As most of you know, we have been on a trial period home from the hospital since Monday evening. The hope was I would be able to continue the same regimen without IV insulin at home and stay home.
Well, this simply has not been the case.
The good news is my blood sugars are short of perfect for the entire day and night...until 6am.
What happens at 6am, you ask? Am I getting up and eating a snickers?
Well in keeping my blood sugars between 55-110 all the time, the body gets nervous when you fall asleep so you don't pass out and die. Good right? Well yes if you're not pregnant. See there is this thing called the dawn affect. Basically, your liver has stored forms of sugar and fat called glucagen. This is only released when your body is in crisis like hypoglycemia.
Well since I am having what my body percieves as hypoglycemia, even though the range is okay during pregnancy, at or around 3am my body releases lots of glucagen or an "internal snickers bar" to compensate and keep me safe. So I get all of the calories and fat and none of the fun. What it is really doing is rebounding my blood sugar back up to a way too high number. This fasting blood sugar when higher than 100 has been proven to cause problems with diabetic babies. Mine is often in the 200s, even though just 3 hours previous it was 60-80s.
So just give me more insulin at that time right? Traditionally, this has worked. But for some reason my body bottoms out on any insulin I get overnight and refuses to go down after 5-6am. This is what put me in the hospital last time, because I need IV insulin quickly to get it down in a safe range.
We decided over the course of the hospital stay we turn off the pump. It was contradictory to everything I know about diabetes, but I was having absorption issues and it was leaking a lot because of the demand I was putting on it, requiring so much insulin. I am now on old school injections 6 times a day and wearing a sensor (which is horrible!) to quickly detect highs or lows. The sensor reads sugars every 2-5minutes and alarms when unstable. The problem is they are very unreliable in pregnancy. However, it has helped us look at trends a bit and we have come to the conclusion, well..that is just HARD! Really HARD. The docs are stumped. I am stumped. And we are running out of options.
We go today to talk to the doctor in the office and decide the next game plan. It may mean turning my pump back on overnight and using it in conjuction with the shots, but we tried that before and it didn't work any better. Also, that plan means another hospital stay to regulate the numbers.
There is also some things we can do to normally "trick" the body, like give a bigger snack at night to prevent the lows from happening in the first place or time the insulin differently. We have tried IT ALL!
As you can imagine we are growing weary and nervous. I am 27 weeks tomorrow and we just need this baby be okay. I am not sure we handle the loss of another child. Keep in mind delivering a diabetic baby, especially a boy, early causes lots of breathing issues. But we feel very confident in our NICU and docs to perform the correct treatment plan if that needed to happen. We don't forsee an early delivery, but when exactly to deliver will be tricky. I am trying every moment to do my part. In fact, I have barely slept in days between the 25-30 finger sticks and injections and alarms and treatments of lows and highs. It is actually a little nicer being in the hospital on the that front because I can at least sleep a little easier through the nights and know someone will come recheck my blood sugar so I don't have to stay awake the whole time.
I am sorry for this detailed and probably over medical post, but I am hearing from lots of people tips and suggestions on how to control my diabetes. I love all care people are giving us, but the fact is ultimately I am doing my best with the teams of incredibly educated docs and it still isn't enough. That is the sad fact. Diabetes is a killer. We know it killed our last child, despite the best control I had with any pregnancy. We are trying to give our son the best chance of survival and also keep me from having the least impacts on my body we can. It is a delicate balance with often no rhythm or reason.
We appreciate your support and kind words more than we can say. Please don't interpret this message as negative. We still have tons of hope for this child, but this is our reality and want you all to be aware of it.
Thursday, January 29, 2015
Tuesday, January 13, 2015
Expect the Unexpected
If there is one thing Dustin and I have learned through the last few years is that the only thing you can expect to happen is exactly what you didn't expect to happen.
Today was an extensive doctor appointment and fetal echo. My diabetes is causing little reason for concern right now...unexpected and exciting.
After a look at every crevice and cranny of Mr. Man's ticker, we got to see his face. OH MAN! They should warn you when they turn on the 3D screens that is like looking at your baby for the first time.
I can't even say he is cute, because he is GORGEOUS!
After the almost 90 minute sono was complete the sonographer stated she need to review some things and would be back in ten minutes. What seems like over an 1/2 hour later, she returned with very unexpected news.
In one of the chambers of baby bear's heart is a spot called Echogenic intracardiac foci (EIF) or basically a calcium deposit on the the heart. This is a soft marker for Down's Syndrome. It does NOT mean our child has Down's Syndrome. As most people know Down's Syndrome has many soft (unclear) and some hard (clear) markers for diagnosis. We opted to do a DNA blood test that would confirm with 90% accuracy if he does indeed have Down's. While, we would be crazy to not be anxious about the results, we feel at peace with whatever results. Dustin and I researched extensively adopting a baby with Down's and know how sick they can be physically and are emotional to think about any trials could face him, which leads us to our second point of concern.
