Monday, June 26, 2017

avoiding the inevitable (heart surgery in our future again)

Friday, Auriana had a cardiology check up (as she does every 6 months). We have been watching her Mitral Valve for several years now, knowing in the back of my mind that sometime she will need a mitral valve repair, making her 4th open heart surgery. Every appointment the reality of this becomes more and more evident. The past couple appointments, cardiologist has used words such as "mild" and "stable", but Friday the words changed to "moderate severe". Moderate severe, in the land of heart defects, is a nice way to say "this is becoming a real threat but not yet an emergency". You see, in CHD world, it is common practice to wait until the child's heart is in a state of emergency before finally choosing to go ahead with the surgery you know they have needrd for some time. Auri's surgeon once explained it that "you have to wait until their body knows the heart is bad before you try to fix the heart". When Auri was born, we had to wait until she was in "full blown congestive heart failure" to fix her AV Canal. When her aorta was closing up, we had to wait until her heart was backing up to the point of discomfort in order to remove the membrane blocking her aorta. When the left ventricle was closing off, we waited until blood barely flowed through and was causing her oxygen levels to go down, before fixing it. Apparently this is to keep the body and the heart from going into shock. So, now with words like "moderate severe", she is once again in that tricky place of "bad" but not "too bad". Her mital valve is quite sticky and is pulling oxygenated blood back up into deoxygenated blood and mixing it up and spitting it back out into her body. But, her oxygen levels read high 90's (which is common for her even when her heart is bad). Auri's little body compensates well, but her heart will need repaired again to keep it working. The biggest indicatorat this time is her blood pressure has started evelvating, even while on blood pressure medication, and her heart pressures are elevating and causing one side of her heart to begin to swell. Currently, the goal is to get her to January or so before putting her in the surgical team referral pool again. For now, she is happy and "healthy" and active, and has no idea that she will soon be back in the hospital for her heart, fighting for her life again. My baby Auri is such a strong girl and she doesn't even know it.
God has gotten her through 3 surgeries and I know he will get her through another, but it doesn't take away my worry. For now, we will just continue to live life as normal as possible and try to keep the thoughts in the back of my mind of the inevitable surgery we have avoided this long.
Auri will start a new school in 3rd grade in just a few short weeks. She will go to the same school as Kylee and Lily. This will be an exciting new venture. She will also have her 9th birthday in just a few short months. For now, we will look forward to these positives and pray for the future. Pray that the goal of January does not become a sooner reality and pray that Auri will stay strong.

Tuesday, November 22, 2016

A new chapter. We have a son!

