Our T1D Story, Part 2

If you missed Part 1, you really should go back and read that post first.

Our Story (Part 2)

Knoxville, TN

March 2015

    Asher was four when (we thought) he was having one of his growth spurts.  He had had them before, but this one seemed to be especially voracious.  He even said at one point, "I'm just so hungry, can't you wake me up at night and give me a snack?"  For Philip's birthday in March we took the family to Tom+Chee where Asher ate an adult sized grilled cheese sandwich with pulled chicken added and when he was done he was still hungry!  We couldn't believe how much he was eating, but we chocked it up to a growth spurt, laughed about it, and kept on with our lives.

    Now in retrospect other things were going on: in Sunday School Asher was constantly asking for water and he had a few nighttime accidents where he didn't make it to the bathroom before wetting his PJs.  At home he had free access to water and could help himself anytime so I never noticed that he was drinking more.  He also could get new underwear and PJs by himself and he wasn't wetting the bed, so I honestly didn't notice how often this was happening.  As long as I could remember he would get up in the night to go potty so I didn't think anything of it.

    After Philip returned for a business trip in March he began putting things together and one Sunday night when Asher got up around 11pm to go to the bathroom Philip said he was going to test his blood sugar.  To my shame, I laughed.  I had forgotten that increased hunger/appetite was a symptom of T1D. We also had been (incorrectly) told that T1D was not hereditary, so I didn't think there was any chance of our kids ever developing diabetes.  

    Philip tested Asher's blood sugar and shockingly the meter said that his sugar was "too high" to be measured by our at home device.  I'm going to be honest, I was still in complete shock and disbelief.  I called our after hours nurse line which refers us to the nurse's desk at Children's Hospital.  The first nurse agreed with Philip...most likely Asher had T1D since mg/dl is mg/dl no matter how old you are and T1D was the only way to explain a high number that would be above the meter's capabilites.  The second nurse gave me false hope, saying that usually a reading like that meant that the test had been performed incorrectly, but since Asher did have these other symptoms we should probably be seen right away.

   Driving into the ER we prayed for a miracle, a mistake, maybe this was just a big misunderstanding and it could be explained by some other sickness.  Hours later at the ER when Asher's blood sugar was re-checked all my hopes came crashing down around me and I clung to the verse that Isaiah wrote, "“For My thoughts are not your thoughts, Nor are your ways My ways,” declares the Lord."  I never would have planned this for my baby.  A life of injections, extra doctor visits, counting every meal and snack, never really eating "freely" again.  The thing I feared most in that ER room was that Asher would lose his joy.  My Father smashed that fear a few minutes later when Philip arrived.  He told Asher that he indeed did have diabetes to which Asher replied, "I have diabete, Daddy has diabete, EVERYBODY got diabete!"  He was in a sleep deprived state of silliness but Philip and I couldn't help but laugh at his joyful reaction.

   Unlike most first time diagnosed patients the on-call endo decided to let us go home since we knew how to count carbs and we would come back the next day for our two-day long training with his new diabetes team.  The team includes his endocrinologist, nurse educator, dietician and counselor.  Every time we visit the clinic (once every three months) we have access to all of these experts which makes the transition to caring for a child with T1D so much easier.

A picture of Asher and I at the ER the night of his diagnosis.

   I'd love to share more info about our story, so if you have any questions please ask them!  I did share our story for one reason and that is to make people more aware of the symptoms of T1D so that no more children go undiagnosed.  Because of Philip's gut feeling we caught Asher's diabetes super-early.  A few months later and he would have been much more sick from this disease.  Upon diagnosis his HbA1c (three month blood sugar average) was only around 10 and they usually don't see kids diagnosed until it is around or above 13.  A non-diabetic's HbA1c is usually around 5.5.  This means that his average blood sugar was hovering around 250 instead of 120 as a non-diabetic, but better than 350 where kids are more often diagnosed.

   If you ever have any worries about your child's symptoms ask your doctor to test their blood sugar, it only takes one drop!

