We are set for tomorrow. Surgery is scheduled at 1pm (CST). We check in at noon in Fort Worth, so we will leave the house around 10:30am. Becky took Titus for all his pre-op checkout last Friday, so we should be good to go once we arrive. The doctors have already planned for Titus to spend the night in the hospital - mainly since surgery is later in the day and his past history, but he's much healthier now than he has been in the past. It would be wonderful to bring him home tomorrow night, but whatever happens, we know he's in the best care.
Dr. Bauer (our ENT) is performing 4 cochlear implants tomorrow and for most kids this is considered day surgery. When you think about it, that's totally amazing that you can sand a spot into your skull, implant a device, go home the same day and a few weeks later, have everything activated that will enable you to hear. But to also think of the technology that will provide my child with the gift of hearing - well, it's mind-boggling.
Titus has had a good weekend and at this very minute, is playing on the floor - cheering the Cowboys on (and at this moment, the Cowboys are winning - let's hope that continues).
Someone asked us this past week if it's hard preparing for surgery. It's always hard, but as Becky told one of the nurses, we love Titus with "open arms". Handing him over and watching them take your child out of the room and into surgery is never easy - I don't think I will ever get use to it. But, it is an exercise in faith. Faith in knowing that God has a plan and this does not take God by surprise. Faith that the doctors and nurses know their job and are the best at what they do. And a peace knowing that we are surrounded by prayers each step of the way.
So, I'll close and provide an update tomorrow once surgery is complete.
God is good!
Tidings of Comfort and Joy,
Paul & Becky
Showing posts with label Surgery. Show all posts
Showing posts with label Surgery. Show all posts
Sunday, December 14, 2008
Monday, April 14, 2008
My Arms Are Too Short To Box With God
Titus had eye surgery in Houston this morning. After sedating him, they tested the pressure on his eyes, and the levels were high. The doctor immediately went into surgery from that point. Last month, when they did surgery for the glaucoma, they put a channel on the top of his eye. With today's surgery, he installed the channel on the bottom of his eyes and installed a silicon plate at the base which will allow for future testing/relieving pressure.
Dr. Feldman noticed significant nerve damage in his left eye and does not give much hope that Titus will have much vision out of the eye. There is damage in his right eye also, but not as much. As for now, it's really too early to know the extent or depth of damage to his eyes, but we have been somewhat preparing ourselves for this message. We can tell that Titus responds to light, but he does not track objects with his eyes and his pupils don't seem to dilate.
I'll be honest - it's a bit devasting to know your child can't hear, and now to learn there's a very strong possibility that he can't see. But I know that none of this takes God by surprise. As Becky was speaking at her Mom's Group this past week, she shared how God specifically chose her to be Titus' mom knowing all the special needs that he would have. And raising a child with special needs takes time, it takes effort, and frankly it's tiring. But it's the path God has chosen for us and for Titus. And, as my title states, my arms are too short to box with God.
It's all about acceptance and submission. I've been teaching the book of Acts on Sunday morning - and a few weeks ago, as our class was discussing the conversion of Saul, I brought up the point that the Bible always tells us to accept Jesus as Lord. It does not state to accept Him as saviour. See the difference is, if Jesus is the Lord of my life, then He is my master, He is in control, He knows and shapes my life, and I must be submissive to him. Accepting Jesus as Lord puts me under his submission and control. But in our world today, we just want to accept Him as Saviour. But what does that mean - that we are saved from Hell. Jesus certainly does that, but if Jesus is just my Saviour (providing my life insurance) but never my Lord, then I'm going about my way, living my life for myself relying on His Saving Grace, but never submitting to His Lordship. Jesus has to be My Lord AND My Saviour. But, in Paul's numerous letters, he never states to confess Jesus as Saviour, but Jesus as Lord. It's why Paul wrote in Phillippians "every knee shall bow, and every tongue shall confess that Jesus Christ is Lord, to the glory of God the Father..." (Phil 2:10-11).
So, I claim Matthew 11:28-29 today "Come unto me, all you who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am meek and lowly in heart, and you will find rest for your souls..." I am tired, I am weary, but I submit to the yoke and am learning to find rest in Jesus, my Lord.
Please pray specifically for these matters:
Dr. Feldman noticed significant nerve damage in his left eye and does not give much hope that Titus will have much vision out of the eye. There is damage in his right eye also, but not as much. As for now, it's really too early to know the extent or depth of damage to his eyes, but we have been somewhat preparing ourselves for this message. We can tell that Titus responds to light, but he does not track objects with his eyes and his pupils don't seem to dilate.
I'll be honest - it's a bit devasting to know your child can't hear, and now to learn there's a very strong possibility that he can't see. But I know that none of this takes God by surprise. As Becky was speaking at her Mom's Group this past week, she shared how God specifically chose her to be Titus' mom knowing all the special needs that he would have. And raising a child with special needs takes time, it takes effort, and frankly it's tiring. But it's the path God has chosen for us and for Titus. And, as my title states, my arms are too short to box with God.
It's all about acceptance and submission. I've been teaching the book of Acts on Sunday morning - and a few weeks ago, as our class was discussing the conversion of Saul, I brought up the point that the Bible always tells us to accept Jesus as Lord. It does not state to accept Him as saviour. See the difference is, if Jesus is the Lord of my life, then He is my master, He is in control, He knows and shapes my life, and I must be submissive to him. Accepting Jesus as Lord puts me under his submission and control. But in our world today, we just want to accept Him as Saviour. But what does that mean - that we are saved from Hell. Jesus certainly does that, but if Jesus is just my Saviour (providing my life insurance) but never my Lord, then I'm going about my way, living my life for myself relying on His Saving Grace, but never submitting to His Lordship. Jesus has to be My Lord AND My Saviour. But, in Paul's numerous letters, he never states to confess Jesus as Saviour, but Jesus as Lord. It's why Paul wrote in Phillippians "every knee shall bow, and every tongue shall confess that Jesus Christ is Lord, to the glory of God the Father..." (Phil 2:10-11).
So, I claim Matthew 11:28-29 today "Come unto me, all you who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am meek and lowly in heart, and you will find rest for your souls..." I am tired, I am weary, but I submit to the yoke and am learning to find rest in Jesus, my Lord.
Please pray specifically for these matters:
- Healing and recovery for Titus - the doctor expects to release him to go home tomorrow (Tuesday, April 15)
- Rest for Becky and her mom who are at the hospital with Titus & safety while driving home from Houston
- Titus is still on oxygen - the pulmonologist is concerned that he's not been showing much improvement. He sent us to the cardiologist last week who did rule out any heart issues. And, I might add, how awesome is God who works out the fine details allowing us to get into a pediatriac cardiologist with less than a days notice - that just does NOT happen with these types of specialists! Please pray for continued strengthening and healing in Titus lungs so that we can wean him off of oxygen.
- Titus vision - we may not know the extent of the damage for months, but we are praying that Titus will have vision in his right eye.
- Ministry opportunities - as a family, our lives are being opened up to a whole new team of therapists and specialists. We have ECI in our home several times a week assisting with therapy, along with numerous weekly doctor's appointments. Each person we come in contact with is an opportunity to minister to them and show them God's love - even as a family. Most are amazed when they walk in, see 2 boys working on home school, see 2 3-yr olds doing blanket time, and the only thing Becky is having to restrain is the dog (who can be a little overprotective at times). With all that is going on, we still have a peaceful household (ok - it can get a little loud with 5 boys - but it is a joyful noise!)
- Medicaid - we have Medicaid coverage from Dec 1, 2007 through Feb. 29, 2008. But this doesn't cover the first 2 weeks Titus was born and in the hospital. We have applied for retroactive coverage - this is mainly for assistance on one bill, but the bill is $1500 and we would love to have some Medicaid coverage on it. At the same time, we are in the midst of filling out other applications for continued coverage. Dealing with all the forms and phone calls can be a full-time job (I spent 45 minutes today being sent to 4 different phone numbers and people before I finallly found someone who could answer my question). There are times I think it would be easier to hang up and just pay the bills, but then I get the bills and decide that I can sit on hold for another 45 minutes.
- Tranforming Your World - our church has an awesome ministry opportunity on Sunday, April 27. The church is leaving the building and getting out in the community (ain't that an awesome idea!). Our class is going to take food to the NICU and PICU at Medical City Dallas and pray with families in the waiting room. The director of the class I teach (Scott & Jill Dillashaw) have spent as much time at Medical City with their children as we have with Titus - and we thought it would be an awesome opportunity to give back to other families who are going through what we have been through. Please pray that God will use that morning to minister to families who are going through some hard times with their children. While we are spending time with the parents, our kids are going to be making cards for the kids in the hospital.
One last thought - so many of you come up (or write or call) and let us know that your children continue to pray for Titus everyday. Please tell your children how thankful we are for them and that God hears their prayers and He is answering them in a mighty way. I know some kids may think when they hear about today's report that God may not be hearing their prayers - but assure them that He is. We serve a Mighty God who is in Control!
Wednesday, April 2, 2008
A Father's Love
Titus had surgery this yesterday morning and he is being released this morning to come home. Praise the Lord! They had told us it would only be one night in the hospital, but generally with Titus, an overnight procedure turns into a week-long stay. We are thrilled beyond words that he can come home today. He is doing fantastic and had a good night last night.
The doctors performed several procedures on him yesterday. Dr. Peters, the ENT, cleaned out his ears, drained all the fluid, put in tubes, and then the did the ABR to test his hearing. The results from the ABR were consistent with the test results back in December - he has profound hearing loss in both ears.
