Jack's first surgery

DAY 1

Jack was such a champ this morning.  He couldn't eat for 6 hours prior to surgery.  I woke him up at 4 to feed him so he wouldn't be completely starved when he woke up.  He was so cute when I picked him up.  He was half awake but nursed well.  I put him in his highchair to try to give him cereal. He took one bite at that was it.  He had the sweetest face.  He just looked at me like what am I doing up so early mom. Around 7 the doctors nurse called and asked if we could get there sooner. The case scheduled before Jack was cancelled so he was moved up. This was great news. The sooner he went in the sooner he would be asleep and not be hungry. We arrived to the hospital about 930 and almost immediately went to checkin. We changed Jacksom into his "lovely" peach hospital gown. Peachy loved it. He really was so good. Hardly any fuss. We stage with him until it was time to walk into the OR. The anesthesiologist carried him in. Jack looked at him and looked at me with just a little whimper but was so brave. He walked him down the hall and I lost it. I was pretty proud of myself for holding it together in front of Jack. We are so blessed to have such a wonderful family here with us supporting us today.

Trying to keep up with everything as it happens today so I don't forget.

10:15- Jack is already asleep. They give him a gas first. Because of his chubby little body [:)] it took them a little bit to get a good IV started on him.
12:00- surgery has begun.
We have been updated about every hour or so on where they are. Dr Douglas nurse, Beth, has been so good gettin us info.
3:20- Beth just came in and said Jack is doing really well.  They finished the reconstruction and he is off the heart/lung machine and on the regular ventilator.  She said it was a smooth surgery.  I can't wait to see him. 
4:25-  Dr Douglas just came in and gave us great news!!! He said that the surgery went so smoothly!  No complications.  He said the ballgame isn't over yet but almost.  He is doing well just going to get settled in his room.  Can't wait to see you little Jack!
5:45- We finally get to see our little boy again!  It has been a long day of waiting.  It is not the easiest thing to see your baby with a million different wires and tubes.  We are so happy to hear how well he is doing though.  The team in the ICU keep commenting on how well he is doing and that he is such a big boy.  Most babies with  heart conditions do not grow on a normal curve.  That has never been a real issue for Jack.  Jack is sedated still from all the medications, which is what they want to continue through the night.  In the morning they will start to wean some and let him wake up a little more and take out his breathing tube.  He did move a little and try to open his eyes, and he grasps my finger. 

Doyle and I can't sleep at his bedside tonight in the ICU but we are just down the hall in the Ronald McDonald House. He has a one on one nurse tonight.  I was really nervous about him waking up and being by himself, but I know he is going to be ok.  Its nice though that I can just walk down there at 3am if I want to see him though.

We are so grateful for our family that sat and waited with us today.  We have the best family unit.  Thank you all for all the calls, texts, and emails.  We are so blessed to have so many people thinking and praying for our family.  Jack is a special boy!  Please continue your prayers for a smooth and speedy recovery.  Love you all!

DAY 2

0530-  Jackson had an uneventful night for the most part.  He started waking up quite a bit more though.  When I walked in early this morning his nurse asked me, "uh is he sitting up at home? cause he was trying to sit himself up just awhile ago"  It is definately harder to see him trying to fight against everything.  He will be still for awhile but then he starts to move around to try to get comfortable again.  He is still getting pretty high doses of the Fentanyl, which his nurse, Sean, said should be enough to put us all in a good sleep.  The plan is to take out his breathing tube after shift change this morning.
0800-  Breathing tube is out!  This is good and bad.  Good because it is one less tube, and he is breathing on his own; bad because they can't give him the same pain drugs that have kept him pretty out of it and controlled this far. 

