Early Intervention and a New Doc

It has been FOREVER since I posted an update about Carter. First let's get the medical stuff squared away. Since our last update on urology, he has been wonderful - ZERO UTIs. HOORAH! He had hand/foot/mouth - BOO. And we've been for a check up with our absolute fave - Ms Mary Jane! His creatinine has creeped up a tiny bit, but it's nothing to get wound up about yet. They look for increases over a 6-9 month trend rather than one or two increased reports. However, Carter's potassium was running on the low end of normal, so we were able to start adding whole milk to his bottles. He's now taking in about 2/3 whole milk, and the other 1/3 is still PM 60/40. We had labs drawn last week to see how this affected his levels, and they were still low, which is a great sign. Once we get him completely weaned off of formula, we'll have another set drawn just to make sure there are no surprises. Overall, we got a great progress report since Carter's weight was up. Even though he's still not as chunky as they'd like, he is at a good weight/height ratio, so they're pleased.

 

Yesterday we went to Birmingham to see our new neurosurgeon, Dr Blount. While we're sad to see Dr Wellons go, we are very happy after our first encounter with Dr Blount. A co-worker of mine has a boy who is also a patient of Blount, so I dropped their last name, and he was quick to say, "Yes, I know William." There's nothing better than a doctor that really knows their patients, and that's not just herding them through like cattle. Carter seemed to really like him, as well. This was a quick check, just to make sure we didn't have any concerns. He took a look at his scar from the surgery, and we talked a little bit about the MRI that Dr Harmon had on file from this past November, and he said he'd take a look at it to make sure there was nothing that was of value from a neurosurgery standpoint on it. We'll see him again in Spina Bifida Clinic in February, as well as Dr Conklin and Dr Joseph for ortho and urology. I'm really excited about being able to be seen in this clinic... it'll be nice to get through three appointments in one trip! Here are some pictures from our visit yesterday.

 

 

Josh and I both got iPhones last week, so I've been playing with Instagram and Pic Stitch. Carter loves playing with the Fisher Price and Disney apps!

 

 

Tub time!

 

 

 

 

 

Daddy had a birthday in September! 

 

 

Carter's eating habits have been steadily getting better. He'll drink sweet tea now, and eats on a pretty regular schedule throughout the day.

 

 

 

 Hey, Papa! Look here!

 

 

We took Greyson to the zoo for his birthday last weekend - it was C's first time, and he loved it! He even got to pet a giraffe.

 

 

These are from today, playing at Meemer's house.

 

 

Another thing I wanted to update was the fact that we finally referred ourselves to the Early Intervention program. This is a state/federal funded program that provides therapy services to qualifying children, to include physical therapy, occupational therapy, and speech/hearing and vision therapy. We've known about this program since Carter was in the NICU, but had been putting it off until he got his feet straightened out. A friend of mine recently got married, and her new mother-in-law just so happens to work for an agency as a service coordinator for therapies that participates in the Early Intervention program. After talking with her at the rehearsal dinner, we finally got things going to get Carter set up. They came yesterday morning to do his initial developmental assessment - it was so fun to watch them "test" him to see what skills he had. The thing that impressed them most was his nose-blowing skills! (He's one of the few kids that will actually blow through their nose and not their mouth.) He seems to be doing really well with cognitive skills, and he showed off with his signs and sweet little Southern drawl with his speech. Our biggest concern is obviously his motor skills and mobility. He's definitely progressing, he's just very far behind. In the past couple of weeks he has finally become proficient at pulling himself to standing position with the table or couch, and will even take some side steps around. He's lacking core strength and leg strength due to the prune belly and arthrogryposis. Once he's been qualified through the program, Early Intervention will coordinate with the therapists he needs, and they will visit once a month or so and work with him, as well as give us "homework" to do! I can't wait to see the progress he makes through this program, and I'm so thankful God sent Mrs Vines our way to coordinate Carter's care!

