Adam Stephen

Gotta get this out....

2010-12-30T19:07:00.000-05:00

This post is going to be a little different, because it's not completely going to be about Adam like all of my other posts have been.

If you have followed my blog from the beginning, then you know how long I have been wanting a 2nd living child. I say "living child" because I consider Adam to be my second child, but I have been wanting a living sibling for Allison for over 2 years now. If you haven't been following me since the beginning, then I will give you a recap. In September 2008 we tried to get pregnant after receiving the news that my rheumatoid arthritis was progressing and I would need to be on medication to stop any further joint damage and the medication couldn't be taken during pregnancy. We conceived right away, but a few days after I got a positive test, I had a very early miscarriage. The dr's call it a "chemical pregnancy". Whatever you call it, it still hurt really bad. We tried again right away and I got pregnant right away again. This time it lasted until 7.5 weeks when I had an ultrasound that showed that the pregnancy had stopped growing a couple weeks before. I had to have a procedure called a d&e since my body wasn't recognizing that the pregnancy had stopped progressing. After the procedure, my Dr told me to wait 3 cycles before trying again. The 3 cycles went by and I got pregnant again. This time, with twins. Only at 8.5 weeks, twin A stopped growing. The remaining twin was Adam and of course you know how that went. After Adam we weren't sure if we were going to try again. Then in July of this year we decided that we were ready. I got pregnant right away again, but had another early loss shortly after getting a positive test. I saw my Dr and he ran tests to see if there was a reason for all of these losses, but he couldn't find anything. In September, we started trying again and this time it took 3 months to become pregnant.

And this is where the present story comes in. I started out very optimistic about this pregnancy and started telling family at about 5 weeks. A few days later, I started cramping and spotting and was sure I was having a miscarriage. I went in for an ultrasound and there was nothing there to indicate a healthy or unhealthy pregnancy. I was sent for more blood work and then would come back for another ultrasound. At that one, there was growth. There was actually a gestational sac and the start of something in it. I left pretty confused because I had actually started bleeding and didn't understand how I wasn't miscarrying. A few days later the dr brought me back in for another ultrasound and told me that there was more development and now there was also a yolk sac and the start of a fetal pole, BUT it appeared that the sac was implanted in my cervix instead of my uterus. A pregnancy cannot continue in the cervix because there isn't enough room for the baby to grow and if it did continue, I would eventually bleed out and die. I was referred to a specialist who confirmed this diagnosis when he did his own ultrasound and then told me that I would need a shot to end the pregnancy. During this last ultrasound, there was further development and a heartbeat... My baby was alive and I had to kill it by ending the pregnancy or it would kill me! I knew I had to get the shots or I would be leaving Allison without a mother.

I cried and kept asking God "Why?" After everything we had been through with Adam, why was this happening? Haven't I been through enough already? On the way home, I told my baby (who I believe was a girl) that I was so sorry that I had to do that and to please go to Heaven, that her big brother Adam was there to show her around. I told her that mommy would see her again someday and that I loved her. In my head I know I did what I had to do, but my heart hurts so bad. Today has been a week since I got the shots and my head is still telling me that I killed my baby. I just don't understand why I can't have a second living child. It seems like everybody I know is announcing that they are pregnant these days. I would love to give it one more shot, but Steve is totally against it and I don't know if I can take anymore heartache. I am also upset for Allison. I don't know what I would do without my brother and sisters and she is going to grow up without any. I feel like she is being cheated. It also doesn't help that she constantly prays to have a baby sister. And I can't give her one.

We weren't going to share this with anyone, and Steve doesn't even know I am writing this. But keeping this inside has been eating me alive. I want another baby! I want to be pregnant! I want to give Allison a sibling! Every time I see a pregnancy announcement, an ultrasound picture, a pregnant woman complaining about being nauseous, a mother of a newborn complaining about not getting any sleep, it makes me want to scream and cry. I am becoming so bitter! For the new year, I am going to have to guard my heart until it can heal some. Until I come to terms with Allison being my only child that I get to see grow up. I am going to try to stay away from Facebook, Babycenter and even the blogs. I will be back and try to catch up with everybody when I feel like I am stronger, but right now, it is just too much...

The post I never wrote

2010-12-23T18:37:00.000-05:00

I can't believe I haven't written a blog since Adam's birthday. I have been wanting to, many times. And it's not because I don't miss Adam or that I have forgotten about him. I just haven't been in the place to share what I am feeling because it is the same feelings over and over again. I miss Adam. I wish he was here with me. I dream about the day I get to see him again in Heaven.

Anyway, I still am not in the place to write down any feelings, but I wanted to share some pictures from Adam's Birthday and from the anniversary of the day that he got to meet Jesus.

Instead of making a Birthday cake, I made Adam yummy Birthday cupcakes.

Adam's Birthday decorations and gifts.

The "A" cupcake. Allison insisted it was Adam's but didn't like that he wasn't here to eat it. And his 3 sparklers; 2 stars and a 1.

The sparklers lighting up as we sang "Happy Birthday".

The balloon to Adam from Steve

Another balloon....

Allison drew a picture of Adam on her balloon.

And she wrote his name

My balloon to Adam.

Proud big sister with her balloon.

Steve waiting for the time to "send them to Adam".

Me, holding on to the balloons tight and not wanting to le them go because it felt like I was letting go of Adam again.

The 1st one was off....

Steve's were not far behind.

There they go!

We stood there and watched them until we couldn't see them anymore.

Now I am preparing to spend another Christmas without Adam. Last year, I bought him an ornament for our tree and said that it would just be a one time thing. Ha! I can't leave him out. I bought him another ornament, picked out another picture of him to go in the frame and it is in the front of the tree right next to his big sister's!

Happy Birthday, Adam!!!

2010-10-30T20:23:00.000-04:00

One year ago today, at exactly 9:23am, a 4 lb 8.5 oz baby boy was born. The most precious baby boy ever! I wish I was celebrating Adam's birthday watching him smash a little cake, toddle all around the living room and try to open his presents. But instead I celebrated it by baking cupcakes, bringing them to the cemetary and singing "Happy Birthday" while watching sparklers light up in the ground. So, no, today isn't how I would like to have celebrated my son's first birthday, but overall it was a peaceful time thinking about Adam.

Adam,
I love you more than words can even begin to express. I wish I was able to hold you today, but if mommy can't be there for you, I'm happy that Jesus can. Please keep watching over us and never forget me and the love I have for you. I know I will see you again someday, but until then, I will keep celebrating every one of your birthdays because the day you were born was the day that changed my life forever. Happy 1st Birthday, Adam!!!
~Mommy

Here is something that my friend Rebecca wrote for Adam. I think it is beautiful and wanted to share it with everyone.

Psalm for Adam

Your shining eyes we never saw

Your sweet voice we never heard

Your soft breath we never smelled

Your little diapers we never changed

We missed out on so much when you were taken away

Yet God formed you in your mother’s womb (Ps 139:13)

God saw you before you were born (Ps 139:15)

How precious are God’s thoughts about you.

They cannot be numbered (Ps 139:17)

Even the hairs of your head were numbered, you are so precious (Matt 10:30)

Now you are with the alpha and the Omega, the beginning and the end (Rev 1:8)

He holds the keys to death and the grave, so we know you are alive with Him (Rev 1:18).

Now you see the throne in heaven, as bright as gemstones, glowing emerald (Rev 4:3)

You sing to God with the angels “Holy, holy, holy is the Lord God, the Almighty—the one who always was, who is, and who is still to come.” (Rev 4:8).

You sing to Christ “Worthy is the Lamb” (Rev 5:11)

You will be judged and found pure, little one. You will be a priest of God and Christ and will reign a thousand years (Rev 20:6).

Then every tear will be wiped from our eyes, the tears we cry for you (Rev 21:4)

Then we will be together again.

But until then, we will always remember you, beautiful boy.

Happy Birthday Adam

What is normal

2010-10-26T16:14:00.000-04:00

What is " Normal"?

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family's life.

Normal for me is trying to decide what to take to the cemetery for Birthdays, Christmas, Thanksgiving, New Years, Valentine's Day, July 4th and Easter.

Normal is feeling like you know how to act and are more comfortable with a funeral than a wedding or birthday party...yet feeling a stab of pain in your heart when you smell the flowers and see the casket.

Normal is not sleeping very well because a thousand what if's & why didn't I's go through your head constantly.

Normal is reliving that day continuously through your eyes and mind, holding your head to make it go away.

Normal is having the TV on the minute I walk into the house to have noise, because the silence is deafening.

Normal is staring at every baby who looks like he is my baby's age. And then thinking of the age she would be now and not being able to imagine it. Then wondering why it is even important to imagine it, because it will never happen.

Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart.

Normal is telling the story of your child's death as if it were an everyday, commonplace activity, and then seeing the horror in someone's eyes at how awful it sounds. And yet realizing it has become a part of my "normal".

Normal is each year coming up with the difficult task of how to honor your child's memory and her birthday and survive these days. And trying to find the balloon or flag that fit's the occasion. Happy Birthday? Not really.

Normal is having some people afraid to mention my baby.

Normal is making sure that others remember him.

Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.

Normal is weeks, months, and years after the initial shock, the grieving gets worse sometimes, not better.

Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you - it doesn't compare. Losing a parent is horrible, but having to bury your own child is unnatural.

Normal is realizing I do cry everyday.

Normal is disliking jokes about death or funerals, bodies being referred to as cadavers, when you know they were once someone's loved one.

Normal is sitting at the computer crying, sharing how you feel with chat buddies who have also lost a child.

Normal is feeling a common bond with friends on the computer in England, Australia, Canada, the Netherlands and all over the USA, but yet never having met any of them face to face.

Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.

Normal is not listening to people make excuses for God. "God may have done this because..." I love God, I know that my baby is in Heaven, but hearing people trying to think up excuses as to why healthy babies were taken from this earth is not appreciated and makes absolutely no sense to this grieving mother.

Normal is wondering this time whether you are going to say you have three children or two, because you will never see this person again and it is not worth explaining that my baby is in heaven. And yet when you say you have two children to avoid that problem, you feel horrible as if you have betrayed your baby.

Normal is asking God why he took your child's life instead of yours.

Normal is knowing I will never get over this loss, in a day or a million years.

And last of all, Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal".

-author unknown

..

Adam's Birthday

2010-10-09T17:03:00.000-04:00

Adam's 1st birthday is coming up way too soon! It is less than a month away. Steve and I have decided that we just want to have a small celebration with just us and Allison. We will probably make cupcakes, visit the cemetery, sing "Happy Birthday", and release balloons.

It is going to be a tough day and I know not everyone is going to understand why we are even celebrating. Some people are even saying that it really isn't his Birthday. If you are one of those who really don't understand, I want to give you a new outlook on the situation. By definition of the word, a Birthday is the day that one was born. Well, here on Earth or not, Adam was born on October 30th. Thus, October 30th, will always be Adam's Birth Day. And as for the celebrating, well, do you celebrate Jesus' birthday on Christmas? Jesus is no longer alive on earth, in the physical form, but we still celebrate his Birthday every year. And I am pretty sure that school's, government office's and banks close every year for Martin Luther King Jr's Birthday. So, nobody is going to make me feel weird for celebrating my son's birthday.

With all that being said. I know that I am going to be a complete mess for the next few weeks with Adam's upcoming Birthday and also the anniversary of his death. One thing that would bring a smile to my face and a little joy to my heart would be to know that there are other's out there who are thinking of my baby boy. If you have a few minutes and would like to add a name to Adam's name gallery, I would really appreciate it! Here is the link to the names that I have so far. http://adamsname.blogspot.com/ It can be as simple as writing Adam's name on a piece of paper and taking a picture of it or going to the beach and writing it in the sand. Also, if anyone releases balloons for Adam, I would LOVE a picture of the release.

If you are still taking the time to read my blogs, thank you so much for your support! It really means a lot!

If only I could peak into Heaven...

2010-09-03T19:56:00.000-04:00

If only I could take a little peak into Heaven, and see Adam, my heart might not ache so much. I wish I knew more about Heaven so that I would have an idea about what Adam looks like, what he's doing, and what knows about me. Is he still a newborn? A 10 month old baby boy? Or is he an adult? If I could just have an image of him, my mind would be more at ease. What is he really doing in Heaven? Is he playing with my other babies? Is he praising God by singing a beautiful song to him? Does he get to see what I'm doing and watch his big sister grow up? I just have so many questions that I wish I had answers to.

Yesterday, before work, I looked up to the night sky and said to God, "Please, please let me see a shooting star! It's been SO long!" Before I finished the work "long", there it was! A star shooting across the sky. How can that not have been an answered prayer? I am always looking at the stars and praying for a shooting star, but hadn't seen one since December on the cruise. I actually had pretty much given up because I figured that God wanted me to have Faith in Him, and if he always showed me a star when I asked for one, then that wouldn't really be faith. Today marks 10 months since Adam went to Heaven. I think if I hadn't seen that star yesterday, I would be a complete mess today. But I do have a little sense of peace knowing that he is ok.

Name Gallery

2010-08-14T21:41:00.000-04:00

I have decided to start a new blog dedicated just to pictures of Adam's name. Feel free to email me at April.Brightbill@yahoo.com with any pictures that you would like to add. If you would like to view the gallery or read about why I have started it, please visit my new site at http://www.adamsname.blogspot.com/.

Dad's Hurt Too

2010-08-14T15:03:00.000-04:00

I found a poem on FaceBook that I wanted to share. It really is true and I think most of the time, people do forget that it is not just mother's that feel the pain from losing their child.

Dads Hurt Too
People don't always see the tears a dad cries,

His heart is broken too when his child dies.
He tries to hold it together and be strong, Even though his world's gone wrong.
He holds his wife as her tears fall, Comforts her through it all,
He goes through his day doing what he's supposed to do,
But a piece of his heart has been ripped away too.
So when he's alone he lets out his pain,
And his tears come like falling rain,
His world has crashed in around him,
And a world that was once bright has gone dim.
He feels he has to be strong for others, But Dads hurt too,
not just the Mothers, He searches for answers but none are to be found,
He hides behind a mask when he is feeling down.
He smiles through his tears,
He struggles and holds in his fears,
But what you see on the outside is not always real,
Men don't always show how they really feel.
So I'd like to ask a favor of you,
The next time you see a mother hurting over the loss of her child,
please remember.....a Dad hurts too

Written by author unknown

I love you, Stephen and I know that you are hurting too!

And again...

2010-08-07T14:21:00.000-04:00

I am starting to feel like a broken record. I miss Adam. I miss him so much, I would give anything to hold him again. To kiss his little forehead, to hold him in my arms and tell him again how much I love him.

Here is a poem that I found that I really like

A million times I've missed you, a million times I've cried.

If love alone could have saved you, you never would have died.
To some you are forgotten, to others just part of the past;
but to me who loved and lost you, your love will always last.
It broke my heart to lose you, you didn't go alone,
for part of me went with you the day the angels called you home.
For things on earth don't matter, but now I feel so alone,
My heart will always be broken, my life will never be whole.
We might be parted for awhile, but our hearts will always be together
for one day soon we will hold hands again forever.

~Unknown

Sometimes I feel like some people are waiting for me to "get over it". Guess what? It's NOT going to happen. If that's what you are waiting on, then maybe you should just move on. Nobody is forcing you to read my blog, you can always "hide" my Facebook status updates. This grieving that I am doing is going to last a lifetime and if it is too much for you to handle, if I make you uncomfortable, try to put yourself in my shoes and think about how I feel...

And to everyone else, thank you for your support and dealing with my moodiness, frequent teary eyes and saddness!

Happy 8 mths in Heaven, baby boy!

2010-07-03T09:47:00.000-04:00

I can't believe that it has already been 8 months!! It really feels like this all happened just last week. Some days I am ok. I know Adam is in a better place and it is selfish to wish he was here suffering. Other days I just don't understand. I feel like a brat, kicking and screaming inside because I did not get my way. I am starting to wonder if a week will ever go by that I don't cry. I am sick of crying! I try to hide it as best as I can, mostly from Allison. She is so smart, when she sees me crying, she asks if I am ok and hugs and kisses me and then asks if I miss Adam.

Whenever I hear that another baby has passed, it always brings back the same emotions and my heart literally aches for the family. Until this happened to me, I had no idea that there was a whole baby loss community out there. I have met so many wonderful women who have lost their babies. We understand eachother and they are such a good support system for me!

Adam,
No matter if it has been 8 months, 8 years or 80 years, as long as you are in Heaven and I am on Earth, I will miss you with all of my heart!! I will always have a place in my heart for you and not a day will go by that I don't think of you. I love you baby boy!

Love,
Mommy

Remembering Adam at Disney

2010-06-15T19:52:00.000-04:00

Last year when I was pregnant with Adam, I won a vacation to Disney World for 2 adults and 2 children. Because I was having so many problems with the pregnancy, we booked the trip for June of this year. This way, we would be going for Allison's 3rd birthday and it would give Adam the best chance of going with us. June finally came and we got to go on our vacation, but we were missing one of our children...
I knew it was going to be hard to take this trip, but at the same time I was so excited to take Allison, and of course, I love Disney myself. But I was not prepared for how I was going to feel when I checked into the hotel and had to admit to the staff that my son was not there. They had room keys with each of our names printed on them. When I told them that Adam was not there, they kept his key. I hadn't told them why he wasn't there, just that he wasn't going to be joining us. When I got to the car and told Steve about what happened, I was crying and heart broken. He went back in and they gave him the key card. Now I have something else that says my son's beautiful name on it! Just more proof that he was really here.

Anyway, once I pulled myself together I was able to enjoy the trip with Allison and remember Adam while we were there. I bought him a Mickey hat with his name stitched on the back. He was supposed to be on this trip and I had to buy a souvenir for him! I took the hat and placed it on a sign outside of the store and got a great picture of his name in front of the Castle.

As much as I would have loved to have Adam experience Disney World with us, I just try to remember that being in Heaven has to be like being at Disney everyday, for all eternity. (actually, I'm sure it's better than Disney)

The results are in...

2010-04-22T17:35:00.000-04:00

We got Adam's autopsy results in the mail today, finally after 5 1/2 months. I have shared so much personal information on here, but I think I am going to keep most of the details limited to just family and close friends. I will say that Adam did have a Congenital Heart Defect, it just wasn't the defect that the dr's thought it was. He also did have mulitcystic kidneys due to a urinary outlet obstruction.

No matter how many birth "defects" Adam had, he is still perfect in every way in my eyes!! After seeing these results, I will admit that God spared my son from what could have been a very tough life and allowed him to enjoy peace and happiness in Heaven for all eternity and I will thank him for that every day for the rest of my life!!

A Letter to my Little Star....

2010-04-20T19:57:00.000-04:00

Adam,
It has been more than 5 1/2 months since you went to Heaven and I don't think I will ever stop missing you. Sometimes, I just sit and think about you. I remember how you used to hiccup quite often and kick my left side with your little heels so hard that it would really hurt. I remember sitting in the shower rubbing my belly just sitting there waiting for even the slightest little nudge from you so that I knew you were ok. I remember how scared I was during your surgery when I was still pregnant and your heart rate started to drop and they had to quickly bring you back. I had just gotten used to the idea that you were a boy and I just wanted to start sobbing in the middle of the surgery because I thought I was losing my baby boy right then.

I feel like I was so scared about how your little life would turn out that I did not allow myself to enjoy you growing inside of me. I wish I would have talked to you more. I wish I would have had maternity pictures taken. Actually, I have a few thanks to your Aunt Jenn for making me take some while we were at the pumpkin patch about a week before you decided you were done being squished inside my belly and wanted out to stretch.

I think about how scared I was during your delivery when you came out without crying. Nobody was telling us if you were even alive. I was hoping so much that your lungs would have grown enough so that you would be able to breath by yourself and wouldn't need to have that awful tube down your throat. But they were so small and stiff, you couldn't even cry. How would I have liked to hear just a little cry or whimper from you, or see you move, even if it was just moving a little toe.

And many times, I think back to what really turns out to be the best day of your short life, the day Jesus brought you to Heaven. I don't know how I managed to run to you so fast after having surgery just 4 days before. I think God temporarily numbed the pain for me so I could get to you. But when me and daddy got there, it was too late. You were already gone. You looked so pale and exhausted. But God had taken you and relieved you from anymore suffering. How nice it was to feel you in my arms. I am also very lucky to have had professional pictures of you that are hung up all over the house. Nobody will ever be able to come over and not know who you are!

These past few months have been really hard. But I am starting to accept that you are gone and I am going to have to be patient to wait my turn to go to Heaven and get to know you. I constantly look up at the stars and think of you. I pray all the time for a shooting star, but haven't seen one since the cruise, maybe you could ask God to give me one more? I go often to "check on your things", as your big sister Allison calls it. She misses you so much too! Sometimes she pretends to carry you around and play with you. She says that she sees you sometimes too. It really makes me wonder if she really does. Baby, mommy would like to see you too! The other day, I couldn't get to sleep so I just closed my eyes and pretended that you were lying next to me sleeping like Allison used to do. I probably had the most peaceful sleep that I have had in a long time.

Most of all Adam, I just want you to know how much mommy loves and misses you. I wish I could see what you were doing. Lately I have just been feeling more at peace, I feel like you really are ok and happy, happier than I ever could have made you here.

There was a time not too long ago, that I just wanted to give up on life. Then I heard this wonderful song that has really inspired me to keep going and know that I can overcome anything with the help of God.

Britt Nicole- "Walk on Water"
I love you, Adam!! I will never forget you and you will always be my son and a part of this family!!!

Getting Impatient

2010-03-23T20:30:00.003-04:00

It has been almost 5 months since Adam went to Heaven. On the day he left us, the neonatologist urged us to get an autopsy done so we could try to find out why Adam had all of his issues. My initial reaction was "No!". I did not want them cutting into my baby. Then he started explaining that it would help us know if there was a genetic problem and it would be helpful for Allison when she got older. So I went ahead and signed the consent. He said it would take 1-2 months to get results. We STILL don't have results. At first, Steve was calling weekly, then twice weekly. Now the girls that answer the phone know him and say that they are checking for him daily. Technically, they only had 90 days to get us the results. He did actually speak to the pathologist a few weeks ago and he said it would be a week and a half. That week and a half has come and gone...

I am getting so impatient! I need these results to get more closure. I feel like there is still something hanging over my head. I can't understand what could possibly be taking so long. I will say that if they lost any of the samples or results, they will not know what hit them because I will be driving up to St.Pete and taking all of my anger and frustration out on somebody!!!

I have now just passed the anniversary of finding out that I was pregnant with Adam. I know the coming months are going to be extra hard because I am going to be remembering that this time last year I was pregnant and playing back in my head all the milestones and heartaches...

"Just the Same"

2010-03-07T19:12:00.002-05:00

My parents bought us a plaque that has a beautiful poem on it and I wanted to share it with everyone.

"Just the Same" by Anne Peterson

I never got to hold you and bounce you on my lap,
I never got to read to you or watch you as you nap.
You slipped away so quickly, before I said your name.
And yet I want the world to know I love you just the same.

It's been awhile....

2010-03-05T15:06:00.004-05:00

I didn't write a post at all last month, mainly because it was the worst month that I have had since losing Adam. It started out with a patient of mine dying on my second day off of orientation and ending with me quitting my job. I am feeling so lost and confused. I just don't know what direction I am supposed to be taking from here.

I honestly think in the last month, I could have written a separate blog everyday. And each one probably would have contradicted the one before. This roller coaster ride of grief has so many ups and downs, and I never know what way I am heading. I can be feeling a little down, and then I can either start to feel better or worse. I never know what's coming.

I feel like I have become "the one whose baby died", or the "one who has lost her mind and constantly grieves for her son". And these things are probably true. I need to try to get a handle on my life again and become the person I want to be. It is just SO hard. I just wish there was a new medical break-through that could heal a broken heart. I never knew that a broken heart could physically hurt so bad. It just aches as if it literally was broken. There is a continuous lump in the throat, you know the "lump" you feel before you break down and cry? It doesn't go away.

I had this wonderful idea that I wanted to arrange a 5K run to raise money for a Memorial Fund that I was going to set up in Adam's name to help pay for funeral costs for those who lose a baby or small child. I have this image of how wonderful it would be to help others and keep Adam's name alive. Then I kinda "lost it" again and realized that I have no idea how to start something like this and the stress would just be too much on me right now. I do hope to one day make this dream of mine come true, but I think my mental sanity is a little more important right now.

I got Adam's birth certificate today. I have been putting off going for awhile now. I wasn't real sure why until after I got it today. It is a beautiful certificate. It isn't plain like the one they gave us for Allison. Then, if you look in the right hand corner, you see the word, "deceased". Ouch. That hurts. Yes, I know my son is deceased. I have a death certificate that tells me that. Couldn't they have allowed me to have a birth certificate that tells me about his birth, his life and leave his death out of it? After I got it, I was kind of lost. I didn't have Allison with me, which almost never happens unless I am at a Dr's appt. I walked around Target, not real sure what to do with myself.

I know this post has kind of been all over the place. But so are my thoughts. I don't think I have asked for any prayer requests since Adam passed away. Part of me thought, "Well praying for Adam didn't work, so whats the point?" In reality, praying for Adam did work. God answered almost every prayer I asked him for Adam. I got to see him alive, got to hold him, and God took Adam to Heaven and healed him before I ever had to see him suffer and make the choice to end his life on my terms. Now I am asking for more prayers, this time for me and Steve. Please pray that we can come to peace with all of this and try to continue with our lives, so that we can give Allison the best life possible. Pray, that I get the job that God wants me to have, one that I can handle emotionally and physically. I feel so broken, please ask God to just get me through this tough time and become the person I am supposed to be...

Faith Like a Child

2010-01-30T20:28:00.003-05:00

Allison was playing with her stuffed bunny today that plays, "Jesus Loves Me". She was singing and dancing and just overall very happy. And it really got me to thinking. Here is a 2 year old who is still trying to figure out the world. For months she was told that she was going to have a little brother. He was going to come out of mommy's belly and play with her. She used to talk to him and whisper to my belly. And I know he heard her because everytime she would talk to him, he would kick. Adam loved to hear his big sister.

She was then told that Adam was born but was very sick and she couldn't see him yet. 4 days later I had to explain to her that Adam went to Heaven to be with Jesus. Honestly, other than singing, "Jesus Loves Me", I never really talked to her about Jesus or God. I didn't know where to begin. I didn't know how to explain to her about someone that she couldn't see. I just didn't think she would understand.

After we talked, she did seem to understand, in her own way. She always tells me that Adam is in Heaven with Jesus and one day Jesus will take her to Heaven too. She loves any song that talks about Jesus and asks quite often to hear a select few.

I wish I had faith like her. If I really didn't understand the concept of God and Jesus and one day I was told that this "Jesus" man took my brother to Heaven and I couldn't go see him, I think I would come to hate this person they call "Jesus". I would be downright angry! Luckily, I do understand. And luckily Allison has fallen in love with Jesus. She isn't made at him at all for taking Adam. She understands that He was the only one able to fix her brother and make him better. She knows that one day she will be able to go to Heaven with Adam and Jesus.

Even with my understanding and relationship with God, I will admit that many times I am mad. I am frustrated. I don't understand why this had to happen to Adam. Why this had to happen to me and my family. There are so many women getting pregnant everyday with healthy babies that they don't want and they abort them, put them up for adoption or just neglect them so that these children don't know what love is. There are women who are terminating their babies because they aren't perfect, because they have down syndrome or another birth defect that is not fatal. What I would give to have Adam here with down syndrome or another problem that could be medically treated. I just don't get it.

I think I need to learn a lesson from Allison and just trust in God, believe that he knows what is best for Adam and my family and stop questioning why. One day, when it is my turn to go to Heaven, I will have all my questions answered and will surely thank God for giving me Adam and for taking him away. Until then, I just need to have faith like a child....

Need to clarify...

2010-01-20T15:34:00.002-05:00

I guess I wasn't very clear in my blog last night when I said that I didn't see the point of living on this earth anymore. The truth is, I don't. But I also don't have a choice in the matter. I am here until God is ready to take me Home. I am frustrated with how the world is, but I am also making the best of it. I don't have dreams for myself of buying a lot of possessions, they're just "things". I don't exactly like being a nurse, but I know in the big scheme of things, it's only temporary. I think when you really get to know grief and feel real pain, the smaller things in life just seem so insignificant. I don't care what other people think anymore. Sometimes when people get upset over little things, I just want to roll my eyes because it's just so unimportant when you really think about it.

I think losing Adam has actually made me a better mother and wife. I have gotten much closer to Steve, our relationship has definetly has really grown. And I really do think I am a better mother to Allison. I get much more joy out of watching her grow up then I have in a long time. Right now, the only thing I am excited about is taking Allison to Disney World for her 3rd birthday. We even have a calendar that we have been counting down the days for it. I really don't know who's more excited, me or her.

Sorry if I made it seem like I had given up on life because that's not the case. This world just sucks and I am over it. While I may not be "living MY life to the fullest", I am trying to allow Allison to experience as much of the world as she can and am enjoying watching her do it. Maybe someday I will begin to love living again but right now this is the new me and I am doing the best I can...

Guilt

2010-01-19T22:34:00.004-05:00

Lately I have been feeling a lot of guilt over things that I regret. I feel so guilty for not enjoying my pregnancy with Adam more. I did not talk to him like I did Allison. I did not tell him enough that I loved him. He couldn't kick a lot because he didn't have much fluid but that doesn't mean that he couldn't feel it when I rubbed my belly. Why didn't I do it more? I was so sad most of my pregnancy that I just didn't take the time out to enjoy the life growing inside me. I never wanted a picture of my belly. I hate how I look pregnant, but I really wish I would have taken more. And now that I think back, Adam heard all of the things that I was saying when I was upset. He heard me crying. He could hear it when the doctors kept telling me how "grim" of a situation this was. Did he feel my anxiety and fear? I love him so much and I hope through everything, he was able to sense that.

Another thing that I feel guilty about is how I handled things after Adam was born. I did not spend enough time with him while he was in the NICU. I only talked to him once while he was in there and it happened to be the night before he died. 2 days after he was born, Steve wanted go in with me to see him and I told him I didn't want to go right then because I wanted to finish watching the Nascar race that was on. What kind of mother am I? Choosing Nascar over my son?? I will never be able to watch a Nascar Race from Talladega again without feeling horrible about myself. I never went down to see him during the night or even before I showered. Looking back, I just don't understand what was going through my mind. I knew there was a good chance that I wasn't going to have much time with Adam, but I kept putting myself first.

I also feel guilty about how I felt after he died. I don't do good with dead bodies at all. At work, I haven't had too much experience with dying patients yet. The one time I did have a patient die , somebody used my scissors to cut something off of him and those scissors went straight in the trash. I just always thought that if it was my baby, that I would do better than I did. I couldn't bathe Adam. I couldn't dress him. I had the nurse do it while we left for awhile because I just couldn't. That was my only chance to give Adam a bath or get him dressed and I passed on it.

I have read a lot of other women's blogs that have lost their babies too and most of them say that having their babies die has given them a new perspective on life. They are able to appreciate the little things in life and want to live life to the fullest. I feel really guilty that I just do not feel the same way. I don't enjoy this life on earth anymore. I have no desire to be here anymore. Why spend my time here with pain and suffering when I can go to Heaven and be with my little boy and his miscarried siblings and know what true happiness is? I am not suicidal or anything, so don't worry about that. I could never purposely leave Allison here without me, that would be the ultimate selfish act. But instead of dreaming about my future here, I prefer to dream about the day when I finally get to Heaven and be with the rest of my family. The things here just seem so petty compared to the rewards I will have there. I guess I am just able to see the bigger picture of what this life is really about. I am just hoping that Jesus returns to take all of us believers back to Heaven with him sooner than later!!

Back to Work

2010-01-13T14:39:00.002-05:00

I went back to work last week. I am working in the same hospital but on a different unit with patients that are a little different than what I am used to. I have a lot to learn. The first couple days were pretty rough. I cried the whole way to work and the whole way home. I even had to hide in the bathroom a couple times to wipe my tears. The first day it was very surreal. I couldn't believe that it was actually happening. I was back to work. It was another step in moving on. A hard step. I saw some people who knew about Adam and would ask how I was. I saw people who knew I was pregnant, but didn't know the outcome and I would have to tell them what happened. And I saw people that didn't even remember I was pregnant and had no idea how much I was hurting. No matter how much knowledge anybody had about me and Adam it hurt to talk about it. But it also felt nice. I don't know if that makes any sense. I guess it just brought back lots of emotions that I wasn't prepared to deal with while I was working. But it felt nice to hear my sons name and think about him.

I was out of work for 4 months and a lot of people asked where I had been. I didn't want to have to explain the whole situation to everyone I saw because that would be too painful and I didn't want people to think that I was just telling them because I wanted sympathy. Without really preparing myself, I just started telling the majority of people that I was out on leave. When the time is right I will tell the people that really matter. I just don't feel like it is necessary to open up to those people that I am simply on a first name basis with and just say "Hi" to while passing in the hallway. I do feel some guilt about not telling the whole world about Adam. If I am asked or if it seems appropriate, of course will not deny my son. But I think he probably forgives me for how I am handling this situation. I am doing the best I can to work again and help provide for my family.

This week, I am feeling better. Last week I was falling apart again. I was sad, depressed, angry and just wanted to die. I thought I had moved passed these feelings. I thought I was doing better and handling this alright. I think going back to work was just very hard on me because it was moving another step away from Adam. The hospital I am working in, is the same hospital that I was transferred from when I went into labor with Adam. If Adam had died in this hospital, there is no way I would ever be able to work there again. It is hard enough when I go there. I remember being taken away in the helicopter, I remember the countless dr appts that I went to there, it is the place I received the news of how bad his condition was, the place I had the amnio, the place I found out he was a boy and not a girl like we originally thought. There are just so many painful memories there, but I am working through it all and doing my best.

Goodbye 2009

2010-01-04T14:30:00.003-05:00

Goodbye 2009. What an awful year it was and it is a year I will never forget! I said in my last post that I really was having trouble leaving 2009. It was the year I got pregnant with Adam, the year I lost his twin, the year God gave me 4 days to spend with Adam on earth and the year God took Adam to Heaven. As horrible as it was, I would go through it all again, just to have that chance to see my baby boy. I would go through the amnio, the two bladder taps where the doctor inserted a needle through me to get to Adam's urine, the awful surgery to place a shunt into his bladder, the 5x /week dr appts, the numerous trips to Miami and St.Pete, the helicopter ride to St.Pete, the 24 hours of labor before the csection, the csection where my blood pressure kept dropping and I kept almost passing out, the csection scar that I will always have with me, the running from the Ronald McDonald House 4 days after my surgery to get to Adam after we received the dreaded call, walking in to see my lifeless boy lying there with so many people standing around him, the planning of the funeral.... I would go through it all again if given the choice just to have those 4 days and the forever memories with my son.

Despite all of this, I think I had the best New Years Eve I have had in a long time. Steve, Allison and I went to Chili's for dinner. I think I am becoming addicted to that place thanks to a couple gift cards. When we came home, me and Allison stood outside and watched fireworks that people in the area were putting off. They were nothing compared to the professional ones, but Allison didn't know the difference and it was just wonderful to see her face light up as she watched them in the sky. After Allison went to bed, me and Steve stayed up and watched New Year's Rockin Eve. The closer it got to midnight, the harder it was to hold back the tears. I hated 2009, but I didn't want to leave it. I didn't want to leave Adam in 2009 while I moved on with my life in 2010. We sat and watched the clock count down. Tears began to flow. I couldn't stop it. Then we watched the ball drop and with salty tears running down my face, I received a midnight kiss from the best husband in the world. Then he held me and just let me cry. I don't think he really understood why I was so upset, and I'm sure many of you don't either, but he just let me cry and listened to me talk and we both just thought about our precious son. It was a sad New Year's Eve, but I really enjoyed spending it with Steve and Allison.

Now we are moving on into 2010. I really hope this is a much better year. I want to try to be a better mother to Allison and a better wife to Steve. I want to try to get my act together and become the person that I want to be. I want to do something meaningful in Adam's name. When I come up with the perfect idea of what that is, I will let you know.

Goodbye 2009, you will never be forgotten...

Pictures

2009-12-29T17:20:00.002-05:00

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 Christmas...next, the New Year

2009-12-29T16:38:00.002-05:00

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...

My First Christmas with Jesus

2009-12-19T20:32:00.004-05:00

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

Peace and Shooting Stars

2009-12-17T21:43:00.002-05:00

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"...

Adam is certainly a part of our Christmas!

2009-12-08T21:14:00.008-05:00

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.

One month

2009-12-03T12:26:00.002-05:00

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.

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

2009-11-22T09:15:00.005-05:00

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 failure...how 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!

Homesick

2009-11-15T09:40:00.002-05:00

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.

I miss my baby boy!

2009-11-07T18:12:00.005-05:00

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.

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

2009-11-03T20:33:00.002-05:00

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.

Adam decided to make an early appearance!

2009-10-31T21:22:00.002-04:00

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.

Almost there...

2009-10-28T14:29:00.002-04:00

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!

A Marathon of Dr appts

2009-10-14T16:10:00.002-04:00

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!

It's in God's hands now

2009-09-30T13:16:00.003-04:00

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"...

Overnight Hospital Stay

2009-09-28T18:32:00.003-04:00

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!!

Things are starting to move along

2009-09-23T19:34:00.002-04:00

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.

Quick Update...I love my OB Dr!

2009-09-18T11:07:00.002-04:00

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.

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

2009-09-17T16:48:00.003-04:00

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.

Pediatric Cardiologist Appt

2009-09-15T15:48:00.002-04:00

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!

Here we go again...

2009-09-13T14:53:00.003-04:00

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.

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

2009-09-06T17:01:00.002-04:00

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

Had a couple scares...

2009-09-02T14:25:00.003-04:00

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.

Another weekly appt....

2009-08-20T10:27:00.002-04:00

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!

More of the same good news!

2009-08-13T08:46:00.002-04:00

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!

Wonderful Appt today!!

2009-08-10T20:06:00.002-04:00

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.

SO happy that today is over with!

2009-08-04T19:43:00.003-04:00

Today was the big surgery day. The day started out early, got up at 3:55am so that I could be showered and ready to be in the pre-op area by 6am. We got out of the hotel in time and made it to the hospital by 5:30am. Once we made it to admitting, we were told that they weren't in yet, but could stay in the waiting room until 6 when the woman would arrive to admit us. I was a little annoyed because I was supposed to be in the pre-op area at 6 and how could I be there if I was in admitting at 6??
Anyway, made it to pre-op about 6:15, got changed into a gown and the nurse put an IV in. This was the worst IV experience I have ever had. The lady put an 18 gauge into a vein that I didn't even think would hold a 20! It throbbed for about 3 hrs then started to feel better and I figured that having a painful IV was probably the least of my worries. At about 8 the nurse let me know that I was going to be the 2nd case for the Dr instead of the 1st so it might be awhile. Finally at about 1130 the Dr came in and everything was set for me to head into the OR.
The OR experience was awful! I knew I was going to be mostly awake for the procedure, but since they were giving me fentanyl and diprivan I thought I would at least be "out of it". No such luck, I was WIDE awake the entire time. The only thing that saved my from the pain was the lidocaine that the Dr injected into me stomach before making the incision. I think he must have injected it deep enough so that I didn't feel everything that he was doing, but I certainly felt enough to know that it hurt! They also put a drape covering my head so that I didn't see what they were doing, but the drape was so close to my face, I really made me feel claustrophobic!
Adam decided that he was not going to turn from his awful breech, right side up position, so the first thing the Dr had to do was try to manually turn him. This wasn't too bad, mostly just a lot of pressure. Then he made the incision into me abdomen and from here I don't really know too many details of what he did because there was a big drape in front of my face! I do know that he was able to successfully place a shunt into the bladder. After he did that I started having contractions and they had to give me terbutiline to stop them. During the contractions, the cord was getting compressed and Adam's heart rate was dropping dramatically. In order to stop the cord compression the Dr added some amniotic fluid and then turned me on my side. Not real sure what else he had to do to get the heart rate back up, but I felt him pushing a lot on my stomach and then after surgery he said that they had to "resuscitate" Adam. I was pretty scared for awhile thinking that I was losing my little boy, but his heart rate came back up and then they sent me to recovery.
It took a couple hours after the surgery for me to feel any movement and I was getting worried but then Adam decided to kick and let me know he was still there. I was told that I was going to have to stay the night in the hospital to monitor contractions, but instead was discharged because I am only 22 weeks 4 days and they don't consider a baby to be viable until 24 weeks so even if I went into labor, they would not be able to help him at all. That really upsets me because although I know they couldn't revive him, I would at least think that if the contractions started again they could stop them and keep him in a little longer.
I go back to Miami next week to check on the shunt, the fluid and most importantly my baby and am praying that everything looks good so I don't have to go through this again!

Surgery in the AM!!

2009-08-03T18:43:00.002-04:00

Surgery is scheduled for tmrw!! Had an ultrasound today and the bladder looked to be full again, so there is a chance that there is at least one kidney working! The Dr is going to try to place a shunt in Adam's bladder and right kidney. About 50% of the time the shunts come out of the bladder and then the procedure has to be repeated. The Dr thinks that it is the right kidney that is functioning, surprisingly, this is the kidney that "burst" last week. With putting the shunt in the kidney, if the Dr has chosen the kidney that is functioning, there is less of a chance of that coming out and having to go through all of this again. If the Dr has chosen the kidney that is not functioning and the bladder shunt comes out, then we will have to have the surgery repeated.
Over the weekend, I was sure that I had no amniotic fluid left because I was hardly feeling any movement. While the fluid is still low, its not much lower than it was last Monday. This is such good news because that means that his lungs have still been able to develop over the past week.
Last week, Adam was in such a perfect position for surgery because he was head down and his left side was up. The Dr liked when he was like this because Adam is missing the left umbilical artery and if he can go into the bladder from the left side, then it really decreased the chances of hitting the artery and killing my baby! Well, sometime since last Wednesday, Adam decided to do a flip and is now breech with his right side up!! The ultrasound tech was pretty amazed that he was able to completely turn around with such little room due to the low amniotic fluid. Its just another hurdle that we're going to have to jump to have a successful surgery. Going to be spending the evening praying and trying to talk Adam into turning around. If by morning, he has not turned yet, then the Dr will try to manually turn him during the surgery.
We didn't mention anything about the complete echocardiogram results today because we didn't want to remind the Dr that there is something else wrong with our little boy and have him change his mind about the surgery.
Have to be at the hospital VERY early, will have Steve update tmrw after surgery! Please send all your prayers this way!!

Surgery Mon or Tues!!

2009-07-29T19:25:00.002-04:00

Didn't have the surgery today because the first set of urine results they took on Monday came back too high for surgery so they had to repeat the procedure today. The second sample also came back high but the Dr said we are still a candidate for surgery because he thinks that one of the kidneys has failed and is causing the results to be inaccurate. I will come back to Miami on Monday or Tuesday for the surgery! The Dr said that he can either place a shunt in the bladder or the kidney. The problem with placing a shunt in the kidney is that if he picks the bad kidney to shunt (since there's no way to tell which one is good and which one is bad w/o taking urine straight from the kidney) then we haven't helped Adam at all. From his experience he thinks the right kidney that ruptured is going to be the better of the two, but there is no guarantee. So we'll probably just shunt the bladder like previously planned and hope for the best.

Possible Surgery on Wednesday

2009-07-27T17:32:00.002-04:00

Had another appt in Miami today, didn't go as well as I had hoped.
The good news is, the cardiologist looked at the echocardiogram of the heart and told the ultrasound tech that he does not consider it to be hypoplastic left heart syndrome! The ultrasound tech told us last week that she didn't think it was either, but it really helps that the cardiologist agrees. There still is a problem with the heart, but they don't think its so severe to label it "hypoplastic".
The bad news is that the kidneys have gotten worse and the amniotic fluid is very low. The right kidney "ruptured" because it was so full. This causes all of the urine in it to be released into the abdominal cavity. But the Dr said that after kidneys rupture, they regenerate and then are usually the better of the 2 kidneys. The left kidney looked fine last ultrasound but is now starting to fill with fluid.
The dr decided that it was time to intervene and do surgery, but first he needs to see there's still some kidney function. To do this, its like an amniocentesis procedure. They stick a needle in my abdomen, through the placenta to go through the baby's bladder and remove urine to be tested. They did this today and we will get the results back tmrw. If there is kidney function, then we will proceed with surgery on Wednesday to place a shunt to continually drain the bladder. If there isn't any kidney function then they will take another sample on Wednesday and if that comes back good then we will have surgery Friday or Monday. If there still isn't any kidney function then there isn't anymore that they can do for us because that means that the kidneys have stopped working completely.
Please continue to pray for my baby boy Adam!

The final amnio results are in...

2009-07-21T16:43:00.002-04:00

I got the final amnio results today and there are NO chromosomal abnormalities!! But Kylie is a BOY and not a GIRL! We had an ultrasound at 15 weeks and we were told that it was 100% girl. It even looked like a girl to me, but its def. a boy. Nobody else has gotten a good look between the legs since then but the glimpses that everyone has seen, they have all agreed girl. So we're not real sure whats going on "down there".
I really shouldn't be surprised because until we had the ultrasound that told us "girl" I was positive it was a boy. I even told my mom that I didn't need an ultrasound to tell me because I was so sure. Well, looks like my motherly instincts were indeed right.
There could be problems with the genitals if they are not looking like they should but we won't know anything until another sonographer is able to get a good look. I am concerned about this but its not life threatening and its more important to focus on the heart and bladder right now.
The good news, I don't have to go back to the Maternal Fetal Medicine dr here anymore. He said that if they were going to follow me in Miami, then I could just go there for everything. I go back to Miami on Monday and they will take another look at the bladder and kidneys and I will have another fetal echo. I think he will probably also refer me to a pediatric cardiologist in Miami instead of going to St.Petersburg like we had originally planned, this way, everything is at least in 1 city.
Steve and I have to talk and decide what we want to name the baby now. Its probably either going to be Kyle Stephen or Adam Stephen, unless we throw a new name in the mix.

NO Surgery, as of right now!

