Surgery Delayed

August 3, 2007

Hyrum had an appointment on Thursday, August 2nd. We learned that the end of his intestine is attached at the base of his bladder by his urethra. This is actually considered very high. The surgery will take about 3 hours and the Surgeon will cut him in front to unattach the intestine and using a laser to find the best place for his rectum, they will create his new hole. He will be in the hospital for 3-5 days.

The risks are high, but still the surgery must be done for him to lose his "pooping" bag. Because the end is so far away there is only a 10% chance success. The second risk is he has a main artery that the surgeon will be cutting close to that if cut he could bleed to death.

Hyrum also is very small for his age. He is barely in the 5th percentile. He barely fits in 3-6 mo clothes. The 0-3 are snug. But I figured that 4 months was enough to wear them and it was time to wear some other cute clothes. Most people are surprised when they find out he is 4 1/2 months old. Everybody thinks he is 6 weeks old. He is doing really good. We aren't sure when his next surgery will be, but will know by the end of the week. Hyrum eats every 3 hours day and night. He sleeps good at night (besides the eating) and not much during the day, so no complaints there.

Here is a picture of Hyrum talking on my Cell phone. He was actually gabbing away...it was really cute! My mom was on the other end and she loved it even more!

I try not to think about the negative aspects. There is nothing really I can do either way. The Surgeon is also very concerned for Hyrum and has consulted with other doctor's not only at Primary Children's Medical Center but other specialist across the U.S. I have a few nurses in our ward that work with him specifically and one that works in the NICU. When asked personally who they would choose each one says that this particular doctor is the best. We are confident in him and know that he is studying out the best possible way to perform this surgery. He has struggled in the past with Hyrum and he doesn't just jump in the "pool", but really knows what he is doing and takes full responsibility for his actions. These are two aspects that he has that gives him our full trust with Hyrum.

For these reasons, we are asking each of you to join with us in a day of fasting and prayer this upcoming Sunday, August 5th. We ask you to not only pray for Hyrum, but also for his surgeon that he will be guided in preparing for and performing this surgery.

August 4, 2007

The funny thing with Hyrum is if the surgery is successful and he gets to lose his bag, we are hoping he has my intestinal problems of being more constipated instead of John's problems of being to loose! Never thought I would hope one of my kids to be born with the tendency to be constipated!

I truly believe that God is no respecter of religion when you are praying...it is all about having the right heart and having faith that your prayers will be answered! That is our belief even in our religion. Thank you for calling your temple. I truly believe that the more prayers the better. We have other friends also that are not of our religion that we have invited to pray with us. I think that prayer is one thing that is common among every religion and ties us all together as human beings! So yes, God even hears my prayers and your prayers!

An Email from John's Aunt Kathy. It meant so much to us!

My view on faith and earth life is this: We are here to learn to trust God. Trust that the experiences we have can be for our good. Even when they stink. If we continue to follow and love Him, even when the "going gets tough"--as it is right now for you-- then we are making the Spiritual progress each of us needs to make during out term on earth. It is hard to keep that perspective. We get so caught up in earthly cares and in our own agendas.
When things get really rough--when we have a real chance to turn on Him and get grumpy at what He is doing--that is when we show whether we have learned the lesson of trusting Him or not.

I have done well in some of my tests. And I have failed miserably and gone through a serious process of repentance after some.

I am no judge--only Heavenly Father is--but it seems to me that you two are passing this one incredibly faithfully. However, I don't think "obedience and faith" necessarily gets us what we want. Many of our desires are righteous ones. But I have learned that Heavenly Father is not the Tooth Fairy. D & C 82:10 is for the after life. I always thought it meant this life.

We all want Hyrum to be healthy and normal and live a full life like your other children will.
"But if not" (see Daniel 3:16-18), that does not mean Heavenly Father does not love you or Hyrum or care about your heart. Abinadi was not saved from the flames while Shadrach, Meshach and Abednigo were. I think God loved Abinadi just as much.

The people Alma and Amulek converted were burned with their scriptures. Amulek begged Alma to stop it. Alma replied that those who die will be taken up into God's arms. But He allows bad things to happen to His children so we will know at the judgement bar that He is exercising righteous judgement.

