Letter to a new NICU mom

Dear Christine,

I know how very challenging it is to be a mom.  And you are suddenly a mom in spades: triplet girls, all sharing the NICU with Kenna.  It's something like being baptized with fire I imagine.

As the seasoned mom of two teens and a 24 week preemie, if I can offer any advice or insight into this experience it is this...

First and foremost, bask in the beauty of each moment.  It is so easy to get wrapped up in all the medical speak.  It is so easy to be distracted by all the tubes and probes.  See past all that and enjoy each special moment with your babies.  I know that each day, Sam and I would go in there and get the updates on Kenna's medical condition and then focus on all the good stuff...like whose fingers and toes she had, what color her hair was going to be, and all her adorable expressions. 

Remember that while the NICU and your babies are the focus of your life, you still need to achieve a balance to stay sane and healthy.  While there are nurses to care for your babies at night, don't feel guilty taking in a movie with your husband or taking a day trip as this journey goes on.  It will mean so much to your mental health and the babies need a sane mommy.  Sam and I ran away to the beach for a day trip.  We visited Kenna before we left and we called and checked on her when we made it home that evening.  And in the middle, we connected like we so desperately needed to.

Keep in mind, daddys are different from mommys.  I need to be there every day.  I need to see and hold Kenna.  I need to speak to the doctors and nurses and be on top of everything.  Sam needs to focus on work during the week and comes on the weekends.  It isn't that he is deserting me or not supporting me, it's not that he doesn't care about his daughter.  It's all about making sure Kenna has a home to come home to.  You and your husband will figure out what works for you.

This is a roller coaster ride.  The highs are so high.  The lows are gut wrenching.  There will be many of both.  In the end, you will be able to look back and see more good than bad.  You will bask in the each small victory.  And when the lows happen, you will put on your game face.  Know that it can change so quickly...even in the course of a day.  The day that Kenna was diagnosed with NEC, she wasn't quite herself in the morning and by five in the evening she was limp and practically lifeless.  If I didn't believe in the power of having primaries before that, NEC sealed it. 

Which brings me to the this suggestion: find your babies some primaries.  I have night primaries and day primaries.  I love the team of nurses assembled.  They are smart and funny and talented and everything I could hope for.  They are superb communicators, whether it means sharing news or talking me off a ledge.  They help me hold it together.  They help me even more when I can't.  They are part mind reader, part miracle worker and all heart.  My primaries send me pictures and messages by text.  They are more than nurses and have become friends and family.  You will need that.

Never forget that you are the mom.  You can stand up to the doctors and offer your opinion.  I spoke to the doctors about how I wanted to approach the Bubble CPAP after NEC.  I voiced my thoughts on feedings.  I have questioned the necessity of tests.  I'm Kenna's biggest cheerleader and her biggest protector.  I have known her longer than anyone.  The same is true for you and your girls. 

During this time, don't be afraid to ask for what you need from your husband, from the nurses, from the doctors, from friends and family.  It's okay to tell people that they can't come to the hospital right now, that they will see the girls when they come home.  It's okay to tell your husband that you are tired and can't cook.  It's okay to take it easy.  It's okay not to be in touch with everyone every day.  They will understand.  Take care of you so that you can be there for the girls. 

Most of all, understand the importance of positive thinking.  Miracles happen every day.  If you look hard enough, you can find the good in everything.  When Kenna was diagnosed with NEC, I decided that, on the bright side, I could now work on building up my milk storage.  When I brought clothes she couldn't wear yet, I looked at it as less laundry.  And when there was no progress, I rejoiced that she was stable.  There is always a silver lining. 

I'm sure I have way more advice to impart, but it will all come in time.  Just know that you are surrounded by many caring people.  Let them take care of you and your girls.

Dreamers apologize...

I'm sorry that I haven't been writing as much.  I'm sorry that I haven't been doing well with keeping you informed and in the loop. 

To say that we have been busy is a gross understatement. 

We have about torn the house apart over the past month.  There is an order to all remodeling projects.  And what started as a simple plan of replacing the ancient carpeting in the house with hardwoods so that Kenna could breathe became so much more.  The ceiling in the bedroom had to be scraped first.  The walls had to be painted.  It forced us to finally commit and finish the great room.  It made is finally paint the hall and change out that light.  It forced us to finally turn our master bedroom into the oasis we needed.

I've been busy reconnecting with Rachel.  In so many ways, we are back where we were before with the constant communication and sharing.  There are still some wounds that need to heal, but this is a very promising start.

