Chapter Close?

It happened so fast. Her little body just changed almost instantaneously. We knew it was coming... minutes...hours.. maybe a few days tops. My birthday this year was celebrated at the hospice house while I held Adalynne and her limp body.  Holding her was like a flashback to her birth... cold, purple, and limp. Her breaths were so spaced out I had to stop using her breathing alarm or it would constantly go off. They told me this would happen. I knew all the steps leading up to... but it still hurt. Still scared me. I just wanted her comfortable and at peace. But I'll miss holding her every day. Our final day was probably the most beautiful day together. She slept with gammie all night and did just fine breathing. In the morning she continuously stopped taking a breath... 45 secs to minutes of space between breaths. I scooped her up put her in her stroller and took her out into the sunshine and she started breathing just fine. She "talked" to me all day when I would speak to her. We spent the whole morning and afternoon outside.  Anytime we would put her in the shade she would stop breathing. The second the sunshine hit her bare little ribcage she would take the biggest breath and sigh the sweetest relief. Eventually her and I went into one of the sunrooms at KBR and I opened the doors so she would hear the wind and she slept.... so peacefully.. I just watched her little chest rise and fall.. rise and fall.. the rhythm that kept me going for these past 9 months.  Every second watching for another. .. rise and fall... rise and fall... I decided to take her into our room and attempt a nap we had promised each other for a while. Not long after we snuggled up she stopped... no rise and fall... nothing... then she turned purple... I tried everything I had before.  Talking, tickles, wet cold cloths,  even sunshine and nothing. She would take a few gasps here and there. Then.. this cough came out of her body and I screamed, I knew it was happening. I was loosing her. My nurse came in and listened to her and I got the same look and sentence the moment she was born.. She has a heatbeat but no breathing.  Sally,  my nurse told me to call my few close ones to start our phonetree. She told me to just hold her... and I did... I cried and cried and held her and told her it was okay and another huge cough exited her frail body and that was it... or so I thought. I started our song to sing to her and she gasped for air.. one last time.  Then she turned the most beautiful color. And her eyes.. oh her big blue eyes that i miss more than anything.. they looked so peaceful.  So free. She looked so beautiful and peaceful. 

I miss my baby.

This is the hardest thing Ill probably ever go through in my life. Im so thankful for all my friends who came to see us at KBR. The funeral was so beautiful.  I am so proud of everyone involved. I honestly expected a far bigger turnout. I was hurt to not see some of my"friends" there... when things get rough in life we must remember the ones who were there. Yes. Social media is great and I love having that for my family far away. But the people who give up work to stay with you while you cry. Or take you to shop after shop trying on outfit after outfit because I wanted something specific and beautiful for our day. Those are the people I will remember.  The ones I looked at during my speech sitting alone or drove or flew from out of state to be there for me. The hole in my heart is now being replaced by these memories of true love and friendship. I will forever be grateful to experience some of this countys most beautiful people and to have them as part my family.

Chapter pause

Hello wonderful people. I've actually missed writing. Its been a over week since we moved into the hospice house. Roller coaster junkies, come live my life for this past week. Last weekend was spent with basically every 20-30 minutes Adalynne would just stop breathing. Before, we could stimulate her with things like a cold baby wipe or tickles and talking. Now, nada. Most of my tricks don't work anymore and honestly I stopped trying to keep her going once I watched her die. It was perfect. Me, Mom, Aunt Jess and Aunt Karli all with her. Singing our song to her. Letting her drift off peacefully into her next chapter. But sikeee. She started breathing again after the longest minutes of my life. We went through this over and over and over. Holding her, telling her it was okay to go. I was so scared those few days of this ride. I wasn't ready but I am now. I was numb for the first part of this week while she got better. Everyone around me was getting excited seeing her open her eyes and eat again. Thinking we could go home. I thought I wanted to go home, to have her in our home when she passed. I don't anymore. I don't want her to die in my bed. I love this place. Its so beautiful and it inspires my soul. No one will understand until you've seen it. I like having a nurse here for when I need someone. This time here makes me very happy and proud to have done the first 9 months on my own everyday and night. I was nervous about coming here and thought I would hate it. But I don't. I'm forever grateful to hospice. Without these amazing people I would simply not be able to do this. I've met some of the most amazing nurses through hospice. There is few I hope to continue to see after my chapter closes with this group. I know they will take care of my baby. When she leaves my arms for the last time I want a hospice nurse to take her. As long as I see her leave with them....I'll be okay. We will be okay. All of us.
Her episodes have gotten shorter but now they are just seizures that happen extremely too often. She still continues to stop breathing for extended periods of time. We are just in a waiting game. Waiting for her body to fail completely and her soul to be set free. I can't wait for that moment for her. Pain free. Goodness my heart longs for her to not be in pain or have seizures over and over again. Its so hard watching her go through this. But she still fights. For me, or you all, or herself, I don't know anymore. Adalynne Marcella, my noble beautiful young warrior you have fought a good fight sweet baby. I'm so incredibly proud of you and thank you for letting me be your mommy. I'll continue to update on Facebook with serious changes and write on here when I can.
Thank you to everyone who has loved and supported us. Your messages and comment have and never will be taken lightly. I read and reread some of them when I need to. We love you all.

