Gracie, Her Daddy, and Diapers

I am so proud of my daughters these days. What fighters they both are! Hope is learning, slowly but surely, how to breast feed. Gracie is a bit behind her sister in that department, but has remained off of the nasal cannula and today earned her way off of the foot band which keeps track of her oxygen saturation in her blood. On top of all that she now weighs 3 pounds 3 ounces and seems to continue to gain a little bit each day.

Gracie also has had a great time recently playing tricks on her dad at changing time. It is becoming popular lore in the NICU that Gracie likes to leave me "treats" in her diaper. This week I have gone 4/5 on having "#2" to change. Being the spawn of Jeni and I, Gracie has already begun to show her creative side, and while we want to encourage and foster this for years to come, I am hoping the bathroom creativity will cease and desist sometime soon.

However, in my heart, I have a funny feeling that I have my work cut out for me. Gracie has managed to go to the bathroom out the sides of her diapers and likes to look at me wide-eyed while I clean it up. She has peed on me now twice while I try to change her, again looking at me oh, so cute with her wide eyes. The grandparents of another child in the NICU get the giggles every time I go to get a diaper, because they know that I am in for another adventure.

Despite all of this, I am not one to cause a stink. Sure, I'll emit a "WOAH!" when I open up the preemie Pamper and find a "surprise," or, when she pulls her most infamous stunt of resuming going to the bathroom in the midst of being changed, but in so many ways this is such a blessing. Our girl is digesting. She is acting like a baby, and, while gross, it is something you just deal with and make the best of. After all, do you think someone who is this cute could make a mess? :)

Happy Anniversary

Happy 2 year anniversary!


Today the word that best sums up today is, "WOW!"

Wow! Jeni and I have been married for 2 years. Wow! Our girls had an exceptional day. Grace and Hope each gained 20 grams (which puts Grace over the 3 pound mark- technically she is 3 pounds 2 ounces). Gracie Girl went off of her nasal cannula too, (that means she is breathing without any additional support). Perhaps even more remarkable was the fact that Hope drank her first full bottle of milk (this surprised Mom, Dad, Nurse Nicole, and even Dr. Wolf... she just seemed super-hungry at her feedings according to her nurse, so they gave it a try and she succeeded!).

Two years ago to the day, Jeni and I danced our first dance as a married couple to the tune of "Love and Luck" by Jimmy Buffett (ok, we'll admit it, we are Parrot Heads... see photo from Buffett '08 to the left). To quote our wedding song, "With a little love and luck you will get by." Perhaps it was luck. We know it was love. And we are confident that our family will do more than just get by.

Our 2 year anniversary present from our girls was a series of simple, yet remarkable accomplishments that made us give thanks for the countless blessings in our lives. Enjoy the pictures and video and keep up the good work girls!




Nurse Nicole decorated Hope's first bottle. She drank the whole thing on the first try. This surprised everyone! Way to go Hope!







Gracie Girl looks extra special cute without her nasal cannula.








Dad and Hope try to make the same face.








Baby Gracie looks so sweet with her hand tucked under her head in her isolette. Awww.




Grace enjoys her pacifier.


Hope is a cutie in her new video.

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.

Together Again

Tonight was a big night for the Piper clan. Gracie got to make the big trip over to Hope's isolette and visit with her. Granted, they both fell asleep almost immediately upon her arrival, but Mom and Dad were sure happy to have our whole family together! Enjoy some pictures of the family.

Dad holds his darling daughters

Mom and her girls

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.

The Passage of Time

Time is a funny thing. On a Monday morning, the week seems eternally long but then by Friday, I always wonder where the week went. Similarly, in September, I look at the calendar for the school year, plotting a meeting in January, a field trip in May, thinking that it will never actually come. All of a sudden, it's the middle of May and we're left with only 23 days of school (not that anyone's counting). Yesterday was Grace and Hope's one month birthday. Where did that come from? As we chatted tonight with the NICU nurses, I couldn't help but think about this last month. Looking back, it appears to have gone fast. At the same time, I considered Grace's surgery, which is just shy of two weeks ago. It might as well have been two months. Days seem like years in NICU time.

Small picture wise, we're still struggling to cope with how long everything seems to be taking. I know that the girls have to take baby steps (or should I say preemie baby steps), but it's a challenge for Mom and Dad to see the progress in day-by-day mode. It is for any parent though, isn't it? All of a sudden, you realize your child has grown several inches over the school year and you didn't even really notice it. It's hard to watch, too, as countless babies have come and gone in the time that we've been there. In the past week alone, we've seen at least five new arrivals, and four departures.