One of his valves (tricuspid) does not have blood flowing through like other's babies flow. We have no clue if this is an issue or will ever be an issue. It could mean absolutely nothing. But of the two things we just learned today it concerns me the most.
A child with an designer chromosome who doesn't know how to hate?!??! Sure, I will take that.
A child with an designer chromosome who doesn't know how to hate, but has to endure pain and suffering, regardless? This mommy's heart can't even bear to think of that.
So for now we anxiously wait 10 days for the results to come back, but Dustin and I and are surprisingly at peace with any outcome...at least for now. Instead we are focusing on our GORGEOUS little man.
Today was an extensive doctor appointment and fetal echo. My diabetes is causing little reason for concern right now...unexpected and exciting.
After a look at every crevice and cranny of Mr. Man's ticker, we got to see his face. OH MAN! They should warn you when they turn on the 3D screens that is like looking at your baby for the first time.
I can't even say he is cute, because he is GORGEOUS!
After the almost 90 minute sono was complete the sonographer stated she need to review some things and would be back in ten minutes. What seems like over an 1/2 hour later, she returned with very unexpected news.
In one of the chambers of baby bear's heart is a spot called Echogenic intracardiac foci (EIF) or basically a calcium deposit on the the heart. This is a soft marker for Down's Syndrome. It does NOT mean our child has Down's Syndrome. As most people know Down's Syndrome has many soft (unclear) and some hard (clear) markers for diagnosis. We opted to do a DNA blood test that would confirm with 90% accuracy if he does indeed have Down's. While, we would be crazy to not be anxious about the results, we feel at peace with whatever results. Dustin and I researched extensively adopting a baby with Down's and know how sick they can be physically and are emotional to think about any trials could face him, which leads us to our second point of concern.
One of his valves (tricuspid) does not have blood flowing through like other's babies flow. We have no clue if this is an issue or will ever be an issue. It could mean absolutely nothing. But of the two things we just learned today it concerns me the most.
A child with an designer chromosome who doesn't know how to hate?!??! Sure, I will take that.
A child with an designer chromosome who doesn't know how to hate, but has to endure pain and suffering, regardless? This mommy's heart can't even bear to think of that.
So for now we anxiously wait 10 days for the results to come back, but Dustin and I and are surprisingly at peace with any outcome...at least for now. Instead we are focusing on our GORGEOUS little man.
How could we not with this face? |
Monday, January 12, 2015
Yesterday All My Troubles Seemed So Far Away
"Yesterday all my troubles seemed so far away, no it looks as if their here to stay.
Oh, I believe in yesterday." I used to play this song over and over on repeat on my grandparents keyboard when I was younger.
I thought it was the most depressing song with a horribly catchy tune.
I can't get the stupid song out of my head today. And it seems fitting.
Everyday seems to gain new challenges and trials.
It weighs so heavily on me at times I can't breathe.
I fill I am on the verge of a panic attack most hours and alleviated it by the distractions of the kids.
Something they don't tell you in Grief Class 101:
Those who you love you most won't understand.
Those who should understand don't.
It's a horrible reality. Probably one of the worst. To sit in the same room with someone when your child dies and know they will think differently than you come one day.
But it's the reality of being a mom for anyone. You can't expect others to feel the same way about your kids even if they spend more time with your kids than you do. They are yours; ingrained
Oh, I believe in yesterday." I used to play this song over and over on repeat on my grandparents keyboard when I was younger.
I thought it was the most depressing song with a horribly catchy tune.
I can't get the stupid song out of my head today. And it seems fitting.
Everyday seems to gain new challenges and trials.
It weighs so heavily on me at times I can't breathe.
I fill I am on the verge of a panic attack most hours and alleviated it by the distractions of the kids.
Something they don't tell you in Grief Class 101:
Those who you love you most won't understand.
Those who should understand don't.
It's a horrible reality. Probably one of the worst. To sit in the same room with someone when your child dies and know they will think differently than you come one day.
But it's the reality of being a mom for anyone. You can't expect others to feel the same way about your kids even if they spend more time with your kids than you do. They are yours; ingrained
Post Funeral
Two years ago today we buried our little girl. I could go on and on about the sadness of the day, but what's the use?
It happened.
It's two years later and life has gone on.
I am a different person. A piece of me broken and I was always walk around with this silent limp.
Today, I am pregnant.
I'm gonna let you in on a little secret. I don't care. I'm not particularly excited about it. I am not particularly sad about it. It just is. Maybe we find out the sex Tuesday some magic will spark within me and I will be excited.
This pregnancy's excited has been replaced with drama and un-needed stress, directly from the places I hoped to find solace.
