CATCHING OUR BREATH!

Witt has had some very uneventful days...that's a good thing! Melanie and Austan have taken him out on errands which is great for all 3 of them. He is getting adjusted to the tube in his stomach and the bigger amount at each feed. Tomorrow is Witt's now somewhat regular appointment with the cardiologist. They will mainly be checking for fluid around his heart and I am sure also looking at the leaky valve. The cardiologist that will perform the cardiac catheter test wants to do the procedure in August. Not sure yet exactly when. I was sharing with Julie(in our Sunday School Class) today that Witt's heart condition is well documented. I am asking God to heal Witt's heart and bring glory to His name! The doctors would be blown away! Witt's oxygen is turned back down to 1/2. It could probably turned down even more. He seems to be breathing much easier! It's during these days that I seem to catch my breath. I don't rely on God less, it's just some days its very apparent that God is bringing me each breath...one breath at a time! I have said this to people before who were going through very very hard circumstances that sometimes its not trying to make it through a day, or through an hour, or even a minute...sometimes its just breathing the next breath. God is the very air we breathe and He does bring the next breath in hard times! As a Christian, just taking the next breath in a horrible situation can give God glory!!!

Wouldn't be Mel's baby without a stuffed dog!!

TAKE HIM OUT TO THE BALLPARK!

This morning Witt had a visit to the surgeons office. Melanie wanted them to recheck his feeding tube and get a little more instruction on how to take care of it. It is healing nicely. I must admit its a little weird to look at a tube just going into his skin! The advantage for Witt having the tube is tremendous. He has gained close to 6 lbs in the time he has had a feeding tube. Yesterday Witt went to his first baseball game! His cousin, Connor, played in an all-star game. If you look closely, you can see Witt napping in the stroller. I didn't say he watched Connor play!

Witt was pretty tuckered out from his outing!

AT HOME

Witt is home and doing great! Yesterday was a lazy day! Witt seems to be adjusting well to the gtube. For now it is actually a tube that comes out several inches from the stomach but in a few weeks Witt will get the "button". This is an in office procedure. The tube that comes out of the stomach will be replaced with a button that is flush with his skin. The feeding tube will attach to that. Hopefully Austan, Mel and Witt will have some normal days enjoying Witt without hospital visits. He will have the cardiac catheter procedure sometime mid July. God continues to amaze me! I am not sure that's the right wording. I believe God can do anything...use the medical profession to heal Witt or heal Witt by His touch...change our situation or be our Strength through it. In some ways, I am not shocked by God but I am in awe! I am in awe because He continues to meet our every need and does it in such a way that even in dire circumstances there is still peace and joy. There were times during this last hospital stay that were so hard that I couldn't clear the tears and look upward...all I could do was literally say out loud the name of Christ. God Himself wiped away my tears and turned my gaze back to Him! That leaves me in awe of Him!


Back at home and playing!

All Tuckered Out!!

GOING HOME!

It's a good day when the doctor's agree that it is time for Witt to go home. He has been cleared to go home tonight and we are just waiting on the paperwork that will allow us to leave. We are now just waiting on God's perfect timing.

ECHO CARDIOGRAM TODAY!

Witt appears to be doing better day by day! Today he has an echo cardiogram to make sure there is still no more fluid around the heart. Whenever it is drained there is always a chance that it will come back. If there is not fluid again and Witt continues to tolerate the increased feeds that are once again fortified then he will be going home soon! Melanie and Austan adjust remarkably to Witt's hospital stays. I believe that Melanie and Austan would tell you that they are just doing what they have to do. I tell you that they may not have a choice in Witt being in a hospital but they do have a choice how they handle it. I see them choose God's way and I see them through allowing Witt's story to be told through this blog magnifying the name of Christ. The father from the TV show "Jon and Kate Plus 8" has been quoted as saying that he missed his 20's because of having kids. It's a shame that he doesn't have the maturity that I see in Austan and Melanie. A better show would be "Austan and Melanie plus Witt glorifying God"...that's a show I am privileged to watch on a daily basis!

This would be a great "show" too!!!

This is one of the best "birthday cards" I have ever been sent!

WITT WISHES GRANDMA KAREN HAPPY BIRTHDAY

Happy Birthday to grandmama Karen. Witt and the entire family love her and can't wait to hug her on her day.

When I think of Karen, I think of these three verses in Matthew 5:
Blessed are the merciful,
for they will be shown mercy.
Blessed are the pure in heart,
for they will see God.
Blessed are the peacemakers,
for they will be called sons of God

We love you Karen.

WITT'S GOT A TOOTH!

