I suspect that no one wants to have a serious conversation with one of their child's doctors on New Year's Day night. Dana and I didn't really have much choice about it, though. That conversation was followed-up by another one today with the neonatologist who was on duty when William was born.
Both of those conversations provided us a better picture as to William's current condition and some possible future treatments. Below is an update of his condition. If you did not realize before, his condition is critical.
William is now 18 days old. He was born at 31 weeks, 6 days, so that would make him 34 weeks, 2 days now. The doctor today told us that it is rare for 31 week babies who have been outside of the womb for this long to still need this much breathing assistance. (William is currently on an oscillating ventilator at moderate settings. This ventilator is the strongest mechanical assistance that is provided. If he progresses, he will can "graduate" to a conventional ventitlator, cpap mask, and eventually a nasal cannula.) His lungs also continue to deflate sporadically in different locations.
In these circumstances, and in a search for answers, the doctors will begin discussing different treatment options (vitamin A injections, stronger steroids), consulting with specialists, (pulmonologists, neurologists) screening for chromosome abnormalities (We hope those results will be known this week), and rescreening for any birth disorders (The State of Texas does a screen for 29 disorders and the first result returned the possibility of a metabolic disorder. We should know the results of the second screen soon, also.)
It is still possible that William's respiratory system has not fully developed and we pray that is the case. However, with each passing day that becomes more difficult to believe. Obviously, starting to discuss the above mentioned options is very difficult for us.
It is hard for us to scrub-in for NICU visits each day, make the long walks to and from his incubator, have private consultations with doctors, listen to negative news, and not lose heart. We would both rather have William healed than to experience some sort of emotional comfort, so it is hard to sound selfish; but we do need peace and hope.
Thank you for your prayers and your kind words.
This week I further learned the truth in this statement by Peter to Christ at the end of John 6: "Lord, to whom shall we go? You have the words of eternal life."
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sweet baby! we are remembering him often. we will continue praying that the God of all comfort would comfort you. love, leah and matt
ReplyDeleteGod,
ReplyDeleteI pray for peace in the hearts of Dana and Mark. May the Holy Spirit protect William and give him strength as he continues to grow each day.
You will keep in perfect peace him whose mind is steadfast, because he trusts in you. - Isaiah 26:3 (NIV)
Dana & Mark - I will continue to pray for you and sweet William.
Still praying for you guys. Know that God is with you and sweet baby Will, and KNOW that he is listening and KNOW that he answers prayers.
ReplyDeleteCast all your anxiety on him because he cares for you. 1 Peter 5:7
he shall call upon Me, and I will answer him;I will be with him in trouble;I will deliver him and honor him. Psalm 91:14
Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid. John 14:27
Mark, Dana and William -
ReplyDeleteWe are thinking and praying for all three of you. Please let us know if you need anything at all.
With love,
The Connolly Family
As I sat in church this morning agonizing over the possibilites presented in the blog about sweet baby William's health, this verse from Psalms 117 was read, "For great is his love toward us, and the faithfulness of the Lord endures forever." He knows your hearache, your wishes and your hopes. I'm praying for God's strength to be yours in these days.
ReplyDeleteLove,
Aunt Losey
I continue to pray for God's healing touch on Will and for strength and hope for your family...
ReplyDeleteLove,
Tara
Praying for your sweet baby boy and that the Lord will provide you with the strength to face each moment, breath, step and thought with His peace.
ReplyDeletelove,
The Selfs
What a precious baby boy! We are praying for you all.
ReplyDeleteLove,
David and Candice Stites
"I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit." Romans 15:13 -Aunt Mary's favorite verse.
ReplyDeleteWe are praying hope for your sweet family. We pray that Will's lungs start developing now. That he grows strong. May the Lord give y'all strength, peace, and comfort that can only come from Him. We love y'all!
A facebook friend posted this blog = praying for comfort, peace, and wisdom for you - God bless you all!
ReplyDeleteThe Quinn Family
Kaufman, TX
Be with Dana, God, as she probably envisioned her maternity leave in a much different light. Help Mark as he attempts to concentrate on work, Dana, and his son at the same time. And strengthen Baby Will, God. He needs the strength and power that only you can give him. Thanks for caring for all of our hurts and worries, God.
