Acid Reflux

Oh My Goodness! 

I'm so glad that these appointments are over. 

We started out with an ultrasound on his kidneys and adrenal gland. We learned that the hemorrhage has gotten smaller meaning that it's resolving itself.  YAY!  His kidneys still look a little enlarged, but the Urologist isn't too concerned about it yet.  We'll just keep watching them.

After that we headed over to ENT.  Carter has been doing well with his breathing, but occasionally he gets a little whistle in his throat and whenever that happens it seems like his breathing gets a little heavy too.  I thought for sure that he had Laryngomalacia, and Carter's Pediatrician did too.  The ENT did a Laryngoscopy which is where he took a long wire which is about as thin as spaghetti and pushed it through Carter's nose and into his throat.  It has a tiny camera on the end that showed us what is going on in Carter's throat.  It turns out that the whole area was VERY red and inflamed proving once and for all that Carter definitely has acid reflux.  We added another reflux med (Zantac) and are going to try getting him off of the continuous feeds at night.  The ENT pointed out that if your stomach is being continuously fed, it will continuously produce acid.  Hopefully this works.  Honestly, Carter has been doing well, but after seeing how red and inflamed his throat was, he must really be miserable.  I hope we can help this with medication and no surgery is needed.

I am a little bit mad at myself over this whole thing.  Way back when Carter was in the NICU, he had another Laryngoscopy done which showed similar results.  Things are a little fuzzy for me, but I remember that at some point they took him off of one of the medications and after another test the NICU docs decided that he actually didn't have it. I fought to keep Carter on the Prevacid, but I should have fought to keep him on the Zantac too.  I remember Carter's nurses telling me that he needed to be on both, but I gave up the fight at one medication.  At least now we have proof, and can move on.

Doctor's Appointments Yuck!

Tomorrow is the big day.  We're taking Carter to see what the status is on his Adrenal Hemorrhage. We have an appointment to have the ultrasound done in the afternoon followed by an appointment with his Urologist and ENT.  The ENT obviously has nothing to do with the Hemorrhage, but they had an opening so we decided to try and kill two birds with one stone.

Have I mentioned lately that I really hate doctor's appointments?  I mean, I know that they are what is best for Carter, but I still hate them. Among many things, I hate the nervousness that I feel before we go to them. Our little experience with the plastic surgeon last week is exactly what I'm talking about. Not knowing if we're going to find out something new about Carter's condition gets to me every time. It scares me to think that he'll have to have additional surgeries.  I'm not naive... I know that new things are going to come up, but it's the feeling of waiting for the other shoe to drop.

These next two weeks are full of appointments that I'm especially nervous for. Tomorrow, I'm nervous for the ultrasound because I REALLY want the hemorrhage to have cleared up on it's own.  Nervous for the Urology appointment because I'm hoping that his Kidneys look better from the last ultrasound.  Nervous for the ENT appointment because I plan to talk to him more about Carter's airway. I'm ready to move on from here.  Wish us luck! I'll update tomorrow when we get home.

The Update On Carter

He has been one busy guy...that's for sure!  This could be a long post.

Where to begin... Where to begin.

Well, first of all, he has been working really hard on his sitting skills.  He can do it on his own if you sit him on your lap just right. Of course I always keep my hands close to him just in case.  I think that he's still a long ways away from being able to sit on the floor without help, but we're definitely on our way there.  I've been having him sit in his Bumbo chair to watch me cook.  It's good practice for him, and until recently he wasn't able to do it without getting really winded.

Overall, he just feels a lot more solid.  He is still working on the tummy time.  Carter has also found that he LOVES the game where you make him jump, or bounce on your lap.  It's sure to bring a grin and even a laugh at times.

He had an appointment with Dysphagia a couple of weeks ago.  For those who don't know, Dysphagia is a feeding clinic.  I was really excited for this one because I had a very positive experience at it last time.  This time around was completely different.  They weren't too happy with his weight gain, and with the things they were saying I felt as though they were blaming me.  I won't go into any more details, but I'll just say that Carter proved them wrong by gaining a pound during the next two weeks and that was without me changing his diet at all.  He's now up to almost 15 lbs which his pediatrician is thrilled with.  If you look at his growth curve, it is obvious that he's starting to catch up. Keep on keepin' on little buddy!

