Mark's Last Post

It’s with mixed emotions I write this last post. Will's NICU journey is now over and we have moved to life’s next stage – and for that I am thankful. Nichole and I will miss however, sharing images of Will and receiving reassuring responses that greet our posts on mornings after.

The blog started as a concise means to update Will’s progress, but quickly evolved into a photo journal and outlet for expressing our fears, as well as joys. At times, posting was more therapeutic than reporting.

While aiming to document Will’s growth and various medical hurdles, I also tried to capture the raw emotion of our rollercoaster ride through intimate photos of Nichole and Will and thought it equally important to document the prodigious work of our nurses and doctors – to whom we owe the life of our child.

Will is home now and brightening up our house – with his infectious smile, his gas and his wailing! We slept very little the first night, as only holding him seemed to comfort his cries. Perhaps tonight will hold a different outcome. Considering the alternative though, we have no complaints.

In closing, I have one final message - to all of our readers, friends, family and loved ones – thank you, from the bottom of our hearts, thank you.

Will's Leaves the NICU

Will's Last Night in the NICU

Breanne's last shift with Will.

If all goes as planned, tonight is Will's last night in the NICU. Nichole and I are quite excited and have spent the better part of the last few days organizing the house and Will's room, buying last minute baby items and making trips to the NICU. As one can imagine, we are quite excited about Will's homecoming. At the same time however, we will miss our close NICU friends. We've become very close to a host of primary nurses and doctors. It will be odd not seeing these people every day, as they've become so much a part of our life.

Gearing Up ...

As part of the NICU release, babies must undergo a car seat check. Babies are placed in their car seat and monitored for a minimum of 30 minutes (or up to the time it takes the parent to travel the distance home). Because Nichole and I live 6 miles from the NICU (about 15 minutes), Will had to endure a 3o minute check. We are proud to announce that he passed with flying colors!

Liz on her final day with Will.

Will also had a second exam today - a ct scan. This scan is used to gauge the brain's growth and development. As the brain grows and matures around the 38th week of gestation, it begins to develop contours and indentations. During this time of additional development, problems that were previously undiscoverable may be revealed. This is particularly why the ct scan was conducted late in his NICU stay. Simply put, an earlier exam may not have revealed problems that developed at a later gestational age. Fortunately though, Will's test came back negative with no adverse issues.

Finally - the question of the week is ... when does Will come home? Currently, we are in a holding pattern for Wednesday. His food intake is monitored closely because he's lost a bit of weight. Nothing alarming as he's still around 6lbs, but consistent weight loss may delay his homecoming. So, as always with the NICU - wait and see. We'll keep you posted.

GREAT NEWS!!!!

Nichole and I received a double dose of great news today. In the early wee hours this morning we were informed that Will had grown tired of his ventilator and began tugging at the tube. Dr. Whitman gave the order and the vent was removed. Will immediately began breathing on his own and didn't skip a beat. By this afternoon the swelling in his face subsided and he began to look like the "pre-surgery Will." Obviously, Nichole and I are elated with his progress.

Second, we were informed that it is likely that Will will be discharged this coming week. As it stands now, Wednesday looks like the day. However, we were cautioned that this is still a day-to-day process, and as we've heard with other families, the release day can change at any moment and for a variety of reasons.

A big thank you to everyone for their prayers and well wishes. Nichole and I plan to sleep tonight.

Photos from today

Breanne, our primary day nurse and Anne (in blue), a respiratory therapist.

Recovery Update

Not much to report regarding Will's recovery from surgery. He's still on the ventilator, much longer than we'd hoped - now at 3o hours post-op. A significant amount of fluid has collected on his lungs, which the nurses remove via closed suction catheter. Morphine is still administered PRN (as needed). We are hopeful that Tylenol will replace the morphine soon.

And ... as I am writing - Will just woke up. His eyes are wide open for the first time since the surgery. Dr. Whitman has come over and requested that the ventilator be lowered to 25 breaths a minute. Will is actually breathing 45 breaths per minute, meaning that he's relying on the ventilator very little. This is a large step, one that Nichole and I are so glad to see. Obviously, we are keeping all fingers crossed! Dr. Whitman will be happy if he's off the vent by morning.

The past 30 hours have been quite difficult. Especially the last 29. In many ways, Nichole and I have hit the wall - feels like 76 days going on 4 years. Staying positive though. The last few minute's progress has us encouraged.

