Tag Archives: being 5

Presenting our 22nd warrior, Natalie!

Being pregnant with Natalie was actually pretty awesome. The nausea was still all day long, but compared to her big brother, was mild. She went easy on me while I was pregnant with her. Everything was uneventful and normal. During the course of my pregnancy, I decided to switch my ob/gyn around 20 weeks along. This probably ended up being the beginning of a big mistake. Seriously soon-to-be mamas: don’t switch if you don’t have to. Lesson #1. The only reason I switched was to deliver at a hospital that was supposed to be “top notch” (it ended up being just as good as the hospital where my son was born). As opposed to my old OB, I had no idea but my new ob/gyn was totally against using ultrasounds hardly at all since my firstborn was born healthy and full term. I also was using Medicaid and I can only guess that the doctor didn’t want to “overuse” it. I had to pretty much beg for an ultrasound since I hadn’t had one yet, so at 26 weeks I finally found out that Natalie was a “she”. During the scan, the tech noticed that Natalie was very wiggly and the shots of her heart were not clear at all. She told me to tell my doctor, so she can send me for another scan another day. Totally cool. When I followed up at my checkup with the ob/gyn I asked her “so I hear the scans weren’t clear enough at the ultrasound” and she stated that everything was perfectly fine.

Nowadays, I know to never even take a doctor’s word as the final word when I feel uncomfortable with the answer. But at the time, I just let it slide, even though I felt frustrated, but I just knew that everything was probably..well..fine with Natalie.
The pregnancy went to full term and I had to evict Natalie by scheduled induction on April 21st, 2007- the same day as her daddy’s birthday.
The labor was fast and furious and she was born 3 1/2 -4 hours after labor was induced. She was also born with a clean bill of health and nice and pink. Apgar scores both 9, we were so ecstatic. A healthy baby girl born April 21st, 2007 at 8 lbs even and 21 inches long. Even taller than her big brother. Ha!

Every thought about our unclear sonogram photos went totally out the window. The nurses and doctors all heard Natalie’s murmur pretty soon after the birth, but we were told not to really worry because it’s so common to be born with a murmur that closes up quickly. Right before our 24 hour discharge from the hospital, the nurse who checked Natalie out said the murmur was gone and we were given the discharge papers. Home here we come! We got home and right that evening, my mom in law noticed how purple Natalie’s feet were. I was so deliriously tired that I shrugged it off as nothing serious, that “well, she has really fair skin like her daddy”. We never noticed much of the “purple spells” again so our overly exhausted brains didn’t think much of it. We followed up with our regular pediatrician for the usual few day old checkup and sure enough, our doctor heard the heart murmur loud and clear. Our doctor couldn’t believe no one caught it before we left for home a few days ago. The murmur never went away. Getting a bit concerned, our doctor gives us a referral to go and see a heart specialist at Johns Hopkins Children’s Center.

May 8th, 2007….
we were in the pediatric cardiologist’s office. Natalie’s oxygen saturation was 90%, but her weight and color were normal. At the time, I didn’t know much about the pulse ox numbers and how it worked, but now I know why they rushed to get her into the room to have her heart scanned. They knew something wasn’t right- 90% is not normal.
While scanning her heart during the echocardiogram, the doctor walks into the cramped room about 20 minutes into the test and heavily stares at the screen for a moment. He then sits down next to the tech and says “hmm..Natalie you’re even trickier than I thought”. He went from kind of concerned to really concerned. I’m sure my heart rate went up, but I did what I could to keep Natalie comfortable. She laid there like a champ, drinking from her bottle. The echo had to be at least an hour.
A little bit after getting settled into the exam room, the cardiologist walks in, really stern face, sits down with me and tells me how sick Natalie is. He explains all of these medical terms..but my ears aren’t letting much of it in… neither were my eyes because the tears kept me from seeing his diagrams.. finally the tears fell so I could see the diagram he took some time to draw: something to show me exactly how Natalie’s heart looked. He explained how she wasn’t born with a right ventricle, that it wasn’t functioning at all. That she has a VSD and an ASD but those 2 defects typically came with the defect of Tricuspid Atresia and that her ASD (Atrial Septal Defect) was actually helping to keep her alive. It was so much to take in.
I was so scared to hear more, but I knew I had to hear him talk. Truth is, I wanted him to stop talking. He let me cry and even left the room for a little bit to let me cry it out. Poor James and my mom in law were sitting in the room, too. I was holding Natalie and giving her a bottle and just was in such denial that she was sick. I kept repeating that she didn’t look sick- even her fingers and feet looked nice and pink.
From the time that Natalie was diagnosed to the time that she had her 1st of a few surgeries, the doctors at Hopkins and our pediatrician all kept a really (really) close eye on Natalie. We went in for weigh-ins and pulse ox checks a few days a week at the pediatrician’s office and almost weekly at Hopkins Hospital. We spent almost everyday at a doctor’s office. My husband and I studied the anatomy of the heart and I tried my best to figure out exactly how a Tricuspid Atresia defect functioned. As a new “heart mom” I wanted to be the expert at everything- all the way from diagrams down to exactly what to expect when she’s an adult. I was terrified of having more horrible surprises. I guess that was part of my grieving process- grieving the loss of a perfectly healthy baby girl.
Even with Natalie’s cyanotic spells (now we knew why she turned so purple the day we brought her home and there was even a term for it!), Natalie managed to still gain enough weight to keep everyone happy. She was a little skinny for a little while and slept a lot, but she was getting closer and closer to the bi-directional Glenn operation, and getting more past the need for a BT Shunt.

