The Storm

We seem to be in the middle of a storm again with our darling girl Taylor Marie. We had a day or so of calm where we got to visit with our little miracle and see her personality. She is hitting each wave so far and coming out on top- I pray that this pattern continues. She is such a blessing from our most awesome God and I am thankful for her.
Her lungs continue to be a problem for her- they are underdeveloped. The ventilator provides her the support she needs but causes the natural lung development to slow. We are fervently praying that she continues to develop and grow so she will not need the oscillating ventilator and will be able to breathe on her own. The PDA is an opening between her heart and lungs. In a normal term baby the hole would close on its own but with preemies it can be a problem. It has closed up once in little Taylor but has opened again. The meds that treat this problem have side effects on the digestive system. She received meds for this when she was first born and has had trouble on and off with her stomach, bowel, and intestines ever since. The best option would be a surgical procedure to clear out the digestive system but the procedure is not without risks. Please pray that she is able to pass motion (poop) on her own and clear out her system on her own without surgery.
Her weight is up to 460 grams (about 1 lb 1 oz) these days and we are very thankful for that! She is growing :) Hopefully she will be able to start taking my milk soon to help her with nutrition. She is on nutrition now through her central line. She gets her daily doses of fats, proteins, minerals, vitamins, carbs, and everything else she needs. The only bad thing about the nutrition pack she receives is that is can have adverse effects on the liver if she is on it for a long period of time. Please pray she can start on my milk soon so she can get off the other before it damages her liver.
OK, we need some good things on here as well. The weight gain was VERY good! She is much more active and alert these days. Visiting her is always full of surprises now that she responds so much more. Her new favorite thing to do is to pull off her sensors and wave them around in her hands. She also sucks her thumb a lot. Her little eyes are opened more during our visits. She must love music as much as she gets sung to each day. Her little personality is so cute!
I will close this post with a portion of a song that has been with me today.
When the oceans rise and thunders roar, I will soar with You above the storm. Father you are King over the flood. I will be still and know You are God.
Lord, thank you for being bigger than all. Thank you for holding my daughter in Your hands each and every minute of every day. Thank you for blessing me with my wonderful husband who is a rock during these times. Thank you for wonderful family and friends who are praying us through the storms.