Posted (Tina) in All Posts on March-9-2008

Today was a nice day with the Bun.

Ella had a restful night of sleep. We gave her a bath today and went outside for a 15 minute walk since the weather was perfect. She seemed to tolerate both well. In general, she was just in a good mood. Also, we decided to put her in the car while we ran some errands. The more we can get her used to the car, the better.

While I stayed in the car with Bun, Josh went upstairs to the pediatric floor of the hospital. A friend that we met in the NICU last December had her son readmitted. Initially, his CDH was less severe and he was only in the NICU for about 1 month, but he returned due to some complications with scar tissue. He had surgery to repair his intestines and bowels the other day and is in recovery on the pediatric floor.

Unfortunately, it is just as tough for her as it was for me at the beginning of February. The nurses are not attentive and you cannot leave your child because it is not a locked down unit. So while her husband and 2 others sons are 2 hours away, she is trying to live in the hospital room with her baby boy and hope that he heals well.

It is that lonely feeling where you feel like you have no support, yet you are in the hospital. It is such a culture shock from the NICU.

We felt led to visit her in the hospital and bring her a bag of goodies, just like some friends did for us. If you remember, please pray for her and her baby boy (Hope and Jayden).

Again, we have only been home with Ella for 29 days total. Yet driving through the parking structure, it had felt like an eternity since we had been there. I was happy to have that feeling. I do not miss it, that is for sure.

We have been doing well with her food intake this week. Although her oral skills have not improved, it is a great milestone to be intaking 550ccs each day. She is still retching and having some discomfort, but it is tolerable. Please pray that she will have gained weight when we go to see Dr. Kays on Tuesday.

I wish the weekends just continued and continued. It was nice hanging out as a family today, just the three of us.

We will miss the Grandmas – – they were a great help with Ella and to us by cooking, cleaning and just giving us support and love during the past 2 weeks.

All of us set our clocks forward today and it made me reflect on how in an instant, we will not be fast forwarding an hour, but months or years. I’m hoping and praying that these initial days of her life are the toughest ones for Ella and that as each day passes, her health issues will become less and less.

Nahum 1:7
The LORD is good,
a refuge in times of trouble.
He cares for those who trust in him.

Michelle Herman on March 9th, 2008 at 7:32 pm #

Hi Tina and Josh! Sounds like a wonderful weekend – Ella continues to amaze with her wonderful smiles! Glad you had so much help with the Grandma’s. I can’t believe you all had to take shelter in the hospital – when it rains it really does pour! We miss you already at work – it won’t be the same without you!!

Kelli Billman on March 9th, 2008 at 7:43 pm #

The proof of God’s love is in Ella’s smile. I know my heart smiles every time I see it.

Gloria & Red Jacobsen on March 9th, 2008 at 8:46 pm #

Ella”s pictures are so darling! Her personality just shines through! We thank the dear Lord she is doing so well! Prayers for your family always, Gloria & Red

Joel Snyder on March 9th, 2008 at 9:27 pm #

Ella, I am so happy to see that you had another fabolous day with Mom and Dad. You will be missing those two terrific Grandmas they always make things better. Keep up the steady progress and before you know it you will be on your way home. Josh and Tina the weather is finally turning around a bit and winter is almost over. Taco and Manny are loving it. I will catch up with you later. Love,Grandpa!!!!!!!!!!!

The Rainey Family on March 9th, 2008 at 10:22 pm #

We are so glad to hear that Ella is doing so well. I just wanted to let you know how awesome this blog is, and how great it is to be able to hear about each day Ella has. What a wonderful keepsake this will be for all of you! If you aren’t already, you should print out each entry and put them all in a scrapbook for her to read when she is older. Just a suggestion! You guys are awesome parents, and Ella is a lucky little girl to have you both!! We will keep praying that things continue to go well for you all!!!

Lesli on March 10th, 2008 at 3:11 am #

Glad you had a good day! I love getting my coffee in the morning and settling in for “time with Ella”. The pictures are adorable…you can tell she sure enjoys that bath! Glad you were able to get out a bit today!
We will be praying for you, and your friends at the hospital.

Love, The Richards

Johnny & Mary Lou Brantley on March 10th, 2008 at 4:18 am #

It was great seeing all of you on Tuesday. We were so glad to see Ella feeling better. She looks beautiful!! We hope you have a wonderful week and the feedings will continue to improve. You’re doing a great job. As always, you’re both amazing! Our thoughts and prayers are always with you. We will be praying for Jayden also.
Love, Johnny and Mary Lou

Matt, Abby, Austin & Caed on March 10th, 2008 at 5:37 am #

It’s amazing (words don’t do it justice-they never do) how God can make something like seeking refuge from a storm in a hospital lobby and turn it into a re-fueling, re-affirming connection between Him and His children. I’m sure it was no accident that happened…and who knows who might have been nearby listening that needed to hear Ella’s story and the message of faith and love that has surrounded her since she was created. We’re praying for you three every day and are so thankful that we got to meet you. God is so good…
How great is your goodness, which you have stored up for those who fear you, which you bestow in the sight of men on those who take refuge in you.
Psalm 31:19
Praise the Lord, O my soul; all my inmost being, praise His holy name. Praise the Lord, O my soul, and forget not His benefits.
Psalm 103: 1-2

Rupa Rao on March 10th, 2008 at 7:52 am #

Hi Tina and Josh,
I’ve been a silent admirer of Ella’s for a long time now and am soo inspired by her story and you guys as well. Just know Ella and the two of you have inspired soo many of us to be better parents and I wish you three nothing but the very best in life. Take care — Rupa

Fran on March 10th, 2008 at 8:31 am #

Tina, love the picture of you from Ella’s point of view. I believe you have made me smile a few times with a similiar face! Know excactly what Lesli means. Except with me, as you know Tina, it is a cup of tea and settling down for “time with Ella” Ella’s smiles are a wonderful way to start the day! Happy to hear that you had a good weekend.
Thoughts and prayers for you and your friends.

Raewyn on March 10th, 2008 at 8:42 am #

Like I have said in earlier comments you don’t know me at all but I follow your blog everyday. My morning consists of coffee, check emails and check on Ella. Amazing how a stranger can be so affected by your story. I am so happy that you are getting in a routine and things are settling down for you. I think with my “normal” babies how crazy those first few months at home was. I didn’t have to worry about feeding issues, g tubes, oxygen etc and having spent 6 months in a nicu with various people looking after my baby. You guys are an inspiration to us all. Keep up the good work. Keep posting those beautiful photos.

Laura Marold on March 10th, 2008 at 7:20 pm #

Josh and Tina, I’m soooo glad you are getting some much needed sleep. The pictures are priceless of you, Tina. Keeping you in my prayers!! Love, Laura M.

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