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.

Photo Shoot

We are back in business.  Here are the pictures I promised.

She is almost cord free except for that ventilator.

She looks like a big girl in her sleeper, but don't be fooled as it's a preemie size!

Is daddy happy or what!

I think we need a little gel for that crazy hair, what do you think?  Us Ridgway's have a ton of hair I guess.

My Little Princess

I hope you enjoy all of the new photos.  I think that my little princess is looking very beautiful.

Eden is doing well, all except that darn ventilator.  She is on 20 cc's an hour for her feeds, which means she's on full feeds.  They have also gone down on one of her main IV blood pressure medicines (Milrinone) and they are replacing that with another oral heart/BP medicine.  The good thing about that is that she can not leave the hospital on Milrinone, but she will most likely be on a couple of oral heart medicines until her heart is repaired.  Not that she is coming home any time soon, but it's a start.  They will also take out another IV if they can phase her off the Milrinone.  They are trying to not give her as much pain medicine and make her learn to calm herself.  However, they will keep her on a low dose of pain medicine as long as she is on the ventilator because it is uncomfortable for her.

It has been so nice to hold her the last few days.  I believe that she needs to be held and that it will help her to get better faster.  Last night, I also took it upon myself to put a hair bow in her hair.  I also asked if she could be dressed.  The wonderful night nurse put a darling sleeper on her and now she looks so cute, like an actual little baby.  The funniest thing is that when I put the hair bow in she looked at me like "now what are you putting on my head!"  I simply told her that she is a girl and this is completely a vanity issue for girls to look cute, especially with all of her hair.  Today was a really special day for daddy as he was able to hold her for the first time since before her surgery...6 long weeks ago.  He must has been very happy because her fell right to sleep.  Eden was watching him the entire time.

We have seen so many blessings in our lives through this experience.  We love and appreciate each of you and your faith and prayers for Eden.  We know that the Lord has a hand in Eden's recovery and will bless her as He sees fit.  Thank you all again for being examples to us and please keep praying that she will be strong enough to come off the ventilator soon.

Extubated No More

I am very sad to say that they had to re-intubate Eden last night at about 1 am.  She was just struggling too much and could not continue breathing without assistance.  They say that she went into respiratory failure.  I hate the word, failure, it's so harsh.  They also say that she has three failed attempts at extubation.  There's that word again.  I personally think that Eden is anything but a failure!  Basically, at this point they do not know why Eden couldn't breath on her own.  Her brain CT scans have come back normal and fine and all of her heart tests show that it is not her heart causing the respiratory issues.  They also do not think that it is an upper respiratory issue.  Once again, Eden has stumped her doctors.  Other than this, she is doing well.  They have reduced some of her blood pressure medicine and she is up to 18 cc's and hour in her feeding tube.  They will put her up to 20cc's and then hold her there as it is considered a full feeding.  I have decided that I am going to start putting bows in her hair because too many people refer to her as "him."  Who names their sons Eden?

It has been a very emotionally draining day for me.  I did get to hold her though and that made me feel so much better.  I know that Eden will do things on her own time, I just have to be patient.  We continue to pray that her lungs will heal completely and she will finally be able to breath unassisted.  Thank you all for keeping her in your prayers.

Extubated Once Again

I am VERY happy, but unfortunately a little guarded as I say that Eden is extubated once again.  

They took her breathing tube out at about 1 pm this afternoon and she is still holding her own without it.  As we all know by now, she struggles to breath on her own and she is having a little difficulty, but nothing to make them put it back in at this point.  In preparation for removing it, they turned off her feeds this morning and stopped her Versed (drug) drip.  Once they got the tube out she was pretty agitated and they said that it could be because she was hungry and wanting some drugs.  Unfortunately, most of these little babies go through some degree of drug withdrawls since they are medicated so heavily for so long.  She doesn't really know how to calm herself right now since whenever she is upset they give her something.  It's sad to see, but the reality of open heart surgery for a newborn.  Her first blood gas following extubation did not look too great so they put the cannulas in her nose to give her some supplemental oxygen and they also put her on CPAP, which helps inflate the lungs to their fullest, I think.  Her last gas looked a little better though and they said as long as she either stays the same or improves they will not re-intubate.  If her gases start to get worse, it is a possibility.  I am hoping that we do not get a phone call tonight, that would be good.  I have so much faith and confidence in my little Eden and I know that she can do it.  I am working on positive thinking only.  Other than this, she is doing much the same.  I am told that they have a little yellow bow in her hair today so I am going to snap some "glamour shots" tomorrow.  I can't believe I haven't seen her for 3 whole days.  I am dying to kiss her face and talk to her and maybe even hold her.

