Operation Day!!!

Wow! It's been a long, emotional day for our family.  KC and I got up at around 4:00 a.m. and got ourselves and Jacob ready to go so that we would be at the hospital by our 5:30 a.m. check in time.  We made sure to dress him in his "Fix Me" onsie that his darling big sister, Elisha made for him:

Needless to say, it was an absolute HIT! The heart staff loved it! 

It was an often surreal moment for us as we finally got to meat with the nurses, go through all of our paperwork AGAIN and remind the doctors that, yes, we did want him tested for hyper coagulation (he tested within normal parameters) and yes, we wanted to make sure that he would be VERY sedated after surgery.  

We joked over the size of his file (now well over 5 inches thick - impressive by even the hospital's standards, especially for a 3-month old!), held Jacob for a few more minutes, and kissed our patiently wide-eyed infant son good bye as the hospital staff wheeled him away to be anestesized. 

Then we were done.

Our arms were empty, our hearts, full of anticipation and hope, and minds racing with all of life's 'what if's' imaginable.  All we could do was wait.  And wait. and wait. 

Finally, 4 phone calls and nearly 5 hours later, we were met with by both the cardiologist and the heart surgeon.  Both said that the operation went smoothly, his holes were patched, and his valves weren't leaking.  All they needed to do was get him situated in PICU and we could see him in a 1/2 hour.

Now, the cardiologist, the surgeon, and various other doctors and nurses all described what we would see in the hospital room when we showed up.  I had been a rock all day, but I wasn't sure if I could keep it together when I saw my baby hooked up to everything.  When we walked into PICU there were 5 people in his room all busily working around his bed hooking him up to monitors, bags, pumps, reading charts, organizing medicines, giving directions, etc.  It was like a carefully choreographed dance with steps and props all intertwined amongst one another.  It was actually quite impressive. 

In the middle of it all was our 11 1/2 lb, 22 1/2 inch 3-month-old Jacob so drugged up he didn't know what planted he was on.  And considering all that he'd been through.  That was a GOOD thing. 

I counted.  Jacob was attached to 5 different bags, 12 different pumps, and 3 different monitors.  There was no way to count the number of tubes coming in and out of his body - it was just one big rat's nest of tubes.

I don't know how I did it, but I didn't shed a tear.  I think the knowledge that he won't remember this when he's older helped. 

Everyone said that he was doing amazingly well considering everything and discussed the idea of possibly taking his breathing tube out later tonight.  The doctors would like to remove one thing per day - i.e. the breathing tube, the central line within the next 24-48 hours, the tubes in his stomach, etc. 

We were told that possibly as soon as tomorrow we will be able hold him, and if all goes well and he continues to progress as he has, he may go home as early as this weekend or possibly the first part of next.

Here's to hoping!!!



Reflections of Perfection

Um.....yeah.  Just go with it, OK?  It's been an emotional day:

As I sat with Jacob today at pre-op in between tests and visits from various medical professionals I had plenty of time to look into his deep blue eyes, and reflect upon the 12 short weeks that he and I have had together.

What is it about this little child that draws me to him?  How can it be that after only a few short weeks I cannot imagine (or remember) my life without him? This one little soul, who has not spoken one word to me, hasn't taken a single step, or even kissed my cheek had managed to utterly complete me.

And why did this child, my fourth, do what the others have not?  Each of my other three children are absolutely amazing in their own right.

Elisha is our overachiever. When we decided to have children, she was conceived on the very first try. At 15 years old, she is beautiful, intelligent, dynamic, athletic, articulate, talented, and loved by virtually everyone.  I cannot help but be drawn to her, her sense of humor, and the sickening reality that way too many of her strong-minded personality traits come from her mother (drat!). Not only is she an absolute success at everything she puts her mind to, she has grown to become a friend to me - something I did not imagine happening until well into her 20's or possibly 30's. 

Nathan was our miracle child. After 4 years and 3 miscarriages, he was conceived. Nate is the most endearingly sweet young man I have ever met.  He never ever EVER complains and is constantly smiling. Elisha has no idea how fabulously she has it with Nathan as her little brother.  Who else would offer to clean out the kitty litter, or do her dishes and chores for her 'just because'?  What other 11-year-old boy volunteers to watch his two younger siblings so that his mom can sleep an extra 30 minutes in the morning, or would willingly and knowingly let his 20-month old sister into his room to virtually annihilate it just because he know that she loves his room and all of the things in it? I have somehow managed to have a little boy who goes with the flow and is happy as long as those around him are happy.  I blame his father. ;)

Then there is Courtney. Vivacious, precocious, witty, charming, and incredibly astute for a 20-month old.  She is the only one of my children I actually looked forward to having before she was born.  And with her, I was excited - no, thrilled- to have come.  She has this way of drawing everyone around her in.  You can't help but smile - even when you're steaming mad at the little girl.  It's quite infuriating actually, the way she has with people.  To be able to make everyone love her.  Oh, what a talented girl she is.

Then there is Jacob.  Small, quiet, unassuming.  For the most part he either sleeps, or just SITS there doing nothing.  Yet its all I can do not to just pick him up and want to cuddle and kiss and zerbert him.  I look at him and I can't help but smile a great big smile - or allow the tears to flow at the very thought of more pain ravaging his tiny frame. 

I thought about this question regarding my pull to Jacob, concerned that I may somehow love him more than the others, or give him preferential treatment.

