CARDIOLOGY APPOINTMENT

Witt had to be up early and dressed for his cardiology appointment. This was his first outfit for the day but it didn't last long!



Witt had a great check-up today with cardiology! He is still holding his own which we are grateful for especially since he has thrown up at least once everyday. Witt has actually gained some weight and his chest x-ray looked good for him. The cardiologists think it's probably the medications causing his stomach to be upset. At least Witt is not making the "grunting" noises and grabbing at his stomach tube nearly as much! He will go back in 2 and 1/2 weeks on September 18th. I believe his cardiology appointments will be on Fridays now that he is being followed by the cardiac myopathy team. It's not only important that Witt's mitral valve not leak more but also that he not catch even the common cold. I am praying that God truly is a shield about him...a shield from any illness!!!

WITT SAYS: "NO MORE PICTURES"

BUT of course there will be plenty more pictures taken and videos! Witt seems to be doing well except the stomach thing. He continues to throw up at least once a day. What's hard is sometimes but not always it is during the feed when he take some of his medicines. Its important he get all his meds! Tomorrow Witt goes to the cardiologist however it wont be Dr. Macicek...I think he's out of town. Witt will be seen by Dr. Jeffries who is on the heart failure team.
Melanie and Austan have had the weekend alone with Witt to settle back in at our house(their house is getting close to being finished). Jim and I took a weekend away with the waverunners! From the video Mel sent I can see Witt was enjoying himself...trying out some things that were a little too big for him back at the first of June!!!

NAPPING AT HOME!

Witt is resting better today. Yesterday was a little tough. He threw up several times and his oxygen saturation was dropping. Witt had taken his diuretic and heart medication right before he threw up. Melanie made a call and Dr. Macicek said to give the medicines(one partial) again. Witt seems to be doing better today.
Last Wednesday a member of the transplant team came by. He concurred with Mel and Austan's plans for Witt right now...not to move forward just yet on seeing if Witt qualifies for a transplant. Witt will be followed now by the heart failure team. The great news and blessing is that Dr. Macicek will still be Witt's cardiologist. Melanie asked for this to take place. The cardiologist team will keep an eye on Witt and will still be talking about him in their meetings. They will let Melanie and Austan know if and when it's time to move forward with the transplant process. For now Witt is home! Our immediate prayer request is that Witt remain healthy...not just his heart but that Witt doesn't catch a respiratory infection. We are closing in on flu and cold season!!!! Monday Witt has a check-up with Dr. Macicek. No echo will be done but I assume there will be a chest x-ray. Witt, Melanie and Austan are still adjusting to everyone being home. That's a great thing to have to adjust to!!

TRANSITIONS

As you can see handsome Witt is transitioning quite well to being home again!


We appreciate you joining us in praying for many great days at home, as well as wisdom and peace right now during this transitional time.



Mel made this poster to help ease the transition and to keep track of when to give each medicine.

Thank you for your constant love and prayers!

"THERE IS NOTHING SO PLEASANT AS COMING HOME AGAIN." -Margaret Elizabeth Sangster

Look who is home from the hospital...

our favorite 10 month old!!!

It's been 75 days since Witt hung out on this couch,
75 days since Mel walked through this door,
75 days since the weenie dogs have seen Witt or Mel,
75 days since Austan woke up and got ready for work
in the same place as his favorite two people,
and there is MUCH rejoicing today!

Thank you God for this joyful homecoming.

Love,
Annalee

GLORY...GLORY...GLORY!!!!!!!!!

Hopefully one more day! The doctors haven't rounded yet but I think a lot of the decision on going home will be based on the results of Witt's chest x-ray and labs from this morning. Right now Jennifer(OT) is trying to get Witt to take a bottle. We have discovered that Witt very much has a WILL! And it's Witt's will to not take a bottle right now! He has done very well at times and refuses it totally at times.

WAIT....WITT IS GOING HOME TODAY!!!!!!! VERY SOON!!!!! THIS POST CAN WAIT!!!

I have quoted this verse before but want to post it again: "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living."

The Lord has blessed Witt beyond imagination...the Lord has been good to our families. All glory and honor to God...He is worthy!!!

Witt is loving his balloons!

WAITING FOR FRIDAY!

This is Witt's "I'm so cute" look!!!

This is Witt's "I look like my Daddy" look!!!

The doctors haven't made it to Witt yet on rounds. Probably because he is no longer on step down status. We have learned in this hospital that the more critical patients are seen first at rounds. Witt had a great day yesterday. I don't believe he threw up any feeds although he still gags and coughs a lot! We took Witt for another stroller ride. I am not sure if we or Witt enjoy it more! I counted our steps and figured out that 10 laps around the floor are a mile so that's what we did...you can tell it's time to leave! Witt's osat number continues to be great as do all his other numbers. He is still on a path to going home on Friday!! There is still no word back from the transplant team on whether Witt would have to have another cardiac catheter and also be intubated for an MRI. The answers to those questions would help Melanie and Austan decide whether or not to move ahead in the process. Right now regardless the plan is for Witt to go home Friday...that's what I am hoping and praying for!

