We are Thankful!

We had a wonderful, wonderful Thanksgiving in PA with my family.  I started 2011 not knowing if we would have Xavier with us for the 4th of July, let alone Thanksgiving.  I woke up bright and early Thanksgiving morning, got down on my knees and thanked God for allowing us to make it this far.  We his the road at 4 am.  X and Nate were fast asleep before we hit the parkway.  It was a quiet drive.  Xavier was a doll.  He slept and played the whole way.  It was so good to see my family.  My mother just loves all over X.  He lights up when he sees her.  Connor got to spend some time with his baby cousin.  Poor Tyler was still not feeling well.  He is such a sweet boy.  He stopped in to see us, but was so worried about getting the baby sick, he stayed in the other room.  He spent the holiday with his mom and her family.  He was missed, but I love him so much for thinking of Xavier.  It was a good old fashion Thanksgiving at Grandma's house.  Aunt Gerry got to spend time with X.  She   loves him so much.  It was just nice to be able to show him off (not too much) and relax a little.

It kinda stinks that the holiday season runs right along with cold and flu season.  I didn't take Xavier to church..(although I really wanted to).  I am just too worried about him getting sick.  He was so good.  He slept well, he ate well.  He was so pleasant to be around.  Thanksgiving also brought with it Xavier's 6 month birthday.  6 months is big for any baby, but in the heart community, 6 months is huge.  Finally you are post Glen and most babies are feeling good.  It is a joyous occasion.  How blessed we are to have Xavier and two amazingly supportive families.  We could have never made it through without the support of our friends and family.  I am really counting my blessings, not just at Thanksgiving time, but every day that I wake up and get to be with Xavier.  I pray everyday for those who are just learning that their baby has a heart defect, for those in the hospital, for those at home recovering, for those who have lost the fight, for those who continue to fight.  Becoming a heart mommy has changed me...for the better.  I am a better wife, a better christian, a better daughter, a better sister, a better aunt, a better friend, a better person and I am sure a better mommy.  I now know what is really important in life and Xavier taught me that.  Amazing what a half a heart can do!

Baby's First...

Xavier is doing well.  I am trying to break the bubble, but it is hard for me.  I am trying to only take stats once a day, it is hard for me.  I am trying not to obsess over every single thing he eats, but it is hard for me.  His little body is still adjusting to his new circulation.  His heart rate has been a little high..(again I am pretty much the only one who is worried).  The last echo looked good.  So I try to enjoy our moment together.  I try to give my worry over to God.  I have to trust that things are going to be ok.  As fall approaches, I am looking forward to a sack full of firsts.  I am happy to report that Xavier is rolling over from time to time.  Sometimes on purpose and sometimes by accident.  He also experienced his first snow storm and his first black out, both before his first Halloween.  We are getting out a little more.  We took him to Target one afternoon.  I never relized how dirty public places are.  I am pretty sure I could see the germs on the people.  We take X out for walks.  He spends a lot of time playing on the floor and in his bumbo.  He is a happy little guy.  We are moving toward solids.  He is growing out of all his clothes.  He is wearing 3-6 and in come cases 6 month clothes.  Please continue to follow our blog.  Please continue to share our story and raise awareness. Many babies go home from the hospital looking healthy only to return days or hours later in cardiac arrest.  It takes a simple 2 minutes hooked up to a pulse ox machine.  It can save many little lives.  I hope to raise money for CHOP so they can continue the fight against CHD.  I am setting up a page you can access through the blog where you can donate money to CHOP in Xavier's name.  It is now a part of my life to make people aware of HLHS.  WE LOVE YOU XAVIER!!!  KEEP FIGHTING LITTLE MAN!!

IT IS TIME TO LET GO...

Xavier's body was having a hard time adjusting to his new circulation.  He was not eating the same, he wasn't peeing or pooping the same, his stats were all over the place..I was concerned.  I was the only one concerned.  They just kept saying...this is how it goes, give him some time.  That was hard for me to do.  These people had hard wired me to worry.  To check his temp, his stats, to write down every ML that he drank, to keep track of every pee and poop, to weigh him every other day.  Now they were telling me to relax.  Alyson even took my scale back :(  She said we didn't need it anymore.  She also said that it was up to us if we wanted to keep the pulse ox.  WE KEPT THE PULSE OX!!
After the Norwood you build this bubble.  You become comfortable in the bubble.  You control who comes in and when you go out.  It was safe.  X was safe.  We were safe.  I became super stand-offish.  One day in the doctors "well side", a little boy started walking over to the car seat, pointing and saying "baby".  I made Nate pick up the seat and hold it on his lap.  The poor little boy got tears in his eyes.  I didn't care.  My heart was cold to the needs of everyone else but Xavier.  And I guess that's what a mother does.  Now I was told to stop doing all those things that kept him safe and RELAX.  WHAT??!!!

