The James Journey: Day 5

There are so many things I could write about today, so I figured the easiest way was to run through the surgery timeline.  I will have to add pictures later as the hour is late...some of the pictures can be a little overwhelming, so I'll attach most of them at the very bottom when I do add them. 

• 8:45am  I got the kids off to school and childcare before heading to the hospital. I found myself getting somewhat frustrated at the line of cars holding me back from getting to see my little guy before surgery.  When I finally saw the accident site, I realized multiple people probably got hurt, based on the severity of the crash.  I then found myself saddened at my reaction as I realized families were now dealing with the same despair we have been dealing with: have a loved one in the hospital, in a potentially life threatening situation.  I resolved to not be so quick to judge and be more compassionate next time.  I hope everyone is okay.

• 9:30am  I got to hospital and found James wrapped up like a little bean in his blankets!  Jared said he had a tough night with the many pre-op procedures and by the time morning rolled around, he was pretty pooped out!  I immediately requested to hold him and our fantastic nurse Jennifer got him settled in my arms.  All morning, I had stayed pretty calm, however I could feel the desparation to keep James safe rising as I held him in my arms.  I know the way to do that is to proceed with surgery.  I also know the Lord will keep him safe and protected....so many prayers have gone out on James' behalf.  Now is the time to trust in those prayers and in the Lord's will.


• 10:15am  The Anestesiologist, Dr. Ngyuen, came in to talk with us.  In Jared's words, he gave us the true "gloom and doom" speech-he walked through the procedure step by step and gave us every risk and potential complication possible.  It was a bit intimidating to be perfectly honest, however Jared and I both felt calm about the procedure and the decisions that had been made.  We definitely were feeling the nerves rising, but we both knew it would be okay. 

• 11:00am  The OR nurse came to pick James up at 11:00 on the button.  The time had flown by so quickly, I was surprised it was already upon us.  I had a hard time handing James over to our room nurse.  My mind was all of the sudden flooded with thoughts of "this is too fast, don't take my baby, how do I know you will bring him back, STOP!" I wasn't certain if I was ready for this....and then I wondered if anyone is ever ready for this moment.  Jared and I walked down to the OR with the OR nurse and our room nurse, holding hands and silently comforting each other as we prepared to part with James.  As we were waiting for the elevator, James smiled at me two times.  I couldn't help but think that was a sign that everything would be okay-as if he was sending me a sign that he could handle this just fine.  The hardest moment came when we hit that stop point and were asked to give James a hug and a kiss goodbye.  Those thought in my head suddently turned into pleading cries to give me just 10 more minutes holding him....what if he didn't make it through surgery?  I finally allowed myself to think it fully and couldn't contain the tears (not that I had been trying).  My heart was full as both Jared and I gave James those final hugs, kisses, and whispers of "I love you, come back to us".  We headed back to the elevator, and I didn't turn to look back because I was nearly positive I would want to return to James' side.  This was such a hard moment and one that required both Jared and the Lord to endure.
• 12:30pm  We got our first update that Dr. Nigro had already made the incision and was about to go through the sternum to begin working on James' heart.  Everything was going fine at this point, and we were relieved to get a positive update. 
• 1:00pm  We didn't get back from lunch until 2:00, however, our nurse gave us the second and third updates that happened while we were on our lunch break:  James was put on full bypass at 1:00 and Dr. Nigro began actually repairing the heart at 1:30pm.  Once again everything was going well and James was handling bypass perfectly.  We were surprised how quickly things were moving....was the day moving faster or was Dr. Nigro that good?  We weren't sure but we were once again grateful to know things were positive and hopeful still.  At this point, we also found ourselves being super grateful for the steady stream of visitors.  Between my family and Jared's family, we felt time slipping by quickly and our nerves were diminished through the support of others.  We are truly grateful for that simple service that was provided for us throughout the day.
• 3:00pm  I think this next update shocked us all:  James was off of bypass and his heart was beating on its own.  !!!!!!!!!!!!!!!!!!!!!!!!!!!  I personally was NOT expecting this news so quickly!  Once again we felt so blessed to hear that there were zero complications involved and that James was doing wonderfully!  The time began to slip away even quicker as we started to anticipate the end of the procedure our the return of James to our room. 

During the downtime, we decorated our corner of the room with all the get-better cards from Cousins and Siblings!

