A sample text widget

Etiam pulvinar consectetur dolor sed malesuada. Ut convallis euismod dolor nec pretium. Nunc ut tristique massa.

Nam sodales mi vitae dolor ullamcorper et vulputate enim accumsan. Morbi orci magna, tincidunt vitae molestie nec, molestie at mi. Nulla nulla lorem, suscipit in posuere in, interdum non magna.

Sam’s Status Journal 10/2004 – 03/2006

 Weight: (03/25/2006) 15300 gm (34 lb 0 oz)   Birth weight: 964 grams (3/25/2004) 

Play Sam’s Theme Song


March 25, 2006

Happy 2nd birthday, Sam!!  Check out Sam’s weight chart.  Whew!  34 pounds.  Now there’s a growing boy!  Please excuse the dates displayed on the party pictures.  Grandma J’s camera was a bit confused.  As we all know, March 25th is really Sam’s birthday, and this year the theme for his party was “Blue’s Clues”.

Well Mom and Grandma J just dug in and decorated up a whole party room just for Sam.  And there was PIZZA too!!

 

 Well it was Sam’s first go at a slice of pizza so he was doing more holding, waving, and licking than actual eating, but that didn’t stop the house full of “well wishers” from diving in.  There was “Blue’s Clues punch as well as cake and ice cream.  So we all had just a grand time helping Sam celebrate his 2nd birthday.

A Blues Clues Party! 

 

Cousin Johnny helped Sam with his birthday candles, and Sam got a new computer!  And now batman may just be Sam’s new best friend. 

 

 

Sam has made a great deal of progress this past year.  Last year he was still wearing a breathing and heart rate monitor at night when he slept.  Well, all that stuff is long gone.  No more monitors and no more wires!

He’s an extremely accomplished crawler now.  In fact, so accomplished that a gate across the stairway to the upstairs was required to insure he stays on the same floor of the house as Mom.  He’s accomplished going up – but he still needs some work on the coming down part.

Sam’s not walking yet, but he’s getting there.  He’s a pretty good knee walker though.  He can move across the floor walking on his knees, and then pulls himself up using the couch, foot stool, or piano bench to play with his favorite toys.

Sam is just now starting to get the hang of eating by mouth.  It’s a slow process, but he, Mom, and Dad work on it every day.  Because he continues to have problems eating by mouth, he still has the G-Tube installed in his stomach for feeding.  Everyone will sure be glad when that thing goes the way of the monitors and wires.  Right, Sam?

It was a great party, Sam!  Thank you, and congratulations on your 2nd birthday. 

You’re 2, and we love you big guy!


March 25, 2005

Happy 1st birthday Sam!!  Yup.  If you can believe it, an entire year has passed since Samuel Henry Buesking was born.  So Grandma and Grandpa J loaded up the van, and took a road trip to Southern Illinois to help young Sam celebrate.

There has been a lot of changes in Sam over the past year.  He is now weighing in at a respectable 20 pounds – give or take an ounce or two.  That’s a long way from his light weight one pound thirteen ounces on day 6 last year.  In fact, this young man is starting to become a load – a regular sack’a taters! 

And he’s sporting two – count ’em – two new teeth right there in the bottom front.  All the better to chew those favorite baby carrots, eh Sam?

He still wears a breathing and heart rate monitor at night when he sleeps, but you’ll notice in his daytime pictures (Sam March 25) – NO OXYGEN and NO WIRES.

Sam continues to have problems eating by mouth, so the vast majority of his nourishment continues to come through the G-Tube that was placed in his stomach before he came home from the hospital last year.  He did manage a taste of his birthday cake and ice cream though – with a bit of coaxing from his mom.  Everything in do time though – huh, Sam?

Sam’s party was a blast.  There was cake and home-made ice cream, and there were balloons and streamers, and there were presents too!  In fact Sam got to have two birthday parties this year.  The first party last weekend with Grandma and Grandpa B, and the second party this weekend.  And both parties had PRESENTS!!  Yea, Sam!!

Rusty dog was enjoying the weekend too – until he tried to make friends with a transient skunk Friday night.  Urrrrrrrrr!!!  Paige provided the doggie bath recipe, and Jenna and Mike rescued poor o’l Rusty dog (and us too!!) from a night of skunk stink.

Thanks for sharing your birthday with us, Sam.  Grow strong, big guy.  We love you!

 


November 24, 2004

Sam went to visit a new pulminologist (lung doc) yesterday.  Jenna and Mike liked him a lot.  He practices at Cardinal Glennon hospital, so the atmosphere and folks at St. John’s will be greatly missed.

Sam’s status right now is no breathing treatments, and no sippy cup, but he is attempting a couple of spoonfuls of oatmeal twice a day.  We’re in training for Turkey day, right Sam?

Sam is gagging and choking on his own saliva a bit more frequently.  So to get a better idea concerning the tightness of Sam’s fundo and how his esophagus is functioning, a consultation with Sam’s GI doc is on the “To Do” list.

See you this weekend, Sam.  Have a great Thanksgiving!

 

November 6, 2004

Wow!  Was last weekend a great time.  Jenna and Mike were invited to a wedding in St. Louis last Saturday as well as a pre-nuptial dinner Friday night.  Well, with all that running back and forth to St. Louis someone was needed to keep an eye on Samuel – So… Grandma and Grandpa J got to baby-sit with Sam for almost all of the weekend!!  What a treat that was.  Checkout the picture to your left.  Sam and Grandpa having some guy time watching Saturday morning “Toons”.  More Halloween pics available by pressing “Sam October 31”.

Oh yea.  Checkout Sam’s Superman outfit above.  He got all decked out to go Trick or Treating Sunday only to have his outing foiled by extensive neighborhood leaf burning.  Sorry little man.  Trick or Treating is a great time, but you’ll get ’em next year, right?

Make sure you click on Sam’s Superman picture.  It’s musical!

 


October 23, 2004

Yea Sam!!  Say that to young Samuel and get a great big grin!  Check out this happy little fella in the picture on your left.  And checkout his latest pictures by navigating to Sam October 23.

Jenna says Sam is not nearly as fussy now, and she attributes that to the wonderful way Sam has responded to his new stomach medicine.  Less stomach pain equals a much happier baby.  I can relate!  Stomach pain makes me grumpy too, Sam!

Sam is eating about 700cc a day, and he’s working his pacifier more so the bottle is once again having a bigger presence at dinner time.

Stay after it big guy, and grow strong.  We love you!

 


October 7, 2004  

Jenna reports:

I just thought I’d let you all know how Sam’s been doing since we’ve implemented the GI doc’s changes.

Sam is doing much much better.  Mike and I are more sleepy 🙂 but Sam is so much happier.  He’ll go through an entire feeding now without crying.  And average time for a feeding has reduced to 15 minutes.  He’s not as gassy as he used to be, and really seems to be more content. 

Each of his therapists has commented on how relaxed he seems.  I think he was always in pain, and now that he’s not, he can rest easy and play happy.  Even his physical button area is looking better… it’s not as red and is not oozing like it was just two days ago.  I’ll be calling the GI doc tomorrow to tell her this news, and see what the next instructions are. 

He just went to his pediatrician today for his RSV shot.  I’m so glad Mike went too.  It was a tricky one this time, with bleeding and general ickiness.  Sam’s been a bit fussy and really drowsy tonight.  I wish we could give him Tylenol, but he can’t have any medication while on his ulcer medication and we decided his ulcer medication was the more important option. 

He weighed in at 11 pounds 2 oz!!  Guess the GI doc’s diet is doing good stuff for him!

Love you Jenna

 


October 4, 2004

 

News about Sam – from Jenna:

Whew!  The past few days have been something to say the least! Sam’s feeding issues continued to escalate, going from bad to worse, actually.  Thankfully, his GI specialist was able to squeeze us in this afternoon. Finally, a doctor confirmed what  we had been suspecting for the past three weeks… his button is probably the cause of the problem! 

For the past three weeks, three doctors had considered my concerns over the button immaterial. ha! a mom’s instinct ….and thank God, something can be done about it. She believes that due to his growth, his stomach has stretched and reformed and the interior balloon of the button might be rubbing against his stomach lining, which in turn can cause a type of ulceration.  She gave us some medication to coat the ulcer, hopefully easing his pain until it can heal.  She also decreased the volume of his feedings but increased the frequency, so Mike and I will not reap the benefits of Sam sleeping through the night anymore.  But hopefully our Sam won’t be so miserable and sad. 

Finally, she took away the formula calorie booster saying that many NICU babies become intolerant of the formula after a while.  She gave us until Thursday to see if these changes help.  If not, we’ll go to a continuous pump system (like the kind in the NICU) so Sam won’t have to deal with any sort of bolus feeds. 

We are so thankful this doctor took our concerns seriously and hope hope hope the changes will help ease Sam’s pain.  It took two hours to feed him tonight due to his cries.  Please pray that tomorrow will be a better day for him. 

Love Jenna

 

 


October 2, 2004

Jenna reports that Sam was really brave when he went to the doctor for his booster shots.  The doc stuck him 5 times!  Four booster shots and an extra shot for the flu.  And next week he has to go back again for his first RSV shot.  Sheeeezzz!

Jenna says Mike was just as brave as Sam was, however the after effects seem to have affected both Sam and Mike.  Checkout her recovering guys in the picture to your left.

Jenna reports that Sam is again having problems eating.  He has decided that the bottle is his enemy and screams when he sees it.  He seems not to like the whole idea of eating anymore, and becomes very agitated whenever Jenna starts getting ready to feed him.  An appointment has been made with Sam’s feeding specialist, and a “swallow study has been ordered.

Stay strong big guy, and thank you everyone for all your support and for all your prayers.  Sam needs every one.

 

Sam’s Status Journal – Sept 2004

  


September 27, 2004

Grandma J loves the zoo, but Sam can’t go with her just yet.  Sooo…. Grandma decided that the next best thing was to buy Sam the biggest cutest stuffed giraffe the store had to offer.  What do you think, Sam?  It’s sooo big!

It’s been a busy past week for young Sam.  On Tuesday, Sam took a road trip to St. Louis.  He seems to enjoy chewing on the bottle’s nipple more than sucking on it.  As a result, he doesn’t get to eat all of his dinner before he becomes too tired to finish.  Consequently, Sam had an appointment with a feeding specialist.  Jenna and Mike were really impressed with the information she provided them, and hey have already noticed improvement in Sam’s eating since the visit.

On Friday, Sam hit the road again.  This time to see his surgeon as well as his pulminologist.  The surgeon said Sam didn’t have to come back anymore, and the lung guy recommended nebulizer treatments twice a day as a treatment for Sam’s coughing.

