Never a Dull Moment

What can I say about little Eden?!?

Her run with good feeding has come to an end.  They tried to up her feeds again on Monday since she was doing so good and she just could not handle it.  They now think that is why she had a fever, because she routinely gets a fever, swells up and has loose stools if she can not tolerate her food.  Before this happened, she was at 24 calorie strength at 24 cc's and hour of breast milk(her best ever of anything.)  They tried putting her rate up to 26 cc's/hour and she bonked.  She is now on plain, unenhanced breast milk at a rate of 20 cc's per hour.  Breast milk contains 20 calories per serving on average if  you've ever wondered.  Amazing what I've learned through all of this.  At least they didn't have to stop her feeds altogether and she is still liking my milk.  That just makes me happy!  As for the fever, nothing since early Tuesday morning and her loose stools are fine now as well.  Her puffiness however wasn't going down so she is on a continuous IV diuretic drip again.  They would like to dry her out as much as possible before next week.  Speaking of next week, the word on the street as of last night is Tuesday morning at 8 am.  We are not going to tell her though as who knows what she will do this time to get out of it.  Not that I am excited by any means for surgery, but I really feel like it's time to start a new chapter and it's time to get this done so Eden has an opportunity to get better.  She merits no less.  She also deserves the chance to be held, loved, kissed and cuddled like a newborn should be and this is the only way we can achieve that.  I have never been a mommy that holds her babies all day without wanting to put them down, but I just might hold Eden forever when I am able.

My wonderful mother has been down with Eden the last two days and it has been so nice spending time with Ainsley and Emerson.  We went to a movie this morning and then to do our Father's Day shopping.  Of course, daddy will get the old reliable gift of new ties (they picked them out all by themselves so I hope he wears them!)  Since we do not have a pool, we also spent yesterday afternoon running through the hose and sprinklers in the backyard.  It's amazing how a little water can make two girls and a mommy so happy.  It almost feels like life is normal when I have days like these and I think they help to keep me sane.

Wednesday - Just Kidding

Well, Eden decided this morning that Wednesday just didn't fit into her social calendar for surgery.  She did the only thing she could think of to get out of it, she spiked a fever!  She is now officially my little "Stinker Pot." What a roller coaster this is for us as we get anxious and mentally prepared (as well as you can be) and then have it pushed back again.  Dr. Pearl is looking now at Monday or Tuesday of next week, but we have all decided not to tell Eden so she doesn't weasel her way out again.  I make light of the situation a little, but you have to admit this is crazy.  It is like filing an extension for your taxes, it doesn't make you exempt it just delays the inevitable.  On a more serious note, they have sent away every culture imaginable for her and nothing so far.  She also does not have a fever any longer, but they just can't chance it.  Dr. Pearl went into great detail about the surgery and every possible risk and outcome.  I will post it in detail later.  Know that we appreciate so much all of your love, concern and support.  I just remind myself daily that it's the long term outcome that we are most concerned with and we all just want to see Eden healthy and happy as soon as possible.  We love and thank you all for everything.  I think it is safe to say that Eden has taught many people a great deal and for that, she is my hero!

Day of Reckoning

Dr. Pearl wants to do Eden's surgery this Wednesday so we are less than 2 days away.

I was not expecting his to say this week at all as he is just returning from his knee surgery and we thought at the end of last week that it would be next week.  In all honesty, we did not know when and since it's Dr. Pearl's call as he's the "miracle worker" (I am thinking very positive) he thinks it should be this week.  I have to say that I am now getting so nervous and anxious.  I know that this has to happen in order for her to have any chance to get better, but at the same time it was nice putting it off to avoid what is so scary.  Marcus and I will be meeting with Pearl tomorrow to go over all of the details and time frame.  They did tell me today that she will be the first case of the day (and probably the only) and will go into the OR at 8 am.  They expect her to be back in the PICU no sooner than 3 pm and it will probably be 4-4:30 pm before we get to see her as they like to get her settled and stabilized before parents come back.  They think that she will make it out of the OR, but she will probably be VERY sick for some time and will require lots of support to help her heart beat and keep her stable.  She will be on the heart-lung bypass machine for the entire procedure and they will most likely have to freeze the room down and stop her heart completely to do some of the repairs.  I will give more specifics tomorrow when I have them.

