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

Tuesday, May 16, 2006

Target Practice!

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

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

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

Gregg, Jill and Gus

Monday, May 15, 2006

Gainer's Formula 45

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

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

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

Gregg, Jill and Gus


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

Thanks for your Faithfulness,
Gregg, Jill and Gus

Sunday, May 14, 2006

More Mother's Day Pix

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

Gus was full and sleepy - he loved sitting with Jill in the comfy new recliner at the NICU. Gus and I were able to take a little nap together before this picture was taken.
He was still sleeping as we left for the evening. Here is another picture with his "compare bear" - a companion to his storybook "Bear Snores On."

Gregg, Jill and Gus

Happy Mother's Day!

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

Yesterday was a busy and crazy day! I graduated from Seminary and our friends threw a party afterwards. We stopped by the hospital for about an hour after the commencement ceremony. Gus had just finished his feed so Jill and I held him as he got comfortable and slept. Jill is such a happy mom - so proud of Gus!
Gus was a little gassy and needed to burp after his feeding. He finally was able to work it out. Here he is just looking around and playing with his tongue. What a fun time for Gus - he is developing in so many ways.

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

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

Thanks to all our Moms!
Gregg, Jill and Gus

Friday, May 12, 2006

Yo - Check out my CRIB!

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

Speaking of smiles... Every so often Gus will just break out into a smile. Some think it is just gas but there are times that he seems to be responding to something. He is going to have to smile A LOT being the son of a construction insurance specialist and a pastor. Of course our hearts completely melt when he responds this way - knowing he is at least relaxed and content being in our arms.
Here is the big boy crib! Gus' "compare bear" is next to his head. The last picture with the bear is here when he was just two weeks old. No doubt he has gotten HUGE since then. Nurse Susie made Gus a special poster for inside his crib with pictures of his special day and notes saying "Gus is 5 pounds AND in a crib today - 74 days old." What wonderful care we continue to receive - Nurse Susie even sent Jill a Mother's Day card congratulating her on her first mother's day and encouraging her in the journey. It doesn't get better than that!

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

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

With Hope-Filled Patience,
Gregg, Jill and Gus

Thursday, May 11, 2006

Bath Time and a Book!

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

Here is Gus getting ready to get dressed after his bath and massage - he is feeling really groovy! It went a little longer than anticipated so he was super hungry by the time we started his feeding.
Gus and I read a book as he was drifting off to sleep. "Bear Snores On" was the book - after I finished the book we both fell asleep on the comfy new recliner the NICU is trying out for their remodeled rooms.
Gus' eyes didn't show any change from the last time. While they weren't worse, they aren't better yet. We know that if they don't start to get better he will need the surgery to correct them - we just don't know how long they will wait yet. Please continue to pray for healing in Gus' eyes and for continued strength as he grows bigger. Eating every meal via the bottle and getting over the apnea events are still his big hurdles before he can come home. No weight change today, but he is getting close to that 5 lb mark!

Gregg, Jill and Gus

Wednesday, May 10, 2006

Catching Up...

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

Gus and Jill hanging out after his feed. He fell asleep in my arms while sucking on his pacifier for a bit. He just loves to nuzzle and cuddle - what a wonderful feeling to get to hold him every day.
Tomorrow is a big day for Gus. He will have his eyes rechecked for retinopathy in the morning. Jill is then scheduled to be in before his afternoon feeding to give him his first "swaddle bath" with the occupational therapist. Please continue to keep all the NICU babies in your prayers - especially for healing in MH's and Gus' eyes.

Gregg, Jill and Gus

Tuesday, May 09, 2006

I Want to be a Cowboy

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

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

After Gus ate we did a little rocking - he likes to nuzzle into my shoulder/neck area. Check out the cool cowboy hat!
Gus gained an ounce yesterday - up to 4 lb 13.5 oz. He had lost a few ounces of fluids the day before and maybe the scale was off when he was up to 4 lb 14.25 oz. In any regard he is doing great with his eating and weight gain. He is now getting only breastmilk with a little powdered fortifier - no more gooey liquid fortifier.

Gregg, Jill and Gus

Sunday, May 07, 2006

Doing Hard Time...

