Monday, May 12, 2008

"Vegetables are a must on a diet. I suggest carrot cake, zucchini bread, and pumpkin pie." Jim Davis

Ha, I LOVE IT! I had to start out this post with a humorous quote. I got a kick out of this one! Of course, you probably guessed the topic based on the quote and that is EATING! Oh boy, our roller coaster continues. I don't know if it ever gets better for us micro-preemie moms. There isn't a ton of research yet on these babies as they grow older as it has only been in the past 10 years they have started saving these little ones so I have no idea if this will ever clear up with age. I can only pray and hope for miracles every day.

I feel like I can't really complain as the boys are still young and not even in the toddler years yet but it doesn't make things easier. I try so hard to not get anxious when reading the stories of other micro-preemie moms on my Yahoo! group who are having feeding problems well into the second, third years. Many moms can't even get their babies to eat solids and survive on high calorie milk/formula, yogurt, etc.

I was pretty disappointed this past Thursday when we weighed the boys at the doctor's office to discover they really hadn't gained weight in the past couple of weeks.I keep praying Noah and Jonah will wake up one day and realize they need to EAT! We aren't there yet. It is still a fight to get 50 cc's down them every three hours (that is a bit over 1.5 ounces). Yes, in a day they are averaging about 14-16 ounces. If they eat more then that I breathe a sigh of relief with a sense of impending dread as I know the next day they probably will eat worse because they ate so much the day prior. I've contemplated feeding every two hours but it is a doubtful cause.

Sound like fun yet? =) I'm not looking for sympathy really, just understanding. I think people often make the terrible mistake of thinking that since your baby is home from the hospital all is well and they are doing marvelously and the horrible part is behind you. Unfortunately some of the worst battles happen at home.

I did call down to Fresno today and left a message for the occupational therapist that worked months with the boys in the NICU. I asked that she call me back about enrolling the boys in a feeding clinic. Sadly, there aren't any in Bakersfield so that means another 4-hour round trip for me to Fresno if they start the clinical therapy. Has anyone seen any great jobs for Shane down that way yet? Ha ha ha!

Neither Jonah nor Noah have grown, length wise, that much since coming home from the hospital (Jonah: March 17th; Noah: April 7th). Both have put on a bit over 1 pound since coming home but now I feel like we are stuck in a ditch.

I had several days in a row a few weeks ago where at least one would eat more like 17-18 ounces a day and then suddenly both settled on eating the 14-16 ounces a day (50 cc's, sometimes more, every 3 hours). Jonah has generally been my better feeder but lately he screams at me and trying to get food down him sometimes is really tricky. Like I've said in my previous postings, he has taken to sucking on his hand and generally prefers that to his bottle.

I just want to get a hold on this before doctors start talking about g-tubes (feeding tubes) because they aren't gaining enough weight. I've said it once and I will say it again, they will NOT get feeding tubes. I will do everything I can and then some to assure that they don't end up with that happening. I have always felt that feeding tubes are just a delay to the actual problem as soon as you remove a feeding tube you battle feeding all over again. Now what is the use of that?? Why not tackle the problem first instead of pushing it off for a couple of years? I am sure my theory isn't perfect but as a Mother I want to tackle the problem first and not later.

Life continues on for us. I'm hoping Jonah will start his eye therapy in the next week or two (another thing I need to follow up with). Speaking of Jonah, he had another "choking" episode last Thursday, conveniently right as we were heading to the pediatrician's office. Thank goodness this time it wasn't "as bad." He did struggle with catching his breath but continued to off and on cry and I immediately got him to the floor, suctioned his nose/mouth and whacked him, face down, resting on my forearm, a good few times until he recovered. This time I had my wits about me a bit better, poor Shane just stood there in shock (he wasn't here the last time that Jonah spit up, choked and stopped breathing). Then to improve the situation Shane backed our brand new RAV-4 into our Corolla. Nice day. =) Good thing we were able to buff most of the mess out of the Corolla at the dealership and they recommended a paint shop that won't charge us an arm and a leg to repaint the bumper of our RAV. That is our silver lining as I was sure we'd have to repaint both cars.

These boys are adorable and such a joy, it makes you want to be the best you can in all you do. It's also hard to not live every day wishing they could have had an easier start and searching for ways to even the playing field, although I'm not sure we'll ever be able to give them what they should have had.

Thank you everyone for your love and support. We'll keep you posted regarding the ongoing eating saga.

All our best, Shane and Michelle

3 comments:

John & Kelly said...

Hi Michelle,

I found your blog through the yahoo group - haven't figured out much how to use it yet. anyway I am the mom of a 23 and 4/7 weeker - he was 1 lb 3 oz. I was feeling frustrated today and wanted to vent - not for sympathy but understanding. so when I found your blog and read that - I was so comforted and I felt understood. I would love to email you. my email is kellysherrill@mac.com. Our story is at www.prayforkyle.com. Thanks Michelle for your honesty!

Kelly

liz.mccarthy said...

Hi Michelle, My only $.02 on feeding tubes is that I wanted my daughter to have healthy nutrition and she wasn't eating anything by nipple, I know it was the best decision I could have made and would do it over again, as she's been very healthy and outgrew her lung issues. We were able to give her super nutritious blended food (not formula once she finished breast milk) through her tube, she probably get fed better than many healthy toddlers out there. Hopefully you can battle the feeding beast and you won't have to go the route of a tube, BUT don't wait 2 years if they are not growing. My best, (and I understand your frustration!)

Liz M (Preemie Blog Moms Founder)

heidi said...

i'm sorry about the eating, i was wondering how that was going. i wish i could help

i understand you take on wanting to hold off on the feeding tubes, i'm sure i'd be the same way. i have a very similar point of view on situations like that