Imagine a love so strong that saying hello and goodbye at the same time was worth the sorrow.


December 31, 2010

2010 [[rewind time]]

2010 : The year we lost Kolton: The year we were also given Kolton. <3

2010, the year we grieved Kolton.

2010, the year I felt pain in ways I never could have imagined even in my worst nightmares. This is the year I stared absently out the window and imagined what would have been. The year of great tear floods that stained my pillowcase...No doubt, this will carry on in many years to come.

2010, the year I learned people are capable of understanding and compassion. And the year I learned people shut out pain when it becomes too much for them to handle.

2010, the year that I met some amazing people who understood completely what we were going through. It's sad to know so many people in such awful pain.

2010, the year I learned that you can be given something so very precious and for reasons unknown, it can be ripped out of your arms and leave a gaping hole where your heart once beat so strongly.

2010, I'm so very sad today to see you go. I'm not embracing the new year with excitement as I have in years past. Because 2010, the pain you brought, means Kolton was here. I mourn him so he lives.

[[Rewind time to where we still had Kolton with us]] [[Rewind time to where Kolton was safely tucked away inside]] [[Rewind time to Koltons conception, and let me take a TON of folic acid]] I'm sorry baby.
I miss you baby. I speak for the whole family. We miss you so much.

December 1, 2010

Gone much too soon


We went to Kolton's grave, as we do every day, and I read him a goodnight story: Puss in Boots. He should be in my arms cooing as I read to him. It hurts so much to see that "this" is our new reality. Our baby will never be in our arms again. We won't get to see his first steps or marvel at his new words. We can't plan for his future or watch him make his own future with a wife and children of his own. It's heart-breaking. I don't know any other way to describe it. It's soul-shattering.

I want to do more decorations and nice things for him. So far, he has a little monkey that plays twinkle twinkle little star and his little cheeks light up red, some white daisies (Mommy's favorite flower), a red rose, a white rose, and a yellow rose. Also, Kolton's grandma left him some red roses.
The wind is so horrible in Kansas, that we had to wire them to his marker.

I look back: to being pregnant, to the hopes and dreams, getting our fatal diagnosis, feeling his strong kicks, getting to meet our sweet angel, his funeral and burial. and to where we are now: visiting our sweet angel at the cemetery and looking down at our empty arms and aching for him. It all feels just like yesterday. I constantly relive my life from the moment we found out I was pregnant to this moment right here.

All of the joy and yet so much pain. I have memorized every part of him: every line, every hair, every detail, how he felt in my arms, how soft his skin is and I miss him so much. I can't begin to describe how empty I feel without him here with us. He should be in my arms right now. </3 My breast milk came in 2 days after Kolton left this earth. It felt like an arrow piercing what was left of my heart. This is made for my baby. </3
Daddy is our strength, though he is hurting too. Big Sissy is having a really hard time too. She feels guilty for having happy times. She cries in her sleep and misses him so much. She has wanted a baby sibling for so long (even asked for one for christmas every year for the past 3 years) and she was so very excited when she first found out that her wish was coming true. My heart breaks even more to see how hard this is for her. I feel like a failure as a mother in so many ways. The main reason being that a mother is supposed to protect her children and it seems that I can't do that for them. That I have failed both my daughter and my son. I know that I have no control over what happened, but it doesn't make it any easier.


I sleep with his little lamb, his baby blankey, his little winnie the pooh blankey, and his bear with his heartbeat recorded in it. I smile everytime Daddy rolls over onto that bear and Kolton's heartbeat starts going. All of this makes me feel so much closer to him. I don't want to think about where his body is right now. in the cold, all alone...I can't help but picture him crying out for mommy. I know this must sound ridiculous, but a baby needs his mommy. ='( Just as much as a mommy needs her baby. I try to understand but understanding never comes. I'm not sure if it ever will. I feel completely and utterly lost. We struggle everyday to accept this has happened to us and live in hope waiting for the day we wake up from this terrible nightmare, to find Kolton safely tucked in our arms.

We love you, Kolton <3 We miss you so much

November 25, 2010

Kolton Sage Sanchez's Arrival: 11/23/2010 10:20 am (CST) 5 lbs 8 oz and 17.5 inches long



Early Monday morning (1:00 am) on November 22nd, 2010-- I was standing in the bathroom and there was a popping feeling and a small gush of water. I rushed out and told my husband, Kelby, and he thought that we should go to the hospital but I didn't think it was my water that broke so we didn't go up to the hospital. Throughout the whole day, I was trickling water. Kelby said to call the hospital and explain to them and to see what they wanted us to do. At about 3:30, my mom called the Hays hospital because I had to go to an appt with my daughter. Hays hospital said to go to the emergency room here or to go to Hays because if my water broke then we had 24 hours to have our baby before an infection set in.

Once the appointment was over, Kelby and I went down to the hospital in town. The nurse was beyond amazing. She did a test strip (can't remember the name) and said, Yes, your water broke. The Dr. came in and checked my cervix and said I was 2cm and 50% effaced and said it did in fact break. He did another test and said that it didn't break. Then, he said he didn't know for sure if it broke or not and that we can go home or go to Hays just in case.

