Sunday, November 29, 2009

Lessons Inspired by Rivalry Week

Abby, in her rivalry week garb

Five BYU fans on their way to the game

Both of Abby's teams, BYU and Stanford, won in heroic fashion last night. Both victories came down to the last play with each teams' fans rushing the field following last minute victories.  As fun as the BYU victory was, I couldn't help but reflect on the post-game ugliness on both sides.  This post does have something to do with Abby, so hang on as I develop this.

First there was Max Hall's post-game interview where he revealed how much he hated Utah, its players, its fans, its university, and its entire "classless" organization, and stated in an ironically classless way that Utah "deserved to lose that game"  (Really, Max?  They deserved to lose? They just held you to about 130 yards passing and forced you to throw more incomplete balls than you've ever thrown in a game. Did Utah really deserve to lose?)

Then there was the 40-year old male, Utah fan, who, as my 14-year teenage daughter was passing by him on a crowded post-game stadium stairs, ripped her BYU hat from her head and threw into a crowd of people, where it wasn't to be recovered.

About that same time, the wife of Utah coach Kyle Whittingham, was getting punched by a BYU fan in another scuffle.

Prior to all of that ugliness, I was sitting in the stands next to my older brother, David, and I asked him, "Is it bad to be so caught up in who wins this game?"  The hour before the game, I couldn't eat anything, as my nerves made my stomach queasy.  I continued, "I've been nervous all week, as I've thought about his game for much of it. Is that good or bad?"

Dave responded, "I don't think it's good.  I've been trying to temper my emotions too, and it hasn't worked."

"However," I said, "the rivalry is fun. It's fun to care so much that your knees are week, as mine are right now.  It's fun to want to win; it's fun to want to beat a team so badly that you have a hard time eating before the game.  I guess the big question is:  what does the game do to your soul?  Do we feel hatred?  Does losing ruin the rest of our year?  The hatred, the post-game loathing of the other team, and even the loathing of the defeated self is not good.  So, if I don't feel that way, I guess it's okay to be nervous and to get caught up in winning this game."

Of course, even "getting caught up in winning games" was so trivial just a few weeks ago. Let me touch on two memories.

The first was the 10-minute drive that we would make every day from Leslie Neumarker's home in  Menlo Park to Lucile Packard Children's Hospital.  We made that drive in Leslie's Nissan Pathfinder.  The first time I sat behind the wheel, I noticed that the radio dial in the Pathfinder was set to KDFC 102.1, a Bay Area classical music station.  Despite being a AM Sports and Political talk-radio junkie, I didn't change the station from Classical until well into our third week in town.  I remember distinctly thinking, as we made the drive to and from the hospital each day, how much I enjoyed the soothing sounds of that classical music.  Prior to the surgery, while uncertainty was at its peak, the music complemented The Spirit that was so deeply touching our lives.  We wanted nothing to distract from the peace that we were feeling. Talk Radio would have.  And in the immediate days following the surgery where we felt that strange mixture of gratitude for the blessing of what the surgeon called a "complete repair" and the melancholic feeling of being humbled by the fact that not everyone receives the same blessing, the things of The Spirit continued to weigh heavily on us and the classical  music of KDFC again did not distract from that but complemented it. I was involved in holy things, and I craved holy things, and I didn't want anything to get in the way.

The second memory is of my experience with the BYU-TCU football game that I didn't get to see.  This game was played four days prior to Abigail's surgery, and one day after our arrival at Lucile Packard.  I had waited 12 months for this game, a chance to avenge last year's humiliating blow out in Fort Worth. Of all the games that I wanted to be at this year, the TCU game was it.  The fact that ESPN's College Game Day's broadcast was coming to Provo for the game made it that much more important to me.  Even the national media was caught up in this game.

Naturally, the game's significance for me all but disappeared about 6:30 p.m. on October 19 when Abigail was ushered into the NICU.  But by the time game-time rolled around, we were settled in at Lucile Packard with a clear picture of what was in store for Abigail, and I was curious to watch or listen to the game, though my passion for it was appropriately tempered.

I stepped out of the NICU just before game time, and tried to find the game on the TV in the Parent's Lounge.  Because BYU games are broadcast on obscure cable channels, the game was not on the lineup offered by the hospital's cable feed, so I pulled up KSL on the internet, stuck my earphones into my laptop, and listened to Greg Wrubell call the game. I recall being interested in the game, and hoping that BYU would win, but not being a tenth as emotionally invested as I was at last night's Utah game.

As TCU proceeded to methodically dissect BYU's offense and defense en route to a 38-7 win, I recall a another curious emotion.  I was disappointed, as I wanted to believe that BYU's team was better than they were showing.  However, I distinctly remember that despite a little bit of disappointment,  I just didn't care too much about the loss.

These were sacred moments at Lucile Packard, moments that classical music complemented and moments that were not enriched by getting too worked up about a football game.

Yet, slowly the world and its cares butted its way into my life.  I recall the first time I was angry after Abby's birth.  It came about four days after surgery.  I had read an email from work, and some issue angered me.  About an hour later, I was driving in the car on the main highway, El Camino, that runs through Menlo Park and Palo Alto. Another driver did something that angered me and I felt justified (for about 10 seconds) in getting mad.  On both occasions, I remember feeling shocked by my anger--a feeling of shock that I wouldn't have had a few weeks prior.

Those of you who know me well, know that I am not a naturally patient person. Whether it be at work or on the tennis court, I tend to erupt quickly.  I am a reactor.  I react angrily when things don't go well. Fortunately, those eruptions are usually short-lived, and I often come to my senses quickly, "chill-out" and get to the business of solving the problem in a more emotionally stable way. I rarely stay mad for longer than a few minutes, and rarely let anger boil within me.

But still, my life prior to Abigial's birth was filled with many moments of quick outbursts of impatience and anger. Thus, the fact that I found myself shocked at those outbursts was in and of itself shocking.  Since when have I have been surprised at being angry??  But I had gone probably two weeks without any anger, which I attribute to the Spirit, and a re-emergence of the few priorities in life that really matter.

I realized after those first two outbursts that I had entered a new phase of this experience--the phase where I began to step foot in the "real world" where I would have the challenge of maintaining the spirit as I dealt with the necessary cares of the world.  At some point I had to go back to work.  At some point, I would have to respond to the big kids who wouldn't always make the right decisions. At some point, I would be at another football game, faced with the choice to either appreciate the good things about a rivalry or to hate the rival.

Of all the lessons learned from our journey with Abigail, I have pondered this one the most:  how do I keep one foot in heaven and one foot in the real world?

I have often wondered why it is that we spend nearly one third of our lives--30% of our probationary period--working, and being consumed with the things of this world.  I spend 30% of my life trying to earn money--something that the scriptures tells us must be a lower priority.  So, if the pursuit of money must be a low priority, why do we  have to spend 30% of our lives working?  Because it is precisely in work-type environments where we learn who we really are, and  where we are prove our worthiness or lack thereof.

It's easy to be a nice person in a Children's hospital. It's easy to think good thoughts, to say nice things, to have your priorities in line, and to be genuinely concerned about the welfare and trials of others when your child is in the NICU. It's easy to be Christlike when you're faced with matters of life or death, when you are compelled to rely on mercy of God for the health of your child.  It's easy to feel the spirit when  you have no other choice. Saints aren't made in Children's Hospitals; saints are merely inspired by Children's Hospitals--but they prove their worth and pass their tests when they're back in the real world.

Unfortunately, I've failed several of those tests since entering the real world after Abigail's surgery.  The first failure was my first Sunday home. I had looked so forward to getting home, and savoring the Big Four; I had plans of being the greatest, most patient, most invested father ever.  I was going to love them like I never had.

That lasted about twelve hours.