If we are never tested, how can we know who/what we really are?
If your son makes it, hallelujah! If he is taken home, hallelujah! May God be with you and comfort you two. Love, Aunt Kathy

August 21, 2007

If the surgery is unsuccessful, than he will have a poop bag for the rest of his life. He can survive as normal as any...with a poop bag. They are very messy as you literally adhere the bag to his stomach and each time I replace it I have to remove the whole thing. Unfortunately he is very hot, so the bags this summer have not stuck on very well and they fall off. This makes a very big mess. We tend to go through lots of laundry. Also because his food is not fully processed it actually stains worse than regular poop. It is also more runny.
He also can not wear pants. He has to wear overalls because the bag would be in the way of pants and would cause problems.

I have a cousin with crones disease. He has had a bag for a few years. Socially it is difficult because you have no muscle to help with the release of stool or gas. So in a school setting, you would have the noise of gas and stool being made. As a teacher, I'm sure you understand the problem that would hold with the other kids.

But my mom has a neighbor who is 12 years old. She had cancer in her mother's womb. The cancer ate one leg and also most of her lower organs. She also has a bag, she finally was hooked up for her urin to be normal, but she has to wear a diaper because she has no muscle, thus no control. Though she is very self conscious about everything, she also has a great attitude. If Hyrum has his bag for the rest of his life, when he gets older I will get in contact with This young lady in hopes to help him not feel alone.

We are going through with the surgery because 10 % is better than nothing, which is what we have right now. And after the surgery is done we will know one way or another, what he will be facing for the rest of his life.

August 21, 2007

Another excerpt from a letter from Aunt Kathy (I didn't add it all for embarrassment to certain people she mentions)

I know miracles happen. And learning to handle such a severe challenge would make your son an amazingly humble and valiant young man. That, too, is a miracle. Our goal in this life before we came was to MAKE IT BACK HOME TO HEAVENLY FATHER--IN GOOD SPIRITUAL CONDITION. There are all kinds of disabilities. We are praying for Hyrum and his surgeon. It is in god's hands. Bless you all! Love Kathy

August 20, 2007

Hyrum's surgery has been put off.

Hyrum got sick with a cold about the 10th of this month. By this past Thursday (16th), the cold had turned into Bronchitis. Though Hyrum is feeling much better, Dr. Downey does not want to risk him getting more sick. And the ventilators for his airway can further disrupt his healing from the bronchitis. So his surgery has been put off until September 24th. We hope that will give him enough time to get fully recovered and he will be healthy enough at this time to have the surgery.

Thank you all for your prayers and support at this time. We hope everything in your own lives are well.

August 21, 2007

Yes that was one bonus of waiting is that I get some home "down time" before the surgery.

With the odds stacked against him, I think it is better to not add one more thing to the stack! I am glad they are holding off, today is the first day of school...so it was really bad timing! Karl will start preschool next week! He just had his 4th birthday. The haircut came because he and a friend were having "fun" with scissors! Oh well, he's a boy who looks good with a buzz!

I Am VERY excited that school started for my kids. They have gotten into more trouble in the last week than they have all summer.

Hyrum is better, his cough isn't so bad now, but they want to give his airway time to heal before they go and "knock" him up again.

As for the job situation, I am usually very involved, but this round I have not been able to. I know John is stressed, but so am I and it doesn't help either one. So we work toward relieving each others stress as best as we can, he doesn't complain about dinner and I encourage us to take walks. It has really helped him.

Though there is a chance he could die, no the 10 % chance is success of him walking "being carried" away with a new rectum. He could have the bag for the rest of his long life, but trust me...he really doesn't want to, it would be because he has no choice!

September 7, 2007
We have started school. It was nice to have Hyrum's surgery canceled. I had my entire house cleaned and laundry done so as to leave my house in order. So not having to go to surgery I actually got a lot of desired projects done. It lasted for about two days and then reality hit and it was time to clean and do laundry again...but it was great while it lasted. Since then Sarah has been to the Dr 3 times, once for an ear ache, and twice for a sprained wrist. She was trying to do a hand stand (something she has never done) on the neighbor’s trampoline...and she wonders why we don't have one...she of course landed wrong and the next day she was having x-rays. She also has hit her head on the monkey bars as she was swinging; she swung too hard and hit her head on the bar instead of catching it with her hand. Her poor teacher is wondering what's wrong that Sarah has to call me about every other day because this or that hurts and she needs to go to the Dr or needs some Ibuprofen for the pain. I have started to just laugh as there is nothing I can do.

