A message from Great Aunt Michel

Congratulations to David, Dana and Henry!!!

We all know how hard it is for you to take Henry home and not to be able to show the little guy off.  And we definitely know how social both of you are.  So - don't feel like you are being harsh when you are asking for no visitors.  YOU ARE BEING HENRYS ADVOCATE and that is EXACTLY what your job as a parent is.  All of us that are parents definitely understand, and those that aren't know you are doing what is best for your son. 

We have no doubt at his young age, (if he could talk), he would want to see all of us.  Ha! However that wouldn't be at the best interest of his health, and as parents you have to guide his decisions.  

The GREAT AUNT and Infection Control Nurse in me are so proud of you both for doing what is so hard and keeping him "away from the bugs" as much as you can.  You cant prevent everything, but you are giving it 100%!  Your love and support have gotten him where he deserves to be - HOME!

Prayers will definitely continue, but if you need ANYTHING don't hesitate to call.

We love you lots and are soooooooo happy for the three of you to be home together.

Great Uncle Jim and Great Aunt Michel

Let's Hear it for the Boy!

In case you were needing something extra to be thankful for this Thanksgiving weekend...just under the buzzer...Henry is HOME!  That's right...home!  Hooray!  We are so excited for David & Dana to finally have their son home, where he belongs. 

Now, we just need to make sure he stays there.  Unfortunately, there's not a lot that most of us are able to do to help out with that.  A lot of Henry's health depends on Henry & what's going on inside his body.  But, there is one thing all of us that love David, Dana, & Henry so much need to remember: right now, the best way to express our love, support, etc. is NOT necessarily through our physical presence.  Henry's immune system is very fragile and they just cannot take any risks of him being exposed to anything that could land him back in the hospital.  Especially with this being prime flu, cold, general sickness season, we all need to be aware that things that those of us with well developed immune systems are able to fight off...Henry can't.  Not only that, but having visitors, being passed around, etc. puts stress on his system in general and can throw him out of wack.  I know this may sound harsh, but please realize that this is all being said in the best interest of Henry's health. 

Just in case the tempation to "just stop by" tries to take ahold of you, here is what you'll find on the door:

Okay, so after that total downer, let's go back to the beginning.  Henry is HOME!  Hooray!  Hooray!  Praise! Praise!  Celebrate!  Celebrate! 

As always, all the prayers, support, and love you all have shown to David, Dana, and Henry are so appreciated.  While this is such a huge milestone & very worthy of excitement, please do keep them in your thoughts & prayers as there is still a long road ahead of them.

Thanksgiving

It sounds like there is news to be thankful for from CMH.  Henry has had several good days.  He's holding steady on his weight and the need for pain meds is continually decreasing.   It seems that lately David & Dana have been meeting with doctors and nurses that saw Henry at the beginning...his nurse that helped admit him to CMH, one of the doctors that followed him those first few days after surgery, etc. They all remark on how amazed they are with Henry's progress over these past few weeks.  I think we have all felt sure that he's a tough little guy, but it's good to hear how much he is proving that to the doctors too.  Keep it up, Henry!

And while you're at it, Henry, how about packing on a few holiday pounds?  Okay, okay, that's too much to ask!  But a few ounces, maybe? 

Another "Shopping with a Purpose" opportunity

Okay, here is another opportunity to help Henry, while also helping yourself...a win-win!  A friend of the family, Dana Thompson, has generously offered to donate 30% of all sales on all Mary Kay products ordered between now and Wednesday, December 8 to David & Dana to help with Henry's medical expenses!  Products can be ordered through: www.marykay.com/dana.thompson.  If you have questions, you can contact her directly at: dana.thompson@marykay.com.  I would also be happy to give you a phone number to contact her, but for privacy sake I didn't want to post that on the blog, so call or email me if you want that info.  Whether you happen to be a follower from close by or further away, all orders can be shipped for no additional charge! 


