9 POUNDS 4OUNCES!

Witt gained 2 ounces this week. Although it was not as much as last week, Dr. Lange is pleased. Witt actually has a little "chub" on him! If you put his height and weight on the growth chart (ignore his age) he is actually pretty good. Witt is on the growth chart so he remains very proportional in all his measurements. Next week is a big week...Witt will go to an ENT doctor and the Pulmonary specialist on Thursday! Melanie and Austan are very excited for Witt to finally be seen by pulmonary. They have had to turn his oxygen up over the last week. The good news is it has nothing to do with his heart but now it's time to find out what is going on! We all continue to pray for Witt to eat well. Please also pray that Melanie and Austan find out truth and the educated guesses are able to be kept to a minimum. Its hard enough at times to take in truth without all the "maybes"!!!

Stripping for the weigh-in!

THURSDAY WEIGH-IN

Today Witt has his weekly weigh-in. Yesterday for the first time in 3 weeks, he took all his bottles except the very late night one. Melanie just had to finish that one off with the sippy cup. Melanie and Austan are anxious for this weigh-in. We are grateful once again to Dr. Lange and his staff who welcome Witt each week! I'm sure Witt is in the super light weight division but hopefully still packing on the ounces! We will post his weight as soon as we can.

GREAT NEWS AND BAD NEWS TURNED GREAT!!!

Melanie and Austan got great news from the cardiologist...Witt's heart is in great working order again! The valve is working very close to perfect so he does not need to take any more heart medicine. Their attention is now turned to what is up with his oxygen saturation. Witt's oxygen had to be turned back up to 1/4 and we now know it was not from the leaky valve. Witt was born with lungs that are small even for his size. His lungs have grown in proportion to his other growth which still leaves his lungs small. This could have something to do with his need of oxygen or it still could simply be from the virus that put him in the hospital over Christmas. March 5th Witt has an appointment with a pulmonary specialist. Melanie and Austan will hopefully start getting some answers to the lung/oxygen issues. The great and awesome thing about the God we worship is that He knows it all....He has all the answers....He has all the puzzle pieces and HE IS IN CONTROL!!! Witt will also see an ear, nose and throat specialist next week to evaluate his airways and to check if he is aspirating at all. We are still praying for wisdom for Witt's eating. He continues to take an average of 1 ounce out of a bottle then has to finish with a sippy cup.
Now, on to what last September was viewed as bad news for Melanie and Austan but now is great news! For those who don't know, Melanie's and Austan's house received a lot of damage in hurrican Ike. 2 huge tress fell on their house. The nursery that was ready and waiting for Witt received the most damage. We all were broken hearted for them. None of our houses received any damage...just Mel's and Austan's and especially the nursery. I remember telling God: "why not my house?" They already knew there were going to be issues with their baby and now there is no house to bring him home to!! Of course, it has been a huge blessing to have Austan, Mel and Witt living with us. And the great news is that they just found out that the insurance company (an engineer will confirm this) does agree that the entire house needs to be torn down and they now can rebuild! This is great...they can make changes that they have wanted to and probably even add on! It seemed so terrible at the time and so unfair but today they see it as a complete blessing. This is why we have to trust in God...trust in the only One who has all the knowledge...the only One that truly knows what is or will be best. We have to trust in God when we don't see the light at the end of the tunnel or we might not even see the tunnel, just darkness! God does know all and He does know what's best...that's Somebody to trust in!

APPOINTMENT

Witt has an 8:30 cardiology appointment this morning! He is back on his heart medicine because Melanie has to turn the oxygen back up. I believe Witt will have another echo cardiogram today. Asking God to continue to not only touch Witt's life but every doctor, nurse that Witt comes in contact with!!!

LITTLE MISTER INDEPENDENT

Witt seems to be exerting his independence when it comes to eating! Mel is struggling to get him to eat enough and is having to try a combination of bottle and sippy cup. Please pray that Witt will take it easy on his sweet mommy and eat up!!! It's so frustrating for a mom to try to figure out all the "tricks" to make baby happy...please pray that Witt will cooperate with Mel!!!

9lbs 2 ounces!!!!

Witt gained 6 ounces in 7 days. That's with an ER visit thrown in and some hard feedings! He is now 9lbs 2oz! Pretty hard to deny God at work here!!!

