Day 24: Meet Aurelia and Jackson!!!

Day 24, brings us two amazing stories ..Aurelia, who's mom just found out that her left ventricle has grown to match her right side....A COMPLETE MIRACLE !!  And Jackson, who has overcome so much in his short little life...and looks adorable doing it!!!!!

MEET AURELIA!!!

This is Aurelia’s story, but it is also the story of our family.

After more than 8 years of marriage, Charley and I were finally ready to start a family. We got pregnant relatively quickly and quietly enjoyed the first few weeks of knowing a “secret” that no one else knew. I began spotting and went to my OB, terrified. I was 8-weeks pregnant, and I lost the baby. I was devastated, but we started trying again soon after my miscarriage and four months later, I found myself pregnant again. One year to the day after I had a miscarriage, we brought home our healthy baby girl, Madison Genevieve. Born on St. Patrick’s Day, she was our lucky charm. Aside from some jaundice and difficulties with latching on, she was perfect. Madison was a really good baby and Charley and I were perfectly happy with our little family. 

A few weeks before Madison’s first birthday, I discovered that I was pregnant again. We were shocked to say the least. It didn’t take long for us to be thrilled with the idea of expanding our family. I had always wanted several children, but Charley and I had agreed that Madison alone was more than enough to make our family whole. Apparently, God had other plans! We surprised our family member’s with this unexpected information by Madison’s birthday ensemble that included a “Big Sister” shirt. Everyone was thrilled. Three days later, I hemorrhaged so badly that I thought for certain that I had lost the baby. I called a friend to watch Madison and drove myself to the ER. Charley met me at the hospital, and we prayed and talked, saying that if God decided he needed this child more, we’d accept that. When they finally performed the ultrasound, I was certain that I wouldn’t see anything but an empty uterus. I was shocked to learn that I had not lost the baby AND I was actually much further along than I thought – nearly 11 weeks! The baby was moving and appeared to be okay. I was put on bedrest and told to follow-up with my OB in 2 weeks.

Two weeks later, I was cleared to go back to work the next week, and was told that the hemorrhaging was a freak incident. There wasn’t an explanation, but everything appeared to be fine now. Three days later, I was getting dressed for my first day back at work and I began bleeding heavily again. Again, we went to the ER and it was finally determined that I had placenta previa. I was put on bedrest for the next 10 weeks and an appointment with Maternal Fetal Medicine was arranged for me around week 18 of my pregnancy.

I hated having to give up work for the next 10 weeks, depleting my already low amount of sick leave. But, I did enjoy the time that I got to spend with Madison. It was special and I treasured it. I went to my appointment with MFM, Charley by my side. At that appointment, we were told that my placenta previa appeared to be resolved and that I could return to week. And we received the wonderful news that we would be having another little girl. Two girls! 18-months apart! How wonderful! And then the technician told us that one of her kidneys looked a little “bright” and that she wanted us to come back in two days so that the doctor could take a better look. We asked why that could be and she didn’t really give us a great answer, but somehow I felt that everything was going to be okay. I actually attributed the “brightness” on the ultrasound to the lemon-lime Gatorade that I had drank before the appointment.

We went home that day, celebrating our baby girl, and being excited about the possibilities ahead of our family. Two days later, I went for my follow-up ultrasound. Charley is a school teacher and couldn’t afford to take much more time off of work, so we agreed that I would call him as soon as the ultrasound was done. My appointment was at 9 am. Dr. Hole was the MFM specialist and he and the technician spent 45-minutes doing the ultrasound. He didn’t talk to me much during the ultrasound, but reassured me that after it was all done and he had collected his information, we would go into a conference room and talk about everything that he was seeing. Reassuring, right? Not so much. Especially not when I was hearing words like “heart function” and “small side.” Why the heck were they talking about the heart? We were here to talk about the bright kidney. Over the course of the next 45 minutes, I became more and more worried. By the time the ultrasound was done and I was led to the conference room, I was terrified.

