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...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.
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
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
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!
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)
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.
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.
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