In the big picture, the girls have made quite a bit of progress. Our Gracie is approaching the three pound mark, catching up with her sister who has apparently decided to go on a diet and lose a few ounces. Grace is up to 15 milliliters of milk per feeding. Three mL is approximately .5 ounces, three teaspoons, or one tablespoon. That means, for eight feedings per day, she is eating nearly 1/2 cup, equivalent to a serving of ice cream (as if anyone actually eats only one serving of ice cream...). Hope is at about half of that amount, or 1/4 cup per day, which is four whopping tablespoons, which is about how much milk I put in my morning coffee. It's pretty incredible to think about the amount of time it has taken them to reach this point!

As I work on the nursery that Will keeps reminding me I have a long time to get together, I feel the urge to try to get it finished (no small task for an expert procrastinator, mind you). I just know that the girls will be home before we can blink, but why then is it taking so long to get here?

Jeni's First Mother's Day

After some ups and downs this weekend, Hope and Gracie decided to ring in their first Mother's Day by being extra special mellow for Jeni (and I). Hope had no alarms, and has gradually increased her feedings throughout the day. Grace, too, has increased her feedings. Jeni and I visited the girls twice- once in the morning and once in the evening. In the morning we discovered that the NICU nurses had made cards from the girls for their mommy. I took pics and uploaded them here, as the cards are just too cute (and also contain the only pictures we have of the girls without any sort of head gear since birth). God bless the NICU nurses for their kindness here. Those cards and pictures are such a special gift that we will always cherish.

To top it off tonight, Jeni and I each got to kangaroo with the girls for over an hour and a half. Hope burrowed into Jeni like a mole and Gracie girl got to kangaroo with her dad for the first time. Her little arms reached out to hug me, and I fell asleep in the chair feeling her soft chest going up and down as she breathed. She was so good kangarooing that her doctor chose to leave her on the nasal cannula instead of putting her back on the CPAP. Jeni and I simply looked at each other as we left St. Joe's tonight, with a mutual twinkle in our eyes and smirk on our lips. Gracie today, acted like Gracie- jumping ahead of the game, eager to do something new with reckless abandon. Hope acted like Hope- slow, steady, wide-eyed and gentle. Jeni acted like a mom- taking pride in her children and cherishing them, the greatest Mother's Day gift of them all.
Baby Grace's Mother's Day Card 2008

Baby Hope's Mother's Day Card 2008

A day later... a microcosm of life in the NICU (and life with the Pipers for that matter)

Saturday morning started off rough. Hope had another "major alarm" Friday evening which required her to be "bagged." Neither Jeni nor I slept well from the events from the day before, and we both took this news hard and began to panic. We went to the hospital early in the day and spent time with both girls. Our nurses said they were doing fine, but we wanted to see the girls for ourselves.

Saturday was the day of Jeni's shower. My mom's close friend and her daughter (who incidentally is marrying one of my best friends) wanted to do something nice for Jeni and offered to throw her a shower. They decided to do this back in December, back in the days when we thought that there was only one baby who would not arrive until sometime in July. Well, little did anyone know back then that there were in fact two babies, and those babies were monoamniotic twins, and Jeni would require in-patient stay in the hospital before these twins were born, and that the babies would come earlier than anyone expected, and that they would be in the NICU at the time of the shower and have a rough day yesterday, leaving us overly worried to kick off our Saturday and the day of Jeni's shower at that. Ugggg! Needless to say, however, despite the shower, Jeni's mind was busy reeling about the status of Baby Hope.

Meanwhile, back on the home front, I was doing the household chores while Jeni's father attempted, for the second Saturday in a row, to install a ceiling fan and light fixture in the nursery. This project threw a few curve balls to my father-in-law, but by the end of the day, the ceiling fan was installed and working just fine. The whole experience reminded me of a somewhat slow moving episode of Home Improvement, with my father-in-law playing the role of Tool Time Tim, and me playing the role of Wilson- a guy who can talk a little here and there, but really is out of his element when it comes to home repairs. Being physically dexterous and handy are not gifts I was given, so I am very grateful that my father-in-law knew how to do this task (although I do feel bad that what we thought would be a 2 hour project led to two weekends of considerable work and countless trips in and out of our filthy attic).

