Thursday, June 30, 2011

Hallelujah! Good News on the Test Results

Even though we felt strongly that the test results for the amniocentesis would come back negative, it was still very exciting to hear the words.  CHOP called Brandi today to let her know that Jordan's chromosomes looked good and that he tested negative for any other birth defects.  We had been waiting for this phone call all week because that significantly increases the chances of survival (from basically 0% to the 60-70% the surgeon gave us before).

Awesome news for Jordan!

Thursday, June 23, 2011

Good to Be Home

Although we were surprised this morning to wake up at 8:00am without an alarm clock, it definitely felt like we had slept in.  Still tired from a long week, we got up and headed home - a four hour drive from Kansas City to Hays.  We were excited to see Caleb.

When we finally pulled up to Caleb's grandpa and grandma's house, we didn't receive quite the reunion you would hope for as a parent.  Caleb saw us, realized who it was and hid behind their TrailBlazer.  No tears, smiles or big hugs.  Apparently, our son doesn't handle transitions well.  He finally warmed up to us when I gave him his new toy - a set of Velcro frog mittens to play catch with.  As the evening wore on he definitely caught up on hugs and Eskimo kisses as he finally showed us he was excited to be back home.

It does feel good tonight to be in a familiar environment.  We will hold on to a sense of normalcy at least for a few days.  Many big decisions are still coming up and we have more appointments in about four weeks (for both Caleb and Jordan).  Thank God for a safe trip and that, overall, it went very well.

Wednesday, June 22, 2011

A Much Better Day

For the first time since we discovered Jordan had CDH, we received some very good news. We were introduced to Dr. Adzick, the head surgeon of the NICU and one of the significant reasons we chose CHOP. Our first impression of him is that he is a remarkable man. He recently received surgery himself, had just got out of an operation this morning and had board meetings to get to after visiting with us. Dr. Adzick mentioned he is originally from St. Louis and he then told us with a smile, "The best people are from the midwest."

Because Dr. Adzick was so busy yesterday, we did not have a chance to meet him in person. By this meeting, he thoroughly reviewed all of our results from yesterday. Apparently, the ultrasound detected better lung volume than the MRI. He gave Jordan a much better prognosis and mentioned that his chances are calculated at somewhere around 60-70% (based on their research). Dr. Adzick went on to mention that this is just a statistic. Jordan's chances are 0% if he dies and are 100% if he lives. It is up to Jordan and how he responds to treatment.

As for the fetal surgeries, such as the tracheal occlusion, we were anxious to hear what Dr. Adzick had to say. He has been in this field for 30 years and has seen the various methods used in trials. Even though they will soon begin testing this procedure again, CHOP does not participate in the fetal treatments for CDH. He says they just haven't seen the evidence to support that is has enough benefits as compared to the risks. Although they are conducting the experimental treatments in Europe, Jordan is not severe enough to qualify for tracheal occlusion. Jordan's case is extreme, but the good news is that his heart looks very good.

After our introduction to Dr. Adzick, we received some very good news about financial assistance. One of the infants that had a successful operation at CHOP belonged to a wealthy and generous family that made a large donation to help families with the cost of travel. CHOP will pay for and arrange our future flights. Also, with some persistence, it sounds like we may qualify for partial financial assistance of what our health insurance doesn't cover.

I was able to convince Brandi that it was important to tour the NICU before we left the hospital. Understandably, she was concerned she would break down to see infants under treatment. It ended up being a very good thing and it wasn't as overwhelming as we expected. The social worker giving the tour was very knowledgeable and gave us a ton of information. We actually got to see an infant on ECMO. They sedate the infants so that they don't fight treatment and they are hooked up to breathing machines, an IV, a feeder, medicines, a warmer, etc. Everything is closley monitored and the environment is quiet and sterile.

Brandi and I had to have our blood drawn for gentic testing and Brandi had an amniocentesis. We should get the results over the next few weeks. Our flight to KCI will leave at 8:55pm tonight - putting us in KC around 11:00pm. We will spend the night there and drive home in the morning.

Overall, today was much better. We still want to enjoy the pregnancy as much as possible and we feel that Jordan has a fighting chance.

Tuesday, June 21, 2011

In the Right Place

Today was an emotional and long day. CHOP is huge! The staff is excellent and very friendly. By the end of the day, we definitely felt like we were in the right place for this pregnancy. They were very knowledgable about CDH and are the best in the world at providing special care for infants.

Our day was planned out nicely for us. First, we had a heart echo. That didn't take very long and the results looked good from what we heard. Then, we had an ultrasound. This was not your usual ultrasound - it lasted about two hours. Again, they took measurements and tried to rule out any other abnormalities. After a bite to eat (which, believe it or not, the cafeteria food was excellent), Brandi had an MRI. The MRI lasted about an hour. Both Brandi and Jordan couldn't keep still. Brandi was uncomfortable, so they kept having to retake the pictures. Jordan must have heard the loud sound the machine makes (I had to wear earplugs) because he was moving like crazy. The MRI gives them a better look at the tissue or organs.