And I've been busy with court.  It's a long story.  Let's just say that our gentleman's agreement only works if both parties adhere to it.  I'm a lady.  I've kept my word.  And my ex...well, he is no gentleman. 

Bishop has been a challenge as of late.  The floors are a bit much for him.  He acts like Bambi on ice.  And he's been sick.  The seasonal allergies are killing him.

What little free time I have goes to cleaning and gardening and time with Kenna...because Sam has given me the house of my dreams, so I need to take care of it.  He's given me the gardens of my dreams (herb and vegetable) so I have to maintain them.  And we all know that Kenna is what happens when two dreamers fall in love.  She's had a bit of a rough spell, but I just go and love her through it.  It's working.

Kenna is in a crib now.  And she's doing so much better breathing.  And if we can just get this feeding thing under control...she'll be practically ready to come home. 

There's this magical place we've heard about...the Special Care Nursery.  It's where babies go to grow and feed before coming home.  It's the last stop in the hospital.  And we're working on getting there.  It's close.  I can feel it.

And while we work toward all this...my apologies for not being better at posting.  Of course you can follow our progress daily on Facebook. 

Dreamers know sometimes wishes are horses

You know the saying.

If wishes were horses, then beggars would ride.

Well, this dreamer is riding.

Exactly six months ago, Rachel moved out.  It wasn't a nice move.  It wasn't an easy move.

I was pregnant and having her leave so abruptly on such bad terms to go live with her boyfriend really hurt my feelings.  And I didn't know how our relationship would ever recover.  There were plenty more hurts along the way.  She ignored my Thanksgiving calls and texts.  She wasn't in touch for Christmas while I was on bed rest.  She ignored my congrats over her graduation and we weren't invited.  And she never contacted me when I had Kenna.

I often wondered how we could ever repair that damage.  The truth is...love finds a way.

I heard she was having some problems and I did what mothers do.  I reached out.  I knew that stubborn teenage pride would prevent her from contacting me.  And so I contacted her.  A door that was once closed, locked, and nailed shut...opened.

We have been talking daily since by text and on the phone.  The closeness we always shared didn't die.  It didn't even fade.  It's more patina now.

We're making plans to all get together, to mend broken bonds between Rachel and step-Sam.  He took this just as hard as I did.  He and Rachel had a great relationship...the closeness I had always hoped she'd have with her own father.  They talked and joked around.  He took her job hunting, helped her return applications and brought her to interviews.  He would pick her up from school and bring her to the doctor.  He was the best extension of me.  And together, they would do really sweet things for me...like make dinner, plan surprise parties, and buy me presents.

I've missed our family.  Sure, Keenan has been more outgoing without Rachel around.  At the same time, I need all my children with me.  To say that I'm thrilled to have her in our life again would be a gross understatement.  We're all going to benefit from this.  Rachel needs her mom.  She even needs step-Sam.  Kenna, she will have a big sister and a big brother.  And Keenan won't be stuck in the middle...not that he ever seems impacted by tension.

This dreamer is riding high and riding happy.  Life is good.

Dreamers know that questions lead to answers

It's been a crazy couple of days for Kenna.

She hasn't had anything to eat since Monday afternoon.  And according to our nurses, she won't have anything to eat until at least Friday.  She has to get rid of all of the dye from the last test yesterday so that they can do an upper GI test. 

Rumor has it, she was really good.  And apparently she has been more mellow, but not in the concerning way.  The doctor was quick to assure me that she was still our little spit fire.  And I like that.

So for now, we have more questions than answers, but I have to believe that the answers will come.

There is a good chance that there is simply a blockage somewhere.  Or maybe there is some scarring from the NEC.  There has to be a reason why our baby, who used to eat like a champ and never had residuals, now doesn't digest an entire meal. 

And we need to figure it out soon.  My freezer runneth over.

Yeah, I know.  We haven't talked about my milk supply in such a long time.  I figured you kind of missed it.  All I can say is...our freezer is full.  I have virtually no solid food in it.  Thank goodness Dad and Vicki had a freezer for us.  I don't know what we'd be doing otherwise.  And to think Sam was worried we had purchased it for nothing.  Ha!

So, I'm waiting for Sam to go and visit Kenna today.  It will be a later visit.  And I'm good with that.  It gives me time to get more writing done.  I have been slacking lately.  I've just been having a difficult time concentrating on anything productive.  I've been mostly killing time until I can see Kenna.  And I know it's bothering Sam.  He's focused on work and taking care of our family.  And I focus on taking care of our family and getting Kenna well.  There's a good overlap there.

