Posted (Tina) in All Posts on March-30-2008

Today was relaxing. We were able to secure late check out at the hotel and spent the morning being lazy together, all 3 of us.

Another exciting first feed of the day: once again, she took 75ccs via bottle. The other feeds did not turn out to be real successful, but we are excited that she did another entire bottle orally.

Regarding bottle feeding, we have a few goals to work towards. When we are feeing her via bottle, we are connected to her g-tube at the same time. This is to let any air out while she is eating. Eventually, we hope that she gets a better sucking technique and swallows less air, so that this step is not required.

Also, we hope to work up to her taking 4 bottles of 75 ccs each, per day. We know that she can do 1 bottle per day, but we need to work up to 4 bottles a day. And of course, she is still fed at night via a food pump to make up for the additional volume and give her some extra calories.

Finally, as she gets better technique, the food should go faster. Right now, it takes up to 30 minutes for her to finish the 75 ccs. It should take about 10 minutes once she has perfected it.

It will likely be a long time until she is able to eat enough orally during each day to not require a g-tube. And although we are a long way off, it is so encouraging to see her meet these small milestones.

We have physical therapy tomorrow afternoon. That will be our big event for the day.

We have noted that Ella’s face looks fuller too. In the past, this has not been a good sign. It typically means that she is retaining fluid. The biggest change we have made since past Tuesday is adding corn oil to her food at night. Although we did not see a drastic change, it is possible that it is slowly causing her to retain fluid. If she retains too much fluid, it begins to affect her respiratory status. This is what sent her back to the hospital 4 days after her initial release from the NICU. It is our hope and prayer that it is not affecting her fluid status and that she is truly just getting chubby cheeks!

It was so nice to getaway again this weekend. We are excited for the day when we can go home. Gainesville is a small town without the amenities of a large city, and being city people, we crave the comforts of a large city.

There are so many more services and places to go within the Denver metro area, so it won’t necessarily require a trip if we just want to get out of the house with Ella. Right now, it requires a 2 hour drive to any major city with interesting services and amenities.

We’re trying to enjoy our time in Florida, but admittedly, we are anxious to go back home. When we started this journey, we anticipated being here in Florida for 8-12 weeks. We could have never expected that Ella would stay in the hospital for 6+ months. And we know that it was the right decision to continue to stay for a time after her release from the hospital.

Now, we are praying for wisdom and guidance on when to go home to Denver. Also, how to get Ella back home to Denver. Please join us in praying that we would not be anxious, but rely on Him to reveal His plans to us.

Philippians 4:6
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Jim and Char Jordan on March 30th, 2008 at 7:57 pm #

She is truely something to be thankful for. We are praying daily most times several times daily. We know you need guidance with such precious cargo. Rely on the Lord. All will go to his plan. Lol Aunt Char

Joel Snyder on March 30th, 2008 at 9:29 pm #

Ella, Good to see the traveling show is back to Gainsville safe and sound. Good job on the bottle feed and soon this hurdle will pass like all the rest slow and steady. Your pictures look great and I am praying that your PT session goes well tomorrow. I will check on you then. Love,Grandpa!!!!!!!!!!!!!!!!!

Motormouth on March 31st, 2008 at 4:55 am #

Happy CDH Awareness Day, Miss Ella!

Sheila Par's great aunt on March 31st, 2008 at 6:05 am #

Ella, You look great and we can tell that you are growing. We keep a check on you everyday and we continue to pray for you and your mom and dad. Keep up the good work and have a great CDH day. Jim and Sheila

Steve and Joan Odell on March 31st, 2008 at 6:05 am #

She looks so good and has such a sweet personality. So glad you got out for the weekend. Steps towards going home – Trust in the Lord and He will take care of all her needs and concerns. Prayers and hugs – Steve and Joan

Grandma on March 31st, 2008 at 8:44 am #

Dear Baby Ella You know I cant help but to taalk to you every day when I get the new blog pictuers . there is so muc expression and personality there. Sorry I dont post alot but we keep track every day and just love to see your sweet face. I am so looking forward to you comming home to Colorado and getting to see you again
Lots of LOVE from The West Family
and Grandma

Matt, Abby, Austin & Caed on March 31st, 2008 at 1:16 pm #

She looks better and better every day! God is so good…

We did the March of Dimes Walk for Babies this past Saturday (almost 9 miles…with Caed…in the Baby Bjorn mostly…uphill…alot…and I’m overweight…alot…and now I’m really sore…a whole lot) and there was a CDH baby’s story on one of the posters! It was really neat to see. I wish I would’ve been able to write down the information for you. We’re contially praying for you three.

Darrell Rich on March 31st, 2008 at 2:40 pm #

We enjoy keeping up with Ella’s progress. She is such a precious gift from God and you are wonderful people. We will keep praying for Ella and her parents.

Baby Par’s grandparents in N.C.

Chambers Family on March 31st, 2008 at 8:42 pm #

I didn’t notice the fullness in her face until you wrote it and I looked back at day 247 and thought how amazingly tuned in you are to little Ella. Her little eyes are puffy. She is blessed with life because of the parents she has been given. We pray she tolerates whatever retention is going on and that she is able to handle it without medical intervention.

She is beautiful and smiley! I love here pictures every day!

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