The house is quiet and I am too excited to sleep.

I'm thinking about all of the things that have happened this past week and all of the people that have directly (and indirectly) played a part to bring us to where we are today.

This is Zeta on one of the scariest days of my life.  It is hard for me to look at this picture without crying - not because of the medical equipment...for most of her life she has been hooked to some type of machine(s) and I've probably honestly lost count of the times she has been intubated....or blue....or sedated for days or weeks on end....but this picture.....this picture really signifies to me all that this little girl has overcome.  I vividly remember this day.  It was not the first, but the second time that I was TERRIFIED of losing her and absolutely HELPLESS as to how to help her.  It's unnerving how specific sounds, smells, and dates stick out in your mind.....and frightening how a picture can stir up so much emotion.

I thought of this day because I realize how far we have come.  I realize how much we have to be thankful for.

This is Zeta.  Yesterday.  Not quite 2 weeks after surgery to remove a hypothalamic hamartoma from her brain.  Zeta sat unsupported (after I steadied her) for several minutes.  She has not ever sat for more than twenty seconds - and she has not sat alone at all for several months.  It was a skill that we saw briefly emerge and then totally disappear. 

This is why I thought of that day.

Because now, Chancelor can teach his baby sister how to smile for the camera.

He can fix her bow.

And I guess Steven can teach her to make funny faces!

I thought of that day because for the past 12 days I haven't seen her eyes twitching under her eyelids as she tries to sleep, and I don't see her body jerking in spasms.  Her eyes are brighter and seem more clear when she is awake, her smiles seem real - she isn't doing the funny thing that made me cringe and made other people think she was playing and laughing (the gelastic seizures).

 

I thought of that day because I hope we are NEVER in that situation again.  I wish that NO ONE ever had to face a situation like that.  I thought of that day because we've had the opportunity to experience BRIGHTER days. I thought of that day because I am grateful for all the many people who have helped us come this far.  I am thankful for those that helped me through our pregnancy and let me confide my doubts and fears.  I am thankful for the doctors that monitored Zeta constantly and made sure she arrived in this world safely.  I am thankful for the doctors, nurses, and staff at University Hospital and MCG that forever left imprints on our hearts.  I'm thankful for the doctors, nurses, and staff at MUSC who have continued to help unfold all the mysteries that Zeta beholds. and I'm thankful for her pediatrician and all the emergency workers, and medics that have helped us in the past.  I am grateful for the surgeons, doctors, and staff at PCH and what they have done for Zeta in the short amount of time we were there, and I'm thankful for Medical Flight Services and all they did to ensure we made it to and from Phoenix quickly, safely, and without extra burden.  I am most thankful for friends and family, and new friends that we have made.  I am especially thankful for my parents. I am thankful for the complete strangers that send prayers for our family.  I am thankful that our family has been used as an example to show others Christ's love and healing power.

I always kind of had the thought in the back of my mind that you have to be PERFECT to serve a PERFECT God the way that you're supposed to.  Over the past 16 months I have found that is absolutely NOT true.  We all have our hang-ups and we all do things that cause others to judge us.....but that should not stop us from striving to be what God wants us to be.  I know there are times that I can be judged to be as 'unholy' as the atheist down the street- (and of course, I don't always write about all my many, mini-meltdowns), but I also know that I've been promised forgiveness.  We shouldn't sit and judge each other.  We should love and encourage each other.  That is probably one of the biggest things I've gained this year....and it has all been through the kindness of others. I'd like to think it has made me a better person, but  we are not any stronger than anyone else going through a difficult time - God is the ONE working THROUGH our family to share His GREATNESS!

Dr. Jerome Groopman says, "Hope can arrive only when you recognize that there are real options and that you have genuine choices.  Hope can flourish only when you believe that what you can do can make a difference, that your actions can bring a future different from the present."  

 

Do you know your choices?

Hebrews 11:1 Now faith is the assurance of things hoped for, the conviction of things not seen.

Jeremiah 29:11 - 'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'

Rumor has it....

Rumor has it....Zeta is a little homesick too.

The people here at Phoenix Children's Hospital have been so good to us, but we all know there's no place like home!

