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.