I know everyone wants to know any new news or updates we have on Aurora so I try to keep everyone informed just using these blogs. Now the blogs aren't the easiest to write and somethings are hard to explain in them because sometimes we need to see drawings of a normal heart and then see a picture of our baby girls heart to understand how it works and how hers is performing.
So last week I went to my doctors appointments finally after having to reschedule and cancel due to not having insurance and getting 0 help from one specific docotor requiring us to pay upfront. Anyways I finally got them to agree to a reasonable price. Sadly justin had to stay and work in Colorado and was not able to come to these appointments with me so that alone was tough but I had no idea how much I would need him until the first appointment. (We agreed and spoke if I were to get any bad news I'd wait for him to get off work or when he had a moment to sit down and listen to everything)
First appointment with the heart doctor where they do an echo and look at little miss Auroras heart went as about as bad as it could have. If anyone remembers me speaking about a "swinging door" between her upper chambers in her heart you'd remember last time it looked as if the door was still open allowing minimal blood to pass through which may be causing back flow into her lungs. At this appointment we learned that the door looks to be completely shut and there isn't any blood flowing and doctor also stated it looks thick to him as if the tissue has grown together. This is called severely restricted atrial septum and possibly intact. Well what does this mean as the doctor spoke and explained it I couldn't even believe what I was hearing. "In these cases where we have a baby who is facing HLHS, Turner Syndrome, and severly restricted atrial septum life just isn't compatible" he went on to describe why and how Aurora would not be a candidate for her first surgery Norwood because the machine used to keep these babies alive during open heart surgeries causes babies to swell and while she is already swollen or has fluid around her it would most likely be a case of the machine that is designed to keep her alive will sadly kill her.
Now the other step to this she was already looking at having an immadiate heart catherization after birth to open up the blockage between the two upper chambers but now as it looks as if that door has closed and possibly tissues grown together, the doctor also stated trying to do the catheter and get through successfully would be difficult and almost impossible if it's compleltely intact. He said the surgeons would try and try and try until eventually blowing out a vein and causing death if unsuccessful. If it did work this would only be a small step of progress while she'd be facing many more issues. Spoke about a hybrid surgery would be ordered if the catherization worked.
The next option he gave us as he teared up just explaining it was we could choose 'pallative care' we could choose to have every moment with miss aurora for however long that may be to see and feel her alive, with no medical intervention until she passed naturally.
Until hearing those words and seeing the doctor actually get emotional I had remained calm just listening to every word he had spoken waiting for a solution but once he said this and I actually could invision it I of course got upset.
We all did, I am very grateful to have my in laws as they went with me to these appointments and are there to hug, support, or just cry with, and I'm so glad I wasn't alone that day.
I did manage to ask a few other questions but can't even remember what they were but the doctor wanted me to speak to the pallative care team just to hear them and how they could help but that day I refused simply because justin wasn't there. Made our next appointment a month out because he said all we can do is monitor and just see how it goes.
Fast forward 10 minutes later we are now sitting in another doctors office (high risk ob) taking a few pictures of miss aurora but all felt rushed. The doctor comes in tells me she spoke to the heart doctor and wanted to know how I felt and of I had any questions. Well of course I did.. how's aurora other than heart? How is her cystic hygroma? How is her swelling? How is the amniotic fluid looking?
All we heard or all I interpreted was good news. Auroras cystic hygroma is almost gone completely just minimal fluid still extra skin though, her amniotic fluid went from 32 to 27 (normal 8 to 22) and her swelling doesn't look as bad. I said well this is good and the doctor just stated this is normal for fluid levels to decrease as In most turner girls it does before birth.
Well I took it as great news we could have always heard she was doing worse in those areas as well but nope she's improving. The other things spoken about were during there monthly meeting about different cases they see In the hospital and I was told aurora's case came up and they all seemed to have same opinion that with all of her issues she is facing that survival of surgery doesn't seem possible. She concluded to say she wants to have Justin there to discuss how we want to proceed with our care/ auroras care. So in leaving the doctors that day I took it as the ball is In our court just as it was when they offered abortion but we were both present to quickly turn down those options. So our next appointments will be big ones as we plan or try to plan for her arrival.
