Evie Post-Op Update #4

It's Sharon...check out the pictures from today - NO MORE TUBES!! Today Evie was taken off the oxygen because she was doing so well on her own. Her oxygen saturations levels were in the 80's while I was there. She is also taking a bottle well, so the feeding tube was removed. She does still have 2 IV's but they are not hooked up to anything anymore. The nurses just keep the needles in, in case they need them again. It is REALLY hard to put an IV into a baby, so once they get it in, they leave it.

Her cheeks look blotchy in these pictures because of all the tape that she had on her face. The red light on her hand (ET phone home!) is a monitor for her oxygen saturation. Sometimes they put it on her feet - it's just like a little band-aid.

The only problem now is that she is super cranky because she is so over-tired. She is a busybody and wants to look at everything and doesn't want to sleep, and Francis and I are not there to be strict with naps and bedtime. She usually sleeps through the night (12 hours) and last night she only took a 2 hour nap and a 3 hour nap. And all the doctors and nurses are wondering why she is so fussy and inconsolable! I can't wait to get her home and back into her routine.

Evie Post-Op Update #3

It's Sharon here... I had a good visit with Evie today. She looks more like herself since being on Tylenol and a mild "drowsy" medication, as opposed to the more powerful stuff. One of her 3 IV lines was removed and she does not have to wear the blood pressure cuff all the time, so each day now there are fewer things attached to her. She was also able to take a bottle today, and her oxygen flow has been reduced to one liter at 25%.

I was able to hold her again and got her to take a 2 hour nap. She needs a TON of sleep on a regular basis and especially now. But the staff has to check on her at certain intervals, so she wakes up more often. Francis and I will have to re-establish her sleeping schedule when she comes home ["Can't wait!" - Francis].

I have to say that the pediatric cardio nurses have been some of the best ones that have cared for Evie in her 4 1/2 months of life. We are hoping she can stay in this section of the hospital until she gets discharged. One of the doctors told me today that she is no longer receiving any treatments that would be called "intensive care," but she is still in the ICU section because there are no beds available in the regular pediatric section.

The nurses have been playing CD's for her and set up a pink crib mobile and a swing. They only have 1 or 2 patients per shift so they have lots of time to check on her. They really fuss over her and she adores them and watches them walk around her room. She hasn't smiled yet for them, but I am sure that's coming soon!






Evie is quite content after drooling on my shirt.




Getting so sleepy! Look at those heavy eyes and that big yawn in this short video!



Aaaaaaand... fast asleep. :)

Evie Post-Op Update #2

It's Sharon again... Yesterday I visited Evie and the good news is that her chest tube was removed, as well as the catheter for her bladder. The BEST news was that I got to hold her finally, since the chest tube was out. She was her usual self - fussing because she was hungry.

More good news is that she is being given formula through the tube in her nose (NG -nasogastric tube) and the nurses have increased the amount she is getting to about half an ounce per hour. This will help her tummy feel full - which it didn't when she was only on IV fluids. So in turn she will be less fussy!

She will still be in intensive care for a few more days, and then she will move to the regular pediatric floor for a few more days. So it looks like she will be home some time next week. The doctors are taking things very slowly with her, since her breathing is slowly getting better.

Part of the reason why she was working so hard to breathe was that both lungs SLIGHTLY collapsed during the surgery. Her nurse told me that it is not uncommon for that to happen, as well as developing fluid in the lungs (which she also had). Both issues are getting better on their own and she will not have to have additional procedures to correct them.

The staff is now weaning her down on the oxygen, as well as the strong sedatives (Versed) and narcotic painkillers (Fentanyl). Last night they gave her Tylenol and a milder sedative and checking how well she does on these. She is still on the stronger meds in these pictures though.

Evie Post-Op Update #1

It's Sharon blogging... today David, Clare and I visited Evie. It has been two days since her surgery and Evie is still in the intensive care unit. All things considered, she is doing really well! Every nurse and doctor tells me the same thing: "She is REALLY strong!" They are surprised at her strength, but Francis and I are not. Since the day she was born, she has been feisty. She fights everything she doesn't like (naps, diaper changes, tubes coming out of her little body, etc.).

