Wednesday, January 19, 2011

Today has been a struggle

I want to post something happy but your struggling again.

A ridcoulsly cute picture that Auntie Tiff took of you.
You can see how small you are here compaired to the ducky



Today we tried to wean you from the vent and you didn't last a whole 20 minuets and it was so hard on you. We are really starting to get worried about your respiratory status.

Your hemoglobin and hematocrit (blood levels) are low and we can't figure out why so your getting another blood transfusion.

You've lost weight.

Your restless and unhappy.

You suck on the pacifier but it no longer satisfies you. We think you finally getting hungry but we can't feed you while you remain on the breathing machine. Everyday they tell us tomorrow we they will feed you but it doesn't happen..

Your Dad and I are feeling so disheartened and we are overwhelmed with worry.

You are getting a picc line tomorrow (IV that can stay in long term) and they plan on giving you anesthesia and will have to re-intubate you. I'm strongly against putting back on the breathing machine for any other reason then respiratory failure but it's the policy of the hospital and there is not much I can do about it. You do really need the Picc line.

I've assisted in 100's of Picc lines and have NEVER need to sedate a patient so I thing it's ridiculous that they feel it's necessary. If you get intubated and can't get back off we will be set back days. I will not be happy and have told the Dr's this.

It's so hard to watch you. Your sick of all of it. The pokes, the test, lying there day after day. This is so hard.

I'm hoping in a day or two we will have made progress and today will be long behind us.


The first pic Auntie T took of me I had a big fake smile so she made me laugh and took another one


Auntie T kept rubbing your head with the ducky and you would get upset when she stopped

7 comments:

Leslie said... Best Blogger Tips

Amy, I'm sorry for all the difficulties. Saying that sounds so hollow; I wish there was something I could do to make this better for you. You are all in my thoughts as always. Mason is absolutely gorgeous - love that pic that Tiff took, and the ducky too. :)

The Houston Family said... Best Blogger Tips

More prayers coming your way!

Melissa said... Best Blogger Tips

Oh Mason your so so so CUTE!! Sweet boy fight a little harder we know you can! Your amazing!! I see the love your parents have for you and I am sure its helping your fight!! I am thinking of you guys and praying things start to move forward..
Melissa (Mommy to Maccoy TOF)

katt3233 said... Best Blogger Tips

Mason, you are so adorable! I wish I could take all the pain and struggle away from you. We love you, we're praying for you, and always thinking of you. Amy and George, I wish this was easier. Love you guys! <3

Anthony and Ashleys Mommy said... Best Blogger Tips

My son Anthony is a former 2lb preemie (now 3, was in the nicu for 91 days) Was wondering if they could step him down from the vent to a nasal therm cannula (moist water and oxygen in the cannula). My son was on nasal therm (a step before regular straight oxygen in the cannula pretty much until he came home. But it kept him off the vent.

Also re: the blood transfusions, that is very common with babies in the nicu that are sick and getting over surgeries. Anthony needed a few. Their bodies are just so busy trying to recover that they have a hard time making new blood cells.

You can visit our blog if you have any questions about respiratory issues. I'm very familiar with it . http://anthonysawesome.blogspot.com

Kim

lisad33611 said... Best Blogger Tips

Mason,

Your strength and determination to get better is the most amazing thing I've ever seen! I do not know you, however I cry and pray for you every day. Knowing that you are not in your mothers arms at all times breaks my heart. From this blog I know your parents love you and yearn to comfort you. You have gone through more in your few short days than most people will go through in a lifetime. I can't wait to read your parents' post saying you get to go home (and accomplish all the things on your milestones list).

Look how great you're doing in the video mommy posted. I saw you looking at your mommy, focusing on her voice with that look in your eyes that said you know she is your Mother, the one that loves you, her Jelly, more than words could ever describe.

Hang in there Mason. The pain will lessen everyday. You will get stronger everyday. You will be running and playing with your big brother before you know it.

Stay strong beautiful baby boy,
Lisa

PS - Tell Mom and Dad to start figuring out how to wear you in a wrap if they don't know how yet. Cause I know once you're home they'll never want you anywhere except next to their hearts!

Megan said... Best Blogger Tips

I wish I had some reassuring or comforting words to say, but I know that words can be so hollow.
Mason is truly a beautiful little boy and such a fighter.
Sending so many thoughts and prayers your way.