Sunday, May 18, 2014

Lilliana Faith's Birth Story

It's true! Baby number 8 is here! We evened things out a little bit by adding a third girl to the mix, and what a delight she is! Even though I was labeled high risk due to "advanced maternal age" and having had so many pregnancies, my pregnancy went off without a hitch. Once I got over my sickness, things went along just great. I had minimal swelling and very little pain. They kept a close eye on her and checked her heart out a couple of times. All exams declared her healthy. I am used to being induced early for various reasons, and naturally assumed I would be induced early this time as well. I had a new doctor, though, and he said he wouldn't let me go past my due date, but didn't really want to induce me early. My due date was April 30, I was scheduled to be induced April 29. For weeks, I had very regular contractions. There were several nights that I thought for sure this was it and we would be heading to the hospital. I was excited because I have never gone into labor on my own. As my due date neared, I got worried. I know cord accidents are more common in the late part of pregnancy, and honestly, I just wanted her out, safe and sound. She would slow way down for awhile and give me many scares. I'm sure she was just sleeping, but nevertheless, it kept me kind of nervous. At 37 weeks I was checked and was 3-4 centimeters dilated, but she was pretty high still. With all the contractions though, I was sure she would come down on her own. Alas, it wasn't to be, and at 5 am on April 29, we headed to the hospital for my induction. Because she was so high up, the plan was to start pit to bring her down then break my water. The doctor had explained that because I had had so many babies, we had a higher chance of cord prolapse, or of her putting her hand above her head if we broke my water before she dropped. They took us to our room and started all the paperwork, while another nurse started trying to place my IV. The first two blew right away. Let me tell you, they were the most painful IVs I've ever had, and one of them caused me pain for days and throbbed through my whole labor. Finally, the third IV was in to stay. After the two hurt so bad, I was near tears telling the nurse I wasn't ready for an IV. I have a terrible fear of needles and have always said the IV is the worst part of childbirth, this wasn't helping at all! After the IV was finally placed, the nurse started running fluids so if I decided to get an epidural right away, I would have my bag of fluid in. All of this took until about 6:30. At 6:30 the nurse was ready to check me to see what I was starting out at. She checked me, said I was still about 3-4 cm. At that point, we heard a big commotion in my belly as the baby swam away from her. We all joked that she didn't like being messed with. As we were laughing, the nurse proceeded to try and find her heart beat again. It wasn't where it had been. Suddenly, we were hearing the most bizarre, almost hollow beating. I thought it was my heart beat, but it didn't even sound right for mine. I asked what was in my belly and what was happening. About the time I was asking, the nurse was grabbing my wrist to feel my pulse. Suddenly, she was pushing the call button asking for help. Another nurse rushed in. The first nurse asked her to check my pulse. As the nurse was checking my pulse, nurse A was putting oxygen on me. Nurse B said, "about 80". Nurse A said that's what she thought and pushed the call button again. Things were suddenly a bit frantic. Nurse A put her hand inside me and was rubbing baby's head, nurse B was rubbing my belly. Nurses were filing in like crazy. Nurse A said she couldn't safely break my water. All I could do was look at Matt, with tears streaming down my face. He was white as a ghost, so while they were working on me, I was telling him to go sit down so he didn't faint. He didn't want to leave me, but I made him. Finally, after what seemed like ages, the doctor on call came in. That was when I realized exactly what had just happened. Her heart rate had dropped into the 50s for at least 5 minutes. All of their manipulation stimulated her enough to bring it back up. The doctor said he would be breaking my water then, and putting a monitor on her head so they could watch her closer. At this point I was so scared we were going to lose her. They assured me they would be watching us very closely and that it would be okay. She asked about an epidural. Normally, to get an epidural, I need to be in quite a bit of pain. Remember that fear of needles? Yeah, that comes into play here. However, I was afraid we would have another decal and I would need an emergency c section. The nurse had told me that if that happened, they would give me a general, but I wanted to be ready and numb already, so I opted for the epidural then. By this time, having my water broken had started contractions. They weren't registering on the monitor, and that would continue the entire labor. I didn't get credit for a single contraction! The anesthesiologist arrived pretty quickly. He started my epidural pretty easily. However, I still had tons of pain on my right side. It never went away. The plan was to roll on either side every 5 minutes to keep me numb on both sides. We figured once I rolled, my right side would go numb. Instead, when I rolled, the baby had another big decal into the 50s. At that point, my blood pressure plummeted. I didn't know it though, until the anesthesiologist was back putting something in my IV. I asked what it was. I can't remember what he said, but it was something to bring my blood pressure back up. I also don't remember what it was, but the bottom number was 30. It didn't take long, and I was shivering and feeling like I was going to throw up. Matt told the nurse that meant it was baby time. About that time, my doctor finally came in to check on me. He checked me and said I was 8 centimeters, and that I needed to try and push because she really needed to come out. I was so happy to be getting her out. I kept telling them their job was to get her out safely. The nurse said her job was to make sure I was ok, I said no, she needed to make sure my baby was ok, she was more important than me. I took a breath and pushed. She was coming. Two more pushes and she was completely out, crying away. I was so relieved. She was born at 8:35 am. So 2 hours after her big decal, and about an hour and a half after my water was broken. After she was born, I felt great. Her apgars were 9 and 9. She weighed 9lbs 1.5oz and was 21 inches long. She had trouble with her sugars in the beginning and had lots and lots of heel sticks, poor baby. It was definitely a labor I never want to forget. I assume she was compressing her cord. What scares me is that when her decels happened, I wasn't having a contraction, it makes me wonder how many decels she had when she wasn't on the monitors. We are just so thankful she is here safe and sound!

