Saturday, November 29, 2014

Seize the Moment

Exodus Photography - Newborn Session

In the spirit of giving thanks this holiday weekend, I am truly grateful to see this day.  Miss B. had a professional photo shoot today, while at the same time, we were finally able to get photos of our new family.

We booked our photographer months ago -- for a maternity photo shoot and for subsequent photo shoots including a newborn session. Honestly, I was hesitant to even do a maternity shoot, not knowing what types of feelings it would later evoke in the event that our baby girl would succumb to her illness soon after birth. Listening to what the doctors had to say about the potential for Brayleigh's very shortened life span (measured in weeks, days and even minutes), I was even more reluctant at the time to pay for future pictures of our baby girl especially without knowing the full condition of her health. With my unwavering faith, though, I took the leap and decided to pay in advance for a newborn photo shoot months before she was born.

So this day is particularly special.  At nearly eight weeks old, Brayleigh demonstrated that she is a real trooper (no surprise there) and ham (like big sis) in front of the camera.  She endured three and a half hours of posing, prop and wardrobe changes, and non stop cameras in her face.  We removed the feeding tube, she had no additional oxygen and was allowed to just be free.  In a completely natural state, Brayleigh was simply gorgeous and angelic from head to toe. She stayed awake the entire time taking it all in, while I couldn't help but seize the moment. I pray long and hard that this day could last forever especially since Brayleigh's future is medically uncertain.

Despite any inkling of doubt, nonetheless, I truly feel like this day would not have been possible without the constant prayers of family and friends and believing that God has this situation in His control.   No one knows what tomorrow holds, but I am living for today...and today, Miss B. was an absolute superstar!

Wednesday, November 26, 2014

Just Breathe

I did not realize how much people relied on my blog updates to hear about what's going on in Miss B's life, so I apologize for the delay. After we returned home from her most recent hospital stay, Brayleigh spent the first few days at home off of her oxygen. She seemed to be tolerating room air just fine. We have her connected to a pulse oximeter machine so that we can always know how her oxygen saturation levels and heart rate are reading. We always want to see 100 on the oxygen level (top number) or at least 90 to feel comfortable that she is taking in all of the air that she needs.

A few times, though, we got concerned because her oxygen level had begun to dip.  Occasionally, it dropped into very dangerous territory. Brayleigh would let out a screeching cry as this was happening. Chris and I repeatedly told our baby girl to "breathe" as we tried to get her stimulated again by gently shaking her or holding her up on our chest.  Eventually, she would work her way back to 100, but those few seconds of what appeared to be our precious daughter losing oxygen were the most terrifying.  So we put her back on her blow-by oxygen just in case she continued to have problems.

After discussing this with our in-home nurse, she came by and asked us a series of questions - one was whether Brayleigh had turned blue as her oxygen levels dipped.  The other question related to the frequency of her bowel movements.  I didn't quite understand the latter, but it turns out the the sudden dips in her oxygen could be related to constipation and or acid reflux, and may not be a true read of respiratory distress. She also did not appear to turn blue during these times.  A visit to the pediatrician's office also concluded a similar diagnosis.

As parents of a baby with ongoing medical needs, we become overly vigilante and often take on the role of medical mom and dad. From taking her temperature throughout the day, jumping up at the sound of alarms going off if her oxygen or heart rate seem out of whack, or grabbing the stethoscope to hear if her feeding tube is in the right place in her stomach, we are constantly on edge. We even had a wonderful caregiver (with a nursing background) come to the house for the first time to watch Brayleigh for a few hours, and she literally sat in front of baby girl the entire time, jumping up every time she heard the slightest cooing sound coming from her mouth.

Although we have a lot of equipment and information at our fingertips and have a heightened sense of awareness in case something goes wrong, sometimes we just need to breathe our own selves and read into what Brayleigh is trying to tell us.  Are her cries showing that she is in pain or does she just want to be held?  Instead of always taking her temperature, can a kiss on her forehead give us a clue as to whether she is too warm or too cool?  This time, Brayleigh's alarming cries, not necessarily the equipment, signaled her discomfort, and the erratic swings in her oxygen levels have eased a bit. We have to take a step back and remember all that our baby girl needs us to be are loving parents - a typical mom and dad equipped with those general instincts to know when things are right or not feeling right at all.

