Jackson’s Heart Story

The summer of 2011 was a summer full of emotion.  Joy and worry all at the same time; as we were blessed to have a little boy come into our lives- a little boy with a congenital heart defect.  Here is our story, from the very beginning…

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  • Great with Child January 24, 2011 Dallen

    So for anyone who is still following this blog we are great with child. Actually Megan is. I don’t know why, but it has always bothered me when people say to me “your pregnant!” I appreciate the sentiment, but let me state clearly, I am not pregnant- nor will I ever be. The laws of nature have ensured that. Tomorrow we have the first ultra sound appointment. I’ve bet the farm on it being a Boy, but something tells all the women in my family that it will be a girl. So we’ll just have to wait and see.

    It has been a whirlwind of events the last year. I managed to put almost 10,000 miles on my car in a matter of days. I moved 4 times, quit a job, got a job and lost a job. I finally got my little gold patch in the mail, after almost 2 years worth of work.

    All in all, I’m very content with life right now. We are knee deep in school, and I’m loving the time that I get to work and learn. I’ll post again tomorrow… probably going to eat crow and say, “it’s a girl!”

  • It’s a Boy! February 5, 2011 Dallen

    It’s a Boy! I can’t explain how excited I am to be having a little boy. I would have been happy with a little girl too- but I always thought we would have a boy first; and we are! I think we have decided on Jackson as a name. What do you think? Not that it matters really, because it’s our kid! And Steph- we stole it fair and square! haha

    Megan had her first ultrasound on January 25th, and it was definitely a boy- it couldn’t have been more obvious. We had quite a circus of people in the room with us. The person doing to ultrasound, an ultrasound student and a nursing student. I was reminded that we are in Rexburg when the ultrasound tech referred to the penis as a “turtle.” I wasn’t sure what she was talking about then it clicked- we are in the Promise Land, so of course we can’t use anatomy words. Even with the silly word games they played, it was a very cool experience to be able to see Jackson for the first time.

    With pleasure comes pain…

    We were mid conversation with the tech about how interesting and rewarding her job must be, when she says “Sometimes we have to give bad…news….” as her voice trails off. She turned her head and looked at me and says “your child has a problem with it’s heart.” I couldn’t believe what I was hearing. It was like a cruel joke. I wasn’t sure what to say or do, so I just sat there and listened. Suddenly the universe and all it’s vastness seemed like it all came crashing down around me. The words of a wise friend came to mind… “you will never know what praying is really like until you pray for your child.” He was absolutely right.

    The woman said she couldn’t be sure what it was but she thought that there was an abnormality with how the veins and arteries connect to the heart. We spoke a little more about it, and then Dr. Lovell came in and spoke some more with us about it. Neither of them were sure that it was what they thought it was, but were confident that there was something not right.

    We got an appointment scheduled with a high risk OB doctor in Salt Lake City. We have been down there and had another ultrasound, with very little information. They are just not sure what is going on. The general consensus as of now is a condition called double outlet right ventricle. We are playing a game of waiting. We have scheduled another special kind of ultrasound at Primary Children’s Medical Center, also in Salt Lake City. That appointment will be in early March. The doctor’s want to wait until Jackson’s heart is a little bigger so it will be easier to get a good look at it

    I am confident that things will turn out for the best. It’s funny that amidst life’s trials, spiritual things that wouldn’t normally stand out, start to become more vivid. I am eternally grateful for my Mom and Dad and Megan’s Mom and Dad, and the rest of my Family. I found out the other day that my two sisters (Steph and Alli) called every english speaking Temple and placed our names on the prayer role. There is power in heaven- and I can feel it.

    I will keep you all posted. Keep little Jackson in your prayers, he will need all the help he can get.

  • Jackson Update March 16, 2011 Dallen

    Sorry it has taken me so long to get around to giving some updates on Jackson. We have been to Primary Children’s Medical Center had an echocardiogram and were able to speak with several fetal cardiologists. The general consensus is that Jackson has transposition of the great arteries (TGA). It’s a relatively common condition among children with congenital heart defects, but still presents some unique challenges for everyone involved. I’ll go into some more detail on this when I get a minute.

    We have a pretty solid game plan that goes something like this:

    1. Megan will for sure be delivering in Salt Lake City at the University Hospital. She will likely be induced about a week or two early.