Witt was moved out of the PICU and back to the PCU (7th)! He is back to a room. AND Witt has a tooth! He certainly has been chewing on things. The nurse discovered it today. Witt seems to be getting back to his baseline. His breathing is not nearly as labored and he's getting back to what is normal. Starting this afternoon, Witt is being given the fortified breast milk on a slow continuous basis. Tuesday will be another echo on his heart. God continuous to carry all of us this hospital stay. More and more I realize how much we need Him...we need His strength...His faithfulness!

The "7" balloon now added to the collection!

Witt's first tooth!

Lynn captured this picture of beautiful Witt!

CUPCAKES FOR US...BREAST MILK FOR WITT!

Its now 12:30am on May 24th. Witt is still in PICU. His breathing is still a little labored and earlier today, or actually what was yesterday, he had a fever. The fever is gone now. The doctors had removed all IV fluids and were just giving him pedialyte but have gone to breast milk because his glucose is dropping. Not sure when he might get to move back to 7th floor PCU and get his own room! Austan is back with Witt now so that Mel can get some sleep.

Annalee and Evan brought some delicious cupcakes (and the most "Delicious Cupcake", Adelaide) to the PICU for a 7 month birthday celebration! This is the day the Lord has made, let us rejoice and be glad in it!

The blur in the second picture is Adelaide's hand going for the cupcake!

Adelaide, Annalee and Melanie!

7 MONTHS OLD!!!

Witt is doing better today...his 7 month birthday! Mel just said Witt is now closer to 1 year than a newborn!! I would say he's had way too many "month birthdays" in the hospital but I am grateful for each one wherever they are! He is still in PICU. I slept in a recliner in the waiting room last but Melanie would not leave Witt's side. She stayed back with him in a straight back chair all night! The doctors started him on a very small amount of pedialyte but are hoping to move pretty quickly to just breast milk...he won't get his normal fortified milk right away. Witt will definitely stay in the PICU tonight. He might be moved back to the PCU tomorrow. Whatever is best for Witt! The doctor's are keeping a close eye on his heart...they want to be sure the fluid doesn't come back. He is breathing much easier today and his osat is staying 99-100 on 1 liter of oxygen.
I'll be honest...yesterday was very hard but God has never left our side. He is still there even in the times that I am angry. He is still there just telling me that He understands. He is still there to increase my faith and carry me! For reasons I may never totally wrap my mind around, He just doesn't give up on me when I give up on Him...and there's mercy!

I met a lady (Candice) in the waiting room whose son (Gage) is in PICU. Gage is 15 and in the process of dying because of heart failure related to a syndrome he was born with. The doctors give him maybe 2 months but the mom feels like it will be sooner. Gage has spent a lot of his life in hospitals. He will not get to go home before his death so they are bringing home to him the best they can. Witt will leave the PICU in the next couple of days and I may not know what happens with Gage. Please, please as you all are so kind to pray for Witt would you pray for Gage, Candice and the entire family. I am praying that Gage is experiencing Christ face to face here and now! That Christ is his Comforter and Peace!

Here are some pictures and video to prove just how cute Witt is...even when he hasn't eaten for 4 days!!!

Austan took this picture last night!

This morning..."hmmm....how can I get outta here?!!"

Hold on Little Buddy!!

IN THE SHADOW OF YOUR WINGS

Austan just came out from Witt's room and said the doctor's removed the ventilator and Witt was doing well on his own. This is great news for Melanie especially. Anytime Witt is ventilated, he is really unable to have his voice and that is not much fun for a mom to be without. The PICU waiting room is fairly busy this evening with many families waiting for the opportunity to be there for their loved ones. Even though you all can't be with us, we always feel the power of your prayers showering us with strength and support. Today especially was a great example of the power of prayer and God's healing hand touching Witt.

Keep me as the apple of your eye; hide me in the shadow of your wings. Psalm 17:8

We love you Witt!

55cc's OF FLUID!

Melanie and Austan just met with the surgeon and Witt's fluid is now completely gone from around the heart. They removed 55cc's of fluid from the sac around the heart and as soon as it was gone Witt's lungs increased in size. They were still waking Witt up and he should be moved to the 3rd floor again as soon as he is able to be moved.

In comparision, in December they removed about 7 cc's of fluid from the same area.

We are relieved that this procedure is done and hopeful that Witt's strength, comfort and ability to breath at his baseline will rapidly return.

Thank you for your prayers and we know that each step of the way God's loving arms have constantly kept Witt safe.

UPDATE

At 3 pm, Austan received word from the operating room that Witt has been anethesized and they have done all the pre-op procedures. The surgery should take between 30 minutes and a hour. We will update you as soon as we hear when things are finished.

WAITING ROOM HAPPENINGS!

They have just moved Witt up to the cardiac surgical floor...we will post when the procedure begins.

Thank you for your prayers!!! We are actually laughing in the waiting room...there is a true peace and joy here. (and, Chick-fil-A!) Grandmama and Grandbud are on their way down with Carson...when they get here we'll have 4 generations! You can bet that waiting room won't be too quiet!!!

