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.

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

The Bearers of Water

If you've ever been crazy enough to challenge your body and use it to run/bike/swim obscene amounts of miles then you will understand what I'm about to talk about.  If not, then find someone to hold a cup of water half way between a point A and a point B where you think it's too far and you'll understand this analogy.  I've run a number of 5k's and scarily enough, dream of running a marathon.  Yes, there's something absurd about making your body carry itself over endless moments of concrete and asphalt but yet within the absurdity lies a great urge to feel the rush of adrenaline pushing you over a finish line.  It's euphoric, and no, it's not the lack of oxygen flowing to your head because you've just run 26.2 miles, it's the high that you've trained yourself, disciplined your body to propel you through unnerving hours of muscle clenching, joint straining, and feet burning repetition.  But during the race, that fortress of solitude known as your head, begins to play tricks on you as you pound the pavement.  You see, a marathon is a mind game because if you've trained your body and have prepared it for what it's about to do, it will do it.  But your mind, those electrical signals firing through neurons in your brain, will tell you differently because it's truly in there where the race is happening.

You start the race enthralled by the sound, the electricity in the air, your pulse gliding through the weighted waters of nerves.  Your heart, leashed by the cage of your body, tries to escape through your ears. You hear the countdown, the hubbub around you lets you know that the moment draws near to let loose the mustangs that you've had fenced in and BANG! the gate breaks open and they begin to pound the ground in desperation.  You hear the cheers all around you, the crowds screaming for all to run well, to race with the best you have.  The noise is deafening and the sound of feet stomping on the asphalt is one of metronome-esk rhythm but as you get further away from the start, the rhythm begins to thin to sound like rain starting to fall on a roof and then, it's just you.  Your heart beating in your ears and your feet pushing off the street is all that sings to you.  The music of the race.  It's in this early part of the race that your mind starts throwing the mental hurdles at you.  "What am I doing? Why in the world did i decide to do this?! I've only gone 5 miles??  Great!??!"  It's during this time that you look around to see who's pacing with you, or rather, who you can pace with.

For the most part, you're alone and keeping yourself company as you discuss the reasons why you are currently doing what you are doing.  You begin to doubt the possibility that you will ever make it to the end and around the time that you want to sit down on the side of the road and give in to what you think is exhaustion, you see kind people standing ahead with cups of water and cheering words of perseverance.  As you run pass, they pass you a cup and you automatically feel a new energy.  You haven't even had a sip yet but transference of the coolness into your hand gives you jolt and you know what it is about to do for you as you slowly let the water trickle down your throat and on your face.

This is exactly where we are in this journey with our babies.  NICU life is a marathon and we're currently at our questioning phase of the journey.  A month in and the feelings of desperation, frustration, some hopelessness are starting to set in.  "Are we really going to be here another month to two months? Is our baby really going to make it out ok? Do the doctors and nurses know what they are doing?  We have two babies...?" But thanks to so many of our family and friends who constantly are pouring their wisdom and knowledge in to our lives, we grab a cup of water and we continue to press on, even with our doubts pushing the tears on to our faces.  Even though many are around us cheering and encouraging us, the mental solitary mind games that we must face are what ultimately we will have to battle through all of this.  We stand and run this race, not for our girls because our perseverance really won't do anything for them, but for Christ to be magnified through the journey.  For the outcome of this marathon isn't whether our babies are here with us or not, it's whether or not the Creator of these lives was glorified through the trial.  The enjoyment of the lives we have is merely His blessing to us.


"And this city shall be to me a name of joy, a praise and a glory before all the nations of the earth who shall hear of all the good that I do for them. They shall fear and tremble because of all the good and all the prosperity I provide for it."
(Jeremiah 33:9 ESV)

May we be a city on a hill that proclaims the name of Jesus through our doubts and our fears.  No man knows the future but we know our response with whatever the future may hold.  May the names of our girls not laude the name of a doctor or nurse or a hospital but rather may they bring a shout of praise and glory to a God that has delivered them.  For He has provided for us in more ways than we can count and we tremble at His goodness.  We know of the good He provides and we sing of His glory. He is the Bearer of our Salvation and the Light of our winding path.

Soli Deo Gloria.

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.

Doctor, Doctor Gimme The News

It's so cold in here... brrrr...

What a strange and emotional day yesterday ended up being. We were planning on a normal and uneventful day of going in for the ultrasound and seeing the babies, dashing around town to get final Christmas things done and prepare for our week in the hospital. Guess ole Robert Burns said it best...

