Hope and Grace's First Montage

Enjoy this video montage of Hope and Grace's journey home and their first month. When you think about it, this journey is nothing short of amazing!

Grace Is Coming Home Tomorrow!

Hope and Grace are 74 days old today, and they have already taught Jeni and I so much. The lesson that we have been taught, above anything else is that LOVE triumphs over fear. As I mentioned in a previous post, the light of hope always burns and can ignite the other lights in our life. And, the light of hope cannot exist without the grace of God. How fitting, when I reflect, that our daughters at such a young age are already living their names.

For those of you who have been following this blog, we learned that Jeni was carrying monoamniotic twins back on February 2nd . At that time, Jeni was about 18 weeks into her pregnancy, and we were told we that we had a 50/50% chance, at best, of these twins being born. This news crushed us, and the countdown to "the best case scenario" of hospital in-patient stay began. We went through tremendous worry thinking about whether or not these babies would even make it until then. I recall, once the babies started kicking, that I asked Jeni to text message me or email me during the day to let me know that they were ok. This time in our lives tested our faith- are these babies going to be ok? Are we even going to make it to in-patient care? Thanks to love, we did.

On the evening of April 10th, Jeni and I had some tasty soup complements of our friend Lauralee and the Caring Ministry at St. Christopher's Church. Jeni and I set up the hard plastic bed-side table in the antepartum unit at St. Joe's and enjoyed eating our soup and watching the Brewers game (ok, at least Will enjoyed the game, Jeni enjoyed the company and the soup perhaps a bit more than the game :) ). The babies were falling off their monitors a bit more than usual this evening, but our nurses told us not to be too concerned. While the birth story is still in the works (it has just been hard for me to formulate it into words the way I'd like), I will share that on the morning of April 11th, I received news that would push my faith, hope, love and joy to the limits and back... the twins were in distress and Jeni was about to give birth. The nurses and doctors at St. Joe's who were able to detect that Baby B (now known as Hope) had a fluctuating heart rate that would dip way down, then come up a little, and then dip way down again. Jeni's doctors concluded that they needed to perform an emergency c-section in order to save the lives of these babies.

On the morning of April 11th, at precisely 9:37 a.m., our daughters, Grace and Hope, were born unexpectedly at 27 weeks 5 days gestational age. I recall the event like it was a second ago holding Jeni's hand in the operating room, crying, praying, and thanking God for each other and for the opportunity to be parents. We cried and prayed and, above all, loved.

Then came life in the NICU, an experience whose rapid high peaks and swift steep valleys I wouldn't wish on anyone in the world. ET tubes, PDA's, CPAPs, infection, on feedings and off of feedings, tolerating cares, not tolerating cares... you name it, we've been there and done it, and despite the intense burning fear that engulfed our minds, we felt an endearing love in our hearts that began to spread from beyond Jeni and I and our immediate friends and family into our greater community. Thanks in large part to this blog and the monoamniotic.org site, the community that supported us began to span across the United States and Canada, and into places like Australia and Japan, among others. Our story was out there, people were (and are) praying for us and thinking about us, and, guess what... our love began to grow. Love triumphs over fear, and, I truly believe, due to the love of so many people we are able to end our story as NICU parents tomorrow.

Nurse Rosie, in her sweet, optimistic voice, declared that Grace was "ready to go home" and simply needs to await the arrival of her apnea monitor and a few small check ups tomorrow morning. After I get done teaching summer school, we'll have lunch and then fulfill the dream I've had for so long... bringing my family home.

So, in closing, to reference the Okkervil River tune that served as an impetus for Jeni and me writing this blog in the first place, "our life is not a movie, but maybe." To go along with that, we'll reference our wedding song, "Love and Luck" by Jimmy Buffett, "with a little love and luck, you will get by." Granted, those two artists are so different from each other, but hey, that's "Life with the Pipers" for you in a nutshell!

For those of you along on our journey, thank you for your love. It has meant more to us than you will ever know. Please keep the prayers and good thoughts comin'... the next chapter of our life begins tomorrow.






Grace's last evening in the NICU... she seems restless and ready to come home.





Grace stares at her friend Bucky Badger. She can't wait for Badger football games this fall with her UW-alumni parents.

a walk in a NICU dad's Birkenstocks

I've had many people ask me throughout the past several months, "how do you do it?" referring to the major alterations having two children in the NICU (and before that a wife in the antepartum unit) can make on your schedule, psyche, and life in general. In honor of the many dads out there who have faced and/or are facing similar situations to Jeni and mine, I offer this post- a walk in a NICU dad's Birkenstocks. Being a dad during this whole process can be some hard and joyful work, but before we get to that, first, I must begin by commenting on my brown Birkenstock sandals. Just about anyone who I encounter during the months of May through October will notice that I wear by brown Birks just about every day when weather permits. My wife will not allow me to wear socks with them when it gets cold (there are few things that Jeni will put her foot down to, and socks and sandals is one of them). These sandals are somewhat beat up, but oh, so comfy, and it so many ways, oh, so reassuring. I got my first pair of brown Birks with the strap in the back when I was in high school. Now, three or four pairs later, here I am, as a 30 year old wearing, essentially the same footwear. Other shoes may be considered more fashionable these days, but I feel like my Birks and I have "been there, done that," and hence deserve mention. Even during uncomfortable times, I can count on them to keep my feet in a familiar state, and, metaphorically keep my balance.

