Friday, March 31, 2006

Rhymes with cannula...

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.

Gregg, Jill and Gus

Thursday, March 30, 2006

Holding Day

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.

Gregg, Jill and Gus

Wednesday, March 29, 2006

Gus Gear Online!

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

Tuesday, March 28, 2006

Angels on our side...

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

Monday, March 27, 2006

Bundled up...

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

Sunday, March 26, 2006

Happy Birthday!

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

Saturday, March 25, 2006

Jumpin' Jack Flash - Gus Gets New Gas!

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...

Gregg, Jill and Gus

Friday, March 24, 2006

Mom's Touch

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.

Gregg, Jill and Gus

Thursday, March 23, 2006

Cool Lid Dude!

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.

Gregg, Jill and Gus

Wednesday, March 22, 2006

Sleepy Eyes

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

Tuesday, March 21, 2006

Tummy Time

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

Monday, March 20, 2006

More Trucks

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.

Gregg, Jill and Gus

Sunday, March 19, 2006

Eating it up!

Gus is three weeks old today! He is gaining weight and eating well - up to 2 lb 3.5 oz and has doubled his milk intake from yesterday, now getting 6ml every three hours. He may have had a little bit of a stomach ache because of the increased volume, but tilting him up in his bed seemed to help.

Gus' new macro lens is really nice! He was comfortable and comforting himself by playing with his fingers. I caught this picture of those tiny fingers discovering what it feels like to clasp his own hands together.
It also felt good to have a pacifier with the increased volume of milk. Even though the milk goes straight to his tummy via the line in his nose, Gus still enjoys making sucking motions with his mouth.

We heard that Gus had a difficult evening last night. His respirator tube was pulled up again or misplaced and it caused his left lung to shut down for a bit. They seemed to have it under control really quickly but were watching closely today and doing chest x-rays to make sure everything was back to normal. This afternoon when we were at the NICU they did another x-ray and found his left lung was fine but that he needed to be repositioned to help his right lung. He is such a trooper to put up with all of that.

It is such a miracle to watch Gus develop. Looking back on the pictures from three weeks ago it doesn't seem real. He is so much bigger than he was at that time but he is still so small. God has surely given us a great gift - both in Gus and in the abiding presence of grace that helps to sustain us each day. Each minute for Gus is still a wonder, and we are thankful for each one.

Gregg, Jill and Gus

Saturday, March 18, 2006

Better late than never...

BlogSpot was unavailable last night so I didn't get to post the update - so here is the update for Saturday, 3/18/06.

Gus was really sleepy today. He didn't even peek his eyes open the whole time we were there. Resting comfortably on his tummy is what he seems to like best right now. Gus also got a new macro (close-up) lens for his camera yesterday! I'll try it out for him until he is big enough to use it himself.
Here is a close-up of Gus' ear and feeding tube. He has doubled his milk intake from yesterday and is doing a great job of processing it - ALL THE WAY THROUGH, if you know what I mean. He has kept his nurses busy with diaper changes...

Gus' gained 1/2 ounce and seemed very comfortable while we were there. He really did well when one of us kept our hand on his head. His isolette temperature has been turned down a bit and Gus is now making more of his own heat which is good to see.

Thanks for your care and concern - and for all the great comments on the site. We will be saving everything for Gus to see when he is older.

Many Blessings,
Gregg, Jill and Gus

Friday, March 17, 2006

Toughest baby in the NICU!

He may not pull sleds filled with cinder blocks or stack truck tires over phone poles, but our Mighty Magnus sure can do some amazing things. For instance, today he pulled his respirator line partially out of his throat and caused a stir with his nurses! For some reason he wasn't getting enough oxygen... Once his nurse figured it out they re-inserted a "big-boy" tube and taped it in a little stronger. Magnus ver Magnusson watch out!

Grandma Nancy had some good time with Gus today as well - he knows the touch of those who love him. Thank you Grandma for all the help this week!

After nurse Susie and Gus had a long talk, he settled in for a little sleeping. Here he is resting comfortably in the first clothing he has worn - a little onesie with trucks on it. He rested his hands behind his head and slept away...

