Surgery #2

The thing with surgery is you do it to get to a better place. But getting to that place puts you in such anxiety at times it seems as though you may not being making the right decision even though all the signs point in that direction. But as a mom to watch your daughter get wheeled into an Operating room is a gut wrenching feeling I can’t even begin to explain besides just wanting to save her or take her place.

Last Monday marked the fourth time that we were told to be ready to say goodbye to her. Now each time gets harder since every time we have had more time to fall more in love with her. As the week went on we had a few bumps, like a popped lung, but once they put in the chest tube to drain the air she began a steady climb up hill and day by day got so much better. Now I have found out she does not like gas or pooping because she de-satted on Thursday when she was passing gas and filling her diaper and the moment she was done she just went limp and fell asleep.

She is my little ‘stink’ when it comes to keeping me on my toes and making sure I don’t at any moment think I have any control on what happens with her. God has definitely used her as a training tool to me for patience and trusting in him. Because the moment I start to try to regain control is when he shows me otherwise.

The weekend went well and got visits from family which I love and every day she is more awake. Monday she started being able to find her vent tube and pulling on it so we had to put mitts on her. She is also trying to talk and smile, but with all the tape and tubes we can’t hear her or see her full smile. Just to hear her voice is going to make me cry.

Monday oh Monday!! We went to see her and during rounds they informed us that her vent settings were so low that we could take her vent tube out, but with her going into surgery maybe this week they wanted to keep it in. Can you even imagine it!! She is at the point where she is breathing! To think that a month from today they were telling me I most likely will be having a baby that will not survive past delivery. But now in front of me is a sweet baby girl who knows my voice, smiles, grabs at things, and is breathing. She has amazed so many people and doctors of what her little fragile body can do and handle. And along with that the amount of lives she has touched in her short time on this earth. She is my superstar.

Later that day on Monday the doctor came in while she was having the fits about her tube and told us he would track down Heally (or surgeon) to see when we would get her in for the next surgery. Well as anything goes here we just have to sit and wait and hope to hear something. So we waited most of the day and the surgeon finally came in and told us he was comfortable taking her into surgery now that she was so stable and would check his schedule and get back to us, which wouldn’t be till the next day. So of course that drives me nuts not knowing but also made me feel better that he finally showed up and was confident in taking her into the OR. This surgery would entail the removal of her left kidney, the placement of the peritoneal catheter for dialysis, and a G tube placed in case we needed it for food supplements of medicine.

My plan was to go down and surprise the kids at school on Tuesday and bring Savanna to dance class so I could spend some time with them. There were many reasons I wanted to but mostly because on Sunday I had a complete meltdown. Being away from home has been so hard for me because I find comfort in being around my own surroundings, my family, my home, my kids, and my animals. So this whole month has had so many hard parts to it and of course being away from my home life has been REALLY hard and really hard is an understatement. Dan was amazing though in trying to comfort me and calm me down, which took a good 2 hours. It hits me in floods when it hits me because it is the constant toughing through it that really just gets to me at times. For the most part I stay pretty grounded and strong, for Faith and for my kids but being human I do break, and this was one of the worst breakdowns I’ve had. It’s hard not feel like your failing as a mom, but then I know I’m doing the best I can in this situation God has put me in.

So Tuesday came and at about 4 am we got a call. Now any call still leaves me panicking to find the phone and of course a call this early left me completely panicked BUT it was a good, amazing call. The power had went off so they had to switch her circuit, so they wanted to know if we wanted to come hold her while they got the new one? Really I don’t know why they even ask me that but I’m sure there may be some parents that aren’t able to, but me I couldn’t move quick enough.

When we got there I had to pump so Dan held her first and then it was my turn. She wasn’t swaddled this time so I got to feel her bare skin against me. I sat there and just stared at her and watched the sunrise with her in my arms. God must have known how much I needed to hold her since I was such a mess knowing I was leaving her for the day. As I gave her back though the tears flooded my eyes having to put her back in the bed, but it also made having to leave a lot easier. It is feeling what you are missing that makes it harder to be ok with.