GOING HOME FRIDAY!!!!!!

The thought of going home puts a smile on all our faces!

The doctors said today that the goal is for Witt to go home Friday!!!! Honestly, I am very excited but still a little reserved! If Witt continues on this path, he will be headed home Friday. They are still tweaking medicines to get him on a home regimen...nothing too major. One change yesterday was to increase Witt's beta blocker slightly. The thought is that this will slow his heart rate down just a little and actually also help his lungs. They want Witt at his best for home. Yesterday, Witt went for a stroller ride on the floor. Not only was it good for me and Melanie but Witt enjoyed it too!

Witt continues to take a bottle of thickened fortified formula before some of his feeds. The amount varies from 1 to 2 ounces for now! His entire feed is 4 ounces. The doctors have said Witt can take as much by bottle as he will. The jury is still out on the milk allergy. The plan is to leave him on the fortified formula then Melanie can try breast milk again back at home.

"He will redeem my soul in peace(He has!) from the battle which is against me, For they are many who strive with me."

This morning I was reading Psalms 55. I wholeheartedly praise God and thank Him for what He continues to do in my life...in Witt's life but as I read verse 18 I thought of all of you! I don't even know all of you who are praying for Witt and all my family and that blows me away! Thank you for striving with us...thank you for standing in the gap and striving for us...it brings me to my knees!

10 MONTHS OLD YESTERDAY!!

Witt turned 10 months old yesterday...WOW...what an amazing, loving God! Witt's "present" today was to take him off step down status. For now Witt is in the same room just off the monitors and vitals are taken a lot less often. He is also on a portable pulse/oxygen monitor which means Melanie can take him for walks and a nurse doesn't have to walk with them! This morning was also a changing of the guards...new attending and fellow. Witt's stomach is a little better and this attending would like to talk to the nutritionist and gastro doctors about changing Witt to a 24 calorie/ounce formula instead of 27 calorie/ounce that he is currently on. If Witt doesn't need the extra calories for weight gain the attending would rather try this first to see if it helps. Evidently this seemingly small change could make a big difference in Witt's digestion. OR not!!! There is always the "or not" but that's what you have to deal with when you are ruling things out. If Witt improves on the 24 cal/oz then at some point Mel could try Witt back on fortified breast milk to make sure about the milk allergy. Melanie and Austan should hear back soon from the transplant team...hopefully today or tomorrow. Our prayer today is that Witt continues to hold his own as steps are still being taken to get him ready to go home!!

Witt was awake early but resting now!!

CALM WEEKEND!

Witt's been doing real well this weekend. It has been like most weekends in the hospital...no changes unless the patient needs something and Witt didn't! The doctors are still trying to figure out the stomach issues and the possible milk allergy. Witt in some ways is doing better but the formulas seem to upset his stomach. Melanie said he has not thrown up after a feed today but has come close a couple of times...still that's an improvement! Witt might be moved out of the step down room (which is close to a critical care room) to a regular room on 15 tomorrow or Tuesday!
Dr. Morales (the heart surgeon) stopped in yesterday. He told Melanie that he never expected Witt to be doing as well as he is right now! Dr. Morales said he expected Witt to have to stay on the ventilator and require some kind of more immediate intervention on his heart! Our God is Mighty...Mighty to Save! Tomorrow, Melanie and Austan might hear back from the transplant team. Right now we are basking in the miracles that God has already done and praising God for who He is in Witt's life!!!

Witt tried trading in his pacifier for his hand!

SEEKING GOD'S PLAN!

"Offer to God a sacrifice of thanksgiving and pay your vows to the Most High; call upon Me in the day of trouble; I shall rescue you , and you will honor Me."

I know that God has a plan, a plan to rescue Witt. I just don't know what that plan is so I continue to praise the Name of God...to lift the name of Christ and ask God to reveal in His perfect timing the details to Melanie and Austan so they may walk right in those plans all the while being carried by Christ! I pray that during the waiting God is glorified...sometimes I find it harder to lay it all down and wait!!!!

Yesterday, Melanie and Austan met with the doctor from the transplant team. They have some very hard choices to make. Just going through the process of seeing if Witt would qualify could put or keep Witt in the hospital. Witt may need another cardiac cath test done and an MRI both of which would probably require Witt to be intubated(on the ventilator). Pray that God reveals each step to both Melanie and Austan and that their unity and peace are affirmation!!! For now they are waiting for the doctor to get back with answers for them. Hopefully that will be Monday. Once they have some more answers decisions will need to be made...whether or not to even start the process now. They could decide to wait a bit before even seeing if Witt qualifies or begin immediately. Melanie and Austan need our prayers. They don't necessarily need are our opinions but they need our prayers! They seek God's opinion...they seek God's plan for Witt. They are seeking guidance from Witt's doctors especially Dr. Macicek. Please pray for everyone involved in this that God's truth reigns!