    2. When the little guy finally arrives, he will be taken immediately to the Cardiac Catheterization lab, where he will undergo a procedure to keep a portion of his heart open. The procedure is called ballon atrial septostomy- for my medical friends. Long story short, they will use a ballon to “pop” a make an otherwise small hole, a little bigger- and allow for oxygenated and unoxygenated blood to mix. Jackson will also be started on a medication called Alprostadil (a trade name for synthetic prostiglandins). The medication has a wide variety of uses, but specifically for Jackson, it will help prevent closure of the ductus arteriosis- another spot in the heart were blood mixes in utero.

    3. The hope is that with these two treatments, Jackson’s blood oxygen saturation will increase enough that he will be well enough to gather some strength for the big switch. He will undergo open heart surgery, going on either ECMO or complete bypass (i’m not really sure how they will do that- I’ll find out for sure). They will switch the arteries and bandage him all up. They’ll leave a couple of chest tubes, a central line and a set of pacing cables (if in the event they are needed) for a couple of days.

    4. This is where it gets a little “iffy”… as the script goes, Jackson will heal up, his heart will recover in a couple of weeks and we will take him home and live happily ever after- we hope. However there are so many unknown variables when it comes to this operation and condition- coupled with the fact that in medicine this is still a relatively new procedure. They have only been doing this for about 20 years or so. That being said, there is no over 20 years old to see what to expect long term.

    Overall these combined procedures have a very high success rate; that being said we are cautiously optimistic, and super super excited. I am so happy that grateful that we have the support system that we have. I’ll continue to blog more about the condition, updates, and things of that nature. Thanks everyone!

  • We know the big day! May 23, 2011 Dallen

    Great news!  At our last appointment at the OB clinic, we decided on a date.  Megan will arrive at the University of Utah hospital at 8:00 PM June 20th, and they will start the labor process shortly after that.  So with any luck Jackson will be born on June 21st!  We are super excited.

    I again apologize for being so slow to update this silly thing.  I never pictured myself as a blogger.  We have since been to the outpatient cardiology clinic at Primary’s several times, and had a total of two fetal echocardiograms.  Fortunately everything is still looking good; or as good as a sick little baby can look.  No new changes to report.  Megan will stay in Utah with our good friends Ashley and Jordan Boyd starting June 1st.  I’ll travel down a few times for doctors appointments and other things.

    I don’t know anyone who would wish this experience on their son or daughter.  It is an unfortunate thing that we have been asked to deal with.  That being said, I am trying to look at the bright side of things.  I have found this whole experience very educational to me.  I am learning things about little hearts that I otherwise would probably never have learned.  Having the job that I do, I hope that one day the knowledge I have gained throughout this whole experience will bless the lives of others; perhaps in their time of need.

    One last thing…  If you would like to be updated on our progress when the actual delivery starts, when the little guy gets here and the results of the surgery, please get me your cell phone number or email address or whatever.  I hope to be able to send out updates as often as we get them.  Jackson has a lot of people praying for him, and I would like to keep you all as updated as you would like.

    Thanks, check back soon for more updates!

  • The Countdown Begins June 1, 2011 Dallen

    As of today, Jackson will be here in 21 days.  Three weeks to the day.  I can’t believe that it’s so close!  Nine months is flying by.  As of Friday, Megan will be staying in Utah with her friend Ashley.  I will be left at home to earn money and watch the Dog.  I think this is really Megan’s way of testing me to ensure that I am still of value and that I can handle life caring for another living creature in a long term setting.  Here’s to hoping I pass.

    I am slowly compiling a list of people who otherwise want to stay informed on our progress once the “magic” starts happening.  If you would like to be informed, please leave your phone number or email address in a comment or email and I will make sure you get the updates.  I am hoping to be able to give updates as often as we have news to give…. Who really knows how often that will be.

    Otherwise, please keep Megan and Jackson in your prayers.  The both of them will need all the help they can get.  Love you guys!

