Christmas Update

As we get close to the end of the year and think about all that has transpired this year I don't know how we could be more blessed. We have had the privilege of watching the Great Physician perform multiple miracles in Carissa. Because of His mercy and faithfulness we have been able to experience many things that we were told multiple times that we would never experience with Carissa. We have been blessed with a now 14 year old, Colton, who has matured leaps and bounds and is an incredible help with both younger siblings. I cannot imagine anyone transitioning better from being an only child for almost 12 years to having not one but two younger siblings in an 18 month period. We've also been blessed with Luke who is the most hustling 2 year old I've ever seen and can repeat complex actions after seeing it done only once. Don't ask him to tell you how because he is not into talking at all.

I've mentioned it before, but you can go back and read our updates forward or reverse and see an amazing pattern of God answering specific requests for Carissa shortly after we had asked y'all to join us in praying about them. We got to see Carissa actually be born alive on April 17th and make it from the operating room to Level 3 NICU. We got to see her get off the breathing tube and onto the CPAP (remember her Snuffalufugus impersonation!). We got to see her move onto a nasal cannula. We go to see her move to Level 2 NICU. We got to take our precious little baby home on June 3rd, 5 days before her original due date. We got to watch her get her last blood transfusion June 25th. We got to remove her nasal cannula for good on July 31st. We got to watch as her cbc's starting showing that she was not only slowing down on destroying her blood cells but that she was actually producing and maintaining her blood cells. We got to see her get strong enough to stay awake for long periods and interact with us. I will never forget the first time she was able to push up on her arms and lift her head off her bed to look at me as I was trying to sing her to sleep.

I am going to get in trouble with some of you for this, but trust me when I say we didn't know if this could happen until the day before it did due to Carissa and Luke being sick. On the Sunday before Thanksgiving we got to stand before our church as we dedicated Luke and Carissa to the Lord. Carissa just sat sweetly in my and then Pamela's arms, and Luke put on a show for all to see. It was almost as good as that Ray Stevens song about the squirrel getting loose in the church. Here is a picture of Carissa in her dress that day.


We got to take our first trip out of town with Carissa at Thanksgiving where she was able to go see both sets of grandparents. We got to take a Christmas picture of our three kids together.



We have certainly had challenges. We are hopefully on the tail-end of a third cold with Carissa and Luke. With Carissa's history of breathing challenges those are not fun at all because they hit her very hard. If we seem pretty recluse please understand that we are just trying to protect Carissa from catching anything. We certainly hope to ease up on that sometime in the spring after the flu and cold season. Carissa still does not sleep for long periods and that makes for some very challenging times for Pamela. Carissa still often has several appointments a month down at Texas Childrens Hospital and those usually entail drawing blood and other tests or x-rays that are hard on both her and Mom.

We are looking very forward to the next few days and getting to celebrate the birth of our Saviour and enjoy some great family times. It has been quite a year for us and we are thankful both for the hundreds of you that have let us know that you are praying for us as well as the hundreds of you that have been praying that we haven't even met or heard from. We hope you have been blessed to see your prayers answered in Carissa's life. If you have not met Carissa in person we certainly hope to have the opportunity to introduce you to our little blessing that has some of the biggest and brightest blue eyes you will ever see.

We still shamelessly ask for your prayers for Carissa. We have more tests to be done to try to see if there are issues or challenges that we can head off or know to deal with.

• Please thank God for His amazing actions in Carissa's life
• Please pray that Carissa will continue to grow, strengthen, and develop in accordance with what is expected in relation to her original due date
• Please pray that recent tests and a couple yet to come will show no signs of alarm and that Carissa's doctors will grow confident enough in her condition to declare her well
• Please pray for the blood draw to come and the eye test to come where Carissa's eyes will be dilated that her pain or discomfort will be minimal
• Please give credit to our Heavenly Father when you have the opportunity to mention Carissa's story

All I know to say here is to thank you once again for your faithful prayers for Carissa. We hope to get the chance to thank each one of you in person for your prayers and we pray that you feel as blessed as we do during this Christmas season.

Merry Christmas!

Terry

10/20 update

You always hear you should treat your children the same. I am not convinced we really live by this principle. If Luke drops his pacifier we pick it up, dust off most of the larger things hanging off of it if we have time, and then hand it back to him. If Carissa drops her pacifier we pick it up, go wash our hands, wash the pacifier, disinfect the pacifier, throw away the pacifier, open up a new pacifier from a sterile package, disinfect the new pacifier, and then reluctantly hand it back to Carissa wondering if we have been careful enough. You don't even want to know the comparison to poor Colton (although we did proudly watch him haul in a 30+ yard touchdown catch tonight at his game!).


Luke has the chore of feeding the 1300 pound longhorn bull living in our back pasture. After all, he turned 2 last Friday so it's about time he started pulling his weight around here. You can't tell it from this angle but the bulls horns are more than 50" wide.

Carissa has everything done for her and gets dressed like this while we are preparing meals to protect her further.

If you ask my brother he will reluctantly admit to you that he was treated much better than I was growing up (I'm pretty sure that's the way he tells it) so either we are not the only family guilty of this or it is an inherited trait that I am passing down. By the way, Pamela generally does a great job of dressing the kids for UT gamedays as you see from the pictures. She does this voluntarily...of course on Friday nights I remove all clothing not burnt orange or having a longhorn from our home until Sunday morning.

Carissa goes in for another ultrasound Thursday to make sure everything seems ok with her spleen and liver since they still seem enlarged. She will also have additional blood work done at that time because there seems to be growing concern about her thyroid function. We have made it through a couple of cold/upper respiratory scary times with Carissa over the last couple of weeks. Those are never fun with any young child and seem even more trying with Carissa's background of slow lung development. We had a couple of people come out a few days ago to measure Carissa's developmental progress and she seems to track pretty well if you chart her versus her due date, but she is behind in most or all areas if you measure versus her actual birthday. That is to be expected at this point. We are thrilled that she seems mostly on track when compared to her full term date and see that as miraculous considering all she went through those first few weeks. She is scheduled to be reevaluated monthly for the next few months to help us make sure that she keeps developing like she should.

• Please thank God for His amazing healing touch on Carissa's life. She turned 6 months old last Saturday! We know we are amazingly blessed to even be saying that.
• Please pray that Carissa's thyroid will function properly as well as her other glands that could be a challenge right now and are so important for her continued development.
• Please pray that Carissa's liver and spleen are also functioning properly and that there is no issue with them being enlarged.
• Please pray that Carissa continues to make and maintain normal levels on her blood components. Praise God she has been considered to be normal in this area the last two visits.
• Please pray that God continue to be given the glory for Carissa's amazing progress and please make sure to give Him credit when you share her story.

We are humbled to have the opportunity several times a week to give an account of God's amazing actions in Carissa's life and of our thankfulness of hundreds of people offering up prayers for her. Please keep remembering her in your prayers.

Yours and His,

Terry

9/25 update

Wanted to touch base with y'all to let you know of a little news but mostly to request your prayers for our family's health. Luke had a little bit of a cold a couple of days but seems to have mostly gotten over that. Unfortunately Pamela has caught it big-time and Carissa is getting it a little and that is what concerns us.

We did hear back that Carissa needs to have her thyroid evaluated because some of the tests the genetics group ran says it is low so we are waiting to hear from the endocrinologist to set up an appointment. We did find out this week that when you plot her growth on the timeline of her due date instead of her actually birth date that she is on the 25th percentile curve and very proportional. It certainly makes sense to us to look at her growth that way. Maybe we should ask her a couple of questions to let y'all see her responsiveness. For comparison look at the picture of the 2 day old Carissa on the front page of the blog at http://www.theshufflersstory.blogspot.com/. It is amazing to think of that 2 day old on the ventilator with lungs that won't fill and without the ability to maintain most of her blood components has been healed and has grown to the baby she is now. She has grown 7 inches and over 250% weight-wise when you count the weight she was after she lost most of the fluid from the hydrops. Anyway...back to the interview.

