It's not about what God has done to me, but what he has done for Adam...

Tuesday, December 29, 2009


And here is Adam's stocking and pin wheel.
Here is all of Adam's Christmas decorations. It's nice to go there and find "surprise" decorations that I don't know where they came from. Just shows that he has lots of people that care about him.

This is the ornament we hung on the Funeral Home's memory tree. Every year they have a candle lighting ceremony and families come and hang ornaments on one of their Christmas Trees. I love this pic of Adam.

Here is Adam's permanent headstone. Not sure how big it's going to post, so on the left it shows hands and says, "In God's care" and on the right is a teddy bear.

Made it through, the New Year

So I made it through my first Christmas without Adam. Christmas morning was a lot harder than I thought it was going to be. I was so excited to see Allison open all her presents and "read" the note Santa left for her. But when it was all done, I still felt like something was missing. And there was. Adam. I know 2 mth olds aren't too exciting during Christmas, but I would have loved to have him sitting in his bouncer by the tree watching his big sister open her presents, learning how to do it next year. Instead, I guess he was watching from Heaven.

I decided to make Adam his own stocking, with his name written on it in blue. Allison had one of her own, with her name in her favorite color, purple. I explained to Allison that Santa was going to put presents in her stocking for her and she was upset when I told her that Santa wasn't going to be bringing Adam anything. We had been wanting to find a pin wheel to put at the cemetery for Adam. The little boy next to him has one and it just brings a little life to the area. So I decided that Santa would bring one for Adam, I went to the store and couldn't find any at first, then there was one lonely pin wheel waiting for me a the end of the aisle. I got it and put it in Adam's stocking and let Allison find it for him on Christmas morning.

Before we went to eat dinner with Steve's family, we stopped at the cemetery to visit Adam and put the pin wheel there. My heart was aching to hold him so much that day and then what Allison did made it much worse. While we were there, she kept looking at the ornament on Adam's tree that had his picture on it. I thought that was cute. Then she said she was ready to go and went over to the tree and hugged it, walked away and started waving "goodbye". I had tried really hard not to cry that day because I didn't want to ruin her Christmas, but after she did that I really couldn't hold it in any longer. She would have been such a good big sister to him. I really wish she had that opportunity.

When we were at dinner with Steve's family, my niece was there. She was born one week before Adam. The last time I saw her I fell apart and really was worried that it was going to happen again. But it didn't. I was actually ok seeing her. It did hurt a little, but it was nothing that I couldn't handle. I don't think I am up to spending lots of time around her yet, but someday I will. I am just happy that she is so young because I would hate for her to think her aunt hates her. When she gets older to actually "know" me, I should be better to actually interact with her and maybe even hold her.

Now I have to try to get through the New Year. I think this might be difficult for me. I know logically it makes no sense, but I feel like by moving into 2010, I am leaving Adam behind. I don't want to move on without him. I am sure that after a few weeks into the New Year, I will get over it and just realize that nothing is really different except the date, but for now its just something else for me to deal with.

Since Christmas is over, this coming weekend, we will go to the cemetery and take all of the Christmas stuff down. I don't like to think that Adam won't have decorations there for him. I have decided to change out his decorations each month, to keep everything fresh and new. For January, I am just going with a winter theme. I bought a little snow man and snow flakes. I often feel the need just to go there and visit him, although I don't get to go as much as I would like. I know he's not really there. But by decorating for him and going there and making sure things are kept nice, it's my way of taking care of him. Its the only way I can "take care of him". It may seem silly to some but to me it's a way to still feel like I am Adam's mommy.

And a couple weeks ago, Adam's permanent marker came in. I will post pictures of that and a few Christmas pictures in another post. I am so bad at adding pictures and text in the same post...

Saturday, December 19, 2009

My First Christmas with Jesus

I see the countless Christmas tree around the world below,
With tiny lights like Heaven's stars, reflecting on the snow ,
The sight is so spectacular; please wipe away that tear,
For I am spending Christmas with Jesus Christ this year!

I hear the many Christmas songs that people hold so dear,
But the sound of music can't compare with the Heaven's choir up here.
I have no words to tell you the joy their voices bring,
For it's far beyond description just to hear the Angels sing!

I know how much you miss me, I see the pain inside your heart,
But I'm not so very far away; we're really not apart
So be happy for me, dear ones, you know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year!

I send you each a special gift from my heavenly home above.
I send you each a memory of my undying love!
After all, more precious than pure gold,
Love was always more important in the stories Jesus told.

Please love and keep eachother as my Father said to do,
For I can't count the blessings or the love He has for you!
So have a Merry Christmas, and wipe away that tear,
Remember, I am spending Chistmas
.....with Jesus Christ this year!

Author Unknown

Thursday, December 17, 2009

Peace and Shooting Stars

Steve and I went on a cruise last week. It happened to fall on our anniversary, but we took it just to try to get away for awhile. I think it really did me some good because I am starting to feel like a new person. I still miss Adam so much and the pain is still there. I can actually feel the ache in my heart and the knot in my throat doesn't seem to go away. But I have found some sort of peace. Maybe I am starting to reach the grieving stage of acceptance. Maybe I am numb to my sadness, I really don't know. I am not as angry as I was. I have much more patience with Allison. Missing her made me realize how much of a miracle she really is. Maybe Steve and I aren't genetically compatible to have healthy children. Maybe she is our miracle child. It has been so hard losing Adam but it would be 1000 times harder if I didn't have Allison. I really thank God for giving me her before any of the miscarriages and before having Adam. She makes my life worthwhile and gives me a reason to keep going.

I had to buy Allison souvenirs from each of the ports we went to, just something small. It was really hard for me not to want to buy something for Adam too. It seems silly because he can't have anything I buy him, I would just keep it at home or bring it to the cemetery, but I feel like I want to, not have to, but want to buy stuff for him. Maybe I will get over this eventually, and maybe not. It just feels weird not to include one of my children in all aspects of my life.

On the cruise, we had a balcony cabin. We spent the last night of the cruise relaxing out there and enjoying the night breeze. As I was looking up to the stars, I asked God to just show me a shooting star to let me know that Adam was ok. I waited a few minutes and nothing. I figured God wasn't going to give me any kind of sign that Adam was alright because I should just have faith that he was. Then suddenly, I saw it. A shooting star! Steve didn't see it, but I told him that I saw a shooting star and that I had asked God to show it to me. I could tell that he was upset because he had missed it so I asked God to show him one too. Almost as soon as I finished that prayer, Steve said that he just saw one too. Then we just sat there staring at the stars thinking of our little boy. I know Adam was looking down on us from Heaven smiling and knowing how much his parents love him. I know there will be some critics saying that the shooting stars were just a coincidence. And maybe they were. But it gives me peace to think that they were God and Adam's way of telling me to go on with my life that Adam is happier in Heaven than he would be on Earth. Now I think of Adam as my "Little Star"...

Tuesday, December 8, 2009

Adam is certainly a part of our Christmas!

Adam may be celebrating Jesus' birthday in Heaven, but we are making him a big part of our Christmas celebration here on Earth. I wanted to post a few things that we are doing to make sure Adam is remembered Christmas this year, as well as many years to come. I haven't posted pictures on here during a post before and am getting pretty frustrated, so they are in a little different order than I wanted them to be, but after 4 tries, I give up.

The first picture is of a Santa ornament that lights up and says Adam at the bottom. It is a little blurry, I think maybe because of the tree lights, but its the best one I got.

Every year we get Allison an ornament that has a current picture of her in it and I couldn't leave Adam out this year! Here is his picture ornament. It was hard finding an ornament that didn't say "Baby's First Christmas" on it. I just didn't feel like it was appropriate since he's not here for Christmas. I think I went to every store in town looking for the perfect ornament for him, and loved this one as soon as I found it at the Shell Factory.
Just a glimpse at his grave site with his Christmas trees, temporary name marker, flowers and cookie monster. His permanent gravestone should be in anytime and as soon as it gets in, I want to laminate a picture of him and tape/glue/somehow stick it there so everyone can see how beautiful my little boy was!
Here is a picture of the little Christmas tree my parents got for him. We bought little ornaments and Allison helped us decorate it. When I went back yesterday to take pictures, Allison was so cute and excited to go, she even waved and said goodbye to the tree when we left. She is so relaxed at the cemetery. She was trying to fix all the broken things that people put there for their babies and put back any flowers that had blown out of the vases. I hope she always feels comfortable to come visit her brother. Oh, and putting beaded garland on a tiny tree is next to impossible, but I did my best.

