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.

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

1.26 Afternoon Update

(by Bethany from http://iamknittogether.blogspot.com)

Well it's another "step back" day. Maybe we'll get another "step forward" one soon.

Penny's chest x-ray shows still more fluid on her lungs, so they're having to not go down on her oscillator settings but go up.  They're also having to give her another round (her 3rd) of diuretics (Lasix) to help clear it out.  This is disappointing, but the doctor said he was kind of rushing her before and she's letting him know that she's not ready yet.  When her body is ready she will let us know.   We just have to be patient.  The good news is her second set of cultures still hasn't grown anything from the PICC line so it doesn't have to be removed.  That's an answered prayer.  She is going to have her 5th blood transfusion today because her hematocrit was low.  They are going up on her feeds though so that's another good thing.

Lydia was having more and more desats so last night she was put back on the oxygen canula.  Dr Ravi said to take it off of her this morning because it's really having no positive effect on her number of desats.  I'm in favor of taking it off..and so is she.  She keeps trying to pull at it. It totally doesn't go with her outfit.  She is also getting a blood transfusion today (her 1st as far as I can remember) because her hematocrit was 19, which is super low.  She's been making some of her own blood but not enough.  Other than that she's doing ok and they are increasing her feeds too.  We're hoping to get to work with the speech therapist today on getting her to bottle/breast feed. We're just waiting on the order to go in and to get scheduled with speech.

You guys have been so sweet to ask so often what you can do to help, and we've finally found something you can do!  We've been asked to get our friends and family to donate blood to LifeBlood on behalf of Penelope and Lydia to replace the blood they are getting. LIfeBlood is such an amazing organization that has provided just what our daughters needed when they needed it.  They can only do that if they have people to donate.  So if you have a spare minute and want to go by LifeBlood, just let them know that you're donating on behalf of Lydia or Penelope (not direct donating) and you'll be doing us, LifeBlood, and a patient in need of blood somewhere in Memphis a great favor.

OK...Specific Prayer:

• Penny's  progress towards getting off the oscillator
• Penny and Lydia's digestive systems to work properly with increased feeds (protection from NEC)
• Lydia's desats to decrease 
• Our discouragement 
• the Doyles as they have visitation this evening and the funeral tomorrow

The Chus

01.20 Evening update

With some rough days behind us, we had a semi normal day today.  It's been a rough road, feeling like a week had passed but really only two days.  That was an intimidating realization knowing the extent of this ride.  But to hear that Penelope's numbers were good this morning, was a huge relief.  Tonight's update is going to be short but sweet because truthfully, i'm mentally exhausted.

Lydia - 1370grams (2lbs 13oz)

• Her numbers have been good and have been holding steady but she has been having quite a number of apnea sessions which in turn lead to brady's. So they don't want that anymore!  They're giving her dose of caffeine in two sessions now instead of one.
• Her feedings have switched from continuous back to bolus pushes over an hour and then off three hours to help her get adjusted to regular feedings.
• She's still stubborn in the waste management area but we're hoping she gets her workers to go off strike.
• Her renal ultrasound showed that her kidney's were working just fine and that there weren't any issues.  The concern was present due to the presence of her ear tag (an extra growth of skin around the ear) which, we were told later that the ear develops as the same time as kidneys so if there's a visible variant then there might be an issue inside.

Penelope - 1030? (2lbs 4oz) in question bec. of fluid build up

• Our poor Penny has had a rough few days.  Her hematocrit numbers were down so she got her 4th transfusion.
• Her CO2 levels have been bad but today it leveled out.  Her last gas was a bit high but it was taken after she had been suctioned which can cause her to get upset which in turn raises her CO2.
• Her pH has leveled out to 7.2 meaning that she's just slightly acidotic but better than where she has been.  No new medicine is being given for that.
• Her fluid output has been good so they stopped her dopamine drip.  She'll have to work the rest of her swelling out on her own.
• Her last x-ray showed that her pulmonary edema has either gotten to a level that the x-ray can't see or it's finally gone!  Yay!
• Her head ultrasound showed no bleeding.  They were worried that there might be something going on because her crit number was down.  Bleeding in the head is a bad thing and they try and make sure that when there's a sudden low crit number that it's not caused by a bleed somewhere.
• Her echo showed that her heart was looking great and was confirmed by our cardiologist, Dr. Becker after she heard that she was having some struggles.  It was really kind of her to come up and give us a bit of hope that nothing was going on because of her heart.
• She's still trying to be weaned off the oscillator but she's still not coming off of it as fast as they'd like.  
• Her infection was confirmed to be MSSA (Methicillin-Sensitive Staphylococcus Aureus basically means that it is antibiotic sensitive) but she has another infection going on that is gram negative rods which they haven't identified yet.  The antibiotics that she is being given are the two strongest and usually kill any gram positive or negative bugs.  Because of this, it can explain a lot of the other things that are going on because her body is bunkering down while fighting the infections.  Her lethargic nature, sensitivity to sounds and touch, her chemistry all can go back to the infection.  

And so these are our prayer requests tonight!

We have so many things outside of these downs that are praises, God providing a place where amazing care is given through the nurses, practitioners, doctors, specialists, therapists, pharmacists, social workers, clergy, consultants, and alumni of this hospital.  The support from our friends, family, church family, coworkers and those we don't know that read our story help keep us afloat through this emotional hurricane.  We wouldn't be able to continue this story in a sane manner without all of you who are journeying with us.  Thank you.

And... of course, some pictures.

