Monday, December 31, 2007
They have been trying to locate the area of infection, but this afternoon, one of the sites of his jaw distraction was oozing, so they are pretty sure the infection is around the jaw distraction device in his jaw. The cranio-facial surgeon has come by this afternoon to review Titus and says infection around the site is common and he's on the right meds, but still, our hearts are anxious.
Titus was pretty lethargic today with the antibiotics. And due to the IV and the giving him blood, we were not able to hold him. Today has been difficult after the last few days where he has been unhooked and alert. Going back to seeing him hooked up and limp broke our heart.
Our specific prayer request is that Titus' body will respond to the antibiotics and the infection will start to clear, that his IVs will stay in and his veins will not collapse around the IV, and for Becky and I to "cast all our cares on Him" because we know God is watching over all. Lastly, the company I work for has changed insurance and tomorrow, our insurance changes from United Healthcare to Cigna. Our prayer is that we will not have any complications with the switchover.
Sunday, December 30, 2007
So, tomorrow they will check his progress - he may come home tomorrow, or it may be a few more days. We realized as we left, how thankful we were to catch the infection while still there since we may not have noticed it at home for several days.
Please pray that the infection is minor and oral antibiotics will take care of assisting his body in fighting the infection. If this turns into a major infection, they will start an IV which is always difficult with Titus' veins (and they removed the broviac line last week.)
Thanks again for your thoughts, emails, and prayers.
Saturday, December 29, 2007
Ok, forgive the 70's flashback (I know some of you still remember Tony Orlando and Dawn - even more, you remember their variety show! - and others of you weren't even born yet and are asking Tony who?), but that's the silly song going through my head when we heard the news that Titus is coming home on Sunday, December 30, unless there are any circumstances that happen today to prevent that.
Needless to say, we are in shock and disbelief that this day has arrived - you would think we would be better prepared. They had told us to expect 2-3 weeks after surgery, so when it was mentioned it would happen this soon, we kept questioning the doctors "are you sure?" But, they are sure. They have even taken all the monitors off of him and let us hold him several times this week without any monitors. I had forgotten how easy it is to hold a baby without having to negotiate 4-6 different wires and cables that tether you to the crib. Of course, I was still nervous about his oxygen levels and respiratory rate, but I soon relaxed and watched his face. It wasn't turning blue, so he was fine! As it turns out, I was the one who needed to relax.
Titus had done remarkable since surgery. After 1 week, you can tell his jaw has pushed out and his breathing has improved. It still has a long ways to go, but just to see this improvement after one week is great. Several of you have asked if Titus is in pain when we turn the screws. From observing him, he has no reaction when we do it, which leads me to believe it does not hurt him at all. Each turn pushes the jaw 1/2 mm which really is miniscule when you look at it. We turn once in the morning and once in the afternoon.
He is back up to full feedings and has regained the weight he lost those few days after surgery.
Titus has been sucking on a pacifier the past few weeks and today they started working with him to see if he would swallow a few drops. He did fine and took about 3cc's of milk. Now, that's still a tiny amount, but it's a start and we can start working with him several times a day to get him use to swallowing some milk. This will be one of the areas that we will be working on a lot over the next few months. We will still have his g-tube for feedings, but the goal is to get him to take his milk through the mouth and not through the g-tube. This could take all year, but it's one of the many areas we will be working on with him.
We also have recieved the list of appointments that need to be made for Titus over the next few months. Titus will have another surgery in a few months to remove the jaw distraction device (probably mid March). We also have meetings with the ENT to fit Titus for hearing aids and then plan the procedure for cochlear implants. We also have visits to Scottish Rite Hospital to begin the casting for his right foot which is turned. And, along the way, he will have his normal well visits with the pediatrician, and twice a week visits from the therapists at home. Becky will be busy coordinating these visits while homeschooling Aidan and Noah.