The focus was keeping Natalie stable and if she could skip the typical first surgery, we were told her outcome was even better. Her oxygen numbers were always in the high 80s or low 90s and with each point she went down, her age went higher. A few months before her surgery we “beefed” Natalie up with concentrated formula and she went from slim to super chunky. They wanted a chunky baby and they got one! With heart babies, the extra weight is actually great for them, during the surgery and for recovery. What a relief to have a nice chunky, big-cheeked baby girl.

(last of a few photos without her chest scars)

She had her very first heart catheterization, to help prepare the Hopkins team, about a week before Natalie’s scheduled heart surgery. Right after they finished, the cath doctor pulls aside in the hallway by the cath lab and tells us “well..we can’t wait longer than a week for this surgery, she needs it no later, her heart is showing signs of declining. Please make sure the date does not change.” My husband’s jaw dropped. I remember how gray Natalie’s skin was those few weeks before surgery. It was a good 50% of the time where she looked really sick. Her pulse ox dropped into the mid 70s. It was time. If she wasn’t going to have surgery very soon, she was going to die.

On Monday, October 1st, 2007 Natalie had her very first open heart surgery: the Glenn Shunt. This surgery helps to prepare her blood flow to skip past the malformed right ventricle and focus on her upper extremities. The goal is to eventually have enough blood flow to the lungs without having to use that side, but use the left ventricle 100% of the time with the Fontan.

 

It was a textbook case to the Hopkins medical team and it was a true miracle to us. I remember the advanced students (they called them “fellows”) who visited the PICU and each patient 2 times a day to check their progress and document everything. They would always visit Natalie last because they used her as the example of a great outcome. They would always smile at me and there was never any shortage of compassion. Here, my 5 month old daughter lay there with tubes and wires coming from every direction, but she was kicking ass and they reminded me of that. I kept holding onto that. And with each day, more and more wires and tubes came out. Freedom!
By Friday, October 5th, 2007 Natalie left for home! Her surgery went perfect and her body responded perfectly to the surgery. She was sore, but the incision (scaring the crap out of me, I can’t lie) was the only most difficult part of the physical care. I was so scared to do something wrong. And hearing Natalie cry from the pain… no mom or dad wants to see their baby in real, uncomfortable pain like that. But within a week of being home, Natalie was showing tons of signs that she was handling it more easily and she was feeling more comfortable.
From the time we brought her home until 2009, we just enjoyed her. She was able to do physical therapy and Natalie finally started walking around 22 months. Her energy, everyone could tell, was pretty good! At one point during Natalie’s recovery, her cardiologist said “Natalie’s body was made for this”. It had seemed that Natalie’s body was created to cope with the lack of her other ventricle.
In April of 2009 Natalie turned 2, we moved to Colorado from Maryland. Hopkins gave us the all clear that she should be able to handle higher altitude, particularly in the lower areas, like Denver. We were told that she probably wouldn’t need her 2nd open heart surgery- The Fontan completion, until around the age of 4 or 5. We had more time to just enjoy Natalie.
The move went well, we quickly found a great new pediatrician to help us keep an eye on Natalie’s health. During the summertime we noticed that Natalie wanted to rest more and her purple spells were more furious and happening more frequently. She still played and was trying to be active, but you could tell there was a drop. She would want to sit and lay around more often than play. We were finally able to get squeezed in to visit our new cardiac doctor at The Children’s Hospital of Denver in mid-September for a sedated echocardiogram. That’s when they threw a huge curve ball at us- they decided that Natalie was ready for the completion of her heart surgery and they wanted to operate ASAP. We were stunned. We thought we had a few more years!
We had a heart catheterization scheduled for October 8th, 2009. This was a way to prepare the heart team at Children’s: to really get a closer look at her heart and past surgery.
We had another curve ball- the heart team found 3 collateral veins that had to be closed off right away. These veins grew at some point over the year or so to overcompensate for the insufficient blood flow. But instead of helping Natalie they decreased her blood flow, which is why she was getting so tired all of the time. After a night stay in the hospital, Natalie recovered well enough to go home and rest. About a week later, Natalie’s energy was THROUGH THE ROOF. She was like a totally different kid. She was jumping and running and being a crazy 2 year old. Her collateral veins were closed off with platinum so there’s always a running joke now how expensive Natalie’s insides are. The only thing missing now are diamonds, which if Natalie could have demanded diamonds she would have.

On the early morning hours of Tuesday, January 12th, 2010, we brought Natalie back to Children’s for her Fontan operation. We were so very lucky to enjoy her through Halloween, Thanksgiving, Hanukkah, New Years, but now it was time to get back down to business.
(Fontan Completion with fenestration)
Her body was ready for this operation even if us parents were not. Other than some extra “oozing” as the surgical team calls it, Natalie’s transfer from off of the heart/lung bypass machine was a success. The operation took a whole lot longer than her first surgery, but this was it. This surgery was to “finish off” what her heart and lungs needed.
We had some little scares during the days in the CICU but nothing that hindered her ability to recover. At one point her kidneys were a bit “freaked out” with the amount of fluid and blood pumping in her body right after surgery, but her body worked it out. There was also a scare with her blood pressure dipping way low at times, particularly for the 2nd night, but just like her kidneys, her body worked that out, too.