The UTI kind of threw a wrench in things.  Zeta has the remarkable tendency to get all of these strange, sometimes hard to treat bacteria.  So, of course she has been growing one that is pretty drug resistant and the only drug available to go home on is a kind of controversial drug within general medicine....she has been on this drug before (the drug is very commonly used in Cystic Fibrosis patients without incidence) but we knew that it would be ultimately up to the attending physician on staff today as to whether or not we would have to stay here and complete the 10-14 day course of IV antibiotics or if we would be able to go home on the oral dose.  It's the same way when we're at MUSC - some doctors feel okay about prescribing the oral drug and others don't.  We've been trying to prepare ourselves for the fact that we might end up staying here longer while praying that we would be able to go home.

Well, I just got the OFFICIAL news.........We WILL be able to go home tomorrow!! 

Good bye Arizona!

We can't wait to get home, BUT

We will be eternally grateful for the difference Barrow's Neurological Institute and Phoenix Children's Hospital have made in our lives!



Woo Hoo Zeta has a UTI - Did I really just say that?

There is so much that we have to be thankful for....

Zeta has been doing OUTSTANDING!  There are now some definitive plans in the works for her to be discharged within the next few days. 

We got to see a familiar face today!  Someone (all the way from South Carolina) is in Phoenix for vacation and stopped by to see us:)

Steven and Chancelor think they are on vacation too (thanks Mom and Dad)!

I am thankful for all of the prayers that have been answered.  Perhaps, what has made me even more thankful today is that we found out Zeta has a UTI.   I know that sounds weird, but the reason I am thankful is not actually because she has a UTI, but because she is not sick like usual. She is usually VERY ill.  Her seizures increase and can become hard to control and her temperature can spike very high. The only sign of any illness with this one has been that she was fussy.  I mentioned to the doctor that the only time she is ever unhappy is when she has a uti so they went ahead and did a culture on her. I am THANKFUL because we have not seen ANY seizure activity....and her breathing has NOT become labored.  She HASN'T had an out of control fever.  She has a 'normal' UTI...just like anyone else might have after being cathed for a week.  I am THANKFUL because I know this is more PROOF that prayers HAVE been answered! 

Homesick

I miss the grass.  I miss the trees.  I miss the water.  I MISS HOME!

I'm so very thankful that my family is able to be here with me, but I really do miss home.  I've only spent 3 nights there this month. 

I shouldn't be complaining because there have been times that we've spent much longer away, but I think being so FAR away is making it a little worse.

I'm pretty sure  if everyone has to leave before Zeta and I get to, that I might really have a real 'spinning head' nervous breakdown.  Hopefully, that won't happen though....I have a feeling we may be able to leave sooner than expected!

We have been so very  blessed by the people here at Phoenix Children's (I believe they have gone above and beyond for us), and we are completely amazed at how well everything has gone, though I do miss the familiar faces at MUSC!

Zeta continues to do well.  We were moved to the regular floor this afternoon...which is a closer step towards home.  Maybe that's why I am getting so antsy.  They are continuing to monitor the diabetes insipidus.  Everything seemed to have leveled off and her sodium and specific gravity levels (just labs they're watching relating to the diabetes insipidus)  had been pretty stable for over 24 hours until the last set of labs this afternoon.  There was a little change (which was not completely unexpected) so they are still monitoring that. 

Other than that, it is all just a bunch of waiting and watching... and more waiting.  Neurologically, she is doing very well.  The neurology team is very pleased.  It's all just waiting to see how her body continues to adjust.

Daddy stayed with Zeta at the hospital today and Stevie and I took the boys out for a few hours. 

We finally found some green and some water!

This place is called 'Hole in the Rock'.  The picture at the top of this entry is the view from one side, and this is the picture from the other. It was really quite beautiful, but also VERY HOT!! Once we got to the top is was pretty BREEZY....but it's still not home!!!!

Stevie and I continue to be amazed by the outpouring of love from all of you!!  We have surely felt and appreciated the many prayers and acts of kindness throughout Zeta's life, but I will tell you that during this, our latest battle in Zeta's fight, there has been such a cascading effect.  We could spend the rest of our lives trying to thank every single person involved in the complete showing of compassion ....and love and prayers..... and it would still never be enough....NEVER!  I cannot possibly explain to you how it feels to be on the receiving end of all the support we have been given.  It has truly taught me a whole lot more about compassion and giving.

When looking at this picture, taken  today, I find it kind of ironic....see how tiny our boys look..."like ants," Steven said.  A lot of times that is how I feel.  Like this lost  soul living this great big life.  Sometimes I am crushed by the seeming absurdity of it all....other times my breath is taken away by how much people care.  Either way, I get this sense of not being able to breathe.  On the one hand I feel as though our family could not possibly endure any more heartache...and on the other.....well, on the other.....I still cannot comprehend how our family is deemed worthy of so much from others when we have done nothing to deserve all that we have been given.  That is where I know God is at work....we are promised great blessings....if ..... IF...we are willing to receive them.  We have done NOTHING to DESERVE what the LORD continually blesses EACH of us with.  I should need no greater reminder of that than every morning that I awake and am able to kiss my 3 beautiful children!

