Making Progress

It's been awhile since I updated so I will try to remember everything that has been going on. There is not that much to report, mostly good news thankfully. Lilah is gaining weight fast, she is up to 5 pounds 10 ounces. Her neurosurgeon stopped by and said that she is healing beautifully. The shunt seems to be working well, and her head size has gone down a centimeter. The ultrasound showed that her ventricles are still large, but they haven't increased in size since the shunt was placed. She was almost completely off the oxygen before her surgery, but the surgery seemed to set her back a bit on her progress with this. It is a week after her procedure and she is almost back down to what she was before the shunt was placed (basically room air). She has been doing well with eating, tolerating her bottle feedings. She sleeps a lot, which sucks because if she is really zonked out she doesn't want anything to do with her bottle, and she has to eat a certain amount every three hours. So basically if she doesn't want the bottle they don't force it, they just give her the rest in her gavage. I noticed when I feed her I have to stop quite often or her oxygen sats go way down. It is nice to have a monitor to know when she isn't handling it well and I need to slow down. She finally is in a regular crib, it is so nice to be able to see her and touch her without having to stick your hands through holes in an incubator. Below is a pic of her in her crib, they will be sticking her in a metal crib with bars in a couple days:



















She's so happy she's in a big girl crib she's grinning ( :
















Another bit of good news, she had an eye test today, and passed with flying colors ( : Everyday she seems to be getting stronger. Sometimes I get so down thinking she is never going to come home, but than I look back over the last month and I can see how much progress she has made in that short of time. If she can come this far in a month, I am sure she will be able to come home soon. It's what keeps me going. My original hope was for Mother's Day, that would be the ultimate present. That doesn't look too promising, considering it's next Sunday, but you never know.


Josh has been working his butt off getting this business off the ground. I don't think he has seen Lilah in over four days. I feel bad for him because I know he wants to spend time with her, but he wants to be able to provide for us and pay our mortgage. I am sorry that the burden falls solely on him at the moment. He actually told me the other day that he was jealous that I got to spend all my time with the kids. I just reassured them that his kids will understand when they're older and that they will have nothing but respect for him, knowing how hard he worked to give them the best life possible. I am sure they will have a strong work ethic watching him break his back for his family. It has been hard for us lately with all the troubles, we have been snapping at each other more. It is hard not to take it out on the one you love, when you have so much stress in your lives. He keeps telling me that these are the times when we need to be on the same page, and stick together. We have been through some tough times in ten years, and we always manage to pull through, so I know this is just a little bump in the road. He is going to leave work a little early tomorrow and we are going to see Lilah together. I can't wait!! I want to thank everyone again for their support!