father's day & more

Josh's first Father's Day was nice :) My mom was out of town with Greyson, so we cooked out with my dad. He got Josh a Porterhouse... amazing hunk of meat. Tebow and Mav got Josh's leftovers :)

Josh got a red PS3 controller for his gift. One of the gifts we got my dad was this picture of Carter framed.

While Meemer was out of town we took alot of pictures to text to her... here are some of the best ones.

He's getting very independent... he doesn't want help with ANYTHING. 

Bright lights!

He likes to take naps in our bed on the weekends :) and so do I!

Carter is almost 6 months old now! Time flies! We've managed to be out of the hospital and UTI free for over a month now - what a blessing!! Maybe it's his body growing and adjusting, or it could be our new macrobid suspension... but something is working to our benefit! Our next appointment is July 18th for urology and nephrology, and they'll be doing another renal ultrasound to make sure everything still looks the same. I'm anxious to see how his panels go... last time we were in, the nutritionist said that for his solitary kidney he needed to be taking in 40 oz of formula a day. On a good day we get 35... most days it's more like 27-30. Everyone else's doctors have told them to cut back on formula and supplement with more baby food! Carter's doing the food thing, but we don't give him a whole lot because it's already hard enough to force formula down him when he's not full. His urination seems to have decreased... but not enough for me to worry. I'm sure they'll dilate his urinary stoma again when we go in July. We saw physical therapy at our last nephrology appointment and got some new boots :) he's been wearing them most nights to bed, and his feet have made alot of progress. His right foot is really loose, and he can even hold it straight for a few seconds after I've stretched him. His left is still pretty stiff, but has made good progress. He's starting to put weight on his legs and feet when we hold him up, so we've gotta get those suckers straightened out so he can walk when the time comes! Not sure if it was mentioned in the last post... but we switched to Victory for daycare... and we are LOVING it! We don't have to worry about him, and I know he's getting great care! One of my best friends works there every other week for a couple of days, and a few others that I grew up with work there also.  :) Plus, it's cool that Carter's care is being overseen by the same director that was there when I was little - Mrs Joyce Parker! Well, I'm through rambling for now. I hope everyone's enjoying this hot summer!

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!

Playing Catch-up

This is a catch-up post :) Our little family has been busy! We only did a 4 day stay for our UTI, so we came home on Thursday. Saturday, my dad and I graduated! I am now officially a college grad - proud owner of a bachelor's degree from Auburn Montgomery. We were so glad Carter was better so he and Josh could both be there. Our week after that was pretty relaxed. He got to try out his bouncy seat, and he LOVES it. And of course, Meemer gave him a bath while we were hanging out over there.

He turned 4 months old while we were in the hospital, so, after clearing it with our nephrologist, we started rice cereal last Friday! He's taken really well to it.

 Let me tell you 'bout my best friend!! :)

Carter stayed with his Meemer Saturday night while Josh was at work and I had my bachelorette party in PC. He had a great time, and Mom had a "first" - Carter's bag started leaking and she had to change it by herself! At least now she's gotten it out of the way so it won't be as stressful for her the next time :)

Carter loves Josh so much. He gets so vocal with him! Here's a video of bath time... he makes alot of noises when he's on his belly.

Tomorrow we head up to Children's to get some new boots from physical therapy, and check in with our nephrologist for a renal panel. Pray that his numbers are good - the wedding is this Saturday, so we need a healthy, happy boy :)

Psalm 30:11-12

I took Carter to Dr Carlile this morning to check things out since he was still running fever. Guess what the culprit is? A urinary tract infection!! Surprise, surprise! They called our urologist, Dr Joseph, up at Children's, and they decided they wanted us to come to clinic to be admitted. My mom, the greatest Meemer in the world, tagged along since Josh is at work. Once we got to clinic, they took another sample and dilated the stoma of his vesicostomy - OUCH! Carter didn't like that at all. They sent us on up to 5NW (praise the Lord - private bath!) and we got settled in. Being a renal patient, Carter has absolutely NO veins because he's been stuck so many times. SO they got the IV therapist (who has stuck him before - she remembered him!!) to place his IV. It's in an aggravating spot right above his ear, where he hits it when he flails his little arm when he's tired or cranky. Speaking of cranky, Carter has been oh-so-fussy all day long. It's been very emotional for me since he's usually so happy! Mom handles him well though, and helped me out so much. She just left to head back to Deatsville. So we've started an antibiotic, and we're getting fluids to avoid dehydration. Now we just have to wait for labs to come back to find out what bug we have this time. Last time we were here for 4ish days. Hopefully we'll repeat that (or shorter!) since I have my undergrad graduation Saturday, and a ton of things I need to get done before the wedding.

I have shed alot of tears today over my sweet boy being sick, but I am so thankful that we're in the shape we're in! We could be so much worse off - and I was reminded of that when I saw a dad in the crosswalk on my way to the parking deck. This dad's baby was admitted to the NICU shortly after Carter was born and started his stay at Children's. They are going on 5 months of "visiting" their child. I was so overwhelmed by thankfulness and the fact that we've had Carter at home for the majority of 3 months, and when we DO have to come to the hospital, we are able to room in and still care for him. God is good! A big thanks to Debbie Brooks for coming down that crosswalk shortly after I saw that dad and started to cry :) It was nice to see a friend and get a hug when my emotions got the better of me.

Carter is finally sleeping after an exhausting day of fever and aggravation - and this mom is heading to bed soon. Please keep Carter in your prayers, and Josh as he travels up tomorrow. Also, send up a prayer for NICU babies everywhere, and their families, as it's hard to leave your child, especially when they're in such a fragile condition. And please pray for Mrs Debbie's daughter, Jada, who has cystic fibrosis and is at Children's right now.

Psalm 30:11-12 Thou hast turned for me my mourning into dancing; Thou hast loosed my sackcloth and girded me with gladness; That my soul may sing praise to Thee, and not be silent. O LORD my God, I will give thanks to Thee forever.

Mother's Day

 Josh helped Carter fingerpaint me a picture for my first Mother's Day :) Those are his feet, minus toes.

& I got flowers...

& Josh got me a card, which is a big deal, since this is the first one in almost four years of dating.

Mother's Day was pretty great, besides that Carter ran fever all weekend. So we will journey to Dr. Carlile, our fearless pediatrician first thing in the a.m.

Little ones to Him belong

A few moments ago I was rocking Carter to sleep and singing "Jesus Loves Me," and when I got to this part, it was hard to sing for crying:

"Little ones to Him belong

They are weak, but He is strong"

Now whether you want to interpret "little ones" as children or the whole human race, it doesn't matter - the fact that God loves us so much that he willingly sent his Son to die for us is overwhelming. His grace is what enables us to have faith, and to me, faith is the greatest source of strength on the planet. Without our faith, Josh and I could not have handled this past year. God has blessed us in so many ways - he's given us an amazing support system, a beautiful boy with an absolutely precious personality, and the chance to share our story with others in an effort to prove that He still works miracles today!

Back to that "amazing support system" part - Josh and I would like to thank everyone that has been there for us. So many prayers have been said for our little family, and so much love has come our way! We were in Joe Mama's the other night, and an MFD firefighter whom Josh had never met, came up to us and told us that he was so glad to see Carter and that he was doing well, and that he has his Sunday school class pray for us every week. We're so thankful that Josh is a part of such a supportive group of men. Anytime we have to check in to the hospital, he'll get ten phone calls from his guys at the station, asking if we need anything and finding out if everything's okay. These men are great, and have become an extension of our family!

I'll wrap up with a picture of this little sleepy angel .

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!