Carissa, can you show them what a 5 month old baby who seems to be starting to teethe some would look like?

That's good. That's an impressive drool trail to sell your point.

Now show them a trick. Can you roll your tongue up in a ball for them?

Show them that wrinkled-nose smile that melts Daddy's heart when he gets home from work.

You wouldn't use that to get your way in the future would you?

You're right and I didn't think so...and I am sorry if that insulted your integrity.

• Please thank God for the miraculous healing He has provided for Carissa.
• Please pray that Carissa will be able to avoid or get through this illness with little effect.
• Please pray that Pamela will be able to get the rest she needs and get over the cold.
• Please pray that Carissa's thyroid will function properly and lead to normal physical and mental development.
• Please pray that our God, the Great Physician, keeps getting the glory for Carissa's healing.

Thank y'all for your continued prayers. We are so appreciative of your faithfulness to pray for Carissa and for celebrating her amazing progress with us.

Yours and His,

Terry

9/8 update

Let's get right to the point. Carissa had 2 appointments today, one with the pulmonologist and one with the hematologist. You may remember way back early on in these updates that it is a really good thing from the patient's perspective when they bore a doctor and I think Carissa is starting to bore some doctors. For the first time ever Carissa's blood count numbers are all in the normal range! I know many of y'all have been praying for this day alongside us for months and I hope you all feel at least a fraction of the joy that we do.

Dr. Mahoney, Carissa's hematologist who has been incredible as her primary physician after she was discharged from the hospital, is even saying that he cannot really be her primary physician now because she appears to not have any blood issues. There are some tests that Dr. Mahoney and the geneticist sent off today that will take a while to come back, but those seem to mostly be "let's make sure she doesn't have this" instead of really searching for something. We have a consultation on 9/22 to find out if the muscle tone really is something to be concerned about and worked on or not. I already have Carissa doing P90X and some water aerobics so I think she'll be good by then.

News like this sure helps put piddling problems into perspective. It also helps us be so thankful for normal...just plain ole normal. It brings into perspective what an incredible promise God made when He said through Paul in 2 Timothy that through His Word we would be adequate, equipped for every good work. How amazing is it that God's Word can make us adequate to perform most...make that every...good work. I never knew normal and adequate could be such incredible adjectives to strive for.

• Please thank God for His incredible healing of Carissa that draws closer to completion every day.
• Please continue to pray for Carissa's development and for her protection from the fall and winter illnesses that could still prove very challenging for her.
• Please thank God that He hears our prayers (just re-read some of the prayer requests portions of old updates to see how directly He answers specific prayers)
• Please pray that Carissa's story will be used to encourage believers, to help people come to a saving knowledge of Jesus Christ, and to most of all bring glory to God, and please help make that happen by giving Him credit when you have opportunities to tell Carissa's story.

Thank y'all so much for your prayers as well as for letting us know you're praying and spreading Carissa's story. I don't know how we will ever be able to express our appreciation enough.

Yours and His,

Terry

PS I'll try to send soon a couple of photos of the almost normal Carissa. I'm not sure if she is absolutely declared normal that many of you will believe that she is really my daughter but I'll deliver the message regardless.

9/1 update

Who couldn't use a helper like this? Luke is very aware of the importance of a good pacifier and is great at giving Carissa hers...when he isn't stealing it for himself.

This is Carissa Monday night having a little floor time after an evening nap. I would be happy too if I had just had an evening nap.

We had a doctor's appointment Monday with the Genetics department. Nothing of huge consequence was found out but we did learn that Carissa is behind in muscle tone development and is basically below all the trend lines (even the 5% one) on size. The doctor said that she likely is also behind in other areas including her immune system and that we should proceed with a lot of caution for a while about taking her into public and exposing her to other people, especially other children. That was a little...ok, a lot...disappointing since we had taken her to church for the first time Sunday and had planned on taking her to Patillo this weekend for the family reunion and Uncle Junior and Aunt Fran's 50th Anniversary Celebration. Sometimes God gives us these reminders that we are on His schedule and not the reverse. We were just talking Sunday during Bible study about Isaiah 55: 8 that says:"For My thoughts are not your thoughts, Nor are your ways My ways," declares the LORD.We talked about how that is pretty cool to quote but not quite as cool when God has to remind us that even though we are created in His image that we are not Him and don't always know best and darn sure don't always do best. How cool is it that when we come face to face with the fact that our righteousness is as filthy rags and all our accomplishments are but dung (Paul's words, not mine) that we can rest on the redemptive sacrifice of Jesus that brings us back into a relationship with the Almighty God if we just accept it? Real cool!
We have another hematologist appointment on Thursday and then a follow up visit with the pulmonologist on Tuesday. We are praying for a great visit at the hematologist on Thursday even though they will be taking more blood than usual because they will be sending it off for tests at Stanford Medical (hopefully more reliable than Stanford Financial!), and then an uneventful pulmonologist appointment next Tuesday, and then perhaps a break for a couple of weeks from doctor visits. Please join us in that prayer.

• Please thank God for His amazing healing of Carissa, for the amazing progress He has brought her through, and for the reminder this week that our hope is in Him, not just time or doctor's abilities.



• Please pray that Carissa will continue to grow and mature and that her muscle tone, immune system, and other development will continue to progress and to even start catching up with her age.



• Please pray that Carissa will continue to produce and manage all the different blood componenets and that that will be revealed in the cbc on Thursday.



• Please pray that God will continue to get the glory as Carissa's miraculous story is told, and please take advantage of opportunities to do that. We hope every time her story is told that God's grace and mercy and healing power are presented as the framework of her odds-defying progress.

Thank you for praying and please take the challenge of this update as a reminder to pray daily for Carissa,

Terry

8/15 update

Just a quick note to let y'all know that Carissa's cbc yesterday showed some great things. Her hemaglobin had actually risen slightly from her test 3 weeks ago and her platelets continued to rise and are actually in a normal range for the first time ever. Her other blood components were in pretty good shape also. We go back in 2 1/2 weeks for another cbc as well as having more blood drawn to try to test and see what the root cause of her blood issues has been. There have been times in the past when improvements were found to be short term so please keep praying for Carissa that she will continue to improve.

• Please thank God for the amazing healing Carissa has undergone since her birth. She will be 4 months old Monday!
• Please continue to pray that Carissa will be able to continue to produce and maintain all the different blood components.
• Please pray that Carissa will continue to be protected from illness as she matures and we start taking her into public some.
• Please pray that our Almighty God continue to get the glory for Carissa's healing.

Thank y'all for your prayers and please keep praying!

Yours and His,

Terry

7/31 BIG update

Quick interview with Carissa:

Well, good afternoon, Carissa. Looks like you may have just had a bath since you don't have your nasal cannula in.

I actually have some pretty good news I would like to tell you. Are you ready to hear it?

I got a call this afternoon from your doctor's office and you do not have to wear the nasal cannula because you no longer need supplemental oxygen. You also do not have to listen to that annoying pulse-ox monitor and its loud beeping. How does that all make you feel?

Me too!

Praise God for the great news today! Thank you for each of your prayers and please keep praying. We have another visit to the hematologist two weeks from today. We have never gone 3 weeks between visits before.

The news about the oxygen was a huge high for us and is especially timely because we are actually packing to move and moving over the next few days. God's timing is perfect, as usual. Our new address is:
19403 Sapphire Circle
Magnolia, TX 77355

• Please thank God for His healing of Carissa. Take a look back at some of the updates if you want to be reminded of how amazing and how powerful God is.


• Please pray that Carissa will continue to improve on her breathing and lung development even beyond where she is today and that she will be protected from illness.


• Please pray that Carissa will continue improving on holding on to her blood components and that she will also keep manufacturing all the different components.


• Please pray that the Great Physician keeps getting the glory for Carissa's progress and please help make that happen.

Thanks again for all your prayers and please keep lifting Carissa up to our Heavenly Abba Father.

