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.

• 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

Home Again

Titus came home Sunday evening. As soon as came through the door, he seemed to relax and go into a deep sleep. It's like he knew he was back home where he belongs.

Tucker and Cade are over the flu and came home today. I am better, but have quarantined myself away from Titus until I know I'm not sick anymore. I wear a mask inside the house and am sleeping upstairs. Quita won't even sleep with me.

This still leaves the majority of the burden for caring for Titus on Becky's shoulders. She is so glad to be home and back in her own bed, but still feeds Titus every 3 hours and gives him his nebulizzer treatments every 3 hours. So, she's generally up for an hour, then tries to get some sleep in between the next feeding. She has also re-scheduled all of Titus' doctors appointments for the 3rd time and still finds time to love on all the boys and me. I've said it before but will repeat - but Becky D is the MOST AMAZING, AWESOME, PHENOMENAL, FANTASTICAL wife, mother, sister, daughter, and friend there is. She is filled with FABULOSITY!!!! And, I love her dearly - she still takes my breath away.

Titus has 3 doctor's appointments this week: one with the pediatrician as a follow-up, one with the pediatric pulmonologist, and our initial meeting at Scottish Rite. The pulmonologist will be checking his lungs and airway. Titus' airway is still S-shaped - and can still be compromised easily. The jaw distraction surgery has improved his ability to breathe dramatically, but the since it's S-shaped and after the RSV, he still has some struggles.

Scottish Rite will be examining and taking a base-line for Titus. As a reminder, Titus has a hemi-vertebrae at the base of his spine. This can cause curvature of the spine as he grows. By tracking a baseline and observing as he grows, they will be able to determine the best ways to treat for this. Titus right foot - which was almost club when born - has turned back to almost normal position. They will also be checking that to see if any casting needs to be done.

Over the next few weeks we have more appointments with the audiologists to discuss the flight plan for his deafness. And, we also have an appointment with the pediatric opthamalogist. The doctors have mentioned some concerns about his eyes, but there is no diagnosis yet. We do know all the "parts" are there and we know he responds to light/dark, but they will evaluate vision concerns. We will have appointments with the occupational therapists to work on his sucking/swallowing exercises so we can move past the g-tube, along with other therapy to address the delays of spending weeks in the hospital. We are also working on bumping up the amount of his feedings. When Titus left the PICU, he weighed over 9lbs 3 oz, but lost down to 8lbs 6 oz when they stopped the continuous feeds and sedation. He's burning up calories like crazy and we need to fatten him back up. He's up to 78cc every 3 hours, but we are trying to get to 90cc.

All of the above are prayer requests. Managing the doctors appointments and therapy along with caring for Titus and the boys make for very busy days and nights. But God is good, God has a plan, and God is in control.

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 Through Rehab

It has been almost a week since Titus' surgery and our 21st day back in the hospital. There have been some milestones accomplished over the last few days. Last Thursday evening, they removed Titus off of the ventilator and put him on a high-flow oxygen canula. Over the last several days, they have been reducing the flow and amount of oxygen he is receiving. Since they have him off the ventilator, we are able to hold him whenever we want - which is wonderful!

They are weaning him off of all the sedatives they have given him over the last 3 weeks. Titus was given morphine, methadone, fentanol, and other sedatives for 3 weeks. If they were to stop all sedatives immediately, Titus would go through withdrawals - so they are weaning him off the morphine and methadone. Basically, he's going through baby rehab (my term - not the hospital's). When Titus is given a sedative, his breathing becomes much more shallow, therefore not expelling all the carbon dioxide from his blood. As a result, it's a delicate dance of reducing the flow/amount of oxygen and weaning him off the sedatives. They assure us he is doing great. He is much more alert, but still a bit "zoned-out".

Titus is also back to receiving his feeds through his G-tube. He's currently on a constant slow feed, but they will be changing that back to more of a feeding schedule once we get off all the sedation. Titus has gained weight over the last 3 weeks - he is over 9lbs now.

As far as the RSV, he is pretty much over the virus. RSV is a 3-week virus, and it's been 3 weeks today. His lungs sound clear.

I had mentioned in a previous email that Becky and I were looking forward to settling into our "new normal" when Titus came home. After discussions, we've decided going to the hospital once or twice a day is not the "normal" we were expecting. I told Becky this weekend, I just wanted to take Quita (our dog) for a walk - because that's normal.

So Sunday afternoon, after spending a few hours holding Titus, I came home and walked the dog. And, as I'm out walking the empty streets of the new subdivision being built across the street, the tears starting flowing. (OK - I'm not usually this emotional - and I generally don't cry that much.) But walking the dog made me cry because for the first time in weeks, I felt normal. And I thought, I just want my life to go back to the normal that I expect it to be - which includes having all my sons under one roof.