Rachel is in 5th grade and for the first time since she started the adventure of schooling, she has a teacher she loves and relates to. Both John and I hated 5th grade, so we are glad that she will have a great year. She needs the boost of confidence that good teachers seem to be able to give out.
Karl started preschool. The first day he held my hand and was very shy about my leaving. The second day (preschool is MWF) I opened the door for him to get out and he asked if I was coming. I told him that he could go in by himself and I'd pick him up when he was done. He jumps out saying ok bye mom and runs to the door opens it and he hasn't had a problem going since.
Hyrum is up and down with his cold, he seems to not be able to completely recover, but he isn't wheezing anymore, so this is a good sign. He is starting to overall sleep for about 5 hours in one sitting and then 4 hours the next or vise versa either way I'm not as exhausted as I have been for the last many months.
In what little time I have to spare, I deep clean my house or sew. I have a knack for sewing like my mother and my sewing machine can produce the most coveted clothing. John's sister found out she was having a baby girl come Halloween and was very disappointed to find that my baby girl clothes are in Kentucky with my brother David, as David had two boys when I had my two girls and then he had two girls a bit before and after I had Karl, so we have swapped clothes until now as she is having her babies a bit closer together, so we have both had boys and so I divided the clothes back up so she can have hers back, but I still don't have any little girls clothes. So she has begged me to sew her up some frilly dresses!

September 11, 2007

Hyrum will be 6 months in two days. In some ways it seems to have gone so fast. In other ways I feel like I've been doing this forever. And that is just Hyrum.

Hyrum is doing much better, he is back to his typical congestion. I just hope to continue to keep him healthy. His surgery is still set for the 24th of this month. I'll keep you informed.

September 14, 2007

Hyrum has been sick and not sleeping at nights. He comes and goes with his cough. But overall he is doing much better. We have also learned that he sleeps much better when John runs his fan all night long. It is a box fan, I don't think any of the cold air hits Hyrum, so I think it is the noise that he likes. Either way tonight I'm putting on another blanket for myself to keep warm. Because of the lack of sleep I have a horrible sore throat today and my head is very congested. It is really hard when I'm trying to keep Hyrum healthy, but I'm the one sick and the only one home to take care of him.

September 17, 2007

Hyrum gave me the worst night ever the day before. He slept about 1 1/2 hours and was awake every 1/2 hour for his binky and then eating every 2 1/2 hours...it was exhausting...I stayed home from church and slept all day yesterday. I wish you could sleep up a "bank of rest" to make up for the future...For how much sleep I got during pregnancy, you'd think I could stay awake nonstop for a year!!! oh well:(

September 20, 2007
We are doing good. Hyrum is fighting a cough, I'm not sure if it is enough to keep him from surgery. It is planned for Monday. I make the kids wipe with anti-bacterial wipes everytime they come inside, they are not allowed to play with friends, and if they show any signs of illness, I make them were a mask! Everybody loves school including ME!!! (I don't actually go to school, but I love that everybody has something to do!!!!) All three are in gymnastics once a week and the girls take piano lessons once a week.

We are also trying to get ready to build a shed...I am the manuel labor in this deal...I have to level the spot it will go...I will probably be done by next spring which is what John is hoping for...But if it doesn't get done before the snow comes than HE is parking outside of the garage because there isn't enough room for his car.
In some ways I'm looking forward to a week in the hospital...it will give me a break from the other three kids. John was going to go to Virginia for a TCS conference, but we couldn't find a sitter for me to go with him, so we bagged it, since Hyrum wasn't doing very well anyways.

Well off to do more digging!!! HEHEHE

September 22, 2007
Hyrum's surgery is set for Monday morning. I have had to worry about it for a few months and am anxious to have it done...mostly because this is the deciding factor of what we will be up against for the rest of his life. If this surgery is successful than he will lose his colostomy bag in 3 months...if not he will always have his bag. The unknown, though, is very stressful. I think I can handle most anything, I just need to know what it is I'm handling!

