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

CPAP Status

Eleanor has been off of CPAP for 15 hours and is still doing well! Keep up the prayers, we have a great God who hears us.

Ellie is also up to full continous drip feeds via her new G-tube, so her IV will be coming out some time tonight.

May God continue to recieve glory for the good progress in Ellie.

Praise God

Ellie was doing so well weaning off of CPAP, that they are trying her off of it full time! This is the big test--let's pray she passes!

Second Thursday Update

(first update is below this one)



I just got back from a busy visit at the hospital. I was able to hold Ellie for a little while. She had a great period of being awake, moving around quite a bit. Here is the latest:

Feeding: Things are not going well with Ellie's feedings. They had been giving her bowlous feedings every three hours, but when they checked her residuals (leftovers), she had not digested it all. Because of this, they have started a continuous drip feed into her feeding tube. The doctors don't think it is anything to worry about for the time being, since she is just 48 hours out of surgery, as well as the fact that she was not using her stomach before surgery. The problem with her not tolerating her feedings is that she needs an IV for nutrition. She has really fragile veins (runs in the family), and it is difficult to get a good IV site. She has an IV in her skull right now :(

Breathing: A little better news on the breathing side of things. They have her on CPAP again. They are already talking about starting to wean her off of the CPAP and onto the humidification collar. So we are excited for things to move forward on that front at least.

We heard a "rumor" (thanks Sherri!) that our doctor is pretty confident that she will not need CPAP at home. We are very hopeful.

We witnessed her second trach change today, this time done by the nurses. It went really smoothly and did not seem to bother Ellie that much. We are confident that we will be able to handle her care.

Occupational Therapy: The therapist made splints for Ellie today. They are on her wrists and feet. They will help with her tendancy to have "wrist drop" and slight clubbing in her feet. She will wear them for a three hour on/three hour off schedule for the time being.

The therapist says that she thinks Ellie has pretty good tone in her arms and legs. She is concerned mostly with her facial muscles. She wants us to try to stimulate her cheek muscles, her tongue, and to try to get her to work on closing her mouth.

I think that is it for today. It was really busy so I will see if Adam remembers anything that I forgot :-)

Thursday Update

Ellie is still resting and recovering from surgery. She is still on vent settings while she recovers. Yesterday they started giving her very small amounts of milk and plan on increasing them if she tolerates them well.

We started our trach training yesterday. It was very interesting. We knew a lot of the basic information because we have seen the nurses do her care countless times already. Tomorrow we start more hands on training. The training will be at least five sessions long, lasting about 2 hours each.

We are starting to think about and prepare for Ellie coming home, though they tell us it could still be about 6 weeks. We have decided to set up a crib in the family room so that she will always be near during the day. It will also make it easier for the night nurse to have her own space while she is caring for Ellie and we are sleeping. We will need to come up with a way to store all the medical equipment and supplies. There will be monitors and suction machines as well as enough trach supplies to last a month.

There is a lot of paperwork involved to get Ellie home to us. There are a few programs that we will be enrolled in to help with the extra costs of a special needs child. In Kent County, there is a program called "Children's Special Health Care Services." It helps to pay for Ellie's equipment needs and also coordinate special ed programs like Early On and physical therapy. Ellie also qualifies for a type of Medicaid called "30 day medicaid." It kicks in when a child has been in the hospital for 30 days or more. It is supplementary insurance that covers any medical bills from the hospital stay that our private insurance wouldn't cover. We've been working with a hospital social worker to help fill out all the paperwork. The problem with all the paperwork and different agencies is that it takes time. We just can't wait to have our girl come home.

Surgery was successful!

Here is a picture of Eleanor after her surgery. The doctor says it went very well. They were able to do it lapriscopically and also were able to do a muscle biopsy for more testing. Ellie looks great without anything on her face. They think they might be able to start feeding her again tomorrow. She is on the vent for now, but we are hoping they will be able to quickly wean her off of it again.

Surgery Today

The feeding tube surgery today is at 11:30 am.

A Tour of the Ellie's Room

I thought it would be nice to show you where Ellie is living.


