Visiting the Cardiologist

This week was heart week for Jacob!  It had been 18 months since he'd seen the cardiologist and they wanted to do a checkup to make sure his ticker was still working properly.

We had planed our echo cardiogram for 11:00 a.m and then were scheduled to see the cardiologist at 12:30.  I knew we were in for a loooong day - especially since it's a 30 minute drive to see the Doctor.  So, at 10:15 little Jake and I were off to see the doctor! I had a bag filled with books, treats, videos, and a mental list of things we can do at the hospital where the cardiologist is located (since we're so well acquainted with it from past years!)

We show up at the cardiologist and Jake hit full-blown flirt mode!  He made his rounds to each of the little girls in the waiting room, then started flirting with the ladies at the desk, poking his head around the monitors to grin at them and wave.

He was all giggles and smiles until he took one look at the echo room - the bed,the monitors, the machines.  He didn't even walk inside before he totally freaked out.

Now, I expected him to be less than thrilled about an echo, but it has been more than 3 years since his heart surgery, and he's only had 1 other weekend stint in the hospital since then.  A full on melt-down was not anticipated.  But he looked like he was have a serious case of PTSD or something.

I had to pick him up, wiggling and wailing, take of his shirt, lay down with him on the bed, and physically hold his arms, legs, head and body while the poor technician tried to echo his heart.  30 minutes later, the technician gives up, telling me she's gotten as much as she's gonna get on my son.

We leave the room, both Jake and I looking like we'd just run a marathon.  I wish I'd brought another change of clothes.  Gah!

We head out to the shocked faces of the ladies at the front desk and are informed that we have 1 hour before we can see the doctor.  Undaunted, I tell them I'll see 'em in an hour, and take my son out to roam the hospital.

We stop by the Ronald McDonald House so he can talk to Ronald and give him a hug, then we go to the fish hall to listen to the fish, and check out the city from the sky walk.  Then, we went and had lunch in the cafeteria - which was quite exciting because there was no high chair and Jake was still grumpy from his appointment.  So even the dessert wasn't interesting him that day.

Finally, an hour later, we find our way back to the Dr's office and are called back.  The poor nurse tries to check his heart but all of Jake's happiness is spent so he just keeps swatting her away and insists on climbing up giving himself googly eyes in the giant mirror next to the examination bed.  But the sweet woman takes it in strides and goes to find the Doctor.

He walks in all smiles and sass (have I mentioned I like this doctor?) and tells me he's been getting lots of comments about how Jacob is full of 'energy'.  Laughing, I agree that his description is the most politically correct way of saying he's crazy active today.

Jake was nice enough to let the doctor listen to his heart for a minute, but nothing else.


And the prognosis is:  He sounds GREAT!  There are no leaks or issues whatsoever!  We don't have to go back for THREE MORE YEARS!!


It was totally worth the 5 hours of hospital time to get the news.

Hangin' with the Cardiologist - Preparing for heart surgery

Today was the much anticipated day to visit the cardiologist.  We had been told by Dr. Jensen to expect to set a hard date for surgery and to maybe even meet our surgeon.  K.C. took time off from work, I found a very VERY wonderful woman to watch Courtney for the day (bless her heart!) and we took off to the cardiologist to see what fate had in store for Jacob.

Amazingly, we were on time - in spite of the snow and leaving the house 20 minutes late.  In past visits, we usually got to wait in the waiting room at least 45 minutes to an hour before being seen.  Today, I think we were in our room in less than 10 minutes.  We were greeted by a warm, friendly nurse who proceeded to TRY to get his blood pressure (to no avail! - he just wiggled too much!) and to check his oxygen levels -still hovering around 90-91%.

We were whisked down the hall to check his weight - a whopping 10 lbs 2 oz. and then across the hall for his echo cardiogram which told us that he has only a slight leak in his valve. This apparently means that repairing his valves will have a much higher likelihood of being successful the first time around.

After that, we had the "too many cooks in the kitchen"  experience again.  This doctor wanted to have surgery in 6 - 8 more weeks rather than Dr. Jensen's 2 weeks.  She also upped Jacobs formula mixture to 28 calories per ounce and his intake to 28 mls per hour (even though Dr. Wagner had been excited by his weight gain 2 days earlier - "not too much and not too little").  K.C.  politely but firmly informed this doctor that we had been told to expect 2 weeks for surgery and she complied with his request.  A consultation with the surgeon has been set for next Wednesday.  We will meet with him, he will check Jacob out, and he will choose a time in his schedule for the surgery.  After that, we will meet with the cardiologist the day before surgery for a panel of blood tests, another echo cardiogram, and a series of other procedures.  From the sounds of it, this will take several hours.  I'm not sure whether to be excited that Jacob's surgery is finally here or to be scared out of my mind.