Today Gus was removed from his morphine and his feedings were increased. He is now getting 2ml (1/2 tsp) of mom's milk every three hours and his hands-on care has been switched from every three hours to six. Less fussing means more resting and a bit more stability for Gus.

Thank you for your prayers and blog comments,
Gregg, Jill and Gus

Thursday, March 16, 2006

Gus' Big Day Out

Today was Gus' day to have his isolette changed. This is the time that one of us gets to hold him a few minutes while they switch all his tubes, wires and gear from one incubator to a fresh one. This time it was Jill's turn - I got the first turn two weeks ago. When Gus had surgery last Thursday they reset his change day. The isolette change is a big deal for us as it is really the only time we get to hold Gus - other than this it is just being able to cuddle his head and feet a bit.

Jill was in heaven! There is almost more blanket than baby, but Gus a very special feel. You can see the respiratory nurse's hand with the bulb - Gus needs to be ventilated manually when the switch is being made.
Grandma Nancy got in close for a look too. Gus was sleeping through the entire change, he didn't feel like opening his eyes.
Jill stroked Gus' head and talked to him gently as the nurses were busy getting everything ready. It seems like such a short time, but time stops when you hold eternity in your arms...

Gus started feeding on mom's milk today. He is getting 1ml (1/5 of a teaspoon) every 3 hours just to see how things work. So far so good. Gus received his last dose of phenobarbital and has had his morphine reduced again - they will probably stop that in the next day or two as well. It looks like he has finally sprung back a little after his surgery. He is really sensitive to sound, light and touch - he likes to be swaddled and lay on his tummy. Anything else and he gets upset, showing the nurses and us his displeasure by dropping his heart rate and oxygen saturation levels.

Gus is feisty - that is a good sign. We continue to pray for him to gain in strength and weight, looking forward to the day when he is off the ventilator and we can hold him more regularly.

Thanks for your care,
Gregg, Jill and Gus

Wednesday, March 15, 2006

Bottoms Up...

For most of the day today Gus was enjoying life on his stomach. This is the first time we have seen him really enjoy sleeping in that position.

Gus was taken off the pulse ventilator and is now on the standard ventilator. He seems to be getting more comfortable and is giving signs that he is recovering after surgery. He was off the bilirubin lights so didn't have to wear his goggles today - it is nice to see his face...

Here is Gus on his tummy with one eye peeking out a bit. He was resting really well so wasn't all that interested in looking around. He would open an eye for a second but then be content to continue to sleep.

The transfer from the pulse ventilator to the standard ventilator had his supplied oxygen percentage up high again until he adjusts. While I was there with Gus the level of oxygen they needed to insert through the ventilator kept dropping - a sign that he was resting well and enjoying the company. Jill and Grandma visited later in the afternoon and he was doing even better.

We are hopeful that Gus will begin to take in mom's milk this week. Because of the difficult recovery from surgery and the wait to see if other drugs were out of his system the doctor had held back. We know that this is another time of transition for Gus - his stomach will have to get used to processing food. He amazes me every day as does the faithfulness of God who cares for all that has been created - including every one of you!

Please keep Gus and all NICU babies in your prayers,
Gregg, Jill and Gus

Tuesday, March 14, 2006

Touchdown Gus!

Great news today for Gus. His cranial ultrasound came back perfect - no signs of bleeding in the brain or vascular damage! This is a common source of problems in preterm babies and can be a sign of possible future learning difficulties. This is a great step forward and reason to celebrate and give thanks to God!

Gus had good reason to be excited today and flashed us the "touchdown" sign to show how nice it felt to have good news. He was really active today and recognized us as soon as we came in. He has been taken off of dopamine and he is on a very tiny amount of morphine, hopefully his recovery period after surgery is coming to a close... The goggles show that Gus is still under the ultraviolet lights that help keep jaundice at bay and his bilirubin level lower. The goggles help protect his eyes from the intense light, but his exposed parts are getting a nice tan.
Grandma Nancy was in to see Gus tonight too. She came last week all the way from West Fargo, ND. She likes to cuddle his head and feet and talk to him. As with everyone who loves him, Gus settles down and really enjoys the attention when she is with him.

Gus was up to 2 lb 2.75 oz today - adding a half an ounce over yesterday. There is the possibility that much of his weight gain is fluids - but signs show that he is gaining in other ways.

The "clear" brain scan result is a great relief. Thank you all for the prayers,
good Karma and well wishes for Gus to be guided safely through these tenuous first few weeks. Many peoples' faith, and the wide variety of faith expressions, are equally appreciated!

Held in the Creator's care,
Gregg, Jill and Gus

Monday, March 13, 2006

You're Getting Veeerrry Sleepy...

Gus spent the day sedated and recovering. He was put on phenobarbital to help him sleep, relax and let the ventilator work for him. As a result his morphine dose was reduced. He also received some medication to help his fluid levels stabilize after coming off of indomethicin which was hard on his kidneys. Still no feedings to the stomach yet - once all other vital signs are stable they will start.

We spent some good time with Gus at the NICU today. He was very calm when we cuddled him but wasn't too happy when the nurse came to draw his blood...

Here is a picture through the isolette porthole - you can see the IV line in his left hand with a little "board" to stabilize him and protect it from being pulled out. If you look to the left in the picture you will see Gus holding Jill's finger. His nurse, Penny, combed Gus' hair today. It isn't as wavy as when he first came out but it still looks dark to me.
This is Gus' new pulse ventilator that he was put on a few days after surgery. This one gives 420 puffs of air per minute. The difference between the pulse and oscillating ventilator is that the pulse ventilator only pushes air in where the oscillator both pushes and pulls air out. Gus has to exhale on his own with the pulse ventilator.
Yet another close-up of Gus' features. His little fingers are perfect and he enjoys holding our fingers when he is resting. He most enjoys it when we cup his head in one hand and hold his feet in his snuggly with our other hand. His vital signs are almost always stable when we are doing this, especially when we speak quietly to him. It is an amazing thing that he already knows our touch and voices. If anyone every doubted the power of a parent to influence and bless a child, this is proof of how important it is.

Gus' blood pressure was good today, his morning x-rays looked great and he continued to wean off of supplemental oxygen - all positive signs that he is progressing. He weighed 2 lb 2.25 oz today.

Jill and I are trying to conserve our strength for the important things. With hospital visits, recovery for Jill and school for me, it is somewhat hectic. My mother is here for the week and friends are great with rides for Jill too - both are a tremendous help. The "global village" of friends and even some strangers has been a great source of encouragement to us as well. From all accounts Gus is being added to the prayers of many people daily. I started tracking "hits" to the blogsite and he has received over 5,000 visits in the last week. Thank you all for the comments, cards, notes and emails!

Many Blessings,
Gregg, Jill and Gus

Sunday, March 12, 2006

Two Weeks Old

Another hard day for Gus, his two week birthday - 25 weeks gestation + 2 weeks. He's wasn't keeping his vital signs regular without being tweeked a lot. He had his stomach suction line reinserted to remove gas and that seemed to make him more comfortable for a while - then back to looking like he didn't feel so well again.

At the end of the day Gus had an x-ray that showed his lungs and stomach were OK - two concerns with the discomfort. At this point, it looks like he is just having a difficult time recovering from Thursday's surgery. Everyone is so concerned and caring, really wanting Gus to turn the corner so he can begin receiving more nutrition. We have been assured that each baby recovers differently and in their own time.

Don and Jen F. gave us this bear for Gus and we thought it would be great to use as his "compare bear." Here is the bear in Gus' isolette today. You can see that Gus is sleeping. He seemed to be doing better and acting more predictably - best when sleeping, poorer when being fussed with. Again, he enjoyed being cuddled.
I have mentioned many nurses and wanted to point out one of the fine doctors caring for Gus. Marc has been on duty at the NICU all week and has been wonderful, taking an interest in Gus as well as Jill and me. Some doctors are purely scientists and others are truly caregivers - Marc is a caregiver while always assuring us with his medical knowledge. Today he even asked if he could pray for Gus and us while we were there. We said "of course" and Marc put his hands in the isolette and on Gus to pray. That was a very powerful time. We are so blessed to have a doctor and nurses who are keenly skilled in their profession yet still acknowledge the mystery beyond science that can only be explained as God's creative and healing power.

