Wednesday, July 30, 2008

Being told, "it's hopeless"

Most of you will already know the information I am about to post, but I want to put it all together, so I can start a blog. This way people can follow our journey from the beginning if so desired. This post will be long since it is complied of all the information thus far that I have reported.

July 11, 2008
so, as some of you know, we had our Big Ultrasound today. Well, it wasn't good. The baby has too much fluid in the brain and not enough tissue. The cerebellum is also messed up. I think it is bigger than it should be or something. Also, something is wrong with the mouth, cleft palate and cleft lip, and the eye orbitual is messed up as well. The hands are clinched up too. All are not good things. We met with the doctor today and she had nothing good to tell us, really no hopes. It may be a trisomy 18, which means that the baby may not make it through utero. If the baby did survive, it may live a week (at most). The is just one option it may be. It could be something else with a chromosome or with a syndrome. None of which would be good, looking at the finding thus far. Regardless, (if baby even survived utero), the baby would be severely mentally impaired-not being able to eat and breath on its own. We meet with the specialist on Monday. He will do an amnio and we will find out more information within the weeks to follow. She even give us the option of aborting...b/c of such little hope. As I write this...I don't know how to feel. I find it interesting that in bible study we discussed God's sovernity(I know spelling is wrong). I believe God is who he says he is. I am just glad that we discussed that last night. I know this is not going to be easy, but I have to be confident in knowing that God is good and that this is in his plans. I need to be reminded of these things, b/c I know they will be harder in the weeks to come. Please pray for us. Pray for Jeff especially-he internalizes things. Wow, this is hard stuff. I don't understand, but it's ok. I just have to trust God is good. God is good. He knows the plans for us. This is to glorify him!!!!

July 14, 2008
Hey all, Thank you all so much for praying for us and encouraging us. Please continue to do so, as we battle during this time. Today we went to see the specialist. Again, no good news. I directly asked if there was any hope and he said no. When the specialist did an ultrasound, he was able to tell us more of what was actually going on. The biggest issueis the brain. Basically, there is not much brain actually there. There are chunks missing. Also, there is piece somewhere near the cerebellum that is missing as well. If the baby survived utero, the baby would not even be capable of thinking, breathing or eating independently. The specialist basically said the baby is a vegetable. The baby is merely surviving becausehe is connected to me. The doctor said there is a 30% chance that the baby would make it to delivery. If the baby made it to delivery, he may not make it through the process. If he makes it through the birthing process, we have to provide treatment/surgeries immediately b/c the baby cannot survive on its own. Best case scenario, the baby could live 10 days, but would ultimately die from respiratory failure. As I said the brain is the biggest issue, there are also minor problems (at least in comparision to the brain). There is a cleft lip and cleft palate, a hole in the heart and cliched hands.Just from looking at the ultrasound, the specialist is lead to believe that it could be trisomy 13. Apparently, trisomy 13 is theworst case-1000 times worse than trisomy 18. We opted first not to do an amnio, but after discussing it today, we will get an amnio tomorrow at 8:30am. We decided we wanted to know the diagnosis so that we could do our research and be betterprepared. This has been a hard day for us. As you all could probably imagine. We are really just numb. I couldn't even cry today because I just can't feel. Despite the hopelessness that has be presented to us. I am still confident in God. I know that he has his hand over this situation. Although I don't understand why, I am just choosing to accept that God is in control and that he must be glorified in this situation. Sometimes I think we just have to stop asking questions, because we'll just go crazy trying to find answers that we may never know. God is good. Let us not forget. I also believe in miracles. Maybe this baby is meant to die in utero and if that is God's plan, so be it. Maybe this baby will live for a short time,and that is ok too. And maybe God will heal this baby in me and give him a brain, and that is fine too. I believe that God is big, no matter how He choses to handle our situation. I trust him. I am scared, but am thankful that I have the Creator to lean on and that he has given us friends and family to encourage and help us through this hard time in our lives.Thank you dear friends for being there for us. Please pray for today and in weeks to come as we find out more. By the way, we are having a little boy. Once we name him, we will let you all know. Also, we haven't been answeringa lot of calls, but appreciate that you have been calling. When the time is right, we will get back to you all. Thank youagain. Thank you.

July 19, 2008
First off, we picked a name. His name is Samuel Arthur. Samuel means "heard by God". Even if we may never hear him, God will. What a reassuring comfort! Arthur is a family name from Jeff's side. Dawson calls him, "baby sam". On thursday we got our prelimary results back from the amnio. I believe the expediated test is called the FSH test (I could be wrong). This test was to determine if the diagnosis was trisomy 21,18, or 13 (which they assumed it was). The test is 95% accurate. From that test, it was determined not to be one of those trisomies. What does that mean? We now have to wait 10 additional days to find out more information. The doctor believes that it could be a partial deletion of a chromosome. Just when we thought it couldn't get any worse, he said, "this is worse than trisomy 13". Ok. God. Really? At this point a partial deletion of a chromosome doesn't mean much. We have to wait on the test to see where the problem actually occured. So, again, we wait some more. In the meantime, we are trying to be strong. My mom just left, so, the following weeks will be a little more difficult. It was so nice to have her here, so jeff and I could just think and talk about the reality of what this could mean for our lives. Again, despite the hopelessness that seems to be bombarding us, I feel peace. I am so confident in God. It is nice to be at a place of peace with God when our world seems to be crashing down. Please just pray that we will continue to believe what is true. Our hearts can easily try to divert us from what is truth. Also, pray that we will be able to get to know Samuel for the time that he is with us. Even if it may only be in my belly. Already Samuel has been a blessing to us. He is showing us just how real our God is. Thanks for listening friends.

July 28, 2008
So, we got more news. We found out the results from amnio on Friday. The tests came back normal. YOu would think that would be good, but still not. NOw we just have to wait for more tests. What a waiting game this is!! The Dr said prognosis is still the same...considering all the anomalies (especially the brain). The last test was to determine if there were 46 chromosomes, and there were. Now this next test has to be sent away to Baylor University and they will actually look at the genes (sounds complex). There are about 106 different syndrome that they can identify through this test. Hypothetically, the test could come back normal. The reason for that is because there are other syndromes that can only be identified through blood. The test is called a CGH. Jeff and I have to give blood tomorrow, then all the stuff will be sent to Texas. I am not sure how long this test will take, but hopefully we will just find out something. I know lots of people are praying for us. Thank you. We will continue to update you as we find out more.

5 comments:

Anonymous said...

I like Hope...love ya, laura

robin rich said...

kristy, my thoughts, prayers, and love are with you. thanks for being willing to share this journey.
robin

Brenda said...

Kristy,
Thank you for the blog so we can be aware of your progress. You are constantly in our thoughts and prayers.
Love, Aunt Brenda, Uncle Tim, and Mike

Evette said...

Kristy,
Just want you to know that we are praying for you all. I know how much it helps to be able to give updates and keep in touch. God is so faithful.
Love in Him,
Evette and Mark

Anonymous said...

Kristy,
With God's help you will get thru this and everything that you so desire will be given to you, Jeff and Dawson. Have faith because faith moves mountain. Trust in the lord for everything is possible if you are a true believer, I know you are.
Michael Christopher.