vedrafamily

Christmas Letter 2011

2012-01-07T13:40:00.000-08:00

Okay, I wrote this Christmas letter with the intention of mailing it out, but never got around to printing it out and mailing it . So, here is the next best thing!

Dear Friends,
Merry Christmas and Happy New Year!

We are excited to share the details of our last year. We would like to apologize for discontinuing the blog updates, but as you will see from this letter, our lives may have gotten busier, but really we are not very newsworthy anymore. And that is a good thing, in our opinion!

2011 began with big news regarding Adam’s job at Calvin College. He was promoted to a new position as Information Security Officer, an exciting prospect providing him with new challenges and opportunities for growth. Due to his new position, Adam traveled to conferences out of town, first in January and then also in October. The rest of us handled these leaves remarkably well, due to the extra nursing help for Ellie. Adam is doing very well in his new position, and we are all super proud of him.

The boys have done a lot of growing this year as well. It was an exciting fall as the boys started school at a small charter school in town. They have adapted incredibly well and love the routine and activity so much. Noah is in third grade and Seth is in first. They had great reports both academically and based on their character at conferences. We are so proud of them! They have also been taking swim lessons and are already much better swimmers than I am (not hard to do!).

I am excited to report that Ellie has had a very non-eventful year. She has had her share of colds, pneumonia, and infections, but what is great is that she has handled them all well. She has not been admitted to the hospital since she turned one, and has gone the whole year without oral steroids for her lungs. For a special girl like her, that is quite a feat! Ellie is growing well and blossoming in her interaction with other people. We enjoy her beautiful smiles and warm personality.

As for Emily, this has also been a big year for me. First of all sending the boys off to school was a big change and a big decision for us all. But I was able to see the Lord’s confirmation very quickly in how well we all adjusted. Having the boys in school has also opened up new opportunities for me, both in service and in work. I was able to start working at church for a few hours a week helping the pastors. I also started attending Bible Study Fellowship this year and am doing more volunteering at church.

Some other exciting events for our family this year include the first vacation away from all the kids in ten years for Adam and me. We spent five days in Florida relaxing and reconnecting with one another. Then in May, our family was granted a wish through Make a Wish and we received a beautiful camper. We really broke it in this summer, spending about five weeks total camping at different places. Our biggest trip was a tour through the Michigan Upper Peninsula that went extremely well, and the whole family enjoyed the time away. We look forward to more camping adventures this coming year.

In conclusion, the most important thing we can share about this last year is how God has provided and cared for us. We all feel so satisfied and encouraged in God’s love. We pray that you have found him to be your all, and that you draw close to him this coming year.

May Activities

2011-06-02T13:36:00.000-07:00

May has been filled with lots of fun for our family!

1. We were granted our wish for a camper from Make a Wish of Michigan. It is everything we wanted and we are so excited to have a camper of our own. We were able to take it on its maiden voyage over Memorial Day, and though the weather was lacking, it was everything we had hoped for.

2. I participated in Run for Wishes to benefit Make a Wish of Michigan by running the Riverbank 5K. I was able to raise $500 to support a great cause! Thank you to all who contributed!

3. We were also able to participate in a few other fun events for special needs families. One was the Visual Impaired Sports day, where the kids were able to play blind baseball, jump in a bouncy tent, and make garden stones. And of course, there was free food ;) Another fun event was attending a Whitecaps game with Ken-o-sha, Ellie's school that provides her therapy.

And that was all in May! June has promised to be just as exciting, with my sister's wedding, vacation bible school, and more camping!

Blessings!!

Today is World Wish Day

2011-04-29T05:40:00.000-07:00

Today is World Wish Day. Please consider making a donation to Make a Wish of Michigan in Ellie's name. I will be running the Riverbank 5K on May 14 to raise money for Make a Wish of Michigan.
http://www.active.com/donate/makeawish2011/vedrafamily

Make a Wish is granting our wish for a camper some time in May. Life with a medically ill or special needs child is so difficult. Organizations like Make a Wish are a bright spot and bring joy to families every day. Both the special child and the siblings get the chance to experience something amazing.

Thank you for joining me in supporting this cause!

-Emily

In like a lion, out like a lamb?

2011-03-26T11:08:00.000-07:00

March started out rough for us, with Ellie again getting sick, this time worse than the others that she had this winter. I thought for sure it would be the one that would put us in the hospital. But, in true Ellie form, the fever broke right after I called her pediatrician, and she was on her way to health again, lol. The month also was rough with some nursing drama and administrative duties on my part, and I am glad to say we are on our way to health in those areas as well.

March has been a time of reflection for us as well. Ellie getting sick once again helped me come to the long-coming realization that I will probably not be able to continue homeschooling. It is still something we are struggling through, but things are pointing in the direction of the boys entering school in the fall. With Ellie's continuing high needs and appointments and care, the work of schooling has been falling to the wayside. We are starting to realize that in order to meet all the needs in the family we may need to change some of our plans for schooling. Please pray for us as we work through these issues.

March has also been a month of anticipation and planning. Next month Adam and I will be taking a trip to Florida, just the two of us. This will be our first solo vacation since our honeymoon. As you can imagine, planning this trip, with Ellie's needs and the boys' care, has been quite a job. But I am confident that the preparations will be worth it and it will be a great time of relaxation and bonding for me and Adam. Please pray for Ellie's health and well-being while we are away.

Through this month, we have been constantly reminded of God's unceasing love for us and his faithfulness. This many not have been the life we would have planned or chosen, but God has been good and reminds us that his love and plan never fails. To Him be the Glory.

Winter Storm

2011-02-06T12:20:00.000-08:00

Here are some pictures from the recent blizzard that hit Grand Rapids. Calvin closed, so we had Adam home for a day during the week, which made us all happy. The boys have enjoyed making tunnels and forts in the big drifts.

Feeling Better

2011-01-09T12:29:00.001-08:00

Ellie has been sick for over 2 weeks, starting the week before Christmas. It was just a cold, but a long illness nonetheless. So you can imagine or relief and happiness that she is finally better. I think she is really happy about that too!

New Family Pictures

2010-12-16T09:56:00.001-08:00

This fall, our dear friend Kristin took some family photos for us. They turned out great :) Thanks Kristin!

more pics here

Hearing Therapy

2010-12-10T11:43:00.000-08:00

Ellie has failed every hearing test and is labelled "legally deaf". She is on the registry of blind and deaf children in Michigan. We, of course, never bought that. We know that her brain does not always process stimuli correctly or quickly, but she can definitely see and hear.

In this video, Ellie surprises the audiologist. When she hears the noise she breaks into a huge smile. Who you calling legally deaf?

Winter is here

2010-12-05T11:29:00.001-08:00

The boys are thoroughly enjoying it.

All dressed up...

2010-12-04T19:34:00.001-08:00

For the church Christmas party. Her first princess dress, and she rocked it!

Ellie's Therapy

2010-11-09T09:49:00.000-08:00

Ellie has been making "great" steps in therapy this fall. I put great in quotes because they are huge to us, but to the outside world may seem like nothing.

One thing that we are working on with her is using her hands to play and also to communicate. She has a "switch toy" that is a light-up toy operated by a switch that she touches. She is getting really good at it and also shows her joy and pride in her accomplishment.

This is important because if she can use a switch to play, it could move into using a switch to communicate and do even more sophisticated things. She could push a button for yes or no or even play computer games.

Here is the video:

Some Pics

2010-10-23T11:50:00.001-07:00

More fall pics here.

Updates

2010-10-07T11:17:00.000-07:00

We have had a super busy fall around here. Lots of fun with friends and family. What a blessing to be able to do so many activities with Ellie. But it is also a blessing to be able to do some things without her, thanks to our nursing coverage. Adam and I have been able to go out as a couple; we enjoyed our first night away since Ellie was born. We have also been out with friends and on a few dates as well. It has really helped us feel more normal. Nursing coverage has opened up new experiences for the boys too. They are a part of a homeschool co-op this year, and Ellie is able to stay home with a nurse. The boys are learning a lot, and Ellie is able to do her PT and daily routine. It is really nice for all of us. I do not regret the years I took care of her with no help, as we bonded a lot and I felt very confident in her care. But I am also grateful that we decided to pursue nursing help, as it has helped us achieve new goals in our lives too :)

Ellie is Three!

2010-09-18T14:14:00.001-07:00

This past Sunday we celebrated Eleanor's third birthday! She is doing better than ever, and is a blessing to all who meet her. Her health is stable, she is interactive, growing, and still super cute ;) She has come farther than anyone expected. Thanks be to God.

Camping

2010-08-19T07:24:00.001-07:00

Well, we passed another milestone we never thought we would reach: camping with Ellie! Last week we went to Family Camp with our church. It was a great week for our family.

Camping is something I never thought would be possible with Ellie. She has so much equipment, we worried about what we would do in case of emergency, we worried about the weather, we thought she was just too much work to take along. But over the past years and months, Ellie has proven to be stronger that we ever thought she would be, and her care is much less of a burden than it ever was. So we took the plunge and went camping!

We were able to borrow a camper that had A/C and pretty deluxe accommodations. We camped near friends that loved us and helped us in many ways. And there were friends everywhere to keep the boys occupied and entertained.

Our first camping trip: a success! We can't wait to go again :)

More photos are hosted on Facebook (public)

Yup, it's July

2010-07-08T12:36:00.000-07:00

Hey all, sorry for being so MIA. This summer has proven to be more difficult for me than the winter was. I guess the weather, the yearly activities, the dates on the calendar-they all remind me of last summer and all that took place.