Grandma and Grandpa J came to visit on Saturday, and helped Sam celebrate his 6 month birthday.  Sam is starting to become a load!  10 pounds 12 ounces!  Ata boy big guy!

Stay strong Sam.  ‘Cause on the 30th, there’s going to be more shots!!  Urrrr!!

 


September 9, 2004

I just got a note from Mike.  Sam’s nurse stopped by the house yesterday to check him out, and while she was there Sam weighed in at – 9 pounds 12 ounces!

Mike went on to explain that it was going to be her last visit.  It seems Sam is getting too healthy for in-home nursing care!

 


September 7, 2004

Just got these pictures.  Hot off the press.  Sam with Mom and Dad.  Is this a great looking family or what?

 

 

 

 

 

 


 

September 5, 2004

Ooops!  Sorry.  Linda and I are spending the weekend with Jenna, Mike, and Sam.  So I thought this would be a good time to update his web page.  It’s amazing how “big” people can get so distracted by one so small.  Actually not so small anymore.  Young Samuel has leaped over the 9 pound barrier, and has actually outgrown his “preemie” diapers too!  As a result, he’s wearing BigBoy diapers now.   Anyway, I started writing this and updating his photo section and never got back to the writing part.  So those of you that were wondering what happened – Grandpa just forgot.  Hmm.

Sam is healthy and happy!  I can hear him on his baby monitor as I write this.  He’s talking to his mom and dad explaining how it’s breakfast time and time to get up.

Time spent with Samuel is such special time.  We treasure each moment we have.  Watching him grow strong is an answered prayer.

 

 

Sam’s Status Journal – August 2004

 

August 22, 2004

What a great weekend!  Jenna and Mike, and Linda and I got to spend the weekend together – and with Sam!  I had not had a chance to visit Sam since he came home from the hospital so this was very special for me.  And WOW!  What a big boy young Samuel has become.  Somewhere between 8 pounds 3, and 9 pounds 1 ounce.  It seems Sam’s last weigh-in was with his clothes on while wearing an extremely full diaper.  So anyway, we just can’t count the plus 9 pound number – not just yet anyway!

Sam’s eating approximately 100cc every 4 hours.  Except last night.  He slept all night long!  He didn’t wake up to eat, and he didn’t have any heart rate drops all night!  In fact, he didn’t have any heart rate drops the entire weekend!  No alarms of any kind!  Pretty exciting stuff, huh?

There’s nothing quite like the pleasure a grandpa feels when he’s bouncing a grandchild on his knee – And Sam just loves it too!  We had a chance to really get to know each other.  You can see what Sam thinks of the whole thing – Just click on the picture above – Hmm.J  Checkout the rest of Sam’s new pictures when you visit “Sam August 22”.

Thanks for the hospitality, guys.  It was great!  But the home made French onion Soup and Carrot Cake were the best!

 

August 18, 2004

I got an email from Jenna this morning.  It seems Sam went to the doctor yesterday.  He needed to get booster shots!  I like the sound of that.  They weren’t shots for some new problem.  The weren’t shots for yet one more procedure.  They were normal shots that all kids get – they were booster shots!  It’s hard to believe, but Sam has been a member of our family for nearly 5 months.

Jenna tells me Sam did great with the shots.  He needed 4 of them – urrr!  It was his mom that had the problems.J

Love you Sam!  See you this weekend!

 

 

 

August 10, 2004

Sam had a barium test yesterday when he went to St. Louis to see his GI doc.  The test indicated that Sam didn’t have a reflux problem after all!  So the Prilosec got tossed, and according to Jenna’s latest report, Sam is feeling oh so much better now. 

Heart rate drops still happen though.  Maybe 3 or 4 times per day.  It was thought that reflux may have been the culprit, but now…  the doc calls it a “Sam thing”.  A premature baby thing.

Sam’s eating 80cc at every feeding (3 to 4 hours apart).  He was taking most of his meals from a bottle last week, but because he was getting too tired he now “nipples” for his dinner only twice a day and his other feedings are through his G tube.  Sam seems happy with this, and Mike says he’s even smiling more.

Sam and I had our first conversation on the telephone this evening.  It was a special moment.

 

August 7, 2004

It’s been a tough couple of days for Samuel, and for his Mom and Dad too.  Eating hasn’t been high on Sam’s fun list.  For a young man that had been enjoying 75cc at every feeding, to only want 10 is definitely cause for concern. 

It seems the trauma Sam endured during and after his “fundo” operation has produced little if any positive results.  Consequently, Sam must still use Prilosec as well as Mylanta in order to control the terrible reflux episodes he experiences.

Anyway, Sam’s problems appeared so serious yesterday that Sam and family loaded up and went to see Sam’s doctor.  Well the doc wasn’t overly concerned about Sam’s condition.  He did lower Sam’s dosage of Prilosec (he thought it was too high), and tossed Mylanta in favor of Maloxx (something to do with possible constipation).  Good idea, Sam!  Remember those enemas a few months ago – Urrrr!!!).

Sam will make a road trip on Monday to visit with his St. Louis GI doc.  Hopefully all the remaining questions and issues can be dealt with then.

7 pounds 4 ounces, Sam!  No time for a diet big guy!

 

Sam’s Status Journal – July 2004

 

July 25, 2004

Can you believe it?  Sam’s been home for two weeks already, and yesterday there was another celebration of Sam’s birth.  A second baby shower was held for Sam at Faith Lutheran Church where Sam’s family and friends came to offer their congratulations as well as their love and support for Mike, Jenna, and Sam.

Sam is still very fragile so he was not able to attend in person.  He continues to wear an apnea and heart monitor as well as an oxygen nasal cannula.  This whole deal of breathing, swallowing, and sucking is still a difficult challenge for young Sam.  So heart monitor alarms have been fairly common occurrences.  And these are not just little annoying audible alarms.  These are loud, ear splitting, get your attention, and fix the problem right now alarms.  Consequently, sleep is a precious gift in the Buesking home.  Right Grandma J? 

Jenna does report, however, that Sam continues to improve, and his heart rate monitor does not scream as often as it did when Sam first came home. 

Tomorrow Sam travels back to St. Louis for a doctors appointment.  This time with the elbow guy.  Sam needs a new brace built for his left elbow (because he’s getting so huge – 6lb 4oz!!), so the doc needs to do some poking and prodding as well as take some measurements in order to get Sam fitted properly.

To checkout Sam’s new pictures, stop by July 9, July 24th, and July 25th in order to get caught up.  There are even a few new movie clips.

 

 

July 17, 2004

A brand new Buesking family arrived home Monday night around 8 pm.  Sam was wide awake after eating, so the plan was for a celebration.  But by the time Mike got back from the grocery store with the steaks, and Sam was fed again, and they got the food cooked, and Sam quit fussing, the celebration was actually a very quick shoveling activity of cold calories.  Jenna says this was their first lesson of “eat while you can and don’t be fancy about it.”

Tuesday was Sam’s first appointment with his pediatrician.  The appointment wasn’t until 2:45, but Jenna and Mike began planning for it at 9 am.   All in all things were pretty good to this point.  But then they left for the doctors…

They loaded Sam into his car seat, put him in the car, pulled out of the driveway, and before they even got a block away, Sam’s alarms started going off.  Mike slammed the brakes, Jenna jumped out while the car was still moving and found Sam was a bit blue.  Thereafter, Jenna says she rides in the back seat with Sam. 

Wednesday Sam slept and ate and did little else.  Jenna continued to unpack from St. Louis and Sam got his first in home nursing visit. They all loved it so much she stayed for two hours.  She checked him out, said he was fine.  That night Jenna fell into an exhausted sleep.  Mike didn’t.

On Thursday Jenna believes they started to finally find their groove.  They all started to settle into a routine.  They are better now at holding Sam, his monitors and cords, and feeding apparatus all at the same time.  They have gotten more and more relaxed.  Sam’s nursery has been organized, and the biggest thing for Jenna has been learning when to start Sam’s feedings before he develops a real attitude.  Jenna says Sam has had a lot of adjusting to do, and both she and Mike have had a lot of learning to do.  But they are beginning to figure out Sam’s equipment better now, and his alarms are not going off as much. 

Friday Sam started having problems breathing.  He was congested, and when Sam’s nurse came to visit they decided that Sam should go visit his pediatrician.  The doc pronounced that Sam was fine, just a bit of upper head congestion and with some saline and suctioning and some nebulizer treatments he was just fine.  He said Sam’s lungs are clear and he isn’t sick.  It’s just something babies get.  Whew!!

Saturday Jenna’s focus has been trying to get a cute picture of Sam.  Mike has been doing some painting in the garage.  And Jenna even had time for a nap.  She thinks they’re getting the hang of this!! 

Much like his last week at St. John’s, Sam’s first week at home has had some really good moments mixed in with some bad moments.  Jenna and Mike are both tired, but also exhilarated to have their family finally together at home.

And get this!!  It seems young Samuel has developed a real passion for his bouncy seat, being read to, and watching TV!  A couch potato in the making?  Maybe for now – just a bouncy seat Spud!

 

July 12, 2004 – 7:59pm EDT

Well…  I don’t know much just yet, but Sam is indeed on his way home!  Just received these pictures from Jenna’s new super duper picture phone via Grandma J.  It looks like Sam is definitely on the move (if you can see him under the hat).  Riding in his brand new car seat…Somewhere in Southern Illinois.

Sam already has a theme song (The William Tell Overture), and now I think we all know what his slogan is:  Just Do It !

 

 

Look’n good, big guy!

 

 

 

 

July 11, 2004 – Continued

Roving reporter Grandma B just sent me a “Sam News Flash” —–

This is one excited grandmother. I am at our condo on the lake. I attended a worship service     this morning and the pastor said a prayer of thanksgiving for our miracle baby, Sam, and asked God for a successful transition as he goes home for the first time this week. When I came back to the condo, I phoned Samuel’s primary nurse, Shelly. She told  me some great news that I want to share with you. Sam and his parents spent last night together in a room close by in the hospital and they all did great! Another primary nurse of Sam’s, Jayne, will be getting him ready to go home TOMORROW and Dr. Maurer, the head of the NICU doctors and staff at St. John’s Mercy Hospital, and the doctor who first met Mike and Jenna the night before Sam was born, will be there tomorrow to discharge Sam and send Samuel Henry Buesking HOME for the very first time in his life. He is one of the doctors who worked so very hard to save our precious baby that first day of his life. Now, you know why I am SO excited. Praise the Lord for this wonderful gift.  I wish my son and his wife the very best in their new life with their son.
I will always keep them in my prayers.
Have a Blessed Day!
A grateful, Grandma Doris

A confirmation from Grandma B:

Just had a phone call from our son confirming what Nurse Shelly had told me about Sam going home tomorrow. They just have to make sure the monitors and oxygen supplies arrive at Sam’s home in Mt. Vernon in time for him. Needless to say Mike was very, very happy to tell his mother the news. Now I can shout the good news to everyone in sight! Thanks for listening. Hope I didn’t hurt your ears too badly. Ha!  Love, Grandma Doris

Well…  Here I am with my mouth hanging open.  I don’t quite know how to feel about this news.  Obviously excited, obviously so very grateful, but at the same time nervous, apprehensive, and quite frankly scared to death.  Sam has been so sick and so fragile for so long.  Leaving the hospital is a scary thing to grasp.  And leaving TOMORROW!  I was just getting used to Thursday!

