I'm Still Here

 Hey everyone, if there is anyone who reads this,

A ton has happened over the last few years and I honestly thought I had written much more recently than this... We moved from California to Colorado to North Carolina in the last 3.5 years. I became a registered nurse. My husband joined the army and finished his commitment. Our oldest is 17 and our youngest is 9. The kids are really growing up! I'll have to give an official update at one point. 

Due to the fact that this is a public page, I've never shown the faces of my children. We still aren't sure about that. But I am not even sure if people actually read this lol. It's been a good tool to process my son's heart condition, surgeries, and all that has come with it. 

Micah is 11 years old, now, and almost 7 years post-op his 3rd open heart. Can you guys believe that? I literally started this blog to be able to cope with the tremendous emotions and pains that Micah's diagnosis came with... I've been able to sprinkle in parenting advice, cooking ideas, and our journey with congenital heart disease along the way.

One huge thing that has remained the same is that Jesus Christ is my Savior, my king, and he has saved my son, time and time again. I couldn't have made it through any of this without God. 

Thanks to anyone who's come along for the ride. I think it'll be fun to write more. I know I've had ideas stored up in a file, here, somewhere, for a long, long time. ❤️

The Night That My Whole World Changed

I was pregnant with my fifth child... I had already given birth to four healthy children, including a set of twins who were brought to full-term. Every pregnancy was pretty typical, and nothing felt anything but normal. But this pregnancy was different. Something was off.

Early on in this pregnancy, I had some awful feelings in the pit of my stomach, like something was deeply wrong with my child. Every doctor appointment I was literally waiting for the doctor to tell me what was wrong with my baby. Every doctor appointment would end the same, essentially: the baby is healthy, the pregnancy is going well, there's nothing to worry about.

This feeling haunted me, however. The worry slipped away for no more than a day after checkups, and it was always quick to come back and swarm my mind. "You're never going to bring your son home from the hospital, Rebecca. Don't waste your time setting up his clothes and crib. There is something very, very wrong with your baby."

I remember sharing the feelings with my husband, occasionally, and some other close relatives, here and there. But no matter what, nothing took the feeling away.

Time got closer, and it was finally the day to have my baby. My husband and I prayed about our son, and told God that we would love Micah, no matter how he came. We blissfully went on with pre-op and waited for the arrival of our boy.

Micah was born, and everything changed. My son was born with severe heart defects and would not be able to survive without three open heart surgeries! The shock that went through my husband and myself is in-explainable. Suddenly we were in survival mode.

Fast-forward to six years later, we have been through so many periods of waiting, wondering, and hoping for the future. Seeing our son hooked up to wires as an infant, too weak to nurse until after his first surgery, was absolutely shocking. Most people carried on with their lives and sent us words of encouragement along the way. All the while my husband and I were allowing our minds to wrap around the insane reality of what it would mean to have a sick child.

Micah wasn't "fixed" with his first, second, or third surgery. The likelihood of him requiring more surgeries in the future is pretty high, and the need for more heart catheters is 100% going to happen. He's been under anesthesia 6 different times, he's had countless blood tests, chest x-rays, special shots, and other examinations. He still takes medication every 12 hours to control his blood pressure, as well as a daily aspirin to prevent blood clots.

I believe that I developed PTSD from having a child with such life-threatening issues. Seeing a child suffer and have to recover from something as huge as open heart surgery is something very difficult to wrap one's mind around. It's something I'd never wish upon anyone, yet I know dozens of people who have gone through the same thing, or worse, with their own children.

I guess the reason I'm writing this is to share that if you're going through this with your own child or someone you love, I want you to know that you're going to get through it and you are NOT alone. It's the hardest, scariest thing in your life to see such a small being go through surgeries and hospital stays, etc, but you will get through it. Things will get better.

I believe that I was able to work through my PTSD and heal along the way, because I sought support and didn't clam up (at least not forever). There is help out there for you. Facebook will most likely have a very specific support group for your child's exact disease. People out there know exactly what you're going through, and it is SO comforting to know others who have walked the same path you are just beginning.

