Like a ship that's tossed and driven, battered by an angry sea. When the storms of life are raging, and the fury falls on me. I wonder what I have done, to make this race so hard to run. Then I say, to my soul don't worry Oh, the Lord will make a way somehow.
Yes Jay the angry sea is all around you. Your storms are raging and you don't even know it. Mama knows your race is hard and I wish I could run it for you, but we trust God, that He has your soul. We trust God that He's running your race. Don't worry baby girl, the Lord will make a way. God got this and God got you. You're covered.
Love Mama
I think I sing this song about 20 times a day to Jay. It comforts her and settles her down. She calms down and stares at me as if she's saying "okay mama". Priceless. Yesterday was a really tough day for us. Her doctor feels that everything that's happening is just the progression of her disease. We are out of ICU and in a regular room since all of her tests came back negative for infection. Thankfully last night Jay had a pretty good night. I'm sure she's so worn out from everyone touching her and invading her space. I think she eventually got up to a pound and a half of fluid and finally it's starting to go down. I can't imagine how miserable she must feel I just pray that God comforts her to no end. We should get her swallow study done today although the speech therapist isn't sure if it will help anything. Thicker liquids are usually good to help a baby not aspirate but in Jay's case she already has so much secretion in the back of her throat (very common for trisomy babies) that the thicker liquid isn't helping her. This secretion tends to weaken their lungs until they just stop breathing. It could have possibly had something to do with her not being able to take the next breath last Saturday morning. We should be getting dismissed today, but we haven't seen a doctor. We have lots of hard decisions to make. Decisions that a mom or dad would never want to make. Right now, we are coming boldly and specifically before His throne of grace asking that God opens her airway Himself. Reduce the secretion, Mold her heart, Develop that brain, Strengthen those lungs dear Lord, ease her pain, hold her in Your arms Lord. We trust you. We believe in Your Almighty power. We are thankful Lord. Thankful for Your showering grace. Thankful for the blessing of Life. Thankful for the purity of Your goodness. We need wisdom Lord. We need guidance to make the right decisions in baby girl's life. Not decisions about what we think should be done, but decisions that follow the plan that You formed so long ago. Keep Your Spirit and Your angels encamped all around her Lord. Keep her peaceful at all times Lord. You know her needs. SHE needs You. Lord You are the greatest and we trust You. Move us out of Your way to do what You do because You do it best. Clean our hearts Lord and receive our prayer. In Jesus name! God is good.
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