Posted (Tina) in All Posts on February-16-2008

Today was a great day for Ella.

She kept me up all night which was not fun; she was just restless. Finally at 6am, I gave up and moved her out to the living room, food pump still attached because she was still on her continuous feed. After an hour or so, she decided that she was tired. So, she took to her play crib and I opted for the couch. Of course, Daddy was still snoozing. I figure that one of us should get sleep and since he has been burning the midnight oil so much for his job, I suggested that he sleep in the guest room to maximize his zzzzs.

Around 11am, Nurse Marla came over to visit with Ella. At first, Ella was snoozing. Remember that since she didn’t sleep that well last night, she was taking the opportunity to catch up on her beauty sleep. Finally, I woke her up so she could visit with Marla. They had a great time together.

After Marla left and it was time to feed Ella, I just decided to try bolus feeding again. If she could handle 45ccs via bolus at the hospital on Friday when we were in a pinch, why couldn’t she now? The only difference was that she had not eaten for hours on Friday whereas today, it had not been that long since a feeding.

Ella was asleep so I figured it was an optimal time to try it. If her body was going to be in discomfort, it would wake her up since it has done that in the past. I tried 25ccs and it went fine. I was elated. From there, I decided to try 45ccs the next time, figuring that the hospital experience was worthy to use as a sample of her tolerance.

Once again, it went fine. I was so happy. To try and catch up on her volume for the day, I was doing a bolus feed about once per hour, so I could catch her up on calories. There was only one time where she was wide awake and did not seem to tolerate it towards the end of the bolus. After some backed up into the syringe, I decided to clamp it off and remove the discomfort. I saved that food for later and just went with the amount that she tolerated.

Realistically, this problem has been intermittent so I realize that at any point, she could retch hard and decide to not tolerate the bolus feeds. But at this point, I think it is worth pushing through and continuing to try especially since we have confirmed that she does not have any blockage or obstruction.

We are going to try bolus feeds tomorrow too, more frequently throughout the day and see how it goes. As I am sure you can tell from the pictures, she looks so good; it is truly the feeding issue that is holding up her recent progress. Please pray that Ella will make it with flying colors and that she will not experience any discomfort.

We have not been able to schedule occupational therapy since her feeding regiment has been disrupted (the main thing that they try to do is teach oral feeding skills). So please pray that we can overcome this feeding issue and that she will continue to gain weight. She is small for her age and gaining weight will only help her get stronger.

We have not heard back on her blood lab work from this past Tuesday. We consider that it must be in the ranges that Dr. Kays wants otherwise we would have received a phone call.

As a side note, the cat has been a bit jealous since Ella came home from the hospital.

I just found out today that a CDH baby that was born in Denver past away a few weeks ago. It made my heart heavy. Since I have not talked to them recently, I don’t want to name any names, but if you think of that family, please lift them up in prayer. As many of you know, I strongly believe that Ella would not be with us today if we had stayed local in Denver.

2 Corinthians 1:3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

Please pray for direction from the Lord concerning any involvement in education and awareness for CDH. If we are to be used in any way to help get across the message to the medical community about this birth defect, we want to be obedient. It just seems that the message out there is automatic 50% chance of survival and they try to promote termination up to the 24th week of pregnancy. And hearing stories of countless babies that do not survive needs to change as well. There is not a standard way to treat CDH, but we feel strongly that the track record for Dr. Kays speaks for itself. He is the best that is out there for treating this birth defect with an overall survival rate of 92%.

We’re so thankful that the Lord provided a way for us to come to Florida to have our baby girl. It has been tough to be away from home, but we can’t imagine it any other way.

Kristen on February 16th, 2008 at 9:02 pm #

So happy for your breath of fresh air today! Way to go!

Laura Arneson (Adrienne' friend) on February 16th, 2008 at 10:06 pm #

Love, love, love that’s what it’s all about…since God loves us we love each other…. Family and home takes on a new meaning at this season of life, we all have a family of origin and family of choice. Looks to me by the pictures, the time your man spends with his precious girls and the sacrifices that he has made that you chose well. Lack of sleep, raw emotions and tough issues all dealt with in love and the best interest of your little family show me that you are a woman of character, a Titus 2 woman. I see the blessings that God has given to the community that you have raised for yourself while out of Colorado, that sure looks like home to me. You are blessed, your family is blessed and your community family is blessed by the choices you have made for Ella and this sweet little family. Blessings and peace

Joel Snyder on February 16th, 2008 at 10:32 pm #

Ella, You look marvelous darling and I think you are feeling good also. One baby step at a time and things will work out. Tina and Josh I am praying for you to rest and refresh yourselves. It has been quite the battle and you both are my heroes keep up the fight. I will check on you both later. Love, Grandpa!!!!!!!!!!

Char and Jim Jordan on February 17th, 2008 at 2:33 pm #

One more time I will try this comment box. I have always tried to think outside the box. But now I am trying to get my message inside this box. You all look wonderful. We are praying that these problems will just plain disappear. All our LOVE, Aunt Char and Jim

Felix on February 17th, 2008 at 3:44 pm #

Love Ella’s smiles!

Gloria & Red Jacobsen on February 18th, 2008 at 9:53 pm #

We are so glad you & Josh have given Ella the very best chance for life’ We thank the Lord for Dr. Kays and others like him that work to save these babies. God has brought Ella a long way and is blessing all your efforts and Dr. Kays. Thank you for allowing us to be on your prayer team, it’s been amazing to see her progress and share your ups and downs. Ella despite her difficulties always gives the cutest and best smiles in the world! (and the world needs those smiles of her’s) Prayer for the West family & Dr. Kayd team and little patients!,always! Gloria & Red

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