It's Kennedy's Birthday!
Today is the 1 year anniversary of Kennedy's birth.
For those of you who have been around to watch her grow and were there when she passed, thank you.
Our only plan for our daughter today on her birthday is to visit her grave. We can pay our respects and share that we love her.
There really isnt anything profound to say a year later. Carol and I have learned to live like Kennedy was a part of our lives and to not try and act like she wasnt around or it didnt happen to us. We share with coworkers the fact that today would have been her first birthday and that she is now gone.
Today we had a department birthday party for anyone in the department and I shared that it was Kennedy's birthday with them.
10/10/2006 4:03:13 PM
Dear Mommy and Daddy
I just wanted to let you know,
That I made it home.
The journey wasn’t an easy one,
But it didn’t take too long.
Everything is so pretty here,
So white, so fresh and new.
I wish that you could close your eyes,
And that you could see it too.
Please try not to be sad for me...
Try to understand.
God is taking care of me...
I’m in the shelter of his hands.
Here there is no sadness,
No sorrow and no pain.
Here there is no crying,
No hurt for us again.
Here it is so peaceful,
When all the angels sing.
I really have to go now-
I’ve just got to try my wings!
8/10/2006 12:19:22 PM
I didn’t think it would be hard to look at Kennedy’s pictures or the few things that belonged to her while she was alive. I was wrong. The sorrow for what she went through and the regret and feeling that I should have prevented or stopped it is growing. She came out so pure and beautiful and quickly proved she was going to be with us for a while. Quickly my fear of loosing her became a fear of the unknown.
I didn’t know how to deal with a baby that would stop breathing. I knew that we needed to let go, but how can you tell your wife that we shouldn’t rub or rock her when she is in these episodes? You aren’t consoled by the idea that your sorrow would have had been greater if you had never hold her and gave her directly to the ventilator.
She was a baby and I can remember her coming out and my amazement at how beautiful she was. How strong she sounded and perfect she seemed. I can only imagine her looking at me and wondering each time she stop breathing why I don’t help? Why don’t you do something to make it better? It must have been a somewhat simple feeling, since she was a baby, of longing for her Dad or Mom to just help. It shouldn’t have been so hard to be a baby, but it must have been for her.
And then her eyes became less focused. She stopped following your face and voice. Her movements became less as the episodes became longer. It couldn’t have been harder on any one of us. I can say we did the right thing, but it certainly has its price.
Do we think about Kennedy everyday? Absolutely and without exception. I think that some people would say that we will learn to forget or it will get better over time. I know that I am not that type of person. That will not happen for me. I will remember as vividly and be as sorrowful and regretful and shamed that I am happy to have had her the day before I die as I am today.
2/24/2006 1:30:59 PM
Its been so long.
It has been so long since I have visited the site. Kennedy has been gone for over 2 months. Her headstone is in place, we have her birth cirtificate and all that as well.
On the birth cirtificate it was sad to see DECEASED instead of the birth number. I suppose they dont want you using the document for credit or something 18 years from now. It was just sad.
Carol and I had a good conversation about Kennedy last night and although it is tough to talk about it we still manage to share with each other. Kristin has helped us deal over the past weeks.
I hate to feel like I am loosing what I can remember of Kennedy. It is harder to remember the details and some of the joys we had. It almost seems easier to remember the lows.
You walk around with a regret and a anxiety that you forget something. It is like when you are laying in bed and you think you left your garage open. You have to get up and check right? Well there is nothing to check. You feel as if something was forgotten or lost and you cant get up and check anything - It is harder to sleep now for me and Carol then it was immediately after she left us.
I took the baby carriage apart this weekend. It was just kinda sad since that was one of the last things around that was hers - or meant for her. We only laid her there for 30 seconds or so. The nurse told us to make sure and lay her down and get some sleep and all of that. I am glad Carol didnt listen. I am happy that together we made good choices like NOT laying her in the carriage alone for any period of time. I shiver to think of the minute she was laying there without her parents immediately to her side.
You feel as if you let your child down. You couldnt be a real dad to her. You just werent. You were not capable of giving her what she needed. I couldnt feed her. She could eat in the traditional manner. It just doenst make you feel good at all and you question everything you do now and relate it to what happened in those 42 hours.
12/13/2005 9:49:45 PM
Donations.. thank you
Many of my fellow employees at Business Integration Group got together and gave my family kind words, cards, and even some money. We appreciate all of these and BIG has been extremely supportive of me and my family and individually your kind words are very helpful on my first day back.
We took the donations and gave to http://www.americanforests.org/. We chose to give in rememberance of Kennedy which means we should get a certificate in the mail.
Our reasons for choosing this sort of contribution are many and we appreciate your support.
Thank you so much.
