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".

Back Again for Surgery #4, 5, 6, 7

Overall, this was the most stressful time in Hyrum's life....including mine really...

Sunday, I am in church with our three older kids. John is at home with Hyrum. John knows that I'm in church (obviously) so when my phone rings with caller ID identifying him; I know something is wrong otherwise he would text me. I step out into the hall to take his call for him to start right in for me to "come home right now, something is wrong with Hyrum". I hung up immediately, run back into my meetings grab my things and the kids and head back out the door. John meets me at the garage door with Hyrum in his infant seat wrapped in a towel. While I drove Hyrum to the hospital, John called ahead to let them know I was coming and to be prepared. He then called his parents who met him at the hospital and took our three kids home so that John could stay with me and Hyrum. The following email(s) explain.

April 17, 2007 (Tuesday)

Hyrum was admitted back to the hospital Sunday Afternooon. He had what is called a prolapse (or in english) his intestine came out of his Stoma (pooping intestinal hole). He went into surgery that evening to put it back in him and was stitched closed to hold until monday. On Monday he was put into surgery again to have the doctor stitch the intestines together on the inside in hopes to hold it together and not have this happen again. They also redid the stoma and mucus fiscula and moved it up the intestine to give less pull to come out. This surgery was about 3 hours long. Hyrum was having trouble breathing so they didn't give him his full dose of pain medication. He woke up screaming and he prolapsed out of his mucus fiscula (lower intestine hole). They took him back into surgery again to tack the lower intestine to the outer lining of his abdomen with a button (I haven't actually seen this yet but this is how the doctor described it and drew on his picture for me). After receiving 3 doses of morphine, his body could not take the effects and he went into shock and quit breathing. This happened about midnight Monday night, Tuesday morning. He was stabilized and moved to ICU. He did not stabilize through the night and is still in ICU.

After receiving two full nights of no sleep. My wonderful sister-in-law Kristy came to the hospital and sent me home.

I am told that he is stabilizing more this afternoon while I am gone. Tomorrow if he continues to do well he will be allowed to eat. With the midnight episode I am not sure when he will be sent home, but he is on a different pain medication that does better with his system.

Jennifer's mom is not able to help as she has a nasty cold running through her house and I will not allow anybody who lives with anybody that is sick come and help at the house or hospital. So she arranges other people to come and give relief so I can sleep. If Hyrum is moved back to the
regular infant unit they have a place for me to sleep as long as the "co-sleeper" doesn't move in in the middle of the night or need a night light to sleep.(both happened on Sunday night and the beginning of Monday night).

Again thanks for your prayers and support. Sorry this is quick, but I just wanted to let all know that didn't already know how upside down life can change in a minute of time.

Wednesday morning, Hyrum woke up Throwing Up bile. After many tests, it was decided that Hyrum's intestine had somehow gotten kinked during his last surgery. In hopes to find this kink, Hyrum was cut from the top of his stomach to the bottom. In doing so, they also hoped to find the end of his intestine as this was still an unknown at this point. What they found was one of his muscles around his intestines had herniated and his intestine had gotten stuck inside. What they did not find was the end of his intestines as his groin area was still very swollen.

April 19, 2007 (Thursday)

Hyrum was still not doing very well. I cut and paste this next part from a dear friend of mine (and also my Relief Society President at the time). She has a blog for her photography, and posted the next words and pictures. She came on Thursday to take pictures.

From Amy Springer’s Blog

Answered Prayers
I pray often. Sometimes out loud, sometimes a whisper prayer. At times, a silent prayer. And today, all of the above. Sometimes, it is a simple prayer in my heart. When I have a deep concern for someone I find myself alternating between being focussed and distracted--going through a gammut of feelings and emotions: hope, concern, gratitude, joy, relief, sadness, love--then I must accomplish a task and for a moment my silent prayer must wait.

Today I could not stop thinking about this handsome little baby. At five weeks old, and he has spent all but two weeks in the hospital. For the past couple of days he has been the focus of my prayers, along with many others who are truly rallying around his family. He is the son of a friend in the neighborhood, and I have been humbled by just how many people want to reach out and help in some way. I know he is in the thoughts and prayers of many.

