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Friday, September 24, 2010


So its been a few days at Dell Childrens hospital and already, we are thrilled and settling right in at our new NICU residence. The exiting news is that Thurston already, in this very short period of time, has been looked at by almost every specialist that must exist. He has been seen by two pulomonologists, a GI specialist, an ENT specialist, a heart doctor, and of course his Neonatologists as well as ot, pt and a life care specialist. The absolutely wonderful thing is the first day we were there, both the neonatologist and the pulmonologist took one look at Thurston and said....ummmm this kiddo does not look or present like a trach kid, with both of the docs saying, "wow, we were expecting a lot worse". WOW WOW and more WOW. Now by no means did they mean Thurston is not sick but I think both of them thought that we need to investigate Thurstons case a lot further before we even think about giving him a tracheostomy. The neonatologist even said he would rather wait even a couple more months and do some further testing then to trach him just to get him to my ears. All I want is the best for my son whatever that entails and in the end, like I said before if he needs a trach than thats what we will do but so far, no one is in a hurry to perform any operation, and everyone seems to think we have some time to do some investigation before that might even be a possiblity. They both also said that they have never really seen a kid on the nasal cannula that needed a trach and the kids that were candidates for trachs are usually vent dependent, not breathing on their own etc. So that was very reassuring. The pulmonologist said that his excessive oxygen needs might also stem from some mild pulmonary hypertension and they are also investigating reflux as a possible culprit as well. So they are switching around some medications, giving him some lasix, doing some more echos on his heart, putting him on nitric(which treats pulmonary hypertension)and they are nj tube feeding him where the tube bypasses his stomach and goes directly into his intestines, with the intention of trying to reduce his reflux, gagging, and incessant coughing episodes. All of this is hopefully going to help reduce his oxygen needs and at the very least, make my kiddo a little more comfortable. Wow, they are really switching things up quite a bit and doing a lot in such a short amount of time.

The next most beautiful thing to happen is my sweet daughter and sweet son finally got to meet face to face for the first time. It was so sweet. The child life specialist gave Viola a doll first that had all of the tubings and wires that Thurston has to prepare her, allay any fears she might have when she meets him, and see how she would react to all of the medical equipement. I have to say, I almost wish we would have moved to Dell sooner, like a few months ago. They really specialize in so muh more than just medicine and we feel like we are such a huge part of Thurstons life now, they really make you feel like a family and that you are just as important as the patient is, now thats what Im talking about.

Viola was so exited. The first thing she did was to put the pacifier in Thurstons mouth. She stroked his head and he just kept staring at her almost as if he recongnized her or something. Then before you knew it, she gave him the biggest most beautiful hug ever. It was such a beautiful day. By the way, I was able to actually leave my mom with Thurston alone when I went to pick up Viola from school. Wow this place is so freeing.

So for now, we are still just trying to figure everything out. Nothing has been ruled in or ruled out, but at least we are on the path of discovery. Needless to say, we couldnt be more "Dell"ighted with our new residence and just hope that we can soon move forward and finally get our kiddo home where he belongs.

Here are a few recent pictures:

Thurstons new digggggs!!!

Awwwwww Brother and sister touching each other...look at Thurston trying to copy sissy!!

Are you sure she's my sister mom?

Viola giving her brother his paci, already mommys big helper!!!

Our first real family portrait...boy are we ever happy!!!!!


  1. love these donna :'))

  2. Donna C., let's do a celebratory TAP all look s-o-o-o happy and LIFE IS GOOD!!!

  3. Donna.....thanks for the up date. You all con't to be in my thoughts and prayers. Viola is just so grown up and beautiful! And your lil' guy is just so precious! Hang in there chica....<3 ya lots ;o)
    Patty G (Diego)

  4. Feel so lucky and blessed to have been a witness to this happy day. xxoo


  5. I am so happy I read your post! The pictures brought tears to my eyes. I am happy you had that first moment with your kids together. I am so happy that you have had great news and he is doing so good. Amazing what a second opinion and new NICU does.
    Your son is beautiful. I'll keep praying for you and your family.

  6. I continue to cry!! Beautiful!!! I love reading about how you are all doing and ecstatic to hear that your days are filled with even more joy and less burden!! We're praying for you guys and thankful for each of the specialist that are working together with you and Chad. Thank you for updating! :)

  7. I am so, so, so happy for you and your family. Those pictures are adorable. It seems like this is going to make your very complicated life just a little less complicated. I'll be praying that they find some solutions for Thurston's care soon. Thurston is looking great too!

  8. I'm so happy for you and your family! Thurston is getting so big. ~Dawn

  9. Great update! Man, was I off in my reply to your last post. I am so sorry-I'm glad he's in a great place!
    Go Thurston!!!

  10. I am so happy for you! The pictures of Viola and Thurston are priceless!

  11. hola dona soy socorro We're praying for you and thurston. cuidate mucho. love soco