Dr. Genecov, the cranio-facial surgeon, then removed the jaw distraction devices (and of course, we asked to keep them!). He was pleased with his jaw and bone growth. There was a little bit of infection that had set in on one side of his jaw, so he cleaned that up. But Dr. Genecov mentioned that his lungs were still a bit stiff - and stated the RSV really did a number on his lungs - so we will be keeping him on oxygen when we come home.
It was a bit surreal to walk back into the PICU after spending 33 days here in Jan/Feb. But, it was also comforting to know most of the nurses, respiratory therapists, physician assistants, and doctors. They have all been stopping by to check on Titus - and all comment on how much he's grown and how good he looks. We are so thankful for the caring medical staff here at Medical City and their passion/concern for Titus.
When Becky and I were married, Becky states she learned about a love of choice - and everyday she made the choice to love me. I'm thankful that she does - and that God has done the same. God's mercies are new every morning, and He continues to love me each day.
When Aidan, our oldest, we born 11 years ago, I learned Father's love - a love that was so overpowering for such a tiny, helpless infant. And as he has grown, I've learned how that father's love means that I discipline and train my son so that he will grow into the man that he is suppose to be. And, the same goes with God, He disciplines the son that He loves.
When we adopted Tucker and Cade, I learned the love of an adoptive father - to love a child not of my blood, but of my heart; to love a child that didn't immediately love me back; to love a child that was chosen to be part of my family. And, as I stood in front of the judge the day we finalized their adoption, and the judge asked me "will you love this child forever - because what you are doing is irrevocable", I realized that yes, I will love this child forever - and the same goes with God's love. His love for me is irrevocable and He promises to love me forever.
And now, with Titus, a child born with so many defects, I've learned a love that overlooks the faults and loves the child. When we were in the NICU back in January, one of the nurses described the babies as "broken babies". I didn't care for the term much at first, but since have come to embrace it. Because I've learned that we are all broken. We all have faults, we all have issues, we all have handicaps that need constant care, attention, and sometimes intensive surgery and therapy. My love for Titus over looks the defects, the brokenness, the handicaps. I see my son, my little treasure in a jar of clay - so fragile, and yet so beautiful. And, I realize that God sees me the same way - His love for me overlooks my faults and He provides healing in only the way that He can.
As it says in 2 Cor. 4 "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. . . Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Please pray for these things this week.
The doctors performed several procedures on him yesterday. Dr. Peters, the ENT, cleaned out his ears, drained all the fluid, put in tubes, and then the did the ABR to test his hearing. The results from the ABR were consistent with the test results back in December - he has profound hearing loss in both ears.
Dr. Genecov, the cranio-facial surgeon, then removed the jaw distraction devices (and of course, we asked to keep them!). He was pleased with his jaw and bone growth. There was a little bit of infection that had set in on one side of his jaw, so he cleaned that up. But Dr. Genecov mentioned that his lungs were still a bit stiff - and stated the RSV really did a number on his lungs - so we will be keeping him on oxygen when we come home.
It was a bit surreal to walk back into the PICU after spending 33 days here in Jan/Feb. But, it was also comforting to know most of the nurses, respiratory therapists, physician assistants, and doctors. They have all been stopping by to check on Titus - and all comment on how much he's grown and how good he looks. We are so thankful for the caring medical staff here at Medical City and their passion/concern for Titus.
When Becky and I were married, Becky states she learned about a love of choice - and everyday she made the choice to love me. I'm thankful that she does - and that God has done the same. God's mercies are new every morning, and He continues to love me each day.
When Aidan, our oldest, we born 11 years ago, I learned Father's love - a love that was so overpowering for such a tiny, helpless infant. And as he has grown, I've learned how that father's love means that I discipline and train my son so that he will grow into the man that he is suppose to be. And, the same goes with God, He disciplines the son that He loves.
When we adopted Tucker and Cade, I learned the love of an adoptive father - to love a child not of my blood, but of my heart; to love a child that didn't immediately love me back; to love a child that was chosen to be part of my family. And, as I stood in front of the judge the day we finalized their adoption, and the judge asked me "will you love this child forever - because what you are doing is irrevocable", I realized that yes, I will love this child forever - and the same goes with God's love. His love for me is irrevocable and He promises to love me forever.
And now, with Titus, a child born with so many defects, I've learned a love that overlooks the faults and loves the child. When we were in the NICU back in January, one of the nurses described the babies as "broken babies". I didn't care for the term much at first, but since have come to embrace it. Because I've learned that we are all broken. We all have faults, we all have issues, we all have handicaps that need constant care, attention, and sometimes intensive surgery and therapy. My love for Titus over looks the defects, the brokenness, the handicaps. I see my son, my little treasure in a jar of clay - so fragile, and yet so beautiful. And, I realize that God sees me the same way - His love for me overlooks my faults and He provides healing in only the way that He can.
As it says in 2 Cor. 4 "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. . . Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Please pray for these things this week.
- Continued recovery from surgery, especially his breathing so that we can wean him off of oxygen
- Continued strength and growth before his next surgery on April 14
- Peace and Calm for Aidan, Noah, Tucker, and Cade as they stay with friends and family while Titus is recouping
- Rest for Paul & Becky
Wednesday, March 26, 2008
The Reality of Routine
Titus has been home from for 2 weeks now after his Glaucoma Surgery. He is doing good - and his eyes are clear and not swollen. It's still too early for them to test his vision and see if there is any permanent damage to his eyes. He is still on oxygen (at very low settings), and begins to struggle after an hour if we turn it down or off. The pulmonologist believes a small portion of his lung may have collapsed after the last surgery and it's just taking awhile to get back. We are becoming quite adept at carrying him around the house with this oxygen hose trailing behind and taking him to the doctor/church with portable tanks.
It is wonderful having him home, but also tiring. In the course of the day, Titus is fed every 3 hours (10-30 minutes), he has a nebullizer treatment 4 times today (15 minutes) followed by CPT (15 minutes - continuous percussive therapy - where we pound his back with this suction cup thing), another breathing treatment twice a day, eye drops 4 times a day, cleaning his jaw pins/g-tube 4 times a day, and general therapy on motion/movement throughout the day. We have reduced his feedings at night from 2 feedings to one - which is a huge blessing to only have one of us get up once a night. Becky slept all night last night for the first time in weeks. Since Titus is on oxygen, he is also on a pulseoximeter - which monitors his heart rate and oxygen saturation levels. But, if Titus is kicking his foot (where the monitor is attached) or squirming, the meter doesn't read, and the alarms go off. Imagine this happening about 20-30 times a day - generally at night! The doctor also suspects that Titus may have allergies which is causing the excess congestion. We have a suction machine to help with that several times a day if we feel it is affecting his breathing. The doctor is allowing us to give a very small dose of Benadryl to help with congestion. On top of the daily routine, Titus generally has 2-3 doctor's appointments during the week, which also means the schedule needs to be adjusted to fit within the time frame and drive to the doctor.
And, along the way, there are 2 other boys that need to be home schooled and 2 3-year olds that need structure and routine (and long naps in the afternoon). The reality of the routine can be overwhelming - and on certain days it is. The regimen that we follow cannot be deviated from and it's become an incredible lesson in discipline and obedience. Becky and I were discussing that it's easy to follow a routine if you know where it's headed, but it's difficult to consistently day-after-day follow the same routine and not know what the end result will be or see immediate results. We have to remind ourselves that everything is baby steps with Titus. And we received sage advice to celebrate those baby steps - he is not going to hit the same developmental milestones in the same time frames as other babies his age. Others have told us that the first year of child with special needs is the hardest. And, we can see how that can be true.
As I was contemplating our routine, I thought about Noah. It took Noah 120 years to build the ark - and he had no idea what the end result was really going to be. And yet, the Bible does not tell us much about that 120 year span. But for 120 years, Noah cut down trees, made lumber, prepared a foundation, built a boat, created barrels and barrels of pitch to coat the ark with . . . He did all the tiny tasks - day in and day out - to complete the plan exactly as God told him too. Along the way, he had 3 sons, raised those boys, watched them get married, maintained his marriage and livelihood and relationship with God, and still built the ark. I wonder - did Noah get tired of cutting down trees and picking out the splinters from his hands? Did he ever question why he was doing it? Did he ever get rid of the smell of pitch/tar? Did he ever take a day off? Did he ever question God's plan? It will be interested one day in Heaven to sit down with Noah and ask him those questions. But what I do know is what the Bible tells me "Noah did everything just as God commanded him." Noah must have been faithful with all the little tasks given him to be provided with such a large task. So, we carry on with the little tasks. They may be tiring and we may not know the results for weeks/months or even years to come, but I am reminded - Noah never stopped building that ark until it was complete.
The next few weeks will be busy with upcoming tests and surgeries. We wanted to let you know how to pray specifically for these things and also let you know how God is answering your prayers.
Please pray specifically for these items:
It is wonderful having him home, but also tiring. In the course of the day, Titus is fed every 3 hours (10-30 minutes), he has a nebullizer treatment 4 times today (15 minutes) followed by CPT (15 minutes - continuous percussive therapy - where we pound his back with this suction cup thing), another breathing treatment twice a day, eye drops 4 times a day, cleaning his jaw pins/g-tube 4 times a day, and general therapy on motion/movement throughout the day. We have reduced his feedings at night from 2 feedings to one - which is a huge blessing to only have one of us get up once a night. Becky slept all night last night for the first time in weeks. Since Titus is on oxygen, he is also on a pulseoximeter - which monitors his heart rate and oxygen saturation levels. But, if Titus is kicking his foot (where the monitor is attached) or squirming, the meter doesn't read, and the alarms go off. Imagine this happening about 20-30 times a day - generally at night! The doctor also suspects that Titus may have allergies which is causing the excess congestion. We have a suction machine to help with that several times a day if we feel it is affecting his breathing. The doctor is allowing us to give a very small dose of Benadryl to help with congestion. On top of the daily routine, Titus generally has 2-3 doctor's appointments during the week, which also means the schedule needs to be adjusted to fit within the time frame and drive to the doctor.
