Recovering Yet Again

I am very happy and relieved to say that Eden do fabulously in surgery again and she is recovering.  Her surgeons were very happy that there was no infection left in the skin, or anywhere on the incision for that matter, and nothing had spread to the bone.  Because of this, they were able to make the muscle transfers and get her back to us.  It only took a little over an hour and they had quoted us 2 hours so it must have went nicely.  Her anesthesiologist said that she did great with the drugs.  She is a trooper!  At this point, it is back to recovering and hopefully she will not have any more hurdles to get past.  I have told her that for her mommy's sanity, we need some smooth sailing for a bit!

I will sleep much better tonight in hopes that the worst is behind.  I appreciate all of you so much.  I just can't express it enough in words.  Thank you all for your kindness, thoughts and prayers.  Our little Eden needs them and I know that they make all of these little miracles possible.

Back to the OR, Take Four!

I will begin by saying that Eden looked pretty good yesterday when we visited.  The swelling has gone down a little more in her face and they took one of her three chest tubes out.  She was very uncomfortable and agitated looking though and that was so hard for me and Marcus to see.  She would cry and cry, with no sound coming out because of the ventilator.  No one likes to see that heir baby is crying and not be able to hold or console them in any way.

She has gone back to the OR today, she is in there right now as I type, and they are going to close her up.  I spoke with the Plastic Surgeon before the procedure and wasn't aware until that moment that this is quite a large surgery.  They will be taking muscle from her pectoral (chest) muscle and attaching it to tissue at the base of her sternum (breast bone).  Since they had to scrape away skin and tissue at the infection site, she does not have enough to close up.  They will use muscle because it is the body's best substance for healing and it is the best defense or barrier between the bone and skin to fight off infection.  However, if they get in there and realize that the infection is not completely cleared up, they will postpone the surgery.  I REALLY hope this does not happen.

Having her head off to the OR once again has been very difficult for me today.  I can't tell you what it does to a mother's heart to see her newborn baby wheeled off yet again to have a major surgery.  I pray that her tiny body is strong enough to endure.

I will keep you updated when she comes out.  Thank you for your love and prayers!

Step By Step

Eden is one tough little baby.  I am so amazed by her determination to fight through all of this and get better.  The sweetest part is that when she is awake, she just looks around very happy and content.  I very rarely see her act as if she is uncomfortable or upset.  I am already convinced that she is a better person than me because I would be moaning and groaning all the time.

Her surgery went well to clean out the infection site and thankfully it was not in the bone.  She now has a suction machine ever the incision area called a Wound VAC.  This serves to drain the fluid from the site and help in the healing process.  Her doctor's plan is to take her back into surgery on Monday with the plastic surgeon to close up the incision and make sure the infection is out.

She continues to respond to the antibiotics for her sepsis.  Her white blood cell count is now down to 14 and her platelets are up in the 130's.  They did give her extra blood today though just to prepare her for Mondays surgery.  Her blood pressure has been a little low, but they think it's because of being low in blood.

During surgery on Thursday, they placed another IV line in her femoral artery (in the groin) and that got a clot in it.  They immediately took it out and started her on a drug called heparin, which breaks up clots.  Her little foot is not as cold now and the pulses have returned so they are confident the clog is gone.  They were doing another ultrasound when I left today to make sure.  She is swollen again, but peeing it off much quicker than the first time.

Today was a good day.  Eden is stable and making progress in the positive direction.  Mind you, her progress is very little by little, but I'll take it!

I know we say this all the time, but thank you again for your love, support and prayers.  I know my strength and comfort comes from you all.  I am so blessed and lucky to have the support that you all give.

On a lighter note, I was sent a newborn packet from our local Down Syndrome support group and although I don't do bumper stickers, I just might have to put this one on the car.  It says: "My child has more chromosomes than your child!"

We love you all.

Back to the OR

First and foremost, please keep Eden in your thoughts and prayers as she is a very sick little baby right now and using all of her strength to get through this.

It was another emotionally draining day with her going back into the OR.  Dr. Pearl took her back to clean out her incision site where the infection started and cut away any dead tissue.  While in there he also checked her sternum to make sure the infection was not in the bone.  Thankfully, it wasn't.  At that point he had a plastic surgeon look at her muscle flaps to see how they will close her up.  Her skin is once again open and they plan on taking her back into the OR in a few days with the plastic surgeon to close her up.  They will use muscle flaps under her skin in place of the skin and tissue they had to scrape away.

She has been stable all day for the most part.  They have put a catheter back in and now she has blood in her urine as well.  This is probably due to her low platelet count.  Her platelets should be around 200 and they are at about 89 right now.  If they get near the 20's they will do a transfusion.  Her little body just doesn't have the time to replace all the blood that is being lost.