The first night she was in the PICU (pediatric ICU) her nurse had to place soft wrist restraints on her, because she was always trying to pull out her breathing tube. She started out with 7 tubes: 3 IV lines, a catheter for her bladder, a nasogastric (NG) tube in her nose, a chest tube at her incision, and her breathing tube. Last night the breathing tube and NG tube were removed.

She was taking breaths on her own, but she had a hard time when the tube actually came out. Her airways were slightly swollen ( a common occurrence with breathing tubes) and she was working hard to breathe. The nurses gave her a dose of albuterol via a nebulizer (picture and video below) to reduce the inflammation. They also gave her more sedatives to keep her calm. The key is keeping her sleepy and not stimulated and excited. When she gets too excited she starts working too hard to breathe and they just have to calm her down again.

She also had a bit of fluid in her lungs, so she was given a diuretic (Lasiks) which started working right away. To further help with this, she was given a "vibration" treatment from the respiratory therapist. The nurse used an electric toothbrush (really) and held it gently against Evie's chest and back for several minutes. This helped loosen up the secretions in her lungs, which they then suctioned out. Of course, Evie hated this and tried to holler, but her voice is still pretty weak.

Her oxygen saturation levels have been pretty steady in the 80's (except when she gets upset). We are not sure when she will be moved out of the PICU and into the regular pediatric section. I think the doctors would like to see her breathing easier, and be able to take a bottle. She is currently receiving nutrients through an IV.

Below is a picture of the nebulizer treatment. They didn't use the purple dinosaur mask (Evie hated that anyway). Instead, they just held this blue tube close to her face. (The large white cuff on her left leg is measuring her blood pressure, and the large black pad on her left wrist is the wrist restraint.)

She is still receiving oxygen through a cannula (the small tube by her nose). Last night they had her on 100% oxygen, today they were able to reduce it to 35%.

Uncle David is here to hold her hand during the nebulizer treatment.

Aunt Clare brought Evie a Curious George monkey in a doctor outfit (fresh off the plane from Las Vegas!).

I wore pink since it's Evie favorite color. On one of her previous hospital stays, the nurse offered her a choice of 2 sleepers and she batted at the pink one!

Here is a short video of the nebulizer treatment. You can see the mist coming out of the tube. Watch her little abdomen, she's breathing very quickly.

Liveblogging Evie's Surgery (updated 10:00PM)

Latest update: Operation a success! Post-operation photos up.

Evie's surgery is today. Keep refreshing this page as we'll continually edit this post and will be posting frequent updates throughout the day for those of you following along at home!

4:30AM - We were on the road to the hospital with a sleepy/cranky baby!

5:30AM - Checked in and Evie was doing pretty well. She liked looking at all of the other kids in the pre-surgery waiting room. Evie earned a "Best Behavior" award!


"You're going to do WHAT to me? You said we were going to get cookies!"

6:00AM - We're in our family prep room where we had to get Evie into the "clown gown." I don't understand why these things are so big. Doesn't the hospital realize babies are very small? Evie was still being a good little girl and giving lots of smiles.






6:15AM - A very nice nurse, Mary, came in and gave Evie a little check up and asked us a TON of questions, like any allergies, family history, was she in an abusive relationship (I'm serious! She asked us that; it was a "check off box" on her list), did she drink(!?!), could she sit up on her own, could she "wave bye-bye," and on and on. Once again, just like the Clown Gown(TM), I think they need a separate list of questions for babies.



7:00AM - We had to kill some time until the anesthesiologist arrived to talk with us, so Sharon took Evie on a walk around the floor. There were several other babies around and one cute little 4-year old who liked looking at Evie. Several nurses and random strangers stopped to coo over her as well.


"Superstar!" (that's the Clown Gown).



"I'm sleepy; can we go home now?"

7:30AM - The anesthesiologist arrived, along with a surgical assistant (who swooned over Evie). Everyone keeps asking us to "tell them the procedure in our own words." I told the last 3 people that who've asked me; you'd think one time would be enough. After we spoke with them, another nurse came by to wrap Evie up in a warm blanket and take her into surgery. The operation should last 3-4 hours if there are no complications.

8:00AM - Sharon and I are having some breakfast and blogging. Evie did remarkably well for not having eaten since 2:45AM. She hardly fussed at all and was in a great mood. All the staff have been great and we feel really good about the whole thing.

