) and the kids just loved him:

After Nurse Nancy left on Friday, I vacuumed the rugs. I had to use our upright Bissell because our Shark broke (after not too many uses, unfortunately). Evie was scared of the vacuum and climbed into Auntie Di's lap. Then Gavin had to do the same, so I got this cute picture of the three of them:

Francis and I ask for everyone's continued prayers for Evie to get better, and for her breathing to improve and her energy and appetite to increase!

A Calmer Day

It's Sharon blogging...I have been hit hard with a cough/cold/sore throat combo that has really worn me down, and I can't help but wonder if Evie and I have the same thing (or at least similar versions of the same bug). I was so glad that we had no doctor appointments today and we could just stay home! Today we managed to get 20 ounces of formula into her with minimal spit-ups, and tomorrow the home nurse will be here to weigh her. We are supposed to give her 25-26 ounces per day, which seems like quite a lot. We haven't gotten there yet because we are increasing her feedings very slowly to avoid barfs (and avoid Francis having to change her sheets 3 times a night).

Here are a couple photos from the other day. Gavin loves to help me check Evie's pulse-ox. He gets the little machine out of its bag and brings it to me. Evie, on the other hand, is tired of me wrapping the sensor around her toe 3 times a day, but she doesn't mind it after the first minute.



"Hey Mom, someome on the phone wants to know if we can switch our long distance carrier to AT&T!"

"Maybe it's just a cold?"

In the continuing quest to try and figure out why Evie is coughing up so much phloem, mucus and her formula, Evie saw one of the cardiologists from Hope Children's Hospital's Heart Institute (where she had her surgery). An x-ray and echo cardiogram showed that she did not have pneumonia or any other type of infection or other problems common with infants who are intubated for extended periods of time.

Unfortunately, the doctor could not conclusively state what might be causing all of her coughing and mucus. It's nice to know that she doesn't have these more serious illnesses, but we still don't know why, how long it will last, or what to do about it. With serious illnesses checked off the list, the best explanation we have so far is from her pediatrician and her home health care nurse, who both theorized it may just be a bad cold. This has been going on for almost 10 days now, but thankfully she has slept well the last two nights, at least. (I think I've typed "mucus" so many times in the last few days that this blog will probably be the #1 Google hit).

This past Sunday, Grandpa and Nana Cermak came over and spent a good long day with the twins. We had some beautiful weather over the weekend and Gavin got to take a nice stroller ride with Grandpa, but Evie was tied up to her feeding tube all day, she read lots of stories with Nana on the couch.



Gavin checks his iPod play list before hitting the road.



As mentioned yesterday, the twins are learning their body parts from the books the Florys gave us. Gavin learned a lot of them while Evie was in the hospital, and in the photo below shows Evie where his "ear" is.



Evie has found Daddy's ear!

Still on the Road to Recovery

Sorry about the lack of updates the last two days, but the women of the Cermak household are sick (Evie, of course, and Sharon lost her voice and has some sort of cold). I've had several very late nights with Evie the last three days, and we're all exhausted and running on fumes.

Evie is holding steady, and a lot of her personality is coming back now that she's off of the Ativan, but she is still coughing up a TON of mucus and spitting up a lot of the formula she gets via her NG tube. Despite being off the Ativan for about 4 days now, she still doesn't seem to have much of an appetite and takes little by mouth; maybe an ounce of formula or baby food from time to time.

She hasn't gained any weight for a week, and sometimes her coughing is so violent she breaks out in a sweat and has turned blue occasionally, prompting us to up her oxygen amount temporarily. We thought she was getting over all this coughing/mucus production last Thursday and Friday, but late Saturday night it came back with a vengeance and this past Sunday was very tough on her. She also hasn't been sleeping well because the coughing wakes her up and I've had to change her crib sheets and jams 2-3 times a night.

I took her to see a new pulmonary specialist on Monday who changed her nebulizer treatment, but I didn't think the doctor was very interested in her and didn't do a very good job examining her. Sharon took her to get a chest x-ray today and she will see one of the cardiologists from Hope Children's Hospital on Wednesday to try and figure out why she is producing so much mucus.

Below, Evie needs to gain so weight, so she's going to try Mom's snack bars.

Here's Gavin using his new reading perch. Perhaps it's time to buy some toddler chairs?

Gavin has really been into some books that Uncle Mark and Aunt Robin bought the twins a few months back that show lots of real-world objects, animals and people with the words.

Gavin got pretty good at the toy below where you have to use different motor skills to activate the pop-up. Here he is showing out his mad skillz to Evie. Evie's scars are healing well, her diaper rash is better every day and her skin is a lot less dry too. You can click on the picture for a larger size.

Before the surgery the twins loved to play in their high chairs together, and they fell right back into their old routines. Here's Gavin showing Evie some of the new things he learned to do while she was in the hospital, like... slamming his head back against his high chair (yes, we're so proud). It's kind of funny except when he does it against the cabinets!

