Trisomy Awareness Month

Trisomy 13-Defying the Odds at 8 Weeks    

So God created mankind in his own image, in the image of God he created them; male and female he created them.

-Genesis 1:27

 

Today our daughter Hayden is 8 weeks old.  Although that may not be a huge feat in everyone's eyes, to those that know our story it is a true miracle. Hayden still continues to defy the unfair odds of Trisomy 13 that have been stacked against her since before birth but we are blessed each and everyday to be on this amazing journey with her.

This month is Trisomy Awareness Month and because there is no proven cause or genetic predisposition for both trisomy 18 and 13, awareness ensures that all families can provide support and sympathy to those who are affected.  Trisomy refers to an extra set of chromosomes present in every cell of the body. It is a disorder of the chromosomes and genetic makeup in which infants have 47 instead of the usual 46 chromosomes. Trisomy can occur in any chromosome and the most common type is Trisomy 21 (Down Syndrome), Trisomy 18 (Edwards Syndrome) and  what Hayden has, which is Trisomy 13 (Patau Syndrome).

Infants born with Trisomy 13 are born with different developmental "abnormalities" or "malformations" and physical anomalies. 80% of infants with Trisomy 13 have a congenital heart defect with many having breathing difficulties, apnea and hearing problems, 60% have a cleft palate or lip and Holoprosencephaly or failure of the brain to divide properly, 30% have kidney defects, and 10% an omphalocele. These are just a few predispositions infants with Trisomy face and all of which Hayden has and continues to battle each and everyday.

Phrases like she is abnormal,  incompatible with life, or has a 10% chance of survival to reach one year of age have lost their sting.  Words that should describe Trisomy children should be unique, perfectly imperfect, special, resilient, and compatible with life. Individually. although we all have our obstacles, having an extra copy of a chromosome  makes each and every Trisomy child unique and that much more special.

I believe that we were all created in his own image and that we all have a unique footprint.  I am constantly aware of all of the negativity that surrounds us and some days it does get to me. Although, it is A LOT harder than I ever thought to be a Trisomy Parent, I can never ask the questions why me? why her? why us? Because our journey and Hayden's is not for me to understand but for me to accept and trust.  Everyone has a unique journey but it is the path that God has created for you.

All I ever wanted to do with this blog was to share our journey and spread awareness.  I never knew about Trisomy until Hayden was diagnosed.  Now as a mother and fellow Trisomy Parent it is my priority to spread awareness.   We need to open our eyes and get comfortable with difference. So this month open your eyes to those in need, to those that are unique, and be thankful for what you are and grateful for what you have been blessed with on your own personal journey.

Settling in at Home

The Struggle is Real   

Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

-Joshua 1:9

Tim and I knew that we would have tough days ahead when we brought Hayden home but never did we imagine it would be this hard. It has been awhile since my last post as time seems to slip away and the days and nights tend to run together. With Tim back at work, it has been a true struggle for us both. 

Coming home with any newborn baby is challenging as you settle in and begin to establish a routine.   You begin to learn their feeding cues and what makes them cry and you figure out how to console them through the sleepless nights.   Although Hayden is almost 6 weeks old, 3 of those weeks were spent at the hospital in the NICU. So our transition home has been a lot more challenging  as we adjust to meet her medical needs and our days continue to be filled with appointments, therapies, and specialists. Just in the past two weeks she has had 8 follow-up appointments with her Pediatrician, Plastic Surgeon, Cardiologist, Nephrologist, Ophthalmologist, Geneticist, Pediatric Surgeon, and Audiologist.  

It is the little acts of kindness like an inspirational card in the mail, a meal left at our doorstep or just a note that everyone is praying for us that makes our hardships a little easier.Don't get me wrong, there are days that we both get frustrated, have lost faith, and have felt isolated and discouraged. But through faith, continuous prayers and outpouring support we continue to get strength even on the hardest days.   

I know this is just the start of our journey and that God will never give Tim and I more than we can handle. We continue to praise God each and everyday for blessing us with such a miracle baby.  With all of the odds stacked against her, Hayden will be 6 weeks on Wednesday.  Although she has a lot of challenges and a tough road ahead, she continues to amaze us all and we have faith that everything WILL soon get better and that this too shall pass.

Hayden is Home!

Home Sweet Home    

I can do all things through Christ who strengthens me.

