March, The Third Week

This third week of March
Has sure been a doozy.
It started with part of my tooth breaking off.
Ephram is having a hard time adjusting to the time change.
And I was up with him past 5am two nights this week.
Another two nights this week, I was up until just before 5am with my baby girl.
Who has (at least) three molars pushing through her gums.
Poor baby.
A trip to the dentist revealed a very bad cavity in the tooth behind my broken one.
So I spent two hours in a dentist's chair.
And hope that I avoided what would be my first root canal by the narrowest of margins.
1/8 of a millimeter, the dentist said.
I also had a cold,
That packed a fever,
And some lovely aches and pains.
My Charlie, who's been making some wonderful progress,
Experienced a complete behavior regression this week.
You don't want to know what that involves.
Trust me.
I don't either, to tell you the truth.
My bed was puked on and then peed on this week,
On back-back days necessitating sheets and quilt washed when I was running a fever.
And I threw out my neck somehow.
Leaving me incapable of turning my head to the left for a day,
And twinges when I did for another two days.

There's a lot that I could complain about.
But I don't feel like it.
Because I can't help but remember
My last third week of March.

31 weeks pregnant with my baby girl.
Every day spent at a doctor's office,
Sometimes two doctors, back-back.
Hooked up to machines to monitor my unborn baby,
My blood pressure,
My heart rate.
Blood drawn every day.
The knowledge,
Terrifying,
That it was bad.
I just knew it.
My luck was running out.
Desperation to save my baby,
Tortured by a body that refused to be normal,
Heartache from a need to be with my boys...
And knowing our separation was imminent.

Tomorrow marks one year from my hospital admittance.
It was the first night ever in his life that I did not put Ephram to sleep.
That fact crushed me more than anything else that night.

I wasn't told just how bad things got for me until well after the fact.
My platelets crashed, my renal activity declining,
I was told later that my doctor met with her colleagues
To discuss the very real possibility of a stroke,
Or worse.

I'll admit it now -
I was a total basket case.
I was so paranoid, of everything really.
They were smart not to key me in.
I tried very hard to focus on the positive,
But it was often too hard for me to do.
Which is not the face that I put on for most,
And definitely not the side I chose to show my friends and family.
Because I try to hold myself to a policy to not accentuate the negative in my relationships,
Of trying to focus on the positive.

In many ways that tactic left me very alone in this case.
And put the burden of my anguish on a select few
That I owe everything to.

Even then, through my despair and anxiety, I was aware of my luck.
I am so grateful that this greatest trial of mine also
Gave me a very real, tangible and beautiful reward.
And taught me so very much about
What I can do,
What I can face,
What I have been given,
And humility in knowing that I need help to do the most important things in life.

At first I could not help but to keep a list of
The Things That Pre-Eclampsia and HELLP Took Away From Me
When I discussed it with my select few,
I tried to make it a joke.
But really it wasn't.
It was a great coping mechanism.
No matter the unhealthy aspect of keeping such a list,
It was that list that finally allowed me to
Let go of my guilt over a situation that was truly out of my control.

You don't know how it feels...
Or if you do,
I'm sorry.
To see your baby lying somewhere,
Helpless,
And to know that the only reason
She is in pain
Is because I failed her.
Finally now, I can say that I know it wasn't my fault.
And believe it.

They say I should not have any more babies.
I don't know.
I feel like I'm missing another.
And I can say, now, a year away from that time
I would live through that six months of pain in a heart beat all over again
To be blessed by a lifetime with a beautiful baby.

Still,
When I had a pregnancy scare a month ago,
My only thoughts were terrified.
So clearly, I'm not there yet.
And maybe I never will be.

If there's one thing I've learned
Through my struggles with fertility
And trials faced through pregnancy
And parenting
It is that, His will be done.
And I trust His wisdom.
Because now, with distance,
I see all of the miracles brought by the way this came to pass.
And I know that it was meant to happen.

Lately the question I have been posed,
Over and over,
Is have I fully recovered?
Will I ever be recovered completely?
I have closed a cycle of coping,
Very recently accepting this ordeal for what it was.
I've let go of most of the anger that I held,
Much of it misdirected.
I let go of my list.
Sometimes I can tell people that
Her name is Macie Drew and she's 11 months old
And leave out the part about how she was 2 months early.
(Although I always think it to myself, even if it is not spoken.)

