Charlotte's Last Day in the NICU

The day Charlotte went home was also the day they moved the NICU from the 2nd floor to the 4th floor.  Here are some pictures of her new digs and her last hour before we brought her home.

Emily reviewing Charlotte's discharge report.

Our favorite nurse Dee Dee made this sign.  But we never got a picture of her, just the sign she made.  Dee Dee was the nurse who gave the specific directions to me on how to pace Charlotte's feeding.  It was those directions that helped Charlotte turn the corner with her feedings and finally get to go home with us.

Hurry up and finish that bottle Charlotte so we can go home!

One final NICU family portrait.

Locked and loaded and ready to go home.  Our friend Julie Cannon knitted this hat for Charlotte.  Those aren't her real ears.

Happy um Halloween... in a November sort of way

 

 

 

Fall hat knitted by our friend, and Emily's childhood friend, Joanna.

One of Charlotte's NICU nurses made this sign for Charlotte.  This was as close as we came to celebrating Halloween this year. 

Go To Your Room

A few people have asked what life in the NICU is like.  It's a fair question because only five people are allowed access to Charlotte, aside from her nurses and doctors.  Those five people would be me and Emily and then we are allowed to put four people on a list who can also come into the NICU with us.  These four people are allowed to look, but can't touch.  We put Emily's mom and her sister Jessica, and Jessica's husband, Ben, on the list.

So we have a fourth name we can add to the list.  I am willing to sell that vacancy to the highest bidder.  But be forewarned, I've got this thing and it's effing golden.  And I'm not giving it up for effing nothing.

So what is Charlotte's world like?  In a word, limited.  She spent the first three days of her life on the south side of the NICU where the most fragile kids stay, and then when she moved off the CPAP tubes in her mouth, she graduated to the north side of the NICU.

She gets out of her crib for feedings, to be bathed once or twice a week, and to be weighed.  Otherwise, she hangs out in her crib.  This may not sound like much, but she is certainly a lot more active than her age-matched, in utero peers.  So here is a tour of Charlotte's world.

This is the room Emily and I stay in in between feedings.  Emily stayed here every night until a few days ago.

How we typically pass the time: surfing the web, reading, watching TV, talking to visitors.

To the left is the nursing station and to the right is a hallway leading to the infamous room 211 where Emily stayed during her bedrest.  That door is the secured entrance to the NICU, where Charlotte lives.  We can bring her up to the window for people to look at her.

Charlotte's "room."  Curtains for walls, sterile bin for a crib, and a oxygen saturation monitor for an entertainment center.

Charlotte's kitchen.  Whatever milk she doesn't take from a bottle or nursing is fed to her through an NG tube via this giant syringe.  The machine it is hooked up to delivers the milk at a set pace.

A room with a view.  From our vantage point we can see Charlotte's neighbors, depending on whose walls are up or down.  You get to know a lot about the parents around you without ever talking to them, but just by listening to them talk to everyone else.

Our living room.

Not a perfect home, and not what we imagined, but it's worth it.

Busman's Holiday

The doctor yesterday stated she wanted a Speech Language Pathologist (SLP) to do a consult with Charlotte.  Hey that's me!  I let the doctor know not only was I an SLP, but I specialized in fluency disorders, language disorders in adolescents, and metalinguistic skills for receptive language.  I couldn't wait to help!

Unfortunately Charlotte's problems are more basic.  They are a little concerned with the speed with which she is picking up oral feeding.  Some of you may know, SLPs also specialize in swallowing and feeding issues.  Well other SLPs do.  I don't, especially in newborns.  

Anyway, by Monday we will have an SLP visit and hopefully she will have some tips for us and the staff to help out Charlotte.  Bottom line is Charlotte continues to grow and get stronger.  Last night Emily noted how much stronger Charlotte's neck is.  Charlotte has some really good feeding sessions but not on a consistent basis, and that is the biggest road block we face to getting her home.  So hopefully the SLP will be able to help.

This is How We Do

This is a super cute thing that Charlotte does - she often rests her sleepy head on her hands.   

Kangaroo care is when a baby and parent spend a chunk of time "skin-to-skin."  It is used around the world and has been shown to help preemies with respiration, body temperature, weight gain and nursing.      It is also beneficial for bonding, which is important for baby and parents especially when baby is still in the hospital and the parents can't be there all the time.  Mike or I try to do it everyday.   She'll be all wiggly and then when you hold her like this, she becomes totally peaceful.  So peaceful that I used to fall asleep all the time too, until some nurses urged me to start taking naps.  