Dr. Hole and a woman he introduced as a genetics counselor came into the conference room and began to give me the information about our baby’s kidneys and heart. He told me that one of her kidneys appeared to be full of cysts. He told me that the baby’s heart appeared to have a smaller left side. He told me that he was recommending that I visit the Children’s Hospital of Philadelphia, where I would likely deliver the baby and she would likely have heart surgery soon after she was born. He began to tell me why he brought in a genetics counselor and then his cell phone rang. Would you believe that Dr. (ass) Hole answered it? He did. Twice this happened, and while I was a wreck from the information that was flooding my ears, I was angry as heck about his bedside manner. The genetics counselor ended up being more of a shoulder to cry on while he stepped out to take one of the phone calls. I don’t remember much about that hour that I spent in the conference room, but I do remember his behavior. I remember thinking that my mom and Madison (who were waiting for me in the waiting room) would probably be frantic with worry about why this 15-minute appointment had taken 2 hours. I remember thinking that I had to relay this information to Charley as soon as I possibly could, but that I wouldn’t be able to keep myself together long enough to get the information out. Dr. Hole didn’t even say the words “hypoplastic left heart syndrome” during that initial visit. I found that out for myself, later that day, when I went home and combed the internet searching for whatever information I could find, based on what I remembered from the appointment.

I walked out of that conference room in absolute shock. I hugged Madison tightly and my mom asked if everything was okay. I said “no” and began crying. We went out into the hallway of the office and I told her a little bit. We made our way to the car and my cell phone rang. It was Charley, frantically wondering why I hadn’t called yet. I told him what I could, through my tears, panic, and fear. I honestly don’t remember much more about the next few days. Numbness, shock, and scared out of my mind. This little girl had already been through so much, overcome some serious odds, would she still have strength and determination to fight?

A week later, I went for an amniocentesis, which came back normal, thankfully. Because the baby was showing defects with both her kidneys and heart, there was likely some type of genetic reason for this, and the hope was that the amnio would rule out anything further (such as Down Syndrome, which a fair number of heart babies have). Charley is adopted and we don’t know anything about his medical history, so an amnio seemed to be a smart move.

A few weeks later, we went to CHOP for our first consult. It was a long and draining day. We learned a lot, toured the Cardiac Intensive Care Unit, the Special Delivery Unit, had a fetal echo, ultrasound, and lots and lots of meetings with various doctors, social workers, and nurses. We were only just beginning to understand what lay ahead.

During the summer, I went back to work and spent as much time as possible trying not to worry about the future. Of course, that is much easier said than done, especially because I am a natural-born worrier. We had monthly appointments at CHOP, and with my OB and MFM specialist at home. As we got closer to the end of the summer, we began to develop a plan. The baby was due on October 13th, but since I had had a c-section with Madison (she was breech), the team decided to schedule me for a c-section on October 4th. They wanted me to relocate closer to Philadelphia a few weeks before that day, so we began to research options.

Madison and I moved, along with my mom, into the Camden, NJ Ronald McDonald House on September 16th. The RMH that was close to the hospital, did not allow you to stay there unless you had a child in the hospital (or one with you who was receiving treatments). Fortunately, the Camden House allowed expectant mom’s to stay there. Our room at the house was themed with Sponge Bob. Our sheets, the giant wall mural, the bathroom, the pillows, a Sponge Bob chair, EVERYTHING, was Sponge Bob. It was hilarious. Madison was too young to know about Sponge Bob, but we laughed telling friends about it and posting pictures on facebook. Charley came to be with us on the weekend and we spent some quiet time as a family.

A week into our stay, my mom and I had plans to visit the local aquarium, but our girl had other plans. My water broke at 7:15 am on September 23rd. I woke my mom and we quickly dressed, while I called the hospital, Charley, and tried to figure out how I was going to get to the hospital. I wasn’t due for another 3 weeks, so I think that Charley was in denial that I was actually in labor. He was at work, 3 hours away, and he tried to convince me that I wasn’t going to actually have the baby that day. He quickly realized that I wasn’t kidding and headed home to get his bags before making the trip to Philly.

