Saturday, October 31, 2009

The Closing of the Chest

Of all the things that we thought we would be doing 12 days after the birth of our fifth child, eating Turkish food (last night) and perusing the Farmer’s Market in Palo Alto (this morning) was not on our list. It has been said that the only constant in life is change and surprises, and the last two weeks have certainly been just that for the Reeves Family.

Lisa at the Farmer's Market in Palo Alto

We got another good surprise today. We had been hoping that they would close Abby’s chest as early as Friday, but by Friday morning they had pushed it off till Saturday. Though all of her vitals were stable and improving, she was retaining a little more fluid than they would like, and her skin looked a little puffy. They don’t like to close the chest until the body gets rid of the excess fluid that has been built up during and after surgery. Once they close the chest, it actually puts greater pressure on the lungs because they now sit in a tighter, more enclosed space. If there is excess fluid in the chest cavity then that can apply even more pressure, which makes it harder for her to breathe.

On Friday morning they gave Abigail a diuretic to help her pee more off the excess fluid. Since that time, she’s been peeing like a champion, and much of the fluid has left her body. Unfortunately, last night the attending physician thought (as a precautionary measure) that it might be best to give her yet another day to rid herself of fluid, and that they were most likely going to bump her chest closing procedure to Sunday. I was disappointed to say the least to learn that. I am so anxious for her to get rid of the ventilator tube but that cannot happen until at least 24 hours from the moment they close the chest. They keep the tube in after they close the chest, because patients usually take a step backward in breathing because of the added pressure that is introduced to the lungs by the closing of the chest. Until the tube is removed, she has to remain somewhat sedated (otherwise they would go insane with all the plastic in their throat). That sedation unfortunately counteracts the healing process and it prolongs the date that she can begin eating and then breastfeeding.

We left the hospital last night disappointed that we were going into the weekend without her chest being closed. Lisa and I prayed last night that if her body was ready for it that the doctors would not wait for the procedure. We had the same prayer in our hearts throughout the morning.

We arrived at the hospital late today after a stroll through the Farmer’s Market in Palo Alto. When we arrived, our nurse told us as we walked into Abigail’s room (in the CVICU you get your own room) that they were going to close the chest tomorrow. About an hour later, one of the cardiologists entered the room and told us the same thing. More disappointment, but I was trying to temper that feeling, as I had some guilt for feeling sorry for myself after we have received blessing after blessing for 12 straight days. So, we were ready for another’s day wait. Then, the surprise came.

Dr. Reddy burst into the room an hour later, looked at a few of her numbers on the various monitors above her bed, walked over to Abigail, lifted the gauze from her chest, peered into the hole for about 3 seconds, and then announced, in his confident, definitive way, “She’s ready. Let’s close her. Start preparing the room.” The nurses and technicians exchanged confused glances, as if to say, “But I thought that ten other people had already told us that we were waiting.”

The minute Dr. Reddy made the announcement, the staff started moving at an accelerated pace. He’s obviously THE man here, the highest of all authorities in the CVICU. If he says it, no one argues, and they all get to work. One of the physicians who had told us that we were waiting told me after Dr. Reddy left the room, “I guess I’m not the boss here. Sorry for telling you a different story.”

The procedure takes about an hour to perform, much of which is “set-up” time. They actually perform it bedside in the CVICU. All of the rooms in the CVICU are surgery-ready, and they just take care of such things right there. To close the chest, they have to bind the sternum, which has been cut in half from top to bottom. The bring it back together with wire that they wrap around the sternum. Once wrapped around the sternum, they actually twist the wires, which brings together both halves of the sternum.  And then in about five days, the bone is mostly fused back together. Amazing. I suppose it takes longer for the bone to completely heal, as we won’t be able to lift her by the armpits for at least six weeks, because this particular hold will cause quite a bit of pain. But most of the healing is done within days of the procedure.

So, here I sit, content and satisfied yet again by another small miracle in the life of Abigail Rose Reeves. My pessimistic side (which granted isn't much) is beginning to wonder at what point this is going to take a turn for the worse, for we really haven’t had any “turn for the worse” days except for the first 12 hours following the birth.

Today's little miracle caused me to think about how our prayers may have affected today's outcome.  I have thought quite a bit over the last 12 days about the power of faith and prayer--especially the collective power of faith and prayers when hundreds of people join in unison in a common goal for their faith, as they did for Abigail.

One of my worries during the early stages of this experience was for people’s faith. My greatest fear--as odd it may seem--was not necessarily that Abigail was going to die (though that certainly was a significant fear), but instead was centered on the effect it might have on people’s faith if she did indeed die. I have learned over the years that sometimes our faith and prayers don’t always seem to affect the outcome of certain events in the way that we want them to. I knew that we had more than a ward’s worth of people fasting (including many children in the junior primary under the age of 8). In addition to that, I had co-workers, cousins, friends, and people we’ve never met before earnestly praying and exercising their faith, fasting, and praying for Abigail and our family.

I desperately wanted that faith to be rewarded--or at least rewarded in the most obvious way (faith never truly goes unrewarded). I didn’t want people to be disappointed that their faith “may not have been enough.”

I remember going through that thought process at Primary Children’s and feeling some anxiety about it. I recall sitting alone in the Cafeteria at Primary Children’s, thinking about this subject, and feeling the anxiety that I’ve described, when suddenly, I had this thought, “Jeff, if you will just surrender, you and everyone else fasting and praying will have peace regardless of the outcome. If you are really willing to trust me, your faith will be rewarded.” As that thought came, my anxiety left, and for the first time since her diagnosis I was willing to accept any outcome, and knew that no matter what happened, that our faith was going to be rewarded in His way. I will be the first to admit that the pendulum of my willingness to trust Him completely and to surrender completely during this process swung back and forth throughout the process. But, such is the case with our faith--we often take two steps forward and one step backward (and sadly, sometimes two or three steps backward).

Abigail’s chest closure today was another answer to a prayer, another little miracle, another reward of faith. After Dr. Reddy changed the direction of the day on a dime, I thought again about how faith affects the outcome of the good things that we desire. As I was mulling over the subject for the umpteenth time since Abby was born, I had the following, sort of conclusive thought on the subject:  if the outcome that we are fasting for is what God wants then our faith can expedite the miracles we are fasting for. Let me try to develop that idea further.

One might ask, “If God’s will is going to be done regardless, why bother exercising faith?” I have two possible answers. One is that praying is for the prayer and fasting is for the faster. But while it is certainly true that the person praying often benefits the most from the prayer, I believe that answer is incomplete. The scriptures and my personal experience (especially in the last few days) is full of examples of how prayer actually, physically alters events and changes outcomes. Therefore, the second reason that God want us to exercise faith in a specific cause is that His will can better be accomplished when coupled with the faith of righteous people. Now, I realize that I’m treading on thin ice when I talk about God having any need for our faith. Additionally, know this disclaimer--this is the gospel according to Jeff, and nothing more. But here are my thoughts on the subject. God wants lots of things that don’t happen. He wants His children to obey His commandments. He wants them to listen to His prophets so that they can stay far to the right of the line of safety. He wants so much for us, if we will only exercise the faith sufficient to accomplish His will.  But unfortunately we don't, and so His will for us sometimes doesn't come to pass.

One final thought on the subject and I’ll stop blabbering on. As we were uncertain about the outcome for Abigail, and as we prayed for the outcome that we wanted, we had to consider the possibility that what we wanted wasn’t necessarily what her Heavenly Father wanted. I wondered during that time of uncertainty why it is that God wants us to pray for things that may not necessarily be His will. Why doesn’t He just tell us what His will is upfront so that we know what to pray for? I realize that he will reveal His will up-front on some occasions, but on many occasions he doesn’t. I believe that is because he wants us to pray for good things, regardless of whether it is His will or not. And praying for Abigail’s recovery was a good thing. It made a difference in the quality of people’s lives. And regardless of the outcome, the effort--if people would allow it to--would make a very positive difference in the lives of those who prayed for her.

There is so much to be learned from praying, fasting, and exercising faith when you are uncertain about the outcome of the thing you’re praying for. I believe that God purposely lets us be in the dark as to the outcome of such things because he wants to teach us how to trust Him. I trust him now more than I did 12 days ago. Hopefully, I won’t forget that 12 days from now, as we frail humans tend to do.

Good night and Happy Halloween. This the first Halloween that we haven’t trick or treated for quite some time. Our spirits our high, but we miss our four little trick or treaters back home. If you see them, hug them for us (and tell them not to eat it all in one night).