Also, I just got a message from Dana Hermon that Henry is having a very good day!  He had a few days of losing weight, gaining weight, losing, gaining, etc.  So, hopefully they are coming up with a plan for just gaining.  Will post more details when I know them. 

Have a good day!

A quick update

I apologize for the lack of posts from this week.  It's been a bit hectic and Henry has been holding steady, so there hasn't always been a lot to report each day.  He was gaining weight, and last I heard he is weighing in at 6 lbs, 11 oz...he's held steady there for a few days.  He is still getting some of his feedings through the feeding tube, but is doing great at drinking on his own too. 

He continues tolerate being cut back on the pain meds, only needing a dose about every 12-17 hours now.  That's a huge improvement from a week ago!  I believe that today should have been his last day on the hydrocortisone, but haven't heard for sure on that one. 

David & Dana got to give Henry a bath for the first time yesterday!  I really wish I could figure out how to get videos to upload, because they have some good ones of his bath...he liked it just fine! 

Other than that, I don't know of much else to update on.  Just wanted to get a quick post in before the weekend starts to let you all know that he is continuing to do well.

H - E - N - R - Y not a willy or a sam

Well the little guys is doing great so far today. He did have to have some more morphine last night around 10:00, but there has been a lot of gains. He has gained weight, he is now a 6 pound eleven ounce baby boy. He lost his picc line, meaning he has two little arms for hugs now. He is still taking a bottle every other time he feeds, but yesterday he had a huge meal for such a little guy. 60 somethings (I didn't pay very good attention to the measurement he is getting). Keep praying for the little guy. Let's pray him home!

Thanks to everyone for their thoughts and prayers through this. I heard the other day at church that God has a plan for everything. Each and every event, every action, every turn we make and thing that happens in our lives happens for a reason. God has a plan for this little guy. I can't wait to find out what that plan is.

More good news

I got a text earlier today from Dana.  Sounds like Henry is continuing to show lots of improvement!  They are doing another set of tests today, and then plan to take the PICC line out!  The amount of milk per bottle has also been increased and he is doing great and gaining weight.  All such good news.  I believe that he is still being tapered off of the hydrocortisone and should have at least a few more days left of that.  Praise for all the progress he is making! 

Packing on the pounds (or ounces)

Got a text from Dana today.  Henry has gained two ounces!  That's progress.  I'm not sure at what point they'll feel comfortable with starting the transition back into all-bottle-feedings, but at least this is a step in the right direction.

Henry pictures!

Henry Update:

Good news:

• His thyroid is looking much better!  The doctors have decided that for now Henry won't require thyroid meds daily, but instead on an "as needed" basis.  Wonderful news that that is one less med Henry will have to take daily, one less expense, etc.  He is already scheduled for a test in December to make sure that his thyroid functions ok without the meds, we are faithful those tests will come back with good news.
• They have started tapering the hydrocortisone.  This is one med that he will absolutely have to be off before they can even consider sending him home.  The tapering process takes several days, and we know that Henry hasn't loved being taken off some of his meds...so we praying that this one goes better. 

Not as good news:

• Henry has been losing weight, rather than gaining.  The doctors believe that while he is drinking wonderfully from a bottle, that the energy he is putting into drinking is causing him to burn off too much weight.  So, they are now back to some feedings through the feeding tube...right now alternating bottles with feeding tube.  This seems to be working.  He gained an ounce or two yesterday with this system.  We aren't sure how long it will be necessary for them to keep him on this schedule before starting to get him back to all bottle. 
• They are still working to decrease his dependency on one of his pain meds.  Overall, this process is going well, but yesterday he got a little agitated and needed a dose.  So, there is still some progress to be made there, but already they have been able to taper him back significantly. 

There is still progress to be made before Henry can go home, and at this point the doctors still aren't giving any indication of when that may be.  Of course, we don't want him sent home before he is ready, but we want him home already darn it!  Please continue to keep them in your prayers as we are waiting for Henry to take these last steps and for David & Dana's patience and strength as they wait.