Another good thing is that her white blood count is down.  Your white blood cells go up when you have an infection.  The normal range is 5-10 in babies her size and last night hers was at 26.  On her last blood draw, they were at 18 so that means she is responding to the antibiotics.  They are still concerned about the gut issue and are hoping that surgical intervention will not be needed.  I pray that she responds to the medicine and no food in the tummy route rather than another surgery.  Again, the doctors are pretty confident that all of these problems trace back to the infection.  

I know that she is getting the best care possible for her and they are doing everything imaginable to get her better.  It is so hard to admit that I don't have any control over the situation, but I have to turn it over to the Lord.  I am so thankful that I don't have to do this by myself and I have family, friends and even those I've never met praying for Eden and my family.  It is amazing how amid all of the stress and chaos of the situation, when I ask the Lord to help me I get a peaceful feeling that all is well.

It's been a long day so I'm going to bed for some much needed sleep!

Thank you all.  We love you.

What Next?

What a day little Eden had yesterday.  The good news is that we are still here.  I can't help but make a little light of the situation because we have been hit with so many complications that it is just unreal.

I arrived yesterday to a slew of new information.  On the positive side, her chest tubes are draining less and they think the fluid around her lungs is clearing up.  Also, she is still urinating well, which is a good sign that her kidneys are doing well.

As for the complications, they found blood in her stools yesterday morning, which can mean that she has developed something called NEC (Necrotizing Enterocolitis).  This is an infection of the gut due to decreased blood flow to that area thus causing certain parts to die.  After a ton of tests, they do not see any signs of NEC, but they are going to treat it as such.  The treatment includes no food into the stomach for at least 7 days and antibiotics so it can heal.

Her blood pressure was also dropping quite a bit, so they gave her a steroid shot and another medication (Dopamine) to help.  They have also had to give her albumin to keep her blood levels up and she even had one transfusion yesterday.

The real kicker is that she now has sepsis, which is a systemic infection that began in her incision and has now traveled throughout her body.  She is on two VERY strong antibiotics for the infection and we just pray that she responds well to all the intervention.

Her nurse yesterday said that these are all possible complications from open heart surgery, but they never see them all in one little baby.  Just like my Eden trying to be different!  By last night she was a very sick little girl so we asked the doctor flat out what is normally the outcome with babies this ill.  His response was that they pull through and they are tougher than any adult would be in getting better.  I was at my wits end by then and just had to have a good cry.  She has lost a little weight and I am sure she is just weak and tired from all she's been through.  I know she is such a fighter and very strong and she will need all the strength she has in the next couple of days.

Last night, Marcus,a very dear friend of ours and I went down to see her.  Marcus and Lane gave her a blessing and we spent some time with her.  Amid all of this, she was awake and looking around not acting upset in any way.  I wish I could handle my problems as well as she does.  I don't let myself think anything but the positive and that she will get better.  Again, thank you all for your love, prayers and support.  I believe she is blessed because of your faith and prayers.

 

The Phone Call

I will start by saying that the lat two days were wonderful for the most part.  I was able to hold Eden again on Monday and Tuesday and I can't explain how wonderful it was just to sit with her and rock her and look at her.  If I knew then what would transpire, I would have held her longer and relished in it even more.

She had to have another central line put in on Monday and they had to put her under again to find a suitable vein.  A central line is a like an IV, but it goes in through a vein and ends up right next to the heart.  They put hers in through her right jugular (in the neck) and it can stay in very long term if they need.  They plan to use it for drawing blood and to give her medication.  I was so nervous for the procedure because they had to intubate her again (put in her breathing tube).  She did fine though and came back without the tube so I was relieved.

She continues to have some drainage from around her lungs so her chest tubes are still in to suction her.  She seems to be having less drainage and hopefully it is due to things healing inside her body, but it is also a possibility that her tubes are clogged so they will use something to clear them and go from there.  Before I left yesterday they took another chest x-ray and they think she is just healing!  Very good news.  

She also has a little infection in her incision so Dr. Pearl had to remove some sutures, drain the site and then pack it with some medicine stuff.  They increased her antibiotics as well so we are hoping that she does not get a more serious infection.

We went to bed last night very happy with the last few days and feeling like maybe she was really on a good path.  Those thoughts ended when the phone rang at 11:30 pm.  Who else calls that late except the hospital and it's never good news.  Anyway, they told us that last night she started struggling to breath again and after trying a number of things, they had to intubate her again.  She is back to having a breathing tube and that means she is back to being sedated and no one can hold her.  The worst part is that they don't know what caused her to have difficulties. 

