EOP DREAM: June 2008

Monday, June 30, 2008

1 Corinthians 2:9

Dad here -

Lately I've been thinking a lot about time and our frame of reference for it. I think some times we, at least I do, tend to have a very narrow view and understanding of time and forget it is quite relative. We forget that what is happening right now in our lives is but for a small moment in time in this life and especially in the eternal perspective. There is a saying, "just as birth is not the beginning, death is not the end" and I know this to be true, but it's hard not to get caught up in your own tornado and think this is all there ever will be. Anyway, I was thinking a lot about my shortsightedness this morning and all of a sudden I was reminded of a beautiful scripture from 1 Corinthians 2:9 "... Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him." It was amazing as I read this how the Spirit comforted me and helped me to remember that all this around me is but for a small moment in time compared to the grand scheme of things.

I really believe the Lord knows us each individually, that He knows our needs, is our Advocate with the Father and is there to comfort us in our time of need. He wants to help us and if we can just see past the challenges of the day we will see the beauty that is in store. Just as the rainbow appears after the rain storm, so it can be in our own personal lives as we endure to the end and work through our challenges. It's hard to see it right now, but when I stop and think about the blessings in my life I am reminded that the Lord does love us and will bless us as we endure to the end.

I just wanted to thank all of you who have been so thoughtful to our family and especially my sweet Keisa with your little gifts, cards and kind words: it has truly helped us to endure this challenge. May our Father's choicest blessings be upon you and your family for the kindness you have shown us; for it has been a great source of comfort to us in our time of need.

Friday, June 27, 2008

Creeping Along

We are definitely not out of the woods, but Eden is creeping along.

They did not do her muscle flap procedure until yesterday afternoon around 4 pm and all went well. Her plastic surgeon is a very professional doctor and al business. She told us after that she was very pleased with the closure and thinks it should heal up nicer than last time. I sure hope for Eden's sake that it goes a little smoother. Her nurse for the last few days, Cindy, called me unexpectedly right before shift change last night just to tell me that she thought Eden was doing well. She said that she has counted more than 4 doctors over the last few days say that Eden is "one tough little girl." I am so proud of her and if you could have seen me then grinning from ear to ear. We all like to hear positive statements about our children and at was super for me. Of course I know that Eden is tough, special, beautiful, strong, feisty, fabulous and miraculous (I could go on forever!), but it's nice to know that her doctors think so as well. Although she has a long road ahead of her, I think everyone is cautiously optimistic and pleasantly surprised. She is still on quite a bit of medication to regulate her heart function, blood pressure, breathing and urine output, but as long as we can continue to ween ever so slowly, that is a plus.

Today was perfectly wonderful for me. I arrived to see Eden looking pinker than I have ever seen her. I could not stop commenting on how good her color looks. She also had her eyes open for more than an hour while I was there so we spent the entire time just talking and looking at each other. If you didn't know, it has been way too long since Eden could open her eyes. She was so puffy and retaining so much fluid before surgery that she could not open her eyes even if she wanted. Mind you, she still has a good amount of fluid to get rid of, but at least she can open her eyes and look around when she's awake. They took her two chest tubes out and also her catheter so its up to her to pee pee on her own. It was also so lovely to see her all dolled up. Cindy is so fabulous at not only taking care of her, but pampering her a little as well. She had a very cute little yellow barrette holding the front of her hair back and a darling blue and yellow bow adorning her pony tail. That's right Eden has enough hair to have both a pony tail and barrette and at only 4 months! That is one thing none of my child have lacked, hair. All in all, my step was a little lighter as I left the hospital this afternoon and I will sleep happy tonight.

Thank you for your constant love, prayers, kindness, support and faith. We will never be able to thank you sufficiently.

Wednesday, June 25, 2008

Never Forgotten

Before I update about Eden, I have to share an experience.

