Mad

I'm mad today. I think I've done a pretty good at being positive and reminding myself that things could always be worse. But today I AM VERY ANGRY. I'm so @#$%^ing sick of not feeling well (mainly cramping). And for what? It's not like I'm getting a baby out of this (not likely anyway) but yet I have to be reminded ALL THE TIME that I'm pregnant because of the cramping. I am so angry that I don't know what to do. I'm embarrased for writing about this but part of me simply does not care. I'm 21 1/2 weeks along. How long is this going to drag out? How many times will Tyler have to see me cry? I know it upsets him and I hate that. He's only 3 and he shouldn't have to see him mommy cry so much. The Bible says that God does not give us more than we can handle. I'm not upset with God but he needs to know that I am slowly cracking like an egg that is being boiled in pan of water.

Is it normal?

Do you think it's normal that I'm tired emotionally and physically almost all the time? I'm not a high energy person as it is (gee, as if you can't tell that just by looking at me) but holy cow my brain and body are like slugs! I am getting enough sleep thanks to Ambien (OB said it would be a good idea for me to take it each night to help me get through this 'situation' and it's not addictive) and I'm trying to keep my stress level low. Yet, I'm still tired. I think it would be a great idea to go to the gym tonight and walk on the treadmill. Maybe if I "spend" some energy I can "get" some energy.

Anyway, I'm thankful that I have this blog to write about my feelings and what is going on. I feel badly that I have not written anything about Tyler lately. He's so freakin' cute. To anyone who reads my blog, I hope you and your families are doing well and I hope my posts are not too depressing. Much love, Jen

Level 2 Ultrasound today

I went to The Women's Institute at CMC Main this afternoon to touch base with the genetic counselor and Dr. Stubbs and to have the Level 2 Ultrasound. I was emotional all day as it was and sitting in the waiting room 45 minutes did not make me feel better. I wasn't happy about that but instead of getting ticked off I cried. Nice.

In a nutshell here is the update: still low on amnio fluid, Kevin has grown and is only a week behind in growth as opposed to 10-14 days like he was last time, He does not appear to have any deformities, there is still an abundance of fluid under the back of his neck, and I could see many neat things on the screen. I could see Kevin's spine so clearly. Dr. Stubbs was so very kind to me and so was the ultrasound tech. Stephanie, the genetic counselor answered a bunch of questions for me. This lady is WONDERFUL. She and I will work together over the phone and in person until Kevin is born and even after. We talked about the possibility of Kevin living and maybe going home with us (in this case Kevin would not live past a few months or a year). I can't get into that right now because it's way too many steps ahead. She said that it is unlikely that he would live to that point.

So,I may have a stillborn child (it's too late to call it a miscarriage) or we may have a later term or full term stillborn or live child that may pass away very quickly. So many possibilities. You know what my favorite possibility is....for God to heal Kevin and for the Trisomy 13 to disappear. :-)

Ultrasound

I have another Level II ultrasound tomorrow. I'm a bit anxious but also a little excited. Tomorrow I will be 21 weeks along. I hope little Kevin is doing okay. :-)How can I be so in love with someone whom I've never met?

Tears of Joy

Everyone knows I've been crying A LOT over the past few weeks. Do you know, however, that many of the tears are from my heart being touched in a positive way? The things people say, the hugs, the e.mails, and other kind gestures fill my soul with joy. As I look back over this time period of my life I know that any pain I remember will be accompanied with much gratitude and thanksgiving. :-)

Today's OB Visit

Saw Dr. Phillips today. There is still a heartbeat for baby Kevin. Despite the fact that the doctor I saw on Tuesday (Dr. Revell?) said he thought I'd be miscarrying any time, Dr. Phillips said this could go on for another 6-8 weeks or longer. He still wants me to come in each week for a heartbeat check. He was kind and listened to me for several minutes. I had been so sure that I did not want to terminate the pregnancy but over the past 4 days or so I was seriously considering it. The cramping was getting the best of me and I felt like I was breaking down emotionally. I craved/crave a sense of closure and normalcy (whatever that means). It's okay if you judge me for considering a termination; all I can say is you have to be in the situation to fully understand. I have a strong faith in God so for me to even consider termination probably seems contradictory.