Psalm 103 says it best. Please read it all and join us in acknowledging the Lord for who He is:

1Bless the LORD, O my soul, And all that is within me, bless His holy name. 2Bless the LORD, O my soul, And forget none of His benefits; 3Who pardons all your iniquities, Who heals all your diseases; 4Who redeems your life from the pit, Who crowns you with lovingkindness and compassion; 5Who satisfies your years with good things, So that your youth is renewed like the eagle. 6The LORD performs righteous deeds And judgments for all who are oppressed. 7He made known His ways to Moses, His acts to the sons of Israel. 8The LORD is compassionate and gracious, Slow to anger and abounding in lovingkindness. 9He will not always strive with us, Nor will He keep His anger forever. 10He has not dealt with us according to our sins, Nor rewarded us according to our iniquities. 11For as high as the heavens are above the earth, So great is His lovingkindness toward those who fear Him. 12As far as the east is from the west, So far has He removed our transgressions from us. 13Just as a father has compassion on his children, So the LORD has compassion on those who fear Him. 14For He Himself knows our frame; He is mindful that we are but dust. 15As for man, his days are like grass; As a flower of the field, so he flourishes. 16When the wind has passed over it, it is no more, And its place acknowledges it no longer. 17But the lovingkindness of the LORD is from everlasting to everlasting on those who fear Him, And His righteousness to children's children, 18To those who keep His covenant And remember His precepts to do them. 19The LORD has established His throne in the heavens, And His sovereignty rules over all. 20Bless the LORD, you His angels, Mighty in strength, who perform His word, Obeying the voice of His word! 21Bless the LORD, all you His hosts, You who serve Him, doing His will. 22Bless the LORD, all you works of His, In all places of His dominion; Bless the LORD, O my soul!

Yours and His,

Terry

7/28 almost update

You ever study for a test, think you are ready, and look forward to finding out what you made only to learn that the teacher won't grade the paper for a couple of millenia...I mean days? We are in the middle of the BIG TEST, the FREE MY PEOPLE (daughter)TEST, the Testimus Maximus, the Test to end all Tests, and we just found out that we will be called in a couple of days with the results? I bet Yao Ming's daughter would find out the same day. I bet Lance Armstrong's daughter would find out the same day.

Carissa's pulmonologist just came in and delivered that news. I am pretty sure she then told us that she anticipates that she will do fine and will be able to get off the oxygen. I could not hear for sure because of all the crying. I hope Carissa never finds out that I cried at her appointment.

On the way to the hospital this morning we were thanking God for His perfect timing...I just wished Texas Children's got a copy of His schedule. Just kidding. We know it is in His hands, whatever the results and whatever the time.

I'll pass along the results shortly after we get them. Thanks in advance for your continued prayers.

Yours and His,
Terry

7/24 update

Woohoo and Hallelujah! It has been 4 weeks and 1 day since Carissa's last transfusion and we are going to be able to keep that clock rolling a while longer. Carissa's rbc and hemoglobin was lower than 2 weeks ago but not in a range that needed a transfusion. Her retic count also shows that she is producing rbc's. Her platelet count is still slowly but surely rising as it has been for several weeks now, and is almost to a normal level.

We ran some errands early afternoon after we left the hospital and when we got home I saw as I brought Carissa in that her oxygen supply was showing no pressure on the meter. We have gotten used to spot checking her oxygen on the pulse-ox monitor because the sound is so annoying and it had been off for more than a couple of hours. I turned the monitor back on instead of just turning the oxygen back on and the reading immediately showed a very good pulse rate and a oxygen saturation level of 98. I have actually just left the oxygen off for the last couple of hours and the readings are generally very good, never dipping close to 90, known as the "desat" range. What a great observation to see those ranges even though Carissa has not had any oxygen assisstance in a while.

On Wednesday we also left the oxygen off for a while after we bathed Carissa. We put the cheek pads on her and taped on the nasal cannula but just left it unhooked to the oxygen and she stayed in a good range until I was too tired to watch the monitor and hooked her back up to the oxygen tank.

We are so thankful for these times that display how far Carissa's lungs and breathing have developed and are humbled to see the results of your and our prayers and the actions of the Great Physician. Next Tuesday is the pulmanologist appointment and the OCRG test to see if Carissa will be able to leave the oxygen support behind her. We kind of feel like you do when you have studied really well for a test, are pretty sure you are ready for the test, but still are a little anxious waiting for the test to see if you really studied the right thing.

Here is a picture I took a few minutes ago as Carissa drifted off for a nap showing her oxygen saturation at 98 and her pulse rate at 133...both very good.

Here is a picture showing the familial resemblance of Colton to Carissa and his regression one night this week. All that talk of recent maturity down the drain. Just kidding, really. He actually gave up the pacifier last summer before he started junior high school.


Can't you just see this picture showing up at Colt's 18th birthday party, his rehearsal dinner, his first child's birth announcement, an ad run in the local paper announcing he turns 40 that day...feel free to find uses on your own.

• Please thank God for all of Carissa's progress and His amazing mercy and grace that He has shown her and us.
• Please pray that Carissa's breathing and lung development continue and that she is able to get off her oxygen support after her test next Tuesday.
• Please pray that Carissa's slowing trend of chewing through her rbc's continue, that the reticulocytes continue to form and go on to develop into mature rbc's, that her platelet count continues to rise and that she is able to produce and maintain all her blood components at healthy levels.
• Please pray that our Almighty God continue to receive the glory for Carissa's healing and please help us in acknowledging that.

Thank y'all so much for your continued prayers and please keep them up. Wayne Watson's song "When God's People Pray" has a couple of lines that says when God's people pray and take the pains of earth to the doors of heaven that hope is reborn. Thanks for taking Carissa's pains to the doors of heaven.

Yours and His

Terry

7/18 update

I will just admit it up front...I am a slacker punk. I am way behind on giving an update after last week's visit to the hematologist which was the first blood count done after the rbc transfusion on June 25.


The blood count showed a hemaglobin and rbc count in good ranges, but at a point where they had no doubt dropped from levels soon after the transfusion. The platelet count was up over 100k on their own for the first time. That is still a little low but they have been trending up for several weeks and the low platelet issue, thrombocytepenia, seems to be resolving. The neutrophil count is also still in a good range and looks like that problem is in the past as well. If you have been reading these from the beginning you may remember Dr. Johnson who was Pamela's doctor starting on the night of 4/8 when she checked into St. Lukes. He checked on us this week just to see how we, and specifically Carissa, are doing. I told him I hope I never have to spell thrombocytopenia or neutropenia again-openia...actually I left the suffix humor off for Dr. Johnson.


Carissa has some really big appointments over the next 10 days and we request your continued prayers for her. We go back to the hematologist Friday and then go to the pulmanologist for the OCRG test (Our Carissa Respirates Good is what I think that stands for) on 7/28. We have been counting the days until the 28th for quite a while and are honestly both hopeful and anxious about that day. The timing is a little tricky because if trends hold Carissa may be getting lower on rbc's by Friday's appointment but maybe not low enough for a transfusion. The OCRG test on the following Tuesday is all about her oxygen saturation so that will be a challenge to do well and get off oxygen if her rbc and hemaglobin counts are not high. We really hope that Carissa will be able to do well and be able to be off oxygen support for the first time except for a few hours while she was in the NICU. Conventional wisdom says that this could be lined up for a perfect storm where Carissa's counts aren't low enough for a transfusion, then her OCRG test does not go well due to low rbc's, and then she needs another transfusion shortly after the OCRG test. We thank God that He is not restrained to operating in the realm of conventional wisdom! Carissa has had great physicians but she is ultimately in the hands of the Great Physician!

• Please thank God for Carissa's progress and for her 6 1/2 weeks home when she was once thought to never leave the delivery room, let alone get to leave the hospital!


• Please thank God for Carissa's steady improvement in platelet and neutrophil counts and pray that she will improve on producing and maintaining her red blood cells.