Ellie lives in a room with 7 other babies. There are 4 along each wall. Here is the view of her side of the room. She has been living with the two boys along the back wall since she arrived at DeVos. We have gotten to know the babies quite well, but hardly ever see the parents. We have different visiting schedules I guess.


Here is Ellie's area of the room. Believe it or not, it feels like home to us now. You can see her crib, moniters, the chair that we hold her in, and all of her supplies.


Here is a picture of Ellie connected to the CPAP vent.


Here is Ellie right after I shocked her with the flash from the camera. Anything to get her to open her eyes! She is hooked up to the humidification collar in this picture-breathing room air on her own!

This Week
This week will be a busy one for us. Today the surgeons will come to explain the G-tube surgery and get our consent. Tuesday is the surgery. Then Ellie will be recovering. We hope that as soon as she is feeling a little better they will quickly wean her off of the vent.

This week we also start our trach care training. They will teach us to suction out her trach, change the trach ties and dressing, and eventually how to change out the trach itself.

We are so thankful for the progress that Ellie has made the last week and can't wait to see what she will do next!

peace,
Emily

Look mom no vent!

This morning Emily called the hospital to check in on Ellie and see how she was doing. Our nurse told Emily that they were going to try Ellie off of CPAP and see how she would handle it. I rushed over to the hospital to be there while she was off of the vent. When I got there she had already been taken off of CPAP and was handling the change very well! I held her for about an hour and a half and watched her vitals stay within the normal range. What a blessing from God!

The plan for now is that they will try her off of CPAP for three hours at a time and then check her blood gas. Blood gas is a measurement of oxygen and carbon dioxide levels in her blood and reveals how well she is handling the change. If her levels are good they will continue to wean her off of CPAP.

During the three hour period off of the vent Ellie has a collar around her neck that provides humidification to the air she is breathing.

When Ellie has her Gtube/Nissen surgery next Tuesday, they will have to go two steps back and have her on assisted breathing with the vent. This is because she will be under general anesthesia during the procedure. After the procedure she will be weaned off of support during her week of recovery.

Keep praying that Ellie will be able to breathe on her own with as little equipment as possible.

We give thanks to God for this positive step forward.

One Month

Trips to and from the hospital . . . 97
Pumping sessions . . . 310
Tears and prayers . . . countless

Eleanor Rose . . . PRICELESS





Well, we weren't planning on getting a minivan before Eleanor was born. But, plans change. With a child that has a trach, someone trained in her care needs to sit next to her in the car. So we need more seating. We also need more space for medical equipment, like a Kid Kart! (I like the dusty plum, don't you? )

So, here is the new van. It is a 2003 Honda Odyssey. We are very happy with it. God provides for our every need!

Thursday Update

It was a busy day today at the hospital.

Testing: Praise God that the test for Spinal Muscular Atrophy came back negative today. This was one of the dreaded tests that we were praying was negative. There is one more outstanding test for Myotonic Dystrophy that we are praying comes back negative.

Trach: Ellie had her first trach change (of many to come) today. The doctor wrote in her chart that her trach site looks "excellent." The best part was that now Adam and I can hold her for extended periods of time again. Yay! She is doing well breathing with CPAP. They will not attempt to have her breathe on her own until she has recovered from her G-tube surgery next week. The doctor said today that her lungs sound very good and seemed optomistic that she will be able to breathe on her own. Keep praying that she will not need CPAP when she comes home.

Other random info: The nutritionist came by and said that Ellie is growing very normally, following the normal growth chart curve. She said she will come to talk to me about how much I'm supposed to feed her when we go home. This is all new to me, as I'm used to "one side, or two?" measurements.

Our doctor called our insurance today, and it sounds like I will be approved for long term rental of the hospital-grade breastpump. This will save us a lot of money, and from what I hear our insurance does not usually approve this. So that is good news too.

The physical therapist has shown us a few range of motion exercises to do with Ellie to keep her from getting stiff. Starting tomorrow he is going to do more evaluation and more intensive therapy.

Discharge info: I talked to the discharge nurse yesterday. The are still acting like it will be 4-6 weeks before she will be able to come home. They have started looking into home nursing care for us. We will start our trach care training next week. Pray that things move forward quickly.

