Children with CHDs: Teeny Tiny Superheroes

I want to make a note here that my post has some pictures that might be upsetting for some people, but I wanted to show just how brave Baby Quinn really is, and I feel that his pictures really show that.

A few weeks ago, I posted about my visit with to my cousins’ to meet our newest family edition, Quinn Daniel. What a sweetheart! I had already forgotten how small a newborn baby is! At the time, Quinn was having some breathing troubles, and a few days after our visit we learned he had ventricular septal defect (VSD) and patent foramen ovale (PFO), or more commonly known as a hole in his heart.

Look at those eyes!

The idea of a hole in your heart sounds horrifying, but it actually refers to a large gap between the main pumping chambers of the heart (not an actual hole in the organ itself). VSD is a separation in the lower chambers, and PFO is a separation in the upper chambers. VSD is the most common type of congenital heart defect, and it effects about 1 in every 500 infants. The condition can over work the heart and cause blood to flow around the hole. This causes fluid to get into the lungs, thus causing respiratory failure.

Sleeping Quinn

Respiratory failure is very common with VSD and happened to Quinn. There are many ways to treat VSD, and at first medications were used to try to help Quinn. He took the IV like a champ and let the medication do its job. However after some time passed it was finally determined that the medication was not enough, and he needed to have open heart surgery. Open heart surgery, on a newborn.

Taking his IV like a champ!

Quinn had no idea how strong and brave he really was. Quinn let doctors fix his tiny heart in a 5 hour surgery with 2 hours for the procedure. Because Quinn had to go on bypass, the surgery took longer than average. A Gore-Tex™ patch was used to close the VSD and PFO. Gore-Tex™ is a very strong woven fabric material that will eventually be grown over by Quinn’s own heart cells and become part of his heart. The surgery was the most frightening part of his experience, but it was far from over.

Just out of surgery

This is Quinn just out of surgery. It’s an image that still haunts his mom, but she wanted to share to completely show his journey to health. He’s come a long way since this photo!

In order to check if Quinn was getting enough oxygen after surgery, he had 3 IVs: 2 lines and 1 arterial line to draw blood to check the gases several  timed a day.  All the blood drawing caused Quinn to become anemic. His ventilator tube inflamed his throat. He needed to be intubated twice because his swollen throat caused the first attempt at extubation to fail. Because of the complications with the first failed extubation, he was sedated and on narcotics for so much longer than expected, and thus he had to be on methadone for three weeks to ease his body back to normal.

All that testing is exhausting!

All these complications prolonged his stay at the hospital. Quinn bravely recovered, and for over a week without being allowed to have his parents snuggle him for comfort.

Resting up

Most of us will never have to go through that kind of procedure, but if we do, we are fully aware of the procedure, the potential effects, and what exactly is happening to us. We know that having any kind of surgery, especially one on our heart, would be terrifying. But Little Quinn had no idea. All he knew was that he came into this world and breathing was a bit hard. He went to the hospital with his Momma and Poppa, and because they was brave enough to allow it, Doctors administered IV medications to him,  hooked his tiny body up to a ventilator, and eventually performed a surgery I know many adults would rather avoid than deal with themselves.


He did it all and is now getting stronger and healthier every day. Most people will never have to endure heart surgery, and yet Quinn has endured it within 2 Months of his life! That kind of strength should be celebrated!  He has no idea of his strength. He is everyone’s teeny tiny superhero!

Tiny Super Hero

He isn’t the only superhero though. My cousins Maggie and Ryan also have no idea how strong they are.  Quinn was in the hospital for 20 days, but they comforted their baby while he was poked, prodded, and monitored. I asked Maggie how she was doing, and she told me she could barely keep it together and stop crying because she was so nervous.

I can’t imagine what she was going through, but to be anything but on the verge of breakdown is incomprehensible. It’s so easy for to say “it’s a common procedure” or “the doctor’s have seen this so many times.” But when your baby is sick, it doesn’t matter. Your mind instantly goes to the “what if” part of your brain, and you will give anything to take the place of your baby.

Quinn and Jack

So I told her it was her job to be nervous. It’s everyone else’s job to be calm and comfort you. It works two ways. On the one hand, how bad would it be if everyone else was a nervous wreck? It’d make Mommy’s nerves 1000x worse! On the other, it’s great to be reminded of how everything is going to be OK, even if the mommy part of your brain will worry anyway. A mom’s job is to worry on the inside while kissing her baby to comfort him.

Quinn’s parents did keep it together, and they have nurtured and loved him to the point of healing. He has since visited us twice, has gained lots of weight, and rocks a really bad ass scar.

Chicks dig scars

He still has some hurdles to jump, but with parents like his, I know he’ll soar.

VSD is just one type of congenital heart defect (CHD), but CHDs are the most common birth defects in the USA. According to The Children’s Heart Foundation, a child is born every 15 minutes with a CHD! That’s 1 in 100 births. As common as the conditions are, there is little funding for research. Visit to learn about the conditions, the foundation, and if you can, to donate.

