First Cardiology Appointment and NG Reinsertion

We are adjusting to being a family of 7 at home.  It is wonderful to all be together finally!  The siblings are just so in love with their baby brother and sit and stare at him in admiration.  The wait of getting to know this little miracle and all the prayers they have said for him have made this homecoming all the more special. 
It's been quite overwhelming for Mommy and Daddy.  It is a big team process to get all the feedings in (which take well over an hour).  We are pumping, fortifying the breastmilk with Nutramigen, feeding him through a bottle, gavaging down the NG tube whatever he doesn't finish, (which entails first checking for placement and flushing the line when finished) cleaning all the parts, and then starting over with not much time in between.  He has to be fed every three hours, whether he's asleep or not.  Not much sleep for us but lots of coffee!-- While typing this, I'm actually drinking my left over coffee from yesterday.  HAHA!  No time to make new!
He had his first pediatrician's appointment on Tuesday and his first weekly cardiology clinic appointment Wednesday.  He weighed 4.3 kilograms (9.46 pounds) which was the 8 percentile.  He was 22 1/2 inches long.  He has gained on average 40 grams a day which is higher than their goal of 20-30. That is good.  They did an EKG yesterday, took blood pressures in all 4 extremities and checked his oxygen saturation.  His murmer was loud and clear.
We had our first semi-traumatic experience Tuesday night.  Zack was holding him while I was pumping.  The kids were snuggled around him on the couch.  Next thing, I hear Zack scream, "NO!!" as the NG tube was flung across the room, Cooper running out the front door, tears pour down my face!  AAHH!!     It was such an accident and Coop felt just awful.  It took a lot of hugs to prompt him back in and then took Zack, me and Greg to put the tube back down.  After, I was nervous all night that it wasn't in correct position.  I was so worried to put anything down it!  I will probably get swifter and more confident at it soon, as Caleb just pulled it out himself again this morning!  (As you can see in the picture, he was quite pleased with himself!  I captured the cutest smile!)  He now has "no-no" socks on his hands, but he continues to box at his face trying to get it out.
We also had some fun excitement Tuesday night.  Jake lost his first tooth!  It was already loose, but it came out via a "punch" to the face (as he told me).  He was elated to wake up to money from the tooth fairy.  We laughed because now that he realizes he can get money for his teeth, he's going to be trying to pull them all out soon!

Homecoming

Vanderbilt Children's Hospital Pediatric Heart Institute- Hypoplastic Left Heart Syndrome

We are thrilled to have been discharged last night after 6 and a half weeks but also have to be hyper aware of the fact that Caleb is still extremely fragile. Norwood babies (between 1^st and second surgery) are almost flammable- things can turn from bad to worse to life threatening in a matter of minutes. Between these two stages Caleb is at the greatest risk for mortality and morbidity. One of the worst things that can happen is an infection. Even a small cold can send these kids over the edge. Our homecoming is, therefore, bittersweet.  We can not leave the house with Caleb except for doctors appointments and emergencies. If you see us outside, please do not come up to greet him.  While we love visitors, they ask that only those coming to help with siblings/ house come. Please do not ask to hold the baby, as only Mommy and Daddy are necessary.  We can all get plenty of snuggle time when he is stable.  The following list was compiled by the nurses at VCH and we were asked to forward it to friends and family as part of discharge.   If you were wanting to visit (again, this needs to be only out of neccesity for siblings), dropping off food/ going to be around Caleb's siblings-- even away from the home, please make sure you:

1.  Have not been sick in the last week

2.  Have not been around someone sick in the last week

3.  If you have been sick, please make sure to not go near any siblings of Caleb, even away from home.  It is just as essential that his siblings stay healthy, to prevent germs from spreading to Caleb

4. If you have or work with children or in a hospital environment, you must change your clothes immediately as you walk in the door

5.  Have had a flu shot

6. No children under the age of 15 should come over at all 

7. Wash your hands

8. Sanitize your hands the moment you walk in the door (we have a sanitizing station set up beside the front door)

9. Have not smoked or been around cigarette smoke

10. Understand that we are being so strict because this is Caleb's life at stake, not because we do not love and appreciate all of you and your support.

11. Realize that in time, well after the second surgery, things will hopefully be able to relax a bit as his body gets stronger.

12. If you are bringing something by, Call/ text ahead of time so we can meet you outside rather than come into the house.