• 4:15pm  Our nurse brought us the good news that James was all sewn up to the skin and just about ready to come back to the room for recovery.  We prepared ourselves to head to the family waiting room, and the hospital staff would need the space and room to get James set up and attached to all the appropriate machines.  Sure enough, 20 minutes later we saw James' bed rolling down the hall. We got to peak into it we once again, we were all shocked to see he looked completely normal!  We had prepared ourselves to see a lot of swelling, but there didn't appear to be any. Tears once again flooded my eyes and I felt in that very moment that James completely returned to me to stay.  From that point on, I had to start telling myself to not jump to conclusions.  We still have a long road to go, and although things went beautifully during surgery, I can't let myself get too excited-hopeful, yet.  Always.  Bumps in the road-definite possibility that we need to be prepared for.
• 5:30pm  We were able to return to the room about an hour after we left it-a little longer than we though, but worth the wait.  James was in his bed hooked up to a bazillion tubes and machines.  He had the ventilator breathing for him.  He had tubes taped into his mouth and nose.  His chest was marked with the bandage that covered his incision.  But despite all these additions he looked like my James.  He looked like the baby I sent down the hall that morning-my sweet angel baby, returned with a better heart.  Tears once again as I silently thanked the Lord for my son and his presence in my life-a presence that I can feel changing myself and changing our family.

Once James was settled, we got to stroke his hands and legs, rub his cheeks, and comb through his soft hair.  We watched the ventilator breathe for him and the pacers help his heart keep a steady rhythmn.  The many tubes in his body were helping moderate the minimal drainage and bleeding from his heart and his lungs.  He is being given multiple meds to stabalize his blood pressure, his pain levels, and his breathing.  His blood pressure has been a bit variable, but that was to be expected.  The nurses simply stabalize it with meds and then watch to see if James can maintain it.  At 10:00, James actually started to wake up.  I saw his eyes peeping a few times, he moved his arms, and his little mouth kept rooting around for food.  By 11:00pm, the nurse took James off the pacemaker and he maintained a perfect heart rhythmn on his own-it was a great moment to realize this key organ is working wonderfully.  All in all, James is a fighter, and he is battling to win.  Everyone keeps saying how well he is doing, how beautifully he is recovering.  I am just grateful he is here with us.  Again, I have to keep reminding myself that we have a long road ahead of us.  However, it is a road I willingly travel.

During dinner this evening, Jared and I talked about how to move forward.  We recommitted to trusting in the Lord with all our heart in all things.  We voiced our testimonies that once again, the Lord is in complete control, and that thought has to rule everything else-fears, worries, happinesses, triumphs, and pains.  We are so grateful that in our case, it is happinesses.  However, we know we mus be just as willing to trust the LOrd in moments of ultimate pain, as that is what he requires in order to bring about blessings and ultimate peace.  We have a long way to go as children of God, working through life to prove ourselves.  We will continue to learn from our beautiful son and all our children how to do that with testimonies intact. 

Moving forward with hope and gratitude in our hearts.  It has been a good day.

The James Journey: Day 4

Today I was supposed to be induced.  Instead, we are preparing our hearts and minds for major surgery.

James has had a great day today-maybe his best yet.  His levels have all been fantastic, his temperment has been calm, and best of all, I got to hold him for over 3 hours!  I can't decide which of these things is my favorite, but my heart definitely prefers holding my little baby.  If it were up to me, I would hold James all day.  He get so calm and relaxed in my arms...and sometimes I can barely tell anything is wrong.  If I close my eyes, I can almost picture us in that same position at home, in my glider, with zero cares in the world.  When those thoughts and wishes start to overwhelm, I remind myself-we will get there.

Jared and I have been pondering lots of questions today, some of them involving very difficult conversations.  We have been focusing so much on positive thinking and building hope rather than worrying about potential problems.  We subconsciously dance around the D word...rarely saying it, rarely thinking it.  When my kids bring it up, I find myself immediately emotional and uncertain about my reply.  JD asked me tonite, as I was putting the kids to bed:  "If the doctors don't fix James heart, will he die?"  What to say to a 5 year old who asks the very question I won't let myself even think? 

As difficult as it was, Jared and I had that conversation today.  It is very easy to share our testimonies with each other, that we know the Lord has a plan for James and it trumps the skill of the surgeon, the will of the parents, and the strength of his heart.  We know that the Lord may only need James here for a short time...or he might need James here for a long time.  We also know that regardless of how things work out, James is part of our eternal family, and that testimony drives our faith, especially now. We believe these things with all our hearts and we trust the Lord knows us and James, and he will provide for us.  This is our testimony, and we say it easily and with complete certainty.  What might not be so easy is if this very testimony is tested in the most extreme way possible and we must rise the very essence of our beliefs.  It is hard to know how to prepare for this, hard to make a plan for working through something like the death of a child-and I can promise you it is not what I wanted to focus on the day before surgery!  However, it was a conversation we needed to have and we honestly came to no conclusions, other than whatever happens, our family sticks together and if all else fails, we never forget that testimony that HAS to pull us through.  For now, we just have faith that the Lord will allow that to happen.

