365 days since we’ve said goodbye...

I am not quite sure where time has gone. Where the last 365 days have gone since we’ve held, loved on physically and lived with our sweet girl at home. She’s now in Gods home. This thing called life, this circle they say, how does one keep one foot in front of another when a part of you is called to Gods home before we are? How do you find joy in days when such a big part of your heart is broken? It’s something we wrestle with daily. DAILY. We try to be gentle with our hearts but some days the pain is physical and the heart hurts so bad, and the tears feel like fire down our cheeks. And throw the holidays in the mix, we still go about our days longing for you, and praying we feel you near.

We never thought we would ever live life without our sweet big girl. Our life was her, for 10 + years. We GOT to give her life. Show her the world as that’s what parents are supposed to do right. Love on her, watch her learn and grow and thrive and flourish into this big beautiful butterfly princess that we always believed her to be. Danielle Marie, the sweetest smile, the brightest eyes that told such a story even if you only caught her glance for a moment, her voice and giggle. I longed for the day where I would hear her say, ‘ I love you Mommy’, or ‘I love you Daddy’. While we will long for those days to hear those words for the rest of our life, and they won’t happen, what we did get from our sweet girl was love in so many more forms than words can convey. She trusted us to give her the best of the best, and we did. While we firmly believe she knew from day one mommy and daddy would go to all the ends of the earth for her we were careful. No words were shared like that around our girl, because we didn’t want her to ever know that anyone placed limits on her. Zero negative conversations were had around her ever. Not in the nicu and not in her final days on earth. We believe she knew our faithfulness as parents in our actions. In our cares, the way she would put her head under my neck and nestle in and feel my calm heart beat with hers. She trusted us at every appt, at every surgery, at every consult when we told her, you got this big girl, we are so proud of you, keep fighting sweetie.
But then there came a time where her fight started to fade. And you so badly want to see it as you always have, and then you realize God had other plans.

Yet there are also things I really beat myself up over. Like when I was in labor with her, less than 12 hours after having my cervix checked and being told I was fine, yet calling into the doctor and then dismissing my labor pains. I regret when I started having contractions not having Brad drive me right to the university even with contractions less than 5 minutes apart. I know big girl that we did everything, EVERYTHING, yet the more time has gone on and for 10 years I relieved my pregnancy over and over in my mind I wish we would have sought a mfm. The mind can still get the best of us. The darkness creeps in because you are not here. I wish we would have known about the TAC that I got with Brinkley as it could have saved you. And while I know that none of these things happened because they weren’t apart of Gods journey for us, it’s still something that mommy wants to go back and fix, because.....what if.😓 

There is no such thing as living the rest of our days without her here. What happens is we live our days as if she’s still here, we just live them differently. Danielle you aren’t here physically sweetie but you are always with us. You’re with us everywhere we go, in everything we do, we pray to you, we talk to you, we talk about you always. Our family activities start with asking each other, what would Danielle want to do if she were here, and we lead our decisions with that, while Dylan then takes it from there. We greet you when we get home and say our 'see ya laters' when we leave the house each day. You taught us so much about life and love and the true meaning of family and unconditional love. You may not have been able to communicate with words but your voice was so loud. You had so much to say in other ways.

There’s no such thing as getting over the loss of a child. There’s no such thing as living your days without them here. How do you just raise this gift that God gave you and then one day when that gift is gone, continue to live on? You don't. We don't. She’s here, tho not physically here, she’s prayerfully and faithfully here. I begged our sweet girl, please show us signs, please show mommy and daddy you are ok. And boy do we believe she is loving every way she shows us the signs she does. She might not have had the physical power here on earth to move her body but boy does she have eternal power now in heaven! And we believe she loves showing us her new angel skills.❤️ The way she makes the house cameras go off in Brinkleys room the minute we tell her we are leaving and exit the room. The way she has wrestled the Christmas tree ornaments from atop the tree down to the very bottom, the butterfly’s that find us in the wind and the rain, the rain drops on the window of the car in the figure of a little girl, the bald eagles that soar above even on the crummiest of days, the dove that appears where no other animals are near on a very cold December day, and so much more. The way Brinkley looks up randomly and waves and says, 'hi sissy'. The feelings that Dylan has when she is near. The dreams she visits us in. They are all so real.

One year ago today you began your walk with Jesus. We believe you’ve been walking with him long before he gave you this life to live with us, and when we look back at all that we got to do we feel pretty darn lucky that he felt we were worthy enough of raising you at all. Thank you lord for this blessing of our daughter.
But the images still haunt us from one year ago today. While you were at peace once god called you home, there was immense struggle before that, and that’s the horrible part that the devil never wants us to forget. But sweetie we believe you didn’t feel any pain, that you were in Gods hands. It’s just something your daddy and I need to keep praying for god to take that pain away. But it’s grief. It’s saddness. It’s this new journey that we are walking. It’s the loneliness of missing you. It’s wandering when we feel like you are somewhere but we just can’t get to you. It’s missing our home filled with nurses that were a part of our family. It’s missing school routines and meetings to give you the best of everything. It’s not spending hours each month at the children’s hospital, instead finding ways to donate our time there and volunteer elsewhere instead. It’s helping your brother find ways to feel comfortable in his new life of living without you by his side, which is all he’s ever known. It’s keeping your memory alive so your baby sister never ever forgets you and knows all about the biggest princess of our house. It’s keeping your memory alive and begging in our prayers that nobody ever forgets you.
We went to the most beautiful ceremony, as a family, for the donor network sweet girl because you blessed so many. It was the most bittersweet moment hearing from those who were able to get help and live on from donors like you big girl. You are such a gift beyond every single meaning of the word.

 But I tell you sweet girl, we went to the cemetery today and found a couple new angels there, and a new butterfly that wasn’t there the other day. I melted down sweet girl, that means others come visit you there when we are away. That means the world to your daddy and I. It means that others are praying to you too! That was the biggest blessing of this very hard day, seeing that some one else stopped to visit because they were missing you too. Mommy received the most beautiful necklace in the mail last week with all you kids names engraved, and no message who it is from so I know who to thank. Whomever sent this gift, my heart is forever grateful. It is beautiful just beautiful.
Daddy brought you and Grammy roses today sweetie. White just as you both liked. I am sure the valleys of heaven are filled with rose fields as far as the eye can see.

We’ve spent the last 2 days away from home. It was too painful to wake up here and relieve every moment of that horrible day one year ago. Instead, we spent our days together in a beautiful place, letting Dylan choose our activities just as you would have wanted to do. And somehow finding the Christmas Spirit for your siblings when really it doesn’t feel right without you here, yet they remind us we still need to find a way to press on and try to do the best we can.

