Tuesday, February 19, 2013

Things always have a way of working themselves out...

I hardly know where to begin, there's a lot of good stuff happening around here!

We got our curls cut off a couple weeks ago :(
But he's still just as handsome as ever ;)

First of all, I am so so so glad we decided to postpone Clay's Nissen Fundoplication surgery. Because................he has been tolerating his G-port being clamped throughout the day and is even tolerating some G-tube feeds!!!!!!
For those that need refreshing: back in May, when he had the G-tube placed, we learned that his stomach had an unnatural bend in it that caused the stomach contents to not empty into his intestines; Clay would puke if the littlest amount was in his stomach. Because of this, we had the GJ placed, so we could feed his jejunum, while we drained to the G-port to keep saliva/stomach juices/bile off his tummy so he wouldn't puke. So that's how we've been operating--20 hrs/day continuous feeds through his J-port and constantly draining his G-port.
Just by accident (or divine intervention), I forgot to unclamp his G-port when changing out the drain bag attached one night--which means no stomach juices could escape his tummy. Eric noticed about 8 hours later, and he suggested we leave it clamped throughout the day. I was apprehensive, I'll admit...but we ended up leaving it clamped for about 26 hours straight and Clay didn't puke once!!
So, I emailed our surgeon, to see if he would be okay with us trying to feed his G-tube. He agreed and recommended starting off with 4 hour trials...we've worked our way up to 7 hours today and I'm so happy/excited/relieved to say he's done excellent! No pukies at all!
The goal will be to get him totally off the J-tube feeds and then we will try to work up to doing bolus feeds through his G-tube. If he tolerates bolus feeds, the Nissen surgery will not be necessary. That thought makes me so happy I could cry. Y'all please send Clay's tummy some prayers and good vibes...he can do this, I just know it!

We also had appointments with Clay's pulmonologist, nephrologist and cardiologist last week. I'll just go into a big, long explanation of them all since I feel like I've left you all out of the loop the past few months..

- Nephrology: We see the nephrologist because Clay has a history of high blood pressure. The cause doesn't seem to be related to one thing specifically; the doc says it's multifactoral and not necessarily an issue with his kidneys. But still, we are followed by them. Clay takes a dose of Enalapril once a day to help combat the high blood pressure. When we seen the nephrologist Wednesday, he thought Clay looked great and didn't think a urine sample or kidney ultrasound was necessary--which I was thankful--Clay was already riled up enough after the numerous attempts to get his blood pressure. Docs plan is to let Clay grow out of his medication, rather than 'rock the boat' and wean anything. Sounds good to us! We see them again in six months.

- Pulmonary: We had a different pulmonologist this week at clinic, not our usual Dr. Anstead. But he was nice and also thought Clay looked great. He fooled with Clay's ventilator and turned the rate off for a few minutes to see how Clay tolerated it, and he didn't mind at all--which I knew he wouldn't. The ventilator rate (breaths per minute) is set at 6. Clay usually breaths 40-60 breaths per minute, so the ventilator isn't doing a thing in that regard. But the doc didn't want to make any changes right now--with our surgery still in the books for March, he wanted to get past that first and then we can start weaning some settings as long as Clay is up for it. He didn't find it necessary for any labs or x-rays, since he has been doing so well. Sounds good to us! We will see them again in a couple months.

- Cardiology: We are followed by the cardiologist because of Clay's pulmonary hypertension and his (questionable) narrow aortic arch. Every time we see them, we have an ECHO to try to get a check on the pressures in his heart, but every time Clay is being ornery and won't let them get a good picture (can't say that I blame him). So this time, we opted out of torturing him with the ECHO and decided to schedule a sedation ECHO within the next couple of months. If we end up needing the Nissen surgery we will coordinate with that, if not, we will schedule it separately. We really need to get some good pictures to see if his pulmonary hypertension has resolved. Clay has been off of Sildenafil (aka, Viagra) since the beginning of December because our insurance decided they wouldn't pay for the $500/month medication. Well, we sure as heck couldn't pay for it either, so he has been going without it. I think it's pathetic that the insurance company made the decision instead of the doctors...but hey, there'd be no way in this world we could pay for our 2 million dollar baby (and counting) with out the insurance, so I don't guess I can complain too much. And thankfully, I have not noticed any changes in Clay since he has been off the medication. He's just as happy and playful as ever! We are leaving him on 2 liters of oxygen just in case he may have any unresolved pulmonary hypertension. Anywho...it's up in the air about when the sedation ECHO will be, but it'll be sometime in the next couple months.