Jeff, eating yet another fruit tart at Andronico's.  So much for the diet! 
But how else is a guy supposed to deal with all the stress? (i.e. any way to justify indulgence)

Friday, October 30, 2009

Video: Abigail, Awake After Surgery

I actually got this video done sooner than I expected. Enjoy.

Sixth Update from Jeff

We are almost 48 hours since surgery ended, and Abigail is stable and doing well. Her chest remains open, and will not be closed until tomorrow, Halloween. This wasn’t exactly the Halloween Party we had planned, but we’ll take it. Although she won’t be able to wear that cute orange and black Halloween tutu that we had bought her that sits at home in her empty nursery, we are grateful that this Halloween party at Lucile Packard will be about her continued recovery. The sooner they can close the chest, the sooner she can get the ventilator and other tubes out of her body. That sooner that happens, the sooner she can begin to eat.

One of the concerns with infants who go through this kind of an ordeal is that they often won’t breastfeed after the experience. The longer they go without having to exercise the sucking motion, the less likely they are to expend the energy to get mama’s milk later. The various tubes in her mouth and nose can irritate and make the throat sore, which makes eating unattractive to many infants in similar situations. Dr. Reddy was relieved that Abigail did seem to take the bottle and pacifier between birth and surgery. She wasn’t ever allowed to drink much milk at any given time, so we still don’t know how well she’ll take to eating, particularly breastfeeding, but we’re crossing our fingers.

Below is a picture of Dr. Reddy and me. Apparently, he gets embarrassed in front of a camera, and when I asked him if I could get a picture for Abby’s scrapbook he began to object, but I couldn’t understand what he was saying through his thick Indian accent, so I basically ignored the objections and continued to grab my camera out of its bag. He said, “We’ll do this when all the tubes are out,” which I thought meant, “You can take a picture of Abigail when all the tubes are out.”

“No, it’s okay,” I "reassured" him, “I want a picture of you, not the baby.” He kept objecting but I ignored him, confident that I didn’t need his permission to take a picture of my baby. I grabbed the camera, then handed it to the nurse, and told this world-renowned Chief of Cardiothoracic Surgery at Stanford exactly where I wanted him to stand for the picture: excuse me, Doctor, would you turn your head slightly to the left?

By this point, he had surrendered, probably realizing that resistance was futile. It wasn’t until after he left the room that the nurse, smiling, told me that Dr. Reddy gets embarrassed in front of a camera, and that he was trying to communciate that he would like to take the picture when “he is prepared for it” and when he can hold Abigail for a pose in front of the camera. I’ve been chuckling ever since, which, of course, makes this photo all the more memorable for Abigail’s scrapbook.



I’ll update you tomorrow with details on the closing of the chest. I may throw up a new video tonight of Abigail awake in the her home at the CVICU, which I've decided to rename the HICU (the Heart Intensive Care Unit as opposed to the Cardio Vascular ICU) as it's much easier to say like the NICU. I also may elaborate later on an unexpected and strange feeling of melancholy that Lisa and I had following the surgery.


The amount of equipment needed to take care of one baby

Thursday, October 29, 2009

Mom, Why Are They Doing This to Me?

Is this not the most pitiful photo you've seen so far?  Abigail has been heavily sedated, but they're slowly pulling her off of it, as they try to balance the necessary amount of sedation, because in some ways it counteracts the healing process.  She is not in pain, but she is somewhere between awake and unconscious. At this moment, her eyes are open, and she seems to be asking, "Mom, why are they doing this to me?"


Surgery Day Recap

Wow!  Where do I begin? How about with the present.  After that we’ll rewind the day and share with you how things unfolded today.

I sit in a comfortable chair in our second story bedroom in this cozy yet well-sized English Tudor in lovely Menlo Park, CA, looking at my beautiful wife who just barely gave up for the night. She is resting peacefully--I think--in an antique bed with a thick down comforter atop and a mattress that I believe tops all mattresses.  My friend, whose mother’s home this is, calls this bed a “drug” and now I know why.  I suppose you could also chalk it up to sheer exhaustion, but we have slept well since we first arrived.  Lisa’s hasn’t slept more than four hours at a time, and I probably haven’t slept more than six, but those four or six hour increments have been characterized by deep sleep.

I am so happy that Lisa is sleeping. About 6:15, she hit the wall.  Adrenaline, anticipation, the spirit--all of that has given us energy since last week.  As soon as we got the good news today, the adrenaline started wearing off, and Lisa’s body said, “Ok, now it’s my turn. I’m shutting down.”  I was happy to see that.

An Early Departure to Hold our Baby

That was at about 6:15, as we sat just outside the Cardiovascular Intensive Care Unit (CVICU), while a team of about 10 people got Abigail situated into her new home.  Exhaustion had set in, and Lisa was just about down for the count; however, she knew that she still had one feat to accomplish before she completely called it a night, and that feat was to go see her baby--post major surgery, which, for any mother who has beheld her child just after open-heart surgery will attest, is a feat that requires significant energy.  So, she flipped the tank to reserve, and garnered enough energy to make it through that experience--an experience I will get to momentarily.  First, let me lay out the chronology and thoughts of the day.

We pulled out of the driveway while the stars were still out--about 5:20 a.m.--so that we could have ample time to be with Abigail before surgery.  Some of you have seen the video of Lisa and I holding her and her bundle of blanket, pad, and cords.  I wish that I could properly express what that felt like.  It was really the first time that either of us had held her.  Lisa hadn’t really held her in the delivery room; the concerned nurse had just held the baby up to Lisa’s cheek for about 30 seconds, and then whisked her away.

I promised myself as I held her that I would never forget what this felt like, and that four months from now when she awakes in the middle of the night, screaming, and mother’s milk won’t calm her that I would be patient and hold her with that same love.   I also thought about Samantha, Jeffrey, Daphne, and Emma and vowed that I would hold them with the same kind of love (although, somehow I don’t know if the teenagers would appreciate that, but at least Daphne and Emma will).

At 7:30, they rolled Abigail in her NICU bed to operating room, an experience I described in a previous post.  I also described how the day went, and that we had met Dr. Reddy for the first time this morning.  It may seem odd to some that we would meet the surgeon of our daughter’s heart 15 minutes before surgery but you must remember that we had consulted with multiple cardiologists at Primary Children’s, and that all of the diagnostic work took place there, and that we asked and receive answers to all of our questions regarding Abigail’s surgery in Salt Lake.  There were no surprises once we got here, and we felt no need to consume any of this terribly busy man’s time.

Heroes and Friends We Met Today

I have already described our feelings while we waited.  Strange, really.  The hours moved by quickly and peacefully. That was partly due to the fact that we met some of the most pleasant and caring people while we sat in the Family Waiting Room. One mother, whose son was in for eye surgery, had written down her home and cell phones numbers within three minutes of learning why we were there.  She asked us to call her if we just needed to talk, or needed a nice meal, or just wanted to sip coffee together (no, I didn’t get into the word of wisdom discussion).

We met another kind woman who was sitting across the room from us, and seemingly out of nowhere asked, “Are you Abigail’s parents?”

We nodded, a little taken aback.  “Yes,” we responded curiously.

“I was just reading your blog, saw your pictures, looked up and there you are!” she said.  She was in with her son, 21-month Owen Simmons (www.owensheart.com--check out her blog; this kid is perhaps the cutest boy you’ll ever see).  Owen is much more sick than Abigail, and was born with essentially half a heart.  After multiple surgeries, his heart continues to fail, kept alive by medicine and by a permanent oxygen tank that his mom totes around.  He hopes to get a heart transplant soon before his heart fails.

Owen’s mother, Andrea, had heard about us from another “Heart Mom”(a community I didn’t know existed 10 days ago) who is a neighbor of my business partner.  This Heart Mom is Summer Strickland of Highland, Utah, whose boy, “Miracle” Mason, finds himself in the same fight for a transplant as Owen (miraclemason.blogspot.com).

These two families have dealt with far greater anxiety and uncertainty than we probably ever will with Abigail’s condition, and yet they continue on, probably incurring debts that may take a lifetime to repay, hopeful for a miracle, savoring every breath of life their sweet boys take.  Andrea’s doctor advised her to abort Owen when they learned pre-natally that he had half a heart.  He told her, “You can always have more kids.”  She didn’t abort.