Then it dawned on me today in the hospital. 

No, I do not love Jacob any more or less than I do my other children.  However, I have been preparing my whole life for (and ultimately anticipating) him.  In high school when I assisted the disabled children 1 period a day for gym, I quickly felt at home with the students.  So much so that I decided to become a Special Education Teacher.  Those goals were not achieved because I was side tracked with marriage and motherhood.  However, we went on to manage for 10 years (and live amongst) an apartment complex filled with persons with developmental disabilities - and my favorites were always those with Downs.  I had dreams of a boy with Downs Syndrome years before I conceived Jacob. Several dreams.  I had often wondered if those experiences in my life were all coincidence, or if they had a purpose. 

When I was told about Jacob, his disabilities and his birth defects.  It was of no major surprise to me.  Only a realization that I was not actually imagining things after all.  I had known all along that I would have Jacob.  I was just waiting for him.  Treading water until he came into our home.  And when he did come to us, to me it wasn't the birth of another child.  It was the return of an old friend back to me.  Someone I had been waiting for.  And every time I pick him up, it's like the reunion of two old friends.  I see in his eyes a wise soul with so much to tell me and teach me when the time comes.  So much to share.  I just have to continue to be patient.

So when I see Jacob, there is no sadness.  There is no fear. There is no worry.  There is only hope.  Only joy.  Only excitement at the life me and my dear friend will be able to share and experience together here on earth - no matter how long or how short that journey may be.  Jacob was meant for our family.  And this is only the beginning.


 

Pre-Operation Day!

Yep! Not 1 blog post today, but 2!  It's been a crazy, eventful week and I've had several people ask me for updates, so here you go!

Today was Jacob's pre-op day.  That means that we went into the Sacred Heart Children's Medical Center and did all of the paperwork, blood work, labs, X-Rays, and EKG's that he needed to be ready to go on Monday morning. Afterward, he had one more visit with the cardiologist to get his clean bill of health. 

I showed up at 9:00 a.m. with Jacob in hand, and proceeded to spend the next 5 hours with him doing the various different tasks and tests to prepare him for surgery. 

They did the standard weight and measuring, which showed that he had indeed begun to gain weight again now that his ND Tube was in the right spot.  Then they took us into a little room where they did 3 nose swab tests and went over paperwork with me.  Next, they had someone come in and do his EKG.  Normally, when they do the EKG it consists of maybe 4 cables taped to his chest.  This time they weren't messing around! He had 12 cables taped to various places on his chest.  But, because his chest is so tiny it was almost humorous to see this little boy with so many cables on his chest that you couldn't even see the chest anymore! All you could see were the testers and tape!

The nurse assigned to us was great.  She brought out a cute little (OK - not-so-little...it was almost as big as Jacob!!) teddy bear that had a medical bracelet on it's ankle just like Jacobs, EKG tabs on it's chests, and the nurse said they'd even be happy to add tubes to the teddy bear just like Jacob's will be when he's done with surgery.  She went on to explain that he'd have a tube out of his arm for the main arterial, a couple out of his stomach to help with drainage and air, one coming out of his mouth for the ventilator, and most likely one more for the pick line, or some such thing. 

We went over Jacob's Hyper Coagulation issues and I reminded her that the doctor had agreed to draw blood to test him for it either today or tomorrow before the surgery.  She noted that it wasn't in the orders for today, but did write it down to remind them to do the test tomorrow. 

When the ladies came in to do his labs, Jacob was true to form.  They wound up having to draw the blood from a couple of veins in his head.  They only needed 2 ml's of blood (probably less than 1/4 tsp) and it took a good 30-45 minutes to get it because they had to 'milk' his head and his blood kept clotting and wouldn't flow.  Again, the ladies were pro's and did a great job.  It was easy to tell that during the process he wasn't in any pain.  He was just mad that they were holding him down and not letting him swat at the lady who was rubbing his head! ;)

After the labs, we went over to radiology where he got a chest X-Ray.  However, this X-Ray was a little bit different than all the other's Jacob had in the past.  He needed to have the picture taken sitting up.  So, in order to get an unobstructed X-Ray, the technicians had this contraption that looked like a midget torture device!

It had a little seat that he straddled and sat on.  Then, they placed this clear plastic cylinder around his body with an opening for his face and placed his arms above his head.  Once around his body, they secured the cylinder which kept him upright and stabilized while they took the pictures.  Once again, Jacob was NOT happy.  Not in pain, but also NOT happy! Yes, there were lots of angry yells involved in this little test.  Luckily they only needed 2 pictures and he was in and out in just a couple of minutes. 



Soon afterward, they declared Jacob's tests complete for the day and reminded us to be back again at 5:30 a.m. on Monday morning.  The surgery will begin at aprox. 7:00 a.m. and his surgery is slated to last 285 minutes (4 1/2 hours).

We went back to the little room, got Jacob dressed, went up the the cardiologist who gave him a clean bill of health, and all the while, Jacob just glared at me and occasionally belted out a little yell in my direction with a bit of an unhappy snarl.  For some crazy reason, the day full of tests and pokes had put him in a bad mood and he wasn't going to let me forget it!

I couldn't help but giggle.  My sweet, mellow, little boy had finally grown an attitude and an opinion!  I guess he's got a little bit of fight in him after all!  Courtney! Watch out! You may have some competition in a few years.  Well.....OK, Courtney's still got him beat hands down, but he might give Nathan a run for his money! ;)