update for today

Carson is doing well. He had his tracheostomy changed by Dr. Yang today and tolerated it well. He got to go down 1 on his PIP which is the peak inspiratory pressure today. He went down one yesterday so we are thankful and his blood gas this morning was good. They also started nebulizer treatments for his lungs to try to help. He is being changed to feedings every 2 hours rather than continuous. If he refluxs at all, he goes back to continuous feeds. But so far, he is doing great. They are trying to get him to more of a normal feeding schedule. 

Preston, Elizabeth, Carson, and Kellen took their Christmas pictures today. YEAH!!! We can't wait to see them and will post some pictures when we get them. Carson got to wear clothes for the first time today in his pictures. He wasn't very impressed with clothes because he slept the whole time, but he sure looked cute. He also is doing fantastic with range of motion with his neck. He has been able to turn his head all the way to the right which is a huge improvement from past weeks.

Kellen won't go home before Friday, but we believe it will be at least Monday before he goes home. He is doing well, but sometimes has drops in his heart rate. They don't like to send them home until it has been a week without drops in heart rate unless they go home on monitors.

Exciting news, someone donated St. Louis Blues tickets to the NICU. The charge nurse gets to pick out who gets them. They offered them to Elizabeth and Preston, because of how much everyone loves the two of them. Preston and Liz are off to the game right now. I am so happy they are getting away from the hospital to do something fun. 

Have a wonderful Tuesday night!

Posted by Sarah

update for today

Kellen is doing great! He survived his circumcision with no major problems. He did have some bleeding that wouldn't stop but now is doing great. Liz said he is sleeping with one eye open now to make sure no other bad things are going to happen to him. :) Still just eating, growing, and sleeping. They still think they will keep him until at least Friday if not a week from today. 

Carson still has a left shift on his complete blood count, indicating infection. They will continue his antibiotics for 10 days. His G-tube was leaking, but they have that problem fixed. He has done so well with feedings, he gets to have all his IV nutrition shut off today. He is finally just a breast milk baby! He did lose a little weight last night, so they are hoping his lungs will clear some from the loss of fluid. They will keep watching him and we will keep praying. :)

Thank you to all of you for keeping us in your prayers. We appreciate it!

Posted by Sarah

praying and fasting for Carson's healing

Hello all. This is Francie's friend JoAnn from Springfield. Francie wanted to first thank you all for your constant stream of prayers for her twin grandsons and for her whole family. The outcome would have been so different without each one of you!

She also wanted you all to have an update on Carson and is asking for continued prayers. About a week ago Carson's healing seemed to be at a stand still. At that time, in prayer, Francie felt that Carson's continued healing would be aided by prayer and fasting. So she began to fast. Not always from food but from other things too. She said that her most powerful fast was from negative words and reacting in negative ways. She was reminded of St. Terese's "little ways" and began to fast in "little ways with great love for Jesus" and as a prayer for Carson's healing; things like refraining from negativity, not grabbing that quick snack, giving that exta attention to someone when you're in a hurry, letting a car get out of the parking lot before you... Then, a couple of days ago, a friend of Francie's told her that, while in prayer, she felt that by prayer and fasting, Carson would begin to heal again (not knowing of Francie's nudge from God earlier). Wow, the Lord sure made His desires for prayer and fasting very clear!  Edited to add...Francie doesn't know this yet, but I (blog moderator and cousin Ahdra) felt recently that God was asking me to fast for Carson's healing as well.  

Now Francie just found out that Carson has had pneumonia all this time. It began with a staph infection. No wonder the little guy wasn't progressing! So a group of us thought we would join in the effort for prayer and fasting for little Carson and thought we would invite all of you wonderful prayer intercessors to join in if you feel led to do so. I know it's such a busy time of the year. But I also know that I personally am faced with many more opportunities during this time of year, to "fast" from overreacting to stressful situations!! While praying at the chapel yesterday Francie also thought that, in the spirit of Advent (preparing our hearts to receive the Lord more fully into our lives) we could also all add the prayer to simply be a better child of God as we all strive for continued conversion and healing in our personal lives.

Thank you for your continued prayers and for your love poured out in such beautiful ways.

