Ellie's first tub bath

Last night, we gave Ellie her first bath in a tub. We were prepared for her to hate it, but to the contrary, she loved it! She was really relaxed in the bath and was nice and clean afterward. Her g-tube button can go under the water, her trach obviously can not.

My beautiful sister Julie holding Ellie

Monday Update: More good news

Ellie's new blanket. Thanks Brenna and Braelynn!




We continue to be amazed at the works of God. We had our "care conference" at the hospital today. Things are really moving forward with Ellie.

Breathing: The doctors are quite impressed with Ellie's ability to breathe without any support. It will help her remain strong if she ends up getting sick. She breathes through the "artificial nose" during the day, and uses the humidification collar at night.

Feeding: Ellie is now being fed by gavauge every three hours. She is at full feeds of about 2.5 ounces. This is what her feedings look like now:

Diagnosis: We received the test results for myotonic dystrophy today: they are negative! This is especially significant because it rules out the main diseases that are degenerative, where she would get worse. Now we can have hope that Ellie will remain in the state she is in, or even get better.

The skin biopsy and muscle biopsy were sent to Mayo for testing. It will probably take a while before they are able to tell us anything.

Home: The have a target date for Ellie's discharge of Nov 7 or 8. That's the end of next week! We can't wait. The next week will be quite busy as we get the house ready, get trained on our home equipment, and various other things that need to happen before she is home.

Prayers:

That Ellie continues to improve in her muscle strength.

That things would go smoothly in preparation for Ellie's homecoming.

That we would all be able to settle into home life without too much trouble.

Thank you all for your prayers. Please join us in praising God for all of his care and blessings.

Thursday Update

Ellie is now trying out an HME (artificial nose) on her trach. She is doing awesome! They have her using it for 6 hours during the day.

The HME fits onto the end of the trach tube and collects exhaled moisture to humidify the next breath. She will still use the bulky humidity collar at night. More information on humidity and trachs can be found here.

Here is Ellie with the HME on:


So much easier to hold and cuddle her:

Feedings: The doctors have been steadily decreasing the amount of time they have her feeds spaced over. She is now getting her entire feeding over the course of 30 minutes. Next step: bowlous feedings! She is doing a fabulous job of digesting the milk, and has little to no residual (leftovers) after she is done digesting the feeding.

Home: God is continuing to answer prayers! They have found a nursing company that is willing to work for Ellie, and the discharge nurse is now saying we should be home in two weeks! We hardly dare say it out loud, but it continues to look like we will be home sooner than we thought.

Ellie has been in the hospital for 6 weeks. It has been an amazing journey. We have truly experienced the valley, the depths of sadness and desperation, but, by the grace of God, we have come out on the other side and can proclaim: "How great is our God!" We could not make it without the support of your prayers and encouragement, from both friends and those we do not know, though you are all friends in Christ. We know this is really just the beginning of a lifelong journey, but now we can rest assured that anything is possible with God, and we are not afraid.

Our love and peace to all--

Emily

Babywearing in the NICU... plus video of Ellie!

I've been dying to try Ellie in one of my carriers, so today when my friend Tessa came to the NICU with me, we just had to try it out. I think it went great--and was much more comfortable for my arms!



Here is a video of Ellie during one of her awake periods. Enjoy!

Answers to Prayer

Eleanor has been off of CPAP for two and half days without incident! Translation: God is working and answering prayer.

Eleanor is also doing well on her feedings. Today her feeding time has been compressed from a continous drip over three hours to two hours drip and one hour off. Translation: God is working and answering prayer.

Emily and I are so pleased with the progress over the past few days and are thankful to God for his tender mercies and sustaining comfort.

Prayer Requests:

1. We haven't heard back on the genetics test for Myotonic Dystrophy yet. It has been out for over four weeks and was supposed to be back in two weeks. Our prayer is that this test would come back negative, for the prognosis is generally poor.

2. We would like Eleanor to come home as soon as possible. This is not only because we want to love her and cuddle with her all the time, but for her own health and wellness. As winter approaches, the risk for catching all kind of illnesses increases. Ellie's risk is doubled simply because of her breathing issues. And beleive it or not a hospital is not the place to be at this time of year. Eleanor is safer at home with our germs, not everyone elses. ;)

Eleanor may be coming home sooner than the projected six to eight weeks. A lot of this depends on whether skilled in home nursing care can be lined up. This process can take a lot of time, and can be frustrating. The staff at Devos Children's have been working hard to line this up for us.

So we rest in the very capable hands of our Lord and Savior Jesus Christ.

For His glory.

Grandma holds Ellie