I asked Andrea if the uncertainty and the possibility of losing Owen was worth the price they paid each day, as they sacrificed almost everything trying to find a way to heal  him.  I knew the answer before I asked it, but for some reason I wanted to hear her say it.  I needed to hear her testimony.  She responded as honestly and sincerely as one can, “Absolutely.  I wouldn’t trade these last 21 months for anything.  Yes, it’s worth it. No question.  It does get harder the more he grows, but I wouldn’t trade those moments for all the world.”

I had asked myself the same questions a few times during the last 9 days.  What if Abby dies?  Would it have been better if she hadn’t been born?  Are these few days worth the pain that will linger far longer than a few days?  Yes.  Yes.  And yes.

Each time we kissed her head or her belly, or rubbed our hands over her perfectly smooth, clean, unblemished, baby skin, or stared back into her blue, searching eyes, I knew it was worth it.  Every time I saw her binky (pacifier) bob up and down as she sucked away, or every time I heard her raspy cry, I knew it was worth it.  I am grateful tonight that it appears that I won’t have to ask “whether it was worth it” but even still, had we drawn a different straw, I know it would have been.

Before I complete this thought, let me say that hospitals bring out the best in most people.  We ought to get all the tyrants, dictators, presidents, and terrorists together for a week’s stay at a Children’s Hospital.  We just might solve the world’s problems that way.  My heart has grown three sizes this week (watch out, Grinch) as I have been the recipient of so much kindness, and as I have learned of the stories and illnesses that so many other families face.  I’ve had a crash course in what matters: love, genuine concern for others, service.  Everything else is secondary.

Post Surgery:  The Smile That Said it All

About 3:00, we received a page from the Family Surgery Waiting Room, signifying that the surgery was soon to be completed, and that we were to return to waiting room to await a consultation with surgeon.  When we arrived, we were told to wait in the Consultation Room, a room where families learn of the failure or success of a surgery.  I can only imagine how many payers have been said in this room, how many tears have been shed, or how many embraces have occurred in this room.

Now the nerves started. Even though we had received an update about three hours earlier from the operating room that “things were going well” we still waited with anxiety.  I could feel my heart thumping in my chest, hoping and praying that Abigail’s was thumping as well.

Just after 3:30 p.m. one of the members of the surgical team poked their head into the consulting room.  She was smiling.  Suddenly, “the moment” I had thought would send me into a panic, didn’t.  It happened too fast.  We didn’t have to watch the surgeon approach, as we tried to read his facial expression.  Lisa and I had joked throughout the last few days, in anticipation of “the moment”, that we were going to ask the surgeon to just text us “thumbs up” or “thumbs down” and be done with it.

The smile gave it away, and suddenly my heart felt lighter.  “She’s off the bypass machine, her heart is beating strongly, and everything went perfectly.”  Joy.  Pure Joy.  Relief.  Gratitude.  Humility.  Those words describe the emotions we felt after we heard those words.  She continued, “Dr. Reddy is just finishing a few things on the surgery and he’ll be in to see you in about 45 minutes or so.”

She left. We closed the door.  I knelt as Lisa sat (kneeling isn’t kind to recovering mothers).  I thanked Heavenly Father for saving Abigail’s life, for providing such competent care, for allowing medicine to advance the way it has.  I also prayed for our children at home. I prayed that they would understand the significance of this; I prayed that they would feel the Holy Ghost tonight.

Post Surgery:  Dr. Reddy

Dr. Reddy came in about an hour later.  We didn’t mind the delay.  We had plenty of people to text and call with the news.  He walked into the room, also smiling.  He’s personable but efficient in his communication.  He exudes the confidence that his work has given him.  Yes, he is the Michael Jordan that isn’t afraid to take the last shot.

Prior to the surgery, he told us that the most tricky part was going to be to patch the various holes in the septum (the “wall” that separates the left and right atriums and ventricles).  The fact that there were numerous holes was a bit of a surprise to me.  I had only thought that there was the major one in the ventricles along with the one they had ‘created’ through the catheterization.

Dr. Reddy reported that he patched all of them, with the exception of a few microscopic holes that will fix themselves as the septum grows and thickens.  Moving the Aorta and the Pulmonary Arteries was no problem, and fixing the narrowing in the Aorta was easy, he said.  Easy isn’t a word that I would use to describe it, but then again, I haven’t operated on a heart the size of a grape in a 1.5 pound baby.

He commented on the fact that her valves were “very strong” as they had been watching the heart pump for nearly two hours at that point, and the valves were working beautifully.

I had written down a list of questions I was going to ask him to ensure that we left the hospital tonight with every relevant and important question answered.  He answered most questions before I could ask them.  On my mind were the following questions.

He told us that he left the chest bone open to allow for the heart, which may swell from the surgery, and need ample room to recover.  Apparently, I had miscommunicated the process here. They do not sew the skin back together if the chest cavity is still open, as I described last night.  They actually just leave it open with a protective covering over it. So, as we speak, Abigail’s insides remain open to the world.  They will likely close the chest on Friday or Saturday.

He said that if all goes well, recovery will likely take two weeks.  Two weeks.  Amazing how fast the body can heal itself form such an invasive surgery. He said that after discharge, they like patients to “stick around” for a 3-4 days just in case, and to be close in case complication arise.

Dr. Reddy said that the odds of Abigail needing another surgery are about five percent.  Sometimes the pulmonary artery doesn’t expand the way it should after such a procedure, and that would cause one to fall within the 5% group needing additional surgery. I like those odds.

A Visit to Abigail

Finally, I return to our visit to Abigail.  Andrea, the mother of Owen, the heart patient I discussed earlier, has warned us that we would likely be horrified at the sight of our daughter after surgery.  As you can see in the picture below, Abigail finds herself covered in cords. She has multiple tubes going in and out of her body. Some are measuring her blood pressure both in the heart itself and it other parts of the body. Another is taking her temperature, while another feeds her.  And yet another give her nutrition.

The sight was a little much for Mama to witness.  I was fascinated and energized by it all.  The tubes and machines were an example of the miracle of modern medicine at work.  On the other hand, Lisa had a hard time getting past the tubes protruding form her chest cavity, draining fluids form her body.  Or the pace-maker wires sticking out of her chest--just in case they needed to provide the heart with a little electricity.  For mothers who love their kids more than a father could ever imagine, the sight was too much.  For the first time in nine days, Lisa was anxious to leave Abigail’s bedside.

As I mentioned earlier, her chest cavity is still open.  Some type of plastic with a mesh structure sewn into it, along with a bunch of “dressing” are protecting the insides of her body from infection.  A large piece of gauze rests on her chest, hiding the hole. The nurse removed the gauze, and I could see the small portion of the heart--beating away!  I thought about taking a picture of the open chest, and then decided that I wasn’t that calloused.

She rests perfectly still, sedated with the ventilator tube back in her throat by design so that hey can do all the breathing for her and take any extra strain off the heart.




Lisa’s Body and Spirit Had Enough for the Day

As I mentioned, Lisa couldn’t witness the sight of her daughter, tubes coming and going from virtually every direction.  I took her home (that’s how comfortable our accommodations are--we are calling it home), and tried to get her to go right to bed.  She pumped, and then ate some soup and bread that our hostess had prepared for us, and then went to bed, where she rests comfortably now.  I hope she is dreaming happy dreams, and that her last image of Abigail is not on her mind.  Her body is overdue for rest.

What Now?

I don’t really know other than that the next step is for them to close her chest this coming Friday or Saturday.  We will now sit by her bedside and watch her young, strong, female body recover like a champion.  Another miracle.  I will continue to post updates as interesting events occur.  Good night.

Wednesday, October 28, 2009

Success!

We just heard from one of the doctors on the surgical team that Abigail is off the bypass machine, her heart is beating strong, and everything went perfectly!  Dr. Reddy is just finishing up the surgery and will be visiting with us in about 45 minutes.  More details of our meeting sometime late tonight.  Break out the glasses.  Seven-up on me!

Waiting Game

It is 12:00 p.m. at Lucile Packard.  At 7:30 this morning, they rolled Abigail from the NICU to the operating room.  We walked with her and the anaesthesiology team to just outside the door of the operating corridor, where we were lead in one direction, and Abby continued on in another direction. 

The walk from NICU was brutal.  I tried to be a tough male and hold back the tears, but that didn't last too long. I tried to not look at Abigail or Lisa, because both faces would bring me to tears.  However, I couldn't help it--the pull was too strong. 

