8 Months/Aryanna's Upper GI Results

8 months!  (Back on January 25th - better late than never, right?!)

This month Aryanna has joined Anthony in the rolling club.  Anthony can go from tummy to back and from back to tummy, but so far Aryanna has just mastered tummy to back.  She's oh so close to going from back to tummy though.  She also sat up by herself for about 10 seconds by herself for PT yesterday!  They both love to grab their feet and put their socks/feet in their mouth.  (PT actually works on them putting their toes in their mouth!  It helps develop their ab muscles I guess!)  They've started "talking" to each other and giggling together - cutest thing ever - see the video below.  And in true twin fashion, they both got their first tooth on the same day a couple of days ago.

We took them to the NICU developmental follow-up clinic at Mercy on Monday.  We just love the nurse practitioner who does the clinic.  She always has great suggestions for helping them with their development and she really takes the time to listen to our concerns.  We spent a great deal of time taking about the twins' feedings and she actually listened to what we were telling her and agreed that eating should be a happy time - so refreshing!  Once we cover all our bases physically with Aryanna's feedings she suggested a feeding clinic in Johnston for both babies.  It sounds like they might have some suggestions on the oral aversion side of things. Overall they're doing really well developmentally.  Jose and I have noticed that Anthony doesn't use his right hand nearly as much as his left and just has to work a lot harder to use it.  He's still pretty little so it could just be that he prefers his left hand, but it could also be a result of his brain bleed.  We're going to ask our pediatrician about maybe seeing a neurologist when we go to their 9 month appointment next Monday, but we also pointed it out to the nurse practitioner.  She agreed that he has a harder time using his right hand and that it would be a good idea to have a neurologist on board as he continues to develop.  Keep praying for that as well.

Aryanna had her upper GI yesterday.  She was supposed to drink this liquid (like barium but for kiddos) while they took x-rays to make sure everything looked okay with her stomach.  I was skeptical going into it because she won't even drink her formula let alone that nasty stuff.  So when it came time for the test she of course wanted nothing to do with it.  They decided to use an ng tube (a small feeding tube through her nose) to get the 10 mls of liquid in her tummy that they needed.  I had seen them put an ng tube in while she was in the NICU, but this was a whole different experience with an 8 month old baby.  It took them 3 tries with lots of crying and gagging to get it in place, but they were able to get the test done and the good news is, her stomach is doing what it should and is in the right place.  The doctor who did the test was super nice and understanding.  He said he knows that the GIs all say that they'll grow out of the reflux stuff by a year or so, but that's a long time to wait when your baby puts up a battle every feeding.  I so appreciated his compassion for the situation we're in.

On a positive note, Aryanna's feedings have gone quite well today (we can only attribute that to all the prayers - thank you!)  We also found a sippy cup today that Anthony likes!  He only took about an ounce because he doesn't have it 100% figured out yet, but he pulled the cup to his mouth because he wanted more!!!  He NEVER does that with the bottle.  I'm really hopeful we can just get him transitioned over to the sippy cup.

Here are our little cuties at 8 + months!

 Haha Daddy!  You're so funny!

 Yum - toes!

Happy girl!

I have spiky hair, just like Daddy.

Everything goes in the mouth these days.

"Don't leave me Aryanna!"

Yup, they love each other!

Sure wish we knew what they were saying - so cute!

GI - Round 2

Things have been crazy around here and I never got around to updating the blog regarding all of Anthony's tests.  Everything came back normal.  The doctor didn't see anything alarming during the endoscopy, and his biopsies and pH monitor were fine as well.  So no allergic condition and no reflux.  We're grateful that he doesn't have any major problems, but it's frustrating to not have any answers.  So we just continue to plug along and do the best we can.  Sometimes he eats fine, but many times he puts up a fight when it's time to eat.  He does awesome with cereal and baby food, so here's to hoping he outgrows all of this eventually.
The title of this post is GI - Round 2, because Aryanna, not wanting to be left out, has decided to join the put-up-a-fight-to-eat club too.  For about the past month she has started vomiting (of the projectile, through the nose, massive amount, freak out variety) more again.  It has been at least once every day or every other day.  Sometimes she just spits up a little and it doesn't bother her, but when it's a big one she is totally traumatized.  About a month ago she started freaking out whenever it was time to eat.  We made a couple of adjustments that helped some, but the last couple of times the nurse has come (she comes every 2 weeks) she has only gained an ounce or two over a 2 week period (they're supposed to gain half an ounce a day).  So we decided it was time to get her into the GI as well.  We decided to go to a different doctor since we weren't thrilled with Anthony's GI's bedside manner ("His oral aversion doesn't seem that bad.  He will suck my finger." "Uh, glad it's not horrible, but I'm pretty sure he can't drink any milk from your finger.")  So Friday we took Aryanna to her GI and he gave us what I think will be some good solutions, but we also weren't impressed with his bedside manner.  He doubled her dose of Prilosec and apparently Prilosec doesn't work with spit-up formula so we're trying just 26 calorie Neosure now.  Really wish our pediatrician would have caught that one when she prescribed it.  Anyway, hopefully the increased dosage will help.  He also ordered an upper GI study for this Tuesday to make sure her stomach is in the right place - apparently that can cause vomiting as well.  So hopefully we have some solutions for her, but we left disappointed with how we were treated again.  We tell the doctors how much they eat in a day, and they say "Oh, that's decent.  Not wonderful, but not awful either - no big deal." What they don't realize is the battles we go through to get them to eat at all.  We tell them about the crying, batting the bottle, refusing to eat but it just feels like it's all about the numbers for them.  If they're not losing weight then it's fine.  The same goes for the vomiting.  Aryanna's doctor told us "All babies spit up."  I know that.  When she spits up it's not a big deal, when she vomits up an entire feeding almost every day and totally freaks out, that's a bigger deal.  He basically told us the only way he would believe that it's a lot is if we catch her vomit in a towel and weigh it (seriously?!) or if she vomits after every feeding.  (Again, we explained we do a lot of things to prevent her from vomiting - holding her upright after her feedings and never laying her flat until it's been at least 3 hours since she ate.  I can about guarantee she would vomit after every feeding if we didn't take those precautions).  I understand that after we rule out any bigger issues there may not be a lot they can do for the reflux besides upping her dosage or trying a different med, but having our concerns heard and at least being treated like a parent that knows their child would be nice.
So, as you can tell, we're frustrated, we're tired and we hate seeing our kiddos go through this.  Through this lenten season we're praying for complete healing for Anthony and Aryanna and their feeding issues - would you join us in that prayer as well?