365 days, and countless hours without you in our arms, how can it be.... Without hearing your squeals and feeling your fingers around my neck. I still touch the cheeks of Dylan often as your skin felt exactly like his. Brinkleys hair is now longer and thick like yours and I’m so thankful she lets me run my fingers thru it as I close my eyes and pretend for a moment it’s you again. I walk into your closet for the smell of your clothes. To touch your blankets and extra cozy pj’s and play with your hair pretties. We know you are with your angel brother Dalton too, that does provide some strange peace to our aching hearts, but the constant wonders of what it would be like with all 4 of our babies with us, together on earth, is something we will forever wish for, and long for and wonder. It will be something we will always wish we had. It will be something that this Mommy and Daddy will be the first thing we look for when we are all reunited in Heaven. Having our family together at last.

Danielle please keep guiding us sweet girl. Guide our hearts. Guide our walk with Jesus and please never stop showing you are right here. And this Mommy promises to never ever stop including you sweet girl. You might be physically away from our site but never ever forgotten. Because this mommy and daddy are forever longing to see, feel, touch, smell and snuggle you again.💕~

A moment in time.....

Writing has always brought me comfort. A way that I could share and document every bit of our child's journey, for us, for our children at some point in time where they may want to look back and read their whole story. Unique to them, memorable for us.

I never once thought that maybe my child's story wouldn't be able to be read by her. That the story would end before she was able to read and understand it. And that stinks.

But as I've come to realize, actually we've come to realize, her story began long before our time. God and Danielle had this life planned for her. And we really think that she was ok with it. I don't think today is a day that I'm able to elaborate much on that because today grief has struck me. HARD.

So for a moment I just need to share with the universe how much I miss our girl. God I miss her so much. One would think that when you have the 'blessing' of being able to sort of 'prepare' yourself, knowing that soon life will come to an end, that things would be easier. Nope. Doesn't exist. Easy doesn't exist in the world of losing a child even if you had a zillion years to prepare. I thought when we were going thru this with my Mom that being able to 'prepare' would make it easier for her too. Nope. Easy doesn't exist in the world of losing a parent, even if you had a zillion and one years to prepare.

So we are left with memories. And thank you lord Jesus we have a TON of them. But I selfishly want more. I want more memories. More walks on the beach. More road trips. More dance party's in the living room. More frosting cookies memories. More mornings of walking into her room singing, 'Good morning little peanut, good morning little girl.' and hearing her squeal with delight. More times of her saying 'yeaaaaaa' when I would ask her if she would 'babysit' her little sister for us. More times of going on adventures with her. More times of going to farmers markets and spending days at the pool. More times of my Dad coming to visit and him greeting her saying, 'where is Grandpa's cheerleader at.' More more more. Is that selfish of me? Maybe, because I know, we know, that God called her home when it was her time. But in life we always want more.

We are learning to live more simply. To live our days making memories instead of relishing in things. Things don't matter. Memories do. If I could never purchase another thing in my life, but I could forever make thousands of memories with my kids I'd be ok with that. Danielle will forever be a part of every memory that we will continue to make. It is just sad that she will be with us in a different way. The brightest start in the sky at night. The sunshine that soaks into our body's and shines on our face. The butterfly that appears when we need a reminder of her. Even the caterpillar that appeared in our garage last weekend on a 50 degree day, I believe was heaven sent.

My biggest fear is that our girl will be forgotten. We will never forget her and we don't want you to either. Please forever remember her smile, her infectious smile that even thru 13 brain surgeries, over 130 days in the nicu plus a hundred more days spent in the hospital over the last 6 years, she ALWAYS had a smile. She had a zest for life. And we were BEYOND blessed to be able to be a part of that. TO be her mommy, I tell you was my greatest joy. And I know her Daddy would tell you the same thing too.

So for a moment in time I wish I could just pause, or that I could go back. That I could kiss her one more time, that I could hold her hand and look into her eyes and say Danielle I love you, do you love your Mommy....and have her look back at me with the biggest grin you ever did see. That I could say to her one more time, are you my pretty big girl beautiful butterfly princess...and hear her say 'yeaaaaa' and giggle and smile in true Danielle fashion. For a moment I wish I could watch her and Dylan read one more book together, I wish I could put Brinkley in Danielle's crib one more time for a morning greeting. I miss our home being filled with nurses we loved. I wish for one more time at
7 am that I would hear that garage door close and I could be greeted by a friendly face one more morning. Even Dylan said last week, 'Mom, does it seem weird that we don't get to see nurses any more in the mornings?' I know he misses it too. For a moment in time....

I challenge you today my friend to embrace every moment of your day. Whether those moments are struggles that nobody knows about, or whether those moments are joyous and happy. Embrace this moment god gave you. Do it for you. Be thankful in those moments, remember they are a part of your journey.
And one more thing. Please forever remember this little beauty and pray for her and our family. One more day I will write more of our journey that I don't ever want to forget. Parts of our journey that we kept to ourselves, we will eventually share just so we don't forget the strength we had to have in those moments. But today all I can think about is how much I miss our girl and if I could just have one more moment in time...if I could have one more moment with all of our children together in real life, not just two together in real life and two in pictures. For just one more moment in time I could do our big group hugs and I could kiss all of my babies one right after another as we are all embracing each other. One more moment in time so I could say to her and have her look at me when I tell her I love her and I would forever fight for her. One more moment in time that we could just have our family together....

A Rainy Monday.....

Wrote May 14, 2018
Its Monday, a new week, another worry :-(
Yesterday was Mothers Day. a rainy day in both our emotional world and our physical world. Our morning with Danielle started ok. She made me the most beautiful picture card, complete with handprints as flowers. My heart melted. I secretly had been wanting something with her handprint on it, and had often thought about taking her to the kitchen table to draw hers out. Then her nurse did it for me.

It is like God is popping up everywhere and saying, 'I got you covered! And has crazy as that sounds, I don't really need for anyone to understand other than Brad and I. I am sure it sounds crazy if you aren't as strong in your faith. But it provides me more comfort than I can even explain. Since the day was rainy we didn't have any outdoor plans except Dylan had a football game scheduled. The late morning offered some relief so Dylan went outside to play with his friends, Brinkley took a nap, Danielle was laying on the floor quietly watching a movie and Brad and I came into our bedroom, vented to each other and cried.
We have so many fears. So many concerns. So many feelings of how can we live with out this part of our family when God calls her home. It seemed too much to handle. In having been thru a similar situation with my Mom just a short under 4 years ago, I think I'm familiar, I think I am prepared and feel like its my job to share that with my husband. But this could be so different, or so similar. I just don't know how to prep him, that sounds TERRIBLE. Prep him for the death of your child, what in the world! But I guess for me maybe it makes it not as scary, but it was scary, uh my emotions are all over the place.
Brad and I went thru a zillion feelings in our minds, a zillion different circumstances, but we both decided that ultimately all of our feelings stem back to wanting to protect our family. Protect Dylan from seeing something that he should never ever see, protect Brinkley like what if she needs a bottle in the middle of a scary situation with Danielle, does she just lay there and scream, how do we handle that? And then most of all Danielle, we want her comfortable, we want her to know we are there and not ever leaving her side thru this, we want her to know unconditional love and support and to feel her mommy and daddy when she needs us the most. She's continued to be tearful at times, I've taken some pictures but the smiles in the pics are because I made a silly noise to get her to smile. She's good at fooling people and putting that smile on her face when she is hurting. I admire her so much.
We've continued to give meds to keep her comfortable. But yesterday we noticed those meds didn't work as well. But last night she slept well without them.

