Wednesday, September 30, 2009
Monday, September 28, 2009
Addtionally, here is a link to a benefit Golf Tournament for Witt and Elle that will be held in November. Pass it along to your friends and family if you would like to be a part of it. Have a great day.
Sunday, September 27, 2009
I had dreaded the start of the antique show this year with Witt still in the hospital but God truly is Faithful. Time and time again as the show approached I witnessed God's provision for Melanie, me and my family. I have seen it in Austan and his family, in my friends that rallied around and in our dealers that have cut us slack, stepped in, worked and are faithful prayers for Witt. I miss Witt but it is impossible to not be filled with joy to be out here where God is so evident!!!!~Karen
Saturday, September 26, 2009
Thursday, September 24, 2009
Wednesday, September 23, 2009
(from month 1 to month 11)
the doctors are still working hard to get witt's feeds regulated, and he isn't digesting very quickly. our prayer is he can get off continuous feed soon and go home.
in some ways it's hard to believe it's been almost a year since your birth day, but in other ways it's so hard to remember our lives without you! you have expanded all of our hearts for 11 MONTHS now! thank you for sharing your sweet smiles, adorable noises, constant miracles, and melting our heart day after day.
we love you dearly!
Tuesday, September 22, 2009
Monday, September 21, 2009
GROVER AND WITT DISCUSS THE ADVANTAGES OF BEING AT HOME
"Hey Grover move over this is my bed"
Sunday, September 20, 2009
Saturday, September 19, 2009
Friday, September 18, 2009
New baby bracelets?!!!!
Thursday, September 17, 2009
Witt's feed is now up to 20 ml an hour with a continuous feed.
His next step is to get up 30 ml an hour, then to 100 every 3 hours and not continuous.
We love this guy so much, and are thankful for all of you that do too!
Tuesday, September 15, 2009
Witt has been given an extra dose of lasix by IV. They also just took a chest x-ray also. He woke up with some congestion. A lot of kids have been admitted with respiratory viruses and the concern is always that Witt could catch something while in the hospital. Please pray for protection from the other illnesses going on here!!!
Monday, September 14, 2009
Witt woke up sounding a little junky in his nose and throat this morning. Mel and the nurse suctioned him. The doctor said his lungs sound good and not any wetter. He still looks a little pale but The doctors really want him to recover on his own without a blood transfusion. Witt hasn't had another blood test in the last several days because drawing blood can contribute to his low hemoglobin. Today's plan is to change him over from 10ml of pedialyte an hour to 10 ml of nutramigen at regular strength and gradually increase that amount up to 30ml. Tiny steps! Witt is also getting enough IV fluids per hour to keep the total amount of fluid at 30ml/hour. Witt seems to be pretty sore so at times he is not taking good deep breaths. Melanie just gave him a dose of regular tylenol and that really helps him to relax and rest. For now it is tiny steps, patience and finding our peace in God our Confidence! I was reminded once again this morning that He is all I ever need. Unfortunately, He is not always all I want. Today I had to ask Him to be all I want!!!
Sorry...I have a video but the hospital internet won't let me upload it for some reason.
Today Melanie and I took Witt, Bert and an IV pole for a walk. Witt loves his stroller and it sure feels good to get up and walk!
AFTER THE WALK!
Sunday, September 13, 2009
Saturday, September 12, 2009
I look at Witt's life and sing praise to my Lord. I remember the day that Witt was born and the tears of utter anguish not only for Witt but for Melanie and Austan. My God has indeed loosed my sackcloth and girded me with gladness. That's the big picture but I can also say that each day no matter the circumstances God has not allowed despair to reign. I don't know what even tomorrow holds for Witt but I know that God holds Witt! God is Mighty to Save and in that truth I rejoice. God is my Hope....as incredible as Texas Children's is and the doctors, they are not my hope. Whatever circumstances I will walk through in my life I know(because I have experienced it through Witt) that God will gird me with gladness as long as He remains my Hope and nothing else in this world. O Lord my God, I will give thanks to You forever!!
Witt is doing really well considering this is his second post-op day. I have asked you to pray for many specific things and this may take the cake. Witt needs to pass gas so he can eat! Sorry, but that is the greatest need. The x-ray this morning showed that Witt has a lot of gas in his intestine. He will not be able to eat until they know for sure his intestines have started working well after surgery. There is no concern. This is normal especially after abdominal surgery. BUT Witt is hungry and his hands just don't seem to do the trick!!
Friday, September 11, 2009
I am amazed at the joy and the laughter that Melanie and Austan continue to have. Witt even got in on the act right before he was taken back for surgery!
Thursday, September 10, 2009
Please pray right now for Witt...they have tried 3 times for an IV. The one that was in blew earlier this morning and he needs IV fluids!!
Witt is still on the schedule for surgery today at noon. They will probably take him around 11:00. Melanie and Austan will get to stay with him for a little bit before surgery. The best guess is that surgery will last 1-2 hours. Our immediate concern besides the surgery itself is the ventilator. Witt will be back on the vent and we don't know how long. Please pray that he doesn't have to be on it very long!!! Please pray that Witt's heart and lungs come through surgery just fine!
Please, Lord, be near to Witt. Let Your angels surround him in the operating room. I will extol You, my God, O King, and I will bless Your name forever and ever. Every day I will bless You, and I will praise Your name forever and ever. Great is the Lord, and highly to be praised, and His greatness is unsearchable. One generation shall praise Your works to another, and shall declare Your mighty acts!