• Please pray that Carissa's lungs and breathing will continue to develop and mature and that she will do well on the OCRG test on the 28th and get to get off oxygen support for the first time ever other than for a few hours in the NICU.


• Please pray that God will continue to get the credit for Carissa's progress.

Please continue to pray regularly for Carissa. She still has several areas that need your intercession and God's intervention.

Yours and His,

Terry

7/6 update

Little Big Bro joined Big Big Bro in holding Carissa tonight. Colton has been doing amazing at helping out with both younger siblings and has allowed Pamela to take a few minutes to get things done by watching Carissa pretty often. Tonight Luke plopped down beside Pamela and made it clear to her that he was there to hold Carissa. He was quite proud of himself after that.

Last week was the first week Carissa had ever had without any sort of doctor or hospital visit. We pray that is the first of many. We got in a new batch of pulse-ox sensors early last week and promptly went through all 4 of them in no time with the last one going bad just after 5 last Thursday as everyone closed down for the holiday weekend. We have either been living on faith or foolishness for the last few days because Carissa has not been on the monitor since that sensor went bad last Thursday. We ordered more today and will likely get them Wednesday. I don't miss that annoying beeping at any little move by Carissa even one bit.

We certainly hope and pray that the last few days are just a foreshadowing of late this month when we hope Carissa will be found to not need oxygen anymore. We would like for the oxygen need to be behind us.

We do have a hematology appointment Friday which will be the first cbc since her transfusion on 6/25. Depending on what is found we will either have a transfusion or get another appointment set for one or two weeks later.

• Please continue to thank God for His amazing touch on Carissa's life and her odds-defying progress.
• Please pray that Carissa is able to keep making and properly managing all her different blood components and that the cbc shows progress.
• Please pray that Carissa's lungs and breathing continues develop to the point that she will not need to stay on oxygen when she is retested at the end of the month.
• Please pray that Carissa keeps getting stronger and is better able to handle all of her eating via nursing.
• Please pray that our Almighty God keeps getting the glory and praise for Carissa's healing and that we all take advantage of opportunities to help that happen.

Thank all of y'all so much for your prayers and please keep praying for Carissa daily.

Carissa's issues and progress have given us many opportunities to talk about the faithfulness of God and of the power of prayer. It reminds me of a verse we have been focusing on at our church during Bible study on Sunday mornings as we discuss some basics of our faith. 1 Peter 3: 15 says "but sanctify Christ as Lord in your hearts, always being ready to make a defense to everyone who asks you to give an account for the hope that is in you, yet with gentleness and reverence." It's a really good idea to know what you believe and why you believe so you can be ready to defend your reasons, and reminding yourself why you believe what you do is a really good exercise in strengthening your faith.

Yours and His,

Terry

6/29 Update

This is actually a picture from a couple of weeks ago during bath prep time but I thought it was cute enough to send out. The last week has been another one on the Carissa coaster with mostly high points but one or two of those plummeting falls that take your breath away. After getting over the cold of the previous weekend Carissa had been doing pretty well. Oxygen saturation levels were so steady and high I was pretty convinced her hemoglobin and rbc count would be in good shape after the decline had slowed the previous week.

Thursday started early as we had to wake Carissa up at 3:15 to feed her in order to allow a 4 hour gap between eating and her ultrasound that was to take a look at her liver and spleen. The actual ultrasound went better than we thought it would with the complaints from the Carissa complaint department staying fairly mild. We then went on the waiting in the hematology department where they ultimately drew more blood than usual to run a few more tests. It took a couple of sticks to get a needle in to take the blood. The main downhill on the Carissa coaster came a few minutes later when the hemoglobin and rbc count came back significantly lower than the previous week and signaled a transfusion need. Most of Carissa's other blood count numbers were in pretty good shape with platelets rising, the neutrophils rising, and the retic count soaring. We had hoped some of those retic that were up but not as dramatically the previous week would mature to regular rbc's but that had not happened.

There was also much talk of future testing for Carissa with the hematologist. The main one that we want to avoid if possible is the bone marrow test where Carissa would have to be sedated in order to perform it. With her history there is a likelihood that she would have to be intubated before being sedated to make sure her breathing would be ok and there is always a concern that getting her off intubation or bringing her out of sedation will be difficult. I am sure you can understand why we don't want to go there if it can be avoided.

We found out about the need for the transfusion by 10:30 am or so. A little while later we had to watch Carissa endure 3 more nurses and then lab techs try 5 different sticks in order to insert the IV. I think they understood a little more why we didn't want to put her through that the week before if it was not absolutely necessary. The Carissa Complaint Department was loud and clear for about the 45 minutes they looked and poked and stuck her and she looked exhausted and very pale when that ordeal ended. We finally got our room for the transfusion about 4:45 but the blood was not ready to start the transfusion until a few minutes later. The transfusion itself takes 3 hours so after 2 1/2 hours we are thinking we are on the home stretch when we found out that after the transfusion they were going to take another few minutes to flush the line and then observe her so we were not able to leave until after 9:00. That was one long trying day.

Carissa seemed to recover from the long day pretty quickly. I think it took Pamela and I a little longer than her. Because of the transfusion we get to have a week without a scheduled appointment so we are looking forward to that. Even after the trying day we are so thankful to be having these issues to deal with as opposed to Carissa still being in the hospital or sticking to the dreadful original prognosis. We even went a week without any other member of the family needing a hospital visit so we've got that going for us also. As you look around the Hematology/Oncology Department you realize that we don't have things nearly as challenging as many of the families there and you just want to see God move in their lives like we have felt Him move in ours. No wonder the psalmist said in Psalm 91 "I will say to the LORD, "My refuge and my fortress, My God, in whom I trust!"

• Please thank God for Carissa's progress. She has been home 4 weeks this Wednesday and a month this Friday!
• Please pray that Carissa will continue to produce the blood components that she needs, that the reticulocytes will mature into mature red blood cells, that her neutrophil and platelet counts will continue to improve, and that she will be able to maintain her rbc and hemoglobin count after this last transfusion.
• Please pray for Carissa's lungs and breathing to continue to develop and that she will be able to remove oxygen support after her 7/28 OCRG test and Pulmonologist appointment.
• Please pray that our Heavenly Father keeps getting the glory and praise for Carissa's improvement and that He is glorified even through the rough days like last Thursday.

Thanks so much for all your prayers. There is not usually a lot of changes on a daily basis so I don't update as often but Carissa still desperately needs your prayers regularly as well as a regular touch from the Great Physician.

Yours and His,

Terry

6/22 update

We have hit some milestones since the last update. Carissa turned 2 months old on 6/17 and 9 weeks old this past Friday. We had another followup to the hematologist on Friday. The visit started with Pamela and I almost getting reported to CPS...only partially kidding...as I noticed the lab technicians getting ready to attempt to insert an IV into Carissa. If you know her history of having difficulties getting IV's you would understand our concern, especially since we had not even done the blood work to do the CBC yet. As I nicely stated that our doctor had wanted to do the CBC before deciding upon a transfusion the tech looked at no one in particular and said that she knew that they should have talked with us first. They called over a hematology nurse who showed us the chart on Carissa's last 4 CBC's and how it was a pretty linear graph indicating that she would be below the threshold and needing a transfusion. I told her I understood the graph but still prefered to see if she really needed to get the IV and they started treating us like people out to second guess them and doubt their ability to insert an IV. They sent us to a different tech who told us we were foolish, that they were the best at inserting an IV, and that we just caused ourselves to have to get back in line when the blood test comes back showing Carissa needing a transfusion.

Somehow God enabled me to keep my mouth shut while in the presence of those openly questioning our judgement and parental ability...and He enabled it to keep it shut and not rush the lab with the news that Carissa's blood count had fallen in some areas but remained just above the threshold for the transfusion. Halelujah! The Retic count was also up 400% from the last test, displaying that her bone marrow is kicking into gear and trying to replace her rbc's and get her hemoglobin count up. Reticulocytes are new, immature red blood cells just produced by the marrow. The white cell count, specifically the neutrophils that have been a challenge, were also in a good area.

