alphabet soup

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watch and enjoy!

9 weeks

Hank is 9 weeks old.

Look at him compared to his first week of life!

How he’s changed: 

• Now:  5 pounds 6 ounces.   Then:  2 pounds 9 ounces  (gain:  2 pounds 13 ounces)
• Now:  Loves his paci.  Then:  Had 3 tubes in his mouth and down his throat. 
• Now:  on CPAP – breaths on his own.  Then:  Was on a ventilator (breathing tube).
• Now:  on condensed feeds of human milk (means he gets his feeds over 1.5 hours, they will decreased the time).  Then:  had nutrition through his IV.
• Now:  Lives in a crib and can keep his temperature regular on his own.  Then:  Had a giraffe bed for easy access but it was still heated. 
• Now:  Soils his diaper like a regular kid (gross).  Then:  Didn’t have a dirty diaper (minus pee) for 2 weeks.
• Now:  Loves to be held.  Then:  Could hardly tolerate touch.
• Now:  Opens his eyes to see the world (or just his little bed space).  Then:  Slept and rested all the time. 

What a happy, almost regular baby!

   

break time

   I love to sit up at the hospital with Hank, but it can be very tedious at times.  While we’re there, we can’t do normal “baby things” with him because of the limitations of the pacer wires, respiratory support, and feeding tubes.  It can get frustrating to wait and wait all the time, so we try to take breaks and do things as a family (minus one). 

Last  Saturday we took Drew to the zoo.  My mom ended up getting a season pass, so we try to take advantage of it. 

Drew likes to see the animals, probably the elephants the most (baby geese were a close second).  The train though is the best part of the zoo.  He would ride it over and over if he could. 

(You couldn’t tell he loved the train in this picture.  He really did, he was just sad that it was leaving without mama.)

Primary’s has lots and lots of donations that they receive from volunteers, and companies.  So, they get lots of opportunities and they share them with the families of children who live there (like us). 

The Heber Valley Railroad provided free tickets to A Day Out With Thomas to families.  We took advantage of those for sure, though we missed Steve but had fun with Grandma Suzie (my mom). 

It was a fun little ride through the Heber Valley (it lasted about 45 minutes).  They don’t call it the Heber Creeper for nothing. 

      

Drew had a lot of fun, but more fun after the “scary conductor” left (some character from Thomas the Train).  They even gave us passes to come back again.  I’m sure Drew would love Daddy to take him back again. 

good morning

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downtown

Our favorite walk these days!








Posted from my iPad

Queen Anyone?

 

Drew has taught himself how to turn on music on my iPhone and my iPad.  He does this, then usually plays a game while his favorite songs are playing.  One of his new favorites is Somebody to Love by Queen.  He sings the intro over and over.  So cute.  Sorry about the poor video quality, Steve caught Drew singing himself to sleep and recorded it on his phone. 

grateful

Look at my smiley, happy two year old. 

Don’t know what I’d do without him.  love. 

8 weeks old

Baby Hank (as Drew calls him) is 8 weeks old.  We haven’t even reached my due date yet.  Weird. 

      

What is going on with him

• Is on CPAP again!  Not fun, except instead of nasal prongs and a mask, he is trying out the new delivery method.  A nasal canula.  Much more tolerable.  Has been doing pretty good on this and the added pressure is giving him the extra support his lungs need.

 

• Still on antibiotics.  The neonatologists decided to keep him on after the pneumonia scare.  He is completing a 10 day course and is on day 8.  His white blood count has been left shifted, which means his body is making more white blood cells and there are immature cells.  This usually indicates he is fighting an infection.  Though, his CRP (measures inflammation) is not elevated at all.  His antibiotics are vancomycin and gentamicin. 
• Was started on two diuretics.  These are drugs that help remove excess fluid from his body (lungs, etc).  These were started by the neonatologists because they are not sure if Hank’s lungs are congested because of his heart (even though the cardiologists say no, that the heart function is good).   He gets spironolactone and chlorothiazide. 
• Chest x-rays have been terrible, until the last one.  Though the doctors say, the x-rays seem to be bothering them more than him.  His last one was quite a bit better.  Not really sure if it is from the diuretic or antibiotic since they were started at the same time. 
• Gets to have an antifungal again.  His platelets have been low, and a lot of times, fungal infections cause this to happen.  Clinically, he doesn’t see to have a fungal infection, but I guess it’s better to be safe than sorry.  He gets fluconazole for 7 days. 
• Had a heart ECHO today.  It was done to see if he was having any heart failure.  They did the workup because Hank’s liver has moved down, and he had some abnormal labs that measure his liver function.  Liver problems can indicate heart failure by showing the heart cannot pump the blood adequately through the tissues.  Blood gets backed up in the liver and causes it to move lower,  into the abdominal cavity.  I haven’t seen the results from this yet. 
• Is still on continuous feeds.  He gets these through a nasogastric (NG) tube.  They removed his feeding tube that went through his mouth and it has been great for him.  He is starting to suck on his paci quite a bit more.  It’s nice that the tube in his mouth was removed because it will help prevent him from developing an oral aversion (a lot of these little babies develop that).  

• Is ready to try to eat from a bottle, but can’t!  Super frustrating.  It would be hard for him to swallow with the high flow oxygen.  Imagine feeling like water hoses are blowing water up your nose and trying to eat at the same time.  Not super pleasant.  As soon as he can eat, we will be close to going home.  Definitely not going to be anytime soon. 
• Weighs 2150 grams.  4 pounds 13 ounces.  Gains weight like a champ. 

paci

swim lessons

 

the pacemaker

After talking so much about Hank’s pacemaker (and since it’s really what’s keeping him going), and in light of a recent incident, I thought I would talk about it. 