Meanwhile, my mom is not a city driver and was very nervous navigating the traffic from Camden into Philadelphia (a 15-minute drive). Luckily, just as we were about to call for a taxi, one of the house volunteer’s arrived and offered to drive me to the hospital. Mom, Madison, and I hopped into the RMH van and headed off to the hospital. I remember sitting in the middle seat, next to Madison, experiencing some fairly intense contractions. I was holding her hand, reassuring her that everything would be okay. She was only 18-months old and surely didn’t know what was happening, but my biggest concern at that moment was spending those last few minutes of time with her as my only child. I didn’t experience labor pains with her. She was breech and was a planned c-section, so this was all new to me. It was frightening, but I was a calm as could be for Madison. She was my center of calm at that moment and I will forever be grateful for those moments together.

We arrived at the Emergency Entrance of the hospital, which was not the entrance that I was used to. CHOP is a big place and I wasn’t in the best frame of mind, so we went the long way to get to the Special Delivery Unit. We met an angel along the way, Kathy Gilmartin, who is an employee in the Cardiac Program. She got us to the unit and even helped my mom carry my bags. I got settled in a room and spent a few more minutes quietly cuddling Madison and fighting off the painful contractions. When it was official that I was, in fact, in labor, (there was no doubt in my mind!) the nurses told me that they had another baby to deliver, but that I would be the next one to go to the OR. I prayed that Charley would arrive in time.

It seemed like just minutes, but it was actually several hours later that I was finally wheeled down to the OR. I kissed Madison and my mom and wished that Charley would get there! They placed an epidural, during one of my most painful contractions, and I relaxed a bit. Charley walked in five minutes before our little one arrived. The moment that I saw her, I fell in absolute love again. I didn't get to hold her, but I was able to give her a quick kiss before she was taken to the Cardiac ICU. Charley went with her and I was sent to recovery.

We had agreed ahead of time that her name would be Aurelia Lee. Her middle name, like Madison’s, has a family connection. Madison's middle name, Genevieve, is the name of Charley’s grandmother. Aurelia’s middle name, Lee, is my mom’s middle name. I have my grandmother’s middle name, and so does she. As for Aurelia, which many people have a hard time pronouncing (all those vowels!), it means “golden” in Latin. We wanted our daughter to have a name that would tell her how special she is to us, no matter what. She is our Golden Girl. Aurelia has a number of pronunciations, but we say it “ah-RELL-ee-ya.”

I do not remember much about the next couple of days. We found out within the first few hours of her life that she had some issues with her intestines and that she was going to have to have surgery on her abdomen before they would be able to do her heart surgery. It was so odd that after all of our worry with her heart, the immediate issue was abdominal. Charley signed the consent and we arranged to have our little girl baptized that first night of her life. Within 24-hours of her birth, she was in the OR, having her little tummy operated on. I later learned that her intestines were malrotated and that she had a webbed duodenum. The surgery was a success and our baby girl was returned to the CICU.

 Day 1, just after her abdominal surgery

10 days old, Heart Surgery #1

We spent the next 11 weeks in the hospital, bouncing back and forth between the Cardiac ICU and the Step-Down Unit, Aurelia had her first open-heart surgery (at 10 days old). She had a PA band placed and had her very-narrow aorta augmented. She had a number of other issues along the way, including 2 NEC scares and lots of respiratory and feeding issues. I pumped consistently, every 3 hours for the entire time. Aurelia, off and on, received my milk through an NG. We worked with a wonderful speech therapist to try to get her to take a bottle, but she had too many issues with aspiration and it was finally determined that a g-tube would be the only way to get her home. She had her g-tube placed on December 2nd and we were finally discharged a week later. After 11 weeks and 7 surgeries, we were finally able to bring our girl home and have our whole family together. It was incredible.

