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

5/22 update

Many of you will not be able to fully appreciate the analogy I am about to share if you are not in the same industry that I am in, homebuilding. Sometimes you see something in your child's life and just know more about them that you thought you could at this point. There have been points like that in Colton's life, our 13 year old , and has already occured with Luke who is just 19 months old. Today I was thinking about Carissa. She jumped out ahead of schedule but has really been significantly behind schedule since then and she has been thousands of dollars over budget (we are fortunate to have great insurance so there is minimal effect to us directly). Then it hit me! Carissa is going to be a land developer! My apologies to those of you in that industry...but you know the truth when you hear it. :-)

Carissa needed a platelet transfusion today which is a little disappointing because it reaffirms that the NAIT diagnosis was not a true diagnosis, or at least it is not a complete diagnosis. The good thing is that this is the first transfusion she has had to have in a while, over two weeks. The possibility of her needing a red blood cell transfusion exists but they are trying to see if she can go without and let her try to get her rbc count up on her own. It seems there is a time in each newborn's life where there red blood cell count drops so that it triggers their body, specifically the bone marrow, to start producing the rbc's. They are trying to let that naturally occur in Carissa but their vampiric ways of taking draws might make her have to have some help with rbc's, which will cause her body to hold off on full production, which will make her go down again, which will...do y'all feel like we are on the crazy traffic circle in Waco? I love the Elite Cafe but not enough to get on that circle with people who either are on it for the first time or are on it for the 1000th time and still don't know how to use it.

It was one of the few frustrating days we have had with dealing with the TCH staff. They were supposed to inform us of the transfusion decision but only called one number. When I called in a little later the nurse told me she was on break and never even mentioned that they had tried to contact us earlier. Most of the nurses could have manuals written about them for their incredible people skills and customer service skills. We had the "before" column today. It was not a willing slight, just not a strong suite of today's nurse. It unfortunately happened on a day when things were not as rosey with Carissa. The picture above was taken by Pamela after we had learned that they only tried to contact us on one phone number when all of our numbers are listed clearly on their paperwork. I would talk nicely and sing to Carissa but was not in the mood to deal with adult humanity at that point. I was, however, helpful enough to teach them why you have multiple numbers written onto the spaces for the multiple phone numbers. When that was followed up with Carissa spitting up about 1/2 of her bottle as a result of being jostled and made to cry while two nurses tried to get an IV in for the transfusion within 5 minutes of her eating I was kind enough to teach another class titled "You wouldn't let her go in swimming right after eating, so maybe shaking her and making her cry isn't a great idea either." Realizing I had for only about the second time in the 6 1/2 week challenge broken my goal of being the best family that they could possibly deal with, I spent part of the next few minutes apologizing and trying to convince the staff that Carissa's dad is not pure evil incarnate. I've asked y'all repeatedly to make sure God gets the glory in Carissa's story and that can't happen with me telling it if they think I'm on the oppositional side of God.

• Please thank God for Carissa's progress and for that clearly being seen in how her breathing has improved/matured remarkably in the last 10 days.


• Please continue to pray that Carissa's entire circulation and blood systems will also mature and she will be able to produce and regulate all the necessary blood components.


• Please pray for the doctors and staff to make correct decisions on the tricky balance of treating symptoms, allowing for Carissa to grow into some things, and probing for one or more correct diagnoses.


• Please pray for Dante and his mom, Misty, and that Pamela might be able to see her and let her know of your and our prayers for them.


• Please point the glory to God when telling of Carissa's progress and pray that He is glorified in her healing and in every step along the way.

One of my favorite things to do is to thank y'all for your prayers and to request y'all to keep them coming...so thanks, and please keep it up!

Terry

5/21 update

Once again we want to express our appreciation for all the prayers being lifted up for Carissa. I spent a little time last night re-reading many of the updates just to remind myself of how far she has progressed in 5 weeks. It is easy to get bogged down in some of the things that are not going as well as we would like and it is easy to lose the overall view of the opinions of the doctors that Carissa would be in extremely bad condition at birth with all the "if's" centered around her not likely having a lengthy future. She was indeed very sick at birth, but not nearly as bad a shape as was predicted.

Carissa's progress could be described as an upward spiral where sometimes there are some setbacks where those are usually followed with positive steps that are a little higher than the previous highs. I was staring at the her monitor this evening amazed at the slower breathing rate that seemed an almost impossible goal just a few days ago. Her oxygen saturation stayed mostly steady today on the minimal setting of oxygen support. She is still taking much of her milk by bottle although she is not nursing much these days. It seems her really alert times are not matching up well with her official feed times.

Carissa's blood count numbers were generally a little up today and Pamela was brave enough to ask the NICU team during their rounds if we could back off some of the proposed tests until Monday and just see how Carissa responds to not having additional blood drawn off. They are still going to draw 0.5 ml. each morning for the complete blood count just to keep a close eye on the count instead of letting symptons set off the alarm for forther action. We are good with that and want her to have a transfusion if needed...we just want to give her a chance to show she can keep producing some of what she needs if she isn't having to replace a lot of blood.

• Please express thanks to God for for Carissa's five weeks with us and for all the steps He has brought her through in that time.
• Please pray that Carissa will be able to produce the blood cells she needs and that she will properly regulate her blood components and that her heart rate will stay steady.
• Please pray that Carissa will continue to get stronger and be able to keep making progress toward being able to come home.
• Please continue to pray for Dante and his mom, Misty.
• Please pray for Carissa's story to point out the attributes of our Almighty God to some who might not regularly take the opportunity to recognize Him.

Let's end with another one of the verses Travis was greeted with when he returned home after his surgery on his brain cancer last year. I think we all fit into it.

