Bleeding.. and I guess that's ok.

For a split second I considered not blogging about today's events because of the detail that brought us to the hospital. After that split second I realized that anyone who is praying for Annabelle and her journey right now deserves to know what is happening. The best resources we have found for Belle have all been through family and friends that find opportunities to shed light, insight or help in areas we are struggling, whether that be medical resources, hospitals, doctors etc. 

I also never, EVER want another little boy or girl to have to suffer what Annabelle is living, and if her story and experiences help shed light and answer mysteries for others, than I am proud to share.. and I know Annabelle would be as well. 

That being said, please do not read anything below without maturity or the most respect for our daughter and what she is currently battling. 

Please everyone, prayers, insight, thoughts - suggestions - advice... and mostly a lot of prayers are always, always welcomed. I have never experienced anything like what we have the last two days. We are lost right now and truly need prayers to help carry us to the next step for Annabelle. Thank you, xoxo



Thursday Night
Before putting the girls to bed last night, I laid Belle on the floor and stripped her down with her favorite pink monkey jammies picked out. I asked her, "Where is that belly button?!" and she giggled as she pointed straight to her tummy. A couple belly kisses and the most precious belly laughs you could hear later, I peeled each side of her diaper back to change her into a clean diaper and get ready for bed.

Blood. Again.

Only this time the blood wasn't sitting in her diaper in what appeared to be passed from her stool. The blood was covering all her 'little girl parts'. My eyes were huge and I gasped, I couldn't believe what I was seeing. In fact, I had to wipe and wipe and wipe and wipe and move my head about 5 inches closer after blinking several times to be sure I WAS actually seeing what I thought! I was so disappointed inside, I felt terrible for my little girl because I knew this wasn't ok. I smiled back at her... changed her diaper and continued belly kisses to watch my fearless daughter giggle before crawling into bed.

AK was working late last night, in fact, he worked 20hrs yesterday so during the roller coaster of starting our day screaming in the worst pain I have ever heard, passing a LOT of blood and finishing our day with sure bleeding - you can safely say I was exhausted in more ways than one.


Friday Morning
AK came home shortly after 2am from work and fell right asleep. I pulled myself out of bed this morning and went to work without much conversation between the two of us (I just didn't have that type of energy without coffee), I told him we needed to talk about some things later, I would also check the weather so we can plan the weekend.. we chatted about needing to get the grass cut etc. I ran to work and he called me about 45min later, "WHY IS OUR DAUGHTER ON HER PERIOD?!"

I asked if she was still bleeding and he told me she was. I called the pediatrician and was put on hold, Dr. Young picked up the phone immediately and said "WHAT?!" .. "Yea, I know... I don't know what to say. But yesterday when I called you and told you she was passing blood after screaming... Im pretty positive now that the blood was not from her stool at all, I think this was the cause." She ordered me to have her brought in immediately and I called AK to make that happen. I met him at the office.

Dr. Young immediately suited up with gloves. I told her, "The only thing that I can think of is that when she plays in the tub or between diaper changes.. sometimes she will 'play' or wiggle her little fingers down there in pure curiosity. Im reaching for anything at this point really, but maybe if she did that, maybe she cut herself with fingernails?" The only issues that I have with this theory is:

• A tiny cut would not contribute to the amount of blood I found in her diaper yesterday morning, it's simply not possible. 
• The last time she had a long bath was Wednesday night. It's now been two days and a tiny cut would not still be producing bright red blood like she is having. 
• Her fingernails are not that long.

Dr. Young cleaned all around and with a team of two doctors and a nurse, they all tried their hardest to find any cuts or lacerations without luck. They determined there were absolutely zero signs of injury, trauma, lacerations, cuts or scrapes. Even though Belle was 'cleaned up' thoroughly.. she was still passing pure red blood. Dr. Young looked at me and said, "Go to MCV ER immediately. Im calling them now so they will know you are in route. I will make sure they finally take this poor little girl seriously. Under ANY circumstances should a 2yr have vaginal bleeding like this, this is not okay at all."

I arrived at MCV and was immediately taken into our room. A doctor and two nurses joined us. The main Doctor, without a doubt seemed less than pleased to be working with me. I couldn't understand the frustration until she read off one of her first lines in our conversation:

"Yes.. yes, I saw all that. I saw that you've had done, Let me get this straight, Upper Endoscopy, repeat Upper Endoscopy, Lower Endoscopy, Brain MRI, Chromosomal studies, Bone Age Scans, Epilepsy Monitoring, more labs than a two yr old should ever need, so what is it exactly you're looking for next?" 

