Saturday, January 30, 2010


Not much has changed since yesterday which in someways is very good! No word from Dr. Morales yet and I don't think Melanie and Austan really expect to hear anything till Monday. Although Witt remains on the ventilator, he still manages to play around the tube!
While we wait I rejoice in all that God has done and continues to do in Witt's life. I don't know what Dr. Morales will have to say but I am asking God to direct his every thought especially concerning Witt!

Friday, January 29, 2010


Thank You, thank You, Lord!!!! The procedure is over and the news is good!!!! The cardiologist told Melanie and Austan that from measuring all the pressures it appears the lungs themselves are good and that appears to be the leaky mitral valve that currently is causing the issues. The doctor said in fact the pressure in one chamber that had been too high is lower. This could have lessened when the sac around the heart was removed. Witt has not had a cardiac cath since then. What we still don't know is whether or not Dr. Morales would recommend replacing the valve because there are other factors to consider. BUT, it certainly leaves the option on the table. In all honestly, this is the best result we could have hoped for outside of God just reaching down and healing Witt...and that is still on the table too!!!!!!


Witt is RIGHT NOW having the cardiac cath done. They stopped his feeds after the 6pm feed yesterday just in case he could be taken earlier. Dr. Chrystal is doing this procedure. We are always amazed when a new doctor sees Witt. It feels like Witt has already seen them all! Mel and Austan will meet with this doctor right after he is finished.

Thursday, January 28, 2010


Witt has had a restful day. He remains on the ventilator but manages to play with his toys and be very cute! The cardiac cath is scheduled for tomorrow at 2pm. However, they are hoping he might even go sooner. Having said that, it could actually be later! We have been here enough to know that schedules are more like guidelines that can be changed. Certainly there can be emergencies and unforeseen circumstances that can cause this to change. I believe that when the doctor is finished with the heart cath that he will meet with Melanie and Austan and give them some idea of what he measured and what it meant. The doctor performing this is not Dr. Morales who will use the results to help him to decide if mitral valve replacement will be of any benefit. Dr. Morales will meet once again with Melanie and Austan to discuss what decisions they have. I am not sure when this meeting will take place. Vickie(Austan's mom) and I were talking about what we should pray for. Honestly, I don't know what to very specifically pray for except God's will to happen in such a glorious way that there is no doubt that it is God and He is in control! I must confess that a couple of days ago as I was walking back from Witt's room to the waiting room I was yelling at God...not out loud yelling but nevertheless yelling as loud as I could in my spirit. I was telling God to just be heal Witt. God very lovingly told me that I wasn't asking Him to be God, He can be nothing less, but that what I was demanding was that His will would be my will. So I laid it all down and once again left Witt in His capable hands. It is God's will that I desire above all. His will is what's best for Witt.

Wednesday, January 27, 2010


Austan and Melanie met with Dr. Morales. Nothing will be decided or needs to be decided until Witt has the cardiac cath procedure. They did discuss possible scenarios but any of these will depend upon what the cardiac cath tells them. Dr. Morales wants to make sure among other things that the lungs themselves are not contributing to Witt's issues. I think the best case scenario would be that the lungs are good and that Witt's condition would be helped by replacing the mitral valve. The test is not scheduled yet. I know they will try to schedule it as soon as possible. Thank you for your unwavering support and prayers. Please continue to pray that God not only pours out His wisdom but that He actually directs every opinion and decision!


Melanie and Austan are waiting to meet with Dr. Morales this afternoon. It is supposed to be today but we know that these kinds of things can get changed. The main discussion will be whether or not replacing the mitral valve is an option. A lot of decisions will come out of this discussion and what Dr. Morales, Dr. Macicek and the other cardiologists recommend as the best plan for Witt. For now, Witt remains back on the ventilator. Yesterday he was also given some blood because his hemoglobin was low. He looks really good and seems to feel better. He definitely still loves playing with his toys. We have no idea what Dr. Morales will say or what decisions will need to be made. What I do know is that God is good. God's goodness is not at all dependent upon His actions or His will. He is not good because of what He does. That's why right now I can proclaim His goodness without knowing what His very specific will is for Witt or what He plans to do. You see, God's goodness is based only on Who He is. It is His actions and His will that are dependent upon Who He is. Please join me today in singing and testifying how Great is our God...I sing it today because of Who God is...because He is Love, He is Mercy, He is Compassion, He is Strength, He is The Hiding Place, He is Great!!!! Sing it with me because He is Witt's God!!!!!

