I have left out an important detail of Vivian's story. We were informed shortly after Viv's birth that she ahs Turner's Syndrome. Turner's Syndrome happens only in girls, for it is a lack of one of the 'X' chromosomes. Turner's can have many consequences that are on a broad spectrum. Vivi's heart, liver, and now intestinal obstacles are all consequences of Turner's. What we thought was HLHS, is actually Turner's. Turner's is equally as rare as HLHS, as 1 in about 2,000 live female births are effected.
It has been an emotionally devastating few days for this mommy. It is very hard for me to find hope in my day to day, but I am committed to continue to live moment by moment loving Viv with me here. Rod is doing freakishly well with our new reality, he is definitely holding me up and keeping me afloat. I had to flat out ask him today if he realized if the doctors conclude this week that they can't do anything to recreate Vivi's SMV she will die. He replied very simply, "Yes. But this is nothing different than any other obstacle she has had. We must have hope that a miracle can still happen".
Crying to Rod today, I realize my hope and fear could be the same. My hope is for her to be normal. To be able to be held like a baby without tubes and lines. I don't want her to suffer anymore. I don't want to watch her ride this roller coaster if she can't get off it. My greatest fear, if that she dies. That I have to leave the hospital without my baby. That I will go home to a stroller set up in the laundry room and a high chair set up in the kitchen. To a room set up especially for her, but she will never be in it.
I believe that God is here, that He has never left, and that He never will. It is just so painful to be walking this road. Still now, I believe if God wants to perform a miracle, He can and He will. I also believe if He wants Vivi back with Him, He won't leave me, and I will have a saint in Heaven.
Vivi seems to be tolerating her feeds today, which is a blessing. She has thrown up a few times, but it has been mucusy, so we aren't thinking it is related to the feeds. We got back to the hospital today and she was wide eyed and bushy tailed--a huge blessing is that she as been so happy,not needing any medicine. We are with Viv, not the medicated Viv. Keep up the prayers, especially this defining week.