Reality Bites

It's finally hitting me (and hitting pretty hard) that there is going to be something wrong with Noah. We can "fix" all we can but it's never going to be enough.

I'm running out of excuses for why he isn't doing things.

First, it was being premature. But being premature doesn't necessarily keep you from developing and doing typical baby things. Second, it was the SCT and surgeries but there are many kids with SCT resections and they are just fine. Third, it was reflux. We couldn't work him hard enough and position him correctly to do all the therapy he needed because he always threw up. Last, it was seizures. The electrical storms constantly firing in his head kept him from learning or retaining new information.

So we went down the checklist of ailments and managed them to the best of our ability. Tonight I find myself sitting here scratching my head trying to figure out for the life of my why my little boy won't smile or reach for a toy or acknowledge me or miss me when I walk away or cry when he's hungry or love me back in a way I recognize. And the reality of our situation is slowly sinking in like a knife being pushed into my heart.

Because as of now, he just ran out of excuses of why he can't. So, why won't he?

New Year's Rockin' Eve

While things aren't happening as quickly as I'd hoped (developmentally) they are definitely improving. The weather is getting nicer and we are able to get outside more and more. I just want Noah to start doing STUFF! GOOD STUFF (not seizing or throwing up; I always feel like I have to cover my bases when it comes to asking for things!) like reaching, smiling, chewing, you know, normal baby stuff! I am just never satisfied! I just keep pushing and most times pulling for more.

Now for an update on the recent doctor visits:

MRI: No changes! WhaHoo!

AFPs (alpha fetal protein level which is a tumor indicator): DOWN DOWN DOWN from last time! THANK GOD!

Surgeons: Satisfied with progress so far. Surgeon 1 we will see in a year and have another MRI. Surgeon 2 hopefully we won't see again (nothing personal!).

Urology: The "ball dropping" isn't just for Dick Clark on New Year's Eve (my very poor attempt at humor). No-man does have a testicle that didn't descend so they have to go in surgically and bring it down. This surgery is scheduled for April 12th. YES folks, ANOTHER freaking surgery. Whatever! SO SICK OF THE HOSPITAL! But hopefully this will be it for a while.

Keto Team: Pleased with progress. Will talk about weaning meds at our next visit in 3 months if our little man can manage to maintain seizure freedom.

Eye Doc: Wants to see how No progresses and hopefully with head control, eyes will improve. Keep fingers crossed!

That's about it, I guess. Three days is a long time to spend running from floor to floor at CHOP but it was SUPER nice to have my NICU friend come along for a day. Thanks Amy! We are so happy to be home and getting back into our routine.

Please Forgive Me

I didn't realize it's been SO long since I've posted.

I think it's easier to post when things are rotten or fantastic but posting when things aren't exactly like I expected is a little more difficult.

Noah is still retching and gagging after feeds and it makes me CRAZY! I feel terrible for him and am so worried he'll develop an aversion to eating or blow his internal sutures. I do my best to help but I've resorted to constantly having a bulb syringe in hand to help him out with secretions. I feel like I'm sucking the life out of him but his secretions are so copious and thick he just can't deal with them on his own and that makes the gagging and retching even worse. I envision him one day running for the door at the mere sight of the thing (sound familiar, Mom?).

We go to CHOP on March 1st for an MRI and a visit with Dr Hero and Dr Hero II (1st surgeon and 2nd (2nd being our newest hero since he has enabled us to go out as a family for walks, weather permitting and it has been food for my soul!). March 2nd is a meeting with the Keto Team (also our heroes for obvious seizurey reasons) and we have an appointment with Noah's Urologist (to discuss pending surgery). March 3rd is an appointmet with the Opthamologist, Dr M who we haven't seen in about a year and am anxious to hear his opinion on Noah's vision capabilities.

**Amy, can we manage a visit sometime in here? Let me know. (FYI: Amy is a woman we met in the NICU and her daughter had an SCT too. Immediate Soul Sister!).

We had a most excellent visit with Tracy, Jeff, and Baby Colin. OMG! My new nephew is ADORABLE! They almost didn't make it out the door with him! ::Smile:: Their visit recharged my batteries more than I expected.