Post-surgery

Pre-surgery

Today's Surgery

Will's hernia surgery took a little over an hour this afternoon. He's doing well and resting somewhat comfortably. The hernia, not uncommon for premature babies, was located in the right groin area. The surgeon, during the operation, scoped the opposite side as well. We were told that premature babies with right side hernias have a 20% chance of developing one on the opposite side. Presently, there is no left side hernia. While fixing the hernia the surgeon also dealt with a hydrocele issue that's been plaguing Will.

As for the surgery itself, a general anesthesia was used to sedate Will. He also received a caudal block, which was applied post-op through his back, similar to an epidural. To keep Will comfortable throughout the evening he will receives doses of morphine and Tylenol. The morphine is given through his IV and the Tylenol is given through his OG (oral gastric tube).

Will also needed the benefit of a ventilator, and remains on the vent tonight. Doctors informed us that babies sometimes require the vent for only a few minutes, while others need it for several days. At this point, it is wait and see; but overall, Will is doing great!

GO STEELERS

GO STEELERS

Fridays with Will

Tonight is the 69th night we’ve spent at St. Vincent Women’s Hospital. It is also the 10th straight Friday night we’ve been here. The NICU is so ingrained in our lives that it is hard to imagine otherwise.

His progress however reminds us that with each passing night, we are closer to Will’s homecoming. His eyes are often wide open and he’s started making small smiles.

Tonight’s update: The nasal cannula was removed this morning and was reapplied during today’s feeds. During tonight’s 8:30PM bottle feeding we did not use the cannula. Will now weighs 5lbs, 11oz.

Checking in on Will ...

For those checking in on Will ... Will now weighs 5lb, 10oz. His preemie clothes fit rather snug - not a bit too big.

Today was vaccine day. Will received two vaccine shots this afternoon. Unfortunately, he did not respond well, resulting in several low desats tonight. The staff decided that re-starting the nasal cannula would help his oxygen saturation levels. Additionally, the added stress and discomfort wore down his body. He was unable to feed by either bottle or breast. We trust tomorrow marks a return to a cannula-free state.

I am including a note written by Charlie Pottgen. Charlie is the 4 year old (almost 5!) son of Wendy Pottgen, a co-worker of mine. Evidently, Charlie is quite a fan and enjoys seeing Will's pictures. Due to the scanning, Charlie's note may be somewhat difficult to read. It's important to know that Charlie's message to Will involves advising him on a variety of cool Wii games. Enjoy.

Thanks Charlie!

Will's Exciting Day

Will has great news - he's no longer using the nasal cannula! This means that Will is now breathing without some form of assistance for the first time since the first week of December. This is very exciting news and it's great to see his face without the cannula.

Will also made great strides with feeds, taking all his food last night and today by bottle. This step alone is a great indicator that Will may soon be heading home.

Speaking of his release, many of you are noticing Will's progress and have asked the question - "Will he come home soon?" This is of course a fair question, and one that Nichole and I addressed with Dr. Whitman last night. Dr. Whitman informed us that Will's ability to take 100% of his feeds by bottle or breast was essential to his release. The use of the nasal cannula was less of an issue and that some premature infants requiring oxygen are allowed to eventually go home. Simply put, Dr. Whitman felt that Will needed to kick the cannula, sustain his bottle feeds over a 5-6 day period and prove that the diuretic was no longer necessary. She felt confident that Will could leave the hospital in 3-4 weeks, and as early as 2 weeks (although this was less likely).

One complicating factor in Will's release was the recent discovery of a hernia. Will must undergo surgery early next week to repair the hernia, which involves sedation and a ventilator. The procedure should take about an hour.

Although Nichole and I remain very concerned (the words "surgery" and "your baby" are not exactly easily digested), we've been comforted by the doctors and nurses who've told us that hernia surgeries are fairly common for premature infants and that most babies do very well with the procedure. Please keep Will in your prayers and thoughts next week.

In closing, I wish to reiterate how excited we are about Will's progress. He continues to amaze his mom and me.

Bath Time

Will's weekly bath.

Saturday - January 24

Will remains on a steady track of progress. His growth and development amaze both Nichole and I. It's hard to believe that 60 days ago Will entered this world as a 2lb, 7oz, dark red, shriveled little baby. At that time he required a ventilator to breathe, was unable to regulate a consistent body temperature and his skin was so under-developed that he required a humidity controlled environment (due to evaporation water loss).

