This week has shown some progress, which is very encouraging for all of us. Carson weighs 15 lbs 3.5 oz and Kellen weighs 14 lbs. Carson’s pediatric trach came last Tuesday. It is slightly longer than the neonate trach he had. When Carson saw Dr. Costa, it was found he had more tracheomalacia (floppiness to his trachea resulting in the trachea closing off with each breath). After we changed to his longer trach, Carson seems to be doing better. He has rested really well and the last few days has required about 1 liter less oxygen on his trach collar than he has in the past few weeks. We were all encouraged with this. In addition, Carson and Kellen seem to have taken off with chattering and talking to anyone that will listen. It has been music to all of our ears. We continue to ask for prayers for protection over Carson’s little brain and body. There continue to be many situations that could be problematic for him, and we just pray for wisdom for all that are involved in his care to keep him as safe and healthy as possible. Carson has developed another bump on his chest that doctors believe is a hemangioma. His tumor markers are down, but it is concerning to us that he now has three of these bumps on his chest. We have a nursery check-up at the NICU at Cardinal Glennon in about 2 weeks for Carson and Kellen. We plan to talk to Dr. Cerny, the neonatologist, about the situation with the bumps. So far, no one is exactly certain of whether to be concerned or not. From our research, if they are hemangiomas, it really isn’t a big deal unless they continue to grow in size. Every day has brought blessings from these two boys and we continue to be completely amazed at all God has given us. Thank you again for all your prayers. We also want to wish the boys' great-grandmother Florence Hermesch a happy birthday! It is our first without her here on Earth, but we know she is praying intently in Heaven.

Happy Easter and Happy 5 months!

Happy to Easter to all! God has blessed us so much with the gift of His Son’s life and saving us all from sin. God has blessed us above and beyond all that with our two sweet little boys. We are so grateful. We had a wonderful week and weekend with family. It was a blessing to have Clarks and Bunches in Dexter for our Easter celebration. Carson and Kellen got to start the tradition of finding their Easter basket with a little help from Mommy and Daddy. Tomorrow, Carson will make another long trip to St. Louis to see Dr. Yang, the physician that removed the cervical teratoma. We are praying it is an uneventful 3 hour trip to and from the 10-15 minute doctor’s appointment. Gotta love these long drives!!! We did get Carson’s tumor marker results back and they were excellent down from 94 to 54 (the lower the better). We are still waiting for the longer trach. Hopefully, it will help prevent Carson’s trachea from collapsing with each breath and allow us to wean us oxygen. We just weighed the boys and Carson has hit the next milestone...he is now 15 lbs and Kellen is following at 13 lbs 11.5 oz. We are truly proud of these boys! Just in the last week, Carson has seemed to really start smiling and talking more! His voice is truly music to our ears...it is hard to explain how wonderful it is to hear his voice when we did not get to hear anything for the first 3 months of his life! Thank you God!

(I'm trying to figure out how to upload a video but I'll have to keep working on it...so for now...here are some pics)

Look what the Easter Bunny brought ; )

Hunting for Easter baskets!

Cousins!

Aunt Amber's first time to hold me

I just want to eat some candy!

Mr. Kellen

5 months old

I found my basket (with the help of Poppy!)

Just hangin' out....

Happy Easter!

Love our country boys!!

Carson and Kellen have had another good week! Carson weighs 14 lbs 5.5 oz and Kellen weighs 13 lbs 8 oz. Carson is still blowing Kellen away with the weight gain challenge, but both are gaining which is the important piece. We are trying to use Carson's passy-muir valve more often, because it normalizes his breathing and to help with speech development. However, it can't be worn while he is sleeping so it seems to go off and on since Carson is the king of cat naps. First Steps (which is Missouri's Early Intervention Program) started with Carson this week. He will receive Speech and Physical Therapy once a week. Carson has not been doing very well with a bottle so we are going to attempt rice cereal and see if he does any better with that. It would be very nice to get some sort of nutrition by mouth so the G tube can be removed. And our amazing pediatrician stopped by the house yesterday to take a look at a rash Carson had as well as a small bump on his chest. The pediatrician thought the rash was just heat rash, but gave us something to prevent yeast, because of the high humidity and heat being blown onto that area via the trach collar. He believes the bump is a hemangioma... Carson has one other one on his bottom, so we will just keep watching those. They are benign unless they continue to get larger and troublesome from the standpoint of size. Typically, they grow for the first year of life, so for right now we are just going to watch it. Carson has had his tumor markers drawn, but we still don't have the results yet. Once we have those, I think we will all feel a little better about the nodule on his chest. A praise...Kellen finally pooped with only assistance from apple juice (we've been having several day periods without any bowel movements)...I know, I know...the things we get excited about : )

Prayer requests...
1) Improved feeding by mouth for Carson...so we can eventually remove the Gtube
2) Continued healing of Carson's body...lungs, the respiratory infection, and no tumor recurrences
3) Guidance of the therapists that will be working with Carson to find ways to help him and us as much as possible
4) Improved digestive tract motility for Kellen : )
5) Continued prayer for good nurses for Carson

Telling Mimi a story...

In honor of Great Grandma and Grandpa Hermesch
and Uncle Ferdy

Proud Daddy

Carson: "What just a minute Mom...I'm not ready"
Kellen: "Let's just get this over with"

Mimi and Papa Clark

All smiles...He wasn't as happy after the KU win last night!

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