Thursday, November 8, day 46

Yesterday was a busy, busy day. The genetic test results have come back. Emma has an extremely rare genetic syndrome. It is definitely not the best news; however, it won’t change our immediate plan. The longer term plan has been altered a little to include frequent abdominal imaging and a dual nephrectomy(both of her kidneys will be removed). Her kidneys will have to come out, probably before 1 year. We will probably all be having blood tests to look a little further into the genetic side of things.

Miss Emma’s blood gases are finally improving but it seems we have moved on to other issues. Her BP continues to be low and she is anemic. Yesterday she required a couple of blood transfusions. Emma is on a constant drip of epinephrine to try and keep her blood pressures in a happy place. They have her on a couple of broad spectrum antibiotics and have been treating her for sepsis. It is the only thing that makes sense, and yet nothing has grown out of any of her cultures. She continues to drain fluid out of her pericardial (the drain for the sac around the heart) drain. One thing after another…

She is also extremely swollen, again. One of her eyes has swollen shut. She doesn’t even look like the same baby. It breaks my heart to see her so swollen. It has to be uncomfortable. Emma has such a sweet little spirit- you can really tell as she peers out at you with her one little eye. The PD is working well but the fluid shifts are also causing her BP to drop. Once again, it is a very delicate balance.

The neck catheter she had in place for CVVH became loose yesterday and it seemed to have quit working. As they were switching her med lines around to further troubleshoot, the entire catheter pulled out. Oops. I was standing right there and I am not sure exactly what happened! So, another access point has been lost. I think today they are going to try for another picc line in her other arm.

Early this morning the site for the neck catheter began oozing. They are waiting to see if anything grows out of the culture. The site has never appeared infected so it may have been a blessing when the catheter fell out. Or, it may be nothing.

One of the sweet families that has been in the PICU with us, had their little boy go to heaven yesterday. He has been so sick. He and Emma were born 3 days apart. His parents didn’t speak very much English but we visited back and forth about our babies as much as we could. My heart has been heavy and broken for them. Watching them go through this has hit too close to home. I know they believe their sweet boy is with Jesus and I pray that brings them peace and comfort. One thing is for sure, our babies belong to Jesus.

I can’t tell you how much of a blessing the church choir has been to me. Scripture has also played an important role but the words and the music have been huge. As each new day has brand new problems, I continually have a song running through my head. Usually, it is a song that we have learned in choir. Every couple of days, I will wake up with a new song that comes to mind. Over the last few days we have experienced more problems after more problems. I know this is just the first of many little seasons as we wait patiently for healing so we can go home.

This week “Through the Fire” has been the song stuck on repeat.

“He never promised that the cross would not get heavy,
That the hill would not be hard to climb.
He never offered a victory without fighting,
He said, help will always come in time.
Just remember when you’re standing in the valley of decision
And the adversary says give in,
Just hold on, my God will show up and He will take you through the fire again. ”

Your prayers, kind words and support mean so much to us.

Miss Madison is such a joy. I am so glad to have her close by. Full of energy, spunk and just plain cute. She runs around and opens and closes the doors saying, ” I be right back, Ok?! Don’t move!” She will also put herself in time out! Potty training continues to go well. She is working on her two year molars and maybe even a growth spurt! I think she is as well adjusted to our new normal as she can be.