And, along the way, there are 2 other boys that need to be home schooled and 2 3-year olds that need structure and routine (and long naps in the afternoon). The reality of the routine can be overwhelming - and on certain days it is. The regimen that we follow cannot be deviated from and it's become an incredible lesson in discipline and obedience. Becky and I were discussing that it's easy to follow a routine if you know where it's headed, but it's difficult to consistently day-after-day follow the same routine and not know what the end result will be or see immediate results. We have to remind ourselves that everything is baby steps with Titus. And we received sage advice to celebrate those baby steps - he is not going to hit the same developmental milestones in the same time frames as other babies his age. Others have told us that the first year of child with special needs is the hardest. And, we can see how that can be true.
As I was contemplating our routine, I thought about Noah. It took Noah 120 years to build the ark - and he had no idea what the end result was really going to be. And yet, the Bible does not tell us much about that 120 year span. But for 120 years, Noah cut down trees, made lumber, prepared a foundation, built a boat, created barrels and barrels of pitch to coat the ark with . . . He did all the tiny tasks - day in and day out - to complete the plan exactly as God told him too. Along the way, he had 3 sons, raised those boys, watched them get married, maintained his marriage and livelihood and relationship with God, and still built the ark. I wonder - did Noah get tired of cutting down trees and picking out the splinters from his hands? Did he ever question why he was doing it? Did he ever get rid of the smell of pitch/tar? Did he ever take a day off? Did he ever question God's plan? It will be interested one day in Heaven to sit down with Noah and ask him those questions. But what I do know is what the Bible tells me "Noah did everything just as God commanded him." Noah must have been faithful with all the little tasks given him to be provided with such a large task. So, we carry on with the little tasks. They may be tiring and we may not know the results for weeks/months or even years to come, but I am reminded - Noah never stopped building that ark until it was complete.
The next few weeks will be busy with upcoming tests and surgeries. We wanted to let you know how to pray specifically for these things and also let you know how God is answering your prayers.
Please pray specifically for these items:
- Titus will have a swallow test done today. The doctors did an initial swallow test very early on and this is an update to see if he will aspirate (water/food/saliva) into his lungs versus down his esophagus into his stomach. If this is successful, they will start more therapy to introduce him to swallowing liquids. This is just one step to getting him off the feeding tube. Titus does great with a pacifier and he's very close to sucking his thumb (he gets those hands up to his mouth).
- Titus will have his follow-up jaw distraction surgery on April 2 at Medical City Dallas. This surgery will be to remove the devices put into his jaw that stretched it out. Specifically we pray he remains healthy prior to the surgery, that the bone that has been formed through the stretching will continue to harden, and for no complications after surgery from infection. Also, due to his breathing issues, we are praying that another round of anesthesia does not set him back. Dr. Genecov and his incredible staff at the International Cranio-Facial institute will be doing the surgery.
- When he goes in on April 2, we are also coordinating with Dr. Peters, the audiologist for a 2nd ABR test. When they did the initial test, Titus was not sedated, but for this test, they need him fully sedated. We have asked if they could coordinate this with his other surgery to only anesthetize him once instead of twice. Dr. Peters will be putting together the plan for his hearing (hearing aids to stimulate the ears - cochlear implants in the future), but we have had to delay these appointments due to the RSV and glaucoma surgery.
- Titus has a one-month follow-up/surgery in Houston with Dr. Feldman for his glaucoma on April 14. We will drive down to Houston for the weekend, have the appointment on Monday with surgery that afternoon. Again, we are praying for quick recovery for his eyes and his breathing.
We also want you to offer up praise and thanksgiving for the following answered prayers:
- Titus has Medicaid coverage up to Feb. 29, 2008. This should cover the remainder of bills we are responsible for after our primary insurance has paid. Since we have already met the yearly out-of-pocket max, we aren't too concerned about the remainder of the year since insurance will cover, but having Medicaid coverage for the initial 54 days in NICU and the 33 days with RSV will help tremendously. We are still working on full-time Medicaid coverage and SSI benefits, but for now, this is a step in the right direction.
- We have a new Suburban to carry everyone in. I had mentioned that we were looking for a vehicle that would allow for all of us to be in the car together. God provided in an incredible way allowing for us to purchase a car at auction through a dealer. So, we are the proud owners of a new (used) 2008 Tank (ok - it's a Chevy Suburban). The boys and I spent last Saturday re-organizing the garage so that we could park it there (with just 2 inches to spare). And last of all, please say a prayer of thanksgiving for my incredible wife who has a birthday on Friday, March 28. My life would not be complete without her and I treasure the day she was born (and the fact that she's SO much younger than me - she keeps me going).
Tuesday, March 11, 2008
Coming Home from Houston
Becky and Titus (and her mother, Elizabeth, and Aidan and Noah) will be coming home from Houston tomorrow after they see the glaucoma surgeon for a follow-up. It's been one week since Titus had surgery and his eyes look good, but he has stayed in Hermann's Children Hospital in Houston for the past week trying to get his breathing back to normal and get him weaned off of oxygen. He is on the very lowest dosage of oxygen they can provide and yet, when it's turned off, his oxygen saturation, starts to drop. It was decided today to send him home on oxygen and we can then work with our pulmonologist in Dallas to get him weaned off.
I drove to Houston this past weekend to see Becky and the boys. It had been a long and very quiet week at the house with everyone gone and it was great to see my wife and boys again. It is absolutely amazing the difference the surgery has made in Titus' eyes. We did not realize how swollen/bulging they were from the glaucoma until now.
But, going into surgery, Titus had some sinus drainage - either from allergies or cold - that was causing some congestion issues. Thankfully, it never went into his chest, but during the first 5 days of the hospital stay, the respiratory therapists were having to suction his airway out every few hours. On Sunday, this started to resolve itself (after a small dose of Benadryl). And, now, the major issue is weaning him off of oxygen and getting his feeds back to where he was prior to surgery. We also know that Titus will have surgery in 3 weeks to remove the jaw distraction devices, so we know we could easily have the same issues with weaning him off of oxygen again. But fortunately, we will be in Dallas with our team of doctors that are very familiar with him.
Please pray for the following:
I drove to Houston this past weekend to see Becky and the boys. It had been a long and very quiet week at the house with everyone gone and it was great to see my wife and boys again. It is absolutely amazing the difference the surgery has made in Titus' eyes. We did not realize how swollen/bulging they were from the glaucoma until now.
But, going into surgery, Titus had some sinus drainage - either from allergies or cold - that was causing some congestion issues. Thankfully, it never went into his chest, but during the first 5 days of the hospital stay, the respiratory therapists were having to suction his airway out every few hours. On Sunday, this started to resolve itself (after a small dose of Benadryl). And, now, the major issue is weaning him off of oxygen and getting his feeds back to where he was prior to surgery. We also know that Titus will have surgery in 3 weeks to remove the jaw distraction devices, so we know we could easily have the same issues with weaning him off of oxygen again. But fortunately, we will be in Dallas with our team of doctors that are very familiar with him.
Please pray for the following:
- Rest for Becky and Elizabeth tonight
- Safety in traveling back to Dallas - it's about a 4 hour 20 minute trip
- Titus oxygen levels and breathing will return to normal levels without having to supplement with oxygen
- All at-home supplies for oxygen will be delivered in a timely manner
- Strength and continued healing for Titus - he will have his 5th surgery next month and needs to maintain his health before going back in again
- Thursday's appointment in Dallas with our pulmonologist - that he will provide the techniques and treatment necessary to get Titus off of oxygen
- Adjustment as we get back to our routine at home - Paul has to travel to Atlanta on Thursday for a one-day meeting, but thankfully, the weekend is close.
And, we are forever grateful for dear friends, Mike and Jody Krogstad from Lake Jackson, who have kept Aidan and Noah for the past week, kept them going on school, brought them up to the hospital, and provided such incredible support. We are also so very thankful for my parents, Lou and Nolon Daily, who have kept Tucker and Cade (2 VERY active 3 year olds) for the last week. We are also thankful that Becky's mom, Elizabeth Temples, was able to make the trip to Houston with Becky and provide 24/7 care and support for Becky and Titus. And, for new friends, Suzy Gidden and Nan Grantham, who brought food/snacks up to the hospital. It was also a blessing to have Cathy Blue and April/Stirling Vineyard come up to visit during out stay in Houston. And, we were so blessed with the incredible doctors/nurses/respiratory therapists that we had at Hermann Children's Hospital. In your prayers, please thank the Lord for the incredible blessing of these people and ask for God's continued blessing to flow down on them.
Wednesday, March 5, 2008
Speedy Recovery
As mentioned yesterday, Becky and Titus flew to Houston yesterday afternoon. Dr. Feldman immediately saw them upon arrival, checked Titus into the hospital within the next hour and surgery commenced immediately. Titus was out of surgery at 11:00pm.
I just got off the phone with Becky after Dr. Feldman stopped by to review his progress. He is extremely pleased with how the surgery went and how Titus is responding. His eyes look good and they will follow-up with another visit next week.
Titus was pretty dehydrated by the time they got him to surgery last night, so they pumped him full of fluids in addition to the anesthesia. Going into surgery, Titus has had some drainage from a cold although it has not gone into his lungs/chest. But, he is full of fluids and that's hampering his breathing a bit. He continues to improve each hour and as I remind Becky, it's not even been 24 hours since he had a 3 hour surgery. So, as soon as they feel comfortable with his breathing, they will release him from the hospital, which we suspect will be tomorow. Becky and Titus will travel back to Houston next week for a follow-up.
