The day we've been waiting for. I never heard the UPS truck in our driveway but Phil appeared in the living room with a big brown box and I just knew what was inside. Opening that box was like opening the gift of life for Lillian. We took out every item and spread them out on the floor in our living room. We read over every piece of information carefully, soaking it all in.
After we fed Lillian her dinner we both agreed it was a good time to try for the first time. She had a full belly and was perfectly content sitting on my lap while I sang to her and pretended to nibble on her fingers. Phil prepared the medicine just as the instructions listed and I distracted her as he gave her the first growth hormone injection. She wiggled around a bit and looked around as if she was trying to figure what was going on... and then it was over. We both let out a huge sigh of relief.
I can't help but feel like this is the day we gave her life. I know that God brought her into this world four months ago with a plan that is too big to understand, but I feel like what we started for her today is giving her a second chance at life. We're giving her the chance to not fall behind and whether or not it makes a big difference or a little difference, at least we are doing everything we can for her.
So now this is our new normal. We'll do this every day for as long as it takes to help her develop and grow physically and cognitively. We're so proud of her progress this far and so thankful we can help her muscles develop more so she can move and play and smile and enjoy life the way she deserves to.
Earlier this week Lillian had a swallow study to test her ability to take her bottle and to check for aspiration. The results didn't come out as we were hoping, but we know that with time her body will strengthen and she will make improvement. The doctor suggested we rub a little food on her lips and let her explore different tastes without actually feeding her the food (and the extra calories). Today she had a little taste of blueberry pomegranate applesauce :). Seeing her explore the taste and texture of this foreign substance on her lips was priceless! As difficult as it is to wrap my mind around WANTING her to eat food, it's so important to instill healthy eating habits in her. We had all intentions of feeding her veggies first, but the applesauce was already in the refrigerator and it's organic with no sugar added... so it felt OK. I might puree some veggies sometime this weekend and let Phil experience the fun of watching her explore this new sensation.
(Lillian tasting blueberry pomegranate apple sauce!)
We're still waiting to actually start feeding her solids until she's 6 months old, so I'll probably just let her experiment with this "lip gloss" method a couple times a week.
Hopefully tomorrow I'll have enough time to finish Lillian's blue and white tutu for the big Super Bowl game Sunday! We'll post pictures Monday morning after the Colts beat the Saints as a celebratory blog post :D. GO COLTS!
First I just have to say, I jumped on the chance to *meet* more of the people that read this blog because I'm always amazed how sweet, understanding, and compassionate you all are. At first this blog was created as a journal for sweet little Lillian to see the progression from growing in her mommy's belly, to making her first appearance, rolling over, crawling, walking, etc. Then, when we were given Lillian's diagnosis this blog became my only outlet. The only place I felt comfortable talking about my feelings of doubt, sadness, loss, and desperation for feeling "normal" again. I never imagined the words of strangers could be so uplifting and encouraging. I never even thought for a second that people would be interested in our life story. So THANK YOU for taking the time to say hello, post a comment, and for encouraging me to stay strong and be a good mommy for Lillian.
Question #1 from Heather - "How did you find out you were pregnant with DD and what was your reaction?"
I found out I was pregnant with Lillian on New Years Eve 12-31-08. It was our fourth cycle trying to conceive. We were having people over that evening for a little New Years party and I wanted to make sure it was ok to have some champagne with everyone, so I tested... at WORK! lol. Probably not the smartest on my part, because when the test said "pregnant" I about fell over and passed out in shock. The rest of the afternoon I was worthless at work and had the hardest time concentrating. I walked around with a rediculous smile on my face all day, and convinced Phil to come to my work for lunch. I told him about it and he was shocked and happy. My best friend was in town that day and I told her and her husband (she was about 5 months pregnant) and I called my other close friend and told her too. We didn't tell any other friends or family until I was between 8-12 weeks pregnant, and luckily my friends know how to keep a secret. :)
Question #2 from Olivia - "What are your favorite blogs to read?"
My favorite blogs to read are...