I'm totally blown away by the number of people that Karen knows here at Texas Children's Hospital...from other families to many, many staff members...walking with her I feel like I'm with a celebrity! She is spreading God's love far and wide! (And, I'll protect her from the paparazzi!!!)

We'll keep in touch...bless you, friends!!!
~Cheryl

HEART FLUID DRAIN TODAY

At about 1:30 today the doctor's will perform a pericardial effusion tap to reduce the fluid around the heart. They have decided to do this procedure since the fluid build-up is restricing the full capacity of the heart chambers. The procedure takes about an hour and should help Witt's breathing functions and the heart. Witt has been on diuretics, however they help relieve internal heart pressure and the fluid pressure that is affecting Witt now is external to the heart chambers. Thank you for your prayers and love.

PRAYER WARRIORS NEEDED!!!

Mel and Austan are facing an excruciatingly difficult decision...the fluid around Witt's heart has increased and the cardiac team has indicated that he might require a tap. At this point, the surgery would be "elective" but they really don't want to wait until it's an emergency...and it doesn't help that we're heading into a holiday weekend. Witt is being moved to PICU so he can be more closely monitored but poor, little guy is still in pain and is starving. Karen and Mel have had very little rest this entire week...PLEASE STAND IN THE GAP FOR THESE WONDERFUL PEOPLE!!! I assure you that their faith is NOT shaken but, physically, they are worn out.

Several people have asked what they can do...PRAY! Hit your knees and pray, please!!! Pray for an instantaneous reduction in fluid, relief for Witt, strength and wisdom for Mel and Austan and peace for the rest of my family as we pull together in an attempt to support some of my favorite people in the world!!!

I will keep in touch throughout the day. Please know that your prayers mean more than words can ever express!
We continue to look to HIM!!!
Love, Cheryl

UPS, DOWNS AND BALLOONS!

Wow...today has been ups and downs. Witt is doing better but still has some pain. They are trying to manage it with Tylenol because the Morphine can slow everything down. With the surgery(which by the way Witt was actually cut open not just done orthoscopically) Witt was given fluids. The problem for Witt is that fluids that are not absorbed in the stomach but that are given by IV can really throw things of with his heart and lungs. Somehow these fluids add to his heart and lung issues. I don't really understand it but when he is given extra fluids by IV it can end up affecting his lungs. This then also affects his heart. Anyway...all the specialists are in agreement that Witt needs to be given more diuretic and by his IV. And, hopefully as the pain goes away he is able to take deeper breaths which also help to dry the lungs. The doctor's believe Witt will need to be in the hospital for several more days. Tomorrow they will try the feeds again. We need to also be able to turn his oxygen back down to his baseline of 3/4. I am glad I don't have to understand everything but can rest in the things I do understand...Witt is held securely in Christ's arms and surrounded by wonderful medical staff! The physician assistants and the attending doctor have been outstanding. They have totally been on top of everything. All the specialists have worked together and been in contact with Witt's regular specialists! And they actually seek out information and opinions from Melanie! They ask her how she thinks Witt is doing...they don't want to miss anything! I tell you, it's God at work...I have no doubt!!!!

Deela and Shailey brought a cool seahorse balloon to Witt and Melanie has been adding to them. I told her they would scare me but he seems to like them!

X-RAY RESULTS

The doctor got the x-ray results. Witt's lungs are a little wetter but not a significant change. Still trying to figure out exactly what is going on. His breathing is a little better. His pulmonary doctor (Ruiz) has been called and the doctor is also getting in touch with the surgery team as well as Witt's cardiologist. The pain in his abdomen could be the main cause of all of this but since Witt has both lung and heart issues they have to be careful. The doctor has asked his nurse to check on him frequently and make a thorough assessment...they don't want to miss any change in his condition. Melanie's "beware of Mom" reputation is spreading! She questions everything the doctors do which I completely support. Every time Witt is seen by a new doctor, they want to run all the same tests and x-rays. Melanie would rather them not "reinvent the wheel" and start all over each time there is a new doctor. One of the great things about being at Texas Children's is that all Witt's doctors(even the pediatrician) are a part of the system and can view all his records, test results, etc. When I think about Witt, Austan and Melanie, I think it's all the perfect match. God needed parents for Witt that wouldn't accept the status quo...parents that would be a real advocate. Witt is different, his condition is very rare. God continues to strengthen them so they are up for the task...which sometimes means questioning even some of the best doctors!