I would not or do not begrudge anyone who would terminate in a situation like this or with other severe birth defects. Again, you don't know what you'd do unless you are in the situation. I am really going out on a limb by even writing about this. Uggg. Just do me a favor, if you're upset by what I've just wrote about, please do not tell me because I honestly don't want to hear it.

I met with Nicola for a nice Thai lunch and she listened to me openhearted. I can always count on her, and several other friends for that, and just hearing myself talk, I decided that I don't want to terminate. I then went over to Megans because I wanted to talk to her. She is also an openhearted listener. She said some things that rang true in my heart and my desire to not terminate became even stronger. I'm thankful that Rick is in support of whatever I decide to do. I feel badly for his emotions, too. I feel badly that I have not been as good a mom to Tyler as I would normally be.

I see the OB specialist at The Women's Institute on Tuesday for another Level 2 Ultrasound.

I would LOVE for Kevin to be a 'case' of Trisomy 13 that gets cured. I would love for him to totally mystify the medical community. I would love to be able to tell him when he's older, "God performed a miracle on you. He saved you from an awful condition. We didn't think you'd be around for us to raise you and love on you."

Another update

I have not gone to the hospital. I had cramping last night and a small bit of back labor but it was not awful and this morning I've only felt a few cramps. Go figure. I'm glad I have a doctor's appointment tomorrow at 10am to check for a heartbeat. I will also ask the doc to check my cervix. I have some things packed to take to the hospital and I have friends who have generously said they'd be 'on call' to take care of Tyler if/when I go to the hospital.

My emotions are pretty good this morning. :-) I was a mess yesterday.

OB Update

A note: this is a bit graphic so please pardon me if this makes you uncomfortable

Had my appointment at 2:40. By then the cramping was worse which I actually glad about because I wanted the doctor to be able to see what I was talking about. The doctor was able to find a heartbeat right away however he said that the cramping was not a good sign. Then he felt up into my cervix and he said that my uterus was expanded (or bloated or something like that). That is a sign that my body is trying to expel the pregnancy. He said that it would be wise to go home and pack a bag and that he thinks I'll need to go to the hospital within 24 hours (more likely tonight). He called the on-call doctor to tell him to possibly expect me. I'm supposed to go to the hospital if there is any bleeding or if the cramping gets worse/closer together like contractions. He said that even though there is still a heartbeat, my body is likely preparing for a miscarriage anyway and that during the miscarriage the heart stops. I didn't know that could happen. Is this all real?

Hmmmm....

Update: called the OB's office and they said I ought to come in. Going in at 2:40pm.


I've been having odd pains in my abdomen/stomach/uterus area over the weekend. They were most strong last night. They don't seem like normal pregnancy pains, like what I had with Tyler. I know that each pregnancy can be quite different from one another but my gut tells me that just isn't it. I was just about to call the OB's office as I was writing this but I don't have the pains currently so I suppose it doesn't make sense to call until I actually have the pains. I have a feeling I know what the pains are from but I don't want to speculate. I go to the OB on Thursday for a heartbeat check. I should also get the complete results from the amnio today; the ones we got a week and a half ago were the prelim. results.

New Week

Rick has been playing single father the past few days. I started to feel really crappy on Thursday morning and by Friday night my voice was gone. I was basically upstairs in bed from Friday night until this morning. I'm not 100% better but I'm on my way. Tyler ended up with some version of whatever I had/had so that is no fun for him. Rick has today off because of Presidents' Day and I was hoping we could go out and do stuff as a family but at least we're all together.

We were not able to celebrate Valentine's Day but Rick was sweet. He got me a cute card and some Jelly Belly jelly beans that he arranged like flowers. He used little zip-lock bags, paint brushes, and a cup for a vase. It's kind of hard to explain but it looked cute! He also got strawberries and chocolate for us to melt to dip the berries in. We'll do that tomorrow or something when we're all feeling better. Thanks to Rick for letting me totally chill out in bed this weekend.

