Tired

It's nearly 10am, I'm sitting in my ever colder growing car in Provo Canyon. Ellcy is quietly snoring in her car seat and I'm waiting for her to wake up so we can go for our beautiful run up the canyon to Bridal Veil Falls. I could wake her but concidering the long sleepless night we had last night I'm pretty sure she's got to be as tired as I am. The hubs got up with her multiple times last night but it doesn't seem to matter.  I haven't had a full nights sleep in over 9months and it is taking it's tole on my old bones.

You may be thinking , as am I, "how can you complain about a little lost sleep when you have this beautiful miracle baby ?" I don't have a reasonable answer, mostly because my brain is pure mush. I feel ungrateful to find any thing to even entertain the thought of complaining about but here I am, so tired I can't think straight, so tired  I dread night time because it's only a tease. Truth be told I can make it through the days miraculously well so I continue to be watched over and blessed so i try really hard every day to remain grateful. Last night was simply extra long and fruitless.

I've talked with two people lately with relatives who have a child with hypo plastic left heart. The first are friends who didn't dare say anything to us until they realized how well Ellcy is doing. Their cousin's baby girl made it to the age of 7 and passed away during surgery #3. THAT is my worst nightmare, I haven't asked for a miracle, but I have asked that I atleast be with her should she need to leave this life sooner than we'd like. The second friend is in our ward and their cousin's (or niece?) baby is Ellcy's age but has been on life support for the last couple of weeks.  He is finally breathing on his own but they don't know about brain function yet.

You see now why I have such guilt struggling with something as minor as sleepless nights? I'm hoping my time about to be spent in nature will help me find some peace and grattitude, that and a good nap later this afternoon.

It truly is beautiful out here. I think I'm ready now to get her out and strap her in, she'll usually go back to sleep in the  stroller any ways and if not maybe our chances of a nap TOGETHER later will be more likely.

Growing up

I'm not quite sure if I should cry or rejoice. Tonight my Ellcy is wearing size 18 month Tinker Bell pjs. She looks absolutely smooshie in them....but 18 months,  really! ?  I mean she's only 8months old. Then again, her condition means she's supposed to be small and skinny and frail. In that case we will proudly announce her rolls and softness! We will celebrate her large jammie size and continue with the two bottles through EVERY night (yes this momma's feeling old and tired).  And speak of the devil....she's requesting bottle #1 early tonight.

Home

She beats the odds every time and yet every time I prepare for less than that...just in case. Only 5 days, actually not even five days if you concider her surgery wasn't complete until Thursday evening and she was discharged Tuesday morning, and we were on our way home. How is that possible I ask you?  I mean, really?! Oh my strong, sweet, amazing Ellcy. You will be the cutest "super baby" this Halloween but I don't think you'll be dressing up in a costume,  rather coming in your true form. 

July 16, 2013 we made our way to the PCH parking lot with Ellcy and oxygen in tow. It wasn't until the next morning that I realized the same day my baby girl was well enough to come home another family was saying their good byes as their sweet daughter left this life for her Heavenly home. Talia was a beautiful girl who was very well known for her optimistic attitude during her battle with cancer. That was a very humbling realization, one that I will not forget. The tables could have very easily been turned,  I know that. That possibility doesn't scare me as much as it makes me even more grateful for abundant blessings I've done nothing special to earn. Isn't that incredible? 

I've said it before and I'll say it again: I am truly spoiled.

My arms are happy

It's been rough, as can be expected.  However,  my arms are full of a sweet beautiful strong amazing baby girl which allows my heart to sing a happy song and do the dance of celebration (don't blame the rain on me) :) 

It's hard to believe less than 48 hours ago Ellcy was in surgery and just yesterday my hubby was afraid she wasn't coming home. Yet here I am on the recovery floor with my squishy sweetness who is nearly tube free.

Our bodies, these amazing gifts from God, are absolutely incredible.  And modern medicine?  Completely boggles my simple mind. How eternally and humbly grateful I am to so many that use their talents for good, to bless the lives of countless others. There must be a special place reserved for them in the next life. They were the hands that gave my baby a life when she couldn't do it on her own.