Abigail was peaceful and awake as she was rolled to surgery.  Her eyes were open, searching, as she seemed to take it all in.  After we parted, they checked us into the Family Waiting Room, gave us a pager, took our cell phone number, and told us to get comfortable. 

Dr. Reddy went into surgery at about 9:00 a.m.  It has been three hours now. The surgery is supposed to take five to six hours.

We met Dr. Reddy for the first time just before 9:00 a.m..  He's a pleasant and warm man. He seemed confident and eager to perform the surgery.  As I met with Dr. Reddy, I had the same feeling of peace that I have had after and during every single consultation with a physician going back to our time at Primary Children's.  I continue to be amazed by that. 

Dr. Reddy said that the odds of a sucessful surgery were 95%.  I like those odds.  We were just given an update as I type this post.  Surgery called the waiting room to report that things were going well.  How kind of them to take time to do that.  I have been so impressed that at Lucile Packard and at Primary Children's the care-givers have been so sensitive to the parents.

So, here we sit, waiting for more information.  It is such a surreal feeling.  Lisa and I had looked to this moment with some terror. Prior to today, the thought of sitting here, waiting--particularly "the moment" the Surgeon comes to report on the outcome of the surgery--seemed simply agonizing.  I'm sure "the moment" will still be agonizing, but for now we are at peace, which we know is the result of hundreds of prayers and fasts in ours and Abby's behalf. We love you all for that.

Present to Abigail

One of Abigail's siblings made this beautiful doll house for her.



Video: Mom & Dad Hold Abigail for First Time

Tuesday, October 27, 2009

Final Thoughts Prior to Surgery

Quiet Day for Abigail

I’m sitting  here at Abigail’s bedside. She’s has had the quietest “all-natural” day yet. By all natural, I mean the quietest day while not under some kind of sedation.  Of course, it’s 8:18 pst, and she’ll likely be up for the evening in about an hour.  It’s quite funny, actually.  We have had the sweetest nurse, Bridget, a mother of three who you can tell has had years of doing this. She just has the touch.  She keeps volunteering to take care of Abigail each day, and she’s been on duty for the last three days.  But curiously, we haven’t had anyone volunteer for two consecutive night shifts with Abby!  Apparently, the drugged babies are much  easier to take care of as opposed to the un-sedated, hungry babies.

They are giving Abby about 10 Ccs of milk every 3 hours.  She is receiving most of her nutrition from the IV that is inserted into her belly button.  The doctors understand the benefits of breast milk (so much so that mothers who pump receive a meal voucher for the cafeteria as an incentive to pump), so they have been slowly introducing the milk into Abigail’s diet.  However, they don’t want to give her too much because they are afraid that having to digest too much food will consume valuable oxygen.  She, of course, can’t nurse for the same reason--too much hard work!

A Description of Tomorrow’s Surgery

The faint of heart may not want to read the following entry.  But for everyone else, you may find this fascinating.  We met tonight with the surgeon’s assistant (we haven’t yet met Dr. Reddy, which to me is a good sign--if he were terribly concerned about the outcome, perhaps he would want to meet us prior to the surgery).  His assistant explained the procedure. I will give you my English-major, mortgage-banker, laymen’s version of it.  For anyone with a real grasp of the vocabulary and anatomy of the heart, please feel free to correct me (or just don’t tell me and let me go on thinking that I’m smart--after all, I did stay at a Holiday Inn Express last night).

They will begin my making an incision into the skin which will expose the sternum.  They then take a saw and cut down the middle of the sternum (I assume from top to bottom).  I also assume that they do this so that they can open the rib cage to gain access to the heart.

The first thing they will do in relation to the heart is the open the protective sack around the heart, the pericardium.  Once inside, their first objective is to remove the blood from the heart and stop it from beating.  What??  Are they crazy?  They are going to stop her heart from beating?  It actually never dawned on me before three ago that they would need turn the heart off to fix it.  I guess not doing so would be analogous to an auto mechanic trying to repair an engine while the car’s on.

They call that a heart-bypass, a term I’ve heard for years, but have never took a second to understand what it really means.  They will hook a machine up to the valve in her heart that lets new blood in from the brain and body. That machine will then take the blood before it gets a chance to enter the heart, and then run it through a mechanism that oxygenates the blood, replicating what the lungs do.  This heart and lung bypass machine essentially takes the place of the heart and lungs during the surgery.

Once the blood is removed from the heart, they will then actually give the heart some type of tranquilizer that stops it from beating.  Abigail will forever be able to say that her heart has skipped a few beats!

With most of the blood, pumping, and beating out of the way, they can they begin their tedious work of moving the aorta, pulmonary artery, and the more complicated, delicate, and risky procedure of moving the coronary arteries--without which the heart would not receive its supply of blood to keep it alive.

They will use pieces of the pericardium--that protective sack around the heart--to patch the two holes in her heart.  At the end of the surgery they will likely sew in (very lightly) some temporary, tiny pace-makers into the pericardium. They do this as a precaution because sometimes the electrical systems of the heart are damaged during surgery, and they would use those pacemakers to stimulate the proper electrical flow in the heart after surgery in case of an emergency.  Those pacemakers actually protrude through the skin and once they are sure that they won’t have to stimulate electrical flow in the heart, they will “simply” pull these tiny pacemakers through the skin and dispose of them.  Amazing.

They may also leave the sternum “open” for a few days after surgery as a precaution.  That means that they purposely won’t “put it back together” which allows the heart more room to heal, and makes it more conducive to re-entering for surgery if they go have go back in due to an emergency.  In this case, they would just sew the skin back up, watch things for a while, and then--usually bedside in the NICU--they would open the skin back up and  fix the sternum.  They do that by binding it together with some type of wire, which allows the bone to fuse back into one piece.  Again, amazing.

I find these details fascinating. Even though I am as protective a father as they come (boys, I know what you’re thinking, so stay away if you value your lives).  I don’t want anyone to harm a hair of my daughters’ or son’s heads.  But tonight I am grateful for what might seem on the surface as a violent act with the saws, machines, and scissors.  I am grateful tonight for modern medicine and for doctors, nurses and surgeons who sacrifice much to take care of my little girl.

Musings from Palo Alto

The Consent

So far we are still on the schedule for tomorrow. We should be meeting with the surgeon some time today to sign the consent form.  I’m suddenly getting nervous as I write this.  I wonder why.  Perhaps the magnitude of the consent is hitting me:  “Here you go, Doc; her life is completely in your hands.  Please don’t play any sports tonight, stay up too late, or take one too many drinks.  And please measure twice before you cut.  If you’d like, I’d be happy to pay for a hand massage sometime tonight.  And thank you for not cracking your knuckles like I have for 30 years (isn’t that supposed to give you arthritis?).”

We know we’re in great hands--physically and spiritually--and it will be a pleasure to sign the consent.


Is there anything better than a cacooned  infant?


A Tribute to a NICU Mom

Ok, I’ve said it before, and I‘ve thought I’ve mean it before, but I had no idea what love meant until I’ve witnessed how Lisa has handled this whole deal.  Perhaps it’s the fact that such an experience forces you to break life down to its simplest elements.  The periphery disappears, and the meat and potatoes of life emerges.  As I have focused my thoughts, faith, and prayers on this baby, on our four children at home, and on dear friends that are enduring their own trials, I have learned to appreciate Lisa with such greater depth.  Our talks are more free, more open, more contemplative, more patient.

We went to Walmart today, and for the first time that I can ever remember, I enjoyed being at Walmart.  At this moment I am out in the hallway typing this post, and she is in the NICU with Abby, and I miss her.

Let me give you an idea of what it’s like to be a NICU Mom.  You have just endured 9 months of discomfort, and pushed a 7 pound baby from the womb, only to have 30 seconds (if that) of time to hold the fruit of your labor (pun intended).  You don’t get to hold your baby because there is an IV and another tube inserted into her belly.  In fact, despite your motherly instincts, and even though you have manhandled four other infants, you are somewhat hesitant to touch her, and for the first while you always look to the nurse for approval.

Every three hours you  head into a cubicle, and hook both breasts up to a machine that pumps your milk into little plastic bottles, which you then label by date and time and stick into a freezer.  You do this eight times a day, and through the night, setting your cell phone timer at three hour intervals.  During the night you try to do all of this in the dark so that you don’t wake your snoring, slumbering husband, who has worked half as hard as you have.

