Soak Photo

Destination Del Rio

Two and a half years have gone by since Jude went to heaven. What a whirlwind of time it has been. Life is now divided into two parts; before him and after him.

Grieving hasn’t been linear. It was (is still at times) exhausting: mentally, physically, emotionally and spiritually to continue on; rebuilding this new life without him. Our Faith, and family have helped us each step of the way.

Documenting life for the best of friends and family in the midst of it all was life giving. It has always been a creative outlet that continues to bring me so much joy. Making this business official is a huge step. Soak Photo was dreamt of thoughtfully and created over the past seven years.

This Journal will continue to be a space where I share my personal story and now professional photography albums. Thank you for being here!

I couldn’t delete these words. They hold value to my why and the passing of my son has molded and shaped me into who I am today.  This takes you back to the beginning. A very personal, heartfelt reflection.

One Month

It’s fitting that it rained today. It rained the day we found out about Jude’s heart defect. It rained the day of his first and second heart surgery as well as the day he passed.   It has been one month of navigating this new life as a family of four. It is in the calm and quiet that my mind starts reflecting on the year we have had and that is when an overwhelming amount of emotions come because I can’t believe all that has happened; yet it did.

From January 10th, 2017 onward, life has felt like a tidal wave that just kept growing. For us, strength was not a choice. It was a lifestyle we had to lead for everyone in our family. We had never been more grateful for every moment knowing we were facing the uncertainty of time. Time was sacred and because of the daily help we had by family and friends, time was enjoyed as best we could riding out this wave.  Halloween, Thanksgiving, Christmas, and the New Year came and went which meant the second surgery date was here.

Jude hit every goal. He ate and gained weight like a champ. His pulse ox was going at a normal trend downward. He was doing so well, his surgery was even pushed back to a later date. We went into the Glenn surgery feeling “prepared”, feeling optimistic and feeling hopeful. Yet, there was always an uneasy feeling of underlying fear that things could change at any time.  Our love for Jude and the life we dreamt to provide him was the anchor that kept us grounded through it all.

The surgery was successful. He was breathing on his own. But, his heart function took a turn on day three and he really never recovered. The month+ that followed was a blur and then the tidal wave finally crashed. With my sons last breathe; I felt myself somewhat catch mine.

Just like that, it was done. No more long drives to LA, no more needing so much help to care for our family, no more meds or germ patrol, no more doctors visits or future surgeries, no more seeing our child endure.

In one month we have also been overwhelmed with the greatest amount of love and support from people of all different times in our lives. We have gained strength when we didn’t think there was any left. We have reflected. We have cried and cried some more.  Jaxon and Camden have and will continue to be our sunshine. They are keeping us going.

Lastly, in one month, we have peace. Peace that he is healed. Peace that we will see him again in heaven. It is taking great courage and faith daily to let go of what we cannot change and great perseverance to keep moving forward.  But we will continue; for our boys.

Our Sweetheart

I sit here and stare because like so many of you have commented, there truly are no words that will help this pain we are feeling.  We are overwhelmed by the outpour of love and support.

A fellow heart parent said, “No wonder it’s such a beautiful day today, Jude is showing us his new, beautiful heart from the heavens!” We looked up and that could not be more true.  Although it was the hardest thing we ever had to witness, Efren and I had time reminiscing on eight beautiful months where Jude wasn’t hooked up to any machines, and where we were able to stare and kiss and love on our beautiful boy before he left us.

My Aunt Denise said, Many of us have suffered the heartbreak of infertility, of miscarriage; but thankfully few have lost a baby they have held and snuggled and loved and laughed with.

A mother that has lost her sweet baby told us, The one thing I have found is if the pain brings you to your knees, you find strength and hope thats beyond your own. It’s those that stand up during hard times thinking they can do it on their own that suffer.

A girl from Humboldt that both Efren and I coached who has lost her twin sister as well has her mother said that it never really gets better, but you learn to handle the pain.  We are beginning a new chapter in life now; learning to navigate being a family of four. The outpour of love is lifting us up.

One Tough Dude

Written by my husband Efren: It is day 17 after his 2nd open-heart surgery.  Since he had such a successful inter-stage, the time in between his first and second surgery, his cardiologist and surgeon both expected him to have a 1-2 week hospital stay after his Glenn if all goes well. That was the focus and goal but, like many times during this heart life, expectations and reality are very different.  A day after the surgery the team took an echocardiogram (ultrasound of the heart) and were very happy with the surgery results.  But, two days later, they found a valve that began leaking, fast forward to today, and Jude is now in acute heart failure.

I’ve been by his side every day since surgery and there is no doubt he is one tough dude. He has been poked, prodded, and temporarily paralyzed numerous times since he is experiencing delirium.  X-rays and Echos are being done frequently, and dozens of specialists enter the room throughout the day to evaluate Jude in their niche of the Cardiothoracic Intentive Care Unit. Children’s Hospital of Los Angeles had an amazing reputation prior to us being here, and they live up to it daily. There is a lot of, “storm” within the halls, and their staff continuously do a great job keeping things calm.

Since he still has a breathing tube in, the only way of communicating is through his big brown eyes.  A couple of visits ago, Jude shed a tear after seeing his Mama. It was a pretty special moment.  We’ve all shed many tears.  He desperately wants to get out of his bed and be held which isn’t an option right now.  The worst part of my day is witnessing him speaking with his eyes, “Dada, help me. Get me out of here.” Those are by far the toughest moments but I continue to focus on picturing the numerous stroller walks to the park we will make in the upcoming months, and the joy he will have once again.

As the father and leader of our family, I can’t help but to still feel blessed. My biological father walked out on our family when I was 3 years young.  I have dreamed about being a father ever since I was old enough to comprehend his actions. I am here with Jude, by his side daily, and he knows it.

While I have been at the hospital, Kristina has been at home taking care of Camden and Jaxon. She has done and continues to do a remarkable job keeping their minds off the fact that Jude and Dada are not home. I’m confident Cam and Jax do a good job making Mama smile and laugh too (great job, boys!).

There are several obstacles he has to overcome before talk even begins about getting him home. It is a fine balance that the doctors are trying hard to find in trying to wean him off supports and medications while still giving him enough to stay and remain comfortable.