Christmas shopping with a purpose

The idea of shopping with a purpose is something I have been hearing a lot about this year...buying a gift for someone that will also have proceeds that will go to a charity, orphanage, family in need, etc.  Please consider this opportunity when purchasing your Christmas gifts or even a little pick-me-up for yourself.  Simply Light the Way  is a delicious-smelling line of candles...and the candle-makers are generously donating a portion of their proceeds to help with Henry's medical expenses!  We can personally testify to how wonderful these candles are...great scents without being over-powering and they burn very clean & evenly.  Here is a link to their website for information on the scents, pricing, and contact info for ordering:  http://www.simplylighttheway.com/  

Also, a huge thank you to all of you that have emailed recipes for the contest at Danny's school.  I believe that the winners are announced at the end of December or beginning of January.  We will be sure to let you know if one of the recipes we submitted turns up a winner.  We are so hopeful that one will....and there are many that look so good.  We feel that we have a really good chance at this!  For those of you that haven't had the chance to email a recipe yet, you still have a few days.  I think the last day we can submit a recipe is November 20.  So, keep 'em coming! 

Also, for an update, Danny spoke with David earlier tonight and it sounds like all went well with Henry today.  Continuing to slowly back him off his meds!

As always, your prayers are appreciated so very much.  We truly believe we have witnessed the power of prayer in Henry's continued healing and successful surgery.  Their family will continue to need this prayer and support in what is hopefully Henry's last few weeks at the hospital for this round, health for Henry & parents during the cold-and-flu season, growth of the pulmonary veins, financial provisions to cover the medical expenses, and on & on the list of prayers goes.  I am sure David & Dana haven't had the time or energy after long days at the hospital to personally thank all of you for your support, but please do know that they are so grateful for your ongoing concern for their family.  THANK YOU!

More good news from Children's Mercy today!  The oxygen tubes are completely gone and he is breathing well without them.  Henry is now only receiving fluids and his pain med through his PICC line.  All other meds are being given to him by mouth now and David & Dana are learning how to give him those in preparation for when they will be able to take him home (still no news on when that will be).  The plan is that they will further taper the pain med tomorrow...so our prayers are focused on Henry responding well to that change. 

He is continuing do wonderful with his bottle feedings.  He was drinking around 28 mL of milk each feeding yesterday, and he increased all the way to 40 today!  One of the (many) goals before he can be released from CMH is that he needs to be at 50 mL per feeding...and it seems he is well on his way.  Keep it up, Henry!

PLEASE read!!

I posted a little while ago about an opportunity to help David & Dana out financially...all without a single penny needing to be donated yet.  Danny's school is participating in a recipe contest that could win some significant cash prizes.  To date, we have only received one recipe...but we know there are plenty more of you out there with good recipes or that know someone who is a great cook.  PLEASE share them with us!  The deadline to submit these is very quickly approaching. There is no limit to the number of recipes we can submit...so give us all the good ones you have!  It is required that exact measurements are given (i.e. no "pinch of salt" or "dash of pepper").  Please send your recipes to kregier@hotmail.com with the subject "Recipes for David & Dana" or something similar so that I don't accidentally delete it as junk mail.

Also, sorry there haven't been many updates lately posted to the blog.  Things continue to improve for Henry.  All signs are pointing to the likelihood that the problems he had last week were due to changes in the meds.  Since he has been on many of these meds for the majority of his 4+ week old life, it seems he has developed a little bit of dependency on some of the meds.  The doctors are now needing to figure out how to decrease the meds appropriately without causing withdrawl-like symptoms.  But they are making progress on that every day.  David & Dana are also getting lots of time to hold him...which we couldn't be happier about.  He is doing great with bottle-feedings and they are able to steadily increase his milk intake and therefore decrease the amount of fluids he is receiving through his lines.  He has also been moved to an actual crib!  Dana said that when the nurse came to move his old bed away, Henry cried a little bit...he's become a little attached to that thing!  But he's doing wonderful in the crib and is getting lots of sleep now.  Here's to hoping that he'll be sleeping through the night by the time they get him home (except for the times he needs to be woken for feedings).  