I then drove my two hour drive to go and surprise the kids at school, and surprised they were! Tristan was in tears and Savanna was the happiest and most shocked I’ve ever seen her. We spent the day together all the while the gut wrenching feeling of being away from Faith was killing me. I have never in my life been so torn. People are free to offer advice on how they would or how I should deal with this situation but until you really go through something like this you can’t really understand. Leaving her isn’t what is at all comfortable to me since she is so unstable and at any moment could be gone and home is just not around the corner. So to drive that far for that long put such an anxiety in me that I am not going to be able to do again in the near future. So when it was time to say goodbye to head up was just as hard. I wanted to stay and be with them but also needed to be with Faith. So the being torn is exactly how I am and feel. I cried the majority of the way back to the hospital but also was excited to see my baby again. A feeling as I said you can’t explain unless you have been in this position.

The kids of course wanted to come up with me but knowing surgery would be on Wednesday I knew that it wasn’t a good idea for them to be there so I would have to wait till the weekend to go get them. Wednesday was here and it included a day of waiting and being on the edge of our seats waiting for the surgical team to show up to come get her. Dans' Grandpa came up to visit and then his sister and Aunt Twila came to stay the remainder of the day. Later that afternoon my mom and dad and Gus showed up to stay till surgery was over too. As always waiting for me sucks and gets me so on edge it was a good thing the kids were not here. The afternoon came and went and then dinner came and went and then at 8 pm the door opened and anesthesiology was entering the room. All day I held it together and was nervous but having them come in it hit me all at once and took so many deep breaths trying not to break down or puke. They went through all the check lists of lines and then had to tell me all the risks of what could happen, which I could have lived without. Then it was time. We followed behind her as they wheeled her down to the operating room bagging her. They then stopped to let us say goodbye and I kissed her and prayed a quick prayer and watched her disappear behind the doors and my heart broke. Dan just kept saying she would be ok, but even if she was ok the thought of her having to go through all that pain without me there hurt so bad.

We waited an hour before we got the call that they had started the surgery and then about 40 minutes the kidney was out! Well then we waited and waited for 2 hours with no call and out of the corner of my eye I saw her bed coming around the corner wheeling her back to her room. At first I was relieved but then upset that we had not received one call that they were done or he was ok in over 2 hours. The surgeon then came to tell us it all went good and she handled everything well and once she was settled we could go see her. Everyone took a deep breath but me. Until I could see her there was a part of me that was not going to be able to take that breathe. Then it was time. We then saw her, with all the tubes coming out of her now that made my heart break. For some reason I had a different picture in my head of what they would look like. The G tube to me almost looked barbaric and not at all what you would expect and then the dialysis catheter was way bigger than I thought it would be.

The next day Dan went to go see the kids and to Jordan’s game and I stayed to be with her. It was pretty uneventful but the pain was so prevalent on her face whenever she began to wake up it broke my heart. My cousin Lu came up to see me and we talked for a while and then my little angel woke. She was so wide eyed and happy I began to finally feel the sense of calm come over me. Of course they had to mess with her and suction her which hurt her and made her cry but then she calmed down. I kissed her forehead and she drifted to sleep.

As Lu and I talked the one thing that is so true, even at times I may not believe, is God only gives you what you can handle. Now if I was given the choice to go through this I would NEVER choose to, or even think I could live through. But I have and became such a different person because of it. Now do I know what the reason I am or will I ever, who knows, but that is not my right to ever know if ever do. The one thing I know is God gave me an angel to care for. She may not have wings but she nothing short of one in my eyes and in so many lives she has touched. There are not many people who could endure what she has been through in her month on this earth so for that I know she is an angel, and that is all that matters.

Happy one month birthday baby girl!!!