I continue to be optimistic and hopeful. Thessalonians 3:5 states, “Now may the Lord direct your hearts into the love of God and into the patience of Christ.”  We have a long road ahead of us, and the doctors don’t anticipate Jude getting out of the hospital anytime soon. He is on medicine to help the leaking valve, and they are trying their best to avoid another surgery.  So many people have reached out to us with the utmost sincerity; people from all different times in our life.  There have been so many people sending prayers, warm wishes and positive thoughts.  It continues to lift us up and fuels us to keep moving forward.

This post has been hard to write. I have been thinking about it, talking about needing to do it, yet not accomplishing it which is very unlike me. I even tried to pass it off to Efren which was declined instantly and I am glad he did.  This has been a year of really high highs and really low lows.

Best of 2017

It was  a year of having my faith tested. This photo was taken the day after one of our best friends got married. We found out about the heart defect two weeks prior. The distraction of catching up with old college friends was a relief, but as soon as we got back in the car to go home and our mind started drifting away from the night before, our reality hit hard. We decided to take Skyline Boulevard on our way back from Half Moon Bay and drove upon this. It was the first moment I felt God giving me a sign that it would be okay. I immediately told Efren to pull over and in the middle of the road; I captured this.

Camden was my sunshine. He made me genuinly laugh when I didn’t think I had it in me. His chubby little hand pulled me through the toughest of days. He needed me just as much as I needed him.

Danielle Walker, writer of Against All Grain posted about griefs dichotomy. She wrote, “It seems impossible to have so much joy and gratitude in the same space as so much pain, but they can co-exist” and in this picture, they’re both ever present.  This pregnancy was hard and I felt robbed of the joy I should have been feeling.  It was filled with the stress of moving quickly, selling our condo, doctors appointments, processing, crying……and more crying. I was induced and delivered both boys, at 38.3 weeks in front of no less than 25 people. In the recovery room, holding Jaxon, I felt so much joy that the delivery was quick, and there were no complications.  Watching Camden meet his brother was priceless.  But, this picture was missing Jude who was in the NICU and the inevitable surgery was looming in the back of our minds.

It has been a year of extreme thankfullness. I read on @heartkids, “I swear to you that they will change your life forever. These children with broken hearts will wreck you in the most beautiful way. You’ll never learn to surrender more when you hand a child into a surgeons arms. You’ll never be more terrified than when you love a child you could lose. You’ll never be more grateful for every moment when you face the uncertainy of time.” Those words are real. This isn’t just a picture of me holding my baby. This was freedom- my freedom to be a mama simply holding her baby for the first time after having open heart surgery because he survived. Too many families do not have that freedom and that is not lost to us.

This was the year, five years later to be exact that the words, “In sickness and in health” which we promised eachother on our wedding day, came into action. We had a real and honest eb and flow of emotions; being strong for the other when needed. Most of the time when marriage is rough, one person did something to effect the other but with this, we were both experiencing this in the same and different ways. I have such a new respect for Efren as a man, as a father and most importantly as my husband.

This is the year I became a mother to three little ones. I no longer had enough hands to hold all my babies. Through that, it was also a year of support; of literally feeling the strength to keep going through your acts of service as well as my own personal growth of being okay with accepting help in all forms.

Lastly, this is the year we became a family of five.…. Efren and I look at each other and still shake our heads in disbelief. We did not get to choose this life. It caught us off guard and unprepared which was hard; especially for our type A planner personalities. “To suffer, that is common to all. To suffer but still keep your composure, your faith, your smile, that is remarkable. Pain will change you more profoundly then success or good fortune. Suffering shapes your perception of life, your values, your priorities your goals and your dreams.”-Pastor David Crosby…. And for that, I’d choose this life and this year over and over again because these boys make it all worth it.

The new year will bring new challenges quickly.  Jude will have his second open heart surgery at the start of the new year.  We found so much strength through this community.  From the bottom of our heart, we thank you for the support, love and prayers.

We made it to what I have always called, “The goal month”.  The mantra that we just need to make it to November has been something that has been repeated SO many times to inform as well as remind that there IS an end to this inter-stage.

It has been hard having a feeling of getting through it and wanting it to be done, yet also wanting time to go slow and to remember it and to capture it and to enjoy it because they are only this little so long.

My Aunt sent me this article  written by Grace Emily Stark, and it hit me in the best of ways.  She wrote,  “I’ve found myself becoming overwhelmed and exhausted with the responsibilities of my daily life, with the nagging sense that I am failing at it all.”  This life is nutty, even with the BEST support in the world.   We have had the greatest, AND constant support from my mother, who has practically paused her life to help me get through mine, my father along with my Grandma Niklas, Aunt Mary and Aunt Kelly who come over to help each week without fail.

But, this life is constant and it is sleepless and we are still in inter-stage which is stressful. The mortality rate is still high and the common cold will land Jude in the hospital because his lungs can not handle any sort of respiratory distress. So, becoming overwhelmed and exhausted by daily life has been creeping up a lot more frequently as we got closer to the goal of November.

Today we met with Jude’s heart surgeon who performed his first and will perform his second open heart surgery.  The good news is that Jude is rapidly growing and putting on weight just recently reaching 15 pounds!  His pulse oxygen levels have steadily decreased but are not at a point where surgery is necessary right away. The Doctor stated, “The bigger Jude is the better, but, if he needed surgery tomorrow, he is big enough,” which is a huge blessing to have made it to this point where he is viable for surgery.

So now……….. we wait.  We keep on tracking and celebrating his progress in weight gain, and watch closely as his oxygen levels decrease which is the norm and WILL eventually happen.  When that time comes, he is ready for surgery.

In that article Stark wrote about the St. Augustine quote from his Confessions, “… for You have formed us for Yourself, and our hearts are restless till they find rest in You.” The article concluded in explaining that to rest at Christ’s feet or in God’s arms – to “choose the better part,” takes a trust so radical, so complete, and so pure that the One who needs no rest only desires that we rest completely in Him.

