Questions? (Part 1)

So tomorrow we go to the perinatalogist to discuss the results of the autopsy. I am super nervous to put it mildly. The report was sent to the doctor a couple of weeks ago for her to look over and then discuss with us, but I feel like my nerves are because she will most likely give us "standard" answers and not the depth in which we desire.

If you recall from my previous post the autopsy said: "cardiomegaly (enlarged heart) resulting in hydrops fetalis (massive fluid overload usually resulting in death) caused by maternal diabetes." After further research we question the results of this for several reasons. First off, my diabetes was in better control than non-diabetics at the beginning of pregnancy and in better control than any of the other pregnancies. Second, I had a horrible cough/cold for the last month of pregnancy (still really hasn't gone away) and viruses are the #1 cause of hydrops. Third, the baby had a extensive fetal echo at 24 weeks which showed and I quote the pediatric cardiologist "a very strong heart which is a testament to good diabetic control." Fourth, I had weekly biophysicals which showed nothing even up to the day she might of died. For those of you who don't know, a biophysical is like a high level ultrasound and a non-stress test in one. This one gets me. You think something would have showed up. These conditions should not just happen overnight. And fifth I was showing obvious signs of something amiss. The baby weighed over nine pounds and I was HUGE at 36weeks. Here is a picture taken around the time of that ultrasound:

So based on these facts we have a list of written questions and need thoughtful answers to each for many reasons.

#1. We need answers. Simple as that. Our child died and we want to know why.

#2.  We want to know whether her death may or may not have been preventable.  This is not to place blame on anyone. We just need to know so another child doesn't die needlessly.

#3. We need to know if having more biological children is a possibility. This really gets me. It will direct my path of grief.  If indeed the death was caused by my diabetes then it makes for a real soul searching on my part to not go down a path of guilt. If it was just a biased assumption than we need to look for other causes and decide whether or not we could handle the possibility of another tragedy. Even though the conclusions of the autopsy results were based on incomplete facts, we know we may never truly the ultimate cause.

We have about 15 or so more in depth questions with which I will not bore you with.

We are human, so we want answers. Heck, if I google "hydrops fetalis" one more time, I think my browser might explode. But ultimately any conclusion I know I should not fear because God is in control. But I would be lying if I didn't say I need more peace with all of this. So please pray for wisdom for the doctor tomorrow am but more importantly a sense of peace for us no matter what the outcome so that God's may ultimately be glorified through all of this.

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.