Friday, December 30, 2011

Seminar for Nurses

Owen was in the hospital from Dec 19th to Dec 22nd last week. Then again in the hospital from Dec 27th and hopefully being discharged today the 30th.
Owen has been in the hospital almost every single month this year. Since we are here so often, I have learned many things about nurses.
First I want to say, I love nurses! They work so hard and their schedules are very demanding. They often have an overwhelming amount of tasks to do on any given day. I try to be very forgiving when they are not on their "A game" because I understand they have a lot to do. They are amazing :)

That being said, there are certain things that nurses do that drive me crazy, especially night nurses.
I would love to teach a seminar about what its like to be in the hospital and ask them to be respecful of certain things. I think they simply don't think about what they do before they do it. We have had several nurses that come in at midnight and talk like they are at a concert on a friday night. They say something like, "Hi, my name is . . . and I will be Owen's nurse tonight." Which is a perfectly acceptable thing to say. However, at midnight you have just got your child to sleep because your roommate is a pretty loud teenager and you have just fallen asleep minutes before she says this. I do not like being woken up by a nurse when nothing is wrong. Why wouldn't they just let the parent rest if there wasn't anything wrong? I may not understand all the ins and outs of nursing but I know that when a mommy is sleeping and a baby is sleeping, you don't wake either.

I understand that they need to do their job. However, I think they sometimes forget that their place of work is our place of healing and rest. A hospital room needs to be a place where the patient can get the rest they need for healing. There are always circumstances that prevent that and some cannot be helped. A roommate could be seriously sick and need medical attention, you yourself could need a medical team in the middle of the night. However, if patients are sleeping soundly and are medically stable, why must you wake them up to tell them your name?

In a children's hospital rest is even harder to come by. Children do not understand why you need to take their temperature at night. I know if Owen wakes up while they take his temperature, he screams bloody murder like they are poking him with a needle. So, a parent can only sleep when their baby sleeps. Sometimes their baby is sleeping through all the kaos in the room and they cannot sleep. All the more reason not to wake a parent if they are sleeping and their baby is sound asleep.
This is what happened while we were in the hospital. I was having such a hard time sleeping because our roommate was a 5 year old that didn't sleep at night. They had the light on all night and she screamed loudly every 2minutes. Owen was sleeping soundly. I had just fallen asleep amidst all the noise and crazyness. A nurse comes in, taps me on the shoulder, and introduces herself. I couldn't sleep the rest of the night. Therefore, the next day with Owen and all the things they needed to do, I was such a tired mommy.

Another big thing to me is closing the door. If there are two patients in a room and they both have parents in the room with them, there is no need to keep the door open at night. It is especially frustrating when you lay down on your chair bed for the night, finally get comfortable, and a nurse comes in and doesn't close the door on her way out. On top of that, she proceeds to stand right outside the door and talk about what she did the night before (however inappropriate it may be). This does not make for a happy mommy. Our rommates mom and I were both talking about how the nurses need to learn how to shut the door when they leave.

This is just a friendly reminder to all you nurses out there :) We love you all very much and think you do great things daily!
Just some advice to keep patients rested and happy

Have any of you parents had similar experience? I would love to hear about them

The Chairs

Since Owen has been in the hospital, I have been without a computer. I lost my computer charger during the last admission. Thankfully, the hospital found my charger!

So, I thought I would share a few pics of the boys and their chairs lol

When I walked into the kitchen, I saw the boys in their chairs facing each other. It was like they were having a discussion. They were just sitting there all calm and so cute!

When I started taking pictures, they started getting crazy. They were moving the chairs all around and sitting in them for just a second, then moving them again.

I had to add a couple of cutie pie pictures!

Monday, December 26, 2011

Memory Monday - A NICU Christmas!

Christmas at C-4
Owen's first Christmas tree!

Sunday, December 25, 2011

Merry Christmas!

We pray you and your family have a wonderful Christmas whether you are in the hospital with your little one or home with your whole family.

God Bless you in the New Year!

Thursday, December 22, 2011

The Boys with Santa!

Here it is. . .

Ok, ok. . . I guess Santa is not their favorite hehe

Tuesday, December 20, 2011

A Day of Gift Bags and Hospital Stays

On monday our family had a pretty crazy busy day.
Sunday night was filled with worry for Owen. We ended up in the ER because Owen had a fever that started at about 7pm. It was 102 when I checked it. Because he has a broviac, any fever must be closely monitored. If it goes above 101 he has to have a blood culture done to rule out a blood infection. If he is acting ok he can go home after the culture is drawn until the results come back. It takes 72hours for a culture to be officially negative.
So, they drew a blood culture sunday night and let him go home because his temp went down with tylenol and he was acting ok.