It has been a rough day to say the least.  Completly breaks my heart wide open when Jack wakes up and sees me, reaches for me and I can do nothing.  This morning when he started waking up it was HORRIBLE!  I was standing there and his eyes were still kinda half open, and he was still pretty out of it, but he saw me and his eyes clicked open as if he knew it was me and then started really freaking out, trying to roll over and grab me.  Mind you, he still has a chest tube, pacer wires, EKG leads, a central line, an arterial line, a catheter, and oxygen (I think that's it). Everything is pretty secure, but still.  I had to make him lay back down and just lean over top of him to get him to settle. I just bawled my eyes out.  I felt so helpless.  If I could take his pain I would.  Our chiropractor's wife is a nurse practioner here at Children's.  I have never met her before but Dr. Brian said he would have her come check on us.  She walked in just as I got him settled and asked me if everything was ok.  Umm, No, Jack is in pain I can't help him.  She then told me who she was and said she would go get someone.  She came in at the perfect time.  New orders received to get him some new pain meds on board.  Nothing was really working though.  Jack was still so loopy and hurting.  He was moving and fighting because he was uncomfortable, and uncomfortable because he was moving. It was just a vicous cycle.  They even let me try to hold him to see if it would help.  I think it was more comforting for me to be able to hold him again, and maybe it helped him a little.  As the morning went on the more he woke up and the drugs were wearing off the worse it got.  He has no voice either. It's just pitiful. We had to just lay over him like we were holding him.  He was very combative.  He was fighting so bad and wouldn't relax to breathe properly.  Plus, his airway was so swollen from being intubated. His blood gas wasn't looking so hot so they decided it would be good to put him on CPAP.  This is to push pressured oxygenated air into his lungs.  He had to wear a crazy contraption on his head to hold it in place- just one more thing on that he would hate.  He would not settle at all.  So his IV's and Chest tube are one the right side of the bed and the CPAP machine on the right.  There isn't much length to stretch either way and the doctor rounding at the time suggested to get a tall chair right at the bedside to hold him.  I told the nurse I don't care if I have to climb in bed with him to try to calm him.  She kinda looked at me like,  uhh I don't know bout that...He is in a crib... She was thinking nurse/safety mode, and I was thinking mom mode.  Well we got the chair, but as I was picking him up I had to scoot onto the bed anyways. It was just easier.  So I sat in the crib holding him.  Sometimes you just gotta bend the rules a little.  Still, he would fight.  Finally about 3pm he started to stay settled.  He fell asleep in my arms.  I didn't want to move.  After about 30 minutes we situated him laying back down in bed. Snuggled him all in and he was out! Thank you God!  He had finally turned the corner.  Funny thing is the CPAP kept alarming saying that it was disconnected. It wasn't and it looked like it was in his nose but it actually wasn't. One prong was completely out and the other was kinked blowing sideways.  So he was getting blow-by oxygen, but not the pressure. His oxygen was still 100% though and he was sleeping so they said he is fine.  "don't poke the sleeping bear" That was our motto this afternoon.  His blood gas was perfect now, so no worries.  The doctor wrote orders to change the CPAP back to just a nasal canula and DC his arterial line, and half of the lines and fluids.  Yeah we are loosing more tubes! Now without the CPAP he can eat! First Pedialyte... He inhaled it. After they made sure he tolerated that he was able to have a bottle.  Daddy fed him and when he finished the first bottle Daddy tried to take it out and Jack grabbed it and held onto it so tight.  He slept so good that night. 

DAY 3

Jack did so well through the night.  All I can say is thank God yesterday is behind us!  Dr Douglas came in this morning and decided it was time to loose some more connections.  No more chest tube or pacer wires.  Now the only thing left is the central line and his monitor leads.  Until about 2 Jack was still on a medicine that helped to "chill him out" without depressing his respiratory drive.  It helped him relax and not fight so he wouldn't be in so much pain.  It worked.  As they weaned the medicine he would be more and more alert.  Not too much going on for today, which is a good thing.  Just a watch and wait game. Since Jack was doing so well we didn't get a Ronald McDonald room tonight.  They re-evaluate each day to give the rooms to the most critical patient parents that apply.  So I guess you could say it is a good thing in a way.  Only problem was that Jack was still in the ICU in a semi private room.  There was no room out on the floor for him yet.  There was barely enough room for 1 of us to stay so Doyle went home and I stayed with Jack.  They did finally get us to a room at 4:00am.

DAY 4

Dr Douglas came in and saw Jack sitting up on my lap playing.  He said "Well I was going to send you home tomorrow."  I said ok... and then he said "but... he just looks too good to keep here.  I am not one to push kids out the door but there is no reason to keep him here to manage him when you can do everything at home. His Xray this morning couldn't be more perfect and he is doing so well pain wise."  Sounds good to me, let's go home!  Talk about answered prayers! We prayed for a speedy recovery and this was super fast. We anticipated being in the hospital 7-10 days, but instead were there only 3 full days.  Crazy!  I can't believe he had open heart surgery and is going home in 3 days. 

It was so nice to get home.  While we were hanging out at home Jack sat on the couch for 2 hours with Poppy playing with his toys.  He kept grabbing Poppy's hand and chewing on it.  Guess what Poppy found... A TOOTH!  Jack's first tooth was popping through his gums on the bottom left. 

