PTSD and Elisha's heart surgery. All in the day of a life of the Allreds.

Tuesday at 4:00 pm. (after nearly 6 hours of waiting) I was at Sacred Heart Medical Center in Spokane, Washington entrusting the life of my oldest child to the cardiologist for heart surgery.  This was the second child I've had endure heart surgery.  I didn't like it any more the second time around than I did the first.

In fact, this entire experience has brought round a pretty good case of PTSD, and an enormous amount of retrospection over Jacob's life during the past 4 years - not to mention many prayers of thanks for Elisha's.

I couldn't help but remember the day I was at the OBGYN and he told me Jake would have Down syndrome and a pretty significant heart defect.  He asked me if I wanted to abort.  The answer was immediate and adamant.  "Absolutely Not!".

As I prepared for Elisha's surgery, I often wondered how many parents have aborted a fetus merely on the basis of a heart defect.  Their worry that the child would not have a normal life, that it would be riddled with pain, sickness, or inability to be like the other kids.  I know pain was my first thought with Jacob.  How much pain would he be in? Could I, as his mother, handle watching my child with an enormous hole in his heart, suffer as a child?  Would the operation hurt?  Would he survive. After all, it IS his heart.  It's not like they're fixing an ingrown toenail. What would his quality of life be?

Those first three months with Jacob were as bad as I had envisioned them to be.  He was soooo very sick. He spent nearly every night of his first three months of life in the hospital, and I would sleep with him on my chest so that he could be upright and breathe easier.  He was so sick and listless his therapists were afraid to touch him and refused to treat him until his heart was fixed.

What I can tell you though, and I'm sure you've deduced from past and recent posts, is that the moment he had his surgery, a light flicked on and he turned into this crazy-busy fantastic little boy who laughs and giggles until everyone else around him is laughing and giggling.  He's smart, and mischievous, and adorable, and stubborn, and everything I could have possibly hoped and dreamed for in a little boy.

Now I look at Elisha, who apparently has apparently spent her entire life with a rather large hole in her heart as well.  How the doctors never caught it, I'll never know.  The first cardiologist diagnosed her with a large PFO (Patent Foramen Ovale).  On a scale of 1 to 5 (5 being the largest), he was pretty sure she had a 4 or 5.  And when she bore down (flexed her stomach muscles), there was a massive amount of shunting from the left atrium to the right (upper two chambers), almost as if there was nothing there to hold the flow of the blood back.  A second opinion proved that she didn't have a PFO, but an ASD (Atrial Septal Defect), which means the wall of the atriums didn't fully close and there is a permanent hole in her heart that will never (obviously, because she's 19!) close on its own.

How did this hole affect her growing up?  Well, she had a few bouts of passing out, and she was constantly tired.  She had little or no stamina during sports.  But you know what else?

Elisha was also ASB president, All Conference Volleyball, 2-time state champion thrower for track, All-State/All-Northwest choir, went to state 3 times for choir, and is now a Division 1 track athlete.  Did the hole in her heart affect her.  Yeah.  It did.  If it didn't we wouldn't have been taking her to the doctors and found it in December.  But the things she was able to accomplish in spite of it, are amazing. You can check out ELISHA's webpage here.

I wonder how many families choose to abort their fetuses because of a heart defect and never realize what an amazing opportunity they're missing, and how normal a child's life can be in spite of a congenital heart defect.  I sit here and shake my head.  What a loss. And how lucky I am to have had faith and know that everything would be alright.

With two children having heart defects, I'm not sure if their connection is genetic or just really really bad luck.  But what I do know is that there was a lot to be learned from the eperience.  Not only for myself, but Elisha has learned and matured from it as well.  It puts life into perspective quickly.

We have several moments to pause and think hard in the last few days. Especially when her heart rate plummeted during the initial IV insertion from 78 beats per minute to 35 and the room went from 1 nurse to 4 in seconds.    And again when her doctor came to us after her surger and mentioned that her heart had stopped for four seconds before they'd even begun the procedure.  All the sudden even the most invincible person becomes mortal. And it scares you.  It definitely scared me.  And it prioritized my life quickly.