The splendor of a King, clothed in majesty
Let all the earth rejoice
All the earth rejoice

He wraps himself in Light, and darkness tries to hide
And trembles at His voice
Trembles at His voice

How great is our God, sing with me
How great is our God, and all will see
How great, how great is our God

Age to age He stands
And time is in His hands
Beginning and the end
Beginning and the end

The Godhead Three in One
Father Spirit Son
The Lion and the Lamb
The Lion and the Lamb

Name above all names
Worthy of our praise
My heart will sing
How great is our God

How great is our God, sing with me
How great is our God, and all will see
How great, how great is our God !!!!!!!!!!

Tuesday, January 26, 2010


Late last night about 11pm the decision was made to take Witt off the ventilator. He did well through the night but early this morning he took a turn for the worse. Around 6am Witt started fussing. His osat dropped and stayed down. His breathing became increasingly more labored. The doctors were called and the decision was made to give him more diuretic and watch him. Witt still remains off the ventilator but it is still touch and go. The doctor wants to give him every chance to remain off the vent but also knows that Witt could require it at any second. Most of us will never know what it's like to have a crash cart sitting at the end of our baby's bed in case it is needed. Melanie and Austan have lived through many of these kinds of situations. Right now they are both very tired and yet tomorrow afternoon they will meet with Dr. Morales and hear his opinion about replacing the mitral valve. One cardiologist said today that some of them don't think surgery is a good idea...that it might not help...Witt might not even survive...or if he does he might never be able to come off the ventilator. Please continue to pray for God's will. Continue to pray for Mel and Austan as they make decisions. Please pray that right now God is holding all three of them in a very real and practical way that is felt!

Monday, January 25, 2010


Witt's lungs are a little better today. Hopefully, before the end of the day they will do a pressure support trial and see how he does. If that goes well they will try to extubate him. We were told that Dr. Morales actually will not be back in the hospital till Thursday. It appears that it will be a few days before Melanie and Austan will discuss the possibility of surgery with him. I continue to ask God to reveal Himself to everyone involved in Witt's care. Maria, the receptionist in the PICU waiting room, just called me over to her desk. A young Hispanic woman was there. Maria wanted me to hear the young woman's story and had to interpret for me. The one "word" that was said many times and didn't need interpreting was "Dios." Two years ago her one year old son was in the PICU. She was saying her final goodbyes after the doctors told her that her son had passed away. She continued to call upon Christ and miraculously her baby came back to life! The doctors were stunned. She was telling them that he was alive and finally they examined him and said truly he was alive. He is now three years old. Is anyone surprised that his name is Jesus! I don't know what God's plan is for Witt but I know that God is Able! And I know that the same God who was glorified in Jesus' healing will be glorified by whatever He chooses to do in Witt's life!

Sunday, January 24, 2010


Not much has happened today. Witt has had to remain on the ventilator. For some reason his lungs looked a lot wetter yesterday and remained about the same today. He is being given chloride and more diuretic. Witt's chloride is low and the way I understand it, his body won't let the diuretic work with low chloride. The cardiologists will talk to Dr. Morales and get his opinion on open heart surgery to replace the mitral valve. I am not sure when that will happen but I believe it will be the first of this week. I am asking God to continue to build our faith in the midst of all of this...I am asking God to heal Witt...above all I am asking God for the name of Christ to exalted!!!!