 Deep Thinker....

 First Heart Day!

We quietly began our new life, with endless doctor’s appointments, trips back and forth to CHOP for check-ups, and eventually in-home therapies. In the spring, Aurelia developed pneumonia and spent two weeks at Hershey Medical Center. She came home on oxygen and we began moving closer and closer to her next open-heart surgery. She had a cardiac catheterization in May and it was determined that she would be ready for heart surgery in July. Shortly after we had arrived home, I expressed a concern that she might have been having some episodes of apnea when she slept. We were scheduled for a sleep study in June, 3 weeks before her heart surgery.

Charley and Madison checked into the Ronald McDonald House and Aurelia and I went to the hospital. It took a good hour to get her hooked up to all of the probes and to get her head wrapped with gauze. I hooked up her overnight feed and she went to sleep. She snored louder than a truck driver. Around 3 am, I was woken up by a nurse and told that Aurelia was going to be admitted for Severe Obstructive Sleep Apnea. This was, by far, the most shocking few days for us. It was completely unexpected and the surgery that she had, 3 days later, was the most difficult. When Aurelia slept on her back, her tongue (which is slightly larger than normal) would lay back on her throat (which is more narrow than normal), and close up her wind pipe, causing the apnea. In order to correct this, a number of options were discussed, but what we ultimately did was very painful for her (and us). Aurelia’s jaw was broken and metal distractors were placed on each side of the broken jaw. She had metal pins (a la Frankenstein) sticking out of the back of her ears. We had to turn these pins each day, moving her lower jaw a millimeter each day (and hence, widening the opening to her throat. It was so heartwrenching, but we ended up moving her lower jaw about 2 ½ centimenters. She looked a bit like Jay Leno, but she could breathe! The pins were left in for several months, so that the bone could heal. We ended up being in the hospital for 2 weeks and were discharged for a week, until we had to come back for her next open-heart surgery.

 Two days before her jaw surgery...

One week after jaw surgery....

Her second (and hopefully final) heart surgery was on July 13, 2011. It went beautifully and our miracle girl was discharged after only 1 week. It was the smoothest hospital stay ever and we were so happy with the result. Aurelia started sitting up on her own during that hospital stay. She could finally breathe and her heart wasn’t having to work so hard. We were feeling quite blessed!

The rest of the summer and fall were relatively quiet. Aurelia had two more surgeries that fall - she had her distractors removed in October and then she had her cleft palate repaired in November. Again, both surgeries were successful and smooth. At home, we continued with her therapies - she receives four therapies a week - physical, occupational, speech, and special instruction. She works hard and has come so far. With the help of Sure Steps, she finally gained the confidence to put some weight on her feet. Two months before her second birthday, she finally started walking.

Aurelia’s biggest challenge right now is speech. She has significant delays, and she tries so hard to be understood. She uses a LOT of sign language and she has excellent receptive skills. She understands everything, but making others understand her is a bit of a challenge. We are currently awaiting a hearing test, to make sure that she doesn’t have major hearing loss. She is incredibly resilient though.

On February 20, 2013 (just 3 days ago), we received the most incredible news regarding our girl.  She had a cardiologist appointment and an echo, her first since August of last year.  I was terribly apprehensive about the echo.  There hasn’t been anything wrong, but it is that constant feeling of waiting for the other shoe to drop.  I’m sure that many of you will know just what I mean.  Well, she had her echo and her cardiologist reported that the left side of her heart is now the SAME size as the right.  I was completely shocked.  The left side has always been smaller, at about 70%.  I asked what happened, and it seems that when she had her VSD’s repaired during her second heart surgery, her left side was now forced to work harder (which is what the PA band repair was supposed to do, but those open VSD’s allowed the blood to shunt from side to side, circumventing the “correct” flow), and as a result, it has grown.  My girl is no longer HLHS.  Can that really happen?  I guess so.  I think that it is pretty rare, but we actually overcame HLHS.  I won’t say cured it, because she still has some complex heart issues, but it isn’t HLHS anymore.  If anything, we are now told that she has Shone’s Complex, which I need to start researching.  All in all though, her heart function looks GREAT!! 

