Arrangements

Today we emerged from our home while figuratively and literally stretching our legs and shielding our eyes after the long weeks behind us. We were able to go to the funeral home to make our arrangements, which are below. Tomorrow we get to go see Henryk, and get him dressed for the visitation on Wednesday. We have a visitation Wednesday, funeral, visitation, and burial Thursday, and reception next week Sunday in Howards Grove, WI. Thank you so much for supporting us today with your kind condolences.

Wednesday January 9
What: Visitation
When: 1pm-3pm
Where: Washburn McReavy Nokomis Park Chapel, 1838 E. Minnehaha Pkwy, Minneapolis, MN

Thursday January 10
What: Visitation and funeral
When: 9am visitation with 10am funeral (lunch to follow)
Where: Bethlehem Baptist Church Downtown Campus, 720 13th Ave S, Minneapolis, MN

Thursday January 10
What: Burial
When: 4pm (meet at the chapel in Marathon, WI, at 3:30)
Where: St. Mary’s Cemetery 301 Walnut St., Marathon, WI (chapel address)

Sunday January 20
What: Reception
When: 1pm-3pm
Where: Zimmer Westview Funeral Home, W2132 Garton Rd, Howards Grove, WI

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Gone Away

Henryk died yesterday afternoon at 2:54pm, Sunday, January 6, 2013. He was 5 months and 10 days old. It was very peaceful, almost ordinary. After a day full of perfectly-timed good-byes he just breathed and then didn’t breathe again. He looked so beautiful, his skin like porcelain.

We gave him a bath, took out his PICC line, snuggled and cried a lot, and got Lily up from her rest time to tell her. Then at 7:30 the funeral home came. Michael carried our little boy’s little body out to the car and they took him away.

Death wouldn’t be so hard if it didn’t mean going away. His sweet presence is gone leaving memories that are all encompassing. Our empty arms are full of pain, though there is real peace believing that his presence is in heaven.

Please pray for Lily. She is so confused. Her third birthday is this Saturday.

A Lovely Holiday

It has been over three weeks since we last gave an update. Little Henryk continues to get more sick, when we thought more sick was not possible. We now look back at pictures where we initially thought he looked so sick and think he looked pretty good compared to now. His sweet little body is mostly protruding bones.  His temperature is 95 degrees, pulse is 80, and he breathes 12 times a minute.

Although his form continues to distort he is so clearly and wonderfully the same boy. We continue to adore his content temperament and cute cry as he registers his complaints. We gaze on each of his parts and attribute them to one of us…he has Michael’s long fingers, Emily’s ears, Michael’s nose and mouth, Emily’s eyelashes, Michael’s eye color, Emily’s eye shape. And the whole package of those parts still looks so like his sister.

There are still many questions. We continue to be in a state of confusion about most aspects of his life. Now is no different. There have been scores of times when we have thought he breathed his last breath. Even our hospice nurse has told us that she on multiple accounts left our house thinking there would be no need to come back. It is strange to wait for death to come when it is an unwanted visitor. It really is the only relief to be offered to Henryk though, and although it is a wretched relief for us, there will be no wretchedness in it for him.

We have had a lovely holiday season. We had special time with close friends and both sets of our parents came to us to celebrate Christmas. They have made all of our holidays this year possible. We had a delightful New Year just the four of us.

Dec 6-25 2012 080

Lily getting ready to go outside and help Dad shovel

Lily getting ready to go outside and help Dad shovel

Mom and Dad helping Lily on the cash register

Mom and Dad helping Lily on the cash register

Bette (aka "Grammy", Michael's Mom) and Emily

Bette (aka “Grammy”, Michael’s Mom) and Emily

Lindsey and Lily

Lindsey and Lily

Dec 6-25 2012 078

Lily and B (Emily's Dad)

Lily and B (Emily’s Dad)

Megan and David Mathis holding Henryk with his Christmas gift ornament (Baby's First Christmas)

Megan and David Mathis holding Henryk with his Christmas gift ornament (Baby’s First Christmas)

Lily and Annie working on the Gingerbread House

Lily and Annie working on the Gingerbread House

Dec 6-25 2012 104

Dec 6-25 2012 147

Coleman Mathis really excited about his "Cars" sticker book

Coleman Mathis really excited about his “Cars” sticker book

Carson (left) and David (right) focusing on their own "Cars" sticker book

Carson (left) and David (right) focusing on their own “Cars” sticker book

Henryk - Dec 30, 2012

Henryk – Dec 30, 2012

Dec 28, 2012 - Lily was playing with Henryk and left him one of her Thomas Trains and some stickers

Dec 28, 2012 – Lily was playing with Henryk and left him one of her Thomas Trains and some stickers

Holding Him

It has been over four weeks since Henryk’s condition changed. Sometimes, when it is just us at home, we can almost see a glimpse of normal. Like maybe this isn’t actually happening. Maybe we will just go on like this for the rest of our lives. We just had to adjust a little and find a new normal and now that we have done so our lives will be like this. But mostly that’s because we are holding him.

