Laura and I are trying to figure out our new norm. We're attempting to figure out how to balance family life at home, time with Ira and my work. It's hard to know what's right because nothing feels right.
It doesn't feel right to leave Sophia in the morning even though she is in great hands with her grandmother. It doesn't feel right to leave Ira in the afternoon to come home even though he is in great hands with the world's best nurses (I truly believe that). It doesn't feel right to neglect the Brooklyn church plant, Christ's Church for Brooklyn, even though there are quality leaders taking over and pushing forward. I guess this is the new norm Laura and I are trying to settle into...but it just doesn't feel right.
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Ira had a good day. "Good" has been re-defined by us. It now means this when applied to Ira: he was peaceful most of the day without too many instances of de-satting (de-saturation) and generally stayed stable most of the day. I was able to be hands-on again this morning changing his diaper, taking his temperature and helping turn his head. We turned his head and it was the first time we got to see the left side of his head. It was flat as a pancake and Ira wasn't sure about it to begin with but soon went to sleep. He laid for 12 days on the left side of his head so this has got to feel different for him.
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I mentioned that Sophia was begin taken care of by her grandmother. I can't express to you how nice it's been to have Laura's mom here willing to do just about anything we ask of her. I'm sure Kay is missing home (St. Louis), her husband (Harvey) and her church family (Mid-County Church of Christ). I'm sure she is tired of chasing a very active two year old around. I'm sure she is tired of her annoying son-in-law. I'm sure she longs for some time to herself. But she just keeps pressin' on. God bless her.
It doesn't feel right to leave Sophia in the morning even though she is in great hands with her grandmother. It doesn't feel right to leave Ira in the afternoon to come home even though he is in great hands with the world's best nurses (I truly believe that). It doesn't feel right to neglect the Brooklyn church plant, Christ's Church for Brooklyn, even though there are quality leaders taking over and pushing forward. I guess this is the new norm Laura and I are trying to settle into...but it just doesn't feel right.
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Ira had a good day. "Good" has been re-defined by us. It now means this when applied to Ira: he was peaceful most of the day without too many instances of de-satting (de-saturation) and generally stayed stable most of the day. I was able to be hands-on again this morning changing his diaper, taking his temperature and helping turn his head. We turned his head and it was the first time we got to see the left side of his head. It was flat as a pancake and Ira wasn't sure about it to begin with but soon went to sleep. He laid for 12 days on the left side of his head so this has got to feel different for him.
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I mentioned that Sophia was begin taken care of by her grandmother. I can't express to you how nice it's been to have Laura's mom here willing to do just about anything we ask of her. I'm sure Kay is missing home (St. Louis), her husband (Harvey) and her church family (Mid-County Church of Christ). I'm sure she is tired of chasing a very active two year old around. I'm sure she is tired of her annoying son-in-law. I'm sure she longs for some time to herself. But she just keeps pressin' on. God bless her.
posted by jch at
5:07 PM
14 Comments:
I agree, God Bless my Aunt Kay. What a wonderful person she is. I'm glad Ira had a good day. He is continually in our prayers. We love you guys.
Brenda
Ditto what Brenda said... my Aunt Kay wouldn't want to be anywhere else right now. You're very blessed to have her as your Mom, Mom-in-law and Grandmother! Much love to you... rest well tonight.
Jennifer
listening to this from the outside of the situation, your comment 'nothing feels right' just seemed to resonsate with me. it's a comment that just makes sense in the midst of a lot that makes no sense. love you, brother.
Wow, Ira probably has a whole new appreciation for the world, looking at it from a different angle! What a strong little spirit he has to be able to meet each day's challenges and remain peaceful. He takes after his parents, I suppose.
Mrs. Heintz, It was wonderful to read about you in today's posting. My parents were asking about you and Mr. Heintz last night when I gave them the daily Ira update. They send you their love, prayers, and support here from Raleigh, as do I!
Beth (Cizek) Nathison
Joe, don't fret about where you should be. Let your heart lead you. We will keep praying.
grace, Julie
I am so glad to hear of Ira's good day. I know that is a relevant term at this time. We sure do miss Grandma Kay here but I am so glad she is able to be there with you and Sophia. She has a special role to fill at this time. I keep watching for a picture of Sophia and Laura in their red St. Louis Cardinal hats. We continue to lift you up to our Heavenly Father.