Balance is the key to being a NICU parent. As hard as it can be, you can't let highs get too high or lows get too low. Each day since March 31st, I have made the trip to and from St. Joseph's Hospital at least once a day (and on many days two and sometimes even three times). The trip from our home to the hospital is approximately 10 miles long each way and takes between 20-30 minutes, depending on traffic on the city streets. Each day I take the same route, passing by a business called "Pest Supplies and Gifts" (hmmm, I have to go in there at some point, as I am curious to see what kinds of "gifts" can be found in a store that also advertises having roach and rodent killers). Each day I enter the parking structure and snake my way to the third floor. I park the car and walk into the hospital corridor. When it was cold outside, I was greeted with a large blast of warm air. These days, with their air conditioning cranked, an arctic chill gives me a shiver as I enter the hallway. I walk down the hallway with its purple and gray monotone carpeting past a knitted picture of St. Joseph and a a picture of a baby's head in a parent's hands. Then I pass the waiting room area and approach the NICU entrance. There I will find a beige 1980's vintage wall-mounted phone which I will pick up and be greeted with the same, familiar greeting, "St. Joseph's Family Care, NICU." I will introduce myself as Will Piper to see Hope and Grace, and will hear a mechanical "thunk" as the receptionist presses a button at her station that allows me to enter the ward.

I gulp and my heart rate always increases a tad at this point. I may know what to expect out of the sandals on my feet, but how the girls will be doing each day always remains somewhat of a mystery until I'm actually there. I walk down a wide hallway hearing the familiar "beep beeps" of the monitors. For most weeks until recently I made a left into the "sick baby" room where I would wash my hands and then proceed to stare yearningly into the isolettes of my daughters. These days I make a right into Hope and Grace's "suite." I still wash my hands throughly, and now am able to touch the girls more, pick them up, hold them, change them, and feed them. Still, there is no certainty as to what shape the girls will be in.

I've seen some pretty scary stuff. I almost fainted when Hope's foot early on was swollen and bruised badly due to the numerous pokes she had been receiving for the lab work that needed to be done on her. I saw the nervous look in Grace's eyes as the nurses asked us to leave as they prepped her area for her PDA surgery. I have seen my babies hooked up to a plethora of machines- intubation tubes, CPAP devices, the "flow driver," nasal cannulas, pulse socks and monitors. I have raced to the hospital after hearing that Hope had stopped breathing. I have asked a nurse, flat out, "is my daughter going to die." I have had a nurse draw the curtains around Hope's isolette as I broke down in tears balling, unable to finish reading "Goodnight Moon." With shoes on my feet, I've been there and done that.

I've seen some pretty beautiful stuff. I have cried tears of joy when I was first able to hold each of my girls. I have seen the girls more than double their weights from their birth up until now. I have seen Grace kick her little feet up and smile at her mom and dad. I have witnessed Hope's wide eyes stare at me. I have felt the tiny chests of my girls go up and down on top of my chest while we have "kangarooed." I have felt the tight squeeze of a tiny hand wrapped around my finger. I have laughed out loud trying (often unsuccessfully at that) to dress my daughters. I have felt the overwhelming sense of "WOW!" of feeding my girls a bottle. I have tried, unsuccessfully for the most part, to bait nurses into giving us further insight into when the girls will come home. With shoes on my feet, I've been there done that.

Over the past several months I've made over 100 trips to the NICU, traversed the drone purple and gray carpeting over 100 times, walked past the St. Joseph wall hanging over 100 times, wished that I would be holding Hope and Grace in my hand over 100 times when I pass that picture, and heard the metallic "thunk" of the NICU door opening over 100 times.

With all of this in mind, however, there is a light at the end of the tunnel. Tomorrow we get to go and spend a night with our daughter Hope as a "trial run" for her coming home. As I write this blog, Jeni is putting the finishing touches on the nursery and says it's 98.8% complete (pictures will be forthcoming). Grace had her best day of feeding yet- I am really getting the knack of bottle feeding her. With my first Father's Day coming to a close, I thank God for the blessing of my daughters, and my own dad and the love of so many friends and family. I also thank God for teaching me the value of looking at the big picture and learning to stay in balance, during good times and bad. Perhaps as a NICU dad I realize that Father's Day isn't really just about one day a year to celebrate, it's about the whole journey of raising kids and the countless memories you have with them throughout their lives as you watch them grow.

a rainbow after the storm

The weather in southeastern Wisconsin over the past week has mimicked our NICU stay. One minute it is sunny and beautiful with the crisp breeze off of Lake Michigan making the smell of petunias and fresh cut grass waft into our living room. The next minute, the sky turns gray and storm clouds roll overhead like stampeding rhinos on the Serengeti Plain, bringing with them fierce lightening, loud claps of thunder, and buckets of rain.

My first week of summer break involved non-stop cleaning and organizing of the house in preparation of our daughters' homecoming. Jeni and I are working feverishly to get things ready, as we have been told by our doctor and Nurse Barb, our primary nurse, that Tuesday is the day Hope is likely to come home. Granted, this is not the Father's Day homecoming that we were hoping for a week ago, but I am proud to say that I will, more likely than not, have the chance to watch a Brewers/Blue Jays game with Hope in my arms. I'm sure our friends Susan, Gord, Aaron and Emily in Canada will smile knowing that the first time the "Brewers Fan Dad" enjoys a game with his daughter will be against their American League rivals from north of the border.

On a more serious note, life in the "intermediate room" recently has not been without its share of bumps in the road. Yesterday things were not so fun. Hope had trouble, alarming frequently and dropping her heart rate. While feeding her yesterday, she began to choke and turned blue. Nurse Mary was able to revive her quickly, but this still scared the living daylights out of me, and made me, for the first time, start feeling a bit nervous about the prospect of caring for a premature baby (and hopefully babies plural before too long). Moreover, our doctor yesterday ordered renal ultrasounds for both girls because of a concern over high blood pressure and kidney functioning. Kidneys? What!? ! This was the first time Jeni and I heard anything about this. Thank goodness by the end of the day yesterday, we learned that the results of the renal untrasounds were "unremarkable" indicating that there were no foreseen problems with the girls' kidneys, and that the blood pressure just needed to be watched carefully over the next several days. Both girls, for what it's worth, had lower blood pressure today.

Just like the severe weather that ravaged southeastern Wisconsin recently, these bursts of unpleasantness were relatively short lived, but intense nonetheless. Despite turning blue briefly yesterday, Hope is still on track for a Tuesday discharge. Gracie has increased her feedings, and, with a little love and luck, will not be too far behind her sister. She just needs to gain weight consistently and move up on her feedings. She is already up to nippling 5/8 feedings, so I don't think she should be more than a week to ten days behind her sister.

Until then, Mom and Dad will spend the remainder of hopefully their last Saturday night together as a two-some living in our house attempting to put together Rainforest Bouncey Seats and decorating the babies' room in preparation of brining our family home.

To close, when Jeni came home from the hospital tonight (driving through another series of thunderstorms that rampaged through our area) she called me outside to show me the magnificent rainbow that arched over our backyard. For us, this served as a visual illustration that after a storm sometimes God can bless us with a thing of great beauty. Hopefully, this metaphor will live out in our lives during the upcoming week.


A beautiful rainbow viewed from the Piper patio.







Jeni lathers up Baby Grace during her bath.





Baby Hope is now on "on demand feedings" (gosh, that sounds like a Time Warner Cable commercial). We learned from our most recent call to the NICU that she took 50 ccs at her last feeding! "Big Beefy" is getting ready to come home!

2 Months old- Look How We've Grown

Yesterday Hope and Grace turned two months old in the NICU. It is amazing how much these girls have grown in such a short amount of time. While the past 63 days have seemed like an eternity for Mom and Dad, when thinking globally, it is such a short amount of time.


Grace's first photo, being weighed at 2 pounds even moments after her birth on 4/11/08.






4 pound 1 ounce Grace on 6/11/08. She is looking mighty cute if I do say so myself, and her face is now way bigger than her "nook."








Two moths old and Gracie is still as feisty as can be!









Hope in her isolette hooked up to her ET tube at 2 pounds 5 ounces on 4/11/08






Hope rang in her two month birthday on 6/11/08 with literally nothing aside from her monitor attached to her. She is breathing wonderfully all by herself. She weighs in at 4 pounds 10 ounces and is now nippling 5 our of her 8 feedings.





Today I got to bottle feed both girls and they both did fabulously, nippling both of their feedings. This put a smile on Dad's face bigger than the Brewers taking 2/3 against the Astros. FYI, all of the nurses (and most doctors) know me in the NICU as the "Brewers Fan Dad." If you click on the pic, you can see Hope suckling her empty bottle. She really seems to enjoy her feedings.










For some reason, writing this post and thinking about the amazing progress our girls have made thus far got the Laverne and Shirley theme song stuck in my head (ok, Jeni and I are suckers for old '80's sitcoms). Enjoy- for some reason this opening makes me think of the countless blessings that are to come with twin daughters.

A Preview of What's to Come?

Everyone says that a baby is a ton of work, much less two babies. I have to be quite honest, while in my head I know that this fact is true, I am not sure that I really believed it. After all, babies are cute, they sleep most of the time, and you get to do fun things like push them around in their stroller waiting for adoring strangers to come and gush over them.

Well, babies are cute, they seem to sleep a lot, and for now, the nurses at St. Joe's are gushing... but they are a lot of work. And, I don't even really know the reality of this yet. Tonight gave me just a small taste for what is coming down the road, much sooner than we think.

A timeline of tonight's events:
5:15 Arrive at the hospital. Adore the girls for a bit and admire Hope in her new open crib. After about 5 minutes, Grace is screaming about something. Where's the nurse? What does she want? Give Grace her pacifier only to find that the pacifier is not at all what she wants. Where's the nurse? I finally decided that she may need to be changed (or was hungry, but I can't really get that going without the nurse's ok). Her diaper contained what appeared to be her weight gain from the last two days full of pee. The doctors decided to give her a diuretic today and I can attest to it's success. No big deal here though. Hope was wide awake to greet me and show me her blue hands, sending me into a small panic. All was well, as the rest of her is the right temperature, thank goodness. The open crib presents Hope with the challenge of keeping herself warm enough to function and thus far, save her hands, she appears to be doing well.

5:35 The nurse arrives to check on me and the girls. She gives the go ahead to feed Gracie. It takes me about ten minutes to set up, remove Grace from her isolette, etc. Will arrives and greets us, changes Hope, and gets her out for a little Daddy time.