We'll get through this.  Soon we'll have the answers we need.  Kenna will get better.  And she'll come home.  Not soon enough, but for good.  And that is the happy thought I hold on to.
 

Dreamers have faith

That's what today is all about.

Kenna has been having trouble with her feedings.  And she never had trouble with feeding before the NEC. 

It's troubling.

As I write, she is NPO.  In layman's terms, she can't eat anything.  And she hasn't been able to eat anything since yesterday evening. 

I was there just after her five o'clock feeding to hold her.  We do that every day.  And so I went and snuggled my baby.  It's a super special time.  I cherish every moment of it.  I was feeling guilty for a while.  I was the only one in the pod who was able to hold her child.  And I knew the other parents would look at me longingly.  Finally, all the other babies are big enough, stable enough to get held.  And I looked around the pod at all of us moms holding our babies and just beaming.  It was perfect.

What wasn't perfect was listening to the doctor tell me that they had run a bunch of tests on Kenna.  I will admit I held my breath for a moment as I waited for the results.  I knew Kenna looked good, but sometimes that means that she needs a transfusion.  Only this time, all the test looked good.  There is no sign of infection.

Still, they are doing gut rest.  And my nurse, one of my primaries, the same one who caught the NEC, has asked that they do a GI study.  She knows Kenna.  She knows my baby loves to eat.  And so we hope that the results will give us an idea, assuming that they agree to do this.

So, we wait. Only I'm not really worried.  Kenna is tough.  The doctors and nurses are observant and talented and so dedicated to a positive outcome.  And we have so many people thinking good things and praying prayers of strength and healing.  What do I have to worry about? 

Yeah, I can't think of anything either.  I'll just keep everyone aware of what's going on.  I'll just keep on loving Kenna through it.  And I'll just keep believing that this is just another speed bump along her long journey home.

Kenna's Necklace from LightShine Designs

So yesterday was Easter and today is Kenna's three month birthday.  She's a big three month old girl today.  Yay, Kenna!

And we are all about making memories.  So, we made sure we spent some time at the hospital with our girl.  It's super important.  I'm not just sitting around at the hospital during that time, even though I am.  What I'm really doing is helping my baby heal.  She breathes better from snuggling on my chest and hearing me breathe, hearing my heart beat.  She is easier going and relaxes more.  (When I heard that, I had to double check and make sure that she wasn't sick.  Kenna is usually pretty feisty.)

The big thing is that she not come unglued all the time.  She can't gain weight that way.  She has to be calm.  And those words do not usually describe my baby girl.

So, I was sitting on the couch in the garage trying to get some work done the other day when Sam brought me the mail.  And I was super excited when I saw the package from my friend Rebecca, owner of LightShine Designs.  She makes custom jewelry.  Most recently, she made me custom jewelry.  Rebecca contacted me and asked about making a piece for Kenna.  She asked me for some ideas, and when I opened the package, I realized how perfect it was, how well she had listened. 

The custom necklace has a 'K' for Kenna and a purple crystal butterfly because that's what I'm doing her bedding in...purple butterflies.  It is perfect.  And I couldn't wait to wear it for the first time on Easter Sunday.

I held Kenna and told her the story of the necklace.  I told her that one day it would be hers.  She seemed to like that.  She slept with her hand wrapped around the chain.  And I'm sure as she gets older and more aware she will admire the butterfly and know that the 'K' is for Kenna. 

If you want a magical piece that is custom made, contact Rebecca.  She has a ton of pictures of the jewelry she has made on her LightShine Designs fan page.  And the pieces that she has up for sale can be found on her Etsy page.  I love her wire wrapped stone necklaces.  I plan on dropping many hints to Sam.  I mean, Mother's Day is coming. 

All I know is how much I appreciate this piece.  It's hard to find affordable custom made jewelry.  And it is so special to have something so meaningful.  Thank you, Rebecca!

Dreamers have heartfelt realizations

Meredith put the CPAP hat Linae made on Kenna's March of Dimes bunny.

I used to feel like I didn't know Kenna at all.  I was kind of hurt that her nurses knew her better.  Meredith had seen her sucking her thumb.  And I hadn't.  Caroline had such a sweet little nickname for her.  Kenna's their little bird.  Samantha started her Beads of Courage.  Ginger passed out her footprints to the nurses.  Linae dressed up her CPAP hat with a bow.  And that's only a few examples from part of the team that cares for Kenna. 

In some ways, I suppose I felt left out. 

