Wednesday, December 31, 2008

Baby New Year

Praise God!! Zachary has completed his antibiotic cycle and had his PICC line removed today!  He's now tube and wire free, and we can put some clothes on our little "naked baby".
We also received word from Dr. Wilkinson that his back is healing nicely, and he will be able to come home and have Mommy and Daddy finish his treatment.  Zachary has a head ultrasound scheduled for Friday to verify that his shunt is still functioning properly, and once the docs give him clearance after reading the results, he can come home!! Finally, our little fighter can enjoy his home, and his very own nursery.  He might  meet with the orthopedic surgeon Friday to have his feet cast as well, so things are lining up wonderfully.
Today was another feeding frenzy.  He entertains the nurses each day with his appetite, and they get a kick out of feeding him such "huge" amounts.  Zach probably doesn't eat more than the average baby, but so many of the children in the NICU are in a struggle just to survive, and they eat so little each day, that the nurses aren't used to big appetites.  We enjoy the feeding time, and the nurses seem to enjoy it too, so that makes Zachary a very loved little boy.  
After a couple of feedings today, Mommy and Daddy had a nice early dinner, then headed back to the NICU and got Zach down for the night.  It's doubtful any member of the Zurliene's will be awake to ring in the New Year tonight, but we wish you all a healthy, happy, and prosperous 2009.  Our Love to You All (enjoy the short video!) - Brian + Kimmie

Tuesday, December 30, 2008

Stay the Course... Set the Schedule

Zachary now seems to be developing a schedule, at least one that he has repeated for several days now.  We again arrived today to find him sleeping, and were able to finally feed him at 3, five full hours since his last feed.  He seems to eat very LARGE portions, then sleep for an extended time due to his full belly.  He ate 100cc's at 10am, and at 3 he breast fed for 25 minutes, then ate another 30cc's from the bottle.  He continued his routine of staying awake, but was not fussy at all this afternoon, and was a pleasure for Cindy, today's only visitor and deliverer of a wonderful basket filled with goodies (Thank You Cindy).  Zachary was able to eventually fall deep asleep after some quiet rocking, and decided to stay asleep for most of the evening.  It seems this is his afternoon routine, and it is working for now, we just hope wen he comes home he can continue his current trends, or possibly slightly modify them to better adapt to Mommy and Daddy's schedule.  
Due to his extended sleeping times most of today's pictures are of him sleeping.  We also included a shot of his shoulder with his "duck fur" that is so predominant on much of is body.  It is cute, but has made many of his sensors and adhesives very difficult to maintain because they tend to fall off of "hairy" surfaces.  
No word yet on the possibility of him coming home.  Dr. Handler did not have a chance to stop by yesterday, so hopefully tomorrow will bring a new update.  Tomorrow is the last day of his antibiotic cycle, and hopefully he will have his PICC line removed, leaving him free and clear of wires and tubes!  For now we continue to pray for his back to be healed, and for positive news when Dr. Handler examines him sometime this evening.  Until then, we continue to send you all our Love, and thank you for your prayers.  God Bless - Brian + Kimmie

