red

I think my baby boy Hank is a redhead?







Let's hope he stays that way.



Posted from my iPad

Wow! 5 weeks.

Where has the time gone?  I can’t believe we have been here (at Primary Children’s) for 5 weeks.  Crazy. 

Hank’s news:

• Now weighs 1580 grams = 3 pounds and 7 ounces.  What a champ!
• After 3 weeks on CPAP, has switched to high flow nasal cannula again.  Let’s hope he stays on it this time!  My tough boy tolerated the CPAP well and didn’t need any scheduled medications to keep him calm. 
• His CRP is down again to a normal level (0.7).  So, antibiotics are done.  This means no more intravenous medications at the moment. 
• Poor guy had to have a viral panel done (it was negative-whew) because his neighbor tested positive.  Yay for no viral illness. 
• His second eye exam came out good.  He will have them every 2 weeks until they are fully developed. 
• Heart ECHO showed no change from last time. 
• Head ultrasound had a few changes and will be followed again next week.  Thank heavens Hank acts appropriately for his age and size.  I still worry though.
• Pacemaker still works great. 

What has Drew been up to?  Not too much. 

There is a fun museum at Temple Square that he really enjoys. 

He loves to walk outside.  He has discovered bugs recently. 

 

He has had a few play dates, which is good for him.  He also has a scheduled play date every Monday with my cousin Heather’s girls.  (Thanks Heather for meeting up with us every week)

Today Hank went from this…

  

 

to this. 

He has done really well on the nasal cannula so far.  Hopefully he continues.  He also seems to enjoy having a little more freedom of movement. 

Happy note:  Hank snuggled with me today for about an hour.  He tolerated it well, so we hope there will be more in the near future.  It’s good for him and good for Mom and Dad. 

Grandma Mary

Mary Joanne (Conely) DeMar Decker (1932 - 2012)

LOGAN - Mary Joanne Conely DeMar Decker, 79, of Logan, died peacefully Friday, April 13, 2012, after a long period of declining health.
She was born in St. Paul, Minn., to Richard Albert and Marjorie Vincent Conely on Nov. 14, 1932. As a child, she and her family moved to Salt Lake City, where she graduated from East High School and then briefly attended Utah State University. She later attended the University of Utah.
She married William McAdam DeMar. They had four children, then divorced. Later in life she married Webster Decker. The couple lived in Salt Lake City and Hebgen Lake, Mont. They later moved to Bunkerville, Nev.
Mary worked to support her family in various bookkeeping positions. She later ran her own real estate company, Ye Old Pioneer Real Estate Company.
She was a member of The Church of Jesus Christ of Latter-day Saints. She was a leader in the Nevada Republican Women's and the Daughters of Utah Pioneers organizations. She was active in many community endeavors and civic committees in Bunkerville. She was a strong supporter of animal protection agencies, and took many a stray dog - and a few cats too - into her fold.
Mary was preceded in death by her parents, her husband and one sister, Rhoda Bown. She is survived by her sisters Jane Watson of Arizona and Betty Anderson of Salt Lake City; three daughters, Suzie (Mike) Stones of Logan, Renee (Ron) Freeze of Eagle Mountain and Teena (Kevin) Bridges of Salt Lake City; one son, Bill DeMar of Logan; three stepsons, Rod (Christine) Decker of Salt Lake City, Craig (Alison) Decker of Mesa, Ariz., and James Weston Decker of West Valley City, Utah; two stepdaughters, Jeanne (Robert) Griffiths of Shanghai, China, and Marci Decker of Boulder, Colo.; 21 grandchildren and numerous great-grandchildren.
The family would like to thank Dr. Jeffrey Strong for his compassionate care, and the staff of the Terrace Grove Assisted Living Center for their amazing love and support for Mary during the past few years.
A gathering for friends and family will be held at 2:30 p.m. April 29, 2012, at the Terrace Grove, 345 N. 200 West in Logan, Utah.
In lieu of flowers, the family suggests donations in honor of Mary be made to the Cache Humane Society, 2370 W. 200 North, Logan, Utah, 84321.
Arrangements are by Allen-Hall Mortuary in Logan.
Condolences may be expressed online at www.allenmortuaries.net.

Published in Logan Herald Journal from April 21 to May 5, 2012

Bath Night

All shiny and clean.














Hank gained an ounce today. Finally some progress.

