Journal #7 - Welcome Home, Caleb!

We missed you, buddy! 

I know I spent the majority of my time the last several days with Caleb in the hospital, but that little man wasn't my little dude.  Hospital Caleb is not the Caleb we all know and love.  I've grown to understand Hospital Caleb, but that doesn't mean I have to want him back anytime soon...or ever.

So bringing him home today was doubley sweet.  It meant that we all got to be together again.  It also meant that we got our wonderful, happy, carefree little dude back.  He's just a different baby at home.

I guess you all need a bit of an update! Today was a bitter sweet day.  We were discharged, which meant that Caleb's blood infection is under enough control that they feel comfortable now taking him off of the IV antibiotics and treating him with oral antibiotics for the next week. The bacteria that got into his blood was a form of strep, and it was no joke.  I'm very, very glad to see it going away.  He doesn't have the fevers anymore and he's brightened up quite a bit.  He was very lethargic and sort of not there for a while. 

Then there was the other side of what kept us in the hospital.  The seizures.  They are classifying what he had on Wednesday night as a Complex Febrile Seizure.  It was focal to the right side of his body and therefore required further testing.  Plus, he had previous history of suspicious staring episodes on top of some developmental delays that were making it more concerning.

The MRI, the EEG (which I have to note he did awesome at. Everyone was getting us prepped for a really angry baby as they'd have to hook him up to all kinds of electrodes...but he was completely fine all the way through until they had to drench his head in water to pull the electrodes off!  He even fell asleep like they wanted him to during the test, fabulous!), an x-ray swallow study, and the lumbar puncture were all taken into consideration with the analysis of our Mr. Caleb.  By the way, the swallow study was thrown in late yesterday evening after the feeding pathologist came to see Caleb.  After her clinical assessment, she was concerned he was aspirating when he swallowed, pushing fluids into his air way or up into his sinuses.  He obviously fights the bottle sometimes and pulls off so badly that she was pretty concerned.  Plus, he got significantly more congested after the bottle, making her suspect more about the sinus aspiration.

They ordered the swallow study stat and luckily they let me stay in the room for this one.  There was no anesthesia involved, he was actually sitting up in a big red car seat like contraption next to an x-ray machine.  Then, they mixed some barium into his bottle and fed him two different consistencies of formula (one thin with nothing but barium and one thickened) and watched video x-ray images of his mouth and throat as he swallowed.  It was pretty amazing, actually.  I stood right by them and got to see the whole thing.  Then, after he had some trouble with being fed by one of the nurses, I jumped in and fed him the rest. 

He did much better on the thickened bottle, much less pulling off.  They saw one episode of aspiration into his airway but that's not too big of a deal.  What they weren't expecting to see was his serious lack of coordination with swallowing.  His voluntary muscles were doing the right thing. His sucking reflex is good as is his final swallowing reflex.  But the middle, the involuntary organization of the fluid, is where it got all jumbled.  His muscles were dumping the liquid down into his throat too quickly where he would then have to organize and drain the fluid rather than having the muscles stop the fluid in the back of his mouth before dumping it.  So basically, he would lose control of the liquid and then freak out and pull away.  Understandably. 

They recommended feeding therapy to help work on those involuntary muscles through increased sensory exercises.  I'm interested to see what they'll do.  They also recommended that we do a 48 hour trial of thickening his formula with oatmeal to give him more consistency to try and re-learn on.  The thin fluid just gets away from him.  They were hoping that thickening it up would help him to feel it more and try to control it. 

They also noted that because it is the involuntary muscles, it's likely not a strength issue.  It's more of a neurological issue.

That brings us to our visit with the neurologist today.  He reviewed the EEG and the MRI, and did a clinical evaluation of our little guy this morning.  He tested his reflexes, his strength in pulling up both from his arms and his neck, his tracking, his noise recognition, his voice recognition, and his state of devlopment.  He asked us a lot of questions not just about him but about Grace as well.  Then he showed us the MRI images and pointed out his areas of concern.

In the end, the short version is that yes, he's developmentally behind.  And no, it's not really a strength issue.  His arm strength is pretty good, though his leg tone could be better.  His head is a bit wobbly for his age, but he doesn't think that his muscles are to blame.  He pointed out a couple of areas in his brain that are a little small for his age.  He feels that physical therapy will help him to keep up with his developmental milestones but that he may not necessarily catch up to, say, his sister.  He might always be a bit behind. 

