Confessions of an Angel Mommy

There is a video going around on facebook called Confessions of a Grieving Parent. I can relate to a bunch of the things that it says in the video so I decided I wanted to "confess" a few things about myself as a grieving parent...

I cry in the shower because its the only place I feel "safe" from others seeing me.

Sometimes I will force myself to stay awake later than Adam so that I can cry myself to sleep without bothering him.

Just because I smile doesnt mean that I am "ok" now because truth is, I will never be "ok" and dont want to be!

Being around other children is EXTREMELY hard, seeing them do normal kid things like getting popsicle all over their face or splashing in a bathtub just reminds me of what I will never have!

Hearing another baby cry makes me want to puke, I never got to hear my baby cry, not one single time. I am sure it would of been music to my ears!

When I go to Walmart I always walk through the baby section and touch all the little boy clothes and open the baby lotion and baby wash just to smell it. (crazy I know)

I go days without a shower and rarely shave my legs because I dont feel like I deserve to feel sexy.

I rarely put on makeup, dress up or fix my hair anymore because I dont feel pretty so whats the use?

When people tell me "I dont know how you do it, I couldnt do what you do" honestly....I want to punch them in the face....what choice do I freaking have? Do you think I wanted to do this? Do you think that I thought I could do this? NO but I do it because this is the hand in life I was dealt.

Dont tell me that you understand how I feel because you have lost a spouse, brother, sister, aunt or uncle...I lost my CHILD its not the same!

When I see pictures of a "normal" birth I want to scream at the top of my lungs because I didnt get that "normal" in fact I didnt see my son for the very first time until 7 hours after he was born. And didnt get to hold him until he was 8 days old

I feel like I will lose my husband at any minute because we dont have anything (children) to keep him from wanting to leave me.

Every time I feel a little sick or a pain I automatically think that I have some deadly virus and am going to die. The day after Parker died I was in the emergency room because I was convinced I was dieing. The next week I was at the doctor because I was convinced I had a staph infection, the week after that I was calling the birthing unit at our local hospital because I was convinced that my csection had went wrong and I was going to bleed to death.

I am terrified of having another child because I cant imagine what it would feel like to lose another one.

Soon after Parker died I would hold his little bear that we bought him like it was a baby just so my arms didnt feel so empty.

Sometimes I will touch his pictures just hoping that I will remember what the touch of his skin felt like.

I avoid going around family because I feel so guilty that I couldnt give them the perfect grandchild that they have always wanted me to have.

Sometimes I am so scared to be alone but feel like a burden if I ask someone to come sit with me.

I dont feel like I fit in anywhere, like I make everyone feel awkward because they dont know what to say to me without making me cry.

I feel like everyone around me is judging me for things I do or dont do.

Time will not heal my heart, I lost my child, things will never be the same!

These are just some of my personal feelings and from talking with other angel moms I understand that its completely normal. No matter what anyone says or does I am still going to feel this way, maybe things will get better, who knows, but my heart will never be whole!

I miss you baby boy, almost 6 months old...I honestly dont know how Ive made it this far. I just want to be in heaven holding you. I am so sorry that mommy wasnt enough to make you all better. Thats what hurts me the most. I am supposed to fix your boo-boos and make sure you get all better and I wasnt good enough to do that. I tried Parker I would of given you my heart if I could have. There isnt one second of any day that goes by that you arent in my mind. I miss you more and more! I cant understand why you had to be taken away from us! Please come visit us Parker in any way that you can, in a dream, a sign, something, I just miss you!

The one and only time I got to see my baby with his eyes open

A few rough days

This last week has been rough to say the least. The 19th Parker would of been 4 months old. Oh what I would give to see his smile. On the 23rd marked 1 year that we found out that we were expecting our sweet little guy. Little did we know how special he would be. Easter...I was just not feeling it. There was just nothing for me to celebrate. I didn't want to even get out of bed let alone watch little kids get to enjoy their Easter baskets and hunt for Easter eggs.

Yesterday was so emotionally exhausting so I was going to take a nap. Around 830 pm Katie sent me a text message and told me that Olivia was having a rough time and she thought this was "it" I waited and waited for the news to hear that everything was ok and she was just giving us another little scare, for those of you that know Olivia shes pretty good at that. Then came the news that I didn't want to hear...from Katies facebook wall "Chris and I have a beautiful sassy diva in heaven" I screamed NOOOO this couldn't be happening. Adam and I sat on the couch holding each other and crying for Katie and Chris. Not that any of the babies we lose in this community are easy but this one is HARD. Many of you know how close Katie and I are. I love that girl with all of my heart. I've never met Olivia and I already miss her. Almost everyday I would get a picture of her sent to my phone. All those cute little outfits and shoes....she loved shoes just like her Aunt Heather....Im gonna miss you Olive juice.

I spoke with Katie last night....A couple of weeks ago I sent Olivia an Easter basket with lots of little goodies. Katie told me that her and Chris got to give Olivia her last bath and dress her one last time. Katie dressed her in the outfit that I sent her in her Easter basket. It made me cry and smile all at the same time. It meant so much to me. I am so glad that she got to wear her little Easter dress and I know it looked beautiful on her!

Olivia and Parker were born 4 days apart, little angels. They both weighed 6 lb 1 oz. Olivia was 20 inches long and Parker was 19 inches long. Katie and I have a birthday less than a week apart. Parker and Olivia were our first babies. I don't know but I think we were meant to meet each other. I know that we were meant to be each others support. We have tooooo many things in common for this not to of happened for a reason. We dont understand it and probably never will but I just keep believing that she was put into my life for a reason.I cant wait to meet her, hopefully very soon!

Dear Parker,
You finally get to meet Olivia, isn't she beautiful? I hope that you 2 will play nice and watch over all of us. Even though we wanted to introduce you 2 little munchkins here on earth and watch you grow up, I know that you have met in heaven and are free of pain. We all miss you babies so much, please stay close to us as we are still struggling everyday. Please especially watch over Olivia's mommy and daddy these next few weeks they are going to need you 2.

Kisses, kisses and more kisses... I love you Parker and Olivia!

There is now a little monkey and a little owl in heaven...I can imagine all the trees you 2 have already climbed! Have fun, be good, and come visit us every once in awhile....