This morning, I kept repeating Prov. 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and He will direct your paths." The past 6 1/2 weeks have been an incredible lesson in learning to trust. I had to trust doctors I didn't know to do what was best, I had to trust nurses we hadn't met to take care at night when we weren't there. I had to trust surgeons as they wheeled my son away to surgery. But most of all, I had to trust God that he had plan and purpose. And, that I may not know the reason why today or for months to come, but for today, I have to TRUST. For a melancholy like me, trust is not always an easy thing. Maybe's it one of the reasons why I look to do things by myself since I trust myself. But to put my trust in God and in others is not any easy thing to do - and yet, as the verse states "trust in the Lord . . . lean not on your understanding." I pray for Titus that as he grows older and we recount these days back to him, he will see the journey of trust in the Lord - and he will learn to trust in Him.
Words are so hard to express our gratitude for all the prayers, emails, cards, and letters (especially from people we don't even know.) You have blessed us beyond measure. We have printed off all the emails and have put them in book for Titus.
For those who have taken care of my children - thank you. You provided much comfort and solace to Aidan, Noah, Tucker, and Cade when we couldn't be there.
For those of you who provided food - thank you. I know I have gained weight and our freezer is still full.
For those of you who cleaned our house and washed our clothes - thank you. I am truly humbled. Cleaning the house is generally my job and to let go and let someone else do this was really difficult for me. But to come home and have our house clean and clothes washed was such a blessing. BTW, I have finally found all my underwear and socks ( they were just put in a place we don't normally put them - but I was worried for a few days that someone had thorwn out all my underwear and socks).
Thanks again and Happy New Year!
Friday, December 21, 2007
The surgeon was able to push out his jaw 4 mm during the surgery which will already make an improvement in his breathing. He came out of surgery extubated and just has the regular canula for some oxygen. On Monday, they will teach us how to turn the screws and we will turn the screws a 1/2 turn in the morning and a 1/2 turn in the evening for the next 12 weeks. This will push his jaw out up to 3 centimeters. At the end of the 3 months, they will do another surgery to remove the screws.
This morning, right before surgery, Titus' g-tube came out. The g-tube is held in place inside his stomache with a small balloon inflated with saline. The balloon had ruptured and his g-tube fell out. The nurses had prepared for this and had ordered an extra g-tube that had just come in the day before. Two nurses and the doctors came in, examined Titus, prepped the g-tube and then the doctor stated, "let's let dad do this" - in which I promptly replied " let's let mom do it!" Becky took it and popped it in like a pro (and I stood several feet behind and applauded her and didn't pass out).
Thanks for the prayers today. After everything was over today, Becky and I both fell asleep in the chairs in his room. I think we all (including Titus) needed some rest.
Wednesday, December 19, 2007
Yesterday, the audiologist did an ABR test on Titus hearing. We have noticed that Titus does not seem to respond to sound or noises in the room. The test confirmed what we suspected. Titus has signficant hearing loss in both ears. Even though we suspected this, it was still hard to hear the news confirmed. But we trust in God's plan and know there are amazing things that can be done in this area for Titus.
After the audiologist left, and Becky and I stood there holding each other, we prayed over Titus' bed that God's will be done. The verse that kept coming up in my head was Josh 24:15 "choose for yourselves this day whom you will serve . . . But as for me and my household, we will serve the LORD." As I left the hospital, I kept telling myself "I choose today. I choose today".
After 5 weeks in the NICU and knowing we still have several more weeks there before coming home, and then looking forward knowing that 2008 will contain several more surgeries/procedures followed with a lot of therapy over the next years, I have come to realize this is a lesson in perseverance. Perseverance is so much more than patience. When we adopted Tucker, we had some delays in bringing home. When we accepted his referral in September, we thought he might be home prior to Christmas, but if not, at least in January. As things unfolded, we were not able to bring him home till April. At the time, the wait was horrible and gut-wrenching. We had a child on the other side of the world that we just wanted to bring home, but had to wait until all the legalalities were taken care of.
At the time, I thought we persevered - I now realize it was more just patience. With Titus, this is perseverance. But we persevere because we know it is what God has called us to. Oswald Chambers defines perseverance as this: Perseverance is more than endurance. It is endurance combined with absolute assurance and certainty that what we are looking for is going to happen. We know and trust that God has a wonderful plan for Titus and we choose today to serve the Lord and persever and not to give into fear and doubt. Our prayer today is Isaiah 26:3 “You will keep in perfect peace him whose mind is steadfast, because he trusts in you.” The only way we will be able to persevere is keeping our mind steadfast and our trust in God.
