Friday, December 31, 2010

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.

Tuesday, December 28, 2010

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.

Saturday, December 25, 2010

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! 

Wednesday, December 22, 2010

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

Monday, December 20, 2010

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)

Wednesday, December 8, 2010

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 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.

Monday, December 6, 2010

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.

Friday, November 26, 2010

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!

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,

Monday, November 22, 2010

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...

Saturday, November 13, 2010

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!

Sunday, October 31, 2010

Emotionally drained

We had our appointments in St. Louis this week and wow what an adventure. We got there around 8 Thursday night and stayed at the Haven House. We didnt get much sleep at all we were both scared, nervous and just ready to be back home. We got to the hospitals around 830 Friday morning and oh my, words can not describe the size of that place. It is like a city within a city, Ive never seen something so big in my life! We finally got parked and started inside and tried to find our way to our first appointment. I was immediately overwhelmed by all of the hustle and bustle inside the hospital. Drs and nurses walking around everywhere, sick kids walking the halls, it was like something out of a movie. Our first appointment was the Fetal Echo. We got there about 30 minutes early and they went ahead and got everything started. I never knew an ultrasound could be so painful, they were scanning the babies heart for about 2 and 1/2 hours and the tech was not very gentle pressing very hard on my tummy. My stomach was so sore and misshaped after she was done. The dr came in to let us know what they had seen. She told us about the HLHS which we already were aware of, but then told us that the reason they had been scanning for so long was because they found something else that they were concerned with. If I remember correctly she said that little Parker also has Restrictive Atrial Septum which means that the blood flow from right side of the heart is not getting to the left side because of the small opening. The blood is backing up and causing the arteries to bulge. She explained to me that it is not something that they see a bunch of but they have dealt with these cases before. What this means was devastating to me, and I broke down and had a good cry. Basically we will not get to hold Parker after he is born, he will go straight to Cath lab for his first procedure right after birth. She told me that they will balloon the opening to make it bigger so the blood flow is better for his tiny heart. It is completely devastating to think of not getting to hold my son for possibly a very long time. 1 appointment down 2 more to go....

P.S. during the echo he got the hiccups and I got to see his little body jumping on the screen it was so cute and made me giggle!

We were then on our way to our next appointment which was in a completely different hospital about a good 20 minute walk away, Im telling you this place was enormous. By this time it was about 1130 we hadnt eaten or drank anything all day and I was already drained. This next appointment was for a routine ultrasound to check his growth. He is growing very good, the lady said that he was around 4lbs 2oz which is a very good size for 31 weeks. Im hoping he continues to grow and gets stronger as my pregnancy continues. He is going to be a chunky monkey, and you can see it in his little cheeks. He is so stinking cute! She gave me lots of good pictures of him and he even has hair! I love this little man so much already and cant wait to meet him soon.

Our next appointment was with the Maternal Fetal Medicine which is the High risk doctors that will deliver him. It was just a routine pregnancy checkup weight, measurements and urine samples. We waited FOREVER in the room for the dr to come in. We were so irritable at this point and my mom actually had to go tell the drs to hurry or we were going to leave LOL. It was after 2 and we still hadnt ate anything all day and they were in no hurry to get us out of there. I was very disappointed because I thought they were going to give me a date or at least an idea of when I would deliver but they said we would set that all up the next time we were there. Our next appointments are in about a month so end of November sometime and Im already dreading it. Just being up there really makes everything such a reality for us. That will be what we call home very soon.

I just sit and wonder how I will ever make it through this. People keep telling me that I am so strong and holding it together so well but I feel like a complete train wreck. I would not wish this on my worst enemy, sometimes the pain is so unbearable. I am so thankful that my husband has been right by my side through all of this and I hope that he continues to be strong for me and our precious son. I thought I was prepared for this trip but once we got there I realized that nothing is going to prepare us for what is to come. Its going to be a very long emotional road. I feel like I cant do this anymore and I just want to wake up from this ongoing nightmare. I hope that one day I will look back and be able to say that wasnt so bad and it was all worth it. But right now getting from one day to the next is such a struggle.