Emerson is doing better, but this bug is a nasty one.  Her fever has finally subsided and she is through vomiting, however I am hesitant to jump right back into eating and drinking although she cries for food and more water.  That is by far the hardest part of having a vomity child is to tell them they can't eat or drink when they don't understand why.  I hate it!

We appreciate each of you for continuing to remember Eden and our family in your thoughts and prayers.  They really do work wonders.  Pray that she will be strong enough to breath on her own indefinitely.

Unexpected Change in Mommy's Plans

Change of plans at a moments notice - just one of the joys of motherhood.

My little Emerson is suddenly very sick.  She was up all night with a high fever (104) and vomiting.  Marcus and I combined for about 3 hours of sleep if we're lucky.  Emmy is so sick and lethargic and it has been really tough to get her fever down,.  We finally had to resort to rectal suppositories as she can vomit those back up.  Now that I am germ infested, I don't want to be around Eden.  I would hate to give her something at this point.  So, instead of me being able to see and hold her today, Grammy is going to go in my place. I am a bit disappointed as I was so looking forward to it.  I called this morning to find out that she did fabulous on her 4 hour sprint and her gases afterward were some of her very best.  They also plan to extubate her early this afternoon and I will miss it.  This is what happens sometimes to a mommy.  I just have two little ones to worry about today.

Please pray for little Eden that she will extubate successfully and be breathing on her own like a pro. 

My Baby the Sprinter

Do we have another runner/sprinter in the family?

Of course I say that only jokingly, but Eden has proven to be a sprinter today.  After not doing so well on her first attempt last night, she passed with honors this morning.  They put her on a 2 hour sprint with the ventilator turned off and she went past the time.  They turned the vent back on shortly after 2 hours to let her rest, but they were so impressed.  She kept her respiration rate in the 30s-40s and that is very acceptable.  They also did a blood gas after and it came back good as well.  They started her on another sprint this afternoon at 4 pm and this one is to last four hours.  It's just about 8 pm here so I am dying to call and find out how she did.  We spoke with Dr. Pearl today and he does not want to do anything too quickly with Eden so they are going to leave the tube in tonight and possibly tomorrow and do a few more sprints before removing it.  They also took a few viral swabs just to make sure that she does not have any infections brewing.  My thought is that they want everything to be nearly perfect before extabating her because we know how sensitive her respiratory system can be.  She is still doing well with her feeding tube and it might be soon that she can have my breast milk once again.  I sure hope so as my deep freeze in the garage is nearly full and I've had to juggle my food elsewhere to accommodate the milk.  She just might be drinking mommy's milk until she's a teenager!  Remember that she got Chylothorax after surgery and they had to take her off the milk and put her on Vivonex.  They will wait at least 6 weeks and then check if her lymphatic system is healed.  It could be as long as 9-10 weeks though.

Now for the best news of all.  I spent the last two days away from the hospital and with Ainsley and Emerson.  It was so needed for all of us!  They are feeling the effects of the stress and anxiety and I could tell that having mommy home ALL DAY was a big treat.  Anyway, one grandmother each day went to be with Eden and they were able to hold her!!!!!!  Can you believe it.  She has not been held since Easter.  I am so happy that they had that time to love on her and I am SO EXCITED to hold her tomorrow.  I just might not come home until very late because we have a lot of catching up to do.  I feel so helpless as a mother ever since she was born and holding her will fill a big void in my heart.