Here is something that Adam's Grandpa Charlie made for him and placed it on the gravesite. I am not sure what it is called, but it is made out of the extra leaves/branches from Christmas trees. It is really cute! I think Allison wanted to steal the Mickey Mouse ornament that was on it.

I also got a little ornament for Adam's twin to put on the tree, but since I am having trouble getting the pictures on here, I will have to post it when I figure it out. Lately I have been thinking a lot about that baby. Was it a boy or a girl? I think girl. And so far I am 2/2 on guessing the sexes of my babies. And what would he/she have looked like? Probably a lot like Adam. They were fraternal so I am sure they wouldn't look exactly alike. I remember when I lost that baby, a part of me didn't think I would ever be able to look at Adam without hurting because I would always know he was supposed to be a twin. Now, 9 mths later, I sit here with no babies. But they are together in Heaven with the other 2 babies that I miscarried and will one day get to play with their big sister Allison.

Thursday, December 3, 2009

One month

Today is one month since Adam left us. One month since my life changed forever. I am not the same person as I was before we got that phone call the morning of Nov. 3rd. I am not the person I want to be. I am unhappy, sad, angry, impatient, irritable. I hate being in crowds. I don't like talking to people. When I go out in public, it just reminds me that the world is continuing and I want it to stop. I just want it all to stop until I am able to continue with my life. But I don't know if I am ever going to feel ready to continue with my life. I really can't go anywhere or do anything without crying. I cry in Wal-Mart when I see the baby section, I cried at my niece's Thanksgiving performance just because there were so many happy people there and I wanted to be happy but couldn't, I cried the other night before dinner because the meal we were having was high carb and for a sec I thought I should be checking my blood sugar like I did when I was pregnant, I cry all the time in the car because Allison constantly wants to listen to the "Jesus song"- the song we played at Adam's funeral, I cry at the thought of going back to work and being among people again. How am I ever going to hold it together for a whole work day. I have several job interviews next week. How am I going to get through a whole interview without crying and telling them not to hire me because I don't think I can actually go through with it.

I have to try to go on and stop crying for Allison. She sees me cry and asks me why I am crying while grabbing a tissue to wipe my tears. I know she feels my sadness too, whenever I start to get upset, even if she can't see me or I try my best to hide it, her mood changes too. She has been very clingy lately. I can't leave her sight without her looking or crying for me. She won't eat very often unless I feed her. Its like she's reverting back to being a baby. She always "carries" around Adam and talks about him often. I just wish I knew what was going through her head. I have to try to pull myself together for her.

I have read quite a few blogs of other woman who have gone through losing a child and I really am not hopeful that I am going to be feeling better any time soon. From what I have read, the pain will stay the same, but I will one day learn to go on and be able to live my life with this pain. I know Adam wouldn't want me to stop living because he is not here. I have to keep going, find someway to make his life meaningful, not just to me, but to others who go through the same thing. I wish I could help other families who will face this situation. Maybe a book (good idea, Hollie). But in order to do anything like this, I need to get me better. I have decided, or more it was decided for me by Steve, that I need to talk to someone to help me sort out these feelings and make sense of what has happened.

Another thing I have read in others blogs, is how to deal with the question, "How many children do you have?". Some have said that they will go with the simple answer and just admit to the living children they have to avoid the complicated answer of what happened to their baby or to avoid making the person asking the question feel uncomfortable. I have decided, that no matter how uncomfortable it may feel, I cannot deny that Adam is my son! It may make the other person feel bad for a short time, but it would make me feel bad for a lot longer if I said that I only have 1 child and not acknowledge Adam's life.

Here is a poem I found another a blogger friend, Lisette's, website. Lisette lost her daughter, Sami, about a week before Adam. I'm sure these 2 babies are playing together in Heaven!

A pair of shoes
I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. They are looks of sympathy. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women are like me and ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I will forever walk in the shoes of a woman who has lost a child.
Author Unknown.

Sunday, November 22, 2009

I wish....I'm happy that...

I wish... in no particular order, just random thoughts...

I wish that Adam was alive and healthy.
I wish Allison got to be a big sister.
I wish I could have 2 children ( seriously, some people get 19 and I can't have 2?)
I wish I was as strong as people said I was.
I wish a piece of my heart wasn't missing.
I wish I had more patience with Allison lately.
I wish Allison's hugs made me feel better like they used to.
I wish I didn't feel so disconnected from my daughter.
I wish Allison didn't have to pretend to play with her brother.
I wish it didn't break my heart every time she pretended she was holding him.
I wish a part of me didn't want to pretend right along with her.
I wish I could fast forward past Thanksgiving, Christmas and New Year's this year.
I wish I didn't have to go back to work, EVER!
I wish I could just win the lottery and stay home try to be the best mommy ever to Allison!
I wish the CDU was still the CDU so I could go "home" and work where I was comfortable with people that really care about me instead of finding a new job with strangers who know nothing about me.
I wish I had it in me to be an ER nurse so I could still work with those people.
I wish there was something that could take my pain away.
I wish I could stay in a drunk oblivious state all the time. ( But I am NEVER in this state)
I wish I would have smiled for just one picture of me and Adam.
I wish I could have just one picture of Allison holding Adam.
I wish I could have at least one picture of me, Allison and Adam.
I wish I could go get a new "Family Picture" without feeling like it was wrong because Adam wasn't there.
I wish I didn't get insanely jealous/ upset/ angry when I see a pregnant woman or someone with a very young baby.
I wish I knew why we prayed if God is going to do what he wants to do anyway....
I wish my cruise left sooner...I needed to get away, like, yesterday.
I wish Steve would put the toilet paper on the roller, the "right way", AKA "MY WAY".
I wish I wasn't so angry all the time.
I wish I could be happy, really truly happy again.
I wish I could eat the foods that I ate a lot while I was pregnant without crying.
I wish I would have spent more time in the NICU with Adam.
I wish God would've just given me a miracle!
I wish my c-section incision would stop hurting already.
I wish I wasn't such a mess that I could be a better wife to Steve.
I wish my sister, Heather, lived closer.
I wish I was more motivated to care about cleaning, cooking and taking care of my family.
I wish I could figure out where to find graphics to put on the blog...saw some on another blog that I really like, but can't find the link for them anywhere!
I wish I didn't feel like a pregnancy many times have I been pregnant, how many kids do I have?? ( I have more babies in Heaven than I do on Earth)
I wish I wasn't so selfish that I would rather have Adam here with me than healed in Heaven.
I wish I could just hold Adam one more time.
I wish I could say that it didn't cross my mind, for a very brief second, while visiting his grave to dig him up just to hold him again (yeah, I know, very very bad idea, but a grieving mother doesn't have too many good ideas)
I wish I knew how to deal with all of this...

I'm happy that...

I'm happy that I got to be pregnant with Adam for 35 weeks!

I'm happy that I got to feel his kicks, hiccups and bond with him while he was growing.

I'm happy that I got to spend 4 days with Adam while he was alive.

I'm happy that I went the night before Adam died and said "Goodnight".

I'm happy that I have family and friends that are trying to help me through this.

I'm happy that I had a wonderful photographer that took beautiful pictures of my baby boy.

I'm happy that Adam is not suffering at all anymore!

I'm happy that Steve's work gave him the days off to go on the cruise.

I'm happy that we had enough Seamiles Points to take a free cruise.

I'm happy that Allison is a wonderful, caring person. I am lucky to have her as my daughter.

