Big Gus

Gus Ridin' Diaper-dey

2008-12-07T07:28:00.001-05:00

Gus and I like to ride around the Cleveland duplex on our bikes. We weren't sure if this would still be possible with our new bike - the Kona Ute - but we gave it a try...

Gus' first modeling job

2008-12-04T11:56:00.004-05:00

Here is Gus modeling the new United Church of Christ "God is Still Speaking" rainbow t-shirt. His first catalog shoot...

A Holiday Dance Greeting

2008-12-02T19:27:00.001-05:00

Send your own ElfYourself eCards

Gus and the monkeys

2008-11-29T23:14:00.001-05:00

Gus had just fallen off the bed and bit his tongue - lots of blood oozing out of his mouth as dad tried to calm him down.

It was a great time to sing "no more monkeys jumping on the bed"...

Gus scoots

2008-10-22T23:19:00.001-04:00

Gus took an interest in his older siblings' scooters this week.

A video:

And a still shot:

Daycare - 80s Day!

2008-08-28T09:26:00.003-04:00

OK - when I think of the 80s I think of Sid Vicious, Joe Strummer, Patty Smythe, and Jello Biafra. Punks in their day.

So when 80s day came around at Gus' daycare I couldn't help but give tribute to these legends of rock. A t-shirt with cut-off sleeves and enough hair gel to build a bridge and viola...

Gus may not have been as pleased as I was...

He sure was a good sport though!

Gregg

Running with Gus!

2008-04-16T22:11:00.001-04:00

Click this link to see a most excellent video of Gus running!!!

http://ecards.marchforbabies.org/RX6A0D

Almost Two (Nothing Run's Like a Deere...)

2008-02-25T21:45:00.002-05:00

Gus' grandparents in North Dakota sent him a John Deere hat and a potty-training book for his second birthday. The hat and book were both great fun tonight!

It is really hard to believe this great little guy will be two tomorrow! We are so blessed!

Peace,
Gregg, Jill and Gus

Gus Wails

2008-01-25T21:22:00.000-05:00

"I got the low down poopy pants blues... Oh yeah!"

Gus took driving lessons from his Uncle Todd...

2008-01-24T19:25:00.000-05:00

"Sure I can talk - I'm just driving..."

"I'll send a quick text message..."

"Man those keys are small - glad I can drive with my knees!"

"I am so busted!"

Gus on TV (again)

2007-11-13T23:21:00.001-05:00

Jill and Gus were at the March of Dimes prematurity awareness day at our March of Dimes branch and were once again interviewed for Dayton's Local 12 (WDTN) news.

Click the link below to see the video...

Here is A LINK to the report on the station's website.

Gus continues to be an inspiration to us all thanks to your many prayers and the efforts of the March of Dimes!

Peace,
Gregg

Gus' First Haircut

2007-10-11T20:21:00.000-04:00

Gus had his first haircut last Friday. He seemed to like it well enough - hair in the eyes and the electric trimmer weren't so fun though!

OK, not so bad...

I'm thinking this will be pretty good.

Hey - watch the eyes!

Not the electric clippers!

Looking sharp!

Tubes and Walking

2007-09-27T12:16:00.000-04:00

Gus had ear tubes put in on 9/26/07 - everything went really well and by the evening he was back to his funny self. He is now 33 inches long and 22lbs 8oz! Such a big boy!

Here are some quick videos of Gus taking his first steps...

Peace,
Gregg, Jill and Gus

Gus Likes to Dance

2007-08-08T19:48:00.000-04:00

Any music will do! Here he is with his "ABC Ball"...

And drive his "car"...

Videos - June 10, 2007

2007-06-14T21:08:00.000-04:00

June 10 was Gus' real due date - so these videos were taken on his "adjusted" first birthday. We will obviously continue to celebrate his real birthday, February 26, but this is a milestone year for him...

Eating with a Fork

Giggle Crazy!

Gus is Home

2007-06-13T20:29:00.000-04:00

After a day at Children's of Dayton, Gus is home. Needless to say, Jill's night was not very restful... Gus was discharged at 5:00pm this evening (6/13/07) and is now sleeping well. We were told to keep him in as cold of an environment as is possible. We put the pack-n-play in the basement and have turned the AC way down. He seems happy as usual, a little rattling cough, but not nearly as heavy as last night.

Thanks for the comments and prayers!

Blessings,
Gregg, Jill and Gus

Gus @ Dayton Children's Hospital

2007-06-13T09:05:00.001-04:00

Image016.jpg
Originally uploaded by Gregg Brekke.

Here is a phone photo of Gus sleeping at Children's Hospital in Dayton on 6/12/07. He had a barking cough - it was croup with stridor. For any other kid it would be a cold. Many preemies are especially prone to croup/stridor because of the scarring done to their throats by being intubated.

We arrived at the emergency room around 6:15pm and Gus was finally admitted to a room around midnight after a few breathing treatments and a dose of long-lasting steroid. Jill and Gus stayed the night and Gus is up now (8:30am) eating and feeling OK. They will administer more breathing treatments to clear up his airway and watch through the day. If all goes well he will be home this afternoon...

Peace,
Gregg

Too quiet...

2007-05-17T11:54:00.000-04:00

Proving that when kids are playing nicely on their own and it is very quite – something is up… Diaper wipes this time!

March of Dimes Walk - Kenosha, WI

2007-05-14T11:04:00.000-04:00

March of Dimes Walk - Dayton, OH

2007-05-14T10:42:00.000-04:00

Little Video

2007-05-10T22:34:00.000-04:00

Here is a quick "flash" video of Gus crawling around and standing up...

13 Months and March of Dimes!

2007-04-10T19:05:00.000-04:00

We have once again organized "Team Gus" for the March of Dimes. There is a link to the right or you can click HERE too. Our local walk is at Wright State University in Dayton, OH but this year you can sign up to walk for Team Gus ANYWHERE there is a walk! Very cool.

Gus LOVES the camera and is rarely without a smile when it is pointed at him...

Here is Gus crawling around at our friends home. His tractor book goes with him a lot. He pushes it to where he wants to be then crawls to that place.

Gus continues to do well at his developmental assessments - today the county's "Help Me Grow" program came out and Gus has met or exceeded all of his targets at this stage. He is crawling really well now and likes to babble a lot. He mimics sounds like "hi" and "ba" and will sing/shout when sung to.

No official height and weight recently but we think he is about 20 lbs and 30 inches long.

Peace,
Gregg, Jill and Gus

ONE YEAR OLD!!!

2007-02-26T21:45:00.000-05:00

Well, the day in here that seemed so impossible a year ago! Gus has turned ONE!!! When he was born the doctor said "his condition is very grim" and indications were that he may not live past his first 24 hours. Then it was 48. Then one week. Then his first surgery. And so it goes - 365 wonderful days later he has beaten the odds and blessed us amazingly. We acknowledge that Gus would not be here without the dedication, expertise, love and prayers of so many people. Family, friends, doctors, nurses and a fair share of complete strangers who came to know and carry "Big Gus" in their hearts through his blog.

Happy Birthday Boy Gus - most usually with a smile on his face and a mission! Here we were playing chase around the kitchen island. He is a pretty fast crawler and is a good sport about having his picture taken as we scoot around.

A few pictures of Gus in the chair that was mine any my sister's when we were kids.

(Correction, this is MY chair. My grandmother had given me and my sister each one. Hers is still in North Dakota...)

The solemn pose...

Mr. Bright Eyes.

with giggles... You can sort of see his tooth that is poking through on the bottom!

Gus and his beautiful mommy - Jill. We were reminiscing that we got more sleep last night than the night before Gus arrived. I'm glad not to be sleeping on one of the hospital's chair/sleeper contraptions tonight!!!

Thank you all for continuing to follow Gus' miraculous life. We are again organizing "Team Gus" for the March of Dimes WalkAmerica this year so details will be coming.

We haven't had an official weight and length in a big but we will get one tomorrow at Gus' one year check-up. We're guessing he is somewhere between 18 and 19 pounds (8.1-8.6kg) and around 28-29 inches (71-74cm)long. He is catching up and healthy in every way.

Peace,
Gregg, Jill and Gus

New Year - New Fun

2007-01-09T18:33:00.000-05:00

Happy 2007 to all our dear friends and family! A quick update from the Holidays until now... Gus is now 16.5 pounds and around 28" long. He loves to bounce and babble and giggle. It is rare to find him without a smile on his face, even when he wakes up in the morning!

As you can see Gus loves his oatmeal and fruit! He enjoys any vegetable - mixed is his favorite - and most fruits. He still isn't crazy about meat but friend Janie B assures us she'll teach us how to cook with tofu if needed!

Gus (and Gregg) love to do acrobatics. Here Gus is practicing his "look at me balance on Daddy's hand" trick. It freaks Jill out a little and almost every other mother out there - but Gus grins from ear to ear and loves to show of his new skills.

Santa's Little Helper in one of his many Christmas outfits received from friends. Thanks to all - Gus did get to wear each of them at least once...

Paper, paper, paper! Oh, there are presents too?

Gus really loved the process of ripping paper and trying to get it into his mouth. He enjoys all his toys - lots of pounding, sorting, learning and singing going on in the house right now.

As Gus' one year birthday approaches in only six weeks we are thankful for the great progress he has made. Other than taking a few extra months to catch up developmentally (weight and length) he has no other noted physical or mental problems at this point. He is on track with the social/physical development of a eight-month old so continues to progress toward his "real age" against this adjusted age. We know we are blessed to have Gus doing so well and attribute it to the great faith and love of our many friends and family.

Grateful for each day,
Gregg, Jill and Gus

Thankful!

2006-11-20T23:13:00.000-05:00

This Thanksgiving is truly a time of thanks and joy at our home! The miracle of Gus this year - his continued growth, progress and wonder - are a blessing and gift! It is hard not to enter this holiday season with full hearts for all of the prayers, love and support given to our family this year. To everyone - we are thankful!

Gus continues to amaze everyone and as his doctors this month put it, "it's nothing short of miraculous". He loves to Jabber and tell lots of stories, chew anything (no teeth yet, though), smile and play. He loves to roll from his back to his belly and can't wait to crawl. He started sitting up a few weeks ago - still a little wobbly but he loves the new vantage point. He is full of giggles and is a very smiley guy. It's wonderful to hear him wake up in the morning (after 8 to 11 hours of sleep) talking away to his mobile of bears and then greet you with a big smile. He's started solid foods and just recently taken off with enjoying the sensation of eating. In keeping with the Thanksgiving theme we introduced sweet potatoes and he devoured them. He may look like his dad but luckily he picked up my love of squash and sweet potatoes! We're having fun...

Here is Gus with his Grandma Susie last weekend. She joined us from Maine for the weekend and Gus couldn't get enough of her. All she had to do was smile at him and say hello and he'd break out into belly laughs. It was a wonderful visit ...We're still smiling.

Big Gus is now 15 pounds and over 24.5 inches long - about the same height as his new teddy bear from the Graham Company (thank you!). As you can tell from the smile, he is a pretty loved little man.

Gregg took this picture a week ago and it shows Gus at rest, just contemplating the world (or what next to stick in his mouth).

We started the month of November with doctor visits and are thrilled to report that all went well. Gus received his first flu shot and his first of 5-7 synagis shots. The latter is to help prevent RSV, a serious threat to preemies' lungs during the cold and flu season. We are following doctors' orders to keep him away from crowds this winter and are so thankful to have Ellen providing such loving care for him at home. Our travels and crowd interaction is restricted until the spring, which is nothing if we can keep a healthy baby.

The eye surgeon was pleased with Gus' progress and we no longer have to visit her, just 6-month checks with the pediatric opthamologist at this point. Gus was even able to sit up for his exam and did not need the metal springs to hold open his eyes. He smiled at the doctor and had no problem tracking the light she used in the exam - what a difference! The gastroenterologist took him off of prevacid and the pulmonologist was thrilled with his overall growth. Again, we no longer need to visit either of these doctors. He actually made it onto the charts for his overall size (5th percentile). One of his doctors thought he'd catch up to his actual birth age in a few months (not years!). We heard several times how blessed we were and how his progress is nothing short of miraculous. We do not take one moment or smile for granted! We enter this season...

Thankful beyond words,

Gregg, Jill and Gus

Big Gus Rolls On

2006-10-20T10:48:00.000-04:00

We know it's been a long time since we last posted! It's been a big month: Gus was baptized, Josiah became a teenager and Gregg was ordained! Gus' grandparents joined us from Maine and North Dakota for these events and enjoyed spending time with him out of the hospital. The last time both grandmas saw Gus he was literally a few days old and significantly smaller. Gus continues to amaze us with his progress ... not to mention his rolling over! Last night he did a complete 360 degree roll for friend Pam - did we mention he's a genius. Our home is an explosion of colorful toys and baby gear, and we've now entered the bib phase- we average 4 wet bibs a day. Gus also loves to put anything he can find into his mouth - especially his thumb. He's sleeping longer through the night - 8 to 10 hours - which is great for all. Even waking up at 3 am is okay - we just can't help smiling at him at any hour.

As you can see Gus looks more and more like his dad. I know there's some of me in there somewhere! His hair is growing in and so far is auburn with lots of strawberry-blond highlights. I think I saw some of my wave in there this morning... Oh yes, eyes are definitely blue!

Yes, the apple doesn't fall far from the tree in the Brekke clan! It was a wonderful visit with Josiah and his grandparents. Gus was great entertainment for everyone and had many "stories" to tell us. Gus loved returning his Grandpa Dean's big smile.

Here is one of Gus' big smiles. He is one happy little baby with giggles, smiles, chatter and coos. It probably helps that we can't stop smiling at him and pouring on the kisses. Every day we think about how blessed we are with this fun little miracle.

One of the things that didn't happen much this month was doctor visits. It feels so good! We did go this week to Gus' developmental assessment through Miami Valley Hospital. This was a four month (since coming home) check on his physical development, speech and overall health. Everyone was pleased with his progress and the fact that he's right on target for his 4-month adjusted age (based on the June due date). He's now 13 lbs 3 oz and 24 inches long. Dr. P, one of his NICU doctors, met with us and couldn't stop returning the smiles. It's bittersweet not seeing the wonderful NICU staff and friends that we grew to know so well, but so nice to not have to go into the hospital to be with Gus! We go back to the eye surgeon in November for a 3-month check. From our view, Gus' eyes are picking up people and shapes at a distance and he is seeing things very well. He loves to explore patterns on his blankets (thanks to everyone for those) and trace them with his fingers.

