A Special "Day"

I had the pleasure of connecting with a woman, Mrs. Day, who saw the Fox News story back in April. She lost her baby to Trisomy 18 nearly 11 years ago but was so inspired by Brayleigh's journey. After four months of communicating via phone and email, she came by to meet Brayleigh today. I tried to be sensitive to her emotions when she asked to hold her. Through her tears of admiring Brayleigh's progress and abilities, we did manage to laugh a lot. She gave Brayleigh a blanket that belonged to her daughter, Jade, and that nearly put me in tears. In the end, our babies' journeys (while different) have been and continue to be an inspiration to us all.

A Mother's Love

At seven months pregnant - Exodus Photography

You have waited for this day when you learn that you are pregnant, and suddenly all the random things that go along with finding out this news start running through your mind and they instantly become the most important things in the world. You ask yourself a host of questions.  Is it a boy or girl? What do I do with the nursery depending on the answer to the first question?  What remodeling or repairs need to be done around the house?  What names can we think of?  How will we break the news to family?

Once you have nagged yourself long enough about the basic questions, then you start imagining life with your new baby.  How will we manage with two children?  How will big sister adjust once we bring our baby home? When will he or she crawl or walk?  Will the baby like the same foods as big sister? How will I handle the topic of not sharing, or what sort of new discipline techniques will I adopt to resolve sibling fights going on behind me in the back of the minivan?  Yes, of course, we will need a bigger car now.  Your mind races. You can't sleep at night.  Life is perfect, nonetheless, and will be even more perfect when your second bundle arrives. Your family is all that you have dreamed of since you were a little girl.  Nothing else in the world matters at that moment. 

The months go on and you no longer have to internally process your pregnancy because you have a baby bump, and everyone knows and starts to ask questions.  You do not mind, though, because you cannot be more elated to talk about the expectation of your new baby.  It is the topic du jour - at home, at work, at church, at the preschool, with strangers in the grocery store or at the mall. As your stomach grows over the months, your anticipation of your baby's grand entrance into the world grows with it.  Then you receive a phone call from your obstetrician's office that brings you to your knees.  There may be something wrong with the baby according to some blood work that was drawn a couple of weeks prior.  'TRI-' what? I recalled saying to the slow-speaking nurse practitioner on the phone.  She knew me personally and I could tell that it was news that she did not want to give me.  She ensured me, though, that many mothers receive a positive screen for this genetic abnormality but usually it is false.  In fact, just a small percentage of babies will be born with what she finally had to spell out for me - Trisomy 18.  

While she tried to give me hope, this condition would mean a lot of things that I just mentally could not prepare myself for.  The biggest uncertainty was whether our baby, which at this point we found out was a girl, would even survive the birthing process.  This condition meant that I might only be able to hold her in my arms for just a few days, hours or even minutes. An unsettling feeling rested in my belly, nonetheless, and I could not help but think about my dreams being shattered.  I was five months pregnant now, and everyone knew that I was expecting, but how would I handle conversations with friends, colleagues and strangers about the health of my little girl?  I had to hold on to the fact that the test result could be false.  About a month later, though, another more extensive test would confirm that our baby would have a 99.6% chance of having the genetic disorder that could likely claim her life before she would be able to even walk.  How does a mother process this?  What did I do wrong?  So many things run through your head and you wonder how the God that you serve can put you through something like this as a mother.  All of the conveniences of life that accompany healthy children like feeding them a bottle, videotaping their first wobbly steps as they learn to walk and simply playing with them at the park become a pipe dream.

The conversations with strangers had now quieted down.  I had little to say.  I did not know what to expect.  I wrestled with things like doing a maternity photo shoot, a ritual that moms do to celebrate and document their pregnancies.  How would these pictures affect me if for some reason, my baby was born sleeping?  Would there be a baby shower?  What would I do with the gifts if for some reason....   With my prayer warriors by my side, though, I anxiously approached my due date. 

Loving Brayleigh - Exodus Photography

Brayleigh arrived a little over a month early.  I saw her briefly and she was taken away to be further examined and placed on equipment to help her immature lungs function.  As I lay on the operating table, I still had no idea of what her status was. Did she really have Trisomy 18? Was it a mistake? Was she healthy?  I heard her cry, but I still didn't know. I just recall Chris whispering in my ear how beautiful she was.  At that moment, I had decided that regardless of what the doctors found, regardless of how long she would be with us, regardless of any abnormalities or physical deformities, I was going to love her.  She was my baby despite the fact that I was told to start the grieving process while I was still pregnant.  With every strong kick and every jerking turn, though, I knew my baby would be strong and would be a survivor.