As long as I am holding him, I only see his little face and hear his breath on my neck and feel the soft skin of his cheeks. But when Michael is holding him and I leave the room and come back in, I see the reality of the situation, the whole picture, and remember the daily log of his eating and medicine that I keep that says he ate an ounce today and wanted less than that yesterday. I remember that only a few nights ago he only breathed once every three minutes for over two hours. That brings on other times.

There are other times when we feel like we are sliding down the edge of a gravelly cliff. And even though we know we are falling, and there is nothing we can do about it, we keep scraping and clawing at the rock with our hands and feet. Or like losing weight. Our bodies are programmed to eat the number of calories that will maintain our weight. That is why we get so hungry when we try to lose weight – it is against our natural instincts. What is happening is against every fiber of our beings. But there is nothing to do but love him and let what will be happen.

I went out to Target today. After circling the full pre-Christmas parking lot, finding a spot, and making my way in to the store, I found myself unable to concentrate on what I was doing. This has happened many times since we found that about Henryk in April. Once I went to the grocery store for a full week’s grocery run and came home with only two boxes of Kix and some frozen potatoes. And tonight was worse since I hadn’t left the house since Tuesday. Even with the hustle and bustle, I felt myself yearning to explain myself to every person I came across. The need to stop them and tell them that no, who they see isn’t actually who I am. This isn’t the full story. Half of me is at home laying on the couch with Daddy.

I had horrible nightmares all night long last night. However even in the dark of a scary night, God is with me. We will never, at least in this life, know why this is happening. Although it would make it easier to know why, we simply will not. Luckily there is comfort beyond an explanation. There is comfort in knowing that God loved us so much that he sent his son so that our names are written in heaven. Jesus came and suffered perfectly so that we might survive our suffering. He endured terrible circumstances so that our lives do not depend on ours. Jesus’ death and resurrection so that God looks on us and sees his perfection rather than our sin produces a life beyond even the most horrible circumstances. And in this we will rejoice.

Happy Birthday Mama!

Mama and H snuggling this morning

Mama and H snuggling this morning

(L-to-R: Jenny, Lily, Lindsey, Henryk, Emily, Megan, and Samm) Some special friends in our lives that brought lunch and gifts to celebrate Emily's birthday.

(L-to-R: Jenny, Lily, Lindsey, Henryk, Emily, Megan, and Samm) Some special friends in our lives that brought lunch and gifts to celebrate Emily’s birthday.

Emily opening some birthday presents, and Grandma Ann sneaking some snuggles with Henryk

Emily opening some birthday presents, and Grandma Ann sneaking some snuggles with Henryk

A Family of Four

A Family of Four

Father and Son

Father and Son

Grandpa Ben and Lily

Grandpa Ben and Lily

Declining

We thought it might be time for a short update. Henryk has made it clear that his body is declining, seemingly simply due to his condition, not any decision path we did or did not take. He is not eating anymore, by nursing or bottle, he cannot close his eyes anymore, he is quite stiff, and he has regular apnea episodes. Moving him is very hard on him so we have made our post on the couch. The two of us take turns holding him around the clock, with me taking the majority of the day while Michael works, Michael taking evenings, and each of us a few hours at a time at night. We started him on IV pain meds through his PICC line which has been incredible in keeping him comfortable.

It is an honor to care for him. To do everything we can for him is a high calling, and we appreciate the gift of the opportunity to do it to the best of our ability. We have not left the house or slept in bed in days and we do not care. We are soaking up the chance to spend time as a family and it is a blessing.

Much of the time we are able to remember the truth. We are able to remember all of you who have said you are praying for us. It is like a shield of protection is around this house boarding a slowly passing boy. It is sad to behold but even for this there is grace. God does not put you on a path like this and then leave you.