I just don't have much to say. I am hurting. I am surviving. I am growing. I am relying on God's grace. I wish there was something deeper to say, but sometimes at the deepest of our suffering, we stop thinking in words and just... feel.

I do want to keep in touch with you all though. And I don't want my readers to go away. So here are some photos of summer activities for you to enjoy.

VI sports day: a special day for kids with vision problems. The boys were able to partake in the fun activities, and Ellie was able to watch and enjoy a special day.

Father/Son Camping Trip: The boys were able to go on a rustic camping experience with Adam and some friends.

May Photos

2010-05-20T14:19:00.000-07:00

We are having a fun month of May so far! The highlights have been several trips to Meijer Gardens, walks to the neighborhood park, and a Whitecaps game we attended with Ellie's school. Enjoy these pictures, and others in the photo album.

Video *edited

2010-05-13T10:55:00.000-07:00

I get a lot of requests for updated video of Ellie, so when she started talking today, I seized the opportunity. When I lay her in her crib to change her diaper, she immediately brightened and started chattering. Her talking and excitement often makes her muscles start to tense and contract, so sometimes her noises have undertones of discomfort mixed with happiness.

**eta: I fixed the video. Sorry it wasn't working for everyone.

Ellie Update

2010-05-01T15:31:00.000-07:00

I thought it was time for an update on our little princess. She has had a busy month!

Ellie's heel cord surgery was successful, and we got the casts off before our trip to Florida. It is so neat to see her foot in the correct position. The day she got the casts off she also was fitted for new AFOs (ankle foot orthotics). She will need to wear them around 20 hours per day to ensure that she maintains full range of her heel cord. Here is a picture of Ellie with her AFOs on:

The same day, Ellie was also fit for a TLSO brace (Thoracic Lumbar Sacral Orthotic). This brace will help support her spine since she does not have the muscle tone to hold herself up. Ellie is starting to get scoliosis because when she is sitting in her wheelchair or in any upright position, her body slouches and she is not able to maintain a straight upright position. This orthotic goes around her torso and holds her in an upright position without slouching. The first time we put it on her and set her in her wheelchair, she was a full two inches taller and her shoulders were up around her headrest! That showed us how much she was slumping in her chair.

In other news, we received the official word that Ellie has been approved for a type of Medicaid for children with special needs. This will pay for the in-home nursing and also a few other medical things that were not covered before. This is a huge blessing and a happy ending to the six months that I have been working on it. We have started with some daytime shifts of nursing, and it is going well so far. I am able to concentrate on schooling the boys and not worry about Ellie's needs being met. I am also able to enjoy Ellie while the nurse works on her equipment and other tasks. We have had a few evening shifts and spent some focused time on the boys at Frederick Meijer Gardens, as well as a had a date night! I think this will really help me juggle the needs of all the people in our family.

So that is what is going on right now. We praise God for seeing Ellie through another long winter and for his mercies new every morning!

Florida Trip

2010-04-19T13:20:00.001-07:00

We just got home from a fantastic vacation in Florida! We were very blessed to go down there with Adam's parents and sister to a timeshare condo in Orlando. It couldn't have gone better. We had fantastic weather, Ellie was in great health and spirits, the boys traveled well (we drove), and we had great treatment at the Disney parks we went to. Now we are home, rested, and have great tans! :)

Here are some photos to wet your appetite. The rest are in a facebook album (accessible by all!).

Soaking in the Sun

2010-04-01T13:26:00.000-07:00

Ellie's surgery

2010-03-19T09:03:00.001-07:00

before surgery

new casts

comfortable after surgery is done

resting comfortably at home

Ellie's surgery went well yesterday. The doctor said everything went as expected.

We had to be prepared for the possibility that Ellie would need some sedation, so she was not able to have her regular feeds in the morning. That turned out to be unnecessary though as Ellie was the perfect patient and did not move or get too scared during the procedure. The doctor even allowed Adam and I to stay in the room and comfort Ellie while she operated! Ellie did cry quite a bit especially when the doctor was stretching the tendons. But she calmed down while the casting was done.

It was a full tenotomy, which means that the tendon was cut completely, but in infants and young children it reattaches and heals itself. So during this period of casting, the tendon is reattaching and healing, only in a more comfortable and natural position than it was before.

Ellie is now resting comfortably. She had a very peaceful night and is adapting to the casts really well. She will get the casts removed in around two weeks, at which point she will have new AFOs made (splints) that she will wear to keep the tendon stretched to the right position.

2010-03-15T18:57:00.000-07:00

Ellie's Heels

2010-03-10T17:34:00.000-08:00

Well, we went to see the Orthopedist today to get casts on Ellie's legs, but walked out with a surgery date instead! After looking at Ellie's heel cord and weighing the options, we decided that it would be better to just jump to the surgery option.

Surgery will be next Thursday at the hospital. They are going to try to do it with just local anesthesia, but want to have her at the hospital in case complications arise. It is a small incision in each heel, not even requiring stitching. They make a small clip in each heel cord, allowing it to stretch to full range, and then she will be casted for a couple of weeks while it heals and stretches.

I'm confident that this is the right decision. Ellie has been fighting this problem since birth, and all the non-invasive options just did not do enough to correct the problem. I'm only sorry that we were not referred to an Orthopedist earlier!

The doctor also looked at all of Ellie's ortho situation, including her spine and hips. These are very important areas for severely disabled kiddos. There is a high risk of the spine curving due to lack of support, and of hip dysplagia due to contractures in the hip area.

Well, we found out that Ellie has the early stages of both :( For the spine, the Dr is recommending a special brace that will offer support when she is in upright sitting positions (mainly her wheelchair). The extra support will hopefully help her spine stay straight. For the hips, the Dr is recommending trying botox injections, this time in the hips. This will hopefully relax things and allow the hips to remain in the correct position.

I was not surprised by either of these things, but disappointed that these troubles have begun. But we are no stranger to such things, and will take them as they come. I'm relieved to know about the problem and be in the care of someone who can help us prevent further damage.

Thanks for checking in!

Emily and Ellie

Ellie

2010-02-24T10:21:00.000-08:00

Ellie has had such a good winter so far! She has had a sinus infection and a couple of really small colds. She is on a maintenance dose of an antibiotic to prevent recurring infections, particularly sinus and ear infections. But besides that, she had not needed any additional medications this winter. She has not even been to her pediatrician since October. Praise the Lord for such a strong, healthy girl.

There have been a few new things for her though. First of all, Monday she got her first shots of Botox in her calves. Ellie has had a tight heel cord since birth. Her foot wants to stay in a "toes pointed" position and it is very difficult to get her foot to a 90 degree angle. We have combatted this since birth with foot splints, AFOs, and lots of stretching. But the last six months things have gotten tighter. This coincides with other tightening in her arms and legs, but also progress such as smiling and cooing. So, there have been some good things that came from her increased tone, but also bad things. We finally needed to address the heel cord problem when she started to get skin break-down on her heel.

The Botox shots, more commonly used for cosmetic reasons, will relax her calf muscles, in turn allowing us to stretch the heel cord and gain more range of motion. We are praying this will work well for Ellie as the other option is surgery to clip or lengthen the heel cord. We also have an appointment with an Orthopedist who will decide if some casting of Ellie's heel will help as well.

Another new thing for Ellie is that we have been pursuing getting some daytime nursing for her. I have been working with agencies, red tape, and paperwork trying to get some nursing approved for her for about 4-5 months. Things are finally moving forward, and I am starting to get optimistic that it might actually happen. I have had a nurse here a couple of full days this month, and it has been incredible for me and the boys. We are able to enjoy and spend time with Ellie, but without all the extra work of equipment, feedings, treatments. We have also been able to leave the house and do some fun things.

It has been quite a journey for me learning how to care for a special needs child, meeting her needs as well as those of the family and also myself. We went from night nursing when she was an infant, where I felt displaced in my own home, like my motherly duties were ripped from me. I know it was necessary at the time, as her needs at night were too much for us to handle, but I had a hard time bonding with Ellie, always wanting to prove that I could do it myself.

We then went to no nursing, which I think was great for our family. Ellie was on the same schedule as us, the boys started to open up to her and be more comfortable with her, and I felt like I gained confidence in taking care of her.

But since Hannah passed away, I have felt the need to take care of myself and the boys more actively. I was just surviving, torn between caring for Ellie and caring for the boys, never feeling like I was doing a complete job on either end. I also could admit to myself that cleaning out a suction canister was not necessary for me to show I love Ellie :) Someone else could very well do the many tasks of cleaning and suctioning, and I could still hold and enjoy my little girl. So this led me to finally surrender and ask for help. We shall see if and when that call gets answered.

It is interesting to look back at all the emotions we have had and lessons we have learned from Ellie. She has taught us so much about life, ourselves, about accepting help. I have a feeling the lessons will continue.

Ellie at the dentist

2010-02-16T13:29:00.000-08:00

Ellie went to the dentist yesterday. I was so nervous about how it was going to work with her trach and suctioning and everything. But it went great! She was the perfect patient and got a good report on her teeth :)

New Chair

2010-02-01T07:04:00.001-08:00

Ellie received her new indoor chair today. We have been waiting for this for a while. It will enable Ellie to sit at the table with us while we do school, or eat dinner, or play games. It also adjusts up and down, so she can be near the ground to watch the boys play, or up high by the counter. I'm excited because she will be able to be more involved in all our family's activities.

