Posted (Tina) in All Posts on February-26-2008

Ella had a great night of sleep, but for some reason, was fussy most of the morning. Then she realized that it was almost time to go see Dr. Kays, so she opted to behave for a bit (she always puts on her best for him).

Our appointment time was good. We went ahead and changed out Ella’s g-tube for a smaller one. Actually, Josh went ahead and changed out the tube, with the nurse practitioner supervising. Yikes – – that is not something for me, so I am glad that Josh doesn’t mind doing it!

The Mic-Key g-tube has a balloon inside that is inflated which keeps it in place. Before, it was inflated with 5ccs, so today we decided to inflate it to only 3ccs.

If you remember, the radiology test recently showed that the balloon part of the g-tube might have been occluding the antrum (lower portion of the stomach closest to the pylorus). Since her feeding issues seem volume related, we are hoping that the smaller tube along with the smaller balloon will give more room in her belly and will therefore have a positive effect for her feeding issues. Only time will tell.

Also, the nurse practitioner had to burn off the granulation tissue. Thankfully, this is not painful for Ella. I think it is more painful to watch!

We are scheduled to see Dr. Kays next week. If the feeding issues do not improve, we are considering an increase in her current medication, Reglan. Reglan increases muscle contractions in upper digestive tract. This speeds up the rate at which the stomach empties into the intestines. Based on her weight, she could take more of it.

The focus is on the feeding issues so much not only because of the inconvenience and discomfort to Ella, but also because she weighed in at the same weight, yet 2 weeks has passed. It is common for CDH babies to have a tough time with weight gain, so I should expect this challenge.

When I thought about it today, it makes sense because Ella is supposed to take 550ccs each day and we have had a tough time meeting that requirement lately with all her feeding issues. Also, she is only on 24 calorie food so the density might need to be increased. But right now, we are trying to identify what is causing discomfort and retching before we look to change the food in any way.

This afternoon when we returned from the doctor, Ella was in a great mood. She was so smiley! It was nice to see. Who knows, maybe the change in g-tube really did make a difference to her. Again, only time will tell.

Tonight there were severe thunderstorms in central Florida and a tornado watch. When we were hanging out, all of a sudden the electricity went out. The drill that Josh went through the first night that Ella was ever home with us (where Josh thought there was an emergency and Ella just needed her diaper changed), paid off. Immediately, Josh jumped up from his chair where he was eating dinner, and ran into the bedroom to grab the portable oxygen tank. He successfully transitioned Ella’s oxygen within a matter of seconds. Thank goodness!

Seeing Ella in such a great mood makes me long for the days when Ella is stronger. When she is feeling good, she is just so happy. We just need to keep holding on to the hope that she will grow and get strong.

One last thing to share: God provided a tremendous blessing while we were exiting the office of Dr. Kays. Another CDH patient was there for her check-up. She is 9 years old and she looked great with her ponytail and big smile. We spoke with the family briefly and it was so great to see this girl grown up. You could barely notice the scars across her neck from ECMO.

Also, it was neat to experience a 9 year old CDH survivor that was looking at Ella with eyes of compassion and sympathy. It was as if there was an instant connection since they had both survived the same birth defect and had matching scars on their necks.

Immediately, Josh got teary-eyed. We looked at each other and knew that it was a specific arrangement by Him to be blessed.

Galatians 6:9
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.

Roberts Family on February 27th, 2008 at 12:40 am #

I thought of you guys tonight when I heard about the big power outage. Glad to hear you managed well. I read your blog everyday and pray for Ella every night here in the other corner of the country (WA state). May the Lord continue to strengthen you and reward your faith in Him. I pray especially that the food issues will be solved soon. Thank you for sharing your faith and journey with Ella with us.

tamara tessmer on February 27th, 2008 at 6:39 am #

That is so cool that you saw that little nine year old. It is mind blowing sometimes to be in a situation that is sooo totally God. He really does take care of His children. Ella looks very happy today. WHy wouldn’t she be. She has an awesome God who whispers softly about His love for her and she has two of the most devoted and faithful parents I have ever seen. The two of you are an encouragement to me daily. Thank you again for sharing this part of your life. Talk to you soon.