Here are a couple pics of the precious man, they arent very good because they are just pictures of pictures but they will have to do for now...

Monday, October 25, 2010

Lots of appointments this week

I am so glad last week is over, I feel like we are always getting handed more obstacles in this already hard road we are traveling. Last Friday our Jeep broke down so we took it to the shop on Monday only to find out we have a cracked head that would cost around $2,000 to fix. So after taking off of work Monday night to lay around, cry, and feel sorry for myself (LOL) we decided that our only option was to shop for another car because it wasnt worth the money to get fixed and we were down to NO vehicle at this point. So after bumming rides to and from work to pay bills and to walmart all week (thanks to everyone that helped) we finally went car shopping on Friday and found something. It wasn't what we were looking for but we got a great deal and it is way more reliable than the Jeep was and has way less miles. Looking back to last weekend I was a crying mess and thought the world was ending all because we had yet another challenge to face and WE MADE IT! I am so thankful that my hubby is behind me and lets me cry on his shoulder every night because without him I know I couldnt do all this on my own.

This week is going to be stressful as well, we have our appointments in St. Louis to meet with the doctors that will be delivering Parker. We are leaving on Thursday afternoon so that we can be there bright and early Friday morning for all of our appointments. We will be having a fetal echo done first and then an ultrasound. And then that afternoon we will be meeting with the high risk OB doctors that will be delivering the baby and taking care of me. I know that I am going to be a nervous wreck and probably cry way too many tears but I feel like I cant hold it all together lately. I just hope that everything goes well and that we don't get anymore bad news while we are there.

To all the other heart moms....what questions should I ask the doctors when I am there. I feel like I have so many questions and concerns but don't even know where to start. Is there anything that you think is important that maybe I wouldn't think of? I am getting so nervous and scared! Time is flying and I feel like I am running out of time. Also St. Louis is about 4 1/2 to 5 hours away from home, to all of the moms that delivered so far from home did you move up there a couple weeks ahead just in case you went into labor early? I have been worrying a lot about this lately and want to be as close to the hospitals as I can when the time comes.

I will keep everyone updated after my appointments on Friday and hopefully have some pictures of the little guy I am so excited to see him again!

Saturday, October 16, 2010

What is normal....

Today was a tough day for me, I guess its the pregnancy hormones or the reality of everything finally catching up to me I dont know. It seems like things will never get easier its always one thing after another. We have our appts. set up in St. Louis on Oct. 29th for the fetal echo, an ultrasound, and to meet with the high risk OBGYN that will deliver Parker. We decided since we didnt have anything going on this weekend we would use it to our advantage to get a few things taken care of before our trip to St. Louis in a couple weeks. First on the list was to get new tires. The ones we have are going bald and we are in very much need of new tires but just havent had the money to get them. Tires are so dang expensive for what I dont know but geez give me a break I know they can't honestly be worth $128 a piece. Anyways....we found some tires for a very decent price finally after calling every place in the phonebook and we were on our way to get some new tires. Wouldnt you know that the Jeep decides to overheat so bad that the check engine light starts flashing and the check gauges light comes on. We had to pull over on the side of the road and finally made it back home after having to stop 2 more times so that the engine wouldnt blow up on us.
We just had problems with the Jeep overheating and got it fixed a few weeks ago but this seems to be a whole different kind of problem. We have been stuck at home since 4:30 this afternoon with no way of going somewhere if we wanted or needed to...
     So in the middle of all this happening and trying to make it back home my husband was frustrated and yells..."why cant my life just be normal" I didnt know what to think, I hurt so bad because I feel like I've done something wrong to give us all this bad luck lately. Im the one that pushed so hard to keep trying for a baby, Im the one that didnt want to give up even though the drs told us that we would probably never be able to conceive. And now we are the ones that have to learn how to live a "normal" life with a heart baby that is going to need a ton of special attention and care. I know Adam didn't mean anything by what he said, and all of us say things out of frustration but man it really hurt me today. I just want to give him back his "normal" life and I cant.
     I guess we will learn our new normal as everyone keeps telling me, but when will things ever get better or at least easier to deal with? Finding the new normal comes with so many mixed emotions and sometimes I dont want to get out of bed and deal with it. Tomorrow while my mother in law is having a baby shower for her niece whom is due a couple of weeks after me, I will be at home making signs and posters for our Softball Tournament Benefit next weekend. Sometimes it all just seems so unfair.
      I could keep rambling but I think everyone gets the point. Its just been one of those days, I should of stayed in bed and watched tv all day. Dont get me wrong I love Parker so much already and wouldnt trade him for the world but I still keep asking myself why, why, why?
     I'm off to bed where I will lay there and wonder, What is normal?