Posted from my iPad

a month (4 weeks)

Steve is in Anaheim with his robotics team this week, so I have been spending my time juggling both my kids.  Luckily, I have babysitters for the youngest (expensive babysitters), and my mom is here in Salt Lake with us, so between the two of use, we are good.

 

Henry is doing pretty good.  He weighs 1410 grams, 3 pounds and 1 ounce.  Yay for not being in the two’s anymore.  He has been getting a tour of the NICU, they changed his bed space again.  We don’t mind though.

 

Some other things…

• He is still on vancomycin and gentamicin, only 5 more days of those.  His CRP has been coming down. 
• Continuing CPAP, which is miserable.  He doesn’t seem to mind too much though.  We have been weaning it down. 
• Eye exam was good.  He still has a ways to go before he is fully developed, but doesn’t look like there are problems. 

I have found out that Henry likes to sleep with his hands behind his head.  He does it every single night I go check on him.  Funny baby. 

I have been able to help with Hank’s “cares” more.  Diaper changes, mouth cleanings, pulse checks.  It’s nice to feel like I’m doing something other than just pumping all day.   I did get to hold him again the other night while his nurse changed his bedding, but just for a second. 

Can’t wait till he gets to go home!

Made by hand

- Posted using BlogPress from my iPhone

relaxing

battery operated

Finally a nurse decided to decorate Hank’s board. 

“He keeps going and going”.  

Perfect. 

same old

So we copied my sister Lori and got Drew the same bike that she got for her 2 year old. 

Drew really seems to like it, except he doesn’t know how to ride it.  At least while we are here at my grandma’s condo, he can ride it in the hallways which are carpeted.  It’s a good place to learn. 

Henry is doing pretty good.  The nurse made footprints and handprints for me.  I’m glad we got them while he is still really small.  Speaking of size, Hank now weighs 1300 grams, at least today he does.  That is the same as 2 pounds and 13 ounces, so he is up 4 ounces from his birth weight.  Hopefully he keeps trending up and fast (to get to 8 or 9 pounds is going to take forever)!

 

He spends most of his day lounging around with his lovely CPAP.  He tolerates it pretty well though.  On Saturday, they pulled his PICC line, so he has to get his antibiotics through a peripheral IV.  The antibiotics are the only thing he gets intravenously.   He has graduated to full feeds that are fortified.  This means he gets more calories than are actually in the milk.  He is no longer on TPN, yipee.  All of his other medications, he takes orally (caffeine, hydrocortisone, and multivitamins).  His progress has definitely been positive. 

Isn’t it fun to actually see his face? 

Lounging around.

    

Drew spends his time going to the museum, parks, zoo, and walks downtown.  He is adjusting a little bit more to being away from home, but mostly he just acts like a two year old.  He does enjoy it when we go home for a day and get to see cousins and pets.  Now I just need to find him a friend to play with in Salt Lake.   Any takers?

When Steve is in town, we spend our time taking turns at the hospital and playing with Drew.  We really don’t spend the whole day at the hospital because it’s better for Hank to be in his little house keeping warm, sleeping, and growing.  As soon as he is ready, we will be there more, hopefully getting to hold him and snuggle a bit.  For now, we are very good at just observing!

three weeks

Henry is three weeks old now, but you wouldn’t know it based on his weight.  He still weighs basically the same as when he was born.  Funny.  

 

He has been doing pretty good, minus his infection going on.  The plan is to continue with his vancomycin and gentamicin, then on Monday pull his PICC line.  Hopefully, that will take care of his issue. 

Hank is still on the CPAP and really hates it.  Every little while, he will just cry for a minute to complain, then go back to sleep.  Funny little kid.  Hopefully it doesn’t have to last too long.  It really is helping him though. 

It’s fun to watch him start doing things like normal little babies, i.e. peeing on nurses, sucking a paci, and just complaining.  He definitely has his own little personality. 

changes

Yesterday, Henry had a rough day.  His CRP had jumped to 8.5.  This made his neonatologist think he had some sort of infection brewing.  This is because while we were on the antibiotics, his CRP was good, but a few days after the antibiotics were stopped it jumped.  Dang.  So, it was determined that he needed a sepsis workup.  This includes peripheral and central blood cultures, urine culture and urinalysis, and cerebrospinal fluid culture (retrieved through a spinal tap or lumbar puncture).  Dang again. 

Vancomycin and gentamicin, two of his original antibiotics were restarted. 

