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PrestigeWombat1266 karma

Wife here!!

If you would like our 501 C 3 determination letter or picture proof of my office I will be happy to post it!

PrestigeWombat962 karma

These are the items we let parents pick from for their boxes. They can choose every item or just one. It's up to them. Our goal is to relieve the burden so we don't want to make them have extra junk in their house that they need.

Every single one of these items was recommended to ME by our homehealth nurses when lily was still here earthside. We then discussed with many other home health nurses, as well as NICU and PICU nurses to make sure we had every possible item we could think of that aids in the organization.

LABEL MAKER: to labeling organizers, whiteboard, and supplies. Having clear labels that are easy to read are incredibly important in emergency situations.

CLOCK: to help nurses and parents accurately chart without searching on a watch or phone. This was crucial for us with Lily's seizures. That way our nurses could time without any issues or delays.

WHITEBOARD: to keep track of important information for nurses, doctors, and parents. Things like medications, feeds, last stool, last g-tube change, last trach change, their emergency info.

SURGE PROTECTOR: medical supplies need to be grounded to protect the child.

SET OF STRAW BRUSHES: cleans out gtube, trach, and oxygen tubing, as well as syringes. Parents only get so many supplies a month so this helps preserve the items.

BOTTLE WARMER: warms up food for the child, most NICU and PICU are equipped with one. Certain formulas won't go through tubes when they are cold and other children can have aversions to cold liquids going int otheir stomach.

SHOE ORGANIZER: hanging door organizer to organize all the supplies the child will have; gauzes, tubing, syringes, etc. This is a designated space for the child's supplies.

SET OF CORD WRAPS: to organize the different cords that the child will have. This helps keep them from getting tangled. Especially if you have really long oxygen tubing.

FILE FOLDER WALL ORGANIZER: keeps medical documents and important documents organized.

GRASS DRYING RACK: a designated space for the family to dry child's supplies. We want to make sure that the child's items are in a place that is sanitary just for them. this is incredibly important for the child's health.

BOTTLE BRUSH: cleans larger areas that the straw brushes can't.

GTUBE FEEDING BRUSH: for children who have g-tubes; these are great for cleaning out their gtube connectors as they get incredibly sticky and sometimes clogged. This helps prolong the life of the connect. It is more flexible than the straw brush cleaners.

PrestigeWombat470 karma

I think something that I want to share that most are unaware of is, that she knew. She knew and she looked at me for permission.

At first, we didn't understand that what was happening was the end. That she was dying. We originally thought she was just struggling with her breathing. But then I suctioned blood from her throat and I instantly though "oh shit, this is it" I looked lily in the eyes and even though she was blind I could see her looking directly INTO me. As if she was asking me if it was her time if she could go. I looked down and saw that her raised birthmark was no longer bright red, but black. At that moment every suspicion was confirmed, this was the end and she was dying.

Joey and I had expressed intense want to have our last moments with her be as peaceful as possible. And I am forever grateful we got those moments. We stopped everything invasive that we were doing. We turned her oxygen up as high as possible to make sure she was comfortable and laid her down on her favorite side so she could just go to sleep comfortably.

Joey and I laid down with her and turned on her jazz music that she loved so intensely and I told her " It's ok baby, you can go be with Jesus, it's ok" and then I prayed. I cried and prayed. I asked God to take her quickly and peacefully. I asked for her to finally be a rest and whole. And he did.

Joey, Piper (our dog) and I laid with her for the 30 minutes as her body systematically shut down and I listened as her heartbeat slower and slower until it finally stopped. And then I just held her. I held her chest to chest. I never got to do that with her before because it was too uncomfortable for her. I held her for an hour until our family started arriving.

That hour of holding her is forever ingrained in my brain.

The phone call I made to my dad to ask him if he was on his way and then having to tell him she was gone and then hearing his sob in the background, is forever seared in my brain. To this day it's one of the most distinct flashbacks I have of that moment.

The look in lily's eyes that she gave me before we all realized what was going on, is forever seared in my brain.

but I wouldn't trade or get rid of any of those moments because their moments of and with lily and I never want to forget anything we have with her.

PrestigeWombat337 karma

What it's like to live with the thoughts in your head of watching your child die. No one asks how bad my PTSD is. No one asks if I remember that day. no one asks if I'm ok with how it went down. No one asks if I'm even doing OK. they ask about lily and her life and how I coped with that. they ask about my living child. but no one talks about her death unless it's a loss parent in our rare disease group.

PrestigeWombat277 karma

Hey there Sunshine!

Oh wow that is a really good question. Joey and I have talked about this constantly, we never want to make her feel pressured into being involved but we would love to make sure she knows what we do and why we do it. We worry about making her feel forced to fall into certain shoes. So the decision will always be hers if she wants to be involved or not. The same goes for the other organizations that we participate in. We want to make sure she gets to live her own life and never feel like she was lily's replacement or that we expect her to be extremely involved in the rare disease community, the nonprofit community, or the deafblind community.