Going home with Lilly for good.

All I can say is that God knows me so well and He truly will not give you more than you can handle. He will stretch you pretty far and farther than what you think you can go though! So we went through the 48 hour no episode at the hospital. I asked all the nurses and doctors if its possible for her to have any more after we are discharged. They said it is not impossible but it is highly highly unlikely. We knew that she was going to go home with a cough. Hello she does have whooping cough and I knew she would have little cough spats that we would have to suction out all of the junk she would cough up with the bulb syringe. We get te discharge orders and are soooo excited to go home. Gabby literally did a happy dance in every room of our house at 10 pm! ;) we finally go to sleep for the night and I hear Lilly cough so we sit her up like we have been doing all along and she cough cough coughs and all of a sudden she starts going into her deep cough where it sounds almost as if she is gulping her cough and Dave and I panic...I immediately flip on the light to see if there is color change and she stops breathing, around her mouth and eyes turn blue and all we have is this bulb syringe, where up until this point I thought that thing was only to get nasty boogers out of her nose. She finally gasps for air and does her little coughing spell and her most pitiful saddest heart wrenching little whine after and immediately falls asleep from exhaustion. I wanted to call 911 right then and there. We call the nurse line at CM and they said we need to bring her back immediately. So we rush to the ER yet again and start all over. I finally got back to our room around 3:30 am and talked with the nurses and doctor and they say we need to start the 48 hour count down again. She has another episode at 5 am. I slept in pretty late considering how late or how early I went to bed. I was so overwhelmed at really had no clue how to process everything that was going on. And then the doctor comes in and I know God sent her to me at that very moment. She comes in to talk with me about the 48 hour release. But then she tells me that her son had pertussis at 20 days old and has first hand experience with this disease. Her story was almost identical to mine where she begged for him to be tested and was denied up until the point where it was too late for antibiotics to help anything other than take away contagiousness. She then goes on to tell me they call it the 100 day cough for a reason, and that she will more than likely have coughing episodes where she has apnea (stops breathing) randomly this next month and possibly through September. But she gives us another option vs. staying in the hospital that long or coming back everytime this happens. She said they went home with an apnea monitor that alarms when heart rate and oxygen level are too low and oxygen. She makes the call for us to get this set up, and we are thrilled! Honestly Dave and I have seen this so many times now that we feel more comfortable doing everything than watching a nurse do it. Faith is an easy thing to talk about but the hardest thing to do when reality is literally slapping you in the face. The healing for her was always there and those two days we went with no episodes I believed it, received it, prayed for it. But when we got home and she started coughing I immediately panicked and doubted and wondered if she would stop breathing. It is so easy to have this unshaking faith for someone else that in reality if something actually happened to them they would think it was horrible in the moment, but it wouldn't effect them for the rest of their life. It is another thing to have faith for someone so close to you, that it would change the rest of your life. Dave and I talked about do we just have faith that God is going to completely heal our little girl? Or do we just keep her in the hospital just in case? Does that mean our faith is weak? And are we perfectly ok with Gods sovereignty that whether he heals her or the unthinkable happens? And I told Dave that I could not live with myself for the rest of my life if something happened- I would blame myself. And God met me where I was, and gave me a doctor who has worked here the whole time, who from the beginning I knew her name and she was just never assigned to Lilly. Who just happened to have the same story as me. I don't believe that was just coincidence. He saw my weakness and met me where I was. Is it embarrassing for me to admit that, absolutely. I wish I could have this amazing testimony that God miraculously healed my daughter wholely and completely. And I'm sure I would have that story if I had just believed him for it. But the funny thing is He still gets all the glory. He still gave me an answer and he still can heal her completely, but he gave me exactly what I needed in this moment. And in the end my faith to trust that He will provide exactly what I needed has grown and He still gets all the glory. I hope and pray we don't even have to use it at home, but how good is my God to give that to me so I can leave this hospital with confidence. He never fails. My faith and trust may fail, but He never does. I may be weak, but Your spirit's strong in me. My flesh may fail, but my God you never will.