Hey Everyone!! This is ALL about Tarkenton and his journey!
At 11wks gestation we found out our unborn son had an enlarged bladder. Long story short we ended back in our home state of Minnesota. At 15wks we were told it was called LUTO ( Lower Urinary Tract Obstruction. Which means he was NOT having urine output causing his bladder to enlarge and urine to back up to his kidneys.
We met with a World Renowned Fetal specialist who has done some amazing work. We went through 2 bladder taps which consisted of taking a needle to baby's bladder (in womb) and removing the urine. At 16wks we had our first shunt placement of 2 shunts. That surgery was similar to the bladder taps except they left a plastic tube from his bladder to the outside of his tummy so urine could drain for him to have amniotic fluid around him. Our follow up we found out 1 shunt was partially working and the other was completely in his bladder, so under the needle again. Mind you all 4 pokes I was awake for and barely medicated.
We found out I had ruptured after the second shunt placement. From that moment on we were told there wasn't anything they could do if I went into labor. But at 23wks they could offer me the first round of steriods to help develop and mature his lungs a little faster.
Before then we were told our chances of bringing our miracle baby into the world was very slim and that more than likely we would have a miscarriage. 23wks came and I was admitted to the hospital for my long stay until baby came. After the first week doctors were comfortable to send me home except COVID-19 hit and they were hesitant to send me home being ruptured and placed on bedrest. So I stayed, the hospital went on lock down and no visitors in or out.
Doctors and all sorts of team members came in or called to speak about our situation and that baby had little to no chance of life before 28wks. Due to the fact LUTO causes a list of issues such as kidney issues, lung problems, and even development all due to lack of fluid around the baby. But we set a date of May 22nd (34wks) to deliver since they felt that was best for delivery and life saving options.
28wks came and gone. 30wks came and gone. I celebrated every passing day that I remained pregnant and every week passed. Each week ment more development and more chances I'd get to be a mom (finally). But always having that knowledge of his chances at life was not very high and being told the chances of him being born not breathing was big. Reminding myself that every week that passed ment he was a little bigger and then he could have more life saving options.
33wks came and another round of steriods. Doctors decided that we should push to 36wks since I was doing so well. 35wks came and I woke up swollen and my blood pressure through the roof. They sent me right over to Labor and Delivery because that ment we had to deliver the baby.
So we started to induce labor and I started off progressing fast in 2hrs. But 10hrs in and baby wasn't doing well with contractions. So I made the decision to do a c-section.
Baby Tarkenton (TJ) was born on May 30th (35wks and 1 day) at 9:50am. When he was born the first 2 sentences from the doctors " Happy Birthday little Guy." And "He's breathing, just not well". Instant tears from both the husband and myself our son was actually taking some air into his lungs.
He was born with some of his intestines and left testicle on the outside of his body from where one of the shunts was and had apparently moved. So he went into surgery and transported to the level 3 NICU up the street. I will spare the details up until the next day other than I was being transported to the same hospital to be with him.
He was on a breathing machine called an oscillator that is so strong it shook him. We were told his chances at life were very small. But that they would try whatever they could that we wanted. Day in and day out we went to his room and sat there watching our premature newborn being shook and wondering if he'd ever leave the hospital. My husband and I would sit around his bed and hold his hand and just cry not knowing what life would be like for us since he had so much supporting him. I mean his lungs were underdeveloped, he had 1 small kidney and 1 cystic kidney, his lab work was coming back with super high numbers.
Meeting after meeting being told the same thing created more of a reality of we were not going to bring our son home.
The doctors spoke to us about his kidney levels being so high that we were looking at doing a dangerous dialysis because the less dangerous dialysis he didn't qualify for due to his surgery. Until a few days later his lab work was coming back with lower numbers.
June 9th the doctors decided to try and switch from the strong ventilator to a conventional one to see how he'd do but excepting little to nothing of a chance. We came in the room to machines going off and his doctor telling us he's breathing so well that the machine is actually trying to fight him to breath for him.
June 10th the doctors decided to try and take the breathing tube out completely and see how he did on just a nasal cannula on room air. Which turned out he needed very little of but remained on him.
June 25th the NICU felt he was doing so well they kicked him out and onto the Peds floor. With a wiff of oxygen.
July 8th We finally went home!!
August 17th completely off oxygen!
So What Has Tarkenton been up to since coming home from the NICU?
Stage 5 Chronic Kidney Disease which means he needed a Kidney! On November 16th 2021 He was given the gift of life by a living donor.
Underdeveloped lungs- due to prematurity and lack of fluid. But has not had issues being home. Doctors have deemed him 100% healthy breathing just room air. So no more oxygen!!
A underdeveloped right ear- He can hear slightly out of the right ear. We will be able to go in and finish opening his ear canal so he can 100% hear at the age of 5/6. We just call it his lucky fin.
Club feet- Which was corrected with 3 casts and braces.
Urinary blockage- The doctors want to wait until he's a little bigger to see if they can correct the blockage. So he has a vesicostomy to help with urine output. Vesicostomy is where they bring the bladder to the skin (under the belly button) and has a constant leak of urine.
Feedings- He has a G-tube where he gets all of his daily nutrition and medication. Due to His food aversion we work with him daily on oral feeds and fluids by mouth.
In the summer of 2022 Tarkenton was diagnosed with PTLD which means its a form of a transplant cancer. Due to the cancer we did have 1 of His tonsils removed. He was put on weekly infusions and on October 10th 2022 He was deemed clear.
In February of 2023 Tarkenton was diagnosed with some GI viruses called AstroVirus and Sapovirus. He has 3 in patient visits. Lots of medication, an extreme amount of weight loss. Currently waiting to see if it comes back. But has thriving since.
All in All Tarkenton is continuing to show us he is a fighter. His transplant went unbelievably great. We do have fears of rejection and damage every time he gets sick.
Stay posted for updates and Thank you for the patience to read this but also the support and prayers.
So where does His name come from? Tarkenton comes from the one and only Fran Tarkenton who was the quarterback for the MN vikings (1961-1966, 1972-1978). Jeffery from a Best friend of Tad's who sadly passed away in 2016.
TJ had surgery last week to place tubes in His ears and get more information about His bladder and the function. We left with more questions than anwsers but TJ has been recovering and the plan is to set a MRI/CT for more information about his hearing and bone structure on the right side. We also will be setting a follow up with urology to go over results.
We have labs next week to hopefully stop some medications. So fingers crossed. I've been failing to update His page more frequently. But we really haven't had any medical. We are focusing alot on Speech and Him getting to enjoy school.
The BIGGEST news is TJ is doing so well with his weight and height that his nutritionist wants to cut down more of his volume intake to get him to feel hungrier.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Tarkenton Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Tarkenton's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
Patients and caregivers love hearing from you; add a comment to show your support.Help Tarkenton Stay Connected to Family and Friends