FREE!!!

  Chase finally got to go home and be "wireless" today.  Don't have any details.  Just got a text with this adorable picture.

Love how alert he is.  Ready for his first transportation other than an ambulance or helicopter  in three weeks.

First Set-back- Correction

Apparently Chase failed his car seat test and has to remain hospitalized for further monitoring.  More details to follow.  Keep up the prayers.  His parents are obviously very disappointed.

Correction:  Chase passed his car seat test but had an arythmia earlier in the day.  It is apparently not a huge red flag for major concerns but they wanted to monitor him a little longer and perform another echocardiogram (Ultrasound of the heart).  They will know more in the morning.

Coming Home!

  Got a text from Brandi this morning saying, "My baby is coming home today!"  We talked for quite a while last night and she had said it was possible if he had good feedings through the  night.  He is taking a bottle well now, they will just have to transition back to actually nursing.  He was off Oxygen a few days ago and staying beautifully saturated, they just needed to be sure he was eating well.  They are trying to get some weight on him since he hasn't gained while being in the hospital obviously.  As of yesterday he was down to only wearing an ECG, blood pressure monitor, naso-gastric feeding tube and his PICC line.  But, as of today he will officially be "wireless" as Brandi says.  This is a huge relief when it is stressful to have to try to hold him and not pull on anything.  When I asked if she was nervous about bringing him home, she said she was so sick of the hospital now she was ready.  It is a lose- lose when you have three kids at home that need you and a newborn in the hospital an hour and a half away.  Also, she is confident that if they feel comfortable sending him home he should be fine.  Hard to believe one short week ago he was hanging on for life by a thread and now he gets to go home.  Also, I finally have pictures to share.  Ben and Brandi were a little sensitive about sharing them earlier, but now want people to be able to appreciate the condition he was in and see him. You will also be able to better appreciate the "wireless" statement.  So grateful for his miraculous recovery and the many many prayers and fasting in his behalf.   Once again, crying tears of joy.

The line in his head is his PICC line, the one in his neck is his central line, the tubing in his nose is his oxygen and feeding tube.  The bandage on his chest is covering his incision and obviously that is a heart monitor on his chest.   Love that his O2 is being kept in place by a heart shaped bandage.  I am sure that is not a coincidence.   

In this picture you can see he still has the brain pressure monitor which is the silver band on his head.  He is also on the ventilator here and still has his chest drains and the inter-arterial blood pressure monitor in his wrist as well as the kidney monitors on his belly.  Having his eyes open at this point was pretty rare since obviously it was a few days ago.  

What Brandi walked into yesterday.  Life in recovery is tough, who wouldn't appreciate a little "Nemo".

Our Little Miracle

Chase is doing so awesome.  I was able to talk to Brandi for just a few minutes yesterday.  She was whispering so she wouldn't wake Chase up.  Why does that matter?  Because it means he wasn't drugged into another world.  In fact he hasn't been on any pain meds since Friday.  Pretty incredible considering his chest was wide open up until Wednesday afternoon.   He was also being weaned off the Oxygen and has been working up to eating more.  They plan to try a bottle today.  With this type of surgery it is apparently too much to try to suck, swallow and breathe all at the same time too soon after. Brandi says he was awake a lot yesterday and that he was probably trying to make up for missing three weeks.  I am sure she is just grateful to see him conscious.  He also got transferred to a crib and can actually be wrapped up in a blanket now that he doesn't have tubes and monitors everywhere.  We are so grateful for the miracle of modern medicine and that Chase is recovering so well and expected to live a full healthy life despite being born with a condition that would have been unrepairable less than a century ago.

First Hug

I texted Brandi today to see how Chase was doing after his chest tubes were removed.  He had been really weak and his cry was inaudible while they were doing it so she was having a hard time. I wanted to know if she knew when they might get to hold him.   Her response; "I'm holding him right now. . . Heaven"   Brought happy tears to my eyes.  I can't imagine how long four days is when you can't hold your very fragile three week old.

First Meal!!

