The Beginning of the Afterword

Joel - This is long, but check out Renee's from June 25th.

“For the Lord will not cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love for he does not willingly afflict or grieve the children of men.” Lamentations 3:31-33
When we left the Children’s Hospital for the last time, the day of Emily’s death, the sky was turning black and fierce. Lightning ripped through the night as we sped down the freeway in the rain. The thought came to me: “God is angry.” He was angry at all the evil, sickness and death that plague this world - and killed our daughter.
I know the weather is not a good indication of God’s mood, but the storm served to teach me something valuable. The lines between darkness and light, good and evil became a little more distinct for me that night, and I knew I wanted to be completely in the light. It was evil and darkness that killed Emily Grace. A defect. Something less than perfect. God is life. Death came about because of sin. He hates death and will defeat it totally in the end. But even now, while He is angry at evil and death, He is also still in control. He allowed Emily to die, because he has a greater good in store. He is taking the attempts made by the powers of darkness to tear us away from him, and turning it all to eternal good. He grieves with us and walks with us to that light on the other side.
“If God hates evil so fiercely why doesn’t he do something about it?” the world asks. He did. Into a world boiling with hatred between men and hatred toward God, God himself stepped in to exact justice. But instead of condemning all of us Jesus said, “Let your punishment wound me, let your death penalty crucify me instead.” All the fury of evil is turned on him, with the pained permission of the Father, and he dies in our place. For all of us. Anybody who for a moment has rebelled against a perfect God by not honoring him above all else.
And on the other side of the cross we find LIFE, LIGHT – the strands of evil and darkness lose their grip on Jesus. And their power is broken over us who surrender ourselves completely to his authority and love. We walk in new life. We are not bound by darkness. Our bodies may die as we carry on in this world that still has death because people still reject Jesus. But after physical death we will live in light. You can’t stay dead in the presence of Jesus. And you can’t live in the presence of God without Jesus.
Back to Emily. We miss her like crazy. It feels like loneliness, or being terribly homesick. It’s hard to be home without her, returning to the activities that were normal before. There’s always someone missing from our family. It’s hard to not have seen her whole face or been able to hold her close until after her spirit had left her. What would I give to smell her sweet head again? Or to let her little hand wrap around my fingers? Would I put her back on the ventilator? Put the IV’s and catheters back in? No, I wouldn’t. She’s been spared a lot of pain. It helps to see her in heaven in our minds. She’s not the same as the pictures. She’s free now. No more IV’s and catheters. Thank-you God for your overwhelming grace.
The funeral two Sunday’s ago was awesome. Over 100 people came. We laughed and cried and saw pictures of Emily and worshiped God. My (Joel’s) Mom and I led the songs. We all gave it our all and God ran with it. I think he was glorified and that Emily couldn’t stop smiling. We realized she is a prophet, calling us to repentance and consecration. Pray that we can live out the example we gave at the funeral, in our everyday lives.
God gave Renee the grace to go visit a friend and her week-old son today (June 20th, when I originally wrote this)
We are doing well, but are not so strong as to forget for very long our desperate need for Jesus’ life in us. We grieve when the grieving comes, but don’t go looking for it. Well, OK, sometimes I like to go smell the hat she wore in the hospital.
We’ve got some incredible friends here. They’ve cared for our emotions, our physical needs and our souls. The broader community, church, extended family, blog readers and even people we’ve never met or known about continue to show support.
So – thank-you – we are blessed to the point that we’re not sure how to respond.
Grace, Joel.
PS – A ‘For Sale’ sign went up on the place we are renting today. We need prayer for wisdom on what to do next. God’s arranged everything thus far, but we just need to know when we are following him or not. Thanks.

A Time to Mourn

thoughts from Renee

‘I have no greater joy than to hear that my children are walking in the truth.” (3 John) This is my hope and dream for all of my children. Emily Grace is with Jesus, she is walking in the truth and with the Truth. I do not yet have the joy. Maybe it’s there underneath all the sadness, emptiness and feelings of being lost. But I know I will have joy again. And I know I will worship Jesus alongside Emily. Someday.