Despite the fact that you have been up two or three times during the night (depending on whether you went to bed before or after midnight) for periods of 30 minutes at a time, you wake up your husband early so that you can get to the hospital in time for the doctors to make their rounds.  You want the doctors to know that you’re anxiously awaiting their care, and you want them to know that you care.

During the day--when you should be lounging at home in bed or on the couch--you sit at your baby’s bedside, while your ankles remain swollen from childbirth and from the lack of having your feet appropriately raised.  You sing that baby lullabies, whisper baby talk into her hears, place your hand firmly on her head, and kiss her belly every now and then.  When the baby cries, your instincts tell you to pick her up, hold her close, and nurse her.  But for now, you follow the nurse’s lead in sitting her up, patting her bare back, and feeding her the “appropriate amount” of your milk only at certain intervals.   At times, you wander over to other parents across the room to strike up a conversation, to learn about their child, and to make sure they’re doing okay.


During the day you sneak in a nap at the hospital or back at the lovely home of your hostess, but the naps are not totally restful because your baby is ten minutes away.

Late at night your husband pulls you away, telling you that the best thing you can do for your baby is to get the appropriate rest and nutrition.  Your heart sinks because this baby is a night owl, and she has always--from the time she first started kicking the inside of your tummy--woken up at about 10:00.  It kills you to leave your baby while she’s awake with her blue eyes searching for her Mommy.  You know she’ll be hungry soon, and you wish you could calm her cry.

And yet somehow, despite all of this, your body seems to miraculously heal itself, and your post-delivery condition continues to improve, methodically day by day.  You count this as yet another blessing of this life-altering experience, and you express even more gratitude to your heavenly father.

There you go--a day in the life of a NICU Mom.  How do I love her?  I can’t possibly count the ways--there are too many.

The best sale I ever made


I Could Live in Palo Alto

Yes, I could live here.  I’m sure I couldn’t afford it, but I wouldn’t mind living here.  Where else can you get a salad from a salad bar at Safeway that is better than what you will find at any restaurant in Utah.  I suspect that it’s never too hot here, and thought it may get chilly, most jackets would provide ample warmth.  The trees and greenery are thick, the homes beautiful, and the streets are windy.

Where else can you get a ready-made meal at a supermarket that actually tastes good and healthy.  One of the treats that we’ve discovered is a supermarket called Andronico’s, just a minute from the hospital.  It has a cheese assortment that would rival anything you would find in Paris--there must have been a hundred different kinds of fresh cheese on display.  Then there’s the olive bar--yes, a bar devoted specifically to many different kinds of fresh olives.  Then there’s the pastry section that would compete with any good European bakery.  For the last three days, I’ve had the delightful fruit tart at Andronico‘s--which has the perfect cream (not too sweet and not to bland).  Beyond all that, there is a soup bar with six different homemade soups, a deli with a dozen different kinds of Paninis, and a plethora of cheeses and meats from which they will create your own custom sandwich (which puts Subway to shame).  None of this is cheap, but it sure beats Mcdonalds.

Though most of my time in Palo Alto has been spent within the walls of Lucile Packard Children’sHosptial, we’ve had enough of a taste of the area that we decided we’ve like to spend more time down there.  So kids, keep studying, or working out at the track (Stanford may be a great place to go to school).


The Pastry Bar at Andronico's.  With this place in town, 
how do you expect me to drop the 20 pounds I'm trying to lose?


The Man in Charge

Lisa’s Dad emailed me the following picture this morning.  In light of tomorrow’s surgery, I thought it would be appropriate to give credit where credit is due:



Monday, October 26, 2009

Fifth Update from Jeff: We have a Date

It's Christmas early in Palo Alto.  Or atleast it feels like that.  No, it's not snowing--it's still a lovely 70-some odd degrees with blue skies.  Our early holiday has to do with this:  after a morning of sulking becuase we didn't feel like we were progressing (I know, how quickly we forget and start feeling sorry for ourselves--go ahead and slap me), we were told this evening that Abigail is slated for surgery on Wednesday!  However, the physician who informed us of the good news added this disclaimer (and she repeated herself to make sure that we understood exactly what she was saying):  surgeries often get postponed or bumped because of greater emergencies, the patient's condition, or because the surgeon's favorite football is playing that night (ok, I'm kidding about the football part; although, it that were the case, I would hope that the surgeon was a BYU fan because he wouldn't have any reason to watch the second half, but I digress . . .). 

The announcement came as quite a shock to us, as just yesterday we were told that we wouldn't even show up on the schedule for more than 3-4 days (notice how quickly things can change in this world).  Looks like the Ward fast is already working it's miracles.  We don't know what time on Wednesday yet but we are at least on the schedule for Wednesday.

Our Surgeon

Dr. V Mohan Reddy from India, the Chief of Pediatric Cardiothoracic Surgery at Stanford, will likely perform the operation.  We were pleased to learn the following about his bio:

"Renowned for taking up rare and challenging open-heart surgeries, Dr Reddy created history in 2005 by conducting an open-heart surgery involving an arterial switch on a three-week-old premature baby weighing 700 gm. 

Surgeons called it 'miraculous' as the heart was about the 'size of a grape and the tissues were like pieces of paper'.

The youngest infant he has operated on was two hours old and the smallest, about 640 gm. 

A heart the size of a grape?  Surgery on two-hour old infant?  Are you kidding?  As you can imagine, we're feeling pretty confident about this man.  It sounds like he's the kind of guy that wants to take the figurative last shot.  I think he must wear a large S under his surgical gown.  No pressure, V.  

That's it for now.  I'll leave you with a intimate photo below.



Yep, the plumbing works.  Dad traditionally changes the first 
diaper in our family.  After 9 monthsof discomfort, that is my punishment.
Actually, it's usually a pleasure. Today it was.

Video: Priceless

The Ward Fasts

I forgot to thank the Hillcrest 8th Ward for the special fast they held for Abigail today.  We continue to feel the effects of all of your faith.  Thank you, thank you, thank you.  The primary president, Jana Kofford, commented that many of the junior primary had fasted for Abby. I know that Emma was one of them. 

I fasted today as well, and I will say that is the first 24 hour fast I have done in a while (I'm usually just a two meal kind of a guy, who sadly doesn't stretch himself too much in this regard).  Not surprisingly, this was one easy, and I wasn't rushing to fridge when hour 24 rolled around.  In fact, I kind of didn't want to eat, as I was enjoying the spirit of the day too much. 

Lisa is a nursing mother (or shall we say, a pumping mother) who can't afford to fast, as she has to produce milk every three hours (they want her pumping at least 8 times a day). But even though her stomach wasn't into it, her heart was.  Good night.

Jeff

Fourth Update from Jeff

It was a quiet Sunday in Palo Alto. I went to Sacrament meeting, and Lisa stayed with the baby. After church, I took a meditative drive through Stanford Campus. What a beautiful place to go to school.  Kids, keep your grades up! 

While I was at church, Lisa got to meet the Attending Physician, Dr. Bennitz, who gave the first set of expectations we've received since arriving. He said, "Your daughter's heart is going to require a level of creativity that will require some time and careful planning. It it likely that you won't even be on the docket for surgery for at least 3-4 days. You'll likely be in California for 3-4 weeks." Then again, this is the neonatalogist speaking, and we haven't really spoken much with cardiology or surgical staff. So, I wouldn't start penciling in any dates.

We were already mentally prepared for a month stay at Stanford, but the words did seem a little overwhleming nonetheless. And then the ultimate question is, once we are "on the docket" how long will it be thereafter that the surgery is scheduled? I must say that I chuckled a bit with the doctor's choice of words--"your daughter's heart is going to require a level of creativity." Primary Children's had prepared us for the perspective, and that is why they have sent us here.

I am curious, though, as to how our surgeon is going to look at this. Will he be excited by the challenge, by the "creativity required" to fix our daughter's heart? Or will her heart scare him deep down inside--whether he admits it or not. Is he the competitor that wants to take the figurative last shot with his team's season on the line, or is he a superstar that wants nothing to do with the ball, down by one with ten seconds to go? I'll assume the former, primarily because I trust the physicians at Primary Children's who sent us here--and because it makes me feel better to think that he's the kind that wants to take that last shot, the who enjoys the pressure of saving the day. Because the pressure will be on him during what I hear should be a 12 hour surgery.

I'll close with a few images from the day:



Mama, elegant as ever


Daddy loves his girl


Abby is taking a pacifier nicely


Stanford Campus

Saturday, October 24, 2009

Third Update from Jeff

We're at Lucile Packard Children's Hospital at Stanford.  Baby looks great and is stable.  They've removed the ventilator tube from her throat.  Oh, that has got to feel good.  She is also no longer on any medications either.



