Life is hard

Life IS hard. More specifically being pregnant is hard and even more specifically being pregnant with a child that you know is not supposed to live is HARD.
Gwen has been not feeling well and the other night I was up with her, oh, like probably at least 10 times and that's not an exaggeration. It's hard when you're really pregnant to just jump out of bed and run to the next room in the middle of the night. A few times she would start crying again as soon as I crawled back in bed! Here I am waddling up and down the hall with every bone in my hips begging me to stop, trying to bend over the crib to tend to Gwen with a very large belly in the way, and if Gwen wasn't waking me up my bladder was! Needless to say LOOOOONG night. That's when it really hit me that I was miserable. I AM miserable. I ache, I have terrible heartburn, I'm tired, I'm swollen, I'm gaining weight like it's my job, Andy's t-shirts are starting to get too short and even my maternity clothes are threatening to not fit anymore. I still have two months to go and I'm miserable and for what?? To just end up coming home empty handed?
This is the point where I had the deep heart to heart with God while I was lying in bed waiting for Gwen to need me again. I told Him I didn't want to do this anymore, that I didn't understand it. That it wasn't fair for me to go through all of this for no reason; to not even have my daughter at the end of it...WHY? I wouldn't say I was mad and I wasn't crying, just more annoyed than anything and, I guess, expecting some loud clear answer that would allow me to be content and get along with my life. You'd be right to guess that that didn't happen. All He said was "I'm not done yet..." grrrr........
I do not for one second regret the decision that Andy and I made to not terminate. We were talking the other day and I was asking Andy some questions-basically about wouldn't this or that be easier, etc, and his reply was "yes, probably, but we are not making our decisions based on what is easier." He is so right and it was good to hear that reminder. We sure didn't move forward with this thinking it would be easier. God continues to show us that we made the right decision, that this is what He wants for us and that it IS part of His plan, but it sure is not easy, or good, or ok. We know that all things work together for good but someone very close to me once told me that it doesn't mean that all thing ARE good! I appreciate that so much because no matter how you slice it this situation is not good, it just plain stinks (to put it mildly). Good things have happened and I know good things will continue to happen for a long time, but it's not good. I don't like it!
We are still praying that God knits Olivia perfectly. Only He can.
We are still praying for strength.
We are still praying for our testimony through this.
Now you can add to the list that I keep my head while being a miserable pregnant woman!!!!
On another note Hezekiah's funeral is this weekend. I think most of you have been keeping up to date with Michele's blog. He passed away a week ago after living and bringing much joy for a short week. I am going to the funeral and with this brings so many other emotions. Please please pray for Michele and her family for obvious reasons. Please also pray for me. I am looking forward to seeing Michele again however the circumstances lead to some pretty heavy stuff for both of us. I think this might be pretty hard for me but I also think it's necessary and will be good for me too. Meeting her and getting to know her has been a real blessing and I look forward to being there for her and I also look forward to seeing how God has used their family as a very bright light through all of this. Please pray for us and for the others that will be there that might not know Him-that they will see the light.

God is good.

