April 2011 – Chunky Monkey

Sportin' my little black dress onsie

No call on the liver transplant, but we wanted to share some good news! Lil’ Sophie is days away from being 15 months old and she has officially crossed the threshold of 11lbs! This is HUGE for our ‘failing to thrive’ little girlie!  She now weighs 11lbs 8 oz. Since last week she has gained 9oz. We’ve noticed that her thighs look thicker and people have told us that her face looks like it’s filling out. We are sooo thankful to God that the TPN is finally working!

Sophie is now on 24hr TPN treatments. This means she has a little pump that slowly pushes vitamins and nutrients directly into her bloodstream. It’s battery powered and each night we prepare her new bag of nutrients, prime the pump, flush her line, and reconnect her for the next 24 hours. She still takes her bottles, but since the TPN provides approx 90% of her daily nutrients, there is less pressure to make sure she takes in every little drop making her bottles more of a treat.
Life is a little different with the Broviac line (besides caring around a pump 24/7), for example naps/night times can be challenging as she’s finally built up enough strength to roll around in her crib. Yay! But now she is regularly twisting herself up in her plastic tubing. At times we witness her swinging it around like a monkey tail!
Also, the Broviac line can not be submerged. This means no swimming and no baths. Yes, that’s right… no baths! There are some techniques I’ve learned using plastic wrap to try and keep the line from getting wet/infected but they have ended in screaming and not worth the frustration. We long for the day she can sit her little bottom in a nice warm bubbly bath! In the meantime, I’ve gotten pretty good at the art of sponge bathing.

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For those who’ve found Sophie’s blog because your curious about TPN and Broviac lines, I’ve included some thumbnails for you below. When I found out Sophie was going to have this surgery, I scoured the internet to find others experiences and pics to prepare myself. So I’m including images I would have wanted to see. This TPN site  is a good reference because it includes a checklist that helps breakdown the routine of preparing the TPN. However, you’ll learn everything you need to take care of the Broviac line and TPN from your nurse. Hope this helps relieve some of your fears. After you’ve had the proper training it’s really quite manageable. I’m not a medical expert, but if you have any questions feel free to post them. I’ll gladly share what I’ve learned through my own experience.

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~ by Jenny Bagwill on May 1, 2011.

7 Responses to “April 2011 – Chunky Monkey”

  1. She is getting cuter by the day.I am so happy that the TPN is working for her and she is gaining weight.Keep up the good work Sophie.!!!

  2. She is getting so big and so darn cute. Hope has the same onesie…so cute! I am glad you posted the pictures. For parents that have never seen it or knew about feeding our little ones it is helpful. Hope is 19 months and still weighs 16 pounds. I am trying tirelessly to pack on the weight. We are hopeful that she will not need to get another feeding tube.

  3. She’s the most gorgeous thing. I love her little onesie and her big smiles. Yay for getting chubby and for rolling over. 🙂

  4. Hello, I am sorry, but I did not catch your name when I met you at Michael’s today. Your baby girl is so cute and has really been on my mind since I saw her. I am keeping her and the family in my prayers and I pray that she continues to grow healthy and happy. 🙂

    • Thanks for taking the time to chat with me today. I was very encouraged by you. I appreciate your willingness to share your own story with me. I never know when I may cross paths with some holding the ‘key’ to figuring out what’s happened to Sophie. You are incredibly sweet and inspiring. We’ll have to stop by and visit you again!

      • Hello again, I am so happy that I was able to encourage you in some way… that makes me very happy to hear. I spoke with one of my managers and was wondering if you would be open to the idea…. I would like to set up a donation can at the front of the store at Michael’s. It could be for either medical expenses, something that Sophie would want through out time or whether it’s to help the family. Please let me know if you are comfortable with this or not. Sophie has been on my mind and I just hope for the best for her and the family.

        Thank You,

        Vicki Bailey 🙂

      • Hey Vicki,
        I sent you a personal email about this. Your too sweet!! Hope to see you again.

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