I'm happy that Steve is still putting up with me after almost 4 years of marriage.

I'm happy that listening to Linkin Park and breaking plates allows me to get out some of my anger.

I'm happy that I won a trip to Disney last year and can't wait to take Allison for her birthday.

I'm happy that I started this blog to get out all of my feelings!

Sunday, November 15, 2009


Its been a week since I last posted and I would like to tell everyone that I am doing so much better and am moving on just fine. But that is not the case. Maybe I am doing a little better, I am not crying as often, but I think that's because I am just sick of crying! I have good hours and bad hours. But the pain is still there so much and I just don't know how to make it stop!

I know I will always love Adam and miss him, but I want to enjoy life again. We have been trying to take Allison to do a lot lately, trying to distract all of us from this, but even when I start to feel "happy", its not "real happiness". Deep down I am crying and screaming and angry and think that life is not fair at all! Why do people who do drugs throughout their pregnancies end up with healthy babies? Why do people abort completely healthy babies every day because they don't want them and I desperately wanted Adam and I can't have him?? It's just not fair!

I have a niece who was born 1 week before Adam. I tried to be strong and see her yesterday, I thought I could do it. Instead, I couldn't even look at her without falling apart inside! Allison was very interested in her and it just hurt so bad. She should be able to be a big sister to her little brother. I should be able to be a mother to my son. Instead I am left with this pain, a piece of me is gone and I can't get it back. My heart continuously aches for Adam. My arms ache to hold him. I just wish I could make sense out of all of this!

There are 2 things that have brought me comfort lately. The first is the pictures that the photographer, Stephanie from Angel's Touch Photography took of Adam. I think I get on her website several times a day to see pictures of my baby. Seeing him just makes me feel better. The only thing I regret, is that Allison was so sick the day he died, that I was unable to get any pictures of her holding him. And that makes me wonder, why did God allow her to get sick that day? He knew that he was taking Adam home and how important it was for me to have pictures of my 2 children together, and yet he allowed her to get sick. While I am upset about this, I do have the pictures of me and Steve with Adam and I am forever thankful to Stephanie for doing this for me. The pictures we took don't even compare to the beauty of the ones she did for us.

Another thing that brings me comfort is a song by MercyMe called Homesick. Actually, I heard it one a slide show Stephanie made of the pictures she took for us and I immediately was able to relate to it. Here are the lyrics:

You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

In Christ, there are no goodbyes
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow

I've never been more homesick than now

The song really just puts into words how I am feeling. I know Adam is much better off in Heaven than here on Earth and I am so happy for him. But it still hurts so bad. We did everything we could to try and save him. Even knowing that it didn't help, I would do it all over again if I had to! The dr bills keep coming in and its just another reminder that no matter how hard you try or how much you pray for something, if it's not what God wants, then you will not get your way. God knows whats best and someday he will tell me why this had to happen.

I am going to start seriously looking for a job this week. I should be released to go back to work in about a month and need to have something lined up. But I know I need something low stress. I cannot return to being an ER nurse right now. It is just too stressful and I think its going to be a long time before I am able to think clearly and don't want to kill anyone.

We have a free cruise from points from a credit card and really want to take it before I go back to work. I need to get away and relax. Everywhere we go around here, I have a memory of being pregnant with Adam and it just brings back all the pain of knowing that he was alive inside of me and now he's not. We never went on a cruise when was pregnant, so hopefully we will be able to escape too many painful memories, even if for only a few days. As long as Steve's work lets him have a couple days off then we will be able to go in the beginning of December, probably around our anniversary.

Sorry, I feel like I have written a book.

Saturday, November 7, 2009

I miss my baby boy!

I have been meaning to get on and post about what happened with Adam but have had so many different emotions and thoughts that I couldn't even begin to know where to start. But I will do my best, it might be a little long and sometimes hard to follow, but that's how my mind works these days.

Monday, Nov 2, my sister, Heather, and Allison came up to St.Pete to spend some time with me and Steve. There was a little change in the weather and it made Allison start to wheeze and have a lot of breathing trouble. Heather and I decided to go find a store to buy her some medicine to hold her over until morning when my parents would come up and bring her nebulizer machine. While we were out at the store we decided to go and check on Adam. And I couldn't be happier that I did because this was the last time I would see him alive. He was doing pretty good. He was on a normal ventilator, his blood gases were good and his blood pressure was holding steady. I held his hand and told him that I loved him and would be back in the morning. Before I left, I reminded the nurse to call if anything happened. She seemed a little annoyed at this, but I didn't care. I wanted to make sure that she knew I was his caring mother and needed to know about any changes in his status.

The medicine we got for Allison didn't help her for very long. We were up all night with her moaning and whining because she was so miserable and couldn't breath. About 6:00 am I decided that she had suffered enough and we couldn't wait a couple more hours for my parents to get there with her nebulizer machine, so I took a shower and was going to take her to the ER. As I was about to get dressed, Steve's phone rang, it was the NICU. They asked how soon we could get there because they were doing chest compressions on Adam. I froze and didn't even know where to start. Allison couldn't breath and desperately needed to get to the ER but my baby boy needed me too. Heather had to tell me where my clothes were because my mind was not capable of working at that second. Steve hurried up and got dressed and we rushed out of the room, trusting that Heather would take care of Allison for us. I had been discharged from the hospital the day before so we had stayed the night at the Ronald McDonald House which was several blocks from the hospital. We didn't have time to get to the car and then find a parking spot in the parking garage so we ran as fast as we could to the hospital. Adrenaline must have really kicked in for me because I barely felt the pain, c-section stitches and all, I just knew I had to get to my son.

When we got to the NICU, I remember seeing a crash cart and lots of people standing around Adam. I just stopped and one of the nurses had to tell me that it was ok to go in. I looked at the monitor and saw that his heart rate was zero and was just in disbelief. What happened? He was doing ok 10 hrs earlier. They said that his heart just stopped and they couldn't do anything to get it started again. My baby boy was gone.

They brought us to a room where we could hold him and take pictures. We started calling our family to let them know what happened. At first I was ok holding him but as his color started to changed, it felt weird. Steve told me that if I didn't hold him more that I would regret it and I decided that he was probably right. It felt so nice to hold him in my arms. I wish we had stayed longer.

Before I had Adam I had contacted a photographer with an organization called "Now I Lay Me Down To Sleep". They take pictures free of charge for families whose babies have a poor prognosis. Heather had contacted her when Adam was born but I was holding out on her coming, hoping that we would be able to get pictures when he didn't have the breathing tube in and we could hold him. I am really happy I decided to wait because she came that morning and took the most beautiful pictures of my baby. This is how I want to remember him, as beautiful, not with tubes everywhere and with all the swelling that he had .

While we were in with Adam, Heather was in the ER with Allison. The chaplain went over to the ER and spoke with them to expedite the process so that Allison could come over and meet her brother. After she got her breathing treatment in the ER, she was feeling a little better and did very well with Adam. She didn't understand what happened and I'm pretty sure she just thought he was sleeping. By the time the photographer got there, her breathing was pretty bad again and she did not want much part of the pictures. We were able to get a few with her in them, but we never got one of her holding him.

Since I was 17 weeks pregnant, we knew this was a possibility, but I never knew how bad it would hurt to lose him. Yes, I bonded with Adam while I was pregnant. I miss his hiccups and feeling his feet kick me so hard that it hurt. But when I really bonded with him was the first time I was able to hold his little hand. I automatically felt the connection. I never got to hear him cry, see him move or open his eyes. I wish I had, but the only way that would've happened is if we took him off all life support and let him go. I didn't want to give up on him. I knew God was going to tell me when it was his time, and he did. The morning that Adam passed, the neonatologist basically told us that the nephrologist was going to tell us that he would not attempt to place a dialysis shunt and Adam would die anyway, but it could have been days until that happened and we would've just been waiting around for the phone call. This way, God took that pain of waiting away from us and took Adam very quickly. I am thankful that I never had to make the decision to remove the ventilator or take him off any of the medications that were keeping him alive.