Today however, Will weighs 5lbs, 50z., feeds mostly from a bottle and comfortably withstands room air temperatures, while successfully regulating his body temp. His feeds have elevated from 2 milliliters (just under 1/2 a teaspoon) every four hours to 42 milliliters every three, although he is still medicated with prilosec (for reflux) and diuretics.

Will's breathing has vastly improved too. Even though the nasal cannula remains, the volume has decreased from one liter to .5 liter, and the oxygen percentage is generally set at room air (21%). At certain times the oxygen amount is increased, such as hands-on time and feeding, but the need for oxygen supplementation has decreased drastically.

Overall, looking back 6o days, it is hard to believe that Will has come so far. Nichole and I clearly see a light now and we trust it's the light at end of the tunnel.

In closing, we ask that you continue to pray for all the NICU babies, their families and the respective medical staffs - all amazing miracles in their own special way. We hope that you will also remember Mary Margaret Knight, daughter of our law school friends Hart and Stephanie. Mary Margret is due later this spring and will unfortunately be born with an omphalocele. This condition will likely require significant NICU time.

Latest News - 36 Weeks Gestation this Friday

Little to report tonight. Will continues to do well, weighing in at 5lbs, 3oz. His preemie clothes are starting to fit snug.

He has managed to maintain constant body temps and remains in the open crib. The isolette has been removed altogether from the cubicle. We are also using a bottle to supplement his feeds. He receives 40cc's of breast milk every 3 hours and is bottle fed on cue. When cues are not present, he is fed through a syringe pump. The pump time was reduced this past weekend from 45 minutes to 30.

Although his growth is slow, it is steady. Each day he becomes more alert and is beginning to respond to our voices and his surroundings.

Major Milestones ...

Will reached two major milestones today (1) he moved from his isolette to an open air"bassinet" and (2) he fed from a bottle.

Sustained body temperature is key to life outside the isolette. Babies expend great energy regulating their body temperature and by doing so burn through many calories. Will must prove that he can (a) regulate his body temp and (b) continue to gain weight. Should he be unable to achieve both requirements, he may spend additional time in the isloette. So although we are excited about this milestone, we must be aware that sustained crib-life may come in stages.

Bottle feeding is also a new experience (I included pics of Will's first bottle experience). He was a champ tonight, downing an entire bottle in about 25 minutes. For the foreseeable future, he will continue to feed from a bottle once a day. In the meantime he will continue to receive 38 milliliters of breast milk through the syringe pump every 3 hours (today the pump time was reduced from one hour to 45 minutes).

5LBS and a Big Win!

Will had a HUGE day. First, he received a visit from his Pfeiffer grandparents. He then experienced a big time win by the Pittsburgh Steelers. Will loves the Steelers and is obviously their good luck charm. He even draped himself in his Terrible Toddler Towel. Most importantly, Will broke the 5lb mark tonight. We can't get too excited though, as sometimes he loses weight after a large gain (he gained 110 grams tonight). However, we are certainly glad that he continues to make steady progress in weight gain.

What a great day!

GO STEELERS

Will wants to be a Super Bowl baby ...

Have You Hugged Your NICU Nurse Today?

Our primary nurses are the greatest! Day nurses include Breanne and Liz (who recently switched from nights to days) and our night nurses, Ashley and Natalie. These four ladies, with their extra special care for Will, make all the difference in our world. Not only do they treat each of us with special care, but they've gone out of the way by decorating Will's cubicle with scrapbook pages, crazy fun pictures of Will, mobiles inside his isolette, cartoon drawings, a special Christmas photo album and ornament, a New Year's Eve party hat and a baby's first stocking - complete with photo of Will inside the stocking. These special nurses stop at nothing to ensure that Will has the best of care and that mom and dad are very relaxed.

Most important, the primary nurses look after Will's health with the extra diligence. They know him better than the doctors. We are so thankful for their attention and care. Breanne, Liz, Ashley and Natalie - you are truly special people. Thank you.

Pictures: (1) Natalie and Will; (2) Breanne and Nichole; (3) Ashley watching Will; and (4) Liz and Will.

Tarheel

Confirmed - we discovered Will is a Tarheel...

Sorry Wolfpack fans.

Why Not - Part II

Encouraging words from #4.