Save the Date!!!!

OK, well, it may not be one of those oft anticipated happy occasions by normal standards, but to the KC Allred Clan we're rather excited to announce that Jacob's official heart-surgery date is January 31st!!!!

After walking out of the surgeon's office last week, I was sure we'd be another month out, and I was rather heart broken at that prospect.  But they called a couple of days later and announced that they had an opening on the 31st so I jumped all over it!!!!

Pre-op is scheduled for the 28th, which means I have to set my entire day aside (starting at 9:00 a.m.) to go to the Children's Hospital  to do blood draws (ug!), weigh-ins, X-Rays, echo cardiograms, EKG's and whatever possible test they can think of in order to prepare Jacob for his heart surgery the following Monday.  If they feel that he is in the least bit sick in any way shape or form, they're going to scrap the surgery until they are sure that he is in tip-top condition.  He can't even have a cold (or even the start of a cold - before he even shows the symptoms of one.....there must be nothing in his system that could possibly derail his healing process for his heart).  I made the mistake of asking the surgeon if he could circumcise Jacob while he was under because none of the other doctors would come near him before his heart surgery.  He politely but VERY firmly said, "no".  They don't want to run the risk of bringing any sort of additional infection into the equation - even for something as minor as a circumcision.  Okey dokey. 10-4 on that one.  No circumcision.

The surgeon explained to me in great detail how they would be fixing his heart and explained that, basically, the entire middle of his heart did not develop, so they are going in to reconstruct the heart so that it will function like a proper heart.  I was informed that this surgery will take 4-5 hours.  They will be stopping his heart for about 1 - 1/2 hours and putting it on a machine while they fix it. He will be getting a blood transfusion.  When he comes out he will be on a ventilator, tubes will be sticking out of his stomach to help with drainage, and he will be hooked up to a myriad of different monitors. We can expect a minimum of 1 week's stay, but most likely 2 weeks, possibly more depending on how quickly he heals and if there are any complications.

We were given a 97% chance that he will come out alive - i.e. 3% mortality rate; a 97% that the valves that they reconstruct will work just fine - i.e. a 3% chance that a valve will need to be replaced within the next 5-10 years;  And a 10% chance that he may end up with a slower heart-rate than when he started which would mean that he would be put on a pace-maker that would be embedded in his chest with a battery, which he may or may no grow out of and not need at a later date. 

Putting this all into perspective, I am very upbeat and at peace with what is in store for Jacob and our family over the next several weeks. 

Had Jacob been born with the middle of his heart missing 100 or even 50 years ago, he probably would have died at 3 weeks of age when he first experienced heart failure. 

Even though this surgery is major and life-altering, I know that the sooner this takes place the better for Jacob.  Apparently, he is small, even for a child with Down's syndrome.  Courtney was born at almost 9 lbs.  Jacob, after 3 months, just broke the 10 lb mark.  He is JUST NOW growing out of some of his newborn clothes!!  He takes 6 different medications on a daily basis, and has to take various combinations of them 6 different times throughout the day.  These medications not only cause him to cough, gag, vomit and break out into a cold sweat, the Digoxin causes him physical pain each time he takes it. 

I am TIRED of seeing my baby in pain each and every day of his delicate and precious little life.  And no one will come near him with a 10-foot pole to help him progress physically in any way until this surgery is done.  We cannot move forward with his life and improving the quality of it until this surgery is finished.  So, it's time to push forward and make it happen.  The sooner the better. 

KC and I were discussing our anticipated reactions to this surgery. He thinks that he'll freak out just before the surgery.  He thinks that the fear of losing Jacob will overcome his rational thinking and that's when he'll 'lose it'.  I'm pretty sure my 'lose it' point will be when he gets wheeled into his PICU room filled with a wall full of monitors and have to worry and wonder if he's feeling any pain from the ordeal he's just experienced.  Then, knowing that after such an ordeal, I will not be able to hold him and comfort his cries of pain.  But just sit there next to him and listen.  Wow.  Even now, I know I'm not ready emotionally for the helplessness of that feeling.  Luckily, I have 2 weeks to brace myself emotionally - to prepare  myself for what is to come. 

Regardless, I hope that you can remember January 31st, and be sure to pray for Baby Jacob that he will come out healthy and relatively pain free from this experience. 

Until then, I'll be running around like a crazy chicken trying to get my family and my home ready for his surgery and the time we will be spending in the hospital.  Blog postings will be sporadic at best, but I will try to keep you posted of any major developments and pictures will be on the way here shortly. 

