Who hath made man's Mouth? Exodus 4:11

Titus Dedication

2009-09-06T21:59:00.003-05:00

Today we dedicated little Titus. We were so blessed as we reflected back on how good God has been to us in these past 7 months of Titus's life. It is our prayer that we would raise Titus to be a godly man who is a child of the Kingdom.

We are so grateful for everyone who stood, at Pastor Ryan's charge, and committed to supporting us through prayer and encouragement as we raise Titus.

We love you baby "T"!

Post-Post Op!!!!

2009-05-30T14:03:00.003-05:00

As you can see, the first picture is right after Abi and I said, "You did great in surgery Titus, Go get your Hawaiian shirt on cuz we're going to Maui!" The second picture is right after we said "Psych!" Apparently Titus didn't appreciate the humor

Post-Op

2009-05-02T22:03:00.006-05:00

The surgery ended up taking a full hour longer than anticipated due to the complexity of our little guy's clefting. In the end the surgeon stated that it was a success! Titus is very swollen in these pictures (one in the hospital and one in recovery). The bandage across his face is helping to keep the tension off of the stitches. We are not allowed to remove it or clean any of the blood off until after our follow-up appointment next Friday. He also has to where the elbow splints so that he doesn't touch his lip.

Titus had a rough couple of postoperative days. It turned out that he was having a bad reaction to the Tylenol and so once that was discontinued, he began doing better. His pain was actually minimal and now it doesn't even seem to bother him. Fearfully and wonderfully made, he is a testimony to that. Thank you all for your prayers.

The swelling has already subsided dramatically and I will get some newer pictures up soon. He looks much different from the pictures here. The surgeon also was good about giving us realistic expectations going forward. Titus will have his palate surgery at the end of the year. He will have to have a "nose job" around age 4-5. (They say that they concentrate on the upper lip now, because if they fixed the nose at this time, it wouldn't grow properly. So he will be a bit flat nosed for a while) His upper jaw bone grafting will come around 8-10. And he will likely have to do something about his under bite as well. And, oh yes, braces.

I'll try and get some new pictures up soon, and certainly after the bandages come off!

Surgery Tomorrow

2009-04-27T20:14:00.002-05:00

The surgery is tomorrow. We will certainly appreciate your prayers.

Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, unto him be the glory in the church and in Christ Jesus unto all generations for ever and ever.

After Surgery Photo!!!

2009-03-20T23:50:00.004-05:00

Unfortunately they performed a hair transplant instead of the lip repair:)Actually we are confirming a Surgery date of April 28th. This date should be set in stone after another 2 weeks and assuming Titus passes his pre-surgical screen. (Thanks for the photo art Jeanette)

Hope this makes you smile!

Jon and Noah

2009-03-16T19:32:00.000-05:00

So as not to leave anyone out!!!

Titus and Micah

2009-03-16T19:26:00.000-05:00

Titus and a very proud big sister!

Leaving Meriter

2009-03-16T19:21:00.001-05:00

The 3 of us leaving the hospital. Doesn't Abi look great! You should see her now after starting to work out like a mad woman!

Hearing Test Passed

2009-03-16T19:01:00.003-05:00

I think i finally have the pictures working again. This is Titus passing his hearing screen in the hospital.

Finally, A Photo!

2009-02-28T16:37:00.003-06:00

Finally got my blog to take photos again. Here is one of Titus at the hospital. I will get some more up soon. Now we are just waiting for the report from the surgeon to tell us when the first surgery is. Titus is up to about 9 pounds and doing great.

All Systems Go!!!

2009-02-21T23:14:00.002-06:00

Well, I need to apologize for an extremely late entry. I will post a couple of entries now and then promise to be more timely in the future. First of all, thank you so much to everyone who has been praying. The more I hear from you all, the more humbled we are. I know there are people and churches all over the United States (and one in Tanzania) praying for us. It is amazing that God saw us a fit to be part of His plan in Titus’s life. Thank you so much for all your prayers.

As many of you know, the last week before Titus’s birth was a bit of a whirlwind. On Monday we found out that his bowel issues appeared to be no more. This was great news. We were however, still prepared for a 1 week stay in the baby Intensive Care Unit. The doctors all told us that most Cleft babies are transferred to the unit because of feeding issues and difficulty gaining weight.

Abi started having contractions at around 6pm Wednesday. They were severe and regular enough that we got up at 1am to head to Madison. We called our friend Rachael and she came over to sleep with our kids so we could go. Right before we left, Micah vomited all over her crib. That should have been our sign to stay homeJ She ended up throwing up 2 more times and Rachael treated Micah as one of her own. We are so blessed to have such good friends.