Monday I had planned a packing party to put together Owen's Miracle bags with ladies from the Church I attend. Because Owen was acting ok the night before, I decided it was ok to leave him with Heath while I put this packing party together. I knew I wouldn't be gone too long and Heath could get ahold of me if something wasn't right.

Our packing party went great! We were able to put 60 NICU gift bags together and 50 Christmas prensents in just under 2hours! I was so happy to have help. Putting together the gift bags by myself is such a huge task. It was great to have the help and now we are ready to deliver!

After I got home from the party, I found Owen taking a nap. Heath said that he was sleeping for about an hour but started off by falling asleep in his high chair. That had me a little worried. The last time he fell asleep in his high chair, he had a major blood infection. I quickly called Oakland GI department to discuss how Owen is doing. His doctor thought it would be best, because we live so far away, if we just come in so they can monitor him.

Now Owen is in the hospital. They say the earliest day he could go home would beThursday morning if they have not found the source of the temperature. It could very well be that he just has a virus he needs to get over. However, because of the broviac and his history with blood infections, we like to be cautious.
So far nothing has come back positive. They have taken cultures of his urine to check for a UTI, taken blood cultures both out of his broviac and another site (luckily they were able to get the blood with only 1 needle poke!), and they are now checking to see if he has pneumonia. He has had a cough for about a month and they want to rule it out. The lingering cough is worrying them.

Pray for Owen as he goes through all these tests. He is getting older and he is not liking all these new people that want to touch him and poke him.

Monday, December 19, 2011

Memory Monday - Almost 3 pounds

October 13th, 2009
Owen looks so precious in these pictures. This was the day we found out that Owen's bowel perforated and that poop in the abdominal cavity created a pretty bad e-coli infection. He needed surgery but they had to wait for his condition to get better. The infection needed to be treated before he could have surgery. They were worried that the first surgery created strictures all throughout his intestine which would mean removing more intestine.
Hard to believe all of that was happening when these pictures were taken, right?

Friday, December 16, 2011

Stanford's Second Opinion

On Monday Owen had an appointment at Stanford to get a second opinion about Owen having the S.T.E.P. procedure done. If you don't know, the S.T.E.P. is a procedure done to attempt to lengthen the intestine. Our doctors have been on the fence about it for about a year now. One doctor thinks he absolutely needs it. Another doctor thinks he needs it but is not completely certain about it. So, we headed to Stanford for another opinion.

The doctor we saw in Stanford was actually Owen's doctors attending when she was still learning.
We were very impressed with our experience at Stanford. The GI doctor had a lot of knowledge. You could tell he had been a GI doctor for many many years. He does not like the S.T.E.P. like many other GI docs do these days. He thinks it is a good procedure but he agrees that it is not a cure-all type of surgery and other steps need to be taken before leaping into surgery.

After reviewing Owen's history and discussing it with us, he concluded that Owen has many other options before surgery is a neccessary one. Of course we were super excited to hear this news! However, we were more excited about the rest of the meeting. The meeting was about 2.5hours of pure information and help :) He gave us many options to help improve Owen's care.

First, Owen is on a couple medications to help with his bacterial overgrowth in his intestine. (Owen has parts of bowel that are dilated which creates places in the bowel that don't move very fast. This creates "pools", for lack of a better word, of food or formula. This is where bacteria feed and multiply . Bacteria creates gas which worsens the movement in the bowel.) The GI doc believes we should change Owen's medications to better control the bacteria that is growing in his intestine. He suggested that we do an endoscopy which would give them a chance to test the bacteria that is growing and find a better medication.
This was very exciting to me because I can tell when Owen needs his medication to control the bacteria. His belly gets extremely bloated, he gets gassy, he poops more often and thows up more. Hopefully, if we can get him on the right medication, this will not happen as much and we will be able to increase his feedings and maybe soon go to some bollus feeds.

Second, the doctor suggested that we change Owen's formula. He is currently on Neocate infant. This formula has done well for Owen. However, the Neocate junior has a prebiotic in it which promotes healthy bacteria growth. This could also help with his gas, soupy poop, and throwing up. I am pretty excited about this!

