From the hospital we began a carepages site to update everyone on Joel’s status before we started this blog. These are the entries:

June 11, 6:20pm

Joel was born at 1:45am on June 9. And whether it is on earth or in heaven, we know that Joel will live.*
Because Sara's pregnancy had been so healthy and effortless, most of us expected the planned home birth to be simple and not lengthy. Although we knew that Joel was likely breech, there was no reason to believe that he could not be born normally - his estimated weight was less than 7 pounds and mom and baby were in perfect health throughout the entire pregnancy. There was no reason to believe anything would go wrong. The midwives who saw Sara and Joel throughout the pregnancy are very experienced and skilled, and well versed in breech birth presentations.
Sara's labor began around 3am on the 8th, (Joel was due on the 3rd) and continued throughout the day. Surprising to most of the family, her labor progressed somewhat slowly, but it continued to progress through the day and into the night. As a breech presentation Joel's little bum and legs were born first. For reasons we do not know, Joel's head became stuck. The entire birth team and Sara worked quickly and as hard as people can work to ensure that his head would be born as quickly as possible, but there was a delay that led to a lack of oxygen to little Joel.
Immediately upon his birth, the attending midwives commenced CPR and oxygen treatments to Joel. When he did not respond in moments 911 was called. Responders arrived very quickly, and commended the birth team for their excellent treatment, and continued treatment en route to Botsford, the closest hospital. Sara was also taken to the hospital.
At Botsford, Sara was admitted to ensure she had no issues that would affect Joel's treatment, and it was determined that Joel needed Neonatal Intensive Care - which would require transfer to Beaumont Royal Oak, where they have an exceptional NICU.
The NICU transfer team arrived, and transferred Joel to Beaumont, Sara was to be kept at Botsford for 24 hours.
Many thanks to the responders and the ER team at Botsford, for taking such excellent care of Joel and Sara. Their compassion and excellence will always be remembered.
In the postpartum ward, Sara was given incredible care, and discharged early around 4pm to go be with Joel. (due to extra effort by Kristi, the outstanding postpartum nurse – thanks Kristi!)

*This phrase was first coined by the remarkable MckMama (www.mycharmingkids.net) when referencing her son Stellan. It is as true as always, and used here with her permission.

Medical Issues

Posted Jun 11, 2009 6:32pm

Initially at Botsford, the team was concerned with Joel's temperature, because he had immediately received emergency care he was naked and cold. The Botsford physicians also had concerns about Joel's lack of responsiveness, and intubated him because he was not breathing on his own.
Upon transfer to the NICU, the team began a treatment for newborns who had sustained trauma that included cooling Joel. (note the irony) The babies are cooled because cooling slows the body systems, which can also slow damage and allow the infant to heal from trauma at a more manageable pace. This therapy is employed for 72 hours. Joel will begin to be warmed at 5:30am on Friday June 12.
The NICU team at Beaumont had concerns entirely based around the lack of oxygen and circulation Joel suffered at birth. His heart (PRAISE GOD!) is strong and has been beating steadily on its own since his arrival at the first hospital. However, the doctors were concerned about damage to his brain, and function in his kidneys and liver. They also had large concerns, surrounding brain function, about his lack of attempts to breathe on his own and complete unresponsiveness. Joel never responded to any stimulus.
To assess the damage to his brain an EEG was performed on Wednesday June 10. The results showed no cerebral activity. While Joel's other lab results and metabolic issues continue to improve, or are well within manageable range, so the primary concern is whether or not Joel has any brain function.
We refuse to give up hope. We serve a God who is bigger than tests and statistics, and he holds our child in the palm of his hand. We know Joel will live, and if he lives in heaven we know that is God's will for our child. But we pray for a miracle, that Joel will live here on earth, and we are grateful and proud of him for every single moment he lives that we get to share with him here. Praise God Joel lives!

