Blogging Break

Taking a break from blogging, duration unknown...

Blog Schmog . . . Mama's in a Fog

Haven't blogged much lately. Life has been challenging and there are lots of things up in the air. Decisions need to be made, yet I'm nowhere near being in the right frame of mind to make important decisions. But alas, I have to. And it sucks. But it is what it is. So maybe that explains a bit why you haven't seen much from me here on the blog. Hopefully that will improve eventually, but for now, I'm working through some stuff.

For now, I'm gonna share some recent pics of the kids. Can't go wrong with that.

Inspiration

I am in desperate need of some inspiration.

I need some bright, shiny, happy quotes that encourage a person to hold on and forge through dark, difficult times.

Can anyone share some positive, uplifting thoughts/quotes with me?

An ENT Update

Chase had a visit with an ENT yesterday. Long story short, his Speech Therapist suggested we take Chase in for a tympanometry test to check to see if he has fluid in his middle ear. Apparently this kind of fluid can make a child feel like they're underwater and makes it difficult for them to repeat consonant sounds like B, P, M, etc. Since he hasn't been making much progress with ST, it made sense to have him tested for this. We attempted to have his primary pediatrician's office perform the test, but, honestly, they just suck. We're going to be looking for a new pediatrician this summer because we've HAD IT with the crappy care we've experienced at our current office (remember the "wait 'til he has a 105 rectal temp before going to the ER" advice their nurse gave us?). Anyway. They couldn't perform the test well so they referred us to an ENT.

Yesterday we met with an audiologist who performed Chase's typanogram. She was super-sweet and did an awesome job. The test did show Chase has some fluid in his right ear. I wasn't surprised. I occasionally see him grab or pull at his right ear, but not often enough or accompanied by other symptoms to make me think he had an ear infection. After the typanometry test, Chase and I sat in a sound-proof booth while the audiologist played sounds to our left and right. Chase responded (in my opinion) VERY well to the sounds! The audiologist mentioned he did a great job, but that even kids who are deaf in one ear would respond the same way. She noted she had NO WORRIES that he was having any substantial hearing difficulties in either ear, and I haven't thought so, either, so it was good to confirm this.

We then met with the doctor who took a look in both of his ears and confirmed some fluid in his right middle ear. He confirmed there were no signs of infection and sent us home with a prescription for Pediapred (Prednisolone) to help get rid of the fluid, and said to come back in 2 weeks to recheck him. I'm very hopeful that the fluid can be eliminated with a simple prescription! I was already fearing having to head to Charleston to have tubes put in. Hopefully it won't come to that!

Happy Mother's Day!

Happy Mother's Day to all of my mom friends, especially all of you heart mamas out there!

Here's a quick recap since Friday...

We had Chase's cardiology appointment Friday morning and I'm ECSTATIC to say he did AMAZING!!! He wasn't a big fan of getting his bp's or o2, which is so very typical. However, he was a STUD-MUFFIN when it came to his echo, which was the more important part of the process! He laid still and watched "Curious George" on his iPod while mommy held his hands and daddy kept his legs still. We didn't have to hold him down per se, but just sort of prevent him from getting up or fighting us. He didn't fight at all! He was amazing for all of the 15-20 minutes they needed for his echo. Then we went back to the exam room and waited on the doctor. He was completely pleased with Chase's echos, bp's, sats and pulses. He kept us on the same meds (Enalapril for bp and 1/2 baby aspirin) and said, "See ya in 6 months!!!" That's exactly what I was hoping to hear! This will be the longest time we've gone between cardiology appointments! What a blessing!

Friday was also my birthday, so Chase's cardiology news was the Best. Present. Ever!!! Hubs then took me out to dinner at Ruth's Chris Steakhouse, and we enjoyed the BEST dinner of my life! It was amazing.

I enjoyed some yummy pancakes and strawberries for breakfast this morning, compliments of hubs. I also opened my Mother's Day gift from LO that she made at school. It was a beautiful 11x17 laminated collage of pictures of her throughout her first school year. I just love it so much!!! See?

After I opened LO's gift, it was off to church! Then after church we went to the park with my family and the kids had a great time! Here are some pics that highlight the fun! Enjoy!