 

Besides a follow-up appointment with nephrology in December, our slate is clean until February. We hope to enjoy this holiday season with ZERO hospital stays, little to no illness, and lots of family time.

 

 

 

Brace Yourself!

Yesterday we traveled back to Children's South to visit Dr Conklin. Due to issues with their scheduling system they recently migrated to, we were not on the schedule :) So we had a little wait while they worked us in.

Carter weighed 23.5 lbs this time. Thankfully we WERE on Bill's (the orthotist) schedule. Will cut Carter's casts off for the last time, and Bill promptly slipped on Carter's new AFOs to make sure they fit correctly. He was pleased, and explained to us signs to see if they are rubbing, etc. Dr Conklin made a quick appearance and cut off both buttons, and gave us our wear schedule (full time, basically, besides bath and pool time) and asked us to come back in 6 weeks to follow-up on his progress.

We had to stop by and see Meemer so she could see his new braces, and his new shoes!

He's been doing really great with the braces so far. His legs are super sensitive and all of the stitches are still working on dissolving/healing. He's losing dead skin like it's nobody's business, and he's itchy if his socks/braces are off. I've been scouring the internet to find suitable socks, as our normal socks are not tall enough. Thankfully Bill brought us two pair of AFO socks that will get us by for a little while. Carter is back to scootching all over the place... he's a little faster now that he can bend his knees again. Today we went over to mom's and he saw Greyson eating an ice cream cone, so of course he had to have one.

We received a letter in the mail today from our neurosurgeon, Dr Wellons, saying that he was taking the position as Chief of Pediatric Neurosurgery at Vanderbilt University Medical Center. He is a wonderful doctor, and Tennessee will be lucky to have him. Thankfully we frequent neurosurgery the least, and all of our replacement options at Children's are outstanding. I think our next visit with them is September. Next up is a trip to the downtown campus on Monday for a renal ultrasound and urology appointment. We'll also be dropping by nephrology clinic to have Carter weighed now that he's got his casts off... hopefully he'll show a decent gain this go-around. It'll be a long day for little man - so keep him in your prayers!

Ephesians 6:10

Finally, be strong in the Lord, and in the strength of his might.


Yesterday’s agenda:

0900 – leave for Birmingham

1035 – park at Children’s, realize bottles are still in Deatsville

1100 – Josh takes Carter to PT appointment, I run to nephrology clinic to beg for formula and a bottle

1130 – nutritionist Brooke saves the day with a can of PM 60/40

1200 – Carter has a new boot, finally! & Connie is so proud of his progress!

1215 – lab slip from nephrology, Carter eats apples while we wait to be stuck

1230 – labs drawn, such a big boy! Didn’t even cry with the tourniquet, just with the poke!

1245 – lunch for mommy and daddy

1310 – check in at neurosurgery

1345 – called back

1400 – Dr Wellons says everything looks great with his scar and lower body function as far as he’s concerned, and the helmet is an option to straighten out his head shape, but not an absolute necessity… and since insurance usually doesn’t cover the $4,000+ helmet… we think Carter will be fine without one :) We won’t see neurosurgery until next year!