By Monday night on January 18th Natalie was strong enough we were all HOME. Those are 4 beautiful letters. She did need continuous oxygen for a while, but we were prepared.
Natalie recovered beautifully. It was, once again, a text book case. We were all so thrilled. Within about a week of coming home, it was so hard to get Natalie to take it easy. Her energy level was pretty great and it became tricky to keep her from hitting her incision. But her incision healed beautifully. There were even moments we were given the green light to let her have a break from the continuous O2. As you can imagine, that was like heaven to Natalie.
We used the oxygen therapy until about April and we didn’t look back (except for when she had a nasty case of RSV in 2011 when she needed it again for a like a week).
Since her surgery, Natalie has evolved into such a spunky, energetic, wild and crazy 5 year old. She’ll be turning six in 2 months! She asks about her scars once in a while and tells us that her tummy and chest scars are “cool”. She has just started to deal with comments from other children in her class and she’s learning how to deal with that. She’s also begun to ask “why me”? concerning her special heart. That’s a really tough question to answer.
To date, Natalie has about 9 visible scars from her surgeries- her “zipper” (she loves it when I call it that), chest tubes scars, wrist scars, and neck scars from various lines. But just like her scars, the memories that Natalie has about her surgery seem to slowly fade away. She attends full day kindergarten, loves horses, LOVES art, My Little Pony, and  has had a Make a Wish trip to Disney World. She’s the kid, out of the 2 we have, that we’ll have to keep a close eye on, but not just because of a heart condition, but because Natalie is a true thrill seeker. Watch out world! Here comes your present day Shirley Temple! : ) (that comment comes from a resident at a nursing home I used to work at that called Natalie “Shirley Temple”.)
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Presenting our 12th warrior, DJ! (post-surgery photos included!)

“My husband and I had tried for years to have a second child to complete our family.  With a few miscarriages and no other success we were about to give up when we found out I was pregnant.  I was very cautious at first, not getting myself too hopeful.  That first ultrasound when I saw that little heart fluttering away I cried, I was going to be a mommy again.  My fears of not being able to “complete the family” were gone.  Little did we know what that little fluttering heart had in store for us.   My due date was set for October 18th 2007.

My 20 week ultrasound looked normal. 10 little fingers, 10 little toes and 3 legs?  Yes, we were having another little boy!  We were extremely excited (grandma wanted a little girl to play dress up with but oh well).  I had 2 more ultrasounds to check my cervix because I had given birth to my oldest son a month early, and they were trying to prevent that from happening again.  Every time, she would check the baby make measurements and say that everything looked just fine.

October 17th, a day before my due date I went into labor.  I was expecting a very normal delivery but here is where the “fun” started.  The baby was breech so I had to have a C-section.  I hate needles so this did not make me happy.  At 9:15 Delvin James “DJ” was born, 8 pounds 10 ounces 21 inches long.   He looked so perfect that we still had no idea how sick he really was.

My heart sank when Terry, my husband, came into the recovery room and told me that DJ was in the NICU (Neonatal Intensive Care Unit).  Harrison, our oldest, had to spend a week in NICU and we were both really looking forward to having a normal, healthy baby.  That’s when he told me that his O2 levels were low and he had a swishing sound in his heart.  They were calling in a cardiologist to check him out.

4:10 pm … I remember the time so well.  A doctor came into my room to give us the news we had waited all day for.  Dr. Washington told us that the news wasn’t good, DJ had holes in his heart and his pulmonary valve had never opened.  He gave us some long name that I still can’t remember and made drawings of a good heart and DJ’s so that I could see exactly what he was talking about.  I remember thinking “please leave, I don’t want you to see what is about to come.”  I could feel my heart in my chest beating a million miles a minute as I tried to keep myself together.  He kept assuring us that it was fixable with surgery.

I don’t know if he was out of the room or not when the dam broke.  My heart breaking a little bit more with every tear that escaped.  How could this be happening?  Why my baby?  What had I done wrong this time?  In the back of my mind I still blamed myself for Harrison’s early birth.  I know I looked at Terry and told him I was sorry that he was never going to know what it was like to have a normal baby.

I hadn’t seen my baby boy except for the few minutes after his birth.  The nurses helped me out of bed and into a wheelchair so that I could go down to the NICU to see DJ before the transport team came to take him to The Children’s Hospital CICU (Cardiac Intensive Care Unit).  I couldn’t believe how perfect he still looked even knowing what was wrong.  I ran my fingers over his perfect little chest, baffled by the fact that they were going to have to mar this perfection to save him.  I asked my mom to ask one of the nurses if I could hold him.  I don’t think they really wanted me to because he was under an oxygen hood but, I think the look on my mother’s face made them change their minds about saying no.  He felt so small and so warm. It was in that moment that he was named.  Delvin was my grandfather and James was Terry’s, both lost to us within a year of each other, both fighters.  I was afraid of losing my little boy also.   I sat there with him till I physically couldn’t but, I just couldn’t leave him but had to.

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This is right before taking DJ to Children’s.