What to pray for

Posted Jun 11, 2009 6:57pm

On Friday June 12 at 5:30am Joel's cooling treatment will be complete. While some doctors have stated their belief that little will change, Joel's neurologist believes that anything is possible, and so do those who love him!
Pray that warming Joel to a normal temperature helps him to respond. He has been taken off any medications that would suppress his brain function, and so once he is warmed another EEG will be performed.
PRAY THAT JOEL'S EEG SHOWS BRAIN ACTIVITY.
The EEG will be performed late Friday afternoon after Joel has had a chance to fully warm. This test is truly the determining factor of whether or not Joel will be considered brain dead. Some doctors already consider him in this state. We believe, we have faith, and we serve a God who doesn't subscribe to the odds that these doctors quote to us. We trust and we pray that Joel will become responsive, and that this EEG will show some activity; some change.
Joel has a wonderfully positive neurologist who believes in miracles, she has told us she sees them every day. She wants to do this test, but has been very clear with us that this is really Joel's last chance.
We baptized Joel today, as a symbol of an act that Leo and I commenced nearly ten months ago - we placed our child in God's hands, knowing he is only ours as long as it is God's will. We are grateful for every moment, and praise God that we have had the honor to be his parents.
Praise God that Joel lives. Every moment this baby is alive is a precious gift from God.
Praise God that Joel's heart is perfect and strong. This gives us all hope, and it sustains our son's beautiful little body.
Praise God that he is good. In all things God is good, he has given us so much, we are overwhelmed at how beautiful Joel is; how perfect and handsome.
Praise God for those caring for Joel. The staff of the NICU at Beaumont are stunning in their compassion and competence. We cannot sing their praises loud enough, or stress enough how very hard they are working to save our son.
Praise God for the remarkable prayer network around the world praying for Joel. We are so grateful for all of you - and every word you utter reaches the God who saves. Our God reigns.
Pray that the Great Physician will heal our son completely.

Yours in Christ,
Sara

Joel's Big Day

Posted Jun 12, 2009 8:04am

Praise God Joel will live!
We know that he will live, and we trust his heavenly father that the plan for Joel is perfect for our wonderfully created son. If Joel's life on this earth is short, we know his eternal life is secure, and heaven is going to be a little better looking for having our handsome little man on board.
Joel is already being warmed. This therapy was created for babies with issues like Joel's, this is why he is here, and this is what he needs. We are hopeful and prayerful that his story will be one of the many miracle stories of this course of treatment.
We also pray that his story will be the source of faith for many. Pray that Joel responds today; that he has brain activity; that he fights and comes back and the skeptics will have to declare the glory of the Lord. We are praying for a miracle, and we are hopeful in the Lord who gave us this miracle child in the first place. We are also steadfast in the belief that God is good in ALL things, and his plan for us is better than any plan we could make for ourselves.
We love Joel, we love all of you and we are waiting and watching our son today, knowing he is in the hand of the one who loves him perfectly.
We do not yet have a time for the EEG, but expect it to be late this afternoon. We will update as we can.

As ALWAYS,
Yours in Christ,
Sara

Mid Day

Posted Jun 12, 2009 12:28pm

Joel is now at a normal body temperature. As always, his heart is perfect and doing a wonderful job. His vitals are good, and the staff are managing some other minor ongoing issues. As has been the case, his body is functioning relatively well, and the doctors are able to treat any other issues - their only true concern is his brain. Although he is on a respirator which is breathing for him, the doctors see this as a result of his brain issues, and not an independent problem on its own.
It is wonderful to see our little boy warmed up, and in a moment I get to go hold him again; truly the best moments of my entire life. God has shown himself to me in those moments in a way I cannot begin to describe.
Please continue to pray that Joel will show some sort response, and that his body remains strong. Pray that his brain will work.
His EEG will be some time late this afternoon. It takes about three hours by the time they hook up everything and run the test. We will update as soon as we have an exact time - likely sometime between 3-6pm.
Thank you again for all of your love and support, Joel feels it from here and so do we.

Yours in Christ,
Sara

EEG times

Posted Jun 12, 2009 12:56pm

This is Lis, Sara's sister. She is holding Joel right now but, wanted to update everyone that Joel's EEG will be started around 2-3 this afternoon so everyone please pray for brain activity. Pray as hard as you can. We need Joel to be our miracle baby. Thank you to everyone, your prayers are felt through and through. Pray, pray, pray.
Aunt Lis

EEG finished

Posted Jun 12, 2009 3:26pm

This is Jen, Sara's sister. Joel is finished with his EEG, and Sara is washing the goop out of his hair. The results have to be read by two different doctors before their neurologist will come and talk to them sometime later today.

Please continue to pray for the doctors as they read these results and continue to care for Joel. Please pray for Joel as he continues to fight. Please pray for Sara and Leo as they wait for these results.

