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Premature Birth - Jeremee & Kacee 

9/2/2014

 
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On May 14, 2012, at 25 weeks gestation our two sweet babies were diagnosed with stage 4 TTTS.  They were given a 10% chance of living, and would probably not survive another 24-48 hours.  Our only option and chance of saving them was to opt for a placenta laser ablation surgery, and the only Dr. That our drs had a track record with was Dr. Martin Walker, in Seattle, WA.  So we flew from Denver to Seattle the evening of May 14th.  We met with Dr. Walker the morning of the 15th and after a very detailed ultrasound he determined that we were good candidates for this procedure that was to be performed inutero. The latest gestational age they could perform this procedure is 26 weeks.....we were at 25 wks 5 days.......

So on the afternoon of May 15th we were faced with one of the most intense moments of our lives. We underwent this most fragile ablation surgery to close off the shared blood vessels in the placenta that was my two babies lifeline.  After a devastating drop in one of the baby's heart rates we almost had to deliver right then, but thankfully his heart rate came back up and remained stable throughout the rest of the procedure.  We spent the rest of the day and that night in the hospital.  After the ultrasound the morning of the 16th showed some improvement in each baby we were released to go home.  We flew back to Denver on May 17th where we stayed the night before travelling home to Flagler, CO, which is two hours from Denver. 
I wasn't feeling too well, but going through what I had that was to be somewhat expected.  We decided it would be a good idea to go have the babies monitored for a while before we made the long trip home.  As soon as we showed up on the labor&delivery floor at Presbyterian/ St. Luke's Medical Center the nurses could tell something wasn't right.  I had developed extreme swelling, pain in my upper abdomen, and headaches that I could not get rid of. They put the monitors on to check the babies and did some blood work on me.  In the mean time the medication I was taking to prevent contractions was not really working anymore. And to make matters worse my blood work came back with bad news.....I had developed an intense onset of HELLP Syndrome.  My platelets were extremely low and my liver enzymes were elevated.  They called my Dr (Dr. David Forschner) to deliver the devastating news.....in order to save me they had to deliver our two babies right away.....  We were reassured that we had done all that we could to help our babies and that there was nothing we could have done to prevent this awful sickness from taking over my body.  We had 8 other kids at home that still needed their Mom too.  


At 7:30 p.m., on May 18th, at Presbyterian/St. Lukes Medical Center in Denver, Colorado, two very tiny identical baby boys had to be brought into this world 14 weeks too early.  Jeremee Eugene Santala weighed 2 lbs 1/2 oz, the donor twin and Kacee Ray Santala weighed 2lbs 12oz, the recipient twin.  This was the beginning of one of the most emotional and terrifying journeys of our lives. While I was discharged 5 days later, for the next four months this NICU is what our babies would call home, the best place for them at this time of their fragile little lives.
Both babies were fighters from the start.  Both babies faced the normal preemie challenges of cardiomyopathy, RDS, apnea, jaundice, R.O.P. of the eyes, chronic lung disease, high risk for intra ventricular hemmorhage and White Matter Disease,  and the list goes on. Kacee was a little bit stronger than Jeremee.....he still fought and struggled, but was able to overcome some of the challenges easier that they were both given.  While in the intensive care unit of the NICU Jeremee had become sicker and had to have surgery to close his PDA vessel by his heart and received several blood transfusions.  He had also developed two hernias that could not be repaired until he was healthier and stronger and his  ROP had reached stage 3.  
After 34 days in the intensive care unit both of our babies were finally transferred to the graduate NICU.  There Kacee would spend 50 more days growing and becoming ready to come home. Jeremee was faced with two more blood transfusions, surgery to repair two hernias, of which one was so bad that they had to go back in and repair it a different way because it did not hold. But finally, after 75 more days Jeremee was released to come home.


Both babies came home on oxygen.  And were on it 24/7 for several months; Jeremee much longer than Kacee.  Both boys' ROP in both boys' eyes completely reversed itself and that is required are yearly checkups now. Jeremee has a small stigmatism that is being watched carefully.  They have both developed mentally at normal levels. Jeremee is a just a few pounds smaller and a couple inches shorter that Kacee, but that does not stunt his spirit!  We are so completely blessed by where our journey has brought us to today. Our 119 days in the NICU brought us so close to several nurses and doctors. They have become a special part of our lives. What a challenge those four months were to our family, our other eight kids, and living two hours away from our two precious sons...... We have no doubt that our babies are complete miracles from God...they all are, we were just given the opportunity to witness these miracles firsthand.   God has Blessed our doctors and nurses with knowledge, love, and tenderness and for this we will always be greatful!  Today by God's mercy and grace, our boys are healthy, very active two-yr olds!!

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  • Home
  • About
    • History
    • Blog
    • Contact
  • GET INVOLVED
    • Start a Fundraiser
    • Supporter Toolkit
    • Partner Toolkit
    • Become a Sponsor
    • Become a Nonprofit Partner
    • Initiative Days
    • Random Acts of Kindness
    • Share Your Story
    • Remembrance Day
  • Nurture Award
  • Partners
  • Give
  • Resources
    • Disorder Resources
    • NICU Resources
    • Regional NICU Resources
    • For Health Professionals
  • Honoring all NICU babies