Shane and I were both ecstatic and 
nervous to welcome our son, Mark, to this world. Mark first showed us his adorable face on January 8, 2013. He is now almost 4 years old and definitely gives us a run for our money! He is a “typical” boy and loves anything with wheels. His favorite activities are playing pretend (he likes to pretend he is a daddy), riding in his “suped” up Jeep, digging for treasure in his sandbox, and building castles with his Legos. This kid keeps us constantly on our toes. From the outside looking in he is a “normal” kid, but Mark was diagnosed with MMIHS at 6 months old. Here is our MMIHS story:
At 18 weeks, we were so excited to find out the gender of our precious baby. After the ultrasound, and finding out he was a sweet boy, we received a phone call that his bladder was enlarged and we would need to closely monitor the situation. We quickly scheduled a meeting with a pediatric urologist who initially diagnosed Mark with PUV (Posterior Urethral Valves). After that I went in weekly for “stress tests” and continued meeting with my OBGYN and other specialists. The thing that stumped them was that Mark had an enlarged bladder but my amniotic fluid was normal. I was scheduled to be induced at 38 weeks but Mark had other plans and made an early appearance. He was immediately taken to the
NICU where they emptied over 7 ounces of fluid out of his bladder. The next morning he was transported by ambulance to a NICU about 90 miles away (this is where I was scheduled to be induced). They tested multiple times for PUV, but they were negative. They continued more tests but couldn’t figure out what was going on. So we learned to do his catheter, started him on pedialyte, slowly progressed to breastmilk and were discharged after 2 ½ weeks. It was the most amazing feeling to be able to take our precious baby home after that time in the NICU!
After being at home we met with Mark’s pediatrician and I asked her to refer us to a GI Specialist.After meeting with a GI Specialist and a Geneticist, we started doing bloodwork to test for different conditions. After many negative results we finally got the answer when Mark was 6 months, MMIHS. This was a blessing, because we finally had an answer; and a curse, because the information I found was both limited and devastating. But Mark was doing great! We did a manometry study t the Children’s Hospital of LA in July 2014. With those results we decided the best thing would be an Ileostomy. So, in September 2014, Mark had an ileostomy placed to help with motility. In November 2014, Mark had a central line placed due to malnutrition and was sent home on TPN.
Our new life with MMIHS was definitely complicated but we are at a point where we feel like we are thriving. Mark is on TPN 4 days per week for 10
hours. We meet with his GI specialist once a month to draw labs and check progress. We change his dressing at home every week (unless he plays extra hard or gets it wet while playing). Daily care is something we will always have in our lives, but it seems as we perfect the art of being parent nurses and Mark gets older, it has become much easier. Now the challenge is going to be integrating Mark into the care process. He tells us daily that he wants to be able to do these things “all by myself” and we are slowly allowing him to assit where we can.