Thursday, May 15, 2014

It's been way too long

Whoa! It's been forever since I blogged. Mainly due to smart phones that cause me never to be on an actual computer, but I just learned I can blog from my phone! Not real sure how pictures will work, I will have to explore more. So much has happened since I last blogged! We have now had Emily's diabetic alert dog for over a year. She has been such a blessing to us. We are wrapping up another school year. It's a big one! Matthew's last! He graduates this year. How is this even possible?? And finally, biggest news of all, we've welcomed our third sweet baby girl. Her name is Lilliana Faith and as of this post, she is 2 weeks and 2 days old. I think I will start my first real blog post with her birth story. I will try to get to that tonight, it's something I don't want to forget. I wonder if I have any readers left out there. I doubt it, but I will blog for me! Writing is great therapy! If you are still out there, thanks for hanging out for so long! I can't wait to get back into the groove!

Saturday, January 5, 2013

I remember

Today is Natalie's third birthday. I can hardly believe three years have gone by since she entered our lives.  I love her more than words can express.
When I went back into facebook, I found all of my posts about her birth and events that followed were gone.
I wrote this, because I don't ever want to lose it.

If facebook is gonna take it away, I'm gonna post it again!!
I remember:
I remember being in labor, telling the nurse she was sunny side up. The nurse thought I was nuts. When she was born, the nurse asked how I knew. DUUUUH.
I remember my labor with her hurt SO bad, they gave me a "cocktail" to take the edge off, but it made me sleep, and took away my memory. Slowly, over the next several days, I would remember. I was so sleepy when she was born I could barely hold her. I didn't ask for a cocktail that would make me forget or sleep, I asked for something to just get through the pain. I regret ever getting that.
I remember being in the elevator, smiling at her, so sure she was perfect, and telling her she was breathing so well that she would avoid the NICU.
I remember being in bed, looking at Matt holding her. She just had a diaper on. Swaddled. Matt took the blanket off to look at something, and she was blue. I told him to cover her up, she was cold. How did I not know??
I remember the nurse taking her for a bath.
I remember her not coming back. I told Matt to go check on her, I was too afraid to.
I remember Matt coming back. Telling me the nurse noticed she was dusky, so checked her O2 sats. She was in the 80s.
I remember thinking I would never forget that nurse.
I remember going to the nursery, listening half way to the neonatalogist as he told us they were moving her to NICU, that he couldn't call a cardiologist yet, he had to do a blood gas. I knew then that a cardiologist would be called, I had no doubt.
I remember the kids looking at her through the window. Thinking we would roll her passed them and they could meet her.
I remember being confused when they went the other direction.
I remember telling my mom what was going on, and the kids goodbye, then going downstairs to the NICU.
I remember walking into the NICU and seeing the doctor on the phone, talking about transport, and if that had to be done, how did he arrange it. It was his first night at this hospital. His daughter's name was Natalia.
I remember the cardiologist coming in. He had already been called. Her gasses were bad. I knew it was inevitable.
I remember sitting in the cold, empty hallway with Matt. In silence. We both knew.
I remember it taking too long.
I remember telling Matt that something was definitely wrong, that I knew it wasn't TAPVR, because how could it be? I just knew something else was wrong, prayed it wasn't worse.
I remember a nurse coming out in the hall, after about an hour. She asked us to come to the conference room so the doctor could talk to us. I'm not sure how I got up and walked there.
I remember the card asking us what type of TAPVR Zachy had, and asking us about it. I wanted to tell him to stop asking about Zachy, to tell us about Nannie. Then he did.
I remember him shaking his head in disbelief, "your daughter has the same exact condition as your son"
I remember joking about playing the lottery..if I wasn't joking I would break down right there.
I don't remember anything else about that meeting, except that it was long, and transport was on their way, and all I wanted to do was get out of there and to my baby, we were wasting time.
I remember going to her, holding her, and quietly sobbing.
I made Matt take a picture of her chest, for all I knew, it would be the last picture without a zipper.
I remember transport getting there. So much went into moving her one block away.
I remember them wheeling her away, and just standing there.
I remember going back to my room, and my nurse telling me she believes in a God who answers prayers, and she would be praying. I will never forget her.
I remember Matt leaving, and how very very alone I felt.
I remember posting this status..and I will never forget it... Bekki Williams is.....devastated. We just found out Natalie has the same heart condition as our son.
I remember thinking how crazy life is..one second you are high as a kite, the next as low as low can be.
I remember Matt calling me to tell me she was settled in, her nurse was Wayne (loved him). He told me they had to test her for MRSA and we couldn't hold her without being fully gowned and gloved.
I remember him sending me pictures, and my heart breaking into a million pieces.
This is what I remember of her birthday. The highs of her being here, but mainly the crushing fear and sadness that followed.
The next week would bring open heart surgery. That surgery was almost harder than when Zachy did it. I knew the bad outcomes of TAPVR now. Yes, most TAPVR babies do well, and that's all we were told with Zachy, but by now, I knew too many who didn't do well.
I remember, and I will never forget..even if facebook takes the writing away, I will never forget that day.

