10 weeks

Lillian is doing so well! She's been awake more the past few days and her personality is really coming out. She's showing a preference for things, like a clean diaper, a position to sleep in, a time to eat, etc. She lets us know when we aren't doing exactly what she wants ;). Thankfully she isn't throwing fits, but she'll let out a cry or a "fuss" when she needs to.

Thanksgiving was a big day for all of us. It was the longest car ride she has been on (2 hours) and she was around a LOT of family all day. She definitely didn't want to be held by a bunch of people, so she was over it by the end of the day. We'll have to come up with a better strategy for Christmas... like NOT skipping her nap.

I'm still pumping every 2-3 hours and finally started seeing an increase in milk supply this week. I swear every time I'm ready to give up, it increases just enough to keep me going!

Lillian has her 2 month appointment and weighed 10.5 lbs! She got her DTaP and rotavirus vaccine, both a week apart. She also had a bronchoscopy this week to check her airway for obstruction. The results came back great and thankfully her breathing is expected to improve as her muscle tone improves. Speaking of muscle tone, we met with the PT for the first time this week and I really like her! She suggested that in a couple months Lillian have 2 PT appointments a week on top of her one OT appointment. Whatever it takes to get her strong we will do. Plus, it's fun for Lillian, she just thinks we're playing :).

Some firsts this week were: First Thanksgiving, first trip to Madison to visit her extended family, first time in a restaurant (Opie Taylors on the square downtown for take-out), first Christmas lighting and Christmas tree, and first tailgate (IU v Purdue!).

There are so many times I think "I should write a blog about this" but never take the time to do it. One of those things I should devote a whole blog entry to is my husband. I can't even begin to describe how helpful and supportive he is. He is a GREAT dad to Lillian and a wonderful husband to me. There are times when I want him around that he isn't always there, but when I NEED him, he's by my side. He gets up for late night feedings so I can pump while he takes care of Lillian. He takes her during the day when I need some "me" time or when she's getting heavy, or just need a break. He shares his feelings about being a dad to a little girl with special needs. He apologizes when necessary. I just love him.

Here are some recent photos of Lillian:

Deep Breaths.

I don't know if it's just sinking in more, or if it's hormones, or just the roller coaster that I'm forever going to be riding, but this has been a very tough emotional week for me.

The older Lillian gets and the more she's becoming her own person, I can't help but just feel so sad that she is living a life that is going to be so hard for her. I look at her and just love her so much. I want so badly for everything to be the way we expected it to in the beginning. I want her to have everything that her peers will have. I want her to be active in school and have friends and boyfriends and get married. I want her to travel and be adventurous and go to college. The reality of her life is so different from what we want for her.

I struggle with figuring out how she brings me so much joy, when the thought of her life makes me so sad. I can't even put into words the love I have for her, and the joy she brings when she smiles or discovers something new, or even just when she sighs after a big yawn and rubs her eyes. I was doing so well not stressing about the future, but it's so hard to not think about when I'm faced with all the doctor appointments and therapy sessions and even though I know it's not a lost cause, sometimes it feels that way.

So much to say, so little time!

If only I could convince myself to take the time to write nightly reflections! (But just typing that first sentence I had to stop and talk to Lillian. She's quite fussy when she's fighting her morning nap!)

Lillian turned 8 weeks old Thursday and she's been showing so much personality! She loves it when we make faces at her, and even gave me a little giggle this week when we were playing. She stays awake longer, but sleeps through most of our trips outside the house. As soon as we get home she's wide eyed, alert, and ready to be entertained! This week we took our first trip to the park, and went for several long walks downtown with Zoe and Ayla.

Some pretty exciting news on the medical issues: I've contacted a doctor in Florida that has been a HUGE help providing so much information on ways to help Lillian, and giving us so much hope for the future. She is sending me information on supplements that will increase Lillian's energy and alertness since she's primarily getting breast milk. If we fed her formula, she would get some of them from the formula, but I would rather her get my immunities from breast milk and give her the other supplements separately.

She also answered some questions I asked about Lillian's future as an independent adult. She thinks Lillian will more than likely be able to live independently, and even suggested that they WILL have a cure by the time Lillian is an adult. Hearing that from someone who is currently researching Prader-Willi means so much. I truly believe there will either be a cure for the hunger issues, or something that will greatly help them manage their hunger problems... meaning she will be given the opportunity to have a healthy happy adult life without the need to be monitored by a care taker.

I'm so convinced that Lillian will have a fabulous life! I look at her and can't see it any other way. She's already doing everything she's expected to do, with the exception of her eating through the feeding tube. When we give her the chance to eat from a bottle she improves every time.

There are times I question what God's plans are for our future. I wonder if He changed His plans for us when we were pregnant with Lillian. It's crazy to think about this, but around 20 weeks I had unexplained bleeding and begged Him not to take our baby from us. We were supposed to go on a cruise 2 weeks later (which happened to be in the beginning of the swine flu outbreak in Mexico) and canceled the trip because we didn't want to risk more bleeding or have something happen that could jeopardize the pregnancy. Normally I wouldn't be so cautious and it was a last minute decision to cancel the cruise knowing we would lose the deposit we paid... Our doctor was pretty adamant about us staying home too. I can't help but wonder what might have happened if we went on the cruise. Yes, I know this is crazy, but sometimes I wonder what would have happened. Would I have gotten swine flu? Could we have had an accident snorkeling, or on another excursion? I'm so thankful for being given Lillian and the way things turned out, but it's caused me to wonder if God changes plans when he answers our prayers...

Some pictures of Lillian this week:

7 Weeks and pics

Age - 7 weeks
Weight - no update
Height - no update
Sleeping habit - She's starting to really fight sleep, but still sleeps well once she's asleep. She tends to flail her arms to keep herself awake. It's cute :)
Eating habits - She's getting about 95% breast milk now. She eats 80 ml every 3 hours. She's starting to take her bottle much better, really figuring out the suck-swallow routine
Favorite activity - She likes her activity mat and being held over our shoulders so she can look around.
Cutest Moment of the Week - She threw her first fit. It was so cute because she was just fussing and being really vocal. My mom was there to see it and we just watched her and giggled about it!

Milestones - She's starting to try to lift her head. She can lift it when on her tummy to move her head from side to side, but it irritates her that she can't lift it higher. She smiles at me when I tickle her, and she's all smiles first thing in the morning.
Firsts - She went to a store for the first time - a very small store called Barefoot Kids, we had our first stroller trip alone to the massage therapist, and she went to her first social party for a friend that made tenure at her job. She had her first real bath in her newborn bath tub.

Prader Willi Syndrome

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.

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.