LO was happy to run freeeeeeeee!!

I'm not sure she was "posing" for this... I'm pretty sure this was just her sporting some attitude.

Love this pic of the kids -- LO's face cracks me up!

One tough little dude!

Happy, happy boy!!! :)

Just love this boy to pieces!!!

Bring out the bubbles, and this guy brings out the smiles!

Just another crazy face of LO...

Somebody got to try her hand at baseball with her cousins... She had a blast! Notice she's gone lefty on us?

Taking a water break.

Prayers for Cardiology Appointment

Chase has his cardiology appointment on Friday morning. I always get a pit in my stomach in the days leading up to these appointments, afraid of them finding something unexpected. It's been 3 months since his last visit, but only about 5 weeks since his last echo (during the heart cath).

Of course I'm nervous about getting him to cooperate as well. Can't blame him. How many 18 month olds so YOU know who will sit still for 4 blood pressures, an o2 sat check AND an echo? Seriously. He surprised us last time by doing so great... I'm afraid it was a fluke and he's gonna FLIP. OUT. this time. But I'm also hoping that since Friday is my birthday, he will cooperate (at least somewhat) as his gift to me! LOL! Guess we'll find out soon enough!

Please keep us and Chase specifically in your prayers, especially Friday morning. I'm praying I'll hear the doc say, "See ya in SIX months!" 'cause that'll mean everything looks great!!!

One last thing... I wanted to share this great poem I found on a fellow heart mom's blog earlier tonight. It sure does express how I feel! Just imagine it says, "he/him" instead of "she/her..."

I tucked her into bed tonight
(And adjusted her pillow and blankie)
It's been a long exhausting day
(And she sure has been cranky)

She threw every toy from her toy box
And she tossed all her lunch on the floor
She begged me to go out to play
(She just wouldn't let go of the door)

Most people cannot comprehend
The things she has been through
They tell me... "I just can't imagine..."
"How you do all the things that you do."

I sigh... just because they don't realize
How could they ever know?
Just what a precious gift it is
To watch my child grow.

I still remember clearly
Our days in ICU
Hoping, praying, wondering
What were you going through?

Stroking your hand...feeling helpless
Whispering words in your ear
"It's alright my baby"
"Mommy is right here".

Helpless...scared...bewildered
Wanting to just see you smile
Thinking..."I"m not strong enough"
To make it through this trial.

Knowing that... not all children
Survive these surgeries
Day by day...with patience
Constantly praying...for peace.

And so...that is the "secret"
To doing the things...I must do
There is no perfect...inner strength
I guess God brought us through.

And so...when I see... footprints
All over my freshly mopped floor
Or gooey dried bananas
Smudged on the living room door

I wipe it off...with just a smile
Just praying for more to appear
These are my reminders
I'm blessed to have her here.

I tucked her into bed tonight
And as I walked away
I looked up for a moment...and said
"Thank you...for "today".

~Stephanie Husted

From a Daddy's Eyes: Part II

Continued from Friday's Part I post...

Although this may seem like a rosy picture, it was far from that, and where the saying "living minute by minute" comes from. HLHS kids walk a fine line since there is SO much going on and changing in their little bodies and obviously, we are all human, and humans are trying to fix something we did not make. We are still learning the limitations to and how our bodies adjust to the many procedures required to reconstruct a child’s core anatomy as a result of HLHS. I mention this because we did experience a situation where our son was given CPR one week after his first open-heart surgery after what was referred to as a routine, uncomplicated procedure. I won’t go into details, but some simple things were overlooked and our son suddenly arrested, causing chest compressions to be required to safe his life. No one is real certain what caused our son to react the way he did, which for me only heightened my intensity. Luckily, it did work out, but was not a fun lesson to learn.