What's Charlotte Up to?


Charlotte is 2 weeks old now and has made tremendous progress. She loves to grab any tubes attached to her and pulled off her canulla in the night, but her oxygen saturation didn't go down, so it was decided she didn't need it anymore. 

Charlotte with her mittens taped to her arms because she loves to pull on all her tubes.

She moved out of the isolette (her "condo" as the neonatologist fondly referred to it) because she can now regulate her body temperature. 


Charlott'es vacated "condo"

She is now in a regular crib and wears clothes.  In order to take her home she has to be breathing without help, able to regulate her own temperature and getting all her nutrition orally.  So, she's good on the first two and now we just work on eating.  She still gets most of her nutrition through her feeding tube.  Being a preemie, she just doesn't have the muscle for sucking yet, and she doesn't have the coordination of sucking, swallowing and breathing.  We work on nursing a few times each day.  At first, she would just suck and swallow and forget to breathe (and one time turned blue).  Then she was able to nurse for a few minutes before she fell into a deep sleep.  Now we go for about 10 minutes before she is worn out and she is getting more efficient.  She gained about 8 ounces since she was born and has increased her feedings.  Everyday, we are closer to bringing her home.

As parents, Mike and I also made tremendous progress.  We gave her a bath for the first time (there is a video somewhere.....).  I had my first freak-out as a mom - about baby poop.  I didn't read the last chapters of the baby books and I don't know what's normal for a newborn.  I may have babysat a lot as a teen, but never newborns.  Anyway, the very patient neonatology nurse practitioner assured me that Charlotte and her poo were totally normal.  Well, that's a relief.  I swore I would never be one of if those people whose facebook status updates are about baby poo.  I think this is the appropriate venue, if there is one, for such information.

Family Portrait #3

Charlotte is two weeks old as of yesterday.  Actually, she's negative four weeks according to something called gestational age.  This leads to some confusing situations.

Last night Emily and I came in from a date night at Culver's after visiting hours.  This means we have to go past security to get back to our room.  Actually, the security guard was the first to be confused.  I explained to the security guard that our daughter was a patient in Labor and Delivery and we were taking care of her.  And he said, "Oh did your daughter deliver a girl or a boy?"  Fine, I get it.  We are old to be parents to a newborn, but we're not THAT old.

So after finally sorting that mess out, he wanted to know how old Charlotte was.  And there was this long pause and I could sense that Emily was trying to figure out how to explain to this guy gestational age vs. chronological age.  So I just jumped in and said "She's two weeks old," which satisfied his quest for knowledge.

But it was somewhat illustrative to how wrapped up in your own little world you can become as a parent.  I easily forget that people I don't know well, or at all, are just happy for me and Emily because it reminds them of their own journey as a parent.  The details of NICUs, CPAPs, negative ages, and car seat tests really are not important and trying to explain it takes too much time.  So it's easier to leave all that out, but hard to remember to do that when you are so wrapped up in the moment.

Anyway, in the two weeks we've been with Charlotte, I noticed there are a lot more pictures of me holding Charlotte than Emily holding her.  That's because I'm not nursing or pumping.  So I made a point to get a few pictures of Emily and Charlotte last night that wouldn't spark the whole "Is it okay to nurse in public?" debate.

Below is our third family portrait and the first since Charlotte graduated to the "Big kids' side of the NICU" as one of the nurses called it.

Proud Parent

My daughter is an honor's student at Fairview Special Care Nursery School.

Mike and Charlotte

In the NICU, preemies are on feeding schedules while they are still getting nutrition primarily from a feeding tube.  Charlotte is on a 1, 4, 7, 10 schedule and Mike is always here for her 7 pm feeding.  We sit together in our little area and enjoy some quiet time as a family every night.

Hiccups

Emily shot this video last week with her friendly robot iVerizon smart pda phone thingy.  Sometimes she uses it to make a phone call.

For Archival Purposes

Here are email updates that Mike sent to our families during Charlotte's first days (before we started this blog).  I pasted them together here for archival purposes.

_______________________________________________
From:  Michael Nawrocki
To:  halfdrunkcanofpop
Date:  October 5, 2010 3:09 PM
Subject:  Happy Birthday

Charlotte James Nawrocki
5 lbs 3 ounces, 18 1/2 inches
12:23 p.m.

