Reese and I had a good girls night even though she tossed and turned all night, a bright monitor stayed on displaying her brain waves and I couldn’t get to sleep–we are good!
My little lovie was so ready to go to bed but I couldn’t give her a bottle because we were waiting for respiratory therapy and medicines. This is where Reese gets a breathing treatment to open her airways in her lungs, then a machine that thumps on her chest/back to break up the fluid and topped off with suctioning. Last night they did deep suctioning which is extremely hard for me to handle because Reese screams bloody murder… and if you knew Reese–she is not a crier. I held her arm and leg down and just kept my eyes shut telling her it would be ok… mommy was right there for her…and praying to God to comfort us both!
Equipment we use every morning and night at home:
Nebulizer–medicine that she breaths in to open airways
Approximately 10 minutes each time
The Vest or as we called it “Thumper”
Of course, Reese has the pink vest but her machine is just white!
Approximately 20 minutes each time
Suction machine to get the fluid out–just a minute or so (additional uses as needed)
THEN after an hour and half of waiting I had a lion on my hands–pretty cute lion though!
I had asked and asked regarding all these things and I finally did what any mommy would do, I gave her a bottle! After her bottle, the respiratory therapist came and I told them sorry you’ll have to come back we couldn’t wait any longer. You need to wait at least 1 hour after eating because the chest/back compression could cause them to throw up.
We finally got some rest and Reese went home as planned today! The neurologist looked at the points in which I marked with a button during the observation and said she did not see any seizure activity. However, they have to read the whole observation and we will get those results in two weeks. So still praying for results to show no seizure activity! The doctor believes that Reese makes the little jester when she gets excited and it’s a muscle type of response and should not be alarming!
We also got our heart surgery date today–August 29th! We have been waiting for these dates since May! This surgery is routine for “normal healthy babies”… but Reese is at a greater risk due to her condition. We know the risk but pray that the outcome is greater than any risk. If you will please pray for peace/comfort for me, I’m having a hard time accepting all this again. It’s like sometimes I take 5 huge steps forward and then there are days I feel like I’m taking 10 huge steps backwards! Reese will be cut down her whole chest… she will never care about the scar but it’s just something else that will visually remind me my child isn’t perfect. Silly I know.. but if you have a child you understand and if you don’t you will one day–trust me! I know many of you don’t know what to say or do with all this going on with Reese but prayers for peace for me would be amazing! I know without a doubt that…”I praise him because Reese is fearfully and wonderfully made” but that doesn’t make my tears stop flowing sometimes because I grieve wanting to have the “normal” life/routine with a baby. I truly appreciate your prayers and faith in our father who loves us so unconditionally–even when someone like me has doubts or bad days.
“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us” Romans 8:18