Wednesday, December 28, 2011

What I got for Christmas

This is the note I posted on Facebook to announce my pregnancy.  I posted it on Christmas day. 

Merry Christmas to All!!

     James and I are proud to announce that we will be welcoming our second son and fourth living child in May.  This announcement was a long time coming, of course.  Mostly because I have been excited for some time to share my testimony.  Here is our story:
   
     This past September you might recall me posting a status update about a whole swarm of dragonflies I walked out and found in front of my house.  That was September 10th, the same day as Caleb's birthday party.  It was an amazing sight to see and one I doubt I will ever be priviledged to witness again.  Twenty or more dragonflies just zipping right by me and around me.  It was amazing.  It was puzzling.  I wondered what they meant for a few days until I stumbled upon an etsy listing for a sculptural piece.  It was a baby with angel wings holding a dragonfly in it's hands with the caption underneath that said, "Go tell Mommy, I'm okay."  This really got to me.  I wondered if those dragonflies were sent from Gracelynn. Ultimately I decided I had been sent a sign from Heaven.  Though my pain is still immense for our loss of Grace and some days I feel like the wind has been permanately knocked out of me, I am happy knowing she is okay.  I also decided then that maybe I wasn't as insignificant as I thought I was.  Perhaps the Burke family is most important to God right now as we heal for our loss.  Maybe we were always so significant to God, we just didn't see it.

     There are many times in life that we feel so small.  We feel like God is there, but we just wonder if He is listening and willing to answer our prayers.  I have to admit that I felt pretty alone and hurt when we got Gracelynn's diagnosis in June.  There were days I couldn't help but fall to the ground and just weep at what was certain to happen though I had as much hope as I possibly could that she would fight through her heart problems.  It wasn't until I started to see things from a different point of view that I learned what it means to just have Faith.

     So on September 23rd, I took my first hpt and it was negative.  We had just tried that first cycle after having Gracelynn and expected nothing.  In the past, the more I've stressed to concieve the harder it was.  I had this feeling though, that God would work quickly to send me another son or daughter to help heal my heart and to fill my empty womb.  I tested on the 24th and got a positive.  Immediately I started inputing dates into the various websites.  (I am a dork) I needed to confirm my conception date and to know my due date.  I put in, just for fun, a conception date of the 10th (the day Grace sent the dragonflies) and came up with September 24th being the first day to get a positive.  I know this baby was given life on the 10th for many reasons that are concrete (and tmi, lol), but also because I have the faith and the belief that this was how it was all supposed to work out.
   
     I really can't describe how it feels to know without a doubt that you have an angel watching out for you.  It seems to me that maybe we are all sent these signs and are all given the opportunity to put any doubts we may have to rest.  I know that God is watching over me.  I know that I am important and significant to Him.  I know that I have an angel in Heaven waiting to be reunited with her family one day.
   
     I wanted to share this message and this news on Christmas because I felt like if there was ever a time to remind people that there is so much more to this world than what we are doing in our everyday lives, this was it.  There are miracles all around us and we are all special enough to witness them if only we stopped and opened our hearts and our eyes.
   
     So we are having a sweet baby boy in late May.  He is healthy and doing well.  We are so very blessed and excited to add to our family.  There is nothing more important to us than the legacy we will leave to this earth.  We believe our legacy will be raising our imperfect children to grow up and honor God, do good everyday and stand up for what's right.  There is no amount of wealth or status that could equal that.  If you've made it this far, Thank you!!  =)

Monday, December 19, 2011

Gracelynn's Due Date

Gracelynn had a few different due dates.  The 22nd, the 20th and towards the end the 19th.  I went with the 20th, but does it really matter.  She should be here right now.  She should be in my arms or at least here getting the medical care she would have needed.  I have to wonder if I would have been emotionally ready to handle open heart surgery on a newborn.  Part of me is thankful that she didn't have to go through all the surgeries she would have surely needed.  The mother part of me is just angry and frustrated that the rest of my life will be spent without her.  I want her and need her so badly.  I usually have to remind myself that this was His plan and He knew best. 