Saturday, January 23, 2010


Today's post is hard to write. These last 2 days have been filled with such pain...I can't imagine what it must be like for Melanie and Austan. We will never give up hope because our hope rests solely in Christ, our Lord and Savior and Witt's Creator. We are nearing the end of what the medical profession can do and yet I know that God has no limitations. I will continue to ask God to heal Witt but make no mistake that my faith and hope are in who God is and He is Trustworthy. Yesterday, both genetics and neurology talked with Melanie and Austan. Genetics has no real case studies because trisomy 1 is so rare and even the few cases they have are very different. I won't go into detail about Witt's brain but there are several abnormalities. The neurologist doesn't expect Witt to ever walk or talk and honestly, because of the brain abnormalities expects Witt's life span to be very very short. He would not be a good candidate for a heart transplant. Dr. Morales is out of town but he will be consulted early next week about doing any kind of surgery to the heart. We don't know if this is possible or what is best for Witt. What I do know is that God is Mighty...Mighty to Save. I know that God is Trustworthy and He can do nothing less than what is absolutely the best for Witt...His best for Witt! I know that a true success story is a life that brings God glory and has nothing to do with the number of days you are on this earth. I know that Witt's life is the greatest success story I have ever seen!!
For now Witt remains on the ventilator. He wasn't able to be taken off of it yesterday because his carbon dioxide level increased too much during the pressure trial. Please pray that he can be taken off the vent today. Please pray that Witt's lungs will dry up...they are wetter this morning. Please pray that Melanie and Austan are being "hidden in the secret places of God." And please pray above all else that our lives are success stories, that our lives do nothing today but glorify our Christ!

Friday, January 22, 2010


The radiologist report is in from Witt's MRI and its not good. Dr. Macicek came by late last night and told Melanie the list of several abnormalities in Witt's brain. However, even Dr. Macicek could not tell us what it all meant. The neurologist should come by sometime today with much more information. Honestly, it doesn't sound good. We don't know for sure the effect this will have on the transplant possibility but it seems like this would prevent him from being a candidate. If there is anything God has taught me from Witt's life it is "but God"!!!!! I don't know what "but God" completely means in this case at all but what it always means is that God has the final say. Oh, there is such peace in the midst of agonizing pain because I know "but God". I know that Witt's life will be everything that God has deemed it to be...I know that Witt's life will be the exact number of breaths that God has counted even before Witt was born. When I came into Witt's room this morning "A Simple Prayer" was playing. One of the lines says: "When men look at me I want them to see the Light of the World in me." When I look at Witt I see God...I see God's infinite love...I see the Light of the World!

Thursday, January 21, 2010


The MRI is finished. Witt did end up being put on the ventilator and remains on it now. I don't know how long he will need to stay on it. The radiologists report should be available sometime today and the neurologists report should be ready sometime tomorrow. Melanie, Austan and Witt have now started on the very hard path. Each test result most likely will influence the next choice that needs to be made. Please, please pray for wisdom and discernment and that Melanie and Austan's will is so wrapped up in God's will that they feel the same!!!!



Most couples never get an MRI of their child for their anniversary but that is the path that God has Melanie and Austan on. It is a path that they as individuals and a couple have walked with trust and faithfulness. Only four years of marriage and yet God has been infinitely glorified!
Mel and Austan had "Adonai" sung at their wedding. Here are some of the words from that song:
One timid faithful knock
Resounds upon the Rock of Ages
One trembling heart and soul
becomes a servant bold and courageous
You call across the mountains and seas
I answer from the deepest part of me
Adonai, I lift up my heart and I cry
My Adonai
You are the Maker of each moment
Father of my hope and freedom
Oh, my Adonai
Oh, From age to age you reign in Majesty
And today You're making miracles in me
Adonai, I lift up my heart and I cry
My Adonai, You are Maker of each moment
Oh, Father of my hope and freedom
Oh, my Adonai
Melanie and Austan, your faithful walk in your marriage is a true and living witness to all of us to what God can do if He is our Adonai...our Lord and Master. Today, I thank God that He gave you to each other and Witt to both of you!!!

Wednesday, January 20, 2010


The MRI didn't take place today. There was no cardiac anesthesiologist available. It is now scheduled for 3:30 tomorrow. I believe they will get preliminary results from the radiologist tomorrow night and the report from the neurologist the next day. Also, Melanie and Austan will soon meet with cardiology team including Dr. Morales to discuss what to do. Please continue to pray that God's wisdom is being poured into Melanie and Austan to prepare them for these decisions!!


Here is what Melanie wrote on her facebook:

Witt is to the point of needing another heart surgery or a transplant but the cardiologist don't think he will qualify for a transplant and we have no way of knowing if the surgery will help. Please pray, Austan and I have a lot of hard choices to make soon.