From 7:30am to about 5:00pm, Brandi was tested thoroughly. Then, it was time to meet one of the doctors - what we had been waiting for. The prognosis is not good. Jordan had an abnormality where the diaphragm didn't fully complete. The LHR (lung-to-head) ratio is 0.8. The lower end of CDH is 1.0. From what we understand, they had a hard time even detecting a left lung. The lung volume should be somewhere around 26cc; Jordan's is 8cc. If that wasn't enough stacked up against him, his liver is also up - the most significant factor of the severity. This means that a high volume of organs that are supposed to be in the abdomemn are up in the chest. These things added up significantly lower the chances of survival.

Tomorrow is an important day for us. We have to cancel our morning flight to get the amniocentesis. This test will determine if there are other present birth defects that haven't been determined, such as down syndrome. We had chosen not to perform this test up to this point - now it is essential. If Jordan has another defect, his chance of survival is practically 0%. If they don't find anything else, he still has a fighting chance (we heard 31% as a number thrown around). After the test, we will meet with the lead physician and our social worker. It will take up to 4 weeks to get the full results.

Today was hard as we could barely find the strength to walk out of the hospital. It is so hard to know that our boy is going to face extreme challenges. We feel like we've done what we can by providing him the best care. The rest will be between Jordan and God. We continue to pray for his strength to fight and that we will eventually hear good results for this test tomorrow.

Monday, June 20, 2011

Traveling Updates - First Time in Philly

We made it to the KCI airport safely this morning and had a connecting flight in Tampa Bay, FL. We made it to Philly around 5:00 EST. This is the first time to Philadelphia for both of us. The gentleman driving our hotel shuttle was great. He has a little one on the way (they are in their 16th week). He told Brandi and I, "As long as you have each other, you can do anything."

I tried to tip him for the ride and he handed back my money with a smile, "We're in this together. No one wants to see their kid struggle with something like this."

Meeting the driver made a warm welcome to the city. We are hoping that tomorrow goes very well.

Sunday, June 19, 2011

Happy Father's Day

We want to wish all dads a Hapy Father's Day. Michael awoke this morning to find Caleb rubbing his face. In a very serious tone he said, "Dadda, you're pretty Dadda.". Michael thought to himself, "Happy Father's Day."

It was hard to say goodbye to Caleb today on Father's Day. He is staying with his grandparents and friends as we head out to our first appointments in Philadelphia. We made it to Kansas City and wil spend the night at Brandi's brother's house. Our flight is early tomorrow morning and we will be traveling most of the day since we have a connecting flight in Florida.

Friday, June 17, 2011

Scentsy Fundraiser for Jordan

There are some neat things going on out there to help baby Jordan.  One of our friends is hosting an online Scentsy fundraiser.  She will donate her commissions (25% of sales) to Jordan's Benefit Fund.  We discovered this fundraiser through Facebook.

If you are interested, please visit

The Inspiration of a Child

Not only have we been inspired by the children who have fought through this before, our own son is an inspiration.  Caleb fought through many things when he was born.  His first couple of years were filled with many doctors appointments, surgeries and emotional ups and downs.  Born with right-hip dysplasia, we barely even notice now that he had this at birth.

Caleb asks us to pray with him each night at his bedside.  "Dadda, can you pray..?"  We'll respond, "Sure, Caleb.  What would you like to pray for?"

Without ever asking him to specifically pray for Jordan, "God, thank you for baby Jordan in Momma's tummy."

That's all we need to hear to know that he understands more than we realize.

Thursday, June 16, 2011

First Trip to Philadelphia

We have scheduled our flight to CHOP in Philadelphia.  Our departure is scheduled for early Monday morning, June 20th (this Monday) out of Kansas City, MO.  Our appointments are all scheduled for Tuesday the 21st.  We will return to KC on Wednesday the 22nd.

CHOP let us know that they will not verify our appointments until Monday - the day before our scheduled appointments - when we will be in flight.  We are disappointed that the appointment is not more concrete considering the distance we are traveling.  Understandably, they need to get a feel for the week's emergencies and see those patients first.  Just part of the process...

*Update: We were able to talk to our contact at the hospital today (6/17).  Our appointments have been scheduled and we know where to go.  They apologized and said it has been very busy.

Benefit Fund for Baby Jordan

Close friends of ours have kindly established a fund on the behalf of baby Jordan.  Now people can contribute both online through PayPal and by regular mail or in person at the Bank of Hays.  Please see the information on the right-hand side of the website for more information.

We are truly blessed to have so many people who want to help in so many ways!  We cannot find the words to express how thankful we are for everyone's support...

Wednesday, June 15, 2011

Appointment Rescheduled in Philadelphia

Overall, today was a very emotional day.  We had been excited to get our appointments moving in the right direction.  CHOP was able to move our first appointment up to the 21st of June.  Tuesday will be here before we know it.

Children's Mercy of KC called today to let us know Jordan's lung-to-head ratio is 1.0 - on the wrong side of the severity level.  They also told us that the liver is partially up in the chest - one of the other poor indicators.  To say the least, this was very hard to take; especially for Brandi.  We want to see the best for our son and you just can't believe this is happening.

Brandi has been feeling a lot better after visiting with friends.  It was truly amazing when my boss was able to connect us to a family that has already gone through this before.  In fact, their daughter faced extreme odds and received a fetal surgery.  We've actually got to speak with someone who's daughter has survived!  What an inspiration to stay positive and focused on Jordan's survival.

We have several concerns including the time that's going to be needed for travel and funds.  But those are normal thoughts for parents to have.  Brandi and I give each other strength and we are doing our best to remain in God's peace.