After much consideration, Elisha and I have decided to start a non-profit called Allred Hearts.  It's for families affected by congenital heart defects.  If you walk the halls of Sacred Heart, you see entire levels dedicated to people with heart issues.  And having two in our family with a CHD (Congenital Heart Defect) we are acutely aware of how it affects a family and how much help and support a family needs during the process.  The night before her surgery, Elisha helped me create the logo for Allred Hearts.

Our family has been through it all.  Open heart surgery, a baby with surgery, a college student with heart surgery, being denied by insurance, the uncertainty of life with a CHD, and the promise of life after heart surgery.  We've felt the pain, the stress, the hope, the love, and revelled in the little moments that such experiences help us to realize and appreciate.  We hope to share that with others.

Please, help us to help others.  Show your support to Elisha, Jacob, and our new endeavor, by clicking on the logo Elisha created, and helping us to create the non-profit.

Thank you, everyone, for your love, support, prayers, and help over these last few months (for Elisha) and years (for Jacob).  We could never have done it without the help of such a great community of friends, family, loved-ones, and KC's work, Avista.  It has been the thousands of acts of kindness that have helped us get through so many trials.

Many thanks,

KC, Susan, Elisha, Nathan, Courtney, and Jacob Allred.

Update on Gemiini.org - It's been a long time coming!

What does a crab say?

Holy cow!  I did NOT intent to go six months before returning Jacob to the Gemiini Program. But, life, being life, threw us a curve ball and we've been knocked flat on our butts for the last four months dealing with test after test, blood work and doctors appointments for our oldest daughter (age 19) after it appears she had a TIA (a mini-stroke) at Christmas. 

Come to find out she has a hole in her heart and a macro adenoma (tumor) on her pituitary gland in her brain.  But....that's a story for another blog :)

During that same time, we discovered that Jake's T-tubes had fallen out.  How can that possibly be? Those buggers are sewn into the ear drum and don't fall out. They're surgically removed. 

Yeah, well.  This is Jake we're talking about.  If it can't be done, he will do it. 

So, in January, he had his second set of tubes put in, and the ENT said this ears had looked horrible when he did the surgery - pieces of flesh were removed, both ears were highly inflamed, lots of fluid behind the eardrum, etc.  Yeah, all sorts of nasty fun. 

But, when the surgery was done, he began to hear.  How do I know?  Well, he'd walk into the ENT's entryway, which was basically a stairwell, and yell to hear his echo.  It was adorable - in a cute sort of way.



What does a Lizard say?

We took him to an audiologist twice to make sure that he could hear and were told that he can hear down to 2 decibels (he's in the range of normal).  Wahoo!

Now, we begin playing the game of catch-up.  Still, at 4 1/2 years old, Jake is basically non-verbal.  Occasionally (as in once every 2 or 3 weeks) he will say a one or two word comment, which his hard to understand unless you're looking for it.  But other than that, life is all about a series of grunts, hand gestures, and pulling on my hand to show me what he wants.

Last week we were finally able to start Gemiini again - after nearly 7 months.  I figured we'd be starting all over again.  But you know what?  It wasn't like that at all. 

As soon as the videos came on, it was like he'd found his long lost friend.  Jake looked at me and his eyes lit up, then he began mimicking the animals and the sounds he'd learned previously.  It was like he'd never stopped!  I can' tell you how nice it was to know we hadn't lost all his hard work. 

We were able to get about 20 minutes in that morning.  And another 10 in during the afternoon. 

The big issue we're having right now is that I'm using the Ipad and he likes to play with the buttons - hitting play, then rewinding, then fast forward, etc.  I think it's a universal thing for kids his age.  I hear there's a way to lock the screen, which is my goal to figure out tonight. 

But I know that people were waiting on an update.  So this is the first.  I'll add a video of him watching Gemiini in a couple days so you can see where he's at in the process. Then I'll give you more updates as we progress.