Needless to say, that was a crushing blow to me and Marcus.  The roller coaster must have gone down a little hill.  I am trying to think of the good days we had and remember that the end result of getting her healthy is most important.  I feel like this is going to kill me though along the way.  It is so hard to deal with all the ups and downs and my heart aches for her that she has to endure all of this.  I know there is a reason for all of this and I have so much to learn from it, but I hate that it is a lesson for me (and other adults) at her expense.  It's these moments that I just struggle with the "whys" of everything.

I do know though that me and my family receive so much strength and faith from all of you.  Thank you again for loving and supporting and praying for us.  Little Eden is so much stronger than her mommy and I am so proud of her for fighting through.  I love to be close to her because I can feel a very special, strong spirit in her room and I am sure that angels are with her.  Please continue to pray for her and know that we appreciate you all more than words can express.

Today will be a good day!

Photo Gallery

Eden's little face is finally back to it's pre-op size.

She is so content just checking out her surroundings.

The most alert Eden has been since before her surgery.

Eden and mommy are having a little chat session and mommy is LOVING it!

Mommy keeps forcing the binky in hopes of keeping her suck strong so she can take to eating.

Is that Mommy kissing me?

Eating up the kisses from Daddy

An Easter Dream Come True!

I had the absolute BEST Easter gift today.  I was able to hold Eden for the first time in two weeks!  I can't express to you all how good it was for my heart, mind and sanity to finally hold her in my arms again and be so close to her.  I can honestly say that I have never enjoyed holding a baby more than I did this afternoon.  Just to feel her warm little body wiggle and squirm was fabulous.  I kissed her forehead with reckless abandon all afternoon.

She continues to do well and she is looking so darn cute!  The drainage she is getting into her chest tubes is the fat that her body can not process right now and it is very thick.  This has caused her tubes to clog up a couple of times so we are hoping this will correct itself as well.  There is absolutely no way she will get the tubes out if they keep clogging because then they are not draining properly and the fat backs up in her body and puts her in a little distress.

They also tried yesterday, with no luck, to place a central line again in her veins.  They want this so that they can draw blood from it instead of having to poke her each time.  With all of her little issues, she has to have at least one blood draw a day and it's not painful at all if they can do it from a central line.  I think they were going to try again tonight and I sure hope they get it and don't have to take her to surgery to place it.  She must have veins like her mommy that are very stingy!

We still have some little hurdles to overcome, but she is doing so much better and for that we are extremely grateful.  Thank you all for continuing to remember little Eden in your prayers.  We know they are working for her benefit and I am so thankful for all of you and your faith and support.

I am sorry I haven't posted new pictures yet, but the battery just died in the camera so I am charging and will put them on tomorrow!  Trust me, they are worth the wait.

Thank you all for everything.

Extabation Complete!

The roller coaster ride continues, but now we are really on our way up.  Let's hope it's a really high roller coaster so the up lasts a while.

You all know of the issues with her breathing tube and trying to get her off of it.  Well, after our horrible day on Thursday she made a complete about face.  They figured out what caused her to code and now that they are dealing with that issue, she is doing so well.  They extabated her yesterday (Friday) mid-morning and she has handled it so well.  She does have those little prongs in her nose giving her a tiny bit of supplemental oxygen, but that is no big deal as far as mommy is concerned.  She loves to play with her tongue again and we are working on getting her to suck her binky that she loved so much before surgery.

Here is what they discovered after her horrible "episode" on Thursday.  First, they found out that her thyroid is low.  This could be because she just had surgery and the thyroid tends to be low after surgery or it could be due to her Down Syndrome since low thyroid is common for these kids.  Either way, she is on a little medicine for it and we should know in a few weeks if the surgery or Down syndrome caused it.

Also, they found out that she developed something called chylothorax from her surgery.  Here is a great site that explains it in depth:  http://intermountainhealthcare.org/xp/public/documents/pcmc/chylothorax.pdf 

In a nutshell, we have a number of lymphatic vessels surrounding our heart, which are responsible for processing and distributing fats throughout the body.  Sometimes, during heart surgery these vessels are damaged and this happened to Eden.  This means that her little body can not process the fats from the breast milk she was getting.  Therefore, these fats were accumulating as fluid around her lungs and this caused her difficulty breathing and ultimately caused her heart issue.  This is why they put new chest tubes in to drain this fat/fluid.  The sad news is that she can't have my milk right now and she is on a special formula called Vivonnex.  The great news is that this is not permanent and her lymphatic vessels will heal themselves in 8-9 weeks and she can then start drinking my milk again.

We just left from seeing her today (Saturday) and she looked the best she has since before the surgery.  She is absolutely beautiful, if I do say so myself.  She was so awake and alert this afternoon and loved looking at me and Marcus.  We gave her a good share of kisses and she seemed to eat them up.  It was so good for my heart to see her look like my little Eden again and to actually be awake and alert.  She is breathing wonderfully and seems to feel great now that all of her issues are worked out.  The funny thing is that she looks so tiny now and she weighs almost a pound more than at birth.  It must be because she was so swollen for so long.