Today was Adam's funeral. It was hard, but I made it through. The baby in the casket did not look like my baby. This is not how I want to remember Adam. He was so much cuter than he looked today. Allison was so good today. I think she is starting to understand what happened to Adam. It was really good for her to be there. We put a little cross and a crystal heart in with him and she kept moving them from one hand to the other every time she would go see him and say that he was going to bring them to Heaven and give them to Jesus when he got there. We couldn't keep her away from him. She kept hugging him and kissing him and saying how cute he was. I loved seeing how good she was with him and about the whole thing, but it really broke my heart to see how good a big sister she would've been and now she'll never have that chance.

I hope that nobody reading this ever has to go through losing a child because it is the hardest thing in the world! I am finding it hard to just live. I don't feel like doing the basic things in life. If it wasn't for Allison I would probably just self medicate with benadryl and never get out of bed. But I have to take care of her. Sometimes she has to remind me that she's hungry and then I feed her, but she's not starving. She might stay in a wet diaper a little longer than usual, but I think she will survive. Potty training is over for now. It is the farthest thing on my mind right now. I know eventually I will have to go back to work, but I don't know how to even think about that. I don't even want to be a nurse anymore. I just think it will hurt to much to be in a hospital setting. People keep telling me how strong I am. Well, I don't feel very strong at all. I am a mess. This post cannot even begin to describe how I feel. I know this was what is best for Adam and when I remember that I do feel a little better. But I also feel like this could have been my fault. I had 2 xrays while I was pregnant, I just finished an antibiotic right before I got pregnant, I had to take prednisone for a few weeks because of my asthma. All the dr's say "no", but I will always feel like maybe I did this.

I will never forget Adam. He will always be a part of me and my family. I will not pretend that he didn't happen and not talk about him. I will proudly mention my baby boy and hang his pictures in my house. He was my son and I will always love him. I want to thank everyone for their support and prayers during this hard time. I really appreciate everything.

Tuesday, November 3, 2009

Adam Stephen 10/30/09- 11/03/09

God decided to take Adam home with him early this morning. Right now I am just trying to figure out how to take care of myself and Allison. We have a meeting with the funeral home in the morning. I will try to get on tmrw and post more details and pictures of my beautiful baby boy. I know he is better off now, but my heart feels like it has been taken out of my chest.

Saturday, October 31, 2009

Adam decided to make an early appearance!

Adam was born Oct.30, 2009 at 9:23 am weighing 4 lbs 8.5 oz and 16 inches long.

Thursday morning, Oct 29th,I woke up at about 4 am feeling very uncomfortable and having pretty bad lower abdominal pains. I had plans to go stand in line to get my h1n1 vaccine and really wanted to get it so that Adam would be protected by getting my antibodies so I tried to ignore the pain. At first I didn't think it was contractions but then I noticed that the pain was coming in a pattern. I waited in line for 2 hrs so that me and Allison could get our shots but then I was in quite a bit of pain and knew that I needed to go to the Dr.

Steve left work, we dropped Allison off to my parents then we headed to my Ob. He checked me and I was 2 cm dilated, which was a change from how dilated I was on Monday and was contracting every 2-3 minutes. So he sent me to the hospital to get admitted and eventually transferred to St.Pete. At the hospital they started me on IV Magnesium to try and stop the contractions. No such luck.

Then they set up the transfer to St.Pete. The helicopter came and got me and in a short time I was at the new hospital, all alone and in lots of pain. Steve hurried up and packed and headed up with my parents and sister not too far behind. At the new hospital they stopped the IV Magnesium and started me on Procardia and then terbutaline to try and stop the contractions that were coming every 3-5 mninutes. The procardia didn't do anthing at all. The terbutaline did seem to space the conractions out, but only made the ones that I did have that much stronger. So I continued to have the contractions all night but about 7 am the nurse decided to check me again before giving me more medications to try and stop the labor and I was already dilated to 6cm. Since Adam was breech and it was becoming obvious that nothing that they were doing was going to keep him from coming, they decided to do a stat c-section. As nervous as I was to have my baby born at 35 weeks I was ready to have the pain over with. All night they wouldn't give me anything for the pain because they didn't know when I was going to have to deliver.

So I got the spinal, which luckily worked on both sides of my body unlike the epidural I had with Allison. And they prepped me for surgery. Steve was right next to me the entire time. When Adam was finally out, I waited and waited to hear him cry, but the cry never came. They worked on him for probably about 30 minutes and then told us that they had to intubate him because his lungs seemed really stiff and under developed. This was one of the things that we had hoped and prayed would not happen.

Everything from yesterday after the c-section is a big blur from the pain meds and just the trauma of the whole ordeal. I was napping in the room when Steve called and said that I needed to try to get down there soon to see Adam because it wasn't looking very good. Originaly the nurse had said that maybe after dinner they would get me up to go see him but I told them that I really needed to get down there now. They hesitated by finally said I could go as long as I had family with me and I didn't get out of the wheelchair.

They had to put Adam on a high velocity ventilator with nitrous oxide for his breathing and several medications for his blood pressure because it was dangerously low. Then they ran lots of tests and the prognosis was pretty bad. We were told that he had no kidney function and dialysis would be very difficult. The news wasn't good but it was what we expected.

This morning when we went to visit Adam the nurse practioner came to us and told us that they had found that Adam didn't have any kidney tissue left and dialysis wasn't an option, that he would sooner than later, die of the build up of toxins. Devasted we began talking over our options of whether to take him off the ventilator so that we could spend some time with him before died from the toxin build up or keep him on the ventilator and just allow him to go peacefully in his sleep.

When we went back to see Adam, we met with the neonatologist who gave us a little different outlook. He said that the lungs were small and underdeveloped but were functioning better than they had expected. The day before he was on 100% oxygen on the ventilator and now he's down to 40%, and his saturations are just as good. He said that this could be what they call "the honeymoon period" when they begin to look better but then get worse again and we should be able to get a better idea about his lungs within the next 24-36 hrs.

He also said that IF his lungs continued to improve that it would be possible to do dialysis. It would be very risky for a baby his size who is also on a ventilator and he could die during the shunt placement, but it is possible.

More things we have to worry about are the urinary tract obstruction and his heart condition that he will need open heart surgery for. Even if he survives one surgery, he may not survive the next because if his numerous problems.

Now they are having trouble keeping IV access. All of his tiny veins keep blowing. They are trying for the second time to place a line into his umbilical artery and I am praying that it will work. If not then they will have to consult a surgeon to place a broviac line.

Please keep Adam in your prayers! I am not giving up on my son, but I do want whats best for him.

Wednesday, October 28, 2009

Almost there...

Today I am 34 weeks 5 days. 15 days until the c-section. As of Oct.23, Adam is estimated to weigh 4 lbs 6 oz. He is measuring about 9 days behind.

Things have pretty much been staying the same with Adam. I am going for a million Dr appts a week. Actually only 5, but it feels like a million. He has been passing all of his test. Sometimes it take the Dr a little while to get him to cooperate so that they can see what they need to see to assure that he's OK, but he eventually does it. The have stopped measuring the amniotic fluid. It hasn't changed too much over the last several weeks and its more stressful to hear such a low number every week. Several appts ago, it did look like it was going to start to go up, but the next appt, it was back down.

There is a new finding with Adam's heart. He has an arrhythmia sometimes. They haven't seen it at every appt, but at several they have. At first they thought that it was from using my inhaler for my asthma quite often during the "cold front" that we had but now I am back to using it like normal and it's still there sometimes. Nobody is too concerned about it. I am not either. We will just have to see what happens when he's born.

