Thursday, August 18, 2016

Six Doctors' Appointments in Two Weeks

After I was pregnant, but before we knew I was pregnant, we got some potentially scary news in results of blood work.

When I followed up with the neurologist (finally!) after my crazy migraine that caused me to be admitted to the hospital, I was diagnosed with hemiplegic migraines. It's basically a rare type of migraine that causes stroke like symptoms without the brain damage. Most of the time these migraines do not put you at a higher risk of a stroke. Sometimes people have them once every few years and other times once every few months. They can be caused by a wide range of things... some as simple as vitamin deficiencies... some some very complicated and complex disorders. The neurologist ordered several blood tests to see if we could get an idea of the cause of my migraines so that we could try to prevent another one from happening.

Shortly after I had the blood work, I got a call from a nurse explaining that I had a few vitamin deficiencies. The neurologist called in some prescription supplements and I thought I was good.

A few days later I got another called explaining that my ANA was very high, meaning that I have some sort of auto immune disorder. Based on some of the other results, the neurologist thought that I most likely have lupus and was referring me to see a rheumatologist.

Then a few days later I got another phone call. This time explaining that I have a MTHFR gene mutation. Apparently this mutation can cause several different issues. The neurologist referred me to a hematologist for father testing.

It was kind of scary when I found out I was pregnant shortly after we found out all of this other stuff, but didn't really have any solid answers yet. My OB was very reassuring and explained that none of these issues are something that could cause harm to the baby or me as long as we know about them. She told me that it would be considered a high risk pregnancy, but I shouldn't worry.

Thursday August 4th
I had a follow up appointment my OB in regards to my miscarriage. She said it appeared that my body was doing what it was supposed to and aside from the migraines and back pain, that all was well. Both the migraines and back pain are most likely a result of my hormone levels dropping quickly, so hopefully both will disappear soon.
She said as far as the miscarriage, she couldn't say for sure without testing, but most likely because of the timing, it was a chromosomal issue with the baby. She explained that any auto immune issue or MTHFR mutation complication normally doesn't pregnant a problem until closer to the end of the first trimester if left untreated. If we want to try for another baby, her suggestion is to wait until we have official diagnosis from the hematologist and rheumatologist so that we official know what we are dealing with and how to treat it. So.. we shall wait and see...


Monday August 8
I had a follow up today with the hand surgeon. I'm still having lots of pain in my hand that I had surgery on in April. He thinks that I have a lot of extra scar tissue (most likely caused by whatever is going on with my immune system) that is causing the pain and the decreased range of motion. I've also been having lots of numbness and he's concerned that there is a pinched nerve either in my wrist or my elbow. He put in ordered for an EMG to see what is going on with my nerves. Hopefully after that we'll have some answers and came back my hand more useful again.


Wednesday August 10
Today I saw the hematologist about the MTHFR gene mutation. Apparently research used to show that these gene mutation increased risk of blot clots and all sorts of other things. Recently though, thoughts have changed. The newest research shows that with certain conditions its important to know if you have the MTHFR gene mutation, but unless you have these conditions it's nothing to worry about according to the hematologist.


Thursday August 11
Today I had an EMG on my left arm to see if there was nerve damage causing the numbness and tingling my my hand. The good news is that all the nerves in my hand/arm are all good. The bad news is that I got zapped and poked and still don't have any answers.


Monday August 15
I had a follow up with the neurologist today. I'm still having headaches on and off and the meds they had me on to make headaches go away just made me fall asleep, but I still woke up with a headache. She gave me a different medicine to try for when I have headaches, but as of right now she doesn't want to try anything else to prevent the headaches until I see the rheumatologist to see what he has to say. She says she has a feeling that once I start treatment for whatever is going on with my immune system that my headaches will go away.
We also talked about what the hematologist said about the gene mutation. She said that because I have crazy migraines, that knowing I have the gene mutation can be helpful in treating them. For example, there are a few headache rescue medicines I've tried that make me really sick... and they make me sick because of the gene mutation, so we know we need to avoid that whole class of drugs to treat my headaches.


Thursday August 18
Today I saw the rheumatologist. First I talked to the nurse practitioner...for almost an hour. She asked lots of question and went over all of the blood work that I've had done up until this point. She then did an exam and checked out all of my joints and asked more questions.  Then she went and talked to the doctor a minute and they both came in and talked to me.
The thought is that I probably have lupus, but we aren't to the point yet when I can have an official diagnosis. There's a long list of symptoms and tests that can be positive for a lupus diagnosis, and a patient needs to have at least eleven of them before an official diagnosis can be made. I currently have quite a few, but am not at eleven yet. They ordered more blood tests that are very specific to lupus and ordered x-rays of all of my joints. Some of the blood tests take about two weeks for results to come back, so I go back in three weeks to go over all of the results and hopefully get some answers and a treatment plan.
She explained that they will treat me regardless of an official lupus diagnosis or not because my ANA is so high, but she wants to wait until she has all of the other results back and can see the big picture before decided what the best treatment would be.
After my appointment I went to the lab where I had way too many vials of blood drawn. And then I had way too many x-rays taken.