It was such a fabulous day for us all.  I am so grateful for the power of prayer and for the faith and love of all of you.  Please know that we feel your prayers and we know that angels are watching over our little girl and she has been blessed.

I will post pictures in the morning!

The Scariest Day of My Life!

What a day we had today.  I will preface this post by saying that this was one of the scariest days of my life and I may not sound as happy as some would like in this post.  I am sorry, but it was very tough.  Anyway, I am so glad that today is almost over and that tomorrow is a new beginning because hopefully it will only improve.

When I arrived at the hospital this morning, everything was going well.  They did get her breast milk quantity high enough that she is off the TPN (IV nutrition) and only getting my milk.  That made me very pleased to say the least.  They even said that I need to bring in more milk as they are low.  Since my entire freezer is almost full of it, I am glad to oblige.  They also took the RA line (right atrium line) out of her heart.  It was monitoring and giving her meds right to her heart so it is good to get it out.  Also, since they are trying to get her breathing tube out again, they decreased the amount of oxygen in her tube.  We really thought we were making progress the first part of the morning.

Then around noon, the Respiratory Therapist was in the room giving her a treatment and all of the sudden her heart stopped (she coded), her blood pressure dropped drastically and buzzers went off and everyone ran into the room.  It happened so fast I didn't know what it was at first, but I knew it wasn't good.  They gave her chest compressions for a few seconds to get her going again and they had to immediately increase her oxygen and give her some meds for her heart.  It only lasted for about 30 seconds total, but it was enough to make me have a panic attack.  For a long time after, they could not figure out why it happened.  Tons of tests were done looking at every possible scenario.  They finally found fluid trapped in her chest cavity that they believe was causing too much pressure in her lungs and on her heart so it stopped.  She now has two more chest tubes in to drain the fluid and she was almost back to herself by the time we left.

Just to make a tense and difficult day worse, a couple of hours after her episode the little baby girl in the room next to her completely coded and they were still working on her when we left.  It was so bad that doctors were running from everywhere to assist and they locked us in our room until she was taken away.  That was a little too close to home for me not to get emotional.

This has been one of the hardest things I have been through and I was so ready to get off the "roller coaster" today.  I do know though that all of your prayers are what get me through the day and help me to cope.  I know we have experienced miracles with little Eden and I know that there will be more in the future.  As difficult as it is at times, I can't let my faith weaken.  I thank you all for your love and support and I ask that you continue to pray for our beautiful, strong little baby.

By the way, I hope you enjoy the photos.  I couldn't get as close up as I wanted because of her position, but she looks cozy.  I also wanted to show you how nicely her incision is healing and how much thinner she looks without the swelling.

More Milk Please!

Well, I will be very honest that I was discouraged by the seeming lack of progress yesterday and I was just plain overwhelmed with the huge roller coaster of emotions that this adventure brings.  Most of the time I feel like I am doing well enough at handling it all, but last night and this morning it was tough and I felt as if I was barely hanging on.  Each day that goes by, my heart aches more and more to hold her and love on her again.  I know that day will be here very soon, but in my fast paced world not soon enough.  Again, another lesson in patience and faith in the Lord's time.  Boy am I learning a slew of life lessons through this experience!

Little Eden looked very beautiful this morning when I got there.  She was swaddled like a newborn should be and they had her lying on her side.  Nothing big I know, but I have only seen her all sprawled out for a week so it was nice to see her cozy and warm.  She still has her breathing tube.  They are decreasing the oxygen levels running through it and I think they will try to remove it again on Friday.  

The  very best news of the day is that she is almost completely on mommy's milk through her feeding tube.  Right now she is getting 8 cc's an hour and they increase it by 2 cc's every six hours.  Once she gets to 15 cc's an hour they will take her off of the IV nutrition and she will only have my milk.  It should happen tomorrow and then it's one less tube in her little body. 

I am so thankful for all of you and your continuous prayers on our behalf.  We need them and we feel them working.  Thank you!

First Time, Not a Charm

I will try not to complain because we have had two very good days with Eden, but I was a little down leaving the hospital today.  They tried to extabate, remove her breathing tube, this morning and she just did not do well breathing on her own.  They worked with her for about 45 minutes to see if she would get over her breathing difficulties, but so didn't so they put the tube back in.  They will leave it in for at least one day and then try again.  Although this is quite common and nothing to be very worried about, it was a little let down as I wanted it out so we could be that much closer to holding her.  I continue to be reminded that I need to be patient.