Monday, December 29, 2008

No News Is Good News

We had a rather lengthy day today, but for very good reason.  Our little milk monster has turned into the incredible sleeping baby.  We are usually able to feed Zachary twice during our time spent at the NICU, but today we only fed him once.  Trying to stay on Zach's feeding schedule, we arrived around noon, expecting to feed him in short time, but to our surprise he slept for two more hours, and didn't really get to feed until 3.  After breast feeding for 20 minutes (his first solid feed at breast for almost a week), then topping it off with half a bottle, he stayed awake for about an hour, but was very calm and quiet the whole time (much more relaxing for Mommy and Daddy!).  We were able to get him down to sleep around 5 and headed out to get some dinner.    As you can see from the pictures above, we were able to have some fun while waiting for Zachary to awaken in the afternoon, which was nice, especially since we had such a lengthy wait! After returning from dinner we were met at the NICU door by our friends Adam and Ashley, with their children Autumn and Alex.  Unfortunately, they were only able to spend a short time visiting because of the nurse's shift change at 7, but it was a very nice surprise and we were very grateful.  Zach decided to sleep through their visit and didn't show any signs of stopping, so Mommy and Daddy decided to head for home around 8.  
The news from the doctors and nurses continues to be positive.  His incision is looking wonderful, and they are asking Dr. Handler this evening if it would be possible for Zachary to come home after his antibiotics are completed on Wednesday.  We hope and pray for his continued healing and more positive news tomorrow.  Until then there is nothing major or overly exciting to report, but with each day Zachary continues to improve, and we can't wait to bring him home!  With Love and Praise - Brian + Kimmie

Sunday, December 28, 2008

Our Little Milk Monster

Watch out world, hide your food stuffs, lock up your dairy products, the milk monster has arrived.  Zachary showed us today just how LARGE his appetite can be.  Chalk it up to needing more calories for healing, or growing, or adding weight, any way you slice it he loves his milk.  We arrived today and were able to feed Zachary a full bottle of milk, then tried to get him back to sleep with plenty of rocking and coddling, but he decided to stay awake and quiet for about 2 hours, before getting pretty fussy.  Erin, today's nurse suggested some more milk, and he dove right in, eating ANOTHER bottle.  That's about 4.5oz of milk less than four hours after his last full feeding, he just can't get enough.  At that point we were certain he would fall fast asleep, but alas, he fought back, and it took about 45 minutes to get him down and resting peacefully. The sleep/feed routine continues on as a very imperfect process, but we'll stick with it.
Today was the first day we did not have any visitors to the NICU, but we were able to pass much of the time talking with Zachary's nurse about his progress and getting his updates. I don't believe we've ever included a picture of Zachary's entire room so we tossed in the one above.  Lots of wires, and machines, but thankfully he has his own room, which is very nice when we need a little quiet time, or if Mommy needs to nurse/pump.  Dr. Handler came by again today and was pleased yet again with the progress his incision is making. John, the nurse practitioner, even mentioned that his back was one of the "best looking" granulated wounds that he had ever seen during the healing process.  We'll take any and all positive remarks, no matter how strange they may be!  When he finishes his antibiotics cycle on Wednesday, it appears he will be very close to being released. We are not making any plans, just continuing to pray that all the encouraging words from the NICU staff will come to fruition soon.    Tomorrow begins week 3 in the NICU, and we're praying that the third time is the charm!  Many Blessing to You All - Brian + Kimmie

Saturday, December 27, 2008

Mr. Popular

Today was a welcome continuation of yesterday's activities.  We arrived to find that Angie, last nights nurse had changed out all of Zachary's bedding and swaddled him in some new threads as well.  They all looked great and were much more masculine with the dominant blue coloring.  We thought Zach would feed around 11:30, but he decided to sleep until 1pm instead.  He has developed this routine for the past few days were he cluster feeds in the morning, then sleeps up to 4 hours, feeds in the early afternoon, then stays awake for 2-3 hours until his early evening feed, when he finally falls asleep again for up to 4 hours.  We're hoping to get him on a better routine, but if this holds up we'll just have to adjust it so his long sleep patterns coincide with night time hours.  No sense in having him awake until 3 or 4 in the morning, then sleeping all day!!
Overall things are steadily improving for Zachary.  Dr. Handler was by early this morning to look at his incision, and he is very pleased with its progress and healing, so that was very good news. Our "little" guy is now 6lbs. 15 oz, ever so close to that 7lb threshold, and gaining weight daily which is excellent.  Zachary was also able to maintain his PICC line with minimal back up for another day, so that is yet another small victory.  You can see in the photos above his PICC line starts on the inside of his left biceps and runs into the artery.  This leads to an inability to put Zach in any real clothes since they want to keep the line unobstructed, so he'll have to remain the "naked" baby for the next few days (diapers only!).  He loves his swaddles, and they keep him pretty warm, so it shouldn't be a problem.
Zachary had 5 more visitors today.  Jodee and Mark had a much more pleasant visit today, with no screaming, and anxious procedures to replace his PICC line.  Our good friend Bill stopped by for a while as well, which was very nice.  Then, just before we left for the day, Matt and Cindy stopped by to meet little Zachary and catch up a bit with Mommy and Daddy.  They headed back to New York, but Zach is excited for the opportunity to see them again in February when he has no tubes or antibiotics keeping him from being held.  
As his incision continues to heal, we continue to attempt to regulate his daily routine, but will most likely have to wait until he is home to truly get him settled into a favorable one for Mommy and Daddy.  Tomorrow we will try and be present for a couple more feedings and hopefully can get Mommy and Zachary on the same schedule for breast feeding/pumping.  Until then thank you all for your continued prayers, and support.  God Bless - Brian + Kimmie

