Saturday, January 29, 2011

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 - 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! ;)

One for the Road

T minus 4 days until surgery and Jacob decided he needed one more visit to the emergency room before his surgery. 

Luckily, it wasn't for anything major.  On Thursday morning I was doing the Elisha to seminary, come home, and if Nathan is extraordinarily generous (and he usually is - the sweetheart!) he will take care of Courtney while I get and extra 1/2 hour's sleep.  Then the a.m. frenzy of feeding the kids, getting everyone ready for school and the day, loading everyone into the suburban and getting Nathan to school. 

After dropping Nathan off, I came home and was beginning to clean out the suburban (yes, occasionally I do clean) and heard a little coughing sound from Jacob in his car seat.  I went over to check on him and he was in a full-blown gag-and-vomit fest.  As I hurried to get him out of his car seat he proceeded to vomit about 2 oz. of formula.  Funny thing is, he hasn't been eating anything orally in days, and his feeding tube bypasses his stomach and goes directly into his intestines. 

It didn't take long to figure out that his ND (Nasal Duodenal - ie. goes in through his nose and into is duodenum which is located in his intestine) tube had dislodged and was spilling into his stomach. So, I called the pediatrician's office to let them know his ND Tube had dislodged and to find out if they wanted me to go in that day, or if I could wait until Friday when I would be in for his pre-op. A few hours later one of the nurses called and said that I needed to go in that day.  So, as soon as KC got home, off we went to the emergency room to have Jacob's ND Tube taken care of. 

We went in, they X-Rayed him and guess what? You guessed it.  The Tube was dislodged:
Jacob's tube - just barely in the top of his stomach

They showed us a copy of what his tube had originally looked like in his stomach when they put it in the first time:
By looking at the picture, you could easily tell that the tube had originally gone into his stomach, looped around and then into his intestines.

But the new photo (top) showed a straight shot to the top of his stomach.  All KC and I could ask was, "Where'd the rest of his tube go?".  Come to find out that the ND tube is labeled with numbers so that you can gauge where the tube is in the body.  The first time, the tube at the opening of his nose was at "46".  But, when we brought him into the hospital on Thursday, it was at "22".  Apparently, without us even  noticing it, his tube had been gradually migrating out of his nose over the course of the month and had essentially come out by about 8". 

Luckily, we had a great doctor in the Emergency Room who was able to re-insert his tube right there on the bed in the room - no anesthesia, and only a couple short minutes of crying by Jacob.  Radiology double checked that it was inserted, and then they sent us on our merry way.  We were in and out of the hospital in a lightning-fast 4 hours!!!  And, with no pokes!!! :)