To not have a timeline, especially during this holiday season, is hard.  We feel like life is somewhat on pause, yet we are trying to live it to the fullest. Since Jude staying healthy through this cold and flu season is imperative, we are avoiding crowds and hitting up every park in Orange County carrying hand sanitizer as we go.  The fresh air and outdoors has always been our saving grace and we have enjoyed exploring our new home town. Thank you all for the messages, letters and prayers.  The support we have felt through this all has lifted us up so many times.

This is what we have been praying for. All five of us under the same roof!    If I am being brutally honest, I have to admit that when Efren called to tell me Jude was coming home, I had a moment of such relief and happiness followed quickly by a feeling of, “Oh shit, here we go.” Three kids under two is hard.  Twins are hard.  Add on a heart defect and we had the trifecta.  Sleep deprivation was in full effect already for both of us. You don’t realize how exhausting stress is until you have a little reprieve from it. The hospital life was exhausting for all of us; especially Efren who moved in to stay with Jude.  We were and are still trying to be the most present parents we can be to Camden as he transitions into life as a big brother with two little ones home.

Jude was now entering interstage. The “interstage” period between the first heart surgery and the Glenn operation (second heart surgery) is such a high-risk period. The mortality rate during this time period is estimated to be 10-15 percent. To say we were and are nervous is an understatement. This left us as a family pretty isolated for the time being to ensure Jude stays healthy.  Any sickness could be extremely detrimental and would land us back in the hospital.

Jude has a strict medication schedule. We have to check his pulse oxygenation levels three times a day and track his weight each morning.  Weight gain is beyond critical during this time so we fortify his breast milk with formula. I call it his protein shake getting in those extra calories. Doctors visits are weekly.  Thankfully, the interstage team at CHLA respects Jude’s cardiologist in Orange County so we only have to drive to Tustin instead of LA which is a HUGE relief.

 The days and weeks have past and Jude has been gaining weight and getting stronger daily. It really does take a village and I must say, ours is top notch. They’ve visited us, prayed for us, supported us; they’ve fed us, sent gas cards, diapers, wipes and wine🙌🏼 but most of all, they’ve simply loved us. Our hearts, and hands, are so full and I can honestly say that we could not have gotten to this point without their support.  There are not enough words in this already long post to thank my Mom, Dad, Grandma (GG), Aunt Mary and Aunt Kelly enough for coming weekly to  hold a baby . That is another post all on its own.

We now prepare for the next step which is his heart catheterization on Tuesday, September 19th.  During this procedure the doctor takes a catheter and runs it through the artery in Jude’s leg all the way up into his heart and through his arteries. A doctor that specializes in caths does this procedure during a live video type of x-ray, so he can see his heart function in real time. It’s pretty invasive as you can imagine. Nothing is simple with Jude so once again we are requesting all the prayers we can get because they ARE working! The heart catheterization will determine the date of  the Glenn, Jude’s next open heart surgery.

I honestly feel that Jude progressed so quickly because Efren was at the hospital and by his side 24/7.  Being his advocate, his cheerleader and sole bottle feeder was huge.  Consistency is key and Jude had that.  He made his goal of keeping down enough milk and gaining weight three days in a row! After 41 LONG days, FINALLY, discharge day was here!

There was such a mixture of emotions while leaving the hospital.  Relief mixed with anxiety that it is now all on us.  Extreme happiness yet extreme sadness as we walked past the rooms of children who may never get to have this day.  That was not lost on us and we continue to pray for those that we met while there.  There was also a little bit of anger that crept up as we knew we will be back here in a couple of months to do this all over again.  This was the end of the first leg of this heart life.

From the doctors, nurses, occupational therapists… the list goes on an on and we feel so grateful for the care Jude received at CHLA and are thankful he will be having all his surgeries there. It made the train rides and long drives somewhat bearable.   The staff was so attentive, caring and gave us a sense of calm in an environment that is nothing close to what that word means.  Now, we have a new title of, “nurse” in this heart parent life. Wish us luck as we embark on three under 2. Although it will be hard, we are so happy that this is our reality!

Jude was transferred to the Children’s Hospital of Los Angeles where he had the Shunt Procedure at six days old.  The surgeon inserted a shunt in order to pass blood into his lungs.  This was the toughest day of our lives.  Seeing our little guy post-op hit us like a train. I did research; I looked at tough pictures of other little ones who went through the same surgery; but NOTHING can prepare you for seeing your own child.  All you want to do is pick them up, rock them, hold them and comfort them; yet we couldn’t.

The Ronald McDonald House had a wait list so Efren, Jaxon and I we were driving to CHLA daily to be with him.  Thank God Jaxon is the chillest baby ever and doesn’t mind the commute.  We would leave as morning traffic died down and head home before rush hour began which lets face it; in LA, there is always some kind of traffic.  We would get home and be the most hands and attentive parents to Camden as we could until his nighttime routine began. Sleep deprived and emotionally drained, we somehow continued on and the days passed.

Camden was very confused with us coming and going so frequently.  He was not handling it well even though my parents were being AMAZING taking such great care of him and keeping him busy daily.  I was also pushing myself too hard and not giving myself time to recover from their delivery.  My body gave me a serious reality check and I knew I needed to slow down.  At that point, we knew we needed to make a change, so we decided to divide and conqur. I stayed home with Jaxon and Cam while Efren commuted daily by train to CHLA and eventually stayed there overnight as Jude was weaned off his medication and progressed. The pull out bed, cafeteria food and face time phone calls became the norm for Efren as we continued to take one day at a time.

 Discharge was based off of Jude continuously gaining weight and keeping down his food.  I was a pumping machine delivering that liquid gold. It was the only thing I could do for him and that is what kept me religiously doing it every three hours.  There was a setback when Jude’s stomach had an infection and had to be put on gut rest for a week.  Although remedial in the grand scheme of things, not eating for a week was frustrating as being apart was wearing on us both and no progress was being made during that time.  We were bummed to takes steps backward toward getting home, but he was still alive; he was still here with us and thats what kept us going.  Once Jude was able to eat again, he was a champ! He upped his intake and kept it down. We knew we were getting closer to getting him home.

Navigating

Nothing can prepare you for the news of your unborn child having a heart defect.  I went through days of wanting to know all the information I could; and days when I struggled.  Camden was the one that honestly kept me going when Efren was at work.  Being busy helps and thats what we were.  Packing and moving our life down to Southern California plus three very important weddings kept us on the go.