Rolling along,
Gregg, Jill and Gus

Gus Goes Wireless

2006-09-09T09:56:00.000-04:00

Gus visited the pulmonologist on Friday and was released from wearing the apnea monitor! What an exciting and terrifying time. We remember all the times from Gus' early days when he would stop breathing and turn blue - needing to be resuscitated by the nurses.

We have been assured however, that Gus is over the "apnea of prematurity" stage of life and we have nothing to worry about. In fact, Gus did just fine Friday night. He was able to sleep without being strapped down in his crib and seemed to have a great time spinning around!

More smiling Gus pictures. He really does love to laugh and play - what fun!

Gus in his swing. Jill took this timed exposure of him in the baby swing. He likes to go side to side and when he is really tired it is one of the best places for him to take a nap.

In just one week Gus has gained another 1/2 pound. He was 11lb 8oz at the doctors yesterday. We don't have to go back to the pulmonologist for another 2 months and that will probably be our last visit to him as long as all is well. We were barely home 2 hours and the company that provided the apnea monitor called to schedule a pick-up next week. What a great feeling. We think Gus is just perfect and we are so blessed that he has made such great progress. Thanks for all your prayers and encouragement.

Smiling (but sleepy),
Gregg, Jill and Gus

Gus is 6 months!

2006-09-06T13:40:00.000-04:00

Gus turned 6 month old on August 26. Of course his "adjusted age" is still less than three months. He is really catching up though - he is trying to roll over and really tries to push himself up when playing on his tummy. Our last pediatrician visit went well. Gus is gaining as quickly as any other preemie the doctor has observed.

Gus is also getting quite a personality. He loves to smile, giggle and "tell stories" when he's in the right mood. As of Sep 5, Gus now has a babysitter during the days - Miss Ellen. She has raised four boys of her own and the youngest is now a sophomore in high school. Ellen is great with Gus and he really enjoys being with her too.

More bath time pictures. Here Gus is being a little serious. He's not into playing during his bath - all business...

Gus is now over 11 lb and we go to see the pulmonologist this Friday. Hopefully he will be taken off the apnea monitor. We are just using it during the night right now so Gus is "wireless" during the day, even for his naps. We are excited to see the monitor go away, but it is also reassuring to have it on at night. This is one of those 'harder on me than it is you' moments in Gus' life...

Take care,
Gregg, Jill and Gus

Summer Daze

2006-08-21T12:29:00.000-04:00

What a wild summer it has been. Gus' coming home has definitely changed our lives a lot - much for the better. Doctors appointments have gone well - Gus' eyes are now completely healed from surgery and he only needs to go back in once a quarter for checkups. He will be going in for an eye exam with a pediatric opthomologist - he may need "baby glasses" but we are unsure as of yet. The last visit to the pulmonologist went well too. Gus no longer needs caffeine or diurel. He is still on the reflux medication, Prevacid. We can now have Gus off the monitor during his waking hours. The pulmonologist hopes to remove the monitor completely at our next visit in September.

Gus is really starting to smile and giggle a lot. Here he is giving a little glance to his sister Anna. He was so taken with the other kids and misses them a lot now that they aren't around.

Here are all the kids - Anna, Josiah, Gus and Zoe.

Good friends Mark and Susan from Minneapolis sent Gus a huge stuffed kitty and a cool Daddy Diaper bag! Gus loves the textures and softness of the big kitty. Its perfect for rolling around and "tummy time."

Gus has passed the 10 lb mark now - he is probably close to 10.5 lb at this time as he gains almost an ounce a day! He sometimes sleeps a lot and other times not so much... Last night he had one eight hour stretch of sleep which we really appreciated. Everyone is definitely growing into a new phase of life - the summer has flown by in a daze. I'm starting up with a new church in September and have definitely really my time home with Gus and the other kids. Jill continues to work from home and has had a little travel while appreciating the flexibility.

Blessings,
Gregg, Jill and Gus

Gus is 5 months! Post #100!

2006-08-04T11:42:00.000-04:00

It's been a while since we've posted an update and as you can imagine life is bold and full with our big guy home! It's my turn (Jill) to update, a first for me on the blog. Gus is just like a regular 7 week old baby (corrected age from his original due date) at this point. We've changed many diapers, quickly cleaned up baby throw-up off of various pieces of furniture and ourselves, logged many miles in the rocking chair and melted thousands of times in his embrace.Gus has discovered his fingers and almost has it worked out to get his thumb into his mouth! His eyes are inquisitive and he loves to kick and GIGGLE when he listens to music. His senses are really tuning into shapes, colors, sounds and textures. He's very loving and enjoys snuggles, giving lots of smiles and cooing. We can't wait for you all to meet this miracle and sweet boy in person!

Gus loved meeting his Aunt Melissa (Missy) this past week - as you can see. The two of them logged many hours cuddling and smiling together. Aunt Missy gave Gregg and I a big present by staying with Gus and his siblings one night so we could have a "date". It was good to step out for dinner and enjoy each other for a few hours knowing, all were in the most loving of care. And yes, Gregg and I still know how to talk about things other than baby body functions - it was great!

Another recent highlight has been Gus' introduction to his big brother Josiah and sisters Zoe and Anna. As you can see, the "guys" in the family are pretty taken with each other. It's a beautiful thing to see big brother rocking Gus to sleep. Zoe and Anna are also big helps and love their baby brother. Being the "big" sister is a new thing for Anna and she loves the role which includes entertaining - something we all enjoy.

Gus loves to explore and is starting to push himself up on his arms. We learned early in his life that he has a strong will - it's great to see it come through in his play and discovery!

This is another shot where we were coaxing a smile out of the big guy. One day I came down from my office and Gregg and Gus were staring at each other and giggling. As Gus giggled, Gregg giggled harder, then Gus giggled more...Yes, he does not lack for love!

Last week at his 5 month checkup Gus weighed in at 9 lb. 3 oz and was 22 inches long. We know he's gone through a big growth spell this week and will drink 3.5 to 5 oz of formula or breastmilk at each feeding so we're guessing he's just under 10 lbs today. We're down to one doctor appointment a week and he is no longer on Oxygen. His eyes are getting better and we visit with this doctor every 2 weeks. He is doing so well - we are blessed by the love and care of so many to be at this point with him. Another great thing for us is that good friend Ellen has agreed to care for Gus in our home starting in September when Gregg starts officially with his church. He is one lucky little man!

Smiling...in our hearts,
Gregg, Jill and Gus

Jill's First Touch

2006-07-19T00:11:00.000-04:00

I had to search through the pictures, but here is Jill's first touch with Gus - late evening on 2/26/06 - Gus' birthday:

First moments of life.... Gus' skin is so thin that it is translucent - showing the dark tone of blood. Now look at him below!

Smiling, almost 9 lb, Gus. A far cry from the 1 lb 12 oz Gus of the picture above. Yeah Gus - such a big boy.

Keeping in touch,
Gregg, Jill and Gus

New / Old Post

2006-07-18T22:10:00.000-04:00

OK - first of all, life with Gus is awesome. We are getting "tuned in" to his needs and his medications have stabilized quite a bit over the last week.

The pulmonoligist reduced his diuretic dose by half and is eager to take him completely off of it and caffeine by his next visit. One month off caffeine with good results and we will be able to shed the pulse/respiration monitor as well! Gus' eye exams have gone really well too - his right eye is catching up so we are now on every 2 week exams instead of every week.

The addition of Prevacid to Gus' medication regime has made a great difference. After about two weeks on this medication we can really tell a difference in his ability to keep food down. Lots less throw-up and reflux after feeding. He was 8 lb 6 oz last week so we expect he is near 9 lb at this time.

Here are some pictures from Gus' first days in this world - I had just returned home from my seminary transcultural trip in Mexico and was not using the digital camera at that time. It took all 5 months to finish off this roll of film in my Leica and have it developed... I think you will agree that these are some moving photos from February 26 and 27, 2006.

Sweet Jill was able to eke out a smile the day after her delivery ordeal. She is so gracious an beautiful - even in the lovely hospital gown.

Nurse Sherri was Gus' receiving nurse. She was the nurse who did all the pre-care on Gus - getting him wired up, respirator in and IV lines in place so he could merely stay alive his first few hours of life. Jill was wheeled in on her delivery gurney to see Gus. What a miracle to see these pictures again for the first time... Sherri stayed on as Gus' primary evening nurse his entire hospital stay - such a blessing! Another picture shows Jill touching Gus' hand - she had no recollection of touching him in his first days so having these pictures available is certainly an encouragement.

Nurse Lindsay was with Jill and me during delivery. She was the one who made sure Gus was transported into the NICU right after he was born. Lindsay also was a regular with Gus - it is amazing how deeply committed each nurse and doctor was to our individual case.

Here is the first picture of Gus through his portal. You can see the variety of tubes - breathing tube, IV line, heart monitor, feeding tube - all in place. This was probably taken in the wee hours of 2/27.

Nurse Susie taking care of Gus and being so patient with us... Again, another caregiver who stayed with Gus through his entire hospital stay and became a good friend along the way. Susie lives in our community and has lots of ties with other friends so it seems fateful that we got to know her so well.

Not much else to report. Gus is eating more and more - about 3.5 oz every 3 hours. I'm still staying home with Gus - my full-time job doesn't start until September 1 so this is a great experience. I have A LOT of respect for parents who stay at home full-time having now experienced it myself. Jill has been back to work for a few months now. She works at home so it is really nice that she can take her breaks to be with Gus and me.

Enjoying the little things,
Gregg, Jill and Gus

Long Time, No Post

2006-07-02T17:07:00.000-04:00

Needless to say - life has been a little busy lately. Gus is growing a lot and generally doing well. He has had some upset tummy problems this last week so we are keeping an eye on that. He sees the pediatric GI specialist tomorrow (Monday) so hopefully we will get a better picture of how to help him feel better. At Gus' 4 month check he was great. Obviously small for a 4 month old but for his adjusted age of 3 weeks he was right on target: 8 lbs and 21.5 in long. We have to keep reminding ourselves that Gus was due to be born on June 11 so he will be much more like a 3 week old...

We also had a visit from the OH state program called "Help Me Grow" that is specifically in place to help premature babies reach their developmental goals. At this checkup there were four assessors who checked for all sorts of things like reflexes, motor skills, body symmetry, etc. Their assessment was that Gus needed no developmental help and shows no signs of physical or mental disability! We were very pleased!!! We will continue to have a case worker with us until Gus is at least two, just to keep tabs on his development. But Gus won't need any regular physical therapy or developmental help which is a big relief.

Gus' big eyes like to follow us around. He makes some great expressions but rarely has the patience for me to get the camera out and ready - especially if I use the flash. He already knows what is coming...

Good friend Pam B who was with us the night Gus was born - she lives nearby and drove Jill's mom to and from the hospital quite a bit during her labor and delivery. She is such a great mom to her own two daughters and really had a knack with Gus.

Here is my good friend from seminary, Cori T with Gus. As you can see she was able to coax a smile out of him. Cori brought lunch and hung out for a while - what a great gift that was.

Gus just hanging out making his "ooooh" face. We will try to get more pictures of him with Jill and me. He is cute all on his own though.

Gus' most recent eye check was pretty much the same as before. The left eye is completely clear while the right eye continues to slowly make progress. There is no word on when/if a determination for further laser surgery will be made or if they will just continue to watch it heal at this pace.

We also received information from the March of Dimes walk this week. "Team Gus" came in 6th for raising money in Montgomery County Ohio! His team fundraising amount came in right behind one of the larger banks in our area (and ahead of several others.) It looks like he was the largest non-corporate, walking for a preemie, team fundraiser. Pam, in picture two above, and I are going to the awards banquet on July 12. Thanks for your continued love and support.

Finding out who is the boss,
Gregg, Jill and Gus (the boss)

Father's Day Update

2006-06-18T21:30:00.000-04:00

Gus has now been home almost three weeks and he is doing well. He is still on the heart/respiration monitor and has added Zantac to his drug regimen. He has had some reflux and a hard time digesting mostly formula - the Zantac seems to be helping after about 5 days on it now.

Gus likes to hang out on the living room floor and look around. There are a lot of cool patterns for him to focus on.

Gus isn't always perfectly happy. When he is really hungry or his tummy hurts he can scream as well as the rest of them...

Good friend Steve Beyer came over for a visit and was thrilled to get a little Gus time. Gus seems really comfortable with others and has an easy time transitioning from person to person.

Deb and Chuck Wiggins brought over an awesome dinner last week. Here is Deb cuddling with Gus.

Gus had another eye check and a weigh in this past week. His left eye is all clear after the laser surgery - his right eye still has one spot that is getting better. We return on Tuesday of this week for another check. Gus is over 7 lbs too - he is gaining weight as expected. Due to his reflux the doctor reduced his formula concentration and we no longer have to fortify breast milk before he eats. That seems to have helped his stomach feel a little better.

It was a great father's day - I got to hang out with Gus quite a bit and had a call from my other kids today too. They are excited to come and spend time with their baby brother soon.

One Day At A Time,
Gregg, Jill and Gus

Our First Week Home

2006-06-06T21:49:00.000-04:00

Well, we have survived our first week with Gus at home. Actually, more than survived - we have loved every second of it! Sure, he needs to get up a few times in the night to be fed and then there are the dirty diapers and the crying because of an upset tummy... But he is home with us and he is thriving! As a testimony to how well Gus is doing he went in for his weigh-in at the pediatrician today and he is 6 lb 8.4 oz!!! He is just shy of a pound heavier than when he left the NICU eight short days ago. The pediatrician will keep watch on Gus' weight and adjust the formula as needed - this is actually good for him right now as he catches up and builds new tissue.