I know that we have seen a miracle with little Eden's sudden progress.  Dr. Lindblade, a cardiologist, came in again today and said that they just don't understand why she is all of the sudden doing so well.  They can't explain it, but I think I can.  It's because of all of the faith and prayers of all of you and because of the special fast and prayer day we had on Sunday.  It's amazing how she started doing better on Sunday.  Coincidence, I don't think so.

Marcus and I are so grateful for all of you.  You are getting us through this.  I hope that we have only good days ahead.  It's hard to get too excited because of past experiences, but I will relish in today and go to bed a happy mommy.

Random Act of Kindness (and pictures)

I was reminded what a true friend is today.

Marcus and I bought some flowers a few weeks ago to plant in our two pots on the front porch.  However, the flowers have sat on the front porch still in their little containers ever since without us having time, or energy to plant them.  Needless to say, they are completely DEAD.  Well, I came home today to beautiful petunias in both pots.  I don't know who did this very kind deed for us, but we are extremely thankful.  It brought a big smile to my face and made me so happy.  Thank you.

Now for our little Eden.  She continues to do well and Marcus and I don't know if we should be really excited or get a little nervous because of past experience.  I prefer to relish in the good moments though since they help me survive the scary times.  They have her up to 13 cc's in her feeding tube now with mild distention.  She has been a little gassy, but since she is still peeing and pooping as she should they will continue to go up.  Her ventilator settings have been lowered yet again and they tried her first round of "sprints or intervals" this afternoon.  This is when they turn to vent completely off and make her breath on her own for a period of time.  They wanted to go for 2 hours with her, but after about 45 minutes her respiratory rate was too high for their liking so they turned the vent back on.  If her blood gases look okay, they will try another sprint tonight sometime.  Marcus spoke with Dr. Pearl, her surgeon, this morning and he thinks that all of her issues are still tied to her heart.  It is just not as strong as it could be and they might have to bump up her surgery depending on how she does in the next week or so.  He is still confident that she can have a two ventricle repair, it just might have to happen sooner rather than later.  I am getting so ancy to hold her again so I think I might ask if it's possible.  I believe that holding her would help her to heal faster.  She needs her mommy to cuddle her and I need to feel her against my skin.

We continue to bask in the thoughts, faith and prayers of all of you.  We know that all of these positive strides are due to your prayers.  Thank you so much and please know that we are humbled and grateful for all of you.  Pray that Eden will be able to overcome the ventilator and breath on her own again.

I hope you enjoy the pictures.  Our little Emerson turned 2 last Friday, the 11th, so I felt that she deserved some blog time.

Emerson turned 2 last week the 11th.  Here she is with Daddy at her party.

Emerson LOVES flip flops and jewelry.  She is a girl after mommy's heart.

I've always though that Ainsley looks half dead when she sleeps.  She loves to sprawl out.

If you are thinking, is the younger one Emmy on the top bunk, you are absolutely correct.  Ainsley wants nothing to do with it and Emmy thinks it's a crib!

Extremely Perplexing

As you can see, we have given our blog a much needed face lift thanks to the help of friends.  I sure do enjoy the lovely tulips much better!

Well, I don't want to jinx anything by saying that Eden had another good day today.  I really am so happy that she seems to have turned a little corner, but I am also very hesitant in getting too excited because I know that backward steps can happen at any time.

When I arrived this morning I knew that I would be speaking to her cardiologist about the "big decision."  The team of cardiologists, surgeons and intensivists all met this morning to discuss little Eden.  Oh to be so popular!  Anyway, they did a repeat echocardiogram this weekend with the cardiologist present and he said that he did not see an abnormal gradient on the aortic valve and he did not see any muscle build up in the left ventricle either.  This was such good news for us.  He also said that they were extremely perplexed with Eden because she has suddenly started to do so well.  I just smiled, but I know that it has everything to do with all of you fasting and praying extra hard for her yesterday.  He said that they do not have to do the Norwood surgery right now and they are still planning on just one more surgery in about 3-4 months.  If she keeps ups the good work she could very possibly get to a point where she is just eating, growing and getting stronger.  We have always known she had one more surgery in front of her and if it can wait for 3-4 months I would be so happy.  They are also hoping at this point to keep the left side of her heart since people in general do so much better with a two ventricle heart as opposed to a one ventricle heart.