I had an absolutely delightful time visiting with Michele and Hezekiah this afternoon! I planned on staying only an hour or so but ended staying for almost three! So many great things happened I just couldn't leave. Michele is doing really well! Other than a little bit of soreness from the surgery she is feeling good and looking forward to going home tomorrow WITH HEZEKIAH! This is amazing considering none of us were really planning for him to go this long! He is doing so well. Keep in mind he is not better, he still has his condition but Michele wanted to have time with him and that is what God has done!
It was great to see her again, but more than that I experienced God's goodness in a way I never had before. You all know that Andy I and I have been through quite a lot in the last couple of years and I have seen God do amazing things in our lives. He's taken care of us and provided for us in ways we couldn't have imagined at the time, but this was different. Here was this wonderful, godly woman who knows she doesn't have long with her son, but was nothing more than thankful and praising God for the time He has given her with him! She has gone through so many emotions in the last few weeks but all I could see was joy! It was great! I left feeling like God was telling me "see, I really can and will get you through this. Don't be afraid. I can still bless you, just let me." I can only pray that I have time with Olivia too.
I just want to say that the staff at the Women and Babies Hospital in Lancaster gets two thumbs up from me! Michele introduced me to a few of the awesome nurses that were taking care of her and, after learning about Olivia, they also reached out to me! Even though they new that I wasn't delivering there they still gave me their names and numbers and the numbers of other people that could talk to me or point me in the right direction for anything I might need. Here is the real kicker. At one point the chaplain and a dr. came in to check on Michele and Hezekiah. They were both part of the palliative care team there and again Michele introduced me. The chaplain, a very sweet and sincere woman, looks at me and says "wait, I've been praying for you. Your baby is Olivia." She turns to the dr. and says, "this is the girl I told you about." They knew me and my story but I didn't know them. They didn't know about the blog so I don't know how they had heard of us. They didn't really know either, just hearsay I guess. They also offered to do anything they could for me.
God is good. He is showing me new ways every day that He is walking right along with me. I don't know the outcome of all this. I don't know what the future holds but I know that this entire story, from beginning to end, is His work in our lives. He has designed this whole journey to work according to His plan for us. I am so grateful tonight that I know Him and I know that I do have HOPE no matter what happens.

Baby Hezekiah

Hi friends. Baby Hezekiah is doing well!! His condition remains the same but he is wowing them left and right with all he can and IS doing!! Michele said his body is totally working and he is doing everything he should be doing as a newborn! Michele sounds well and is feeling well considering the surgery. She is so happy that she has this time with him and providing nothing turns for the worse they are planning on bringing him home tomorrow!! I plan on seeing them this afternoon and I'm really looking forward to talking with her and seeing this little miracle bundle! I'll update more later. Thanks so much for the prayers.

Please Pray

Hi friends.
I just want to ask that you all take a minute (or several) to pray for Michele. She is having her c-section tomorrow morning. Needless to say she is scared and so many other emotions. Her surgery is scheduled for 8 am. If you're new to this blog I wrote about her a couple of posts ago. She is a friend who is going through something similar to what I am going through. Her family is also going through a hard time with this. Pray for the kids that they will feel God's arms wrap around them and be comforted. Pray for Michele and her husband that they will also feel God's arms and peace that only He can give them. I will let you know what I know as soon as I can. The baby's name is Hezekiah.

My doctor's visit today

I had a doctors appointment today. Just a normal checkup. Everything is still fine...well you know it's not FINE but pregnancy related it's fine. I'm growin' and gainin'....boy am I gaining! I guess it's from all the Christmas cookies!! Anyway Olivia's heart rate still seems to be consistent and in the normal zone. I'm just waiting for the time I go in and it's drastically different, whether high or low, because this is what I'm told tends to happen with babies like Olivia. Their heart rates aren't really a good indicator of anything that could be going on, distress etc, because they are usually all over the place for no reason. This is why they tend to not even monitor the babies during delivery because it wouldn't really tell them anything.
I asked about other ultrasounds. Dr. M said if I wanted one he would gladly set it up but there really, medically is no reason. Nothing they would see at this point could be helped. He used the example of if she is small (which, judging by the fact that I'm sure I have a little baby butt up against my rib cage, I'm sure she is not! After all she IS a Fretz!) because of the tendency of strange heart beat patterns and the fact that her brain is not developed right there would be no way to know why or intervene. It is really truly a waiting game right now. I agreed that I didn't really feel the need to have one. I have plenty of pictures from the previous ones and, knowing me, I would probably get my hopes up to see that things had turned around and she was fine and potentially be heartbroken when they weren't. If this was something like a heart defect or something that we would monitor and study to be prepared for treatment when she was born that would one thing. Unfortunately it's not like that.
I also asked AGAIN (ugh) about the likelihood of this happening again. No one can say that it absolutely won't happen again, obviously. I've learned that everyone has at least some chance of a situation like this happening and when it does happen that chance goes up about 1% of it happening again. It still leaves your chances very small so don't worry! We will test from the placenta when Olivia is born to know what all was really going on but if it's a true Trisomy 13, and all signs point to yes for that, then most likely it's just something that happened. If we are carriers of something genetic that caused it we will know that later, but even so it doesn't mean that there is a big chance of it happening again and they are saying that right now we shouldn't worry about that, nothing indicates it yet.
I don't know why I can't get off of that. I grieve for Olivia, I hurt, I'm concerned about her but I also can't shake this very real fear that I am going to have to go through this again. I don't know why. I think it's just the evil one using this way to attack me. He knows I'm a worrier by nature and he uses the good days to pop this little though back in my head. I just keep telling myself that God has blessed me with a healthy beautiful little girl and He has also blessed me with Olivia. And if He wants to bless me with more children after this than He will, and that's that!!
Keep praying. We love you all and your love and support of us has been very evident in the past couple of months. God is using you all to carry us right now and He has shown us a lot about you, about us, and most of all about Him.