Twelve hours after our celebratory homecoming we found ourselves in Sacrament Meeting.  Lisa was at home with the baby, and I sat with the Big Four in the overflow in cultural hall on the metal chairs that are stored under the stage.  The speakers at the service were a missionary who just leaving for Brazil, and another missionary returning from Spain.  The missionary who was leaving was prepared, and the missionary who was coming home had obviously served a dedicated mission.  I wanted my kids to participate in the spirit of that meeting.  Unfortunately, to put it mildly, they didn't share that same desire.

At one point, Sami had Jeffrey in something resembling a headlock, and Daphne and Emma appeared to be in a contest of who could speak the loudest.  The first five or six times I asked the kids to be more reverent, I did so kindly, and with patience.  But with each ignored request for reverence,  my patience was growing exponentially more thin.  Before too long, I had forgotten all the intentions I had for their spiritual enlightenment from the meeting, and was now set on just getting to be quiet.  As embarrassed as I am to admit it, my motivation for helping kids be more reverent turned from a concern for their welfare to my concern about those around us might think of my parenting:  I quickly became more concerned about how my kids' noise was affecting those around us, and I was now embarrassed at what I imagined they were thinking:  Why haven't the Reeves taught their kids how to behave?  You know that you're no longer in tune to the spirit when your motivation for being good or for teaching your children to be good is based on a desire to "look good" for the neighbors.

Not surprisingly, the more I worried about our neighbors' opinion of me, the more angry I got, until my anger climaxed with a tight squeeze of Daphne's bare arm, a squeeze that was intended to inflict sufficient pain to stop to the talking.  I then threw a verbal dagger at Sami and Jeffrey, as I whispered, "You two should be proud of yourselves.  You've succeeded in ruining this meeting not only for yourselves, but for all those around you.  Nice work, you two." Not one syllable of that verbal reproof was spoken in a spirit of love.

As I finished with Sami and Jeffrey, I glanced at Daphne, who was inspecting her father's fingernail prints in her bare arm.  I had failed.  Twelve hours after our celebratory homecoming, I had momentarily forgotten everything I had learned in the last month; I had forgotten all the promises I had made about how great of a father I was going to become; I had forgotten how my heart had changed.

When sacrament meeting ended, I said goodbye to my kids, as they went their separate ways to Sunday School and Primary.  I stood in the cultural hall,  watching my kids disappear, a bit distraught that I was the same old Jeff that I was before Abigail was born.  As I stood in the cultural hall, I began to reflect on an email that I had sent to a friend while I was at Lucile Packard.

My friend had emailed to me thank me for writing the blog, and for sharing this experience with him.  He then shared this:
I know this sounds retarded because I would never want to go through what you guys have been going through, but a little part of me is jealous of the experience.  Times like this really do help remind you of what is important, and I know I certainly need that reminder from time to time.
I replied with the following thought that returned to be as I stood alone in the cultural hall:  
Yeah, I wouldn't wish this on anyone, but then again I would in a minute.  So hard yet so beautiful.  Your time will come in some way--it may not be the illness or death of a child or spouse, but it will be something that will try your faith and cause you to completely surrender.
The challenge for all of us who emerge from such a trial is to not forget what we've felt.  When you go through something like this you lose all desire for things that aren't holy, and then slowly, as your troubles fade, your interest in unholy things returns.  I can only hope that this feeling lasts, and that if I tend to forget it, that I can return to it when I need strength.  My father wrote me a letter when I was a missionary and he said the following, which has some application here:  "Make sure to keep a journal; it will be a reservoir of spiritual experiences from which you can drink in times of spiritual drought."
I hope that the pages I have written will be a reservoir for me when I'm in a drought sometime in the future.  That drought will come--it always does. The question is--will I remember which reservoir to turn to?
At that moment I thought of the reservoir of spiritual experiences that we had filled for four weeks; I thought of how my heart had changed, and the tender prayers we had offered; I thought of the perspective I had gained and the love I had felt.  I was in a drought, so I drank from that reservoir; I was back in the real world, so I put one more foot back in Heaven.

That is the challenge that we all face.  We all have to spend most of our time in the real world.  We work.  We go to rivalry games.  We make dinner.  We clean the house.  And in all those experiences, we are tried.  At work, a vendor, a customer, or a co-worker angers us.  At home, we clean the house, only to see the kids mess it up within minutes.  At the game, an opposing fan gets in our face. This is the real world that we always have at least one foot in. Our challenge is to remember in those day to day moments what we have felt when the spirit was with us, when God provided us a flood of light and Heaven; to keep one foot in Heaven and to return to the reservoir when the real world tries us.

It has been two weeks since that first failure. It disturbed me so much that I used it as leverage to change.  I have had a few more failure since then, but I am pleased to say that I have had more successes than failures.  I have been a little more slower to react, a little slower to forget, and lot quicker to remember and to return to my reservoir. And each time I resist the urge to jump back into the world with both feet by returning to my reservoir, I gain additional patience and additional light.  Sure, I continue to fail daily, but I tend to run back to that reservoir faster; I tend to want to repent faster.

As I said in an earlier post,we never arrive. We will continue to fail, but if we are humble enough and willing enough to return constantly to that reservoir our path to Heaven--though full of ups and downs--will trend gradually upward. Good night.

Friday, November 27, 2009

Another Answered Prayer

Above is a photo of an all-too familiar Abigail with plastic all over her body.  No worries. Nothing is wrong.  This photo was taken last Friday at her first follow-up appointment at Primary Children's.  All of this plastic was the various leads to monitor her vitals, all of which came back perfectly normal.

Seeing her, though, with all this "stuff" attached to her body brings back vivid memories of the recent past.  It brings back one memory in particular--the memory of Lisa and I kneeling nightly at the side of our bed in Menlo Park, an antique bed frame with a thick box spring and mattress so tall that our arms rested on the same plane as our shoulders as we knelt.  We would pray each night that our children at home would be touched by the goings-on of Abigail, that the spirit that we were feeling would touch their hearts too, and that the lessons that we were learning would be taught to them as well.  We learned yesterday that those prayers were answered.

The setting was thanksgiving dinner at Grandma and Grandpa Reeves' house.  All of my siblings and their families except for Marc and his family, who live in Seattle, were present.  Sometime after dinner we all met in  Grandma's living room to discuss and share the things for which we were grateful.  Grandma Reeves had handed to everyone in the room at sheet of paper titled "My Gratitude List."  Underneath the title were about 20, numbered, blank lines upon which we were to write the things for which we were grateful.

After we had each taken the time to write, everyone in the room shared the top five items on their list. Samantha was the first in our family to share.  Her first item was Abigail:  "I'm thankful for Abigail.  She has changed all of our thinking," which is Samantha's way of saying, she has changed our hearts.  Of all our children, Samantha, who is 14 and the most independent of them all, was somewhat aloof to the idea of us having a baby.  Throughout the pregnancy, she seemed to be the least excited about the prospect of having another addition to the family. She was respectful, but we could sense that Sam wondered if her parents were simply too old to have another child.  And though Samantha usually refers to Abigail as "The Child," we sense that heart warms each day to her sister.

Sam usually keeps her emotions and faith close to her vest. She's a deep thinker, who doesn't like to show emotion.  But I have sensed lately that like Enos in the Book of Mormon that the words of her father often sink deep into heart--despite her not wanting  you to know that.  Apparently, that had happened during our journey with Abigial.

A few moments later Jeffrey, our 12 year old, spoke. He too began with Abigail:  "I am thankful for Abigail.  She has brought our family closer to Christ."

Then Daphne, our 9 year old:  "I am grateful for Abigail.  She has given me us a testimony."

Those few words spoken by our three oldest children were worth every moment of anxiety and worth every dollar spent in Abigail's behalf.  Today, I am grateful for yet one more answered prayer .

Tuesday, November 24, 2009

Lucky--First Full Post By Lisa

Jeff often says that I am the best sell he ever made.  He then proudly goes on to tell about how we met.  A little embarrassed by the attention, I quietly sit by and wish I could express how much I love him as beautifully as he does.  I definitely got more than I bargained for.  He is far better than I ever expected.  I often wonder how I got so lucky.