This journey is confusing. Its mostly really sad. Its scary. And my eyes are foggy today. We are home with our girl. Daddy is taking amazing care of her while I'm at work for a few hours. We've yelled a few times, that didn't make us feel good. We have cried a lot. And we have tried to smile when we are all together. We don't want Dylan to know what is going on, and we keep it all from him and everyone else. We hope people understand as they read this, later, why that is. I guess nobody needs to understand. I remember my Mom telling me that. She didn't want anyone to know her condition, she wanted peace, and that is exactly what we want for our girl. But last night before bed Dylan cried, he didn't know why, I don't know why, the conversations we had were when he was outside, but he isn't stupid. The mood in our house yesterday, on Mothers Day was somber. He must have felt that. That breaks my heart. Today we meet with the hospice doctor for direction.

I don't know what a moment from now or even a day from now holds. I know this moment we are ok. I know our girl is putting up one hell of a fight. I know that we will put smiles on our faces for our family and melt down in each others arms at night. And that is ok.
My FB memory from today, 3 years ago was this.......if this isn't God talking to us, I don't know what it is. God I trust you and we really need you.

It’s been so long...

May 12, 2018
it’s been so long since we’ve updated about our girl and now isn’t the time, but these feelings must be wrote down, a release.
Today was hard. One day before mother’s day, a few hours away, i was torn all day. Sickness in the house, everyone exhausted, trying to hold it together. While at the doctor with a sick baby the phone rings, a worried daddy, hurry home, it’s happening...words i knew what they meant. Stuck in traffic on First ave, trying to get to Dunkin to buy a coffee, i quickly veered and weaved thru traffic i needed to get home. A text sent to my dad, we might need help. Panic but then calmness. I drove right by the cemetery, most view that as a place of sadness, afterall souls don’t live there, only physical remains do. But not for me, it’s comfort to be near physically to all those i love and miss especially my baby and my mama.
Before i got home the call came back, she was more stable, my heart had already stopped racing. It was ok. No need for coffee, it didn’t sound good, i just wanted to touch my girl. The rest of the aft was chaos, trying to keep our son comfortable and not worried, keep the Baby comfortable and away and mostly to keep our peanut comfortable and settled. We have those meds we have on hand for situations like this, i made the decision to call the on call hospice help line because we didn’t know what to expect and if we needed them i needed to know they had some background on our day. The tears flowed. Wow, this is our reality. Brad said, this sucks, it’s like we are living a secret life, a secret society. It’s true. We are. Much like the nicu, a world full of unknowns, but this world a child in hospice,we don’t know when the unknown will come.
The rest of the day was rough. She fussed so I’d hold her and get Her comfy then she needed to cough so she’d go on the floor, then she’d fuss and daddy would hold her. She’s sad and that breaks me. She knows what’s going on. As much as we don’t talk about it around her, we have kept the world closed off to this because we need to protect her, it’s her, she knows. This is when my prayer comes in, god i need you. I need you to protect my girl, i need you to hold her and let her know she’s loved, comfort her and give us all the strength to exceed anything she needs, we want the best of the best of the best for her, now and forever to eternal life. The baby is tucked in her bed, Dylan is tucked in his, and now we take turns holding our sweet girl. What will the next hours entail, what will tomorrow bring, i do not know. We are lonely, we are scared, we are sad, yet we feel so blessed she is ours and boy are we ever proud of her. There’s so much going on around us, yet we are here with our wheels spinning, digging into the ground going know where but to somewhere we are unfamiliar. What will this look like for us, it doesn’t matter, this secret society as lonely as it is today, we have each other and in this moment we get to hold our girl and all of our babies, except dalton, and holding her, playing with her hair, that is what matters. Lord will you please hold us too too...?

One week ago today...

One week ago today my sweet big girl, you earned your angel wings. At 8:26am the exact same time that God called your Grammy home, he called you too. I miss you sweetie my darling little peanut. Mommy can’t find more words than tears right now. But soon my daughter I will. I just want you back.💔

Our eulogy to you.

June 27, 2008 one of the scariest days of our life yet the most beautiful. Our daughter Danielle marie was born. Her birth was scary, it didn't come without risk, we were told immediately our life with her would be different. We knew and understood and to us it didn't matter the level of care she would need, the sleepless nights we would endure, the level of heart ache we would feel watching her go thru life, all that mattered in that moment was that we got a chance with her. Thru out the course of her NICU stay we began to learn a little bit about the damage to her brain that was done. We had hard meetings and tough conversations, we were asked if we wanted to continue on, to us it was whatever she needed whenever she needed that is what we would do. It was our vow to her to go from all ends of the earth to provide the care Danielle needed no matter the cost, day, time needed or where we needed to go to find it. She was our daughter and God blessed us with her. 

Over the next 10 years our life with Danielle was so grand. From her infant ages she came home on oxygen, had a couple of surgeries, but her lungs were pretty good. We had some illness but nothing that she didn't fight thru and overcome. She began her life with her devoted brother. Early mornings watching Disney junior, laying on the living room floor with toys around galore, she enjoyed looking around and just being around family. Snuggles were her favorite and so what sleep! What a gift! 12 hours a night, seldom a cry, ate bottles for only mommy for the first year of her life but loved bath time with daddy. We began therapies with Danielle to try and loosen up her body. By the time Danielle was 3 we had her in therapy 3 days a week, sometimes more. We began researching equipment and truly trying to find out the best way to maximize Danielle's potential. We had OT, PT, Speech, Feeding Therapy, Music and Vision Therapy, and we hand picked every single member of her medical team, if they didn't fit our mould and our vision, we quietly kept searching for someone new. When Danielle was 4 we met the most amazing therapist that began talking to us about school for Danielle. What that would look like, where she would go. I would take Danielle to meet with Nicole a couple days a week in Springville and in the course of time we began to discover that this little girl with the most beautiful green eyes was just full of information she wanted to share. It was time for her to go to preschool. We open enrolled her to Linn Mar Little Lions and that is truly where her journey into communication began. Brad and I longed for the days where we would her I love you Daddy, or Mommy play with me. We never got that, but what we did get was so much more. The part of a non verbal child that you do get is expression, her eyes told us a story, soon sounds began to come and when she started kindergarten with Mrs. E at Indian Creek she began to respond to us. She began to say 'yea' when we asked a question. It was there with her teacher and support system that our every day connection with Danielle was maximized. She began to make choices and read and learn to write and I know in a minute Chelsie will tell you more. 

