Another crazy week ahead

So, in a previous post I said id never plan another week like we had the first week Chance came home. Well, next week is one of those weeks.

Monday is his ECI evaluation. They come to the house to do it. He currently gets OT thru Cooks home health so he won't qualify for that. But, PT is hard to come by so if he qualifies, that's what I'd like to get. His initial OT eval results...C was right where he should be with adjusted age but like I've said before- early intervention is the best especially to help him with catch up to his actual age.

I also get to call his Pulmanologist to order a pulse ox overnight wear for his o2!! He's been doing really well with be wean from what I've observed. Hopefully will also hear back from his apnea monitor read which was downloaded last week.

Tuesday we're having a gbutton consultation with a pediatric surgeon. After many prayers, tears, more prayers, and many, many more tears we've decided to start looking at the other feeding option. As much as we did not want have to go through with the gbutton, it's going to wind up being in Chance's best interest in the long run. The NG tube he has right now is extremely irritating for his throat and nose. Plus, it leave the stomach airway open which allows for reflux...not good. Then, you have all the ugly tape on his adorable little face ;-(( So, I'm hoping after our meeting, we have a much clearing picture of the procedure.

Wednesday is OT.

Thursday is his pedi appointment.

Friday is his feeding evaluation (thank you Lord) with Our Children's House at big Baylor in Dallas. I'm so beyond ready for some feeding direction and help and an actual feeding therapy plan. They will also be able to predict a time frame they project it'll take before he's take 100% of his feeds by mouth.

We started adding more Neosure to help with thickening and extra calories for growth. It's not helping to thicken. So, calling his GI doc tomorrow to see about trying Thick It. I just feel like we haven't found the right consistency that he will swallow happily and safely. It's been very sad, isolating, and frustrating for me. Imagine having to deal with feeding issues 8x a day, which should be the most natural, pleasant experience. I feel so helpless.

So yeah, pray for my sanity next week.
Other than that, my little miracle is the light of my life.

Aunt Shannon and cousin Kendall babysat on Friday so Joc and I could go to dinner!!!

Chance watching some Baby Einstein. {can't remember if I posted this already}
http://youtu.be/pbjVPEjq7Zs

Oxygen wean

I started Friday with C's o2 weaning. I would let him go 1 hour on the morning and 1 hour at night and watch his saturation levels. His Pulmanologist said he needed to be above 92. Chance is holding his sats anywhere from 95-98!!!! So we did 1 hour 2x a day for a few days and then today I started with 2 hours 2x a day. After a couple days of this, I'll call pulm doc and they'll send a pulse ox from his office for C to wear overnight to determine if he can be off o2 for good!!! Prayers for that.

The home health company came today to download his apnea monitor. The info is read and sent to Chance's doctors which will decide if we can say adios to that monitor too!

Now it's just the feeding issues. A new speech path with infant feeding experience starts tomorrow so I'm hopeful. I scheduled a GI doctor appt for Wedn. She will help get C on a good diet plan as far as how many cal intake he needs based on his weight. Also, will give some insight on a gtube if that's the route we're going to take. 4 weeks is this week and that was originally how long they said they'd allow. I called his pedi today and were giving it til next week. C has been eating Fairly well the past day or so.

Please pray that The Lord will help C take off on his feeds so a gtube won't be necessary.

I laid C in his crib in his room yesterday to see if he's nap. Nope!! Too new and too much excitement!

5 months old- 6.5 weeks adjusted

And just full of total cuteness! He's beginning to smile a little. It's sort of a half smile and it's not all the time but it melts my heart when he does it!

