Sunday, April 30, 2006

The BIG Guy!

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

Saturday, April 29, 2006

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

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

Friday, April 28, 2006

Puff Baby!

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

Thursday, April 27, 2006

What a Big Shot!

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

Wednesday, April 26, 2006

Fifteen Minutes...

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

Tuesday, April 25, 2006

Hit Me With Your Best Shot!

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

Monday, April 24, 2006

Every Breath You Take...

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

Sunday, April 23, 2006

Quick Update - EIGHT WEEKS OLD

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...

Gregg, Jill and Gus

Gone a Few Days...

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

Wednesday, April 19, 2006

Ready, Aim, Fire!

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

Tuesday, April 18, 2006

Two Chins and Counting

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

Monday, April 17, 2006

Gus is 50! (days old...)

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

Sunday, April 16, 2006

Cheeky Boy!

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

Saturday, April 15, 2006

Double Breasted Baby

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

Thursday, April 13, 2006

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 (
Gregg, Jill and Gus

Wednesday, April 12, 2006

Out and About...

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

Tuesday, April 11, 2006

Sweet Boy!

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

Monday, April 10, 2006

Big Day for Big Gus

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.

Gregg, Jill and Gus

Sunday, April 09, 2006

Six Weeks Old!

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

Saturday, April 08, 2006

Shirts and Skins

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.

Kanga, Jill and Joey

Friday, April 07, 2006

Gus Rocks!

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

Thursday, April 06, 2006

Hanging Out...

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

Wednesday, April 05, 2006

Sleep and Grow

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

Tuesday, April 04, 2006

Another try...

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.

Gregg, Jill and Gus

Sunday, April 02, 2006

Yawn-ey! (not Yanni)

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

Saturday, April 01, 2006


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,