Tales from the Boppy

It's Sharon again....whenever I feed both kids at the same time, I use my Boppy pillow. I just put Gavin on one side and Evie on the other, with their heads toward my knees and their feet toward my back.

I never know what to expect: sometimes they are calm, sometimes they are amusing, and sometimes they fuss. If Gavin sees Evie being fed, he insists on being fed as well – even if he just ate!

Gavin also likes to reach out toward his sister when they’re on the Boppy. They are just learning how to grasp things, so sometimes he’ll grab her ear or her bib. Sometimes he’ll gently touch her cheek and sometimes he pushes his fist into it. Interestingly enough, she doesn’t mind as long as she is getting her meal. She just ignores him and keeps on eating.

Here are several photos and a video that capture our Boppy time:


"Hey, Evie - when Mom's not looking, let's make a break for the Christmas cookies!"



















This picture has been posted before but it was so cute I had to show it again!

Evie & The Purple Dinosaur

Evie is still sick with the Metapneumo virus , which landed her in the ER and a weekend hospital stay two weeks ago. This upper respiratory infection really kicked it up a notch over the last few days and she began a thick cough the day after Christmas and having more difficulty breathing through her nose, which makes feeding difficult because she gets very frustrated trying to breath while taking a bottle; nearly every breath is a "snort." Sometimes she spits up a bit after a longer coughing session, which has us scrambling to hold her bib up (we've gone through more bibs than I can count in the last two days).

Watching Evie's little self cough so hard and struggle to clear her airways is one of the hardest things I've had to watch; even more so than everything I've seen happen to her at her hospital stays.

We've been shooting the saline solution up her nose and sucking out the loose mucus quite often, but she hasn't been sleeping well, and I needed to stay up with her last night on the couch to make sure she slept in an upright position becuase she cried immediately as soon as we tried to put her in a bouncy seat. As you can see, I didn't even get a chance to change clothes.




Sharon took this pic of the two of us around 9AM.

We saw her cardiologist for a checkup Thursday afternoon and her oxygen levels were pretty good (around 74-83). She cannot have her first heart surgery for at least a week or two after her virus clears up, so we were disappointed that she seems worse than ever two weeks after the diagnosis. I took Evie to see the pediatrician this afternoon, and she gave me a script for Xopenex, which is administered via a nebulizer (a nebulizer uses forced air to turn a liquid medication in into a mist that can inhaled deeply into the airways). Although the Metapneumo virus--like all viruses--cannot be treated with antibiotics, hopeful the Xopenex will break up the mucus and help her breath better.


The pediatrician gave me a baby-sized mask (that was still too large for her face) for the nebulizer that makes it look like she's wearing novelty animal snout mask, only this one looks like a purple dinosaur (or maybe an iguana?). The medicated mist is orderless, but Evie hated having the mask against her face and screamed bloody murder for half of the 15 minute treatment, and then oddly fell asleep for the last part. I posted a picture below of the mask and a short video of the treatment. I'll spare you the first video I took where she was screaming the whole time. She is supposed to get a treatment every 6 hours.

We really hope this treatment works!

[UPDATE] After just that first treatment at around 8PM, I think we've already seen some results. She is "snorting" a lot less with each breath and I have not heard her cough very much through the monitor. She was breathing very calmly after her midnight feeding. Hopefully she'll be in much better shape after a weekend of treatments for her Monday morning follow-up appointment.


Evie says, "I am a champion sleeper! ... when daddy is holding me, that is."




The purple dinosaur nebulizer mask. It's too big for her face, so we have to hold it and try not to mash it into her eyes.



Here's Evie with the mask after she's fallen asleep half way through the treatment. The machine is quite loud.

First Christmas

The Twins had a wonderful first Christmas with the Cordes and Cermak families, spending Christmas Eve (day) at Grandma and Grandpa Cordes' house, and spending Christmas Day at our townhouse with the Cermak clan. All of the photos from the two days are uploaded here, and a few select ones are posted below.

We had learned our lesson from Thanksgiving that staying late meant cranky babies, so we started the days much earlier. Instead of arriving at 5:30PM, the presents had been opened, dinner was eaten and we were heading back home by 6:00PM, which worked out really well for the kids nap schedule. Grandpa Cordes grilled some delicious roast beef and pork for Christmas Eve, and for brunch on Christmas Day, Clare and her boyfriend Steve baked some bread and cheese sandwich rolls with roast beef and ham.