September 23, 2007

I am just letting you know that Hyrum is still going into surgery tomorrow (Monday). The past month has flown by, but Hyrum has been pretty sick. For the first few weeks he suffered from Bronchitis and from there just a nasty cough and post nasal drip. He seems to be over the cough for the most part. I personally don't think that he will get any healthier in the next few months. For this past few weeks I have band my kids from playing at any body's house and nobody was allowed in my house that didn't belong. For the last week we have been using hand sanitizer like lotion and masks for anybody that exhibited sick like features.

Though maybe not tomorrow, I will send out an email when I can to let you know how the surgery went.

September 23, 2007

An Email From my Uncle Ted

I wish Hyrum and your family the best as this day of surgery approaches and the risks will be better known after tomorrow. The intestines are so important to well being - especially the immunity system. You are right in the decision that Hyrum has reached a maximum in wellness with the condition of his body. Something needs to change in order for him to get better.

My thoughts will be with you tomorrow.

September 23, 2007

Ted

Thank you for your positive words...I don't think I could have voiced my own opinion any better.
I feel as prepared as I can be for not knowing the outcome. My neighbors are surprised that I am not a basket case, my response is that I don't have the time or the energy to fall apart, besides it doesn't do any body any good. I really am not nervous about tomorrow. I look at tomorrow as an answer to the question "How long will he have a colostomy bag?"...It could be as little as 3 months or the rest of his life. Either way he can and will have a fulfilling life.

He went today to have blood drawn...three different people and 6 pokes later, they finally got it done. His veins have yet to recover from the first 6 weeks of his life, so his veins are very tiny.

I will keep you updated on how it has gone.

Summer of Fun

June 4, 2007

Things have settled down here with Hyrum.

Mom is torturing me. She isn't supposed to pick on me. Getting Ready for Baby Contest. Mom is torturing me. She isn't supposed to pick on me. So I'm going to go to Sleep. My Mom (Jennifer) made my outfit.
For Father's day, John finished scanning in a book for his Grandpa and put it on CD for him. Then we went to dinner at the park with his mother's side of the family as her Father is the only living grandfather between John and I. Then we went to my Dad's to say hello while I feed Hyrum and pumped.
I get to sleep every once in a while. My girls are actually pretty good about letting me nap...mostly because that is the only TV time I let them have, so they would let me nap all day if I would. In fact, sometimes they will come ask if I should go take a nap...just so they can watch TV:)

We had a wonderful time at the Bunker reunion. The water park on Friday was twice the size I was thinking it would be. My oldest daughter (age 10) asked me how many of the people there was she related to. I pointed out that she was related to everybody but the lifeguards. Her jaw hit the ground and her eyes got really big! We have been telling her that her family is very large, but I guess she didn't believe me. The whole thing went by so fast that here it is Monday and I sit in shock that it is over. But the 3-year-olds olds sunburn reminds me that it really did happen!
But now it is time to get ready for Johns (my husband) family reunion for the next few days. I hope that someday we will be able to meet up with each other. My mom tells me that you and John would have a lot in common.
I didn't pass Hyrum around very much at the Family Reunion. My mom has a cousin that helped at the hospital for me. He held Hyrum a lot and I was comfortable with that as he knows Hyrum and his various conditions.
John's reunion was with only his siblings. So it was a very small group. They went camping, so we spent the first night in a very run down motel and the second night in John's sisters empty home. We went to a very nice parade on Wednesday and then drove home to enjoy the Fireworks very close to home.

July 10, 2007
I think the hardest part is being on the sidelines, watching his veins explode from being pricked to much, and having him in so much pain and not knowing why. Or overdosing on medication that he has to have. And yet he has a mild temperament. He attracts people to him just by his happy disposition. And they are amazed that he is so happy after all that he has been through. The most calming thing for me is that by the time he is 4-5 he won't remember the first year of his life other than the pictures that have been taken
He goes in on Monday for a quick test to find the end of his intestine and see how out of place it is, then on the 2nd of August, we go in to schedule his next surgery. I will be glad to get it over with!
Dad Feeding Hyrum. Kids eating Lunch.Hyrum taking a snooze in his pouch!

June 9, 2007

Next week Hyrum has a Baby Contest that I have entered him in. The winner gets a 4-year college scholarship! I doubt I will win, but you never know, can't hurt to try!

I feel like I was a walking mummy!!! Hyrum has been fighting a cold for the last few weeks and finally got bad enough I took him to the dr. He had an ear infection and a red throat. so they gave him a shot of an antibiotic and then put him on an asthma medication to open his airway and then another to clear him up. Hopefully, it will work. Other than this we are enjoying the summer of sleeping in and staying up late. Though yesterday I was so tired that when Hyrum fell asleep at 9 pm I went to bed myself knowing that he would be up at some awful time in the middle of the night...and he slept until 4 am!!!! And then again until 7:30am....so today I feel Great.

June 10, 2007

Hyrum being sick and on medication has its bonuses. This new medication makes him sleepy, so at night I give him a dose of the medication at 8-9pm and he sleeps until 4 am! I have gotten more consecutive sleep in the 3 days than I have since before he was born! I finally feel caught up and do not need to take a nap today! I'm sure it won't last, but I'm enjoying it while I can.

Rachel is 10 and is GREAT with Hyrum. I only have to watch her semi close when she gets frustrated she starts bouncing a bit more than acceptable.

June 11, 2007

When Hyrum is not in the hospital, I usually go to church. There have been a few times like Mother's Day I went to take a little nap before church(1:00 session) and I woke up at 2:00pm. When I first went on Bed rest in January, I called the primary pres. and asked to be released. I knew I wouldn't be going to church from then until he was born and we weren't sure what we were dealing with after he was born, and at the time, John was going to go to India for April and May. But with the problems, we have had with Hyrum his work brought a few people from India to John instead. He still needs to go, but they won't send him until Fall if they do at all. Until school let out, John and I would sit in the overflow of Sacrament meeting and when it was overrun, we did a coin toss to see who would take Hyrum home for the rest of the meetings. With school over, RSV season is also over, so we go to church. It has been nice to be together as a family at church. They finally gave me a calling as a Visiting Teacher Supervisor. They figure I can do this from anywhere, but still help me feel included in the ward. I like it because I still can attend Relief Society. It has been years since I have done that, though I miss the kids in Primary.

June 12, 2007

I'm tired!!! Hyrum is back to not sleeping, so neither am I. He is still stuffy. If he is still stuffy by Thurs or Fri I am taking him back to the Dr. He has a baby Contest on Saturday. My kids are enjoying summer; we go swimming about every other day.

June 17, 2007

Hyrum was entered into a baby contest. He won 2nd place for best costume! After much searching. I finally found some fabric on Friday and got home about 6 pm and started to cut and sew. I finally got the overalls done about midnight. I woke up about 6 am on Saturday and started to sew again and got the hat and shoes done about 9:30....just in time to get ready to go to the Contest. He slept through the whole thing or he would have won other things also! Oh well...It was fun and it is over!

Getting Ready for Baby Contest.

June 18, 2007

Sunday I died!!! He slept pretty well on Saturday and on Sunday nights...that helped. John also did everything with the kids from Friday night until Sunday to let me sew, and recoup!!

I'm not sure what the 1st prize winner was wearing. Hyrum was so hot that I took his outfit off. I'm sure the other baby did the same. I'm not sure how many participated, but there were about 200-300 kids from newborn to 2 years old. Hyrum only competed with those babies that were under 3 months.

We are doing great. Hyrum is still fighting a stuffy nose...I think it might be allergies. Other than this he is doing very good. He gives us scares every once in a while by crying a lot because he isn't getting food fast enough or he doesn't like his stoma(poop) bag to be changed. He is actually a pretty even-tempered little guy for what he has been through. I think he cries less than the rest of my kids, he just really isn't fussy. He is getting used to having three mommies. My girls love to play with him, but I have to remind them that he isn't a doll. Karl loves his brother and will let him lay on the floor or in his chair and just talk to him and goo at him and tell him how much he loves him. Of all my babies that had a sibling that was three, Hyrum has it the best. Karl has been the best big sibling of all my other kids. He has only picked Hyrum up once and that was because they were down in my family room and Hyrum started to cry and he carried him really carefully around the waist up the stairs to me and told me that "the baby was crying, he can't cry" over and over. My girls always carried the "baby" around their neck and shoulder area. So I was pretty impressed. I told Karl he was not allowed to carry Hyrum and that next time he needs to let the baby cry and come find me. And he has ever since. He also minds better than my girls.