All I can say is that yesterday was a very difficult day for me, not just with Eden but other things. I was trying to draw water from a well that was completely dry. I just felt physically, emotionally and spiritually exhausted. Our health insurance has a $1.5 million dollar per person lifetime payout. For you and me, that is more than we will ever use. However, Eden is fast approaching her limit and at that point, what do I do? I have not received much help from the social workers at the hospital so I have been researching our options myself. Since Eden has Down syndrome, she qualifies for Arizona Long Term Care Services (ALTCS), which will cover all of her medical expenses for life. The catch is that they do not cover acute care situations, which is exactly Eden's case. ALTCS will take effect the day she is discharged, but what do we do from the time our insurance runs out and she comes home? If my calculations are correct, she will reach her lifetime payout by the middle of July. People keep telling me to apply for AHCCCS, health insurance for the low-income. The catch again is that to qualify, your income has to be below the poverty level. We are blessed that Marcus makes a good income, but who on earth can afford $350,000.00 per month in medical bills? Our only hope is that they will factor down our income with our medical bills so Eden can qualify. Needless to say, I was overwhelmed and by evening I had a horrible headache. The doorbell rang just before I put the girls to bed and when I answered it, it was a friend from church who handed me a card and said "just thinking of you." I immediately opened the card to find beautiful uplifting words along with some cash. The card said that with gas prices and going to the hospital so often, they thought it might help. WOW!!!! That was one of the most powerful examples of the Lord's love for us that I have ever seen. I was so touched that it brought me to tears and I instantly said a little prayer to thank my Heavenly Father for loving me and letting me know that He has not left us alone. I am also so grateful that this sweet family listened to and acted on a feeling/prompting to serve us.

We are one week post-op and Eden has done well. She is still off of the epinephrine and holding her blood pressures okay, except for when they mess with her. She is very feisty and does not like being bothered AT ALL! She voices her protests by letting her stats become unstable for a moment or two and then she settles down and all is well again. I think it's her way of throwing tantrums, which I guess she is entitled to at this point. She is also off of the pace maker and her heart is pacing itself nicely. Dr. Pearl took her to the OR this morning to close her sternum so she is recovering right now. It can be stressful for them when the pressure of having it closed hits. Like I said before, it's like putting on a tight pair of jeans for the first time, uncomfortable but you eventually get used to it. Eden's sternum is closed, but now her skin is still open because she needs the plastic surgeon to insert more muscle flaps. As you might recall, she had to have pectoral muscle flaps placed over her sternum after her sternal infection. The infection caused part of the sternum and rib bones to be very weak and almost non-existent so her plastic surgeon is going to place muscle flaps over her entire sternum to hold the bone in place. The bone will eventually grow back, it will just take time. I don't kid myself anymore, I know that Eden is not going to have a nice, smooth scar, it is going to be rather uneven and gnarly. I really don't mind though because it is all part of her journey and what makes her so special to me. I will update all about how the plastic surgery goes tomorrow. Our big hope and prayer right now, among other things, is that once she is closed she can avoid any and all infections and just work on getting better. She deserves a smooth go around this time.

Monday, June 23, 2008

Did You Say Viagra?!?

You read that right, little Eden is on Viagra.

Eden has Pulmonary Hypertension, which basically means that her blood vessels leading to the lungs are constricted, thus causing pressure to build up in the lungs. This could be due to her heart not working properly when she was born and also her non-heart related lung problems. This also makes them more difficult to ventilate. Although reducing pulmonary hypertension is not it's claim to fame, Viagra does just that and they are weening Eden off of her Nitric Oxide onto Viagra. It is given orally and she can come home on this. If you are interested, here is a wonderful article explaining it in more detail:

http://www.sciencedaily.com/releases/2004/04/040413001103.htm

Eden continues to do relatively well considering how sick she still is. She has only had one little episode where she "misbehaved." They are trying to ween her off of her epinephrine medicine which is helping to keep her blood pressure steady. They thought they had her weened completely yesterday, but she thought different. She was not able to hold her pressures steady on her own and they started to drop. They put her back on a small does of the epi and she responded well. She is once again off of it today, but this time she seems to be keeping her pressures up okay on her own. They are also trying to back down on keeping her so heavily sedated. She is on so much sedation and all of your vital signs are lower when sedated. Weening her completely from her pain medications will be a big task though since she is very addicted at this point.