Thanks for your patience!

A random story about Jacob

 *All names, locations and information was made up to protect the innocent*

Once upon a time there was this little boy named Jacob. 

He had 3 big brothers and sisters who always seemed to have fun.  Jacob wanted nothing better than to run and play with his brothers and sisters. 

But because he was so little, he was often left behind.  

Poor Jacob.  He was so sad.  Being little was nooooo fun. 

One day, little Jacob decided he wasn't going to stay home any more.  

So he filled his backpack with goodies, and decided to go on an adventure of his own. 

During his travels, he want to the botanical gardens,

National Forests,

And even the grasslands of Africa.

Every day was an adventure for this little fellow. 

After traveling the world, little Jacob decided it was time to go home.  

He packed up his bags, and made the long journey back to his family.

His big brothers and sisters greeted him with open arms and told him how important he was to the family.  They had missed him soooooooo much!  Jacob never realized how important he was to his family, and decided that he would save the rest of his travels for another time when he was much much older.  

The End!

P.S. ~ This was just an excuse to showcase some of my favorite Jacob pictures from the last couple of weeks :)

Our 1 - Year Anniversary!!!

NOTE:  FINALLY found myself back on my blog and saw that I'd never finished and/or posted my latest entry.  It's from MARCH!  Ouch....I must do better.  There will be another one with much more upbeat news shortly.

On Friday, I called our heart doctor and scheduled an appointment for his 1-year echo cardiogram. That one single phone call set off an entire weekend filled with retrospect and reminiscing over what our lives have become in the last year.

With Jacob now 16 months-old, and 13 months after his heart surgery, time has flown and our little Jacob has grown by leaps and bounds!

It's hard to believe that just one year ago we were, in essence, watching our baby slowly die before our eyes, and what a tremendous feat it was just to get him to reach 10 lbs in weight.  The physical therapist wouldn't even touch him because he looked so sickly, and I just looked at him in awe at his calm, patient demeanor as he endured his own personal trials at such a young and tender age.

(Jacob immediately after heart surgery)

As we look at photos, it is easy to discern which photos were pre-surgery and post-surgery by the sadness and lethargy in his face.

(weigh in just before surgery)

But as soon as he had his heart repaired a light literally switched on.  He was taken off ALL of his medications before he left home.  He was taken off his feeding tube within a couple of days of his surgery.  No longer did he just lay limp and lifeless watching the world go on around him.  He began to engage, smile, move, and LIVE. 

At his 1-year review with the cardiologist, we were told that not only does his heart sound nearly perfect, but they won't even do much more than listen to it with a stethoscope next year.  Our little boy has gone from missing the center of his heart, to a complete recovery physically.

Now he runs around after his sister, giggling as she runs screaming from him terrified of his assault on her personal space.  He walks, runs, climbs, crawls, squats in a catcher's stance, and spends every waking minute making up for lost time, exploring the world around him and all that it holds for our sweet little boy.

For us, the future is bright, and our hopes for Jacob are high.  Rather than standing at idle, we are moving full speed ahead trying to keep up with our dynamic, happy, lively little boy.  Wish us luck!

Family visits and taking time for myself while Jake is in the Hospital

Friday was a relatively good day.  Jacob's platelet counts are up to 71,000 which means that he is 29,000 away from the 100,000 goal that we need before the doctor will do his spinal tap for meningitis.  He is still modeling (splotchy look to his skin), but he is doing sooo much better this evening than he was last night.


KC came in bright and early this morning around 6 a.m. and took the day-shift for me.  He mentioned that he met with the Urologist who explained that his kidney issues needed to be addressed, but we needed to take care of the infections first.  So, they just wanted to put him on antibiotics until his surgery. 

Jacob spent most of the morning eating small quantities of milk in the morning, but the amount grew as the day wore on.  At one point he was up to 4 oz. again, but wound up throwing it ALL up again.  It's still kind of disconcerting that he's throwing things up, but I'm thrilled to see the progress (and lack of new developments) over the last 24 hours. 

