How are you?

Saturday night right before going to bed, the hospital called. Ella had to be intibated- go back on the ventilator. She was having many apnic episodes right on top of each other, and her heart rate was dropping too. She wasn't coming back on her own like she had been doing. I did not want to hear that news. I knew we would and will have setbacks, but it was just hard to hear. We had just visited with her as a family earlier in the evening and then gone to dinner. I thought of going back, but I didn't. All night I questioned myself for not returning to be with her. Could I have done something? The resounding, harsh answer is no. There is not much, other than pump my "magic mommy milk" that I can do. Rough night. Sunday morning before leaving for church, I called to check on her only to hear she was not at her best. She had missed some feedings because she was not responding to them and properly digesting. I got ready for church but felt irritable and snappy. I went to church, held choir practice, but really didn't want to speak to anyone. I was asked the polite "How are you?" My response probably scared a few people. I could not reply with the typical "fine. How are you?". I responded to one with "I'm falling to pieces. How are you?" To another, "I feel like I'm slipping off a muddy slope. How are you?" I asked one would you like to hear "fine" or how I'm really feeling? I may have given too much up yesterday, shocking some along the way or I may have done what we really should do when asked how we are feeling. We should open our hearts and share...and the listener, having asked the question in the first place, should be willing to get the real answer. As followers of Christ, we have commited to bear one anothers burdens that they may be light. I thank all those innocent brothers and sisters at church who listened to me open my heart....and then some. After church, I was able to visit my sweet baby. She was loaded down with soft "bean bags" to keep her from moving too much. She was lying on her tummy resting, although that little wildcat tried to get her bum moving to get that bean bag off. I love her fighting spirit, but I think she needs to let herself rest. I think she has worn her little self out. We couldn't touch her at all yesterday because she was just not responding well to it. That's ok. I was fine just seeing my girl and loving her through the plastic box. This morning the doctor called. She does not have an infection. He upped her milk intake to 7cc every 3 hours. She tolerated all her feedings yesterday and through the night. Her metabolic screen (our oldest Sam has a genetic metabolic disorder- 3MCC) came back negative. She will have another echocardiogram to check on the open valve and tomorrow she will need a blood transfusion- she is anemic. They will try to wean her slowly off the vent as she can tolerate it. Today, if asked "How are you?", my response will be different. Better than yesterday. Surviving. Coping. Getting along. Dealing. Making it. Those are all very accurate. Our little family is trying to be as normal as we can in a very not normal situation. I am proud of my sweet children, Sam, Maddie, Jack and Sophie and my dear hubbie/friend, Hilton. We have always stressed the importance of working together like a team. They are doing great. I am proud to be on their team. Keep those prayers coming. Love to all.