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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One response to “Presenting our 22nd warrior, Natalie!

  1. It is like I am reading my own story . Being a mother of a heart child who turned 7 last December 25th ( yeah everyone calls her a Christmas baby).
    planning for her fontan this year and praying God always to give me the strength to overcome this as well like her First operation.

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