Heart Mama Blog

CHD Awareness Week: Tidbits from a veteran Heart Mom

2012-02-09T00:06:00.003-06:00

Through the course of this whole heart journey with Logan I have always had other mothers who allowed me to lean on them, ask questions or even just share a snack in the waiting room. We would share our stories, usually the bad stuff first, and then we would smile hopefully and spread the new positive happenings with regards to our kids in the CVICU. I love the relationships I formed in the hospital - parents were too worn out and fearful to put on airs and shared raw and honestly together. You bond quickly and remember each other always. There are a few things that I wasn't prepared for in the CHD world - and as a veteran mom who is always meeting new heart parents, I want to write them down.

1.) Even if you've never met a family in person, you can love their kids. I follow a little boy named Owen (Simmons Family) through the blogosphere and you'd think I knew him. I love this kid and I stress over his appointments and I have no explanation for it. I'm attached to so many families who have no clue that I read along and pray daily for them.

2.) If you are in the CHD world for any length of time, you'll know a child who loses their battle with CHD. I am a realist and know that it is going to happen, but it still hurts me to my core. I've spent many nights crawling into bed with Logan just crying and holding on to him for dear life.

3.) Being a parent of a CHD child will either make or break your faith and the same goes for your marriage. It will also scare friends away, change your entire perspective on life and broaden your mind. Empathy is a powerful thing.

4.) Advocate parents can be powerful, but they can also be toxic. We tend to force the heart mom/dad bond and pretend to support each other only to have petty issues and egos ruin everything. You might like these people, or even want to be friends with them, but you should just save yourself the trouble & surround yourself with positive people who have good intentions.

5.) It only takes one person to make a difference. Your child will touch (and change) so many more lives than you will ever know.

CHD Awareness Week!

2012-02-08T02:47:00.003-06:00

February 7th-14th is Congenital Heart Defect Awareness Week! 1 in every 100 children born will have some type of CHD. They range from simple to complex, but all are equally scary.

Logan was born with Hypoplastic Left Heart Syndrome (HLHS), which basically means that the left side of his heart was severely underdeveloped. The "standard" protocol for his defect is a set of 3 surgeries called the Norwood, the Glenn and the Fontan. Logan completed 2, but went into heart failure before the Fontan could take place.

This journey has been difficult, but Logan is well worth any and all sacrifices made.

Logan @ 1 day old

Logan - Glenn Recovery (4 months old)

Logan - Post transplant (18 months old)

Smiling and happy @ 3 years old

Logan being an airplane (3 years)

Happy Heart Month!

2012-02-04T23:14:00.001-06:00

Just a few pictures of Logan taken this week to kick off my blogging again for heart month:

Walking in a Winter Wonderland

2011-12-17T03:51:00.004-06:00

I have always loved the Christmas lights at Rhema Bible Church, so I was thrilled that Logan was interested when we entered the display. It was cold, but just like a kid, he only felt joy and wonder as he went through the lights over and over. I love seeing Christmas through the eyes of my child - we even accidently happened upon a marriage proposal. Logan didn't understand, but it was cute seeing the young couple so excited. The "Remember how naive we were!?" conversation that followed was hilarious. Enjoy it kids, because soon you'll have a wild toddler who really dislikes mom's camera:

He will yell at the cold geese in the pond....

and he will LOVE the choo-choo!

until he remembers the geese......

and then the train.......

See the pattern? We don't call him "Squirrel" for nothing. :)

My New Venture....

2011-07-27T22:41:00.000-05:00

In the past 6 months I have transitioned my home towards using products that are safe, natural and more effective than any name brand available at the local grocery stores. If you have been trying to eliminate harsh chemicals and would be interested in learning more about products that are safer for your family, just let me know! Email me at amynschroeder@gmail.com

2.5 Years

2011-06-17T01:58:00.003-05:00

Logan,

At 2.5 years old, you are a trip. People tell me you are funny, good natured, totally spoiled and too many other awesome adjectives that I don't have space to include. One thing I know for certain - that your purpose in this life is extraordinary! Kids aren't supposed to be "normal" after everything you have been through. While I know you possess no amount of "normal" to thanks to your genetics (hahaha!), You're just so shockingly EASY.

