Thursday, April 7th, 2011

Emma's phosphorus levels are coming down. They'll leave her catheter in for another day or two in order to better evaluate her kidney function. A low dose of an antibiotic has been added to her medicines to prevent a urinary tract infection.

Unfortunately, the doctor says that he expects that Emma will need to be here for at least another week since she still struggles to eat by mouth. :( But who knows... she drank two bottles this evening!

It's so fun to wear clothes!!

Wednesday, April 6th 2011

Emma got to lay on her back for the very first time... for my 27th birthday! :) Her back is healing really well and she should get her stitches out on Friday. Her weight is still slowly increasing. The doctor says we can try bottle feeding again even though her breathing is still a little fast. Her chest x-rays from this morning showed that her lungs are worse - they have more fluid in them because if the hole in her heart. The Lasix medicine isn't working well enough so they are going to add another fluid-decreasing medicine to see if it will help.

It's been one of our harder days, but I appreciate all the birthday wishes and your continuing prayers and support.

What more could I want on my birthday than a wonderful husband, awesome family and friends, and snuggles from my very own daughter!!!

The doctors did a kidney ultrasound today and they are back to normal! They'll leave a catheter in for 24 hours (rather than just catheterizing her once a day) to better assess how her bladder is doing. The little stinker Miss. Emma yanked her feeding tube out of her nose 5 times today before 11:00 am and once again later in the afternoon! It's certainly NO fun getting it put back in, I wish she'd stop it. The occupational therapist checked her range of motion again today and said that in the 15 years she's been doing this, she's never seen a baby with a defect where Emma's is be able to move so much - what a miracle!

Her cheek is all red because she rips off her feeding tube so much :(

Streeeetch

Eating is HARD WORK!

Stop! In the name of love...

Emma 4/4/11 Update

Emma's lungs look better today, but her blood pressure going to her lungs is still high from the hole in her heart. They will be doing another chest x-ray on Wednesday and then she will see the cardiologist again. The kidney specialists said they weren't too worried about the high phosphorus, but that they will keep checking on her and and doing ultrasounds of her kidneys to make sure they stay looking good.

Look, a big mouth just like mine!

Whatcha' looking at?

Daddy's turn for bath night.

Let's Try Again

With Emma's breathing still high this morning, we were sure that it would be another day where we couldn't hold her and she would have to feed by tube. Fortunately the doctors and nurses decided to try and see if us holding her and letting her feed by mouth would help calm her breathing. Thankfully holding her was exactly what she needed. They also decided to increase the amount that she is fed and to fortify her milk with more calories and calcium to help her start gaining weight. Her phosphorus levels are still dropping and are almost back to normal. Emma was a lot of fun today and it was nice to feel like we were able to have such an impact in her progress.

Emma loves to sit upright. She stayed awake like this for almost half an hour. So fun!!!

One Step Forward...Three Steps Back

Today was a tough day! Emma pulled her feeding tube all the way out this morning during one of her feedings and the nurse didn't notice for a long time. The nurse told us that she was crying really hard and by the time she got the feeding tube back in and got her caught up on her food Emma was exhausted. By the time we arrived to see her, she was sleeping and the nurse said we shouldn't bother her. Luckily we were just in time to talk to her group of doctors who were making their rounds. They increased her medicine to help her breathing and heart issues in hopes that we can start feeding her by mouth again. The one good thing they talked about was that her head size is not increasing. Her phosphorus levels are coming down a little, but are still too high. Later this evening I went in to see if I could hold her for a while, but when I got there the nurse explained that her fast breathing is starting to take its toll on her oxygen levels. Her medicine should help fix that, but the higher dose hasn't kicked in yet. They have put the oxygen tubes back on her nose with just puffs of room air to see if they can increase her oxygen levels. Hopefully tomorrow will be a good day!!! It is not natural for a mother to be told that she can't hold or touch her baby.

This is how separated from her I felt today

At least she is stinkin' cute!

Who's driving this crazy bus anyway...Emma is!

Having a baby in the NICU is like being on a wild bus ride with the baby as the driver. You never know where she is going to go next and you have no control. Today some of the good turns she made were:

• She got her IV out. Hooray for no more swollen limbs and many many pokes!
• Her head diameter has not increased.
• The hole in the upper part of her heart has closed on its own.
• She graduated to a crib which means she is able to maintain her body temperature and she has less doctors monitoring her progress (fewer tests.)

Some of the bad turns were:

• She has high phosphorus levels and they don't know why. We are still unsure what that means.
• The hole in the bottom portion of her heart is still the same size and continues to cause her to breathe too fast to feed by mouth. The doctors will decide in the morning what to do next.

The Fam

She loves to be held by daddy

She loves to look at mommy and hear her sing

Big girl bed!

This was taken close to 11:00 pm and we finally decided to say goodnight. It's hard to leave that precious little face!