-Philippians 4:13

On Monday we finally got to bring our precious Hayden home!! Our long days and nights in the hospital have finally come to an end and we are so grateful to be back at home away from all of the monitors, tests, and long 12 hour days of consults and checks.  We are thankful to all of the nurses, doctors and staff that helped Hayden continue to grow, get stronger everyday, and defy the odds stacked against her. During her stay at Levine Children's Hospital we were privileged to be able to get to know those that took care of her and some have become family.  They watched over Hayden at night when Mom and Dad were too tired to stay, they taught us that eventhough some of her medical care will be difficult that we can power through it, and even joked  we should be put on the payroll because we were always there. They all said Hayden was the most popular baby at the hospital because everyone knew her story, and wanted to meet her because they knew how special she truly is.

It has been exhausting yet all the while rewarding journey so far being able to experience a true miracle.   We are happy to have her home but look forward to getting settled in and adjusted to her schedule and her needs. Just on her first day at home we had several bumps in the road as we had to adjust our home for her medical equipment, meet with nurses to fill out paperwork hours after being at home,  and replace her feeding tube that she had pulled out while at her first Pediatrician's appointment.  Tim and I know this is just the beginning of our journey and there will be many obstacles ahead but only can continue to stay positive, and pray for God to give us strength to carry us through each day. 

Thank you to everyone who have asked, visited or sent us love for Hayden since her arrival. We are so grateful for all of your continuous prayers, love and support and are truly blessed to finally have our precious little girl home sweet home.

Hayden is 2 Weeks Old!

Hayden's Coming Home Soon    

God is our refuge and strength, an ever present help in trouble

-Psalm 46:1

Hayden continues to amaze us all, including every person, visitor, nurse and Doctor that gets to meet her. Just today her Doctor said it's easy to see that she is blessed with a family of faith surrounded by so much support. We truly are grateful for all of the love, encouragement and support that give us strength to keep going and stay positive each day she is here.

It is hard to believe it has been 2 weeks since our little bundle of joy was welcomed into the world and she continues to shatter the odds everyday. She was born at 7 lb. 9 oz. and is growing considerably each day as she now weighs 7 lb. 15.7 oz. Her progress is an absolute miracle as she is no longer on oxygen, or IV fluids, and continues to take her NG tube feedings.   Tim and I both were overwhelmed with pride as we gave her, her first bottle feeds last week. Hayden is beginning to show her personality and is enjoying her bottle feeds with Mommy and Daddy more and more.



Over the weekend Hayden had a minor bedside surgery to release mucous and pressure from a descended hymen, along with tying off her additional appendages on each hand. The nerves and blood flow will eventually stop and the appendages will soon change color and fall off with no surgery. Since this weekend she has been remarkably calm and content following the surgery. We also had her hearing checked and although she did not pass completely, she can hear sounds above 30 decibels. We will have her hearing checked again in a month along with a considerable amount of follow up consults and appointments.

You can definitely tell there is talk of her being discharged sometime next week as she is having around the clock visitors of specialists checking on her before she comes homes with us. Hayden has a Speech Therapist, Occupational Therapist, Neonatologist, Social Worker, Palliative Care Worker, and discharge nurse now visit her daily. Tim and I also are beginning to get trained on  equipment and procedures when we get home like inserting her feeding tube, changing her omphalocele dressing,  and learning how to control her food pump and respiratory and heart rate monitor that we will get to take home.

Our long days and nights at the hospital are hopefully soon coming to an end. It has been exhausting yet all the while rewarding being able to experience a true miracle. Tim and I know this is just the beginning to the start of our journey and there will be many obstacles ahead,  but we have been looking forward to the day we can take our baby girl home since before she was born. When that day comes, that long lonely road that we take home each night will become the best trip we have ever had.  

Welcome Hayden Elizabeth Brown

January 4, 2017   

First Prayer for Baby- Little One from heaven above may God keep you in his love. Little One on earth below may the angels watch you grow.

A week ago today,  my husband Tim and I lives changed forever. Our precious baby girl was diagnosed at Week 20 with a rare chromosomal anomaly, Trisomy 13.  She has an extra 13th chromosome and with odds and statistics outweighing us for months, discouraging prognosis like "incompatible with life" and less than 10% chance of survival, we joyously welcomed our little miracle, Hayden Elizabeth Brown on Wednesday, January 4, 2017 at 7:50 p.m. Our little bundle of joy arrived into the world anxious to share her Daddy's birthday, weighing in at 7 lb. 9 oz and 21 3/4 inches long. 