When Danielle got to school another part of her needs changed. She needed yet another brain surgery. This time it was positive, it could mean she had the opportunity to walk! How amazing would that be! It also opened the door for in home care. She needed that more than we even knew. We weren't sure what it would be like with our home open to people we didn't know from 7a-5p 5 days a week, but what we soon came to realize were all of these angels among us. Over the course of 5+ years we had somewhere of probably 30 or so people in and out connecting with Danielle. Caring for her every day needs when we were at work, those that went to school with her, therapy with her, came for snuggles on the good days and held her and helped calm her on the hardest of days. Days after surgery when she was in a cast for 6 weeks from the waist down. Days after her 13 brain surgeries when she couldn't have any stimulation, and sometimes the nurses had to literally sit in the dark with the tv almost muted. It takes a very strong person to be able to come in and care for a child that needs so much care. Brad and I also realized how strong we had become to be able to break our own emotional walls down to have people in our shared space also. This was a new normal for Dylan. Every morning at 7am he knew who was coming for the day. 

Over Danielle's life we were able to make many amazing memories with her. Vacations began for her when she was just 13 months old. Her first trip was a marathon road trip with just Dylan and I to Pennsylvania. We also traveled several times to Arizona a couple times of year where my mom was having her cancer treatment. Grammy was such a gift to Danielle and vice versa. They sure had a connection unlike any other. Danielle went to Florida, to Wisconsin, Minnesota, family trips, friend trips, memories made all over the US. We were not going to limit our daughter, we took her every single place we could. The first trip we flew with her meant carrying on an oxygen concentrator, Our amazing world class neurosurgeon actually called a contact out the Phoenix Childrens hospital and gave some of Danielle's information in case we had an emergency while we were there. I am not kidding when I say that God placed the most amazing people in our life. But the most memorable trip for Danielle was by far in June 2016, when her wish was granted and our family was gifted a trip to Hawaii. Little did we know that would be the last trip Danielle was ever able to take. We had so many concerns, of course the 6 hour flight but what if something happened while we were there. Well Jesus took the wheel on that one because it was nothing shy of perfection. Everything Danielle longed for she was able to do. Her and I got a massage. She got to swim with the dolphins and go to a luau and see animals and feel the beach beneath her feet and swim in the ocean. It was a week in paradise with our warrior little girl. 

I could talk to you for days and weeks and probably months about the amazing child Danielle was. But what I really want you to know in all of this is how much she truly impacted our life. She wasn't just our child, our daughter, she was our angel. She taught us more about life than we even knew was possible. She taught us that love has no limits. She taught us that sometimes there is sunshine in the rain. She taught us and showed us to keep pushing, keep trying new things, she taught us that Miralces do come true. They do. Miracles happen to those who believe. And our life with Danielle, 10 amazing years was nothing shy of a miracle. Her siblings love her fiercly. Her brother was her protector, he did anything for his little sister. She was our peanut. At just 20 months apart he only knows his life with her. Brinkley then came along and she was just the sand that fit thru the cracks that we didn't know existed. She pulled us all even closer together. Danielle adored her baby sis, she loved when we would put Brinkley on the floor next to her and she would babysit her for us. Her eyes would light up! Her smile would be from cheek to cheek. Her voice would get high pitched and there were belly giggles in there too. 

All of these things about Danielle we already miss so much. We knew our time with her was limited but we didn't know when. The last months with Danielle were hard. We made every single additional memory we could cram in. She was baptized in our home, she received her first communion in our home. Deacon Ed at All Saints would come and pray over us whenever we needed. And of course all of our nurses, daily visits and weekly visits by others. Christina was a blessing to our family for 5 years. Kasey came into our life with Danielle these last few months, and Andrea would check in 1-3 days a week. Not to mention over the years the countless number of special people who took care of her. 

Our life will be different now. Our life will be much quieter now and we are not ready for that. The last year or so Brad spent roughly 5 hours a day just doing feedings and cares for his little girl. Getting up at 430 am so she was set when nurses arrived. She leaves an immense void in our home. But what we have to remember is that now she is free. She lived an amazing life, one that statistically had limits, but we showed her no limits and she did not limit herself. 

Will you please do our family a favor in memory of Danielle? Please share love in all of your days. Life is too short to be angry or sad. Find the beauty in everything around you. And please always remember her smile, her zest for life and now when you look up into that big night sky, no doubt she will be the brightest shining star you ever did see. We love you sweet Danielle marie. Our little peanut. Thank you for choosing us to be your mommy and daddy. 

This seems like a lot to bare.....but how does she feel?

I haven't wrote in awhile. You don't know what a Miracle is until you need one.

Things have been up and they have been down. Things have been great and they have been scary. Our hearts are broken and they are full of love. They are happy and content and they are sad and scared. Last week was a terrible episode for Danielle. Our nurse called for help, I was on my way home with both kids, I didn't know what to do. Proceed home not knowing what I was walking in to with both kids, or hold off. I prayed to god to protect us. We walked in and she was ok. Then two days later bad again. In the middle of the night I awoke to that terrible sound, I quickly woke Brad and we went to work doing what we do. Then she was ok, Then a few hours later bad again. This lasted all day long. Our two nurses right now are angels, they provide us great comfort. They provide Danielle great care and comfort. But this aching in our heart is so heavy. Hospice is there telling us what we have sensed. The pattern is changing, things are changing. What does this look like? We won't know until its over, they are honest with us about that. So we hold on to her and love her and hug her and cherish every minute with her.

We did Halloween a little early. Costumes and pumpkins. We did the pumpkin patch and it made our hearts ache without her by our side. But she was so happy to put on her cat woman costume and she rocked it! It fit her perfect and she looked so pretty. Brad's brother and wife brought over their new baby and Danielle was able to 'babysit' and hold her and see her for the first time. She loved it! My heart swelled with pride and Brad's did too. It was so precious.

A couple weeks ago the Deacon came back over and did some praying with us. We chatted for awhile about life, and then about some random things too. We decided that night that Danielle would make her first communion. The feeling of Gods love and spirit in that room were like nothing I can truly convey to you. It was so amazing. It was heart felt. It was whole and pure. It felt like nothing in the entire world could break us in that moment. That is what we want to remember every single day.

But then our minds get the best of us.

The heaviness on our shoulders is so heavy. We are praying God to take it off our shoulders so we can just breathe thru these days. Brad got very sad during her cares last night, just wishing we could have her say Mommy or Daddy I am tired. Or Mommy and Daddy, this hurts me. Or Mommy and Daddy, I am ok. And I wish all of those things too.
This morning the heaviness was taking my breath away. Then I was wondering is this how she feels too? Is this a constant for her? I grabbed my phone and pulled up a devotional, instantly hearing Gods word and casting away the devil brought my breath back. It helped my shoulders to settle and relax. Casting away those demons is a real thing. God is so good. In moments where we feel weak. In moments where we feel alone. In moments of grief and sadness he is always with us. Why does it seem like we are so alone in those times when it feels like the world is against us? We are never alone. God has us. Most importantly God has Danielle.

The biggest comfort that Brad and I have in this, is when it is time, Gods time, for Danielle to sit on the lap of Jesus, she will also be in her Grammy's arms too. And I just cannot explain how much that means and the comfort that brings to us. If she cannot be here with us, there is no better person for her to live eternity with. Her loving Grammy.

The lonliest place to be.....