Eden is also taking a whopping 8 cc's in her feeding tube now with no stomach distention.  I am so proud of her today and I know that we have seen a miracle with her healing.  Marcus and I are so thankful for all of you and the faith you have in our little girl.  We feel that this is a direct answer to many prayers offered in her behalf and we know that we have witnessed little miracles.  Please continue to pray that Eden will improve each day and "perplex" her doctors once again.

Small Answers to Many Prayers

A quick side note before I get into the nitty gritty of our little Eden.  I forgot to say that if you do not have a Google ID and want to make a comment you have to mark the anonymous button at the end of the post.  We love to read your posts and they uplift and strengthen us so thank you.

I want to start by thanking everyone who fasted and prayed for Eden today.  What a wonderful, comforting feeling we had all day today.  I am so grateful for each of you and your concern and kindness for Eden.  We could not make it through this difficult time without all of your faith and prayers to support us.

We are hesitant to get too excited, but Eden had a good day and she looked absolutely fabulous when we went to visit.  Some of the swelling has gone down in her face and you can actually tell that she has a chin!  She is also up to 6 cc's through her feeding tube every hour.  That is still only about a tablespoon and hour, but who cares it's a big milestone for us.  Her belly has not gotten distended at all in a couple of days and that is so good.  It can be a very good sign of adequate blood profusion to the gut, which means that the heart is working pretty good.  They have also come down on a few of her ventilator setting, making her work more to breath and she is tolerating it well at this point.  Every time they make a change to the ventilator settings, they draw blood and do what is called a "blood gas" to see the amount of oxygen and carbon dioxide and other gases in her blood.  Eden's still look good, even with the lower settings.  Eden's chest x-rays also look so much better than they did a week ago.  I am by no means a doctor, but I have learned that if all you see is gray and no heart in a chest x-ray, it is bad.  That was Eden's last week.  Tonight, I could see the heart very clear and there was even black behind the ribs.

We know that these are answers to constant prayers.  We still have so much to overcome and tomorrow is a big day for us as all of her doctors will meet to discuss if the big Norwood surgery is needed.  What a testament this entire experience has been for me to the real power of prayer and faith.  Thank you all!

Side Note

I have a couple of "items of business" that I wanted to add quick.

1.  I finally added links to other heart babies so take a look if you feel so inclined.  Please remember that these heart conditions are very tender so the word "angel" before the first name means that they have passed on.

2.  I changed the settings on our blog to allow anyone who wants, member or not, to comment if the desire.  All you have to do is click on the word "comments" at the bottom of the post and you can write.

Have a wonderful day!

Thrown a Curveball

We've all heard the old saying that "life can throw us a curveball".  That began happening to our little family months ago.  The first curveball came in early September when we learned that Eden would have Down syndrome and a heart defect.  It's amazing how our perspective changes with time and experiences because I was not worried about the heart issue at all prenatally.  On the other hand, it took me quite a while to come to terms with her having Down syndrome.  What I wouldn't give now for a healthy Eden with only Down syndrome!  We experienced another curveball after Eden was born when we learned that her heart defect was much more serious than originally expected.  Last night's curveball was completely unexpected and so scary for the future of our little baby.  The cardiologists feel that most of her issues, especially her lung problems, are due to her heart not working properly.  If you remember, her surgeon decided against doing the Norwood for her first surgery because he liked her mitral valve's function.  Well, the latest tests show that the pressure from her aortic valve is very high and this is probably due to muscle building up in her left ventricle.  Basically, her heart is not very strong and her left side is having a hard time providing adequate pumping strength.  This has caused muscle to build up in the left ventricle over the last 5 weeks post-op and therefore too much pressure on the aortic valve.  If this truly is the case, she will need to undergo the Norwood to bypass the left side of her heart completely.  This is a VERY difficult surgery with a high mortality rate and unfortunately that does not bode well for princess Eden.  No one knows just how many reserves she has left.

