Friday, November 6, 2009

Article about Chandler

I just found out that article about Memorials of Angels and Chandler was posted on November 1, 2009. Tom told me that some newspaper asked him to send a picture of us and asked him a couple of questions, but I did not expect it to be such a big and nice article. (The only thing which is not accurate is $17,000 expense, which was total hospital bill before the insurance). Please follow the link if you would like to read it:

Wednesday, October 7, 2009

3 weeks later

Today would be Chandler's due date - October 7, 2009. It is my father's birthday too.

I cannot believe that Chandler was born and left us 3 WEEKS AGO! I feel like it was just yesterday. I am looking at his pictures every day and I am so happy that I have them. It helps me to remember every moment we spent together.. I will never forget when doctor said that Chandler is here and everyone became so quite.. Two seconds later Chandler started crying, not for long but he did. They called Tom to meet him. Minute later Tom ran back to me to say that he is alive but very weak. He left again and come back with our beautiful Chandler in his hands and said, " I have somebody I want to introduce you to". I will never forget this moment. I was so happy that I started crying..

These 3 weeks were very hard for our family. With losing Chandler, my c-section recovery, we got another news - Tom's cousin passed away last Wednesday. He had a kidney and prostate transplant a day before Chandler's funeral. He was waiting for it for a year. Everything went great. His doctor was very happy with the results. Everyone was saying that he was like brand new person, talking, joking, giving hugs.. He got really sick on Monday, they took him for another surgery and he did not make it.. Tom is so heartbroken. His cousin Rick was 12 years older than Tom but they used to spend a lot of time together than they were kids.

So we had calling hours this Sunday and funeral this Monday. My Mom came too and I can tell how hard it was on her because of my brother (who died on October 22, 2007 due to car accident) and Chandler. So three mothers (Tom's Aunt, my Mom and I) who just lost their sons, we had a very nice and heartbreaking conversation about our losses and the only hope we have that one day we will meet our boys in Heaven and we all will be finally happy together.

All this time I was asking myself what God is testing me for by loosing Chandler. I think I found the answer.. I was so scared of death and even funerals, but not anymore. Now, I want to enjoy every moment I have on Earth with the people I love and will love, but one day, when it is the time, I am going to be happy to leave this world and join people I love in Heaven. I love you Chandler!

Saturday, September 26, 2009

I know that God is with Chandler

You know how you plan and plan something, and it still will not go as you planned.. This was not the case with Chandler. I know that God was all way with us, helping us every moment and every step..
Since July I was told that I can have Chandler any time, so I had my hospital bag packed and I brought a lot of towels and clothes to change in case my water brakes at work. But it did not happen, because God knew that it was not a time..
My husband Tom had a big day of new stadium opening at the University he works at on September 12, so we were nervous that Chandler will come around this day, and he did not..
On Friday, September 11, my Mom told us that she has to be with us during the delivery, so she left Russia on Saturday to be here on Monday. On Monday, first time during whole pregnancy, I had a bad pain on my left side, and I was thinking that Chandler is coming. I prayed God to give me few more hours so my Mom could be here (she was flying in at 9.40 pm), and he did! Pain went away and did not come back until next morning..
My Mom told me that she had never had such a wonderful trip, train, planes everything was on time, not to mention that she could buy tickets day before her departure and all of them were available and she had great sits. Plane came to Cleveland hour earlier and Tom was already there! She could fall a sleep at 11.00 pm and woke up at 8.0o am as she was living with us for a while (sometimes time change adjustment takes about a week or so). So by Wednesday, she was all rested and ready to meet her first Grandson!
We came to the hospital 2 hours before the c-section as we were told. Nurse told us that they are never on time because there is always some emergency c-section. But, you know what, they were on time!
Chandler was such and joy and Miracle! I told you how many things he accomplished and give us every opportunity to enjoy him!
Tom and I were nervous about the day of funeral (September 24). Tom planned everything, I was not participating in any arrangements, we did discuss it at home but I trusted him with everything! And you know what, we had the most beautiful service!
They were calling for rain this day. I was upset about it because we had a service in the cemetery. But rain did not come! We had cloudy and very warm and pleasant day! We had about 70 -80 people during the service: family, friends, co-workers. Our photographer sent us Chandler's pictures, so we had a chance to print one out so everyone could see how beautiful our son is! Tom opened the ceremony and he said the most wonderful speech Father can tell his Son. He had to stop few times because of tears and it made is even more sensitive and precious. He had a dream after Chandler died that he is at the end of the tunnel and his Mom (she passed away on April 22, 2008) was waiting for him and handsome man staying next to her. Tom did not know who this man was but his Mom told him that this is our Son Chandler. She told him that Chandler will take him further. Tom said that he woke up so happy because he knows that that one day we will meet our son again. He woke me up and told me this story..
After Tom finished his speech, our Pastor took guitar and played the most beautiful song Becca sent me - Precious Child. As soon as I heard this Son, I could not even imaging any other song for Chandler's funeral. Tom told Pastor about this song two nights before the funeral and he managed to learn it on his guitar!! He added few words to make it for Chandler and it was so wonderful that I could not stop crying!! He said that he will record it for me on CD, so I will post it as soon as I have it.
All together, Chandler's funeral was just beautiful. Yes, it was a sad day for us, as his parents, but it was beautiful at the same time.
One thing I forgot to mention is how many cards and flowers we got. I got cards from some people from work I hardly know. I work for multinational company, so my boss told me that people from many different countries called and ask him to forward they sympathies. I am so touched..
Thanks all of you for your support and prayers! I truly believe that all of you helped us during this difficult time and we really appreciate it.
I love you all!
P.S. This is another picture I adore of Chandler. I feel like he is looking right at my eyes and trying to tell me something!

