Sunday, February 15, 2009

IMPORTANT INFORMATION----PLEASE READ!

Hello Everyone,

This is just a quick update on what happened down at CHOP on Tues. My Aunt Liz and I met with the neonatal surgeon, the social worker, the genetic counselor, the nursing surgical coordinator, the lactation consultant, and one of the midwives. It was a very busy day. The surgeon, Dr. Leichty, will be part of a surgical team that will be assessing Isaiah when he is born. He feels Isaiah probably will need some type of surgery early on. They will obtain blood work, X-rays and an ultrasound shortly after he is born to determine if his stomach/bowel issue are critical enough to perform surgery right away, or to see if they can wait. We won’t know until Isaiah is born whether or not he can eat. They will probably use a naso-gastric tube that goes from his nose into the stomach to decompress the stomach until he is stabilized. They will also probably use IV nutrition for awhile.

Shortly after his birth they will also assess his brain growth and development. He may need intervention for his hydrocephaly, but right now the doctors plan to just monitor him. They will also assess his liver. If it is functioning ok, no surgery will be needed at this time.

Unfortunately, the results of the amniocentesis have not been conclusive, and the final results are not in yet. As of right now, the doctors have absolutely no idea what Isaiah has. They basically said, we will have to wait until he is born for them to determine what he has and their plan of treatment. Dr. Zackai, the geneticist/morphologist, will come see our son and give her best educated assessment for diagnosis and treatment. It is rather frustrating. Chris and I have absolutely no direction. Most of the time, we don’t even know how to feel. Isaiah may still live a very short life, but maybe he could live. We just don’t know.

Since Friday, Feb. 20th, is the day of my scheduled C-section, CHOP has given us specific guidelines for us and for any family/guests to follow. Please keep in mind that we are in a critical situation, and this is not a normal delivery. I am having major abdominal surgery (a C-section) and Isaiah will be rushed to the NICU. We know that there will be a lot of people who want to come and visit, call, or send gifts, and we deeply appreciate everyone’s generosity. But, we are asking that everyone be extra sensitive to our unique situation.

CHOP’s guidelines are as follows, per Marty Hudson, MSW,LSW:
1. No visitors on Friday until the doctors give us the ok to call a few people to come down. We are only allowed a short list of visitors. Whoever is on the list will be notified by us. Please don’t take it personally if you don’t get a chance to come down to CHOP.
2. No stuffed animals allowed.
3. No flowers allowed.
4. No balloons allowed.
5. Absolutely no sick people allowed. If you or your children have any type of cold, big or small, you will not be allowed to see Isaiah. Please understand that Chris and I also do not want to be exposed. We have to protect Isaiah at any cost.
6. Please visit the blog for updates or call your contact people for information. We will update the blog and post pictures as soon as we are able to. Please do not call us at the hospital. We will have our computer, so we can receive emails.


The following individuals will be the point of contact for the Emr/Solt families and for our church family: David and Lori Emr. For the Miller/Novia families, Glenn and Viviane Miller will be your contact people. Please only call them if absolutely necessary. Otherwise, the blog will be updated as soon as we have information. The contact people will not have more or newer information that is not already on the blog. As the days progress at CHOP, they will have a better idea as to how to help or assist us.

Thank you again for all your prayers and support. We are constantly reminded of God's grace and provision in this difficult time. He has provided over and over again when we needed it most and in the most unexpected ways. God has stayed true to His promise that He "will never leave us or forsake us," Deuteronomy 31:8.

10 comments:

  1. Praying all goes well Friday for delivery, we will be uplifting your entire family in prayers. I hope you will be able to feel the presence of God holding you each as you are about to meet your little Isaiah~

    Exodus 14:14 The Lord will go before (Isaiah Miller) and fight for (Isaiah Miller), you need only to be still.

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  2. Thinking of you guys and praying that everything goes smoothly on Friday. Your faith and trust in God will guide you through this stressful time. Joy, I pray that any anxiety you are feeling will be overcome by your trust in the Lord.

    Love & Blessings,
    Angela Fava

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  3. Joy,
    I have several prayers for you and your family as you embark on this next week. I pray for wisdom for all involved. I pray that the Almighty Physician work his wonders on your tiny son and on you as you heal from the C section. Finally, I pray for peace that you will find by resting solely in Our Lord's open arms! Remember that our amazing Heavenly Father has gone before little Isaiah, is with him now and will be with him during whatever the future holds!
    Melissa Moyer and family

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  4. You don't know me, but I am a friend of Linda Kreger and I have been following your story. I have great faith in a God who heals and sustains, and while I don't know what the outcome of this will be, I know that you and Isaiah rest in the arms of a mighty God who is faithful!

    Beverly Littau
    Woodland, CA

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  5. Will be praying for you on Friday that all will go well for both of you, We know that God has you in his hands.
    Ellie Steppey

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  6. Jen Decker has told me about your situation and I have been praying since I found out. Please know that many people are praying for you. I will add you to my school prayer list. I will be praying for you at 7am Tomorrow and Friday.
    Amy Timpe

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  7. I have been following your story via the North Syracuse Baptist Church (NY) prayer chain and want you to know you are and will be in my prayers. "The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace."
    Much love, in our marvelous, all-knowing God,
    Gwen

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  8. Thought of you all 7:30 this morning and prayed that God would give you peace, wisdom & courage for today & the days ahead. That the Dr's hands would be guided as they perform the C section & that they would have the skilled to know what is the correct treatment for Isaiah's needs. We love you and pray God's blessing on you all. Call if you need us........ Love (Oma & Opa Pedersen)

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  9. So glad to hear baby has arrived and you are doing well, praying that the doctors would have great wisdom in treatment and that God has GREAT plans for this little one! I am praying for complete healing for your little guy! Congratulations! Enjoy him!

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  10. I'm praying for you. I hope everything went will this morning.

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