I took the night shift again and had KC's family come visit.  Aunt Karen, Aunt Tonya and Grandma Allred all came and visited Jacob, held him and gave me some much needed 'adult' time.  Grandma Allred really seems to have the touch because she was the last to hold Jacob before they left and that little boy had some solid hard-core sleep time for a few hours after she left.  It was soo nice to have him sleeping so soundly and not waking up every 15 minutes because he was uncomfortable.

I even got to go home early - I left around 3:30 a.m. confident that he wouldn't be choking on his own phlegm or throwing up in his sleep and got to have 5 hours of my own hard-core sleep.  It was nice to wake up knowing I could face the world today.  :)

I came into the hospital room and saw Jacob sleeping like a baby.  Yay!  And aside from the occasional doctors visits and nurses checking on vitals, he's continued to sleep deeply for the last hour - thus my quick(ish) blog!!

They did another platelet count and said that his counts are up to 81, 000 (only 19,000 to go!), There is no longer ecoli in his urine and there are no new bad developments.  Dr. Mueller even mentioned we might get moved back to Pediatrics in the next day or two but said that they were in no hurry to kick us out ;)

Sooo, today is starting out to be a good day.  Hopefully, I won't have reason to get on this blog and write again today. No news is good news, right????

Psych!!!

So yesterday I had my weekly "You get to spend all DAY at the doctors' office doing tests" day.

This Friday I got to go in for a Biophysical Profile, a growth scan, and then meet with my OBGYN to find out all the results and to see if anything needed to be done for the baby.  Yesterday, I drove 30 min to the ultrasound and had the baby kicking and moving the entire drive.  As soon as I got into the Ultrasound room, he decided he was tired and fell asleep.  Niiiiiice.  NOT what you want to happen when they are checking for fetal movement.   So we spent 1/2 hour trying to wake the little bugger up - they moved me onto my side, then back onto my back, then made me put my legs straight out, then gave me some apple juice to get him all 'sugared' up, then I emptied my bladder, they put a vibrating buzzer up to him to scare him awake...nothing.  This kid would NOT budge.  Is it too much of me to ask that he sleeps the same way when he's OUT of my tummy too?

Needless to say, he just barely passed the "breathing" part of the test, but he failed the movement part horribly. 

I went to my Doctor's appointment and he talked to me to see if the baby had been moving, which I told him he had.  He asked me if there were changes, and I basically told him my contractions were further apart but more painful.  He asked me if he needed to check me and I said, "Nope.  You and I both know that I'm not having this baby before induction date.  I've been induced with all of my 3 other kids".  Normally I'd at least get a smile from him.  Nothing.  Hmmmmm.

He told me that the baby had failed his BPP and that he needed to send me to the hospital for another test.  I said, "OK".  We discussed when induction would actually be (the 25th) and he realized we didn't choose a time, so he had Megan, his nurse take me to the scheduling nurse to schedule the induction  and even suggested to her that she take me to the hospital.  I informed her I'd been there several times already and I was sure I could find my way.  The whole time I was with them at the office it was if they were waiting for me to FREAK OUT or something....just kind of treading lightly.


C'mon.  Seriously? If I thought that something wasn't right, I'd be the FIRST person to be saying something.  Knowing that something can go wrong at any given time has made me ubber sensitive to what's going on inside me.  If Jacob hadn't moved all morning, I would have been concerned.  Besides, this is NOT my first pregnancy, and it certainly wasn't my first time hanging out at the hospital for some Stress Test to prove what the previous ultrasound had already confirmed...his heart was beating regularly and at the right speed and all was fine.  I just had a heavy sleeper inside me. 

So, anyway...I called Elisha to let her know I'd be staying a little longer than expected. And I called KC (who of course, was in St. Maries and 3 hours away from me with sporadic cell phone coverage)  to let him know I was going to the hospital, but not to worry...just DON'T ignore my phone calls if I try to call again later ;)  I stopped by the intake office (I hadn't turned in my intake paperwork yet for the actual induction date) and they looked at me funny for not going straight up to the Labor and Delivery office.  I just ignored them.

