Sweet Dreams

Good night everyone! 

Team Tehilla

We are just waiting for our discharge papers. But I have to write this:

Thank you to our families that helped in all the behind the scenes child care, food,  and stability. Thank you to our friends for the meals.

Thank you to every single one of you. You are all a part of Team Tehilla. Your prayers were the true force behind Tehilla's recovery. Your blog and Facebook comments gave me and Ron so much encouragement. We all played a part in this insane and risky journey. From the bottom of my family's 4.5 hearts, thank you and so much love. 

HOME!!!!

"Echo looks great, now get out of here."

Echo was great! I even got to see the BT shunt. We are just doing an X-ray and then Ifat will take out her stitches.

Then we go home! No more screaming kids or middle of the freaking night wake ups!!!! 

We come back for an echo and check up in a week. 

Home! I will be breaking out in song and dance. 

Inconceivable!

Dr. Golander came to check her. I figured I had nothing to lose, so I went for it. I told him that the only reason we are still having trouble is because my milk is low and she is adamant about nursing. 

He said that it is a usual fall out after heart surgery that there is some regression in eating. He asked if we wanted to be moved to a room. I said, well, actually hospitals aren't conducive to sleep. Everything will go back to normal if they let us go home. Then I held my breathe. 

"I think it's conceivable that you should go home. Let me talk to Dr. Erez."

Dr. Erez and Dr. Golander came in a half hour later. They looked over her charts and asked me if I felt comfortable taking her home. "Extremely". I repeated everything again and they nodded their heads. 

"Alright. We'll do an echo and if everything is good, you can go home after we take out some stitches."

Now is where I curtsy. 

We are doing the echo now. Hold your breathe. 

Ugh

Last night was a nightmare. Tehilla is refusing to eat anything but nurse. She clamps her mouth shut and spits out any formula I manage to get in. I even tried with a syringe. She's a smart little cookie. 

My milk is low. She is not getting enough to eat, so she is going down in weight and is irritable. She is barely peeing because she doesn't have what to give. She is not dehydrated. She won't sleep because the poor little girl is starving.

Last night it took me 3.5 hours of her screaming to get her to sleep. I broke the rules and nursed her every two hours last night. I walked up and down the halls with her in my arms or her in the stroller. I even put sugar water on the nipple of the bottle. She adamantly refused. She finally fell asleep at 2:15am. I fell asleep too. 

We have had really great nurses until now. At 4:00am, a different nurse came to check her diaper and take her vitals. She did not like that our nurse hadn't done it yet, because I had been struggling to get her to sleep and now we were finally sleeping. She wanted him to have done it already, even though he told her we had a horrible night. So I wake up at 4:00am to her lowering the crib. 

"What are you doing? You will wake her."

"Her blood pressure needs to be measured and I want to check her diaper."

"No. Don't touch her. I spent hours getting her to sleep. You absolutely cannot wake her."

"But I need to check-"

"Nothing will have changed in an hour or two. Go out now and let us sleep."

"No, I-"

"No, you don't. In an hour. Bye."

This morning Tehilla was finally hungry enough to eat 70cc of a bottle. I bathed and weighed her. She went down 10g. She weighs 6.165kg. That's really not that bad. 

Here's the thing, my milk can't build up without sleep and if I'm stressed. But I can't get any sleep in the hospital. And it's stressful. I'll be talking to Dr. Erez about that when he gets here.

Now, I'm going to nap.  

Plotting Escape

Have you ever tried to take a nap, in the midst of a 4 year old's birthday party? Or maybe tried to recover from the flu while on a roller coaster? 

Oh, shame. Then you really can't relate to the 4th floor. It is trying to keep a baby calm post op, with 7 other babies or kids. And their parents. And their uncle's sister's dog's monkey's grandfather.

Okay, so the absolute only advantage to the 4th floor, is that you are allowed to go for walks and leave the ward. So, thank G-d, for that, I have been sneaking away and using the PICU facilities. I also go for walks with Tehilla in the stroller, to different little quiet areas of the building to get her calm. Seriously, our nurse just shouted over a party of 12, visiting a little boy, "Why can't you get her to relax?"

Last step until home...last step until home...last step until home. 

4th Floor

In Tehilla's last ditch effort to stay in PICU, she got a rash on her head, back and stomach. Either it's an allergic reaction or viral.

The only "new" thing she has eaten was Gerber baby food. I make her baby food fresh at home. There are preservatives in it, so it could be to that. 

But her stalling didn't work and we have been transferred. This ward is just as difficult as I remember it. It truly encompasses the name "step down". 

It's a giant room with 8 beds separated by curtains. As soon as we got here, we were placed in the space directly ahead. I noticed that the corner spot that is around the corner, near the window and has two walls, was unoccupied. I immediately asked to be moved there. As ridiculous as it seems, it provides a lot more privacy and even a slight removal from all the noise. I may have become an advocacy-addict. I acknowledge my problem. 

So we're here, and trying to be positive, we are making excellent progress to the end result: home.