Although slow, I could not be more happy with Eden's progress at this point. As her nurse yesterday put it, "we are on Eden's schedule. If we do something she doesn't like, she lets us know. She is getting better, just slowly. Eden likes to stop and smell the flowers, play with the butterflies and pick the roses along the way." Dr. Pearl is going to do another x-ray in the morning and decide then if he wants to close her sternum tomorrow or wait. It will depend on how much fluid she still has and whether or not he thinks there will be too much pressure yet to close it. I will find out in the morning.

We love and appreciate each of you for your kindness and support. The outpouring of support we have received from friends and strangers has been very humbling. A casual acquaintance, to say the least, from the gym gave me a small gift for Eden today with two pair of hand knit booties she made for her feet. She said she just wanted to do something to show her concern and support. How thankful I am for people's example to me of the Lord's love and care for His children.

Saturday, June 21, 2008

Ode to Eden

Make an on-line slide show at www.OneTrueMedia.com

Pinch Me Please

I took a video of Eden's little heart beating yesterday and I am trying to upload it so you all can see. I am having trouble cutting it down to size though so bare with me. I think you will find it interesting because it amazes me every time I look at it. She continues to do well and I keep praying with all my strength that it stays that way. They are starting to ween her little by little on some of her medications, but the still keep her heavily sedated. If my sternum were wide open, I would like to be sedated as well. Dr. Pearl's plan is to take the stent out of her sternum today and sew he skin back together. This will allow her sternum to begin moving together with the hopes of wiring it shut on Tuesday. I hope she handles this well today because it can be a shock to their little bodies, especially if their heart is swollen from all the trauma it received. She is peeing well too and that needs to continue in order for her to get rid of her swelling. All in all, her doctors and nurses tell us that we still have a very sick baby, but she is getting better each day and doing exactly what they expect of her. Way to go Eden!

We just returned from visiting with our princess and Pearl did take the stent out and sew her skin up. She did as well as is expected. Her numbers dropped a little, but nothing out of the ordinary we are told. I forgot to mention that her envos (O2 saturation to the brain) was in the mid 60's yesterday, right where it should be. It is 49-50 right now, but climbing since the skin closure. She continues to pleasantly surprise everyone. Personally, I knew she always had it in her she just needed to get her very sick heart fixed.

We thank you again for your love and kindness to our family. I pray that the Lord's sweetest blessings will be with you for your service to us. I rely on the faith and prayers of each of you more than you will ever know so I thank you.

Thursday, June 19, 2008

Believe It or Not!

I hope I don't jinx anything by saying this but...

Eden is doing well! She is doing exactly what they expect her to do at this point. Now, that's a first. Her nurse Michelle said today that "frankly, we are all a bit surprised at how she is doing. It's so out of the norm for Eden." No matter what, she has beat the odds just making it to two days post-op when at one point it looked as though she would not make it out of surgery. I can't tell you how proud I am of Eden. She proves herself as one special little lady every day. I considered her to be my hero before, but she has taken the word "hero" to a new level for me. I am just a proud mommy I guess. No real changes for Eden. They are keeping her very sedated still and watching to see how her body reacts to post open heart surgery. They manipulate her medications now and again and have began weening her ever so slowly on certain things. I don't know if I mentioned this before, but she has a small pace maker type device helping her heart to fire at a constant pace and they are turning that down little by little. Because the heart is so tired and stressed from surgery, it is quite common to have a temporary pace maker. Dr. Pearl is thinking of removing the stint holding her sternum open tomorrow and sewing her skin together. They will see how her heart handles this and then talk about sewing the sternum and skin shut. It can be very stressful for the heart to have the pressure of the bone again so they take it slow. Slow and steady works best for Eden. She is peeing more today than yesterday and her envos is slowing rising. The envos measures the oxygen saturation (O2 sat) to the brain and obviously that is crucial. In my crash course on pediatric cardiology, I learned that 2/3 of our oxygen saturation should go to the brain and 1/3 to the body. As I have stated before, a normal person's O2 sat is 100. Before surgery, Eden's hovered anywhere from 75-80. She is now in the low 90's. Therefore, they would like her envos to be in the low 60's. When she returned from the OR it read 15!!!! Yesterday it was up to around 44 and today it is in the mid 50's. If you look at her pictures post-op this is that huge tape looking thing on her forehead.