Aurelia’s story is still unfolding. She is our miracle girl, who has had 14 surgeries and has overcome some incredible odds. She is a happy girl who has taught us about love and courage. She is the bravest person I know and I am so proud that she is my daughter.

MEET JACKSON!!!

My pregnancy was pretty uneventful.  I have heard more than once that I do pregnant well, with no real complications.  In early June, we found out that the baby was a boy, and we decided to name him Jackson.

After my routine 20 week ultra sound, my OB came to me and said that there were some issues with his heart, and she wanted us to see a perinatologist.  She said they could check everything out.  Some of our Downs risks were a little higher based on some of the things the ultra sound tech saw.  And she couldn’t quite see all four chambers of the heart.  And she thought his stomach was empty, which might mean he had swallowing issues.  So I called and set an appointment for June 13^th.

That morning as I drove to the appointment, I called my mom.  I was scared and trying not to worry.  She said to me that things would be fine, and to call with the good news later that afternoon.  Chris met me there and we went inside.  The doctor came out to meet us and lead us into an ultrasound room.  I laid on the table and we talked.  He said he would start with the fun stuff first.  He confirmed we were having a boy.  He scanned and we talked and joked.  And then he got very quiet.  Eerily quiet.  And focused.  And serious.  I started to cry.  I knew something was wrong.  I held Chris’ hand and wiped away tears.  He turned to us and said “I think you can tell from my silence that something is wrong.  Your baby has a heart condition, called Double Outlet Right Ventricle.  Basically part of his heart didn’t develop”.  There were many more words said after that.  I don’t remember most of them.  He was so kind, he even said we would not hear most of what he was telling us, and so he wrote his cell phone number on the back of a card and told us to call anytime.

He stepped out of the room and made a call to Children’s Hospital and got us a same day appointment with the cardiologist.  Chris and I had driven separate.  Chris had come in his work truck and so he had to go back to the shop and drop it off.  He was going to meet me there.  I called my dad as I drove, and I cried.  I was so scared.  I didn’t know what any of this meant.  But my worst fears were playing out in my mind as I drove.  Walking into the front doors of Children’s, I looked around and saw kids everywhere.   Some were in wheelchairs.  Some in walkers.  Some in cute little red wagons.  Some walking.  Some sleeping in their mother’s arms.  But, what I noticed most, was they were all smiling.  Even the really sick ones.

I headed up to the 3^rd floor and waited.  I tried not to cry.  Finally a sweet nurse named Keri came out and introduced herself and we walked back to another ultrasound room.  They scanned and talked and scanned some more.  Jackson wasn’t in a very good position and so they sent me down to the cafeteria.  Told me to get some food, walk around a little, and come back.  We came back up and they scanned some more, and then they sent us to a family counseling room.  It was not the last time we’d sit in that room.  The doctor came in and she drew pictures and she talked in words we didn’t understand.  We sat there, listening, but not really hearing.  Not processing.  She told us that we had three choices.  We could send him for a set of 3 open heart surgeries, we could terminate the pregnancy, or we could do comfort care and let him pass once he was born.  The only option we immediately turned down was comfort care.  We both said that either we were doing this, or we weren’t.  But watching him die was not an option.  We left with our drawings, still completely numb.

Over the next forty eight hours, Chris and I cried.  We talked.  We mourned.  We sat in silence together.  We were angry together.  We did our best to parent Mason and to go to work.  Our minds a million miles away from either task.  I flip flopped a hundred times a minute on my choice.  I could justify either option in my mind.  I checked out of my pregnancy.  I stopped noticing when he moved and kicked.  I stopped touching my belly.  I couldn’t handle acknowledging him when I wasn’t sure we’d ever get to meet him.  I begged Chris to end it immediately.  I couldn’t go on for days with him inside of me if we weren’t going to move forward.  I researched abortions and clinics in Denver that would do one this late into my pregnancy.