Saturday, May 19, 2012

A D.A.D. for Emily

My mind has been so busy this week!
Emily went through her first stomach virus this week.
In case you don't know, stomach viruses in type 1 diabetics are very bad.  You see, in order to stay healthy (ok, alive really) a T1D needs to eat.  When you have a stomach virus, and are throwing up, it is impossible to get fuel into your body.  I spent two solid days on and off the phone with the pediatrician and endocrinologist, trying to decide if things had progressed bad enough to go to the ER for an IV with glucose fluid.  Thankfully, we were able to avoid that trip.  It sure was scary though.  She was pretty sick.  We didn't sleep much because we were awake checking her blood glucose levels.  I don't know how many times we said, 'I can't wait for her D.A.D. because then we would get some sleep' 
In case you missed my last post, I said that we had decided to start the journey of getting her a D.A.D...Diabetes Alert Dog.  D.A.Ds have been used for about 9 years and are showing they can do amazing things.  D.A.Ds are able to alert you to a high glucose level, or a low one 30-40 minutes before it shows up on a meter.  They can smell when your blood is changing.  Their noses are so sensitive, that people are reporting their D.A.D. can smell their person up to a mile away.  Kids are going outside to play, safely, because their D.A.D. is inside with mom, alerting her of any blood sugar issues.  Emily is unable to feel her lows, or her highs for that matter.  Type 1 Diabetics can have plummeting blood sugars, very quickly, which is very dangerous.  Too low of a blood sugar can result in seizures, coma, and even death.  Too high of sugars result in eye issues, hearing loss, heart problems, kidney problems, neuropathy, amputations..the list goes on and on.
Another, very real, and very scary issue is a relatively new syndrome called dead in bed syndrome.  For some reason, kids are having a harder time feeling their lows in the night, and more and more kids are dying in the night because of low levels.  Scientists are unsure why this is happening more often than it used to.  Parents didn't ever used to check their children's sugar levels at night, but now they are recommending checks at midnight and 3 am.  We know there is great value to this, as we have had to wake Emily up at midnight or 3 for juice because her levels are way too low.
As a family, we prayed and decided we wanted to give Emily the best chance at a long, healthy life.  We'd love to avoid as many hospital stays as possible.  We'd love to never see her in DKA.  We'd love to never, ever have to lose her to dead in bed syndrome.
These dogs are expensive.  But how do you put a price on the life of a child?  You don't.
So where do we stand?  We are on the waiting list, and should get Emily's D.A.D in January.  We have put $1k down and have raised a small amount more, just by spreading the word.  These dogs run $20k...so we have a long way to go, but I have faith that we will raise the money.
We are working through a non profit, which makes things easier, because every donation made is tax deductible, and they are able to take stock transfers.  We are going through Guardian Angel Service Dogs, Inc...this is the only group who is approved by the Juvenile Diabetes Research Foundation, and their track record is impeccable.  We could have gone with someone less qualified and paid a bit less, but not when my daughter's life is at risk.
This is where you come in.  Would you consider making that tax deductible donation?   Would you share our facebook page to help spread awareness?  It can be found at www.facebook.com/emilysguardianangel Most importantly, would you please pray for us and our endeavors? 
To make a donation, you can visit www.guardianangelservicedogs.org and pay by credit card.  After you make your payment, you will receive an email asking whose fund to credit, you would let them know Emily Williams.  This is a personal email that is not automatically generated, so may take some time, but it will come!  You can also pay by check, sent directly to the non profit, made out to GASD, with Emily Williams in the memo.  You can mail them to Diabetic Alert Dogs by Warren Retrievers, P.O. Box 910, Orange, VA 22960
Thank you so much for your help.
Isn't she beautiful?
Orange, VA 22960