Friday, December 26, 2008

Do These Arm Things Belong To Me?

Today was a return to some semblance of normalcy.  We arrived around 12:30 and were just in time to feed Zach.  He tried to breast feed with Mommy, but only gave it a half hearted effort, so we allowed him to finish up with the bottle.  The neonatologist was able to insert a new PICC line for his IV last night, and continue his antibiotics.  Shortly after we arrived today we noticed some blood backing up into the IV again, and after a thorough flush by the nurses as well as an adjustment of his tubes, we were able to maintain a fully functioning IV for the rest of the day (and hopefully the rest of his stay).  
Zachary's reaction to his feeding was pretty similar to yesterday's, with him staying awake and somewhat fussy for a good portion of the afternoon.  Normally he falls asleep and rests until the next feeding, but for the past couple of days he has been pretty ornery.  The nurse practitioner believes it may be a result of the sedative he was given during the IV procedures.  She said it can make you feel hung over as it wears off, so this may explain some of the "over tired" actions Zachary has shown yesterday and today. 
Before his afternoon feeding today it was time to change the dressing on the incision in his back.  When they pulled back the gauze it was not a pretty sight.  Most of he incision has pulled apart and is slowly filling in with a yellowish "goo" that they say will eventually form new skin. The nurse's seem convinced that it looks pretty healthy, so we'll take that as a positive and continue to pray that it heals as fast and as efficiently as possible.  After applying new dressings and changing Zach's diaper it was time for some milk.  Nicole and her parents Lucretia and Bill had arrived for a visit, which was fun, but regrettably too short, due to Zach's feeding time. 
While feeding Zach a second time we were able to get a few pictures of his "anemone" hands as Kimmie calls them.  You can see above he likes to close his eyes and flail his arms while moving his fingers during feeding, and even while sleeping.  He grabs his head, his cheek, or any towels in the area.  It's almost like he's unsure what to do with his hands, or even if they belong to him at all.  We're sure he'll figure it out soon, but in the meantime it's fun to sit back and watch the show.  
After feeding for a decent amount of time Zach decided to fall asleep with bottle in mouth yet again, this time for good.  He was sleeping peacefully for 1/2 hour so we decided to head out and allow him to stay on schedule.  Tomorrow we hope he is still on schedule and we can have a good day with him.  Hopefully his incision will look better, his IV will continue to function, and he can pick up the breast feeding like he has previously.  Thank God for the progress he has made to this point, and may he be blessed with the ability to continue on his journey to full health.  With Love and Praise - Brian + Kimmie

Thursday, December 25, 2008

To Clot or Not to Clot?

