Memories Unstoppable

I have a slideshow that plays in my head.
It's personal,
Intense,
Drives sadness,
Incites triumph,
But mostly, it's just mine.
I suppose that this is probably normal.
I hope it is, at least.
That trauma survivors replay events.
And I assume that it is normal for it to intensify as anniversaries approach.

Anniversaries are approaching.
And I feel in some ways like I am on a train.
The course is chosen,
The tickets bought.
I can't get off,
Even if I feel we are going too fast,
Or not fast enough.
The control of this journey is not mine.
I know I'm going to pass every stop,
See every sight,
And eventually get to some destination.
I hope that destination is fulfilling and peaceful.

Don't get me wrong.
I am grateful.
Tremendously so.
I had some terrifying months.
Yet those months also brought great joy.
And I know that I am blessed.
That a few months are but a blip on the radar for the lifetime I get to spend with my daughter.

But still,
The train goes on,
Passes through many emotions.
Often unexpected,
Unstoppable.

This week last year we had a significant snowstorm.
I also turned 36.
And though we were stuck in the house for a week,
I remember it as a magical time.
I had just learned my baby was to be my first daughter.
Ephram and Charlie were so excited about the snow.
I felt that all was perfect.
I was secure in my marriage, my health and my family.
I was safe.
I also remember that it was at my appointment a week later that it all started to change.

Tonight as I rocked Macie to sleep,
I watched the snow fall outside.
And again the pictures cascaded in my head.
Memories so dear,
Intense,
Mine.

One year past... this is where it starts.
The stream of anniversaries will soon hit.
First appointment that resulted in modified bed rest.
First hospital stint with a husband half a world away.
Restrictive bed rest while caring for an autistic son and a toddler.
Warning of hospitalization.
The hospitalization itself
The day I got the headache to end all headaches.
The day that ended with a beautiful girl.
The heartbreak in learning of her double collapsed lungs,
The pain of seeing my baby suffering.
The triumph of her speedy turnaround.
The day that she started to eat.
The day that she was tube- and wire-free.
Her homecoming.
Watching the bond develop with her brothers.
The night we had to call 911.
The day that she first completed a feeding without any supplements.
The day she finally hit the growth charts.

I hope I can live through these months remembering all that I have,
And not dwelling on all that could have been.

So, my apologies if I wax nostalgic too much in the next few months,
If I seem teary,
Or if I talk too much about something that doesn't seem as huge to everyone else as it is to me.
This is a glimpse of the pictures that play in my head.
They fly by when I'm falling asleep,
Getting ready for the day,
Watching my sleeping daughter,
Or just at a random moment of no extraordinary consequence.
This, the unstoppable stream.

 

Fierce

And now, a break from our regular programming.

I was moved to tears tonight, and had to post this in order to document and remember it.

I have spent most of the night reviewing pictures from 2012 for an end of the year project, and it amazes me to look at the progress that each of my children have made this year. It has been a significant year for all three of them. I was especially moved by this picture of my tiny daughter in my arms, just shy of two weeks old. She has come so far in several months time and was so perfect even then, despite her fragility. We were in such a different reality at the moment captured here... but the entire year with her, whether scary or normalized, has been a blessed one. I feel so privileged to have experienced this miracle with her.

"Though she be but little, she is fierce." Shakespeare

Macie's Newborn Photo Session

The hospital still contracts with a company that provides a newborn photo session to interested parents before discharge.  I loved the pictures we got of Ephram and intended to do the same with Macie.  Once we knew she was early and would be in the NICU, I wasn't sure if we would get the same opportunity.  But the day of her discharge, they came in to ask if we were interested.  I jumped at the opportunity.  Here are my most favorite pictures from the session...  yes, there were some of me.  However, I looked horrible that day.  I was still suffering from effects of pre-eclampsia, high blood pressure and anemia - not to mention lack of sleep from preparing our house the night before.  So please forgive me for not including those!  I love the pictures of my little girl, just shy of the one month mark.

