Friday, October 31, 2008

GI Clinic

The GI clinic had a cancellation on Wednesday so I took Gracie in for a consultation. I mostly talked to the nurse and she asked all about Gracie and her history. The nurse left and went to talk to Dr. Jackson and they both came back in. They agreed that her relux medication doses were too low and almost tripled some of them. They want me to try that first and see how she does. If she does not improve then we will try different formulas. (By the way, Gracie cried the ENTIRE 2 hours that I was in the clinic--good times!) So now she is on the following doses of reflux meds:

Zantac .7ml 3 times a day
Reglan .6m. 4 times a day
Prevacid 3.1 ml once a day

So far, it has not made a difference. About 3 weeks ago, I started having to give Gracie half of her food for the day in formula because I was running out of my milk. For the last 1 1/2 weeks or so we have had to give her about 80% of her day's milk in formula. I think this may be the problem. I don't think she is agreeing with all that Pregestimil. I have about 4 bags of milk left in my freezer and I am experimenting today with all fortified freezer milk to see if it makes any difference. I am a little sad that I am not providing her enough milk anymore, but I figure pumping for 7 1/2 months is pretty good.

Gracie is still quite fussy. She has a fairly good day once and a while but on the whole, she is a bit of a crabby patty. We all say that we would be too if we had her life!! So we make sure to enjoy the good times and the bad times with her and to try and just be grateful that we are all home as a family together.

Since my last post we have discovered a few new things that Gracie likes. When she is fussy, I can just dance around with her to ABBA's greatest hits--yep, that's right, ABBA (I love them and I loved the movie Mama Mia!!) and she quiets right down and sometimes falls asleep.....pretty funny!! When you give her her lip gloss she absolutely goes crazy like she is a drug addict trying to eat it. So my friend had the idea to twist it all the way down and let her just put it in her mouth and lick it.....another one of her favorite past times. Also lately, she has acted like she is thirsty so we give her water through a syringe and she drinks it.....it is pretty cute. However, if you try to put some formula or PediaSure in there, she does not like it, so I am trying to think of what I can do to get something with calories in there that she likes.

I will post some Halloween pictures of her soon!! (Gracie's FIRST Halloween!!)

Happy Halloween everybody!!

14 comments:

Andy and Jodi said...

My name is Jodi Wimmer and I found your blog through Keri Watts. I went to highschool with her. I hope that you don't mind me commenting on your blog. I had a daughter with Down Syndrome back in January. She had a couple of heart anomolies where she had to have open heart surgery back in July. She then had some complications from the surgery and we spent all of August at Primarys. I read your blog and can empathize with you. She also qualifies for Synagis and we also pay for this expensive shot. I remember pumping and fortifying my milk. I was able to pump up until she had her first surgery, but then I couldn't keep up with her either. If you ever just want to call to talk or even vent, I will understand.
A Fellow mom with a special child:
Jodi Wimmer
801 368-9370
adawimmer.blogspot.com

Brooke said...

Oh I cannot wait to see her halloween pics! So sorry she is unhappy. Hope the meds help soon.

The Ridgway Family said...

You should be very proud of yourself Michelle for pumping for 7 1/2 months. I know it is so difficult. I hope you can get Gracie's formula issues figured out and Happy Halloween!

Keisa

Leslie said...

I've been thinking about her ever since Wednesday wondering how her appt. went. Sounds like just more trial and error. Sorry you weren't able to get more concrete answers. I'll keep praying that her tummy is able to hold down her food soon. Poor baby...such yucky stuff.

Christina said...

I hope you are able to figure it out between the medicines and playing with formula types. I love that she loves lip gloss! What a cute girl.

Happy Halloween!
Hugs & Prayers,
Christina
Jacob's momma

Kimmie said...

Being a fellow HLHS mom...you are #1 on my list lady! Pumping for 7 1/2 months...WOW...my hat goes off to you. The minute I found out what we were in for after our son was born (we didn't know until 15 hrs. after he was born) I said FORGET IT! So you are amazing to have lasted this long with everything that has happened!

Brian and Kristin Barlow said...

You must buy yummy lip gloss!! I can't wait to see Halloween pictures! I hope this reflux thing is able to figure itself out!! XOXO

Summer said...

Michelle, so glad to hear surgery will be after the holidays. We spent the holidays in the PICU last year and it was so tough on the family. Hopefully the new med doses will help Gracie feel better. And Gracie was included in our family's fast today.I Know this is an odd offer, but hey all us heart mom's are in this hard situation together and just want to help each other, I have a lot of frozen milk that Mason will never use before it expires. Let me know if you are innterested please!

Hugs of love, Summer and Mason

likeschocolate said...

Maybe, yogurt thinned down. It is sweet and has more calories. Good Luck! I am sorry you guys are still having to deal with her feeding issues. Hang in there!

The Simmons Family said...

I hope that Gracie had a wonderful FIRST Halloween!!

I am amazed that you pumped as long as you did... I only made it 4 weeks and I was so done. I hope that you get the reflux/formula situation figured out...it seems like it's an experiment everyday.

I'm glad that you found that dancing and lip gloss will cheer her up in a snap!

Hopefully after the GLenn, her crabby patty side will disappear and she'll feel better!

Andrea

Avery said...

Michelle--
We noticed the same thing when my milk supply was ending and I was giving Bela more formula..It was just not agreeing with her and she would vomit everything we fed her. We were contemplating trying to get breast milk from a milk bank when 10 breastfeeding women in the ward volunteered to pump milk for Bela and I have been giving her breast milk ever since. She keeps down almost all of it, we noticed a HUGE difference. Obviuolsy that is a unique situation,and we are SO lucky, but Bela's vomiting went WAY down when we found a way to get her breast milk... Insurance would cover it from a bank if your drs said that's all she tolerates. Also, we noticed big improvement when I took her OFF her reflux meds. I didn't think they were doing anything so I took her off them and noticed things improve drastically over the next couple days as her body was able to do things the natural way. Anyway, I know it's different for every baby, but we've had lots of the same problems and those are things that helped us.. Hope it gets better, it's soo frusterating. So glad Gracie is still doing so good... Oh, and the fussiness and crankiness will get SO much better after the Glenn. I feel like I have a new baby..it's incredible the difference in them. I just think they never feel quite right because they are doing so much extra work before the Glenn... Good luck with everything coming up! We continue to pray for your little miracle..

Avery

susan said...

Oh, Michele, it was so good to see a post from you. Can't wait to see the pictures. So sorry that she is having so much trouble...poor little sweetheart. Don't you just love Mamma Mia. Robyn and I went to it for the 4th time last night. I just want to jump on the bed and sing and dance like that sometimes. Maybe that's an idea!! Just be sure to post pictures.

Melissa said...

7 1/2 months is amazing and you are an amazing Mom to have gone that long. I hope the formula and reflux stuff all works itself out soon. And how nice that you get to spend your holidays with Gracie girl at home. I hope they are wonderful!

Harry said...

So wonderful to hear all the good news!