I woke up today and got on the computer to catch up.  I hadn't been on in several days.  I came across one article after another discussing the Duggar Family sharing pictures of their daughter's hands and feet at the memorial service.  Articles say those who attended the memorial were shocked when they were handed a card that had a picture of someone's hands holding the baby's feet and the saying next to it said no foot is too small to leave a footprint on this world.  Or something to that affect.  I can't pull it back up now, because it's all too upsetting.  My heart goes out to the Duggars.  Michelle is now right where I was back in July.  Just a slightly different situation.  I can tell you that delivering a stillborn baby is tough, traumatic and scary.  I don't understand the mentality that taking a picture of a baby who has passed away before you ever got the opportunity to lay eyes on them is wrong.  It's not.  When you have a living child, you have plenty of time to build memories and hold onto things that will remind you of them long after they grow up.  When you give birth to a child that has passed away, those moments in the hospital afterwards are all you have.  There is no second chance to make memories or take pictures of that child who has passed away.  To me, you should have every right to do whatever you can to perserve that moment in your life.  To have a stillborn child, it isn't something shameful.  It happens to women of all ages, sizes, races, religions, condition of health and from the beginning of time.  Women have strugged with miscarriage, stillbirth and infant death since life was first created.  I just wish I could change the minds of those people who find pictures of our children who have passed away offensive.  If I could explain that it was all we have to hold onto and look back on.   

Saturday, September 24, 2011

Dragonflies

Does God exist?  He does.  I am as sure of this now as I ever have been.  I have a lot to share, but I won't be able to share the whole story right now.  So on September 10th, I was getting ready for Caleb's party.  We had it at a clubhouse about 15 minutes away so there was a lot to put in the car to bring.  I asked Lily to start carrying some things out.  She said that she wouldn't, that there were horseflies out there. I stuck my head out my front door to find a huge swarm of dragonflies right in front of my house. I'd say 20 of them. I walked right out into the middle of them and just stood there. Despite being in a huge rush to get things done for the party, I stood out there probably 20 minutes hoping one of my neighbors would pull in and share it with me. And one of them did, it was amazing!!  I tried to take a video of it, but those things are so darn fast. Anyhow, I live NOWHERE near water. I have never in my life seen more than 1 or 2 at a time. I wondered what this was all about for days. Some said that it meant I would have good luck, but I don't believe in luck. I believe in blessings.

So I logged into my Etsy Account that I haven't used for months on September 16th and I saw these cute little acorns. I loved them immediately. I started looking around the store and immediately realized that I have seen this seller's items before. Just about a week after I found out about Gracelynn's condition, I stumbled upon a blog titled Caring for Carleigh.  I had went there to see her birth plan for when her daugther was born.  A birth plan for a baby that has passed away is a whole lot different than one for a baby that is living.  Her birth plan gave me some great insight and information.  Anyhow, she had just posted about an artist she had purchased from.  They are sculptural pieces to honor and remember Angel Babies.  I PRAYED that I would never have the need for such a thing.  Well that day I stumbled across that etsy shop, I ordered the angel baby holding the dragonfly. I get chill bumps thinking about it now. What an amazing miracle to have found that piece and to hope that those dragonflies really were sent by Gracelynn. I would have never considered that before.  Here is the piece I bought, though mine will be flesh colored.


Like I said, there is more to this story and it is amazing.  I can't wait to share it with you when the time is right.  Thank you!!

Here is her shop:

http://www.etsy.com/shop/TheMidnightOrange

Tuesday, September 6, 2011

She's Home

Gracelynn is home.  I thought it would make me feel better, but it didn't.  I do feel more "whole" now that she is finally laid to rest with us....but the pain is still there.  I promised pictures, and here they are:

Here is her tiny little urn.
And here is the footprint and handprint plaque that I made from the molds the hospital took.  Her hands and feet were so tiny and so precious.


Here is the outfit she wore at the hospital. 
They provided it to us and let us keep it, of course.


Finally, here I am holding her hand with just my finger.


I finally ordered the vinyl I needed for her bench where we keep her things. 
This is the saying that will go on the top of the bench where it lifts up.  

"A life so brief, a baby so small
had the power to touch us all"

Thank you for taking the time to read my blog.  I would love for you to continue to pray for my family. 



