Mixed Bag

Reading the many comments and emails has brought Becky and I renewed strength.

Today we attended the local neighborhood church that we have attended on infrequent occassion's. Today's sermon had a message that struck our heart directly on the events that are effecting us. The sermon discussed the Counsel we seek in our daily life. It talked of the importance of seeking professional counsel (Doctors), supportive counsel (friends & family), experienced counsel (Stephen's Mom), and spiritual counsel (Pastor Eddie Adams). After church we sat down with Pastor Eddie and informed him of the situation that has been put before us. We asked him if he would be our spiritual counsel no matter what the outcome is for us. Eddie made both Becky and I feel a stronger bond in our faith with the words of wisdom that he offered. His parting words to us will forever makes us laugh as he said enjoy the remaining time period that you have for you will never get this opportunity again with JJ, "so take him to Six Flags and do things with him". I don't foresee us going to Six Flags but I know that we will try to do some more memorable things than staying at home.

My playing hockey has led to an avenue when so many of our friends and family members can escape and have a great time. Our most recent game, even though we lost 3-2 proved this point as for hours after the game we all shared so much time and joy away from our daily lives. I have vowed to continue to play as long as it brings us these getaway moments.

It has been tough as Becky has already informed me of what she would expect for a funeral for JJ, while at the same time working on setting up JJ's room. I admire her for how she is handling everything. Since Becky works in a pediatric hospital she knows all too well what medically is ahead of us. I know she does not share all of this with me, but I have tried to relax her fears. My Mom once told me one of the hardest things she ever faced in raising me and my brother was separating between being a nurse and being a Mom. I keep reminding Becky that right now she needs to be the Mom and let the nurse step aside.

Knowing that we have all 4 of our pieces of Counsel in place has allowed Becky and I to feel more comfortable in our roles that we must occupy. We may never understand in this lifetime why God has brought this upon us, however it is the way we handle this that may help someone else.

MRI Head Stand

Here is one of the images from the MRI.

More Bad and Good News

To start off with something good today we had the echocardiogram performed. The Doctor who was scheduled to see us got stuck on another case and a coleague was brought in to review the films. The funny thing was the new Doctor was not upto date on Becky's condition and spent an extra 20 minutes reviewing the films and thinking he had to break the bad news to us of the diaphragmatic hernia. He was quite relieved to know that we were already aware of everything. I bet he was glad he was not walking into tell us all of the bad news. So he felt good to tell us that everything with the heart is good and satisfactory. Normal size and shape with the valves working good.

However good this news was it was not good enough to beat the bad news.

The fetal MRI was reviewed by Dr. Twickler (a specialist who has recently completed a study on children born at Parkland with CDH). She was able to calculate and measure the space of the size above the diaphragm and to locate all of the organs that are placed in that area. She discovered that the heart is fully located on the right side with lung development occuring on that side. The stomach and small intestine are located above the diaphragm. The key measurement of survival in these instances is based on the placement of the liver and the amount of its inclusion. If 20% or more of the liver is above the diaphragm the chance of survival are nill. In our case it was found that 16% of the liver is above the diaphragm. This puts our chances of survival at 10 - 20%. It was also noted that development of the left lung could not be seen on the MRI (not a pleasant item to hear at this point).

Both Becky and I are faced with several decisions: terminate the pregnancy, continue with the pregnancy, pursue experimental surgery in San Francisco, or explore other forms of aggressive treatments.

With the fact that Becky feels little JJ moving around (which I have felt too) and seeing his heart beating we have decided that it is not our place to play God and terminate the pregnancy at this point. If JJ is one of the survivors of this his life could be healthy and limited in only certain apsects. Had things been different in the earlier tests we may have thought differently. We will leave the decision of life in God's hands at this time. Though we both struggle to understand the cards we have been dealt we both stay united in our decisions. We have made a pledge that once JJ arrives we will spend every minute of time that we have with him. Becky will even try to enjoy every elbow he throws and every knee kick he makes. Though she does have some issue with him jumping on the bladder.

We have an appointment with Dr. Horsager on Aug 1 to determine the rest of our options. I ask that you keep us in your thoughts and prayers as we venture down these tough decisions.

Not In The Right Places

This image shows the stomach (dark bubble) clearly located on the left side of the chest. The stomach is also above the diaphragm and has pushed the heart to the right side.

We have been graced with good news. On Wed 7/18 the genetic testing came back and it was found that the chromosomes are all normal and no genetic problem was found. This is positive, because it opens many different options for us, but it unfortunatley sets us up with many more tests to go. Next is a fetal MRI to see how much of the organs are located above the diapragm and a fetal ecocardiogram to see what effect everything is having on the heart.

Johnathon Hampton Janis (JJ) - wave for the camera

Update

It's been a crazy week and a half. I decided to sit down and try to bring you upto date as to where we are now. I guess the best place to start is July 7. My hockey team the Komets finished in first place and were heading to the Stanley Keg championship. The week started with both Becky and I excited of this opportunity to participate in such a big game. We were also excited to see that on July 11 we would be finding out the sex our unborn child (or as I affectionatly now call it "fetus").

Though we fully expected it to be a girl, and Becky even referred to it as a she, on July 11 our world turned around more than we could ever expect. We discovered our future little girl was a boy. Just like every Janis boy he had to be difficult. Our good news turned to terror as we watched the sonogram tech constantly looking at his heart and its placement. She finally excussed herself to go get the Doctor. Becky knew what she was seeing but did not want to confirm it to me. The Doctor came in and repeatedly looked over and over and finally showed us that the stomach was located where the heart was suppose to be and the heart was located toward the right side of the chest.

We spent some time with the Doctor as she explained what we were up against. She then said she would get with a specialist at St. Paul who could make the final ruling on what was going on and what needed to be done. By noon we had received a call from the specialist and we had an appointment for that afternoon. We showed up at St. Paul and Becky had another sonogram. The sonogram showed that the baby had a Congenital Diaphragmatic Hernia (CDH). We then attended a genetic counseling session. The Doctor gave us an option of performing an amniocentisis, going home and accepting the facts, or termination of the pregnancy. We did the amnio as I held Becky's hand and watched the Doctor put the needle into her stomach. Not to sound strange but I was praying that the fluid did not start shooting out like a sprinkler.

Fortunately everything went well with the amnio and we left knowing that our chances of the baby surviving were 10%. We went home to accept the fact that our baby would not survive. My parents came to town as I was scheduled to leave town the next morning to go to a meeting and I was wanting Becky to have a good support network in my abscence. We had many friends who called and stopped by to offer their support.

We now played a waiting game to see what the genetic testing of the amnio would show . . . .

A Little History

Just remember our little one starts off as a blip or "ziggy" as I affectionately call him. Here is a little game, try finding "ziggy" or playing connect the dots either way it is real fun.

Welcome

Welcome to the first posting of our family blog. This blog will act as a means to update our friends and family members with the ever changing aspects of our life. I hope it proves informative, delightful, and responsive to you. It is with much love and thanks that we appreciate you stopping by to read our latest posting.

Love,
Becky & Stephen