We decided to go to Hays. It was about 6pm or 7pm. We went home and packed our bag and Kelby's mom came to town and picked us up and we left to go to Hays. We figured that we would get sent back home, with everything that the Dr. here had said. We were put into an OB room and the nurse checked my cervix and said I was 3cm and 90% effaced and she did a test that is accurate to determine if my water broke and she said my water did break. She said that if I didn't go into active labor by 4am-5am that they were going to start me on Pitocin. She said I was having contractions but I had yet to feel them. We tried our best to get some sleep, but sleep never came. We were scared and nervous and just weren't quite ready!!

When we found out my water broke, Kolton's grandma Polly, Kolton's big sissy, Kolton's auntie Ray, Kolton's uncle Andy, Kolton's aunt Heather, Kolton's grandpa Dan, and Kolton's cousins Kyla, Taiya, and Arrionna, and Kolton's aunt Shelly and Kolton's cousin Sophia started heading down from Goodland. Our families sat with us and we all talked and then they waited in the waiting room. Our wonderful Now I Lay Me Down To Sleep photographer, came to our room and we talked and decided what we wanted to do, then she left and said to call her when things start happening.
It was 4:42 am when they started the Pitocin. I started feeling contractions shortly after that. They were so intense. They were getting very strong and 2 minutes apart. The nurse kept asking me if I wanted an epidural yet, I kept telling her no, not yet. I wanted to wait it out until I absolutely needed one. I remember hearing a baby down the hall crying and I told Kelby, I hope Kolton is born crying.

A new nurse came in at 7 and checked me and I was at 4cm and 100% effaced. The contractions were so strong and hurt so much. By 9:30, I was in so much pain that I asked for the epidural. Not long after that, I became dilated to 6 cm. About half an hour later, I was dilated to 8 cm. At 10:00, the nurse said it was baby time. I just couldn't believe it. Our little man was coming so soon. I still felt every contraction and that's what helped me push when I needed to. Throughout all of these contractions, Kolton's heartbeat remained strong. Our Dr. came in and told me to start pushing with the next contraction. To hold my breath to the count of 8 and push as hard as I could. A nurse was holding my left leg and Kelby was by my right side holding my leg and my hand. The Dr. told us when Kolton was in the birth canal and he was still moving his head around. This took about 5 different times. Towards the last few times, Kolton's heartbeat started dipping and slowing down drastically. I pushed with everything that I had to get him out as fast as possible. His heartbeat got slower and slower with every push. The Dr. kept telling me to breathe deep breaths so Kolton can get some air and that this is getting really hard on him and his heart is slowing down. Kolton was born at 10:20 am Central Time. His Daddy cut the umbilical cord. He wasn't breathing so the nurses tried to initiate his breathing. That didn't work because his heart had stopped right before he was born. The Dr. was talking but I couldn't hear him. I was staring so intently at Kolton and the nurses trying to get him to breathe. I was willing for him to breathe and the nurses put the breathing thing on him and kept staring at each other, saying no. The Dr told me, "hold him". I said yes. He was then put in my arms.

Our sweet, beautiful angel was here!  I held and kissed him and counted his perfect little toes and his little fingers. He was born with one eye open, as if he were taking in his surroundings. His eye was Dark blue. He was born with his mouth open. Daddy and I took in every detail of him. He has Daddy's hair and there was quite a bit of it! He has baby fuzz everywhere. If you look at him just right in the light, it looks like he has sideburns like his daddy. =) He was fuzzy on his back (which his daddy was trying to tell everyone that he got that from me. lol. which he didn't, by the way), his arms, his shoulders, just everywhere! He has his daddy's ears and his mommy's full lips. He has big precious little feet and long arms. He has little blonde curled eyelashes. He has a line in the middle of his big toe and the softest skin. He has such tiny tiny little fingernails with lines in the middle just like his daddy. His perfect little fingers and how they wrapped around my finger so perfectly. He has this beautiful heart shaped face. He weighed 5 lbs 8 ounces and 17.5 inches long! Kolton's big sissy came in right away and so did Kolton's grandparents. They each held him and gave him so much love that I am sure that he could feel it in Heaven.

Karen took pictures and my sister recorded a video and took some pictures as well. There were family and friends and our pastor that came to see Kolton. We were just surrounded by so much love. I couldn't begin to express how thankful I was to have these amazing people in our lives. We had such a wonderful staff of nurses as well. They went above and beyond to help us. Our nurse, Lisa, did his hand and feet molds, did his handprints and footprints, cut some of his hair for us, helped Daddy and I give him his first bath, she put his handprints on a christmas ornament, among many other things. The hospital gave us a satin bag with a baby book in it, a tile to get his footprints on, a little gold ring for him to wear, and a few other things. Karen and my sister captured all of these precious moments in time for us to cherish forever. These people are such a blessing. Thank you all so much.

Daddy and I gave him his first bath. We have a recording of part of it. His skin was so soft. We put baby lotion on him and just held him and loved on him some more. We couldn't get enough of him. We did hand and feet molds- we got big sissy and his hand holding her finger, my fingers with his hand holding one of them, and his foot.