Ellie talks to her mommy too

2010-01-26T05:15:00.000-08:00

I think there is a rumor going around that Ellie likes Adam better than me. Okay, I probably started that rumor ;) But I thought I better post some proof that Ellie talks to me too :)

Hannah

2010-01-21T02:59:00.000-08:00

This morning I am reflecting on Hannah's funeral and how beautiful it was. It truly celebrated the victory that we have in Christ.

I have been meaning to offer DVDs to those who were not able to make it to the funeral. So please, contact me if you would like me to send you a DVD of the funeral service and a program. I hope it will be a blessing to you as it was to us.

Death is dead
Love has won
Christ has conquered

And we shall reign with Him
For He lives
Christ is risen from the dead

Family Photos

2010-01-18T09:40:00.000-08:00

Last weekend we got together with my side of the family to shoot some long-awaited family photos.

Vedrafamily

Osterink Family: my parents; my brother Jeff and his wife Jen with children Gwen, Moses, Reed, Grace; My sister Julie; and our family: Adam and Emily, Noah, Seth, and Ellie.

Grandkids

Merry Christmas and Happy New Year

2010-01-01T08:05:00.000-08:00

My first post of 2010! :)

We have been enjoying an extended Christmas break here at Vedrafamily. Adam gets off of work from Christmas to New Years, so there has been a lot of sleeping in, relaxing, movie watching, crossword puzzle doing, game playing, and family times.

We have had a good holiday week. Everyone has been relatively healthy and we were able to travel to Naperville to spend time with Adam's family. We all received exciting gifts that we have been playing with a lot. My favorite is a little video camcorder that is about the size of an Ipod, called a Flip. I have been making up for lost time taking videos of everyone this week. That means I will be posting a lot more video on the blog too :)

This time of year is often a difficult time, a time of reflection. I have spent a good deal of time missing Hannah and reflecting on the events of the past year, but I am also choosing to focus a lot of my energy on the blessings I do have, seen in the pictures below.

This year we are especially thankful for the baby that was given to us in Jesus Christ. We could focus on the hardships of the last years, the hopes that have been broken, the dreams vanished. But instead we must focus on all the promises that are yes and amen in Christ. What an amazing gift we have been given.

Here's to another year; we do not know what will come, but we do know that God will be faithful.

Just a typical day...

2009-12-19T06:48:00.000-08:00

Bathroom Project

2009-12-15T03:01:00.000-08:00

We are pleased to announce that the bathroom project is completed! It looks absolutely fantastic and we are so happy with the results. We are so thankful to all the help we got from our generous church and family! We have already given Ellie a few showers and it is so much easier to do in the new shower. Thank you so much to everyone that helped us!

Here are some before shots:

DURING:

AFTER:

You can view the whole project album here.

Daily Life

2009-12-08T03:10:00.000-08:00

Things have been going smoothly over here. We have quickly fallen into our old routines of a family of five. It feels good to be back to normal, but then I wonder if that is somehow dishonoring Hannah's memory. It is hard to balance the remembering with the moving forward. Yesterday Hannah would have been 4 months old. It pains me to think about what could have been, if she had been born healthy.

Ellie is struggling with a fever today. It started yesterday, and she spent most of the day sleeping and breathing hard. The fever lightened up in the evening but is back at about half-strength today. So far I am pleased with how she is handling it, but I miss her alert eyes and smiles.

Some big news around here is that we have been approved for 180 hours of respite care per year (comes out to about 15 per month). We have been very blessed to have a friend and nurse from the NICU agree to fill those hours for us. So, we plan to go to a wedding this month, just me and Adam! It has been 2 years since we have been alone, just the two of us (unless you count my c-section where my mom had Ellie in the waiting room)! We are looking forward to some opportunities to do some activities alone.

I have also trained a friend from church who is a pediatrician to stay with Ellie occasionally while I run errands or do fun things with the boys. She came for the first time last week and what a blessing that was for me to go shopping by myself! Thanks Jamie!

Another big thing we have been working on is a bathroom remodel. Our loving and supportive church and family have been helping us install a handicapped shower so that we will be able to bathe Ellie more easily in the years to come. It has been a long and exciting project that is supposed to be done at the end of this week. I look forward to sharing it with you via pictures or a tour when it is finished.

So that's what is going on around here. We have been doing really well considering. We praise God for Ellie's health and stability. We praise him for his sustaining grace as we continue to grieve. We thank you all so much for the prayers, cards, and many blessings you have showered on us. I feel so unworthy to have your love and support!

Decorating the Tree

2009-11-24T03:10:00.000-08:00

Hot-tubbing

2009-11-17T04:29:00.000-08:00

One of the highlights of our vacation was seeing how Ellie reacted to the hot tub. It was so amazing to see her grin as we lowered her into the hot water. She smiled the whole time she was in there!

It was also very relaxing for her to be in the hot tub. Her tight legs relaxed, her heel cords relaxed, her body became comfortable and loose. I think it was very therapeutic for her to be in the water. I moved her legs back and forth and she was able to feel all the sensations. I'm sure she enjoyed feeling weightless and relaxed.

Now I just need to figure out how to get a hot tub for her at the house! ;)

Home again

2009-11-12T05:26:00.000-08:00

We had a fantastic time on our vacation! It was such a relaxing and enjoyable time for our family. It really is a great place for us to stay with Ellie--it is not stressful to have her along with us at all. It is such a blessing that Adam's parents have this timeshare and let us use some points. This year we invited our friends the Hunters along with us. It was nice to have friends for the kids to play with, as well as some extra hands to help watch Ellie.

We have a million photos to go through; I am putting them all in an album. Here is my favorite so far:

Vacation

2009-11-06T09:51:00.000-08:00

Tomorrow we are leaving for a vacation at the Wisconsin Dells. We were there last year and had a fantastic time. We are looking forward to resting and relaxing, as well as spending time with some dear friends.

Everything about this vacation makes me think of Hannah. Tomorrow Hannah would have been three months old. It still breaks my heart to think that she is gone. She should be with us on our vacation, but instead our family picture will look the same as it did last year, right before I got pregnant with her. There will be just five people in the picture, not six.

Of course, we thought our dreams of ever going on vacation again vanished when Hannah was born. There was no way we could do this with two special needs children. But now that she is gone, we have a bit more ability to do things like this. So, again, I am drawn to thinking of Hannah, and how her death actually made this vacation possible.

I guess all big events in our family will make me think of Hannah--how she should be here with us, or how her being gone affects our lives. And so it should be; she is a part of us that will never be forgotten.

Last year:

Ellie Talks

2009-11-03T09:59:00.000-08:00

Ellie was in a particularly good mood today and "talking" up a storm. Enjoy!

If you can't see it, try this link
http://www.youtube.com/watch?v=BbzFDrR8ppw

Pictures

2009-11-02T05:30:00.000-08:00

These aren't the greatest pictures from Halloween, but they will have to do!

P.S. I am hoping to update the blog more often. Please don't go away! :)

One Month

2009-10-15T01:35:00.000-07:00

Today we are missing Hannah. It has been one month since she left us. In some ways it seems like much longer. We miss her so much. We hold on to the memories and mementos of her, thinking of her all the time.

October 15 is Pregnancy and Infant Loss Remembrance Day. Please remember all those who are hurting with the loss of a child. I have a feeling the pain never fully goes away.

I'm so thankful for all my children-Hannah in heaven and also the three God has given me to care for here on earth.

Brothers

2009-10-10T13:39:00.000-07:00

Smiling Girl

2009-10-04T10:29:00.000-07:00

Ellie has her first cold of the season. She is doing well with it: no fevers, no extra oxygen yet. In fact, we got some smiles from her this afternoon in spite of her being sick!

2009-09-29T11:37:00.000-07:00

Grief is a strange thing. The days go by and appear from the outside to be normal. Taking the kids to the park, getting groceries, taking care of Ellie. But from the inside they are different. They will never be the same.

I was pregnant for nine months and gave birth to a beautiful baby girl. I had dreams for her, dreams that were not realized when she was born severely disabled. But our dreams changed, molded to the new reality. We set up her crib next to Ellie and had medical equipment delivered. We adapted. We planned.

But that all ended when Hannah had a tracheal bleed that proved to be fatal. We said goodbye to our precious baby girl, to the plans we had for her.

It is hard to come to grips with dreams lost. Our house will not be full of the many children we had hoped and longed for. It has been hard to get used to the "new normal."

We struggle with questions throughout the day: What is God's plan for us? Why wouldn't he give us the good things we are asking for?

But our good is not always God's good. Our plans are not always his plans. We may have had dreams and goals, but our ultimate goal is God's GLORY. And that is what is happening. God is being glorified. He is glorified through Hannah's life, through the suffering of our family.

We mourn, we suffer, but not in vain. We suffer for the sake of Christ, comforted by a savior who has suffered much more. He has already given us everything we need, more than we could even ask for. He has given us eternity with God. That is where Hannah is already. She was created for eternity with her God.

Our prayer is that you know this comfort and that if you don't, that you would turn to God today. We will stand as witnesses that God is faithful and that Jesus Christ is worth suffering for.

For God's Glory--

Obituary

2009-09-17T05:05:00.000-07:00

Hannah's obituary can be found here.