It is hard to describe the feeling that you get when you meet your child for the first time. After a week of being 4 cm dilated, on our induction date my water broke that morning. After 12 hours at the hospital, 5 excruciatingly long hours of pushing, and a few complications, we finally met our greatest blessing. For those Moms and parents out there you know it is such a magical moment that you will never forget. For us, hearing her cry and getting to see her face for the first time was witnessing a true miracle. I have never laid my eyes on someone that I knew I could love so much and that could be so perfect.

Although Hayden may not be perfect in other's eyes she is perfect in her Daddy and Mommy's eyes and in God's eyes. Her extra chromosome has made her extra special and that just makes her that much more miraculous. She was born with a moderate size ventricular septal defect or hole in her heart, a duplicated collection system in her kidneys, microphthalmia or an eye abnormality with underdeveloped eyes, a soft cleft palate, a small omphalocele (portion of her intestines formed outside of her body), rocker bottom feet, and bilateral polydactyly or an extra small appendage on her hands. There were statistics that she never should would survive outside of the womb, that she would probably be a small birth weight or possibly stillborn or premature, yet here she is proving us all wrong.

Hayden is getting better and stronger each day. Sheis already 52% in weight and 99% in height. Just today she was taken off her cannula tube oxygen and is now breathing on her own. She is also accepting and digesting my feedings with the assistance of an NG feeding tube. We are so thankful for the teams of doctors and nurses that care  for her day after day and strive to push the boundaries that make her stronger. She continues to make leaps and bounds, so our hope is that she will be able to come home  to us very soon.

We knew this would be a difficult journey and that God would give us the strength during this courageous fight but it is a lot harder to see now that it has begun. Getting discharged from the hospital and not coming home with our little girl each night is heartbreaking. We know there are a lot of hurdles ahead of us, but Hayden is a fierce fighter. Most of our days and nights are spent by her side so we ask for continued thoughts, prayers, and privacy as she continues to fight each day.  Of course, we will do our best to update everyone as time allows by this blog and as she makes her miraculous progress. But we are beyond blessed to have Hayden Elizabeth in our lives and are proud to be her parents and witness her life, journey and what lies ahead for our little miracle!

A New Year and New Beginnings

Peace I leave you; My own peace I now give and bequeath to you. Not as the world gives do I give to you. Do not let your hearts be troubled, neither let them be afraid.

-John 14:27

 

As many of you will probably agree, the holiday season fills you with an array of emotions and mine has been full  of  anticipation, excitement, stress, worry, waiting and filled with many, many questions. That is one of the reasons why I haven't had the chance to post another blog entry. Over the past two weeks we have been anxiously waiting our little baby girl's arrival and are still filled with lots of questions and still, lots of waiting. Every day my phone vibrates with dozens and dozens of text messages and questions from friends and family asking if there is any baby update or any news. We are so thankful for being surrounded by so much love and support but at times it can be overwhelming when we ourselves do not know what is going on or have all the answers.   

I have had two doctor's appointments this past week and we know that as of Thursday, I am 4 cm dilated, 90 effaced, with a bishop score of 7. Although my water has not broken, this past week has been filled with lots of  serious back pain, mild contractions and a few late night phone calls to my Obstetrician. I have been trying everything from warm baths, walking, spicy food, a manicure and pedicure for my pressure points, bouncing on a medicine ball, even working, and nothing seems to work.  We have finally arrived at the answer that she will arrive and make her appearance into the world only when she is good and ready.    

Although I do not have all the answers and the Doctor's do not have all the answers, I know our powerful and almighty God is the only one who knows all the answers. What I do know is that we are exactly 6 days away from our original due date of January 7th.  We have been scheduled for an induction as last resort and the absolute latest date on Wednesday, January 4th. This also happens to be my husband Tim's birthday! Out of all the days that she could arrive, who would have thought that she would be full term, still growing at 39 weeks, and possibly born on the same day as her proud Daddy? Not myself, Tim, our families or any of our Doctor's would have ever predicted this amazing outcome and possibility. She is already defying the odds and surpassing the statistics that were given to us upon her first diagnosis of Trisomy 13 in August.  Even though we are still learning about her diagnosis, she is still teaching us patience and God is still proving to us that he is in control.

