First time NICU Parents

I wrote this for a friend who's sister in law just had a micro preemie (25-28 weekers) and was asking us for advice on the process.  I thought I'd share this on to anyone who might google preemie help or NICU information.  A little back history, my wife delivered our twin girls at 28wks. Baby A registered as a 25 weeker (550g) and Baby B registered as a 28 weeker (640g).  Baby B had a 2.5 month NICU stay at Le Bonheur Children's Hospital and Baby A had a 9.5 month stay, leaving with a G-tube and a trach + vent support. Both babies have been home since Oct. 12, 2011 and we are currently still on vent and MIC-KEY but in active trach trial procedures.

Here's a blog on NICU parental advice:

Advice.

1) Don't be afraid to ask questions and have doctors explain what something means. If they aren't willing to explain things, find another nurse or doctor who will. You are your child's best advocate and you should try your best to understand what things are happening to your baby.

2) Don't google everything they say. Most of the things that might come up in some of the growth and development of the baby will be generic terms or broad diagnosis and when you start to google things that are that broad you get lots of general explanations and or really gruesome pictures that don't apply to your baby.

3) Do google things like medicines and specific diagnosis. You will gain a better understanding of why and how certain things work and affect your child.

4) Get to know your health care professionals and build a relationship with them. They WILL become life long friends. You WILL see them a lot. Be attentive to those that work well with you and those that don't and figure out why to both.

5) Be available as much as you can when it comes to being interactive with your child. Use compression care as often as possible whenever they are doing ANYTHING in the Giraffe Beds. Ask to help with changing linens, fixing minor things in the bed, and asking to Kangaroo Care as soon as possible. The more interactions you get with your child in this fragile state not only helps your child grow and get to know you but it also helps you keep sane, mentally, emotionally and connectively with your child.

6) Get to know some of the other parents around you. Strength in numbers. Everyone in the NICU has a sick baby, learn what other parents are doing to help their babies grow.

7) If the hospital allows, bring comforting things from home for the baby to know you. Sleep with lovies, blankets, swaddling, bedding. Keep them in ziplock bags until the day they allow you to use it in their Giraffe Beds. Your scent is an extreme comfort to them. Also, if it's family centered care rooms, bring speakers and soft comforting music to play every now and then. No AC/DC yet  Mozart for babies is a GREAT start.

 Do spend some YOU time outside of the hospital, especially if it's family centered care rooms. We lived in the hospital, almost a month before going to see a movie together. The nurses had to kick us out bec. we hardly left the room. It's important for your mental stability to do things for you as well because your baby needs you to be healthy. Your baby is surrounded by the best team that can be taking care of them and they will notify you if you need to be there.

9) Leave a disposable film camera / old digital camera in the room just in case something funny happens while you are out on said date. Our nurses would dress the girls up in cute outfits or pose with the babies when a big accomplishment was made like finishing a whole 2 cc's of milk for the first time. (it's a big deal... i promise.) Those little moments are fun to have.

10) Blog/Journal/Keep a Diary of this journey. (you can read ours at http://iamknittogether.blogspot.com/ - start around 12.13.10 for the hospital journey or 10.28.10 for the whole journey) because it is therapy. We have over a year's worth of writing that we are now turning in to a book to give to our daughters when they get old enough to understand it to show them the amazing miracles that they are. It's also an easy way to keep your family and friends informed about what's going on bec. a lot of them won't be able to see them at this phase of life. Also keep a notepad and pen in the room for when therapists, doctors and specialists stop by and work with your baby while you are out. Have them leave a note, their pager numbers or contact info so you can contact them about anything they might have done.

150 days and counting...

Counting down to the day that little Ms. Penelope can come home.  That day is 5 days away. FIVE!  It's truly hard to believe that the time is around the corner that we will be stepping out of the NICU with our little Penny, prayerfully walking away and not coming back.  Not coming back, as a patient but rather a graduate of this academy that a select graduate from.  I've been on a strange work/writing hiatus since my last post. Seven long weeks on the road, 38 shows, and only three days at home to see your fragmented family equal an emotionally, spiritually, creatively drained individual.  Our silver lining was often the little cameras on front of our electronic windows, carrying me hundreds of miles in to a hospital room or nursery, visually and mentally holding my children and my wife.  Carrying on a conversation with doctors about cals kkals/kgs/day, possible surgery dates and how to help an anemic little baby all while sitting in a coffee shop or back lounge of a bus.  Technology may be the downfall of a lot of folks but for this family, it's what is helping us stay together, keeping us, in a strange sort of way, finger tips apart.

