Uncommon Baby

Sorry to leave everyone hanging- we have Laura's family in town and it was my birthday yesterday (it was great!) and we just didn't get a chance to blog.

Laura has a consult tomorrow with the surgeon re: removing her gall bladder. Her infection seems to be getting better because she's less uncomfortable so we probably have some time until she needs to get it out.

Simon had a cardiology appointment today and Laura managed to get a consult with the surgeon who would do his G-tube. The surgeon had a little come to Jesus with Laura about the seriousness of the surgery. Here's Laura:

Hi all

Sorry to be lax on the blogging as of late but it's not my fault. Talk to my Gallbladder.

Shimmy and I arrived at CHO at 9:50 ready for our appointment. While waiting for our first activity (the Echo) Simon was pretty happy and excited with his tongue sticking out in all kinds of directions. He also got to watch a full 10 minutes of animated dinosaurs on the fancy plasma TV in the waiting room and was loving it. He was amazingly relaxed through is echo and Sarah the tech let me know that really there was no obvious difference. (However, Dr Casey, who popped his head in to say Hi said "looks like there might be more of a wiggle there eh?")

We then headed back to cardiology and were almost immediately put in a room to wait for Howie (Aka HunkyPants/ Rosenfeld). We had to wait almost 20 minutes (what? Like he has other patients??) and Simon got weighed (18 pounds 3.5 ounces my friends!!) and then proceeded to go crazy with excitement at getting to play with those eye and ear checker thinger magigggers. He was cackling up a storm, rolling his tushy off, smacking his lips with a kissy sound, and generally having more fun than any cardiac patient ever should at an appointment. Luckily Howie got to witness the last little bit of it (he found it terribly endearing that Simon was blowing him kisses and I didn't have the heart to tell him that it wasn't really a kiss specific to him) before we went for the 'Oww' part of our visit.

But before I get to that, let me tell you the most exciting part of our time with HunkyPants. He said that Simon was looking so good and that his weight was firmly in line with his height so.....we could start playing with his feeds and see if we could get the little man hungry!!! Yay!!

So tonight we are just giving him pedialyte and seeing if he'll wake up hungry enough to suck down some formula, nibble some avocado, or slurp some cereal. I'm a little nervous about it. Isn't that crazy?! I give my son several different medications that could potentially harm him if not given correctly and I'm worried about trying to give him food. Well, it has been months (except those weird days after his last bacterial infection) since he's taken anything by mouth AND it feels like the last frontier in terms of getting Simon deeper into "normal baby" life. I get why I'm feeling like it's so charged and it seems weird to me.

On to Lab draws. They suck and I hate holding him while the very skilled nurses try and try to get blood from my small veined son. This time only took two tries and the most amazing happened during the actual blood draw.

Shimmy was screaming his head off, tears falling down his sweet little face landing on my hand that is holding his small body still, while Trudy filled the numerous vials for his numerous tests. At one point, with the needle still in, Simon's attention was caught by the movement of the 2nd nurse changing the blood filled vials for empty ones. For a solid 4-5 seconds Simon stopped crying and simply watched her move the deep wine colored vials around. It was incredible.

I told him "yeah, it's ok to be distracted and really once the needle is in, it doesn't really hurt, it's the going in that hurts." At that point Trudy had to move the rubber band around his arm and the wailing and tears started up again, with good reason I think. But, it was an incredible moment of Simon being aware of what he was actually feeling and not just riding the wave of what had transpired. Very cool in my mind. Again, his bounceback was almost immediate once we were done and he almost smiled at the nurses as we waved goodbye and thanked them for the most unpleasant job that they do really well.

We then headed across the street to outpatient services to meet with Dr Su who will most likely perform Shimmy's G-tube placement surgery. While we were waiting to meet with her (it was an impromptu consult that she agreed to over the phone- she was on call and not in her office) Simon fell asleep and I covered him up in the stroller with a blanket. She came in and we started starting quietly as to keep the little man asleep. It was already 1pm and he was completely off his rocker with exhaustion.

Dr Su started in right away with some very clear concerns. She said that she'd talked to Dr Gleghorn and Dr Rosenfeld and while she heard from them that they thought Simon was a fine candidate for such a surgery she "really didn't want to do it."

She went on saying that she'd seen his Echo and remembered him from the ICU (she was the surgeon to take out his Broviac line when it was infected) and was very worried about how sick his heart was. She went on to say that any surgery right now given that was a serious risk and that the worst case scenario was that being put under anesthesia could kill him.

Words like that make my heart freeze and feel leaden in my chest. It wasn't anything that I didn't know or that Jaime and I have talked about but she was no joke and shooting straight from the hip. She went on to say "Dr Gleghorn and Rosenfeld told me that they don't think it such a big risk and that really I needed to see him and meet with you but I have to tell you what I think." On she went, "They both told me that I shouldn't put so much on the Echo since nobody thought Simon would be around this long especially after you both opted to not go the transplant route but here he his and not only here he is but he's doing so well...."

(This came up more than once in our conversation- I don't know if I hate hearing that or love it).

At this point Simon started to wake up and start fussing. I removed the blanket covering him and picked him up from the stroller into my arms. "Oh my, he looks good!" were the first things out of her mouth when she actually saw him. "He's gotten so much bigger and his cheeks are so big and full of color." She went on and on cooing in his general direction (you gotta remember the last time she saw him he was bacterimic and almost buying that farm that he's been toying with purchasing for over 5 months). She said that given how he looks and acts, we could move forward with meeting with a cardiac anesthesiologist and scheduling the surgery but with a couple of weeks of seeing if we could get Shimmy eating by mouth that hopefully we might not even need to put in a G-tube.

The little man works his magic again!!

Later in the evening Dr Gleghorn called to check in on the progress of scheduling the surgery and when I mentioned the whole 'maybe not needing it if we can get him eating' thing she said, "that would be uncommon for a patient to be able to get back to eating." I said, "well, he is an uncommon baby" to which she replied, "well, yes, given his history, he certainly is".

Like I said before, it's both wonderful and hard to hear that. Especially coming from medical folks that really know what they're talking about. Simon is so alive right now, in his body, in his energy output, in his wiggly tongue AND he is not that far from being just the opposite. His heart, held so carefully in his beautiful strong little body is still very, very sick. It's hard to reconcile his amazingly strong legs and arms, head and neck, great grasping hands and curling toes with the idea of a stretched, weak, inconsistent but so very essential heart muscle.

He is an amazing being that keeps everybody around him so viscerally holding the notion of balance. In every moment there is light and dark, sweet and sour, joyful and sorrowful. I love him so fiercely for that and so many other things.

Today's highlight was the teething biscuit. Check it out:

Love to all

laura