Aaron's Story

Today I went to church.  That shouldn't be a big deal really but it was because it was hard.  I clearly have the advantage over Chopper in dealing with grief.  As a stay-at-home-mom I'm able to hide at home and not talk to people if I don't want to.  And I did kind've avoid people at church today but most of the sisters just said hi or gave me a hug.  Or smiled and moved on.  And it's what I needed.  I feel good today so I'm going to read through this post that I've written about Aaron and see if I feel ok with posting it finally.

Of course we've known about Aaron's heart defect since I was about 16 weeks pregnant and I've posted many times about our doctor visits, feelings, and fears.  Going into this there was a lot that was expected but also a lot that was unexpected in many ways.  Chopper and I considered at times that we would lose him, but in all honesty we tried not to think about it -- that was harder than thinking about hospitalizations, surgeries, even transplant.  There is a lot of grief and heartache but there is also peace about everything that has occurred.  That doesn't keep me from crying but it does help.

The week before Aaron's birth I had had an ultrasound that had left me a little unsettled.  The technician kept asking me questions about slow heartbeat and regular movements that made it sound as if there was a problem.  She said there wasn’t, but I was feeling a little paranoid.  Sunday afternoon there had been less movement in the womb and I was eating sugar, drinking soda, doing things to try to get him to move.  When I went to bed, there was a body part (I didn’t know what) firmly pressed against my belly button that wasn’t moving when I tried to massage and push it.  About 1:30 a.m. Abby woke me up with her usual getting out of bed in the middle of the night routine and I realized that that body part still had not moved in the past hours of being asleep.  I completely panicked.  I woke Chopper up crying because you hear stories about women carrying to term and then delivering stillborn because of a wrapped cord or whatever but I also worried that it was nothing and I was overreacting.  Chopper tried to give me a blessing and couldn’t and that made me panic more.  We said a prayer instead and I got in the car and drove to an urgent care facility. 

                At urgent care they wouldn’t even look at me.  All I wanted was a Doppler to check the heartbeat and know he was ok but they told me they don’t even touch women over 20 weeks pregnant, so again, I got in the car and drove to Presbyterian hospital in Plano.  I had been told that in an emergency, their NICU could handle Aaron until they could transfer him to Children's Hospital and it was closer to home.  I didn’t know if this was an emergency or not so that’s where I went.  In labor and delivery they hooked me up to baby monitors.  The good news was that there was a heartbeat.  The bad news was that as they continuously monitored his heart in order to get a baseline reading, they worried about some dips in the heartrate.  They decided because it wasn’t critical but still worrisome to transfer me to St. Paul’s Hospital where I was scheduled to be delivered so that my doctor could make decisions about whether to discharge me or deliver me.

                I have never felt so ridiculous in my life as I did as a healthy, 38 week along pregnant woman being carried on a stretcher to an ambulance with an IV in one arm, a pulse oximeter on the other, and wearing an oxygen mask.  At one point in the process as the nurses were arranging the transfer, the nurse at the desk called in to the nurse in my room: “ambulance or air?” and I yelled back – “I don’t need to be life-flighted!!!”  I guess better safe than sorry right?  So I had my first ever ambulance ride.

                All day Monday I sat in labor and delivery at St. Paul’s Hospital UT Southwestern.  I had a baby monitor and a “me” monitor around my belly, blood pressure cuff and pulse oximeter on one arm and IV in the other.  Dr. Lo had ordered 8-10 hours of continuous monitoring and I was strapped to the bed for all of it.  The only good thing about it is that I wasn’t in labor as well!!!  Dr. Lo came in, her partner came in, her resident came in, and of course nurse visits, etc.  Everyone said that he looked good, really good, and the talk was that I was going to be discharged in the early afternoon.  The only bad thing was that they believed he had turned breach after palpating my belly and that was NOT good.  Regardless of the good news, Chopper found a friend to watch the kids so he could finish some cleaning at the house and then join me at the hospital and I called my mom who was having a sibling reunion in Utah and she found a flight to Dallas that same day – which I also thought was unnecessary – at first.