Our sweet friend, Anne Marie sent us this verse this morning - and how appropriate it is.
Isaiah 58:8-9
Then your light will break forth like the dawn, and your recovery will speedily spring forth; then your righteousness will go before you, and the glory of the LORD will be your rear guard.
Then you will call, and the LORD will answer; you will cry for help, and he will say: Here am I.
It is absolutely amazing to think that Becky received a call at 10am yesterday saying a doctor in Houston could see us if we could get there that afternoon, and less than 12 hours later, not only had the doctor seen us, but he had Titus in surgery - talk about "speedily springing forth recovery". God knew and had the perfect surgeon picked out for Titus - one that was willing to start a 3 hour surgery at 8pm. This surgeon is also leaving town on Thursday to go to a conference, and is seeing 55 patients today, and yet he found time for Titus.
I thank God that He works in the details.
I thank God that He is in the business of speedy recovery.
I thank God that He has my back (he's my rear guard).
I thank God that He answers when I cry out for help.
I thank God for friends who love us, encourage us, and lift us up in prayer.
I thank God for a surgeon, Dr. Feldman, who was willing to work way into the night to help my son - I am so humbled by his commitment.
Pleas pray for the following:
I just got off the phone with Becky after Dr. Feldman stopped by to review his progress. He is extremely pleased with how the surgery went and how Titus is responding. His eyes look good and they will follow-up with another visit next week.
Titus was pretty dehydrated by the time they got him to surgery last night, so they pumped him full of fluids in addition to the anesthesia. Going into surgery, Titus has had some drainage from a cold although it has not gone into his lungs/chest. But, he is full of fluids and that's hampering his breathing a bit. He continues to improve each hour and as I remind Becky, it's not even been 24 hours since he had a 3 hour surgery. So, as soon as they feel comfortable with his breathing, they will release him from the hospital, which we suspect will be tomorow. Becky and Titus will travel back to Houston next week for a follow-up.
Our sweet friend, Anne Marie sent us this verse this morning - and how appropriate it is.
Isaiah 58:8-9
Then your light will break forth like the dawn, and your recovery will speedily spring forth; then your righteousness will go before you, and the glory of the LORD will be your rear guard.
Then you will call, and the LORD will answer; you will cry for help, and he will say: Here am I.
It is absolutely amazing to think that Becky received a call at 10am yesterday saying a doctor in Houston could see us if we could get there that afternoon, and less than 12 hours later, not only had the doctor seen us, but he had Titus in surgery - talk about "speedily springing forth recovery". God knew and had the perfect surgeon picked out for Titus - one that was willing to start a 3 hour surgery at 8pm. This surgeon is also leaving town on Thursday to go to a conference, and is seeing 55 patients today, and yet he found time for Titus.
I thank God that He works in the details.
I thank God that He is in the business of speedy recovery.
I thank God that He has my back (he's my rear guard).
I thank God that He answers when I cry out for help.
I thank God for friends who love us, encourage us, and lift us up in prayer.
I thank God for a surgeon, Dr. Feldman, who was willing to work way into the night to help my son - I am so humbled by his commitment.
Pleas pray for the following:
- Continued healing and strength for Titus - especially his breathing
- Rest for Becky and her mom - they need some sleep before they attempt to drive home from Houston
- Comfort and peace for the boys: Aidan and Noah are in Houston with Becky (staying at the K's), Tucker and Cade are in town (staying with the D's - and being spoiled rotten I'm sure).
Tuesday, March 4, 2008
Off to Houston
I apologize for sending 2 updates back-to-back, but based on the recent turn of events, I am asking for you prayers.
As mentioned in the previous email, they suspect Titus has congenital glaucoma. Dr. Leffler, the pediatric ophthalmologist says "suspects" because he was not able to anesthetize Titus for the exam to confirm the exact pressure levels of the eye - BUT, the pressure levels were extremely high so the "suspect" is probably more a confirmed. Since prolonged pressure can cause permanent damage, it was urgent to move quickly to resolve.
There are only 2 pediatric glaucoma specialists in Dallas: one who does not take insurance and requires cash payment up front and the other who could not see Titus for a week-and-a-half and would only do one eye at a time. From discussions with Dr. Leffler, he felt this was serious enough not to wait another week. Becky began contacting/researching doctors in Houston yesterday afternoon. Dr. Leffler talked with the doctor in Houston and provided all the records and medical history.
This morning, Dr. Feldman in Houston called to state he could see Titus this afternoon - with possible surgery tonight or in the morning. So, as I am typing this email, Becky is boarding a Southwest Flight with Titus to fly to Houston. Jody Krogstad will pick her up in Houston and take her to the doctor. Becky's mom, Elizabeth Temples, is driving down to Houston this afternoon with Aidan and Noah. Our dear friends, Marti & David Dunton will be taking care of Tucker and Cade for the next few days and then my parents, Nolon & Lou Daily will take them. I will be taking care of Quita when not at work (I know a couple of you were thinking - what's Paul gonna do?)
Please pray for these items:
As mentioned in the previous email, they suspect Titus has congenital glaucoma. Dr. Leffler, the pediatric ophthalmologist says "suspects" because he was not able to anesthetize Titus for the exam to confirm the exact pressure levels of the eye - BUT, the pressure levels were extremely high so the "suspect" is probably more a confirmed. Since prolonged pressure can cause permanent damage, it was urgent to move quickly to resolve.
There are only 2 pediatric glaucoma specialists in Dallas: one who does not take insurance and requires cash payment up front and the other who could not see Titus for a week-and-a-half and would only do one eye at a time. From discussions with Dr. Leffler, he felt this was serious enough not to wait another week. Becky began contacting/researching doctors in Houston yesterday afternoon. Dr. Leffler talked with the doctor in Houston and provided all the records and medical history.
This morning, Dr. Feldman in Houston called to state he could see Titus this afternoon - with possible surgery tonight or in the morning. So, as I am typing this email, Becky is boarding a Southwest Flight with Titus to fly to Houston. Jody Krogstad will pick her up in Houston and take her to the doctor. Becky's mom, Elizabeth Temples, is driving down to Houston this afternoon with Aidan and Noah. Our dear friends, Marti & David Dunton will be taking care of Tucker and Cade for the next few days and then my parents, Nolon & Lou Daily will take them. I will be taking care of Quita when not at work (I know a couple of you were thinking - what's Paul gonna do?)
Please pray for these items:
- Titus and Becky will have a smooth and uneventful flight to Houston and that it arrives on time - although a short flight, no one likes to sit next to a upset baby.
- Dr Feldman will be able to examine Titus and quickly diagnose the best treatment to take.
Surgery will be scheduled and conducted with no complications. From what I know - there are 2 types of surgery they can do, but in a nutshell, the canal in the eye that allows for fluid to drain from the eyeball is not there. The surgery builds the canal, allowing for fluid to drain normally (and therefore relieving the pressure). The surgery is a 3-hour surgery. - Quick recovery for Titus
- Comfort and peace for Becky and the boys as they stay in Houston
- Comfort and peace for Tucker and Cade as they stay with friends and family
- Becky's GEMS group tonight - Paul is going to speak in Becky's absence for her GEMS group tonight (and he promises it will be awesome, but he will not take any questions on breast-feeding or potty-training. )
Wednesday, January 30, 2008
Surgery Moved to TODAY
Since Saturday, we have been waiting for Dr. Renard, the pediatric surgeon, to come by and schedule the Nissen fundoplication surgery for Titus. We didn't expect him to show up on Sunday, but either Becky or I have spent a lot of time at the hospital the last two days waiting for him. The good news is that we have one of the best pediatric surgeons around - the bad news is, when your the best, your in a lot of demand.
Last night, I left the hospital at 7pm during shift change. I was 1/2 way home when the pediatrician called to let me know that Dr. Renard was on the floor doing a procedure on another patient and would be stopping by Titus room in the next 10-15 minutes. I u-turned and broke all land-speed records to get back to the hospital in time. Dr. Renard had already placed Titus on his surgery schedule (thankfully) and we learned this morning that surgery was scheduled for Thursday at 3pm.
But as we know, people pray, God hears, and mountains move. This morning, Dr. Renard called and told his staff to move everything on Thursday to TODAY. So, Titus will have his nissen surgery in just a few hours.
Titus is breathing over the vent (which is good - it's turned down very low), his blood gasses are good, and his lungs are clear. After surgery, they will observe and then extubate him off the vent (hopefully in the next 24 hours). We do not have a timeframe of when he will be able to come home, but it should be soon as long as he remains healthy.
As I stated previously, the last 2 weeks have been hard. Yesterday, I broke down in tears every time I was driving away from the hospital. As I sobbed in my car and cried out to God, I truly again felt so alone, so despondent, so broken. I hate seeing my son lying there in a bed, with so many tubes and wires that I can't hold him, and there's nothing that I can do to make it better.
And today, hearing this news, I have hope again, I have joy, I feel like we are back on the path. God is good, and as someone told me (or wrote in a poem, or cross-stitched in a pillow or put in a country-western song), "you can't appreciate the morning light if you haven't been through the dark of night."
Psalm 30:5 "weeping may remain for a night, but rejoicing comes in the morning."
Please pray for the following:
Last night, I left the hospital at 7pm during shift change. I was 1/2 way home when the pediatrician called to let me know that Dr. Renard was on the floor doing a procedure on another patient and would be stopping by Titus room in the next 10-15 minutes. I u-turned and broke all land-speed records to get back to the hospital in time. Dr. Renard had already placed Titus on his surgery schedule (thankfully) and we learned this morning that surgery was scheduled for Thursday at 3pm.
But as we know, people pray, God hears, and mountains move. This morning, Dr. Renard called and told his staff to move everything on Thursday to TODAY. So, Titus will have his nissen surgery in just a few hours.