There is a time for everything, and a season for every activity under heaven:

A time to be born and a time to die,
A time to plant and a time to uproot,
A time to kill and a time to heal,
A time to weep and a time to laugh,
A time to mourn and a time to dance,
A time to embrace and a time to refrain,
A time to search and a time to give up,
A time to be silent and a time to speak…

Funeral Announcement

The funeral/celebration service for Emily Grace will be this coming Sunday, June 15, 3:00pm at the ___________ Church. We welcome anyone who wants to be there. If anyone needs directions you can email us at __________. Blessings, Joel.

Good-bye Emily Grace

We love you. You came through surgery yesterday, but this morning your heart gave out. We watched you drift away under the hands of the doctors and nurses who crowded your room. We wept at your departure, sliding our hands under your lifeless body. Jesus holds you now. We finally got to see your face and hold you close, but the warmth had left you. For hours we held you and let the waves of grief crash over us. Don't worry - we still believe in the One into whose face you gaze. He never left us either. We came back in the evening with your brother and sister and grandmother. I know it sounds crazy but we drove around the hospital seven times, singing praises, preparing to petition for your life again. We know Jesus could have restored your life - He knows how. We asked him to, but in the end we had to let you go and say good-bye. We love you. You are beautiful. We'll see you again someday.

successful surgery

This is Joel writing. Thankyou to the hundreds and hundreds of people who were praying today. God chose not to do what a lot of us were praying for - heal Emily without surgery. We don't know why - he certainly can and does heal in this day and age, even in this part of the world. But He must have something bigger in mind. He is good. He is loving. And Emily came through surgery with much Grace! She now has a 2.5 cm (1 inch) Gore-tex shunt going from a branch in her aorta to her pulmonary artery. (No I didn't ask the surgeon if he had a spare shunt in his pocket for me to take home.) She is getting blood to the lungs and looking good.
After she was prepped for surgery this morning, just before they wheeled her off, Emily opened her eyes and looked right into ours. I felt like she was saying, "I'm going to be OK Mom and Dad." Looking for confirmation of the profound moment I asked Renee what she thought. She said it looked like she was screaming out, "Mommy - get me out of here!" Oh well.
Renee waited in the family waiting room while I drove back home to play football with Joshua for an hour like I had promised him I would. He is praying too that Emily would not be sick any more. Rachel is as sweet as ever.
Emily will be quite unconcious until sometime tomorrow, but all her stats are doing well. They will continue to drop dosages of the numerous medications and work toward getting her off the ventilator and being able to take breastmilk.
Thankyou again for praying.

Surgery

Renee just called me about a half-hour ago with an update. They will be able to post more details later this evening, but wanted everyone to know as soon as possible.

Emily was in surgery for about 3 hours while they installed a shunt in her heart. The surgery went well and she is now recovering.

I am sure they appreciate your prayers.

James, for Joel and Renee.

Tears

Joel and Renee don't have access to the blog right now, but they have asked me to post this:

They decided not to do another ECHO. They were putting an IV in Emily's neck when we arrived, but we couldn't watch. She's still scheduled for noon but may not actually have surgery until 1 or 2.

Please pray! For what happened yesterday, see here

James for Joel and Renee

.Blue eyes.

So as you can see from the title, the highlight of today was Emily staying awake for 45 minutes. We haven't seen her open her eyes like this since her first day out of the womb. Just wrong timing I guess, because the nurses say she opens her eyes quite a bit (at night). She has blue eyes and can sort of focus on certain objects close to her face, like Mama! and Daddy!
Clyde and Pat (our host and new extended family!) came to see Emily today also.
This morning, being Sunday and all, we went to church. Joshua and Rachel came with us, which was so nice to spend the morning with them as a family. We went to Common Ground Church located in Lake Elmo. What beautiful people! They welcomed us in and prayed for us and it felt so much like family. We were invited over for lunch at one of the elder's house and was able to meet and talk to a few more people.
Back to Emily...there seems to be some disagreement between the doctor and the surgeon about taking Emily off of the prostaglandin that keeps her heart open for more oxygen flow. Tomorrow we shall see what they agreed to do. Joel and I really want to give Emily another chance, to see if she can make it on her own without surgery.
Well, I hope all that makes sense. Thank you so much for all your prayers, for checking our blog and wanting to keep up on little Emily Grace. We will post more pictures and maybe even a video once we get the opportunity.