As we mark the first day of the New Year, many of you will make New Year's resolutions, and some may be hard to keep. Just before he was to go to the cross, Jesus told the disciples he was leaving them a gift- peace. Although I do not have a resolution for the new year, I do hope and pray for a new year with a new beginning. I pray that God gives us peace whenever obstacles and trials face us throughout the year.  Peace to calm our fears, worries, and anxieties that Tim and I will be great parents and do all things possible with his guidance for our daughter. So I pray in 2017 that God gives you, our loved ones, friends, parents, and fellow Trisomy 13 and 18 parents,  peace throughout the upcoming new year.

Update at 36 Weeks

Peace in the Midst of the Storm   

You will keep in perfect peace those whose minds are steadfast, because they trust in you. Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal.

 

-Isaiah 26:3-4

I woke up out of my norm on Monday as I ended up skipping not only breakfast but also my morning routine and reading my daily devotional. I had been fasting and my first appointment of the day was blood work at my Doctor's office at Southpark. I knew that starting my day off in a rush and frazzled way would probably be what my Monday would ensue as the day continued, and I was right. 

This Monday was another day like so many others have been, full of scheduled Doctor's appointments and updates. What started out with lab work continued in the afternoon with a tour of the Neonatal Intensive Care Unit (NICU) at CMC, followed by another ultrasound, a consult with another Obstetrician, then topped off with a two hour maternity class on "Taking Care of Baby." Why I had scheduled that class on the same day, I don't know. But I know our days are becoming limited and time is precious.

Tim and I like so many times before, met by the fountain and waited for our Genetic Counselor in the Lobby of Levine Children's Hospital. We were able to tour the NICU where Baby Brown will most likely be following labor. We learned the protocol for families, toured the North, South, East and West wings and were able to see the nurseries. Just seeing the precious tiny little babies in the NICU and walking the halls lined with pictures of children that have defied the odds, was so inspiring. It was amazing to see these small miracles surrounded by so much love and support and I couldn't help but think that in just a few short weeks we might be sitting right where those Moms and Dads were.

We started what was our 8th ultrasound and could not wait to see our little angel's face again. We went through our usual marker check with her heart, eyes, face, and measurements to see her growth at this point in gestation. Unfortunately, she was not being cooperative again and wouldn't let the ultrasound technician get a good look at her brain. She was already in position with her head facing very low in my pelvis, resting her head once again on my bladder.  Although there was no change in development in her globes or lenses in her eyes or the size of the VSD in her heart, we were amazed and excited to hear she was growing at a normal weight!  She was weighing in at 5 lb. 8 oz already!  I was so proud that our little bean was far outgrowing and surpassing what everyone thought she would be! She measured at 34 weeks and 4 days, just one week behind her actual gestation and was already overcoming the odds and statistics against her. She was a fighter, just like her mama and daddy :)

Earlier that day, before I met Tim for our appointments,  I opened my daily devotional since I had not had a chance to that morning in hopes that it would ease my anxiety about our upcoming appointments.  It was titled, "Peace in the Midst of the Storm," and was about Jesus and his disciples amidst a storm in the Sea of Galilee. Although the disciples got upset, Jesus never let the storm affect him or get on the inside of him. He kept his heart peaceful, loving, and calm.

Oddly enough throughout all of our appointments I felt an overwhelming sense of peace and comfort. We were introduced on Monday to Dr. Brown. I truly believe she was sent to us at the perfect time when we needed her the most. She consulted us on Baby Brown's development and what she thought about our ultrasound and our plan to schedule an induction. Meeting her was the absolute best part of our day as we had yet to completely click with a Doctor and their opinion. She was warm, knowledgeable, and explained in great detail her opinions and why she was recommending us to not only not induce but to let nature take it's course.  Of course, we completely agreed and have decided to proceed as normal and check to see if I am dilated at week 39.  If I am dilated and my body is getting ready for  baby girl's arrival, then we will go ahead and induce. However, if I am not dilated then we have decided to let me proceed to full term at week 40 before we check again.

I have felt so anxious and unsettled since our last appointment when we talked of induction and a possible C-section. But after meeting Dr. Brown and hearing our new plan I felt much more at peace.  It is funny my daily devotional was about Jesus keeping his heart loving and calm amidst the storm and he said we are to be like him. Maybe that is why I felt calm and at peace this whole time during this process, because I know he would take care of us and guide us in all of our decisions. So no matter what you are going through today or each day, don't let the storms of life get inside you. Keep your heart peaceful, loving and calm and trust me he will take care of your worries.