I have been so uplifted and sustained from all of your sweet and encouraging comments. I look forward to reading them as they really do boost my spirits. I have been very happy the last two days, but guarded at the same time. It's sad, but I am so nervous to get too hopeful as I know how emotionally difficult the let-downs are. Call it mother intuition or the whispering of the spirit, but part of me thinks that we are not going to have too many problems this go around and that it is okay to be excited and hopeful. Such a game! I fell like I have aged 10+ years in the last three days and I NEVER want to replay Tuesday again for the stress and worry, but I would ALWAYS welcome the comfort and peace the Lord provided that day. I will never doubt again that the Lord loves us and that He blesses us daily. I hope I have learned to better recognize and thank Him for His tender mercies in my life.

Wednesday, June 18, 2008

Feisty Little Lady

A few photos for your enjoyment. Warning - open sternum photos!

You can see just how much fluid she was carrying.

Post-op "ants."

Her open sternum. If you look close enough you can see the shunt holding her sternum open to the right and her heart in the center.

Our champion minutes after surgery.

Mom is back.

Eden is doing better than most expected at this point and we are so proud of her and grateful to our Heavenly Father for this blessing. She is still in a very critical time in her recovery, but every hour that passes is better for her. Once again, she is hooked up to millions of bells and whistles and a few new things that she did not have after her first surgery. She has what is in essence her pace maker. It is helping her heart to fire in a normal rhythm. We are told that this can be normal since the heart undergoes so much trauma during surgery. She also has a nitric oxide machine that helps her body get rid of the carbon dioxide in the blood. She is still on the ventilator, but they said that her chest x-rays looked better as the night progressed. She just got another x-ray as I type so we will see the progress. Her medicine tree is full, but I would have to say not as many medications as last time. Also, if you remember from the last go around, we did not have much pee pee for a while, well little miss is peeing much better at this stage of the game. She has two chest tubes and a tube from her belly draining all of the fluid from surgery. Dr. Pearl left her sternum open again, but this time he has a small shunt holding it open so the gap is about 2 inches and we have full view of her beating heart. Not long ago, Eden decided that she wanted to wake up fully, not a good idea when your sternum is 2 inches open! She got quite ornery, feisty and agitated so they had to sedate her very heavily. They actually had to use a sedation that temporarily paralyzed her until her other meds could kick in. As you might remember me saying, Eden is a bit of a junky so she needs LOTS of drugs to feel the effects. Although Chris, her nurse, was not happy to see her awake, she did like the fact that she had enough energy and fight to wake up 12 hours after open heart surgery.

We have come quite a ways from not thinking she would make it out of the OR last night. We are so happy that she is doing well, but we are also very scared to get too hopeful. We have had so many "false hope" experiences that it is hard. We do know however, that the Lord is blessing Eden immensely and He is answering many of the prayers so many of us have offered. We still do not know which way this will go, but we know we are watched over and this offers us much peace and comfort. We are so proud of you Eden.

still no phone call

Dad here -

Isn't that a great statement! No phone call from the hospital. Looking back to last night it was really all quite amazing. First off, Dr. Pearl at one point thought the entire surgery was pointless; Second, after starting the surgery and facing the hurdles he did, he didn't think she would make it out of the OR; and Third, we are still here fighting a good fight.

As many know from previous posts, post-op babies look horrible. You know Eden was really bad prior to the surgery when she actually looked better after her surgery than before! Before going into surgery she looked as though she was going to 'pop'. In fact, as the nurses and doctors started to put new lines in they said every time they poked her she would just leak fluid. Once they started to operate the fluid just came pouring out of her incision. Since she was able to shed so much fluid during the operation, she come out of surgery looking more normal and less swollen than she has in months.

