Saturday, March 31, 2012

Sunshine

Today was a good day. Here's why:

1. Hank has had a really good last 24 hours
(must be from Leslie and Brian's help)



2. Drew was a much happier child than he has been the last week. The move to Salt Lake has been hard on him.


This is Drew outside the hospital playing in a little garden. Fun place.

3. I got to meet Stephanie Nielson, writer of the blog NieNie Dialogues. You can visit her blog here. She was at Deseret Book doing a book signing. I didn't take a picture though.
4. The weather was awesome. I love the sun!

About Hank.


He's doing really well.
Still on antibiotics.
His dopamine is down to a really low dose, but his blood pressures are tolerating it really well.
Had his umbilical catheters removed today. A PICC line was placed instead along with an arterial line.
Oxygen sats have been good, in the 90's. So good in fact, they are going to try and wean his oxygen down tonight. He has been on 100% oxygen since his surgery.
May increase his heart rate. The pacer is set to 125, but most preemies usually have a heart rate between 150 and 180. This is in discussion with Hank's cardiologists and neonatologists.
X-rays are still good.




Goals:
Get the oxygen weaned.
Grow, grow, grow!

Overall, we are happy.




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- Posted using BlogPress from my iPhone




Yesterday, when I went to see Hank in the morning, he was back on the dreaded oscillator ventilator. Yuck. His CRP was about the same. Poor kid was definitely agitated.





Last night though, my sister Leslie and her husband Brian came by to see him. They had a good visit and Hank was feeling much better. He was back on a conventional ventilator and was tolerating that really well. Thank heavens. The doctors also removed his cerebral monitor, so now we get to actually see a little more of Henry's head.




Ups and downs. Just something we will have to get used to.


Posted from my iPad

Friday, March 30, 2012

Thursday, March 29, 2012

Seven Days

Can’t believe we have had our 2nd baby boy for 7 days now.  It’s a little different not having him home with us, but we know he is in the best place right now.  I have to admit, it made me pretty sad to watch all the moms go home from the hospital with their little carseats, filled with their little babies.  It’s definitely a different experience.

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So what’s new with Hank?  He is doing pretty good.  Stable for sure.

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  • Hank has lots of drugs.  Antibiotics still, though his CRP has gone way down (12.8 two days ago, 1.8 today).  He still is having some sort of inflammatory process and sepsis, but he is much better. 
  • Definitely still full of fluids, though the lasix they have been giving him has really helped him loose some of that.  He looks much less swollen, although, you can still see it in his face. 

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  • The milrinone drip that was started seems to have really helped Hank stabilize.   This is a drug that is used to treat heart failure.  
  • The umbilical lines that Henry has been getting his IVs through will be taken out soon and replaced with a PICC line. 
  • We are learning that there is some component of pulmonary hypertension going on with Henry, but we are unsure why.  It is making the whole right side of his heart pretty wimpy.  Once the pulmonary hypertension gets resolved, the right ventricle of the heart should improve. 
  • Because Hank’s coags were off, he has been receiving different blood products.  None today.  He did get some cryo-precipitate yesterday, which is just concentrated clotting factors.
  • X-rays still good.  Ultrasound of head today, good. 

Today was a good day.  Who knows what tomorrow will be, but we are happy.   

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Henry:  7 days

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Delicious

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best.spaghetti.ever

Wednesday, March 28, 2012

Update: Picture Extravaganza

I don't have too much to update today, just pictures!



Hank, just after he was born. 


Cute curly blond hair.




Such a small little boy. 







Surgery site.  See the chest tube. 


Hank's home.  It's called an open warmer.  Hopefully he can move from here soon. 


Reminder to keep Henry's oxygen levels in a range to prevent any eye damage. 



The oscillator. 


 The pacemaker.  


Feet like Drew. 


Poor little guy. 


Look at all these syringe pumps for medications. 


I miss this face.  It reminds me of home. 

Drew is Two

Happy Happy Birthday to my baby boy Drew. Unfortunately, I missed posting on Drew’s actual birthday, and haven’t had a chance to catch up until now. What a horrible mom.
Mr. Drew is a busy busy boy. Some of his favorite things to do are:

1.  Play outside
2.  Chase the kitties
3.  Sleep in his bed
4.  Take bubble baths
5.  Play with his friends at "school"
 
Drew loves the alphabet and numbers.  He can count and recognize all the numbers up to 20.  He knows the all the letters and the sounds they make.  He loves to say colors and shapes also. 