5:45 - 6:00 Feed Grace.

6:00 - 6:15 Burp and cuddle Grace before passing her off to Daddy.

6:15 - 6:45 Try to wake the previously chipper, hungry-looking Hope. I enticed her with food, patted her gently on the back, tickled her under the chin, but nothing. She had absolutely no interest in being alert enough to feed. But I wasn't about to give up that easily, nor was the nurse. After all, these girls have to learn that they have to do a little bit of work in order to get their tummies full. The nurse came over to help. Together we stripped Hope down, thinking that she was too cozy and warm in her sleeping bag. Nope. Nothing. I enticed her with food again. Nada. I convinced the nurse to let me try for five more minutes and I finally annoyed her to the point of awakening her.

6:45 - 7:15 Feed Hope. Now all of the books say that when you're breastfeeding, the child will eat what she wants and stop when finished. Ok, I believe these experts writing the books and let Hope go as long as she wants. Nurse Ashley comes in periodically to check, pleased as punch that Hope was still at it. After about 30 minutes, twice as long as Hope usually eats, she decided that she was finally full and quits. After I take her off, she acts like she's still starving, but I used my better judgment and tried to give her a burp rather than allow her any more food. Will had already left to make dinner and it was well past the time that I was supposed to leave for the nurses to make their report. As Will left, he muttered that I was going to be the one to have to change her nasty post-feeding diaper tonight.

7:15 - 7:45 Change Hope's diaper, clothes, bedding. As I held Hope for a few minutes she emitted some sounds that would make my fifth grade boys proud. Then I felt poop #1 make it's entrance into Hope's diaper. I found myself making a lucky move putting a cloth diaper under her tush just after that little present came. A few moments later, poop #2. I decided that it was time to put now-stinky Hope back into her bassinet and change her. By that time, Hope's poops had come out of the top of her diaper, which rides up almost to her neck, through her onesie, and onto the cloth diaper. Upon changing her diaper and outfit, the poop got everywhere else, including my hands, her cords, her feeding tube (eww!) and her hair. Then, while getting new clothes and diaper, Hope's feast of a dinner made a second appearance. Luckily this time, she was only wearing a diaper, but it did manage to get all over her teeny body, bedding, and of course, my hands. With Ashley's assistance, I got Hope all cleaned up, into a new outfit, back into her sleep sac, and bundled up. Meanwhile, Hope looked thoroughly entertained by the whole scene, while making some "I ate too much" groans. I checked on Grace, only to find that she too, had spit up all over herself and her blanket. Recognizing my bewildered look, Ashley offered to take care of Grace so that I could get home for my late dinner.

All together, feeding and changing both girls took the two of us two hours and fifteen minutes. Given that their feedings are just three hours apart, I realized that this does not leave much time for anything else. Oh boy, babies are a lot of work!

Gracie's First Bottle

Many people say that their children are the first thing they think about in the morning and the last thing they think about at night. For us, this is literally the case- as we always make a habit of calling St. Joe's to check on the girls right before we say our prayers and go to sleep and as soon as we get up in the morning.

Today we awoke to good news- Gracie drank her first full bottle at 6:00 a.m. this morning. With Hope's first bottle last Tuesday, both girls seem to be adjusting well to their status as "growers and feeders." Both girls are now taking two nipple feedings a day (either via bottle or breast feeding). One of the prerequisites of the girls coming home is for them to eat all of their food in this manner, so they are certainly well on their way.



Gracie and her mommy enjoy some quality snuggle time this afternoon.







Hope takes a snooze with her daddy after he burped her for the first time. You'd be surprised at the loud noises these little people make!

The Princesses of Power

I need to take a deep breath right now, as I cannot stop smiling for a number of reasons. First off, I just finished watching an incredibly fun Brewers victory over the tough Arizona Diamondbacks, and I didn't think anything could make me happier than the huge monster shot Prince Fielder hit to put the Brewers ahead for a 4-3 victory.

(photo taken by thewongsrx from the Flickr creative commons)


Then Jeni and I called the hospital.

Gracie's new pink Brewers blanket must have brought out the slugger in her (see the picture of her napping below!) Gracie Girl pulled out the come-from-behind victory today, gaining an unprecedented 100 grams in weight. To put this in perspective, she now weighs 3 pounds 10.7 ounces. This would mean that Maggie the dog would need to consume 20 Tasty T-Bone treats to illustrate that weight gain. Needless to say, feeding Mags that many treats would result in more than an upset tummy for her (so we're not even going to go there :) ).

Not to be outdone by her sister, Hope is on the verge of becoming our first 4 pounder at 3 pounds 15.2 ounces! Talk amongst the NICU doctors and nurses has shifted from the oxygen needs, PDAs, heart stuff, head ultrasounds, and digestive complications to "getting their room ready" and the girls being waved on home. Hope, too, is being indoctrinated into the world of her parents with a Brewers blanket on top and a Bucky Badger sticker on the window of her isolette. All she needs now is a Favre jersey and her Wisconsin sports experience will be complete.

While we know that there are likely to be set backs ahead, it feels good to be on a winning streak.

Growers and Feeders

There are two words that long-term NICU parents yearn to hear for many weeks- those words are the terms "growers and feeders." For the non-NICU parents that read this blog, the title, "growers and feeders" is given to babies whose respiratory and digestive challenges have resolved themselves to a level where they no longer require constant monitoring, and they just have to "grow and feed" in order to graduate from the NICU all together. When Nurse Rosie told us that our girls were officially "growers and feeders" Saturday afternoon I almost broke down in tears out of sheer joy.