KNEELING AT THE THRONE OF GRACE

Witt is in quite a bit of pain! His breathing is labored right now. This is probably caused by a combination of pain and maybe wet lungs. He is not taking deep breaths...really short shallow breaths so his oxygen saturation is staying lower unless the oxygen is on 1 1/2 to 2 liters. It's not so much that he needs more oxygen but probably the fact that the higher setting "pushes" the air more; helping to fill the lungs. The pulmonary team has been called in and yet another xray has been taken(don't have those results yet). Witt is definitely not feeling good right now. What needs to be figured out is why he isn't taking deep breaths and why he is in so much pain.

Please, God, rain down Your wisdom! I am asking that the Holy Spirit fill this room so that the presence of Christ is undeniable! Right now I am in prayer...kneeling at the throne of grace with Witt in my arms just saying: "Here, God, he is Yours...he's always been! Touch him, heal him, glorify Yourself."

GIVE 'EM A BREAK! PLEASE!!!

Witt's not feeling well at all! Poor little guy is in a lot of pain so he's breathing really fast (taking quick, shallow breaths) and moaning. Mel just asked the nurse to get in touch with Dr. Ruiz, Witt's pulmonologist. His osat is staying down even with oxygen at 1 1/2. He will not have any feedings until this is taken care of. The xray in middle of night showed that the tube placement is fine but he has gas. Consequently, Mel and Karen got little or no rest at all last night. Please pray for immediate and complete relief for sweet, sweet baby Witt. And, also for peace and rest for Mel...I can't imagine the overwhelming fear and concern that must surely be consuming her right now.
~Cheryl

NO FEED YET

The morphine wore off and Witt was in pretty good pain again. We've had to go back up on the oxygen. A doctor from the surgical team came by. She ordered an xray just to make sure the stomach looked alright. He definitely does not like his stomach touched! Witt won't get any more feeds till in the morning. His glucose remains low(in the low 60's) so they increased again the IV and will check that level again at 2am. The nurse just gave him another dose of morphine. For anyone that is curious, babies can become addicted to morphine but it takes several straight days of a lot of doses. This is just his second dose today and only 3rd since he has been in the hospital. Most likely, Witt just needs more time to recover. The low glucose is probably because he is exerting a lot of energy because of the pain. The glucose is the only way he is getting calories and he is burning those up. Glad God never sleeps so on these nights of no sleep for us He is wide awake too!!!

Taken xray but no results yet!

A LITTLE BETTER!

The morphine is working. Witt is resting much better and the oxygen has been turned down to 1. The doctor wants to try the pedialyte feed at midnight. If Witt can't tolerate it (too much pain), they will stop feeds and continue with the IV until the morning. Witt may just need a little more time after surgery. Thank you, thank you for your late night prayers!!

WITT'S REALLY HURTING!

Please pray for Witt...he is really hurting right now. His oxygen saturation really dropped too but that can happen with pain. He is taking really fast short shallow breaths. The doctor had his feed stopped(still just pedialyte), turned up his oxygen to 1 1/2(baseline for Witt right now is 3/4) and ordered a little morphine. The morphine is already working and he is resting better. The doctor said if this didn't help him she would call in the pediatric surgeon. Please pray the pain will go away and that Witt can tolerate his feeds. Pray that he will take deep long breaths. Respiratory just tried to turn his oxygen down but couldn't yet still at one and a half. Also, having to give him more sugar water because his glucose level is a little low! I will update in a while!

THE TRUE GOD!

Praise the Lord! Praise the name of the Lord; Praise Him, O servants of the Lord, you who stand in the house of the Lord, in the courts of the house of our God! Praise the Lord, for the Lord is good; sing praises to His name, for it is lovely. For I know that the Lord is great and that our Lord is above all gods(Psalm 135: 1-3, 5).

The Lord, the True God is above all other "gods"...AMEN. He is in control...all other "gods" actually control nothing. No other god tells the ocean where to stop, the rain where to fall. No other God has counted the number of Witt's days and no other God gave Melanie total peace before and during surgery! Last night Melanie and I were talking. I asked her if it was hard to see Witt wheeled off to surgery. I remember how hard it was for me(okay, I fell apart!) when they took Evan away to fix his badly broken leg. Melanie said that it was amazing and she knew it was nothing short of our True God! She said that she was so at peace that she started to think that she should be a little upset. Melanie told Austan that she didn't know if it would help him but that she was not worried at all. It didn't make sense. I love it when what God does doesn't make sense...no doubt it is God!!! I praise the God Who ushers in His peace. What other God can do that without changing the circumstances...the God Who could change the circumstances but sometimes brings the change in you! I am still asking God to change some things in Witt...to perfect his lungs and heart! I am asking God to ease Witt's pain and to slow his respiratory rate down. But I am praising God for who He is...He is peace. In His presence is fullness of peace...Amen and Glory. Most importantly, I am asking that through Witt, Austan and Melanie the name of Christ is exalted and magnified! ~Karen

Witt woke up this morning and was of course the cutest thing!!

