Saturday, July 13, 2013

New project!

When we were first told that Avery had to undergo open heart surgery, to de-stress, I began making her some custom hospital gowns to wear while recovering from surgery (since I thought that the hospital-provided gowns weren't very cozy, warm or cute). The doctors and nurses went crazy over them because they enabled quick and easy access to check her incision and her, she looked adorable! Other moms asked me where I purchased such cute gowns and a light bulb went off: what a great way to give back to the heart community after they had been so supportive of our family. I started making and donating the hospital shirts (called Peek-A-Boo-Boo™) in August 2013 and have been the recipient of grants from PNC and Hearts of Hope S.E. Michigan, as well as the benefactor of generous donations from family and friends.

The Heal-A-Boo-Boo Project is meant to provide some normalcy for families of babies and toddlers undergoing surgery or other medical treatments. Hospital visits are no fun...especially for little ones. Nothing helps make them more comfortable than soft cotton wrapping them in a warm hug while ensuring they don't miss a stylish, tiny step in these adorable shirts, Peek-A-Boo-Boo™. Please pass along this site if you know of children who could use a hospital shirt and legwarmers:

Monday, June 3, 2013

Step one: suture removal

Avery had the sutures removed from the bottom of her scar and chest tube today. She was not impressed at all and I felt horrible having to be the one to keep her arms and legs from flailing all over the place. This was my first good look at the scar (she is keenly aware of it and will not show her belly or chest to anyone) and I am amazed at the beautiful job Dr. Ohye did with it. When she gets older, she'll be able to wear a v-neck shirt and no one would be able to tell she had open heart surgery. It is honestly SO much better than I had expected. Avery is also completely off of the pain meds and only to take the lasix until her next appointment at Mott. Woohoo!

In the meantime, here are some pictures of Avery...

The day after she came home. You can still see a lot of bruising and swelling from her hematoma, but she was doing great!

A week after we returned home:

Two weeks after we returned home with her surprise from Charley's Heart, an amazing organization formed in honor and memory of Charlotte (Charley) Ritchie who lost her battle with CHD...

We've come to find that this "heart" community is so giving, supportive and kind...and we are so grateful for them and especially for our sweet Avery.

Wednesday, May 29, 2013

Guess who's home?

On Monday evening, Avery's nurse was able to take the IV line out of her foot, which meant that she could walk! After a few cautious steps, she was off and running in the unit for more than two hours...I couldn't get her to sleep until 9:20pm!

The next morning at 5:15am, Avery woke up ready to go. So we ran around some more, trying to kill time before her 8am x-ray. The echo got bumped to 12 noon, so the poor thing had been fasting since the Monday night.

After a sedated echo and EKG, we got the great news that she was clear to go home! Avery was so we are with her favorite nurse practitioner, Tammy:

Daddy blew some bubbles to celebrate:

Avery made me chase her through the lobby of Mott several times while we waited for Doug to pick us up. I didn't think it was possible, but I actually now believe that she has twice as much energy as she did before.

When we got home, Tessie and Avery were SO happy to see one another. Avery had been asking for Tessie in the hospital and obviously, Tessie missed her too!

As for the first night home, it was a LONG night. I spent a couple of hours trying to get her prescriptions filled at various pharmacies and I finally ended up having U-M switch one of them so I could get it that night. By the time I got home, it was after 8.

Avery went to sleep okay, but she no longer takes medicine well and I can't say I blame her. She tossed and turned in discomfort through about 12:30am, so I tried to sneak in some medicine here-and-there to help her. She was up at 6:15 and ready to play, which means I am utterly and totally exhausted. I am very happy she's back to normal, but I would love to catch up on some sleep myself!

Today is Avery's 20-month birthday and she celebrated by dancing (click here to watch)...what a great day!

Monday, May 27, 2013

Staycation at Mott

The last couple of days have been a blur and have gone by really fast. We are so thrilled with her care and with everything the medical and support staff at Mott have done for us. Here's a quick rundown:

Saturday: Avery got moved to the regular pediatric cardiology floor exactly 24 hours after her surgery finished...woohoo! Here's a picture of us getting ready to move:

After getting to the main floor, Avery finally got to eat. She had woken up crying for ice cream, so that's what she got. She even fed herself!

