14-15 weeks

I keep avoiding new blog entries because progress has seemed to slow down the past couple of weeks. Not the super happy positive news I like to share, but reality...

Lillian had an appointment last week with her Developmental Pediatrician. She was scheduled for a swallow study, but they canceled it when we told them we were already feeding Lillian more through the bottle and that I had widened the nipple. Since she doesn't appear to be aspirating, and hasn't had a chest cold or any signs of aspiration, they just said continue doing what we're doing.

One thing they did schedule was an upper GI in preperation for a G-tube. We have an appointment with a surgeon in 3 weeks to talk about the installation process, and hopefully schedule the procedure. While Lillian is eating more from her bottle, it's just not enough. It takes her nearly an hour to eat an ounce, and that's on a good day. The past two days she has really been a challenge to feed. Hardly sucking and spitting out what she does suck. I'm literally in tears typing this because it feels like no matter how much time we spend trying to eat, she just doesn't want to. I don't like the thought of force feeding my child. How crazy is it that I want her to eat now, and some time down the road I'm going to be regulating how much she eats.

Speaking of regulating how much she eats, poor little Lillian is already on a diet. Her dietician cut back her bottle by 5 mls (not much, I know) but I didn't think she would be on such a strict diet so soon. At least she doesn't care since she hardly has an appetite. So now she gets 115 mls 7 times a day.

I feel like this week she has just completely declined in her abilities. Last week she could hold her head up and she was taking her bottle better. She was batting at her toys and starting to make more noises "talking". This week she just lets her head roll all over. She wont hold it up. She wont take her bottle. When I lay her down to play with her toys, she hardly even tries. She isn't talking much either. I'm really hoping she's just worn out from the holidays and once she gets back on schedule she will surprise us and start to do better again, but I'm starting to wonder how realistic that is. I just need some kind of indication that she's still functioning. Fuck.


  1. I'm sorry. Maybe it is a 2-steps-forward, 1-step-back thing. You are a wonderful mother for seeing her through all this. Just keep on keeping on, you know?

  2. I'm sorry Sare. You never know it could be the holidays that have her completely tuckered out. Thomas wasn't interested in his toys that much after all the commotion.
    Lillian will be in my thoughts as always. And my fingers are crossed she feeds better soon.
    You are an amazing mom ((hugs))

  3. Oh Sarah, I'm so sorry to read this. I hope she is just worn out from the holidays - I know all the commotion has completely changed Luke's routine. I'm sorry she needs a G-tube - how long do they anticipate her needing it? I hope things get better for you. You are doing a fantastic job! ((hugs))

  4. You don't know me. But I ready your blog whenever you have time to update. And, I instantly pray for you and your family. I can't imagine how hard this has been on all of you. I tear up every time I read your entries and I just had to finally comment. Personally, I can't imagine what you are going through, but I do have two cousins that have mental disorders, etc. and I have watched their own parents with them. I know things will be hard but I also know that both my aunts and uncles both say they have found their greatest joy in their children. And, that in many ways, it was a blessing. Perhaps God has chosen you because he knows how amazing you and your husband are. How great you will be to little Lillian and how much love you will shower her with. There is no doubt in my mind that there is a special place in heaven reserved for all of you - some day far far away. You are doing His work and caring for one of His angels. I can only imagine how difficult things will be later in life, but somehow, someway, find it within yourself to reflect on the positive at the end of the day. I am constantly praying for you. Just keep showering her with love, demanding excellence from her doctors, researching all the best ways to help her and supporting her with everything you have. That's all you can do. And, God is watching over you....you have one of his angels.

  5. I'm so sorry, Sare. I wish I had wise words, but the only really good thing I can think of is that she has such a loving, kickass mom. She has her good times and bad, but she *always* has you. *hugs*

  6. I just said a prayer that your precious Lillian continues to improve her abilities. She really might just be worn out and off schedule from the holidays. You are the best Mama for being there for her, helping her learn and grow, and always loving her. You are doing a great job Sare.



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