Hard

Surgery #2 is behind us and my body feels like I ran a marathon. ..every muscle is sore, and my heart physically hurts when I look at sweet Ellcy who can't seem to relax even in her sleep. I can't imagine her pain and confusion.  I just want to snuggle her in my arms and whisper in her ear to tell her I'm sorry, life isn't fair, and that she is my hero!

We met a 23 yr old girl today in the lobby of the hotel with hypo plastic left heart. What are the odds?  They didn't do the same procedures then but she has done good and still has her own heart. She even ran on her cross country team in high school. She came in last every time but she finished...that's worthy of a blue ribbon if you ask me, maybe even more worthy.

I love you...no, I adore you and treasure you dear Ellcy, I will do everything in my power to help you through this and pray for all the things I'm unable to do.  May you continue to have countless guardian angels with you every step of the way!

Never ending

Will this day never end? I put my baby in the arms of a stranger over 7 hrs ago.... 7 excruciating hours ago. But we have seen the exhausted surgeon Dr. Burch and are just waiting to get the green light to see my super baby girl again.

I hate tomorrow

Monday July 8, 2013 has come and gone. My baby girl sleeping peacefully next to me at our home. A poor family my heart aches for began their difficult journey when their baby with was born last week with hypo plastic left heart syndrome.  My husband concidered it a compliment that the surgeon could ask to put off Ellcy's procedure so he could operate on this new baby. What a blessing that our little sweetheart is doing so well that that was even an option. So.....why do I hate tomorrow?  Because it is THE day, the day we've known was coming yet could almost pretend it was only a nightmare. Tomorrow is surgery.

Ellcy's "other" mom, or 2nd mom, Devynn spent the afternoon with Ellcy and I at Primary Childrens while Ellcy got xrayed and EKGed and poked. All was well until the poking for a blood sample. She does NOT approve of the taking of her blood. But now she is tagged and disinfected and ready for surgery.....I wish I could say the same. I'm not tagged, I'm not disinfected and I'm certainly not ready. Oh sure, our bags are packed, I've lined up a babysitter for Spark (or Sparkle if it turns out the Beta is a girl) and Henry (or Custard or Guster, depending on who you ask), the kids have a ride so they can join us later after surgery is complete and stay in a hotel, the house is clean, the garden is being taken care of, the laundry is kindof sortof done....but prepared? I think not, I think never. However, atleast I know this go around that I'm not prepared and it will be harder than I can imagine but it's gonna happen and it's all going to be ok.

I know Ellcy Ava Burnham is being watched over and I know the angels will be with her in her operating room tomorrow just as she was promised in her blessing today. I have felt weak and at my breaking point for the last couple of days but today my pleadings to my Father were answered and I was able to find peace. So very many wonderful faithfilled people are praying in her behalf and on the behalf of my sweet family, for that I will be FOREVER humbly grateful.

So, though I hate you Mr. Tomorrow,  I will face you head on with many tears, a renewed supply of hope, and a heart bursting with love.....so there, take that!

Spoiled

I am spoiled rotten. My sweet sweet beautiful baby girl is doing AMAZING!  Better than I ever could have hoped for. She is chubby,  she is pink, she is happy, she is so smart and incredibly strong. Tomorrow we venture back to Primary Children's hospital for a cardiac MRI and look at scheduling a date for surgery 2.

I never finished this post and it is now june 21. The girls have been at girls camp all week and Trace has been on a missionary prep high adventure activity. I have always loved my children but going through this with Ellcy, my love has reached a different level. I am grateful for that, forever grateful, though it has proved to make this week extra long and lonely.

MRI went well and surgery is scheduled for Monday July 8. I'm scared to death. I can't be with out her she's been my entire life for the last six months. I remember too well waiting through the last surgery and seeing her after. Though I loved her then I treasure every ounce of her now. If it took strength before I'm in trouble this go round. But when strong is your only choice then strong you become, right? ! Somedays I wish I didn't know that to be true first hand.

Oh crap.....