Another conversation Jared and I had was centered around the following question:  What are we supposed to learn from this trial?  I am sure there are many many answers to this question, but we both think one of the answers is centered around service.  Not just serving others-compassionate service, that of which requires no reward, no accalaides, no notice of any sort.  It is the kind that Christ would offer if he was here.  We have been so overwhelmed and humbled by the people who have demonstrated Christ-like service to us over the last week.  People who offer their homes, their time, their resources, their support, their prayers-and they don't need anything in return.  They server without thought, and without guidelines-they just want to help where they see a need.  I have had beloved friends and family tell me, "You tell me what you need and I'll do it".  It has brought tears to my eyes every time.  Others have jumped in without question or comment, they just see a need and they fill in.  My heart is full with gratitude as I realize how much that helps.  Others have given me a hug, promised to say a prayer, or resolved to send positive thoughts or feelings in whatever manner their personal beliefs allow.  Just overwhelming, to the point where I cannot help but dissolve into tears at the thought. 

I am not certain people know or realize how much the service of others buoys you up until you are in a moment of desparate crisis.  In that moment, despair is suddenly lifted as service overwhelms:  people come by to clean the house, give their children the primary lesson they missed on Sunday, pay for a gallon of gas, take the kids for the day, teach their boys how to make Santa beards with soap bubbles, sweep a floor, cry with you, give you a hug, or promise to pray and fast for your baby.  I didn't know until we found out James was in a moment of crisis-I didn't know how service truly lifts the burden.  We feel so blessed and so determined to be those kind of people, those who quietly see a need and fill it, no questions asked, even waving away the thank yous that are bound to follow-simply claiming it was their privilege to help. Amidst all the things we know we will learn throughout this James Journey, we are learning what it means to serve and we are resolving to be more like Christ in this area.

Tomorrow we embark on a changing day for James.  It is the day James' heart will begin its road to recovery.  James is such a strong little boy, he is so calm and content....his spirit seems to understand that the road will be difficult and he is ready to accept the challenge.  Everytime he stares at me with his little eyes, I can't help but think he is aware of what's happening-and he is okay with it because he knows the Lord is on his side, and he knows Jared and I, and Karianna, JD, Jordan, and Sara, are just waiting to smother him with hugs and kisses when he comes home.  The day is coming and tomorrow simply starts the countdown.  Our hearts are full.

The James Journey: Day 3

I am working on a Day 2 post, but its a work in progress as yesterday was an emotional day (the good kind). 

Today was probably James' best day in terms of stability.  All of his levels and numbers were normal and never veered from that.  He was much calmer today, having been on his nutrition IVs for a full day.  I don't think he is content with not physically eating, but I do think his body is more satisfied-thank heavens.  I understand why he can't eat before surgery.  The doctors want him to avoid bowel issues before surgery, and eating might change his blood flow needs.  However, I can't help but wonder if this is the best condition for him to be entering a very serious surgery.  Thus, I am glad to see the IVs helping his demeanor so much-it must be doing the same for his overall health.

James' bilirubin levels are now back to normal as well, so no need for phototherapy.  He had an EKG today that was the beginning of operation prep work.  He'll have another one tomorrow actually-the doctors needed another set of info apparently on specific elements of the EKG.  I started stringing together James' beads of courage today.  Its a program the hospital uses to celebrate each major hurdle in this experience for James.  I love it because it keeps things so positive and hopeful, and that's been huge lately.  Each bead represents something James has done here at PCH:  tests, IVs, surgeries, ambulence rides.  My favorite bead is the anchor bead.  It came with a little note that talks about how family, friends, and the hospital staff are the "anchors" in James' journey, and that the support that comes from those people is key to his success and recovery...the love and compassion that comes from those people build the anchor from which James will draw his strength.  What a perfect sentiment for the support we have felt from our family, friends, co-workers, hospital staff, and perfect strangers! 

Jared came to visit today with all the kids.  We definitely wanted them to see James before surgery and since RSV restrictions are starting, we needed to bring them today.  We knew they couldn't be here long, given how many cords and machines are in use around James bed!  However, we also knew we wanted the kids to connect with James before surgery.  The kids just love James! Karianna and JD really wanted to hold him but understood that wasn't possible.  They were content to stand on a stool and protectively guard James in his little bed.  Both Jordan and Sara stared at James, and it seemed they were surprised he was still around!  Sara kept pointing at James and saying "That baby jane?"  I kept telling her yes, and she would giggle and say "Oh!" before trying to touch every body part of his!  Jordan understands the situation more perfectly and simply than anyone.  He will explain that James' heart is broken and the doctors are fixing it so it doesn't die.  It makes me tear up to hear him say that because of the simple truth in his words.  BUt every prayer we say is focused on trusting the Lord and thanking him for making James an eternal part of our family.  He is such a fighter and his spirit is strong.