This week please pray for the following:
- Titus jaw distraction surgery on Friday, Dec 21 at 9am. We are also praying for Dr. Genecov and his team who are performing the surgery.
- Titus' recovery after surgery. Dr. Genecov hopes to return him after surgery extubated from the breathing machine used during surgery and with his breathing showing signs of improvement from the initial displacement of the jaw.
- Continued improvement of health for our family. We have all been struggling with coughs/infections of some manner over the last few weeks.
- Navigation of the Supplemental Social Security and Medicaid forms and completion of insurance claims. It is hard to find the time to spend on the phone (on hold) with these agencies, but these are necessary items that need to be completed in a timely manner.
Thanks again for all the notes/emails of encouragement, for the prayers, for the food, for the people who have even been cleaning our house, for our friends who have watched over the boys. This is so humbling and we are so grateful.
And a special thanks to our parents (Nolon & Lou Daily and Jerry & Elizabeth Temples) who are always there supporting us. Many of you know our parents and know how special they are. We couldn't ask for better parents or better grandparent to Aidan, Noah, Tucker, Cade, & Titus.
BTW, Nolon & Lou celebrated their 52nd wedding anniversary this week - thanks mom and dad for persevering and setting such a fine example.
Thursday, December 13, 2007
Titus is a month old tomorrow. After 4 weeks in the NICU, he has made much progress from when he first came in. We haven't reallly had any "steps back" until this week, so although it initially caught us off guard, we realize that setbacks are to be expected in the NICU.
Titus was originally scheduled for jaw distraction surgery yesterday. When Dr. Genecov, the cranio-facial surgeon, stopped by on Tuesday to review the procedure with us, Titus' white blood cell count and temp was up. This indicated an infection. Further tests confirmed it, but they could not find exactly where the infection was. Nevertheless, surgery was postponed to make sure all signs of infection were gone. They started Titus on antibiotics immediately and he has responded well to them. He was also struggling with his oxygen levels, so they put a canula under his nose to provide oxygen. As of now, indicators looks good the infection has been taken care of, but they will keep him on antibiotics and oxygen for a few more days. To administer the antibiotics, they had to install an IV. Since the day Titus was born, they have had problems installing IVs - and it's truly painful to watch them stick him numerous times only to have the vein collapse.
Today they tried to install a PIC line IV but gave up after trying for over an hour. When we finally saw him, his little arms looked like a pincushion and he was wide-eyed and hungry. He settled down after a feeding and got some rest. But, since Titus will need a solid IV installed for them to administer antibiotics and pain medicine after his surgery, they are installing a broviac IV tonight. Dr. Renard, the pediatriac surgeon who took care of Titus during his g-tube surgery, is installing it as I type this email.
After the last two weeks of being able to hold him with only a few wires, it's been hard to see him go back to have more wires and oxygen tubes around, but we know it is for his good and only temporary.
The jaw distraction surgery is now scheduled for Friday, Dec. 21. I do not know the time yet, but will let you know as we get closer.
Becky and I went out to dinner last night on the way home from the hospital. We needed the time to just talk. We are tired, we miss our boys, we feel as if we shuttle them back and forth so much, and we feel so helpless for Titus. But we talked about the main verse that has resonated in my head "My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 12:9.
For my birthday last year, Becky and boys gave me a Noah Webster Dictionary from 1828. The beauty of a Noah Webster dictionary is that most of the definitions have Biblical references. Grace, has more than 20 explanations as defined by Webster. But some of them are:
the free, unmerited love and favor of God, the spring and source of all the benefits men receive by Him, favorable influence of God, divine influence or the influence of the spirit in renewing the heart and restraining from sin Christ's righteousness to the sinner, Favor, mercy, pardon
And sufficient is defined as "enough to equal to the end proposed; adquate to wants; competent; qualified; fit"
So, taking this back to Becky and I sitting at dinner - we talked that God's grace (HIs free unmerited love, favor, mercy, pardon, privilege, benefits) is sufficient (enough, adequate, competent). In our microwave, super-size-it world where we want it NOW and we want it BIG, I have to realize God is sufficient. He's all I need, He's ENOUGH, more than adequate, and entirely competent. And as I struggle with the 'I Want Titus Home NOW and I want my life back to normal NOW' thoughts, I'm reminded over and over 'God's Grace is Sufficient'. And even more, that His power is made perfect in my weakness. I hate being weak - as much as I want to rush in and fix everything, this is a situation where my talents can't help Titus. I'm totally helpless as I watch the doctors/nurses work on my son. Yes, I can pray, but when you stand there watching a team work on your son, you want to do something. It's my son and I want to help him, but I can't. So instead, I sing.