                After a day in bed waiting for discharge, Dr. Humble (the resident) came in with a sonogram machine.  He did a 30-second check on the baby and confirmed that Aaron was full breach with feet straight down and announced that we were delivering by c-section the next day at noon.  After 3 pregnancies where I hadn’t even had an epidural for labor, this pretty much did me in and I started to cry and panic about epidural, surgery, and everything else involved in having a c-section.  They didn’t explain very well the reason for their decision and so Dr. Humble earned the name of the evil resident – not because he was evil but because he always got to deliver the bad news.  They also decided to keep me at the hospital overnight and I complied simply because I thought that if they felt it best for the baby, then I would do it.  Chopper gave me a blessing and my mom arrived and things started to look better although I remained incredibly scared.

                The next morning, Tuesday, February 18 – birth day – went by pretty fast.  My day nurse in Labor and Delivery was absolutely fantastic.  I was finally able to take a shower and then we prepped for surgery.  We walked to the operating room and he waited outside while they sat me on the table to do the epidural.  I just tried to breathe and not shake too much because what kept running through my head were the stories of moving during an epidural and ending up with punctured spinal sacks, spinal headaches, etc.  They told me my legs would get warm and tingly quickly, and they did, but I didn’t feel like it had worked well enough.  Then they lifted my legs and swung me around to lie down on the table.  In that one motion my whole body practically went numb!  They started prepping for the surgery, pinching my legs and abdomen to make sure I had no feeling, raised the curtain for surgery, and then allowed Chopper to come in and sit at my head and hold my hand.

                Having a c-section was the weirdest thing of my life I think.  Once they made the incision and verified that Aaron was low enough and feet first not to cut any further, they started tugging and pulling and who knows what they were doing.  You don’t feel pain but you feel pressure and movement.  There was some heavy pushing on my abdomen and lower chest in order to work the baby out and then he was out!  They hung his purple-blue and wrinkly body over the barrier for just a second so that I could see him and then passed him to the NICU team and set about putting me back together – also more tugging and pressure!  As they cleaned Aaron and checked his vitals he started screaming – an incredible sound to hear.  He was 6 pounds 4 ounces and his APGAR score was a 9!!  My other kids were 9’s.  He pinked up beautifully (we had been told to expect him to remain a little blue) and looked like a normal baby.  They gave us a few minutes in the OR to hold him and take a few pictures and then carried him off to the NICU.  My labor and delivery room was between the OR and the NICU and my mom was able to see Aaron for a moment as they carried him down.

One of the nurses took Chopper's phone from him in the operating room and took all of these pictures.  I'm so grateful she did!!  I had an iron grip on Chopper's hand and we were talking with the anesthesiologist about Downton Abbey and the Olympics -- anything to keep my mind off of what was going on.  Chopper sent me this picture later in the day and honestly, I think it's one of my favorite pictures ever.  I was so glad to see a living, "healthy" baby boy!

I didn't think that he would be swollen with a c-section but he was and had a lot of the William look to him -- minus the hair of course.  But as the swelling went down particularly in his face he got a little more Abby-ish and then became his own individual self.

Side note -- I am now a believer in the old wives' tale about hair on a baby causing heartburn.  I had horrible heartburn with William and he had a full head of blond hair.  Hardly any with Aaron and he had the hairline of an old man.

                After finishing the surgery they rolled me back down to my room where I sat numb in the bed for a while and then was able to be rolled down to the NICU in order to spend some time with Aaron.  Aaron had 2 IV lines in running prostaglandins to his heart to keep his PDA open and an arterial line through his umbilical cord for blood draws, etc.  He was stuck in bed and I was stuck in bed but I was able to touch him and talk to him and take pictures.  After wheeling me back to my room and transferring me to postpartum, they prepared Aaron for transfer to Children’s Hospital.  The transfer team has a rolling incubator that truly looked like a spaceship.  There is every contraption on it designed to keep an infant going if they’re very sick – oxygen, IV lines, etc. and a padded incubator to keep them warm.  Aaron was strapped in securely, the transport team came by to show him off briefly, and then it was off to Children’s.  Chopper followed a little later to see him settled in and I spent a pretty uncomfortable night in a hospital bed unable to move.

This is only the baby half of the transport.  The rest of it is all equipment.  It's almost like a little train.

