Posted (Tina) in All Posts on January-22-2008

Today was a full day for Ella. Surprisingly, she was up most of the day and only took 3 short 30 minute power naps. The rest of the time she was awake, bright-eyed, happy and smiling. We had a great time together.

The occupational therapist came to do a session with Ella. She showed me some developmental exercises that I can do with the Bun each day to help her. As you can see from the pictures, we tried the Baby Bjorn to see how she would like it and whether or not it would provide enough trunk support. She loved it! This will be a great thing to use at home, so I can have my arms free.

We are running out of breast milk and may be able to get another 24 hours worth before my frozen supply runs out. So today at 3pm, they decided to start mixing it 50/50 with formula (Similac, 24 calorie). They are still trying to determine which formula we will use at home.

All CDH babies under the care of Dr. Kays have a lower fluid intake. With Ella’s fluid issues, she is even more sensitive. So while she is in the hospital, they try to enhance and add more calories to the amount of limited fluid she intakes each day (e.g. she was up to 30 calorie Portagen). Unfortunately, they do not carry 30 calorie formulas over the counter and although you could try to mix it a certain way at home to make it 30 calories, the formula companies do not recommend it (gives too much of other nutrients/ingredients). So, this is something they will be trying to figure out over the coming days.

Although we do not anticipate any issues, please pray that Ella will not have any issues switching to the formula exclusively. Also, that the doctors will come up with a plan to get her enough calories so she can start to gain weight again.

Last night, she weighed in at 10 pounds, 7 ounces, which is much smaller than she should be at this age. She has been steadily losing weight and getting back to her “dry weight” (more of a true weight prior to her diuretic fluid issues in the past few weeks). But, we need her to gain weight and that will not happen without more calories.

Another change with feeding today is the method of feeding. Currently, she is on a continuous feed via a pump for 8 hours at night (this will stay the same when we are at home) and then she eats five times per day every three hours. When we feed during the day, we vent her g-tube for 10 minutes, feed via a pump over 1 hour, vent her g-tube for 30 minutes after the feed. She eats every 3 hours, so you only end up having an hour and 20 minutes where she is not “hooked up” to any feeding devices.

They want to try bolus feeding to provide us with more flexibility and lessen the time that Ella is attached to tubes. Bolus feeds are where you simply pour the entire amount into a syringe and it floats into her g-tube and belly via gravity; takes maybe 5-10 minutes. In the past when they tried the bolus feeding, Ella would retch a lot and not tolerate it well.

Today, we tried venting 10 minutes prior, a bolus feed, and venting 30 minutes afterwards for the 3pm and 6pm feed and Ella seemed fine. We really hope this works over the next couple of days, as it will provide more flexibility with her eating schedule.

Ella had her abdominal ultrasound this morning. By 6:45pm tonight, the official results came back and it does not appear to be any clotting in the area where the CVL was located – – praise God! Therefore, they decided to discontinue the low molecular heparin therapy. Yippee – – no more shots in her legs each day. Poor little girl!

The primary nurse practitioner that oversees Ella will be returning tomorrow. We are anxious to hear about her thoughts and the plan for discharge. We know it will be soon, but hopefully she can paint a clearer picture around the details of when that might be happening.

In the meantime, we are enjoying the time with Ella. It is so refreshing to see her relaxed and not laboring so hard just to breathe. I think that is why she has gained more energy and endurance over the past few days.

We continue to trust in Him for the timing of discharge for the hospital and ask for your continued prayers for our baby girl. We want to see her continue to get stronger and healthier each day. Also, please pray for rest and peace for us as we enter a new chapter of our journey.

Psalm 33:22
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.

Roberts Family on January 22nd, 2008 at 8:52 pm #

It’s wonderful to see Ella so happy and getting close to discharge. How long will she need the nose canulas/oxygen? Just curious :).

Thanking the Lord for Ella’s improvement.

Lisa T on January 22nd, 2008 at 8:55 pm #

Look at that face! It’s so nice to read about Ella’s most recent accomplishments; what amazing progress she is making!

Steven and Terri Trainer on January 22nd, 2008 at 9:07 pm #

What a cutie!! We’re so glad to see her feeling so much better! GREAT photos.
xxoo – T

tamara tessmer on January 22nd, 2008 at 9:07 pm #

Yeah Ella!! Can’t wait to see you “no strings attached”
Love ya

Laura Arneson (Adrienne' friend) on January 22nd, 2008 at 9:34 pm #

I know this may sound a bit wacky, but what about donor breast milk? I have a friend from Greeley that did this as she was a grand producer. Something to think about…Laura

Laura Arneson (Adrienne' friend) on January 22nd, 2008 at 9:37 pm #

I went ahead and got the web site for the milk bank in tada…Denver!
Hope this gives some good information. Blessings

Lisa Correia on January 22nd, 2008 at 9:52 pm #

God Bless Ella, the beautiful blue eyed girl. You better get a BIG stick Josh. You’re gonna need it!!

