(Bristol)

I am a logical person who appreciates facts.

FACT: I did everything within my power to have a healthy and safe pregnancy.
FACT: Preeclampsia was not my fault and not even doctors know what causes it.
FACT: Some things are just beyond my control.

And yet, I cannot even express in words the amount of guilt that I carry for getting preeclampsia and being forced to deliver my twin girls at 28 weeks.  To compound the situation, my youngest girl, Bristol, suffers day in and day out as doctors struggle to find a way to heal her sick, undeveloped lungs.  She had a collapsed lung from a pneumothorax about 48 hours after birth, has been on both a jet ventilator and a conventional ventilator ever since.  Despite treatments of surfactant, steroids, and numerous vaso- and broncho-dilators, her overall lung condition has worsened, and doctors now say she has pulmonary interstitial emphysema and chronic lung disease.  As if that isn’t enough, she has contracted a couple of infections – one in her lungs and one in her blood – so they are giving her two antibiotics.  Because she is a fighter and often very restless, doctors also pump her with several sedatives, including morphine.  She is listed as “severely critical” and “unstable”, and her life journey so far has been a roller coaster with a few highs and a lot of very low lows.  When I look at her, my mind races with a million “what ifs”:

“What if I had never gotten preeclampsia?”
“What if I had made it just a few more weeks?”
“What if I had rested more during my second trimester?”
“What if I had eaten better or taken more vitamins?”
And the list goes on….

I even feel guilt for celebrating the successes of my oldest girl, Bella, who has (thankfully) not had any major issues thus far.  She has been breathing on her own and has only a nasal cannula (the same little tube you or I would get if we were in the hospital), which merely provides supplemental oxygen to remind her little preemie brain to breathe.  She has been on feedings of my breast milk through a tube since Day One, was off of TPN (IV supplementation) within about two weeks, and is now practicing latching on for actual breastfeeding.  This week, she began regulating her body temperature much better, so they removed her temperature probe and have allowed her to begin wearing clothes and swaddling in sleepsacks.  These are all things to celebrate…..but I feel guilty celebrating and feeling excitement when I have a sick child who is hanging onto life by a thread.

And at the end of the day, I feel guilty when I become exhausted and want to go home to sleep in my bed.  My girls – and especially Bristol – are fighting for their lives 24/7, so who am I to say I am tired?  But there are days when I just want to stay home and catch up on my sleep.  In addition to the emotional roller coaster we endure as parents of preemie babies in NICU, I am pumping my milk every 3 hours – which means that I haven’t had a full night’s sleep of 7-9 hours straight since before I went into the hospital.  My house is in disarray, I am behind on thank you notes for all of the generosity that has been extended to us, I need to run errands like grocery shopping, I need to take care of some paperwork and such for the girls and I – just a million things that are piling up.  I feel like I just need one day to myself to sleep and take care of all of that – but I can’t bear to miss a day with my girls, and I would feel guilty if I even tried.

As I struggle with my guilt day in and day out, I can’t help but wonder, “Is this just all part of being a good mom?”

 (Bella)