We put him into a little kansas chiefs onesie. On the front it says "Born to be a Chiefs fan", on the back it says, "I poop on the Broncos". =) My sister took some more pictures of him.

We participated in the Duke Study (to try and find a cure for anencephaly) and that was the only time that he was ever taken out of the room until the funeral home came to pick him up.

Our families left to head home and we spent some time with Kolton, just admiring our sweet son. Our pastor came and said a prayer with us. He was going to take some pictures but the funeral home had to come pick Kolton up. I am hoping that we can get some more pictures though, I don't think that we could have enough.

The funeral home came to get him around 4 or 5 and that is when my heart broke into pieces. That was the hardest part. I asked that he stay wrapped in his little blanket and that his little lamb go with him. I didn't want him to be all alone and most of all I didn't want to abandon him to a complete stranger. They were wheeling him out of our room and the pain was so unbearable. I wanted to scream at them to stop them from taking our baby away from us.

We had to stay overnight in the hospital. We stayed in the same room, though we were given the option to move to a different floor so that we didn't hear the sounds of the other babies being born.

So raw with grief. We were discharged the next day a little after 8:00 am. We went to Walgreens to drop off my prescription of Percocet, though I didn't plan on ever taking any. I want to feel all of this. The physical pain could never match up to the mental and emotional pain that I am feeling.

We went and picked up Kolton at the funeral home. I was so happy to finally have our baby back. His mouth was closed and he looked so at peace. They had to cut him on his collarbone to do the embalming, I just want to kiss his boo-boo away. =(  They did such an amazing job. They even did it free of charge. Amazing people.

We went back to walgreens and I got my prescription and Daddy held Kolton. We thought he was heavy when he was born and now it seemed he was doubly so.

We headed back to Goodland. Daddy driving and Kolton in Mommy's arms. I will cherish these moments forever. When we got to town, we went to my mom's house and Kolton's aunts got to hold him for the first time, and his papa, and his great grandma, and his cousin, and of course everyone else held him again. =)

We had to take him to the funeral home before the funeral home directors left for lunch. We took him down there at about 11:40 on the 24th. I held him while we talked and made final arrangements. I gave him a kiss on his cheek and told him I loved him. Daddy held him. I asked that he stay wrapped in his blankey and that his little lamb stay with him. Daddy asked where they were going to be keeping him and she said in the coldest room in his little casket. Oh, how I wish he could come home with us. ='(. She took him from us and I just broke again...You can feel your heart when it's breaking.

We went home and spent time together as a family. Last night, was our first night back and it was so hard to be there without our precious baby. His big sissy slept with his bear. Daddy and I slept with his blankey that he is going to be buried with. I also held tight to the little bear that I recorded his heartbeat and his kicks on and finally cried myself to sleep. I miss our baby so much and although we knew that we would lose him, there is nothing that could have prepared us for this. The pain and heartache is unbearable and where do you find peace? I feel so guilty that if I had pushed harder that maybe he would have been born alive.

Today, my amazing sister brought over some pictures that she took and ones that Karen took. She brought the videos that were taken as well. These ladies are so gifted at what they do. I am going to be watching those soon. I miss Kolton so much. The funeral home said that we can go in on Friday and hold him and rock him, I am looking forward to holding our little baby again. I wish I could hold him forever. I would never let him go.

I will be adding more pictures to share of our sweet angel who has blessed our lives in so many ways.
I may have missed things too, and if I did I will update with them.

Some people only dream of angels. We got to hold one in our arms.

November 14, 2010

Kolton's Birth Plan


 
Birth Plan for:
Kolton Sage Sanchez

Son of Kelby and Lacy Sanchez. Little Brother to Alexia.


On June 23rd, 2010, 18 weeks into our pregnancy we were devastated to learn that our son, Kolton Sage, had anencephaly. We realize that Kolton will look different physically and will have facial anomalies. We hope that everyone can see him for who he is, our beautiful little baby. We may only have seconds or minutes with him, but we may also be blessed with hours or days. As Kolton's parents, it is our greatest wish to be able to cherish every moment we have with our baby, in a loving and caring environment. We have compiled this list of requests and wishes regarding his birth and care in order to make this experience as easy as possible for all involved. Please do not hesitate to ask us for clarification, if it is needed. Please don’t mind if we change our wishes at any time. Our wishes all revolve around our need to spend as much precious time with Kolton as possible and to prevent him from suffering during that time. Our wishes are as follows:

We ask that our son be referred to as Kolton.

We wish to have a sign placed on our door that designates what type of situation Kolton's birth is. We prefer not to have extraneous staff entering our room without speaking to our nurse first (i.e. housekeeping, dietary).

If possible, we request nurses specifically trained in bereavement.