Please consider making a donation in Hannah's name to the Helen DeVos NICU. The people who work there have touched our lives in so many ways and were there for us in our darkest time. Donations can be coordinated through Stroo Funeral Home.

Arrangements

2009-09-16T11:32:00.000-07:00

Funeral Arrangements for baby Hannah Grace

Visitation will be this Friday evening, Sept. 18, from 7-9 pm. at
Stroo Funeral Home
1095 68th St. SE (between Eastern and Kalamazoo Ave.)

The funeral service will be on Saturday, Sept. 19, at 11 am. at
Harvest OPC
930 52nd Street (off 52nd near Clyde Park)
Wyoming, MI

Hannah is with Jesus

2009-09-15T17:15:00.000-07:00

The Lord in His unsearchable wisdom has taken our little Hannah home to be with Him. We are devastated by our loss, but are comforted that she does not have to suffer any longer and she is now safe in the arms of her heavenly Father.

We will let you know more as arrangements are made.

Happy Birthday Eleanor Rose!

2009-09-14T04:56:00.000-07:00

trying birthday cake frosting :)

We had a great day celebrating Ellie's birthday on Saturday. She is such a miracle, strong and healthy. It was bittersweet though, with a member of our family missing.

We are hoping to hear more about the plan for Hannah and her homecoming today. At this point we don't know when she will be coming home. She has been stable since her last incident, meeting all of her goals. We will keep you updated.

Update

2009-09-09T08:52:00.000-07:00

Hannah is slowly but surely getting back to "normal." She has not been scoped, so we do not know the status of her trachea tissue, but there have been no new bleeding events.

She is not sedated right now, but resting comfortably and hopefully doing a lot of healing. She is on full feedings and breathing with pressure from CPAP. We hope they will consider doing trials off of the CPAP soon.

We don't know how much longer she will be in the NICU. I guess there will just come a point where we are all comfortable with her coming home, but that is not now.

Thank you for lifting us up in prayer this weekend. Our Hope endures even in these trials.

Another Call

2009-09-07T02:31:00.000-07:00

Hannah is okay.

The call came again last night. "Hannah is having another bleeding episode. You need to hurry in." Grab Ellie. Grab our stuff. Run a few red lights. Run to the NICU.

This time I was certain she would be gone when I got there. Why else would God let this happen again? Why all this needless suffering?

When we got there she was stable again. The bleeding had stopped on its own. They had given her another transfusion.

She had wild eyes, squirming and looking around. Why is this happening?

There is more granulation tissue. They are not sure if more has formed since Saturday or if it had gone unnoticed since there was so much blood when she was scoped last time.

There is not a lot they can do. The tissue needs to heal. They are giving her some steroid drops down her trach to help shrink the tissue. She is sedated, in the hope that if she does not move she will not irritate the area. Please pray for healing. Only time will tell.

I stare at the phone, waiting for it to ring.

The call in the night

2009-09-05T05:10:00.000-07:00

Hannah is okay

One thing you never want to get when your child is in the hospital is a phone call in the middle of the night. That is what we got last night. I was up pumping and the phone rang. My heart sank because I knew what it had to be. "Emily, Hannah is not doing well at all. We think you should come in right away. Hannah is losing a lot of blood and we are doing chest compressions."

Adam and I scurried to get Ellie in the van and sped off to the hospital. Thankfully, his parents were in town and could stay with the boys.

When we got to her bedside, Hannah was already stable and the worst was over. She had been bleeding from her trach, mouth, and nose. She had lost so much blood that they were giving her blood from the blood bank. The bleeding had stopped though and they were now trying to find out from where it was coming.

The ENT came in and scoped her and found a "granuloma" inside her trach. It is a collection of tissue caused by irritation from a foreign object being in her body. They suspect the trach tube was rubbing against her trachea and caused this growth of tissue. Granulation tissue can bleed profusely-in this case they compared the amount of bleeding to that of an arterial wound.

The ENT was able to remove the granuloma and the bleeding is under control. Hannah is on the vent resting. Thankfully, she did not get a lot of blood in her lungs and we are optimistic that her breathing will get back to where it was before this incident.

We are so thankful that Hannah was not home when this bleeding occurred. It would have been very difficult for us to manage it at home. The outcome may not have been so good. We are also thankful that we have found a probable cause for the bleeding and that it seems to be under control.

Ultimately, we know the life of Hannah is in God's hands. As we were driving to the hospital we were preparing to say goodbye to our daughter-but again God had a different plan. We continue to rest in His loving and comforting arms.

Update

2009-09-03T15:47:00.000-07:00

Wow, we have been busy here, getting ready for Hannah to come home.

We have completed our trach "training" (ha ha) and have proved to the hospital that we can take care of a baby with a trach. We have filled out pages of paperwork and talked to countless people, lining things up so that we can go home.

Hannah has been doing great, eating well, breathing well. She is now tolerating an HME (the sponge nose on her trach) during the day. Next step: trying the PMV (speaking valve).

We are working around the house, getting things organized and set up for Hannah's homecoming. We are organizing the girls' closet to hold all of their medical supplies. Tomorrow all of Hannah's equipment and supplies are delivered so that I can get them all put away before she comes home.

At this point, it looks like she will be cleared to go home the middle to end of next week. She is stable enough to go home today, but there is red tape that needs to be taken care of before she can come home. We are working to get some daytime nursing shifts scheduled so that I will be able to get out to take one or both girls to the doctor, get groceries, or just do something special with the boys. We will see how it goes, taking one day at a time. Most of you will remember that we were not huge fans of nursing care in our home, but we recognize that having two medically fragile children will present new challenges.

Thank you so much for your support and prayers. We have received many gifts and cards and yummy meals that mean so much to us. We thank you for your faithfulness in supporting and praying for us.

We praise God that things have moved forward as planned and that Hannah will God-willing be home very soon!

Pictures

2009-08-29T03:44:00.000-07:00

Thanks Kristin :)

Surgery went well

2009-08-25T07:49:00.000-07:00

Surgery went well today. Hannah is now resting on the vent. We hope she will be able to start feeds tomorrow and also quickly wean off the vent.

Thanks for your prayers for surgery!

Hannah Update

2009-08-24T13:49:00.000-07:00

Things have been much more stable with Hannah. She has pretty much weaned off of CPAP and back onto her trach collar. She has had no other episodes of breathing trouble, though we still have not figured out what happened during the episodes. We are just thankful she has been stable.

Her nissen g-tube surgery is scheduled for tomorrow morning. Before they can do the surgery she needs to be tested one more time for her infection to make sure it is gone.

We had a family conference with the doctors today to talk about Hannah's care plan. If all goes according to plan, we should be able to have Hannah home within 2 weeks after her stomach surgery.

We still have a lot of things to do before Hannah comes home. Please pray for us as we make decisions and ready the house for her to come home.

Prayers for Hannah

2009-08-21T09:34:00.000-07:00

Just wanted to send out a quick update. It is hard to explain everything that has been going on.

Yesterday, Hannah had two episodes where she had difficulty breathing and then eventually stopped breathing all together. She needed to be bagged and turned blue before they were able to get her going again.

We are not sure what happened. There are a lot of theories involving trach placement, trach length, and other things. At this point no one knows what really caused the episodes.

Hannah is back on the vent and has been stable now for over 24 hours. They have been weaning the vent again and she is doing fine right now.

Please pray that either we figure out and fix what caused the episodes yesterday, or they just plain do not occur again.

Adam and I were there to witness one of her episodes and I'm not sure I will ever forget seeing everyone rush to her bedside and work on her.

Please pray for a stable airway and strong breathing for Hannah.

How did this happen?

2009-08-20T03:28:00.000-07:00

It is now clear to doctors and to us that the genetic mutation the girls have is autosomal recessive. That means Adam and I have a 1 in 4 chance of having a baby with the disease.

The disease we carry is obviously very rare, or at least presenting itself in a very rare way. Yesterday we met with a biochemist metabolic specialist from U of M who, like everyone else, is very puzzled by our case. He, along with specialists from Cleveland Clinic, Johns Hopkins, and DeVos Childrens, is studying our case and trying to figure out what it is.

But how did two people in the world who carried this super rare gene meet up and have children? Adam and I just happened to have this rare gene in our bloodline and just happened to meet up and fall in love? Well, it is something that only God could ordain...

-Adam just happened to go to Calvin for college, even though he had never heard of the dutch reformed tradition

-Nathan just happened to work at Baker Bookhouse with me and just happened to force us to meet

-I just happened to be one of the only people in my family to marry a non-dutch person (LOL)... which should strengthen our bloodline, not weaken it!

Anyway, we are as puzzled as you are, that of all the people in the world to marry, we met and fell in love, and we both have this crazy rare genetic mutation that makes a very rare disease. It could only be from God! He ordains everything, including the fact that we now have two very special girls to love and take care of.

More photos and an update

2009-08-18T15:29:00.000-07:00

Hannah had a great day today. She successfully weaned off of CPAP and is just on a little oxygen with a humidity collar! This is great progress and also confirms to us that she will not come home on a vent. This is great news!

She is doing a great job fighting the infection and is waking up a little and starting to interact a little more. When we got there tonight she was awake and we saw her eyes for the first time. It was very exciting. Adam and I also got to hold her for a long time, as well as suction her ourselves (I know-a weird accomplishment, but it makes us feel good to take care of her ourselves).