1500 – head over to nephrology (again) and they’re waiting on us. Nurse Nikki weighed, measured, and got a blood pressure and temp on him. He weighed 19lbs 13oz, 27in long. Mary Jane saw us shortly after we finished vitals, and said his labs looks great – his potassium has leveled itself out even more, so we’re cutting back on the kalexate again. She didn’t even bother having him cathed for a urine sample since he’s not running fever and has been doing so well (plus, she knows that we see the signs and will bring him in if needed). The only thing of concern is his weight! We were shocked… because he’s a healthy boy, not by any means scrawny. He’s always been on the short side – 9th percentile for height :) However, at our last appointment he was near the 100th percentile for weight, and has since dropped to the 50th. He’s gained 8oz since we were admitted last, but that’s apparently not enough. We haven’t been giving him a lot of baby food for fear he’d want even less of his formula… as we struggle to get 20-24oz in him every day. She listened to our concerns, and we told the nutritionist the same, and we came up with a game plan. For his kidney to stay healthy and hydrated, they recommend he take in no less than 27oz of fluid daily… 24oz of that should come from formula to aid in calorie intake. We will feed him some form of baby food or cereal three times a day for extra calories… a major leap from our 1-2oz of baby food twice a day. This could all just be a fluke from him being sick again this month – the gagging and vomiting spells force us to stop baby food feeds in order to keep formula and medicine down – so now that his snot is manageable and we have a routine to keep it at bay, hopefully he will gain in the next two months. Worst case scenario is he drops to the 40th percentile by our next appointment, and they will place a G-tube in his nose to feed him through… this will be a NIGHTMARE! He had an NG tube several times while in the NICU, and was constantly pulling it out. His dexterity is much greater now… so I can only imagine how often we would be at the ER having it replaced! She said he is by no means at a “failure to thrive” stage, and that renal patients tend to have sorry appetites for unknown reasons… but that’s usually in patients that have more severe cases of kidney disease (Note: Carter’s kidney disease is considered mild – not moderate, or severe – MILD – praise God!) So, all that said – please pray that Carter will be HUNGRY! We need this boy’s appetite to increase greatly, or there will be consequences.

1600 – we headed back home. Traffic wasn’t great, and Carter slept most of the 2 hour drive back…

1800 – Walmart… Zaxby’s for sustenance…

1845 – change the bag, bath time!

2030 – why is Carter still so awake? ….oh… the 2 hour nap 3 hours before bedtime… BUT, guess who managed to get on their knees a little bit last night due to his wild hair?! He got tickled with himself when he did it :) This is pretty cool, because we weren’t sure if his hips would allow him to get into this position!

2130 – little man finally sacked out after a super long day



Up Next:
October 11: Dr Harmon in General Surgery for follow-up on colostomy

October 17: Dr Conklin in Orthopedics for follow-up on arthrogryposis and bilaterally dislocated hips

November 28: Mary Jane, CRNP in Nephrology for follow-up on kidneys/nutritional issues

After our nephrology appointment on November 28th, we’ll be admitted under the nephrology team to start Carter on fluids for his urology surgery the next day. The night before surgery they always stop feedings at midnight, and for renal patients this can get tricky for electrolyte needs, so we’ll be admitted just to make sure Carter doesn’t end up dehydrated and is good and ready for surgery the morning of the 29th. This surgery is the first in a series to descend Carter’s testicles, which is normal for babies with prune belly syndrome. Dr Joseph explained that the first surgery shouldn’t entail anything major – expanding vessels and tissue to prepare for future surgeries – and that if he doesn’t start descending them that we shouldn’t even have to restrict Carter’s movement afterward. This surgery is not a huge deal, but any time a little one is subject to anesthesia there is always paranoia on the parent’s part :) We know he’ll do fine, though.

Our new prophylactic, bactrim, along with draining Carter’s bladder by manipulating it manually (mashing on his belly), has worked wonders apparently. We have been UTI free for over a month, and hope to continue that run! Thanks for your prayers, and keep ‘em coming!

Not What We Expected

The previous post explained what they expected was wrong with Carter. Once he was here, it was a whole new diagnosis. Later, we were informed by a geneticist that Carter has what is known as OEIS complex. This collection of defects is very rare, and is estimated only to occur in 1 of every 200,000-400,000 pregnancies. I'll break down this malformative complex for you. O is for omphalocele. An omphalacele is a sac that protrudes from the umbilical cord and usually contains pieces of organ and bowel. Carter's only contained a small piece of bowel that isn't necessary. E is for exstrophy of the cloaca (usually the bladder is on the outside of the body, sometimes inside out and split apart). We were very thankful that Carter had no exstrophy! I is for imperforate anus. Carter's anus never formed! S is for spinal defects (usually spina bifida). Carter had a tethered cord, not true spina bifida. All in all, we have a very mild case of OEIS, and it helped that Carter was 8lb 14oz at birth!