Overwhelmingly, I feel like I am supposed to have moved on.
Be grateful for what I have.
A beautiful, healthy, thriving daughter.
A family that is complete and together.
A body that is still ticking away,
And capable of sitting in that dentist's chair for two hours,
Of taking care of her little ones' needs.
Of pushing through the annoyance of a minor cold and a stiff neck.

Oh, am I grateful.
I don't know words that better express the feeling.
But I also have a very hard time not talking about what we survived.
And I know that it's expected that I let go of it.
But letting go of it almost feels like abandoning the struggle.
And forgetting the journey
That I'm so proud of,
That is one of my most defining accomplishments.

And I haven't been able to do that yet.
So I decided,
I'll write it down.
In the most honest and raw form that I can.
And though you can't see the tears that I cried as I typed this tonight,
They're here.
And they mean the world to me.
They aren't all sad.
They are happy,
They are grateful,
They are proud,
They are fulfilled.
They are in love for my daughter,
And my sons.
And in hope for the continued journey our family will take.

And now I'm making a promise to myself.
I'm going to leave these words here.
And do my best to leave the sorrow and self pity here, too.
Not abandoned, because they're recorded.
Because I understand that those emotions are an important part of the learning, too.

Lately I have been given, and seen, the opportunity to pay it forward.

To give to people the gift that meant more to me than all else last March and April.
The gift of hope.
Sharing our story, offering support to others,
Relating and listening.
That's where I'm focusing this energy now.


I'll continue to funnel my energy on the good that came from our crisis.
My daughter.
She'll celebrate her first birthday one week from today.
And I'll remember the struggle for her.
And because it defines me
And our family.
The worst of this past year will still be there,
But I'll share it only when it can help someone else.
I'm going to accent the best of this past year.
Because that's the legacy that I really want her to own.

So this March, this third week
It's been a doozy.
But definitely better than last year.
This week I escaped a root canal by 1/8 of a millimeter,
But last year my family escaped a worse fate by such a narrow margin.
And I am so grateful to be here to experience life.

Unexpected

We just got back from a fabulous vacation to Southern California.
Eventually I'll blog about the whole thing...
But for now I'm skipping to the present.

Yesterday I was unpacking.
Overwhelmed, I realized that I needed a place to make stacks of our belongings.
My eyes turned to our kitchen counter -
Which was completely covered in other stuff.
So I set about clearing off that counter.

Just before we left our home for the airport, I'd packed my backpack.
When I'd opened it, I realized that it was full of the things that I had packed the last time.
The time that I left my house for an undetermined amount of time in the hospital.
I hastily grabbed those things out of the backpack and left them in a stack
On the kitchen counter.
The items needed for this trip were thrown in,
And out the door we ran.

Last night I reached this stack from my backpack,
Innocently sitting in the middle of my counter,
And I saw these two little teeny tiny beanie babies.
I was hit.
With one of the biggest breakdowns I've had since Macie's birth.
Just like that.
So unexpected.

These little things -
The little monkey,
The little lobster -
Were used for at least an hour, three times a day, every day of my hospital stay.
That was the amount of time that my doctors prescribed for Macie to be monitored.
As I fought against a cruel set of circumstance,
And tried to keep her growing inside.

Macie was so small still, and so was my belly.
The monitors would not stay put on their own,
And they also had a hard time picking up Macie's movement.
So these little things -
The little monkey,
The little lobster -
Were used to put additional pressure on the monitor so that the test would work.

When I saw them last night,
The memory flooded in.
Sitting in that bed.
Trying to relax,
To pass the time with books, iPad, playing cards and phone calls.
Listening for her movement.
Listening to her heartbeat.
Hoping for accelerations.
Hearing over, and over, and over
That she wasn't having the accelerations they'd like to see.
But she was passing by the skin of her teeth.

As a parent,
"Passing by the skin of her teeth,"
Is the opposite of reassuring.
It's like when you have something tested at the doctor,
Like a thyroid,
And when the results come back normal you want to relax.
And then you realize that you are just a little point away from being outside of the normal range.
"Passing by the skin of her teeth"
Made me think that she needed more attention,
And worry that she wouldn't get it because she had just barely passed.