Titus is breathing over the vent (which is good - it's turned down very low), his blood gasses are good, and his lungs are clear. After surgery, they will observe and then extubate him off the vent (hopefully in the next 24 hours). We do not have a timeframe of when he will be able to come home, but it should be soon as long as he remains healthy.
As I stated previously, the last 2 weeks have been hard. Yesterday, I broke down in tears every time I was driving away from the hospital. As I sobbed in my car and cried out to God, I truly again felt so alone, so despondent, so broken. I hate seeing my son lying there in a bed, with so many tubes and wires that I can't hold him, and there's nothing that I can do to make it better.
And today, hearing this news, I have hope again, I have joy, I feel like we are back on the path. God is good, and as someone told me (or wrote in a poem, or cross-stitched in a pillow or put in a country-western song), "you can't appreciate the morning light if you haven't been through the dark of night."
Psalm 30:5 "weeping may remain for a night, but rejoicing comes in the morning."
Please pray for the following:
- Titus will have a successful surgery and quick recovery
- Dr. Renard and his staff as they perform the surgery
- Titus breathing will remain strong and his body will be clear from all infections
- Becky and I for rest, good health for Aidan, Noah, Tucker, & Cade
Monday, January 28, 2008
Fearfully and Wonderfully Made
Here is the latest news on Titus. We are still in the PICU at Medical City Children's Hospital (day 13 in the hospital). His RSV is clearing up and although the Respiratory Therapists still comes by every 3 hours for treatment, they are suctioning very little out of his lungs.
On Saturday, they decided to extubate Titus from the ventilator. They had been turning down the number of breaths the ventilator was giving Titus and he had picked up his breathing and all signs looked good to extubate (or pull the tube out). I showed up early Saturday morning to be there. They had reduced his sedation and he was fully alert and awake. It was so good to see him alert and looking around. He was also cranky - not liking the tube down his throat at all. After they pulled the tube out, he was still cranky, but breathing good. I got to hold him for about 30 minutes. This was the first time in 10 days I had gotten to hold him and although he was fussing most of that time, it was absolutely heaven to have my boy back in my arms. After Titus had been off the vent for an hour, they tested his blood gases, and unfortunately, his Carbon Dioxide count was still high - meaning he wasn't breathing deep enough to expel the CO2 from his system. To keep him from getting more distressed, the decided to immediately intubate him again. So, I kissed my son and laid him back into the arms of the nurse so they could prepare him for intubation and the ventilator.
The ENT doctor who did the intubation came out to discuss Titus' condition after they put him on the vent. Dr. Trone, the ENT, use a lighted fluoroscope during the intubation to examine his vocal box and esophagos. Both were extremely swollen due to reflux, which is why his breathing was not strong enough off the vent to expel the CO2. They have been giving Titus prevocet for the reflux, but that only deals with the acidity of the reflux and not the issue of reflux itself. Upon discussions with Dr. Trone and Dr. Genecov, the cranio-facial surgeon, the best course of action is for Titus to have a nissen fundoplucation surgery (sounds much worse than it is). This is very common with babies, especially those with a g-tube installed. This laproscopic surgery will prevent the reflux, therefore reduce the swelling, and allow Titus to get off the vent. The only other option is a tracheotomy, which we want to avoid. We have not talked with Dr. Renard, the pediatric surgeon, who will perform the surgery, but are praying that it is scheduled as soon as they can. From all indications, we are looking at 1-2 more weeks in the hospital.
So, Titus is back on the vent, sedated some (but not as heavily as before), resting, and now waiting for his 3rd surgery in 3 months.
As I have stated before, these past weeks have been hard. We've come to know every piece of equipment, the settings, what is "in the range" and "outside of the range", every medicine, and every beep/warning signal that goes off. We have gotten to know a whole new set of doctors and nurses and will always be grateful to them for the incredible care they provide our son. We so appreciate the staff who gently talks to Titus, pats him on the head, comforts him when we aren't there. They all know he cannot hear, and yet they all tell us how he responds to them talking to him. So, for us, we so appreciate when they talk to him and tell him what they are doing. It sounds so simple, but it means the world to us that they treat him like the little person that he is (even when he is so heavily sedated).
This week has been very hard on me personally. But as I was driving down to the hospital, I realized that nothing, NOTHING changes my love for Titus. And, this thought came to me. The Bible tells me that God the Father has adopted me as a son, and views me as perfect, without spot or blemish, because I've been washed in blood shed on the cross for my sins. I have always had a difficult time understanding how a father can view a son perfectly, when I know (as the son) how incredibly sinful I am.
And, then I realized, I view Titus as perfect. Yes, he has issues. Yes, he has lifelong challenges. Yes, he has physical deformities. And, I'm sure when he gets older, he will do things that test my patience (just like Aidan, Noah, Tucker & Cade do). Even though I can sit here and list (and spell) all the medical conditions, and I feel like I constantly reciting them to every new doctor/therapist/nurse that comes along, it doesnt matter. Titus is perfect in my eyes. He was perfectly made, he's perfectly my son. So, I'll take Psalm 139:14 and add my view: "I praise you because Titus is fearfully and wonderfully made". And, I now have some inkling of an idea how God can continue to love me and view me as sinless.
Please pray for these things this week:
On Saturday, they decided to extubate Titus from the ventilator. They had been turning down the number of breaths the ventilator was giving Titus and he had picked up his breathing and all signs looked good to extubate (or pull the tube out). I showed up early Saturday morning to be there. They had reduced his sedation and he was fully alert and awake. It was so good to see him alert and looking around. He was also cranky - not liking the tube down his throat at all. After they pulled the tube out, he was still cranky, but breathing good. I got to hold him for about 30 minutes. This was the first time in 10 days I had gotten to hold him and although he was fussing most of that time, it was absolutely heaven to have my boy back in my arms. After Titus had been off the vent for an hour, they tested his blood gases, and unfortunately, his Carbon Dioxide count was still high - meaning he wasn't breathing deep enough to expel the CO2 from his system. To keep him from getting more distressed, the decided to immediately intubate him again. So, I kissed my son and laid him back into the arms of the nurse so they could prepare him for intubation and the ventilator.
The ENT doctor who did the intubation came out to discuss Titus' condition after they put him on the vent. Dr. Trone, the ENT, use a lighted fluoroscope during the intubation to examine his vocal box and esophagos. Both were extremely swollen due to reflux, which is why his breathing was not strong enough off the vent to expel the CO2. They have been giving Titus prevocet for the reflux, but that only deals with the acidity of the reflux and not the issue of reflux itself. Upon discussions with Dr. Trone and Dr. Genecov, the cranio-facial surgeon, the best course of action is for Titus to have a nissen fundoplucation surgery (sounds much worse than it is). This is very common with babies, especially those with a g-tube installed. This laproscopic surgery will prevent the reflux, therefore reduce the swelling, and allow Titus to get off the vent. The only other option is a tracheotomy, which we want to avoid. We have not talked with Dr. Renard, the pediatric surgeon, who will perform the surgery, but are praying that it is scheduled as soon as they can. From all indications, we are looking at 1-2 more weeks in the hospital.
So, Titus is back on the vent, sedated some (but not as heavily as before), resting, and now waiting for his 3rd surgery in 3 months.
As I have stated before, these past weeks have been hard. We've come to know every piece of equipment, the settings, what is "in the range" and "outside of the range", every medicine, and every beep/warning signal that goes off. We have gotten to know a whole new set of doctors and nurses and will always be grateful to them for the incredible care they provide our son. We so appreciate the staff who gently talks to Titus, pats him on the head, comforts him when we aren't there. They all know he cannot hear, and yet they all tell us how he responds to them talking to him. So, for us, we so appreciate when they talk to him and tell him what they are doing. It sounds so simple, but it means the world to us that they treat him like the little person that he is (even when he is so heavily sedated).
This week has been very hard on me personally. But as I was driving down to the hospital, I realized that nothing, NOTHING changes my love for Titus. And, this thought came to me. The Bible tells me that God the Father has adopted me as a son, and views me as perfect, without spot or blemish, because I've been washed in blood shed on the cross for my sins. I have always had a difficult time understanding how a father can view a son perfectly, when I know (as the son) how incredibly sinful I am.
And, then I realized, I view Titus as perfect. Yes, he has issues. Yes, he has lifelong challenges. Yes, he has physical deformities. And, I'm sure when he gets older, he will do things that test my patience (just like Aidan, Noah, Tucker & Cade do). Even though I can sit here and list (and spell) all the medical conditions, and I feel like I constantly reciting them to every new doctor/therapist/nurse that comes along, it doesnt matter. Titus is perfect in my eyes. He was perfectly made, he's perfectly my son. So, I'll take Psalm 139:14 and add my view: "I praise you because Titus is fearfully and wonderfully made". And, I now have some inkling of an idea how God can continue to love me and view me as sinless.
Please pray for these things this week:
- Titus nissen surgery to be scheduled quickly
- Dr. Renard who will perform the surgery
- Titus to be free from RSV and any other infection (especially pneumonia). He doesn't have it, but they are constantly watching him for it.
- The swelling in his voice box, epiglottis, and esophagus to go down and return to normal.
- Titus breathing and heart-rate to remain strong.
- Becky and I for continued strength and rest. We are tired, but we persevere.
- Aidan's 11th birthday was last Friday - and he is such a joy and help to us. If you see him, please wish him a belated Happy Birthday and lift him up in prayer as he continues to grow in wisdom and stature.
- Continued good health for Aidan, Noah, Tucker, & Cade - we need them healthy too.
Thursday, January 3, 2008
It's a Happy New Year!