After morning rounds on Friday, we were handed our walking papers.  Not before Xavier and I made a trip to child life to pick up his beads for Beads of Courage.  He earns a bead for every procedure, needle stick, xray and echo he gets.  He is so brave and I am proud that he can be a part of this wonderful program.
I put his beads in order of events.  It is almost like they tell a story.  One day he will be able to look at those beads and be reminded of how special and strong he is.

As we were packing up to go home, we got a little knock on our door.  It was none other then little Kellen and family, coming to see us off.  To see Kellen is to see hope.  He really just gave me the boost I needed to go home and tackle this next chapter in our lives.  He is so healthy and doing so well.  I am super excited to set up play dates with him.  It is important that X have some HLHS friends to talk to and grow up with.  Kellen will be his heart friend forever!!

So there we were..heading back home.  Nate had a gig that night, so his parents came to stay.  They headed back to Rhode Island on Saturday.  My mom came to spend the week with us.  It was so good to have her there.  On Wednesday, October 26th we went back to CHOP so Dr. Wernovsky could see us for a post op.  He was happy with everything.  We were going to get X his RSV shot once a month, see Dr. Fernandez once a month and come back to see him in January.  He told us how proud of us he was...took a picture of X, gave us a hug and sent us on our way.  As I was walking out the door he said..."It's time to let go a little, Jackie."  "I will try my best", is all I could say.  I AM STILL TRYING!!!

Welcome to CCU..may I show you to your suite....

We were walked over to the CCU from the CICU on Sunday afternoon.  It is such a great feeling to have your little parade across the bridge to "the other side".  There are 3 different CCU rooms.  There are small private rooms that share a bathroom with the room next to them, there are double room which hold two patients and those patients share a bathroom and there are big private rooms that are on the ICU side that share a bathroom. If the room next to you is empty or has a baby, the parents can use the bathroom.  If they have a child or teenager (and at times even adult cardiac patients are at the hospital) then parents have to use the public bathrooms on the floor. When X went to CCU after his Norwood we were in a small private room.  When he was admitted in August he was in one of the large private rooms.  We lucked out again.  There is one double room that for some reason they can not fit two beds in.  Which means you get a double room to yourself.  Somehow, we got that room.  SO on one side was Xavier's crib and a couch for me to sleep on and on the other side was two chairs, and a couch for Nate.  He even set up shop and worked.  We even both got to stay, which never happens.  We had our own bathroom and shower.  We had a view of the atrium, which is home to the Ryan Seacrest Foundation Radio Station.  While we were there, Plain White T's and Gym Class Hero's were the guests.  

Our biggest issue in the CCU was Xavier's O2 stats and his feedings.  He passed his swallow study with flying colors.  It was time to start going down on the thickener.  It was hard for him.  He was use to that thick formula.  We are still working on being completely without the thickener, but he is getting there.  

For a while, I was sure we were going home with the oxygen.  They would ween him off and then his stats would drop, then they would put him on again..and back and forth.  It just took a little time for his heart to adjust.  Everyone kept telling me to just give it time. You expect things to be better right away post Glen.  It is sometimes easy to forget that my little man just had his SECOND open heart surgery and he was only 4 months old.  I had to keep reminding that cynical voice that I carry around with me to be patient.  It took some time but he finally got off the oxygen....and we have been in the 90's every since!!

You meet a ton of doctors and nurses when your at CHOP.  Some have become like family to us.  Hadly and Lori (two amazing nurses), Dr. Wernovsky, Dr. Gaynor, Dr. Roxanne, Dr. Goldberg, Andrea (the awesome echo tech) Alyson and Meredith (fantastic NP's) and some you see once and never see them again.  Since you must be pretty fantastic to be at CHOP I have learned to judge them on one very simple thing...how long it takes them to comment on how cute Xavier is.  Funny..they have all passed my test!