Emily did great.  C-section birth ordered by the doctor around 9 a.m. Ben was with us and got some beautiful pictures.  Emily is recovering nicely and Charlotte is in the Special Care Nursery on a CPAP machine to keep her lung pressure at a level where the alveoli can stay inflated, but otherwise she is breathing on her own.  So she is having a tad difficulty breathing but this is pretty standard stuff for a baby born at 33 weeks, 6 days.

Pictures to follow.

So Charlotte won the race against her cousins, which we really wanted her to lose but, who cares?  She is beautiful and in the hands of some of the best medical practitioners in the world. And I almost lost a race myself.  On the way over I thought I'd take Shepard Road as a shortcut to get to Crosstown.  But at 35E and Shepard Road traffic was a at a standstill.  I was pinned with an 18 wheeler behind me and to the left of me and a Schwann's delivery guy in front of me.  I waited there for 45 minutes.  I got out and walked up to what was going on. Joe Biden was on his way to the airport and no one could pass until he went by.  He was in town to stump for So there we sat.  I thought, "If Joe Biden makes it so I miss my baby's birth, I am definitely voting for Tom Horner this fall!!!"

_______________________________________________
From:  Michael Nawrocki
To:  halfdrunkcanofpop
Date:  October 5, 2010 3:16 PM
Subject:  Re:  Happy Birthday

p.s.
Full head of black hair.  Long toes.  Allegedly she has her father's eyes, but we can't confirm that because they are always closed. I miss her.  Think I'll ditch Emily for awhile and see how Charlotte is doing.  Feels weird and great actually calling her by a real name.

_______________________________________________
From:  Michael Nawrocki
To:  halfdrunkcanofpop
Date:  October 7, 2010 12;25 PM
Subject:  Charlotte Update

Charlotte is doing GREAT!!!!!!!!  After a trial run of taking her of the CPAP yesterday (and replacing it with a cannula)  failed, last night was spent getting her back to equilibrium.  She did great through the night and they tried again this morning right as we walked in late this morning.  They took out the CPAP and put in a cannula. And this time it took.  She stayed calm and her breathing and blood O2 sats stayed well over 90% (the goal), so they let us hold her.  Highlights:

1. We saw her open her eyes for the first time and she looked right as us when we talked to her.
2. We both got to hold her.
3. I changed my first diaper ever with a lot of help form the nurse.
4. She took her first feeding of Emily's breast milk.  Emily has been pumping every three hours and they have been storing it up for this moment. And they feed through a tube.

Video and pics to follow sometime between now and when Charlotte turns 18.

_______________________________________________
From:  Michael Nawrocki
To:  halfdrunkcanofpop
Date:  October 7, 2010 2:34 PM
Subject:  Emily Update

Both Ben and Beth have asked for updates on Emily.  Emily is doing awesome.  We have ditched the wheelchair and she walks to and from the nursery slowly but easily.  Her husband needs to be retrained because he keeps walking at normal speed.  Then I'll hear this "okay bye" and I turn around and she's ten yards back.

Physically there is still pain but nothing unusual.  For someone who whines about people on the radio in the morning (or any time of day, she would like me to correct), she sure is one tough lady. Emotionally, she is super happy.  So am I.

_______________________________________________
From:  Michael Nawrocki
To:  halfdrunkcanofpop
Date: October 9, 2010 9:13 PM
Subject: Re:  Cottage conference thought

Just as a heads up, I am not sure how many visitors Charlotte would be able to see.  Charlotte's immunity will not be up to snuff when we take her home.  Exactly what that means in terms of who can visit and how often remains to be seen.  We are taking this one day at a time and will keep everyone posted on that.  The possibilities range from no restrictions to a lot of restrictions.

I hope it's okay if I hijack this thread to briefly say Charlotte is doing great.  She is breathing on her own and off the IV.  She still needs the light for jaundice prevention and she still needs support to maintain her body temperature.  She now only has one tube in her, an NG tube for feeding.  Two days ago they gave Charlotte 5 cc of Emily's milk to see if she could tolerate it.  When I left tonight after her last feeding, she took 35 cc. Emily is getting to the point where she can keep up with the the demand, in tems of what she can supply.

Emily is kicking ass too,  She had a good day today.  Her soreness post-surgery persists and she is not overly fond of living at Fairview Southdale.  But we both agree it is worth it.

No word on when Charlotte comes home,  She has to be nursing independently and pass a carseat test.  So we are on her schedule.  Like I said, we go one day at a time.

_______________________________________________
From:  Michael Nawrocki
To:  halfdrunkcanofpop
Date: October 10, 2010 2:00 PM
Subject: Re:  Charlotte Update

Update #3
Things continue to progress nicely for both Emily and Charlotte.