In general, if you are even the slightest bit worried about any of the above, error on the side of caution! The nurses at the hospital said this is the toughest time for people in general because it seems like a regular newborn homecoming; but it is not, we are simply transitioning from the hospital to a sterile environment at home until after the second surgery and his heart gradually gets stronger.

We will keep you posted as things progress and really appreciate all of your positive thoughts and prayers. Please keep praying that Caleb pulls through all of this with flying colors. God bless and keep each of you. 

An Amazing Daddy

I am one blessed wife.  I have always recognized how amazing Zack is, but truthfully, the thought of him taking "charge" of the 4 rug-rats at home while I have stayed at the hospital scared me beyond words.  Not that he hasn't always been the best Daddy, but we all know that he works a LOT, and isn't around for a lot of the day to day, morning to night routines.  Daddy works hard, Mommy runs the house.  Handing over that responsibility was overwhelming to me, (I admit I'm a "tad" controlling), but he jumped right in.  (Don't think I didn't have a notebook filled with our rules, schedules, and basically every single thing I wanted done--my way-- of course, including post-it notes all over.)

He is Daddy of the Year as far as I'm concerned.  He's done nightly laundry, kept the house clean (no doubt in my mind that wasn't going to happen), kept them fed (with lots of help from amazing friends), played endless games of Monopoly, organized and led driveway basketball games with all the neighborhood kids, done homework with them, "surgery" on a splinter, taken all 4 swimming, taken them all to baseball games, kept them all going to their after school activities, filled out paperwork for company dance (I still don't know what he got her signed her up for!), grocery shopped, and on and on for what has already been over 6 weeks already!  The bonding and relationships that he and the children have developed over this time is definitely a gift from God.  God has given him time to watch them grow, snuggle with them, learn how they behave (good and bad), and to lean on each other when they are missing their "normal" lives and celebrating happy times.  What a blessing they will always treasure!

He has done all of this without a single complaint or whine.  He did say he realizes now why I fall asleep on the couch every night and described himself as just "surviving".  I say he's surviving in the best way!  I miss him like crazy.  It's been hard to lead our separate lives these last few weeks, but we didn't have another option and just went with it, praying for each other, and knowing that our relationship will forever be even stronger because of this.  As I look at this little miracle in my lap right now, I can see his Daddy in him-- his eyebrows, mouth, long legs, and laid back personality.  (I hope he is a neat nick like his daddy too!)  I thank God for you every minute of every day, Zack.  I love you.

Reflux

Today started off early and a bit rocky.  He has shown significant signs of reflux yesterday afternoon and overnight, so they stopped his feeds by bottle and fed him continuous over the pump to slow them down as well as added Prevacid (he already takes Pepcid).  He had been on Prilosec but they had taken him off it early last week thinking he was not needing it; however, he's now showing us otherwise.   Prayerfully this will help him.   Throughout the day, we started back bottle feeds and by tonight's feeding, he was back to his prior goal of 70 ml.  He had a pretty good day today with a few de-satting episodes, but he was able to pull out of them within a few minutes.  A physical therapist came and worked with him yesterday and an occupational therapist came today.  They worked with him as well as gave me ideas on how to work with his muscles as well as massage.  These are important as he hasn't gotten the typical stimulation or movement that babies usually get throughout their initial weeks of life.

Summer kickoff

Summer has begun!  Thanks darci for taking our annual picture.

First Cardiac Catheter

Check our first cardiac catheter off as done.  The artery that comes off his shunt was slightly narrowed so he dialated it with a balloon.  Everything else looked great and as it should.  The narrowing could be the cause of desatts but not sure.  Time will tell.  The anesthesiologist team said that when they put the ventilator tube down they had to go down a size from his last surgery due to the size of his trachea.  This could possibly be due to swelling or even stenosis and this could also potentially be causing the desatts, but I didn't get the feeling they suspect this. He's on the PCICU floor tonight for close monitoring.  He's in a great deal of pain which was causing him to hold his breath (& desatt) so he was given pain meds which made him so sleepy that he was having to be kept awake to get him to breathe!  They are also going to give him meds to reduce the swelling of his trachea.

I will Rejoice

This is the Day that the Lord has Made.  I will Rejoice!  This has been our go to verse throughout our hospital stay.  I've had it written on the white board in the hospital room.  Precious friends text it to me to start my days off right.  Ironically, on the day that I wrote it on the board, my friend Erin saw a friend's friend post it on her facebook page, and on that very same day, the Nevil family posted a picture of Lauren's coming home banner that had the verse typed as the memo!!  Amazing reminder signs from God.  Today, Nicole (who somehow manages to have her cell on during church and ready to record-- 2nd week in a row- haha!) recorded the choir singing this song and texted it to me!  So grateful for the gift of today!

