I had what I thought was going to be my last echo today, and it turns out rather than giving me the thumbsup, or the a. okay, I was told I am going to see some higher specialists to determine what we are going to be dealing with when we have this little girl.
I have a diagnosis. It is called: Coarctation of the aorta.
The whole time they were telling me that the ductus arteriosis was looking larger than it should be, but that it is only a problem when the aorta has a narrowing, and I didn't have a narrowing at the last appointment, but that they would want to see me again to be sure that the narrowing didn't start to happen. It happened.
So...they wanted me to see this specialist from Portland that comes down every month, and she would be there the week after Labor Day. I had to remind the specialist that I would be having my c-section about at around that time, give or take a handful of days. He asked me if I minded traveling up there, and I said no, that I need to know NOW what I am dealing with and wanted an appointment up there.
He started talking about what would happen, and what to expect from this appointment.
The specialists up there will perform a very thorough echo, and then talk to eachother about what they think is going on with her heart.
If they think that she will be able to tolerate birth here, and have surgery later they will allow me to deliver at the new hospital and then travel back up there to perform surgery at a later time.
They may look at it and decide that she will need surgery within hours of birth, and in that case, I will need to deliver in Portland. This is when I started to cry. I asked him if I will be able to hold my baby after giving birth to her and he said I should, but that she would require care right away. I asked where I would stay, he started to talk about the Ronald McDonald House. The tears started flowing at that point and didn't stop.
I kinda went off on him. I said "Do you know how uneasy it has been to be pregnant for the last 4 months and NOT KNOW what is going on with my baby? I am so tired of all of the ifs, ifs, ifs, ifs.." He actually put his arm around me and just said that I am a grey area patient and as much as he wants to tell me she will be fine, he can't confidently tell me that. He still says that there is a chance that the head honchos up there will look at her heart and not see that this is anything major at all, and that by the time I see them, things could be changed.
I doubt that, but I have to trust that anything is possible.
So Doernbecher's called me within an half of an hour of coming home, and they have booked me for next Friday the 22nd. Mike will take the day off and we will go together, and his momma wants to come too.
I don't even know how I am supposed to pray about this. I am feeling guilty for praying for her to be completely fine. What if this is God's will? I don't want to pray against his will. What if she is meant to have this heart problem to bring all of our family together, and to show how strong we all are..I feel selfish then for praying for her to be fine. I have a hard time with this stuff. I just pray that he will lay his hands on us during this unpredictable time in our lives.
I can't even tell you the things I worry about as they go really deep. What if I don't get to hold her and she doesn't make it through surgery? I am so scared.
7 comments:
Oh Heather, I am SO sorry. I really have absolutely no words. You guys are in my prayers though and I have faith that your precious little girl will be fine and that at the end of this tunnel, like you said, your family will be stronger. Katelynn is a lucky little girl to already be so loved and so adored and also to have a very special guardian angel in Mike's dad looking out for her too. Hang in there ...
Love you, Heather. T.
OMG I'm just crying right now. I'm so sorry you are having to deal with this now when you are so close to holding your baby girl. Keep the faith girl, I know you guys will get through this. There is nothing wrong with praying for baby K to be fine. And she WILL be either with the surgery or without.
Much love!!!
I am so sorry Heather! I will be praying everything turns out fine. You will get through this, and know that you can call me or email me or text me any time! Love ya lots!!!!
Heather I am so sorry you are going through this. I am praying that everything turns out just fine. You will get through this! We are all here for you, and you know you can call me, email me, or text me ANYTIME!! Love ya lots!!!!
Heather, you are a strong woman. I know you don't think that about yourself, but you are. You are being tested right now and you will prevail. If Katelynn's condition is as serious as they think it COULD be, then you will be relieved to know that there are specialists right there at the moment you give birth, to care for her.
I know the self-derpricating stuff is hard to avoid. You feel guilt, disbelief, anger, all of the above all of the time. You know what that means? YOU ARE A MOTHER. Your baby girl will continue to be the center of your life, as Matthew is.
Keep faith. And God is ok if you're pissed at him or pray against his will.
Also, I wanted to share that you should absolutely talk to the social workers they have available. I know I'm a little biased, but they are there for a reason. They will provide you with moral support, diagnostic information,etc. They can also connect you with other family's going through the same thing, should it be the case.
I'll be thinking of you soooo much!! HUGS.
I'm so sorry H. I'm only just now getting round to read this and I'm really sorry. I hope since this post youve had a chance to find out more, got more info and it helped. I wish I could give you a huge hug, I want you to know I am thinking of you and that fabulous little girl and if theres anything I can do for you, just say so.
m...x
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