June 25, 2007

The weather here is pretty cool today and tomorrow, but for this weekend we are in the 100's! This weekend my family is having a family reunion. It is for my grandmother's brothers and sisters. We are planning for about 200 people to come. My mom and I have been planning this for about 1 year now. Then next week on Monday, Tuesday, and Wednesday we are going about 2 hours north of here to stay in a hotel while John's family camps...this is as close to camping as I am going this year. With Hyrum, it is very hard to go camping. With Hyrum's delicate condition, we don't dare go more than a few hours away. I think this trip with his family will be the farthest from Salt Lake that we will go until next year. We are trying to come up with fun things to do around Salt Lake to help with the kids. We are used to taking at least one major trip every year so this year will be very boring!

July 2, 2007

A Letter to my Uncle:

I am at the sleepless stage. I am told that we prepare for this stage by sleeping in our teenage years. That may have been true through my first child, but somehow the extra sleep didn't make it this far. We had our fourth child this past March 13th. Though he has been a wonderful addition to our family, he has added more stress to both me and my husband (not to mention the extended family that has helped) than all of our other children combined. He has spent a total of 4 1/2 of his 16 weeks in the hospital. He has had 6 surgeries on his intestines, he caught RSV 4 days after he was born and had a collapsed lung due to that. And the best part is he is not allowed to really cry because it causes problems with his intestines. So he sleeps in my room so I can hear him when he starts to wiggle too much. This is when I am grateful for being a light sleeper!

July 4, 2007

I've been out of town since last Wednesday. We had dentist appointments early on Thursday so we went up to my mom's on Wed. Friday and Saturday we had my reunion. On Sunday we went to church with my folks and then came home. And rewashed clothes and left that afternoon for John's family reunion. We got back from that today about 4 and I’ve been sleeping ever since. I've not gone to sleep before 11 since we left. And we have gotten up about 6 am to get going for the day. And of, course I am up with the baby. So I plan on sleeping for a few days!

July 5, 2007

I'm still exhausted. I have slept for most of the day and plan on going back again when the oven is hot enough to put dinner in.

July 9, 2007

I don't ever recall ever being under so much stress as I was those first 6 weeks. Hyrum is doing very well now. He actually smiled while his bag was changed yesterday. I was given as close to sleepless a night as he dishes out Saturday night, so I cleaned the stool off of him and took his bag off, then John (who can't stomach the smell of Hyrum's stool) bathed him while my 10 year old showed him how to apply the bag. John ends up standing in front of the toilet when he smells Hyrum's bag coming off, so I have always done the bag, while his version of helping is giving Hyrum a bath while I get everything ready to put a new bag on. This is a great help, but yesterday morning would be John's first time to apply the bag without me. Rachel has been helping me every time I change the bag since school let out for the summer, therefore I think she knows more about applying the bag than her dad!

In August or September, the Dr. will create his rectum and use a muscle from his bottom for the anal. He will then find the other end of his intestine (they are thinking it is attached to his prostrate) and attach it to his newly made hole. We will use dilators for 3 months to train the muscle to open and close and then they will close up his intestine and see how "things flow." They have revolutionized this particular surgery in the last 20 years. He has a 75% chance that he won't need the bag for the rest of his life. And if he makes it in that 75% chance he has another 75% chance that he won't were a diaper for the rest of his life either. He then at age 3 will have his right ear canal formed in hopes to be able to hear out of that ear. He can already hear out of his left ear. Luckily he has his daddy's hearing and it is off the charts and his potential for his right ear will be off the charts!

July 15, 2007

Hyrum is doing very well and acting like a typical baby. This past weekend, as I've taken out and about, I have been told multiple times what a beautiful little girl I have and how daring I am to take out a newborn. He is small for his age, but not THAT small and if he were a girl, she'd have a bow or something in her hair...more like a pig tail! I find it amazing how people see lots of hair and automatically think it's a girl.

July 30, 2007

Hyrum is still not holding his head up yet. But he seems to be rolling about the same time as Karl. Karl was actually rolling by the time he was 6 months. Being in the hospital so much has slowed down the growth though. He is 4 1/2 months and is about 13 lbs. So he is a very small kid. He is still wearing size 1 diapers and is barely into 3-6 month clothes. It is nice because he is not a heavy kid! I don't feel like I'm lugging a tub of lard around in the form of a baby. He really doesn't have much fat on him. But he doesn't have much intestine to get a lot of nutrients out of his food. I imagine and hope that when he is "all hooked up" that he will gain a lot of weight.
Family Hike to Lake Cecret.