We are hoping and praying for a very special Thanksgiving with Ellie at home!

Visitors Welcome

A lot of people have mentioned a desire to come visit us while we are at the hospital. We are there most evenings from about 6:30 to 8:30 and would love to visit with you. Please call us first, and make sure you and no one in your house is feeling sick.

See you soon :-)

Wednesday Update

Just wanted to let you all know that Ellie's G-tube surgery is scheduled for Tuesday, Oct 16.

They have taken her off of ventilator support and have her on CPAP. CPAP is basically positive pressure; it doesn't actually breathe for her. So this is a good step. We are still praying hard that she will be able to breathe through the trach without the CPAP support.

Her primary nurse is back working today after 2 days off. She told me that Ellie seems even more responsive now that she was 2 days ago! Praise God for progress!

Thank you everyone for your messages of support and prayers. We are doing well.

A Wonderful Sunday

I have learned that I get more responses if I post a picture of our beautiful daughter first, so here ya go:





We had a great day yesterday. We started off by visiting Ellie early in the morning before church. I was excited to see her dressed in a gorgeous brown kimono shirt that Grandma Vedra bought for her. She was resting peacefully, and it was nice to start the day visiting her.

It was great to be at church and worship our covenant God. We are just amazed at the warmth and fellowship we receive from our church family. They have made it clear that they are here to support us in whatever we need, whether it be with food, prayers, money, or electrical work on the house. We can not express how loved and encouraged we feel.

Adam expressed to me after returning from the evening service just how sustained he feels after spending time at church again. He just felt so uplifted, and like no matter what happens, God will provide.

After evening church, we headed off to visit Ellie again (thanks mom and dad!) We had such a good visit! She was opening her eyes a bit and moving around a lot. Our nurse was showing us a lot about trach care, and when she suctioned Ellie, we think we saw her cough!! I still can't believe it, which is why I say "think" even though the nurse was pretty sure it was a cough. I know I should not be surprised at God's miracles, but it is still unbelievable.

Thanksgiving:

Our awesome parents who have been helping us out in so many ways

Friends who bring meals and watch the boys

Successful tracheostomy surgery

The support of our church family and believers around the world

Prayer Requests for this week:

That Ellie would continue to amaze us in her little ways of progress

That Ellie would be able to breathe through her trach without a vent

The upcoming g-tube surgery

Thank you everyone for your prayers! They are working, and we can feel it.

Saturday Update

Eleanor is healing well from surgery and resting peacefully. She is starting to gain more weight again and is 7 lb 6 oz. They are talking about the nissen g-tube surgery taking place next week.

We all think she looks like Noah did as a baby. We just love to kiss those cheeks!

Surgery was successful!

Eleanor went in for her tracheotomy at around 11:45 this morning. She was in there for about 45 minutes. The doctor tells us it went quite well.

We were able to see Ellie back in her bed at around 1 pm. She was resting peacefully, and we were able to see her entire face. She is now coming off the anesthesia and will be resting and healing. They will not try her off the vent for a few days we don't think.

Praise God for a successful surgery!


in her bed before surgery


recovering with her new trach


Ellie's beautiful face

Wednesday Update

The meeting today was pretty brutal.

Last week, we were told by the Ear/Nose/Throat doctor that he had not seen tracheomalasia as bad as Eleanor's in his 20 years of practice. When he stuck the scope down her throat, she did not even muster a cough or gag. He had never seen that lack of response. So, we had heard that bad news from him, but were hoping for something more encouraging from the Neurologist.

Unfortunately, she was not the bearer of good news either. She told us whatever Ellie has is very severe. If she has one of the genetic disorders that they are testing for, she would have the most severe case they had ever seen. If she does not have one of those disorders, her future does not look any brighter. Basically, the neurologist thinks that there is something wrong with Ellie's brainstem. They did not see anything structurally wrong in the MRI, but they are not able to see the little nuclei that travel down the brainstem. She thinks that is where something is wrong. Impulses are not getting places like they should.