Thursday, November 13, 2014

Critical Decisions

Last Wednesday, Brayleigh appeared to have some difficulty breathing. Chris and I took her to the emergency room at Children's Healthcare of Atlanta Egleston, and she apparently was not the only one suffering from respiratory distress.  The room was totally packed with children of all ages, struggling to breathe and coughing incessantly.  This is the season, we kept being reminded.  Nonetheless, because Brayleigh was a preemie and still very vulnerable for catching infections, we were taken to a room right away and treated as a real emergency in a  matter of minutes.

A doctor came into our room instantly and asked us what we wanted to do.  It sounds like an odd question to ask parents of a child in respiratory distress, but for a child with Brayleigh's genetic abnormality, some doctors might suggest not doing anything aggressive or even at all...well, because 'you know, she does have a life limiting condition.' As parents, we were unfortunately faced with a critical decision of doing what we could to save our daughter's life or choosing to do nothing and slowly watch each breath of life that she has weaken further.  We were told that if she were put on a ventilator, she may never be able to come off, and we would be forced with an even tougher decision, one that we just could not see making. With tears in our eyes, Chris and I chose to give our baby girl a chance, and so the treatment began. Brayleigh was put through a series of tests to rule out any infections that could have sent her breathing into a spiral. We wouldn't know the results for a couple of days. She was immediately put on a ventilator with a breathing tube (upper left picture) to help her breathe and was transported on a gurney to the pediatric intensive care unit.  In just two days, though, the tube was switched to a mode where it stopped breathing for her and was just providing additional pressure to keep her airways opened. She was breathing fine on her own, but was still receiving some supplemental oxygen. We learned that the breathing tube was too small for our baby girl, and either she would have to endure the tortuous process of getting another one in, or just coming off of it all together.  By Friday, the tube was removed - so much for babies having a hard time coming off of it.

Brayleigh was then placed on a ram air cannula that was placed just at her nostrils (upper right picture) to provide her with some oxygen and additional positive pressure to keep her breaths constant.  By this time, we learned that her blood and culture tests came back negative for infections, so things were starting to look good.  With the cannula just at her nostrils, she would be able to have the feeding tube in again and would be able to get her milk feedings started.  Brayleigh no longer needed the additional oxygen, and she was also stable enough that we could hold her.  By Tuesday afternoon, Brayleigh did not need anything on her face for additional oxygen nor pressure, and we were able to see her beautiful face for the first time since the few minutes just after her birth.  This was the biggest milestone yet!

She was discharged yesterday, exactly one week later, and is back home with us. Our baby girl was once again given the chance at life.  She continues to prove that her life has a purpose and God has a plan.  While this may not be the last time that we are faced with a critical decision about our daughter's health and the appropriate treatment for her, we can only give her the same opportunity that any child would receive without pre-existing 'limitations.'

Sunday, November 2, 2014

Coming Home

It has been almost a week since our little Brayleigh was able to come home.  As the nurse wheeled her out towards the front doors of the hospital, I couldn't help but feel mixed emotions - sheer joy and gratitude along with trepidation and a sense of doubt (not knowing exactly how our lives would change). After spending 19 days in the NICU, we were beyond speechless, though, at Brayleigh's readiness to leave the security of her around-the-clock medical staff to be with mom, dad and big sister, Courtlyn full time.  Around all of the excitement over bringing our baby home, we ultimately knew that life with a medically fragile baby would certainly brings its challenges, such as learning how to use new equipment, making sure she is getting enough oxygen and providing her milk through a feeding tube. We have a wonderful nurse that comes in a couple of times a week for extra support, and of course, we have a number of pediatricians and specialists that we'll have to frequent over the coming months.

As with any new parent, Chris and I are definitely sleep deprived, physically exhausted and emotionally drained but we continue to be inspired by a tough little girl who, like any baby, just wants to be held, comforted and loved. Only God knows what Brayleigh's story will ultimately look like, but for now she is but a miracle that has changed our lives and strengthened our faith forever.

"When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy to love."  Marcus Aurelius