We think Witt is looking more and more like Austan! I wish his very blue eyes would show up in a picture!

FRIENDLY FAMILIAR FACES!

It's kind of like old home week here at Texas Children! We have gotten to know so many of the staff here. Melanie and I got to visit with one of Witt's first doctors in the NICU. Ran into him on a different floor. The nice nice lady (Maggie) who works on the cardiology clinic floor stopped by Witt's room to see him on her way home. I passed by one of the ladies that works the desk outside the NICU. She keeps up with Witt's blog and asked how he was doing. If Witt can't be home it's nice to be here where he is surrounded by so many nice people...people who know Witt and pray for him! It's amazing how God works through the staff to touch our lives. I of course have gotten the room all situated...unpacked, snacks and water put up. I only need my little 4 cup coffee maker...coffee here is instant...yuk! If things go as planned, Witt should only be in a few days. Right now he is in quite a bit of pain. It's not more pain than expected. He is getting sugar water, tylenol and morphine! By tomorrow, he should be doing better. Wow...that's about all I can say...Wow! Not only has God brought Witt through this but He has carried Mel and Austan...all of us! Witt's lungs were Rock solid...there is a joy and peace about Mel and Austan that can only be explained by God!

Witt's Hospital Bed

Thanks, Annalee, for Witt's card!

"Please, God, take the pain away." Look at his little furrowed brow!

BREATHING ON HIS OWN!!!!

The surgery is over and Witt is breathing on his own!!!! Melanie and Austan haven't seen him yet but the doctor said it shouldn't be too long! Not sure if Witt will be in PICU or just PCU. The anesthesiologist will weigh in on that. Thank You, Lord! I had just walked to the restroom when the doctor came. I was asking God for Witt to come off the ventilator...I heard God say that He was breathing His air into Witt. When I got back to the waiting room I got the great news! MIGHTY GOD...HE IS ABLE!!!

Psalm 40:3 He put a new song in my mouth, a song of praise to our God; many will see and fear and will trust in the Lord.

OUT OF HOLDING ROOM...INTO SURGERY!

Witt has been taken back for surgery now. Mel said he was wheeled off on a big boy bed. The surgery should last about an hour. I don't think they have actually started yet. The anesthesiologist wants to try to take him off the vent as soon as they are done. I am praying that the doctors feel God's presence...that they sense there is something different about Witt and recognize his God is the difference!

HOLDING ROOM!

They haven't started the procedure yet. Melanie and Austan are with him in the holding room! Isn't it great that wherever they are they are in God's holding room. I pray that Christ is holding them all real tight right now...that they actually feel His arms!

It was strip down time for Witt...he filled his diaper and carseat!

SURGERY TOMORROW...9AM!

Thank You, God! The fluid around Witt's heart is a little less so he is cleared for surgery tomorrow. We are trusting that this is God's timing! Witt will be at the hospital at 7am. Please pray for Witt's lungs...that he won't have to stay on the ventilator longer than just for the procedure. Witt is at a higher risk than most because of his heart and lungs. Several years ago I was with my good friend(Carol Scott) as her daughter (Lisa) went through some extensive surgery. What made her surgery more difficult were her lungs. Lisa basically had only one good lung. We clung to the scriptures about God being our Rock. We prayed that the doctors would see a difference in Lisa through surgery and that difference would be our Rock! The doctor came out after hours of surgery and said Lisa did great....that her lungs were rock solid! We laughed...Rock solid is right! I pray that for Witt...that his lungs are Rock solid. I pray that God makes a difference tomorrow and the doctors see it! I pray for all of us that God is a Rock of Habitation to which we continually come(Psalm 71:3). I pray that it is not only "on Christ the Solid Rock we stand" but it is on the Rock that we find peace and rest! I pray that once again we look outside our circumstances to be of use by God in the waiting room...that we can offer Him to someone who needs the Rock as their Refuge, their Strength, their Hope!! ~Karen

Witt has no trouble being at rest...even in the midst of doctor's visits!

BABYSITTING WITT

Today Jim and I watched Witt while Melanie and Austan ran errands for their house. Today was about the only day to accomplish several things if Witt does have surgery on Tuesday. I am not sure Witt enjoyed it as much as Jim and I did!

Jim and Witt

Me and Witt

Finally left alone!

Monday is a big day. We should know by tomorrow afternoon if surgery is Tuesday. I'll be honest...this is hard for me so I can't imagine what it must be like for Mel and Austan. I emailed Rise' that this was a real struggle...that it's times like this I have to narrow my focus way down to just the face God. I need to seek Him, seek His strength. Rise' emailed me back scripture...Isaiah 26:3-"You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You." She reminded me that its times like these that God Himself is the One who holds our face in His direction looking only at Him. Tonight as I go to bed I am asking that tomorrow God will hold our faces in His hands just as I had to at times years ago hold Melanie's face in my hands so she would look at me. Psalm 3:3-4 says "But You, O Lord, are a Shield about me, My Glory and The One Who Lifts My Head. I was crying to the Lord with my voice, and He answered me from His holy mountain. I lay down and slept; I awoke, for the Lord sustains me." The Lord truly sustains us, He holds us, He strengthens us...Glory!