I have carried you since you were born; I have taken care of you from your birth. Even when you are old, I will be the same. Even when your hair has turned gray, I will take care of you. I made you and will take care of you.
Isaiah 46:3-4

Please keep interceding for Carissa. I look forward to telling her the accounts of known and unknown friends taking her needs before the throne of our Heavenly Father who so graciously and wonderfully has provided for those same needs.

Terry

5/20 update

The blood was drawn around 11:30 for the test to see if there were abnormal blood cells that would require Carissa to have the painful bone marrow tests to see if she had blood cancers. Our wonderful nurse followed up to make sure the lab received the samples and found out it would take 2 hours for the test results to come in but also found out they would go directly to the head of the hematology department as opposed to being entered directly into the system where she could check them. Two hours came and went with Pamela anxiously waiting with Carissa and me almost breaking my belt yanking my blackberry off to read it every time it buzzed. Another hour went by and then another. Finally it was time for Pamela to leave and for me to show up to be there in case the doctor still came by and I was fearful that we would miss them in the few minutes that neither of us were cribside (I'll put off the results so y'all can experience some of the wait with us.).


This morning Pamela and I were talking about the mix between fear and faith that we were feeling and discovered that God had brought to both of our hearts separately as we drove home last night the account from Mark where the father of a demon possessed boy tells Jesus "But, if you can do anything, take pity on us and help us!" Jesus replies "If you can? All things are possible to him that believes." The man then cries out "I do believe; help my unbelief." That is where we were. We had both been praying that exact thing at the same time without knowing it. "I do believe; help my unbelief." My quoting Genesis 1: 1 last night probably makes more sense now that you know what God was leading us through last night. He was reminding us again that the Almighty Creator God, our merciful Redeemer God, can absolutely handle any issue that Carissa Faith Shuffler has facing her. She is, after all, on loan to us from that same God, just as Colton and Luke are.


I was holding Carissa and visiting with my brother who had stopped by when I made a somewhat kidding but mostly sarcastic comment to the nurse about maybe making the doctor wait on something like he was making us wait on this news. Sure enough, the words had hardly left my mouth when he came walking around the corner...approximately 4 hours and 1/2 of eternity after the results were likely sent to him. We had been told that the lack of promptness was probably a good sign for us but that is hard to believe when you are in the midst of waiting. Praise God that the results he had to tell me really were good in that there was no sign of "abnormal" or "peculiar" cells in Carissa's blood that would warrant the painful bone marrow sampling to check further for blood cancers. Can I get an Amen?! They are going to repeat a test they did at birth for another type of antibody disorder that might be causing Carissa to destroy some of her blood cells.


Carissa took most of her bottles today, often while appearing to just sleep and suck at the same time. Her blood counts today showed some deterioration of some counts while the neutrophils continued to slowly rise. Some of the decreases can be tied mostly to the repeated blood draws she has been having since last Friday. She seems headed for another transfusion. I asked the hematologist about just waiting for further blood draws for a couple of days to allow her to try to build up some on her own. He is fine with that but there are other concerns by her regular neonatal doctors that might keep them running the counts daily. We have asked that they at least consider this. If her oxygen saturation or anything else point to needing to test sooner we would, of course, be in favor of that.

• Please thank God for the great results and for all He has done in Carissa's life.


• Please pray that the doctors and staff will have perfect wisdom in deciding whether to give Carissa a couple of days to try to build up some of the blood numbers on her own.


• Please pray that Carissa will continue to grow stronger and that her body will produce the blood cells and components she needs and will regulate them properly and that her heart rate will remain in the range that it needs to.


• Please pray for Dante and his mom, Misty, and for a chance for Pamela to visit with her.


• Please pray that God will continue to get the glory in Carissa's story and please take advantage of opportunities to see that He does.

Thank y'all so much for interceding for Carissa as well as your prayers for all of us...and please keep praying!

Terry

5/19 update

Pamela was there this afternoon when the head of the Hematology department came by to talk about Carissa. Her numbers were basically a little higher or steady today on her blood counts. However, under the microscope there are some cells that don't look exactly right. They might be immature cells but there is some concern that they are "peculiar" instead so they are going to draw additional blood tomorrow to run a test that will determine if this could be an indication of something else like some sort of blood cancer. The test will not say if Carissa has some sort of blood cancer, just if that is a possibility. If the test indicates that then they will attempt to obtain some bone marrow to test. That is very likely a very painful process for a newborn and is very difficult to do. The doctor used the needle in a haystack analogy.

The Hematologist also gave a clarification on the hematology report that came back that the doctors had interpreted as her having NAIT, neonatal alloimmune thrombecytopenia, and said that actually she either does not have that or she has a variation of it that they are really not familiar with, so we really don't have a main diagnosis on what was/is going on with Carissa's platelets.

Carissa actually took 5 feedings in a row totally by bottle but has acted very tired at the last 2 feedings. We don't know if she is just worn out from bottle feeding, is tired from having blood drawn every day, or is tired from something to do with her blood. Like many of you have suggested to us, all the unknown is really challenging. Carissa is also looking a little paler these days. Once again that could be from the same issues just mentioned with her tiredness or form something completely different.

• Please thank God for the progress that Carissa has made and for those working diligently to help her.
• Please pray that Carissa's blood and circulatory system will improve and that she will be able to produce and maintain all her blood components properly.
• Please pray that Carissa will not be found to have cells that indicate cancer and will not have to have her bone marrow sampled.
• Please pray for Dante and him mom, Misty.
• Please pray that we will keep giving all this to the Lord thankfully and that we will have that peace that passes all understanding. We really are thankful to be having these issues now compared to what was predicted for Carissa before she was born.
• Please pray that God will continue to get the glory for Carissa's healing.