Altered

Last time we wrote was Thursday. We had learned that day that we were scheduled for surgery to replace Henryk’s shunt today (Wednesday). We also noted that Henryk started vomiting on Thursday, likely due to pressure in his head. We called the neurosurgeon about this on Friday to see what we could do and he said that the sickness would make moving up the surgery unfavorable. To do an emergency surgery in this situation is dangerous.

As the days go on, Henryk continues to vomit and occasionally pause breathing. We did some lab work that came back good enough for the surgeon to say he would operate today, but Henryk is just so frail we decided not to do it. If something would happen during or just after surgery it would be a sad way for him to go. We will just have to see what Henryk does moving forward. If he somehow gets better and starts eating again we will do the surgery later.

Other than surgery the only medical route to go for him would be to give him IV fluids. But this is not a long term solution, and in fact can be quite uncomfortable. If the body is truly shutting down it does not want that fluid, so it can go places it doesn’t belong like the lungs or extremities.

Death in this manner (loss of appetite) for babies can be a slow process.  Like a flower dying, they just kind of turn in on themselves and slow down. But it is not an uncomfortable way to go and we have plenty of medicine to soothe him.

This has been very mind twisting for us and has caused us to really face our fears about Henryk. We have realized we are terrified of the coming grief and do not want to feel like we are letting him go. One thing we did which has helped us greatly is some in-depth Bible study and research on what happens to babies when they pass.  This was to deepen our convictions together as parents for our child.  Based on various scriptures and articles we have read we conclude that due to Jesus’ grace bought on the cross Henryk will go to heaven when he dies. So if we truly believe what we say we believe, we trust that Henryk will be better off with Jesus than with us. Hard for parents to grasp.

Since we found out about Henryks problems seven months ago, God has not given us any of the circumstances we have prayed for. In fact, quite the opposite and then worse. Every time we have said, “Please God, as long as …… doesn’t happen,” that thing has happened.

However, that is not the complete picture. God has answered every prayer for wisdom with conviction. He has answered every cry of, “We can’t do this anymore,” with grace. He has given us direction for Henryk’s little life so that we do not have questions or regrets about our part in the turns it has taken. And as we were praying about this very thing the other night we realized that’s quite an amazing life for him to be given. And it’s quite a gift to his caretakers. God has helped us continue to walk by faith and deepen that faith in profound ways we never thought possible.

So today instead of surgery we celebrated Christmas. We really wanted to make sure Lily has memories of Chistmas with Henryk. Yesterday we decorated the tree. This morning we made a trail of marshmallows from Lily’s bed to the tree (she thought it was snowing inside) and had them both open gifts (or rather had Lily open gifts for both of them). We got Henryk a Baby’s First Christmas ornament and re-gave him some of the special gifts that our friends have given him.

Pastor John Piper said recently at the Desiring God Disability Conference that I thought was helpful as we face this grief with Henryk: “God is always doing ten thousand things that you do not know about. You may know three of them.”

http://www.desiringgod.org/blog/posts/now-available-disability-conference-audio-and-video

A passage that has been helpful to us these past days is Psalm 34:17-18:

When the righteous cry for help, the LORD hears
  and delivers them out of all their troubles.
 The LORD is near to the brokenhearted
  and saves the crushed in spirit.

Henryk with the Hat

We saw the neurosurgeon today. We have surgery to place a new shunt on Wednesday. No real news. Just that he thinks this is the best thing to do. We agree.

Henryk started vomiting this morning. We are hoping some Zofran will help as it seems to be motion related. That probably is due to nausea from extra pressure. His head has really grown the past week, almost back up to the size it was before his shunt. It actually is now a little bigger than our neurosurgery nurse practitioner’s head. Ironic. Would be pretty funny if it wasn’t so sad. Still is a little funny anyway.

We are preparing for Thanksgiving in the hospital. We will be ok with it. Memories will be made. We had been hoping to spend an extended time (2 weeks) in Wisconsin with our families during this time as Thanksgiving is always particularly nice between deer hunting and tree decorating and baking. But I’m hoping to order a dinner from our grocery store and maybe even muster up a pumpkin crunch cake which is so good it needs to be a tradition.

We also hope to get an exemption to bring Lily up to see Henryk while he is there. (This time of year no children under 5 are allowed in the hospital.) Last visit I saw a child life specialist who recommended putting some pictures of the hospital in a book to show her. I decided to write a little story to go with it. I named it “Henryk with the Hat.” Lily loves this story and I think it has actually been quite helpful for her. Here’s the story:

Henryk with the Hat

Dear Lily,
I made this book for you on November 8, 2012, an incredibly difficult time in our lives. But Lily you have been and always will be my shining star.
Love,
Mama

This is Lily. She is a sweet girl with a little brother.