Wednesday, September 23, 2009

Monday, September 21, 2009

Chandler's Picutres - Maternity Pictures

I do not have Chandler's pictures on the Earth yet, but I have few pictures I wanted to share when him and I were inseparable..

Chandler Thomas Kemp - Arrival & Departure

Our Dear Son Chandler Thomas was born on Wednesday, September 16, 2009 at 1.21 pm. He was 6 lb, 16 oz, 17 inch long. He has the most beautiful face and thick black curly hair. He gave us 39 minutes of his precious life and he had a lot to accomplish:
- He cried when he was born
- He was trying to talk with his Mommy and Daddy while they were holding him
- He was making funny faces when Mommy was touching his face
- He made funny face to his Aunt when she touched his chin
- He opened his eyes to see his Mommy and Daddy
- He opened his eyes to see the rest of the family
- He was holding Mom's finder in his beautiful arms
- He got baptized
- He melted every heart in the room and left the most beautiful memories and love everyone will keep forever.

It was only 39 minutes we could share but it was the most wonderful 39 minutes in my life.

I love you, Chandler! Thank you for being my Son. Your Mommy and Daddy will always remember you as their precious first son and they will love you forever!

Thursday, September 10, 2009

We have our c-section scheduled for September 16th

Today I had my 36 weeks appointment with the ultrasound. I cannot believe how good my Chandler is. He is already head down, as he should me, facing up. The only issue is that his head got so big that machine could not even measure it.. His limbs did not grow much, just by couple of days for 7 weeks since last ultrasound. But this heart bit is still strong and good 140. At some point technician scared me asking if I feel him moving lately.. As soon as she asked it, he started moving like crazy! My little boy was just sleeping!! Unfortunately we could not see his precious face today because of his position, but now I will get to see him in 6 days! Sounds so unreal! I was trying do not think about this day, because I can carry him forever under my heart , but I guess it is coming soon, which makes me sad.

So there were no discussion about vaginal delivery. Doctor said that nobody was able to deliver vaginally with the baby's head like this, and we cannot wait until 39 weeks because it will get only bigger plus because of my fluid, so we need to schedule c-section for next week. So September 16th is the day.. Please pray for us.. I cannot even think about it right now.. I am not ready to loose him..

Tuesday, September 1, 2009

Milk Bank

I had my 35 weeks dr appointment today. Gained another 7 pounds, not happy about that. My blood pressure was 104 to 70, happy about that. Even more happy about Chandler's heart rate 145. I finally have my ultrasound scheduled for next week!!!!!! They are also planning to take some fluid out, did not plan on that, but I am sure that they know what they are doing. So next weeks, I will see my little pumpkin again, I cannot wait! Doctor said that they will have detailed measurements done and make a decision if I will need a C-section, if so, the earliest can be done at 39 weeks, which is ok with me. Longer my little Chandler with me is better!

I just got a phone call form the breastfeeding specialist. She was asking me if I am considering donating my milk to the milk bank. I was thinking about it for a while but I still could not give her a definite answer. I feel a little bit selfish here, but here are my thoughts and here where I need your advice..

I understand that by doing that I will help some other kids in Chandler's memory. But.. I cannot even imaging pumping milk and do not have a baby?? Going to work, and trying to pump milk somewhere in the restroom when everyone knows about my loss?? Going to the funeral of my child and pumping milk afterwords?? the specialist told me that it is the way how they started it here , in Ohio. One lady who lost her baby wanted to support other children in her baby's memory. They said it actually helps other mothers to go thru the grieving process. They said I can stop at any moment. Maybe I will just do it while on my maternity leave?? I don't know yet.. I am really straggling.. I don't want to be selfish but I also do not want to destroy myself emotionally..