  • Blessed June 17, 2011 Dallen

    Do you ever have moments in life where you feel like you have been blessed with too much?  Moments in life where you feel like God has given you things that could do without?  Moments where you feel like you don’t deserve the life you have?  Today is one of those days.  I don’t know why I have been so “spiritually” connected today.  I have felt closer to God and close to my family, even though they are hundreds of miles away.
    As the countdown to Jackson’s arrival draws to an end, my thoughts are continually focused around him.  It hasn’t been until recently that I’ve had thoughts of worry about our situation.  I wonder how I am going to do it.  I wonder how Megan will do it.  I wonder how the surgeons will do it.  Most of all I wonder how God will do it.
    I think the answers to those questions can be answered by a scripture that is close to my heart; “But behold, I, Nephi, will show unto you that the tender mercies of the Lord are over all those whom he hath chosen, because of their faith, to make them mighty even unto the power of deliverance” (1st Nephi 1:20).
    I am overwhelmed with a feeling of gratitude and love for God, my family and friends.  I am feeling the weight on my shoulders of the impending trial.  I am also feeling an even greater feeling of support on the very ground I walk on. 
    Many are asking what they can do to help.  In simple, pray.  A little prayer, a good thought or just a smile in our direction would be more than I could ask for.
    Love you guys.

  • Update June 20, 2011 Dallen

    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.


  • Jackson is here! June 21, 2011 Dallen

    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!

  • UPDATE – CICU Day #1 June 21, 2011 Dallen
    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!

  • UPDATE – CICU Day #2 June 22, 2011 Dallen
    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!
  • Update – CICU Day #3 (Surgery Day) June 23, 2011 Dallen

    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!

  • Surgery Update June 23, 2011 Dallen

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

  • Surgery Update June 23, 2011 Dallen

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

  • Update – Out of Surgery June 23, 2011 Dallen

    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.

  • Jackson Update – CICU Day 4 June 24, 2011 Dallen
    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!

  • Jackson Update – CICU Day 5 June 25, 2011 Dallen

    They closed Jackson’s chest today!  Woot Woot!

  • Jackson Update – CICU Day 6 June 26, 2011 Dallen
    First, let me apologize for not giving an update for yesterday.  I just wasn’t able to find the time.  Turns out that having a pretty sick little kid in the hospital, is fairly demanding of your time.
    Yesterday was a busy day for little Jackson!  He started his morning off getting a hefty dose of Fentanyl and then getting his little chest all closed up.  I was still a little bummed out that they wouldn’t let me watch; so goes life I guess.  It’s a procedure that they do at the bedside.  The nurse was telling us about how they close off the hallway in front of Jackson’s room, and put up all these huge sterile drapes, and then they don’t let anyone walk by until the procedure is done.  Jackson was pretty groggy after that- which is to be expected.  They started to bring him out of his cloudy state of mind, and tried some spontaneous breathing trials.  They basically turn the ventilator off and see how well he would breath on his own.  Prior to that the ventilator was setup on an assist/control mode; which would allow him to breath on his own when he felt like it, and then the machine would do it for him when he forgot.  He was constantly over breathing the ventilator; which was great!  When they turned it off, so see if he would breath- he just sat there.  He wasn’t going to have anything to do with it.  So the respiratory therapist is working with him to teach him how to breath again.  Megan said she would have a sit down with him and tell him that he needed to breath.  We’ll see which one works better 🙂
    Jackson’s bilirubin level was starting to get a little high (very common for children who start feeding’s late in their life), so they have put him on a bili-blanket and under a bili-light.  These two things help Jackson’s body break down the excess bilirubin in his blood stream.  You can read a little about what bilirubin does in the body here.
    We spent a couple hours with him in the morning and then ran some other errands around town.  We have been lucky enough to procure a room at the Ronald McDonald House.  For those of you who don’t know what that is I’ll take a minute.  They RMH is a large apartment style building that has about 25 rooms for families with kids in the SLC area receiving inpatient or outpatient medical care.  It’s very cheap housing, and they offer occasional meals and things.  It’s been way nice for Megan and I.  We met a couple who is staying in the room next to ours who is from Idaho Falls, and have a cute little boy receiving care at Primary’s as well.  You can read about them here.  Anyhow, the house here as a kitchen facility that is full of food that we can help our selves too, laundry, TV, a small movie library.  I can’t describe the feeling that we get when we come here.  The staff take great pride in this house.  There is almost a sacred feeling here, similar to the one we get at Jackson’s bedside.
    I have been thinking a lot about the Atonement lately.  So often we get into a mind set that the Atonement is only used for remission of sins.  I think that it is used for so much more than that.  It is used for the sinned against, to help them give forgiveness.  It is used by the sinner, to help them get forgiveness.  It is used by Megan and I, to help us understand why our first born son has figuratively been asked to walk to the gates of hell and back.  I can’t describe the many emotions I feel when I think about our little man laying in a hospital bed with his chest wide open.  As I think of Christ and the infinite atonement, I am reminded that there is wisdom and love in all things around us.  There must be a reason why we have all been asked to endure such a trial.  Having to walk the path that we are on helps me to love my son and my wife more and more as the days go by.  I have spoken before of the sacred feeling at Jackson’s bedside.  There is power from above there that none of us can see, but many of us can feel.  The loving arms of our Savior are continually around our son, and I can feel it.
    Stay strong little man, we love you.
  • Jackson Update – CICU Day 7 June 27, 2011 Dallen

