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.
Tumor.
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.
So, either….
- 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.
Specific prayers:
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.
I’m praying that God hears all our prayers for Nella. The unknown is very scary. May God calm your fears and provide peace during all the testing and waiting.
Thank you for sharing with us. Praying for your family and especially your sweet Nella.
Praying Mandy. And I truly feel this again is God knowing exactly where Nella needed to be. Hang in there momma!
Praying.
Praying with you for complete healing!
Praying for sweet baby girl Nella and all of you!! ?
BIG prayers for Sweet Nella and your whole family! God is working to restore her to perfect health!
Mandy- I am going to send you an article in PM on Facebook.
I am so sorry to hear about Nella. I will be praying for good news for her. It is a different situation, but I had a pituitary tumor 4 years ago, and everything is fine now! Trust in the endocrinologists, they really know their stuff. God will see you through this. He always does.
Praying for your precious baby girl. I love seeing your pictures and reading your stories. I don’t know you but it is very obvious God has blessed your family and your new addition.
Praying with all my heart. We have walked this exact road back in 1994. I know lots of medical progress has been made since then. Our Ashlee had all the symptoms you listed at a very young age too. Drs after Drs, tests after tests, traveling to specialists, Children’s Hospital. I can share lots of experiences and symptoms and diagnosis(s), but I don’t want to take up your comment space. Long story short, we still have our girl (she is now 27) and she is a 100 pound 4’11” petite beautiful brown haired, brown eyed girl. She’s the light and joy to our world. If you would like to talk with me about our experience, pm on FB. You can see pics of Ashlee on my FB page too. I am joining you in prayer for your beautiful baby girl. And family.
???? Myla Perry Walworth
Praying specifically for all those things!! Thanks so much for the update!!
A friend of mine connected me to your blog – I will definitely be praying that all scans are clear. We have just surpassed the year mark of our 2 year old daughter having her tumor (hormone producing) removed. Hers was an adrenal cortex carcinoma. Praying that you get answers and get them very soon without too many tests.
Many many many prayers your way! Only positive vibes.
Had a friend who’s daughter had very similar symptoms at a similiar age. After many tests Doctors thought it was caused by hormones in her food, and all went back to normal (decreased breast buds) after the family switched to organic milk and meats. You may already do this but just a small suggestion.
I have a pituitary tumor. It is 1.4 Cm in diameter. I may have developed due to the influx of hormones while pregnant with our daughter. It does make my hormones out of wack and I will start meds this month now that I’m done breastfeeding. They say it is common, but it’s still worrisome. If they take it out, they will go through the nose. I pray it is nothing and for immediate answers for your family. Nella 🙂 is such a seeetheart.
I don’t even know how I got to your Insta and to your blog – guess God wants my prayer for your special nugget. I am he mother of four little girls one just the age of Nella. Praying hard for you and yours! God is good all the time and His provisions are perfect for your need! With love from Chicago!
Okay first- I will definitely be praying like a giant warrior for all things listed. Next, I love so much that you capitalize “He” when speaking about God. (Like for real- this is one of my big brow-butts when I see people speak about Him without doing it- and yes, I know I’m anal and meticulous) Lastly, He put you on the path to the amazing beautiful sweet girl and if it comes down to #2 or #3 – I am only more certain that He is so full of wonder because Nella would most likely not be getting the opportunity to have this extra examination done if not for you and Jeff becoming her forever Mommy and Daddy. So- in ALL things you can be assured that it will be well within your soul and with many prayers and love Nella will be at the top of that sum. Xoxo
Thank you for inviting us into your precious family’s lives to pray for sweet little Nella. Praying for grace and peace and strength. Also praying for complete healing in Jesus name !
Praying for your sweet girl! ??
Praying for sweet Nella and your family. May Our Lord heal her of any affliction that she may have.
Thank you for the update and for being so open, it is hard to put into words your heart’s biggest fears. ((Hugs)) and prayers for all of your worries. We will be thinking of you guys. She is so blessed to have such a loving family!
Praying!
Thank you for sharing your very personal story. Each day as I gaze at your family pictures you post on Instagram I think of little Nella. Gods richest blessing and prayers on your beautiful family.
No words except, I’m praying for all of you. God will stand in front of you, behind you, beside you, and carry when needed.
Oh Mandy, I am praying so hard for your family and sweet nella! My son was born orb 4 holes in his heart, and extra artery and his heart was working all wrong. After weeks of testing they found a medication that got him to 3 years of age before doing open heart surgery. Where they found a tumor and removed it and fixed his heart. He still has a heart condition to this day and probably always will. I get the fear, scared, tired, wanting to go through this so your kid doesn’t, the tears, the heartache but lady, trust God! Trust in him so hard it shines! You and Jeff are SO strong and your boys are incredible! Feel free to message me if you would like to! I get the uneasy, long drives, scary children’s hospitals and to be honest to this day my son has epilepsy, asthma, heart condition, spd, autism and extremely bad allergies that lead to weekly allergy shots. Hang in there mama! God doesn’t give you more then you can handle! I remind myself of that daily! Love to you and your sweet family! God is SO good!!!
