Fearfully Made

Carter is now in P-2 at Victory, and he absolutely loves it. He has three 15 minute classes every day and he is learning so much! His first class is Bible, and they learn a verse every week. Last week he came home with his verse card... one of my favorites:

I will praise You, for I am fearfully and wonderfully made; 

- Psalm 139:14a

I can't think of a better verse for Carter to devote to heart than this one. I know as he grows older he'll question why he's different from other children. He's already starting to realize that others don't have bags, that he doesn't have a belly button, and that the older children go to the potty. I never want him to question the fact that he was made perfectly in the sight of God, and that we wouldn't change a thing about him. Obviously if there are medical advances made that will benefit his quality of life, we'll pursue those avenues, but regardless he will be loved just as he is. When I think about this verse... I've always been baffled as to the meaning of "fearfully." I was sure God didn't want us to fear our existence in this world... so I took to the interwebs to find an original translation of the word. This is what I found:

"In the original Hebrew text, the word 'fearfully' means: with great reverence and heart-felt interest and respect. The word 'wonderfully' means: unique, set apart, uniquely marvelous."

There you have it. Not only are we made in the image of an Almighty God, but He made each of us with great reverence and heart-felt interest. Each of us are unique and marvelous in our own way, and most importantly, we are LOVED beyond measure. With that, I'd submit to you that Carter's birth defects are not defects at all, but rather blessings that have allowed us to experience the healing power of our Lord, and have enabled us to share His work in our life through this amazing child. My prayer is that every time Carter sees one of his scars, he remembers that Jesus suffered worse on the cross to make sure he had a way to an eternity in Heaven, and that God made him exactly the way he is for a purpose that may not yet be known. God makes no mistakes.

Train up a child...

Train up a child in the way he should go:

and when he is old, he will not depart from it

Proverbs 22:6

 

Being healthy is important to our family. Sure, we may eat junk sometimes - but for the most part we take good care of our bodies. Josh and I both want Carter to understand the importance of health, regardless of his medical issues. We want him to learn about his deficiencies and how to overcome them, whether it's with his kidney, his colon, or his mobility. While he may be limited when it comes to physical activities like contact sports, we want him to find things he enjoys that better his body and make him strong. I hope we'll always be good role models when it comes to health, and I hope we give him good exposure to positive body image and good nutrition. He loves to go to the gym with us and watch everyone lifting and running, and likes to play with the equipment. We're very thankful for our Crossfit friends and the positive influence they are on our family.

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 :)

Heaven's Very Special Child

A special friend sent me this poem, which is so fitting for our family. This week I have needed much encouragement, and this reminded me that I am here for a very special reason. God's plan is perfect in every way.

Heaven's Very Special Child

A meeting was held quite far from Earth!

It's time again for another birth.

Said the angels to the Lord above,

"This Special Child will need much love.

His progress may be very slow,

Accomplishment he may not show.

And he'll require extra care

From the folks he meets down there.

He may not run or laugh or play;

His thoughts may seem quite far away.

In many ways he won't adapt

And he'll be known as handicapped.

So let's be careful where he's sent.

We want his life to be content.

Please, Lord, find the parents who

Will do a special job for You.

They will not realize right away

The leading role they're asked to play.

But with this child sent from above

Comes stronger faith and richer love.

And soon they'll know the privilege given

In caring for their gift from Heaven.

Their precious charge so meek and mild

Is Heaven's Very Special Child."

Written by Edna Massimilla

ONE

Guess who turned ONE today?! That's right - CARTER! It's hard to believe that a year ago we were learning of the details of Carter's condition. It's all such a blur. I remember visiting him in the RNICU at UAB, where they kept him sterile and stabile. They called to tell us they were transporting him across the street to Children's NICU. Then they called to let us know he was settled and we could visit over there. They gave me a temporary discharge and wheeled me to the truck. We got a quick run-down of NICU do's and don'ts from our nurse. After that there were phone calls to my hospital room to inform us of his first surgery and receive my consent. I had not even done any research on his condition, I only knew that he was in the hands of an experienced doctor and a mighty God, and prayed they'd take care of my baby. They called again after surgery to let us know how it went - perfect. He recovered quickly. All of this happened in the first 2 days. I was discharged, and we began our Birmingham adventure as NICU parents, visiting as much as we were able, driving home as little as possible, and thanking the Lord for the Ronald McDonald House and amazing friends, co-workers, and family for allowing us those options. For one whole month my sweet boy was in the NICU. Little things excited us... like the nurses telling us he could wear clothes finally, or his graduation from an incubator to a crib, and a new name tag a nurse took her time to make. One month, three surgeries, and one infection later, we were bringing home a healthy boy with a colostomy, vesicostomy, and a pretty line of stitches down his back. We've had ups and downs for the remaining 11 months... times where we never thought we'd be well and at home for the back-to-back infections, and times where he seemed like the most healthy and happy child on the planet and we couldn't even picture him in the hospital with an IV in his scalp. He's been such a trooper... a truly tough little man. Now he has three teeth, a headful of hair, and he can army crawl and roll like crazy. He laughs and gives funny looks, and hates vegetables. He can quack like a duck, and bok like a chicken. He can hold his "Little Light of Mine" up and make the Spider that goes up the water spout. He loves to patty cake, and gives the best mouth-wide-open-wet-sloppy kisses. He has brought Josh and I such joy and fulfillment, and I can't fathom my world without him. Happy birthday, sweet boy.

 I had Carter's teacher snap this picture when I dropped him off at daycare today... I'm typically behind the camera.

Carter's new bike. Josh couldn't wait til the party to let him have it! 

 So cool!

He looks like a pro. 

Taking it for a spin.

Watching Sesame Street for the first time - ZONED. 

"Are y'all watching this?!"

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!

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.

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 .