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

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.


  1. I have never heard of the infection part, I never even thought of that happening. Just assumed the membrane covering the brain would stop that. Crazy how even with a year of research I am still learning new things! We were actualy told by all of our doctors that they die from the cardiac arrest. I never even thought to research other causes.

  2. Mary, I didn't know that either! So, I don't really know what to think because I have mainly read about the cardiac arrest happening.

  3. Lacy, Dont worry now about what might be. When he is born you will know what is best for him, peace or fighting. I don't wish to ever have to make that choice myself, but I feel for you. Take care of yourself! Lots of love and prayers!

  4. Yellow, You're right. I will be able to know what he needs better once he is born. =) Thank you!! We need all the love and prayers that we can get

  5. Lacy - I tried to contact you before - wondering if you doctor in Hays, Kansas? Because if so - I also live in western Kansas and wanted to get in touch with you. I saw you started following my blog and it reminded me to send you a message again.