On a positive note, she is off most of her medicines and they took her little catheter out last night so she is peeing and pooping in her diaper.  I have never been more excited to change a diaper as I was today.

Thank you all for your continued support and prayers.  Please keep praying for little Eden and her recovery.  We feel each of your prayers and they really do work.  Thank you!

Inseparable Sisters

Since Eden has been hogging the spotlight as of late, I though I would share a little about Ainsley and Emerson.  Up until last Tuesday, they did not sleep in the same room.  Emerson was still in the crib in the babies room and Ainsley was in her room on a mattress on the floor.  We has two twin mattresses in her room and are waiting for the bunk beds we ordered to arrive.  Anyway, last Tuesday, we let Emmy sleep on one of the twin beds for the first time.  To see the look on her face was like she had achieved a "right of passage" so to speak and we knew there was no turning back now.  Now, when we put them to bed we hear chatter and giggling and they are both up at the crack of dawn.  I love to listen to them from the hallway because it reminds me of sharing a room with my sister and what good memories I have of our late night chats.

The two pictures that follow are of the girls.  You will see in the first that they used to sleep in separate beds.  However, on Sunday night we found them in the same bed sound asleep.  When I asked Ainsley about it this morning she said that their stuffed animals needed a bed of their own!

Boy do we love our girls and we feel so blessed!

Two for One

Today was another wonderful day with Eden and her progress.  She was less swollen than yesterday and she is beginning to look like her little old self again instead of a linebacker baby.  Her doctor continues to drop her medicine doses down and slowly she is being weaned off of all of her different meds.  She was awake and alert for over an hour this morning and I just loved talking with her.  It was so nice to actually have her follow me with her eyes and feel like she really knew I was there with her.  She still has a good amount of pain medicine running through her little body so she is groggy, but she was awake and smacking her lips and mommy thought she looked beautiful!

Her doctor said that they would take her breathing tube out tomorrow and that is great news because then she can start bottle and eventually breast feeding.  I know she will be so happy to get to eat again since she was doing it for her first three days.  She also really took to her binky so she will be glad to have that back.

Now, for the very best news of the day...this may sound strange to you, but it really is good news.  When I got there this morning I realized that Eden did not have her nurse Chris all to her self.  Eden has now graduated to sharing a nurse with another patient.  That means that she is getting better and does not need as much constant care!  Just to see that made my day.

Like Marcus and I always say, we would like to thank all of you for your thoughts and prayers.  We feel them constantly and this has been such a spiritual experience for us both.  We have felt the love of the Lord stronger in our lives since Eden's birth than we have in a very long time.  I know it has a lot to do with all of you and you faith and prayers.  Thank you so much for loving our family.

Progress

First off, we are sorry for the delay in our posts.  I know many of you depend on this blog to know what is going on and to get the progress of Eden.  For most of you it's the only way you can find out what is going on and also know that everything is going okay so we will try harder to keep everyone up to date.

FRIDAY:

Friday was NOT a good day.  We had high hopes for a good day for it was the day to close her chest...  They closed her chest Friday afternoon and sewed her back up and we were so excited to be making progress.  Well, Eden must not have appreciated the progress (she must like it here in the PICU) because she didn't respond well.  Her blood pressure crashed, her O2 levels dropped and she stopped peeing.  Not good.  We, along with the medical staff, were very worried about Emerson all day Friday and couldn't believe she wasn't doing better.  Late Friday night she finally decided to get on board our plan for her and her blood pressure and oxygen levels went up.  She still didn't want to pee so they gave her some steroids to help her (is this the excuse Barry Bonds used?).

Here is a picture of her with her chest closed.

You will see the nice incision down the middle of her chest.  She still has in her chest tubes and between the two chest tubes you see 4 lines for medicine to go directly to the heart.  She still is rather swollen and heavily sedated in this picture.  

SATURDAY:

Today was a great day!  We came in the morning after a very stressful Friday and sleepless night to find Eden fully cooperating!  She urinated more than she took in and her circulation was good again. While we were at the hospital the doctors came in and were so happy with her progress and lack of drainage from her chest tubes that they decided to pull out the chest tubes.

Here is a picture of her with one out and one in.

Here is a picture of her after all the little procedures.

SUNDAY:

Eden is doing so great.  They have an NG tube (a feeding tube down her nose) in her now.  She is getting 2 cc of breast milk every hour.   If you look closely you can see the little line coming out of her nose. Not a lot of food, yet, but a HUGE step forward for her and us!

