Posted (Tina) in All Posts on February-14-2008

Happy Valentines Day from the Bun.

We went to the pediatrician’s office today. Ella had a great check up and Dr. Sarantos agreed that Ella is looking wonderful. She weighed in on her scale at 11 lbs, 7 ounces.

We asked about the vaccines and breaking them up, but they use a combo vaccine treatment so it is not possible to break them out into separate ones. Also, we are not planning to go back to the pediatrician for 1 month, unless Ella has any other issues. And the less visits that we have to make to the office, the better. Right now, it takes 2 people to take Ella to any doctor visits. She does not like the car seat and it requires someone distracting her, and increasing oxygen when she gets too upset.

So, Ella received her second round of vaccines as well as a synagis shot. We will need to return next month for another synagis shot and go back in 2 more months for another round of vaccines.

Dr. Sarantos was concerned along with us about Ella’s feeding issues. She agreed that it does not seem right and that there might be something else wrong. If this was the first time that Ella was feeding, it would be different. But the fact that she was feeding on large volumes for weeks in the NICU and now within the past 2 weeks she is not able to, along with the fact that Ella is getting bigger and should be tolerating even larger volumes of food, stood out as a red flag to her. She had a few thoughts and was going to call and talk to Dr. Kays before proceeding.

When we got home, it had been about 4 hours since Ella had any food. It was time for some medicines as well as food, so I started a slow feeding of 35 ccs over an hour. About 35 minutes into the feed when she reached 20ccs, she pitched a fit. It was not getting better so I stopped the feed and decided to vent her. With all the crying she did, there was no doubt that she had to have air in her belly.

Once I vented her, she was still crying and pushed the 20ccs up into the syringe. Then, she started to relax and the food started to drift back into her belly. Normally, if there is any air in her belly this process will fix the issue. Within a couple of minutes, she started crying hard again indicating that she was in pain.

We went through this back and forth process 4 times with the same 20ccs of food. I was trying to get her to take it since I had given 3 medicines with the food, but she continued to get more and more upset. I had already increased her oxygen to 1 liter to help her through the episode. Yet, it seemed that there was nothing I could do to console her.

Finally, I decided the meds were not that important and just let her push all of it back into the syringe and clamped it off. I yelled to Josh to come down and help me get Ella some more oxygen. He came over and we used blow by oxygen to get her to catch her breath and calm down.

This was one of the worst episodes related to food that we have seen since her switch to Alimentum, especially since we have been delivering it on a slow rate. Dr. Sarantos stated earlier that she doesn’t think it is the food itself; she agrees that it seems like a volume issue.

We called Dr. Sarantos’s office to let her know that Ella just had a real bad episode with 20ccs, even though she had not eaten in 4 hours. When the phone rang again, it was her office calling back to ask us to go to the hospital in the morning to the radiology department. She talked to Dr. Kays and they decided to get a test tomorrow where they place contrast dye through her g-tube and watch how it works its way through her tummy and intestines.

Dr. Sarantos’s initial thoughts were possibly a minor bowel obstruction or gastroparesis (delayed gastric emptying where the stomach fails to pump the food correctly through to her intestines). Given that Ella’s stomach and intestines were completely rearranged during her repair surgery, there is a possibility of either of these scenarios.

Again, it would be different if Ella had never tolerated bolus feeds. But since this is a new behavior over the past 2 weeks, it is definitely something that we want to research. It was nice to be reaffirmed by Dr. Sarantos that this is not a normal progression for Ella considering her history of feeding.

We will be visiting the radiology department tomorrow morning at 8:30am for the test. Please pray that the test will provide insight to Dr. Sarantos and Dr. Kays. We don’t want anything to be wrong with Ella, but at this point, neither doctor knows what to recommend on how to fix her feeding issues unless they get a better glimpse of what might be happening to her.

Either way, this did not dampen Ella’s first valentines day. A few days ago, she received a cute valentine from Par with an updated photo. This made her smile.

