Scarlet update

I didnt hear from Rachel for a couple days and I got worried. I texted her but didnt hear back for a while. She eventually told me that Scarlet had a bad day on tuesday, but things are better now. On tuesday, she stopped breathing quite a bit and they had to fight the doctors to put oxygen back on her. Rachel told me that her and her husband had let it be known that they did not want to put Scarlet through any invasive treatments, because of her diagnosis. They told the doctors if it would cause her to be in pain and suffer more, and probably wouldnt help her, then they didnt want to do it. Like surgery and the like. But oxygen doesnt hurt her, so they wanted her put back on it. She was having issues with apnea. Scarlet takes very shallow breaths, and her oxygen levels drop down quite low at times. The doctors resisted putting her back on oxygen because of her diagnosis, Rachel said. She said its been tough to find a ballance with the medical staff when determining "interventions" and improving her chances or quality of life. Rachel sounds like she is facing the reality of her baby’s diagnosis more so now than before Tuesday’s troubles. She is upset that they are having to fight the medical staff to help the baby, but its hard to draw that line between futile, pointless interventions, and stuff that could easilly help her. Its a fine line for anyone to draw and as a mother, i believe rachel knows whats best, and whats too much. She will know deep inside her heart when they are near that edge. She will know when to stop trying to save her. But we are nowhere near that edge yet.

The baby is being discharged tomorrow. They are taking her home to Tally, and hospice will be there with them in their home. Its my understanding that hospice provides services for 6 months. I dont know if this is an indicator of what the doctors expect for Scarlet, but I certainly hope not.

Rachel and her husband havent been home in almost a month. They went to stay with her parents before the induction, then were in tampa general for about a week, then rachel was discharged and they stayed at someone elses house in tampa, close to the hospital, and have been there ever since because the baby has been in the hospital this whole time. They spend the day at tampa general then go to this house 5min away to sleep at night, then go back to the hospital. she is so excited to go home to her own place! She seemed a little peeved that hospice would be there to "help with the medical stuff" even though the staff taught her and her husband how to do everything already. She is a know it all just like I am- and she resents anyone thinking she doesnt know how to care for her own baby. But this type of care isnt the normal newborn care that Im SURE she could handle on her own. She is sort of thinking in that way, still, i think. Its got to be impossible to wrap your mind around this new reality–that you are caring for a sick baby, not the normal healthy baby you were planning on and expecting. This is a while new ball game that you couldnt ever be prepared for.

I think about her all the time, though now im starting to feel creapy for writing all this and thinking about her so much and we’re 2-3 hours away from each other. I cant stop thinking about them. Its just heartbreaking and impossible to imagine. I think a lot about how CRAZY INSANE bringing home a new baby was for me. Not just then, but now and always. Becoming a new mom, FOR ME, has been such a crazy journey. So intense. INTENSE in every way. Truth be told, i am far from the person i used to be. Being Lucy’s mom is all consuming. Not in a bad way- im just saying. I think about Lucy first and foremost. She is my everything. Im not saying that when im gone at school all day, that i think of her and cant focus. No- I have many roles in my life. But Lucy is the center of my universe and there is no denying how much she rocked my world. Now times that by 10, having a sick baby like Scarlet. WHAT ELSE COULD YOU DO OR THINK ABOUT, when you have this tiny being in your home, that could honestly, if im being frank- leave your world at any moment? I mean, i think thats realistic…..sounds so harsh but i really think thats her reality…..its unbarable to me. I would lose myself completely. I lost myself at times in Lucy and she is healthy. I just dont know how I would resurface after going through what Rachel is. I sound pretty weak. And I know Rachel is strong. And you never know how you would handle something until it happens to you. But this whole thing has got me thinking, thats for sure.

God bless Rachel and her family!