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“What makes humility so desirable is the marvelous thing it does to us; it creates in us a capacity for the closest possible intimacy with God”

Monica Baldwin



It's all about the way you look at things.

Looking at this picture you would think we were at some type of resort, right?  This is the view out the front door of Phoenix Children's Hospital.



This is Zeta -

3 DAYS after BRAIN SURGERY! 

This is the biggest surgery Zeta has encountered, yet it has also been the smoothest in regards to immediate post-op recovery.

We arrived in Phoenix on Wednesday after a very grand send off from family and friends.  Zeta went into surgery around 9:30 and we were finally able to see her around 2:30.  She had a blood transfusion immediately prior to surgery, and came out with several more lines than she went in with.  She had a tiny hole on the front left side and back side of her head.  She had a larger incision on the top left of her head, but they did not have to shave her hair.  They told us she would probably sleep a few days before really waking up.  She woke immediately and stayed awake all afternoon.  They told us that her seizure activity may initially increase after surgery, simply due to the fact that there would be inflammation and swelling in the brain.  We saw only a few small seizures.  That night she started to show bruising under and over her eyes, but by morning it was all gone.  

Right now they are still trying to regulate the meds for diabetes insipidus (a condition that commonly occurs after HH surgery.)  She has not been given morphine since last night.  They are weaning her steroids (given because of adrenal insufficiency - OUR bodies make what they call 'stress' hormones that help us get over sickness and other insults to our systems - Zeta's body doesn't always make these hormones on their own.)  She has been sleeping most of the past couple of days.  They have started her feedings again.  She has been on her home vent for a while.  We were just getting ready to take her off the vent and just put her back on oxygen, but she is sleeping really hard and her sats have been dropping a little, so we are going to wait until she is a little more alert to try. 

This has been , remarkably and relatively, an "easy" recuperation thus far.  I know that it is, indeed , another one of God's miracles in our life.  The doctors are also very impressed with how well Zeta is doing!  They had some concerns going in because Zeta was not the 'typical' HH patient.  Most other patients with this brain lesion do not exhibit all of the other health problems that Zeta has. 

I have no doubt we will continually witness God's miraculous working within the life of our little girl.

Now, I'm counting down the hours until I get to see my boys again.



I miss them so much!

There is so much Stevie and I would both like to say to everyone that has shown us such great support. Words cannot possibly do justice to the gratitude that we feel within our hearts.  Hearing, seeing, and feeling the support around us often helps us to push on when we feel we can't bear another minute.

The things that we see happening in our lives and around us exemplifies the Christ-like attitude that God intended when he created man.  Sure, we all have our hang-ups - and God does know I surely have mine, but when you see the way that our family and friends and community has come together to PRAY for our little girl and to give PRAISE to HIM for all that has been accomplished it is absolutely amazing.  For us to be the recipient of such goodness from everyone around us is very humbling....you know, you kind of always expect everyone to be 'looking out for number 1'....but that is not our experience at all.....people are compassionate, caring, giving, loving....All of the traits that God showed (and continues to show) by sending Christ to die on the cross.....All of things He gave up in order to make life better for us.....

Sometimes, I feel as though I ramble and ramble ...on...and....on.....and I know sometimes I probably don't make a lot of sense to those on the outside looking in.....but ....there is so much that I feel like I have to say....and so much that I need to share.....about the gift of LIFE....the gift of LOVE.....and all of the UNEXPECTED BLESSINGS I've been given!  Thank you for letting me share these things with you!

I am infinitely grateful to the life which privileged me.
Jacky Ickx



Many Praises!

Then Jesus said, "Did I not tell you that if you believed, you would see the glory of God?" John 11:40

This was Tuesday night.  The night before we made a 2,000 mile trip across the country. The night before we witnessed, first-hand, the outpouring of love of our friends and family. The night BEFORE the night our one-year old had brain surgery.  