Eden is starting to wake up now and look around.  It's amazing to see her start to track mommy an daddy with her eyes.  They are starting to lower her medicines.  They took her off her epinephrine which helped her heart beat, so now she is beating on her own with no help.  They are also lowering her phentinol which is a pain medicine.  One of the nurses said, "it's like 100 times more powerful than morphine."  So as they slowly decrease the medicines and she becomes less dependent upon them we will be able to get her off the machine that breathes for her.  This will be a great mile stone for Eden when her breathing tube is removed.  At that point we can start to hold her a little and feed her.  Remember:  This week (Wed.) was our goal for this.  Keep your fingers crossed and we'll keep praying for Wednesday.

Again, Keisa and I want to thank everyone for their thoughts and prayers.  We really feel your love and are strengthened by your concern and interest.  We can't close today's post without letting everyone also know what a blessing we feel this has been for our family.  We feel closer to each other, all of you and the Lord.  We see a little more clearly now and our testimony of our Savior's love, grace and atonement seems a little more tangible.  We love you all so much and thank you for everything you do.

Perspective

Another day has come and gone (almost anyway) and we continue to be amazed by the outpouring of love and kindness to our family.  Thank you for your constant prayers and thoughts for Eden.  She needs them and I know that they make a difference.  I actually had a nurse tell me yesterday that babies that are prayed for recovery better than babies that are not.  The power of prayer really is amazing, isn't it?!?

Eden continues to make progress, however slow it is.  Marcus and I have learned that the recovery process is just that, a process and more than anything, it takes TIME.  We were so anxious for the surgery and now that it's over we want her better right away, forgetting that it doesn't happen ever night.  Yet another lesson for me in patience and trust in the Lord and his timing for everything.

She did try to open her eyes a little today, although she is still very sedated.  It made me miss her cute little face and how it felt to hold.  At least we had 9 days to hold and love on her before the surgery and it helps to know that we will have many more soon to come.  She is still a little puffy, but she is urinating very well now so the puffiness should be gone soon.  They still think they will close her sternum and sew the skin up tomorrow or Saturday.  Although I can't really do anything for her right now, I still take comfort in just being there and sitting by her.  I like to think that she knows when I talk to her and she can tell that it's me kissing her little feet and cheeks.

All in all, we are so blessed and I am so grateful for modern medicine.  It has been a lifesaver more than once) in our family.  Thanks to all of you again for everything.  We could not survive this without you.

Goals

Eden is doing so well.  She is making great progress every hour now.  I went in today and she had a total of 21 different medicines and fluids going into her little body.  I'm just waiting for the day that the number is zero!  Anyway, the nitrous is gradually being reduced.  She went from 20 to 2 and she will probably be off this by late tonight.  Her urine output is still great. We are trying to have her pee more than she takes in so her swelling goes down.  They still have her on morphine for the pain because they want her to get a lot of rest, but that in time will be reduced as well.  Blood Pressure looks great, oxygen levels look great, her little body is warm (for a while there she was so cold - it was scary)... she's still pretty swollen but this will go down over time.  

If everything goes well she will have her chest closed and sewn up on Friday.  It's still open and we can't wait for it to be closed.  With her ribs spread and just her skin over the big space, you can actually see every beat of the heart thru her thin little skin, not the prettiest sight to see on your baby.  After this, it will be just a matter of days that her chest tubes will come out and she will get off the ventilator. They don't like kids to be on the ventilator too long because they can get lazy and forget how to breath on their own; however, because Eden was never dependent on it during her first week of life she stands a better chance of getting off it with fewer problems.  

You know us, we love goals.  So the goal is to have her off the ventilator and no chest tubes by this time next week.  I think that's a pretty conservative goal, what do you think Eden?  

Again, Keisa and I thank you for you love, concern, dinners, prayers, thoughts, blog posts and everything else.  We can't tell you what means to us and how much strength we feel from your prayers.  We know God lives and we are his children, that He is concerned for us and knows what we are going thru and that He loves us and wants to help us; we just have to let him. Thanks for being part of this great plan!  We love you all so much.  

NO B.P, NO P.P.

The nurses have a saying, No BP (Blood Pressure), No PP (Pee Pee).  This is an important statement because with low or no blood pressure Eden will not release her urine.  This is extremely problematic because if this goes on for too long she will go into kidney failure. Plus, they give her a lot of fluids to keep her hydrated and her heart pumping and since she hasn't been releasing any urine she is VERY swollen.  This causes other problems that cause other problems, etc.  Since Monday there has really been no urine output.  Every time the nurses empty her little bag there is only about 5 cc's and this has really worried us.

YES BP, YES PP

Well, this morning the nurses went to empty her little bag and there was, DRUM ROLL PLEASE........ 25 cc's!!!!  This was a huge victory for us.  Eden's blood pressure has gone up and now she is peeing.  We are trending positive (doctor language)!!!  Never thought we'd be so grateful for pee pee.  Small little victories.

Thanks for all your prayers.  We really can feel them and are so grateful for everyone's love.