We are participating in a research study conducted by Duke for neural tube defects, which includes anencephaly. For this study, blood must be collected from both Kelby and Lacy Sanchez. Also, tissue must be obtained from Kolton after Kolton has passed. Supplies have been provided by Duke and can be obtained from Kelby or Lacy. Directions for obtaining the tissue and blood samples will be provided along with directions for packaging and sending all samples. If any questions arise you may contact Heidi Cope, MS- Certified Genetic Counselor at Duke University Medical Center Center for Human Genetics:: 1-877-825-1694.

We ask not to be judged and that each member of the medical profession provide us with excellent medical care and the compassion to allow us, as much as you are capable, privacy to celebrate Kolton's life with close family and friends. It is our belief that precious time with Kolton is the only thing that will soothe the pain of those that love him.

We are planning on a vaginal delivery unless a c-section is necessary. We prefer to have continuous fetal monitoring during labor and delivery. Also the monitoring of heart tones Any drugs used should have minimal side effects and present the least risk to Lacy and Kolton while still providing pain relief; given it in the smallest dose that will be effective; Lacy wants to, and needs to be, alert during and after delivery. Lacy would like to have an epidural. Please respect our right to make all decisions regarding the birth should anything unforeseen occur.

We have arranged for a photographer, Karen Bonar, to be present after delivery. She is affiliated with Now I Lay Me Down to Sleep, a bereavement organization and will be taking pictures of us and our baby. Her number is (316) 371-7846. Rachel Ford will also be taking pictures and video immediately after Kolton is born. Please accommodate these ladies as much as you can. Any pictures and video they obtain will be very important to us to look back on.

Kelby will stay in the room with Lacy at all times.



Assuming they do not rupture on their own, please do not rupture the amniotic membranes artificially. The membranes and fluid will help protect Kolton's head during labor and delivery. We feel this will increase Kolton's chances of being born alive.

Cutting of the umbilical cord is to be done by Kelby, if he wants to cut it.

We have a special blanket that we would like Kolton wrapped in as soon as he is born.

As long as it is safe for Lacy, we want her to be able to hold Kolton immediately following delivery. If Lacy is unable to hold Kolton, we would like Kolton to be handed to Kelby. We wish to cherish all the time we have with him. Every second counts.

We want Kolton’s airway to be suctioned as soon as he is born to help him breathe. We would like to hold Kolton as soon as possible. We want to be told right away if he is breathing or if he has a pulse. If he is not breathing, we would like efforts made to help initiate his breathing. We would also like him given supplemental oxygen if needed. If he is doing poorly, we ask that he be given to us to hold. If he is to die right away, we want it to be in a parent’s arms.

We would like mechanical assistance to be used only temporarily to initiate Kolton's breathing. We do not want any extraordinary measures taken to maintain breathing or to initiate his heartbeat. We request that blow-by oxygen be available if we want to use it.

Since it is possible that Kolton is going to be with us for only a short amount of time we want every second possible with him in our arms, beginning from the moment of his birth. Please delay (or even prevent if possible) any procedures that can be put off until later. If any procedures must be done we ask that they be done while Kolton is in our arms.

We anticipate that Kolton will be born with a large opening to his occipital area and neural tissue will be exposed. If he is in stable condition, we would like a dressing placed to any open area AFTER we have been allowed to see it.

We would like Kolton to be kept warm.

We may want routine admission medications given, such as erythromycin ointment, or Vitamin K, and we may want his blood sugar monitored, if requested.

We ask that you give us privacy, without abandoning us. Encourage us to do whatever feels right.

We do not want Kolton to be taken from the delivery room at any time, by any person, for any reason. For however long we may have with him, we want him in the room with us.

If Kolton lives long enough we would like to feed him. We would like to breast feed him. If he lives long enough to require nutrition, if he doesn't take to the breast then we want to bottle feed him, however, if he is unable to be bottle fed we do want a feeding tube inserted.

In the event that Kolton does not die immediately, or soon after birth, we may consider having an IV inserted for the administration of pain medication. We wish to make Kolton's time on earth as pain-free and comfortable as possible.

In the event that Kolton is experiencing severe seizures and seems uncomfortable or in pain, we may consider the administration of anti-seizure medication.

We want the nursing staff to weigh and measure Kolton when we request it. Should we forget to request it, please do it prior to him leaving the hospital.

We would like the opportunity to give Kolton his first bath.

If Kolton looks like he won’t survive during our time in the hospital we want him to be with us and we want to be holding him in our arms when he leaves us. When he has passed please notify staff members who will come in contact with us. Please do not take him away from us after he passes.We will let you know when we are ready for you to do any routine procedure on him. If we are blessed with the opportunity to take Kolton home with us please give us advice on how to feed him and care for his head (with dressings etc.).

Please do not allow anyone in our room without talking to us first. We want our daughter, Alexia who is 10 years old, in the room immediately after delivery. We would like to have the option to bring our family to in the room to meet Kolton and spend time with him. We ask your assistance in keeping them updated as we request it. We might need your help with getting visitors in when we are ready. Polly Potterf- Lonnie Potterf and Marlene Penton- Danny Penton are to be the first visitors. They are his grandparents. Followed by immediate relatives. Kolton has family that is very eager to meet him. If possible, we want them to be able to spend time with Kolton while he is still alive. Time is of the essence for us and we do not want any avoidable regrets or missed opportunities.

