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Nate and I visited earlier today and then left when NICU closed and then went back. That should help with the way I jumped around some. I did some copying from our site and added some things that were a little background.
Cayden is on full feeds at 33cc’s (full feeds) and they are weaning his TPN. He will probably be off his TPN in a few days if he continues to tolerate his full feeds well. he does have reflux and started meds for that. His doctor came over to talk to us about his stomach ultrasound. It was repeated a few times because the radiologist doesn’t see anything enlarged. She showed us what she was talking about and you can visibly see it. She let me touch it and it feels like a little hard lump. His doctor really feels like it’s his spleen and so, Monday she is going to work to get that figured out. She said it will be her project!
When we got there after the break we found out that around 8-ish, Cayden stopped breathing during his breathing treatment. His RT realized it and she and his nurse had to bag him for almost two minutes. Thankfully, he responded, as they almost had to re-intubate him. I hated hearing that he had to be bagged...nobody should have to think about that happening to their child.
To help his situation, they went up on his PEEP to a 7. An x-ray was performed and his lungs look good, but they feel like there is some narrowing of his airway. They’ll monitor this closely and can do some things if it keeps happening. We really hope that it doesn’t happen any more.
Oh, they did an x-ray to see if he had any more broken bones since they are worried about osteogenesis imperfecta - brittle bone disease. (He had a ridiculous amount of blood taken for all kinds of genetic testing over the last few days) They found no more NEW broken bones, but he had a sixth break, this one in his left clavicle, that was healing. It just got missed the first time. His nurses thought maybe he was now a record holder for NICU with broken bones. UGH!
In other news, we put a mobile in his bed now that he is in a crib. I'll get a picture of that tomorrow. He is staying swaddled to help his temp and is now wearing clothes! He weighs 4lbs 14oz now. He is gaining and losing, as expected due to being on actual feeds now and not just bagged nutrition.
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Last edited by Chatterbox; March 14th, 2009 at 10:43 PM.
Reason: weird spaces
Aw Tami, He is so adorable.. Hes getting so big!! He is such a little fighter!! I can't believe the amount that lil man is going through and he's staying so strong!
Hes so precious Tami
Even though some of it must be scary news, overall, I am so glad he is getting so big and is having full feedings! That is amazing news! He gets cuter and cuter everytime you share pics. Please keep the updated coming. I think about him all the time!
He is so precious Tami and getting so big I am sorry to hear about his apnea episode. I hope that was just a one time thing. It seems he is making SOOO much progress lately. I am still keeping him in my T&P and I hope he is home with you guys very soon
He is such a fighter Tami He looks soo adorable in that outfit. SOrry for all the scary news, I hope it doesn't keep happening (his apnea episodes) But I'm soo glad to hear that his feedings are going great Keep fighting Cayden!
I`m glad to hear that he is making progress. He is such a little fighter and a total cutie I know it must have been scary with the apnea episode, I hope it does not happen again. You guys are in my T&P`s every day. I hope he is able to come home with y`all soon. Thanks for the update
Oh my gosh, I can't believe he stopped breathing during the treatment. How very scary.. can't imagine...I hope he doesn't have any more episodes of that. I hope the bones heal quickly and he doesn't have the brittle bone disease. It will get easier soon for you, Tami.. HUGS. He is looking very good.. I love his little outfit and hat! Too cute.
Tami, just wanted to say that he is so beautiful! I love his little outfit! That must have been so scary! I am so glad he is breathing! Keep faith and give him love from us! He is in my T&Ps!!
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Laura, Wife to Will, Mommy to Gregory, Rafe & Sydney
Aww thanks ladies. We think he is absolutely adorable in his little clothes. We love looking at him while he sleeps or when he is focusing on us. We can't wait until we can bring him home, but last nights episode was a setback for him. His airway started swelling shut and it causes him to clamp down and then he can't breathe or get air where it needs to be - a result of being on the ventilator for two months.
We feel like it will be LATE April or May before he comes home, if not later. We'll find out before he comes home how much brain damage he has and what that could mean for him, which is pretty nerve wracking when we think about it. Everyone wants their baby to be as healthy as possible. Of course, we have high hopes for him.
We truly appreciate all the thoughts and prayers. We know the prayers have brought him so far and, for that, we are incredibly thankful. He's our world.
he looks so adorable in his little sleeper! how scary that he stopped breathing, but overall it sounds like he's making great strides. he's such a strong lil guy!
Tami that must of been so scary to hear that he had to be bagged. I know we all say how strong Cayden is and its true but gosh I think we need to give you props Mommy for going through this and not losing your mind even once!! Cayden is so lucky to have been blessed with a Mommy like you!!
I keep praying for the day that you can take your son home and hold him in your arms with out any tubes or monitors. That day will be here soon and then hopefully these memories will start to fade and be replaced with others.
I am happy to have an update on Cayden that says he's gained. Sorry about that breathing issue though, hope that resolves itself and doesn't reoccur. I'll keep your little guy in our T&Ps.
Yay on him graduating to an open crib, what a great feeling! He's so cute with his little eyes peeping through, what a handsome little man.
You have been through so much with him and are staying so strong, you really are the hero of our due date club. Congrats on growing such a fighter, keep up the good work Momma!
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*Thank you so much to Jaidynsmum for my beautiful siggy!*
Sophie Lucille: In my life for a moment, in my heart for a lifetime. May 25th, 2006 at 16 weeks.
We'll find out before he comes home how much brain damage he has and what that could mean for him, which is pretty nerve wracking when we think about it. Everyone wants their baby to be as healthy as possible. Of course, we have high hopes for him. 
He is so precious. 
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