I know for many of you, you have gone through these same experiences - whether you found out during your pregnancy or at birth. I hope you have found the support you need to adjust to your new life. More than anything, I want you to know you're not alone, and there are people out in this world who want nothing more than to help you through.

I'm one of them.

If I don't know you, but you are experiencing something like this and you feel like you are alone, message me. I will be your ear.

Becca
heyimbecca@gmail.com

A few simple parenting hacks for BIG families!

I'll be the first to admit that I'm not the most organized person, and this poses a problem when it comes to the fact that I have six children. Here are a few things that I have successfully instituted in my house that really helps my family of six kiddos function.

In the bathroom

Required:
4 (or so) of the same color/design towel per child
 
Each of my kids has their own designated towel color. We bought them each four of the same towel so that they'll always have their own towels available, no matter how far behind I am on the laundry (shhhh)

 

Ohhhh the messed up walls and banged up door... a peek into my picturesque house. I know that it's quite impressive, but no, I do this all without a personal decorator. I'm proud of myself ;-)

For the beach or the pool


Required:
2 large swim bags that zip
Designated towels for each child

This is probably my favorite organizational tool. It's always a nightmare when I don't follow through with this system and get lazy, because when I'm not prepared for the beach or pool, we run around like crazy trying to find our suits and towels and sunblock and it's a MESS!!!! We have a few swim bags that we keep stocked at all times (ok, except for the times mentioned above lol). One bag is filled with all of our bathing suits and sunblock and any goggles we regularly use, and the other is filled with the kids' beach/pool towels. It takes all the guess work out of whose is whose and eliminates fighting (can I get a hallelujah????).

*extra tip: upon arrival back home from swimming, immediately throw bathing suits and towels into the washer and get them put away asap.   -chlorine ruins bathing suits, so washing it asap helps keep them in good shape.

SHOES!

Required:

Organizers (pictured below) that have open spaces with the option to add drawers

You. GUYS! I found a semi-inexpensive way to FINALLY keep shoes under control! We had shoe racks prior to this shoe system, and they'd always end up on the floor or bunched in piles and I COULD NOT STAND IT ANYMORE! With six kids, the amount of shoes is crazy! We bought this awesome organizer that has 9 cubbies  (I know they have some that are four cubbies and possibly also 6) and then bought the drawers in the colors we wanted. They have a lot of fun colors out there, as well as those cool sequin looking ones that flip from one color to another.

My husband, kids, and I all get our own drawer and we have the middle part open for any of my husband's larger boots or for guests to place their shoes when they visit. They surprisingly fit a lot. Our rule is that their shoes must all go into the cubbies and nothing else can be kept. It has been SO nice to have this piece of furniture welcome people into the house instead of a mountain of shoes haha!

Backpacks, purses, diaper bags, helmets!

Required:

Either a store bought firm coat rack that goes along the wall

OR

Homemade!

I am so impressed with my husband. He took a quality piece of wood, rounded the corners, stained it, and added enough hooks for all my kids and myself and put it on our kitchen wall. All the kids have their own place for their backpacks and helmets, and I have a place for my purse. My youngest is 4 so her spot is now kinda for whatever. Before, we used hers as a spot for the diaper bag but HOORAAAAY for no more diapers! 

Can you tell I didn't tidy up for this picture? Lol just being real. My house is rarely worthy of pictures... But c'est la vie!

Hope these hacks have helped you! Let me know if anyone tries it out an let me know if these ideas have helped you! Also, feel free to share tip down below <3

We will not give up!

You know what I've noticed? A lot of fellow heart mommas, fellow mommas with sick babies... A lot of us tend to have blogs, websites, and outreaches. Why? Is it because we are extra special and need to show off and make ourselves look good by giving or creating? No. That's absolutely not it.

It's because we are hurting. We can't not do anything... When our child is sick, and there's no cookie cutter storyline to go with it... When we don't know what answers will show up every 6 months... When we feel so helpless that there is no easy cure or even a cure at all... We get busy. We need to DO something. And because of the fact that we need to stay functional for our babies, we put our pain into something good.