EATING AND WEIGHING

Witt needs prayer for his eating! It is such a struggle now to get him to take his bottle. One or two on them a day might be easier but for the most part he is really not interested. Late last night Melanie finally used a sippy cup and "poured" several ounces into him. He seems to take the very early morning bottle okay but after that its tough. Witt goes for his weekly weigh in today at 12:30. Melanie has tried everything from formula to different style nipples. She will try to talk to the cardiologist today to ask if Witt could be off the Enalapril (heart medication) for a couple of days to see if that really makes a difference. The only day this week that Witt has eaten the amount he needs and it wasn't hard was Monday after he didn't take the Enalapril for 24 hours. Each day has progressively gotten harder to get Witt to take his bottles. Pray for Melanie too. It's incredibly frustrating. Pray God give her the patience and wisdom to make it through this time!

A SMILE OF THANKS!

Good morning and thank you for all the prayers!

Witt has eaten pretty well today, especially this evening. He is up to 14 1/2 ounces and will still take a couple more bottles!


Witt in his bumbo!

MR. BRIGHT EYES

Today Witt has already taken over 12 ounces with at least 2 more feeds to go! He was not on the heart medicine for 24 hours and had his first smaller dose earlier today. We will see if that has any affect on his eating.

At home and feeling good!

WORN OUT!

A visit to ER wears a little guy out!

GREAT MINDS THINK ALIKE...OR AT LEAST CHERYL AND I DO!

Cheryl and I had the same thought at the same time. We both wanted to let everyone know what was going on. I must have beat Cheryl to the "publish post" button so her post is after my update about last night in the ER.

QUICK UPDATE, Monday 9:00am

Witt was sent home at 2:00am after taking almost 3oz! All of the tests (chest x-ray, ekg, etc) came back unchanged from his previous admission...a good thing! At this point, they're thinking that he isn't tolerating the increased dosage of his heart medicine. I haven't talked with Karen or Mel this morning...I pray that they are getting MUCH needed rest. We will continue to update...please continue to pray!!!

ER AND GOD!

We got home around 3am last night but not with any real information on why Witt has stopped eating. We do however know that he was not in heart failure! Gee, that had never crossed our minds...we were very concerned about dehydration. I think because Witt is a "chromosome baby" and he is on some heart medicine they automatically assume he has major heart problems. He is only on the heart medicine to see if it would help his lungs totally "dry" from when he had the virus. Melanie can trace the beginnings of him not wanting to eat to around 2 weeks ago when we started the Enalapril for the heart. It has gotten worse in the last few days and in that time period they doubled the dose. The cardiologist on call said that they have seen this happen in adults but never in children or babies. However, after not taking the Enalapril for over 12 hours, Witt did take 2 1/2 ounces in one feeding right before we left the hospital which is more than he had taken in any feeding in the last 24 hours. This morning he just sucked down 3 ounces! The cardiologist said Witt's heart is just fine and to cut the dose in half to see if it makes a difference in his appetite. So here we are again in a place where it is very clear that we need God's wisdom. Isn't it ridiculous that any of us ever move out of that "place"! A very interesting thing did happen last night. One of Witt's nurses who said she believed in good and bad karma told us that Witt looked just like her friends daughter who is a trisomy 18 child. This child had major heart surgery (against the doctors advice) that the parents had to fight hard for and is now 14 years old. What I found very interesting is that Witt does very much have the outward characteristics of a trisomy 18 baby but if you remember back to when he was born we asked God to change Witt's chromosomes...to rearrange them. We did not want Witt to be labeled as a trisomy 18 baby. If any surgery was needed the doctors pretty much refuse to do it because the life expectancy of a trisomy 18 baby is very short. Mel and Austan were told Witt would die within a week or 2 because his heart valves hadn't closed at birth and they would not do the surgery to correct it. So we waited and waited for the results. Witt's chromosome test revealed he is the very rare trisomy 1 and because of that the doctors treat him as normal. There is no information on the life expectancy of a trisomy 1 baby so the doctor's mindset is as it would be with any baby with normal chromosomes. In the midst of waiting for those results, Witt's valves miraculously closed and his heart was declared normal. I am convinced that God Himself healed Witt's heart and that God rearranged Witt's chromosomes so he wouldn't be labeled. The great thing is that I was able to share this with the nurse who's friend had the trisomy 18 baby and strongly believed in karma. Oh, I believe in Jesus, the Christ! I believe in the One who was crucified for me and rose again that I might live. I believe in the God who created us and has the power to at anytime "recreate" us as He has done with Witt. I believe in God the Spirit who gives us wisdom and will direct Mel and Austan's every step in raising Witt. I believe in God the Father who put us in the ER last night not only for Witt's sake but for that nurse's sake. I believe in God who desires that nobody (not even a nurse who right now believes in karma over Him) should perish but that all would come to Him through Christ. I believe in the God of my salvation who is ultimately in control of every detail (down to the the chromosomes) of Witt's and all our lives!

