We still do not have a definite answer on what this thing is that is inside our baby. But right now she said the first step it to just wait until he is born to say conclusively what it is. He will have a sonogram on himself after he is born-within that first day. She said that he will be checked for all his vitals and they'll check his breathing and make sure all those normal things check out and get him cleaned up, have his first bath, hopefully get a feeding in and some cuddles. Then they will take him down for a sonogram and that should tell them exactly where and what it is. After she takes a look at the pictures she will have a consultation with us and let us know what the next steps will be. If for some reason they are still not sure what it is after the sonogram then they will order a CT scan. Also, after he is born they will be taking a urine sample to check it for catecholamines, which are present in 95% of patients with a neuroblastoma. Or if for some reason this thing has grown tremendously and is very large then they would do a biopsy on it right away.
If they conclude that it is neuroblastoma and it is not too big of a tumor (more than 3-5cm) then most likely the course of action will be minimal. With first just watching and checking on it with sonograms and urine samples. She said that in a lot of cases a neuroblastoma tumor diagnosed in utero will actually go away on its own within 6-8 months or even a year. If it appears to be growing and/or the catecholamines in the urine are increasing then we can talk again about what needs to happen. Possibly chemotherapy and surgery to remove it. If it does turn out to be neuroblastoma then an oncologist will also be brought on board to help with the treatment plan. (If it is neuroblastoma and we don't feel comfortable with the plan of action they are taking then we may discuss having his treatment elsewhere but I think we will cross that bridge, when and if we find out it is cancer)
She said that if it is an adrenal bleed or a cyst then they actually don't do anything. That those things will resolve on their own and there is no need for surgery. Of course there were even a few more differentials of what it could be, but it seems like a bleed, a cyst or a neuroblastoma tumor are the three things that they seem to think it will end up being. She said that an adrenal bleed is much more common than a neuroblastoma. But whatever it ends up being, they have dealt with it before and they should be able to take care of it. Of course there are always a few crazy cases but most likely it will be fine.
As long as the sonogram shows that there is nothing majorly wrong or something that needs taken care of right away, we should be able to bring him home in the same time frame as normal! That is very good news for this mama to hear! Of course we still know that it is possible that it will show something that needs taken care of immediately but we are praying that it is something that will not be serious!!
Also, I asked if giving birth could cause any problems with whatever this is, like rupturing it or bothering it or whatever and she said that it would not be a problem.
Also, we are not quite sure why the specialist seemed so sure that it is neuroblastoma and that he will have surgery when no one else seems quite as sure. She even recommended that we tour the NICU in case he needs to be there for awhile after surgery. But maybe she was just covering her bases and making sure everything was lined up for worse case scenario. But both surgeons seemed like it probably wasn't going to be a big deal and they both seemed like they weren't quite sure why we were there in their office since we don't even know for sure what it is. It's just that one surgeon was much nicer about it than the other.
I have another sonogram tomorrow at the specialist's office and then an ob appointment right after, so again we will see if it is changing or growing. I will be 37 weeks tomorrow so he should be good to come anytime! Of course I have never been early before so we are counting on this one being no different =)
Thank you all so so much for all the prayers and everything else you have done for us! People from church have made us meals for those days when we are busy with appointments and even a certain someone came and did my dishes and cleaned up the house while I was gone today =) And others have helped out by babysitting. Thank you!! We still have many more appointments ahead of us it seems like, but for now we are happy with the report from today!!
For a day that started out not so great with Titus getting Kindergarten shots and Lillie getting started on antibiotics for an infection that started- who knows how- in her toe and had red streaks going up her foot and ankle. We are in good spirits. And we praise Jesus for his protection and Him giving us a peace that passes all understanding.
Last night and this morning I was actually quite overwhelmed and exhausted and nervous about meeting with a surgeon again and I was worried about Lillie's foot with the red streaks and then the doctor being very concerned as well about the redness and saying the infection could get into her blood stream and be very serious. When we got back from our first appointments this morning for Lillie and Titus, I just crashed until it was time to leave again for the surgeon appointment. But now as I am writing this, I feel much much better and I can only say that it is because of our Savior's amazing grace and how He cares for us and how He has used different people in our lives to encourage us on this journey. So thank you again to everyone who has encouraged us by praying and cooking and cleaning and everything else!!
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