Our accommodations are yet another blessing.  We are staying 10 minutes from the hospital in Menlo Park at the lovely home of Leslie Neumarker--the mother of a friend at work.  The home is a beautiful English Tudor complete with an authentic English garden with an attention to detail that one rarely sees these days.



Lisa is doing great.  My heart aches for her in having to recover from her pregnancy and delivery under such circumstances.  I love her more now than I ever thought possible.  And after five kids and 40 years, she is still one hot mama.




That's it for now.  No new news.  All is well, and we're enjoying our baby.  We have no idea if we're a day, a week, or heaven forbid, a month away from surgery.  We're just happy she's stable.  If you see our kids, give them a hug and a kiss from their mom and dad.

Friday, October 23, 2009

Second Update from Jeff

I guess you could say that we now have a taste of what it’s like to live the life of the rich and famous: at the moment we’re many thousand feet in the air in Abigail’s private jet. This is the second flight for this little jetsetter this week. One of my passions in life is travel, and I’m happy that Abby shares that passion.


Yesterday we got a hint that we might be flying out today, but no one could confirm that. In fact, until 11:00 a.m. today no one could confirm it. But by just after 1:00 we were leaving the hospital with Life-Flight on our way to the airport--the whirlwind continues. Here are a few of the details that led to today’s transport.

First Procedure a Success

Abigail had her first procedure yesterday--the catheterization whose purpose was twofold: (1) to widen the hole in the upper chambers (right atrium and left atrium) of her heart to allow for the mixing of the oxygenated blood and the oxygen-depleted blood; (2) to emit die in various places in the heart, particularly around the coronary arteries, so that the x-ray machine could show the surgeons and cardiologists exactly what was happening in the heart. The x-ray’s confirmed the placement of the coronaries in relation to the aorta, which not surprisingly in Abigail‘s case, will make the surgery that much more complex.

According to everyone involved, the procedure went perfectly. The doctor who was in charge of pulling that inflated balloon back through the hole in the wall between the left and right atrium did so with perfection--so much so that he received a standing ovation from those in the room. As predicted, that procedure has increased the oxygenation in her blood and her oxygenation saturation levels are excellent, and she does not require any oxygen right now; however, they still have the ventilator tub in her throat for transport, and I assume that they might just leave it in because they use it during surgery as well.

After the procedure they began talking about transporting her to Stanford, and suggested that we might possibly be going tomorrow, but that they could not guarantee anything, especially the time. It is odd how that kind of ambiguity hasn’t bothered Lisa or me. It just is what it is. They couldn’t tell us whether we would be flying with her. We didn’t know how and when we would get there, and we couldn’t book any flights ourselves until we knew. And even if Life-Flight were to give us a time in advance, we were advised not to book any flights because the odds of getting bumped for a greater emergency were decent. Beyond that we had no idea where we would stay in Palo Alto. But none of that really mattered; we knew it would just work out, like everything has. In a situation like this, you learn really quickly to accept your situation, and not to get too uptight about anything.

The possibility of getting Abigail to Stanford quickly was exciting (even though the prospect of the surgery is still quite frightening on one level). However, we then stated to feel to anxiety of leaving our four children for who knows how long. And even though we have hoards of people who are willing to not only take care but to love our kids right now, they still need their Mom and Dad.

The Kids Come to Visit Mom and Dad

Last night Lisa’s father ran Jeffrey, Daphne, and Emma up to see us. We got to eat in the cafeteria, show them pictures of Abigail’s heart, and hug them. I don’t think that the hospital wanted anyone in the hospital under the age of 14, but we didn’t ask--on purpose. We knew they had the swine flu long ago and weren’t at risk of infecting anyone. I, of course, was afraid that security might see the kids and require us to leave, so I walked briskly with Emma in my arms through giant circular revolving door at the north entrance of Primary Children’s. I was so anxious to get through the door and into the cafeteria immediately to the left that I moved too fast through the door, smashing Emma and I into the clear glass door, which ironically showered a lot more attention upon us than would have otherwise existed. Thankfully, security just smiled and didn’t bat an eye. Once in the cafeteria I was able to share some exciting news with the kids.

An hour earlier we had obtained permission from the hospital to allow for Abigail’s siblings to spend time with her just before transport. A kind social worker, Shelly (none of the name badges of the hospital employees have last names except for the physicians) spearheaded the effort for me, and obtained permission for our kids to come and see their sister. I am grateful that the powers-that-be at Primary Children’s were sensitive enough to put family over policy. I have nothing but tender affections for the entire staff at Primary Children’s. Every single nurse and doctor that took care of Abigail was kind, sensitive, and genuinely interested in her well being. Their bedside manners were off-the-charts. We hope that we get to spend many more hours there over the years, as Abigail will return for check-ups. They say that they have many adult former patients who still go to Primary Children’s for follow-up care because the doctor’s and nurses there are so adept at handling their complex cases.

Anyway, we had a sweet visit with the kids. After about two hours, it was time to send them home to get ready for bed. We could sense that Daphne and Emma were especially needy and clingy, and we thought momentarily about having them stay the night, but the logistics seemed too difficult, so we sent them home with grandpa. About 15 minutes after they had left, Lisa said, “We made the wrong decision; Daphne and Emma need to be with us; I don’t know how we’ll pull tomorrow off, but we just need to do this.” Lisa then called grandpa, and he very patiently got off the freeway, turned around, and brought them back. I will explain momentarily why I am so grateful for that decision. Too often we ignore those little promptings to put feelings over logistics. And before we know it, their little lives pass by, they grow up, and we look back and have no memories of logistics.

Swimsuits? Who Needs Them?



I took the girls back to the hotel while Lisa stayed with the baby. As soon as we got settled into our room, the girls asked me if they could go “see” the pool. They didn’t have a change of clothes, and they certainly didn’t have swimsuits, but because the pool is perhaps the best thing about any child’s vacation, I thought it was worth the visit. Once at the pool, they asked, “Can we dip our toes into the water?

“Sure.”

Once their toes were successfully dipped, they asked, “Can we just roll up our pants and get our legs wet.”

“Sure.” I could see where this was heading, but my defenses were down.

Then, the climax, “Can we just swim with our clothes on?”

Logistics were flashing through my mind: is the hotel staff and other bathers going to be bothered by people swimming in street clothes; is the hotel staff going to be mad when we come dripping through the lobby in a few minutes; what are they going to wear to bed; will their clothes be dry by tomorrow, and so on. Logistics, schmolistics. Let ‘em swim.

“Sure,” I said, shrugging my shoulders and smiling. Daphne did a double take: Did my Dad just tell me that I could swim with my clothes on? So, she asked again, just to make sure:

“Dad, can we swim with our clothes on?”

“Yes, Daphne, you can.”

“Really?” she asked a third time.

“Yes, really.” Before I had a chance to change my mind, she and Emma quickly submersed themselves into the water.

As they swam and showed me special tricks (“look, Dad, no hands . . .”), they would come up for air, ask a question or two about Abigail, and then go back to bouncing between the hot tub and the pool, clothed in full glory, as two sweaty, old fat guys in the hot tub observed, surely wondering if these girls’ father had lost his mind.






Are We Going to Stanford Today?

This morning Lisa agreed to rest at the hotel with the girls, who got to snuggle and be with their mom while I went and check on Abigail and tried to learn of the flight plans. I called her nurse on my way over to the hospital to find out if he had heard anything regarding transport. He hadn’t. I was concerned that we might receive 15 minutes notice prior to transport, and that we wouldn’t be able to arrange a visit with the kids, the two oldest of which were in school in Orem. I then called a friend in our ward, Sharon Peterson, whose husband, Reggie, is the director of Life Flight in Utah County.

“Sharon, does Reggie by chance have any insider access into the schedule of Life Flight to where he might be able to know if they at least have Abigail penciled in today? I just want to be prepared to get the kids up here in time to see her.”

Sharon made the phone call to Reggie, who placed multiple phone calls within his network. The first report back from Sharon was that the director of Life Flight at Primary Children’s wasn’t familiar with the name, and neither was the dispatcher, and nothing was on the schedule, but he was going to continue to make a few phone calls.

