May 19th!

That is the official date for Carter's next surgery!

We met with the final surgeon on the roster today.

Carter has three different doctors working on him, plus he'll have an Echocardiogram and ABR (hearing test) done as well. It's going to be one LONG day, but we're up for the challenge.

The major things that are happening for him is that he's going to be getting his soft palate completely repaired.  This could be a life changing surgery because it "should" make it a lot easier for him to eat and make vocalizations.  It may even improve his breathing.  I'm keeping my fingers crossed that it improves things on all accounts, but guarded because I don't want to be disappointed.

The second thing that is happening is he is getting some work done on his right eyelid.  Since he can't close it completely, there is a chance that he could dry out his cornia and create some serious damage.  The doctor will be doing a surgery to make his eyelid less tight.  He still won't be able to blink it, BUT his eyelid will look much more uniform to his left eye, and he'll be able to almost close it when he sleeps.  He'll have another surgery done when he is five to insert a gold weight which will help him to blink. At least we'll be making more progress.

Of course I'm nervous, but I'm also excited at having a few more things crossed off of our list, and to see what the outcome is.  It's a blur of emotions I guess.

Is it just me, or are those cheeks getting REALLY chubby?!?!

Carter also had a speech evaluation done today.  It was mainly to see if we were doing OK with the services we are receiving through Early Intervention, or if we needed to add some private therapists. I'm very happy to say that Carter showed off for the Speech Therapist, and she doesn't think that he needs any more help right now.  She said that she believes he is pretty close to the SIX MONTH level.  Now, he certainly doesn't babble as much as a six month old, or put together syllables, BUT she said that if you take into consideration the language he is using with the obstacles (clefts, hearing loss) he has to overcome to use it, that is where he is. I try very hard not to compare Carter to other babies...because...well...he's not other babies, but this news was still a little exciting to me.  I can't help but always have in my mind that he's a three month old, but Mommy needs to wake up because this little guy is moving forward without me!

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!!

BAHA ~ Bone Anchored Hearing Aid

I met with the new ENT yesterday, and was very impressed by his plan for Carter.  He thinks that it would be a good idea to get Carter started on a BAHA implantation during his next surgery.  The doc thinks that even if Carter has perfect hearing in the left side, it would be an advantage to him to have this placed as well.  So far, Carter would be the perfect candidate for this procedure, but we won't know for sure until after the big hearing test next week.  Here is a link to the information about the surgery: Bone Anchored Hearing Aid .  If you scroll to the bottom, there are pictures to give you an idea of what it looks like.  There is one little negative to this which would be that Carter will have to wear a very soft headband to hold it in place until he turns 5 years old. It's not as bad as it sounds, and I wish that I could find a picture online, but I can't seem to find one.

I also talked with Carter's Pulmonologist today.  He's been doing much better since the steroids, but still struggles at times.  I explained to her what he was doing, and she's decided to put him on an inhaled steroid.  It's a type that they typically give to Asthma patients and will be administered through a puffer with a spacer.  Hopefully this will help him.

Not much more going on.  Carter's been giving his Daddy smiles all night which Michael is just loving.  He's also increased his feedings from 80 ccs to 140 ccs (which is a little over 4 ounces). Holy cow!  He's really starting to pack on the pounds now!

His New Face

The final scab fell off of Carter's lip today, so we get to see the complete results of the surgery. He is pretty darn cute, but I still find myself missing the cleft at times especially when he makes a certain pouty face. I managed to sneak the Oxygen off for another pic so you could see his new face.

Healing

He seems to be back into the groove of things. After his strike on sleep (that lasted 48 hours) he finally crashed last night at 8:00 and didn't really wake up until this afternoon except for his meals. Part of the glue they used on his lip fell off today, so now we can get a better look at the repair and for only being 8 days I think that it looks awesome! Carter has also been feeding really well all day, so that hurdle may have already been overcome.

First Smile

Evidentally nobody informed Carter that he needs to sleep. He was up all.night.long and most of the day today. I think that part of the problem was a little trouble with his tummy. He still seemed to not feel well throughout the day, but perked up this evening when I fed him with the original bottle he started on in the NICU. He hadn't been doing very well with the other bottle, so I decided to give the first one a shot and I'm glad that I did. He downed it without much effort. I think that feeding could be a lot easier for him now...it's just a matter of getting used to it again. I'm so happy to see him feeding himself because I hated using the G Tube. He's now hanging out in his swing and smiling at his toys. His new smile is simply adorable. It tried to catch it on camera, but of course he got camera shy. Here's a half-smile anyhow.

