Fat Thoughts

Tehilla has been eating mostly pretty well. At most of her meals she eats between 40-50cc. Her eating is no longer a problem.

The problem we face is that she keeps losing weight. It is a normal response of the body after surgery. But until they see that her body has recouped completely and she is starting to go up in weight, we can't go home. At birth, she weighed 2.790 kg. Today, our little warrior weighed in at 2.615 kg.  The nutritionists are hard at work trying to fatten her up. 

So, please, think fat thoughts! 

Rockin' the Scar

Tehilla had her feeding tube removed! She ate 47cc at her last meal! I had stopped using the feeding tube after an incident with a nurse yesterday. I had also realized that the feeding tube would be on a drip for an hour, so by the time it was her next feeding she wasn't hungry enough. She has been moved up to 60cc a feeding and what she doesn't eat I drip into her mouth slowly with a syringe. 

Tehilla has gone down in weight, so they will be adding to her Monogan formula something with glucose to raise her calories. 

Tehilla just had her stitches removed. You can see the top of her heart warrior scar in the picture.

They have mentioned that we will probably be discharged from the hospital on Thursday!

Pretty Please

Moving to this ward was an adjustment. After a bad mishap with an inadequate nurse, I found one of the cardiologists on our team.

The only reason we are still here is because of her eating. He gave us our goal. When she is eating 50-60cc on her own without the feeding tube, then we will go home. 

Well, Tehilla heard the pleas of her mother and ate 45cc at the next feeding. The feeding after that she ate 38cc. G-d bless her.

After that, one of the pediatricians from our team came to check on her. I told him about her eating and he said, "Get her to 50cc, and you're on your way." He stayed to answer a bunch of my questions about Tehilla's care at home. 

Transferred

We were just transferred. Yes, it felt fast for me too. It feels like we just went from first class to the luggage compartment. Before Tehilla had her own room with a nurse that we sometimes shared with another room and a full staff of doctors constantly attending to her and up to 7 other patients. I had my own little room outside of the PICU with a bed, closet and night table. 

We are now in a great big communal room with 7 other patients and 2 nurses separated only by curtains. I have a pull out chair/bed, next to her.  There is no privacy and there is constant noise. We have been reunited with a "sunshine" of a child that we had the "pleasure" of meeting in the PICU. This boy spits out his medicine, pulls out his IVs and screams from dawn until dusk. Before there was a door. 

I'm going to click my heels together and remind myself it's only supposed to be for no more than a week...

And then home. 

Morning of Promise

A few of the doctors came around just now. They are planning on taking Tehilla's chest tube out today. The plan is to keep her on formula for several weeks more, to make sure the fluid doesn't come back. 

They are also talking about transferring us. Except for the two days before Tehilla's Norwood surgery, when she was in the NICU, we have been in the PICU this entire time. They would transfer us to the post-op children's ward. It is part of the step-down process. The point of sending us there is that Tehilla would still be under medical attention, but far less. I would be the primary caregiver, as opposed to in the PICU, where the nurses are the primary caregivers and I just assist. The purpose of it, is more to prepare me for going home than with anything else. It's expected, barring any complications that we would be there less than a week. 

Dr. Erez is the one who would have to sign off on us being transferred, so we'll see what he has to say. 

Nice Shabbat

Tehilla and I had a nice Shabbat, joined last minute by my brother. 

Tehilla has been eating nicely today. At her feedings, she ate 25cc, 20cc and 27cc from a 50cc bottle. She's made a lot of progress. Today we noticed a bad cut on her tongue, probably from when she was intubated. They are putting ointment on it. 

The doctors told me they plan on taking out her chest tube tomorrow morning! G-d willing, it will be a good start to hopefully a great week.

Eating Well

The fluid has almost completely stopped from Tehilla's chest, and they are discussing removing her chest tube.

She is now getting 50cc of formula and this morning she ate 20cc by mouth! Thank G-d, she is making very good progress with her feedings. 

She occasionally has a problem where her oxygen saturation dips down very low and they have to put an oxygen tube near her. 

Here she is with Ron.