Posted (Tina) in All Posts on January-23-2008

Today was another day of progress for Ella.

Her food was switched to 50% breast milk and 50% Similac 27 calorie. Also, the total fluid intake went up slightly. All of this in an effort to getting her to intake the maximum amount of fluid with the most calories suited to her condition. They were able to obtain a recipe for mixing the formula to 27 calories, which will work well for Ella at home. She has been tolerating the bolus feeds with no problem; this is great since it means we can spend less time on feeding sessions.

Ella had her first hearing test this morning. They placed 4 sensor leads on her head and a devise in her each ear, one at a time. I was curious how they conducted infant hearing tests. They liken it to an EEG, where it tracks the actual activity throughout the brain. They test it at various decibels to ensure proper hearing. They were able to tell us the results right away – – she passed her hearing tests in both ears! Since CDH babies inherently carry risks for hearing loss, she will need to be retested every 6 months to monitor her hearing.

The cardiologist came by to take a listen to Ella and explain the pulmonary hypertension. He told me that she has two conditions that are causing the pulmonary hypertension: Patent Foramen Ovale (PFO) and Patent Ductus Arteriosus (PDA). Also, he informed me that Ella will need to have an echocardiogram performed initially about 2 times per month. They will need to keep a close watch to maintain blood flow and oxygen levels and adjust her medicine as she gains weight. Also, if the patent ductus arteriosus (PDA) does not close on its own, she may need to have a corrective surgery for the heart defect(s) by the time she turns 1 year old.

Ella tried some oral feeding with the occupational therapist today and did not respond real well. It frustrated her and she got upset during the session with several crying spells. We will try again tomorrow; she may have just been too tired to try something so new. Either way, I was happy to see that even during her crying spells, she was maintaining her saturations in the 90s. Before, it took very little for her to lose it completely and down spiral into a mode of being completely air starved. But she is getting stronger and the combinations of medicines are helping her so much.

We are gathering our last minute items that we will need for the house, such as sterile water and syringes for medicine administration. Tomorrow, I will be picking up all her prescriptions. She will be taking Reglan, Bumex, Diamox and Sildenifil.

We will be discussing options for home oxygen solutions tomorrow. We hope to have a liquid oxygen system, because of the advantages of portability. However, we are still not sure if that is covered by insurance (versus a standard oxygen compressor) or if any of the home oxygen suppliers in this area even carry it.

Some of you have wondered how long Ella will remain on oxygen. As you have seen, many of these decisions are ultimately based on how Ella responds. Going off her history and what we know of her so far, there is a good chance that she will be on it for at least another year, if not longer. Keep in mind that going back to Denver is also going to delay her ability to wean off the oxygen support, due to the altitude.

The primary nurse practitioner came back today. She has been great and is trying her best to make sure all the details are buttoned up, so that we can be discharged sooner versus later. The latest word on discharge could be as early as Friday or as late as Monday. They do not discharge babies over the weekend, but we are pretty sure it will be one of those two days.

We would prefer Friday not only because it is sooner, but it would also give us the weekend to hang out with her and become accustomed to her care as new parents together. Either way, we are only a few days away from bringing home the Bun. We should have a final answer sometime tomorrow.

When I took Josh back to visit this evening with Ella, we decided to give her a bath. This has become her routine before going to bed for the night. This time, I let Daddy be more involved with the bath. He had a great time with Ella, as the pictures demonstrate.

Some of Ella’s biggest fans in the NICU have started to come by her bedside and say their well wishes over the past few days. Some nurses who only took care of her a few times, to those who took care of her many times. Tonight, she was giving lots and lots of smiles to Nurse Janet and Nurse Michelle who are part of her core nursing team. Also, Roger (who worked her ECMO pump way back in late July and August) came by to take a peek at her progress. One thing is for sure: Ella LOVES all the attention. She is going to miss all her friends in the NICU. It is all she has ever known.

We continue to be in awe of Ella and how far the Lord has brought her. She has been through so much and is such a strong little girl.

Thanks for the continued prayers for all three of us. We look forward to the next chapter of our journey and allowing you to continue along with us in heart and spirit.

The Laz Fam on January 23rd, 2008 at 10:54 pm #

It is so hard to find words! We are so overjoyed for all that God has done, and we claim with you, the victory for all He will do. Rest well ~ your lives are going to be so different soon! 🙂
Love you so much! KTJB

Pat & Bob Hadden on January 23rd, 2008 at 11:20 pm #

I’ve been almost afraid to say congratulations…my superstitious Grandmother in the back of my brain, knocking wood and spitting on the ground. But Bob and I send our love. We’re thinking of you and Ella.

The Rainey Family on January 23rd, 2008 at 11:34 pm #

Oh my goodness! We are so excited for you as you bring your precious little girl home with you! Praise the Lord!! Our prayers continue to be with you!!

Gloria & Red Jacobsen on January 23rd, 2008 at 11:43 pm #

What wonderful pictures of Ella,she is a darling. I just got back from 2 weeks out of town,what a joy to find the bun will be going home soon! Always prayer for your little Ella and for both of you.