I will post as soon as we find out something about the surgery...if it will take place Tuesday and when. Tonight I am also asking God to bless each of you who continue to lift Witt and all of us in prayer. I pray that each of you also find true rest in Him...God bless~Karen

HE'S A BIG DEAL!

Witt is doing well today. Next week is a big week...our God is always Bigger! Please pray:

That Witt will have the surgery in God's perfect timing...hopefully Tuesday

He will stay healthy...he is starting to get some congestion

His heart...that the fluid will be less around it. His echo is Monday

His lungs...they will continue to heal, continue to grow and develop. Chest xray Monday

Pray for Melanie and Austan as surgery approaches...this must be hard!

Thank you for the prayers. I know that when people ask what they can do and I say to pray it can seem like so little. It is everything! The thought of so many people at the throne of grace on Witt's behalf just brings me to tears. Thank you...thank you...he's a really big deal to me!

THANK GOD FOR THERAPISTS!

Wednesdays are therapy days for Witt. His therapists (Stephanie PT and Kelli OT) are amazing. They are patient and positive! Since today was a quiet day at home for Witt (yeah!) I thought I would post some video of both therapy sessions. As far as we know, Witt's surgery for the gtube is still scheduled for Tuesday!

COUSINS MEET!

Today Witt had OT and PT. That all went great...tomorrow I will post video from it! After he was through we paid his cousin, Elle, a visit. Elle's dad, Lee, and Austan are brothers. Hopefully Elle is going home tomorrow but Lee and Lisha are trusting in God's perfect timing also for that. Click on Elle's picture down to the left to go to her website! We too are wanting God's perfect timing for Witt's surgery. As of now it is set for next Tuesday. Melanie will find out later the exact time of day. Also, it is depends upon the outcome of Witt's echo cardiogram on Monday. The pulmonologist will also look at the chest xray taken next Monday. If it all goes as they have planned, Witt will have the surgery on Tuesday but remain in the hospital for several days. This will be a first...a planned hospital visit! We are planning but asking God to direct every step!!

Witt and Elle Meet!

BOTTOMS UP!

Today is a restful day for Witt, no doctor's appointments! Melanie and Austan are however very busy with their house. They are meeting with the contractor and choosing cabinets, faucets, lighting fixtures, etc. The cardiologist called Mel yesterday just to let her know he has not been able to talk to the surgeon yet. Hopefully they can talk today and figure out the details. We are asking for God's perfect timing with the surgery! Tomorrow it's back to pulmonary at 9am then to OT and PT. Please pray that Witt's stomach settles down. For now, Melanie is pausing his feeds if he seems to start gagging and slowing the feeds down if needed. That's helping some. Witt's surgery is still scheduled for this coming Monday but I will post as soon as we know for sure!

TODAY'S RESULTS!

Today started off with a "bang". Witt threw up everywhere in the waiting room before the echo cardiogram! It's really hard to determine what is actually causing him to throw up at this point. It is probably a combination of Motrin, feeding tube down his throat and a good gag reflex now! The doctors did cut back the Motrin dose slightly to 2ml 3 times a day. The good news is that his lungs look better which is amazing because he has thrown up several times over the last few days! Thank You, Lord! The fluid around Witt's heart is the same. If it stays at this level, he is cleared for surgery but the cardiologists want another echo next Monday before surgery. This means that the surgery will most likely have to be postponed for a day or 2 because it would be almost impossible to have another cardio evaluation and make the surgery scheduled for noon. The cardiologist will work all that out with the surgeon and call Melanie by tomorrow morning. The doctors believe the valve is the same but honestly the echo was short and really only evaluated the fluid around the heart.

Hanging outside on Mother's Day!

ECHO CARDIOGRAM AT 11AM

We are walking out the door to go to the cardiologist. Witt's echo is at 11am and sometime after that will be another chest xray and a visit with the cardiologist! Witt has thrown up a couple of more times. It's obvious he isn't sick but something is upsetting his stomach. We think its the huge amounts of Motrin he is taking. Please pray through all this his lungs are actually better and that the Motrin has helped pull the fluid from around his heart! God is Mighty...He is Mighty to Save. We rest in that knowledge!!!

HAPPY MOTHER'S DAY, MELANIE!