We do not want Kolton to go to the morgue at any time. We will call Bateman Funeral Home directly when we are ready to say goodbye to Kolton. We will be taking him to the funeral home ourselves. We have made prior arrangements for this. Bateman Funeral Home can be contacted at: (785) 890-6600.

If any caregiver has a suggestion or an idea that you think may be helpful, please share it with us, as there are many things we might not have thought of.

We would like to have as many keepsakes and mementos as possible. Please save the following items for us to take home:
the bassinet card
hats
baby blanket
any photographs taken by the hospital
hospital ID bracelet and cord clamp
hand and footprints (we also wish to have footprints put in frames that we have brought with us)
mold of hands and feet (we have kits with us)
lock of hair if possible
clothing Kolton may have worn
heart rate/contraction strips from any monitoring
and any other things you think we may wish to have


This is a very difficult time for all of us. We truly appreciate your help and support, and ask that you understand the varied range of emotions we may experience. We also appreciate and find comfort in your expressions of grief, so please do not hesitate to show your emotions in front of us. We have tried our best to prepare for our short time with our little Kolton. Saying "Hello" and "Goodbye" in such a short period of time will not be easy. With your help and support we hope to make this time as meaningful as possible.
 
Thank you,
Kelby and Lacy Sanchez
 
 

Thinking of you, Kolton

I haven't updated in awhile.
I lost my mucus plug last Sunday, Nov. 7th. I've been bouncing back and forth between being 1cm dilated to being 2 cms dilated. We had a Dr. appt on November 10th and my cervix was 50% effaced at that point. But that still gives us no idea when our little man will be here. =) I am not rushing it. He can stay safe inside as long as possible.

Our first appointment with our new Doctor was as amazing because he was the only Doctor that we could find who wanted to give our baby every chance possible. It makes me sad that now, it's more about my health and me because "there's no hope for our baby. So, no point to do any unnecessary things to my body, etc." I asked how he would know if the baby was in the right position to be born. He said, Even if the baby is breech, he will not give me an emergency C-section because of the risk it poses to me. It will pose risks to the baby because of the breech position but he seems to think that there's no point if there is nothing that can be done for our baby. That breaks my heart. He apologizes every time for being crass---
He also said that if I don't go into labor by our due date that he won't let me go past 42 weeks, which is December 6th. I really wish he understood our situation. I really wish that he knew that we are unemployed, that we have to borrow a vehicle every week just to make it out of town, that it costs $50 in gas every week just to see him for 10 minutes so he can remind us that there's nothing that can be done for our baby,  that it's going to be interesting when I go into labor and driving 2 hours to get to Hays because he refuses to induce us at any point unless I am 42 weeks along, and that this is OUR baby and we want him to be born ALIVE, dammit. We KNOW our baby's condition is fatal, don't think we are naive. We want him to be born alive among other things. But being born alive is a [[HUGE]] very important thing to us.

We also met with a pediatrician. She was amazing. She talked to us about options and told us we needed to finetune a birthplan. We need to actually finally talk about this and see what we would like to do when Kolton is born. We have kind of put it off because it is a hard thing to deal with but we are only 8 days away from our due date so we better get in gear.

=(

October 21, 2010

Too perfect for earth

Tuesday, October 19th, was mine and my husbands 1 year wedding anniversary. We've been together for 4 years and married for 1 of those. This has been such a challenging year for us. We lost our jobs in April, we received the diagnosis that our beautiful baby has anencephaly in June, we lost our house in August, we lost our dog in September and our other dog was attacked by two dogs and barely survived, also in September.
I love my husband so much. He is my rock of strength.Our marriage has become much stronger and we have become much closer.
I realize now more than ever how fragile life is and how fast it can be taken away. I try to make sure my family knows that I love and care for them so much. I probably hold on too tightly because I am so afraid to lose them too.
I remember getting the phone call from the nurse about my triple screening blood test. She said I had elevated levels for trisomy 18. My mom and sister came over right away and I was calling my husband, he was out of town on that day. I started looking up trisomy 18 and what I read was horrific. I read that babies affected by this, usually don't make it past their first birthday. My mom took my phone and told me to stop looking it up. I also saw anencephaly, but I just glanced over it. Then later finding out that our baby has anencephaly, which gives our baby a survival rate of minutes, hours, a few days, if we are lucky---just became so much worse than what I had originally thought. They are both fatal and just as horrible but trisomy 18 would have given us more time with our son.
Wednesday, October 20th, we went to our Dr in Hays. He checked my cervix to see if it was dilated. Ouchies!!! It isn't dilated, which is great news. I asked a lot of questions about what happens when Kolton is born, what measures will be taken, and what options we have. He told us that he will do whatever we want to do but the end result will be the same. He said babies with anencephaly die from infection because of the open wound in the head.
First option: He said he can dress the wound and give antibiotics to fight the infection. They would give him a feeding tube so that he doesn't starve. It's just prolonging the inevitable but it would give us more time. He said it could give us weeks and months with him. Of course, I want to do everything that I can for my son. I want to know as a mother that I did everything I could, within my power.
Second option: Is providing Kolton with comfort and care and not taking extra measures to prolong his life. The Dr said that he would personally choose the second option because he would want to be able to bring his baby home.
I have read conflicting things: that a baby with anencephaly usually goes into cardiorespiratory arrest and that is how the baby dies, or the brain stem fails to support vital organs and the baby "forgets" to breathe and that is how the baby dies, or that an infection sets in very rapidly from the open wound. I just don't know what to think. =( I want as much time with my son as I can have, who wouldn't want that. I want to do anything that I can for him. Where is the invisible line that seperates being selfish and doing what one should? Where do we stand as parents when we are having an angel for God? What choices do we really have?
I know where my heart stands-and that is to fight for my son. We will give him to God either way but I need to know that I gave everything I could for him.