Wednesday, August 24, 2011

Come Home

I am so sorry I haven't updated in awhile.  If anyone is still out there, reading this...Thank you.  I am having a hard time doing anything I did while I was pregnant with Gracelynn.  I feel like I have to keep moving.  Being online is hard, because I have to stop and think about things.  I can't get on babycenter.com, though it helped me so much during my pregnancy.  I can't read any more posts/blogs/stories about women struggling with their loss.  I feel like my own pain is all I can bear.  I just don't have the strength to cry for someone else right now...and I always do.  My heart goes out to women who have gone through what I have.  It's awful.  And the grief is overwhelming.  I find myself going back in my mind and wanting all those things to happen again during that week I had her.  I just want one more chance to be pregnant with her again, or even just to see her again or hold her again.  The more I get done everyday, the less chance I have to sit and wish I could go back in time and relax and know what the outcome was going to be and enjoy my time with her when she was alive.  Writing this blog is one of those things that just brings back the hurt....instead of healing it like I thought it would.  Maybe one day I will look back to this and be happy I wrote out what my time was like, those six weeks.  I'm not sure what is needing to be changed in me....but I'm going to pray for God to show me the way.  

Well.  I should update that we are still waiting for Gracelynn to come home.  It's been over 4 weeks since she passed and we had hoped to have her back with us at least a week ago.  I know they are doing all they can, but I'm getting impatient.  I have to wonder if that is what is making me so stressed out.  James and I both agree that we feel like someone from our family is missing and we can't be at peace until they are back with us.  We have her tiny little urn waiting for the funeral home to call us and say we can bring it in, so we can bring her home.  I took some pictures of her hand and footprints. I will work on getting those uploaded.  In the meantime, please say a prayer that Gracelynn comes home soon.  We need her with us.  Thank you!!   

Tuesday, August 9, 2011

Pain

I'm not sure what to update this blog with since Gracelynn passed away.  I feel like all I can talk about is how much it hurts to not be pregnant with Grace and just how much it hurts that things went the way they did.  I have good days and bad days, but mostly I am just a thought away from crying because I am thinking about Grace again.  I can't recall what all I've shared on this blog.  Did I share that her name is Gracelynn Mercy Burke?  That she weighed 6 oz and was 4 inches long and came at 12:05pm on 7/26?  I do have more pictures to share and promise to get those uploaded soon.  I have pics of the molds they made me of her hands and feet.  They are amazing.  Her hands and feet were so tiny and so beautiful.

So what am I doing now?  I'm spending a lot of energy cleaning out my house and organizing it.  Grace's pregnancy was really tough on me physically and emotionally.  Before we found out her diagnosis, I felt like I was much more tired than I normally would have been with my previous pregnancies.  I have no idea if that was really the case or if it really was something related to carrying her.  Physically, I feel fine now.  After I came home from the hospital, which was the same day I had Grace, I had a few days where I over did it with the kids and I paid for it.  One day I felt very weak.  I was taking a nap on the couch with the kids sitting around me.  I awoke to a loud crashing sound and found Lillian and Caleb sitting there watching TV and Addison not in sight.  She had snuck into the kitchen and covered it in glitter and chocolate.  I tried to carry her upstairs and give her a bath.  I put her in the dry tub and laid down on the floor and called James.  He came right home and bathed her and put her down for a nap for me.  Addison's mess took me days to clean up.  But I started to feel better and was able to do it.  I feel like I let my housework get behind during my pregnancy and it is now all caught up.  That's a great feeling, at least. 

I've also been working on figuring out ways to make sure Gracelynn is thought of often at our home.  I want her to be remembered as my fourth child and that she was an amazing blessing to our family.  I took a small bench I found on the side of the road a couple weeks ago and made it into a place to keep all of Grace's things.  I spray painted it and ordered lettering to put on it that will honor her.  In it is the oufit the hospital put on her and took pictures of her in, her hospital bracelets and mine, papers given to me during my pregnancy, the doppler I used to hear her heartbeat, the blanket James went out and bought for her after we found out she had passed away, and a teddy bear I bought just for her.  I call it Gracie Bear.  We also ordered her urn.  We are hoping to have it before they call and say that her ashes are ready to be picked up.  It's taking a bit longer for them to get that done than I expected.  Of course I am very grateful that they are taking care of it for us, free of charge.  I'm just eager to have her back with us.  I feel like a member of our family isn't with us.  

Wednesday, August 3, 2011

Our Time with Grace

It's probably time to start talking about what our time with Grace was like. It might take me a few posts to complete this. 