Good news

Well, Emily is scheduled for surgery on Tuesday afternoon. But (!) they are going to try once more taking her off the prostoglandins. Monday morning she will get another chance to avoid surgery. Of course that's what we're praying for.
Today we took the kids to the Como zoo and for a picnic bef0re going to see Emily. Renee's mom got to come with. The kids got to enjoy the excellent Sibling Play Area at the hospital while Renee and I got to hold Emily! That was wonderful, despite all her attachments and adornments!
Blessings, Joel.

Consecration

This morning Emily was taken off prostoglandin, the medication that keeps open the bypass from the arterial arch on the left side of her heart to the pulmonary artery on the right that takes the blood to the lungs. That bypass or ductus normally closes within a few days of birth. Throughout the day her oxygen saturation levels were monitered. If they fell below seventy percent there would be cause for concern. They dropped from the mid-nineties to mid-seventies over the course of the day, but seemed to be averaging seventy-five when we left her at 10pm. It was hard to see those numbers drop. She is so beautiful, and getting more so everyday. I had to remember that we don't have faith in God because he fixes all our earthly problems. We have faith in him because he has called us back to what we are created to be - godly. He has saved us from worldly, sinful, selfish living through the death of Jesus, dying where we deserved to die. Renee was reading the end of the book of Job tonight. We have come to know, like Job did, that this is all a part of a bigger plan, most of which we can't comprehend. What we do know is that everything is created through Jesus, and for Jesus. In the end everything will glorify Jesus. I don't know what the end of this story with Emily will be. But tonight God showed me that nothing else matters except that I surrender every part of my life to the authority and power of Jesus. There were a few things going on in my life that were selfish and did not honor the name of Christ that I bear. I repented of those things and was forgiven.
We drove home (Pat told us to call it home - and it is). We were showing Pat and Renee's mom pictures of Emily when the cell phone rang. It was Emily's nurse. Her oxygen levels had fallen below 70% after we left. The doctor was called and orders given to put her back on prostoglandin. She recovered to the mid-seventies. That means as her ductus closed she wasn't able to get forward flow through the proper valve into the pulmonary artery to the lungs... she will need surgury to put an artificial bypass in, a shunt.
What can I say? Please God, not this way... why? But in the end... Amen - so be it. Joel

For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthen with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith - that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpassed knowledge, that you may be filled with all the fulness of God.
Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all genererations, forever and ever. Amen. Ephesians 3:14-21

Moving up the street again

For pictures please see the next post, and "Scenes from Minnapolis"
We don't know when we will be able to use this blog for updates again as we have been discharged from Abbott and Children's blocks this site.
Emily is doing well. They are giving her nitrous oxide to help her lungs become more flexible. The Dr said that tomorrow they will start to take her off the prostogladin that keeps her heart valves open. I thought they would be ready to do surgery but he said they could up the medication again if she doesn't do well, then plan for surgery. Tomorrow all the pediatric doctors, cardiologists and surgeons get together to discuss each patient, so the plan could change with the input of the whole group.
We will be staying with our new in-law in-laws, Pat and Clyde; with the kids and Renee's mom. The kids do really well there and we will be able to be together and still see Emily each day. Pat and Clyde have set up a tent in their living room and they go camping with Joshua. He fishes and has a campfire, and is very detailed in what he does with the fish and how he puts out the fire! What a kid! We are very thankful to this family we've become a part of.
Josh and Stephanie reminded us of our Father in heaven who knows how it is to greive over a suffering child. We too wept at the thought of Emiy having to go through open heart surgery. But once again we laid aside any claim on Emily Grace, as we have done with the other kids, and committed her into the hands of our loving Father in whom is life. We slept very peacefully last night, because as Psalm 4 says, our peace is not in circumstances or success, but in the goodness of our God. May the life of Jesus continue to spread through all of us in all of this. Grace, Joel.