It has been quite a crazy few days.  I am so glad that we have made it through the first surgery.  Based on the law of averages for the conduit, the next surgery will be somewhere between 3-7 years.  We are praying for closer to the 7 year mark, or longer :)  Now if we can just get through the next 6 weeks of recovery and then little Jack can do whatever he wants. 

8 months

Well we thought when Jack turned 8 months he would be recovering from his first open heart surgery.  But, due to an emergency for Dr Douglas the night before they had to cancel.  And that was ok.  I would much rather have a fresh team working on my baby's heart!  I am much more calm about it approaching than I was compared to last week.  It  still is the hardest thing to think about having to let him go through this.  If I could take his place I would.  We are so thankful for all the prayers and kind words from everybody.  A special thanks to those of you who gave blood too.  Even if Jack doesn't get to use your blood we are so blessed that you chose to give in his name. 

I am happy to say that my tummy time hater has finally learned to roll to his tummy!  I didn't think he ever would.  I am glad he learned to do it prior to surgery, before he has a healing incision influencing him to stay supine. Funny thing is, he has been rolling to his tummy for awhile but couldn't quite figure out how to get his arm out from under him, so he would just roll back to his back.  The day he was supposed to have surgery is the day it finally clicked for him.  Now he constantly is rolling around.  (I just realized writing this blog, I don't even have a video yet...Guess we will do that today :)

He can shake his head No-no-no.  For about 2 days he would nod his head yes, but now he only does it sometimes.  

Jack likes to converse in razzing now.  All day everyday. 

Jack is eating all sorts of food now.  He loves to eat!  He thinks if we are eating so should he.  He eats baby food and pretty much whatever I can mash up off my plate. Jacks favorite... Avacado.  I hope that he will be a healthy eater as he grows too.

His jumper is still on of his favorite toys.  He gets so excited playing.  We laugh everytime we watch him in the jumper.  I am dreading putting it away for his 6 week recovery. We just might have to rig something around him so he isn't throwing himself all around and hitting his healing chest.


He loves bathtime and hates if I get him out too fast.  He will sit there and play with his toys forever.  It is so fun to watch him try to figure out new things.  If he has a toy in each hand, you can see the concentration in his face trying to figure out how he is going to get that toy that is floating by. 

He loves reading books.  Most nights before bed we read a story from his little bible and then another book.  His favorite book is "On the Night you were Born."  He gets so excited when I start reading it!  He will sit and listen to the whole thing. 

The night before surgery was scheduled we went to Build-A-Bear to build Jack's first little bear.  It was so perfect.  It has a stitched heart on it, and his name is Champ.  It couldn't be more perfect. 

Jack's favorite song... I love you this big, by Scotty McCreery.  His daddy sings it to him and when it comes on he just stops and looks.

His little laugh always brightens my day.


Today we are just hanging out enjoying our fun little "Jumping Jack." Lol, actually right now his is jumping on my lap and trying to help me type.  I know that he will be back to himself in no time.  I know that everything has happened in God's perfect timing.  Last week preparing for surgery I was a wreck to say the least.  I was so anxious and would just bust out in tears at random times thinking about it.  This week, although I am still a little nervous for Jackson, I have peace that I just can't explain.  Last night Doyle's dad gave me something that just further confirmed it in my heart.  His mom and dad get the little monthly devotional called "Daily Word." It always seems to have the perfect words at the perfect time. The day after Jackson was born we read the devotional for Jack's birthday:

October 24, 2010

PROTECTED

I trust God to protect me and everyone I care about.

I am a creation of God, as are my loved ones.  When I trust that we are protected by God's presence, I am calm, secure and poised to make wise choices. 
    God has given me and all others love and safety, along with the desire and capacity to growth. Growth challenges us to go outside our comfort zones, beyond the familiar.  Anytime I face and uncertain outcome, I know every opportunity for transformation is supported by the protecting presence of God. 
   I trust God to protect me and everyone I care about, because nothing can separate us from God.  I relax and make wise choices, helping others to make wise choices as well. 
    You who live in the shelter of the Most High,... will say to the Lord, "my refuge and my fortress; my God, in whom I trust." Psalm 91:1,2

It couldn't have been more perfect for us right then.  Last Tuesday night our families came over to pray over Jackson.  Last night Doyle Sr. told me that he looked at the devotional that day and was so dissappointed when he read it and it was about world peace. After the surgery was rescheduled he read forward to this weeks devotionals.  Todays totally brings me comfort in knowing how big my God is and that He cares about us so much. 

June 28, 2011

COMFORT

Peace fills my heart as I rest in the comforting presence of God. 

