Posted (Tina) in All Posts on September-10-2008

Photobucket Image Hosting

You wouldn’t know it from the picture above, but poor Ella…she had another rough day.

We had a horrific blood draw this morning. It was not someone that was especially noted for giving “good sticks” and it lasted way too long, 15 minutes. That may not sound like a long time, but when Ella is fighting hard, clamping down and holding her breath while turning blue, 15 minutes feels like an eternity. We get blood draws every day, so I’ve seen those that really do a good job and those that might do well on 90% of other kids, but seriously, this is Ella. She’s tough.

Feeding did not go well. The morning feed was scheduled to take 1.5 hours, but took nearly 3 hours. She has increased discomfort along with retching. We skipped the 12 noon feed and then came up with a different strategy. We’ve talked to Dr. Perry about switching her formula to a more age-appropriate formula called Peptimen Jr. Our original plan was to slowly integrate over from the Alimentum very slowly over several weeks. Well, since Peptimen Jr. is more dense and has more calories, why not make the switch now? We are in a controlled environment and she is going to have a problem working up to full feeds either way, so why not make the food switch and maybe be able to decrease the volume of food?

We tried one feed of 60ccs over 1.5 hours and it seemed to go okay. She was not any better than the Alimentum, but also not worse. So starting tonight at 8pm, they are trying to make up some of the calories lost today and have her on a continuous feed of 40ccs for 10 hours. So far, so good. The real test will be tonight while we attempt to sleep.

If we have learned anything from Ella, she wants us to remember to go slow with change. We went through this process in Gainesville too with feeding issues. The good part: it can resolve. It just takes time. Taking a deep breath…

They increased the dosage of the Captopril today; they are still playing around with the dosages for the optimal effect. Along with the Captopril, the docs mentioned that they anticipate lowering her dosages of diuretics over the next few days. We’re excited about that…

Respiratory-wise, Ella looked fantastic. Aside from her tummy issues, which seemed to come in waves on/off, she seemed happy and was looking good. She has been stable on 1 liter for 24+ hours now.

After applying pure aloe vera gel to her face several times per day over the last few days, her nose is no longer scabbed. Yeah! For the most part, she is back to her smiley self, unless its feeding time!

Please pray that Ella will tolerate the Peptamin Jr. tonight and that she would continue to tolerate more and more feeds as the days and hours continue. Also, that her lungs and heart will work in better harmony, effectively reducing the need for diuretics and oxygen.

Deuteronomy 10:21
He alone is your God, the only one who is worthy of your praise, the one who has done these mighty miracles that you have seen with your own eyes.

Photobucket Image Hosting

Laura Arneson on September 11th, 2008 at 4:10 am #

Big Yawn, sleep well little family

Megan on September 11th, 2008 at 7:21 am #

Goodmorning everyone, I love her little braclet. I am glad that she is still heading in the right direction. Please remember that there are lots of people around here to help you including me. I hope you all have a fantastic day…=)

Jennifer Harris on September 11th, 2008 at 7:47 am #

We are praying for Ella every day. I love this baby and believe that GOD WILL step in and totally heal her little precious body. Again, thank you for sharing!
Peace & Blessings
~jennifer & chelsea

John & Estela Williams on September 11th, 2008 at 10:07 am #

Poor Ella, 15 minutes is way too long for an adult, and just WRONG for a child. I wouldn’t let them near my baby again. Poor Bun. May you have a blessed day and start feeling better. Love ya! The Williams

Kristen on September 11th, 2008 at 11:48 am #

Love the verse for today! Powerful reminder or who He is and we can rest in Him! xoxox

Adrienne (Melissa's sister) on September 11th, 2008 at 12:52 pm #

OMIGOSH…. I remember getting “stuck” one time and the nurse was new – outloud she was saying to the other nurse…”should I put the needle in like this, or more like this???!” I wanted to kick her! My arm was a black and blue mess – THAT STINKS FOR ELLA TO HAVE TO GO THROUGH THAT AS A BABY! Let’s pray for a good “sticker!”

Laura Marold on September 11th, 2008 at 3:50 pm #

Hi Tina and Josh. Praying for you to have a blissful night of sleep tonight. I know it’s not likely in a hospital but that’s my prayer today. Love, Laura M.

Joel Snyder on September 11th, 2008 at 6:23 pm #

Ella, So good to see you today and have lunch with Mom. I know that you are feeling better everyday it will just take time. Have a good nights sleep and I will see you tommorrow. Love,Grandpa!!!!!!!!!!!!!!!

Chambers Family on September 11th, 2008 at 7:01 pm #

Sometimes I just want to fly out to Denver and give some of those medical providers a “what for”! I am not there to experience it but I get so worked up for you here in Dallas. Just what you need huh? Thank goodness Ella is such a tough little bug. We are thrilled to hear that she is able to wean off of oxygen and “tolerating” new food. I hope you find some sleep!

Post a comment

Name:  (required)
Email:  (required)