These last couple of days have been a challenge for Liviana. I knew these days would begin soon...but I wasn't ready. Yesterday, most of the day she could not get comfortable at all and cried and whimpered on and off most of the day. She would have jerking, flailing motions throughout her whole body. We realized they were muscle spasms and they have been increasing. It is heartbreaking to watch. We try to keep her comfortable and I held her much of the day and even her sunbathing out on the balcony did not make her happy...it is usually a favorite of hers. I attempted twice to give her some pain reliever and it was a very challenging experience with LOTS of tears.
There have been lots of conversations where we have been told that a g-tube will be the best decision we could make. Liviana LOVES to eat. She makes requests, she devours almost everything you put in front of her. It is one of the last things she loves so much and she can still do (with some assistance). I did not want to take that from her. I realize though that given the increasing pain she is having with muscular and nerve issues and the difficulty getting medication into her that we may need to consider the option but still allow her to eat as she pleases daily by mouth. Sending her into surgery is scary. Her body seems so fragile these days and I don't want her to be in any more pain than the damn MLD is already causing her. We will likely wait until we get back to the states, which is promised to us to be the end of May. We will see though if that decision needs to change. I brought her magnesium supplement with me from the states (good thing since you can't get supplements here) and she chugged her water today with it added and we all can see a much calmer little body. Let's hope this can help her until we can get home.
I mentioned to someone on the MLD board that I feel like her Congenital Diaphragmatic Hernia was one big, "Ha, ha, Gotcha". I remember this moment so clearly.
This was the first time I held Liviana on her 14th day of life. I remember tears falling down my cheek onto her head as I thanked God for getting us to that point and for allowing us to keep her in our lives with our family. After carrying her for 18 weeks of the pregnancy, not knowing if she would live, this moment was took my breathe away but made me hold it in at the same time, so as not to forget the feeling of the experience.
It is hard to wrap my head around going through that, knowing she survived, thrived and looking in that face with thanks each day and then having this nasty, horrific, MLD start slowly taking her from us. An insightful woman on the MLD forum, named Susan said that maybe Liviana survived to save Giovanni. So true...and I will hang onto that.
This afternoon she has had a better few hours. She enjoyed her sunbathing on the balcony, devoured 3 pieces of pizza and has not had as many spasm issues though they are still present.
She had a nice bath which I think helped too. I wanted to take her somewhere to put her toes in the sand, water and feel the sun but I don't think that will happen. I hope when it does she can still see and hear the water and know she is someplace special.
Hug Your Babies!
Check up DAY!
3 weeks ago