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:

• 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).

Separation

Today marks 32 days back in the hospital. Titus has been back in a regular hospital room for the last 8 days. Which means that Becky has been staying at the hospital 24/7 for the last 8 days. She did come home 1 night last week to sleep while her mom stayed with Titus, but other than a few trips to a friends house to take a shower, she has been by his side the entire time. As you can imagine, she's exhausted from the constant stream of nurses and respiratory therapists that come in continually through the night.

Titus is doing good. He is back to full feeds (70cc) every 3 hours, he is off all methadone and antibiotics, and for the last 2 days has been off oxygen. He was desatted a bit yesterday, so they put him back on oxygen through the night to help him out, but it's coming back off today. He continues to run an erratic low-grade fever which is stumping the doctors. It's not high and goes back down after a few hours.

As it stands today, he MAY come home tomorrow. But we will have to see how today goes and how the doctor feels about things in the morning.

The other factor in the equation is that Tucker has had the flu this week and Cade has shown symptoms. We have all been on Tamiflu since Thursday. Tucker and Cade have been staying at my parents or Becky's parents for the last several days to keep them away from the house, Aidan and Noah, and me. I am also exhibiting some symptoms, but am taking my Tamiflu and spending the weekend in bed (which is not much help to Becky).

In my drives back and forth from the hospital this week, my thoughts have drifted to separation. Becky and I have talked and we are tired of being apart from each other, from our boys, from our home. Our marriage and our family was not designed to be in 3 different places. Becky and I really guard our family time together and work hard to make sure we have meals together as a family, have regular family time, and focus on our family identity. As a result, all of us (boys included) are struggling with the being apart from each other.

Separation hurts - I don't like sleeping in an empty bed - I miss my wife next to me (and she says she misses my snoring). Separation is hard, separation just plain old stinks - especially when there is nothing you can do about it but endure. We know it's temporary, but right now, that doesn;t soothe over the fact that we long to be back together again under one roof, sharing our meals together, hearing our boys chatter and laugh, tucking them in at night, getting constant hugs and kisses.

And as I thought about it, I wondered, does my separation from God bother him? When I ignore him, don't spend time with him, try to do everything myself instead of rely upon his ultimate power - does my so-called "independence" hurt God? Because, that's not what I was designed for - God didn't create me to live my life for myself - but to live my life for Him. God didn't design marriage to be 2 people living for themselves, but to be one body. God didn't design the family to be separate bodies, but to be interdependent on each other - and Becky and I to be parents who lead/discipline/train/grow our children in the ways of the Lord.

All of this realization this week made me realize that as much as I miss my wife and family, do I miss my time with God more? Sheepishly, I realized I have been so busy with activities of self, that I've separated myself from fellowship with God also.

But, as it tells it in Romans 8:35-39
Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: "For your sake we face death all day long; we are considered as sheep to be slaughtered."

No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

I have to remember, as much as I miss my time with family and my wife, God also misses that time with me.

Please pray for these things this week:

• Titus continues to grow stronger in his breathing and remains healthy
• The bones in Titus chin will continue to grow strong - Dr. Genecov is planning on removing the jaw distration devices the first week of April, which is 2 weeks later than planned, but wants to give plenty of time for the bone to grow and harden.
• Tucker as he recuperates from the Flu
• Cade as he has a runny nose and slight fever
• Aidan has a deep cough
• Paul has cough and congestion and needs rest this weekend.
• Noah and Becky are healthy (and need to stay that way) Becky for rest - she is the most awesome wife and mother and the has earned her "nursing" degree over the past month and can operate all the machines like the nurses.

Wash Your Hands

We are currently at day 27 in the hospital. Titus was moved out of the ICU last Friday afternoon and is now in a regular room on the Pediatric Floor (6th floor at Medical City Childrens). We should have known to expect that he would be moved to a regular room just hours before the parenting conference began at FBC Frisco, but Becky's mom came up to sit with him so that Becky could be there to assist in kicking off the conference.