After being in the hospital environment for 6 weeks, we were finally headed home as a complete family. For me, I think my anxiety and focus intensified even more at this point. I was blessed to be a part of our son being born and to support him as much as I could through one of the most complicated stages of the HLHS reconstructive process. But now, we are home and I think for me there was a feeling of vulnerability, A LOT of fear and as the days and months went by a feeling of being on a deserted island with no real involvement with the outside world in either direction like we had a contagious life-threatening disease. I don’t think the isolation had as big of a direct impact on me as it did my wife, which ultimately bled over to me, to which I felt a deep sadness and some guilt; however, I felt it was my mission to lead our family through the war zone which included maneuvering through mine fields as we visited the required medical facilities for follow-ups, work, and keeping a safe germ-free zone from others since it was cold/flu/RSV season as well. I can’t say in the past I ever paid much attention to others’ hygiene, current state of health, how germs are and can be spread, etc… In short, I am now an obsessive compulsive hand sanitizer and/or hand washer. Especially when our son was little and I carried him a lot, I would not shake people’s hand during the flu/cold/RSV season. I have no idea where people have been, especially their hands, so to eliminate the risk altogether, I would just avoid the process and apologize later. This caused a lot of stress and anxiety for myself and those around me, mostly my wife. But, for kids with HLHS, catching just the common cold can be life-threatening since what we learned while at the hospital during his first surgery and have since continued to learn more about to this day, the respiratory system plays a huge part of the cardiovascular system, and if issues impede how this system works, it can have a detrimental impact to the heart and supporting arteries and veins. In reflection, I think the time between our son’s first surgery and a short time after his second surgery was as much or at times even more stressful then being at the hospital during a surgery.

After our son’s second surgery, maybe a couple of months, life was attempting to get back to normal, but I think I was fighting it. I still wanted to protect our son from any outside influence that could jeopardize his health. Of course, what is it the flight attendants say before when they demonstrate the safety features of the plane you are on? If we experience a decompression, masks will drop from the ceiling... please put one on yourself before you attempt to take care of your child. Guess that would apply here as well. I need to be in good mental and physical health to support and take care of our son and of course my family. Seems simple enough, right? I also think as the days and months went by, it dawned on me that I was having symptoms of all sorts of negative feelings, but mainly anxiety, fear, depression, intensity, and all the things that typically come along with these feelings, which resulted in me to not be my old self and unfortunately negatively impact those around me, mostly at home. This is where and why I correlate what we’ve experienced as going to war. It has and continues to be, even though I have made some progress, hard to exit this emotional roller coaster including the need to want to feel like you are in control, which you’re not. Definitely was easier for me to get into the mode to emotionally prepare for what we assumed we should be ready for than to decompress. Believe this is just a way for my mind and body to protect me from the severe ups and downs, but at some point I have to get off this ride.

Our son is doing ABSOLUTELY GREAT, which we are all very THANKFUL for and feel very BLESSED. He will still require at least one more surgery, which I’m sure won’t be fun merely because he will be much older and will more understand what is going on. As for my state of mind, I believe I’m in a much better place and get quite the enjoyment watching our son enjoy and experience life. I still get relapses of some of the old feelings, but am doing better learning to manage these feelings and coming to the realization that I won’t be the same person I was prior to learning our son has HLHS. For me, I think the biggest regret I have isn’t with how we supported our son or recruiting help from family to assist with our daughter so we could focus on our son, but rather the regret of not supporting my wife more positively from an emotional perspective. I believe the things I attempted to build around us to prepare for this battle was mostly beneficial; however, in hind sight, I do regret not doing a better job of supporting the emotional aspect of this journey for my friend, my partner, my wife. For that I’m truly sorry!

I realize even more now living through and experiencing this type of world will undoubtedly make an impact on you. The HLSH community is a small one, but a VERY LOVING, UNDERSTANDING and PASSIONATE one from the families to the medical professionals. I have found it is hard for others, family members, friends and co-workers to understand this world, which is to be expected. But we have found there is another family out there that does understand and that can more relate. I think for me, I’m still digesting all that has occurred, hence my analytical personality, and trying to learn what it is I can or should be doing after experiencing this world. It may be as simple as just loving and supporting our son and allowing him to experience as much of a normal life as he can while also loving and supporting my wife and daughter. For now, I’m choosing to LOVE and SUPPORT my family the best I know how, who are the people on this Earth that mean the most to me. If that is all this experience is supposed to teach me, then I ACCEPT it with OPEN ARMS!

God Bless!

Chase's Daddy