The first verse of the Bible is "In the beginning, God created the heavens and the earth." The Almighty God who spoke the world into being is the same God that we are asking to heal Carissa.

Thank y'all so much for your prayers and we ask you sincerely to continue,

Terry

5/18 update

Our pastor challenged us this week to memorize 1 Corinthians 10:13 that says "No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, that you may be able to endure it." Do you realize what an incredible promise that is? We always have the ability to not give into a temptation.


Carissa's blood counts were not as good today. Her neutrophil count was almost exactly the same as yesterday, which we were pleased with, but most of her other numbers were lower. They will still be checking every day unless the numbers improve. Carissa did take bottles at most of her feedings over the last 24 hours so that is very good. She still has a few times when her heart rate dips low her oxygen saturation dips occasionally also. Her weight is still trending up. She has gained at least a pound from her low point after she lost all the excess fluid and she is almost back up to her birth weight.

• Please thank God for the amazing improvement Carissa has had over what her condition was expected to be at birth and in the month since then as well as far her consistent weight gain after the original fluid was lost.


• Please pray for Carissa's blood and circulatory system that her blood counts would improve and keep trending up, especially the neutrophils (one type of mature white blood cell) which are still dangerously low. Her heart rate also needs to mature and stop having the dips.


• Please thank God for Carissa being able to take more food orally and pray that she will be able to nurse some.


• Please pray for Dante, who was in Carissa's area when she was in level 3, and for his Mom, Misty, and that Pamela might have the opportunity to see her around the hospital to at least let her know y'all are praying for them.


• Please pray that God will continue to get the glory as people hear of Carissa's story and His faithfulness to all of us.

I know I typically end these updates by thanking y'all and it probably just looks like a habit. Please know that we really do appreciate your prayers and we sincerely request that you keep praying for Carissa and for her healing.

Terry

5/17 update

As you can see Carissa celebrated her first month alive with a nice nap with a doll friend and in a pink frilly outfit. I think I might be able to get used to these pink outfits...for her I mean. Can you believe Carissa was born one month ago today?

I started these updates often quoting Philippians and somehow I find myself going back to one of the first one passed along which is also one that Travis had passed back to us:
And my God will supply all your needs according to His riches in glory in Christ Jesus. Philippians 4:19
Of course Travis would not be caught quoting anything in orange...I added that.

Carissa's blood counts showed improvement again today. Most things were actually up a little today. Her platelets were in better shape than the last couple of days and her neutrophils were higher although they are still only around 10% of what they are supposed to be. Some of her other basic blood numbers actually showed improvement as well. Some of those don't even make sense to be up because they tend to be pretty sensitive to the drawing of blood for testing. We don't really care if it makes sense or not, we just thank God for the improvement. There is much more improvement needed but the last two days have yielded steps in the right direction.

Carissa was also able to take a couple of complete bottles today and we are very thankful for that. Her nurse for the last two days noticed that the nasal cannula was a little small for Carissa and might be getting stopped up some so she changed that out and her oxygen support was able to be turned down some today and she was still reading well on her oxygen saturation levels. Tonight as I was holding her after Pamela had, Carissa's saturation readings kept trending a little low. I was getting a little frustrated thinking Carissa was playing favorites with Mom because she had been in the mid 90's with her and only the mid 80's with me. After a few minutes the nurse noticed that the oxygen tube had come off the supply and when that was corrected Carissa proceeded to read in the high 90's while I was holding her...not that I'm competitive or anything.

• Please thank God for how far He has brought Carissa in her first month with us and for her improvement these last couple of days.


• Please pray that Carissa's body will continue to get better and producing the blood products that she needs as well as regulating them correctly.


• Please pray that Carissa will continue to get stronger and that her breathing and heart rate will stay in a good level


• Please pray for Dante, who was across from Carissa in level 3 NICU, and for his mom, Misty.


• Please pray that the doctors and nurses and other staff will be wise in knowing when and how to treat and when to wait and observe with Carissa.


• Please pray that God will ultimately be given all the glory for Carissa's progress as people hear of her progress, your prayers, and His faithfulness.

Thank y'all so much and please keep praying for Carissa

Terry

5/16 update

We had a pretty long discussion with a doctor from the Hematologist group last night and probably gained a little better understanding of Carissa'a situation right now. After talking with him, looking at some graphs of Carissa's counts of various blood components (I had no idea that there were so many specific components of blood), discussing more with a nurse practitioner today, doing some research on the internet, and staring at more of her numbers this morning, it seems that Carissa is having issues regulating her different blood components (my personal oversimplification). It is not a surprise this is the case with her severe anemia in the womb, her alloimmune thrombocytopenia diagnosis, all the blood that has been drawn for a multitude of tests, several rbc, platelet, and plasma transfusions...I could actually go on for a while.

The main problem right now, like I mentioned yesterday, is with the white blood cell count, specifically the neutrophils. A good sign is that Carissa's body is reacting to the low level and producing lots of new white blood cells that have not matured yet. The neutrophil count this morning was officially the same by the way they look at the numbers and still very very low. They seem to look at ranges and within a range seems to be considered basically the same reading. The absolute neutrophil count, ANC of course, was actually a little higher, but not so much that it can really be considered an improving trend yet (except by me, knowing that we and many of y'all were specifically praying for that).

The tests for infections, both of the blood and any sort of urinary infection, came back as negative and her liver function tests came back normal which we were very thankful for that. These are both good news and yet frustrating because any sort of infection could have helped describe at least part of Carissa's neutropenia issue.