It is what is. There is no magic potion or positive thought that could change that fact. I am the common denominator within all this. I have for attracted this to me and I must in some way muddle my way to some breathable light.
I let you know when I find out how to do just that. Until then I am in gear survival mode.
Tuesday, January 6, 2015
Clarifications
I have come to understand for many, including myself ignorance is bliss. But it is also something very much else hurtful. So I feel clarifications need to be made.
Clarification #1:
I have said this so many times but I guess it bears repeating Dustin and I did NOT pursue adoption because of infertility. Of course there are millions with inferitility that do pursue it for that reason. But being a part of adoption groups, one the most hurtful things a mommy can hear who can't carry a child to term is, "just stop trying and it will happen."
So you can imagine how many comments I get DAILY from people saying, "isn't that how it always happens, you were about to adopt and BAM pregnant. See you just needed to relax." While yes this is true, it is NOT because we were about to adopt we became became pregnant. We felt it was very unsafe for me to concieve more children and were trying to prevent pregnancy. Seeing the cause of death as your diabetes on your child's autopsy will change your conception patterns quickly. I hate that in some way I continuing the stupid stigma that if infertile couples just "relax" a baby will come. I also hate that I am continuing the stigma that pregnancy is the goal and adoption is the alternative. We WANTED to adopt whether we had biological children or not and still see adopted children in our future.
The fact is I am VERY fertile and this little guy is destined to be born into our family as the gift he is from God. That may mean he goes straight to heaven like three of his siblings but regardless God let me be his mommy, Dustin be his daddy, and Henry, Amelie and Claudie be his brother and sisters. So for that we are extremely grateful.
Clarification #2:
As most of you might know I spent the better part of the holiday break in the hospital on two seperate occasions. Most of you probably assume because I have had a loss that the baby is at risk right now for dying. But the fact is this baby is as the same amount of risk of dying at this point in the pregnancy than any baby. We are exposed to the same risk factors as a healthy baby, no more. The risk factors for this baby lie with MY health. And frankly the risk factors at this point are for me. I don't mean to diminish my child's well being over my own, but I felt some clarification needed to be made as most assume I need to spend every waking second in the hospital to have a healthy baby. This is not the case, at least at this point. And in fact, the opposite would be better for baby and my well-being.
To help you understand, Type 1 diabetes affects pregnancy at pretty much every turn. Heard of gestational diabetes? Yep, the placenta likes to make you so resistant to insulin even the healthiest of mommies can get diabetes in pregnancy. Well, I have diabetes for 27 years this week. I have had five pregnancies and this will be my sixth baby. Each baby causes the body to become more resistant to the insulin you are giving yourself via injection or in my case through an insulin pump. This has kicked me into a type 2 diabetes in addition to a type 1, so I have to take pills to make my body recgonize the insulin I am giving myself through the pump. Well it is easy for many to say (especially doctors) that it is a simple as what you eat, it just isn't.
People often ask me what effects my blood sugar. The answer: EVERYTHING. One of the reason I switched to another high risk OB group is because of how they treat diabetics during pregnancy. It would never be conducive to every day life, but for these nine months they expect me to eat the same thing at the same time every day. This produces little room for variability, because we know life especially with jobs and small child has enough variablility. Ok, so put me in the hospital right? That would provide the same thing everyday. Well yes this works to some degree, but perhaps the BIGGEST affect on blood sugars is stress and for anyone who has spent anytime in the hospital, you know, you will be stressed.
There will most likely come a time wherein I just can't do it at home and will need to be taken in. But the baby is at no real risk at this point. I am. Why you ask? Well, because my blood sugars have to be extremely close to critically low levels to achieve the goals of a healthy baby that won't be affected by my sugars. So that is why I have spent so much time for close monitoring in the a hospital setting. We have set up safety parameters to make sure I don't pass out at home, and I wasn't allowed to leave until the risk was low enough. Acheiving this tight control should prevent the amount of glucose the baby is exposed to. Both Henry and Amelie needed IV glucose shortly after birth because they were exposed to so much of my glucose it was hard them to compensate after delivery. Claudie's heart enlarged because those glucose levels essentially put her into congestive heart failure and that was despite the best control I had in all the pregnancies.
Clarification #3:
Why in the heck are you pregnant again if I am so high risk. Good question. I ask myself it way too much and have horrible guilt. But the fact is the guilt will contribute to stress which, as you now know, will only make this baby more at risk. And as my diabetes doctor told me, "this baby is a gift and will be treated as such. End of story."
I would also like to say a HUGE thank you for those who reach out to me via FB, texts, and visits. Those who offer to help with kids or other tangible ways. I am VERY aware of the taxing behavior I have placed on each and every person in my life through this pregnancy and feel so blessed beyond measure to have you all in our lives. We simply could NOT do it without you.
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