As a Lancaster baby photographer, I absolutely love building friendships with my clients. I have had the privilege of getting to know so many strong, amazing women and hearing their stories. Juni’s mom has become a dear friend and I have been honored to get to know her and their sweet family even better since Juni’s newborn session last summer. Juni’s story is particularly dear to my heart, because it reminds me so much of what we went through with my oldest son Elliott. (You can read his story HERE).
(Special thanks to Tracy for being my “assistant” at the Lancaster Baby Shower this spring!!). It’s an honor to be able to share their Miracle Story with all of you!
HELDER (JUNI’S) MIRACLE STORY | Lancaster Baby Photographer
“When I (Tracy) became pregnant with our son nine short months after giving birth to our daughter, my husband and I were very excited and totally surprised. It took us three years of trying, failed infertility treatments and losing our first child at nine weeks before I got pregnant with our daughter. We felt like Evelyn (Evie) was our miracle baby, especially since we conceived her naturally. So, imagine our joy and disbelief in finding out I was pregnant once again!
“I had a great pregnancy with our son. There were no complications, no abnormal ultrasounds, nothing really unusual about this pregnancy at all. I gave birth to our little guy, Helder Jr. (Juni) two weeks before my due date. We were so excited to have our little boy, and Evie was elated to be a big sister!
“After we came home from the hospital, Junior’s bilirubin levels started to climb and he needed to wear a blue light belt. He was only supposed to need this for a few days, but he ended up needing it for a few weeks. I thought, ok, no big deal. At least he didn’t need to go back into the hospital for the treatments. We just kept this light on him 24/7 at home. Finally, our pediatrician and lactation consultant figured out that he had breastfeeding induced jaundice. I had never heard of this but it is actually a real thing, and that is why his levels remained so high for so long. Eventually his jaundice went away and we thought that now all will be well.
“About a week after Juni’s jaundice was better he started to do some strange things while nursing. I always struggled with nursing him, and he was just as tricky to bottle feed. After weeks of trying different things, we had a barium test done to check for reflux. He never spit up, so we weren’t sure if that’s what his problem was. But sure enough, the barium test showed he had moderately severe reflux which he would swallow over and over again. So, we started him on Nexium to help lessen the burning (poor little guy).
“I was very hopeful that now he would be easier to feed, but he actually just seemed to get worse and worse. He would quickly and frequently pull away while nursing or just fall asleep. I had a difficult time getting him to eat enough. I felt like all I did was nurse him, day and night. We were both exhausted, and poor Evie was not getting the attention she deserved either.
“I discussed these issues with our pediatrician and lactation consultant at Junior’s two month well check appointment. They gave me some pointers and new techniques to try. It was at that same well check appointment where our lives would take a sharp left turn. Our pediatrician was listening to Juni’s heart for what seemed like a good 5 minutes, which really is quite a long time. She told us she thought she heard a slight murmur but she wasn’t totally sure. She recommended we take Juni to a pediatric cardiologist. She told us she really believed if it was a murmur that it wasn’t anything to be concerned about. So, we took Juni to the pediatric cardiologist feeling like we were going to go home with an “all is well” report.
“After an EKG and an Echocardiogram, the cardiologist came into our waiting room to tell us that Junior had something called a ventricular septal defect (VSD) in his heart. Basically it is a gap in the tissue between the hearts lower chambers (the ventricles). A VSD is one of the congenital heart diseases often known as “a hole in the heart.” Because Junior’s VSD was large, his heart was having to pump much harder than normal to deliver enough oxygen to his body. This is why both he and I were having to work so hard to get him to eat and gain weight. The cardiologist said every time he tries to eat it is the equivalent of us running a marathon. That is how tough it was on him every two to three hours every day. Our poor little man!
“The cardiologist explained that we would wait for Junior to grow and gain weight as long as he could handle it. There was a slight chance that tissue may start to grow on its own and begin to close the gap in his heart. If that did not happen then the only other option for him would be open heart surgery. My husband, Helder and I were in disbelief. We were not at all expecting to hear anything like this, and it took a little while for it to really sink in that this was actually happening.
“For ten long weeks we prayed, waited and watched as our little baby boy struggled. But, he did grow and gain some weight over those weeks, which was the ultimate goal to help him prepare for surgery. In the middle of those very long 10 weeks, Juni ended up needing to be admitted to the hospital for a week because he got a common cold. His body was too weak to fight it, and he ended up not eating at all because he had no energy. He was diagnosed as failure to thrive. While he was in the hospital he needed an NG (feeding) tube placed so we could feed him and give him all of his heart medications. We took him home with the feeding tube placed and with my husband and I trained on how to insert the tube when it came out. This was awful! We ended up placing the feeding tube down his nose and into his stomach probably at least 10-15 times over the course of the next few weeks because Juni quickly figured out how to pull the tube out whenever he had an opportunity.
“This was the most difficult, overwhelming, scary and exhausting time of my life. I am fortunate enough to be able to stay at home with the kids. But, I felt so helpless and awful for Junior. And it was also extremely difficult for little Evie. We had to be away from her for the time we were at the hospital with Juni. She was in wonderful hands with my parents, but she was too little to really understand why we couldn’t bring her along with us.
“Finally, the day came when Junior’s cardiologist told us it was time to schedule the surgery. We were all so ready for him to finally feel better. There is nothing worse in this world then watching your child suffer and not being able to help him. December 4, 2017 was the day of his open-heart surgery. Thanks to God, everything went very well. Juni recovered so quickly that he only ended up needing to stay in the hospital for five days after his surgery! Typically, babies that have this open-heart surgery VSD repair need to stay twice as long. Words cannot express how thrilled we were to bring Juni home with his heart fixed and also without a feeding tube!
“He has recovered from open heart surgery extremely well. His heart is perfect! His surgeon was able to completely cover the hole and fix his VSD without any issues. There is no murmur, he is not on any medications, his reflux is gone, he eats great, is super happy and healthy and really is just a completely different baby.
But that was not the end of our story…
“While Juni was in the hospital for his surgery, the genetics team came to examine him. They do this for all the cardiac kids and babies to help them learn why these defects happen. After closely examining Juni, the senior genetics doctor asked my husband and me some questions and asked if they could take blood from Junior. We agreed and they left without any further explanation.
“Two days later, one of the genetics counselors came back to inform us why they were testing Junior’s blood. She said the senior genetics doctor believes Juni has something called Kabuki Syndrome. She pointed out some physical features he has which match those often found in people who have Kabuki Syndrome.
“We found out a month later when the results came back that he does indeed have Kabuki Syndrome. It is a multi-system syndrome which affects every person a little differently. This syndrome is the reason why he had the VSD. Otherwise, Juni is doing very well, and he has not had any of the typical problems children with KS normally have. He is developmentally appropriate and truly is just thriving!
“He is now nine months old, weighs 22 pounds and is 30 1/2 inches long! I am in awe of him and all that he has been through in his short life. We are so thankful that God chose us to be Juni’s and Evie’s parents. We are so grateful to have our happy, healthy children. Juni’s story is amazing. He is an inspiration and he is truly a miracle baby!
If you are looking for a Lancaster baby photographer, I would love to tell you more about LVR Portraits! Please contact me HERE and I will be in touch soon! If you would like to see sample galleries of my newborn sessions, click HERE.
LVR Portraits is a boutique newborn photography studio in Lancaster County, serving surrounding areas of Berks, York & Chester Counties.
If you have your OWN Miracle Baby, we’d love for you to share your story! Come join our Facebook group, Miracle Babies… Miracle Stories, where you can connect with other moms who may have experienced or are currently experiencing a similar situation as you!