On June 15^th, we made the decision to get an amnio done.  The same perinatologist met us at the office and performed the test.  He was kind, and tried his best to make the mood light.  He said he would send out a “fish” which would test for the 4 biggest risk factor issues we could have that would cause a heart defect.  He was honest and told us that if any of the 4 came back, he would encourage us to terminate.

June 16^th was a Saturday, and he was on vacation, but he called us anyways.  He said that our “fish” had come back clean.  Chris and I were deflated, we were looking for an easy out.  We didn’t get the free pass we had wanted.  And now we were faced with making a choice.  An awful choice.

June 17^th was Father’s Day.  I started the day determined not to talk about this.  The giant elephant sitting in the middle of our lives.  But we found ourselves talking and crying.  We both agreed that we would terminate the pregnancy.  We just couldn’t do this.  And then we called our parents.  Chris called his mom and I stepped outside and called mine.  My mother is strong and brave.  She’s also a nurse, and so she could make sense of all of this.  She had talked to the perinatologist and the cardiologist and she made it all sound ok.  It was do-able.  We could have him and he could have the surgeries and he could be ok.  They would come and be here and help with Mason.  I confessed to her that I didn’t think I could make myself walk into a room, and kill my own child.  And I that instant, I knew what my choice was.  God had given us this baby.  And if he was going to die, it was going to be God’s choice.  Not mine.  Through all of my flip flopping and mind changing, Chris had made his decision as well.  He wanted to move forward and give this little guy a chance.

We started making plans to move forward with the pregnancy.  The rest of our amnio came back clean and we breathed a sigh of relief.  We went back to Children’s for more echo’s and ultrasounds.  We met Dr. Adel.  He was kind and caring.  He explained things in a way that made sense.  He knew that our first meeting had been horrible, and that we’d left it not really grasping any of what was said.  So he started over.  He spent hours with us that day.  I instantly trusted him.  He held me while I cried and told me that it was going to be ok.  That we could do this together.  He was the first person to tell me that this wasn’t my fault, and that it was ok to mourn the loss of the healthy child we thought we were having.

The remainder of my pregnancy was spent with multiple OB appointments, perinatology appointments, and echo’s at Children’s.   I got really good at reading the faces of the technicians as they scanned his heart.  With each appointment, I had the hope that they would discover his heart was whole.  That they had made a mistake.  Jackson wasn’t growing as well as they wanted.  He only had 2 blood vessels in his umbilical cord, and so I was constantly told to eat more and exercise less.  Anything to get him to grow.  He needed to be big and strong for what he was going to endure.

It was decided that I would have a repeat c-section and deliver him at Children’s Hospital.  We would have a room full of doctors and nurses ready to step in at a moment’s notice.  It wasn’t the birth experience I wanted.  But it was what was best for Jackson.  We set the date of October 11, 2012.

Chris and I got up early the morning of the 11^th and headed to the hospital.  My parents and brother would come later and meet us there.  We checked in and did our best to joke and laugh.  As long as Jackson was inside me, his little heart wasn’t in danger.  He was safe and secure.  When they finally came to get me, I started to cry.  Walking myself into that operating room is one of the hardest things I’ve ever done.  I felt like I was putting Jackson in danger, and it hurt so bad.  It wasn’t the first time I felt like a bad mom.  My OB had traveled to Children’s to deliver Jackson.  The perinatologist was there to assist.  He had told me earlier in the morning that today was his birthday, and that was sure to be a good sign.  Jackson was delivered at 9:45 am and swept away before I could even hear him cry.  Chris went back and forth, from Jackson’s side to mine, telling me what he looked like and what they were doing.  I begged to know every detail.  They finally let Chris bring Jackson to me and I was able to see and kiss my son.  He was small, but beautiful.  I instantly loved him.

