Hope for Hayden

Darkest of Days

Be merciful to me, O LORD, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief.

-Psalm 31:9

As Trisomy parents we worry about what tomorrow will bring as tomorrow is never promised. You are grateful for each day God brings and each moment that you are able to spend with your child. We fear not if we will be back in the hospital but when and what will be the outcome of the next visit. With only one week of being back at home we had no idea this would be the outcome and we would be right back in the Pediatric ICU.

One of my worst fears came true as I had to call 911 and my daughter had to be rushed to the Emergency Room at Levine Children's Hospital. Throughout this journey we have had a lot of firsts but my first time calling 911 and riding in an ambulance I did not want to be one of them.  Hayden was having difficulty breathing as she was breathing heavily, had very low oxygen levels, and started to change color even with increased oxygen flow at home. 

Six days later we are still in the Pediatric ICU and Hayden is still fighting the good fight. She is showing us she is small but mighty, fragile but fierce, and that she is a true miracle at almost 5 months of age. We are so incredibly proud of her tenacity and strength and she is teaching Tim and I each day how to be strong and courageous just like her.  We lift our precious daughter up in prayer as we ask him to comfort us in his loving arms and give us strength to overcome. Amen.

Goodbye Hospital, Hello Home Sweet Home

Home with Hayden

Prayer: For blessings here and those in store, we give thanks now and evermore.

We are celebrating a new start to our journey as we are finally home from the hospital!  I could not imagine a more perfect belated Mother's Day present than bringing our precious baby girl home! Although Hayden is home with double the medical equipment, triple the medication, on oxygen, and with nursing assistance, we truly believe Hayden will continue to flourish.

Thank you to all of those who visited us, sent food or well wishes while in the hospital, and those that have prayed for us each day throughout this journey. We are so grateful to have you in our lives and witness the power of prayer. 

A special thank you to all of the courageous nurses and doctors in the PICU and Progressive Care that fought for our daughter Hayden. We truly will never be able to thank you enough and are thankful to have met you, known you, and grateful that God placed you in our path. You always say we hope not to see you again but you will forever be in our thoughts and prayers.

We know that we will be faced with new struggles and although it is overwhelming we hope to get Hayden settled in soon. We  are just beyond happy to say Hayden is finally home sweet home but we are anxious to put those 47 days in the hospital behind us and looking forward to brighter days ahead.   Hayden's journey does not stop here as this is just the beginning, a new chapter, and hopefully the start of her miracle that we all are fortunate enough just to witness.  

Hope for Hayden-Trisomy Strong, Small but Mighty, Fragile but Fierce

Happy Mother's Day

Hope for Hayden

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

-Jeremiah 29:11

These last few days I have struggled with writing another blog entry as each and everyday I have tried to write something  but failed. We have been told over and over by family members and visitors that coming to visit us they get a glimpse of what we endure each day but nobody will ever truly understand how hard these past 45 days have been for Hayden, Tim and I.  These past 6 weeks have been the hardest days of our lives filled with discouragement, despair,  anxiety, pain, anger, and loneliness. It has been a true struggle trying to find a balance of writing about our experience and being hopeful but also being honest. We believe that everyday is a blessing, we are thankful for the Good Lord's mercy and healing hand, and know that he will never give us more than we can handle, but some days we can't help but ask how much Lord do you think we can handle?  How much do we have to endure? Are we strong enough?


It has been 9 months since our world was rocked and we found out that not only were we having a daughter but that she also was diagnosed with Trisomy 13. We continue to strive and learn a little more each and every day about not only Hayden but Trisomy 13.  Many of the congenital malformations or birth defects associated with Trisomy 13 we have discovered Hayden does have as she has spent 2 months of her life so far in the hospital. But she continues to defy the odds at 4 months of age with approximately 80% of children diagnosed with Trisomy 13 pass away within their first month of life.  Hayden's courageous story has already touched so many lives and she continues to raise awareness for Trisomy 13 and show Tim and I how to believe and fight for each breath we are given.   

So as we celebrate Mother's Day, I cannot help but think about all of the fellow Mom's with children in the hospital. Being a Mom is the hardest job on Earth but being a Mom with a child in the hospital, a special needs child, or a child with Trisomy, you have no idea the depth of your strength, tenacity, and resourcefulness.   You see things you never could imagine. You treasure things most wouldn't think twice about. You don't think a milestone is just a milestone, it is a miracle. You become a nurse, an advocate, an educator, a specialist, a therapist, and most of all a Mom to your wonderful miracle and child fighting for their life.

