Monday - Tuesday

Dec 3rd & 4th

Captain of the Storm

I have a little notebook that has become infamous. I take my 'medical notes' in it everyday. Six weeks ago when we would go for rounds on the PICU floor, I would have it, my pen and a cup of coffee (and I remember looking down at my post-pregnant belly...crazy). Anyways, I refer to that book for my posts and when I checked for the 2nd and 3rd...it was empty. But I did take notes for the 4th! So here it goes from memory.

I think we've been feeling a little in limbo while we wait for the circuit change. On Saturday I got a call from the nephrologist (dialysis doctor) that she wanted to wait for the change until the filter on the machine just clotted on its own. There is a plan to cap off Noa's catheters and then assemble the right team to do the change so as to be as prepared as possible for any 'hiccups'. All the right people and equipment on hand. As of tonight it is still running. It is on day 9. The protocol is to change it every 3 days. So, tomorrow at 12, there is a planned change of the circuit. 

I was a little discouraged when I went to see Noa on Sunday. It seemed, in the short time I was there, her heart rate kept dropping and then she would act uncomfortable (throw up her little fists and flex her feet). The nurse would suction out her ET (breathing tube) and her numbers would go back up...but it seemed to happen more than normal. When I called in the evening they had to give her platelets (blood) which helps increase her inner vascular pressure and thus increases her blood pressure. When that didn't help, they put her back on dopamine to help her out.

So when I went to see her this morning (Tues), I was sad to see she didn't look as good; her catheter sight was bleeding. (they think it's because of being positioned for the morning X-ray), her feet were swollen and chilly and I learned that she was back on dopamine because her heart rate had continues to stay low through the night. 

They told me that our doctor had unexpectedly been called away for a family need, so we would have the same doctor that saw Noa on 2 days during the Thanksgiving holiday. When he came in, I learned that over night they started Noa on antibiotics. He felt that there were enough indicators that pointed towards an infection (and to play it safe with all of her wounds/IVS). Not only had her blood pressure been low, but her gases were not good, her blood sugar was up, the X-ray of her lungs looked like they were 'wetter' from the previous pictures and she wasn't 'behaving' like herself. So- she is on 2 antibiotics to help fight anything she might have. They took a blood culture around 4pm on Tuesday and should have results back around the same time on Friday (although they have a preliminary finding report after 24 hrs). So we will wait and see. He thought a slight possibility of pneumonia...but doesn't know.

Obviously I was discouraged. We want to see her improving, and when there are any challenges that hit her, Justin and I both get concerned that she's going to run out of 'oomf' and is getting tired. I get worried that the doctors will interpret any bumps as a road sign that points down the path of 'not responding despite intensive care' and will start to say what I don't want to hear, "...she's not trending in the right direction..."

We probably struggle with feeling tired and wonder how she feels. I think I became more concerned about a timeline after our last Care Conference. I don't think any of the doctors were suggesting that we put an end to Noa's care, but I definitely heard more talk about considering it in light of the multi-layered care she's receiving. And particularly if her kidneys don't wake up. It's been a pretty torturous process wondering if we're pushing her or if the fight is still in her. Its hard to tell sometimes without any experience seeing a baby go through this. Honestly, its heart breaking to see her and wonder if she's suffering. But, the nurses assure us they don't feel like she is, although she is definitely uncomfortable. I have been encouraged by the nurses more than once that they aren't seeing the signs of a baby that is declining or giving up. And they often suggest that she's strong and feisty and has the will to live.

Last night I re-read a story to Ruby out of the "Jesus Storybook Bible" that I read over and over to her when I was pregnant with Noa. Its called 'The Captain of the Storm'. 

Its the story in the gospels when Jesus climbs in a boat with his buddies (the disciples) after a long day of loving and caring for others (ministry). He falls asleep while they are crossing this lake and in the meantime a HUGE storm erupts and freaks out these men that are experienced boatmen/fishermen. Jesus sleeps. Finally they wake him up and yell, "We're going to drown!" So Jesus commands the wind and waves to stop and they do. Then he says to his friends/disciples, "Where is your faith?" And they were in awe that he had command of even nature. 

I couldn't get the words out when I was reading it. Ruby gave me kisses and hugs because I was crying...only the surface of the sea of sadness in me. And honestly, that is me, saying to Jesus...Wake up!!!!! The storm is too big, its going to take me over. 
I know he CAN heal Noa- he's God! But I don't know if he's going to and I confess, I am afraid. Thank you for praying for us and our faith. We love reading the comments and look forward to it. I love seeing your faith-we are blessed by you.