Lilah had to miss her first holiday ) :

Josh's parents came up for Easter, and to see Lilah. My sister Kristin came with the girls, and my mom was here. We did an easter egg hunt with all the kids and the weather was beautiful!! 75 degrees, which in Maine in the early month of April is pretty rare. I was upset that Lilah wasn't here, but I just told myself that if she was healthy she wouldn't have been born until May therefore she wouldn't have been here anyways. I bought her a stuffed bunny to bring into the hospital for her, so I could feel like she had a little part of our Easter. When we arrived at the hospital, there was a little easter card taped to her Isolette. It was a little poem from "Lilah". It was extremely sweet and made me cry. Josh's dad said he couldn't believe how small she was. His mom said she resembled Chevelle. They stayed for a little while before heading home. I didn't ask if I could hold her this time because she looked so peaceful, I didn't want to disturb her. The nurse said she was doing well, and Josh and I stayed for an hour or so before heading back home.


This morning we decided to go in and see her because Dr. Allen said if he was going to need to put another drain in he would know by today. We walked in and no drain, but the nurse came in shortly after and told us that Allen makes his rounds later in the evening so they wouldn't know until then. I was dissapointed because I couldn't make it to the hospital later that day, Josh was working, but they told us they would call us, or we could call them. The nurse asked if I wanted to hold her because if she has the drain re-inserted I wouldn't be able to hold her again for a week. As I was holding her I noticed her oxygen levels were dropping, and the nurse came in to turn it up a little. She told us that moving her could have been the problem, for some reason her body responds better to being on her belly. As I was holding her the Nurse Practitioner came in and told me that since last night she had a couple de-sats, and congestion in her chest which could mean a possible issue with her heart. The neo doc ordered an ultrasound and they didn't find anything signifigant. They did find a heart murmur, but they said that was fairly common in babies, and it most likely will go away on it's own. They also said that when a baby is in utero the chambers of their hearts are open, and shortly after birth they close up, well Lilah's haven't closed yet so they are keeping an eye on that. I truly hope this is nothing, the last thing we need is heart problems to add to the list. Another nurse informed us that these oxygen sat problems could be the first sign that she might need the drain back in. I want her to get better without the use of a shunt, but it's extremely frustrating knowing that means another week without holding her, another week of her in the hospital. Even if these issues were resolved she still has to gain weight, feed and breathe on her own. She actually has lost weight since birth, going from 4 pounds 3 ounces, down to 3 pounds 13 ounces. They started mixing a high calorie fortified formula in with the breast milk to give her extra calories. I hope this works!


At this point I feel she may never get to come home. I have a fear that she won't know who I am, and that she will suffer in the long run from not having that contact with me. I have been having bad dreams lately, that the doctors tell me she is brain dead and that she isn't going to live. They are horrible and I wake up feeling so depressed. The other night I was thinking back to just a few months ago, when I told Josh I was going to put her in dance, because we never had the money before to enroll Chevelle. I then started thinking ahead to the future in that she may never walk let alone dance. I was reminded of the horrible past, years ago, when I found out Brittany had fallen into the pool, and I recall how the whole ride to the hospital I was crying out loud to my mother, I don't care if she is a vegetable on a ventilator for the rest of her life just please let her be alive. My mother reminded me of this the other day when I was crying over the fact the Lilah may never lead a "normal" life. I told her I only said that because I wasn't in my right mind. I am positive my perspective would have changed if she was left in that state. I even have a living will stating I wouldn't want to be kept alive on machines, so if I would not want it for myself, I certainly wouldn't for my child. I think the point she was trying to convey was that Lilah is alive, and breathing and seemingly ok for the moment, and that I had already been through the worst thing a mother could go through. I was able to get throught that, therefore I could get through this and any problems in the future. After all I have been through, it is hard not thinking about something happening to her, and how the hell I would survive something like that again, and could life possibly be so shitty to me, that it would deal me another hand like that. I am so glad I am able to move around a lot more, because I can start to occupy my time with housework, errands, and chores, instead of sitting here thinking dark thoughts and wallowing in self-pity. Well I am off to bed and I will post tomorrow after I know if she is back on the drain.