Faith's Special Heart and Esophagus Story
***Trigger Warning*** Sensitive Topics
We are pleased to introduce you to our incredibly amazing and very special baby girl, Faith.
Our hope in sharing her journey is to inspire more love, patience and understanding of what life is like to raise a special needs child.
Faith was born in October of 2017 and Dad and I were very scared and nervous for her arrival...We were catapulted into a world of frightening unknowns, many teams of different doctors, nurses and having to learn medical terminology at a speed which felt like 100 miles an hour.
People often ask how I am able to deal with so much; and I describe it as living an emotional nightmare that we fought through each day to find some kind of understanding and peace from all of the stress and chaotic confusion. Faith was born with two rare congenital defect conditions affecting her heart, and esophagus. The heart condition is called Shones Syndrome, which has resulted in Faith having 4 heart surgeries to date, with more expected soon. Faith was also born with a condition called, Esophageal Atresia; and to date, has required 17 additional surgeries trying to provide her with some level of esophagus function.
In the beginning I felt completely shattered, alone and grieving as if she had died, or was going to die in front of me. My body and heart physically felt pained when I was holding her. All I wanted to do was provide her with love and comfort, take away or at least ease her pain in some way. I dreamed of breastfeeding and holding her like a normal mom and newborn baby should. I was so angry and jealous of other moms with healthy kids. My son was born healthy and because of this, I knew what Faith and I were missing, and it broke my heart every second of each day and even now it still hurts allot. All our family continues to struggle with many issues related to the changes our lives took. We are living in almost complete isolation to keep our daughter from getting sick. This medical mom life feels like I am running a marathon 24 hrs a day. When I am around other mums, they do not even realize we exist, or have any idea of the pain we are in. I must keep my distance and to be honest, most parents do not understand the magnitude of what we are living with. Our situation either scares them away, or they have no idea how to relate and end up pulling away. I miss being social and carefree. We are hopeful that our lives will improve as our daughter's health improves ❤️
Faith was born with a condition called Esophageal Atresia. This genetic condition causes a child to be born unable to swallow. Faith has what is called Type A Long Gap Pure Atresia and was born with only a 9cm blind ending esophagus pouch. As soon as she was born the doctors had to immediately provide oxygen and insert a suction tube called a replogle. This suction tube sat in the bottom of her esophagus pouch to keep her from choking on her saliva. I could probably write another blog on the awful suction experience, but I will spare you the details 😉
The NICU Stay...
Our NICU stay was 3 months while we waited for Faith to be ready for the esophagus attachment surgery. The suction tube in her mouth served two purposes; keep her from aspirating on saliva and the other was to try and stretch the pouch in length. Faith had to have a gastronomy tube (g-tube) surgically put in her stomach so she could be fed. Our daughter was forced to have high volumes of formula fed via the g-tube with the hopes of stretching her stomach in preparation for surgery; The day of the surgery was not what we had pictured would happen. Faith had already gone through her 1st heart surgery by this time, so I thought the connecting of her esophagus would not be too bad, but boy was I ever wrong. I was completely unaware how deeply this surgery was going to change and effect me, yet I was so naive at this point still and was not prepared for what happened. On the 8th hour of the 10-hour surgery she coded and her heart stopped. Thankfully she was saved by her amazing surgeon and our amazing creator. Words can never express how this event fed into my deepest fears that were already causing me severe panic attacks. After I spent a great deal of time grieving, I was able to fully embrace my baby girl. My love grew stronger by the day and I learned to accept that she may not be long for this world and to cherish every moment.
The Attachment Surgery...
The hardest part of our journey and the one we were least prepared for! Faith was to be kept in a coma like state for a minimum of 7 days. This was to allow her esophagus to heal and not tear open. When I was first told this information pre-surgery, I thought it sounded relatively simple and almost peaceful, like she would not feel the hardest part of her recovery.
What actually happened was not at all what I expected... All nursing staff and doctors were on the highest alert that I had ever witnessed to date, you just could feel the anxiety and uncertainty among the highest level of professionals. I was made aware that her heart stopped on the 8th hour of surgery but was told they were not sure why it happened; I believe this is what caused everyone to be tense and worried. I was in complete shock sitting on a tiny cot in the corner of the room; paralyzed by fear that our beautiful little baby might die right in front of me. Joel and I spoke about who was going to sleep at the hospital and I said I would. I was too scared to leave her and there was no room for him to sleep. Faith’s heart rate was at number of 206 and this was indicating that she was in terrible PAIN. I remember feeling utterly heartbroken and devastated that she was paralyzed and in extreme pain. Her tiny body was thrashing and if I tried to comfort her in any capacity, it made her more upset. The process of getting these issues sorted out can be painfully slow to say the least...All medication changes must be approved and ordered by the doctor, then ordered to pharmacy, and then sent up through a tube, and then verified by the head nurse, and then finally given to the patient; honestly (it was awful just typing all that out).
