A NICU Baby at Home

We have successfully completed one week of all being at home together.  Like most typical families it has been filled with cuddles and feedings and sleepless nights.

Going from the NICU to being home is an interesting experience.  They don't call it instensive care for nothing.  Now, we're home fending for ourselves.  WE don't have a 24/7 care and advice line.  WE're still adjusting and having a hard time letting go.  In the hospital, they charted everything - diaper weight, feeding quantity, temperature etc.  We may or may not be keeping a similar chart.

Lest you think we've been completely cut off, we're not.  We had an adventurous trip to the pediatricians office.  Everything is a little more difficult with an oxygen tank.  There is also a program that sends a nurse to your house to check in and make sure that Joshua is developing properly.  I am so grateful.

Because Joshua's immune is fragile, we've mostly been hunkering down.  WE are having a lot of fun with our little man.

Coming Home

Yesterday, Joshua came home.  Jerry led the way in the door with the oxygen tank.  I slowly followed
with Joshua.  I knelt down, pulled Joshua out of his car seat, moved him to his bassinet and I cried.  I'm not saying that I got a little misty eyed.  I cried big fat tears.  From then on I cried all day.  I fed Joshua, and I cried.  I bathed him, and I cried.  I ate chocolate-covered acai berries, and I cried.  I scrolled down Facebook, and I cried.  There were a lot of tears.  There still are actually.

I felt the tears coming on all morning.  Because Joshua came home with an oxygen tank we spent Friday night at the hospital and spent the morning milling around waiting to be discharged.  Tears came and went a little, but I was easily distracted by the nurse, nurse practitioner, and dietician who were all trying to make sure we had everything we needed.

   
And after what felt like an eternity, but was really 10 1/2 weeks, we put our little boy in the car and drove him home.

Why did I cry?  I felt elated, and terrified, and happy, and tired, and nervous, and excited, and hopeful all at the same time.  How could my heart contain itself?

The Michelle that was wheeled into the operating room on February 26 is a different Michelle than the one that carried her son out of the NICU on May 10.  I don't feel superior to anything or anyone from before; I feel so changed.

I'm a mom now - a full-fledged, full-time, not just-during-feedings-at-the-hospital  kind of mom now.  My life-long dream has come true, and I'm sitting here just sobbing from joy.    

Almost There

We're getting close to having Joshua come home.  I don't want to say how close because nothing is 100 percent until they are loaded into the car, but we're almost to the end of the marathon.  We've come a long way.

Then

• In the past ten and a half weeks, Joshua has more than tripled his birth weight.
• When they started feeding him, Joshua ate one milliliter every eight hours through a tube.  Now he treats every meal like an all-you-can-eat buffet.
• He lived in a heated, humidified incubator.  Now his fat and some thick blankets keep him warm.
• Up until a week ago, he needed an enema a day.  He's figured out how to keep things moving on his own these days.
• Machines pumped multiple liters of oxygen into him every minute and sometimes took breaths for him.  Now he only needs .01 liters of oxygen a minute. 

He's a whole new little man.

Now

I've spent the last week or so in crazy nesting mode trying to make room for him in our little apartment.  I'm fairly pleased with how his room looks even though we haven't gone decorating crazy.

Gratitude Part II - Family

We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?

Dieter F. Uchtdorf

As promised, I am continuing my gratitude post.  Jerry and I live a fair ways away from most of our family, but both sides have been very involved with this whole thing.  In order to protect people's privacy, I'm not going to name names, so hopefully this won't get too confusing.

I know that those who are long distance have wished they were with us we brought Joshua into the world, but they have helped in many ways.  My sister's lengthy phone conversations with me really helped me while I was in the hospital.  Both of my sisters-in-law had great advice and support as well.  My in-laws have called, shown their concern and sent Joshua some adorable clothes.  Outfits with whales really make me happy.

Last weekend, I had a baby shower and my extended family brought me wonderful gifts.  WE know feel completely ready for this little guy to come home.  

One of my aunts who lives close by offered to drive me to my appointments.  I don't think she knew what she was in for.  When my health started to decline, she waited through lengtly ultrasounds and tests.  She brought me lunch and support.  On the day I was admitted to the hospital, she stayed with me and waited in the hospital while Joshua was delivered.  I'm so exceedingly grateful for all the time she spent with me.  It was exactly what I needed.

I have one sister that lives close by.  She tag teamed with my aunt to make sure I was taken care of in the hospital.  She has helped to feed Joshua when I wasn't there.  The night Joshua was born, she burst into my hospital room with her bubbly personality and gifts for Joshua.  I was mostly feeling sick at the time, but it was the best reminder that I also needed to celebrate.  This is perhaps the most importatnt thing she did for me.