Macie at One Month

Macie turned one month old on April 29th, just five days after her release from the hospital.  We were just starting to get into a rhythm at home, and it was really like we had just brought home a newborn.  It will be very interesting to see Macie's progress during her first year.  Because she was born two months early, she will  likely meet many milestones about two months past normal expectation for her chronological age.  However, she may do some things early.  Because of this, we now deal in both chronological and adjusted ages for Macie.

On April 29th, Macie's chronological age was one month.  Her adjusted age was 37 weeks of gestation, or what I am calling negative three weeks old.

Stats:
The stats that we were given compared Macie to other one month olds that were born full term.  Obviously, she was on the low end of all scales.

Height: 18.75 inches, 1%
Weight: 5 lbs 10.5 oz, not on the scale for percentages
Head Circumference: 34 cm, 2%

Compared to other one month old babies born at 33 weeks her percentages were:
Height: 24%
Weight: 5%
Head Circumference: 33%

Her weight, although a low percentage compared to height, is not of great concern.  Macie has steadily put on weight since birth and is continuing to climb.  Although she exclusively drinks breastmilk, it is fortified with a formula called Neosure that adds 2 extra calories per ounce.

Milestones:
Macie had many achievements of interest during her first month, most of which are documented in the NICU updates that I did.  Here are a couple of other things to note:

• Rolled from front to side - 4 weeks
• Lift head at 45 degree angle - 4 weeks
• Turn head from side to side on tummy - 3 weeks

At one month Macie is wearing newborn diapers and preemie clothes.

Feeding:

Macie is eating expressed breastmilk fortified with neosure formula.  While her "on demand" feeding schedule had her eating about 70ml every 4 hours, we had to change her schedule because of severe reflux.  At one month, Macie is eating about 50-55ml every 3 hours. 

We also "practice" traditional nursing one to two times daily.  Macie is still working on maintaining her latch and staying awake long enough to get a good amount of milk.

Macie's reflux was severe enough that she was in a lot of pain throughout the day and night.  At the end of the month she was put on Zantac to help address this issue.

Sleeping:

At one month, Macie is still several weeks early, so her sleep patterns mimic that of a baby in the womb.  She wakes briefly to eat, and has some brief alert periods that typically last under 30 minutes.  Other than that she sleeps and sleeps and sleeps.

At night Macie sleeps for four hour stretches and feeds twice during normal "sleeping" hours.  She sleeps in a co-sleeper next to our bed.  We double swaddle her and use an over-blanket for warmth.  Her mattress is at an incline to help with the reflux.

Favorite Songs:

If Macie is upset, she will always calm down within a few seconds of when I start singing.  The songs that work the best are Twinkle, Twinkle Little Star and Baa Baa Black Sheep.  She also likes the ABC song - so I think that is just her favorite tune!

Favorite Activities:

• Sleeping
• Tummy time
• Being held by mommy or daddy

Least Favorite Activities:

• Diaper changes
• Taking vitamins
• Spitting up

Here are some pictures from the end of her first month!  

Macie in the NICU: The Final Week

Macie is home now and is doing well!  She had her first appointment with her pediatrician yesterday.  She had gained 3 ounces since leaving the hospital, which is right on track for what her doctors wanted… a weight gain of 1 to 1.5 ounces each day.  They gave us her stats compared to other one month old babies.  Of course, she was way low on the percentages… her adjusted age, which takes her prematurity into consideration, is to be born in two and a half weeks.  Considering that, she's doing fine.  But compared to other one month olds, she is in the first percentile for height, the second percentile for head circumference and not even on the charts for weight.

Here is an account of her last week in the NICU.

