1st Surgery, that turned into 3.

First I want to say that I was going to write it all out. But I couldn't do it. I went through my docs and found that I had cut and paste all of my emails into a word doc. Just this digging was difficult, but much more doable than the actual writing. So it will read like an email/Journal entry. But, I feel it gives a few more details than I would normally have done also. So When It's me talking now, reflecting back I will put it in italicized writing to show a difference.

March 14 (Wednesday)

Hyrum was born yesterday at 3:15pm he is 19.5 inches and 7 lbs 9 ounces

He is a cute dark haired baby that has been very calm considering all he is going through. He was born without a rectum. He has a problem with a growth on one ear, the other ear didn't develop much and we need to find out if he has an ear canal, drum etc. in that ear. And today he goes in for tests to determine if he has other Heart or Kidney deformities. He will start surgeries in a couple of days starting with helping him be able to eat. Looks like a long road ahead for the poor kid, but he is loved.

Hyrum was able to get on the surgery schedule today. Our neighbor Becky Ekstrom was a Surgical Nurse at the time at Primary’s and had the privilege of participating in the surgery.

Hyrum was given a colostomy & stoma to allow the stool to come out of his intestines. Essentially they cut the colon part of his intestine in half and put both ends onto his abdomen.

March 15 (Thursday)

Hyrum was taken off the ventilators, but still on oxygen. He is such a calm kid. I think the Lord new some kids need that calm spirit to go through the hard walk of life before them. Spine x-rays done today. Monday or Tuesday is the hearing test.

Hyrum is a very strong little boy. He doesn't cry much and endures the pokes and prodes better than I could. His feet are black and blue from the needles. He calms right down when I speak to him to the amazement of the nurses. In talking with various Dr.'s we feel very blessed that there are not more problems. They have a list of physical problems that should be wrong with him. But other than the intestinal problem and his ear, he is very healthy. We feel truly blessed by the Lord for what we have. We hope to have him home in the next few weeks, but will keep him sheltered for awhile yet.

Everyone else is doing well, the kids can't wait until he comes home so they can finally see more than pictures.

I think it will be 3 months before the next surgery on his intestines, but we don't know about his ear or anything else so far.

I was released from the hospital today, I think it was the hardest thing I had to do up to that point; to leave my child behind in the hospital. Having him an hour away has been very difficult on me. I spend a lot of time on the road instead of with him or my other kids. Karl and Sarah especially are extra cuddly, but all are sad to not be able to see Baby Hyrum.

We hope to have him home in the next few weeks. He has more tests the beginning of the week. I have to learn how to change his "pooping" bag before he can go home.

The Lord has truly been with us through the pregnancy and the various steps of after birth surgery.

March, 16 (Friday)

Hyrum got to eat today. Hyrum was able to drink a little milk from a bottle as his first surgery on the intestines went well, so hurray for Hyrum. He was also off of oxygen, ventilator and such.

It was nice to be able to hold him without so much "Equipment"

We were so surprised at how much hair he came with. I had to watch the Nurses with the IV's as they would put them in his head and the bandaging made it look like he had a bow in his head.

Hyrum wasn't so sure about the bottle at first, but learned to like all the same...

March 17 (Saturday)

This morning he has had a tube placed back in his throat to assist his breathing as one of his lungs has partially collapsed. The ear, nose, throat team hasn't seen him yet, the plastic surgeons are also another group that need to see him, and now he needs to have the neurologist and team come see him as he has some deformed vertebrae in his neck and may need braces in his neck. Another thing that has been discovered is that he has an extra set of ribs which have fused with his collar bone disrupting some things there.

The intestines are the only issue we knew about before he was born, but as I tell everybody, I have been at peace with the situation since I received a priesthood blessing last Sunday. I can not deny the power of peace that was given to me at that time and it carries me through, because I know that everything will work out and this child will be a survivor and an example to those around him. He already has had an impact on my family and the nurses can not stop talking about the peaceful spirit that is around him. Everybody falls in love with him on first glance.

March 18 (Sunday)

Well, Hyrum now has the tube out that they placed in him the last 24 hrs, they had to make an incision in his chest to help with the partially collapsed lung. He is still having problems breathing too fast due to some lung problem they can't figure out. They will be trying oxygen this evening to see if it won't help... He is also hungry but not allowed to eat due to his breathing issues. Hopefully morning brings good news. His belly-Rubin / jaundice also was high so he has been under the lights, which isn't that big of a deal, but he is not happy with the tanning process :-)

Sunday we got dressed in our own clothes for the first time!

Notice how Hyrum is studying his Dad. He had a way of looking you and knew that he knew you.

March 19 (Monday)

They are doing tons of tests today, so I plan on being here most of the day, otherwise I don't learn or keep track of what they do to him.

They finally found that he has a mild new form of RSV. It isn't as serious but they still keep a close eye on him. They also think his rib cage is heavy causing him to have a harder time breathing. He doesn't cry often. He is such a trooper.

March 20 (Tuesday)

Hyrum is in isolation now as he has a very mild form of RSV. He had one bottle last week, but not since. He is working to hard to breath, so they won't let him. But they may give him a tube through his nose to his stomach to give him some substance and help him gain weight...two things he really needs. I will be in the hospital all day again. We don't trust the nurses, some of them are pretty ditzy. So I hang around to make sure he gets things he needs and keep things
away from him that I don't like.

March 22 (Thursday)

We are still hanging on for the ride. Hyrum is getting better. He is getting food through a tube up his nose, but he has yet to poop, so we will see what will happen with that. We are still waiting for his respiratory to go down so he can have a bottle...this being the main thing he must do before leaving.

My kids will be spending the weekend with my mother. She has been at my house, but they don't have school tomorrow, so she will take them to her house to give her some ''home'' time.
Otherwise we are doing as good as conditions allow for.

His stomach is digesting the food so they have upped his food intake. He still hasn't pooped so I will ask about that. His respiratory is in the 60's on average, sometimes higher. So I don't think the bottle will come today.

Catherine (the Nurse) is here today. So I will go home after rounds today and then meet mom in Salt Lake about 3:30 (give or take some) so she can turn around and go home with the kids and I will come back to the hospital at that time. Hyrum was pretty fussy for a while but has calmed down and is a sleep now...it took me to calm him down...Catherine says he must have needed
mom.

Well, we are getting closer! I believe he will poop today. That's my faith. :) He was squirming earlier...so I hope something happens. I keep telling him ''pooping'' thoughts!:)

Rounds came...they are letting him be fed by anyone, around the clock to see how he does. They will let him increase his intake through the weekend and re evaluate him on Monday. We, of course, are still waiting for his ear test. But that isn't surprising. I have found, in looking in the past, that when I leave early something happens...lately not good things. Do we want to chance it
and have me come home sooner? He has a very good nurse today...

March 23 (Friday)

We have truly been on a roller-coaster this last week.

After many tests, including one to see if he had a connection between his esophagus and his airway (which was negative), they found that he had "metapneumovirus". Just for the record I had to look this name up and I have yet to be able to say it out loud because it is so long...so in English this is a milder form of RSV. Where he got it from we have no idea, but it has messed with his respiratory. This put him into isolation. To see him every person, nurse, or doctor is supposed to wash his/her hands before and after touching him, where a mask, and a gown. This has helped to limit him from being exposed or exposing other people.

On Tuesday, they deemed that he needed food, but was not ready for a bottle. So they put a feeding tube down him...this he didn't like until his tummy started to fill up with food and then he quit complaining about the tube in his nose but rather started complaining when his tummy wasn't full.

(background for next paragraph: As Hyrum has no outlet for his poop from the intestine, the lower end has ballooned full of fluid and other such stuff. His intestine ended up being cut in 2. The upper non ballooned part was to be connected to the outside world via the left side of his tummy, this is called the stoma. The part that was ballooned and needs time to heal was to be connected a few inches below the stoma so as to allow it to decompress and also in a couple of months to allow the surgeons to probe its length with dyes and such, this is known as the mucus fiscula)

Now that he was getting food, they started to watch his stoma Wednesday, because he hadn't had anything come out since Tuesday night but nothing seemed to change for the stoma. But the interesting thing they found was that he was having more poop drain from his mucas fiscula. This poop is supposed to be black, but on Thursday morning started to turn more brown. And lots of poop was coming out, making a mess as there is only gauze on the mucus fiscula not a stoma bag. The nurse (who has been our favorite from the beginning), while changing his bag, noticed the stitches were coming apart a bit and called the therapist who specializes in the stoma's. She in turn called the surgeon immediately. They had him in what is called a X-ray study (meaning they take multiple pictures of his intestine from different angles), with the actual surgeon in the room taking control. This was at 2:45pm, by 3:30pm we received a phone call (as I was taking a break to spend time with our three other kids for the first time) from the surgeon, Dr. Downey. He apologized profusely, and stated that somehow they got the intestines mixed up and the opening on the top should have been on the bottom and the bottom one should have been on the top and they needed to reverse them immediately. By 4pm he was back in surgery and was back in his room for us to see him by 6:30pm. (This is the miracle part to offset the mistake) Had Hyrum not gotten sick he may have been home on this past Wednesday, but because of his virus, he was still in the hospital. He had his preferred nurse who was smart enough to look closely at his incision and call for help immediately. If this had not been discovered the results would have been disastrous. As we talked with a nurse who has worked in the NICU for about 15 years, he told us this was the first time he had heard of this happening. I am grateful Hyrum was in the hospital as I may not have been able to see or notice the signs.
He of course is in a lot of pain, much more so than last time. They have him really doped up. He opened his eyes for a few minutes before they gave him his next set of pain med's. I had a hold of his little hand, and as he looked over and saw me, he literally jumped and reached for me with his other hand. I had never seen such an expression of relief mixed with pain. But the med's took over very quickly and he was back to sleep and totally out of it. They will keep him pretty drugged through last night and then slowly take him off through the day, so that by Saturday he will be awake.
So now we are starting back at ground zero.

They hope to be able to start the whole process over again, and perhaps if all goes well give him a bottle on Saturday. This will depend on his virus, as he seems to be doing better with his breathing, we are hopeful of this actually happening. Perhaps we can get him home next week. Give him a breather before his next round of surgeries.

We have appreciated the many emails and love, prayers, and support. We truly know the Lord is in control, for we surely are not!

March 25 (Sunday)

On Friday, Hyrum was in so much pain that they gave him the max amount. He has since been on the max amount. About 1/2 hour before his next dose is due, he starts to squirm in pain. Then if the nurse is not on top of it, when it is time for meds he starts to scream. And this coming from a very mild kid. His pain level makes me cry everytime. It is hard to watch. He is in a LOT more pain this round. His mucus fiscula is our other concern. Last time it looked like a
smaller version of his stoma. This time it looks sunken and very wide, like a sideways teardrop. We had Dr. Downey look at it on Friday and he hummed around and said that he had done it that way. It looks awful. You are more than welcome to come and see him. Maybe having
someone close to me and that I trust tell me it is ok, I might calm down. I am just afraid of him having to go through another surgery. I don't think Hyrum could take it and I know I cannot take it either.

March 27 (Tuesday)

Hyrum is good. His respiratory is down and they are letting him have a bottle, which he doesn't want as life has been to easy, so they have a therapist coming to evaluate him and make sure there is nothing wrong with his sucking ability. I am hoping to convince them to let him go hungry for half an hour and see if he will eat. It is amazing how this being number 4, that I have turned out to be the dumbest person in the hospital. Right now I think his feeding is the main reason he is still here now. He has been off the pain meds since Monday morning and he is almost eating what he should be and they will take his feeding IV out. Then we are home free...knock on wood that nothing else go wrong! Karl called me yesterday with a total meltdown. I am completely torn with kids. I hope to have this over in the next week. I may not be able to be away from home to much longer.

March 29 (Thursday)

Hyrum is doing good. He has to eat from a bottle or breast completely before he can go home. I chose bottle as I think it will go faster as he doesn't really open is mouth wide enough for the other. This morning he drank 15 ml which is double what he had last night. He has to drink 60 ml, which is about 2 oz.

I'm not sure when this took place. But the kids got to attend a "Sibling Class" They got to draw pictures of themselves,Sibling class.RachelSarahKarl playing with his Doll from sibling class. They got to play with colostomy bags and place them on their baby's

March 31 (Saturday)
Saturday morning, Hyrum was transfered out of NICU to the Infant Unit. The best part of this was that the kids could come see Hyrum for the first time. John arrived with the three kids as soon as they could get here. They were very excited to see their Baby Brother for the first time!
Rachel ready to meet her brother for the first time! Rachel checking it out.Sarah checking out her brother!
Karl checking out his "ouchies"Karl very upset that his brother was in pain. Karl has always been sensitive to others. Upon seeing Hyrum's Stoma (his bag fell off right before they arrived), Karl was positive that Hyrum was in pain!

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.

How Hyrum Got His Name

Most people wonder why it is we would name our child by the name of Hyrum Smith, especially when there is no relation between our Hyrum and the Hyrum Smith were we got the name from. Both my husband and I had just finished reading this particular book before the pregnancy even began. All of our other children are named for family members,
Rachel was named after my great-grandmother Evelyn Rachel Cox Bunker.

Sarah was named after multiple Sarah's on both sides John great-grandmother Sarah Florence Nellie Priday and my great-great-grandmother Sarah Riddle Pyle Cox. There are more than the two, but those are the closest ones.

Karl was named after my grandfather, Karl Theodore Bates at Rachel's insistence. A very funny story for another Day.

By the time January came along, John was talking more and more about this baby's name being Hyrum. I didn't want to have to answer the question: "Oh you're related to the Prophet Joseph Smith's Brother then?" Because in truth we are not related.

I went seeking support for my end to not have him named Hyrum, so I called my Brother Jonathan. He listened to my side of the story and then told this back to me "Jennifer, what an honor it would be to be named after someone like Hyrum Smith. It is a high bar you set for your son, but I believe that he was meant to reach that bar in his lifetime. He will have his own personal struggles and who better than The Hyrum Smith to look upon and tell himself, that if that Hyrum could go through what he did, then I can go through this." How was I to argue over that? His name became Hyrum John Smith.
But Hyrum and his family went through so many trials

HYRUM SMITH
Hyrum was Born February 9, 1800, in Tunbridge, Vermont as the second son of Joseph Smith Sr. & Lucy Mack Smith. Hyrum was the older brother of Joseph Smith Jr., who established the Church of Jesus Christ of Latter Day Saints and was the translator of the Book of Mormon. Hyrum was his brothers closest adviser and confidant. Hyrum was a great example of what an older (or any) brother should be like. Hyrum was one of the eight witnesses to examine and testify of the reality of the Golden Plates, the original source of the Book of Mormon. At the age of 30, he signed as one of the six men to sign as charter members when the church was first organized. Hyrum served as a presiding officer in Colesville, New York and was one of the first Latter Day Saint missionaries in the surrounding area.

On 2 November 1826, in Manchester, New York, he married Jerusha Barden (1805-1837). They had six children together. Lovina Smith (1827-1876), Mary Smith (1829-1832), John Smith (1832-1911), Hyrum Smith (1834-1841), Jerusha Smith (1836-1912), and Sarah Smith (1937-1876).

In 1831, as the church headquarters and members moved west, Hyrum and his family relocated to Kirtland, Ohio where he served as a foreman of the quarry providing stone for the Kirtland Temple. Between 1831 and 1833, Hyrum served a proselyting mission in Missouri and Ohio. After relocating to Nauvoo, Illinois, Hyrum was ordained as Presiding Patriarch of the LDS Church, a position formerly held his deceased father. Hyrum was also ordained by his brother Joseph as an Apostle replacing Oliver Cowdery as Assistant President of the Church; in this capacity, Hyrum acted as President of the Church in Joseph's absence and was designated to be Joseph's successor if Joseph were killed or incapacitated.

After Jerusha passed away, Hyrum married Mary Fielding Smith (1801-1852) on 24 December 1837 in Kirtland, Ohio. They had two children Joseph F. Smith (1838-1918) and Martha Ann Smith (1841-1923). In accordance with the early days of the LDS church, Hyrum married Marcy Fielding Thompson, widow of Robert B. Thompson and sister to Hyrum's wife Mary and Catherine Phillips August 1843.

When warned of possible danger, Joseph urged Hyrum and his family to flee to Cincinnati, Ohio. Hyrum refused and in 1844, traveled with Joseph to Carthage, Illinois where both were charged with riot and treason. Joseph, Hyrum, John Taylor, and Willard Richards were held awaiting trial in a jail in Carthage. On June 27, 1844, the building was attacked by a mop of between sixty and two hundred men. While attempting to barricade the door to prevent the mob from entering, Hyrum was shot in the face and exclaimed, "I am a dead man," as he died. Taylor was struck by several bullets but survived with the help of Richards. Joseph was hit by at least two shots, exclaimed "O Lord, My God," and fell through a second-story window to the ground where he was shot a second time.

Hyrum is credited in Church History with being an astute organizer who gave ecclesiastical leadership to the emerging Church. As a person, he was considered a man without guile.

I feel this last statement best describes Hyrum Smith and I hope that my own Hyrum can become a man that honors the name that he holds.