Asher Seth arrived on his own timing on Tuesday, November 15, 2016 at exactly 3 pm!!
We had a scheduled c section that was scheduled for November 29. This was my last pregnancy. Doctors told me early on that i would have to have a c section, so i had already planned on that. I also had opted for a tubal (because well...5 kids is enough...7 between the 2 of us...more than will even fit in our vehicle)... So anyway, i had met with the scheduled delivery doctor several weeks ago and discussed my plan for Asher's birth. I had chosen the "perfect" doctor, chosen the day and time, opted for a "gentle c section" where i would not be strapped down, the curtain would be lowered, the doctor would put him straight onto my chest, allow me to breastfeed while still in the OR, they even agreed to keep Asher and my husband bedside during the closure of the c section. All of this was planned.
Well...God had other plans apparently.
Tuesday morning, i woke up feeling strong contractions. Told my husband i thought i was in labor. I went ahead and got all the kids ready and took them to school. My contractions got even stronger while driving. To the point where i called my doctor and was told to go to labor and delivery. So, i still had Lily and Abby with me and now needed to find someone to get themas I sat in the hospital parking lot. A sweet friend ended up coming and picking up the girls and getting them where they needed to be while another sweet friend came and sat with me in the hoapital until my husband finally accepted the fact that yes, i was actually in labor...this was not in my head. This was not braxton hicks. I had gone into labor and my blood pressure was sky high at this point and this baby would be coming it or not.
"MY doctor" was NOT here. The doctor who was here was NOT accepting of the gentle c section idea, and on top of that it was the only male doctor in the whole practice. I was a little upset by all of this...but my son was
So, once my husband was there, everything started moving quickly. I was given an hour to prepare for this. I immediately started calling and canceling all my children's doctors appointments for the coming days (which i still have to reschedule). I called my mother to let her know what was happening...and somehow she managed to get all of my other children.
So...i was taken to a freezing cold Operating room. I swear this activated ptsd from my past traumatic experience in the OR with Auri. I requested a midwife be present. Unfortunately, none was available. There was a very uncaring nurse who at one point said to me "suck it up", 2 anesthesiologist, and a doctor who had a less than plesant demeaner (in my opinion). Oh well. I tried to be excited that at least my son would be here soon.
So, at 3 pm Asher was held above my head. Tiny and purple. He did not make a sound. I kept asking "is he ok?" no one answered me. The anesthesiologist finally said "he is alright. They are cleaning him up". I couldn't see him at all due to the angle of the bed. My husband wasn't telling me anything. I don't think he knew what was going on. The doctors weren't telling me anything. "They are taking him to nicu" i wispered...practically to myself, since no one was listening to me. And then...i heard him cry...a forced cry...gurgling cry. Finally someone said "we will have to take him to the nursery to watch him"...i begged them to let me see him first. They did. They let us get a couple pictures with him and then took him to the nursery. I told my husband to go with our son. I was left there laying on this table to be closed up, where the doctor and the nurse and his assiatants all argued over political nonsense. No one spoke to me. Whatever. And i layed there, still not knowing what was going on with my son.
I was then taken to recovery. A nicu doctor finally came in and told me he was breathing fast and had a high heart rate. Then a nurse came and brought me a picture. The only pictures i had seen at this point was a few on my husband's phone.
A couple more friends came to sit with me in recovery. My husband was in and out checking on our son, i believe he also ran home to get clothes for the girls. This part is all hazy to me. I finally was taken to a room and a few hours later the best thing happened...a NURSE BROUGHT ME MY SON!!! I immediately nursed him...and he latched to my surprise. He was tiny...but he was ok!!! Asher Seth was 6 pounds 3 ounces and 19 inches.
He was ok. And finally....that's all that mattered to me. I couldn't stop staring at him and thanking God that he was there and he was in my arms now and he was fine.
God knew i could not handle another true NICU experience.
And so far, i think his early arrival has been a blessing in disguise, since the kids are out of school this week. I have had to reschedule lots of appointments but it will all get done sooner or later. My husband was able to get a couple weeks off work to be home and help. My mom has been able to help with the girls. And ultimately i have my first and only son at home. The girls are in love. Our family is complete.

Thursday, September 8, 2016

"Just" a mom...

"Mom, what are you?" my 10 year old asked. "I'm your mom." i answered. "No. I mean WHAT are you? What do you do?" she says. You see, she is in a new school. They have a "college and career" class. She wanted to know my "job title" apparently. So i thought for a minute and told her that I have a certificate as a nurse assistant, i also had a certificate in Medical coding and Billing, however I have not worked as either in several years. So, my final answer is I am a mom. She looks at me puzzled and says "great... Guess I'll just write my mom is just a mom". She then lost interest in the conversation and went back to watching a show on her phone.

Ironically enough, last night in our small group at church, the topic was Identity or Spiritual Identity.

And it got me thinking about something that crosses my mind every now and then, "what am I? Who am I? What am i doing here? Am i simply wasting my life?"

As a child, I had all these dreams and hope for what I would be in life... A doctor, a teacher, and I also always knew that one day I would be a mother.

However, I became a mother just after my 19th birthday. Shortly after that I was married. This marriage eventually ended after I had yet another child. Anyone who knows my family, knows that my second child has Down Syndrome and many medical concerns. This has required me to learn a lot to be able to properly care for her. My faith in God carried me through that pregnancy as well as many sleepless nights dealing with medical concerns from tube feeding to heart defects. Anyway, i went on to have another child and another failed marriage. And another child, a marriage that is on rocky terms, a couple of step children, and I am pregnant again (with what will be my first boy). That brings us to today... Nearly 11 years since I became "just a mom".

After thinking about being "just a mom", it could be argued that there is no such thing as JUST a mom... A mom is a nurturer, a nurse, a short order cook, a taxi driver, a janitor, a laundry attendant, a personal assistant, and so much more... A mom can mold herself into a thousand different "titles".

But there is more to it than that. I want my children to see me as a strong and confident woman who has her life "together", whatever that means. Whose life is really together anyway?

So this brings us to the question, what does God say about WHO we are...WHAT we are?

Just skimming through Ephesians 1, the key words that stand out to me are chosen, redeemed, and forgiven.

Chosen is defined in the dictionary as "having been selected as the best or most appropriate."

