reflection

I was looking through my OEIS group postings and searching for a picture to send another mom to show her on Carter where his colostomy/vesicostomy are placed... and I came across pictures from the NICU. I'm not sure if I shared many of these... he was so fragile and tiny looking! Seeing them made me want to go get him out of his crib and snuggle with him :) We've come a LONG way. To God be the glory!!

WARNING: some of these pics show blood/scars/etc.

Still in the Regional NICU at UAB. This was the day he was born. Pre-surgeries.

Post-op. Omphalacele closure/colostomy placement. I hated that vent, even if it was on room-air. Notice his colostomy output is still just blood.

Still on the vent... so this was maybe day 3 or 4? He wasn't on it very long. Finally had some meconium output in his bag. His belly scar made me so nervous. It was so angry and jagged. It's still not a pretty scar... but it's a healed wound, so I'm thankful!

Vent-free! Way to be! Just suckin' his paci. Check out that poop - and I think his mucous fistula was discharging at this time - freaked us out!!

Handsome little devil :)

MRI Results

Today we had an appointment with Dr. Harmon to have our MRI on Carter's lower end read. He explained to us that it showed none of the muscles necessary to control a bowel movement. This would make it extremely difficult to do bowel management if we were to attempt a pull-through. His recommendation was that we fore-go the surgery and stick to the colostomy, since it works for us. We'll take it one step at a time, and may end up having to do revisions or move sites for his stoma as time goes on, but so far we have had no issues with prolapse or strictures, which is good. We weren't completely surprised by this news, and we're okay with the bag - it's a part of our life now. And quite frankly, this little guy is going to be happy regardless of where his poop comes out.

This boy had a good day at the hospital, overall... he was flirting and talking with everyone. Dr. Harmon was impressed with how his personality has blossomed since he last saw him.

Here are some fun pictures that we've taken since Christmas.

Carter went to Cate and Carson's birthday party, and I got this sweet shot of Cate.

Uncle Greyson's a natural like his sister.

Carter wanted to hold the pony, but didn't like the way it's hair felt :)

I'm hoping to get a post out this week about HIS birthday party... I just have to snatch my dad's memory card! Stay tuned. Next week we see Mary Jane for a kidney report card!

Double-dose

There’s a lot to catch up on since my last post.

For Halloween we took Carter to the Candy Walk in Downtown Prattville… the Sayer/Piatt clan had a Wizard of Oz theme, and Carter made his debut as the Tinman.

Tinman

Dorothy

Lion

Greyson

On Halloween night we took him to see Josh’s family, and then met Meemer and Uncle Greyson to go Trick-R-Treating in Pop’s neighborhood. Carter had a good time, and Josh got a lot of candy that he didn’t eat :)

On November 2, we admitted through Nephrology for Carter’s MRI for Dr Harmon. His urine had started to smell funny to me, so we had them go ahead and take a sample just in case. Sure enough, it was another UTI starting. He did really well with his MRI, which took about an hour, and woke up quickly. However, he had been snotty, and the meds they gave him while under anesthesia stopped him up pretty badly. To top it all off, Josh ended up sick with the stomach virus while we were in the hospital, and so did Carter. However, we all made it home well by Saturday in time to watch the Alabama/LSU game. (I had the stomach virus the next week…)

Cool headband!

Sleepy boys

"Big Al" at Children's Harbor

The following week was quiet but frantic as I prepared for my trip to Maryland, and my first long stay away from Carter. I left Sunday and didn’t come home until Saturday… it was a work trip for an Intern Conference. We had a really great time, but I was so glad to get my hands on my baby on Saturday! :) Josh and Meemer handled him like pros, of course. The next week was the week of Thanksgiving, and Carter made his first trip out of state. We visited my cousins in Valdosta, GA, for the second year in a row. Our family has been doing Thanksgiving there for the past several years now. It’s gorgeous and quiet, and we have bon fires and the boys go hunting. Carter enjoyed being passed around, playing with his cousin Nathaniel, and being outside. He even got to play with some kittens… while I tried hard to convince Josh to take one home with us :) This year we had a lot to be thankful for. Carter made it into the world safely, and has overcome major obstacles this year. I graduated from college. We got married. And we bought our first home.

Eating cheese puffs

Sweet kitty

Shoes!

Playing!

