Posted (Tina) in All Posts on December-17-2007

I took the day off from work so I could hang out with the Bun.

Her stats look good. When she is asleep, her heart rate is around 150, saturations pegged at 100, and breaths per minute around 60. When she is awake, her heart rate is around 175, saturations pegged at 100 and breaths per minute at 70-80. And of course, who can miss those big blue eyes?

This is the fourth day in a row that I spent with her, and the only thing I have noted is that she is a sleepy Bun. It just seems like she is sleeping a lot these past several days.

The good news is that it does not seem like her breathing is overly labored. Don’t get me wrong – – she is working very hard! But, my theory is that her body is working just hard enough with each breath, that it wears her out quickly. Over time, I think she will get stronger and build endurance. But for now, she will be awake for a bit and then has to take a nap or go to sleep for the night. Last night, she went to bed at 8pm and woke up at 6am and yet, she still took solid naps today when I was with her. Tonight, she went to sleep at 7pm. I guess all the visiting is wearing her out too!

Her feeding schedule changed slightly. As of this morning, they are venting for 10 minutes, feeding over 30 minutes (decreased from 1 hour) and venting for 30 minutes afterwards. Again, the goal is to work up to a bolus feed schedule where she would eat over 5-10 minutes and vent for 5-10 minutes since this is what we would do at home (they are still feeding her 64ccs of Portagen every 3 hours).

As of the end of last week, they weaned the Diamox medicine that she has been taking. The Diamox requires the central line; it cannot be given orally or via the feeding tube. So, they are hoping to wean that over the next couple of weeks, so that her central line can be removed. This is a potential source for infection, so we hope that she can avoid that scenario. Plus, we would love to be able to give her regular baths again! If you remember, she loves them!

Another NICU family that lives in Gainesville gave us comp tickets to a theater production called “Tuna Christmas” (the Mom works locally at the Hippodome Theater). It was really funny and a great escape this evening from the normal routine of the hospital. It was so nice for them to think of us during this holiday season.

Walking around downtown Gainesville in the crisp air after the show was a clear reminder of the holiday season (yes, it can get cold here – – it was 45 degrees tonight). The smell of fireplaces in the air and the holiday lights on all the buildings gave the distinct Christmas feel.

We never thought we would still be here for the holidays; we never would have imagined this journey. But we are so thankful for Ella…she means so much and is such a wonderful gift from above.

Proverbs 19:21
Many are the plans in a man’s heart,
but it is the LORD’s purpose that prevails.

Eusey Family on December 17th, 2007 at 10:07 pm #

She sure looks good. Glad you got to take some time and spend some special time with Ella today. I know you guys are moving — are you really expecting summer? Is this new news that the docs are recommending she stay until then? I may have missed the post. Sending many prayers and hugs.

Shannon, Rick, Megan, Richard, Claire and Ryan.

Megan Eusey on December 17th, 2007 at 10:13 pm #

I MISS YOU ALL SO MUCH!!!!!!!!!!!! 🙂


Gloria & Red Jacobsen on December 17th, 2007 at 10:50 pm #

Wow! The Bun is looking good so bright eyed and looking at everything around her. Lots of prayers you can take her home soon!

Lisa T on December 17th, 2007 at 11:23 pm #

Hooray, Ella! You continue to have cheerleaders in CA, and you might just be more popular online than Brangelina. You look great!!

Lizotte Family on December 18th, 2007 at 7:04 am #

Sleepy Ella! Tell your mommy not to worry about the beauty sleep all babies should sleep tons of hours… up to 20 hours a day is just fine. You only need to wake tup to eat, and change a diaper and now get a warm bath. The rest is rest.

The Brittain Family on December 18th, 2007 at 7:23 am #

Go, Ella, go! You’re doing it, baby girl! Know it must be really hard work doing all that breathing on your own with no breaks, but your little lungs are coming through. Keep getting the rest you need and sharing all that cuteness! It’s great that you’re going on a week for being off of CPAP–keep breaking those records! We keep praying for your strength and praise God for the way He’s led Daddy and Mommy in every decision, step by step. Rest in His goodness today! We praise God for your sweet little self and are glad you are a part of our lives through prayer.

Joan and Steve Odell on December 18th, 2007 at 8:24 am #

She look so very good – My heart aches for Jasmine and Chris -prayers continue for them. Hard to believe that Christmas is almost here – sure you were hoping to be home. However, this is another step in your journey and you might never have experienced and enjoyed Gainesville. We are so very grateful for Ella’s progress and thankful that you have shared your journey with us. Lord Bless and many hugs – Steve and Joan

Williamsburg on December 18th, 2007 at 8:38 am #

Well, 45° is respectable. Glad you’re getting some Christmas feel amidst the palm trees; guess we’ll cancel the overnight shipment of ice-packed snow we were going to send to make sure you got in the spirit =). Maybe some cookies instead…
Tina, what a blessing that you’ve been able to take this time to just hang out with Ella and spend the time together that you both need. Sounds like her little body is doing a good job of regulating the rest it needs to do the hard work of getting stronger. WE are just so thankful for the incredible progress she’s made over the last few months, slow as it has seemed at times, and for all the amazing milestones she’s achieved. Hang a little bunch of mistletoe over those adorable plump cheeks and smooch her thoroughly for us. Much as we miss you, we’re so grateful to know that God is truly Immanuel – with and for you every step of the way. Much love and many hugs. XOXOXO

Joel Snyder on December 18th, 2007 at 9:03 am #

Ella, I love those beautiful big blue eyes. Keep up the good work and baby steps on the breathing and feeding. I am so glad that you and your Mom are progressing togeather. Taco and Manny say hello and can’t wait till you come home. I will check on you later. Love, Grandpa!!!!!!!!!!!!!

Pat & Bob Hadden on December 18th, 2007 at 10:08 am #

wow. Ella is a pretty sight. She’s probably like my big bear of a little brother…when he’s sick, he sleeps. His body just takes all the energy to heal. Hopefully Ella’s just on full-tilt heal cycle while she’s dreaming. Sending good thoughts and much love your way, Pat & Bob

Kara on December 18th, 2007 at 2:28 pm #

Any chance she is sleeping a lot because she is growing also? If she was healthy it would be about that time. One can only hope. Goooooo growth spurt.

Jan Mark Caila on December 18th, 2007 at 10:27 pm #

Hi guys, what is your mailing address, I can’t seem to locate that or your e-mail address, she looks absolutely beautiful, keep up all the progress, we miss you, warmest thoughts and prayers, I once heard a saying, “Live in Peace and Peace will live in You”, Loves and Hugs…

Jim and Char Jordan on December 18th, 2007 at 10:46 pm #

Hi, the computer had a visit to the repair shop. Of course nothing was found. It seems just like my car. When something happens to the machine it will only duplicate the problem for me. Anyway, I was glad to have the opportunity to catch up with the West Family. Everything sounds good. LOL Jim and Char

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