On my notebook, my screen saver spools the images of the past 152 days (the two days prior to their birth in the hospital) and my mind flutters to the moment I, or someone else, snapped those images, the flooding of emotions that come washing in to my brain, seeping it's way out through the windows to my soul.  How far we have come! but yet, how absolutely little we have scratched on the surface to the lives of these little ones.  We have journeyed the path of a thousand lives over the past 150 days, leaning on the shoulders of all those that choose to carry us to the next oasis.  The NICU life is a much like a trek across the desert with the knowledge that there is a great mystery to be discovered.  Many that walk it, come out discovering their mystery leads them to a great ocean, one called the Ocean of Loss, having to send their precious treasure they have been carrying across the great crystal sea.  Others walk and walk, taking them to an ancient chamber that many have journeyed to, that once inside leads them to yet another mysterious quest called "parenting."  We have met many along the way that have taken their little treasures out of the desert in to the next mystery, saying good bye and praying them the best as they enter in to that tough next quest.  We have also met those select few who have seen the Great Ocean and have tasted it's saltiness, wondering why their path brought them there.  They walk away with the bitter taste of that Ocean and pray never to experience it again.  This journey is filled with many that help you navigate through the tough sands, guides that point you to your next steps, craftsmen who specialize in caring for your treasure and most importantly your fellow journeymen who lift you up as you try the best you can to keep that priceless gem out of the blasting winds of the desert, away from the sands that could mark up and buff out the twinkling.

It's hard to believe that we are actually about to walk from this desert in to the next chapter of the mystery.  I do know, it's going to be a fun one!

Every storm brings a rainbow, a symbol that was given to Noah that God chose to use something destructive to bring about a greater good.  A symbol that would be given to us as a sign of hope, that God has given us another day to give Him praise through our lives.  We give Christ praise through our storm.

(Samsung Epic Panorama option. 05.23.11)  

Not my best work, but I needed to remember that moment.

Photo Bomb 3.13

I figure since my range of motion is limited to putting my hands straight out in front of me, and I can't hold my baby, at least I have some time now to post some pictures of my sweet girls to make myself and you all smile.  Silver lining people...it's all about the silver lining!

Mrs Amber visiting her little buddy

 

Penelope playing peep-eye

Penelope's snuggle time with MahMah

Penny the Poser

Uncle Matt getting his baby fix with Lydia

Aunt Sam slaving away while Uncle Matt held Lydia...typical

Aunt Shelli feeding Lydia

Penelope's foot got grounded for kicking at her daddy

Penny was having a talk with her bear in sheep's clothing while her bodyguard Panda Pal watches over her and her Lydi-Lamb whispers in her ear....think she's got enough stuffed animals?

reminding Eliza that she'll always be our favorite "dog"-ter

Mommy and Lydi

Daddy and Lydi

I mean really....how cute is this

there's just too much cuteness

Sweet Penny being coy....pretty girl...still working on her bilirubin

Penny wrapping herself around daddy's finger...it's mutual

And last but not least...Lydia's ballerina outfit. And I said I didn't want lots of pink clothes...who was I kidding?!?!

02.12 Update

The days of the crazy bells, monitors and sounds are slowly crawling to an end.  The unnerving feeling of a situation waiting around a corner still sits with me and I have to shake that feeling off because the truth of the matter is that these girls are growing and going in the right direction.  They are finally losing pieces of equipment bit by bit, mainly Penelope.  One thing gets shut off or taken away bit by bit.  It's been another quiet day here in the NICU and we can't be more grateful.  So quiet that when Bethany went out for a baby shower today, I went home and pressed out on a run, albiet a painful-getting reinitiated kind of run, but nonetheless refreshing to work off some of the late night eating that we have been doing.

