Friday, December 9, 2011

The Miracle of Ordinary Days - Part 14

Home was everything we had hoped for and more.  It was also challenging.  When you bring a baby like Abby home you worry about every little thing.  You sometimes wish for monitors so you can see that she is doing okay.  Luckily, we had purchased a co-sleeper which is a bed that attaches directly to our bed and is level with our sleeping surface so if in the night I became worried about her I could reach over and feel her breathe in and out without disturbing her.  Sometimes while Aaron slept I would watch her in the semi-darkness and see her little face as she slept and my heart would feel joy. 

Abby and I woke up frequently for feedings but the mixture of breast milk and formula sustained her through the night most of the time.  It might sound odd but I actually slept better with Abby home.  Night time was the hardest time for me while she was in the hospital.   Life got into a daily routine of feedings, appointments, and the daily work around the house.  One good thing about all those months in the hospital was that Abby was already on a very consistent schedule.  Any mom will tell you how nice it is when you know when to expect your baby to be hungry. 
Abby's meal being warmed up and Abby isn't happy!  You can see how big the preemie clothes still were on her.

We were assigned a home health nurse and also a dietitian.  The nurse was very helpful but we determined together that the dietitian could monitor her eating because there was a lot of repetitive care.  The nurse commented that she wasn't used to working with parents like us and it made me sad to think of the babies like Abby with moms who were less diligent in their care.  I had seen some of those moms in the NICU.  I was grateful to be able to stay home with Abby and take care of her needs. 

Our dietitian was great.  She came weekly to weigh Abby and take her measurements and talk about how her eating was going.  We also went to the Feeding Clinic up near Sacred Heart to see if they could aid Abby's efforts with the bottle.  She was still not taking her bottles but liked to breastfeed.  She was getting stronger and continued to gain weight.  We worked together to help her grow.  There were times that the issue of breastfeeding became difficult.  I felt that because Abby was more able to do it that we needed to continue doing it no matter how much milk she was actually getting.  I felt that she was getting a good amount of milk and I would always make sure she also did the bottle for a few feedings a day.  It might be hard to believe that a baby can't figure out how to use a bottle correctly but that is what was happening.  It was like the part of her brain that could do that hadn't turned on yet.  

Abby and Daddy snoozing together.  Ahh, the joys of home!
Later that summer we attended the Martin Family reunion for the first time.  It was fun getting to know all of the family and we had a great time showing Abby off.  Up until that point she was still not taking a full feeding by bottle and she was 7 months old.  Can you imagine how long we would have been in the hospital if we had chosen not to do the surgery?  At the reunion it was like a switch turned on in Abby's brain.  I fed her from the bottle and she took the whole feeding by mouth.  I was sitting with Aaron at the time and we were so excited.  We waited for the next feeding and she did it again!  Our baby could eat!  Hooray!  

She still needed the tube sometimes when she was tired but she soon became able to take all of her meals by mouth.  It is amazing how something that is so easy for everyone else had been her biggest obstacle.  The dietitian found that she was growing steadily so she was getting enough from bottle and breast and we no longer needed to use the tube in her tummy and we no longer needed weekly visits from the dietitian.  It was a relief to claim a little bit more time.  In November, we were able to take her in to have the tube removed and she has been eating well and growing steadily ever since.  

The only other issues medically that Abby has had since being discharged from the NICU is a problem with her eyes.  As she developed, her eyes began to cross and wander (amblyopia and strabismus). We patched her eyes to strengthen the muscles in them.  Dr. Christina Nye is her eye doctor and determined that she was in need of eye surgery to adjust the muscles in her eyes and straighten her eyes out. Abby has so far had surgery three times to correct this, one when she was eleven months old, another around two and another when she was five.  After the months in the hospital these outpatient surgeries have felt routine and hardly worth mentioning.  She continues to see Dr. Nye every 4-6 months and has good vision in both of her eyes with glasses.  Both amblyopia and strabismus can happen to all kids and are not necessarily the result of being premature. 
Before eye surgery.  Her eye would wander all around.  It was a wonder she could see! 

Questions from others were sometimes very hard.  It was hard to explain the things that she was going through.  In the early days home visiting the store was sometimes problematic.  People would come up to us and see how tiny she was and ask the standard question, "Wow, she's tiny, how old is she?"  At first I would answer with four months or five months but I found that answering that way led to questions and long conversations with total strangers.  It was nice to tell her story but sometimes when you are in a hurry it can be a little cumbersome.  I would usually answer with her adjusted age if it was someone that I didn't know.  With others that I knew it was good to be able to share her story.

Our first family picture in December 2003.  Abby's eyes are much straighter.  She is wearing a dress that is for 6-9 month old.  She is 11 months old. 

After all this time has passed no one just meeting Abby suspects that any of these events took place.  Sometimes they wonder about her behavior and I do my best to explain these circumstances of her birth and development to them.  There is rarely time to share her whole story and to explain just how amazing she is.  I hope in some way that these words that I have written about her will serve to help others understand Abby better.   These experiences have made her who she is today.  I realize all the time that I have a lot to learn from her and I am so grateful that I get to do that every day.

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