Desperate times call for hopeful measures

Words can't describe the first weeks of Gabriel's life. There is a saying here, "Unless you are a NICU parent, you can't understand." Eventually to be considered the NICU elders, we must have looked like shipwrecked castaways in the beginning - lost, afraid, tired, ragged. Since I had a c-section, I had my own room one floor up for two days. Although they forced me to stay in my own room overnight, I would sneak out in my wheelchair and go down to see Gabriel at every opportunity. Trent stayed with Gabriel all of the time, and after just one day, looked as if he was the one fighting for his life. Even though the NICU rooms were private and spacious with a couch bed, it was impossible to sleep in them due to the bells and whistles, as we now call them.  Three main parameters that are constantly monitored:

Heart rate (Normal between 120-170) - Alarms when he has a "brady" - drop in heart rate that preemies have due to apnea, periodic breathing or "just because".  If his heart rate drops below 120 = green alarm and beeping ensues.  HR below 100 = red flashing lights, loud beeping, and nurses running.  It was like a movie when the a patient codes and all of the doctors come running, but worse because we couldn't do anything to prevent it.  Gabriel had 10-15 "bradys" a day in the beginning, and we never got used to it.  Trent would shoot out of his perch (where he was already staring at the monitor constantly) and talk to Gabriel, "Come on buddy, bring it up, come up..."

Oxygen saturation:  In adults, normal oxygen saturation is 100%.  In preemies, anything from 85-95% is acceptable.  While not enough oxygen can damage his developing brain and other organs and increase his vulnerability for NEC (to be described later), too much oxygen can cause extreme damage to his developing eyes - called retinopathy of prematurity - even to the point of blindness.  O2 sat would (green) alarm from 95-100% and 78-85%.  Red alarm and flashing lights for anything under 78% (call it a "desat").  To further complicate things, bradys can cause desats and desats can cause bradys....So the question becomes, "Which came first, the brady or the desat?"

Respiratory Rate:  This parameter is the least precise, and therefore the least stressful for us.  But, yes, it still beeps.

So, "bradys" and "desats" were termed events, which were methodically tracked by the nurses and then reported in rounds each day.  There was a direct correlation between how sick Gabriel was and how many events he had daily.  In addition to events, we also worried about the following:

Try not to be overwhelmed, but you will be anyway.

Transfusions
Micro-preemies are born with fetal hemoglobin just like term babies.  However, preemies' bone marrow doesn't begin to make red blood cells right away (40 days until their "retic"count begins to go up)  Reticulocytes are immature red blood cells - signifying that the baby is beginning to make red blood cells.  SO, almost 100% of micro-preemies require a blood transfusion.  They told us, "It's not if, it's when."

Billirubin
Because his liver was also immature and couldn't clear dead red blood cells, Gabriel was a scary shade of reddish purple.  Since his "billi" was high, he had to be under a light on and off for the first two weeks.  While he was under the light, he had to have a mask on to protect his eyes, which were still sealed shut....we couldn't wait to see his eyes.

One day, he will get into big trouble for this gesture.  Right now....pretty humorous.

NEC
Necrotizing enterocolitis - One of the scariest possibilities in preemies all the way up until the 35th week.  Its cause is not completely known, but it is primarily a preemie disorder that causes a death of intestinal tissue.  While some cases can be treated with antibiotic therapy, more serious cases require multiple surgeries to excise the affected tissue, possible colostomy or iliostomy and extreme long term effects.  Every nurse was afraid of this for Gabriel.  They checked his stomach for distention, loops, residual feedings, and watched for increased daily events.  Trent and I prayed that this was one obstacle we wouldn't have to face.

PDA

There is a blood vessel called the ductus arteriosus in fetal circulation that diverts blood away from the lungs.  Upon birth, that vessel usually closes, allowing for normal blood flow through the heart and lungs.  In preterm babies, the risk of this ductus arteriosus staying open (or "patent") is higher than in term babies.  Gabriel received indomethacin for his first three days of life prophylactically just in case he had a PDA.  However, this medicine doesn't allow him to have milk, so he needed nutrition from TPN, also adding to his need for a central line (two other issues we were facing).  

Weight loss, feedings, TPN and PICCs 

All babies lose weight in the first days of life.  Since Gabriel was on indomethacin for three days and therefore couldn't feed for those days, he was on IV nutrition (called total parenteral nutrition - TPN).  He had an IV in his left arm from his resuscitation, but they would need additional access to administer medications and TPN, so they attempted to put in a PICC line (peripherally inserted central catheter).  However, Gabriel's veins were both small and fragile.  Since PICC line insertion is a sterile procedure, we weren't able to be in the room during that time.  The waiting was torture.  When they finally came to get us, it wasn't good news.  No PICC line.  He would have to continue to be stuck every time one of his smaller IVs infiltrated, or clotted off.  It was terrible.  They eventually put a line in his umbilical artery (yes, it was hanging out of his umbilical nub), which was a potential source of infection and would only be good for one week.  The following week they tried for a PICC line again.  No go.  At this point, either he would have to get up to full feeds (through an orogastric tube) or he would need surgery to place a central line.  If he went to surgery, he would have to be intubated, an evil that we had avoided up until then.  Miraculously, he tolerated feedings enough to avoid that central line and begin to gain weight. Praise God.

Umbilical artery catheter

Brain bleeds
Brain development is at a very crucial point at 26 weeks, in that there is still a lot left to do.  Many neurons still need to make their connections....so any bleeding in the brain can prohibit those very important processes.  Babies at Gabriel's age usually need to be intubated, and ventilators cause a high pressure in the brain leading to bleeds in many cases.  This can cause grave damage to the developing brain encompassing anything from slow development to severe brain damage.  Thankfully, Gabriel wasn't intubated (yet?). Hope.

When you see an accident on the road, you look at it and think, "Thank God that wasn't me."  Every time I looked at Gabriel, all I could think was, "Let it be me.  Let me take it away.  Let me help."  I wanted to take away his pain at any cost but I couldn't do anything. Except give it to the Lord.  We prayed every waking moment, and so did thousands of others - family, friends, co-workers, long lost acquaintances, absolute strangers. Some who hadn't prayed in years, some who had never prayed.  Desperate times show you what you really believe in, and they force you to have faith.  Trent and I felt helpless, but thanks to the Lord, we were far from hopeless.