March 20, 2008
Since my last update, we have added more friends and family to our email list. So I would like to start by just introducing Hyrum better for those that are getting this the first time. For those that know the whole story, can review or skip down to the bottom for the latest update!
Hyrum was born March 13, 2007. The pregnancy from the get go was about what we had expected. I have many various degrees of complications with each of my 3 other children, and this was no exception. We were grateful to a niece of mine that came to stay with us for about 2 months during the first stage of problems. She was a great help with our children, and stepping in where needed around the house. In November, at my 20 week appointment, it was discovered that our unborn child had some kind of mass in his abdomen. Because of how tiny he was at this time we did not know anything more. In December, while having an x-ray done with a specialist it was decided that this mass was in his intestines, but it was inconclusive what was causing the blockage. In January, we were transferred to a different specialist at University of Utah Hospital where it was decided that he may not have an actual anal hole, though it was difficult to tell because everything, including the anal dimple, was as it should be. In January, my mother started making the trek to help as little Hyrum was thinking he would like to come and meet his family 3 months too soon. She would go home Friday night to her house and come back to my house Sunday nights to help get kids off to school Monday morning. I was hospitalized about every 1-2 weeks for an overnighter to stop contractions.
He was finally allowed to come 2 weeks early on March 13th. Since this time, he has captured the hearts of every nurse, doctor, and "Grandma" that has come in contact with him. Even while taking him to the grocery store completely covered in his car seat, I get people that will stop me to ask and see my baby. Sometimes I wonder why it is they have to stop me, not the dozen other mom's in the grocery store with their baby's covered. But I have come to learn that his spirit draws people to him and his big brown eyes capture their hearts. Some have told me that looking into his eyes you wonder if he can see into your soul. He seems to know that he choose this life, and when I personally look at him, I believe that he choose our family to help him through those struggles.
He seems to not be able to take the easy way, he expects to experience it all. Hyrum has undergone, 11 surgeries with 14 procedures and red lined it 5 times due to overdose or bad reactions to pain medications. He has had enough x-rays, I think he could light up the sky with the contrast. He has been in to see various Dr.'s at least 40 times in the past year. He has had RSV once, Bronchitis at least twice, and a cold at least once a month since he was born.
At about 9 months, Hyrum quit growing or gaining weight. He has been the same 15-17 lbs since. After his last surgery, he actually started to gain weight. He finally broke the 18 lbs mark. Hyrum is now 13 months old. He is very calm and happy. He still does not sleep through the night (and in fact still gets up every 4-5 hours). Since his last surgery, he has decided he was done drinking breast milk and went cold turkey and has since been eating about 8-12 oz of baby food 4 times a day. He enjoys a good drink of water and will tolerate drinking the cold cow milk that is offered him. For his birthday he got a bouncer which he spends most of his time in. He has been working his leg muscles with his bouncing. He is rolling all over the floor to get to his toys, and has started to try to get onto all fours for crawling, but doesn't quite have the strength in his stomach to pull himself up.
Last week we saw the Plastic Surgeon, to find that there is nothing they can do for the odd shape of his head. But as he grows and sits up more and rolls more, it should slowly even itself out better. This coming week he sees the ENT, for a follow up of his Tonsils and Adenoids that were taken out six weeks ago. Then on to next week with a sleep study and the spine specialist (two different appointments). Hyrum had an x-ray done on his spine, to find that he has a 25-degree curvature. In two weeks he has another x-ray to make sure his urethra is healed and in three weeks we are hoping to have his colostomy closed and so that we get a poopy diaper instead! It is likely that he will come home from the hospital on Sarah's Birthday.
This past weekend, Hyrum woke up to a very runny colostomy bag (poop bag) and excessive throwing up. Another trip to the Dr's office and running more tests found that Hyrum has the Rotavirus. It lasts up to 10 days, with extreme runs and throwing up. We have been working to find the balance of feeding him Lactaid Milk mixed with Pedialyte in small enough amounts to help him keep it down without losing it. We have gone through more blankets and towels in this past 2 days than we usually do in a few weeks. He cries constantly for more food, but when we give in, he ends up losing it all over everything. He has lost the 2 pounds of weight that he gained and looks very skinny (not that he was chubby before) but his face is looking very thin.
This was today, the only time I could get him to smile.
We would like to thank those that have been around and helped or listened to us this past year. Sometimes it seems to have flown by and other times, it seems to be crawling by. We thank each one of you for your thoughts and prayers that you have sent our way. We know that it has been the combined efforts and prayers that have kept this little guy with us.Hyrum was born March 13, 2007. The pregnancy from the get go was about what we had expected. I have many various degrees of complications with each of my 3 other children, and this was no exception. We were grateful to a niece of mine that came to stay with us for about 2 months during the first stage of problems. She was a great help with our children, and stepping in where needed around the house. In November, at my 20 week appointment, it was discovered that our unborn child had some kind of mass in his abdomen. Because of how tiny he was at this time we did not know anything more. In December, while having an x-ray done with a specialist it was decided that this mass was in his intestines, but it was inconclusive what was causing the blockage. In January, we were transferred to a different specialist at University of Utah Hospital where it was decided that he may not have an actual anal hole, though it was difficult to tell because everything, including the anal dimple, was as it should be. In January, my mother started making the trek to help as little Hyrum was thinking he would like to come and meet his family 3 months too soon. She would go home Friday night to her house and come back to my house Sunday nights to help get kids off to school Monday morning. I was hospitalized about every 1-2 weeks for an overnighter to stop contractions.
He was finally allowed to come 2 weeks early on March 13th. Since this time, he has captured the hearts of every nurse, doctor, and "Grandma" that has come in contact with him. Even while taking him to the grocery store completely covered in his car seat, I get people that will stop me to ask and see my baby. Sometimes I wonder why it is they have to stop me, not the dozen other mom's in the grocery store with their baby's covered. But I have come to learn that his spirit draws people to him and his big brown eyes capture their hearts. Some have told me that looking into his eyes you wonder if he can see into your soul. He seems to know that he choose this life, and when I personally look at him, I believe that he choose our family to help him through those struggles.
He seems to not be able to take the easy way, he expects to experience it all. Hyrum has undergone, 11 surgeries with 14 procedures and red lined it 5 times due to overdose or bad reactions to pain medications. He has had enough x-rays, I think he could light up the sky with the contrast. He has been in to see various Dr.'s at least 40 times in the past year. He has had RSV once, Bronchitis at least twice, and a cold at least once a month since he was born.
At about 9 months, Hyrum quit growing or gaining weight. He has been the same 15-17 lbs since. After his last surgery, he actually started to gain weight. He finally broke the 18 lbs mark. Hyrum is now 13 months old. He is very calm and happy. He still does not sleep through the night (and in fact still gets up every 4-5 hours). Since his last surgery, he has decided he was done drinking breast milk and went cold turkey and has since been eating about 8-12 oz of baby food 4 times a day. He enjoys a good drink of water and will tolerate drinking the cold cow milk that is offered him. For his birthday he got a bouncer which he spends most of his time in. He has been working his leg muscles with his bouncing. He is rolling all over the floor to get to his toys, and has started to try to get onto all fours for crawling, but doesn't quite have the strength in his stomach to pull himself up.
Last week we saw the Plastic Surgeon, to find that there is nothing they can do for the odd shape of his head. But as he grows and sits up more and rolls more, it should slowly even itself out better. This coming week he sees the ENT, for a follow up of his Tonsils and Adenoids that were taken out six weeks ago. Then on to next week with a sleep study and the spine specialist (two different appointments). Hyrum had an x-ray done on his spine, to find that he has a 25-degree curvature. In two weeks he has another x-ray to make sure his urethra is healed and in three weeks we are hoping to have his colostomy closed and so that we get a poopy diaper instead! It is likely that he will come home from the hospital on Sarah's Birthday.
This past weekend, Hyrum woke up to a very runny colostomy bag (poop bag) and excessive throwing up. Another trip to the Dr's office and running more tests found that Hyrum has the Rotavirus. It lasts up to 10 days, with extreme runs and throwing up. We have been working to find the balance of feeding him Lactaid Milk mixed with Pedialyte in small enough amounts to help him keep it down without losing it. We have gone through more blankets and towels in this past 2 days than we usually do in a few weeks. He cries constantly for more food, but when we give in, he ends up losing it all over everything. He has lost the 2 pounds of weight that he gained and looks very skinny (not that he was chubby before) but his face is looking very thin.
This was today, the only time I could get him to smile.
April 20, 2008, Email to Dr. Downey,
Just letting you know that it is affirmed, Hyrum has the rotavirus. He has a huge amount of stool coming out, but we were told to pay more attention to his output of urine and his input of drinking. We are trying to find the balance of giving him as much liquid as possible without having him lose his lunch at the same time. He is pretty miserable and thinking we are starving him to death. He has slept most of the day, and we hope he will sleep most of the night. I was told that he was contagious up to 12 days from the start. This puts us at May 1st. John and I are debating on whether we should cancel his three doctor appointments that are in this time frame.
Do you think this may affect our closing his stoma the middle of May?
April 22, 2008Just letting you know that it is affirmed, Hyrum has the rotavirus. He has a huge amount of stool coming out, but we were told to pay more attention to his output of urine and his input of drinking. We are trying to find the balance of giving him as much liquid as possible without having him lose his lunch at the same time. He is pretty miserable and thinking we are starving him to death. He has slept most of the day, and we hope he will sleep most of the night. I was told that he was contagious up to 12 days from the start. This puts us at May 1st. John and I are debating on whether we should cancel his three doctor appointments that are in this time frame.
Do you think this may affect our closing his stoma the middle of May?
I apologize for not keeping up with the emails but this weekend I was on call and it overflowed into yesterday. I hope he is ok. I will be down to Provo on Th and if he is still in the hospital I will drop by. I am not sure about the closure at this time. These rota infections are seriously bad news sometimes and we will just have to see. Getting diarrhea with a brand new GI tract through a colon that has never been used could be a really bad thing. They always have a serious butt rash anyway but the rota could make it bad. I will keep in touch. Sorry, I am so busy!
I figured you were either really busy or out of town. We are up here at Primary's as Dr. Conner thought we would be turned away at every other hospital in Utah Valley with his colostomy issue. Hyrum has been doing much better today. (relative) He is eating tons better, once I showed him a jar of baby food, that is all he wants to eat. His stool is still very runny and he puts out an extreme amount. His potassium was high until today and his sodium has been really low and still is. But the nurses (most know him from previous visits) gave him a mat to play on the floor on and lots of musical toys(his favorite) and he seems to be even happier. I imagine we will be here until at least Thursday. Being his fever is gone and he is keeping food down it will depend on his stool output slowing down and thickening up.I wondered if we may have to push back his surgery due to the virus. And in truth (except for the times his bag explodes due to too much fluid) it has been pretty easy to deal with the diarrhea being in the colostomy bag.
Here are a couple of pictures, one before and one after he got his toys!
Well, the Rotavirus has taken its toll on Hyrum. He was able to drink enough, but his body was not absorbing the fluid. Everything was going straight through. If he ate anything more solid than Lactose-free milk, it would come back up. After a very long night and an even worse morning. John and I decided to take Hyrum to the hospital. He has been hooked up to an IV since about 11 am. He has started to finally pee more than a tsp/hour, but it seems that he is still not absorbing anything as his stool output is off the charts. He is on medication to help him absorb his intake food better. He will remain in the hospital until he can tolerate solids again and get off of the IV. 
Jennifer,
Hyrum has definitely hit a brick wall. Two weeks ago he weighed in at 18 lbs. (record high) After two days of this virus, he has lost almost 3 lbs. Last night he was up every 20 minutes wanting to eat more. If I feed him too much in one setting he throws everything up, so I can only give him about 1/4 of what he is used to. And he isn't getting the concentration of food like he is used to, so between not enough food and feeling yucky, it was a very long night. To make matters worse, he ate more than I anticipated so I ran out of fluid about 3 am and had to run to the store for more (Thank goodness for 24-hour stores).
I slept for about 2 hours before I brought him to the hospital and got another hour in when they finally put us in our room for the night. Because I slept this morning, I ran out the door without eating making it a long day as I didn't get good food to eat until 4pm. As much as I don't care for granola bars, they can come in handy every once in a while.
Since being admitted, he has not thrown up. I have been very careful as to what he drinks. The IV's are helping, but his output in his colostomy is way beyond normal. So we get to hang out at the hospital, ignoring everything that I had hoped to do this next week and figuring out how to adjust various Dr. appointments to fit our new schedule.
But I guess the best part is, life keeps going! And I keep telling myself that this too shall pass...and I have been telling myself that for the past year...one day it will happen!
also feel that Hyrum is on borrowed time. The spirit around him is so strong that it is like being close to Heaven. I try not to think about that borrowed time, but try to enjoy every moment that I have with him, whether it be another day, week, month, year or years. It has been an honor to know, hold, and love him.I slept for about 2 hours before I brought him to the hospital and got another hour in when they finally put us in our room for the night. Because I slept this morning, I ran out the door without eating making it a long day as I didn't get good food to eat until 4pm. As much as I don't care for granola bars, they can come in handy every once in a while.
Since being admitted, he has not thrown up. I have been very careful as to what he drinks. The IV's are helping, but his output in his colostomy is way beyond normal. So we get to hang out at the hospital, ignoring everything that I had hoped to do this next week and figuring out how to adjust various Dr. appointments to fit our new schedule.
But I guess the best part is, life keeps going! And I keep telling myself that this too shall pass...and I have been telling myself that for the past year...one day it will happen!
