At 21 weeks the doctors discovered that Baby Braun had some issues with her heart. We underwent several ultrasounds, blood tests and an amniotic fluid test just to see exactly what was up. It was discovered that Baby Braun was a she and she had some major heart complications, two holes, and Hypoplastic Left Heart Syndrome. They waited a few more weeks to let her grow so they could get a better view of her heart to repeat some Echo's on her, this would decide if surgery would be done before she was born or after. Unfortunately, her heart was too far advanced and they would have to wait until after she was born to be able to work on her heart. This did help make the decision that Emily would have to deliver down in Omaha so the best set of doctors were ready to aide once Baby Braun arrived. At 32 weeks Emily was flown down to Omaha due to preeclampsia and gestational diabetes. The team in Omaha were successfully able to hold baby off until 35 weeks and 3 days before she made her entrance. On Monday, October 19, 2020 at 2:34pm Rinken Ann Braun made her entrance weighing in at 6lbs 3 oz and 18.8 inches long. Emily got to hold her amazing baby for about 45 seconds before they took her and dad to the NICU of Methodist Womans Hospital to get her ready for transport. Rinken was then taken to Childrens Hospital of Omaha to be taken care of there. At three days old Emily was able to leave the hospital and join Rinken. After a 10 minute snuggle, Rinken was headed down for her first surgery. They performed her first heart Cath on her to see just what all was going on with her little heart in preparation for her first open heart surgery. At 8 days old, on October 27th, Rinken had her first open heart surgery. Dr. Ali was able to successfully place her Norwood Sano shunt on the left side of her heart. Surgery was just over 8 hours long and Emily was a nervous reck! Rinken came out like a champ, but her family was never prepared for what they saw, their tiny 8-day old baby laying on her bed, chest open and watching her heart beat. Her chest was open for 3 days before they took her back in and sewed her chest close. We were discharged on November 16th, 2020 and made our first road trip to Brookings. Rinken was sent home with a NG tube and was on 5 medications. Emily had to learn how to place her NG tube as well as how to feed her through it before they could leave.
Rinken would then have weekly doctor's appointments. One week in Brookings with Dr. Bien and the next week in Sioux Falls, with Dr. Sami. Every other time she would see Dr. Sami she would either have an Echo done or an EKG to see how she was doing. On December 8th, we got the go ahead to take her NG out! Best news ever!!! These appointments went on until her next Heart Cath on March 12th. This did show that she was ready for the next stage in her heart re-pare which would be the Glenn. Surgery was then set up for May 21st. This would be her second Open Heart surgery to place her Glenn. We arrived in Omaha on the 19th for pre-registration on the 20th. A long day of doctor's appointments, x-rays and echo's to get ready for surgery on the 20th. Her second open heart lasted just over 4 hours and this time she was closed when we got to see her! After a rough few day's, we were able to come back home on the 27th of May. We were home about 48 hours before Rinken just wasn't herself. We ended up taking her in to the ER in Brookings at about 3:30am on Saturday, May 29th and were Life Lighted down to Omaha by Childrens Hospital a few hours later. Doctors were stumped and Rinken was not well. It was a very scary few day's for us all. She finally turned a corner and we were able to head home once again on June 3rd. Rinken had a really good couple weeks and then we got hit again. On the early morning or July 4th, we ended up back in the ER and flown back down to Omaha. Once again, a very scary time for Emily and family. Rinken was turning blue and breathing very very hard. We were thankfully only down there a few days before we were able to come home this time.
Since the last flight down to Omaha, Rinken has had 2 ear infections, a sinus infection, Rhino Enterovirus and Croup. She was scheduled for her third Heart Cath procedure on Friday, July 30th, however we are waiting to see if this will happen now due to the visit in the ER on the early morning of July 26th.
Rinken will have to have several more surgeries, and there is a very good chance she will be placed on the Heart Transplant list at some point in her life, we just do not know when. She is a strong, brave, heart warrior with one hell of a road ahead
Facebook asks “what’s on your mind?”……today I could write a book about that’s on my mind…..being a medical mom to a child who has gone through more in her three and a half years of her life is thrilling, scary, exhausting, I could go on and on. All the feels are so real right now. This life is so raw. One minute you have a normal three year old running all over. The next you’re rushing down to Sioux Falls because your immunosuppressant heart child has a 103.5° temperature and you can’t get it to break.
Two admissions in less than a month. Two.
Last night her stats were scary low….to the point that she was as low as she was pre transplant. She is requiring oxygen. She refuses to use the oxygen. Talks of transfer to PICU….Heated High Flow…..Sedation to help her get better….oh and another type of influenza and Croup just to name a few things off the list of symptoms and issues.
How are we going to get through this? What about work? What about bills? What about food and groceries? What about making ends meet while you’re not getting an income because you’re in the hospital with your child exactly where you should be…..but you need to be at work……
My warrior is so sick. And I hate being helpless…..
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