So we went into the hospital on the 25th at about 6or so in the evening.  At 7pm, Dr Duke came in and inserted some kind of seaweed sticks into my cervix.  She was able to do quite a few as I was already in labor. The goal of these sticks was to expand and open my cervix a bit to make it more viable for an induction the next day.  It worked.  They dropped out the next morning.  In the mean time, I had a difficult time sleeping and relaxing.  There was a lot of crying and reading scripture and just praying.  I had an awesome nurse during the night.  Her name was Thelma.  =)  It wasn't lost on me that her name was the same as my Aunt Re.  (Thelma Marie, who meant the world to me)  Thelma was very kind and said some things that really hit home and made me think God had sent her that night to me.  Just a few days ago we got a sympathy card in the mail from her.  I am grateful that I had a nurse like her that night.  Although, I can't complain about any of the nurses I saw in the time I was there for Gracelynn's labor and delivery.  MVH was very thoughtful and considerate to our situation.  They put us at the end of a hall with few neighbors.  Across from my room was another mom who had a loss.  They put something on our doors so that any who enter know this isn't a joyous occasion they are walking into.  That night, however, I could hear the baby and mother's heartbeats in the room right next to me.  I gotta say, that was a bit difficult to relax to.  

The next morning, Dr. Duke came in and inserted two cervitek capsules.  They started working pretty quickly.  I was in labor from 7 to 12.  Just before 12, Dr Duke came back in and was going to give me my second dose. She said that after the second dose things start to go much quicker and I should be careful getting up to use the restroom.  I commented that I think I am getting ready for something to take the edge off the pain and that the contractions were about a minute apart.  Up to then I wouldn't take anything.  I refused a sleeping pill and all the goodies they offer to make you more comfortable.  I was still pregnant as far as I was concerned and Gracelynn didn't need any of those goodies.  I guess that doesn't make sense.  After hearing how close the contractions were, she thought it best to check me.  She did and I was complete.  I had gotten to ten and didn't complain until the end.  So this is what natural labor feels like, eh?  

So she said it's time to have her and I just needed to push.  This is when things got pretty tough.  I was more frightened than I have ever been in my life.  I had no idea what this next moment was going to bring and what it would be like to deliver a stillborn child.  I focused on James and pushed.  She came right out, water breaking first.  I cried like I've never cried in my life.  Like, out of control sobbing.  It was by far, the most difficult moment I have ever experienced in my life.  There is no way to describe the emotional pain of delivering a stillborn child.  My daughter, Gracelynn Mercy.  I was able to deliver the placenta quickly and they left me and James with Grace.  She wasn't at all what I pictured, but beautiful nonetheless.  Her hands and feet were so tiny and so beautifully formed.  Her cystic hygroma had just taken over the top of her body.  It was difficult to see that.  I could see her ears and her eyes.  Her ears were low set, like most Turner Syndrome girls are.  They were adorable.  We had four hours to hold her and love her.  They took her from me to weigh and measure her and to take her photo.  She measured 6 inches and 4 ounces.  So tiny, but my daughter.  The pictures of her are too difficult to share, but I will share a picture of her hand and then us holding her. 

I have to stop now, but I'll post more about our time with Grace later.  Thank you so much for your prayers and kind words.  We really appreciate it.

Monday, July 25, 2011

She's Gone

We went to the scan today at three.  I had a bad feeling leading up to leaving for the scan.  On the way there, I started to panic.  I guess it was written on my face, the nurse who did the scan hugged me as soon as I sat down my purse.  She started scanning me and stopped about three minutes in, said she needed to see the Dr.  I asked if she was gone. She said yes.  It hurt like nothing I've felt before and I've lost my father and a woman who meant the world to me.  I've known pain but I've never known pain like this. My daughter is gone. My fourth child is with those two people who mean so much to me and she is with my God. I would give anything to have been her mom here on Earth but that was not His plan.  As much as I want to be mad at Him because that is how I've been dealing with loss before now, I can't.  My heart is just broken.  I never did the research on miscarriage like I should have and I am going into this completely ignorant.  When we found out about her diagnosis, I made a choice to do whatever it took to give her a chance and some would say I took the harder option.  Now I was given the choice to bring her into this world the easy way by D&E, which includes dismembering my daughter OR doing it the hard way with full labor and delivery. This decision was made just as easily as the one before. I want to meet my daughter with her body as God intended.  So please pray that I am safe and there is no uterine rupture as this is an induced vbac.  Please pray we have the strength to face whatever happens tomorrow. I'm worried about what will happen but I have faith that Dr Duke will take great care of me. I've never heard of such a kind doctor like she is. Just three years ago she cried with me when we just couldn't conceive our third child and I wanted to be pregnant so badly. Today she cried because we had lost our fourth child. James found a funeral home that will cremate Gracelynn for us at no Charge. I had written out a list of local funeral homes and it was the first one he called. Newcomer Farley. Thank God that is one less thing to worry about. Thank you for your prayers and all the offer of help from family and friends. It means so much to us.