Sunday, May 13, 2012

Big, Long, Medical update

I can't believe I haven't posted since sweet, sweet Griffin was born.
OK, yes I can.  My computer battery doesn't charge anymore, so I'm rarely on my computer, because I hate being tethered to the wall.
That and life has just been, well, crazy.
I wanted to hop on though, and just give a general, medical update.
Firstly, Griffin is great.  They echoed him when he was first born, and he had two small issues, but he was less than 24 hours old, and most babies have these issues and they resolve themselves.  He will be echoed again at six months.  He has reflux, but is being treated for that.  He's such a wonderful little chunk!  At two months, he's 15 pounds.   I love his roly poly legs!  Everyone just loves having him here and they all want to hold him...for about two minutes, then they say he's too heavy! HAHA!!
Next, since we last spoke, Natalie and Zachary saw the cardiologist.  They both got good reports and go back in a year!  This is the first time, since Zachy was paced, that he gets to go a year in between visits.  Yay!!
Natalie is still being followed by pulmonology and is doing well.  We have been slacking with her breathing treatments, but she isn't having any issues, and we suspect soon, they will clear her from their team.  She still isn't growing.  She had gained a pound, and then at her last appointment, she had lost half that pound.  She is growing taller, just not gaining any weight.  She doesn't look unhealthy, just small.
Matthew was seen by the craniofacial team in Cincinnati on Friday.  That was a total joke.  The plastic surgeon was pretty much a jerk and said anyone who said anything more could be done for Matthew's nose, was lying to us, and there was nothing else they could do.  He left the room, and I told Matthew that was an unacceptable answer, and that I would search and find a doctor willing to help.  We did this when he was baby, doctor after doctor said they couldn't help, but we finally found one who could...I won't quit looking until we find someone again.
Dillon is normally left out of these posts, but he gets to be in this one!  A few days ago, he managed to run into an empty 10 gallon aquarium with a bare foot.  He sliced his toe up and cut his foot all up.  He ended up with 9 stitches in hiss big toe, steri strips on cuts on the bottom of his foot, and glue on a cut on the top of his foot.  He is doing well, though.
I have nothing medical to say about Collin this time!  He's doing great!
Lastly, Emily.  When I last talked about her diabetes, I was really struggling with it, emotionally.  I'm past that.  I realized that I am no longer angry when someone talks to me about it. I guess it's acceptance.  Acceptance that this is forever.  The highs.  The lows.  Nothing we can do except correct them and move on. She goes for her first 3 month appointment in a week.  That should be interesting.  The exciting news about Emily, is that we have decided to pursue the journey of a diabetes alert dog (DAD) for her.  She can't feel her lows, there have been too many times when she can't stand up because she is so low, but she says she feels fine.  She may be able to feel them, but she is too young to express to us what she is feeling.  We are so incredibly excited about this, and all that it will mean for her.  She won't be restricted due to her diabetes.  I will have extra eyes.  We are so crazy busy in our life that I can't always have my eyes on her, but her DAD will, and he/she will tell me if something is going on with her sugar that I need to know about.  These dogs are very expensive, so we will be fundraising like crazy, but it will so worth it.  I'll be keeping everyone updated on our fundraising progress!
Ok, that's it!  Hopefully, next update won't all be medical!
Oh, and happy mother's day to all the moms out there!
* I wanted to add pictures, but blogger has changed, and it looks like a pain right now, and my kids are sitting here wanting me to open my mother's day present!  Pictures next time!