Another Check Up

On Thursday, Evie had a follow-up visit with her regular cardiologist, Dr. Gulecyuz, at Edward Hospital. We were hoping to hear that Evie would be able to come off of some of the 12 medications she's currently taking, and also come down off her oxygen. She will be completely off her Ativan by Friday, so we are hopeful that her appetite will come back soon after.

Evie has been much more playful the last two days and we see more and more of her old personality trying to come through. Although weak, she has started crawling again just few feet at a time, and has even pulled herself up to a standing position once or twice. Slowly but surely! Sharon and I are also very grateful that she seems to be getting over her respiratory infection and the multiple spit-ups during the night have stopped. She slept 12 solid hours last night!

Here's Gavin giving Evie another of his now-famous blessings before her doctor visit.



Grandma Cordes went with Sharon and Evie to the doctor's office while Granpa Cordes hung out with Gavin at home. The girls got in a little hair styling time.



Isn't that how it always is at the doctor's office? You come in, get undressed, and then just sit there on the table half naked for a while, waiting. You can click on the picture below to get a better look at how Evie's scars are healing (all the docs say they're looking quite good!)




Dr. Gulecyuz thought that Evie was doing very well and she can come off of one of her diuretics and probably one of her blood pressure meds in a few days, and also her Bosentan. She's almost completely off of her oxygen. She came home 12 days ago at 1.5 liters, and now she's down to just a quarter liter. She has also been off the oxygen for up to 4 hours at a time with hardly any drop in her stats (except when she gets upset).

Dr. G. said that she should be coming out from the fog that she has been under from all these meds. We definitely see that from the way she has played with Gavin and her toys the past two days.



A little cuddling time with Grandpa Cordes after the doctor visit.

Gavin was very helpful with replacing the water cup in Evie's oxygen machine. He carried a half-gallon of water all the way across the kitchen!

Evie crawled all the way to under the kitchen table and tried to get some entertainment from all of the tubes taped to her face.

Swing Time

Last week when we took Evie for her first post-op exam, Grandma Cordes and Uncle David took advantage of one of the first true days of spring and took Gavin to a nearby park at our church, St. Thomas the Apostle.



Here is a photo of Gavin and Evie on another swing just a few days after their one-year birthday, back on October 14, 2008. Check out how small Gavin's legs look compared to the following picture below it!



Holy cow! Just six months go by and he's practically touching the ground!



Getting ready for the big push!

Gavin is really determined to master the swing!

Gavin says, "You want this swing? Come and take it -- if you can!"

Evie Avoids a Shot

Today we took Evie to the pediatrician's office for her RSV shot, but it turned out she had a low fever (100 F) so she couldn't get it. I know she was relieved! She hated just getting undressed in the exam room. The nurses and doctors there all wanted to see her (and her scar) and fuss over her, as they had not seen her since before her surgery.

Evie really gave Francis a run for his money last night. When he gave her the 10pm meds, she barfed 6 times in half an hour. He had to change her outfit and sheets and he did not get much sleep. I explained this to the doctor today, and she thought Evie was coming down with a cold. She has snots and is coughing up a ton of mucus. She was better for me today though - she even took a 2hour and 15 minute nap!

Giggling at Gavin:


Totally calm on Uncle David's lap:


Gavin in a new outfit:


More giggles - Uncle David taught the twins the word "blarney" and they thought it was pretty funny:

I put Evie in a green dress for her doctor's appointment. When we got home, she drank 1.5 ounces of formula from Grandma, which is the most she has taken by mouth for awhile. I put the rest of her feeding through her tube and she only had a couple tiny spit ups.

Beautiful Day

Grandma Cordes, Auntie Di, and Uncle David all visited today! Auntie Di took the early shift with Evie so that Gavin and I could go to exercise class, then she left for a job interview. We have our fingers crossed for you, Di!

Grandma and Evie read a story before Evie's nap. Evie took an hour-and forty-minute nap today, the best one she has taken all week!


All smiles for Uncle David:


The weather was so gorgeous that in the afternoon we all went for a stroller ride:


Gavin loves to look at the cars going by:

How lucky for us that Uncle David happened to schedule this week as a vacation week! He'll be helping out for a few more days this week.

A Busy and Fun Sunday!

Today Nana & Grandpa Cermak and Auntie Clare came over. They did their best to tire the twins out - Gavin took a great nap, but Evie put up a big fight (and a small barf) before finally falling asleep. Later in the day the kids got to go for a stroller ride with their grandparents and had a great time!

Evie is getting continuous feedings with a pump that we have at home. This way she can receive formula very slowly over a specific amount of time, which she is tolerating much better than gravity feedings (when we would hold her syringe with formula until it drained into her tummy). She is getting perkier every day!

The twins started the day by playing nicely together:


Lately, they are both really interested in combing their hair (or anyone else's, for that matter):



Evie and Grandpa:



Evie enjoyed more jewelry from Auntie Clare, just in time for St. Patty's Day!



Evie decided that she will be in charge of choosing a boyfriend for her Auntie on Match.com. "Hmm, skip this one, Auntie Sassy. Who's next? OK, that one has potential."

Evie and her Auntie:

We listened to oldies music all day! Here's Gavin dancing with Grandpa:


Gavin relaxes with his drink and his Nana: