Lu-cas [loo-ku s]: 1. real-life superhero 2. a boy full of incredible strength 3. utter cuteness 4. a reason to smile. 5. CHD butt-kicker. 6. red hair that makes girls swoon.
Here is Lucas’ story as bravely told by his mama, Ashley:
“On September 9, 2010 I took a positive home pregnancy test…..or 6. On September 14, the results were confirmed at the doctor’s office. This was definitely not a planned pregnancy, but it wasn’t not planned either…we were playing invincible 🙂
My pregnancy was going great and we were stoked to find out that we were having a little boy, who was quite eager to show us that, on December 27. The following week I got a call saying I needed to come have another ultrasound done because they couldn’t get a real good picture of his heart. At my regular OB appointment two weeks after the second ultrasound the doctor told me they still didn’t get a real good picture for the reader, but the tech said everything looked ok. I was given two options I could either just let it go and believe everything was ok or I could go get a Level II ultrasound (fetal ECHO) at Riley’s. I initially opted for option one but changed my mind shortly after because I am a paranoid person
We found out on February 21, 2011 that Lucas has a congenital heart defect known as Tricuspid Atresia. This is where the tricuspid valve which is located between the atria (top part of the heart) and the ventricle (bottom part of the heart) is either absent or under developed. Due to this, the right ventricle of his heart is also under developed. This causes the baby to be cyanotic (blueish) because the blood returning from his body has no direct access to the lungs. To get the blood to the lungs, it goes on an adventure through a VSD (hole in the ventricle) and an ASD (hole in the atrium).
To repair this, he will undergo three surgeries to re route the blood from the left side of the heart. The first being a BT Shunt, the second being a Bi-directional Glenn (hemi-fontan) and the third being the Fontan. They should be completed by time he is 2 1/2. (http://www.mottchildren.org/congenital/services/patient_con_tri.html0
Lucas was born at IU Hospital on May 10, 2011 weighing in at 7 pounds and measuring 20 1/2 inches.
I got to see him for just a few seconds before the took him out of the room to get ready for transport to Riley Children’s Hospital. I was unable to hold my baby for the first time until May 11 since he was full of wires and IV’s. I was petrified. However, he was in incredibly great health, all things considered and we were able to go home on Friday, May 13.
He had his first heart catheterization on August 16, 2011 and then determined it was time for surgery.
They had planned on it being a closed heart procedure in which they go underneath your arm to place the shunt. However, when they laid him on his side, his oxygen levels dropped so low that the surgeon decided to just go in through the sternum and get it done as quickly as possible. He spent just a few days in the PICU before we went to the Heart Center. They were going to keep him for a few more days than normal due to the fact that he wasn’t taking most of his bottles orally. We were finally going to go home a week and a half after surgery…but he had a fever the night before so they ran tests and found he had an infection in his blood, so we would have to stay ten more days for a round of IV antibiotics.
While in the hospital, he developed second degree heart block. Heart block is an abnormal heart rhythm that usually results in a slow heart rate. It is caused by a problem in the heart’s electrical system in which the electrical impulse is delayed or blocked completely as it travels from the heart’s upper chambers (the atria) to the heart’s lower chambers (the ventricles). In second degree heart block, some of the impulses are blocked while others get through so the heart rate is often slower than normal and irregular (http://www.mottchildren.org/congenital/services/heart-block.html). The doctors decided it was best to go ahead and insert a pacemaker to help as second degree heart block can lead to complete heart block. He had his pacemaker inserted on September 20 and we were finally able to go home on September 23.
Everything went decent after that for a few months. We got a new pediatrician- we weren’t really agreeing with the way his family doctor was going with things. He didn’t seem concerned about the lack of weight gain, etc. Since going to him, we have had a lot of things happen. The biggest being that Lucas had a J-tube placed on February 22. He is still really slow on the weight gain, but that is to be expected with a heart defect. After his surgery, he had an IV infiltration in his right foot and that got pretty gruesome to look at, but it is finally starting to heal up. He was only in the hospital for a few days after the tube placement before we got to go home. Once there, though, things didn’t go quite as planned. He was extremely fussy and vomity for a few days and his j tube site leaked a bunch…it was gushing. We ended up going back to Riley’s where they determined he was constipated causing the fussiness, vomiting, and leakage. After a few days there, we were sent home again. His site has healed nicely and barely leaks anything at all now- his surgeon just said it looked as good as it could. We did, however, end up back at Riley’s about 2 weeks after coming home the second time. This time his foot, where the iv was, was changing appearance a little too drastically for me. We had tried to call the plastic surgeon on call a few times that night, but we never got a call back so we ended up taking him in.
After 5 hours in the ER, they finally put us in a room for the plastic surgeon to come see us in the morning. After going off on them; they wouldn’t come see us in the ER and because they never told us what was good and what was bad….or when to get help- we were told everything looked good and to go home. They said they didn’t tell us what we cold expect because every wound is different, but it would have also been nice to know what I might have seen in the healing process….or maybe what was absolutely not good and needed checked out. We have been home since that date, thankfully.
Lucas went in for pre op on May 3 for his Hemifontan.
His surgery was the first case on May 4. They took him back around 7:30 A.M. Updates started coming around 9 and the first few hourly updates were just that they were still trying to get lines in. It took until about 11:30ish before they got everything in and could start surgery. The surgery went relatively fast after that and we were able to see him by 6:00-ish.
He was extubated and had just a little oxygen through his nose. Surgery went great, we were told- other than him not wanting to have lines placed easily :). Recovery was great as well.
He had his two drain tubes removed a few days later and we were out of the PICU on Monday. We spent the rest of the week in the Heart Center at Riley’s. He had a few issues with satting low at night and they placed oxygen on him while he was sleeping but we were not going to come home with it.
Lucas spent most of his 1st birthday in the hospital but we were discharged that afternoon! Before that happened, though, the Child Life department came and brought him a bunch of gifts! I was in awe by how much they brought! My heart is still so full of love from all of the love that’s shown there. I have never felt more at home at a home away from home place. The nurses are great, the doctors are amazing, and the atmosphere is splendid.
We didn’t get to stay home long, though, because Saturday morning (the 12th) Lucas had a coughing fit and vomited after holding his breath for a bit. This was the 4th time this had happened in a 24 hour period and I was concerned so I called the surgeon’s office and they had me bring him in. The did swabs on him to check for a few things but we were released on Mother’s Day morning because only one of the swabs would have any effect of what was being done if it came back positive and they were sure it wasn’t going to.
After a bout with pneumonia in June 2012, he was sent back to Riley’s because his fluid in his lungs wasn’t getting any better. That quickly resolved itself, but we were kept there an extra week to try to get him to start eating like a toddler, and to gain weight. I have refused to use his J Tube because he has a ton of anxiety over it, and well, he needs to learn to eat like a big boy. While in the hospital he gained VERY quickly, but since coming home, that has slowed down dramatically. Hopefully it picks back up soon and he outweighs a T-Rex in no time!
This is just the beginning of his long story with a CHD and I will continue to update and more things happen.
His current diagnosis is: Tricuspid Atresia, hypoplastic right heart syndrome, VSD, ASD, Heart Block with a pacemaker, and failure to thrive (very underweight). If you have questions or just want to talk, feel free to send me an e-mail. Ashley.B87@att.net.”
What Lucas grow!
Another incredible thing to know about Superhero Lucas is now 21 months old, he is officially J-Tube free! Since September 13, 2012 to be exact! His story will continue to be full of awe-inspiring stuff. We just know it!