Hopefully in three weeks we will have some answers, can start treatment, and start feeling better. After my appointment today, I think lots of the issues that I've been having the past year and have a half could be by whatever autoimmune issues I am having... everything from the fatigue, soreness and stiffness, numbness in my hands and feet, rashes and itching, sleep problems, headaches and migraines, and so on...

Monday, August 15, 2016

Update on Kyle's Legs

We had a follow up appointment with the orthopedic surgeon about Kyle's femoral anterversion today.

We've been doing lots of physical therapy.. both at therapy and at home for the past couple months.

Kyle seems to be complaining less about his legs hurting unless we are doing lots of walking or he's on his feet more than normal.

The doctor said that there appears to be no change in the rotation of his femurs since our last visit, which isn't good, but it isn't bad either.

At this point, there still really isn't anything to do besides therapy.... and wait for Kyle's bones to get bigger so we can do the surgery to correct the problem. (His bones should be big enough when he's 7 or 8 years old.)

We are going to continue to do therapy at home.

The doctor suggested to try to keep a stroller handy when we go to the zoo or other places that require lots of walking so that Kyle can have breaks from walking if needed.

He suggested to continue to use motrin as needed for pain relief and also suggested to try ice and heat.

We are also going to have Kyle's vitamin D levels checked because sometimes a deficiency can cause bone pain in kids.

Saturday, August 13, 2016

Friday, August 5, 2016

6 Weeks.



6 weeks.



That's how long this little baby lived in my womb.
6 weeks.
Only a week and a half were we aware of the baby.

I puked for no reason on Monday after we got back from Chicago. I figured I was pregnant. A few days later I finally took a pregnancy test and sure enough, it was positive.



Friday I went to the doctor to have a dating ultrasound because my periods still haven't been regular since having Peyton (because I'm still nursing him). From the ultrasound, they guess was that the baby was about five and a half weeks. They gave me and estimated due date of March 14th and planned on bringing me back in 10 days to do another ultrasound to confirm the due date.

On Tuesday night, I started spotting a little. Wednesday morning I was more... so I called and talked to the nurse at my OB's office. The radiologist had read my ultrasound and noted that I had a hematoma near the implantation site, which would explain the spotting.

Thursday I was bleeding more, so I called and asked if I could come in for another ultrasound. The nurse sounded hopeful on the phone because I was still puking lots... but I kind of already knew that the baby was gone.

The ultrasound tech didn't say much... so I knew it was bad news.

The doctor said that the baby probably died on Monday based on measurements. She wanted me to get blood work to confirm my HCG levels were dropping, but was pretty sure I was miscarrying.

Saturday my labs were posted online and sure enough, my HCG levels dropped, which confirmed.

I was pretty miserable both emotionally and physically on Saturday and Sunday. I was having contractions and cramping on and off and lots of bleeding.

Sunday afternoon around 3:00 the gestational sac with the baby inside was passed.

I was hoping that once the baby was out, that I would start to feel better, but the contractions, cramping, and bleeding continued for several days.

On Thursday, we took the baby to the funeral home for cremation. I wasn't sure what I wanted to do with the baby at first, but I knew for sure that I didn't want to just flush the baby... it wasn't a dead goldfish. And I knew I didn't wan to bury the baby in a backyard because the baby wasn't a pet (and who knows how long we will live here). The baby was a human being...created in the imagine of God. I felt that the baby, even though only a few weeks developed, deserved something more. Then someone mentioned that most funeral homes will do cremation free of charge for miscarried and stillborn babies and that sounded like a good option for me. It sounds weird, but having Michael's ashes around bring me comfort, so hopefully having the baby's ashes around will also bring me comfort.

The following Thursday, I was able to pick up the baby's ashes from the funeral home.

This morning we talked to Emily, Kyle, Colby, and Peyton about the baby. We told them that God had put another baby in mommy's belly, but the baby died before it had much of a chance to grow. We explained that once the baby came out, we got a small bag of ashes like we have Bumpa's box.
As a family we went to Build A Bear and made a bear for the baby. All four kids picked out little hearts and put them inside. We also put the baby's ashes inside. Now we have a very special bear to help us remember the baby.


We've had lots of conversations about the baby this morning. The kids are all pretty sure the baby was a boy (I was thinking the baby was a boy too!). Kyle and Emily have talked about the baby being in Heaven with Bumpa. Emily has talked about the other baby we lost too (Kyle and Emily's triplet). Colby is kind of confused as to why the baby is now in the bear's belly instead of mommy's, but eventually he'll understand.



While we never got to actually meet our baby, the baby is still apart of our family. We still lost another child. God created life inside of me, and while that life only lasted for a short while, it was still a life. Still a child. Still loved. We are a family of eight. Four kids here with us to raise and watch grow up and two waiting in Heaven for us.
While death is never okay and was never supposed to be apart of the plan, God is still in control and sees the big picture. God intentionally created this baby even though He knew the plan for the baby. God has a purpose for the baby's short life... and someday we may know what that purpose was or we may never know, but we do have hope in a good God who is sovereign over all things. We have hope in a God who always works for the good of those who love Him, even when it doesn't seem that way to us. We have hope...
For from Him and through Him and to Him are all things. To Him be the glory forever! Amen! Romans 11:36