Home

Carter is home! He hasn't slept all day. He's just loungin' in his playplace and enjoying his toys. New pics to come tomorrow!

Morning

Carter was not happy AT.ALL with not being able to eat, but he eventually settled down. That is after about 45 minutes of non-stop crying. Poor little one. He's in surgery now. The ENT already came back to tell us that they successfully put the tube in his left ear. Carter was going to have an echo, and EMG, and then they will get started on the lip/mouth stuff. I'll update again after we see our little guy's new face.

Schedule

We got the call. Carter is scheduled to be there at 6:00 am with surgery at 7:30 am. It is supposed to last 3.5 hours. Good luck little man!

First Day

Doesn't he look like a teenager in this pic? Mikey's first day of Kindergarten was yesterday. Well, it was kind of like a "faux" first day of school. I had to go with him and stay for 45 minutes while the teacher told us what to expect out of the year. He had to go back today for a quick test to show his teacher what areas he needs to work on, and now he's done until his first "official" day of Kindergarten on Monday. He seems to like his teacher, so hopefully he'll have a fun year.

Tomorrow is the BIG day for Carter. I still don't know the surgery time, but am assuming it will be in the morning. I have some pics of Carter and his daddy to post too. I finally got some done even though the baby cried during the whole thing. When I say the baby, I'm not referring to Carter. We will update when we can tomorrow, and are excited to post Carter's new look! Thank you for all of the prayers and well wishes.

Mikey

It's official! Mikey is now six years old. Part of me is so proud of him and the other part is a little depressed that he's getting so big! We had a small family celebration on his actual birthday followed by his party on Saturday. Michael set up the pool and waterslide, and Mikey had all of his cousins and some of his friends over. The kids had a blast! There was even an Optimus Prime pinata. Thank you everyone for celebrating our little man's birthday with us. It was definitely one that he'll remember forever. He started school today, pics of that to come tomorrow.

If you're wondering where Carter was for the party, he spent the day tucked away in my bedroom. No worries though, all 3 of his Grandmas made sure that he was well taken care of.

One Fine Day

It's days like these that make all of those bad days worth it. Carter has decided to show some of his personality and is finally smiling. We weren't completely sure that it was really a smile until his Occupational Therapist asked me today when Carter had started to smile. He thought that it was very obvious and couldn't believe that I had doubted it. I've been trying to catch the elusive "shrek" smile on camera, but whenever I pull the camera out Carter gets very serious. Mike (the occupational therapist) was impressed with how well Carter is moving around and feeding from the bottle. Basically he told us to keep on keepin' on with what we're doing. I did get a couple of cute pics of Carter today, and the top one is by far my new favorite. I snuck off his Oxygen for another quick pic. Hopefully I can get a smiling one before the cleft is gone.

The Official Update

I know that I haven't been giving many details about what's been going on with Carter, so I wanted to give one now that he's home and napping comfortably in his play place. As I wrote before, Carter had the cath done on his heart, but had a hard time coming off of the ventilator. What had happened is that during the procedure, the anesthesiologist was reading Carter's CO2 reading off of the vent and it was at 57. A normal person's CO2 is typically high at 45, but Carter's has always run high so they felt that was a pretty good baseline. The problem was that the monitor was wrong because when they took the actual blood gas it came back as 113 (which is REALLY bad). They adjusted the vent accordingly and got it back down to the 50's. We think that is what contributed to Carter's breathing struggles after he got off the vent. Either way, a Pulmonologist was called in to see Carter. He pulled up his history and informed us that Carter has something called Hypoventilation which means that he's not breathing deep enough which is causing him to retain CO2. This is the opposite of Hyperventilation when you have to breathe into a bag to raise your CO2. The doc told us that we had three choices.... CPAP, BiPap, or a Trach (where they put a tube in his throat and hook it up to a vent to help him breathe correctly...this would mean that Carter wouldn't be able to cry or talk let alone function in many ways). Then he continued on to tell us that the CPAP and BiPap were probably not options because of the cleft, so he started pushing for the trach. After thinking about it for like two seconds, we decided that this was NOT a route we were willing to take. Even when Carter was on a ventilator, his CO2 was still high so we don't think that it would help him all that much. The Hypoventilation may be the ultimate demise of Carter, but he's not going to live his entire life hooked up to a machine. We informed the docs that we weren't willing to do this, and even though they pushed us a couple of more times, they finally got the clue that it just wasn't happening. Once the doc took into account the fact that the ventilator didn't seem to help it, he also backed off a little more. We told them that we wanted to bring our little boy home and let him heal from this whole traumatic week, and although they didn't like our plan last night, they seemed to embrace it this morning. The plan is to keep Carter at home under a watchful eye to be sure that he isn't under any respiratory distress. He will have a follow-up appt with his ENT very soon to see if they think that removing his Adenoids, or stitching his tongue down will help with his airway issues. Carter will have his lip/prosthetic palate surgery on August 26th (along with anything the ENT thinks he can do), and afterward he will have another sleep study to see how he is doing with his breathing. If he's still struggling, they will fit him for a CPAP/BiPap mask.