My jaw fell in the floor... all the while giving myself a pep-talk "Ashley, you will do Annabelle zero justice if you are wearing an orange jumpsuit, sitting in jail", I decided to set the tone right away, "I don't know lady.. I haven't exactly decided yet!! I haven't had the experience of a 22 month old with VAGINAL BLEEDING before! I was kinda hoping the hospital and your medical team could help with this."

She changed her tune once she realized just what type of conversation we would be having. She informed me, "well today we will only be assessing and treating Annabelle for the issue of this bleeding you have seen, we will not be addressing any of her other issues and very rarely is a child admitting for something such as bleeding like this." I then asked her if she would like to take a look before even making that decision. I also asked at that time that she bring the Attending in the room with her before we did this. I knew just where this conversation was going.. it wasn't going in Annabelle's favor and I didn't understand why. But the end of the story is that something is VERY wrong with my daughter, and I'll be damned if a Doctor with an attitude is going to overlook this urgency because of whatever bad taste she has in her mouth over Belle's chart.

Two nurses and Two Doctors watched as I revealed the bloody diaper that poor Annabelle was wearing. By this time, there was a great deal of blood pooling in her diaper. Immediately they told me that they were just scratches all around and wrapped the conversation quickly by telling me to put A&D ointment on her and let my pediatrician know if it gets worse. I asked, "Where?? Put A&D ointment on the source of the bleeding? Fine. YOU show me where that is, and I will do as I am told." The doctor continued to tell me that they were scratches, and I continued to argue that what she was pointing out was purely my little girls areas covered in dried blood.

Finally the Doctor came back into our room with news. She tells me, "Well I learned something today (not exactly what I wanted to hear), I just spoke with Endocrine and GYN and often times when issues like these happen with little girls, it's a result of a ruptured ovarian cyst or ovary. That would explain the amount of intense pain and screaming she had yesterday morning and then followed by the first heavy amounts of blood. We are going to do an abdominal ultrasound, they will be down soon to get you." I exhaled, thank goodness, they are actually thinking! 

Annabelle and I rode together in her bed for the ultrasound. The first tech struggled to even find the childs uterus, so he stepped to the side and allowed another woman to lead the show. Annabelle was better than you can imagine. She literally laid there on her back the entire time and hardly ever moved. She NEVER attempted to roll over or sit up, when she got antsy, the ultrasound tech gave her another wand to play with and she stayed entertained. She wasn't feeling well, she was exhausted and she reallllly needed a nap. Despite everything, she laid there for well over 30min without moving or arguing. I was beyond pleased with my little girl.

During the ultrasound, the tech jumped with relief, "There! You see that, right there! That's where the bleeding is coming from. Zoom in and capture that picture. That's where it's at". AK and I looked at each other in silent relief and smiled.. we knew this would mean answers for Annabelle, if felt SO nice to feel justified and I just couldn't wait to see the woman's face downstairs when she read the results. 

We were taken back to our room in the Peds ED and the Endocrine Team met us shortly after. This team was on the exact same page as the first Doctor. She explained that they see no reason to do any bloodwork or check for any hormone levels because Annabelle didn't appear to have 'breast buds' to indicate that was a concern (btw. we never did any type of labs or any bloodwork while we were there at all). She too looked at Annabelle as I took her diaper off and attempted to tell me in several different ways, "She's likely just scratched herself and she's irritated." I was beyond furious.. but in the back of my mine, anxiously waiting for the ultrasound results because regardless what this woman's opinion was right now.. I knew the ultrasound would say otherwise. The Endocrine Doctor then begins to question AK and I about hygiene and nail trimming. She wanted me to explain to her how I wipe and care for my child (she clearly doesn't know how OCD I am about cleanliness and my poor children that get scrubbed down constantly.).. How often her nails are cut (I don't know.. twice a week?) and when she had loose stools all day yesterday, how often were they changed and the contents could likely have irritated her areas to cause the bleeding. This woman was beyond ridiculous. I explained to her over again.. "No, Im sorry. Maybe you also didn't get the message from my pediatrician that swabbed Annabelle several hours ago and proved that this is not a result from cuts, but this is all a matter of vaginal bleeding." I exhaled until she decided to go read the ultrasound results.