                On Wednesday the 19^th, Chopper spent the day at Children’s and I waited patiently at St. Paul’s Hospital.  The catheter and the epidural line had to stay in for 24 hours and the IV line 48 so my movement and my "travel" was limited.  I also had quite a bit of swelling in my legs and feet and was very unsteady to walk so I lay in bed watching Olympics, reading, and eating while Aaron lay in bed apparently protesting everything the nurses did to him.  The first picture Chopper sent to me of Aaron he had several lines attached to his hands and head.  Most of them were non-invasive and simply monitored things like heartbeat, blood oxygen saturation levels, blood pressure, etc.  They were able to draw blood through his arterial line so that they didn’t need to stick him each time.  He had socks on his hands because he kept pulling at his lines and a hat on his head but otherwise was naked under a warmer because of all the wires.  The word at first was that the doctors planned to do a heart catheterization but instead started with a heart echo to try and get a better picture of what was going on.  Chopper was able to touch him and talk to him but said that every time the nurses did something, even as simple as changing a diaper, he would yell at them.  He always looked so frowny faced in those first pictures but then I would too if I were going through what he had to go through!  He spent a lot of time sleeping.  The prostaglandins were keeping his PDA open and some blood flow to his lungs for oxygenation and yet his body still needed to work hard to do what it needed to do.  That night Chopper went home and showed pictures of Aaron to the girls.  They were pretty excited to see him.  Megan wanted to see him in person.  Abby wanted to see the hospital.

That is an iPod up by his head.  They have them at Children's for the babies to listen to music.  The irony is that Aaron particularly loved the "lullabied" version of Stairway to Heaven.

                Thursday, February 19^th.  Chopper came to see me in the morning and they finally took all my lines out.  He was able to take me over to Children’s Hospital and I was able to spend some time with Aaron.  I actually got to hold him!  They were able to sit me right next to this bassinet and secure his lines and although it wasn't for a long time, it was something.  Aaron spent most of his time sleeping and listening to music on his iPod.

First time holding him!!!!  Yes, I'm crying.

 My dad flew in early as well and came straight to the hospital in the early afternoon.  Chopper had given Aaron a name and a blessing at St. Paul’s before they transferred him to Children’s but with my dad there they were able to administer to him and my dad offered the blessing. His echocardiograms had shown that everything about his heart that we had expected was there but also that there were some additional complications.  The tissue in the aorta didn’t seem to be an issue and there was talk about doing a heart catheterization finally and inserting a stent into his PDA to keep it open long term.  But the coronary arteries seemed to be a problem.  Dr. Forbess and the attending for the CVICU came by to talk to us.  They agreed that they would not be able to surgically repair his heart or even palliate it to a single ventricle.  The coronaries were too much of a problem.  Dr. Forbess particularly felt that he was a great candidate for heart transplant and that we needed to make a nearly immediate decision on whether or not to list him as he felt that infant hearts came suddenly and unexpectedly.  The attending for the CVICU was quite a bit graver and more realistic.  He agreed that Aaron needed a transplant but told us that it could be a wait of several months to receive a heart and that they didn't know if Aaron could survive that long.  Infant heart transplants are very specific.  They look for a donor match but the donor infant also has to be brain dead in the hospital so that they can take the heart and transplant it in a short amount of time.  They also have to match the size of the heart.  It’s a terrible situation to have to consider for someone else so that our child can live and I had already told Chopper that if we decided to do a heart transplant that I couldn't be able to pray for a heart.  I know that it's not cause and effect but I couldn't hope in any way, shape, or form for someone else's baby to die.  The attending also told us that Aaron was at the high end of high risk for what they see -- in other words that they don't often come with the number and severity of problems that he had.  It was so strange to hear how sick he was and that repairs were unavailable when to look at him he seemed perfectly healthy and was a beautiful boy.  They scheduled Aaron to be the second heart catheterization in the morning because they needed to get a very clear picture of the coronaries and blood flow before proceeding with the listing and I went back to the hospital for the night.