Please keep Katie and Chris in your thoughts and prayers as they lay their little angel to rest.

All the should haves

Back when I was pregnant with Parker I struggled a lot with getting ready for him. I didn't want to buy anything for him or have a nursery ready for him. My biggest fear was coming home from the hospital without him and having his room all set up. I didn't have a baby shower or anything, I was too scared of what might happen. If I could go back in time and change my own mind then I would get prepared for him. I was so wrong in thinking that coming home to an empty nursery would be my worst nightmare.

Even though I didn't have a nursery set up for Parker and all the things that he would need. I still collected plenty of things while we were in the hospital thanks to all the people that donated goodies to the families that were in the hospital. We came home with a car load of stuff for Parker. Some of it is still in the back of the car because we haven't unloaded it. Its just something that I don't want to do, or feel like I'm ready to do. Everyday I think of Parker and still cry for him. I walk by his "should of been" nursery and my heart still aches. Even though its not all set up and doesn't have a crib or dresser or changing table its still his room.

My point is, no matter if we set up that room and filled it with a bunch of baby things my heart still aches for him. Not having a nursery hasn't made my grief any less. Coming home from the hospital to a nursery and baby things wasn't my worst nightmare like I thought it would of been. Coming home from the hospital without my baby was my worst nightmare and nursery or no nursery I still hurt the same. I still have reminders of him in everything I do or see.

I just wish that I had more memories of him. I sit and wonder what theme his room would of been in. What the theme of my baby shower would of been. The memories me and my husband could of made while painting his room and buying the crib and bedding set. I feel like I gave up on him long before he was born and that wasn't fair for me to do. I hope that Parker knows that I loved him and wanted him to come home with me more than anything, even though I didn't even have a crib or anything for him.

I only have two things that I ever bought for my son. A few weeks before he was born Adam and I went to Babies R Us and picked out one outfit for him, the outfit that we dressed him in the night he passed away. The only other thing that we bought for him was a Build A Bear the day after Christmas. It hurts that I didn't get more involved in preparing for him because I don't have those memories.

I know I can't live the rest of my life regretting every decision I made but sometimes it's the only thing I know to do. I hope that someone reads this that is expecting a heart baby or any sick baby for that matter. I just want you to know that memories made will be treasured forever. Take every opportunity you have making memories with your baby. You don't know how many days you will have with your child, whether it be 11 days like in my case or 11 years, the only thing you have left is the memories. Make lots of them!

My special heart family

People often ask me how I have the courage to still follow all the other heart babies and their families. The truth is the other babies are my family too. I hurt right along with the other mommies every time there is an upcoming surgery, or every time another tragically loses their life, or when a mother is newly diagnosed and looking for answers. Once you are a part of this "heart family" you will never be the same. I am still a heart mom and always will be. It wouldn't be fair to Parker if I disowned my heart family because he is the reason I know so many of you.

There is one baby that holds a very special place in my heart! Miss Olivia! Katie and I met online when we were both expecting. Olivia and Parker were due within a week of each other. I joked with Katie one night that I was scared to go first and I wish she was going first. She text me one night and told me I got my wish, she was going to be induced on the 21st of December and I was scheduled for my csection on the 22nd of December. We talked about a lot of our fears and worries, the time was getting closer! Well our babies both had their own plan. Parker decided to make his arrival on December 19th. I guess he wanted to be older than his little girlfriend. Olivia had her own plans as well....if I remember correctly Katie was admitted into the hospital on December 20th and induced. She was in labor with little stubborn Olivia for 3 days! Olivia made her grand entrance on December 23rd (FINALLY) Our journeys began.

Everyone knows on December 30th Parker lost his fight and went to heaven. Katie has been there for me when all I wanted to do was cry or whine about how life isn't fair. She gets me and I get her. We aren't afraid to say how we really feel to each other, because we know we won't be judged.

At first Olivia was being a little rock star and sailing through recovery. She got to go home for a short time and then was readmitted into the hospital. She has been fighting for her life ever since. Katie tells me everyday exactly how she feels and I'm there for her. I listen to her complain and cry and whine about how life isn't fair and she just wants to take her baby home. I get it, I understand her and I listen. I try to cheer her up the best I can. My heart hurts for Katie that she hasnt got to take her home and spend all this time with her! I hurt every night when she tells me she's headed to the Ronald McDonald House and I know her heart is so heavy because she's leaving her baby for the night.

Adam and I love Olivia like she is our very own child. We feel like Parker lives on through her. I want to watch Olivia grow up because I know that every milestone that she hits, Parker would of been hitting them too. One day when she gets home and starts rolling over or crawling, I will imagine Parker doing the same things and smile. When she is eating her 1st birthday cake with icing smeared all over her face I will imagine Parker eating his and I will laugh.

Olivia,
It is very important to me and your mommy for you to get all better! I love you even though I've never met you. I know that Parker is watching over you and making sure that you keep up your fight. Keep on fighting so that I can keep getting these cute pictures on my phone everyday that make me smile! I cant wait to meet you in person so I can hold you and give you kisses!

Katie,
Thank you for being an awesome friend. I honestly don't know how I could of done this without you. You are an amazing mommy, and you are way stronger than you give yourself credit for. I wish that our babies could of grown up together but since thats not the way it turned out, thank you for letting me be a part of Olivia's life. She is a very special little girl and I will always love her!

Look at this little doll, how could you not love her!

The house that was once a home

At only 19 years old Adam and I were searching for a house to buy and make it our home. We were going to get married in June of 2005 and wanted to make the big step of buying a house together before we walked down the aisle. We searched for what seemed like forever for a house that was perfect for us. We decided on a 4 bedroom house because we both knew that we wanted at least 2 children. As we were walking through the house the first time we talked about our plans for the future. How the bedroom right next to ours would be the nursery and how when our child got older we could move him or her down the hallway to a bigger bedroom. How we liked that all of the bedrooms were upstairs so if we had company they wouldn't see the mess of the kids bedrooms and toys. How the yard was large and would be perfect for our children to have plenty of room to play outside. We fell in love with the house and made an offer. Only 2 weeks later we were signing on the dotted line and moving in. We had a home!

