October 21st we got Lillian's diagnosis. She has a genetic disorder called Prader Willi Syndrome. I don't want to go into details about what that means because frankly I'm tired of explaining it and anyone can easily google it. If you care to know about the disorder, check out www.pwsausa.org.
The bad news is - there's no cure. The good news is, God gave us a beautiful little girl, she's healthy, she has a huge family that loves her VERY very very much, and lots of friends that will treat her no different than any other kid her age. We are truely blessed.
I've learned a lot in the last two weeks thanks to this tiny little person. I've learned how important and how wonderful it is to live in the present. I've learned not to stress over the future, because situations change, life throws you curve balls, and the best times in life can be wasted worrying about what is yet to come.
I've learned that it's ok to be disappointed. We try to plan things in life, we have expectations, and when those expectations aren't met, it's ok to grieve. Grieving is healthy and an important step to moving forward.
I've learned to love unconditionally. I thought this lesson was learned when I married my husband... boy was I wrong! I look at my daughter now and I don't see the feeding tube. I don't dwell over the thought of taking care of her for the rest of her life, the time and energy it will take to keep her healthy, or the lost dreams I had for her. I have new dreams for her now and they are no less important than the ones we previously had, just different.
I've learned to accept help. I've learned to lean on other people when I'm not strong enough to get through the day. I've learned to count on faith and love and God.
These past two weeks have changed my life forever and I'm so grateful that God has chosen us to be Lillian's parents. We may never glide through life easily, but we will be stronger, grateful, and more faithful because of her.
If you're following this blog, it's taking a different turn. Until now I've kept it pretty much surface stuff. Things like updates and milestones and cutesy pictures. There will still be updates and milestones and pictures, but there will be more posts about ups and downs as we go through this journey of being Lillian's parents. I hope one day she can read it and see how much we love her and will do anything for her... and she'll get to follow her progress to being the amazing woman I know she will be.
11.01.2009
6 weeks
Age - 6 weeks
Weight - 8lbs 3oz
Height - 21.5 inches
Sleeping habit - She still sleeps quite a bit, but she has her predictable wake moments. Usually 5am, 7am - 9:30am, 11am-12pm, 2pm - 5pm, 7pm - 9pm.
Eating habits - She's still eating mostly through her feeding tube. She's at 75ml every 3 hours this week. She's still getting half-3/4 breast milk and the rest is supplemented with formula. She eats from a bottle 5mls twice a day.
Favorite activity - She likes to visit her grandma and watch the fan on the ceiling!
Cutest Moment of the Week - She sighs when she yawns. It gets me every time :)
Milestones - She's doing better holding her head up. She still has a long way to go, but can lift her head up and move it to the side. She rolls on to her side, and she also puts her fingers in her mouth!
Firsts - I started bottle feeding her this week a little bit. She also wore her first dress, and celebrated her first halloween! She met her cousins for the first time and went for her first drive alone with mommy :) She also cried for the longest period of time during her sleep study :( It was sad, but nice to know she could actually cry.
Weight - 8lbs 3oz
Height - 21.5 inches
Sleeping habit - She still sleeps quite a bit, but she has her predictable wake moments. Usually 5am, 7am - 9:30am, 11am-12pm, 2pm - 5pm, 7pm - 9pm.
Eating habits - She's still eating mostly through her feeding tube. She's at 75ml every 3 hours this week. She's still getting half-3/4 breast milk and the rest is supplemented with formula. She eats from a bottle 5mls twice a day.
Favorite activity - She likes to visit her grandma and watch the fan on the ceiling!
Cutest Moment of the Week - She sighs when she yawns. It gets me every time :)
Milestones - She's doing better holding her head up. She still has a long way to go, but can lift her head up and move it to the side. She rolls on to her side, and she also puts her fingers in her mouth!
Firsts - I started bottle feeding her this week a little bit. She also wore her first dress, and celebrated her first halloween! She met her cousins for the first time and went for her first drive alone with mommy :) She also cried for the longest period of time during her sleep study :( It was sad, but nice to know she could actually cry.
