Praising God in Tough Times

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!!!

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!

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

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!

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

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

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.