fasting, pre-op, surgery, home

So trying to fast a 10 month old isn't the easiest thing in the world, she looks up at me with those baby blues like momma why aren't you feeding me.. broke my heart into pieces.

Pre-op was a long long day, we meet so many people, she had to go through so many tests, and we were given so much information, but not much had changed since her first echo cardiogram, besides the smallest hole she had in her heart had closed on it's own, but everything else was the same, which was a good thing. We were pleased, now for us to go home and try to have a good weekend.

Saturday we decided Tagen needed some alone time with his us, so we took him to chuck -e- cheese, and then to jaygees. Our mind was still on the fact that this surgery was in 2 days but we put it aside to give Tagen some attention.

Sunday we packed and got things ready family and friends visited to say good luck. I kept it together all day until we started to say goodbye to everyone and get into the car I lost it, this was reality I was really driving to put my little girl through pain, although I knew it had to be done. I don't think anyone in my position could eat Sunday night or sleep.

Monday morning I was dry heaving for about 2 hours, I was sick to my stomach I wanted to run away, I just wanted to get on a bus or in a taxi and take off, but I didn't... The next hours where the ABSOLUTE WORST for me. We were in a "holding room" where they had us change her from her PJs into their hospital gowns, and then they gave her the first part of her anaesthesia, I got to hold her this whole time and watch her fall deep into sleep, and then be taken out of my arms and walked down the hall where for the next 3 hours I had no idea what was going to happen. I cried for those hours not putting down her PJs she had been wearing- we had a nurse telling us what was going on in the OR, when major things happened, such as first cut, when she was put onto the bypass machine, when she was taken off, and when she was being stitched up. When I saw the nurse walking down the hall my stomach was in knots, it was really unbearable, sometimes it was to tell us what was happening, and other times it was to tell other families, either way it was so hard to watch her walk towards us not knowing what was going to be said. When they told us she was out of surgery and did great I cried some more but they were happy tears. I would never be able to tell any mother going through this that it was going to be okay because it wasn't. I will remember ever moment of this day, and I will wish and pray that will never have to happen again.

She was moved in the CICU and her first nurse was amazing, he didn't leave her side for a moment. After being out of surgery for a few long hours, she was taken off the breathing tube, and she was able to breath on her own. That night was the worst, Aubrey was not comfortable what so ever, she was tossing and turning and crying, she was inconsolable, of course I was thinking something was wrong, but it was simple just discomfort on her part. Tuesday mid afternoon we were moved into 810 on 8 east, but before we moved we had many people come in a visit Aubrey, just so they could see this little girl who was doing amazing after having open heart surgery. Our nurses on 8 east were amazing, Moura was our nurse during the day, she was just fabulous, so calm and understanding. Moura had told us that Aubrey should be the poster child for children going through cardiac surgery. Dr. Emani was her surgeon and he came in and checked up on her everyday, he was amazing, and I will never be able to put into words what he did for us and just how thankful we are for him.Tuesday night she had only had 1 IV left in her, and that was for medications that she needed to have for the duration of our stay. Wednesday went the same, she was doing amazing, able to take her medication, able to eat, laughing, sitting up, and just being herself. Thursday came around and she was little sore and cried for about an hour until the medicine kicked in and she was able to be comfortable again, and they took her out, checked her vital signs, drew some blood, and we were discharged.

Now before I get into us being home, I do need to say I met some AMAZING mothers, and fathers, but of course me being a mother I was able to connect with the moms easier. I met a women from Kentucky down in Boston with her 8 month old son who needed multiple surgeries, and had already had multiple surgeries, a met a another mother whose 5 year old daughter was one her 3rd heart surgery, her daughter had down syndrome and autism, 3 heart surgeries, I don't know how she did it, and another mother whose 4 month old son was getting open heart surgery. All three of these amazing moms were so strong for these children, and it made me feel as if I was not alone. Walking through Children's hospital you see many different things, kids with cancer, children that will never be able to walk, children just simple there for a broken arm, but we often take these hospitals for granted because we live so close, but just in Children's you meet people from all over the country. It also makes you feel blessed for what you have, and puts life into prospective, that life is to short, and you can't live with regrets, or question why, it makes you realize that their are bigger things in life, and the small things shouldn't matter.

Going home was a great feeling, we were greeted with balloons, and a welcome home sign, and family and friends. It almost felt surreal, to be home and back to everyday life. It almost felt like a dream, I felt like I still had to get ready for her to have surgery, but I didn't it was over with. A week ago today she was in surgery, and you would never know it. She is able to do almost everything she was doing before the surgery, besides laying on her belly, which is obvious. There isn't a greater feeling then to know that this is in the past and that chapter is closed and it's time to start a new one- and we all made it through, and took with us a life full of gratitude for the staff at Children's, and a piece of mind that we are that much stronger then we ever imagined.

days go by..

The days are going by one by one, so fast yet so slow. I try to forget but it wont leave my head, I obsess over things I shouldn't be dwelling on, because for that hour or so I'm dwelling on something else, I am not consumed with the fact that in 2 weeks I will be handing my beautiful daughter/best friend to a bunch of doctor- who might I add are human and can also make mistakes, to fix her heart, to do medical procedures that will help shape the rest of her life. I have watched Boston Med, call me crazy but its just something I had to do, not to mention I have DVR ed all of them and watch them over and over again, I need to know, I need to have total control I want to know exactly what is going to go on behind the doors.

There is one part that I keep imagining over and over and over, and its the part I need to say " see you good luck I will be here when they are done with you" and kiss her for luck, and watch them walk away with her, how can I do that? I don't want to give her to them knowing what they need to do, knowing that she could be in pain, and I will never know because I am on the other side of the doors. I have always tried to be this strong person that would not let anything break me, but this has done it, I am broken, if I could I would go through the surgery for her.

Aubrey is so happy, and constantly smiling, she has progressed so much over the past couple weeks, she claps, and does the sing for "more" she can almost sit by herself :) she is so full of life, and when I am around her I can't be anything but happy, but at the same time so sad because I know whats coming, she is living as if nothing is wrong with her heart, shes not worried, or scared. I am thankful she doesn't know and I can do all the worrying for her, because I have felt helpless for so long. I sat down and had a conversation with Tagen explaining that we were going to have to go to a place to get Aubrey's heart fixed so it works like his, and she will have a booboo but it will get better, but mommy and daddy wont be around for a couple days but he can come and visit, and while we have to stay at this one place with Aubrey he gets to stay at many places and have fun all day long, of course he didn't understand he responded to me with " who will watch us if you and daddy are going away" and " if she has a booboo and need band aids she's not going to use mine is she?" He's so cute, and Innocent and he has no idea what is about to occur in his little sisters life. Which is better for him, because he doesn't need to be scared about what is going to happen. I guess it is just hard, I never thought I would have to deal with all this, and I guess I am just going through a lot, I have good days and bad days, nightmares and nights where all I can is cry. I try to make a plan but I know I wont be able to go through with it. I guess these next 2 weeks before the surgery and probably the 2 weeks after I am going to learn a lot about myself, as a person, a mother, an advocate, a wife, a friend, a daughter, and a sister.