We received a call this evening and Gus had been weaned back to room oxygen at 21% and his dopamine dose, to increase blood pressure, was also being reduced. These are good signs of progress for recovery along with the great x-ray results. Gus will have an ultrasound of his brain tomorrow to ensure there hasn't been any bleeding - yet one more things that is a threat to preterm babies.

Caring friends have given us several preemie and NICU books - all of which do their best to scare the crap out of you with worst case scenarios. (If you are one of those friends, thanks - we will read them later.) At this point, we want to keep focusing on the positives and progress. After dropping a few ounces of fluid weight, Gus is back up to 1 lb 15.25 oz, he is on room oxygen and his x-ray results are great. These steps, the wonderful care and many prayers are what we are going to put our energy into right now...

In God's Grace,
Gregg, Jill and Gus

Saturday, March 11, 2006

Shake it up, baby!

Gus has been back on a pulsating ventilator since last night - 420 puffs of air per minute from the "jet." He is definitely shakin' again.

He has had a hard day having "regular" vital signs. His nurse, Susie, has had a workout keeping everything stabilized. Gus is doing everything backwards today - when he is awake and squirming his vital signs are great. When he is asleep, his oxygen saturation and heart rate drop - EXACTLY the opposite of most other babies. Gus is better off when he is animated and trying to breath on his own right now...

Speaking of shakin' - one of the things Gus likes to do is flex his legs. As you can see from the blanket, the camera is not moving - it is his foot! The shutter was set to about 1/20 of a second so he is moving his leg around quite a bit.
Another picture of Gus trying to rest. Jill's hand is on his head and he is so comforted when we are holding him. His eyes were open a bit but I was snuggling him and didn't get a picture. When he hears our voices he cranes his neck around to hear where the voice is coming from - he really knows and responds to our voices and the voices of his regular caregivers!

It seems like Gus is still adjusting to post-surgery life. He isn't responding as the doctor expects, but they hope to be able to stabilize his vital signs soon. He is breaking the mold for responses to activity and rest so they are trying to find his "sweet spot" on the ventilator where he is most comfortable.

We can't be with him all the time, but he knows when we are there and that is a good feeling. Keep praying for this period in which Gus is to gain strength and begin to wean off ventilation in the next several weeks. He is so feisty right now - keeping the doctors and nurses on their toes - we hope this is a sign of his strength and will to thrive. I think it has a lot to do with his James blood (Jill's family) and an innate inability to stay still for very long.

Many Blessings,
Gregg, Jill and Gus

Friday, March 10, 2006

And in this corner...

...weighing in at 2 lb and one-quarter ounce - Magnus "Gus" Brekke!!! Gus was moved to a new corner in the NICU - away from some construction noise so he could rest while he recovers.

While he may not be a prize-fighter in the ring, he is pretty awesome in the incubator! Gus topped the scales this morning at over 2 pounds. It may just be fluids added after the surgery, but it was still nice to see it on his chart.
Gus was still a little groggy from surgery, but once his goggles were off he managed to sneak a peek at us. He is now on a "jet" ventilator after the surgery - it will be gentler to his lungs for the next few days. His blood pressure was back up so he was taken off the dopamine. He is still getting a little morphine as he is indicating that the surgery site is bothering him a bit by trying to move off of it.
Here is another of Gus' wonderful and loving nurses - Penny. She is so caring of him and thoughtful in every way. The house church she belongs to is also keeping Gus in their prayers and asking her for frequent updates. If any of you are reading - thanks! Your prayers are joined with those of many around the world.

This post-surgery period is a time for Gus to gain strength and begin to grow more now that his heart is doing a lot less work. The doctor who is on rounds this week said they are likely to introduce Gus to mom's milk this weekend if everything progresses as it is. If I heard the nurse correctly it will be 1ml over 6 hours to start with, one fifth of a teaspoon! If Gus can tolerate and process this much they will keep increasing the amount over time.

Gus' other grandma (my Mom) and his big (half) sister Zoe arrived yesterday. Grandma got to see Gus today but unfortunately Zoe is too young to enter the NICU. She gets first shot at seeing the pictures from the digital camera though. It was also good to see longtime friend Don F today - his wife Jen and kids sent a wonderful present of books and a stuffed bear. We may use this for Gus' "compare bear" to take pictures with as he grows. That way he will always know how big/small he used to be. Thanks!