Hallelujah...Glory to God! What a special day this Mother's Day is! I thought Mother's Day was great with my own kids but to be able to celebrate it with my daughter and her child and with my daughter-in-law and her child...AMAZING! Melanie's first Mother's Day...by the grace of God. There is no doubt that Witt's life will always be abundant. In fact, right now its 2am and Melanie is up with Witt. His stomach is pretty upset. He actually threw up a couple of hours ago which for Witt can be very harmful. His last pneumonia was a direct result of aspirating on his throw up. Melanie talked the the pulmonary doctor on call. She said there isn't much she could do. Just keep an eye on his oxygen saturation. If it drops, Witt would be given the antibiotic to fight pneumonia. Please pray that his lungs are actually healing. His surgery for the gtube is scheduled for a week from Monday but not if his lungs aren't better. Anyway, as I stated in a post a couple of days ago, what is truly amazing and simply the hand of God is that this house is still full of laughter and joy...the joy of motherhood. Doctor's appointments, talking to doctors, even ER visits and hospital stays are somewhat the norm but so is life filled with joy...abundant life! Thank You, God, for this Mother's Day. Thank You for Melanie. Thank You for Witt.

HAPPY MOTHER'S DAY, MELANIE. YOU ARE ONE OF THE MOST COURAGEOUS MOMS I KNOW!

PICTURES FROM THIS WEEK

Yesterday was a calm day! Witt continues to gain weight. At this point, Witt's surgery is still set for Monday the 18th. Not only does he have a recheck this Monday with the cardiologist but also he also goes back to the pulmonologist on Wednesday. The surgeon at this point is not planning on doing the "stomach twist"...just inserting the gtube. I thought I would post some video and pictures from the week.

Witt's hair is getting more auburn!

Witt and the warnings...love all the warnings these days!

Around here we all pitch in even the cat, Big Chicken aka Chicken Salad Sandwich (that's her name...in honor of Royer's Cafe at Zapp Hall!)

Some play time

All worn out

Bye now...ya'll have a blessed weekend!

I NEED THE LUPHERS!!!

Melanie and Austan met with the surgeon today. Witt's surgery for the feeding tube has been scheduled for May 18th around noon. This will of course have to be approved by pulmonary and cardiology. Witt has another appointment Monday the 11th with cardiology. He will have another echo and chest xray. I assume the cardiologist will decide then if Witt can go ahead with surgery the next week. I ask for and trust God's perfect timing!
A few days ago a good friend of mine emailed this video website to me(http://www.youtube.com/watch?v=xbSe8Fl6wEY). It's an amazing video that Rise' said sums up all her feelings about Africa and why it has captured her heart. As I watched it, I could only think of Witt, Austan and Melanie... the Luphers and their story! The video says: "I am needed here....They have so little and I have so much. Often there is a level of suffering here that is unimaginable. But its hard to reconcile the many challenges Africans face with the joy I see in the people. The images spilling out of my television show only misery, and I was fooled. I bought into the lie that circumstance defines happiness. In places where despair should thrive I find adults dancing and singing. Children playing soccer with a ball of tied trash. Relationships and faith provide my new reality...my joy should have no regard for my circumstances. I want what I have learned to trickle down from my head to my heart. I no longer want to need the next thing to have joy. Africa does need our efforts and partnership but for me I need Africa more than Africa needs me. Because it is Africa that taught me that possessions in my hands will never be as valuable as peace in my heart." That's the Luhpers...Witt, Austan, and Mel to me! I think I am needed. There is suffering here at times that most of us can't even imagine. BUT it is hard to reconcile the many challenges that Austan, Mel and Witt face with the joy I see in them...with the laughter I share with them, with the sweetness I see in their family. In places where despair should thrive (it does exist at times but it never thrives!) I see them "dancing and singing." I see Witt playing with hands that at one time we didn't know if they would open up. My relationship to God and my faith provide my new reality...my joy should have no regard for my circumstances. I want what I have learned from the Luphers to trickle down from my head to my heart. I no longer want to need the next thing to have joy! Witt, Melanie and Austan do need my efforts but for me I need them and what they can teach me more than they need me!! Because its Witt's life and what I see in Austan and Melanie that taught me that possessions in my hands will never be as valuable as peace in my heart. Thank you, from the depths of my heart...thank you, Witt...thank you, Austan...thank you Mel...I have learned invaluable Kingdom lessons from each of you! I love you~Karen


I need what God can teach me through this precious life!

BATHTIME!

Today Witt went to physical therapy and occupational therapy. Of course, he had to get a bath last night to smell pretty for the 2 cute therapists!




Bathing can also be tiring!

Physical therapy didn't go great just because Witt was really asleep when we got there and I think he's getting a little tired this week of the hospital trips. 3 down..1 more to go! He did really well with the OT, though. She worked with him in a highchair just giving him small tastes of fruit to get used to a spoon. Tomorrow, Melanie and Austan meet with the surgeon about getting the gtube (feeding tube) in. That's all the planned doctors visits for the week! Next Monday it's back to the cardiologist to see how the fluid around the heart is and another lung xray. When we finally got Witt home he was ready to nap. Melanie put him in the big boy bed for this nap!