The twins were definitely the big winners of the night as far as presents go. I think they received more outfits than I've bought for myself in the past year! Of course, they're all adorable and they're wearing some of their new sleepers today.

Evie is checking to make sure her hair looks good for the family photo.

Evie (elf in training!) and Gavin.

We just couldn't get them to stop fussing for this photo!

The Cordes Clan

The Cermak Clan

Godfathers Brad and David with Evie.

Grandpa Cermak chatting with Evie.

Grandman Cordes with Gavin. Vesele' Vanoce!

Sharon and Nana Cermak with an afternoon snack.

The rest of the photos of Babies' First Christmas are on Flickr. Click here!

Smiles make it all better

It's Sharon again! Today I took Gavin to see a pediatric urologist. This is the specialist who will help figure out why Gavin had a UTI 2 weeks ago. Gavin is back to his normal sunny personality. He is still on antibiotics, so he still has the interesting diapers (including a major blow-out for me yesterday, which resulted in him needing an immediate bath. Uncle David was here to see, hear, and smell it!)

The first step for Gavin is a test called a VCUG. This will show if he has vesicoureteral reflux, which is when urine from the bladder goes backward up the tubes to the kidneys. This will happen in mid-January. Until then he will stay on antibiotics to prevent more UTI's.

On another note, the kids have been smiling more consistently. Gavin started smiling 4 weeks ago, and Evie about 2 weeks ago, but it took awhile for me to capture it on camera. Whenever I pull out the camera they suddenly get a very studious look on their faces. Below are some pictures I was able to get.

Evie is Back Home (still sick)

Evie is back home, but she's recovering from a virus so the surgery will be delayed until it's out of her system. I brought her home Sunday night after her weekend stay at Christ Hospital since last Thursday night. Sorry about the lack of update on the blog here but she has been a real struggle (fussy, crying) every evening from the time I get home from work until she crashes around 11PM (and I usually end up crashing from mental exhaustion shortly thereafter!)

She was transported to Christ Hospital last Thursday evening after being admitted into Edward's ER. After taking a blood sample, the doctors noticed that her white blood cell count was high, which led them to believe she was possibly fighting an infection. This had to be confirmed because she could not have surgery if she was sick. It took about 24 hours to determine that she had an upper respiratory virus called "Human Metapneumovirus" ("meta-new-omo") aka "hMPV." It's similar to the more severe infection called RSV (for which Evie gets monthly inoculations against) and is common in infants.

It's a fairly new virus (discovered in 2001 in the Netherlands) and has become more common. Apparently every child under the age of five will have had it at some point. We didn't even realize she was sick as she didn't seem to have any physical symptoms, although she did develop an increase in... shall we say, mucus production over the weekend. The nursing staff didn't know what kind of infection Evie might have, so everyone that saw her had to wear a gown, mask and gloves. Although the symptoms are not too bad, the unnerving part about the virus is that she could have gotten it from anyone, because the carrier might have had the virus, but was not sick from it. So now we're even more paranoid about people seeing her in an attempt to limit your exposure to anything.

The doctors couldn't give her anything to directly treat the virus other than "preventative maintenance," i.e., making sure that she's eating, getting rest, keeping her nasal passages clear, not running a fever, ect. So, we I was able to bring her home Sunday night. Sharon I are very grateful to Grandma and Nana Cermak for being able to spend so much time keeping Evie company in the hospital (so sorry about the gowns and masks you had to wear all day!), and for Grandma Cordes being able to stop by on the weekend to help with Gavin. We're truly blessed to have such wonderful and supportive family members around us!

Because she is sick, she cannot have the surgery right now (although they were prepared to do it on Friday before the doctors learned of the virus). So, we're still waiting for now; these ups and downs are harder than anything else right now.

Gavin has his first consultation with the pediatric urologist tomorrow so look for an update about that soon. He's doing well and seems to be completely recovered, although we're still giving him medicine (that causes him to have some interesting diapers).


Evie and me in Edward's ER, waiting for the transport team to Christ Hospital.


Edward's Pediatric ER is pretty nice! I'm on a first name basis with the nurses.

We had a serendipitous encounter in Edward's ER last Thursday, in that Evie's nurse had been a heart patient of Dr. Ilbawi (Evie's heart surgery) 28 years ago!! Our nurse had been born with a congenital heart defect that Dr. Ilbawi first worked on five days after she was born. She has since had five heart surgeries because she has an artificial valve that needs to be replaced every so often.