Day 23

When Andy and I arrived at the NICU on April 20th, we scrubbed in and walked down the hall, around the corner, and down the next long hall to the next-to-last room which was where Macie was stationed.  Just as we were entering into her room, a nurse stopped us and told us that she had been moved.  I wasn't happy that they moved my daughter without informing us.  It wasn't a great way to start our visit that day.  They were supposed to call and tell us, and had even written a note that it had been done, but it hadn't.  The nurse who was supposed to call us came and apologized.  One of the hardest things about having a baby in the NICU is that you don't really control anything.  In many ways it feels like your baby belongs to the hospital staff instead of to you.  Having her moved without asking or even informing us just drove that point home to me, which is probably why it made me upset.  However, I believe that this is the only thing that happened the entire time we were in the NICU that wasn't positive.  Overall, the staff there was amazing and our experience was such that I will tell everyone I know to go have their babies at Evergreen, just in case something happens.

Macie had been moved to room 4108.  She went from being at the very end of the NICU to the very front of Pediatrics.  Her new room was right next to the scrub sink.  And yes, she wasn't in the official "NICU" section anymore.  So the reason for her move was very positive.  They had moved her out of the critical section and into pediatrics, which is where they put babies that are close to going home.  All of the nurses in Pediatrics are Level 2 nurses as well and trained to care for preemies, and the neonatologists make rounds in the NICU wing every day.  Once I realized the reason for her move, I was almost able to forget that they'd moved her without notifying us, because it meant that they saw her as completely out of the woods.  With Macie now in Peds, we were given even more freedom when we were there to care for her independently.  She still had to stay hooked up to the monitors, but we no longer had to ask for permission to hold her, move her, change her diapers, etc.

That day Macie took four feedings in a row by nipple.  Every other feeding she finished completely, and finished about half of the feedings in between.  Any remainders that she couldn't finish, usually because of fatigue, were fed to her through her tube.  She also took 20ml when we nursed that day.  Now that she wasn't hooked up to everything, they were able to do her hearing screen.  She passed with flying colors.  She did also develop a couple of clogged tear ducts that morning.

Day 24

Another weekend, another visit to Macie for the kids.  Charlie and Ephram were able to get much closer to her then last time.  They both were very curious about her, and very gentle.  We spent more time at the hospital than anticipated because the boys were behaving so well.  I think they made it almost two hours in Macie's room before things started to fall apart – and then Andy took them on one of their many "hospital adventures" so that I could have some more time with Macie.  Macie pulled 32ml from me when we nursed that day!  She was taking 45ml feedings, so this was very good.

Day 25

We returned to the hospital with the boys on Sunday.  They didn't do quite as good as they did on Saturday, but still pretty impressive for their ages!  We were able to be at the hospital with Macie for about five hours.  During that time I nursed her twice, once she got 16ml and the second time she got 14ml.  I was a little disappointed considering that she'd pulled 32 the day before.  However, Macie had taken all of her feeds orally that morning, so she was very tired from the associated effort.  She was able to finish the remainder of her feeds by bottle both times that I nursed her.  In addition, her feeds were increased to 47ml a day and she was tolerating the new volume.

We were thrilled that she was eating without the use of her tube, but she did seem very fatigued by the effort, so we were sure that her success for the day would come to a close soon.  About half way through our visit, Macie sneezed her tube out a few inches.  We called the nurse to put it back in before she could pull it out completely and have to go through the ordeal of having the whole thing put back down.  About ten minutes after the nurse left, she sneezed it out again, grabbed it with her hand, and had it yanked out before we could do anything about it.  When the nurse came back she removed it and said that we would put a new one in whenever she tired from the oral feedings and needed it.

I hadn't seen Macie's face free of everything since we were in the operating room together.

We also gave Macie her very first bath.  We had two nurses that day, so with the two nurses and me crowded around the sink and Andy corralling kids on the other side of the room, we weren't able to get pictures.  Andy tried to shoot some from the opposite side of the room, but there was too much in the way.  Bathing a preemie is much like a newborn, except you have to do it even faster.  You also wrap them in a blanket as you put them in the water to help maintain some warmth… as you wash each body part you unwrap it for the moment that is needed.  From beginning to end, a preemie bath should be under five minutes.  It may be awhile before we get good bath pictures of Macie.  :)

The best surprise of Day 25 came when I called to check on Macie that night.  When I did, I found out that she had taken all of her feedings by nipple in a 24-hour period!  She still didn't have a feeding tube.