    Jackson continues to do well.  This morning the remainder of his chest tubes were disconnected, as well as his foley catheter and two sets of pacing leads.  The only thing left to remove today is his breathing tube.  He is breathing completely on his own (for the most part), but sadly he still “forgets” some times and the machine will be there to breath for him, if he goes longer than 20 seconds without breathing.

    His bilirubin level continues to drop, ever so slowly.  He’s still on the bili-blanket and under the bili-lamp.  I think he doesn’t like either of them, as he has to wear this sleeping mask thing, so the light doesn’t damage his eyes.  When it’s taken off he is constantly looking around and moving his head.

    His medications are almost none now, he is still on a very small dose of Milrinone as well as TPN (IV nutrition).  The TPN is slowly being turned down and his NG tube feedings are being turned up.

    I have read through several past posts, and realized that I should have proof read them.  I’m a horrible speller and an even worse gramar-type-person.

    One quick note about visiting.  We (and the hospital) welcome visitors.  It’s great to have them in the waiting area.  Unfortunately Jackson is still pretty sick, and very susceptible to germs and infection.  Please do not just show up to the hospital or let yourself into the Intensive Care Unit without speaking with Megan or I before hand.  You will not be able to see our little man in person, but we have a pretty nifty little system of Skype and FaceTime, so you can see him via the internet.

    If you have any questions about visiting, give me a call- I’d be happy to talk to you about it; (208)339-6401.

    Thanks folks!

    Also, here is a video of him looking around last night:


  • Jackson Update – CICU Day 8, 9 and 10 June 30, 2011 Dallen
    So much has changed with Jackson recently!  I again apologize for my laziness in getting the blog updated.
    Monday night was a little rough for our boy.  His Fentanyl drip was turned completely off (the medication that was keeping him sedated and preventing him from gagging on the tubes in the back of his throat).  He really didn’t like the bili-mask that was over his eyes all the time.  I’m amazed at how much he likes to look around.  Anyhow, a combination of being blinded and gagging on the ET tube was a little to much for him to handle.  He would try to cry, but since he has a big plastic tube down his trachea it would just over-breath the ventilator and his CO2 would get really low.  It was pretty tough to sit and watch him deal with that.  The resident PICU doctor that was on was kind of retarded.  She didn’t understand why I thought it would be good to sedate him or pull the tube like was originally planned.  Needless to say, I was very frustrated with her.  I gave our little guy a blessing and Megan and I went home pretty sad and depressed.
    The next morning we got to the hospital and found out that they ended up sedating him, by the order of the attending physician.  Sometimes I think doctors are too smart for their own good.  In this case, I think the doctor forgot there was a sick miserable little boy behind all those tubes and wires.  From there on out it has been pretty smooth sailing.  The PICU fellow (a better doctor than a resident) that came on Tuesday morning was awesome.  Both Megan and I have really enjoyed her.
    On Tuesday Jackson was extubated (his breathing tube was removed).  He still had a few periods of apnea where his oxygen saturations would dip a little lower than anyone would like.  The nurses said that everyone was a little perplexed on how to fix it, so their solution was to put him back on the nasal cannula at a very high flow rate (7 lpm).  That is super high for an adult, let alone a little baby.  The thought was that it would keep him awake  He had enough oxygen running though his nose that when he opened his mouth a little breeze would flow out.  His little nostrils would flare when he closed his mouth.  It was pretty funny.
    He did okay with that throughout the day on Tuesday, and early Wednesday morning the Milrinone was completely turned off, and his oxygen was turned down to a normal flow rate.
    Throughout the night on Monday and Tuesday night Jackson occasionally would go into a weird heart rhythm.  Basically when the heart get’s irritated because of an oxygen or an electrolyte deficiency the heart beats in a weird erratic fashion called pre-ventricular contractions and/or pre-atrial contractions.  They did some chemistry tests and found that the electrolytes in his blood stream were a little “off” so they got that squared away and the heart beating normally again.
    On Wednesday afternoon our little man was transferred to a step down unit on the third floor.  He’s still on continuous cardiac monitoring; but he is without arterial lines or chest tubes of any variety.  He still has a peripheral IV saline lock in his foot, but that should come out in the next day or two.  He’s a pretty happy camper.
    As of today he’s still on tube feedings via the NG tube, but he is handling those like a champ.  He is still on a very small amount of oxygen by nasal cannula; like 0.12 lpm.  I didn’t even know oxygen went in that small of an increment.  Turns out it really helps him though.  They have been trying to ween him off of it by bumping it down to 0.06 lpm; but he de-saturates very quickly.  He may go home on oxygen and the NG tube.  The plan now is getting him home on Sunday!  That would be flippin’ sweet!
    Both Megan and I are very tired of being away from home.  I haven’t seen Rexburg in almost 4 weeks; and neither has Megan.  My Dad and I have a good sized renovation project to work on at the house we are renting.  I would really like to get started on that.
    One last little thought…
    I speak for both Megan and myself when I say thank you.  Thank you to everyone who has thought and prayed and smiled for our little Jackson.  I can’t begin to express the gratitude and happiness I feel when I think of the hundreds of people who have called, emailed, texted, visited and written us with concern for our situation.  It hasn’t been easy by any stretch of the truth; but our family and friends have made it bearable.  Thank you so much; we love you!
    Some pictures of our journey the last few days…
    First time being held after surgery.  Megan was super happy.
    Jackson, this morning.  Pretty happy guy.
    Me and my little man
    Megan and Jackson
    I saw this in target, and thought “yeah, a week after your arterial switch.”
  • Ten Lessons Learned – Jackson is home! August 4, 2011 Dallen

    Well six weeks have passed since Jackson was born. He had major open heart surgery and is now a healthy happy little boy. Jackson has since seen a cardiologist and the doctors continue to be impressed with his remarkable progress. It’s a rare moment that Jackson doesn’t leave those around him in awe.

    I wanted to share just a few lessons I learned from our time in Salt Lake City at Primary Children’s Medical Center.

    Lesson #1 – Megan is tough as nails. That woman is without a doubt the salt of the earth. Whenever I think about it, I am just awed and amazed that someone so sweet as her would want to spend the rest of eternity with someone as mediocre as me. She endured, with a smile on her face, things that would make a lesser woman cry at her knees. She is truly the glue that holds our little family together. I love her dearly.

    Lesson #2 – Primary Children’s Medical center is one of the coolest places on earth. The staff there are without a doubt some of the most talented clinicians I have ever had the privilege of meeting. We would never take our son anywhere else. They are amazing!

    Lesson #3 – There is power in prayer. Countless times Megan and I knelt in the solitude of our tiny room at the Ronald McDonald House or stood at Jackson’s bedside and offered gratitude and then pleaded with the Lord to lift our burdens and to heal our son. Steve Holley said it best when he said “you don’t know what it means to pray, until you have prayed over a sick child.” That certainly rang true more than once. There were some experiences that are just too sacred to share. Suffice it to say, that prayer is real; and our prayers were answered.

    Lesson #4 – I have the best family and friends anyone could ask for. In our short few weeks in Salt Lake City, we received hundreds of text messages, phone calls, emails, facebook messages, and letters- all with a genuine love and concern for our families’ situation. I can’t say this enough and with enough sincerity; THANK YOU! We could not have endured this trial with such faith without the support of those we love.