Friday, October 8, 2010

Wow what a week, Im so glad its over and I get to spend the weekend with my wonderful husband. I have cried so many tears this week for 2 new angels Joshua and Ewan. I have been following both of these blogs since the diagnosis of our little Parker and it is so heartbreaking to see these families struggle. I know that we have a very long road ahead but I just have to keep my head up and know that no matter what happens I have wonderful friends and family to stand behind me for support.

Not really much to update I have to go to the dr this afternoon for my diabetes test, blah. Not really looking forward to that people keep telling me how nasty that stuff is you have to drink. I also hate the thought of not being able to eat for 2 hours prior to the test because I know I will probably be starving just knowing I cant eat! Haha I also have to call the drs in St. Louis today to start getting appointments set up for when I will be visiting to tour the hospital and meet with all the surgeons. I am ready to get the ball rolling but at the same time its so scary to think that I will have a date of when this little guy will arrive. It seems like its getting so close and I still feel so unprepared for what is coming.

Thanks to everyone for all the support this far, I am so grateful for all of the friends and family that have been there just to listen to me cry. I know I'm becoming such an emotional wreck lately and I apologize, I will just blame it on the pregnancy...well its off to bed for a few hours before I get up and head to the Dr
Good Night

Tuesday, October 5, 2010

After a hard day....

Today has been hard for both me and Adam. I think the reality of everything is finally hitting us. After we learned of baby Ewans passing yesterday it really hit home for both of us. I just cant understand why babies have to go to heaven and be taken away from their parents. Even though we are trying to stay positive it so hard not to think of the reality of our situation. Someday I hope that we will be able to look into little Parker's eyes and know that everything is going to be ok and that he will fight through all of this but right now the unknown is too much to handle.

After a hard day of sitting and wondering why us and why our innocent baby little Parker showed me a new first tonight....he got the hiccups! It was his little way of telling his mommy and daddy that even though there will be lots of "hiccups" along the way that we will make it through this and its all gonna be so worth it when we finally meet him.

Friday, October 1, 2010

Please pray...

Another blog that I follow baby Ewan isn't doing very well. They have put him back on ECMO and his parents are going to have to make a tough decision really soon. I just pray that this little guy has it in him to keep fighting, it is so heart breaking to see what these little babies have to go through. I know that we will be traveling this road very soon and its so hard to see when the other little ones are struggling. Just keep Baby Ewan in your prayers and hope that he can pull through this.

Sunday, September 26, 2010

Another week

I always dread Sunday nights and going back to work on Monday. I always become a crying mess as we lay down to go to bed because I know I'm starting another long week full of lots of questions from people who just dont understand. I hate being away from Adam, I feel so much stronger when hes with me. When I'm at work I dont have him to hold my hand while I explain our sons tragic situation to everyone who asks. I get so tired of people telling me everything happens for a reason and everything will work out because the reality of it is that everything isn't ok and I feel like I'm dieing inside. When Adam is with me he understands how I feel and can support me and answer all the questions for me, I feel like I don't have to be strong when he's with me because he is there to be strong for me. Sorry to be a Debbie Downer I just hate Sunday nights and it feels good to get it off my chest.