So, that's the 411 on his recent appointments...now to fill y'all in on this boy's developmental progress!

We've been having in-home sessions with First Steps since October-ish. At first we couldn't get any OT, PT or Speech Therapy out here--our service area was limited because of the location. So we've been working with a Developmental Instructor. Her job is mainly focused on cognitive development...she's given me a few good tips and suggestions to try with him, but honestly, she doesn't do much more than I already do with him, so the therapy has kind of been boring. At our NICU Graduate Clinic appointment back in November, they referred us to Physical Therapy but we were going to have to take Clay to a clinic in Lexington a couple of times a month for those services. But.....we got a call a few weeks ago and said they found a PT provider willing to pick up our service area...so we now have a PT coming in-home twice a month! Yay!!!
We had our first session on Monday. AND I LOVE HER! It literally brought me to tears after she left...she answered so many of my questions and gave me so many good things to work on with Clay. She was so nice and so knowledgeable and we just clicked...what a relief and such a blessing to have her help! I think Clay liked her too, but he got a little ornery with her because she was making him work, lol.
She was overall very pleased with how he looked. Of course, we just need to get him stronger. Just until the past couple of weeks, Clay has pretty much refused to bear weight on his legs...he'd just draw them up like a little froggy. But now he is willing to put some weight on his legs and will stand up good when he wants to (have I said he's ornery?). The PT (her name is Amber) said he has a lot of range of motion in his ankles, which she is afraid will make it hard for him to stand...so she thinks leg braces may be in our future. First she is going to try to get us a standing frame. I googled it and this is what I found:
I think it'll be really good for him!

Like I said, just within the past few weeks Clay has really seemed to take off. He has sat himself up from lying position two different times now. He really reaches for things and scoots himself around spins in circles and gets his self all tangled up in his tubes and hoses, lol!
He is such a little busy body with his toys. He loves to play and it's the cutest thing when he gets focused on a task. I just love to watch him learn.
He still loves books...he 'bout wears me out wanting to read so many books, lol! But I love it...his favorites are The Little Blue Truck, I Love You Stinky Face, and any of the books that mommy makes animal noises while reading, ha! He really is the most content and happy baby. I am so so so blessed to be his mommy.
As far as his oral aversion goes, I think he is slowly but surely overcoming! He always has something in his mouth, be it his fingers or toes, his toys or his tubes, lol! I have also been giving him pieces of my apple or banana while I'm eating, just so he can explore and get used to different textures. He usually does end up sticking it in his mouth and he doesn't seem to mind the taste! He gets a little freaked out if he bites off a piece; he usually gags if this happens and I quickly get it out of his mouth. I've given him little tastes of my homemade yogurt and he smacks his lips and acts like he likes it!
I am so anxious to give him real food. Even if it is a blenderized diet through his G-tube. I know that real food will do him a world of good. It just makes sense to me that he would get stronger and his body would heal so much better if he were getting quality nutrition. The formula he's on is obviously doing a pretty good job, but I know real food will be so much better. Especially produce from our backyard (and Nana & Pappy's), eggs from Nana & Pappy's chickens (hopefully we'll be getting some chickens too soon!), butter & milk from Uncle's cow, REAL FOOD!
We all need real food. I've been learning a lot about nutrition lately, thanks to a book called Nourishing Traditions and a membership to the Weston A. Price Foundation. If you have any desire to eat healthy and feed your family good quality food, I highly recommend that book and that foundation. It is truly life-changing. I am by no means following a true WAPF diet yet, but I have really been trying to cut out the processed junk, the sugar and the empty calories and I have lost about 10 pounds and feel SO much better. I have so much more energy and am just altogether happier. Once Clay is getting fed totally through his G-tube, you best believe I'll be giving him the same good stuff!

So many good things happening around here, we are so blessed. Next week, it will be 8 months since we brought Clay home. His first 8 months in the NICU felt like a lifetime but the past 8 months at home have flew by! It is absolutely amazing the progress he has made. Thank you all for cheering us on every step of the way. We love you all and hope to update with lots of more good news soon!