Thank you all for your support - it means a lot to the entire family,

Aunt Jennie

Joel lives

Posted Jun 12, 2009 6:13pm

God is good in all things.
Joel's EEG showed no change, and the doctors sincerely believe he is brain dead. We know that our little angel is living in heaven. Although his body is here, we are certain God had a very important job for him in heaven.
We have not yet decided when to remove life support, likely some time tomorrow morning. We are heartbroken that Joel will not live here with us, but comforted that this is all in God's perfect plan for our son. We praise God that we got to spend the time with him that we did. I feel guilty, I got to hang out and share so much more with Joel than Leo did; I can't wait to meet him in heaven. He cracked me up so much in my belly, I'm certain he will be quite the prankster when we get to know him up there. We praise God that he may be an angel here on earth to other babies, and ask that you pray that his earthy body may help as many children as possible. So much of me believes this was his earthly purpose and that is why his body has been so strong.
And we praise God for all of you. All of your prayers and support have taken my breath away time and again. I am overwhelmed at just how GOOD people are, it is a testimony to Joel's short life.

Yours in Christ,
Sara

Joel lives on

Posted Jun 13, 2009 3:21pm

Psalm 27:13-14 "I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."

In order to allow Joel to help as many other babies as possible, logistics had to be coordinated during the day today. He will be removed from life support around 8pm. We have full faith and confidence that our Joel is already dancing with Jesus, and that he is proud of us for working to make sure his earthly body is honored as a gift to other families. It is our honor to complete this task on his behalf.

He has the funniest little monkey feet, and all day long we just touch them and smile, knowing you need a good pair of feet to keep up with the dancing in heaven. We really just can't wait to join him, and see him in his perfect state. Joel's short life and long legacy will be the subject of a celebration of his homegoing - details to follow when we have them.

God is good, and so is our son,

Sara

The most amazing hour

Posted Jun 14, 2009 3:21pm

Leo and I shared the most amazing hour of our lives last night with our son. God gave our son a heart so strong that it beat for nearly an hour after all the man made devices were removed from his body. We got to hold our son, and talk to him, and sing to him and just be a family and it was the most joyful hour we will ever live.
And then we praised God that Joel will stay in his arms for eternity. We can only look forward to meeting him again, and getting to repeat that feeling forever with our Joel.
We are tentatively planning Joel's celebration for Saturday June 20. There are no details as yet, but the location will be Faith Covenant Church in Farmington Hills. We would love to see Joel's prayer warriors united in rejoicing and song with us on the day we celebrate his life. As we finalize details they will be posted here.

Yours in Christ,
Sara

Gifts for Joel

Posted Jun 15, 2009 4:16pm

The list of people to thank seems overwhelming in itself. We begin with all of you - the kind and loving support of Joel's network is stunning, we praise God for every single one of you. Thank you from the bottom of our hearts.
If you could lift the staff of the NICU of Beaumont in your prayers we would be incredibly grateful. Every one affiliated with this unit has been competent, compassionate and so incredibly human throughout this process we struggle to find words to describe them to you. Please especially thank God for Joel's nurses, these women worked tirelessly to care for our son, and for us. It was always clear that this is not just a job to them, and the lengths they went to for us and for Joel are a testimony to the human spirit. Their names are Carol, Theresa, Alysse, Cheryl, Amy and Jennifer - we will never forget them.
In lieu of gifts and flowers, we would like Joel's name to be honored by caring for other families who have to spend time with their babies at the NICU. We were given casts of his little hands and feet, prints of them too, and the blankets he slept on in addition to other items, and were daily provided with food and drinks to keep us going. These things may seem simple, but permanent keepsakes of our son are a priceless gift, and the ability of the staff to order up meals and drinks made it possible for us to focus on Joel. We feel it would be a fitting tribute to our son, and a beautiful Christian act, to provide these things to other families in crisis. If you are so moved you can provide a gift that makes these things possible in Joel's name.

If you are interested in donating a gift to the Beaumont Foundation in Joel's name, please email me for details at sara_joy1@live.com

We are still working on the details for Joel's service, and will post the time tomorrow. It will be held at Faith Covenant Church in Farmington Hills (www.faithcovenantchurch.org) on Saturday June 20. Everyone is invited, we would love the chance to thank each of you in person, and to share some time with you remembering our beautiful son, while praising God for his life, and celebrating the fact that he is in heaven.