James also got some friends to hang out with today!  Pro Flowers came to the hospital and gave him a bear that was donated.  The doners who dropped it off were so wonderful-taking a few minutes to talk with me and get to know James and his situation. Even though James is so young and won't recognize this as a toy, the spirit it brought to the room was amazing. Later on in the day, more volunteers came in to donate a second teddy bear.  This one came with a doner card that specifically said who donated it.  Thank you to the Healy family, whereever you are.  Your donation touched my heart and reminded me that the love of strangers speaks volumes.  I call the teddy bears James' "Guardian Bears"!

Overall a great day!  I got to hold James for quite some time today and relished the chance to hold him close to my heart, stroke his skin, and remind him that this trial will pass and he was forever safe in my arms.  I had a few hard moments tonite as I considered he will be having major surgery in one day.  I wasn't necessarily trying to extend that frightening thought, and I wasn't trying to make it frightenining.  But I couldn't help tracing a line over his little chest and feeling his tiny heart beating under his rib cage....and wondering at how James will endure surgery.  It was hard for me to imagine his otherwise perfect body needing to be cut open.  You wouldn't know just looking at him that anything was even remotely wrong with his heart!  A very selfish part of me wants to just take him home and pretend this isn't happening.  But it is, and for now, I have to trust that the Lord is in control and has provided us with amazing doctors and resources to fix this problem and complete his journey on earth.  It doesn't mean though that my spirit doesn't cry for my little boy.  If I could do this for him, I would in a heartbeat. 

We move forward into his last day pre surgery tomorrow.  I plan to hold James a ton during the day, whisper words of love and peace to him at every moment possible, and utter prayers in every free moment...of course, there will always be a prayer in my heart as well. 

The James Journey: Day 2

Day one is over, and I have to admit, I am grateful for that small fact.  Day two means we are moving forward on the road to recovery, and I see that as a positive!  

 The best part of today was getting to hold James.  I thought it would not be allowed very frequently at all, that his issues were so severe that he would need to stay in bed pretty much all day.  So I was surprised when our nurse today asked me if I wanted to hold him.  I jumped at the chance and couldn't help but cry as I drew James close to my chest, tubes and all.  All I have wanted to do thus far is keep him safe, as I had done for the previous 9 months....it felt so amazing to snuggle him close to me.  I wanted him to feel my heartbeat and know that I was close and watching over him, in whatever way possible.  I felt as if he breathed easier in my arms.  This moment was such a peaceful one for me, in the midst of the shock I still felt from being in this situation period.  It reminded me and Jared that James is ours regardless of how things go.  The Lord has blessed us so very much in bringing James to our family. 

 Overall, James had a good day-his levels, blood pressures, etc are staying fairly level.  It looks like his PDA duct is still closed, so the doctors increased his prostoglandin levels again to make sure that duct opens.  James seems to be getting somewhat uncomfortable not eating anything, but it is necessary to hold him off food unless he needs to go into surgery asap.  It looks like he will not have surgery until closer to the end of the week.  This is a good thing and a bad thing-good because it means he is not in an emergency situation....bad because I want to get things started (as scary as that is) so he can get closer to coming home. 
 

 Talking to Dr. Garn always makes us feel calmer. Dr. Garn is the cardiologist on the case and LDS. You can see the spirit this brings to our conversations and it makes me feel so much better. After doing an echocardiogram today, Dr. Garn let us know he believes there are a few changes he will be making to the surgical procedures.  First of all, the aorta now appears to not only have a narrowing in a singular spot, but the entire aortic arch appears to be more narrow in general. This means the entire arch will need to be repaired-basically, widened.  In addition, the ASD (hold) between the two atriums is larger than we originally thought.  Because of these two issues, the surgeon will most likely be going through the front of the chest instead of the side.  This means James will go on full bypass.  This was a little bit of a scary thought for me and Jared honestly...however, given the circumstances Dr. Garn described, I feel he is making the best call.  We have to trust that of course, and both Jared and I feel a good spirit about this decision, if it becomes reality (this is up to the surgeon).  We hope to meet with the surgeon, Dr. Nigro, tomorrow.  Everyone at the hospital speaks so highly of Dr. Nigro, including friends/family who have heard of him.  This is also a comforting thought when it comes to James' heart.  We can see little moment like this where the Lord's hand is clearly visible and we are hopeful with each little mercy that is left in our hospital room.