    Lesson #5 – The priesthood is very real. Having the faith that I do, I believe solemnly that there is great power in the authority to act in the name of God. Several minutes before Jackson was taken to surgery, I had the opportunity to lay my hands on his head and call upon the powers of heaven to lay watch over my first born son. I can’t describe the feelings and impressions that came to my mind as I could feel the very hands of heaven rest upon my shoulders. I knew that God and heaven would be watching closely over Jackson during the biggest trial of his short little life.

    Lesson #6 – What it means to love a child. Now, having only been a parent for a little over 6 weeks now, some would say that I really have no idea exactly what it means to love a child. I would say to that: I have a pretty good idea. I don’t know how it’s works, but as soon as I saw sweet Jackson’s face, I loved him. In an instant, I loved Megan more and I loved God more. As Megan and I would return to the hospital day after day so spend time with our little man, we would grow closer and closer to him. I wouldn’t wish this experience on anyone, certainly not a child. However, I would hope that when others are called to bear the burden that we were- that they would find a similar love for their child that we did.

    Lesson #7 – The Lords timeline is not my own. The night Megan and I arrived at the University of Utah medical center to start Megan’s labor was July 20th. We had eaten a big dinner at Tecanos with my family and Megan’s family, as well as some aunts and uncles and close friends who were in the area. We arrived at about 8:30 at night. The stress I was feeling was unlike any other I have endured. I felt this pit in my stomach that I couldn’t get to go away. They started the Pitocin several hours after we got there, and Megan started to hurt. It was so hard for me to sit by her side and watch her grimace in pain and not be able to do anything about it. I kept praying in my heart for things to move faster, growing frustrated that they weren’t. Jackson was born and I changed the tune to my guitar. Now I wanted things to go slower. I kept asking myself rhetorical questions like.. Why did they have to whisk him off so fast? Why couldn’t time move a little slower? Many, many questions, so very little answers. There were countless times when I begged and pleaded with God to adjust time. One afternoon while sitting at Jackson’s bedside, I had the thought come to mind, that my timeline is not God’s timeline. What a novel idea. In a matter of seconds I realized that God has his own schedule, and it’s because of His wise and loving reasons that we endure the trials we do, in the very instant we encounter them.

    Lesson #8 – Christ walks with hurt little children. Spending any amount of time in the Intensive Care Unit at a children’s hospital will humble a person pretty quick. We saw so many sick little kids, that had life every bit as tough and often times worse than Jackson. At night when it was quite, away from all the hustle and bustle of people coming and going, it reminded me of the temple. The spirit can be felt so strong. Christ and the infinite atonement walk those halls. When looking through my “spiritual” eyes I could see angels take the hands of those little kids in their darkest hour. Which brings me to my next lesson…

    Lesson #9 – Christ holds a special place in his heart for the little ones. While we were at the hospital, there was another child brought in because he had been found in the bottom of a muddy lake. The nurses said that they were literally suctioning mud out of the poor little boy’s lungs. In the prime of his life, the time that he is supposed to be running around with his friends and family- the little guy gave the best gift anyone could give, the gift of life to several other children. There are but a few things in life that are similar in nature to the Atonement, pediatric organ donation being one of them. The heart ache and grief that the little boy’s family endured was gut wrenching. To watch them say goodbye to their little boy was almost more than any one person could handle. As I would sit and stare at my son and other people’s children, I couldn’t help but think that there is a very special place in the Saviors heart for children.

    Lesson #10 – I learned that the Atonement, Christ’s ultimate gift of love, applies in more ways than I ever thought possible. When Jackson’s surgeon spoke to Megan and I immediately after the surgery, he was fairly concerned about a period in which Jackson’s heart stopped pumping blood. There was a distinct sense of concern in his voice as he shared with us the details. He couldn’t offer a reason as to why the event happened, but said the only thing to do would be to watch him. Shortly thereafter is when they had all the problems with Jackson’s arterial lines and getting his blood pressure in a normal range. The 24 hours after that were undoubtedly the most stressful of my life. The only thing I could think about was the Atonement. I kept thinking about how much Christ must love me for him to be able to endure these same feelings when he offered himself for the sins and pains and sickness of all those who would ever live. How could he love me so much? How? I can’t begin to understand even the smallest part of it. The Atonement is real. It is all around us. In the very darkest hour of our lives, Christ is there- standing on the sidelines of heaven; helping us endure. I testify that God loves us. There is power in the Priesthood, and the atonement is real.

 

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