I’m going to try to give you guys the short version of Nella’s medical update because I know…
- Many of you have been praying and
- Many of you have asked how you can specifically pray
We are grateful that you are praying on our behalf. Thank you, it truly does mean a lot to us.
Nella had a few signs that triggered our pediatrician to double check her estrogen levels. It was her first appointment here in the states and honestly, no one was worried about much. We were running the tests to mostly “be safe” and make sure we covered all our bases.
It’s always harder with adoption because you don’t have every detail of the medical background and even the details you do have… could be based on very different standards than the US standards.
So, we had some blood work and x-rays done. No big deal.
The specifically tested her estrogen and it came back “normal”.
It was technically right above normal, but our doctor was thinking that may just be “her” normal. Either way, we felt good about it and no one was concerned.
Fast forward 2 months later when we went in for the follow up. Our doctor went ahead and had her tested again, just to make sure nothing was changing. I think we all just assumed it would come back the normal again and go about our merry way.
But, it surprised us a little and did not come back normal.
Her estrogen levels came back elevated. It had more than doubled, to be exact.
Our pediatrician is amazing and decided to send us to see a specialist in St. Louis (which is about 2 hours from where we live). She’s always more comfortable when someone who specializes in that area of medicine can give an opinion just so we can be sure we know what we are dealing with.
I’m not gonna lie, I was a little shocked when I initially heard her say she wanted to send us to see a specialist. Shocked in the sense that, so far, we haven’t had to deal with any kind of medical issues with our children yet.
Sloane has had some behavior things come up, but nothing that ever made us “scared” for his health.
This was a first for us.
I’m pretty sure I cried at least 16 times that day thinking that something could possibly be wrong with our baby girl. Even if it was minor or nothing… the word “specialist” sent me into fear mode.
Of course, I asked our pediatrician about 9 gazillion questions (God love her, she’s amazing and talked to me forever).
I asked her…
What is best case scenario? What is worst case scenario?
Best case scenario is that it’s nothing. That her estrogen levels would be increased or elevated but there would be no explanation or underlying medical concern. It happens this way (believe it or not) and can be common for it to be unexplained.
This info made me feel good.
But then she said worst case scenario…. and this is when the tears started flowing.
Worst case scenario is that the extra estrogen in her body is being caused by a tumor producing estrogen.
I only heard that.
And I don’t care if it’s the smallest percentage chance and the least likely explanation… I became terrified.
And then I went home and did what any sane concerned mother would do — I got on WebMD.
I know, I know. I told myself not to do it either, but I wanted to learn more about what could be going on in her little body.
Thankfully, I didn’t have to do my own research for too long because we got into the endocrinologist fairly quickly (thank the Lord).
We met with the endocrinologist in St. Louis a few weeks ago, did additional blood work and had an ultrasound done of her ovaries to make sure that she did not have any cysts or tumors on her ovaries.
We finally have the results from those tests and some of her hormone levels were still elevated. Luckily, nothing was detected on her ovaries (that they could tell). Again, it’s hard to tell on a 2 year old because her ovaries are so small. But it did show that they were being stimulated. Meaning that the extra estrogen was causing that.
Sooooo, after all of that information, if you are wondering what could be wrong… so were we. And that’s the part we’ve been talking through with the team of endocrinologists in St. Louis and praying through.
The short version is that something could be causing her to go into early puberty which they do not want to happen because in puberty, your bones begin to fuse together and your growth becomes stunted.
She’s not IN puberty yet (so don’t think I mean she’s getting her period at 2), but she does have breast buds that are larger than normal for her age. And she does have higher levels of estrogen and LSH levels than what is considered normal.
- It’s nothing
- The elevated levels of hormones are being caused by the pituitary gland (which is in your brain). This could be a tumor in the pituitary gland that is pressing on something and causing the gland to release extra hormones. Or
- It could be a tumor somewhere else in her body causing the extra estrogen.
If it’s nothing, then we would see her breast buds go down and her hormone levels decrease over the next few months. However, she has had the breast buds since we got her (and I recently learned that she has had them since she entered the orphanage at 7 months). So I don’t forsee them going down anytime soon.
If it’s the pituitary gland, then there’s a good chance that the tumor would be benign. I can’t remember exact numbers, but only a small percentage of pituitary tumors are cancerous. If it was a benign pituitary tumor then she could start treatment that would stop the hormones from causing her to enter into early puberty. This can be controlled until she is age appropriate and ready to go into puberty where then they would end treatment. And all would be fine.
If it’s a tumor somewhere else in her body… we would have to do an MRI to find it and then possibly have it removed.
After discussing her case with the endocrinologists, we feel like it’s best to have additional testing done to see if we can find the source of the problem. Waiting 3 months and “seeing” if her breast buds and hormone levels go down was an option given to us, but again, knowing that we don’t really know when she got the breast buds exactly or what her estrogen levels ever were before she became our daughter, it concerns me to wait any additional time than we have to. And honestly, we would most likely be delaying the inevitable.
We will go back to St. Louis on February 14 to have all the tests done to check her pituitary gland. It’s not unsafe to have the test done, but it may be uncomfortable for her. We still believe in our hearts this is the best option so that if there is something going on? We can find it early and get it taken care of.
Sounds like a romantic day in Children’s Hospital. 😉 But honestly, we’d rather be there with her getting this all figured out than anywhere else.
Pray that the tests show nothing abnormal in the pituitary gland.
Pray that her hormone levels go back to normal.
Pray that she is healed.
Pray that there are no tumors anywhere else in her body.
Pray that she will feel loved and safe with us when she is going through the 2.5 hour test.
Pray that God will take away the worry Jeff and I have.
Pray that our boys are well taken care of back home while we spend time away doing the testing.
Pray that the doctors will know what the next step is.
Pray that God leads us to whatever is causing her levels to be high.
We appreciate every single prayer. We know that God is all over Nella’s story and life and this will be no different.
And we know that we were meant to be her family from the very beginning. God has placed her with us because He knows we can get this taken care of.
Sorry, that wasn’t the short version like I promised. I guess there was no way to make that story short. Plus, I like details. 😉
Again, thank you for your concern and prayers.