Jackson Update – CICU Day 5

They closed Jackson’s chest today!  Woot Woot!

Posted in Farmer Family, Jackson's Heart Story

Jackson Update – CICU Day 4

Jackson has done great today.  Last night they moved him from one room to another, because of several equipment problems.  The move seemed to do the trick, because they haven’t had any problems with the monitors since they made the move.
After the surgery they continued to monitor his Hematocrit and blood gases very closely, and made some changes to supplemental blood he was getting as well as adjusting his ventilator settings.  It amazes me how dialed in these clinicians are.  They are so good at what they do.
The hospital provided us with a sleep room, right down the hall from Jackson’s room.  I was a little surprised to find it was only a twin bed; I suppose it’s a good thing that Megan likes me.
We woke up and came to see Jackson about 7:00 AM or so, spent just a few minutes and left so the nurses could do shift change.  We went back to sleep for a couple hours and got up and showered then spent a couple hours sitting with our little man.  I started thinking about when I was in Boy Scouts, and we would sit up late at night staring at the campfire.  We would have conversations about why it was so interesting to stare at fire, but none of us could ever come up with a reason.  I have found the same is true with Jackson.  I find I can just sit and stare at him for hours; but for one very good reason- he is mine.  I can’t get over the fact that I have a son.  Every time I think about it, I grin from ear to ear.  How lucky am I that I have a little boy that is such a fighter.  I know Jackson will do marvelous things in his lifetime.  He has already done so much in his short three and a half days.  He carries such a strong spirit with him.  I am continually amazed at how much he is teaching me.
I wasn’t sure how to write about these updates so I’ll just throw them out one line at a time…
  • The Dopamine drip Jackson was on (to help regulate his blood pressure) as of tonight has been turned completely off.  This is a great thing, as it means his body remembers how to regulate it’s self.
  • They were giving Jackson an IV form of Nitroglycerin.  They were giving it to him to help keep his coronary arteries open.  They have completely turned that off as well.
  • The Milirnone (similar to the Dopamine) has been turned way down.
  • He is still on a little bit of Calcium Chloride to help regulate some metabolic processes; so we’ll have to see about what happens with this in the next day or two.
  • Jackson’s chest will likely be closed tomorrow- a great thing!  I really wanted to be able to watch them close it (as they do it at the bedside) and they really didn’t want me there- I asked.
  •  Hopefully in 4 days or so, they will be able to extubate him; meaning pull out the tube that is breathing for him. They have his ventilator set up to allow him to breath on his own when he can.  When he falls asleep or “forgets” to breath, the machine will do it for him.  They are slowly weaning him off of it.
He has been super active today.  We got some really cool pictures of him looking around.  When we came back to see him tonight he was super tired.  He didn’t really open his eyes at all.  I thought it would be a good opportunity to take a few pictures.  There is a small light on the camera that comes on momentarily to allow the lense to focus (it’s not the flash), when it came on he really didn’t like it.  I didn’t know a kid that was only 4 days old could give a look that dirty.  It was the funniest thing.
I have posted a few pictures and a video below with some captions of what has gone on yesterday and today:
Jackson has finally started to open his eyes and look around.  This was tonight about 9:30.
Opening his eyes!

 

Jackson at the peak of his care thus far has had 15 IV pumps with a variety of medications, 3 chest tubes, 2 central lines, 1 central venous pressure catheter, 2 arterial lines, 2 peripheral IV lines, 1 foley catheter, two sets of internal pacing cables, 3 EKG leads, 1 cerebral oxygen monitor, 1 renal oxygen monitor, two temperature sensors, 2 end-tidal CO2 monitors, 1 air temperature monitor, 1 Ballard suction device, 1 endotracheal tube, two parents that love him more than life it’s self and a whole fan club of family and friends back home.
Right before we left him in the capable hands of the surgical team, he finally managed to get one eye open.  Prior to this we weren’t sure there were eyes behind those lids, as he had never opened them.  He gave us a little wink and I was lucky enough to get a picture of it.  Love this little guy.
Megan giving Jackson a little love before they wheeled him off to fix his perfect little broken heart.
He is a trooper!