The "good" news is that she thinks it is probably not one of the genetic disorders causing this. Ellie's chromosomes that they tested in her blood were okay as far as they could see. We also have no family history of genetic problems, and her case is missing some of those genetic markers. This does not mean it couldn't be a genetic thing, but the Neurologist is leaning more towards Ellie's issues being a result of some sort of episode that happened in the womb. It could have been a stroke that occured very early in the pregnancy before the brain was developed. It could also just be a "fluke" where her development took a wrong turn sometime in utero. Again, this is all just speculation at this point. It would not change Ellie's situation, but it would be good news as far as the future of our family: whether we could have more children, whether the boys would be affected, whether they could have children that were affected, etc.

The bad news is that Ellie's future is very, very bleak. She will probably not develop abilities beyond those she has right now. She will be very suseptable to pneumonia, and often kids like her are in and out of the hospital every six weeks with illness. Each time they recover, it takes a little of their strength with it. She might develop chronic lung disease, where the lungs build up scar tissue from so much illness. Ellie will also likely have trouble growing normally. In order for bones to develop correctly, they need to have gravity and weight put on them. She will likely lose bone density and be suseptable to multiple breaks and fractures. She might be uncomfortable with stiff joints and muscles.

Due to this picture of her future, the doctors gave us the option of letting our precious daughter pass on without all this suffering. It is hard to believe we are even in the position where that would be an option. The doctors tell us Ellie's situation is kind of a gray area, where they can see reasons we would want to let her go, and also reasons to pursue treatment. They told us about the different hospice options that are available in our situation. It is so sad to even imagine.

We are choosing to pursue life for Ellie. We know that God has a plan to bring himself glory through her, and that she is made in his image. We must praise God for this covenant child that he has given us--our job is now to love her and take care of her.

Our plan right now is to get Ellie home and enjoy her for as long as God gives us. The first step for this to happen is for Ellie to have a tracheotomy. The ENT doctor providentially was on the NICU floor when we told the doctors our decision, and he immediately came to our conference room to tell us that he might be able to do the surgery tomorrow morning! He is going to try to squeeze her in around noon tomorrow. Once Ellie's trach is healed, they will move on to the nissen G-tube surgery. This could be about a week after the tracheotomy. Once she is healed from both surgeries, we can start talking about coming home. If Ellie is able to have the tracheotomy and breathe on her own, the road to coming home is much shorter. If she has the trach but still needs to receive some breathing assistance (CPAP), then the road will be much longer. Our house would need to be prepared to provide that sort of support, and that could take 6-8 weeks after the surgery. So we are praying that she will be able to breathe on her own with the trach.

I cannot express the peace that Adam and I have following this meeting. It is irrational how peaceful we feel with our decision and with the future of our daughter. It truly "passes all understanding." When we got back to her bedside, Ellie immediately opened her eyes to see us, and her pupils even followed me and interacted with me for a little while. What a blessing! We feel so free now of all the questions of diagnosis and future, and just want to enjoy her and love her for who God made her to be.

Prayer Requests:

That the tracheotomy would be able to happen tomorrow morning. That it would go well and Ellie would tolerate surgery.

That Ellie would be able to breathe on her own with the trach. This will bring her home to us much more quickly, not to mention make her easier to hold, cuddle, kiss, etc.

That Adam and I continue to have peace with our decisions about Ellie's care and her future

For Ellie's future-that she would bring glory to God and be a blessing to everyone she meets. That we may enjoy her for however long God gives us.


Ellie opens her eyes for us


Ellie holds dad's hand

Tuesday Update

There are no changes with Eleanor today.

We have set up a meeting with the Neurologist and our NICU doctor for tomorrow at 1:30 pm. There is a chance they will have some test results by then. My prayer is that all the tests will come back negative. I would rather Ellie be undiagnosed than she have the diseases they are testing her for at this point. None of them are good, and I would rather we have the question of not knowing her potential than to have the bleak future that comes with these diseases.

Our plan is to tell them to go ahead with setting up the trach surgery at the meeting tomorrow. We must move forward even though the surgeries sound scary.

peace and love--
Emily