Results from Micah's Heart Cath from last week

On Oct 9, Micah had a heart catherization  (angiogram) because his o2 level has dropped to a new low. He used to be around 81-83% oxygen,  but lately he has been hovering around 78% regularly.

The purpose of this procedure was to search around for a cause. They were not able to find anything, though. There wasn't anything blocking blood flow or any extra blood vessels carrying blood away from his lungs. In fact, there was actually an extra vessel carrying blood TO his lungs, which is doing nothing but helping.

The doctor said that the function on the left side of his heart (reminder: Micah's right heart does not function. He relies solely on his left side) is excellent. The pressures are fine and nothing that they could find is causing his o2 to drop. Micah will require a third open heart surgery, as we have known, and this lower o2 is just showing readiness for the operation. He won't be able to have it for a while, however, because he needs to be big enough. The doctors want him to be 30 pounds or so, and he is teetering between 24.5 and 25lbs.

I just got a call this morning from his main cardiologist, and he had a conference this past Friday with the cardiologist who performed the cath. They discussed the medications he is taking and decided that they want to completely take him off of one of them.  They said that it isn't having any effect on his o2 (it is supposed to be helping him use his available o2 more efficiently). They raised it from 3.7ml twice a day to 5.5ml three times a day before his angiogram, and it didn't change his o2 at all.

We are going to step him down and he will be completely off of it in 2 weeks. I'm nervous... next month will make two years of him being on it. I'm praying that it goes well and he is ok without it. He will continue to have his other medication twice a day, though. This is good news, though. Lesser medicine is always better than more, right?

As for the actual procedure,  it was a breeze.  We got there with no traffic (that's amazing when you're driving to Hollywood), and we checked in and got him processed without issues. They had me give him some medicine to relax him, and he was so loopy and relaxed, it was hilarious.  He told my husband that he had two eyes (reminded me of David After Dentist on youtube). At one point he was licking my tablet and putting his nose up against it lol he was super sweet and funny.

My husband and I were able to walk into the Cath lab and stayed with him until he was put under. He was in there for about 2 hours. One of my best friends stayed with our 6 month old in the waiting room, so we sat with her after she and I grabbed some breakfast.  The baby was extremely well behaved and the time flew by. Before we knew it, the doctor was walking in and we were hearing all this good news :)

While we were there, we got to meet a friend I made through a heart group I'm a part of who has an amazing heart journey of her own. She is 27 years old and has survived a plethora of open heart surgeries and operations. She has all three of the defects that Micah has, plus some others including her heart being on the right side of her body, upside down, and flipped! She is a true inspiration.  If I wasn't so wrapped up in what was going on with Micah at the time, I probably would have been completely overwhelmed by meeting her.  What a hero my son has to look up to! She met Micah before the end of the day.

When we got called back, Micah was a bit groggy at first, but he came out of the anesthesia well. They did an echo cardiogram to make sure that everything was fine post cath. Everything looked great and Micah cooperated with the tech.  We were able to load up into the car within 7 hours of getting there, I believe, and we got home with NO traffic. Again, that is amazing when you're leaving LA on a weekday at 230 in the afternoon.  God seriously had his hand on everything.  He is so good to us!

There is so much hope for our boy! Thank you to everyone who looked out and prayed for us. Micah has a bright future :)

Schedule Regular Meetings... With Your Spouse

I am regularly asked "how do you do it" ("It" being raising these kids, successfuly). I'm not going to lie even for a second and take all of the credit.  A big reason for being able to even remotely "do it" is because I have an amazing husband who is an outstanding father.  Seriously.  My husband loves these kids with everything that he has, and is so supportive to me and all that I come with. I'm blessed and so fortunate to have him when I am not doing such a stand up job with parenting or I'm having a bad moment, day, week...  or longer.

Something useful I can offer up, however, can apply to anyone. Whether you're in the same situation I am, or you're single, or you're somewhere in between.

Now, this entry is is about scheduling meetings with your spouse,  but if you don't have one, then I recommend putting time aside for your best friend or parent or sibling - basically, someone who you're willing to be brutally honest with and open to hearing some constructive criticism from. Make sure it is someone who really knows you and sees how you parent.  But for this example, I will use a husband and wife situation.