I will be honest it is very difficult to write this and know that I will be celebrating my first Mother's Day with my daughter in the hospital. You think of Mother's Day as a day to celebrate, a day filled with joy and brunch plans.  So although it is not how I envisioned, I want to celebrate all the amazing Moms out there.  Thank you to my amazing Mother for her selflessness, strength, support, and love. It is because of you and Dad that I understand what love truly means. Thank you to all the other Moms who have banded together to show Hayden, Tim, and I what it truly means to be a Mother, Grandmother and Mother-in-Law. And thank you Hayden for showing me how to fight, how to be your advocate, and most importantly letting me experience for the first time what it means to be a Mom.  Happy Mother's Day to all the Moms and we love you more than you ever will know!

Hayden Progressive Care Update

Slow and Steady

Lord, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief.

-Psalm 143:1

As we approach almost one month of Hayden being in the hospital it is very difficult not to feel discouraged. It is hard to fathom that 7 weeks of Hayden's 16 week old time spent on this Earth has been in the confines of Levine Children's Hospital. Tim and I have faced a whirlwind of emotions from sadness and despair to anger and discouragement to relief and hope. Life in the hospital has not been easy nor is it ever going to get any easier.  Days are spent in the confines of Hayden's hospital room full of updates and visits from her therapists, specialists, and physicians while nights are filled with little sleep, lots of crying, and constant noise and alarms. Although we remain uplifted and positive it has always been challenging and continues to be the most challenging days throughout this entire journey.

Since our arrival last Monday to Progressive Care, Hayden's progress has been slow and at times it seems as though we are moving backwards.  She left the ICU on high flow oxygen but since our arrival her oxygen levels have increased to 50% and 4 liters when they should be decreasing.  Our main goal has been to wean her diuretics, sedatives, medications, and oxygen to a place that we feel comfortable she is ready to come home. But since our arrival her oxygen levels have increased instead of decreased, diuretics have decreased, but her sedatives and medications are right back when we first began the wean (if not more) in the PICU. 

We know this journey is going to be a long one and we have to take it slow and steady but when does discouragement turn into losing hope? We are surrounded by children who face the same outlook as Hayden and unfortunately there are a few that have lived most of their lives in the hospital. We have heard the moans and cries of Hayden's neighbors, seen the despair in other's faces, and watched as other parents have experienced loss.   With a foreseeable end not in sight, it is hard not to let our discouragement and despair turn into losing hope.  

For me the hope is in knowing that we are surrounded by so much support, love, and hope from friends, family, churches, neighbors, and friends of friends that share our story.  It is knowing that Hayden's story has already touched so many lives and continues to raise awareness for Trisomy 13.  It is knowing that these trials that Tim and I are facing in our lives right now were never God's original intent. Our lives and Hayden's life was never intended to be full of discomfort, discouragement or any pain and suffering. So we must persist in prayer and continue to hope because that is all there is to do.

We graciously ask those who are out there that continue to pray for us and Hayden each and everyday to pray for the Lord to help ease Hayden's pain and discomfort, help Tim and I not to be discouraged, and help guide our Physician and Nurses to find the right answers for treatment for our daughter. We may feel lost now but we know that God will help mend and restore our brokenness. For Hayden this is not her final destination, it is just the beginning of her story, and at the end of the day I am just an activist, fighter for Trisomy awareness, and proud Mother to the most unbelievably remarkable precious little miracle.

Easter Update

Give Thanks to the Lord for he is Good

But God demonstrated his own love for us in this; while we were still sinners, Christ died for us. -Romans 5:8

Amazing does not even begin to describe the progress Hayden has had over the past two days.  I think everyone here has finally realized that she is special and unique and ultimately the one in control. Hayden no longer has a fever, her blot clot has resolved, new blood, urine and lung cultures are all coming back negative, glucose and hemoglobin levels are great, and she weighed in at 11 lbs 2 oz. We are so overwhelmed with joy of her progress and the power of prayer!

Yesterday for the first time in 11 days, Tim and I both were able to finally hold Hayden in our arms again. She was intubated, on a ventilator, and sedated for 11 days in addition to the other two following surgery.  Hayden was extubated on Wednesday and we all held our breath as we watched as she began to breath without the ventilator. She is still on high flow oxygen with a cannula in her nose but has taken huge strides and continues to defy the odds. She has overcome each and every obstacle thrown her way including a blood transfusion from low hemoglobin, finding another blood clot in her neck from her central line, and testing positive for a bacterial rod infection in her bronch culture. 

Although it's Day 18 of being in the PICU and we have several more days and obstacles ahead of us, we still are celebrating this Easter Sunday as proud parents of our little fighter! We have been blessed with the most amazing Team of Physicians, Specialists, Therapists and Nurses during this journey. They have made such a negative experience that much more positive, made our days a little brighter, and have made us feel at home. Which, technically it has been our home these past few weeks.