Posted in Farmer Family, Jackson's Heart Story

Update – Out of Surgery

We just got done speaking with the surgeon.  Jackson did remarkably well during the procedure, until the very end.  He was taken off of the heart/lung machine (bypass) and everything was going great, when his heart started beating in an abnormal rhythm and the surgeon noticed the right side of the heart swelling.  The surgeon massaged his heart in an effort to keep blood flowing in the coronaries, while making preparations to put him back on bypass.  The anesthesiologist administered a drug called epinephrine to get his heart going again.  It did the trick, and he hasn’t had any problems since.

They drew some blood during that episode, and analyzed his hemoglobin and hematocrit.  The hematocrit was very low at about 20, and by calculating how much blood he lost vs. what was put back into the little guy- should have been closer to 35 or 40.  No one was sure what was going on.  They administer drugs to thin Jackson’s blood prior to surgery to keep it from clotting too much; that being said he could be bleeding somewhere else (head, belly, etc).  Everyone’s arms are folded and heads bowed praying that this little episode doesn’t happen again.  They will continue to do some follow up labs to keep an eye on his hematocrit level.

Prior to that episode Dr. Burch (the surgeon) felt confident that he could close the little guy’s chest without any problems.  There was minimal swelling, and he was a pretty big kid.  After the episode he wasn’t 100% sure he wouldn’t have to go in and fix something else; so they have opted to leave the chest cavity open with a big bulky dressing and binder.

He is by no means “out of the woods” but everything else looks great.  His coronary arteries (the arteries that supply blood to the heart) are functioning as intended and he is sustaining himself with a very minimal amount of vasopressors (about half as much than we use on the ambulance with adults); so that is very comforting.

I will try to post again tonight, hopefully with some pictures of us wheeling him off to surgery.  I can’t say thank you enough to all of you who have shown support and love.  We can feel the powers of Heaven and God’s hand in this.

Posted in Farmer Family, Jackson's Heart Story

Surgery Update

Jackson is off of the bypass and his echocardiogram looks great.  We speak with the doctor in about an hour.  He is doing great!

Posted in Farmer Family, Jackson's Heart Story

Surgery Update

They are nearly done with the surgery. Things have gone great thus far, and are ahead of schedule.

Posted in Farmer Family, Jackson's Heart Story

Update – CICU Day #3 (Surgery Day)

Jackson is now in the capable hands of the surgical team.  It was hard to say goodbye; if even for a short several hours.  He managed to open his eyes right before they wheeled him away.  I’ll try to update this as often as we get news.  We love you!

Posted in Farmer Family, Jackson's Heart Story

UPDATE – CICU Day #2

Jackson’s second day in life was pretty dang simple.  He did great throughout the night, and was taken off of the CPAP.  He is on a relatively low amount of oxygen by nasal cannula and is content to sleep most of the day.  Megan and I went over to the cardiac intensive care unit (where he is staying for the time being) and got a bit of a surprise this morning- Megan got to hold her son for the first time.  Words can’t express the emotion in watching a mother hold her son for the first time.  She was grinning from ear to ear.  After about an hour I got to hold him as well.  It was pretty dang cool.
We also got a firm grasp on surgery plans.  The surgery will start at 7:30 AM; and will last about 7 hours or so.  We met the surgeon today, Dr. Burch.  He gave us all the information about the procedure- the risks the benefits, etc.  It was pretty much the same speech we have been getting from doctors for about 4 months now.  He spoke soberly about 5% of babies don’t survive the arterial switch procedure; again a statistic that we have heard more than once recently.  The difference today was, that we are making the bet tomorrow morning.  I was thinking over and over again what I need to do to prepare myself for this.  I couldn’t really think of anything.  I looked over at Megan.  She was holding Jackson.  She still had that incredibly happy grin on her face.  The smile was the wide-eyed optimism that there was nothing in the world that Jackson couldn’t conquer.  I wish I had the faith she does- oh how I look up to that woman.
I had the opportunity to give another gentleman a blessing today.  He is going in for brain surgery tomorrow morning.  In conversation with the man’s mother, I told her that God blesses us in mysterious ways; and sometime we don’t know the “why’s” and “how’s” of the situations we are put in.  I was thinking about that later; and tried to apply the thought in my situation.  God blesses us in mysterious ways.  I don’t understand why Jackson, Megan and I have been asked to endure such a trial; but this I know- God has provided a way for us to endure it.  I can feel the powers of heaven.  The veil is thin and there is a spiritual feeling that Jackson carries; unlike any I have felt.
I will continue to provide updates during and after the surgery by text message and facebook.  Please continue to keep Jackson and Megan in your prayers.  It is helping, and we can feel it.  We love you!
Posted in Farmer Family, Jackson's Heart Story