Debbie Davis
Thank you again for sharing so openly and heart to heart your daily situation. Yall are on our hearts, in our prayers and in Our Great Healer's arms. Fight the Fight, Keep the Faith, Finish the Race, be strong lil one!
whit & kasey
Dear Laura and Joe,
I just want you to know that my thoughts and prayers have been, and continue to be with you!!! Laura, your dad came over here (this is Susie Keith writing) and filled us in on everything after he returned from New York. Then Sarah Buehrer(who is a dear friend of mine) sent me the link to this site. When I saw the pictures you posted of Ira in the NICU...with all the tubes and wires etc...I just bawled my head off! They look EXACTLY like pictures I have of both my boys when they were in the NICU! Especially Kevin! I don't kow what you remember about back when Kevin was born (you were in high school I think) but I had been on medication and bed rest and it was a MIRACLE that I carried him to 32 weeks and that he was born ALIVE! Still,he was born 8 weeks early and had to stay in the NICU fore 7 and 1/2 weeks. He was a very sick little puppy! He was in critical condition and on a repirator for over a week. (Later a friend told me that another friend of ours who was a Nurse practitioner in the NICU told her that for a while, the Neonatologists didin't think he was going to make it!!!) He had needles and wires and tubes in every part of his tiny 3 lb body. They had to splint his arms (he looked like a little Jesus!) and give him drugs to "paralyze" him so he would not pull out his IVs! (Sound familiar?) We weren't allowed to hold him for about 2 weeks. Besides severe hylaline membrane disease of the lungs, he had liver problems, severe anemia, blood sugar problems, BRAIN SWELLING (scary!), an infection, reflux, apnea and bradycardia etc. etc. etc. You get the picture! (I can converse with a Neonatologist and read the chart Of a NICU baby like a PRO!) The point of me telling you all of this is that, although Ira's medical condition/situation is different, I understand what it's like to have a very sick baby! I know what it's like to have to leave the hospital every day WITHOUT your baby! I understand the fears and the frustration and the exhaustion. (And when Daniel was born 6 weeks early and had to stay in the hospital for almost 3 weeks, Kevin was only 22 mos. old and we still had to take care of him AND try to "live" at the hospital too!) Both of my boys came home on medication and heart monitors (Kevin for 9 mos.!) and Kevin had to have physical therapy and cognitive testing throughout his first few years. Desptite the very life threatening and tenuous beginnings of my children, they are now normal, healthy 12 and 14 year old boys! And, believe it or not, those agonizing and interminnable first weeks are now just sort of a blurr..just little blips on the big radar screen of life! I do not know what the Lord's plans are for Ira. But I just wanted you to know that there IS HOPE! No matter what the doctors say, hang on to hope and trust the Lord! He will be faithful to lead ALL of you through this wilderness experience!
Love, Prayers, and Blessings,
Susie Keith
I second Andrea Sue's thoughts..."it is everyone's pleasure to serve you guys in this time." Amen!!!
In the midst of the questioning, the lament, the honest reflection on painful dilemmas, and the confession of weariness, frustration, even insufficiency, there remains such a great testimony of faith in God and His sufficiency in our frailty and weakness. Thank you for this witness. We continue to pray for Ira and your family.
Hello dear friends,
We must let you know that Springfield, Missouri wants to be counted with the many other prayer warriors for your precious son! Our family will share your need as the body of Christ to lift you up when nothing in you is able to stand. We cannot imagine...but we hug our children tighter today because of Baby Ira. We look forward to meeting both Ira & Sophia some day!!
Love from the Fridges!! (Eric, Jenny, Meg, Ben & Maddie Grace)
The prayers continue....and praise for each day completed and especially for each time you are able to touch and love Ira.....and prayers for your struggles to find balance when your world is upside down and praise for your vulnerability and sensitivity and caring for others even in the midst of loving Ira and Sophia so much...and prayers for your physical and emotional and spiritual strength and praise for your hearts that are so willing to both minister and be ministered unto.....dm & Christ Covenant
Hi Joe,
Thanks for being so vulnerable. I pray for Ira (and you guys) whenever I think about it. I am glad that he is stable. I am also glad that you are not trying to be a superhero at this time. There is a time for everything...
Love,
Claudia Etienne
I wanted you both to know that my congregation and I are praying for you and your baby. I remember what it felt like to go home from the hospital without my baby (28 years ago), and how everyone wanted to help, but didn't know what to do or what to say. I'm saying that God is in charge. I learned that it's best to put Him in charge. He's so much smarter than we are, and His hands are so much bigger and stronger.
Just wanted you to know that, even though the doctors weren't optimistic, my baby is a healthy young woman now. There is no evidence now of how ill she was when she was born. And there is someone who knows a bit of how you feel.
You are in my prayers.
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