So we got to the hospital around 4am and the triage nurse told Abi that while she was likely in “pre-labor” it was going to be a while. We chose to leave, versus being admitted then and there. We crashed for a couple hours in my car, window shopped for some used cars, ate at the olive garden, and walked about 15 miles through target. At about 6pm we went back to the hospital and they admitted Abi. The contractions intensified, they broke her water at 12am, and Titus was born at 12:53am on Friday morning. I make it sound pretty easy don’t I? Well, Abi was a champ. Her best performance yet. She continues to amaze me with her strength and resolve.

I do have to tell one quick story about the birth. We knew we would get an “on-call” doctor that we had never met because we were going to a large birthing center with many OB docs. Abi was a bit concerned because Dr. Patricia Harrison, from Cherokee Iowa, had delivered all 3 of our prior kids, and she knew Abi and Abi knew her as well. So, in walked a young resident that I recognized. Within a minute we realized that he was Dr. Harrison’s student doctor who had performed two clinical rotations where we lived in little Cherokee Iowa. He knew us and we knew him! He had left Iowa for the residency program in Madison. He was great during the delivery! What a comfort to Abi! God is truly amazing in that he would work all that together for our good.

So…Back to Titus. He was born at a healthy weight. The cleft was present and pretty severe, but the symmetry of it is a positive as it often improves cosmetic outcomes. The three intensive care docs (there as a precaution) quickly left the room after seeing how healthy Titus was. He urinated immediately, which told us his kidneys were working properly. Not long after, he had a bowel movement and that was an answered prayer. His bowels are still working great and Abi and have resolved never to complain when he poops or pees at times that are inconvenient for us. We remind ourselves that it was an answer to prayer!

Abi and Titus were doing so good that they let us leave the hospital in less than 48 hours! What a dramatic change from what we were anticipating.

The following Friday (Feb 13) we came back to the UW’s Children’s Hospital for the cranio-facial clinic. We met with all the specialists (facial surgeon, ENT, oral surgeon, social worker, audiology, speech therapist) and got a lot of info. We also had Titus sized for a mouth appliance that may work to close his cleft a bit prior to surgery. We went back to Madison last Thursday (Feb 19) to get the appliance fitted. We are having some problems with it and may have to go back Monday to see if it can be adjusted. We are also waiting for a letter from the cranio-facial clinic to see when Titus’s lip surgery will be scheduled. It should be within the next couple of months.

At home Titus is doing great. The new mouth appliance has thrown a kink in things currently, but hopefully we can work through that. Otherwise, Titus is eating like a champ and not spitting up and choking on his food (which can be very common for cleft kids). His older brothers, Jon and Noah, are ecstatic to have him home. Micah, at 18 months, is also quite happy, but not so thrilled with sharing the attention of mom and dad.

Now that I have this post written, I will hopefully be more diligent with my updates. We plan on keeping the log going through Titus’s first year of life and the surgeries that will be in it. As always, thanks for your prayer.

In his grip,

Titus Emerges!

2009-02-06T01:27:00.004-06:00

After 36 hours of labor, baby Titus was born (2-6-09 @ 12:53am). 8 Pounds and 5 ounces. 19 inches long. Baby is very healthy and mom did great! Thanks fo all your prayers.

Make Like a Fetus and "Head Out"

2009-02-05T01:45:00.001-06:00

145am. Contractions every 3 minutes. We're heading down to Madison...

"Now, What exactly are you saying?"

2009-02-02T21:10:00.000-06:00

We had our final ultrasound today in Madison. A long day. We stayed up late with our kids and some friends watching the Super last night. And then we had to get up early to make a 9am appointment at the perinatal center (1.5 hrs away). On the way to the hospital I wouldn't say we were discouraged, but I would say that we were definitely prepared for the worst. I said to Abi, "These follow-up ultrasounds are no fun. Nothing good can come out of them for us. All they will tell us is that the cleft palate is still there and the bowel obstruction and enlarged kidney are noted as well." Or worse yet, they well tell us that they have findings that were not present on the previous ultrasound scan (which is what happened today).

We arrived for our scan and had the kids with us. Butch and Marian (Abi's parents) were kind enough to meet us and handle the kids during our appointments. We had our clinic visit with the doctor and then went in for the ultrasound.

We saw Titus's cleft again. It still appears to be quite severe, but his cheeks are chubby and he is weighing in at 7 pounds, 4 ounces. The sonographer continued to scan for growth markers and other developmental items. She alerted us to when she came to the kidneys and bowel. She methodically measured the bowel, noting it's size and then moved along to the kidney.