UPDATE Sunday, 10:00pm

I've talked with Karen several times but haven't updated because we really don't have any answers..."status quo" really. As I thought about what to post, it dawned on me that, although, this is a mystery to US it is certainly NOT a mystery to our God! For that, I'm eternally grateful...and, in awe, to be precise! So, as we await, yet again, the results of countless tests, it's my fervent prayer that each and every one of us will receive the lessons that God is teaching us through Witt and through everything and everyone we encounter in our lives. And, I also came to the realization that there is NO "status quo" with our God!!! He is working mightily through our Witt even as He asks us to wait patiently and faithfully...our God does NOT wait! He's a "mover and a shaker!"
In His Precioius Name! ~Cheryl

UPDATE Sunday, 6:00pm

Please join us as we pray for sweet Witt! He has not eaten much at all in the past 24 hours so Mel and Austan have taken him down to the ER and are waiting for triage. Karen says that he has been very happy and alert but the risk of dehydration is so serious in such a little one. SO, please pray that they are able to take him back quickly!!! Please pray that the doctors and nurses that treat Witt will make a thorough and proper diagnosis...and, pray that their lives will be forever changed by our Father through Witt! And, please pray for Mel and Austan...for peace, strength and encouragement. We will keep you updated regularly!

As always, thank you, thank you, thank you for your prayers and support!!!
~Cheryl

PLEASE PRAY!

Please pray that Witt will begin taking his bottle again. Over the last 2 weeks he has periodically refused to finish bottles. Now he hasn't finished the last 4. He has only taken 2 ounces at the most each feeding. Witt needs to be taking 3-4 ounces each time for his weight and a total of at least 13-15 ounces so he won't become dehydrated because of the diuretic he is on. Pray that he will stay hydrated and gain weight. Dr. Lange mentioned last week that Witt might have to go on a feeding tube. I found myself this morning asking God what I needed to do...fast, pray more, more diligent quiet time...what was my part? God reminded me that in that sense, I have no part. God is God and I have no part in that! Those things have to do with my relationship to Him and yes could affect my prayer life to a point but this is not happening because we are spiritually doing something wrong. Today, now, I am asking God with all the authority of Jesus Christ to make me hunger and thirst for Him, for His righteousness, to be rightly related to Him because that's what I need to "grow" and I am asking God to make Witt hunger and thirst for breast milk because that's what he needs to grow....to the glory of Christ!!!

DR. LANGE

Witt had his pediatrician visit today. Dr. Lange thought Witt "looked" better than he ever has. Witt's lungs and heart sounded better. The concern is Witt's weight. He gained 4 ounces and now weighs 8lbs 12 ounces. Melanie and Austan were told by the genetic counselors when he was a couple of weeks old that he would make his own growth curve. They said that kids with genetic issues are normally smaller. The issue for Dr. Lange is to try to figure out Witt's growth curve. Witt is proportionally growing great...he's just small! He is definitely not malnourished. Melanie will take Witt in once a week to Dr. Lange's office for a weigh in. Thursdays will now become weigh in day! Please pray that Witt will continue to gain weight...that his whole body just continues to grow! Also, pray for Dr. Lange. He is without a doubt the perfect pediatrician for Witt. Amazing how God knew!!! Dr. Lange is so patient and spends so much time with Witt. I know he agonizes over every decision concerning Witt. Pray that God give him wisdom and peace as he tries to decide what is best for Witt. We desires God's best for Witt!!

MAJESTIC VIEW!

I have been blessed to have had quiet times in many places...from the snowy Rocky Mountains to the upper deck of a cruise ship with nothing but blue waters everywhere. This however is the greatest view I have ever been blessed to have while sitting at the feet of Christ! Today I prayed for Witt out of Psalm 109:26-27: "Help Witt, O Lord my God; save Witt according to Your lovingkindness. And let them know that this is Your hand; You, Lord have done it."

My quiet time view!!!

Witt has a pediatrician appointment tomorrow. We are praying for a great weight gain. There is some concern because Witt hasn't eaten very well for the last several days. Today, however he is eating very well! He needs to take 21 to 24 ounces per day and its tough sometimes to get him to take 21. Witt just finished 4 ounces!

AHHHHHHHHHHHHH!!!!!!!!!!!!!!!!