Back to Life

April 26, 2007

The kids have loved the time that they have had with Hyrum. They fight over who holds him more than who isn't getting attention from Mom and Dad. And when we have emotional breakdowns, they blame us for not giving them attention, but when you drill them on their behavior it really boils down to the fact that they don't feel they get enough personal time with Hyrum not mom and dad. It has been nice because I tell them they can't hold Hyrum until something is done like folding laundry, getting completely ready for school, rooms clean. It has helped keep my house very clean without my doing very much. And holding Hyrum is not a "sugary" reward that adds fat to their bones, but even more satisfying. Even Karl will tell you how much he loves "his baby". When I came home yesterday, I was home before Karl came home from his friends house and had Hyrum in bed taking a nap. Karl went right up to his bed and gave Hyrum his new stuffed doggy to play with.

May 2, 2007

Each time I go to the hospital I leave a "to do" list behind of things that need to be done and when I get home my list has grown. This last time it seems very overwhelming. I find myself wandering my house looking at the mess and understand why when I ask my Sarah to clean her room she just sits in the middle of the floor not knowing where to start. Monday I finally folded the clean laundry that was piling on my couch so much that I couldn't find a spot to sit, and yesterday I finally cleaned my front entry room and kitchen. It was 9 pm and Hyrum was a sleep, John was at the store getting sprinkler parts and the kids were watching a movie. By the time John got home that level of my house was spotless. It was nice. Today Hyrum has a doctor appointment for his ear. We will hopefully find out the time frame that they will fix his ear. I still feel like I'm an emotional wreck, but I'm getting better with time.

I finally got Hyrum to nurse for a few days, but he was not sucking hard enough so he was getting very hungry and because of that my milk supply is very low. I hope to pull it up over the next few days, or I'll have to give up the hope of at least giving him breast milk from a bottle until he is 6 months. That was my goal when I resolved myself to the fact that he wouldn't be a nurser.

May 3, 2007

While Hyrum eats from his bottle I answer and check emails. It helps keep me awake. Hyrum appointment, I felt was useless. I didn't learn anything I didn't already know and had to give them a $15 copay for it. They want to monitor him every 6 months to make sure he is reaching his developmental growth milestones. Than at age three they can fix his ear.

As for missing paychecks, I can't think about them. I am worrying about to many things already. With Hyrum's last hospital trip, I turned the bills all over to John. I have always done this chore. But I can not handle watching our savings account drop like it is. We work very hard to put that money aside. But this is why we do it. John's stress is so high that he can't even think enough to go search for a new job. And right now the thought of taking another job that would probably force us to move makes my stress level climb and right now I think my stress level would be so high thinking about everything that it makes me want to just stay in bed and try to sleep the stress away. But we both know that doesn't solve anything, so I convince my brain to push it out of my mind. The only thing I could do to help solve the issue is to go get a job. And that cause more stress. So I tell myself, I'm doing all I can do. And John will have to take care of the rest. We have always believed that not only are we best friends, but partners for forever in our marriage and by working together we help each other and this makes the burden semi-bearable. I'm doing what I have to and John is doing what he has to.
I have considered, after my hospital experience, getting my nursing degree. My only hangup is I can't stand needles. I'm not sure I could handle drawing blood or putting in an IV into someone. I can't even watch it happen. So I'm not sure I could actually do it. I was talking to a nurse about it and she said that in class they practice and learn how to do IV's and stuff on each other. I don't even let new nurses poke me let alone let someone learn how to on me. So here I am not pursuing it.

May 3, 2007

We are doing very good. Hyrum is getting into some pretty good night sleeping habits. Tuesday early morning he refused to nurse, so after trying for about 45 min. I finally gave him a bottle. I pumped the milk and was shocked to discover how little I got. At that point various clues came together and I realized that he wasn't sucking hard enough to get much milk and thus he diminished my milk supply from pumping about 6oz each time to pumping about 1 1/2 oz each time. We are looking into different formulas as I can't bottle feed and pump. I figure I'll be dry within the week. We will just mix the formula with my frozen milk to help make it last longer. I would love to nurse, but not at his growth expense. Since switching back to the bottle he has jumped from eating about 1 1/2 oz to eating 3 oz now.
May 3, 2007

Just to let you know that Hyrum is doing GREAT! Rachel, Sarah, and Karl love having Mom and Hyrum home from the hospital. We still have lots of Dr. appointments, but at least we get to come home after each appointment.

