Reflection...  Looking back

Life Changes… 

In the end, looking back, you can see it’s the load that can make the difference for good.

When you get a diagnosis for your child that equates to them not being perfect, it takes time to process and absorb. What does this mean? What kind of life will they have? How will this affect their future? 

My life changed November 2006. I was going in for a routine 20 week check up.  I already have problems with hemorrhaging (bleeding) from 12-20 weeks. But I only spotted this pregnancy. Everything was going well, I was anticipating being let off bed rest. To go on with my normal pregnancy and my normal baby and my normal life.  I knew at 16 weeks that we would be bringing home our 2nd son. A brother for our 3 year old.  He was very excited to get his best friend.

At our 20 week checkup, the doctor decided to do an ultrasound to make sure everything looked good with the placenta.  I was laying on the table with my husband beside me, the doctor was looking very intently at the monitor. After what seemed for forever, I asked about the placenta (as that was the problem, right?), He moved the wand across my belly, “yup, the placenta looks great” as he moves the wand back into its previous position, he paused again and my husband pointed at the screen. I knew instantly that there was something wrong with my baby.

There was a mass in his abdomen. We were sent to a specialist that specializes in in vitro surgery. He watched us every week for another couple of months. It was decided that while our baby boy was growing, the mass was staying the same size. In vitro surgery was ruled out. We were then sent to a high risk pregnancy doctor at the University of Utah. After a few more weeks, it was decided that while our baby indeed needed to have surgery, he would not need it until after he was born.  A phone call was made and a surgeon was picked out. We still had so many unanswered questions. Why the mass? What was the mass? What did this mass mean for our son?

After spending 3 months in and out of the hospital due to contractions, at 37 weeks, it was decided that he was big enough for surgery. My induction date was set for March 13, 2007, two weeks early. Upon birth, it was confirmed that he was born with an imperforated anus. Or, he had no bum hole.  We also learned that he had a deformed right ear lobe and possibly no ear canal.  Surgery was set for first thing the next morning, he was to be given an ostomy bag while they figured out where his intestine ended as it was not attached where it should have been.

HYRUM IS BORN

 

Hyrum was diagnosed with Oculo-Auriculo-Vertebral Spectrum. In English, this means that Hyrum is non-symmetrical. He also has a Microtia/Artresia of the right ear. We felt blessed as there are many other problems that are usually pronounced with these two deformities, none of which Hyrum has had. 

His main issue at the time was that he was born with an imperforated anus. Hyrum had 14 surgeries to correct this from the time he was born until he was 15 months. Hyrum's 15th surgery was the removal of very large tonsils and adenoids and the removal of a facial fistula (or skin tag) done at 12 months old.

Hyrum also has had a hard time with narcotic pain medications. He has stopped breathing about 3-4 times. Most doctors are afraid of Hyrum as they fear to know what else will cause him to overdose.

Hyrum has also been diagnosed since then, with having scoliosis. At Hyrum's 2 1/2 appointment Hyrum had been getting steadily worse in curvature. His all time record was 46% at this appointment. We were told that in 6 months we would be looking at MRI's and possibly surgery. We were encouraged to let him climb, hang on things, and be more physically active. We also prayed very hard! 6 months later at his 3 year appointment Hyrum was down to 35% curvature. And at his 3 1/2 year appointment Hyrum was at 26%. We currently see this doctor now only 1 time a year and at 4 1/2 years his curvature was 21%.



We started doing nightly enema's to control his bowel enough for him to wear underwear at the age of 4. Hyrum has had so many x-rays that I think he glows in the dark. He does not fight us, in fact he enjoys enema's thanks to an iPad that was gifted to us. He knows his alphabet letters and sounds, and is working on reading. He also loves watching Asian YouTube of Thomas the Train.

Hyrum has a zest for life. It takes a lot for him to feel pain, he loves to laugh. His favorite saying at age 4 was "Oops, I burb" or to blow bubbles and state: "Oops, I fart". When we go to the Doctor he tells me "it's your turn, it's not my turn mommy."

August 2014, Hyrum has had an Appendicostomy. This allows us to do flushes through his belly instead of with enema's.  This has given him a lot more control of his bowel movements.  We have been very fortunate that he doesn't fight us over getting them done.  Sometimes, he doesn't want to be bothered by them as he is doing something more fun, but he doesn't fight us off.

Hyrum had his 20th surgery Sept 23, 2015 to have Constructive surgery on his right ear lobe and canal.  He has loved having his "new ear" and showing it to other people.

Hyrum loves to laugh and make others laugh.  When taking pictures of this young man, he cannot help but make a face. Hyrum loves to learn. He has taught us what a water engineer is and how to water our garden.  He loves to be outside and wandering the fields.  He has such a great imagination.

THE FAMILY IMPACT

What did all of this mean for his family? The first two years of Hyrum’s life, he was not allowed to cry (as this put too much strain on his intestines), which took a herculean effort by the family to keep him pacified under all situations. There were many nights during the first 7 weeks that Hyrum was in NICU and then PICU that his parents were not afforded a bed to sleep in, so I spent many a night sleeping a few hours in a sleeping bag in the back of the SUV in the parking lot in this cold Utah winter climate, this allowed me to be close for any complications that arose.

Once home, Hyrum could not nurse due to decrease muscle strength in his jaw. It was too much work for him. I was expected to pump for the nutrients that he could only get from his mother and feed it to him in a bottle. I learned to be resourceful and used a piece of fabric to hold the bottles in place while pumping, allowing my hands and arms to be free to hold Hyrum while he drank his milk from the previous pumping session. There were many nights that Hyrum would pass a lot of gas causing his ostomy bag to fill up with air and come off his stomach. This would create a 2 am chance to clean Hyrum, his bed, and change his ostomy bag. This process would take one hour on a good day. I spent many nights sleeping in only 1-2 hour increments to be up by 7 am to get the other 3 kids off to school as John would leave for work at 6 am.

Hyrum was 15 months when he had his pull through surgery. He was under 20 lbs. He was the size of a typical 9-month baby. And his physical and motor skills where that of a 9-month old baby. After this surgery, his motor skills started to take off. He was crawling by 16 months and walking at 18 months old. Hyrum finally started to sleep through the night at 2 ½ years old.

We decided that we needed better medical coverage for Hyrum. I had talked with many of the nurses and CNA’s while Hyrum was in the hospital. I found a 2 week course to get my CNA and started to work on a Surgical/Transplant floor at IMC in Salt Lake City where I was quickly deemed the night shift ostomy bag queen. If there was an ostomy bag on the floor, it was automatically given to me as I was the fastest and could get them to stay on the longest. I would end up in the room whether the patient was mine or not, so it was just better to give that patient to me in the first place.

And thus, medicine became a big part of our lives. First for ourselves and Hyrum, then we began to help others.

HYRUM’S FIRST 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 its 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 like 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 collar bone 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 more meaty 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 supports 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 himself in a complete upright sitting position on my lap....holding his 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 witnessing. 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 longterm 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 taken 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 afterwards.


•    Right Ear: Needs hearing test, and constructive surgery. We don't know much about this process yet. Microtia/Artresia. 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! 


•    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 into 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 hair cut, 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 year 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 on 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 geneticists 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.

In the Lord's Time frame

If you haven't guessed from previous posts, my family is members of the Church of Jesus Christ of Latter Day Saints. Another name would be LDS or Mormons.  I teach the kids that are 8 years old turning 9 right now.  This year we are studying the Doctrine and Covenant and the Life of our first prophet Joseph Smith.

This weeks lesson comes from Doctrine and Covenants sections 5-10 and Joseph Smith--History 1:66-67. This was after the 116 pages of manuscript were lost, Joseph had the plates taken away and returned, and he was attempting to translate on his own.  This was turning out to be a very slow processes. He was feeling very overwhelmed with this task and decided to pray and ask for help.  He was told in D&C 10:4 to not run faster than he was able to and in D&C 5:30, 34 he was told to finish what he was doing and then to stop and stand still for a time, and that the Lord would provide a way for him to finish.

And so he did.  He finished the pages he was working on, and put them aside for a season.

During this time, a young teacher was staying with his parents in Palmyra NY. After much persistance and patience, he was finally able learn about the Golden plates and their son Joseph Smith.  He gained a testimony for himself that Joseph was indeed the Prophet and asked to meet him.  Joseph's younger brother Sam took Oliver to meet Joseph.  Upon meeting Oliver, Joseph new immediately that the Lord had provided a way for him to finish translating the Book of Mormon.  Translating began shortly after this.

I feel that this can be applied to our own lives when we are running faster than we feel we can.  When asked, the Lord will provide a way to help us or encourage us or to give us the means to finish the task that he has set forth for us.  As an example, I have felt very impressed that I needed to finish my bachelor's degree.  I ended up with a full semester in hopes to finish up quickly.  John has found himself struggling to keep working and to keep up on kids and home while I am away.  We prayed to know what to do.  I could have dropped a few classes prolonging my time in school, but making it more manageable.  The answer came back with a strong "no stay in school."  We were not sure what to do then.  We were both feeling the stress of my long days.  The answer came from the volunteering of John's parents to help us out.  John's dad would come each morning to help get the boys off to school and 3 days a week they would have the boys dropped off at their home after school and cook them and John dinner.  This became such a blessing in our lives as we were able to get our work and school done without leaving the boys to their own devices.  Just like Oliver was an answer to Joseph's prayers, John's parents were an answer to our prayers as we were struggling to follow the Lord's commands.

Do you have this in your own life?  Have you noticed a time that someone or something has aided you.  Sometimes, it is that we are to hold off until a better time, just like Joseph waited until Oliver would come to him.  Sometimes it happens fast.  But the Lord is mindful of each one of us and while he allows us our trials, he does bring relief.