Our T1D Story, Part 1

A few weeks ago two children died because of undiagnosed Type 1 diabetes.  Their stories are heartbreaking, tragic and stirred in me a want to tell our own story so that maybe, just maybe, someone out there could know the symptoms of Type 1 and be able to get a child (or adult) checked before they get too sick.

Our Story (Part 1)

Lafayette, LA

1996

    I needed a date for my Junior prom and my friend suggested asking a boy in our math class.  His name was Philip and he was cool (he liked Pink Floyd) and he did make me laugh, so I decided to ask him.  When my mom and I picked him up at his house and I saw him for the first time in his tuxedo I was blown away!  He was crazy handsome!  Soon after prom Philip and I started dating and 4 years later we got married...but that's another post. 

     I noticed a few things about Philip that were unique: he couldn't sit through a movie without going to the bathroom and he drank almost constantly (during movies, phone conversations, etc.).  What I didn't know is that Philip had been losing weight, about 20 pounds in just a few months.  No matter how much he ate he just kept losing weight. He had a big appetite, but I just thought this was part of being a teenage boy.  We still joke about how he use to eat two whoppers from Burger King and still be hungry.  His mom had taken notice of these symptoms and after contacting the pediatrician Philip was diagnosed with Type 1 diabetes and sent to an endocrinologist.  At his first blood test his blood sugar was over 700.  The normal blood sugar for a non-diabetic is 70-120.
   After diagnosis Philip was put on a special diet that consisted of counting carbs for each meal and two daily injections of insulin.  Later, after we were married Philip got an insulin pump, but he still needs to count carbs at every meal.

   Philip had experienced some of the symptoms of T1D, but here is a longer list:

• Extreme thirst
• Frequent urination/bedwetting
• Increased appetite
• Drowsiness and lethargy
• Sudden vision changes
• Sudden weight loss
• Fruity, sweet, or wine-like odor on breath I would say their breath smells like acetone.
• Heavy, labored breathing
• Nausea/Vomiting
• Stupor or unconsciousness

    "Knowing the warning signs for type 1 diabetes could help save a life! Type 1 diabetes can often go undiagnosed in its early stages because the symptoms can be mistaken for more common illnesses, like the flu....It is extremely important to receive medical attention—misdiagnosis or leaving your condition untreated can have tragic consequences, including death." -JDRF  The good thing about T1D is that it is easy to test for, as a matter of fact, you only need one drop!

Here are some important facts about type 1 diabetes:

• It is an autoimmune disease whereby insulin producing cells in your pancreas are attacked and killed.
• No one really knows what turns Type 1 "on", but we know it isn't diet!
• T1D patients have a lifetime of insulin injections ahead of them.  It is the only "cure" but we are so grateful for it!  Before the discovery of insulin in the 1920s diabetics would only live for months or maybe a few years after diagnosis.
• Even though T1D used to be called Juvenile diabetes, you can really be diagnosed at any age.

Philip has now had diabetes for over 19 years and his day to day life looks much like yours or mine!

Tune in tomorrow for Our Story (Part 2)!

Our Christmas/New Year's Letter

I had planned on doing a Christmas card this year, but alas, I ran out of time.  I hope you enjoy this blog post instead!

First I'm very happy to report that 2013 was a good year for us, we feel extremely blessed.

What's Old
Philip and I celebrated 13 years of marriage this past Spring.  It was neat to think that we have been together for 17 years and we have lived in Knoxville for 11 years.

What's New
For two and a half years we have been attending Grace Community in Maryville, TN (about 30 minutes southeast from us).  When we heard they the elders were considering planting a church in West Knoxville we were very interested.   Well, since June of this year we have been meeting with 10 other families weekly and we plan to begin meeting with our new church on Sunday morning in late February.  We are excited about this new adventure!

Philip
Philip has had a busy year finishing up his first year of Shepherd's Institute in the spring and starting his second year of SI this fall.  So far he has had to write and preach two 15 minute sermons, with one last sermon due in January.  Work is going well, he continues to work on energy efficiency in residential buildings at ORNL.