The loneliest place to be is in the middle of the scariest time of your life and feeling like you are living in secret. Well we pretty much are living in secret. All we have is each other. We have SO much more tho in the good days of our children living, physically loving up on them and being able to do so. Time is a thief I tell you because these are the days we want to keep forever, the days we want to remember forever. But let me mention for a moment the days that we want to forget. The days of feeling not included, the days of our family feeling left behind, the days of nobody 'checking-in' on us. And I'm being very brutally honest here because I need to get these feelings out because Brad and I have no other way to do so. So writing them down, maybe one day we will publish and they will help someone else.
We have felt for quite some time now, several years, that we haven't been included because of our family dynamics. And that hurts. Like it hurts so bad my tears right now feel like knives ripping down my cheeks. And I'll fully say my husband mentioned this to me forever ago and I kind of snubbed it off. I am not sure if its because I wasn't fully seeing it, or if its because I didn't want to believe it. But recently, the last couple of years, its apparent. And it truly doesn't matter because we don't want to 'push' our child aside to go do something that she cannot do. That's not fair. And its really not fair to ask someone to not go do that without us because it might hurt our feelings. That's not the answer either. What is the answer? I do not know. We have really tried to become hardened to these situations, to put up a wall so they don't bother us. But they bother us time and time again. We have tried to remember that not everyone who wants children of their own is even blessed with them, and how sad those people must feel. And those that want more than one child but it just can't happen, and how lonely maybe they feel. Or those who don't have any family at all, and not a circle of friends and how secluded those people may feel. We really try to put ourselves in those shoes of others to try and again push our feelings aside. Some days that is easy. Some days it is hard. Very hard. The birthday parties our girl doesn't get invited to. The play dates. The adventures of roller coasters and water slides. It actually hurts us the most for Danielle. Because she is FULLY cognizant of those things going on around her. She knows that those things exist, because in her younger years when she was more stable we did a few of those things with her. Now, we cannot. And it breaks me. Like truly it feels like someone took my heart and ripped it out and crushed it in to a zillion and ten pieces.

So how do we over come this? Well I am not sure but we try in the only way we know how. To just live our life and each day to its fullest and one day the times we have now, we will miss. And my heart will be crushed then, in a different way. So we do family theme nights. This is a way for all of us to be included. And with the baby going to bed pretty early, it allows us some extra time with the big kids. And these nights are becoming a family favorite. We are forced to stop other activities, focus on only one another and we find ourselves laughing during a movie, or during a board game of Sorry when all of us need to draw a 1 and that doesn't happen for an hour it feels like, or during outside time. In these moments everything seems a-ok. Our hearts seem a-ok.

Comparison is the thief of joy I tell you. It is rotten and it is horrible and gosh darn it, it shouldn't exist at all. And maybe some of the exclusion is our own fault. Maybe others assume we can't do things. Maybe because of social media, people 'assume' things in our life are fine. But this is a huge life lesson because you know what assumptions do.....they make an ass out of you and me. Just because you see something that appears to be so fine tuned and well, reach out and inquire. 'Hey friend! It seems you guys are doing so well. I'm happy for you! How is your family?' asking questions most often leads to some type of answer further more than what you 'see' or 'hear' from someone else. We are guilty of that too I know. I try to reach out to my close friends weekly. Even in the midst of the hardest time in my life I still don't want to use that as an excuse to shy away from everyone. Because I know the feeling of loneliness. And what do we have to feel lonely about when Brad and I have each other and our children? Well I don't know. I don't want to fear missing out on any moment at home that I never may get back. And I never want to fear missing out on any moment with friends or family that they may never do again. So what's the answer. We are swallowing our hurt and our pride and soaking up EVERY single memory with our babies. These days we know we will not get back, so I want to fully live up every single second of every single moment of the day. And I never want my children to ever say they feel like they missed out on anything either. So if my kids can one day say they lived a very full life, a very blessed memory filled life, then this hurt Brad and I feel seriously doesn't matter at all. Its just a feeling of a moment. We are doing ok pushing it aside, we are getting better at moving forward. And moving forward as a family of 5, together, is truly all that matters. We will make our own memories together, with others if we can at times, and I sure hope I look back on this moment and feel like I did everything in my power to make sure our children feel OH SO loved, and not the least bit less.

So dance and music parties while the boys are away swimming are just a few things we do. Mom is silly, the girls laugh and smile and in those moments life sure is good. Time stops and nothing outside matters. Nothing at all.

*please don't judge us for these feelings. Please don't take them personal. We are still learning too. Learning about each other and circumstances and family and friend dynamics. We don't want pitty at ALL. We just want to make people aware that these feelings are very real. So maybe it will help someone else at some point if something challenging comes up in their life too. Just help love us thru.

Sun's out....Smiles out!

And its as if the weekend wasn't terrible at all. I mean the breathing junkiness and such is still there and very noticeable but as far as personality there are smiles, a little bit of talking and our girl has slept well, not needed any meds to get comfy. She gave her Daddy some fits while eating because she was actually hungry. These moments are our Danielle, our girl that we have loved for 9 years. These moments make it easier to forget the scary ones.
This is our girl that we know. These are the voices of our daughter, the giggles when her sister squeals or her brother let's out a big ole' toot, yep his gas is so funny to her, LOL! She is 9 after all :-)

So today we enjoy the sunshine. Enjoy a moment at a time. Try and not sweat the small stuff, or the many hairy days we had before. It is so crazy that as fast as the scariness, touch and go moments come on.....4 days later it switches and she ok, for the moment. The rollercoaster affect is real.
We soak up all of these sunny moments we can get. Isn't she beautiful!
xoxo-

Holidays & rounding out 2016!

Hello there! Wow, Danielle came home and our December FLEW by! We were so excited to get home and get into a good routine again, not really knowing what that would look like I am SO excited to tell you that it went better than we could have even imagined!
         I truly mean it when I say this in every meaning possible, We.Have.Our.Girl.Back!!!!! It feels so good. Last year when we came home, you probably have heard me say before, we were honestly scared. The Danielle we had was SO different then the Danielle we always knew and it just really felt unsettled. We of course did every single thing in our power the entire year to try and figure her out, try and figure out what was going on and we never had any answers. Everyone would tell us, 'oh, she's older now and understands more and just isn't as tolerable of recovery with what she just went thru.' Or, 'her body just needs time'. Or, 'she is really fine, everything checks out, you have no reason to be concerned, just relax and don't worry as much.' Well for us to not worry is kind of like saying, here's a sucker to a kid and not have them want it. Truly worry happens 100 times over in our minds daily, if not more.
So we would go back to the drawing board, what was Brad and I, and talk over and over again about what could be going on. It was very exhausting. It was very frustrating. It took every single ounce of him being strong for me and me being strong for him, for us to keep it together, honestly. But it didn't break us. We didn't break. I'll be honest, we shed tears. We got angry. We got on our knees and cried out to God to help us, please help our girl. I truly think it was a test. It was a test of us and would we get thru..... It was a test to keep and put in our life the people that needed to be here. We had so many changes in 2015 in regards to our daughters care. Some we loved, ended up moving on. Some new ones that are now amazing blessings to us have come into our life. And some of our biggest cheerleaders, prayer warriors and believers are still here. And now, worry will forever be in the back of our minds but we are telling our self to STOP....looking for something to be wrong. Enjoy the moment. This is as big of a lesson to Brad and I that I can explain. It has everything to do with our personal character, our parenting style, us as humans, as servants of the lord and as I as Amber and him as Brad, a husband and a wife. We are praying and thanking God for protecting our girl just as we always knew that he would. We never lost faith in him. And now we are so thankful to be in a really really good place.

