Alex is doing well - tolerating her tube feeds, getting chubby fast (so cute!) and healing. Loves being able to sleep in her crib again. Wound care is not fun though...The dressing around Alexandria's Mic-Key button needs to be changed daily due to seepage. I have to take the old tape and dressing off, clean under the button, put stoma powder on, the dressing and the tape. This takes me a while because I have to be very careful and gentle not to move or bump the button. Alex hates this and does not make it easy...It takes two people to change the dressing - one to distract her and hold her down and the other to do the deed. Today I was able to do this by myself with Alex paying no mind to what I was doing and that made me sooo happy! The wound is still new and fresh so the site is very tender. Alex is protective of it - some times more then other times. She gets pain meds as needed. Being home has been good but very stressful for me. I am to make sure Alex does not bump or pull the button or cause any injury or drama to it. Not an easy job. The button got bumped or pulled once every day since Sunday. When this happens it is painful so Alex screams and the surgery site bleeds. Last night I was in tears when this happened yet again at bedtime and decided to take Alex to the ER to make sure all the bumping and pulling over the past 3 days did not do any damage. It didn't and I was happy to have been assured of this. Funny, stuff like wound care really never did bother me much but seeing my baby bleed and to know it happened on my watch has been making me feel inadequate. It has also been making my stomach drop and heart sink. I have been feeling like a terrible mother and have been pretty discouraged and upset. When I feel like that I pray and quote God's promises to myself and remind myself of who He says I am in Him. I've had some very sweet times with the Lord lately which I am thankful for. I know that in 4 to 6 weeks the wound will be healed and the stress of causing an injury to the surgery site will be much, much less. For now, I don't really trust very many people around Alex (I know it's terrible!) because I feel like if she gets hurt on my time how can I leave her in someone elses care??? Our 2 babysitters are 2 of Alexandria's old ICN nurses so this helps tremendously but for now I am camping out at home. Baby steps. We are adjusting and learning together. I can't wait till the healing time is over! The Mic-Key button itself is working great! No more tube in the nose! Yayy! Keep on praying!
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oh kam! you are an amazing mother!!!! i can imagine the way the enemy attacks your thoughts, and the fact that you are alone with your mind so much! but i am amazed when i read this, how much strength and grace you have been given for the task that God has assigned to you. you are doing great! and your attitude is incredible! and all i can think is how terrific (not terrible) you are! OF COURSE it is hard to see your baby suffer. i can't imagine how much it would rip my heart out to see my baby in pain, and to feel like i was part of the reason they were hurting. but you are doing SO WELL, if you ask me... truly! what a deep love you have for your little one, and only a mother could go through what you are going through and still be sane! you are an inspiration, my dear!
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