First trip back to St. Louis!

Carson and Kellen have now almost been home for a month and the family is still alive! Woohoo!

Carson is 13lbs 12oz and Kellen is 13lbs 6oz. Carson's total Calories were cut this week and he also survived his first trip back to Cardinal Glennon. It took 3 adults to manage Carson and his equipment...LOL. Carson did amazingly well...he slept through his blood draw but not so much through his endoscopy with Dr. Costa, his ENT. Dr. Costa looked down through his tracheostomy as well as down through his nose. Overall, he was pleased and said things looked good but he is going to give him a pediatric length trach due to the tracheal malacia that is present (tracheal malacia means having a floppy trachea that allows the airway to partially collapse between breaths). By increasing the length of the trach, Carson should be able to breathe easier, require less oxygen, and hopefully feed from the bottle better. Please continue to pray for healing of Carson's lungs and airway as well as improved bottle feedings so the Gtube can eventually be taken out. Dr. Costa said Carson's lungs looked good and he didn't see any infection in the lungs so it is likely only an upper airway viral infection. Tumor markers will be checked by the blood drawn but we will not have the results for several days.

Kellen continues to be a happy little boy. We have had to start him on a medication to help him poop...oh the joys of babies : ) He loves to talk and smile at anyone that will listen and is just about to figure out how to roll over. He spends lots of time under his activity gym starring at the lights (thank you to Aunt Amber and Uncle Mark for the wonderful gift!) Unfortunately he is less interested in eating and thus has fallen behind his brother in weight! He did sustain his first fall...yes, his mother and aunt were less than attentive and he fell out of his swing. Mind you...it was only about 3 inches but he still let us know when it happened! Mom rounded the corner to see him laying cattywampus between his seat and the support bar. Luckily he came out completely unscathed!!

The boys have continued to enjoy the attention they get from both sets of grandparents, their aunts and uncles, and cousins Margo and Meredith!!

Enjoy the pictures below

Daddy's a good snuggle partner!

On Nana's shoulder!

We loved meeting Aunt Maresa and Matthias from Germany

We LOVE our Aunt Sarah!

Uncle James is SO fun!

St. Patty's Day breakfast
"Daddy pinched me and I AM wearing green!"

I have a feeling these 4 will get into lots of trouble in the future : )

Buddies!!

Mr. Carson chatting it up with Aunt Sarah

Oh Aunt Sarah...you are hilarious!!

Chub-a-lub

Sweet Innocence

Kellen's sweet smile!

Our little Indian Chief (carrying on the tradition from our NICU days)

Squeaky clean

weekly update!

Carson and Kellen are doing very well! Liz and Preston took them to their first doctor's appointment together. It was quite an experience. Aunt Sarah got to go along and it was a bit of an entourage getting all the equipment and boys to and from the car to the office. By the time we got there, both boys were pretty upset, but settled right down once we could pick them up. Both were so brave while getting their four-month shots, with only a few tears. 

Carson weighs 13 lbs 5 oz and Kellen weighs 12 lbs 13 oz. In the beginning, the doctors were very concerned Carson wouldn't gain enough weight, but we certainly aren't having that problem anymore. This is definitely a good sign, because it means he isn't having to work so hard to breathe and not burning as many calories. He actually is at the 75 percentile comparing weight to height. We might actually get to decrease the amount of supplement he gets, because he is gaining weight so well. 

Carson has had some yellow drainage around his tracheostomy and been pretty fussy the last few days. They believe he has a respiratory infection and as a result have placed him on antibiotics. He really hasn't required anymore oxygen than before, but we want to resolve the drainage before it becomes serious. 

Kellen is doing fantastic, smiling and happy as ever! Also this week, the Parents As Teachers employee came to see the boys and was very impressed with how well they were doing developmentally. 

We just ask for continued prayers for healing for Carson, specifically being able to go to room air rather than supplemental oxygen. We also continue to pray for guidance for Liz and Preston in making decisions about the boys' care in the future.  

We are hoping to get some more update pictures with next week's update!

weekly update!

The boys have passed their 4-month birthday...March 8th!

