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...


  1. Oh Heather, I'm so sorry you're feeling this way. But know that you are NOT alone in these feelings. My husband was much the same way as yours - he never really wanted to talk about Bodie's heart before he arrived. Men are just wired differently (some, anyway - mine definitely is). As women, talking through things and dissecting them from every which angle is what helps us to digest and cope with it. But for men, it's just not that way. That's ok. They handle things as they come and find the strength they need in the moment. You just need to make sure you find someone who you can talk to you about it (like us fellow heart moms!) Adam will be ok, whatever the outcome. And you both will be ok. You'll need to lean on each other, and on God (if you're a person of faith). The end of the pregnancy is the hardest part - once Parker's out, your attention will be focused on him and getting him better.

    I'm so sorry to read he has an Intact Atrial Septum. Yes, it definitely makes him more high risk and it will be an uphill battle. But I do know of HLHS babies born with intact atrial septums who did just fine as well. Just try to remember that every single one of these kids is different and they all chart their own courses.

    Praying constantly for you,

  2. Heather...I am so sorry you are having to go through all of this with your little guy. The appointments are hard and the echo was always the hardest for me as well. I hated hearing everything that was wrong and how sick Hope was at every appointment.

    I know the hospital stay and the thought of being at the hospital for a while seems daunting, but the time really does fly by when you are there.

    Amy is right...each of our little ones are so different. They all may have similar diagnoses, but are so very different. Intact atrial septums are not uncommon and while there is a higher risk...many do very well.

    You are in my thoughts and prayers.

    Have a wonderful Thanksgiving and fatten up your little man.

  3. Oh Heather- I wish I could just give you the biggest hug right now. I know how scary this all is- but don't give up hope. It is a blessing that they can know so much before Parker is born so they know right what has to be done as soon as he is here. It is hard not being able to hold your baby right away but things happen so quickly, like Paula said, the time in the hospital can fly by. I was so scared that I wouldn't be able to do it- but you get strength from somewhere down deep and you do what you have to do. Always keeping you in our thoughts and prayers. Don't let anyone discourage you- yes Parker is sick, but keep your faith and stay positive. You all can do this.
    (((HEART HUGS))))

  4. Heather, God knows your heart. He knew that when you were praying for a baby that you wanted a healthy baby. Because you didn't specifically pray for him to be healthy has no bearing on why his heart is the way it is.

    I don't ever remember specifically praying for Joshua to live. I prayed for mercy and healing. he got both, just not in the way that I wanted. It wasn't because I didn't ask though. God knew that's what I wanted. Sometimes he gives and other times he doesn't.

    Do you think your husband would like to talk to my husband? I know that Shane would love to be a support to him if he needs it. Just let me know and we can get them connected some how.

    I'm praying for you and will continue to do so.


    ps. I sent you a fb message. I hope you weren't upset by it if you have read it. I truly just want to help in any way I can.

  5. Heather,

    Jay (my husband would never talk about how he felt about Ella being sick and even after she passed, he just copes internally. I do remember the drive home after the doctor told us that we had 6 weeks tops left with her..I couldn't believe it, I was broken and couldn't think staight, and he asked me 'so where should we bury her' I freaked out bawling, but he wasn't doing it to be cruel, he was processing it way different than I was.. I think sharing with Adam how you feel and just assuring him that you want to know how he feels is the best thing..((which I am sure he knows))

    I think its natural to grieve for Parker right now, not that he is gone, but grieving the 'normal' have a baby, take him home and live happily ever after' I know that so many people are praying for you all, and one day, God willing, you will have that happily ever after, you all just will have a quite a fight before getting there...Ella wasn't a heart baby, but we've been through a similar journey, please don't hesitate to msg me or let me know if you need anything or to talk..