Sunday, July 24, 2011

Had a Scare

Okay.  For any family and friends reading this, I'm sorry I kept this information to myself.  I just hate being looked at and felt sorry for and didn't want to talk about it.  Yesterday I threw a graduation party for James.  I can admit now that I went a little overboard.  I spent about 8 hours cooking and prepping on Friday.  Got up early on Saturday and did another 4 hours cooking.  The party went great. I was up most of the night with Addison so I was pretty exhausted.  I tried to just smile and put it off.  Towards the end of the party I started to feel like I had really pushed myself too hard.  After most people left, I used the rest room and found brown blood while wiping.  I am sorry if this is TMI, but this is what having a scare during pregnancy is all about.  I immediately freaked out a little.  Wiped until it was gone to see how bad it was.  I called into my OBs answering service.  An OB called right back.  Basically she said brown is old blood (I knew that) and that it could mean a few different things.  Ultimately it was either my cervix was opening and I was going into premature labor, OR it could be the result of James and I doing the deed earlier this week.  This was after we crossed a few other things off the list it could be.  I had no red spotting beforehand and I heard the baby's heartbeat the night before so it wasn't a miscarriage.  She said I could go to L&D, but there was nothing they could do for me.  I decided to just go home and rest.  After all, I'll see a Dr tomorrow (Monday) and they'll be able to see if my cervix is shortening and if the baby is fine.  I just felt the baby move just a second ago so I am confident she is alive and kicking.  I've also heard her heartbeat several times since getting home last night.  The brown stuff went on all night and there has been a bit today even though it is almost nothing now.

I've been feeling really sad and stressed out.  I don't want to lose her.  And even if I have to lose her, I'm not ready for that.  I need to carry her and get to know her more.  I just need to be her mommy for longer.  I'm not ready to have my fourth child and lay her to rest.  This stuff is really starting to get to me.  I feel like I am losing my mind. I have so much respect for these moms and dads carrying to term their babies who have no chance at life.  I don't know how they do it.  Me with my 1-2% odds,  and I'm barely holding on.  But my odds are better than what some have.  I just need Gracelynn in my life and my kiddos need her too.  James is so supportive and loving.  He came home last night and really stepped it up for me.  McDs breakfast this morning in bed.  Dishes and laundry done when I woke up from my nap.  He is amazing. He wants Gracelynn so badly too.  I wish I could promise him that I'll be able to carry his daughter and give birth to her alive.  

Tomorrow we will see her at three.  We are praying for everything this time, that we prayed for last time.  

  • Cystic Hygroma has shrunk or not gotten bigger.
  • Her hydrops is gone or hasn't gotten worse
  • She is measuring like she should
  • Plenty of Amniotic Fluid
  • We can get a good look at her tummy and see for sure the herniation is gone
  • She is moving around and her heartbeat is strong
Thank you all for taking the time to read my blog. I am able to see how many views this blog is receiving everyday and since I started writing it and it is mind blowing.  I appreciate you taking the time from your life to read my ramblings and praying for Gracelynn. I feel better almost as soon as I hit the publish post button and I can't say Thanks enough.

Tuesday, July 19, 2011

Planning

What a difference the planning is with a normal pregnancy and one like what we are dealing with.  When I had my other children, I had at least half their wardrobe, crib set and baby stuff picked out or bought after finding out their sex.  I want to pick out bedding for Gracelynn. I want to figure out what scripture or saying I will get to put over her crib.  I want to start buying those sweet newborn gowns.  What I wouldn't give to buy her a sweet little pettiromper off etsy.  Why aren't I buying all these things for her?  Because they would be HER things and if something happens to her, they will remain HER things and they will be kept by me forever.  It not that I wouldn't want things to remember her by, it's just that I am not sure I could deal with keeping a whole bunch of clothes, bedding and baby stuff of hers.  I have read that most parents in our situation, go and buy just a few really nice pieces to have in case she does pass away and then if she doesn't we would  have those special pieces for her when she arrives.  I am considering buying a sweet outfit and blanket in the next couple weeks for Grace.  Maybe having them embroidered.

