The Miracle of Ordinary Days - Part 11

On March 15th, my brother Andrew returned from his missionary service in the Washington DC South mission.  Abby was stable at that point but was still not able to have visitors so we arranged for the family that had not been able to see her to come to the glass room in the NICU and view Abby through the glass.  To do this she had to be taken off of her monitors for a few minutes and carried in.  The nurse accompanied Aaron so that Abby would have someone to help her if something went wrong.  Luckily, nothing did.  After almost two months of waiting, it was fun to let everyone finally get a glimpse of her.  I stood out with my family while Aaron brought her to the glass.  Everyone took pictures and it was a great day.  Abby had only met Aaron and I and her four grandparents.  She had no idea how many family and friends were waiting anxiously to meet her.  It was fun to finally be able to show off our little girl if only for a few minutes.  Her family was very excited to see her. 

The NICU became my home away from home.  I got to know every nurse in the place.  I was there so much that many of the nurses told me that I should go back to get my degree in nursing and join them there.  As flattering as that was I didn't always like being there.  Life was on hold.  The days and weeks seemed to drag on.  It felt like we would never leave the NICU.  January had passed and so had February, March came and went and April was upon us.  Abby had made steady progress through that time gaining weight with no life threatening issues.  She was still on oxygen but needed less and less.  Her food intake was increased.  She was good at nursing but really bad at the bottle.  An occupational therapist named Liz worked with her often to help her work on feeding.  Nursing exclusively wasn't an option as nursing wore her tiny body out and I couldn't be there for every feeding so figuring out the bottle became critical for her to gain the weight and take the feedings that she needed to go home.  She had a difficult time figuring out the bottle so everything that she could not eat by mouth she would get through her NG tube. 

Abby with us some time in early March.  One of our great nurses, Wanda, gave her the hat and the little bunny for her bed.  Abby was a favorite among the nurses because she was so small and sweet. 

During this time we saw people we knew come and go through the NICU.  It was nice to see them but not in that situation.  My friend Tawna had a baby during that time and another friend Shiela also came to be with her baby.  Shiela was there for a few weeks in a different room from us.  She very sweetly watched over me and asked me about Abby.  She gave Abby a bear to sit in her bed with her.  Common experiences bond people together like nothing else can.  We have stayed NICU buddies ever since. 

In April, we were moved to the Intermediate Care Nursery, lovingly called the feeding and growing nursery.  Oh, blessed day!  Abby was no longer critical but still did not meet the requirements to go home.  The feeding and growing nursery was like heaven after the months of the NICU.  It was a quieter and more peaceful environment.  The pace there is much slower, the care times longer.  We could finally sit with Abby for a half an hour or more at a time without interruption.  It was like heaven after those short visits we had at the beginning.

There are a few requirements for a baby to be able to go home from the NICU.  They need to be able to maintain their own body temperature, they need to be free from central apnea spells for at least 24 hours, and they need to be able to take all of their meals by bottle or breast and be growing at an appropriate rate.  Apnea is scary even when you get used to it.  The premature nervous system in these babies has a difficult time maintaining steady breaths and heartbeats.  This causes the baby to stop breathing and the heart rate to plummet.  It is very common and is usually very temporary.  The first couple of times it happens it is particularly scary but after that you learn quickly how to stimulate the baby back to normal breath patterns. 

There are two main kinds of apnea and these two can happen at the same time, central apnea which is caused by the immature system and obstructive apnea that is caused by the tiny airway being obstructed.  Tilting the babies head the wrong way can cause it.  This usually happens during a feeding when the baby is trying to suck, swallow and breathe at the same time.  At this point Abby was doing well with these things.  Her central apnea spells had stopped for the most part and her obstructive apnea spells were very minimal.  Her problems with eating continued but there were a lot of firsts that we got to participate in with her that were so precious.  One of the best was when she received her first real bath.  She had been given sponge baths since birth because of her sensitive skin and the many IV's etc. so it was fun to help with that.  There was also more time to play with her and interact. 

This is her first bath.  Can you tell she didn't like this very much?

Abby snoozing. :)

Abby surrounded by her cuddly friends, including bears from Daddy, Grandma B., Shiela Lee and a sheep from me.

Quiet time with Daddy near the window.  Doesn't that just melt your heart?