Many Blessings,
Gregg, Jill and Gus


Here are the bar codes for items on Gus' pre-surgery NICU "charge sheet." He fills one of these up every few days with supplies at this point in his NICU experience. And, as a friend recently told me, one day he is going to want a very expensive snowboard...

Pre-term ventilation and incubation: $1,000 / day
Around the clock 1:1 NICU care: $1,500 / day
PDA ligation surgery: $3,000

A healthy little boy: Priceless...

Thank you Blue Cross and Blue Shield!


Thursday, March 09, 2006

Surgery Report

Gus' big day for surgery had finally arrived and we showed up a few hours prior to the procedure. Unfortunately the surgeons were delayed with another patient and we had to wait some extra time. Not their fault, but my anxiety level got so high that I had to leave the room. Gus was having some trouble with his ventilator - his heart rate was jumping all over the place - and the nurses had to do a lot to make him comfortable again. The stress of seeing Gus struggle, all the activity, and the waiting took it's toll so I figured it would be best for me to go before there were two Brekke men laid out on tables... To her credit, Jill was as cool as a cucumber!

Not that this was all bad - Jill and I went to get something to eat and had a chance to visit a dear friend from seminary, Trudy W, who has been hospitalized for the last month. She had a surgery and then an auto-immune attack that made her very ill. She is expected to be in the hospital for at least the next two weeks. Please join us in prayer for a quick healing for Trudy.

By the time we returned to the NICU, Gus' surgery was almost over.

Here is Gus chillin' with his toes up prior to surgery. He had three (3) ports for IV fluids - one in each arm and this one in his right foot. They needed to keep the left foot clear for blood tests... You can see the little prick marks on his heels - poor little dude!
Gus' pulmonary nurse for the surgery, and a regular in the NICU, was Rachel. She was very patient with getting Gus settled. Seems his respirator tube was bugging him a bit again - Rachel did all she could to make Gus comfortable before surgery.
The patch under Gus' left shoulder is the point at which the surgeons went in to perform the PDA ligation. The incision was only about an inch long and the procedure took place through the opening between the shoulder blade and ribs I guess. Maybe someone can explain the diagrams to me better, but that is an awfully tiny place to get through... Gus was pretty well sedated after surgery and needed a little dopamine to boost his blood pressure which is very common.

The surgeons and nurses said that the surgery went perfectly. The clip was placed and verified. Best of all, Gus was under no distress during the surgery as he had been in the time leading up to it. The nurses now say when they listen to Gus' heartbeat they hear a "tha-dum, tha-dum" instead of a "tha-swish, tha-swish" - no more blood flowing back to the lungs!

Special thanks to all those who joined us in prayer today - God is truly great! Thanks also to the surgeons, doctors, nurses and caregivers at the NICU who made Gus (and us) comfortable today. Finally, thanks to the March of Dimes who's research has made many of Gus' medical miracles possible.

Gregg, Jill and Gus

Surgery Went Well!

Just a quick note to let everyone know that the surgery went well. He is such a trooper! I'll post pictures and details later. Thanks to everyone for their fervent prayer and kind words...

Blessings to all,

Surgery is On

I just spoke to the doctor and nurse and gave consent for Gus' PDA ligation surgery today. At this point, it looks like the surgery will be around Noon.

Your faithfulness, prayer and kind comments are an inspiration to us,

Gregg, Jill and Gus

Wednesday, March 08, 2006

Big Blue Tent

We arrived at the NICU after lunch to find that Gus would not be having surgery today. He had a tough night - lots of erratic heart patterns and drops in his oxygen saturation. The NICU staff originally thought Gus had an infection, but early this morning they didn't find any trace of infection in his blood. They next adjusted his ventilator tube and that provided some relief from his discomfort. It seems the tube sank a little into the right lung, causing the pressure of the ventilator to only go into one lung. This freaked out the lung not getting oxygen and Gus reacted like he did yesterday - irritable and inconsistent. The decision was made to let Gus rest for the day and check everything again in the morning.
Gus is off the bilirubin light for now so he gets to hang out under the big blue tent. The NICU provides these blankets to drape over the incubators while having flaps they can raise to look in. Here is Jill with Gus - we decided not to get in and touch him today as he was resting nicely and probably recovering from his rough night. (I know how that feels...)
It is pretty dark under the big blue tent so I had to use the flash to catch this image. Shooting through plexiglas with a flash to refract light isn't the best photo environment but he's still cute!

