Feel the Magic

Can you feel the magic of Disneyland through your computer?

We are having a very wonderful time here at Disneyland.  The weather has cooled off a little so it is much nicer.  It was about 94 yesterday and although that is not hot for us, it was a little too warm for walking around Disneyland and waiting in line.  This is quite hot for Anaheim I am told.  Today was much better at about 80 and tomorrow is going to be in the high 60's.  Now that is full on winter for us!  We did not tell Ainsley and Emerson where we were going until we pulled into the hotel and they knew this was our "Disneyland hotel."  The suspense definitely added to the excitement.  They have loved having mommy and daddy all to themselves and I have to admit that it has been very good for me and Marcus as well.

As for Eden, she has had more visitors since we've been gone than normal.  In the last two days she's received visits from two of her aunts, her Grammy and her grandpa Bryant.  She is doing well, just being kept stable and quiet.  They are not letting anyone hold her this week as they want her to rest.  She is up to 22 calorie formula and 22 cc's an hour with no diarrhea.  All of her meds are pretty much the same and she still has her same ventilator settings.  Her pulmonologist came in yesterday and hinted to the possibility that she would be on the ventilator until after her next surgery.  Although this is not what we want at all, I have thought this could be the case so I am not completely shocked.  We miss having our little Eden with us for her first trip to Disneyland, but we have bought her quite a few cute little gifts and I am sure she will have many trips in the future.  We did learn that Disneyland offers a "disabled child" pass for the family of a disabled child and when we get that, there is no more waiting in line for the Ridgway family.  Now who wants to come to Disneyland with us?  Not to make light of this, but it is a really nice thing that Disney does for our families.

Thank you all for helping us watch over Eden and take care of our home while we are gone.  We love and appreciate all of you and your thoughts, faith and prayers.  We need them and they sustain and bless us.

Glamour Shots

She looks so comfy despite all the tubes!

Look at that bow. Now that is bling!

She has Minnie Mouse socks, but they fall off her little feet so we rest them at her side.

Even with the puffiness, she is so stinking cute!

She loves to be held by mommy and mommy is very happy holding her.

Latest and Greatest News

She is still a little puffy, as you can see in the pictures, but hopefully that will be gone soon.  They have been giving her some diuretic and a little dopamine to get her the urinate more and it seems to be working.  She always takes a few days to get her puffiness off.  She is back to full strength on her formula feeds and no diarrhea.  I sure hope it does not come back and they can increase the calorie content of her feeds.  She is at her 20cc's max so we are happy in that regard.  They still have her ventilator settings a little high because of the swelling, but Dr. Pearl said that he would like to make Friday their goal for attempted extubation again.  Ia m going to be praying hard that this will happen.  I know we have wanted and asked for so many miracles, but I would love for this one to happen as well.  I know she can do it as she breathed completely on her one until day ten so she has it in her.  They are still weening her Versed medication.  They are putting her on a medication that makes her drowsy, but does not have the narcotic effect, which means not so many withdrawls.  I love holding her every day and she loves it too.  She normally will look at me for a few minutes so we can chat, and then she will drift off into such a deep sleep that she is almost snoring.  It's horrible having to put her back and say good-bye.

Now for the really big, some might think crazy news.  Marcus and I have made a very last minute decision to take the girls to Disneyland for a few days.  We are going to leave today after church and return on Thursday early afternoon.  It was a very difficult decision for me to leave Eden, but I also know that Ainsley and Emerson and struggling and need time with mom and dad.  It has been so hard on them and I forget that sometimes so this is going to be a good get away for all of us.  I have to give all of the credit to Marcus for speer heading it and convicing me of leaving.  Now that I am committed, I can see how good it will be for all.  I have both grandmother's going to be with Eden each day so she will be well loved and taken care of and of course she will get lots of gifts upon return.  I have also decided that I am going to stop pumping as of today.  This too was a difficult decision for me, but I have SOOOOOO much milk, literally enough for a year supply, and it is starting to get hard to keep my supply coming.  I think I have enough to last her for a year, or very close to it and she will have to be bottle fed.  It was hard to face it that she would probably never breast feed, but her doctors will have to fortify her breast milk with a special high calorie powder so that will mean a bottle.  As long as she gets my milk, that is what is most important to me.  I guess I feel like it was the only thing I was really doing for her right now, so it was hard to let it go, but freeing at the same time.

