Friday, January 21, 2011

Little Jacob is Itsy Bitsy, Teanie Weanie

This week was filled with doctor's visits.  But this time not all of them were for Jacob.  Courtney got her 18-month check up with the doctor which meant shots (lots of them!) and her height/weight measurements.  She weighed in at just under 30 lbs and 35 1/2 inches. This means that she is in the 95% for both height and weight for her age.  But if you look at her, she looks and acts more like a 3 year old than a 20-month old.

Courtney is our third child.  Elisha (now 15) always seemed to come in around the 95% mark for all of her check ups and now measures in at a modest 5'10" - perfect for volleyball, her favorite sport.  Nathan (now 11) was totally off the charts - in fact, at 5'5" in height - he ranks in somewhere around the 110 - 115% mark.  I figure he'll be taller than I am by the time he turns 12, and he'll outgrow Elisha probably the year after that.  KC and I figure that at the rate he's been growing all his life, he may very realistically break the 7 foot mark, or get REALLY close to it.  It's darned near impossible to keep that boy clothed at his rate of growth.  Taking Elisha's numbers into account growing up vs. Courtney's, we figure our little darling will break 6 feet when she's done growing. 

Then there is Jacob.  Sweet, sweet Jacob.  Seeing Courtney's numbers piqued my interest so I went and found a growth chart to find out where he stands in his rankings for his age.  At 11 lbs and 22" He's hovering right around 10%.  At that level, he will be lucky to reach about 5'5" or 5'6" by age 18. Woohoo! That means that I won't be the shortest person in my family!!   I guess we short people will have to stick together, right? :)

On a more sober note - we met with the early interventionists for the second time to see how Jacob is fairing developmentally and to go over some of his assessments from his first visit.  As expected, he tests well under the national average, but that is to be expected for a baby with Downs.  What I didn't expect was that we had been discussing his feeding during general conversation and I had explained how Jacob's gagging had gotten worse.  I demonstrated with a binky how he gags if you just put the binky to his mouth and all I got was a "Whoa!" from all three ladies. Apparently, he needs a feeding study done on him and there are entire departments that are devoted to this!  Sooo, I will add the feeding study to my list of things to research for Jacob.  Good think I quit my day job! :)

Tuesday, January 18, 2011

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.