I think that is about it. We are expecting some equipment to help Noah with standing soon and I am excited. It's been SO VERY nice to play with him and read and not carry around a bowl to catch the last feed coming back to haunt us!

All in all things are definitely better and I'm just left wanting MORE! Give me an inch and I'll take a mile!

1 week post op

Okay, so a week ago Noah was in the ICU with an anesthesiologist bedside debating on reintubating our little rockstar.  His O-sats were low and he was REALLY working on the whole breathing thing.  Not surprisingly, our little one pulled through without the extra "help".  It was ugly but he got it done.

With that in mind, today is a ton better!  Either I'm getting used to everything or things are actually settling down. Noah is still gagging and retching during and after feeds but it seems like it's not as much.  The Doc did say he'd have to learn how to eat again after the swelling goes down and he starts to heal.   

Time will tell.   My hopes are back in the stratosphere again.  :)  Man, it doesn't take much does it!?!

Thanks for the lovie words, many prayers, and support.  We are hanging in there and the people who love us so good are a HUGE reason we can keep fighting the good fight.   

Pops is going in for a new knee on the 10th.  Please pray for his speedy recovery so he and Noah can make their mini hike to Pete's Lake this summer (Dad, it is on the calendar for July 8th!).  Good luck and we LOVE you!!!

Surgery Update

Well, it wasn't an overnight success.  

I don't know what I was thinking.  Guess I was picturing feeding Noah after the Fundo and actually being able to relax, see him enjoy meals, and relaxing himself.  Maybe leave the room for a few minutes without worrying something terrible is going to happen.

Not the case.

It's worse than before.

Now after a feed there are bouts of retching and gagging (2 of the 3 things he SHOULD NOT be doing).  Then there's the coughing and sputtering.  It's awful.  Now we not only have to worry about aspiration, we have to worry about him damaging the procedure.  

I am so disheartened.  I'm afraid we made a HUGE mistake.  

It's got to get better, right?

EEG Update

So....we just got an email from Dr L about Noah's EEG.  

During the 20 minute test there was... get ready... NO SEIZURE ACTIVITY!  

Such great news!  

We didn't expect to get a result like that.  Just so grateful and excited right now.

Working on weaning Noah from oxygen.  He's had a partial meal and tolerated it exceptionally well.  

Keeping fingers crossed things keep going in this incredible direction.  

I have to go jump up and down and scream from the rooftops right now.

Bye! 

Fundo is no Fun...doh!

Well, as usual things are never easy for us...

We got to the hospital bright and squirrelly and things were going well.  We went into pre-op for vital signs and to have the "talk" with all the docs about complications and whatnot.  The standard yadda yadda we've gone through before.  Only THIS time there was a little snag.  Seems our little man wasn't carrying enough oxygen in his little red blood cells causing a low oxygen saturation.  The first (yes, first) anesthesiologist (who was as sympathetic as ice cubes and had the bedside manner of a turnip) refused (you heard me, REFUSED) to put him under for the operation.  WHAT?!?  AND she was  so mean about it.  This caused many tears on my side and pleading with our surgeon to do it anyway.  Please fix our little boy!

See, Noah NEEDED the surgery.  He wasn't going to go home and get better...he was on his way to getting sick (really sick) from throwing up so much and inhaling small amounts into his lungs (this was confirmed by a chest x-ray).  Our surgeon (God Love Him!) advocated and really went above and beyond (he really felt that Noah needed this done ASAP) and found an anesthesiologist who would take the risk and go ahead (God love him too!).   

Noah got his procedure done (It's called a fundoplication).

We are in the ICU and he's hanging in there.  He's been working really hard to breath (scaring the daylights out of us) but that's pretty normal for him after sedation or general.  I keep reminding myself about that.   

He's had an EEG done and we are waiting to hear about that too.  

We had a very very unhappy roommate last night (actually a Haiti earthquake victim and her mother).  She's since been moved to a private room.  So far we are alone here but that could change pretty fast around here.  

That's it for now.

Thanks for the prayers and sweet words of support.  Please continue as the hardest part is the eating!