Thank you! Thank you! THANK YOU for all the prayers this past week. Titus is doing great now that the anti-biotics have kicked in. We are on day 4 of a 7 day treatment and Titus is back to his old self - alert and happy. Right now they anticipate maybe next Tues/Wednesday before he can go home (but I will believe it when I place him in his crib at home).
They have also prepared us that infection is very common after this type of surgery and to be prepared for another infection in the next 10 weeks before they take the jaw device out. Just knowing that helps us to be better prepared (of course, it would have helped to have known that a few weeks ago - but I must have missed that detail in the 5-page medical release I signed for surgery). We also talked with friends of ours who had the same surgery with their daughter (same surgeon) and they experienced the same things.
I will say though, last Monday was probably one of the worst days we had gone through besides the days after he was born. It was just devastating to see him all hooked up and lifeless after he had made so much progress. Here it was, New Year's Eve, a time of celebration and I was full of pity and doubt. I sat at Little Caesars Pizza at 4pm waiting for my sausage pizza to be ready, puddled in a chair, doubting if my son would ever come home. But I came back to the statement I have shared with many of you before - "How big is your Faith - How BIG is your God!" And, again, I had to leave my son in God's hands.
Just so you know how God answers your prayers, let me share this with you. Titus has "curvy" veins (non-technical/non-medical term - but it's what the nurses have called it). Because of this, they generally have a difficult time putting an IV into him. We've seen them stick him more than 30 times trying to get an IV started (not an easy thing to watch over and over). And, once they get an IV into him, the vein has always collapsed after 1 day. When I asked you to pray for his IV this past Monday, God specifically answered that prayer for our little boy. They had no problems this time and the vein has not collapsed after 4 days. The nurses are amazed, but I know the reason why - our God is a God of details. And no prayer is too small for Him.
We are so thankful for the prayers that have kept us going. His breathing has improved dramatically and you can see how much his jaw has moved in the last 2 weeks. We are able to hold him again on our visits and do all the same things with him that we were doing before the infection. He's up to 7lbs, 4 oz. and was 7 weeks old yesterday. The nurses also comment on how well he communicates. He fusses/cries when he wants something and as soon as he gets their attention, he stops. He knows exactly what he is doing!
Blessings to all and Happy New Year!
They have also prepared us that infection is very common after this type of surgery and to be prepared for another infection in the next 10 weeks before they take the jaw device out. Just knowing that helps us to be better prepared (of course, it would have helped to have known that a few weeks ago - but I must have missed that detail in the 5-page medical release I signed for surgery). We also talked with friends of ours who had the same surgery with their daughter (same surgeon) and they experienced the same things.
I will say though, last Monday was probably one of the worst days we had gone through besides the days after he was born. It was just devastating to see him all hooked up and lifeless after he had made so much progress. Here it was, New Year's Eve, a time of celebration and I was full of pity and doubt. I sat at Little Caesars Pizza at 4pm waiting for my sausage pizza to be ready, puddled in a chair, doubting if my son would ever come home. But I came back to the statement I have shared with many of you before - "How big is your Faith - How BIG is your God!" And, again, I had to leave my son in God's hands.
Just so you know how God answers your prayers, let me share this with you. Titus has "curvy" veins (non-technical/non-medical term - but it's what the nurses have called it). Because of this, they generally have a difficult time putting an IV into him. We've seen them stick him more than 30 times trying to get an IV started (not an easy thing to watch over and over). And, once they get an IV into him, the vein has always collapsed after 1 day. When I asked you to pray for his IV this past Monday, God specifically answered that prayer for our little boy. They had no problems this time and the vein has not collapsed after 4 days. The nurses are amazed, but I know the reason why - our God is a God of details. And no prayer is too small for Him.
We are so thankful for the prayers that have kept us going. His breathing has improved dramatically and you can see how much his jaw has moved in the last 2 weeks. We are able to hold him again on our visits and do all the same things with him that we were doing before the infection. He's up to 7lbs, 4 oz. and was 7 weeks old yesterday. The nurses also comment on how well he communicates. He fusses/cries when he wants something and as soon as he gets their attention, he stops. He knows exactly what he is doing!
Blessings to all and Happy New Year!
Saturday, December 29, 2007
Going Home!
"I'm coming home, I've done my time . . . So Tie a Yellow Ribbon round the Old Oak Tree!"
Ok, forgive the 70's flashback (I know some of you still remember Tony Orlando and Dawn - even more, you remember their variety show! - and others of you weren't even born yet and are asking Tony who?), but that's the silly song going through my head when we heard the news that Titus is coming home on Sunday, December 30, unless there are any circumstances that happen today to prevent that.
Needless to say, we are in shock and disbelief that this day has arrived - you would think we would be better prepared. They had told us to expect 2-3 weeks after surgery, so when it was mentioned it would happen this soon, we kept questioning the doctors "are you sure?" But, they are sure. They have even taken all the monitors off of him and let us hold him several times this week without any monitors. I had forgotten how easy it is to hold a baby without having to negotiate 4-6 different wires and cables that tether you to the crib. Of course, I was still nervous about his oxygen levels and respiratory rate, but I soon relaxed and watched his face. It wasn't turning blue, so he was fine! As it turns out, I was the one who needed to relax.
Titus had done remarkable since surgery. After 1 week, you can tell his jaw has pushed out and his breathing has improved. It still has a long ways to go, but just to see this improvement after one week is great. Several of you have asked if Titus is in pain when we turn the screws. From observing him, he has no reaction when we do it, which leads me to believe it does not hurt him at all. Each turn pushes the jaw 1/2 mm which really is miniscule when you look at it. We turn once in the morning and once in the afternoon.
He is back up to full feedings and has regained the weight he lost those few days after surgery.
Titus has been sucking on a pacifier the past few weeks and today they started working with him to see if he would swallow a few drops. He did fine and took about 3cc's of milk. Now, that's still a tiny amount, but it's a start and we can start working with him several times a day to get him use to swallowing some milk. This will be one of the areas that we will be working on a lot over the next few months. We will still have his g-tube for feedings, but the goal is to get him to take his milk through the mouth and not through the g-tube. This could take all year, but it's one of the many areas we will be working on with him.
We also have recieved the list of appointments that need to be made for Titus over the next few months. Titus will have another surgery in a few months to remove the jaw distraction device (probably mid March). We also have meetings with the ENT to fit Titus for hearing aids and then plan the procedure for cochlear implants. We also have visits to Scottish Rite Hospital to begin the casting for his right foot which is turned. And, along the way, he will have his normal well visits with the pediatrician, and twice a week visits from the therapists at home. Becky will be busy coordinating these visits while homeschooling Aidan and Noah.
This morning, I kept repeating Prov. 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and He will direct your paths." The past 6 1/2 weeks have been an incredible lesson in learning to trust. I had to trust doctors I didn't know to do what was best, I had to trust nurses we hadn't met to take care at night when we weren't there. I had to trust surgeons as they wheeled my son away to surgery. But most of all, I had to trust God that he had plan and purpose. And, that I may not know the reason why today or for months to come, but for today, I have to TRUST. For a melancholy like me, trust is not always an easy thing. Maybe's it one of the reasons why I look to do things by myself since I trust myself. But to put my trust in God and in others is not any easy thing to do - and yet, as the verse states "trust in the Lord . . . lean not on your understanding." I pray for Titus that as he grows older and we recount these days back to him, he will see the journey of trust in the Lord - and he will learn to trust in Him.
Words are so hard to express our gratitude for all the prayers, emails, cards, and letters (especially from people we don't even know.) You have blessed us beyond measure. We have printed off all the emails and have put them in book for Titus.
For those who have taken care of my children - thank you. You provided much comfort and solace to Aidan, Noah, Tucker, and Cade when we couldn't be there.
For those of you who provided food - thank you. I know I have gained weight and our freezer is still full.
For those of you who cleaned our house and washed our clothes - thank you. I am truly humbled. Cleaning the house is generally my job and to let go and let someone else do this was really difficult for me. But to come home and have our house clean and clothes washed was such a blessing. BTW, I have finally found all my underwear and socks ( they were just put in a place we don't normally put them - but I was worried for a few days that someone had thorwn out all my underwear and socks).
Thanks again and Happy New Year!
Ok, forgive the 70's flashback (I know some of you still remember Tony Orlando and Dawn - even more, you remember their variety show! - and others of you weren't even born yet and are asking Tony who?), but that's the silly song going through my head when we heard the news that Titus is coming home on Sunday, December 30, unless there are any circumstances that happen today to prevent that.
Needless to say, we are in shock and disbelief that this day has arrived - you would think we would be better prepared. They had told us to expect 2-3 weeks after surgery, so when it was mentioned it would happen this soon, we kept questioning the doctors "are you sure?" But, they are sure. They have even taken all the monitors off of him and let us hold him several times this week without any monitors. I had forgotten how easy it is to hold a baby without having to negotiate 4-6 different wires and cables that tether you to the crib. Of course, I was still nervous about his oxygen levels and respiratory rate, but I soon relaxed and watched his face. It wasn't turning blue, so he was fine! As it turns out, I was the one who needed to relax.
Titus had done remarkable since surgery. After 1 week, you can tell his jaw has pushed out and his breathing has improved. It still has a long ways to go, but just to see this improvement after one week is great. Several of you have asked if Titus is in pain when we turn the screws. From observing him, he has no reaction when we do it, which leads me to believe it does not hurt him at all. Each turn pushes the jaw 1/2 mm which really is miniscule when you look at it. We turn once in the morning and once in the afternoon.
He is back up to full feedings and has regained the weight he lost those few days after surgery.