Now that he is in a regular room, a family member needs to be with him around the clock. And our transition of care has gone back to our regular pediatrician instead of the host of pediatricians who worked on the PICU floor. This means, the pediatrician generally comes around once a day instead of multiple times. We still have a dedicated nurse, but instead of just taking care of 2 patients, she may have numerous patients to care for. And, since it's a regular hospital room, we have to be there to watch his monitors and how he is doing.

They are stilling giving him a very small dose of methadone every 12 hours to wean him off of all the sedatives he had. We are hoping that will end tomorrow since he seems to be fine without it. He will need to be off the methadone prior to coming home, so this will be one milestone.

We are working on getting his feeding schedule back to a 3 hour feeding schedule. He had been on a continuous feed for weeks, but we are breaking him back in to regular feeds. Yesterday they fed him a small amount every one hour, today they are feeding a larger amount every 2 hours and hopefully tomorrow he will be back to regular 3 hour feedings.

He is still on a very low setting of oxygen. We have been taking the oxygen off every few hours to see how he does, but his oxygen saturation will start to dip, so after 30-45 minutes, we put it back on. They are more concerned about his breathing at night since we all tend to breath more shallow in the evenings. This is the biggest milestone we need to achieve before bringing him home - weaning him off of the oxygen. I'm hoping that getting him off of the methadone will help this.

The last several days, Titus has had a sporadic fever that will spike up and then go down. His blood levels are not showing infection and they have on a general antibiotic, but they aren't sure why he is running the fever.

But, aside all of that, he is alert, happy (most of the time), and responding to us when we hold him. We do not know when he will be able to come home, but we do know the milestones that he needs to achieve. As the doctors continue to remind us, he is making baby steps and progress.

I have to admit, that I do not think that I have ever washed my hands so much in my life. When we are at the hospital, we are constantly washing our hands and putting on the anti-bacterial gel. While in the NICU, we had to scrub for 3 minutes prior to entering, robe up when reaching his room, wash hands again when we entered, after we touched Titus, and when we left his room. Every time! It has now become such a routine outside of the office. Gone are the days when I thought my morning shower kept me clean for the day. I am now in a constant state of washing, drying, putting on anti-bacterial gel.

Why do we do it? to keep the germs off of me and away from Titus.

And, when I equate germs to sin, I have to think - am I doing the same? Am I confessing my sin when reminded or just whenever its convenient? Am I obeying what I'm told to do even when I don't feel like it? Do I follow the instruction laid down before me or deviate to do what is convenient?

When I think of washing my hands, I think of the story of Naaman (2 Kings 5), the commander of the army of Aram. A great man, A respected man, A valiant soldier, and a very sick man with leprosy. His money could not buy the health he needed. He didn't want to do what Elijah told him to do until persuaded. I often wonder why Elijah told him he had to wash 7 times in the Jordan (that's a lot of washing). It would seem like once would have been enough. But doing something 7 times requires obedience, it requires stamina, it requires commitment, it requires a desire to be healed - to be clean.

When I get tired of washing my hands for the umpteenth time during the day, I'm reminded that obedience is never easy. It takes work, consistentcy, commitment - even when I'm tired, even when I don't want to do it, even when I think it doesn't make sense to me.

Please pray for these things this week.

• Titus breathing gain strength to keep his oxygen saturation levels up without having to be given oxygen
• Titus fever will go away or fight off whatever it's fighting.
• Titus feedings schedule to be renewed back to every 3 hours and that he will begin to gain weight again
• Rest and peace as one of us it at the hospital all the time. Becky has been staying there the last several nights. She hasn't gotten a lot of rest the last couple of nights with nurses coming in, or monitors going off.
• Comfort for Aidan, Noah, Tucker & Cade - they continue to maintain a good attitude, but it's very hard when they only see one of us for a few minutes each day. We miss our boys - and they miss us.
• Paul's work schedule - the last 2 weeks have been incredibly busy at work preparing for meetings all this week. His work should ease up a bit next week, but last week and this week have been incredibly busy with little room for error (and when you are tired, that makes it all the more difficult).

