I thought about a lot of things last night on my way back home from the hospital. Things like why is Emilia not progressing, is it something I am doing wrong, is her doctor doing what's in the best interest of her... and of course all these thoughts end up with the question why I could not hold her longer in my tummy... I think I will always have that guilty feeling.
Despite all my care, why is Emilia still on oxygen and still in the hospital? I thought she would thrive if I cared for her by her side as much as possible. I thought she would be the strongest, healthiest baby in the whole unit. Unitl I recently saw other babies who completely come off of respiratory assistance at 30-32 weeks, I thought all babies were like Emilia needing to be on CPAP and low flow for a long time. I even got steriod shots before she was born... which was supposed to help her with lung development and yet she has chronic lung disease. Her being on low flow even at post-term is probably the reason why virtually everyone is sure she will go home on oxygen. She should have come off a long long time ago like other babies.
There is this one baby who was born on the same day as Emilia and came off low flow and went to Level II Nursery a long time ago, despite the fact that her mom never came to see her, except 2-3 days during her entire stay in the NICU. No breastfeeding, no Kangaroo Care, no diaper change, no singing or talking... and that baby still was way ahead of Emilia. I started to doubt whehter all my care and love even made any difference. But then, of course, even if I knew my care and love would not make an inch of difference, I would still have done the same, wouldn't I?
As September approached, I was growing anxious because Emilia was not progressing as fast as I hoped. I tried not to but couldn't help comparing her to other babies. When I read back, a certain amount of frustration and anxiety is present in the daily journal I keep for Emilia and also in the posts on this blog. I thought I was keeping the anxiety to myself but I must have been looking pretty depressed because a lot of people have been asking me if I am okay. Have I projected my frustration to Emilia? Maybe I am sending the wrong energy to my baby. She probably senses my desperate feelings... my anxiety, and even anger sometimes.
It's now October. I thought she would either be home soon on oxygen -OR- be home late without oxygen. However it looks like she will be home late AND on home oxygen. I hate the idea of home oxygen so much that I came to despise all the doctors and nurses who told me Emilia needed home oxygen. I do finally accept the reality that she may need home oxygen and she will be safer that way. I still hate the idea of the oximeter monitor and oxygen tank being attached to her body even at home. Breastfeeding and bathing is not so easy with these tubes and cords. Besides, what mom wants to see white tapes on her baby girl's face for months and months? Red sores from tapes and oxygen tube impression marks are now permanent features on her cheeks. Those tapes are too harsh for baby skin.
I am trying not to worry about her spells. If she still has spells, it just means she is not mature enough and she is not ready to come home. I don't want to count how many spells she has a day.... in the end, it's really meaningless to keep track of her spells as worrying about them does not help anything at all. I just hate those people who treat her as a slow baby who still has spells for choking and reflux.
This is one thing I realized.
She will grow one day and when she is ready to come home, she is the one to tell me. I just need to wait by her side and watch over her until that day comes. It's not something I can rush her to do. I just hate having to explain to everyone why are still not at home. I just tell them Emilia thinks NICU is her home because Mommy's there all the time.
I whisper in her ears when nursing her:
"Emilia, drink lots of milk, grow strong, grow tall, grow big, grow smart, and don't worry too much about having to go home soon. Mommy will be here with you as long as you need to be here".
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