And the thought came to me, did Moses ever wish to go back to life as a shepherd instead of leading some obstinate people? Did David ever want to go back to herding sheep instead of being a king? Did Peter ever want to go back to being a fisherman instead of being a disciple? Do I want to run from the trials and tribulations of life because they are tough and not what I expected? Am I demanding my own way instead of God's way?

And as I walked (and cried), I thought about dependence. Who am I depending on? Titus is struggling to get rid of dependence on something he doesn't need but his body wants. Likewise, am I depending on God which requires my total trust and faith in His plan - especially a plan I cannot see or am I fighting/resisting/struggling with my desire to do things my way.

I'm glad Moses didn't give up on the Israelites, I'm glad David stayed a king, I'm glad Peter gave up fishing. Those men remind me that dependence on God is a day-by-day walk however difficult or hilly the path may be. Although I can only look forward with blind eyes and faith, I can look back and see the visible hand of God in my circumstances.

Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. 1 Peter 5:6-7

Please pray for these things this week:

• Titus' breathing will continue to grow in strength and depth.
• Titus will be weaned off all the sedation drugs with little discomfort
• Titus will continue to be healthy in the hospital without any more infections / viruses
• Continued rest for Paul & Becky and the boys
• And, I have one special prayer request unrelated to Titus. This weekend is the "All about Attitude" parenting conference at FBC Frisco that Becky and I have planned along with our other leaders in our Growing Families community. As many of you know, Becky and I are the captain of the Key Couples for Growing Families in Dallas and have taught parenting classes in Dallas for the last 9 years. We are so incredibly thankful for our leaders in this parenting ministry who have taken up our slack and took care of all the details for this weekend. The only thing we have to do is emcee. It will be such a joy to see so many faces of parents we have taught over the years who have registered for the conference. Our dear friends and mentors, Joey & Carla Link will be traveling in Thursday and will be the speakers for the conference. Please pray for the Links as they travel, Please pray for the 175 people who have registered for the conference that their lives and parenting will be encouraged, Please pray for all the volunteers who will be handling the details of setup, sound, bookstore, food, and cleanup.

And, (ok - now I'm starting to sound like one of those long-winded winners at an award show - I hear the music swelling), I have to let you we are so thankful for the incredible church family we are part of at FBC McKinney. Becky and I have commented over the last several months on how loved we feel when we walk into church. Frankly, there are Sundays/Wednesdays that it's hard to walk in, but we never regret it once we are there. We feel so blessed to be part of such an awesome family of God. It's extremely difficult to explain how much the smiles, hugs, cards, and prayers have meant to us and have been such a testimony to Aidan and Noah. We want you (and everyone) to know how thankful we are for our church family. We feel so loved.

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:

• 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

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:

• 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.

The Trip to Sydney

In November, 2003, Becky and I went to Sydney, Australia for an incredible trip of a lifetime. I had work to do there and after numerous trips to Europe that Fall (leaving Becky alone with the boys), she was ready for a week away. So, we made our plans and used my frequent flier miles for Becky's ticket. The only problem was - due to availability of flights, she flew to Sydney 3 days after me. And, since I used my miles for Becky's ticket, I didn't have enough to upgrade to business class as I usually did, so I flew in coach.

If you have ever flown to Sydney, you know how long a flight it can be from Los Angeles (18+ hours). My flight left several hours late at 3am instead of 1am, and I was already exhausted since I was keeping myself awake until I got on the plane. As I settled into my middle seat in coach over the wing of the 747, I took my Tylenol PM and got comfortable - until take-off. You see, these old 747s are huge - and experience a lot of wing vibration during take-off - a little piece of information that the pilot didn't share with us prior to take off. So, as we lifted off, and the wings begin to VIOLENTLY shake, rattle and roll, the adrenaline rushed through my body since I knew beyond a shadow of a doubt that the wings were coming off the plane and we were doomed for the Pacific ocean. (Now, having flown internationally numerous times, these things generally don't bother me - I landed at Gatwick once during gale force winds.) But this violent wing vibration scared the living daylights out of me even though it only lasted for 10-15 seconds. Needless to say, the Tylenol PM I had just taken had no effect over the adrenaline - and I was awake for hours after that. And there I sat, exhausted, bored, cramped, for hours and hours in the dark. When you fly to Sydney, they close all the shades since there's nothing to look at but water and sky the entire trip (and that can also freak you out). I tried to watch movies, but since I had just gotten back from 2 trips to Europe the month before, it was all the same movies on the flight. (I think I watched 'My Big, Fat, Greek Wedding' 5 times on those trips). The pilot gave very few updates and I thought the plane trip would never end. But, it did - and Becky and I had an incredible time in Sydney - one of the most beautiful cities in the world with the friendliest people. (BTW, ask Becky about Bondi Beach sometime).