Please forgive me if this post leaves you with more questions but we don't have all the answers either. Witt is not doing very well. He is requiring more oxygen and is breathing hard. Cpap is standing by if his breathing doesn't get better as his fever comes down. The cardiologists(including Dr. Macicek) met this morning. It was decided that they would not try the cardiac cath procedure because it is invasive. Right now the benefits do not out way the risks. They do however want the MRI done today. They need to talk to Dr. Morales(surgeon who did Witt's first open heart surgery) and see if he thinks the mitral valve could or should be repaired or replaced. It feels like the cardiologists think that Witt wouldn't qualify for a transplant so this would be the only option left. The problem is that all of Witt's heart has issues and the mitral valve replacement wouldn't fix that. Please pray for Witt!!! Please pray for Austan and Mel. I don't even know what specifically to pray....I am moaning! Please, Lord...Your will...Your glory!

Tuesday, January 19, 2010


Witt continues to run a fever. The doctors have not told us if the cardiace cath procedure will still take place Thursday since he still has a fever. It is still scheduled. Honestly, there is not a lot of information to pass a long so maybe I will just let Witt do the talking!!!! The cool damp cloth is to help with the fever.

Monday, January 18, 2010


Witt is still running a low grade fever off and fact he "spiked" a fever twice which I think just means it was over 101. He will be kept in PICU until they are through running tests to determine what is causing it. He is being tested for the second time for RSV because that's just standard practice. The fever could cause the cardiac cath and MRI to be postponed. So far the cath is still scheduled for Thursday. When the results are in from the procedures, the cardiologists will pour over the results. Sometime after that Melanie and Austan will be called to make hard decisions. Join me in asking God to reveal His will to them in such a way that their will is His will. For now I am asking God to continue to touch Witt...touch him in such a way that there is no doubt that it was Christ!!!!

Witt doesn't seem to feel that great at times but this
afternoon he was his chipper self!

Sunday, January 17, 2010


Looks like Witt was seen by one more doctor...
Witt had an up and down day yesterday. Fortunately it ended on an "up"! Since Witt was not responding well to the Nesiritide and his lungs looked pretty wet he was given a laisx IV drip to pull the fluid off. He did respond very well to that and now is back on dosage lasix. His oxygen is now at 3/4 a liter and he is satting well! Witt continues to have a low grade fever...not really sure what is causing that. His white blood count is normal which indicates no bacterial infection. If Witt continues on this upward path he will be moved back to the cardiac floor(15) and stay there until the cardiac cath procedure which for now is scheduled for Thursday. They are still trying to schedule the MRI of the brain for the same day. The results from these tests are going to bring about some very hard decisions that most parents don't even know exist. I am asking God to pour out His mercy and grace on Melanie and Austan! I am asking God reveal Himself and His will to Melanie and Austan so that through their decisions He is glorified. I am asking Him to reveal His perfect plan for Witt!!

Friday, January 15, 2010


Today was a busy day for Witt. The doctors didn't feel like the new medicine is working that great. Tomorrow they plan on giving him his diuretics by IV. Because of this and probably other reasons it was decided that Witt needed a picc line. Unfortunately, the patient is usually put on a ventilator and sedated for this procedure. Melanie and Austan talked to the cardiac anesthesiologist. It was decided to put the picc line in his leg just above the knee and try to do it with just local numbing. The hope was that he would stay still enough without being intubated and sedated. The picc line was successfully put in this way! If sometime a little before 2:00pm anyone heard some "hallelujahs", that was us!!! For the most part, Witt is on 1 liter of oxygen. His lungs are not drying out as quickly as they would like and he is still working a little bit at breathing. The cardiac catheter test and MRI on the brain haven't been scheduled yet but probably will not be Monday since it is a holiday for the hospital. Right now I am hanging tightly to this scripture that Rise' reminded me of:

"Peace I leave with you; My peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."~John 14:27

It is the presence of His peace that keeps my heart from being troubled and keeps fear from gripping hold of me. It is His peace...not the absence of terribly horrible circumstances but the presence of His peace! Thank You...thank You to the Prince of Peace!

This was Witt yesterday before the move down to the PICU...
He giggled whenever I moved his crib!