The more you learn the more you realize you don't know and there seems to be a lot of that going around right now. As brilliant as the doctors are that we are dealing with and as much as they know, and it is crazy how much they know, only God can it be said about:
"For Thou didst form my inward parts; Thou dist weave m in my mother's womb." Psalm 139: 13

We are so blessed and thankful that our little Carissa is in the hands of some of the wisest, kindest, most patient, and diligent doctors, nurses, and other staff. We are even more thankful that she, and we, are in the hands of our Almighty God.

• Please thank God for His continued touch on Carissa's life and for how He has revealed Himself to us and to many of you (thank you for your reports of this) during these last 5 1/2 weeks.
• Please pray that the Great Physician will help Carissa's body produce and regulate the many components of the blood necessary for her to function normally.
• Please pray that Carissa will not have trouble keeping her milk down so that she can grow and get stronger which will help her so much with everything.
• Please thank God for the excellent doctors and staff and pray that they will know how best to help Carissa.
• Please continue to pray for Dante and his mom, Misty. (Dante was in level 3 NICU across from Carissa and his mom, Misty, has a heart that was only functioning at about 30% since his birth.
• Please pray that God will get the glory in Carissa's progress

Please know that we mean it when we thank you for interceding for Carissa and please keep praying for her.

Terry

5/15 update/special prayer request

We just became aware of a situation that I wanted to pass along as a fairly urgent need for prayer. Carissa has been diagnosed with Neutropenia which is a fancy way of saying she has an extremely low white blood cell count. This is the same situation that people on chemo get when their immunity is down.

Her platelets stayed about level instead of rising and her red blood cell count is a little low too. They are testing today for blood infections or some sort of urinary tract infection. They should get results back tomorrow and will begin antibiotics to treat an infection if one is found.

She took her entire feeding in a bottle this morning and generally appears to be doing well outside this very serious blood issue. This would answer why the oxygen level on the nasal cannula has not been able to be lowered.

• Please thank God for His protection over Carissa and for how far He has brought her. She turns 4 weeks old today.
• Please pray that these symptoms with her blood will clear up and that all her blood numbers will improve. Obtaining the blood for the sample is not fun for her and it will be happening daily again until this clears up so please pray for that as well.
• Please pray for wisdom for the doctors and staff as they determine how best to treat this situation.
• Please pray that as her blood improves that her breathing and need for oxygen assistance will progress as well.
• Please pray for Dante and mom, Misty.
• Please pray that God continue to get the glory in Carissa's healing.

Carissa is still so susceptible to many things right now so please keep diligently praying for her. Thank y'all so much for your faithfulness in this.

Terry

5/14 update

Ok, Carissa's dad is a slacker and took a couple of days off. Sorry about that. Problem is I don't have any new pictures and am pretty sure that won't sit well with some.

Carissa has had a pretty good start to the week. We are in the phase of a little slower moving sometimes now so it can be a little hard to not see as fast of improvements as we saw in her first 3 weeks. Of course she has overcome so much that there are not as many things to work through now. Carissa's platelet count went up again Monday and they are only checking it on Monday and Friday now. Her breathing seems to be slowing down some. She nursed pretty well at noon yesterday and I was able to feed her her entire bottle at 6:00 yesterday evening. She had started tiring out some trying to feed orally at every feeding (every 3 hours) so they have gone to orally feeding every other one except when Mom is there she can nurse every time.

She has grown to 19" long from 16 1/4" at birth and is up to 5# 9oz. You may recall she started at 5# 12oz but a lot of that was the fluid from the Hydrops that needed to be lost and she went down to well below 5# and has been working/eating her way back up. The level of oxygen support in the nasal cannula for Carissa has been fluctuating but staying in a little higher range than when she was in level 3 and that is one of the big things that needs to improve for her to be able to start thinking about coming home.

Carissa was very alert and stretching and moving and pulling out her nasal cannula when I was there last night. A nicer man than me would have put her down and taken more pictures to share. Unfortunately for you her Daddy was quite content just holding and talking with Carissa.

The view that Dr. Gedde shared last week about not really thinking that Carissa would have any long term issues is a view that we really like but not necessarily one that some of the other doctors agree with or at least think that they are ready to embrace. They are not necessarily saying that Carissa will have any long term issues but they are concerned about her anemic condition before birth and whatever caused that condition, thinking that developmental could still arise as a result of those conditions. We, of course, are planning on Dr. Gedde being a prophet and know that the Great Physician can heal her of any things that might should have come up just like He has already time after time.

• Please thank God that Carissa is on her 28th day and for bringing her through the amazing steps He has to get her to this point.


• Please pray that Carissa will continue to grow and get stronger, that her breathing will continue to slow down like it has, and that her oxygen content can start being weaned down.


• Please pray that God will continue to amaze us with progress that He brings Carissa through and that she will not have any long term issues to address.


• Please continue to pray for Dante and his mom, Misty, and that Pamela might have opportunity to see her and check up on them


• Please pray that God will continue to get the glory for these amazing 28 days and counting that He has proven more than able in Carissa's life.

May we all be as amazed as John was when we consider what he wrote in 1 John 3, "How great is the love the Father has lavished on us, that we should be called children of God!" Thinking about that verse can make you feel very inconsequential and very important all at the same time. Who are we to be able to call ourselves children of God...and how awesome is it that we can do that!

Thanks for praying and please keep praying,

Terry

5/11 update from 5/8 interview

Carissa, you look pretty intense and ready for this interview. Can you take a deep breath, maybe calm down a little, and answer a few questions?

Great. First, why don't you tell everyone what you do when your nurse is not watching.

Now you know you're not supposed to pull the nasal cannula out, but I do understand that it bothers you. How are you going to feel when they tell you that you can remove the cannula and the other wires and go home with us?

You look pretty excited. You aren't always that happy because sometimes the other babies around you wake you up with their crying. How does that make you feel?