The view of the kidney was like nothing we had seen before. The right kidney appeared to be massive as compared to the left. 3-4 times bigger from what we could tell. "The kidney?" we were thinking. "We never really asked about potential complications with a kidney that big". Of course numerous thoughts were going through our minds about this. The most disheartening thing for me was when the ultrasonographer asked if our pediatric nephrologist (kidney doctor) had requested specific ultrasound photos yet. We told her that we had only been referred to the facial surgeon and the general surgeon. She printed us some pictures and left the room to consult with the doctor who was to read the ultrasound. "Great, another specialist we will be getting to know all too well."

We have come to learn that if everything found on the ultrasound is as expected, the time it takes for the doctor to come in and see us is very short. However, if there is something out of the ordinary, it takes a while. The wait for the doctor was a long one. We knew something was going on.

After what seemed like hours, the doctor came into the room. He started talking and it seemed quite surreal. He was talking about the kidneys and the colon and movement he was seeing. Sometimes using words I understood, sometimes not. After his second explanation I said something along the lines of "Now, What exactly are you saying?" He proceeded to tell us that (in so many words) he did not believe the ultrasound results he was seeing and that he wanted to scan Titus himself to confirm what the ultrasonographer had done. He scanned for about 15 minutes with the following conclusion:

The abnormalities in the colon that were present on the last scan, (The ones that would cause Titus to have 3 major surgeries before the age of 1 and potentially leaving him with lifelong bowel management issues. The ones that all but guaranteed Titus was going to be diagnosed with some type of genetic syndrome that correlated the bowel and cleft with unknown mental and physical repercussions down the road) were no longer apparent! Abi and I were doing everything we could to contain ourselves. Praise God! is all we could think of. The doctor seemed a bit shocked as to how such an obvious bowel obstruction could just disappear. I am sure there is a perfectly good medical answer that completely misses the point of what our God is capable of. Thanks to all of you who were praying for us.

Now, the doctor was quick to say that because of what he saw earlier, the risk of there still being something present is still there, so please don't stop praying. Abi is currently 38 weeks pregnant. Jonathan and Noah would have already been born by now, but everyone agrees that the longer Titus stays in, the better. Cleft babies still have a difficult time gaining weight early on, and so we want him to be as plump as possible when he comes out. Of course that is easy for me to say knowing that I am not the one birthing this baby (sorry Abi).

So why (if there is truly no more bowel issue) did this all happen? Why did we go through all this. Well, I just have to trust that God knows what he is doing. I know that it has caused me to draw closer to him. It has increased our understanding of the power of prayer in so many different ways. And I hope that it has encouraged you as well. Would God be any less awesome if Titus had numerous bowel problems? Nope. He just must want to get glory this way at this time, and either way, Abi and I are happy to be in His grip.

Oh yeah, and as for that huge kidney. They said it would likely be something very low on the priority list. Perhaps a urinary tract infection. It only seemed so huge because of the magnification. They actually stated that normally with results in the kidneys and bowel like they saw today, they would not even tell the parents because the stress it raises would likely cause more problems than anything clinically.

Again, thanks so much for your prayer, and please keep it up for another few weeks!

God Bless.

Praising God in Tough Times

2009-01-06T20:33:00.004-06:00

It truly seems easier to praise God when things are going well and life is smooth (in our eyes). This is not rocket science. We can even have spiritual highs where we seem so thankful for the life that God has given us and for the events He ordains to occur in our lives.

Other times it doesn't feel like it comes so naturally. Life is difficult and sometimes it hurts. Occasionally it seems impossible to finish the race we have set before us. Today was one of these days.

We traveled to Madison today for what we thought was a routine growth ultrasound and pre-natal visit. It was supposed to be our last visit prior to heading down to Madison once Abi begins labor (still looking like the end of January or early February for delivery). All signs prior to today indicated that we were dealing with an isolated cleft lip and palate. It was initially troubling to hear, but we were ready for the challenge the Lord was giving us.

