Matthew

My husband Brian and I have been married for 6 years. We have 3 boys, Johnny will be 4 in July, Luke turned 2 in March and Matthew is 5 months old. Matthew was born with a congenital heart defect. I will never forget the day we found out our unborn son had an abnormal heart. At my routine 20 week ultrasound they saw something wrong with his heart and sent us to Iowa City for a follow up. Two days later, Brian, my mom and I were sitting in the ultrasound room hearing that our son; our unborn child had a heart defect. What? This can not be happening - I have 2 healthy boys at home - how can this be? We were heart broken. After an echo we were told that our son could have Hypoplastic Left Heart Syndrome or Critical Aortic Stenosis. They wouldn't know for sure until after he was born and have an echo done to confirm the diagnosis.

Matthew Robert was born at the University of Iowa Hospital on January 19, 2009 at 10:52 a.m. I saw my son for a few seconds before they took him away - I did not get to see him again until the late afternoon. Matthew had an echo done and after a discussion with the doctors our only option would be surgery. If not, Matthew would not survive. Matthew had his first of three surgeries, the DKS operation, when he was 4 days old. The days leading up to the surgery were horrible - uncontrollable emotions and lots of tears. We were finally able to hold him the day before the surgery. I did not want to let go of him. It was hard to think about what Matthew would have to go through in the next couple of weeks. Lots and lots of tears were shed, prayers for our son was all we could ask for from friends and family. What an awful feeling having to send your 4 day old baby into open heart surgery. That was such a hard day. They took Matthew away for surgery around 7:00 in the morning. Talk about having your heart ripped out of your chest. That is exactly what it felt like watching your son being rolled into surgery. Sitting and waiting for updates on how Matthew was doing and praying that everything went the way they were supposed to. Finally, good news. Matthew did great - we were able to see him around 5:30 that night. He came back from surgery with his chest still open and tubes everywhere. I was so happy to see him but it was very hard to see him in that condition. After 3 days they were able to close his chest. Everyday he did better, everyday we waited to hear that some tube or IV would be ready to come out getting us closer to going home. There is one day that sticks in my mind - Matthew still had the ventilator in and they were working on slowly weaning him off of the pain medicine. Matthew looked at me with his big brown eyes as if he was trying to say "mommy - help me", it looked like he was in so much pain and trying to cry but couldn't with the ventilator in. My heart ached for him. There was nothing I could do but get the nurse to give him some more pain medicine. I couldn't wait for the ventilator to come out and be able to hear Matthew cry, to hold him and start moving forward with feedings. Matthew was already 2 weeks old and never had a bottle. After a little more than a week in the PICU we were moved down to the second floor. Our goal was to get Matthew drinking from a bottle and trying to get the feeding tube out. After another 2 weeks it was determined that Matthew would need to go home on the feeding tube. Brian and I both had to learn how to insert the feeding tube into Matthew's nose which would end up in his stomach. It was one more obstacle for all of us to overcome. Matthew did not like the feeding tube but he was not strong enough to drink on his own. After 25 days of being in the hospital we were finally able to go home.

February 13, 2009 was the day we got to take Matthew home! What an exciting yet scary day for us. Matthew's brothers were so happy to see him home. Brian and I were scarred and nervous - were we doing everything right, feeding him, giving him his meds, so many things to do differently than with our other two boys. After a couple of days of being home we felt comfortable and with calls from Iowa City checking in on us gave us more reassurance that things were going the way they should. Feedings were a struggle but everyday Matthew kept doing better. In April we were able to take the feeding tube out. Yeah! - We were so happy to get that out. Slowly, Matthew started gaining weight and has been doing well since then. He still only drinks about 3 ounces every 3 hours. Same days are better than others and with the next surgery we are hoping that he will continue getting stronger and able to drink more.

Matthew had a heart catherization done on June 8th and it was decided that he is ready for his 2nd surgery. It will take place on June 30th. A day I am dreading. Having to watch Matthew go through everything again will be so hard. Matthew is so strong and I know he will do great. We have been so fortunate to have so many friends and family members thinking and praying for Matthew. Without all of their support having to go through this without them would be more difficult than it already is. Matthew will need one more surgery after this one. Hopefully it will be the last. Our hope for Matthew is that he leads a long, happy, healthy life. Matthew's heart will never be normal but with technology we hope that they someday find a cure for Congenital Heart Defects. Please keep Matthew and all the other little ones out there fighting in your prayers. This is a road that none of us want to travel on but with the help of family, friends and God, We will get through it, together.

The Wessels Family,
Brian, Amanda, Johnny, Luke and Matthew