Our Quiverfull - New to our blog? Read This First!!

Jul. 3, 2007

New to our blog? Read This First!!

People have been requesting pictures of Noah and our family so we put this slideshow together. Scroll down past the images for the rest of the message.

This post is going to be a little bit different, and our long-time blog readers may even want to skip it. We often get emails from readers who are new to our blog, and who find that reading a new post is like starting a book in the middle. Some enjoy going back and reading lots of old posts to catch up, but many others just don’t have time. In this post, I am going to try to summarize Noah’s story and what has been going on in our lives. I’ll be adding it to the links section on the right so that new visitors can get to this post easily whenever they find our post, and I will edit/update this post to reflect major changes as they occur. We hope this will simplify things for our many new readers.

We are Kate and Jeff Estes, and we take turns writing this blog. I (Kate) do most of the writing, but Jeff does the funniest writing! We have seven beautiful children ranging in age from 14 down to Baby Noah who will be one year old on August 10. We won’t tell you how old we are - LOL. We have five boys and two girls and they are the joy of our lives. Jeff has a full time job working as an Organization Development Manager of an iron foundry. The foundry melts iron to make parts for cars and other machines, and Jeff is in charge of all of the training, teaching, and personal development of all of the employees. He is an incredible teacher and very good at his job. (Proud wife bragging about wonderfully gifted husband!)

Jeff and I also own a homeschool supply company called Hands and Hearts. You can see our home on the web at www.handsandhearts.com . We develop and create hands-on living history project kits, and we also sell a few hundred other very carefully chosen homeschool resources. Our business also sponsors a Yahoo group and a newsletter. Jeff and I both work hard with our business along with some great employees who do most of the day-to-day work. We also have several homeschool graduates, students, and moms who work for us – they make a wonderful team and they are like family to us.

We started this blog as a general family/homeschooling blog, but within days of starting the blog little Noah became gravely ill and he has become the focus of the blog. I hope that one day there will be more homeschool articles, recipes, and funny family stories than there are prayer requests, but right now we are overwhelmingly thankful that this blog has given us a way to update friends and family about Noah’s complex and ever-changing needs.

Noah came into this world with a bang on August 10, 2006. When Noah was a few months old, he began a serious and rapid decline in his health. Since March, 2007 he has been hospitalized 5 times and has had two surgeries. He cannot and will not take anything by mouth except to nurse, but because he is very weak physically he is not capable of nursing enough even to maintain his hydration. In the middle of May, 2007 he had surgery to insert a feeding tube (g-tube) so that he can receive nourishment directly into his stomach. He tolerated the surgery well but does not tolerate feeding well. Most children with g-tubes are fed in a way that mimics normal baby feedings. They receive six 10 oz. “meals” of formula several times a day over a period of 10 minutes or so like a bottle-fed baby would. This is called bolus feeding. Noah is completely unable to tolerate bolus feeding. He is attached to a feeding pump 24 hours a day and is fed a very special ($25 dollars a day worth of special!) formula continuously at a rate equal to 5 oz every 4 hours. Even though our insurance isn’t paying for his formula and feeding tube expenses, we are blessed in that we are currently receiving some financial assistance for these items. We don’t know how long the funding will last, so funding for the formula is an ongoing prayer request. It is a challenge to manage a baby who is always attached to a pump! The pump looks a lot like the sort of pump used for an I.V. and his milk is stored in a bag that looks like an I.V. bag. The bag, pump and tubing fit into a special bag that we have to pick up every time we pick him up. It is run by battery power when he is awake and plugged in when he sleeps. We are blessed that he really doesn’t ever try to pull out his pump, but we have snagged in things several times and snapped the tubing. That is always a messy disaster!!

During the first 4-5 weeks on the pump, Noah was gaining weight beautifully with his feeding pump. Before he got the pump he was truly emaciated and you could see most of the bones in his body. It was heartbreaking. He started to fill out immediately after his surgery and was gaining more than a pound a week! In the past couple of weeks his weight gain has nearly stopped, so that is one of our primary concerns right now. If Noah has a mitochondrial defect (more about that below) it could explain the weight gain issues.

Noah is by far the easiest and most pleasant baby we have ever had. He brings tremendous joy to our family. He loves everyone he meets and smiles all of the time. He is very generous with his slobbery kisses. Even though he has had dozens of I.V. placements and over 100 blood draws, he is never resentful or fearful toward his doctors and nurses. In fact, he has a reputation at three hospitals and several doctors’ offices as a world class flirt – and he is so good at it that everyone with whom he flirts is convinced that he or she is his personal favorite. His affectionate personality is made more powerful by his huge blue eyes and fluffy blond hair with a big cowlick in front!

Noah has significant motor delays. At almost 11 months he cannot roll over or creep. He is just starting to briefly maintain a sitting position when placed in one. He is a very sleepy baby and needs to nap for a few hours after being awake for about an hour, even though he may not do more than cuddle and nurse and chew a toy during his awake time. He gets sick easily and when he gets sick he gets extremely sick. He is allergic to five different families of antibiotics, so we have to work hard to keep him healthy. When he nurses or sleeps he sweats so heavily that his sweat will drip off my arm or soak a folded towel. If he sleeps on a dark sheet we can see where he leaves a raised ring of evaporated salt and other minerals from all of his perspiration. He has some other G.I. issues that need further testing and he may need more surgery to correct some of them.