Our ultrasound today revealed that Titus has a dilated, and likely obstructed, bowel. We were referred over to the Children's Hospital in Madison and fortunately the pediatric surgeon had an opening to see us in the afternoon. The bottom line is that Titus is having problems in his lower intestine. One likely diagnosis is that his anus failed to develop properly and/or did not develop at all (anorectal malformation is the technical term if you would like to google it). This will usually result in the inability of the baby to pass stool. If this diagnosis is confirmed, Titus will have to be transferred to UW Children's Hospital (from Meriter hospital) shortly after birth. A surgery will will then take place a day or two after Titus is born to allow his colon to empty into a colostomy bag. Another surgery will take place after 3-4 months (or so) to place a new anal opening in Titus's bottom. And, after that surgery is healed, the colon will be reattached to the newly formed anus. Lifelong bowel problems cannot be ruled out. Now, there is a chance that other issues (either better or worse) are present with his colon, but the odds are with the one mentioned above. We will just have to wait and see.

The bigger issue now is that we have seen a pattern. It is almost inevitable that a syndrome, of some type, is present in Titus. Not knowing exactly what syndrome is quite difficult. What other problems could be present at birth are only speculative at this point. Again, we will just have to wait and see. Some time after birth we will meet with a geneticist and start putting the pieces together.

So back to my point above. Praising God is not something to be reserved for when "the sun is shinning down on me" or when "the world is all as it should be" (again, in our eyes). I take great comfort (and perhaps I have said this before) in the fact that God didn't wake up one day and say "Oh...Wow...Little Titus has a cleft palate and a some problems with his colon. I didn't see that one coming." No, God knew this would happen. God knew the parents to whom Titus would be born. God knew the birth order that Titus would come. And God promises never to give us more that he will equip us to handle. And God will work it out for good.

On the drive home from Madison a song started on the CD player by the David Crowder Band entitled "Come and Listen". The bridge in the song repeats "Praise our God, for He is Good!" That phrase was as true this morning when we left our home as it was on our return from Madison tonight. We may not be screaming it from the top of our lungs at this point, but the fact that I could even mouth the words along with the song tells me that we are on the right track.

So when we think about weeks in the neonatal ICU, 5 surgeries before his first birthday, the possibility of numerous more (possibly life threatening) diagnoses, coordinating the lives of our other 3 children (all ages 4 and under) during this time, and the rest of the unknown, it is very comforting to know that we have a God who loves and cares for us. It was this God who knit Titus together in Abi's womb. It was this God who voluntarily allowed His own son to go through pain (much worse than Titus will ever experience) in the form of rejection, betrayal, beatings and a Crucifixion in order for us to be saved from our sins and have eternal life with Him. Remembering this makes it easy for me to see how true that phrase really is.

"Praise our God, for He is Good!" (all the time!)

More Good News!!!

2008-11-14T21:11:00.007-06:00

This is an updated Ultrasound photo of Titus. As you can see, his cheeks are getting bigger and so Abi can be reassured that at least some of her weight gain is, in fact, going to to the baby!

We went to Meriter Hospital today and had a fetal echocardiogram performed on Titus. They used an ultrasound to see if his heart was functioning properly and while it isn't 100% reliable the results were very comforting. It appears as though Titus has a normally developing heart and that we won't have to do anything invasive, or otherwise, with it's health. Praise God!

We also met with Titus's potential surgeon. Dr. Delora Mount is a UW surgeon. She was very kind and thorough and filled us in on a lot of the information we had questions about. She stated, as we had thought, that Titus's first surgery (on the lip) would be at about 6-8 weeks and his second one would be at about 10 months to repair the palate. Other surgeries, some cosmetic and some structural, will likely follow in later years. She also advised us to check out the other program in the state for Cleft Palate at the Medical College of Wisconsin to see which program would better suit our needs, both physically and situationally. I am certain she is a talented surgeon, but since Abi's parents live 1 block away from Children's in Milwaukee, we may look at that as well. Please pray for wisdom in this decision.

Everything else is still moving along as it should with Abi's pregnancy. If I could just get her into a house of her own before Titus comes, all will be well! As always, we covet your prayers. And as always God is Good! Next appointments are on the 24th for a Growth Ultrasound and Perinatologist Consult. We'll talk then.

This Just In!

2008-10-17T18:27:00.005-05:00

In case you have just joined us; God is good, all the time! We have received our third, and final, chromosomal test and the results were normal. This is the test where they match up all 23 chromosomal pairs (see picture) to check for abnormalities. Titus's all matched up like they should! Now this doesn't guarantee that there are no problems, but the results are still very comforting nonetheless. They also performed another test (I think it was for a neural tube defect) and it was also normal.

The lines have truly fallen to us in pleasant places (Ps 16:6) and we are excited as ever to meet baby Titus. He completely feels like one of the family! We probably won't write again until after our appointments in mid-November, but please keep praying.

In His Grip!