We were told that the transport team would be there at 8:00 to take him and that Terry had to follow him to fill out paperwork and get him checked in at Children’s.  They had started him on prostaglandins to keep his duct (“ductus arteriosus“) open as that was the only way he was getting oxygen to his body.  The down fall to the medication was apnea, so they intubated him for the trip.  They brought him down to my room before they left.  He looked so small on that stretcher in the incubator.  All the machines, the beeping, the looks on their faces as they took him … it was too much and I started crying.  Terry left with them and I made him promise to come back and tell me if he was alright.  At that moment a phone call wouldn’t do I had to see his face.

The next morning there was nothing I could do to keep my mind off of DJ.  I had told Terry to go to work so he could keep the time off he had for surgery day and for when DJ would come home.  I knew I was going to need help.  One of my OBs came in and sat on my bed, he apologized for not seeing this in any of the ultrasounds.  He explained that once he had heard what was going on and knew what to look for he saw it, barely.  I didn’t blame him, I told him it was fine and that everything was going to be okay.  I don’t know if I truly believed that or not but I think it was in that moment I put on my “brave face” and started making a few calls to friends and relatives.  Mom came over after seeing DJ and told me she had talked to a few of the doctors and they wanted to have a meeting the next morning.

Try as I might they would not let me leave so I asked mom to go in my place with Terry.  It was determined that DJ had 3 holes in his heart, 1 large and 1 small VSD and 1 small ASD, and the pulmonary valve had never opened.  They were calling him a Blue Tet, I found out that was short for Tetralogy of Fallot with Pulmonary Atresia (ToF/PA).  The surgeon, Dr. Francois Lacour-Gayet, was going out of town but would be back Sunday and wanted to do the surgery Monday morning.  I was relieved to hear this because I would be there with him and my family instead of being trapped in my hospital room.  Terry and my mom returned and told me “the plan” for the surgery.  They were just going to put a shunt in so that his heart could get a little bigger so they could do a full repair.  I got a call from one of the surgeons that would be helping, Dr. Goldberg, and he explained more to me what would be happening.  I then tried to talk to Dr. Lacour-Gayet on the phone but his accent made it impossible.  We all got a good laugh because of it; I would laugh later about it because I found out from the surgical nurse that he was as frustrated as I was.  One even said “that didn’t go very well.”

Later that day I would get a phone call from Dr. Goldberg, after another look at DJ’s heart with an echo they wanted to do the full repair.  They were fairly sure his heart was big enough since he was such a big boy, almost twice the size of an average cardiac baby.  I think the blood must have drained from my face because my mom was at my side in a heartbeat; she wanted to know what was going on.  So I asked if he would be willing to explain it to her so I didn’t mess it up, which he did.  So it was decided that they were going to do a full repair on his little heart and if all went well we wouldn’t have to do another surgery for at least a few years.   This was good news, finally.  Even better news, I could leave the hospital if I wanted.  With a lot of convincing from my mother, grandmother and Terry I stayed one more night.  I missed Harrison, I felt bad for leaving him so long, not that he noticed his Aunt Erin and Uncle Sean were keeping him busy.  I missed my house and my bed and real food but, I knew staying was best for my health and I needed to be strong for the next few days to come.

My Surprise that night, Terry brought Harrison out to see me.  They brought a DVD player and some movies with them.  We had dinner, watched Monsters Inc., and had popsicles. We tried to explain to him a little what was going on with his little brother.  He told us that everything was going to be fine; I kissed them good night and sent them on their way.  I only wish I could have been that positive.

Saturday afternoon I was released.  I had both of my OB-GYN’s come in and warned me about driving and walking too much and making myself too tired, both knowing very well that I was going to be stressing and not caring about my pain and comfort.  With one stop to pick up my prescription for pain killers, I made Terry take me to Children’s.  I wanted to see my baby boy that I hadn’t seen since they took him away the day he was born.  It was my first time to the new Children’s Hospital.  It was beautiful. Terry had told me that it really didn’t have that hospital feeling until you got into the rooms.  Man, it was true.  We had Harrison with us and had to get approval to have him come into the CICU ward.  The head nurse was going to fight with us till the geneticists wanted to talk to both my husband and I. I wasn’t about to leave my 6 year old out in the halls by himself.  It was the first time Harrison saw his little brother.  I remember he dragged a chair over to his warmer and just stared at him.  How scary that had to be for him.  Here’s this little person who you’ve been waiting for and he’s hooked up to all of these monitors.

The geneticists (who name I cannot remember) wanted to do a  FISH test.  He thought maybe his heart defects were due to a genetic anomaly, maybe Goldenhar Syndrome or DiGeorge Syndrome.  Neither of which either of us had ever heard of.  He said they didn’t like labeling kids but it was something to look into because of other things that went with some syndromes.  He then stated that he thought it would be Goldenhar’s just because Terry had some of the traits, an unevenness in the face.  I know I stared at Terry until it probably made him nervous trying to see it.  I did a little but nothing like he was describing.  We told him he could run his tests.

Another doctor came to us shortly after the geneticists left.  He introduced himself as Dr. Goldberg, a face to the name.  He had seen us and wanted to meet me and see if I had any questions yet.  He also wanted to know if we could come in the next day to go over “the plan” and sign some papers.  You know those silly surveys that go around that have the question “If you could have any super power what would it be?” Well right then in that moment I wanted the power to read his thoughts.  I wanted to know what he was thinking as he looked at my little family.  Was he thinking “poor people, this is going to be hard” or “Don’t worry, we’ll fix DJ right up for ya” I wanted to know.   We said our good nights to DJ and took Harrison home.