Many blessings during this Advent season!
JoAnn

more prayers needed...Carson has pneumonia

Just wanted to add more specifics about Carson. We just spoke to his doctor and they have decided he has pneumonia. He has coag negative staph which is bascially staph we find on our skin and it has colonized his trach and lungs. He has a left shift on his blood count and haziness on his x-ray, so they are going to extend his antibiotics to at least 10 days. He has been on them for six days. Please be praying Carson can kick this infection and get on the path of weaning! On a funny note, as the neonatologist was talking to us about pneumonia, surgery came by and said, "He is doing great... no problems." It is comical how many people are working on his case and each perspective is very centered on certain things. Surgery is super excited his incisions are doing well but don't worry as much about pneumonia. It is interesting to watch them all work together! Be praying this infection will go away and our little guy can get on his way to going home!

Thank you and we are so blessed to have you in our lives!

Posted by Sarah

update for today

Kellen has decided he is staying with his brother, by golly : ) Really, Kellen is doing well, but they keep planning to discharge him and he just is letting them know he isn't having any of it. A couple days ago, they said he would go home on Monday or Tuesday. Then he decided to not eat as well and drop his heartrate. They then decided maybe Tuesday or Wednesday he could go home. Last night he purposely failed his car seat test. Just kidding, but he had to pass the car seat test and did not. They place him in the car seat for 30 minutes longer than it takes to get home which is 3 hours for Preston and Elizabeth. Premature babies neck muscles are not as strong and as a result, they lose their airway or at least it gets compressed. Kellen's oxygen levels dipped down several times, so it looks like he may not be going home next week : ). This kid is already too smart for his own good. We will see what happens. His weight is 5 lbs 9 ozs. AWESOME!!! He is about to outgrow premie clothes and diapers.

Okay, we need lots of prayers for Carson again. He is cruising along, but just not getting better. His lungs still look quite hazy on x-ray and they aren't exactly sure why he is not getting rid of the fluid on his lungs. They have restarted his lasix to try to get rid of some fluid. There still has not been any culture growth from his trach so they don't think he has an infection. However, he is still on antibiotics just in case. We just need to really pray for healing for his lungs and ability to get off this ventilator. We think part of the problem might be that he is laying down all the time. They are going to start trying to sit him up more, but we will see how he tolerates it. On a positive note, he is up to 13 mL/hour of breast milk and will have his lipid IV shut off tonight. That means he is just getting about 2.5 mL/hour of IV nutrition. His weight is up to 5 lbs 12 oz. He is doing great on peeing and pooping.

Preston and Elizabeth are doing great!!! AMAZING PARENTS!!!

Prayer requests:
Number one is healing for Carson's lungs so we can wean off his ventilator.
Number two is healing for his G-tube and skin around that surgical site.
Number three is healing for his throat and ability to swallow.
Number four is for all the amazing individuals that have been praying so faithfully for my precious nephews.

We love you!

Posted by Sarah

update for today

Well, Kellen is showing his stubbornness. He heard the doctors say he was going home next week and decided he didn't so much like the thought of leaving his brother. So he has decided to not eat as well. :)  We all are pretty impressed with his ability to manipulate at such a young age... ha ha!! Really, he is doing great but hasn't been feeding as well since yesterday.  However, he still doesn't need his tube put back.

Carson is chilling and doing well. He had occupational and physical therapy today. He did well. He is using his pacifier more and it appears that he does have fairly symmetric suck from both his right and left side of his mouth. His tongue deviates a little to the left, but it is encouraging that he can still suck with both sides of his mouth. He also is doing better with swallowing his saliva rather than drooling all the time. :)  We are just pleased he is doing so well.

Again, we are all overwhelmed with everyone's generosity and kindness. Thank you and God bless you!

Posted by Sarah

update for today

December here we come! :)  The update is pretty short today. Kellen has done so well with his weight gain and feedings, he gets his NG tube taken out of his nose...YIPEEE!!!! He is going to be a happy little boy. The doctors said he will definitely be going home next week! YEAH!!!

Carson is up to 11 mLs per hour on his feeds and his IV nutrition is down to 4 mL/hour. This is really good b/c we would like to get him off his IV nutrition and on just breastmilk. All in good time. From the standpoint of ventilation, the doctors are giving him a week vacation and he gets to coast. After a week, he better be ready to roll because everyone is going to want to get back on the weaning band wagon. :)  He appears to be doing well from the standpoint of infection and will just be finishing his antibiotics.

Next Tuesday will be the one month birthdays and Preston and Liz plan to take a Christmas photo. Can't wait to see it! ;)

We hope all of you are doing well and getting ready to celebrate a fun weekend!!!