Wow, you look like someone just traded your pacifier for a sour pickle. It probably isn't that bad when they cry. What do they sound like?

That's pretty loud. Is there some way you can think of that might help them to stop crying?

I don't think putting your fist in their mouth is going to help them. I hope you didn't learn that from Uncle Keith...but back to the questions about life here in NICU level 2. We are happy you don't have to be on any medications right now but we do see them giving you vitamins. How do they taste?

I'm glad I don't have to take those vitamins. You seem to already be close to your family and you have always responded very well to Mommy being nearby and she spends a lot of time with you. How would you react if someone said you didn't have the best Mommy in the world?

Well then, I would recommend against anyone saying that. You look like you pack a pretty good punch for someone weighing 5# 6 oz. today. Well, I better let you get some rest but I wanted to let you know there has been some talk of maybe throwing a party to let everyone meet you a little while after you come home. What would you do if you came out of your room and everyone was there waiting to surprise you?

That's a good look for you and I think everyone would enjoy getting to see that look in person.

• Please thank God for another couple of good days and for Carissa's amazing progress these last 25 days.
• Please pray that she can gain the strength she needs to have to nurse and take a bottle without getting too tired out.
• Please pray that her lungs can continue to mature and her breathing progress so that she can start being weaned off the oxygen support.
• Please continue to pray for Dante who was across from Carissa in level 3 and for his mom, Misty, who went back to work today with a heart functioning only at 30%.
• Please pray that God will continue to get the glory as people hear of Carissa's amazing progress and as she continues to heal.

Thanks so much for all y'alls prayers and please keep interceding for Carissa,

Terry

5/9 update

As you see, Carissa got held by biggest bro Colton today.


I mentioned an interview and more pictures and it/they is/are still coming but not this evening...


Today was pretty devoid of any big changes or findings but was just another day moving toward maturing and coming home. Just being able to say that made it a great day.

Carissa's awake periods today did not coincide with nursing periods so that did not go exactly as planned.

• Please thank God for how far He has brought Carissa in just 23 days.


• Please pray that her breathing continues to strengthen and mature and that it is at a rate where she can nurse and that her oxygen assistance can start decreasing


• Please pray that Carissa can be more alert during nursing times Sunday.


• Please pray for Dante's vital signs to stabilize and for his mom, Misty, and for her heart to regain its strength.


• Please pray that our Heavenly Father is glorified as people hear of Carissa's healing.

We are so humbled by your prayers yet so willing to ask you to continue.

Thank you

Terry

5/8 update

Just a quick update to let y'all know everything went pretty well today. Carissa didn't nurse very well but woke up nicely at just the wrong times to nurse. I was able to do an interview with her that I will send out Saturday (with pictures). Praise God we heard two things today that are not done deals but are opinions that we really like to hear. Both were by Dr. Gedde, the doctor over her area of level 2 NICU this week. He said he does not expect any long term issues for Carissa and also talked of what needed to happen for her to go home and said his guess was around the original due date of June 8th. How awesome is that? I will talk more about that tomorrow versus what we were told exactly 4 weeks ago today.

• Please thank God that we can begin to discuss what needs to happen for Carissa to come home.
• Pray Carissa starts making progress toward the specific steps to come home.
• Please continue to pray for Dante and his mom, Misty.
• Thank God for the safe delivery today of Callie Grace Lucas to her parents and our great friends Randy and Stacey Lucas who had Callie at home today by themselves, as well please thank Him for a good MRI today for Travis who had a concern pop up a couple of weeks ago. Travis underwent surgery, radiation, and chemo for a brain tumor last year.
• Please pray God continues to get the glory for all the progress that Carissa both has made and will make.

If I was Randy I would hide those Little House on the Prairie books from Stacey if she gets pregnant again...but that is probably just the envy talking.

Thanks so much for your prayers. I have so much bottled up from being thankful to our Almighty God for what He has done that I might have to write it in the next day or two. Pamela and I were discussing today as we drove home from the hospital how we could possibly suitably express our thanks enough to God. He only asks for our all and that doesn't seem like enough.

Since we received a verse this week both from Travis and our good friend/surrogate mom from Mesquite, Cherree Cowan, it makes sense to share it tonight: "I will both lie down in peace and sleep; for You alone, O Lord, make me dwell in safety."
Psalm 4:8

Yours and His,

Terry

5/7 update

OK, the flash gives her weird color and it has a preflash which made her close her eyes but you have to love that little smile. I had just told her one of my favorite jokes about the buzzard about to board a plane when the flight attendant asked him if he wanted to check the dead armadillo he was carrying. "No thanks," he said. "It's carrion." I'll be honest. She actually had a puzzled look like many of y'all have right now when she heard that joke. She was really reacting to Pamela making cute noises.

Miss Carissa moved to level 2 NICU today and promptly started wondering what all the crying was about and got a little stressed. When one of the other babies would cry loudly Carissa's oxygen saturation levels would drop to below the 85 they like to see it stay above. When they would calm down her saturation levels went up. This is actually with the oxygen supply on her nasal cannula a little higher than it has been recently. They think she will do better tonight when it quiets down and then start getting more used to it tomorrow. Keep in mind she has gone from the level 3 NICU where there is minimal crying and where she was in an incubator to level 2 where there is significant crying and she is in an open crib. That would stress me a little also.

Carissa did a great job around 6:00 this evening with nursing and we are going to try to get to the hospital a little earlier tomorrow so Pamela can nurse her a few times. It gets a little tricky knowing how much she got versus how much to feed her still.