MERRY CHRISTMAS EVERYONE!!!  Today was a very long and tiring day for Zachary, and even for Daddy.  Mommy and Daddy began the day at 9am mass because they were too exhausted to make it to 11pm on Christmas Eve, and arrived at St. Joe's to bring some Christmas cheer around noon.  Zach seemed to be doing rather well, and his central catheter IV that was implanted last night to administer antibiotics was working well.  He slept for a while after Mommy and Daddy arrived, but that did not stop them from keeping with tradition and watching ELF at Zach's bedside on Mommy's laptop.  After waking, feeding, and taking Christmas portraits (above) in the early afternoon, Zachary never settled down enough to go back to sleep, and was rather irritable for several hours.  Jodee and Mark arrived soon thereafter and were treated to the finer side of child rearing with many "Zach Attacks" of crying, squirming, and overall grumpiness.  We thought he was possibly a little over stimulated and was beyond his sleep window, but tried our best to calm him and have him get a little sleep.  It was around this time that we noticed his IV was backing up just slightly with blood. Dianne, today's nurse, came in and flushed it through with saline, but a short time later Zachary's IV machine began chiming in with occlusion warnings.  This led to a rather lengthy procedure by the nurse practitioner, and eventually the neonatologist to attempt to flush out his IV line to allow further fluids and antibiotics to flow properly.  It seems some of the blood that had backed up into the IV had actually clotted and blocked the tube from functioning properly. Zach appears to have blood that clots very quickly and efficiently, which is very good for overall health, but is not good at all for things like blood samples, and IV's.  After several attempts, and several different medicines, they decided to remove the catheter all together and insert a new one later this evening.  Having not slept much at all, and putting up a pretty good fight during most of the procedure, they decided to allow Zach to rest and feed once more before beginning anything new.  At this point he was so over exerted that he basically passed out and slept for an hour.  Daddy was more than ready to join him, having stood by and watched the whole procedure and been worried throughout.  Luckily, Cindy and Amanda arrived and were able to enjoy seeing Zach when he was much more his normal self, and resting comfortably.  They even brought him a really soft blanket that Santa had dropped at their house by mistake, he must have known they were coming in today!  After getting some much needed rest, Zach awoke for a very brief time and fed until he fell asleep once more with bottle in mouth.  After spending a full day at the NICU Mommy and Daddy were drained, and decided to head home to rest themselves.  Tonight's plan is to insert the new catheter, continue his antibiotics, and hopefully get him back to his routine of wake, feed, sleep, repeat.  Merry Christmas once again all of you, and God Bless - Brian + Kimmie

Wednesday, December 24, 2008

What a Difference a Day Makes

No more air hoses, no more meds, our little Zachary is doing much, much better!  We arrived at the NICU around 11 this morning and got all of the updates on Zach's condition.  He had improved greatly through the night, and had been feeding from the bottle all night as well.
Things are shaping up fairly nicely, his only drawback at this time is his incision along his back from his surgery on his birthday.  It seems the very bottom 1/2 inch or so is pulling slightly apart and not healing quite the way they would like it to.  Dr. Handler was to come by and examine it this afternoon and they started Zach on some antibiotics just to insure the area does not become infected.  So at this point we cannot bring him home until his wound is fully covered over and healed, so we do not have a target date at this time.  In the grand scheme of things this is fairy minor, and we continue to pray for Zach's healing and a trip home soon.
Today was a pretty busy one for us. After arriving and getting his updates, we had three surprise visitors to the NICU.  Wanda, Dave, and Tom all came down to see the little guy and bring some Christmas cheer (and some delicious chocolates!).  Thank You to them for the surprise and for the short time they were able to spend, we love when friends can come and visit.  After a diaper change (Daddy's getting pretty good at avoiding any "troubles" that come about now!) and Zach's first breast feeding since Sunday, we were able to get him to sleep and headed out for a quick lunch.  When we returned Zachary was wide awake, quietly staring at Fiesta the polar bear, and not fussing or crying at all.  It was fun to engage with him and hold him for a short period of time while he was awake. Until this point the only time we saw his eyes for any time was during feeding, or if he was in discomfort.  After Daddy read Zach a few books, he slept for a short time, then awoke for his next feeding. The routine continued; wake, feed, burp, sleep, and Mommy and Daddy headed off to a couple of Christmas Eve dinners, and allowed Zachary to rest and slumber, awaiting the overnight arrival of Jolly Old St. Nick. 
We just got off the phone with the NICU and it seems the incision is going to take at least a week to heal properly, so our journey continues, and Zach's stay in the NICU has been extended yet again.  Please continue to pray for Zach's healing, and keep the wonderful words of support coming, we can't thank you all enough. We wish you all a very blessed and peaceful Christmas, and may God continue to strengthen us all.   - Brian + Kimmie