A few minutes later, Dr. Gray, one of Abby’s cardiologists, came in to check on her, and give me a report on things. After we spoke, he said that he was going to communicate with Stanford about her, which lead me to believe that we weren’t too deep into conversations with Stanford, and that perhaps that they weren’t ready for us to leave. I was about to text Lisa to tell her that we weren’t leaving today, when I decided to put it off for a few minutes, while I went to eat brunch (11:00). Before I left to the cafeteria, I spoke briefly to the nurse practitioner about my desire to have the kids come see their sister, and that if there was anyway to give us some notice about the flight, I would greatly appreciate it. She winked at me and said, “I’ve got a few connections.”

The Siblings Meet Their Sister



Within 5 minutes, I received a phone call: “Get your kids up here as soon as possible. Life Flight wants to take off at 2:00, which means they’ll be coming before 1:00 to get her ready. In the meantime, we’ll move Abigail in to the Family Visiting Room.”

I called grandma Stoddard and asked her to pick up Sami and Jeffrey as soon as humanly possibly at school. I then alerted Lisa that I was coming to pick up her and the girls.

By the time we got the little girls to the hospital, got their hands washed, and their gowns and masks on (a condition of the visit), Life Flight was in the hallway heading toward the Family Visiting Room. My heart sank.  The big kids were still en route. They’re going to miss this.

The social worker who had helped to arrange the visit quickly went on the offensive with Life Flight, “This girl’s siblings are going to visit, and I need you to give them 15 minutes.” The Life Flight runs, I just learned, 1000 neonatal missions a year, and 800 other (older people) missions per year. That’s 4 point something missions per day. These people are on a tight schedule, and their sense of urgency is usually motivated by life and death. So you can imagine why they were a bit hesitant to allow to much grass to grow under their feet by waiting for a few teenagers to arrive from school.

Emma and Daphne were able to go in first, while we anxiously awaited the arrival of Sami and Jeffrey. Emma and Daphne sang primary songs to Abigail, as the Life Flight personnel prepared her transport carriage. The primary songs were too much for my weak heart, and the tears flowed freely as I filmed the girls singing to their sister. With hands in latex gloves, they touch her head, hands, and body. Emma also told her the story of the Three Little Pigs.

Meanwhile, the Life Flight carriage looked near ready, and I began to wonder if the big kids were going to miss Abby. To my relief, Life Flight was still fast at work with preparations when Sami and Jeffrey arrived. They too dawned the masks, gowns, and gloves before they were able to come in and meet their sister. Gratefully they had a good 15 minutes with her as Life Flight continue to do their thing to get her ready, including moving her from her bed into her carriage, which required the connecting and disconnecting of who knows how many cords and tubes.




Just before they closed the carriage, they told each of the kids to kiss their baby sister’s hand, which each of them did, from oldest to youngest. We then somewhat hurriedly, hugged our kids, tears flowing all around, as we followed the Life Flight Team down through a few back-door corridors and elevator, out to the ambulance which transported us to the Salt Lake City Airport.

I am so grateful that we were able to fly with her. It made everything so much easier than if we would have had to navigate a commercial flight, stood in security, and dealt with the customer no-service that defines the airline industry. Our flight to San Jose was a quick 2 hours and 20 minutes, and we took off, flew, and landed without incident. We then boarded another ambulance (our insurance company is considering chapter 11 bankruptcy at this point) and within 30 minutes we were at Lucile Packard Children’s Hospital at Stanford University--our new home for who knows how long.

Final Lessons from Primary Children’s

It is with some regret that we leave Primary Children’s. One of the blessings of being at Primary Children’s--as I’m sure it is here--is that the longer you stay there the more you realize that your problems and trials are not as tragic or large as you think they are. Whether it is passing an eight-year old girl in the hallway, who is sauntering slowly past you with a head depleted of its hair from her cancer treatments; whether it is a 13-year old boy whose head is contained in some plastic contraption and whose underdeveloped and malformed body sits limply in his wheelchair; or whether it’s a grieving mother who doesn’t have the knowledge of the plan of salvation to carry her through this trial; whether it is a myriad of trials that we don’t have, we quickly learned at Primary Children’s that we don’t have it so bad. Abigail doesn’t know she’s sick; Abigail doesn’t have to worry what others will think about her bald head; Abigail hasn’t had enough time to wonder if she’ll ever walk or run.

Yes, we could feel bad for ourselves and for our little girl, but oddly, that isn’t an emotion we have felt. We are fully cognizant of the possibility that Abigail may not make it. She is facing a major surgery--one that requires a level of expertise that very few surgeons in the world have. We are not yet sure what God’s plan is for her or for us. We know what we are praying for, and we know what you are all praying for, and we hope like we’ve never hoped for anything before that Abigail will be granted a bill of health. Yet, despite all of that uncertainty, we again feel a tremendous measure of peace and gratitude for this tremendous blessing. Good night and hug your kids tight.

Heading for Stanford!

Last night's procedure went so well the surgical staff gave the physician a standing ovation as he finished. 

Jeff and Lisa both were able to travel WITH Abigail on the life-flight jet to Stanford this afternoon.  Emma, Daphne, and Jeffrey were hopefully able to see her for the first time just before they left for California.  More updates coming soon!

It's a Girl!


The last few days of uncertainty and fear have been very tender, beautiful, and filled with a peace that is hard to describe. We have been overwhelmed with an outpouring of emails, texts, and voicemails wishing us and our beautiful baby well. Those prayers have an impact so please keep them from coming.


As I am not able to call everyone back, I thought that many of you would like me to fill in the gaps regarding the last few days, and would like an update on Abigail’s condition. Some of the information and detail below may not be of interest to some of you, so I have labeled the text below with headings. I apologize for its length, as this sort of morphed into a journal entry of the first few days of Abigail’s life. Feel free to “cherry-pick” the information that you want to digest by skimming the headings first, and skipping to a section that interests you.

The Birth

Abigail Rose (there’s a story behind the name which will come later) was born at 2:08 p.m. on Monday, October 19, 2009 at Timpanogos Regional Medical Center in Orem. Somewhat ironically, this was without questions Lisa’s most pleasant and smooth delivery, thanks in large part to the surprise assistance of Kathryn (Hardy) Seamons, a close family friend who also happens to be a member of the practice of Nurse Midwives that worked with Lisa throughout her pregnancy. Kathryn just happened to be on call the day that we decided to induce Lisa (Lisa has only gone in to labor once in five tries without the aid of Pitocin, the drug that causes the Uterus to contract) and her cheery disposition was the perfect remedy to what is always an earnest affair. We arrived at the hospital at about 6:30, but we didn’t start the inducement till about 9:00. Fortunately, Lisa began contracting naturally an hour before she was given Pitocin, and she required relatively little Pitocin to set and carry the labor in motion.

By 2:30, I was texting friends various shouts of joy and exclamations of how great this experience was. As I have felt with the birth of each of my children, I was overcome Monday afternoon with a sense of wonder and awe, and a deep appreciation for the workings of God, who at times like this I think of as the greatest scientist in the universe. Abigail was seemingly physically perfect. During the pregnancy, I wondered in passing if it were possible to have yet another startlingly attractive girl—frankly, I could care less how she looks, but I didn’t want her to grow up with the pressure of having three very physically beautiful sisters and not be equally as attractive herself. Well, that concern was quickly erased, as we could immediately see that nature had been kind to this one, and that Abigail was another fine example of how well the Stoddard and Reeves genes mix.

Tuesday, October 20, 2009

Some Concern Following the Birth




The only time Lisa was able to hold Abigail, 10 minutes after birth.
The nurse held her close to Lisa, but never let go of the baby.


 
The respiratory nurse and midwife were concerned that Abigail had swallowed some meconium, and after doing their initial check-up and suctioning fluids from her mouth, they whisked her off to the nursery for a little more attention—all of which seemed like a precaution to everyone involved; not necessarily an alarm that there were major health concerns. While in the nursery, Abigail’s “sats” were taken, and they measured, among other things, the oxygen saturation in her blood, which seemed lower than they would want. She was also breathing a little faster than they would like. They didn’t seem overly concerned, so I continued to videotape and snap photos of her, all the while thinking how lucky we were to have a healthy baby with no known deformities, and with five fingers and toes.