I am so sad because I do not think my in-laws will be here for surgery.  As we did not know when the date was for sure, they decided to drive back to Mississippi to see Marcus's brother and family this week.  I know that Marsha, my mother-in-law is devastated as she was an ER nurse for 25+ years and has been so good to be involved at all times.  My first thought today was to see if they could move it back until next week, but I know that they adjusted Pearl's surgery schedule to put Eden first and that tells me that they think it's high priority.  Yet again, I don't know exactly what to do.

I have such a testimony of the power of prayer and Eden needs them in the next few days more than ever.  We have experienced miracles in our journey with Eden and I only hope that there are more to come.  I really have to thank each and every one of you for your constant love, prayers and support.  We feel them and they sustain us daily.  If I could write each of you a personal thank you I would, but there are too many of you who have been so good to us that I just can't keep track.  What an example you all are of service and love.  I pray that the Lord will bless you for your service to us.

Hurry Up and Wait

Well, we are no longer a go for Monday.

Dr. Pearl, Eden's surgeon has been out the last 3 weeks because he had reconstructive knee surgery.  He is not sure how his knee is going to hold up during Eden' very long, extensive surgery so he wants to wait and see how he does with some of his easier cases first.  Since Eden is not in dire need for surgery right away, we can wait.  Although all of this anxiety and waiting is killing me, I do not want him to be preoccupied with his knee during her surgery.  We are looking at an easy 7-8 hour surgery so we need him at his best.  Her cardiologist told me today that they don't have a real plan right now. but they have a ton of thinking.  It could be the end of next week, or the following week as well.  She is tolerating my milk better than any other formula she has received thus far.  Boy does that make a mommy happy!  Her infection seems to be under control, we keep praying that with waiting for surgery she will not get another one.  She seems to enjoy her infections.  Other than that, life in our little PICU room is about the same.

As time goes one and we don't see the end in sight, it gets really hard for me some days.  I never thought all of this planning and coordinating of children and hospital shifts would be so stressful and draining.  I really prefer that someone be at the hospital every day to spend some time with Eden, but it's getting harder and harder to make it happen.  As the mom, I feel like if no one else can go on a particular day, I should be there and then Ainsley and Emerson cry and carry on because they don't want to go to someone's house, they just want to "stay home!"  Now with gas prices and my gas hog, it makes me sick to fill it up.  What is a mother to do.  I sometimes tell people who ask how we deal with it that we didn't choose this, but we do the best we can.  I think that if we knew how hard some of our trials and challenges were going to be, we would do everything possible to avoid them.  However, I have never felt so blessed and so strengthened by the Lord's spirit than I have at this time so in that sense I would not change this for anything.  It is so uplifting to read the wonderful words of faith and encouragement from so many of you who continue to pray for and support our family.  It amazes me how quickly I can lose sight of the Lord's great eternal plan and get caught up in my limited view of life, like a horse with blinders.  I know that our time on earth right now is very short in comparison to the eternities that await us.  I am so grateful for a loving, merciful Heavenly Father who allows me to feel peace and happiness amid all of the turmoil around me.

A Mother's Worries

I find myself worrying more and more as Eden's next surgery approaches.  We are reminded all too often just how risky it is going to be and that it is her "make it or break it" chance.  I really try not to think of anything but the positive, however with all of the medical talk it is hard not to think of the what ifs.  Eden has shown us all how very strong and determined she can be, I just hope this is not too much for her little body to undergo.  She has been doing better the last week and a half and part of us want to see if we can wait a while longer for surgery.  This could give her a chance to get bigger and stronger, but she could also take a turn for the worse with infections or lung problems that would make surgery an even bigger risk.  The bottom line is that Marcus and I only want to postpone the procedure because it makes us so scared.  It is our "day of reconing" so to speak and we want to put it off as soon as possible.  Eden has looked so peaceful the last few days.  I like to think that her little spirit is in a much nicer place with our Heavenly Father and family that love her dearly while her body is in pain and discomfort.  With all of the blessings that the Lord has given to Eden and our family, I can not imagine that He would allow her to suffer or hurt.  I know that He loves her too much!  A mommy has to believe this or a challenge like this is just too difficult to handle.  The word on the street is still Monday morning for surgery as long as her infection is completely gone.  Infectious Disease is keeping a close eye on her.  When I arrived at the hospital today, I was a little sad standing next to Eden's bed.  I was missing holding her, seeing her cute eyes (she sleeps almost all the time) and being close to her.  She is such a big part of me, but so distant at the same time.  Just then Chris, Eden's nurse for her first three days after her first surgery, came in and gave me a big hug.  She told me that she would be here on Monday and would have Eden again and then she just said "I'm sorry."  That meant so much to me.  I want to thank all of you who have followed Eden's journey and have left so many kind, encouraging thoughts with us.  We feel all of your support and prayers and are forever grateful for them.  It is overwhelming to me how we feel an immense love from our Heavenly Father and all of you.  Please remember Eden and her surgeons in your prayers leading up to Monday.  One of Eden's little heart friends, Bela is having a difficult time right now.  She was the one we mentioned a while ago as she and Eden share the same birthday and she also has a chromosome disorder.  She suffered a very big scare on Sunday evening and needs our prayers as well.  On another note, I took Emerson for her two-year check-up yesterday and she weighs a whopping 23 pounds!  I don't know why they think they can get Eden chunky since my others are far from.  Ainsley is 3.5 years old and is finally 30 pounds.  The funny thing is that they are really good eaters, I just don't know where they put it.  Thanks for everything, we love you all!