We know that laughter is the best medicine...especially Witt's laughter! Turn your volume up so you can hear what I believe is a joyful noise to the Lord!!!

MEETING TODAY!

Witt is doing great! The doctors are very pleased with where he is and how he is doing. Witt hasn't needed any intervention like more diuretic for several days! Today Witt is going back on nutramagen because for the last couple of days on the most broken down formula Witt was throwing up. Witt will remain on this formula for several days then most likely go back to breast milk for a few days to see if there are changes that indicate a milk allergy. The doctors also said that Witt will probably move out of the step down room and into a regular room the first of next week! What this means is Witt will only be on a pulse/oxygen monitor like at home. Melanie actually will be able take Witt for walks on the floor without a nurse having to go with them. This is a major step closer to going home!!! The decision will be made Monday after a chest x-ray and labs. Melanie and Austan meet with a member the transplant team today at 2:00. They will most likely will have a lot of questions answered and will have even more questions to ask. Please pray for God's guidance for Melanie and Austan...with Witt most the questions have complex answers with complex decisions. Over the next days Melanie and Austan will be gathering a lot of information from man and they need God to direct each decision! They desire God's plan for Witt's life!

Witt is definitely the cutest dresser on 15!

Bottle time!

Witt love his daddy!

Witt and Austan!!

CHRIST, MY STRONGHOLD!

"I love You, O Lord, my Strength. The Lord is my Rock and my Fortress and my Deliverer, my God, my Rock, in Whom I take refuge; my Shield and the Horn of my Salvation, my STRONGHOLD. I call upon the Lord, who is worthy to be praised, and I am saved from my enemies."

God has not just saved us from anger, hopelessness, despair but has saved us to peace and joy!!! There is no other answer but the very presence of Christ. He has not allowed anything but Himself to take a strong hold of us!!!!

Witt had a good night last night that included a bath! Here are Mel, Austan and Witt right afterwards!

Witt and I woke up about the same time this morning

Witt played in his bed for quite a while...


Next...Melanie got to give Witt a bottle! Witt is allowed 2ounces a day of thickened formula!!


Thank you so very much for your prayers...I am humbled everyday to know how many take time to pray for us! Thank you, thank you, thank you!

DOCTOR'S MEETING

I will start this post with what I know....what the Voice of Truth is telling me: Our God is Mighty, He is Mighty to Save and Witt is already His miracle! The cardiologists wanted to talk to Melanie and Austan about the possibility of a heart transplant. The doctors pretty much agree(Dr. Morales with them) that replacing or repairing the mitral valve is not a possibility. It can be done but it would put Witt through a surgery that would most likely do no good. Right now Witt is not needing to be rushed into surgery but Witt walks a fine line between improving and needing a transplant. If Witt were to get worse or catch a virus, he might need immediate intervention for his heart. They wanted to present the possibility of a transplant for Melanie and Austan to consider...PLEASE, PLEASE pray for Melanie and Austan. Their walk as parents is unimaginable to most of us! Pray for wisdom, pray for God to reveal His plan for Witt to them. If they decide to choose the transplant then Witt and they will have to go through a process to just see if Witt qualifies. He would have many evaluations including neurological. All the information would be gathered and then goes to a board who make the final decision. The immediate plan is to get Witt home. They want to try to figure out his stomach issue and he needs to go about a week without needing medical intervention like more lasix, etc. SO, where are we? We are right in the grasp of our God Who loves Witt more than I can imagine. I am and will beg God to intervene. The doctors fully expect Witt's valve, heart and overall condition to deteriorate. I expect God!!!! I pray that God does the unexpected and shocks them. All my hopes and expectations are in Him...my peace and trust is in Who He is and His plan for Witt.

UPPER GI, SWALLOW STUDY, DOCTORS MEETING

Witt did really well in yesterday's upper GI. The results show that everything is working as it should be!
Witt and Melanie waiting for the upper GI to start!

On the way back from the upper GI...a really tired boy!

After a pretty good night's rest today started with the swallow test.

That went well too. Witt didn't aspirate at all on the pureed foods and didn't on liquids with the nuk nipple but he did aspirate on liquid with a different nipple. He is good to go on continuing his feeds on baby food!

Witt taking liquid from a bottle!

The doctors just came in and said they (along with Dr. Macicek who wants to be a part) would be back around 1:00 to talk to Melanie. Please pray for good news, for peace and for all of us to remember that God does get the final say in everything!!! Please pray that we do listen to "the Voice of Truth" that Cheryl talked about yesterday:

But the Voice of truth tells me a different story...the Voice of truth says "do not be afraid!"...and the Voice of truth says "this is for My glory"...Out of all the voices calling out to me...I will choose to listen and believe the Voice of truth!

VOICE OF TRUTH

But the Voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth!
~Casting Crowns

This song has really touched me lately on so many levels. God, our Father, IS the Voice of truth and He is worthy of all praise ALWAYS! There is so much we don't know about Witt but, THAT, we DO know!!!

