We are still waiting for The Phone Call with the results of the tests that were done in Charleston.  I did get a call from Dr. Raunikar, the pediatric cardiologist, telling us that he expects the results to be on his desk on Monday.  When he gets them, he will promptly have them faxed to our family doctor, Dr. Fowler.  Dr. Fowler has been asked to be notified immediately when that fax arrives, then he will make The Phone Call.   When I get The Phone Call I will update the blog as soon as I can.

We are discussing having a g-tube (feeding tube) put in so that Noah can start to gain some weight.  He has only gained a few ounces in the last three months but has continued to slowly gain in length.  This means he keeps looking thinner and thinner.   He really is a frail-looking little guy and it hurts my heart when I change or bathe him and see all of his little ribs and other bones.   The g-tube would be surgically inserted, probably in Greenville, and could be removed later if he was able to eat well enough.  Even though it is very invasive and will require general anesthesia and an out-of-town hospital stay, this type of feeding tube will not interfere with his ability to continue to nurse.  He will be able to recieve speech and occupational therapy to teach him how to eat and will be able to verbalize normally.  A non-surgical tube down his throat or nose would be less invasive but would interfere with his other feeding and speaking goals.   Jeff and I are OK with this.  The feeding tube isn't the problem. The problem is that sweet Noah is too fragile and thin, and the feeding tube is part of the answer. 

We do have a couple of unanswered questions about the tube.  We know that Noah will be fed through the tube on a schedule, but we want to be sure that he can still nurse on demand, especially for comfort and for going to sleep.  Please pray that he gets understanding dieticians and doctors who can recognize that nursing is very, very important to Noah and who are willing to work with us.  When Noah couldn't nurse on Tuesday he was very clearly hurt and confused and kept keeling over in my arms to snuggle into a good nursing position. 

We also want to know if we can coordinate any needed biopsies with the feeding tube surgery so that we can avoid another hospital stay.

We keep getting reports of Noah being added to many, many church prayer lists and we appreciate it so much!  We have also had emails from people asking if they can link to this blog from their websites or in their email sig-files.  That is just fine - we basically won't say "no" to someone who wants to encourage other people to pray for Noah.

On that note, please take a second and leave a note to let us know you were here.  We read and appreciate every note and they really encourage us!  I would love to add one of those maps where people can mark their location, but I don't know how.  If anyone does know how and wants to email me, that would be terrific. 

Thank you for your prayers and love.

Blessings,

Kate, Jeff, and the children

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Posted by Anonymous

continually keeping all of you in prayer
God grant The Phone Call has some good news.
Susan in VA (SHS)

http://shushan37.blogspot.com/

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Posted by Anonymous

I will continue to pray for you here in Concord, CA. I think about you and your little Noah often. I have six children and cannot imagine what you must be going through. God bless you Kate and Jeff, and Noah.

Amy in CA

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Posted by Anonymous

Dear Kate & Family,

I have been reading about Noah's journey and keeping all of you, especially little Noah in my thoughts and prayers. I'm sure there is a big healing energy buzz around your family with all the folks who are thinking of you all :-)


Warmly,
Natalie in Calgary, Alberta CANADA

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Posted by mamakven

Dear Kate and family,

Please know i am praying for you, and keeping an eye out for your sweet little guy.... he has a soft spot in my heart as we were pregnant at the same time an he was born only a month or so later than my little Leif, ((((((((((Big hugs)))))))))) to you all.. i wish i was closer so i could help you guys out somehow

Lots of Love,
Rebecca Kvenvolden

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Posted by Maureen S

I joined the notebooking list recently. I have not been active in posting to it as I am new to notebooking. I have been reading all of your blog entries though and hoping and praying for the best for all of you. It breaks my heart to hear Noah's story, but he couldn't have asked for better parents to nurture him physically and spiritually. As a positive note, I coached a boy who had a permanent feeding tube and it didn't slow him down at all!

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Posted by Anonymous

Kate, Jeff & Family -
Will continue to keep little Noah & all of you in my prayers. I will pray that you have peace & wisdom in all the decisions you have to make regarding his care.
Lisa in ME (from SHS)

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Posted by ThoughtfulMom

I'm still praying for complete healing for Noah - and that this turns out to not be mitochondrial disease - but if it is mito, then good nutrition will be of upmost importance for him. It is for all mito patients. A g-tube will make eating easy for him, and it will allow an easy entrance for medications as they are needed also. G-tubes are easy to manage - much easier than NG or OG tubes.

For our oldest son, the muscle biopsy and g-tube placement were done under the same anesthetic when he was three months old. Maybe you can get your medical team to accomplish the same thing?

As I say, I continue to pray God's will for Noah and for you.

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Posted by Anonymous

We are praying for Noah, and your whole family, here in Iowa. Our 3rd child was born 8 weeks early with a heart problem, so we've travelled down a similar road. (She's now 7, had heart surgery almost 2 years ago and is healed. Praise the Lord!) Praying for healing for sweet Noah, and wisdom for the doctors, and for good rest and peace and comfort for ALL of you!!
Love, the Bender family

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Posted by mom2two

I can't imagine the emotional and physical roller coaster you must be on right now. But God does know the path you are on and He is there every step of the way. I pray that you and your family can rest in His comfort through the 'season' of life that He has you in.