UPDATE – CICU Day #1

So here is the long version of our events so far.  We got to the hospital at about 8:15 PM Monday night.  They got Megan all checked in and started a drug to soften the membranes, then at about 2:30 AM they started the Pitocin.  We didn’t get much sleep, as Megan’s contractions were consistently 90 seconds apart; the entire night.  She made it look easy…

The epidural worked marginally well until the doctor came in and gave Megan a bolus of medication, and finally got her pain under control.  By 8:30 AM the doctors were there and they were ready to have her push.

At 9:22 AM Jackson Gary Farmer came into this world.  He was super pink!  He was a whopping 8 pounds 8 ounces, being 20 inches long.  We expected him to be a bluish color, so it was a surprise for us both.  I was lucky enough to be able to cut the umbilical cord.  We spent less than ten seconds with the little guy, before they passed him off to the newborn intensive care team.  Megan did so good.  I knew I chose the cream of the crop when we got married, but I fell in love with her all over again today.  I couldn’t have been more proud of her.  The entire OB team was impressed with how diligent she was.  She just kept on going; truly and example to me about perseverance.

Jackson was almost immediately placed on CPAP, a machine used to keep his lungs continuously inflated.  The team also placed a umbilical venous catheter (UVC) as well as an umbilical arterial catheter (UAC).  The UVC is a quick and easy way to administer medications and fluids as they are needed.  The UAC is how they will measure his blood pressure.

The neonatal transport team arrived to take him to Primary Children’s Hospital.  They were kind enough to stop by Megan’s room with the little guy to give us a few minutes- truly one of the Lords tender mercies.  Megan and I were so excited to see him.  He looked so good; pink as could be and ready to take on the world.  I followed him and the transport team over to the cardiac ICU where he will spend a few days; preparing for surgery.  I was fortunate to be able to spend a couple hours with him while the doctors assessed him and the many specialists came by to see him.

He had his first of many echocardiograms today.  He didn’t like it at all.  The nurses say he has an attitude, I told them he got it from Megan.  They also said he’s beautiful (and they clarified that saying it’s not the beautiful that they tell everyone; it’s the real deal).  I told them he got that from Megan too.

Later in the afternoon I took Megan down to see her son without being in a plastic box.  It was a tender moment to watch her make a spiritual connection with Jackson.  Megan has a faith in God’s plan like no one else I know.  She is such a good example to me.  I truly married a great woman.

We spoke to several of the cardiac intensivists who explained to us that Jackson is not keeping up his oxygen saturations like they would want him to.  They have also found that there is a small hole between the right and left atria; known as a atrial septal defect (ASD).  This is allowing him to oxygenate his blood without the use of the Alprostadil (prostaglandins) to keep is ducts open.  They have turned down the Alprostadil and will likely wean him off of it tomorrow.

As of now the tentative surgery date is Thursday mid-morning some time.  They are still not sure if he will need the balloon septostomy procedure; so we’ll find out more about that tomorrow.  For now I am incredibly tired; and Megan is more tired than I am.  I speak for both of us when I say THANK YOU for the enormous outpouring of love and support from family and friends alike.  Our phones have been ringing off the hook today with calls, emails and text messages from concerned people.

We have truly felt God’s hand in our experiences today.  Please continue to keep Megan and Jackson in your prayers.  We love you!

Posted in Farmer Family, Jackson's Heart Story

Jackson is here!

Jackson arrived at 9:22 AM, weighing in at 8 pounds 8 ounces, and 20 inches long.  He’s a big kid!  He is doing as good as expected, we still don’t know a lot, as we have only seen him for about 10 seconds.  More updates to come.  Megan did great, and is recovering well.  We are both very tired- it has been a long couple weeks for the both of us.  Thanks already for your prayers and support.  We love you all!

Posted in Farmer Family, Jackson's Heart Story

Update

UPDATE 6/20/11 – 11:00 PM

Megan is all checked in at the University of Utah hospital. They have started the process and we hope to have Jackson here by sometime tomorrow morning. So far; so good. I’ll keep you posted.


Posted in Farmer Family, Jackson's Heart Story