The comedy of all comedy - does it ever end? To top things off last night we came home, at 2am, to a sick Emerson. Needless to say, she was up all night. An interesting fact about the Ridgway household: Keisa has never had the honors of one of our children throwing up all over her, this, of course, has been reserved for good old dad. Everyone can still rest easy because this time tested tradition is still in tact! Emerson once again decided to wait and puke all over me while I was holding her this morning! Funny how a little puke can actually bring a smile to our faces!

I will let Keisa update from here on out, she is much better at this than I am, but I will have to do for now... it's been a looooong night.

Again, thank you for all your prayers... we know miracles happen.

Tuesday, June 17, 2008

ants on an ant hill

Dad here -

If you could have my vantage point you would be in awe at the activity in front of us. It's all quite a blur; 12 - 15 people running around one little girl. Not to sound too foreboding, but it has not been the best of nights. As you have read, it has been quite an emotional roller coaster for everyone. So much to say, and if any of you have ever been in some traumatic experience where time actually slows down and everything happens in slow motion - like a car accident - then you may better understand what we are experiencing this very second. Every sound, scent, color, and action is happening in real time, but feels like it's in super slow motion - it is being burned in my mind forever.

Dr. Pearl came in and started telling us how the surgery went... he said, "at one point I thought to myself, 'what am I doing here?'" because her heart is so sick and enlarged by the past few months trauma. The aorta repair went smoothly, but the repair to her heart was extremely difficult and with all the fluid from her body (being so swollen) it was extremely difficult to even cut into the heart and do the actual repairs. In the end, Dr. Pearl was very surprised that she even made it out of surgery - as are we. During the surgery we received multiple updates with each one becoming more ominous than the previous, by the time they gave their final report we were certain she wasn't going to make it out alive... but, she's a fighter and she made it off the by-pass machine and is fighting a good fight.

They have attempted to repair all the holes, patch the ascending aorta, remove and patch the pulmonary artery and fix the two valves within the heart (mitral and tricuspid). Due to the resistance in her aorta, her heart was forced to work extra hard over these past months; thus, like any muscle in our body when worked, was very enlarged. In our biceps this is a great result; however, in a little girls heart this has serious implications to her long term health. Due to the amount of fluid retention and long term stress on her organs we will have to wait and see what the overall outcome of the surgery will be. Currently, we know, there is some minor leaking in both the valves which is better than what Dr. Pearl had expected going in.

The next 24 - 48 hours will be very telling for Eden as her heart now has to work on it's own and her little body tries to recover. Dr. Pearl thinks we should be close by as things could worsen very quickly. My impression from the post-op discussion is that we will be lucky if she makes it through the night. I hope and pray that my impressions are wrong.

I'll be honest, I have expected the worst today since most struggle through this surgery with a healthy body. However, Keisa and I feel oddly at peace with how things are progressing -- now, this doesn't mean it isn't extremely taxing, just that everyone has tried all they can do to fix our little girl and we know she has received the best care she possibly can. Because Phx Children's is a hospital exclusive to children, there is never waiting for services, she never shares with adults, for children are always the priority.

We thank you for your prayers and concern. You will never know what a strength you have been to our family, we couldn't do it without you. We are tired and I hope this post made sense, but we will continue to keep you updated as the night progresses and hope things improve.

Update #3

The news has not been as good as we would have liked, but she is still hanging on. We had an update a couple of hours ago that her heart is very hypertrophied (enlarged) due to it having to work so hard in order to function. Because of this, she was not tolerating the repair of her holes so well. At that point, they were not very optimistic. However, Eden was not ready to quit. Our last update informed us that he was able to finish her repairs and he was working on her pulmonary artery patch. She is still on the bypass machine and it will be a true test if they can turn it off and her heart can function on it's own. In our last update, we were also told that if and when she gets back to the room she will be very, very sick and could even come back on the ECMO machine. This is a machine much like bypass that does the works for her heart and lungs so her heart can rest for a while. Thank you all for your support and prayers. We appreciate you staying with us.

Update #2

Well, I was mistaken lat time in saying that she was on bypass. She was put on bypass around 5 pm. Dr. Pearl is working on her aorta right now and they said it would not be before 10 pm that she is finished. She had quite a bit of scar tissue around her heart from he previous surgeries and it took that long to just get in. If you are up late, check in as I will update.