So tonight, I made arrangements to go and visit baby H. & his mom at the hospital--camera in tow (of course). I felt that photographing him today was one of the best things I could do (second to praying for him) . . . here are a few photos I'd like to share with his mother's permission:

{proof that prayers are answered: baby H. resting peacefully tonight.}
{I am so inspired by this determined little guy- barely older than a month and has already undergone 6 or 7 surgeries. He keeps on going, despite setbacks and emergency operations and more surgeries in the future, he still keeps on going.}
{I think I know where H. gets a good dose of his resillience from . . . his mama. As I looked through the photos from tonight, her happy countenance really struck me. She still finds joy, even through all she has been through this week alone (her baby had 4 surgeries this week!) J- your example means a great deal to me.}
To baby H:

{Hold on kiddo. You'll get through this. You'll be stronger than ever. Miracles do happen, and they have happened for you. Miracles will continue to happen. Prayers have been answered, and they have been answered for you. We pray for you.}
* Today was another day that reminded me why I am a portrait photographer-there is so much love and human emotion out there, just waiting to be captured through the lens and into the heart.

Please say a little prayer for baby H.

Thank you Amy Springer!

As I went through my notes, I realized that this next part is not printed anywhere, but needs to be printed. How do I put this into words. We were told Sunday that the Dr.'s were worried about Hyrum. He seemed to have lost his will to survive. And they were not sure that he would make it home. We called both sets of Grandparents and gave our son his Name and Blessing thru the Holy Melchizedek Priesthood. John gave our son the most beautiful blessing...and the result of this blessing is shown in this next email.

April 25, 2007 (Wednesday)

Well today is Wednesday. Yesterday I decided that I had to make a choice. I could stay in the hospital until Hyrum breastfead(which could take forever) or I could give him a bottle and go home sooner. So, I took the shorter route and gave him a bottle. Today we are home! He took to the bottle and drank very heartly. Shortly after his first bottle, the surgeon came in and was told what happened. He laughed so hard. He was glad that he was not the only person that Hyrum was giving the run around.

So this morning the nurse took his picc line out of his arm. We got the needed supplies for his stoma to go home with. And then we got the lovely yellow paper saying WE ARE FREE TO GO HOME.

The kids are very excited and are already fighting over Hyrum. It is wonderful. Thank you for all the wonderful prayers. They have made a wonderful difference in our son.

So Sunday he received a Blessing, Monday he started showing signs of wanting to eat, Tuesday we gave Hyrum a bottle, and Wednesday we came home. Nothing anyone can tell me will tell me that it was not that Blessing given by his Father that put Hyrum home three days later!

2 Short Blissful Weeks!

There will be a little overlapping between blogs, but it was better than having one really huge blog entry.

April 1 (Sunday)

Hyrum was still in the hospital for one reason...this being the Dr's felt he wasn't eating enough so they were feeding him through an NG tube...or in english...a tube that went down his nose to his stomach. So he would eat what he would and we would put the rest that the Dr's felt he needed into his stomach through the tube. He had been working with a Speech Therapist who helps figure out why kids won't eat and "they didn't want him to be pushed. They would give him what he wanted without tiring him out. We don't want eating to be a bad experience." So after a week he was still only eating about 10-20ml of the 60 they felt he should have been eating at each setting. On Friday, the team of Dr's decided that he was the most full term and healthiest of the NICU babies but that he wasn't quite ready to go home. So they sent us to the regular Infant ward, here the Speech Therapist encouraged us to "push him, to wake him up and try to keep him awake during the feeding until he is so tired you'd think he was dead. Get him to eat as much as you can." She then spoke with the new Dr over Hyrum and was told that if he would eat 50% of his food by mouth for a 24 hour period with no problems he could go home and take the NG tube with him. I think Hyrum heard the Dr because that very feeding he was eating 75-80% of his food by mouth. He did this all day Saturday. The Intern was so shocked she insisted that he be watched until at least Monday morning. I was not happy about this and so she and I talked it over and compromised and she let me go Sunday at 8pm. This giving her another 12 hours to watch and make sure he didn't get to tired from the unexpected food intake.

The kids were also able to see him for the first time on Saturday as the regular Infant ward has no restrictions on siblings visiting. They were very excited to see their brother. Karl upon them leaving started to cry because he thought they were coming to take his baby and mommy home. With the move to the infant ward they had a chair that folded out to a "bed" for a parent to sleep on. So I moved in with Hyrum to take over his care, as I learned quickly that the nurses did nothing, but the basics of their jobs. When other babies were crying they would check and make sure they were not hurting themselves and then leave them in their bed crying. They would feed him and check his vitals on routine, but nothing else unless the monitors beeped. I found it fascinating how fast, though, that they can slid on their gliding chairs down the hallway in a race with one another. It was quite entertaining. Enough that you can see why I never left Hyrum's bedside unless he was asleep aside from the fact that there were so many times that the nurses didn't practice cleanliness / sanitation.

But...
He is now HOME!!!! He will still have many outpatient visits to make and Dr's visits for them to keep track of his growth...but I DON'T CARE...because HE IS HOME!!!!