10/27/2005 7:11:00 PM
Visited the Grave..
Today Kristin and I visited Kennedy's grave. It is in a very nice location and is still covered with the grass that was removed. It was hard to see the grave with no headstone. I guess this it is normal for it to take weeks for the headstone to be finished.
Carol was understandably unable to come to the grave. Kristin and I went to place some flowers from the many that were sent in. Kristin had a good time placing the flowers and we talked about what we were doing the whole time.
It is still as hard as ever thinking back on what has passed. Nothing makes it easier. We certainly dont cry as much, but we tend to walk around in a transe. Kristin helps. She keeps us focused and talks openly about Kennedy. Carol and I talk alot about what we are thinking and we are much closer now than years past. Kennedy is in our thoughts each minute.
Those of you that have been praying for us and have sent more flowers, thank you!
10/17/2005 9:21:47 PM
The funeral was beautiful.
The funeral for Kennedy was beautiful. Carol, Kristin and I were picked up by a black limo and driven to the funeral home and back. The flowers that everyone sent were just great. In attendance were:
Pastor Haught (our Pastor from Atonment Lutheran Church)
Wanda and Charles Head (Kennedy's Grandparents)
Randy Baumanns (Kennedy's Uncle)
Julie and Jacob Davis (Kennedy's Aunt and Uncle)
Charles Ward (Jasons Best friend)
Kennedy looked as beautiful as ever. We were glad to be able to allow everyone in attendence into the room with her. Her hair was soft blond curls, her hands were out and soft as ever. She was sleeping and at peace. Carol and I were able to spend another full hour with our daughter in body and spirit.
My work, BIG sent flowers along with the grandparents, family and Phoenix Parenatal associates. The doctors at PPA that we dealt with were just wonderful. Drs. Allare and Iani, thank you for everything.
10/15/2005 11:32:15 AM
Sorry. Many of you have expressed that you do want to send flowers to the funeral and I didnt post the address.
Phoenix Memorial Park and Mortuary
200 W. Beardsley Road
Phoenix, AZ 85027
623 434 7000
Thank you for the emails and the support.
10/13/2005 4:41:09 PM
Kennedy is gone.
Kennedy left us last night at 6PM. Carol had handed her to me and I watched her for about 4 minutes through another episode. I took her to Carol as she was passing. It was very peaceful.
The funeral service will be Friday at Phoenix Memorial. It is a closed service for family only. If you would like to send flowers for the service that would be appreciated.
Kennedy gave us everything we had hoped for and more. She was perfect. There was nothing wrong with her in the least. She wasnt able to stay with us, but she tried so very hard. I will continue to post my feelings and the weeks go on.
Your emails are greatly appreciated. We love reading the support. We are doing anything we can to be positive and you are helping. Thank you all.
10/12/2005 7:35:27 PM
Just a picture for you.
She is beautiful.
10/11/2005 8:06:02 PM
The nurse who arrived couldnt get the G tube into Kristin either. There is a blockage about an inch down. I tried again a few hours later.
Kennedy is getting darker when the episodes begin and is staying darker longer. She is taking longer to recover as well.
So we are feeding her sugar water to ease the hunger pains. We are told there really isnt any pain involved. Carol has gone on a hunger strike almost completely. I was able to make her eat 1 chocolate cookie and drink some coke.
So as I write this Kennedy is sleeping to my left and Carol is thinking of taking a nap. K is pink as this page and looking just fine. She has a slight wimper to her breathing, but it is easy - beleive me.
Her last episode lasted over 10 minutes and she went without breath for at least 5. Her heart nearly slowed to nothing or slow enough that I was going to check using the stethescope. You wouldnt believe how dark she gets and then the gasps.
If you are considering following our path with your child realize this - she very well may stop breathing and turn dark blue for minutes at a time. She may do this many times before she finally passes. The final episode may take 1 hour to complete. You will start hoping that this is the last time. You will hate yourself for feeling this way. You will want to see her stop struggling and gasping for air so that she can make it to heaven.
Then she will violently gasp and cry or whine very pitifuly and begin to wake up and gain color so that you can love her for another hour or so. And you will wait for the next time she is going to turn the darkest most death grip looking blue you have seen in your life.
10/11/2005 7:59:53 PM
How do we feed baby?
Its much worse than you think. I inserted the tube slightly wrong this time and there was a tiny bit of blood on the end. The nurse is on her way over to show me how - again.
Now is a good of time as any to tell you how it goes with Kennedy. Since she was born she has stopped breathing periodically. She just stops and turns blue. This goes on for minutes - 10 sometimes. She has had almost 20 of these since she was born.
The way she comes out of it is to gasp and cry a little. It is a reaction to the acid that forms from the lack of oxygen - I was told.