Monday we headed back up to Birmingham to check in through Nephrology for the second time in a month – this time for Carter’s urology surgery. We had our nephrology clinic appointment with Mary Jane before we admitted, and his labs showed an elevated white blood cell count, so they did another urinalysis to check for a UTI. Nephrology warned us that if it came back positive for UTI, urology may reschedule the surgery once the infection cleared up. Of course, his urine is always dirty, and our urologist made it clear to us that he would NOT have treated Carter again if it weren’t for the surgery, but that he didn’t feel it was a risk to go ahead with the surgery… We trust this man completely and gave him the go-ahead. Carter’s feeds were stopped at midnight on Monday night, and he didn’t go down for surgery until almost noon on Tuesday. We surprised him with a pillow pet that we received from one of the craft rooms at Children’s before the surgery to keep his mind off of being hungry. The surgery lasted 3-4 hours and he did extremely well, as usual. Dr Joseph was super-pleased with the way things went. Originally, he thought we would take a phased approach to this part of Carter’s problems, but he managed to descend both testicles, circumcise him, and fix the urethra opening that was slightly misplaced. All of this was done laproscopically, so we had no incisions to clean or deal with. Carter has three “holes” across his tummy, and one in each side of his scrotum. The stitches are all dissolvable, and the only wound care we have to do is to put polysporin on the circumcision area. It’s already healing up wonderfully (today is a week since surgery). He’s a little swollen and bruised, but otherwise is fine! It took him a very long time to wake up all the way from surgery, and we started him with water to make sure he didn’t get sick to his stomach after the anesthesia. He didn’t have a real feed for nearly 18 hours, and never fussed about it! We would have been able to go home Wednesday, but had to wait until Thursday for the final culture to come back on the UTI. This time we came home on two antibiotics for two bugs.

Night before surgery

Will Laugh For Food!!

Waking up

This is serious, mom

Saturday Carter went to his first parade! We met the Sayers for the Prattville Christmas Parade, and then had dinner with them. He enjoyed being outside, petting their dogs, and eating green beans at supper.

Carter is almost 11 months old. I’ve started planning his birthday party… which is blowing my mind. He’s still a happy baby, but is starting to get a little attitude. We still have to fight with him to eat his bottles. He’s not a fan of a sippy cup. He likes fruit baby food and not vegetable, but LOVES table food vegetables. We’ve started giving him toast, graham crackers, and the baby cheese puffs. He still won’t touch juice in a bottle or cup, but loves it in his oatmeal. He’s now able to army crawl to get what he wants, but rolls where he needs to go even faster. He loves the Christmas tree and his Elf on a Shelf. He bangs toys together, throws them, shares them with you, and gives his stuffed animals kisses. He’s started reaching for people he wants to go to, and is still shy in big groups and loud or unfamiliar places. He and Maverick are finally getting used to each other…. Mav is now calm around him and will let Carter pet him without licking his whole face, and Carter isn’t as scared and talks to him through the kitchen door often. Speaking of talking, we still have no English words out of Carter’s mouth, but he babbles and giggles constantly. I love this chunky man more than life, and enjoy seeing him grow and learn.

Coming soon – Carter’s first Christmas. We can’t wait! We have a follow-up with Dr Joseph the end of December. The first part of January will be busy – One year pictures. One year check-up. Birthday party. The middle of January we have a follow-up with Dr Harmon to discuss the MRI findings. And the end of January we will take another trip to see Ms Mary Jane to check on Carter’s kidney.

Please pray that we make good decisions concerning Carter’s upcoming care. The next year will definitely bring more surgeries, more recoveries, and more struggles. Pray for peace and understanding as we go through the coming year with this little angel. Pray for strength and healing for him. Pray for us financially – we have both been blessed with wonderful jobs, and so far have managed to stay on top of the constant influx of hospital statements. Pray that this boy will gain weight (we’re still being bullied about it)! Pray for us to have patience as he starts getting more mobile and getting into things, and developing his personality and attitude :)

I’ll try to update more frequently… this was a huge gap! Enjoy time with your families, and have a wonderful holiday season!

One-tooth Wonder

It’s official! As of this past Saturday, Carter has his first tooth!! My friend Alisha watched Carter for me while my Dad and I went to the Florida/Auburn game, and she called me shortly after I left with the news that she found a tooth! He’s so cute with it, and thinks it’s funny when he bites you and you pretend it hurts :)

In other news, Carter is now 9 months old! He weighs 20 ½ pounds now (he gained a ½ lb in 2 weeks, so Mary Jane is pleased!) He’s still not sitting up by himself, but his tummy muscles get stronger everyday! He gets up on his knees and rocks, and grins because he knows he’s done something. He squeals and giggles and flaps his arms. He loves puffs, and chews them well. He watches intently when Josh and I eat, and smacks along with us! I’ll have to post a video of that soon. He’s starting to experience stranger anxiety, but is still really great in crowds… only occasionally does he get upset about someone talking to him or approaching him. He went to his first birthday party this past Sunday – his friend Kade. He did so good! And of course, Meemer fed him some cupcake! He loves my parent’s dog Tebow and their cat Noel, and is starting to get more comfortable with Maverick. We’re taking 9 month pictures this afternoon, along with some family pictures, and we’re doing Christmas cards this year! I’m so ready for the holidays and getting to capture so many memories with family as we enjoy Carter’s firsts!

