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.

Will's Progress - January 15

Will continues to make excellent progress. He weighed in tonight at 4lbs, 11oz, spending the majority of the day at 21% oxygen/room air (the air we breathe contains 21% oxygen). The nasal cannula remains employed however and is set at 1 liter. We hope to wean him to 3/4 liter by early next week.

Will also had an eye exam today, resulting in no evidence of ROP (Retinopathy of Prematurity). Breanne and Natalie (primary nurses on day and night shifts) are shooting to have Will in an open crib by next week. If all goes well over the weekend we hope to have him out of the isolette by Monday.

The picture above was taken by Breanne his primary day nurse. This picture and others were taken while his nasal cannula and food tube were undergoing replacement. Thanks Breanne! We love the pics.

Late-night update

Will continues doing well. Tonight he weighed 4lbs, 5oz and is a tad bit over 16 inches long. He continues to struggle with reflux (and is now taking prilosec) and still experiences periodic breathing. At times he has "rock star" numbers but at other times worries the heck out of his parents.

Please continue to keep Will in your thoughts and prayers. He's doing super but still has a long way to go. We also ask that you remember the other NICU babies too. They are amazing little miracles.

How Does Will Go About Gaining Weight?

So what goes into Will's weight gain?

Feeding is obviously an essential part of the NICU experience. Babies born to the NICU are fed in a variety of ways depending on their gestational age and ultimately their development stage and overall health. Some babies receive nutrients through a TPN (total parenteral nutrition, which is supplied via IV) while others receive breast milk through methods such as a bottle, syringe, syringe pump or through breast feeding.

Will currently receives 34 milliliters of breast milk (fortified with extra vitamins that add 24 calories) every 3 hours via syringe pump (on 11/26/2008 he was receiving 2 milliliters every 4 hours). The pump releases breast milk slowly over one hour, helping reduce reflux issues that often face premature infants. The pictures show the process of removing a food tube from Will's nose and replacing it with one placed through his mouth. A part of the NICU feeding process involves checking milk residuals from each feeding. During hands-on the nurse will withdraw through his feeding tube the contents of Will's stomach using a syringe. The left over milk is measured and recorded. This "used" milk is then added to the new dose and readministered with his feeding. The used milk can actually aid in digestion. See picture.

This week Will began learning to feed by breast. Babies do not develop the sucking/breathing/swallowing skill until about 34 gestational weeks of age; Will's age as of Friday. The first couple of tries resulted in exactly what the lactation consultant (or lactologist as Mark says) said would happen--he latched on, took a couple of sucks and then stopped for a bit. He then took another couple of sucks and stopped again. During this practice time, the nurse delivers his milk through a feeding tube so that he associates his belly filling with nursing. Will still needs to figure out what happens when he sucks and learn that he must work for the milk. This is a huge step for him. It is also good for us as it allows Nichole to take on more of his care.

Why Not

Will had some special visitors tonight. They brought a simple message, sure to remain with him for life - "Why Not."

Mike & Lara, Thank you

7 Wednesdays

For the record, yesterday marked Will's 7th Wednesday and our 7th week in the NICU. In many ways the experience seems like one long day, yet at other times it seems like years. Fortunately, Will is steadily growing. He is a little over 16 inches long, having grown an inch, and he now weighs 4lbs., 3oz. You might notice that his features have changed, his legs are beginning to add weight and he's out grown his little red hat. Visitors often say that he looks "HUGE." Not sure he's exactly huge, but anyone that saw him a month ago would easily notice his growth.

Tomorrow I am posting a small excerpt that details his feeding.

Monday Afternoon

Will had a great day yesterday - rebounding nicely from a challenging weekend.

He gained back an ounce and now weighs 4lb, 1oz. Hooray! Overnight, he held a steady oxygen saturation rate with 23-26% oxygen supplement. This is an improvement over last week, whereas he needed 30% oxygen. One day at a time.

Sunday Medical Update ...

Quick medical update Will is having a pretty good day. His breathing and desats continue to fluctuate somewhat. Overall though, he's having a much better time than last night. As mentioned in prior posts, his weight is down from Saturday. He is weighed each night between 7 and 8 PM, so we should know more in an hour or so. Due to the diuretics, it would not be odd to see additional weight loss tonight.
Current Meds -
Lasix (diuretic) - one time dose
Aldactazide (diuretic) - twice daily
Caffeine - daily
Ferrous Sulfate (iron supplement) - daily
Sodium Chloride (sodium supplement) - daily
Issues -
Lung fluid and additional fluid in the extremities and groin
Cause - unknown
Treatment - diuretics

CLD/Periodic breathing, shortness of breath
Cause - prematurity and lung fluid
Treatment - maturity/growth, diuretic, caffeine

Weight - 4lbs even

Feeding - 32ml every 3 hours per food tube

We both go back to work tomorrow - we'll continue to juggle hospital visits with real life as best we can. We look forward to the distraction of employment. NICU life is nothing short of amazing - incredible people, staff and stories. Will is in a good place and we look forward to the day we can bring him home.

