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
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