Jesus loves me, this I know
For the Bible tells me so.
Little ones to Him belong.They are WEAK, but He is Strong.
Yes, Jesus loves Me.
Yes, Jesus loves Titus.
Yes, Jesus love me,
The Bible tells me so.
Thank you for bearing with me through my long emails. Writing is therapy for me (Hello, my name is Paul, I write a lot. It's been 4 days since my last wordy email).
Please pray for this things this week:
- Titus Broviac IV can be installed with no problems and function completely for the all his needs the next few weeks
- Titus body will be healed from all infection so that surgery will go as scheduled next Friday
- Titus breathing will stay strong
- Titus will continue to gain weight (he's over 6lb 3 oz - and getting a little chub on his skinny legs).
- Our health - Aidan, Cade, Tucker, and Paul are all struggling with coughs, allergies or asthma
- Becky's strength as she coordinates schedules, hospital visits
Wednesday, December 12, 2007
Titus had a slightly elevated white blood count and his temp has been a little higher (not a fever), so to be sure he's not fighting an infection, they are giving him some antibiotics and the surgeon, Dr. Genecov, wanted the antibiotics to be in his system at least 24 hours, therefore the delay.
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.
Wednesday, December 5, 2007
Titus has adjusted beautifully to the feeding tube and is up to full feedings and putting on weight. Last Saturday, Titus started sucking on a pacifier – this was a huge milestone for him since he has not had the sucking reflex before.
As long-winded as I can be in my emails, I do want to share this. Titus has been a miracle from the beginning. As you know, it’s been over 9 years since we had a biological child. During those 9 years, we experienced multiple losses, infertility treatments, and the joy of adopting Tucker and Cade from South Korea . In Mar. 07, we had completed the application process to adopt a girl from China when we found out we were pregnant. Our pregnancy put the adoption on hold. We were very nervous those first few months of the pregnancy. Each doctor’s appointment and sonogram were approached with apprehension during the first and second trimester. And yet, each time we saw a strong heartbeat, a growing child, a beautiful life being formed.
One night, early in the pregnancy, we were watching “Facing the Giants”. There is a line in the movie that states (and I’m paraphrasing) “God can, just because He’s God”. Becky and I looked at each other and knew this child was our miracle – just because God is God. Not because of anything we have done, but just because He is still in the miracle business. And, along with realizing that God CAN is the humbling reality that God does not need my help, my advice, or my opinions to accomplish His plan – He needs my obedience.
For me this past week, the verses that have been on constant rewind in my head are:
“BE STILL, and Know that I am God,” Psalm 46: 10
“The Lord will fight for you, you need only to BE STILL.” Exodus 14:14
It’s hard to be still, but I realize that I can’t be a light in this world if I’m running around. If you think about it, what happens if you light a candle and start walking around? The candle will go out. A candle burns brightest when we are still. Sure, I can put a globe around my candle and let it shine while I race around, but isn’t that like putting it under a bushel? When I’m running around, do people see my activity or my light? I have to BE STILL, know that God CAN, and let that light shine.
Please pray specifically for these items:
- Titus’ breathing will be stable and strong
- Dr. Genocov (the cranio-facial surgeon) will evaluate Titus and move up his jaw distraction surgery. This will resolve the breathing issues he is having.
- Aidan and Noah are participating in Christmas Journey this week. They are so excited to be part of this ministry to the community. Last Saturday, Aidan made his own flyers for Christmas Journey and then hand delivered them to our entire street. We are so proud of the young men they are becoming.
- Cade has an ear infection that was detected today. He is starting antibiotics tonight.
- And lastly, strength and endurance for Becky and I. We are so thankful for the encouragement and support, but our bodies are running down a bit with shuttling back and forth to the hospital, taking care of kids, and me going to work.