Redeemed is defined in the dictionary as "to be compensated for the faults or bad aspects of"

Forgiven is defined as  "to grant pardon or remission of a debt or offense"

Anyway, i began writing this and then had to stop as I had to attend to my children. One child just happened to turn on the radio and a Matthew West song was on;

"Hello, my name is regret
I’m pretty sure we have met
Every single day of your life
I’m the whisper inside
That won’t let you forget
Hello, my name is defeat
I know you recognize me
Just when you think you can win
I’ll drag you right back down again
‘Til you’ve lost all belief
Oh, these are the voices. Oh, these are the lies
And I have believed them for the very last time
Hello, my name is child of the one true King
I’ve been saved, I’ve been changed, I have been set free
"Amazing Grace" is the song I sing
Hello, my name is child of the one true King"

So... I will just end this right here... I am a MOM. I believe this is what God wants me to be at this time in my life and he is still showing me how to do that right. I believe he wants me to know that I am important, i am needed, i am loved, and i am exactly where I am supposed to be at this time. 
The world wants us to think we are not good enough, that we are not doing enough, that we should be more and be better.

God says we are exactly who he made us to be. This is what I want my children to know about me and about themselves.

Do not let the world define you. Do not let the world determine your self worth. Do not let the world determine what or who you are.

Tuesday, November 4, 2014

Welcome number 4!!!

On October 7 I went to the hospital for a biophysical profile due to baby being past her due date and my blood pressure being a little high. During the test, nurses noticed that her heart rate was dropping with every little contraction I had. So they admitted me overnight for monitoring. The next morning it was determined that it was best for baby if I had a csection due to her heart rate continuing to be affected during every contraction and she was showing signs of distress. So, as much as I wanted a natural birth, csection it was. It was much different than the emergency csection I'd had with Auri though, I walked to the OR, my midwife went with me and mixed me some essential oils to diffuse during surgery to help me stay calm. As soon as I walked into the OR, I started having flashbacks of the horror that came with Auri's birth. I was terrified I would feel the pain of being cut again. I was terrified her heart would stop like Auri's did. The staff, nurses, midwife, and the anesthesiologist were so great at keeping me calm and assuring me that it would be a better experience.
Tiny baby Abigail Grace entered the world at 9:11 am on 10/08/2014. She weighed 6lbs 4 oz and was 19 inches long. The first thing I noticed was her head full of hair. She is beautiful and she brings back so many memories of each of the other girls when they were babies.

Thursday, September 25, 2014

Happy day Auri!!!

This time 6 years ago, i was sitting in a NICU staring at my precious Auriana Faith wondering what would become of her. She was born premature, wirh a serious heart defect, had to be tube fed, and was just so tiny and fragile. I prayed ever second that i would be able to take my baby home. God answered those prayers!!
Auriana came home with us on October 2nd, 2008!!
Since then, she has grown, had several setbacks, but has overcome everything. I recall the day i took her home, the NICU physician looked at me and said "now, we are letting you take her home like this because you are so eager to take her home, but remember, this baby has lots of problems. She may never eat on her own, she may never walk or talk like your other daughter... Just don't expect too much. After all, you're lucky she is alive."
Yes, well, i trusted that God had another plan for my tiny little cabbage patch sized baby.
And He did!!
She is still tiny... At 6 years old now she is the size of a 2 year old. She weighs 22 pounds. Auri has had 3 open heart surgeries, numerous other procedures, and overcome many struggles.
But, she does eat (weaned her from the feeding tube at 29 months old), she walks and talks and smiles!! She is a happy little girl most days and has recently learned all her colors, recognizes some letters and numbers, and basic shapes!! She is doing wonderful in the home school program i have decided to use to teach her... She has already exceded what she knew last year.
Auri does attwnd regular speech, occupational,  and physical therapy. But she has surpassed the age of 5, which the NICU physician told me was not likely and she is THRIVING!!! She loves life!!!
This past Saturday we celebrated her 6th birthday with a few close friends and family. She had her Barney cake and she loved it!! She said all day long "its MY happy day!" "it's MY DAY!!" her birthday was actually last Wednesday, September 17, and every day since has been "her happy day". Her favorite things are Barney, signing time, mickey mouse, doc mcstuffins, and jake and the neverland pirates.
She loves her new barney doll she got for her birthday.
At her party, she sang all the words to "happy birthday"! Cutest thing ever!!
This is our season of birthdays around here.
My birthday is 3 days before Auri's and next we will soon be giving birth to a new addition who we have already named Abby, then Kylee turns 9 october 30 and then Lily turns 3 December 1!! A busy time of year around here!! I wouldn't have it any other way!!! I love my little girls and love watching them and seeing who they become...
So for now Happy sixth birthday to my precious Auri!!! God definitely knew what he was doing when he gave me you!!!

Monday, August 25, 2014

nobody chooses online nonsense over cleaning... right?

