Answers (Part 2)

First off, I want to say a very heartfelt thank you for all the prayers regarding yesterday's appointment. They of course were answered. The perinatologist answered ALL of our questions; most before we even got the chance to ask them. The answers were not all exactly want we wanted however.

She immediately started the appointment by saying, "this is why your daughter died." While this may sound strange we desperately wanted and needed that information to go forward so a gigantic weight was lifted immediately. I feel so sad for some many who will not get an answer.

The following information was not as easy to hear. Basically, three things can happen to babies of diabetic mothers with high blood sugars. One they can pee off that blood sugar to adapt and cause what is called polyhydramnios (high amniotic fluid). This is dangerous and can cause preterm labor if it gets out of control. I had it very badly with Henry and some with Amelie. A lot of people have questioned why we have had two healthy pregnancies and then this. The fact is I have yet to have a healthy pregnancy.

The second is an increase in blood sugar will cause a fluid accumulation in the belly causing ascites and a fatty liver. This is when we see a super large belly on a diabetic baby. Big babies run in this family, so how do you know if that is caused by the diabetes?  Basically, a big baby that is just big cuz well mommy has big babies is big everywhere (head, legs, stomach). A diabetic big baby will often have an averaged sized head and a very large belly. In other words, the proportions are off in a baby with maternal diabetes.

The third thing that can happen is that fluid can form around the heart and continue to put pressure on the heart until the heart enlarges and goes into failure, very similar to what happens to congestive heart failure patients. This is what Claudette had. The body will compensate by putting massive fluid in all two or more compartments (hydrops fetalis), hence her ascites (fluid in the belly) and pleural effusions (fluid in the lungs). This process probably happened within minutes to hours. That is why even though I had an ultrasound with a day or so of her death no one detected it. The heart  however was getting enlarged most likely around 30-36 weeks of gestation and could have been detected by a perinatologist but not usually in a biophysical profile (BPP) like I was having done.  Here is the really hard part: if interventions were immediately performed when seen, the baby would most likely have lived since the cardiomegaly would have resolved quickly after delivery. This is hard information. Claudette's death could have been prevented.

At this point I was very upset. Basically, my daughter's enlarged heart was caused by my diabetes and not only that my uncontrolled diabetes. So I asked how with this information can we possibly in good conscience conceived another child. I did not expect her answer, "you absolutely can but many things have to happen first." First, I have to see if I can get my blood sugars in control. While I realize this seems like an easy task to many, it has caused me 22 years of struggles. I have a horrible time with control, but Dustin and I are committed fully to giving it our best shot. (And NO it is not as simple as eating less carbs.)  In a way I see this as a real blessing because there is nothing that will drive a woman into a healthy lifestyle more than the goal of having a child. Frankly, I needed this push whether or not we have more children. So Dustin and I are very committed to making this happen.

We also have to change our level of screening in the next pregnancy. I will not only have twice a week BPP but I also would have CSTs twice a week wherein they would stimulate contractions to make sure the placenta is staying healthy. In other words, I would be watched VERY closely more than I already have been.

The last thing that would have to happen is the hardest: I would have to be okay with loosing another child. No of course, no one is "okay" with loosing a child, but not go into the loony bin okay. This one is a hard one not just for me but for all of my family and friends who have suffered this loss with me. In some ways I think it would actually be the least hard on me because my heart can't be broken again in the way it already was been. The chances of loosing a baby like this again will be very little because of the interventions, but having another miscarriage or the like is a real possibility. So
as Dustin and I continue on this long journey to improved health (mentally and physically), please pray that we may glorify God in this process and seek His wisdom and not our selfish desires.

Oh and HAPPY TWO MONTHS today Claudette Elyse. They say babies smile "for real" at two months old so I hope you are smiling for real at how mommy is handling life without you.

Harder Than I Thought

I knew the this was going to be difficult. I knew it was going to be take my breathe away with the pain sometimes. I knew it was going to be impossible to feel like I could go on at times. I knew the days would grow dark and sad. With all that it is still harder. I am sitting here in a messy house surrounded by Kleenex and cranky kids and I all I can do is sob. I don't know what to do.
Have you been there? So sad and overwhelmed you don't know the next step to take. That is where I am at.

Friday is what started the downward spin. I woke up to someone being offended by my blog. Hard because when I write it I am in another world of sorts. I get it all out and then often read it back through with the rest of you. It often feels like I have just had a great workout after I am done, exhausted but feeling better. I don't write to hurt others. The exact opposite really. I feel like if I am having these thoughts others must too.  I hesitated to even continue with the blog, but Dustin convinced me to continue.

Then mid-morning I had my six week post op check up. This was my first appointment without Dustin since it happened. The receptionist forgot to let my nurse know that  I was there immediately, so I had to wait a bit with a bunch of ladies about to pop and a couple of cute newborns. As much as it hurts, I do love seeing babies so  I was fine. Afterward, I picked up my hungry kids and went home. Let's just say they were less than perfect. By 3:30 I needed a margarita! Bad!

As soon as I sat down the phone rang. Dr. Mitchell. Maybe, I left something at the office? Nope. It was him calling me the autopsy results which ironically had been dropped on his desk during our appointment earlier that day. He offered us to come in. I said no and I wanted to hear them then. I grabbed the pen and pad we normally use for the grocery list. The results hit me like a ton of bricks. I wasn't expecting us to have any answers really especially that early. I knew they could be back as early as 4 weeks but when we didn't have them back at the 6 week appointment I thought it would be months before we would get the results. I heard the doctor state lots of big words. Some words I understood from my medical experience, some I did not. The words I understood: macrosomia (a big baby), ascites (fluid in the abdomen), cardiomegaly (enlarged heart). Then a word I didn't: hydrops fetalis. It basically means severe edema in babies that is often fatal. Liver had been dead for 4-7 days. Other organs showed a time of death of a week previous. So she died most likely on Thanksgiving or very close to. And then he read the a part of the summary that devastated me more than anything I have ever heard in my life...most likely caused from maternal diabetes.

I continued to talk but I collapsed mentally right there. I could handle if I went blind or lost a limb because of this stupid disease but NO not the death of my child!! It is more than I can handle. I have had diabetes for 22 years and really not a single complication and this has to be the fate of this horrible disease?!

The guilt consumes me. I haven't slept more than an hour since I found out. Logically, I understand that I didn't do anything intentionally to hurt her, but it still doesn't change that fact that if I didn't have diabetes she would most likely be alive. And YES I know God was ultimately in control and the guilt is the devil's way of seeping in. And NO I don't want to hear, maybe she would be worse off if she lived or that my life was spared for hers. I will find a way to deal with all this I am sure someday but for now it is just harder than I thought.

We spend Saturday afternoon placing flowers on Claudette Elyse's grave. It is all so surreal.