So many prayers offered up from family, friends, and people we may never know or meet. So many to thank.  So many skillfully gifted professionals intensely focused with a divinely guided devotion to life.  How can we ever hope to thank the doctors, nurses, and technicians that have devoted the past 3 1/2 months of their lives to saving one life – the life of our grandson.  Words fall so short of my gratitude, and are themselves so inadequate.  Know that the friends and family of Samuel Henry Buesking will forever keep each and every one of you close, and in that most special place in our hearts reserved for heroes.

Thank you!

 

July 11, 2004

Ok, here’s some news.  It seems that Jenna and Mike are making all necessary preparations for taking Sam home this week.  And St. John’s Mercy Medical Center is doing their part too.  This weekend Mike, Jenna, and Sam are spending 24 hours together.  The hospital calls it “Rooming In”.  During this period, Mike and Jenna will be responsible for all of Sam’s needs, and Sam will be totally dependent on just Mike and Jenna.  One or the other of them must always be with Sam constantly for those 24 hours.  St. John’s has set them up with a private room (not too far from the NICU).  It’s sort of a practice run before they actually leave the hospital.  Sounds like just a great idea.

Sam is doing much better eating now too.  The docs and nurses have figured out that Sam doesn’t get all choked up when drinking his bottle if he lays on his side instead of on his back.  I guess he has to work a little harder and the fruits of his labor take a little longer so not so much milk to deal with all at one time.

Glad to hear you’re doing better little one, and have a great time with mom and dad. 

You’ll be home soon!

 

July 10, 2004

I have very little “Sam” information to report.  Grandma J does report that Sam had a “swallowing” test the other day just to verify that there were no abnormalities.  The results of that test were normal.

And Sam’s rescheduled discharge date is now this coming Thursday – July 15th.

I’m going with, “No news is good news!”

 

July 7, 2004

Great Grandma Bev came to visit, and ended up holding Sam for over an hour on Tuesday!  Grandma J went to visit, and ended up holding him for over 4 hours today!  Sam’s nurse even told me to pull up a chair Monday evening after I arrived in St. Louis, and while I was still mumbling, “but…” handed me my 5 pound baby grandson.  Can you believe Sam weighs five pounds now?

Sam cracked his left eye lid a bit, we had a moment together, and then he fell asleep.  Sam’s face was a picture of contentment.  There were no hoses or cannula pushed up his nose.  There was however a needle in his head!  Sam was requiring some blood Monday.  It seems Sam’s blood count was low and the docs felt as though he could use a bit of a boost.

Tuesday was test day for Sam.  He had an MRI to verify the status of his brain.  He had his eyes tested to check out the status of his ROP, and his ears were tested to insure no impairment to his hearing. 

Well, we’re still waiting the results of the MRI, but Sam’s eye exam revealed that the stage 2 ROP (Retinopathy of Prematurity) Sam was diagnosed with was gone!  His eyes are normal!

Sam developed a very serious ear infection last week, so we all were concerned about the hearing test.  Possibility of a ruptured ear drum existed.  Well the hearing test proved Sam’s hearing to be just fine!

Tuesday was also the day of Sam’s very first baby shower.  Grandma and Grandpa B organized a “Sam” shower at St. John’s hospital Tuesday evening.  Everyone had a great time. There was food and drink, a couple of computer generated slide shows of Sam were running, exciting games were played (Grandma J won a posey), and Mike and Jenna received a literal “car load” of wonderful and much needed gifts.  Thanks Doris and Art!  And thank you to everyone that came.  So many friends for one so young!

Sam has finished all of his “going home” vaccinations, experiencing no problems at all.  And Monday evening, when Great Grandma Bev, Great Uncle Jim, Great Aunt Gayle, cousin Mike and cousin Natalie arrived from Iowa, Jenna picked Sam up from his bigboy bed in the NICU and carried him to the window with no wires or hose attached anywhere!  What a beautiful young man!

Sam’s three year old cousin Madison and mom Shelly were even able to say hi to Sam close up and personal, as Sam was being wheeled down for his MRI Tuesday afternoon.

But…

For those that have followed the life of young Samuel through these pages, we all know how the roller coaster runs, and about that heart wrenching “but…”. 

It seems last night Sam needed to go back on breathing assistance, because of some very disturbing failure to breathe episodes that caused Sam to actually turn blue and even darker.  Some very serious moments last night.  He’s not on a ventilator, but he is wearing the cannula again, and the docs have postponed his departure from the hospital a few days to evaluate his condition.  So it doesn’t look like Sam will be home this weekend.  Sam’s Grandpa certainly thinks that is absolutely the correct choice.  Sam is in the best possible place he could be until all this is under control.

Roller coasters are not your Grandpa J’s favorite, Sam!  Grow strong, little man.  We love you!

 

 

July 3, 2004

Well everyone seems to be making plans.  Mike and Grandpa B are busy with paint brushes, and have also assembled and made ready young Samuel’s new crib.  Grandma B is busy making plans for a baby shower(s) and making ready Sam’s cradle.  Grandma J and Great Grandma Bev are ricocheting about – planning for their trip to St. Louis, and even out of state relatives are making plans to visit Sam before he leaves the hospital for home.  Not to be outdone, Sam’s doctors have even started giving Sam his vaccinations!  The poor little guy just can’t get away from those needles!!

Sam’s eating 28cc every two hours.  He’s back on a vitamin regimen.  He’s breathing normally except when he eats, and then he gets a little help from his Vapotherm.

Mom and Dad are taking a couple of days for themselves in preparation of Sam’s arrival, and the docs even have Sam’s “green gunk” infection under control.

It’s a very exciting time.

 

July 2, 2004

Sam’s feedings have increased to 24 cc per hour and they are adding in human milk fortifier in hopes of increasing some weight.  He’s lost a few ounces since his surgery.

A concern is that Sam may be fighting off yet another infection.  Urrr!  He could have a small infection at his g-button site and in his right eye – Jayne (his primary care nurse) found some green gunk in both places. 

Sam is still doing swell at bottle feeding, but he has turned blue a few times while doing so.  Jenna reports that he is not pacing himself well enough anymore.  He’s too hungry so he sucks too hard too fast and can’t handle the results.  The docs don’t seem too worried about it as he’ll eventually figure out sucking, swallowing, and breathing all at the same time. 

Jenna got Sam’s “discharge packet” yesterday!! There’s a rumor July 10th could be a memorable day!
 

Stay after that gunk, Sam.  A week from tomorrow!

 

July 1, 2004

I received an email from Jenna last night.  Let me quote.  “What a fabulous 24 hours!”

Sounds like she and Sam had a pretty good day.  Jenna reports that for the past 24 hours Sam has only cried when he was hungry.  He’s eating 22cc every 2 hours, and if he is awake, he takes his feeding by bottle!  Sam will down that bottle in about 5 minutes and loves every minute of it.  Then he is just happy to go to sleep until it’s time to eat again.  Hmm.  I didn’t know that was a “built-in” feature.  I always thought a man’s ability to eat and then fall to sleep was a conditioned reflex learned over years of practice.  Perfection only being realized in middle age.  Well…  It’s just shocking to learn that we’re born with that ability!  And it seems Sam is already a master! 

Jenna and Sam have nursed 4 times already!  Two of those times were great successes because he latched on right away and knew exactly what to do.  Jenna believes it all depends on how sleepy or angry or hungry he is.  If she can catch him in the right mood, he’s all for it!  Jenna was going to try again last night.  Sam’s a bit of a night owl like his mom, and Jenna reports that he’s a much friendlier sort of dude after dark.

The NEEDLES ARE GONE!!!!  Sam’s IV was removed from his arm yesterday, YEAH!!!  Now that’s something bound to make anyone happier!

Ah, but wait…

The greatest news Jenna reported was that Sam is coming HOME!!!!!!!!!!!!!!  The docs are aiming at Monday or Tuesday the third week of July.

Yup.  I think Jenna said it all.  “What a fabulous 24 hours!”

 

Sam’s Status Journal – June 2004

June 29, 2004

Major surgery really hurts, and recovering from major surgery takes a lot out of a little fella.  So naturally Sam’s recovery is taking a bit of time. 

Sam’s surgeon reported that when he performed the “fundo” procedure he found that Sam’s stomach was very small.  Consequently, following Sam’s surgery his stomach was made even smaller yet. 

As a result, Sam can not yet eat the quantity of food required to keep his weight constantly increasing.  Whether his abnormally small stomach was because Sam was born 14 weeks early, or because he has been fed through a NJ tube into his intestine for the better part of the last three months, Sam’s stomach never really fully developed.  What was apparent was that Sam had extreme discomfort every time he was fed following surgery.  Initially, Sam’s discomfort was so intense that he cried every time he ate. 

His feedings had to be cut back to 16cc every 2 hours.  He is now receiving 20cc every 2 hours through his ‘G’ tube.  The docs would have liked for Sam to be eating 32cc every 2 hours.

Every now and then he is given a bottle to keep his interest up, and Jenna reports tonight that she and Sam tried nursing for the very first time.  It wasn’t completely successful, but optimism reigns for tomorrow.

Sam is still sporting an IV in his arm.  With his reduced rations, Sam needs some extra nutrients in order to make sure he gets everything he needs.

Well…  I guess you know you are a senior member of the NICU when folks start talking vaccinations!  No one is cranking up a needle just yet, but a “young one” needs his shots at least two weeks prior to discharge.  Hmm.  Something to watch for!! 

Goodnight, Sam!  We love you!

 

June 26, 2004

Sam let us know Thursday he was not a happy camper.  Sam was on a ventilator which he didn’t like.  The nurses had to suction  his lungs to remove lung “gunk” because he couldn’t cough.  He didn’t like that.  The docs were weaning him off his high powered pain medication – and he really didn’t like that!!  All this while trying to recover from some very major surgery caused Sam some very intense moments –  desats, turning blue, as well as a foot stomping grumpy attitude.  I think we’d all be a bit grumpy though too! 