So every 3 hours or so my daughter stops breathing. She turns blue - almost black. She then gasps for air for minutes afterwards trying to stay alive. Carol trys not to cry or at least to not be histerical, but it isnt easy watching your child turn from the pink on these pages to deep dark blue.
And then we cant feed her so we dont eat. Carol and I cannot bring ourselves to sit and eat until after baby is content. This last time I wasnt able to get the feeding tube in, so we wait. I think I know what I did wrong - I was pushing it up and not back (if you point your finger at your nose and point it to the back of your head).
This is the most difficult experience I have had in my life.
Last night Carol allowed me to sleep first. She made it until about 4 am or so. She woke me up and I spent a wonderful 4 hours or so with baby until she started to turn blue, so I woke Carol up. I cleaned Kennedy's eye, I changed her diaper, I kissed her and held her all morning.
Carol is doing this the other 20 hours of the day. I am support. Carol needs this time as much as Kennedy needs Carol.
10/11/2005 2:33:47 PM
Kennedy has arrived!
Kennedy arrived at 12:09 am on October 10th 2005. She weighs 3 lbs 11 oz. She is 15.5 inches long. As I write this she is 20 hours 28 minutes old. WOW. I didnt think we would get this time and we did.
The staff at Banner Good Sam Pod C was outstanding. The staff OB was very nice. The delivery started and was complete in 11 hours. Carol was induced with petocin starting about 3, so really 9 hours.
Kennedy came out and we thought we had only seconds. I could barely stand. One moment Carol was pushing and the next she was out. She is beautiful. She looks just like her Big sister. She is perfect and has already given us more than we have given her.
I will write the next post later detailing the last 20 hours. It has been filled with highs and very, very low lows - be prepared.
As I write this I am at home with my wife and second daughter. Carol is on the second couch holding my daughter. Life is hard but very good.
10/10/2005 11:48:31 PM
Who would have thought?
Who would have thought that going to church would have made us miss our chance?
I was sitting in church and my phone rang. I paged the number as requested within 10 minutes. I STILL have no response. I STILL have no response. Now they have given the bed away.
We were asked to come in and Erin would make it work, but I have a feeling that we will be sitting in a waiting room until we go into spontaneous labor.
I guess we should have stayed home and answered our phone immediately. My fault.
Carol has called back and Erin tells us there is a bed available. Stay tuned for the news.
10/9/2005 3:17:39 PM
Another Update #2
Called the hospital about 4 times today. Shauna was very nice and Carol was happy to hear that we wouldnt be called until tomorrow (Sunday) morning.
I have talked with Pastor Haught and he has told me that I can baptize Kennedy if absolutely necessary. I hope he is able to make it in time, but Sunday morning might put him a few more minutes out than usual with service and all. I certainly appreciate his support and willingness to help.
Carols sister Cinthia Schmidt is down from San Jose and she is going to try and stay later than planned to provide support. Really we thought that we would be giving birth by now. It is almost harder knowing that it is coming and having to put it off.
We really just try to stay positive and do normal things. I went to strabucks this morning, bought an IPod Nano (black) and I am working with Volvo on a new car via email. But everything we do is wrapped around calls to the hospital and this feeling in your stomach. Carol is at the movies right now while I watch Kristin and her friend Kelsy.
10/8/2005 8:41:55 PM
10/8/2005 12:00:00 AM
We were told to call late tonight to check if we are going in over the night. Right now we are not thinking we will.
It was nice to be home and have time to plan and relax. Carol is relieved that the time isnt here yet.
Is there anything you can do? Pray. I dont know of anything we need at the moment. We do appreciate the phone calls and emails, but the next few days I probably wont be doing anything other than calling family or posting here.
10/7/2005 7:14:51 PM
Update - nothing really new
We havent been called in yet. I was told to call back 3-4 PM. Since we are T18 we are being told that we should get priority on the list at least.
Carol is nervous and little anxious. She is preparing mentally and the extra time we have has really helped us plan and prepare.
We have been talking to Kristin, our 4 year old, and telling her that baby might not come home. She really doesnt get it because she keeps talking about "but when she DOES come home then.." and we cant disagree with her that much.... She understands that something might be wrong with baby which will make her go up with Jesus, and I think she is preparing for it as well. She started asking some spontaneous questions today and talking about how she wants baby to come home for sure.
10/7/2005 4:53:04 PM
We are scheduled!
We are scheduled to be enduced friday 10/7/2005 at Noon. We originally were talking about Thursday at 6PM since there is usually a lag, but that time was taken. Uncle Randy has his birthday that day and we have a small party planned, so it was probably good that the time wasnt available.
I will not be able to post updates during that time, but I will post just before we go in and perhaps I can talk someone on the "outside" into posting for me.