Please continue to pray for little Eden that her lungs will improve and allow her to breath on her own.  We love each of you and thank you for blessing us with your thoughts and prayers and faith.  It is so humbling that people we do not know personally are thinking, praying and exercising their faith on Eden's behalf.  Thank you from the bottom of my heart!

Birthday Girl

Eden is 8 weeks old today, but who's counting.

This ordeal is such a roller coaster, but I have decided to work extra hard on changing my attitude.  I am not going to let this get me down or make me unhappy any longer.  I choose to be happy and think only positive of the situation.  You will still get the cold, hard facts, but I can't let this make me forget how blessed I am.  It is a great gift and blessing at this point every day we have with Eden and I need to make the most of it.  I have no doubt that what the Lord wants for our family is the right thing and I am also very confident that Eden will recover and get healthy, it is just going to take time, LOTS of it.

Eden's Intensivist said today that she has a "very complex form of heart disease" and they are stumped lots of times with her.  She is definitely making them earn their money.  She seems to be doing well with the Pedialite/Vivonex mixture.  She was on 1/2 and 1/2 when I arrived, but they bumped her up to 3/4 formula and 1/4 Pedialite.  I hope she can kick the diarrhea because she needs her nutrition badly.  She also had one of her I.V's, pumping in her lipids,  infiltrate in her arm.  This means that the I.V. came out of the vein and the lipids were flowing into surrounding tissues.  They are watching it closely as lipid infiltration can be very dangerous and damaging to the tissue, but they think they caught it in time.  She was also getting lots of extra I.V. fluid during the diarrhea and now she is puffy again.  To help her start peeing and lose the swelling they have given her a diuretic drip.  They are also up on her ventilator settings due to the swelling.  Hopefully she will let go of the fluid in a day or two.  I really have the feeling more and more that her next surgery is going to be sooner rather than later.  All of these issues might just lead back to her heart defect and fixing it could be the only way that she will fully recover.  Her team of doctors talk about that quite a bit, but they are not ready to commit as it is a big step and no one knows if she is healthy or strong enough to withstand another open heart surgery so soon.  Time will tell with this as well.

It was lovely to hold her for a long time today,  She slept so soundly in my arms and I just looked at her for hours.  The only reason I put her back was my URGENT need for the ladies room.  I dolled her up in a new hair bow (thanks to Auntie Lara) for her birthday and sang "happy 2 months" to her.  Please keep praying that she will get stronger and be able to overcome some of her hurdles.

More Diarrhea

Well, never a dull moment with little Eden.

After her bout of diarrhea on Tuesday, they sent a stool sample away and nothing grew so they started her on feeds again.  She was back up to 20 cc's an hour and while I was there today she began having diarrhea again.  No one knows why exactly so they think they will try diluting her formula with Pedialite thinking it might be a little stomach bug.  She was struggling today and it broke my heart.  Her oxygen saturation levels, which is how much oxygen is traveling to her body through her blood, was also really low today.  Our oxygen saturation should be 100%, Eden's was running between 65-70% and it should be at about 85%.  She was also working really hard to breath and her respiratory rate was so high so they increased her ventilator settings and that really helped.  Her incision is not looking very good either.  As you remember  she had to have a plastic surgeon take her pectoral muscle and make flaps over the incision since they had scraped away skin with her infection.  Well,  the muscle flaps look great and are protecting her bone very well, but the skin is so thin from being scraped at that it is not healing like a regular incision.  It looks like a bad flesh wound now and will heal like one.  Kind of like a bad scraped knee or elbow.  I hate to see that large wound on her chest, but at least this is not her final incision and they say it should not affect her next incision from healing properly.  She has a wound nurse treating her every day so hopefully it will begin looking better.  The icing on the cake for my little princess is that she has horrible diaper rash.  Her poor little bum looks absolutely raw.  I feel so bad for her and all that she has been through.  I guess I am just really depressed right now because I feel like it's her turn to catch a break.  I have to remind myself that we have seen little miracles with her along the way and her pace is obviously going to be slow.

