Tuesday, October 4, 2011
God is love...
We are home sweet home and back to a normal running house. Bray's screaming, Raghan's ignoring me and Jay is just simply chilling! I just love it. She's had her first bottle since we've been home and she did just perfect with it. Bless you Lord! Michael told me that when we rode off on the ambulance on Saturday Raghan said "At least we have a picture". Breaks my heart but I'm so glad that her teacher Mrs. Melton had all the kids in the class made her cards. I just love it and Raghan was thrilled. We're going to try and continue to feed Jay with a bottle but if it causes a problem we'll switch to a tube that's dropped down her nose and into the intestines. Right now my fav hospice nurse Charlie is on her way to visit us. Thank you Lord for discharging us and cover those that are still waiting to be discharged. Lord allow your Spirit to camp out in our home tonight. We need you. Please continue to hold and watch over baby Jay. Thank you Lord for putting us in a position to live by faith. Thank you for your everlasting love that we are so not worthy of. God is love. God is good.
A poem for my baby girl...Welcome home and Happy 3 months!
My world stopped
My heart dropped
In my arms
Your body went limp
Your arms fell to your side
all I could think was how short of a ride
I wasn't ready
It just couldn't be
I put my head down and cried Lord help me
My baby Jay
My baby girl
You tried to slip away
Away from this world
But God said uh uh uh,
Not just yet
I still have plans for you
Mama don't you fret
He said I AM GOD
just trust me
I got this
don't you see??
He showed up,
He showed out,
My God, My God
I just want to shout
We bless your name
So glad you came
To set us free
Lord we believe
Thank you Lord
Bless you Lord
Glory to God,
He is good I tell you
God is good.
Welcome home baby girl!!
 |
| I wasn't choking her, I was trying to get her to stop crying :) |
You are my peace and I worship Thee...
Home sweet home we're on our way...
We are finally leaving ACH. We had to wait for a portable oxygen tank. Now on to pick up the rest of the kiddos and then home sweet home. Thank you Lord for allowing us to bring her home. We are lifting you and praising you with all of our hearts. God is good.
Day 4 at ACH...We're back at Your throne BOLDLY and specifically...
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.
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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