Hope and Grace are now both off of the nasal cannula and breathing the same air you and I are right now. Their heart rates are monitored and they are watched closely. However, as they have matured, they have also been weened from many of the interventions they had earlier. They no longer need daily blood gas work. Jeni and I can take them out of their isolettes and put them back in all by ourselves. Gradparents are allowed to hold the girls' hands. Both girls are learning to breast feed with Jeni (and are doing a great job at that). We get to hold them without them being hooked up to monitors. Best of all, as of today, both girls were moved out of the "sick baby room" into the "intermediate room" in the NICU.

The intermediate room was referred to by the nurses as a "suite," and for good reason. We are now in a room with windows, rocking chairs and no beeping machines. Babies in this area are on their way home. One fella across from the twins is actually leaving to go home tomorrow or the next day, leaving Hope and Grace with even more room in their "suite." Check out Hope and Grace's new window view. Pretty snazzy.

Thinking about the girls moving into the intermediate room made me think about a classic TV show theme song that deals with "movin' on up"- the Jeffersons. Thank goodness for YouTube, you too can hear this jingle and have it stuck in your head for the next several hours.



While we are not out of the woods yet, this has been a momentously positive weekend in our long quest to bring our family home. Gracie is now 3 pounds 6 oz. and Hope is 3 pounds 13 ounces. Let's keep on growing and feeding girls, it's already June!

Enjoy some of the wonderful moments we shared with the girls.



Hope (aka "Big Beefy") takes a snooze in her isolette by the window.







Gracie Girl enjoys the bright new surroundings of the intermediate room (and her mom and dad looking at her)



Gracie has the hiccups and then sneezes. It is amazing to watch how quickly these girls are beginning to grow, even by comparing this video to the ones last week!

Memorial Day

Today was a gorgeous day in every aspect of the word. First, as Memorial Day is often considered the "kickoff to summer," today was as summeresque as any day we've seen here in the Milwaukee area in quite some time. Temperatures rose to the mid-eighties and a beautiful breeze rustled the new leaves on the trees. Today was a day when you thank God to be outside. In our neighborhood the smell of charcoal drenched in a bit too much lighter fluid wafted above the roof tops as families grilled and played in their yards. I saw moms, dads and their children on bike rides together, parks filled with the gleeful smiles of little kids on swings, and a plethora of dogs sauntering along the side of the road, tongues hanging out, on one of their many walks.

Today as I planted the pachasandra around our house and listened to the Milwaukee Brewers defeat the Washington Nationals in extra innings, I reflected a bit about the past five days. Last Thursday I got the phone call that Hope was not breathing on her own and had to be put on the ventilator with nasal prongs. Friday we heard that she had a staph infection. And then things began to turn around. Today, Hope is down to 1.25 L on the nasal cannula, has her feedings increased to 24 ccs, and the doctor ordered that her main-line IV be taken out. Hope, once again, came through in the clutch! As parents, we are emotionally exhausted from the weekend. When people say having kids in the NICU is a roller coaster ride, they are not kidding- the lows get pretty low and the highs, pretty high. Trying to keep our wits and a sense of balance during this time can be increasingly challenging for the both of us these days. We are so grateful that little Hope seems to have turned the corner. When we think about Hope's success, it is important to realize how there truly is a team of people (nurses, doctors, Jeni and I, our parents, family, relatives, our spiritual leaders- Scott and Jan, our church community, our school communities, "face-to-face" friends, "cyber friends" who read this blog, etc.) all of whose talents, kind thoughts, and positive energy are helping Hope, Grace, Jeni and I get through all of this.

This brings me to something else that really hit home today. Tomorrow (May 27th) is our 2 year anniversary. While there are so many images that stand out from that day, what still blows me away is how St. Christopher's Church was packed to the gills and how the balcony was filled with lots of Jeni and my students, past and present. At one point in the service I remember Scott, our pastor, asking "will you (the congregation) support Jeni and Will as a couple?" and a loud cry from the balcony yelling "WE WILL." As we watch the video of the wedding, this part gets me choked up because it is so true. As this Memorial Day comes to a close, let us take a moment to remember how important it is that we, as people, have each other. The kindness of strangers, the love of friends and family, the talent of nurses and doctors and the support of our extended community means more than you could know. As we turn into an "old married couple" at two years, we have learned that not only are we supported as a couple, but we have grown and are supported as a family. We WILL get through this.

A New Hope...

There are few sounds that are more piercing than the scream of your child when you know she is uncomfortable and in pain. Friday evening and throughout Saturday, it was this scream that haunted me. Hope wanted nothing more than to get the nasal prongs and ventilator apparatus off of her, and would expend great amounts of energy screaming and whacking the device with her forearm. While we found it encouraging that the nurses applauded her increased pep, it was rather obvious to all that she was not happy. Compound that with the staph infection and you have a double-yuck for our "snuggle pumpkin."