Things I'm Thankful For

Being Thankful   

Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

-Philippians 4:6-7

Thanksgiving has always been one of my favorite holidays of the year. I love being surrounded by family and friends, stuffed full of foods that we wait all year long to eat, watching football, and of course celebrating what we are thankful for. These past few weeks it has been hard to focus on the what I am thankful for as I have been surrounded by so much loss. I recently lost a close colleague, friend and brother of mine to an unexpected accident and tragedy. It has been hard not to see his smiling face every morning like I have each and everyday for the past nine years. He was one of the first people I told that I was expecting baby girl and one who I shared our diagnosis with in tears. He called himself "Uncle" to our baby girl and could not wait for her arrival.  It breaks my heart that he will not be able to come by the house and meet our precious baby girl when she is born but I know he is in a better place, watching over us and heaven has gained yet another special angel.

It is always a struggle to stay positive and focus on what we are thankful for when we are surrounded by so much darkness and loss. I have several close friends that are struggling with infertility, inability to conceive, and unfortunately miscarriage. Although it is hard to cope with our diagnosis, it is even more difficult to understand why these unfair and horrible losses are happening to such strong and faithful women.  It makes you think why us? What have we done wrong?

The truth is I do not even come close to knowing the answer to these questions. It has been impossible to find the positive in all the negatives and the light when surrounded by the darkness. There are things that we will not understand in this life and I for one, will never have all of the answers. There will be times that we will be disappointed, let down, or even hurt. But what I do know is that you cannot let the darkness intercept your mind and instill fear, doubt, or worry. There is great joy and salvation in the shadows if you know where to look.  So look to Christ Jesus.  Guard your heart and minds in Christ, and he will show you the way.

Choose to give thanks to God not just today, but in everything you do. Thanksgiving can be a time of praise to focus on all the joys in life. I am thankful for being surrounded today by family, friends, and loved ones. I am thankful that God has blessed me with a loving and patient husband and that he has given us a roof over our heads and provided food for us to enjoy today and everyday.  I am thankful for the miracle growing inside of me and for love which grows in my heart every time I feel our precious baby girl move.  I am thankful for the outpouring love and support Tim and I have received during this diagnosis and for the team of doctors God has placed in our lives.

Each day we are given is truly a blessing and for that I am thankful. So I ask, What are you thankful for today?

Jesus lifted up His eyes and said, Father, I thank you that you have heard me.

-John 11:41

Update on Baby Brown

Another Day of Doctor Appointments  

15 My frame was not hidden from you while I was being crafted in a hidden place, knit together in the depths of the earth. 16 In your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

-Psalm 139: 15-16

This afternoon I sat with all of our notes spread in front of me from our many doctor appointments and consultations. Tim and I were asked to read and review a basic birth plan before meeting with palliative care (or one of our many consults for the day).  Except our baby girl's birth plan is anything but basic.  It describes, lists, and goes into detail every possible scenario that could happen while in delivery or following delivery in the hospital.  It is official, I have been listed as a high risk pregnancy and we have been told we need to deliver at Carolinas Medical Center or where all of our many Doctors will be available and on hand. We had originally planned to deliver at CMC-Pineville and after taking a tour and going over a basic birth plan we thought we were prepared and ready to go. But we know just as well as anyone else, plans change. 

Tim and I both went into work on Thursday and worked until lunch until we met each other at CMC for our first appointment of the day.  We both knew it was going to be a long  day as we have like many days before, scheduled all of our consults in a row. It was going to be a day of three appointments in a row, meeting with a social worker, 3 Doctors, touring of the maternity floor, followed by an ultrasound and yet another consult. Although exhausting, this has become our new reality. And so it had begun. It was like a game of musical chairs except there were no chairs, just the next doctor to meet, and it wasn't a game.

We had scheduled to meet a social worker with Palliative Care in the lobby to then be taken to Levine Children's Hospital to meet and conference with the Director of Palliative care and our Neonatologist. It was there Tim and I sat in a conference room and discussed in length the birth plan and procedures for our baby girl. Tim and I had to discuss measures that may need to be taken for our baby girl to not only survive but to thrive.  We discussed an emergency C-section, fetal heart monitoring, chest compressions, feeding tubes, oxygen, intubation, and even tracheotomy and ventilators. We even discussed what we would do if she was stillborn and any keepsakes we would like to keep in her memory.  Although this is not easy and these are heart breaking things to discuss, these are occurrences that Tim and I have been asked to wrap our heads around. We have medically researched every possible scenario and case that we can think of when it comes to Trisomy 13 and our daughter.