I remember when they decided that I had to have the baby that day,
As soon as possible,
The nurse came in and asked me if I wanted to be put on the monitor.
I did, so very much.
I wanted to listen to my baby's heart,
To believe it was strong,
And knowing that I wouldn't ever hear it like that again.
Even though I should have had seven more weeks to enjoy it.
Realizing that the sound of my heart was about to be taken from her.
Seven weeks before nature intended.
Because of a condition that nobody can control.
So unexpected.

I will always be a little sad that this pregnancy ended early.
Sometimes I will be very sad, as I was last night.
I do not deny that the experience brought at least as much blessing as it did pain.
And I would not trade a day I have had with my Macie now.
But I will also allow myself to feel sad when it hits.

I threw away almost every thing that I had in that backpack.
But these little things -
The little monkey,
The little lobster -
I kept.

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 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.

Macie in the NICU: Week 3

Macie followed up a great second week with a good third week too.  Every baby has to meet three milestones in order to come home from the NICU.  They must be able to breathe on their own, although some babies do come home on cannulas or with instructions for apnea.  They have to be able to maintain their temperature to be warm in a room air setting.  And they have to be able to eat sufficiently on their own to grow, although some babies do come home on feeding tubes.  Of course there are other scenarios that can occur with preemies, but these are the basic three criteria.  At the end of week two Macie had met the breathing criteria, was making process on maintaining temperature, and was nearly ready to begin working on nipple feeding.  So during week three the focus was on maintaining temperature and non-tube feedings.


Macie was gaining weight steadily, which prepared her to work on maintaining her own temperature.  Last week I wrote that she had been transferred from her giraffe bed to a standard isolette.  Two days after moving to the isolette, Macie successfully maintained a normal temperature with the isolette set at 28 degrees Celsius.  28 degrees represents the closest they can get to average room temperature.  Because she was able to maintain a normal temperature for more than 12 hours at simulated room air, she was moved into an open air crib on Monday.  For the next 24 hours they monitored her closely to make sure she was doing well.  She did have to go back into the isolette briefly on Tuesday morning, but after that was successful and made a permanent move to her crib.  The isolette was wheeled out of her room on Thursday.  The nurses had told us that this milestone was one that Macie would just do when she was ready... turns out that they knew what they were talking about!


Feeding is taking a lot more work than the second milestone, as we expected.  Macie had worked her way up to full size feedings by the end of week 2, but was receiving them all through a feeding tube.  Because she was still having frequent respiratory escalations, we were unable to start teaching her how to eat from a nipple.  If we would have tried, she would likely have choked and sputtered too much.  Additionally, Macie was often not alert at feeding time.  One of the keys that the nurses look for as a sign of nipple feeding readiness is that the baby will be alert at feeding time and queuing that she is interested in eating via mouth.  On Saturday this week, Macie had a sudden drop in the number of respiratory escalations she was displaying.  The doctor on staff felt that she may be ready to start trying to nurse or bottle feed.  Macie happened to wake up before the feeding when I was there on Saturday and was sticking her hands in her mouth.  When I picked her up she started rooting.  So we tried nursing for the first time.  It wasn't a great success.  Macie was not able to latch, but she was excited and showed a lot of interest.  On Sunday we tried again.  Macie was able to latch three times, but only for a brief moment.  She was successful at getting a few drops of milk, but nothing more.  Preemies are learning how to differentiate between their eating and breathing tubes.  Often times they are not able to breathe well while they are sucking and swallowing.  So they need to take frequent breaks to catch up on their breathing.  When Macie was taking these breaks, she was losing her latch and then had a hard time getting back on.  We tried again on Monday with similar results.  Finally on Monday our efforts registered a very slight weight gain.  Macie got 3 cc's of milk nursing that day.  She needed 42 cc's to achieve a full feeding, (her feeding volume was moved up on Sunday due to weight gain.)