Now, on to the medical news. We saw Dr Harmon in General Surgery last Tuesday, and he said Carter looked great. It’s not ideal for his bag to be covering the fistula, as it is supposed to drain once that “loose end” of the intestine fills up… it has to have somewhere to go! However, we did schedule an MRI for November 3^rd (we’ll check in the night before to appease Nephrology for an IV for fluids). This MRI will be looking at the musculature near the rectum, to see if he’s developed any more muscle since his first MRI around 1 week of age. It will also show if the fistula is filling up, which isn’t necessarily a problem… it will force itself to reopen if it needs to, or Dr Harmon can re-dilate it to allow it to drain. We also talked about the Prune Belly Syndrome part of our diagnosis, and whether or not any muscle-tightening surgeries would need to be done on his abdomen. He said that our urologist would be more heavily involved in that part of his diagnosis, but that typically they don’t do those surgeries because they don’t always correct things, and sometimes do more harm than good. Plus, he said Carter’s is not too floppy compared to most, and that if he’s able to sit and pull up that he’ll be able to tighten them naturally, but may always be a little floppy.

We had an appointment with Dr Conklin, our Orthopedic specialist, this past Monday. They did a scoliosis series x-ray, since the tethered cord usually points to some form of it. He has a 14 degree curve. Scoliosis begins at a 10 degree curve. They consider bracing around a 20 degree curve, and surgical procedures are necessary for degrees of a much higher value. He said Carter’s is mild, and that it shouldn’t get worse since his tummy muscles are strengthening more and making him more stable in his posture. They’ll just keep an eye on it. As far as the arthrogrypossis, he said Carter’s movement is really great. Typically kids with arthrogrypossis have extremely stiff joints and have a lot of pain with movement, but his seems to be fine! He’s a little stiff through his knees and has always had some neck issues, but is doing really well overall. He said that they would not plan to do any surgeries on his hips unless he has hip pain once he gets old while walking, and even then that may not be our best route since it’s such a hit or miss surgery. In order to fix them they would have to pull the bone down (his sit up behind the socket that never truly formed) and cut a segment of bone out to make it short enough for the muscle and replace it on the pocket of the hip. Then, he would be in a series of SERIOUS casting to heal the cut bone and try to form a socket on the hip, which may still never happen to the extent that it would need to be pain-free. This is more easily done if it just one side, but becomes much harder when dealing with both hips, since he would be off-balance if they didn’t get it just right. So, he said he may walk with a slight waddle, but all-in-all should be able to walk! We’ll take that! He would like to do a foot surgery sometime next year to help completely correct his foot placement. The boots have helped tremendously in stretching his muscles in his legs, but his feet still turn up significantly. The tendon that runs down your shin and flexes your foot is too tight on Carter and runs toward the inside of his ankle. The surgery will be to snip that tendon on both feet, drill a hole in a bone on the top of the foot, and place the tendon there. Since the bones in the feet are so small right now, he wants to give him some time to grow and develop on his own before they plan a surgery. We’ll follow-up in March to see if he’s got enough bone to work with. Did you know that the typical white male child doesn’t walk until 13 months? Carter will more than likely be behind because of his conditions, but it actually is in our favor, because he’ll hopefully be getting around some, but not enough to be setting him back too far when he’s in casts for 6 weeks! Thankfully these casts will only come above the knee a little ways.

We’ve been out of the hospital for well over 2 months now, and we’re loving it!! I can’t tell you how great it is to be able to enjoy this sweet child at home. Thanks so much for your prayers, and keep ‘em coming!

waiting for Dr. Conklin

showing off his good movement :)

Bottoms Up

The past 2 weeks we have been shoving food in Carter’s mouth every 2 hours while he’s awake. Here’s our “Champion Eating Schedule.”