We all ended up going to the hospital again at the end of the day to see the girls. I arrived first and got to hold Hope for 20 minutes. Despite having her feedings decreased and even stopped for a while, she had a relatively calm day, and I was able to hold her, her wide eyes looking up at daddy as she made some cute little noises and opened her mouth periodically to yawn and stick out her tongue. She did well with the hold, and was on room air for 15 of the 20 minutes. This was so awesome. While holding Hope I asked her very nicely to please not "act up" this evening and told her how much I loved her. Our doctor was on call and he explained that these "bagging" issues are indeed typical, and something that we will see happen from time to time. Our doctor assured us that Hope's lungs sounded fine to him and that her color was good, and that she didn't have as bad of a Friday as we perceived her having. He mentioned nothing about the possibility of the ductus being open again- so I think "The Ductus Strikes Back" is on hold, at least for now.

Jeni and I said goodbye to her folks, called my folks to give them the update, and then went out for pizza. We returned home and almost immediately fell asleep, completely emotionally drained and exhausted. It was perhaps the first time since middle school that I had not made it past 10:00 p.m. on a weekend night, but, feeling so drained, it was just what we needed.

Sunday morning: We overslept going to the 8:00 church service as we forgot to set any alarms being exhausted from the day before. The first thing we do is reach for the phone to call the NICU. Nurse Rosie had Grace and told us she had a great night- no alarms and her feedings are up to 13 ccs (get this girl a membership in the clean plate club). When we hold Grace later today she will be placed, for the first time ever, on the nasal cannula. This is a step in the right direction for her for sure. As for Hope, she had no alarms in the night! I can tell already that she listens well to her daddy. Her feedings are decreased, and she's still having residuals, but less than what she had the day before and no green goo. Perhaps she just needs a little rest. Before we hung up, Nurse Rosie garabbed the phone to wish Jeni a happy Mother's Day from Gracie and Hope. Jeni beamed from ear to ear. This little act of kindness already has made our day, and as I wrap this post up, all I can think of is "here we go again." Wishing everyone who reads this today a very happy Mother's Day.

A Yucky Friday

Today was a yucky day. It feels weird typing that, as I like to look for the positive in things, but when it comes to summing up today it would probably be easiest and best to just put one of those green Mr. Yuck stickers on it and call it quits.

The day started off with a yuck. Hope needed to be "bagged." For those of you unfamiliar with NICU jargon, "bagged" refers to when the nurse has to get out the oxygen bag with the squeeze ball to help give the baby extra air when their normal oxygen support system isn't doing the job. This apparatus looks like the oxygen bags that are supposed to come down from the overhead compartment in the airplane if trouble arises. This morning was the first time that Hope needed to get "bagged," and I think that alone got our cheeky friend up on the wrong side of her isolette.

After a day of desats and residuals, capped off by a 7 cc residual at 9:00 this evening, we end Friday with little Hope increased to level 6 on her CPAP (she was down to level 5 for the past two days), being held on feeds, and on extra caffeine and a diuretic to help her lungs. Hope's nurse this evening was very calm and told me not to be alarmed by this, citing that this is typical preemie behavior and something that will happen from time to time. She mentioned that the ductus might have reopened on Hope and that issues might be going on again with that. The ductus? I thought we were done with that with Hope (and Grace for that matter). Am I living a bad Star Wars parody, "The Ductus Strikes Back?"

I looked at the nurse tonight while we were visiting, and told her that I was just plain worried. She responded with, "Sure you are and you will be when Hope's 21 years old; welcome to being a parent." I feel like I have been well-inducted into the parent club of worry so far and needless to say, will continue to be for some time. The only saving grace to all of this is that, as a person who prides himself on systems thinking and problem solving, it seems like the medical team has seen this sort of thing before and has plenty of systems that can be used to help Hope overcome these hurdles.

Speaking of "saving grace," our Gracie Girl had some trouble with residuals too. Double yuck! Her feedings are being held to 10 ccs, but, considering that she has increased her amount by 10 times more than what she was eating a week ago, I feel that she is making progress. My last report on her stated that she had tolerated her feeds better than earlier in the day. Perhaps she'll come from behind like the Brewers did tonight and rally for the Piper girls.

On a side note, this evening I had the pleasure of watching the play Seussical the Musical performed by the middle school children at University School. I had quite a few of my current fifth grade students involved in the production, and also taught the vast majority of the cast in previous years. Watching the show made me think a lot about where I will be in 10 years, and, more importantly, where will Hope and Grace be? Will one or both of them want to participate in a musical and smile from ear-to-ear like my students (past and present) did tonight when they received their standing ovation? Will Hope or Grace want to run spot lights or serve as part of the stage crew? No pun intended, seeing that the play was Seussical, but "Who" knows?