So what are we planning, if we aren't planning the fun stuff?  This past week we have been deciding what we will do if Gracelynn doesn't make it  We have decided that we will have her cremated and hold onto her ashes.  I plan on getting cremated myself, so I feel fairly comfortable choosing that for her.  But mostly it is because I would want any of our children to be buried next to James and I.  We aren't in the position to buy multiple plots at this time, so burying her wouldn't work.  Then there is the worry about how will we afford it?  We are struggling already, but I have read that there are programs out there to help parents who lose their children.  So these are the kind of decisions we are making at this time.  I just don't want to be blindsided if she does pass away like they say she will.  I want James and I to be united on these decisions now to alleviate the pain or stress later.  It's just not fair.  It's really not.  Sometimes I feel like I can't handle having to think about this stuff.  I knew it was in our future when we decided we just couldn't terminate any pregnancy, lethal genetic condition or not.  I just didn't realize it would hurt so badly.  I didn't realize the days would just drag on.

We get to see Miss Grace next Tuesday.  I am so afraid of what we will see.  Will her hydrops have gotten worse?  Will she be measuring small?  Is all my constant hydration helping her or will she have low amniotic fluid?  I am just terrified.  As the weeks go on, I love her more.  It's one of those things, you don't believe until you live it.  You think you love your husband or your children and you couldn't possibly love them anymore than you do now.  And then 5 or 10 years pass by and you know that there isn't anything you wouldn't do for them including lay down your life to save them.  I want to be her mom so much it hurts.  I would do anything to raise her alongside my other children.  She is a Burke.  So keep praying for my baby girl, please.  I appreciate it.  I really do.  It's all we can do for her and it means the world to me.

Saturday, July 16, 2011

Having some Assurance

Here is what happened.  On Monday night, a really bad storm came through.  When I say bad, I mean like branches breaking off in the road, trash cans flying out in front of you and buckets of water pouring out of the sky.  I picked the kiddos up from VBS and went to bring home one of Lily's friends that had went with her to church that night.  I was driving north on Brandt and almost ran over (into) a small tree in my lane.  I was able to get over without having an accident.  I decided that I would just pull into McDonalds right there and pull the small tree out of the road to help others.  It didn't look heavy at all.  As I started to pull it up on the curb, I realized it was heavy and I would have really messed my car up if I had hit it.  And then I realized how stupid it was for me to be pulling this heavy tree up.  I've always been careful during my pregnancies, but I've been known to move small furniture around on my own.  I immediately got really upset and mad at myself.  This pregnancy is different than my others.  This baby is fighting for her life.  I told James what I had done as soon as I got home and he tried to reassure me that she was fine.  The next day was nerve wracking and upsetting.  I thought for sure she had passed or I had hurt her. I spent most of the day in a panic.  I ended up getting pretty freaked out and told James he was either going out and buying me a doppler that evening or he was taking me to the hospital to see if they could find a heartbeat.  He got online and ordered a fetal doppler that night.  He paid extra for two day air, but it came on Wednesday in just under 16 hours.  We heard her heartbeat immediately.  165pbm.  I've been able to hear her heartbeat a few times a day since then.  It's such an assurance.  I can't even begin to describe how it feels to go about your day wondering if you are carrying a baby that has passed.  I do feel her kicking, but it is random.  I will be 18 weeks on Tuesday.  I am relieved to be another week farther along, but until I get to 26 or 27 weeks, I won't feel any kind of relief.

Sunday, July 10, 2011

I will carry You

Well.  This weekend wasn't easy.  I'm just feeling kind of panicky and upset.  I've tried keeping my mind off of the unknown future of our child, Gracelynn. But, it's starting to get to me five weeks after finding out something was wrong.  I'm exhausted.  I'm either up all night reading blogs and posts and trying to figure out what our odds are.  Or.  I'm having nightmares and strange dreams about what is going on in our life right now.  I can't sleep and even when I am sleeping it isn't restful.  I feel like I am just totally focused on how I am feeling and whether or not Gracelynn will make it.  There just doesn't seem to be room in my heart for anything else.  And of course that makes me feel like crap.  I have four other people who need me focused on them.