Swallow study results

So, Chance had his swallow study this morning.  Of course he was sleep through it but the speech therapist had some tricks she used to help wake him up enough to eat a little.  The setting was very clinical, sterile, and cold.  They undressed him a bit, swaddled him, and set him up in this chair.  Then, he was given various thickened barium to swallow and they x-rayed as he swallowed.  He did aspirate one time during the study.  I just emailed the slp to ask which consistency he aspirated on.  I can't remember because they did so many and were going pretty quick through it.  Overall, she said he did pretty well.  He was not aspirating anywhere near the extent which wouldn't allow him to take food by mouth so yay!  His timing is a little off (suck and swallow) which is a preemie thing and he'll just grow out of it with practice.  She gave me different trials to do 1x a day like 1 oz of bm and 1 oz of a more thickened consistency.  About 10 min after the study, C began to cough a little, hiccup, and tear up a bit.  As I'd been suspecting, the slp also thinks he's refluxing.  The past couple of days he hasn't been much into eating.  It's been very frustrating for me lately.  There are so many pieces to Chance's puzzle and I don't have the luxury of putting them all together at once.  I put a call in to his pulm doc to ask about reflux meds.

So, the question still looms about what will happen after the 4 weeks is up with his ng tube.  Obviously, if he isn't taking enough entirely by mouth then he won't continue to grow and get enough nutrients that the ng can help provide.  I really just have to take it day by day.  As I should've realized by now, worrying does nothing.  Matthew 6:34  “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. 

I'm going to start weaning his o2 tonight starting with 1 hour 2x a day then going to 2 hours 2x a day.

Please continue to pray for Chance's feedings.  They he can grow and strengthen and build up his stamina enough to take all feeds by mouth. 

1st dinner out!

I don't think I've ever been so excited to go out to dinner!

Early morning shenanigans

Waking up every 3 hours at night is not easy business!  I was literally half asleep last night when I woke up at 1 am to heat up a bottle and I proceeded to pour the milk inside the warmer instead of placing the bottle in it.  LOL!  Then, I woke up this morning and found Chance's pee pee diaper that I'd changed at 4 am under MY pillow!  How it got there, I have no idea :-/  Thank gosh I wrapped it up so it wasn't all open.

We had our 1st (I'm sure many more to come) heart attacks the other night, Chance has his apnea monitor that he wears all the time and we have it plugged into a power strip.  Well, for whatever reason, the power strip turned off somehow.  In doing so, it made the apnea monitor go off which is so dang loud it could literally wake the dead.  Talk about scaring you half to death.  That's a sound you never want to hear cause it means your baby has quit breathing.  Any who, C's pack n play is closest to my side of the bed.  When the alarm went off we both flew out of bed and Joc managed to make it over to him before I did!  Thank the Lord it was only a false alarm. We haven't heard hide nor hair from that alarm since he's been wearing it.  

Chance and I had our first alone outing yesterday to Lowe's!  Yes, Lowe's!  There's no germs at Lowe's right?!  I figured it's big and open and we spent most of the time outside picking flowers anyways!  It's really not that big of deal carting all his equipment around.  He doesn't have to wear his pulse ox monitor 24/7 now so that's one less machine!  Really it's just his o2 tank and his apnea monitor.  Hey, I'm not the 1st mom that's had to do it.  

Tonight, we're going on our first family outing (other than to appointments) to dinner at Uncle Julio's-- on the patio!! (there's no germs at mexican food restaurants either) Happy for the nice weather finally!

Chance loves being on his tummy so tummy time isn't a chore for him.  He is getting so strong, he's now able to do the mini push ups!  Check him out...

 

Prayer requests:

Please pray that Chance's swallow study on Tuesday goes well and that there's no major swallowing complications.  Also, pray that C's right vocal cord will move over to 100% fully compensate for his paralyzed left one.  Lastly, pray for the continued healing of C's lungs.

P.S. Joc totally did not want me to put this picture of him on the blog but it's so stinking cute of the two of them, I just couldn't resist!  He never reads the blog, so he'll never know!!! Hahahaaaaa!

Appointment week- ready for answers

So, I have to ask myself, "Why in the world would I schedule 3, YES 3, appointments in one week???"  I have absolutely no idea what I was thinking but I will NEVER EVER, EVER AGAIN no I’m not singing Taylor Swift J) schedule myself into a crazy person.