 Both Jared and I really found ourselves overwhelmed today at the amount of service that is being provided on our behalf.  I posted a notice on facebook about what James is going through and within hours I had 44 comments from friends, families, and people I barely know.  Everyone was expressing their well wishes and their resolve to say a prayer for James.  Throughout the day, I saw those same people posting information on their walls about James asking their friends and families to offer a prayer for James, and it amazed me to see how far reaching a simple prayer request can be.  All day we heard of the small things that were being done for our family to help in this situation-offers for childcare, meals, housecleaning grocery pick up and more.  I just felt the outpouring of love deep in my heart, more than those individuals probably knew.  I have always tried to serve when needed, but I am not sure I have ever understood the effect it can have when it is you being served in a dire moment.  Both Jared and I feel so very blessed and humbled.

 Another blessing we have received has come from the hospital staff.  We have felt so well cared for at Phoenix Children's Hospital.  Each and every single person we come into contact with has demonstrated genuine compassion for our situation and for our son. They have answered questions, taken personal interest, and inquired about our needs while providing the best of care for James.  We felt so confused and overwhelmed at Shea, and granted, things were happening so fast that this probably was to be expected....not to mention the fact that we were in shock.  However, we feel such a calming atmosphere throughout PCH, and it is because the staff here are so well trained at taking care of families-medical needs and otherwise.  We know James is being taken care of, and we are so grateful for that.  One of our nurses, Olga, kindly gave James his first friends at PCH:  a bear and her personal choice for him, a kangaroo with a little Joey peeking out of the pouch.  So kind!  In addition, the child psychologist came down to visit James and made some black and white stimulation mobiles for him.  James hasn't done too much with those, but I am sure he will at some point.

Overall, the day has been trying as we try to wrap our minds around the situation as a whole and prepare ourselves for a major surgery that will come at the end of the week.  We know the Lord is in control and we see his hand calming our worries frequently.  We hope to have many of our questions answered in the next day or two and we hope to move forward in this recovery process so James can come home to us.

Day One Addendum

Today is actually March 26th.  I realized while looking back at my blog that I never really included the details as to how James was diagnosed with 3 congenital heart defects and those moments before we were transferred to PCH to prepare for open heart surgery.  At the time, I think my heart and feelings were way too sensitive and tender to relieve that experience.  I would however like to record this for journaling purpose, and so James can one day know how his journey began.  This will be hard for me to write....I am in a good place now, but preparing for James 2nd open hear surgery, and emotions are still tender as I consider how similar or non-similar this second experience will be to the first.  My goal is to see how much better things will be this time, especially based on what we learned the first time around.  We love James regardless-I can deal with all the hardships and emotions that come with congenital heart defects, as long as we get to keep James-which we intend to do forever. 

It began on December 10th officially.  The pediatrician on call was doing her standard check ups and discovered a light heart murmer.  Nothing to be terribly concerned about-this is somewhat normal for newborns and generally rectifies on its own.  On December 11th, the pediatrician was clearing James for discharge at noon-I was packing my bags, prepping the bathroom to take a shower before discharge, expecting everything to go as planned.  The pediatrician said she was still hearing the murmer and just to be safe, wanted to do an ultrasound to make sure everything was okay.  That was a bit of a red flag to me, but she sounded so calm-like it was a run of the mill thing to protect the hospital from any liabilities if something did end up being wrong.  They came and took James for his ultrasound at 12:30; I continued packing, laid out shampoo and soap in the shower, and started to eat lunch until James returned.  I was looking forward to going home and bonding with James in the comfort of my own home.

The pediatrician returned to my room around 1:00pm.  James was not with her.  I thought at the time he was probably on his way down, perhaps the nurse was just re-swaddling him before bringing him back. I thought maybe the doctor just wants to consult with me-tell me everything is fine-before she heads to her own lunch break.  She sat down next to my bed and had a piece of paper and a pen in her hands.  That was my red flag.  She started off slowly, telling me she found a problem on James' ultrasound.  I stared at her as she began to describe the hole in his heart and the narrow portion of his aorta.  It struck me that she was so young, probably younger than me.  She drew a picture for me to illustrate the 2 problems she thought she was seeing.  She wasn't uncertain-she was sure of what she was talking about.  Her voice trembled though, and I found msyelf thinking, she probably doesn't like this part of her job-telling parents there was a problem with their perfectly formed newborn.