Whenever I think about the past year and look at individual experiences that he and even I have been through I am moved to tears. I was visiting with my mother on her anniversary a few weeks ago, and we were talking about Hyrum and some of his very close calls. She asked me what I thought about his struggles, and I told her (through tears) that I know Hyrum was meant to come to my family, and when the Lord is ready for him to come home, he will. I hope and I have faith that he will be here for a wonderful lifelong time, but back in November before he was born, when John and I first learned we would not have a "normal" child, we both put this child in the hands of our Lord to do as he needed. And I have those thoughts daily of how long I will get to keep my miracle baby and enjoy what I have!
April 22, 2008
Hyrum is doing SO much better today. Yesterday his potassium was high and his sodium level was low. Today only his sodium is still low. He woke up very happy this morning, so his nurse brought him some toys to play with and a mat to play on. As I was eating my breakfast he gave me the "where's my food" look and the lunch look was even deeper. So we gave him some baby food from a jar, and he begged for more. He has eaten really well today. His stool output is still on the very high end and this may put a cramp on our colostomy closer next month as it would not be good for him to be stooling through a new hole and have it be diarrhea. But time will tell.
We got visits from his Grandma and Aunt and brother and sisters. Karl got to spend a few hours with us and got on the floor to play with Hyrum. I think this was very therapeutic for both of them. Rachel and Sarah came and were very glad to see him looking very good.
I am semi-hopeful for coming home sometime the end of this week, but it will all depend on how well Hyrum does in the next few days.
Thanks to all for your words of encouragement and especially for your prayers!
Yes and just to get even with me, 10 minutes after I sent the email, he pucked it all back up:(...we will see what tomorrow brings!
April 23, 2008 
Last night a Resident Doctor that works in the infant unit calculated how much stool Hyrum was putting out for his body weight and then figured it to herself if she were putting that much out compared to her body weight. Hyrum weighs in at about 16-17 lbs and is less than 30 inches long. This lady is roughly 5' tall and max weight would be 110 lbs. So if she were stooling the same amount for her body weight is that Hyrum did in the last 24 hours she would have put out 11 litters of stool. This gives you all an idea of about how much diarrhea Hyrum is having...LOTS!Last night after I sent out the email, he pucked a good couple of times. This morning after eating a few times he again lost his lunch. Since then I have put him back to his Lactose-Free Milk as his pediatrician suggested he be on until this was over and he is allowed to drink Pedialyte.
He has slept for most of the day, I am hoping that it is his body's way of fighting this virus off.
Originally it was planned for Hyrum to have his closure surgery the middle of May. This virus will affect the Dr.'s decision about continuing as planned or postponing the surgery.
We had Karl for a few hours today while his Grandma ran errands and drove my sister Martha around to her various schooling appointments. Though I missed the picture of Karl playing with his cars under Hyrum's bed, I will not miss it again. But here is a picture of the two playing together.As for the future, to get out of the hospital Hyrum will have to be off the IV, stooling thick (or normal) and eating normally without losing it a few hours later. The infant unit Dr. suggested this could take anywhere between 7-10 days. And that one day, it will be like a shut off valve had been switched and Hyrum will be back to normal and be fine.
Hyrum's Thursday was much better than Wednesday. He still had a minor throw up, but not much to worry over. His stool is starting to thicken up and instead of using syringes to remove the stool, we actually have to take the bag (not the disc) off and replace with a new bag because the stool is too thick to go through a syringe. His stool has also decreased in half from yesterday!He has slept through most of today, and for the past few hours, wondering if I had actually allowed him to mess up his days and nights. (Yikes!) But he is settling down (Hooray!) for the night. He is eating more, drinking more, wanting to play more and be on the floor with toys surrounding him more.
Today we got another visit from Karl, and I made sure I got the picture of him playing under Hyrum's bed!
Hyrum even gave Grandma Burrell (my mom) the privilege of cuddling with him before he went down to the floor to play with his new toys provided by the hospital.
Tomorrow is another day, but we are continually praying for improvement with each day!
April 25, 2008
Today Hyrum's electrolytes were very close to normal. And his stool output was down 1/3 from yesterday. So they felt that he did not need an IV. Which means that I had no use for the hospital, as I was there for the IV and for hydration. So we came home today. Hyrum is doing much better, he is eating, he is drinking, he is laughing, and singing!
We had a cousin show up about 45 minutes before we got discharged and he happily carried Hyrum on his shoulders out to the van, while carrying a few bags in one of his hands, while I got the rest of my stuff and out the door we made it in minutes from the time I signed the discharge papers. I don't think I have ever been discharged so quickly before!!!
We had a cousin show up about 45 minutes before we got discharged and he happily carried Hyrum on his shoulders out to the van, while carrying a few bags in one of his hands, while I got the rest of my stuff and out the door we made it in minutes from the time I signed the discharge papers. I don't think I have ever been discharged so quickly before!!!
And of course, Rachel was the first to give him a hug, which he loved thoroughly! Least to say, everyone was happy to have us home!