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

Today was uneventful which is a blessing in our eyes.

The Bun slept through last night only waking up a handful of times. Most of the day, she was in a great mood. We took a 15 minute walk and she tolerated it. We were able to get 550ccs of volume into her throughout the day via g-tube. We are hoping this translates to weight gain when we visit Dr. Kays tomorrow.

The only drawback is that she does not seem to be interested in feeding via the bottle. Our high point was 120 ccs last week and now, she is only taking 10-20ccs at the most each time. Sometimes, she is clearly not wanting the bottle at all. The intake over the past few days via bottle has been between 20-40ccs. I can’t figure out what has changed over the past week, but clearly, something is different.

I’ll be excited to see the pediatrician this month, so I can discuss a food strategy with her. I want to see if there are other things that I can consider giving Ella orally since she is 7+months old. I think having something with texture and taste would be good for her and she would like it. We simply have to tread lightly since it could cause her other issues.

She was ultra smiley today as we spent time together. That smile is healing. It reminds me of what is important. It reminds me that we have been through so much, yet there is so much more to come. And that He has a plan.

1 Peter 4:12-13
Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

John & Estela Williams on March 10th, 2008 at 8:10 pm #

Glad to hear that your 1st day of FULL TIME MOTHERHOOD went well. I am so glad that those smiles make your day as it would any parent… Ella is so precious. Hope you guys figure out her feeding so she can get strong and gain weight. God Bless

Char and Jim Jordan on March 10th, 2008 at 8:58 pm #

Just seeing her smile reminds me that she might have not been if the medical doctors could have convinced you that she was not worth the time and energy. How wrong can they be? LOL Aunt Char and Jim

Felix on March 10th, 2008 at 9:06 pm #

Those smiles are worth a million!

Joel Snyder on March 10th, 2008 at 9:20 pm #

Ella, I am praying that you have a good visit with Dr.Kays and have gained some weight. Maybe he and the pediatrician can help with the feeding issues and get you going. You look so happy these days it makes me feel so good. Tina and Josh I hope things keep settling down and that you can get ready for the ordinary challanges ahead. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!

Gloria & Red Jacobsen on March 11th, 2008 at 12:59 am #

She is a million dollar baby! Ella is so darn cute,we think you should submit these darling pictures and her mircale story to a leading magazine!! I do think your blog would make a great book and encourage, other parents whose preborn baby may have a problem, to give life a chance,as you & Josh say the Lord is faithful and does’nt give us more than we can handle,though we tend to think so at the time. your faithful trust in the Lord has rewarded you with such a charming baby!Ella is a poster girl for God’s miracles!! Lots of prayers always, Gloria & Red

The Lizotte Family on March 11th, 2008 at 3:26 am #

OHH how wonderful she sounds. I’m with Glorida and Red. Since finding out about Ella I’ve surprisingly met people who said their baby was diagnosed with CDH and they chose differently than you. They were also told by their doctors that their baby would not survive after birth. Everyone one of them said the same thing. Luckily here in town the medical community is very well aware of the Shands Hospital and know to refer folks over there when they find CDH. That is so relieving to me. My ob said they have referred 1 couple to Shands.

As always praying real good for you.

Sharon Moran on March 11th, 2008 at 7:15 am #

Hi Josh, Tina and the beautiful Ella. I ran across your blog when I was visiting Par’s site. Par’s grandpa Darrell & grandma Mary Rich are good friends of mine here in Asheboro, NC. I look forward every morning seeing how Ella’s day has gone. She has truly been an inspiration to so many as well as her parent’s. I found this today and I thought I would share it with you.

I was a Mom

I never tripped over toys or forgot words to a

I didn’t worry whether or not my plants were

I never thought about immunizations.

Before I was a
Mom –

I had never been puked on.

Pooped on.


Peed on.

I had complete control of my mind and my

I slept all night.

Before I was a Mom

never held down a screaming child so doctors could do tests.

Or give

I never looked into teary eyes and cried.

I never got
gloriously happy over a simple grin.

I never sat up late hours at
night watching a baby sleep.

Before I was a Mom

I never held a
sleeping baby just because I didn’t want to put him down.

I never
felt my heart break into a million pieces when I couldn’t stop the

I never knew that something so small could affect my life so

I never knew that I could love someone so much.

I never
knew I would love being a Mom.

Before I was a Mom –

I didn’t
know the feeling of having my heart outside my body.

I didn’t know
how special it could feel to feed a hungry baby.

I didn’t know that
bond between a mother and her child.

I didn’t know that something so
small could make me feel so important and happy.

Before I was a Mom

I had never gotten up in the middle of the night every 10 minutes
to make sure all was okay.

I had never known the warmth, the joy, the
love, the heartache,

the wonderment or the satisfaction of being a

I didn’t know I was capable of feeling so much, before I was a

The Brittain Family on March 11th, 2008 at 8:34 am #

It seems logical that now that she’s taking in more volume this week that you are seeing a more satisfied baby girl (sleeping better at night, happier during the day, etc.) It would also make sense that if she’s less ravenous that she wouldn’t have the same motivation for bottle feeds. One thing you could ask your feeding team is striking a balance between having her get the volume she needs vs. “encouraging” her to use her bottle/ future solids, etc. Every baby and circumstance is unique and we pray that the Lord will continue to bless you with the strategies you need! He already has in such amazing ways. Praying that the visit goes well today. The kids love seeing Ella photos and are still so excited to know that she’s still home!

Matt, Abby, Austin & Caed on March 11th, 2008 at 12:52 pm #

We’ll keep praying, especially about the food issue. She looks really good in those pictures! There really is nothing like seeing your child smile…what a blessing.

Jeff Jacobson on March 11th, 2008 at 2:44 pm #

Absolutely loving the photos of The Bun 🙂 Hope she starts eating more! Thinking good thoughts for you all.

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