We ask for prayers for little Caleb.  He's been having de-satting episodes for the past few days that started being consistent around 4 this morning.  The doctors put him on oxygen (after not wanting him on it for the past few days)-- and want him to be watched very closely that he doesn't go over 85% saturation as that is bad for his flow on the other end of the spectrum due to his shunt.  After ruling out most possible causes for the de-satting episodes, they have decided that he needs to have a cardiac catheterization to try to figure out the cause.  He is the third case tomorrow (Monday) so I suspect it will be in the afternoon.

Cardiac catheterization is a specialized procedure in which a long, flexible tube (catheter) is inserted into a vein and guided into the heart, allowing a close look at the structures inside.  It is done to obtain diagnostic information, such as pressures and oxygen saturations in various parts of the heart.

A thin, flexible tube (catheter) is inserted into a blood vessel, most often in the groin area (the crease of the leg where it bends when sitting). The catheter is guided up the vein towards the heart. The cardiologist uses x-rays, called fluoroscopy, to help visualize the movement of the catheter. The catheter enters the right atrium - the top right-hand chamber that receives oxygen-poor (blue) blood from the body. Eventually, the tube will be guided into the right ventricle, the pulmonary artery, and perhaps the right and/or left pulmonary artery branches.

While inside the heart, several things are done to help evaluate the heart structures, as well as the pattern of blood flow inside the heart, including the following:

Blood samples are drawn from each chamber and each blood vessel, and the oxygen content is measured.

Blood pressure measurements are made inside each chamber and each blood vessel.

Contrast dye is injected into the catheter and, as it flows inside the heart, x-ray films are made of the path the dye takes throughout the heart.      (for more information, see :http://www.chop.edu/healthinfo/cardiac-catheterization.html  )  

Endure

Endure.  My great uncle wrote us a letter that made me ponder the significance of this word.  He said that whenever we think we've reached the end of what we can endure, we always go further.  We endure so much more than we think we can throughout our lives.  In thinking about that, it encourages me to get past this mental block I'm in.  I feel like the last few days, we've been stuck trying to figure out what is causing Caleb's oxygen saturations to drop below the preferred range.  When I say stuck, I mean trying different approaches, tests, waiting, then retesting, and then trying something else, then doing all this again, as nothing has made improvement.  This is so frustrating to watch, as I'm SO ready to get us home; however, it just seems to be going slower and slower.  I have moments of sadness, jealousy of the world that is going on outside my "confinement", and fear.  I wonder how much more I can stand (endure) of missing the kids' everyday lives, their activities, including Jake's 1st All Star game tonight;  of staring out my window into a gorgeous view- of another building!-- although it was slightly exciting when I saw men repelling to clean the windows the other day.  The worry that if I walk out for anything (even restroom), he's going to start crying and then his sats will drop.  Feeling like you have to watch everyone's move to make sure he isn't picked up wrong- scoop, not under his arms.  Hearing the constant beeping of the moniters  (and I mean constant-  every time he desats it goes off.)  Changing his diaper and trying to keep his leads from falling in it, or worse, that anything gets near his pic line dressings.  As I type this, I realize that everything I'm complaining about could be so much worse, and that I should be grateful for that.  I know that it is true that we can always endure more, and the fact is, we will surely have to.  God will get us through this.  As He tells us in 1 Corinthians 13: 7,  love bears all things, believes all things, hopes all things, endures all things.

So proud of Jake on the All Star Team!

Guys repelling down building!

Blood transfusion

Last night (Wednesday) was another sleepless night.  Caleb's oxygen saturations continued to fall below the range of 75-85 and instead of bouncing back, would hover in the 60's and even fall into the upper 50's.  All assessments done were negative and he didn't look in distress.  His coloring was dusky blue and his hematocrit count was a bit lower than last time tested so the doctors suspected a blood transfusion would be beneficial.  He was on oxygen overnight after the episodes and into the afternoon; however, he's been off for a few hours and his numbers have looked better.  Please pray that this settles out, as it is extremely unnerving as well as extending our "stay". 

He had a hearing test done today.  He passed but they want him to follow up due to being on the medicines he's on and being on the ventilator for such a long time.  He liked wearing the cool "headphones"!  The other picture is from his swallow study yesterday.

