Posted (Tina) in All Posts on March-25-2008

Today was a good day for Ella.

Our highlight was visiting Dr. Kays. Unfortunately, Ella did not gain as much weight as she should have over the past 2 weeks. She only gained 100 grams, taking her to 11 lbs, 14 ounces. Last time, she weighed in at 11 lbs, 5 ounces. So, it was better than losing weight or staying the same but we were hoping for more.

I did mention that we did not have the oil to place in her nightly feeds. So Dr. Kays asked the nurse practitioner to go over to the phone and make a call to the nutritionist. She came back and informed us that we are to use corn oil. We are to place 3.5ccs for her nightly feed of 200ccs of formula. Apparently, this small amount will give her the additional calories and extra weight gain. Only time will tell. Dr. Kays admitted that he is not sure what the corn oil will do to her stools. Yippee…that will be interesting.

Regarding her labs from last time, all her electrolytes checked out fine. Her BUN was 22, which was down from the prior labs of 29. I thought it was strange to have that much of a change and I inquired. Dr. Kays explained that there can be a variance but it is in the right range, so he is not concerned. Thank goodness that we did not have to do labs today.

Dr. Kays was not upset that we reduced Ella’s oxygen to 400mls. He noted that her color looked good and asked how her saturations were looking at home. Although the office monitor only picked up a saturation of 94 again, I explained that her numbers are good at home according to our pulse oximeter. That was enough information for him.

There was a bit of granulation tissue around her g-tube, so they burned that off again. I’m so glad it doesn’t hurt Ella – – she barely notices that it is being done. We had less granulation tissue this time around, so I’m hoping that it continues to decrease.

Aside from offering corn oil, Dr. Kays said that he did not have a lot to offer. He thought she looked good. We just need her to gain weight. We are hoping that the oil does the trick.

When I asked about our next appointment, he offered 3 or 4 weeks from now. In 3 weeks we already had an appointment with the pediatrician for her next synagis shot. So, that meant 4 weeks was the magic number. I can’t believe that we graduated to once every 4 weeks. That is good – – we are going the right direction.

When we go to see Dr. Kays next time, he ordered for Ella to have an echocardiogram. I did let Dr. Kays know that it seems that Ella is taking longer to turn purple/blue when she gets upset. She can go there, but it takes more and more. I asked if maybe that indicated that she was shunting less. He explained that it simply means that she is growing, her lungs are getting stronger and that she is getting better.

Dr. Kays did try to have Ella sit up. He even pushed her by having her lean over and place her elbows down between her legs. She pitched a fit. She simply has no strength. I’m hoping that our physical therapy appointment tomorrow goes well.

Please pray for Ella to gain weight, that she will not have any adverse side effects from the corn oil, and that she will be receptive to the physical therapist tomorrow.

Kristen on March 25th, 2008 at 8:36 pm #

Atta girl! Ella you are a dream!

Kristen on March 25th, 2008 at 8:37 pm #

What I mean is. . . you are a dream come true!

Gloria & Red Jacobsen on March 25th, 2008 at 8:40 pm #

She is as amazing as her parents! What a beautiful baby girl! One day at a time and she grows bigger and stronger,but I don’t see how she can get any cuter!! Prayers every day for all of you! All the best! Gloria & Red

The Laz Fam on March 25th, 2008 at 8:43 pm #

I love the idea that she “pitched a fit” ~ shows how much fight she’s got in her! Can’t wait to hear how tomorrow goes!
Blessings ~ KTJB

Jim and Char Jordan on March 25th, 2008 at 9:03 pm #

Tina and Josh, I think Ella’s grandpa is right. It is best to take those baby steps and just keep on inching forward. Perhaps weight too. We are hoping for the best. We know you two are doing a great job. LOL Aunt Char and Jim

Joel Snyder on March 26th, 2008 at 12:58 am #

Ella, I am happy that you had a good appointment with Dr.Kays. I am praying that the addition of corn oil will help you start to gain weight. Good luck with the physical therapist I hope you have fun. Taco had her visit with the eye specialist and she is on new medicine and hopefully will be getting better in a couple of weeks. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!

Steve and Joan Odell on March 26th, 2008 at 5:26 am #

Moving forward and holding is the ticket. Praise God for Ella and all she has journeyed through. She looks wonderful and is a blessing to us all. Enjoy today and each other. Prayers and hugs = Steve and Joan

Matt, Abby, Austin & Caed on March 26th, 2008 at 7:57 am #

Slow & steady wins the race! Go Ella go! Glad to see she continues to make progress. I especially liked the part where Dr. Kays said that she’s growing, her lungs are getting stronger and she’s getting better. We’re still praying for you three, every day.

The Lizotte Family on March 26th, 2008 at 3:44 pm #

Go Ella Go Ella!!! Nice work. She must be burning extra calories on her lung development. It sounds like we are moving right a long no doubt about it before you know it she will be out running you two. HAHA!! Mark my words
XOXO-with prayers for you guys

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