We arrived at Dr. Schneider's office and went back for our ultrasound. Most of the exam went fairly normal but once the sonographer started to look at Penelope's heart and do measurements of the heart wall, the concerns started to come out. After we were done we went to the consult room to wait to hear what the doctor had to say about the situation. Dr. Schneider was actually out of town so we would be seeing another doctor that day. After the doctor came in she began to tell us that the signs of stress, thickening of the heart wall and fluid build up around Penny's heart, that would present themselves at the start of the third trimester had now shown themselves and it was time to go to the hospital. We were a bit taken aback bec. she didn't want to contact Dr. Schneider since he was on vacation but we said ok and dashed home to whirlwind pack a few things and have a few last moments as just the two of us in the house. Bethany's mom was with us, helping us stay a bit We took a few quick pics of us outside of the house since we don't have many of Bethany pregnant and I together so we needed to have at least that one on the way to the hospital!

We got to the hospital, checked in, and then shown to our room where the kind nurse started the process of getting us filed up and Bethany situated to be in the bed for a bit. She got these cool disk heart monitors that show the heart rates of the girls and sends the info to the nurse workstations so they can track them throughout the day and night. They're pesky little buggers and the nurse had to keep coming in to hunt them down when they decide to roll around and change positions. The reason for the heart monitors is because of Penny having the fluid around her heart. If the monitors started to show stress and tachycardia in Penny's heart rhythms or they start to plummet, that would be indicators that we needed to be sent straight to the OR to get them out. Throughout the afternoon and in to the evening, Penny only had one serious moment where her heart rate was sky high and the nurse was about to call the doctor. Thankfully Bethany remembered quickly that when we played our Mozart iPod for the girls they would settle down and so I grabbed my headphones and iPod, quickly started up an album and within a few min. both of the girl's heart rate were nice and calm. The nurse was stunned! She'd never seen anything like that before and was super impressed. So Mozart, for the win!! We'll be playing it as often as we can while we're in the NICU to help keep their little minds active and calm. It was hard for Bethany last night bec. the nurse had to keep coming in and waking her up to reconfigure the placements of the straps and the discs but got a few hours of sleep.

We were blessed yesterday afternoon and evening to have some family and a few friends over in the room. It was a nice distraction of the things that were going on around us and helpful in some cases because we began networking, learning about friends that were in the NICU that were nurses who could possibly help work our case. Today continued the steady stream of family members and a couple of friends helping make the day pass by a bit easier. It was nice to have them all here praying for us, encouraging us easing the nerves that we were starting to gather about the things we'll be facing tomorrow. Sister pedicures, mother's going out to get Chikfila nugget platters, best friend, preemie speech pathologist, out of town pregnant friend, happy aunts, engaged cousin, awesome NICU nurse who gave us amazing information for tomorrow, our resident OB friend and awesome molasses cookie making wife, are some of the folks that came by but the most encouraging thing today, though, was a visit from Pastor Larry, who came dashing in to the room to see how Bethany was after just arriving back in town. His praying for us tonight moved us all to tears and we're so grateful for his shepherding, loving heart.

I picked up momentum in writing but I really need to sleep so I'll just blast through the last of important information that you really are wanting.

Bethany received her last round of steroid shots this afternoon and about forty-five min. ago she started her Magnesium Sulfate(aka magwash) IV drip. The magwash caused her to get even more flushed and hot than where she was before. She's been consistently warm the last few weeks of the pregnancy and even more so since we've been in the hospital. It's made for some super chilly nights here and I had Bethany's mom bring my REI sleeping bag for some cozy sleep relief. Penny's heart rate has looked very steady all day today and Lydia has been a tumbler, rolling around all over the place making the nurses chase her down. We're praying that the heart rates continue to stay the same through tomorrow morning and in to the C section time. We're scheduled for a 4pm section.

Last few important notes.

1) I will be able to visit the babies about 1-2 hours after the section. I'll take as many pics as I can during that time and will be uploading them/showing them at the hospital. So stay posted here for the latest pics.

2) We're going to request that tomorrow and Thur. be limited to immediate family and clergy ONLY. We don't know exactly how many passes we will be given and are reserving the first few for our parents. We will let you know ASAP when we/they will be able to have visitors.

3) Because it is RSV season, no children under 12yrs old and anyone with ANY signs of a cold will be allowed to visit them. Thank you for understanding this!! The girls will be in a very special state of care during this time and we're going to do our best to keep them healthy and safe while they catch up to where they need to be in their growth.

We're so excited to finally be meeting these little gals face to face tomorrow. Your prayers and your thoughts at 4pm CDT will mean the world to us!!

Till then...

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