The camera has been a little busy since Gus came home. We are smitten - in a deep state of smit - with him. Here he is giving a little smile in his bouncy chair. He is pretty content other than having an upset tummy now and then. He made the transition to using formula for some feeds on his last day at the NICU and it doesn't always agree with him. Gus is getting a fair amount of breast milk as well so it helps to make him feel better.

The classic cute baby sleeping picture. This was taken with natural light coming through the window above Gus and in the "Moses basket" sent by his great uncles Hugh and John. It is a wonderful woven bassinet that we can position in any which way to make a comfortable nest for Gus.

Evan Bole - this picture is JUST FOR YOU! Here is Gus' having his first full bath after coming home and it shows his BELLY BUTTON!!! Gus looks a little like Buddha here, but he is happy and growing like he should.

Gus' appointments all went well last week. The pulmonalogist gave us a great report - he will review the monitor data and decide when Gus can go off the caffeine dose and diurel in addition to stopping the oxygen during feeds and wearing of the apnea/heart monitor. We don't expect this to take place for at least 3-4 months, but Gus will have a monthly checkup anyway.

His eye exam went well - there is a great deal of healing that has taken place in Gus' eyes since his laser surgery. We will go back next Monday for an exam with the doctor who performed the laser surgery. We should know what sort of after-care Gus will need by then but so far all indications are positive. There is a strong possibility that Gus will have glasses as a toddler - a small price to pay for having correctable eyesight.

Thanks again for your continued prayers - and for your prayers for Kenyon Kill, MH and all the other babies as they continue their NICU experience. Thanks also to all the doctors, nurses, staff and the March of Dimes who, with their love and skill, make it possible for preemies to grow, thrive and live normal lives.

Growing Together,
Gregg, Jill and Gus

The First Few Days...

2006-06-01T22:53:00.000-04:00

I wanted to post an update about Gus' first few days at home. The short version: so far so good.

The longer version goes like this... We are thrilled to have Gus home. As dear friend Kris Kill wrote - no more driving to MVH, no more washing up to our elbows just to look at our baby, no more worrying about what the report will be after rounds, no more calling in to get the "update", no more getting calls from the doctors or nurses with potentially disturbing news. No doubt, Gus is still a preemie and has a long way to go to catch up but we are so encouraged by his homecoming.

So far Gus' week has been filled with appointments. He saw his regular pediatrician on Wednesday and then today (Thursday) saw both the pulmonary specialist at Dayton Children's Hospital and a home health checkup scheduled by the hospital. Tomorrow we go in for Gus' two week eye exam to check out how well he has healed from the laser surgery to correct retinopathy due to premature eyes. He seems to be looking around a lot and focusing in on faces and distinct objects. We really pray the healing has been completed and the scarring has stopped.

Life at home is different for Gus than at the NICU. Mom and Dad get to love on him all they want - he really enjoys that! There are new sounds and smells - and the lack of sounds and smells at home. We made fajitas tonight - probably not a smell he ever imagined in the NICU... We are getting lots of smiles and cuddles - Gus seems more calm and ready to explore than he ever was able to at the NICU. He still sleeps a lot and eats a lot and grunts a lot - he only cries when he is really hungry or has a seriously messy diaper. We think he is just perfect and keep telling each other that.

Once again, we want to thank everyone who has been so amazingly supportive of us during the last thirteen weeks (and prior to that when Jill was on bedrest!) If you aren't on our regular "Christmas Card" list - i.e. you didn't get a Christmas Card from the Brekkes in 2005 - please send your mailing address to me at the link in my profile. This includes you "Anonymous Victoria from Wisconsin"!!! We would love to send birth/homecoming announcements out to you as soon as they are printed.

Blessings,
Gregg

P.S. A few more pictures will be coming soon...

Free At Last!

2006-05-30T10:21:00.000-04:00

After thirteen weeks, nineteen and a half hours - Gus is HOME! This weekend has been a whirlwind of getting things ready for his departure from the NICU. Gus was 5 lb 8.5 oz and 18.3 inches long for his discharge and still two weeks from his official due date of June 11.

We were blessed to have Nurse Susie as Gus' nurse today for his discharge. All the NICU staff and nurses came out to wish Gus the best and say goodbye. A few tears were shed by everyone involved. Here are Jill, Susie and Gus ready to get into the car and make a break for it! The pack over Jill's right shoulder is Gus' home monitor. Leads are attached to him that pick up his heart and respiration rates.

After the 30 minute ride home Gus was ready for a nap. Actually, he slept all the way home and then continued to sleep until it was time to eat again. He is getting used to his new surroundings - new sights and smells and also less ambient noise from all the other people and babies. The nurses said that sometimes the babies who spend a long time in the NICU have a hard time adjusting to the "quiet" of home. Gus seems to be doing OK so far.

Gus is showing how we all feel after our first night together at home. We are all a little sleepy and ready for a nap. Gus slept just fine but Jill and I were awake with every little "grunt" he made - and he makes a lot of them! He is used to eating every three hours so that takes a little out of us as well. So far no monitor alarms other than loose leads - that helped us to sleep a little.

The next few days will involve a lot of getting used to our new routine. As much work as a baby can be we were pretty exhausted going to the NICU for 3-4 hours every day too. Gus has a follow-up exam for his eyes on Friday and sees the pediatrician on Tuesday. We will keep praying for a good result for the eye exam.

Friends have been great. Trent W, on behalf of congregants from SB-UCC, brought out a "Welcome Home Gus" sign and friends Matt, Jen and Cameron (who was a preemie himself) brought out some balloons and a sign too. Friend Kim H (who had a preemie only three years ago) brought out a glider rocker and footrest - THANKS! A few friends and neighbors stopped by to see the miracle of mighty Magnus last night. We are so thankful for all the people who have been supportive through our experience. We will make sure Gus knows the stories of how many people journeyed with us as he grew into the little man that he is.

Surprised and blessed,
Gregg, Jill and Gus

All Systems - Go!

2006-05-28T22:26:00.000-04:00

Gus checked out today on all of his "going home" tests. He had his electrolyte levels checked, a car seat fitting, a hearing test and became a true son of Abraham (was circumcised) all in the same day! It was a lot, but Gus just kept moving right along. He is really ready to come home.

When Gus was told he could come home he flashed a little smile for us. He has received such great care. As word spread among the nurses in the NICU they all dropped by to say "goodbye" to Gus, Jill and me. We are very blessed to have such great care. Even the doctors and nurse practitioners stopped over to wish us well. We can't say enough great things about MVH's NICU staff.

Gus gained a little more weight, up to 5 lb 7.25 oz. He will go home on a mix of breastfeeding and NeoSure formula until his pediatrician recommends something else. We are just thrilled to have him doing so well and able to be with us. We will continue to root and pray for Kenyon Kill, MH and VE as they all grow and progress toward that day when they can go home. We will have to transport Gus to the eye doctor for his post-surgery check-ups but that is OK with us.

We'll see how much updating I can do after Gus is home - I expect home care of a preemie will be just as interesting as was the NICU experience...

May Your Journeys Be Blessed,
Gregg, Jill and Gus

Homeward Bound ???

2006-05-27T22:24:00.000-04:00

The doctors and nurses are giving us the indication that Gus will be going home soon. We were called in for training today on home oxygen use during his feeds and the home heart and respiration monitor. It was a bit of a surprise to us but we are very pleased. We took Gus' car seat in for his sit testing tonight and we received his prescriptions for Diurel and Caffeine that he will continue to get even after he is home. At this point it looks like Monday or Tuesday will be his official release. He is waiting on some blood work and circumcision... Yeah, we would really prefer that they monitor him for at least 24 hours after the "procedure" to make sure everything is OK.

We decided this picture looks like Gus is having a conversation with us. Cydney (below) thought this was Gus' "I want a dill pickle" expression. Other than while feeding Gus is without supplemental oxygen. When we returned from our training today Respiratory Nurse Rachel was holding Gus on her lap. He has been a little fussy when we went away so she totally unplugged him and was just comforting him at her station. He is so loved and cared for at the NICU. I told all the nurses that because they have spoiled him I want their home and cell numbers so I can call them to come hold Gus when he is fussy. Seems only fair...

Here is good friend Cydney Shepard holding Gus today. Cydney has taken care of our other kids the past two summers and may help out with Gus a bit this year. She was just thrilled to see and hold Gus.

Gus gained some weight recently - up to 5 lb 6 oz. So far so good with the increased feeds. He took 67 ml for me tonight which is a big increase from 60 ml. He had some good burps and started back up again. He has really improved on his suck-swallow-breathe reflex, no more having to catch up by stopping eating to take a breath. Jill has enjoyed breast feeding with Gus too - he doesn't get the instant gratification he gets from the bottle but it seems as though he is willing to work at it. Obviously that unique time with Mom is very special to him.

Packing our bags,
Gregg, Jill and Gus

Gus Goes Wireless! *

2006-05-25T23:37:00.000-04:00

We were pleasantly surprised today to hear that Gus had his NG feeding tube removed from his nose and received permission to have the cannula removed - he is now breathing on his own! How exciting to have him make such good progress with eating and breathing that these two aids are no longer necessary.

Here is Gus' whole face - I don't think we had ever seen it without at least one tube or wire since he was born. The doctor still wants him to wear the cannula while he eats just as a precaution and to reduce the stress but it didn't seem to matter if it was in or out while we fed him today.

Gus was also moved to the "eat as much as you feel like" diet. His milk had been measured closely before but he was getting really grumpy about 45 minutes before his next feed. Turns out he was hungry so he is now able to take up to 2 oz (60ml) at each feed. So far he has taken the entire bottle each time in addition to what he is getting during his breast feeding.

Gus has lost a few ounces over the last few days - mostly due to restarting feeds after being on the IV and all the calories burned nursing and eating. He is at 5 lb 3 oz but with the increased feed volume that should begin to creep up soon. If Gus keeps this up he will be home soon, maybe even within a week. Nurse Penny is off over Memorial Day weekend and is concerned that he might go home or be moved to the graduate nursery without her... She requested the orders today that ultimately removed his feeding tube and cannula and increased his bottle feed volume. Again, we can't say enough good things about the people who care for Gus and the other babies at the NICU. Thanks also for your prayers for MH - she is doing great after her second round of eye surgery. Her parents are very encouraged by everyone's support.

Eating it up,
Gregg, Jill and Gus

*OK, not totally wireless - he still has the heart/respiration rates and oxygen saturation monitor wires.

Stronger every day

2006-05-24T21:42:00.000-04:00

Gus continues to progress today. He has taken the entire amount of every feed via the bottle for the last few days. The volume was increased to 45ml (1.5 oz) which was what he was eating prior to his surgery. His cannula flow was reduced to .75 liters per minute and at 21% oxygen. At this point, he really doesn't seem to need the cannula at all - he spent most of the time we were with him with it out of his nose because the tape that holds it in place was off. No problem - Gus' oxygen saturation remained high. One thought on why he is doing so well now is that the steroid treatment given to reduce swelling in his trachea may have bolstered his lungs a bit too. That, in addition to all the prayer and support from so many has certainly made a difference.

Gus lost a few ounces today - mostly water weight from after surgery. Now that he is back to full bottle feeds and off the IV he should start to gain again. He also enjoyed a little breast feeding today prior to falling asleep - the first time he really was latched on! What a great experience for Jill and he.

Looking forward,
Gregg, Jill and Gus

What a Gift!

2006-05-23T22:14:00.000-04:00

Today was my birthday and I received a great gift by being able to give Gus his bottle. We are so proud of his progress after surgery. He did REALLY WELL with his suck-swallow-breathe rhythm, especially with the special Dr. Brown's bottle. He didn't show any of the signs of struggling that he had prior to the surgery and didn't gag or suffer apnea at all during the bottle. Go Gus!!!

Jill snapped this picture of Gus having his first bottle with us after his eye surgery. Nurse Susie had already offered him two bottles today which he ate really well. He took the entire 30ml for me in about 11 minutes. Nurse Susie also asked the nurse practitioner if they could increase his feed to 40ml. He started getting that volume at his 7:00pm feeding.

Here are Nurses Penny (left) and Susie (right). They have been instrumental in assessing Gus' progress and encouraging his development. Penny recognized Gus' need for blood on Sunday and found that he really liked the Dr. Brown's bottle last week. Susie has recently helped Gus move off the ventilator and watched his ability to eat closely. We are blessed to have such wonderful and loving care!

Gus remains around 5 lb 8 oz. He has had some fluid loss and expectorant from his lungs after being removed from the ventilator. Gus' progress, including the increased feeds and not having any apnea events today, is truly miraculous. Thank you all for your faithfulness and prayers.

Blessings,
Gregg, Jill and Gus

Some Good News!

2006-05-22T23:05:00.000-04:00

Good news, Gus was taken off the ventilator today! We received a call around 1pm today from Nurse Susie telling us that Gus had made the transition to the cannula. So far so good. When we were in today around 3:30pm he was doing fine again - back on 1 liter per minute of flow and at an oxygen percentage of 45%. Morphine was stopped this morning and he remained on the steroid which should continue to reduce swelling in his trachea.

Gus was pretty awake while we were with him today. Although he isn't able to eat via the bottle yet, he is getting about 1/3 of the milk he previously had through the tube in his nose. The IV port in his head looks bad but it was the best way to deliver some fresh blood yesterday and his IV fluids today. Thanks you Nurse Penny for recognizing Gus' need for blood yesterday - his recovery has probably gone much quicker because he had some extra red blood cells.

After about 45 minutes in my arms Gus got tired and fell asleep. Here he is after Jill took over the holding duties. It was at this time that dear friend Rev. Nancy Dietsch arrived bringing a hand knit blanket for Gus. It has a beautiful pineapple pattern and will be a great addition to our growing arsenal of blankets for Gus when he arrives home. The pineapple, a symbol of welcome and hospitality, is a wonderful gift. Thank you so much Nancy.

Gus' weight remained the same from yesterday - 5 lb 9.5 oz. Partially due to fluid loss and/or retention due to his IV feeds and a reduced milk caloric intake. After being off morphine for 8 hours Gus was very alert and back to his spunky self. He doesn't like the IV port in his head and he is showing signs of wanting to start bottle feeds again - enjoying his pacifier a lot and making sucking sounds with his tongue. We are so thankful that he was able to come off the ventilator today - amazing! It is hard to imagine how amazing this feels as a parent. I hate to say that "you have to have been there" to know how this feels, but there is at least a little truth in that statement. We are very relieved and have new hope for Gus' return to normalcy and eventual trip home.