Last of all, thanks for your prayers for the All About Attitude conference this past weekend. We had a great conference. It is a joy to have a team of volunteers who did it ALL. It was another lesson for me in letting go and trusting in delegation, but everything went without a hitch and as planned. And it was great to see so many friends.

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!

Current Situation

Many of you have written asking for an update - and I am really trying to keep from overflowing your mail box with mail, but here is the latest on Titus Beck.

He is very stable in the NICU at Medical City Dallas. They have removed the large CPAC machine that was supplying oxygen and forcing air down his air way and replaced with a small oxygen line. He is on 21% oxygen (which is the same level we breathe), and the air flow is turned down very low - which means our little man is doing a lot of breathing on his own. In fact, he pulls his breathing tube out of his nose numerous times a day and seems to do quite well without it.

Titus is being fed through a feeding tube through his mouth and they have increased the amount of milk he is taking each day. He is completely digesting his feedings and if I might say, has been quite the poop machine. It seems like every time I'm there, the nurses have some poo to clean up (but the NICU nurses have now asked me to change the diapers which I quite happily do).

He was a little jaundiced today, so he has spent the day under the photo therapy lights and we are praying his levels are back down to normal tomorrow. But, we were able to hold him for the first time today. How precious it was to have our son placed in our arms for the first time.

As Becky and I were talking today, we have been amazed to see God in the details, and I thought I would share some of those with you. As we look back, we realize God has orchestrated all of these events, even down to the littlest things. Here are a few of them:

Within minutes of sending out the first email, I received a reply back from Scott Dillashaw. Scott directs the Bible Fellowship Class I teach at First Baptist McKinney. Scott showed up at the hospital in immediately and let us know that their youngest had gone through the same thing. Scott then followed me down to Medical City Dallas where he is the chairman of the Family Advisory Board. Our cranio-facial surgeon is the same one they had and many of the nurses know Scott & Jill and his family. What a comfort it was to have Scott there by my side, along with Brad Cole and Trey Letcher. Their prayers and support that first night were invaluable.
The cranio-facial surgeon, Dr. David Genecov, came by to explain to me more of his findings after he had evaluated Titus. Titus's chin is underdeveloped and recessed and the concern is that this pushes the tongue back over the air way making it difficult to breathe. After evaluating Titus, he noted 2 things: 1) Titus has a small tongue (and small tongues are not common in the Daily family - just look at Aidan's sometimes) and 2) Titus is "tongue-tied" (non-technical term), but basically his tongue is attached below the tongue - and this is helping keep his air way open. God knew Titus needed those recessive genes to rule out when he was forming Titus.
Here are a few things that you can pray specifically for:

• Titus will have a CT Scan Monday - we are praying for normal results on the brain and that the scan will clearly assist the doctors in determining the best course of treatment.


• Clarity for the doctors in determining the best course of treatment


• Continued peace for Aidan, Noah, Tucker, and Cade. With our kids homeschooled and with me not traveling in my job, the boys have gotten use to both Mom and Dad being around a lot. They have been troopers over the last week and our prayer for them is this is a journey of faith not a journey of fear.


• Our team of Doctors: Dr. Schwendeman, neonatologist, Dr. Genecov, cranio-facial surgeon, Dr. Biavatti, ENT, and Dr. Cramer, Genetics


• Learning to trust in our daily bread. We are very thankful for the sermon series on prayer recently from our pastor. We are truly learning to live on our daily bread. And it's made us realize how much time and effort we spend on future events, when it's today that counts. If you talk to us, you may hear us say, "we can only plan one day at a time and even then, it may change".

Last of all, I want to share with you what Becky continues to say - "God is good". After Titus was born, and we knew within those first few minutes that all the plans we had made were going to change, Becky stated the song that ran through her mind was "God is Good, God is Good, God is very, very, very, very Good". She shared that with the boys at dinner the other night, and we all sat there around the table and sang that song together. Whatever the course, whatever the path, God is good.