May 6, 2007

This was from my cousin Merrita. It was so beautifully written that I thought to post it as is:

Bless your Heart, Jennifer! What an amazing journey you've begun! So many miracles and so many more to come! I was very stunned to hear the news when grandma told me, my heart just ached as I couldn't imagine my baby being born with the same difficulties. But looking at the joy on your face in the one beautiful picture really proved to me that it was all part of the blessing and that you weren't phased by any of it! You are amazing, sweetie! What an example. So glad to hear that he is doing so much better, bless his little soul! So looking forward to seeing all of you soon, doing my best to finagle army schedules, my husbands own surgeries, and finances, because I feel so strongly about being there! I know it will all work out. Well, take care and God Bless! We will be in touch!

Love,

Justin and Merrita

FROM BLOG

Merrita said...

What a blessing and a miracle! As soon as I heard the challenges that had been presented to J and family, I was overcome with sympathy and worry. And at the same time, as I sit here four-months pregnant with my own miracle, I worry bout the fear of something similar happening to us... but as I read this page and saw the pictures, and especially of the one with J smiling- true joy. Complete and utter Joy! How? Because she's still holding that special miracle! What an example you are to me J! What a beautiful baby! I know that through the Lord and the miracle of faith and prayer, I can take on what ever challenge may lie infront of us, and the little miracles are worth every heartache and work and sleepless nights it takes to get them! God Bless you all!

May 7, 2007

My Response to Merrita,
I had checked my email and the blog attached to the pictures just before I went to bed. Big mistake!! I was so elated about your beautiful words and I had such anticipation about responding that I could hardly sleep. I usually answer mail while giving Hyrum his bottle. So don't be to surprised by the hour I write.

I don't think anybody can be completely prepared to walk a path like this. We have found the hardest part is watching your helpless infant be in so much pain that, at one point we literally begged the doctor to increase his pain medication. But here he is sleep/eating in my arms. He is healthy, safe, content. He makes the world around him right. When he has been through so much, yet his nature is positive and one of a strong warrior, how can I complain about my own hardships when he has been through more in 6 weeks than I have in my 32 years of life. I understand what my husband says when I am delivering each of our babies, that the hardest part for him is to stand by and know he had a part in making me suffer and there's nothing he can do but hold my hand. These past weeks, this is all we have done is sit and watch our child, who doesn't understand what is happening to himself, fight for his life knowing all we can do is sit and hold his hand. Sometimes his pain was so high, that the medical staff suggests not even touching him so as not to cause more pain. But then after a day or two and his pain level is under control and you can hold him again, he just snuggles in knowing that he feels safe again. He has truly brought friends and family together.
May 9, 2007

I am totally exhausted. Rachel asked me what I wanted for Mother's Day, I told her "to be able to sleep all day!" She replys "Mom we have church on Sunday" So I won't get that gift. Though I bought my own gift on Monday. I was at costco getting milk and bought myself a power juicer! It juices all fruits and veggies. I made my own spaggetti sauce yesterday. My kitchen looks like a veggie bomb went off. Tomorrow is clean up day.

This summer we would like to do some "mini trips" weekend trips to explore Utah. Something we (mostly me and kids) have never done. We will do this up to the time for Hyrum's next planned surgery that takes place between 4-6 months. which is July to September. So anything we do will be in June. My kids are wanting to go see cousins in South Dakota and Kentucky, but we will see. We would actually need a steady income to pay for that kind of trip.
We bought Karl his own scooter and a replacement seat for his bike yesterday. He was so excited that he would not come inside. John asked Sarah to take him inside and Karl got so mad that using his head he hit her in the cheek. She has a nasty goose egg now. His head is as hard as a bat and he doesn't feel anything.

May 15, 2007

He is starting to smile and one day I will remember to have my camera around while he is smiling.

My kids love having him in our home, he has an extra 2 mommy's that tote him around. Sarah(7 years old) is now grounded from holding him because she was trying to help him do a head stand. And then she was helping him dance on her lap. Karl (3) has to give him a hug every morning. But doesn't care from there. Unless he is crying and then he tells us to "save the baby".