Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Believe in Miracles

on July 22, 2013

I never thought the day would come so soon that the doctor starts talking to us about Agnes’ discharge date. He told us today that Agnes would be ready to leave the hospital by the end of the week, but because they need to monitor her for a week after stopping caffeine, she won’t be ready to leave until Monday, a week from today. That’s okay! I’ll take it!

Now that we’ve decided for sure to take Agnes home with an n/g tube for feeding, things are moving quickly. We still need to finish the n/g training and we need to get a bunch of discharge instructions, but for the most part we are ready. Also now that the pressure is off for Agnes to eat an entire feed from a bottle, she has really stepped it up. The nurse last night got Agnes to eat as much as 35 ml! This morning I got her to eat 25 ml, and the nurse repeated that at 1:30pm. Earlier this evening Agnes had a physical therapy session right before eating, so she only took 11-12 ml. Let’s all recall for a moment that yesterday she would not eat more than 5 or 6 ml from a bottle. This turn around is a true miracle.

Unfortunately, Agnes’ doctor is still telling us he is doubtful that she will be able to take a full feeding from a bottle. Dude! The evidence is right before your eyes that she is improving. Why do you think she will not continue to improve? Can we all please say a prayer for him? His name is Dr. Ahmann and I hope he doesn’t read my blog! (Or maybe I hope that he does…) My prayer for Dr. Ahmann is that Agnes will open his heart to believe in miracles, and to believe that every baby under his care has the chance to defy expectations. So there!

Dr. Ahmann did make some positive changes in Agnes’ care in order to prep her for coming home. I didn’t expect so much all at once (another miracle?). Today they took Agnes off caffeine which she was taking to assist breathing evenly with deep breaths. This is a great move for us because if Agnes had come home on caffeine, she would have needed continuous heart rate and respiration rate monitoring. Also today, they changed Agnes’ food from 27 cal per ounce to 24 cal per ounce since she has been gaining weight like crazy! This recipe will be easier for me to supply at home, plus it will make tube feeding much simpler; the 27 cal needs to be pushed through the tube by an electric pump because it’s a very thick liquid. The 24 cal can drip by gravity and flow easily through the tube. This change means we will be able to feed Agnes through her tube by hanging a syringe on a rack, and we won’t have to rent and learn how to use the pump! Score!

It was a big day for Agnes.

Agnes has been in the NICU for 35 days, and will be in for another 7 at the most, if everything continues to proceed without trouble. There have been so many highs, many more lows, and lots and lots of uncertainty. Just when I think all hope is lost and I get discouraged, Agnes makes a huge leap or we get some good news from a doctor. There have been many little miracles during our time in the NICU. None of Agnes’ bowels died before that surgery could be completed. The surgery went perfectly. Agnes’ airway turned out to be not as in danger as we had feared. She tolerated the switch from ventilator to Vapotherm. She was only on Vapotherm for a week. She tolerated the increasing feeds. She is responding very well to physical therapy. Agnes smiles. She is starting to eat more from a bottle.

I can’t wait to see what Agnes has ready to impress us next.

As Jeremy told me recently, it is a miracle just that she is alive.


4 responses to “Believe in Miracles

  1. JeneaSwainston says:

    Tears of JOY for your little miracle and for the rest of the family! Agnes really is from “Sturdy English Peasant Stock” as her Great-Grandpa Morris used to call Jeremy’s mother and 2 sisters (Myself included!) She is going to be full of surprises for all those educated people who think they know what she is made of! God is good! You go Agnes!!!

  2. Kathy Schwager says:

    Agnes truly is our little (really, pretty huge) miracle! I’m so thrilled with the progress she is making. Can’t wait to see what she does next!

  3. woodra01 says:

    Yay! Congrats on the progress! When Charlie came home, we found a doctor that was able to understand her needs and abilities well. Yay! For coming home soon 🙂

  4. The Redmond's says:

    Sometimes what we perceive as the smallest of miracles can change the life of the weekest in faith. God has brought Agnes here as his witness, faith the size of a mustard seed produces a great yield. God Bless little Agnes!

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