You are mostly caught up with milestones for your age (but really, who needs to eat from utensils anyhow?!) and only show fear at the hospital. Even if you are just at the chiropractor with your Mimi you realize a doctor is present and are immediately concerned for her. 2.5 year olds aren't supposed to have compassion and I am convinced Chloe must have been kind. I am struck by your goodness. It goes without saying that you will have a distinct advantage as you grow older - a smelly ol' boy with the heart of an angel. It might sound funny and ugly people might tease you for it later, but it is a gift. Faith, Hope, Strength, Love - all the good stuff lies within.

I cannot wait to watch you grow up into an amazing man.

I love you as big as the sky,

Mama

Showing Off

2011-06-14T21:17:00.002-05:00

I have known that Logan's life would greatly impact my world, but I never realized just how much he would change me as a person. I never thought I would get a tattoo, but I love it and it is my tangible way of representing to myself that I am a damn good mama and that I survived a really awful (yet beautifully eye opening) and traumatic experience.

Moments Like This

2011-06-13T01:22:00.002-05:00

Last year at this time we all longed for a "normal" summer full of backyard fun, playgroups and family. This year we are enjoying our precious moments and answered prayers.

God is so GOOD.

Organ Donor/Recipient Families Meet!

2011-04-13T03:15:00.012-05:00

The transplant parent has a wide assortment of emotions. I'm thankful that Logan received a heart from a sweet angel, but it doesn't stop me from questioning God. Lord, why didn't this family receive the miracle that I know they prayed for? Why did Logan's life get to continue and not Chloe's? I won't get answers this side of heaven, but I still ask them.

Allow me to introduce you to Chloe. Isn't she beautiful? Why, Lord?

On April 9th we headed south to the great state of Texas to meet Chloe's family at Cook's Children's Hospital in Ft. Worth. The hospital dedicated a plaque to the donors from the last year(?) in their rememberance garden and decided to invite recipient families to participate as well. LifeGift is the organization who facilitated the transplant and they also put this event together - Neal, please pat yourself on the back as well as all the wonderful women I met who work with you. You all do fantastic things that truly make a difference in this world. The compassion and dedication I witnessed that day from y'all? Amazing and inspiring.

It was an emotional day to say the least (The slideshow made an entire room cry!), but I regret nothing. I loved meeting Chloe's family. I know the day was so so difficult for them, but they embraced us and loved on Logan as if their hearts weren't breaking. I truly love these people and the courage they displayed to actually meet us only 7 short months after losing someone so precious to them. I hope to see them again soon.

A few pictures from the day: (Request me on FB for more if you aren't on there already)
The plaque:

Logan and Chloe's mama reading:

All the recipients at the ceremony:

These two ladies are nurses at Cook's who took care of Chloe in the ICU. (Thanks for coming, will you send me your emails?)

Chloe's mama listening to her heart beating in Logan's chest. What a moment!!!

Remembering Chloe

2011-03-29T14:53:00.003-05:00

March 27th is Chloe's (Logan's angel heart donor) birthday. We launched 2 pink balloons for her birthdays on earth and one purple balloon for her 1st birthday in Heaven. We know she had a fantastic day playing with Jesus and all the other children taken from this world too soon. Logan launched the purple balloon to heaven and watched it the whole way.

Our Donor Family

2011-03-16T01:19:00.005-05:00

I think I have already said that Logan's heart came from a little girl, right? Not just any little girl, however, a beautiful little child who looks as if she could be mine. In fact, she looks more like me than Logan does! Since the first time I saw her face I have loved this child, have prayed for her family and have had the desire to hug them and to know the story of their lives. As a mother, I needed the connection to this family whose gift saved Logan's life, and therefore my life as well.

I'm so excited to announce that we will be meeting members of our donor's family in April! I am still unsure what details we are willing to share (out of respect for their family), but I hope to tell you more of this little girl's story when the time is right and I have their blessing. I had the extreme delight to chat via e-mail with her grandmother this past Saturday. I didn't know what to expect or if the family would even want to communicate with us, but she is fantastic. I truly cannot wait to meet her and try to express not only our thankfulness, but also our sympathies.

Logan also cannot wait to meet his Grandma T.

What a big boy~

There's snow place like home?

2011-02-09T20:01:00.003-06:00

Curious what we've been up to this week?

