Saturday, December 20, 2014

Deja Vu

Brayleigh in her hospital bed

It has been nearly a week since Brayleigh had to be readmitted to the hospital.  She appeared to have breathing trouble, but this time, it may have been associated with acid reflux or some other gastrointestinal issue.  Coming to the emergency room, this time, was certainly better than our last visit a month ago.  We felt more confident after having our baby girl home with us for some time. We knew her medical history well.  We could better communicate when she appeared to have dips in her oxygen levels.  We knew what soothed her and what didn't.  We knew our baby!  We also knew that we were not going to let anyone tell us that she could not be helped and that there was no hope for her.

Once again, though, we had to hear the speech about whether or not we would want to put the breathing tube down the little one's throat if, for some reason, she could not maintain breathing on her own.  Once again, we were faced with the  decision of whether or not we would give Miss B. a chance at life if we came to such a critical juncture.  And once again, our answer was a resounding YES!

I see that when you have children with a chronic illness and have to spend a bit of time in hospitals, the medical staff begins to know you by face and name.  We have, fortunately, been able to have some of the same doctors and nurses that we had before in the pediatric intensive care unit.  One doctor, in particular, has always been reassuring to us that we have been making the right decisions for our little girl. That has been more than encouraging to both me and Chris.  Instead of labeling Brayleigh as a Trisomy 18 baby or blaming every occurrence or hospital visit on her condition, he reassured us that any baby can have gastrointestinal problems and many babies will have changes in their breathing and oxygen levels.  We just do not always know it because they are not connected to machines 24/7.

Regardless of whether Brayleigh would have some of these 'normal' baby issues outside of her diagnoses, I continue to be inspired by her strength and many of the other little fighters at this hospital that I see walking through the cafeteria or the gardens with IV fluid bags, oxygen tanks or pulse oximeter machines close by. They are all being given a chance at life, and have chartered their own stories despite their medical histories. We expect Brayleigh to come home in the next day or two, but as I sit in her room at the hospital, watching her rest peacefully, I cannot take life and this moment for granted. While we have been here before on this same floor at this same hospital with some of the same staff in a similar situation, this time is different. Miss B. is different!  She is even stronger!  She has not needed a breathing tube and is breathing fine on her own. We are stronger, more faithful and confident and even better parents through her journey!

Monday, December 8, 2014

A Day to Celebrate

Today is a special day.  We are celebrating big sister's 4th birthday today.  What's even more noteworthy is that Miss B. celebrates her two month old birthday.  Why is this such a milestone?  For those few babies born with Trisomy 18, half of them do not survive past the first week. One study cites that only 5 - 10% of an already limited population live past the first two months.  So while the world mainly recognizes annual birthdays, we joyfully celebrate Brayleigh's first two months with us.

Brayleigh's story is certainly her own. This week, we met with the first in a series of specialist doctors - a genetics counselor, or doctor who specializes in chromosomal abnormalities.  I asked the question regarding the difference in the success of some babies with Brayleigh's disorder from those who fall into such a limited survival window.  The doctor said that one of the biggest differences is due to severely defective hearts that are poorly structured at birth.  Miss B.'s heart fortunately is not structurally and severely defective.  She has a small murmur, that could likely go away over time.  Chris and I were more than relieved to hear the doctor say that, as Brayleigh has shown that she is charting her own course in this journey. One nurse noted that she is especially strong and is extremely alert, traits that do not always accompany the syndrome. This weekend, I decided to turn off her oxygen because she has shown that she really does not need it, as she has recently been using her oxygen mask as a punching bag to keep herself amused.  She is approaching her third day without any supplemental oxygen, so we are truly grateful and looking forward to many more months with our precious angel.

"He gives strength to the weary and increases the power of the weak.  Even youth grow tired and weary, and young men stumble and fall;  but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."  Isaiah 40:29-31