Genetics Test Results and Appointments

2008-10-13T19:15:00.007-05:00

The second of three Chromosomal tests came back today and it was normal! Praise God! We are feeling good about the possibilities that Titus's issue is mainly physical, but will await the final genetic test which should come in at the end of this week.

Also, we have begun scheduling more appointments in Madison. We have a fetal echocardiogram (to check Titus's heart) followed up by a consultation with the facial surgeon and feeding specialist on November 14th. Then on November 24th, we will have the growth ultrasound and neonatologist appointments. These appointments should be able to give us a better idea of what needs Titus will have immediately after surgery and in the months after that.

As always, we covet your thoughts and prayers.

FISH Results Are In!

2008-10-06T16:12:00.004-05:00

FISH (Fluorescence in situ hybridization) testing is performed when a specific structural abnormality or chromosomal disorder is suspected by a doctor. The FISH test was performed on baby Titus to confirm or rule out three of the likely genetic disorders associated Titus’s birth “per-fect” (intentionally not labeled as a “de-fect”, because Titus will be formed perfectly according to God’s will).

It is with great joy that we received the phone call today that confirmed Titus does not have any of the three disorders being tested for (Down ’s syndrome, Trisomy 13, or Trisomy 18). Thank you to all of you who were praying! While the more extensive results of the amniocentesis will not be in until next week, the professionals we worked with feel that the other chromosomal disorders, while still possibilities, are much less likely.

We praise God for his mercy and would ask you to continue to lift up baby Titus in your prayers. We will let you know what we find out next week. In the mean time we are setting up a consult with a UW surgeon who deals frequently with cleft palate and is highly regarded by her colleagues.

We continue to marvel at how God’s grace sustains us in these periods of waiting on Him. Isaiah 40:31 Yet those who wait for the LORD Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.

Ultrasound Picture of Titus

2008-10-03T09:58:00.003-05:00

We are posting the 3D rendering image of little baby Titus. These are not always the easiest images to make out but you can see the tip of his nose is below where it should be (it is the ball that appears to be attached to the upper lip), and his upper lip is kind of an island in the middle. You can also easily visualize the cleft line coming down the right side of his nose (it kind of looks like a nostril). You can also see his left arm and hand which is covering his left eye. Though the hand may look awkward, it is normal, as are all of his limbs heart and other organs (at least at this point). Titus will likely have the widest smile of any baby you have ever seen!

Seeing Baby Titus For The First Time

2008-10-03T08:42:00.007-05:00

We are so blessed to have a God who loves us! On Tuesday, September 30, 2008 we had our first ultrasound of this pregnancy while the baby was at 20 weeks gestation. The ultrasound showed a possible cleft palate and so we were referred to a specialist from UW Madison, at Meriter Hospital, who confirmed that Titus had a complete, bilateral cleft lip and palate. The following link gives a good description of the disorder as well as a timeline of surgeries that he will likely undergo. http://en.wikipedia.org/wiki/Cleft_lip_and_palate

“What exactly is cleft lip/palate?” I will try to describe it as simply as possible (and probably not totally accurately). When the baby is being formed inside the womb the cheeks bones (and ultimately the palate) grow forward towards midline and the nose grows down. They are naturally supposed to meet in the mouth at the center of the palate and on the face at the cleft (this is what causes the natural indentation between the upper lip and nose). In Titus’s case, both cheek bones stopped forming well before midline and the nose kept growing down, looking for its attachment. Therefore, Titus has no solid portion of the roof of his mouth, the tip of his nose is deformed, and he will have no upper front teeth. Based on the ultrasound, there is also some concern that his chin and jaw are underdeveloped.

It has been difficult to find pictures of “bilateral complete” cleft lip/palate so many of the images you can find on the internet are likely not as severe as Titus will be however we will post some examples to give you an idea of what the disorder is like. The following look shows a good example of what a bilateral cleft L&P can be like. http://www.joycreations.com/baby/connors_story.html This final link is actually a bilateral complete cleft palate (Thanks Monica!) but does not appear to have near the nose and chin deformities that Titus may have. At this point we are praying for, but not totally expecting, this good of results. http://www.emedicine.com/plastic/images/1271089-1279040-707.jpg

Bilateral cleft palate is obiously more severe than unilateral, but it also comes with a 1 in 20 risk of having a chromosomal disorder. We are currently awaiting the results to see if there is one. They will be completed in the next 1-2 weeks.

Please keep us and Titus in your prayers. We are certian that God will get so much glory from Titus's life. The passage we are holding on to is Isaiah 55:8-9 For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. We remember that God's ways are higher, and never lower, than our ways.