It was amazing getting to talk with her because the long term effects of Evie's condition is something that Sharon and I have been very worried about. This woman played competitive sports in high school and college (golf, swimming and softball) and while she doesn't run any marathons, she feels great. I feel like God gave us this chance meeting to help give us some peace because Sharon and I were complete wrecks on Thursday night.


The transport team was very nice. Evie had been crying in my arms for over an hour, but she stopped crying for all these guys (who thought she was a perfect little angel).


All checked in and ready for bed at Christ Hospital.



Back home with brother Gavin after a long weekend!

As always, thank you to everyone for all of the prayers and calls of support!

Evie's in the ER

Just a short update while I'm waiting for Sharon to call me from Edward Hospital's ER unit. Sharon had taken Evie in to see her cardiologist for her weekly oxygenation level check up and her levels were really low, around 60% (normal for her is 85%). The doctor thinks that perhaps her MAPCAs are thinning as she gets bigger and cannot keep up the flow level required for her size. The doctor gave her some oxygen and she went up to 78%, but the doctor still felt that this was too low, and started the process for having her sent to Christ Hospital and perhaps doing the surgery very soon.

The transport team from Christ will be picking her up at 8:30PM tonight (Thursday) and take her from Edwards to Christ. I'm not sure if when she will go into surgery as we don't have a whole lot of information at this point. She doesn't seem to be in immediate danger, but obviously things are moving quickly. Please say an extra prayer for little Evie!

It Wasn't The Bubble Bath...

Gavin spent about a two days in the hospital, and we were able to bring him home Saturday morning. He seemed to respond well to the meds and his fever came down, although he still didn't feel very good, and the meds tend to upset his stomach. He's eating a lot, but it's been very hard seeing him in pain and being so uncomfortable.

The meds we give him twice a day irritate his stomach and he's been going through a lot of diapers. We're giving him liquid children's Tylenol and he seems to like the grape flavor! I think it's the first time he's ever tasted anything other than formula or breast milk, so it's gotta be good! Although he had better not expect us to start flavoring his formula.

A big thanks to Godfather David and Nana Cermak for spending so many hours with Gavin in the hospital on Friday (and to Aunt Sassy for driving Nana!), and to Grandma Cordes for pulling a Saturday morning shift to watch Evie while we were with Gavin.

It turns out that he didn't get the UTI from a bubble bath (although we are going to stop doing that), but from some sort of blockage between his kidney and urethra that is preventing urine from reaching the urethra, and so it is pooling elsewhere, resulting in the infection. An ultrasound performed on Gavin Friday night showed some sort of anomaly and the doctor theorized there could be a small blockage or "a kink" in his plumbing. If this all sounds very vague, it's because it is. I'm anxious to get better answers from the specialist.

The ultrasound is just a screening so we're going to have to see a pediatric urologist. We really hope it's nothing too serious (Gavin is supposed to be the healthy one!). Sharon has a lot of doctor's visits this week: taking Gavin to a follow-up on Monday, the twins' 3 month check-up on Thursday, and Evie's seeing her cardiologist again on Thursday as well.

Here's a short video of Gavin playing with his new mirror. He likes looking at his reflection and spinning the ball on the mirror.




Here's Gavin reading Charlie Brown's Christmas with Grandma Cordes:




A few shots of Gavin being silly with Mom:







We hope you feel better soon, Gavin!

Gavin Walks In Evie's Shoes

Gavin got a taste of what it's like for Evie to get poked and prodded because I rushed him to the ER Thursday night around 9PM because he had a fever of 102.4F. Turns out he has a urinary tract infection ("UTI"). He was given some liquid Tylenol and that reduced his fever to 98F degrees by 1:30AM, and he was much calmer, and sleeping.

The nurses had a heck of a time trying to get an I-V into him (he's only 2 months old!). Three different nurses tried until they had success. Poor little guy was stuck 4 times until one worked. It was hard hearing him cry that much, but at leastI'm somewhat used to it having gone through all of this with Evie already. He was admitted to the Pediatric (PICU) unit and they're going to keep him for 24 hours, as they have to administer 3 doses of the antibiotic via an I-V every 8 hours.