Going home, one would think it would be a joyous occasion.  I felt empty, lost, confused.  I was missing a vital part of my family.  It’s the hardest thing I’ve ever done, leaving my kids at the hospital.  I needed to eat and get some sleep so that I could feel normal again and be able to follow the conversations to come.  I think the only reason I slept that night was because of the pain killers.  I ran so many different scenarios for Mondays surgery in my head I was dizzy.  Sunday morning came and we dropped Harrison with my mom and made our way to the hospital to talk to Dr. Goldberg.  I was anxious to see how DJ had done that night.

We met Dr. Goldberg that morning in the CICU where DJ was.  He sat us down and began to explain “the plan” to us.  They were going to try to patch the two VSDs and the one ASD and try to use a third of a bovine valve to open up the pulmonary valve.  Only a third, because they hope the other parts that were still “human” would compensate and grow with him a little longer then the full bovine valve being inserted.  If it came to it they would just use the full valve.  Yet I think the worst and scariest part for me was the bypass machine.  What if his heart wouldn’t start back up? There were tons of waivers and consent forms to sign.  At one point I found myself thinking this was worse than trying to buy a car.

We went back to moms to spend some time with Harrison.  We weren’t sure what was going to happen in the next twenty-four hours and I wanted to be close to all of my support.  Harrison was going to spend the night there because we had to be at the hospital at 6:30 in the morning if we want to spend any time with DJ.

Again I found myself holding DJ until I couldn’t, but this time it was because they were taking him into surgery.  We were told the first night is the worst and that we probably wanted to stay at the hospital, so I went and got us a room for the night.  After we found our room and put some of our stuff down we went out into the waiting area where, over the next few hours we were joined by family and friends.  Ester, the OR nurse, would come out and update us when anything critical happened.   We knew when the central lines were in, when he went onto bypass, when they were piecing his heart together, and when his heart was beating again because he was off bypass.  I think when I heard that is when I started to feel calmer about everything.  DJ was in surgery for 6 hours but they were able to do the full repair.  We were told that they weren’t able to close his chest because of the pressure it put on the heart and that he was bloated from the bypass machine so they put a gortex patch over the opening and would close him up later.  Both holes in the lower chambers (VSD) had been repaired, the top hole (ASD) they had left open a bit, kind of like a pressure valve, and they had been able to open the valve and only use a third of the bovine patch, all exactly what they had wanted to do.

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Only a few hours post-surgery..the patch still present (chest open)..

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The Thursday after surgery. Chest all closed! Look at this warrior. He’s amazing!!

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All 3 chest tubes gone!

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Mommy getting to finally feed him for the first time!

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No more breathing tube! Just some good O2!

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Look at all of those medicines!

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Grandma holding DJ for the first time.

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Sponge bath and then BUSTING OUTTA THERE! Yay!

Mom was with me when I got to go back and see DJ for the first time after surgery, I wanted her to be able to see him and she had to leave to help with Harrison back at her house.  One of the nurses made sure he was covered up before we made it to his bed.  There were so many tubes and wires and machines, it made him look so small.  They had given him a paralytic so he didn’t pull at his tubes and IV lines.  The nurse asked if I wanted to see everything, I nodded and then held my breath.  I thought I was prepared but, I wasn’t.  She pulled the blanket back and I just sobbed.  Thank God my mom was with me, she got me calmed down and over that initial shock (defiantly one of those ‘I want my mommy’ moments) and we started asking questions.  I found out what all the tubes were, where all the wires were going, and to watch his tiny heart beat through the patch was amazing.  Here was the cause of all our problems beating away under a thin layer of plastic, and I could watch as I had once before on the ultrasound screen.  What a miracle and hardship one little heart could be.

Terry came in after mom left, I wasn’t sure if he wanted to see everything so I covered him back up.  When he came up to the bed he said he did want to see so I tried to explain everything to him but the nurse had to help.   I think we were all waiting for Terry to crack but he never did.  I was surprised.  The following are Terry’s thoughts in his own words.

As I was about to walk back to see DJ after his surgery I took a moment as I washed my hands, a required task for the CICU that we were getting all to use to, I prepared myself for seeing something that no parent should ever have to see.  When I first saw him, I was relieved it, the surgery, was over.  I was also surprised that he did not look as bad as I had imagined.  Don’t get me wrong, it was bad, but just not as bad as I thought it would be.  He laid there sleeping, and looked to be under very little distress.  His breast was split down the middle and spread about four inches, with a piece of thin gortex stitched into his flesh.  You could see his heart beating and lungs filling.  I remember thinking how crazy the first person must have been to look at a heart that small and say, “Hey, I could fix that!”, and how grateful I was for them trying.  It was like the calm after the storm.  Things were going to be ok, or at least that is what I was going to keep saying.  Now we just had to wait for the normal to start and get to know him.  Only five days old, and he has been thought so much.

Later everyone asked me why I never cracked.  I told them I had to keep thinking, they know what the problem is and they have a plain to fix it. It was the only thing that kept me claim.  If they would have said we don’t know what is wrong or we don’t know how to fix it, I would have lost it.  Kind of cold, maybe, but I had more than just me to worry about; I had a whole family to be there for.