We moved into my parents house as we knew we would need constant support and help; especially when the boys arrived. I felt like a ticking time bomb; wanting to keep them cooking for as long as possible but also wanting the boys make their appearance so we could stop the over-thinking and deal with this next chapter of life.

  This pregnancy was hard.  The joy was consumed by my thoughts.  Thoughts of Jude, his life ……our life and what that would look like now.  I battled so many feelings of bitterness, jealously and depression. We had to continue to let our faith be bigger than our fear and embrace the uncertainty.  1 John 4:4; The Lord is greater than the giants you face. That was hard at times; actually all the time and as I write this it still is something I am holding onto tightly.  My induction date was set for May 17th.  We tried our best to enjoy the last few weeks as a family of three.

Multiple

Once moving down to Orange County, I quickly switched doctors.   It had been over a month since we received the news that Jude had Transposition of the Great Arteries. I felt like I was in auto-drive being so busy packing and taking care of Camden, the news that Jude had TGA somewhat sunk in.  I cried more in those weeks then I had in my lifetime.   I did my research and knew it would be a hard start, but after just ONE surgery, he would be okay and live a relatively normal life. Efren was still finishing up packing in San Jose so my mom came with me to the first appointment with the high risk pregnancy doctor in Irvine.  Dr. Leo began scanning and once he was done, he explained that since the initial scan in San Jose the heart has grown and he is able to get a clearer picture.  He is now seeing MULTIPLE defects. Numb was how I could describe the way I felt.  How could it be even worse?  How could there be more? How was I going to tell Efren this news over the phone? I kept myself relatively together but pretty much broke down right as I walked out of the hospital doors.  What a sight I was as none wants to see an extremely pregnant woman crying in a hospital hallway.  My Mom drove home and as she was backing out of the parking spot, she almost clipped a car behind her. I think we were both taking in the gravity of this new news.

Jude’s heart defect in simple terms is a hypo plastic right heart, with transposed great arteries and tricuspid atresia.  Basically what this means is that he will be born with half a working heart. Instead of two ventricles (bottom chambers of the heart), he has one. The tricuspid valve did not fully develop which left the right ventricle under-developed. That is what his aorta is connected to, and the pulmonary artery is connected to the left ventricle which is opposite of a normal hearts anatomy.

Born with these defects, there is no way for his heart to pump blood into his lungs to oxygenate his body in a natural manner.  To remedy that, Jude will undergo a series of three surgeries.  The first is the Shunt Procedure which he had at SIX days old.  The surgeon inserted a shunt in order to pass blood into his lungs.  This will allow Jude to breath on his own allowing time for him to grow and strengthen in preparation for his next open heart surgery; The Glenn.  This surgery is done around 3-6 months old and allows for more blood to flow into the lungs and upper body.  The third and hopefully final surgery is The Fontan.  As his body grows, the need for more oxygenated blood increases.  The Fontan surgery is done so that almost all the oxygenated blood coming back from the body goes to the lungs. This will take place around 3-5 years old.

Although we are fortunate that there are medical interventions, they are not a cure.  Jude will live with a single ventricle heart which will limit what he is physically capable of doing.  As his parents, we are going to give him the best life possible for as long as God allows him to be here with us on earth.

Weeks went by and the shock of having twins wore off.  Like most, I was so excited our anatomy scan appointment finally arrived so we would know the gender and I can start preparing for their arrival a little more. The technician started scanning and she was able to tell us with certainty that two more boys were on the way.  She called our doctor explaining that together they would need to go over the scans but was unable to get ahold of her. She continued scanning and tried calling again. When she couldn’t get ahold of the doctor, she left the room to go find her. I found it a little strange but appreciated her urgency since Camden was about done and Efren had taken him for a walk.   When the technician and doctor both arrived back into the room,  I felt by the look on their faces that something was wrong.  Another doctor arrived shortly thereafter; I oddly remember putting my hand on my racing chest.

I called Efren and he immediately rushed back in the room and that’s when our doctor explained that baby A has a heart defect. We immediately called Efren’s sister to come and get Camden, who at that time was beyond over being in the small doctors office. We scheduled an appointment with the cardiologist later that day since both of us did not want to wait any longer to get more information.  A kind nurse brought Cam a red train since all the toys we brought were old news by then. That train has become a treasure to us. It is a constant reminder of that day,  to keep chugging along through the waves of emotions we were, and are still constantly facing.

This news shocked us to our core. I will always remember the crazy storm San Jose had that day.  Right as we went out of the hospital doors, the tears started flowing like the rain that was pouring down on us as we walked in a daze to the car.  Drenched, we got in and just sat in silence.  Our life had just been flipped and there was nothing we could do about it.

With no second thought, we knew we would need help and support to get through this. We immediately went into action and put our condo on the market, packed up our belongings and made the move to Orange County.

I See TWO

When you think of getting pregnant, most parents will say they just want a healthy baby and an easy pregnancy. From the first time you see those two lines, to the first doctors appointment where you officially hear the words of confirmation come from the doctors mouth, I think every woman deep down is a little nervous; nervous that everything will be all right and your not dreaming that your pregnant.   When you hear the heart beat for the first time, you are able to breathe a little easier.   For me, that easy breathing lasted all of about five seconds before I saw the screen split. I watched Efren, who was holding Camden, immediately turn to our doctor, turn back to me and we both turned back to her to get some sort of explanation of what we were seeing. She exclaimed, “I see two!”

Efren became this ecstatic Dad while I was laying there in disbelief. When I heard the second heart beat, shock set in. My type A personality brain immediately began scrolling through how so much of our life would change. My brain was like a spinning rolodex that wouldn’t stop. I think I semi-blacked out as we scheduled our next appointment and walked out of the room while Efren was singing to the beat of the song, “Shots” changing the lyrics to Twins, twins, twins twins, twins telling anyone and everyone the news. I followed closely behind still in disbelief that this was our new reality. At that time I thought having twins was going to be our biggest hurdle. The mere thought of having three babies under TWO and how we were going to survive was enough to make me break down on the way home. Looking back, I wish I would have enjoyed that moment more; enjoyed knowing that at that point, they were developing and life was good. That there really was no true reason to worry.

