Thursday, November 29, 2007
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!
Wednesday, November 28, 2007
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.
Sunday, November 18, 2007
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.
Thursday, November 15, 2007
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.
Wednesday, November 14, 2007
Titus was born with an underdeveloped chin which affected the development of his hard palate. These difficulties are affecting his breathing. The doctor is also hearing a significant heart murmur which may or may not clear up over the next 24-72 hours.
Becky will be staying at Baylor Frisco tonight, but Titus will be transferred to Medical City Dallas in the next hour.
Your prayers for Titus and the doctors and staff that will be working with him are appreciated. Becky will be released in the morning, but still needs your prayers as her body heals.
I'll be checking email when possible.