How To Endure The NICU

In a previous post I had mentioned what we went through with our daughter’s delivery.  The most difficult part about all of that was that I still do not remember hearing her first cry.  Fifteen months later, we decided to do things differently.

 “Accepting that anything can happen made for a much better experience.”

My original “plan” was to deliver him naturally, and the doctors let me go the entire pregnancy thinking that I was going to.  At 35 weeks, I was diagnosed with HELLP sydrome.  HELLP is basically preeclampsia on crack.  Hemolysis, elevated liver enzymes, and low platelets make up this lovely diagnosis.  I went for a checkup, and everything was fine until I got the call that evening.  My platelets dropped to 88, and they had to get the baby out.  In addition to HELLP, I also have Factor 5 Leiden, which is a genetic abnormality that puts me at risk for clots.  I also have a rare disease called LCAT Deficiency which causes renal insufficiency and eventually failure. All of these factors prompted a delivery for the lives of those involved.

I was scheduled for a c-section at 37 weeks if I didn’t go into natural labor, due to the fact that my daughter had low birth weight at 37 weeks. The call was made that they needed to save my life and the baby’s.  I was hysterical.  Thirty-seven weeks I can handle, but 35,  is a preemie. I was so afraid I did not know what to do with myself.  I prepared for the worst, hoped for the best.  I wrote in my 14 month old’s journal that I had been keeping for her since her birth, I told her I loved her, and I said my goodbyes.

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The trip to the hospital was the longest car ride I have ever experienced. However, within a few hours, I was feeling very confident and cared for, as I finally felt like I was in the right place. I had already toured the hospital, the NICU, the O.R. and met the anesthesia team, so I knew what and who I was dealing with.  I didn’t know that there are specialized anesthetists for labor and delivery.  That little factoid makes for a more confident about-to-be-mom when that giant needle is going into her spine the correct way.  Thank goodness for that.

“It’s a BOY!”

We chose to not find out what we were having, and it added joy to the experience despite the gravity of the circumstances.  At 5lbs, our little man did not cry right away.  There is no silence like silence in a delivery room.  Within seconds,  a team of medical professionals huddled over my son in order to get him breathing.  Finally, he did and was whisked away to the NICU, which became our new home for the next four weeks.  He was growing stronger every day even though it took two days for me to even hold him.  I remember feeling so lost because I know I just had a baby, but I was alone in a hospital bed without him.  I was so exhausted from the surgery and blood loss that I could barely hold up my head, so it was probably better that he received round the clock care from the staff.  (This is what I tell myself).

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After four days I was discharged to go home, but my son had to stay.  He was on a CPAP machine to help him breathe, and he was also on a feeding nasogastric tube.  I cried every chance I had.  My daughter stayed with loving family during this process so I would visit with her, and then go home to an empty house.  Hubs had already gone back to work.  I disobeyed doctor’s orders and drove myself to that hospital every single day.  Even with mastitis, and also an infection at my incision, I still remained determined to get to that NICU and help him repair from the damage my body had done to him.  No one understands the emotional impact that being in the NICU and not bringing your baby home has on a family.  It is something that never gets forgotten.

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Advice for Moms in the NICU:

-I journaled everything I went through and everything I felt.  I still write in the journal as a letter to him. One day he will read it and know what his first years were like…the years he has no memory of.  I suggest journaling.

-Get Help: Reach out to friends and family.  If you do not have them, make them.  The nurses and doctors become apart of your family, trust them.

-Allow yourself to emote.  It is a tough thing seeing your child sick. Seeing your newborn hooked up to a million monitors isn’t pleasant.  You will need to feel.

-Get rest when you can.  Try and take advantage of your preemie being taken care of by trained, loving professionals.  Get the most rest that you can get, especially before bringing the baby home with associated monitors and medications.

-Do as much kangaroo care as you can.  I sat with him, skin to skin, all day,every day.  I didn’t care about much else in my life at that time except my son and my daughter.  She was getting me when he wasn’t getting me.

How can friends and family help?

This is such a trying time, so leave all judgement behind you.

-Can you sit in the NICU and keep the parents company at times?

-Can you see to it that the family gets help when they bring the baby home?  Help includes: cleaning, cooking, housework, and running errands.

-Send mom with care packages.  Nursing and producing breast milk when you are away from the baby is quite the challenge.  It is so important for the mom to stay nourished.  Maybe provide her with packed meals that she can eat at the NICU.

-Generally, the fear is that the milk supply dwindles if baby is not nursing.  Help the mom get a hospital grade breast pump.  Most insurances will cover it if the NICU doctors write a presciption or a letter of medical neccesity.

-Try to be a “doer” rather than an asker. Just show up, and be present.  If the mom is separated from the baby can you keep her company in the meantime?

After we brought him home, he slowly got better.  Life for a preemie is a process.  Do not let anyone make you feel like you are wrong for how you handle your preemie.  There’s so much information out there about how delicate they are in their first year.  My son was born in July, so that winter was pretty rough in the northeast.  We pretty much didn’t leave the house.  With preemies comes a temporarily weakend immune system.  As always, trust your gut, your instinct, and your baby.

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