Joel Snyder on January 23rd, 2008 at 1:42 am #

Ella, I am so happy to see you and your Mom having so much fun together. I wlll be praying that all the baby steps and details will work out in the next few days so you can go home. Tina and Josh I am hoping that you are both getting your rest. I Love and miss you. Grandpa!!!!!!!!!!!!!

The Brittain Family on January 23rd, 2008 at 6:08 am #

Yay! Come on, little tummy, you can do those bolus feeds : ) We can relate to feeling concern over weight gain, but the good news is that she has managed to double her birth weight in 6 months which is pretty incredible considering several major surgeries! She’s doing great and we’ll pray for wisdom as you continue to fine-tune her feeding program : ) We’ll keep trusting that the Lord will keep providing answers for all of Ella’s questions! Enjoy her. We’re thrilled she’s feeling so wonderful.

Matt, Abby, Austin & Caed on January 23rd, 2008 at 6:48 am #

These last several days have been really encouraging! I know once ya’ll get her home there will be a lot of adjustments to make. The Lord has carried you through to this point, just continue to keep your eyes on Him. Abby and I are rejoicing with both of you over Ella’s progress and we’ll pray for continued growth and healing. Also for peace, rest and wisdom for you two as you take over more and more of her care. If we can do anything at all to help (bring food, sweep the porch, bring stamps, hug on you) please let us know. We’re here for you.

Lizotte Family on January 23rd, 2008 at 6:53 am #

Ella is KICKING Butt! I’m so excited to hear all of these great changes. The pictures are so telling, her skin tone shows how well she is doing. You have a beautiful angel in your hands.

Rachel & Ava on January 23rd, 2008 at 8:41 am #

don’t worry about the mixture of the 30 cal formula, Ava has chd and we had to mix her Goodstart supreme 28 scoops to 32 oz of water, we used this for about 11months and she had no problems om it. I’m so glad to see Ella doing well and am excited at the prospect of her getting out side of the hospital for the first time. I know how scary and exciting it can be all at the same time. My best suggestion is to get an at home nurse who specializes in CDH, we had a nurse for about a yr after ava left the hospital and she was God sent. even though almost a yr has past since she was no longer needed as our nurse she remains a big part of our family and is basically a grandmother to Ava, she calls her Lala. We pray for baby Ella everynight, ava is only 2 1/2, but when she says her prays with me it’s like she is already grown, she always says at the of her prayers Night Night Ella, it always makes me smile.

John & Estela Williams on January 23rd, 2008 at 9:43 am #

What awesome photos… you two girls look beautiful. It is awesome to see Ella doing and feeling so good… praise God. I pray that you are planning to obtain assitance once Ella comes home as it is a full time job in itself. Love you guys!

Marge (Indiana friend of Keith & Liz Mueller - Chris' parents) on January 23rd, 2008 at 10:36 am #

What a beautiful baby Ella is….a real cutie and I love her sweet smile..she makes my day! Praise God for his goodness and mercy and also thank Him for the technology that has allowed us all to know Ella and be a part of your journey. May He bless you all with peace, rest and strength as progess continues for Ella’s trip home home from the hospital.

Alissa Ford on January 23rd, 2008 at 2:29 pm #

I have followed Ella’s story from very early on and would love to help any way I can. Not only have I lived the life as a Mom of a a child with special needs, but I work for a Children’s Hospital as Parent Support.
You should ask Ella’s doctor about Neocate Jr. it is 30 cal.,or Vital Jr. which is 30 cal. My daughter has a GTube and had severe feeding intolerance before trying those formulas. She was also fluid restricted. You should also ask the discharge planner about getting you set up with a DME company to help supply these formulas. Because Ella might need these specailized formulas, and is fed via GTube you should be able to get your insurance to pay for the formulas becauce they will be considered a medical necessity because they are a tube feeding. I have been where you are and if you need a good listening ear who really understands please feel free to contact me via email, [email protected].

Char and Jim Jordan on January 23rd, 2008 at 5:00 pm #

T & J The last few blogs have no picures on them. We got one out of 3. We are not complaining much. We just love to see that relaxed face. That beautiful baby. Since we can’t come to Florida, boy we wait to see those pictures. Marc was really little and he really blossomed on Similac. I hope it works for her. LOL Aunt Char and Jim

The Chambers' Family on January 23rd, 2008 at 8:18 pm #

How amazing it is to see all the connections and people that are able to give advice and/or have been where you are… Who knew you could have insurance pay for formula and have a CDH nurse? God is amazing.

I love the smiley Ella picture at the bottom. She is adorable!

Brantley Family on January 23rd, 2008 at 9:11 pm #

Ella looks so good! We can’t wait to see her out of the hospital. Hopefully she will be out sooner than later. I know you two are anxious and we will continue to pray for Ella’s health.

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