More Powerful

There is something that has been more powerful and meaningful to me over the past few weeks than the pain I have been going through. It is exactly the same way I felt when Tyler was in the NICU and when my mom passed away. It is the support I have been receiving. It makes the pain less. So many people, family and friends have said, "Jen, I just don't know what to say." Well, that right there is meaningful. People don't need to say anything. It's just so obvious that they care. I feel badly that my situation has made other people feel badly. I don't like to see other people cry over a situation I'm in. But I thank you for caring.

Whether or not we get a miracle (part of me really thinks we will) I have been blessed in such a way that is stronger than the pain I've felt. The things that have happened over the past few weeks: kind words, looks of empathy, tears, cards, nice e.mails, phone calls, a meal, someone loaning me an awesome book, people sharing their experiences with me, and especially PRAYERS have impacted my life in a way that shows how much people are kindhearted. I always knew that people are kindhearted but this has been especially abundant.

Rick, I feel badly that I've let you down. I've been useless lately. Please do not take this personally. I care about you; it's just that I don't care about the house or laundry or chores. I have been trying (and doing pretty well) at focusing on Tyler, the child that we already have.

Once again, this situation will not break me. Sure, I will have some meltdowns but I'm okay with that. I actually feel pretty fortunate and blessed.

Much love to all of you.

Update

I went to the OB's office this morning. I got teary-eyed from the moment the gal took my blood pressure. I waited for Dr. Phillips and a tech came in to check the baby's heartbeat. Even though my heart was weighed with guilt for feeling this way, my brain hoped that there would be no heartbeat. There was a beautiful, lively heartbeat. I had mixed feelings. The hopeful part of me was glad but I also thought, "I just need this to be over with."

Dr. Phillips was really nice to me. I had several questions for him and I feel a bit better now that I have some more answers. He said that he suspects that the baby will pass away soon, especially since the amnio showed I don't have a lot of amnio fluid (not a good sign). He said I am past the point of a D and C and he explained what will happen when I have to deliver Kevin. He said that he thinks I'm dealing with this very well (I don't feel that way most of the time) and he gave me a hug. He suggested that for my own peace of mind I come in once a week for a heartbeat check. He said that I may have signs of miscarriage or labor but that it's quite possible I won't have any idea that the baby has passed away. Therefore, it's good to get the regular heartbeat checks. I will still have ultrasounds through The Women's Institute about ever 2 weeks I think.

The tech who checked the heartbeat could tell I was having a hard time. She said that kindest thing to me when I told her I am hoping for a miracle, "You never know....doctors do not have the final say, God does." Whatever happens, this horrible situation will not break me. I even said that out loud the other day when I was driving. However, I am allowing myself to have a meltdown here and there. I know God did not do this to me in any mean way. I do not blame him. I know Kevin will be so happy in Heaven. But God, will you please give me a miracle? Will you heal my son? If not, it's okay. I love you, Kevin. My little bun in the oven.

Sooner than Later

I think my attitude was a lot better two days ago. I hope you can understand what I am about to say, I need this to be over sooner as opposed to later. I'm not terminating the pregnancy or anything like that but I just need this to end. I had hoped that Kevin would go full-term and that I'd get to hold him. Of course my first choice is that God will perform a miracle; that has not changed and will not change.

I just cannot get away from this. How can I? He's living inside of me. I'm so tired and I have small cramping quite a bit (nothing strong enough to notify the doctor about). I'm so unmotivated. I have been so bad about cleaning and I'm leaning on Rick to the point that he is frustrated. He's been taking care of Tyler a lot. I've been bad about cleaning and doing laundry ever since I've been newly pregnant so it's not like this is a new thing. However, I think I understand why I've been so tired; my body has been trying to grow a baby that really shouldn't even be alive.(Most Trisomy 13 babies don't live past the 1st trimester.) I think my body has been working triple time, if that makes sense.