Friday, March 2, 2012

And Then There Were Seven

9 lb 7 oz  20 1/4 in 
February 29, 2012, 11:01 PM
Griffin: Man of strong faith
On Wednesday (leap day!!) I had a routine doctor's appointment. 
I had said on Facebook how great I thought a leap day baby would be, but that I wasn't holding my breath!
At 3, I went to the doctor.  When she checked me she asked if I was having contractions, because I was dilated to 4 cm.  I told her I was having them, but I always have them, so it wasn't surprising.  She wanted me to go on the monitors to see if I was indeed contracting regularly.  I was 38 weeks, 4 days, and while she couldn't induce me at that point, if I was in labor, she could help speed things up.
Once on the monitors, it was discovered that I was indeed contracting every 4 minutes. 
She then presented me with two options: head to the hospital and have baby, or go home and wait things out. 
Here's where things got tricky.
After Emily was diagnosed with T1D, we knew things would be different in regards to what happened with the kids when I had the baby.  No longer could we just leave them all at home under the care of the older boys.  Thankfully, a dear friend of mine is a school nurse.  School nurses deal with T1Ds everyday.  We had decided that if for some reason, I went before my mom was able to get here, Molly would watch the kids.  However, the week before, Molly told me her hubby wanted her to go to New Orleans with him while he was on business.  She said she didn't want to leave me without someone, but I assured her the chances of me going into labor were slim to none, and I didn't want her missing time with her hubby on account of me!
I texted Molly and asked if she was still in town, she was! 
We decided it was go time.  I headed to the hospital, and Matt waited at home until Molly could get there.
I arrived at the hospital at about 5:30.  I kept joking about how we were in a hurry, because I wanted a leap day baby, all the while knowing that probably wouldn't happen.
After getting me admitted, they started IVs and gave me some pit to get the contractions going a bit faster.  After a little bit, the doctor on call came in and broke my water.  No turning back now!  But I was so focused on my leap day baby, I didn't care! 
Shortly after that, they asked me if I wanted an epidural.  I'm so wishy washy when it comes to epidurals.  I've given birth both ways, and honestly, I don't know why I sometimes choose no epidural, other than it scares me to death.  After talking with the anesthesiologist, I decided I would go ahead and get one. 
It was rough.  It took her 3 times to place it in the right place.  During which time I was shaking and crying and contracting.  I was wondering what in the world I was doing, but figured I'd gone through most of it, I wasn't stopping now!  Finally, it was in and I started to feel great. I could move me legs, but couldn't feel the contractions.  I kept having to look at the monitor to see if they'd stopped.  No, they didn't.
At one point the nurse came in and said the baby did something funny, and she wanted to check me.  The chart looked funny, but I really don't know what it was.  I was 5 cm.  This was at about 10.  I told Matt we weren't going to make leap day.
After a very short time, I started to feel nauseous.  Then cold.  I had a feeling I was in transition, but didn't want to say anything since the nurse had just been in to check!  After about half an hour, I was shaking pretty good and was feeling pressure.  We called the nurse, who was shocked to find me 9 cm.  She called out to the desk to have them call my doctor.  She asked if I wanted to lay on my side to wait, or if I wanted to get my legs in stirrups so I was ready when the doc got there.  I asked how long it would take the doctor, and the nurse told me about 15 minutes.  I said that I would lay on my side, because that was too long to wait in stirrups. 
However, with the next contraction, I had lots of pressure, and told the nurse I didn't think the doctor would make it.  She had me roll over and looked, and his head was coming down.  She called for more nurses and the in house doctor.  He came in, just as the next contraction was hitting.  I had the urge to bear down, and did, ever so slightly.  His head came out, followed by the rest in short order.
We had made leap day, with 59 minutes to spare!
My doctor came strolling in, shortly after he was born. 
Griffin Tennessee came into the world weighing 9 lb 7 oz.  He is 20 1/4 inches long.  He is also the picture of health.
This hospital has been amazing about staying on top of things and making sure he is, indeed, healthy.  They did an echo-cardiogram of his heart, which found his heart to be healthy. 
Unbeknownst to me, Molly was scheduled to leave, the very next day.  Choosing to have him on Wednesday was the very best thing we could have done.  I'm not sure I would have held out for another week when my mom could be there.
I look and see how God has all the details of our lives, in His hands, and it amazes me.
Everything went perfectly.  He is perfect.  I feel great. It was time for some good in our lives, and everything has been far better than good!  The kids are all over the moon happy to have him, and so are we.  God is good.  All the time.

Tuesday, February 21, 2012

How am I doing? Not great

I've been wanting to write this entry, but have been hesitating. 
I'm afraid it will make me look weak, and well, I feel weak enough on my own, I don't really need the confirmation from others.
However, when I changed the name of my blog, I promised to keep things real.  I promised to let that weakness show through. 
So, here we go. 
This is one of the hardest things I've ever had to do.  This whole diabetes thing, I mean.
It is so so hard.
The thing is, I know that no one understands that.  Unless you've been where we are, you have no clue.  People think diabetes can be controlled with diet and exercise.  And while that's true in type 2 diabetes, it is not true in type 1.  I know I said it in my last post, but no amount of exercise...no perfect diet...nothing we do will make her not dependent on insulin.  Her body doesn't make it. 
Her body has decided that it would be fun to destroy her pancreas.  I'm having such a hard time with this.  I don't understand it.
CHD makes more sense to me than this.  I mean, the fact that a heart ever forms normally is the thing I don't understand.  It's so involved.  It makes sense that it doesn't form perfectly every single time.
But this....I don't understand this.  How does it happen that one day your body just up and decides to start attacking itself??  I don't understand!
And the fact that I don't understand is making it so hard for me to cope with this.  Maybe cope is the wrong word.  I mean, we get through, we do what we have to do.  We check blood glucose levels all through the day and night.  We inject our daughter with insulin at least 4-5 times a day.  We count carbs.  We watch her behavior, trying to determine if her glucose is going too high or too low. 
We do these things, we get through, day by day.  What I'm talking about it coping emotionally.
I am having an incredibly hard time dealing with the fact that this isn't going away.  Ever.  Sure, there's talk of finding a cure, but who knows when that will be.  Right now we know it's not going anywhere.  This will be my sweet, sweet child's reality, forever. 
How does one accept that?  How does one deal with that knowledge?  Other than just doing what we do?
But yeah, it is so hard.
Days like today, I just want to curl up in bed and never leave.  Try to wake up from this nightmare.
After dealing with a day of low sugars all day yesterday, she woke up wanting daddy.  Well, daddy wasn't here.  She had a huge meltdown, didn't want me to check her sugar, didn't want to eat, just wanted daddy.  Finally, I was able to convince her that she would feel better if she ate.  And she did. 
I go crazy trying to figure out why her BG (blood glucose) levels do what they do.  For no rhyme or reason they will shoot too high, or drop really low.  I don't understand any of it.  Honestly, I'm a pretty smart cookie, but this disease has me so confused.  I hate the feeling. I  need to understand these different things.  And yet, I have a dear friend whose daughter has type 1 as well, who has been holding my hand through this, and who keeps telling me that there really is no reason for anything this disease does.  She says the sooner I accept that, the sooner I will stop going nuts.  It's in my nature to want an explanation though! 
So yeah, I'm having a hard time dealing with this.  I know, in time, it will get better.  Right now, it sucks.  Right now, I can't even say the words, "Emily has diabetes" out loud without breaking down. 
I guess if all this makes me weak, then it is what it is.  I feel completely weak and broken right now.
I just wish my girl would get better, and I know she won't.  That's the most helpless feeling in all the world.

