Any of you that know me and follow my blog know I try to remain as positive about things as possible, even in bad times.
I want to start this post off today with just that. I can't even begin to describe how much I love this picture and it brings tears to my eyes every time I look at it:
This was taken yesterday at our evening visit with the girls.
Well I am not really sure where to start this post, so here I go. Olivia is doing amazing and is now over 4lbs, had her OG tube removed and now has a dandy NG tube. She drank a total of 14mls out of a bottle yesterday. They seem to think she may be home before Halloween. Wonderful news!
On the other hand, Lilah is not doing so well. She is only 3lbs 4 oz as of today and is almost one month old. I met with the Cardiology team yesterday and they are concerned. It looks like she is going to need multiple surgeries and the first one could be as early as this week coming up. They want to go in and put a band around her artery which is also known as a Pulmonary Artery Band. This is major surgery and she will need her chest cut open to have this done. To say I am scared shitless would be a HUGE understatement. Is this a very common procedure? Yes it is. Do they perform many of the procedures on baby's that are 3lbs? Yes they do. Will it help her have a better quality of life and gain weight until her patch surgery? Yes it will. Is an amazing surgeon doing this surgery? Yes he is. In fact OU got this surgeon from the Mayo Clinic and he specializes in both these surgeries on premature babies. Does any of this make me feel better? No it really doesn't . I am having nightmares of my daughter dying. I try to be strong for everyone around me and mainly for my children. I am a mess inside. I know we have to do this surgery. In fact I know she needs this surgery to survive. I am just at a total loss right now. I also feel like a huge failure to my girls. I wish I could have carried them longer. I wish I could go through this surgery so Lilah doesn't have to. I wish I could carry all the burdens for these babies and they could just come home right now as healthy little girls.
I have found myself lately looking at other families while getting gas or going through a drive thru. I see them in their everyday life, doing their everyday activities. I sit there and wonder if that will be us someday. Will I have my little girls at the gas station pumping gas and heading to the park for a fun afternoon? Right now our lives consist of full time jobs and going to the NICU multiple times a day. I had a nurse and doctor tell us that " you guys are always here and you know what is going on with the girls better than anyone". After we left I told Al that in fact we are not there all the time and I feel I could be there so much more. The guilt of not being there all the time is unbelievable. I have never felt such guilt in my entire life. I find myself crying when I am alone because I am so overwhelmed with different emotions and I just don't know what to do . All I can think about is the "what if's"? What if I did things differently and both my daughters were here healthy. I asked about congenital heart failure and what causes it. Studies have shown that babies with these problems often had mothers who:
Took many medications during pregnancy X
Had gestational diabetes X
Had a family history of heart disease X
Yes I had all of the above. I know it will never be known why this happened and I know that the only thing right now is getting Lilah better so she can come home.
I would love to hear from any long term NICU moms and moms that their babies had one or multiple heart surgeries at such a young age and weighed so little. Please comment or email me at