I would go and talk to her.  I would sometimes touch her through her womb room portholes.  It was super important that we go at times that we could participate in her care. 

Sometimes the nurses would ask me questions about Kenna.  And I wouldn't know the answers.  I felt like she was more theirs than ours.

Over the last few weeks, that feeling has changed.  It was so gradual that I barely noticed.  Until about 2am.  Yeah, I have a habit of falling asleep watching television.  Normally that means that we're in the living room and I'm asleep in Sam's lap until wakes me up to go to bed.  Lately, it has meant our bedroom because the living room and the rest of the house have been a construction zone.  I have been waking up to the television still on in our room at 2am, then calling the hospital to check on Kenna.

She's almost three months old.  Three months.  One fourth of the first year of her life and she's spent it in the hospital.  That makes me sad.  And yet I know that is where she needs to be.

Last night, as I lay there, I realized how well I know my daughter.  I know her moods, when she's coming completely unglued.  I know how to soothe her...and it usually involves my voice and my touch as opposed to a pacifier.  I know her little fingers and toes.  (I love baby fingers and toes.) 

The other day, I just stood there playing with her stinky feet and she let me.  She watched me do it.  She discovered that Mommy can touch her feet and not hurt her.  She is used to feet touching resulting in a blood draw from her heel for her blood gases.  Instead, I touched her toes and told her all about the fun we would have playing 'This Little Piggy.' 

One of her doctors caught me in the hall yesterday.  She commented that Kenna looked amazing and she was convinced that she was going to make it.

me: You're convinced?  We've been convinced.  We just wonder when she will come home.

doctor: Well, that will still be a while.  Thank goodness you're normal.

Now, I've been called a lot of things in my life, normal is not one of them.  And I might have even been a bit insulted.

me: Normal?

doctor: Yes, you know...enjoyable to have around.

me: Oh.  Good.  Well, please don't let that influence your discharge decisions.  I'll bring her back for visits.  I promise.

Yes.  We're normal.  We're getting to do normal things, like getting to know our baby.  I know the wrinkles in her neck.  I know where the hair line stops on her fuzzy little head.  I know she soothes to the sound of my voice and my gentle restraint.  And I know one day, she'll come home.

Dreamers need to keep their heads out of the clouds

Yeah, that's where I went wrong yesterday.  I thought about it.  And that is most decidedly where I went wrong.  I won't make that mistake again today.  Nope.  I'm on top of things.

See, my day started out super stellar.  (This would be the time my day actually started, as opposed to the middle of the night when I woke up to Bishop peeing on the carpet in the room.)  So, I was working on the laptop in the garage, since the house was taken over by flooring installation, and one of the flooring installers came over to me and handed me FOUR four leaf clovers that he found in the yard. 

I guess from that moment on I felt like I was coated in Teflon.  Everything would just bounce off me.  I was indestructible.  Right.

It was a few hours later that I was rushing to the hospital to see my baby girl.  I had to bring her milk.  And there was a lot going on.  Our window order had been suddenly delivered.  And Sam needed my help.  And I was distracted by my need to get to my pumping supplies, but my inability to do so because the house was in complete and utter chaos. 

Sam had left.  He was gone.  And I knew he was coming back, but I had no idea he would be back so quickly.  All I knew was that I needed to get going or miss time with Kenna.  So, I hopped in the car and backed out and nearly crushed Sam. 

All I saw behind me was the garbage truck.  Somehow, he had managed to pull in beside me, open his doors, and lean in to get a nail gun for the guys.  And I nailed his door, thereby nailing him. 

me: Are you okay?

Sam: I've been better.

He saw the look on my face.

Sam: I've been worse.  I'm fine!

And he headed back out.  I drove off to the hospital.  When I was just ten minutes away, after driving for a good twenty minutes, I realized in all the drama, I had forgotten the milk.  So, I had to turn around and drive back home.  I called to let our nurse know what was going on and she let me know what was going on with Kenna.

Our baby girl has stage 3 Retinopathy of Prematurity.  And she may need surgery.  In less than a week.

Stupid four leaf clovers. 

So, it's been crazy around here.  There has been huge progress on the house.  Sam is fine.  And he was never angry with me.  He was more bothered by the fact that I was upset.  He's a good husband and promises to be an amazing daddy.  I have spoken with Kenna's doctors and they aren't worried about the anesthesia, but the intubation.  She was doing so well on CPAP.  Either way, it will all work out.

I am so blessed. 

Dreamers stay ridiculously busy

Our floors in progress...

