Olivia playing in her bed at chop

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Beyond angry

So when Brett got back to the room, the doctor came to talk. After talking with everyone, she sees no need to do anything else. If she drastically changes then they will do cath, but all of her NUMBERS look ok. I am so glad we took her to the best hospital.  NOT!  They are treating her like a number not a baby. They want to fortify her milk again although she hasn't need it in over 4 weeks. Yet again, they want better numbers. I just want to know if they will be the ones to handle her funeral arrangements when the everything is done goes to oh crap we were wrong. How are we supposed to bring her home if everything they told us to call about, now we are supposed to ignore.

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Olivias Glenn

Today,  we scheduled her Glenn.  It is currently on the books for March 19th. That is, if nothing changes drastically.

They were slowly trying to wean her down and were going to see how she does this afternoon.  In the meantime, Brett brought me to the airport and I am currently waiting for the longest flight of my life. It may only be 2 and a half hours but when you are that far away from your baby it seems like a lifetime.

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A long night

Last night as with any night in a hospital with a child was very long. Olivia had bloodwork drawn and it all came back normal. Her ekg, echo, and chest xray were all normal. She spent all night on oxygen and they just turned it off to see how she will do. As many of you know, I am flying back tonight to stay with the kids and go back to work. Brett will stay with her and keep me and everyone as informed as possible. I can't spend much time looking at her because the realization that I won't be with her tomorrow hits home and I start crying. I have been with her for the last 2 and a half months every day. She is one of the three reasons I am here and I wake up every morning. I hope to know something before I fly out because leaving with a huge unknown will make me worry more. Thank you for all the prayers and nice comments. We love hearing from everyone and it helps on the really hard days.

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24 observation

Her ekg looks great and we are still waiting other echo results but due to her drop in feeds and wet diapers, we will be admitted for the next 24 hours to watch her. They don't want us forcing fluids on her. They want to get a real picture of her fluid status. The hard thing is that since er left and are now back, her numbers growth wise look good to them. I expressed my concern due to the fact that she has changed so drastically over the last week.

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Dreaded appointment

Today is the dreaded day of our cardiology appointment. Olivia has been on the steady decline of intake for the last week. Yesterday she only had five wet diapers and the goal was six. We are happy to be here with the right doctors but are afraid she will be directly admitted after her appointment.  There is no denying the numbers anymore. We will keep everyone updated as much as possible.

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We are at the rmh

We got a room at the rmh because they had a last minute check out. This time we are staying in the Harley Davidson room. We called the cardiology fellow when we got here because her intake has dropped even lower. They said our cardiologist had warned them about us flying in town. They also weren't concerned as long as she is having wet diapers and is taking in some fluids. So now we wait until Monday unless something changes.

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