[Update:] I bought 2 bears from bear regards and recorded Kolton's heartbeat. One for Lex and one for Kelby and I. On one of them, it was shorter than the other, but Kolton kicked during it. =) So precious.
My sister gave me this idea, so I want to buy Kolton a Kansas City Chiefs jersey because his Daddy is a huge Kansas City Chiefs fan. I think that would be really special. =)
I made Kolton's Cd.
1. Elizabeth Mitchell- You are my sunshine
2. Rocket Club- One more day (In Faith)
3. Selah- I will carry you
4. Dixie Chicks- Lullaby
5. Diamond Rio- One more day
6. Mercy Me- Homesick
7. Natalie Grant- Held
8. Kenny Chesney- Who you'd be today
9. Alabama- Angels among us
10. Marc Cohn- Butterfly Kisses
11. Steve Curtis Chapman- Heaven is the face
12. Patty Loveless- How can I help you
Making this CD opened the floodgates for me.
((I actually changed a couple of songs on this Cd).
Thank you Lindsey, for sending me that Selah CD so I could put "I will Carry you" on it. Thank you for raising money for Kolton. You are a god-send and the best friend a girl could have. =)

We received a beautiful hat and a card in the mail from a wonderful family, the Lundell's. They just had a baby Angel, Jack. I want to thank them for sharing Jack with us. He's such a beautiful little Angel. Thank you so much!

I have been suffering from a miserable cold, for the last couple days. I called the hospital to see what medicine I could take, they told me tylenol cold, robitussin dm, benadryl, or vicks cough syrup. They said do not take multi-symptom forms. So, my husband and I went to walmart and there is a sign taped to the shelf where the cold medicine is, it said that they are out of certain medicines due to manufacturing difficulties...imagine that every medicine I could take was on that list and they didn't have any..we bought some cough drops and left. We got home and searched the house top to bottom for my benadryl medicine and couldnt find it. My sweet husband, who was in his jammies and ready for bed, went to Presto convenience store, and bought 3 boxes of 2 pills each for $2.09 a box. (Did I mention how amazing my husband is.) The next day, he went to Kabredlos after he took Lex to school and bought them out of the Tylenol Cold Head Congestion medicine, which cost him over $16.00. They are boxes with 4 pills in each box and $2.09 a box. (absolutely ridiculous!)
So, I took those every 4 hours yesterday. Then I look it up online to see why pregnant women can't take multi-symptom cold medicine, apparently there is a medicine in them- Phenylephrine- that cuts off oxygen to the baby. That happens to be in the Tylenol Cold medicine that I was taking! That really really scared me. He was kicking all night, so I know that he is okay. It's just scary to take anything, even things that Dr's say are okay to take.

I am sure that I have forgotten to write some things down, I have pregnancy brain and forget everything, lol.

October 6, 2010

You are my sunshine

We went to see our Dr in Hays today. We are 33 weeks + 2. =)
I was hoping for an ultrasound to see our little guy, but not this time. The last ultrasound we had was so amazing. We saw his mouth and his nose. His little tongue was moving. We saw his little hands and feet. :) So precious. He kept putting his hands in front of his face. Apparently, he doesn't like having his picture taken. lol.

Today, the Dr came in and we went over routine questions. He momentarily forgot that our baby has anencephaly and asked if I planned to breastfeed or bottlefeed. I just stared at him and wasn't sure what to say. It took all the willpower that I could muster to keep myself from breaking down in tears. I would love nothing more than to breastfeed and for this all just to be a bad dream. I would love to be decorating his nursery and buying little boy outfits and onesies. I would love to watch him grow and see if his personality is like his daddy's or like mine and if he acts like his big sissy did when she was a baby. I yearn to hear his first words, see the accomplishment in his eyes when he starts to crawl, and guide him through his first steps. I want those sleepless nights spent up with my crying baby. I want to change those dirty diapers. I want to be thrown up on---All of this means that I would be keeping my baby. What I wouldn't give for that. I always used to pray for a miracle and for God to heal our baby (I still want that). Kolton is our miracle though and God's form of healing may be taking Kolton home with him. I wish for things like him being born alive and him being alive for a long time, to meet his family who so eagerly await his arrival--as long as God will allow.