Tuesday, December 23, 2008

Quitting Cold Turkey

Well, our little man seems to have developed a bit of a fan base.  Today he had seven visitors to the NICU!  Thank You to Dan, Barb, Nonni, Missy, Karyn, George, and Nicole for all coming by today, and an extra special Thank You to the Sparks' for bringing us a delicious dinner.  
Zachary was off the respirator this morning, as we thought he would be, but he was struggling a bit with coming down off of the meds and painkillers that he had been administered.  It's akin to the body trying to rid itself of an addiction, or harmful chemicals, cold turkey.   He appeared quite uncomfortable, and was making a raspy, labored sound during his periods of tension.  This was also causing little Zach to have a reduced heart rate for a short time, something they call bradycardia.  He had been receiving a "whiff"of oxygen through his breathing dome, but they decided to switch him over to a comfort air, just a simple tube that delivers a little air through the nose to relieve the pressure needed to fill his lungs.  After switching him over to the new apparatus he seemed to do better for some time, but was still suffering the occasional "brady".  Valerie, today's nurse suggested that some kangaroo care might help to regulate Zachary's breathing and steady his heart rate.  Kangaroo Care (the top two photos) is highly recommended by the NICU, and is simply spending extended amounts of time with your baby resting comfortably on your chest.  It seemed to work very well, with Zach's breathing improving, and the number of "brady's" reduced to none.  Zachary's demeanor and restfulness both increased, and he quickly fell asleep for several hours.  He definitely enjoyed his rest with his new buddy Fiesta, the polar bear, as you can see above (Thanks Missy!).  
The plan for tonight is his first feeding in over 40 hours around 8pm, and he will get to breast feed with Mommy tomorrow when we are back at the hospital in the morning.   We're praying he continues healing so we can hold him and feed him tomorrow, that he will be off the air, and maybe we can make up for a little lost time with some more Kangaroo Care.  Our hope for a Friday trip home has been postponed now until Sunday.  All babies in the NICU must be "brady" free for 5 days before being discharged. So Zachary will not be home for Christmas, but we figure we'll still celebrate with him when he DOES get home, because honestly, he doesn't know the difference yet. We hope you all have a wonderful Christmas Eve, and a blessed time with your family.  With Love and Praise - Brian + Kimmie 