Please keep MH in your prayers for Tuesday. We spoke with her parents today and she is schedule to undergo her second round of laser surgery for treatment of retinopathy. She is still under 4 lb and at 35 weeks of gestation - oh, my heart goes out to her and her parents. They have been pod-mates of ours ever since Gus had his PDA surgery 9 weeks ago. She is a beautiful baby with such caring parents. Just like Gus encountered, this surgery means she will have to go back onto the ventilator for a period of time - and she has just recently returned to the cannula after a few weeks on the ventilator/CPAP when she was recovering from her last retinopathy treatment.

Gratefully,
Gregg, Jill and Gus

Hanging in there...

2006-05-22T09:49:00.000-04:00

Gus is still on the ventilator today and is doing OK. It is a little hard to tell because he is receiving some morphine to ease his discomfort with the ventilator tube down his airway. The last few days have been really hard on Gus - the surgery and subsequent move back to the ventilator have taken their toll on him. Irritation from the tube has caused an increase in fluid secretions which are affecting his lungs some. He received a blood transfusion yesterday and he remains on the steroid treatment to reduce the swelling in his trachea. We are hopeful that the steroid and diuretic treatments will clear his airway and lungs allowing him to have another chance at getting off the ventilator tomorrow.

Here is Gus on Friday - resting comfortably with Jill's hand on his head prior to surgery.

On Sunday afternoon Gus was resting on his tummy. You can see the ventilator tube in his mouth. If you look under his left arm you can also see the scar from his PDA surgery. Poor guy has been through so much but he has also done so well. We are very proud of him.

Gus' weight has been the least of our concerns lately... We did receive an update this morning that he is now 5 lb 9.5 oz. Some of that weight gain may be due to the added blood from yesterday and fluid buildup but he is still getting big. Please continue to pray with us that Gus' eyes will recover well, he will be ready to come off the ventilator soon and that he would be comforted during this healing period.

With much love,
Gregg, Jill and Gus

Update from Eye Surgery

2006-05-20T12:41:00.000-04:00

Gus' laser eye surgery went well on Friday - it only took about 1/2 hour because the damage was less severe and widespread in his cornea than first expected. The healing process for the surgery is about two weeks so we won't know if they were able to treat everything until then. Gus will have eye exams every Monday so we will keep you updated.

Gus remains on the ventilator respirator with a tube down his trachea. They tried to remove the tube this morning but after about 10 minutes it was clear that Gus was struggling. After trying the CPAP, the team decided to re-intubate him and return Gus to the ventilator. It seems his trachea had gotten irritated from the intubation and his airway was obstructed a bit which made breathing on his own very difficult. They will administer a steroid to reduce the swelling before trying again on Tuesday.

It has been a harrowing 24 hours for sure and we are certainly sad to see Gus back on the ventilator and unable to come off right away - he was getting so strong...

Jill's friends threw a baby shower for her last night and it sounds like it was a great time. Nurses Susie and Penny were there along with many other friends. Thanks so much to everyone who made this a special time for us.

Blessings,
Gregg

Gus Needs Eye Surgery...

2006-05-18T23:23:00.000-04:00

It has been a crazy few days so I'm just getting around to updating... We were notified today that Gus will be having laser eye surgery on Friday to correct damage to his retina (retinopathy.) It is surgery with a high success rate and fairly low risk. Yet, he needs to be put completely out with anesthesia and will be placed back on the ventilator respirator until he wakes up and is back in the groove.

Please keep Gus in your prayers for a successful surgery and quick recovery - along with his doctors and nurses. Nurse Penny is the retinopathy expert in the NICU and will assist with the surgery which gives us a lot of comfort.

Gus has been a little sleepy lately - he has slept through a few bottle feeds so they had to use the tube in his nose to get his milk straight to his stomach via gravity feed. When he is awake he is taking around 30 out of 45 ml. Still building up that endurance and sequencing the "suck-swallow-breathe" thing. He will have a swallow test study done next Wednesday to make sure he isn't aspirating milk into his lungs...

Welcome to the range. Safeties off. Ready... Aim...

OK - here is a discrete picture of Gus and Jill doing a little "target practice."

A NICU family portrait. Jill doing kangaroo care while Gus has a blanket over his head shielding his eyes after they were dilated for his exam today... No, it isn't an image that will end up on the "Olan Mills" brochure - but we are very blessed and happy to be together.

Gus is up to 5 lb 5.5 oz and is 18.5 inches long. He has really been growing lately. Other than needing surgery tomorrow and being too sleepy to get into eating Gus is doing pretty well. I was holding him tonight with the blanket over his head for about 40 minutes. When I lifted up his blanket to see his face I noticed his cannula prongs were up near the bridge of his nose - shooting oxygen around his eyes and not in his nose!!! The GREAT NEWS is that during those entire 40 minutes without any supplemental oxygen or pressure he maintained a high (95-98%) blood oxygen saturation level and didn't show any signs of respiratory distress. That is a huge thing as it was thought that he wouldn't be able to go without the cannula pressure very long...

Friday night is also Jill's shower for Gus - so many fine friends have come out to support her/us. We are still hopeful that Gus will be home in 3-4 weeks so there is a lot of work to be done!

Prayerful and patient,
Gregg, Jill and Gus

Target Practice!

2006-05-16T23:26:00.000-04:00

Gus was able to do some "target practice" today - taking the breast a little bit - really, that is what the nurses call it. He latched on really well and seemed to have a good time. He got tired after a while but Jill was thrilled with the experience. I guess this is where the analogy "like a baby to the breast" comes from - it was very natural for him and it was a great time of bonding for Jill and Gus that was obviously missed until he got to this point. We are so thankful for his progress!

Gus on his side all swaddled up and holding his pacifier. He continues to get stronger with his "suck" reflex. He took his entire 45 ml bottle with me tonight and didn't have any apnea during the feed. After he ate his bottle Gus quickly fell into a deep sleep and he had one apnea event. I just sat him up on my lap and he resolved it - a far cry from the vigorous rubbing and patting required just a few days ago.

Gus gained another ounce and a half today - up to 5 lb 4 oz! In addition to having his feed increased to 45 ml yesterday his caffeine dose was increased to 30 ml every 12 hours today. His sodium supplement has stopped and he is now getting a potassium supplement.

Shalom,
Gregg, Jill and Gus

Gainer's Formula 45

2006-05-15T21:44:00.000-04:00

Gus continues to improve today. So far the only apnea events he has had were around a bottle feeding at 1:00pm with the occupational therapist. They were trying to "dial him in" and get him to take the entire feed so he was probably a little tired. Gus is now getting 45ml of mostly breast milk every 3 hours. When I fed him at 4:00pm today he took all but 9ml. It sounds like he is usually completing about 3/4 of his feed before he gets tired and needs to have the rest fed via gravity.

Here are Gus and I getting ready for his feeding time. He did really well and I was able to get him to start slowly so he didn't choke or stop with his first big GULP. The title "Gainer's Formula 45" comes from a weight lifting protein drink meant to add weight - Gus' feed volume keeps increasing as he grows...

We think Gus is pretty cute... Such a precious little face and chubby cheeks!

Gus gained a whole ounce today - up to 5 lb 2.5 oz. Again, his eyes checked out better today than last Thursday so we are so thankful that they have begun to heal. Please continue to pray for complete healing in his eyes so Gus can avoid laser surgery. Please also remember MH and Kenyon Kill, and all the NICU babies, in your prayers as they have made big transitions this week too.

Shalom,
Gregg, Jill and Gus

Awesome!

2006-05-15T11:39:00.000-04:00

Nurse Susie called a few minutes ago to give us the results from Gus' eye exam today. His eyes have IMPROVED quite a bit compared to his exam last Thursday. What a huge relief and answer to all our prayers!!! He will be checked again on Thursday to monitor the progress. We are truly overwhelmed by the miracles that continue to heal and sustain Gus...

Thanks for your Faithfulness,
Gregg, Jill and Gus

More Mother's Day Pix

2006-05-14T20:30:00.000-04:00

We were at the hospital this afternoon to spend more time with Gus. No update - just a few more pictures...

Gus was full and sleepy - he loved sitting with Jill in the comfy new recliner at the NICU. Gus and I were able to take a little nap together before this picture was taken.

He was still sleeping as we left for the evening. Here is another picture with his "compare bear" - a companion to his storybook "Bear Snores On."

Blessings,
Gregg, Jill and Gus

Happy Mother's Day!

2006-05-14T13:20:00.000-04:00

Happy Mother's Day Jill! As surprising as Gus' arrival was 11 weeks ago you have always been amazing. You love and encourage Gus in all that he does and a child could ask for nothing better. Your endurance at this time and faith in Gus, and God's care for Gus, is an inspiration to many.

Yesterday was a busy and crazy day! I graduated from Seminary and our friends threw a party afterwards. We stopped by the hospital for about an hour after the commencement ceremony. Gus had just finished his feed so Jill and I held him as he got comfortable and slept. Jill is such a happy mom - so proud of Gus!

Gus was a little gassy and needed to burp after his feeding. He finally was able to work it out. Here he is just looking around and playing with his tongue. What a fun time for Gus - he is developing in so many ways.

Gus gained another .75 ounce yesterday and is now up to 5 lb 1.5 oz. The big news is that he is now taking his bottle for every feed. He doesn't always finish the entire bottle and sometimes he is too sleepy to even start but the doctors and nurses are helping him to get stronger by encouraging bottle feeding. Nurse Kelly (who is spending her Mother's Day with Gus instead of her own little boy - THANKS!) said he had at least partially fed with the bottle 7 out of 8 times yesterday. He took the entire 40ml 2-3 times too!

Gus' apnea spells continue - although they are fewer and farther between. We keep praying for continued progress as he "grows out" of these spells and for healing to take place in his eyes. There will be another eye exam tomorrow and we are hoping they show some progress of healing.

Thanks to all our Moms!
Gregg, Jill and Gus

Yo - Check out my CRIB!

2006-05-12T23:51:00.000-04:00

As you will see below, Gus moved out of the isolette and into a crib today. He is big enough and able to regulate his body temperature well enough that the move is right. Gus also turned 5 lb today! What a great milestone - it sure put a smile on our face when Susie told us this morning.

Speaking of smiles... Every so often Gus will just break out into a smile. Some think it is just gas but there are times that he seems to be responding to something. He is going to have to smile A LOT being the son of a construction insurance specialist and a pastor. Of course our hearts completely melt when he responds this way - knowing he is at least relaxed and content being in our arms.

Here is the big boy crib! Gus' "compare bear" is next to his head. The last picture with the bear is here when he was just two weeks old. No doubt he has gotten HUGE since then. Nurse Susie made Gus a special poster for inside his crib with pictures of his special day and notes saying "Gus is 5 pounds AND in a crib today - 74 days old." What wonderful care we continue to receive - Nurse Susie even sent Jill a Mother's Day card congratulating her on her first mother's day and encouraging her in the journey. It doesn't get better than that!

So Gus is 5 lbs now and getting stronger. He still has some stutter starts with bottle feeding. In the beginning he is so eager that he often gags. But once he is into it he seems to get his suck-swallow-breathe rhythm down and takes the better part of the bottle. If he gets tired however - the bottle feeding is done and he has to receive the rest of his milk down the tube that goes into his nose and down to his tummy. Today I fed him and he only needed to get 6ml this way - the other 34 was sucked down on his own. Gus' oxygen cannula remains at 1 liter per minute and is usually set to 21-25% oxygen. This is a good improvement so we are hoping that some of the central and obstructive apnea is clearing. Yet, when he forgets to breathe it is usually a pretty big event. Not too bad today - just a few including two during bottle feeding as he tried to establish his rhythm. Grow Gus grow - we are so proud of your effort.

Please continue to keep the other NICU babies in your prayers - especially MH. She is recovering slowly from a surgery and according to her parents is having a difficult time. Kenyon continues to do well and is sure a cutie - he is on a very similar path to the one Gus has been on. We spent some time with his parents tonight and they are great people filled with faith in their little guy.

With Hope-Filled Patience,
Gregg, Jill and Gus

Bath Time and a Book!

2006-05-11T23:16:00.000-04:00

Today Gus had a "swaddle bath" and a massage. The occupational therapist was there with us to guide and help - Gus really enjoyed both the bath and the massage and came out of the whole experience very relaxed.

Here is Gus getting ready to get dressed after his bath and massage - he is feeling really groovy! It went a little longer than anticipated so he was super hungry by the time we started his feeding.

Gus and I read a book as he was drifting off to sleep. "Bear Snores On" was the book - after I finished the book we both fell asleep on the comfy new recliner the NICU is trying out for their remodeled rooms.

Gus' eyes didn't show any change from the last time. While they weren't worse, they aren't better yet. We know that if they don't start to get better he will need the surgery to correct them - we just don't know how long they will wait yet. Please continue to pray for healing in Gus' eyes and for continued strength as he grows bigger. Eating every meal via the bottle and getting over the apnea events are still his big hurdles before he can come home. No weight change today, but he is getting close to that 5 lb mark!

Peace,
Gregg, Jill and Gus

Catching Up...

2006-05-10T21:54:00.000-04:00

Gus continues to make progress - having fewer episodes of apnea each day. He has been reduced to 1 liter per minute of flow on the cannula so we are hopeful that some healing and strengthening is taking place in his trachea that will help stop the causes of obstructive apnea. He continues to take a bottle feed once per 8 hour shift - it was my turn at 7:00pm tonight and he took about 1/3 before it was clear that he was too tired (from working out a big BM) so we gave the rest to him via gravity. Gus gained another ounce - up to 4 lb 14.5 oz today.

Gus and Jill hanging out after his feed. He fell asleep in my arms while sucking on his pacifier for a bit. He just loves to nuzzle and cuddle - what a wonderful feeling to get to hold him every day.