10:30AM - (hour 3 of surgery) One of the surgeon's nurses gave us an update in the waiting room that things were progressing slowly and that Evie was doing "okay." Her oxygen saturation levels were low (in the 60s), and they had a heart/lung machine standing by in case they had to put Evie on it. Normally her levels are around 75-85. The last time her levels dipped to 63 was when her cardiologist rushed her to the ER.

11:30AM - (Hour 4 of surgery) Got another update from the nurse. Her oxygen saturation levels are the same, but haven't gone any lower, so she is not on the heart/lung machine yet. However, they are proceeding slowly. Apparently they have to move her lung partially out of the way to do the procedure and that slight compression affects her oxygen levels. The surgeon has tied off her MAPCAs, has connected them to her natural pulmonary artery, and is getting ready to connect the shunt. The nurse estimates it will be another hour.

1:30PM - (Hour 6 of surgery) We were told that the surgery was essentially complete, they were just closing her up, and that it went as well as could be expected! Evie never had to go on the heart/lung machine, but she did need to use some of the blood that Sharon had donated earlier in the week for her. We were taken to the family waiting room in the pediatric intensive care unit for heart surgery patients, while Evie spent some time in post-op and getting set up in her room.

3:00PM - We were finally able to see Evie for the first time since we handed her off to the nurses at 7:30AM this morning. Honestly, she looked a lot better than I was expecting. Yes, there are a lot of tubes attached to her and it was very difficult to see her like that, but her color looked great, and her hands were a nice bright pink, rather than their normal bluish tint. She was heavily sedated, but not unconcious, and her one hand would weakly grasp your finger, and occassionally her eyes would flutter open and she would briefly look around before falling back to sleep.

3:30PM - Grandpa and Nana Cermak arived to settle in and spend the afternoon and evening with Evie. Sharon had been up since 2AM and we needed to get back home to relieve her father, who had been watching Gavin all day. Dr. Ilbawi, Evie's surgeon, came in to talk with us too. He said the size of the arteries he was moving and reataching were about as thick as the tip of a pen. I am still amazed at how it is medically possible to do what he did. Dr. Ilbawi explained to us that her incision can be quite painful because of the amount of muscle tissue he has to cut though. Poor little thing.





You can see she's got a hold of Sharon's finger there. She has three IV's: one in her right ankle, one in her left thigh and one in her left wrist. She's got a breathing tube, catheter and a tube that goes into her stomach, which sucks out stomach acids and keeps it empty. The "patch" on her head monitors some type of brain function, and she has a similar patch on her back, near her kidney and liver.

You can see dressing on her right side, where the chest tube exits her body. This drains away excess fluid around the lungs. Dr. Ilbawi actually had to move her lung and heart slightly out of the way to do the procedure, and they were slightly compressed, so she's on several medications to keep everything regular and even so the organs can relax and heal.

The actual incision is a bit tough to see from these photos (we didn't want to move her too much). It is slightly above and behind the large dressing with the chest tube. The nurse told us that they stitch it closed from the inside, and only the last suture is visible from the outside, so there will only be a small, thin scar.

8:00PM - The word from my parents is that the anaesthetic is wearing off and that Evie is very alert, relaxed and charming all of the nurses with her big smiles. She cannot make any sounds because of the breathing tube, but she seems to be in good spirits. The nurses will keep her heavily sedated tonight so that she can recover. She should be in the intensive care unit for about 48 hours, and then she'll be moved to the pediatric unit. If all goes well, she could be discharged next Wednesday.

Thank you to everyone who has been keeping little Evie in their thoughts and prayers today: they worked! We took a lot more cute photos of Evie today than are posted here on the blog; lots of her playing in front of the mirror. All of the day's photos are up on Flikr.com can be seen by clicking here.

1st Valentines Day

Hi, it's Sharon here. The kids had a nice first Valentines Day, and especially enjoyed their new outfits from Grandma Cordes! Unfortunately, a few days later Gavin had a fever, so I took him to the ER Sunday night and it turns out he has another urinary tract infection. The only good part was that he got to come home and did not have to be admitted overnight.

Uncle David met us at Edward Hospital to lend moral support while Francis stayed home with Evie. She managed to sleep through the whole thing! Gavin is back on a full dose of antibiotics ( a different one than before) and let's just say the diapers keep getting interesting. He also started teething and has become a real drool-factory. It's funny how one minute he'll be grasphing your finger, and the next thing you know he's chomping down on your kunckle (a lot harder than you'd think!).