But Jenna reported yesterday that Sam’s life was much improved.  He’s off the ventilator!!!  And he even got a little dinner through his ‘G’ tube.  Whew!  A full tummy, and breathing on his own.  That has to help his attitude a lot! 

You show ’em, Sam.  We love love you big guy!

 

June 23, 2004

Sometimes you just love an uneventful day, don’t you? I just loved today!  Sam is doing well.  He is still on a ventilator from surgery and the reasoning is that Sam needs to have some fairly potent pain medication right now.  Medication that relaxes and calms him so much that he would probably forget to breathe without the help of the ventilator.  So if the docs remove the vent, Sam can’t have the “good stuff” to manage his pain from surgery.  Well that’s not good!  So he keeps the ventilator for a while longer, and the docs will start to adjust things and continue to monitor Sam’s vitals until they can completely remove it.

Sam has been pretty much kicked back today.  He cracked an eye lid a couple of times and looked around a bit when he was having his shorts changed, but for the most part the “good stuff” is doing its job.  Sam is not feeling much pain, and he has some fantastic nurses taking care of him around the clock.

Prayer is indeed powerful, isn’t it!  Goodnight, Sam.  We love you!

 

June 22, 2004

Sam’s surgery was scheduled to happen this morning, but for one reason or another it actually didn’t start until about 1:30 in the afternoon.  So Linda and I were able to make it to St. Louis in time to see Sam before he went into surgery.

About two hours later, the fundo (Nissen Fundoplication ) surgery was over and Sam was wheeled back into the NICU.  Seeing Sam come back to the NICU was a very calming event not only for Sam’s Mom and Dad but also for Sam’s anxiously awaiting Grandmas and Grandpas.

The surgeon explained to Jenna and Mike that all had gone well in surgery, and that he was able to repair both of Sam’s hernias in addition to completing the “fundo” procedure.  During that portion of the operation the surgeon wrapped the upper part of Sam’s stomach around his esophagus and formed a collar-like structure in order to prevent stomach fluids from backing up into the esophagus. This is the procedure that will hopefully “fix” Sam’s reflux problems.  Additionally, he inserted a “G” tube to provide direct access to Sam’s stomach.  On the outside of Sam’s stomach, the “G” tube looks like the cap on a sports drink squeeze bottle.  Sort of a “pop-top”.  After a few days, Sam can be fed through this tube, and it can also be used for venting gas build-up.

Because Sam will not be able to eat for a few days while everything is healing, he has an IV installed providing the nutrients he needs.  And while he recovers, the docs are keeping Sam fairly well medicated in order to eliminate as much of his discomfort as possible.

A very full and a very eventful day.  When we left the hospital this evening, Jenna and Mike had left for some much needed sleep, and Sam was back in his bigboybed himself resting comfortably under a balmy heat lamp.

God’s peace, Samuel.  Heal and grow strong.  We all love you, Sam!

 

 

June 21, 2004 – continued (5:00pm edt)

Just received word that Samuel’s exam with the ear, nose, and throat specialist revealed that his tracheal area is indeed inflamed, raw, and swollen.  As a result, Mike and Jenna have decided Sam should go ahead and have the surgery. 

He is scheduled for surgery tomorrow morning, but we don’t really know what time yet, only that Sam is scheduled to be the 4th procedure.

You are always in our thoughts and in our prayers, Sam.  We love you little man, and we’ll see you tomorrow.

 

 

June 21, 2004

Sam’s been having a little raspy dry cough lately, so a new specialist (ear, nose and throat) is going to stop by to see Sam this afternoon.  He’s bringing with him a throat camera for Sam to swallow so that he can take a look at Sam’s tracheal area. 

Dry raspy coughs can be caused by reflux, so the docs want to see if Sam’s reflux has been bad enough to cause his tracheal area to become inflamed and raw.  If that is the case, then surgery must be done to insure that Sam does not aspirate stomach acid into his lungs causing more damage.

I learned a new thing yesterday.  There is a period of time after birth when newborns start to exhibit a desire to suck.  Sam’s a pro at this.  Well.. there is a “window of opportunity” that exists for those newborns when the “opportunity” to suck must be presented to them or they will loose the desire.  Sort of a “use it or loose it” thing.  This is another consideration for doing the surgery.  Sam needs to eat and eat allot in order to grow.  He needs to be able to suck down a bottle without fear he may aspirate into his lungs.

So…  Just to make sure that Sam doesn’t “loose” anything, the docs have ordered that he receive 2 twelve cc bottles everyday.  He had his first yesterday at lunch time – and did Great with it!

His lungs, by the way, are looking pretty dog gone good!  Jenna told me that she and Mike had an opportunity to compare Sam’s current chest x-rays to his x-rays from a month ago.  She said she couldn’t believe it was the same child.  Sam’s lungs have “greatly” improved in the past month.  Another consideration for surgery.  We certainly don’t want to do anything or neglect to do something that could possibly cause damage to those rapidly improving lungs.

Sam’s primary care nurse, Jayne, reports that Sam is now on just room air!  21% oxygen (which is room air) is passed through his Vapotherm where a bit of humidity and pressure is applied.  But no added oxygen is being provided.  It’s just Sam breathing into a wind.  Wow! Hard to believe!  And…

No heart rate drops in 2 1/2 days!

So we wait for Doctor Ken’s rounds, and we wait for the ear, nose, and throat guy’s report.

Love you, Sam!

 

 

June 20, 2004

Jenna reports that Sam held his own again yesterday.  In fact, she says that he basically slept all day after sleeping through the night the night before. 

But I guess when he wakes up… he’s one cranky baby!  He’s even got the quivering chin and pouting bottom lip thing going now…   he really wants to eat! 

So…  with a little slight-of-hand Sam’s nurses are tricking the little fella with a full cc of Mylanta and then 1/2 cc of Reglan through a nipple.   Then he dozes off.  Hmm…  it seems young Samuel is quite content just as long as he gets something (anything!) to suck on.

Jenna says he’s very cute, and becoming more baby-like everyday.  And “little” Samuel weighed in at a robust 4 pounds 2.5 ounces last night.  Good stuff, Sam!

Doctor Dreyer will have a look at Sam today, and then Doctor Ken will make a go/no-go decision tomorrow about Sam’s fundo (Nissen Fundoplication) surgery scheduled for Tuesday.

Have a good day today, Sam.  And the next time you see your Dad give him a big thumb squeeze and wish him a very Happy Father’s Day!

 

June 19, 2004

Sam’s surgery has officially been rescheduled for Tuesday the 22nd.  BUT WAIT…

Well ok.  It’s only been two days since Sam started his test period.  And Sam’s condition can change quicker than you can blink, but check this out…

I get a call from Jenna last night, and she is totally pumped.  It seems young Samuel slept all through the night the night before (6 hours), did not have one heart rate drop yesterday… at all, they had to reduce his oxygen flow from 3 liters per minute to 2 liters per minute because it was too annoying for Sam, his stools are much improved and appear normal, he weighed in at that magical 4 pound mark, and Jenna says his attitude lately is just because the little guy is HUNGRY!

So get this!  Jenna was holding him last night, and Sam was having a sucking frenzy.  He was sucking on her face, and on her neck.  He was even trying to suck on her clothes.  So his nurse just decided it was time… She heated some milk (5cc) in a baby bottle, gave it to Sam, and he sucked it down like he had been doing it everyday for the last 3 months!!  No problem at at!  No choking or coughing.  It seemed he had this whole deal of breathing, swallowing, and sucking all at the same time figured out quite nicely thank you.

Now granted he is still taking a bit of Pepcid, and some Zantac, and he even gets Mylanta from time to time (and he gets that through a nipple!).  So his reflux is being managed much better than previous times he has tried eating through a NG tube down his throat.  But…  Pretty exciting stuff though, huh! 

A couple more days of this… ???

And like Aunt Debi says, “He is for sure our little “Iron Man” who was on a mission and he succeeded!”

You show ’em, buddy!

 

 

June 18, 2004

Well…  So far so good.  I spoke to Jenna last evening, and Sam is holding his own pretty well.  The NG (stomach) tube went in about 11 o’clock yesterday morning.  He’s receiving 12ml per hour continuous feeding along with some Zantac AND some Pepcid AND some Reglan.  Well…  Whatever works, right?

Physical therapy was able to verify Sam’s sucking capability yesterday, and he received an “official” passing grade.

So now we just have to wait and see how he does over the weekend.  One day does not a good test make, but the docs indicated that 4 hours was a significant milestone.  Hmm.  Way to go, Sam!!

 

June 17, 2004

Sam is letting folks know his feelings about things more often now-a-days.  He never used to complain about stuff…  Well…  It seems young Samuel has outgrown that approach to life.  Jenna reports Sam’s attitude got cranked up again yesterday when the nurse put his arm splint on.  He didn’t like it and he wanted everyone to know!   As a result, he got lots of treats (oh, the bribery starts so young), and then he spent the better part of splint time on a sugar high. J

Physical therapy yesterday wasn’t much better than the day before.  Sam slept through all of it!  So now the therapist has no idea what his “suck” is like.  Jenna reports that Sam will have no problem sucking a bottle though.  In fact, she says that Sam sucked his barium cocktail through a nipple for his upper GI test!  And he’s sucking his new medication “reglan” through a nipple now too.  Reglan was started yesterday in an attempt to get his tummy ready for food.  It will help Sam empty his stomach faster so hopefully less food will have an opportunity to back up.

So…  Today is the day for Sam to start using an NG tube (stomach tube) again.  Think good positive thoughts, everyone!

Jenna talked to Sam’s surgeon for awhile yesterday.  She liked him, and the nurses have nothing but good things to say about him as well.

Good luck, Sam.  We’re all pulling for you!

 

June 16, 2004

Jenna believes Sam is feeling better.  Mom’s just know these sorts of things.J 

It seems Sam spent the best part of yesterday screaming his head off.   It was supposed to be a great day.  Jenna and Sam were going to learn infant massage together from the physical therapist, but Sam just hated every minute of it.  Go figure.

His nurse was afraid he was in pain.  Jenna thinks he was just hungry, mad, and really really irritated!  Hang on to that attitude, Sam.  Tomorrow your tummy will be full and hopefully you’ll feel better about the whole world.

Today the physical therapist is going to test Sam’s “suck”, and he’ll get to try a few drops of milk from a pacifier.  About time, huh Sam?