For the first few days, I had little contact with her.  She lived within a large plastic isolet in the neonatal intensive care unit at the hospital.  I would go visit her from my own hospital room, but picking her up and holding her in my arms was a huge ordeal.  She was connected to wires from every end, and I was told that it would be "stressful" on her to move her in and out of the bed.  I demanded, though, to do motherly things - like change her diaper inside of the isolet, put her clothes on and wash her face.  It was all that I could do to be a mother to her.  And of course, I loved her unconditionally from the outside of that plastic box.  I knew that she could hear me and feel my presence so I talked and sang to her every chance that I could.  When I was able to hold her, she would settle in my arms comfortably, so I knew that she was aware of who I was.

Life with Brayleigh over the past seven months (since her days in the NICU) has had its ups and downs.  Yes, it has been seven months and she has far exceeded anyone's expectations.  Things have somewhat stabilized and normalized, and I am finally settling into the new norm after multiple hospital stays, starts and setbacks and watching her evolve as a baby living with a life-threatening genetic disorder.  As a mother, though, you just want the best for your children, and the greatest joy over the past seven months is knowing that I have fought for her, been a voice for her, shared her story to inspire others and created an awareness around her condition.

God has blessed me to be the mother of an angel for whatever reason. I often ask "what do you want me to do with this charge?" instead of asking "why this has happened to me?" I still wonder every day if I am doing what He wants me to do with this big responsibility.  What I am certain about is that Brayleigh has, undoubtedly, changed me as a mother, and I cannot imagine life without her just the way she is.

Stepping into Spring

As spring sprung, the dogwoods reared their heads and Georgians were showered with yellow-greenish pollen for the past several weeks.  At the same time, Brayleigh turned six months old, and the meaning of her journey took on a whole new dimension.  In essence, we had previously planted our own seeds, and last month was definitely the time to see our story manifest and grow.

The month began with a wonderful news segment produced by the medical team at Fox 5 Atlanta on Brayleigh's life with Trisomy 18.  Medical correspondent, Beth Galvin, featured the challenges that babies have with the disorder and the ways in which Brayleigh is thriving through it all. The story was so fittingly labeled, "Loving Brayleigh," because in the midst of the ups and downs, the medical challenges that force her into the hospital or the joys of watching her laugh at her big sister, through it all we are just loving our precious girl.  The news story can be found here: "Loving Brayleigh" on My Fox 5 Atlanta

Since the Fox story aired, I have been overwhelmed with people reaching out to me for inspiration, strength and even just to keep me encouraged to hang in there and continue loving our baby girl. All of these moms have children with a Trisomy disorder, many of whom are thriving as older children. Some of the moms only had the opportunity to hold their little ones for a few days or even hours. I have exchanged emails and spoken to a few of them, and it is so wonderful to know that a community has been created for Trisomy parents to share their experiences with one another. The story was so big that it even made it to the Trisomy 18 Foundation's Facebook page, which has over 45,000 followers.  Just days later, the Georgia Department of Public Health posted a story on Brayleigh's journey as part of the March of Dimes' March for Babies Walk.  The story can be found here:  Dept of Public Health March for Babies Article

Brayleigh also had the opportunity to enjoy an Easter brunch outing with the family at the posh Commerce Club in downtown Atlanta's 191 Peachtree building.  It was her first time out of the house socially, and not for a doctor's appointment.  It was a huge milestone for our family, and we had the chance to "show her off" to familiar faces and those we met. 

We also built a successful fundraising team for the March for Babies walk in support of Team Brayleigh.  Wearing custom tee shirts that displayed "Her Story and Her Footprints," we had a small army of supporters who proudly walked 3 miles through the streets of downtown Atlanta during the threat of thunderstorms and tornadoes in support of our baby girl. God was certainly moving last month. The conversation has begun. Trisomy disorders do not have to be a family secret. These are real babies with a real message of God's love regardless of how long we get to hold them in our arms. I never knew what Brayleigh's journey would ultimately mean as the future was so uncertain, but what I do know is that God has His hands all in it!

The month, though, was not all roses.  Brayleigh had to have emergency surgery on April 13th for Meckel's diverticulitis and intussesception, or basically a blockage in her small instestines that was preventing her bowels from passing through. After noticing what appeared to be fairly extreme gastrointestinal issues, she ended up at the children's hospital for what would turn into a  five-day stay. Apparently, a small percentage of the general population is diagnosed with this condition, and often times it is discovered by the age of two. Brayleigh recovered well from surgery.  She was extubated shortly after the procedure and despite a little fussiness from time to time, her overall spirits were pretty upbeat. For the first time ever, she was moved from the critical care unit and onto the regular "floor" where children of all ages had everything from a broken leg to surgery to repair their vocal chords. 

Brayleigh somehow managed to prove that she was more stable and did not require the "around-the-clock" care, although I quite honestly missed the attention from the pediatric intensive care unit.

We were elated, nonetheless, to bring our baby girl home. We no longer had to worry about hospital shifts, dining options and shuffling big sister from place to place while we made sure Brayleigh was ok.

God is obviously working miracles through this little girl, and Chris and I as parents are here to be her voice.  We clearly moved waves this past month in trying to bring awareness to Trisomy 18. In our own way, we are watching our seeds bloom and are fortunate that our gift can be a blessing to others.