The Brittain Family on February 27th, 2008 at 7:06 am #

May the Lord continue to give you strength and perseverance as you face the feeding issues. We’re thankful she hasn’t lost weight. We’ve also been praying for her BUN number and fluid retention issues. Are they looking good? Step by step, we trust in Him. He is good ALL the time. It is so good to rest in Him. Keep up the good work!

Joel Snyder on February 27th, 2008 at 7:32 am #

Ella, What great news that you are feeling better and put on a good show for your boyfriend Dr.Kays. I heard about the weather and I am sure glad that your “Super Dad” and Grandma were there to help with the power loss. Tell your Mom that it won’t be long before you are doing more than baby steps and she will be amazed. I am praying that you will get over the feeding issues and gain strength. Josh and Tina you are still my heroes and I can’t believe the great job you two are doing. I will catch up with you later. Love,Grandpa!!!!!!!!!!

Williamsburg on February 27th, 2008 at 8:03 am #

My goodness, Miss Ella – I’ve said it before but just have to say it again – if cuteness were curative you’d be not only completely healed but possibly sprouting wings like the cherub you are =) So glad you found smiles for your visits and that your mom and dad were so blessed by an encounter with another miracle. What an awesome team you all are. Praising God every day for your journey while praying for continued progress. All our love. XOXOXO

Matt, Abby, Austin & Caed on February 27th, 2008 at 8:23 am #

That is really cool that you got to meet that young girl. Definitely a God-incidence (as my Mom-in-Law says). I’m sure that was encouraging for you. Tina and Josh, whether you realize it or not, you both are a source of encouragement to others everywhere you go. Your faith in God throughout all of this is wonderful to see and evident every time we get to talk with you. Abby and I are so blessed to know you. We continue to pray for you three daily and lift you up to God for rest, peace, healing and joy in the Lord. The Brittain Family hit the nail on the head…He is good ALL the time.
You, who have shown me great and severe troubles, Shall revive me again, And bring me up again from the depths of the earth. You shall increase my greatlness, And comfort me on every side.
Psalm 71:20-21

Char and Jim Jordan on February 27th, 2008 at 10:14 am #

How “coincidental”. I think not. She is such a trooper. So cute. You dress her to the Tea. You always did have good fashion sense Tina, just like your mom. Say HI for us. LOL Aunt Char

sherry martinez on February 27th, 2008 at 10:26 am #

Hi Ive been following your story as I am a mother about to have a baby boy with cdh his due date is may 12th your story gives me great hope. My son’s name is Cayden. I hope all of Ella’s follow up visits go well. I will keep you in our prayers as well as with my Caydens.

the Lizotte family on February 27th, 2008 at 11:58 am #

I’m with Grandpa Joel, you guys are Heroes! I so glad you had the oppurtunity to meet a growing child with CDH. I think it’s exactly what you needed. Things are hard but they will get easier. Just think about it, 7 months ago Ella needed ECMO to survive the night. Keep your head up high!

Carol Ellis on February 27th, 2008 at 1:31 pm #

Just wanted to know that Ella and your family were on my heart. I am praying for her health. She touched my heart the moment I saw her at Dr. Kathy’s. Love Always. Alliance Peds Office Manager, Carol

Joan and Steve Odell on February 27th, 2008 at 2:03 pm #

Such good news for all of us. The weather is moving into its spring mode and we are experiencing the same issues. Last time we lost power it was for three weeks – yuk – glad we don’t have little ones to worry about. You guys are doing great – take care of each other and Lord Bless – Steve and Joan

Martie Buzzard on March 1st, 2008 at 8:28 am #

Dear Josh, Tina and Ella,
We had lunch and a nice visit with Lynn, Herb and Kathleen, Bob Hadden and Joanne yesterday. Charlie and I have been in Palm Springs for about 10 days and were so glad we could get together with family while here.

We stopped first at Lynn’s home and were so happy to see all the beautiful granddaughters. And hearing of your journey to parenthood is such a gift. Ella is truly a special and unique blessing and I know that the sacrifices you have made have brought countless hours of joy and challenges that you never would have dreamed possible.

We leave tomorrow and I’ll stay in touch with Ella’s progress. Also, Katie has converted our old movies onto DVD and there are several segments with Grandma Hadden and other family members from way back. Will send them to you when I get them edited (there are too many for you to have to look through to get to the good part).

Thanks for sharing your life with so many people. I’ll pray for Ella’s swift and thorough progress.


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