Titus has now been in the PICU for one very, very, long week. But, he has shown great improvement over the last 2 days. They are in the process of weaning him off of the ventilator and he is taking good breaths in between the breaths that the vent provides him. They anticipate extubated him tomorrow, but a lot will depend on how he does today. He looks good - they gave him a bath yesterday and his hair was sticking straight up. His dark hair is falling out a bit and is coming in much lighter. He still has a lot of hair, but not near as much as a month ago. He is still sedated, but opened his eyes a few times yesterday. We have not been able to hold him in the past week, nor touch him without gloves on. That's been one of the hardest parts about this past week - to stand there next to his bed, and not to be able to hold him. They are also beginning the process of weaning him off the heavy sedation. Dr. Genecov has also been by several times to check his jaw. It looks good and we no longer need to turn the screws. Titus will have surgery in 8 weeks to remove the device. I'll send out pics soon to show you the incredible difference this has made.

Becky and I have talked how this week in the PICU was like the flight to Sydney - alone, long, dark, quiet, exhausting, few updates, turbulence. But just like the flight, there was an end - with a glorious time afterwards. Titus still has several more days in the hospital, but we are beginning to see the end in sight. These have been long days, with some scary episodes and I'm reminded that waiting is sometimes part of God's plan. Abraham and Sarah waiting for years for Isaac to be born, Joseph lingered in jail, Moses spent 40 years as a shepherd after being a prince before he became a leader again, David waited for years before he able to claim the throne. Over and over in the Bible, there are numerous examples of men and women who waited. And, as we stated before, there will be a lot of waiting over the next few years for Titus. The verse I read this morning reminded me again that Becky and I are not forgotten - Titus is not forgotten - my family is not forgotten. We wait, as hard as it is, as limiting as it can be, we wait because God has a plan.

Lamentations 3:23-25
They are new every morning; great is your faithfulness.
I say to myself, "The LORD is my portion; therefore I will wait for him."
The LORD is good to those whose hope is in him, to the one who seeks him;

Please pray for these things:

• Titus strength will return - his breathing will continue to grow stronger today
  Taking Titus off the vent and sedation - this is a delicate dance and we pray that Titus will pick up his breathing
• His lungs will continue to clear all the secretions and be clear/fully inflated
• Our Medicaid application has been submitted - and we pray for approval. This will help in the long term (and short term).
• Continued rest and peace for Becky and I and the boys - Becky commented last night how rested she has been over the last few days and she knows it's because of the prayers being lifted up.

Still in the PICU - I Surrender All

Titus is still in the PICU at Medical City Children's Hospital. He is on a ventilator that is breathing for him and is sedated. Last night, they changed the sedation to a steady drip instead of every 3 hours. Yesterday, they had started the process to wean him off the vent, but during the night, they had to turn the oxygen levels back up. They assure us this is all part of the process with babies sick with RSV. The respiratory therapists continue to provide treatment every 3 hours and suction out all the secretions. They are getting less and less out, which is good. But, Titus has been fighting with them every time he gets a treatment. They have noticed, that even though sedated, his body would resist, fight back, and shut down when they were trying to work on - so, to make him rest, and to allow the staff to do their job, they have increased his sedation. In one way, my boy is strong and fighter (They all comment on that) and on the other hand, he looks absolutely pitiful fully sedated. He currently has two IVs - one his left arm and one in his left foot. He also has an arterial in his right wrist allowing them to draw blood for lab work easily. They are feeding him through a line in his nose instead of his g-tube - but that's mainly because they have him prone on his stomache right now. They still have his arms tied down. And, as mentioned, he is intubated with the breathing tube. The doctors and nurses continue to assure us that he is showing signs of improvement and everything he is experiencing is completely normal for as sick as he is and has been. They continue to assure us that he will have several days of ebbs and flows on his way to getting better.

The last few days have been the most difficult and darkest for Becky and I. We hurt to see our baby this way. We hurt to see our baby in pain. We hurt to stand by his side and be so helpless. I don't know that I have ever felt so completely helpless in my life. As I was losing it the other day, the hymn that kept coming in my head was "I Surrender All". I must admit, it's much easier to sing it than to live it. I know I have to surrender Titus up to the Lord - at any cost. But, I have to admit, I cried out to the Lord that I can't do it. I cried out I want more than just 8 days at home with my son. Becky and I held each other yesterday and sobbed over how hard it is to surrender Titus up to the will of God.