Yours in Christ,
Sara

Grieving and rejoicing

Posted Jun 17, 2009 9:07am

Joel's life celebration will be Saturday June 20 at 1pm at Faith Covenant Church in Farmington Hills. Everyone is welcome as we look forward to sharing more of our amazing son with you, and to rejoicing that he is forever in heaven, safe and perfect. But we also know that Saturday will give us all a chance to grieve together, to share in the sadness that we don't get to know Joel on this earth, to mourn our loss.
Everyday I wake up is one day further away from the last time I kissed his beautiful face, but also one day closer to seeing him again - it's terrible and wonderful all at the same time. God is comforting us, through the kind words of friends and strangers and the slow passage of time as the days continue on without our baby. Again, I feel the need to send thanks, to all of you for lifting us in prayer, we need and appreciate every one, and to our families for their unending support. We can't fathom what these weeks would have been like without our families' constant help.

S

Our son lives in heaven

Posted Jun 24, 2009 12:26pm

I have been trying to write this entry for days. Usually I start it in my head but don't even get far enough to type a few words. Occasionally I have opened this window and put together a few sentences only to close the whole thing when it sounds all wrong.
I want to say so much, and it all comes out jumbled and wrong and somehow the million things I want to say just don't fit in the very few words I can force myself to utter these days. It occurs to me that the long days of grieving when you are forced to return to real life are upon us, and that perhaps it is simply grief that has robbed me of my ability to create sense of my thoughts and place them into words.
But I want to thank all of you - I so desperately want you to know what all your words have meant to us, words from friends we see every day, and those we have missed for years, words from family, from strangers and from others who feel our hurt. Words from those moved by our stunning son, and those moved by us. I want you to know what it means to us to go to the mailbox and get yet another letter from the Beaumont Foundation with a list of names of the wonderful people who are supporting families in the NICU in Joel's name; your gifts bring us joy in a way that defies words. I want to tell all of you how I fight to say "Our son lives in heaven" instead of "our son died". It is so much easier to give death that sting and finality and I refuse because I know that our God reigns, even over the grave and he holds our Joel, our living Joel, in heaven. It feels like it is over here on earth, but I know it is not, and I won't give in to the temptation to make it sound like his life has ended.
It has not. Our son lives in heaven.
I want to tell all of you that providence is real, that grace exists and I see it in our marriage daily. We have never been more in love, or closer, or had more admiration for each other. I want you to know that even though I want to hide, I still read all of your messages, and if I don't get back to you it isn't because we aren't incredibly grateful. I want you to know that it's ok to talk about Joel, the more the better and even if we cry it is so much better than not talking about him. It is so hard to believe this all happened some days, and I feel like we owe that to him, to acknowledge that he is real, and talking about him makes him so real to me, so even if it hurts I want to talk about him all the time.
I want to tell all of you that God is so good. That we are being held, and provided for, and loved so deeply and we feel that even in the most difficult moments. We are blessed beyond our comprehension, and that has not changed. I want you to know that you matter, to us and to the people around you. I want to tell all of you to GO HUG YOUR KIDS. If you think of my son, take a moment and tell someone you love them, steal a minute to kiss your spouse and tickle your kids. Any child of ours would appreciate a practical joke too. Go play one on someone who thinks they don’t have time to laugh today.
Thank you for standing with us, for loving us and loving Joel. For making sure that his life matters. For helping us through this, and for making sure that the name Joel James is one that will bring smiles instead of tears.
And if you are considering a gift to the Beaumont Foundation, know that all gifts in Joel’s name will go to support families with a baby in the NICU. Funds are spent however families need them – on meals, drinks, and keepsakes for families whose babies will live in heaven. We can’t thank you enough for helping us make this a part of Joel’s legacy here on earth.

Yours in Christ,
Sara

There is More to the Story

Posted Jul 8, 2009 10:36am

I have more to say.
A lot more.
There is so much that I have not shared about Joel, about us, about God and how he is shaping our journey, and I want to share it. I believe it will help us heal, it will help ME heal, to write. Every day a series of thoughts and stories string themselves together in my mind and I have nowhere for them to go, so we are making a place for them to be shared.
Leo and I have decided to make a more permanent website for our family's story.
We are so grateful for Carepages, and wish to respect their purpose by keeping this site to it's original use, so my technology adoring husband is working on setting up a site just for us to continue to share Joel and our lives with any who choose to follow along. As soon as Leo has things ready I will update with the web address. You are welcome to join us as we continue our trip through this life, but again, we want to primarily thank you for your support and prayers during Joel's short life. You have truly given us a monumental gift. So few people get to feel how loved and lifted up they are in this life, we have and it is breathtaking.

Yours in Christ,

Sara