Third, currently Owen is on 3 in 1 TPN which means that  the TPN and Lipids are pre-mixed by a pharmicist in one bag. He believes that having the TPN and lipids in one bag can create problems. He said that mixing TPN is hard to do when lipids are clouding the look of the TPN. So, we are now doing 2 in 1 TPN with lipids in a separate bag. He said that taking the lipids out has also shown to keep the line patent longer. This is great for Owen, but it does mean he will have yet another pump at bed time.

He had some other suggestions but we stuck with changing those three things first. If you change too much at once you won't know what is helping and what's not. Stay tuned to see how all these suggestions help Owen :)

Tuesday, December 13, 2011

My Kids Are Cute!

I just wanted to share a few pictures of my kids just being kids :)

Monday, December 12, 2011

Memory Monday - Beating NEC

3 weeks after Owen's surgery which removed 65% of his small intestine, Owen was taken off the vent and he was now breathing with CPAP!

Our little miracle had beat the odds.
After days and days of giving him 48hours to live, our little boy was finally "out of the woods".

Also, since Owen was off the vent, we were aloud to hold him! And we were holding him all the time

Sunday, December 11, 2011


where my thoughts are today. . .

With all that Owen goes through, this song speaks to me. The strength does not come from me . . . only my Lord and Savior

I can do all things through Christ who strengthens me.
Philipians 4:13

Nothing is in our hands. We must look to the Lord

Thursday, December 8, 2011

Christmas Tradition

In case you haven't figured it out yet, I LOVE Christmas!
I love everything about Christmas
I love getting to say to everyone I see, "Merry CHRISTmas!"
The Savior is born
Our society as a whole has decided to celebrate the coming of our Lord and Savior.
Whats not to love about that?

I also love all the traditions, the family time, the merriment and love.

I am also obsessed with ornaments!
Many people choose to coordinate their tree, have a theme, or some sort of order. My favorite kind of decorated tree is a tree that shows what the family has done, seen, been through.
I love collecting ornaments through the years to show what your family is all about.

So, one tradition I have is to get at least one ornament every year.
Here is our 2011 ornament

Don't you just love it?!?
There is a place at our craft fair in town that sells personalized ornaments. We get one, two, three. . . or so each year. Last year we got 3. This year we stuck to one.
Through the years I know this could get a little overwhelming so we probably won't have a family one done every year but soon I hope the boys will be able to pick their own!

Merry Christmas Everyone!
Spread the Joy

Pony Tails?

I know, I know - I have boys and should never have a post that is titled "Pony Tails" right?

But, it's my moms fault

I have been debating about getting Isaiah's hair cut for a while now. I really want it cut because it is so hard to make it look nice. If is fuzzy and sticks up if you don't wash it every day. Since I don't bathe Isaiah every day, we have had to get creative. I haven't cut it yet because Heath likes Isaiah's hair a lot. So, I have put it off.

Well, my mom had enough!
Here is the result of her crazyness lol

So, his first hair cut will be next week with a girl that used to babysit me when I was little!

Monday, December 5, 2011

Memory Monday - Wedding Day

Owen attended his first wedding while in the NICU
He was the best man!
Isn't he handsome

Who's wedding you ask?
His Parents!

On December 6th, 2009 (Owen's due date) we were married in the Oakland Children's Hospital

We originally wanted to wait until Owen was born to have him in the wedding. When he came early we were not concerned with a wedding anymore. However, after 4months in the NICU, with no discharge date in site, we were ready to tie the knot!
We asked one of our favorite neonatologists if it would be possible to bring a preacher in to marry us by Owen's bedside. We knew our family wouldn't be able to be there because we were the only ones aloud to see Owen in the NICU but we wanted our baby with us when we got married. Luckily, Owen was doing so well that the doc said he could spend 30 minutes in the chapel. Straight there and straight back with a nurse present. We were the only ones aloud to touch him during that time, besides the nurses. They also limited witnesses to our parents only. We were just so excited that they let us do all this!
The nurses were so excited! They got Owen all ready for the wedding - even placed a "Just Married" sign on Owen's bassinet. The social worker even got involved - she booked the chapel, got us a photographer, and set everything up in only 4 days! They were able to set everything up so that we could get married on Owen's due date.


p.s. sorry this memory monday was a little late

Friday, December 2, 2011

I Wanna Drive

"Hey, I know where Grandma keeps the keys!"
(in the front pocket of her purse hanging on the dining room chair)

"Let's GO!"
(as he pushes the alarm button lol)