I wish I could understand why this is happening. I am always questioning. Why Us?? What did we do so horribly wrong that you have to take our baby away from us? Then I get to thinking about how God gave up his son and I know that he understands. I just wish that I could without any doubt in my mind.

I got a flu shot today and finally bought some maternity clothes. I know you are probably wondering why I would wait 8 1/2 months to buy some. =) Well, I am seriously running out of clothes that fit. I didn't buy maternity pants so my husband will just have to deal with me running around in my jammy pants. lol. It would probably be alright to him if they weren't mostly bright pink and bright green. =) I can be very colorful and I am not sure he appreciates it as much as I do. lol.

<3 Baby Kolton <3 your Mommy, Daddy. and your Big Sissy love you.

October 1, 2010

How long do you wanna be loved? Is forever enough because I'm never never giving you up

It has been a really rough week. I know that the time is drawing closer and it's just breaking my heart. I am not ready to let go of my baby boy. I can't pick my daughter up from school without bawling my eyes out. I read a Hallmark card a couple of days ago and afterwards, I just laid in bed in my husband's arms and cried. I've been such an emotional wreck.

My dear husband called our local Dr and asked if there was safe medication that I could take to help. They prescribed Zoloft, which has been proven to cause septal heart problems in the infant when taken during the second half of pregnancy. I'm not taking that...are they crazy?  Regardless of what they think of our baby's prognosis, they need to treat this pregnancy like any other pregnancy. If they wouldn't prescribe that to a pregnant woman whose baby has no known problems, then why would they prescribe that to me??? Just because our baby has a fatal anomaly does not make it justifiable. He is still our beautiful baby.

I am compiling a musical selection to be played at Kolton's funeral. It's very challenging not to break down. I wish I could find the song that I wanted the most. I will carry you- Selah.

September 27, 2010

32 weeks


 
32 Weeks!! 


I am 32 weeks pregnant today. 8 months!! I cannot believe it. The time has just flown by--right out of our hands! It scares me because I am not ready to lose my little guy. :( I feel so helpless as a parent because parents are supposed to protect their children. There is nothing that I can do to save my little boy.


Today, we went and bought the rest of the burial plots. So that when our time is up, we can all be together as a family. Then we went down to the funeral home and paid them some money for Kolton's funeral. What an upsetting way to start the day. The funeral director recommended that we do grief counseling now before little Kolton gets here but I don't think that I can do that while I am still pregnant. I want to enjoy every moment and keep the sadness at bay. I don't need to be bogged down with grief, though I know it is already there; I just refuse to acknowledge it right now. There is a time and a place. Now is not that time.

There is so much that we need to do and I can feel the time just slipping away! We need to buy Kolton a new tux, since he has already outgrown the original one we purchased. =).We also need to order new necklaces that do not have a set date on them. We need to make a cd for him. We need to meet with a minister and decide how we want his funeral to be. How horrible is it to plan a funeral when we eagerly await his arrival...We wish that he were allowed to stay with us longer but that choice was not ours to make. I pray that we get time with him, that he is born alive and is able to meet his family that loves him so very much.



"There's an elephant in the room.
It is large and squatting, so it is hard to get around it.
Yet we squeeze by with, "How are you?" and "I'm fine," and a thousand other
forms of trivial chatter. We talk about the weather. We talk about work.
We talk about everything else, except the elephant in the room.

There's an elephant in the room.
We all know it's there. We are thinking about the elephant as we talk together.
It is constantly on our minds. For, you see, it is a very large elephant.
It has hurt us all.

But we don't talk about the elephant in the room.
Oh, please say his name.
Oh, please say his name again.
Oh, please, let's talk about the elephant in the room.

For if we talk about his death, perhaps we can talk about his life.
Can I say his name to you and not have you look away?
For if I cannot, then you are leaving me....
alone....
in a room....with an elephant."




I have met many people along this journey. Many people who are on the same journey and those who help people during this very difficult time. These people have become my family and I am so grateful to have met them, though I wish the circumstances were different. I have learned to take it a day at a time. Cherish the little time that you do have because it can be ripped away from you in an instant. Do not take anything or anyone for granted because no one is promised tomorrow and all it takes is one second and your world can change forever. I love my family and friends more than words could ever say. I hope and pray that I don't let a moment pass for me to tell them how much they mean to me.

September 22, 2010

Due November 22, 2010

We found out I was pregnant when I was 9 weeks along. We were both very pleasantly surprised. I was beginning to think that I couldn't have any more children. (I have a daughter, Alexia,  who just turned 10 this month!). I felt so very blessed once again. We immediately picked baby names. I wrote down the ones that I love and gave him the list and told him to write down the ones that he liked. Instead, he took my list and picked out the ones he liked from it. He said Kolton for a boy and Addison for a girl and the middle name will be Sage. =) Perfect.

We did our triple screening testing when I was 16 weeks along. Two weeks later we got the results back. I tested positive for Trisomy 18, with a ratio of 1/62. My heart dropped. We immediately scheduled a specialized ultrasound and possible amnio in Denver for a few days later. We were told by several people not to worry because a lot of people get false positives. We were very hopeful that this was also the case for us.