Day 26

On Monday I tentatively walked into the NICU, scrubbed in, and rounded the corner through Macie's door.  All night I had dreamt of Macie without her feeding tube.  But the realist in me figured that at some point she had needed it to be reinserted.  At the same time, I was very hopeful to find her still tube-free.  I almost had to close my eyes when I walked over to her because I was too nervous about which situation would be real.

She still had no tube!

Even better, her nurse came in about a minute later and told us that she was taking all of her bottles within 15 minutes.  That showed that the energy needed to eat wasn't tiring her out as much.  She was also getting to be a less messy eater, which showed that she would be able to eat and retain the feeds enough to gain weight.  And then she said, "So, you're going home tomorrow!"  

I was washed over with a feeling of total elation.  Much like the feeling you get when you've been running for a couple of miles and all of the sudden you sense that there can be nothing wrong in the world.

Macie was coming home.  Tomorrow.  As long as she kept eating and growing.

And as long as she passed the car seat test.

All small babies have to pass a test where they sit for at least 90 minutes in their car seat while being monitored for pulse, breathing rate and blood oxygen saturation levels.  This is just to ensure that they are safe, and I found it reassuring.  However, we didn't yet have a car seat.  We had picked out the brand we wanted, but there were two different versions of the car seat model that they had told us was small enough for preemies.  I had asked everyone there that I saw for about four days if the Chicco KeyFit 30 would have the right measurements for her, or if it had to be the KeyFit 22.  Nobody knew until someone finally handed us a car seat folder on Sunday that showed that the KeyFit 30 was preferred.  I had ordered it on Amazon that night and requested next day shipping just in case she discharged early.  The nurses that day had told us that we'd probably be looking at a discharge of Thursday or Friday.  So I thought that if my car seat arrived on Tuesday, we'd be good.

Only problem is that Macie learns too fast.  It was Monday and we were being discharged on Tuesday, which was when the car seat was supposed to arrive at my front door.  Sometime during the day.  We told the nurse and she said that should be fine, that the car seat test could be done on the day of discharge.

The night nurse that was with Macie between Days 25-26 had written us a note on the whiteboard in Macie's room that showed her stats from the previous night.  It was fun to see how much she'd grown.

I had planned to stay with Macie that day when Andy had to leave, and then he was going to come back and pick me up after dinner.  However, once we learned that she was coming home, I realized it was necessary for me to leave her.  We had a ton of work to do at home!  We made a list so that we could start knocking things out as soon as we got there.

It was hard to leave Macie, but easier knowing that the next day she'd be leaving with us.

Andy and I got home at 2pm and worked straight through the afternoon, evening and past the witching hour.  I think we went to bed at 2am.  And our house was ready (enough) for Macie to come home.

Day 27

We were really tired on Tuesday morning as we made our way into the NICU for what we hoped would be the last time.  Our car seat was on a UPS truck and labeled "out for delivery".  But the UPS route usually brings our packages either at 9:30am or 5:30pm.  We had left the house at 10am, and no package had arrived.  

When we got to Macie's room, she was still without feeding tube and looked great.  I am still shocked at the transformation she made in less than four weeks' time.  Andy stepped out of the room to grab a drink from the nutritional center and ran into Macie's nurse.  She told him that Macie had been discharged and that the only thing that we needed to do was the car seat test.  Andy told her that our car seat was still in transit, and she told us that it wasn't a problem… we just needed to have it completed by 7pm.

