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!