Over the weekend, I wasn't feeling too good all week, lots of cramps contractions and a little spotting. I didn't think it was necessary to go to OB triage, so I just waited it out until my appt on Monday. During the appt, they checked my cervix and I am now 1 cm dilated and 75% effaced. The MFM Dr wanted me to be monitored for awhile to see if they needed to stop the contractions so he sent me to OB triage. They hooked me up and I was having contractions about every 3-5 mins and they were starting to hurt. After 3 shots of a medication called terbutaline, they had slowed to about every 7 minutes so they sent me home. Since then, I haven't had too many. During my appt today, I only had 2 small contractions, pretty typical for this late in the pregnancy. Hopefully they will stay away. Not only do I not want to end up delivering here, I do not want any more terbutaline and definitely don't want any IV Mag Sulfate. The terbutaline makes you very jittery, dizzy, nauseous and gave me an awful headache. And from what I have heard about Mag Sulfate, it is much, much worse!!

Everyday I wake up and feel Adam move, I thank God that he allowed him to make it through the night. The closer I get to the delivery date, the more nervous I am getting that he is going to die before I even get to hold him while he is breathing. I know that whatever happens, it will be what God wants to happen, but I want more than anything to be able to hold my baby alive and for him to have a chance to live. I want him to prove the Dr's wrong and show everybody that God has performed a miracle with my son!

At this point, I am excited to meet Adam, but nervous about what the outcome is going to be. I will never fully be prepared for what I am going to have to go through, but I feel like I am as ready as I ever will be for God's plan to be revealed to me. Part of me feels like I am counting down to the day my son will die and I feel guilty about that. But this whole pregnancy has been such an awful emotional roller coaster and I am ready for this part of the ride to be over. If Adam is not supposed to live here with me on Earth, then I know he is better off in Heaven where he will have no pain and not be subjected to the many surgeries he will be put through while he is here. He can go to Heaven and be with his other siblings that I have miscarried.

That being said, I am not giving up on him and will do everything humanly possible to give him a chance at life. I believe that God will tell me when enough is enough and it's time to let him go. Hopefully, that day will not come until I am old and have left earth myself!

Wednesday, October 14, 2009

A Marathon of Dr appts

I haven't posted anything new lately because not too much has been happening. I have been seeing my OB Dr every Monday for an appt, including a non-stress test. Then on Wed and Fri, I go to the hospital for non-stress tests. On Monday and Friday, I see the MFM here in town for an ultrasound that includes a biophysical profile. All of these appts have been going just as expected and Adam seems to be doing fine without having any fluid.

I will be 33 weeks this Friday, Oct. 16th. Right now, Adam's estimated weight is 3 lbs 15 oz. He is measuring about a week behind, but a few weeks ago he was 2 weeks behind. This is only an estimate but he has really been putting on weight in the past few weeks, hopefully it will continue like this.

Yesterday was such a long day and I hope to never have to repeat it! We drove to St.Pete, had 3 Dr appts and a tour of labor and delivery in the hospital where I will be delivering and then drove back home. Luckily, Allison was exhausted from a fun day with her great grandparents and was asleep by 7:30! So I was able to get some much needed rest.

The first appt we had was with the Maternal Fetal Medicine Dr in St.Pete. The Dr we saw was very nice and didn't remind us how bad Adam's prognosis really is. I really appreciated that because by this point, we know what we are looking at and I hate being reminded of this constantly. We had an ultrasound which was pretty much the same as all the other ultrasounds have been except they found a pocket of fluid that nobody else has been measuring, so the level was a little more than we expected. I think she said it was 1.9. All the other ultrasounds have been between 0.5-0.7. I'm not sure if this is possibly a new pocket or one that nobody else has seen because she looked for it really low, underneath Adam's little butt. After the ultrasound we just went over some details about the c-section and they gave me the orders to bring to the hospital. I don't have to go back there now. I will just see the Dr on Adam's birthday.

Next we met with a lady from the hospital who gave us a tour of the labor and delivery department. It wasn't really that educational, but it was nice to see where I will be staying. Maybe it will help me be a little more comfortable when the big day comes. I also pre-registered for the hospital, so that's one less thing to worry about when I go in.

The next appt was with the cardiologist. They did a fetal echo, and it took forever! The ultrasound tech said that Adam was in the worst position possible to get a good look at his heart. They didn't find anything new. We are still just looking at a bicuspid aortic valve and possible aortic coarctation. The one thing that does concern me, is that the Dr said that they would be able to do heart surgery if Adam had adequate kidney function. But we know he's not going to and every time I asked if he was on dialysis if he would still be able to have the surgery, the Dr kind of talked in circles to avoid answering my question. So, I am really confused. We don't know how severe the coarctation is and it might be so minor that he doesn't need surgery until he's about a year old. But if it does need repaired right away, I don't see how they can allow a baby to die of a heart defect in order to save his non-functioning kidneys. Doesn't make sense to me. But I am going to let it go and not stress out about it. We will have to see how everything turns out when he's born. The cardiologist in Miami didn't even see the problem so I'm hoping its not that bad and can wait.

The last appt we had was with the urologist. He didn't really have much to say that we didn't already know. He seems to think that the blockage probably is a posterior urethra valve, an extra flap inside the urethra that is blocking the flow of urine. This is what the Dr in Miami thought also. He went over the plan for whats going to happen after Adam is born. Nothing is going to be STAT and can be handled as routine.

I am very happy that I made it through yesterday. I went for a non-stress test today and Adam did great. NO appts tmrw!!! Yay!! Then 2 more on Friday....Praying that everything either stays how it is now and Adam makes it just like this until delivery or it gets better and God chooses to heal my baby!

Wednesday, September 30, 2009

It's in God's hands now

We went to our appt in St.Pete yesterday, fully expecting to be kept for observation like my OB had suggested, but the appt went in a whole new direction. The dr there does not think Adam has a very good prognosis. He said that there is a very high risk of cord compression, which would lead to a still birth. To be sure this doesn't happen, he was willing to do a csection today, but said that he would have practically no chance to survive if he was born now. He believes that it would be best to wait to as close to 37 weeks as possible in order for Adam to be big enough to survive the surgeries that he needs. But he doesn't think even at 37 weeks, that he has much of a chance to live anyway. We scheduled a c section for Nov. 12, I will be 36 weeks 6 days. 37 weeks was on Friday the 13th, and I am not superstitious, but I don't need anything else not being in our favor.

Steve called the MFM here today to see if they could possibly keep me in the hospital for observation until 37 weeks or at least until delivery became absolutely necessary, but the Dr said that he doesn't feel that its necessary. All of the Dr's agree that Adam will probably be stillborn, but none of them are willing to do anything about it!! I have tried but it is out of my hands now.

Every minute of the day that I am not feeling Adam move, my mind is wondering if maybe he compressed his cord and died. Mentally, the only way I am going to survive this, is by giving it to God and knowing that it is in his hands. I don't like feeling helpless, but I don't know what else to do. It is going to be a very long 6 weeks. The only thing that is keeping me going is knowing that Allison needs me. I almost believe her when she sees me crying and comes over and hugs me and tells me, "don't cry, mommy, its gonna be o-tay"...

Monday, September 28, 2009

Overnight Hospital Stay

Sunday morning I work up and had awful cramps. I just kept hoping they would get better and trying to do things to make them go away, but after 6 hrs they still persisted. I wanted to wait it out a little longer but Steve insisted that I go to the hospital to get checked. At the hospital I was hooked up to the machines to see if I was contracting, and at first I was not. But Adam's heart rate was not going up and down like they wanted it to. So I was sent to have an ultrasound. During the ultrasound, they did a biophysical profile, it's just a score they give babies to judge how good they are handling things. Adam's score was only 4/8 because his fluid was so low and he was not practicing his breathing. They also ran a test to see if I was likely to go into labor within the next 2 weeks. (The Ffn test)

We got back from ultrasound and the nurse was kind of panicked at the biophysical profile score and decided to hook me back up to the monitor. It was already decided that I would be staying the night for observation anyway. The Ffn test came back negative, so I was at lower risk of going into labor on my own. Then I started having lots of contractions. They weren't all that painful just really uncomfortable. The nurse told me that she had spoke with the dr on call and they were going to have the MFM dr on call talk and decide if they needed to deliver now. They even called the NICU to let them know that we might be delivering a premature baby with special needs. I started to get really nervous. Not only was I not ready to have Adam yet but I wasn't in St.Petersberg where I needed to be and I did not want him transferred up there while I was still there.