Quinn's Christening

Jack’s Room: 3 Must Have’s for a Baby’s Room

Jack is on the move! Almost out of nowhere he started crawling and pulling himself up in his crib. As soon as he started, I immediately saw all the dangers in my house that needed to be baby proofed. I ran to Babies R Us, bought just about everything, and spent a weekend altering doorknobs and locking toilets – something I thought was ridiculous in the past, until stories of toilets clogged with race cars and towels were brought to my attention. I baby proofed the whole house, and the only thing I have left is to redesign the items on Jack’s bookshelf. The way they’re arranged now, he can easily pull them off and break them.

Jack's Room

We didn’t know if Jack was going to be Jack or Daisy, so we chose driftwood finish for furniture and painted the room a rustic yellow which goes nicely with the pumpkin butter color of our hallways. I figure we can reuse everything whenever baby #2 comes along.

I realize I never introduced you to Jack’s bookshelf or all the work I did in Jack’s room. Initially, it was a craft room/ guest room. Now, guest sleep on the couch, my crafts take over the house, and our recliner rocking chair is no longer in the living room, but that’s OK. One day we’ll figure out where to keep everything.  At my shower, I was given an IKEA bookcase that matched his bed set, and it was filled with books from everyone. Santa, the Easter Bunny, and I have since loaded the bookcase up with more books.

This is Jack's book corner. The walls have these cute Winnie the Pooh book plaques my MIL got for her future grandchild years ago (like before we were married). I'm thinking of making some kind of book piece for the adjacent wall. 

This is Jack’s book corner. The walls have these cute Winnie the Pooh book plaques my MIL got for her future grandchild years ago (like before we were married). I’m thinking of making some kind of book piece for the adjacent wall.

The thing I love most about his room is the tree decal. I ordered it and the window tree decals from TheWhiteTreeStore by LittleLionStudio.

The original tree looks like this, but there’s no law that says that’s how you have to apply it. Instead, I made the leaves look like they are blowing away. The decals are beautiful and easy to apply, and they really make his room charming. White Follow the Little Rabbit Tree Wall Decal by LittleLion Studio

The bed set is forest animals. Jack loves it. He uses the “bedspread” as a play mat, and he loves to talk to and touch the soft wall hangings as we pass them by. It has matching decals, but they were too small for the wall (for me at least). Instead, I used them to decorate his furniture. I used some of them for the sides of this storage bin I use for spare sheets, blankets and other baby odds and ends. I also decked the bookcase out with the rest of the decals that came with his bed set. I think the decals look so charming, and they can easily come off when he’s older.


I also decorated his room with my book bird houses.


So far I’ve made 3, but I think as he gets older I’d like to make some with his favorite books.


In the meantime, I made one with one of my favorite childhood books, The Monster at the End of this Book.


My favorite birdhouse, though, is the Peter Pan house.


When you open the door, you can see Pan’s tree club house! Good thing I have small enough hands to do it.


We have old doors which I thought about updating, but they actually match the style of our house and I’d rather spend the money elsewhere. Above his door is a simple cross, decorated with the finger rosaries I used as a favor at his christening. Next to his bed is a canvas quote I made using my Cricut and love best of all.

Jack's Room2

Now that you’ve toured Jack’s room there are a few things you should know. Every baby list will tell you about things you need for baby’s room, but here are the 3 things I always keep in here that weren’t on any list.

1) Extra blankets behind you on your chair. Babies spit up, and sometimes you don’t even realize it. Don’t ruin your furniture. Drape some receiving blankets over the backs of your chairs.


2) A Rubbermaid bin. Jack grows so quickly and sometimes it feels like its overnight. I always keep a bin in his room so as I struggle to put on a tight fitting shirt, I can just pack it away into the bin for storage. I used to hid the bin behind the rocking chair, but now I got to lazy for that and it’s out all the time.

Storage Bin

3) Tissues and a trash bin next to your chair. This is completely  separate from the diaper bin and wipes, and it is essential. I realized their importance the day I got home from the hospital. When you bring home your baby, you will cry and for a variety of reasons. Maybe you’re overwhelmed, or maybe you’re insanely happy. Either way, you get home and you have no idea how raging your hormones are.


I remember hearing I’d be hormonal and emotional during pregnancy, and I really wasn’t at all. It came after. For me they were all happy tears, and I cried over everything from feeling such deep love for my baby to Suburu commercials. Even reading baby books brought on tears. (Oh my God! He says he loves his puppy! *sob* *sob* That’s so beautiful!) You’re body is going nuts, and there’s nothing you can do about it. Eventually you’ll stop crying and you’ll need those tissues to wipe up baby boogers, but until then wipe your happy and your sad tears, toss the tissue in the trash bin, and if you’re lucky enough to get a colicky baby like me, rock on until the sun comes up.

Jack was always cryingRocking all night long

Texas Craft House

blood, sweat, and glitter y'all