emotions on high

Today has been a rough day...I have so many emotions running on high right now im not even sure where to start this post. With the anticipation of delivery my baby girl four days from now, in what should be the most exciting time of our lives im finding it hard to stay positive. There are so many babies that are struggeling for their lives right now i cant even keep track. Its a fine line i walk down right now trying to keep myself and my family positive not only for our sake but for my babies. She needs to feel my confidence and positivness and sometimes that is SO hard to do. I am now a lifetime member of the "heart community" I am a heart mother for life and while yes that is a club nobody wants to be apart of it is also a club that is just what I need right now, inspiring, supportive, caring, and one of the most important things being they have been in my shoes and no what we are going through. Yet there are many times that it seems such a sad place and its so hard. I have met a lot of other heart familys thought this journey, and there are a few in particular that i have grown quite attached too. My friend Alexis is one, she and I met on the heart moms website about a month before her baby girl was born, in May of this year. Her baby girl Scarlet has HlHS like Ella and was born about three months ago. She unfortunatly was not a canidate for the 3 stage surgeries that Ella will undergo. And they were told after her birth that she would need a heart tranplant to surive, only they thought they had more time. Alexis her mother, and her husband have been so inspiring and strong throught this and have somewhat been my inpiration and what kept me going. Sadly now they are in a race against time for Scarlet to get her heart and reaching out to anyone that is able to help. This breaks my heart, to say my heart is heavy tonight is such an understatement, as I also have another friend of the family whos baby girl is critically ill, unrealted to HLHS. She too is at our hospital and has been there for the past 6 weeks and they are still unsure of her exact diagnosis and if they are going to be able to save her. I dont have the right words to describe my feeling right now, while i know how I feel I cant put them into words.( I have never been good at that) I want to know why, and whats crazy is I would still not change my situation for anything. Ella is my baby and I love her and will love her just the way she is and I will fight for her till the day I die if I have too. But I will always wish she were healthy and would not have to fight for her life so hard from the begining, every baby deserves a chance at a healthy life. We also had Ella's last drs apt today, ( haha last before she is born that is)and if i never stepped into another dr office again that would be just fine with me. Esp this one. Im so sick of the way drs offices treat patients. I know its there job and they see it eveyday but come one people we dont. I feel like they think im a crazy, paranoid, freak of a mother already. just beacause I ask questions and expect to get answeres that I can hold on too and that will be followed through with. Is that really so hard to ask? Im sorry this is there job, I didnt pick this for myself or my baby. So pardon me if I ask alot of questions or dont know exactly what you are doing and why, but we are scared and are trying to be as "prepared" as we possibly can for this. It also does not help to hear one of our drs tell us today, "well the easy part is coming to an end" - im sorry but how dare you. Nothing about this has been easy. Some may think that we have an advantage to knowing about Ella's condition and while thats true and yes we have had time to prepare and we are thankful for that, it DOES NOT make it any easier. We have just been dealing with it for longer, we have had more time to process it, yes. But that also means more time to over think and worry, and alot less time enjoying our pregnancy.It doesnt change the fact that our daughter is extremly sick and will fight for her life from the second she is born. A little know fact: babies are born with a Heart Defect every 15 minutes. More of our children die from CHDs than ALL of the childhood cancers COMBINED!It does not change that fact either! I have felt so cheated when it comes to our pregnacy and now with the final staw being a C section, i feel even more cheated. I know alot of people have C sections, some even choose them, but its not what we wanted. Giving birth to my baby is an experiance i have always wanted. But this CHD has taken that away from us too.
Wow anyways, with all that said we have so much to be thankful for too. Ella's NST went well today ( non stress test) and although her heart sometimes diped into some rather uncomfortable numbers the drs feel she should still be ok to wait for delivery on the 13th. She is estimated weighing in at 9.14 right now ;)go Ella go!
Believe it or not I AM really exicted about bringing this baby girl into the world and sharing her with all her loved ones. She already has such an amazing army of people out there cheering her on and we feel very blessed. We are looking so forward to this next week, starting with this weekend when my sissy, John and my sweet baby neice (that i know will make me happy) gets here! They will be here sat and staying here until Ella arives! If there was ever a time i need my sister its now. Her support though this has got me through some of my roughest days, she has the kindest heart and soul and I am so lucky to have her by my side. Also exicted for my brother and sister in law to get here this weekend, coming from Utah for a few days! And then the rest of our family throught the week. So this weekend will hopefully be full of much needed distraction and happy times, which is just what we need right now heading into this week, a week full of lots of unknowns, excitement, family, love, and prayers! We are all going in with our boxing gloves on and you better bet this is not a family to mess with! Gonna fight for this baby girl with all our might. ;) To end this rather long and (im sorry) somewhat depressing post. ( although i might have to add here as i was reminded by my sister tonight, these are my thougts and feeling and no one HAS to read this, right?!) I would like to just remind everyone how blessed we all really are. I know we all take life forgranted at times. We get caught up in petty things in our lives and forget what is really important. I am just as guilty for it. Most of the time we dont see how petty we can be until something horrible happens to us ourselves and we are slapped in the face with it. Just please dont take forgranted the "small" things in life, those things you never knew you needed until you dont have them anymore. I hope everyone has a great night, hug and kiss your loved ones extra tight and tell them how much you love them as we all should do everyday.