I kept waiting for her to say "....so we'll just watch this for the next few weeks, make sure to have your own pediatrician monitor it, if it gets worse we'll prescribe an antibiotic to take care of the problem." That's all my experience has told me to expect.  At some point, the pediatrician paused and said to me, "Its okay to cry."  thats when I realized I already was crying while pondering how young she looked-as if a part of me realized what was happening, and another part was refusing to acknowledge that something was seriously wrong with James.  That second part jumped up to speed at that moment and I understood:  James' heart is going to struggle to keep him alive unless we intervene.  I immediately asked "Where is he?"  I repeated it over and over, and the crying was getting worse.  My thoughts were all of the sudden in a complete disarray except for the need to go get James. 

Moments later my nurses came in and started throwing everything into my bag.  Somewhere the pediatrician told me James had been rushed to the NICU in the hospital and they were preparing him to be transported to PCH.  I zoned out, grabbed my phone and walked out my door before realizing I had no idea where the NICU was.  My nurses tried to get me to sit in a wheelchair.  I declined, picked up my duffle bag that they had thrown together and asked if we could just go to the NICU now.  I don't remember much about that walk except calling Jared at some point.  I told him something was wrong with James' heart and he needed to get to the hospital right away.  Beyond that, I was just a mess of tears.  We got to the small NICU and I hesitated.  I didn't know what to expect-would James already be covered in tubes? Would be he be asleep?  Would he all of the sudden look sickly and on the verge of unconsciousness?  I tried to get ahold of myself as I walked in, only to see James laying on the bed wide awake, staring up at the bed warmer as the nurses decided which hand to put an IV in.  He looked so normal-I couldn't conceive that his heart was anything but.  I found myself frantically wishing I could go back to being pregnant.  He was safe in my womb, right?  I could keep him safe, must more easily than tubes, bright lights, doctors, surgeons, surgical instruments....it was all I could do to not rush over to his side, pick him up, and carry him out of the hospital. 

Those were hard moments.  Jared wasn't there yet and I was in a mental panic.  The nurses didn't want to talk to me much at all-they were caught up determining how to get a good line in him, how much meds to put him on, if they should try to do an umbilical line, etc.  One nurse in particular seemed like a know-it-all....she kept trying to redirect the other nurses, they kept disagreeing on things.  A part of my mind kept making mental notes about this, but I couldn't stop staring at James and holding his hand.  His skin felt too warm to me and I considered asking them to turn down the bed warmer.  Every few minutes I would tear up all over again and fail to contain my emotions.  I couldn't fathom how moments ago, I was holding James in my arms with no worries in the world-and now he was laying in the middle of a medical emergency.  I was scared to death that he was going to die right there.  That thought didn't seem to mesh with the image of a healthy baby that I had delivered two days earlier...my mind was utterly confused and in complete despair.  Someone handed me a box of tissues and it was at that moment that I realized it interrupted my prayer.  I didn't even realize I had been praying.

The cardiologist that was on call came in a few minutes later and sat down with me.  His name was Dr. Garn, and I was pretty sure he was LDS, though I couldn't place his last name.  He had a positive spirit.  It was nice to feel that in the midst of chaos.  He took a piece of paper out and began drawing a heart to explain and illustrate what he saw in the ultrasound.  It was then that I first heard the term coarctation of the aorta.  He explained that it was a narrow part of the aorta and it would interrupt blood flow if they didnt operate right away.  He also drew the whole in the heart and added a third condition that he had found:  a narrow aortic valve.  I was so overwhelmed.  It wasn't just one or two issues-it was three.  I remember thinking, how in the world are they supposed to fix THREE problems on a heart this small?  Dr. Garn for some reason still seemed positive and in that moment, it gave me a little bit of hope. 

Jared walked into the room a few minutes after Dr. Garn left and I fell apart all over again.  I gave him some details out in the hallway as best as I could.  I used the picture Dr. Garn had drawn for me and tried to explain the issues that they were seeing.  The nurses were putting a central line in so they told us we had to wait in the waiting room.  I did not want to leave.  I almost told them that to their face.  Jared steered me out the door though and we sat down in the small waiting room.  I realized then that I was in an incredible amount of pain... my medications had worn off by that point, and I was, after all, only 2 days post partum.  Since the nurses had discharged me, I had zero access to any help.  I was due to feed the baby but couldn't in case he would need to be rushed into surgery.  I knew I was still bleeding pretty bad, but didnt' really care.  Jared did what he could to calm me down as we waited for the nurse to bring us back in.  When a doctor came to do so, she told us she had seen tons of babies come in with this problem and be just fine.  It was the first time someone told us that.  I didn't know if I could believe her.