Also on Monday, Macie started waking more frequently before feedings.  Her nurse called me in the morning to ask about our opinion on bottle feeding.  Andy and I had discussed this at length, and made the decision that bottle feeds would be necessary.  Because of our circumstances and schedule, we are only able to be at the hospital for one or two feeding sessions per day.  Macie just can't meet her feeding goals with only 1-2 practice sessions a day.  The nurse fed her first bottle on Monday at 11:30am.  Macie finished all 42 cc's on her first try! We were there for her 2:30pm feeding, where she got only 3 cc's nursing.  I fed her a bottle afterwards and she was able to take the remaining 39 cc's successfully.  She was a natural.  The nurses showed me how to hold her head tipped to the side when giving her a bottle.  This allows the milk to pool in her cheek instead of forcing it all to the back of her throat, and helps prevent gagging.  They additionally showed me how to empty the nipple during her breathing breaks and how to hold the bottle like a pencil at the top so that Macie would not have to bear the weight of the bottle.  Feeding a preemie is a lot more involved than a typical newborn!  Beginning on Tuesday, Macie was taking every other feeding by bottle.  I felt like it was a fantastic start!  On Tuesday I also tried using a nipple shield during our nursing session, which makes it more like the nipple of a bottle and therefore easier to latch, detach and relatch.  Macie was able to pull 14 cc's nursing that day.  The next day she got 18, a full third of her feeding.  Our timing was off on Thursday, and we were not able to make an attempt.  Instead, Andy was able to hold her during a tube feeding for his first time.  

On Sunday the doctor on staff, Dr. Conrad, came in to speak with me while I was visiting Macie.  He explained that her second PKU test, which is the standard Washington state screening done on every newborn, had come back with an anomaly.  Macie's results showed that she may have a condition called adrenal hyperplasia.  Normal practice is to do a repeat screening to verify the results.  They did a third PKU test on Sunday and sent it into the state, along with some extra blood to test her electrolyte levels for another indicator.  The results should come back early next week.  At this point we are not very concerned.  These tests pick up more false positives than most because they are trying to catch every baby that might have one of the genetic conditions screened for.  If the third test comes back with the same indicator additional screening will be done.  If Macie has adrenal hyperplasia, it means that both Andy and I carry a gene for the condition.  It is not a terrible condition and is easily treatable.

The neonatologist at her delivery, Dr. Lawson, came in to talk to us on Monday.  He said that they were all very pleased with her progress.  He confirmed that she simply needs to learn how to eat in order to come home, and estimated another 1-2 weeks for her to achieve this.  We are so happy that her homecoming is getting closer!

Here are a couple of other things that happened this week:

• Andy held Macie for the first time.

• Macie wore her first outfit.

• Charlie and Ephram came to the hospital on Saturday to meet Macie for the first time.  We had delayed this meeting because of her fragile condition and all of the equipment surrounding her prior to this week.

• Macie matured to a new preemie stage that includes more alert periods.  We had time periods between 20 – 60 minutes where she was awake and interacting with us to a degree.

• Dr. Lawson ordered her pulse oxygen saturation monitor be removed, as she had maintained sats consistently since being removed from the ventilator with very rare dips to the 80's.  Macie now only has the leads to monitor respiration rate and heart rate – things that every NICU preemie has.

• She hit 36 weeks gestation, just one week away from being full term.  (Babies 37-42 weeks are considered full term.)

• We were able to hold her for increasing lengths of time, and now often hold her during the entire period we are with her.

• Andy changed her diaper for the first time.

• Macie reached 5 pounds on Thursday, her 3-week birthday!

Here are some pictures of Macie during week 3.

Macie in the NICU: Week 2

Macie's second week in the NICU was much better than her first.  We had a positive trend throughout the week.  Interestingly, I found that my emotions were more intense this week.  Once Macie was through the most intense part of her recovery, I finally processed everything that had happened.

Macie continued to breathe room air, without any assistance from the cannula, since she was taken off of it.  She still breathed very rapidly at times and had some retraction take place.  The doctors told us that would improve as she continued to heal.  Her chest tube wounds were healing nicely with no sign of infection.  We were thrilled that she was able to maintain her blood oxygen saturation levels in the 90's without any extra flow or oxygen assistance.  The tabs for the cannula remained on her cheeks for most of the week.  Once they were removed we were happy to finally see her face.  She's a pretty little girl!

Macie still had slightly elevated bilirubin levels at the end of the week, which is the indicator for jaundice. Her levels were not high enough to be of concern and were considered normal for her weight and age at that point.  She did spend one more day under the blue lights as a precaution, but we did not anticipate her needing them again.