Finally they contractions stopped and Adam's heart rate started to look better, going up and down like they liked it. The OB on call came into my room and and did an ultrasound of her own. She was able to see Adam breathing and got an amniotic fluid index score of 2.2. Much better than the ultrasound tech had gotten. So were were safe for the time being! I was hooked up to the monitor all night and everything seemed to be fine.

I had an ultrasound this AM and Adam was practicing breathing again but his fluid was already down to 0.79. My OB and the MFM dr that had been following me came in and decided to send me home on bedrest. I have an appt tmrw in St.Pete to see the MFM there for their opinion. My Ob advised me to pack a suitcase because they might want to keep me for the duration of the pregnancy and even said that if this wasn't mentioned then I should bring it up myself.

Sorry if this post isn't very easy to follow but it is very hard to think these days. Leaving Allison last night was awful and I am not looking forward to being away from her for longer periods of time. If I talk to anyone and seem a little short or impatient, please don't take it personal. All of this is really starting to take a toll on me mentally and I really am doing the best I can to handle everything that has been thrown at me. Please continue to keep us in your prayers!!

Wednesday, September 23, 2009

Things are starting to move along

On Monday we went for our first non-stress test appt with the OB. Adam seemed to do pretty well once the Dr woke him up. His heart rate was going up and down just like it is supposed to and I only had on very tiny contraction. My OB said that if he didn't know that I had low amniotic fluid that he would not be able to tell from the results of the test.

Tuesday I had to go have the 3 hr glucose tolerance test done. This was awful!! I couldn't eat or drink 12 hrs prior to the test. Usually at night I get up about every hour and get a drink so I didn't get much sleep the night before the test because I kept having to convince myself to go back to sleep thirsty. I had to drink another orange drink, didn't taste so bad because I was SO thirsty but it made me feel really bad afterwards. I was dizzy, nauseous and really felt like I was going to pass out. It took a lot of will power to keep it down but I knew if it came back up then I would just have to do it all over again. AND I ended up having blood taken 5 times in 3 1/2 hrs, I felt like a human pin cushion.

Turns out I failed the test and now have been diagnosed with Gestational Diabetes. It is really beyond me how this happened to me. I will talk to my OB about it next week for likely causes because I just don't feel like I fit the risk factors. I have to go Monday morning and take a 3 hr Diabetes Class. Bet its going to be fun and now I have to poke my finger 4 times a day to check my blood sugar.

Today I went to the MFM dr for my weekly ultrasound. Didn't go so well. My fluid is down to 3.1, so it dropped 1.2 in 6 days. Its still going down at about the same rate as it has been. The ultrasound tech was not able to get Adam to move for her at all during the scan. Usually even if he was sleeping, he wakes up as soon as they start the ultrasound because he hates it, but all the poking and prodding of my belly wouldn't make him move. The tech kept watching different things during the ultrasound so that she could give him a good biophysical profile score. This is a score they give babies to show how they are handling life inside the womb. I don't know the exact score but I know he didn't do well because the Dr had a much different attitude about him than he did last week.

He first started out pretty much by lecturing me about having the diabetes and how I needed to change what and how much I eat. Well if anyone knows me, I have force fed myself to eat this pregnancy because I don't have much of an appetite. Lately I have been eating a lot of fatty/sugary foods to try and fatten Adam up. Looks like all it did was cause another problem for me. Then he goes on to talk about how the life expectancy of Americans is going down because of obesity and diabetes. Great way to talk to a worried, anxious pregnant mother that feels guilty for everything that is happening to her baby anyway... I guess he could have used a little more tact, knowing what I am going through.

Then we got to talking about Adam. He is not growing like he should, he has only gained 6 oz in the last 2 weeks and is now measuring 2 weeks behind. There are multiple reasons why his growth could be slowing and we're not sure the exact cause but no matter what I do, he's not going to be a big baby. He's obviously getting pretty concerned about the situation because his new goal is delivery between 34 and 35 weeks. This would be between Oct 23 and 30th. But he's not sure if we'll even be able to keep him in there for that long. I went today to get the 1st steroid shot that will help mature Adam's lungs and have to get the 2nd one tmrw. He called the MFM dr in St.Petersberg to get them to see me soon. So, as Adam's condition worsens, he seems to be proactive in taking care of the situation.

There were a few good things that came out of the appt today. Adam's chest cavity seems to be of normal size which leads the Dr to believe that his lungs have been able to develop. I was so relived to hear this because if his lungs were too small and underdeveloped, there's nothing any of the dr's could do to help him. He also said that when Adam is born, dialysis won't be urgently needed. When he is born his body will be free from toxins because the placenta has been doing this for him and it will probably take a week before dialysis is needed. This will allow time to stabilize him. He also said that there was not a size restriction on peritoneal dialysis. I had read before that babies had to be 8-9 lbs before dialysis would help, but he said that his size won't matter. This was such a relief.

I think that's about it for now, no more appts until Monday!!

FYI- I will be 30 weeks on Friday Sept 25th.

Friday, September 18, 2009

Quick Update...I love my OB Dr!

Steve called this morning to try to set up an appt with my regular OB Dr to get his opinion on the situation. We didn't get an appt, but the Dr actually called and spoke with me himself. He seems to agree with us, that we can't just let Adam run out of fluid and die of cord compression. Right now, the fluid is low, but it is enough that we don't have to panic yet. He wants me to see him twice a week for non-stress tests. This is when they will hook me up to a monitor and watch for any contractions or any signs that Adam is in distress based on how his heart rate is going up and down. So, this is a start in the right direction and I will be reporting to him every week how the amniotic fluid is so that he will know when to intervene. I feel much better and can relax about the whole thing right now.

Thursday, September 17, 2009

Bad news, good news and more bad news...

Had my weekly MFM appt today. Didn't go very well at all. As expected, the fluid dropped another "1" on the amniotic fluid index scale making the fluid 4.3. If it continues to go at this rate, I will be out of fluid in about a month. I asked the Dr about our options when I fluid gets really low and pretty much he said we don't have any. He said that it would be too early to deliver, and he won't add fluid because it could cause pre-term labor. Well, I know Adam would be very small and have even more issues if he was born within the next month, but I would rather a small premature baby that has a chance at life than a baby that has died from cord compression due to low fluid. I don't even know what to do from here... Maybe I can go to St.Pete and try to get a second opinion. I feel like the Dr's have given up on my baby and I am helpless.

The good news that I got today, is that I should be covered by medicaid, hopefully starting in October. They will also go back and start paying past bills that I have been unable to pay. I just now have to hope that the specialists that Adam needs to see accept Medicaid. If not, then that will be another problem to deal with...

And for more bad news.... My OB office called and said that I failed the glucose tolerance test!! How did that happen?? I have only gained 6 lbs this whole pregnancy and am not even back to my pre-pregnancy weight!! Now I have to go on Monday and take the 3 hr long test. That should be lots of fun. I guess, in a sense it would be good for Adam because usually baby's whose mothers have Gestational Diabetes get really big. That would be a plus. I know there are other complications for the baby too, but maybe this would help plump him up for his upcoming surgeries.

Its been a rough day and I need to try to find the strength to get through these set backs.

Tuesday, September 15, 2009

Pediatric Cardiologist Appt

Steve and I made the trip to St.Petersburg yesterday to see the Pediatric Cardiologist. Last week when we were at the MFM Dr appt he said that the heart looked really good, so I really wasn't expecting to hear anything but good news.

The news wasn't good but it definitely could have been worse. They found 2 problems during the echocardiogram. They believe that Adam has a bicuspid aortic valve. Basically, the aortic valve is one of the valves in the heart. Usually the valves have 3 "leaflets" but Adam only has 2. Sometimes people can go on to live normal lives until they are much older with this condition, Other times it needs to be treated early. There isn't a way for them to tell which category Adam will fall into until after he is born. The Cardiologist didn't seem to make a big deal of this finding, which was actually comforting because if it had been awful news, he would have gone over it in greater detail than just telling us about this so casually.