Swallow Test

Caleb improves his intake every feeding.  Today he finished a bottle two different times!  (70 ml)  He had a swallow test done to make sure he wasn't aspirating and he passed.  He does great most of the time, but then will have periods where his oxygen hangs in the low 70's and dips in the 60's.  They suspect this is just a balance act between him needing to be wet and dry- so they've adjusted his lasix medicines.

CPR Instruction

Zack and I were taught CPR today.  I have taken certification classes in CPR multiple times before.  It's one thing to know it (which I believe everyone should) and another to learn it because there is an increased chance you may have to use it on your child.... Makes it even more scary.  It's true what the nurse taught, which was, doing anything is better than nothing!
Since Zack was up here, the nurse taught him and then he put an NG tube down Caleb's nose, into his stomach, and to check for correct position.  Zack said this was his second "medical procedure" in 2 days.  Last night, he and Darci had to dig (and I say that literally, from what I've been told) out the biggest splinter they've ever seen out of Cooper's little foot.  I think Cooper and Caleb were both pretty mad at Daddy!

Finally, A Picture of our family of 7

Best. Mother's. Day. Gift. Ever.=  Having  precious family of 7 altogether in the same room for the first time!!  Zack surprised me and brought the kids up to the hospital with Panera pastries and Starbucks coffee.  It was the most amazing feeling for us to all be together for the first time in 4 and 1/2 weeks.  The kids were perfect  (I am still wondering what Daddy bribed them with to have been that good!)  They washed their hands 3 times as they entered the room-  gel, foam, then soap and water!  Bo did keep trying to pull the emergency string and say "ding dong!". I took them out to the outside play area that overlooks Nashville while Daddy held Caleb in the room (first time to really hold him-- only other time was just for a few minutes the night before his Norwood surgery.).  They played on a pretend dragon, swung, and searched for the Vanderbilt baseball stadium and Aunt Tracy's house.  :o)
I even got the most perfect family picture of us all -- with smiles from all of them, which is normally impossible.  They definitely treated me right!  It was super hard when they left.  My heart sunk to my stomach, but I just keep telling myself, prayerfully, not much longer.
Caleb had another super day.  We have to keep socks on his hands.  He constantly tries to grab hold of his nasal cannula or NG tube.  He actually grabbed his pacer wires and pulled the suture out of one.  We taped it on because it would be bad news if he pulled the wire out before the doctors are ready.  (The pacer wires run to his heart.)  They said he's super strong!  I learned what his murmur should sound like by listening with a stethascope.  He started eating PONG - which is every three hours by bottle and whatever he doesn't finish, put into his NG tube and given over a 30 minute period.  He did this throughout the day and then overnight will eat continuous.  He ate from a bottle 33 ml the first time and 27 the second.  He spit up a little both times, but it was mainly flim.  I gave him his medicines through his NG tube and was taught how to give him a "spit" bath.  We have to avoid the dermabond over where he had the surgeries, as well as all the leads, pacer wires, and pic line!  I gave his hair a spike- do after!

The Reality

The reality of all this has really hit me this week.  I'm so thankful that we were in the hospital when Caleb went into distress; however, the nervousness of being at home (one day soon, prayerfully) and that it can happen at any time has me on edge.  I realized the reality of how fragile his little life is and will forever be.  His heart will never be repaired, but by the grace of God, will help him function and live a full and happy life.  

I've had multiple people say that I'm do positive.  I laugh to myself because I'm unfortunately so opposite that and pray daily for that gift.  I constantly think negatively and fear the worst.  Of course, being in the PCICU for so long and seeing as much as we've seen, it's easy to be scared.  I just keep telling myself to write positively so that I'll think that way, and lean on God.

One month old Birthday

Caleb's one month old today!  They put a shirt on him and he had the cutest Mohawk after his bath!!  This was the first time he's ever worn clothes.  He's still in the PCICU to keep a close watch on his respiratory rates.  They stopped giving him enalapril because his pressures were a bit on the lower side.  He was within appropriate oxygen saturation range almost all day.  All of his stats were stable and he looked really good.