Feeding was our big focus during the week.  When they fed Macie it was through a tube that was first down her mouth, because of the nasal cannula, but was then moved to her nose after two days of no cannula assistance.  They gave her time to digest the milk and then, before her next feeding, would pull back from the tube to see if there were any residuals that had not been digested.  Macie had a ton of air in her stomach, which also impeded her digestion.  In the first days they were pulling back residuals of 5-9ml after only giving her 2ml to start with.  That is why they were not able to advance the amount of milk she was receiving.  Once she was finally of of the morphine, her body was better able to process the milk.  She also started stooling regularly.  On the first day of week 2 they were able to advance her to 9ml per feeding.  She tolerated it well so she then went to 16ml the next day, and 23ml the following day.  At 23ml they began fortifying the milk with a Similac formula that basically adds extra protein to help her gain weight.  With that, they were able to take the fat emulsion off of her IV.  When she hit 30ml, which is an ounce, they were able to take her off of her nutritional IV fluids.  That day her PICC line was removed as she was completely IV free.  Our little girl that had been attached to every piece of available equipment was suddenly only attached to leads that measured her heart rate, respiratory rate and oxygen saturation levels.  It was such a relief to know that she was free of all of those other things. We had been wary of infection with each thing that needed to stay in her body longer than a few days, and we luckily had no infections to deal with.  That same night they moved her to 35ml feedings, and the next morning she reached her full feeding of 38ml.  She only had to skip on feeding during the rest of the week due to a large residual.



Feeding is a task that we will be working on for some time.  Macie continued to have a lot of air in her tummy and spit up little amounts after most feedings.  One time she threw up, but it was her first morning feeding and she had no more issues that day.  The speculation was that she might have reflux, as did Ephram.  She still received her feedings through a tube.  It is connected to a pump that distributes her feeding over the course of a half hour.

When we were there I held her during the feedings.  She started to show the very beginning signs of wanting to nurse with some rooting.  However, as long as she had frequent rapid breathing spells, learning how to eat through her mouth would be a challenge.  Preemies have to learn how to differentiate between their breathing and drinking tubes.  Because Macie often had to breathe very fast to maintain her sats, she would likely choke and sputter if we tried to feed her.  We were not able to start nippling during this week and hoped for progress in week 3, but it was truly all up to her lungs.  In order to come home, she must know how to breast or bottle feed, so this did delay her homecoming.

We started to work on another homecoming milestone this week as well, the ability to maintain her temperature.  During the weekend Macie struggled to keep her body warm and needed the ambient temperature in her bed to be turned up and to be covered by a blanket.  By Tuesday that started to improve, which was likely because of her success in taking larger feedings and the accompanying weight gain.  They began lowering the temperature of her bed gradually.  At the end of the week they were able to transfer her from her giraffe bed to a standard isolette, with the temperature set at 29.5 degrees Celsius.  28 degrees Celsius is room air temperature.  Once she reaches that and can maintain a normal temperature for 12 hours, wearing a onesie and covered with a blanket, she will get to try a day in an open air crib.  If she is able to maintain her temperature over 12 hours there, she gets to stay there. 

Other things that happened this week:

• Macie got her first binky and enjoyed sucking on it at night and when she was upset.
• Macie's weight increased to 4lbs 6oz.
• I held Macie every day during the week for time periods spanning between 30-75 minutes.  The first couple of days she fussed during transitions, but appeared to know me well after that.  She would snuggle right in and go into a deep sleep.
• Macie was moved to a third room because of an issue with the plumbing in her room.  She became a resident of room 4141.
• Easter was this Sunday.  When we went to visit her I promised Macie that her next holiday would be a bit more exciting.

We expected Macie to be in the NICU for another 2-3 weeks.  At the end of the week, Andy and I started to get busy in our preparations to bring Macie home.  We needed to research and purchase a new car seat because ours was too big for her.  And, because she came so early, we hadn't yet prepped the house.  We needed to do simple things like bring the swing and the bouncy seat in from their storage spots.  We were in the midst of moving Ephram into Charlie's room, (our initial goal was to complete that in March - which is when everything happened,) and turn Ephram's room into a little girl's nursery.  We went to the hospital every day for about four hours.  We wanted to spend more time with her, but also needed to care for the boys and help them feel stable after all of the commotion they just survived.  Additionally I continued to have medical issues which required a substantial amount of medication, and it was not safe for me to drive or to be alone.  At night I ached the most to be with Macie, and when we were with her I worried about Ephram and Charlie.  There was not a good solution, and I looked forward to a time when we would all be home together.