Today the earthly voices delivered some crushing news...the echo shows that Witt's mitral valve now shows signs of stenosis, a narrowing of the valve that prevents blood from moving efficiently through his heart to other parts of his body. The doctors, including the surgeon, Dr. Morales, will conference tomorrow and then brief Mel and Austan of their options. Valve replacement is definitely being discussed now...that would require another open heart surgery. No matter what the outcome of tomorrow's conference, "I will choose to listen and believe the Voice of truth!"

Right now, Witt is having an upper GI done to try to get some answers about his discomfort when he feeds. Poor little guy has really been hurting. I am not sure when we will hear the results of the upper GI but we will certainly post when we do.

The song continues...

Oh, what I would do to have the kind of strength it takes
To stand before a giant with just a sling and a stone
Surrounded by the sound of a thousand warriors shaking in their armor
Wishing they'd have had the strength to stand

But the giant's calling out my name and he laughs at me
Reminding me of all the times I've tried before and failed
The giant keeps on telling me time and time again
"Boy you'll never win, you'll never win."

But the voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth

But the stone was just the right size to put the giant on the ground
and the waves they don't seem so high from on top of them looking down
I will soar with the wings of eagles
when I stop and listen to the sound of Jesus singing over me

But the Voice of truth tells me a different story
The Voice of truth says "do not be afraid!"
And the Voice of truth says "this is for my glory"
Out of all the voices calling out to me (calling out to me)
I will choose to listen and believe (I will choose to listen and believe)
I will choose to listen and believe the Voice of truth

Mel and Austan have chosen to listen to the "Voice of TRUTH!" They continue to bravely stand toe to toe with this giant, confident that our Loving Father has equipped them and their precious Witt with all the armor they need! They are STILL my heroes...slaying giants and giving God all glory!

As Karen asked earlier, would you sing with us today?!? We beg you to pray for Witt, for Mel, for Austan...and, please SING PRAISES with us today and everyday!

How Great is Our God, indeed.
Cheryl

CHRIST, MY ROCK

It's 4am and I have slept a little and been up a little but Melanie has been up the whole night until about 30 minutes ago. I am begging God for some answers! Witt has been up most the night until just a little bit ago with his stomach bothering him. I say stomach but we are not exactly sure what it is that is hurting...stomach, intestinal tract, etc. All we know is that he moans, grunts and pulls at his feeding tube. At the 9pm feed the doctors started Witt on even a different formula that within a few days should give us a pretty definitive answer as to whether or not he is allergic to milk. I think that you have to give Witt a couple of feeds to even adjust to the different formulas. At least for now they both rest...for now my heart breaks for both of them. I am begging God for answers and this is how He answers me....God fills me with great strength, endurance and hope! I hear Him say over and over again that Witt is His and He is Magnificent!


(Psalm 61:1-3) You have heard my cry, O God; You give heed to my prayer! From the end of the earth I called to you when my heart was faint; You lead me to the Rock that is higher than I. For You have been and are a Refuge for me, a Tower of Strength against the enemy.


In the absence of real concrete answers to my questions, God answers me with Himself and there is no greater answer, no other answer could bring the peace, joy and strength that Christ alone brings. He truly knows better...He knows that maybe it's not answers that I ultimately need but the One Who has all the answers and will let me know in His timing! For now we don't have the results of the echo cardiogram but I do have video of Witt during it!!

As I finish this post this is playing on Witt's ipod: How great is our God, sing with me how great is our God, and all will see how great, how great is our God. "Sing" it with me today on Mel's behalf...sing it with me on Witt's behalf and all will see how great is our God...glory!!!

ECHO CARDIOGRAM!

Sometime today Witt is having an echocardiogram. They want to see how the mitral valve is doing! Witt's stomach is still bothering him...maybe not as bad but its still causing him to not take good slow deep breaths. It could take several days to discern if he has a milk allergy. Also he's been up since 5am so Melanie is pretty tired. Even though it seems like Witt has made very little progress that's actually not the case. Really every change that needed to be done in order for Witt to go home has been done. These next days will tell us if he can tolerate all the changes especially getting both diuretics by gtube instead of IV. Tomorrow a swallow test has been ordered. Witt may also have a gastric test done to see how fast he digests things. The big happening for today is the echo on the heart! Please, Lord...intervene and correct Witt's valve if it needs it but Lord don't let my joy, my strength be dependent on any circumstance. You are my Hope, the Stability of my times!!!

X-RAY BACK

Witt's chest x-ray came back. His lungs look good! He does however have a lot of gas that is interfering with him taking deep breaths. His oxygen saturation seems to really be affected when he is being fed. However, with his latest feed that just finished his osat stayed up! He slept through the entire feeding...one advantage to a feeding tube!

Sleeping and "eating" with some of his stuffed animals...of course one is a weinie dog!

ANSWERS PLEASE!