Thursday, January 14, 2010


Witt has been moved to the PICU. He might be put on cpap to help expand his lungs. It was decided to give him a medication called Nesiritide. This medicine helps the body to diurese but it is not actually a diuretic. They are hoping that this will help to start pulling the fluid off. Dr. Macicek also believes it is time to do the cardiac cath test. Witt will be intubated for this so they are also scheduling the brain MRI for as close to the same time as possible. Not only do the cardiologists need the information that the cardiac cath will give them but both of the procedures are a necessary step in seeing if Witt would qualify for a heart transplant. Melanie and Austan want to at least take these steps. A lot of blood will also be drawn while he is on the vent which will also be needed for tests in the transplant process. More than ever I am asking God to make his glorious will be known to Melanie and Austan...these decisions have to be too much for them alone!

Witt is now on the Nesiritide to help him to diurese(a much nicer way of saying "pee"!!). They took his blood pressure every 15 minutes for the first little bit until it quit dropping and leveled off. So far no cpap...he actually is resting well!


Dr. Macicek just came by. You will have to forgive me if I misspeak on something but I am going to try to put in writing what he said! He is concerned that Witt's lungs are a little worse today because of the fact that his liver position is lower. The chest x-ray is not up yet. He also thinks that Witt is in general breathing a little faster and it is still a little labored. Dr. Macicek has asked for a cardiac specialist with the heart failure team to come by and give her opinion about a certain medicine. The medicine would help Witt's heart to squeeze better which in turn ends up helping the lungs to dialate better. What's going on now is not because his heart got worse but Witt lives with no reserve in his lungs like most of us because of his heart. If the cardiologists thinks this medicine will help, Witt will be moved to the PICU because his blood pressure among other things has to be monitored very closely. Dr. Macicek said that hopefully this is a virus that hasn't quite run its course yet but in the meantime he would like to do anything possible to keep Witt off the ventilator. He knows that last time Witt went down hill quickly. Also, Witt's chloride is low so he is having to hold one of the 4 diuretics today. Please pray for Witt's lungs to dry up and also for Dr. Macicek. I can't imagine what it would be like to be Witt's main doctor. Dr. Macicek should have actually been removed from Witt's case when Witt switched to the heart failure team but he asked to be kept on! Lord, reveal Yourself to Dr. Macicek today...grant him wisdom and endurance!

Wednesday, January 13, 2010


Witt is doing a little bit better. I am a whole lot better so I am now in his hospital room! His oxygen is at 1 liter...turned down from 1 1/2. The day before Melanie and Austan brought him in he was only requiring 1/8 to 1/4 liter. When he started to go downhill he went pretty fast but he is now definitely going back in the right direction! Please continue to pray for Witt that his lungs would dry up. Please also pray for Melanie and Austan that God would continue to give them His wisdom with which to make decisions. Please pray also that they are continually filled with hope and encouragement that is never based on circumstances but based solely on Who our God is!!!! I am thankful that He is Sovereign!!!
Witt was asleep when I got to his room!

Tuesday, January 12, 2010


Witt had the echo and it shows that his heart is same which is really good news....Glory!! I believe the assumption is that it is a virus or something. The last I talked to Mel, the flu and RSV quick test came back negative so Dr. Macicek didn't put Witt on an antibiotic. I haven't been able to go to the hospital because I have been down with a head cold. I feel much better today!! In the meantime Melanie sent this video...sure lifts this grandmom's spirits(that and a "driveway" hug from Adelaide)!!!


Witt did okay through the night. Melanie said he isn't breathing that fast but its labored. He just got 3 diuretics to help dry out his lungs. Once again with Witt, the doctors have to make sure that its not his heart causing all this. Sometime today he will have another echo on his heart. Please join me at the Throne of the feet of the One who created the only One who is really in control of Witt's and all our lives. I am praying that Witt's heart actually looks better than ever! I am also asking God to take away the congestion and dry up Witt's lungs. O, He is Able...He is Mighty To Save!!!!

Monday, January 11, 2010


Mel and Austan headed for the cardiology appointment but decided to take Witt straight to ER instead. His breathing was a little labored. Mel just called and said that Witt will be admitted. He is holding some fluid. She described his breathing as "tugging a little bit". They are waiting for cardiologists to make a plan. I am not exactly sure what floor Witt will be admitted to...15th or PICU. All last week Mel was worried that the congestion might get worse. She asked that maybe Witt could be okay through Saturday because that's when our entire family was celebrating Christmas together. Thank, Lord, for that blessing!!!!