Quick update on Colton just to let y'all know that he has healed amazingly. The few people that saw him within the first few days of his accident will tell you that the picture sent in the update that showed his neck did not really show how badly he was banged/scratched up. It is absolutely amazing to now have to really look closely to see any evidence at all of the accident ever happening. Praise God for healing Colt and thank y'all for your prayers for him.

Last Friday's visit with the hematologist was not all rainbows and butterflies as he reminded us of the fact of Carissa's spleen and liver still not returning to normal size and of other issues that could require large blood samples for testing as well as painful procedures for other testing. We are supposed to have an appointment this week for an ultrasound to get an accurate size of both the spleen and liver for future reference to see how they are changing. We go back on Friday again for another cbc.

The last three days have been a challenge with Carissa's first sickness with her appearing to have some sort of cold-like illness. That has caused all sorts of challenges with the basics of eating and sleeping and we are so grateful that Carissa seems to be much improved this evening. She has just not felt well over the past 60 hours or so and was having to be held and comforted the vast majority of that time just to fend off continual crying. She has been asleep now for 30 minutes, which is the longest straight sleep period of the last 3 days.

• Please thank God for Carissa's progress and for her rbc and hemoglobin staying above the transfusion threshold.
• Please pray that the positive trends in Carissa's blood component production and management to continue.
• Please pray that Carissa will continue to grow and strengthen, that her lungs and breathing will continue to mature, and that she will fully heal from the congestion/cold she has been experiencing.
• Please pray that Carissa's amazing progress will continue and that she will be able to avoid the challenges of invasive testing and large blood tests.
• Please pray that the one, true God will continue to receive glory for Carissa's healing and for us to be able to graciously and humbly give the glory to Him when we visit the lab this week and see the technicians that didn't agree with us.

Know that as I share some of the challenges we are dealing with that we are so incredibly thankful to be able to take on those challenges, knowing the grace of God will always be sufficient for us. All it takes is thinking back to just a few weeks ago and how we were longing to have Carissa home, and we are happy to be taking on these challenges. The end of the book of Jude reminds us how fortunate we are to serve a God who can present us as faultness because of the gift of eternal life through Christ, "Now to Him who is able to keep you from stumbling, and to make you stand in the presence of His glory blameless with great joy, to the only God our Savior, through Jesus Christ our Lord, be glory, majesty, dominion and authority, before all time and now and forever. Amen."

Thank y'all so much for your continued prayers. I don't doubt that Carissa's quick recovery from the cold-like illness is directly to many of y'all to praying for her protection and healing. It makes no sense for one having been through what she has been through to be able to get past this that with as little as a struggle as she has. Please keep lifting Carissa up even though you are not getting daily reminders/updates from me to do so.

Yours and His,

Terry

6/12 update

We had another followup visit to the hematologist today and Carissa's platelet count has been basically unchanged for the last week. That is a huge step and we are very thankful for that. Her hemoglobin is down some and will be a concern if it does not level off or improve. The hematologist has compared numbers since the last rbc transfusion almost 3 weeks ago and set an appointment for us for next Friday to do another blood count and potentially a transfusion. Her hemoglobin is very important for her breathing to be able to improve because that is the blood component that carries the oxygen. Carissa's neotrophil count has also been in an acceptable range over the last week so we are very thankful for that as well.

Carissa seems to be doing very well at home. She has a great appetite and, as mentioned before, has more and longer awake periods now. Thankfully, Carissa travels better than either Colton or Luke did as an infant, which has made the trips back and forth from the doctor visits go pretty well considering how far we live from the Medical Center.

• Please thank God for Carissa's amazing and continued progress, especially her platelet count leveling off over the last week. We celebrate her eighth week with us today.
• Please pray that Carissa will continue to improve on her platelet count and that her hemoglobin will start trending the right direction.
• Please pray that Carissa's lungs and breathing will continue to develop and that she moves toward not needing oxygen support.
• Please pray that Carissa will continue to improve at home and that she will have no long term effects from any of the issues that she has dealt with before and after birth.
• Please pray that our Almighty God continue to receive praise for Carissa's healing and please take opportunities to give Him credit if you happen to tell Carissa's story.

Colton continues to improve after his 4-wheeler accident on Tuesday. He is still very sore but the abrasions are actually healing well and look much better for such a short period.

There have been times since April 8th when this all started with Pamela going from specialist to specialist and finally being checked into St. Luke's in the Medical Center that night that we have wondered where we would get the strength to just get done what we need to get done. How great is it that we have a savior that tells us in Matthew 11: 28-29 "Come to Me, all you who are weary and burdened, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls."

Thanks so much for praying for Carissa and please keep lifting her up in intercession.

Yours and His,

Terry

6/10 update...a new twist to an old character

We have had some interesting occurences since our last update. On Monday we celebrated Carissa's original due date with a pediatrician visit that showed that she had grown to 7# 4 oz., an increase of 8+ ounces in less than 5 days home. It is evident that Carissa is growing and gaining strength and endurance. She is alert more, just generally wiggles around more, and definitely voices her displeasure when something does not suit her now.



Tuesday we went for a followup to the hematologist where we found out that Carissa's platelets had barely dropped from her Friday visit so we are very thankful for that. We go back this Friday to see where they are. They keep thinking we will need a transfusion each time we go in so we are very thankful that the decrease in the platelet count has slowed considerably.

Tuesday afternoon brought another challenge when we got a call from Colton telling us that he had just had a wreck on a 4-wheeler, running into a fence and getting knocked off by the wire hitting his neck. Colt and I got to spend until 3:30 in the morning in the ER of Memorial Hermann Hospital in the Medical Center...after his exciting LifeFlight helicopter trip. When you consider what happened it is an absolute miracle that Colton was able to be discharged today after around 24 hours in the hospital with just soreness and pretty minor scrapes when you consider that his neck took the entire force of him hitting the fence. We could have been looking at extreme injuries or worse if not for the protection of our Almighty God.



Do you get the feeling that the guardian angels for the Shuffler family are some of the best trained and most alert of all the angelic force? We sure do. Please do not be alarmed if you see any of our children in the next few weeks thinking that we are torturing them or are about to mail them. We have just made the decision that it would probably be best to envelope them in bubblewrap for their safety and our peace of mind.


Today God just gave another pick-me-up right when I needed it during a frustrating and tiring time and allowed me to finish up something that had to be done in a time period that I should not have been able to meet. Since April 8th when Pamela checked into the hospital He has proven faithful to supply for every need over and over again. How can we not often be reminded of Philippians 4: 19 where Paul wrote "And my God shall supply all your needs according to His riches in Christ Jesus." How cool is it that it is all our needs and according to His riches. That is infinitely better than some, many, or even most of our needs according to our riches.

• Please thank God for His healing of Carissa and for His protection over Colton.


• Please pray that Carissa's blood components and management of them will continue to improve.


• Please pray that Carissa's growth and strengthening will soon translate into stronger lungs and an ability to breathe on her own.


• Please pray that Colton will not have any additional issues from the incident, that his swelling will diminish, and that he completely heals.


• Please pray that God continue to get the glory for Carissa's amazing improvement

Thanks so much for your prayers and please keep praying. As far as Carissa as come she still needs to make significant improvement in a couple of areas.

Terry

6/5 update

We made the first trip back to Texas Children's for an appointment with the hematologist today. Carissa's numbers were down some but she did not have to have either an rbc or a platelet transfusion. We go back Tuesday to make sure the platelet numbers don't drop to a dangerous level before that is realized. We are praying that Carissa's platelet numbers start to improve so that they don't have to consider doing rougher tests on her in a month or two.

It is a challenge coordinating an infant on oxygen and a pulse-ox meter at the house and especially when traveling to an appointment. What is great is that it is a much bigger blessing to be dealing with the tanks, tubes, and monitors since that means Carissa is home with us.