Monique Rios - a woman who has been my role model since the beginning of my son's life... She has children who have been through things most of us will never ever experience in our lives - yet she has given so much of herself to not only the heart world, but to many sick children and their families. Annual Christmas parties for CHLA and the Ronald McDonald House... You inspire me to no end, Monique.

Tiffany Hernandez - you never cease to amaze me. Every year you put together Brooklyn's Blessings in honor of her daughter, giving gifts to sick children... and at any given moment you are helping someone else. Your giving heart is incredible.

Just two examples of organized events that are put on by mothers suffering the most awful pain - seeing their children hurt.

The advice/experiences that Amy Bennett and Jessica Alleman share... You ladies are also my role models. It's so difficult to be delivering news that is incomprehensible to most, yet here you are. Leading the way for many heart moms to come. The raw and awful reality of what CHD is needs to be heard and understood. I just want to thank you for opening the door to the many people who read your blogs and see what you live.

Joanna Joshua... You are an incredible woman... Fighting against the system for your sweet little girl. You are her voice. I look up to you in all that you do, pushing on and not giving up. Your fight has inspired others to stand beside you and get children the health care that they deserve.

The women listed are just a small handful of so many amazing mothers who chose not to give up, and decided to do good, as hard as it is, for the sake of their kids and many families of sick children...

We will not be defeated. Illness and disease will not rob our souls or our hope. Together, we can use our tragedies to push forward and make a positive difference for those who need it.

3rd surgery complete!!!!!!!!

This was started a few days after we got home from the hospital, but I was unable to finish, till now, due to an array of issues from lack of internet, to sick children, tons of doc appts, and simply no time... now to finish!

Hey everyone! Thank you for your love, support, encouragement, dinners, lunches, gifts... Words can't explain our appreciation and gratitude for each and every one of you.

It was one of the hardest, but most beautiful weeks of our lives. Seeing our son go through the pain and suffering absolutely broke my heart, and I would have traded with him in an instant if it was ever possible.

But, guys, I am so blown away by my little 4 year old boy... he is the epitome of what being brave means. He completely embodied strength and he did what he had to. Through all the tape removal, chest tube removals, IVs and arterial lines removed... Through the cleanings and the medications that tasted absolutely horrible, he allowed all of these things to happen.

Micah's first two surgeries occurred before he was 6 months old. This time, with a fully cognitive child, aware about every single bit of it, my heart endured so much pain, The love of a mother is so painful when it comes to the suffering of her babies... Leading up to this surgery, we told Micah and talked him through what was going to happen. He knew that he was going to be cut open and that he would be asleep during it. When he asked if he would hurt when he woke up, we were completely honest with him.

We felt like it was the best thing, for our family, to fully inform everyone. Our children cried for their brother, Micah cried because he was scared, and my husband and I cried. We knew that this battle was something that we could not escape, and we decided to face it with open arms. We knew that our boy would have to suffer, and we knew it was going to be hard... Micah found me sitting in the kitchen, just moments after I scheduled his surgery, crying... and he put his hand on me and comforted me and told me that he would be ok, with the hugest smile on his face. That, of course, made me cry more, but it gave me strength. This boy, you guys...

Last minute pre-op!

Surgery actually got pulled up a day earlier than scheduled, and we only got a day warning! We scrambled to find sitters and cover our bases, but we made it work. We prayed for God to keep his hand on the entire situation, and that if this was His will to have surgery sooner, that we would trust him. We showed up at 6am on Tues, Nov 29, 2016, and we waited.

Last time, on record, that we show him below 94%!

Auntie Rachael, Micah, mommy

After being in the waiting room for hours, we were told that they had an emergency case that came in, for an infant, so we had to wait a bit longer. Micah's surgery was supposed to be first case, around 7:30am, but we waited until about 1:30pm for him to finally get brought back. Micah hadn't eaten since the night before, but he literally never complained. He played for hours with a car track with my sister, sat with mother in law and father in law for a while, giving hugs and kisses, spent time with my dad, myself, and my husband, played with other toys, and watched kid by kid come through and head off to surgeries of their own (from g-tube surgeries, to clubbed feet repairs, to other surgeries).