Back down to the PCICU

The ups and downs continue... we moved back down to the PCICU this morning.  Caleb's saturations hung down in the 60s and this morning started retracting when breathing.  He had to work hard to breathe.  We could see his ribs every breath he took.  We moved back into our old room in the PCICU. Our verse was still on the white board where I had written it:  This is the day that the Lord has made!  Let us rejoice and be glad in it!  I think God sent us this as a sign of comfort that the nurses and doctors will be watching him very closely and cautiously.  Many tests, assessments, echos, and blood work were done to try to figure out what was causing his desaturations and breathing patterns and they started fluids, blood transfusions, and antibiotics just "in case".  All tests came back negative.  After close monitoring all day, we believe that he was "dry" and low on fluids due to the lasix that he is on.  It's a tight balancing act between meds and what he needs.  Respiratory therapy has continued CPPD to work on his collapsed lung, which they said looked better on today's x-ray.  His saturations looked more stable throughout the afternoon.  Prayers that they continue back in that direction!

CPPD therapy

After hanging in the upper 60's and low 70's for oxygen saturation then swinging back into upper 70's, an x ray came back showing his lower right lung was collapsed.  Respiratory therapy has started CPPD to help initiate a cough which will open the lung.  I'm not writing much because I'm typing with my left hand while holding his head upright and gently rocking him.  He's decided he doesn't want to sleep tonight. He's been baby fussy for hours. Great because its very typical newborn behavior; challenging because I can't soothe him like I normally would an infant (can't nurse or put bottle in his mouth;  and picking him up is hard with all the wires!)

Moving on Up

Just one day shy of one month old and period of time, we've moved on up in this big world!  (Up in the hospital to the "Floor", but it is actually a step down cardiac unit.)  He's met all the criteria to leave the PCICU!  On the floor they basically train Mommy to be his "doctor".  He is still on a very small amount of oxygen through his nasal cannula.  They are continuing to wean him off this and watch how he tolerates.  Somehow he managed to get it in his mouth twice today and was sucking on it.  A speech therapist will work with him on his feeds.  This is a big challenge with Hypoplast kiddos because eating is a very hard exercise for them.  His heart has to work very hard when eating and he wears out quickly.  Right now, all of his feeds go through a NG tube.  We will slowly introduce feeding through a bottle and work towards trying to breastfeed.  He has never had food in his mouth (never swallowed milk, had the ventilator tube down his throat for over 2 weeks, and sometimes the surgery could've damaged vocal chords.)  These factors will all determine how he does and contributes to why the therapist has to monitor him very closely.  They also have to be aware of how many calories he intakes.   I got to give him a bottle for the first time today!!!  The speech therapist's goal for him was to take 5 mL from a bottle today and he drank 14!
I'm so thrilled to finally be able to play the role of "Mommy" with him.... feeding him, changing diapers... it's just a bit more difficult with the lines in him and the fear that when he cries and gets mad, his oxygen drops.  We are in our own room now, and the nurse basically lets me care for him, unless I need her.  I'm not so sure how tonight will go-  sleeping doesn't seem possible!
It's also very boring in here.  Not to sound negative, but I'm not used to being by myself and since Caleb doesn't talk back to me yet  :o), it's super quiet.  I think because this is one big step closer to getting home, I'm SO craving it right now.  I'm sad that I'm not at the boys' baseball game, not taking the girls to dance, or filling out her dance paperwork, missing preschool last days.  It's just a day of excitement but ready for the next step, which I don't know what or when that will be!........  Well, I wrote all of this post this afternoon when everything was super calm.  Since then, little man has de-satted and then gone back up over and over.  He's done this for the last 3 hours.  Not looking like any sleep in my future tonight!  It's one thing to not get much sleep due to a newborn baby that has days and nights mixed up.  It's another to not sleep because his Oxygen monitor keeps going off constantly!

Birthday celebration

We had a lot to celebrate yesterday- Jake turned 7 years old! We had fun family celebration all day. He had been a bit sad earlier in the weekend and just not himself. A while back, Jake had set a goal that Caleb be home by his birthday. For all that know jake, numbers, goals, countdowns, are huge to him. We didn't think much of it until yesterday. We really tried to just make yesterday all about the birthday boy. By the end if the day, he was all smiles with a lot of sweat in between from a fun driveway game of basketball!
We ask for prayers for the siblings. They have all done amazing, but we think they are starting to tire of it all and crave normalcy.
Caleb's had a few days of going down from the Vapotherm to nasal cannula to room air and then back to Vapotherm (3 times). As of right now, he's on the nasal cannula and doing really great. His oxygen sat's are staying within the range of 75-85 unless he gets mad and clinches down. The nurse practitioner said that his plication surgery last week cut through so much muscle that it hurts for him to take big breaths and will just take time to heal. This afternoon, his NJ tube was raised 3 centimeters into his stomach to become NG. Overnight he was weaned from Milrinone to Enalapril (heart function medicine). Prayerfully he'll continue to do well off the Vapotherm.
Today I've felt almost like a real mommy. His nurse is wonderful and has a lot of confidence in me. She showed me how to pick him up to hold him (which is tricky with his wires & lines) and even change his diaper- yes, he is almost 1 month old (in two days) & I have only held him three times and never changed his diaper!). As I was doing it, he "exploded poopie". I said that this felt very normal!! I even helped during a sterile procedure- full masks, gloves, & all during a clave change on his pic line.

