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

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

Thursday, October 23, 2014

Welcome Baby Brayleigh

Our family wants to personally thank each of you for your prayers and support over the last few weeks. Despite facing a life limiting condition, known as Edwards Syndrome, in which the general prognosis is bleak shortly after birth, in just a couple of weeks, Brayleigh Christine (with a name meaning our little Ray of Hope in Christ) has defied the odds.  Our little miracle baby has overcome any limitations that doctors thought she would initially face as she meets milestone after milestone each day. She is still in the neonatal intensive care unit at Emory, and while she requires some supplemental oxygen and a feeding tube, she is breathing mostly on her own.  She is also learning to feed from the bottle, one of her most recent accomplishments.

Brayleigh was born five weeks early on the early evening of October 8.  As a premature baby and with the general health challenges that accompany Edwards Syndrome, Brayleigh is completely off of IV fluids, is tolerating my milk and the amount of oxygen that she was getting has been reduced down to nearly nothing. She has handled the lower levels well, and they have removed the large oxygen mask from her tiny face, replacing it with a small plastic cannula that just runs through her nostrils. (We can actually see what she looks like now)! She has been working on supplementing being fed through a feeding tube with a bottle and syringe.  She is learning to swallow without it affecting her breathing.  With things going better than expected for our little Brayleigh, she should be able to come home over the next few days, a treat that we had only dreamed of.

This journey has undoubtedly tested our strength as a family and our faith as Christians, but we are forever grateful for our precious gift and blessing, who has taught us so much about perseverance and overcoming the odds when the world has placed limits on you. Brayleigh is fully aware of our presence (smiling and cooing when she sees us), she loves to be comforted in our arms, responds to our voices and thoroughly enjoys lullabies.

We know, though, that the road ahead will be far from easy as we provide Brayleigh with all that she needs from medical care to the simple yet powerful comfort of our loving arms. Please continue to keep our family in your thoughts and prayers, especially big sister Courtlyn, who asks a lot of questions and keeps us honest as we try to establish a new normal in our family.

Peace and blessings,

Sabrina - Brayleigh's mom