The Miracle of Ordinary Days - Part 12

Waiting for Abby to be ready to go home was hard for us.  We had been through three months and three weeks of the NICU and were ready to take Abby home.  She had miraculously jumped every hurdle placed before her.  Now there was only one thing left that was keeping her from coming home and that was being able to eat all of her food by herself.

 It had been a frustrating process.  We loved her and felt she would do better when she came home.  We tried everything we could think of including staying over night so that I could feed her on demand.  She was still so small and unable to eat enough to gain weight by herself.  It was very discouraging. We had hoped many times to be able to bring her home but we really wanted to bring her home first by my birthday, April 17th and then by April 20th, Easter Sunday.  We bought her an Easter dress and dressed her up in it that day.  Preemie clothes were still huge on her but the dress looked beautiful.  It signaled good things to come.  She also achieved another amazing milestone.  That day she officially weighed in at 5 pounds! 

Easter Sunday in her pretty Easter dress.  Five whole pounds!  :)

Going home with an NG tube would not be possible.  The proper insertion of the tube is critical to a baby's well-being and there are great risks to inserting it incorrectly including perforation in her esophagus or stomach and the aspiration of milk into the lungs that could cause pneumonia and death.  We were approaching four months in the hospital and a conference was called to discuss the options that we had.  We all agreed that Abby would do better at home.  Their proposal was to surgically insert a g-tube into her stomach to help give her feedings and have her monitored by a dietitian and a home health nurse.  The other option was to wait to bring her home when she could take all of her feedings by mouth which could be days, months, years away. 

Surgery was a difficult prospect for us.  You never want to willingly let a doctor cut into your child.  We saw that Abby was stuck where she was until she could overcome this obstacle.  The best feeding she had ever done by bottle was 2 ounces of food.  Some days she couldn't even do one ounce by bottle. We were never sure how much milk she was getting by breastfeeding.  She could not gain weight with such a small amount of food.  The only way to determine it was by weighing her before and after feeding which was also tedious.  They gave us time to but we were supposed to make a decision.  We were fortunate to talk with our friend Laura who is a very experienced nurse.  Her advice was unequivocal.  "Do the surgery and get that baby home where she belongs."  After talking with her we realized it was what we must do. We told them that night and they scheduled the surgery for the following morning.  With any luck Abby would be able to go home the day after surgery.

Abby's g-tube.  We kept gauze around it because it tended to leak.  I know it is kind of gross but it kept her alive! 

Milk going into the tube.  Again, kind of gross but it kept her alive and growing!

We met Dr. James Fischer the following morning and immediately felt comfortable with him doing Abby's surgery.  He was just awesome, really caring and attentive to our questions and concerns.  He talked to us about the risks and benefits and they took Abby back for surgery.  Sending her off was hard but we knew she was in good hands.  The surgery was a simple procedure and it went very well.  Abby was sedated and put on the vent for the procedure.  She had some trouble coming off of the vent and waking up but once she did we were shown how to use the new tube in her stomach.  It was quite amazing and a little disturbing to have a hole directly leading to her tiny stomach.  It had a plug similar to that on a blow up beach ball that you pulled out to add the food into. We could insert a tube into this tube in her stomach and feed her without every having to touch her mouth.  We would do as much of her feeding by mouth as she would eat and then give her the rest of her food through the tube.

That night we stayed at the hospital to "room-in" with Abby.  It is the standard procedure for babies going home the next day and we were excited!  Excited doesn't even begin to cover it. Ecstatic!  Finally we would bring Abby home and she would not have to be in the NICU anymore!  Life would get back to normal and we could enjoy being a family alone for the first time.  I was emotional that night, getting to hold and rock Abby and be with her as long as I wanted to.  We took turns holding her and both woke up with her when she cried.  The night went pretty smoothly except that Abby was crankier than we had ever seen her.  It wasn't her normal behavior.  She was normally really calm and I worried that her surgery incisions were hurting her.  Regardless of the crying, that night together was the promise of many nights to come and we couldn't wait to take her home. 

Unfortunately, there was one more unpleasant surprise in store for us all...