We are praying that the good news continues this week. 

Hi Hank

This is Grandpa Don, or Papa Don as Annie's daycare kids call me. It's now been over 3 weeks since I last saw you, touched you, or was able to hold you. It seems like forever! I miss you so much! That's why we need to have this little talk. Grandpa has a favor to ask of you. 5 minutes, that's all I'm asking for..... that's all I want.

I want for you to keep getting stronger and keep getting healthier so that for 5 minutes I can hold you in my arms, look into those big blue eyes (so you better be awake), feel you squeeze my finger (you can pull my finger later when mom and Granny Nanny aren't around), and whisper to you again the next 3 words you need to learn after mommy and daddy..... Rock Chalk Jayhawk!

If you just give me those 5 minutes, grandpa will be so happy and so thankful! So do you think you can work on that for me little buddy? Grandpa is sure looking forward to those 5 minutes.

I love you so much!

Keep getting better,

Grandpa Don

A better day...and more pictures!

Today was a better day for Henry!  They are thinking that the reason that there were problems the last few days is that there was just too much, too soon.  He made such great progress last week, that it may have seemed ok to take him off the meds, ventilator, etc. quickly....but that proved to be just a little too fast for Henry's body to handle at once. 
No infection is detected and his medications are SLOWLY (this time) being reduced.  His meds through the PICC line and midline are now primarily to reduce clotting, help the heart, prevent infection, an occasional dose of diuretic, and liquids and lipids for nourishment.  He is off the ventilator again and breathing on his own.  He is getting room-air oxygen through his nose, but the breaths are all Henry!  The staples & stitches are out!

He is having a precautionary test tomorrow to check out his digestive tract.  They'll put some "glow in the dark" stuff through his feeding tube, and if all looks good there, bottle feeding should start again tomorrow!  He has been taking a pacifier great, so that should hopefully be a good indication that he is ready to drink from a bottle.

And...David & Dana got to hold him today!  We are so happy for them to be getting that opportunity to bond with their son...and hoping they'll add bottle feeding to it tomorrow.  It is difficult to believe that tomorrow Henry will be four weeks old!   In so many ways October was the longest month ever lived, and yet it doesn't seem like an entire month could have passed since he was born.  We are so proud of David, Dana, and Henry for making it through this really rotten month...and are faithful that November will be better. 

And....PICTURES!!!

Dana feeding Henry (before the two day troubles). 

The hospital initially had an "expert" feeding Henry his bottle,

 but David swears Dana did a much better job. 

Something about a mother's touch!

Baby's first Halloween.  From the look on his face, I think

Henry was a little worried about getting tricked rather than treats. 

Unfortunately, that turned out to be true since Halloween

was the day things took a few steps back.

Henry all stapled up.  This gave David the idea that

Henry could be Frankenstein for Halloween.  Where are

the green face and bolts out the side of his head?

Another cute Halloween picture. 

Had anyone else noticed Dana's absence from the blog? 

I don't know if she was being camera shy, or if David just

forgot to take pictures...but she's back!

Henry getting a medication through the midline in his head.

I think a picture says a thousand words about how he

feels about this!

A Case of the Mondays

Below is an email I got from Danny this morning. 

Henry had another rough night. Sort of the same thing as yesterday.
Breathing hard and straining for breaths.


They are going to do another blood transfusion. His heart and lungs look
good and are functioning like normal. They think it has something to do
with the medicine being out of his system and his body not reacting well
to that. He is back on the ventilator, but Dave said he is breathing over
that and not using it much, if at all. This may have something to do with the
acidity of his blood.. Dave and Dana went home, but they
were up there all night again last night. PRAY!

After so many days of good news, it is tough to have a couple of days with some backward steps.  Please continue to focus prayers around Henry's strength and progress forward.