I ordered a book today called I Will Carry You by Angie Smith.  It's 12:30 at night and I've watched about a million youtube videos this evening about Angie Smith and her husband and their experience with the fatal diagnosis of their fourth child who just happens to also be a girl.  I am in wonder of this woman, to put it lightly.  I wish I had her grace and resolve to just trust.  I am having such a hard time trusting right now, right this second.  I am finally headed to bed to hopefully get some sleep but I just had to share this video of the song Angie and her husband wrote for their daughter, Audrey.  It's so beautiful.  My favorite part was "I will praise the one whose chosen me to carry you."  I know I should praise HIM in this storm, but my heart is just so heavy today.  So heavy.  I'm going to pray for more strength tonight and see what tomorrow brings.

(you'll have to copy and paste the link...sorry.)

http://www.youtube.com/watch?v=J2CnUtVY35o

Tuesday, July 5, 2011

Ultrasound Update

We had our ultrasound this morning.   The scan took about an hour.  The nurse went over everything twice it seemed.  We didn't get the worst news, but it could have been better of course. Her cystic hygroma is 17mm.  A growth of 8 mm in 4 weeks.  The Dr seemed unconcerned about the CH.  He said he sees babies with large CHs and they just disappear later on in the pregnancy.  They believe that her omphalocele is not there or if it is, it is minor.  Miss Gracie wouldn't take her hands away from her umbilical area so it was hard to get a good look.  Her heartbeat was 170 bpm.  They referred to her as a strong baby.  She was moving and even stretched out for us.  The tears came after witnessing that.  She did have some fluid in her abdomen, but not a large amount.  When they measured her abdomen, I saw that she came up with it being the size of 18weeks.  I'm 16 weeks. He did say it was technically Hydrops, but it wasn't a severe case.
 
The Dr came in after the scan to talk about the measurements.  I did get a little loud with the Dr at one point.  I couldn't help myself.  I got kind of loud with him because he mentioned talking to a genetic counselor.  I couldn't help but feel like I didn't need one because I know what the dx means and I don't want to talk about termination.  I just had to be sure he understood we were moving on with our pregnancy no matter what these ultrasounds came up with.  He seemed to think maybe I was online reading stories of girls with mosaic Turner Syndrome and not stories of girls with Monosomy X.  It just pissed me off because everyone in the office has referred to it as Turner Syndrome, so that is why I refer to it that way.  I understand that she has full Monosomy X and has the least chance of making it to term.  But it is Turner Sydrome.  I told him I would be happy to see the genetic counselor if he thought it would help us.  He made it clear that our odds of Gracelynn making it to term are very, very low.  I'm hoping from here on out, he understands that I don't need to be reminded.  I know what our odds are and I would like to be optimistic about everything.  


He did upset me a bit too when he asked how many other children we had.  He asked their ages.  He said something to the effect that he thinks we are going through something very stressful and he couldn't imagine having to deal with what we are dealing with in addition to having to deal with our other children not understanding what is going on.  He kind of looked at me like he pitied me.  It was that moment there that made me realize just why I don't want everyone we know to know our struggles.  I don't want pity.  I don't want people to feel sorry for us.  James and I feel blessed to have this child.  Sure our hearts hurt and we are more than a little stressed, but this baby is a miracle and we were chosen to be this miracle's parents. 

We ended up seeing a genetic counselor and spoke to her for about an hour or so.  She was very kind and optimistic.  She took a detailed health history of our our kids, our brothers and sisters, our nieces and nephews and our parents.  She asked how much our kids weighed at birth and when they came during the pregnancy.  She did speak about TS to us for a little bit but she couldn't really give us any information we didn't already have.  She said she would look into what kind of pediatrician we would need for her if she makes it to term.  She is sending me a bunch of information in the mail as well. She apologized that I had to find all my information about TS by myself.  They all seemed kind of surprised that James and I knew all that we did.  I did find out that we will need to look at Gracelynn's heart at about 22-24 weeks and we could do that there or we might have to go to Children's.  This fits with what I have read from other TS moms.  We also talked about where Gracelynn would have her heart surgeries if she needed them.  I was more than a little disappointed to find out that those surgeries are done at Cincinnati Children's Hospital.   How can I see my newborn everyday AND take care of my other three children at the same time?

I've already considered the financial burden repeatedly driving down to Cincinnati and staying in the Ronald McDonald House will put on us.  December is already a tough month for us.  I feel like warning our family now that if our prayers are answered, we won't be able to afford Christmas this year.  Of course that is a long way off for us.