I guess it was about 2pm Monday that Sam called me at home, just as I was headed to the hospital.  And when I am at the hospital or on the way to the hospital...I don't really hear anything.  I am super focused on Kenna. 

Then I arrived home that night and realized that I was supposed to help move furniture after making and cleaning up from dinner.  That...was not my favorite night.  By the time we settled in it was after nine.  And after watching a few shows, our night was over.

Tuesday morning came entirely too quickly.  And waking up to Bishop peeing in our bedroom was not the way I planned to start my day.  Yes, Bishop is on meds after his trip to the vet.  Of course the dog is on steroids, too.  Yes, the biggest and smallest family members are rocking the 'roids.  So, he is prone to pee.  This I understand.  What I don't understand is why he didn't let us know he needed to pee.  And I also don't know why I am always on bodily function clean up. 

Being a mom is not the most glorious role I've ever had.

And then there are these moments...moments I would trade for anything.  Moments like...holding Kenna.  I rushed from the house after helping move more of our stuff.  You never realize how much stuff you have until you move or have to remove it from it's location.  Yeah.  We have plenty of stuff.

The drive to the hospital was lovely.  No traffic.  And I made it to the hospital with time to spare.  Soon enough, I was snuggling Kenna.  She does so well just laying there in my arms or up against my chest.  She just relaxes.  She lets me touch her hands and often squeezes back.  Her breathing is better.  Her sats are better.  She is calmer.  It's just the ideal situation for her...mommy-Kenna snuggle time.

We had a big meeting with one of our distributors yesterday and all the big wigs.  It was interesting.  People are never how you expect them to be.  And meetings never go precisely as planned.  I know this.  I set my expectations low and prepare for anything.  In all honesty, it went pretty much exactly how I expected.  It was Sam who was surprised and disappointed. 

Then it was an early bedtime because...we have no living room.  And there was nothing we needed to do...really.

Sam: We should spend more time in here.  We have a really nice bedroom.

me: I used to shut down the house after dinner and hang out with the kids in my room.  I love hanging out in the master bedroom.

Sam: You could have done that here.

Yeah, I could have, but if I did we wouldn't be where we are today.  We needed to bond.  He needed to learn how to share his life.  He needed to figure out how to be with someone.  And I had just about enough patience to teach him.  And I needed to get used to being with someone, too.  Marriage doesn't always mean togetherness.

So, we've been busy.  All indications are that we will be staying busy the rest of the week.  I just can't wait to get to the hospital for snuggle time.

Dreamers know good things grow

We have been busy around the house lately.  And it is so nice to start seeing the fruits of our labors.

Take the master bedroom, for example.  I am in love with the paint.  I love it.  And to think we picked right the first time.  Because that is so not our style.  The great room took forever.  Yup.  And I'm not even in love with the results.  I like the room...but not in the same way I love love love the master.

We went with a green...Irish Paddock.  Of course.  I knew I could convince my Irish man to go with a green that color, since I couldn't get the color I really wanted: Green Water.  He said it was too blue.  He hates blue in the bedroom because my old house had a blue bedroom.  There's nothing getting by him.

Ah, but what really makes the room...aside from the newly scraped ceiling...the taupe suede wall.  It's an easy paint treatment.  And it makes the room.  It's the perfect accent wall.

So, when it came time to paint the hall, since it needs to be done before the floors...I went with the same green.  And the way that new light shines on it...perfection.

What does this mean?

No more painting.  Thankfully.  Because not only do I not enjoy painting, but I rather suck at it.  Really.

Thus it's on to new projects.  We have our new windows coming in.  And the Hardie is on order.  This house will be practically new by the time Kenna comes home.  We're doing everything we can to make it energy efficient and lung friendly.

Kenna's lungs are really having a rough time.  I look forward to the day when she is healed, but the doctors and nurses tell us it could take a good year or more.  And we're already having to tell friends that they can't hold Kenna.  She has no immune system.  The doctors and nurses have warned us no one should hold her, other than her parents.   I'll do what it takes to make sure that she's healthy.  Kenna's health comes first.

And I guess that's one of the reasons I wanted to grow a garden this year.  I figured I could make baby food from all the fresh vegetables.  It's a start.  And so I'm super proud that they have started growing.

I'm working my butt off now so that when Kenna comes home, I can focus on being a mom and taking care of her.  The business should only take a few hours of my day.  That leaves plenty of snuggle time.  And that baby girl deserves all the snuggles she can get after her rough start.  We can't wait to make it up to her.