Witt has an appointment this afternoon at 3:30 with Dr. Macicek. As usual God's timing is perfect. Melanie has nursed Witt along ever since he got out of the hospital. He is very very congested and its very thick. A couple of times he has choked and had a hard time catching his breath. He's consistently on oxygen and Mel turns it up and down as needed. Most the time Witt acts like he feels pretty good. Today, Melanie and Austan really welcome the trip to Texas Children's. She's thinks there is a chance that Witt will be admitted till he gets over this congestion. At any rate, it will be comforting to have his cardiologist's opinion of what's going on and should be done! I started to write how I marvel at Melanie and Austan but the words just didn't seem right because I know that it is all God so I continued reading in my Bible. God certainly knows how to put things!!!!

Psalm 71:7~ "I have become a marvel to many, for You are my Strong Refuge."

This is why I marvel at Melanie and Austan. Not because of anything they have done but because of what He has done. He has made Himself their Strong Refuge. He is their Hope in a walk that has to at times seem hopeless, He is their joy when a day is only filled with tears, He is the very air they breathe when it seems like hurt won't allow the next breath. And somehow through it all He just brings laughter and it's usually through Witt!

Thursday, January 7, 2010


Witt's head/nasal congestion is getting a little better. So far it doesn't appear to be bothering his lungs. He is still on a small amount of oxygen and his osat is coming up! He seems to completely tolerate his new feed of Peptamen Jr...vanilla flavored. The flavoring of course doesn't matter one bit to Witt but it sure smells much better to us! Melanie is still using saline drops and having to do a little suctioning. She has talked a couple of times to Dr. Knudson(on call fellow cardiologist). It really great when its a doctor that has taken care of Witt. It certainly gives Melanie more peace of mind to know that he is on call tonight!

Tuesday, January 5, 2010


Witt is home! He is on a little bit of oxygen because his head is pretty congested. Please pray that this congestion will go away and nothing will settle in his lungs. Up until last night the congestion was not affecting him to the point of needing oxygen. Right now Melanie has her stethoscope out trying to decide how his lungs sound...I can't imagine!!!

Witt was definitely a happy camper today at the hospital!


The cardiologist at rounds today said that Witt could go home this afternoon. This is really great news. HOWEVER, Melanie is slightly hesitant to go home today. Witt has had a lot of head congestion since he came off the ventilator and that is affecting his osat quite a bit. Through the night it stayed 88-91 which is definitely three or four points lower than where it has been. Witt's lungs sound good and it is expected that nasal congestion would cause the drop. Mel just wants to be sure that something isn't beginning with him. She brought it up at rounds and the doctors feel like he is good to go home but Melanie wants to talk to the cardiology fellow one more time. And of course, since she asked the nurse to contact the fellow Witt's osat has stayed above 90! We really would appreciate your prayers for discernment. I know God will lead Melanie in what should happen's an amazing thing to get to witness!

Monday, January 4, 2010


Witt's Room Was A Party Room!

It's been a happy new year for Witt! He has had absolutely no problem on his toddler formula and has been eating tiny bits of baby food. The doctors are getting his medicines very close to a good home schedule. AND the plans are for Witt to go home by the end of the's already been 3 weeks! Today Melanie and Austan are meeting with someone from the Wheelchair Chair Clinic to discuss and hopefully order the proper and necessary equipment for Witt. They have special strollers and one particular piece of equipment that will help(and make) Witt put weight on his legs. Hopefully, this equipment can be ordered and received within the month but the whole process usually takes a while. For now we are looking forward to having Witt home very very soon!!!!

Friday, January 1, 2010

HAPPY NEW YEAR...2010...WOW!!!



Today is the big change in Witt's feeding. He is being totally switched to Peptamen Junior formula. It's being diluted with water so that Witt gets the right fluid amount at 27 calories per ounce. The Peptamen is not going to be gradually added in. It will just be given as his next feed. Please pray that he tolerates it just fine!! That's the only change for now but that's a lot. I can't imagine what God has in store for Witt, Melanie and Austan this year but I can imagine that God will be glorified as He directs their every step!!!!