10/5/2005 3:23:36 PM
Dr. Mary Allare
Dr. Mary Allare has continued to be a source of hope for my wife and I. She has called our OB and we are going to plan for a Friday delivery. She was on the phone all day for me and my family and actually cares about my wife and child.
She shared this website with a coworker and her husband, Skip Richards. Skip has offered to take "semi pro" photos of Kennedy and the family after the birth. This is so kind and Carol is considering the offer as it should free me up from some of my duties.
Thank you for considering us and keeping us in your prayers. This is very important to us.
10/5/2005 11:11:18 AM
Kennedys Birth Plan
Kennedy has Trisome 18. This is usually fatal for the fetus before 1 year and "usually" much earlier. This is our plan for Kennedy's birth. Please try and understand that we have put a lot of thought into these concerns over the past 7 months and some of the items contained here might seem odd to you.
Kennedy is a blessing for Carol, Jason and her big sister Kristin as well as the rest of our family. It is important that you refer to her as Kennedy. Carol should be in contact with Kennedy at all times. Our wish is that if she dies, Carol or Jason is holding her. As a result, we ask that all possible procedures be performed in our presence or delayed. Our intent is to provide comfort care for Kennedy with minimal intervention.
Carol and Jason will have very few family members present at the birth. In the room we will only have Carols Mother, Wanda Head. Immediately after the birth and Carol having been covered with a sheet, Charles Head, Kristin and our Pastor, David Haught will be brought into the room. Your assistance with the process is important.
We desire no mechanical ventilation at any time, no CPR (no chest compressions) at any time. Rather, immediately after birth, perform standard suctioning, rubbing, and vigorous drying to aid in her respiratory and cardiac efforts. We desire that the following comfort care guidelines be observed.
1) Assess Kennedy’s respiratory effort after drying, warming, and suctioning.
a) If no respiratory effort, do not try to resuscitate. Give her to Mother or Father.
b) If she breaths reasonably well give her to Carol. Other procedures (footprints, eye ointment, vitamin K, etc.) are to be delayed until after the family is brought into the room and have spent some time with Kennedy and certainly after the baptism as taken place. Jason can be utilized to weight and measure Kennedy if necessary.
2) Comfort care (DNR) orders are instituted at this point (after the above has been attempted).
3) We desire that Mother or Father be holding her at all possible times.
4) We desire no warming tables instead use warm blankets to keep Kennedy with Carol as much as possible.
5) We desire that no procedures be performed without parents' presence. Jason is to be with Kennedy at all times.
6) We desire full rooming in (no NICU, transition nursery) for at least first several hours; later arrangements to be made with parents' permission only.
7) We desire that Jason bathe Kennedy himself or with Carol if possible.
8) Kennedy will most likely not be able to nurse regardless of her state. Most likely she will require a soy based formula.
10) If Kennedy stabilizes, we desire to take her home ASAP on comfort care.
In case of death:
If Kennedy dies during our stay, please notify staff members as soon as appropriate.
If she dies before being bathed, we desire to bathe and dress her ourselves.
After she dies, we desire that Kennedy be with us as long as we desire. Also, we desire that our children and relatives be allowed to be with us during that time.
Kennedy’s name, Kennedy Ann Elizabeth Huber, must be on the birth and death certificate.
10/5/2005 11:07:36 AM
Another Drs. Appt and the NICU doctor.
We had another Drs. Appt on Monday. Nothing really new to report from the appt. Carol is dilated a little more and progressing well. Heartbeat was normal and really that was it. The good news is they didn’t really say anything new to make Carol more upset.
I was referred to a Neonatal Consultant. Her name is Dr. Mary Allare. She works with the Phoenix Children’s hospital in the NICU. This is the doctor who will attend the birth as the baby’s doctor, not the delivering doctor – they don’t work on babies. Turns out Dr. Allare wont actually be at he delivery, but I am confident that her counterpart will be well informed by her and just as kind.
Dr. Allare was very helpful. We have had our share of not-so-helpful and sometimes hurtful doctors over the past 8 months. Carol wouldn’t come to this meeting for that reason. She was afraid of another doctor condemning our child. Dr. Allare wasn’t like this at all. She is very concerned and caring and compassionate. She answered all of my questions, looked over the birth plan and generally took 45 minutes to just talk with me about everything that will happen.
We talked about everything. Who can come in when, where Kennedy goes when and to who she we be given. She didn’t say I couldn’t do one thing I feel we need to do. She is experienced and gave me confidence that the doctors and the hospital wont add any strain to the process.
Thank you Dr. Allare. You are one of the few that have been kind over the past months.