Marcus and I are trying to stay positive about the entire situation seeing that nothing is set in stone yet and they are going to perform more tests before making any final decisions.  We also know that the Lord can trump everything and it's really his decision for our little girl.  People say that you have to "Give it up to God" or "Turn it over to the Lord".  I always thought that I could do that no problem if I had to, but I now realize that saying it and then actually letting go and putting the situation completely in the Lord's hands is so hard.  As a mommy I want to fight for her to stay alive and be healthy and I feel so completely helpless right now.  I realize that I need to cherish every day I have with Eden and hope that there are many, many to come.  I do know without question that whatever happens is the Lord's will for Eden and our family.  I have to have faith that His plan for our family is best.  Despite the fear, I am so thankful for the quiet feelings of peace and comfort that fill my body throughout the day.  I am amazed by little Eden and so proud of her and her strength.  She is teaching her mommy so much!

We will be having a special fast and prayer day this Sunday that the Lord's plan will be known for our little baby and that her medical specialists will know what to do for her to make her better.  I am SOOOOO thankful for all of you and your thoughts and prayers.  After a long, discouraging day today, I came home to beautiful flowers at the door and two wonderful cards in the mail just to say "thinking of you".  I can't adequately express how much all of your love, prayers and support mean to us.  Please pray for Eden as we enter next week and the decisions to come.

Keeps Us Guessing

As we travel farther and farther on this journey, I have had the great privilege of meeting so many amazing little babies with heart defects and their families.  I never knew that so many families were going through similar situations as us and I will never be the same because of this experience.  I am going to add some links to the blog for other heart babies.  Feel free to read their inspiring stories.  You will be amazed and uplifted by the strength and courage of every family facing such challenges as we face.

Our little Eden is truly a stinker pot!  She just keeps everyone guessing about what is really wrong and how to fix the problems.  For the most part, she is doing better.  Her thyroid is getting regulated and she has been able to tolerate her feeds thus far.  She is up to a whopping 5 cc's an hour.  Her blood work is looking so nice according to the doctors and nurses and her swelling is going down little by little.  They did put her on a continuous Versed drip.  This is a pain medicine/amnesiac so that she can rest more.  She was just becoming so agitated all the time and couldn't really rest properly.

The real issue we are dealing with at this point is her lungs.  They just don't look any better and that is concerning to everyone.  Her x-rays are still very hazy and they do not know why.  They would like to do a CAT Scan today sometime to find out exactly what is causing the haziness.  The easy fix is that she has been on her back too long and needs to lay on her belly for a while to move the fluid around.  The worst case is that the band they originally placed on her Pulmonary Artery is too loose and they need to open her back up to tighten it thus restricting the blood flow to her lungs more.  Once she has the scan and we have the results I will post.

Despite everything, I left the hospital with a very calm, peaceful feeling yesterday that everything will be okay.  I felt such comfort and plain old happiness that I haven't felt in a while.  I know this is because of all of your faith and prayers for Eden and our family.  Thank you again and continue to pray that they will know how to help our little "stinker" get better.

Houston We Have a Problem - YEAH!

Marcus and I have never been so happy to hear that they found  something wrong with Eden than we were last night.  They do blood work on her at least once a day and they always check her thyroid levels.  Children with Down Syndrome are prone to having low thyroid levels.  This was not a surprise for me.  Every test has come back with normal levels, but low and behold last night's blood results showed that her thyroid was VERY low.  The nurse and then the Intensivist both called us to say how happy they were to find something wrong that could be causing her to stagnate.  They immediately did one more test to check only her thyroid and then started her on medicine to bring her levels up.  Since the thyroid controls so much in our bodies, they really believe that this is making her very weak and unable to heal and get better.  Boy do we hope that this is the problem and she will start getting better once her thyroid is regulated.

When we arrived this morning they said that she was doing a little better, but it would take a couple of days to see much change.  They have increased her ventilator settings and they are going to let her rest as much as possible the next couple of days.  I told them that my mother's intuition was telling me that she needed to be left alone so she could rest and to give her a little time.  I am happy that they are planning that course of action at this point.  They started her on her special formula through her feeding tube again, a whole whopping 1 cc per hour.  For reference, there are 30 cc's in one ounce so she is getting about a drop every hour.  She did well with that and they increased it to 2 cc's at noon.  If her gut can tolerate the food, which we really pray it will, they will go up by 1 cc every 12 hours.  Not much, but I guess they take it VERY slow to be cautious.

