Sunday, October 12, 2008

End of Weekend

Jaxon looks good today. The medication seems to be helping him keep his food down, along with his food being administered via the pump. He takes 1oz over an hour every 2 hours, and then a continuous drip over night. We'll start practicing with the bottle tomorrow when speech therapy can see him. They also stopped administering him his diuretic, which is contributing to his sodium levels being off. We hope he can remain off the diuretic...we have a feeling that was contributing to his vomiting as well. His weigh-in today was 5lbs, 14.2oz, but that's not his "true" weight since he's full of iv fluid and has a big splint on his arm for the iv...but it definitely means he's gaining again!

Some cute shots of him in his crib this morning. We were playing with a stuffed animal and music...



This shot steals my heart...
Brady with Father Dick this morning - thank you for visiting us Great Uncle!!
Brady hanging out on Nana Letts in Jaxon's room yesterday.

To the person who posted this to me:
Anonymous anonymous said...

Oh I am so sorry to hear about your plight. I stumbled across your blog and was interested as I have triplets and my girls were momo, my other is a boy.

Are you worried he is going to die? I would be so out of sorts. But remember honey, if he does go on to the Great Lord, you have your other one. Isn't it such a cruel fate to force such painful medical treatment on him for you own reasons of wanting to keep him dear? 
Much blessings and remeber the Lord decides who to take, maybe just let him go.....


I would normally ignore these kinds of things, but in my current state of mind (and since we are talking about an innocent baby which whom I'm the voice for) I do not appreciate these kind of responses. I'm not sure what kind of "painful medical treatments" you think we are doing to my son...but rest assured, we are not torturing by administering fluids to a dehydrated baby. In fact, I believe letting him throw up continuously until he dies would be the "cruel fate". I also believe that if I were to "just let him go" I would be in prison for child neglect. I don't appreciate the insinuation that I'm putting my son through pain for my own selfish reasons. I'm shocked to read that you yourself are a parent, and offended that you use the Lord's name for such ridiculous statements. Please lose my web address.

31 comments:

Taken Care Of said...

I too have been following your story for several weeks now, as I am expecting boy/girl twins this fall. I have found your journey nothing but inspiring and couragous. You and your family seem to be doing the best you can in a hard situation and shame on that person for making you feel any differently. I'm sure that Jax will pull through; he's done it once by being allowed to go home, and I am confident that he will pull through again. I admire you for remaining sane in this rough situation, and I'm sure that this time next year, your little one will catch up with his brother, and you will have your hands so full that you might loose a bit of sanity then! But, the point is that you will get there.

He's a strong little guy, and he'll get through this.

You're in our thoughts!
Carrie

Lindsay said...

I've been reading your blog for a few months now and wanted to tell you how much I admire your strength. I continue to pray for your babies. You are doing everything your sons need right now. Delete the negative comments and continue focusing on the positive. Your sons are adorable :o)

SSU said...

I have been reading your story since before Brady got to go home. I think the commenter just didn't take the time to read your story. From what you have shared, Jax's only problem is keeping his food down and that is something that hopefully some day he will totally outgrow! Keep the faith!

Mommy Moreno said...

like PP's said - i too admire your strength and wish you & your family only the best.

Your boys are fighters and they will BOTH be home with you soon. There are so many people praying for you & your family - many more than the insensitive & clueless anonymous poster type.

Kelly said...

I posted a long time ago, but more of a lurker praying for your family as I read your journey but....

Holy...what?

Sorry, I don't even know where to go with the comment posted.

One of my twins had silent reflux. She didn't throw up, but instead it went back down her esophagus causing twice the amount of pain. I had my bags packed for the hospital each time we went to the Dr. in HOPES that they would admit her. Trying to feed a reflux baby and keeping it down is beyond stressful (while taking care of another baby). I was on pins and needles expecting a dr. to tell me it was FTT and that a G tube would need to be placed as she was taking in maybe 10 ounces a day and started an oral aversion. An upper GI confirmed it (the Dr's didn't believe me as she wasn't throwing anything up). Thankfully the medicine was changed and things improved greatly.

To the poster who made that comment please be informed before you make such outrageous, unintelligent comments.