Tomorrow is a big day for Gus. He will have his eyes rechecked for retinopathy in the morning. Jill is then scheduled to be in before his afternoon feeding to give him his first "swaddle bath" with the occupational therapist. Please continue to keep all the NICU babies in your prayers - especially for healing in MH's and Gus' eyes.

Blessings,
Gregg, Jill and Gus

I Want to be a Cowboy

2006-05-09T10:45:00.000-04:00

This is the update from MAY 8 - Blogspot was down last night so I couldn't post until this morning. Gus was doing well today - his oxygen flow was reduced to 1.5 liters per minute and a concentration of 21% (room air). The concentration is turned up a bit if he has an apnea event but for the most part he is just needs the added pressure right now to keep his airway open.

Another great report is that Gus' eyes stayed the same from last week. No need to have laser surgery at this point. Nurse Penny, who is the retinopaty specialist, says that Gus' eyes could get better at this point because the progress of scarring has stopped. They will continue to monitor him every three days until his eyes do get better or until he needs surgery. We are prayerful that they will get better.

After Gus ate we did a little rocking - he likes to nuzzle into my shoulder/neck area. Check out the cool cowboy hat!

Gus gained an ounce yesterday - up to 4 lb 13.5 oz. He had lost a few ounces of fluids the day before and maybe the scale was off when he was up to 4 lb 14.25 oz. In any regard he is doing great with his eating and weight gain. He is now getting only breastmilk with a little powdered fortifier - no more gooey liquid fortifier.

Blessings,
Gregg, Jill and Gus

Doing Hard Time...

2006-05-07T22:56:00.000-04:00

Gus' time in the NICU is now hard time - he is big enough to come home but has to get past a few hurdles before he can do so. He has to be able to eat every feed with the bottle or breast - he is now getting the bottle twice a day. It takes a lot of energy so he has to build up to it. He also has to get past his major apnea events - he is down from over a dozen a day to only a few, but they are big ones when he has them.

Gus looks pretty content here in Jill's arms after eating his bottle. He had one major apnea event while eating - he was either falling asleep or had forgotten to breathe for a very long time. We were unable to get him breathing again by rubbing and turning him so Nurse Susie had to "bag" him and give him breaths before he picked it up on his own. REALLY scary to see as a parent so obviously we want Gus to outgrow this before he comes home.

Gus gained over three ounces yesterday - up to 4 lb 14.25 oz!!! We just talked with the nurse this evening and he had lost an ounce this evening due to "fluid output." That is OK too - what goes in must come out... Gus will have his eyes examined on Monday to see if the retinopathy has progressed/regressed. Please continue to pray for healing and a positive outcome.

Live at MVH (thanks Johnny Cash),
Gregg, Jill and Gus

Compare This!

2006-05-06T23:03:00.000-04:00

We arrived at the NICU tonight in time to give Gus his feed tonight. It was my lucky night to feed him his bottle and he took all 40 ml in about 25 minutes. He gets going really quickly and has to slow down in order to breathe - but he really enjoys eating from the bottle and we really enjoy the contact. It is so nice to be able to hold Gus for extended periods and do more with him.

Gus "smiles" as Jill holds him after eating. The hat was hand-knit by his aunt Melissa in Arizona. Thanks Missy!

Here is Gus' hand in mine - with my wedding ring over two fingers. Take a look here to see my ring around Gus' arm on March 1! The ring wouldn't even fit over three fingers today. Obviously he seems HUGE to us now!!!

Gus gained another few ounces last night - up to 4 lb 10.5 oz today. As the comparison picture shows above he is getting so much bigger and we are very pleased with his progress. Please keep Gus' eye health and his continued progress with breathing in your hearts and prayers. His progress over the next week or so will give us a good indication of when he can come home - a day we are eagerly awaiting as it draws closer.

Keeping the Faith,
Gregg, Jill and Gus

Take Home Weight

2006-05-05T20:54:00.000-04:00

Gus was doing well today - only a few minor apnea episodes. Dr. MB analyzed the results from the test from yesterday and it indicates that Gus' "central apnea", due to immaturity, and the "obstructive apnea", caused by the trachea closing - are closely related. It seems that after Gus recovers from a central apnea event he relaxes and rests which often causes an obstructive apnea. The resolution is twofold - continue to give Gus lots of caffeine and keep pressure applied to his cannula. He will be weaned back on both treatments until they go away. Gus can go home still receiving caffeine but he will need to be down to at least 1/2 liter per minute on the cannula before he can be released.

Here is another picture from yesterday - Gus was similarly sleepy today just resting comfortably with both Jill and I. He is back to getting his bottle twice a day too. He had one with nurse penny earlier in the day and then had 1/3 bottle with Jill before he fell asleep and needed to finish with the gravity feed. This was a great experience for Jill because prior to this the nurses and occupational therapists had done his bottle feeds to make sure he was exercising and breathing.

Gus is now up to 4 lb 8.5 oz today! That is the NICU's minimum "going home weight" - he just has to get his breathing and eating figured out first. We still look forward to a great result with Gus' eye exam on Monday and are praying that the progress of the cornea scarring has been stopped and is starting to heal.

Blessings to all who journey with us,
Gregg, Jill and Gus

Puppy Hat and Gus' First Test

2006-05-04T22:20:00.000-04:00

Gus came of the CPAP on Wednesday and onto the cannula in preparation for his TOPS analysis today. I know TOPS is an acronym for something but don't remember what it is. Basically it is a test to give some clues as to what is at the root of Gus' severe apnea events. While we didn't get any conclusive results back this evening it looks like increased pressure has helped over the past few days (CPAP and cannula flow off 2+ liters/minute.)

Gus also had his caffeine increased to 20 mg every 12 hours. As a comparison - a cup of green tea has 20 mg of caffeine. An 8 oz cup of coffee has about 60 mg. A 2 oz espresso shot has around 45 mg. Eight ounces of Ben and Jerry's Coffee Fudge Frozen Yogurt frozen has a whopping 85 mg! I usually have the equivalent of 4 espresso shots a day and I weight 155 lb - that is 1.16 mg per pound in 24 hours. Gus is getting 40 mg and is 4.5 lb - that is 8.9 mg per pound in 24 hours. It's good to be hooked early...

Look at Gus' CUTE puppy hat. I'm not huge on "cute" things, but this really is. You can see Jill beaming as she holds her much-loved little guy. My arm is in the picture too - holding Gus' feed which he is receiving via gravity. Rather than making Gus do all the work to suck milk out of a bottle right now they are giving him a rest and using the gravity feed as a way to simulate the speed of bottle feeding for him.

No big weight change - he went up a few grams yesterday. Maybe due to the CPAP apparatus coming off too which can add a little bit. The big growth change was noted in Gus' length - he is now 44 cm (or 17.3 inches) long!

On another note, Gus had another eye exam and found out that he may have some stage-two scarring on the retina. The opthamologist will re-examine Gus on Monday to confirm. If this is indeed the case, Gus will almost certainly need laser surgery to eliminate the scarring and stop it from spreading. The surgery has awesome and predictably positive results which makes us feel better. The tough part is that Gus will have to stop feeds for a bit and be put out cold which means a short trip back onto the respirator. We obviously hope this doesn't happen but this problem, called retinopathy, is very common in micro-preemies like Gus.

With Eyes Turned Upward,
Gregg, Jill and Gus

Carrying on

2006-05-02T22:44:00.000-04:00

Gus has had a really good sleepy 24 hours. There have been very few spells of apnea - and even the ones he had were minor. It seems as though the CPAP has provided some needed rest from the hard work of breathing and eating from a bottle. Gus was pretty spunky when we were changing him and doing care before his feeding. Much more like his usual self than yesterday.

Drs B and A were doing rounds on Gus when I came in this evening and indicated they felt he is probably suffering apnea because of weakened muscles in his trachea in combination with just having premature neural responses. The CPAP applies more pressure which keeps the trachea open - Gus' minor and infrequent apnea events with the CPAP pressure lead them to think that he just needs a little time and exercise for the trachea to get strong. He may go back and forth from the CPAP to the cannula until this resolves itself. This is good news - we will wait to see his progress.

Here is Jill holding Gus as he sleeps after his feed tonight. She is saying "shhhhh" as he fusses to get out a burp. He received his feeds today via gravity - getting 35 ml in about 15 minutes. He was awake for a good portion of the feed while I was holding him then it was time for his regular post-feed nap.

Nurse Penny drew Gus some B&W pictures to keep him occupied while in his isolette. His eyes really move around and you can tell he is looking at patterns on his blanket. These are more defined images that he can probably focus on better than faces and color images on his blanket. Thanks Penny!!!

Gus gained another 2.75 oz yesterday - now up to 4 lb 6 oz! Some of the weight may have been due to the addition of the CPAP apparatus, but not too much. Gus had a few "very large" GI events today that may have cleared a little weight so we will see what he weighs tomorrow .

We were very glad to see Gus awake and responding more, even if it was getting feisty during his assessment. More like the Gus we know and love and less like the lethargic guy we were with yesterday. He is such a trooper and continues to progress well with the love, prayers and support of so many people. Gus' podmates - VE, MH and KK - continue to make good progress as well. Each of them (and their parents) have ups and downs but are securely held in the care of a loving Creator.

Counting Tomorrows,
Gregg, Jill and Gus

One step back...

2006-05-01T22:02:00.000-04:00

Gus returned to the CPAP oxygen feed today after experiencing some pretty extreme apnea events this morning. The "good" news was he had one of these events when the doctors were standing at his isolette doing rounds. They observed his stopped breathing, heart rate drop and subsequent oxygen desaturation. They were also able to see how much effort it took to get Gus breathing again. After a few more of these events the doctor ordered Gus back on the CPAP - mostly to increase the flow and give him a little break.

Given how well Gus had been doing in the past week this is obviously of a disappointment for us. Yet it probably points to something treatable. The staff hopes to perform a diagnostic test to see if these apnea events are caused by an obstruction of the trachea or merely due to prematurity. His treatment has been caffeine so far - because of premature neural pathways that need to be stimulated. The doctor also wants to see if maybe Gus' trachea was weakened by his time on the ventilator. Gus will get to rest on the CPAP until this test is performed. Other factors that may have led to the severe apnea events include his immunizations last week and the exertion of bottle feeding over the last few days.

Here is Gus on the CPAP again - this time his head is big enough for the blue hat. His feeding tube diameter was increased so he could receive feeds via gravity so they had to insert it into his mouth instead of his nose. The entire 35 ml (1.25 oz) gravity feed went down in about 15 minutes! Earlier in the day Gus drained a 35 ml bottle in 8.5 minutes. Maybe that is why he became so tired. Gus was pretty sleepy today - he slept the entire time we were there except for about a minute or two. He is definitely not feeling "up" as usual. We pray it is just being tired and not an illness.

Susie (left) and Sherri (right) are pictured at the shift change this evening. They are Gus' primary care nurses when they are on 12 hour shifts. They just love Gus so much it is a wonder to see them care for him and for us. We were also blessed to have Penny around today when Gus was having his troubles. She was available in the unit when Susie was busy with other patients.

Gus gained almost a quarter pound yesterday - up to 4 lb 3.25 oz! Amazing growth... His "oil" supplement has been eliminated and he is now on breast milk and fortifier only. The occupational therapist gave Gus a massage today to loosen up his neck. He had the tendency to turn his head only to the right because of the position he had been in on the respirator and CPAP for so long. His PDA surgery scar is also under his left shoulder which may have tightened up once as he healed. We hear that after his massage everything was freed up and he was looking around in both directions.

It has been a tough day - mostly of "downs" and not many "ups." But we are still encouraged that God is doing a great work in Gus and all his NICU friends. We pray that this is only a minor setback and that he will be feeling better in a day or two along with having a diagnosis from his testing that will help the doctors and nurses treat these apnea events effectively.

With Brave Hearts,
Gregg, Jill and Gus

The BIG Guy!

2006-04-30T21:07:00.000-04:00

Gus broke 4 pounds today - 1829 grams which is 4.032 pounds. He kept up with his bottle feeding and will now get the bottle once every eight hour shift until he is strong enough to take it for every feed. Gus' oxygen flow was also reduced to 1.0 liters per minute from 1.5 liter per minute - giving him a chance to show us how much more breathing he can do on his own. We are so happy for these strides forward! His "events" of apnea and heart rate drops have also decreased which is a great step toward coming home within the next month.

Here is Gus being held by Nurse Penny as he is burped after taking in his bottle feed. He really is handling the suck-swallow-breathe thing really well and keeps most of the milk in his mouth.

Gus has now spent nine weeks in the NICU. He has to be at least 4.5 lb before they will send him home in addition to being able to take every feed from the breast or bottle. Some other benchmarks for his release from the hospital will be the decrease or elimination of any apnea events or heart rate drops and weaning him off of any regular medications (diurel and caffeine) as much as possible. Please keep praying for Gus and his NICU pals as they each continue to grow and develop at their own pace.

BIG Things Come in Little Packages,
Gregg, Jill and Gus

Suck - Swallow - Breathe (and so much more...)

2006-04-29T19:09:00.000-04:00

Today was the Dayton March of Dimes WalkAmerica at Wright State University. We had 36 friends walking with us on a really great day. Our estimated fundraising total for Team Gus is about $6000 although it may come in higher as those who didn't drop their registration materials into our folder are added up. Thanks to everyone for their fundraising - and thank you especially for your generosity, care and love. Because of you babies like Gus will be able to receive the best care possible and reap the benefits of research aimed specifically at helping premature babies survive and thrive! Click here for some pictures of the walk and our day.

We had a little window after the walk to invite a group of friends to the NICU to see Gus. The Reiser family (Tammy Jo, Dan, Amy, Nathan and Emma Lee) came in to see Gus with us.

Our big surprise was that when we arrived Nurse Penny was giving Gus a bottle! What a huge step this is for Gus. He did really well with the feed - learning the rhythm of "suck - swallow - breathe" that is a big developmental goal for 34 weeks gestation. Gus will be 34 weeks tomorrow so we are very pleased. Penny is so loving and caring and made sure Gus had a great experience. He will now get the bottle once a day for a few days and then move to once per eight hour shift until they finally move him to bottle only over the next 2-3 weeks.

