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.