Just got word that Huntington Hospital won't take Moriah. I love feeling that my daughter is too much for our local hospital to handle. Aaargh. Can you tell I'm kind of getting grumpy here?
Good thing is that m's broviac is repaired.
Now we are just waiting to hear when chla picu has a bed. From my understanding, this could be within the next day - weeks.
Justin, Victoria, and Moriah
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- Justin and Victoria Nelson
- We are high school sweethearts who grew up in Southern California. We both graduated from the University of Colorado at Boulder (yes, we know we look like we're 12 years old =) ), and got married going into our senior year of college on May 29, 2005. On January 23rd, 2008, we received our gift, Moriah Sarjit Nelson. Moriah was born with a complex Congenital Heart Defect and CHARGE syndrome. She is our first child, and continues to be the greatest blessing we have received. This website is dedicated to her, and the journey she continues to travel (more details below in Our Story).
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18 comments:
I really hope you hear some good news from chla. Thinking of you all. love, Sarah & Alex
I'm so sorry for all this frustration my friend. I know you are so eager to get her home...and it will happen. Just another lesson our wonderful children teach us...PATIENCE. But being patient sure is difficult sometimes, isn't it?
Love and comfort being sent your way...Amy and Max
ughh so frustrating. Hoping this is just a perfect sign that it was not where God wanted her to be. I continue to not even imagine your frustration and how tired you must feel both mentally and physically. I know you know this...but as your friend I continue to say it. Trust in Him and HE will take care of you. It's there loss that they are not going to have the presence of Moriah and the Nelson family. :)
Continue to let it out, if you are frustrated let it all out. That is what this wonderful Blog world is all about! Everyone loves you and would think it would be strange if you were never grumpy :)
Lot's of love,
Chez Family
That must have been a scarey moment seeing blood everywhere. I am glad she is ok. I also hope and pray you all can go home (at least closer to home) soon.
Hugs,
Crystal and Eva
oh my! you guys have been going through a lot the past few days!!! have you guys tried UCLA children's hospital? we toured it before orion was born and we loved that hospital. we want to come visit before you guys go!
How scary this episode must have been. I'm so relieved it wasn't anything more serious and was able to be fixed quickly.
How aggravating that you got all ready for transfer and it isn't going to happen. I thought about you today since I hadn't read yesterday's update. I just pray that they will have an opening soon and you will be on your way soon. Just look at it this way--God must not have wanted her at Huntington for some reason. My prayers continue for you daily.
Prayerfully,
Janet
COLE'S Prayer Team
www.colesfoundation.com
((hugs Victoria)) You've had quite a day. Praying for you guys!
I wish I could do something to make it easier. Praying.
I'm so sorry these final preparations are dragging on. You will be back in LA soon and hopefully it will only be a few more days. Thinking of you and praying for you friend!
Hi Guys - If it makes you feel any better Huntington won't take Josie either. If she comes in on an emergency they send her straight to CHLA. Hope the tranfer is soon. Love to talk when you have a moment. Our love and prayers, Jenny and Josie
Sweet friends - All these ups and downs and hurry ups and waits must be so taxing as you anticipate your trip back home...
Thinking of you. Praying.
And Vic, you totally get to be grumpy...sometimes grumpy time is just what needs to happen. :-) Even a little foot stomping can hit the spot (for me, at least, in a little grumpy-fest).
Love you guys.
Girl..hang in there!
I haven't ever pulle the broviac out...but, I've pulled Isaac's g-tube button right out of his belly! I yelled for the nurse...she came over...said, "oh my gosh! I'll go get the manual!"
what?? the manual....you better get someone else..I was screaming down the halls for another nurse who didn't need a manual to help me!
You want your princess at the best hospital anyway...so, hang in there.
Alexis is too complicated for the "local hospitals" as well. Keep writing us about your frustrations and challenges, we've had our own situations and we know you need our support when you write about it. You're wonderful, Moriah is wonderful, Justin is wonderful and you will all get through this.
I can't say the word patience because I don't have much of it myself, but hang in and tolerate as much as you can. And get grumpy. The appropriately-grumpy parents will show how serious you are about getting Moriah to the right place.
I know you have a very bad experience and post traumatic stress but I can only say that CHLA PICU is outstanding, the Drs and nurses who saved Reuben's life being stand out.
but that said, yes, it feels like a terrible rebuke. Just think of it in terms of Moriah's way too special for them. And way too picky too. I can't wait for the new wing to open at CHLA. ;-)
Ugh... I can only imagine...
The "The PICU Parent Psychosis," the waiting game, the frustration, the deep want to be home (or near it) accompanied by the anxiety of what transpired there previously, the not knowing when and then to top it off, the broken broviac.
Victoria, I hope your Mama Heart has recovered from that, especially knowing that she was oblivious and pain free through it. :-)
Peace of mind, patience, comfort and much love being sent your way,
Kristi
And... I second Hannah... you totally get to be grumpy right now... totally.
Man, I am sure it is so hard waiting...you two are going to be some of the most patient people after this experience!! :) I am glad Moriah's little mishap wasn't more serious...that would have been so scary for you! I love the picture of her in her excersaucer, she is so darn cute! We are thinking about you guys and praying that everything will fall into place soon. Sorry I didn't stop by before we took off yesterday. I was running late but really wanted to see litte Moriah. I will be keeping tabs on you guys. There are bright days ahead for your family!!
Love,
Sariah and Conner
What about CHOC? Aren't you guys in the OC?
At any rate I'm SOOOO happy to see M doing so well. It's GREAT to see her up in her little saucer.
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