Avery spent the rest of the day sleeping, with the exception of more x-rays. Her heart was showing that it was enlarged post-surgery compared with her x-ray the day before, so it was flagged as something to watch.
Sunday: Avery slept quite a bit on Sunday, but we had visitors in and out all day. She had more blood work done, as well as another x-ray. The fluid in her lungs hadn't drained, so the doctors and nurses decided to give her one more day before they would put the tube in to drain it.
On the positive side, we were able to take Avery for a little stroller ride through the unit, which she loved:
She started showing more signs of her usual self...we heard a lot of "No!" yesterday, which is toddler-speak for just about everything:
At this point, the concern is the fluid in her lungs and her high heart rate. Toddlers her age should have a heart rate of 100-120 and she has been in the 150s and 160s. The medical staff said that it is not unusual for kids' hearts to keep trying to beat as hard as they did pre-surgery...that sometimes, it takes several days for their bodies to relearn how to work.
Right before dinner and bed, the nurse found that Avery's IV line had to be replaced. Because the poor thing had been poked so many times in both hands and arms, there was no spot to give her a new line, so they tried her foot. What an excruciating took two tries on both feet to find a line they could use. Avery screamed and screamed and fell right to sleep without eating dinner, as she was so exhausted.
Monday: Thankfully, Avery slept amazingly well and her heart rate finally dropped to the high 120s and low 130s. One of her anesthesiologists stopped by to discuss he case study they are trying to publish based on what they had to do for Avery's surgery (they ended up giving her four different meds, all on max because she wouldn't go under and their team had to closely monitor her brain activity on a BIS machine). They were very surprised that more than three meds were needed to put someone so little to sleep!
After morning x-rays and ultrasounds, the medical staff determined they would need to get rid of the fluid with another tube. So, the good news was that she was getting her chest tube out since that drainage had pretty much stopped; the bad news was that she had to have another line put it. Here we are pre-procedure:
Avery had to be put under for the tube removal and placement and, no surprise, she needed extra meds! The ICU surgical staff were shocked about not only how much medicine was needed for her, but also how quickly she popped back awake. After less than a half-an-hour, we were brought back to see her and this is what we found:

Yep...she tried pulling out her lines and the blood pressure cuff and tried to plug them into something else. An electrical engineer on our hands, perhaps? This was less than 10 minutes after they finished surgically removing her chest tube and stitching her up! I think the only thing that will stop this child is kryptonite!
Dr. Smith and his team in the ICU were able to aspirate the fluid in her lungs, so no new tubes were needed. Yippee! Once we got back to the room, she was unhooked from all of the monitors and the morphine, so we decided to take a trip to the Michigan Game Day Experience on the 8th floor:

Avery's last x-ray came back clear, so we're just trying to get her to nap now. Seems like she's getting back to her sassy ways...God, we love her! ;) Now, if we can just get some rest...

Saturday, May 25, 2013

Surgery day

For all of those who followed us on Facebook, you are aware that Avery's surgery was a success. Everything went according to schedule and within just a few hours, I was holding my sweet baby in my arms. Both shifts of nurses have dubbed Avery the feistiest toddler ever. Last night, it took four nurses and a doctor to hold her down to get her vent out. This morning, three nurses had to hold her down to suction her...after which, she stood up in the crib and tried to jump over the side. They had me hold her in the recliner again, but that didn't work so well because she tried to slide down my legs to escape...she then started yelling, "Ice cream! Ice cream! Ice cream!" LOL. She is still my little girl! Here is a picture of Avery when we first got to see her yesterday. I won't be posting close-ups of her with her scars because I don't want those all over the internet, but I thought this would give our friends and family a sense of how her post-surgery care began:

Here's a picture of the nurses and doctor trying to get her vent out. They are laughing because of how she was fighting back. They have really been getting a kick out of her:

Last night made for a long night. Thankfully, our social worker was able to get us a room at the PICU Ronald McDonald House, which was awesome. Doug was able to get a good night's rest and we were able to take long, hot showers there this morning. Because Avery is in the PICU bay, there isn't a lot of privacy, so the Ronald McDonald House (just down the hall from the PICU), has been a Godsend...clean, private room, food, snacks and a Keurig!

As for me, I slept on the pull-out chair behind Avery all night. I was so exhausted that I had no problem falling asleep...just staying asleep! The PICU wasn't nearly as noisy as I thought it would be, however, Little Miss Sassy Pants has to have yet ANOTHER uncommon feature: with anti-anxiety meds, she has the reverse reaction..they make her hyper. The medical staff tried several, but nothing worked. Lucky for me, Avery's nurse, Mary, was able to be with her all night so I could get some rest.

She had another chest x-ray in the middle of the night and it showed that her heart was englarged compared to yesterday's post-op x-ray, so she had another ultrasound this morning to rule out fluid around the lungs. Everything looks good for now and all she has is a line in her neck from where the anesthesia went in and a morphine drip. If her last round of bloodwork shows her electrolytes are up, the line in her neck will come out and we'll be able to move to the regular pediatric cardiology floor.

Doug and I can't express enough how appreciative and overwhelmed we are by the love and support we have received. We started this whole website/blog/FB page to make it easy to share info about Avery's diagnosis and surgery without having to retell all of the facts several times over...and it has brought several people into our lives that we have never even met or whom we haven't spoken to or seen in years. So, thank you, from the bottoms of our hearts.

Final picture of the is Avery's posse...our loyal support group of grandparents, uncles, girlfriends and Godparents who have been with us every step of the way...including a 6am start time at the hospital yesterday. We love you all very much and couldn't have done it without you:


Friday, May 24, 2013


This is the toughest day of my life. I barely slept last night and when I did, I had nightmares.

