Three weeks ....

I can't believe it's been three weeks since our sweet princess passed away.  It feels like a million years since I last snuggled with her or touched her little face.  If this is how horrible three weeks is, I can't imagine the rest of my life.  :( 

I miss you so much, sweet girl.  I have never been anything more incredible than your Mommy. 

October 16, 2003 to April 16, 2012

This is the post I have never, ever wanted to write. 

Thank you all for loving my Peanut.

Waiting, cuddling, crying, loving

That is what we are doing right now.  Emily's fluids have been turned off and she is getting a lot of medications to keep her comfortable.  All we can do now is wait, cuddle, cry, and love.  And we are doing all those things. 

Please pray for her to be peaceful, comfortable, not afraid, and for her to know how much we truly, truly love her.  Our Princess. 

Weekend pictures

(Me and my girl)

We went to my Grandma's house yesterday.  We took lunch and an Easter basket, and had a good time.  Emily slept most of the time, like she does daily now, but she did wake up a bit to smile at my Grandma and Aunt, before going back to sleep.  She was very uncomfortable in the car on the way home though.  The drive is about 90 minutes each way.  Needless to say, we will not be taking any more trips for a while.  The pictures with my Emily and her great-grandma and aunt are priceless. 

Last night I went out to dinner with three special mama friends, whose beautiful kids are similar to Emily medically.  We had a good time, although the feeling of guilt was heavy on me.  I know going out and trying to relax a bit is good for me, but it is hard not to feel guilty about giving up any time at home with Emily.

(Jacob, wearing the Easter Bunny mask from our cake)

This morning, our house filled with love.  My parents, my in-laws, my sister and her daughter, my sister-in-law and her son, and then some good friends.  We had a ton of food, and laughs, and relaxing.  Emily managed to be awake about an hour, and gave some great smiles during that time. 

(My parents and kiddos)

She is clearly uncomfortable most of the time she is awake, and gets a lot of medications around the clock.  I don't know how much she weighs now, but she is getting more bloated by the day.  She has some other weird symptoms that I am sure are to be expected at this point. 

Tomorrow morning will be the hardest so far.  While Jacob goes out to breakfast with my in-laws, the hospice nurse is coming to do our official intake.  We will be making the DNR formal and inquiring about what medical things we can stop.  I have already stopped some drugs and daily procedures that are not necessary.  Things she hates the most, I am not going to do anymore.  Then the day will get harder, as we have a 3:00 appointment at the funeral home and cemetery.

Please pray for Emily's comfort, and also for strength for us.  This is incredibly exhausting and heart-breaking.  We are soaking in every minute of Emily as we can, and trying to remember to eat/shower/sleep in between. 

It's tough to type this update ....

Emily is home from the hospital, and we are here to stay.  She has appointments with three of her doctors on Wednesday, and I have a phone call in to her hospice team.  We are making the switch formally to hospice at this time and will be doing whatever is necessary to keep her comfortable at home now.  She is on a lot of medications and mostly sleeps all day.  She wants to be held, and doesn't want to be alone.  This is not a hardship as we want to do nothing more than hold her and cuddle with her and sit in the recliner all day with her on our laps.

Today we are meeting with a therapist to talk about how to tell Jacob this news.  He is a very smart kid, and I am sure he already knows she is dying.  The therapist is going to help Alex and I through our grief, and give us advice and suggestions on how to talk to Jacob about it.  We will be bringing Jacob to her as well soon, as he already knows her and feels comfortable with her. 

We will be talking with the doctors on Wednesday about putting a DNR in place.  We are going to make arrangements with the funeral home and cemetery soon so that everything is in place when we need it.

If you are a local friend, please let me know if you would like to come over.  I would like everyone who wants a chance to see Emily to have time to do so.  Also know that just because we switch to hospice and make arrangements, does not mean we have any idea how long we have.  She could have weeks or more left, but we need to be ready now.  As we raise medication doses and frequencies to keep up with her discomfort, we get closer to the point where her body gives in.  We have no time frame and no expectations.  All we want to do at this point is love on our girl and let everyone else who loves her have the same opportunity.

Day by day (and stupid blog problems)

Things here change daily, and even sometimes ultiple times a day. Keeping Emily calm and comfortable is proving hard to do. She ended up having a reaction to morphine, which we thought might happen. We have added meds, changed meds, increased meds. She is happy at the moment, which is awesome. My blog is all messed up. It has something to do with the person who I paid to create the design and layout. Being in the hospital, I can't really work on it much so it will have a very basic design for now. Thanks for checking in on us!

Rough days

Emily has had two very rough days in a row. Emily has had a ton of coughing/gagging episodes that go on and on for hours. We have tried all her PRN meds and nothing helps. The only thing that helps a little is giving her some heavy narcotics to sort of knock her out. Mthere was a big team meeting last night about Emily. GI tells me the episodes are pulmonology, pulmonology tells me they are GI. I don't care what they are, or whose field they are, but she is miserable. It's not okay. Thankfully the Comfort Care Palliative Team here is amazing and standing p for Emily's comfort. Me are starting her on morphine for these episodes today. She has had an adverse reaction to morphine before, but it was 6 years ago. We are going to try a tiny dose first and see how she does. They are asking us some heavy questions. How far do we want them to go with her. What do we want if she codes. If she stops breathing. If her heart stops. If she needs a ventilator. It is surreal. Parents shouldn't have to answer questions like this about their 8 year olds. :(. Please keep Emily, and our family, in your thoughts.