Lillian of course is the most stressful of them all but I have the nurses and doctors of Seattle Children's right there at my side to help. I know that this hospital stay is temporary. Yes, it has been long and emotional but I am glad that they are there and willing to help. Never knowing if this is Lillian's last day drives me to be there for her no matter what. I have only missed two days of her whole hospitalization and that was because I had the flu. My girls are my everything and nothing except for the possibility of getting them sick will keep me from them. Dr Law has told me that I would be very nervous if I really knew how bad her heart really was (Lillian likes to pretend that she isn't as sick as she really is). What Dr Law doesn't understand is that I DO realize just how bad her heart is. That is why I am with her as much as possible. But even with knowing how bad her heart really is, I don't believe in freaking out and having a pity party for myself. It's not about me; it's about Lillian and making sure that she has the best damn life she can given her circumstances. I will not settle for leaving Lillian in the crib all day when I know she yearns for social interaction. A lot of doctors and nurses have encouraged Andrew and I by telling us we are very dedicated parents. To be honest though, we don't really feel like that dedicated of parents. We are with Lillian every day for the vast majority of the day, but we do get to go home every night, while she doesn't. There are parents who are able to stay with their kids the whole time they are in the hospital, but we need to think of Annabelle as well. But as I spend more and more time living at the hospital I can start to see why they say that. I have seen countless babies lay in their cribs all day except when the nurses come in to do vitals. The nurses at Children's are slammed, I completely understand why they can't sit and play all day with any child, even though I know deep down they would love too (we know this first hand too as in the rare down times some will come and play with Annabelle). And frankly it's not their job to sit and comfort your child, that is our as hospital parents. I have tried to have excellent relationships with all the staff at the hospital because I know that despite wanting to never leave Lillian's side I have to, and they are there for her and do go above and beyond to make her happy.
Yes, being confined to one floor of the hospital for five months has been stressful at times and boring at other times but I have my girls to keep me company.
Yes, we have been told we could take Lillian home and wait for transplant there. And honestly, it would be far easier for us if she were home. Being in the hospital day in and day out puts a lot of stress on me, my family and my marriage. But I will not do so as if anything happens to her here we would be ill equipped to deal with it and she would be far away from the care she could receive staying at the hospital. Frankly I won't let some inconvenience put my child's life at risk. I would rather give up my day every day if it means she is safer overall.
Basically when it comes to Lillian I will do what is best for her, not what is convenient for me. 99% of the time I do what the doctors tell me to do. I am Lillian's mother but they are the experts that have been saving countless children's lives and I will adhere to what they have to say. Working as a team with the doctors has been what is in the best interest for my daughter and look at how well she is doing.
Now to some other questions. Most of the time I forget I am even pregnant as keeping the other girls busy and making sure they're having fun is my utmost priority. Ailah is due at end of May which is coming up a lot faster then expected but I have no complaints. After 16 months of being pregnant, with a month break, I can honestly stay i am done for a while. She couldn't have come at a worse time but we are still excited to welcome her to the family.
Annabelle is my little side kick. She helps me take care of Lillian most of the time, and brings a lot more joy to my day then stress. She is way too smart for her own good and is constantly making me laugh. I know Annabelle loves seeing her sister as well. This is why I choose to keep her with me at the hospital rather then send her to my moms. I know my mom likes to have her every now and again just to see what crazy little thing will come out of her mouth (she could have a whole episode of Kid's say the Darnedest Things to herself, and Andy is joking about starting a Twitter account devoted entirely to what she says) but I feel a great obligation to take care of my children as opposed to letting other people. I know I am very lucky to be a stay at home mom and will never take it for granted.
Whether Lillian makes it though or not, I know she was given to Andrew and I for a reason. She has already taught me patience, companion, and most of all how special life really is. God has big plans for my girls and I want to do my part to make sure they achieve it.