Update #1

They took her back about 1:05 pm and it took a little over an hour to get her situated and prepped. They put in a few new lines and IV's and she is now on by-pass. They are going to cool the room down and fix her aorta first and then warm her up and move to the heart. This is not much, but they do not tell us a ton. I guess we don't need to know everything that goes on in the OR...what we don't know is probably better in this situation. More to come!

Day of all Days

The day is finally here, full of hope and anticipation.

We found out late last night that Eden will not go back to surgery until 11 am because Dr. Pearl has to do an unexpected procedure this morning. Now, we are just waiting and wondering.

I will post throughout the day, but know that it will be a long day and she is not expected back to her room until around 7 pm.

Thank you all again for your support, faith and prayers. What a comfort they have brought us throughout this journey, but we feel them more than ever today.

Sunday, June 15, 2008

The Gory Details

We are still set for 8 am Tuesday morning so I wanted to give the details of Eden's surgery.

As I have said before, we are told time and again how risky this surgery will be and just how sick she will be post-op. Dr. Pearl is not sure in what order he is going to do things, so I will just list them as they make sense to me. They will take her back and get her situated in the OR by placing any more IV's and lines that she will need. I assure you that she will be "highly decorated" after surgery with lots of tubes and wires running every which way. Once they open her chest up again they will put her on the heart-lung bypass machine. This machine does the work for the heart and lungs so they can work on her. It is necessary for her to be on bypass the entire procedure to do all of the repairs. They will first open up her heart and work on the holes. She has one large hole in between her right and left ventricles and one large hole between her right and left atria as well. They will probably have to patch these as they are too big just to sew together. Dr. Pearl will then have to work on her mitral valve. This is the valve that separates the left atrium and ventricle and is crucial to her overall post-op success. This is also the most "ify" part of the surgery. Pearl is confident from looking at her mitral valve during her last surgery that he can take tissue from elsewhere in the heart and "make it work." Her valve is just not big enough right now and a little leaky. Pearl told us that this will be the telltale piece to whether or not she has a good repair. The scary thing is that if it just isn't possible to fix her valve or it does not turn out to be a "good repair," there are really not any other options. Once he finishes in the heart he will sew that up and turn to the aorta. She has some narrowing in the ascending section of her aorta. This is the major vessel coming off the heart that pumps blood to the body. The ascending section is the piece right off the heart. Because of the narrowing, he will have to make it larger by patching a bigger piece in. In order to do this repair, they will have to put Eden into circulatory arrest. This is where they cool the room down and stop her heart while protecting her vital organs and brain. This has to be done because he can not have blood pumping through the aorta while he is fixing it. Once that is done, they will start her heart again and turn to her pulmonary artery. If you remember from her first surgery, they put a band on her pulmonary artery to protect the blood flow and pressure to her lungs. Now that her heart will be repaired, they can remove the patch. I liken it to putting a rubber band on a hose. Unfortunately, when he removes the patch her artery will not just pop back into place. He will have to patch that open as well. When all of this is complete, they will take her off of the bypass machine and prepare her to return to the PICU. Pearl said that he would like to sew her up, but it will depend on how well things go and her swelling. They will also have to look at her incision to see if it can be closed easily since she had issues before. All of this will take 7+ hours and they hope to have her back to the PICU around 3 pm.

I just re-read that paragraph and what an ordeal my little Eden is to undergo. Hard to believe that something so small can withstand so much. I also have to say that I get more and more nervous, scared, anxious and worried with every passing minute. It is so unnatural to send your baby off and completely put her life into someone else's care. I know that so many are praying for Eden, but I ask now that you please pray for her surgeon Dr. Pearl, and the surgical team that they will be guided and inspired to do their very best work during her surgery. I am so thankful for the Lord's strength and comfort at this time. I have no doubt that He knows and loves each of us and desires to help us through our trials.

Thursday, June 12, 2008

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.

Tuesday, June 10, 2008

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!

Monday, June 9, 2008

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.

Friday, June 6, 2008

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.

Wednesday, June 4, 2008

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!

Monday, June 2, 2008

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:

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