The Miracle of Ordinary Days - Part 10

Life in the NICU became a daily routine of care times.  Abby continued to grow.  They inserted an NG tube (nasogastric tube) and began giving her the breast milk starting with 1 cc (ml) of milk.  Anyone who knows measurements can tell you that 1 cc (ml) is a very small amount, about one drop from a dropper.  She tolerated the milk well.  Babies that small can develop problems with their intestines when milk is introduced because their digestive tracks are not fully developed.  The baby we shared our room with had problems with this.  We felt grateful that Abby was free of this problem. 

The biggest issue we faced at this time was the ventilator. The longer the ventilator is needed the more likely there will be long term damage done to the lung tissue causing chronic lung problems.  It became a process of weaning Abby off of the ventilator.  Every day we would get an update of how far they had been able to wean her down.  She was doing some breathing on her own over the top of the ventilator but she still needed it.  Some days she would do really well, other days she would be tired and not do as well.  I looked forward to the day that the ventilator could be removed because it would mean holding her, feeding her and all the things that all moms look forward to doing.  Up until that time the most holding I had done was a brief pick up and set down while helping the nurse change her bed.  Her small size and fragile lungs made holding her with the ventilator attached unwise and possibly dangerous to her.  

On February 16th, they took Abby off the ventilator.  She was 3 weeks old and weighed just 1 pound 15 ounces.  She had a nasal cannula that gave her the oxygen she needed.  It was finally time to hold her.  That night was a great night.  We were told that I could hold her but that too much stimulation might hurt the objective to keep her off the ventilator.  Luckily, I have a very understanding husband who knew that I needed to be the one to hold her. 

The nurse lifted Abby off her bed and set her on my chest close to my skin.  This is called kangaroo care which requires skin to skin contact between mother and baby.  Her little body was so tiny and bony but tears of joy came to my eyes as I held her.  I could feel that her breathing was labored but her oxygen saturation remained steady.  It amazed me what those tiny lungs could do.  What a little fighter!  I think those five minutes or so of having her on my chest healed a lot of the hurt my mother heart had endured for the months before.  Those moments were beautiful and amazing but were not to last long.  She stayed off the ventilator until the following morning and was too tired to continue breathing without support.  Our final days with the vent were not behind us and it was discouraging.  I felt bad that Aaron hadn't had the chance to hold her. 

You can see in these pictures that I am still wearing gloves. She had not yet reached the golden 1000 grams (2.2 lbs).
We look very happy though, don't we?

Something else happy did happen during this time.  On February 19th, Abby reached 2 pounds.  This might not seem like a big deal to anyone else but for us it was huge!  It had taken her a month to do it and we were very excited.  We had a celebration dinner to celebrate.  My parents, my brother Matt and his wife Rachel, my sister Emily and Aaron's parents and sister Chantel were all there.  My cousin Becky and her husband Chris also attended.  Becky was 9 months pregnant with her first child and ready to give birth any moment.  She was having some contractions that night and we had fun watching her belly tighten and release. It was a strange feeling for me because I was supposed to be due a full two months after her.  She good-naturedly teased me about having to beat her to it.  I teased back by saying I was just really competitive like that.  She gave birth to her daughter the next day on February 21st exactly one month after Abby.  It was a happy night.

The ventilator continued to be our problem.  It was a blessing because it was keeping Abby alive but we needed her to be able to get off of it as soon as we possibly could.  There are hard decisions for parents to make in these situations and after almost two weeks of unsuccessfully weaning herself off of the ventilator the doctors came to us to tell us that they thought she needed a boost of steroids to help her get off of the vent for good.  They gave us the statistics once again about possible long term effects the drugs could have on her.  It is hard being a parent when there is no way to know what the outcome will be.  We decided that getting off the vent was crucial to her getting the love we had to give her and also the best for her medically.  They gave her the steroids and took her off of the vent for the last time on the 28th of February, 1 month and one week after her birth.  She would still need supplemental oxygen for a while via the CPAP first and a nasal cannula after that but the vent was gone and we would be able to hold her on a more regular basis.

Abby off the vent in an oxygen hood.  This is the first time we saw her face with no tubes or vent covering it.            What a beauty! 



No more vent!  :)  Hooray!



Abby with her daddy!  Finally!  :)

 Off of the ventilator Abby quickly became more interactive.  She was still not quite like a regular newborn but she was a lot closer.  It is hard to explain how much more connected you feel to a baby you can touch and hold and love.  She was still fragile and small but she was able to do more.  She still was getting her meals by NG tube.  It was time to start nursing and giving her a bottle.  It amazes me now that she would be able to do this but we made our first attempts a few days after the vent left.  She had feeding issues with the bottle but was great with breastfeeding.  Not a normal thing for these little ones.  Normally the bottle is much easier to get the hang of because the milk comes out easily.  Feeding time was also the main time when she would desat (her heartrate would drop).  Her numbers would go down on the monitor and we would have to help her by sitting her up, rubbing her back. We would have to watch her closely as she navigated how to suck, swallow and breath all at the same time.  It is not something that an older baby has to worry about but for a baby still two months from her original due date just the fact that she was able to try was impressive. 

I love the way he looks at her.  Big hands, tiny head.  Sweet!

  The difficult days of the vent were over but there were still many obstacles to overcome before we could take Abby home.  We had been in the NICU for a month and a half and had navigated some pretty treacherous waters.  We hoped for smooth sailing and for good news but our days in the NICU were not over.  There were still more adventures in store for us.