We also talked about an early induction. We talked about how it really didn’t hurt to induce a little early. Not in the way that Dr. Strong talked about it (your baby is going to die anyway so who cares?), but in the way that baby is as grown as she is going to be, it will help us to be prepared and it really isn’t doing Kennedy much good to remain in the womb.
I am not sure why but I agree. I am not thinking of it in a way like “lets get this over with” but rather what is best for Carol, Myself, Kristin and our family. Kennedy has what she needs right now to survive as long as we can and planning for this is so very important. I am on the phone with Carol talking over the option now and Dr. Allare is checking on the details for us. We are going to talk in about an hour to figure it all out. This would probably happen after the 15th or so of this month and we may go into labor before the planned date anyway.
10/4/2005 3:45:02 PM
9/29/2005 12:00:00 AM
Found the hospital
Yesterday we drove down to the hospital to make sure we knew where to go. It is 12th St and McDowell go south first parking entrance on right then immediate left up to 3rd floor to park. Walk across into maternity triage.
If it is after 5PM you pull into the horsehsoe rather than go into the garage and they will wheelchair her in. Do you think we will get to plan anything about this birth? I doubt it. Kennedy - just hold on for another 5 weeks or so and you will be so much better off.
The concerns right now are just making it to birth - I think we will do this, and weight. We need Kennedy to gain weight. There is little we can do besides hope and eat. Well me eating doesnt really help. Carol needs to eat.
If "little K" makes it to 5 lbs I will be so happy and I am guessing that is a good weight for her birth and long term (days) survival. Her Uncle Randy was only 5 lbs 5 oz at birth.
9/19/2005 6:46:48 PM
9/18/2005 12:00:00 AM
Drs. Appt Yesterday
Carol went with Wanda to the doctors yesterday for a checkup. Baby is doing as well as we can tell and Carol is dialated just a little. This is great news and we are on our way to having Kennedy in our arms.
The doctor wasnt so kind when she talked about how to stop the production of milk and things like that, but they are just so clinical they dont seem to have a heart. We are going to do what we need to do for Kennedy when she comes out.
Most T18 infants have trouble latching on or breatfeeding at all that we will probably need to use a pump, but the point remains - Kennedy will need to eat something. We hope she will need to eat a lot, but we will hope for a little.
I am reading the Ender Wiggin Series of books and one of the main characters in "The Shadow of the Giant" is named Bean. He was small at birth and had a genetic trait that changed him for life and will ultimately cause an untimely death. He was so small at birth and now he has passed that trait onto his children which he is needing to collect.
The similarities are surprising but Bean lived and was very smart. Very smart and he looked mostly normal most of his life.
I keep thinking of when I golf with Kristin how Kennedy will most likely not have the opportunity to do the same thing. The I think how we will be able to bring Kennedy along and she will certainly gain some enjoyment out of seeing her sister playing a sport.
But unfortunately I realize that the chances of me holding her alive are so slim that her being 5 and watching her 9 year old sister golf just isnt possible. It just wont happen I am afraid.
The realization has started to hit me that Kennedy is coming that she is something special that I will need to deal with in my family's life. Just making it through the birth and praying for a cry is so hard to imagine. I cant allow myself to think that she will come out and look at me like Kristin did.
So it looks like the end of October is reasonable to expect the birth of our second child.
9/16/2005 3:16:30 PM
9/3/2005 12:00:00 AM
8/30/2005 12:00:00 AM
Chad and Erin Christman were blessed yesterday with the birth of Luke Christman. They were nice enough to send pictures as well as a video of Luke.
Congratulations to your family from ours.
8/25/2005 3:15:43 PM
We have the ultrasound video for you to watch.
It is about 13 Megs, so this should take an hour or so to download off a modem.
Kennedy Huber Ultrasound #2
Good news! We have also now been able to aquire the domain kennedyhuber.com
As soon as DNS is updated, we will be available from www.kennedyhuber.com.
8/21/2005 5:48:17 PM
Drs. Appt today
The appointment went well today. The UltraSound didnt show any other problems and Kennedy is now 1lb 14 oz. This is a little small, but still where we should expect. There looked to be less fluid around her body - which is also a good sign.
The doctor was much nicer this time. Actually telling us that she expects Carol to go to term and enter spontanious labor and give birth. She mentioned that we should expect a short lifespan, but other than that it was positive.
It is nice to have some good new on this subject. I could feel baby move last night and Carol could actually see my fingers move. I think Kennedy had the hickups. The next appt is September 12th. It wont be an ultrasound, but just a checkup.
I will post the video as a link when I get home. I have it in progress right now.
8/19/2005 8:07:41 PM
Dream last night
Last night I had another dream about Kennedy. I think since this is the second dream of this sort I should share them here. I do not pride myself on my writing prose, so please just read it and try and experience. I assure you it is as strange as it gets and it is completely true as I remember it.
