This is a way for us to update everyone of what is going on with our daughter and her struggle with Alveolar Capillary Dysplasia with Misalignment of Pulmonary Veins (But we thought she had Pulmonary Hypertension) .. She is now waiting for us in Heaven and we can't wait to see her one day, we love & miss you our Baby Mama!
Saturday, January 8, 2011
Eowyn Update 21: First Trach Change!
So the first Trach change is complete .. actually it was done this morning before I even came in to see her, but non the less it's done, it went perfectly and all I have to do is wait till she's done with her nap to finally be able to hold her YAY Praise Jesus!!!! I will be getting a picture of that and posting it for all to see. So a couple of things have changed since my last post and all for the good .. As you know she got changed into a bigger bed and we have managed to deck it out with toys and decorations to keep any babies attention going for hours lol, the bed is really cute and super colorful, I'll try to get a picture of it up soon. Another big step for her is last night around midnight the doctors were doing rounds and told our nurse to turn off Eowyns' Morphine and Versed completely .. She is now on METHADONE and ADVENT!!!! Never thought I'd be glad to say my kid was on Methadone but here we are and I am so excited .. The nurse (Raquel, who is another one of my favorite nurses, she's awesome) told me the Methadone makes her sleepy so that's why I'm waiting for her to wake up to hold her .. I also found out that the Methadone and Advent is given every 8 hours orally, first they give the Methadone then 4 hours later the give the Advent, so every 4 hours she is getting some type of medication and now every couple of days they will slowly go down on the dosage till she is able to come off of them both completely. The doctors have also been trying to increase her feeds but every time they go up on the cc's the baby ends throwing it all up, or at least most of it .. She's still pooping so I know she's getting something, she's just not ready for that much. She has to be on 90cc's of formula before she can go home though so I don't know how long that will take. Currently she is on 25cc's and it's on a constant drip of formula .. she has to go from that to eating 90cc's in a 30 minute period every 3 hours. It's fair to say that on the feeding department she has a little ways to go. But also she has to be bale to tolerate the 90cc's before they will even put the GI tube into her belly. The lower GI still has to be done before they put the GI tube in so she has a little while to go to get used to the 90cc feeds. So everything is looking really great, PRAISE GOD!!! He is so wonderful and I just love watching the hand of God move in our family .. To look back at the first pictures of her when she first got here and first got on ECMO to looking at how she's doing now, it just blows me away in amazement at how God works and not just through this situation but through everyone who has been involved in reading this blog, praying so diligently for her and everyone who has supported us financially .. So many people have been touched and changed through this and I am so glad I have been able to witness everything .. Especially to be blessed enough to see this miracle first hand. God is so Fantastically Amazing .. What else can I say!!!!
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