Sunday, February 12, 2012

Update on Emily

Since I last wrote, I am happy to report that we are home.  Emily is doing much better.  We are working on getting all her sugar levels regulated.  Who knew that this was so much trial and error??
Who knows much about Type 1 Diabetes?  I sure didn't.  I feel like I still don't.  But I'm learning quickly!
For example, did you know that when diagnosed, 70-80% of the cells that make insulin have been destroyed?  And that within a year, the rest will be destroyed?  Her pancreas will never make insulin again!  I had no idea that T1D was an autoimmune disease!  That's a huge difference between type 1 and type 2...type 2 can be somewhat controlled with diet.  Type 1, even if you are eating the healthiest foods, you still need insulin to get the sugar to the cells.  No "perfect" diet is going to give you that insulin.  You HAVE to have injected insulin. 
It's all so crazy to me! 
And where does it come from?  They don't know!  Another one of those things that no one knows the origin of that just so happened to hit my family!  Crazy, crazy, crazy!
So, we are trucking along.  Em gets at least four injections a day, sometimes more, all depending on her glucose levels.  Today was a happy day, with only four!
She has hated the injections....who would like them?  She is getting better though.  Someone told us a trick, which is helping tremendously.  We freeze quarters, she puts them where she wants her injection, it numbs the skin a bit, and the injection doesn't hurt as bad.  She then gets the quarter.  I made a huge deal out of it and called them magic quarters.  Now she thinks they are magic, and while she still says she's scared, she doesn't cry anymore.  
I can't imagine how confused she must be.  There's no way she can understand any of this.
Earlier tonight, Natalie was laying on the ground and Emily was being her doctor.  She told Natalie that she was at the doctor because she had diabetes, and that she, herself, got diabetes when she was little.  She explained to her that she needed "shots" and gave them to her.  She also told her of the magic quarters and that all she had to do was say "brrrr".
She amazes me.  She is so brave.  She tells everyone, "I had to go to the doctor because I have diabetes."  It breaks my heart to hear her say that.  To me, it's still surreal!
My family has been through so much.  And through it all, I still know that God is good. 
I know some people think I'm crazy for thinking such a thing, especially after everything we've endured.  I know, though, that He has a plan for us.  It may not be a great plan!  It may just be a plan to help our children learn to lean on Him, no matter what.  Dillon told me last night that he knows God has big plans for our family.  I'm not so sure.  I certainly don't see us as the type to be out there telling the world our story, impacting loads of people, but if we can impact our children, it is all worth it to me. 
I'm pretty sure, the plan won't be revealed to us, this side of Heaven, and I'm ok with that also.
In closing, just a cute thing that happened in the hospital. 
There were loads of doctors coming in and out, everyone talking with Emily and us. 
Someone was asking her about her brothers and sister.  They asked who her favorite brother was.  She looked at them like they had three heads, and said, "all of them, I love them all!" 
And that's the type of girl Emily is.  She loves everyone (except by the end of the hospital stay she did say she didn't really like people she didn't know..of course not, they all poked her!).  She is so silly, and such a good big sister.  If you know her, you are blessed.  I don't know how we got lucky enough to be her parents.  She's one amazing little girl.

Wednesday, February 8, 2012

Communities

Did you know that this week is Congenital Heart Defect Awareness week?  Well, it is. 
I sit here and think about how I became a part of this community.  It's a great community of people, just not one I ever thought, in a million years, I'd be part of.  And yet, here we are.  We've been here for eight years.  And we've survived eight years! 
In the middle of the week that so many CHD parents are so passionate about, we find ourselves thrust, head first, with no warning, into a different community. 
One that, right now, seems just as frightening.
Another chronic illness community.
Another community I never, in a million years, thought we would join.
A couple months ago, Emily started wetting the bed.  We weren't sure why, but finally bought her some Goodnites because she was wetting the bed nightly. 
Then, she started not making it to the toilet in time.  I thought she was just being totally distracted for whatever reason.
Over the last couple weeks, it has gotten increasingly worse.  To the point of needing to go to the bathroom about every half an hour. 
Of course, the first assumption is a UTI, but she said nothing hurt.  And while she had the urgency issue, she was peeing a LOT. 
Yesterday, we hit a new low.  She was going potty all day long. 
On Monday, I had made her an appointment with the pediatrician, but they couldn't see her until Thursday.
Last night, she was up all night, needing to go to the bathroom.  Finally, around 5 am, she fell asleep and just peed in her goodnite.  By 8 am her goodnite was completely soaked through and the bed was soaked as well.
I took her to the ER, because I knew something was very wrong.  They took us right back.  The first thing they did was test her blood sugar.  She hadn't eaten since last night, and her sugar was 298. 
After running several more tests, they told us Emily has Type 1 Diabetes.
I think I'm in shock.  I know nothing about diabetes.  Nothing.   It all seems so scary right now.  I know we will learn to live with this, but today has been rough.  So many finger sticks and blood draws and IVs and insulin shots.  By the time I left tonight (Matt is staying the night with her) she was screaming bloody murder when they gave her her shots.  She is so scared, and this must all be so confusing to her.  I want to take it all away from her, but as we know, I can't.
And so I sit here, wondering what lesson God needs us to learn.  What we are missing.  Wondering when we will get it right!
And I also am wondering what the diabetes community is like.  I guess I'll find out soon enough.
Sweet Emily with her new diabetes bear, Rufus.  He has owwies on all his injection sites.

