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  )