Not much of anything!

Try getting 27 inches of snow! Owasso, OK was hit pretty hard by old man winter and it happened as we were in Houston. We were trapped in the cold state of Texas for almost a week before getting home just in time for MORE snow! The schools and cities have been shut down and the grocery stores are bare. Logan would like to make a " 'No Man " but he hates the fluffy cold stuff.

The plans for Tonight - Snow ice cream!

6 Month Checkup/Biopsy

2011-02-03T01:24:00.002-06:00

We've been in Houston for a few days because Logan was scheduled for his 6 month post-transplant biopsy on Monday. This visit was probably more eventful than I care for, but I didn't want to post and scare everyone for what would hopefully turn into nothing. Here's what happened:

Sometime in the middle of Sunday night there was an emergency of some type with another child and the cath lab along with our doctors were busy. They were finishing up when we arrived at the hospital. The transplant team was scrambling to find someone to do the biopsy at 5am since we drove so far and only do these once per month. Eventually a doctor agreed to do it and everything went like planned.

*At 9am Logan was taken back to the OR.

*At 10:15 I was called and told that they were done and to sit in the consult room so this doctor could tell me how it went.

*At 11:30, and imagining every awful possibility,I finally went to the front desk and asked what was going on. Nobody knew, so they sent me back to the room and went to investigate.

*At 11:45 the doctor came in and told us that he took a bigger bite than intended out of Logan's heart (Ummm, ooops?!) and he would need further monitoring to make sure no bleeding was happening but ohmygosh did you hear that Oklahoma is getting snow!? Yes, it was really said like that. After a few more questions...(Ummm, is he going to be ok? Don't you realize that this is his NEW HEART and we'd really like for you not to injure it?!?!)...we went up to recovery.

*We were able to see Logan at noon and he was still sleeping. Ehcocardiogram was ordered for noon. I made a frantic call to our Transplant Coordinator. She told me not to worry until we know we've got a problem. Stats are stable, no emergency chest openings were being done and we just wait.

*At around 1pm Logan had an echo and waited for it to be read by the radiologist.

*In the meantime we witness one family lose their child and our friends (The Lopezs') tell me they are being mediflighted to Houston with a potentially devestating issue.

*Mom and I agree that we will be making use of the hotel bar tonight.

*Waiting, waiting, waiting, waiting

*At 5pm we find out that the echo was clear and no damage was done. The doctor who did the biopsy shook my hand and said he'd see me next time. (Ummm, no you won't! One strike and you're out when caring for Logan!)

*Shortly after that we find out that the rejection score was 1R (great!) and we were released! YAY!

*Hotel bar's margaritas weren't strong enough and the 8 dollar chocolate cake thing I ordered was just a ding dong snack cake minus the cream filling. Everyone knows that the cream filling is the best part.

*zzzzzzzzzzzzzzzzzzzzzzzzzzzz........

Maybe one trip can be uneventful? Geeeez......

Logan at 24ish Months

2011-01-10T03:17:00.003-06:00

Have y'all heard? Someone is 2!

We had some yummy cake decorated with his favorite thing in the world, Cars!

Logan opened lots of goodies with Mimi and Nana as his assistants:

but the adults enjoyed some of them more than he did.......

Logan is turning into the most hilarious, cute, energetic (and spoiled!) child! He is slowly entering the terrible twos, but its not too bad. How can I be angry with this face?

Truth and Consequences

2011-01-05T03:11:00.002-06:00

I remember thinking how wonderful life would be when Logan and I finally got back to Oklahoma. We would play with family, go to the park and life would settle back into the routine that had once been a comfort. The truth is that life will never go back to what it was before we moved to Houston in May 2010. Seth and I saw things that will never leave us, we dealt with situations that altered our very souls and the time apart did not make our marriage stronger.
We are very thankful for Logan's treatment in Houston and praise God every day for our miracle, please don't misunderstand. The love we both have for him is unconditional and it grows exponentially every day!

Here is the picture of us right now: two broken people who are spiritually, emotionally and physically exhausted from years of stress who can't look at each other without reliving horrifying moments. I've seen true fear and anguish in Seth's eyes. We both have nightmares that keep us awake. We are truly struggling right now as individuals. How do you go back to normal when you are a different person?