We lived in our home for 5 years before our dreams came true. We were FINALLY going to have a family to raise in our home. I am one of those people that day dream about how I want things to be. I have often stood at my kitchen sink doing dishes with a smile on my face as I dream about listening to my children upstairs arguing over a toy, or 2 sisters fighting over clothes or shoes. I would imagine cooking dinner and watching my kids play out the window from the kitchen. I would giggle at the thought of making them eat their vegetables before they could get up from the table and go back outside to play. Now only 10 months later my dreams are crushed. Everything is now what could of been or should of been. My dreams are filled with sadness and  heartache.

Some would argue that things are the same as before we had Parker. We have the same routine, same house, same empty bedrooms. Things are not the same! This house feels larger than before, it feels quieter than before and it feels so much emptier than before. I often sit in silence when my husband is at work and listen for the cries of my baby boy, I hear nothing but cries that are coming from deep inside my heart. I walk around my house like its the first time Ive seen it. I feel like a stranger in my own home. This was the home that we were supposed to raise our babies in and I don't feel like I belong here. I hope one day it will be different but until then its a big, quiet, empty house with 2 strangers living here dreaming of the day that this becomes our home again.

In Memory of Parker

This is a poem that I wrote in honor of my son.

Raise awareness, but what for?
Congenital Heart Defects, need I say more.

Its endless nights of tears as you wait for him to be born,
Its getting that first glimpse of him as they rush him away
Your heart is so torn.

You wait so long to hold him but you know that when you do,
It will not be the way you want because of all the wires and tubes.

They take him away for surgery you feel so helpless deep inside,
You get on your knees and you pray for God to keep your son alive.

The surgeon comes out to tell you that things didn't go as planned,
Its time for you to see him, Its time to hold his hand.

Your eyes fill up with tears but you know you have to be strong,
You have to let your baby know that he did nothing wrong.

You hold him and you kiss him and tell him its okay,
You tell him that you love him, but understand he can not stay.

He opens his eyes to look at you, you know the time is near,
You suddenly realize that this was your worst fear.

Now fast forward one month later and the pain is still there,
You are trying your hardest to make the world aware.

If you think this will not happen to people just like you,
I can tell you very different. Very sad but very true.

40,000 more children will be born affected this year,
4,000 wont live till their 1st birthday, a parents worst fear.

CHD research is grossly underfunded,
Please help me raise awareness this affects 1 in 100.

As a heart mother we ask for you to spread the word,
All that we ask is for our voices to be heard!

One month in heaven

Yesterday marked one month since Parkers death. To say that I miss him is an understatement. My heart physically hurts like it has been ripped out of my chest. I guess since half of my heart is in heaven, then it is to be expected. This past month I have been through the most difficult things that any person could ever go through but Im still here, Im still breathing, I am surviving the unimaginable.


Today I had my six week checkup, Ive been dreading this day for weeks now. Having to go to your six week postpartum checkup without a baby is like living a nightmare. It marks the end of this pregnancy, I feel like this chapter of my life is over. My first pregnancy, my first baby all gone forever. I cried a lot of tears while talking with the doctor today. We talked about the day Parker was born and his first Christmas. We talked about how he fought so hard for all of his eleven days and made his mommy and daddy so proud. We talked about his funeral and how Ive dealt with everything since then. It felt so good just to have someone to listen. She didnt try to understand how I felt, she just listened and was there for me to let it all out.


My doctor today talked a lot about support groups and counseling. I told her about my wonderful support group that I have found online! She was so happy that there are so many others willing to help. I am so proud of my heart family online, I am so glad to know Im not walking this horrible road alone. I love every single one of you in a very special way! I know Ive said it before but thanks again to each and everyone of you for all of the comments, emails, phone calls, text messages it helps me to get through every single day.

To my sweet Parker,
Its been one whole month without you. I havent touched you or seen you, mommy misses you! I hope that you know how much me and your daddy love you. We talk about you every day and we snuggle with your blankets and your Build-a-Bear every night. We would give anything to have you here to snuggle with instead. Someday we will snuggle with you again Parker, that is my promise to you. I love you more than I ever thought possible

One month ago today

One month ago today I woke up around 5:30 am not feeling quite right. I waited around all day thinking I was just not feeling well. Finally around 3:30 we went to the hospital. Within an hour they were getting me prepped for the arrival of Parker. At 6:07 pm he made his grand entrance. Weighing in at 6 pound 1 ounce and 20 inches long.

Fast forward a month. Parker is still the same size as he was at birth. He hasn't grown, he hasn't cried, he hasn't gazed at his mommy or daddy while we rock him to sleep. Reality is my baby is gone. Sometimes it hits me like a brick wall. Not that I don't think about it 24/7 but sometimes I do smile and am "okay" Other times I am buried in my husbands chest sobbing hysterically.

I sit and wonder often about what Parker would be doing right at this moment. But truth is I don't know what he would be doing, I don't know what babies do at one month old. You see this was my first time around. I am a childless mother. My husband is a childless father.We will never experience milestones with Parker. He will always be an 11 day old baby to us. We don't know anything after that.

Someone asked me today if I ever wish this would of never happened. If I wish that I would of never got pregnant. I didn't even think twice before I answered NO! I would relive every single tear, fear, worry all over again. I would sit in that hospital just watching my baby, not being able to hold him all over again. I would recover from my cesarean all over again. They were not only the scariest and most stressful days of my life but they were also the BEST days of my life and I would live it one hundred times over!

Happy one month birthday Parker. Mommy and Daddy love and miss you so so much!

Working through the feelings of grief

I am learning very quickly that everyday is a brand new challenge. Grief is different every single day. Sundays are always hard for me because its the day that Parker was born. Yesterday he would of been 3 weeks old. I had a rough day yesterday, the smallest things were setting me into a frenzy of tears for no apparent reason.

Smells....There are certain things that remind me of our time in St. Louis while Parker was still here. Yesterday I was in the shower and went to use my conditioner. For some reason that smell set me off. I cried and cried while trying to rinse it out of my hair. Then came the body wash. The tears started again. I got out of the shower and started to dry off when all of a sudden it hit me. My belly was gone. I could wrap the towel around me and it would stay. I didnt have my big pregnant belly sticking out to make it difficult for the towel to fit.