Jax is in the best place he can be right now. He will get better, he will gain weight and you will look back and wonder where you got the strength to get through it.

stephanie said...

I've been a reader since well before the boys were born and I want to punch that poster on your entire family's behalf.

You are incredible. You have handled this entire journey with such grace and strength and Jax (and Brady!) is so blessed to have such a wonderful mom who goes to the great lengths you do to make sure he is getting the best care possible. Keep on keeping on.

::big hugs::

Valerie said...

I'm happy to see he's gaining weight. I am so sorry hon that you have to go through this. I'm also sorry that you have to read an ignorant comment from and ignorant person. Take care sweetie. ((HUGS))

Elizabeth said...

i am shocked by the comment you received. i was also a Failure to Thrive baby (and am 28 yrs old and planning on having my own children now).
making sure that your child has the fluid and nutrition he needs IS being a wonderful parent and I send much love to all of you.

saucysarie said...

Oh, Annie, I am so sorry for the ignorant comment you got. I only know you from the nest (the bump- whatever) and I know that you are a great mom. Only a true, loving, nurturing mom would know the difference between "giving him fluids to help simple dehydtation" and "making an innocent baby suffer". Some people are whacko out there and when they leave others comments it is really something in their own lives that is amiss. I'm sorry that you had to be one of the few that weirdos find and send creul comments to. I know that what you are doing for Jax is the best for him, because he is much better being here with a mom and dad and brother who love him and care for him. Try not to let others bother you, even though it's hard. You know what's best for your son. You and you sweet little boy are in my thoughts!

Sarah

Anonymous said...

What a TERRIBLE comment to leave you. I think this person has a sad life and wants to make themselves feel better. Seriously, who would right that! You are doing a wonderful job! Kristin

karyn said...

WOW! what an idiot. i was pregnant with twins at the same time you were, only i was due a few months earlier than you. i used to see your posts on the multiples board on the nest (i always lurk there...) anyway, this anonymous poster must be crazy to say you are doing any sort of disservice to your child. both of my babies have reflux, they spit up at every feeding...always have. this person clearly does not understand the pain that you as a parent feels each time your child throws up in pain. this person must not know what it is like to spend time in the nicu, how emotinally draining it is when you are there and how heart-wrenching it is when you are not there. this person also clearly should not be speaking about the lord and his will, because i am pretty sure the lord does not want rude, ignorant people leaving comments on peoples blog that are purposely upsetting and uncalled for. sorry about the rant, i have just always admired your strength and i think you have plenty to deal with without this crap. the doctors will figure out what works for jax, he will thrive, he will come home, and this will all be a distant memory someday. stay strong, there are many people who look up to you. and...(because i never comment or post) your babies are ADORABLE!!! i love there little wide eyes, so cute!

Linda said...

I'm so sorry for the comment that you got. It's the last thing that you need when going through something like this. The pictures of Jaxon you posted are adorable. He continues to be in my prayers

Erin Tukua said...

I am in total disgust right now after reading what "anonymous" wrote. Clearly, this person does not have a grasp on reality. Annie, you are such a strong, loving and compassionate mother. Please do not listen to ignorant comments like these. Your strength and love is an inspiration to me on a daily basis.

ajanes said...

I'm sorry I haven't been able to check in lately. I'm sorry Jax was diagnosed FTT. I know that is a hard diagnosis. As far as the comments from someone who obviously has no idea what they are talking about, I'm sorry you had to deal with that. As hard as it is, Jax is exactly where he needs to be. He needs the continuous feeds and the IV fluids. I hope you are hanging in there. Remember to take care of yourself. The boys need you!

Katie said...

Your boys make my heart melt - they are just so, so beautiful!! Those photos of Jax today are just gorgeous - what a beautiful, alert, perfect little boy. I can see in his eyes that he's thinking, "just watch, mama, I'm getting better and we're going home soon!" Before you know it, you'll have 2 little boys tearing through your living room, jumping on the couches, giggling like crazy, and pushing trucks along the floor. And this very difficult time right now will be, fortunately, a thing of the past - but will make you such a strong mother. Your boys are so very lucky to have you and your husband as parents. Know we continue to root, support, pray, think healing thoughts, and send love and hugs to you all during this hard journey. We wish we could help you - but know we are lifting you up in spirit and sending our love and support.