Destination Del Rio

Two and a half years have gone by since Jude went to heaven. What a whirlwind of time it has been. Life is now divided into two parts; before him and after him.

Grieving hasn’t been linear. It was (is still at times) exhausting: mentally, physically, emotionally and spiritually to continue on; rebuilding this new life without him. Our Faith, and family have helped us each step of the way.

Documenting life for the best of friends and family in the midst of it all was life giving. It has always been a creative outlet that continues to bring me so much joy. Making this business official is a huge step. Soak Photo was dreamt of thoughtfully and created over the past seven years.

This Journal will continue to be a space where I share my personal story and now professional photography albums. Thank you for being here!

I couldn’t delete these words. They hold value to my why and the passing of my son has molded and shaped me into who I am today.  This takes you back to the beginning. A very personal, heartfelt reflection.

One Month

It’s fitting that it rained today. It rained the day we found out about Jude’s heart defect. It rained the day of his first and second heart surgery as well as the day he passed.   It has been one month of navigating this new life as a family of four. It is in the calm and quiet that my mind starts reflecting on the year we have had and that is when an overwhelming amount of emotions come because I can’t believe all that has happened; yet it did.

From January 10th, 2017 onward, life has felt like a tidal wave that just kept growing. For us, strength was not a choice. It was a lifestyle we had to lead for everyone in our family. We had never been more grateful for every moment knowing we were facing the uncertainty of time. Time was sacred and because of the daily help we had by family and friends, time was enjoyed as best we could riding out this wave.  Halloween, Thanksgiving, Christmas, and the New Year came and went which meant the second surgery date was here.

Jude hit every goal. He ate and gained weight like a champ. His pulse ox was going at a normal trend downward. He was doing so well, his surgery was even pushed back to a later date. We went into the Glenn surgery feeling “prepared”, feeling optimistic and feeling hopeful. Yet, there was always an uneasy feeling of underlying fear that things could change at any time.  Our love for Jude and the life we dreamt to provide him was the anchor that kept us grounded through it all.

The surgery was successful. He was breathing on his own. But, his heart function took a turn on day three and he really never recovered. The month+ that followed was a blur and then the tidal wave finally crashed. With my sons last breathe; I felt myself somewhat catch mine.

Just like that, it was done. No more long drives to LA, no more needing so much help to care for our family, no more meds or germ patrol, no more doctors visits or future surgeries, no more seeing our child endure.

In one month we have also been overwhelmed with the greatest amount of love and support from people of all different times in our lives. We have gained strength when we didn’t think there was any left. We have reflected. We have cried and cried some more.  Jaxon and Camden have and will continue to be our sunshine. They are keeping us going.

Lastly, in one month, we have peace. Peace that he is healed. Peace that we will see him again in heaven. It is taking great courage and faith daily to let go of what we cannot change and great perseverance to keep moving forward.  But we will continue; for our boys.

Our Sweetheart

I sit here and stare because like so many of you have commented, there truly are no words that will help this pain we are feeling.  We are overwhelmed by the outpour of love and support.

A fellow heart parent said, “No wonder it’s such a beautiful day today, Jude is showing us his new, beautiful heart from the heavens!” We looked up and that could not be more true.  Although it was the hardest thing we ever had to witness, Efren and I had time reminiscing on eight beautiful months where Jude wasn’t hooked up to any machines, and where we were able to stare and kiss and love on our beautiful boy before he left us.

My Aunt Denise said, Many of us have suffered the heartbreak of infertility, of miscarriage; but thankfully few have lost a baby they have held and snuggled and loved and laughed with.

A mother that has lost her sweet baby told us, The one thing I have found is if the pain brings you to your knees, you find strength and hope thats beyond your own. It’s those that stand up during hard times thinking they can do it on their own that suffer.

A girl from Humboldt that both Efren and I coached who has lost her twin sister as well has her mother said that it never really gets better, but you learn to handle the pain.  We are beginning a new chapter in life now; learning to navigate being a family of four. The outpour of love is lifting us up.

One Tough Dude

Written by my husband Efren: It is day 17 after his 2nd open-heart surgery.  Since he had such a successful inter-stage, the time in between his first and second surgery, his cardiologist and surgeon both expected him to have a 1-2 week hospital stay after his Glenn if all goes well. That was the focus and goal but, like many times during this heart life, expectations and reality are very different.  A day after the surgery the team took an echocardiogram (ultrasound of the heart) and were very happy with the surgery results.  But, two days later, they found a valve that began leaking, fast forward to today, and Jude is now in acute heart failure.

I’ve been by his side every day since surgery and there is no doubt he is one tough dude. He has been poked, prodded, and temporarily paralyzed numerous times since he is experiencing delirium.  X-rays and Echos are being done frequently, and dozens of specialists enter the room throughout the day to evaluate Jude in their niche of the Cardiothoracic Intentive Care Unit. Children’s Hospital of Los Angeles had an amazing reputation prior to us being here, and they live up to it daily. There is a lot of, “storm” within the halls, and their staff continuously do a great job keeping things calm.

Since he still has a breathing tube in, the only way of communicating is through his big brown eyes.  A couple of visits ago, Jude shed a tear after seeing his Mama. It was a pretty special moment.  We’ve all shed many tears.  He desperately wants to get out of his bed and be held which isn’t an option right now.  The worst part of my day is witnessing him speaking with his eyes, “Dada, help me. Get me out of here.” Those are by far the toughest moments but I continue to focus on picturing the numerous stroller walks to the park we will make in the upcoming months, and the joy he will have once again.

As the father and leader of our family, I can’t help but to still feel blessed. My biological father walked out on our family when I was 3 years young.  I have dreamed about being a father ever since I was old enough to comprehend his actions. I am here with Jude, by his side daily, and he knows it.

While I have been at the hospital, Kristina has been at home taking care of Camden and Jaxon. She has done and continues to do a remarkable job keeping their minds off the fact that Jude and Dada are not home. I’m confident Cam and Jax do a good job making Mama smile and laugh too (great job, boys!).

There are several obstacles he has to overcome before talk even begins about getting him home. It is a fine balance that the doctors are trying hard to find in trying to wean him off supports and medications while still giving him enough to stay and remain comfortable.