That night we stayed in one of the parent rooms.  I got up a few times and went to go check on DJ.  I know they would have called us if anything bad was happening but I still had to go see him.  He was having arrhythmias (irregular heartbeats) all night long but, they had expected that.  Terry went to work the next day and I stayed to watch over my baby.  My aunt came to visit later that day and I went home with her to be with the other half of my family.

Every morning my mom would pick me up, help me get Harrison to school and take me out to the hospital since I had again, told Terry to go back to work.  Every day he seemed a little better.  We had visitors a few days but I mostly told people to wait till he was home.  I didn’t want people to see him like that.  It seemed like there was another tube gone or another drug missing every morning we came in to see him.  Thursday they were finally able to close his chest, Friday the chest tubes in his lungs came out,  Saturday the lead wires that went into his heart came out (in case they needed to shock him back into rhythm, which they never did), Sunday the chest tube in the pericardium came out.  The biggest hurdle left was to get the breathing tube out and get him breathing on his own again.  That came on Monday and I finally got to hold that little bugger again.  A whole week had gone by without him in my arms.  Next steps get him off a lot of medication and get him to eat.

He was getting better color every day, but he really didn’t want to eat.  We tried bottles and nursing.  He didn’t want either so they had to put a feeding tube up his nose, he didn’t like that.  Things were going great.  Then the day before Halloween we were told that we were going to be able to take him home, my own little treat.  We watched all the videos, had him tested in the car seat, I had the cutest little pumpkin outfit all picked out.  I was ecstatic.

Halloween morning we went to school with Harrison to see his parade and party.  I was walking on air.  Then my phone rang, sometime during the night DJ had gone tachycardic (a high heart rate that won’t come down), they couldn’t let him come home till they knew why this had happened or it went away.  I had to excuse myself to the nurse’s office at the school so I could just cry in peace.  I’m sure I scared a few people.  We made our way out to the hospital anyway.  They transferred DJ to the ninth floor CPCU (Cardiac Progressive Care Unit) where we just waited.  I felt extremely frustrated at this point.  They had taken him off the oxygen in the CICU and told me that as long as his O2 levels stayed above 87 they weren’t going to worry about it (because of the small ASD they had left).  The first thing they did when they got him in his room on the ninth floor was put him back on oxygen but no one could answer me if that was the cause of the high heart rate.  I thought I was going to pull my hair out trying to get answers.  I had been spoiled in CICU where we had a nurse around all the time and I could get my questions answered right away.

The doctors and nurses were still concerned that he wouldn’t eat.  He would just play with the bottle for a while and that was it, the rest would go into the feeding tube.  He had a certain goal he had to eat before he could come home.  He also wasn’t gaining weight so they fortified what they gave him.

November 3rd, what a wonderful day.  We finally got the okay to go home.  DJ was being discharged!  We would go home with Lasix, oxygen and the feeding tube so I got the lesson on how to change and place it.  I felt bad sticking that thing up his nose but if it meant we were going home, I would do it.   We packed up and got out of there as fast as we could.  I kept looking over my shoulder waiting for someone to come running after us saying they made a mistake and we had to come back.

When we walked into my mom house to pick up Harrison we were “attacked” by my little sister (14), it was the first time she had seen DJ.  She wanted to hold him so bad and she was so happy to finally meet him.  My brother (also 14) would only touch him with one finger.  It was funny to watch.  We gathered our boys and went home as a whole family for the first time.

We had a small fight with an infection in his incision but other than that there haven’t been any complications.   My Christmas present was a mostly normal baby, we were off all medications, he was sleeping though the night, and there was no more oxygen or feeding tube.  It was the best thing I could have asked for.

Today I sit and watch my now 5 year old boy run and play and I’m thankful for every day. His cardiology appointment is coming up at the end of the week, he will have his usual EKG and Echo done and then for the first time we will sit with the doctor and discuss a cardiac MRI and a Holter Monitor for 24-48 hours. I live to hear his laugh and love every smile I get. So we are still laughing through our journey and learning new things every day!”

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DJ with his big brother!

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Heart check-up time! Look at how good he’s doing!

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The love that these two brothers share..it’s hard to not see it!!

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pulse ox and smiles : )

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The Reeder Family 🙂

Wouldn’t you agree that this dude is a true superhero? And it’s always a show of bravery for any parent to go through such a rough time and be able to share their story. Jenifer, thank you for that! As we know in the CHD world, stories never end, they always get bigger. I love this family for numerous reasons. Both of our warriors are the same age! We also live in the glorious state of Colorado. Aaaaand we are very familiar with Children’s Hospital here in Colorado. But most of all, this family enjoys the time they have together and it shows! It’s impossible to not feel inspired by this family and what they’ve gone through.

Keep on rockin’ DJ!

update overdue.

Well alrighty then! Let’s get down to business because there’s so much to catch up on!

Queen Natalie has been doing really great. Her energy level has been ridiculous and her feistiness is almost surpassing her energy level. But she’s 5 and she acts like she’s 5. She runs like a 5 year old and socializes with her school friends like a 5 year old. There was an instance last week where she was hanging out with her little buddy from class at the playground. I let him sneak my phone to play Angry Birds. Usually when we see him that’s the 1st thing he asks for now. Go figure. Natalie sits down next to him while he plays the game. He is completely engrossed in the game and she’s sitting on the other side asking him questions about other boys in the class and twirling her hair. I have to be completely honest, her questions made me giggle a bit because they were so…..   “girly”. And here’s this 5 year old boy. Responding in a very… “boy” way. “Yeah I guess so. I guess we’re still friends I dunno.”