Fast forward to November, 2 days before Thanksgiving and our girl coming HOME!.......we are settled, we are loving every single minute of our girl. We arrived home just two days before Thanksgiving. Danielle was SO excited from the minute we put her in her stroller to come home. She talked nearly the entire way home. When we got home she looked around, you could tell she knew it was home but it took a day or two for us to feel like she was really acclimated. After all, 40 days in the hospital is a really long time.
She started by being sensitive to noises. We need to remind everyone she is just now 5 weeks post op from her most recent, of 2, significant brain surgeries, plus one more brain surgery she had in October and another tummy surgery also, so quiet is her favorite. However, Danielle has REALLY started using her voice. A couple weeks ago I noticed for the first time consistently she would verbalize on command for me. I would ask her a question and she would say, 'yeaaaa'. It was the most precious moment of my entire life. A child that has been non-verbal virtually all of her life, now responding on command. Ah, my friends, God is so SO good. Now she is a chatter box all of the time. She is eating TONS! There are SO many things about her that are amazing and new and I could go on and on and on about, she is absolutely an amazing little girl. She is definitely an angel of God and we could not be happier with where she is right now not only from a health standpoint, but socially also. She is holding her head up more, she is constantly pushing up with her arms and kicking her legs and moving all over the place, rolling everywhere. It is just so so soooooooo good!

When you see your child endure so much pain, it is really hard to maintain those thoughts that maybe it is for a reason. You look for the silver lining in rough days and try to remind yourself that God really knows what he is doing. We always need to trust in Gods plan, and remember it is his plan, not our plan. We firmly believe that every single one of those 40 days in that hospital was needed for them to truly figure out Danielle. As hard as it was. As much as it sucked. As long as the time drug on with no answers. As much as we cried and pleaded for them to just let us take her home. As many times as we fought them to keep looking for something, to keep checking, and as many times we told them we weren't leaving until they fixed her, we NOW know, it was so necessary. It makes me sad that the beginning of 2015 was so heartbreaking and so much seemed uncertain. We have learned that as painful for us as parents, and mostly for Danielle, as many of those days, and uncertain events were, they made our girl stronger today.

Thank you for continued prayers, thoughts, and any positive energy that you can and do, send our way. 2015 brought some absolutely amazing people into our life and we are forever thankful for all of you. We wish you and yours many blessings of happiness and good health in 2016! We are so excited for all of the wonderful things 2016 has in store for our girl. Many pictures and video's coming soon! We can't wait for you to see her!!!
Much love,
The Holub family

40 Days and......HOME!

Who would have ever thunk.....have you ever been in a tragic situation in your life where you've stepped back and thought....how did I get here? That is a question Brad and I have asked too often in our life. And then as quick as it comes on, we go thru it, and the wave is over. We have reached the surface, we can breathe again, we can feel whole and human again. Its a very strange feeling. A feeling that I would NEVER wish upon anyone. But if you've ever gone thru something horrific, you may have felt what I have just described.

After 40 days and nights at the University, our girl is finally home. It is very perplexing that she came home on the 40th day because a few weeks prior I had thought about the significance of 40 days and 40 nights in reference to the bible. If you are a spiritual person you may recall what I am speaking of. But during this time of so much going on with our girl, we felt tested beyond belief. So many days I thought, why, how, what is the reason? I prayed and begged for prayers more than I ever have in my life. This experience changed us. And I say experience because I truly felt that is what it was. I prayed so many time, God just please don't have her feel pain. I wanted to feel her pain, we didn't want her to feel pain. I just felt like there were SO many lessons in this 40 days.
The number 40 shows up often in the Bible. Because 40 appears so often in contexts dealing with judgment or testing, many scholars understand it to be the number of “probation” or “trial.” This doesn’t mean that 40 is entirely symbolic; it still has a literal meaning in Scripture. “Forty days” means “forty days,” but it does seem that God has chosen this number to help emphasize times of trouble and hardship.
The year 2015 started with us truly know something was wrong with Danielle. We did. We knew from the minute she got out of her last surgery in December 2014 that something was wrong. We had a different neurosurgeon. We felt unsettled. She was different kid. Everything was different about her. Her demeanor. Her breathing. Her body tone. Her personality. And if you know Danielle she doesn't cry. She cried more in the last 10 months than she has cried in her entire life, and I am so serious. We visited our local doc, we visited Neurosurgery, we visited the ER, we saw a pulmologist, we saw Oto, we saw every single doctor, we begged for answers, we prayed, we cried, we got frustrated and yelled out, we begged for our girl to get better. She didn't. It cost us relationships. We had issues with therapists, we had issues with nurses, we went round and round and round telling all of these people that SOMETHING IS WRONG. But NOBODY could tell us that something was, because to them every part of her appeared normal. We knew she wasn't.

So this brings us to October of this year. We honestly prayed that if she had to go thru anything, to please not have her come home until she was fixed. Until we could have our girl back. Until it was ALL figured out why she had been so uncomfortable for so long. So that is what happened. In a weird odd way, God answered our prayers. And for 40 days we were tested beyond belief. We advocated and spoke up and told our thoughts and pushed and pushed until we had answers. After her brain surgery to put her shunt back in, when her crib and room in the PICU were packed up, report had been called down to the 3rd floor and we were ready to leave there, I begged the PICU to keep her. I knew in my whole heart when I just happened to leave work and go up that day that SOMETHING WAS STILL WRONG. And we were NOT settling again. We had to advocate for her and make them find the root of what was going on with her, STILL. Finally they did. Finally they said she needed her shunt revised again because it was not draining correctly. Yet when they went in they said they didn't really see anything that was wrong. But they replaced it again just in case. And guess what, that was it, that was the final step that was needed, it brought our girl back. IT BROUGHT HER BACK! After over a year, whatever Dr. Wilson did that day, brought our girl back. I get SO emotional thinking about it!
We had to stay a few extra days to get her feeding again and to  make sure she was ok to come home. It was so frustrating to us because we were OVER it. We knew she was fine. We knew our girl was back and we wanted to be home. Tuesday afternoon last week, our girl came home. I cannot even begin to tell you how amazing it feels. Those 40 days tested us, but you know what....they were needed. We know in our heart it was needed to figure out everything that was going on with her but it brought our girl back. And we are SOOOOOO thankful. God is so good my friends. Why in the world would I ever question him? Why in the world would I ever doubt my faith in him? Because when life gets tough its easy to want to give up. Its easy to be negative. But my friends we were tested, God wanted to see how strong we COULD be for our girl. And if you could see her now, oh my goodness, you would know in an INSTANT how different she is. We pick her up she instantly lays her head down on our shoulders. Her body is SO relaxed all of the time. She had not cried ONE time since we got home last week. She is eating TONS. She is SLEEPING! Oh my gosh, she hasn't slept in a year and she is sleeping! Our hearts are so over joyed. We are beyond happy for her. We are beyond thankful.
I will update some pictures and videos very soon so you can see our beautiful girl. But I wanted to update quick that she is home. To everyone that supported us during this time, thank you from the bottom of my heart. The gift baskets and meals and gift cards and the prayers, the positive thoughts, every single thing and thought and prayer we are SOOOO grateful for.  You my friends helped us get thru this unimaginable time. The hard thing is that we know people have it worse. We know that some are tested even more than we were. And for all of that friends, I ask that you continue to pray for those going thru the hardest of times and for those that will not be home with their family's this holiday season. Until next time, take care and my gratitude for you is more than I can explain. Thank you for loving our sweet sweet girl.~