I continue to be optimistic and hopeful. Thessalonians 3:5 states, “Now may the Lord direct your hearts into the love of God and into the patience of Christ.”  We have a long road ahead of us, and the doctors don’t anticipate Jude getting out of the hospital anytime soon. He is on medicine to help the leaking valve, and they are trying their best to avoid another surgery.  So many people have reached out to us with the utmost sincerity; people from all different times in our life.  There have been so many people sending prayers, warm wishes and positive thoughts.  It continues to lift us up and fuels us to keep moving forward.

This post has been hard to write. I have been thinking about it, talking about needing to do it, yet not accomplishing it which is very unlike me. I even tried to pass it off to Efren which was declined instantly and I am glad he did.  This has been a year of really high highs and really low lows.

Best of 2017

It was  a year of having my faith tested. This photo was taken the day after one of our best friends got married. We found out about the heart defect two weeks prior. The distraction of catching up with old college friends was a relief, but as soon as we got back in the car to go home and our mind started drifting away from the night before, our reality hit hard. We decided to take Skyline Boulevard on our way back from Half Moon Bay and drove upon this. It was the first moment I felt God giving me a sign that it would be okay. I immediately told Efren to pull over and in the middle of the road; I captured this.

Camden was my sunshine. He made me genuinly laugh when I didn’t think I had it in me. His chubby little hand pulled me through the toughest of days. He needed me just as much as I needed him.

Danielle Walker, writer of Against All Grain posted about griefs dichotomy. She wrote, “It seems impossible to have so much joy and gratitude in the same space as so much pain, but they can co-exist” and in this picture, they’re both ever present.  This pregnancy was hard and I felt robbed of the joy I should have been feeling.  It was filled with the stress of moving quickly, selling our condo, doctors appointments, processing, crying……and more crying. I was induced and delivered both boys, at 38.3 weeks in front of no less than 25 people. In the recovery room, holding Jaxon, I felt so much joy that the delivery was quick, and there were no complications.  Watching Camden meet his brother was priceless.  But, this picture was missing Jude who was in the NICU and the inevitable surgery was looming in the back of our minds.

It has been a year of extreme thankfullness. I read on @heartkids, “I swear to you that they will change your life forever. These children with broken hearts will wreck you in the most beautiful way. You’ll never learn to surrender more when you hand a child into a surgeons arms. You’ll never be more terrified than when you love a child you could lose. You’ll never be more grateful for every moment when you face the uncertainy of time.” Those words are real. This isn’t just a picture of me holding my baby. This was freedom- my freedom to be a mama simply holding her baby for the first time after having open heart surgery because he survived. Too many families do not have that freedom and that is not lost to us.

This was the year, five years later to be exact that the words, “In sickness and in health” which we promised eachother on our wedding day, came into action. We had a real and honest eb and flow of emotions; being strong for the other when needed. Most of the time when marriage is rough, one person did something to effect the other but with this, we were both experiencing this in the same and different ways. I have such a new respect for Efren as a man, as a father and most importantly as my husband.

This is the year I became a mother to three little ones. I no longer had enough hands to hold all my babies. Through that, it was also a year of support; of literally feeling the strength to keep going through your acts of service as well as my own personal growth of being okay with accepting help in all forms.

Lastly, this is the year we became a family of five.…. Efren and I look at each other and still shake our heads in disbelief. We did not get to choose this life. It caught us off guard and unprepared which was hard; especially for our type A planner personalities. “To suffer, that is common to all. To suffer but still keep your composure, your faith, your smile, that is remarkable. Pain will change you more profoundly then success or good fortune. Suffering shapes your perception of life, your values, your priorities your goals and your dreams.”-Pastor David Crosby…. And for that, I’d choose this life and this year over and over again because these boys make it all worth it.

The new year will bring new challenges quickly.  Jude will have his second open heart surgery at the start of the new year.  We found so much strength through this community.  From the bottom of our heart, we thank you for the support, love and prayers.

We made it to what I have always called, “The goal month”.  The mantra that we just need to make it to November has been something that has been repeated SO many times to inform as well as remind that there IS an end to this inter-stage.

It has been hard having a feeling of getting through it and wanting it to be done, yet also wanting time to go slow and to remember it and to capture it and to enjoy it because they are only this little so long.

My Aunt sent me this article  written by Grace Emily Stark, and it hit me in the best of ways.  She wrote,  “I’ve found myself becoming overwhelmed and exhausted with the responsibilities of my daily life, with the nagging sense that I am failing at it all.”  This life is nutty, even with the BEST support in the world.   We have had the greatest, AND constant support from my mother, who has practically paused her life to help me get through mine, my father along with my Grandma Niklas, Aunt Mary and Aunt Kelly who come over to help each week without fail.

But, this life is constant and it is sleepless and we are still in inter-stage which is stressful. The mortality rate is still high and the common cold will land Jude in the hospital because his lungs can not handle any sort of respiratory distress. So, becoming overwhelmed and exhausted by daily life has been creeping up a lot more frequently as we got closer to the goal of November.

Today we met with Jude’s heart surgeon who performed his first and will perform his second open heart surgery.  The good news is that Jude is rapidly growing and putting on weight just recently reaching 15 pounds!  His pulse oxygen levels have steadily decreased but are not at a point where surgery is necessary right away. The Doctor stated, “The bigger Jude is the better, but, if he needed surgery tomorrow, he is big enough,” which is a huge blessing to have made it to this point where he is viable for surgery.

So now……….. we wait.  We keep on tracking and celebrating his progress in weight gain, and watch closely as his oxygen levels decrease which is the norm and WILL eventually happen.  When that time comes, he is ready for surgery.

In that article Stark wrote about the St. Augustine quote from his Confessions, “… for You have formed us for Yourself, and our hearts are restless till they find rest in You.” The article concluded in explaining that to rest at Christ’s feet or in God’s arms – to “choose the better part,” takes a trust so radical, so complete, and so pure that the One who needs no rest only desires that we rest completely in Him.