Here is Gus with Nathan Reiser. Nathan was born at 32 weeks gestation and was 3 lb 8 oz. Gus is just a little bigger than he was at that point. Nathan had to learn the "suck - swallow - breathe" thing too with the help of his Dad, Dan. That was almost 16 years ago. Nathan is now 6 foot tall and a very wonderful young man. He is an inspiration to all of us and a hopeful pattern for Gus to follow.

Finally, here is a shot of most of Team Gus. Again, 36 people showed up for Gus and raised at least $6000 for March of Dimes research and education. We are so pleased and blessed to have these friends who care so much and are willing to put their time, effort and money into helping future premature babies. A special thanks to all of you online donors as well - your contributions are MOST APPRECIATED as is the concern you show for Gus and the other NICU babies.

Gus gained another ounce and a half - he is up to 3 lb 15 oz today and is 15.5 inches long. All the nurses who haven't seen him in a few weeks are so surprised at his growth spurt. Gus is such a blessing to us and his progress is a blessing to all those who have cared for him.

With Faith, Hope and Love,
Gregg, Jill and Gus

Puff Baby!

2006-04-28T23:19:00.000-04:00

Gus received his second round of immunizations today - he seemed to be doing pretty well. He enjoyed his time out of the isolette - a little skin-to-skin with me before wanting to be swaddled. His puffy hat is especially fun - sort of like a retro beret that only cool people can pull off wearing...

His afternoon went better than his morning with Gus only having one heart rate drop that required major intervention. While I was holding him he had two "events" - one because he was in deep sleep and another due to a little gag he had from his feed. After talking to the doctors tonight it looks like they are going to monitor his caffeine level more closely to keep it high. Caffeine stimulates the part of the brain that says "breathe" - something that isn't supposed to be happening for another six weeks or so.

Here is Gus during his feed - sucking on his pacifier to make sure he associates filling his tummy with sucking. No gravity feed or indication when he will move to the bottle yet but we expect both to happen within the next week. Gus is such a fighter and filled with the strength and courage that comes from the prayers and concerns of so many people. We are so thankful!

We went to dinner tonight with Frank and Kris Kill - parents of Kenyon. They are really great people and Kenyon is quite a trooper. Although each baby is unique, it seems that Kenyon's experience has been a lot like Gus'. He has gone on and off the ventilator a few times along with changes in his ventilator type. He lost some weight, but has gained most of it back. Please keep the Kill family in your prayers and remember all the babies in the NICU - they are truly God's special agents - reminding us that life is precious and tender.

Keepin' it real (true that),
Gregg, Jill and Gus

What a Big Shot!

2006-04-27T22:08:00.000-04:00

Gus is receiving his first round of immunizations this week - shots in those pudgy drumsticks! Gus' two month birthday was yesterday (4/26/06) and he is really healthy right now so it is time to start. Gus' nurse Susie has given him some Tylenol to help him feel better after his shots but it sounds like he can make some noise when being poked!

We decided not to do skin-to-skin care today because Gus was a little agitated due to the shots. Here he is about to take the pacifier while he is fed. This helps him associate sucking with having his tummy filled. Gus' feeding has been increased to 33ml over 1/2 hour! This is a big jump - it is more than an ounce over that short period of time which simulates bottle or breast feeding. It looks like Gus will move to gravity feed through his tube soon which is still faster. Indications are that he may try bottle feeding next week some time. Wow!

Gus is up to 3 lb 13.5 oz today. The increased feeds just keep adding up so quickly. We had been told that the time between 3 and 4 pounds would go quickly. Looking back, Gus weighed 2 lb 12 oz on April 12 so he has gained a whole pound in just two weeks! Gus continues to do OK on the cannula oxygen feed. He didn't have as many heart rate or respiration rate drop episodes today as yesterday. (Update morning of 4/28 - he had twice as many last night as he had all day...) Please keep Gus and his "pod-mates" in your prayers, especially KK, VE and MH. They are all at critical phases of their development and need all the support we can give.

It Hurts Me More Than It Hurts You,
Gregg, Jill and Gus

Fifteen Minutes...

2006-04-26T22:12:00.000-04:00

Today was Gus' big day for his "fifteen minutes of fame." Dayton's FOX45 and Cincinnati's ABC22 came to the hospital to interview him (us) concerning the March of Dimes and the progress he has made because of the innovation and research sponsored by them.

On the left is Katrina Frye, communications facilitator for Miami Valley Hospital, and on the right is Tom "fish" Fisher from Fox 45. Like a typical camera person (me included) his eyes are closed for the photograph. We like to call it the "Fish Frye" photo - great people who did an awesome job coordinating some exposure for Gus' progress and the efforts that MVH and the March of Dimes have contributed towards his success.

Gus weighed 3 lb 10.25 oz. He lost a little due to his big present to Nurse Penny yesterday. His caffeine was increased today so that it would stimulate the part of his brain that says "breathe" more regularly. Again, thank you March of Dimes research! Gus had his feeds increased to 30ml today - he is fed within one hour and has two hours to digest. In a few days he will probably begin to receive the feeds via gravity - as quickly as it will flow into his feed tube to get him used to bottle or breast feeding. Gus had his oxygen flow increased to 1.5 litres per minute (LPM), it is still far less than the CPAP's 9.0 LPM. We are hoping and praying that Gus will adjust to breathing regularly on his own with the help of the increased flow and the adjusted caffeine level.

Fame is fleeting - Love lasts forever,
Gregg, Jill and Gus

Hit Me With Your Best Shot!

2006-04-25T23:08:00.000-04:00

Gus was having a little trouble "moving" this morning - if you know what I mean... His awesome nurse Penny decided to give him a belly massage to get things going and he ended up "evacuating" in a big pressurized sort of way. Dear, dear Penny - you are a saint! Not only did he get Penny, his isolette and his blankets with the first volley - he "fired away" as she was closing up his fresh diaper after cleaning everything up. Now that is really taking a hit in the line of doody!

Gus was resting pretty comfortably on his back today. I would too if my tummy felt so good! Jill initially tried doing skin-to-skin but he gave us signals that he wanted to be wrapped up tightly and held rather than being free. Still a really good visit with Gus making smiling type faces and loving his mom's snuggles and kisses. Jill knit the hat Gus is wearing shortly after he was born. My sister Melissa also made him a hat that is still a little big on him but he should be able to wear pretty soon.

Gus weighed 3 lb 11 oz today prior to his big morning event. No news this evening on his weight but he is really packing it on. One great milestone is that he has more than doubled his birth weight of 1 lb 12.25 oz! What a big boy he is becoming - right before our eyes. He continues to do really well with the cannula oxygen feed. They haven't had to increase the pressure other than for a few heart rate drops and his supplied oxygen concentration continues to decrease.

Jill and I also wanted to send out a big "THANK YOU!!!" to all our friends in Heatherwoode who have provided excellent meals for us over the last few weeks - and will continue to do so until the end of May! The neighborhood book club got together and signed up to bring a meal every three days. People have gone grocery shopping, brought wonderful homemade soups and breads, and provided great tasting healthy and quick meals for us. Your generosity, support and love is truly amazing.

Every Blessing is Being Counted,
Gregg, Jill and Gus

Every Breath You Take...

2006-04-24T20:34:00.000-04:00

Well, Gus made the move to the cannula again today. He was doing really well keeping his oxygen saturation up and maintaining his breathing and heart rate. He was also great when we did his care, not really showing many signs of stress as we changed his diaper and took his temperature. Breathing totally on his own takes some energy but Gus' most recent chest x-ray was very clear and he has gained a lot of weight recently. Hopefully this time he can stay on the cannula until he doesn't need any more oxygen assistance.

Jill is cupping her hands over Gus' head after he did skin-to-skin care with me for over an hour. He is all dressed here and ready to be swaddled! He really likes to be wrapped up tightly while he sleeps.

I reported Gus' weight incorrectly yesterday it was 3 lb 7.75 oz - a half ounce heavier than we first thought. He keeps packing it on and is showing a lot of strength in many ways.

A quick reminder to all you Team Gus walkers - there will be a team table and staging area at the Wright State (Dayton, OH) March of Dimes WalkAmerica this upcoming Saturday. We will plan on having a sign so you can find us as we assemble in this team area prior to the walk. Either that or just look for the "What's the Fuss? Gus!" t-shirts. Also, some of the corporate sponsorship we were looking to get for the walk didn't fully materialize. If you or your company is interested in making a sizeable donation to the March of Dimes toward our $10,000 goal on behalf of Gus please follow the links to the right and/or let us know. Every penny helps in making sure babies like Gus thrive and are healthy.

With Increasing Synchronicity!
Gregg, Jill and Gus

Quick Update - EIGHT WEEKS OLD

2006-04-23T23:57:00.000-04:00

I'm back home on a late flight from Minnesota tonight and thought I would give a quick update. Gus is eight weeks old today. It is hard to believe that eight Sunday nights ago he came into our lives, but here it is. His two month birthday is on April 26th, which is also hard to believe.

Here is a picture for Evan with Gus' belly button in it. Jill took this picture yesterday and I think it is Gus having a big yawn - either that or he is singing opera.

I talked to Gus' nurse Sherri this evening and he has gained about another ounce today. I did the quick gram conversion and he is now up to 3 lb 7.25 oz and is 15 inches long. He has had no apnea episodes recently and seems to be doing much better recovering from minor drops in his oxygen saturation or heartbeat. No indication when they will try to move him off the CPAP to the cannula yet, but it seems likely soon. Gus has moved to concentrated feeds - he gets the full 26 ml in one hour now and then has two hours to process it. This is much more like what feeding will be like with a bottle or the breast and is preparing him for the next phase of babydom - eating through his mouth instead of a tube down his nose ad into his stomach. The coordination that controls the "suck, swallow, breathe" reflex doesn't develop until about 34 weeks. Gus still has a week or two to go before they try to feed him with a bottle...

Fi-ga-ro!
Gregg, Jill and Gus

Gone a Few Days...

2006-04-23T23:32:00.000-04:00

Sorry for not updating the last few days. I have been out of town with the other centers of our universe - my three kids in Minnesota (Jill's step children.) We had a great time together - it was the only time I could travel on a weekend for the next few months so thought I would take advantage of it.

Here they are at St. Paul's Como Zoo. Anna (6), Zoe (10) and Josiah (12). They are very proud of Gus and happy to be big brother and sisters to such a wonderful dude.

One Big Happy Family,
Gregg, Jill, Josiah, Zoe, Anna and Gus

Ready, Aim, Fire!

2006-04-19T20:34:00.000-04:00

Jill had her first experience with little boy target practice during Gus' diaper change! Good thing another diaper was already in place and was able to catch everything. Very accurate for such a little dude - good going Jill!

Gus is starting to make fun faces - not upset faces, just exercising his mouth muscles in new ways. One of his favorites is pierced lips - he looks like he is going to whistle. He likes to play games with his tongue - in and out, side to side, and turning it a little bit. Also pushing his blanket out of the way with his tongue in different shapes. He is also starting to exploring his world with his hands too - feeling objects and not just grasping them... Pretty cool! I was able to hold him for the entire two hours of his feeding today.

Gus is now 14.5 inches in length. He lost another few grams today due to the effects of the diuretics. That is OK because we could tell he was breathing much easier. We won't be sure until his x-ray tomorrow, but we have a great hunch that much of the fluid blockage in his lungs from a few days ago is gone. Another indicator is that Gus only had two "episodes" today where his heart rate or breathing dropped to very low levels. While zero would be best, this is still way fewer than he usually experiences - signs of strengthening in his lungs.

Finding Our Way,
Gregg, Jill and Gus

Two Chins and Counting

2006-04-18T19:57:00.000-04:00

Gus went back on the CPAP today - not really unexpected but we had really hoped he would make it on the cannula this time. His x-ray showed white (fluid) mainly in his right lung. His "Lasix" diuretic should help clear that up and get him ready for another shot at the cannula. He was doing so well on the CPAP today, resting and getting ready for next time...

Here is Gus getting settled in for skin-to-skin holding with Jill. "Shhh, shhh, shhh, shhh" she says as Gus calms himself after the transition out of his isolette.

Who would have thought a three pound baby could have so many chins?!? Gus is surely filling out and looks huge compared to our new friends' baby - Kenyon. Rest assured Kenyon, you will be this "big" soon!

Gus wanted to show off some of his "Gus Gear" for you all today. Remember the profits from sales of Gus Gear go toward the March of Dimes so thanks for all of your purchases so far!

Gus lost 15 grams, about .6 oz, today due to fluid loss from the diuretic. This is OK though - we want the fluid to clear out of his lungs so he can have another go at the cannula in a few days.

Many Blessings,
Gregg, Jill and Gus

Gus is 50! (days old...)

2006-04-17T19:51:00.000-04:00

Today is Gus' fifty day birthday - seven weeks and one day ago our little miracle came into our lives.

Not so little any more though - he now weights 3 lb 3.5 oz. He is doing alright on his cannula oxygen feed but struggles a little bit with remembering to breathe. An x-ray showed he has some blockage in his right lung so a diuretic, lasix, was given to clear some of the excess fluid. Gus' caffeine intake was also increased to match his weight and is used as a stimulant to help his breathing.

Gus had his eyes examined today - they were dilated so they could look at his retinal development again. I didn't take any pictures because his eyes were so sensitive and he just needed to rest. He was pretty easily upset and Jill's skin-to-skin time was cut short so Gus could just go back into the isolette and rest.

We are now into day two on the cannula so please keep those prayers going for Gus to make it over this hurdle. His weight gain, digestion and other indicators are all really great so we are hopeful that his lungs will clear up and this transition to unassisted breathing will "take."

Grow Gus Grow,
Gregg, Jill and Gus

Cheeky Boy!

2006-04-16T20:24:00.000-04:00

What a great Easter we had. We went to church supporting our friend Tammy Jo Reiser on her last day at a difficult pastoral assignment and then on to new friends' homes for dinner and desert. Special thanks to the Sprinkel family - Mike and Mary, and Christa Sprinkel (Mike's mom), for hosting a wonderful Easter dinner. Tammy Jo's family, husband Dan and kids Amy, Emily and Nathan, along with Chuck and Deb Wiggins were there for the fun as well - a great time.