• Please thank God for Carissa's progress and for her not needing a transfusion today.
• Please pray that Carissa's body improves in manufacturing and coordinating all the different blood cells needed to function well, expecially platelets.
• Please pray that Carissa's lungs and breathing continue to mature and work toward not needing any oxygen support.
• Please thank God for her eating and sleeping going well and that Carissa will be able to nurse more and more.
• Please pray that God will get the glory for Carissa's progress and that people will realize His power to heal through her story.

It is funny how we now do not really know how much Carissa is eating since she is nursing some as well as bottle feeding at least to finish up at each feeding. Things you've taken for granted in the past now become a leap of faith as we transition from everything being precisely measured and timed to a little less regular and only partially measured so that you know a minimum of what was consumed but not the actual total. It has really reminded me that many normal things we do in life require faith but we develop faith in objects or schedules or systems or people and just trust them without thinking about it. Doesn't it make a lot of sense to have that attitude toward our Heavenly Father? At the start of Joshua, God told Joshua in chapter 1 "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." In the last chapter of Joshua, Joshua says "But if serving the LORD seems undesirable to you, then choose for yourselves this day whom you will serve, whether the gods your forefathers served beyond the River, or the gods of the Amorites, in whose land you are living. But as for me and my household, we will serve the LORD." May we respond the same.

Yours and His

Terry

6/4 update

What a first day at home! Carissa has had longer and more alert awake periods the past couple of days than ever before. A lot has been going on with getting prepared to leave the hospital and then coming home and she just appears to be getting a little strength also. She has nursed some and then taken bottles very well. Just early last week after a busy day Carissa would often need to be tube fed because she just couldn't quite muster the strength to take a bottle.

Colton has been a big help just fetching things and taking some time to play with Luke. Luke alternates between trying to be the most helpful 19 month old you have ever seen and wondering why he is having to share his Mommy with this newcomer.

Our first doctor visit is tomorrow to the hematologist where the possibility exists that we could have a lengthy visit if the blood count shows a need for a transfusion of platelets or rbc's. Our frequency of visits to the hematologist will be determined some tomorrow by what that cbc shows. We head to the first pediatrician visit early Monday morning.

We have been asked to make sure that we have no visitors with any sickness or even visitors with immediate family members that are sick so please forgive us if we just verify that if you want to come see us. I have also been given the job of Hand-washing Czar to make sure we try to stop anything from reaching Carissa. Until her blood situation stabilizes she is much more susceptible to things than even regular newborns, thus the extra precautions. We want everyone who wants to come see Carissa to be able to do that. We just have to take a few precautions.

• Please continue to thank God for Carissa's progress and for her being able to take the huge step of coming home.
• Please pray that she will be able to produce and regulate all the different blood components, and specifically that the platelet numbers will start improving.
• Please pray that Carissa's lung developement will continue and that she will be able to start working her way to room air.
• Please pray for Pamela and I as we develop schedules and try to get enough rest and that our family will be protected against illness that could be a problem for Carissa.
• Please pray that our Heavenly Father keeps getting the glory for Carissa's progress and for her continued healing.

Please keep praying for Carissa. Her progress is a testimony to the power of prayer to a hearing and merciful God.

It has been a while since I included a verse that Travis was welcomed with when he went home after his surgery last year: The Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with His love, He will rejoice over you with singing. Zephaniah 3:17

Yours and His,

Terry

6/3 update that was not supposed to happen

The day that we were told would never come just came and went. By the grace of God our little Carissa Faith came home today. We are so happy, so thrilled, so glad, so wondering if we are really ready, so tired of hearing the pulse-ox alarm go off. Did you know that the equipment they send you home with that likely costs thousands instead of tens of thousands like the hospital equipment doesn't read quite as purely and well as the hospital equipment and makes incredibly loud and annoying beeping sounds (sometimes at the slightest movement of Carissa's foot) that you couldn't possibly sleep through? We know that...and are so thankful to have the opportunity to be annoyed by it. Colton had a smile as wide as the Grand Canyon when we drove up and Luke immediately tried to help little sister out by putting her pacifier in her mouth.

I'll write more soon, but please celebrate with us as we thank the Almighty God for once again showering us with His blessings and giving us the desires of our hearts instead of what we deserve. Please pray for us in this transition time (of Carissa's current special care needs and for Luke dealing with the situation and in training him that he cannot bother tubing, monitors, can't throw things for Carissa to catch...)and please thank God that He is the God described in Ephesians 3: 20-21...you know you want to look it up if you don't know it, so look it up.

Yours and His,
Terry

6/1 update

Lots of things still need to happen but it looks like little Miss Carissa Faith may get to visit home for the first time later this week. Preparations started in earnest today with making sure she did well in a carseat. She seemed to think it was pretty cool, as you can see. She even spit up on it a little just to break it in. I think she learned that trick from Luke. I still have to teach her to yell at the vehicle in front of her if it doesn't go quickly enough when the light turns green. That is a little difficult to teach since she will be facing backwards but we will work on the general principle.

Carissa's hemoglobin was up a little today and her platelets have gone down since her transfusion Friday night but not as quickly as after the last platelet transfusion. She is eating very well these days and even had her feeding tube removed last night.

We received delivery of enough oxygen tonight at our house to keep a horse in an iron lung alive for quite a while. I think there is something wrong with it though because none of the balloons that we filled up floated up and our voices sounded the same whenever we breathed it in and talked with it. I'll ask about that tomorrow.

• Please thank God for Carissa's progress and that we are able to start making plans to bring her home.
• Please pray that Carissa will continue to improve and that preparations and that doctors' consultations will go well.
• Please pray that Carissa will continue to improve on producing and managing all the different blood components and that her lungs will continue to develop so that she can go on room air at her followup appointment in a few weeks.
• Please pray for Dante, who was across from Carissa in the level 3 NICU and for his mom, Misty, and that Pamela can run into her or touch base with her before we leave.
• Please pray that as people hear of Carissa's miraculous journey that our Almighty God will receive the glory.

Philippians 1: 9-11 And this I pray, that your love may abound still more and more in real knowledge and all discernment, so that you may approve the things that are excellent, in order to be sincere and blameless until the day of Christ; having been filled with the fruit of righteousness which comes through Jesus Christ, to the glory and praise of God.

Thanks for all your prayers and please keep interceding for Carissa. She still needs your prayers every day!

Yours and His

Terry

5/30 update

We received the results of the OCRG test today, or at least some test with many or at least some of those initials. Carissa will be on oxygen when she goes home. She will be on the least amount that you can have her on at home but it is still 2 1/2 to 5 times what she has been getting at the hospital. I may have to get the tools out and see what I can come up with to make sure she doesn't get too dependent on the additional oxygen. I may need to borrow a welding torch and one of those big ole wash tubs if somebody has an extra one.

Carissa has been on fortified Mom's milk since she transferred to Level 2 to up the caloric intake per volume to assist with weight gain. Today they decided to put her on straight Mom's milk but allow her to have more and see how she does with that. At 6 this evening she nursed for a few minutes and then took the entire bottle offered after that so she seems to be taking to it pretty well. We have noticed over the last couple of days that sometimes when she has finished a bottle she has seemed to want more and now she will be able to have more...except when she finishes the greater amount also. Maybe she can bribe one of the babies next to her for some of their milk. I guess we will now see if Dave's blood really is helping with Carissa's negotiating skills.