As for the awful commenter, that person couldn't possibly be a mother to say something like that, and certainly has no idea what it is to be a Christian. Please don't take a word of it to heart - easier said than done, I know.

Hugs, hugs and more hugs -
Katie, Anna and Margaret

Anonymous said...

I have been following you since the beginning of your pregnancy journey and now on your blog. I am truly sorry for what some ignorant person posted. You have to think that this person has NO idea of what you and your little ones are going through and is only preaching her ignorance.
Your boys are blessed to have you as their mother and advocate. I admire what you do and wish I had half of your strength.

Mary said...

Jax continues to be in my prayers nightly. God is watching over you and you family to help you get through this, this much I know.

Pam said...

what a friggin dumbass! i mean, really? who writes that?!?!? what an ass! sorry. jax sounds like he's doing better. i hope he can come home again soon. :)

rachael said...

first, i am glad to hear that jax is doing better - that is good news!

second, i cannot believe that someone actually posted that...what an a$$

Walking With Scissors said...

I've been reading your blog since before Brady was released from the hospital, but I don't think I've ever commented before.

I think your anonymous poster has some passive-aggressive issues. It's a horrible, hateful thing to wish death on an innocent baby. So he has reflux. It sucks and there are challenges, but you deal with it. Lots of babies have reflux. What kind of parent would think, "hmm, my baby keeps throwing up. Maybe I'll stop trying to help him and call it the Lord's will." Obviously this person isn't all there, or is just deliberately trying to be cruel and put unneccesary worry in your heart. Ignore it and focus on your beautiful boys. Jaxon will be just fine, he just needs a little extra help to get him over the hump.

((hugs)) to you. Sorry some people can be so ignorant!

Anonymous said...

I am a long time reader of your blog from the Nest and just want to say what that lady said was so wrong! Jax is doing great and he will fighting with Brady over toys soon.
Hang in there! Kiss the boys, hug your husband, and hang in there!
Your darling family is in our prayers!

Jill said...

Hey, it's Chalmette from the Nest. If you add a Feedjit tracker, you can track the IP addresses of everyone who accesses your blog and contact Blogger to help block that EXTREMELY IDIOTIC PERSON!

Don't let it get to you! You & your DH are great parents and I know God agrees.

I took Reglan for 9 months when I was pregnant. Should I have just thrown up until my son and I both died? I can't believe some people!!!

:big hugs:

We're praying for Jax to chunk up and come home soon! :)

Sara said...

Good for you Annie! What an idiot!

K. said...

You are obviously doing the best you can for your little boys, and your best is fantastic. Keep the faith, and know that you have many admirers of your strength.

~BIC

Maggie said...

That commenter was way out of line. Way to stand up for yourself and your son - you are doing a great job and are so strong.

Jen & Jeff said...

Some people just don't know when to shut the F*ck up. Jax will get through this. You will all get through this. Stay tough girl!

Wendy said...

Holy crap! That response in your blog is unreal. What a douchebag... (this is faerystargazer on the Nest multiples board, BTW). Set your blog to not allow anonymous responses or better yet, let your gal pals on the nest hunt down that broad 0:-) lots of love to ya!

brossettelewis said...

Ignore the crazy people.

Your boys are beautiful. I just stumbled on to your blog and want to read further back...I'm kinda just marking so I can find you later.I am a TTTS mom and suspect you are from what I have read. Fetalhope.org is an amazing resource for twin nicu parents...all of us have had at least one of TTTS, SIUGR, LUTO, etc.

Never give up hope!

bethct said...

I just want to say that I have been following your story for a while now, after "meeting you" on the nest. I am so mad at the post you got and just wanted to let you know that not all of your anonymous readers are that insensitive!
I wish little Jax a speedy recovery so he can go home and play with his brother soon!
(BethCT on the SAIF)

Anonymous said...

Fabulous response to the wax job! Wow I am glad it is you dealing with this and not her! What the heck is wrong with her?

massagegirly
(from the nest)

Pink-CJ said...

TOTALLY RIDICULOUS!!!!