Last night in the dream I was in an unknown location that felt familiar to me. It was my home, but did not look like the home I have now or have ever had. Carol had given me a backpack of sorts containing Kennedy alive and in the womb of the backpack (I know its odd). I was able to actually feel my daughter in the backpack. Her arms and legs and I was happy to be able to be so close to her. I realized that Kennedy was still in this womb of sorts and I was surprised, but no as much as you would think.
Within seconds, as dreams go, Kennedy was out an in my arms. She was an older baby and able to be held by the hands on my legs. I couldn’t see her face at all – again how dreams are to me, but I was able to remember her legs feet (sorry no details came through) and most of all – her hands.
Her hands were perfect. The scene quickly changed to her lying down and grasping at my fingers. I came to the realization that her hands were open and I was surprised by this much more than anything else in the dream. I remember her newborn hands with cracked skin as it is with newborns and finger nails a little too long. But open, not closed, not clenched. It was so fast I yelled for Carol to say “her hands are open!”.
Sadly, I woke up.
The other dream was stranger but reflects a real problem we are having. We have too much fluid around Kennedy. She isn’t digesting enough fluid; this causes it to build up around her. My dream was a reflection of this knowledge.
It wasn’t a long dream. I had baby in my arms still in the placenta (I know, but it’s the truth). There was a lot of fluid but I realized she wouldn’t make it like this for long. I found the hose I needed to attach (I don’t know what that means, but dreams are about feelings) and I found the fitting. I hooked them together and the placenta started to expand and seemed like it was going to burst. I felt that if the hose wasn’t attached Kennedy wouldn’t make it but if I unhooked the hose fluid came out. I hooked up the hose again and watched as the placenta expanded and then unhooked it again and fluid came out.
Thankfully I woke up.
8/17/2005 12:42:50 PM
Better day today
Today was a better day. The last two days were a little inactive, but today Kennedy was kicking as usual - or close.
Carol is in much better spirits about it, so that is a clear indicator to me that Kennedy really is kicking and making her feel at ease. We were honestly concerned that Kennedy was slowing down. I havent heard much about how the end actually comes. We hope it is at home in her parents arms.
If you have any idea how it actually happens in the womb and signs to watch for, please share. We checked the heartbeat and all was well, but activity was low. Lets hope it was just us worrying too much.
8/15/2005 6:52:31 PM
Not a good day yesterday
Yesterday wasnt such a good day.
Baby wasnt moving at all so we checked her heartbeat. It was normal as you can tell from the recording below this post. Still it was odd that Kennedy didnt move as much as she usually would have.
We were both rather worried and we can only hope she moves more today to show she is doing ok in there. We have a drs appointment later this week and I think they would make us wait until then anyway.
It will be a hard next few days as we wait to see what might be going on. Please pray for the best.
8/14/2005 10:43:20 AM
8/13/2005 12:00:00 AM
Drs. Appt. yesterday
The appointment went fine yesterday. We actually didnt meet with the doctor, instead we met with a nurse and a PA. They gave us a lot of information we should have had during the last visit and they checked the usual things.
Nothing was out of the ordinary and as we hvae known baby's heartbeat is doing good and she is kicking like mad. Calcium was suggested for Carol as was a diabetes test, which is completely standard.
We go back in 3 weeks for an Ultra Sound. Thanks for your support and prayers.
7/30/2005 12:00:25 PM
7/26/2005 12:00:00 AM
7/26/2005 12:00:00 AM
Things are going OK for Mommy and Baby. I think everything is ok in there, but I guess I really cant tell. Heartbeat is where it should be and activity levels seem to be irratic and normal. I think irratic movement is normal anyway.
We have upgraded our picture and video taking capabilities substancially over the past days so that we can be sure to get as many great images of Kennedy as possible. I feel that we are going to have a better time at this than we thought.
I am happy that we have made it this far and I keep thinking we are going to make it the whole way. I dont have any reason to not think so. We are nearing the 7 month mark and that is a big deal. Just a few more weeks and we will be in the safe range for birth.
I know that 8 months only means birth, but that is the goal right now. Honestly - a live birth is our goal at the moment. After that we will hope for an hour. Then a day, then a week and then a month. It is true but sad that I just cant imagine us getting a month with Kennedy after all we have learned, but what an amazing month it will be.
I am glad that most people who know me at work or at school have little or no idea what is going on with Kennedy. I am sorry, but it wouldnt make it easier and each new person that does know finds out and shares their knowledge with me in a private way - however small it is.
Kennedy's family is happy today and has been happy for most days after the diagnosis. Remember the smile on my face isnt a fake and I am not hiding any emotions. Carol is happy and sad at times as am I. The more we are happy the better off we all are. But we arent faking it.