The doctors did start Witt on the broken down formula yesterday afternoon to check for a milk allergy. They also took a stool sample and there was a tiny trace of blood but not enough to to see with the naked eye. One of the signs of possible milk allergies is blood in the stool. Witt will be on this special formula for 7 days. Melanie is a little concerned because his oxygen saturation keeps dropping a bit and is not staying as high overall. A chest x-ray was ordered for tomorrow but she and Austan were going to see about going ahead with it today. They want to be sure nothing is going on with Witt's lungs. Please pray that we get a final answer on whether or not Witt does have a milk allergy. Witt's stomach is still bothering him which we think is what is affecting his breathing. He doesn't take really good deep breaths when its hurting. This causes his oxygen saturation to drop because he isn't expanding his lungs well! We need a definitive answer on the milk allergy to help figure out why Witt seems to not feel as good as he as been feeling!

MILK ALLERGY?

In most ways Witt is doing better! Through the night his oxygen saturation stayed up. His lungs seem to be doing well with just the CPT. He still has his stomach issue that seems pretty uncomfortable. The gastro specialists came by yesterday and OF COURSE Witt was not doing what he has been doing for the last several days! They made some changes in his medicines and recommended that Witt be "tested" for milk allergy. This involves taking Witt off the fortified breast milk and putting him on a special broken down formula. Witt will need to remain on this for several days. I believe that the change for today is to give the other diuretic in the feeding tube and not IV. Please pray that with this change Witt continues to hold his own on the fluid levels...okay...pray that he pees!!!! With each of these changes Witt is one step closer to going home!!!

Dr. Austan playing around!

My view this morning!!

CUTEST COUCH POTATO!

There are some lazy days here at the hospital! Witt has mastered the art of being lazy in his "baby recliner"...where's the remote?!!!!

FEELING BETTER!

Witt is feeling a little better today. His osat and respiratory are doing a little better too! The doctors are not worried about this little set back. Witt's fluid balance ended up at 210ml positive. Today he will not get the extra lasix by IV. Even though Witt is not reacting too well to the breathing treatments the doctors want him to still get it twice a day. This treatment really helps to expand the lungs. Witt's stomach(or abdomen) is still bothering him but not as bad. A gastro specialist is going to be called in also to take a look at Witt. Most likely, Witt will need to be followed by gastro specialist anyway since he is on a feeding tube. The doctors said at rounds that they are very pleased with where Witt is in his recovery. They said he has been making good progress. It seems like slow progress but the fellow said there have actually been big changes. They want to sort of push Witt to the limit of change he can tolerate each day but not so much that he has set backs! For today they have ordered no changes. Witt is doing better and they want to give him a break!!

Good Morning!

THANK YOU FOR YOUR PRAYERS

Witt is resting now...still not feeling great but he is resting well.

TODAYS PLAN

For now here is the plan! Witt's chest x-ray looks a little more hazy so he will get one extra dose of lasix by IV. Witt's blood work actually looks good. Melanie just had the Resident come in and look at Witt. It is obvious that Witt doesn't feel great. The doctor increased the milk of magnesia dose. He said from yesterdays abdominal x-ray that you could see lots of gas and some stool. Witt will also get lots of mylicon and now some tylenol. That's the plan for now. The doctor said Witt could appear to feel worse today as the milk of magnesia is working because it also cause stomach cramping! Pray for Witt and Melanie!!

PRAY FOR FORWARD STEPS!

Please pray for Witt. The last couple of days have been rough. He has still been dealing with abdominal issues which are affecting his respiratory rate and oxygen saturation. At least that's what we are hoping because Witt's respiratory rate stays high quite a bit and his oxygen saturation drops to 90. This seems to be associated with his abdominal issues that are causing him some distress. Witt was also fluid positive by 350ml which is high for even Witt. The doctors have ordered a chest x-ray and blood work. They need to make sure that the heart isn't playing a part in this. Please pray that the mitral valve is not leaking more. Also, pray for great wisdom and discernment concerning Witt's "stomach" issues. It feels like Witt is on the verge of taking steps backwards. We have been here before with him and are begging God to lead us forward!!! Please pray the we narrow our focus to only God and not the ever changing circumstances around us. We will always thank God for forward steps but it is on God and not our steps that we depend on for our joy...the joy of the Lord is our strength!

ANOTHER CHANGE TODAY!

Going home is mentioned more and more! Still no time frame and honestly I don't even let myself think too much on it yet!! Witt did well with oral(actually by feeding tube) diuretic. He was still fluid positive but within the range of where he seems to be okay. He did put on a little weight yesterday so that will be watched closely. The tricky part is we want Witt to gain weight but not water weight! If he starts gaining too much we will assume it is more water than real weight gain. Not that long ago we were cheering with each ounce he gained and now we kind of hold our breath!!! Witt is still on one more IV diuretic that needs to be changed to the feeding tube. Today, though, the change is in his breathing treatments. Every 6 hours(even in the middle of the night!) Witt had been getting a pretty harsh but effective treatment(IPV) that required a mask to force the air and medicine into his lungs. That is now just twice a day. As I have said, tiny steps but steps that prepare the way to go home! Please pray that Witt continues to handle these changes and doesn't just hold his own but actually improves!!! I have said it before and will continue to say it...we cherish your prayers...we appreciate the time that each of you take to read the blog and pray for Witt...it is priceless to us!

