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!