Chase is still doing great.  He doesn't have to wear the brain pressure monitor anymore, and is currently being fed his first real meal in two weeks through his feeding tube.  Chase is now off narcotics and no longer on a steady morphine drip.  This is a big relief and will prevent him from going through withdrawals.  It also means he is not as completely out of it.  His parents hope to be able to hold him in their arms again as soon as his chest tubes are pulled which may happen today.  He is really peaceful today and even smiling in his dreams.  Big day!

Another Good Day!

    Just as you think you can't cry anymore you start crying tears of joy non-stop.  They removed the ventilator about twenty minutes ago and Chase is doing awesome.  The plan is to remove the chest tubes in a couple hours and even try to feed him through his feeding tube this afternoon.  Incredibly, it will be his first feeding in two weeks!  Brandi says she is just thrilled today and after the emotional roller coaster it is good for the soul to see things coming off.  They are ecstatic he is doing so well, and I am too!  So glad they can have a bit more peace today and hope his recovery continues to go smoothly and rapidly!  Keep up the prayers, he's a fighter, but still has a long way to go.

Happy Birthday Grandpa

Looks like Chase wanted to give us something to celebrate on an emotional day.  Today his grandpa Burningham would have turned 61 years old.  I am sure the best possible present he could have would be to know that Chase is doing great.  They are weaning him off the ventilator and planning to remove his two chest tubes today.  His numbers are great.  Now he just needs to lose the arterial blood pressure monitor, PICC line, Central line, IV lines, Kidney pressure monitor, brain pressure monitor, EKG, naso-gastric feeding tube, and start eating.  Obviously, that is a lot to do in the next couple weeks.  One step at a time though.  GO CHASE!!  You're a rock star!

Back in Surgery

Just as everyone else is putting their halloween costumes on, Chase is changing out of his.    He was doing so well they took him back in to surgery a little sooner than expected to close his chest.  Another big step!  This also means he can have more visitors than just his Mom and Dad.   It has been a good day!

Happy Halloween

For Chase's family today is a happy but tense one.  He is still doing well following surgery. They were able to fix the aortic arch and repair the holes in his ventricles.  Fortunately, the narrowing of his Aorta was just mild enough that they didn't have to surgically repair it at this point.  His parents were able to see him yesterday afternoon.  Unfortunately, no matter how hard they try to prepare you for how they look afterwards words can't really do it adequately.  It was pretty overwhelming for them to see him last night with his chest still open and tubes everywhere.  Sadly it is the scariest halloween costume he will probably ever wear.  Someday they will show pictures, but Brandi says she just isn't ready to yet.   He is in amazing care.  His body temperature is good and he is stable.  Brandi says it is amazing to watch the nurses.  They never sit down because they are constantly checking him and adjusting meds etc.  They have to precisely balance his blood pressure to keep it from getting too high that it puts too much strain on his stitches and tears open his incisions, to preventing it from dropping too low that he crashes.  I am sure it is a delicate dance with a painful, sedated newborn baby. It takes a special type of person to willing take on that kind of pressure.  Brandi says they are so calm though , and she is trying to follow their lead and not freak out unless they do.  Chase has passed one major hurdle but he still has a long difficult recovery ahead.  So far, it is just one hour and day at a time.  Keep praying.

Tears of Joy

Everything went according to plan, surgeon just spoke with them.  They look forward to seeing him in about thirty minutes.

Coming Out of Surgery

Chase is coming out of anesthesia now.  Currently being warmed up and Ben and Brandi will get to see him in about ninety minutes.  No details yet, but the nurse stated she thinks things went according to plan because they are on schedule.  Just grateful he is still with us.  Tears pour down my face as I type this and realize what a difficult day this must have been for him and his family.  As always, still praying, not just prayers for healing and strength for Chase, but gratitude as well.

In Surgery

Chase went in to anesthesia about 8:45 AM.  Surgery and recovery should take 3-4 hours if all goes ideally.  He will have to be put in deep hypothermia while his heart and circulation are stopped.  This can only take place for about thirty minutes before his body temperature has to be brought back up.  If they do not complete the parts of the surgical procedure that require hypothermia they will then have to relower his body temperature to finish.  This will obviously take considerably longer.  Will update as soon as we have more information.

