Thursday, September 06, 2012

Excellent Day

Her ICU room

She loves daddy!

With her lovable doll. The NICU nurses gave it to her when she was just about 3 weeks old. All the parents there get one to place under their shirt so it "grabs their scent". The baby then has their parents scent to comfort them in the hospital when the parents can't be present. 

Bonding time

Milk again!!! yea!

Peek-a-boo!

I like how she fell asleep with her arms like this.

Her new ICU room had much more light, and a much better view.

oh, too much sun!

"Huh? What?"

"Does this towel make me look fat?"

Trying to pull out her tube

Such a long day!

I will wait to smile until you put away the camara.

She smiled so much today and this was the only good shot out of about 100 pictures we took today

oh, hiding the smile behind the paci

She managed to pull out her feeding tube the second I turned away. She looked hilarious but she kept moving so it was hard to get a better picture.

So She had a really excellent day today! No oxygen again, perfect vitals: blood pressure, heart rate, respiration rate, and oxygen level; no fevers and was very calm and happy. Didn't need any pain meds and her PICC line placement is still really good and clean.  She got started again on milk so her stomach doesn't forget how to work. She gets only 3 ccs an hour, but it's something!  We saw about 4 doctors within the first hour we were there this morning.  They couldn't do the MRI because they have to wait for the anesthesia from yesterday's procedure to completely wear off, so they plan to do it tomorrow afternoon. They will have to put her to sleep and insert a breathing tube during the 45 minute MRI. Because her belly's still too big, they don't want to only sedate her because it could cause too much pressure on her respitory system.

Her belly stayed about the same today. It had gone down to 40 cm. and tonight when I left it had gone back up to 41, but that was just because of the milk she's getting and she hadn't made a good poop yet.

She has to keep her right arm, where the PICC is, straight or the tube gets kinked. She doesn't seem to mind that too much yet.  All of the doctors and nurses were very happy with her progress. The Palliative Care director stopped by and told me that yesterday a grandpa volunteer came to visit Bela. Bela was kind of looking sleepy but once she noticed him her eyes got real wide and she just couldn't stop fixating on him. She even moved her foot to the beat of the song he sang her. The director said, "I guess I don't really need to check her out! She seems fine!"  She told me that Bela may spend up to a third of her total time in the hospital in the ICU. She said most kids like Bela end up needing a breathing tube when they're in the ICU and was very happy, almost surprised I think ,that Bela hadn't needed one. Praise God!

The GI dr. is not too concerned about her liver anymore and said she may not need a biopsy after all, but they will hopefully find out what's going on inside after reading the MRI tomorrow. She said what may be going on is that the veins got swollen(like vericose veins)  in her abdomen that link are connected between the liver and spleen.

Oh! She turned two months old today! Beto and I sang to her. Her getting milk today was considered her "cake". My aunt visited later when I was gone and also sang to her in a whisper, since she was sleeping.

All of her blood numbers continue to climb except for Platelets.

The Infectious Disease dr. came too and said her belly sounded really clear. I hadn't seen him (since the team members rotate) since she was about three weeks old in the NICU. We really like him. He's really nice. He and Beto were joking about how Bela needed a coconut with a smiley face on it to entertain her like Tom Hanks in that one movie...what was it??? We couldn't remember, so he used the computer in her room to look it up on the internet. "Castaway!" He told us if he didn't do that he knew we'd be walking around useless to do anything else because we'd just be trying to remember the name of the movie.

Bela should be able to go back to her old room in the Hem/Onc area tomorrow after she gets the breathing tube taken out. Thanks for all your prayers!
If you could, today please pray for
1. Successful and answer-giving MRI

2. She continues in the right direction

3. Her platelets go up and her abdomen shrinks
4. Her body will tolerate more milk little by little until she's eating normally again...and soon

2 comments:

  1. I am so glad she had an awesome day! She is one tough cookie like her Mommy and Daddy! I think about you all and say little prayers for Bela. I want to come by and see her as soon as my asthma clears up. (Sounds like I have a horrible cold but I don't so I don't want to freak anyone out!) Hugs and kisses to you, Beto, Santi and your sweet little angel Bela!

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  2. SUCH better news Laura and Beto! I'm loving all the pics! Bela is such a sweet looking angel!

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