The Thomas Chronicles - Mrs.Bro is hilarious, sweet, and has a handsome little baby named Thomas. She's absolutely fabulous and a smokin hot librarian ;)
Shenkinators - Ali is such a great mommy to her two little boys Cole and Dean. Dean is another baby that has PWS (like Lillian). Ali has been such a blessing to me, Phil and Lillian. When things looked dark and scary, she shined a light on us with all the best information and contacts to help us on our journey.
Completely Eclipsed - Melissa has the ability to tell it like it is when it comes to being a mother. Every time I read her blog I find myself nodding my head in agreement and laughing. Plus, Isabella is just too cute. If you want to know the truth about mommyhood, read her blog!
Question #3 from Kristin - "I was wondering if yall were planning on having any more babies in the future."
We're still waiting on the results from a genetics test to see if Lillian's PWS was a random one time thing (meaning there's less than 1% chance it'll happen again), or if it was caused by some kind of funky gene imprinting "thing" (meaning there's a 50% chance it could happen again). If the test results come back next month saying it was random and it's not likely to happen again, we'll probably start trying for another baby very soon :). We want Lillian to have a sibling close in age, someone to challenge her, play with her, and love her. If it's the funky imprinting gene... well, we'll probably look into IVF and it'll be a while before we get into that because of the stress involved.
Question #4 from Megan - "I'm curious to know what you did or did not like about your pregnancy?"
I liked feeling Lillian's kicks and squirms. I liked my body. I liked that my cravings were healthy (most of the time) and I actually ate healthier when I was pregnant then before I got pregnant. I didn't like being so limited in activities (tennis, running, boating, scuba diving, etc), especially being pregnant in the summer. I didn't like the awful sinus infection I got for the majority of 1st tri, the flu that followed it, and the headaches from functioning on no caffeine. (All unmedicated) I really didn't like cancelling our cruise :(.
Question #5 from Laura - "How did you meet your husband?"
Phil and I met at our church. There are 3,000 members, so it's pretty awesome we even crossed paths! We met in a college bible study group and my ex-boyfriend introduced us! We started dating about 6 months later.
Question #6 from Ashley Ann - "What is your greatest wish for Lillian's and your family's future?"
My greatest wish for Lillian's future and our family is for a cure to end the hunger that people with PWS deal with every single day. If we could end their hunger, they could live independently and ultimately increase their over all happiness. All I want is for her to be happy.
Question #7 from Anonymous - "Did having a special needs baby change your relationship with your DH."
Absolutely. We realize we have to work harder on our relationship every.single.day. The divorce rate for couples that have special needs children is 80% and we are very aware of the higher level of stress that we're both dealing with. We've always been involved in a small group from our church of other younger married couples, and we're also involved in another group through our church that is meant to help build marriages. When one of us is upset about the future with Lillian, the other one usually stands strong and goes the extra step to make sure they can catch a break. We make sure to tell each other how we're feeling and compliment each other. I wish we had more date nights, but since Lillian needs to eat through a g-tube, we don't have anyone we can leave her with right now. When we are both feeling down at the same time, we see a counselor separately. I never imagined this as our future, but it's working and we're developing a stronger bond by just making it through the day.
Question #8 from Sarah - "What are your greatest joys and some of your greatest challenges of being a new mom?"
The greatest joy is seeing her develop. She has so much stacked against her but she takes every day like a champ. She pushes through therapy, sleep studies, bronchoscopies, blood draws, and everything else we challenge her with ALL the time. She's been through more in her short life than I have in my 26 years. I'm in awe of her strength and cheerfulness. I love to watch her soak in the world around her and try new things. The greatest challenge of being a new mom is putting aside my expectations. I never expected to have a child with a genetic syndrome. I never expected to fear for her future. I never expected my daughter to need so much help just lifting her arm or holding her head up. I never expected to feed her through a tube in her nose or a hole in her stomach. It's a challenge to not compare her to other babies her age. There are so many challenges to being a mom, and being Lillian's mom is a very rewarding challenge.
It's de-lurk week in the blog world, and you know you are dying to de-lurk and say hello :). All you have to do is introduce yourself, ask a question, and include your blog link (if you want to). In return I will answer any questions and maybe even throw in a video of Lillian doing something really adorable. How can you say no to that?
Over the weekend I'll answer all the questions in a separate post!