Take 2 & Call Me In The Morning!

Not much to report on, which is a VERY good thing.  We just monitored Eden all day and although there hasn't been huge improvement, she is trending upward.  The doctors and nurses feel that she's not doing anything out of the ordinary for a little girl just coming out of open heart surgery.  So we feel good about things.  We just have to take it one day at a time and accept God's will and rejoice in our little victories along the way.

Here is a picture of all her medicines being "pushed" into her little body.  Yes, you are counting correctly, 13 different medicines not including fluids (look at the three syringes to the very right of the picture).  You know what's really strange, Keisa and I actually find this picture pretty comical. 

We know some of the medical staff who are taking care of our Eden read this blog so we want to thank them for their talents, going to school to study what they did, for working at Phoenix Childrens and most importantly giving Eden their love.  It's one thing to take care of her, it's another thing to care for her.  Thank you, we are forever in your debt.

One last thing:  Please keep Bela Grace Milne and her mommy and daddy (Avery and Tanner) in your thoughts and prayers.  Bela is a fighter and recovering from her surgery as well.  Here is their blog  http://www.tanadave.blogspot.com  

 

A New Day

This morning started very early and with some excitement (I've realized at this point in the game I don't really like excitement).  Eden was being very stubborn and just wouldn't get her blood pressure up, so Dr. Pearl (her surgeon) decided to open Eden back up and make some adjustments to the Pulmonary Artery band in hopes that her cardiac output would increase - the pulmonary band restricts blood flow into the lungs.  He actually replaced the band, but it made little impact.  Dr. Pearl isn't too concerned because some children just take longer than others, he just felt it was better to be safe than sorry.  So we just have to wait and see and let Eden get better at her own pace and on her own terms.

It's a very hard thing to juxtapose your life when a crisis happens.  We have really noticed the impact of Eden's health in our two other girls.  They really do know something isn't right with mommy and daddy and home.  Because we are torn between two places right now the normal structure of our lives isn't the same and they are very affected by it all.  Our heart breaks to see them suffering.  The hardest part of this ordeal isn't that we are going thru this, but that those around us who are not directly involved are directly affected.  

Reading everyone's comments on the blog has given me so much strength.  I am filled with gratitude for everyone's love and concern.  I've realized that being a true Christian is voluntarily experiencing other people's trials and hardships with them, much like our Savior did for us.  We really appreciate everyone's involvement in our lives and the support you give us thru your love and just "being there" for us.  

We really believe that the Lord has a plan and we have the opportunity to feel closer to Him than ever before in our lives.  Little Eden is going to keep fighting and we will take each new day we have with her as a blessing.  Isn't life great today?!!!

Keep the Faith

It's been a very long night.  Eden is such a fighter.  I have been singing primary songs and whispering in her ear my life story, I really think she likes it and responds well to it.  Right now she is just tired and is having a difficult time getting her blood pressure up.  When we first came into the recovery room this afternoon, a nurse said you know there is stress when there is more than one doctor and one nurse.  Well, right now there are three doctors, two nurses, an echo tech and a respiratory therapist.  One of the doctors was paged and I heard her saying that she couldn't leave Eden unless the other child was "sicker than this one."  Her cardiologist and CT surgeon keep talking through different scenarios.  It's been interesting to hear them discuss all the options and possible outcomes.  Definitely NOT like ER on TV where they have quick automatic answers.  It's actually been very comforting to see them working together to figure things out.  They are going to try one last option of giving her some nitrous to stimulate cardiac output so Eden's blood pressure will rise.  If this doesn't work they will open her back up (right here in the room) and loosen the band on the pulmonary artery so there is less resistance to the lungs thus allowing for greater cardiac output and a higher BP.  Although this all sounds super bad, I am told this is part of the guessing game and care.  It a series of processes that are very fluid.  It is stressful, but I really do feel Eden is in great hands and things will work out.  

One thing I have really learned thru this entire experience is that this, like life, is a long process and you have to take one day at a time.  You have to rejoice in your little victories along the path to the overall win.  You just can't get discouraged by the little defeats in life because they are inevitable.  We just have to keep moving forward and keep the faith.

Well, I have been up since 4 am yesterday and it is now nearly 1 am the next day.  I'm going to stay up to see how this new idea/procedure works and if it doesn't, for them to loosen the band... then I'll get some much needed rest.  

Family of Five

As promised, here are a few photos of the family.  Since it is still RSV season, we were lucky to get some pictures of the entire family.  As you can see, the girls absolutely adore their little sister and they keep asking when they can see the "real" Eden, not the one in pictures.  When we told them that the doctor's fixed her heart today, they smiled from ear to ear and are already talking about her coming home.  Let's hope it goes quickly because I have a feeling they will ask for her every day.