Extensive testing has ruled out a lot of potential diagnoses. He doesn’t have cystic fibrosis. A recent trip to MUSC Children’s Hospital in Charleston has ruled out any serious cardiac issues (he does have a small heart defect but it isn’t causing these symptoms). He doesn’t have a chromosomal abnormality. He is strongly suspected of having a mitochondrial disease and his geneticist is arranging for us to take him to Emory in Atlanta to be tested for mitochondrial defects. The test requires yet another surgery under general anesthesia. A large muscle biopsy will be taken from his thigh. This isn’t a tiny sample. The incision will be more than half the length of his thigh. Some of his doctors have suspected a mitochondrial defect from the beginning, but because the test is so invasive, part of the diagnostic process involves ruling out every other possibility before doing the biopsy. There are many different mitochondrial diseases and they vary in severity, but they are all terminal and degenerative. Some just move faster than others. If Noah does have a mitochondrial defect, the doctors might be able to narrow it down to a specific syndrome with a known prognosis, or they might not. If you are very interested in mitochondrial diseases, a Google search will yield lots of information. I won’t take up room here unless Noah is eventually diagnosed with one.

Of course, with six brothers and sisters, Noah certainly doesn’t exist in a vacuum! Recently things have been even busier than usual at our house, and there are several ongoing dramas that are being regularly updated on our blog. When they are resolved, I will probably just remove these stories from this overview post, but for our new readers who may wonder about the stories behind the updates, here goes!

Our four year old daughter, Sarah, was recently attacked by a squirrel that is believed to have been rabid. It charged her in our yard (she says it tackled her!), climbed up her leg, dug its claws into her little hand, and bit her fingers to the bone repeatedly. Officials were unable to catch the squirrel for testing but are fairly certain it was rabid because of its behavior (attacking Sarah, attacking but failing to bite our ten year old, running into things, biting itself, etc.) As a result, she is currently undergoing the rabies series which has been VERY hard for her. Not only are the shots excruciating painful, but she has had some adverse reactions to the vaccine. One of the reactions earned her a night in the E.R. because she was delusional, hallucinating, biting herself, etc. We are enormously thankful that the other episodes have been far milder.

A couple of weeks ago our ten year old son Matthew slipped and badly sprained his ankle and probably suffered a hairline fracture of his fibula right above his ankle. So far he is healing miraculously well.

The large 15 passenger “big red van” that our family needs for transportation is currently gravely ill. It may be terminally ill. Because there was no earthly way for us to afford the repairs needed to make it drivable again, my hard-working husband accepted the offer of a friend to help him learn to fix it himself. They have been working SO hard on this, but to no avail so far. Our friend is a perfect genius with cars and knows “how” to fix our van, but because it is so old (1993), they are running into parts that have literally rusted into place. We are without family transportation at this time and are earnestly praying that Jeff and his friend will be able to fix our poor old van! When the biggest issues are fixed so we can drive again, we will need to pray about our future transportation needs. We bought this very old van for cash about a year ago because we needed something that would hold our entire family. Since we live in a small town and I seldom drive more than 5 miles to go anywhere, the van has been great for us. We obviously never anticipated the astounding number of out-of town trips we have had to make for Noah’s doctors’ visits and hospitalizations. We have just asked too much from our faithful red van! We are thankful that God is allowing Jeff to work on repairing it at a price we can manage, and know that God will give us wisdom about what to do about transportation in the future.

I think those are all of the main, recurring things that currently appear on our blog. The other thing you will see in nearly every post is a blessing list. Jeff and I truly embrace James 1:2-4, which says “My brethren, count it all joy when ye fall into divers temptations; knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.” Those verses and other precious verses in James became very meaningful to us during my difficult pregnancy. The fact that Jeff was teaching through the book of James at our church (did I mention that he is the best teacher in the universe??!!!) was such a blessing and encouragement to both of us – so much so that we named our baby Noah James Joseph. The phrase “count it all joy” has become like a family catch phrase, and shortly after we started this blog we decided to end each post by literally counting our joys and blessings. This is a very real thing for us and it doesn’t always “look” ultra spiritual or pious – in fact, Snickers bars and the Red Sox have appeared in more than one blessing list! We are just ordinary people who serve an extraordinary God and want everyone to know all of the deep and meaningful AND fun and silly ways He is blessing us every single day. If life ever calms down enough for me to start posting mundane things like recipes or homeschooling tips, I can’t promise that I’ll list ten blessings along with my chocolate cake recipe, but I do know that right now in these trying days that I need to very intentionally keep my focus on all that is so good in our lives.

I hope this loooong post is a help to those of you who have wondered about some of the things you have read here. We want to keep this updated and hope that it will continue to be a blessing to our readers. If anyone still has any questions after reading this, please leave your question in the comments section (or email us) and we will promptly update this post to reflect those questions.

Love, Kate and Jeff and the children

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Comments

Jul. 3, 2007 - Love the slide show

Posted by Kathleen

Dear Kate, peace and joy. I love being able to finally see allll of your family. The slide show is great. Keeping you and yours in prayer. I know how long it takes to be able to communicate through the 'net, and really appreciate your dedication to keeping us updated.