We got back to James and found him resting comfortably.  He had an umbilical line put into his belly button and the transportation team was standing by just waiting for permission from PCH to transport him there.  I had Jared call our families to update them-I knew there was no way I was going to speak clearly enough to make myself understood.  There were a few tense moments when the nurses were trying to decide what dosage of meds to give James in order to open a duct that would take the pressure off his narrowing aorta.  They were arguing about it and the ambulence team had to step in and tell them how much was normal.  I thought it was strange that James would be transported with no shirt on.  They asked if I wanted to ride in the ambulence with James and although I didn't want to leave his side, I felt so scared and I didn't think I could be separated from Jared.  I opted to ride with Jared behind the ambulence.  The transportation team finally loaded James into an incubator and onto the bed.  They wheeled him out the door promising to take good care of him. We grabbed our bags and took off the opposite way for the parking garage.  As we walked down the long hallway, I balled my eyes out.  We passed other people and I found myself wondering if they even knew, if they had any idea the world had stopped turning. 

As we drove to PCH, I wondered if James was okay-if I could even use the word "okay" to describe him anymore. It was so odd being discharged from the hospital after having a baby, but leaving without the baby-worse, going to a different hospital because the baby was in critical condition.  I have never been more scared in my life of losing something that I loved more than life itself.  I was overwhelmed with the thought of what was to come-and at the same time, I couldn't see beyond that hour, beyond just making sure James was still breathing at PCH.  I'm not sure when we said our first prayer together, but I know my heart was crying out to the Lord that entire time, just begging him to protect James and keep him safe while he endured this first challenge of his mortality.  Part of me still wondered if we would get to PCH and find everything was a false alarm-that James was really just fine.  Part of me wondered if we would get to PCH and find James in heart failure.  We drove faster as a result.

We had to go through the Emergency Room at PCH to get to the Cardiac ICU floor.  We knew exactly what room we were heading towards because it was swarming with doctors and nurses. We tried to rush into the room but couldn't enter right away because James had stopped breathing for a few minutes when they were getting him hooked up to all the machines.  He was stabalized moments later, but those few moments sent me to a new level of panic.  I could see him, was near him, but wasn't allowed to touch him or cradle him close to me.  Those few moments watching the medical staff stablize him broke my heart.  We were allowed into the room and once again the tears came as I held James' little hand and placed my hand on his belly.  I could feel his heart beating, could feel his chest rising up and down, sustaining life-the same sensations I felt in utero.  The monitors kept time with his heartbeat and Jared arm around my shoulders kept me breathing.  The doctors and nurses were fantastic-they explained everything, gave us hope, and reassurance.  We were still in the thick of it, and the road was long.  We knew that, even in our overwhelmed states of being.  But the tone in this hospital was different:  these people knew exactly what they were doing.  They lived it, breathed it...it gave us comfort in that moment and in the many that would follow.  It was 5:00pm. Live changes in the course of 5 hours. 

We were not sure on that day, in those moments, what we would learn or even what the outcome would be.  But we had to make a choice that day to trust the Lord.  In those moments before Jared got to the hospital, I knew I couldn't rely on myself, which I tend to do.  I couldn't expect to make it through this situation on my own strength, simply because it was depleted in a matter of hours.  I endured until Jared got there to hold my hard...but decided from then on I needed his support, and more importantly the Lord's....perhaps Jared needed my support to.  James needed all our support, and we were determined to give it to him, this little fighter of our hearts.  And so the journey continues, as does our trust in the Lord.


Post Dec 11th, 11:30 PM

The James Journey: Day 1

Today I decided I needed to be the positive force behind James' progress and recovery.  I decided I need to make sure I am not trying to do everything on my own (super hard for me), but that I needed to be part of the team of people pulling James through. The "head" of that team of course is the Lord, and my trust needs to be on him first and foremost.  So I move forward today comitting to being positive and knowing everything will be okay and according to the Lord's will.

This is Day 1 of James' fight for a better heart.  He was brn two days ago with 3 different heart problems, the worst of which is a narrowing of the aorta.  James was transported to Phoenix Children's Hospital and admitted to their cardiac ICU unit, specifally for chidlren with cardiac problems.  James has been under such amazing care-nurses, doctors, specialists, and caridiologists constantly monitoring and checking him to make sure tubes are inserted correctly, medicine is being monitored and adjusted accurately, and answering/explaining questions for me and Jared as frequently as we need to.  I have to start off James' battle by being so grateful to the Lord for such amazing facilities, people, doctors, and medical advances that this is all possible.  Jared's older brother Adam, had this same diagnosis over 30 years ago, and passed away from it because there wasn't much they could do!  I am grateful that is not the case and James can be well-taken care of.