CARDIOLOGY APPOINTMENT

The cardiologists appointment went well today. Witt's heart is "quieter" which means there is less blood flowing the wrong way (the leaky valve). His lungs also sounded good. They did not do an x-ray to see if the lungs are still wet. In 4 weeks Witt will have another echo cardiogram and a chest x-ray. The cardiologists are increasing Witt's dosage (since he tolerated the lower dose just fine) to a therapeutic dosage. They also recommended that Witt go to an ear, nose and throat doctor. The ENT could check that part of Witt's anatomy and maybe help explain or rule out why he stays congested sounding. Melanie has also heard from the pulmonary specialists and is trying to schedule an appointment with them. Please pray that Witt begin eating again. The last couple of days he has not eaten well at all and its so important for his tiny (but very cute!) body get plenty of nourishment. He has begun to sleep pretty long at night but Melanie may need to wake him up to feed if he doesn't start eating more again during the day. He normally takes 3-4 ounces but the past couple of days he is taking closer to 2 ounces at some of the feedings. His stomach seems to be bothering him more. Witt goes to the pediatrician on Thursday. We are anxious for this weigh in! I know I have said this before but I am so grateful that we have access to the One who created Witt, to the One who sustains Witt, to the One who is in control of even Witt's stomach. I am grateful that through Christ we can run to the throne of grace that God sits upon and petition Him not just for healing but wisdom and peace for Melanie and Austan!

9:00am CARDIOLOGY APPOINTMENT

Tomorrow at 9:00am Witt has a recheck with the cardiologist. We have been able to turn his oxygen down to 1/8 and 1/16 some of the time. He is so close to being off it! Witt has been on the medicine for 2 weeks now for the leaky valve. Melanie is hoping they will x-ray his lungs tomorrow to see how "wet" they are compared to 2 weeks ago. We trust God and His perfect timing...I am hoping, praying that His perfect timing for Witt to be off oxygen is soon!

NEW PICS

Resting in the new king bed

The first outfit Witt owned.

His first pair of shoes

LITTLE MAN AND HIS BEST FRIEND!

GOD IS IN CONTROL...EVEN IN OUR OWN LIVES!

Last night I went back and read the first couple of weeks of Witt’s blog. I am in awe (not shocked because I know all things truly are possible with God) and I am humbled. I am awed and humbled by the very presence, activity and power of God but I am also awed and humbled by all of you who read about and pray for Witt and our family. I was reminded again that God is in control of Witt’s life. God, however, also reminded me that He is equally in control of all of our lives and wants to be equally involved if we would just let Him! I have said this many times, but with Witt it is very apparent the need for God and his reliance on Him. Each of us has the very same need. It’s just with Witt our “blinders” have been removed. Today I ask that you join me in prayers for all of us…that God would remove the “blinders” from our own eyes and let us see that our need for God is no less than Witt’s need and dependence on God in his life. God desires…He is waiting to be as active in our lives as we see Him in Witt’s. He is waiting to impact the world through us just as He is through Witt. How long will we make Him wait? Today will you pray that we live out the gospel and live in its power? Pray that today we are crucified with Christ so that the very life of Christ and all His power can live through us. I believe God is being magnified through Witt’s life…I desire the same for each of us!!!

MAKING PROGRESS!

Witt is making great progress with his oxygen...praise God! He has been 24 hours with it turned down to 1/8 and Melanie even had it set at 1/16. We may never know if it was the heart medicine or Witt's lungs finally healing completely from the virus. What I do know is that no matter the path of medicine, it is still all God! He slept 9 hours last night that allowed Mel to get some much needed sleep!


Sleepy Boy!!



The Cutest Hands!!

CREATED THROUGH CHRIST...FOR CHRIST

It has been one week since we went to the Cardiologists and Witt started on the medicine to help the leaky valve. We haven't really noticed a big change but we find rest in knowing that God is always at work even if we don't see it! Witt continues to need 1/4 to 1/8th oxygen. I have been praying that Christ is the very "air" Witt breathes and that his lungs need no oxygen with that! Yesterday in church a man spoke just quoting scripture. He went through the days of creation but on each day he added other scripture from the Bible. There were incredible pictures to drive home the scriptures he was speaking. At one point, there were pictures of babies still in the womb. Colossians was quoted where its says that all things were created by Christ...all things have been created through Him and for Him. Witt was created by Christ. Witt was created through Christ and for Christ. Not a single cell is misplaced in Witt's body and Witt was created (just like all of us!) to worship Christ! Glory to God Who is the Creator and Sustainer of Witt's life! I pray that in God's perfect timing Witt's lungs are healed and the name of Christ, our Savior, is exalted above all else on earth!

I just noticed that Witt really resembles Jim with his "stand alone" mustache!