Below is a breakdown of the 3 appointments and what we learned at each one.

ENT- we learned that Chance’s left vocal cord is in fact paralyzed from his PDA surgery he had to close his heart valve when he was 3 weeks old.  The ENT doc put a flexiscope down his nose.  I was holding C who was crying bloody murder. Joc and I watched on a TV screen and we could see that his left vocal cord was not closing like the right one was. The doctor said that there is a good chance his right vocal cord will move over completely to compensate for the left.  The doctor could see that his right was already slightly moving over.  He did mention though that babies who were born with vocal cord damage have a higher rate of the right cord moving over completely than the damaged being sustained through surgery. 

We knew there must’ve been damage because Chance’s cry is very hoarse/quiet so I’m glad to finally know for sure.  

Down the road, his voice may be raspy and during growth spurts and puberty, he may experience shortness of breath.  We go back in 2 months to see if his right cord moved over anymore. 

During the scope, the doctor could tell the area around the vocal cords was slightly swollen which could indicate aspiration and/or reflux.  He said it wasn’t that bad though.  Some cases, he can’t even discern the two vocal cords because they’re so swollen.  

When we were signing the consent for the PDA surgery, vocal cord paralysis was known complication to the surgery.  The more I read about it, it is more common in preemies who were less than 1000 grams and who had BPD (bronchopulmonary dysplasia/chronic lung disease).  The pda is located right next to the left vocal cord nerve and when you’re working with a tiny baby and an even tinier space, it unfortunately can happen.

So, yeah, we weren’t too happy to hear that news.  But, I have to keep in mind that we CAN deal with it.  The Lord has protected Chance through so much so if this is one of the only things we have to deal with, so be it.

You can read more about the surgery and vocal cord damage here

Eye doctor- OK, here’s some AWESOME news!!!!  Chance doesn’t have to go back to see the eye doctor and get those awful, awful eye exams ever again.  The blood vessels have grown out properly as they should to meet the retina.  Thank you Jesus!  I absolutely hate watching him have to suffer through those eye exams.  Of course, I don’t have to watch but I like to help hold him and talk to him during the process. 

Pulmonologist (lungs) – I love Chance's pulmonologist!  The appointment went very well.  I was so happy leaving his appointment I felt like doing a happy dance.  I needed some good news.  He listened to Chance's lungs and said everything sounded great.  After the swallow study on Tuesday, we can start weaning his oxygen.  He said to start by taking him off completely for 1 hour 2x a day and watch his saturation level.  Then, we can go 2 hours 2x a day.  After a few days of weaning, if he's doing well (saturation >94) than he'll send out a pulsox (reads o2 level) that Chance wears for 12 hours.  It'll then be picked up, he'll read it, and we'll make a plan from there.  

Speech came and did her eval of Chance and his eating.  She says he is in fact aspirating on thin milk.  I feel so guilty even saying but we were playing around with the amount of thickness and the one she evaluated him on was with no rice cereal.  We’ve only been giving thickened since.  I live in a state of anxiety with Chance’s eating. I feel like I’m shooting in the dark. I don’t want to be playing around, testing the thickness here and there,and just not knowing what is going on.  I scheduled a barium swallow study for next Tuesday, April 16.  He will swallow various dyed thickened consistencies to see which one he can swallow safely with (if any) which will help determine if he is aspirating and/or refluxing.  A slp administers it and a radiologist is there to read the x-rays which they shoot as he swallows.  At this point, his lungs are the most important and the last thing we want to do is to be damaging his lungs even more. 

As you know, we still have his ng tube (feeding tube) which we are still using at least a couple times a day.  Not with every feed but feeds he doesn’t complete or feeds he just doesn’t wake up for. 

I am extremely anxious to get this study done.  I feel it’ll put my mind at ease with knowing a clear picture of what his feeding plan will be.  

Please pray he is not aspirating to the extent where they would say nothing by mouth and for sure have to get a g tube.