Big Sister

2009-08-18T09:12:00.000-07:00

Here is what Hannah looks like today. Check out the IV in the head :(

Hannah Update

2009-08-17T09:21:00.000-07:00

It was an eventful weekend for Hannah. On Saturday evening, she was weaned off the vent and on to CPAP. She was doing great with it until the early morning hours of Sunday, when she started having labored breathing. The docs put her back on the vent, but even with higher settings she was still having trouble. They called in the ENT to check out her trach and he decided to do a trach change to see if that would help. It helped immediately and she seemed to breathe better. They think it might have been positioned funny or something, causing her breathing trouble.

But, Hannah also started to burn a fever and have a high heartrate early Sunday morning. They took some labs that indicated she has an infection. So, she is also now on some pretty strong antibiotics. They think the infection may have come from her UAC (umbilical IV site).

Today, Hannah is looking much better and they were able to wean her back off the vent and on to CPAP. She is breathing well on CPAP right now.

Hannah seemed to be waking up a little and squirming around when we visited around lunch time. She also had to have a lumbar puncture today to check to see if the infection spread to her spinal fluid. Preliminary results show that it has not.

They have pulled the UAC line and will have to start a standard IV today to administer the antibiotics. I am hoping they are able to get a site in her arm and not have to put one in her head. I don't want her hair touched!

So, this is a little set-back for Hannah, but it will hopefully not affect the plans to have the g-tube surgery and get her home in a couple of weeks. She will have the rest of the week to heal and rest, and then they will probably set up the stomach surgery for next week.

Please pray for quick healing for Hannah, and also that she will be home soon!

Surgery was a success

2009-08-13T09:23:00.000-07:00

Hannah's surgery was a success this morning. She is now trached and recovering on a vent. As soon as she is awake they will try to wean her off the vent and then re-start feedings again. It will take about a week to recover from the surgery, at which time the doctor will do the first trach change and then it will be up to us!

Waiting for the surgery

Recovering after surgery

Seeing her precious face

Hannah Update- Wednesday

2009-08-12T07:26:00.000-07:00

Hannah has been struggling to breathe on CPAP. She often gets into a position that makes her start to retract in her breathing and it is very sad to watch her work so hard. Because of that, we asked that the ENT consult be moved up.

The ENT was able to come this afternoon and told us what we thought we would hear: that he is recommending a trach. Hannah is not handling her secretions well and her vocal chords are not moving as well as they should. All of this is causing her difficulties with breathing.

Frankly, getting a trach will be a relief for us. It will stabilize her breathing and help her handle her secretions so much better. We are comfortable with a trach, and though we would love it if Hannah could breathe well without one, it is obvious that is not in the cards. So, having accepted that fact, we asked that the doctor perform the surgery as soon as was possible for him.

The tracheostomy will be performed tomorrow at 12:30. We are excited for Hannah's breathing to be stabilized and to see her beautiful face without the CPAP setup all over it. We are also excited to hold her comfortably without worrying about her breathing.

We are doing well and excited to push things forward and get Hannah home quicker. We are excited to have her join the family. I already picture myself sitting on the couch with both girls next to me. Noah is excited to have two babies to kiss and love on.

We praise God for the strength to continue moving forward in this journey.

I can’t remember a trial or a pain
He did not recycle to bring me gain
I can’t remember one single regret
In serving God only, and trusting His hand
All I have need of, His hand will provide
He’s always been faithful to me. (sara groves)

We thank you for your prayers. We thank you for coming up to us even when we don't know you to say you are praying. It means so much.

Love,

The Vedras

Hannah update

2009-08-11T05:31:00.000-07:00

Sorry for the lack of updates. Yesterday was a busy day as I came home from the hospital and the boys came home from camping. We had a nice evening together reconnecting with the boys and getting settled at home.

Hannah is still doing well, maintaining her breathing on CPAP. She has had some trouble tolerating her feedings, so they took a little break for a day or so and now have re-started them again this morning. She seems to be doing better with them today. She is being fed through a tube that goes down into her small intestine.

We have been waiting for consultations from specialists and they are all trying to come as quickly as possible. Hannah has seen genetics, neurology, urology, and opthalmology over the last few days. We are eager to see the ENT and see what he has to say about needing a trach.

Hannah had an MRI on Sunday which showed very similar to Ellie's MRIs, revealing decreased white matter. The girls appear to have many similarities so far.

The plan is to wait until we get some information back from various specialists in order to make a decision on a course of action. We are hoping that we can be out of the hospital in less time than Ellie's stay.

Thank you for the prayers and words of encouragement. We will keep you updated as we learn more.

Holding Hannah Grace

2009-08-09T00:44:00.000-07:00

I was able to hold Hannah Grace for the first time last night. She tolerated it really well and likes to cuddle :)

CPAP time

2009-08-08T13:18:00.000-07:00

Hannah was successfully extubated today. She was breathing on her own for quite a while but then it became evident that she needed a little help keeping her airway open. She was switched to CPAP to help provide the pressure to breathe. CPAP does not breathe for her, like a vent, but just provides enough pressure to keep her airway open.

Hannah is following the same pattern as Ellie. It is not the path we were hoping for, yet it is one we are familiar with.

Hannah with no tubes

Hannah with CPAP

Vent update

2009-08-08T06:06:00.000-07:00

They were able to turn down the vent even further for Hannah this morning. She is taking most breaths on her own. The settings right now are at 15 breaths per minute, but Hannah is showing on her monitor that she is taking 30-40 breaths, so most of them are on her own.

They are going to check to make sure her numbers look good and then try to extubate her! Ellie was extubated at this same age, but she had to be moved to CPAP because her airway kept collapsing due to lack of tone. That is what ultimately made her need the trach. If Hannah can show that she can breathe without her airway collapsing it would be a huge gift!

Please pray that by this evening we will be watching our daughter breathe on her own. We might be able to hold her this evening too.

In other updates, the boys are off camping with my Mom and Dad for the weekend. Adam and Ellie will keep me company at the hospital with lots of visits to baby sister.

Thank you for all the kind comments and prayers. We are so blessed.

Hannah Grace photo album

2009-08-08T00:22:00.000-07:00

I started a photo album for Hannah at Facebook. It should be able to be viewed by the public. Check it out!

Hannah Grace in the NICU

2009-08-07T09:04:00.000-07:00

Hannah is still on a vent and not breathing on her own. We were visited by Ellie's Neurologist (and now Hannah's) to talk about her condition and a course of action. Like Ellie, Hannah has minimal reflexes and diminished movement, so in a lot of ways this is looking like Ellie's unknown disease. We are watching, waiting, and praying. The Lord is my shepherd I shall not stand in want....

-Adam

Introducing Hannah Grace

2009-08-07T01:35:00.000-07:00

Hannah: favored grace

We chose the name Hannah because we knew no matter the outcome that God in his loving grace had chosen this path for our family. Believe me, we will need the daily reminder!

I was laboring all day yesterday and by evening it was getting painful. We arrived at the hospital (me, Adam, Mom and Ellie). I was in active labor at 5-6 cm. I was prepped for the c-section and at 12:06 on August 7, Hannah Grace was born.

Hannah did not try to take a breath after birth and was intubated. She was clearly floppy right away, with some similar signs to me and Adam: floppy legs, wrist drop, curving in feet. Wow, it is hard to describe the moment that my prayers went from "please crying baby, please crying baby" to just "breathing baby."

Hannah was settled into the NICU and I into recovery. After an hour or so they were able to wheel me (along with Adam, Ellie and Mom) to the NICU to visit Hannah Grace. The sights and sounds were so familiar- in both a good and bad way really. Hannah was stable, breathing on a ventilator but not needing any O2.

I've been down there again this morning and she is still stable. They have turned down her vent settings a little and she has done well, so that is a good thing. At this point it is assumed that she has what Ellie has. We are just praying that she will have a lesser form.

Please pray that she will not need a trach. That is such a burden and we would love to be spared everything that goes with having a trach. Please pray that Hannah would continue to improve, whether it is in little ways over what Ellie has, or in huge ways too.

We're all still in shock here. It is hard to express emotions and disappointment.

The best laid plans...

2009-08-03T09:00:00.000-07:00

The amnio went fine this morning but the results came back that the lungs were not mature enough to do the c-section this week. We're quite puzzled about this since Ellie was born at 37 weeks with fine lungs, but who knows.

This throws all our plans out the window, as they won't repeat the amnio until next week Monday, putting a possible c-section date closer to 38 weeks, which is past the gestation I went with Ellie. Maybe I'll make it until then, otherwise we will be having an emergency c-section if I go into labor.

Trusting in His plan...

Update

2009-07-29T03:00:00.000-07:00

When is my baby sister going to be here, Daddy?

We were able to move up the c-section date so that there is less chance of going into labor before it is scheduled. We really don't want to take any risks with prolapsed cord or an unstable lie. So, Monday, August 3, I will be going for an amnio to check lung maturity. Provided that goes well, the baby will be delivered via c-section on August 6. Eight days!

There are no updates as to the health of the baby. No one even wants to venture a guess. It is crazy to think after all this unknown and waiting we will know one way or another on August 6. We are trying to prepare for either scenario, but it is really difficult to do. Your heart dreams of snuggling a healthy baby girl, while your head tells you about all the odds and bad signs and worst-case scenarios. But we plunge forward on this path that God has placed us; we are guided by a deep desire to glorify God and learn what he would have us learn.