What is our path from here? I can't answer that right now, but I have always been 100% transparent for the heart families who read my blog. This is what you need to expect - marriage with any child is difficult. Add in special needs and life threatening disorders and you are on a fast road to becoming a statistic. This is coming from two people who have been together for 12 years and made it through some pretty serious stuff. This changes you as a person and sometimes the two different people just can't heal together.

A (very eventful) Update

2010-12-01T11:11:00.006-06:00

We're Home!!! We made the 9 hour trip home on November 19th - just in time to spend a fantastic Thanksgiving with the Tulsa family. Logan has been the happiest child you have ever known!

I, on the other hand, was able to enjoy 24 hours of home before my gallbladder had me doubled over in excrutiating pain. One trip to the ER, one procedure to retrieve a stone that escaped my gallbladder and one surgery to remove said gallbladder later - I'm getting back to normal! The whole family has been pitching in to cover me, cook meals and play with Logan for 2 weeks, so a big thank you goes to them! I am hoping to be 100% shortly.

Logan's Welcome Home party is this Saturday! Everyone is invited, so email me at amynschroeder@gmail.com if you need the details. You have to be sniffle, cough and fever free!

***Someone is turning 2 in just a few short weeks and Christmas is shortly thereafter. Here are a few pictures we took last weekend for Christmas cards:

My sister Tiffany and brother Steve:

My Parents:

The Star:

My side of the family:

Seth, Logan and Amy:

All the blue eyes:

3 Month Biopsy

2010-11-18T15:57:00.002-06:00

Logan had his 3 month biopsy yesterday and the results were great! We have officially been released back to Oklahoma! Woohoo!!!

We have to be back in one month for a clinic visit, but at least we get to live at home in the meantime.

Bammel Church of Christ

2010-11-17T05:02:00.003-06:00

The apartments we have lived in both times we have been in Houston are rented by a local Houston church, Bammel Church of Christ, and sublet to patients of the local hospitals for a substantially lower rate than you'd find in a hotel. M.D. Anderson Cancer Center is also nearby, so usually these apartments are occupied by very sick people from all of the country who are undergoing surgeries, chemo and various other painful procedures. The apartments are 100% furnished - all we had to bring was our clothing and personal items, laptops and Logan's toys.

To say that this ministry has blessed my family would be an understatement. Not only have many of the members taken a personal interest in us, but they bring cookies, call to check in and send encouraging cards on a weekly basis. Some even came to the hospital and sat with us during Logan's critical few weeks before his angel heart arrived. What a phenomenal group.

So, of course we wanted to take Logan to their small group bible study to thank them personally and to show off our miracle boy.

A few shots of the group:

Miss Jackie brought Logan a heart bear and beanie babies:

Logan loves them!

Miss Doris bought him a musical turtle, but we opened it at home because she said it was loud. It really isn't loud and he LOVES the turtle!

Thanks Bammel Church of Christ! You have inspired this family more than you will ever know!

Fundraiser for Logan

2010-11-06T14:07:00.002-05:00

Village Inn contacted our family and is letting us sell pie gift cards for $10.00 this holiday season. We will get to keep a percentage of that amount to pay for Logan's medical bills. If you are interested in buying a card, let me know and I will give you the details.

We will be setting up a booth after Thanksgiving in a few Village Inn stores and we get to sell the coupons to the customers as well.

Thank you Village Inn!

The Prayers of a Transplant Mom

2010-11-05T03:39:00.002-05:00

I know that another child had to die for my son to live.

However, I have never once prayed for another child to die. Ever. What I did pray for was a family to be generous in their time of tragedy. I am grateful to our donor family; they are the reason I get to play with Logan every day. The road to transplant wasn't sunshine and roses, it was our only option. I'm close with a few other transplant families and they have prayed for the exact thing. Never for death, only generosity if and when tragedy occurs.

Everything else is left for God.

I'll admit that I still ask Him why Logan is alive and why his cousin Ben isn't. I know I didn't do anything different than his mama. I think I can speak for a lot of transplant parents when I say that we always weep for the children who don't receive their miracle in time. One thing I do know is every person, no matter how long they live, is here to serve a purpose. I've witnessed lives changing through Logan. (Especially my own!)