Emergency Surgery....again, today

As I wrote over the weekend things were complicated. They tried and tried to get her pain under control, and see what if anything was going on. We were literally loaded up to move down to the Peds floor when I said, hold up. You HAVE GOT to figure this out. Thankfully they listened. And they checked everything. Tummy, heart, labs, everything and when it all came back ok then Neurosurgery decided to check her head, in a different way.

Yesterday they decided to do a frontal test on her which is where they inject dye into her shunt and watch it, live via scans, flow down the tubing to make sure its functioning properly. So they did that and right away the radiologist said something was wrong. It was very very slow to move any fluid. Neurosurgery then started looking at MRI scans from right after her surgery last week, until now. There was a big difference in cranial pressure. This meant she needed to get to the O.R immediately. So last night she was set to go within 8 hours. They didn't know what they were facing, but needed to check it out and gave us 4 possible scenarios.

Just before midnight the doctor came in and suggested we delay the surgery until early morning. With the catheter going into heart, if there were complications at that site, he didn't feel.comfortable with the amount of staff here over night to jump in and help him. So we snuggled all night long.

So this morning her Neurosurgeon came in and explained everything in detail. He wanted it figured out too, as much as us. They took her into surgery and right at 3 hours later she was done. He wasn't sure totally what he found, if anything. He said they disconnected the part in her head from the part in her heart and flushed it, in case there was a clot. Nothing. Then he flushed the upper part, nothing. But just because it had been draining very slow, at the most open setting there is, he replaced the part in her brain anyway.

This is a LOT for our sweet girl. We are beyond over it. We are beyond ready to be home. We are really ready for her to be her happy self again. We've seen a few smiles the past few days but just from us acting silly. So I really need to see her personality come thru again, and shine bright as we know it can.

We would appreciate prayers, so many prayers would be so nice. We know the power of prayer is so strong, and our girl needs that. I will update as I know more.

Post Op Update....

Danielle went to the OR on Friday to have her shunt internalized. The surgery was scheduled to take approx. 4 hours. I had spent the night with her on Thursday and I bribed the nurse, aka. talked her into letting me hold her. The plan was to hold her and snuggle all night long. We hadn't gotten to hold her since she had her first surgery, so snuggling is something that Danielle thrives on so much, and so do we, it was long over due! This mama was SOOO excited!
It is quite a process, clamping her ventric just to move her. Then moving all of her IV cords and then getting her in place, re leveling her ventric and then making sure that her head stays in line. I held her for about 3 hours and she just melted in. It was so good for both of us. She went right to sleep, snoring away and all of the loud noises around that usually startle her didn't even make her flinch. She was out. It was so wonderful and in that moment, all seemed right with the world.

Just before midnight she got really upset and we put her back in her bed. She ended up being up all.night.long. I couldn't believe it! We tried our best to not talk about surgery around and in front of her, so I am not sure that she was anxious, but could have been possibly. She is a smart cookie and misses nothing, so she fully knew what was approaching. From then on, it was a rough night.
Friday morning right at 7am they came to take her to the OR. She was more excited to go for a ride in her crib I think that worrying what was going on around her. I just cannot imagine being in that position, as a little girl, going to a big scary place, again, for another surgery, something that she has had too much of. She is such a hero in my eyes, such a light and inspiration to me. And from a parents standpoint it is just gut wrenching, heart breaking and so so hard to see your child go thru something over and over and over again, that is out of your control.

Finally about 1145 the unit clerk came in and told me that there was about 30 minutes remaining of her surgery. Up until that point I had no updates at all. I figured while she was in surgery I would go down, grab some coffee, maybe breakfast and kill time and come back up to her room and wait. I didn't leave her room, I didn't even get out of the recliner. My tummy was in knots I was so nervous. I tried to sleep on and off because exhaustion was taking over, but my mind was restless think of and praying for our girl. Daddy was also anxiously awaiting updates and unfortunately we didn't get any.

Dr. Wilson came in and gave me an update after surgery, before she was back. He said that all went well. They put the shunt in on the right side and the Pediatric Surgeon ran the tubing THRU her Juglar vein along her neck and into her heart. I did not know ahead of time which peds surgeon would be assisting him in the OR. I was more than pleased to find out it was Dr. Pitcher. We know Dr. Pitcher well, he is the amazing doctor who did 3 hernia surgery's on Dylan. He is a world renown doctor and just a wonderful person. That instantly gave me some comfort. Dr. Wilson did warn me of a few things. That the tubing although in her vein, can move. She will need to have xrays and tests done 1-2 times per year to make sure that the tubing is in the correct place in her heart. Also her movements can move the tubing. This scares me to death. So something to watch for and make sure we don't put pressure on her neck or chest, also the only way we could know if there was a shunt malfunction, is a blood clot. EEEK. A blood clot, in her heart. ugh. this stresses me OUT!

So over the weekend the plan was to just watch her, make her comfortable and let her rest in the PICU. Well she came back from the OR looking really comfortable, but right away I warned the resident doctor, you have got to start extra pain meds because her looking comfortable could change in an instant. Well they didn't listen and guess what, her pain went from 0-10 like NOW. I was so frustrated. The next 24 hours were spent trying to manage her pain. She doesn't really respond to morphine and they wanted her to have that in larger doses, and as I told them would happen, she didn't respond to it. As a parent constantly being on them, its just so hard. My only frustration all along is repeating over and over and over again what works and doesn't to so many different people. They finally put her on Dilaudid, which is a lot stronger and it worked. They wanted to avoid the stronger med, but just couldn't. They also did a MRI and shunt series, which are x-rays to make sure that her shunt was in a good position after surgery. Well the results came back and the doctor came in and told us, the tubing in her heart had already moved. Remember how I said it could move around, just in the few movements she had made a few hours after surgery, it had pushed down further into her heart. This makes me so nervous. There is nothing that needs to be done about it now, but she needs to be closely monitored.
Saturday morning we first noticed that her incision was leaking. This ended up being an issue all weekend long. It was the incision where her previous ventric was and it would go from not leaking at all to leaking a ton, really quick. Sunday morning they decided to do another MRI to get this figured out. because in the midst of her leaking fluid she also started throwing up a lot. They did the MRI and all during the day it kept leaking on and off. So the glue they put on wasn't working. I held her yesterday for about 5 hours and all of a sudden I would feel something wet, her CSF had leaked all over my shirt, its pretty crazy to think about when you realize that its just not fluid, its spinal fluid!! They decided to put in another stitch last night and so far that seems to be working. It is a little unnerving to think that an area of her incision could have been open enough for a new infection to get in. I don't want to think that way but it does make me nervous. They had stopped her antibiotics on Saturday. I am waiting to hear if they will re-start or what they will do. At this point she is still in Intensive Care.