Yvonne :o)

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Posted by Lachney5@juno.com

Hi Kate,
I'm putting Noah on our Sunday School prayer list in the morning. We will definitely be praying for this little guy. He is really a sweetheart.
Blessings,
Penny

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Posted by Anonymous

I became aquainted with Grandmother Carol several years ago while visiting IBC Hospital in Tijuana, Mexico. She has shared with us about Noah and I wanted to let you know that I have asked my S.S. Class to pray for him as well as our church Intercessory Prayer Room. We are praying for you, his parents, as well as his siblings and grandparents and wisdom for his doctors. God Bless each of you.

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Posted by Anonymous

My daughter, now 14, was tube fed for 4 years.
Yes, he should be able to nurse on demand. We would feed our Amy and "top her off" w/ bolus tube feeding. We would also use a pump over night.
They may limit the amount he nurses if its too tiring for him. Eating was exercise for Amy..she was loosing more calories than she was getting.
One thing I need to let you know that another mother told me. Sometime shortly after surgery, you will wonder what int he world you let them do to your baby. But in a few days you will be SO glad you did it. I found this mother to be absolutely right.
I'm glad you are skipping the ng tube for now. You are wise to try to get them to coordinate things.
DO ask around for who is the best PEDIATRIC ANASTESIOLOGIST and request he/she does the surgery. Ask parents, surgical nurses....
And insist that your surgeon, your feeding team, your GI dr. is a PEDIATRIC specialist. Babies and children are NOT mini adults. Their bodies do work differently.
Please feel free to email me privately.
Monique

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Posted by Anonymous

Oh Dear Kate,

God Bless you and your family and I continually pray that He will give your family all the strength and healing needed. Little baby Noah is so precious!

I will also pray for the doctors to understand and address all your concerns in a gentle and loving way and that you and your son can continue the closeness of nursing.

May God keep you in His arms!

Susan M.

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Posted by loveoflearning

Jeff, Kate, and family, Please know that we are still earnestly praying for Noah and your entire family as well as all the medical people involved. We are praying for complete healing for little Noah. I don't know anything about feeding tubes and the like, but it sounds as if this g-tube will be an answer to some prayers, especially if it does not interrupt his nursing and his ability to verbalize. My two daughters (8 & 6) never miss an opportunity to pray for Noah or to ask others to pray for him.

God Bless,
Karin Owens in Arkansas

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Posted by Shannon in Florida

I'm praying for Noah and your family. I have a son with Cerebral Palsy who has a g-tube. He has been so much healthier since we had it put in. He continues to get food by mouth- on demand. The g-tube is for his liquids only as he was choking everytime he tried to drink. I'm absolutely certain that Noah will be able to continue nursing on demand. We will continue to pray for your family as you go through all of this. Be assured that God is at work!

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Posted by Elise in TX

The first thing I do each AM is check if there
is a new update on Noah...my heart is with you, Kate. Through the last couple of years on the Notebooking group I've always looked forward to your personal posts. Your advice is gentle and wise and I always think what a neat person you seem to be. I've been praying for Noah and you all...you seem like family friends! May God continue to strengthen, comfort, encourage, and lead you.
Love in Him,
Elise

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Posted by Anonymous

Noah and your family have been my thoughts and prayers as you go through this. We have been through some very rough health problems and I understand how frustrating it is trying to keep things feeling normal and taking care of everyone's needs when you are a victim to the demands of the illness. I hope you are able to balance everything so things don't feel so out of control. Don't forget to take a few minutes for yourself every day even if it is a 5 minute walk alone because in the long run, it will help. From Heidi, Allen, Texas.

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Posted by Anonymous

Hi Jeff and Kate (and "gang"). Just wanted you to know that we're all praying and "pulling" for Noah and you both, as well as the family, as you experience this "bump" in the road. Larry and Carol are keeping us posted.
Love you ALL,
Susie B @ CBC Hanson

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Posted by Anonymous

Praying for your sweet Noah.Have thought much about him and your family since I first found your blog.May God continue to give you strength and grace in the coming days.Lean upon Him-He is our Rock-our Hope!
Joslyn in Wisconsin

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Posted by Anonymous

God is always watching over you. May you be blessed with His comfort and care and know that no matter what, you are loved by many.

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Posted by wencla

Kate,

We are praying for you, Noah and your family! He is such a precious little boy!

I have know several families who have children on g-tubes and it has been a blessing to see their children able to gain weight, etc. One such friend's daughter (multiple medical problems) is now almost 4. She is beginning to be able to eat some regular food and they are so happy about it!

I will continue to pray that God will comfort and guide you all through the process! He is our healer, our provider, our comforter and our Father! He loves Noah and you more than you can ever imagine!

God's blessings upon you all! It is awesome how God worked out the whole situation with your hotel and that Noah didn't have to have the invasive procedures that were expected! God is taking care of him in ways we can't even comprehend!

In Christ's love,
Wendy

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Posted by Anonymous

I rarely visit blogs, but I stumbled across your story on another homeschool message board. I will pray for your baby Noah.

I have a 15 month old daughter with a heart condition, several developmental delays, and a g-tube fore feeding. If I can answer any questions or if you just want to chat with someone who sort of understands, feel free to e-mail me at schwamb@ cox. net.

Cristi

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Posted by Laura

Hi Kate and family!
We are praying for Noah and the family!
Laura
from SHS

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Posted by Anonymous

I just wanted to tell you I am keeping Noah in my prayers even over here in Germany. I told my three boys about him and they wanted to pray too:) They are 6,4,and 11 weeks old

Have courage!

Dagmar

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