So Justin had been texting me during the appointments to check in and I just stated honestly that the appointment wasn't all good but not all bad either. Called him later and cried and cried trying to explain most of it but after every bad I had to follow with a positive I couldnt be apart and tell him all this. It's so hard and as he got quiet I knew it was tough hearing it and not being able to comfort one another physically or even read each others expressions. Just a very difficult thing to do is all I can say. I talked to my mother in law asking for advice and just talking about the options we've been given and I'll be honest I didn't know how to feel or react. This entire time, day one when we learned about Aurora having complications my fear was to hand her away alive in hopes of doctors saving her and In turn something going horribly wrong and the next time we see our daughter she wouldn't be alive. I've feared this since day one telling justin I don't know what I'd do if that happened if I handed away the time I would have with her we would have with her just to have it all taken away.
So that night I had the longest conversation with God. I spilled out every fear every dilemma that justin and I now are faced with. I asked him to open my eyes and ears and show me how he wants me to proceed with this, how he wants me to feel about it. I told him I don't know how to feel and I'm scared and I want his will to be done but we don't know his plans for us. Does he plan on aurora living 6 minutes or 60 years? I cant feel one way or another about this if I don't know what God wants so I just left it all to him.
Fast forward again I'm back with Justin late late Thursday night he was already asleep when my flight landed so the next morning we weren't able to discuss alot but quickly over lunch we were able to talk.
However it was just one day after I spoke to God that he opened my eyes and I know with everything In me he spoke to me. I've never felt so much at peace knowing and hearing from God that he's with us.
The little girl who was born august 20th with the same diagnosis as aurora. Her name is vivian and She had the same prognosis but her parents were told their daughter would never take her first breath she had a severly restricted atrial septum and didn't show blood flow between upper chambers. I gave her mom time to post all the wonderful pictures of miss vivian crying and beating the odds, before I could heart to ask how did she do with the catheter and how did the surgery go? Her reply was my answer I needed. "The doctors were wrong to put simply" they didn't see any flow between vivians upper chambers and had same outlook as aurora her lungs would be underdeveloped and the blood would be pushing back into the lungs causing a slew of problems since the doorway was closed. When little miss V was born what they saw now wasn't the same as they has seen in utero. So she didn't need the catherization.
All I can say is praise God and thank you!! Thank you for saving Vivian and letting her fight through and do exactly what the doctors said she wouldn't be able to.
Thank you God for my answer, it was at that moment I knew how to feel about Aurora. No matter what I hear from doctors no matter how grim it looks for her , God is in control and he can heal her. I can't lose faith just because of what I hear and see with my own eyes I have to trust God and not just when it's easy I have to trust him when it seems impossible.
I can't explain the peace and calmness I was experiencing when learning all this I know God's with us, I've always felt his presence but to get a direct message I can't describe How it makes you feel I only hope that I keep experiencing it!
The same morning I got a call and we were finally approved for insurance. We have been through all the hoops and loops for months on out since we learned Aurora was sick and finally to get that phone call was great! Same day the bill collector called and I was happy to give her the news as well hey you can go ahead and send that bill to the insurance. :-)
We have a long road ahead of us. I'm following baby Vivian and watching her beat the odds and I can only hope and pray Aurora is the same. Her parents are strong and it's sad to see anyone have to watch their helpless child in pain or suffer, but baby Vivian is strong and she will make it to her recovery period and have one heck of a story.
As always we ask for nothing but prayers from our friends and family. We need nothing short of a miracle to have Aurora healed and be able to beat every statistic and bad prediction thrown her way. Our God the one and only Almighty God can heal Aurora he can do anything. I feel guilt when I'm confronted with my deepest fears and I don't immediately know how to react but I do know God is in control of our lives and Auroras and he will see this through. I don't know her path nor ours but knowing he's there and we aren't alone is so comforting. Thank you all again for every concern and prayer sent up for us. We love you!
- tealah, justin, aurora
Friday, August 28, 2015
Sunday, August 2, 2015
glimpse at our miracle
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