Monday, May 23, 2011

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.


video

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 :)

Monday, May 9, 2011

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.

Sunday, May 8, 2011

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.

Saturday, May 7, 2011

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 .

Sunday, May 1, 2011

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!

Prenatal Post

Since I wasn't able to start my blog when I wanted to, I'll catch everyone up in this post... at least on the prenatal part of our adventure.

I found out I was pregnant on May 7th, 2010. I had my first OB appointment with Dr. Martin of OB-Gyn Associates of Montgomery on June 7th, and they did an ultrasound to confirm my due date. Everything was normal, and we had a healthy little "Nugget" as I referred to him at first. (Later on, we started referring to him as "Slick" since his initials were BP (Baby Piatt) and BP caused the giant oil slick in the gulf.) On August 30th, I had my 20 week ultrasound. Typically this ultrasound is where you find out the gender, and I was so excited to finally know so I could start some serious shopping! You never think going in that the ultrasound tech is going to freak because she can't see anything. My mom, dad, and Josh were there for the US, and as soon as she started we could tell something wasn't right. She said she was going to ask the doctor something, and would be back. This resulted in automatic tears for me (and my mom). She came back, took several more pictures, and took us to the room to wait for Dr. Martin. He explained that they thought the baby had either an omphalocele or gastroschisis. Both conditions consist of organs being outside of the baby's body. He said there was nothing to worry about, that it could be very easily taken care of, but that they wanted me to go to Birmingham to have a targeted US done just to make sure the diagnosis was correct. So we made our first trip to Birmingham on September 9th, and saw Dr. Owen and his resident Dr. Wetta. They performed the US and said that it was definitely not gastroschisis or an omphalocele, but that the baby's bladder was not releasing fluid, possibly due to a blockage. At this point, we still didn't know whether Slick as a boy or a girl, and they said that knowing could help them determine exactly what was going on. There was very little amniotic fluid around the baby, since it was all inside his bladder, which was extremely stretched and protruding. This was scary, because the amniotic fluid cycle is what develops a baby's lungs. They swallow the fluid, and then literally pee it back out swallow it again. Another aspect was that there might be major kidney damage done from the bladder not functioning correctly. They decided to do an amniocentesis to draw as much fluid off as possible and to run some tests for kidney function and chromosome defects. This would also determine gender, and give them a better idea of what was going on. They said blockages are very common in little boys, but that if it was a girl the defects could be much more drastic, such as cloacal exstrophy. We went back for the follow-up and test results on September 14th, and were thrilled to find that we were having a sweet little boy, and that he had normal chromosomes and great kidney function with consideration to his condition and the fact that he had only one kidney! They explained to me that they could perform a procedure to place a shunt through Carter's bladder wall that would help it drain. We were willing to do whatever they deemed necessary to get Carter here as healthy as possible. So, with much prayer, and much anxiety (I HATE NEEDLES!) we went back to Birmingham two days later for the procedure. First, they did an amnioinfusion to give Carter some fluid around him so they'd have some room to work. Right after they made the incision and began to enter with the shunt, they watched on ultrasound as his bladder began to drain on it's own. The doctors were baffled! They decided to pull back and not place the shunt and see if he could cycle fluid on his own. We were on pins and needles until our follow up a week later on September 23rd. The US confirmed that Carter had a hole somewhere near his umbilical cord that was allowing the fluid to drain. Dr. Owen explained that while it wasn't normal drainage, it was better than no drainage. Our next big appointment was on October 7th at UAB. This was a renal consultation with doctors from Children's, where Carter would be transferred almost immediately after birth for surgery to repair his blockage. Dr. Herndon, urologist, and Mary Jane Gillum, nephrology CRNP, watched our US and told us what to expect after Carter was born and for the first few years of his life. Dr. Herndon was confident that the repair could be made, and said they see this alot. Mary Jane told us that they wouldn't be able to give an exact plan for his kidney until he got here, but that we could be in the hospital for two weeks or two months, that it could have nearly perfect function, or we may end up on dialysis - there was just no way to know! This consultation really gave us some peace, because these experts seemed so at ease with his condition.

I went to UAB for ultrasounds every two weeks or so until December 1st. At this appointment my fluid started looking low, but Dr. Owen said that from there on out I could just have ultrasounds done in Montgomery. Carter's fluid level dropped drastically from 12.8cm on December 6th, to 5.6cm on December 13th. 5cm is when they typically consider delivering. Dr. Martin sent me to Baptist East to be hooked up to the monitors overnight. I guzzled water all night, and by my US in the morning it was back up to 8.9cm. I had my fluid checked every three days or so, and I drowned myself drinking so much water. On December 27th, they checked me - only 1/2cm dilated - and my fluid was low again, so I had to be monitored for a few hours again. I was SO ready to deliver! I went to my January 6th appointment at the wrong time, and Dr. Martin was already gone. His sweet nurse, Kathy, called him and asked him to talk to the doctors at UAB about setting up my inducement (this was after a hug and some tears). Dr. Martin made the call, and they gave me a date! January 10th, and 7am, we were to report to Birmingham!

On January 9th, Alabama got some major snow. Me, Josh, my Mom, and my Aunt Melanie went up the night before and stayed in a hotel less than a mile from the hospital. The next morning, the snow was so thick that we were scared to try to drive. I was determined to deliver even if I had to walk to the hospital! We managed to catch a shuttle that was transporting nurses and we made it there on time. The greatest part of my labor was that I had the same nurse that I had for my shunt procedure. Kelly was such a blessing! She helped me through 3 hours of being stuck on, and encouraged me when I couldn't get the epidural (rotational scoliosis). Unfortunately, she got off before anything got too bad! Everything else is a blur... and Carter was delivered at 5:35am, January 11th. I saw him from across the room, and heard his sweet whimpy cry, and then they wheeled him to the NICU to be kept sterile, and ready for surgery.

Better Late than Never

While I was pregnant with Carter, after I found out about our problems, I decided I would start a blog. It never happened. School, work, Josh, and the total exhaustion pregnancy plagued me with kept it from being started. After I had Carter I told myself, "okay, now you need to start, so you remember all of these wonderful and terrifying experiences." Not surprisingly, it never happened. Throw a baby, a hospital, and a big city in the mix and your available time becomes negative 5 billion hours. SO, all that being said, I'm hoping that making this first post will motivate me to keep up with this to remember the details of our little family's adventures.