On another note while I sit here in front of the computer Parker is trying to push himself out of my belly button!  He is getting to be such a strong little guy and kicks me all day and all night long. Some of his kicks and jabs are so strong they take my breath away, I cant imagine what it will feel like when he gets bigger. My pregnancy is still going well as it has been throughout the whole thing, its so hard to believe that I'm already 26 weeks and 4 days. I cant imagine how my belly can grow any larger as its already getting uncomfortable to do much of anything.

Well we are off to lay in bed and watch some tv before we fall asleep Good Night.

Saturday, September 25, 2010

Went to my regular checkup today. I am measuring 2 weeks ahead of normal so I'm hoping for little Parker to be a big guy. The bigger he is the better for the surgery. Heard his little heartbeat, it sounded so strong and it breaks my heart. I know it might not make sense to anyone else but hearing his heart beat is the worst part of our appointments. It always makes me cry just knowing that its ok now but once he is born then it will no longer work like it should. It makes me wanna keep him inside of me forever just so he is safe.

The dr also told us today that she has a friend who is also a nurse in Joplin and she has a little boy that is 2 or 3 years old and has HLHS. She asked if it would be ok to give our phone number to her so that she could contact us about any questions or concerns that we may have for someone that has been down the road were getting ready to travel. I was so thrilled to know that there is someone else in our area that has been through the same thing and I cant wait for her to contact us.

Not really much more to update the appointment was very uneventful. We go back in 3 weeks and they will have information on the St. Louis hospital for us and let us know when we will be traveling up there.

Good Night

Wednesday, September 22, 2010

Another beautiful poem

                                           When I Became a Heart Mother.....

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick...
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong.
It seemed my heart was breaking...
As, I'd loved him for so long.
I will not give up on this child...despite your best "advice".
I will give my child a chance...No matter what the price.
And I will learn all that I help my child to thrive.
I'll even use that feeding tube...
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this...I will not curse our fate.
The feeding pump beeps, at 3:00 a.m.
It serves as my reminder...
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings...
and I run to my sleeping child's bed...
I watch him then, for quite awhile...
Bend down and kiss his head
Then I cry for the parents whose lives have been broken,
And I look to God wondering why?
Oh Lord, I just can't know your ways...
No matter how I try.
And yet, I trust You to hold his life,
And guide us through each day
My mind says savor each moment he's here...
But my heart whispers,
"Please let him stay".
From... pacing the surgical waiting room...
to sitting by his hospital bed...
From... wishing for a good night's learning every med...
From wondering will he be alright?
To watching him reach out his hands.
With every smile, my heart just melts.. despite life's harsh demands
For all who see that faded line...I look to them and smile...
You see, my child is loved so much...
I would face any trial.
That same scar I trace with my finger...
It's the door to his beautiful heart
I never guessed how much I'd love him...
Just as YOU loved him right from the start
A heart mom is always a heart mom...
Now wise beyond her years
And for those who have angels in heaven...
Our hearts share in all of your tears.
Everyday I will strive to remember...
You chose me for him and no other
And I will embrace that beautiful day...
When I became a "heart mother".
~Stephanie Husted

Temporary Home

We made the trip to Springfield to the pediatric cardiologist today Dr Alan Tong. He was amazing I really liked him and look forward to my son meeting him someday. He didnt really give us anymore info that we didnt already know (weve done tons of research) but it was nice to know that I will trust him for the care of my sons little heart when the time comes. He has other patients with HLHS and thats also comforting to know that these children really do have a chance and that there is a light at the end of this very dark tunnel.