                The next morning I was getting ready when Chopper called and said he was on his way to pick me up.  Some of the doctors were on the fence about whether or not Aaron could survive the catheterization and so wanted us to talk to the transplant team before moving forward.  If we wanted to list him for a heart, he would have to have a catheterization.  If not, then it was an unnecessary procedure because there wouldn’t be anything else they could do.  They feared that doing the procedure would change pressures in his heart and cause a heart attack.  Meeting with the transplant team was horrible.  But it wasn’t them – they were very straight-forward about the wait time (6-9 months), the process, the problems that a child faces with rejection (4 different types of rejection), the medications, doctor visits, labs, catheterizations, etc. that a transplant patient faces and all so that every year of your life your survival expectancy goes down.  Eventually you have to have another.  It was really hard keeping the emotion in check as we listened to them and asked some questions – I think writing everything down helped me some and I took 5 pages of notes about what they said.  At the end of their “presentation” they gave us a binder with more details about everything and asked us what we wanted to do.  Chopper asked them to give us a minute and as soon as that door closed we both began sobbing.  We also both of us felt in that moment that we couldn’t put Aaron through that process.  Individually but simultaneously we came to that decision and we both felt it was right.  It wasn’t a decision we were happy about but it was the right decision and we both knew it.  After that it was simply a matter of when.  We informed the doctor's of our decision and sat in Aaron’s hospital room and mapped out a timeline for the rest of his life.  All they needed to do was stop the prostaglandins.  His PDA would close up and he would die.  Doctors said it could be a matter of hours or a matter of days.  We talked extensively about bringing him home to die but in the end decided against it.  We wanted to make sure he died without pain.  We wanted our home to remain a safe haven, for the girls not to fear that they would die at home too or be afraid if his death turned out to be more traumatic than we thought.  I wanted him home so I could have my baby for the end but the nurses said that we would be able to hold him and care for him in the hospital so we decided to stay.  But that night, even though he was stable, Chopper stayed with Aaron in the hospital so that he wouldn’t be alone.  I was discharged from the hospital and went home to sleep.  My body wasn’t well enough to tolerate a hospital couch for a bed I think.  We had several doctors come to us after we had made the decision and tell us how brave we were to do that and also that they felt it was the right decision.  I don't feel like they influenced us in any way -- if anything the surgeon alone pushed us toward transplant -- but in a way it was comforting to hear from so many experienced  experts that what they were seeing of Aaron's heart made this decision the right one.  But every staff member from cardiologists and attending physicians to nurses treated us with great respect and love.  They helped make everything as peaceful as it could possibly be.

                Saturday, February 22^nd was the perfect day.  In the morning, I went to the hospital with my dad and the girls.  William was sick and although they had given us permission to bring him back I hated the thought of exposing those children in the CVICU to even minor infections so we decided not to bring him.  The girls loved seeing Aaron and were ok with the wires and machinery in the room.  They had removed the sensors on his face and back that monitored his brain and kidneys and had also taken out his arterial line since they didn’t need to draw blood anymore for labs.  He still had IVs for prostaglandins and his blood oxygen saturation monitor but was in many ways cord free and seemed to be so much more peaceful.  They watched a movie in the room while a professional photographer came and took pictures of Aaron and the family.  At one point we even finally got some open eyes!  My dad took the girls home around lunch and Chopper’s mom arrived in the late afternoon.  We were all able to hold him and I wrapped him in his quilt that I had taken with me to the hospital.  It was a perfect, beautiful day.

              

  Saturday night we told Megan and Abby that Aaron would not be coming home.  Megan had asked me before if they had cut him open to fix his heart and we had talked about how sick he was before but this was the first conversation we had about Aaron dying.  Abby played and Megan cried and we sent Abby out eventually so that we could soothe Megan a little.  Sunday night as my friends were getting the girls ready for bed, Abby said a prayer for Aaron that he would be good in heaven and help Heavenly Father.  It had all my friends and Megan in tears.  One friend then was able to have a conversation with Megan about losing her dad when she was 4 and shared her testimony with her.  What a blessing to be able to rely on friends not only for physical but spiritual support!  That night Chopper and Aaron again had a father son campout in a new hospital room that would give us a little more privacy for the trying hours ahead.  I arrived with the grandparents at about 9:30 on Sunday morning and at 10:30 they stopped the prostaglandins.  They left in his IV locks so that we could administer morphine if needed and the marathon began.  For the next eighteen hours we all took turns holding him.  Chopper and I were able to give him a bath and he screamed and screamed about it -- just like all my others.