The first Doctor came back into our room. "Well the ultrasound showed no signs of bleeding or any areas of concern at all. Like we said before, just put some cream on her and if the bleeding gets worse, call your pediatrician". 

I am speechless. Again, all I wanted to do was cry. I was so upset and lost for words. Here I am with a poor little girl that has spent the last 24hrs in the most excruciating pain, spent the last several days sleeping all day and night, and now pouring blood but none of these problems are a concern? Add to these, all the issues we are having outside of this one episode, and no one wants to help my daughter. She told me, "Im really sorry that you seem to think we don't care." At this point I was done. I was furious, "Woman! You don't care at all! You know damn well that this is not normal. You knew about her chart far more than I could tell you before we even walked in this hospital and you knew everything this child has been through. You have seen how many times we have been in this emergency room... I have carried that baby through those doors barely conscious when I wasn't able to wake her.. I have carried her in here with a 93 degree temperature.. I have carried her in here with 105 temperatures.. She has visited for seizures and now vaginal bleeding and every single time, all you Doctors smile and tell us you are sorry you can't do more but you do care. You're full of shit and you haven't done anything YET for this little girl. She's fighting her butt off and soon she's going to give up if we can't help her. She can't take much more... that bleeding is a result of something and it's hurt her.. it hasn't stopped for two days and is continuing to bleed. You are sending that baby home, and that's on your conscious. You are all making a bad decision."

Needless to say, we are home. 

Before I left the hospital, I talked to my pediatrician over the phone. She had been in contact with the Doctors at MCV ER the entire time we were there, and she was giving them hell. Here is what I didn't know, what was discussed, what the plan is, and also what contributes to my final amount of lost respect for the medical world.

Bleeding is coming from somewhere, clearly. In order to find the bleeding, Annabelle strongly needs a pelvic exam performed. To do so, she has to be put under anesthesia. Here's the thing, if Annabelle is diagnosed with Mitochondrial Disease, anesthesia can have a negative affect on Mito, therefore Dr. Teasley needs to be informed before anything like this can take place. Dr. Teasley was notified today while we were in the emergency room, that Annabelle was there being seen for vaginal bleeding and the source couldn't be found, nor could the pain. She was notified that GYN wanted to perform a Pelvic Exam but needed Dr. Teasley's clearance beforehand. Dr. Teasley will not grant permission to put Annabelle under anesthesia for such a procedure until after she see's Annabelle. And, she will not see Annabelle before next Thursday. So for that, we are left with nothing else to do in the hospital but to go home and wait again, for next Thursday. 

I am furious... I could continue to write and write and write about how I am feeling, processing and my thoughts but at this point I assume they are the same shared by you. Frustration. Furious. Angry. Disappointed. Helpless. Sad. Pissed. Defeated. Confused. Bitter. and generally.... numb for this poor child. 

The only things I can pray for right now are that whatever pain plagued Annabelle yesterday, never ever returns. I pray the bleeding stops, I am praying with everything I have that the bleeding stops; as of 8pm tonight she was still very much bleeding fresh blood. I am terrified that I know something has caused this to happen, and I hope it isn't doing more damage by not being recognized. I also pray that the team of doctors and my pediatrician will continue to support me and my mission with Annabelle if/when I grab her pre-packed diaper bag and load into our car on a full tank of gas and head East to the Children's Hospital of The King's Daughter's. At the FIRST notion of any amount of pain, extra amount of blood or any changes at all what so ever, we are going. I hope that decision will not hurt the plans for next week or the judgement from my pediatrician, but at some point - I cannot play by every single rule to help my daughter, I have to play by the book that says, "When your child is in pain and truly needs help - get help". I cannot believe we are home with her in this condition right now, my mind is so very confused. It's amazing to me. The medical system is a damn joke. I just hope Annabelle makes it out of all this... I am right beside her, fighting with every single thing I have.With God in my back pocket leading our paths and my heart guiding us towards what is best for Annabelle Grace. I hope I am doing all this right... Annabelle needs help, she needs prayers, she needs that one incredible doctor out there that will have all the answers for her! She needs to make it past next Thursday, which will gain us our stepping stone to taking Annabelle where she will get everything she needs.