I sit here with baby sleeping nearby and Jeff at work.  And again, wish that somehow I could pay tribute to the man who exceeds my wildest dreams!  Jeff went to work for his first full day yesterday.  I miss him!  It was a wonderful blessing to have him by my side for almost 4 weeks!  While being 800 or so miles away from our "Big Four" and having our child in critical care was very difficult, in a way it was a blessing, as it allowed Jeff and I to be on one continuous date for a month straight.  We got to eat breakfast, lunch, and dinner together everyday--just the two of us. We got to sit by the bedside of our infant, talking, laughing, and sometimes crying.  The only thing that mattered was us, our family, our friends and our faith--everything else was pushed to the side.  That month together was in some ways the most romantic time we've ever spent together--a long overdue second honeymoon 15 years into our marriage.

Jeff is very passionate about his work.  He is a wonderful provider, but he dropped it entirely to focus on us.  I was so appreciative to have his undivided support and attention.  He was an amazing strength and blessing.  Jeff was has been so compassionate and concerned about my recovery.

He has supported me, protected me and spoiled me- washing out pump parts in the middle of the night, taking freshly pumped milk down to the freezer (also in the middle of the night), dropping me off right at the door and picking me up everywhere we went, parking the car and making a solitary walk a zillion times to the hospital, staying with Abigail while I slept, running countless errands, handling all the logistics and headache of hotels/airline flights/ insurance, making a heroic effort to make sure that all my pumped milk made it on the airplane instead of being dumped down the hospital sink, getting me a massage, arranging for our kids to visit and then spending time with them while I stayed at the hospital etc.

Jeff was definitely a father bear watching out for Abby.  He was so on top of everything that was happening with Abigail in the hospital:  asking questions, pushing for things to be done, taking countless pictures, blogging etc.  Abigail was a daddy’s girl from day one.  Even in her tiny and sedated state she would recognize and respond to his voice.

Jeff loves his little Abigail as he does Samantha, Jeffrey, Daphne, and Emma.  He is so tender with Abigail and I love to watch him.  In the middle of the night a few nights ago, Jeff was feeding Abigail- at time that most people are not happy to be awake- he made the comment, “I love having a baby.”  How blessed am I, and how blessed are my children to have a husband and father like Jeff.  We love you!

Abigail Update:

We went to the pediatrician yesterday, and she's on the right track.  She had even gained a half pound since Friday; of course, who really knows--it was a different scale.  Weight gain really is the last major milestone Abby must meet.  The Stanford doctors had been fortifying my breast milk with formula to add calories to it.  They called for us to continue to do so for the time being.

But there's a tiny bit of rebelliousness in us, and we chucked the formula just after we left the hospital.  We've never been big formula fans, and synthetic stuff can never come close to real thing.  However, when she weighed in less at Primary's on Friday than when she left Stanford, we started to wonder if our disobedience was going to come back to bite us.  We were grateful to see some gain on Monday!

The pediatrician wants to see us in a week to check her weight gain.  If it doesn't increase by enough, then we may be back on the formula fortification plan.  As her nursing increases, however, formula fortification will only get in the way of that.

Well, I'm heading off to pump--yet again.  Abigail hasn't caught up with my milk supply, so I continue to pump to keep the supply up.  I spend most of day  nursing, pumping, and feeding her a bottle.  And I'm loving every moment of it (okay, so I'm sick of pumping, and I now know what those dairy cows feel like--but everything else Abby-related is wonderful).

Sunday, November 22, 2009

Thoughts on President Eyring and an Abigail Update

A few Sundays ago I received several emails and a phone call regarding a regional conference in Utah, were President Henry B. Eyring spoke.  Sometime during his talk he referenced a recent experience where he had gone to Primary Children's to give a blessing to an infant with a serious heart condition. The timing of his talk led those who heard it to believe that he was referring to his blessing of Abigail.  His comments have inspired today's post.

I was not there, and so it is likely that some of what I say is in accurate, but I believe that I grasp the spirit of his point.  President Eyring was apparently speaking about purity, and of our need to become more pure.  He then referenced his experience with what was likely Abigail.  He said that he had two impressions as he left his office to minister to this baby.  The first was a sense of reverence for how pure this child was.  The second was that as he reflected on her purity he began to hope that he might be someday be like her.  It is that second statement by President Erying that I wish to discuss today.

Here's a man that most of us would consider pure.  Whether you believe, as I do,  that he is a prophet, it is impossible for one to listen to President Eyring speak and not consider him a pure and holy man.  Here is a man who has spent a lifetime trying to keep himself pure enough to be receptive to the spirit. And here is a man who has made and kept thousands and thousands of small commitments to do what is right--despite how inconvenient those commitments must have been at times.  This is a man that is pure and that, from our perspective, should just be able to "coast" into heaven.  What more must he do?

Yet, in the moment that he is called upon to give a blessing, his thoughts are not on his own righteousness and purity, but in contrast, he marvels at the purity of a newborn, and hopes (and surely prays) that me might someday be this pure.  That is spectacular.  President Eyring apparently doesn't believe he has "arrived."  And if he doesn't believe that he has "arrived" then none of us should be resting on our laurels either.

It is a natural law that no living thing ever stays the same--we're never in neutral.  We are either progressing or digressing.  Just as our muscles atrophy if we stop working them, our spirit does the same. Such is the nature of all eternal and living things.

Some of us might feel weighed down by the fact that we never "arrive" and that we have to keep pushing forward, trying to be more pure and more holy.  Some are burdened by that.  I don't believe that such a feeling comes from Heavenly Father.  I don't think that President Eyring is burdened by his need to continue to progress and to reach higher.  I suspect that he finds joy and peace in the process of trying to progress.  He finds that same joy and peace as he repents of whatever small sins he commits. "Enduring to the end" is such an ominous phrase, and it implies to some a certain kind of agony that those walking the path of righteousness must put up with.  I don't believe that is true.

Even though life will contain its fair share of agony, I believe that "enduring to the end" is can be a process mostly full of joy, light, and happiness.  After all, we are promised that "he who doeth the works of righteousness shall receive his reward, even peace in this world, and eternal life in the world to come" (DC 59:23, italics added).  Note that the reward for righteous strivings is not just a big fat prize at the end, but is the reward of peace right now.  I only hope that I will have the courage to continue to hope for purity like President Eyring so that I can always have the peace we've had since Abigail's birth.

Update on Abigail

Abigail is still as dainty as ever.  Most have commented when they see her for the first time that she is smaller than her pictures online suggest.  She is still tiny, and according to the scale at Primary Children's on Friday, she is still under her birth weight.  Check out her bird leg below:

Those who are familiar with our babies know that this bird leg is a typical sight.

Apparently, she has lost a little weight since leaving Lucile Packard, which doesn't make a whole lot of sense, as she has been chugging milk like it's about to go extinct.  I was a little nervous as I was reading the blog of a fellow heart patient parent ( darling girl that is a twin).  Madison's mom said that one of the things that alerted them to the seriousness of Madison's heart condition was the fact that she wasn't gaining much weight.

However, Dr. Mack, the cardiologist we saw on Friday, wasn't terribly concerned about the weight because she isn't exhibiting all of the other signs that typically accompany a condition like Madison has--excess sweating, over exertion when eating, a heart beating extra fast.  Abigail has shown none of that.  Dr. Mack chalked up the lack of weight gain to the fact that every hospital has a different scale.  He said that the only scale we should use as a benchmark should be that of her pediatrician where she will visit most often.  I am chalking the weight loss up to (1) the scale and (2) all of the cords attached to Abigail at Lucile Packard (that the nurses claim are somehow excluded from the weighing process) that gave Abigail a wrong measurement.