Happy Birthday, Brayleigh (A Note from Dad)

Birth. Nailed It!

This past weekend was extra special because our daughter Brayleigh celebrated five months of life! 

Five months ago, on October 8, 2014, our lives were forever changed by the early arrival of Brayleigh Christine Richard. Weighing a bit less than four pounds, with underdeveloped lungs, a hole in her heart and most challenging of all a rare chromosomal disorder known as Edward’s syndrome, Brayleigh’s arrival and early days were far from routine.  We heard all of the things that no parent ever wants to hear.  We were told of devastatingly high mortality rates, extreme birth defects and severe developmental delays.  Emotionally, it was the most challenging experience of our lives.  Most difficult of all were the constant reminders, from otherwise well-meaning caregivers, that Brayleigh might not make it out of the NICU.  We were told that her condition was “incompatible with life.”  I am happy to report that God had a different plan!

Only God knew that five months later, our precious daughter would more than survive.  She would thrive!  Brayleigh now weighs ten pounds and has a double chin and rolls of fat on her thighs to prove it.  She is on a special formula that is easy for her to digest and she is responding well to it.  She is able to swallow small quantities and we are optimistic that with therapy she may be able to come off of her feeding tube.  While still on supplemental oxygen, Brayleigh can maintain her oxygen level for long periods of time without the extra oxygen.  Doctors are hopeful that the small hole in her heart will close on its own.  If necessary, as she grows and continues to gain strength, the hole may be closed surgically.

These months have not been without their challenges.  Since coming home, Brayleigh has been re-admitted to the hospital twice; once for over a month. We have been faced with difficult decisions regarding her care.  We strive to balance the aggressiveness of the care against the likelihood of a positive outcome all while keeping Brayleigh’s comfort and quality of life at the forefront.  We decided early on that we will give our child a chance and not allow anyone to deny her care simply because of her condition.  We strive to stay faithful and know that God’s will is what will prevail.  We consider each day with Brayleigh to be a blessing.

Despite all that she has been through, Brayleigh is such a happy baby. She smiles and coos often especially at the sight of a familiar face or sound of a familiar voice.  She is a constant reminder of God’s faithfulness and the power of prayer.  Her life is an inspiration.  So many people are closer to God and have a stronger prayer life by virtue of joining us in our prayers for Brayleigh.  Thanks so much to each and every one of you for kind words, deeds and actions during this new chapter of our lives.

Chris

First Holiday

We thought Brayleigh would have been home for the holidays. After nearly three weeks in the hospital, though, Miss B. had different plans. On the morning that she was supposed to be discharged (nearly two weeks ago), she had a fairly significant medical event that would change her level of treatment. With no warning, Brayleigh's oxygen saturation levels suddenly dropped, suggesting she was not getting enough to maintain good breathing. At the same time, her heart rate plunged and instantly a code was yelled out by one of the medical staff.  Brayleigh's hospital room was quickly swarmed by over 20 doctors and nurses running to her aid. She recovered fairly quickly on her own, but since then, everyone has been on alert and highly vigilant at the sound of any alarms blaring from her bedside monitoring equipment. 

The last couple of weeks have been very trying with her having increased apnea episodes, several desaturations (or desats) and more discomfort with feedings. Our baby girl's first Christmas was certainly not like what we had envisioned. She was switched from a feeding tube that went straight into her stomach to one that goes into her intestines to help minimize the discomfort from acid reflux. Brayleigh also had to undergo a sleep study and an EEG to monitor her brain activity over a 24-hour period. To make matters worse, an x-ray showed that she could have had what looked like a larger amount of air in her intestines and would have to be off of her feedings all together and on antibiotics until it resolved itself. Only several x-rays would determine how that would progress.

So because Brayleigh was unable to feed, she needed a stable IV line to be able to give her nutrients. Since she is so small, she does not have many "good veins" available to have a steady IV in the arm or foot. Therefore, she was scheduled to have a minor surgical procedure done this past Sunday to insert a central IV line into her neck and through the large vein leading right up to the heart. Chris and I were hesitant to have her endure such a procedure, which would require general anesthesia and intubation (a breathing tube, which she may have difficulty coming off of). A less invasive procedure was attempted previously, but the team did not think they would have much success. Well, a few minutes before she was scheduled to go to the operating room, the medical team decided to try the less invasive procedure right at her bedside to insert the IV, and were successful!!!!! It was one of the best Christmas presents yet....

Brayleigh has become more stable through a host of trials including new medications and being off of her feedings, but most importantly, she has been granted her strength through the grace of God. Her tiny little body has proven that she is such a warrior, fighting to show us that there is certainly a plan for her existence. And despite being told that she may be with us for a week when she was born, Miss B. turned 12 weeks old on New Year's Eve.  What a way to close out 2014, and what a precious gift our family was blessed with.

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!

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