We have a contingent of nine people here with us this morning, but Doug and I are in the family waiting area, just trying to calm down a bit. We met Avery's surgical care team and everyone was wonderfully kind. Dr. Ohye also stopped in to say hi and was reassuring as always.

The main concern is the alternative anesthesia. With the family history of malignant hyperthermia on Doug's side of the family, the anesthesia team has been prepping for more than a week for Avery's surgery. It is incredibly rare to have to treat someone so young as if they have MH and even more rare to do this treatment in a cardiac surgery. So rare, in fact, we were asked for our consent for U-M to publish a case study on Avery. She is one in 100 for her heart defect and 1 in a million for her anesthetic care. I've always said she's one in a million, but no parent wants their child to be THIS rare...

Regardless, we know she is in good hands. They gave her some medicine to get sleepy and although she acted like she was dozing off, every time the doctors or nurses left, she popped her head back up, started jammering and tried to get up and run away. Hmmm...I think we know how she will be as a teenager... ;)

I will update more later, but thank you all again for you support and prayers!

Wednesday, May 22, 2013

Pre-op work-up

Yesterday was a LONG day at Mott. We were scheduled for a sedated echocardiogram at noon, but a nurse called in the morning saying they weren't going to sedate Avery and that she shouldn't be fasting...thank goodness because the poor nugget was starving.

When we got to the hospital, we were promptly whisked to a room to get her weight and height, but were then told that an echo wasn't ordered. After half-an-hour of waiting, I went to find someone to figure out what was going on because the little boy in the room across from us, who had just come in a few minutes earlier, was already getting his EKG. Meaghan, a Mott social worker, happened to be walking by and I think she sensed I was upset, so she came into our room to go over all of the "extras" for Friday's surgery: where we will be going, sleeping arrangements, procedures, facilities, etc. She also arranged for us to have a tour of the ward after Avery was done with her appointments. Meaghan was a definite blessing!

Finally, Avery was brought in for her echo and EKG. She was SUCH a good girl. I cuddled up with her on the bed to watch Shrek and as a whirlwind of people came in and out (research study rep, social worker, child life specialist, radiologist), the only time she got upset was when someone stood in front of the TV or talked over her movie. Ha! At one point, the radiologist came in to take some additional images, which worried us...we had been afraid that they would find additional issues during this echo...

We had a bit of a wait to meet with her new cardiologist, Dr. Fifer, who was wonderful. Avery got to see her favorite nurse, Veronica, and was quite happy to play with the Matchbox cars in the room (the Chaborek in her). Click here for a video of Avery checking out the view...she sure loves looking out the window!

The wait was well worth it, though, as Dr Fifer had excellent news: one of the holes in Avery's heart actually decreased in size, therefore, decreasing the pressure on the walls of her heart...the main reason for the immediacy of her surgery. The largest hole (4 mm) had not decreased, but we were so happy to hear that the pressure wasn't as high. Dr. Fifer also talked about how this surgery should be the end of her heart issues and that she will be able to do all of the things other kids can do...even play soccer and hockey like her mama. :)  In addition, she said that because Avery is so fair-skinned, it is very likely that her scar will fade almost completely and that in the years to come, it will be almost unnoticeable. I'm glad the fair complexion I passed on to her--that I often curse for making me look pasty--is actually an advantage in this situation.

After meeting with Dr. Fifer, Child & Family Life Services took us to the ward where Avery will be staying once she is out of the ICU. Each child has his or her own nurse solely dedicated to them, which is amazing. The ward was very nice and Avery was soooo excited to see the great playroom stacked with toys, books and art projects...I think she thought we were at Toys "R" Us! All of the nurses and doctors were going crazy over how cute she was in her little Puma track suit and bows, so I am sure she'll have no shortage of new friends!

We then we down to the anesthesia/pre-surgery department where we spent close to an hour. With Doug's family history, they will be taking extra precaution with Avery's anesthesia and will likely be giving it to her through an IV versus gas. This can create some complications in heart surgeries, so please keep in your prayers not only the surgeon's hands, but also the anesthesiologist's expertise. Again, we are incredibly blessed to not only have Dr. Ohye as her surgeon, but she will also have the head anesthesiologist working on her team!

Unfortunately, our day of testing and meetings was not over, so we headed to radiology to get a chest x-ray and then off to the lab to get blood work. What a way to end a long day for the poor nugget: getting strapped to a chair with her arms above her head for an x-ray and then getting poked for blood! Interesting side note: the x-ray showed three more teeth coming through in the back, so that would explain her picky eating habits lately.

So, right now, Avery's surgery is scheduled for 8:30am on Friday, provided there aren't any emergency surgeries that would bump her. We'll find out for sure late Thursday afternoon. Here are a couple of photos of our little cutie yesterday:

Thank you for your continued support and prayers. I know the power of prayer has helped shrink one hole, so let's pray for a successful surgery and easy recovery!

Also, happy birthday to my wonderful hubby, Doug...what a way to spend your birthday, but you sure are a dedicated husband and father. We love you!