A sweet family we've met in the PICU has a daughter, Cora who is having her third open heart surgery tomorrow morning.  She is 4 months old.  She has only one working ventricle and her only usable valve is deformed and very leaky.  Please remember Cora in your prayers as well because if this surgery does not work, she will be on the transplant list.

We are truly grateful for all of you and your love and prayers for us.  Eden needs every prayer se can have and we know that they are making miracles, no matter how small they are, possible.  Thank you and we love you all! 

We Need a Miracle

Well, good news has been a little tough to come by for us lately.  Leaving the hospital yesterday afternoon, we were so discouraged and worried.  Our little Eden is just not getting better and the doctors told us flat out yesterday that they are starting to worry about her.  Up until now, they have had issues arise that are fixable and that is encouraging.  Well, she is running out of fixable issues and they really don't know what to do for her right now.  She isn't stagnant in her progress.  The good news is that she isn't getting worse, but she is not getting and better either and over time in the PICU environment that could mean she could start to worsen.

Her lungs are not doing well at all right now.  Her chest x-rays look very hazy and cloudy which means that her lungs are quite "wet".  Our lungs should be dry so that we can fully expand them and take deep enough breaths.  Hers are too wet and therefore she is breathing very fast and not getting big enough breaths to supply her body.  They have had to turn up her ventilator settings to help her.  Her lung issues could be due to a couple of things.  It could be pneumonia starting, which they have sent a swab in and nothing so far.  Or it could mean that her heart is pumping too much blood to her lungs and therefore not enough to her extremities.  The cardiac cath did not show this, but it's an option.  They are going to begin tube feeding her tonight or tomorrow morning and if her gut can handle to food, that is a good indication that she is getting adequate blood flow to the body.  If it's a blood flow issue they would probably have to open her back up and readjust her pulmonary artery band and that would mean another major heart surgery.  The final option is that she just needs more time to recover from all of the insults that her little body has undergone in such a short period of time.  I am hoping for this option!

It is so hard to say that this is completely in the Lord's hands.   As a mother the worst feeling is helplessness and that is what I feel.  However, I do know that the Lord has a plan for little Eden and I know that He is with her while she is in the hospital.  She is definitely an inspiration for me to be strong and deal with this challenge.  We really need a little (or big) miracle right now for our little baby.  Please keep her in your prayers that things will turn around and she will respond to the services they are giving her.

We are so blessed in our lives to have all of your support.  Thank you!

By the way, I LOVE these pictures.  We couldn't resist snapping these photos of her darling little hand.  The fancy one is Marcus fiddling around on our iPhoto program.  I think I will enlarge and frame that one! 

Dr. K

As a child my grandpa (Pops) always called me Dr. K as a nickname.  Little did we know how appropriate it would be at the time.  I feel as if I could get an honorary M.D. degree or if nothing else at least my RN license with all I am learning.

As for Eden, I think we are just getting better.  For the moment it seems that she has all of the infection and "issues" behind her.  Her face is still a bit puffy from her last procedure, but it should get back to normal soon.  She is gradually coming off of all her blood pressure medicines, which is a plus.  They are also weaning her little by little from the ventilator.

As of today, they will not thinking of take her breathing tube out for a couple more days.  They really want to give her a few more days just to get healthier and as strong as possible.  Once they want to get her off, they will do something called "sprints" with her in preparation.  This is when they will essentially turn off the ventilator for a period of time and make her breath on her own.  Then they will turn it back on and give her a rest and repeat it.  This way turning it off altogether won't be such a shock and it will also keep her little lung and diaphragm muscles from getting to weak.

All in all she is doing pretty well and that means that mommy is doing well also.  We sure do love our little Eden and know that she is worth every penny (and there will be millions!).  You all are so amazing in your faithful love, support and concern for us.  Thank you all for your prayers.  We feel them and they sustain us through our days.