Sharon had noticed that he was unusually fussy throughout the day, but the unexplained fever didn't hit until the evening (which is one of the symptoms), and his crying was different. It wasn't his usual "I'm hungry" cry, but it was more of a painful wail. It was very upsetting becuse we could tell that something was wrong, but we just didn't know what; but he was clearly in uncomfortable, and Sharon could tell that "something wasn't right" with him. We took him and Evie to Evie's appointment with her cardiologist (more on that below), and he slept during the whole visit, but the fever really cranked up when we got home.

We took his temperature and called the on-call pediatrician when we saw that it was so high. The doctor told me to take him to the ER so I zipped on over there. Unfortunately, it had begun to snow heavily around 8PM and the roads were terrible, so I had to do 20-30MPH in 2nd gear the whole way, but luckily there were no incidents getting to the hospital.

One of the ER nurses said that he probably got the UTI from having a bubble bath. I'd never heard of that or read about that, and the nurse in the pediatric unit had never heard of it either. However, several of the websites that I just searched for info about the infection state that bubble baths can irritate the urethra. The only rule we knew was "no submersion until the umbilical cord is healed."

So, Gavin should be fine, but this was quite an ordeal for parents and babies. The ER and PICU staff at Edwards was great and made the experience better. On the plus side, we got to weigh him, and he was a whopping 9 lbs. 14 oz.! He's gained almost 3 lbs in a month, and he also grew 3" longer.


Evie & Gavin

Quick update on Evie. She is seeing her cardiologist weekly now to monitor her oxygen saturation levels. She is still doing good, and--barring some unforeseen complication--the surgeon wants to put off the surgery until mid January so that she gets bigger. He is going to be cutting and reattaching her arteries that send blood to her lungs, and attaching a gortex-like shunt to the pulmonary artery, and the more mature her arteries are, the better it is for the surgeon to make good, secure stitches.

Unfortunately, they doctors do not recommend that Evie (or Gavin) go to day care because of exposure to germs, and also, because Evie will be much more fragile after her first surgery, and up until the second surgery is performed. We have to try and not let her cry at all (sounds impossible, I know), but there is a risk that prolonged crying (even for 5-10 minutes) can jar the shunt loose. We were specifically told to spoil her and do our best to prevent her from crying after her first surgery.

So, now we're frantically starting a search for a full time nanny. So if anyone knows of someone, please let us know!

All Tuckered Out

I had no idea what a luxury and/or hot commodity sleep would be once the twins were born. Sure, I'd read the books, seen cartoons, heard the stories... but nothing really can prepare you for it until you experience it. For instance, it's 2:35AM and the kids are both finally down, and here I am blogging because now I'm awake. So I thought I'd post a collection of sleepy pics and it would also be a good time to talk about our sleeping struggles with the kids.

We're slowly trying to get them on a sleeping schedule, but it's not easy. While they will usually sleep fairly well during the night, and sleep for long stretches, they hardly nap during the day at all. This is especially tough on Sharon and her mom because while Gavin is content hanging out in the pack 'n play staring at his mirror, Evie exists in one of two states: sleeping or crying/fussing. She rarely has quiet alert time, and if then only for a few minutes at a time.

All the books say that newborns should typically get sleepy after 1-2 hours of wakefulness, but our kids fight that sleepiness tooth and nail. They'll yawn and their eyes will droop, but then they'll shoot back open and the crying starts again. After seeking lots of advice from friends (extra thanks, Robin and Caresse!) and several books, we finally decided to try a "10 minute" routine (thanks, Mary!) where we put Evie down when we see her drowsy ques, and only let her cry for a maximum of 10 minutes before calming her and putting her back down. This helps teach her to sooth herself and how to fall asleep on her own.

Sometimes she'll fall a sleep during the second 10 minute session, other times we'll give up after the 5th session with no luck. It's not always perfect, but I hope we're getting there.

As you can see in the video, they're all bundled up for napping, but not a lot of napping is going on yet!



Napping on Sharon's lap on the "Boppy." We have a much larger Boppy that is specially made for twins, but they like to snuggle on the smaller Boppy.





Content in their crib. Evie has her "frog" on her, which is a small beanbag the hospital used to keep her snug. She seems to like it, and also likes sleeping on her side.



As you can see, I end up napping with them a lot on the couch on the weekends. These shots are typically from Saturday and Sunday mornings.











Gavin sleeps anywhere and everywhere. Here his is with Nana Cermak.



I came downstairs the other day, about to leave for work, when I saw this cute scene of Mommy and Gavin all tuckered out.

Evie sleeping on Uncle David.

A full belly and ready for bed!