 My mom flew to Utah the day after Joshua was born.  I could write pages and pages about her.  Suffice it to say she did a lot for all of us.  She stuffed me full of liver-friendly foods, got me to the NICU as much as I wanted, cleaned my house and even visted at 5 AM to make sure AI was pumping.  My dad was willing to be alone for about a month while mom took care of all of us. 

My grandparents made it their personal mission to get me to the NICU between my mom leaving and Jerry finishing school.  I will treasure the time we spent together going to and from the hospital.  They have been such good sports especially because they haven't been able to go inside to see the baby.

Lastly, there is of course Jerry.  I'm not really one to gush about my husband online.  The list of things he has done throughout this journey would be excessive.  He manages to get me laughing every night when he gives me a shot.  He relishes his time with Joshua.  He gave up his cot one night in the hospital because I couldn't stand my hospital bed any longer.  When it hurt too much for me to climb in bed, he built a little staircase.  He's protective and kind and fun and I'm so glad I have him through all of this.

Vocabulary

Research has shown that the more words a child knows when entering kindergarten the more easily he or she will pick up reading.  Vocabulary is an important early literacy skill.  Of course, children learn vocabulary by being in language rich environments.  Joshua has spent his days being enriched by more medical vocabulary than a two month old should hear.  The words include but are not limited to:

Hematacrit - blood test to measure red blood cell count
Reflux - Jerry scientifically refers to this as up-chuck
Esophagus - because we can't just say throat
Motility - in reference to the large intestine
Apnea - luckily Joshua hasn't heard this term much lately
Caffeine - as in lots and lots and I"m not referring to myself
Bilirubin - we may or may not have thought it was called Billy Reuben and referred to an individual who disvocered the treatment.
Edema - or we could just say puffy.
Hernia - otherwise known as an outie. 

I also found a helpful website that defines terms.  I wish I had found this 10 weeks ago.

It seems our little man is destined to be a good reader and quite possibly a doctor.

Feeding the Machine

I've been debating about whether or not to chronicle this part of my experience for two reasons.  One, It's rather personal, and two I am NOT seeking advice on the matter.  But in an effort to share what NICU moms experience I have decided to overshare.  If this is too much information for you, feel free to stop reading now.

A few hours after Joshua was born, I was wheeled into a recovery room.  The nurse brought in a breast pump, gave me a two second tutorial, and told me to pump 8-10 times a day.  And so it began.  To date I have pumped over 400 times.

My milk came in after two days.  This was a miracle because I had three things working against me.

• Delivering at 29 weeks
• C-Section
• Magnesium Sulfate (a very uncomfortable, but important treatment)

I plodded along getting moderate amounts of milk for the first week or so.  I did everything recommended to me by the hospital to promote milk production.  This included:

• Pumping every two to three hours
• Pumping at the bedside
• Looking at pictures of Joshua while I pumped
• Drinking a lot of water
• Eating extra calories (happily)
• Taking fenugreek 
• Using hot packs
• Power pumping (pumping off and on every ten minutes for an hour)
• Double pumping (a strategy to preserve breast milk, but still get rest)

Can you see why I am not looking for advice?

I have been faithfully feeding the breast pump for nearly nine weeks.  I've had a few things working against me.

• You don't get the same hormonal connection feeding a machine as you do a baby.  Thus, I am not stimulated to make milk in the same way as a non-NICU mom.
• The NICU is a stressful experience.  The hormone released by stress inhibits breast milk production.
• I had a blood clot and about a million different prescriptions.  (I quadruple checked to make sure they were safe to take.)

And so I have watched my milk supply dwindle.  A month ago, I was distraught about it..  I've felt helpless throughout this whole experience.  Pumping was the one thing that I could do for my precious little boy.  It's been exhausting, time consuming and frustrating.  It's also been unproductive.  The doctors and nurses all praised me for my efforts and expressed their surprise that I even had milk. 

A few days ago, I decided it was time to be done.  After discussing it with the occupational therapist, I've cut the number of times a day that I pump in half.  I will decrease from there.  I feel so relieved.

I want to be clear that I don't consider this giving up.  I want to focus my mothering energy in more useful ways.  This is a choice that has not been easy to make. 

Hopefully, none of my readers out there are feeling the need to be judgmental.  I've discovered that women can be downright cruel to each other about the breast/bottle/formula feeding debate.  Does it need to be a debate?  One women online said that women who formula feed are selfish and ignorant.  Shouldn't we all agree that mothers are capable of making the right choices for their children?

I'm fairly certain that what I get back in emotional stability is going to be more helpful to my little man than two ounces of breast milk a day.    

Happy 2 Month Birthday

Joshua turned 2 months old today.  His special treat was to meet his Uncle Richard.

He also had plenty of quality time with his daddy and I.

The one major draw back to being two months old is the vaccinations.  But I am sure he will bear them with fortitude.  Little Joshua has been through a lot ofter all.