Some of the big news of the day is that we seem to have a diagnosis...we actually have a diagnosis and hope that is the only one. Carissa does indeed have neonatel alloimmune thrombocytepenia. For those of you not wearing scrubs that is a situation where Pamela built up antibodies that were actually attacking Carissa's platelets. Now, this was not something Pamela decided to do but rather something that happened when our two genetic makeups joined to form Carissa. It seems that our case is different than most and we will hear details of that at an appointment with the hematologist on June 2nd. This is great news because the main treatment as described by Dr. Hankens, the May orange team NICU level 3 doctor, is to cut the cord. In the womb Carissa started getting some of these antibodies as some of Pamela's blood mixed with Carissa's and those antibodies have been dying off and thus having less of an effect on Carissa as each day goes by. During many updates early on we prayed and asked y'all to pray for a diagnosis that would be the most favorable and have the least amount of issues later on and we seem to have it. Carissa still has a long way to go and still needs your prayers very much so please keep interceding for her.

• Please thank God for Carissa's continued progress as well as a diagnosis that has already started treating itself by her being born.
• Please pray that Carissa's lungs will continue to mature and that her breathing will continue to slow down to allow the suck, swallow, breathe combo to work well.
• Please pray that Carissa will settle in to level 2 and be able to decrease her oxygen and start being weaned off the nasal cannula.
• Please pray for Dante's lungs to mature and for his vital signs to strengthen and for his Mom, Misty, who is going back to work next week with a heart that is only working at 30% of strength due to stress from the pregnancy and delivery.
• Please pray that people's faith in our Almighty God is strengthened as they see and hear of His deliverance of Carissa.

We have still not really been given any sort of time table of Carissa being able to come home. The cool thing about level 2 is that every Thursday all the standard neonatal doctors and specialists get together to talk about directions and anticipated departure dates. That Carissa has moved to level 2 where this can even start to be on the radar is a huge answer to prayer and such an incredible blessing to us.

Thank y'all so much for your prayers and please keep them coming,

Terry

5/6 update

Does she know how to rest peacefully or what?!


Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need. Hebrews 4:16


How true that has been for us the past 4 weeks since we started on this journey. Our Heavenly Father has been faithful to meet this promise. We started this 4 weeks ago in Dr. Eckhardt's office in The Woodlands and wound up there again today for Pamela's post c-section checkup(where we found out he played football for a large state university in Austin...but I digress). From the first day through today we have never come up short in mercy or grace thanks to our loving God.


Carissa had another good day today...and it started with great news. Since her platelet transfusion over the weekend Carissa has had her platelet count tested Monday and Wednesday morning and they both came back higher. If that doesn't get your fire going then your wood is wet. I can almost hear your shouting, hallelujah'ing, and even whooping. We'll take them all. We still don't have results that give a root diagnosis but we have progress on the biggest challenge and we Praise God for it!

Carissa is up to 54 cc's now per feeding. She is still in the incubator but they have turned off the heat and she is maintaining her body tempterature on her own. It seems that her area is the coolest and draftyist (that's a word now if it wasn't before) in the NICU and that may have contributed to her temperature problem last weekend. Carissa also received her marching orders to transfer to Level 2 today and her nurse tonight wisely decided to order her crib but leave her in her incubator until she moves so that she isn't in the cool draft all night. Nursing did not go as well today but Pamela was not able to try at the afternoon feedings when Carissa is usually the most alert. I am sure we will try for that tomorrow. Do you realize how many of the previous prayer requests we get to check off as answered within a few days or less? How awesome is that and how awesome is He!

Pamela had a good talk with Dante's mom today and got to tell her of y'all praying for him and even asked her for specific things we all can pray about for Dante. We won't be in the area with Dante much longer so pray that Pamela or I can follow up on him regularly by seeing his mom. We cannot just ask about another baby because they are not allowed to tell us anything because of privacy issues.

• Please thank God for His continued mercy and grace and directly answered prayers for Carissa.
• Please pray for Dante's lungs to mature and for his vital signs to stabilize which will prevent more brain bleeds.
• Please pray for Carissa to keep producing platelets and for her to be able to keep maintaining her temperature.
• Please pray for Carissa to be able to progress on feeding orally and that her breathing will slow to help that and that she will even be able to start being weaned off the nasal cannula (y'all are doing such good work praying and God is doing so amazingly at answering that I thought we would just ask for about everything she needs)
• Please pray that God keeps getting the glory and for boldness of everyone telling Carissa's story to tell of the directly answered prayers from our merciful Redeemer God.

Thank y'all so much for your prayers and please keep them coming. They are both effective and greatly appreciated.

Your and His,

Terry

5/5 update

Courtesy of Travis once again: Actually, courtesy of God via Travis:

For You are my hope; O Lord God, You are my confidence from my youth. Psalm 71:5

Carissa had another good day today. One thing I forgot from yesterday is that they are checking her platelets Monday, Wednesday, Friday now which is down from daily, down from every 12 hours, down from every 6 hours. I will stop before I start sounding like the book of Numbers.

And of the third born of the tribe of Shuffler...sorry, I said I would stop that.

Carissa had easily her most alert days today. She was pretty wide awake for one 1 1/2 hour period today and had several more very alert times. When Pamela nursed her during this time I almost had to call Carissa down for smacking. She was really getting it done but did tire after a while. Her milk amounts have been increased to 54 cc's per feeding which is every 3 hours.

I could take the time to tell you about 2 really great photo's we almost had but then that would take another 2000 words. Ok, I'll abbreviate. One was of me holding Carissa looking very pleased...me, not her. I had cuz Suzy take the picture 3 times because I kept looking like a fun house mirror reflection (I know...go ahead...we've had 2 comments on the blog on what feels like 3,234 posts/updates and I'll get 50 on that comment) and then on the third one my phone was out of memory and I somehow deleted that one instead of another picture. The second one was the first unobstructed picture of Carissa taken while they were putting in a new feeding tube while the nasal cannula was off as well and Pamela accidentally shut her camera after I took that picture. You will have to trust me that Carissa looks very different when she does not have tubes and tape sticking all over her face. Let's go for a permanently unimpeded picture soon.