Jennifer Lanning on January 24th, 2008 at 2:41 am #

I’m baby Roger’s (one of Ella’s roommates at NICU3) nana. What a wonderful record you’ve put together with so many pictures of your adorable baby. I look forward to reading about her continued progress after she’s been discharged. We have a site for Roger also, under carepages.com, the individual name is RogerCarepage. You’re in my prayers!

Joel Snyder on January 24th, 2008 at 3:07 am #

Ella, It sounds like you are making plans to take those baby steps and go home. I will pray that all your tests and medicine help you to go home soon. You look fantastic in your pictures and I can understand all the smiles that you are giving everyone. I will check on you later and see when you decide to head home with Mom and Dad. Love,Grandpa!!!!!!!!!!!!!!!!

Tammy on January 24th, 2008 at 3:34 am #

How exciting for all of you!!!! The pictures during bath time ssy it all! Best wishes to you all on your journey home. The lord is so awesome….awesome indeed!!!!!!!

Lizotte Family on January 24th, 2008 at 7:15 am #

What a doll… I’m so exciting. I will that this week will be smooth for all of you. Ilove that first picture.

aunt Marla on January 24th, 2008 at 7:37 am #

I’m not sure if I will see you again before you take Ella home. I spent the day sick in bed yesterday, it may be a sinus infection something I usally get about once year. Anyway, you can e-mail me about getting together at your house, so I can see “my girl”. She looks so great! For the past 3 months she has brightened my days, and I know that it is going to make going to work less enjoyable for awhile, but I am so happy for her and for you all, what a blessing in your life and so many others. Keep in touch!

Aunt Ginny on January 24th, 2008 at 7:43 am #

Happy 1/2 Birthday Ella! I called your cousin Deanna this morning to wish her Happy 1/2 Birthday. She is 10 1/2 today.
I love you, Aunt Ginny

Avery Kronz on January 24th, 2008 at 8:23 am #

God is so great! I am so Happy that cinderELLA has come so far. I love the pictures of her having a bath! She is so pretty. love, Avery Kronz

Charlotte Rehrig on January 24th, 2008 at 8:58 am #

Praise God from whom all blessings flow!

Lizotte Family on January 24th, 2008 at 9:32 am #

I gotta say again I love that first picture.

Auntie Shannon on January 24th, 2008 at 9:49 am #

Wahooo! I am so happy for you guys!
I can’t wait to meet sweet Ella in a few weeks. Hopefully I can give you guys a little break and help you guys with anything you need. I do laundry, clean, cooking (kind of), and I can hold her all day too! Tina, do you have a baby monitor? We have one we didn’t really use with the video. I also have a few more little items I will send or bring with me. Let me know if you need anything before you buy.



Grandma on January 24th, 2008 at 10:08 am #

OH Dear baby Ella
Grandma is comming soon! I am so thrilled for you and your Mom and Dad
I can hardly wait to get my hands on you.I just dont know how I will ever leave once I get there.
You are soooooooooo cute and you look so much like your Daddy. .I thank God for you Tina you are so amazing . You both will make wonderful Parents. Ella you are a GOD BLESSED little girl
see you soon Love and lots of kissess Grandma West

Kristen on January 24th, 2008 at 10:20 am #

May the Lord pour out His blessings on your precious family as you prepare the way for Ella to come home! Get out the hankies, it is a precious moment when you walk through those doors with your baby girl. So happy for you!

Eli Brown on January 24th, 2008 at 11:14 am #

I can’t believe the day is almost here. Ella looks excited. I will be praying that it will be a smooth adjustment.

stacey on January 24th, 2008 at 1:41 pm #

Great news! XOXO

Kelsey and Ben on January 24th, 2008 at 2:41 pm #

I’m getting very excited for you guysl! Ben is going to see Dr. Kays in Tallahassee on Monday, and we are looking for a cute, and slightly bald, reason to come into Gainesville. And I mean Ella, not Josh! 🙂 If you guys think you’ll still be there by then, anyways. Just let me know! Our appointment’s at 2:15pm on the 28th. Hooray for Ella!

Char and Jim Jordan on January 24th, 2008 at 5:22 pm #

We are so very happy for all of you and Dr. Kays too. What a wonderful blessing. Oh my goodness, the Lord does love this little family. We send our hearfelt Thanks to everyone in the NICU that cared for Ella,Josh and Tina. Thank you all so very much!
LOL Aunt Char and Jim

Sheila Par's great aunt on January 24th, 2008 at 6:53 pm #

What an answer to prayer. We are still praying and know that God is continuing to bless you.

Carl and Cathie Firestone on January 24th, 2008 at 8:25 pm #

Yea God! Yea Ella! Yea Dr. Kays and Staff! We are so excited for all 3 of you! Much Love, The Firestones

Laura Marold on January 24th, 2008 at 10:09 pm #

I am THRILLED!!!! I am also thrilled for you, too!!!! When I think of the whole journey (and I know it’s not over yet) it’s just so wonderful that Ella looks so happy!!!! Dreams do come true. Love, Laura M.

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