Thanks for thinking of us and lifting us up to our Heavenly Father.

Update--7/22

2009-07-22T07:02:00.000-07:00

We were called last evening and our ultrasound was pushed up to this morning! No time to worry, not that I do that anyway ;)

Going into the ultrasound my prayers were that baby girl would show signs of strength and have a bigger stomach. I didn't pray for the fluid to go down, because really that is a done deal.

It was very comforting to know that today is a day of prayer for our church and everyone was praying for us, even though they had no idea I was going in for my ultrasound this morning.

We started with a fluid check. I have 41 cm of fluid! That is up about 10 cm from 2 weeks ago. Normal is 15-25 I think. No wonder I am getting so uncomfortable. Like I said, this was not too surprising, since I can barely bend over and we knew there was a fluid problem. Of course, this is not a reassuring sign, since it is following the same pattern as Ellie's pregnancy did. But we also know that extra fluid can mean nothing in and of itself.

But... Baby's stomach was the biggest they had seen in all of our ultrasounds so far. In fact the tech said that if it was her first time doing my ultrasound, or if she had seen a normal stomach earlier on, she would not have even mentioned the stomach, it was that close to normal. The doctor also said the stomach was the biggest he had seen so far on our baby girl. So that was very good news. We also saw some good movement during the ultrasound and of course everything else looks perfect-heart, brain, etc. And baby has lots of hair :)

We talked to him more about tone and movement, and he said that he has seen babies with no tone and our baby does not look like that. It is so hard for us to reconcile that with the other signs we are seeing, yet we are so reassured that even if there is swallowing problems there will possibly be better tone than Ellie has (which is none). With genetic problems like Ellie probably has, there can be greater and lesser severity as it plays out in each person. So, this baby could still have what Ellie has but have a lesser severity.

So what is the plan? We are scheduled to do an amnio on August 10; I will be 37.5 weeks. We will be checking for lung maturity. If the baby's lungs are ready (I'm assuming they will be, since all my babies came around that early, with Ellie coming even earlier than that) the c-section will be a couple days later.

Baby will be checked immediately for a potential trachial-esophagus problem where the throat does not connect to the stomach (a possible cause of this whole mess). They will have to stick a tube down her stomach to see if it is connected. If that is the problem, we will be thankful that she is otherwise normal, but sad because she would need to have immediate surgery. So, kind of a lesser of two evils. Of course, there is also the chance that she will come out and need breathing support and be sick like Ellie. And the best case scenario would be a completely healthy baby. What a blessing that would be!

I am concerned that 37.5 weeks will be too late for the c-section, since Ellie came at 37. I am afraid of this all going down before then as an emergency and out of control, but I will talk to my regular OB more about that on Friday.

So how are we doing with all of this? We are holding fast to HOPE in Jesus Christ. We praise God that we have not lost our faith in his loving plan and perfect salvation. We trust that we serve a loving God, as there is no greater proof of that than when we stand at the cross.

We have also felt the pain of a broken heart again and again. We cannot deny the hard times as well as the times where we feel supported or encouraged. But we do not go through the valley alone. We have been comforted by God's grace and the prayers of fellow believers. We cannot thank you enough for your prayers. I read the blog comments and emails over and over to gain strength each day.

Some Not-so Reassuring News

2009-07-12T09:20:00.000-07:00

Friday we had another ultrasound to check on the fluid levels and on baby's stomach. Unfortunately the ultrasound showed that the fluid has increased significantly and the baby's stomach is still small. This is not reassuring news. Nothing can be set in stone at this point, since they cannot test for Ellie's specific condition (since she is undiagnosed) but these are soft signs that point to the same issues that Ellie has. The signs of extra fluid and a small stomach could be because the baby is not swallowing well. There is still a possibility that this is all a fluke though too.

As you can imagine, we are quite worried and upset about these findings. It is hard to imagine why this could be happening to us. But we rest in the truth that our God is in control-he will never leave us nor forsake us. All things happen to his glory, and we rest in him.

Please, please pray for mercy on us and our baby. I will try to keep updating, but please keep in mind that it is very difficult to experience these same emotions again that we felt almost 2 years ago with Ellie.

Baby Update

2009-06-23T12:27:00.000-07:00

Well, we still don't know anything more!

The ultrasound today went well, considering. My fluid levels are in the same range as they were the last two times. They have not really increased much. So that is good news. I really wish they would start to decrease, but I'll take what I can get.

The baby's stomach bubble is still about the same size as it has been. It has not grown significantly, but it is still present. So that is good news. I really wish it would just get bigger, but I'll take what I can get with that too.

There were some other positives to the appointment. Baby was very active and the doctor said he is not concerned at all about movement. Of course we are not sure if this means anything or not, as we have no way to objectively know how much Ellie was moving in the womb, but I can tell you she moved less than this baby. He also saw her practicing her breathing. The doctor said that if he had been doing a biophysical profile of the baby (checking her health), she would have passed 8 out of 8 markers (movement, oxygen levels, tone, etc). So that was pleasing news to us.

So, we keep on praying and being patient. Please continue to pray for God's mercy on our family and a healthy blessing.

Ellie's Stander

2009-06-19T01:36:00.000-07:00

Ellie got a stander last week. It is a device that helps her stand upright and put weight on her legs. That is a good thing for bone growth and just to have her body do a normal activity for an almost 2 year old.

She also thinks she's pretty cool when she is in it looking around :)

Ultrasound Update

2009-06-11T02:51:00.000-07:00

We just got home from the ultrasound. Praise God that the fluid levels have stayed the same! They are still in the high normal range. This is an answer to prayer for us, but we can not rest easy yet. There is just no definitive way to know the health of this baby. Please continue to pray for normal fluid levels, lots of movement, and a healthy baby.

Next ultrasound to check fluid is June 23. Please pray that the fluid will have stayed the same or even gotten better.

We thank God for his blessings and trust him with our future-

Moving Day(s) slide show

2009-06-10T13:55:00.000-07:00

Here are some pictures that my friend Kristin took of us moving. Friday night we interrupted our neighbors' Open House (church friends) and everyone from church came over and moved us in! :)

http://s16.photobucket.com/albums/b34/eoster58/moving day/?albumview=slideshow&direction=reverse

Quick Update

2009-06-09T05:32:00.000-07:00

Hey all,

I don't have internet yet, but I'm checking in at my parents :)

We are pretty much all settled in the new house and LOVING it. Thank you to all who helped us move and get the house ready: Mom and Dad and Uncle Bob, Small group, friends from church, Mom and Dad Vedra, etc. We couldn't have done it without you.
I hope to get the pictures up soon, but need my own computer to do that.

We have been spending this week in prayer for our unborn baby. The next ultrasound has been rescheduled for Thursday at 8 am. Please pray for normal results. We can not stress enough how much we need prayer for a healthy baby.

Hugs,

The Vedras

Moving and Baby Update

2009-06-05T01:06:00.000-07:00

We closed on our new house yesterday! We have had the keys since Wednesday (generous sellers) and have started painting and moving some things in. Today we hope to get a lot of painting done, and then tomorrow morning is the BIG MOVE!

We love our new house already. The outdoors is just so beautiful. There are so many shade trees, green grass, flowers, and the boys have already been exploring our "woods." They even found a toad! We are all just ecstatic about this house and it is such a blessing.

The ultrasound yesterday was not as reassuring as we had hoped. My amniotic fluid measured on the "high side of normal." Having extra fluid was really the only big sign that there might have been something wrong with Ellie's pregnancy, and I think repeating that would be the hardest thing to ever go through. Of course, this could just be another "anomaly" or my normal, but there is just no way to know! We go back on next Friday for another ultrasound to keep an eye on the situation.

Please join us in fervent prayer for a healthy baby. We will make our request known to God for he is the one who is in control. We know he will do what is best in his loving providence, but we must also express our deepest desires for a healthy baby. We are praying that next Friday the fluid levels will be absolutely normal and that baby will have a full tummy of fluid.

I am not sure when we will have internet set up at the new house, but I plan to update and post pictures after the move when I can.

Thanks for your thoughts and prayers,
The Vedras

Prayers for this week

2009-06-01T01:46:00.000-07:00

Big week this week for the Vedra Family. We would sure appreciate some prayers.

We are supposed to close on both houses this evening. We found out late last week that there are delays in the bank appraisal on our new house so we might not be able to close today. That could cause delays in moving, when we've already ordered the truck, made plans etc. Please pray that we hear soon that we WILL be able to close tonight!

Ellie is really sick with a fever and diarrhea. She has been lethargic since Friday (pretty much sleeping since then). I was hoping she would wake up better this morning, but she is still really warm and weak and out of it.

Thursday I have a high risk ultrasound. It was around this time in my pregnancy with Ellie that I started to measure large and carry extra fluid. We are going to check fluid levels on Thursday, which could be a clue to the health of this baby.

We are supposed to move on Friday and Saturday. Please pray we get to and that it goes smoothly!

Thanks for your support! I will keep you updated on the status of these things :)

Family gathering

2009-05-26T06:39:00.000-07:00

A couple weeks ago we had the opportunity to get together with my brother Jeff and his family. We had not seen them for several weeks while they adjusted to life as a family of six and the new kids from Ethiopia had a chance to adjust. It was a gorgeous day and the kids had so much fun playing outside!