He recommended us to St. Louis childrens hospital over Kansas City because they have a better success rate with this type of open heart surgeries. We were hoping to be in Kansas City because it is a little closer to home but whatever is better for our son is what is most important. So it looks like St. Louis will be our temporary home for HOPEFULLY just a short amount of time. Dr. Tong told us that generally these babies will be in the hospital for a month and that most of the time feeding issues are what keep them in the hospital rather than complications from the heart surgery.

We go back to my regular dr on Friday and they will start things rolling on setting up an appt. with the drs in St. Louis. We will be making a trip up there before the delivery to tour the NICU and be meeting with all of the drs and nurses. Ive felt so overwhelmed today thinking about being away from home for such an extended period of time. I hate the thought of not having the comfort of my own house, my own bed, showers, toilets the list goes on and on. I dont want a temporary home, I want my home and my baby and everything to be ok.

I will hopefully know more once I go to my dr on Friday. Im ready to get my appts set up in St. Louis so that we can meet with all of the drs and nurses that will be caring for our son. Its been a long day and Im so mentally exhausted Im going to bed Good night!

Sunday, September 19, 2010

A beautiful poem

I found this poem on another site written by a father I thought it was beautiful

My Son

My Son was born on a warm summer’s day
With me pacing the floor in a proud dad’s normal way
Not knowing of challenges that were still yet to come
That would change my life in more ways than one

Holding my son for the first time I cried
Thinking of all of the years that his mommy and I tried
Still not knowing how sick and tired he would be
After his heart was wearing out even before week three

We were going home and it was just a day away
When something happened that almost ended our day
The doctor came in and showed us his heart
The news was so shocking it tore my life apart

The shock so horrible and the news so bad
My life was now ending I was wishing that it had
Our journey had begun one we didn’t want to start
How a boy as sweet as him could be born with half a heart

It must be a bad dream and it can’t possibly be fair
For a moment life stood still as we looked with a blank stare
I was numb all over and my tears dried on my face
Our doctor had informed us to get ready for the race

It would take our emotions from valleys to peaks
One day we are happy to the next no one speaks
We prayed God would show David mercy and grace
As we sat down to ponder with a look of fear on our face

We made it through the Norwood with help from up above
God surrounded us with people that we would grow to love
Those people were doctors and nurses and family and such
That showed our family they cared with the love in their touch

After a month of a struggle for our little guy
We were allowed to take him home with a gleam in his eye
I remember like it was yesterday as I welled up with tears
My eyes kept filling up it seemed like for years

Happiness filled the room as we started to pack
Still not knowing the future or what to expect
I gained my composure and prepared to go home
Not knowing it had changed me and my life yet to come

For you see spreading awareness has become my whole life
Not wanting a parent to have to suffer this strife
We have been through so much I still think we have won
Because everyday I wake up I still have MY SON


The purpose of this blog is to keep our family and friends updated on our son, our feelings and emotions, and our journey as it progresses. Thanks for all of the support that you have all provided up to this point it truly means so much. I know that without you guys we wouldn't of made it this far.

Our next appt. is Tuesday, we will be seeing the pediatric cardiologist in Springfield and hope to learn more about the current diagnosis. He will be doing a detailed ultrasound of the babies heart and then we will talk with him about which hospital he thinks will be best for us and our unborn son. We are currently looking into either Kansas City or St. Louis not sure which one yet. Its going to be a long hard road but worth every second once we get to hold him for the first time. I will keep everyone updated as more information becomes available to us.

There isn't alot to update on right now except that after so much going back and forth we have FINALLY named our little boy. Since Adam love Jaxson so much we have decided to give our son 2 middle names. The newest member of the Everett family is...Parker Jaxon-Phoenix. As if the little guy doesn't have enough problems we give him a name that is complicated as well! I guess as he grows he can decide which middle name he prefers (I secretly know he will choose Phoenix).

Well its about game time and I need to feed this little monster inside of me! Little Parker is going to need some energy for all the cheering he is about to do, I already feel him stretching, kicking and jumping in preparation for the Chiefs next win here in a few hours!!!