The Miracle of Ordinary Days - Part 8

Seeing Abby for the first time was a mixture of emotion for me.  Our parents had left the hospital so that I could rest and I did that.  I also had to get up to walk before I could go and see her.  That was a unique experience.  I had never had surgery at that point in my life and was amazed how difficult it was to stand up completely.  I did it with the help of Aaron and my nurse but I knew I had to so I did.  Aaron and I were able to see Abby that evening.  I was still just hours out of surgery so they used the wheelchair to transport me from my room and I was able to hold on to Aaron so that I could stand at her bedside.

Abby's first picture right after birth.  She is not wearing a diaper.

I remember being in awe of her tiny size.  When she was weighed it was found that she was actually just 18 ounces (1 pound 2 ounces, 544 grams) and 11 3/4 inches long.  She was our baby and we instantly loved her but there were a few things about her that took some getting used to. Her skin was very thin and the skin is very red and sensitive to touch and prone to infection.  Her head was tiny and there all sorts of wires attached to her abdomen from the monitors. 
She was so tiny that there was no fat in her body.  She had no butt cheeks but was flat in that area of the body.  I could barely see her face because she was jaundiced and had a shield covering her eyes to protect them from the bilirubin light.  She was intubated (had a tube down her throat that helped her breathe) so much of the area around her mouth was covered with the tape to keep that in place.  She had an umbilical line which was being used to feed her nutrients and give her blood transfusions.  This is an IV line that went directly into the bellybutton where she had been connected to the umbilical chord. 
Because of the situation inside my uterus she was very anemic and needed to replenish her blood supply.  From the best of my memory it took three blood transfusions over the course of the next few days to help with that.  I could see her legs and arms well and they made me happy. Her legs were the exact shape of Aaron's long legs in miniature. She also had these brilliantly long fingers and perfect little ears that folded over easily.  We took extra care with them for they had not yet developed the cartilage to make them lift off of her head.  She was also covered in fine blonde hair and had hair on her head that was strawberry blonde.  When I saw her there for the first time I was not allowed to touch her with my bare hands and I don't think I touched her even with gloves.  Before entering the NICU everyone washes their hands and dons a robe to cover their regular clothes.  We would not be allowed to touch her without gloves until she was over 1,000 grams because any little infection could turn into a huge, possibly life threatening problem.

Abby at 1 day old

I asked if I could see her eyes and the nurse turned off the bilirubin light so that she could take off the eye shield.  Seeing her eyes for the first time was an emotional and spiritual experience for me.  Her eyes were a dark cloudy blue.  She was so small that I knew that she was not aware of me but I talked to her anyway. I saw in her eyes, my little daughter, the friend I had been talking to all of those months.  I loved that little girl so much. 

I saw Aaron look at her in wonder and knew that he was feeling the same things, too.  She looked tired as the ventilator forced her lungs to stay open and breathe.  Babies this small have a difficult time keeping their lungs open and are prone to collapsed lungs.  Their tiny lungs are so small and they have a sticky substance in them that make the lung want to stick together with each breath.  Scientists working with the March of Dimes developed a surfactant that aid the lungs by allowing them not to stick together and stay open.  This miraculous substance allowed Abby to breathe.  (Can you see why we walk for them every year?)

Although we had prepared as much as we could before her delivery by doing the steroid injections for her lungs, she was still so small and her lungs so tiny that she was put on a special ventilator.  It was one that was more gentle than the standard one that make the lungs breath in and out.  This kind of ventilator kept the lung partially open all the time so that it would be easier for her to breath.  I still can't imagine what that must have been like for her.  I am grateful that she has no memory of that time.  I am sure it would have been a painful and difficult one.

There were difficult feelings to deal with for me at this time.  Being the parent and particularly a mother of a micro-preemie is hard, there is no way around it.  I felt very grateful that Abby was alive, that she was doing well for her size and condition but I was also dealing with a lot of negative emotions.  Anger, sadness, fear were among them. 