Thanks to everyone for your continued prayers for our baby girl.

1 Thessalonians 5:17
pray continually;

John & Estela Williams on February 14th, 2008 at 8:14 pm #

Feliz Dia de Amores… hope you had a wonderful 1st Valentines Day Ella.

You look beautiful, keep up the good work and hopefully they figure out your feeding issue tomorrow morning.

Love The Williams

The Lizotte Family on February 14th, 2008 at 9:10 pm #

Happy Valentines to the West Family!!! This kid is determined to tell you something! I will pray the radiology tests tomorrow to show some kind of insight for you.
Big Hugs!!!

Laura Marold on February 14th, 2008 at 9:25 pm #

She is adorable!! I love the picture where she is yawning. So cute!! Happy Valentine’s Day. Love, Laura M.

Tracy Schultz on February 14th, 2008 at 9:52 pm #

It’s great to see her so smiley despite her pains! We will pray that tomorrow’s test will show an underlying issue that can be resolved easily! Enjoy your precious time with her.:0)

Char and Jim Jordan on February 14th, 2008 at 10:52 pm #

Happy Valentines Day to the West Family. I just chuckle everytime I see just how resilient Ella seems to be. If we, as adults were in the same fix I think it might take Morphine or some other powerful drug to make me smile. She is one beauty. Love, Aunt Char and Jim

Julie Kirk -Saudi Arabia on February 15th, 2008 at 12:12 am #

we have been out of the Kingdom but have been checking on Ella along the way.
She is the sweetest little valentine we have ever seen.
We pray that the problem be revealed in radiology, along with an easy solution.
God Bless Ella and her mama and daddy.

Marge (Indiana friend of Keith & Liz Mueller - Chris' parents) on February 15th, 2008 at 7:37 am #

She’s the sweetest Valentine I’ve ever seen; love that smile and the yawn is just adorable. Continuing prayers for all of you that each day’s challenges will become easier as God holds you all in His loving arms.

Rachel & Ava on February 15th, 2008 at 7:40 am #

That picture is priceless, she looks so beautiful and happy, and who wouldn’t be with parents like you, so watchful and wonderful to follow the plan God has set before you. It is a reafirmation everyday to see the work of God through your family

Williamsburg on February 15th, 2008 at 8:10 am #

After a difficult day of our own yesterday, I was driving Kelby to school today and watching the sun rise over the plains, reminded that His mercies are indeed new every morning; you only have to look into Ella’s beautiful bright eyes and her smiles in spite of it all to have evidence of it. Praying along with the rest of the warriors that new info will bring help and clarity to the feeding issue and that His love will continue to uplift, uphold and sustain you through each and every day. All our love. XOXOXO

Joel Snyder on February 15th, 2008 at 8:14 am #

Ella, I worked late last night and didn’t get a chance to read the story of your first Valentine’s day until this morning. I am glad to hear that for the most part your check up was good. I am praying that the Doctors can solve the problem with your feeding. I am going to your house in Lone Tree today and check things. I will check on you later. Josh and Tina keep up the unbelieveable care that you are giving Ella. There are not words that can express how I feel about the way you are taking care of her. You are the BEST!!!!. Love,Grandpa

Heidi Ham on February 15th, 2008 at 11:30 am #

OMG I could just eat her up! She is so adorable. I wanna kiss her face all over! I hope the test went well this morning – I am glad they had a plan to go with instead of a wait and see. Hopefully it will show you something that will help.

Love, hugs and kisses from us all!

Eve Sheridan on February 15th, 2008 at 4:07 pm #

These Valentine pics of Ella immediately brought a smile to my face. What a cutie pie girl! Thinking of you three and hoping you had a successful visit to the radiology dept. Josh & Tina, I also hope you get some well-deserved rest to catch up a little :-). You guys are such wonderful parents to little Ella.

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