2009-07-16T20:06:00.003-04:00

I am in Miami right now and have had a very long day at the hospital with the ultrasound and the consultation with the dr. We got pretty good news, the dr does not believe the Kylie needs surgery right now. Her bladder is still very full, but she still has enough amniotic fluid to develop her lungs. She has a lot of hydronephrosis (swelling) on her right kidney but the left one looks fine! He thinks that she has a partial urinary blockage that is not allowing her to completely empty her bladder, but since he could see it contracting, he does think that she is emptying it a little, which is allowing her to have some of her amniotic fluid. We are not out of the woods yet, he said that there is something wrong here, but he thinks it would be better to have weekly ultrasounds with him than to jump in and do surgery. I am so relieved to not have to go through the surgery right now. It might be something that I have to do in the future, but I can try to relax now.
The ultrasound tech also does not think her heart is as bad as we had once thought. The left side is definetly smaller, but she would not classify it as being "hypoplastic" yet. She talked to the Dr and wants an echo done with him during my next visit. So overall it was a good visit and I hope that we get better news with each appt!

Got the call!!!

2009-07-15T17:52:00.002-04:00

After a big insurance mess, finally received the news that they have made an appt for me tmrw in Miami for a consultation with the Dr! Plan is that I will have the consultation tmrw, then surgery on Friday, spend 1 night in the hospital, 1 night in the hotel so that I am close by if there are any complications then head back home for some bedrest! The surgery that we are supposed to be having done, is the surgery to drain her bladder. So excited but scared and hate the idea of leaving Allison for that long! But it will all be worth it to save Kylie's life! Thanks for everyone's support! I will update when we get back.

Preliminary Amnio Results

2009-07-10T16:19:00.003-04:00

The Dr's office just called and the preliminary amnio results came back normal! They are about 97% accurate. The final results will probably not come back until next week or the week after, but the specialist in Miami has enough faith in these results that he is willing to see us. Steve just talked to them and they said to be on stand-by to come down for a consultation, it probably won't be until Monday though. Hopefully after the consultation, he will be able to drain her bladder, helping her kidneys function, her lungs develop and help replenish the amniotic fluid! This is the best news we have received in a long time! Thanks for all the prayers and please continue to pray for us. We are going to have a long road ahead of us!

From the beginning

2009-07-09T10:59:00.000-04:00

With so much happening lately, it has become quite exhausting to call or email everyone with updates so I have decided to start a blog that will allow everyone easy access to the latest on whats happening with my pregnancy with Kylie.

I will start from the beginning to give some background. Steve and I had been trying to get pregnant again since Sept 08, we had no luck getting a baby to stick. Finally after 2 mc's (one being very early) and a d&c, 2 months to let my body recuperate and 1 month w/o luck, I found out I was pregnant again on March 23rd. My Dr knew how nervous I was and allowed me to come in very early for blood tests and as soon as those came back high enough, we scheduled an ultrasound. During the ultrasound we had quite a surprise, there were 2 babies with 2 heartbeats growing in there!! I was so shocked and overwhelmed but it only took a couple days for me to start to become very excited to have 2 new babies! A week later after some concerning symptoms I had another ultrasound that showed that 1 of the babies had stopped developing. I was upset and disappointed but was able to move on knowing that I still had one baby that seemed to be doing great!

We ended up getting 3 more ultrasounds that showed that everything was fine with this baby. I started to relax and feel more comfortable with this pregnancy. On June 12th we went to Sneak Preview 4d and were told that we were having a baby girl. We had already had the name picked out and from then on, our baby was called Kylie Anne.

2 weeks later I went in for a routine appt and had a follow-up ultrasound that did not come out like I had planned. Although after I lost the twin, I kept having this feeling that something was wrong with the baby, I brushed it off because all the US's were showing that everything was fine. It really caught me off guard when my Dr said that he would be referring me to a Maternal Fetal Medicine Dr for further work-up. The ultrasound that they had done that day showed that Kylie's aorta was too small, her bladder was not emptying, she had cysts on her kidneys and she had only had 1 artery in her umbilical cord instead of the 2 that she should have.

We went to the MFM (Maternal Fetal Medicine) Dr and they confirmed what we had already been told. They also said that the whole left side of her heart is to small. The Dr I saw that day did not think that anything could be done to help Kylie. She mentioned terminating the pregnancy because of the severe birth defects that she will have. I could not even consider this. God has allowed me to get pregnant with this baby for a reason. If she is meant to die, then it will be on his watch, not mine!

Later on that night after my appt , the Dr called me at 6:30pm to tell me that my trisomy 18 results were elevated. I thought she said that I had a 1.3% chance of Kylie having this. (Later on I learn that's its more like 1 in 3, much higher of a percentage). Trisomy 18 is a chromosomal abnormality that Dr's say is not compatible with life. 90% of babies with this are still born. These that are born, 90% die within the 1st month, then 90% die within the 2nd month and so on. While there is a very small chance that if she does have this, she could live for a short amount of time, she has heart and kidney problems that need surgery if she had any chance of living. Dr's will not do any type of surgery on trisomy 18 babies because they assume that they are going to die anyway.

I decided that Kylie did not have this and worked on finding a Dr who would drain her bladder so that her kidneys could stay functional and her lungs could develop. ( Lungs cannot develop if there isn't enough amniotic fluid and all of her amniotic fluid is in her bladder since she swallows it and then can't urinate it back out). I found a Dr in Miami that is an expert on this type of thing. Steve and I worked on making phone calls to make this happen. Finally on Monday July 5th, the office called and said that he reviewed the case and believes that he can help Kylie, but he wants me to have an amniocentesis first to rule out trisomy 18.

Yesterday, I had my amnio and am taking it easy for a couple days because it can cause your water to break, preterm labor, miscarriage, or infection. During the appt with the Dr yesterday, he was so thorough and very knowledgeable and gave me hope, until he said that he does believe she has trisomy 18. If she does not then he knows that the best Pediatric cardiologist is in St.Petersburg and will refer us to him for further evaluation of her heart because he is very concerned about it. The whole left ventricle (bottom left side of the heart) does not have any blood pumping through it. While he never gave us an official diagnosis, he mentioned that she probably has hypoplastic left heart syndrome. This is treated with a series of open heart surgeries or a heart transplant if severe enough. He also said that he does not believe that she has cysts on her kidneys, but that there are pockets of urine that is backing up that can be confused as cysts. Her right kidney does not look very good but he said the left looks normal. I was so relieved to hear this! You can live with only 1 kidney, but she would need a transplant if they both failed!

That is about it for now. We are just waiting on results of the amnio. Preliminary results should be back Monday or Tuesday. If it is positive for Trisomy 18 then we will just wait for God to take her from us and enjoy all the time we have with her. But if she does not have that, then we can start making further arrangements to get her fixed either inutero or after she is born.

Please continue to pray for Kylie and my family, this whole ordeal has been very hard on all of us and all of your support has really helped us get this far!