Update:
Penelope 1kg 190g  2lbs 9.9oz

The girl's finally playing by the books.  As far as medicines go, she's down to just her vancomycin (antibiotics) and ursodial (bili medicine).  When the last dose of vanc is given Sun. night, she'll be getting rid of that IV which hopefully she'll take to it like she did the removal of the PICC line and grow even stronger.  The PICC really was causing more harm than good in this situation because since it's removal, she's continued her journey upwards.  It's hard for the body, especially such a tiny one, to have a foreign object like that inside of you for so long, as beneficial as it is.  It's the main line that continued to give her nutrients when she was on the ever so slightest of feeds.  Her goal now is to grow and get big which won't be hard at the rate she's being given her food!  She's up to bolus 20cc's of feed over two hours with one hour break, every three hours and that's momma's milk with 25calories in fortifiers!  It's truthfully close to eating a burger, fries and shake every 3 hours - a lot of calories!  The rate at which they grow here is astounding! She's also stooling well with "man poop" diapers with the color finally changing from a darkish yellow to the more brighter yellow that is normal.  She's also been given the opportunity to have a bottle every shift with 5cc's of milk.  Bethany gave her the first one, two days ago and I got to give her one last night and tonight.  It's so fulfilling as a parent to feed your child, especially after not having that opportunity since their birth.  While Bethany was holding her last night, she was rooting around (sticking her tongue out and mouthing around for food) trying to find more food than what she had been given, so Bethany decides that she'll give her a taste of the real deal.  The girl latched on without any help almost immediately!  Such a smart girl!!! The only thing holding her back is her mouth size is too small so Bethany's waiting for the lactation specialist to help her out.  She's moving on up!! Dr. Krishnan believes that she could be homeward bound within a month!  Woot!  Which is about right, with the plan to go home as close to the original completed gestational date as possible (March 15th).  Currently the concerns left on the table are A'sB's (which will be an issue for a number of months even while they're at home), her bili number, her inguinal hernia, the dimpling on her back, and continued digestion health and development.  The hernia and dimpling are things they plan on doing the closer she gets to leaving with the thoughts that these things aren't going to get worse over the next month.  There's even talk about moving her back to The Pavilion if there's nothing left but feed and grow.  This would be a huge help because...

 Lydia 1kg 910g (they gotta be twins) 4lbs 3oz

might be coming home in as little time as ten days!  *shock* yes, it's true that this might be happening very soon and oh man, are we freaked out!  Lydia has been a champ, taking 31cc's of milk with fortifier within her 15 min. time frame the last two feeds.  I fed her tonight and she gobbled it up quick!  She was so mad before I gave it to her, yelling and crying louder than we've ever heard her cry.  She's on an order right now of every other feed still to have either mom or bottle which is tiring her out a bit more but she's getting more and more use to eating by real PO rather than by NG.  I'll have to admit, it's been a lot of fun having her in this stage where we can dress her up, put fun sheets in her bed and have her out of the giraffe bed more.  The nurses say as soon as she can hold her temp properly, she'll be moving to a radiant warmer bed which is an open top bed.  We'll have even more access to her, without the concerns of keeping the humidity inside the bed.  Medicine wise, she's off her caffeine dosage for over a day now, she's on a single 24 hour dose of Previcid for her refluxing - which has helped a TON! and of course getting her polyvisol (multivitamin) by NG.  She's getting so big, in the preemie sense!  It's quite hard to imagine that people don't go home with four pound babies but rather 6-10 pound babies!

And so brings us to the conclusion of today!  What a blessing today has been, being filled with joy with these two lives that God has chosen to bestow upon us.  What a learning process we are continuing to go through.

Specific Prayer Requests

• Penelope to continue tolerating feeds, having poopy diapers.
• Penelope to develop the proper suck, swallow, breath technique.
• Penelope to not have any more infections.
• Penelope to be done with IV's (blood transfusions, medicines).
• Penelope to not have any issues with her hernia and the dimpling on her back.
• Lydia & Penny to continue getting bigger and stronger
• Lydia to keep up with her feeds and SSB technique
• Lydia to get out of her incubator and in to an open air bed.
• For us to be mentally prepared for Lydia to come home as well as getting our house prepared for her arrival!

A continued thank you for you all who are still journeying with us and learning about these little lives along with us.  We're entering the home stretch!

02.08 Update

Whoa!!  Big morning here in the Chuplicate room in the LeBonheur NICU!  

PENNY WAS EXTUBATED THIS MORNING!!!!!

AMAZING!  What an incredible feeling to be able to see your child's face without this crazy tube contraption sticking out of her mouth.  Here... why don't I just show you!

Yah... she's freaking out in this picture but who wouldn't be freaking out if the tube that had been down your throat for a month finally came out.  Her poor little raspy cry is warming, heart breaking and empowering all in the same.  She'll be on high flow binasal canula for a while, around 3L and 30-21%(room air) O2.  She's fighting stronger than ever now that she doesn't have her intubation tube and with her PICC being out due to an infection of the line, we can tell it's all making a difference.  The PICC grew gram positive cocci staph epi. which is different than what she had before.  She still needs her PICC so she will be getting it back in about a weeks time once she's done with her antibiotics (vancomycin.)  She's still getting ursodial for her conjugated bili number, which is decreasing nicely.  She's still, as from the pic above, a nice dull yellowish tint which Dr. Krishnan says will go away once her bili numbers get out of the teens and bellow 5.  Her feeds were increased just a bit and are still continuous which hopefully she will begin to get switched to more "bolus" feeds.