Today we have begun to discuss Hayden's progress and possibly moving to another floor out of the Intensive Care Unit and into Progressive Care. A week ago Tim and I never thought that would be possible but now we are one step closer to taking our sweet little angel home again.  So this Easter as we celebrate the resurrection of our Lord Jesus Christ, we also are celebrating the amazing acts of kindness, compassion, and love that he has demonstrated to not only Hayden but to us all. His love endures forever and we are so blessed to witness this miracle.

A special thank you to all of those who donate to Levine Children's hospital as all the kids in the PICU today were brought these Easter baskets just to help brighten their day. Even in the hospital, the Easter Bunny came to visit. Happy Easter!

Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead. -1 Peter 1:3

Hospital Update on Hayden

She is Small but Mighty, She is Fierce

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.

Deuteronomy 31:8

Last Wednesday when Hayden turned 12 weeks old, she was admitted to Levine Children's Hospital for surgery to have a G-tube placed in her stomach and her omphalocele removed.  Tim and I were hoping that this surgery would help get her the proper nutrition she needed and minimize her pain. But we realized last week just how fragile our little girl is, as what should have been a routine surgery has turned into our biggest fear.

Our day was not off to a great start when we arrived at Levine Children's Hospital to find that her room was not yet available and then arriving in her room to find no crib, bed, chair or feeding pump. The room was completely empty and nobody was ready for our arrival. That night before her surgery Hayden started spitting up and vomiting all of her feeds and became very irritable with a slight fever. After discontinuing her feeds, several lab orders were placed for bloodwork as well as to start an IV for fluids so she would not become dehydrated. I watched my fragile baby girl get poked 12 times in one day for blood work.  It took 6 nurses to get an IV placed (as she is a hard stick) and later to find out that some of her blood work was "misplaced and lost" by one of the lab technicians.   When the lab technician came to retrieve more bloodwork (that had already been done)  I completely lost my patience. How could such a small fragile child be stuck with a needle with no pain medicine or numbing 12 times?  Was that really necessary and why did my daughter have to suffer from someone's mistake?  Finally after not being fed for 6 hours we started an IV.  I thought nothing could be worse than this night but little did I know it was just the start of many in the hospital.  

After a long night with little sleep we awoke to discuss with her Pediatric Surgeon what could possibly be causing her vomiting and discuss possible scenarios. After an upper GI X-ray we realized that she had a malrotation in her upper GI tract that could have been causing some of her reflux and vomiting.  The upper GI x-ray also showed that Hayden had an enlarged liver and descended appendix that seemed to separate her large and small intestines. So what should have been routine turned into a discussion with her Pediatric Surgeon on what procedure we may have to proceed with for surgery as a G-tube was now off the table.

Hayden's surgery continued to get pushed back throughout the day with her continued complications as it was originally scheduled for Thursday at 11 am and she did not go into the operation room until 4:30 p.m. At the time she had not had any feeds since 8 pm the night before. Tim and I were both on edge as at that time we did not know what procedure would take place in the OR as it may change depending on what they saw once in surgery.  Fortunately, he did not have to make an incision and open her up as her intestines seemed to function properly and showed no signs of being blocked or coiled. Hayden ended up having a GJ tube placed instead of a G-tube due to her severe reflux. A GJ tube is a feeding tube with two ports, where one is in her stomach and the other the small intestine. She also had her omphalocele removed with little to no trouble. Because she had been sick and they had a difficult time intubating her and starting a Central IV line, she was sent to the Pediatric ICU.

Since we have arrived in the PICU it has been one obstacle after another.  Hayden was extubated on Saturday and did remarkably well on the high flow oxygen until Sunday night. Hayden has these "episodes or fits" as I call it where she gets worked up and holds her breath causing her heart rate and sats or oxygen saturations to drop. After having episodes all day Tim and I finally went to sleep at the hospital around 2:00 a.m. At 4:30 a.m. we get a knock on the door down the hall from her room from the nurse saying you need to come quick your daughter is having trouble breathing. We ran into her room to find her room filled with nurses, residents, doctors, and almost the entire PICU floor. Her heart rate had dropped in the 30s and her sats dropped to 2. They were bagging her when we walked in or manually ventilating her with oxygen and the Attending Physician told us that she would have to intubated again. We watched for thirty minutes as our daughter was getting oxygen as we waited for the anesthesologists to arrive to intubate her. Due to her underdeveloped chin and jaw and very small airway she is very difficult to intubate so 3 anesthesologists came down to intubate. We watched from the window of her room as we saw our daughter fail to get intubated the first time and once again have her heart rate drop below 40 and sats plumment. I hope other parents never have to experience this seeing their child turn blue and lose all life in their limbs as they struggle to fight to stay alive. Although it was BY Far the worst moment of my life, we were fortunate enough to have the best Staff in the world there explaining to us what was happening and fighting to keep our daughter alive. Hayden was intubated successfully on the second try thanks to 3 anesthesologists and our amazing team of PICU nurses and Physicians. We have been so blessed with the level of care the PICU Staff has provided for our daughter and the compassion and patience they have had with us as parents.