One of the songs in tonight's performance featured cast members Horton, Jojo and the Cat in the Hat, among others, singing about how "a person's a person no matter now small." I guess, to wrap up today, all I can say is Amen to that.

Mommy and Gracie

Jeni got to hold Gracie for the first time since her surgery last week (which seems like decades ago at this point). Being Dad I felt the need to switch to video mode on the camera to catch some of Gracie's funny faces. We also had the opportunity to have our first picture of me, Jeni and Gracie. We hope to do likewise with Hope this weekend.

Mommy & Gracie

Back to School

After the alarm went off this morning and my hitting the snooze button did not send me back to dreamland, I arose to face today: my return to work. I was mostly nervous about going back to my classroom with 24 wide-eyed fifth graders trying to understand why their teacher had a couple of babies three months before they were due. Luckily, the parents did a nice job explaining everything so the questions were more about how the babies are doing, what they're doing at the hospital, and when they're coming home. Pretty much the same questions that I answered all day for the adults as well! When I got to school today, I was hug-attacked by several fifth graders. What a warm welcome that certainly helped give me that warm fuzzy that I needed today! The day was just as hectic as I imagined with my morning filled with science fair projects, kids finding a place for their supplies (hmm... where should that frog go?), parents dropping kids off wanting to hear about the babies, an altered schedule, etc.

Just as I was feeling pretty good about being at school and confident that all was well with the girls, and right in the middle of a student's science fair presentation, I hear a child announce, "Mrs. Piper, your phone is vibrating!!!!!" When he went on to peer at my phone (which I do not normally leave on during the day for obvious reasons) sitting on my desk , as my "just in case" precaution, and said our doctor's name, my heart skipped a beat. The kids occupied themselves as I went to take the call, which, thank God, was just a quick update that the girls were doing well. Whew...

Apparently later in the day, Gracie decided that she was not a happy camper. Our little one had a nasty green "spit up" (which is the gentle way of describing what she did). Will immediately thought of The Exorcist when hearing of her episode. Luckily her head did not start spinning around and we had no need for an old priest and a new priest. Later, she decided that she liked her food a bit more, and ate with nothing green coming out of her belly, at least not through her mouth. Will had the privilege of handling that little gift from his daughter while I held Hope tonight. I certainly hope that the duties remain the same for when they come home!

3 Pound Hope!

It seems like so little... yet it is so much. Hope, who has been the larger of the two babies from the get go, weighed in at 3 pounds even today. I swear a good chunk of that has to be going to her face which is cheeky as ever. Even Nurse Shawnda commented about her cheeky disposition this evening. Perhaps in honor of now becoming a full "3 pounder" Hope rewarded her daddy with a full diaper when he did her cares. Jeni stood by watching (and perhaps chuckling a little) as daddy did his second "eventful change."

I held Hope for a half hour this evening, and nearly fell asleep rocking her. She had a few desats along the way, but overall continues to make progress each time she is held. One thing I've noticed about Hope is how she loves being in her comfort zone. Snuggle her up tight in her isolette with her blanket wrapped around her little arms and legs and she'll take deep breaths and be in room air or low oxygen. Mix up her routine a little and she'll get nervous and desaturate a bit. This is all normal according to the nurses. As we approach the one month mark in the NICU, and dealing with a lot of ups and downs so far, I have come to grips with the fact that these things just happen and are developmentally appropriate for preemies. I'm not too terribly worried.

Gracie Girl had an uneventful day. She laid on her back sleeping while we visited tonight. Hopefully tomorrow Jeni can hold her. She, too, has increased weight and feedings. She now clocks in at 2 pounds 10.5 ounces, and is starting to get cheeky (although not quite as much as her sister). She is now up to 7 ccs of milk and has small or trace residuals, so she's on the right track too. To think that her surgery was a week ago tomorrow, it is truly amazing how far Gracie has come in just 7 days.

Increasing Feedings and Diaper Drama

Hope and Grace had another good day today. For some reason, it seems like the girls are making huge digestive strides in a short amount of time. They both are up to 5 ccs of breast milk. Now, this sounds like barely a sip for you or I, but is 5 times larger than their 1 cc feeding last Friday. They had minimum to no residuals today and are likely to see their feedings increased once again. You go girls!

We arrived at the hospital this evening early enough to do both girls' cares. I changed Hope who had a rather uneventful diaper, dropping my poopy diaper batting average to 1/9 or .111. Jeni, on the other hand, chose to change Gracie. Gracie started off a little fussy for her cares, and it didn't take Mom and Dad long to figure out why. Gracie produced her first "two-diaper-wonder". While Dad found this extremely amusing, Mom didn't find it quite as funny. I am sure that my time will come soon enough.