10.19.2009
Early Intervention
As much as I'm thrilled that Lillian is able to get the help she needs, it makes me so sad to know that she's being evaluated by a complete stranger tomorrow who will ultimately decide what kind of therapy she needs without even knowing a diagnosis.
I want her to start therapy. I want to help her. It just makes this all a reality that I haven't had to face for the almost three weeks that we've been home from the hospital. Those three weeks we haven't had to hear negative comments about her condition and we haven't had to talk about the troubles she'll face in the time ahead. We haven't had to do anything but love her and treat her like any other newborn baby. I really don't want that to change.
Even though we haven't been faced with doctors or therapists for the last three weeks, there's still a little voice inside me that questions her every movement. Are her movements normal? Is she holding her hands the right way? Should she be able to move her head more? Does she sleep too much? Am I expecting too much from her? Am I doing enough to stimulate her? Why doesn't she cry like other babies?
Part of me is still holding out that all of the doctors are wrong. They saw a baby that is calm and content and decided something was wrong with her and have been trying to diagnose her every move ever since, and along the way convinced us that something is wrong with our baby. I know that it's a crazy thought, but it's easier to be in denial about everything then have to deal with it.
I guess I should go back to taking things one day at a time. At least we know she will start getting the help she needs after this evaluation.
I want her to start therapy. I want to help her. It just makes this all a reality that I haven't had to face for the almost three weeks that we've been home from the hospital. Those three weeks we haven't had to hear negative comments about her condition and we haven't had to talk about the troubles she'll face in the time ahead. We haven't had to do anything but love her and treat her like any other newborn baby. I really don't want that to change.
Even though we haven't been faced with doctors or therapists for the last three weeks, there's still a little voice inside me that questions her every movement. Are her movements normal? Is she holding her hands the right way? Should she be able to move her head more? Does she sleep too much? Am I expecting too much from her? Am I doing enough to stimulate her? Why doesn't she cry like other babies?
Part of me is still holding out that all of the doctors are wrong. They saw a baby that is calm and content and decided something was wrong with her and have been trying to diagnose her every move ever since, and along the way convinced us that something is wrong with our baby. I know that it's a crazy thought, but it's easier to be in denial about everything then have to deal with it.
I guess I should go back to taking things one day at a time. At least we know she will start getting the help she needs after this evaluation.
10.18.2009
10.15.2009
4 Weeks and pics
Age - 4 weeks
Weight - 7lbs 11oz
Height - 21.5 inches
Sleeping habit - She sleeps a lot still, but tends to wake up around 4am, 7am, 2pm-4pm, and again around 7-9pm
Eating habits - She's still eating through her feeding tube. She's at 65ml every 3 hours this week. Right now she's getting half breast milk and half formula.
Favorite activity - She loves to have tummy time on mommy and daddy, sleep, and be held and talked to.
Cutest Moment of the Week - Her uncle Cullen was holding her for the first time and she screamed the loudest scream in her sleep. It made us all laugh because she's usually so quiet!
Milestones - turning head from side to side, making eye contact, following voices with her eyes
Firsts - She wore her first cloth diapers this week and also bounced in her bouncer for the first time! Her first outing was to visit some friends at a camp site, and her first public outing was to Oliver Winery for some fall pictures!
Weight - 7lbs 11oz
Height - 21.5 inches
Sleeping habit - She sleeps a lot still, but tends to wake up around 4am, 7am, 2pm-4pm, and again around 7-9pm
Eating habits - She's still eating through her feeding tube. She's at 65ml every 3 hours this week. Right now she's getting half breast milk and half formula.
Favorite activity - She loves to have tummy time on mommy and daddy, sleep, and be held and talked to.
Cutest Moment of the Week - Her uncle Cullen was holding her for the first time and she screamed the loudest scream in her sleep. It made us all laugh because she's usually so quiet!
Milestones - turning head from side to side, making eye contact, following voices with her eyes
Firsts - She wore her first cloth diapers this week and also bounced in her bouncer for the first time! Her first outing was to visit some friends at a camp site, and her first public outing was to Oliver Winery for some fall pictures!
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