Saturday, August 28, 2021

Madeline || Update #10

Today is the 50th day of Madeline’s NICU stay, and yesterday she was seven weeks old! It seems fitting that with those milestones, there should be some happy news, and there was. I came in yesterday morning to discover her feeding tube gone! The initial reason for its removal was trouble shooting for some of her reflux/spell issues, to see if the removal might help that. The timing works out well, though, as she has been taking more and more bottles and getting less and less from the feeding tube. This should solidify that transition. 
In weight, Madeline is now up to 6lbs 7oz. Just a few more ounces and she will be twice her birth weight which is wild to me! As mentioned above, she continues to progress with her bottles. I am giving nursing a bit of a back seat for the time being, as she has still been struggling with that. The main goal currently is to just get her home, so we are going with whatever method seems to bring that goal the soonest. She is still having spells, as she sleeps, when her heart rate drops. They aren’t major but she has to have five days of no spells, and complete eating on her own, before she can go home. If she can continue with eating well, she should be permanently  done with the feeding tube, which takes care of the second item. 

Our prayer requests are for the spells to stop, and for her red blood cell count to improve. It hasn’t been climbing like it should and we are really hoping that it will improve. It isn’t dangerous at this point, but we are hoping to avoid a transfusion.

Thankyou once again for your prayers and love!

Have a wonderful weekend!
-Chels

7 comments:

  1. Chelsy that is good news about Madeline Sue eating without her feeding tube. Prayers that she will not have spells and her blood count rises.
    God Bless
    Joan,Marilyn and Marion

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  2. Do you guys have one of those owlet smart socks for Maddie? It's a little sock that they wear that measures heart rate and oxygen. It's literally a life saver and it would probably make the transition from hospital to home a lot easier for you guys! :)

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    1. We don’t yet but are familiar with them and are planning to get one for her!💞

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  3. I am a longtime Maxwell blog reader who has been praying for your family through this time. Thank you so much for taking the time to give updates. She is such a precious little babydoll!

    You mentioned that her blood count is still low and transfusion is a possibility on the horizon depending on forward progress. I just wanted to share our experience with our 7th when she was little. She tested low at her one year appt. and was put on iron supplements at 18 mos. because her counts were still low and she had lost more than 1.5 lbs. A month later, her counts were still dropping and were so severe that they had us take her to emergency at the local children's hospital. There, it was determined that she had no iron deficiency, only that her body had just stopped making red blood cells. They gave her a half unit of blood, which was administered over three separate times in a 24 hour period with breaks in between to make sure she would have no negative reaction to it. They sent us home with the expectation of having to come back for another transfusion later. Instead, the doctor called me the next week when she was tested again, and her count was 11.8! She never needed anything afterward and has maintained her own ever since. She just needed that little bit of transfusion to kickstart her body into taking care of itself. She is five now and is still going strong in her counts with no additional intervention.

    I apologize for the length of my comment. I know that your situation is not exactly the same as ours. I just wanted to give you some encouragement as you face the possibility of having to do as we did. I sincerely hope that you will not have to face it at all, but if per chance you do, we will pray that your outcome with a transfusion is as easy as ours turned out to be.

    May the Lord bless you and your family greatly!

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  4. A song I came across and thought of you as I read your story! One Day Closer (for Aliza) - YouTube
    https://www.youtube.com/watch?v=P8AWE7IEc2M&safety_mode=true

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  5. Chelsy, thank you for taking the time to gives updates! It's so amazing to see Madeline's progress! Praying for you all!!

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