Thursday, August 27, 2009

Pounding On Gods Door

Yesterday was a long, long day. I went in for my appointment at 1:30 and did not leave until 5:00 pm. They scanned me for 3 hours.

It's not good.....

Our baby is very sick......
I am not sure that I have wrapped my brain around all of that has been thrown at me in the last 24 hours so I will start with the facts.

The baby has significant congenital heart disease.

As she scanned me, she stopped, looked at me and said, "I want you to know you will leave here with information but there is a problem." The room closed in around me and I was less than seconds from passing out. I could not breathe. Tears immediatly flowed. She told me that there were things she needed to get to better determine how to help the baby and so I looked at my husband and asked him to help. Never have I loved him more as tears filled his eyes trying to be strong for me. It was happening all over again.
As of what we know now, the baby's heart is bad. The right side is much larger than the left side. The left side has not developed as it should, is scarred pretty badly from having to work so hard to keep going and is getting very little blood flow. The baby continues to grow because s/he is in my belly and has me to help, but the moment we cut his or her umbilical cord (a day I have suddenly come to dread, I wish I could help forever) the baby's heart is NOT in fact healthy enough to take over. The moment we cut the cord, we have approximatly 8 minutes before our baby cannot breathe. That being said, I am headed to St. Pete either Friday or Monday morning to see a world renowned cardiac fetal surgeon. He will reevaluate us there. Re do all of the testing and pinpoint exactly why the baby has heart disease, whether it be a valve problem an aortic problem or whatever. The heart is complicated and messy so he has a lot of work to do. He will then determine when we should deliver and I will be delivered in St. Pete where they are prepared to do whatever intervention is neccessary as soon as the baby comes out. Surgery is more than likely (hopefully it is an option) depending on what it is exactly. We may put in a heart catheter to buy us some time. Honestly, until I see the surgeon I know very little about the baby's prognosis (outcome) I am desperate to get there to find out if we have a shot in you know what of saving our child. I am angry. I am sad. I hurt for my kids who will not understand the changes and why Mommy is gone. I hurt for my husband who is dealing with this the best he knows how, since the rug was ripped out from under him. I hurt for my baby who will likely go through many, many procedures, who will be whisked away from me the moment I meet him or her. There will be no sweet cuddling and nursing as every Mother imagines just post partum. I am sad for me, sad that I can't seem to get this right anymore. I wonder if we pushed our luck wanting a big family and yet others have so many kids. Some have none. This is out of my control. I sit here in the early hours grateful that sleep did in fact come to me last night, knowing that we have a long, long month ahead of us until our baby is born and who knows how long after that. I will have two babies here at home and one in the cardiac intensive care unit in St. Pete undergoing who knows what for however long, if all goes well. Funny, if all goes well, means the baby is in intensive care, that doesn't make sense, but I can't say what is really intended to go there. I am trying to stay positive, although fear has gripped every ounce of my being. I am reminding myself that I can do nothing but be where I am told to be and to let them do what they need to do. I am learning more than I ever thought I would, how to hand over the reigns, with myself, my boys, my baby. I am having to ask for help and I do NOT like having to ask for help. I am going to have to lean on those around me more than I ever have before, I have no choice. I need help. Help to keep my family going while I am delivering and while I stay vigil at my baby's bedside in St. Pete, all the while my heart aching to be here with my boys. How, how, how is this happening. We made it to 32 weeks with what appeared to be a beautiful, big healthy baby. I let myself finally get excited. I prepared. I am sitting in his or her nursery in the dark as I write this wondering if I will ever fill it with my baby's presence... This is so hard and yet it's not up to me. I wax and wane through self pity and knowing that God has a plan. I am pounding on his door right now begging for my child. I pray and pray and pray some more. It's all I know to do as the waiting game has begun...I am wondering the lesson in this year we have been handed. I wondering where we will be next year at this time. I am wondering how to prepare myself for what's to come. I beg of anyone who reads this, please take a moment and send a prayer out for our baby. We did find out the sex. As I write this I know the gender of our baby. It was a decision we did not want to make. We wanted a normal delivery with the most precious surprise waiting at the end, but unfortunatly life had other plans for us. I decided that I wanted to know. The baby is going to be whisked away from me moments after I see him or her. I do not know the outcome of this delivery and because of that I wanted to know so that I could have that one last connection with the baby, knowing who he or she is these last weeks in my belly. I want a name with the face, the kicks, the hiccups. When I talk to him or her, I want a name. When I pray I want a name and we have one. That will be another post, very soon, where I will celebrate the gift that is inside me for today. I don't want to share that news as I write what I have written above. So stay tuned because we have a long road ahead of us. Writing is an outlet for me and I know as the days inch closer to meeting our baby and as the anxiety builds I will be writing more and more. If you would like to hop on for the ride, we would love to have you. We are the Wild Wild Wests and by golly that names suites us more and more, all I ask is that you pound on God's door with me for our baby and for others who are walking this dark, scary unknown path.

"God grant me the serenity to accept the things I cannot change"

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lysa simpson said...

oh my god! I am so speechless at this moment but want you to know I am praying for you. I love you, Lysa

Hilary said...

Tears flow and my heart just completely aches for you.
Please know I am pounding on God's door as well...for this precious baby, for you, for your family.
I wish I could make it all better.
I wish I could give you a big hug and just be there for you.
I am so sorry, Jenn.
I am here for you in any way that I can be.
I am praying, praying, praying!

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