To not have a timeline, especially during this holiday season, is hard.  We feel like life is somewhat on pause, yet we are trying to live it to the fullest. Since Jude staying healthy through this cold and flu season is imperative, we are avoiding crowds and hitting up every park in Orange County carrying hand sanitizer as we go.  The fresh air and outdoors has always been our saving grace and we have enjoyed exploring our new home town. Thank you all for the messages, letters and prayers.  The support we have felt through this all has lifted us up so many times.

This is what we have been praying for. All five of us under the same roof!    If I am being brutally honest, I have to admit that when Efren called to tell me Jude was coming home, I had a moment of such relief and happiness followed quickly by a feeling of, “Oh shit, here we go.” Three kids under two is hard.  Twins are hard.  Add on a heart defect and we had the trifecta.  Sleep deprivation was in full effect already for both of us. You don’t realize how exhausting stress is until you have a little reprieve from it. The hospital life was exhausting for all of us; especially Efren who moved in to stay with Jude.  We were and are still trying to be the most present parents we can be to Camden as he transitions into life as a big brother with two little ones home.

Jude was now entering interstage. The “interstage” period between the first heart surgery and the Glenn operation (second heart surgery) is such a high-risk period. The mortality rate during this time period is estimated to be 10-15 percent. To say we were and are nervous is an understatement. This left us as a family pretty isolated for the time being to ensure Jude stays healthy.  Any sickness could be extremely detrimental and would land us back in the hospital.

Jude has a strict medication schedule. We have to check his pulse oxygenation levels three times a day and track his weight each morning.  Weight gain is beyond critical during this time so we fortify his breast milk with formula. I call it his protein shake getting in those extra calories. Doctors visits are weekly.  Thankfully, the interstage team at CHLA respects Jude’s cardiologist in Orange County so we only have to drive to Tustin instead of LA which is a HUGE relief.

 The days and weeks have past and Jude has been gaining weight and getting stronger daily. It really does take a village and I must say, ours is top notch. They’ve visited us, prayed for us, supported us; they’ve fed us, sent gas cards, diapers, wipes and wine🙌🏼 but most of all, they’ve simply loved us. Our hearts, and hands, are so full and I can honestly say that we could not have gotten to this point without their support.  There are not enough words in this already long post to thank my Mom, Dad, Grandma (GG), Aunt Mary and Aunt Kelly enough for coming weekly to  hold a baby . That is another post all on its own.

We now prepare for the next step which is his heart catheterization on Tuesday, September 19th.  During this procedure the doctor takes a catheter and runs it through the artery in Jude’s leg all the way up into his heart and through his arteries. A doctor that specializes in caths does this procedure during a live video type of x-ray, so he can see his heart function in real time. It’s pretty invasive as you can imagine. Nothing is simple with Jude so once again we are requesting all the prayers we can get because they ARE working! The heart catheterization will determine the date of  the Glenn, Jude’s next open heart surgery.

I honestly feel that Jude progressed so quickly because Efren was at the hospital and by his side 24/7.  Being his advocate, his cheerleader and sole bottle feeder was huge.  Consistency is key and Jude had that.  He made his goal of keeping down enough milk and gaining weight three days in a row! After 41 LONG days, FINALLY, discharge day was here!

There was such a mixture of emotions while leaving the hospital.  Relief mixed with anxiety that it is now all on us.  Extreme happiness yet extreme sadness as we walked past the rooms of children who may never get to have this day.  That was not lost on us and we continue to pray for those that we met while there.  There was also a little bit of anger that crept up as we knew we will be back here in a couple of months to do this all over again.  This was the end of the first leg of this heart life.

From the doctors, nurses, occupational therapists… the list goes on an on and we feel so grateful for the care Jude received at CHLA and are thankful he will be having all his surgeries there. It made the train rides and long drives somewhat bearable.   The staff was so attentive, caring and gave us a sense of calm in an environment that is nothing close to what that word means.  Now, we have a new title of, “nurse” in this heart parent life. Wish us luck as we embark on three under 2. Although it will be hard, we are so happy that this is our reality!

Jude was transferred to the Children’s Hospital of Los Angeles where he had the Shunt Procedure at six days old.  The surgeon inserted a shunt in order to pass blood into his lungs.  This was the toughest day of our lives.  Seeing our little guy post-op hit us like a train. I did research; I looked at tough pictures of other little ones who went through the same surgery; but NOTHING can prepare you for seeing your own child.  All you want to do is pick them up, rock them, hold them and comfort them; yet we couldn’t.

The Ronald McDonald House had a wait list so Efren, Jaxon and I we were driving to CHLA daily to be with him.  Thank God Jaxon is the chillest baby ever and doesn’t mind the commute.  We would leave as morning traffic died down and head home before rush hour began which lets face it; in LA, there is always some kind of traffic.  We would get home and be the most hands and attentive parents to Camden as we could until his nighttime routine began. Sleep deprived and emotionally drained, we somehow continued on and the days passed.

Camden was very confused with us coming and going so frequently.  He was not handling it well even though my parents were being AMAZING taking such great care of him and keeping him busy daily.  I was also pushing myself too hard and not giving myself time to recover from their delivery.  My body gave me a serious reality check and I knew I needed to slow down.  At that point, we knew we needed to make a change, so we decided to divide and conqur. I stayed home with Jaxon and Cam while Efren commuted daily by train to CHLA and eventually stayed there overnight as Jude was weaned off his medication and progressed. The pull out bed, cafeteria food and face time phone calls became the norm for Efren as we continued to take one day at a time.

 Discharge was based off of Jude continuously gaining weight and keeping down his food.  I was a pumping machine delivering that liquid gold. It was the only thing I could do for him and that is what kept me religiously doing it every three hours.  There was a setback when Jude’s stomach had an infection and had to be put on gut rest for a week.  Although remedial in the grand scheme of things, not eating for a week was frustrating as being apart was wearing on us both and no progress was being made during that time.  We were bummed to takes steps backward toward getting home, but he was still alive; he was still here with us and thats what kept us going.  Once Jude was able to eat again, he was a champ! He upped his intake and kept it down. We knew we were getting closer to getting him home.

Navigating

Nothing can prepare you for the news of your unborn child having a heart defect.  I went through days of wanting to know all the information I could; and days when I struggled.  Camden was the one that honestly kept me going when Efren was at work.  Being busy helps and thats what we were.  Packing and moving our life down to Southern California plus three very important weddings kept us on the go.