Witt is so precious when he's first waking up!

CHANGING THE LASIX TODAY

Today they are changing Witt's lasix from IV to mouth. The doctor called this a big change. The diuretic is more effective by IV but obviously Witt can't go home taking anything by IV. He remains about 250ml positive on fluid but they are considering that his normal range. Once again the doctor said that Witt is looking very good. He is still on the laxative...that can take a while to fully start working. Yesterday Witt started back with OT. Jennifer(his OT while in the hospital) worked with him on eating solids again. These hospital stays really bring Witt's progress in this area to a halt. Jennifer said he did real well though. Please pray that Witt's fluid level stays where it has been even with changing the diuretic. Although Witt has been making forward progress, a change in his fluid balance could really affect him. I haven't mentioned it in a while but please continue to pray for healing of Witt's mitral valve. For now it is still leaking but not enough to necessitate surgery. Witt is now over 2 months in the hospital. He came in the first of June. I know Mel and Austan are past being ready to get him home. The most important thing is God's timing in all things...especially in Witt going home!

A tiny snippet of OT!

STILL GOING IN THE RIGHT DIRECTION!

Witt is still progressing in the right direction! Today begins more tiny steps in the effort to take him home. Witt will receive his lasix(diuretic) by mouth instead of IV. This may seem insignificant but its not. The lasix is more powerful by IV and obviously Witt needs to be taking it orally to go home. Oops, Mel just told me they are waiting till tomorrow to change the lasix...give him one more day! Twice yesterday, Witt was given a suppository to help with the constipation. Today he will get some sort of laxative. The jury is still out on how constipated he is and if that is the cause for his "grunting" and grabbing at his stomach. Hopefully this is the answer because it seems to have a pretty easy solution. The doctors had talked about turning his oxygen down from 1/4 liter but they only want to make one change at a time. If Witt reacts negatively to the change they will know exactly what is the problem. The doctor said Witt will remain in the step down room probably till he goes home. The only difference in this room and the regular rooms on 15 is the monitor. In this room Witt's heart rate, respiratory rate and oxygen saturation are all being monitored. In a regular room he would only be on the oxygen saturation monitor like he has at home. Please pray that Witt continues this slow positive progress. Pray also that the laxative gives him some relief. Going home is still off in the future somewhere but it is more and more in the near future! Please pray that we finish this race...Witt's hospital stay...strong! Pray that till the second we leave this room that the presence of Christ is felt here!

Witt was up quite a bit through the night...time for him to sleep!

THE LION AND OUR LAMB

Witt's fluid level was a little better yesterday so the doctors are still able to hold off on giving him the extra high powered diuretic. His chest x-ray came back just fine. Recently Witt has started making this "grunting" sound and grabbing at his feeding tube. He started this right after the surgery for the feeding tube back in late May. This is actually what he was doing on the Friday back in June when Mel and Austan first brought him to the ER , however, it has nothing to do with Witt going into the hospital and needing surgery. Melanie has talked to Dr. Wessen's(surgeon who did the feeding tube) nurse and several others about this. They usually ask if Witt is dirtying diapers...wanting to make sure he isn't constipated. The answer is always that he is dirtying diapers in fact they are pretty runny. Melanie mentioned it again today at rounds. A doctor came back and said he had been thinking about it. He believes that it is a constipation issue. The fact that his dirty diapers are runny support this. Not to be too crude but the only thing that can come out is runny because of the constipation. There are so many "I never's" involved with Witt and this may top the list...I never thought constipation would be an answer to prayer! Witt will now get some help with constipation and hopefully he will be more comfortable! My goodness...there is no detail of life that God isn't concerned with!!!

Recently, I posted a picture of Witt with his stuffed lion that Deela and Shaiely gave him. Debbie York commented the "Lion and the Lamb." We all know that Christ is The Lamb but Witt is our little lamb! I will never look at the little stuffed lion without being reminded of her comment and of God..The Lion Who watches over Witt our precious lamb!!!

I love both their reddish manes!!!

SLEEPY DAY...AWAKE AT NIGHT!

This was Witt most of yesterday so consequently he was awake most the night! He was happy but awake. For some reason babies tend to really get their days and nights mixed up in the hospital. Witt is pretty much messed with 24/7!! He was fluid positive yesterday by 380ml. The cardiologist ordered a chest x-ray to make sure the extra fluid is not affecting the lungs. If its not they will still hold off on the extra high powered diuretic. Witt is currently on 2 other diuretics. Most heart patients are on diuretics because the leaky valves and other heart issues can cause fluid build up. Poor Dr. Macicek tried to explain it to me and I take it at face value that this happens but I don't really grasp why!! Thankfully I don't even need to know why there is fluid build up to run to the Throne of Grace and ask God to take care of it!!! That is my main petition that I kneel at His throne with today...please just "dry" Witt's little body up and take care of whatever reason is causing it! BUT before I lay out my requests I am kneeling before the Lord saying: "Holy, Worthy is the Lord, Almighty, He is Able, He is Mighty to Save...all glory is His!"