We had an appointment with the plastic surgeon yesterday.  It was supposed to be an appointment where we were going to schedule his next surgery, but it turned into something scary.  This doctor is typically very mellow and doesn't rush into anything.  Michael and I could tell that something was off when the doctor came in to talk to us, and didn't take his eyes off of Carter even while he was talking to us.  He then walked over and started feeling Carter's skull.  The doc wanted to know if he had ever had a head CT done...which he had in the NICU.  The doc recommended that we get one done immediately since he suspected that Carter might have Craniostenosis . This is when the sutures in an infant's skull fuse too early causing pressure on the brain.  It can lead to severe brain injuries.  Needless to say, that was one LONG hour while we waited for the results. It reminded me of the days of the NICU.   Thankfully we ended up with good news.  The sutures in his forehead have fused early, but the doc said he wouldn't do anything to fix it and he wouldn't even recommend a helmet.  Thank you Jesus.  That could have set Carter back unbelievably far.  We still don't have the date set for his surgery since they had to coordinate with different doctors, but should find out soon.  All that we do know is that it will be in May, and probably on a Monday.

We have a lot of appointments coming up. On Tuesday we are getting another ultrasound on his kidney and the Adrenal Hemorrhage, then Urology, then ENT.  On Wednesday we see Opthalmology.  The following week we are seeing an Endocrinologist to get all of Carter's hormones and glands checked.  Our pediatrician recommended that we get an overall checkup on this since he is having problems with his Adrenal gland.  The next day we have an appointment with an Orthopedic surgeon.  Carter has a part of his spine that bows out.  It's most likely either C-shaped Scoliosis, or Kyphosis.  I'm guessing that he'll proably need some bracing, and I'm praying no surgery is needed, but if it is...bring it on!

The little guy was very popular lately/  He got one package in the mail last week,  and got TWO packages today.  Nobody else got mail today, it was all about Carter. 

Last week he got a special needs nipple like I showed you here: Special Needs Feeder.

Carter's little friend, Carter (how ironic!) has had his soft palate repaired, and didn't need it anymore.  Thank you Carter!!

The next thing he got was from my good friend April . 

Woo Hoo! (Michael was thrilled!)  Thank you April!

Then he got a package from his good friend, Jaxson.

It is a blanket made special for Carter by Jaxson's Blankies For Babes

Isn't it just precious?!  I couldn't get him to throw out any smiles, but I assure you that he LOVES it. Thank you so much Jaxson.  We're always praying for you little buddy!!

It Doesn't Get Better Than This

Look at that face!  He smiles so big that it scrunches that left eye almost shut.  He's even got a little dimple on the top of his lip on the left.  I LOVE IT!!  It's my new favorite spot to kiss.

We're still just moving along here with Team Carter. He's seriously kicking butt with reaching out and grabbing things.  He loves to play some new games with Daddy.  Carter's getting more and more fun to play with.  We've been doing a lot of sitting practice, and still working on lifting that big ole' noggin when he's on his tummy. He's making slow but steady progress.  He went to the Pediatrician for a checkup and we found out that little C now weighs 14 lbs!  He's not even close to being on the charts for his height and weight, but his head size is in the 70th percentile.  No wonder he has so much trouble lifting it. The Pedatrician thinks that C is doing well, but because of the Adrenal Hemmorhage, he thought that we should see an Endocrinologist for a checkup on all of his hormones and glands.  I made the appointment for after the next ultrasound so she would have up to date information on his situation.

We have a lot of upcoming appointments including the one where we'll schedule the date for Carter's next surgery.  I have mixed feelings about it.  I'm certainly not looking forward to the hospital stay, but am very anxious to have it over and done with.  There are a lot of doctors who think that the soft palate closure is going to help him with his vocalizations, eating, and most importantly breathing.  I'm trying really hard not to get my hopes up, but sometimes it's hard not to.