Titus has been sucking on a pacifier the past few weeks and today they started working with him to see if he would swallow a few drops. He did fine and took about 3cc's of milk. Now, that's still a tiny amount, but it's a start and we can start working with him several times a day to get him use to swallowing some milk. This will be one of the areas that we will be working on a lot over the next few months. We will still have his g-tube for feedings, but the goal is to get him to take his milk through the mouth and not through the g-tube. This could take all year, but it's one of the many areas we will be working on with him.
We also have recieved the list of appointments that need to be made for Titus over the next few months. Titus will have another surgery in a few months to remove the jaw distraction device (probably mid March). We also have meetings with the ENT to fit Titus for hearing aids and then plan the procedure for cochlear implants. We also have visits to Scottish Rite Hospital to begin the casting for his right foot which is turned. And, along the way, he will have his normal well visits with the pediatrician, and twice a week visits from the therapists at home. Becky will be busy coordinating these visits while homeschooling Aidan and Noah.
This morning, I kept repeating Prov. 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and He will direct your paths." The past 6 1/2 weeks have been an incredible lesson in learning to trust. I had to trust doctors I didn't know to do what was best, I had to trust nurses we hadn't met to take care at night when we weren't there. I had to trust surgeons as they wheeled my son away to surgery. But most of all, I had to trust God that he had plan and purpose. And, that I may not know the reason why today or for months to come, but for today, I have to TRUST. For a melancholy like me, trust is not always an easy thing. Maybe's it one of the reasons why I look to do things by myself since I trust myself. But to put my trust in God and in others is not any easy thing to do - and yet, as the verse states "trust in the Lord . . . lean not on your understanding." I pray for Titus that as he grows older and we recount these days back to him, he will see the journey of trust in the Lord - and he will learn to trust in Him.
Words are so hard to express our gratitude for all the prayers, emails, cards, and letters (especially from people we don't even know.) You have blessed us beyond measure. We have printed off all the emails and have put them in book for Titus.
For those who have taken care of my children - thank you. You provided much comfort and solace to Aidan, Noah, Tucker, and Cade when we couldn't be there.
For those of you who provided food - thank you. I know I have gained weight and our freezer is still full.
For those of you who cleaned our house and washed our clothes - thank you. I am truly humbled. Cleaning the house is generally my job and to let go and let someone else do this was really difficult for me. But to come home and have our house clean and clothes washed was such a blessing. BTW, I have finally found all my underwear and socks ( they were just put in a place we don't normally put them - but I was worried for a few days that someone had thorwn out all my underwear and socks).
Thanks again and Happy New Year!
Friday, December 21, 2007
Surgery Complete
Titus is out of surgery and everything looks good. The have to tape his ears up so they aren't irritated by the screws and between that and the after-affects of surgery, he's feeling a little puny. The are giving him some pain medicine but expect by tomorrow he should be fine - it's just hard to see him like this. Right now, he's resting peacefully.
The surgeon was able to push out his jaw 4 mm during the surgery which will already make an improvement in his breathing. He came out of surgery extubated and just has the regular canula for some oxygen. On Monday, they will teach us how to turn the screws and we will turn the screws a 1/2 turn in the morning and a 1/2 turn in the evening for the next 12 weeks. This will push his jaw out up to 3 centimeters. At the end of the 3 months, they will do another surgery to remove the screws.
This morning, right before surgery, Titus' g-tube came out. The g-tube is held in place inside his stomache with a small balloon inflated with saline. The balloon had ruptured and his g-tube fell out. The nurses had prepared for this and had ordered an extra g-tube that had just come in the day before. Two nurses and the doctors came in, examined Titus, prepped the g-tube and then the doctor stated, "let's let dad do this" - in which I promptly replied " let's let mom do it!" Becky took it and popped it in like a pro (and I stood several feet behind and applauded her and didn't pass out).
Thanks for the prayers today. After everything was over today, Becky and I both fell asleep in the chairs in his room. I think we all (including Titus) needed some rest.
The surgeon was able to push out his jaw 4 mm during the surgery which will already make an improvement in his breathing. He came out of surgery extubated and just has the regular canula for some oxygen. On Monday, they will teach us how to turn the screws and we will turn the screws a 1/2 turn in the morning and a 1/2 turn in the evening for the next 12 weeks. This will push his jaw out up to 3 centimeters. At the end of the 3 months, they will do another surgery to remove the screws.
This morning, right before surgery, Titus' g-tube came out. The g-tube is held in place inside his stomache with a small balloon inflated with saline. The balloon had ruptured and his g-tube fell out. The nurses had prepared for this and had ordered an extra g-tube that had just come in the day before. Two nurses and the doctors came in, examined Titus, prepped the g-tube and then the doctor stated, "let's let dad do this" - in which I promptly replied " let's let mom do it!" Becky took it and popped it in like a pro (and I stood several feet behind and applauded her and didn't pass out).
Thanks for the prayers today. After everything was over today, Becky and I both fell asleep in the chairs in his room. I think we all (including Titus) needed some rest.
Wednesday, December 19, 2007
Update
Titus is 5 weeks old today - and he weighed 6lbs 12 oz last night! WooHoo! He appears to be clear of infections and should be ready for surgery this Friday, Dec 21. Surgery is scheduled for 9am. Here's a recent pic of our beautiful boy!
Yesterday, the audiologist did an ABR test on Titus hearing. We have noticed that Titus does not seem to respond to sound or noises in the room. The test confirmed what we suspected. Titus has signficant hearing loss in both ears. Even though we suspected this, it was still hard to hear the news confirmed. But we trust in God's plan and know there are amazing things that can be done in this area for Titus.
After the audiologist left, and Becky and I stood there holding each other, we prayed over Titus' bed that God's will be done. The verse that kept coming up in my head was Josh 24:15 "choose for yourselves this day whom you will serve . . . But as for me and my household, we will serve the LORD." As I left the hospital, I kept telling myself "I choose today. I choose today".
After 5 weeks in the NICU and knowing we still have several more weeks there before coming home, and then looking forward knowing that 2008 will contain several more surgeries/procedures followed with a lot of therapy over the next years, I have come to realize this is a lesson in perseverance. Perseverance is so much more than patience. When we adopted Tucker, we had some delays in bringing home. When we accepted his referral in September, we thought he might be home prior to Christmas, but if not, at least in January. As things unfolded, we were not able to bring him home till April. At the time, the wait was horrible and gut-wrenching. We had a child on the other side of the world that we just wanted to bring home, but had to wait until all the legalalities were taken care of.
At the time, I thought we persevered - I now realize it was more just patience. With Titus, this is perseverance. But we persevere because we know it is what God has called us to. Oswald Chambers defines perseverance as this: Perseverance is more than endurance. It is endurance combined with absolute assurance and certainty that what we are looking for is going to happen. We know and trust that God has a wonderful plan for Titus and we choose today to serve the Lord and persever and not to give into fear and doubt. Our prayer today is Isaiah 26:3 “You will keep in perfect peace him whose mind is steadfast, because he trusts in you.” The only way we will be able to persevere is keeping our mind steadfast and our trust in God.
This week please pray for the following:
- Titus jaw distraction surgery on Friday, Dec 21 at 9am. We are also praying for Dr. Genecov and his team who are performing the surgery.
- Titus' recovery after surgery. Dr. Genecov hopes to return him after surgery extubated from the breathing machine used during surgery and with his breathing showing signs of improvement from the initial displacement of the jaw.
- Continued improvement of health for our family. We have all been struggling with coughs/infections of some manner over the last few weeks.
- Navigation of the Supplemental Social Security and Medicaid forms and completion of insurance claims. It is hard to find the time to spend on the phone (on hold) with these agencies, but these are necessary items that need to be completed in a timely manner.
Thanks again for all the notes/emails of encouragement, for the prayers, for the food, for the people who have even been cleaning our house, for our friends who have watched over the boys. This is so humbling and we are so grateful.
And a special thanks to our parents (Nolon & Lou Daily and Jerry & Elizabeth Temples) who are always there supporting us. Many of you know our parents and know how special they are. We couldn't ask for better parents or better grandparent to Aidan, Noah, Tucker, Cade, & Titus.
BTW, Nolon & Lou celebrated their 52nd wedding anniversary this week - thanks mom and dad for persevering and setting such a fine example.
Thursday, December 13, 2007
Surgery Rescheduled
Titus is a month old tomorrow. After 4 weeks in the NICU, he has made much progress from when he first came in. We haven't reallly had any "steps back" until this week, so although it initially caught us off guard, we realize that setbacks are to be expected in the NICU.
Titus was originally scheduled for jaw distraction surgery yesterday. When Dr. Genecov, the cranio-facial surgeon, stopped by on Tuesday to review the procedure with us, Titus' white blood cell count and temp was up. This indicated an infection. Further tests confirmed it, but they could not find exactly where the infection was. Nevertheless, surgery was postponed to make sure all signs of infection were gone. They started Titus on antibiotics immediately and he has responded well to them. He was also struggling with his oxygen levels, so they put a canula under his nose to provide oxygen. As of now, indicators looks good the infection has been taken care of, but they will keep him on antibiotics and oxygen for a few more days. To administer the antibiotics, they had to install an IV. Since the day Titus was born, they have had problems installing IVs - and it's truly painful to watch them stick him numerous times only to have the vein collapse.
Today they tried to install a PIC line IV but gave up after trying for over an hour. When we finally saw him, his little arms looked like a pincushion and he was wide-eyed and hungry. He settled down after a feeding and got some rest. But, since Titus will need a solid IV installed for them to administer antibiotics and pain medicine after his surgery, they are installing a broviac IV tonight. Dr. Renard, the pediatriac surgeon who took care of Titus during his g-tube surgery, is installing it as I type this email.
After the last two weeks of being able to hold him with only a few wires, it's been hard to see him go back to have more wires and oxygen tubes around, but we know it is for his good and only temporary.