Lily’s brother’s name is Henryk. He likes to wear hats. Right now Henryk is sick. It is a different kind of sick that means sometimes he has to be in the hospital instead of at home.

The hospital is a place where lots of nice doctors and nurses can take care of Henryk and keep him happy.

When we go to the hospital we park in the ramp. We walk past the store and over the street in the skyway. We walk through the lobby and check in at the desk.

Then we take the elevator up to the 6th floor. We walk down the hall into Henryks room.

This is Henryks room. He has his own bassinet in his room. He has a picture of Lily and Mama and Daddy in his bassinet. He has a lion blanket just like Lily does!

Since Henryk is a different kind of sick, when he is in the hospital Mama has to be there a lot to hold him.

She sits in this chair and feeds Henryk his special milk. Mama always thinks about Lily while she is with Henryk.

Henryk gets medicine in the hospital. He gets it through special tubes in his arm.

Lily is a big girl and sometimes gets to visit Henryk in the hospital. She even brings him things he needs like his turtle that matches hers at home.

While Lily visits Henryk she gets to read books with Mama, color, and pretend to be one of Henryk’s doctors.

Lily is a very good big sister. Henryk loves her very much. He misses her when he has to be at the hospital.

Brief Update

It is hard to know where to start with giving an update. So much has happened since we last wrote, and many things that would have been relevant and significant to include along the way have now dropped to the side as “yesterday’s information.”

But for a start we are home.  We were in the hospital for 10 days and came home this past Friday. In the hospital, after Henryk’s shunt was removed, we met with an infectious disease doctor. He told us that this is a very common bacteria effectively treated with IV antibiotics. We were able to have a surgery to put a PICC line in Henryk’s arm. This is a permanent IV so that we are able to administer the drug to him at home safely for the duration, which is until November 21.  This was no small victory as there is about a 50/50 success rate in getting these lines into infant arms. Good thing we have a big boy.  So, we are at home treating the infection with IV antibiotics.

While we were in the hospital, the plan was to get the infection under control with the antibiotics and then put in the next shunt before coming home. This was not possible, however, because it turns out that surgery to remove the shunt caused a quick decrease in pressure in Henryk’s brain (likely due to spinal fluid lost in surgery) which caused his brain to separate from his skull resulting in bleeding.  Further surgery would have caused him to bleed more and been dangerous for him.  As it was his hemoglobin swiftly dropped and some of his blood work was off.  This created some daily setbacks as the journey continued.

So instead of putting in the second shunt, once things stabilized, we were able to come home.  We have an appointment with our neurosurgeon on Thursday to discuss timing of the next shunt. We anticipate next week. We are apprehensive to think about going back to the hospital and scared about more surgery. Just not good memories for us although our care has been fantastic.

Now that we have had a crash course in many things bad about shunts, it has been hard not to question putting in the next one.  Our infectious disease doctor is 70 years old and had an interesting perspective. This doctor, because of his years of experience, used to treat patients with hydrocephalus who were not shunted becase shunt technology had not been developed yet. He told us these children’s heads would get progressively larger, even to 120cm (Henryk’s was 53cm going in to shunt surgery). It made for hard days for them and care was “impossible.” It was interesting to hear this from someone who actually knows and has seen it, rather than merely understands the concept but has not lived the theory.

Another interesting point was from our neurosurgeon. When he came to see us he said that he was very surprised by this infection and that he had not had one in a very long time. Since he had said that multiple times before, I had to ask him to quantify “a very long time.” He said that he has not had this type of infection since 2003.  2003! He does this every day.  It is clear to us that God is in control, even of bacteria, and Henryk’s unique journey continues to unfold.

So with all that said, we have been getting asked lately how we’re doing. Honestly, the answer is, “We don’t know.”  It has just been so much for us.  Right now, we are happy that Henryk is calming down and feeling better. We are happy to be home playing with Lily.  We have no capacity other than to care for these kids and have Michael work. But for now thats where our focus needs to be. We are learning that trials produce steadfastness of faith not because you do anything specific in them but simply because at the end you still believe. You still trust God and hope in Him. That means you persevered. So we are praying for this perseverance, because that in and of itself is a grace from God.  We know God is faithful, even in suffering.

Romans 5:1-5 “Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”