The other problem that they found was the aorta in Adam's heart seems to be to narrow. Until he is born, it cannot be accurately diagnosed but he is leading towards a condition called Coarctation of the Aorta. This condition will require surgery shortly after he is born. The Dr said that it is not open heart surgery, that they can just make several incisions in the chest and fix the aorta that way.

We have to follow up with the cardiologist in a month for another fetal echocardiogram. I really don't mind going to St.Pete to have these tests done. It is such a different place than Miami. It is cleaned and organized. I feel much better about having Adam there instead of Miami.

Had my regular OB appt today. It was pretty much uneventful. I had to drink the gross glucose drink to test for Gestational Diabetes. It took the Dr a couple minutes to find the heartbeat because Adam is so low compared to where babies usually are at this point. But once he found it, it was a good 135 beats per minute. My OB was concerned about the fluid. He said that usually when the fluid gets low, they will just induce or do a c-section to get the baby out to avoid any cord compression. I will take to the MFM Dr about this on Thursday, to see what his opinion is.

Please pray for kidney function and fluid! I have to keep Adam in as long as possible so that he will have a better chance of surviving the surgeries that he needs!

Sunday, September 13, 2009

Here we go again...

Today I am 28 weeks and 2 days pregnant. Finally in the 3rd trimester!

I had my dr's appt last Wednesday, I just have been having those days where I have felt defeated and close to wanting to give up. During my weekly ultrasound, the dr has determined that the amniotic fluid is low again. The last several weeks, all of the ultrasound techs have been saying that it has been getting lower, but the Dr would come in and find more fluid and say that its fine. I have been trusting him about this. Well, this week, he agreed with the techs and the fluid is about 5.5. It should be at least 9. Right after the surgery, it was up to 12. This could mean that Adam's kidneys are starting to shut down. I was so disappointed and upset, I didn't even want to ask any of the questions that I had planned on asking that appt. I just wanted to leave and go hide somewhere. Maybe this is all just a very bad dream and I'm going to wake up in a hospital someday coming out of a coma and none of this ever happened...

I am starting to adjust to this bad news. Its just scary because if the fluid disappears completely, then there is a high risk of cord compression which will cut off everything going to and from Adam and he could be still born if we don't catch it in time. I am not willing to let this happen. We have come too far to lose him from a cord accident. If I lose all amniotic fluid, then I am going to insist that they 1) put more in 2) deliver him early or 3)keep me in the hospital to continuously monitor his heart until he is ready to be born. Right now Adam is only about 2 lbs 4 oz. He is growing, but the growth seems to be slowing. I am not sure if this is because of his single umbilical artery or my lack of weight gain. I do plan on asking my OB this week if there is anything I can do to fatten up my little boy. If he is going to come early, then he needs to be as big as possible.

During the ultrasound, Adam is also still breech. With a normal pregnancy, there is still plenty of time for the baby to turn head down, but Adam is running out of room and the MFM Dr thinks I will have to have a csection. At this point, this is the last of my worries. I'm sure the recovery is awful, but honestly, I have an awful recovery after a vaginal delivery with Allison so I will be willing to do whatever is the safest for my baby boy.

I have lots of appts this week. On Monday we are going to St.Petersburg to see the cardiologist. On Tuesday, I have my regular OB appt that will include the glucose tolerance test and another fetal fibronectin test to make sure I'm not going to go into labor anytime soon. Then on Thursday, I have to go for my weekly appt with the MFM dr. Should be a very busy week.

Here is a bible verse Steve put on the background of our computer today that is starting to help me get my mindset back where it needs to be .

Jeremiah 29:11
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Sunday, September 6, 2009

This must be part of God's plan, right?

I want to start out by letting everyone know that this post is going to be a little different than the others. Usually I mostly give the facts with a few added emotions. This time, I will give a few facts and mostly emotions. I apologize if it doesn't make sense and kind of runs together, but there are a few thngs I want to share.

After my dr's appt on Wednesday, my OB had agreed to allow to me continue to work on "light duty". Unfortunately, there isn't anything at my job that I can do that would be considered to be
'light duty". I spoke with my supervisor Thursday and she informed me that I would just have to use my FMLA hours and then they would not be able to hold my position for me. I have about 9 weeks of FMLA hrs. During this time I will continue to be an employee of LMHS and still be able to receive benefits, including the very important health insurance. After this time, I will be "let go" from my position and will lose all benefits, including health insurance. Nice, huh? Lose health insurance right before I have a baby, a special needs baby at that. Ofocurse, there is always the option of paying for COBRA (this would allow me to pay a large amount of money to keep the same insurance for a specified amount of time) or being added to Steve's insurance. Either way, without my income, actually even if we did have my income, there is no way we could afford this!! So I applied for Medicaid.

Usually I don't like asking for help from anyone, not even the government. I want to do things on my own, financially. I hate when there are people I know that are just using the government to sit around on their butts and be lazy. I don't want to be clumped into this category. I know there are some people who really only survive from governement assistance and I believe that these are really the only people who should be getting any kind of financial help. But I don't even know if I will qualify for Medicaid or not. Right now, I am just praying that I do because I really don't know what I will do if I don't get it.

I really just don't know how a big company like Lee Memorial can allow this to happen to one of their employees? I have worked there for 4 1/2 yrs and because of a complicated pregnancy, they are not willing to allow me to remain an employee!! When I was pregnant with Allison and needed to go on lght duty, there was a wonderful program that allowed me to find a position where I could just sit down and work on the computer all day. This really saved my FMLA hours so that I would still have enough hrs to take off when she was born. And I was able to keep my health insurance. I just think that this hospital system is only out for themselves these days and really doesn't care about their employees or their patients for that matter. As long as they get their medicaid/ medicare reimbursment and the "big wigs" can sit in their big offices and comfy chairs, nobody else matters.

Why is all this happening? All I wanted was a baby, a brother or sister for Allison to share her life with. Now I have a sick little boy growing inside me, that may or may not even make it out of the hospital. Things aren't looking too bad right now. His heart is looking better. BUt we don't know if his lungs were able to develop when my amniotic fluid was low. If they didn't, there's nothing they can do for him. Even a ventilator won't be able to sustain his life. We don't know how his kidneys are going to turn out. There may be such little function that he won't live long enough or even be big enough for dialysis. He may be on dialysis for months or years. He might need a kidney transplant. There might even be problems that the ultrasounds haven't been able to pick up. There are so many things that we are not going to know about until he's born. But why is this happening? I have pretty much lost my job. Its going to take a miracle not to lose our house and our car. We could virtually lose everything and I might not even be able to bring a baby home from the hospital!

I am just trying to believe that all of this has to be part of God's plan for me and my family. Why else would all of this bad stuff be happening? I hope that there are better things in store for us. I hope that God will bless us for having faith in him, even during these bad times. I do need everyone's prayers so much right now. Unless Adam decides to make an early appearance, I will probably be induced the 2nd or 3rd week of November. That is just a long time to have to sit around the house and wait. Wait to celebrate my healthy son. Or wait to mourn the loss of my child. The reality of everything is starting to set in. I am not on bedrest, but can't really do too much. Just normal activities of daily living. My mind is my worst enemy right now. All I do is think. Think about Adam, being unemployed, uninsured , think about how I wish I could do more with Allison but physically and financially can't. Think about how I have just about nothing for Adam if he does come home from the hospital. No crib, no swing, no carseat because shopping for it just makes me cry thinking about how I might never get to use any of it.

I am just going to try to take things one day at a time

Wednesday, September 2, 2009

Had a couple scares...