Jenna and Mike are scheduled to consult with Sam’s surgeon Friday morning. 

Sam’s surgery is scheduled for next Thursday the 24th of June.  (thanks for catching my typo Trish.)

 

June 15, 2004

Well…  Sam did indeed have an upper GI test yesterday morning.  Urr!  The joy of a barium cocktail.  According to the test, Sam is experiencing moderate to severe reflux.  Hmm.  I think we probably knew that part.  Most importantly, what the test did reveal was that Sam was not aspirating (withdrawing stomach fluids into his lungs).  That was great news.

What the test was not able to reveal was if the reflux was the cause of his continued heart rate drops…. or not, or if his reflux could disappear if the tubes are taken out of his stomach so the flap could close . . . or not.  And sadly, taking the tube out of his stomach is a test that can’t be done.  Sam needs to have food and the only way he can get it is through a tube, and the tube just does interfere with that little flap.

So…  What do we do now?  Well after hours of consultation with Sam’s doctors, Jenna and Mike have scheduled surgery for Sam next Thursday (June 24).  The surgery was scheduled with the presumption that it would be cancelled or postponed if Sam responds well and improves during the upcoming week.

The docs are going to remove Sam’s NJ feeding tube (intestine), and replace it with a NG feeding tube (stomach) on Thursday (June 17).  Then Sam’s primary care nurses are going to piggyback their shifts over the weekend keeping a extra special eye on how Sam responds.

What Sam is forced to deal with is the fact that he can’t eat the proper amount of food with a NJ tube, and he’s not growing well because of it.  He continues to struggle with diarrhea because the food is bypassing his stomach and not being digested properly. The docs believe the surgery will fix all of these problems, and August can still be a goal date for coming home.

The good news is that Jenna is reporting Sam’s respiratory stability has greatly improved over the past week.  Alright, Sam!  Now if only reflux can be dealt with the same way.
 

Grow strong, little man.  We love you!

 

June 14, 2004

News has been scarce the past few days, but Grandma B comes through with a much anticipated weekend report.  Thanks Doris!

Sunday afternoon was another special time for us as we were with Samuel Henry. He was asleep in his Bigboybed when we got there after worshipping with the Jamesons at St. Mark’s in the a.m.

You never know what Sam will be doing these days since he is getting so old I am told.  Saturday when we stopped by he was having a big time swinging is a swing his NICU nurse helped him with. SO CUTE!  Grandpa and I both got to hold him for several hours on Sunday.

Since his monitors were going off several times his nurse decided to do a blood test to see if he needed some, but it turned out okay. Yeah!

This morning they are taking him to radiology for an upper-GI, he gets to try a little barium so his doctor told us. Apparently this is part of the study they are doing today on Sam to see what makes him have difficulties. I am hoping Sam’s parents can tell us more about this. They were able to spend time with friends boating at Rend Lake yesterday afternoon. Good for them!

Please remember Sam in your prayers and will be glad when his tests are behind him. The little guy is such a trooper and just does the best he can.

Lots of Love,

Grandma B

 

June 10, 2004

Well…  Sam’s reflux problem is very serious, and surgery is back as a topic of conversation.  This subject just doesn’t seem to go away. 

So Jenna and Dr. Dreyer had a long conversation yesterday.  It seems that Dr. Dreyer is fine with waiting for two weeks to test Sam’s reflux status, but at that time he believes Sam will probably fail the test and will ultimately need some type of surgery. 

1) Nissen Fundoplication (a Laparoscopic method could also be a consideration). 

In this surgery the physician wraps the upper part of the stomach completely around the esophagus to form a collar-like structure.  The collar then places pressure on the LES (Lower Esophagus Sphincter) and prevents stomach fluids from backing up in to the esophagus.

2) Gastrostomy – a surgical opening through the abdomen into the stomach through which a feeding tube is placed.  There are various methods used requiring differing types of tubes and methods of insertion.  Some are designed to be short term.  Others long term or permanent.

Neither Sam nor his Grandpa are fans of surgery, so I know Sam will be doing all he can in the next two weeks to grow stronger and to get well.  With Sam in such a difficult position, he could certainly use the strength of all our prayers.  I know his Grandpa will be on his knees doing everything he can.

Sam was breathing very well yesterday with only minor problems, and those were blamed on his upset stomach.  Jenna reports that Sam’s poops are still “very icky”, but even though the results are not in yet from his stool culture, they think maybe it’s just a virus that will have to run it’s course because he’s showing no other signs of illness.

Whew!

June 9, 2004

Jenna reports that the BigBoyBed is intended to indeed be permanent!  Sam was getting too warm in the isolette and he needed more external stimulation from the outside world.  So… 

Sam now has a mobile above him of furry colorful insects to watch, and a CD player of classical music keeping him company, stimulating his cultural side, and hopefully blocking out the normal noises of the NICU.  Additionally, Melanie is lending Sam her “aquarium” which bubbles with lights and music so Sam will have action to look at.  Thanks, Mel.

Sam had a pretty good day yesterday.  His oxygen was at 21%, and the flow rate on his Vapotherm was lowered to 2 liters per minute. 

During the day, however, problems arose keeping Sam warm enough in order to ward off a chill.  So Mom, and Sam’s primary care nurse Teresa, solved those issues (it’s amazing how warm and snuggly a baby can get in his mother’s arms).  And together with another bubble bath, a lotion massage, and a hat on his head, Sam was happily listening to classical music when Jenna left for the night.

We do remain a little concerned about Sam’s diarrhea.  A sample of Sam’s stool was taken for lab analysis last night, and it seems that “something” is indeed growing in there.  No answers yet as to what “something” could be.  Sometimes it’s nothing serious, but sometimes it is.  Keep Sam in your prayers.

Have a good day, Sam.  We love you!

 

June 8, 2004

I haven’t heard any updated Sam news just yet, but I thought I would share some new photos I received from Grandma and Grandpa Buesking.  Holding Sam just naturally creates a photo opportunity.  It seems Grandma and Grandpa were called upon for babysitting

duty this past Sunday and eagerly jumped at the chance.  Both Grandma and Grandpa had an opportunity to spend some real quality time with young Samuel, and Sam just loved the whole idea. 

                                                  Aunt Debi sent Sam a new toy duck to play with, and now Sam is even sporting scratchme mittens (finger nails) as well as some new sport socks – gifts from Grandma and Grandpa B.  You’re style’n now, Sam! 

Additionally, I just got this picture from Jenna’s cell phone.  Sam’s in a Bigboybed!  There wasn’t any note or anything with the pic so I can’t tell you if this is a test run or if this is a permanent move.  The little guy definitely has room to grow though. J

Love you, Sam!

 

 

June 6, 2004

Sam received a couple of blood transfusions yesterday that really helped to restore his skin color.  He has also been prescribed an oral diuretic to help him eliminate water and reduce his puffy appearance.  The flow from Sam’s Vaportherm has once again been reduced to 3 liters per minute, while his oxygen levels continue to remain between 28 and 35% – not too bad for the little fella.

Jenna reports that Mike held Sam for a couple of hours yesterday, and Sam liked it so much he filled 4 diapers with poo.  The child has no problems going!  Possibly his change in diet and medication has loosened things up a bit.

Drs. Ken, Jung, and Chaou all talked with Jenna and Mike about Samuel’s reflux and “desat” issues.  None are advocating surgery at this point, and all are very happy to be patient and let Sam do things in his own good time.  Whew!  Sounds like a plan to me!

We love you, Sam.

PS:  Lots of positive comments concerning your bathtub photo-op, Sam.  Look’n good!

 

June 4, 2004

Sam feels much better tonight!  And when Sam feels better we all feel better!  He really seems to do so much better with his feeding tube not in his stomach.  Jenna reports that his O2 saturation is down to 21%.  The Docs gave him a dose of Lacix to remove any excess water weight, and now his discolored and puffy appearance is gone too.  He still has the occasional “desat”, but generally is doing much much better.

Sam’s ophthalmologist has diagnosed Sam with Zone 2 Stage 2 ROP (Retinopathy of Prematurity- an abnormal growth of blood vessels in Sam’s eyes).  Sam will continue to receive eye exams and will be monitored closely.  His next exam is in 2 weeks.

We continue to be concerned about Sam’s lungs.  Jenna was told today by Dr. Young that lung improvement will be difficult for Sam until he can eat normally and grow faster without all this reflux and “desat” business.  But Sam can’t eat normally (at least by mouth) because he may aspirate his food back up into his lungs.  So…  We wait and be patient and let Sam grow some more at his own pace.

The good news is that Sam’s latest brain scan shows healing.  Remember the stage 1 brain bleed that was visible on Sam’s previous brain scans?  Well, the chart now labels it “self-improved” hemorrhage.  Impressive phrase means – it got BETTER!

Jenna and Sam did some kangarooing today, and four pound Samuel, while laying on his stomach, was all about impressing his mother with his ability to push up and move his head from side to side in order to change his viewing position.  Sam may be growing slowly, but he’s growing strong!

Love you, Sam.

 

June 3, 2004

Grandma B reports that Samuel has moved yet one more time and is now located directly opposite the waiting room and right behind a great big o’l window.  Easy to see out, and easy to see in!   Well…  What a birthday present!  When a guy gets to be 10 weeks old and a fairly senior member of the NICU, he should indeed have a room with a view.  Happy 10 week birthday, Sam!!

Jenna reports that Sam has had some setbacks over the past couple of days.  He suffered a lot of heart rate drops and desats yesterday (he was so low at one point he needed to be hand bagged), and consequently at 5 o’clock this morning his feeding tube was removed from his stomach and reinserted into his intestine.  Additionally, the flow on his Vaportherm was increased to 4 liters per minute from 3lpm.  These differences have helped some, but he is still desating on a regular basis. 

The doctors are concerned that Sam is not growing as rapidly as he should, and consequently his lungs are not improving as rapidly as they should.  Sam lost approximately 80 grams last night.  That’s about 4 oz.  So currently Sam weights 3 pounds 13 oz which is less than he weighed 3 days ago.

Additionally, Jenna tells us that two specialists have been called in to assist.  A lung specialist and an upper GI specialist.  They will both come tomorrow to evaluate Sam.  We’re praying these two specialists will do some miracle work and get our little guy to grow.

We love you, and we’re praying for you, Sam!  Grow strong!

 

 

Sam’s Status Journal – May 2004

 

May 30, 2004

Grandchildren have a way of creating “never forget” significant moments. My grandchildren started doing that July 14, 2001. Madison was born and came into this world a very healthy and extremely beautiful little girl. And I was able to hold, kiss, and love her that very morning. Samuel’s first “never forget” significant moment came March 25, 2004. I loved him and my heart ached for him that day, but because he was so very sick, I wasn’t able to hold him or kiss him. That is until YESTERDAY!!!!!

