The title today is just how I feel for Gracie. I know, everybody says how great it is that newborns won't remember all that they are going through, but somehow, it doesn't make watching her pain any easier. I got here today and she was awake with a binky in her mouth!! The nurse said they had just changed the tape on her face that holds the breathing tube in place and that she about bit her finger off! So she decided to try a cut in half binky that they fit under the breathing tube. She seemed to like it until she started to cough and gag again.
So, yesterday when she was throwing up so much, they took her off her feedings. She has not thrown up since then. They took two x-rays yesterday and two x-rays today and all are basically inconclusive as to the exact placement of her feeding tube. But, because she was throwing up so much, they are just assuming that the feeding tube had moved and was not in a good place anymore. So they removed it and I watched as they put a new one down her. She went bright red and her eyes rolled to the back of her head-----she did NOT like it. This was her reaction, even on a dose of morphine. That one did not work so they tried the second one, I had to walk away and not watch because I knew she was in pain. They thought they got that one in and ordered an x-ray to take a look. Well, it was not in the right place. So now we are waiting to take her back down to the Flouro department so they can somehow take an x-ray view while putting her new feeding tube down. This will be the third feeding tube she has had put in her in a week! I think that she gags and coughs so much that the tube keeps moving around--that is just my theory. So, another fun day in the PICU.
They also trialed her off the ventilator and she did as well as they expected. They will do it one more time this afternoon. That's all for now. See ya.....
16 comments:
Oh, Michele, I'm so sorry. I can see why you had to walk away. I hope they get it in right this time. Love you, Susan
I'm so sorry you are having a hard day. Obviously every day must be hard though. That picture of her is adorable. She looks so peaceful in it. I'll keep an extra prayer in my heart for you today!
I will pray for you also. Just remember that all this will be over soon enough and you will get to take your little girl home...:)
Think Positive, you and your family have so much love. Just keep praying, God will dominate all!!!
Much Love and Many Prayers~
Allysa Barkdoll
You know it's hard to watch your baby get shots or do the PKU. It's been hard with my older children to see them getting stitches and we had a broken bone at one point. That was nothing! I can't even IMAGINE watching little Gracie go through everything she has. I'm sure it's agony. And- I hate throwing up!
But... there is a reason she still here. She's such a special little girl and a fighter. We'll keep praying for better results with feedings and everthing else!
We love you guys!
Keep up the faith.
Love, Kim
I am sorry it has been a hard day. Feeding tubes are hard to watch being placed. She looks so sweet. If there was not the breathing tube and feeding tube, you would just think she is a perfectly healthy baby. Happy one month b-day miss Gracie!
I am so sorry that both you and Gracie have had to meet these challanges. I hope that they will get this figured out soon. Happy 1 month birthday!
---Allison (Ethan's mom, HLHS)
Poor baby is right. Good thing she is so tough! I always love it when you put new pictures of her on. She is so sweet!
I know I don't know your family, but your little Gracie just really has a place in my heart. I think her whole story is just amazing and such an inspiration. I can't imaging how hard it would be to watch your child go through something like that and I am so sorry. I guess I just wanted to tell you that our family still is looking in on Gracie and is still keeping her in our prayers. Thanks for sharing her amazing story.
Gracie looks beautiful with her pedicure. Our little Eden has a hybrid form of HLHS and Down syndrome. She has had so many struggles following her surgery and we are still trying to ween off the ventilator after 5 weeks. We are also LDS and I know what you mean about the Spirit being intensified in your life. I love to read about Gracie's progress and think of you all often. These little babies are amazing and miracles do happen for we have seen them with Eden.
Love, Keisa
I held my hand to my mouth as I read your details of what Gracie has had to endure these last few days. I'm so sorry. I know that I wouldn't be as tough as her, and I know that I couldn't deal as well with it all as you have. Our Heavenly Father has given her extraordinary strength and will. He will comfort her and protect her during these procedures. Be strong. Our prayers are stil with all of you.
Leslie
That remindeds me of when Talmage was 6 mos old and they had to try 6 times to do a spinal tap at St. Marks. They couldn't get it right so he was sent up to PCMC and they finally got it done. I have never been so excrutiatingly emotional. I can say I've had a glimpse of what it feels like to be a helpless mom. It's our job to protect them, right? It's our instinct to keep them from feeling pain. So Sorry you have to go through this each day, my heart aches for you Michele. You are just as brave as Gracie.
Dear Michele,
Our comments seem so little to what you are experiencing. We can only offer our prayers, concerns and hope for you and Gracie. Everyday starts with looking at your Gracie and how she is doing. Then throughout the day to look in on her through your precious postings. We continue to pray for you and Tom and your beautiful children.
Mary and Barry Gledhill
Michelle,
I'm so sorry that you've had to watch and experience so much pain with your sweet Gracie. When Morgan had her arm surgery last year it was the worst thing of my life and you've been dealing with it for so long - I wish there was something we could do. We will say extra prayers for all of you that you will both be able to hold up. I'm glad she did well off the ventilator. I hope the feeding tube issue is resolved soon and that she can continue improving. You are really amazing! Gracie is lucky to have you as her mom!
Melissa
I do not know your family but for some reason came across your blog. I have been so touched with little Gracie's story. I have such admiration for not only you as her parents but for Gracie for being so strong and enduring so much in her short little life. I just want you to know that she will be in our thoughts and prayers, and if you do not mind I would love to follow her story. She is so precious and I KNOW she has an important mission here on earth...Thanks so much for sharing her as well as your faith and love for our savior. WE KNOW you can do it GRACIE!!!
With love and many prayers,
Jamee Colquitt
syracuse ut
Andrew used to throw up alot because of the high calorie formula. His body just couldn't handled that many calories. Just a thought if it isn't the tube placement.
Andrea Mathis
(IHH)
andrewmathis.blogspot.com
Michelle,
It is an incrediable heart wrenching thing to watch our kids in pain, and we are unable to stop it. Even with the knowledge that they have to go through the pain to get well, is is not any easier. I keep praying for strength for you and Tom, and your whole family. I am looking forward to the day, when you are able to walk out of the hospital with Gracie all wrapped up in your arms, and the kind of hard day you had today becomes a faded memory.
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