Comments for The Life and Times of Stella

Comment on Merry Christmas and a Happy New Home by Kathleen

Kathleen — Sun, 15 Jan 2012 21:39:25 +0000

Home is where Mommy and Daddy are! Glad you’re turning the corner on the challenges of moving. I can’t imagine how hard it would be putting a sensitive child through that. Keep well!

Comment on Judgement Day for Stella’s Vision, Part 1: Ophthalmology’s View by Danielle Sparrow

Danielle Sparrow — Sat, 14 Jan 2012 16:04:11 +0000

I LOVE her little Lafonts. We swear by them. We have had a few pair already! I love the TamTams! I was always unsure of how they’d fit so we stuck with the Lafont pour les bebes. But they look perfect on your daughter!

Comment on Artist, and goggles, at work by Danielle Sparrow

Danielle Sparrow — Sat, 14 Jan 2012 16:01:56 +0000

Hello I am new to the group Little Four Eyes. Through there, I found your blog and I am happy I did! I am curious about this vision therapy. Can you tell me more?

Comment on Taking a stand against tube-feeding crimes and negligence by Helen Schubert

Helen Schubert — Thu, 12 Jan 2012 03:42:29 +0000

We had a mix of professional neglect in our family. My daughter was born with DS, and a number of holes in her heart, two of which were large enough to require eventual surgery. We did fine at home for a couple of weeks after she was born, and then one night she didn’t wake up to feed. The next morning it was like she couldn’t wake up to feed. We were admitted to the first hospital, and they placed an NG tube after about a day of not being able to get her to eat. They did some tests, and her pediatric cardiologist came in on day three to tell me he was sending us home–without the tube. “How is she going to eat!” I asked. He just walked out of the room, but the next thing I knew we were being transferred to another hospital across state. There she was reevaluated by peds cardiologists, who determined that we were seeing the beginnings of heart failure. An OT came in to help me with feeding, and we determined that since my daughter couldn’t latch on, I would continue pumping and we would add formula to up the calories. We were to use the NG tube for the time being, since she was burning more calories trying to eat than she was getting in, and the OT suggested I try different nipple types on her bottles until I found a shape and speed that my daughter was comfortable with. My Punkin had her NG tube in for three months. We could only get it down thru the left side of her nose, so it couldn’t be switched. She started yanking it out, so we had to put mitts on her hands. By the time we reached four months, and the goal weight for her heart surgery, she had developed a yeast infection on her cheek from the tapes that held down the tube. After her heart surgery, they switched the NG tube to the right side of her face and sent her home. We had no ‘plan’ for weaning, but were told we should get her on bottles as soon as she was ready. This was our first child, and I had never cared for an infant before in my life, what did I know about ready! Thankfully, once she had recovered from surgery we started regular OT therapy thru her intervention services. My daughter’s OT was my lifesaver! She helped me figure out when my Punkin was ready to bottle feed, and about a month after her surgery we were done with that evil tube!

Comment on How Stella went from the boob to the tube. by Jamie Pinkey

Jamie Pinkey — Wed, 11 Jan 2012 01:37:08 +0000

This is what I have been looking for for almost 4 months now! My daughter is going through the exact same thing and all we hear from doctors is this is so uncommon! I would love to be able to talk to u via email and get some help/advice from u! She has had the bg tube for 2 months and her refusal to eat has gotten worse!! I thought labor was hard, wow that was a peace of cake when it comes to feeding a baby who screams at the site of a bottle and then having to put the rest in a tube!!! I feel like I am on the verge of a nervous break down!

My email is eicuttie@gmail.com if u don’t mind contacting me I would love that! I need to hear from someone who has gone through this and what they did to help their baby!

Comment on Merry Christmas and a Happy New Home by Jenny

Jenny — Sun, 08 Jan 2012 03:19:17 +0000

No kidding! Topless ladies would seem to add to the value of your bathroom. I loved hearing about this and seeing the photo – thank you for the card!!! Wishing you all many years of happiness and comfort in your new place. Stella will love and learn form seeing it grow more wonderful over the years!

Comment on Tube Weaning by Laura

Laura — Wed, 04 Jan 2012 15:57:19 +0000

Hi Amber-
My son Jack was put on an NG tube at 3 weeks of age. He was sent by his regular pediatrician to the local children’s hospital because he was not taking large amounts of breast milk at each feeding (between 1-2 oz) during those first 3 weeks. At the hospital he was diagnosed as FTT and a video swallow study showed silent aspiration on breast milk. They immediately put him on an NG tube and said nothing by mouth for 1 month. During that month, we discovered that he also had silent reflux and he is now medicated for this as well. The NG tube helped him gain weight but I think the tube aggravates his reflux. At the end of the 2nd month, a repeat video swallow study showed that he can swallow thickened liquids safely (via an eyedropper at first and now the bottle), . He is now 3 mos old and is taking 2 of his 3 oz of fortified formula by mouth at 5 out of 7 feedings a day. Sometimes it takes him about 30 minutes to do it though and he sometimes sounds a bit wheezy. I am considering bringing up tube weaning to our care team (developmental pediatrician, speech therapist and regular pediatrician) because he has shown he can take the bottle and I think the NG tube aggravates his reflux and in general makes him more uncomfortable. I would love to hear your thoughts though.

Comment on Open wide by M Kaur

M Kaur — Wed, 04 Jan 2012 15:10:45 +0000

New feeding schedules are scary business, I am in the same predicament at the moment. Not sure when or what or how? But we are giving our son, anything he wants whenever he wants and at the moment its not quite enough but we’re not completely sure ourselves how much a 9 month old is supposed to eat. First child and all that…

Comment on Merry Christmas and a Happy New Home by Olga

Olga — Fri, 23 Dec 2011 04:24:33 +0000

aww, so sweet that girl.
and please don’t take down the topless ladies until we visit! promise!

Comment on Judgement Day for Stella’s Vision, Part 1: Ophthalmology’s View by Holly Ford

Holly Ford — Sat, 10 Dec 2011 16:39:09 +0000

Wow, I feel like I’ve met my long, lost twin. We have just entered into this Accommodative Esotropia and Amblyopia world 1 week ago and I feel emotionaly exhausted, ignorant, sorry for myself and my daughter, guilt, confused, and a bunch of OCD! I’ve been saying for a week that I want to be doing all that I can…exhaust all resources. I felt so lost and confused and then I found your blog, at 3:30 this morning…then couldn’t sleep. My mind hasn’t quit racing with your information. Finally, someone out there is expressing the EXACT way I’m feeling and I don’t feel so alone. I’ve taken notes and looked at your links. I have to make myself leave the computer to do the normal daily activities. My name is Holly, my daughter is Asyria (3.5 years old) and I hope that over the next few months I don’t get on your nerves! Thank you so much for sharing your story, your personality, and your already tried methods and outcomes…looking so forward to digging in even more, but I have to get off of here and at least brush my teeth!