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