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