Check out the cheeks on Gus! What a big boy he is becoming. After our great dinner, he had a good time hanging out with me and really is getting quite a grip - he sure knows how to grab onto my chest hair --- EEEK! Check out the blanket around Gus - it is a bunny print "blessing blanket" from a very special friend, Dana Palamariu. Dana is a seminary student from Romania and is a blessings to everyone she knows. Jill and I received beautiful prayer shawls from her when Gus got this blanket - Dana is amazing!

Gus gained another half an ounce today - up to 3 lb 1.0 oz. Gus is seven weeks old today and moved to the cannula oxygen feed again - his third time. Everyone has a good feeling that with his weight and how well he has responded to the CPAP weaning and resolving his heart rate and oxygen saturation drops. It is really amazing how much he has to do on his own considering he is still supposed to be in the womb at this point for another two months.

On a day of Beginnings - we are beginning,
Gregg, Jill and Gus

Double Breasted Baby

2006-04-15T21:29:00.000-04:00

Gus topped three pounds today - weighing in at 3 lb 0.5 oz. What a big boy he is getting to be. We can really tell that his body is filling out - especially his face, legs and arms.

Here is Gus yesterday laying on my chest. He was very sleepy and we spent the entire two hours of his feeding rocking away. Gus likes to sleep with his mouth open just like me...

Gus' beautiful mom just loves to hold him. We so look forward to our afternoons with him! We now have a regular "hands on" time of 4:00pm. We take his temperature, change his diaper and get ready for his feed and skin-to-skin care all at once.

Today Gus spent his time outside the isolette on his mom's (much smoother) chest. He was awake for quite a while but finally settled in to sleep after about half an hour. Gus has been weaned back to very low pressure on his CPAP oxygen feed in preparation for moving him to a cannula, hopefully tomorrow.

It looks like Gus will go to the cannula again in the next day or two so please continue to keep him in your prayers. Please also remember the other children that Gus has been traveling with since he was born - initials only, M.H. (girl) and V.E. (boy).

Happy Easter,
Gregg, Jill and Gus

2006-04-13T23:59:00.000-04:00

Sorry the update is late. I was out at the Via Crucis Experience taking pictures last night and was too tired to blog when I came home.

Today was isolette change day and Jill's turn to hold Gus. Here he is all snuggled in and sleeping. Not much to see of Gus with him all wrapped up, but at least you can see how beautiful and happy Jill is. They were able to sit and rock for almost an hour and a half before Gus gave the signals that he wanted to lie down again.

Gus gained another ounce yesterday - up to 2 lb 14.5 oz. When they weighed him early this morning there was no change. His calories have been increased along with an increase of his medication - all due to his increased size. He really is growing and filling out which is great to see. The nurse practitioner indicated that Gus may have his CPAP weaned again today in preparation for trying the nasal cannula again this weekend. Keep those prayers and good vibes going for Gus' strength as he makes this transition.

Happy Pesach (Passover),
Gregg, Jill and Gus

Out and About...

2006-04-12T22:34:00.000-04:00

Our regular holding times with Gus now are certainly a treat. Today he stayed on my chest for over an hour while he was having his feed. Although the CPAP makes positioning his head hard for Gus - he really does enjoy being held closely and it is great for us too!

Here we are on the rocking chair. I was wondering why his oxygen was turned so high while I was holding him and now looking closely at the pictures see that his CPAP prongs were out of his nose. So it was essentially like Gus was on the cannula while I was holding him - no pressure was going into his nose. Crazy the things we are learning!

Gus continues to gain weight - he is up to 2 lb 13.5 oz now. Go Gus Go! He is definitely bigger and filling out in his face, body, arms and legs. Gus' nurses, Penny and Lindsey, made us an Easter card from Gus today with cute pictures of him and a new set of foot and hand prints. It is amazing how much bigger they are than his original prints.

Jill was weighing things around the house for comparison. Gus is somewhat heavier than a UCC New Century Hymnal (2.6lb), but less than a bottle of Riesling (3.0lb). So after weighing what the bottle of wine weighs his next benchmark will be matching Bill Clinton's autobiography "My Life" at 3.5lb. After that it is on to weighing as much as three cans of soda (4.0lb). It will be a while before he weighs as much as a gallon of milk (9.0lb). Just some fun reference points as you think about how big or little Gus is.

Speaking of Penny, we went to her house church this evening. They have all been praying for Gus since he was born - what a great group who has been sharing in the story of Gus as it unfolds here...

Blessed to be blessed,
Gregg, Jill and Gus

Sweet Boy!

2006-04-11T22:07:00.000-04:00

Gus moved out of his private suite today - twin preemies were delivered today that needed the space. He was out into "Pod A" again with the associated noise and activity. Hopefully it doesn't bug him too much - he is getting bigger but the quite space sure was nice for him...

Although Gus is pictured here with his cannula on, it wasn't long after I visited him that he had to go back on the CPAP oxygen feed. He had lasted over 28 hours on the cannula - last time it was just under 20 hours. Sort of like weight training, he needs to rest between these "workouts" so I'm sure they will try again in a few days. This doesn't seem to alarm anyone at the hospital and is described as a regular part of weaning off of constant pressure from the oxygen. He is so cute with it off - we can't wait until he can do without the CPAP or the cannula. But we are patient that the healing and strengthening that has to happen before that point is occurring now.

Gus gained another ounce today - up to 2 lb 12 oz! He is now a pound heavier than when he was born. Jill went in after I did and was able to hold Gus for about an hour even with his CPAP on. He took a little time to get settled into the new headgear but has done fine since she left in the early evening.

Lifted up by Grace,
Gregg, Jill and Gus

Big Day for Big Gus

2006-04-10T23:00:00.000-04:00

Today Gus was moved to the cannula oxygen feed again. This time he seems to be transitioning much more smoothly. He also received some more blood - the first he has gotten in three weeks. Gus had his eyes examined for the first time today and everything looks fine. This will be a weekly exam for now - every six months after he is released. The main concern is detached retinas or blood in the eyes - both of which were negative for Gus.

No update yet on his weight but he looks bigger to us. No pictures either... Gus' eyes were dilated and the lights were turned low in his room - using the flash could have harmed his eyes while there were dilated so you will have to just look back a few days to remember how cute he is!

Please remember the March of Dimes and "Team Gus" in your charitable giving. We are still looking for some corporate sponsors for our team! Jackie Allen from the SW Ohio chapter of the March of Dimes came to visit us at the hospital today - they are really doing some amazing work locally and around the nation. She had heard about us through Gus' nursing staff and other March of Dimes board members. It is an honor to be helping such a great organization that is benefiting so many young lives.

Peace,
Gregg, Jill and Gus

Six Weeks Old!

2006-04-09T23:31:00.000-04:00

We spent another afternoon at the NICU with Gus. He is really getting quite a personality - crying and making little sounds. Gus surprised the nurses with his vocal chords today - they all ran in to hear him when he let out some loud cries. That is a good sign that his lungs are healthy and his throat is healing from his time with the respirator. He is also really good now with us changing him and doing his regular care with diaper changes and cleanup.

Jill was able to do skin-to-skin/kangaroo care with Gus today. She held him for almost two hours before he gave us the signals that he wanted to go back into the isolette. It was such a neat time - he made cooing and humming sounds as he slept on Jill's chest.

While doing the skin-to-skin care Gus likes to change positions. One of his favorite today was "The Thinker." He propped his chin up with one hand and ran his other across Jill's chest - he likes to feel us while being held.

Gus gained another ounce today - up to 2 lb 11 oz. Just one more to go before he is a pound heavier than his birth weight. It is so hard to believe that just a pound could make such a difference. We notice it in the size of his legs and the number of chins he is showing. Gus' face is fuller with nice round cheeks too. Gus received an increase in his feeds - up to 22 ml every three hours and has had his caffeine increased to help regulate his breathing.

Sweet Dreams,
Gregg, Jill and Gus

Shirts and Skins

2006-04-08T22:20:00.000-04:00

Today was my day to hold Gus and his nurse suggested "skin-to-skin" holding (also called "kangaroo care") for the first time. It is a little difficult with his CPAP but we managed it. Kangaroo care is supposed to be great for stimulating Gus' blood flow and breathing. It really helps with his nervous system development - he could sense my emotions, feel my movements and respond to my breathing. Really amazing! Gus also discovered how Dad reacts when you grab his chest hair - ayaaaaah!

So Gus and I were skins today - everyone else kept their shirts on. He really did well with the close human touch - his vital signs were excellent and the nurse had to turn his oxygen DOWN several times to keep him from getting too excited. We slept a little bit together which was nice.

Tomorrow will be Jill's turn at "kangaroo care" and she is looking forward to that close touch also. Gus is becoming such a big boy - not fussing as much during his care times and really responsive to our touches and voices. He weighed 2 lb 9.75 oz today - up a whole ounce from yesterday. His feedings are going well and he is able to digest the entire 21 ml within 30 minutes of the end of his feeding.

Peace,
Kanga, Jill and Joey

Gus Rocks!

2006-04-07T20:27:00.000-04:00

Now that Gus is doing better we can hold him every day when we go in. It is still a little difficult with his CPAP on, but as he gets stronger he will move to the cannula and that will make it easier. It is best if we go in during the times when his feeding is to start so he associates being held with eating.

Here is a shot over Jill's shoulder onto the rocking Gus. He was content for about an hour and a half as his feeding was going on. Then he wanted to be repositioned and go back into the isolette.

Gus had some troubles keeping his oxygen levels up and his heart rate regular in the last few days. It seems like he gets stressed or is just giving signals that he is uncomfortable. He is still very feisty and "self resolves" most of his vital sign problems without assistance from the nurses. His CPAP oxygen pressure was increased a bit today - hopefully it helps Gus rest more and get ready for a move to the cannula. His weight is now at 2 lb 8.75 oz so he continues to gain but fluctuates +/- .5 oz each day.

Rock On!
Gregg, Jill and Gus

Hanging Out...

2006-04-06T22:39:00.000-04:00

Today was Gus' isolette change. His nurse Stephanie had Gus all wrapped up like a burrito when we arrived and ready for his change.

Jill let me hold Gus today while he was out - she was able to do the same yesterday. I sat and rocked him as he received his feeding. He fell asleep pretty quickly and I held him for over an hour before he was ready to go back into the isolette for a change of position. Gus just feels so great - even though he is tiny there is no doubt he is getting bigger.

Gus continues to do well with his feeding and his lungs seem to be getting stronger. The on-call doctor hinted that they may try Gus on the cannula again this weekend. He sure looks a lot more comfortable with the cannula on, but they (and we) want to make sure it is a good time for Gus to move over... Please keep Gus in your prayers through the weekend.

Blessed With Your Kindness,
Gregg, Jill and Gus

Sleep and Grow

2006-04-05T21:41:00.000-04:00

Gus is in the "sleep and grow" phase of his NICU life. Jill and I visited separately today. Jill came at feeding time and held Gus for over an hour as he ate - what a special time! When I arrived at the NICU a little later Gus was sleeping but he soon pulled out his feeding tube and had to have it reinserted - after this he was great.

Here is Jill's hand on Gus from a few days ago - he was awake and looking at us. He really enjoys having us put a gentle but firm hand on his chest or back when he is sleeping.

Here is another of Gus' great nurses - Sherri. I haven't mentioned her much because she usually works nights and we mostly visit during the day. One of the great things about Sherri is that she was one of the nurses who helped admit Gus when he was born. She was with him that first night and has been his night-time primary ever since. It is so great to have caregivers who know and love Gus so much when we can't be there.

Gus is now regulating his own temperature. Although he is still in the isolette no heat is being added and Gus is keeping warm with clothes and blankets. Little steps but great progress.

Thanks for all your donations and Gus Gear orders,
Gregg, Jill and Gus

Another try...

2006-04-04T11:43:00.000-04:00

We aren't absolutely sure yet, but it sounds like the Drs might give Gus another shot on the cannula. He is doing really well with the CPAP still - his lungs are clear and he seems to be doing a lot of work on his own.

A LOT of people have complained about Gus' pink hat... Gus assured me that he is secure in his manhood. The pink hat is part of the CPAP kit - it hugs his head and keeps the tubes in place. If his head were a bit bigger he could wear the blue CPAP hat and make all my gender-stereotype phobic friends happy. :) Hopefully he will move over to the cannula before he needs the blue hat!

Gus is really packing the weight on - he gained two ounces yesterday and is up to 2 lb 9 oz! He is up to 21 ml of calorie fortified milk every three hours. We are so proud of his progress and so happy with the care he is getting. When we arrived today Susie had just gotten him snuggled in for a sleep. His eyes were open a bit and then he went to sleep. After a minor position shift he settled down and resting comfortably.

Blessings,
Gregg, Jill and Gus

Yawn-ey! (not Yanni)

2006-04-02T22:21:00.000-04:00

Open wide for a big YAWN with Gus on his five week birthday! Gus is now at the adjusted gestational age of 30 weeks - still ten weeks away from when he was supposed to have made his appearance.

When we arrived today his nurse, Stephanie, had just gotten him all cleaned up after his assessment and bundled in for a nap. He was very awake and alert - tuned in to our voices and what Stephanie was saying as well.

Even though Gus was really alert - he was getting sleepy as can be seen here by his big wide-eyed yawn. After this picture I put my hand on his head and over his shoulder and chest and held him as he drifted off to sleep. What a wonderful feeling to be there with him so calm and ready to rest.

Although Gus is back on the CPAP he seems to be doing really well with it. Sort of like weight lifting, he needs to build up some strength and endurance to make it on the cannula alone. Gus' weight is up to 2 lb 5.75 oz. Some of that may have been added by the head gear you see in the above picture but he really does seem to be filling out even though he is still so tiny. Keep praying for Gus' continued lung strength and healing - it is the most important part of his growth and recovery right now.

Encouraged by Greatness,
Gregg, Jill and Gus

Update...

2006-04-01T09:24:00.000-05:00

After the nursing shift change this morning Gus was placed back on the CPAP oxygen feed. It sounds like he struggled a bit last night and sometimes the excitement and activity of the shift change can also set him back a bit. We knew that the cannula was just a trial so I guess it may take a few days to regain strength before they try again.

