Pumpkin Fail

So a few weeks ago, I saw a really cute pin on Pinterest.  There was no way this would've worked last year- Cooper just did not have the head control at 2 months to make this work, so I was excited to try it now.


Here is the pin:

Source: Uploaded by user via Crady on Pinterest

Here was the reality:

On the other hand, our other pumpkin turned out pretty cute:

Cooper's newer schedule

Once again, we have a new schedule for Cooper.  The nutritionist at Children's basically gave us his formula and water requirements and told us to figure it out, which was just fine by me.  The way they were doing it in the hospital was ridiculous.  Plus, his breathing treatment schedule has changed.  So here it is:

8 a.m.- Breathing treatment:  2 puffs Albuterol, 2 puffs Atrovent, 4 puffs Flovent plus CPT's.  He also gets Sabril, Prevacid, Robinol (a new medicine that helps to dry up secretions), and 40 mL of water.

10 a.m.- "Eats" 125 mL formula through the pump.  It takes one hour to feed him now.

12 p.m.- Breathing treatment: 2 puffs Albuterol plus CPT's.  He gets another 40 mL of water.

2 p.m- "Eats 125 mL of formula.

4 p.m.- Breathing treatment: 2 puffs Albuterol plus CPT's.  He gets 40 mL more water.

6 p.m.- "Eats" 125 mL of formula.

8 p.m.- Breathing treatment:  2 puffs Albuterol, 2 puffs Atrovent, 4 puffs Flovent plus CPT's.  He also gets Sabril, Prevacid, Robinol, a puff of Nasonex in each nostril, and 40 mL of water.

9 p.m.- We hook him up to the feeding pump for his 10 hour overnight feed.  He "eats" 39 mL an hour.

So his grand total is 765 mL of formula and 160 mL of water.  Plus he gets breathing treatments every four hours throughout the day, but we don't have to do them overnight.  This schedule is easier for me to wrap my head around than the other one was.

Pumpkin Patch

We FINALLY got to go to a pumpkin patch today and we got 2 big pumpkins!  It was a beautiful hour; 55ish, sunny, and just perfect for picking out some pumpkins.  Coops had a good time, then got tired.  I think that these types of things overwhelm him a bit.  Here are some photos:

Cooper is more interested in his hand than in the pumpkins.

"Daddy, I don't want to be a shark!"

Starting to get sleepy.

Now he's happy!!

They also had a big field of sunflowers.

Brad being artsy.

Cooper's home!

We got home from the hospital last night.  It took Cooper a little while, but once he figured out where he was, he was SO happy!  I was so glad to have my whole family at home and under one roof.

Today, for obvious reasons, we had a lot of errands to run.  We had to get Cooper's prescriptions, order his new food from WIC, run to the library, and go to the grocery store.  While at the grocery store, a couple of fun things happened.  The first is that Cooper is really getting curious about things.  We were picking out onions, and he would stare intently at one, then grin.  He did this with a white onion, a yellow onion, and a purple onion.  I don't know what it was about them that got him so interested, but it was really cute seeing him grinning at those onions!

He also tried some soy sauce.  We grabbed some sushi for lunch at the grocery, and just ate there since we had an hour to kill.  I would dip a chop stick into the soy sauce and he would happily lick it off.  Soy sauce?  How is that something he enjoys?

The other thing was that we randomly ran into Dr. Becton, Cooper's pediatrician.  She was so happy to see Cooper out of the hospital and in "real" clothes.

Good and bad things

Good things:  Cooper is quickly coming off of oxygen!!  He still needs a little (1/8 L) when sleeping, but when he's up, it's off.

So far, Cooper seems to be doing well with the new formula.

Today, Cooper was the happiest I've seen him in a long time.  He smiled a lot, was awake more, did some exercises for me and a speech therapist, and just seemed to be in a better mood in general.

Bad things:  We're having some trouble introducing bigger feeds to Cooper.  He's been on continuous feeds or Pedialyte for so long that his stomach just can't handle a significant volume all at once.  Do we're taking it slow and trying to get him all the nutrition he needs.

Yesterday, his lungs had a setback.  For some unknown reason, he had a LOT of crackles in his lungs.  They seem to be better today.  It was strange though and delayed some things, which may keep us in the hospital and extra day or two.

Cooper in his first pair of two-piece pajamas.  Thanks Zanette! 

Love his little grin!

Answers

Brad wrote this: Well, day 7, and we finally have what we think are some answers.  Cooper had a procedure today where they look at his upper gastrointestinal tract (esophagus, stomach and first part of small intestines).  They had to knock him out to do this so he's still really sleepy.  The GI doctor initially said there was a 20% chance that this would uncover anything significant, but once he got in there he saw several concerning things. There was a good bit of inflammation throughout the last part of the esophagus, the stomach, and the small intestine.  In addition there were several visible lymph nodes in the first part of the small intestine.  These findings, when taken in the context of his poor tolerance of pediasure and his improvement on a pedialyte only diet, are suggestive of a milk protein allergy.  This is great news! This means we can start him on an elemental formula, something that's already broken down into its constituent parts that doesn't have milk protein, and hopefully he'll improve.  Also, his lungs are definitely on the mend. We plan on starting the new formula tomorrow. All together, this means he might be able to go home as early as Sunday or Monday and without oxygen!  Thanks for all your thoughts and prayers; Coop appreciates it!

The Magnificent Seven

First, all seven specialties showed up! Yay! I think this shows what a great resident Brad is and what a special kid Cooper is.  We're going to try a few new things, and do a few tests to rule some things out. First, for 24 hours he's going to be on pedialyte. Then we're going to try a different formula. One that is not milk based. This will rule out a milk allergy, which babies can get after the first year or so. If he still heaves and wretches well know he's fine with milk. If not, problem solved!

In the meantime, he's going to have an ultrasound of his brain to rule out any neurologic causes of the vomiting. He is also going to have a GI scope to make sure his esophagus and lymph nodes are ok. Also, they're going to do some labs to make sure his electrolyte levels are good.

Looks like we will be here through the weekend while all of this is happening, but at least now we have a game plan and are being proactive instead of just responding to symptoms.