CELEBRATING THE SMALL STUFF!

Witt is still headed in the right direction!!! His creatinine level is back in the high normal range and his fluid balance is much better! This weekend the doctors don't plan on making any changes. They want to just leave things alone till Monday. However, on Monday they might lower Witt's oxygen more with the hope of taking him off completely at some point. Today Witt also will be seen by both OT and PT. For the first time "going home" was even mentioned as a near future possibility!! It is still not talked about in any real time frame but just the sheer mention of it is amazing!!

One of the Pastors(John Young) from our church came by for a visit. I am always encouraged by his visits and especially his prayers. John said he was impressed by Mel's contentment. Melanie does show an amazing undoubtedly God given contentment. Besides the very obvious situation with Witt, Melanie has not been home in 2 months...her house has been rebuilt without her(what an incredible job Austan has done!)...life as she has known it has changed! We are told that one of the big things wrong with Americans these days is the need for instant gratification. Maybe it's not the instant gratification that's so wrong but what we look to for the gratification. Melanie has become so content and gratified by the small things...the tiny steps...that God has accomplished. She doesn't overlook the things that most of us take for granted. God is doing so much in and for Witt that does bring instant gratification!! Today, during John's prayer, Witt growled(grrrrr's) the whole time and was smiling at Melanie. That brings me huge instant gratification!! Somehow recognizing God's hand and being satisfied in the tiny details helps to keep a Godly contentment. Thank You, Lord for every little step...thank You that You do satisfy the soul!!!

Waiting for therapy!

BATH TIME AND MORE!

Witt is doing well on the lower oxygen(1/4). Today they lowered his methadone to one dose a day. The doctor also withheld one of Witt's very strong diuretics. We thought that Witt would be able to be off most the monitors but he has to remain on them but with only 3 leads instead of 5. At least with the fewer leads Melanie can treat the areas with the blisters. The doctor was okay with it but Witt would have had to be moved out of the step down room. We want him watched closer than how he would be watched in the regular rooms on 15. Honestly because Witt is doing so well that the monitor alarm's don't go off very much unless he is awake and moving around.



One of Witt's almost daily activities is his night time bath. At home he loved baths...not as sure here!

After the bath its treatment and back on the monitor!

In his pj's ready for bed!

PRAISE GOD FOR TINY STEPS!

Witt continues to take TINY STEPS in the RIGHT direction! The doctors are very pleased with this slow, steady, positive progress. He is being closely monitored every day but the doctors are making such slight changes that they really only gauge progress in weekly intervals. They learned from Witt's setback a couple of weeks ago how critical it is to make slight changes in his treatment and watch very closely ANY reaction from Witt. His oxygen has been lowered to 1/4...his osat had been holding steadily at 100 at 1/2. He remains fluid positive by 250ml but that doesn't reflect fluid loss that they can't measure like sweating and, even, breathing. Dr. Macicek continues to hope that Witt's fluid retention is a result of the major surgery. They are withholding one of the strong diuretics today and will closely monitor. Witt can't remain on this level of diuretic "forever" but he certainly can for the near future.


Speaking of Dr. Macicek...what a blessing he has been to Witt and the entire family. Karen said that he just spent at least 30 minutes with Mel answering all of her questions and just visiting with them. He will be out of town for a few days but will still be monitoring Witt. He holds a special place in our hearts and we can never thank him enough for the incredible care he has given Witt!!!

Karen said that Witt fell asleep looking at his lion...

she thinks he was admiring its RED hair!!!

Have a BLESSED day!!!
~Cheryl

SETTLING INTO NEW ROOM

The stuffed animals and balloons made the trip to the new room!

Witt is respiratory rate, heart rate, oxygen saturation and CO2 numbers all continue to be right where we want them. He still is fluid positive...for now about 250ml positive. His creatinine level is also a little high but that is because of all the diuretics and has nothing to do with his kidney function...kidneys are just fine. The doctors are still trying different combinations and amounts of diuretics. Melanie got permission from the doctor to take Witt off all the monitors except the pulse oxygen. Witt has little blisters on his chest from all the monitor stickers. Normally for Witt his Osat level is a good indicator of how he is feeling. I know God promises to be to us anything we need. Witt needs the fluid to come off and stay off. Guess we need God to be Witt's diuretic! Lynn said that if God could dry up the Red Sea, He could surly dry out Witt! At any rate, Witt seems to be feeling much better if the look on his face is any indication!!!

WITT'S IN A ROOM!!!

Can you believe what happened when I left the hospital for a few hours...Witt got moved to 15. Fortunately, Mel did tell me what room!!!! Tonight I am grateful for Witt's progress for sure but I am also grateful for the smaller things:

A bed!!!!
Pajamas!!!
A Shower!!!
A Bathroom of our own!!!!
Melanie, Witt and I will actually spend all the time in the same room!!!

