Comments for The Life and Times of Stella

Comment on About Us by amberhj

amberhj — Mon, 21 May 2012 03:48:13 +0000

Kate, thank you for your comment. So now Ruby is 9 months old. How are things today? I’ve heard many stories very similar to your Ruby’s–kids who’ve gone on to eat 100% orally and I wish the same for you. I share your frustration about the lack of knowledge and support regarding tube weaning in this (and many other) countries! Please update me if you can. I truly hope you’ve found the help you need and deserve.

Comment on About Us by amberhj

amberhj — Mon, 21 May 2012 03:45:09 +0000

Your comment was so very powerful and I think of you regularly. How are you and Annabel doing? You seem like an amazing and super devoted mom. You have been through so much. I wish you and your sweet girl the very best, and if you’re feeling isolated, let me know if you want to grab coffee sometime.

Comment on Tube weaning stories by amberhj

amberhj — Mon, 21 May 2012 03:42:17 +0000

Hi Sarah, have you tried the ning group, Tube Fed Kids Deserve to Eat? It can be chaotic over there, but there are so many helpful and knowledgeable moms who’ve been through it all, including moms of babies with heart issues. Good luck!

Comment on Tube weaning stories by Sarah Gillespie

Sarah Gillespie — Mon, 23 Apr 2012 18:48:21 +0000

Hi, I would also love any information with success of weaning with babies that have heart issues. I’m putting together some information to share with my son’s doctors to get their consent on trying a program.

Comment on About Us by victoriakramer

victoriakramer — Thu, 12 Apr 2012 05:26:28 +0000

Amber,
I am in tears after reading your tube weaning posts! My little Annabel has been Ng tube fed for the past three months ( she is almost 1 year old). She has neuroblastoma cancer and no longer wants to eat since going through chemo.
Everyone thinks I’m nuts for being so worried about her not eating, but as you know it’s heartbreaking to watch your baby not want to eat. I have been doing a lot of tube weaning research, because I am eager to get her off the tube once we are done with the cancer treatment. I have been happy to find success stories from families going to Seattle Children’s (we live in Kirkland).
I swear I could have written some if your posts! Annabel has always been a poor eater due to reflux and milk protein issues. At three months old I switched from breast to Alimentum. I had to give up 15 GALLONS of breast milk I had pumped for her. I have always read into our pediatrician visits regarding weight, as A has never been on the growth chart. So, it was no surprise to me that A no longer gained weight and stopped eating during chemo.
I just want to thank you so much for posting everything you guys went through. I just can’t tell you enough how much I can relate to you. I got to the point with her eating that I had terrible anxiety that I almost couldn’t function. I certainly have a love/hate with the Ng tube, but I know with hard work we will get through this difficult time.
Thank you!

Comment on About Us by Kate

Kate — Sat, 24 Mar 2012 00:36:47 +0000

Hi at last people who understand! i had our beautifull daughter ruby in august 2011, normal delivery, great labour. after 11 hours of not wanting to feed they ran some tests to cut a long story short we were flown to starship hospital in auckland and ruby was diadnosed with Aortic stenosis hyperplastic left heart syndrome and had her first open heart surgery at five days old, between this opp and the next to be done at three months she would feed off me for several minutes then get to tired i would top up with ng tube then we would concentrate on top ups full or half? i got so upset not knowing how much to offer her i would express then give iot via bottle then i knew that she had her reccommended dose what she left in the bottle i would put down her ng tube, but between her norwood procedure the first opp and the bidirectional glen the second she had blood in her stools, they said she was allergic to my milk and like you stacey i had alot of breast milk that i worked so hard for in the bin. ruby went on formula and at the same time her health worsened needing to go on one litre of oxygen, at this stage she stopped taking anything orally, she would have these choking episodes and turn blue i would have to press the asssist button and they would suction ruby and shove more oxygen in her face, it was so traumatic to watch and every time it happened i wondered is she going to make it through, she did and after four and a half months in starship hospital we are home.
Ruby is nearly 7 months old still nasal gastric feed every 3 hours for 50 minutes i just dont understand why we dont have people in our own country more willing and able to get these children to feed orally, but i dont feel so alone now reading your stories, i am seriously considering the graz clinic in Austria, although very expensive i just want to give it a shot.

Kate and Ruby

Comment on Perilous Play by Olga

Olga — Sun, 11 Mar 2012 05:02:11 +0000

funny, my parents were just reminiscing tonight how their childhood schoolyard games involved penknives (balancing them on your hand and then flipping them so they landed point-first in the dirt). ha ha! can you imagine what would happen today? here come the cops and the social workers and the EMTs. different times, my friend.

Comment on Perilous Play by mandy

mandy — Mon, 05 Mar 2012 20:14:14 +0000

Love it!!! And thanks for the reminder : )

Comment on Tube weaning stories by haileyfrancis

haileyfrancis — Sat, 25 Feb 2012 17:14:19 +0000

Dear Amber,
I have been inspired by your blog. And so grateful! My Hailey was born at 30 weeks. she ended up having a severe ecoli infection in her lungs and blood , that was resistant to many of the popular antibiotics, making her stay on the ventilator for over three weeks and having 20 blood transfusions. The doctors really didn’t think she would make it. But through God’s grace she made a great full recovery. However, when it came time to start trying the bottle she had a hard time. Our NICU was against sending parents home with babies on NG tubes. I tried so hard to not do the surgery. We were pushed into the Gtube and fundo/Nissen when she was 3 months (1 month corrected.) Even though she was taking 80% of her bottles, it wasn’t enough for them. Since the surgery she will take the same 30-50ml every bottle feed during the day. We have never found a reason why she won’t eat medically. she will suck on pacifier and putt EVERYTHING else in her mouth. The thing is, she if fed continuously 70% of her “goal” feed at night over 9 hours.
Because of your blog and a few others you listed, and my contacts with other moms through babycenter message board; we have decided to do a hunger based wean through the netcoaching with Graz, Austria medical team. I wanted to thank you for your blog because it helped us convince our pediatrician, and other family members, that this is the right thing to do for Hailey Francis. Our pediatrician is on board and thinks it is a good idea!!! I presented your blog as well as other resources from my many months of researching. I was so surprised when he said he would support us, because we come from an area that isn’t well developed in this type of medical breakthrough, and really doesn’t care how Hailey gets her nutrician as long as she gets it.
I started a blog when we were in the NICU, and plan to share our tube and weaning story for others as well. I was hoping to referrence to your site on there if it is ok with you?
http://www.haileyfrancis.wordpress.com
Thank you,
Chanci

Comment on How vision therapy is saving Stella’s toes, and then some. by Becky

Becky — Sat, 25 Feb 2012 12:41:02 +0000

Thank you for sharing Stella’s achievements! I couldn’t even get through this post without tears of relief, happiness, regret, anticipation – a whole flood of emotions hitting me at at once. My 7 year old daughter’s vision problems have just been discovered and we are eagerly awaiting her prisms to return from the lab.

Your account of the first visit to Dr. T’s office was so amazingly like our initial visit to our developmental optometrist. My daughter struggles with speech. Dr. Collier asked her to repeat the tongue twister “purple hippopotumus” and she stammered and struggled through the pronunciation. He put the yoked prism googles on her and she spoke with the most precise clarity I have ever heard come from her mouth!

Kathryn also shares a reserved nature in all of her interactions. It takes her a couple hours to become comfortable at parties or crowded places. I recall her terror at our first visit to Disney World and now understand it. I, too, have always been her anchor. Always beside her to hold her and accept her discomfort. At least I was that. I just wish I knew of the help she needed earlier in her life. But she is getting it now and that’s all that matters!