0630: 2 oz water

0800: 6 oz bottle

1000: 2 oz juice with 3 tbsp oatmeal

1200: 6 oz bottle

1400: 2 oz fruit

1600: 6 oz bottle

1800: 2 oz veggie

2000: 6 oz bottle

I think his tummy has finally stretched and adjusted, because the past couple of days, he’s actually finishing two or three of the four 6-8 oz bottles in a day. The 8 o’clock bedtime bottle usually gets neglected because he’s just TOO tired to eat… but he usually takes at least 3oz. We’re averaging about 22oz of formula now… still not the 24oz they want, but it’s progress :) He’s also getting 2oz of juice and 2oz of water, for a grand total of 24oz of fluid intake. Still, not the 27oz they want… but it’s something!!

He had follow-up labs drawn last Friday to make sure the kalexate adjustment worked. Mary Jane called Monday and said everything looked great, and she’d like us to see our pediatrician in the next couple of weeks to weigh Carter just to make sure he’s not losing. We’re hoping he’ll have gained quite a bit thanks to his new diet!

Carter’s Uncle Greyson’s birthday was Friday, so we went to dinner with them after a busy week. Thank goodness it’s a long weekend! Tuesday, we’re off to Birmingham again for a follow-up with General Surgery. We “missed” our last appointment due to being admitted, but his resident did come around to see us. Hopefully we can get an MRI scheduled to see what Dr. Harmon thinks about Carter’s muscle function in his lower bowel area… this will be a major determining factor in possible pull-through. Thursday we see the pediatrician for Carter’s 9 month check-up, so hopefully his weight will reflect an improvement so I can call Mary Jane with good news :) The next appointment will be Monday, Oct 17 with Dr. Conklin in Orthopedics. I’m anxious for this appointment, because we’ve only seen him one other time outside of being admitted, and growth is the driving factor for any orthopedic surgeries he may have. At our first follow-up, he said he didn’t expect us to do anything before he was a year old. I’m still praying for a miracle – that the next ultrasound shows his hips in the socket! A girl can hope :) We’re also hoping that his feet have corrected quite a bit from his new boots, which he wears every night to bed without fussing about them!

The next few months will be super busy with the holidays. I’m going to try to update as much as possible, and to capture all of Carter’s firsts – pumpkin patch, Halloween, trip to Georgia for Thanksgiving, CHRISTMAS! He’s even going to his first birthday party, his friend Kade’s first birthday, next weekend! Pray for me… I have to go to Maryland/DC for a week in November for work, and it’s stressing me! I know Carter will be fine without me, but I’m sure going to miss him!

 still no teeth!

 getting BIG!

 going for a walk!

little pumpkin

It's been a while...

Life has finally calmed down to a sense of normalcy in the Piatt household. We had a false alarm UTI the Tuesday before the wedding :) That was stressful. We went in for our regular nephrology appointment and his panels showed elevated white cell counts... SO they did a urinalysis and admitted us. They were talking about us maybe getting out Thursday... or Friday... or Saturday. AHH! To our surprise, on Wednesday (after I drove back to Prattville for an appointment) they discharged us saying that he had contaminates in his urine, but that it probably always looks like that due to the vesicostomy. We were so thankful that he was able to be at the wedding... here's a picture of him in his tux with his Aunt Me-Me!

His Meemer Kim kept him while we went on our short honeymoon to Destin, and the Thursday after we got back we went to Bham to meet our new general surgery doctor, Mac Harmon. He gave us alot of information about the possibility of reversing Carter's ostomy. He says he's seen many cases (he's been at Children's Bham for a long time) and that there's no for sure answer as to whether or not a reversal would work well or not for each individual. Most of the time they surgery is a leap of faith, and if sensation is a problem, a colostomy can always be replaced. He said ultimately it's our call whether or not we want to give it a go - what a burden!! Pray for us to make a wise decision when the time comes. I've been doing some research and hitting as many forums as I can to see what other's experiences have been. He scheduled us for a return visit in August to make sure everything is still going well, and possibly do an MRI to see what kind of muscle tissue Carter has in the areas where his sphincters should be. Josh and I have talked a little bit about it, and if there's not significant signs of muscle, we will probably forego surgery... we don't want him to have to go through any surgeries that wouldn't be beneficial to him long-term. Keep us in your prayers! We've got some big decisions to make! Our next appointment will be in July to see our friends in nephrology and urology.

Just a side note, we've been experimenting with solids, and he's getting the hang of it :) He's a chunky boy, that's for sure. We're around 17 pounds now, 24 inches, and tomorrow he'll be 5 months old!! Time flies!

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!