Headaches and Pigtails

The best thing about the Glen is that the babies come back from the or with way less tubes and wires.  Xavier came back without a breathing tube, which makes a load of difference.  All he had was a chest tube, a bandage over his incision site, some lines going into his heart, an art line in his wrist and an iv. He was a bit swollen but not as pale as i had expected. To be honest he looked great..but he felt horrable.  He wasnt really awake but he would cry out often and whine .  We had been warned by everyone that the Glen produces killer headaches.  Nate and I both suffer from Migraines, so I could only image the pain my little fighter was in.  The had in on Morphine and Tylenol.  You always knew when it was time for more meds.  Nate and I sat by his bedside all afternoon and into the night.  We were waiting on rounds when I started to notice his stats falling.  Being that I was his home "nurse", I felt a sense of concern, because his heart rate and O2 was falling.  When they rounded they notices the same thing and starting messing around with things to try to get him back up.  I had to leave.  When I left his heart rate was 82 and his o2 stat was 73...NOT GOOD.  I went to the bridge and began to pray.  Nate had stayed in with X and we were texting back and forth.  I knew that he was not being 100% honest with me..just telling me what he thought I needed to know.  His O2 dropped..LOW..they gave him NO2 to help his stats.  That brought them back up, but something was still wrong.  They did a chest X-ray and Nate tells me that the attending said.."That's not normal"...Here we go again.  Nate came out and told me that Dr. Gaynor was on his way in.  Turns out that some air was trapped in his chest in a spot that the chest tube could not get it out.  It was a lot like last time except for there was not much blood, just air.  The pressure of the air had made his lung collapsed.  They were going to put another pig tail tube in.  It is just a small tube at the side of the chest to help the chest tube drain.  Dr. Gaynor was there in 10 minutes.  They got the tube in and his stats were fine again.  This seems to be his MO.  We stayed with him for another hour or so and then off we went to get some food.  We totally missed dinner.  At least now we were not limited to crappy McDonalds food.  They recently started to keep the cafe open later at night.  After we ate we passed out in the sleep room.  All was well.

The next day X was awake most of the time.  Speech stopped by to check on him.  We fed him and he ate really well.  She said that she wanted another swallow study to see if we could start to take him off the thickener.  Things were going well.  He was still in pain, but all in all doing ok.

Then he started to vomit.  He couldn't keep anything down.  They took him off feeds and just gave him IV fluids   The nurse said that maybe we pushed him with the formula.  Often they will give kids clear liquids before the formula but since they could not thickened it, he couldn't have it.  Friday night was rough for him.  He just seemed sad.  The nurse called at about 7 and asked us to come sit with him.  I went and just talked to him and rubbed his head.  Later on Saturday he began to eat again.  Slowly, but he was keeping it down.  That night they moved us to a private room on the CICU.  By Sunday morning, they moved us to the CCU.  I could not believe that just 4 days after the Glen we were in the step down!!!

Bring on the GLEN!!!

It was time.  We packed up everything and headed back to Philly.  The drive down felt like it took forever.  The first day we just went to the clinic and he had the normal tests.  EKG, Echo, Xray...we signed consent for the surgery and the MRI.  There was no room at RMH so we stayed at the Holiday Inn again.  Xavier knew that he was not at home so he was fussy.  Also he was NPO after 11 so he was not happy when he woke up and I could not feed him.  We had to be back at CHOP bright and early on the 12th.  His MRI was at 6:30 am.  First, they were going to take a look at his vocal cord, then a heart and brain MRI.  We waited in the recovery section for them to come and get him.  I kissed him goodbye and off they went.  We got some coffee and waited for about two hours.  Soon they came out to get us and we went back to recovery to be with him.  He was so pale.  He had a hard time waking up and he was crying out.  I held him for a long time.  Finally I got him to eat something and they took us to a room in the CCU.

Once he was out of his fog, he was back to his normal self.  We received the great news that the clot was gone and left no sign that it was even there.  Score one for X.  At one point a doctor came in to talk to us about his blood work.  They were concerned about an elevated level in his blood that can mean heart failure in adults.  They are still not 100% sure what it means for kids, but there was talk of holding off on the Glen and doing a cath of his heart instead.  A team met including Dr. Gaynor and Dr. Wernovsky.  A repeat EKG was done and his function looked fine.  The hypothesis of the team was that his heart was being overloaded with blood due to the shunt and he was just ready to have the stage two.  Once some of the blood was flowing directly into the lungs it would take the load off his heart.  We were going on as planned and we never heard another thing about poor heart function again.  

We ended up getting a room at RMH in Philly, but Nate and I stayed in the hospital with X the night before the surgery.  My mother was there along with Nate's parents.  We decided to show a united front and make T-shirts to show our support for X.  All of our family and friends also wore blue and sent word of encouragement.  He was not even taken for anesthesia till about 12 noon.  It was going to be a LONG DAY!!

The only thing that kept me going was getting these pictures.  Some to my phone, some to facebook, some to email.  It gave me the extra boost I needed to get through this one.  The Glen was much worse then the first.  I knew X now.  He had a personality.  We spent every hour, of every day together.  Now I just had to sit there and wait.  It was the same game as before.  The nurse called every 45 minutes with updates.  This time I found myself leaving the room when the phone would ring.  All the updates were good.  Soon we were bedside again.  The best thing this time was that he came back without the breathing tube.  But the hardest thing was that his chest was open again..and he was in PAIN and in a way it felt like starting all over again.