     My idea of comfort may have changed over the years.  As a child, I may have found comfort in a special blanket or a hug from a parent or a loved one.  As a young adult, I have found comfort in the lyrics of a favorite song or time spent with friends who shared my interests and values. 
    While all of these things may still bring comfort, my awareness of God's presence fills me witha comfort that knows no bounds.  In quiet moments, I experience "the peace of God, which surepasses all understanding," a peace that assures me I am never alone.  This peace, this comfort, gives me hope and strength and the assurance that God is with me, now and always.

    This is my comfort in my distress, that your promise gives me life.  Psalm 119:50

For tomorrow...

June 29, 2011

BLESS MY BODY

I am grateful for my body and the blessign of life.

     When I am not feeling my best physically, I take the opportunity to lovingly envision my body infused with divine light.  Gratefully, I bless my bones, muscles, tendons, and ligaments, which support me and allow me freedom of movement.  Silently, I bless the intricate systems that digest my food, circulate oxygen in my blood, transmit my sense experiences, and provide for my protection.
    My body is continuously supporting, repairing and renewing itself in amazing ways.  My body responds with energy and vitality as I fill my mind with thoughts of gratitude and blessing. 
    Do you not know that you are God's temple and that God's Spirit dwells in you? 1 Corinthians 3:16

So please continue to pray for Jackson and our family.  I look forward to blogging about his recovery! 

The time has come...

Well I am a little late on giving a 6 month update... I can't believe Jack is now 7 months.  I wanted to wait until we had all the details about the plans for this next month.  It is time to start planning Jackson's 1st major surgery.  Ideally the plan would have been to get him closer to 1 year old but that is ok.  At his 6 month check up at the cardiology appointment his oxygen saturations were 60's to 70's.  He usually is 70's to 80's. More often in the last few weeks we have noticed a slight change in his color and can see a difference when he gets really upset, which hasn't always been the case.  He is still pretty pink though.  Going to this last appointment I just had a feeling that this was the news we were going to hear.  Even though it has been something we have known would be coming since he was born, it is still hard to really "prepare" yourself for when you are actually there going through it.  I couldn't contain all my emotions as a stood there watching the oxygen monitor, waiting for the doctor to come in.  I am not ready for this.  The hardest part is that I can't bear the thought of my baby having to be in pain, and not able to understand why.  I don't look forward to seeing my happy "jumping Jack" down.  I am trying to focus on the after though, because I know after it all Jack will only benefit.  Last Monday we met with the cardiac surgeon, Dr Douglas.  We really like him! I have read and heard so many good things about him.  I was very impressed with his patience, detail and the time that he spent talking to us at the consultation. Jack is scheduled for surgery on June 22.  He will be in the ICU for 3-5 days and in the hospital for 7-10 days.  After that I will be home with him a few weeks while he is recovering. We will have to keep him pretty isolated for at least the first month after to protect him from any possible infections.  We don't want any infections to compromise his healing heart.  I know that Jackson is going to be fine.  I know there are so many people joining us in prayer for his protection and healing.  We are forever grateful for each prayer!  Thank you to all of you.  It makes me feel so good when people come up to me and say "I am praying for Jackson." It truly blesses my heart.  Jackson is a little fighter and I know God has big plans for him.  So please keep the prayers coming!!! And while you are praying... say a prayer for little Colt Fuhrman too.  He is just 6 days older than Jack and is fighting HLH.  He just received his bone marrow transplant.  Now grow cells grow!  You can follow his story at http://www.coltfuhrman.com/.



Onto some positive updates....

Jack is now weighing 16 1/2lbs and is just under 26 inches long. 

He can sit up unassisted.

 . 

He is eating baby foods, and LOVES it! He thinks anytime we are eating so should he.  He is always trying to grab whatever we have.  He still has yet to cut any teeth though.  He chews on everything like they are coming in but I don't see anything there. 

His favorite activity is to jump.  He loves to jump on your lap or in his jumper-roo.  I call him my little jumping Jack. 

Here are a few pictures from Jack's first Easter.

We spent a family day at the beach.  Jack loved bouncing his feet in the sand. 

 

Since the last blog Jack's cousin Kade Harrison Waraksa was born.  There are 5 months between the boys.  It is going to be so fun watching them grow up together.  I am sure they will be best buds.



Jack is 5months and Kade 1 week



Jack 6mo, Kade 1mo




He loves the water.  Bathtime is a little more interesting now too because he loves to splash. We took Jack swimming for the first time in Peachy and Poppy's pool.

 

 These next couple weeks will be pretty busy trying to get things done before Jack has surgery.  Please continue to keep Jack in your prayers.  We will do our best to keep everyone updated.