It helps to know though that in spite of the communication quirks, we really ARE working with an amazing group of doctors and specialists.  I know that Jacob will be in good hands and I've been told by many that our doctors are some of the best around. 

(Jacob on the way to visit the cardiologist - checking out the new snow fall!)

As I sat contemplating what we had in store for us over the next couple of weeks, I couldn't help but notice how much my baby has changed even in the last few days.  He has finally begun to grow hair, he has gained control of his hands and uses them often to bat away our hands as we try to give him his Prevacid orally, and he's so expressive with his eyes and mouth.  It's like he's come alive!  He's checking everything out around him and has cut his sleeping time in half.  We've even caught him trying to roll over - and almost succeeding - a couple of times!

I find myself unable to resist picking him up for no apparent reason and just looking into his big blue eyes, marveling at what a fun personality is beginning to emerge from his tiny little body.  His zest for life. His ever-present patience with us (you'd think we were first time parents with the way we bumble around with him!) and those around him, his amazing curiosity to see everything around him, and so much more.  I know that life as we know it is just a hiccup.  Jacob will be scurrying around with us in tow in just a matter of a few short months and all of this will be just a distant memory. 

Oh, I can hardly wait!!!

Miles of Smiles

When all is said and done, today can be considered one of those good days.

Last night I pulled an all-nighter (Yep! Not a wink of sleep!) trying to finish Christmas presents, working on GAINs (assessments) for my sister, taking care of Jacob, and even trying to squeeze in a little bit of house cleaning along the way.  But today was the day we got to spend with the cardiologist going over Jacob's progress and discussing his heart surgery.  This was supposed to be a Dr. appointment that would last at least 2 hours long, so if I was going to get anything done it had to be while the family was sleeping. 

Our appointment with the cardiologist had been set weeks ago and we had even received a packet in the mail reminding us of our appointment, which I diligently filled out in anticipation of our visit. I started getting Jacob ready for the appointment at around 6:30 a.m. - bath, re-dressed his ND tube, got him dressed, packing his diaper bag, etc.  When we showed up at 8:30 a.m. the first thing out of the receptionist's mouth was, "We have you scheduled for 11:30 a.m.".  I looked at her and said, "No.  You have us scheduled for 8:30" and tossed her the paperwork, complete with the scheduled time on the front page, to her.  She looked at it and said, "Oh.  Hmmm".  Apparently they had 'lost' our appointment.  So, they had to scramble to find a way to fit us into their day.  We were told, "You're lucky! The doctor's next appointment is running late so we can squeeze you in!"  Um, no.  Apparently these ladies had no idea what kind of bullet they had just dodged.  I had not slept the night before, I had not eaten yet, and I was on my period.  Strike 3.  You're out!  Out of patience, that is.  With those three factors in play I was in noooo mood to play nice this morning and those ladies were darned lucky they didn't try to make us go home (which is a 30 minute drive, by the way) and have us come back in a few hours. 

So, we sat down and waited to have Jacob's name called......and waited....and wait...and waited.  45 minutes later, they finally called us. We got to weigh Jacob and he was up to 9 lbs 13 oz!!!  Just a few more ounces to go until he reached his 10 lb goal! The nurse did an EKG, which took longer to put all of the stickers and monitors on than it did to do the actual test!, took his blood pressure, measured his oxygen levels, and asked about his medicines.  Then we waited....and waited.....and waited some more for our doctor. FINALLY, he came into our room and sat down to talk to us about Jacob.

He asked us about his medical history and hospital visits, problems with feedings, whether he was getting the RSV shot, etc.  He asked us what our expectations were with the heart surgery, etc. He explained to us that he believed that Jacob's feeding issues were not going to go away any time soon and that lots of people usually have a surgery to close off the esophagus and put a feeding tube in through his stomach before they do the heart surgery, which is a much more permanent solution to his reflux.  I told him that I'd been told that Jacob would grow out of his feeding issues eventually and that I was prepared to wait it out rather than do a surgery to put a tube through his abdomen into his stomach permanently.  He was not too keen on this idea stating that he is an impatient man and that he doesn't like to wait for things that take too long and said that we could probably wait 6-8 weeks and if he isn't improving by then we should get the surgery done.  I still was not sold on the idea of creating a permanent solution to something that may resolve its self in time - especially a solution that resulted in feeding Jacob through his stomach for the rest of his life.  So, I'm opting to be very very patient with his feedings.