7/24/2005 4:45:39 PM
I felt Kennedy move and kick!
Wow. I thought a few days back that I was able to feel Kennedy moving. I am still pretty sure I was. Last night, my wifes birthday, I know I felt her move. There is no question. I certainly felt a knee or foot or something move and kick against my wife's stomach. It wasn't such an amazing thing in that I could feel her move. My wife tells me all the time that she is moving. It was amazing that I could feel her.
Yesterday wasnt the greatest day for the Hubers or the Heads. But end of the day my daughter decided to remind me why I do what I do. I got to feel some reassurance that Kennedy is going to make it to term and to that kick I said: "She is going to make it." I have always hoped and prayed that she would make it, but now I believe. Call me fooled, but I believe that we are going to share some special times looking into each others eyes.
What an easy time we have of it right now. All we need do is hope and pray and keep looking towards the future. I want to be able to ride this wave as long as I can. I have the nagging feeling that my family is going to be drug across the coral when the wave crashes, but I think we are strong enough for it. Kennedy is worth it and we are all she has - I think we are going to handle it just fine and be stronger for it.
Things I have taken for granted (besides everything) until recently:
1. Birthdays - I just want her to have one (even if only the day she is born)
3. Eye Contact
4. A baby's cry
7. OK - Everything taken for granted.
7/18/2005 11:10:47 AM
7/8/2005 12:00:00 AM
Wow you guys are great. I was checking my stats at www.jasncab.com and noticed that Kennedy's RSS feed is my number 1 hit.
Man. Let me know who you are please. Just post a comment to this entry. I think comments are allowed in this one. If you dont want to post your whole name post something that will let me know who you are. Really if you are reading this especially via rss (cause my family dont do RSS) then really that is awesome.
7/6/2005 10:41:21 PM
7/3/2005 12:00:00 AM
Video of UltraSound
Here is a reduced video of the ultrasound. Everything went well at the appointment - details to follow. I was litterally taking notes during the US as well as the Dr. consult.
The video is definitely worth watching..
Kennedy Huber Ultra Sound
7/2/2005 9:25:06 PM
Doctors appointment tomorrow
Tomorrow we go in to the new doctor. We should get some additional photos as well as a lot more information. Carol doesnt want to be told the details of the situation as it just adds to the stress.
I will find out as much as I can from the doctor and post it here. It is important that I get information about Kennedy's size first of all and progress. It is important that Kennedy hasn't fallen any further behind in development. She is still kicking and we can certainly hear her heartbeat.
It is hard to admit I hope I go in there and we find some mistake with the earlier diagnosis. Her hands arent clenched, the amnio was wrong, or anything that is just a little better. But alas I am sure that the news will be more of the same. I really hope it isnt more bad news. I can live with what I have now, but take something else away and I will be hard pressed to deal with it.
Carol is another story. Right now she is having a hard time dealing with what we were dealt. It is a daily reminder to her. It isnt that I ignore it and she doesnt it is just that Kennedy is IN her. As I write this I can see her hand move to her tummy in response to a kick from our child.
Well stay tuned for more information tomorrow.
6/30/2005 8:53:01 PM
6/30/2005 12:00:00 AM
6/22/2005 12:00:00 AM
Drs. Appt. today
We went in o Dr. Saretsky today and he referred us the a parinate that delivers. We have that appt for next week.
Today there isnt any new news. We have a great chance of making it to term. We have a chance to hold her in our arms warm and alive. Dr. S offerred any help he could and advice and answers to questions in the future.
Really nothing new other than some encouragement and compassion.
6/17/2005 1:06:31 AM
New Dr. Appointments
We have an appointments. With the perinatal doc on the 19th in the morning. This is the doctor with the level II ultra sound. We should be able to see more about the baby and find out how she is progressing.
We are hoping that we dont hear that Kennedy is falling farther behind. Last time we were in there we were told she was 2 weeks behind in development.
We are hoping this time we are told she is still 2 weeks (or less) in development.
Then we meet with our delivery doctor on the 23rd just to talk over some more information and talk about how things might go. Each day goes by we get closer to our time. Her heart beet is up to over 150 BPM so I think that is a good sign.
6/14/2005 12:34:53 AM
6/13/2005 12:00:00 AM
Today we talked...
Today Carol and I talked about how it was to just continue on as if everything were normal. I have been golfing at lunch and she has been hoping that baby is fine. For the most part you wouldnt notice that anything were wrong with the family - and really nothing is.
We talked about how there is a chance that Kennedy will come up just normal. I said out-loud (it is important to note what is out-loud and what is not) that Kennedy could come out and have a few surgeries and then live a life in a wheelchair or with special needs that we can certainly provide. Carol added that we could certainly handle that and could only pray for something as precious.
