Just a typical day...

Bathroom Project

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

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

Hot-tubbing

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

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

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

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

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

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

Smiling Girl

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!

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

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

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

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!

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

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

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

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

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

Thanks Kristin :)

Surgery went well

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

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

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?

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.