Other than the lack of weight gain, Abigail's vitals seem to be functioning perfectly:  oxygen saturation is at 99 to 100%, her heart is pumping at a good, solid, consistent speed.  Her breathing is consistent with that of an infant.  She eats without laboring.  Amazingly, she takes to the bottle AND the breast equally well.  When bottle feeding, she consumes about 3 ounces of milk at a feeding (4 yesterday).  So far so good.

In the meantime, we continue to love and spoil this little miracle.  Below is a picture of Jeffrey holding his sister just after he woke up yesterday (12 year old boys usually don't wear shirts when they sleep!).  Is this not sweet?  There is nothing better than to see your children love their siblings.

Big brother getting a little "skin to skin" with baby sister.

Friday, November 20, 2009

Quick Abigail Update

I just wanted to give you a quick Abigail update before we headed off to Primary Children's for her first follow-up visit with her cardiologist.  I never thought one of my children would have their own cardiologist. Don't only old people have a cardiologist?

This will be one of many visits up through adulthood that she will likely have at Primary Children's. Apparently, a lot of 40 year old people continue to frequent Primary Children's hospital for follow-up visits because the complex nature of their heart problems is something that the physicians there are used to dealing with.  They are problems that most cardiologists don't see.  And that makes sense.  That is probably due to the fact those children that don't have their complex heart problem diagnosed and treated as a child don't make it into adulthood.

Home life is becoming more normal.  It's been so fun to the kids dote over their sister.  Our 12-year boy, Jeffrey, has been perhaps the most affectionate and tender with her.  He's crazy about her, volunteering to do anything she needs, including diaper changes (we'll see how long that lasts).

She is starting to sleep better, waking up only once during the night.  She also is starting to nurse again.  Just over a week ago, we committed to the bottle just so that we could get her fattened up so that she could leave the hosptial.  The bottle was easier, and therefore, she could take in more calories in one sitting without getting too tired and/or expending too many calories in trying to eat.

We were afraid that too much bottle in the beginning would make the breast unappealing, but even after we came home from the hospital we were afraid to nurse because we didn't want the good eating habits to take a turn for the worse.  She was still slightly under her birth weight when we brought her home, so weight gain was still a high priority.  At home, she was taking so well to the bottle, as she increasingly would drink more ounces by the day.  Beyond that, it is complicated for Lisa to nurse and pump, as the baby can't possibly keep up with the milk production that Lisa is currently putting out.  That means that you have to nurse as long as Abby can stand it, and then pump afterward.

Thus, it was with some trepidation that we introduced the breast again, so we did so slowly. A little here and a little there. And so far the results have very good--despite the fact that she is also getting simultaneously bottle fed.

I want to say a few things about her nursing, including the fact that her being literally tongue tied (another small defect that I haven't mentioned that I'll develop later) has not seemed to affect her ability to latch-on and nurse well, as it usually does.  But we're going to be late for her appointment if I don't quit typing.  I should have time to bang out a couple of posts this weekend that I've really wanted to get to. One of those includes some lessons I learned from some comments that President Eyring made in a recent conference regarding a baby that he just blessed at Primary Children's.

I'll leave you with a few photos Abigail's first bath at home--the traditional first bath by grandma:

Wednesday, November 18, 2009

A Lesson from Steve, the Front Desk Guy

I don't know his name, but I'll call him Steve for now.  Steve is one of the heroes that I referred to in my last post, one of the reasons that four weeks in two children's hospitals renewed my faith in humankind.  Steve manages the admissions front desk at Lucile Packard Children's hospital.

Two or three times a day Lisa would sit near Steve's desk that was just off the lobby as she waited for me to bring the car from the parking lot to the unloading zone just outside the entry to the hospital (I tried my best to allow her some time to recover from labor and delivery by not having her make the trek to the car every time we left the hospital.  Lisa and Steve became casual friends and, at a minimum, would exchange friendly gestures, and would often lightly converse, as she waited for me.

One night, she overheard Steve talking to a security guard stationed nearby.  The following is Lisa's recollection of that conversation (and her first post, by the way, on the blog!):

"I got in trouble last night," Steve told the guard.

"What'd you do this time?" the guard asked.

"I was late . . . Then I had to suction her out."

I thought to myself, what in the world?  He also suctions people at the hospital?  Economic hard times must have hit the hospital as well if they're asking their front desk people to suction patients!

I so was so curious about him suctioning people that I butted into the conversation: "You suction people out too?" I asked.

"Yeah, my girlfriend," Steve said with a curious smile.

His girlfriend is in the hospital and he suctions her out???  

He stepped forward, flipped open his phone and showed me her picture, which was the wallpaper on his screen.  Steve's girlfriend was four. A precious dark haired four year old.

He explained that this little girl was in the hospital for hospice care--she was sent to the hospital to receive care while she slowly died.  If her age didn't make the subject of death hard enough to swallow, the following fact made the thought almost unbearable. For reasons that Steve refused to judge, his "girlfriend's" parents were only able to visit for an hour every few months.  Steve saw a need.

Steve learned about this girl's situation because of his duties at the front desk, and he quickly took an interest in her.  He decided to undergo training to serve as a volunteer (after-hours and unpaid) to spend time with his  girlfriend and lessen her burden.  Part of his training was to learn how to suction, something that she apparently needed often.  I didn't ask what he was suctioning, but I suspect it has to do with fluid in her lungs.

Apparently, his girlfriend got so worked up about Steve being late (could this be another person who is abandoning me, she might have thought) that the trauma caused her to build up excess fluid somewhere, which is why Steve had to suction her.

Every day Steve spends an hour or more with his girlfriend.  He takes her on walks, reads to her, plays with her, and suctions when necessary.  So after a long day at work, he has his "date" with his girl--a little girl who craves the love and attention of someone like Steve, someone who sacrifices the things of the world to give of himself to a precious child.  His companionship has seemed to prolong not only her life but has given her added energy--enough energy that she is now able to attend the pre-school held at the hospital (something  she couldn't do just a short time ago).

I told him what a blessing it was for him to visit her, to which he replied, "Oh, no, she is the blessing.  I get so much in return from her.  I am the one who is blessed."    

Gordon B. Hinckley said that world continues to grow more evil, but at the same time it continues to grow more righteous at the same time.  He was right. For every bit of evil, there is good.  For every rotten apple, there is a ripe one.  For every self consumed narcissist, there is a Steve. We met lots of Steves on our journey  with Abigail. It reminded that the world is also good.

Tuesday, November 17, 2009

The Reunion

It’s 3:00 a.m. Abigail’s lungs are proving to be fully recovered, as she shrieks for food or comfort—which one, at this point, we're no loner certain. In a semi-conscious state of delerium, we reach for the nurse’s call button . . . yet no one comes . . .

Shouldn't hospitals offer the following special?  For every $100,000 you spend with them, you get one week free of night-shift nursing.  What a perfect way to help the parents of NICU patients to recover?  I think we would sign it into law with all of the healthcare reform that's going on right now :). Would someone get President Obama on the line?

Such is the story of our first three nights at home. We’re now in the newborn phase—you know, the part that Abigail skipped, sedated and hooked up to machines for four weeks. Lisa and I take turns sleeping. We both handled Saturday night, then I took Sunday, and she took Monday. I forgot how much fun this part of child-rearing was. Having said that, we seem to be more patient than we were the previous four times we went through this phase—actually, the previous three times we went through this. Daphne slept through the first night she was born and never looked back. Lisa woke up the first monring after Daphne’s birth, surprisingly rested yet panicked, wondering where her baby was, and what might possibly be wrong.  “Where’s my baby? Is there anything wrong?” Lisa asked the nurse over the intercom attached to her hospital bed.

“She’s still asleep in the nursery. Hasn’t made a peep since we put her in here, so we figured we wouldn’t bother you,” said the nurse. Despite some of the physical resemblances to Daphne, Abigail's sleep habits bear no resemblance to our third child.

