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:

• 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.

2 Weeks Old

Becky and I would like to thank each of you for the prayers, emails and phone calls. Your support over the last 2 weeks has been wonderful.

Titus is 2 weeks old today and is holding very steady in the NICU at Medical City. There have been many evaluations over the last week. The CT Scan showed that he is a candidate for the jaw distraction surgery. Since Titus is breathing and maintaining on his own, they have decided to perform this surgery when he is a little older and bigger. That could be in 4 weeks - or could be in 3 months. We do not know the timeframe at this point. The initial genetic testing came back negative on the 10 major syndromes they are looking for and his blood has been sent to Houston for a chromosonal test. This will take 2-3 weeks before we get the results back. There are other items that have been detected that could be an issue later on or will never be an issue - at this point, there is no way to know. But the doctors and therapists have been encouraged by the strength and development they see Titus exhibiting over the last week. He is arching and moving his head like newborns do, fussing when he is uncomfortable or pooping, reaching and grasping with his hands (and very long fingers).

Titus will have surgery tomorrow to install a G-Tube for feeding. Currently, he is being fed through a tube through his nose, but in order for Titus to come home, a feeding tube will be installed directly into his GI tract. Surgery is scheduled for 12:30pm tomorrow, Thursday, Nov. 29. Although the surgery is considered minor and should only take about 20 minutes to perform, the main concern is putting him under anesthesia and making sure his breathing is maintained during surgery. Once he is out from surgery, they anticipate another week in the NICU before he will be able to come home. But, once Becky and I are trained on taking care of the feeding tube, he will come home on a monitor. We are thrilled (and a little nervous), but the doctors have stated that Titus will do much better at home than he will at the NICU.

Becky and I want to share this - Titus is a blessing to us and God made him exactly the way he wanted him to be. There are times when discussing the congenital defects with the doctors that it can seem overwhelming. Titus will have numerous surgeries, therapy, and issues to deal with as he grows older. We can only face them one at time when the time arrives.

As I was driving home tonight from the hospital, I reflected on Jeremiah 29:13 "For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, Plans to give you hope and a future". Nowhere does it say that those plans include a defect-free body, or completely healthy life or a future that will not have obstacles and bumps in the road. But it does say that God KNOWS and that God has a PLAN. Our faith (and Titus' faith when he gets older) will be to trust and obey the plan God has for Titus.

We will update you as we know more - thanks again for the prayers. It has truly provided a peace during this time.

Update on Titus

First of all, Becky and I are thankful for your prayer, calls, and visits. It's wonderful to have such support during this time.

Titus was transported to Medical City of Dallas NICU last evening. He was evaluated by a host of specialists today and we expect tomorrow they will be able to determine the best treatment for Titus. Titus is stabilized and resting very peacefully in the NICU. He is still on the CPAC, but the oxygen level is at the lowest setting and it's mainly for the airflow to keep his air passages open. His breathing and air passage are the biggest concern and the cranio-facial specialist and ENT are discussing the best ways to treat this (jaw detraction or tracheotomy).

The cardiologist did a sono/echo on his heart and stated his heart is fine for a baby 24 hours old. The murmur they are hearing is totally normal for newborns and they will continue to watch, but he is not overly concerned. They also did a brain sono and everything looks good (although the brain sono does not tell them much - just they things are in the place where they need to be). They have sent his blood for chromosomal testing and the geneticist will be up tomorrow. They do not expect results back from the chromosome testing for up to 7 days.

Titus does have one foot that is turning in significantly at the ankle and they have also detected an extra vertebrae at the base of his spine that's not a fully formed vertebrae. These items, along with the cleft palate will be addressed at a later date, but are totally correctable and will not hinder his growth/development.

The best guess right now is that Titus could be in the NICU between 2-4 weeks. Of course, that could change tomorrow and could change again next week. Once they determine the best course of action for his breathing, they will tackle the best way to feed him. Feeding issues need to be resolved before he will be released to come home. They are feeding him breast milk through a feeding tube every 3 hours.

Becky was released from Baylor Frisco this morning and came down to see Titus this afternoon. Aidan and Noah, along with both sets of grandparents were able to go back and see him this afternoon. Beck is spending the night at the hospital in a courtesy room they have provided.

Email is probably the best way to contact us at this time (preferably my email and not Becky's). I do have my laptop with me at the hospital and they have free WIFI so I am connected. Our cell phones are off when we are in the NICU, so we may not answer when you call.

Thanks again for the prayers and support. I'll send an update once we know more.