I recall feeling so incredibly angry that she was suffering in extreme pain. I wanted to scream and cry but in the hospital world it's a bad idea to fight with the person(s) who are keeping your child alive. It is an experience I pray that nobody ever has to go through! Apart of my soul was broken so deeply at that very moment, and I knew I would never be the same or fully recover from this experience. Faith and I had been through what felt like hell and back several times, yet this was the most difficult journey we were on.
After a couple of hours things settled down a bit. Faith’s heart rate was down to the 180’s-190’s (which is still EXTREMELY high for a 3-month-old baby). I felt like I could try and catch a little rest. I awoke to the loudest alarm bells that gave my heart a massive scare, I jumped out of bed and seen that her heart rate was at 40 and she was pure white. All I could feel was that she was leaving us and that her tiny body just could not take all of the drainage chest tubes, breathing tube, large cuts in her stomach and ribs, and a lung that kept collapsing. The nurse panicked and started doing chest compressions and started screaming for help; this was so unbelievably scary!!! My body could not move, and my heart was racing and pounding in my throat so hard that I thought I was going to die. Many doctors rushed in tending to Faith and tried to comfort me; saying that she would be okay... Needless to say, I did not sleep that night and left first thing in the morning to clear my head. I needed to process my emotions and find my inner strength that was used to relying on; however, this time was different. I felt so alone and scared.
I ended up visiting her later that day in the PICU and I was thinking that her pain should be better managed by this time and sadly, it was not. I did manage to find a way to provide comfort to her by placing my hand under her bum, and gently and rhythmically massaging her. The nurses suggested I try and hold her, and I agreed; I thought to myself, of course she will want me to hold her, but I was wrong. Faith screamed out in tremendous pain; and I burst out crying and begged them to put her back in bed. This experience did cause PTSD for me and I ended up not being able to go back and see her for 6 days. I received the phone call that they were planning on removing the breathing tube and to come be with her. I was now thinking the hard part was behind us. I walked into my baby not breathing well on her own at all. She was put on oxygen and thankfully this helped her. As things calmed down a little, I felt a strong desire to sing to my sweet angel; it was as if I was trying to heal us both in that moment. Singing has always provided me with strength and an outlet to sort my emotions. Faith loves music and already has some spectacular dance moves. She dances even if you just sing or drop a beat :) This makes me smile until it hurts and fills my heart with pure joy!
The Final Esophagus chapter...
Faith was sent up to unit 2 on the respiratory team where she could recover. Due to the high doses of drugs needed to control her pain, she did experience 3 weeks of withdraw symptoms. I wish someone at the hospital could have prepared me for what this looks likes. She basically cried for 3 weeks straight while she was slowly being weened off each day. This does not sound that hard, but the most challenging aspect was having the nurses, doctors and students all needing to check on her progress and manage any issues that came up. I was emotionally drained because I would just get her to sleep after rocking her for hours, and then they would wake her up. Drug withdraw causes restlessness on a scale that is like a pin dropping. The day she was fully weened was amazing, like someone lifted a dark cloud off our family.
Faith did end up spending 4 months recovering on this unit and we experienced many, many issues, and challenges along the way. Her esophagus connection is very tight and scars down often; Faith does require frequent surgeries to open and stretch the site for her to eat soft pureed foods. We are not at the point yet where she can eat like a normal child, but its manageable with allot of patience. We are forever grateful to our family and friends for all their love, kindness, and support. So many doctors, nurses and volunteers worked tirelessly to give Faith a better quality of life.
We also need to acknowledge the Ronald McDonald House Charity!!! The RMH lovingly provided a home away from home for 201 days for our family. Ronald McDonald is absolutely critical to making it through life with a medically complex child. They provided us a lovely room that felt like a hotel, filled with nice supplies to feel like home. They have volunteers who cook fantastic meals for both brunch and dinner, everyday for 50 people. These lovely Calgarian's made my day! I enjoyed thanking them and spending time explaining just how special they are; Most volunteers were not fully aware of the impact they were having, and they were happy to learn more about us and our stories. The house also has bakers that make some AMAZING treats too; I hate that I ended up gaining 40 lbs, but it's how I got through some of the really hard days. So, if anyone wants to send me a personal trainer, I would love it! JK
We have had and continue to have very special people put directly in our paths, and at the exact time when we need it most. I am not an overly religious person, but after what we experienced, I am certain that there is a higher power helping and loving us. May God bless you all and know that you are not alone.
Thank you for taking the time to read about our family - We really do need the help and support of our community to survive and thrive!