Even with the sleepless nights, we are thrilled to be at home, and to be able to acclimate the baby to a normal, tubeless, monitor beeping-less environment.  Allow me to share some of the reunion details.

As I mentioned in my last post, no one except for Lisa's parents knew in advance of our surprise arrival.  With the speed and various mediums for the flow of information these days and the risk of the news leaking out to the kids, we were afraid tell anyone other than our kids' primary care-giver for the last four weeks (Lisa's Mom, LaRae) and the chauffeur who needed to pick us up from the airport (Lisa's Dad, Darrell).  I did call my parents while we we were at that airport and told them, and asked them to join us for the reunion.

On the way home from the airport, Lisa got a somewhat indignant text from Samantha, "Mom, Grandma Stoddard won't let us sleep over with Grandma Reeves tonight!"  The kids had gone over to watch the BYU and then the Utah football games with my side of the family at my sister's house. During the games, Grandma Reeves asked the kids if they wanted to sleep over with her that night (at this point, even Grandma Reeves didn't know that we were coming home).  Poor Grandma Stoddard had to play the mean grandma and reject the request of Grandma Reeves to make sure that the kids were home, as she made up some story about her needing the kids' help that night.  I'm sure Grandma Reeves thought, "You need their help on Saturday night at 9:00 p.m.??" but she was kind enough not to say anything.  Lisa texted Samantha back, telling her it was ok, and that she needed to do whatever grandma thought was best.

We beat the kids home by five minutes. During that five minutes, I was frantically searching the hard drive of my video camera for footage that I didn't want. I had finally consumed all of its memory with about 400 pictures of Abigail and several hours of video from the morning we went to the hospital for delivery to the time    that we loaded Abigail into the car at Lucile Packard.  I was now completely out of memory, and needed to clear up about five minutes worth of space to shoot both their surprised faces as they walked through the door as well as each of their first holding of the baby.  I was erasing the last unwanted scene as they walked through the door.

Some of you are familiar with our house.  The kids walked in the front door with Grandma and Grandpa Reeves.  There is a wall that separates the entry way from the family room, where Lisa and I were with the baby.  Abigail was making "baby sounds" and a slight whimper was just becoming a faint cry, as the kids walked in.  I heard Grandma Reeves ask the kids, "What's that sound?"  A moment later, Jeffrey, followed by his sisters, entered the family room and saw their sister for the first time--that is, they saw her unobstructed for the first time, detached from tubes and without the protective plastic casing of a life flight transport bed.  They were able to really hold her this time, touch her face, kiss her, and feel her tiny, infant body swaddled in blankets.  A tender moment for sure. In fact, emotions bubble to the surface a bit as I write this.

Ahh, together at last!

Candi, our teacup poodle, finally has someone she can pick on

Just a few minutes after the kids were reintroduced to their sister, they insisted that mom drop everything and come to the nursery, "Mom, stop talking to Grandma. You have to come see the nursery."  All of us filed into the 10X10 nursery.  I had some inkling that it had been redecorated by our close friend, Jana Lynn Kofford, who had called me privately a few weeks ago to aske me to send her some pictures of the baby's hands, feet, and face.

Time out for a commercial.  Just as I was typing that last sentence, Abby made it clear that she was ready for a diaper change.  If there is one thing that she will not put up with it is messy pants.  So I left the keyboard and took into the nursery to commence with my duty to clean up her "duty."  Just as I was holding her frog legs into the air with one hand, while I wiped some of her bottom with the "unscathed" section of her messy diaper in preparation for the final clean with the wet wipes, Abigail started to pee as if her bladder was at twice its normal capacity.  I quickly open  the messy diaper and inserted it more fully underneath her, as I tried to catch the clear urine as it left her body like the gushing water just after the Teton Dam broke.

It kept flowing and flowing.  Before long, my attempt to protect her surroundings from getting wet were completely in vain as the pee was quickly outpacing  the already saturated daiper's ability to soak it all in.  And even if the diaper would have had the material sufficient to retain it all, it wouldn't have mattered. Before long, Abigail's pee had projected straight up and out--something that I had only experienced with my little boy, Jeffrey Jr, and something I didn't think was possible for a little girl to pull off. I can her hear thoughts now:  Anything boys can do, girls can do better!  Yeah, I guess so.

The projectile pee was splattering all over the BYU sweatshirt (at shoulder level, mind you) that I was wearing (in fact, that I am still wearing--you lose all pride quickly as a parent, and you're not going to waste a load of laundry on a little pee or spit-up that winds up on your clothing, right?).  Now, before all those Utah-fan friends of mine start gloating at the desecration of my beloved Cougar sweatshirt, know that Abby's retaliation against BYU has nothing to do her allegiance to the Utes. Her team is the Stanford Cardinal, an entirely different shade of red.

Abigail's rather significant discharge of urine must have something to do with the Lasix, a diuretic that she continues to take at the doctor's orders.  Apparently, the Lasix helps her body to rid itself of swelling and excess fluids.  I believe that it also has some blood-thinning qualities to it (but don't quote me on that).

Ok, back to the nursery. I knew that Jana was up to something but I couldn't have imagined the scale of it.  The picture below doesn't do it justice.  Let's just say that it is far and away the most elegant room in our house.  I walk by the nursery several times a day and I just . . . stop and look. It is so beautiful. Yes,those curtains are made from raw silk, a material that normally costs nearly $150 a yard.  Jana, a frugal shopper, found a drapery outfit, Johnson Drapery in Provo (yes, that's a plug), that gave her the material for pennies on the dollar and tailored it to fit our room for not much more.  Apparently, the fabric was ordered by mistake or had been rejected by another customer who had changed her mind.

Anyway, the drapery, three pictures of Abigail (a foot, a hand, a close-up of the face), stenciling on the wall, lamps, a chandelier, a new comfy chair with ottoman for mom to nurse (or pump) in, decorative plates on the wall, wicker baskets for laundry and baby supplies, and an end table that belonged in the nursery of her son, Cooper, make this room a showcase suitable for a Better Homes and Gardens photo shoot.  It's a far cry from the nursery that our first, Samantha, slept in:  a cinder-block room at the Rabbit Hutches, otherwise known as Wymount Terrace, complete a single piece of furniture:  an old crib that had been donated to us by Lisa's brother Paul.  I guess that's why Sami is so practical!  Abigail, on the other hand, may grow up thinking that all bedrooms look this way (I pity her future husband).

As you can imagine, Lisa shed a few tears as she beheld the sight of her remodeled nursery--a nursery that represents all of the elegance that money can buy, but more importantly, the love of a dear friend who gave a piece of herself in providing Lisa with the perfect "Welcome Home" gift.

The world is full of such people.  My next post will  highlight another one of those people--another hero we met during our journey with Abigail. I've decided to stretch out my concluding thoughts that I've been promising into a few different posts, as you and I don't have the time to write and read all of this in one sitting. Good day.

Monday, November 16, 2009

Video: Thank You

I still want to you tell you about the reunion and share some final thoughts on the experience, but for some reason, I don't have as much time as I've had over the last four weeks! Sometime before this time tomorrow, I'll post some concluding thoughts.

Four weeks ago today, this journey started. In fact, four weeks from this very hour, it started to get a little scary. What a miracle. Enjoy the video below.

Sunday, November 15, 2009

A Surprise Visit to Home

Mission Accomplished

I’m tired. A good, satisfied, peaceful tired. After we barely made our plane (more on that below), and I was seated cozily next to two of the five most important women in my life, Abigail Rose and Lisa Marie, the exhaustion finally started to settle in. We had nothing left to accomplish, no milestones to reach, and no more procedures to get through. We were on the runway in Oakland, aboard a tiny Sky West plane, waiting for takeoff, and it hit me: I’m tired. The kind of tired you feel after you’ve accomplished something really special, or worked hard to get (not that I done anything, because I haven’t, but I get to share in the accomplishment of so many skilled people who have fixed Abigail’s broken heart). So I set here tired--but a little giddy at the same time.