So how does a grandpa hold his 3 pound 12 oz baby grandson for the first time? Fearfully, I think, but Sam and I worked through that part together. He took hold of my hand (thumb actually), and we just loved each other. He’s an amazing young man.

Threats of infection and Sam’s fragile health had prevented some family members from being able to visit Sam inside the NICU.  But Sam was a perfect host this weekend entertaining Aunt Shelly and Uncle Todd as well as cousin Michael for the very first time. 

His feeding tube has been moved from his intestine to his stomach, and Sam seems to be ok with that. He does have a bit of reflux the docs are treating with Prevacid and some rice in his dinner, but get this… It seems that Prevacid absorbs better in the stomach if it is mixed first with chocolate!  So… You folks suffering from heartburn… Maybe a Snickers bar with your Tums…  hmmm… It works for Samuel!  J

Sam’s house moved again last night – closer to the exit! Yeah!!

 

 

May 27, 2004

It may be storming in St. Louis tonight, but the sun is shining for Grandma J.  Linda spent the day at St. John’s with young Samuel, and while she was there Sam’s primary care nurse asked if she might like to hold him for a awhile.  Well…..  This was Linda’s first opportunity to hold Sam so there was no need to ask twice!  Two hours later Linda reluctantly tucked Samuel back into his own bed.  I think they really liked each other!

Sam is working very hard to grow stronger.  His oxygen levels remain good.  His feeding rate is now up to 11cc per hour.  And I’m told tomorrow is the day when his feeding tube will be moved back to his stomach.

Today was a good day for both Sam and for Grandma J!

Good night, Samuel.  We love you!

 

 

May 25, 2004

Sam’s doing pretty well today.  The doctors stopped his caffeine “jolt” yesterday.  They want to see if he can remember to breathe all by himself and not just because he’s a bit “wired”.  Well…  he didn’t have any caffeine yesterday, and none so far today.  And Jenna reports – so far so good!

Sam is using a device called Vapotherm to help him breathe. It provides humidity and a bit of pressure delivered through a two prong nasal cannula.  The pressure on that was reduced today from 4 to 3 liters per minute.

And No diarrhea!!  Sam’s diapers appear normal, while the dreaded “desat” appears to be under control as well.

Sam is even sweet smelling now that he has had his first bubble bath!  Sunday night I guess Sam was coming on a bit strong.  So his nurse decided that a full blown bubble bath was definitely in order.  Now in addition to being the best look’n – Sam is also the sweetest smell’n!

The latest rumor is that maybe tomorrow his feeding tube will be removed from his intestine and placed back into his stomach.  Sam was having a real problem with reflux previously.  Let’s pray that growth, as well as the removal of caffeine from Sam’s diet, will help eliminate that problem.

Grow strong, Samuel.  We love you.

 

 

May 22, 2004

Sam had a very busy week.  He got rid of that old ventilator!  Hurrah!   Grandma J came to visit from Ohio and smashed her hand in the car door.  Ouch!  But Sam helped to sooth Grandma’s boo-boo.

Great Aunt Lu and Great Uncle Gary came to visit from southern Missouri so Sam was able to help celebrate Aunt Lu’s birthday!  Happy birthday Lu!  Melanie and Mark came to visit too.  They were host and hostess for all the visitors as well as picture taker and breakfast maker extraordinaire.  Thanks for everything you guys.  You’re very special, and we love you dearly.

Sam had to put his new clothes away for awhile.  The doctors and nurses need to watch Sam carefully as he transitions from the ventilator to breathing on his own.   His new outfits were sort of in the way of that so off to the drawer they went.

Sam has lost some weight during the transition from ventilator to breathing on his own.  He had gained up to 3 pounds 9 1/2 ounces, but fell back this week to a low of 3 pounds 4 ounces.  It’s hard work this breathing stuff.  But check out out his weight chart above.  He has gained two of those ounces back so let’s hope he’s on his way.

There are new Samuel pictures!  Stop by “Sam May 22nd”, or run the May 22nd  slideshow to see Sam’s latest.  There is also a new clip in “Movie Clips”.  Action and adventure while kangarooing with Mom during a bout of the hiccups. J

We love you, Sam.

 

 

May 19, 2004

Sam struggles with an extremely sore throat following many days on the ventilator, and breathing all by himself has sure burned up a lot of calories.  Breathing continues to be very hard work for Sam, and the extra calorie burn has caused him to lose a couple of ounces.  I guess what you could say is that Sam is tolerating the absence of his ventilator.

The eye doctor came to visit yesterday.  Samuel continues to receive exams for Retinopathy of Prematurity (ROP).  These tests make sure that excessive amounts of oxygen have not caused Sam any eye problems.  And according to the doctor, all is ok!

Although Sam’s lungs remain very fragile, his latest chest x-ray reveals his lungs have improved following his latest infection. 

Diarrhea has returned, however!  Urrr!  As a result, Sam’s feeding rate has once again been reduced to better keep that under control.

The best part of the day was that Samuel and Mom got to hold each other for three hours.  They really like that part.

It was a pretty good day.  Good night, Sam.  We love you!  Happy 8 week birthday!

PS:

And even Grandma J reports that her car door injured left hand also continues to improve.  We love you too, Grandma!

 

 

May 16, 2004

It looks like Sam may have beaten back his tracheal infection.  His latest culture came back completely negative, and the docs have taken him off antibiotics altogether. 

So…  this afternoon about 5 o’clock the doctors removed Sam’s ventilator and at the same time they removed the IV from Sam’s head!  Yeah!!! 

According to Grandma J’s report this evening, Sam is doing “fair” breathing on his own.  I guess that means that after all this time, Sam has become accustomed to the machine helping him, and it’s difficult and hard work for him to breathe on his own.  We certainly pray he can continue, but as his nurse pointed out, if he needs to go back on the ventilator at least it would be new and sterile.  They’re blaming the tracheal infection he just got over on the old ventilator tubing he had been using for so long.

It’s been a pretty good day all around for young Samuel.  I really like the no needle in the head part!  And since Grandma Buesking provided him with suitable attire, I’m told Sam is the best dressed baby in the NICU!  Way to go Grandma B.

Grandma J, however, is on the mend.  It seems she had a mishap with her hand and a car door this morning and required some medical attention herself.  Nothing is broken, but painful nonetheless and will require a bit of time to heal.  Hmm.  Driving in St. Louis with one hand…  I love you, honey.  Be careful!

 

 

May 15, 2004

Well Sam sure had a tough few days there, but now the docs are using phrases like “he has now turned the corner”.  Great to hear!  And Sam’s heart rate didn’t drop during his one and only “desat” yesterday.

We have some clarification on that “so-called” lung infection.  Turns out is was a “colonization of bacteria” in  Sam’s trachea (the air passage to Sam’s lungs).  That’s one of the reasons the doctors were working so hard was to try and prevent the bacteria from migrating into his lungs.  For Sam, a lung infection could have been extremely serious.

A disturbing report is that Sam’s tiny little veins are just not standing up well to all the medicine that is being pushed through them.  Consequently his IV had to be moved yet one more time back to his head.

But on a brighter note, his diarrhea is under control, his feeding rate has been increased to 9cc per hour, and there has even been rumors reported that if all continues to improve, Sam’s ventilator may be removed as early as Tuesday.  (the doctors will do it this time, Sam)

Well…   Hasn’t this just been a roller coaster past few days?  Whew!

We’re all so happy you’re feeling better, Samuel.  Now if we could just do something about those needles!  Urr!

Good night, Sam.  Time to rest and get strong.

 

May 13, 2004

Sam is a very sick little boy tonight.  The lung infection he has been trying to fight off the past few days refuses to die.  And Sam is wearing down.  The medical experts are not too terribly concerned at this point, but Sam’s Grandpa, and for sure Sam’s Mom, are very concerned. 

Samuel experienced serious “turn blue” desat breathing episodes today that he did not recover from very quickly.  Possible mis-placement of his breathing tube, or maybe bronchial spasms could have been the culprit.  These types of  events haven’t occurred for quite some time so naturally we’re all very concerned. 

In addition to the infection, Jenna reports that poor Sam is having to deal with a mighty case of diarrhea as well.  No one is sure if the diarrhea is the result of his new antibiotic medicine, or maybe his feeding rate increase, or quite possibly Jenna’s latest craving for White Castle “sliders”.  In any event, the docs have cut back his feeding rate to 8cc per hour to see if that will bring the diarrhea under control.

And if all that was not enough, Sam’s IV port turned red and swollen and had to be moved from his head to his hand.  Yet again – one more needle stick!

Sam is certainly in a tough spot tonight, and needs the strength of all our prayers. 

Good night, Sam.  We love you, and we’re all praying for you. 

 

 

May 12, 2004

It looks like this lung bug Sam caught is a real bugger.  Word is the infection is no better than it was 7 days ago.  Urrr!  So the docs got their heads together yesterday and decided to add a new medicine to young Samuel’s regimen.  With two antibiotics working together, good news could possibly happen as early as tomorrow.  Maybe a couple of days for us realistic folks.

Jenna and Sam had another 3 hour kangaroo session yesterday.  It seems the young man just likes being next to his Mom – a lot!  The NICU nurses accuse them of loving each other.  Ahhh.  It’s pretty easy though, isn’t it Sam?  I know.  I’ve loved your mom for years.

As I write this, the unofficial rumor is that Sam has gained an oz.  He’s up to 3 pounds 4 oz.  They’ve cranked up his feeding rate again too.  He is now eating 10cc continuously every hour.  He should be beefing up again any time now.  And he’ll surely need all his strength, because physical therapy on his left arm and leg has started up again.  Oh they’re just relentless, aren’t they Sam?

Sam has 4 primary care nurses now too!  These extraordinarily gifted people have volunteered to work exclusively with Sam.  2 during the daytime hours and 2 at night.  It’s great to know Samuel is in such good hands.

Good night, Sam.  We love you!

 

 

May 11, 2004

Jenna fills us in on Sam’s current condition:

Well, Sam lost some weight today.  He’s down to 3 pounds 1 oz.  His primary care nurse, Jayne, says this is to be expected and is nothing to worry about because he’s received 4 blood transfusions in the past 5 days. 

Because he has received this extra volume, he’s been given Lasix treatments.  Lasix is a drug that acts as a diuretic causing him to lose a lot of water weight.  Jayne believes the 3.3 weight gain was “unnatural” due to the transfusions.  The doctors didn’t immediately follow the first transfusion with Lasix because they wanted to see if Sam would get rid of the fluid himself.  He didn’t.  So then the Lasix treatment was started and that’s why we’ve seen Sam’s weight decline.. 

