So close yet so far away... Day 8

Today has been a long day. When I left Hannah at 2am she was doing great. We got to the PICU this morning and Hannah was doing everything on her own but her numbers were funky. I mentioned it to the nurse and she told me not to look at the screen and that it was normal. I told her continuously through out the day that something was not right. Note to self... a mothers intuition is always right! I do not understand why the care givers ignore this natural fact of life.

Hannah had orders to go to the floor today.

She did not make it to the floor. Her numbers were telling us she was having trouble but the nurse on hand was not paying attention. We feel the situation could have been handled better had the nurse been more attentive. This is not all on the nurse, we as parents should have gone to the charge nurse sooner. Maybe her nurse was having an off day. It happens. I just don't like it when that day is on my daughters watch.

Hannah got cold all of a sudden and it was literally about 10 minutes and we had like 12 people in our room. Her surgeon Dr. Lofin so happened to be in the PICU when she did her spell and he said she was not to leave the PICU. Dr. Allen took charge and did what was needed to be done once he was informed there was a problem. (We requested to have him take a look at Hannah). They worked fast... it was fascinating yet scary to watch them in action. She is in good hands and was where she needed to be.. If she had been on the floor it would have been much worse. Dr. Allen called later this evening from home to check on her. That says a lot to me, it shows he cares and for that I am grateful.

Her blood gases were bad. Her oxygen could not reach her tissues. She received a blood transfusion to help with that and to also help with her hemoglobin. She was put back on 3 meds to help her heart. Blood pressure, blood thinner, and one to help with profusion to her viens.

She is also back on the vent but just by mask. If she doesn't calm down and sleep they will have to use the tube so they can sedate her. She does not like the mask. She is really mad and fighting it which makes her breath really hard. You can see her chest cavity at times and her respiratory rate is high. If she does not clam down then they will not hesitate to use the tube.

What happened? I know, we thought she was doing wonderful and ready to move forward. She was not. They say they like to push the babies hard so we can get home.. so they move fast when babies are tolerating the changes. Hannah was doing great but she got tired and her heart just isn't ready to do it alone. She tried :) Her heart is fixed but as you can imagine it is still weak from open heart surgery and then having to reverse the way it once worked. The healing process will take up to 6 months.

We called the church for some help. The missionaries showed up to assist with a blessing of health. It was amazing. It offered Ricky and I some much needed reassurance and comfort. I am reminded everyday of the power of the Saviors atonement for us when I look at my sweet baby girl. It is so hard to watch my baby struggle and hurt, I can't even comprehend the pain the Savior faced and how Heavenly Father felt. What an amazing sacrifice on both parts and all because of love! Love is a powerful emotion and without it where would we be as individuals? I know I would be a lost bitter person for sure.

I am a better person because of the gospel. I can find happiness in this time of affliction because Heavenly Father gives me strength, comfort, and peace through the gift of the Holy Ghost.
I have faith that Hannah will get better soon and that her body will do what it needs to when she is ready, not when the doctors say so.

Love,
Sam