Most women would be happy that they could fit back into their prepregnancy jeans only 3 weeks after giving birth. But I hate that they fit. I hate that my belly is gone. I hate that people around me dont know that I just had a baby unless they know of my situation. There is no evidence left. I dont have a baby in his car seat that is screaming because he is hungry. I dont have spit up all over my shirt. I dont have dark circles under my eyes because I was up all night trying to comfort my sweet Parker. I have dark circles because I cant sleep at night from missing him. I honestly feel like a train wreck.

Another part of grief that I am dealing with is guilt. I feel guilt for everything! I feel like Ive let my husband down because I couldn't give him his "perfect" first born. I feel guilt because my husband is hurting so bad and I cant fix it. I feel guilt when I cry out to my husband because I know he is hurting just as bad as I am. I feel like I failed as a mother because I couldn't fix my son. I couldn't care for him like he needed. I feel guilt because I didn't stay with him more time than I did while he was still alive and in the hospital. I feel guilt because I couldn't  hold him all of his eleven days and show him that I was trying my hardest to make his heart work. I feel guilt that I didn't kiss him or touch him or hold him one more time. I also feel guilt for others around me. I hate that I have to bring everyone down around me. I put them in uncomfortable situations when I'm around. I feel guilty if I actually get up and around to shower, because I feel like I should be laying in bed with the lights off crying all day. I feel guilty when I don't cry. Oh the guilt! I just cant get over all the feelings.

I am holding out hope that maybe someday I wont feel this way. Someday I wont hurt this bad. Someday I will find comfort that my baby isn't suffering any longer. Right now its just too much to comprehend.

The things a parent should never have to do...

Over the last few weeks I have endured some of the most painful things that no person should have to go through. This is just a little glimpse into the reality of being a heartmom/child loss survivor....

I gave birth to a precious little boy only seventeen days ago and didnt even get to see or touch him until seven hours later.

In order to see my son I had to ask permission.

In order to touch my son I had to find a place on his body that wasnt covered by a tube or wire.

I got discharged from the hospital and had to leave with empty arms because my son was still admitted.

I had to leave my son every night in the care of the nurses because I wasnt good enough to take care of his needs.

I had to listen to doctors tell me that there wasnt much hope for my son.

I had to answer the phone in the middle of the night and be told that my son couldnt hold on much longer, please come hold him.

I had to hear the words of the doctors tell me that my sons kidneys were failing him and I needed to make a decision quick.

I had to tell the nurses just to let him rest.

I had to listen to my husband say, "Im ready for the tubes to come out"

I had to hold my son and cry over him while he left this earth and went to heaven.

I had to go to the funeral home and make arrangements for my sons funeral.

I had to go to Babies R Us and pick out an outfit for my son to wear to his funeral.

I had to go pick out something for my husband and I to wear to our sons funeral.

I had to go pick out a flower arrangement for sons casket.

I had to go "view" my babys body.

I had to attend his visitation.

I had to attend his funeral.

Now its all over and I feel this great sense of now what? I feel like life just goes on around me and Im left to try and figure it all out. I cant understand why I dont have my baby here with me to feed and bathe and love on. I know I will never understand and it hurts. I would give my life just to hold him one more time. Just to kiss him one more time. I never heard Parker cry...I know it would be music to my ears. I miss him so much.

Heart defects are such an UGLY thing! I hate them! I hope to continue to spread the word about this terrible thing we call a CHD! I hope to someday make a difference.

I know that along this journey I have met some amazing women that have helped me in so many ways. I hope to someday give the same support to another new heart mom. Thanks to everyone that has been there for me, answered all of my questions, listened to me cry, whine, scream. You name it Ive done it and I know I couldnt have without this great community of other mothers whom have traveled this road before.

Parker Ive said it a thousand times and Im sure I will say it a thousand more...you have changed us FOREVER! You may not be here physically but I know you are watching over us. I love you son forever and ever. Thank you for fighting so hard just to give us eleven days with you, they will always be the best days of my life.

11 short days

This will be a short update because I have no words right now, I am numb and confused. 

I am deeply saddened to post that my beautiful baby boy went to heaven on Dec 30 around 5:30 am. We held him and kissed him as he went to be with Jesus. All we had was 11 short days with him, they were the greatest days of my life.

I never heard my baby cry, I never changed his diaper, I never got to feed him. All I have left of him is a small clip of his hair, some footprints and pictures. My arms feel so empty. I only held my baby twice. Once when he was 8 days old with tubes and wires everywhere. The second time while he was leaving this earth.

I will be taking a break for awhile as I try to get through this very tough time. I appreciate all the words of kindness and every single prayer. I am truly amazed at how many people have supported me through all of this.

We made the funeral arrangements today it was something no parent should have to do. For everyone interested Parker's services will be at...

Clarks Funeral Home
312 S Wood St 
Neosho, MO 64850

Visitation from 6-7 pm on Tuesday, Jan 4th
Funeral at 10 am on Wednesday, Jan 5th

I miss you more than you will ever understand my sweet angel. I would give my life to hold you just one more time. Your mommy and daddy will NEVER forget you and we love you more than we ever thought possible.

One day at a time

I have learned very quickly that no matter how much you try to prepare yourself for this journey, you will never be fully prepared. Parker has definitely showed us that this is all going to be his way or no way.

He had a cath on his lungs yesterday to check his pulmonary veins to see if they had been damaged due to the intact septum. The cath went fairly well all of his veins seemed be working the way they were supposed to. They scheduled a lung biopsy for this afternoon to try to figure out what is going on with his lungs. They are still thinking he will have to go the with a heart/lung transplant but we wont know anything until we get the results of the biopsy back.  If the biopsy comes back good then we can go ahead with the norwood.

Parker has plans of his own though. Overnight they have discovered he may have an infection so they have postponed the biopsy for now. They have started him on antibiotics already so hopefully it will take care of it.  I really dont know how I get through everyday without having a complete breakdown. This is all so much to have to deal with. I wouldnt wish this on my worst enemy. This is literally one day at a time like everyone has been telling me. I just feel like we arent making any progress and still dont have any answers.