I am sorry that I sound so down in the dumps right now, but it seems to get harder for me as time goes on.  I miss her so much and long for her to be home with us and a part of our family.  I get scared too because I feel like we, me included, are becoming detached from her and like maybe she doesn't even know who I am anymore.  She just lays in her bed all day and I hate that.  Someone in  our family has been able to hold her once a day and I am so thankful for that.  As with any big challenge, it's always hard to remember that life goes on despite our pain.  I relish in the many blessings our family has received during this time.  We are so blessed to have almost all of our family here local and my mother and mother in law have been angels in taking turns to go sit with Eden or watch the girls.  We have also received service beyond measure from our church (ward) family.  They have done so much to love and serve us and it is so humbling to have them serve us when they are facing trials of their own.  I have also met so many wonderful, strong people on the PICU and I am honored to associate with them and draw strength from them.

We will get through this and Eden will one day be healthy and home.  I believe that!  I am so thankful for all of you and your support and prayers and faith.  It helps me to weather the storm and find joy in each day.  I know that the Lord has a plan for Eden and our family and I have to trust Him.                                                                                                                                                                        

And Then There Were Five

A verse from a Queen song sums it up...

"Too much love can kill you!"

We lost one of our six chickies yesterday afternoon due to being loved to death.  We are not quite sure what happened, but Ainsley was playing with it she says it just didn't wake up any more.  As it is with all small, cute things, the girls love to squeeze the chicks and I think she just suffocated it.  We joked that we needed a ventilator for our chick as well.  Needless to say, Ainsley was devastated and cried that "Ariel" would not be with us any longer.  We assured her that Ariel went to heaven and we remembered to pray for her last night.  We also had a small memorial service in the back yard where we buried it.  Boy did that bring back good childhood memories of all my pets and every time we had to bury and memorialize them.  My parents yard is a regular pet cemetery by now.

Emmy hasn't quite learned how to hold a chick yet!

Ainsley LOVES the chicks and doesn't put them down.

They are like little babysitters, just as long as they don't poop on them.

Daddy's three "chicks".

Who's Stinking Up the Neighborhood

I have an incredibly funny story to tell, but first let me give a quick Eden update.

It was absolutely marvelous holding her today and I don't think she has ever slept more soundly than in my arms.  She was almost snoring in fact.  They are still doing sprints with the ventilator in hopes of attempting extubation again at the end of the week.  She was having diarrhea this morning so they turned off her feeds and sent a stoop sample out to see if she has a bug.  Once they know (tomorrow morning) she will either start her feeds again or be given an antibiotic.  Her nurse today thinks it is really nothing, just her little tummy getting used to a higher calorie form of her Vivonex.  Other than that, she is holding steady and looking as gorgeous as ever.   Thank you all for praying for her and for having so much faith in her.  She needs all of your thoughts and prayers as she has fought through so much already and getting off the vent is going to be a challenge.  Her surgeon did say today that he is "cautiously optimist" about her progress.  I am going to take it and run!

Now, sit back and enjoy this story.  There is never a dull moment at the Ridgway's.  Last Saturday Marcus bought 6 baby chickens.  They are such tiny and adorable little chicks and the girls just can't leave them alone.  They hold them every chance they get and almost smother them.  Well, Sunday morning the girls woke up and immediately wanted to hold the chickies, which we did.  Once we got them put away, it was time to shower and get ready for church.  After showering, I was getting myself and Ainsley ready when we started to smell something very suspect.  We went to the back door, which was open, poked our heads out and I yelled 

"Who's stinking up the neighborhood?"  As we were walking back into the bathroom, I looked down the hall to see mounds of smoke coming from the den.  I knew right away that the chicks were in trouble and was afraid I would see them crispy fried.  We had them temporarily in a large rubber storage container with a heat lamp attached to the side.  The heat lamp had fallen into the container and burned a hole all the way through the container and through my carpet.  Our house was about the catch fire!  I called Marcus right away as he was already at church to come right home.  When he got home, I was yelling "I hate these chickens!", the girls were crying "Are the chickies burned and dead?", the chicks were "cheeping" for their lives and Marcus said very calmly "At least the house didn't burn to the ground!"  It really is funny now, but at the time I was furious.  Our house is fine other then the carpet, which I am glad is in the den and not the middle of the family room.  All 6 chickens survived, but we have yet to see if they suffered smoke inhalation and brain damage and won't lay eggs (which is why we got them!)  Once again , I realize that miracles and blessings come in all ways.  If that would have happened after we left for church, it really would have been a disaster.  The Lord has helped the Ridgway family once again.

I will post photos of the chicks.  They are so cute.