Friday, January 30, 2009

Thank you - Update & 10 Months Old

Today is Evan and Cameron's 10 month old (7.5 month adjusted) birthday.

And what a great birthday gift for the boy to have all of you thinking of us. Thank you to Stephanie and everyone who has posted their well wishes for us! We are so thankful and incredibly touched by the outpouring of love and support from everyone. We love hearing your stories and reading your advice, keep it coming! It has helped a great deal. Even my husband is floored by all of this and is amazed again and again by this awesome community of ladies who keep a look out for us.

As of right now the boys have had a modified barium and swallow test as well as an upper GI EGD (endoscopy)biopsy to determine the severity of their silent reflux and if they have allergies to the milk proteins. While it's still too early for the GI EGD to show the results we are certain they have severe GERD up to the top of the throat with allergies but anatomically they are normal and do not need surgery at this time. They do have an NG tube because they refuse to eat (Evan especially, though we have convinced Cameron to take a few swigs of a bottle post EGD procedure.) They are sleeping better because they have full tummies from the NG tubes but they are fussy because of the tubes and the IV they had to put in to do the EGD. Cam has kept his feeds down but Evan is throwing up a bit still.

The doctors agree with us that for now we will not do the G tube as we want to see how they fare with dropping the Zantac and adding Erythromicin (sp?) for motility and trying to convince them to eat the nasty Elecare formula. If we can't get them to eat that then we will try some other formulas. If we do end up doing the G tube it will be because we are spinning our wheels more than we have been trying to get the boys to eat, but they feel the G tube is a minimum a 6 month to a year commitment, hence our hesitation to proceed with it. They want to monitor how well the boys will eat by mouth three times at day, which at the moment is not at all, and continuous feed by NG tube at night, and hopefully we will get the Erythromicin and Prevacid to work to allow them to eat.

The thing about all of this is that every parent struggles with making the decisions to do or not do something in hopes that it helps their child feel better and grow better. And after a year of constant worry and anxiety and sleep deprivation you really get out of sorts with worry. There is no right or wrong answer, and isn't that the kick in the ass? And it's even more stressful when you have more than one baby because you can not, no matter how hard you try, be in two places at once and listed to three different conversations with screaming babies. I am so thankful to have an awesome husband who has been by my side every step.

I will continue to post updates, but the internet connectivity here is spotty. Eventually I will get I around to posting the details of our stay and tell you all the oh so not wonderful things about this place and the psycho lady who keeps trying to come into our room. Again, to everyone, we just can't say it enough. Thank you. Thank you. Thank you.


ivory and jamie said...

I'm glad the boys are getting something to eat. I hope that these things they are doing result in some answers :) As always the 4 of you are in our thoughts and prayers.
Happy 10 months boys!!

Kim said...

I have been thinking of you. I'm glad that you're there, even though it's a scary time. I hate that you have to go through this, that they have to go through this. I hate that WE have to go through this. All that you can really do is have faith that one day things won't be this hard.

Preemie Parenting said...

I'm so glad you are finally getting some tests, results and potential solutions. I think the erythromacin will be really good for them (it's the only thing that works for Olivia).

Hopefully the boys will start being able to eat comfortably and easily.

Blue Moon Mama said...

No advice from me, but Ray and I have been thinking about you and the boys, and hoping things are going OK.

Michele said...

I just found your blog and want to tell you to hang in there. Most of us mommies of preemies are dealing with something like this...I have one (supposed to have twins, but Nick only lived for 2 days), so I am feeling very bad for you. You have two very cute and special boys. I am praying for you to get answers and that they start growing. Hang in there. *hugs*

Martha Compton said...

I'm glad you guys are getting some things figured out and the guys are getting fed. I know you've been waiting for a long time for someone else to take this seriously. You're an awesome mom and your boys are so lucky to have you to advocate for them!

MommaNecey said...

You are SO doing the right thing!!! (sometimes we just need to hear that, don't we?!) NG tube at night and "normal 10 month feedings" during the day - now THAT sounds like a plan! :) At their "normal" feedings they may not be getting much, but remember, it's good for them developmentally and it doesn't have to be stressful for YOU because you KNOW that they are getting a TON at night! :) If you can possibly enjoy (maybe not ENJOY, but not DREAD) the daily feedings, your sweet ones will pick up on your relaxed behavior and they MAY take more. maybe. My girls and I are praying for the four of you. You should be really proud of yourself and how well you are advocating for your boys.

Trish said...

I've been thinking of you guys. (Literally tonight I couldn't sleep and laid in bed wondering how you guys were.)
I'm watching closely since I think we're right on your heels with all of this.
I hope the drugs work some magic. How long are they expecting you to have to stay in the hospital?


Good luck girl..

Dianna said...

So glad they are getting to eat and hope and pray they continue to do so. *hugs* to all of you.

n. said...

i am glad they are getting something to eat and finally keeping at least some of it down. this parenting thing is such a hard job and you are doing a fantastic job! keep up the good work.

you and the boys have been on my mind constantly, so i was glad to see your update tonight. take things one feed at a time and call if you need *anything* at all.

Lisa said...

My oldest was born at 28 weeks and he had reflux. It wasn't bad enough to really slow his growth, however. We were instructed to thicken his formula with rice cereal. They also had us elevate the end of the crib slightly. I hope yours start packing on the pounds!

This is my first viist, I came from Stephanie.

liz.mccarthy said...

Hi, Not sure if we've ever chatted before, but I've been there in so many ways, so if I can help in any way, please let me know.

My micro preemie surviving twin got a gtube, and ended up being 100% tube fed for almost 3 years.....

A tube is a blessing, but at the same time very hard to get rid of.

I am in a support group for tube feed/feeding disorder kids, wish you were local so we could all help you!

(it's in San Francisco)

Liz M

3boys4tre said...

Happy Belated 10 months BOYS!!! The boys and your family are in our thoughts and prayers.

Hopefully the test will finally give you some answers and help in allowing the boys to thrive. Hospitals can definitely ba an adventure and you are truly amazing to do all that you do...keep your spirts up!

Threeundertwo said...

I cam over from Stephanie's blog and I just want to wish you and your sweet twins the best. Good luck. I'll be checking back in.