And now they have even had their first international visitors! We had a wonderful time with Maresa and Matthias, our dear friends from Germany. Maresa stayed with the Bunch family as an exchange student 12 years ago when Liz and I were in high school. This is her first visit back to see us, and we were thrilled to have both of them come. They are such sweet and kind people. Carson and Kellen were also very happy to meet both of them! 

We have made some progress with the nursing staff and are starting to get into a more regular routine. We continue to pray for God's guidance in that situation and believe with time, it will continue to improve. Preston and Liz continue to astound all of us with their ability to take one day at a time and their incredible patience in the midst of everything. We are so proud of them. 

There have not been any real changes at this time, but both boys are growing and getting stronger. Carson weighs 12 lbs 5 oz and Kellen weighs 12 lbs 8 oz. Kellen has begun sleeping 7 to 8 hours at night...WOOO HOOOO! 

We hope this finds all of you doing very well and seeing God's blessings in your life.

Posted by Sarah

Carson...having a chat with friends

Carson...turning on the CHARM.  Goodness.  

Kellen...chillin' with his homey...the bear

Kellen...munching on those chubby little fingers

update for the week

It has been almost a week since Preston, Liz, Carson, and Kellen made it home. There have been some real ups and down, but we are beyond proud of Preston and Liz and how well they have handled the transitions. If they did not need sleep, everything would be wonderful, because they truly are as well-prepared for emergencies as anyone could be.

We thought the nurses who would be staying with Carson would be trained and able to provide his care...especially during the night (similar to those we had in the NICU). Unfortunately, this has not been the case and none of us feel comfortable leaving Carson to their care unless someone is awake at all times. We are trying to work through these issues, but we ask for your prayers. We certainly need God's direction as to how to go about providing the best care possible for Carson. 

We continue to pray for healing for Carson's lungs. Everything else is perfectly normal, but it truly can be an emergency if he loses his oxygen or plugs off his tube. Continue to prayer for clarity of thought when Liz and Preston are faced with emergencies and need to make quick decisions for Carson and for all the rest of us who spend time with him. 

Bottom line, we know God works miracles and we continue to pray for the miracle of God's protection for Carson until he is fully healed. 

Here is one of the sweetest pictures of both boys sleeping together in the living room. They are precious beyond words.

Posted by Sarah

pictures from home

The first is of Preston, Liz and Carson right after they got back from Carson's first doctor appointment, which went very well! The second picture is of both boys in their very own living room, sleeping peacefully.  No update...just wanted to say everyone is doing well and surviving...with pictures to prove it!  :)

The Clarks have survived 24 hours at home!! WOOHOO! It has not been without its challenges, but God has provided. 

The biggest issue is getting used to the new equipment and also trusting the home health individuals that are watching Carson. They are wonderful ladies, but we don't know them and it is hard to trust them with such serious issues pertaining to Carson. Each day is going to get easier especially as a routine is established. 

Kellen got to try out his mobile over his bed for the first time and loves it. It makes us so happy to hear him giggling and laughing. Carson is putting up with all of us as we try to get better at using all the new equipment that comes with his care, but even with all the changes, he is doing well. 

Please be praying for Liz and Preston. It is somewhat overwhelming right now, but they are doing great at taking it one step at a time.  

Just so everyone is aware, updates will be coming much less frequently, because not as much is changing now that both boys are home. We will try to still update at least once a week or if anything new occurs, but it will be less frequent than when Carson was still in the NICU. 

We truly appreciate all your continued prayers and support. Thank you!!!

home sweet home

And indeed it is.  Preston, Elizabeth, Carson and Kellen will all be sleeping in their own home tonight for the first time!  The Clarks made it home safely at about 3:30PM CST today.  PRAISE JESUS!

Sarah said there was a little simultaneous fussing toward the end of the trip, by both boys in their separate cars, which is kinda cute, but nothing too bad.  The home health care nurses are getting all the machines set up and squared away too.  So, everything is going GREAT!

THANK YOU THANK YOU THANK YOU ALL for all your prayers, kind words and service to this precious family as they worked toward this special day.  And thank you for continuing to pray for Carson's full and complete healing as the days move forward and the Clarks settle into home life!

God bless you all!!!

home sweet home