Meijer Gardens

2009-05-18T08:43:00.000-07:00

Here are the boys with their friend Gabe at Frederik Meijer Gardens on a recent trip. Check out all the turtles in the water!

New House

2009-05-11T06:11:00.000-07:00

Whenever we thought about finding a new house that would work for Ellie and our family, my dreams always involved elaborate schemes, like Extreme Home Makeover or winning the sweepstakes. Instead, God often answers our prayers through normal means, like low interest rates, generous family members, and just the right house at the right time.

With thanksgiving to God, we wanted to tell you that we found a house! We signed the agreement late last week and hope to move the first week of June. The house is really great for us: good location, a ranch with open design, 4 bedrooms, finished basement, a nice big backyard, an extra garage, large bathrooms. We really think this house will work for our family for a long time.

Everything has just gone so smoothly: selling our house quickly, finding a new house, and plans to close on the same day and move directly from our house to the new one. All to be completed before the new baby comes!

Thank you for your prayers. We will keep you updated as moving plans are solidified.

Praise God for his blessings and goodness to us!

SOLD!

2009-04-24T10:19:00.000-07:00

We still can not believe it, but our house sold in a little less than 5 weeks. Today we found out that it passed inspection and is officially sold! God is good and obviously has a plan, because we could not even dream of things moving so quickly and smoothly. Now, we need to find a house! The buyers hope to close on our house by June 1, so we will be out of this house in a little over a month. I really hope the new family loves this house as much as we have :)

We are looking at ranch-style houses in the Wyoming/Grandville area. It seems like the ideal location to us, as it is near our church, the homeschool building, a new developmental center that will be Ellie's school, as well as being near my parents and other friends. We are looking for a house that has room for our growing family, as well as the option to modify for Ellie's needs (ramping and bathroom). Yeah, it sounds exciting to you, but when you know you will be homeless in a month, it is a little nerve-wracking! But so far God has shown us He is in control and has a good and loving plan for our family.

In other news, Ellie went into the hospital this week to have a spinal tap. They took her spinal fluid to test for neurotransmitters and also for a few disorders that show up that way. Some of those disorders are somewhat treatable, so we wanted to rule them out. It actually was not as bad as it sounds. We were really nervous about the procedure, but they ended up doing it without sedation and it took like 15 minutes tops. Ellie had no discomfort after it. So all in all a good experience.

So, we have been super busy with the house and the continuing care for Ellie. Time is just flying by! I am like 22 or 23 weeks pregnant now. Things are going really well. The baby is moving quite a bit and I am always reassured to feel the kicks. I feel fine and am enjoying the changes that pregnancy brings. The boys are excited to move, mostly because all the toys I packed away in the garage will be out and played with once more. But really, they don't seem to be concerned about the moving at all.

We have felt the loving and supportive arms of God through these busy times. He has a plan and we rest in that. Thanks for your continued prayers and we will keep you updated on the house-hunt and eventual moving!

Baby Update

2009-03-31T16:02:00.000-07:00

Today we had the excitement of going in for a detailed ultrasound of the new baby. It was confirmed that we have another GIRL entering our family :)

The ultrasound went really well. Baby girl looks really healthy so far! The doctor seems really optimistic that the baby does not have the same symptoms as Eleanor. He thinks at this point the risk for the baby is really low.

She was moving a round quite a bit and we saw the mouth open and close a couple of times. We also saw her stomach which showed she has been swallowing. That was the most exciting part for me and Adam. We also saw the ankles which look really normal, as opposed to Ellie's "foot drop" which requires her to wear special foot braces.

The only thing to report was a very slight enlargement near her kidneys but it could be a result of an underdeveloped ureter system or something like that that a lot of babies have at this gestation. Doc was not too concerned, and I'm thinking it is one of those things that make people worry that really don't mean anything. We will pray for that issue to resolve.

Thank you for all of your prayers and encouraging comments so far. It really feels great to have the support of our family and friends. We put our trust in the Lord and in his goodness. We are so happy for the gift of another baby girl. We will keep updating as we learn more :)

More News

2009-03-19T01:32:00.000-07:00

Ellie News
We have received all the results from Ellie's recent testing. All negative-Surprise, surprise :) We also got her MRI results which showed that yes, she still has white matter loss, but no, it is not getting progressively worse. It was not a surprise to me or Adam, as we know she is not getting worse, but I think it will be a good piece of information for the doctors. We go to the neurologist next week to go over all the results in detail and make a plan from here.

Ellie also had her first visit to Genetics. They really should have been following her from the beginning, but alas, some things fall through the cracks. We really did not learn anything new at this appointment, but we now have another smart doctor following Ellie's case. The Geneticist has already contacted various colleagues around the US to see if they have any ideas about Ellie's diagnosis. We'll let you know if anyone comes up with anything.

Ellie had a cold the last couple of weeks, and we are very happy to report that she kicked it without any additional meds or even a visit to the doctor! She handled this cold very well and it brings hope to us that she will be able to continue to do that in the future. Yay!

The House
The house is now listed for sale! It was a lot of work getting it ready, but it was very satisfying to see the end product. You can see the listing here. Let us know if you know anyone who may be interested ;)

Other news
In other news, our family is expecting a new addition at the end of August! We are all very excited, but of course a little nervous as well. I am being followed closely by a team of doctors, but we are not sure they will be able to tell us anything, as Ellie's condition is not really detectable by testing. We trust in our good God and in his providence. We know that he has a plan for our lives, one that is for his glory and for our good, no matter the health of this new baby. Please pray for our peace and for this unborn baby.

Family Update

2009-02-27T06:44:00.000-08:00

I'm sorry it has been so long. We have been so busy!

Ellie has been doing great! She has had no major illnesses since the bad respiratory bug she had over Christmas. She has been really alert and smiling a lot and just plain interacting more than ever. She is such a joy to the whole family, and often we will just *have* to stop and kiss her cheeks while going about our daily routines. This past week Ellie went to the hospital for two tests. The first was a kidney test that would tell how well her kidneys are functioning. You may remember her kidney reflux that was causing all of her UTIs this past summer. They caused quite a bit of damage to the right kidney, and this test will tell us sort of a baseline of how well the right kidney is functioning. She also had her first MRI since last year at this time. We are hoping the MRI will tell us more details about the problems with her white matter and myelin in her brain. We will know the results within a week I hope.

The boys have been doing great. Noah and I are still doing school pretty regularly. He is reading easy readers and doing addition in math. We have been learning about animals and the human body, as well as the Greeks and Romans. It has been a fun year so far, but there is still much to be done before Summer.

Seth turned 4 years old last week! He thinks he is 6 and wants to do everything Noah does. They are the best buds and spend hours playing Legos, Playmobil, and anything to do with Star Wars.

Adam has been busy with work and his side business, Fishbone Technology Services. He has also been going to the gym every day during his lunch hour and we are proud of him for meeting his goals.

The whole family has been busy with some other big news: we are going to put our house up for sale this Spring! We of course have been thinking about it off and on since Ellie was born. We live in an older 2 story house that no matter how we look at it will not accommodate Ellie's increasing special needs. After going back and forth on the issue, we really feel like now is the time to try to sell. So, if you know anyone who wants an awesome house in Alger Heights, let us know ;) Also keep your eyes open for ranch-style houses that can be adapted to become barrier-free.

It is a super busy and exciting time for us, and we look with anticipation to the Spring for more exciting things to come. We have a new niece and nephew coming in the next 4-6 weeks home from Ethiopia. My brother and sister-in-law and their 2 children are adding to their family and we can't wait to meet the new children.

So that is the news. We hope you are doing well and please forgive us for not updating sooner.

The Vedras

Ellie Smiles!

2009-02-03T02:51:00.000-08:00

This is truly the most exciting news we have had since we first heard Ellie's voice. It has been a few weeks since we first saw Ellie smile, but it was so infrequent-- and obviously does not look like a "normal" smile-- that we thought we must be kidding ourselves. Now, over the last week or so, she is doing it consistantly, always before bed and sometimes first thing in the morning.

I finally caught it on video for you. The video is a compilation of two occasions-first, in the morning, where the lighting is good but the smile is less large, and then second, before bed, when she is cooing and smiling big, but the lighting is poor.

Enjoy, and praise God with us! There is nothing like a baby's smile!

Cleveland II

2009-01-31T11:34:00.000-08:00

We had a great time as a family on our adventure to Cleveland. The boys are great travelers in the car, and Ellie did great too. The trip takes around 5 hours. The way there took more like 6 because of the weather. The roads near Cleveland were really bad, and at more than one point I worried that we would not make it in time for the appointment! But we did, just in time.

The boys were well-behaved in the doctor's office. The appointment took 2.5 hours! But the doctor complimented them on their patience. We were very proud of them, especially after riding 6 hours in the car and no lunch.

After the appointment we headed to the Holiday Inn. It was a really nice place to stay. It was quite empty and the staff was very nice. We had the pool to ourselves the entire time, including the hot tub. In the morning we ate at the hotel restaurant at what turned out to be a free breakfast buffet! We had time in the morning before packing up and leaving to enjoy the pool again. The boys really enjoyed our "vacation."

Cleveland Update

2009-01-30T10:23:00.000-08:00

We just got home from another visit to the Cleveland Clinic to see yet another doctor, Dr. P. in hopes of getting a diagnosis. Dr. P was very helpful, and we were quite impressed!

It is hard to explain everything about Ellie's condition on the blog, but if you are interested in hearing all the details, please ask and I will explain to the best of my ability!