Evie is scheduled for her first unifocalization surgery tomorrow - everyone please say a prayer for her! She should be in surgery for 3-4 hours and in the hospital for about 6 days. I took her for a pre-op physical yesterday and she charmed everyone who walked by. Even the nurse that drew her blood said that she had never seen so many people make a fuss over a baby!

"Can we have some of your Valentine chocolate, Mom?"

"I just can't be bothered with all these boys calling me. Let Gavin get rid of them!"

"If anyone wants to date my sister they have to talk to me first! Kung-Pow!"

The twins both want to hold onto their bottles while we feed them - they don't quite have the hang of it but they sure look cute trying!

Viva la Revolucion!

"The revolution will not be blogged! The revolution will be live!"



"Rise up, my fellow babies! Rise up! Cast off your pacifiers and bottles and rise up!"

~Evelyn "Evie" Rose Cermak

International Political Figure
Social Philospher
Infant Revolutionary

Stimulating Conversation

So this is how I imagine the conversation went....


"So Evie, I've been thinking about this whole 'solid foods' rumor that's been going around the Pack N' Play lately."

"Oh yes, I've heard about it too, Gav. What's your take?"



"Well Evie, I think it's just that: a rumor. In fact, I think that eventually you just don't need to eat any more. I mean, you never see Mom or Dad with a bottle, do you?"

"WHAT?! Gavin', that's crazy talk! You've been starting at the mobile too much again!"


"No, no, no, Gav; here's what I heard. I heard that solid foods are real, and that they taste a whole lot better than formula! You know that medicine you take once in a while that you think tastes really good? The Purple Stuff? I heard Mommy call it 'grape,' and it's something called a 'flavor.' They have all kinds of these flavors!"


"No way! So Evie, they have lots of these 'flavors' you say?"

"Yes Gavin, there are all kinds of wonderful flavors. But there's a catch! You have to work to get these flavors! The days of sitting back and waiting for a bottle are over! You have to use something called a 'spoon' to scoop up the flavors and bring them to your mouth."

"No way! You mean that I have to work for these flavors, Evie? Isn't that illegal? It sounds so tiring! I mean, I can't even find my mouth sometimes!"


"Don't worry Gavin, I heard Mommy say that sometimes it takes all day for us to eat these 'flavors'! We can take lots of breaks. Here, why don't you take Mr. Duck here and don't fret about it."


"Yeah, thanks Evie. I love Mr. Duck... what were we talking about again? ... I'm hungry. Are you hungry? When do you think Mom's going to bringg that bottle? Because I've got a diaper change at two o'clock."

Look Who's Talking (Almost)

Gavin and Evie have a lot to say lately. Sometimes when we ask them questions they will babble back to us. Gavin is especially chatty when he's on the changing table!

We're not sure what he's thinking here. Is he pondering nuclear fusion? Plotting more mischief with his sister? Or just striking a cool pose?


"Hey Gavin - whatever you're planning, don't leave me out of it!"


Here he is chattering to the hanging animals on the playmat.


Here he is telling a story to Daddy and the camera.


Here he telling a story to his duck:

Learning to Grasp

The kids have been learning more about what their hands can do. They used to just bat at things, but now they are grasping and grabbing. They have been grabbing their burp cloths and flinging them on the floor. They pull on their bibs which get twisted around. And they still like to grab the hanging animals on their playmats (which they have not yet managed to detach). Sometimes they are REALLY funny!

Here is Gavin with his Pooh Bear rag-doll (we call it "Woobie").




Here he is grabbing the faucet during his bath - luckily he hasn't figured out how to turn it on!




Here he is with his yellow duck (and Nana Cermak) that the nurses at Edwards Hospital gave him when he had an overnight stay for his urinary tract infection. His first stuffed animal!




Here is Gavin reaching for Evie's ear...




He got her! He has done this before on the Boppy but I never was able to capture it. Oddly, she doesn't seem to mind it, even though her expression here looks quite surprised.




Here's a short video of the ear-grabbing:



Of course, Evie has to stand up for herself. Here she is giving Gavin a taste of his own medicine. He sure doesn't seem to like it!