4th of July Weekend and Beyond...

My goodness, where to begin? I actually started posting my entry last Sunday, but couldn't finish. Now that I finally have some time, what a different entry it is today compared to last Sunday. Without writing a book (although I think I could), I'm going to try and pare down the info and provide a Cliff's Notes version, if you will. Even then, this will be a lengthy entry:

4th of July weekend: Our little firecracker decided that the excitement of 4th of July needed to be ramped up further. Here's what he had in mind:

1. It started with Colin's first real fever last Tuesday (before the 4th). Slowly his temp crept upward (even with Tylenol) and on last Thursday we took him in to get evaluated. It didn't help that when the pediatrician came in, Colin started smiling and playing around! So much for being sick! But we at least saved a little face when he measured 103. Anyway, we were reassured that his fever would break in the next day or two, and sure enough, late Friday, he was back to a normal temp.

2. Fever broke (yes!) but now Colin breaks out in a full-on upper torso rash (no!) on Friday night. Due to a food allergy since we just switched his formula, or the virus, or other? Likely virus, we now understand, but lovely none-the-less. It went away after a few days.

3. Colin's oral aversion (or so we thought at the time - I'll explain in a moment) had gotten to the point that he just wasn't taking in a lot of food. This was illustrated in his weight non-gain, or plateau. So we inquired about alternative formulas, or anything else the doctor could advise us on since we were now desperate and pleading for help. We discontinued breast milk in favor of Alimentum (pre-digested formula). Since making the switch, Colin hasn't been eating any more than before (in fact less) but he's also not throwing up either. So the net result isn't bad (relatively) in terms of food volume. Still way below what he should be eating, but still.

4. Starting on Saturday night Colin started having bradycardias again. What? After almost 3 months of no episodes, he starts this up again? Is it from his virus? The machine malfunctioning? This only got worse on Sunday night, prompting many phone calls to the pediatrician Sunday night and though the night. We were scared for our little boy. Turns out we didn't need to be as we later learned (again, just building to that).

5. To make these series of events even worse, Colin decided to REALLY scare the ______ out of me. I placed him on the sofa as I've always done, and walked into the kitchen to prepare his bottle. I need not say another word, and parents already know where this is going. Not 10 seconds later, I hear a thud and a wail. My heart stopped. I rushed immediately over to him (laying on the floor now - not the sofa where I placed him - but on the floor - face down mind you). I picked him up and began wailing like my son in between my efforts of trying to console him. 30 seconds later, Colin was calmed down. 10 minutes later, so was I, only after squeezing every square inch of him to make sure there were no sore spots (breaks, fractures), which there were none. Tummy was soft and not distended, pupils were normal. Man, did I go down the checklist. Since sharing this story with other parents, I've elicited many a laugh since I now know that ALL babies fall/crack their head/scrape their knee - you name it - no matter how careful we as parents are. So my son's 18" crash to the carpeted floor was a relatively easy first fall, but I'll also never forget it.

6. Colin's core temperature was dropping really low starting Saturday night and Sunday night as well (96.7) and he was cool and clammy to the touch. We were advised by Colin's primary nurses back in the NICU to wrap him thoroughly to bring his temp up before jumping to conclusions and rush him into the pediatric ER. This ends up proving to be a blessing in disguise.

So, that was our weekend. Anyone jealous of how much excitement the Hamps had? :-) I'm only getting started!

Monday morning, Colin goes and visits the pediatrician. Their assessment: admit him into the hospital, that something just wasn't right. Oh boy, one of the items on our fear list - going back to the hospital. 4 months of hospital that ended just 4 months ago will do that to you. But we had no choice.

At the hospital (Levine Children's at CMC Main) we are initially admitted under the premise that Colin is just under observation for the night. I laugh at that now since I'm sitting here 4 days later in the hospital as my son sleeps typing this entry with no promise to leave any time soon from the doctors.

As the days this week progressed, we had a series of ups and downs, recommendations that were black, then white, then mostly gray (what else is new and where we're still at at the moment). Without going into too much detail since A) it's just too much and B) I'm frankly, just too tired to do it, here's where we're at today:

The bradycardias were not. His heart rate did drop, but dropped below where the machine was preset - the levels when he left the hospital at 5 pounds. Now that he's a little older and bigger, the norms should have been adjusted. So, false alarms, thank goodness.

A myriad of tests including CT scans, x-rays, swallow studies were all normal. Even the Feeding Therapist on staff said Colin is not even orally averted! Really? Every one else thinks he is. But the therapist brings up a good point: orally averted babies don't even allow food in their mouths - or anything for that matter. That's not Colin. He almost always starts off well with a bottle, he just doesn't eat much, and he also puts everything in his mouth. So, Colin just doesn't like to eat. Call it what you want, he just doesn't eat. And THIS is what explained Colin's core temp dropping at night: he is malnutritioned and can't maintain his body temp at night. Not a virus - malnutrition - despite our tireless efforts to feed him. A blood level called pre-albumin reveals this fact. And so this has FINALLY become the focus of the doctors after 2 solid months of us crying out that this is a major issue for him.
As a result, Colin now has a feeding tube in place - a ND tube (from nose to duodenum, which is below the stomach). We feed him via bottle, but instead of 1.5 hours or so that it normally takes to feed him, we give him 20 minutes only. Whatever he doesn't take in 20 minutes, the balance is placed in the tube. He must take a minimum amount per feeding, which now stands at just over 3 ounces per feeding, 8 times per day. He's been nowhere near that volume to this point. The idea is to feed and grow (how novel) until he figures it out on his own. If he doesn't, the doctors are recommending a very serious surgical procedure that I am adamantly opposed to (at the moment). When I realize there is no other option, that's one thing, but I can't even imagine putting Colin through that (basically they place a tube directly into his stomach through the skin, fat and muscle above the stomach and along with that do what is called a fundoplication, where they wrap the top of the stomach - the fundus - around the lower esophagus, stitch it in place 360 degrees and tighten to create a smaller, tighter opening to discourage reflux from occuring). There is a whole host of complications with this procedure, including death. So at this point, there is no way in hell I'd okay this surgery. I'm intelligent to know that I may not have a choice, but this is a LAST resort only.
So, I've proven that I'm not a good Cliff's Notes writer. Better at novels ;-) But I ask all of our wonderful friends and family to continue to pray for Colin. He continues to need them. They've worked before, and I believe that they'll work again. Thank you to everyone for your ongoing support. We love you all.