And of course, is the NICU life, some ups must come with some downs.  Last night, the nurse saw an inguinal hernia starting to develop in the upper area of Penny's left groin area.  This is a common thing that occurs with preemies and might go away on it's own or if it stays the same size, can be repaired with surgery later on before discharge.  If it gets worse, she'll have to go for the surgery sooner to help correct it.  Also, we noticed this morning what appeared to be a dimpling or a fold of skin that looked suspicious, low on her back right above her tailbone.  The doc said that this might be an indicator for tethered cord (don't look it up... there are LOTS of variables for this and i don't even know how to explain a part of it yet.) and will be further inspected on tomorrow by a spinal ultrasound.  The doctor was sure it wasn't serious because the amount of movement she has in her lower limbs is quite active.  So yet again our we rely on our Faithful Creator to continue knitting our baby together, whether naturally or by the bestowing of knowledge to those that medically knit.

One last cool thing about tonight!  I got to kangaroo Penny for the first time!!!  The same overwhelming response that i had the night I held Lydia, I had tonight with Penelope.  It's an amazing feeling holding such a small human being in your arms, it truthfully is one of those things that will never happen again in life (or at least plan to happen.) There's an incredible bonding that occurs, with all parents of course, when you hold your child to your chest and feel their body against yours.  It's such a strong connection that melts your heart and you can almost feel melded together.  I get the baby "high" after I hold the girls, it's definitely something I'll never ever get used to and never ever want to get enough of.  So awesome!

Our Lydia, she's continuing down her journey of being a "plain jane" preemie.  She's battling reflux, currently, which is a very common preemie thing to deal with but to help with some of the pain she is getting some good ole heart burn meds, prevacid.  She's been ordered to take PO feeds every other feed which is a huge deal for the little girl!  She's never had to work so hard for food before!  Well, we're not working her that hard since she gets whatever she doesn't finish afterwards by tube.  She's been faithfully taking about 6cc's by bottle and about that much from mom, naturally.  She's learning the key principle suck, swallow, breath much better and best when she's breast feeding.  I've been giving her bottle feeds once a shift so it's nice to be able to get some baby bonding time that way.  She's being a champ eater and a champ pooper!  She has this honed sense of timing that whenever I'm holding her, she knows she's comfortable enough just to give me a big ole stinky poo.  Grateful.  Seriously, I am.  Thankful for a little girl that's alive and well that will poop on me.  Love it!

Specific Prayer Requests:

• Penny's lungs to continue getting stronger especially now that she's on hi flow canula
• Penny's hernia to either go away on it's own or to stay small and get fixed later.
• Penny's "dimpling" or "tethered cord" whatever it might be, and for it to be not an issue or something easily fixed.
• Penny & Lydia to continue tolerating their feeds and their little stomachs to handle it properly so that they don't have to battle with NEC.
• Lydia to continue figuring out suck, swallow, breath
• Lydia to not have any issues due to her reflux.
• For all the doctors, nurses and specialists that come to see the kiddos, that we may present to them a character of Christ and a posture of love and respect for what they do.
• For our continued sanity as we begin the process of preparing our home to receive these little ones and prepare our minds to have children not in the hospital!
• For us to continually be grateful for the prayers, blessings, food, gifts, and time that people have invested in these little lives and us.

And now... for something completely different.

"Oh yea...check me out"

Give her a minute, Little Miss Flower, she'll blow that smile right off your face

Sweet innocent Penny

Penny attempting to take matters into her own hands with this whole extubation debate

Lydia's First Outfit

Lydia's Bath

Tour of Our NICU World

02.01 Evening Update (sorry it's late...)

Yesterday ended up being a rough day more so at the end than at the beginning.  

Penelope 1160grams (2lbs 8.91oz)       Lydia - 1510grams (3lbs 5.26oz)

Yesterday was a Penelope day.  She wanted everyone to be around her, helping her out.  She has been nicknamed the "drama queen" because of her big swings with her vitals.  Whenever she begins to alarm, either high or low, we get to the alarm and it stops right before we hit the button.  Also when she has a fit, she'll throw the biggest one she can.  For example, she hasn't had a big brady in a while but just an hour ago she had a real big bradycardia (not a good thing), turned a horrible shade of blue and scared the living daylights out of us.  But as soon as she came back, she was wide awake, looking around, in our minds saying "so...what's going on guys?" That type of drama queen.  So, we know already that we've got ourselves a handful of crazy coming when they get older.  Of other stressful things yesterday, Penny alarmed almost all day and I mean almost all day.  If it wasn't too high, it was too low or she'd be clamping down on her vent tube or at the same time her infusion would be done or IV fluid making noise.  It was a very ruckus type of day in the alarm world.  