I’m sure they have checked her thyroid. But if not check it, might be a worthy check. Her parathyroid as well.
Prayersfor for everyone. Praying for strength for you and Jeff and calmness for Ms Nella. I know that God has your family in the palm of His hands. Just remember to lean on Him daily. ? Hugs to your family..
I am not normally religious, but I will be praying for you. Your family has had such a big impact on us. My husband and I felt called to adoption, but kept pushing away the thoughts. Reading about your wonderful experience with Nella really opened our hearts and we are now in the process of adopting internationally.
You all will be in our thoughts.
Praying for you guys
Thanks for sharing this with us. I will definitely be praying for all of you. Hang in there, mama. God is faithful. XOXO
Praying for her and you!!!
Hi Mandy,
You and your family are such a blessing to our family. We constantly check your updates and smile when we see how good God has been. He is Faithful and will not leave your family nor forsake you. Nella is in the palm of God’s hand and so are each one of your children. We are praying for you all, praying Peace in the journey, praying strength, praying healing over Nella’s little body. Our God is a faithful God and hears the prayers of His children. You are not alone and although we have never met, know there’s a family in Pennsylvania that will be fasting and praying for you all through this process. Thank you for sharing your life with us.
Sending our love and hugs for you all.
The Jimenez Family
God has planned your journey for Nella since the beginning. He hand picked you and Jeff to be her mama and daddy because he knew that she needed two parents that had an amazing and unfailing love for God and her. His perfect love will get all of you through this journey. Jehovah-Rafa, the God my healer!! You’ll see great miracles happen in her life and yours and what a great testimony it will be. As if you don’t have one already. Praying for you all!!
Praying for your family and sweet Nella
I will absolutely be praying for you and your family during this time of “unknown”. Thank you for the update. Hang in there!
Thank you Again for sharing updates on your beautiful Nella ! She is a blessing from God and her journey to her forever Rose family is by his hands only. My prayers will be full of Nella and for your ongoing sustainability of Faith, Hope, and Positive Strength. Only God has always been your belief on the Path to Janella!! My prayers are yours in unison. ~Lisa
Praying for you and your family. Our son had medical issues as an infant that were corrected with surgeries. Surgeries that may not have been available in other countries. I believe he was born to us for a reason, just as Nella has come to you for a reason. God’s plan unfolding. Hope you find moments of peace.
Continuing to keep Nella and your beautiful family in my prayers!
Praying for Nella and your family. I praise God in faith that she is completely healed and the doctors know exactly what to do. God is so good!
I’m praying for Nella right now.
As a Pediatric ICU nurse, I always tell parents that they are the best advocate for their child and to not back down from something they are concerned about. I think your are absolutely doing what your momma heart knows is right for sweet Nella! I will be praying for answers for you and for God’s healing hands to be over your sweet girl!!
I’ve seen your story on FB. I’m also adopted, so it’s great to see you opening up your home and finding room in your hearts for that sweet girl. My husband has a benign tumor on his pituitary gland. He was given shots to slow down his rapid growth and puberty at an early age. Now as an adult, he is otherwsie in good health as a first grade teacher. Be proactive and informed to make the best decisions for your daughter. Thoughts and prayers ?
We will be praying for sweet Nella and your wonderful family. As an adoptee and a Mama to a child dealing with health issues, I understand and feel for you. Take comfort in knowing that you are being lifted up in prayer.
Praying hard and many times for you all!! Hugs!!
Thank you for sharing your sweet girl with us. Many prayers for her and your family. God gave you this precious girl for a reason. May you have strength and faith during this difficult time.
Praying for complete healing for Nella. That the tests will go smoothly and quickly and not cause her any pain. I pray for peace for you and Jeff and that you will rest in Him. I pray the answers will come quickly and that if a solution is needed it, too, will come quickly. In Jesus’ Holy Name, Amen.
Sending so many prayers and so much love your way Mandy!!!
Sending a thousand prayers your way. We are currently in the same boat with my 7 year old…different trigger but pituitary issues as well. I hope you find answers and find peace in the unknown If that is what you are left with. God has his way of holding on tight and walking with you through all this.
I’ve loved following y’all’s story, not only with Nella, but in marriage, family, and parenting. I will be praying for everyone involved here and for a peace for your hearts and minds for each of you as you move forward!