Of course, there's no way to tell what will happen over the next five, ten, twenty years.  He's not significantly behind.  But there are some biological factors at play.  He wants Caleb to have some more blood work to test his chromosomes for abnormalities.  He's doing a few standard tests that pretty much always need to be done when you see boys with developmental delays, like Fragile X Syndrome, but doesn't think that's an issue.  There's another one that he wants to test for just because it presents with inverted nipples, which Caleb has.  I thought that was funny.  He said he wasn't concerned with that, either, but felt he should cover all of the bases.

I'm glad that we found all of this early, but I'm sort of in a place where I don't want to worry too much about it. I think I could and definitely have that tendency (and might be fighting it off with all that I have right now).  I think I could obsess over ensuring that Caleb is "normal" or honestly, well above average like any Mom wants.  But the doctor also mentioned that there wasn't really much need to follow up after the blood tests come back other than ensuring he's getting the therapy he needs to continue developing and hopefully pick it up a bit.  There's not much else to do.  I may know the biology of my baby boy's brain, but I will never know the true capacity or potential of the functioning of his brain until I see it for myself.  And I'm pretty sure it's going to be stellar.

Little man needs time, and a little extra help, but not much.  He wanted to make sure we weren't too worried today when we got home.  We chilled out on the couch for a bit as he was groggily waking up from his nap.  Grace came to greet her brother and smack him in the face, her very best sign of endearment.  He gave her a few quick smiles but just seemed to need a little time to regroup- he's been through a lot in the past few days.  About 30 minutes later, he was ready to go.  We played in the jumperoo, where he spun himself around several times, playing with all of the toys around him.  Then we played in baby jail where he sat up for a bit and then gave us some giant classic Caleb smiles. And then, oh then he wanted to make sure we really got it- he's gonna be just fine. We were playing on the ottoman and I sat him up. Fully expecting him to tumble over any second, I was bracing myself to catch him.  Then thirty seconds went by. Then a minute.  Then two minutes.  Yep.  Little man sat up all by himself for well over two minutes.  Just like any 8 month old!

So, you see, I might know now that there are a few "areas of concern" in Caleb's brain.  He might not have all of the brain volume that he should by 8 months. He might have thinning in his corpus callosum that could lead to motor, speech and social difficulties.  But I also know that he's one of the happiest babies I've ever seen.  He's bubbly and giggly and completely entertaining.  And I just don't think that's going anywhere.  I think there are big things in store for little Caleb.  I, for one, cannot wait to see what lies ahead for this little man who just won't give up.


Lots of photos today because we never uploaded from yesterday!

Friday:

Gracie at home with Mommy...

Showing off her crawling moves...

Noticing the cat...

And being teased relentously.  Tayla was coming just close enough to get Grace all excited but staying far enough away that she couldn't be caught.  Smart kitty.

And a bit later at the hospital...

Caleb hanging out with Mommy in the rocking chair, playing with a cool new toy (we had just bought him this toy in our crazy shopping spree on the 4th but had yet to get it out of the packaging.  They had it at the hospital in their Child Life department- all kinds of toys, distraction for tests, sugar water to keep the babies happy, good stuff!)

Playing in his hospital crib

Mid-coughing attack...

And not happy about it.

Trying to play while all hooked up is tough.

Today:

We opened up all of the new toys after we got home from the hospital.  Nana came and watched Grace so Ben and I could both be at the neurologist consult. Grace slept most of the time Nana was here and was ready to play when we got home.  She actually threw the ball at the basketball hoop several times!!!

Caleb preferred chewing on the baseball bat.

And the SITTING!!!

Still sitting

Sitting and playing

Sitting and smiling

Sitting and posing

STILL sitting and posing

And finally leaning and falling. :)

Grace's first experience with a puff! She mostly played with them.  Eventually she put a couple in her mouth (after some difficulty) but spit them all right back out.  I was surprised. I thought for sure she would eat them. 

Um. That was supposed to be in my mouth...

Ok Mom, just sitting there laughing and taking pictures isn't exactly helping the situation.

Yeah, you too.  Those weird looks on your faces aren't getting this puff off of my chest and into my mouth any quicker.

SO happy to be home and playing with Daddy

They're pretty much best buds.

Together at last!

Hi :)

I promise it's her way of saying "I missed you". We'll need to work on that.

See, she was pretty stoked to have him back.

He was so happy, too.  He spent a good amount of time just gazing at her adoringly. :)

Had to capture this for my journal.  Grace started really splashing today in the tub!! These were no wimpy little splashes.  These were giant, soak her AND Daddy splashes! She didn't mind it getting in her face or anything. She was having a blast!