In about three hours we will walk through the front door of our home and surprise our four kids, who think that we’re coming home either Sunday or Monday. Lisa will be holding the baby and I’ll be videotaping (yes, there may be yet one more blog entry to show you that ). I grin as I think about the looks that will be on their faces. By the time you read this post, we will be home, and we will have celebrated with the kids until none of us can stay awake any longer. Tonight there will be no bed time. We’re just going to let it all happen the way it wants to. We might even order in dessert or a late night snack. All caution to the wind. Break open the Martinelli’s! I might even call in a massage for Grandma Stoddard, who filled in for Mom and Dad for four straight weeks (without, of course, a complaint or thought of pity for herself), and who slept on the living room couch for four straight weeks because she was afraid that she would contaminate our bed with the cold she had--anything to protect Abigail, she must have thought.

We purposely have told no one--expect Grandma Stoddard, who will make sure the kids are home, and Grandpa Stoddard, who is picking us up at the airport. We didn’t want to risk any word being leaked to “the press.”

We were officially discharged from Lucile Packard at about noon. We didn’t know until 9:00 a.m. that we would be leaving for sure today. The conditions for discharge were that she had to continue to gain or at least keep her same weight and one more chest x-ray had to reveal more progress on the upper left lobe of her bruised lung.

Appropriately clad in her Stanford outfit, Abby will forever be a fan of the Cardinal (or at least her Dad will)

Mom's a fan too--notice her outfit

We were told yesterday that the odds for a Saturday discharged look good, but not to book a flight because “these things often change.”

I ignored the instruction not to book a flight, and booked one yesterday anyway. I had been watching the open seats on various flights throughout the week, and by Friday I could tell that most of our good options for flying home were dwindling. So I rolled the dice, and bought two tickets for home.

We had planned to go First Class (something I’ve never been willing to spend money on) but we figured that the extra room and lack of people next to Abigail (who can’t afford to catch anyone’s cold or flu) would be worth paying the extra money for. But as of Friday morning, all of the First Class seats on the flights that made sense were gone, and coach was filling up fast. I specifically chose a Sky West flight because I knew that the plane would have four seats per row, separated by an aisle, so that there would be no chance of a sick person sitting next to the baby. I’m on the aisle and Lisa sits next to the window with baby, protected from the coughs of fellow passengers.

Hold on a moment while I check Abigail’s pulse. Ok, she’s breathing. Funny what you think about when you’re transporting your heart-patient infant back home.

Back to the discharge and the moments leading up to it. Lisa slept with Abigail last night (her upgraded room at 3 West also had a couch/bed for the parents). Yes, I did take my turn the night before, and I wanted to take it again last night, but Lisa wouldn’t let me.

I went home to Menlo Park, slept by myself, and got up at 6:30 to get everything packed up in time to be at the hospital by 8:30 to make sure that I was there when the doctor in charge of discharge made his rounds. By 9:30, the attending cardiologist came in an announced that she was going home! He chuckled as he said that she seemed to have no further problems gaining weight--she had gained more than 100 grams (more than 3 ounces) on Friday. The left lobe of her lung was not perfect, but improving, and there was really no reason to keep her.

I felt a little sheepish asking the next question, “I went ahead and booked a flight--refundable, of course, in case she wasn’t ready to go (I had to add that disclaimer to justify my disobedience). Our plane leaves Oakland at 4:30. Do you think we can be out of here by noon or so?” Fingers crossed. Please tell me we can make that flight?

“Yes, no problem.” With the exception of the statement, “The surgery went perfectly,” those three words were the best I had heard in the last four weeks. We had yet two things to accomplish, and our mission would be a success: figure out how to take 250 bottles of breast milk home, and make our flight.

“Holy Cow--No Pun Intended.”

Those were the exact words uttered (again, no pun intended) by the nurse that went to retrieve Lisa's breast milk from the deep freeze in our unit.  Apparently, Lisa  was a little more prolific than most mothers there.  "And this isn't the last of it," I smiled, "we have about half this much in the freezer at the home we're staying at."

Lisa and I very much wanted to take the milk with us for a few reasons:  (1) we have a bunch of the really good stuff from the first two weeks of milk production that is power-packed with calories, vitamins, minerals, and all kinds of immune system-enhancing stuff; (2) that production represented a whole lot of work--every three hours, night or day, rain or shine, tired or not, Lisa would hook up to the machine; (3) the hospital would just throw the milk away if we left it there.

Now, that's a milk truck. Arin Strom, fellow NICU parent, hauls the milk to our car.

After we got the final word that we were leaving, I left the hospital to figure out how we were going to get the milk home.  It had been one of the primary subjects on our minds for a few days. We looked into Fedex, which would have required a priority overnight shipping, and to ship that amount of weight overnight would have cost well over $400.  We were initially told that we couldn't bring it on the plane with us because we had to keep the milk frozen (once it thaws, you must use it within 48 hours or dispose of it), which required dry ice.  Wet Ice wouldn't keep them milk frozen because milk apparently thaws at a faster rate than most liquids.

Because dry ice is often used in amerture bomb production, we had been told that we couldn't tote it onto a plane.  However, after doing a little research, we learned that we could take it on the plane, but that the package could not contain more than 5.5 lbs of dry ice.  So, we had planned since the middle of the week to just take it with us (and pay for extra baggage, which was a lot cheaper than shipping it Fedex).  Late on Friday evening, I called the airlines to ask another follow up question on the dry ice issue (as I was afraid of showing up at the airport with 250 bottles of milk, only to learn that we had to leave it in Oakland).  It was then that I learned that that the package which contained the dry ice had to be vented.  Vented?  How on earth was I going to find a vented cooler? Who sells a vented cooler?  And if I do find a vented cooler, will those vents cause the dry ice to vaporize.

I had bought two large coolers at Target earlier, which suddenly weren't going to work.  At that point, our plans to take the milk seemed to be in jeopardy. We then began to ask questions about whether we could donate the milk to a milk bank, but that was shot down quickly as we learned that that was a bureaucratic process that would take days that we didn't have time for.  We also asked if we could just give it to some fellow NICU friends who haven't been able to produce as much milk as Lisa.  But that isn't allowed--Lisa's milk could have an infection or other ailment that could harm another, they said.  Tragic, really.  We were about to throw away 250+ bottles of perfect "Mormon" breast milk that could be of such value to another--no nicotine, no alcohol, not even caffeine in that milk, produced from a women with no tattoos and a perfect history of monogamy, not to mention a woman who rarely takes any medicine. Probably can't find purer milk on the market. Did you know, by the way, that human breast milk sells for about $3.00 an ounce?  Each of those bottles contains two ounces, which means that we were also about to throw away $1,500 worth of Lisa's hard earned labor.

Thankfully, another Timpview grad came to the rescue (man, these Timpview people just come out of the woodwork).  A family friend, Mckay Winkel, Jr, who happens to live in Menlo Park, dropped by the hospital on Friday evening to see if he could do anything for us.  I took him up on the offer on Saturday morning.  As I mentioned earlier, I left the hospital after I learned of Abby's discharge to find some type of vented cooler.  I also left to take the car we had used to the car wash to get a mini-detail as a way to express our thanks to our wonderful hostess for opening up her home and her cars to us.

Mckay picked me up from the car wash (as the detail was going to take about 90 minutes of precious time I couldn't afford to lose).  I don't know why it took me so long to think of this, but I found our vented cooler.  Mckay and I went to Target, returned my previously purchased Coleman coolers, and bought three styrofoam coolers, which we planned to drill two 1/4" holes into for venting. We then headed to a U-haul store to pick up packing boxes (to house and protect the styrofoam cooler) and styrofoam peanuts to insulate and hold the styrofoam cooler in place.  Finally, we went to Mckay's apartment to grab a drill with which to drill venting holes into the coolers and the surrounding boxes.  I couldn't have pulled this off without that lift from Mckay--yet one more person who has come to our aid in the last four weeks.