On a happier note, we got to hold him for the very first time yesterday. I was so emotional. It was the best feeling in the world just to hold him even if it was just for a few short minutes. Seeing my husband hold him was my favorite part. I was in awe at how much love I felt for him at that time. We made this child together, I carried this child for 9 months, and I was finally able to make him a daddy. Just seeing him hold him and look at him was the most precious moment of my life. I am so glad I was given this opportunity to give him this perfect little boy.

I will keep everyone updated about the infection when we find out more, and of course the biopsy. I am ready to get things started. Parker has been here for 9 days and we are still at square one. I wouldnt change it for the world though. All of the long days in the hospital and the sleepless nights, all of the tears are so worth it because he is so perfect. I love him more than I ever imagined.

Merry Christmas!

Today Parker had a pretty all over the place day. They couldnt find a happy medium for him and his sats were too high then too low up and down all day long. I guess he knew the nurses were getting paid holiday pay and wanted them to work for it!

The big issue right now is his lungs they are retaining so much fluid because of his intact septum and they have to get them cleared up before they can even attempt surgery on his heart. The doctors yesterday took us into the consultation room and told us that things werent looking good. They said that from the looks of it he had some kind of pulmonary lung disease and would need a heart/lung transplant. The problem with that is the list is so long and he is so sick that he wouldnt make it waiting on the transplant. It was devastating. They told us they were going to try a few more things and give him a few days to see if things cleared up so they could do a cath on his lungs Monday to check his lungs.

They started him on some more diuretics to try to clear up some fluid from his body. He is now on Lasix, Diuril, and Aldactone. Hopefully it will help clear up his lungs so they can go ahead with the surgery. The cardiologist that listened to his lungs tonight said they sounded better and sounded like they were clearing up. I hope that is the case but we wont know until tomorrow morning after his chest xrays. I get so frustrated with all the doctors because it seems that every doctor is telling us something different. The 2 doctors yesterday that talked to us basically told us that there was no hope. Then we talked to the surgeon and he told us there was still some hope. The first cardiologist this morning told us his lungs still sounded bad then the one tonight told us they sounded good. I just wish we could sit down with all of these people at once so that we could get a straight answer!

This has been the hardest week of my life. I havent got to hold my baby, if you touch him too much he gets too excited and sets his machines off. He just lays there with his sad eyes open looking at us wondering why we dont pick him up and comfort him. And then there is his cry you can tell he is crying by the look on his face but you dont hear a sound. It is truly the saddest thing Ive ever seen.

I might add that nobody warned me about the great joys of pumping! I cant get anything done or do anything without having to schedule around pumping! My schedule goes a little something like this. Pump, pee, pump, brush my teeth, pump, eat, pump, pee, pump. Ok you get the picture. I dont know how a person can keep this up for that long its exhausting!

I have to get off here now so I can pump and then get to sleep just to wake up in a few hours and pump some more :) I hope that everyone had a Merry Christmas!

P.S. I had the pleasure of meeting Ruthie and her mom Laura at the hospital this morning! They came for a visit to tell everyone Merry Christmas! It is so nice getting to meet other heart moms! I also spoke with Kathy on the phone this evening. It was such a pleasure talking with you. Jake gives me so much hope for my sweet Parker. I hope that next year at this time I am helping another new heart mom through this journey just like all of you have helped me! It means the world! 

Day of Discharge

First I want to start by saying I dont know how all you heart moms do this. I feel like I dont have a second to breathe let alone update my blog! Im finally getting a second to sit down, process my thoughts and relax!

Today was discharge day for me. Very bittersweet. I left the hospital without my baby and I had a very hard time. Its not fair to be walking out those doors with empty arms. But....I know that I cant give him the care that he needs. It also means that I get to spend all the time with him that I want to right now! I have held myself together so well with a few minor meltdowns. I love seeing his sweet little face and letting him hold my finger but at the same time I hate it all. I cant see all of his face because of that ugly vent that he has! Everyone was so right when they said this would be an emotional rollarcoaster.

Ok enough about my emotions everyone comes here to read about the precious little Parker! He is holding his own, Im still learning all of this stuff they tell me a hundred times what things mean and I forget in 10 minutes. There are sooo many things to remember and numbers to watch on those screens. The poor nurses already probably think Im a nutcase. Oh well he is my son and I deserve to know what everything means and does. The drs seem to be pretty happy with where he is at right now. He is doing way better than what any of them expected. They do keep him pretty drugged up right now because he gets so upset and startled so easy and it causes everything to go crazy.

As of right now they are talking about his Norwood surgery taking place around the 1st of next week. They said probably Tuesday. This is all just a guess right now because with these babies as many of you know it is literally minute by minute. But Tuesday is what they are shooting for. While I am ready to get this show on the road and get his recovery started...I am not ready at all for this surgery. I cant imagine how I am going to get through it. I havent even got to hold him barely get to touch him because he gets startled and I am supposed to hand him over to the surgeons for a MAJOR surgery. I am really going to need to dig deep to find the strength to get through next week! I give props to all of the heart moms that have done this ahead of me now I can truly understand how you feel.

On another note...tonight we checked into the Haven House for our stay until the Ronald Mcdonald House gets an opening for us. As we walked in the door the lady at the front asked how the baby was doing and I replied with a good. She asked what we named him and I told her Parker. I kept on walking and I turned around to see my husband wasnt behind me because he was showing off pictures of his son to the lady! It made my heart melt! I didnt even think to stop and show her I was ready to get to the room and relax but proud daddy has to show everyone. I love him so much and I am so glad that I have been able to give him this precious gift of having a son!

I will leave you with a few pictures before I call it a night and try to get some rest

Parkers arrival

Parker was scheduled to arrive on Dec 22nd via csection. Well Parker had his own plans. He arrived yesterday Dec 19 at 6:07 pm.

The story of how it all happened. We arrived in St. Louis on Thursday we had our appts on Friday and then stayed here just incase I went into labor. Well thank goodness we stayed! Early Sunday morning I was not sleeping well waking up throughout the night with some minor cramps. At around 530 am they started getting worse still not bad at all. Finally at 730 am I got up and started moving around I was just not getting comfortable and the pains were getting closer. I continued having contractions all day but they were never really consistent. Sometimes 15 minutes apart then 8 minutes then 20 minutes. There was no pattern that I was noticing at all. This went on all day but it was never anything very intense so I didnt think much of it. That afternoon they started getting stronger and a little more consistent. FINALLY at 3 I talked my hubby into taking me into the hospital. He was convinced that I was not in labor and that they were just going to monitor me and then send us back on our way. I think he was in denial of everything. He really thought I was just joking about the whole situation. We got in the car and headed to the hospital.

