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.

Getting Ready for the Long Haul

I got to spend the last couple of days visiting doctors again.  Yesterday was spent with the pediatric cardiologist doing another ultrasound on Baby Jacob's heart to make sure there weren't any changes.  Luckily there weren't.  It was interesting, though, listening to the Dr. ask me if Jacob's Downs Syndrome diagnosis was going to affect how I 'handled the baby'.  Obviously I said, "No" and informed him that we were all very excited to have the new baby at home, especially the children.  He seemed satisfied by my answer, but I couldn't help but wonder what % of people actually DO change how they are going to 'handle the baby'?  Abortion? Adoption? What do they do? And WHY IN THE WORLD should a poor, helpless,  innocent little child be punished for something that was never his fault in the first place???

Preparing for Baby Jacob and his Down syndrome diganosis

 Dr. Jensen went over what I could expect at delivery and the weeks surrounding our baby's birth. He informed me that Jacob would be taken to NICU and would probably stay for 3-5 days just for monitoring.  He didn't expect them to need to give him any medicine or stick him with needles etc.  It would just be a precaution.  He then said that soon after the birth he would want to see Jacob at his office and would most likely prescribe him some heart medicines.  The medicines wouldn't fix the heart, but it would help with his growth as the babies usually have issues with lower birthrate and growth rates.  He asked me about Jacob's due  date and I told him it would be Halloween.  He was not too happy about this because that would mean that they would normally try to do his heart surgery around what is normally flu season.  So he decided that if possible, we'd prolong Jacob's surgery until Spring when there was less chance of him being exposed to anything with his weakened immune system.   He told me he wouldn't need to see me again until after the baby was born, and I was done!

Today, I met with Dr. Zweisler.  He did the usual - measured my belly, felt for the baby, and asked me if I was "OK".  My goodness, if he looks at me with those concerned eyes and asks me if I'm "OK" one more time I might actually have to scream!!!  It's like he's waiting for me to come out of denial and totally break down right there in his office.  I guess he still has a bit more to learn about the strength of a Cady girl (Born a Cady, married to an Allred - in case you didn't know). 

He then went on to remind me that he'd see me in 2 more weeks then all of the testing would begin.  Apparently, children with Downs Syndrome have a tendency to have low birth weights, and often come with other 'issues'.  So he wanted to schedule me for weekly BPP's (Biomedical Physical Profiles) and monthly growth scans.  I researched the BPP and found this link which explains what I need to expect from the procedure: http://www.webmd.com/baby/biophysical-profile-bpp

He reminded me that the BPP's will be used to see if there are any other health issues to be addressed, and to see if the baby is in distress in any way.  Obviously, if Baby Jacob is in distress, they will take action to fix the problem.  He also told me that the growth scans will be used to see if there are any issues with Jacob's weight and growth.  So, I said goodbye to the Dr, went to the ladies in the lobby and set up my appointments.  18 of them in all over the next 10 weeks.  Ugh! That's a WHOLE LOT of time with the Doctors!!!!  Here's to hoping it all works out!