It was so funny.

Natalie has started up with a club at school and it’s choir. She gets her chance to sing really loud and dance. She LOVES it. Now that the weather has cooled down we haven’t had any migraine issues, overheating, nothing. It’s been so easy with her in school now. The only real struggle has been getting her to eat her lunch.

About a week ago she and her class went to the pumpkin patch. Sadly, I didn’t get to really snap any photos of her with her pumpkin. We’re thinking of visiting another pumpkin patch next weekend so that’ll be a good chance to get some. She is growing SO much. Physically, spiritually, everything. Even her voice is changing into an older kid’s size.

She’s been challenging when it comes to her homework. She doesn’t really get solid homework but rather practice pages and it’s SO. HARD. to get her to do them. But while in class, her work is fantastic. Her writing is pretty funny because she writes so well but you can tell when she wrote something and didn’t want to do it in class because the letters are HUMUNGOUS. She has sight words such as, “like”, “apple”, “at”, “the”, “on”, “mom”, “dad”, “there”, “like”, etc etc and she writes small sentences and can read simple stories on her own. And Natalie enjoys it which makes every ounce of difference.

Last weekend she had the chance to see her first circus show! The theme for Barnum and Bailey this year is “dragons” and she LOVED it! She kept asking when the dragon would come out. She ate a whole bag of super sugary cotton candy and was glued to the stage. She really did love the entire show. It’s pretty cool to be able to let her enjoy something that was my favorite as a kid, too.

Natalie is also completely 100% “night trained” now!! This was all her doing. About 2 weeks ago, I start helping her pick out her school clothes and find out that she purposely wore underwear to bed. Totally blew me away!! She has had really minor instances of accidents but catches it (that blows me away, too!!) but yup, she is officially a BIG kid. Sniff……

On another note, we did lose her SSI. I just mailed in our request to have an official meeting to appeal the decision. It was a bit upsetting because even though financially we’ve been doing a whole lot better than a year ago, we relied on that income. I’m confused with how the whole process works. Plus, Natalie lost her Medicaid as a result. Thankfully.. oh so very thankfully.. I double-insured her on her daddy’s plan for fear of this day coming, so she can still visit a doctor and get care. So, it’s a little sad that we lost the SSI but hopefully I can show the errors in their decision.

Welp. That’s about it for now. I think I’m going to try out a month soon (probably December) where I will post everyday. I would try November but the Queen and her servants are traveling to Baltimore for almost 2 weeks that month. Natalie will get to spend some quality time with family and friends on the east coast. We’re driving the 1700 mile adventure in our van so let’s see how that goes! Natalie and her brother are excited so we are, too!  But I think it’s because we promised candy and to stop in every state we travel through for a small prize. Yeah that’s probably it.  ; )

changes.

It’s been a full month of school for Natalie and she’s been doing fantastic. So fantastic that I have to document this. I am so excited to see what else she does. There have been some pretty incredible changes going on with Natalie.  She has gone through several years of physical therapy for gross motor issues but since she’s started school she has been running, even jumping! (she has never jumped off of say.. a step, since..well never) and picking up those knees like a champ! She keeps up with her big brother and classmates, too! She moves like a 5 year old now. The amount of changes in her physical abilities has skyrocketed in only a month of elementary school. There’s something about that new title of “kindergartner” that seems to be a big force for her. It was something that I never expected. I survived the first week with Natalie in school I threw all caution to the wind and sort of just let it go. I stopped worrying about her so much. I stopped comparing her to James. I stopped expecting something bad to happen. I stopped. Instead, I starting changing how my thought process was going with our new adventure…

She’s in good hands. 

Indeed this kid is. She’s in perfectly good capable hands. During her first month of school, she has endured a whole lot. And every incident, illness, and upset moment involved someone else to protect her. I won’t lie and say that a tiny part of me wanted to be there to take over the situation(s) instead. But if I keep doing that she’ll never grow up. She’ll never get to experience life away from mom’s shadow. A huge disservice to her if I immediately jump in every moment, bad or good.

For the first month of school Natalie has successfully (and supremely) handled a raging UTI (poor kid..oy), a punch to the chest by a fellow classmate, a classmate’s birthday party, a nasty cold (while taking her 1st major test of the year where she placed VERY high!!), and stomach virus. There are a few things more we can take from this..

Yes. Natalie has half of a heart and by technical standards, she is a little delicate under that skin. Her heart is without a right side, but the left side is so strong! It amazes me every single day how well she copes. I call this time of her post-Fontan life “the prime”. It really is the prime of her life in regards to how strong she really is. And I think that this prime time will last a long time. Is it okay to get a punch to the chest? Absolutely not. Thankfully, she took quite a blow but was completely fine. Phew. As a result, the parents were notified and it seems like this boy has calmed down. Kindergartners: I just don’t see how a teacher can handle 20 of ’em all at once.

2 days after the incident, I was walking Natalie to school on a nice cool morning, with James behind us. She says… “You know, my teacher told the class about my special heart. She told them to be careful with me and to never push or punch me. Then I showed them my scars.”

Luckily I was wearing sunglasses that morning to hide my tears behind them.