After getting through our first difficult appointment, we waited in the NICU for a nurse who specialized in high risk births in labor and delivery.  There we said thank you and goodbye to our Palliative care team and rode the elevator to the 8th floor to tour a labor and delivery room and then a recovery room. Although we discovered I would be recovering on a different floor then the NICU (which is 7th floor, where our baby girl would be taken if needed after birth,) Tim and I felt a little more at ease. Finally we were able to understand and actually know what to expect, and that was where we were going to deliver.  At least this was one thing we could comprehend and know for sure, we knew where to go when the time comes to deliver our baby girl.

Our next stop was meeting our Genetic Counselor and heading to our ultrasound appointment at the Women's Institute.  By this time, two hours had passed since we arrived and we were anxious to learn any possible new developments and updates on our baby girl. Tim and I sat in the waiting room to wait on an experienced ultrasound technician that was going to conduct our 7th ultrasound on Baby Brown. We had become all too familiar with the process. Most new mother and fathers look for their babies cute little hands or feet, or even catch a glimpse of their face. Tim and I hold our breath and pray that each time we see her on the enlarged TV screen that her heart is still beating, her brain is still developing, and her little body is still growing. We pray that all of the prenatal vitamins, supplements, and "super foods" I have been eating are actually giving our daughter a stronger fighting chance.

At this point, at exactly 30 weeks gestation, we learned that her cerebellum in her brain was still underdeveloped. It appeared there was a key hole or space present at the base of the brain in the cerebellum which could effect her ability to breathe on her own at birth. At the ultrasound we also saw that her lenses were still foggy and her globes were underdeveloped. Or as the Doctor said, "There is nothing normal that I see when looking at her eyes." We also learned that she seemed to be sucking in her lip or sucking her thumb and it appeared there was a space inside her mouth. It was inconclusive but she may have an internal cleft palate or gap inside her mouth. From our previous fetal echocardiogram, we already knew she has a moderate to large size hole between her left and right ventricle in her heart. Although she does have this hole, her ventricles have returned to what seem to be normal size and her heart is functioning as it should at this point. So in other words, no new news.

It wasn't until we were finishing our consult with the Doctor that we heard the new news which shocked and surprised us both. Our Fetal Surgeon recommended that we discuss induction at 38 weeks at our next meeting.  Up until this point, we had never discussed induction or C-section as we had understood that they wanted me to deliver as natural as possible  so that baby could continue to grow to full term. No longer was this the case. We now would be scheduled to be induced and at a "high risk" for a possible C-section due to the fetal monitoring of her irregular heartbeat. To me, this meant I might not be able to have a quick recovery and hold our new born daughter and help Tim make the hardest decisions we will have to face in our lives and in hers. Of all the news, this was the hardest to swallow and understand as this was never part of our "plan."

Although this was not part of "our plan" we know that God's plan is not meant to be understood. Many things in life are not meant to be understood as we are simply not strong enough to bear them.  So for now all we do is wait and see and have faith that she will continue to grow, develop and defy the odds. We know she is now 4 pounds and growing on schedule at 30 weeks and 3 days. Our role now is to trust it into his keeping and so that will we do until our last and final ultrasound and Doctor's appointment on December 5th.

Showering Baby Brown

“Hope” is the thing with feathers that perches in the soul and sings the tune without words and never stops at all.

-Emily Dickinson

My sister and best friends threw me the most beautiful shower you have ever seen for our precious little angel. I could never have asked for something more perfect than my baby shower this past weekend. We had so many friends and loves ones come near and far to celebrate and shower our baby girl and we are beyond blessed to have the outpouring love and support of all of these strong women. As each person left they were asked to take home a favor with the message,

“A special candle just for you, to light when Baby makes her debut. As this candle flickers and glows, please send a wish or the prayer below, “Dear Lord, protect this precious child throughout each night and day, bless her as a Child of God, and guide her in your way.”

It is the small things, like this little message that continue to encourage me each and every day and give us hope. Without wishes and prayers we would have long ceased to have the power and energy to deal with this diagnosis and our day to day doubts. It is amazing how you start to cling to any stories of healing in hopes of peace. Tim and I continue to search for those stories but it is the small messages and moments like this weekend that help us find hope. We find hope in reading and sharing other stories of families that have gone through or are dealing with the same diagnosis, and we find hope in knowing that after all of the unknown we will still be surrounded by these strong friends and family Members that will be there to pick us back up no matter what happens.

A special thank you to all these amazing women below for your love, support and prayers and for helping shower a special baby girl and giving her mother HOPE.