When we arrived at the Pregnancy Assessment Center they put me in a room hooked me up to the monitors and then checked me. Well I was already dilated to a 5 almost a 6. Boy was I in shock. Labor was nothing what I thought it was going to be. I was expecting I would "know" when I was in true labor and especially dilating so far. Needless to say things became very rush rush from this point on. We called our families really quick and told them to head this way. We live 4 1/2 hours from here. They started throwing things in the cars and were on their way.

Everything started happening so fast I cant remember alot and there was no time to even be nervous. It was a bit overwhelming here we were all by ourselves our families so far away and our baby about to make his appearance very soon. They told me they had to give me something to try and delay my labor because they needed an hour to get the whole team of drs together that were going to be needed to care for Parker. They gave me my epidural when I was at a 7 started prepping me for the surgery and started getting my husband prepared in what he needed to be doing. At 6 they wheeled me into the OR and at this point I could feel him coming sure enough I was dilated all the way and they had to act fast because he was breech. My hubby came in and they started right away and at 6:07 pm Parker made his great entrance into the world. He was immediately taken away neither one of us even got a glimpse of him. He was going straight to the cath lab.

Thankfully somewhere in here I was at so much peace. We were both holding it together so well, we didnt have time for tears and all we had was happiness. Everyone has been telling me that it would be this way but I had such a hard time believing that until I went through it. Adam went to the waiting room of the cath lab to wait on Parker and I was in recovery. We were both alone but still holding it together. We kept talking through text message and on the phone and updating each other on everything going on. Finally around 930 pm Adam got to go see him for the 1st time. He did well in the cath lab and was stable. He weighed 6 lbs 1 ounce and was 20 inches long. He is so perfect. I have never felt so much love in my life. It is very emotional but a different kind of emotional than it was during the pregnancy. Now I can actually know and see whats going on instead of wondering and worrying what will happen. I got to see him finally around 1 am and fell in love instantly!

As of now we are both doing great, Im trying to get as much rest as possible but I want to be with my baby all the time. He is doing well and I know there is nothing I can do to help him but just sitting with him makes me feel like Im contributing somehow. We are still waiting to see how everything goes before they will start talking about the first surgery. Hopefully by tomorrow we will have a better idea but its all just day by day.

I will try to update some more tomorrow. Ive been very busy the last couple of days and am just now getting a chance. Were on our way to go see him now then we are going to get some rest for the night. Here is a couple of pictures of him like I said I will try to get some more pictures soon and more updates when they become available! Thanks for all the prayers and support!

 (these pictures are small for some reason its all I can do right now until tomorrow sorry)

This one is for Parker

This post is for Parker to read someday, I dont want him to think that I was a crying emotional mess all the time.

Parker words cant even begin to explain the love that your daddy and I have for you. We have loved you for many many years long before you were even given to us. I just want to tell you that even though you have a broken heart that will never be 100 percent repaired, we love you no less. In fact we love you more. We now know not to take things for granted. We have learned so much from you already. You have taught us how to love each other more. You have made our marriage grow stronger. You have showed  us what real love is.

When mommy was only about 19 weeks pregnant with you daddy got to feel your tiny kicks for the first time. The look on his face was priceless. He would poke and poke at my tummy trying to get you to move some more. I knew that he was in love with you. I would just lay there and let him feel you squirming around with the fullest heart.

Your daddy thought you were going to be a little girl all along. He even bought you the cutest outfit (behind mommys back) right after we found out we were going to have you. One day he went to check the mail and the outfit had finally came. He brought it to show me. It was a tiny pink Kansas City Chiefs cheer dress! The look on his face was so cute, he was so excited showing it to me, then he hung it up in your closet. He even put a diaper on the hanger and told me that he had your outfit all ready to come home! I love this new happiness you are giving your daddy.

The day of your ultrasound before we found out about your broken heart the nurse told us you were a boy. I looked up at your daddy and he had tears in his eyes, but a big smile on his face and I knew that he still loved you even though you would never wear that pink dress he had picked for you. He was now dreaming of you being a quarterback. And then we found out about your broken heart. I just want you to know Parker that you are not alone, your mommy and daddy have a broken heart too. Of course not in the same way as yours but the kind that feels like it has been shattered into a million pieces.

We laugh at you every single day! You are such a wiggle worm. I call you mommys little monkey. I have so many videos that I will show you someday of how much you like to wiggle around inside of your mommys tummy. Every night when your daddy gets home from work you like to show him how silly you are. You love to hear your daddys voice.  You start jumping around from one side of mommys tummy to the other. You always stick your feet out as hard as you can so that we can feel them. We kiss on you and love on you every night before we go to bed.

Then there are your hiccups...you get them alot. Sometimes you make mommys tummy jump really big from your silly hiccups. Daddy calls those your big boy hiccups. He will pat my belly trying to calm you down.

I just want you to know Parker that when mommy yells that she just wants this to go away and starts her sobbing that I dont mean you. I dont want you to go away, I just want your broken heart to go away. I want you with me forever. If that means that you have to be in my tummy forever then I would do it in a second. At least then I know that you are safe. I just want you to know how much you have made us laugh, smile and love. It is not all tears. And when the tears do come its not because we are angry with you, its because we love you more than you will ever understand.

We will see you in 2 short weeks baby boy, until then keep growing and squirming mommy doesnt mind.

Praying for a miracle!

I had a GREAT day on Saturday with my husband. We got the opportunity to get some maternity pictures done. This is the only one Ive seen so far but I love it. We were praying for a miracle for our precious miracle Parker! Thanks again to Becky for taking time out of her busy schedule to do this for us. It is something that I didnt think we were going to get the chance to do because we havent had the extra money to spend. These pictures will be something that we will cherish forever! For everyone that knows Adam...he HATES pictures and refuses to get them done. So I had to do some bargaining with him and let him wear his hat LOL! He did awesome, we laughed and smiled throughout the whole session. It really made my day!