She was soo happy to see Natalie.  All day she kept saying, "I NEED to see my sister"

Friday, January 6, 2012

Apparent Hiatus

I know I've disappeared. 
It's just that I try really hard for my blog to be uplifting and encouraging to others.  I'm going through a really difficult patch right now, and honestly, have a hard time coming up with positives to write about.
That sounds so bad.  I am so blessed, beyond measure.  How dare I say I have hard time coming up with positive posts?  *sigh*
This too shall pass. 
In the mean time, Miss Nannie had her second birthday yesterday!  It was such an emotional day for me.  I don't remember her first birthday being so emotional for me, and I can only chalk it up to being pregnant. 
In pregnant news, all is trucking along without any issue.  I'm almost 31 weeks, and it seems the next 9 weeks will last an eternity.
I am such an emotional mess lately, that I'm really looking forward to not crying at everything.  Other than that, I feel pretty good.  Starting to have sleepless nights due to be uncomfortable, but during the day, I'm good.
Matt started school again this week.  He is getting his doctorate degree.  Thankfully, because he's already a practicing audiologist, he can do the program online. 
The rest of the kids are all doing well, just growing like weeds and keeping a smile on mama's face. :-)

Friday, November 4, 2011

Bounce? On a bar??

Whew!  We got rid of cable, and now we use Hulu to watch TV.  This requires the use of my computer, which is killing my ability to blog!
However, I have to tell you about my Bounce Dryer bar!
I was sent one of these handy dandy bars to review on my blog!
For those of you who don't know, I have six children, and 1 husband.  I cloth diaper my toddler.  I have some bed wetting kids.  I have a teenager, and a 4 year old girl who change clothes all the time.
In short, I do a LOT of laundry!  My washing machine and dryer go almost constantly.
When I received my bar in the mail, I was super excited!  You see, anything to eliminate a step, is something I am all for!  One less thing to remember!
I popped it in my dryer and let the drying begin, without having to remember my dryer sheet. 
It works just as well and a Bounce dryer sheet.  Except that those dryer sheets sure have lots of handy uses, like putting them in dresser drawers, or the bottom of garbage cans, etc.  I suppose you could throw a whole bar in your dresser drawer, but that's a bit of overkill, I think.
The lack of other uses is a small price to pay to not have to think about a dryer sheet for the next 2 months (although I'm sure mine won't last that long because of the amount of laundry I do!).
I got the Bounce Free bar, but I imagine the scented bars smell just like the dryer sheets. 
This little bar is great.  No static coming out of my dryer in these dry months! Hooray!
The only drawbacks I can see are 1)as mentioned above, I like to eliminate steps, also mentioned is the fact that I cloth diaper.  You can't use fabric softener or dryer sheets of any kind when washing/drying your diapers.  It is sometimes difficult for this old mind to remember that I have to take the bar out for drying the dipes.  That whole process is a cinch though.  Just slide it and pull it out.  I just have to remember to do that!
And 2) I'm not sure what will happen should we decide not to use the dryer bar in the future.  There is a hard plastic part that seems permanently fixed to my dryer now, and I'm not sure how well it will come out.  You replace the bar by sliding it out of the permanent part and sliding a new bar in, it's just that hard plastic part I don't know about.  Is it a big deal to leave something like that in your dryer forever?  Probably not.  So maybe not a downfall after all!
All in all, I will buy these in the future! 

Tuesday, October 11, 2011

Surgery, Fall, and Dillon...what a combination!