A nurse friend, CJ, made the girls little bows today to put on.

Penny's bow.

Lydia's bow

01.02.11 Evening Update

Bethany and I had been missing our church family so we decided to go and be a part of church this morning. It was wonderful to be together with our family, worshiping together! It was tough to be there and not with our girls so we did take off pretty quick after church was over to get to lunch with our blood family and then to Lydia first at The Pavilion.


Update

After Penny's crazy episode of high blood glucose levels on New Year's Eve, she spent the day yesterday recouping and getting rebalanced. Her numbers continued to stay around the mid 200's and finally hit the low 200's and dipped under that by the evening. We saw Dr. Ferry, the endocrinologist, on New Year's Day and after his examination he said that she had a rare case of congenital diabetes, which might be transient, that they would have to watch and play the balancing game of insulin/glucose to help her out. What caused the massive spike is still unknown, guesses thrown towards her body being under stress, under developed and not being able to keep up insulin-wise with the sugar coming in to her body. We also saw Dr. Chin, another cardiologist, that said that the general consensus for her coarct is that they aren't seeing the necessary signs to say that it really is a coarct. (amazing!) but they will continue to watch and see how her PDA closes before they make final prognosis on that.

This afternoon the doctor called and said that they would be starting Penny on her subcutaneous (subcu) insulin shot (detemir) to get her off of the IV insulin. A few hours ago, I called to check on Penny's stats and they said that her glucose levels were low, so low that the meter was now saying "too low" and so the lab work began again to see what her numbers were. She got to a low of 21 so they cut off all of her fluids and started to give her glucose again. (go figure!) The numbers game has been and is currently being played out as she gets different levels of glucose or dextrose IV's to balance out her subcu insulin shot. She's back up to about 241 on glucose levels. Tomorrow the gamut of doctors come in again to talk about her situation and see what they can do to get her numbers stabilized. This yo yo game is wearing on all of us and we're definitely ready for her to get stable.

As for Lydia, the past few days, she's been a stinkin little clock. Ticking away, movin those little arms around and around, steady as can be. Her food intake continues to increase (which makes for some good meconium diapers) and her weight gain continues to tip the scales, as much as a preemie can rock a scale. Our continued concerns are for her PDA to close and for there to be no complications within her gut, (NEC) esp. if she were to take on another course of indocin.

And so this is where we stand tonight. Thank you all for your prayers, comments and for your continued journeying with us down this path!

Goodnight from Le Bonheur NICU - The Chus

Christmas in NICU

It's not quite so snowy inside NICU this morning or sticking on the streets of Memphis, for that matter. But the twinkling lights and warm coziness is definitely here. When we came in this morning to visit the girls we noticed little pink stockings in their beds with pictures of them with reindeer caps on. They also got some presents, as well, little pink striped hats and two ornaments for our little tree that we have in the room. So cute!

So for this morning has been an eventful one but let me catch us up to speed.

Premature babies have quite a number of hurdles to jump over. We have and will continue to jump hurdles which is what we've come to expect from information given to us by friends and family that have experience in this world.

Current hurdles:

1) Hyaline Membrane Disease (aka Infant Respiratory Distress Syndrome)
2) Both girls have an open PDA (patent ductus arteriosus). Lydia's is more normal and is being closed off by medicine which comes with risks, one of which is necrotizing enterocolitis the most serious so she will be watched closely. Penny will not be geting the treatment yet because she needs to be watched. Her case is a bit different because her PDA is connected to her aorta in a way that could possibly be helping her but they aren't sure yet. That all leads to another hurdle which we'll worry about when it gets time (for look up aortic coarctation).
3) Blood Gas levels are an unending balancing act for the babies and the nurses. They tell the nurse a lot of information on how the baby's blood is handling certain things like oxygen and carbon dioxide among other important gases. We want levels to continue to stay around the same numbers but like I said... it's a balancing act and some times they tip a little to one side or the other.
4) Penny had an atelectasis of the left lung which required her to be intubated and put on a vent. This was something we thought would have happened when she first was born but because she was crying so much when she first came out the doctors thought they would give her a chance to do things on her own. She did good for a two nights but the atelectasis came on quick and they thought it best to give her a chance to rest so they vented her.
*update to this 12.26.10 - Penny was just extubated and her blood gas numbers continue to look good. She was breathing so well on her own they saw it fit to pull her tube!! yay for one step forward!

For some hurdles for us parents. We've been trying our best to get rest and to figure out this whole new schedule for our lives. Keeping weird hours because of pumping and going to the hospital, going to and from the NICU, trying to keep ourselves out of the ways of the doctors and nurses but not so out of the way that we miss an opportunity to connect with our daughters, and eat! We've been feeling the emotional turmoil every night after leaving our girls at the hospital. We cry at random times while doing random things, imagine hearing the noises of their machines in our house and pretend to her them crying through the videos on our computer. We know that we are blessed to have them in our lives right now and to be sharing this time with them, so we do all we can to bond with them.

Every day we have family members coming to see the babies and us so it's been tough sitting down and writing an update. We will try our absolute best to continue updating on a very regular basis but like this post (written half on the 25th and finishing on the 26th) sometimes things get a little hectic, so please forgive us if we can't get the updates out as fast as we or you would like! I will continue to post pictures as we go along and sometimes they might just be pics without updates but know that we appreciate you all for your following us on this journey of two little girls who have already faced the odds just by being born. We'll continue to see how God intervenes and continue trusting that His ways are higher than any of mine.