After we were done with the pictures we went to Babies R Us to buy something for Parker. We hadnt bought anything for him at all, it was something I just didnt want to do. I know that some people in our situation carry on like everything is "normal" and set up the whole nursery and have baby showers but this is something that I have really struggled with. Now as time is getting closer I knew that I was ready for us to at least buy him one small thing.

I really hate going into the baby section of any store its really depressing and makes me sad every time. But with my husband by my side and holding my hand we entered the dreaded store...We right away started looking through all of the clothes. Ive been at a loss at what to even buy him because of the surgery and all the tubes and wires. I have received some great advice on things to buy from other heart moms. Someone told me to buy some shirts or onsies that button all the way up so that the wires can come out of the little openings. So we wandered around amongst all the other pregnant moms, and new parents with their little babies looking for something as simple as an outfit to put our son in. All we could find is one little outfit! Thats it just one. My husband became upset because they dont have any options for a baby that needs special clothing. He said we needed to open up a store for babies that have to undergo surgery within their first few days of life. Its just tough because you dont know what to buy. You dont know how long it will be before they can even wear clothes so you dont know what size to buy. They didnt have a section of just hats you have to buy a whole outfit that comes with the hat and once again they cant wear the dumb outfit that the hat comes with! They didnt have any leg warmers which is basically all he can wear to keep his legs warm until hes able to wear clothes. Its so frustrating that something as simple as trying to find your own child an outfit can be so impossible! We do have some blankets so at least he will have something to keep him warm.

Sometimes I feel like such a failure as a mother because Im not prepared at all for when Parker comes home. I have very few things. I dont know what to buy him. I dont want to buy him anything because it makes me sad. I just feel like I cant hang on any longer but yet I want to hang on forever. I only have 16 more days. 16 more days guaranteed with him. 16 more days of him not having to fight for his life. 16 more days of knowing that he is safe and warm inside of me.

I know these next couple of weeks are going to be a whirlwind of emotion but like the picture above shows, we are still praying for a miracle.

The difference a year can make

Last year at this time I was dealing with infertility. My heart ached at the thought of never carrying a child, growing old with nobody to take care of me, no family to spend the holidays with. It was a very difficult time. I was so selfish and full of hatred. I hated that my friends and family were getting pregnant all around me. I couldn't understand why I couldn't do something that was happening by "accident" to everyone else.

Thanksgiving last year we had dinner at my moms house. We all sat around the table eating and I watched my sister pick at her food pushing it around from one side of the plate to another. We all got up from the table and my sister told me that she needed to talk to me about something so we stepped outside. With tears in her eyes she told me that she was going to be a mommy. I was in shock. She kept apologizing to me and telling me over and over that she didnt mean for it to happen, she wasnt ready for a baby, and that she wanted me to have the first baby. I was mad, I hated her, I screamed, I said hateful things. I couldnt look at her, I couldnt talk to her, I just wanted to run away. I went into my other sisters room and I cried like I never had before. The next few months I pulled myself away from my family. I felt like I couldnt share in their happiness so I didnt want to be around them. Everyone kept giving me "advice" on things to try and stuff to do to help me to conceive. It made me madder and madder nobody understood because everyone that was telling me this had conceived so easy.

In March the doctors told us that having children of our own was not very likely. In April I found out I was expecting. I will never forget that night for as long as I live. The look in my husbands eyes when he read me the results to the test I had taken and didnt want to look at. I was on cloud nine! I took several more tests and they all had the same result. I just couldnt believe it. I woke up everyday thinking I was going to wake up from my dream. Slowly but surely my belly started growing. I apologized to my sister for all the hurt that I had caused her. I knew that no matter what we were going to need each other. No matter what our children were going to need each other and we both knew we wanted them to grow up being best friends. I threw her a baby shower and a month later got to meet the sweetest little guy I have ever laid eyes on.

Payden Brown born July 6, 2010

 

And then came August...the days were slowly crawling by. I had waited so long to see my baby on that ultrasound and find out if my sisters baby would have a partner in crime to grow up with or a little princess that he would defend all the way through school. Little did I know that things were about to change. August 12, 2010 that is the day that I became a changed women. That is the day that the little things in life didnt matter anymore. That is the day that I became aware of CHDs.

Last year I cried because I thought I would never have a chance to meet my children. This year I cried because I dont know what my sons future holds.

Last year I hated the fact that my sister was going to have a baby. This year I played with my nephew, made him laugh, kissed him, tickled him, fed him, and was thankful for it.

Last year I unpacked all of the decorations and started decorating for Christmas. This year I have to start packing for Christmas spent in the hospital with my little blessing.

If only last year I would have known what I know now I could of been a better person sooner. Oh the difference a year can make!

Parker
From the bottom of your mommies heart I am so thankful for the way you have changed me. All of the things that I thought were such a big deal no longer matter. Because of you I have so many things to be thankful for. Because of you I will never look at this world the same. I promise to give you the best chance that I can give you. I promise to cherish everyday that you have with me. I promise to continue to fight for you. I promise to give you the best life I can give you. I owe you the world son.

I love you will all my heart and then some,
Mommy

Trying to prepare

Just a warning this post will probably be long and all over the place.

We went to St. Louis for all the appointments and tours of the hospitals today. Im always fine for the most part until I get up there and realize that this will be my home and life in the very near future. We arrived Sunday night and spent the night because our appointments started at 8 am this morning. Our first appointment was the routine ultrasound to check his growth. He is growing awesome they said he was around 5 lbs and 6 oz today. Hopefully he continues to grow and with Thanksgiving Im sure I will have no problem trying my hardest to fatten him up some more. We didnt get very many pics this time and none in 3d kinda disappointing but the little guy just wouldnt cooperate lol.

Our next appointment was with Maternal Fetal Medicine just the routine checkup of measurements, weight gain and all that fun stuff. I asked lots of questions about the delivery and what to expect. They have me scheduled for a c section (he is breech) on Dec. 22nd. I have very mixed emotions about that day, of course Im excited to meet him but I also just wish he could stay in there forever because this is the only time I can protect him. After the 22nd he is on his own and I feel completely helpless. Why should a mother and father have to go through this? Is it a test on our marriage? Is it a test of our faith? Whatever it is I dont like it and I would literally give my life to take this all away from him.