Jeni had the pleasure of holding Hope this afternoon, and I got day 3 in a row with Gracie. She and her daddy are bonding and she got to wear her pink hat again today.

While we know that there will be more bumps in the road ahead of us, we both rejoice in the fact that the girls are on a hot streak right now (now if only the Brewers can turn things around :) ). We are so incredibly blessed to have so many people praying for us and supporting us and our daughters. Thank you all for reading and following our story and thank you all for your support.

Wide Eyes and Pink Hats...

Today brought with it more holding time. Jeni spent a half hour with Hope resting her snorkel-covered head in Jeni's arms. Here she is with her beautiful eyes looking up at her mommy, being cute and cheeky as ever.

Daddy got some time with Gracie Girl again today. This time I held her for close to an hour. She seemed to enjoy the stylish pink hat that Nurse Mary put on her. It matched her dad's pink polo.

Both girls continue to amaze Jeni and I. Both have increased their feeds, lowered their vent settings, and had a great Sunday. We pray for more holding time and an uneventful week for our two little champs. Days like today really make prayers of thanksgiving so powerful and meaningful.

Holding Time

While our daughters continue to have their share of ups and downs (as Nurse Karen put it last evening, we're still in the "hour-by-hour" stage), we were blessed to be able to hold the girls this weekend again. Jeni got to hold and kangaroo with Hope for the first time. Hope loved being with her mommy and tried several times to literally climb up Jeni. She even managed to raise her head. It is amazing how strong she is given her size. I see that she takes after her mom in this department already.

After 3 long weeks and 1 day, Daddy finally got to hold his Gracie Girl, and this certainly capped off the week as the highlight. Gracie enjoyed resting her little head on her daddy's elbow and even ate her 2 ccs of breast milk while in Daddy's arms. I am amazed at Gracie's independent spirit and determination. She had PDA surgery on Wednesday, was off of her breathing tube and on feeds by Friday, and doubled her feeds and was held by her dad on Saturday. Gracie's biggest challenge thus far has been that her independent spirit gets the best of her and can cause trouble at times, as she tries to do too much too fast. For instance, she hates the nasal prongs and pulled them off while being held (I was told this occurred regularly with her throughout the day, and she ended up giving herself a bloody nose in the process). I keep having people tell me, "wait until she's a teenager." Frankly, I can't wait!

Pooped!

As Hope and Gracie enter their third week of post-womb life tomorrow, all I can think of is how pooped Jeni and I are. I know I've said it before, but the NICU is a giant roller coaster ride, prone to take unexpected twists and turns at any given minute.

Grace seems to be recovering from surgery well, although it's still too early to give her the "all clear" on the operation. We are very thankful that all signs are pointing in a positive direction with our "Gracie Girl," however. She visibly looked better today than we've seen her look in a few days. While sill sedated on the pain medication given to her after her operation, she was able to give my pointer finger a vice-like grip for about 10 minutes straight when we were visiting with her today. I love how tight she likes to hold on to my fingers and how she does not like to let go.

Hope, on the other hand, had an unusual day. While still on her feeds (1 cc of breast milk every 6 hours), she had 8 apneas/bradycardias from 7:00 a.m.-6:00 p.m. YIKES! To fill our gentle readers in on these two new NICU vocab terms, apneas are basically when the baby forgets to breathe, and bradycardias are when the baby's heart rate drops. While these are listed in the chapter titled, "Typical Problems of Preterm Babies and Other Sick Newborns" in the Newborn Intensive Care: What Every Parent Needs To Know (2nd edition) book that our doctor gave us, the idea of our daughter forgetting to breathe makes Mom and Dad, in particular, a little on edge.

The funny thing is, however, that every day seems to pose these sorts of battles for Hope and Gracie as well as the countless joys of having them here. While we could sit and dwell on the apneas/bradycardias, we could just as easily dwell on the fact that Hope is starting, slowly but surely, to gain some weight and her cheeks are starting to puff up like a squirrel storing nuts for the forthcoming winter. It's too adorable for words (see picture below). For the time being, I've nicknamed her my "cheeky monkey." I just hope that this little monkey can remember to take deep breaths.



Here I'm washing out my "cheeky monkey's" mouth. I was told by the nurse that it tastes minty. Hope likes it a lot :) The "snorkel mask" is her CPAP device to help her breathe.