When I came back to my room to recover, they brought Jackson in.  I was able to hold him and snuggle with him.  We passed him around the room a little and then I held him and tried to memorize every detail about him.  Those two hours passed in an instant and they came and whisked him away to the CICU down on the 3^rd floor.  My parents went down there and said that he was comfortable and stable.  I finally got down to see him later that afternoon.  It was a long ride in my wheel chair, but holding him was worth the pain of getting out of bed.  We had all noticed that his ears were shaped a little funny, but everyone said he was just squished inside of me.  We all noticed that his left eye didn’t seem to open as much as the right.  They told us he was just tired.

We spent the weekend in the CICU, holding him and getting to know him and waiting for the bomb to drop that they were taking him for surgery.  I missed Mason terribly.  I’d never spent this much time away from him and my heart longed to hold him and kiss him.  He visited some and even got down to see his brother for the first time.  His smile was one of pride.  I will never forget that look.  He looked down at Jackson as if to say “you are my little brother, my forever best friend, and I will always look out for you”.  He is the sweetest most affectionate child.  Having a little bother who is sick will make him even more empathetic and patient.

Chris had gone home the night of the 12^th to be with Mason.  I was in the CICU with Jackson when a little girl coded.  Doctors and nurses rushed to her room.  Her parents cried openly and loudly.  I knew she was sick, I’d been watching all weekend.  But then she died, right there.  This little 3 year old girl who was less than 100 feet from me.  Jackson’s nurse and I both weren’t sure what to do with ourselves.  Did we stand there?  Did we watch?  Should she help?  I told her I needed to leave.  And then I turned right back around and stood over Jackson, as if protecting him.  I cried for that little girl and her parents.  I asked God to be gentle.  They finally got her stable and I left Jackson’s bedside.  That little girl passed away in the middle of the night.  Her room was empty the next morning and I said a prayer for her family.

Jackson’s hearing test was October 13^th.  She started with his right ear.  I asked how it was looking, and she told me it was fine, he passed, and I should go get some lunch.  I came back half an hour later and she told me that he had mild to moderate hearing loss in the right ear.  And that he had profound loss in the left ear.  My world started to unravel.  Chris was at work.  How was I going to tell him that his child was deaf?

The morning of October 15^th, we were all in the CICU.  I held Jackson skin to skin and soaked in every inch of him.  The surgery date had come.  The speech and occupational therapists came.  They were worried about Jackson aspirating on bottles and encouraged us not to feed him by mouth.  Then a geneticist came by.  He looked at Jackson and asked us a few questions.  He stepped aside when the ophthalmologist came.  She dilated his eyes.  She told us that he had a colaboma in his left eye and that his right eye was smaller than the left.  She said she couldn’t say for sure if he had any vision at all and might be blind.  The fabric of my world started to fray some more.  Then came the ENT, who told us that Jackson had coanal atresia and that his nasal passage was blocked.  He was put on oxygen to help him breath.  The fabric ripped and tore.  And finally the geneticist came and told us that Jackson had CHARGE.  He said it was a genetic birth defect that affected many areas.   He would have significant vision and hearing issues.  His airway would be small and compromised.  He would be small and skinny and struggle to gain weight.  His genitals would be adversely affected.  He might not go through puberty without medication.  He would be immune deficient.  The fabric became single strands of thread.  Chris and I held one another and sobbed.  I was angry.  We had done an amnio and they had told us that everything was fine.  That it was just his heart.  Finally the CICU doctor got wind of what was going on, and chased them all away.  She was genuinely sorry and empathetic that they had done this on the day of surgery.  I thanked her for saving us.  I don’t think we could have taken one more person lining up to deliver bad news.