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

Gus looks pretty content here in Jill's arms after eating his bottle. He had one major apnea event while eating - he was either falling asleep or had forgotten to breathe for a very long time. We were unable to get him breathing again by rubbing and turning him so Nurse Susie had to "bag" him and give him breaths before he picked it up on his own. REALLY scary to see as a parent so obviously we want Gus to outgrow this before he comes home.
Gus gained over three ounces yesterday - up to 4 lb 14.25 oz!!! We just talked with the nurse this evening and he had lost an ounce this evening due to "fluid output." That is OK too - what goes in must come out... Gus will have his eyes examined on Monday to see if the retinopathy has progressed/regressed. Please continue to pray for healing and a positive outcome.

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

Saturday, May 06, 2006

Compare This!

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

Gus "smiles" as Jill holds him after eating. The hat was hand-knit by his aunt Melissa in Arizona. Thanks Missy!
Here is Gus' hand in mine - with my wedding ring over two fingers. Take a look here to see my ring around Gus' arm on March 1! The ring wouldn't even fit over three fingers today. Obviously he seems HUGE to us now!!!
Gus gained another few ounces last night - up to 4 lb 10.5 oz today. As the comparison picture shows above he is getting so much bigger and we are very pleased with his progress. Please keep Gus' eye health and his continued progress with breathing in your hearts and prayers. His progress over the next week or so will give us a good indication of when he can come home - a day we are eagerly awaiting as it draws closer.

Keeping the Faith,
Gregg, Jill and Gus

Friday, May 05, 2006

Take Home Weight

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

Here is another picture from yesterday - Gus was similarly sleepy today just resting comfortably with both Jill and I. He is back to getting his bottle twice a day too. He had one with nurse penny earlier in the day and then had 1/3 bottle with Jill before he fell asleep and needed to finish with the gravity feed. This was a great experience for Jill because prior to this the nurses and occupational therapists had done his bottle feeds to make sure he was exercising and breathing.
Gus is now up to 4 lb 8.5 oz today! That is the NICU's minimum "going home weight" - he just has to get his breathing and eating figured out first. We still look forward to a great result with Gus' eye exam on Monday and are praying that the progress of the cornea scarring has been stopped and is starting to heal.

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

Thursday, May 04, 2006

Puppy Hat and Gus' First Test

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

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

Look at Gus' CUTE puppy hat. I'm not huge on "cute" things, but this really is. You can see Jill beaming as she holds her much-loved little guy. My arm is in the picture too - holding Gus' feed which he is receiving via gravity. Rather than making Gus do all the work to suck milk out of a bottle right now they are giving him a rest and using the gravity feed as a way to simulate the speed of bottle feeding for him.
No big weight change - he went up a few grams yesterday. Maybe due to the CPAP apparatus coming off too which can add a little bit. The big growth change was noted in Gus' length - he is now 44 cm (or 17.3 inches) long!

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

With Eyes Turned Upward,
Gregg, Jill and Gus

Tuesday, May 02, 2006

Carrying on

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

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

Here is Jill holding Gus as he sleeps after his feed tonight. She is saying "shhhhh" as he fusses to get out a burp. He received his feeds today via gravity - getting 35 ml in about 15 minutes. He was awake for a good portion of the feed while I was holding him then it was time for his regular post-feed nap.
Nurse Penny drew Gus some B&W pictures to keep him occupied while in his isolette. His eyes really move around and you can tell he is looking at patterns on his blanket. These are more defined images that he can probably focus on better than faces and color images on his blanket. Thanks Penny!!!
Gus gained another 2.75 oz yesterday - now up to 4 lb 6 oz! Some of the weight may have been due to the addition of the CPAP apparatus, but not too much. Gus had a few "very large" GI events today that may have cleared a little weight so we will see what he weighs tomorrow .

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

Counting Tomorrows,
Gregg, Jill and Gus

Monday, May 01, 2006

One step back...

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

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

Here is Gus on the CPAP again - this time his head is big enough for the blue hat. His feeding tube diameter was increased so he could receive feeds via gravity so they had to insert it into his mouth instead of his nose. The entire 35 ml (1.25 oz) gravity feed went down in about 15 minutes! Earlier in the day Gus drained a 35 ml bottle in 8.5 minutes. Maybe that is why he became so tired. Gus was pretty sleepy today - he slept the entire time we were there except for about a minute or two. He is definitely not feeling "up" as usual. We pray it is just being tired and not an illness.
Susie (left) and Sherri (right) are pictured at the shift change this evening. They are Gus' primary care nurses when they are on 12 hour shifts. They just love Gus so much it is a wonder to see them care for him and for us. We were also blessed to have Penny around today when Gus was having his troubles. She was available in the unit when Susie was busy with other patients.

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

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

With Brave Hearts,
Gregg, Jill and Gus