Today we had our meeting with Cardiology and GI. Although many of the sad realities of Hope's condition and chances of survival have been explained to us before, it is always difficult to hear. I'm not sure if my brain just filters the negative information and stops me from accepting it all at once, or if I just refuse to accept reality.
Hope's liver problems are serious, they are more likely to cause us to lose her than her heart that is only half there. This is so frustrating and we continue to hope that she will be able to have surgery on her liver in order to give her some chance at a future. We may not find out if this is possible for some time now, all the more time for everyone to pray.
Apparently things are changing once again, the heart cath is back on the table and is likely going to happen in the next two weeks. We'll figure out if I'll go up alone or not based on which day they schedule it for. This is not the safest procedure for Hope and we truly hope they find something that will help Hope and we aren't doing this for no reason.
Hope is not on infant formula any longer. Nothing is working and they have come up with a new plan for Hope that appears to be working. It's only been 12 hours so I won't hold my breath just yet. Hope is now on toddler food. It is essentially the foods you would feed to a toddler, all mashed up and turned into liquid. They wonder if giving Hope real food instead of manufactured fake food will sit better in her tummy. Please pray that this is the answer we've been waiting for.
We were told today that if Hope can get off TPN (liquid nutrients), that they would let us go home with a PICC line and an NJ tube. Both things you usually have to get rid of before leaving the hospital. They feel sorry for us now and are willing to be flexible if we can get Hope on full feeds. Please pray for this miracle to happen!
As for Miss Sadie, she is a trooper. It's not easy to carry her and her heavy cast around. She can't wrap her leg around my hips to help and my back is already sore. She did fairly well today but has had a rough night. She's been up numerous times crying and complaining about the pain in her leg. It's getting close to midnight and Sadie is in the bathroom with Shawn brushing her teeth. She's usually an amazing sleeper, this is not like her at all. It looks like we might have to bring her in bed with us tonight. Something we are not into and avoid like the plague.
I miss Hope tonight. After spending the morning with Sadie, being in that meeting for a large part of my time at the hospital and spending the evening at home, I miss my girl. I managed to run into the mall quickly while Oma sat with Hope. I had to buy pants for Sadie that will fit over her cast. I grabbed 3 things and pray they work, I don't have the time to look around and it's too cold to leave her bottomless!
Life is tough and often down right sucks. In the midst of that, I am always reminded that we have so much to be thankful for. Last night as I pulled into the hospital parking lot with Sadie to have her leg X-rayed, a helicopter was landing. When we got inside the ER I watched as a seriously injured teen was wheeled past me. My daughter broke her leg and it's very inconvenient and frustrating. On the other hand, she is going to heal quickly and should be just fine. The teen that I saw last night is not going to heal quickly and be just fine, their family has a long road ahead of them. It's not different with Hope either. We have the odds stacked against us and smart doctors telling us that our chances are low. Other families have already lost their children or are battling even more complications. I am still blessed, just tired.
It is only by the power of God that I can still say, 'It is well with my soul'.