Hyrum's List

By the time Hyrum was a week old, one of the Resident Doctors sat down with me and listed all of the problems that they found with Hyrum. It was a daunting list that we were not expecting. We went from 20 weeks pregnant knowing that he had issues with his intestines, to 32 weeks pregnant knowing that he would need surgery for lack of an anal hole, to 1-week post birth we got this...

Issues:

• Hole in Heart between ventricle chambers - Doctor last night said it's making less of a sound and is probably healing itself. VSD is the technical name we learned. By age 2 it was a crumb size, he will be seeing his Cardiologist this coming year (2012) to make sure all is ok. We were told to look for signs of exhaustion, or inability to get up and do what he wants as he grows. What does it mean when he is completely opposite! We love watching him with all his energy as that is one sign that all is well with his Heart!
  

• Ribs: has an extra set of ribs fusing with collarbone pushing it up - but don't know what they will do if anything about this, they need to check the structure more. This has not ever caused issues except when he had the bout of RSV, the extra weight made it difficult for him to breath. It makes him look a bit meatier in the chest, but nothing serious!
  

• Neck: some of the vertebrae in his neck are deformed and may cause spinal problems - Neurologist team needs to evaluate and determine if surgery and neck support need to be put in. We were told he would never hold his head up, and possibly need something to support his neck for the rest of his life. Surprising enough this was difficult to swallow, but we accepted it (what else does a parent do right?). We were very careful with the older kids holding Hyrum as we didn't want his neck broken. While at church when he was about 6 months old, I was holding him in a Lazy L position on my lap. It was enough for him to see around him without sitting completely up. When all of a sudden, he lifted his back and neck off of my hand sitting in a complete upright sitting position on my lap....holding his own head up! I was so shocked that I nudged John (who was sitting next to me), we stared in absolute amazement at the miracle we were both witnesses to. If you feel his neck, his muscles are HUGE. When we first showed his Doctor, we were told to not let him play football, but otherwise he should be a completely normal child.
  

• Intestines: Surgery went well, he has 2 stoma's (ends of large intestine sticking out of the stomach) - The next step for him on this is to let things heal for a couple of months, then he goes in for testing to see what is going on with the lower end of intestine and where it has tried to attach. Hopefully, it is attached to the prostate or lower rather than bladder or higher as higher is a worse long-term prognosis due to nerves and control. At around 3 months he would then have his 2nd surgery, then at 6 months another surgery to start making the anus, then who knows as it is all based upon what they find, how he responds etc. Of course, this did not happen. His intestine was attached to his urethra and of course, with all the problems we did not have everything taken care of by the time he was 9 months. I would say that this was the easiest thing to deal with, but caused and still causes most of our stress and concern!
  

• Left Ear: Needs hearing test to see if he can hear, and nodule took off - otherwise looks good. We learned that he can hear almost as well as most kids can with two ears, with his one ear. The Nodule (or Dog Tag is what we called it) was taken off when he was about 10-11 months old when his tonsils and adenoids were removed along with a tattoo placed on his "pouch" on his urethra where his intestine was attached but didn't heal correctly. We combined a few surgeries as he doesn't do so well with surgeries...or more the medication afterward.
  

• Right Ear: Needs hearing test, and constructive surgery. We don't know much about this process yet. Microtia/Atresia. Before he came home at three weeks old, we were told he could not hear anything out of his right ear. I started to believe otherwise when I would whisper in his ear and he would completely understand me. So a couple of months ago we took him to the Audiologists and found that he can hear, it is more of a whisper when you talk to him normally, but he can hear out of his right ear. The surgeries will most likely take place sometime around the age of 8-10, we are looking at doctors now and finding the changes in surgeries impressive and excited to see what will happen in a couple more years!
  

• The right side of face: minor nodules (he has scratched one off) - not a big deal. By the time we left the hospital, he had no nodules (dog tags) left on his face! We since learned that when they have nodules on their skin like he did, that the chances are huge on having them on the inside of his body. When he came down with RSV it was right after his first bottle, so they thought he had a fistula between his esophagus and his lungs causing him to aspirate, This was Friday, on Monday they had ruled everything out and was suggested to test for virus...and that is what it was.

We learned a few things later on:

• Later we were told his jaw was crooked, that when he was a teenager he would need surgery to break his jaw and put it back into place. So about a year ago, I took Hyrum to a facial plastic surgeon. The doctor seeing Hyrum sucking his pacifier and then looking at his x-ray pictures told us that by allowing him to suck on his pacifier past the usual year (at the time Hyrum was almost 4), Hyrum would not be needing surgery as the sucking helped strengthen his muscles and straightened out his jaw...hence no surgery needed!
• Hyrum's head became deformed (flat on one side) over his first few months of life. At nine months, life became such that I was able to take him to the plastic surgeon for a helmet. We were told that 1) he is too old for a helmet, 2) he would grow out of it eventually. I asked why they didn't do something sooner as they knew Hyrum since birth and I was told that they didn't do cosmetic fixes on baby's that they felt wouldn't survive long enough to need it (in other words, they don't straighten out dead baby's heads) His head is straightening out very slowly and unless he has a buss haircut, or it's pointed out to you, one wouldn't be able to tell his head is symmetrical!
• Scoliosis. This was something that Hyrum developed over the first 6 months of his life. By the age of 2 1/2 (August), his curvature was 47% over the prior year he had gone from 25% to this 47%. At this appointment, we were told that in 6 months they would schedule an MRI and talk about surgery as they do surgery when the curvature is greater than 50%. We spent the next 6 months praying. Karl (at the time would have been about 6) prayed faithfully for his brother's back to heal and get better. At his appointment in February, we were told his curvature was 36% and there would be no MRI or surgery at the time, see ya in 6 months. I went home and got in my little 6 years old's face and told him it was all his fault. He really thought that he did something wrong until I started to cry. I told him what the doctor said about his back getting better and told him that it was his prayers that fixed his baby brothers back. We had six more months of prayers and in August of 2010 we found Hyrum's curvature to be 26% and the doctor was shocked and said that sometimes this happens, but not very often and see ya in one year! We expressed huge amounts of joy with our kids as we again watched a miracle in Hyrum's behalf. In August of 2011, Hyrum's curvature was 21%. The doctor commended us for putting Hyrum in both swimming and gymnastics the past summer. He keeps up the gymnastics, but the swimming interfered with his school so he will do the swimming again this coming summer!
• Upon seeing a geneticist we learned that Hyrum has a Medical Terminology for his issues. He has a mild form of Oculo-Auricul-Vertebral Spectrum. In other words, he is non-symmetrical top to bottom with his right side more in front of his left side causing everything in the middle to be miss aligned. He should have had kidney and liver issues, extra fingers, deformed fingers, etc. and he had a mild form of this Syndrome helping us to feel very blessed.