Hello goodbyes

Hello all you beautiful souls. Today our warrior turned 9months old! We had a beautiful photoshoot with our amazing friend Deborah. We love you so, so much.  Also spent about the entire day in an episode. Our days are now consisting our sleeping or long exhausting breathing episodes. Adalynne doesn't eat much at all anymore and has lost 2 pounds already...yes the ones I cried over gaining... Her little vessel is failing and her breathing machine goes off more and more often. That scary moment happened when the loud alarm went off. I have been waiting for this... Thinking of how much I would panic. But I didn't. I walked in and stroked her cheek right as she took a breath. We are ready. Call me crazy but we've talked about this. She's almost ready to go. I'm grasping this is happening quickly. I think my anxiety is less about loosing her and more about not being prepared. Or maybe its both... Who knows. My close friends have begun our goodbye visits and family is coming up... I meet with the funeral home on Sunday.... Hopefully we make it. I'm sitting her looking at her peacefully sleep and this beautiful room I have created for us and I feel.... Sadness currently. It changes throughout our days. But, I must focus on the positive for us. This beautiful journey of Miss Adalynne Marcella. She has touched so many people and changed so many lives. I'm very proud of my warrior. Someone asked me the other day if I ever wished I could change things. My answer is no. Nothing would be how is it if things hadn't happened the way they did. We have been able to give love and inspire so many. And after, we get to help other babies live beautiful lives. She daughter has had a life full of love and care. Exactly what I had hoped and strived for. But damn... I'm going to miss her beautiful face so much. Not sure how much longer she can fight and I'm not sure how much longer I can watch her suffer. My heart will always find peace knowing she will no longer be in pain and dancing with her great grandmother.

Anyone who would like to visit please let me know and I will see what we can workout. Please continue to send strength and love our way.

As always, much love to all of you loving souls.

Horrible luck Heather

Hello all. We have been so incredibly busy recently. I bought a car!!! And then it broke down..... Hopefully will be fixed by Monday. (Fingers crossed) Also, I broke my phone by dropping it in my cup that had literally less than an inch of water in it. I'm using a friends old one and it takes the worst pictures and randomly shuts down whatever app I'm using.....oh the joy! Adalynne is over 12 lbs now and almost 9months old.... Like woah, time has flew by.  Over the past month things started off excellent! Like so good I thought (maybe we will make it to a year).. I should've known better. A few weeks ago things started to downfall. And we both are dealing with the typical allergies that come around this time of year. Feedings have became less and less and episodes have increased. For the past few days she refuses to keep formula down. Doesn't matter how much she has eventually she will throw it alllll up, all over everything. Have I said I hate laundry? Adalynne is sleeping more and more... I found myself waving some of my cinnamon roll in her face to attempt to wake her up this morning. Because, who doesn't want to be woken to the smell and deliciousness of a warm fresh cinnamon roll? It didn't work.... She wined at me and then....went into an episode. And I cried and told her "I'm sorry babe but you haven't ate hardly at all I had to try"  sucks but its the truth. She gags at most things now. Except tomato soup which I found out yesterday she loves. Or maybe its because it was in my bowl and moms plate is always better than the kids. Either way, she ate it AND keep it down.Then I mixed it with mashed potatoes and she loved that too. She keeps this up I'll mix her formula in the tomato soup! Hahahaha. We make our own rules and I've gotten into the happy place of acceptance. Yep, my baby makes weird noises and people stare at me and say mean things. I laugh at them. Three seconds of looking at her and BAM you're in love. Haha She is really a beautiful human and soul. Some days things still get me. I can't look down the barbie aisle without tearing up. And the stupid baby yogurt company makes me so mad I yelled profanity at the boxes of yogurt... You can't have stages like sitting, crawling, and walking. We will never do any of those three things. So OBVIOUSLY Adalynne is wayyyy too cool for them. I won't waste my money on companies that exclude us... I'm still salty if you guys can't tell!
Besides for her decline in health I've started becoming overwhelmed. And I have to take a moment to thank a few people. Besides my family who fight with me and love us. Jessica and Angel have been my rocks. Like big huge fucking boulders for me to lay and cry on. They both know when I'm getting to that point where my brave face paint is wearing off and my sleep deprived brain is fried. I love you both and thank you for always being here and telling me its okay to not be strong every second. I couldn't get through each day with you both and all my other friends who check in on us and keep me going. We love you all so much. And thank you all for keeping up with us and sending us love.

Much love to all the beautiful souls out there reading this. Until next time. <3 <3 <3

Oh yeah!!!!! She cut her first tooth!!!!!!!!!!!! And we hate teething! Weeeeee!

Nap time

Today, Adalynne and I fell asleep together for the first time in a loong time. I don't let her sleep much outside of her craddle because it has her breathing sensor. Well I woke up and she was, and still is sleeping. I realized she needed her diaper changed so I begun to slowly change her to try to not wake her up. Before I say much more let me preface this for those who dont know. Adalynne never smiles or shows any emotion. Also her tiny 10 lb body is almost never relaxed. Even in her sleep her muscles are still so tight and tense to where I have to pull her legs straight and massage her muscles. Its rare that I have a time like today. So, today. My child smiled at me in her sleep while I talked softly to her. She is so relaxed I can pick up her little leg and it moves like melted butter. Her arms fall freely above her head and to the side of her body. I can touch her and move her and she stays asleep instead of jolting and waking. I am in shock. This never happens and my mommabear heart is so full its spilling over in happy tears.
Goodness I have fallen so madly in love with her. Today, may not have been the best eating day since shes only eaten once but we had a wonderful snow day of cuddles and sleeping in mommys bed( I let her sleep in my bed this morning as well after her episode this morning.) I'm sure to most thats not a big deal but it is for us. I get so happy when she has sleep like this.

I love you all. Thank for keeping up with our journey. Have a beautiful snuggle filled nig