Post Op pictures

I took a couple of pictures right after Eden got out of surgery.  These aren't the easiest pictures to look at, but we were kind of prepared for how she would look since we've been down this road before with Emerson's TE Fistula.  This being said, it's still very difficult to look at her recovery after open heart surgery.  

The doctor said the next few hours will be critical.  She will go thru a little stress about 6 hours after the surgery, but this is usual after all surgeries like this.  

Right now Eden has two chest tubes for drainage, is on the ventilator, has several lines pumping medicine directly to her heart and they have a non-evasive strip on her head which monitors O2 in the blood to the head.  Besides several different types of "lines" for various medicines, nutrients and the kitchen sink, they have a blood pressure cuff on her leg.

Right now her O2 is lower than they would like, but it is trending upward and looks normal for this stage of recovery and her blood pressure is a little low.  Again, we are told these numbers are all typical for this stage of recovery  

Again, we are so grateful for everyone's support and prayers and are so thankful our little  Eden is getting better.  Keisa will post a few pictures with the entire family shortly.  

 

MIRACLES HAPPEN!!!!

Dad here updating everyone.  Now remember, I've been up since 5 am and under just a little stress so I will try to have everything make sense! 

Right after the surgery started they came out to tell us they were not going to do the Norwood procedure because the left side of the heart and the mitral valve (they think) are functional. The surgeon fixed the anatomy of the mitral valve and put a clamp on the pulmonary artery to limit some of the blood to the lungs to help cut down on pulmonary stress.  

All this was an answer to our prayers.  This surgery isn't as evasive as the Norwood and it gets us down the road of a normal functioning 4 chambered heart.  If this surgery works we will monitor the heart and see how the mitral valve grows and functions.  If everything goes as planned we will have another surgery in about 3 - 5 months to fix the holes in her heart.  If the mitral valve is still suspect, then they will do another major surgery which is a derivation of the Norwood  called the Glenn.  In any case we are headed in the right direction.

So for now we are hoping for the best and just glad our little girl made it thru surgery.  I will post a few pictures in a little while so everyone can see her right after her open heart surgery.  

Keisa and I really appreciate all of your love and concern.  We want you to know that we firmly believe our prayers have been answered and we were able to take the road that will be best for her and allow her the greatest chance to have a healthy and properly functioning heart.   I really believe that a miracle has happened in our lives.  In the course of a few days we went from a horrible end of life scenario where the mitral valve was not functional to  now:  a mitral valve that is functional.  We have been truly blessed.  Thank you so much to everyone for everything.

A great start to a wonderful beginning

Thanks to our friends (Tanner and Avery) for all their great information on their blog we have decided to TRY to "blog." Your patience with our learning curve is greatly appreciated.  

As you know now what really prompted this was our little Eden Grace Ridgway.  She was born February, 29th 2008. She was 6 lbs 6 oz and 19 3/4 inches long.  She was so beautiful and we are so excited to have our third little girl. She was also born with a very special gift, Trisomy 21, commonly known as Down Syndrome.  We have a blonde (Ainsley), a red head (Emerson) and now a brunette (Eden). WOW, we've covered all the bases.  Now all that's left is a BOY!  

Eden is now at Phoenix Childrens Hospital in the NICU. Actually, she now is going to surgery. She has HLHS and is undergoing open heart surgery.  She will be in surgery for about 5 hours. She was scheduled for surgery at 8 am, but by the time she was taken to the O.R. it was 10:10. 

 

At the last minute they started to think they could do a less evasive surgery.  One of Eden's cardiologists sent her echos out for a second opinion to Ohio and are still waiting to hear back. So they thought they would wait for the second opinion.  However, after a new echo and after thoughtful prayer we decided to move forward  with the original plan. 

 

Last week on Thursday when we spoke with Dr. Pearl, Eden's CT Surgeon, we felt really good and had a wonderful peaceful feeling come over us.  Marcus fasted on Thursday and while the doctor was talking he had a wonderful warmth come over him that we were making the right decision and I also felt we were making the right decision.  This Sunday Marcus fasted and we both felt good.  So when this came up it was a little intense.  But we feel good about going forward with the big surgery now.  

The doctor said he would look at the mitral valve when he got in there and if it looks good he will do the coarch (sp) and the banding - won't explain unless we decide to do it... but right now we are headed forward with the Norwood procedure.

Lots of prayers and fasting for our family can be felt and we love and appreciate all of you.  We will keep you posted on the progress.  

Another note:  Eden has a little friend she knew before she came here.  They were born on the same day, have similar chromosomal issues, almost identical heart conditions and she had her surgery on Friday.  Her name is Bela Grace Milne.  Please keep her and her parents (Avery and Tanner) in your thoughts and prayers too!