We moved into my parents house as we knew we would need constant support and help; especially when the boys arrived. I felt like a ticking time bomb; wanting to keep them cooking for as long as possible but also wanting the boys make their appearance so we could stop the over-thinking and deal with this next chapter of life.

  This pregnancy was hard.  The joy was consumed by my thoughts.  Thoughts of Jude, his life ……our life and what that would look like now.  I battled so many feelings of bitterness, jealously and depression. We had to continue to let our faith be bigger than our fear and embrace the uncertainty.  1 John 4:4; The Lord is greater than the giants you face. That was hard at times; actually all the time and as I write this it still is something I am holding onto tightly.  My induction date was set for May 17th.  We tried our best to enjoy the last few weeks as a family of three.

Multiple

Once moving down to Orange County, I quickly switched doctors.   It had been over a month since we received the news that Jude had Transposition of the Great Arteries. I felt like I was in auto-drive being so busy packing and taking care of Camden, the news that Jude had TGA somewhat sunk in.  I cried more in those weeks then I had in my lifetime.   I did my research and knew it would be a hard start, but after just ONE surgery, he would be okay and live a relatively normal life. Efren was still finishing up packing in San Jose so my mom came with me to the first appointment with the high risk pregnancy doctor in Irvine.  Dr. Leo began scanning and once he was done, he explained that since the initial scan in San Jose the heart has grown and he is able to get a clearer picture.  He is now seeing MULTIPLE defects. Numb was how I could describe the way I felt.  How could it be even worse?  How could there be more? How was I going to tell Efren this news over the phone? I kept myself relatively together but pretty much broke down right as I walked out of the hospital doors.  What a sight I was as none wants to see an extremely pregnant woman crying in a hospital hallway.  My Mom drove home and as she was backing out of the parking spot, she almost clipped a car behind her. I think we were both taking in the gravity of this new news.

Jude’s heart defect in simple terms is a hypo plastic right heart, with transposed great arteries and tricuspid atresia.  Basically what this means is that he will be born with half a working heart. Instead of two ventricles (bottom chambers of the heart), he has one. The tricuspid valve did not fully develop which left the right ventricle under-developed. That is what his aorta is connected to, and the pulmonary artery is connected to the left ventricle which is opposite of a normal hearts anatomy.

Born with these defects, there is no way for his heart to pump blood into his lungs to oxygenate his body in a natural manner.  To remedy that, Jude will undergo a series of three surgeries.  The first is the Shunt Procedure which he had at SIX days old.  The surgeon inserted a shunt in order to pass blood into his lungs.  This will allow Jude to breath on his own allowing time for him to grow and strengthen in preparation for his next open heart surgery; The Glenn.  This surgery is done around 3-6 months old and allows for more blood to flow into the lungs and upper body.  The third and hopefully final surgery is The Fontan.  As his body grows, the need for more oxygenated blood increases.  The Fontan surgery is done so that almost all the oxygenated blood coming back from the body goes to the lungs. This will take place around 3-5 years old.

Although we are fortunate that there are medical interventions, they are not a cure.  Jude will live with a single ventricle heart which will limit what he is physically capable of doing.  As his parents, we are going to give him the best life possible for as long as God allows him to be here with us on earth.

Weeks went by and the shock of having twins wore off.  Like most, I was so excited our anatomy scan appointment finally arrived so we would know the gender and I can start preparing for their arrival a little more. The technician started scanning and she was able to tell us with certainty that two more boys were on the way.  She called our doctor explaining that together they would need to go over the scans but was unable to get ahold of her. She continued scanning and tried calling again. When she couldn’t get ahold of the doctor, she left the room to go find her. I found it a little strange but appreciated her urgency since Camden was about done and Efren had taken him for a walk.   When the technician and doctor both arrived back into the room,  I felt by the look on their faces that something was wrong.  Another doctor arrived shortly thereafter; I oddly remember putting my hand on my racing chest.

I called Efren and he immediately rushed back in the room and that’s when our doctor explained that baby A has a heart defect. We immediately called Efren’s sister to come and get Camden, who at that time was beyond over being in the small doctors office. We scheduled an appointment with the cardiologist later that day since both of us did not want to wait any longer to get more information.  A kind nurse brought Cam a red train since all the toys we brought were old news by then. That train has become a treasure to us. It is a constant reminder of that day,  to keep chugging along through the waves of emotions we were, and are still constantly facing.

This news shocked us to our core. I will always remember the crazy storm San Jose had that day.  Right as we went out of the hospital doors, the tears started flowing like the rain that was pouring down on us as we walked in a daze to the car.  Drenched, we got in and just sat in silence.  Our life had just been flipped and there was nothing we could do about it.

With no second thought, we knew we would need help and support to get through this. We immediately went into action and put our condo on the market, packed up our belongings and made the move to Orange County.

I See TWO

When you think of getting pregnant, most parents will say they just want a healthy baby and an easy pregnancy. From the first time you see those two lines, to the first doctors appointment where you officially hear the words of confirmation come from the doctors mouth, I think every woman deep down is a little nervous; nervous that everything will be all right and your not dreaming that your pregnant.   When you hear the heart beat for the first time, you are able to breathe a little easier.   For me, that easy breathing lasted all of about five seconds before I saw the screen split. I watched Efren, who was holding Camden, immediately turn to our doctor, turn back to me and we both turned back to her to get some sort of explanation of what we were seeing. She exclaimed, “I see two!”

Efren became this ecstatic Dad while I was laying there in disbelief. When I heard the second heart beat, shock set in. My type A personality brain immediately began scrolling through how so much of our life would change. My brain was like a spinning rolodex that wouldn’t stop. I think I semi-blacked out as we scheduled our next appointment and walked out of the room while Efren was singing to the beat of the song, “Shots” changing the lyrics to Twins, twins, twins twins, twins telling anyone and everyone the news. I followed closely behind still in disbelief that this was our new reality. At that time I thought having twins was going to be our biggest hurdle. The mere thought of having three babies under TWO and how we were going to survive was enough to make me break down on the way home. Looking back, I wish I would have enjoyed that moment more; enjoyed knowing that at that point, they were developing and life was good. That there really was no true reason to worry.

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