Finally, I made it to Labor & Delivery.  They had been waiting for me and already knew me by name.  They took me to a little room, hooked me up, gave me a TV remote ( I can't remember the last time I've watched TV during the day....nothing has changed.  It's all still CRAP) and left me to lay there for about 30-45 minutes as the machine monitored the baby's heartbeat. 

Funny thing happened....NOTHING. His heartbeat was just fine.  Nice and steady.  No arrhythmia, not stops, no gaps.  He was a normal little baby STILL sleeping.  Though I did get to notice that my contractions were pretty much 6 minutes apart while I was there.  Hmmmm something to keep an eye on.

Elisha Allred: Soon-to-be big sister of Jacob, a boy with Down syndrome

My poor little boy freaked all the doctors and nurses out for nothing.  He's nice and healthy.  So they sent me home.  I was glad to leave.  I was NOT ready to have this baby yet!  It looks like, however, that our family will get to spend the rest of this weekend GETTING the house ready. Just as soon as Elisha finishes up her Saturday Volleyball Tournament! :)

This Too Shall Pass....Wait, Maybe Not!

If you've ever been to my house in the last, say, 10 YEARS, you'd know that I really like my motivational quotes. At any given time you can see quotes taped up all over my house - in the bedroom, bathroom, next to my computer, the kitchen, next to the treadmill...anywhere that I spend any significant amount of time.




I use those quotes because I live an extremely chaotic life filled with running to and fro from task to task until I collapse into bed in an exhausted heap in the wee hours of the night...or morning. These quotes are used to make me stop, pause for a moment, and reflect on what I am actually trying to achieve in the midst of this chaos. Sometimes it is weight loss. Sometimes it is increased spirituality. Sometimes it is just to create a certain sense of inner peace. Occasionally, when someone I care about is having difficulty, or needing a bit of motivation, I will pass one of my favorite quotes or pictures onto them in hopes that it helps them in some way to get through the trial or the goal they have in their lives.



One of my favorites for those going through difficult times in their lives is a quote that says, "This too shall pass....like a kidney stone". It's my way of giving support, while inserting a bit of sadistic humor to the situation. So, as I began going through my list of motivational quotes and pictures in search of a 'motto' to help me get through my most difficult moments trying to come to grips with incorporating Downs Syndrome into our home, I rested upon my "This too shall pass" quote and realized that this label, as nice as it is, doesn't exactly fit for me any more.

(Click on the picture to order a mug or a T-shirt)

Yes, certain stages will pass, but the Downs Syndrome itself will never go away. Short of marriage, and the mere birth of a child, NOTHING in my life has been so permanent as the diagnosis of Downs Syndrome for our child. It's not going to go away. We can't cure it. We can't ignore it. Baby Jacob won't grow out of it.



I thought about that for quite some time. And I came to the conclusion that even with all of the new information I collect about Downs Syndrome each and every day - the risks, the problems, the horror stories, and the not-so-horror stories. I'm OK with that. I'm OK with this change in my life - as permanent as it may be. Whatever God and life decides to throw in our family's direction...BRING IT!!!!!!! Because nothing is going to detract from this beautiful new spirit we are about to bring into our family and ultimately the world. Baby Jacob will truly make the world a better place.



By merely being Jacob, he has already made me change my focus from candy bouquets to where it should have been all along - my children, my husband and my family. That one change, in and of itself, will make our family stronger, happier, and more at peace with those around us.



So, this WON'T pass. So what? I have a new picture and motivational quote on my wall next to my computer for all to see. It's a picture of a lighthouse in the water in the middle of a huge storm. Waves are crashing 4 stories up the lighthouse and crashing all around the building. And, if you look really really hard, you can see a lone man in the doorway of the lighthouse, near the railing calmly standing there watching the raging waters crashing all around him. Underneath that picture there is a quote that says,

 "Sometimes God calms the storm...Sometimes God Calms the man and lets the storm rage!"