My husband and I like to go over our parenting.  How are we succeeding, currently,  and how are we failing?  Are we being too lenient in specific circumstances? Are we being too hard on the kids? Is one acting out and are we handling it the right way? Basically, are we doing the right things?

Examples :

"Honey,  I've noticed that Leah is really seeking attention lately. She is constantly announcing that she just cleaned something and that she is behaving well. Are we not showing her enough attention?  How can we make her feel loved?"

   Or

"Jake really seems to be getting frustrated lately very easily. We need to find out what is going on under the surface.  Is he having trouble at school?  With homework?  Or do you think he feels unheard, here?"

   Also

"Someone just told me that they were impressed with how loving our kids are with each other and how respectful they are. It looks like, when all is said and done, that we must be doing something right."

We will go over each child and gauge each situation.  We have 6 kids, so we have a lot of moving parts. It is really easy to slip out of good grooves when our situations change (our 5th just had a heart procedure a few days ago, for example,  and the stress that came with that clearly changed how each of us was parenting and how the children were behaving).

Having a family is not scientific,  but it is unique and unpredictable.  When you evaluate your parenting,  you open up the door to change. We are unable to always perform the way we want,  and these little meetings really give us the tools to tweak our flaws and get back on track.

I highly recommend deeply looking into your parenting and looking ahead to what kind of effects your parenting will have in the future. We have the responsibility and owe it to our kids to raise them the very best that we can. It's our duty to sharpen our tools as much as we can so that they have the most potential for successful lives as adults.

So grab a pen and schedule a time in your calendar.  And do it frequently. You will be grateful that you do.

Here we go again...

Micah is now 28 months. Actually, as of today he is 28 months! I know...  crazy mom who is still counting months once they pass 2 years....

Tomorrow, October 9th, he will be having an exploratory angiogram (heart catherization) to figure out what is going on inside his heart and what is causing him to have even lower o2 than his normal.

Quick recap: Micah has three heart defects - hypoplastic right heart syndrome (hrhs),  tricuspid atresia, and pulmonary stenosis  (didn't even KNOW that the third defect existed until I read his after visit summary a few months ago after his biannual cardiologist visit). Basically,  half of his heart is functioning and is "all there." Hrhs basically means that his right ventricle,  which carries the blood to his lungs, is not there. He has a tiny little nub of his right ventricle that does not function at all.

Due to these defects, his oxygen level is not 100% like ours, but was hovering around 83% or so on average. In recent months, since about February  (so for about 8 months) I've noticed my son getting out of breath a lot faster and his lips started getting darker, or "blue"(It looks like he has just had a sucker or popsicle all the time), which is showing lower o2.

Back in Feb, he would be out or breath by the time he got to the top of our stairs. Now, he is panting by the time he is to the 4th stair.... he gets out of breath by simply walking (or toddler-running) from one end of the room to the other. It has been breaking my heart....

Anyway, during his cardiologist visit in July,  it was discovered that his new average o2 is around 78% :'( I bought a portable pulse ox and he has actually gone as low as 70% at times.  Again... it is absolutely breaking my heart.

Because of his even lower o2, Micah was referred from his primary cardiologist to his cardiologist who works in tandem with his surgeon. His other card opted for increasing one of Micah's medications (he is on two medications,  one for blood pressure and one for lung pressure) to maximize efficiency in the exploratory cath that they will be doing.

The doctors don't know if they're going to find a blockage, which they will balloon open, or an extra blood vessel, which they'll be closing off. They may find nothing, they may find something that will result in an additional open heart surgery to fix. We simply don't know and will not have answers until tomorrow.

So this is it. This is what we are facing, currently. I'm not going to lie one bit... it has been extremely hard. It doesn't matter that he has had two open hearts or an angiogram before... it has been almost 2 years since he has had any procedure done! This little boy has my heart and is such a big part of my life... I just want him to be safe.

If you're reading this, please pray for my son's safety, and that the angiogram gives us answers and solutions.  Thank you.