She did it...or maybe I did it...all I know is Ellcy got really REALLY upset and as I was trying to console her I noticed the end of her feeding tube was no longer IN her nose!  It was,  however,  still under the tape stuck to her cheek. I wasn't too freaked out until she started spitting up and choking. Of course the hubby was out of town so I checked Devynn out of school so she could sit next to Ellcy in the car and makesure she kept breathing on the way to the hospital.
I'll admit it was fun to see her full beautiful face and not have her connected to anything or have to worry about tubes for a couple of hours.  However,  it was NOT worth the trauma of placing a new tube. Poor Ellcy,  it was so very sad, and riped at my heart while she squirmed and screamed and held her breath and gagged and....well,  you get the idea.
But all is well now. The new tube is in her right nostril this time and she is almos used to the change and remains as beautiful as ever.

Home

I really can't believe how smoothly things have gone for us....for Ellcy.  The joy comes with a hint of guilt as you meet so many parents where things are NOT going well,  parents who have been with their child in the hospital for months. We continue to pray for them,  that they will be given strength and endurance, that they will be able to find peace during the trial every parent fears.
Ellcy is currently asleep on a pillow on the bathroom floor,  her favorite nap spot. It's almost 1:00 in the afternoon and I'm still not dressed and my bed hasn't been made in days,  but I have all 5 of my children at home with me every evening and they are all happy for the right reasons, my husband loves me and we want for nothing...not much more I could ask for, not much else matters. I could wish for a whole working heart for my baby but I know that even that will bring us some form of joy.

disappointment

We were SO excited. The doctors thought we'd be able to bring our little Ellcy home on Thurs. Jan 10, 2013. It was going to be perfect, that was her original due date AND her 2 week birthday. What a miracle, to come home not 2 weeks after surgery but 2 weeks from birth!!!! So we filled her prescriptions, filled out all the paper work, got our training for the oxygen, pulse ox (sp?), feeding tube, giving meds, ect. I have to admit that everything had been going a little too perfectly, but I was happily soaking up all the blessings. The morning of the 10th came and ......guess what.....my sweetie lost weight which meant no going home. I was disappointed and it was extra hard to leave the hospital with out her (again). But I was hopeful for today thinking surely she'd weigh more (just 20grams) and come home.   The news this morning? She didn't lose any weight but she didn't gain any either. So now they are upping her calories and she has to gain weight for 2 consecutive days. Pray that Sunday comes with good news. Each day proves to be harder to leave her now that my arms have gotten use to holding her and I've fallen hopelessly in love with her perfect beautiful tiny features.

So here I go....packed for the weekend. I really really REALLY don't want to come home until Ellcy is my back seat passenger :)

Update

Tomorrow marks two weeks since my amazingly strong Ellcy made her appearance, and yesterday marks one week since her first open heart surgery. I can't believe how well she is doing (knock on wood). She is out of the CI CU (cardio intensive care unit) and up to the recovery floor. She no longer has a breathing tube. All the chest tubes and the RA lines in her heart have been removed which was a HUGE milestone...those RA lines were the reason we haven't been able to hold her. Yesterday was the first time I got to hold her since surgery and it felt WONDERFUL! Oh how I took the most simple things for granted with my other children. Mothers: hold your babies, nurse them, snuggle them, bathe them, change their diapers, get them dressed, wake up in the night to stop their tears and be grateful that you can :)

Today she will have her swallow study done to make sure she swallows good and the liquid goes where it is supposed to and not into her lungs. If that goes well than they will move her feeding tube out of her intestines and into her tummy AND it means we can start bottle feeding as well. I've never been so excited to feed someone a bottle.

Best case scenario we could bring her home this weekend! That would be less than 2 weeks post surgery...that is as fast as possible. I can't explain it but I almost feel guilty about all the blessings we've received. I've witnessed how it doesn't normally go so smoothly for most and I wonder why we are so spoiled. I guess Ellcy has a special mission and she is getting started early. I am so very very grateful for the countless prayers on her behalf. I know there are complete strangers praying for her along with family, dear friends, and neighbors. I now know what it feels like to have others bear your burdens with you and it is much preferable over bearing them alone.

So our goals for the week: get her off the little bit of oxygen she's on, remove the last IV, pass the swallow study and start eating ALOT. It's all about weight gain now...we need to fatten her up for surgery #2 in a couple of months.