On weekends you have whichever neonatal doctor is on call for the weekend. That seems weird that they make calls/changes that the regular doctor didn't make yesterday. What is a little disconcerting is that Carissa had her normal Level 2 doctor on Friday, has the doctor on call this weekend, and then will have a new doctor on Monday due to the start of the month rotation. The nurse practioner remains the same so there is some continuity. It is a little nerve racking when you do not have anything close to a black and white diagnosis that your doctor is switching about the time they are talking about being able to go home. It took a few days to feel like the Level 2 doctor was up to speed on Carissa's history so hopefully that will not be the case this time. In the absence of a clear diagnosis it seems that the medical sciences become the medical arts...much more gray and hopefully skillful guessing than black and white and sure decisions. For example, we were told yesterday that Carissa's platelet count would need to be over 100 and holding, but today we were told that as long as the trend was for her to be able to go a week between transfusions that she would be able to go home. Sometimes the Carissa coaster has a little feel like Space Mountain at Disneyworld that is in the dark.

• Please thank God for Carissa continuing to eat well and for all her amazing progress.
• Please pray that the transition from May doctor to weekend call doctor to June doctor goes well and that instead of something getting lost in the transition maybe a new set of eyes will see a puzzle piece that has been eluding us so far.
• Please pray that Carissa will be able to produce and correctly regulate all the different blood components and that she would continue to eat well and keep growing in size and strength.
• Please continue to pray for Dante and his Mom, Misty, and for an opportunity for Pamela to at least touch base with her.
• Please pray that God will continue to get the glory in Carissa's amazing progress as she gets closer to a big step of going home.

Those of y'all that know me well know how much I love the outdoors and enjoying God's amazing creation. How cool will it be to be able to share that with our little Carissa for the first time? Real cool! John wrote of Jesus in his Gospel that "All things came into being by Him, and apart from Him nothing came into being that has come into being."

We sincerely thank each of you for praying for Carissa and ask you to please praying for her.

Yours and His,

Terry

5/29 update and mini interview

Another day, another round on the Carissa coaster. Carissa had her OCRG test this morning and we will get results next week about how she did. We did find out that her renal test yesterday came back as everything working like it should. What was really cool was when I got to the hospital today a few minutes before CPR started and Carissa was there taking her bottle from the nurse...WITHOUT HER NASAL CANNULA IN AND DOING GREAT. I was able to feed her her bottles at 3:00 and 6:00 and she did well also with just a little attention paid to helping her take breaks to keep her oxygen saturation up.


Carissa spent a total of 11 hours or so without the nasal cannula in before getting it put back in tonight. She had a lot going on between eating, getting an IV put back in for a platelet transfusion, getting weighed, getting the transfusion...so we'll celebrate her first almost half day breathing entirely on her own.

As I am sure you figured out from the run-on sentence above, Carissa's platelet count dipped below the threshold so she needed a transfusion of platelets. We also learned that one of the stipulations for Carissa going home, and perhaps the most challenging for her, will be to maintain a platelet count of above 100 so now we know how to pray about that. Most, if not all, of her other numbers, including the neutrophil count, were in good shape. Now on to the mini-interview. As you can see from above Carissa had a busy day so there was not a lot of time for the media...even if it was her Dad.

Carissa preferred to do today's interview as a series of imitations to show off her creativity and flexibility a little so here goes. Alright Miss Carissa, what does Daddy look like when someone wakes him up from a nap?




Wow. Do I really look that groggy? Hey, can you do Eliot from E.T. when that bright light from the spaceship was shining down on them?




I had no idea you could do special effects. That's pretty cool. Can you imitate Luke looking innocent before he yanks out the wireless card and Daddy has to chase him around and get the wireless card back before he can finish the update?



I don't care what anyone says. That's a very impressive imitation. Show them what a very content baby in the Level 2 NICU looks like.



Now show them what a mischievous baby looks like when her diaper is about to get changed and the nurse doesn't know it is a dirty one.





I can't believe you would pull a trick like that. You must get that from Mom. Ok, one last imitation. What does it look like speeding down a hill on this wonderful ride, the Carissa Coaster?

Once again, very impressive special effects on the wind-blown hair. Thank you for your time today, Carissa.

• Please thank God for Carissa's progress and for letting her spend 11+ hours breathing on her own today.
• Please pray that Carissa's platelets will be able to start stabilizing to the point that they will stay above 100 and that her other blood numbers continue in a good range.
• Please pray for wisdom for the doctors and staff as they seek to find out how they can help Carissa's platelet situation and look for what is causing it.
• Please continue to pray for Dante and his mom, Misty.
• Please pray that God continue to be glorified as Carissa's story is told.

What an incredible verse occurs in Romans 8: 31 that can be applied to every challenge we face. What, then, shall we say in response to this? If God is for us, who can be against us? I don't think you will regret taking a minute to ponder the power of that verse.

Thank y'all once again for your prayers and please keep'em coming.

Yours and His

Terry

5/28 update

Carissa's blood count this morning showing most things ticking up except for platelets which is still declining fairly quickly, especially considering that they had started moving up a few days before this decline started. Carissa has taken almost all of her feedings orally the last two days and they are thinking about taking the tube to her stomach out of her nose. Now, I am just a humble homebuilder, but it seems to me that the fewer things you have in your nose the more flow you can have to your lungs. I know it isn't much but I hope it will be something else that will help Carissa's breathing a little bit.

I know I mentioned the power issue in Hockley last night. Did I mention that we have to take infant CPR tomorrow afternoon as another step in getting Carissa home? I guess that is in case we know someone who has an infant who might need CPR someday. Did y'all know that my amazing wife performed CPR on an elderly gentleman one time shortly after we got married while she was working in a bank and this man went down in the lobby? Everyone else kind of went into at least a mini-panic and Pamela kept him alive until the paramedics arrived and took over. While I am rambling, I should let you know that Hockley is actually named after George Hockley who was the Commander of the Texian artillery at San Jacinto, so it really is pretty cool to live in a town named for him.

Tomorrow I think we will hear about the results from Carissa's renal ultrasound today and she will also take her OCRG test that will show how well she breathes during her various activities (sleeping, crying, eating, pooping, renegotiating room rates, plotting to overthrow her brothers...) and will determine if she will be on oxygen and monitors when she goes home.

We have had the misfortune of seeing at least one baby that was about to go home have a setback and go back to level 3 NICU instead. I just tell y'all that to really encourage you to keep praying for Carissa and let's not take anything for granted while being very thankful for how far the Great Physician has brought her.

• Please thank God for Carissa's amazing progress and for Him being so obvious in her life
• Please pray that Carissa will continue to strengthen and that most of her blood components and management will continue to improve and that her platelet production and management will begin improving
• Please pray that the tests will show Carissa's improvement and will give a clear indication of what assistance, if any, she will need to have at home.
• Please continue to pray for Dante who was in Carissa's area in Level 3 NICU, and for his mom, Misty, and that Pamela might be able to visit with her sometime.
• Please pray that more opportunities will happen like yesterday where Pamela was able to give credit to our Almighty God while not minimizing the assistance of everyone at Texas Children's Hospital

Thank you so much for your prayers and please continue to intercede for our little Carissa.

Come to Me, all you who are weary and burdened, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. Matthew 11: 28-29

Yours and His,

Terry

5/27 update

I love roller coasters. One of my favorite is Superman at Fiesta Texas. Sometimes it feels like we have been on a 7 week roller coaster going back to 4/8 when we first checked into St. Luke's (no relation to our Luke). The thing I like about roller coasters is that you know there are going to be some surprises, but it always winds up working out. Our ride on the Carissa Faith coaster has been quite a thrill. How do you like that pose in the picture?

The last two days have fit the roller coaster analogy. There have been highs, lows, pleasant, and not as pleasant surprises...but the coaster is still on the tracks. Tuesday morning was greeted with news that Carissa's blood count numbers had generally fallen with the platelets and neutrophil count in a pretty bad range. The interesting thing is that during rounds Tuesday morning her team decided to skip a day on the cbc so we didn't hear today about the counts today but will Thursday morning after they test again.

