10/8/2005 12:00:00 AM
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5/31/2005 12:00:00 AM
One day at a time.
This morning right away we needed to hear Kennedy's heart beating and we could. It was easily found and she was moving around so much we could hear an arm or leg go in front of the signal as it made a "scratch" noise.
Although it is hard and we think about it every moment we are doing well. Carol spends a little time each day crying and we both spend most of the day thinking about Kennedy. Not that we are moping around - we dont. We spend most of the day outwardly happy and spending time with big sister - Kristin.
Kristin thinks about Kennedy every moment. She is constantly trying to make Ken laugh and give Ken a pillow or a toy. It has so far been such a blessing.
What are we hoping for now? We really want to make it to birth. We want to make it to the point where Kennedy is born and is able to be held and see and hear her loving family before she moves on. Whats the big deal? Well first - HAVE YOU HEARD HER HEART!?>!!?!?! yeah that is the big deal but also.
We want to show that Kennedy is real and a person and alive and a part of Team Huber. If she is born alive and takes a breath we get a birth certificate and most likely a death certificate. Aid Association For Lutherans will give us 5,000 for funeral expenses. And we will have something to remember our second daughter from for the rest of our lives. Kennedy will be baptised. This is important part of our belief.
Selfish? I dont think so.
5/30/2005 6:43:01 PM
5/29/2005 12:00:00 AM
5/29/2005 12:00:00 AM
Heart Beat is heard.
I was talking with the Dr. Saretsky's assistant today and she was rather upset that we ordered a heart monitor. She explained that she was specially trained to use the monitor and that she was upset with the companies that promote the use in home. I guess she has heard that some moms wont know how to use the monitor and will then be upset or scared when you cant hear the heartbeat.
Here is what I think. Moms go to the doc to hear the heartbeat all of the time. They watch and FEEL what the doctor is doing. This is a GREAT way to learn something - have it done on you. Ask someone in massage school. It is an easy way to find the location you want to get to. Same went for wrist locks and pressure points in martial arts.
Anyway we opened the box and within 90 seconds we were listening to Kennedy's heart beating. It was great. Carol just pointed out on her tummy where the doc usually places the monitor and demonstrated the hand motion that was used to probe. It was a piece of cake. We could even hear the "wind in the trees" which is some other sort of sound from the baby.
Anyway I am going in now to update my code so that I can easily upload the sounds of baby Kennedy. Stay "tuned".
I am also considering a feature to the Huberblog sites which will be the subscribe feature. You could log in and choose to be notified anytime I post a new entry. Sometimes things like this happen and I dont call and let everyone know.
Please post comments. It will be important to read years from now.
5/27/2005 8:36:51 PM
5/27/2005 12:00:00 AM
What can we do now?
Well for one we can be sure to enjoy each moment we have today with baby Kennedy. For starters I have ordered (I wish I had done so earlier) a heart beat monitor from babybeat.com.
For $50 a month we can listen and record heart beats from Kennedy and keep track of how she is doing. We are also doing this so that we know the moment that Kennedy is called to Heaven.
Carol has to wait and worry each moment right now for baby to kick. Then she is constantly wondering if it was a real kick or something else she has felt. So far Kristin has been able to talk to Kennedy, but cannot really hear anything from Kennedy in return. Kristin listens to my heart on occasion using a real stethescope sp? so I think she will get the idea of the doppler fetal heart monitor.
This monitor also lets us record the heart beats to a computer. I will take advantage of this (as you can imagine) and upload heart beats as we listen to them.
I have talked with our Pastor and he has assured us that we can and should do everything we can for Kennedy and that according to our faith Kennedy has a soul the moment she was concevied. This means if she does make it to birth she is due for baptism. If she does not make it to birth she is due a full funeral and we agreed at a grave side ceremony. Carol will be consulted when the time comes. Until that time she is somewhat out of the loop since I have taken this task on with her in the dark.
I can only hope that I am guided in a manner that is efficient and effective as well as timely. The preparations I can make now not only help me continue but will help everyone when the time comes. To be honest I have no hope that the time will not come. I am sure that my wife and I will be burying our second child, Kennedy, sometime this year. I can hardly believe it.
5/26/2005 4:30:17 PM
Easy Decisions that are hard to deal with.