After much discussion, the doctor convinced us that it would be in Jacob's best interest to wait another 4 weeks before he gets his heart surgery.  So, we are tentatively scheduled for his heart surgery the 3rd or 4th week of January to do Jacob's heart surgery.  We will be going back to see a cardiologist in 2 weeks to choose a hard date and meet with a surgeon.  And the guesstimate that Jacob will be back in the hospital for about 2 weeks for recovery.

He warned us that this heart surgery would not make Jacob any less fragile and would probably not fix any of his issues. It was only going to fix his heart.  Hmmm.  That's not what he said at our initial visit.  I guess at this point nothing should surprise me and I should take everything with a grain of salt.  So, that's what I'm going to do.  Whether it fixes Jacob's other issues or not, this surgery is still a necessary part of his development and an essential step to his progress. So we will go forward with it.  If it helps with his other issues then BONUS! If not, we'll address each issue after he recovers from his surgery.  After our 20 minute conversation, he changed Jacob's prescription by increasing his Lasiks to .5 mg 2 times per day and sent him down to get an X-ray to make sure his heart hadn't grown too much.  By this time we'd been at the doctor's office for more than 3 hours and had a total of 30 minutes face time with the doctor and his staff.  Ugh.

On the up side, while we were waiting at the cardiologist's KC and I got to watch Jacob laugh in his sleep. It was sooo cute!

Then, later this evening we were having our nightly 'interaction' time where I'd smile, talk, and sing to Jacob to help him interact and begin working on mimicking the facial expressions he sees from me.  Lo and behold, I was grinning and talking to Jacob and he began to give me half-smiles right back at me!  Not just one random gassy smile, but several deliberate half smiles that just melted my heart! I wish I'd had my camera with me!

So, even though my day had a rocky start, I can definitely say that it ended with miles of smiles that makes all the other crud just melt away to the back of my mind.  It's the moments like that which remind me of why it is that I chose motherhood over the military and why I don't regret a single minute of that decision!

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Finding a Great Pediatrician When Your Child has Down Syndrome - What to look for

Jacob has been home a total of 4 days and we had our first doctor's appointment with his Pediatrician. They were recommended by every doctor in NICU as well as a couple of my friends who have children with Downs Syndrome.  So obviously, I had high expectations.  Aside from the the ladies at the front desk, I was really quite impressed by them.

 I met with my doctor who checked his oxygen levels (good), his weight (he's gained almost 1 lb since birth), his liver and heart (for heart failure), and an assortment of other things.  She was great about answering all of my questions and taking time with me to make sure I knew exactly what I was in store for.

She made sure Courtney got her flu shot so that Jacob would be less likely to be exposed to the flu.  Since virtually EVERYONE in our family has been sick except for Jacob and me, I asked her when I should come in should I begin to see symptoms of a cold or the flu in Jacob.  She informed me that he has no threshold which means that the first sign of sickness I needed to bring him in.

We talked about the signs of heart failure (our cardiologist informed us to expect heart failure in the first month) which includes weight loss, sweating while or after nursing, panting, an enlarged abdomen from his liver, listlessness,etc. She checked him for the signs and said he looked well.

I asked her about when to get him circumcised, and she informed me that she did not recommend circumcision before his heart surgery unless he was already going to have another procedure because it could be too traumatizing for him right now (wow!)

Then she informed me that she wants to see me every week to monitor him and his health.  Plus, she does NOT want him in the waiting room when we come to visit where he'd be exposed to the other sick children, and that she'd make sure I was immediately directed to a room in all subsequent visits. 

I left the appointment feeling like I now had a doctor that:
 1) knew what she was doing and had a lot of experience in Jacob's disability.
 2) She cared about my concerns and was happy to spend as much time as I needed to make sure I was fully informed and prepared for upcoming events.
 3) I had been WAY too nonchalant about Jacob's condition and I needed to be much more diligent about his heart defect and keeping him germ free. 

Needless to say, I am hunkering down and preparing to be a hermit for the rest of the winter.  Luckily, the darned boy is so cute I think I could spend a YEAR just cuddling and watching all of his facial expressions!  It's hard to give him up to his dad in the evening so that I can work and get things done. 

He literally eats, then sleeps for 4 hours and repeats.  It doesn't matter how loud it gets around the house, or if I need to take him in the car to drop Nathan off for school. He just sleeps through it all and wakes up just long enough for me to feed him again.  Needless to say, it makes getting things done around the house MUCH easier! :)  How was I so blessed to have such a relatively easy baby? ....OK, aside from all of the doctors appointments I will apparently be having each week!!!