Dr. P agrees with what we know so far: that Ellie's has a problem with her myelin. The purpose of the myelin is insulation around the nerves to increase the speed and prevent interference of the impulses. We already know that Ellie is receiving impulses at about half the speed of a normal child her age. We know she has a problem with the myelin.

Dr. P also gave us a nice little talk on DNA and how the researchers look at it. Unfortunately there are no tests that can quickly look at all the DNA and look for the problem. But, there is a test that looks at a pretty significant chunk to see if there is anything missing or added to the sequence. For some reason Ellie has not had this test, so that is the first order of business. Dr. P thinks that Ellie has a mutation somewhere in her DNA, it is just a question of where. It is also a question of whether she got that mutation from me and Adam, or whether it was a spontaneous mutation.

Dr. P has a chart of all the likely tests that could be run and he crossed off the ones we had already done. He definitely spoke my language! He was so organized and was able to spell out everything we had done in a clear way that no doctor had done yet LOL! So, we have a few other tests that had been overlooked that we should run just as a matter of course. He did not think any of them were actually that probable, but they should be run just so that we can check them off.

So basically what I am trying to say is that we now have a clear and logical path in our testing. No more shots in the dark so to speak. We will start with the new DNA test. We also may be repeating her MRI, along with some other testing.

Another piece of news is that Ellie's local docs are all meeting next Friday to talk about one thing: Ellie! They are going to brainstorm and talk about a course of action for our girl. So things are definitely moving forward!

We still do not know much about our mystery girl, except that she is a gift from God and a blessing to everyone she comes across.

New Videos

2009-01-17T06:22:00.000-08:00

I wanted to share some new videos with you. Ellie has been vocalizing a lot lately. We continue to be amazed by her voice and so thankful for her Passy-Muir valve.

This first one shows how she is experimenting a little with different sounds. Sorry it is so shaky, I was holding her in one arm and the camera in the other.

This next video is of Ellie crying. We used to think that Ellie really did not ever cry hard. It turns out we never knew since she makes so little facial expression and before we had her Passy-Muir valve we could not hear her. It still amazes me to hear her cry, and we might be a little too excited to hear her cry sometimes!

New Bath Seat

2009-01-06T09:56:00.000-08:00

The long awaited bath seat arrived last week! There is nothing like a long bath to clean the "sickness" off of you after you are feeling better! I think this will be very useful with Ellie. I might be able to bathe her by myself now.

oh, and we're all feeling great now. Thanks for your nice comments and prayers!

Things are Looking Up

2008-12-29T11:33:00.000-08:00

I think we have turned the corner here. Ellie is finally awake and her breathing is doing great now. She is pretty much off the O2 and getting back to normal.

The rest of the family is starting to shape up. Seth and I were hit the hardest. Seth's stomach flu lasted off and on about a week and he had fevers too. I think I ended up with the flu and was in bed for the better part of five days. I have not been this sick in 10 years!

Adam did a great job taking care of all of us, including doing the majority of Ellie's care both day and night!
[caption id="attachment_247" align="alignnone" width="400" caption="Ellie sick on Christmas Eve"][/caption]
[caption id="attachment_248" align="alignnone" width="400" caption="Ellie is feeling better and awake!"][/caption]
[caption id="attachment_249" align="alignnone" width="400" caption="Ellie and the guy who nursed her back to health"][/caption]

Check out Adam's new glasses :)

Prayers Needed

2008-12-26T15:52:00.000-08:00

Well, we have had a pretty rough Christmas so far. We have all been sick in one way, or more than one. Some of the complaints have been: stomach flu, fever/chills, headache, eye pain, ear ache, etc.

Ellie is bearing the brunt of it. She has had pretty much all the symptoms above, including respiratory distress too. She has had moments where we really thought she was coming out of it, only to get worse.

We took her into the doctor (again!) today and are really trying some last attempts at pulling her out of this before we need to be admitted. We gave her a dose of steroids and an antibiotic shot today. Please pray that these drugs are effective and things begin to improve. Otherwise we will have no choice but to head into the hospital.

Thanks.

Ellie's Friend

2008-12-16T05:48:00.000-08:00

Ellie has a new friend. Her first dolly. I think it is the perfect companion for her. The baby is soft and cuddly. It is also weighted. The weight will offer comfort and stimulation. The weight can also offer support.

Ellie was blessed with this special friend from a very kind and generous woman who heard her story. God continues to bless us with the kindness of others. Ellie's story continues to be told.

Pictures

2008-12-11T09:40:00.000-08:00

Check out pictures from Thanksgiving on my sister's blog

Pictures

2008-12-07T13:55:00.000-08:00

More photos here:

My Helpers

2008-12-01T08:34:00.000-08:00

"What great helpers you have!" is a common comment I get when I am out alone with the kids. And it's true: I could not get much accomplished without the help of the boys, especially Noah.

Today I went out to Costco with the kids to do a major grocery trip. I pull up into the handicapped spot and Noah helps Seth out of his carseat. Then Noah pushes Ellie in her wheelchair, while I push the cart and keep an eye on Seth. We always have to look at the toys first. And then the movies. Finally, we get down to business and quickly fill up the cart, Noah pushing Ellie along, with frequent stops to kiss her. We have to stop for lots of free samples, but Noah has gotten good at eating while pushing Ellie's chair. As we reach the checkouts, I am panicked to hear that Seth has to go to the bathroom. Thank goodness for Noah! He brings Seth to the bathroom while Ellie and I check out the groceries. Now it's time to get our treat: lunch at the food court. I push the cart full of groceries to a table, where the boys sit down and keep an eye on things. Ellie and I go stand in line and order our lunch. After all the food is accumulated, I catch Noah's eye and wave him up to the counter to help me carry the food while I push Ellie back to the table. Now it is time to feed Ellie her lunch. Noah runs to get me some napkins while I push in Ellie's food. After lunch, we head back to the van, where I load up Ellie and Noah helps me load the groceries. Another successful shopping trip! I could not have done it alone!

Ellie's Diet

2008-11-25T12:27:00.000-08:00

Here is the post I promised about Ellie's diet. Many of you have seen the green bottles of food we are feeding Ellie and have inquired about what she is eating.

When we were leaving the hospital, we asked them what we would feed Ellie after she was weaned off of breastmilk. (I couldn't envision pumping forever for Ellie!) They told us she would get a formula like pediasure for the rest of her life. I wasn't satisfied with that answer, so I started researching different options. I found a group of people online who were giving their children a blenderized diet of whole foods, and I knew that was what I wanted to do too. Why couldn't Ellie eat a diet of whole foods like the rest of us?

Ellie was slowly introduced to solids at around a year with yogurt and bananas. After I got a dietician on board with my plan, we introduced more foods over the last 2-3 months to where she is now-at her goal diet. As far as I can tell, Ellie is one of the first children in Grand Rapids to eat a blenderized diet through her tube--we love being the guinea pig :) Ellie is doing great on her diet and growing like a weed. If you have any other questions, feel free to ask.

Here is how I make her food:
[caption id="attachment_224" align="alignnone" width="400" caption="The cast of characters"][/caption]

fresh ingredients:
1/2 cup yogurt
2 Tbsp left over oatmeal
1 Tbsp flax seed
2 Tbsp wheat germ
30 grams raw spinach
1 Tbsp baby prunes

frozen in ice cube trays:
1 Tbsp banana
2 Tbsp pear
2 Tbsp chicken
2 Tbsp sweet potato
1 Tbsp avocado

Place the above ingredients in blender along with 12 ounces water.

Blend on high.

Add a total of 12 ounces of milk. Ellie gets 50/50 whole milk and breastmilk.

I add two multidophilus capsules and some salt and a multivitamin.

Blend again, then divide into Ellie's 5 meals. Each meal she gets the same amount of food.

Our little organic baby :)

Additional Resources:
http://www.mealtimenotions.com/HomemadeBlendedFormulaHandbook.htm
http://www.blenderizeddiet.com/

Ellie Update

2008-11-24T05:55:00.000-08:00

I am amazed to look back at the calendar and see that we made it through the entire month of November without any doctor appointments for Ellie! That has to be a record, and it is a blessing from God that she is doing so well.

We will more than make up for it the first weeks of December, though ;) Starting Dec 1, we will be seeing the Pulmonologist, a *new* Ear, Nose, Throat doctor, an Audiologist, a *new* neurologist, and the eye doctor over the course of two weeks. It will be exciting to meet the new doctors and catch up with old ones and see how Ellie is doing through their eyes.

I did receive word that Ellie's nerve biopsy was officially unsuccessful. The doctor had sent some tissue off to Mayo to see if by some chance he had gotten anything worthwhile, but no, there was nothing there to test.

Otherwise, Ellie is doing well. She is still dealing with her never-ending battle with congestion, but it is merely an inconvenience. She is growing like a weed, weighing nearly 23 lbs. I plan to do a post about her blenderized diet soon, as people often ask about it. I am always willing to talk about how well Ellie is eating! It is one way that I can take care of Ellie in a semi-normal way :)

We are excited for a holiday week. Thanksgiving day starts with Adam running the Turkey Trot at Calvin at 8 am! Then we will be off to my family for an early dinner. After that we will jump in the car and head to Chicago for a few days! Please pray for safety and health over the holidays. I will be praying for all of you as well.

resting in Christ,
Emily and family