TODAY is the day our daughter had BRAIN SURGERY.  I keep telling myself that.  It is pretty surreal.  Everything has been looking pretty good so far.  The surgery, itself, went very well.  Recovery, immediately post-op, has been pretty impressive.  We were told last night to expect that she would sleep for at least a couple of days.....maybe longer, but she has been awake and alert most of the afternoon.  She has had fever, but this is not uncommon in a big surgery.  Her incisions are remarkable.  They are very small.  To know that they went to the very center of her brain - a place that most surgeons are reluctant to go - to know this, and to see the tiny incisions, is really quite inexplicable.  You can just now see the bruises starting to form over and underneath her eyes, but she is still Zeta. She is playing and trying to pull out every line and iv.

TODAY is ONE of MANY days that I truly realize how very blessed we are.  TODAY is one of many days I cannot even begin to understand the outpouring of love and support from all the people we know (and many that we don't know).  It is a very crushing feeling.  I don't know mean that in a bad way, I just can't think of another word for it.....humbling perhaps?  but it is so much more than that.  It is stepping back and realizing just how much has gone into making this day happen, and every single person that has played a part in the success of today....and not only today, but every day up until this moment.  It is realizing that there is something - or rather SOMEONE- so much bigger than us working through friends, family, medical staff, flight staff, insurance people, complete strangers, and who knows else.....It is realizing that although we are only human, there is a Force that is stronger than anything we can imagine, and that so many people are busy doing His work.  It is knowing that God has been with us all along and that FAITH is what has brought us to this point.  Sometimes FAITH has been the ONLY thing to get us this far.  It is knowing that no matter how insignificant we may feel, that God has very significant plans for us.  The only thing we have to do is receive His invitation.

"Where there is great love, there are always great miracles!"

Running around with my head chopped off!!!

Great news!

Zeta is getting discharged today.  She is still on continuous feeds, but we can work on transitioning her back to bolus at home.  She looks and acts great!

Brain surgery is still on for next week in Phoenix, so I am a little panicked about getting home and unpacking and repacking. 

I'll try to update as much as possible!  Please keep the prayers coming!!!

Note to self....

Note to self.....QUIT TRYING TO EXPLAIN THINGS AWAY....

I know, as parents, we all get caught up in this trap.  I should have learned last week.  I tried to keep Zeta home, with fever (because her last couple of fevers only lasted a little while), but shortly after we got to the hospital the fever was out of control. So, Tuesday we were released from the hospital...yeah, released...some of you probably didn't even know that.  Anyway, we got home around 4 on Tuesday.  Let me tell you what happened before then....

After Zeta's morning feeding on Tuesday, she vomited (FROM HER MOUTH) she has not done this since having the fundoplication and g-tube to prevent GI reflux. Other than that she seemed ok, and I was ready to get home so I convinced myself (and the doctors) that she had to of become sick because she was ,inadvertently, left lying flat on her back during the feeding.  So, after a while we were released.  Once we made it off the elevator she got sick again...I convinced myself it was just stress so I gave her some medicine and we came home. After we came home....you guessed it....sick, AGAIN.  By this point, I was knew something else was going on, but still did not want to stress her out more with a ride back to Charleston so I chose to stay home...well, of course nothing worked.  She just seemed to be getting sicker and sicker....However, she did well through the night, but yesterday morning she was getting sick again so I decided to go ahead and bring her back.  I called the hospital and they decided to directly admit her so we would not have to go through the ER. 

Fortunately, all of her labs have come back negative for infection.  Some trend in her labs leads them to believe it is some type of viral process. So here we are, AGAIN.  It took two and a half hours to get an iv this time.  They finally had to call the dr and a sedation nurse to get it in.  I think we are leaning heavily toward a broviac or some other type of permanent access.  It's heartbreaking seeing her stuck all the time, but the question is...does the risk outweigh the benefits? She has been on a slow drip of pedialyte (along with fluids).  We've had to stop the pedialyte a few times due to her getting sick, but I think she is doing a lot better.  She is getting Zofran to help alleviate the gagging and wretching. Hopefully, she will be over it soon.

I've been in contact with Phoenix daily.  Her surgery is still scheduled for next week, as long as there is no sign of active infection.  They are keeping a pretty close eye on her.

So, we're here, but she is stable and doing much better.  This virus just seems to be lingering a bit, and with all of her health issues any sickness can cause her to become very ill, very quickly.  Thank you for continued prayers!



This was right after her g-tube surgery last June.  I was so excited that she didn't have that nasty NG tube on her face anymore!  Her hair sure is longer now:)

 For my Barnwell friends....GO ERIC!!!!!!


“(1)Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, (2)through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. (3)Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; (4)perseverance, character; and character, hope. (5)And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” – Romans 5:1-5

Happy 4th!