However, as we've mentioned numerous times before, things change quickly in the NICU. Yesterday evening when we called before we went to bed, Hope was having a fit and the doctor on duty decided to give her a try back on the nasal cannula. When we called to check on her this morning Nurse Kim said that she was "loving life." The anitbiotics seem to be doing the trick on the staph infection and when we visited with Hope today she was on room air with the nasal cannula at 1.5 L, pretty much where she was before she got sick. What was even better is that Dad got to hold Hope for over an hour, a new holding record for her. While in Daddy's arms, Hope emitted a low rumbling groan and immediately afterwards a foul odor. Yup. I should mention that her digestive system is working just fine these days too :).

While Thursday and Friday had a Darth Vaderish feel late Saturday into Sunday ushered in a new hope.
"Who is this goofy guy?" Baby Hope thinks to herself as she looks up at her dad.

T.G.I.F. ???

Fridays used to be my favorite day of the week- the day that ushered in the weekend. Back in college we would have a group of us that started a little get together that we coined, "The Friday Afternoon Session." In the warm months we'd gather at the Memorial Union Terrace and in the cold months at a place called the Kollege Klub (or K.K. for short) in Madison. There we would relax, shoot darts and pool, catch up and often times have a fish fry. It was a great way to end the week.

After I became a teacher, I think I began appreciating Fridays even more. Fridays would be the day that would involve getting together with fellow co-workers and other buddies after work for a round of golf, or Texas Hold 'Em, or even coming home and enjoying a fresh breeze coming through the window and a much needed nap after a long week. Not to mention, "Retro Fridays" at Miller Park are always fun times to bust out vintage Brewers gear and cheer on the Crew. Yup, those were the Fridays.

Recently, Fridays have brought with them an almost "Darth Vaderish" feeling. When I ironically turn over my Star Wars desk calendar from Thursday to Friday I begin to hum Darth Vader's famed "Imperial March" in my head and wonder what the day will bring. As the 5th and 6th grade Dean of Students at my school, Fridays are often times the days when the kids choose to be a little naughtier than usual and the days where teachers and students are more likely to call upon me to help solve problems and resolve conflicts. The thing I enjoy the most about being the Dean in addition to teaching is helping students with their problems, so this certainly is not all bad. This same skill that may make me effective with 10-12 year-olds yields me utterly useless when it comes to my own daughters. If I can resolve conflict with "tweens," why can't I help make my preemie daughters better? Inquiring minds want to know.

Today I must have spent about 2 hours just holding Hope's tiny hand, telling her that she was a "little champ." I felt like I wanted to say to Hope in my best James Earl Jones Darth Vader voice, "Hope, get better... I'm your father." To her credit, Hope did do something that took a huge weight off of my shoulders- she started to breathe more independently. I was so proud of her (as was Jeni). It is amazing how we take this vital skill for granted each day. While the ventilator is doing most of the work, Hope is managing to breathe on her own now a bit and not rely entirely on the machine. She also seemed more spunky and "with it" compared to her cathartic state from the day before. The nurses mentioned several times how she looked and acted better, and this made me feel a little more reassured that she was not in as bad of a situation as I feared she might have been in yesterday afternoon.

The bad news today is that we learned that Hope's challenges are due to a staph infection. We don't know to what extent this infection has affected her. We hope that we can figure out more information this weekend.

While I may be able to help students when they have challenges on Fridays, I, unfortunately was unable to do too much aside from being supportive to help Hope today. Perhaps that just what she needed, though. Good news is that there are doctors, nurses and a wide range of antibiotics that can help her, and hopefully will. Dad just wishes sometimes that he could take out his light saber, beat the bad guys, and protect Hope (and Grace) from the "dark side of the Force," and get them well enough to come home.

As we officially have made it to the 6 week mark of being NICU parents, the question still looms, "when will this ever end?" "When will Fridays be fun again?"

Three Steps Back...

Today started off well. It was a crisp, sunny morning, and I drove to school in my black Pontiac Sunfire (which is in need of a bath), listening to Phish with the sun roof open. Nothing like a beautiful spring day and some good old tunes that I enjoyed back in high school and college to make you smile and enjoy life. Some 8th graders were doing a spoof of the television show, The Office (which, along with Brewer games and assorted Discovery Channel specials amounts to the majority of my tv viewing), and these students managed to twist my arm into playing the role of Jim in their digital video project. Some other good faculty friends of mine were portraying the roles of Angela, Dwight and Michael, among others. What a fun idea, I thought to myself, and a nice way to connect with some former students before they venture into the high school.

My phone rang at 9:30 a.m. with a 447 exchange, signaling that it was the hospital. Our doctor called stating that she thought that Hope might have an infection and therefore decided to do a series of tests. She mentioned repeatedly that I shouldn't be alarmed (in all seriousness, she is a very sweet woman and did the best she could not to cause a certain sensitive dad to get anxious and upset about his girls). This was comforting as best as it could be, and I finished up my classes and school business and then called back for an update. Here is where the story turns for the worse. While the initial tests came back negative, Hope had a series of frequent apnea alarms and landed herself off of the nasal cannula. The nurses/doctors switched her back to the CPAP system, but that, too, did not work for Hope. So, where we ended up is with Hope on the ventilator with the machine doing her breathing for her. Little Hope got pooped and decided not to breathe on her own at this point. When I got word of this Jeni and I began to fear the worst and traveled to St. Joe's to be with our daughter.