Grandma, Grandpa, Daddy, Micah

Playing with Auntie Rach

He saw Santa while we were waiting for surgery!

Micah was given what we call the "goofy" medicine. It relaxed him and made him silly, and eventually sleepy. He had a really great anesthesiologist, named Dr. Sean Gamble, take him back. He made things fun and kept Micah comforted for him. We are SO grateful for him that day.

Just got goofy medicine!

Nice and relaxed

Ready to hand him over...

Once Micah was in, my husband and I met our family and pastor back down in the cafeteria. We ate lunch and talked and joked, every now and then thinking about the reality that our son was currently in the middle of open heart surgery. After a total of about 5 hours, we finally heard that his surgery was complete and that it was a perfect SUCCESS! Thank you, JESUS CHRIST!

His toes are the same color as mine for the first time in his life!

My husband and I were allowed to see him about an hour later, once he was in his room. When I saw him, one of the first things that I noticed was the fact that he had PINK toes! With o2 assistance, Micah was at 98% o2 saturation for the first time in his LIFE!

The next several days, things blurred together a bit... He was weaned off of o2 completely by day 3. He is now able to attain 96% by himself without any assistance! Micah came out with three chest tubes, helping him drain the chest cavity of excess fluid. With the Fontan, this procedure, high fluid build up is one of the number one issues that kiddos tend to face. Thank God that Micah had zero issues with this. Micah was able to have all chest tubes removed on day 4, I think. Seeing those come out was so hard to watch... it was excruciating for my boy... but he did it! Seriously, so so proud of him.

This doll was made specifically for Micah, showing him exactly how many tubes and lines, etc, were in him, so that he knew what was coming out prior to each removal

Sitting for the first time

Getting bandages changed, first time

Eating solid food for the first time

In so much pain every time he had to get up while his chest tubes were still in :(

chest tube bandages cleaned. He was so brave

I took this picture to show how intense things were for my poor boy. This is one of his chest tubes

Time to remove chest tubes!

SO excited to be allowed to have pickles!

NO OXYGEN ASSISTANCE!

He's so pink!

He was visited by a therapy dog!

First time going for a walk

Where his arterial line was

Yay! 95%!

Some of his nurse practitioners

A few of his doctors! Dr. Bar-Cohen wore a tie just for Micah this day

After all the wires and tubes and IVs were pulled out, after he learned to move on his own, gained back some strength, and turned back to his goofy self, it was time for Micah to get discharged from the hospital! My husband and I had to be educated on several things before we were released... As always, we were reminded about not being able to pick Micah up under the arms for the first 8 weeks post op. Micah's sternum was opened up, so his bone needs time to heal safely and properly. He has to be on a low fat diet for the first 6 weeks post op, because this specific heart surgery increases the chance of fluid building up in the chest, and fats create fluid, as well. The third thing we needed to learn about was the medication Warfarin (also known as Coumadin) - I plan on creating another blog specifically on that, so hopefully I actually sit down and find time to do that.

He finally got his lollipop!

Our family is COMPLETE! Thank you, Jesus!

So, we are home, now! As I write this, Micah is already 1 month post op. He is sitting with our family, watching Home Alone II, lazing around on the couch. God is good, my family is together. As we continue to adjust to medications, meet with doctors, and get weekly blood draws to monitor how well coumadin is working in his body, life is becoming more and more normal, once again.

If you read all the way down to here, thank you so much for your time! God bless you in whatever you're going through in your life right now!

***Micah will have another angiogram around the time he's a pre-teen. They will also take a biopsy of his liver, to see how the new blood flow in his heart is affecting it. If he is going into liver failure, which is a big possibility, then he will be put on medications to counteract that. If that doesn't work, then it will be time to look into a heart transplant. All in God's hands!