Penny started on her steroids yesterday to help combat her BPD (bronchial pulmonary displasia), another name for chronic lung disease and it will run.  The Lasix was stopped today and replaced by another diuretic called Aldactazide because the Lasix has the potential to pull calcium out of her bones which she needs desperately right now!  She's still being given some sedatives to help calm her and not let her burn too many calories or extubate herself.  So far her second day with the steroids has been much calmer.  Her overal neediness has been much lower and her fighting fits have been better.  She did have to have a dose of Fentynal & Ativan tonight to help her out of one of her unexplained super, albeit sadly quiet, fits where she just scrunched her forehead and held her mouth wide open for a long time.  Bethany sat with her, trying to comfort her but to no avail which is when the nurse decided it was time to help her calm down.  She has been tolerating 2cc continuous feeds and pooping it back well.  She's still getting her TPN & lipids to help supplement her while she's still going through this phase.  

Lydia continues to grow like a weed.  It's really one of the hardest things about this situation.  One well daughter and one not so well daughter, literally with a turn of the head.  Lydia is taking 30 min. bolus feeds of 31cc's fortified milk.  Today, though, she started bottle feeding!  At 2pm Bethany fed her her first bottle and she took 6cc's of her 31 like a champ!  Still learning the suck, swallow, breath concept, she did have a few forgetful moments where she got "greedy" and continued to swallow without breathing, causing a few desats that were easily remedied by the ole bottle removal and gentle nudges to take some breathes.  She continues to make nice smelly diapers with her largest output yet being a 50cc diaper!  (that's HUGE and i was the lucky one to get it!)  I did get to feed her the evening bottle and she did about the same with even fewer desats!  That's a fast learner!  The nurses are proud and impressed with her capabilities!  She's also starting to get, by PO, her poly-vi-sol (a really smelly liquid multi vitamin) since she doesn't have a TPN bag anymore.  Her goals are just to sleep, eat grow! 

Specific prayer requests:

• Penny to handle the steroids well (no brain bleeds or brain damage - only long term will tell).
• Penny to continue to ween off the vent.
• Penny & Lydia to continue tolerating feeds with no NEC issues.
• Lydia to continue learning the suck, swallow, breath technique.
• For Bethany & I to continue taking these days in a gracious stride.
• For all of you to be immensely blessed by your continued, faithful prayers and follow-ups with us!  Thank you! 

On other, non baby news, we had a tweetup (slang for when people who use the social media format called Twitter, get together) with the cool PR people Amanda & Melissa yesterday.  For those that don't follow the crazy world of social media, Twitter is a short form, "micro-blogging" tool.  Through my tweeting about it, Amanda (@lebonheurchild) started to keep up with what was going on here in the NICU and wanted to stop byto put Twitter name with family.  We had met Melissa previously when the girls first got here together so it was nice to get to meet up with other folks that help get the LeBonheur name out and about, who tell the stories of families that are helped by LeBonheur.  If you're on Facebook, you can "Like" them here. Amanda also brought us these cool heart luggage tags that are currently room accessories until the girls have their own rolling bags.  Thank you Amanda & Melissa!

                           

We love you all!

The Chus

1.26 Uber Massive Photo Bomb! Kablam! (56k warning)

Yeah that's right... i used 56k warning 

Click on images to make larger

(pictures from 01.19-01.22)

Little Penny

 Lifting my crazy heavy daughter

 Holding Lydia after Bethany washed her for our first time.

No, I'm not happy about holding my baby.

The hoss of the two and still so tiny.

We know it's just gas but she makes some pretty awesome faces!

Dimples!

 Hair bow day!

Picture time with Penelope. Awake and looking at mom.

 Our tiny baby.

First day to Kangaroo without her PICC line!!  One step closer to wires free!

She's our escape artist... sneaking her way to the end of the isolette.

No paparazzi! 

Dear Jesus, may I have awesome hair, finger nails and for this stinkin machine to shove off.

First time for me to kangaroo Lydia!!  Overwhelmed by emotions right here.

Trying not to cry and smile.

Relishing in the newfound feeling of actually being a parent.

Close to being done and not wanting to let go.

My last ten minutes ended with a nap of course!