Gus gained one quarter of an ounce last night - up to 1 lb 12 oz. We are a little anxious for Gus to have this surgery - with the arterial duct closed it means he can start moving forward with higher calorie feedings. As always, there are cautions - he is having a little problem passing his meconium and his belly is sore from that. They will want his intestines to be working well before they introduce mom's milk or formula.

Please join us once again in prayer for Gus' re-scheduled PDA surgery tomorrow, Thursday, March 9, 2006. I will write a report as soon as I can and give an update in the morning if we know he will definitely be in surgery.

We have received so many wonderful cards, gifts and flowers - each is a gift of love. Dana P, Tammy Jo & Dan, Ami C, Susan & Mark, Melsa & Skip, Amanda & Kurt, Jen, Matt & Cam, Helen & Karl, Mary & Todd, Sara & John, Davids UCC, Journey UCC, Brycon-CM Services - and so many more... Thank you for your thoughtfulness and care!
Gregg, Jill and Gus

Surgery Postponed

We received a call from the NICU late last night that Gus' surgery is postponed due to a scheduling backlog with the surgeon. They have also started to administer an antibiotic, feeling that Gus' irritability from yesterday may be the result of an infection.

I will post an updated surgery date / time as soon as I have it. Thanks for all of you comments and encouragement.


Tuesday, March 07, 2006

Tongue and Button

Despite the difficult news that Gus needs surgery tomorrow it is always a joy to be around him. Today he was really excited that we were there to visit - his heart rate went up and down and he was really wiggly. The nurse had to do some things to get his heart rate back in line so we decided to leave him alone to sleep. I called a few hours later to see how he was doing and everything had been just fine since we left - I guess he just gets wound up when we are there. We will have to watch that in the future.
Gus was moving his mouth a lot today - opening it up and sticking out his tongue. He wasn't interested in the pacifier, but did have fun rolling his tongue around.
The little nub of his umbilical cord fell off last night and Gus now has a belly button! Even though there are so many special and unique things that have to happen with preemies, it is good to see that some things progress as normally as they would for any other baby.

Gus lost half an ounce last night - down to 1 lb 11.75 oz - he will go up and down a bit as his fluids are adjusted. The nurse practitioner said he will now be getting a higher concentration of glucose and more lipids to help him grow.

Please pray for God's hand to guide the surgery tomorrow and Gus' complete recovery after,
Gregg, Jill and Gus

Monday, March 06, 2006


We received confirmation that Gus will need the PDA Ligation surgery. He is scheduled for the surgery at 10:30am on Wednesday morning, March 8, 2006. The whole procedure is only supposed to take about 15 minutes, but the preparation and recovery will be at least 24 hours. We know this is best for Gus, but it is so hard to see him have to undergo any more suffering or pain. My heart just hurts to think of it...

On a brighter note, Gus was playing peek-a-boo today - opening his eyes nice and wide to look around and then closing them until I put the camera down of course! We spent some good time with him today and he really seemed to recognize when his mom and dad were around and touching him. Of course he hears my voice, but he is also getting used to the click of the camera shutter and the occasional flash. Such is the life of a kid who has a photographer for a parent...

Gus is back up to his birth weight 1 lb 12.25 oz, gaining 2.5 oz yesterday alone! Please pray for a great outcome for Gus' surgery, his doctors and nurses, perseverance for Jill and me, and continued growth and strength for the big guy. He is truly amazing and a miracle to us.

Gregg, Jill and Gus

Needs the Clip

Well - despite some initial progress it looks like Gus is going to need the surgery to correct his PDA. We are still waiting for the official results from the cardiologist, so there is an outside chance that the technician missed the diagnosis. The valve that needs to close in his heart has not responded 100% to the medication he was on. If he does indeed need the surgery they will go into his chest cavity underneath his left arm and insert the clip on the duct to prevent backflow of blood. While we had hoped the medication would work this will still be a good step forward for Gus. With the duct closed he can begin to feed on milk and move on in other ways. The attending doctor told me he has seen 1000s of these surgeries with very few complications. Gus will have some treatments after the surgery to ensure his blood pressure is good and that he is healing. We don't have a time for surgery but it looks like it will take place on Tuesday, March 7.