On June 23, 2010, our lives drastically changed. Nothing could have prepared me for this day. The ultrasound tech looked over our baby and spent a long time trying to find his head. She said, "I can't find your baby's head. I don't think your baby has a head". She left the room to get Dr S. Our daughter said, "the baby doesn't have a head?" I couldn't believe what I was hearing. Tears were just rolling down my cheeks. I remembered how so many people asked me if I wanted a boy or a girl and I would reply, "as long as the baby is healthy, it doesn't matter what the gender is." It seems that dream came crashing down on top of me.
The Dr came back in and took a look himself. He said, "Your baby is incompatible with life. The baby has anencephaly, which means the top part of the head above the eyebrows never developed. The baby won't live long after childbirth if he survives the childbirth process. I recommend that you terminate and we can do that right now. Would you like some time to talk about it?". He lead us to another room, where we were just too shocked to speak. We were so lost.
He checked on us several times within the next half hour. I asked him, "can you tell us if we are having a boy or a girl?". He said, "It looks like it's a boy". He explained to us how he can still grow and have a heartbeat without having a brain. It's because of the brainstem that is located at the top of the spine.
How could we be put in this situation to make a choice and have our baby die now, or carry him and have him die later. I don't want him to die at all. I wish he could stay inside of me where it is safe. When I think of making choices for him, I think of what outfit he will wear when he comes home from the hospital. Not die now or die later. :(:(
[[This whole time my husband was right. He was so determined that we were having a boy. I kept having dreams of a baby girl so I was sure we were having a little girl. lol.]]
We talked and he called his mom. We wanted to carry our baby to term. This is our son!! We wanted to give our son a proper burial. We told the Dr of our wishes and he gave us his card and told us to keep in touch if we changed our minds.

We drove back home in a fog. How does one process the news that their baby is dying and their is nothing that they can do to save them?? We had to go in for a follow-up visit with our original Dr. (Dr D).
We told the Dr what Dr S. told us and that we wanted another opinion. We did another ultrasound at the hospital. I told the ultrasound tech what Denver had told us. She didn't know what it was so she typed on the screen Possible Fetal Demise. She said our baby doesn't have a face or a back to his head or a top to his head. But I knew he had a face because I could see it. Dr. D came in to go over everything with us. He said that he wouldn't be able to deliver our baby because he wouldn't be comfortable doing it. Regardless of when we chose to have him. He was in tears. We left and he later called us and told us that we should terminate because there are so many complications if I carry full term. The complications consisted of too much amniotic fluid, due to the baby not being able to swallow it and that would cause my kidneys to fail...etc. the list goes on and on. That really scared us so we thought of inducing early. I read that a healthy baby born at 26 weeks would have a 90% survival rate. I wanted to believe that the Dr's were wrong. When Dr. S called me, I told him that we would induce but it would be when I was 26 weeks along. He said why so long? I told him about what I had read and so we set it up for August 19, 2010.

We went to Bateman's funeral home to start making funeral plans. It was the hardest thing I have ever had to do but I wanted to do it now, because this is the only thing that we can plan for him and I want it to be perfect. We then picked out burial plots for our family. We ordered Kolton a white tux with blue lapels to wear in micro preemie size. We ordered memorial necklaces. One for each of us: Kelby, Alexia, Myself, and Kolton. We bought concrete molds to get hand molds and feet molds. We bought two baby blankets, whom a friend's mother embroidered his name on. I contacted a Now I Lay Me Down To Sleep photographer (http://www.nowilaymedowntosleep.org/) and arranged for pictures to be taken.

About a week later, a couple friends gave me the name and number of a good Dr. in Hays. Dr. F. I called and asked his nurse if he had ever delivered a baby with anencephaly before. She told me that she would find out and call me back. She called back right away and we set up an appointment to see him .

At our first visit with Dr. F, he came into the room and he said, "You have choices. I don't know what you have been told but you have choices." We told him everything and he said it was obvious that we wanted to give our baby every chance possible. He said, "I urge you to carry to term and I would love to be able to deliver your baby for you. I want you to have the chance to say--we have two children; a daughter and also a son that we didn't get to take home."

We have a better peace of mind now. We have a Dr that treated our baby like a baby should be treated. A perfect beautiful blessing. He told us that when we go into labor to just start driving that way. :-/. It's 2 hours away!! So I hope all goes well when November rolls around!!

At 27 weeks, I went into preterm labor but they were able to stop my contractions. I was put on bedrest and they stopped completely. Very thankful for that!!!

We are at 31 weeks right now and cherishing every kick and jab. He is a very active little guy. He showed his big sissy that when she was laying with her head on my tummy! He kept kicking her. lol. She had to move because she couldn't hear the movie.

You never know what strong is until being strong is the only option. This journey has been a roller coaster ride. At times I fall to pieces. When I talk to other anen families I fall apart. I try to stay positive and strong because I want Kolton to feel nothing but love. I don't want him to know of grief or sadness. I just want him to know how loved and precious he is to us.

We are so thankful for our family and friends. For without them, I am not sure how we would be able to get through this.