Yep... and here I sit again in front of the computer, scrolling through Facebook after I "just got on for a minute to check email" after I got the kids to bed. 
Sink full of dishes and a pile of laundry stare at me as I type this... but I ignore it.
The 3500 books and papers a kid pulled off the book shelf mid tantrum this evening is still laying here in the floor...
but yet...
I'm sitting here typing randomness into the blank screen on my computer.... after spending the past 20 minutes scrolling through nonsense on Facebook...
well, because it is somewhat of an escape I guess... reality disappears into the computer screen..
isn't it like that for a lot of parents?
So here's just a snip it of why I need 30 minutes to just let the mess disappear and pretend I'm on some little island in the middle of nowhere... at least one night (or more) a week the night goes just a little like this... turn off Tv to get kids in the bathtub... listen to the m scream how that was their FAVORITE SHOW and it WILL NEVER COME ON AGAIN and IM SO MEAN... yeah yeah... ok kid... that show has come on probably 50 times in the past week and I guarantee it will be back on tomorrow. 
Meanwhile another child is in the bathroom because I forgot to shut the door... what is this child doing in the bathroom? oh, just dumping water in the floor. water from where? oh... just the toilet water... that's all. Great. this one gets bath number 3 today. 
So, one kid bathed and dried and dressed and in the bed. 
(and bathroom floor err... mopped with a towel...)
One more in the background still throwing a fit that the TV was shut off.
The other comes running in to get her tub time... ok... this one loves the tub so she doesn't want to get out.
We HAVE to get out. still have another one that needs hair washed tonight.
Ok... so this one gets out (after bribery) what? no I don't bribe them... never. so 2 down to bed. 
Now it's past "bed time". The dilemma... do I fight to get this one in the bath tub or do I cave? hah... who wins? we compromise wash the hair over the edge of the tub. yes you had a bath last night. yes you can get one again tomorrow night. ok. finally. bed. 
All. Of, Them. In. Bed.

So... back to the disaster zone that has taken over my living room...
Yes... it will get cleaned up...

I know other mothers can totally relate to this scenario, right?
come on... I can't be the only one to not have children who are angels all the time...
funny thing is when they are gone... even just for 1 night... I have no idea what to even do. In fact, I think I miss the chaos and commotion that has become my life...

So... back to reality now... the dishes will probably get done tonight, the books will get put away... lesson plan will get done for school tomorrow.... then I'm going to bed to start it all over again in the morning... 

oh, did I mention... I'm also 8 months pregnant and I home school my special needs child? Yep. 

I am going to envision "happy thoughts"... Rainbows and lollipops and fairies that magically clean my house for me... maybe our day will be filled with sunshine tomorrow... yes.... sunshine and happy thoughts and everyone will listen and no one will complain. That's it.... 

"Just think of Happy Thoughts and you'll fly" - Peter Pan

"If you want it, you must will it. If you will it, it will be yours." - The Mighty Sven

We will have a good, calm day tomorrow.... we will have a good, calm day tomorrow... we will have a good, calm day tomorrow...

Wednesday, June 4, 2014


Blessed.... that I AM!!
Sitting here reflecting on my recent past and realizing how very blessed I truly am, even though it is hard for me to see at times through all the daily stresses and feelings of being just exhausted and overwhelmed.
I have been blessed to be called to be a mother! This is something I often take for granted, sadly. God has gifted me with 3 beautiful little girls... each with unique qualities.
Kylee--Such a bright girl-- I am starting to realize that often she is just misunderstood. She seems to see things differently. Kylee remembers things from years past as if they happened yesterday. She remembers everything she reads and she can see stories in her head... and TV shows... and songs... he can vividly recall every line. With the right tools she will be able to use this gift for good in the future.
Auriana--my little fighter--doctors told me the whole time she grew in my belly that she would surely not live and if she did she wouldn't live long and would never walk or talk. She has proved them wrong. She walks. She talks. And so much more. She also has memory like her big sister, that is often misunderstood. Auri remembers dances that she sees in songs from Signing Time and Barney. She replays these in her head and acts them out all the time. I only wish I could learn to channel this gift into teaching her other things. I truly believe she will continue to prove the world wrong. Even I do not know the extent of what she can learn and how she can succeed.
Lily--Such a sweet caring girl--a little ray of sunshine in the morning, she wakes everyone up (much to early at times) with "good morning. I love you." with a huge smile. This wake up call is often met with a much less energetic "Liilllyyy" from those she wakes. This and her truly caring spirit and her concern for those around her... these alone will get her far in life. I can not wait to see what the future holds for her.

I take for granted every day what great things my girls have brought to my life!

I pray for the future that I can see the blessings in front of my eyes and not focus on all the difficult things.