Hang in there with us - obviously we are disappointed that he needs surgery and a bit worried for the big guy - this isn't the direction we wanted his PDA to go...



Sunday, March 05, 2006

Hold on Loosely (but don't let go!)

Sunday is the "big event" for Gus. He gets to change isolettes and be held by us. He has responded really well to his second round of endomethicin with no signs of danger to his kidneys. We will continue to pray that the electrocardiogram tomorrow shows that the Patent Ductus Arteriosus (PDA) has been taken care of.
More incredible pictures of Gus' perfect features - here holding Jill's hand. He had been sleeping before we arrived and Jill took his temperature and changed his diaper as we were getting ready to hold him during the isolette change.
Jill gave me the privilege of holding Gus during this first change - she said she will get a lot of one-on-one time later when he is nursing... She is such a kind and thoughtful soul. He is so tiny and fragile, but the nurse encouraged me to pull his hat back and kiss his head. What a joy that was! I didn't think we could do that until later. His head smells like "baby" and he was so warm, comfortable and content wrapped up in his blankets.
Gus received his PICC Line today for high concentration glucose feeding - sort of like really thick Gatorade. Unfortunately it didn't get inserted as far as they had hoped, but it will serve its purpose until Gus begins to feed on milk from his mom. That little line going into his left arm is the size of a thick thread - really so tiny but so important to his growth right now. I captured this picture just after it was inserted so the image is a little "raw." This is a normal part of preemie life and I thought it was important to document.

Gus gained another ounce today - up to 1 lb 8.75 oz. He is doing so well, yet he still has such a long way to go. I was able to go to our home church today, David's United Church of Christ in Kettering, OH, and was so warmly welcomed by the 100s of friends there who have huge hearts and concerns for our entire family. I have the joy tell everyone that our committed donations to the WalkAmerica "Team Gus" are now over $2600. Thank you all for your support and faithfulness to helping preemie children reach their full potential..

Your prayers and well wishes continue to sustain us all,
Gregg, Jill and Gus

Saturday, March 04, 2006

Sleepy Boy

Gus was sleepy today when we visited at the NICU. He was under the biliruben lights again and wearing his "sunglasses" as you will see in the picture below. I was able to hold him for a few seconds, just lifting him up in my hands as the nurse changed out the blankets under him. Jill and I have each been wearing one of his little blankets under our shirts so it gets our smell on it and we can place it in the isolette with him. They say this will help him identify our smells with comfort.
Here is Gus, still with the standard ventilator and shades on. His mouth moves a lot and has begun to stick out his tongue. We tried to help him suck on the pacifier again, but he was content without it today.
Jill held his hand for a long time - it made both of them feel good.
Gus was moving around a lot today - the nurses tell us it is because his nervous system is so immature. Little flinches and stretches are normal, probably similar to how he moved around inside Jill.
Here is a close-up of Gus' little heart monitor with puppies on it...
Gus received the first dose of three doses in his second round of endomethicin to close the backflow valve in his heart. The clinical term for what he has is called Patent Ductus Arteriosus (PDA). The "Patent" means it is still open but it needs to be closed. All babies are born with this duct open because Mom had been taking care of the blood flow and cleaning. The reflex that causes it to close in full-term babies is under-developed in preemies and often needs a little help. Also, the endomethicin is sort of hard on the kidneys and they only administer it so long before they decide to do surgery. Please keep praying that it closes with this treatment so we can avoid the surgery that would close it with a clip. Gus gained an ounce today - back up to 1 lb 7.75 oz after his predicted post-birth weight loss. YEAH GUS!

Today was sort of a hard day for Jill too. The emotions of the week, exhaustion and the reality of Gus' long journey began to settle in. Her spirits are good but the difficulties are still real.

Thanks for all your great comments - they are very encouraging to us!
Gregg, Jill and Gus