We have had many blessings and miracles through out this ordeal. For instance, if he had not gotten sick he would have been at home when it was discovered that his surgery was incorrect. We also learned from a cat scan on his head that, though he had no ear canal, he did have an ear drum, and had been told he would probably not be able to hear because of bones in his ears that had fused. A few days later they then did what is called a BEAR test, this tests whether there is a potential of hearing. And to everyones astonishment, his potential or ability of hearing is higher than the average baby's hearing. So we will be meeting with an ENT(ears, nose, throat) Dr to decide what needs to be done for Hyrum. The virus that he caught is a mild form of RSV, but he only had one symptoms which was his respiratory was down and caused his right lung to collapse. There was other kids there with this same virus, who's symptoms were much worse...and they are still in the NICU. He got over the worst of the virus within a week after his second surgery, normally they last weeks...for Hyrum it was about 10 days. Everything else will be monitored with Dr visits.

We appreciate all of your love and concern and especially your prayers.

Hyrum was able to enjoy seeing cousins for Easter, though he did not get out of the car.

April 4 (Wednesday)

I left this in, as it shows what a crazy life I had. Hyrum had many Dr appointments. This was a very typical month.

For your information...appointments coming up for hyrum...and one for Jennifer:)

Dr. Smith---April 11(Wednesday) 10:30am Tri city Medical Clinic

Dr. Downey---April19(Thursday) 1:00pm Utah Valley Medical Center

Dr Hall--Me--April 20(Friday) 8:45 am Layton

Dr. Park--May 2(Wednesday) 10:30 am ENT PCMC 1st Floor Clinic B

Dr. Mart---May 4(Friday) 8:40 am cardiology PCMC 1st Floor Check-in at
outpatient

Dr. Beirs---May 24 (Thursday) 10 am Ophthamology PCMC 3rd Floor Rm
6350 arrive early

Dr. Brockmeyer---July 12 (Thursday) 11:20 am Neurosurgery PCMC 1st
Floor Clinic B, Check in Desk #5

Genetics--Dr. Steven Bleyl--801-581-8943--See in 4-6 Months, call in May

April 5 (Thursday)

I didn't realize before he was born that he may not be able to wear certain clothing. Because of his stoma bag, he can't wear any pants, only one pieces and overalls until the final surgery, between 6-8 months from now.

TIRED!! He sleeps at night, but not as much as I was hoping he would. The hospital woke him up every 3 hours. So now at home he is up every 3-4 hours at night. Sometimes he goes back to sleep, other times he doesn't. But at least he sleeps more than Karl did. We are taking him to the doctor today because he still won't latch on for nursing. I hate pumping and it takes so much time! We are pretty much on the same schedule, so when he eats I know it is time to pump.
Afternoons are fussy times!

April 11 (Wednesday)

Well, rest is in the eye of the beholder. My older kids keep me going pretty hard. Luckily Rachel and Sarah have learned how to make their own breakfast. They like pancakes for breakfast and get tired of cold cereal(I don't blame them), so I have bought them an add water kind of mix and they have pancakes for breakfast. They actually do pretty well. I have a doctor appointment at least once a week right now. Like today I left about 10 am and picked kids up from school headed back to a store I needed milk from and got home about 4:00 pm....No rest today. Luckily my RS is bringing in dinner, so I'll say a quick hi and go nap while my kids are spread through out the cul de sac playing.

John loves his job. He really loves who he works with, they have been great with Hyrum in the hospital. He worked very little in those 3 weeks, though he is making up for it now. Because they are a start up company, they run out of money often. They have a horrible sales team that can't sell anything. He is actually looking at a few other companies that will allow him to work from home and just travel once a month, then we wouldn't have to move unless we want to. He doesn't really want to switch, but we need money to pay the bills. His company is trying to get us caught up, but we aren't holding our breath.

April 13 (Friday)

Tired...I'm very tired. But there are worse things out there than being tired. We are still trying to breastfeed. It is a very slow process. His tongue is still in the way. The kids are adjusting to
my exhaustion and lack of involvement. They still fight over who's turn it is to hold Hyrum. As for summer, I love the time to sleep in without feeling guilty over not getting my kids off to school. Having a newborn is hard mostly because of my lack of energy. My body requires so much undisruptive sleep, that when I don't get it I'm toast! But summer time will still be a busy time, I have many things I want to do, need to do, and many things that won't necessarily be
fun, but are required that I do (aka surgeries for Hyrum). The things for Hyrum will be hard for my older kids to be around so they will spend a lot of time with Grandma, I just hope it all works out. do you have plans for summer? What do you do with your kids to keep them from just watching TV 24 hours a day?...That is what my kids want to do.

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!