I really don't mean to have a pity party for myself. I'm just having a meltdown. A few people have commented on how well they think I've been handling all of this. Well, this is a time in which I'm not handling it well. How long will this go on? I think for the sake of me, Rick and Tyler it needs to end soon. Nonetheless, I continue to pray for my miracle for Kevin. :-)

Drained

It's been two days since we received our bad news. I cry a lot, on and off. I've not been sleeping much. I think this is all to be expected and is pretty normal. The main problem is that my mind is too busy to sleep but I'm too tired to get any cleaning or anything like that done. Rick is being kind, loving, and supportive. He's been taking Tyler off my hands so I can try to rest and so forth. Thank you, Rick. I have a ton of support around me and for that I am THANKFUL. I have explained what will be happening over the next few/several months to some people but I'll do explain it here:

There are a few different scenarios for baby Kevin. I am praying for a miracle. God has the ability to cure all of the things that are wrong with my unborn baby. Only God knows if he is going to give us a miracle. I do not expect a miracle but it would be such a blessing.

If we do not receive our miracle then baby Kevin will pass away. Some people that have Trisomy 13 have survived and there are even a few that grew up to be adults. I am not banking on this because these survivors have so many physical and mental issues. I am almost at week 19 of my pregnancy. If Kevin passes within the next few weeks the doctor will be able to perform a D and C type procedure. This would probably be the least physically painful for me. If Kevin passes after week 21 or 22, I will be induced and will have to give birth to a stillborn Kevin. If this is the case, my prayer is that he will be big enough to hold. Trisomy 13 babies are small. For example, he is currently measuring about 10-14 days behind what he should be.

The pregnancy could continue to full term. One of two things will happen. 1. The physical demands of labor may likely cause Kevin to pass. 2. If he doesn't die then, it will probably be within the first few days. My genetic counselor said Trisomy 13 babies rarely last past the first month.

Part of me hopes for a miscarriage as soon as possible.
Part of my wants him to go full-term so that I can hold him, love on him, take photos with all of us, and just spend some PRECIOUS time with him. Of course this will be terrible heart wrenching on me and Rick.

I have been praying for God's will to be done. I have begged him for a miracle. I am not upset or angry with God. If God takes baby Kevin I will take comfort in knowing they are together and that I will get to be with Kevin (and my 3 other miscarried babies)in Heaven when I pass away. Me, Rick, Tyler, Kevin, and the 3 miscarried babies will all be together! That's awesome.

This situation is sort of in limbo...it's like we're painfully waiting for Kevin to die. I talk to him a lot. I tell him I love him about a 100 times a day and I rub my tummy a lot.I'm thankful he's in my tummy and that he is a part of my body.

Once he does pass, things are going to get a lot worse before they get better but at least I've been given the gift of knowing what the fate was. I mean, some moms' babies die from defects that no one detected through Ultrasound or Quad Screening. What a shock that would be!

If you feel comfortable in doing so please pray for a miracle for baby Kevin. Thank you.

news

I cannot get into this much because we need to tell family first but the baby has Trisomy 13. This is a very, very bad thing. We found out it is a boy. He will be named Kevin Joshua Burns. Please pray for us, we're going to need it.

Worse than expected

Laura, if you're reading this please do not say anything to any family members. Rick and I will let people know. I'll try to make this brief since I'm a bit emotionally drained. We will get prelim. results from the amnio on Wednesday. However, I had a level 2 Ultrasound today before the amnio and they saw something that was not good. I walked into the appointment thinking I had a 1 in 10 chance of having a baby with Downs and the Ultrasound results yield a 1 in 2 chance. I'm heartbroken. The amnio will tell us for sure. BTW the actual amnio wasn't that bad. It didn't hurt much at all.

Amnio on Monday

I've spent the weekend in bed trying to get over a nasty sinus infection. I really need to be at my best for tomorrow's Amnio. I'm kind of nervous but not too much. Thank you to Nicola for watching Tyler during my appointment! My friend from Bible Study, Brigetta, offered to go with me so I won't be alone. This really touched my heart because I hardly even know her. Please send good thoughts my way or say a little prayer that the amnio goes really well. It's at 2:15pm in Ballantyne. Thank you.