Our 3rd appointment of the day, the one that I always dread, the fetal echo. I hate more than anything having to see his broken heart on the screen knowing its all out of my hands. Last time we were there they thought he had a restrictive atrial septum. This time they are saying it looks completely intact. There is no blood flow getting through at all. This is the part that is the hardest for me. (This is the part in the appointment where I just stared at the floor with tears flowing, and tried not to listen to a word the doctor was telling me) What this means for Parker after he is born is that he will need immediate attention in the cath lab. From what I remember the doctor said they will need to act VERY fast. These babies are very critical and without this procedure within the first few minutes of his life he will not make it. The doctor explained to us that even though it seems so unfair, the wont have an extra second to spare for me to even touch him. The will immediately intubate him and whisk him away to the cath lab. Adam is going to be running behind them to be with our son. At this time I will be alone, very alone, without my baby and my husband. Nothing but strange doctors around me getting me all sewed up. I want my husband to be with Parker but at the same time this is the time Im going to need him. I feel so selfish. Im so scared of being alone but I know our son needs him more. Im a big girl and I should be able to deal with this by myself right? Why do I feel this way? The doctor just didnt give us much hope at all, he kept repeating that our baby was very sick. He said that after they open up the septum he still may not be strong enough to have the Norwood (the 1st surgery) then we will be faced with a decision to put him through it or just let him go. I dont want to think ahead to that point right now, I cant even imagine.

My feelings...Im handling it all the best I can. I have been trying to prepare myself for "worst case scenario" all along. I know you will NEVER be prepared for having to let go of your child but I feel like I have to start preparing now. I know that I can do this, that while it may be the hardest thing I will ever go through in my entire life, I know that I will be ok. Its my husband that I worry about. I cant fix it for him, I cant give him the family hes always wanted, I cant give him this perfect baby, our first born child. I know this may sound so wrong to some but Ive been grieving the loss of my baby since my 20 week ultrasound. Its the only thing I knew to do and Ive kind of in a weird way came to peace with all of this. As much as I want to fix my baby I know its out of my hands and I have no control. If he lives he will be my miracle and if he goes to heaven then he will no longer suffer and he will be my angel. As much as I hate to think that he wont make it I find strength in knowing that he wont suffer here on earth. My husband on the other hand hasnt shared his feelings on any of this, he keeps it all bottled up and Im so scared for him. He has done nothing but be strong for me and has yet to show that he is weak. He gets me through every day when all I want to do is lay in bed and cry. I love him so much for this but I want him to be weak with me, I want him to cry with me, and I want him to talk to me. Im so scared I will lose my son and my husband all at once. Im just so damn scared.

One thing I think about often, I had a very hard time conceiving this precious baby. We were told that it would probably never happen because we both had fertility issues. I used to pray/beg god for me just to be able to become pregnant. That is all I wanted was to be that glowing pregnant women in the store rubbing her belly. I would always think about Adam rubbing my belly and singing to our unborn child. I tried to imagine what it would feel like to feel the kicks for the first time. I dreamed of what I would look like pregnant. I thought of holiday traditions we would start and bedtime routines that included story time. Now that I think back not once did I pray to be pregnant with a HEALTHY child. Why would I not ask for that too? Why would I just assume that I would have this healthy baby and everything would be ok? I think maybe this is were I went wrong. Why would I beg god for a chance to be pregnant but not ask for my innocent child to be healthy? This is all too much sometimes god help me please...

Now that this has become a super long rambling mess of nothing that makes sense I just ask that everyone pray for us. Give me advice. Help me help my husband. Please help us prepare...

Emotionally all over the place....

Lately I find myself comparing our situation to others, I dont know why I do it I really try not to but I cant stop myself and its getting me no where emotionally. I still ask myself why and I still cry out that life isn't fair. I feel like people around me think that I should just except everything and just go with it but I cant stop wondering what if.

I decided right after we found out that Parker had HLHS that I didn't want a baby shower and that I didn't want a nursery because I was thinking about all the what ifs. I didn't want to come home to a house full of things that represented his life if he wasn't here with me. I don't understand why I cant just carry on like everything is normal and celebrate this pregnancy as if everything was ok and that he WILL come home with me. I feel like I'm mourning the loss of my baby before he is even born. I don't know if I made the right decision by not wanting things because now I feel like I'm not prepared for a baby that very possibly could come home.

I am just such a mess and feel so alone through all of this. I feel like I'm "behind" emotionally when I compare myself to other heart moms who are currently going through or have been through this already. I have more bad days than good lately. I think its because the time is getting so close. I can't look at baby things in stores without crying or feeling sad. I cant be happy for other people whom are expecting or just had a baby. I feel like I have so much hatred and I don't like it, but how do I just get over it and except my situation?

I find myself saying if he comes home instead of when he comes home. I don't want to be so negative about everything but I guess I'm trying to prepare myself just in case. I don't know how to explain all of this to people who have never been down this road. I don't know how I'm supposed to feel or if all of my feelings are normal. I don't even know if there is even any such thing as normal anymore. My life feels like its turned upside down and inside out and everyone is just staring at me like I'm a nutcase!

On another note I quit my job this week. Not because I wanted to but because I have no choice and Its time to start preparing for little Parker to make his entrance into this world. Once again this made me compare my situation to everyone else all week long. I didn't quit my job to become a stay at home mom to a perfectly healthy baby like I had always dreamed of. But I quit my job to become a stay at home mom to a very sick and very fragile baby. I cried so many tears this week because I knew this was it, this was the beginning. I have nothing more to keep my mind occupied I will be sitting at home getting everything ready for Parker. 

Thank god for my husband because without him I would have crawled up in a cave somewhere and given up already. I just hope that he continues to keep his strength through all of this because I know Im going to need him more than ever in the coming months. I love you so much Adam and I know that you are going to be the best daddy in the whole world! Thanks for being my support and strength through all of this. Parker is the luckiest little boy in the world to have a daddy like you and I cant wait for him to get here so we can meet him!