AMAZING K2 (keisa keisa)

I don't write often enough, I leave the prose up to my wife, but I thought I would let everyone out there learn 12 things about Keisa that they might not have known  before:

1. She served a mission in Guatemala
2. She graduated with two degrees: Exercise Science and Spanish
3. She won the state high school cheerleading competition.
4. She went to nationals in track during college (placed in top 10)
5. She's traveled Europe
6. She was a highly ranked triathlete (before kids)
7. She set the course record in cycling at a bike race
8. She has an amazing testimony of the Gospel of our Savior Jesus Christ
9. She waited 3 years for me to come around and finally ask her out on a date and marry her
10. She has done the death march twice (rim to rim to rim in Grand Canyon - 50 miles)
11. She is an amazing mother who is an amazing advocate for her children
12. and... she puts up with me.

So... as you can see she is smarter than me (I only have one degree), she's a better athlete, she's definitely nicer to look at and she instantly loves everyone she meets.  

I want everyone who reads this to know how much I love her and how thankful I am to everyone who has been so kind and helpful to my lovely Keisa.  Your faith, love and prayers have been a great strength to us and I am amazed at Keisa every day.  Thank you to all who have stepped up and rallied around us, especially family and our ward.  I will forever be grateful for how kind you have been to Kiesa.  Many times in our lives the Savior's love is felt by the selfless acts of others who carry it to us.  May Father's choicest blessings be upon everyone who has blessed our lives.  

Thank you, 

from the dad.

PS. Keisa, I love you.

Memory Lane

I was having a nostalgic moment today and remembered that I never posted any pictures from our trip to Disneyland last month. Enjoy!

Mommy and Ainsley riding Dumbo

Emerson and Addie (we took our sweet babysitter) on Dumbo

Ainsley and Emerson watching the parade

The girls with Jasmine

Watching a parade. The blanket was to shield us from the water they sprayed, but I had more fun tricking the girls to put it up. We love Addie and she was such a help for us that week.

A little update on Eden girl. She is still doing well with my milk in her feeds. Her incision is looking nice as well, which makes us all feel better since surgery is fast approaching. They have turned off her continuous diuretic drip to give her kidneys a rest as she is no longer negative, but she's even so we'll take it. Her puffiness is down quite a bit, but she still has a puffy face. They don't think it will come off completely until after her heart is repaired. She is getting over her infection so surgery is slated for the beginning of next week, Monday or Tuesday. They did a very thorough echocardiogram today where they inserted a probe down her esophagus to get a really good view. At this point, they want to have all the information and views possible. They are also looking at the ascending (beginning) part of her aorta to see where the actual problem lies. Depending on what they found today, they might do an MRI of her heart later in the week. I was cautioned again today about how risky this next procedure is and just how fragile her condition is. One of the nurses (not Eden's) actually had the nerve to say that some of the doctors are not very positive about the surgery's outcome. I sure hope our little Eden proves her wrong! We pray that she will have another fairly good week and be as strong as possible entering next week. At that point, it is up to the Lord to make known His plan for our Eden. I know that she is a fighter and I like to believe that she is going to amaze a lot of people.

Thank you for your continued support and prayers. We feel them, they strengthen us and we need them. Thank you!