Monday, July 4, 2011

Prayer

We have an appointment tomorrow morning at 10 am with Perinatal Partners to have an ultrasound and see how Gracelynn is doing.  I need prayer.  I know that when I pray for her, it helps so much.  But I can feel in my heart that I need others to pray for us as well.  I am having a really hard deciding if I should be telling everyone I know that our baby needs prayer.  I just can't stand the thought of people knowing the struggles we are facing.  But on the other hand, I feel like prayer will lift my heart and help Gracie so much.  I'm going to spend the next week really trying to figure this out.  So these are the things that we would like to see for Gracelynn specifically tomorrow.
  • Gracelynn is alive and kicking and thriving.  I have felt her kick yesterday and today for sure so I have great HOPE that she is still alive.
  • We would love to see that Gracelynn's cystic hygroma has shrunk or at the very least, not gotten bigger.
  • We are also hoping that her omphalocele (herniated intestine) has moved to where it should be and that the initial Dr was wrong to assume it was even a true omphalocele.  She was so quick to diagnose a fatal chromosomal anomoly.
  • We are praying that Gracie has not developed hydrops.  This can be lethal. It would indicate that she isn't processing the fluid in her body correctly.
  I will update tomorrow with what we see.  I appreciate every prayer said for our daughter.  We can't get through this without the love and support of our family and friends.  Thank you from the bottom of my heart!!

Friday, July 1, 2011

Helpless

So today I am feeling kind of HELPLESS when it comes to the baby.  I feel like I am just waiting around for something bad to happen and I can't focus on what is going on in our lives when it comes to NOT worrying about the baby.  I feel like I can't make even one decision for my family at this point.  I can't plan out meals.  I never went and bought the kids anything to wear on the 4th of July.  I can't even push myself to work on my Scentsy business.  I start back to school this Wednesday and I am really worried that I'll be too distracted to do it.  I need to plan a graduation party for James and I am totally confused about what the first thing is that I need to do.  I picked a date, what's next?  I think I am just too worried, too tired and too stressed out to be the mother, wife and friend I need to be.  I am not sleeping at night and I think that is part of my problem.  I have 4 or 5 dreams a night about Gracelynn.  Last night I dreamed she passed away at 24 weeks.  I can only remember bits and pieces from the other dreams.  

Well, I will get to see the baby on July 5th.  We have an ultrasound scheduled with the peri Dr that did my CVS.  The nurses will go through and measure Gracelynn again and just look her over more thoroughly.  We are hoping that her cystic hygroma has shrank or at least not gotten bigger.  You can see it on her 12 week U/S photo.  It was 9mm in that photo.  Normal would have been anything under 3mm.  We are hoping there isn't an issue with her intestines, that they just hadn't had a chance to move where they needed to be yet.  We are also hoping that she doesn't have hydrops.  I have been drinking water like crazy, hoping to help her with her being able to process fluid better.  I have done a lot of research with other moms and I have read that TS girls have issues processing their fluid and that is why they have cystic hygromas, hydrops and low amniotic fluid.  I have read stories from women whose baby's hydrops or CH miraculously went away later in the pregnancy.  I have read stories where the TS girls doesn't make it.  But I have hope.  I am just hoping for good news on Tuesday.  I am afraid there will be no heartbeat and she will be gone, but I will have James there to lean on and we will get through it.  I just pray I will get to be her mama.  I'd love to hold her in my arms one day. 

Sunday, June 26, 2011

Each Day is a Victory

I am 14 weeks and 5 days pregnant today.  I am carrying a baby that I have been told repeatedly will not make it.  And yet, I've had almost 15 weeks of  being blessed to be her mama and carry her.  I think about the months I have ahead of me and it seems like such a long journey for a baby who doctors and nurses think won't make it.  I count the days left, and there are so many.  Today I started to think, maybe I am going about this wrong.  Maybe I should just pray for her to make it at least one more day.  One day isn't so much to pray for, is it?  I'm not asking for too much, am I?  Each and every day I have with Gracelynn is a victory.  I want to be her mama and hold her in my arms with all my heart.  It hurts like a pain I have never felt before to think that she won't make it.  I'm going to sleep now and will ask God to let me carry Gracelynn at least one more day.  Tomorrow night, I will ask again.