• Please thank our Amighty God for another great day for Carissa. It is exciting and somehow humbling to watch her progress each day in light of what expectations were. (I found today my notes from the first neonatal consult and they are so disturbingly bleak you would not believe everything in them. The amazing thing was it was a 15 minute consult and I probably stopped writing after 3 minutes because the really bad news started then and I wouldn't write it down.)


• Please pray that Carissa gets stronger at nursing and taking bottles and that a little problem with spitting up goes away.


• Please pray that Carissa's breathing continues to improve. (There were several times today when the nasal cannula was out from her moving around when we were holding her and then when her feeding tube was moved to her nose and her oxygen levels stayed high during all of those. She still goes below 85 occasionally but it doesn't stay there long at all.)


• Please pray that Carissa's ability to regulate her own temperature improves and that she doesn't need help maintaining her body temperature.


• Please once again pray that God keeps getting the glory for Carissa's improvements and thank him for the inspiring doctors, nurses, and others that do such a great job with her.

Yours and His,

Terry

5/4 update

I think we may have to start with another verse that Travis forwarded to me.


On the day I called, you answered me; you made me bold with strength in my soul. Psalm 138:3


There is no other explanation for Carissa's progress these last 17 days, especially the last 24 hours after she had had a rough time for a few hours, other than the hand of the Almighty God, the touch of the Great Physician being upon her. Carissa nursed a while from Pamela today and was significantly stronger at it than yesterday although she still did not last very long. Today she only experienced one "Brady drop" where her heart rate drops below 100 that we know of. Her oxygen saturation levels were outstanding most of the day. By late afternoon she was down to the lowest oxygen level on the nasal cannula.


The biggest news of the day was that her platelet count actually rose today a little over yesterday's count! That is huge. I don't know what the margin of error for the count is but I know that this is a huge step even if it is slightly off.

• Please continue to pray and to start with thanking God for the amazing progress He has led Carissa through.



• Please pray that Carissa's ability to take her milk orally gets stronger.



• Please pray the Brady drops go away and that her oxygen saturation continues to improve and progressing toward no help with breathing.



• Please pray that Carissa's platelet count continues to move in the right direction.



• Please continue to pray for Dante, the other baby in her area, as well as for Dante's mom.



• Please pray that God continues to get the glory for Carissa's progress as her story is told.

I hope we get to thank each and every one of you at some point in person for praying for Carissa...actually I look forward to her being able to thank you and I hope she has the opportunity to thank you in person.

Yours and His,

Terry

5/3 update

I know I am in trouble since Carissa is hardly seen in the picture but I had to show you the first family photo. Carissa had a little bit of a rough night last night in that her temperature dropped some and caused her oxygen levels to go down and just didn't sit well with her. They wound up putting her in one of the incubators as perhaps a bit of an over-reaction but it did the job. She will probably sleep much more soundly in there because it really filters out much of the NICU noise.

She had a better day today. Pamela fed her just a little to get her thinking about the idea and I got to give her a little of her 6:00 meal with a bottle. She did well but tired out after about 10 cc's so she took the rest of it through the tube.

• Please thank God for another good day and that her step back was a very minor one.
• Please pray that her eating improves and that she is able to take more of her milk orally without disturbing her breathing and oxygen levels.
• Please pray that her platelet situation will improve and that she will become self-sufficient (really God sufficient) and not have to keep taking transfusions
• Please thank God for the progress we have overheard about with Dante, the other preemie in her immediate area, and pray his progress will continue. He has really improved since we started asking y'all to pray for him a few days ago. Pray we will have an opportunity to mention your prayers and the timing of his improvement to his Mom.
• Please pray that God is given the glory in everything surrounding Carissa's improvement.

Thanks for all your prayers and please keep praying,

Terry

5/2 update

Carissa had another good day today. I love saying that. They increased her feedings to 40 cc's every three hours. She took about 10-15 cc's a couple of times from bottles but tired out and finished those meals by the tube. They are going to let us do one of the feedings tomorrow and see if that helps. Her breathing has slowed down a little bit but it is still somewhat challenging to breath on your own, suck a bottle, and then swallow the milk when you are still over 5 weeks early for your due date.

Carissa's Brady drops, when her heart rate drops below 100, were still occurring today but not real often and they are still not very concerned about them. One thing I neglected to mention yesterday was that she was moved to a crib from the warmer. Her temperature was a little high yesterday but a little low today so her thermostat isn't quite adjusted. They may move her back to a warmer if her temperature does not move up a little bit. It was ticking up slowly before we left this evening.

No one will ever believe this but Carissa was dressed like you see her in the picture when we got there today. I didn't tell them to dress her this way...but I did really enjoy it and thank them. She looks like she has on a giant night shirt because that is a 12 month size. If you don't like the color you can imagine the picture in black and white and then I don't think you'll find the text offensive.

• Please thank our Almighty God for another good day for Carissa.
• Please pray that her platelet situation will continue to improve.
• Please pray that her Brady drops will decrease and then cease.
• Please pray that she will be able to increase the amount of milk she takes orally.
• Please pray that God will get the glory whenever anyone hears of Carissa's story of where she is versus where she was anticipated to be.

Thanks once again for all your prayers and please keep praying.