Sam received another IV today because he blew the vein in his foot.  This one is on the right side of his head.  it took two nurses and about an hour to find the vein.  Let’s hope this is the last infection he needs to fight for awhile.  He’s running out of places for the IV. 

We won’t know whether he’s licked the tracheal infection until Wednesday.  That’s when the culture they took this morning will be ready.  So far, all of his cultures have come back positive.  This is quite the bugger of an infection, and they upped his dose of antibiotics today.

He is looking very good.  And he kangaroo’d so well today that we stayed at it for 3 hours. 

He’s starting to have definite times of waking and sleeping.  When he’s awake, he’s very alert for about 20 minutes to a half hour and loves to stare at his “Mr. Giraffe” and hold onto the toy’s horn. 

I talked to Dr. Ken Klesch for about a half hour yesterday.  He’s on for the rest of the week and was discussing the plan for Sam.  They are comfortable with Sam’s stability, but believe Sam won’t get any better until he’s off the vent.  The vent tube is causing irritation and inflammation that can’t be eradicated until it’s removed.  The question is how to do that.  They’re talking about steroids again but seem very concerned with the neurological and other side affects.  It might be they decide to do a forced extubation.  This will be a very exciting week for Sam and I believe it will be either very very good or very very disappointing.

A recent echo cardiogram showed that the heart problem we talked about previously has already fixed itself.  Yea!  However, a new heart problem has emerged.  There is a possibility that Sam has a small hole in his heart (more precisely some “flap” might not be completely closed).  This problem would require surgery if it doesn’t fix itself.   The doc wasn’t concerned about it at this time though, and says it’s doing absolutely no harm to Sam.
 
I think that’s it.  it all boils down to his lungs.

 

 

May 10, 2004

Things have been fairly stable with Sam the last couple of days.  Not a lot of information to report.  His vital signs are remaining fairly constant.  But if you notice his weight chart, he has leveled off a bit, and not adding weight like he has been previously.  Basically 3 pounds 3 oz for the last few days.  Hmm.

Jenna and Mike got new picture cell phones!  This will be great in keeping us all up to date.

 

 

 

May 6, 2004

Well OK!  No more canned dinners for Sam.  Young Samuel is putting away 9.5cc every hour exclusively from Mom.  I’m told we’re even keeping a ready supply in the hospital freezer.

Sam’s oxygen percentage is up a bit today, but his carbon dioxide level is so low they’re running blood tests just to verify the machines are not telling lies.

And Jenna had an appointment with her doctor today. She got a clean bill of health.  Finally!!  Yeah!!

 

And how about this folks…   Happy 6 week birthday today, Sam!

 

 

May 5, 2004

No surprises.  Humm!   Didn’t last very long, did it?  It seems the culture came back positive so Samuel does have a lung infection.  Most likely as a result of the ventilator tubing.  So…  Sam needed to have his IV re-inserted in his right hand, and a new round of antibiotics have begun.  I guess the medicine he was just on to combat the staff infection was the wrong kind to kill lung germs?  Something about positive vs. negative bacteria?  Anyway the poor little guy is in for another bout with the needle.

Guess what?  Sam was able to clog up his feeding tube again.  No one can figure out how he does this.  They even tried flushing it with CocaCola to see if that would un-clog the thing.  No luck.  Consequently, they had to pull the old one out and re-install a new one.  This is the tube that runs from his nose all the way through his stomach down into his intestine.  This takes a few hours to do.  They push the tube a little, take an x-ray to make sure it’s in the right place, and then they push a little more, …  A long wait for dinner again, little guy.

Speaking of Sam’s dinner.  Some low-life swiped Sam’s dinner!  Jenna and Mike found this great house to stay at only about 10 minutes from the hospital.  It’s sort of a community house where folks with sick children can stay free of charge while their child is in the hospital.  A really great deal.  Well…Jenna had just pumped 4 oz of breast milk for Sam and placed it in the community refrigerator.  And somebody swiped it!  They left Jenna’s apple, but took Sam’s dinner!  Urrrr!

A tough time, huh Sam?  And now your dinner has to come out of a can.

Hang in there Sam.  We love you.  Mom promises to make more!

 

 

May 4, 2004

Samuel once again is needle free!  After his final round of antibiotics yesterday, all the needles came out!  Yeah!!  If you can believe it, however, there is a possible lung infection lurking. The lab tests so far are inconclusive.

Sam received a visit from an eye doctor today.  Premature babies, especially babies more than 12 weeks premature, may develop an eye disease called Retinopathy of Prematurity (ROP).  It’s an abnormal growth of blood vessels in the babies eyes.  Excessive use of oxygen may cause this problem, so Sam is being carefully monitored and examined.  The results of Sam’s exam was -> A-OK!

Jenna reports the best news this evening is that even though Sam remains on the ventilator, his support has been reduced.  Samuel is producing about 60 breaths per minute, but only 24 of those is a result of the ventilator.  He continually “breathes over” the ventilator unless afflicted by the hiccup malady.

And even with all of Samuel’s challenges, according to the charts he continues to grow normally.

Wow.  A day without surprises.  A really good day.

Love you, Sam.

 

 

May 3, 2004

I wouldn’t go so far as to call young Samuel pudgy, but…  3 pounds 1 ounceYeah!!  – a very impressive mile stone I would say.

No additional news to report.  We’ll just have to be content with “his plumpishness’s” numbers.

Way to go, Sam!

 

 

 

May 2, 2004

Freedom!  Freedom!  That was Jenna’s rally cry as the nurse removed the IV from her arm yesterday. It could have been used as a sound over for the movie Braveheart!  Five days of IVs.  A good number of those days were pretty rough –  before as well as after her surgery.  But Jenna is feeling a lot better now, and she was discharged from St. John’s yesterday afternoon.

Sam is doing pretty good too.  He is still on the ventilator, and it currently remains in its proper place thanks to the IV mitten he now sports on his right hand.  In addition to protecting the IV port, it also acts as a very good “anti-yank” device.

Sam has a movie clip page now.  Granted – having one’s shorts changed is not a very exciting movie subject, but everyone has to start somewhere – don’t they?.

 

Sam’s Status Journal – April 2004

 

April 30, 2004

Jenna’s doing much better today.  It’s amazing what a shower and shampoo will do for a person after a couple of days in the hospital.  She’s been

napping on and off most of the day and gradually getting her strength back. She does remain on a precautionary antibiotic regimen, however,  just in case. 

 

 

Sam, on the other hand, has been VERY busy today.  It seems at about 1:30 this afternoon, he decided that not only didn’t he need his feeding tube anymore, but he didn’t need his ventilator anymore either!  Hmm.  Maybe it’s the chocolate Prevacid, or maybe the caffeine cocktail.  Anyway, he yanked them both out this time.  Well… the docs let him get away with it before, but this time they put his tubes right back in.

 

 

Samuel had been sporting an IV port above his left ear just in case it would ever be required.  Urrr!  That has now been removed and is currently installed in his hand with a large wrapping around it.  A bit more challenging for a young man to yank with no doubt.

We all prayed for less eventful.  We’re getting there!  Let’s try that again.

April 29, 2004

Jenna’s night was not as good as her evening.  Early this morning Jenna experienced extreme cramping and pain followed by a good deal of blood loss.  She described the pain as significantly greater than child birth. 

Mike had spent the night in Jenna’s room last evening which, as it turned out, was exactly the right place to be.  He took charge and rounded up the necessary help.  With some medical assistance and vast quantities of pain relief medicine, Jenna began recovering from yet one more trauma.

Her current condition is better.  The pain is better and the blood loss appears to be under control, but she continues to receive IV antibiotic treatment.  She ate a good dinner and was settling down for hopefully a good night’s rest when we left this evening. 

Last night Sam’s feeding tube clogged up, and had to be removed from his intestine.  As a test, a new tube was run only to Sam’s stomach for most of the day.  It was determined, however, that Sam’s reflux problem was not going to allow that method of feeding to continue.  Consequently, a new intestinal tube was inserted tonight.  Sam’s vital signs have since improved and he is now resting more comfortably as well.

Whew, what a day!  Let’s pray for a less eventful day tomorrow.

 

 

April 28, 2004

Well the decision was made last night that this morning Jenna would undergo yet another D & C (Dilatation And Curettage).  The docs determined that there was some remaining placenta that had not been completely removed after Sam was born, and it was causing the cramping, leg, and back pain Jenna was experiencing.

The procedure was performed this morning at about 8:30, and Jenna is currently recovering at St. John’s.  There are still some pathology reports that need to be reviewed, but her spirits seem high and she tells me she has NO pain.  Hmm.  Good pills I think.

Young Samuel is resting comfortably.  His nurse tells us that Sam knew Mom was having a bad day so he decided he needed to be on his best behavior today.  All of his vital signs were very stable this afternoon while we were with him and he looked very peaceful and comfortable while sleeping.  Mike got to hold him for a couple of hours today, and when we left the hospital Sam was all tucked in for the night.

As a side note, Sam is really chowing down now at 8ml per hour continuous.  He’s starting to develop a little round baby tummy, and his current weight is up to 2 pounds 12.5 oz.

Checkout “Sam April 28” for a few new snapshots.

April 27, 2004

The disturbing news this evening is that Sam’s mom is in the hospital.  Jenna has been having some very severe stomach pains off and on ever since Samuel was born.  For the past 3 nights or so the pains have become even more intense.  This morning she found herself in the emergency room of St. John’s Mercy Medical Center, and this afternoon she was admitted.

She has IVs running, and she tells me that many gallons of blood have been drawn for lab tests.  The codeine, however, is keeping her spirits up. 

No decisions have been made yet this evening as to her diagnosis, or as to a plan of action.  Tomorrow we’ll know more after the docs do additional tests.

Dr. Ken tells us that Sam’s staff infection is “not something to get scared about”.  Whew!  Jenna tells me that it’s localized, or something about clusters, or… she wasn’t too clear.  Anyway we shouldn’t be scared about it because the docs are going to get it!

Additionally, it seems poor baby Sam has an IV needle in his head again.  They just couldn’t find a good vein for his medicine anywhere else. 

Otherwise he seems to be doing ok.  Good oxygen numbers, but he will probably stay on the ventilator for a while yet.  No more iron man stuff.  Instead of putting on weight and growing, he was burning up all his calories just trying to breathe.  So the plan is to help him out with that part for a while so he can grow.

Both mom and son could sure use your prayers tonight.