Hope did not look like herself. The wide-eyed cheeky monkey was sullen and pale, eyes shut and laboring to breathe with the machine making her chest go up and down. Her hands felt clammy and she looked wiped-out. The nurse who was taking care of Hope was so sweet and rubbed my back a bit until Jeni arrived moments later (while I do my very best to "hang in there" and be strong, I just lost it at this point). The doctor on duty came over and mentioned that he thought that Hope had a low grade infection, but didn't appear to be critically ill. He thought that a likely source of infection is the IV line in Hope's arm. He started Hope on a series of general antibiotics to try to combat anything that could be bugging her, and mentioned that if indeed this is an infection, it may take weeks for her to start coming around. Oddly enough, while I had never met this doctor before, he mentioned his son playing on a Little League team with a current student of mine and knowing that student's family. The power of connection, as I mentioned way back when in an early post is so huge, and one of the reasons why Jeni and I chose to put our story out here. While this doctor was originally a stranger, hearing how he was connected to mutual friends and his gentle smile made me feel ok with knowing that he would be keeping a watchful eye on our little girl.

How fast things change! Yesterday was family picture time- and less than 24 hours later, here we are with one of the most challenging days we've encountered since our girls entered the NICU 6 weeks ago tomorrow. Thank God that these girls are in such a good hospital with doctors and nurses who care about them. Thank God that, if Hope does indeed have an infection, that there are systems that can be put in place to combat it as best as we can. Thank God that Grace gained 50 grams (or 10 dog treats worth of weight... I've learned with two babies in the NICU that you need to take the good with the bad). Thank God for Maggie, our dog, who has sat by my side and let me pet her soft silky coat and scratch behind her ears while I write this. Thank God for all of you who are reading this who will continue to hold our family in your prayers. Thank God that tomorrow morning will come, and regardless of the weather or the choice of music, I'll put one foot in front of the other, keep my chin up, and get ready to face another day.

Gracie Is Stylin'

When we arrived at St. Joe's this evening, Gracie Girl was wearing a purple onesie.This was her first full day with clothing, since she no longer has her IV. Right now, Gracie is sporting the "loose fit" look, although we are hoping that her sense of style changes throughout the next few weeks, as hopefully she'll be able to grow into her outfits a little more.

Both girls seem to be making slow but steady progress. Both are increasing their feeds and taking "preemie baby steps" to decrease their oxygen settings. The wonderful nurses at St. Joe's indicated that we might be able to have our first family picture with the 4 of us together sometime this week, possibly as early as tomorrow. What a blessing that would be (and just in time for Jeni and my 2 year anniversary on Tuesday too!)

Not one to be outdone by her sister, Hope looked particularly snuggly this evening as well, sucking on her oral cares wand like a sucker and sticking her tongue out. In the picture to the right, she looks like she belongs in one of those Budwiser commercials from a few years back where people (and animals) would say "WAZZUP!" Regardless, biased Mom and Dad are tickled pink (no pun intended, given Hope's pink hat) with how well both girls seem to be doing recently. It has been such a blessing to have a winning streak of fairly uneventful days in the NICU. Each day brings these girls one day closer to their homecoming, and for that we all have reason to smile, laugh, marvel and rejoice.

10 grams for Gracie!

The girls kept on trucking today. When we arrived at the hospital this evening we saw Gracie dressed in a little outfit that was way too big for her little 2 pound 11 ounce frame. We both got a real kick out of looking at her, but quickly came to the conclusion that something was missing- her IV! Gracie is now off of that and down to .5 L on her nasal cannula. We were told that she has gained 10 grams. While not much, this is certainly a preemie baby step in the right direction for her. Hope also went down to 1.5 L on her nasal cannula and was able to get to the 10 cc feeding mark today, so a good day for both girls. Mom and Dad left the digital camera at home, but hopefully will be able to snap a few photos of Gracie in her outfit for tomorrow. Until then, enjoy this video of Maggie and I honoring Gracie's weight gain with some Tasty T-Bone dog treats. After all, this is "Life with the Pipers" and Maggie is a big part of that!

5 Weeks Old!

Hope and Gracie made it through their five week birthday this weekend in fairly uneventful fashion. As has become typical of life with kids in the NICU, there were accomplishments, setbacks, unanswered questions, and, above all else two girls who continue to mature, develop and act as cute as ever, as evidenced by Gracie gripping her passifier in the photo to the left.

The nurses believe Hope is having trouble with reflux (this is similar to bad heartburn or acid reflux in adults). While there is no real cure for this, it is something that we were told that most premature kids outgrow by the time they go home from the NICU or shortly thereafter. Getting above the 10 ccs of milk hurdle has been a real challenge for Hope. She has made it up into double-digits on her feedings a couple of times only to have monster residuals and be brought back down. With all this in mind, however, she has managed to gain weight and is officially a pound heavier than she was 5 weeks ago when she was born. Hope is now a whopping 3 pounds, 5 ounces. Here she is below looking extra snuggly as she checks out her surroundings in the isolette. This girl is very alert and wide-eyed to say the least!



As for Gracie Girl, she has been dubbed a "wild child" by some of the NICU nurses, and for good reason. Gracie is an active girl and has been known to crawl out of her blanket and reposition herself in her isolette. Yesterday during her kangaroo session with Jeni, Gracie literally jumped off of her mom, and Jeni had to catch her! This made Gracie cry and squeal like you wouldn't believe. Today she tried to climb up me while we "kagarooed. " There is a lot of strength and power in her little legs I'll tell you! Unfortunately, while Gracie is making great strides with her respiratory progress (she is now on the basic nasal cannula, not the heated one), she is still losing weight and has not made it past 2 pounds, 11 ounces. The nurses and doctors are now beginning to fortify her milk with extra calories to try to get this girl to gain some weight. I think Gracie might do well to have a few personal training sessions from Hans and Franz- they need to "pump, her up!"