Tuesday, August 18, 2009

My 33 weeks doctor appointmnet

I have my doctor appointment today, I am 32 weeks 6 days as of today. It went ok, no ultrasound, which I am not too happy about. My belly measures 43 weeks !!!!!!!! How bigger can it get?? Chandler's heart bit is 150-155, which is good. My blood pressure is 100 to 60. So it looks like he is going to stay with me for awhile! :) unless my water brakes and than they said to be ready for a mess because of all fluid I got. i actually gained only 3 points for last 2 weeks, which I am very proud of. I guess drinking a lot of water and swimming really helps! I would recommend it everyone who has fluid excess like I do. (more trips to the restroom lol:) They said if I will have hard time of breathing , they can take some fluid out, but it will help for 2-3 days, so waht is the point..

My hospice counselor and genetic counselor were with me during my appointment today, so i am very grateful for that. Plus I met the Director of maternal medicine and asked her a lot of questions about the delivery and what I should do and where to call. She was very nice too.

I wish I could see my little Chandler swimming in my belly today, but I guess insurance company has its own rules .

Monday, August 10, 2009

Maternity Pictures

Just wanted to share nice experience I had with taken maternity pictures this Saturday. Tom was not sure if he likes this idea but for me it was an opportunity to take more pictures with Chandler, even while he is still in my belly. Unfortunately, we are not going to have too many pictures with him, so I thought this is going to be a family documentary of the part of life while he is still with us.

Our photographer Amy was so nice and thoughtful. I had no idea what to wear or what to do (now I wish I took more clothes for Tom and me to change). Amy made whole session going so smooth and pleasant that Tom and I were really impressed. I cannot wait to see pictures!

Thursday, August 6, 2009

Baby Breath Memorials..

I found this website with wonderful poems I wanted to share

Monday, August 3, 2009

People are so wonderful!

As we go thru the pregnancy, knowing that we will have to say good-bye to our son Chandler as soon as he is born, we are meeting so many wonderful people!

Let me start from the beginning.

We have a great Children's hospital in Akron. This is the place where I go for all my appointments as a High Risk Pregnancy patient. As soon as I transferred there, we got introduced to so many people offering their help and support. We have a wonderful genetic counselor, who helps us with all arrangements and meeting right people. We work with nurses and doctors who are specializing on cases when babies are not going to survive after the birth, we have a hospice care people helping us. Actually hospice nurse is going to join me during my future doctor's appointments. They helped us to find a funeral home. My husband went there and the owner told him that they do not charge any money for services for children (how nice and thoughtful).

We were looking at different memorial stones to be prepared, but our nurse recommended us to meet with Memorials of Angels group. They are located here in Akron and serve Summit county only , but I am sure you can find somebody like this in your locations. What they do is they make Memorials for Children under 18 year old free of charge. Can you believe that? They understand how difficult it is to loose a child and how many expenses parents have to cover before they even can think about making a memorial stone. These people are great! My husband and I joined a walk they organized this Saturday. I was so surprised to see so many people, kids, few pregnant ladies just like me. There were no open discussion but I am sure everyone had a story why they came here. There were no tears, no sad faces, people came to celebrate the memories about their loved once. It was a great experience, and we are planning to support this charity for many, many years as much as we can, because here are the people who really care.

Tom and I were debating about taking professional pictures at the hospital. Thank you again to our support group at the hospital for introducing us to Now I lay me down to Sleep. They are doing a beautiful job taking pictures before and after the birth again as a donation. These people are available 24/7 and ready to help parents. Please check their website:

I just wanted to share with everyone who needs that there are people who are willing and will help!

Sunday, July 12, 2009

Miracle happens when you do not expect it

Now we know that little Chandler has a thanatophoric dysplasia. We still have a little hope that it is incorrect but also trying to be realistic and be prepared for the delivery. I am 28 weeks right now and I hope that I have another 12 weeks to go because it means that Chandler has 12 more weeks of life. I having horrible constant pain under my rib on the right side. It started few weeks ago and it was kindo come and go and now it is there all the time. The only time I do not feel the pain is when I am laying on my right side. So it is hard to be at work all day but I am trying as hard as I can. for my Chandler.

Tom and I built new house 3 years ago.
We sold our old house much faster than we planned, so for 8 months we were living with his father. Between moving from house to house I lost some jewelry my parents gave me as my Wedding gift 6 years ago. I was mad and upset on myself for it and lost any hope to see it again.

