Posted (Tina) in All Posts on March-4-2008

Ella was uncomfortable for most of the night and we were hanging out together. At 12:30am, I gave her some Tylenol because she felt warm. As the night progressed, her fever got worse and she became fussier. Instead of trying to fight against the inevitable, we went out to the living room area at 1:30am. We were up most of the night and into the morning.

At 6am, she had a temperature rectally at 100.9, but this was after I had already been administering Tylenol a couple of times, so she was probably warmer than that initially. Also, she had a melt down requiring a boost in oxygen. After that, I think she was so exhausted from the restless night, that she finally fell asleep at 6:30am and slept for an hour. I slept on the couch near her travel crib and that was the only true stretch of sleep last night. I savored every minute.

Grandma Eusey left today and Grandma West joined us. So fun for Ella to have time with both of her grandmas!

When we went to the doctor, we had to stop by the lab and get blood drawn. Hopefully, we will hear the results in the next day or so. That process is always traumatic for Ella, but she did pretty well. She was upset, but it made it better that they were quick and efficient in drawing her blood.

We weighed in Ella, but unfortunately, she lost weight. She was 11 lbs, 4 ounces. If you think about it, we have had feeding issues for awhile now. I think it is because we have not even been able to get all the 550ccs into her little body each day.

The good news is that we are making progress with her feeds. We have gone through another day where we were able to meet the goal of getting Ella to eat 550ccs. The past 2 days have been successful – – this is the first time since the latter part of January, so we feel it is a great accomplishment. We are hoping that we can meet the goal of getting 550ccs in her each day and that it will help her put on weight for next week’s appointment.

Ella had more granulation tissue around her g-tube, so Dr. Kays had to burn it off. Always fun to watch! I’m hoping that this decreases over time.

My favorite part of the appointment was watching Dr. Kays trying to get Ella to look and him and flash a smile. She wouldn’t give him one. Also, he asked me, “How many days has it been since you were in the hospital?” I replied, “Oh, I don’t know…” Immediately, he raised his hands and waved them in the air, “Yeeeaaahhhh! We’re making progress!”.

Back in the NICU, whenever we would see Dr. Kays at bedside, we would remind him of how many days it had been since we started the journey, especially as it continued and continued. So when he asked me how many days it had been since we left the hospital and I didn’t know off hand, he counted that as great progress. He reminded me that albeit slow, we have made progress. “I mean, look, we are not in the hospital”. I told him that I appreciated his perspective, for reminding me that we have made great progress.

After the doctor appointment, we were able to see Jordan Brantley. She looks so amazing. When we were weighing in together, she tipped the scales at 17 lbs. She is not on oxygen and looks happy and alert. You would never know that she ever had a rough beginning in the NICU. And it was so great to see Julie and Mary Lou Brantley. They have been a source of support over these months and although the visit was brief, it was so nice to see familiar faces.

Dr. Kays is right…we have made progress. Just scrolling to the top of this blog and looking at Ella’s photo in the upper left hand side is a clear reminder of the progress that we have made over the months.

We’re so thankful that we have the Bun in our lives. We just love her so much and look forward to future days where she will be feel better more of the time than not.

Psalm 69:30

I will praise God’s name in song
and glorify him with thanksgiving.

Eusey Family on March 4th, 2008 at 8:54 pm #

We are all reading your post as the kids are getting into bed. We are going to say our prayers and as always will include Ella.

Lots of love from RSMRCR.

John & Estela Williams on March 4th, 2008 at 9:17 pm #

What an awesome reminder… you have made tremendous progress… Thank God.
Ella is so beautiful and those eyes are amazing. Ella will get there! Love you guys.

Char and Jim Jordan on March 4th, 2008 at 9:20 pm #

She is such a special little one. It is nice to see both Grandma’s enjoying her. Give Lynn our love. Hang in there. Progress, is progress. The nights cannot last forever. Even though it seems like it. We are proud of your efforts. Love, Jim and Char

Steven and Terri Trainer on March 4th, 2008 at 9:24 pm #

Sister, praying that God will give you the stamina necessary to finish your job and care for the Bun, and that you will maintain good health and perfect peace. The progress you 3 have made is AMAZING. Hang in there. This is but a season that will pass. You are a wonderful mommy and your little girl will grow to admire your many gifts, talents and strength. You are loved and missed! TT

Joel Snyder on March 5th, 2008 at 1:42 am #

Ella, Keep up the baby steps forward and some day we will look back and say that was no big deal. I am glad to see you are having a good time with your Grandmas. Tina and Josh I am praying for your strength and stamina during this stessful time. I must agree with Dr.Kays that you have made great progress. I will check on you later. Love,Grandpa!!!!!!!!!

The Brittain Family on March 5th, 2008 at 5:59 am #

We can simultaneously agree with Dr. and sympathize with the complete stress and difficulty of the feeding issues that you guys deal with day in, day out. We also believe Ella’s (and yours) best days are ahead of you and hold on to God’s promises to never leave you. We’re trusting the fever goes down and that her little body will be able to accept all the nutrition she needs to grow healthy, strong, and chubby! Press on in the joy of Him!

Matt, Abby, Austin & Caed on March 5th, 2008 at 7:02 am #

Just take it one day at a time. I know you both get tired (Abby and I are right there with you…I think we each got almost 2 hours of sleep each last night…and we’re praying for you three every day. You two are doing a really, really good job caring for Ella and it’s obvious how much love surrounds that little girl. God is in control.

Joan and Steve Odell on March 5th, 2008 at 8:26 am #

She looks beautiful – know the times are trying and wearing but they will pass. Each day is a precious gift and none of us should take them for granted. He is watching over and guiding the three of you and all the docs and nurses at the hospital. Her first Easter is fast approaching. Enjoy today – hugs and prayers – Steve and Joan

Eli Brown on March 5th, 2008 at 9:55 am #

It’s hard to think positive when you are sleep deprived. I will pray for a good night’s sleep tonight.

Tilman Ellis on March 5th, 2008 at 1:27 pm #

Ella is an inspiration – Thank you for sharing her story. Wishing you great luck and continued great health.


Laura Marold on March 5th, 2008 at 4:48 pm #

Sending you love and prayers. Love, Laura M.

The Lizotte Family on March 5th, 2008 at 4:57 pm #

Go Ella Go Ella! She is doing so great! This is just the fruit of all her work.
Big Hugs,

Janiss Robles (Philippines) on March 5th, 2008 at 8:08 pm #

Dearest Ella, You are such a wonderful creation. I’m a young mom of my 2-year old daughter from the Phil and I just want you to know that even though I’m miles away, my prayers are always with you. You are an inspiration. To Josh and Tina, thank you for sharing her story. I am always looking forward to see your beautiful daughter. I thank God each day that I see her. I admire you both for your hard work and strong will not to give up. Ella must be feeling it… Be strong and in the hardest moments count on many many hearts all over the world that are praying for Ella’s complete recovery. Love, Janiss and family

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