The jaw distraction surgery is now scheduled for Friday, Dec. 21. I do not know the time yet, but will let you know as we get closer.
Becky and I went out to dinner last night on the way home from the hospital. We needed the time to just talk. We are tired, we miss our boys, we feel as if we shuttle them back and forth so much, and we feel so helpless for Titus. But we talked about the main verse that has resonated in my head "My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 12:9.
For my birthday last year, Becky and boys gave me a Noah Webster Dictionary from 1828. The beauty of a Noah Webster dictionary is that most of the definitions have Biblical references. Grace, has more than 20 explanations as defined by Webster. But some of them are:
the free, unmerited love and favor of God, the spring and source of all the benefits men receive by Him, favorable influence of God, divine influence or the influence of the spirit in renewing the heart and restraining from sin Christ's righteousness to the sinner, Favor, mercy, pardon
privilege.
And sufficient is defined as "enough to equal to the end proposed; adquate to wants; competent; qualified; fit"
So, taking this back to Becky and I sitting at dinner - we talked that God's grace (HIs free unmerited love, favor, mercy, pardon, privilege, benefits) is sufficient (enough, adequate, competent). In our microwave, super-size-it world where we want it NOW and we want it BIG, I have to realize God is sufficient. He's all I need, He's ENOUGH, more than adequate, and entirely competent. And as I struggle with the 'I Want Titus Home NOW and I want my life back to normal NOW' thoughts, I'm reminded over and over 'God's Grace is Sufficient'. And even more, that His power is made perfect in my weakness. I hate being weak - as much as I want to rush in and fix everything, this is a situation where my talents can't help Titus. I'm totally helpless as I watch the doctors/nurses work on my son. Yes, I can pray, but when you stand there watching a team work on your son, you want to do something. It's my son and I want to help him, but I can't. So instead, I sing.
Jesus loves me, this I know
For the Bible tells me so.
Little ones to Him belong.They are WEAK, but He is Strong.
Yes, Jesus loves Me.
Yes, Jesus loves Titus.
Yes, Jesus love me,
The Bible tells me so.
Thank you for bearing with me through my long emails. Writing is therapy for me (Hello, my name is Paul, I write a lot. It's been 4 days since my last wordy email).
Please pray for this things this week:
- Titus Broviac IV can be installed with no problems and function completely for the all his needs the next few weeks
- Titus body will be healed from all infection so that surgery will go as scheduled next Friday
- Titus breathing will stay strong
- Titus will continue to gain weight (he's over 6lb 3 oz - and getting a little chub on his skinny legs).
- Our health - Aidan, Cade, Tucker, and Paul are all struggling with coughs, allergies or asthma
- Becky's strength as she coordinates schedules, hospital visits
Wednesday, December 12, 2007
Surgery Postponed
They have postponed Titus' jaw distraction surgery at least one day. We do not have a new surgery time, but they were trying to schedule for Thursday, Dec. 13. We will let you know the exact time once we hear.
Titus had a slightly elevated white blood count and his temp has been a little higher (not a fever), so to be sure he's not fighting an infection, they are giving him some antibiotics and the surgeon, Dr. Genecov, wanted the antibiotics to be in his system at least 24 hours, therefore the delay.
Titus had a slightly elevated white blood count and his temp has been a little higher (not a fever), so to be sure he's not fighting an infection, they are giving him some antibiotics and the surgeon, Dr. Genecov, wanted the antibiotics to be in his system at least 24 hours, therefore the delay.
Surgery
Thank you for the prayers last week - Dr. Genecov stopped by to examine Titus while Becky last Thursday. While observing Titus, he saw the "dips" in his breathing that were causing the concern of the other doctors and agreed to do the jaw distraction surgery. Surgery will be 8:30am, Wednesday, Dec. 12, 2007. During the surgery, they will break Titus' jaw and insert screws. The screws will be turned every few days to push his jaw out (for those of you who had braces, think of the tightening/turning you had to do). Surgery will be scheduled at a later date to remove the screws after the bone has grown around the screws.
After surgery, Titus will stay in the NICU for several more weeks to stabilize. If Titus responds like he did from his last surgery, it will take several days for all the anesthesia to work it's way out of his system and for them to begin full feedings again. This also means that we are not able to hold him those first few days after surgery. We are better prepared for what to expect after surgery than we were last week. Nevertheless, it is tough to see your child wheeled away and to come back hooked up to a breathing machine. We are thankful that his nurse next Wednesday will be Michelle. She has been with us the majority of the time in the NICU and has become one of the family. All of the nurses and doctors have been stellar, but Michelle has a way with Titus (and with training us on how to care for him). Titus has been gaining weight slowly, so we are really praying that over the next few days, he can bulk up some prior to surgery. He was at 5lb 13oz last night and they are supplementing his feeding with extra calories.
We also received the results back from the "high-definition" chromosone test. They reviewed all the chromosones/DNA genomes to see if any were missing or if there were any other anomolies in his DNA. It all came back negative which means they could not find anything out of the ordinary, wrong, missing, etc. Titus does have an audiologist appt scheduled over the next few weeks. The results from the initial hearing tests are not satisfactory, so they are going to due a deeper level test.
Becky stated this week that "this isn't what how we had planned on spending our December". It wasn't stated in a negative way, but more of a matter-of-fact way. It really made me think on the verse "Many are the plans in a man's heart, but it is the LORD's purpose that prevails. Prov. 19:21". This journey has truly taught us to "Seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Matt 6:33-34"
What I have come to realize is we "seek first" for today. I can't "seek" for tomorrow or for yesterday - it's my calling to "seek" today. And, I realize that if God had told me His exclusive plans for next week, I would probably forget, mix-up the details, or run away. It's probably the same reason the angels declared to the shepherds "TODAY, in the city of David, a Saviour has been born" - if the angels had stated "Next Thursday at 8:12pm, the Messiah will be born", I'm pretty sure that most of the shepherds (being men) would have forgotten, mixed up the details, or not shown up because something else came up to do. I'm not bashing my gender, just realizing that's what we guys do (as I'm often gently reminded). So, for today, I SEEK to listen, I SEEK to obey, I SEEK to know the Lord's plan and not my own.
Our specific prayer requests this week are:
After surgery, Titus will stay in the NICU for several more weeks to stabilize. If Titus responds like he did from his last surgery, it will take several days for all the anesthesia to work it's way out of his system and for them to begin full feedings again. This also means that we are not able to hold him those first few days after surgery. We are better prepared for what to expect after surgery than we were last week. Nevertheless, it is tough to see your child wheeled away and to come back hooked up to a breathing machine. We are thankful that his nurse next Wednesday will be Michelle. She has been with us the majority of the time in the NICU and has become one of the family. All of the nurses and doctors have been stellar, but Michelle has a way with Titus (and with training us on how to care for him). Titus has been gaining weight slowly, so we are really praying that over the next few days, he can bulk up some prior to surgery. He was at 5lb 13oz last night and they are supplementing his feeding with extra calories.
We also received the results back from the "high-definition" chromosone test. They reviewed all the chromosones/DNA genomes to see if any were missing or if there were any other anomolies in his DNA. It all came back negative which means they could not find anything out of the ordinary, wrong, missing, etc. Titus does have an audiologist appt scheduled over the next few weeks. The results from the initial hearing tests are not satisfactory, so they are going to due a deeper level test.
Becky stated this week that "this isn't what how we had planned on spending our December". It wasn't stated in a negative way, but more of a matter-of-fact way. It really made me think on the verse "Many are the plans in a man's heart, but it is the LORD's purpose that prevails. Prov. 19:21". This journey has truly taught us to "Seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Matt 6:33-34"
What I have come to realize is we "seek first" for today. I can't "seek" for tomorrow or for yesterday - it's my calling to "seek" today. And, I realize that if God had told me His exclusive plans for next week, I would probably forget, mix-up the details, or run away. It's probably the same reason the angels declared to the shepherds "TODAY, in the city of David, a Saviour has been born" - if the angels had stated "Next Thursday at 8:12pm, the Messiah will be born", I'm pretty sure that most of the shepherds (being men) would have forgotten, mixed up the details, or not shown up because something else came up to do. I'm not bashing my gender, just realizing that's what we guys do (as I'm often gently reminded). So, for today, I SEEK to listen, I SEEK to obey, I SEEK to know the Lord's plan and not my own.
Our specific prayer requests this week are:
- Guidance and directions for Dr. Genecov, the anesthesiologist, and the entire supporting staff of nurses/therapists during surgery on Wednesday.
- Titus will continue to put on weight
- Nurses, respiratory therapists, and doctors on call this week for Titus. They really light up when we tell them they are being prayed for today.
- Continued health for our family
- Becky's GEMS group meeting on Tuesday evening - our dear friend Jody Krogstad is driving up from Houston to speak. It is so hard to express our gratitude for your prayers.
The last few weeks have been such a testimony to us as a family on how the body of Christ works together. Your emails, phone calls, food, hospital visits, taking care of the boys while we are at the hospital - well, it's just been overwhelming. For the boys, this is such a memorial for them to look back and see how God answered prayers. For Titus, as he gets older, it will be such a story to tell of his birth.
Thursday, November 29, 2007
Out of Surgery
Just a quick note, Titus is out of surgery and everything went smoothly. Surgery was delayed a few hours and it took them a while to get him anesthesized due to his airway, but all things went smoothly. We should be able to go back and see him in the next hour or so.
Thanks again for the prayers, emails and calls. We have been sitting here reading through them while Titus was in surgery.
Thanks for being a blessing!
Thanks again for the prayers, emails and calls. We have been sitting here reading through them while Titus was in surgery.
Thanks for being a blessing!
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