Some of Drew's accomplishments:

1.  Speaks in sentences (sometimes)
2.  Great singer.  (Some favorite songs:  twinkle twinkle, mary had a little lamb, wheels on the bus, and many more) 
3.  Can recognize when spelled out the words, Drew, Mom, and Dad.   


(This picture was taken at primary children's.  I don't even have a good picture to post of Drew.  Man, I feel like a failure)


Drew is such a good boy and we are so glad that he's around.  It's been a good two years. 

Monday, March 26, 2012

3rd Day

I'm slowly learning that this is definitely a slow process that is going to take a lot of patience. Little things everyday.



( this picture is right after Henry was born, what a tiny guy)

Today when I visited Hank, he looked a bit better to me. He sure is a puffy little boy though. His nurse was letting him wiggle a bit to try and work down some of his edema. It was fun to see him move around.

He is still in an open warmer bed and can't be held. He really hasn't been cleaned as not to stress him too much. He really needs a bath, but I guess that can wait.

Henry has definitely got some sort of infectious process going on. His blood cultures are still not growing anything though. He is on day 2 of his new antibiotics, and hopefully they will take care of that sooner than later.

Thank heavens, the cardiothoracic surgeons removed his chest tube today and Hank looks so much more comfortable. That's a positive.

Because Henry hasn't been keeping his oxygen sats up, the neonatologists switched him from an oscillator type ventillator to a regular ventilator. He really seems to like that much better and has had better numbers. He does have chest x-rays twice a day to make sure his lungs are not getting over-ventilated.

No blood products today. Yipee!

His heart ECHO today showed that his ductus has closed, but he does have a small hole in his heart that they are watching. They aren't sure if it is a PFO or not. The right side of his heart (the side that pumps to the lungs) seems to have to be working a bit harder and seems enlarged. This is something we will be watching.

Status overall seems to be fairly stable. Maybe a little tiny bit improved.

My favorite things today:

1. Henry squeezing my finger
2. Henry's curly blond hair
3. An ECHO tech that took care of Henry the whole time he was in my belly came and gave him a visit. What a lucky kid! He sure is loved.


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48 hours

Day 2 was sure a crazy day. Here is a list of things Hank experienced.

1. Had an ultrasound of his brain. This was to check for bleeding because Henry was not super responsive and a bit "floppy" in his muscle tone. Good news... All normal.

2. Started two new antibiotics and stopped one. This is because his CRP (c-reactive protein) and white blood count were high. The docs thought that this could be a possible reason he was not having high oxygen saturation levels. Hopefully his new antibiotics (zosyn, vancomycin, gentamicin) will help.

3. Recieved more fresh frozen plasma via his IV. Still trying to get those blood coags to normalize. Hopefully soon!

4. Started total parenteral nutrition (TPN). This is a way for Hank to get the nutrition he needs to grow since he is not taking any thing though his mouth, yet. He gets fats, proteins, and sugars this way (plus a few extras). This will help him to grow so he can get his internal pacemaker.

5. Had a heart ECHO. This showed what we thought. Heart structure and function are good. Does have a patent foramen ovale (PFO) which is common in premies. He also has a patent ductus arteriosus. Usually this can close on its own, but if not, drugs can be used or a procedure to close it with a clamp. The good thing is, he is not shunting blood in the wrong direction which would cause fluid buildup in Hank's lungs.

6. Still has his chest tube in from his little surgery. This is draining any fluid left in there. The fluid is about dried in the the tube, so that will probably come out day 3. Yipee!

7. Got some steroids through his IV. Solu-cortef.

8. Got really wiggly this afternoon. Mom and dad are super pleased about that.

9. Has a double chin and fat fingers. (Just like his Mom has had while she's been on steroids). This fluid will be reabsorbed later and peed out. Pretty common in sick premies.

10. Heart is still being paced at 125 beats per minute. It was sure fun to see his heart in the ECHO beating that fast. I really am not use to that at all.

11. Started bili lights. This suntan should help him to get rid of excess bilirubin and prevent jaundice. He gets to wear awesome shades and now mom and dad really can't see his face at all. Poor guy!