This is what Hank’s pacemaker looks like.  The top number represents the heart rate (Hank’s is 125 beats per minute), and the bottom two numbers are the milliamps needed for the atria and the ventricles to contract.  Henry’s 2nd and 3rd numbers are currently set at 3 and 7.    These numbers change on a daily basis (cardiology comes and adjusts them depending on how Hank’s EKG looks when they turn it down).  That is the part I don’t understand. 

 picture taken from :  http://www.icu-usa.com/tour/procedures/pacemaker.htm

From here,  Hank’s blue pacer wires go into two little plastic boxes.  The blue box has two leads that eventually go to the atrium of the heart.  The white box goes to the ventricle of the heart.  The little knobs on the sides tighten the wires in the boxes.  If they are loosened, the wires will come out, and Hank won’t have an adequate heart beat.   

From here, the wires go through Hank’s skin and into his heart (which is only a little over 1 inch long).

We love Henry’s pacemaker.  It’s what is keeping him with us.  The cardiologists love it too, and that’s why they are so worried that his wires will come loose.  Once a week, the cardiology team checks the wires (Hank has a spare in his chest) to make sure they are still working.  They checked it today. 

Later, when Steve (poor Steve) was visiting, he noticed Hank’s heart rate was less than 125, which it obviously shouldn’t be.   He let the nurse know, and it was discovered that one of the wires was not connected in the little blue box.  It definitely caused Hank some discomfort.  His color changed (to dusky) and his ability to oxygenate his body decreased.  Not super good.

So what happened?  It was decided that the lead didn’t get tightened enough when cardiology.  Thank heavens they didn’t blame us and take away our holding privileges. 

Since Hank is new territory, there is a definite learning curve.  It is now required that the nurses chart that they have checked the wires every shift at least.  Whew.  

mother’s day

We had a pretty good mother’s day Sunday.  Not too much happened that I can remember.  Just a regular Sunday.  One of our “primary nurses”, Jenny helped Henry make me a mother’s day card. 

 

(Please ignore the horrible picture of me, another “primary nurse” Lisa took it with my phone)

*Primary nurses are nurses that get priority to care for a baby they have signed up for.  Once they sign up, they are a primary nurse until the baby goes home or they decide not to be anymore.  This provides consistency for the baby’s care and is nice for the parents.  You can tell we have been in the hospital for a while – we have 8 nurses.

smile

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bedtime

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fingers and toes

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swim

Primary’s has some really nice programs for family’s of children who are living  in their hospital.  One thing they do is give family’s a membership to the Jewish Community Center just up the road from the hospital.  They have a really nice gym, and also an indoor and outdoor pool.  I decided to put Drew in swimming lessons there while we are here. 
We had a first lesson at the beginning of this week.  I went with Drew, and let me tell you, it was not fun.  Maybe these pictures are proof why Drew would rather go swimming with his Dad.  (Steve would be so embarrassed if he knew I was posting these pictures, just don’t mention it to him). 

        
(These pictures are taken at the pool at my grandma’s complex)

excitement

Well, we didn’t have too much news this last week, until last night. 

All last week, we just worked on growing, and physical therapy.  This is how we spent most our time . 

Laying in bed

 

Starting to wake up and look around a lot more. 

 

Since Hank could only be held 3 times a week (that is something that is constantly being debated), the nurses try to come up with creative ways to keep him entertained.

Hank’s nurses are his advocates for holding and have been putting pressure on cardiology to let us hold more.  Cardiology is worried that Hank’s temporary pacer wires will get pulled out.  You can see where they go into his skin. 

The neonatology team and nurses were successful today, and now we can hold as much as we want during weekdays.  How nice for Henry.  We hope that is something they won’t change their minds about. 

So last night, right before Steve was headed up to see Henry, we got a call from his nurse.  She said that Hank had been having to work to breath a little more than normal.  They had ordered stat labs and an x-ray.  His white count came back okay, and his CRP was only mildly elevated.  But, his x-ray showed a hazy lung on the right.  They thought he had a right sided pneumonia. 

So, what that means, is he gets to have a sepsis workup.  This includes a lumbar puncture, urine culture, blood cultures, and antibiotics.  Yipee.  So, he had an IV placed, had his labs drawn, his lumbar puncture done, and his urine collected.  He did so good for all this and really didn’t cry too much.  His such a tough little boy.  They also started him on vancomycin and gentamicin again.  Poor kid had a rough night with everyone poking at him. 

When I showed up this morning, Hank’s practitioner said that his x-ray today looked much better and they were pretty sure he didn’t have pneumonia after all.  His cultures from his sepsis workup have been negative so far.  They also did an RSV panel, which came back negative as well.  If everything stays stable, they will only keep him on the antibiotics for 48 hours.  Let’s hope for that (then they can remove his IV).  

Hank also had a heart ECHO today that came back looking the same as before.  So he is stable in that area.  We are glad he’s doing well and are just waiting (patiently as possible) for him to grow more and wean from his oxygen. 

Hank’s original cardiologist, Dr. Jason Su came by to visit today and has been visiting regularly.  He is the cardiologist that followed me from the very beginning when Hank was still cooking.  It’s nice to see faces around that we know and trust.  It’s great for Hank to have so many people cheering for him.   Dr. Su has always been weary when telling us how this pregnancy would turn out from the beginning, but has been surprised and happy with the results.  So have we.

7 weeks old (37 weeks gestation)