We found Kristin a new bed which meant that there was no longer room in her room for the cradle she had insisted we set up for Kenndy (how she says it). It had to go into Mommys room. We can pray and dream and truthfully it almost makes me tear that our child will come home and get to spend some time in that special cradle made by her grandpa - Charles Head.
Earlier we had talked about this website and Carol had mentioned how she thought in the beginning, when we first found out that Kennedy was T18, that this website might not be a great idea. She said that she has since come around and likes the idea and actual appreciates the fact that we will have what few parents get. The chance to remember Kennedy as much as we can.
I know some of you that will read this will be thinking that it would have been better to end it or easier or whatever. Well Kennedy is kicking and mocing around. Yeah we hear the heartbeat, but she is alive in there. We have made our decision and we are happy with it. Here is the end result - baby - heartbeat, pulse, brain (which is developing normaly of course), hands, feet, she is a girl, eyes, a smile when she comes out, ok really a crying upset child when she comes out, a live HUBER.
Those of you that know me either have heard HUBERSTYLE or perhaps TEAM HUBER. Kristin is even protective of the status of TEAM HUBER. Pa has been inducted. Grandpa is soon to be. Mommy is out. Grandma is in for the moment I think. Grandma Jo-Jo is in by default (last name is Huber). I mean Being a HUBER is something we have taken to a new level. Kennedy is automatically part of TEAM HUBER right now. Mark my words she is part of the team. A child of a team member not only sweats HUBER STYLE but they are part of TEAM HUBER for life.
Kennedy is and will remain part of the family as much today as she will be 10 years from now. TEAM HUBER!!
6/10/2005 1:48:24 AM
6/9/2005 12:00:00 AM
So I uploaded 3 new sounds today. The first, or earliest is the least clear although you can hear her talking about 20 seconds into it? Hear it?
The second is rather clear and you can hear the trotting noise you should hear. Sounds like a horse at gallop.
The third or top most audio file is of mommy's heart. You can clearly tell that it beats only half as many times per minute as Kennedy's heart.
After all I was speacially trained to use the doppler thingy... It is the easiest device to use and I suggest it to anyone who has the patience and interest.
Carol is doing well and really needs to hear how everyone asks how she is doing. She is near the point where she will start talking to friends and family about Kennedy without to much trouble.
The most interesting thing is when people ask "is there any danger to Carol?". I am impressed by this question because it really does look past the immediate situation and look at Carol as a person that needs care.
The answer for those of you wondering but have yet to ask is: No. There is no more danger to Carol at this point than in a regular pregnancy. If that changes then our decisions might change. But at this point there is no reason that Carol should be in danger. In addition we should have some warning signs before it gets to that point. Without going into detail - Carol will know if attention is needed far in advance in most cases.
Thanks for your prayers and so far we still have a lot to look forward to!
6/6/2005 2:10:18 AM
6/6/2005 12:00:00 AM
6/6/2005 12:00:00 AM
6/6/2005 12:00:00 AM
Well sometimes no news is good news
I have updated the site to provide links more like http://www.kidbabble.com
So far nothing new with Kennedy. She is still growing and we are listening to the heart as often as we can. It does seem to be getting stronger, but as she moves around more it is harder to find.
Carol is doing well and we are both hanging in there.
6/5/2005 1:42:32 PM
6/4/2005 12:00:00 AM
6/3/2005 12:00:00 AM
Today has been better.
Today has been better. Nothing really new to report.
Carol was able to sleep the entire night and today she has taken it easy. Jason has conitnued his planning and I have found the following article which is the best that I have read (and I have read many so far):
We can only pray that Kennedy is as well off as this child in the following photo (explicit but not inappropriate):
Please don't look at any other photos of children with T18. Just don't bother. I will post plenty of photos of Kennedy when she is born and I will take descretion in doing so. Some of the photos I have seen on the web are not only disturbing but inappropriate for our situation.
6/2/2005 8:46:18 PM
"Not so much" is good news?
First everything seems to be ok.
Tonight Carol called me at DeVry to tell me that she was "spotting". This isn't good news.
There are some pains that came along with it and so we are a little concerned. Carol had spent the morning cleaning and getting ready for the bug guy. We used to use Glendale Exterminating, but the owner turns out to be rather rude and careless not to mention inconsiderate to her customers.
Anyway about 8PM Carol called and gave me the news. I was walking out so I hurried home. We listened to Kennedy's heart and all was ok. 140 BPM and seeming strong.
We don’t know the cause, but we are praying that it isn’t anything unusual.
Carol has since went to check several more times and "not so much" was the last response I received. So we think everything might be ok. We are waiting the night to see. Carol has had a few more hours sleep during the day. Tonight sleep will be plentiful.
6/2/2005 1:05:01 AM
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