When the nurse came into our room she told us that we were free to do whatever we wanted with Macie since she had been discharged.  We could even unplug her monitors.  It was very weird to think about my little girl not having a machine tracking how well she was breathing or what her heart rate was.  I left them attached for most of the day.  It was my last chance to associate her breathing patterns and noises with what actually was occuring to her body.  I used our hospital time to familiarize myself with what was of concern versus what was normal.  For instance, I learned that after she eats she always bears down to pass gas.  With that she grunts and makes a couple of squeaking noises.  These are different from squeaking noises that she might make while being held that can indicate she is having difficulty breathing and needs a change of position for her neck alignment.

Macie's nurse came in several times to make sure that we had everything we needed for home.  The hospital supplied us with several things to make sure that Macie can continue to thrive.  We have bottles, preemie nipples, milk containers, formula canisters, syringes for vitamins, saline wipes, saline drops, vitamins, pacifiers, hats, a wash basin and so many other things that I can't even recall.  The lactation consultant and social worker also stopped by to let us know that we are able to use them as a resource even though we are discharged.  A photographer stopped by to see if we would like photos of Macie.  Of course, I did.  It happened to be right before Macie was about to eat, so we asked if she could come back an hour or so later.

Meanwhile we were still tracking the car seat, hoping it would decide to show up.  Andy would have to take about an hour round trip to pick it up once it arrived, and then get it back to the hospital in time for Macie to sit in it for at least an hour and a half.  This all had to happen with enough time for us to receive the remainder of our discharge instructions and physically leave the room by 7pm.  We decided to wait and see where it was after we ate lunch, and then to decide what to do.

The photographer came back while Andy was down in the cafeteria.  The pictures she took were really good, and will be shared at a later date.  Andy got back to the room about halfway through the photo session so he got to be in a few of them too.  We ate our lunches and then checked on the car seat once more.  It was still in transit and it was 2pm.  We decided that Andy would go to Babies R Us and buy another car seat.  When the car seat arrived, we would send it back to Amazon.  Andy headed out and I settled in with Macie, gave her a feeding so that she wouldn't get fussy once the car seat test was underway.  I didn't want anything to ruin that test!

Andy returned and the test started.  I was glad to have some validation from the monitors that she was safe the way that she was positioned, because she just looked so small in there!  I was surprised that she didn't need any blanket rolls or washcloths to help support her.  Macie doesn't weigh much, but she is nice and long!  During the test Macie was stooling.  I was a little worried because she kept holding her breath to bear down and the oxygen saturation would drop into the 80's and sometimes the 70's.  It was fine as long as it came back up within two minutes.  But there were a couple of close calls.  I kept telling her that she should just wait until the test was over!  At the end, everything was fine and Macie passed.

We packed up and the nurse gave us some more things to take home.  I changed Macie into an outfit that we owned instead of the hospital outfits she'd been borrowing.  The leads were removed from her chest and my baby was officially 100% free of all wires and tubes.  I hope that she never has to go through anything like this again.

When we got home, we were greeted by a welcoming sign that Charlie and Ephram had made with our nanny.  Finally, all five of us were home.

Now we are taking care of our daughter at home, without help from any nurses.  Even though she will be a month old tomorrow, she is pretty much like any newborn baby when they first come home from the hospital.  She even weighs now what Ephram weighed the day that he came home.  She eats round the clock, which means I am not sleeping much.  But I don't care.  My baby is where she should be.  She's healthy and I'm happy.  So what if I am a bit of a zombie for now.

Macie lived in the NICU for 27 days.  27 days that stretched on forever and were filled with emotional intensity beyond anything I would have imagined.  Andy and I spent 33 consecutive days at this hospital, with at least one visit a day.  For me, this has been the single most impactful life experience I've had so far.  Amazingly, I would say that its impact has been overwhelmingly positive.  I have learned a lot about myself, my relationship with Andy, the strength of my family and my daughter, my ability to give over control and rely on professionals and the support and compassion of community.  Beyond that, I have learned that sharing my experience can have great affect on those around me.  At the same time, I hope that this remains the most impactful experience in my life.  I think I've learned enough lessons for a good, long while.