Totally out of the blue she tells me this. I told her how proud I was of her and I asked her how she felt about showing her scars and the teacher telling the whole class about her heart. “Pretty good” she says. Pretty good indeed Natalie. Since the incident with the chest punch, no one touches her unless it involves a hug, a tap on the head for “duck, duck, goose”, or hand holding.

Here are some more recent photos of the Queen with her brother and some very special friends at a Broncos game!! enjoy ; )

8 days ago..

Ahhh! So sorry for the lack of updates. Broken promises. Broken plans. Yikes. I intended to update this blog for every day in August. I had a little sliver of doubt at the beginning of the month. Once I got going, blogging everyday, I started to see our calendar fill up. Some days with plans oozing out of the huge box with that day and it’s little ‘ol number. The sliver of doubt began when I saw the beginning of school for Natalie, appointments, and the start of school. School- for everyone! Come one! Come all!

Our household currently houses 4 occupants and 4 students. Check us out! eehhh? Right??

But most importantly, our dear Natalie began the big K on Monday. This year, the school did a “soft start” where each child could pick either that Monday or Tuesday to begin class and then having Wednesday as the first day of a full class. If I heard right, I think there are about 21 students in her class. For our county’s standards that’s not too shabby.

But again MOST importantly, how did she do?

Fantastically! That’s how. She had a quick moment this morning where she asked, “Mommy, do I really have to go to school today? I’m so tired.” I think we all understand the exhaustion in that question. Her brother, who is in 1st grade, asked that question quite a few times during his entire kindergarten year. I’m kind of shocked that she waited to ask all the way on a Friday morning. Tuesday was usually her brother’s day to ask me that question.

The school has been pretty awesome about keeping the teachers in the loop about Natalie’s health plan. In fact, that’s another shocker for me, because I’m so new to this whole kid-in-school-all-day-with-heart-condition-thing. Brand new. She had a year of preschool but by the time I got home from dropping her off it was time to pick her up. And that was only 3-4 days a week. This time, it’s real. Like for real, for real. The school has been very good about taking care of Natalie so far. The only small issue we’ve had was some heat exhaustion the other day, but even I failed to see how hot it really was outside. Throw into the mix 3 recesses (2 of which I didn’t know about) and well, you get a little bit of heat exhaustion. She fell ill by the end of Wednesday, but once I pumped her full of even more water and a snack she was feeling normal again. The school didn’t do anything wrong. They kept supplying her with water and she kept downing it. When her teacher would ask, “Natalie are you okay?” several times, Natalie (just like her mom) would brush it off and just say “I’m fine”. She even looked fine, until we started our walk home.

Now we know to cut her recess time down a little bit on hot days. The 3rd recess is being dropped off soon so that won’t matter. It’s the lunch recess that’s triggering, I think, the biggest problem. For days like today, where the heat is just too much, Natalie will get to spend it inside either with the teacher or at the office, reading, coloring, and hamming it up with the faculty.

Wanna see some photos? Oh you know that’s why you’re here:

Natalie with her big brother! I really need to compare these 2 to last years’ photos. My god.

And there they go… off to new adventures.. off to experience the school life. A life of slightly crappy school lunches, optimistic dread, the sound of bells, the smell of pencils, glue sticks, and copied paper. Just like last year, the new students have the “deer caught in headlights” look. Natalie was smiling and then waved after I took this photo. Ham. Pure ham.

Natalie quotes.

“Can I have some pasta with no sauce? I love it plain cause it’s the best.”

“I’m not tired.” (YAWWWN)

“When I grow up I’m going to be a cat.”

“I’m going to shake my booty butt.”

“I love my brudder.”

“James if you give me mommy’s phone I’ll give you a hug.”

“It’s SO HOT outside.” (and places hand on forehead all dramatically)

“I love you, Mommy.” (said at random times all day and really fast)

fenestration.

Natalie visits the pediatric cardiologist every 6 months still. Which is totally fine for this nervous mama. Not that I wouldn’t enjoy yearly visits at least a little bit, though! But for now every 6 months is where it’s at. It beats the bi-weekly (sometimes weekly) cardiac visits when she was an infant. We are in love with her doctor. The staff is pretty awesome and her doctor is even more awesome if that is possible. They know Natalie and in her eyes, anyone that covers her in free princess stickers is a winner.

Currently Natalie’s heart function is exactly where it should be at. Her normal oxygen saturations are in the high 80s. 88% is a great number in the high elevations. It’s also great for still having a fenestration. As of today, Natalie is at her prime with the fenestration. We do get asked a lot if and when they’ll close it. I like when people ask about Natalie and where she’s at. It keeps my brain fresh. As my old boss used to tell me (when I would do something extra good at my job that day).. “it warms the cockles of my heart” when people ask me questions about my daughter. But yes, at some point Natalie will need that little “pop off point” to be closed as it will no longer serve a purpose. This little hole, almost like a manmade ASD, helps to keep Natalie’s heart pressures at a healthy level. As she continues to grow like a wild weed, we may notice her feeling more tired, have some cyanotic spells, and will show signs of something a little wrong. This is why her cardiac checkups are still every 6 months. It usually isn’t an overnight thing that happens. It’s gradual (thank goodness). But gradual could mean anything in the CHD world.. from days, weeks to a month or so. That’s when we’ll know that instead of the fenestration helping, it’ll actually be taking away oxygenated blood away from her and her big growing body will need it.