Will We Make the Plane?

Even though we were officially discharged at around noon, we didn't get out of the hospital till just before 1:00--we had to say goodbye to friends, parade our baby around to a few of the nurses, and pack up the car.  On the way to Leslie's house in Menlo Park, we stopped by Safeway to get the dry ice.  I don't know what happened to the time, but by the time we took pictures with Leslie, packed the coolers with the milk, taped them all up, found newspaper in the house to further insulate the coolers inside their U-Haul boxes (I didn't buy enough peanuts), went online to find the mandatory dry ice label that I had to put on the boxes (and dealt with printing issues), it was 3:15 before we pulled out of Leslie's drive way.  Oakland with traffic was 45 minutes away, and our plane took off at 4:30.  We were in Leslie's car with me driving, Leslie in the passenger seat, and Lisa in back with the baby.

Leslie Neumarker, our gracious hostess for three weeks, holds Abigail.

I was now officially worried that we weren't going to make it, or that if we did, our luggage wouldn't, and our milk would go to waste, having to wait another day to arrive.  As we drove to Oakland and encountered unexpected traffic, I started to panic a bit.  I then started thinking about the possible delays at the airport, as the Delta representatives at check-in wouldn't know how to deal with they dry ice issue (every time I called them I got a different answer about it).  I also commented how unhelpful most airline employees are, and figured they would get in the way of us making it.  Oh ye of little faith!

Leslie commented that today the Delta Representatives were going to be especially helpful and kind, and that we had nothing to worry about.  When she said that, I thought to myself, "She's probably right. Every single thing has worked out--on time and on schedule and in the best way possible way--for this entire experience.  The airline just has to be helpful and efficient," I concluded.

And they were.  After rushing into the terminal with four boxes, four carry-ons, and a car seat, huffing and puffing as I walked up the ticket counter, we were greeted by the most pleasant Delta Representatives I've met.  We told them where we were going, what was in those boxes, and how desperately we needed to make sure we all made it.  One of the representatives called someone from baggage over to her desk, and said, "See those boxes right there, they have to get on the plane."

So, here we are.  Aboard the plane, exhaustion settling in.  Mission accomplished. What a mission it has been--a very humbling and spiritually rich four weeks.  And strangely, we feel a small sense of loss for the experience we are leaving behind.  More on that in a final post tomorrow.

It's now tomorrow.  We are home.  The homecoming was glorious.  Daphne just whispered to me, "Dad, I wish Abigail would never sleep. I just want to keep holding her."  The surprise worked, and Mom and Dad shed a few tears.  I'll post one last entry tonight that will contain a few concluding thoughts, pics of the homecoming, and a final video.

Friday, November 13, 2009

Video: Abigail Trying to Wake Up

Before Abigail was born I committed that I was going to slow down with this one, and savor more of her early days. I, of course, had no idea what I was committing to, or how much of her first month I would get to savor. What a joy it has been to watch most of the waking moments of her life: the arches of her back as she stretches in the morning; the gaping yawns; her attempts at latching onto the bottle or the breast; the lower lip that protrudes just as her cry is mounting; her searching, blue eyes that project so much trust and sense of wonder. It's been a beautiful month

I can't wait to get home to savor the Big Four like I never have before.

A Move Back to the East Side

We've been singing the theme song from the 80's sitcom, "The Jefferson's", ever since yesterday afternoon:

"Well we're movin on up,
To the east side.
To a deluxe apartment in the sky.
Movin on up,
To the east side.
We finally got a piece of the pie."

If you're over 35, you probably have that tune in your head right now, and sadly, you may be singing it all day long. I've been singing it since yesterday when whey they moved us from the Supply Closet to a posh "studio apartment"--a single room at 3rd West, complete with private bathroom, bed, recliner, flatscreen, DVD Player, and get this, a Sony Play Station (not that I would even know how to use it, but it's cool to say that we have one).  This place makes the CVICU look like the Motel 6.

3rd West--the less intensive care unit at Lucile Packard--discharged a whole bunch of patients yesterday, and this great room opened up.  So, we're feeling comfortable and relaxed.

Our comfort is augmented by the fact that Abigail had a fantastic day feeding yesterday, and she gained 78 grams in the last 24 hours.  The good eating continues today, so we're less worried.  In addition, in a few moments they will pull the pacer wires that are still attached to her heart.  Again, they just pull those out through the skin. This whole process still amazes me.  Within recent memory, Abigail's heart condition was a death sentence, and today they can do what they are calling a "full-repair"  of her heart. I wonder what they'll be doing in 50 years?

Always contemplative, Abigail ponders the 
benefits of gaining weight.

Thursday, November 12, 2009

Weight Watchers, Move Over: Abigail's Diet Plan

I wonder what is worse:  sitting by the bed of your heart-patient infant, without be able to do anything to be of assistance, or to finally be in a position when you can do something, but not quite sure what you can do to help her, after you've tried all you think of?  We had the latter problem yesterday with the baby's eating.

We came in this morning to the news that Abigail had lost weight compared to yesterday,which really wasn't a surprise based on her lack of eating yesterday.  However, it was still disheartening.  Apparently, Abigail is already concerned about her weight, and has decided to go on a diet. Do you think Oprah would pay big bucks for Abigail's secret?

We were present during the doctors "rounds" this morning, and when the nurse practitioner suggested that we should still be good for a Saturday discharge, I was watching the attending physician's body language,which seemed to suggest that Saturday was up in the air at this point.  In fact, he even added the disclaimer to the nurse's statement--"probably."  Ugh.

Now we have the fun dilemma of trying to figure out when to book a flight.  One option is to wait till we know when we're being discharged, but that might mean that (A) we will get creamed on price by the airlines, whose mission is to take advantage of their customers whenever possible, or (B) that there won't be any room on the direct flights the day (or day after we get discharged). The other option would be to schedule a flight a few days after the expected discharge date, but that seems agonizing--like telling your kids on Christmas morning that you're going to wait till New Year's Day to open presents:  just keep these presents in your room, and don't open them for another week. Throw in the concerns we already have about putting her on a plane with everyone's swine flu and RSV floating in the air, and you can imagine that we have some anxiety about getting back to Utah.  (Of course, driving isn't a good alternative either, as the thought of driving in snow through the middle of nowhere for a very long time with a hospital nowhere in sight, while Abigail labors in a car seat for more than 12 hours is not a feasible alternative).  The insurance company has unequivocally stated that they will not pay for return transport aboard any kind of air ambulance--which I can understand (they're reeling at this point).

They also did another EKG this morning (they did one one yesterday as well) to look at her heart again.  They    reassured us that there was nothing to be concerned about, but that they just wanted to double check the condition of her coronary arteries.  As you will recall, the placement of the coronaries were one thing that made her surgery a little scary to Primary Children's, and was one of the reasons she was shipped here.  This morning the attending physician reminded us of that fact, and said they had to perform a "special procedure" to remove and re-attach those arteries without damaging them. I, of course, am probably reading too much into it, but it seemed like the additional EKG was more than just a precaution, as if  there was something to be mildly concerned about.  Then again, doctors are trained to think in worst case scenarios (especially here) and they would rather double and triple check something rather than miss it.

I'm sure that for quite some time Lisa and I will worry about every sneeze Abigail makes.  In fact, one of the nurses at Primary Children's, who had a child in the NICU for a while, warned me that I would be over protective of this one, and would tend to shed too much attention and provide extra leniency to Abigail--a fact that Abigail (and the other kids) would pick up on.   If you're not careful, he said, your little NICU patient will take advantage of that, and the other four will resent it.  Throw in the fact that she is now "the baby" of the family by seven years and we may have a spoiled one our hands.