The "Circ" Issue

2010-11-03T22:20:00.003-05:00

A post towards a question I've been asked:

No, Logan is not circumsized. We asked if it could be done and the staff at Texas Children's declined an unnecessary procedure on an already sick child. The surgeon agreed, the doctors agreed - so he will probably never have the procedure. We really wanted it done, but if the doctors at the 3rd best place in this nation for Logan's heart defect say he is too sick (and this kid was healthy compared to a "normal" HLHS baby!), then he was too sick.

Do I think other heart parents should circ? I think it depends on their doctors and the risks they are willing to take. (Bleeding and infection risks were told to me when I asked.) To be honest, I've never seen it work out well, but I don't ask about circ issues either.

I also hold the opinion that parents should take their children to the best place possible for them though and a lot of people disagree with me on that. Why trust doctors at a "normal" hospital when there are specialized centers for CHDs? There is a certain responsibility you have when making medical decisions for your child - which includes researching doctors, survival rates, etc.
One thing I've learned is that major centers have resources that will help you stay with your child if home is too far away. (as does the government)

Village Inn

2010-11-03T22:00:00.003-05:00

Did I ever mention that the Village Inns of Tulsa were a very HUGE part of helping us live in Houston? My Aunt knows a few managers and was allowed to place collection jugs on the cashier counter to collect loose change from diners. As it turns out, the regulars became quite attached to Logan and always ask how he's doing. I think a few might even follow this blog from time to time. I want to give a big ol' thank you to Village Inn of Tusa - you guys are so appreciated!

The collection jugs were taken down at the beginning of September after one was taken outside, the money emptied out, and then left for employees to retrieve. Can you believe that? The jugs had to be removed because there was a huge danger posed to an establishment if someone was willing to steal a sick kid's bucket of change. What else would these thieves do for extra pocket change? I'm still flabbergasted that someone really did that. (Can ya'll imagine answering for THAT at the pearly gates?!) No thanks! LOL

Anyhow, if you know a Village Inn staff member, tell them Hi for the Schroeders and how fantastic Logan is doing!

Faster Than a Speeding Bullet.....

2010-10-31T19:18:00.003-05:00

more powerful than a locomotive......

and able to leap tall buildings in a single bound........

which is easy compared to multiple open heart surgeries.......

life support, a mechanical heart and a transplant.....

Super Logan!!!!!!!

9 weeks out!

2010-10-28T13:47:00.002-05:00

Yep, we are 9 weeks post transplant and Logan is feeling fantastic! His biopsy yesterday showed no rejection. Praising God!! We will officially be released on November 17th as long as his final biopsy comes back acceptable. It's been real, Houston, but you won't even get a hug when my car is speeding towards the Oklahoma state line on the 18th! (Actually, I might wait for the weekend to drive home, but y'all understand!)

We are looking forward to this weekend because my parents (Nana & PopPop) will be flying down to watch Logan trick or treat. If you are in the Houston metro and would like to see Logan as Superman, just let me know. We will not be going door to door in the neighborhoods, but Logan does make housecalls for candy and attention. Ha ha ha

S0 much to reflect on about these last 6 months, but that will be reserved for when I get to my home, my bed, my stompin' ground - OOOOOklahoma!

Flashing Back

2010-10-18T12:21:00.002-05:00

I always thought that the characters on tv who would replay their horrific moments over and over in their heads were just being ridiculous. That is, until I went through Logan's "acute decompensation" and the weeks following that awful day. Now I know that those moments you wish would fall out of your head will haunt you forever. I'll always remember how he looked when he said "mama" as his eyes rolled back into his head as they wheeled him off to the OR. I will never forget the fear in Seth's eyes, and then in my mother's eyes when she arrived. I can't forget that Logan was in unbearable pain from 9pm to 7am the next morning as his heart failed him and his organs began spasming from lack of blood.

I'm the strong one, so I very seldom let my fears slip out, but they were there......and now they appear to haunt my dreams and sometimes my conscious thoughts.

So blessed and happy to tell my boy Happy 22 months. Only a few more months until we shower him with more toys than my house can hold and celebrate his, and my, birthday. I never truly lived until my precious boy was born.

I'm going to be updating my blog links either today or tomorrow, so don't pay any attention to a few blips :)