Busy day for a little tiny kid. We're just trucking along. Little changes everyday.

Posted from my iPad

Sunday, March 25, 2012

First 24

Since it is hard to keep everyone updated on Henry on an individual basis, I will try and do a daily update on my blog. I may miss a day or two here and there though, so forgive me.

Obviously, Henry is in the NICU at Primary Childrens Hospital. He was born on Friday, March 23, the same day as his older brother, but under much different circumstances.




I (liz) was down in SLC for one of my weekly fetal ECHOs to check Hank's heart and body for any excess fluids. The cardiologists thought they saw a little more fluid than usual, so they sent me up to maternal fetal diagnostics at University Hospital to have a full ultrasound. There was fluid found, but not a lot. The bigger concern was Henry's size. They thought he hadn't been growing to well. So, after discussion amongst many doctors and some risk assessment, they decided to take Hank that day. I was 30 weeks along.

They scheduled my C-section for 9:30 that night and Steve made his way to Salt Lake. The c-section was a piece of cake and Henry was born around 10:15 pm, 45 minutes later than Drew's birth time. They took Hank away though the window, even before I got to see him. Steve saw him though. He cried a little, and was a wiggler. Once they stabilized him in the NICU at the U of U, they transfered him to Primary Childrens NICU.

He did pretty well over night. I was told he was "vigorous" and fairly active. He was put on a ventilator and given surfactant to help develop his young lungs. Antibiotics were also started, pretty standard. His heart rate was pretty slow, in the 50s and 60s, so they decided to wait on any surgery for pacemaker placement.

The next morning, things had changed a bit. Henry was doing okay with the ventilator. He was also on room air and doing well. His platelets were low and his blood clotting factors were off, so he recieved quite a bit of platelets through his IV. He also got some other products called fresh frozen plasma.
They decided that since his heart rate hadn't changed, they wanted to go ahead and do the surgery for his external pacemaker. Henry is too small for the internal pacemaker, so for the external pacemaker they do a small incision place the pacer wires on the heart and close it up. And that they did.

After the surgery, Henry has had a rough go. They gave him a paralyzing agent for the surgery, along with sedatives that he had been getting to keep him comfortable, and he was not super responsive for the whole rest of the day. A bit worrisome for me. Also, his breathing got worse and his oxygen levels went down. He had been on an oscillator respirator which esentially gives him fast, tini tiny breaths, almost like panting. This is very gentle on his lungs, but his body is constantly pulsating with the rate of the oscillator. They turned this up to 100% oxygen which did not help to much. They also added nitrous oxide to try and help. They decided to raise his blood pressure with a drug called dopamine and that did seem to help some.

When we checked on him that night around 10:30, his coloring was much better. He sure is one sick little guy. Tough though.

Sorry about the book. I will try not to write so much next time. I have pictures on my camera bur haven't uploaded them yet. I will post them when I do.


Posted from my iPad

Saturday, March 24, 2012

Happy happy birthday birthday

Happy birthday number two for my baby boy Drew today. Look at the great present he got. Although I don't know how much he will appreciate it yet.
Welcome baby Henry. 2 pounds 9 ounces. Almost 15 inches. Doing okay for now.
I guess a birthday is just one more thing Drew will have to share with his baby brother.

Sunday, March 4, 2012

a while

I guess I haven’t posted on here in a little while, but I did have a few pictures of what Drew has been up to as of late.  It’s surprising how much he changes from day to day as he gets closer to his second birthday. 

Watch this video of Drew doing one of his favorite things (singing).  This was about a month and a half ago, so we have improved a bit. 

Henry update:

Henry is doing about the same as last time I posted.  His little heart is still so slow, but he hasn’t had any poor outcomes from it so far.   We have lasted this way for about 8 weeks now and hope to continue for 4 to 6 more at least.  He is definitely growing and is normal size for his gestation which is a great sign for him.  What a tough kid. 

I did get to go to Madison, Wisconsin and meet with some doctors and equipment that tested Henry’s heart further.  They haven’t got the official results, though most of the results they did have showed us what we already knew.  There were a few things that Henry showed that had been positive in other babies like ours, so that was a relief. 

Back to Drew:

Here are a few pictures to enjoy. 

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