Tuesday, January 26, 2010

More (not so good) Jilly News

We had our 6 month check up for the girls yesterday.

Lucy has gained almost 3 pounds in 2 months and weighs 14 lb. 11 oz.

Jill, on the other hand, didn't gain a single ounce.

Not one.

She weighs exactly the same 2 months later at 10 lb. 7 oz.

My six month old baby only weighs 10 pounds.

She grew 2 inches...but didn't gain any weight.

Our first experiment is to supplement with formula after every feeding...it obviously isn't a milk supply issue (since I have LuLu's rolls to attest for that!)...but it *might* be that Jill gets tired and quits nursing too early...

Since it's easier to suck from a bottle than it is from mama, I have to see if she will take formula after a regular nursing session.

We go back in 21 days for a weight check to see if that was the issue.

In the meantime, we are being referred back to the neurologist...when I asked why, this was the response:

"Lots of babies don't get referred to the neurologist because they look so bad that you can tell from just looking at them that they will have long term issues...and then some babies are doing so well that you can tell from just looking at them that they won't have issues...but Jill is in this gray area...she's made remarkable progress since she was first born...but she's still struggling, so the neurologist might be able to see some predictor indicators for Cerebral Palsy...and at least give us an idea of what we might be dealing with in the future..."

There were those words again.

I focused my attention on a door hinge.

It's all that kept me from bursting out into a hot mess of tears.

This morning was our first bottle feeding.

She didn't drink any of the formula...but then again, she had no idea how to suck from the bottle nipple...and when she did manage to get some formula out accidentally...her eyes watered and she pretty much gagged...apparently formula isn't so yummy...

So we will keep trying. I hope she gains some weight.

I just wish I knew what it was like to go to a standard well-baby check up and not hear the words cardiologist or neurologist...

It makes me tired.

12 comments:

Kristen Borland said...

Oh Jeannett, i'll pray for little Jilly. i so want you to experience a routine well check appointment!! Just remember God's got it all figured out... and we can pray He will give answers to the doctors and most of all comfort and peace to you and Andy.

Joanie said...

Still so sorry, Jeannett. This has been a bummer week for you and your family. I keep thinking of Jilly's amazing eyes, and I know God's got a plan for her.

Leah said...

I will pray for Jilly and your family. She is so beautiful and special. God knows what's going on and he will help you with the answers. Keep praying and holding on to God's hand.

Kate said...

Jeannett jeannett jeannett. Jill is in our praying jar and we will keep praying for her and you and andy. Hang in there. I'm sorry you have to go through this. I wish I could run over and give you a hug and cry with you. Who knows what God has in store... we're praying.

Jacquelyn said...

Wow! that is discouraging news. Is she on a special formula? Is that why they aren't asking you to pump and bottle feed her with breast milk? I'm so sorry! We'll be praying.

jenny said...

Poor Jill. And poor you! I understand how exhausting news like that can be. My Bella also gained weight REAALY slowly. Often she was the same weight between checkups. So maybe that's just her genetic makeup? I'll be praying...

Brianna Heldt said...

Oh Jeannett I'm sorry!! I'll be praying. Hopefully the neurologist can at least give some answers so there's less wondering and worrying.

Love you guys!

Penny Malley said...

Praying for Jill and praying for YOU.

Jeannett Gibson said...

Jacquelyn- the formula is the regular kind...not high calorie. I could pump, but I fear that trying to squeeze a pumping session in between nursing twins, bottle feeding Jill and chasing a 2 year old will only result in stressing me out...and subsequently REDUCING my output...and messing things up for Lucy too. (At one point with Henry when I worked, I would set my alarm for 3 a.m. to pump...but the whole thing ended up making me sleep deprived and worn out and I ended up getting less volume...) Long story short, I don't want to overdo it...

Lillian said...

I've been in your shoes with the baby who isn't growing like she should. What they had me do was using a special syringe with a small tube attached I would fill that up with formula, and while I was breastfeeding I inserted the tube into the side of my babys mouth. So baby would be nursing but she'd also be drinking the extra calories from the formula at the same time. It may be also a better flavor for her then just that yucky formula alone. Just thought I'd share that with you so perhaps you can go that route if the bottle feeding isn't going as planned.

And I wrote a longer post yesterday but it got lost. So let me just say now that your little Jill is going to shine no matter what because she has you to help guide her, nurture her, teach her, and most importantly love her. These times are tough, the not knowing is terrible, but one way or another that little Jill is going to do great things. I have no doubt about that.

Peggy said...

Oh Jeannett--really don't have words to say. My heart is breaking for all of you. I do know that God has His plan for Jilly and He loves her so. You are just along for the ride..hold on and pray...as I know you do.

Love you all,
Peg

Sew Mother Like Daughter said...

Jeannett - I know that waiting and not knowing are some of the hardest trials we have to experience, but if I can offer some small consolation (in addition to my prayers and best wishes for you and your family!), just know that "cerebral palsy" is a hugely vague diagnosis that, in itself, doesn't MEAN anything! It's just a cover term for a conglomeration of POSSIBLE symptoms. My brother has cerebral palsy, and you would NEVER know it - his quality of life, intelligence, and physical abilities are all intact. And, of course, there is the VERY LIKELY possibility that Jill is COMPLETELY healthy. All my best wishes for you and little Jill! You both will shine!!