They decided today to start taking some steps that need to be done before Carissa gets to go home, so that is very cool. As exciting as that is, imagine taking your 7 or 8 week old daughter home that has always been on some sort of oxygen support and had monitors on that warned you of every heart rate plunge or oxygen saturation issue. It is a little different things like that happening at one of the best hospitals in the world and happening in Hockley, the town that causes you to clear your throat just to pronounce. One of the tests Carissa will be taking will determine if she goes home with oxygen support and with any monitors. Although they are not mentioning her going home in the next few days they are still doing the test to determine with what support she will go home with on Friday. Did I mention it is not uncommon for our power to go out at times?

Carissa has continued to gain weight and is barely over 6# 5oz. now. She has taken most of her feedings by bottle except for the overnight ones. You probably have not heard that Carissa renegotiated her room rate and even worked out a rebate straight from Pampers after the transfusion from Dave, our Director of Purchasing. I wonder if the transfusion has anything to do with that?

• Please thank God for Carissa's amazing progress (see below for a reminder of how amazing)


• Please pray that Carissa's heart rate, ability to produce and regulate blood components, and oxygen saturation will strengthen and improve to where these all need to be.


• Please pray for wisdom for the doctors and staff to know when to act, when to just let Carissa keep strengthening, and how to prepare her and us for her going home.


• Please pray still for Dante and his Mom, Misty and that Pamela might be able to visit with her before we get to go home.


• Please take every opportunity to glorify God for Carissa's progress

As the nurse practitioner was going over some of the "getting ready to go home" items today with Pamela she paused in the middle to say "Do you know how blessed y'all are to be even talking about a baby going home at 7 or 8 weeks old that had hydrops at birth and was born 7 1/2 weeks premature?" Pamela assured her that we did know how blessed we are to have a great hospital and staff, hundreds of people praying for our daughter, and an Almighty God choosing to show His favor on us when we don't deserve it. We are blessed indeed.

Thank you for being part of that incredible blessing by praying for Carissa, and please keep on praying. I don't think we can finish without remembering the end of Ephesians 3: Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen.

Yours and His,

Terry

5/25 update

Carissa seems like she has decided that bottle feeding is the way to go. She took at least 6 in a row before finishing 2/3 of her bottle tonight after her bath. The bath normally wears out any of the babies for a while so it was impressive that she finished most of the last bottle. I guess we owe that to the strength gained from the transfusion because I have known Dave probably 15 years and have never seen him do anything but take his meals orally...although I have seen him use a straw for his Diet Cokes.

Luke helped out by brushing Carissa's hair today. We would have taken a picture except all hands were in full ready and defensive position just in case the brush became more of a weapon than a grooming device. Both Carissa and Luke survived that well. Colton spent his time in the NICU studying for his tests this week. After a pretty rough start to the 9 weeks Colt has buckled down and has really done a great job of raising his grades. He only has two tests left Tuesday and one each on Wednesday and Thursday and he will be done for the year...and he'll tell you it isnt a day too soon.

There is still not consensus among the doctors as to what Carissa's root challenge is since there have not been clear test results showing a diagnosis. Dr. Abassi, Carissa's main doctor in level 2 this month, still feels like it is some variant strange form of antibodies destroying her platelets. If that is so then she should really stop having the platelet issue by 6-8 weeks of age. That would be a little surprising since she did have a time when her platelet count was rising instead of falling for a while.

I think the doctors and staff still feel pretty good about the direction that Carissa is going and mentioned again today that maybe in the next couple of weeks we can start thinking about her being able to go home. How much she progresses in the next couple of weeks will determine if that is possible, as well as to whether she goes home fairly "normally" or if she will need to have monitors and oxygen support. As an fyi Carissa is up to almost 6# 3 oz. now, so she has been growing well.

• Please thank God again for all the progress He has led Carissa through.
• Please pray that Carissa will continue to strengthen and that she will start producing and properly regulating all her blood components and that her heart rate will stay in the range that it needs to.
• Please pray that they will be able to start weaning Carissa off the oxygen support and that she will continue to improve on feeding orally and even start to get part of her milk through nursing.
• Please pray for Dante and his mom, Misty, and that Pamela will have the opportunity to visit with her again.
• Please pray that our Almighty God is glorified in Carissa's progress and please help that happen as you relay Carissa's story.

Thanks again so much to each of you for praying for Carissa and please keep praying for her. Let's finish with another great verse Travis' friends had waiting for him last year after he returned home after his brain surgery to remove his tumor:

"And call upon me in the day of trouble: I will deliver thee, and thou shalt glorify me." Psalm 50:15

Yours and His

Terry

5/23 update

I was once again perusing, if that is indeed a word and if it indeed is spelled correctly, through some old updates to see how long it had been since Carissa had received platelets or red blood cells. She did get an rbc transfusion today and actually received blood directly from our friend David Walton who is Director of Purchasing at Trendmaker Homes. I feel like I should have started with "Today's update sponsored by David Walton." Since he supplied today's rbc's and he and his wonderful wife Marie were the first non-family members to visit just hours after Carissa was born (and since his grown kids have not made him a Granddad yet) we may have to make him some sort of honorary something or other. Dave has O- blood which makes him a universal donor. As head of purchasing at Trendmaker and a very efficient negotiator, Dave has never been considered a universal donor by companies that work for us. Martha Philipp, our Trendmaker Sales Manager, and I also donated blood but Carissa's last transfusion was also O- so they thought it best to stick with Dave's blood.

Anyway, it had been 3 weeks and 6 days since Carissa last received rbc's and that followed her 2 week 5 day gap between her platelet transfusions. Carissa's reticulocyte (newly formed rbc's) count had been increasing some but not enough to keep her from needing the rbc transfusion. It is easy to be a little discouraged about Carissa needing the transfusions but then I think back about the predicition that she would need them very often if she lived long enough to need them at all, I see in the updates prayer requests that Carissa be able to maintain her temperature without a warmer or incubator, I read excitement in the update as she moved all the way from 1.5 ml to 9 ml and now she is at 56 ml of milk at a feeding and taking many feedings orally...her progress is nothing short of amazing and a testament to your and our prayers and a merciful Almighty God who has allowed our little Carissa to be a living miracle every day.

Today was not without stress because it took 5 different people trying and multiple attempts by most of them to try to find a vein to get an IV in for the transfusion. Carissa was worn out from crying by the end and had kind of shut down and started ignoring them fiddling with her by the end. Pamela and I were worn out from being one tense muscle the whole time they were trying to get the IV started and from trying not to cry as loudly as Carissa...ok that last part was just me, not Pamela. They wound up having to put the IV into the top of her head and Carissa has thus had one of the worst hair days on record for anyone, not just her.

I must mention that I had a great conversation early this morning with one of the staff that I had a difficult time with yesterday and learned more about her and what has been going on in her life over the past 1 1/2 years. God gave me an incredible reminder that you might want to cut people some slack even when things seem to be very challenging in your own life and they don't seem to be helping to full capacity. You would think since I am old enough to be the father of some of the parents we see in the NICU I would know better. I think if I remembered the 100th Psalm more often I might not expend so much thought and energy needlessly.
Shout joyfully to the LORD, all the earth. Serve the LORD with gladness; Come before Him with joyful singing. Know that the LORD Himself is God; It is He who has made us, and not we ourselves; We are His people and the sheep of His pasture. Enter His gates with thanksgiving and His courts with praise. Give thanks to Him, bless His name. For the LORD is good; His lovingkindness is everlasting, and His faithfulness to all generations.

• Please thank God for Carissa's progress and His love and mercy being so evident in her life
• Please pray that Carissa will be able to take the platelet transfusion yesterday and the rbc's today and use these as a strong push in getting better and overcoming some of her blood and circulation challenges.
• Please pray for the doctors, nurses, and other staff to make wise decisions in Carissa's care and that they will know when to act and when to allow her to mature through some issues on her own (We all know she is not on her own!)
• Please continue to pray for Dante (who was in Carissa's area in Level 3 NICU) and his Mom, Misty, and that Pamela might be able to see Misty to check on their progress and to let her know of prayers being lifted up for them.
• Please pray that people would take advantage of giving glory to our Almighty God as they share or even hear of Carissa's story.

Yours and His

Terry