On July 3rd, I went to my favorite BJ's store to buy some grocery and to pay for next year membership. Lady at the service desk was very nice, while she was trying to find out how I can use my company's membership discount, she asked about me prior address of living. I confirmed that it's correct. To my surprise, she told me that she bought my house. I looked at her and realized that yes, I remember her. We started talking about the house, about old neighbors, local news. Then she told me that just few days ago she found this little jewelry box with earrings and the ring but she did not have my phone number. I could not believe it! "Green and white stones?", I asked. She confirmed!!

What an honest person! I came to her house next day and she gave me my jewelry plus it had a golden nickles I did not realize I was missing! I gave her a little gift certificate but she did not want to take , luckily she finally did. I told her how much this jewelry means to me, because it came from my parent from Russia. This Lady, her name is Branda, made me so happy that day! It also was a sign for me that everything is under God's control, and only God knows what is the best for Little Chandler, so I have to trust him!

Wednesday, July 8, 2009

DNA Test Results

It took about 5-6 weeks for DNA test results to come back. During this time I had to have an ultrasound every 2 weeks. I had to switch from midwife to high risk pregnancy doctor. Our doctor was still very positive about the ultrasound, predicting achondroplasia, but genetic doctor still had a big concern. After about week 24 ultrasound, Chandler's limbs growth slowed down. During 2 weeks time period they grew up only by few days, so now we had a gap between body and limbs growth of 6-7 weeks, head was growing much faster, and was 4 weeks ahead. But doctor was still positive. I knew that something did not feel right, but Tom and I hoped that it is an achondroplasia, we are going to have a healthy little person. Baby's limbs are curved, but we knew that surgery can be done to fix it, so we were looking at his future very positively. My sister-in-law even decided to by a miniature horse so little Chandler could have a little horse.

I have looked at a lot of little people web sites, blogs, camp picture and I was already picturing us and little Chandler among these wonderful people. I have learned so much and I have opened my eyes on so many things I could never even think or guess about. How wonderful and special these people are. I will be honest, but I kindo was excited that our Chandler is going to be so special! Tom and I even took a wonderful trip to visit his family in Alabama. His sister went with us and three of us had a great time! Again I learned a lot from Tom's Aunt who owns a day care there about kids with special needs, that they can join regular day care and it made me even more excited.

But day when we had to find out our DNA test results finally came. Our genetic counselor and genetic doctor called me while I was at work. The first thing they said was if my husband is there. I knew exactly at this moment what results they are going to tell me.. It was a shock, end of the dreams, I could not stop crying. My boss was very nice and understanding, he even offered to take me home but I just wanted to be along, I called Tom, and he immediately left work to meet me at home.

I was trying to keep my emotions under control during my hour drive from work.. The only thing I wanted to do is to come home and close my eyes and be able to forget about it.. But how you can

Monday, July 6, 2009

19 weeks ultrasound..

My pregnancy went great, no morning sickness, no crazy cravings, every dr. appointment went as it was in the book, great 8 weeks ultrasound.

I did not even think about my 19 weeks ultrasound, I was just exited to see our baby again, how he/she is growing. My hubby and I decided do not find out if it is a boy or girl, because we did not really care, as it is our first child.

My husband was running a little bit late, so I was waiting for him so we could look at our baby together. We were laughing looking at our baby, my husband was saying that baby got his nose and baby was waving to him. Ultrasound technician was very nice, she finished everything and told us that she needs to see something else after she comes back. We were laughing that she just disappeared for 15 min or so. She came back with the doctor, he started talking with us about baby's development, that this is good, this is good too, but.. there is a possibility that baby is a dwarf because of the shortness of baby's limbs. So we have to have 2 level ultrasound done in Akron Children's hospital.

We left speechless, it was like a bad dream.. dwarf.. how this could happen?? we are normal size people, have no dwarfs in the family history. First thing we did, when we came home we started searching Internet.. What a discovery! I would never guess that it is possible. I cannot forget how one women said that when you are pregnant, you expect your baby to be born healthy.. and here we are .. It took for them 2 weeks before they could schedule our 2nd level ultrasound, they were the longest 2 weeks. That day we had to meet ultrasound doctor, genetic counselor, genetic doctor, case manager and ultrasound technician. It was clear that something was definitely wrong. Both doctors explained us what they see, and what they concerns are. At this point, baby's limbs measured at 15 weeks, had was normal size but abnormal shape, chest was in 5-10 percentile, small but still ok. So it was definitely a dwarf-baby. We were talk what at this point it is hard to say if this is an achondroplasia or Thanatophoric Displasia. One doctor was 99% sure that it is an achondroplasia, another one that it is a Thanatophoric Displasia. So we were offered to have a amniocentesis done, which we did.. Another month os waiting the testing results.

First good news we got is that all chromosomes are normal, we passed heart echo test with A+, not no DNA test results yet.. until a week ago