Beginning with Charlotte,
1. Her biliruben (or however you spell it) count is back to normal so
no more blue light for now and hopefully forever.
2. She and Emily worked on learning how to nurse for the first time this morning.  Charlotte latched a few times which exceeded expectations for a first time trial.  The two ladies will have their second practice this evening.  We used to two-a-days in college for track and cross country.  Quite frankly, those workouts seem a lot easier than the work Emily and Charlotte go through.

Emily...
1. Has a swollen ankle which she researched thoroughly and learned is normal post-pregnancy. But it was pretty painful and stiff through the night and improving today.
2. Had some issues with expressing milk but thanks in part to Jessie's nurse and mostly to a nurse we had here, Emily learned a few tricks of the trade to make things work and now she is doing a great job.  This is a huge relief both mentally and physically (literally) for Emily. And that is really the most I want to talk about my wife's mammary glands with everyone.  Bottom line is she is 100% happier today than she was 24 hours ago.

Charlotte's Birth Story

On Monday October 4, I had an ultrasound to measure the amniotic fluid and it was low.  My doctor said that she'd repeat the next day and if it was still low we'd deliver.  Well, she said that a bunch of times and it didn't happen so I didn't take her seriously.  I didn't even mention it to Mike that night.  The next morning, my doctor came in at 5am on her rounds and told me again that if the fluid was low this would be the day and she told me not to eat breakfast. Well, we'd been through this before, so I didn't bother to call Mike.  At about 9 am, I had the ultrasound and the fluid was still low.  The nurse said that they could get me in the OR for a c-section at 11:30am.  I was not prepared - I had some loose ends to tie up!  I wasn't completely mentally prepared either. I knew we would be having her early, but not >6 weeks early!  So, I called Mike and hastily emailed a few people at work.  The nurse kept coming in to start prepping me for surgery, and I'd say, "I need ten more minutes!"  Then, Mike called and he was stuck in traffic.  Joe Biden was at Macalester giving a talk and the road was closed for his safety.  He was worried that he wouldn't get there in time, but the nurse said they wouldn't start without him.  I called my sister.  My brother-in-law, Ben, had offered to come take pictures so he was on his way.  The nurse started prepping me for surgery and packing up my stuff since I would be moving from an antepartum (my home the last two weeks) room to a postpartum room. 

Ben got there before Mike since he didn't have to deal with the Joe Biden traffic.  Mike arrived and put on his scrubs.  He looked so cute!  Then the nurse said we would walk down to the OR.  What!?  After 2 weeks being confined to bedrest, I was going to walk down the hall!?!  As we were walking down the hall, I had to ask them to slow down because I couldn't keep up.  Even though the childbirth class instructor came and talked to us for almost 2 hours one night, and we knew what to expect, I was really nervous.  I mean, holy crap!  We were going to have a baby in 20 minutes! 

I went in the OR without them and they gave me the epidural and strapped my arms to the table (did you know they do that?  It's instinct to reach out to grab the baby and that would compromise the sterile field) and the guys came in. It didn't hurt, but I felt lots of pulling and tugging. After <15 minutes the doctor pulled Charlotte out.  I heard her cry and it was the most amazing moment.  She was here!  And she was OK!  Crying meant she was breathing!  My doctor said, "say hi!" and lifted her up to the curtain for a split second and all I saw was the top of her head.  Mike could see everything and he just kept saying, "she's so beautiful, she's so beautiful." 

Because Charlotte was a preemie, I knew that I wouldn't get to hold her right away since the neonatologists would take her away for assessment.  During this part, Ben came over and showed me the pictures on his camera, the first time I got to get a good look at her.  Charlotte was breathing on her own, but then she stopped and was in respiratory distress.  Ben had to leave and Mike was with Charlotte. I don't know what was happening while they finished stitching me up, Mike can tell that part of the story.  While I was in recovery, Mike and Ben were in the Special Care Nursery with Charlotte and took more pictures and came back to show me. 

Having Ben come to take pictures was so wonderful.  The nurse had told Ben that he wasn't allowed in the OR, but he would not take no for an answer and kept asking until she said it was up to the anesthesiologist and he was fine with it.  So, Ben got some scrubs.  It was really cool to share such an important day with him.  It also allowed me to see what was going on throughout the whole thing.

Once I was recovered I was wheeled through the nursery to see her for the first time and I put my finger in her hand she grabbed my finger.  She is amazing and beautiful and we are in love.

our first family photo