Bridgette
This past year I have continued to be a full-time home manager, but starting this January I do plan on taking a very part-time position at Ethan's school helping them keep their website up to date.  The challenge of homeschooling two days a week while raising two other little ones is enough to keep me busy.

Ethan
Ethan graduated from Kindergarten in May last year and he is enjoying First grade so far.  In addition to placing third in the art fair he also recently got second place in his classroom spelling bee.  He has really developed a love of reading and enjoys spending nap time reading while his siblings sleep.  When he isn't reading, you can find him outside playing in his fort, or upstairs building Legos with his brother.  He also lost his first tooth this Thanksgiving!

Asher
I can't believe it was only January of this year that Asher became a fully potty-trained kiddo!  I find myself often forgetting that he is only three.  He loves having school along side his big brother on Tuesdays and Fridays, but loves P.E. time the best.  This past year he has learned his colors and that his name starts with "A".  We'll work on the rest of the alphabet later this year!

Evangelynn 
In January of last year Evangelynn was just beginning to crawl.  Now she runs from place to place trying to keep up with those "bru-ders".  She reminds me of Ethan everyday.  She talks more clearly than I remember her brothers talking at her age and she loves to be clean!  Napkins, wipes, baths: she just loves to be clean.

As 2014 has rapidly descended upon me I am reminded of our many blessings.  As we finished potty training one last year, we will begin again with a new little one this year.  As I watch my 6 year old read with gusto, I think of the work ahead teaching the younger two little ones their colors, letters and numbers.

Trying to keep an eternal perspective while the daily tasks of life seem anew each morning is difficult, but I pray that we all strive to fix our eyes upon the cross.  Remembering what Christ did for us on Christmas is important, but remembering what He did for us on Easter is the ultimate source of our hope.

On the first day of first grade...

Well, he's off to school!!  I can't believe my first born is six years old.  Unlike the last two years Ethan was very excited to go to school today.  Here are some pictures from the first day of first grade:

And in case you've never heard the song:

First day of Kindergarten!

After weeks of fretting and saying he did not want to go to school (because he would miss me), I was delighted to hear Ethan say, "Mommy, I like my new school."

He was even surprised when he got home,   He does have one girl form his K4 class, but more familiar are our family friends twin boys that are in the class.  I asked him if he made any new friends and he said that he just hung out with the old ones :)

Sweet moment

Yesterday Philip was changing Asher's diaper when he discovered there were no diapers downstairs. Ethan said, "Don't worry Daddy!". Then he ran upstairs to get a diaper for him. On the way up the stairs he shouted down, "Do you need wipes too?". Sweet boy!

Heard from the backseat of the van....

Evangelynn: *sneeze*
Asher: "Da-doo bay-bay"
Evangelynn: *sneeze*
Asher: "Da-doo bay-bay"

He was blessing the baby!! How cute is that?

Happy Father's Day!

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Saturday morning snuggles

Sleeping in her favorite place:

PKU Normal

The results of the state screening came back normal!!

Praise God!

No news is good news

I know since we have gotten home I have neglected my blog writing.  We really have had nothing new to share.  We are home and are settling in to our new normal.

The boys still love Evangelynn!  They love holding her and telling her good morning and Asher loves to tell her "Hi-ee" over and over again.  I have a hard time keeping track of what day it is since I'm up during the night every three hours nursing.  I was talking to Danielle yesterday and it made me tired to think of how little sleep I'm actually getting. 

Evangelynn did give us a scare last week when the pediatrician called and said we needed to come in right away!  Her PKU screening that is done by the state came back borderline normal so they wanted to re-do the test and send her to Children's for some additional blood work.  The blood work at Children's was looking for symptoms of the borderline condition and it came back normal.  Also, one of the symptoms would be Evangelynn not waking up to eat (we don't have that problem) and her losing weight.  On Monday we went back for a weight check and she actually gained weight and was up to 6 pounds!  We are now waiting the re-screening results to come back, but her doctors seem confident they will be normal.

I had a few quiet moments to write this because Asher has re-taken up his morning nap.  Now I'm going to go enjoy the rest of this quiet with a cup of instant coffee (better than no coffee) and an apple fritter.

