For whatever reason I have never wanted to turn my non-private blog into anything similar to my private journal, but as circumstances in our little family's life are progressing, I have felt stronger and stronger there are things that need to be shared with those who are so concerned for us.
7 weeks ago, Dan and I went to the doctor for our monthly check-up, greatly anticipating finding out the gender of the little baby we affectionately called "Lou" (we do live in St. Louis after all). We were both shocked (but super excited) to find our hunches were incorrect and we were having a girl!! (New fetus name: Loula.) But something just didn't seem right. While we waited to see the doctor, we just assumed that whatever was wrong had something to do with the placenta previa I had been diagnosed with one month earlier. A couple of doctors returned, and after another 20 minutes of ultrasounding (totally just made up that word), we were told our baby had a tumor.
They didn't have many specific details for us - just a lot of generalities. We were referred to a specialist and had to wait 3 weeks before the baby was big enough to do any further testing. Dan left for his internship in Utah just days after we heard the news - so for over a month we kept in touch via skype, while amazing friends from the ward rallied around me in St. Louis.
Of course the prayers and messages of concern began pouring in from the beginning. We didn't shout it out the world, as we didn't know much about our specific situation, but somehow people began finding out, and we were lifted by the prayers and fasting of so many family and friends.
After extensive testing, we have learned more. This tumor is rare (about 1 in 40,000) but our specific case hits the extremely rare button with the way this tumor is developing and growing. It is based off her tailbone and is growing (mostly externally) at an alarming rate, due to the 2 arteries that are feeding it blood. We affectionately call it her "ghetto bootie" as the mass is now slightly larger than the size of her head.
These tumors have a mind of their own and no doctor can predict how one will behave differently from another. The biggest cause for concern in our case lies in the fact that her little heart has to work over-time to supply blood to her body and this tumor, and without intervention she will eventually go into cardiac arrest. This process has been a watching and waiting game as we watch for signs that lead to heart failure.
Last week, Dan and I felt strongly that it was time for him to return to St. Louis. Through a miraculous chain of events, he made it in at midnight the night before our appointment last week. At this appointment they saw signs of anemia in the baby (not enough blood for both baby & tumor), so we underwent an operation where the doctors gave her a blood transfusion through her umbilical cord. At the same time they reduced the crazy amount of amniotic fluid I had been carrying (another result of the tumor - they took out more than half a gallon!). Teams of doctors were on stand-by during the procedure in case anything went wrong, so they would be ready to deliver our baby at a moments notice. Answers to prayers came in a big way that day - everything went as smooth as it possibly could have. Both mom and baby tolerated everything well, and the doctors were extremely pleased with the results and the fact that it bought is at least a few more days.
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| Dr. Ditto! Possible career change in the future? :) |
I cannot describe to you the tender mercies of how blessed we are to be in St. Louis with a team of doctors who can actually handle us. While we are far from family, we are close to excellent care, and are extremely grateful for that huge blessing from the Lord. They are incredible and have been conversing with doctors throughout the country on the best course of action (I often wonder if our head doctor ever sees his family with how much time he puts into us - and we're only one patient!)
Despite the positive outcome of last week's procedures, things are developing in a way that heart failure will occur if we don't intervene soon. Decision time has come. We could deliver early and remove the tumor once she is stable (usually within days), or the doctors perform fetal surgery by removing as much of the tumor as possible without actually giving birth, which would give her more time to grow and develop inside the womb and a more invasive surgery would occur after birth. All options are risky for many different reasons, but it's looking like something will happen either by the end of this week or beginning of next. Continued prayers are that the doctors will be guided to the best course of action for our family.
If anyone is actually still reading this eternally long post, this is for you:
I was reminded this morning of a talk given at General Conference a few years ago by Bishop Richard C. Edgley - titled "What Happens to One, Happens to All." He described several instances when wards and neighbors rallied around those who were facing difficult trials - ward members helped and felt compassion as if the trial had happened to them. As one who in years past has felt the effects of prayers from others, the St. Louis Ditto's extend our deepest appreciation to those of you - known and unknown - who have petitioned the Lord in our behalf. Your prayers and fasts have been heard and we are being sustained by an incredible unseen power that is stronger than if you were all here to offer physical hugs and words of comfort. We are grateful to the Lord for His kindnesses in dealing with us, and know He is aware of our tiny little family and our needs at the moment. We have faith that through the atonement of Christ, all will be made well, and all will be made right. We have hope and faith that our little girl will live a full and long and healthy life. But if not, we know the Lord will take care of us as He always has, and as He always will.