The Sun Came Up

I am pleased to say that after a trying night we woke at 6:30 AM to the comforting words of his night nurse, "Will had a great night, with steady breathing and very few desats ..." It's a great way to start the day.

When Will was born we were were told by a close friend (a daughter born 3 months early) "buckle up, it's a roller coaster." Sometime shortly after, Dr. Simon (SVWH neonatologist) calmly told us late one night, "[T]his is a roller coaster ride, keep buckled up. We'll tell you when it's okay to unbuckle." To put it plainly, and as the previous blog posts might suggest, these people were right.

But wearisome nights bring new days and this morning's call brought a sense of relief under a sleepy smile. Each night we call the nurse for a report just before falling asleep - it's the last thing we do each day. We call again at 6:30 AM right before the nursing shift change.

Keeping family and friends updated on Will's progress was the impetus behind the creation of this blog. It also serves as an outlet for our feelings and more importantly a mechanism to describe the sights, sounds and emotions of Will's journey. We've already received a number of emails in response to last night's post - thank you.

As we've stated many times, Nichole and I are truly blessed. Will is in great shape given the circumstances. Your emails and messages mean the world to us and we are comforted by your words. Again, thank you.

Subjective Observation

I learned as an English major 20 years ago that writing effectively about poignant topics requires emotional separation. That is why I primarily craft objective posts. I am moved tonight however, to share a bit more about my experience and observations - subjectively.

After 10 days of consistent but gradual gains, our emotions were tested again. Will lost 1oz today, likely the result of an increased dose of diuretics. More concerning was his inability, over the past four hours, to stabilize oxygen saturation levels above 80 (desat), even with a 35% oxygen supplement. This condition seemed to worsen when Nichole and I held him.

These emotions are new to me - helplessness for the endangered child and the guilt of being helpless. I was also torn between optimism and pessimism, as I watched Nichole wrestle with her own emotions; she - like me before -was unsuccessful in bringing steadiness to Will's respiratory rate.

As Will's oxygen saturation levels dropped to their lowest of the night (40's), we held him swaddled in blankets across my knees, our hands together on his body, trying to calm him as his little chest pounded up and down rapidly, pulsating at rates over 100 times per minute. Nothing we did slowed his breathing. The severe desat episode lasted for approximately 30 minutes, the alarm flashing red and buzzing loudly overhead every 10 seconds. I hate that sound. I felt pain in my stomach and saw Nichole's in her eyes.

We are fortunate to have such great care and tonight's nurse stood by us the entire evening. She monitored Will closely and increased his oxygen in an effort to stop his desats. Eventually, he was placed back in the isolette and his breathing slowed to a lesser pace. At last report, about 1:50 AM, he was "sat-ting" in the 90's, well above the 80 that triggers an alarm. The roller coaster continues.

Back to objectivity tomorrow.

33 Weeks and 4LBS ...

Will tipped the scales at 4lbs 1oz on Friday, his gestational 33 week birthday - marking the 5th consecutive day of weight gain. Nichole and I are cautiously optimistic that the weight gain is nutritionally based and not just excess water. Will has regained a bit of puffiness, but nothing like he was shortly before Christmas. Due to low sodium levels and the resulting sodium supplement doses, the option of increasing his diuretic amount was previously dismissed. This weekend we should learn more regarding his sodium level and the potential for increased doses of Lasix.

Will continues experiencing periodic breathing, although less frequent in occurrence. We are excited however that he regulates his body temperature outside the islolette (with the aid of clothing) and that he recently began using a pacifier with much vigor! These are both big steps for a preemie's development and essential to Will's ability to come home.

Nichole and I are doing well. We are continuously encouraged by the outpouring of support and love from our many friends. There is no way we can thank each of you enough. We realize that this time of year is extremely busy and that many of you have your own life challenges. The fact that you've taken time to check in on Will means the world to us.

Thanks to all...

Happy New Year!

(brought to you by Will and Liz, the NICU nurse)

Thank you Liz, what a great surprise! We love it.