Today I spoke with Katrina our insurance coordinator, she reads the doctors notes and then calls me to follow up, make sure I'm doing okay and to let me know that everything is set for delivery. After speaking with her I am a little more nervous about the baby's heart, she read to me the list (I'm not kidding) of heart problems our son has... when I was there it seemed to only be the CoA that was an issue however in the notes there are comments about a Hypoplastic valve, a larger side, the Aortic valve being an issue and it seemed like the list went on forever with terms that I do not understand. I am starting to worry that this is something larger than the cardiologist wants to inform me about. At my appointment with Dr. Rose she also mentioned that this is not a 'textbook' heart problem and he doesn't have a specific diagnosis. I guess more and more I am nervous that this problem is larger than the doctors wish for me to know at this point. I keep asking 'will I be induced?' and if so 'when?' it seems that there is not an answer for this, not all the doctors are on the same page. I am scared to death that I will go into labor and there will not be a doctor at the U that has seen this before or someone who doesn't know how to start the line to his umbilical cord or I don't know the list of everything that can go wrong. I have an appointment on October 30 and I hope to have an induction date at that time, wouldn't 11-10-09 be a cool birthday?
Something else that has got to me lately (as I'm sure other heart parents can concur) people almost act like this isn't happening or 'it's no big deal'. I keep being asked about Thanksgiving and Christmas and all I can say is 'I'm not going to be involved in either this year, just count us out' I feel guilty but that's all I can do right now. My son will be in the hospital possibly for both holidays and HE is the most important HE is the one who needs me and his father. There will be many more christmas and thanksgiving hoilidays. My son will be fighting for his life, my son! Or other expecting parents that are so concerned about the child's room or what outfit will be worn home from the hospital - While us heart parents wonder when that wonderful trip home will even be? Who cares what he wears just let him come home with us! Our baby's room isn't even near done everytime I look at it I think when will he get to see it? how old will he be? Does it really matter if the curtains match?
I guess I feel a little better after that vent, I apologize for any feelings that have been hurt. I love you all and appreciate your concern. With that being said though, please please do not worry about our family on Thanksgiving or Christmas we will make it the best holiday we can, even if it is just the four of us. :)
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Sometimes not knowing everything is nice. . . but you sound like me and have to know EVERYTHING! That is one thing the heart mommy journey teaches you. . . one day at a time. I am sorry it is heading into the holidays, but I have a feeling you will grow to appreciate the "real" meanings of the season this year. You will do great. . . Best wishes.
ReplyDeletePS: The other thing heart mommies learn is that even if they tell you its a textbook diagnosis, it usually isn't. MOST heart babies have their own little configuration in there. They will know better when he is out :)
Dearest Chelsey! I so know where you are coming from. A few things that might help you are- everyone, and I mean everyone will know that he needs a central line through his umbilical cord, it is something that they do with EVERY baby that goes into the ICU at birth because it is so much better than any thing else they can do. Also its the very best vein in his whole body, the rest are pretty tiny and collapse easily(Coulton kept having to have them in his head). Also there is always a cardiologist that is at the hospital that will be briefed on your babys condition. They meet at least once a week and talk about every baby so that everyone knows what is going on. Lastly, its ok to not want to worry about the holidays, they really don't matter. If the rest of the family doesn't understand I will make sure that they do! Nothing is going to be more important than your baby and they are just going to have to understand that. Especially when no one gets to see him for a long time (I am sure that you will be quarenteened until after flu/RSV season) it will all be worth it because he will be ok. I know that I was worried about the scar, in fact it was probably my biggest worry for the future after all of the other stuff was over. Lexi would be happy to show you her "zipper" if it would help, but we have always told her that it is somthing that makes her unique and special and that not very many people get to have "zippers"! (In fact I think that Lexi is going to be excited that someone else is going to have one too!) We love you guys so much and you will be fine, belive me its all going to be fine:)
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