Monday, December 22, 2008

Back in the Fight

Surgery went wonderfully, and Zachary is well on the way to a full recovery!!
Today began with the anticipation of Zach's surgery, and the realization of our little guy having to be sedated and on a respirator yet again.  Daddy went to work for a short time this morning,  (a HUGE Thank You goes out to the staff at Boulder Country Club for being so understanding and accommodating during this whole ordeal) before he and Mommy drove down to spend some time with Zach before his surgery.    Since Zach was not fed after 4am he was fairly cranky and irritable for Valerie, today's nurse.  When Mommy and Daddy arrived, they were able to swaddle Zachary up and rock him to settle him down.  He soon fell asleep and was very peaceful and restful for 4 or so hours before the surgery.  
Around 1pm Dave and his daughter Brittney surprised us all by arriving at the NICU, and spending some much needed time with us.  It's great to have visitors, especially when you need to escape the negative thoughts and feelings that arise when things look a little bleak.  Shortly thereafter "Aunt" Jodee arrived and we all enjoyed passing the time and giving Zachary some much needed quiet time with Mommy and Daddy. The first three photos above are pre-surgery images of the three of us. 
Around 3:15 Dr. Handler arrived to discuss the surgery and what to expect going forward for Zachary.  After that the nurses arrived to prep him for surgery and Zach slept peacefully all the way up until they rolled him out to begin the procedure around 4:30pm.
Mommy, Daddy, and Jodee headed out to get some dinner, and arrived back around 5:45, with Dr. Handler coming out of surgery a short time later.  In his words the surgery "could not have gone any better."  What wonderful words to our ears!!  We are very excited.  They rolled Zachary back in around 6pm and it took about a 1/2 hour to get him all hooked up to the ventilator and and run all the pertinent tests.  The last two pictures above are of Zachary post operative.  Check out his little tongue sticking out! Zach had a shunt inserted in his head to relieve the fluid and pressure that results from hydrocephalus.  They made a small incision in the right rear of his head and ran the shunt down past his right ear, along his jugular vein and down into his abdomen.  It empties about an inch up and three inches right of his belly button. His body should naturally absorb the fluid that the shunt delivers to the abdomen. From he pictures above you can see a lot of wires and machines, but Zach is so strong and was doing so well before the surgery that they feel his recovery should be pretty quick.  If all goes as planned he should be off the ventilator tonight or early tomorrow (they even reduced the ventilator settings shortly before we left), then slowly be brought down off the pain meds as he heals.  He is cleared to move and feed in whichever way he needs, and our new day to hopefully bring him home is now Friday.  
Another day has passed and another major hurdle has been cleared in little Zach's road to recovery.  We are so grateful to God for the blessings he has given us thus far, and we pray he will continue to bless Zach in the future. Tomorrow is a new day and we look forward to seeing Zachary off the ventilator, and improving wonderfully.  Something about these overnight hours seem to inspire Zach to heal so greatly.  Maybe its the quiet of night, or the fact that he knows Mommy and Daddy love surprises, but for whatever reason, we're sure he'll brighten our day once we arrive at St. Joe's tomorrow.  Thank You All Once Again - Brian + Kimmie

Sunday, December 21, 2008

It's Not Over Yet

What began as a very exciting day, one we thought was the last before Zachary would come home, took a quick and sobering turn.  After attending morning mass, we arrived at the NICU around 12:30, and found Erin, today's nurse, feeding Zach a bottle.  Our upbeat mood was quickly changed when Erin informed us that Dr. Handler had moved the head ultrasound up to this morning, and after examining the results found that Zach's ventricles (portions of his brain) were swelling and the hydrocephalus had set in.  This means Zach will have surgery again tomorrow @ 3:30pm to insert a shunt.  The shunt will drain the excess fluid from his brain to his abdomen where it will be naturally absorbed back into his body.  We knew this was a 90% certainty going into his birth, but things had been going so well, and we were just hoping and praying he would be OK and could come home tomorrow.  They also informed us that an ultrasound was performed on Zachary's bladder and showed it still contained some urine, leading to the insertion of a direct catheter to relieve it.  One of the most common side effects of spina bifida is an inability or difficulty in controlling the bladder and bowels.  Zach had been urinating and defecating quite a bit all week, but it seems that he is not doing either completely, which can lead to infections. Sorry this is so graphic, but it's the only way I feel I can explain what we're dealing with.  
 We are unsure at this point when Zach will be able to come home, and our focus has turned to his surgery and healing tomorrow.  None of the information we were given today comes as a surprise, but it still caught us at a very vulnerable time.  Kimmie was able to breast feed Zach again this evening, and we finalized our plans for tomorrow, before heading home for the night.  We ask for your continued prayers and support, and will update Zach's progress tomorrow as soon after surgery as we can.  Thank You All again for your Love, and well wishes, and may God watch over and heal our baby boy once more.   - Brian + Kimmie