Friday, April 30, 2010

Still Waiting and Worried

Our doctor called last night to say that the test results aren't in yet. The hospital didn't think they would even have them by tomorrow...They will most likely be in my MONDAY!! What!?! So we have to keep doing this...


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and this...


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ughh and this...


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I know it is worth it...


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But I am so worried. I feel like we are being tortured, and the more I research the more worried I become. There seems to be a lot of conflicting information about Duarte Galactosemia. Children that are perfect, breastfeed and develop great. And some other stories. Some scary stories. With lots of things to worry about and make me cry. Everyone keeps saying not to worry until there is something to worry about. Yeah right. That just seems nearly impossible at this point.

From most of the information I have found, babies eat a half and half diet. Half breast milk and half soy formula. The problem with that is that Ellie hasn't done well on the soy formula. We are actually switching her today to another hypoallergenic formula. She is spitty, gassy, and waking up from her sleep crying in pain from poop and gas. It is literally ripping my heart out to see.

The doctor told me to nurse her today a few times. Whooo Hoooo! He said that she is not going to end up on an all formula diet, so let's just do half and half until we get the results. He said to still say a prayer that we just got two bad tests. But, we need to be prepared for other results as well.
My Mom and I were just talking this morning about testing and information. From what I have been reading there are probably lots of people that are carriers of the Duarte Galactosemia gene, and were probably fussier/spittier babies. But, they just didn't know why. Do we just know too many things now? Is there a possibility of too much information? Last week Ellie was a picture of sunshine. She was so happy and content. She would nurse and take these great naps. Just settle right down and purr herself to sleep. She was growing and I mean growing. If we didn't have this test none of this would be happening. The doctor still really thinks that she will just drink breast milk and need to be monitored.

I have found a few blogs about this too. One mom has three children that have Duarte Galactosemia. They are great. They are perfect kids. She only had one little post about it. She said that she has it too. It isn't a big deal. Then you read some other things that are much more concerning. Children that have a hard time in school. Is this really a connection? Or would they have had some of these issues anyway?

I just want an answer for now. Let's just start with an answer. Then let me talk to the doctor and experts about it. Just give us the answer and let this mommy figure it out from there.

10 comments:

paige said...

i am with you
we are in such a fog during the waiting time
answers seem to help give us focus

praying for ya'll
xo

Lindsay said...

I love you! I know its hard not to worry.. I can't imagine having to wait to find out whats going on! I am praying for everyone.. did the dr. want to have Bradley tested?

Jenny said...

We mommy's out here are here for you. I have been thinking about you and your family...hoping all is okay. Take care!

laura said...

thinking of you with lots of love and hugs!

Krystyn said...

Thinking of you...and hoping you aren't worrying. But, I know you are.

Hoping for that good news on Monday.

Lauren said...

Just read about all this. So sorry for all the worry and unanswered qts. We are praying for you all and asking God to keep His hands on sweet Ella. Want to see you soon. I'll call you later this week.

Love and prayers!
L

Chelle said...

My heart is just breaking that you are having to wait. Praying for you guys...and ohmygoodness, she is SO cute!

xo

Elise said...

I have just come over from your sisters blog and read your recent posts all about precious Ellie. Please know that you, Ellie and your family will be in my prayers.

amanda said...

all i got is more sorry and happy healthy thoughts coming your way. oh and hugs. lots of hugs!!

T. Suzanne Eller said...

My grandbaby has classic galactosemia. If you would like to connect with her and others who have children with galactosemia, please email me at tseller@daretobelieve.org -- And until you have all your answers, please, please stick with the formula.