As I write this today Hayden is still intubated but on lowered 30% oxygen at a rate of 12. With the help of breathing trials, we are striving to get her extubated and off oxygen. But since Sunday she has had multiple obstacles that continue to try to bring her down and push her back including pulmonary hypertension, a blood clot found in her right leg, a fever of 102.7, an inflamed central IV line (which was taken out along with her IV line in her foot and head), low hemoglobin and glucose levels, over 1.5 liters of fluid on her little body and bacterial rods found on her BAL culture from her lungs and breathing tube.  

Hayden has spent 1 month of her 3 months of life in the hospital and still continues to fight in the Pediatric ICU for over a week now. It has been the hardest challenge to overcome yet, trying to understand why our precious little daughter is being put through so much pain? How much can a child endure? I know she is a fighter and she is fierce but how long should we expect her to fight? Everyday we continue to pray and hope that she will get better yet the next day a new obstacle presents itself that she has to overcome and it is so discouraging. I have yet to leave the hospital for a week now as it is impossible for me to leave Hayden's side. I pray every night that God eases her pain and if I could I would gladly take that pain from her.

Tim and I pray that she chooses to continue the fight but it is heartbreaking to see her in so much pain and having to fight this fight on her own. For us we are just two parents so unbelievably proud and blessed to experience 3 wonderful months so far with our little angel. Everyday she continues to amaze us and overwhelm us with love.  She is small but mighty, she is fierce, she is our light, our love, the center of our world, and our little miracle. We are truly thankful for each and everyday she gives us and she continues to inspire us with her tenacity and strength. Thank you to all of our friends, family, supporters, believers, and prayer warriors that have helped uplift and encourage us through this journey. We appreciate your support, positive thoughts, and prayers and continue to ask for prayers and strength for us and the PICU Doctors and Team watching over Hayden as each day continues to be a battle and one that we pray we will win and overcome.

Hayden Update

God Helps the Helpless    

God gives grace (favor and blessing) to the humble.

-1 Peter 5:5

 

Last Wednesday was a tough day to say the least. Not only did Hayden get three shots at her two month checkup but she also went to visit her Pediatric Surgeon. So to say it was a long exhausting day is an understatement. Most babies tend to cry and get fussy at night and into the evening hours or when they are tired, hungry, or need to be changed.  Hayden is not "most babies." She tends to cry in pain at all hours, sometimes every hour and a half  and it is very difficult at times to figure out why. Not only is she not getting any sleep at 10 weeks but we aren't either. It seems like sleep is so far in the distant future and it is heartbreaking to see your child in pain and not able to figure out how to ease her pain, and make it all better.


Not only have we consulted numerous Specialists but we recently consulted her Gastrointestinal Doctor to figure out the problem. We have switched her supplemented formula, switched mom to a dairy-free and soy-free diet (which by the way is absolutely miserable), increased her feeds, and increased her antibiotics and medicines. Now we are just trying to figure out the process of elimination and take it day by day.

Last week we also took Hayden to see her Pediatric Surgeon and after consulting with him and her Gastrointestinal Doctor they both recommended scheduling Hayden for surgery to insert a Gastrostomy Tube or G-Tube. Right now Hayden has an NG tube and is fed on a pump over the course of an hour every three hours. She is constantly pulling her NG tube out during feeds, coughing, choking, and it seems to always irritate her throat (and Mom and Dad are both tired of putting it back in). With the G-tube surgery a tube would be inserted directly through her abdomen into her stomach. Although she will have to be readmitted to the hospital,we are hoping this will help her receive proper nutrition and ease her pain.


Tim and I have gone back and forth in our decision regarding Hayden's surgery as she will be put under anesthesia and admitted back to Levine Children's Hospital for at least two days.  She will be monitored one day prior to the surgery and at least one day following depending on her stats and how she does coming off anesthesia.  Most of this time will be spent learning how to care for Hayden with cleaning the area so that it does not get infected or clogged and learning how to insert the tube if it falls out of place. We are still waiting for her abdominal and pelvic ultrasound and to hear if she has been cleared by her Cardiologist for surgery, but have officially scheduled her surgery for March 30th. At this same time we plan on having her omphalocele removed as well.

We truly hope this will make a difference and continue to ask for prayers and guidance for our daughter.   I believe it takes faith to get through anything in life especially the low days when you think I am never going to get through this. If it were not for our faith and the love and support we have received, Tim and I would not be able to get through this last week or these past few months. God does not help those who help themselves but rather helps those who cannot help themselves. He helps the helpless, those who believe, and those who are dependent upon him and his word. All we can do now is believe that he will help our precious daughter and pray that Tim and I  are making the right decision for Hayden.

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.