Today at about 3 PM we had a call from the doctor. He was calling to let us know about the FISH results. From what I have read this test is very accurate and the way to test for trisomy 18,13 and 21 (Downs).
So we are left with the knowlege that our baby Kennedy will not survive. It is certain that she will die shortly after birth and likely that she wont make it to delivery.
This makes it really hard to deal with. We are going to do everything we can for Kennedy over the time that we have. Part of this is carrying to term. It was surprising to me that this was even a decision. I was told, NOT in a suggestive way, that there are doctors that would perform a DNC at this point for us. Let me make it clear that this was not suggested, it was mentioned only.
We will not do that. So far Carol and I agree that we are going to carry to term or as long as we are allowed. What does this mean for Carol and Kennedy?
It means that Carol will wait for the time to come. It will either be early or on time and either with a live baby or an angel. Each day she will wait for a kick from Kennedy. "I am still here" Kennedy will need to say before Carol can relax for that day.
Realistically Kennedy has fallen 2 weeks behind in development. As we go farther forward with th pregnancy Kennedy is likely to fall further behind until finally she does not continue to live. This is the hardest part right now. Carol has said that she feels that her tummy is getting smaller and she has lost 1 lb.
This week I will begin the task of planning a funeral for Kennedy. I cant say that I have ever been a part of the planning process before, so I will be taking this on alone. I want to get everything in line so that when the time comes Carol can help make decisions but not need to wait for information. If I can make anything easier for her I will.
Overall we are trying to be as positive as we can. There is a lot that we can do and we have a lot to look forward to. There is a chance that Kennedy will make it to term and that we will be able to see her.
5/26/2005 12:28:18 AM
Newest pictures of Kennedy
Lips with Clenched fist over right eye:
I think in this one you can see the left hand clenched at the bottom. Face is to the upper right.
Another Small Profile:
5/24/2005 4:58:14 PM
Perinatologist .. Level 2 Ultrasound.
Yesterday we went into the Perinatologist to have a level two ultrasound performed. It looks just like any other stomach ultrasound but I guess GE put a pentium in it or something. It is also one that is capable of 3D images.
The tech was very nervous and was unsure about a few things. I was sure what was wrong after about 10 minutes. When the tech left the room I mentioned it lightly to Carol and we waited for the doctor to return.
He did return with the worst news I have ever heard in my life. Kennedy has multiple problems. There isnt a good way to list these, so here goes.
1. Genetic defect
2. Spinal Bifida
3. cyst on the brain
4. Clenched Fists
5. Clubbed foot
6. Banana sign
7. A VNC or VSC heart defect
So we were asked to perform a amniosyntisis which we did. The results should be back in 48 hours. The real story here is that the doctor thought Kennedy might be Trisome 18. To most people that would be *like* Downs Syndrom. But T18, as it is called, tends to affect every organ system in the body and babies, if carried to full term, they dont usualy make it, have a 90% chance of dying before age 1.
From what I have read online the ones that do make past age 1 dont have nearly as many issues with the body as our little girl.
Carol and I have vowed to do everything we can for Kennedy and we will share what that means here. Right now it means waiting and praying.
5/24/2005 12:02:44 PM
Kennedy hasn't developed?
Early in March we were told that Kennedy wasn't viable, there was not yolk sack etc and that she wasn't likely to carry.
I had posted this and I was very happy again. We had gone through 2 1/2 weeks wondering what we should do. We had already made the right decision to wait and NOT DNC or D&C I dont care. It wasn't going to happen. Carol was just as sure as I was.
Carol decided to have another ultrasound at the end of the two weeks and we were happy to see Kennedy was doing great! As I posted, there was a heart beat and she was growing just fine.
Dont believe the doctors all of the time. The decision to tell us to DNC was made on partial information which was admitted to be wrong by the doctor. Regardless of the future the idea of DNC was still wrong.
5/24/2005 11:56:03 AM
Today we found out we were having Kennedy!
Today was the day that we found out we were having Kennedy. We had been trying for over two years to get pregnant and now we are sure.
I had posted this in my blog at the time and I can remember how happy we were.
Scheduled a doctors appt. and waited to see.
5/24/2005 11:50:06 AM