Zeta slept through most of the 4th of July, but no fever and no seizures!  I think we are getting ready to go home!

God is Great!

Zeta still has a slight fever and is still a little swollen, but she is looking a lot better. She has been awake for about an hour and we see some of her little personality coming back. A drastic change!!!! Hoping to get moved out to the step down icu today!

So often we dwell on the things that seem impossible rather than on the things that are possible. So often we are depressed by what remains to be done and forget to be thankful for all that has been done.
-- Marian Wright Edelman

It has been confirmed.....a definite uti....'definitely, most probably' in her kidney. 

The good part is the blood cultures still have not grown anything out. Only about 18 more hours to go and we will be out of the worry zone as far as waiting to see if her blood grows anything out indicating she might be septic.

Today has been better.  Zeta's temperature has finally broken this afternoon.  She has rested most of the day.  No seizures.   Her body is still swollen, but her color looks better.

I AM THANKFUL.

I look at how tiny she used to be and how scared we were to bring her home I think she was about 2 months old in this picture.

It's been a year...

It's been almost exactly a year since I've seen her like this.  That's what I kept thinking yesterday. 

So, we did fine with the fevers at home on Thursday. It would hover around 101-102, but we were able to bring it down with tylenol and motrin then the fever would come back.  Very early yesterday morning, her temp spiked to 103 and she had some increased seizure activity.  I gave her some diastat (basically valium) and motrin.  The seizure stopped and her temp started coming down again.  A couple of hours later the fever was back so we decided to go on to the hospital before things started getting out of control. 

In Zeta-like fashion things seemed reasonably well when we first got to the ER, but immediately began to change.  She began having more seizures and her temp was up to 104. Her blood pressure started dropping and she just looked bad.....so bad that when everyone came running in to help her I could only keep saying, "She looks like she did when she went into septic shock....."  The folks in the ER were super!  They took such good care of her.  A course of 'normal saline boluses' were started.  1 then 2  ....I think she ended up with a total of 4 or 5.  She has a couple of antibiotics going now.  Finally, things seemed to calming down so they felt good enough to go ahead and transport her to the PICU...but low and behold...her heartrate began dropping dangerously low as they got her out in the hall.  Someone called for a dr and once she assessed her we turned right back around.  They spent several minutes trying to figure out what was going on....Her heartrate would drop and immediately go back up.  Then it would go to 0 and immediately go back up.  I explained that she had started doing this in the past few months and I thought it was yet another strange neurological thing she was doing...the last time it happened was actually when she was hospitalized in May.  Her cadiology appointment (that we had to cancel) on Thursday was actually in regards to this very thing....I don't know what causes it....she has had several echocardiograms and ekgs....and everything always checks out pretty normal...To put your mind at ease we haven't had anymore of those spells since they've moved her to the PICU.

When we got to the unit things seemed to have settled down a bit, but shortly after her heartrate began to climb and stayed around 200 for a very long time and she was burning up.  Her temperature had spiked again...over 105 this time.  We started covering her in wet rags as she could not have any more tylenol at the time.  They started infusing more stuff in her ivs.  She started looking more and more swollen and started 'the blue spells' again....Finally, around 9 her temp started coming back down.  She has been lethargic, but agitated.  We've finally been able to keep the temps back around 100-102 today, and she seems a bit more comfortable. She has been sleeping most of the morning.  They're probably going to put a central line in later today....I'm thinking this is the sickest she has been since Feb./March although she has has at least 3 admissions since then.....I'm PRAYING that this is NOT a repeat of last July.....

Guess what the initial results are showing?,......UTI........in the words of Sarah Palin, "UNFLIPPINBELIEVABLE"....we just had the test done that showed her kidneys were being protected (due to the procedure she had done in Jan.) But the docs here say that with the initial UA and how sick she is it is all pointing to a kidney infection......they've been very concerned about sepsis too, but her blood pressures are back up this morning, so that is reassuring.....I cannot even comprehend that this could be a kidney infection....so..if it is something else I hope they can find it......If it is all some weird neurological process I hope we can get the brain lesion removed soon!!!

We need prayers, but we aren't the only ones that need it.  There's a floor full of sick kids here that need prayers.  There's a man at University Hospital in Augusta that has a wife and a little girl fighting hard that needs your prayers too. The world is full of people that need prayer.  We all do, but I know that there are miracles everyday.  I pray for the miracle of  healing and peace for my baby.
Exodus 14:14 "The LORD will fight for you; you need only to be still.”