  I was so worried that my incision and the swelling would make me unable to stay for a long time.  I had packed a bag with changes of clothes and things that I would need to stay the next few days in the hospital because I determined that I would not leave him alone for a single moment whether it was a few hours or a week. We had a wonderful friend watch the kids all day Sunday and stay overnight and another lined up for Monday as we waited to see what happened.  We held Aaron and talked and cried and cuddled.  I took some time to hold his sweet naked body against my chest because he was cooling down as he suffered from lack of oxygen.  Chopper told him stories about us and we did laugh.  We changed his diaper and I fed him a few bottles of breastmilk.  We watched his nails turn dark from the lack of oxygen and periodically monitored his heart rate and his blood oxygen levels.  It fluctuated but there was a fairly steady drop over the hours that told us the PDA was closing and none of us believed that he would last through the night.  He had several very scary episodes as the night went on where his breathing would become very labored, his chest would be pushing hard and then he would start screaming.  His lips and face would be purple, his oxygen levels would rise, and we told him over and over it was ok to let go.  Chopper even gave him a blessing.  As much as I wanted him, it was so emotionally draining and we didn’t want him to suffer at all.  We started having morphine administered to him when the episodes got really bad so that he could be at peace. Around 11 p.m. I couldn’t keep my eyes open any longer.  Chopper either.  I didn’t want to sleep and miss anything but I felt that I had to so Chopper and I stretched out on a couch and napped for a short while and my parents held Aaron in turns.  I woke up at 3 a.m. to stretch and Chopper got up as well.  We took Aaron from my parents so that they could get some rest.  We changed his diaper and had the nurse give him another dose of morphine and Chopper and I settled in.

About 4 a.m. Monday morning, Chopper was holding him.  He had been sleeping so much but periodically would open his eyes and look around.  I don’t think he was looking at us, I think he was looking at spirits around the room that had come to get him.  At least, that’s what I like to think and I do believe that our loved ones who have passed on come to get us.  He opened his eyes again and looked around then closed them and Chopper watched him for a moment and said, “I think he’s stopped breathing.”  I went to get the nurse and then took him from Chopper.  The nurse felt his chest, agreed that he had stopped breathing, and called the head nurse to have them check his heart.  It had stopped beating.  They turned off the monitors and left us for a while as we said goodbye again and I held that sweet baby for an hour until the room was cleaned up and it was time to leave.  He was so peaceful in my arms and in the end there was no struggle, no pain.  It was the perfect way to go I think.  Then I left him in his hospital bassinet and we walked out the door without our son.

It's a funny feeling to be so immersed in grief and yet need to organize everything that goes with a death: memorial service, burial, etc.  I still can't decide if it's good to have to think and move forward or just digging in the wound.  Thursday morning Chopper and I went to the funeral home to dress him.  He looked the same – beautiful and at peace.  It was so hard but so worth it to put on little socks and pants, a shirt and a sweater vest.  We cut his hair to keep some small pieces (there wasn’t much there!) and handled his cold little body.  We placed him in the casket with a beautiful white, lace-trimmed quilt that a dear friend made for him at the last minute.  I couldn’t bear to bury him with the quilt I made him.  It was a heart-wrenching but beautiful experience.

Initially we didn’t want to have a memorial service.  We wanted to keep things to ourselves, quiet and private.  But the Bishop talked us into it as a way for people to express their love and support to us and now I’m so grateful that we did.  It was wonderful to see the support of so many and hear their words of encouragement and love.  In addition to a large body of ward members, the stake president and one of his counselors came, my OB/GYN (not Dr. Lo who delivered me but the doctor whom I had transferred from when things looked bad), my pediatrician, Megan’s preschool teacher, several of Chopper’s coworkers, and our neighbors.  It was a beautiful service.  Chopper and I both spoke to tell Aaron’s story and bear our testimonies of what we had learned.  The music was uplifting and inspiring, the Bishop spoke about the plan of salvation and it was absolutely wonderful.

                Aaron is buried at the Dallas-Fort Worth National Cemetery in a spot that overlooks a reservoir.  It is a beautiful location with trees and rolling hills.  The burial was family only and each of us who were able to spend time with Aaron spoke about him and bore our testimonies.  We watched him placed in his grave and dedicated the site.  We’ll go back in several weeks after they’ve laid sod down and put up his headstone and then we’ll take the kids and do something to celebrate Aaron’s part in our family.  We’ll have birthday parties for him every year and a photo album so that we can talk about how much he means to us.  Chopper and I still spend a lot of time crying but we plan to celebrate him often.

There is of course so much more to this that I hold dear to my heart.  It's hard because I know that I'll see him again and I know that he'll always be my son but I still miss him so so much.  I am still happy for my friends who are pregnant and glowing but I watched one mom in church today walk out with her newborn son and I wasn't sure if I could handle it.  I don't know from day to day what will set me off. Some days I'm fine and some days I lose it if you mention breastmilk.  My children keep me smiling mostly and we talk about him.  Megan knows that when I'm sad it's because I miss Aaron and that's ok.  I will always miss him until I see him again.  And then I anticipate that I will be a crying mess again -- but that time will be for joy.