The oxygen saturation in her blood continued to be a concern, as they began to pump oxygen into her in increasing quantities. They initially hypothesized that this meant that the meconium had gotten into her lungs and was causing the air sacks in her lungs to “stick together,” not allowing her to really take deep breaths. The pediatrician on call asked for her to be put on a C-Pap machine that would blow air into her lungs and force them to expand and the “sticky” sacks to open. At that point, our level of concern climbed a little, but we were confident that she was in good hands, and the situation would be rectified soon. At Lisa’s urging, I gave Abigail her first priesthood blessing, a tender moment characterized by the profound feeling of peace that has persisted since that moment. After the blessing, they moved Abigail into a more secluded section of the nursery where they could put her on the c-pap machine.


The Diagnosis Becomes a Little More Grave

It wasn’t until 6:30 that Lisa and I were able to return to the nursery and see Abigail. Lisa had to regain sufficient strength to get into a wheelchair before I could take her to see her daughter, whom she had only held for about 30 seconds before the respiratory nurse whisked her off to the nursery. As we entered the nursery, I pointed to another infant that was housed in a plastic box-type contraption, and whispered to Lisa, “Well, at least we can be thankful that our baby doesn’t require that!”

I wheeled Lisa over to Abigail, who was enmeshed in tubes. We hadn’t been with her 30 seconds when we were introduced to the Neonatologist, a grave, serious, and very direct (but thankfully very competent) man, who minced no words in telling us immediately, “Your daughter is a very sick little girl, and things don’t look good.” Prior to that moment, we hadn’t even conceived of the possibility of Abigail being really sick. But within one minute we understood that she was being placed in Newborn ICU (NICU), and that things “didn’t look good.” The neonatologist then asked us if anyone in the family had been sick recently. I responded sort of awkwardly, and said, “Yes.”

He then said, “Who?” I sheepishly raised my hand. Yes, I actually raised my hand, as if I were a school kid, caught in the act of breaking the rules, volunteering that I was the guilty party. I had been diagnosed with influenza (swine flu) six days prior to the birth—which was 4 days after I felt my first symptoms. I had justified being part of the labor and delivery because I had been symptom free for five days with the exception that my voice was still horse, and I had irritating occasional cough, which generally manifested itself only after I would eat something. I hadn’t ever had a sore throat; I had a fever for three hours, chilled for about 45 minutes, was tired for two days, and that was the extent of my swine flu—a flu that I sort of scoffed at and renamed the “Media Flu” (i.e. the ratings booster for CNN). I’ve been a little less arrogant about my perception of the flu as many of my friends have since suffered from its affects, which for them was for some reason much greater than what I experienced.

Time-out for a commercial: I am really not digressing here, as the swine flu fits into the narrative later, so be patient.

We had postponed Lisa’s induction five days because of the flu. And even though I had felt justified with being in the hospital for the birth of my child, I suddenly felt guilty and very small when the stern neonatologist inquired as to who might have had given the baby the swine flu. His initial hypothesis speculated that her respiratory issues may have to do with the flu, although he had admitted that he was only speculating. Even though we had taken great care to separate me from Lisa during the previous six days, suddenly I began to think that I had been too casual and not careful enough in quarantining myself from her. As it turned out, the swine flu hypothesis soon died in favor of something far more serious.

From Bad to Worse: The Life-Flight to Primary Children’s Hospital


About an hour after we learned that Abigail was on her way to intensive-care, Lisa and I decided that I needed to go home and be with our other four children to hug them, show them pictures and videos of the baby, and brief them on the situation. I left the hospital with a wrench in my gut, thinking that I might possibly not see Abigail alive again, that I would get a call from Lisa, saying that she had just learned that she had died. What made the feeling more profound was the now seemingly prophetic question that Samantha had posed to me just the night before.  I was up in her room just before bedtime, going through our routine of visiting with each of the kids, when Samantha asked, "Dad, are you prepared to deal with the baby dying?"  It was such an odd question, and apparently so out of context, that I was startled--so startled that I could only give an honest answer.

"No, Sam, I am not prepared for that.  And I don't know how well I would do deal with that.  But I know if that's what happened that Heavenly Father would help us."

With Sam's "prophesy" ringing in my ears, it is understated to say that it was difficult to leave the hospital, but I felt an equal pull, tugging at me to go home and be with our other four children.

Minutes after I arrived home, "the call" from Lisa came. I had been in the house for just a few moments, when one of the children told me that Mom was on the phone.  I panicked for a moment.  Abigail’s condition had escalated to the negative so quickly that evening that I expected that phone call to be the communication that Abigail had died. Instead, the news wasn’t so final, but was almost equally grim: “The neonatologist just announced again that ‘things don’t look good,’ that the baby likely has congenital heart disease, and that she is being transported immediately via Life-Flight to Primary Children’s Medical Center.” She asked me to drive to Primary Children’s to be with the baby.

Before I left the house I sat down with our four children at home, showed them highlights from the day of video and snapshots, and then shared with them the gravity of the situation. My parents had fortunately just showed up at the house, and were there to share in our tears as we watched the video of Abigail, and as I explained to my children that Abigail is very sick, and that she may not live very long. I then reassured my kids of the peace that I had felt since I gave Abigail her first blessing. I told them that I didn’t quite know what that peace meant—that it did not guarantee that Abigail would live or that she would ever be healthy—but that I did know that that peace signified that Heavenly Father was with us, that he’s in charge, and that no matter what happens, that Abigail’s life—be it long or short—will serve to help bring our family come closer to our ultimate goal: eternal life as a family unit.

Before I left my children for the trip to Primary Children’s, we knelt in prayer as a family, and my father served as the voice in our petition to God. After the prayer, I hugged each of my kids with a sensitivity and a love for them that I don’t think I’ve felt so strongly before.

Hours of Uncertainty: Swine Flu Quarantine at Primary Children’s

I was accompanied to Primary Children’s by my good friend, Quinn Kofford. I can think of no other person with whom I would rather spend these hours of uncertainty. As many of you know, Quinn just lost his sweet 5-year old son, Cooper, in July to an automobile accident in his driveway. Quinn and his wife Jana Lynn’s response to the tragic death of their son has been other-worldly. While their open wounds are excruciatingly painful, they have leveraged their experience to change lives and to grow their family closer to God. I know of no other better way to describe their response to Cooper’s death than to call it transformative and life-changing for everyone who has even the remotest relationship with them.

As Quinn drove, I apologized for consuming what was likely to be his entire night and early morning, to which Quinn aptly replied, “Look, Heaven is real close right now. This is a pleasure.” He shared some tender feelings about Cooper, and I about Abigail. We talked about peace, death, life, trial, love, mourning, family, and even sprinkled in a little small talk. We laughed. We cried. We prayed.

Primary Children’s had been alerted that the father of their newest addition was recovering from the swine flu, and security was given strict instructions not to let me near her. Thus, Quinn and I had to stay in the lobby of the hospital the entire evening, and we were told to dawn masks.

Quinn was a lifesaver in so many ways that evening. While security tried to get my cell phone number so that the doctors could “call me” with updates, he made them bring the life-flight team downstairs to discuss Abigail in person. When we hadn’t heard from anyone for over three hours, Quinn made security fetch our team of doctors. When I sat in the lobby, a bit overwhelmed at what I was being told, Quinn asked clarifying questions so that I could properly inform my wife of what we had learned. When I wasn’t allowed to go upstairs, Quinn went in my place and gave a second priesthood blessing to Abigail.

That ability for Quinn to even give that blessing was a bit of a tender mercy. It was 3:30 a.m., and we had just met with three doctors—two cardiologists and a pediatrician—who had explained Abigail’s various heart defects. After Quinn asked a few clarifying questions, I asked the doctors, “I realize that in my state, you are not going to allow me to go upstairs, but I want nothing more than to give my baby a blessing. Because I can’t do that, I would greatly appreciate it if you would allow my close friend here to give my baby a blessing.”

The pediatrician replied with the company line that Quinn probably wouldn’t be allowed into the NICU because hospital policy states that all visitors must be accompanied by a parent. She suggested that perhaps tomorrow they might be able to get an exception, or that perhaps that roaming Elders might be able to give her a blessing tomorrow. At that point, one of the other doctors stood up and said, “Look, it’s 3:30 in the morning, and this friend is here right now. Let’s make that exception right now.” The pediatrician, somewhat uncomfortably radioed the head nurse in the NICU, asking for the exception, which was granted to my great relief. That same doctor who stood up for us then offered to assist Quinn in giving that blessing.

While Quinn went upstairs to give the blessing, I stayed in the lobby and prayed. When Quinn returned to the lobby, we both felt completely energized and we regained an energy that we had lost several hours before. The drive back to Orem at 4:30 a.m. was pleasant, peaceful, and without tired eyelids.