Scares

So as I sat there thinking about where I would even start about what has happened in our lives since the last time I wrote, and then best way to say what it’s been like, is like going bungee jumping. At first you’re scared and so apprehensive but once your strapped in you are kind of set to fall…like I was during delivery, no turning back. Then there is the rise and fall that we have encountered way to many times in the last 2 weeks now, that fight feels like it has been months. From the start we have been scared with the fact we may lose her now 3 times. SO it starts with us finally getting comfortable with how she is doing and looking to the next step, and then we get hit with the straight down fall.

Now nothing can replace holding her for the first time. The next day I held her first thing when I got there, but when I was holding her this time her oxygen level was sitting right on the edge of ok, but last time she was 100 percent and doing so good so Dan was stressing. I could have held her all day, but he needed to eat and was too nervous to hold her, and from that point on she started to go downhill, and fast. By the time we decided to go to bed the nurse said she may go back on the other ventilator which I was so praying it didn’t happen. But sure enough at 12 am she called, and let us knows she wasn’t doing so well and her co2 levels were rising. Shortly after the call they switched her over to the ventilator, which we didn’t get a call for.

Dan as his regular self woke up at 5:30 and was going to go over to see her, but I was so exhausted that morning so I decided to stay. It was about 10 minutes later I got a page which made me jump out of my skin and I called and was told she had been switched over and they were going to be doing another blood gas, but her levels were not going down. At that point I half way hoped that they were going to be less when Dan text me, but as normal I cannot predict anything when it comes to my life with Faith. When I answered the phone he was in tears and I instantly felt my heart drop. He said in not many words that she was not doing well and he would come get me.

At that moment, the saying, ‘that the world stopped turning’, instantly became real. I sat there pumping in shock. Shock that she had been doing so well, she was on the other ventilator, she was able to be in my arms, and how could she not be ok? How? Dan opened the door and as I asked how out loud, is when it finally hit me what was happening, and I knew she was not ok without even having to see her. It is a mother’s sense I guess, but that is a feeling I would NEVER wish upon anyone. I broke down on the bed, in the shower, and walking up to see her. As I walked in her room the surgeon was FINALLY there to look at her and people were taking x-rays of her and I just felt my heart being just pulled from my chest and broke down again.

When I finally was able to see her I hurt just seeing the pain I could see her in. Her belly was so swollen and she was so pail. The surgeon ordered ultrasounds of her belly, and head, and heart, I didn’t even need to hear it out of any of their mouths, but my little baby girl was falling through my hands in front of my eyes. I walked outside to talk to my kids on the phone as my normal morning went to say hi to them, all the while trying not to let them here the heart break in my voice. I successfully got through it and informed Mel that she wasn’t doing well and don’t know if she will pull through, even though I had yet to talk to a doctor. It was within a few hours that half of our families were there.

Now throughout the last hours her white cell count had sky rocketed, her fluid volume was rising, her urine output falling, her co2 rising to 140(which should be between 40-60), her O2 was falling, and they were at the highest settings that they could go on the ventilator. So a meeting was set up for us to hear from all her doctors what was really happening, in one of those “bad news” rooms. We are very fortunate to have a family to support us like they do, but no when can make you feel any better when your baby in the midst of losing your child. All of the ultrasounds came back ok and her kidneys were just too big. So we were lead to a room with the neonatologist, the nephrologists, the nurse, and a couple other people on the staff. We sat there and heard them basically explain her condition and what the options are.

 At this point when she came to Seattle she was sick, but good enough to do surgery and in the last 24 hours she has started to get to sick for surgery, and even if they did try surgery with all the pressure from her kidneys and the machines trying to keep her alive,  a basic incision would kill her. And even if she survived, and she needed more support to get her recovered, they were no more settings to go up on. They were doing everything they could for her so if she started to fail anymore there was nothing they could. So at this point we need to have the talk about when enough is enough for her and what pain are we willing to put her through? They then left us to talk.

We sat there for a moment or should I say till the door shut and all the strength I had that was holding the tears and heartbreak in, let go and we wept. It was a long while of just heart wrenching tears and Dan asked what I thought. Part of me was in shock and how do you answer that, but then the words came out, how do you tell the doctors it’s enough and stop trying? How do you say goodbye to your baby and watch her pass away in your arms? I just couldn’t be the one to make that decision or let her go. That whole day was filled with heart ache and tears and Bev came down to be with me. I was so exhausted by the end of the day, but I also didn’t want to leave her because it could be my last night with her. Dan was more awake then me so decided to stay with her and Bev came to the apartment so I wasn’t alone.

I sat in bed for 3 hours unable to fall asleep and awoke the next morning to Dan telling me she was still alive and her settings were turned down a bit, but he needed to rest so me and Bev took the next shift and as the day went on more and more family came to be here again. This was the day that the conference with ALL the doctors and the surgeon was going to happen. I prayed and prayed all day and night not to have to make the decision on what to do with her, that he would show me or just let her go without me having to decide that. We walked back in that same room now with a few more people in tow and listened as they all explained, and at that moment I felt the peace, and I knew what needed to happen. We would do the surgery and dialysis line. Now yes she may not make it through the surgery and she may not recover, but I could not live the rest of my life with that regret that I didn’t try. I also knew that if the surgery was not the right thing she would let me know. So the surgery would happen the next day and we would go from there.

We then scheduled a baptism that all of our family was able to be in the room for. It was something I had planned on doing, but under the circumstances it was something we needed to do for her then. When everyone got in the room we started out by saying a few things then say a gospel before one by one everyone came up to bless her. It is one amazing thing to know the love and support she has been given over these days, weeks and months since we found out the devastating news, but to sit there and see everyone shed tears over her was one of the most touching things to see as a Mom of a miracle baby. We then ended by Amazing Grace and then the song that made me break, You are My Sunshine. At that moment the sun hit right over her bed and the light and love in that room was overwhelming. After they all said bye, all but my Mom Dad and two sisters, the doctor walked in. He said that he didn’t know we were baptizing her and asked if we were Christian. We of course said yes and he was so heart warmed to here the hymns being sung and asked to pray for her. To hear that from the doctor that is the one with your babies medical advice in your hands just made our decision to do what we did that much more perfect. We all held hands and he prayed the sweetest prayer for her and I was even more at peace if that was possible. He was from Wisconsin so my dad was so impressed first by his beliefs but the fact he was from his homeland made him beyond impressed and happy with who his granddaughters medical life was in the hands of.

That night we all went back to rest because I knew the next day would be a long and hard one for everyone but most of all Dan and I. Because at this point her life was in Gods hands and I absolutely no control and I passed all the control back to him. And little did we know what the outcome would be.