I've been sitting here, trying to figure out what to write..but I can't come up with anything meaningful.
It seems like I'm always just updating on the health of my kids.  My mom told me the other day that she thought going to endless doctor appointments would get old.  I don't know, it's been my life for the last 15 years, it's all I know, it's just life.
But it makes me think maybe it gets old reading about it. 
The only thing I'll say right now is, Matthew's surgery went well, his pressure is, once again, down, and now we just wait again.  Do I think it will work this time?  Not really.  It hasn't in the past.  The doctor said she didn't blame me for being pessimistic about it, she said given his history, it's natural for me to be pessimistic.  I hate feeling that way.  I wish I could just say, "oh yeah, this will be it..it will be great".  I've said that in the past, only to be let down, time and again.  Once bitten, twice shy, and all that.
Fall has come to Ohio.  It is so beautiful.  I find myself wondering if the native Ohioans (is that what they're called?) realize how lucky they are.  There are many places in this country that do not look like this in the fall.  I've lived in plenty of those places.  Anyway, I just love it.  Of course, the leaves are falling faster than we can keep them raked up, and that's not too fun, but it can't all be roses, now can it?
Tomorrow, Dillon turns 13!!  How can this be?? Two teenagers in the house!  Weren't they just born?  They are growing way too fast for me.  I wish time could just slow down a wee bit.  I know I'll blink and they'll be gone, and yet, I am so thankful to have all this time with them.  I know too many people who have lost their children, so I'm not taking a minute for granted.
Well lookie there, I guess I did have something to say. 

Saturday, October 1, 2011

What a week!

For the last two weeks, Matt has been TDY.  Last week he was in Rhode Island, this week he was in San Antonio.  I so wish we could have made the San Antonio trip with him, but alas, we were all home while he was enjoying our old family and friends!  Maybe next time!
Last week was pretty uneventful, in fact, I can't really remember what we did.
Oh yes, we started school!  It went really well, for a first week.  Still working out some issues, but this happens every year.  I think we're off to a great start!
This week though, it was another story!
We had appointments all week long.  Good to get them all out of the way at once though, I always say!
Matthew is having surgery on Tuesday, so Monday he had his pre-op appointment.  All went well and he was cleared for surgery.
Tuesday, he went to the dentist and had no cavities.  I was trying to remember, and I don't think he has ever had any cavities.  Not bad for a 15 year old!
Wednesday was the exciting day!
It started early with a radio interview!  Myself and two other moms were asked to be the guests on a radio show.  Our half hour show was about mended little hearts and CHD in general.  We were all nervous, but it was so great to get our stories out there.  We only have 70 some families in our group, and with CHD affecting 1 in 100 children, we know that's just the tip of the iceberg.
Dillon is so funny, because he is convinced this will make me famous!  HAHA!! 
I know it airs in October sometime, but I don't think I can listen to it.  I'd pick apart everything I said!
From there we had to rush to the cardiologist for Zachy and Natalie's check ups.  I didn't really think Natalie would cooperate, since she hasn't ever since her RSV.  She managed to make it through the EKG, but that was it.  The doctor tried to echo her, but she wouldn't have it.  She has a questionable pulmonary vein that we need to keep an eye on, but the doc feels comfortable just retrying in six months.  At that point, if she doesn't cooperate, we'll have to do a sedated echo.  The good news, regarding her, is her rhythm looks great!  By now Zachy's was a mess, so things are looking promising as far as her not needing a pacemaker.
Zachy did great, and for the first time since being paced four years ago, has graduated to appointments once a year!  Go Zachy!!
Thursday, Natalie was supposed to follow up with pulmonology, but she and Emily woke up with high fevers.  Emily was vomiting as well.  Poor girls, they were miserable.  No pulmonology for Natalie! 
Friday was spent relaxing and trying to get well!
Matt gets home late tonight, and I am so looking forward to having him here!  I hate when he is away.  We miss him so much.  Emily woke up this morning and the first thing she said was, "today is the day we get Daddy!  YAY!!"

This coming week will be much calmer, I hope!

Monday, September 19, 2011

Did You Notice?

Did you happen to notice the little ticker over there on the right side of the screen?
The one that says, "we're pregnant again"?
Yep, it's true!  We are beyond thrilled and so looking forward to this new addition to our family.
I'm due March 11.  March is a great month to be born, wouldn't you agree?

Sunday, September 18, 2011

My Weakness

I've been debating writing this post.  Fear is what has stopped me.  Fear that somehow, if I put this out there, people will think I'm an inferior homeschooler.  However, I promised when I changed the name of this blog, that I would be honest, with hopes that someone could relate and say, "finally, someone struggling with the same thing as me." 
And so, here we go.
My weakness in homeschooling is.....lesson planning.
I hate it.  More than that, I despise it. 
Why?  It makes my life easier.  I do it, even though I hate it, so I know it makes life easier, but still..I hate it.
I hate it because I'm not good at it.
I really, really struggle with it.  Once I get going, it is really ok, and I do it every year, it is just so hard for me to start.
In reality, it should be easy.  You have 100 pages to do in 10 days, you do 10 pages a day.  Simple, right?
You'd think so, but for some reason, when it comes to lesson planning, I freeze.
It is SO hard for me to get past the frozen part.
I have read all kinds of articles on how to lesson plan and taken classes at conferences, and still, I struggle.
I'm not really sure what I'm afraid of.  Is it that if it's written down, and we don't do things on the days I plan for, I feel like a failure?  I feel like we are suddenly behind!  Behind who??  Behind what??  We homeschool for flexibility, so why am I concerned about getting "behind"?
I have planning to do.  I will start tonight.  Maybe.  Ugh!  See!!!  I'm frozen!
So that's my weakness, well one of them, what is yours?
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