The first time we saw Carter was in the UAB NICU before he was transported to Children's for surgery on January 12th. Carter was a pretty amazing "whimpy white boy" and only had to be put on the ventilator for surgery/anesthesia purposes. His first surgery was performed by Dr. Chong and his general surgery team. During this surgery, the removed and repaired the omphalocele and gave Carter a colostomy. A colostomy is where a small piece of colon is brought to the skin in what is called a "stoma" and then a bag goes over it to contain his poop. The colostomy worried me for a long time, because it seemed like it was going to be hard to maintain - but as the nurses promised, we got the hang of it, and now it's routine. Carter came through surgery wonderfully, and they let my parents and Josh take me over to Children's to the NICU to see him that night. He was on the ventilator to recover, and sleeping soundly. The next day we met our neonatoligist, Dr. Coghill, who happens to be the director of the NICU. He explained to us how Carter was recovering well, and told us about all of the tubes he was connected to and what they did, and gave us an outline of the plan for Carter. Then he asked us if we'd held him yet, to which we replied "No." His exact words to our nurse were, "Let's make that happen today. They need to hold him." So shortly after that we were holding our sweet boy for the first time!

Carter was weaned off of the ventilator in a few days, and the next big step was to start eating! I think he was a week old before he ever ate... which stressed me out terribly. Here's a picture of our first time feeding Carter :)

Carter started running fever on January 24th, the day before he was scheduled to have his tethered cord release surgery. He had a little bit of reflux between his bladder and bowel, which they thought would cause multiple urinary tract infections. So, our urologist, Dr. Joseph, decided that a vesicostomy would keep our number of UTI's down and help Carter's bladder empty better. A vesicostomy is where they bring the bladder to the skin in a stoma (like his colostomy). On January 25th, Dr. Joseph performed his surgery, in hopes that it would keep Carter well enough to let neurosurgery do their thing soon. He did great and didn't even have to come back on the ventilator! As soon as his UTI was cleared up, and Dr. Joseph gave a thumbs up, Dr. Wellons from neurosurgery got us on his schedule for surgery. Carter's cord release was on February 2nd, and again, he recovered beautifully, and came back on room air. This surgery made Carter a little more uncomfortable than the others, since he had to lay on his side for a few days. He handled it well, though, and we were able to hold him in no time.

On February 4th, they transferred us to the 5th floor to what is referred to as "The Cube." It's four spots and still full-time nurse care, but was a major step toward coming home. On February 7th, the discharge nurse came by while I was visiting and asked me if I wanted to room in with Carter that night, that she had an open room. Josh was back in Montgomery at work, so I was freaking out trying to figure out how I was going to make it work! I went back to the Ronald McDonald house and frantically gathered as much stuff as I could, and scarfed some supper before I went back to Children's to care for my sweet boy with only limited nurse intervention! It was a fun night, waking up every three hours to feed Carter (even though he was still asleep) and change his diaper. The next day my mom brought Josh up and we spent the day waiting for all of the doctors to sign off on Carter's release, and getting all of our follow-up appointments scheduled. It was so crazy to think that after a month we were finally going to get to take him home! Mom went back that night and cleaned our house for us... it was a mess from our running in to grab this and drop off that, but not actually living there. The discharge nurse came by later that night and taught us how to change Carter's ostomy, and we even got to do it for the first time. Teamwork is the key!! Josh and I learned quickly to work together on that. The next morning another discharge nurse came by to go over CPR with us and to take us down and get Carter installed in the car correctly. Here's a picture of Carter, waiting on his daddy to get the car!

That marked the end of our first hospitalization. We had many stressful days and sleepless nights during that first month. I cried alot of tears, and Josh did alot of consoling. So many people prayed and God showed his mighty healing powers through Carter. We are so thankful for all of the prayers, flowers, gifts, and kind words that our family and friends offered. I hope to keep this blog pretty current so everyone can keep up with Carter as he grows!