On Day 1, James was started on prostoglandin to open a duct that would help bloodflow until the aorta could be repaired in surgery.  The prostoglandin made him have a hard time breathing at first, but levels were adjusted and Jordan was given tubes for his nose to help with the breathing.  By the end of the evening, an echocardiogram showed the duct was still completely closed; so the prostoglandin was increased and James will be closely monitoed overnight for any sleep apnea.  Less blood flower to the lower extremeties also caused James' level of lactc acid to rise to 2.5 (should be about 1).  Not a good sign.  After increasing the prostoglandin however, his LA level went back to 1.4, which was fantastic news. 

We will see tomorrow what the plans for surgery are as indicated by the team of specialists, cardiologists (including our, Dr. Garn), and surgeons.    I got to hold James earlier before Jared left and I couldn't help but wish I could hold him in my arms, keep him safe, skin to skin, and answer all those questions that seem to radiate from his wide eyes.  How odd it must be to him to leave the safety of my womb and to enter a world that is (right now) so chaotic and uncertain.  On the same line of thought, I wonder how what he must have known going from heaven and his family there to an immediate trial on Earth.  He must have known, and he must have been okay with it.  These thoughts calmed my worries as I held him last night and felt his heart beating against mine, smothed his hair with my hand, and held him close, hoping he felt my presence, as well as Jared's, right next to him.

I had a talk with James after Jared left tonite.  I whispered to him how special he was and how much our family loved him.  I told him how many prayers were going out on his behalf and how the Lord heard every single one of those prayers.  I told him that this was the time to be a fighter-and that I would be a fighter now too.  I told him that the Lord knew him and knew what he was going through-I promised him that things would be okay, and whatever happened, he would be with me and Jared, a member of our family, forever.  The Lord has promised us this, and that thought, as I whispered it to James, brought peace to my own heart.  I told James he has lots of people watching over him, both on this side of the veil and the other, including my Dad and Adam.  Finally, I told James that we just needed to have faith, to fight through the difficulties of the next few weeks (and probaly well beyond) and rely on the Lord more than ever before.  I gave James a kiss and resolved to follow my own guidance. 

We can do this. We love James and his special spirit, we are so grateful for our family and friends and all the support they have given, both in the hospital and from afar. We are so grateful for Karianna, JD, Jordan, and Sara-bless their hearts for loving their little brother so much already.  Day 1 is over and we'll count Day 2 as a new opportunity to exhibit faith in the Lord.

James Meets the Family

The family got to visit James today for the first time-happy birthday James, you have 4 rambunctious, energetic, totally awesome siblings who want to cover you with slobbery kisses!

Such was true as the kids came with Jared to visit us in the hospital:  Every single one of them just wanted to hold James, touch every open orifice on his face, and smother him with hugs.  They were all so shocked at how teeny his fingernails were, though Karianna thought his toes were long.  Jordan was sure he was never ever that little, and Sara's eyes, oh, they were huge as she stared at James!  That age-old comparison to her baby dolls at home was completely encompassing her brain, of that I was sure!  JD seemed proud.  Proud to be connected to this new little baby.  Too cute, I loved all their reactions!

Funny tidbit, though not for the prude of heart.  I was changing James' diaper and both Jordan and JD took one look and exclaimed, "James has a really big penis!"  They then proceeded to discuss how it was NOT appropriate for that body part to be that size and how neither one of them had genitals that big, nor did another member of our family who shall remain nameless.....Jared and I were cracking up at their conversation, at some point of their lives, they will understand that little boy private parts just happen to be swollen after birth, and that's just the facts of life! 

All in all, our first moments as a family of 7 were wonderful!  It was great to see the kids, I had really missed them.  Although I wanted to see them longer, they only had about a 45 minute time span of relatively good behavior, so Jared took off with them after that.  I am already looking forward to bringing James home and acclimating him into our family dynamic!

Jared hitched a ride from Becca later on that evening to come back to the hospital.  We had two cars in the parking lot, and he needed to get one home.  He brought Karianna back with him, which was great because all she wanted to do during the first visit was hold him!  Daniel and Carly also came to visit James, so we managed to get pictures of all the babies in the picture-if we had Brenna and Shanna, we would have the entire round of babies, birthdates Feb 2011 through Dec 2011!  This is the most spaced out an Erickson "round" has ever been, but it still counts! Cute cute babies, it is amazing how different they all are!

Love, Love, LOVE this shot!