In Titus nursery, we have Psalm 4:8 written on the wall above his crib. "I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety." When we choose that verse, we never knew how the entire psalm would describe our journey. This weekend has been more of a Psalm 4:1 weekend of crying out to the Lord and today has been more of Psalm 4:4 "search your hearts and be silent". And, I know there will come the day when I will claim Psalm 4:7 "You have filled my heart with greater joy". And, I know there will come a day, when I lay Titus back down in his crib to sleep in peace.
Psalm 4
Answer me when I call to you, O my righteous God. Give me relief from my distress; be merciful to me and hear my prayer.

How long, O men, will you turn my glory into shame ? How long will you love delusions and seek false gods?

Know that the LORD has set apart the godly for himself; the LORD will hear when I call to him.

In your anger do not sin; when you are on your beds, search your hearts and be silent.

Offer right sacrifices and trust in the LORD.

Many are asking, "Who can show us any good?" Let the light of your face shine upon us, O LORD.

You have filled my heart with greater joy than when their grain and new wine abound.

I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety.

So, although my heart is heavy-laden and burdened and I struggle to surrender all. I surrender - white flag and all - I surrender all to Jesus, all to him I freely (that's the hard part - freely) give.

Ponder Your Feet

As I mentioned in the first email, Titus has RSV and they told us the first 72 hours were the worst. Yesterday he progressively got more and more congested and his breathing became more and more labored while in his room on the pediatric ward. He was really retracting in his chest with his breathing. The excellent nurses and respiratory therapists (RT) took action and Titus was moved to the Pediatric Intensive Care Unit (PICU). This is a much better place for him to be. Much like the NICU, Titus has the full attention of 1 nurse and RT and the pediatrician constantly checking in on the hall.

Immediately upon arriving at the PICU, 1 doctor and 3 nurses/RT began working on him. The decision was made to sedate him and put him on a ventilator to breathe for him. They also started an IV to give him fluids and medicine. We stepped out of the room while they performed these procedures. When we came back in, Titus was at rest - sedated, but we could tell he was resting. The plan was to keep him sedated for the next day, so we made the decision to go home and get a good night's rest. The boys were staying elsewhere, so Becky and I went to eat, then went home, watched Project Runway, and went to bed with Quita between us. We both got a great night's sleep.

Titus had a rough night even though he was sedated. They continued to suction him out through the night. When we arrived this morning, they also had his little arms restrained. Apparently, he's been trying to duke it out with the nurses, so this keeps his hands out of all the tubes for right now. Honestly and frankly, it broke my heart to see him like this. When he was in the NICU, he wasn't sick - we were mainly waiting on the surgeries and flight plan on what to do - he did had 2 infections but with antibiotics he was alert and responsive. But now, seeing him so sick, lying their sedated and non-responsive - well, it breaks my heart. I keep telling myself, the first 72 hours are the worse and we are halfway through it.

They are trying to determine if he is fighting any other infection. His temps today are low - around 96 degrees - whereas last night, they were hovering between 99.2 to 99.4. The blood work all falls within normal ranges, but his temp is a concern. They are moving him to a warming bed to help get it back up. They are feeding him slowly and keeping him hydrated through an IV. He did weigh 8lb 3oz when we checked in the other day - so he's been steadily gaining weight.

On days like today, when it's cold and dreary outside (Dallas got a cold front last night - it's below 30 degrees today - and I know all my midwest friends are laughing at that comment, but trust me, it's COLD), it's a struggle to be positive. I just want to hang my head and cry (and I have). And that allows my mind to drift to worst-case scenarios. As I was having one of my pity parties in the car this morning, I remembered a quote I told my Bible Fellowship Group last Sunday while teaching. Dear friends of ours (Mike and Jody Krogstad), had shared this with us as a parenting principle, and even though I have worked on it with my kids, today was the day that I needed to work on it myself. It's really a deep concept, but one that's so easy to practice. Here it is:

Ponder your feet!

