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...


  1. sounds almost to a t like my first visit!
    i hope you continue to stay strong and you are doing amazing i cant believe he is 4 pounds thats great! huge hugs we are going to get through this!

  2. I soooooo know the feeling. :( I'm actually so sick of people telling me I'm strong! I'm SO NOT STRONG! I break down all of the time and don't know how I'm going to do this either. We don't have a choice. :( I got ZERO sleep last night because I'm terrified of what's to come that's getting closer so quickly. We've been getting the house ready and it's making everything so much more real. :( I HOPE you get a date scheduled soon. Just so frustrating that you have to pull teeth to get any information about dates like that and they don't realize how vital that info is to people. I just found out last week that my repeat csection will be on Dec. 23. My due date is officially 12.30. I have 2 more echos before then 1 the day before Thanksgiving and the other a week before his birth. Then they will determine if I have to deliver right in the cath lab so that he can have the procedure right away as well. :( Our reason is a bit different. They're saying it's due to a restrictive foramen ovale. I'm so sorry that your echo was so long and painful. That seems torturous to me. :( My scans are a tad long but haven't been painful although last time my silly baby was in such a position that I had to lie on my side for them to get the best view of his heart. Well, I want you to know that I am sending you big hugs from Chicago and also that you are not alone in your journey. Maybe one day our boys can meet and play together. Wouldn't that be the BEST?! Prayers for their strength and ours always!! <3 <3 <3

  3. Not sure if you know, but Kathy Baker's son, Jacob, had atrial septum issues and was cathed after birth as well. If you haven't talked to her and have questions, I'm certain she would answer them for you. She's a great source of information re restricted atrial septum issue/complications. Just thought I'd let you know.

    Kathy had Jake a little over one month before Zoe arrived. I remember her telling me, as my anxiety grew each day, that the anticipation and waiting is the worst. She was right. Try and relax (easy for me to say on the 'other side') these next several weeks. Parker is safe and sound inside your belly. Once he's born, you'll be strong. Somehow, we seem to find the strength in those times of need. Perhaps its survival instinct, but we all manage to dig deep and find that extra gusto. You'll do great. Breathe.

  4. Oh hun I remember all to well how horrible those appointments were and how scary it is. Jacob had a restricted septum. Actually they thought his would be fine but it became completely intact after birth so they had to rush him to the cath lab because his lungs were flooded with blood. It is good they are prepared to take him to the cath lab already. If they had taken my Jake immediatly he would not have gotten so sick. Anyway, I didn't hold him until he was 9 days old and I won't lie it was hard very hard but it was also ok and he is doing amazing right now. There is hope and its true that the baby is so small they don't know what is going on nor will they remember. Jake is 7 months old now... I never imagined time would go by so fast. He is smiling, growing great and just a normal happy chunky baby. Don't lose hope hun, its good they found it early. As hopeless as it seems its not. The unknown is the worst part.

    Jacob's whole story is at

    Please write me anytime if you need to talk, ask questions, what ever. I am here. Everything your feeling is normal. My advice, try to rest. I feared so much but learned even when my biggest fears happen it can still be ok. We are not in control but your giving your baby the best chance possible and tahts all you can do.

    Heart Hugs.

  5. I wish I could give you the biggest hug! I know exactly how you are feeling. I remember feeling the same way. You don't think you are strong, but when you look back, you'll see the strength everyone is talking about. You have all of us other heart moms who are here for you too! Keeping you in our thoughts and prayers,

    Jenny- mom to Aly- HLHS 16 months

  6. Lots of hugs! We are all here for you and praying like crazy for you guys! Like the moms mentioned before, the strength to get through it will come when it is needed...PROMISE!! I know it's overwhelming, but taking it a day at a time is all you can do.

    The pics are precious! He looks like such a cutie!!

  7. I found your blog by way of my nephew Damon's blog. As just an Aunt, I know it is not the same, but let me say this: You will get through this. It will be tough and the road is long, but not impossible. "I can do all things through Christ who strengthens me" Phil 4:13
    Hang in there, because once you see little Parker's face, you will find the strength to carry on.

  8. Ann Frank said this 'I don't think of all the misery, but of the beauty that still remains.'

    All of these appointments and the fear of the unknown are sooo incredibly miserable, but keep remembering that beautiful baby boy, and in just a short while you will get to see him, to touch him and to love on him..try to focus on that.. because THOSE moments are the moments you will remember the rest of your life.. ((hugs))