I will however really miss the fellowship with my new friends in the recliner room. First thing tomorrow morning I am headed down to check on them!

AN ATIVAN-LESS NIGHT!

Yesterday Witt's ativan was stopped. This is a good thing but it made for a hard night. Witt was a little cranky and did not sleep much. However this morning he is sleeping and Melanie is resting in the recliner.

Not much action to this video but there is nothing sweeter!

Witt is breathing well and his "numbers" are all good! The issue still is his need for diuretics. As I prayed this morning, I asked God Himself to intervene. I asked God to everyday of Witt's life to miraculously pull any extra fluid from Witt's body. Wouldn't it rock the medical world if Witt didn't even need any diuretic!

Today my soul has felt burdened and sad. Not because of Witt but because of what has been happening in the recliner room. Yesterday 2 families came in. One family was sad but joked with us a lot. Sometime in the middle of the night their baby passed away. The other family's baby is 2 months old. She was found at her daycare with her heart stopped. She is still on life support and having many seizures. Please pray for these families...pray that He is their Strength, their Hope, their Comforter. As for me...today God had me read Psalm 3:3-4:

"But thou, O Lord, art a Shield for me; my Glory and the Lifter of Mine Head. I cried unto the Lord with my voice, and He heard me out of His holy hill".

He never lets me hang my head low...He is truly the Lifter of My Head and He restores my soul!!

LORD, LESS DIURETICS PLEASE!

Check out the clothes!

The new cardiology fellow came by today. They are trying to figure out how to wean Witt off some of the diuretics and still keep him from positive fluid level. Late last night they had to give Witt more diuretics because he was 200-300ml positive. He hasn't tolerated being weaned off the diuretic. We are not sure why the fluid builds up...if the heart is in anyway involved. Maybe by tomorrow we will have some more information! What I do know is we just need Witt to NOT need so much diuretics!!! That is the only thing standing in the way of moving forward to another floor. Witt stayed awake most the day smiling (flirting!) with the nurses and visitors. Melanie and I laughed a lot at him...yes at him!!! I was visiting with the grandmother of another baby in here who underwent a liver transplant. She said this is the worst experience she has ever lived through and the best experience. She said she knows that's a weird statement but I understand it. I would never wish this on anyone but I will proclaim for all the world that I know my God in ways that I never have and have experienced His faithfulness like never before. This might be some of what is the worst this life can throw at you but God sends His best to meet it!!!

Witt...he's part of the best!!!

SHIRT HEAD!

Every baby has to wear the "shirt hat" at sometime or another!








Witt is continuing to recover. Yesterday the doctors changed his diuretic regime in the weaning process. Last night Witt however was fluid positive so the doctors changed back for now. Witt continues to be on the right path but the doctors still want to take it very slowly. He is still in the PICU for just this reason. The doctors can move slowly and monitor Witt very closely with every change! It is hard to believe that this begins Witt's 8 week in the hospital. Honestly, it just doesn't seem that long! Isn't God good?!!!!!

HOLDING HIS OWN!

"Well...let me think"


Witt has been off the CPAP now for close to 24 hours. There was a little concern this morning because his fingers and toes were a little "purplish". The doctor ordered a quick blood gas and his CO2 was actually lower than when it was earlier in the morning so that is good. All of Witt's numbers look good especially heart rate and oxygen saturation. His respiratory rate a little fast but okay. Please pray that over the next few days that Witt's lungs actually get better and his fluid levels stay down. Please pray that he is able to breathe easy with just the nasal cannula! Also pray for Melanie and Austan...it is very hard to adequately put into words what their lives are like right now and I couldn't even attempt to say what emotions they must go through! I know they must be emotionally and physically weary!!!

But you know, this little guy sure brightens the day!

THE RACE

Witt continues to do well this morning. As you can see he is comfortably just hanging out without the CPAP and most of all the important breathing numbers are staying right where they should be.

Our friend Rise' drove in last night and is helping Karen with all the daily chores today.

Last night, Austan and I spent some good guy time chatting with the nurse and keeping Witt comfortable while Melanie was able to take a break. Fortunately, all went well while Melanie was away from Witt.

I have seen in the news a number of races recently, for example, the Tour de France and the Swimming World Championships.

As in many parts of our lives, we feel like we are in a race. Not so much of a race to beat others, but one that tests our endurance and persistance. We always gauge ourselves against others in many areas of our lives, but when we are just enduring hardships in our lives we know that the race has a different purpose. God's timing is perfect. His strength is sufficient. God constantly is bringing others to Him if we are paying attention to the hearts of seekers and broken lives He is gifting for us each day. It's our prayers for those we love and even those who don't even know us that help make us unique to the world. Our uniqueness and God's spirit will always draw others to Him. Its because of God's promises that He will ask us to develop relationships for Him so they will be sifted through the lives we live in Christ. So continue strong on your race and thank you for joining us on ours. Blessings to you.