It's TIme to Get Better

I am sorry if my post last night was a bit discouraging and depressing.  This is such an emotionally draining ride and it has been a tough week for me.  Sometimes, I just get caught up in all the little things about her progression when I should look more at the big picture.  My little sweetheart was put under anesthesia again today for her cardiac cath procedure and once again she took it like a champ.  At this point we can say without a doubt that she has been anesthetized more than the rest of the family combined and she's only 4 weeks old!  They said that her heart function looked exactly like it is supposed to at this point and she was getting adequate cardiac output to her lungs and body.  They were pleased in fact with her heart.

Basically, she has head every test and procedure done to try and put the puzzle together as to why she is stuck in a healing "rut".  She scores wonderful marks on all the tests so long story short, she just has to heal.  A small part of us wanted them to find something wrong to tell us why she's not progressing much, but we as SO THANKFUL that she does not have anything wrong that could cause more problems.  Her doctors did say that maybe with her Down Syndrome, she is just more relaxed and takes her time to heal.

Hopefully, she will be able to start eating again through her feeding tube and they are going to try to take her breathing tube out tomorrow or Saturday.

I am on Marcus's computer tonight and found these pictures of Eden.  You can see that she comes with "strings attached."  The round device on her chest was the wound vac she had for her infection area.  I saw the site now after the plastic surgeon fixed it up and I must say that it looks fabulous.

We love you all and thank God every day for your love and concern.

Discouraged

Marcus and I were so discouraged today when we arrived at the hospital.  Eden just seems to us like she is not making any progress to get better.  It's really hard to get to the hospital day in and day out and have them say to us that she is the same.  On the bright side, she is not getting worse at this point.  I don't want to sound completely negative.  Eden did get her remaining two chest tubes out today.  They are still trying to wean her off of her two blood pressure medicines (Dopamine and Milrinone).  She was off of both of them before the infection so we hope it happens soon.  Her white count is still about 22, but nothing is growing in her cultures so it might be a stress response.  Not like she's been under any stress lately?!?  Dr. Pearl, her surgeon, came in and it was so nice to talk with him.  He told us that she was making progress, it was just very little at a time.  He also said that maybe it's just who she is to have a lower blood pressure and maybe they are making more of everything than they need.  She also had a CT scan today to see if her brain function had been compromised.  Thankfully, the scan came back perfect.  She will go in tomorrow morning for a cardio catheter which will be inserted through her groin and map her heart function completely.  They think her heart is performing fine, but they keep doing tests just to make sure they have not missed anything.  Her Intensivist commented that as she gets more complicated in her little issues, it gets more complicated for them to treat her.  It really is a puzzle.  After talking with Dr. Pearl, Marcus and I were so happy and felt very comforted that it wasn't as discouraging as we though.  It's just so hard remembering that it's a long road to recovery.

We love our little Eden so much and want her so badly to get healthy so we can bring her home and love on her and spoil her.  I think she deserves it.  We really feel blessed to have so many wonderful friends and family concerned about us and praying for us.  The Lord has been very good to us and we feel so blessed to have qualified professional to care for Eden.  We are definitely modern medicine fans! 

Picture Time

I will not say much, just enjoy the photos.  Eden was making positive progress according to her doctors and nurses so we can not complain.  They are going to try and get her off the ventilator on Thursday or Friday so please pray that she will be strong enough to breath on her own again.  That would be such a big jump forward.  They have also removed her catheter and one of her chest tubes.  Slowly but surely I am reminded every day.  Her white blood cell count is up again to 20 and they are not sure why at this point because all of her cultures are coming back negative for any infection.  I pray so hard that it is not the infection rearing it's nasty head again.  Please keep Eden in your thoughts and prayers and thank you for all of your love and support. 

She comes with a lot of "bling" as her nurse terms it.

How sweet are my Eden's little feet.

What a setup.

The Wall of Fame.  As you can see Ainsley has been busy providing the artwork for Eden's wall.

Trying to rest.  Her face is still puffy.

No more mattresses on the floor, the beds are here.

The girls room is almost complete with dressers and all!