Isn't that awesome! and deep! and theological! Think about it - ponder your feet. Ponder is such an old-fashioned word. It means "to weigh in mind with thoroughness and care". We have used this with our kids to teach them to focus on something other than what might be blatantly in front of them (like an inappropriate billboard, or commercial on tv) but it also goes deeper than that. If I am pondering my feet, then I am shutting out everything else around me to look at the path directly in front of me. I'm not looking at my destination, I'm not looking at all the "detours" to the left and right, I'm not being distracted from where I need to go. . . I am carefully looking at my next step. I put my blinders on and only focus on the task at hand that God has called me to. And when you pair that with Psalm 119:95-105, it all comes together.
The wicked are waiting to destroy me, but I will ponder your statutes. . . Oh, how I love your law! I meditate on it all day long. . . I have kept my feet from every evil path so that I might obey your word. I have not departed from your laws, for you yourself have taught me. How sweet are your words to my taste, sweeter than honey to my mouth! I gain understanding from your precepts; therefore I hate every wrong path. Your word is a lamp to my feet and a light for my path.
I know Satan would love to have a hey-day with me (and Becky and the boys) by putting doubt, disbelief, and fear in my life. But today, I am gonna ponder my feet and realize the path that I am on is illuminated each step of the way by the word of God. Only He knows the destination and the full journey for Titus. I trust in HIM.

Please pray specifically for these things:

• Titus will remain rested and strong while on the ventilator
• Titus temperature will raise back up to normal and his body be clear of any infection
• Continued rest for Becky and I
• Titus pediatrician - Dr. Chimelli - and the incredible staff of nurses/RT's on the PICU (many of the same RT's were with us in the NICU - and it provides some comfort already knowing them)
  

Last of all, each of you is such a blessing to Becky and I. Your prayers sustain us, Your phone calls/emails/letters encourage us, Your love is felt.

Back in the Hospital

Titus has been home for the last 8 days and has been doing great. It's been great to have him home.

We have started a series of doctor's appointments and follow-ups with the various doctors. Today, Titus spent about 4 hours as they reviewed the status of his jaw. His jaw looks awesome - and we will continue to turn the screws for one more week and then stop, allowing the bone to buildup and fill in. Dr. Genecov is pleased with the progress and how much his jaw has pushed out. It truly is amazing and I will have to send out before and after pictures for you to see.

But today, when Becky returned home, she was noticing how tired he was and his little cough that he had this morning was starting to sound worse. While feeding, his breathing got worse and he turned gray. Becky called 911 and the paramedics were there instantly. Prior to coming home, Becky and a friend visited the local fire station to inform them of Titus since they would be the responders in the event of a call to 911. As only God would foresee, the team that responded tonight was the team that Becky had visited with several days ago. TItus pinked up upon giving him oxygen, but after conferring with the doctors, it was decided to take him back to the ER at Medical City. Upon arrival, they immediately tested him for RSV (a nasty respiratory virus that's common this time of years for infants) and he tested positive. Titus was given Syngesis, a vaccine for RSV, several weeks ago, but as they told us, the vaccine does not prevent the virus, but hopefully will make the case and symptoms less severe. Since the first 72 hours of RSV are the worse, they checked Titus into the Pediatrics ward at Medical City Children's Hospital. This is the same hospital we were at previously. They are giving him nebullizer treatments every 3 hours and suctioning him as needed while they have him hooked up to the monitors. As the hours progressed, we could tell he was feeling more and more puny, and we realized that we got him to the hospital just in time as it looks like he is just now really coming down with the virus. I came home to be with the boys tonight and just checked with Becky before going to bed. They are trying to determine whether or not to take him to the Pediatric ICU (PICU) or leave him there. One of the issues with RSV is that breathing becomes difficult for the infants - so they just stop. If they are going to put him on a CPAC breathing machine, he will need to be in the PICU.

Please pray specifically for these items:

• The next 72 hours are the roughest for Titus - pray that the vaccine he received will keep the symptoms light. Pray for TItus breathing, his strength, and his rest.
• The RSV virus last for 3 weeks - this does not mean he has to stay in the hospital for 3 weeks, but we know it's going to be awhile before he's back to his old self - but we pray for complete healing in God's timing.
• Strength for Becky and I as we again make the trips back and forth to the hospital
• Comfort for Aidan, Noah, Tucker and Cade as they get shuttled around a bit over the next few days
• Praise for his jaw as it has improved his breathing dramatically. If he had gotten RSV any sooner or prior to surgery, he would be struggling so much more. Pray that the bone will begin to form and harden.
• The team of doctors/nurses overseeing his care. Since we are in the Pediatric ward now, it's a whole new set of nurses and doctors that we will be working with.
  

As I told my parents tonight when I got home - this is just part of the journey for Titus. We know there are going to be events like this for him and today was just one of those things that's going to happen. I was so proud of Becky and the boys (and my parents) for their response as they called 911 and the paramedics arrived. Everyone was calm - which is how I want my boys to learn to handle emergencies - with a calm heart, urgency in action, and a call to prayer. I'm so reminded of 2 Cor 4:16-18 "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."

Fixing our eyes on what is unseen,