Julia’s Story

I have been so excited to share this very special girl and session with all of you! Meet the beautiful Miss Julia. You will see what a strong and brave little girl she is as soon as you read her story written by her mom below.

Julia Rose was born August 11, 2014. The moment she arrived and was placed in my arms it was instant love. Her birth was filled with many emotions. So many unknowns were to come about that we were very nervous. Let me tell you a little about her pregnancy.

Julia is my third child. She has an older brother Elijah (5) and an older sister Lydia (3). We found out that we were expecting another girl at our 20 week ultrasound. Her ultrasound went well except they saw some concerning areas on her heart. From our OB we were sent to a maternal fetal medicine doctor. We had many ultrasounds and we also saw pediatric cardiology to investigate her heart condition further. She was very active in utero but they were finally able to see that Julia did indeed have several abnormalities in her heart. She had a VSD, ASD, as well as a PDA. They told us that these issues would need repair anytime between 2-4 months after birth. We were heartbroken. They also told us that these types of heart conditions can be a precursor to a genetic condition. They offered us a few options-an amniocentesis, which we declined, we didn’t want to risk any procedure that she may not tolerate. Our other option was a simple blood draw called the panorama blood screening. It’s a blood sample taken from the mother and they are able to separate blood from the placenta to test the baby for genetic abnormalities. Two weeks later we were contacted by the genetic counselor and told that our baby was “high risk” for Down syndrome. We were confused. How could this be? I am only in my thirties and we never expected this. It was quite a shock to find out that this baby I’m carrying was likely to be born with Down syndrome. Both my husband and I prayed so hard, along with many others for her heart to be healed so she wouldn’t need this surgery at such a young age. We researched and reached out to people with children of Down syndrome. Neither of us knew much about it but we wanted and needed to know everything! I met an amazing support through Down Syndrome Diagnosis Network and its directors Jen and Heather. Mary from Prenatal Partners for Life was also a great resource for us. They are all 3 amazing women/mothers. I’m so thankful for them and the support the organizations provide for families.

Returning back to her birth, I went into labor August 11, 2014 on my own, for the first time ever, and Julia was in a huge hurry to arrive. Just as we got settled in at the hospital she was born. She was big and beautiful! She weighed 8 lbs and 5 oz and had big chubby cheeks and beautiful big eyes. It was love at first sight! Luckily my parents were able to be there shortly after she arrived and they were able to hold her for a few minutes. She started having some breathing trouble (pulmonary hypertension) so she was airlifted to Fargo and stayed 2 weeks in the NICU until her lungs became stronger. I cannot thank my friends and family enough for all the support they gave us watching our other kids so Steven and I could be with our sweet baby girl. The NICU is a sad yet happy place and I will never forget the amazing nurses and doctors that cared for my baby girl while she was there.

Julia struggled to eat well and our goal was just to get to 12 pounds so she could have heart surgery. Her little heart was working so hard. She was on 3 different medications several times a day. She also was very sleepy because her heart was working so hard. We had to set alarm clocks to wake her to eat every three hours. We tried so hard but she weighed exactly 11 pounds on January 9, 2015 when she went in for Heart surgery. Her surgeons were absolutely amazing and we really had faith in them. I should have been a disaster that day, but I had such a sense of peace about everything and she had so many people praying for her that we just felt that God kept us calm through the surgery that was supposed to take 5 hours, but only took 3! Julia remained in the hospital for 2 weeks and was such a trooper. She stole the hearts of every doctor and nurse she saw with her chubby cheeks, big eyes and infectious smile! The repair was a success and in May 2015 she got clearance to see cardiology on a yearly basis!

Julia receives Physical, Occupational and Speech Therapy once a week and continues to make huge improvements. Each milestone celebrated is that much sweeter. She continues to amaze us. She is stubborn (like her mommy) but I think it has helped her even if she fights the hard work the therapists do with her.

We have an amazing support system from both family and friends. We are blessed with so many people who have helped us big and small! (you know who you are) Thank you will never be enough for these amazing people in our lives. I’m so thankful that Kristen Purrington of Purrington Photography was kind enough to capture Julia and her siblings for us.

As we approach her First Birthday it’s amazing to look back on all the amazing things she has accomplished already! I can’t wait to see what’s in store next!

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