Thanks for your prayers,
Gregg

Rhymes with cannula...

2006-03-31T23:14:00.000-05:00

Gus was placed on a nasal cannula today to see how things would go with him breathing totally on his own with no supplied pressure. Each transition is so difficult and required so much more energy than the last phase so we hope this goes well.

It is really great to see Gus' entire face! He was comfortable again on his tummy today and enjoyed having hands snuggle his head and feet. When I was there he squirmed right off his sleeping pad and needed to be repositioned. He also turned his head from side to side trying to get comfortable.

We were so happy to see Gus off the CPAP but he was struggling a bit to keep his vital signs in line with this transition. If all goes well we should be able to do kangaroo care, or skin-to-skin holding, with Gus in a few days. That will be good for him as well as Jill and me.

Blessings,
Gregg, Jill and Gus

Holding Day

2006-03-30T22:06:00.000-05:00

Another Thursday - another chance to hold Gus! He is still on the CPAP oxygen feed and doing really well - lowering his required oxygen percentage and amount of pressure every day. We are hopeful that he will move to a nasal cannula soon if he continues to progress as he is.

Gus was really settled today so we were both able to hold him. His vital signs were excellent and his oxygen requirements went way down when we held him - he really enjoyed being swaddled. Here is Jill - thrilled to be holding Gus and full of joy at his good progress this week. Gus is such a blessing and an incredible sign of hope to us and many!

Here is a close-up of Gus in his CPAP oxygen feed. It looks like he has a little snout - the yellow barrier behind the center tube just keeps air from flowing out around the prongs in his nose. The prongs are really short - less than .25 inch and don't seem to bother him at all. The only problem is when he moves his head as he tries to find a comfortable sleeping position. The nurses are really great at putting things around his head and allowing a little channel for the tubes to fit into so he barely knows it is there.

Gus has pretty much stayed the same weight this whole week - around 2 lb 3 oz. Even though his feeds have increased and mom's milk is being calorie fortified breathing on his own burns tons of calories. That will change as his lungs continue to heal and breathing becomes less work.

Shalom,
Gregg, Jill and Gus

Gus Gear Online!

2006-03-29T21:44:00.000-05:00

Gus is yet again in his "private suite". He continues to progress well on the CPAP oxygen feed - his average oxygen supply concentration was less than 30% today. Room oxygen is at 21% so he is getting down to a more self-sustaining level. He is also doing most of his own breathing and keeping his vital signs pretty stable, other than when he gets upset.

Here is another picture of Gus with the CPAP oxygen feed tubing. An external feed line "bubbles" into water to make the puffs of air going into his nose more gentle. If Gus keeps his mouth shut everything is good - but when his mouth is open you can hear the air oozing out... When he is bubbling and you have your hand on his head Gus feels like he is rumbling down a bumpy road!

I want to thank our awesome friends Tammy Jo Reiser, her husband Dan, and her kids Amy, Nathan and Emily for putting together the Gus Gear site! There are two logo styles - "What's the Fuss? Gus!" and "Never Underestimate the Little Guy." Tammy informs me that 20% of the proceeds from the sales of Gus Gear will go toward Team Gus donations to the March of Dimes! The rest covers the cost of manufacturing and shipping the goods. What a cool idea and some really sweet gear!

Being of Good Courage,
Gregg, Jill and Gus

Angels on our side...

2006-03-28T15:41:00.000-05:00

Gus has stayed in his "private suite" for another day. He is doing really well on the CPAP oxygen feed and is staying feisty for the nurses! Jill was even able to hear his voice today - little cries as he was being adjusted a bit. Most parents would have had ENOUGH - but we haven't heard much out of Gus so this is progress and a blessing. Jill's heart melted at the sound...

One of Gus' primary nurses is Penny. She (along with Susie, Rachel, Mary, Louisa, Michele, Sherry, Sarah, Abbey, Delinda, Kelley, Alka, Bridget -- and SO many others) are the angels that watch out for Gus right now. They are truly an amazing group of caregivers - so knowledgeable about all that Gus needs and so loving in their application. We are very thankful!

Gus started to get calorie fortified milk today. Time to bulk up dude! His continued progress with the CPAP is a good sign - he was breathing really well on his own today even when they removed the CPAP to do some suctoining of goop out of his mouth and nose. As I've said before, it is the little miracles that happen every minute Gus is there that are so amazing to see.

Many Blessings,
Gregg, Jill and Gus

Bundled up...

2006-03-27T22:43:00.000-05:00

Gus is still in the isolation room - nice and quiet. He was all bundled up today - the CPAP oxygen feed looks a little huge around his head, but he was pretty cozy.

Gus was really alert just before I left my visit today. His eyes were open and he was listening to me and following my face as I looked at him. Other than needing to have his nose and mouth suctioned out Gus was doing really well.

Gus is gaining just a little bit of weight at a time right now - he really hasn't changed over the last few days. We are hopeful that his steroid treatments will continue to heal Gus' lungs. It really is miraculous to watch his progress. He is very active - the nurses comment on how he is so spirited and that we should get our sleep while he is still at the hospital!

Thanks for all the prayers,
Gregg, Jill and Gus

Happy Birthday!

2006-03-26T20:21:00.000-05:00

Gus is one month old today! He was moved to the isolation room this morning - he is really sensitive to noise and light. The little guy next to him was circumcised yesterday and probably wasn't helping any. I'd be screaming too...

Gus is still on the CPAP oxygen feed. Because he had all of his regular care just before we arrived, we didn't want to get in and touch him too much. He was doing well and seemed to be adapting to life without the ventilator OK. The next 24 hours will really tell if the steroid has done the trick and he is ready to breathe on his own.

Gus is maintaining his weight just fine - he may lose a little as he transitions off of the IV feeds. His milk is being fortified with extra calories and he will remain on the caffeine to keep stimulating his breathing. It seems like he was having a better day today, fewer episodes where he forgot to breathe.

One of the cool things I heard to day was Gus' cry! He was squeaking a bit in between sleeping. I had my ear to the isolette and heard this little noise and looked at his face - it was a cry. This is the first we had ever heard from Gus - the ventilator tube kept him from making any noise at all for the first month. He is feisty and strong and we are still completely smitten. His next big leap is to stay off the ventilator and make it to the "graduate" nursery. Thanks for all the support and sustaining love - we are truly indebted.

Git 'er done, (Thanks Larry and TJR/DR!)
Gregg, Jill and Gus

Jumpin' Jack Flash - Gus Gets New Gas!

2006-03-25T21:48:00.000-05:00

When we arrived to see Gus today his doctor and nurse practitioner followed us over to his isolette to see our reaction to him being off the ventilator. An hour before we arrived they had removed his ventilator tube and put him on a CPAP (continuous positive airway pressure) bubble oxygen feed. This is a big deal - the first time in his life that Gus no longer needs a tube down his throat to help him breathe. The next 48 hours are critical as he receives three more steroid and caffeine treatments to strengthen his lungs and keep him off the ventilator.

Here is Gus with the CPAP oxygen feed on. Little prongs go about .25 inch into his nose and provide continuous pressure into his nasal cavity. The little bandage around his chin is just a gauze pad taped in place to keep his mouth closed so the oxygen doesn't escape. He has had the respirator tube in his mouth so long he isn't sure what to do with the freedom of having his mouth clear. Gus was really sensitive from all the changes so we didn't get to touch him much.

This is a time for strong prayer for Gus' success off the ventilator. Today has also been very trying for Jill and me as these changes and the concern we have for Gus is at a high point right now. The roller coaster just got the better of us...

Blessings,
Gregg, Jill and Gus

Mom's Touch

2006-03-24T23:26:00.000-05:00

Gus had already had a pretty exciting day when we arrived this afternoon. His nurse, Penny, told us that he had extubated himself (i.e. pulled his respirator tube out) and caused quite a fuss in the NICU. They tried to keep him off the respirator, but he really needed to be back on so they re-tubed him for the time being...

Gus had just gotten a dose of steroids and caffeine to help boost his lung healing. It was too early to see any effects of these medications.

Jill kept her hand in the isolette, giving some comfort to Gus while we were there. He liked to be touched, but he also was a little restless from all the activity and new medication. He liked the pacifier again - it seemed to calm him and give him something to do with his hands other than pull at his respirator tube!

Gus is still hanging around the 1 kilogram (2.25 lb) weight give or take 1/2 ounce each day. He is on maximum mom's milk feedings now and has begun to get a calorie boost mixed in to the breast milk. All of his external IV lines have been removed as well. He is getting all his nutrition and medicine via the feeding tube that runs down his nose into his stomach.

The doctor who we felt had been really abrupt yesterday was very kind to us today and took the time to explain more of what was going on with Gus' condition and steroid treatments. I probably need to give him a break - it was just really scary to us. We feel like we can handle a lot but our hearts are still so raw with emotion that it is easy to be startled. Gus is an awesome guy and we are so happy to see him have the strength to grow and respond to these treatments.

Gratefully,
Gregg, Jill and Gus

Cool Lid Dude!

2006-03-23T23:17:00.000-05:00

Another exciting day for us - Gus' isolette change and the chance to hold him. Gus might not be as excited about all the fuss of unhooking/hooking up again, etc - but he sure does love to be held.

Gus got a new lid (stocking cap) today during his isolette change. Hand knit and a really cool pattern.

Both Jill and I got to hold Gus today. I know it wasn't very long for each of us, but it sure does seem like a long time when you have this amazing person in your arms...

Gus was sticking out his tongue and making funny faces - not uncomfortable but maybe something else was going on. I didn't check...

When we first arrived today a new doctor we had never seen came up to us and announced in a rather alarmed tone that they wanted to put Gus on steroids and caffeine to get him off the ventilator. We were pretty shocked by the way he presented this news, not even introducing himself or giving an assessment of Gus before launching into this scary prescription. I told him we would have to think about it and do some research.

We asked our nurse, Susie, if this was a normal process and she assured us it was pretty regular. I was still uncomfortable and called the NICU when we got home and talked to a different doctor. She first explained Gus' health - he is doing very well: maxed out on his mother's milk feedings, stomach processing well, staying off the bilirubin lights, good blood counts, not needing other medications or supplemental nutrition, etc. Because he is so strong in so many ways, not because he is in imminent danger, they feel that this is a good time to start healing his lungs with the steroid and is a great step forward. The caffeine is used to prevent apnea - the part of the brain that controls regular breathing is underdeveloped before 32 weeks so this is a VERY normal part of preemie life when transitioning from the ventilator to self-sustained breathing. Overall, this is not alarming news as explained by this second doctor, rather it is good news for Gus' progress.

Note to the other doctor this afternoon - please take some sensitivity classes on bedside manner! We are grateful you know the science behind caring for premature babies, but you are caring for humans so please try not treating us like machines.

Please continue to pray with us as Gus takes these treatments and works to get off the ventilator. This is an important time for his progress and we are sure of God's caring Spirit for Gus and all the babies in the NICU.

Peace,
Gregg, Jill and Gus

Sleepy Eyes

2006-03-22T20:44:00.000-05:00

Jill and I each made our own visits to see Gus at the NICU today. Jill went in the early afternoon and I went after class. He is still receiving treatments for his lungs and getting some goop suctioned out of them every 3 hours. He seems to be struggling less with his breathing as a result. Gus is now getting 12 ml of milk every 2 hours and then having 1 hour off to process it. In big person terms that is like a 150 lb person drinking about 1.5 gallons of milk in the same period of time.

When I was in, Gus was laying on his side and was pretty comfortable. I was able to put my hand on his side and around his back. If I took my hand away, his vital signs would drop off - putting my hand back on brought them back into line. Even though we don't get much contact with Gus it is really great to know that our touch is comforting and sustaining to him.

While at the NICU there was a commotion that I overheard was the impending death of a newborn. Many family members and nurses went in and out of a procedure room near Gus. There was a lot of crying - including nurses who had to step out of the room to express their grief. I stayed with Gus and after some time a woman, who I assume was the mother, was wheeled out of the procedure room. She was completely dazed and in shock. Having experienced the still-birth of a child 18 months ago I can only say that Jill and I have been in that place - too confused to even feel anything.

Gus and I prayed for that family as they passed us, asking God's Spirit to be a true Comforter. I am so thankful for Gus but acknowledge there is often a fine line between death and life for these little people. I don't know their names, but please remember this family and their precious child in your prayers along with the nurses and doctors who were so moved.

Honored and humbled,
Gregg, Jill and Gus

Tummy Time

2006-03-21T18:15:00.000-05:00

Gus was struggling a bit when we were at the NICU with him today. He was twitching and convulsing around his stomach and chest - it was really scary to watch. Ultimately, it turned out that the drug they gave to get fluid out of his lungs was working really well and his respirator tube was getting partially clogged. Once the nurses and respiratory specialists figured this out they began to suction the tube regularly and Gus was able to rest again.

As before, Gus really likes time on his tummy. He seems to prefer his side one day and then his tummy the next. If you look down Gus' back a bit you can see the remnants of his PDA Ligation surgery scar. It is really small! I'll take Gus' new lens in tomorrow and try to get a better close-up...

Gus' feedings have increased again, now 10ml every 3 hours. That is the third day in a row. He continues to process Mom's milk really well so we hope he keeps it up. Gus' weight was at 2 lb 4.25 oz today. A little growth but now 1/2 pound heavier than when he was born!

With much faith,
Gregg, Jill and Gus

More Trucks

2006-03-20T22:30:00.000-05:00

We arrived at the NICU today to find Gus getting a blood transfusion. As the nurses said, he needed more "trucks" (i.e. red blood cells) to carry oxygen around his body.

Gus was resting comfortably and was happy to have us around. He peeked his eyes open a few times but wasn't all that interested in staying awake.

Gus' feedings have increased again, now 8ml every 3 hours. He is processing the milk really well. He is also receiving a drug called Lasix to help him get rid of some internal fluids that have been building up in his lungs. It sounds bad, but we are told this is pretty normal for little people like Gus.

It's so nice to receive everyone's comments on the blog - thanks for your concern and prayers. Knowing you all are with us in spirit is an amazing gift and encouragement.

Blessings,
Gregg, Jill and Gus