Happy 2010?

I was thankful for the Holidays. I rushed around until the last minute getting gifts bought and wrapped, but even so it was nice way to stay busy, see family and have fun with Gwen. I also thought a lot about Mary and how she gave birth to her precious son only to give him up to a horrible death and what that all means for us. Now that they're over all I can think about is what is yet to come. All of the "Happy New Years" didn't really have the same charm as they have every other year. All I can think about is "is this going to be the worst year of my life?" I feel like I've had way too much time to deal with this. I have known that Olivia is sick for two months and I have a little less than three months to still know. All this knowing has brought me to a point of almost numbness sometimes. A few of you have maybe heard me say this but sometimes I KNOW what is going to happen but I'm not sure I really BELIEVE it. I'm not in denial and I don't think the doctors are wrong. I've seen the evidence myself. But to try to think ahead and be prepared? It's like I don't really believe this is happening. And I sure don't feel like I'm carrying around a sick, weak baby. She is very active and strong but I'm told this is completely normal. I pray all the time that God give me what I need to be prepared for whatever happens and I still find myself in this state of unbelief. The only thing I really know is that God is saying "I'm not done yet". I don't believe that means He is telling me that everything will be ok with Olivia, I just believe that He is telling me that no matter what He's not done yet-with her, with me, and with anyone that this situation touches. I do find comfort in this and I do know that He can take her and still bless us in ways we can't imagine but it's still hard to be excited about 2010.
I have a doctor appointment tomorrow. Just a normal check up. To answer some of the questions that a lot of you have had-I don't know if I'll have any more ultrasounds. They've kinda given me the vibe that since it's really just a waiting game and nothing can be done it's all about me now. So, you know, the normal belly check, weight, blood pressure, all that, but not so much anything for Olivia except checking her heart beat. I understand this since there is no intervention for her affliction. I wish that wasn't the case but we know what we know and any other procedures at this point would probably just add stress. I'll find out more about this tomorrow and some of the other questions that you and I have both come up with. We are still praying for a miracle-for total healing for Olivia.
One last thing- I had the lovely opportunity to meet a new friend this past week who is going through something quite similar to what I am going through. Her name is Michele and I met her by contacts through my dad's church. Her baby boy was due a few days ago and Michele found out about a month ago that he has anencephaly. This is not what Olivia has except the fact that it affects the brain and head. Like Olivia, Hezekiah is not going to live long and Michele and her family have already made all the appropriate arrangements and as you can imagine are, well, just waiting really. Please pray for them. Her and her husband have six other awesome kids and this will be hard on all of the them. Pray for peace that passes understanding, strength and comfort and remember that her children will grieve hard as well. She has given me permission to pass on her blog info. Check her out at arrows4godsarmy.blogspot.com
Until next time keep praying for the things that I have mentioned previously:
God's healing for Olivia (and Hezekiah for that matter)-we know that this is quite possible and that God could choose to lay on us an amazing ministry with this miracle.
We also know that our ministry may better be used if He chooses not to heal her so we pray that God gives us all we need if He chooses not to do this.
No matter what we still need strength and peace and comfort right now
and last of all keep praying that this pregnancy will continue to stay healthy and "normal".