Her due date came and went with little fanfare.  Most babies are able to be discharged somewhere around their due date.  Abby was still struggling to grow.  Her caloric intake was increased by adding formula to the breast milk.  We learned quickly that breast milk alone would not be sufficient to increase Abby's weight.  I still pumped through the day to keep my milk supply up for her.  She was doing well but still not eating enough by mouth.  Part of the problem was her tiredness.  Everything wore the poor kid out.  I breastfed and she got tired.

We tried every nipple for the bottle known to man.  Our occupational therapist went all over town to find every new nipple she could.  Once we found the right one we couldn't get through a feeding by bottle without an obstructive apnea spell.  She could only do a little at a time never more than one ounce.  My mom guilt returned full force because I knew that she enjoyed breastfeeding and did the best at it.  I felt sad that she couldn't do such a normal, natural thing.  It was hard for me that she was not strong enough to get all of her calories through that.  As with so many other milestones that Abby has achieved both in the hospital and still today, we learned that there would be no rushing her to achieve our purpose.  She would take her time and do it when she was good and ready.  It is a humbling message from one so small.   

These days tested our patience.  We felt like our desire to take Abby home with us was a reasonable one.  We prayed that she would be able to figure out how to eat without the aid of an NG tube.  She didn't like her NG tube and frequently would pull it out and make herself sneeze like crazy. Who could blame her?  I can't imagine how uncomfortable it would be to have a tube go from your nose to your stomach.  She didn't need oxygen anymore.  There were no more apnea spells.  She had grown past all of the other obstacles.  This was the only thing keeping her from coming home with us.  During this time we were relocated into some new rooms in the back of the NICU that had recently opened up because the Intermediate Nursery needed some maintenance done on it.  It was strange to return to the NICU and not be in the same room.  Our friends had all been discharged and we had interesting new neighbors.

The day we moved into that new nursery I went in for Abby's regular care time and was having some mommy/daughter bonding time when another mother came into the room.  She was raging at the nurse and clearly frustrated.  She was yelling and ranting and raving.  It was quite a show.  I sat very calmly and watched the scene from my rocking chair.  She was telling the nurse how unfair it was that her baby had to be there.  She didn't understand why he had already been there for three days and still couldn't go home.  The nurse did her best to explain and to comfort her and calm her down and left the room. 

I still sat very quietly rocking Abby to sleep.  The other mother stood looking at her baby and then turned and said something like, "I hate that my baby still has to be here.  I don't know why they are making him stay. He was supposed to go home yesterday.  I want him home."  I nodded at her and told her that I could understand that.  She went on to tell me that they were keeping him because he was born a little early and was having apnea spells but that she felt he should still be able to go home anyway. 

I listened and talked to her about why they were keeping him, repeating what the nurse had just been saying to her. She had clearly not heard what the nurse was saying because she looked at me like I was giving her new information.  She went on about the NICU and how much she hated being there.  She calmed down after a few minutes and introduced herself and asked me my name and then asked about Abby and her progress. 

I remember she asked, "How long have you been here?"  I realized that she was seeing my much older looking baby and thinking that we had only been there a few days also.  I smiled at her and answered, "About three and a half months."  The look that she gave me next was priceless.  Her jaw dropped and she didn't speak for a few seconds.  She looked sheepish and exclaimed, "Oh, honey, I must sound like a total witch to you." And then she started to cry.  I reassured her that I understood.  She apologized to me for the way she acted and we talked for a few more minutes until the nurse came in.  Before she left she turned to me and wished both Abby and I good luck with a pleasant smile on her face.  It was good to be able to provide some perspective to a mom going through a hard time. That whole encounter still makes me chuckle. 

Abby loved her hands and would always have them around her face.  She liked to pull out that pesky NG tube, too.

The NICU is just hard, no matter how long you are there it is a difficult experience and I can understand why some parents loath their experiences there.  I think I gained an unique appreciation for the work that the doctors and nurses do because they had done something so miraculous for us.  They had taken a tiny one pound baby and given her the care that allowed her to live and helped her grow into a healthy baby.  It was a miracle, plain and simple and I suppose the miracle of it made the waiting worth it.  We would eventually take our baby home with us but our journey in the NICU was not completed and life still had a few more surprises in store for us all.