On another note, there was strange development over this week. Remember that Carter has facial paralysis on one side of his face. Well, soon after he started steroids for his lungs, he started to have a lot of movement on that side. We aren't sure what will come of it, but it was still exciting!

One More Night

Carter is going to spend one more night in the hospital. As long as everything goes OK, we should be able to bring him home in the morning. After this is all over, I'll update with all of the medical stuff that's been going on with him. I'm too emotionally drained and just plain tired to put it all into words today.

Sleep Study Tonight

Please pray :) Tonight's sleep study will determine how quickly Carter will be able to come back home. Breathe deep little buddy!

Sleep Study

Well, he's out of the PICU YEAH!! He's going to have to spend a couple of more days in the infant unit because he needs to do a sleep study tomorrow. Hopefully it will go well!

Keepin' On

Currently Carter is kicking butt in the PICU. He managed to get weaned off of the high-flow today and is on .75 liters of Oxygen on a regular canula. Just to give you perspective, he is typically on .25-.50 when he is at home. His foot is much better and seems to have healed itself overnight. The docs are planning to move him out of the ICU tomorrow as long as he has a good night. He will spend the rest of his hospital stay in the infant unit. Carter has to finish his steroids, so he'll be there until at least Thursday night. As Daddy says, "Keep on, Keepin' On little guy!"

Cold Feet

Carter had another rough night, but improved during the day. He has currently been weaned down from 8 liters of high flow oxygen to 4 liters. The plan is to have him on a regular nasal canula by morning, but he seems to struggle at night so we can only hope that he doesn\'t have a bad one tonight. If he can get to a regular canula he can be transferred out of the ICU and into the infant unit. A new problem has come up with his foot. We noticed earlier today that it was starting to turn a purple color and was much colder than his other foot. We changed his position, and it seemed to help but it kept turning that color after awhile. They now have it elevated (which seems to help it more) and are hoping that a few blood vessels were traumatized by the heart tests and just need some time to heal. Only time will tell.

Sunday

Carter had a better day today. His main problem has been that his throat is really swollen from the ventilator tube which is giving him trouble getting air into his lungs. They've been giving him inhalant steroids which really seem to be helping. He'll be on those until the other drugs kick in. We went up there early, and spent a lot of snuggle time with him. I think that the poor little guy really does feel like we've abandoned him, but unfortunately we can't stay with him all of the time with our two other children at home. The docs started to wean him off of the high flow oxygen again, and are working hard at getting him out of the ICU and into the infant unit. We'll keep praying that it happens soon.

Breathing

Carter is struggling with his breathing. I HATE that we are back here again. He's currently on the high flow Oxygen, but it is possible that he'll have to move to the CPAP machine if he doesn't start to improve. Michael and I are beyond frustrated right now because our little boy was doing just fine at home and making huge gains every day, and now it feels like we're back where we started. The thing is that we were told that he really needed this Cath lab test, and when we asked if we could do another regular echocardiogram just to see if this last one got a bad reading, the doc told us that it wasn't necessary. Well, guess what?!? This test just confirmed what all of the older echos had shown... that the hypertension was just a trace amount, so all of this was for NOTHING. It was a waste of time, and put our baby back in the ICU. I would probably feel a lot different if we had found something that could potentially help Carter in the future, but no...instead it hurt him. I always try to remain positive in the light of the situation, but I'm finding it hard to right now. I'm scared to death that this "one night in the hospital" is going to turn into 1 week, then 1 month and we'll lose all of the progress that Carter has made on his development. I'm really sorry for the vent today... maybe I'll feel a little more positive tomorrow.