April 26, 2004

My reporter this evening (Aunt Vic) tells us that Sam’s oxygen levels are down (that’s good) and his O2 saturation levels are up (that’s good too).  Sam remains on the ventilator which is giving him some much needed rest, and Aunt Vic reports that he is “really” cute and looks very peaceful.  She knows this because Uncle John was able to successfully play the “but I’m his Pastor” card at the NICU yesterday finagling himself as well as Aunt Vic a free pass to Sam’s bedside for a short visit.

A concern, however, is that Sam has developed a staff infection that is currently being treated with antibiotics.  Samuel doesn’t seem to have a fever though, and his other vital signs appear normal.  Jenna says Sam was very active today while she was holding him, so hopefully they are on the way to knocking this bug out before it can do any harm.

Good night, Sam.  We’re all praying for you.

April 25, 2004

About 2:30 yesterday afternoon, Sam needed to go back on the VIP ventilator.  Poor Sam was having such a difficult time breathing, that the doctors felt he was just too tired to continue fighting all by himself.  Chest x-rays confirmed that Samuel was not expanding his lungs as much as he was the day before, and they believe he needs time to rest and build up his strength. 

All of his other vital signs appear to be normal, but they did draw some blood in order to test for any infection.  No antibiotics have been administered so that bullet may have been dodged.

Sam’s nurses continue to emphasize that this sort of thing is common in babies Sam’s age.  The truth of that makes it no less difficult for Grandpa (or anyone else for that matter).

Keep fight’n little man!

April 24, 2004

Samuel is still fighting his reflux problem.  In an attempt to curb this problem, Sam’s feeding tube that did run from his nose to his stomach has now been moved further down into his intestine.

We did receive some disturbing news yesterday.  It seems the wall of Sam’s left ventricle has thickened.  This could have been from high blood pressure that causes excess work for the heart and leads to the slight thickening of the heart muscle.  The doctors are watching this closely.  We were told, however, that Sam may very well grow out of this.  That is certainly our prayer.

On a more positive note, however.  The results of Samuel’s brain scan are in, and everything is OK!

Have a good day, Samuel.  Our prayers are with you.

 

April 23, 2004

Both of my reporters (Grandma B and Mother Jenna) as well as Grandma J, when she heard the news, seem to be totally taken with the fact that young Samuel has progressed to the next size diaper!  Even primary care nurse – Jayne – says this is much better because “…it doesn’t bind his bikini area”.  Well…  It has never been my experience that the need for a larger size in “shorts” was ever associated with a young man’s bikini area!  I will, however, whole heartedly agree that elimination of “binding” is always a blessing. 

 

Jenna reports that Samuel has had another brain scan and we anxiously await the results.  His feeding rate has been increased from 3cc per hour to 4, and Jenna is thrilled to report that she was able to contribute 3.5 of that 4 at Sam’s 10 o’clock feeding yesterday.  Hopefully this will go along way in helping to solve Sam’s reflux problems. 

 

Sam’s occupational therapist reports that Sam’s left elbow has improved dramatically, but she did point out some tightness in his left hip and knee.  As a result, mom and dad have been directed to provide leg therapy during their kangaroo sessions. 

Sam continues to wear the CPAP.  It helps with his breathing, and I’m told he is now becoming very aware of his surroundings.  He loves to gaze with big wide bright eyes at Jenna when she is holding him, at his nurse as she moves about his incubator, and even at his CPAP tubing although focusing on that stuff does cause his eyes to cross.

Quite a day, Sam!  We love you!  

 

 

April 21, 2004

The day didn’t start out very well for Sam.  Jenna explains that Sam was having way too many heart “desats” (the percentage of oxygen saturation in his blood decreases caused by Samuel not breathing as often as he should) in the early morning hours. 

I really need to get her to define that term “destat” for me (an anonymous donor corrected and defined the term – “destat” should have been “desat” – thank you!). 

Anyway what happens is Sam quits breathing and needs to be externally stimulated by someone in order to start breathing again.  It was getting so frequent and becoming so serious that the doctors were considering placing him back on a ventilator. 

Dr. Dreyer instead ordered Sam’s feedings stopped just to see if it could possibly be reflux that was actually causing the problem.  Well… between 8:30 and noon, Sam had only 2 “desats” indicating reflux and not lung issues as the culprit.  They took some chest x-rays just to make sure and they looked good – no inflammation and good lung volume.  So now Sam is on reflux medication – hmm – just like Grandma J. 

He did pick up an IV needle in his right arm though – ouch!, and his meals are limited to 3cc per hour instead of the 6 he was receiving.  Looks like slim down time for a while, Sam.

So… This evening Sam and Mom are both doing much better.  Sam slept all day and Mom was in bed by 9:00pm.  Both getting some much needed rest.

 

 

April 20, 2004

Sam appears to be maintaining.  According to the NICU nurse, Samuel’s condition has remained pretty much the same over the last couple of days.  He does continue to wear the CPAP device to assist his breathing.  His latest x-rays indicate no lung inflammation, and his weight continues on the increase.  Up to 2 pounds 6 oz today.  Atta boy Sam!

 

Samuel now has his own email address!  Anyone that would like to drop Sam a personal note can reach this young man at:  Samuel@LindaAndKeith.com

I know he would love to hear from everyone.

Good night, Sam.  We love you!

 

April 18, 2004

Samuel had a difficult day today.  In addition to his daily increase in caffeine, Sam also received some rice mixed in with his formula in an attempt to curb his reflux problem.

 

But possibly as a result of those dietary changes poor Sam had a diaper explosion about noon today that rated exclamations from all on-lookers. 

And at about 1:30 this afternoon, it was necessary for Sam to go back on the CPAP (Continuous Positive Airway Pressure) device.  He was just having too many episodes of forgetting to breathe, and the doctor felt that it would be prudent to assist his breathing for a while. 

As a result of the CPAP and according to dad Mike, Samuel has had only one forgetting to breathe episode this afternoon and evening.  Good deal!  Get some rest little man.  We love you!

 

April 17, 2004

It seems Sam is getting his morning coffee now all day long.  A bit of a Jolt as it were.  The doctors have increased his feedings to 6.5 ml per hour (continuous), and have mixed in some caffeine just to spice up a normally dull meal.

With all that’s going on sometimes he forgets to breathe.  That gets him, Mom and Dad, as well as grandma and grandpa pretty excited.  But the nurse tells us this happens with babies Sam’s age and just pats his back or touches his forehead and he’s back breathing again.

I’m told that babies do not really learn how to breathe, suck, and swallow all at the same time until about 34 weeks of gestation.  So Sam has to be a quick study and pick this stuff up all at once.  So…  A little caffeine to help him “pay attention”.  A little NoDoze for the wee one.

Sam has NO needles!  There is a nose tube to his stomach for feeding, and one of those oxygen nose things to help him breathe, but NO needles!  Yea!  All the other wires and things are just for monitoring.

Sam and his new friends (he has a new giraffe as well as a “God Bless Baby” angel) were all tucked in and resting comfortably when Linda and I left last night.

 

April 15, 2004

Grandma Buesking is reporting that Samuel is “on the move”.  He’s been moved closer to the nurses station.  And this is a good thing!  As the young ones improve, they are moved further and further away from “the wall”.  She tells us that Sam is really moving his body around a lot more now and stays awake longer.  Yea, Sam!

Doris and Art were able to attend a class last evening at the hospital where they learned more about premature babies.  This hospital is truly a marvel.

Jenna got a new hair do.  Both mom and son are looking good!

 

 

April 13, 2004 – Continued!

Well it seems we have some news to share!  Young Samuel, at about 4:30 this morning decided that enough was enough and self-extubated himself from the ventilator (he yanked the thing out!).  Well that’s a pretty scary thought, isn’t it?  The little guy had just had about enough of that hose!  It seems it was ok though because the doctors decided not to put it back.  He is now using a CPAP (Continuous Positive Airway Pressure) device that is non-intrusive, and he is doing just fine breathing on his own.

Jenna was able to hold Samuel again today.  Some more of that kangaroo therapy.  They really like that part.

 

 

April 13, 2004

Good Morning, Sam! 

Linda spoke with the NICU nurse last evening, and at that time Sam was pretty much the same.  He’s still on the ventilator. They’re a little concerned that he is not trying to breathe more on his his own.  As a result they have to keep adjusting his oxygen percentage which I guess they would rather not do.  We didn’t get any news about his latest chest xray so we need to follow up on that.  They had to put the IV back in his head. I guess he keeps blowing his little tiny veins in his foot and leg and they needed a more stable place for his medicine.  No other news – except he needed to have another ENEMA!!! Urrrr! Poor little fella.

We’re praying for you, Samuel !

 

 

April 11, 2004

Happy Easter, Sam!  Jenna tells us that Sam is looking very “Eastery” this morning.  An Easter egg from the NICU support group adorns his incubator, while a sweet someone has placed an Easter basket inside the incubator with him.  Thank you everyone!

Sam is still struggling with his breathing and remains on the ventilator.  He’s going to have another chest xray today to look at his lungs.  But check out his weight.  He’s back to his birth weight today!  It must be all that great hospital food, huh Samuel?

 

 

April 10, 2004

I wasn’t able to be with Sam this past week, but Linda was there with her camera so please stop by Sam’s April 5th photo gallery to say hello.

Sam had to fight harder this week.  He had been doing so well that his ventilator had been removed the week before.  Everyday had seen an improvement, so I was not prepared when Linda called and told me Sam had been having great difficulty breathing and was back on the ventilator.  There didn’t seem to be a definitive reason why. The nurse told Linda that premature babies sometimes just get tired and need some help, and we should prepare ourselves for this sort of thing to happen again.  Additionally, there had been problems establishing a good IV line in his leg so he needed to have one put in his head!  The poor little guy.  It’s now removed, but you will be able to see it in the April 5th photo gallery.  As of last night, Sam is resting comfortably.  Still on the ventilator, but his color is much improved.  He’s still receiving some antibiotic medicine as a precaution against infection.  And check out his weight – over 2 pounds again!

 

 

April 1, 2004

Hey – they removed Sam’s ventilator today!!  They are using something called a CPAP (Continuous Positive Airway Pressure). I guess it’s a nose thing – maybe like breathing into a strong wind.

God love him. He’s just amazing. He’s even holding a pacifier by himself – I’m told). We drove to Mt. Vernon yesterday and picked up Rusty dog. We’ll be “baby sitting” the dog while Sam works his way through St. Johns. Linda will be going back next week so we’ll have to rely on her for “up to the minute” late breaking developments. J

I’m trying not to get too excited – Sam is still so very fragile, but … Wow!