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Feb 16, 2019 Latest post:
Aug 1, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Theodore’s journey, as we have been aware of it, began in October at our 20 week ultrasound. We received a call from the doctor indicating the need to have some follow up ultrasounds later after they noticed that his kidneys were a little large. There wasn’t any real concern at the time, as they simply wanted to be safe and get another look at him once he was a little bigger and organs were more fully developed. We did a 30 week ultrasound in Holland on December 21, and at a regular checkup on December 24 we were told that there were some real concerns about his kidneys and that we were being referred to specialists in Grand Rapids. We had been told that the issue could be a number of things, ranging from valve issues to a condition where cysts were growing in his kidneys.
At our initial appointment with the Maternal Fetal Medicine doctor we were told the issue was likely due to a blockage lower down the urinary tract, forcing fluid to back up from his bladder up into his kidneys. The damage was concerning, but they wanted us to hold out as long as possible before giving birth. They reassured us that it was a correctable issue and that Theodore would grow up to live a long, healthy life. We continued to go to the specialists on a regular basis for the month of January to asses any changes in his urinary tract and to monitor the amniotic fluid levels around him to make sure that his lungs would continue to develop.
Throughout the night going into Friday, February 1, Nicole began to have contractions. We happened to have an appointment at the MFM office that morning, and they found that the amniotic fluid levels had dropped to a dangerously low level for the first time. So as a result we were admitted to Butterworth Hospital to begin the labor and delivery process. About 12 hours after we were admitted, at 10:48 pm, Theodore Paul Baumgartner came into the world. He arrived 3 1/2 weeks early. We had a short window to hold him before he was taken down to the NICU at Helen DeVos Children’s Hospital.
The first few days of his life involved lots of tests and assessments of various levels pertaining to kidney health. On Monday, February 4 x-rays confirmed the suspected diagnosis that he was born with PUV—posterior urethral valves—meaning that a blockage existed that kept him from properly urinating and that this blockage had likely caused substantial damage to his kidneys. He was taken to surgery a couple of hours later to remove the blockage. The following few days, we were told, would give us a better picture for how well his urinary tract was functioning and the level at which his kidneys would be able to filter. We were hoping for a short stay.
On Wednesday, February 6 we were given news we were not expecting—that his kidneys were functioning worse than they had hoped, that they’d need to do another surgery to put a feeding tube and dialysis catheter in, and that he would likely have to be in the hospital for at least the next 5-6 months while they do dialysis and make sure he’s developing and growing properly. We were told he will likely need a kidney transplant as soon as he’s able to get one, at least 2 years down the road.
Our journey will be a long one with many ups and downs, and we know that we cannot do this without a strong community support us. We anticipate that there will be many unexpected twists and turns, likely dealing with the after effects of the blockage for the rest of his life, and we’re learning to take each day as it comes. We appreciate all of the prayers and support we have received so far. We know he is deeply loved and cared for.