And then they came to take Jackson to surgery.  He was to have a band placed around his pulmonary artery to slow the flow of blood to his lungs down.  Otherwise, he would drown in his own blood and die.  There wasn’t a single sliver of hope left in us when they wheeled him away.  We were beaten and battered and devastated.  I could find nothing positive left in the world.  So we sat and we waited.

Esther came out and pulled Chris and I aside.  I took Chris’ hand in mine, sure that she was going to tell us that he had died.  The walk to that room seemed like an eternity.   She said that Jackson was stable, but, that when they inserted the breathing tube, his belly had filled with air and they didn’t know why.  They were going to bring in an ENT and scope him and see if they could figure out what was wrong.  We walked back outside and told my parents.  And we waited some more.  Esther came out and again pulled Chris and I aside.  Again I took his hand and we walked.  She said that they could find no medical explanation for the air, and that he was too unstable in that condition to operate and they were cancelling it.

I don’t think it even registered  in my brain that we would have to hand him over again.  It took about an hour before we were allowed back to see him.  Nothing prepares you for seeing your child with a breathing tube down their throat, asleep.  I took a deep breath and rounded the corner.  The guilt was over whelming.  I longed to hold him and comfort him, but I wasn’t allowed to move him.  All I could do was touch his arms and legs.  He was so warm from the heater above him.  His face was puffy and swollen.  He had a yellow piece of paper taped above his head that read “critical airway”.  They had graded him a 3.  Only thing worse was a grade 4.

The cardiologists and surgeons and anesthesiologists all came and told us that they had no idea what had happened.  They had no medical explanation for the air in his belly.  They were sorry and baffled.  I knew that God had seen us and knew we couldn’t do it, knew we weren’t in a good place.  He stepped in and gave us a much needed do over.

The next morning I came into the CICU to find his surgeon at his bedside.  And they told me they were going to do surgery that day.  He had had some cancellations, and Jackson had been stable all night.  The decision was made.  I frantically started calling to get Chris back to the hospital.  For the longest time, it was just me and my dad.  The mood was light, and I even found myself joking a little with the social worker.  Chris arrived and we said goodbye to Jackson, again, and they took him back.  We found ourselves again sitting and waiting for updates.  Esther rounded the corner, and immediately held two thumbs up.  I was beyond relieved.  She said there had been no air in the belly this time, and they were proceeding with the surgery.  Jackson sailed through it with no complications and the surgeon was quite pleased with the bands.  We were able to see him a while later.  Now added to that breathing tube down my child’s throat, was a band aid that was the length of his chest, covering the place where they had operated on his tiny heart.  I couldn’t bring myself to touch it.  I spent that night at the hospital, to be close, just in case.  I was in the CICU with Jackson when Dr. Adel came by.  I was starting to regret my decision to spend the night there by myself.  We talked and I cried and he listened.  He is such a gentle and caring man.  He assured me that just because Jackson was special, that didn’t change anything as far as he was concerned.  It just made him more special.

It took a few days to wean Jackson from the breathing tube.  He was finally at a point where he was breathing around it, and needed to be extubated.  Looking at your child, awake, and crying, but with no sound coming out of their mouth, is not something I was prepared for.  I mean, I’d heard about it, and I knew it would happen.  But in the moment when it did, I wasn’t ready.  My dad sent me off to the waiting room and he bravely stayed with Jackson.  I came back to find him awake, and on oxygen.  He ultimately ended up needing more support than that, and was placed on a CPAP machine for a day or two, and then back to oxygen.

Jackson was born on the 4^th floor of Children’s hospital in an operating room on October 11^th.  He spent the next 11 days in the CICU before being moved to the 9^th floor.  After a few days on the 9^th floor, he was taken down for surgery to place a feeding tube into his stomach, called a G Tube, so that we could take out the NG Tube that was in his nose.  He slowly recovered from that, and we finally were allowed to go home on November 5, 2012.  26 days after he was born.

We have been in patient twice since being released.  When he gets a cold, his little floppy airway can’t keep up and his oxygen sats tank.  He is currently set for his Glenn in mid April.