After I posted this, I glanced at the blog. What caught my attention were the 2 pictures I could see at the same time...the one I posted today and the one on the left when Witt was just days old. I am brought to my knees praising Him as I am reminded that truly God is the Sustainer of Witt's life. Be still my soul and know that He is God, Witt's God!~Karen
Wednesday, September 9, 2009
Tuesday, September 8, 2009
Maybe Dr. Macicek is drawn to Witt's snappy dressing!
Monday, September 7, 2009
Its definitely a holiday around here. Witt is continuing to get better! His oxygen saturation is great which means the lungs are healing. He is no longer on any monitors except his normal pulse/ox. No surgery is scheduled yet. Hopefully we will find more out tomorrow since the holiday weekend will be over. I continue to pray for God's timing for surgery.
"Trust in the Lord and do good; dwell in the land and cultivate faithfulness."
I pray that during this time of waiting that we grow and grow in our faithfulness...that we do good and bring God all the glory!!!!
Sunday, September 6, 2009
Saturday, September 5, 2009
Melanie and I entertain ourselves watching dvd's...Witt is more of a Buzz Lightyear balloon guy!!
Friday, September 4, 2009
~Witt does have aspiration pneumonia so he is on an antibiotic to treat it.
~Witt's lungs are wetter overall so he is going back to a heavier regimen of lasix by IV.
~Witt is still "grunting" and gagging with the lower calorie(less rich), slower, continuous feed so you can probably assume the stomach issue is not from the feed itself.
~Gastro has backed down on being so firm that Witt is digesting slowly(slow motility) so he is now on Erythromycin to speed digestion up.
~Witt's BMP number is high. This number reflects how hard the heart is having to work. It could be simply because he is sick. The cardio myopathy team(Dr. Jeffries, et al.) has been asked to follow Witt also.
~Most likely Witt will need the fundoplication surgery to keep him from aspirating on what is in his stomach regardless of the cause.
Right now Witt has 2 major issues apart from the always present heart condition. Witt has been throwing up and Witt has pneumonia from aspirating on his throw up. The doctors are very dilligently trying to come up with an immediate plan and long term solution to both! The attending told Melanie that Witt would most likely be here for a couple of weeks in case she was making plans. Mel's most humorous response: "I haven't made plans since I birthed him!"
But, Melanie is walking in the hard plans that God has planned for her and Witt right now and doing it with the grace of God and humor!!!
Thursday, September 3, 2009
We have appreciated the doctors and staff here at Texas Children's and for us the cardiac fellows are a real stand out!!! Over and over this group of doctors show incredible compassion along with the necessary wisdom. The cardiac fellow today seems really on top of things for Witt. He believes Witt does have aspiration pneumonia from aspirating on his vomit. Witt is now on an antibiotic for it and being moved to a step down room on 15 which is actually the step up in care. It is obvious that Witt does not feel good! Gastro has already stopped by and talked to Melanie and Austan about a range of steps from something to speed up digestion to fundoplication surgery to stop Witt from throwing up again. The fellow also called pulmonary to consult. That will take place tomorrow. We feel like something is really being done now! Even though there still are no real answers yet as to why Witt was throwing up in the first place, his medical condition right now is being taken care of. Thank You, Lord, for the team of cardiac fellows!
We wait on God all the while we are still waiting on results! Right now they are trying to draw blood. Witt is a hard stick! They have to periodically stop to let him breathe...let me breathe! In wanting to always be honest and open I want to say that I am walking a fine emotional line. What blows me away is that because it is a fine line...God is always right here. Yes, I might feel like I am close to breaking BUT BECAUSE IT IS A FINE LINE, GOD, WHO IS ON THE OTHER SIDE OF THE LINE IS ACTUALLY VERY VERY CLOSE AND HE IS FAITHFUL TO HOLD ME!!!! The finer the line feels, the more I feel God nearer!!!
The resident just came by. Witt's lungs look a little worse from a couple of weeks ago. What the echo will confirm or rule out is if the heart (valve) is causing the lungs to be wetter. If it's not, Witt will probably need to go on antibiotic to treat them.
On one side of the fine line is despair but my Hope is on the other! I choose Christ...I choose Hope!
"I will bless the Lord at all times; His praise shall continually be in my mouth. My soul will make its boast in the Lord; the humble will hear it and rejoice. O magnify the Lord, with me, and let us exalt His name together!" Lord, let it be in me!!!~Karen
Witt is a chick magnet or at least a nurse magnet!
Wednesday, September 2, 2009
Here's where Witt is now...his respiratory rate is fast, even for Witt...he has held down Pedialyte so far tonight with meds...his lungs may be a little wetter but not significantly...his first bloodwork from this afternoon came back really good, including his blood gasses...the sweet little man just doesn't feel well. SO, we really need to rule out some big things before the docs can look further...
While I simply can't even begin to imagine what Mel and Austan are feeling, I know that I do speak for them when I say how truly THANKFUL we are for the people that bring Texas Childrens Hospital to life...these incredible folks dedicate their lives to this place to a degree that I just can't fathom...may God BLESS them and their families in a mighty and abundant way!
As Witt, Mel and Austan prepare to stand toe to toe with these giants once again, I pray that they have the strength of thousands to hurl those rocks!
It probably goes without saying that we beg you, friends, to pray for ANSWERS! I just pray that God would make it perfectly clear to the doctors what HIS plan is for Witt and what needs to be done to give our little man some relief!!!
Please pray also for renewed strength for Mel, both physically and mentally. Karen tells me that she is doing remarkably well..."amazing" was the word that Karen used to describe her, in fact! But she has to be exhausted and frustrated and scared and on and on. And pray for Austan as he was finally settling back into a "normal" routine with his family at home! Christ shines brightly through the Luphers but we need to stand with them, praying for them and loving them through these difficult times.
We will most definitely keep updating!
On my knees,