Thanks!!!!!

Blood is Thicker Than Water

Courtney has always been a rough-and-tumble girl.  From the minute she was born weighing in at 8 lbs 15 oz.  the nurses described her as "sturdy".  She has lived up to that name in every way.  She towers over her peers, she is sticky sweet if it suits her, and down right ornery if it doesn't. It was immediately apparent that she was a strong-willed, spitfire that wouldn't let anything get in the way of whatever she wanted whenever she wanted it.  Even at 20 months, she tests the limits of my patience and intellect as I try creative, non-violent ways to reign in her semi-devious, stubborn, and precocious personality. 

Many a night have I sat up wondering what I can do better to teach her to use her super powers for good rather than evil.  I worried even more when Jacob was in my tummy waiting to be born.  Knowing what I know about Courtney I often wondered how she would react to going from "Princess" to "Middle Child".  I worried about how she would handle having so much of our time diverted from her to Jacob and if she would become even more of a handful just to get more of our attention. 

Luckily, we were blessed with one of life's small miracles.  About 1 month before Jacob was born our rough-and-tumble 'base-jumper' began to take an interest in babies.  All of the sudden she decided that rather than jumping spread eagle off our kitchen table, she wanted to carry around her dolls and sing them songs.  As predicted, when Jacob was born she spent very little time with KC and I. We spent weeks in the hospital and they prohibited visits from children under 3.  Courtney didn't even get to see her brother until he was 10 days old, and then only for a day before he returned to the hospital. Then she waited another 3 weeks to see him until he came home again.  That 1 day was all she needed to make a miraculous change.  She began asking for her brother on a daily basis, and ramped up her maternal nature with her dollies.

By the time he came home the second time, she was checking her 'babies' toes for oxygen levels, changing their diapers and being sure to use up all of our wipies to ensure that the dollies' bottoms were nice and clean, feeding with bottles, rocking them to music, and rarely letting her 'babies' out of her sight.  When her little brother showed up, Courtney was a very experienced big sister.  She's more than  happy to hug and hold her brother, bring diapers, help with changings and choosing out clothes, and making sure that he never ever cries.  Because if he does (even in the middle of the night when she's in a dead sleep) she begins to cry and panic, worried that her little brother might be in pain. 

Yes, our rough-and-tumble little Hellion has had a change of heart.  She has metamorphesized into a vivacious, strong-willed big sister/protector that has learned to use her powers for good.  She willingly and lovingly spends her days watching over and protecting her little brother to make sure that he is never in pain and has everything he needs to be happy.

KC and I have often wondered for what purpose Courtney was brought into our home at such a time in our lives - 10 years after the birth of Nathan, especially when we were so sure that we could have no more kids.  Then, to have not one miracle babies but TWO?  Just spend a few minutes in the presence of Courtney and Jacob and it won't take you long to realize that she is here to pave the way for her brother, to protect him, and care for him during his journey through life.  And for a job as important and demanding as that one, she has just the PERFECT personality and mindset for the task.

I guess KC and I will just have to give her a little slack and try not to temper her personality quite so much then, won't we?

Mommy Dearest

Now Jacob is no respecter of persons.  He doesn't care if you're Courtney, a 20-month-old toddler who has a propensity towards screaming at high pitches and doing a hard-core head banging dances to whatever music is on the radio (provided she doesn't jump on him).  He doesn't care if you're some stranger dropping by to say hello.  And he even wouldn't care if you were some big shot like the Pope or the Queen of England.  He treats everyone the same.  He quietly endures us all provided we don't do anything to hurt him or annoy him.

At least I thought this was the case with Jacob until this evening.  For the first time ever, Jacob showed a preference towards someone.  The boy doesn't even really smile yet - on purpose anyway.  He just goes about his business happy to be held by whomever chooses to pick him up and love on him for a few minutes or hours.  It's all good to him.

This evening after his evening round of medications and the standard gag/puke/gasping fit, Jacob was laying in KC's arms and I came over to check on him while he was in his fathers very-capable hands.  As I began speaking to KC, Jacob turned his head, looked at me, and proceeded to push off KC's arms and twist his body towards me almost twisting out of KC's hands.  For a little boy who doesn't even have the muscle strength to hold his own head up yet, Jacob seemed awfully determined to be in the arms of his mother.

Of course I was MORE than happy to comply with his wishes and we proceeded to have several minutes of mother-son bonding.  How could I not?  His wish is my command and that darned little boy has me wrapped tighter and tighter around his little finger each day he's alive! Ah yes! It's good to be mom!