So, Hank was a sport and tolerated all that stuff really well.  Then, later in the afternoon, his oxygen saturation kept dropping.  Poor kid.  So, Hank got turned over onto his belly (this apparently helps with breathing) and his oxygen was increased from 5 liters to 6.  Yucky. 

Later, when discussed with the cardiothoracic surgeon, it was determined that he shouldn’t be on his belly.  Whoops.

His milrinone (the drug that increases the contractions of the heart) was turned off, with a cardiac ECHO scheduled for the next day.

Today when I went in, I was happy to hear that Hank’s CRP had dropped down to 4.7.  Maybe the antibiotics helped?  He was doing much better with his breathing as well.  There was discussion about starting him on CPAP instead of oxygen to give Hank more support with breathing and that was eventually done on Wednesday.  He seems to tolerate it well, but poor thing has practically his entire face covered.  He doesn’t like it at all, but it’s good for him. 

(Can you see him in there?)

A couple good things:

1.  FiO2 is in the low 30’s.

2.  Hank is tolerating feeds well and will be on full feeds in the next few days.  This means no more nutrition through his IV.  Goody. 

growth

 

Since Henry is pretty stable lately, I think I am going to decrease my blog posts to once or twice a week.  We will see how things go. 

Here’s Henry’s latest:

• Now weighs 1290 grams (he started at 1150).  This is not water weight.  Yay for Hank!  Goal:  4000 grams for pacemaker placement.
• Still on high flow oxygen (about 5 liters). 
• Feeds are being increased daily and he really tolerates the feeds well.
• Milrinone off.  Follow up ECHO on Wednesday. 
• Arterial line out.
• Not on too many drugs.  Hydrocortisone being tapered off.  Diflucan for 2 more days (antifungal – used just in case).  Caffeine.  Morphine and versed as needed for agitation (usually gets 1 or 2 doses of each per day). 
• Happy baby who is content to sleep in his warm house.

Tonight, I got to hold Hank for the first time.  His nurse Jenny and I gave him a bath and changed his bedding.  He was awake the whole time and really didn’t get too upset.  What a sweet baby. 

happy easter

 

Both of my boys had a happy Easter this year.  Even though Hank was in his bed at the NICU, he wasn’t forgotten by the Easter bunny.  There are many generous and kind people. 

 

Above is Hank’s Easter basket that we were surprised to see when we arrived in the morning.  Below is Hank feeling excited that the Easter bunny stopped by for a visit. 

 

We ended up going to Logan for the day to spend Easter with family.  It was a nice little getaway.  (Funny how going home can feel like a vacation).  Before we left though, the Easter bunny stopped at my Grandma’s house and left some goodies for Drew.  He was pretty excited and spent the morning playing and eating candy. 

 

 

I really haven’t decorated eggs for a long time, so we did a few in Logan at my parent’s house.  Drew really wasn’t interested, so I did the eggs, which was pretty obvious.  Not too much creativity involved. 

Happy Easter.  We will be excited to have Hank home for his Easter #2. 

egg hunts and updates

Of course, Hank didn’t get to do an egg hunt this year, but hopefully next.  Instead he stayed in his lovely isolet and rested. 

 

Henry is doing pretty good.  Fentanyl drip is off.  He is still getting morphine and versed as needed though.  Ventilator off, oxygen by high flow nasal canula on.  Hopefully he continues to tolerate and do well on that and won’t have to go on CPAP.  He has been tolerating his feeds, and those have been increased as well. 

We definitely missed Hank during the egg hunt, but he can catch it next year. 

We decided to buy tickets for the Thanksgiving Point Easter celebration.  It was our first time there, and really, we probably won’t go back.   Totally not worth the money.  I was not impressed by Thanksgiving Point at all.  

They had a big egg hunt for the kids, and they divided it up by age group.  Drew’s group was 0 to 3.    Each kid was allowed 10 eggs, but it’s not like they double checked.  Many got much more that that. 

 

Here is Drew waiting for the okay to start grabbing eggs.

 

As you can see, the eggs really weren’t hidden, just spread out everywhere.  This was the beginning, waiting to grab eggs.  As you can see, Drew is a happy camper (sarcasm).  This was meltdown #1, joyful. 

Drew had fun picking up eggs until…

meltdown #2.  Doesn’t Steve look thrilled?  Ha. 

Drew did get to play some games while we were there and go on this train ride.  This was so fun for Drew that when he got off, there was meltdown #3.   He wanted to do it again. 

(I love the picture above.  Doesn’t Steve look like he is enjoying the train ride?)