I know I don't say it each post but thank you for all your continued prayers for Witt. It's overwhelming and humbling to know how many of you pray for Witt, Melanie and Austan. I am blessed to see God's faithfulness in His answers to those prayers!~Karen

WITT ATE!!!

Witt did great in the swallow test...glory! He was able to eat cereal without any aspirating. He actually did pretty good on the handful of swallows from a bottle but there is no need to even push this. The speech therapist is recommending that the OT move on to working with Witt to be able to drink from a cup. He will just skip the bottle. Witt probably won't start the cereal till after he gets the gtube. Although he did great, the speech therapist said not to risk adding anything new until after the surgery. This is the same wonderful speech therapist that was a part of the first swallow test. We also ran into one of Witt's first doctors when he was born. Dr. Bakta thought he looked huge! Melanie said that we think he looks huge too because we know how much he has actually grown! Here are some pictures from today. More proof of his "hugeness" and how cute he is!

CARDIOLOGY RESULTS

Today was sort of a mixed bag of reviews! Some good news, some okay news, and maybe some not so good news. There is no real change in Witt's heart valve...that's good, however, to avoid surgery it actually needs to get better. What caught the attention of the cardiac doctor was that the chest xray was "ugly"...in his words. It could just be that it's not a good xray or it could be that some things have changed like a little more fluid around the heart and maybe part of his lung is collapsed. BUT it could also be that it's just not a true picture because Witt was crying at the time. The doctor put Witt on Motrin 3 times a day and upped his diuretic, both to help with the fluid around the heart. Witt will go back in 7 days to be checked again. If these are indeed issues it could definitely influence any procedures in the near future. Tomorrow at 9am is the swallow test. This will mainly show us if Witt can eat some solid foods like baby cereal without aspirating.
Sometimes I don't even know what to ask for, sometimes trying to figure that out is overwhelming. That's when I just rest...rest in the knowledge that God does know. He knows what's best for Witt and He is the One able to accomplish it. Right now Melanie is laying down. She didn't get much sleep last night and had a full day of doctors. On the way home she felt a little nauseated. I know she needs rest. She needs the kind of rest that only God offers...the kind that not only rests the body but also the soul. Tomorrow we walk on! We walk with our eyes firmly fixed on Christ...our hope firmly placed in Christ. Thank God(and I mean thank God!) that He never gives us a mixed bag of reviews. I know right where I stand with Him or in some cases where I fall, but I always know where God is! I always know that He is our Strength and He is where we find rest!

Witt Plays!!

Witt Rests!

WAITING AND TALKING!

We are waiting for Witt's echo cardiogram. I feel like the persistent widow...I continue to ask God to heal Witt's heart and just flood us with His peace. How faithful He is! Texas Children's has a ton of things in place to handle the flu scare. ER people are waiting everywhere and you are asked many times if you are here for a scheduled appointment or sick. Witt has an appointment with the cardiologist at 12:00 who will give us the results. I will post again when we get home! Until then here is some video of Witt practicing his talking. He better get a jump on it to get a word in with this family!~Karen

GRANDMOM IS HOME AGAIN!

I am well enough to be home again! I swear Witt has grown leaps and bounds over the past 10 days. I truly marvel at God and His ways. First, to have Deela living so close by and put up with not just me but a really sick me as a roommate. Second, undoubtedly God was preparing me for the day when Austan, Melanie and Witt get to move into their home! The days away were hard but God doesn't waste a thing...even a virus! The repairs on Austan and Melanie's house are moving right along. I think it should be finished early June. It's going to be exciting for them!

Witt's pulmonary appointment went well on Friday...sort of uneventful which is great these days! Dr. Ruiz will look at the chest xray that Witt is having tomorrow with his cardiology appointment at 9:40. Once again tomorrow the cardiologists will talk about the bad heart valve and doing the cardiac cath test. First, Witt will have the gtube (more permanent feeding tube) put in...probably sometime this month. Dr. Ruiz will check Witt's lungs out before he gives the okay to the surgeon. Mel and Austan meet with that surgeon this coming Thursday! It's a full week with doctors. Please pray not only for Witt's heart valve and God's perfect timing on the procedures he needs but also protection from getting sick...especially the swine flu. As you can imagine Texas Children is crawling with sick kids and scared parents. We really need Witt to stay healthy and continue to grow in size and strength! Now that I am back at home, here are a couple of videos of the big (and I mean chunky!) Witt!~Karen

If anyone doubted Witt's "chunkiness" or that he is the coolest kid...here's proof!