I was heartbroken that she was in this situation and there was nothing for my mothering side to do but wait until care time to be her mom.  I felt a deep sense of guilt for having put her there.  I knew I had not done anything to make this situation happen but I felt like I was responsible and I felt terrible.  In talking with other moms who have been through this, I know I am not alone.  It's frustrating because you also feel like you shouldn't be having those feelings.  It becomes a cycle that is hard to deal with. 

I think moms tend to put much of what happens to our children on ourselves.  I've heard many call it "mom guilt".  I think it must be a little bit similar to a child born with a genetic defect or deformity.  It is a chance of nature that such things take place and not within our control.  I knew that logically but I couldn't help but feel that responsibility just the same.  Even after all these years of being Abby's mom, I still have moments of "mom guilt".  I'm sure all of you moms out there can relate to that.  

The odd thing about this time to me was how normally we acted under the circumstances.  I think we both had received enough calm assurances by the Spirit that we were comfortable with the situation.  Looking back at the pictures of us with Abby in the days after her birth I really am amazed that we were so confident and calm about it. We had time to prepare ourselves for her arrival and I think that aided us in adjusting our expectations. 

I've often been grateful that Abby was our first child.  I can only imagine what it would be like to be an experienced mother with previous birth experience coming into the NICU.  For the health of the babies there are many restrictions put on the parents and visitors.  The only people allowed to visit Abby would be Aaron and I and our parents.  No other family would be allowed back to see her.  There are also restrictions on the amount of time that anyone can spend with their babies and only two people are allowed in at a time.  Because of Abby's small size we did not object to this but I can imagine for some parents with babies that are larger and less fragile that the NICU feels like a prison of sorts.  

Abby at a few days old.  Close-up of umbilical line, breathing tube, NG tube and IV.

There were care times every three to four hours depending on Abby's needs.  Other than this short time we could not be in the room with her.  The best thing for a baby so small is sleep in a quiet environment.  The NICU isn't very quiet sometimes with all the monitors going off but they do their best to keep it serene.  The care times were my only time with her so I treasured those few minutes with her. 

Care times were set aside to do a few things and there were quite a few things that we could help with.  In every care time we would take her temperature, change her diaper, and change the oximeter probe from one foot to another.  This probe is to measure the oxygen in the blood and taking it off made the alarm on the monitor sound.  We quickly learned the alarm going off was usually not an indication of a problem, it was usually the result of a kicking foot or a movement by the baby.  The monitors were very sensitive and sometimes a little annoying when you wanted things to be quiet. There were times when the alarms were real.  Seeing her numbers drop was stressful.  Her heart rate would decelerate quickly and then come back up again.  We got used to these quickly.  It is very common for premature babies to have this happen.  She was thankfully in stable condition most of the time. 

There are a few potential immediate life threatening problems for babies in Abby's situation and the doctors and nurses kept us informed about potential complications.  We were told that the first few days would be the most critical.  Some of the problems that they mentioned were bleeding in the brain, infections, and heart problems.  Abby had many underlying problems that were already being treated, anemia, jaundice, and respiratory distress syndrome.  Her blood was checked daily, she also received scans of her brain frequently to check for bleeds, she was weighed and measured every night at the same time to monitor her progress. Our medical team was amazing.  They were excellent at answering our questions and I asked many of them.  It was very reassuring to have them all there. 

We were able to visit Abby at every care time when I was in the hospital but the day came when it was time for me to be discharged.  I was feeling in good health but very tired from the surgery and I had mixed emotions about going home.  We were able to see Abby before I was discharged and I knew that I would be back in a few hours to be there for care time but leaving my baby in the hospital is one of the hardest things I have ever had to do.  I knew she was in excellent hands and that she was being well taken care of but I ached for her.  I remember just sobbing as we pulled down the ramp out of the parking garage.  Aaron and I didn't say much, we listened to some of our favorite music and held hands and drove silently home without our baby.  We would have many days like that in the following months.  We rejoiced in her progress and were grateful that she was with us but our trials with her had only just begun.