Nasal Cannula Photos

Enjoy some new pictures from today. Hope and Gracie had great days- both of them are doing well on their nasal cannulas and are just being sweet as can be.


Here Hope models her fuzzy pink hat. Mom and Dad think it makes her look particularly cute and cheeky.


Gracie Girl takes a snooze. Notice the Bucky Badger in the background (Mom and Dad's alma mater).


Jeni looks especially beautiful holding Baby Hope. This picture was taken when our friend Nurse Patty from the antepartum unit stopped by to say hi and visit with us and the girls.


Dad enjoys some quality time holding Gracie Girl. She has started sucking on her fingers and pulling on her nasal cannula.


A short video of Daddy holding Gracie in her too-big pink hat.

Hump Day?

When I played football in high school I had a coach who would motivate us by making up funny names for days of the week to coincide with practices. The hardest day of practice was always Wednesday, which Coach Forti affectionately termed "Hump Day." This was the day when we had to do the most grueling drills- "legendary abs," "superman runs," "the pit drill," hitting the blocking sled countless times, offense practice, defense practice, special teams, you name it. While exhausted at the end of the "Hump Day" practice, I always felt a sense of relief and pride of having accomplished something great, and knowing that the next day would be just a tad easier.

When I called the NICU this morning, I was hoping to hear that the girls were doing well, expecting to hear that they were doing fine, and braced to handle a complication or two. This is the general mindset that I have to get in when I call to check up on our daughters. What I got today was a bit of a shock, but in a pleasant way. Around 11:00 this morning, Baby Hope had suddenly jumped from level 5 of the CPAP to the nasal cannula like her sister. Woah, where did that come from? Just days earlier we busted out the Mr. Yuck sticker based, in part on Hope having some respiratory challenges on Friday... now here she is on the nasal cannula. This came as a pleasant surprise. Moreover, Grace's feeds have increased to 17 ccs and she is scheduled to go up from there. Hope is now back up to 9 ccs, plugging away, as always, at her own pace. While both girls' weight gain has been halted temporarily due to them both being on diuretics, we are seeing progress. These girls are making "preemie baby steps" as they mature each day.

As I visited with the girls tonight, I got another unexpected treat. I held Hope for about 15 minutes at first (her hold was cut short due to some desats), but then got to hold Gracie as well after Jeni had finished holding her for over an hour (a new record). I also got to watch Gracie take down her "Hungry Man Dinner"-sized portion of milk and have her first burp with me present. It was hardly the loud Animal House belch I was expecting, in fact she didn't even make a sound, just let loose some bubbly milk and then seemed to look more alert and happy. I never knew a burp could be so adorable.

Being able to hold both girls on the same day marked the first time this has occurred since Jeni held them right after they were born. It also marked the first time that it really hit me that I am blessed with twins. By early July I hope to be able to experience the joy of holding both girls each and every day, and hopefully for more than just a few minutes at a crack.

Are we over the hump yet? I think it would still be too early to say yes. However, in a small way, I feel that, like Hope and Grace, we're all (Mom and Dad included) making "preemie baby steps" on our way to getting there.

You Know You've Been a NICU Parent for More than a Month When...

Keeping with the theme of how time moves so slowly (or ridiculously fast depending on how you look at it) tonight we started thinking about all of the new knowledge we've acquired in the past 5 weeks of being a parent with two babies in the NICU. Seriously, we learn something new every day.

You know you’ve been a NICU parent for over a month when…

• You have the phone number for St. Joseph’s Family Care NICU engrained into your memory.
• You have the route from home to hospital memorized and have stopped using the GPS to get there months ago.
• You are on a first name basis with multiple nurses (and know who’s on the day, afternoon and night shifts).
• The nurses (and doctors) realize how big of a Brewers fan Hope and Grace’s dad is and engage in long conversations with him about baseball.
• You start thinking about turning the high and low oxygen saturation beeps into some creative hip-hop beats.
• You speak in sentences frequently using terms like desats, blood gasses, CPAP levels, gavage tubes, PDA, apneas and bradycardias and know exactly what each of these things are.
• If your baby spits up a large amount, you refer to it as an emesis.
  
• “How did she stool?” is among your frequently asked questions.
• Green becomes your least favorite color (even if you’re a Packer fan). (note: "green goo" from the stomach indicates problems digesting, so this is a bad thing)
  
• ET no longer stands for Extra Terrestrial (it refers to the entertrachial tube used for breathing support).
• A 15 cc feeding of milk sounds like Grace is taking down a Thanksgiving feast, (even though it the equivalent of 1 tablespoon).
• Washing your hands every few minutes becomes the norm, not the exception.
• Full term babies look enormous, even if in reality they are only 6 pounds.
• You are used to seeing your kids hooked up to a myriad of wires and cords.
  
• You learn how important it is to “tolerate cares” and “tolerate feeds.”
• You cross your fingers every three hours and pray for “no residual.”
  
• Holding your babies, even for a mere 20 minutes becomes the absolute, positive, highlight of your day and something you live the other 23 hours 40 minutes for.