I didn't write an update last week because not much changed. I did have a little scare. Adam decided to change positions on me. In doing that he was in a position that I was barely able to feel him move from Sunday afternoon until Wednesday. I felt a few slight movements and hiccups so knew he was alive, but convinced myself that the shunt had fallen out and he didn't have any fluid left and that's why I wasn't feeling him. But during the ultrasound I was assured that he was moving but his kicks were more towards my spine and diaphragm so I couldn't feel much. The shunt was in place and the fluid level was staying about the same. The MFM Dr received the Echo results from Miami and decided he still wanted a second opinion because of an inaccuracy in the report. He thinks that error was in transcription but to be sure we now have an appt in St.Petersburg on Sept 14th to see a pediatric cardiologist.

This week has been a little more eventful for me, and I like UNeventful weeks! During work on Monday I was cramping pretty bad and started spotting a little. I tried to ignore it and go about my day, but when I noticed the spotting a 2nd time, I decided I had to call the Dr. I didn't think it was anything to worry about but they insisted I come in. During the visit, the Dr checked my cervix and it was still closed and thick. Perfect! He also ran a test called fetal fibronectin or FFn. It is a swab that they take that will show if you are at increased risk to go into labor within the next 2 weeks. I was also put on a contraction monitor. It picked up 1 good contraction, but not enough to concern the Dr to do anymore testing. He sent me home on bed rest until Wednesday (today).

Ok, now for today's appts.. Went to the MFM medicine Dr today. There really isn't much to say about that appt. Fluid level is constant, heart is still somewhat asymmetrical, but doesn't look too bad. The Dr (the one I have referred to as being pessimistic) actually came out and said that he thinks the cardiologist is going to say that the heart looks good enough to be considered "normal". = ) Adam is still practicing his breathing and squirming all around. And this is the 2nd time that I have been told that he has HUGE feet. Right now, they are about 2 inches long! They didn't do any other measurements because I just had that done last week, but next week I should be able to give an update on his length and weight. I am 26 weeks 4 days today, an average baby weighs just over 2 lbs and the past 2 measurements he has been right around average.

Rushed from the MFM Dr appt to my regular OB appt. The Dr told me that the FFn test came back negative, so he is pretty confident that I should not go into labor within the next 2 weeks but he can't make a guess past that. He will repeat the test in 2 weeks. He also doesn't want me to work anymore. As nice as it sounds to not work, we cannot financially afford this! I told him that I would rather go on light duty. He ok'd this as long as no other complications arise. So hopefully my work will be able to find a "light duty" job that I can do so I can earn money for a little while longer until he decided that I HAVE to stop working completely.

Thursday, August 20, 2009

Another weekly appt....

Went to my weekly appt at the MFM Dr yesterday. It was pretty uneventful, which is actually how I like it anymore. During the ultrasound, we saw that the shunt is still in place. Thank you, God! Adam is now measuring 1 lb 11 oz!! He has grown 6 oz in a week, so next week, he should probably be over 2 lbs. Me , on the other hand have lost 2 lbs. I have been pretty sick since Monday night with a stomach bug and have been losing lots of fluid and haven't been able to successfully replace them. My amniotic fluid is down to a 10 instead of 12, but the Dr thinks its just because I have been dehydrated so I am trying my best to push fluids.

During the ultrasound, the tech said that Adam is practicing his breathing!! Babies usually start to do this around this time and I think its a good sign that hopefully his lungs were able to develop during the critical time when my amniotic fluid was low. If his practicing doesn't mean this, then I am sticking to it being a good thing and thinking that "ignorance is bliss" because I need something good to hold on to these last few months of pregnancy!

That's pretty much all for now. Go back again next week. Hopefully the Dr will have received the Echo report from Miami. He said that if he's not satisfied with the results then he'll schedule an appt with a cardiologist in St.Petersburg, which is what I want no matter what the results say. Doesn't hurt to get a second opinion!

Thursday, August 13, 2009

More of the same good news!

Had an appt with the Maternal Family Medicine Dr in Cape Coral yesterday. It actually went pretty well. It is the first time I have left that office not hysterically crying. The ultrasound tech was very nice and knowledgeable. She used to work for the specialist in Miami that we have been seeing, so she really knew what she was looking for. She found the shunt in the very tiny bladder right where it should be. She also was able to get good look between the legs and showed us his "boy parts", very exciting since we have not been able to see any proof that he is a boy, besides the amnio, since all the ultrasounds were saying "girl". We also found out that Adam weighs about 1 lb 5 oz! Yay, he is growing right where he should be instead of a week behind like he had been!

The Dr came in and he really is always such a downer. He didn't say anything that I didn't already know, but he has a way about him that puts a spin on the information to make it seem a lot more negative than it is. I guess Steve and I are pretty informed about whats going on and do our research, so we know how bad things can get. With this information we have chosen to be positive about it. Maybe some of the other patients don't really know what to expect so he is used to spelling things out and making sure they realize how severe the situation is. I didn't let his negativity get in the way of my happiness.

I told the Dr that I wanted a second opinion about the heart since everyone has been so sure that there is something very wrong with it. He said that he would rather just watch it for about another month and see how it looks because it looked more normal during this ultrasound than it ever has. He thought maybe the big bladder was pushing on the heart causing it too be distorted in the ultrasounds. I guess that could happen, or maybe God is answering our prayers. = )

I am just so over these dr appts and dr's! Our Dr said that he has his "suspicions" about this baby and his "suspicions" are usually not wrong. Whatever. Let's see, he was the one that was pretty confident that Adam had trisomy 18. WRONG! He was pretty confident that Adam had Hypoplastic Left Heart Syndrome. WRONG AGAIN. So, I am taking these "suspicions" with a grain of salt. I have a good feeling about my baby and am not going to let him bring me down anymore. He is not in control, but God is!

Anyway, we also decided that I am most likely going to be giving birth in St.Petersburg so that Adam can go to the NICU there where they have dr's that will be able to fix his urinary blockage, give him dialysis if needed and they also have invasive cardiology if needed. I will give birth in one hospital and then they will take him to the hospital next store. Wish I could be in the same building, but at least I will be in the same city.

On another note, I will be 24 weeks tmrw!! This is when Dr's consider a baby to be "viable". As much as I hate this concept, it's good to know that if I went into labor , then they would attempt to save him! This also marks the point when it is illegal to terminate a pregnancy, so the dr's can stop bringing this up as an option for me after I have told them "NO" repeatedly!

Next appt will be next Wednesday. Will update again then unless something happens between now and then. Please keep us in your prayers and we can keep proving these pessimistic dr's wrong!

Monday, August 10, 2009

Wonderful Appt today!!

Today was my first appt with the Dr since having surgery last Tuesday. We had an ultrasound and the shunt is still in place in the bladder!! The amniotic fluid is also much better than it had been. During the surgery the Dr had to add some fluid and he said that the fluid that I had today was not the fluid he added during surgery. If at least 1 of the kidneys weren't working, then the fluid would have been very low again! So that means, that as of right now, there is at least 1 kidney still working!!

The dr said that everything looks good right now, but "we haven't won the battle yet". The shunt could fall out, Adam could pull it out, there still might be severe kidney damage. But right now there is enough fluid to develop the lungs, which is the most important thing! He also said that he would like me to stay pregnant for at least 10 more weeks! Well, since I am only 23 weeks right now, I would hope I would be pregnant for like 16-17 more weeks at least. I guess with having the surgery it puts me at risk for preterm labor, so I probably won't be having a December baby, but possible a November or even October. He also said that the babies that have surgery on their bladders tend to be much larger than "normal" babies. Which is good, because if I do have Adam early then he will still be big enough to have surgery to fix the blockage in his bladder!

We also asked about the echocardiogram that we had done a couple weeks ago. He didn't go into details but said that the cardiologist said that it was "within normal limits". This is such good news, but I am going to be very cautious about believing it. I don't know anything about the cardiologist that read the echo. I will definitely get a 2nd opinion just to be sure. I don't want something to go wrong when Adam is born because of something that this cardiologist may have missed.

Right now, I don't have to make any more trips to Miami, I will just be seeing the Maternal Fetal Medicine Dr here and then eventually (hopefully sooner than later) going to have consults with another cardiologist and urologist (probably both in St.Petersburg) so we know what to be prepared for when Adam is born.