Pictures of Emily Grace

Emily is in the Pediatric Intensive Care Unit in the Children's Hospital next to Abbott. She is stable. She does some breathing on her own but needs a ventilator. She has a tube down her throat for that. A tube through her nose goes into her stomach to pull gastric juices out. She has a catheter in uretha for urine. Another tube goes through her umbilical cord into her heart and takes
measurements, administers the water and nutrients she needs, and gives her medication to keep valves in her heart open, another to strengthen the beat of her heart and there are others that I don't remember. In a day or two they will possibly take her off the prostogladin which keeps her bypass open. They will moniter her breathing and oxygen saturation to see how she does on her own. At that time they will also be prepared to do open heart surgery if the numbers aren't good. Please pray she won't need surgery!

Otherwise she is doing good. We enjoyed the times we had to touch her today. She hardly opened her eyes so we got in real close when she did. Her eyes aren't as puffy as in that first picture. She's got beautiful skin. And her mouth is only distorted in the pictures because of the tubes. She cries, but it is silent because of all the tubes in her throat. That's heart-wrenching.

Joshua and Rachel and Papa (Renee's dad) came this afternoon. I think Joshua 'gets' it, he was pretty quiet around Emily. Rachel was more interested in Emily's fuzzy pink blanket like her own. Joshua got to push Mama in the wheel-chair. Later just Papa and Neena came to visit Emily with us. They are here now helping us figure out a plan. James had to return to Indiana tomorrow. Renee gets discharged tomorrow. But... the Carpenters have asked us to stay there with them. They are wonderful and totally giving like Jesus.

Renee (who I forgot to mention before was absolutely beautiful through the whole thing) is doing very well. She looks very good and should be in street clothes tomorrow.

Enjoy the pictures!

She cried!

Thank-you Jesus for that little voice!
Emily arrived at 1:27 today, June 2. She was taken immediately to a NICU (Neonatal Intensive Care Unit) next door to the delivery room. We could hear her screaming through the thick door. After a few minutes I (Joel) was allowed to see her. They placed a breathing tube down her throat. She doesn't always remember to breathe they told me. Into her bellybutton went a tube that goes right into her heart for medications and taking blood. Just before she got trollyed over to the Children's Hospital Renee got to see her for a moment. I went with her through the tunnel. Eventually she was placed in the Pediatric ICU. The x-rays and fetal ECHO (ultrasound) showed that her heart is still abnormal. She will stay on the breathing machine and medication to keep the bypass that still allows blood to get to the lungs open, for a few days. Then they will take her off the medication and see what happens. If she can't push blood through the proper avenues they will surgically place a shunt in her heart. Renee was eventually wheeled over to Children's (a ten-minute trip). She was pretty weak so we came back to Abbott and placed in a recovery room. I think Renee will heal very well. But she is feeling kinda lost and lonely being separated from this girl she's spent the last nine months with. Emily is so wired up we can't even hold her yet. But hopefully we'll have a lifetime to connect with our daughter. Thank you for praying us through labor and delivery. We'll keep you all posted. Grace, Joel
P.S. Renee reminded me of some important things to share! Emily Grace was 19 1/2 inches long (just like Joshua and Rachel). She weighs 5 lbs 15 oz. She's got dark fuzzy hair - a little more than the other two did. And despite all the tubes and wires and stickers, she's adorable - looks very much like Rachel did as a newborn. Even the rest of her body and the way she lies is just like the other two. Back to Renee - bye.

Scenes from Minneapolis

While Joel and Renee are in labor, Renee's dad has the computer with the pictures, so he is posting for them:

.Room at the Hospital.

We're on our way to the hospital now, there is room for us to deliver Emily.

.Sunday.

Yesterday Ryan and Emily were married in Richfield, MN. It was a beautiful wedding, with about 175 people. The ceremony was glorifying to Jesus, we could tell immediately that Ryan and Emily both have hearts completely in love with Jesus. It was very refreshing. Reception followed, seeing family and friends and acquaintances. I (Renee) don't do too well in these kind of situations, but it went alot better than I anticipated.
One more day with Joshua and Rachel, then tomorrow - if there is room in the hospital - Renee will be induced. Please pray for courage and trust in God as we come to the hardest time of this journey yet. Whatever you are doing Jesus glorify your Name.