Monday, November 20, 2006


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

Friday, October 20, 2006

Big Gus Rolls On

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

Saturday, September 09, 2006

Gus Goes Wireless

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

Wednesday, September 06, 2006

Gus is 6 months!

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

Monday, August 21, 2006

Summer Daze

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.

Gregg, Jill and Gus

Friday, August 04, 2006

Gus is 5 months! Post #100!

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! our hearts,
Gregg, Jill and Gus

Wednesday, July 19, 2006

Jill's First Touch

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

Tuesday, July 18, 2006

New / Old Post

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

Sunday, July 02, 2006

Long Time, No Post

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)

Sunday, June 18, 2006

Father's Day Update

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

Tuesday, June 06, 2006

Our First Week Home

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

Thursday, June 01, 2006

The First Few Days...

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.


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

Tuesday, May 30, 2006

Free At Last!

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

Sunday, May 28, 2006

All Systems - Go!

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

Saturday, May 27, 2006

Homeward Bound ???

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

Thursday, May 25, 2006

Gus Goes Wireless! *

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.

Wednesday, May 24, 2006

Stronger every day

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

Tuesday, May 23, 2006

What a Gift!

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.

Gregg, Jill and Gus

Monday, May 22, 2006

Some Good News!

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.

Gregg, Jill and Gus

Hanging in there...

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

Saturday, May 20, 2006

Update from Eye Surgery

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.


Thursday, May 18, 2006

Gus Needs Eye Surgery...

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