ReplyDeleteWe love you guys!
Kelly & David
Dana and Mark,
ReplyDeleteAll of you are in our prayers! I've been thinking about you guys a lot. I was out of town last week so I'm just catching up today. Thank you for posting the updates--they are very helpful. I am amazed at the strength you show by even posting updates.
Maria Hennecke
Dear Mark and Dana,
ReplyDeleteWe have been praying as a family here in TN. Johnny and I are continuing to pray each morning at about 8:00am.
Psalm 91:1-2 is on my heart. "Those who go to God Most High for safety wil be protected by the Almighty. I will say to the Lord, "You are my place of safety and protection. You are my God and I trust you."
Blessings, Johnny and Rosie Stites
My family is one of many that are praying for your family. Jesus said in Matthew 7 that God wants good things for your son even more than you do. I ask God to provide healing to little Will.
ReplyDeleteDavid Stites
We are praying for you all.
ReplyDeleteMuch love,
Bryan & Kelli McAnally
We've not met your family, but we are in David & Kelly's small group up in Kansas City. You all have been in our prayers for several weeks, now, and we will continue to go to The Throne on your behalf. Praying expectantly for healing and development for little Will and peace and strength for you both as you walk this road of uncertainty.
ReplyDeletemark and dana-
ReplyDeletepraying for will every day. i hope that they can find out what's going on and help will get the progress that all of you want to see. if you need anything please let us know. (((hugs)))
love,
jenny, greg and cal vanderpool
"In Thee, O Lord, do I put my trust; let me never be put to confusion. In Thy righteousness deliver me, and rescue me; incline Thine ear to me, and save me. Be Thou to me a rock of habitation, to which I may continually come; Thou hast given commandment to save me, for Thou art my rock and my fortress."--Psalm 71:1-3
ReplyDeleteMy thoughts and my prayers remain with you three. I lift you up in His mercy and grace.
All my love,
Steven Boyd
We're thinking about you and keeping all of you in our prayers. We lift up the doctors and pray for wisdom and clarity. We pray for the development of little Will's lungs and healing for his entire body. And we pray for both of you - for peace, strength, and hope.
ReplyDeleteIf his name is an indicator, then he's a fighter.
Blessings to you, Allen, Laura, and Bella Estill
Praying for God to give you strength, peace, and encouragement through this time. This upsets me so much. I can't read your updates without crying. I will be praying for God to heal little William and get him home into the arm's of his loving parents. I love you Dana! God is good even when we don't understand. Jeremiah 29:11
ReplyDelete(from Brooke Clark - PC camper)
Dana, Mark and Will,
ReplyDeleteOur family is praying for you and wishing you the very best. We hope that Will can make progress and soon be home with you.
Much love,
Tracy Negrete
Those who sow in tears will reap with songs of joy. Psalm 126:5
ReplyDeleteDana, I am thinking of you and Will and your family daily. I simply can't imagine what your days are like. Keep the faith for that beautiful baby.
Much love,
-Lori Eshbach Comanich
Mark & Dana…...Our prayers are with you guys, as we know there is nothing more discouraging and devastating than to see your child lay helpless. And, while this worry can be overwhelming we suspect, if you could, you would willingly change places with young Will.
ReplyDeleteWe are thankful of your trust in God and that you feel safe knowing that He is in control of your life and has His hand upon your entire family. We pray that He will continue to take care of this little guy and comfort you through this unsolicited event in life. He created Will - and He can heal and restore that precious body as well.
Our continual prayer is God’s love will heal this precious little body and nurture your hearts.
Sent with our love,
Tom & Cheryl Dickerson
We are praying for you and your little one. Our God is a Mighty God. I believe it with all of my heart and I know He loves Will more than we can imagine. Wonder what Dana has figured out about his personality so far! Love you guys!
ReplyDeleteMark and Dana, Baby Will has been in my prayers often every day. I thought of God leaning down to breathe into Adam's nostrils the breath of life and that has become my constant prayer. I am also praying for you two for strength and faith to go through this trial. I know this is a very hard time for you. Paul and I love you guys so much and we wait by the phone every day anticipating good news about Baby Will. We are here with you in Spirit! Woodye Kaye and Paul
ReplyDelete