On the VapoTherm

Overnight Caleb was weaned off his VapoTherm and onto a nasal cannula.  After only being on that for a couple of hours, he was taken off that and was breathing on his own, with no support (and no equipment!).  I could actually see his sweet little face, his nose, mouth, lines of his mouth, cheeks.  He looked so different to me and I loved every second of it.  I was able to hold him.  While holding him, the nurse decided he needed a bigger bed so she ordered for a crib and meanwhile, moved out his old bed.  It took a very long time for the new crib to be brought in and the nurse kept apologizing.  I kept telling her that I was thrilled that it was so long!  I was asked to go to a focus group on the PCICU floor, but I was late due to holding Caleb.  Oh well, the cuddle time was WAY worth it!!

While I was gone from the room for 45 minutes, they did an xray on him.  He got very upset (typical behavior for him) and according to his surgeon who walked by during the event, "turned blue".  He watched him for a while, and decided that he needed more time on the VapoTherm.  He wants him to have more nutrition and allow his lungs to open up more so that he doesn't go into distress. 

Although we've taken two steps forward, and no the same two steps backward, Caleb looks better.  They took out his chest tube today!  I got a bit nervous as I was watching him late this afternoon.  While he sleeps, he goes through times where his eyes roll, but it never lasts long.  (I understand this is normal.)  During this period, he did this for a LONG time--- 10 minutes.  I called in two nurses, but they didn't seem to be worried about it, (and all his stats looked fine) so I tried to relax.  Prayers he doesn't continue this.  It may just be "newborn" sleeping habits, but I don't need anything else that looks out of the ordinary for this little guy!

Extubation- take 2

Caleb had a great night.  They started the weaning process off the ventilator not long after surgery yesterday and continued it through the night.  He did two CPapp trials this morning.  They extubated him midday today and he has tolerated it well.  So far, his oxygen sats have been within the range they have set for his goal -75-85 and his blood gases have come back "just right".  They have him on the VapoTherm.  He's been sucking away on his pacifier.  Prayers for an uneventful night!--  I'm super nervous after the last time he was extubated and am having a hard time not staring at the monitors.  They told me I've got to learn how to watch him for signs because whenever we go home, the monitors won't be going with us!

Plication Surgery Completed

     Caleb has had a good day.  They have not been able to determine a major cause of his seizure yesterday and he has not shown any additional seizure activity on the EEG that they did for 24 hours.  He will continue to stay on the anti seizure medicine, Keppra.  The surgeon said that we may not ever find out what the diagnostic cause was; however, the way it's being treated would stay the same.  He was extremely tired from the episode and slept a lot overnight and today.  He was able to be stimulated, which is good, but I didn't see his eyes open until 10 minutes before they came to take him to surgery (and they were very groggy still).
     He did good in surgery and has about a 3 inch incision starting on his side and going up his back and a new chest tube.  His incision is similar to his big brother's incision scar!  We just were shown his xray and compared it to prior to surgery and it was described to us by the doctor as "GORGEOUS"!!!  Although not a term we like to use on our boys (haha!), we will take it proudly for his xray!!!  Prayerfully, as he starts to wake up over the next few hours, they will start to turn down his ventilator and he will tolerate it as this continues over the next couple of days leading up to C Papp trials first, then extubation.
     Yesterday was a very hard day for us.  As the surgeon told us, there are a million things that "could" happen along this marathon and they can't list them all and just pray we don't experience them; however, the seizure hurdle was one we hit.  I cannot describe the difference in how I felt yesterday and today.  Today it truly felt peaceful in his room.  We are so grateful for all of the prayers from all over.  It was so comforting and all I can say is that I could honestly sense angels surrounding him in comfort today!