So things have been just ok, I would say. Not as smoothly as we would have hoped. We still really appreciate prayers and positive energy being sent our girls way. I do not know what today or this week will entail at this time. I pray that our girl will heal, be comfortable and be able to come home with us very very soon. Thank you for the prayers and thank you for checking in.

Update! Approaching week 6...

I can hardly believe its been a week since my last update. Not a ton has changed in the world of Danielle so that is probably the best news. They feel like they did get her 'suspected' infection under control. The sensitivities came back the other day and so they did some switching around of her meds. They took her off of the Venco, that drug is just really really harsh and they constantly have to do blood levels before they give each dose, and so her being able to come off of it was good with us.

They added in an additional antibiotic called Nafcillin and then the Rifampin. There seemed to be some confusion on Saturday tho about the Rifampin. The PICU docs took her off of it, well then Monday mama had an intuition and rushed up to the hospital, its a good thing because when I got there the CDC docs were in there and talking about her meds and what she was on. They wanted her to continue to be on the Rifampin, well I explained the PICU team took her off, he wasn't super happy about it and they got her started right back on it. That leads me to the other part of Monday.....

Dylan is such an amazing big brother and often leads the way to sissy. He knows the routine and right where to go. Things that kids should never even know how to do, but he does and has had to learn, and he never complains. 

I was struggling Monday morning. I just had this terrible feeling in my tummy and was feeling even more horribly guilty not being with my girl. We had been the night before and Brad even there that morning and she was fine but something just wasn't sitting well. So I took off and headed up there. I arrived to have the CDC docs in the room, thankfully I was there to tell them about her med being discontinued because HE wanted her on it! Ugh. Second thing was that her feeding tube was just about popping out and that could have been so bad because she had a feeding going and then also she threw up. It was just one of those moments where I wanted to stop time, pick up my baby, block out the outside world and not let anything else in and just run away with her. I know I quickly told myself that couldn't happen and that wasn't reality, but it was a frustrating moment and mama bear came out. I also sat there and waited 45 minutes before I even saw a nurse to come help! This is Intensive Care and it gets very busy because that is where the kiddos are that NEED that care, but I couldn't even bare to think if I hadn't gone up there what would have been going on. Mommy guilt.

We still haven't been able to hold our girl, but when they change the bedding out we get to hold her standing for a few minutes at her bedside, I soak up all the lovin' I can in those few minutes.

So we got her all situated, Daddy was up for the afternoon and evening and all was well. We are approaching week 6 this coming week. Seriously. I can hardly believe it. There is no doubt in my mind that Danielle needed this long to be there and to get well. She was really really really sick for a very long time, and it just goes to show, because it took a week of being there to even begin to figure out what was going on. But as a parent our guts knew a LONG time ago that something was wrong. When we left that hospital last December we knew something was wrong. So a rocky 10 months it took for something else to show so they could investigate further. And here we are.

Here is a recent picture of her tummy incision. We are so happy with how well it looks and how nice it is healing. We were pretty nervous about it before but it looks really good and doesn't seem to bother her at all. She is back sleeping on her tummy most nights which is nice.

She really has been in good spirits most of the time. She is no doubt stir crazy and ready to bust out of there but we keep rotating toys and child life brings in some amazing fun things for her, and us too. We are so grateful for those amazing volunteers!

 



They are looking at doing surgery either tomorrow or Friday to replace the shunt. This is where I beg for your prayers. This is where I get down on my knees and call and cry out to God to PLEASE protect our baby girl. We are sick about it and so nervous. This will be different, but I know that with your prayers and our prayers and the best docs in the world, that she will be ok. Here is the purposed plan, but as we all know, it could change, but as of yet it hasn't. Ok here goes:
They will place a Ventricular Atrial Shunt in Danielle's brain and run the tubing......to her heart. Yes, to her heart. This is where I almost throw up because it makes me so nervous to say that and to even think about this. Friends you thought our girl was fragile before, well I want to put her in a glass case now and protect her even more forever. and ever. and ever and ever. That's not reality either but this just makes us incredibly nervous, because its new.

So the shunt will be in the ventricle of her brain set to drain the fluid at whatever type of setting they put it to, to drain constant fluid. It will again be controlled by a magnet so they can change it to drain more or less fluid at any time. Next they will run the tubing down thru a vein in her neck and into the first chamber of her heart. :-( This is a fairly normal practice for them they say, but not something they do a ton of as priority, because the preferred position for the shunt tubing would be in her belly. But they cannot put it back into her belly because she's had 2 infections stem from there causing issues. I asked tons of questions, stated my concerns and they ensured me that the risk actually is still just as if it went into her tummy, only slightly higher. Easy for them to say right! The Neurosurgeons will work along side the Pediatric Surgery team who will be outlining the vein and placement of the tubing into her heart.

Here is what it looked like before going into her tummy, and here is what the new shunt placement will look like going into her heart.



So I am calling out to my prayer warriors. I am asking God to PLEASE protect our baby girl over the next few days and beyond. Her little body is so fragile. She has endured so much pain and suffering. It is time to get this behind us and let this little beautiful 7 year old girl be a kid and grow and learn and play all the rest of the days of her life! No more surgeries please! We want our baby girl home.
Thank you so much for your love and support over the past 6 weeks and beyond. If you've got them in your heart for awhile longer and would be so kind to send them our way, we would love it so much. We will continue to keep you posted on surgery as we know more. Today Daddy is spending the entire day with his girl and tonight, head shaving party! Yep you've heard it right! Over the past 3 years with all of her surgeries they have only shaved parts of her head that they needed to, we would then let it grow and it would be pieced together at several different lengths. Well Brad and I have been talking and we are ready for our girl to have a fresh, clean start. This girl has rocked the pixie before and now we are going to shave her head so it is all one length and let it grow as one. As we are praying this surgery will do for her, it will be the end resolve for the past 3 years of issues and the old will be behind us and shaved away, only to grow and flourish from now and beyond.

Our Beautiful girl a few years ago when the front of her head was shaved. How beautiful is she and how beautiful are those eyes!

Make today count friends. Hug your babies and show your gratitude today to ALL Veterans.

Thanks for checking in.