Yours and His

Terry

5/1 update

We thank God for another positive day for Carissa. They upped her feedings to 35 cc's every three hours and completely stopped the IV which was supplementing her nutrition. She took another bottle for one feeding last night and was able to make it through 10 cc's this morning before switching back to the feeding tube. Her respiration rate is still a little high and causes the coordination between the breathing, sucking, and swallowing to be a little tricky. As Bridget, Carissa's nurse today, stated, "She is all about taking the bottle so it won't be a problem once her breathing matures a little." We are very thankful for that.

One minor problem did develop today and that is that Carissa's heart rate actually settled down a little too low a few times today while she was sleeping. It doesn't stay there but it dropped below 100 for short times, occasionally as low as the high 60's. She generally stays from 135-165 and they are good with anything from 110-170 (It may actually be 100-200 that they are good with). Her platelet count this morning was borderline for needing a platelet transfusion so it is extremely likely she will to get one on Saturday. She has not had one since Sunday and that is easily a new record for her. She will have gone 6 days between them if she gets a transfusion Saturday. I think although her condition is officially level 2 they want to keep her in level 3 for a few days while she makes a little more progress. That will keep her sharing a nurse with only one other baby as opposed to sharing a nurse with 4 other babies.

• Please once again thank the Great Physician for another good day for Carissa and for her being able to take all her nutrition via Cafe Mom.
• Please pray that the lower heart rate will correct itself and will no longer be an issue.
• Please pray Carissa's breathing stabilizes more and that she can start taking more of her milk orally instead of via the feeding tube.
• Please pray that Carissa's platelet count still continues to improve.
• Please pray that Carissa's story points glory to our Heavenly Father and that her healing is seen as a testimony to His mercy and grace and to the power of so many prayers.

One of my friends emailed me today with some scripture promises that many of his friends had pasted around his home when he returned home last January after brain cancer surgery. Travis and his wife Jennifer were an inspiration to me then and they continue to be now. One of the awesome verses he shared that his friends had shared with him:

He himself gives life and breath to everything, and He satisfies every need there is. Acts 17:25

Nuf said.

Thanks so much for your prayers and please keep them up. Carissa's daily improvement is a testimony to their effectiveness.

Terry

4/30 Update and Shameless Advertisement

With Carissa's two week birthday tomorrow what a time to reflect on how thankful we are for all of your prayers and for the merciful healing steps that our Heavenly Father has brought her through. Psalm 8 starts and ends with "O Lord, our Lord, How majestic is Thy name in all the earth!" I hope you have seen and heard of His majesty in Carissa's story. What a great chapter.

Carissa had another good day today. Do you realize that makes 14 out of 14 for an infant that was supposed to have nothing going for her and everything going against her from the time she was born? We are humbled and thankful that God has continued to answer prayer and give us what we have asked for as opposed to what we deserve.

Carissa took one feeding last night and part of one this morning from a bottle. This is a huge deal because if an infant does not start eating orally pretty early on they can have serious psychological problems with eating that usually takes months if not years to overcome. Her feeding amount is up to 29 cc's, about an ounce, at a time every three hours. They have decreased her IV supplement down to 5 cc's/hour and hope to be able to remove it in the next couple of days.

Dr. Flores, the fellow on the orange team for April, said this evening that Carissa is really at a level 2 NICU stage now and should be able to transfer from the level 3 area to the level 2 area in the next few days. The prediction before birth was that if she were to ever leave level 3 it would be after months. I sure do like God's calendar better. Carissa's platelet count decreased but at the slower pace of the last two days rather than at the alarming rate of her first few days.

So many of you have been so great about asking what you can do to help us while saying that you realize that praying is doing something. I've mentioned it before but it really is a big deal that if Carissa's story happens to come up or if you bring it up during conversation please make sure that God gets the glory for her progress. We don't want to ignore how incredible Texas Children's Hospital has been but we also want to give credit to where the source of her healing is coming from.
Please once again thank God for an amazing two weeks of watching Him doing incredible things in Carissa's life. Please also thank Him for another positive report I heard about Dante today and please keep lifting him up also.
Please pray that the transition to the new doctor and fellow and potentially to the level 2 area of NICU goes smoothly.
Please pray that Carissa's platelet count continues to stabilize.
Please pray that she will be able to continue and add to the amount of milk that she takes orally.
Please pray that Carissa will be protected from infection and any viruses floating around.
I want to put in a little plug just in case any of you don't have a regular place of worship each Sunday. Many of you know we have been part of a new church plant the last couple of years. In November we moved into a small strip center on FM2920 west of Tomball just west of Mueschke Road. Our name is LifeBridge Fellowship. We are still very small but it has been so great to see God both use LifeBridge and to bring people to be a part of us. I teach an adult Sunday morning Bible Study class that starts officially at 9:30 although often our visiting takes us a few minutes later than that. Our worship service starts at 10:45 and our pastor is in the second week of a sermon series on marriage and relationships using the movie Fireproof as part of the background. I have not been able to teach the last 3 weeks and I am chomping at the bit to start a new Bible Study series this Sunday, Answers for Life, that is going to deal with some amazing questions and topics on things such as how relevant and trustworthy the Bible really is, whether it matters what we believe as long as we believe in Jesus, how the Bible can be taken as truth when it does mention men over 900 years old but doesn't mention millions and billions of years of history like most science tells us we have, why we have suffering in the world if God is a God of love, and many other of these type questions and issues. Please feel free to join us. For this study the older students will be joining with us. I have a feeling some of Carissa's story will be popping up each Sunday as well.

Thanks again so much for all of your prayers...and please keep praying. I may stop sending daily updates just to keep from becoming annoying...or more annoying if it is too late for that...but please keep interceding for Carissa every day. I will continue to keep y'all informed of how your prayers are being answered and for additional prayer points.

Yours and His,
Terry