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