So, we'll keep that in mind for the future, but for right now, we have a bunch of people, including four siblings, who are dying to spoil her.  Picture of the day below.

Not much baby fat on this body:  skin and bones!

All bundled up

Wednesday, November 11, 2009

One Step Forward, One Step Backward

I sit her typing, trying to pass the time as Lisa attempts once again to get Abigail to eat.  Today has been a frustrating day, as Abigail has decided that she no longer likes to eat for longer than three minutes at a time.  Or, when she does try to eat, it's as if she's forgotten everything she's learned about latching on.  It's strange.  She'll have one great day of nursing, and the next is a trial.  One step forward; one step backward.

This nursing roller-coaster, of course, gives us great anxiety, as her gaining weight (she's the daintiest non-premie baby I've seen here) is one of the milestones we must pass to get out of her.  I've actually pondered rigging the scales!  As great as this place is, sometimes it feels like a jail cell--that is, a jail cell that happens to be on very expensive real estate with all kinds of great restaurants surrounding it!  So, no, we don't have it too bad.  Of all the places to be locked up in, Palo Alto places first on the list of the Ten Best Places to Serve Time.  Then again, it's not home, and we yearn for home.  Until that time comes, I'll keep typing and Lisa will keep trying to feed our sweet little Abby (just a minute ago, she started feeding her with a syringe).  Good night.

Thank heavens for laptops and wireless internet

Milk Face Moves to the "Other Side of the Tracks"

I've renamed Abigail "Milk Face" for the time being.  She's enjoying the messy part of breast feeding. Check out the raised pinkie--the hand motions are part of all great thinking. Here she is waxing philosophic on the benefits of organic, raw, non-pasteurized or processed milk.

It's dripping everywhere.  Lips and cheeks puckered, she's ready for even more.

Milk Face moved yesterday evening from her posh studio apartment (her own room with private nurse) in the CVICU to "other side of the tracks," 3 West--the place where they send kids who are getting ready to go home and don't need the same level of care or observation.  Her room resembles a supply closet with four beds stuffed into it (do we get a discount for this?).  However, the care is still superb and we're excited to have graduated from ICU into "regular" care as we prepare for home.

As of right now, the docs are predicting a Saturday discharge.  They are still watching the left lobe of her lung that was traumatized a bit during surgery.  Her lungs are functioning perfectly but they want to see the "haziness" that they are seeing via X-ray disappear. Fortunately, the haziness has been gradually improving by the day. They also want to see her gain more weight.  I keep trying to tell them that Reeves' babies just don't gain weight very fast, and that her bird arms and legs are here to stay until adulthood (or until she's 37 and starts ballooning like her father, who, after eating out for a month straight, may be admitted to the fat farm any day now).

Tuesday, November 10, 2009

Video: Big Kids Come to CA

A Prayer for Rocindy and Keeyondra

I've been working on a blog for a woman in the CVICU that Lisa initially befriended (of course, Lisa befriended her--she has a knack for finding people who need friends).  This woman is here with here 2-month old baby, alone and without a camera.  Her husband couldn't afford to make the trip with her.  She has been here for two months. She sleeps at the hospital. No car either.  And as I drive my hostess' PT cruiser home to the three million dollar home I get to sleep in, I do wonder why justice is sometimes delayed in this world.  Life just isn't fair. 

Anyway, her name is Rocindy, and her baby's name is Keeyondra. She is going in for an all-day surgery (the first of many) tomorrow.  I took some pictures and video of her sweet, little girl and made the first video yesterday.  Today, I lent her my i-phone and she took a 6-minute video (which I've been uploading for the last hour via my wireless internet connection here in Menlo Park).  Go check out her blog, make a comment, and keep them both in your prayers:

Monday, November 9, 2009

Three More Tubes Gone, More Nursing, and a High School Reunion

Abigail Update

The nurse commented this morning that it is a rare thing to see a nursing baby in the CVICU who also happens to have no feeding-tube and no nasal-cannula free (the nasal cannula is the apparatus that emits oxygen through the nose).  Yes, three more tubes bit the dust today.  We walked into her room this morning to the pleasant surprise that they had removed three tubes:  (1) her nasal cannula, (2) the feeding tube that ran from her nose to her stomach, and (3) her last drainage tube that they had stuck into her side at the first of last week when they noticed a pocket of air that was impeding her lungs a bit.

Now, there are still a few strings attached (literally).  She has her heart monitor, respiratory monitor, and oxygen saturation monitor attached--all of which show a perfectly healthy baby.  It is still somewhat shocking to say that, especially after her condition was serious and complex enough to have her shipped away from Primary Children's, a more than competent facility.

She also still has two wires that protrude from the skin that are attached to her heart--her emergency pace-maker wires that they have never used. Those will come off just prior to discharge.  I believe that they are lightly sown into the pericardium, the protective sack around the heart, and that they literally yank them out when they are through with them.

So, you might be asking why we are still here?   They will likely check us out of the CVICU tomorrow and put us up on the third floor, where the parents--under the light supervision of a nurse who manages four children at a time)--become the primary caretakers of their child.   At this stage in the game, they want to make sure that the baby is consistently eating and is gaining weight. If all continues to go well, we may likely be discharged at the end of the week.

I mentioned in my last post that we were lobbying for a feeding schedule that was more in line with Abby's schedule.  The staff was very receptive to our opinion and agreed to let this mother of five ad lib nurse Abby whenever the baby was hungry.  Because Abby would never consumer large amounts of milk during a feeding, they would supplement her feeding during the night hours when we weren't here with the feeding tube in her nose.

Nursing took a turn for the better yesterday.  Prior to that, it was an exercise in frustration for the first four days.  Lisa commented that it was like nursing a baby for the first time EVERYDAY. Cardiac kids generally struggle with nursing, and some never take to the breast if they haven't nursed prior to surgery.  Abigail's sucking motion was good, but she was a having a hard time latching on and staying on.  

Thanks to both the Lisa's patience and perseverance, and the breast shield Abigail took a major step forward yesterday, and has been nursing like a regular baby since yesterday.  I have talked to few other moms of cardiac kids, who have spent 3 to 6 months trying before truly succeeding with breast feeding.  I cannot image having what kind of a commitment that would take, but after only four rough days, Lisa and I take our hats off to such amazing women.

Mama burping Abigail after a feeding.  I must say that there are few things more beautiful to me than a nursing baby.  Nature at its best.  Another example of our amazing bodies.  Isn't it tragic that the formula companies in the 50's had--through lots of marketing dollars--convinced the public that breast milk wasn't good enough for their babies.  Rule number one of nature:  you can never truly copy the real thing.

Abigail with ZERO plastic (other than this binkie) on her face. First time in three weeks (since birth).

A Wrap Up of our Visit with the Kids

I'll be posting some beautiful pictures of our last day in San Francisco a bit later. I have to go eat, so I'll save my comments on it as well till later tonight when I post the pictures (and possibly a video).

Timpview Reunion in Palo Alto

My 20-year reunion isn’t until  this summer, but we’ve had a bit of a Timpview High School reunion  at Lucile Packard these last seven days.  One of the treats of being here has been the unexpected visits of old friends (and cousins) from high school who happen to live in the Bay Area.

The Doxey Clan

One night the Doxey’s (Dan and his wife Julie Call Doxey) packed up the kids in the minivan and drove the pj-clad kids late on a Sunday night.

Brigitta (Grimmer) Hair

A few days later, my junior prom date, Brigitta (Grimmer) Hair traveled a similar distance to see us.

Uncle David and Cousin Susan (Hobson) Smith

Yesterday my uncle David and cousin Suzanne (Hobson) Smith came by to visit.

Each visit was delightful and good for Lisa and I who are missing our Provo connections.  Remind me when this is over to be better about visiting friends and family in the hospital. It was great to catch up, and share this tender time with old friends and family.