Have a good day!

Ethan's lunch

Last Monday I was still in the hospital (unexpectedly) and Philip had to make Ethan's lunch for school.  After assembling all of the items Philip called Ethan over and asked, "Is this how Mommy packs your lunch?"  Ethan replied, "Yes, except she doesn't put Swiss Cake Rolls in it."

I have a feeling Ethan will be requesting that Daddy make his lunch in the future!

Bath time

The other adults in the family chose to go to McKay's this afternoon, but for over three days I've been wanting to give Evangelynn a bath.  Instead of waiting I enlisted Ethan's help as a photographer.  I think he did a great job!

Homecoming!

We are being discharged!

We are being discharged!

Last night our great nurse Stephanie changed us from rooming out to rooming in at around one in the morning.   This was great because then it "counted" that I had roomed in with her and it allowed us to go home a whole day early!!  I was so excited to be with her all the time and not have to leave during shift change.

The siblings meet "face to face"

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Rooming In!!

When I came to the hospital this afternoon the doctor gave us permission to start breastfeeding. I could have hugged him! When feeding time came around Evangelynn nursed!!! Since I want to continue nursing I am choosing to room in at the hospital tonight. Really it is called rooming out since Evangelynn is still in her room and I have a room of my own.

She is on room air and when I left her she was on less than half of a Liter of air per hour. She has been off of IV fluids since last night and she even got her PICC line out! She has also been released from UV treatment for her jaundice.

When I left this afternoon I didn't know I was staying so Philip had to repack my suitcase and bring me some clothes (along with all the stuff I forgot this morning anyway).

UPDATED: Evangelynn now has no tubes! PICC, feeding tube and nasal cannula are gone!! Evangelynn actually removed her feeding tube by herself while we were nursing :)

At this time it looks like she will be released in 24-48 hours. We are so excited!! One of the things that could stop us is her bilirubin levels, so please continue to pray that we glorify God in everything and that Evangelynn's bilirubin continues to go down.

-BB

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."-C.S. Lewis

The Daily Report

Yesterday I came home from the hospital. It was good to eat dinner with my family but it was hard to leave my baby girl. When I called last night to check in on her our night nurse (who has been with us for a couple of nights in a row) asked right away if I had gone home. Apparently before her first feed of the evening her respirations were low enough to try eating by mouth. Little stinker :)

This morning her respirations were still a little high so I waited until after lunch to come in. The doctor just came by and asked if she was taking a bottle yet. I told him no, because I want to breastfeed. "Okay, well let's start that at the next feeding."

I am so excited!! So right now I'm waiting for my first date with Evangelynn which is scheduled to begin at 2:30. If she does well we will start the process of me rooming in with her and hopefully we will be home by the weekend!!!

I praise the Father because He is good. He is always good, even when circumstances are not what we would have them be, but at this moment I could not wish for anything more.

-BB

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."-C.S. Lewis

The Daily Report

Evangelynn continues to improve!  She is now just on room air and 1L of air in her cannula.  She is still breathing a little too fast (in the 60s) to get to try to nurse but her sucking reflex when she is hungry is alive and well.  It makes me so happy to watch her suck, suck, suck on a paci while the milk goes down the tube to her belly.  She is getting 14mL now of my milk every 3 hours (increasing by 2mLs every other meal) which is great.  I'm pumping at least 60mL every two hours so for now I'm ahead of her and staying that way.

Her bilirubin was up today high enough to warrant her being under the UV light.  This should help the jaundice resolve itself.

That's all I know for now.  We are kind of just in a holding pattern until her respiration rate comes down low enough to nurse.  I go home this afternoon and will spend the night with my family.  The next few days will totally depend on Evangelynn.  The moment she is breathing slow enough to nurse I plan to come back by her side and not leave her until she comes home.  That may or may not work for nights depending on what facilities they have available.  Philip is also especially worried about me wearing myself out, but that's good because he will keep me in check :)

I'm still taking pictures every time I'm in the NICU, but you'll have to check smugmug later tonight to see them because they are so big I have to wait until I am at home to upload them.