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.

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

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.

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.

Getting Used to Life in the NICU

Nothing can really prepare you for having a baby in the NICU (although the tour before hand was helpful in seeing the size of the tiny babies). As Hope and Grace entered their third week of life this past Friday Mom and Dad are getting increasingly used to the realities of the up-and-down ride that is life in the NICU each day. When visiting the girls there are a host of beeps constantly going off, a revolving line-up of doctors, nurses, lab techs, parents and visitors in and out of the rooms, pushing buttons, writing on charts, and looking intently into the isolettes. Babies too come and go- getting transferred to different rooms as they get bigger and stronger. We have become accustomed to the NICU lingo, and the countless acronyms that get thrown around each day- blood gasses, green residuals, ET tubes, de-sats, PDAs, "tolerating cares," and my personal favorite term, "stooling" have become new vocabulary words added to our ever-growing repertoire of neo-natology knowledge that grows a little bit more with each trip to visit the girls and each conversation with our doctors and nurses. Each visit begins with us picking up the beige phone and asking for admittance. Each visit ends with Jeni and I holding hands walking back to the parking structure, thanking God that we have each other and asking for His grace in helping get our girls home safe.

In the NICU the status of things change quickly, so much so, that updating this blog would be a near full-time job if we were to post on every new development that takes place throughout the day. As we get ready for bed on Sunday evening, Grace has been on and off of feedings twice and has gone on more assisted breathing, but, despite of all this, gained two ounces (she's now 2 pounds 2 oz.), gotten off of her "billi blanket" (which made her look like a glow worm... too bad we didn't get a picture of that) and was the most snuggly person in the world Saturday when Jeni kangarooed her for the second time. The PDA continues to linger for Grace, and, after tomorrow's echocardiogram it looks like Grace may indeed need the surgery. In many ways, Jeni and I have come to peace with that decision and just want things to move forward for her.

Hope, on the other hand, has been the tortoise in this race- slow and steady. She is still on the ET tube, has been on and off of feedings once, has gained five ounces (she's up to 2 pounds 10 oz. now) and loves to be held by her Daddy. Kangarooing with her for the second time on Saturday was the highlight of my week and a truly remarkable experience. I hope Jeni and I never take the gift of being able to hold our daughters for granted, as it is such a special experience for us both.

This week, no doubt, will bring us new vocabulary words and hopefully new progress for the girls. As Jeni put it optimistically, if the girls have until July 7th to go, we are about 10 weeks or so away. While that may seem like an eternity for us, the good news is, at least we're 2 weeks closer to them coming home than we were when this stage of the adventure began just over 2 weeks ago.