Today is the Big Day!

Just heard Chase is being prepped for surgery.  He will being going in about an hour from now!  Praying it goes smoothly and he begins a quick and successful full recovery!

Chase Got the big suite

Transport went well. They love the new facility! You can tell they are just so much better.

Preparing To Transport

Chase is now being prepared to be loaded up and transported over to the Children's hospital.  Still hoping surgery will be tomorrow.

Third Ambulance Ride

Chase is looking good and will be transported today by ambulance to Children's hospital to prepare for surgery.  Three ambulance rides and a helicopter ride in less than two weeks.  Someday he will think it is so cool he got to ride in a helicopter.  Right now, I am sure his parents are a little less enthusiastic.  Will let everyone know when he is settled in at the NICU there.

Being put on the Life Flight Helicopter Saturday 10-20-12

Snuggling with daddy Sunday 10-28-12

Little Super Man

     It has been a week since Chase was diagnosed with several congenital heart defects.  For his family it has been a draining, exhausting, emotional test of endurance.   He is now off the ventilator and staying beautifully pink as well as maintaining weight which is excellent.  He is showing signs of struggling a bit more as time passes, an unneeded reminder of the necessity of this surgery and the miracle of modern medicine.  Surgery is scheduled for Wednesday and will take a few hours.  On a scale of 1-10 it is a 7-8 in complexity but his surgeon is confident. Afterwards he will be sedated for at least a few days to manage his pain and keep him peaceful in order for his body to heal.
    Chase now has a central line so that his IV lines don't need to be changed every few hours and his IV has been placed in his head in order to give his arms and leg a chance to heal.  Even for a baby he has very sensitive skin.   He was able to be visited by his older brother Saturday.   Following surgery it will be several weeks before Chase recovers and it may be a long time before his siblings are able to snuggle him again.  I am sure when they are both older it will be a cherished memory for Caden.      
    Brandi has told me following Chase's birth this was a much more difficult recovery for her physically.  She was in much more pain than she had been with her other babies.  Despite having a house to move and family to take care of she was in too much pain at times to do anything more than lay and snuggle with Chase.  I am sure at the time my sister felt she should have been up and doing more, but she was given that time to enjoy and soak up her baby while she could. She later said it was heaven to just have to sit and hold him, a precious blessing now that she gets to have him in her arms only short periods of time each day. Despite not being able to be with him all the time Chase still responds to his mother's touch and voice, a sweet gift for  anxious tired mom I am sure.  It is amazing the way Heavenly Father sees the details and blesses us in the strangest ways sometimes.

     I struggle to understand why he and his family have to go through this.  At this time I am grateful they are able to see the miracles that come with it.  First and foremost we are grateful for the prodding of the spirit letting them know something was wrong despite the fact the signs were not overly apparent.  Secondly, it is a tremendous blessing modern medicine can keep him stable; and caring, trained, competent people are courageous enough to walk into the operating room every day and literally take babies hearts into their hands.  Third, it is an overwhelming blessing to see the good in people.  As my sister's family has had to carry this tremendous burden they have been overwhelmed by the people willing to reach out in any way possible.  For me, feeling so helpless hundreds of miles away it is an amazing gift to know there are other people willing to step in and do what I can't.  When I wish so badly I could be there they have shown Christ-like love by performing a service I can't.  Last, of course we are grateful for the gospel of Jesus Christ.  For the knowledge that families are eternal, and Heavenly Father has a plan for us.  I am grateful to know that when my sister can't hold her baby in the NICU and has to drive home and leave him there, he has two angels watching over him.  I have mentioned it before, but just knowing Chase needs my Mom and  Dad more than we do right now, makes it okay to not have them here with us.  I am grateful for the power of the priesthood and the amazing comfort that can come from priesthood blessings, as well as the power of prayer.  I am grateful that despite an uncertain future we can still have peace and enjoy each precious moment here and now.  As Wednesday approaches I hope we all will continue to pray for Chase and his family that they can be strengthened and comforted.  If you would like to send an encouraging word or thoughts to Ben and Brandi please leave comments here so they can read them as they get the time.