Our Family at Children's Hospital Colorado

It's so hard to describe our stay in the hospital with Heather, but the best way I can possibly describe it as is like this, "No one ever wants to be in the hospital with their child, but if they do, I pray that they have our exact experience."

That's the only way I can describe it. Yes, we received the most horrific news about our precious daughter, yes we had to witness Heather going through surgery, yes we had a million people constantly filter though our room delivering negative information, she went through the ringer on oxygen treatments back and forth, Heather fought infections, sicknesses, had a platelet transfusion, dozens of blood draws every week, tests upon tests performed, MRI's, EKG's, EEG's, ECHOS, X-rays, photo-therapy, countless medications, and there was a lack of hope, the most amount of tears Thomas and I have ever cried, and prayers upon prayers on our knees.

 However, there was a love that built among the doctors, nurses, and specialists for our daughter, there were medical professionals that helped advocate for us, we had a phenomenal ethics committee stand by our side, Heather was snuggled so much every moment of every day by us, and if we had to step away, our nurses loved her as if she were their own child. We opened our hearts to the staff of Children's Hospital to cry for help, hope, & patience. And they listened. We explained to them that we have a loving God and we told them as parents, "WE CAN DO THIS!" and "Please just let us try!" They said it would be a rough road, and they don't know how long the road will be for Heather, but they agreed and went to work. NO! God went to work! These medical professionals allowed GOD to work miracles through their talented hands to SAVE OUR DAUGHTER'S LIFE! That's truly what has happened here. 

Based off statistics, Heather was never supposed to be carried throughout our entire pregnancy, she has not meant to be born alive, and she was not supposed to live passed 3-4 days of life. Look! Look at our sweet girl now! She has proven the world wrong, and is living proof that we have an AMAZING GOD!

We had five lead Neo-Natal Doctors, four amazing fellows, several loving Neo Nurse Practitioners, eleven ROCK STAR NURSES WHO STOLE OUR HEARTS, a Cardiologist, Ear/Nose/Throat Doctor, Cleft Palate Specialist, Audiologist, Ophthalmologist,  Surgery Team, Neuro Surgery Doctor, Urologist, Physical Therapist, Speech Therapist, Occupational Therapist, Case Worker, Social Worker, our own assigned Chaplain, all on Heather's team. These are the people we saw everyday, multiple times a day, or a few times a week, or once a week. That's a lot of doctors filtering through our life for Heather everyday for three months and five days!

As we prayed for God to heal Heather, we continued to have FAITH and trust in HIM that He would take care of all three of us as a family. As each week progressed, our hope strengthened by the love, support, and prayers we had from our family and friends around the world. Literally, around the world! Not only did we have support from the people who loved us, we grew a whole entirely new family at Children's Hospital. 
Our doctors were amazing, intelligent, and the best in the country, but we LOVED when they would enter Heather's room in SHOCK! That happened quite often. Complete Trisomy 22 is so rare, and as each day progressed, I believe their faith in God did as well. We had a geneticist come visit Heather from Salt Lake City, Utah who had been a geneticist for over 40 years. This intelligent man who "has seen it all" only witnessed one baby in his entire medical career with Complete Trisomy 22..........and that baby only lived for a few minutes. That's his one and only experience with this rare syndrome. So, shocked is what our doctors constantly were. And every time I saw that expression in their faces, I constantly said to myself, "Miracles CAN happen!" 

Our nurses......this is so hard to find a beginning point for how to describe our nurses. I will say this my entire life, but nurses are the HEART of Children's Hospital. Nurses probably get the least amount of recognition, the most screaming, angry, and heart  broken parents, very few thank you's for working their 12 hour shifts at the bedside of their patients, are dismissed frequently, have to walk on eggshells at times in the rooms they are in charge of, and are mostly spoken to by parents who are afraid of losing their child. These parents, including Thomas and me, are a hot mess, disoriented, angry, depressed, and terrified everyday they are in the hospital. Nurses see life and death everyday, respond to Code Blues, and have to come onto their shifts at times discovering that they lost one of their patients. How do they do this job? 

Our nurses: Sara, Sarah, Debbie, Eli, Carly, Diana, Desiree, Joanna, Sandra, Hellea, and Beth were our guardian angels. Truly, I mean that with every ounce of my being. They were God-sent angels that were an answer to our prayers without us ever praying for them to be sent. These nurses loved Heather. I feel like they loved Heather as if she was their own daughter. Each one of these nurses left a huge impression on our hearts and will always be considered our family! They watched Heather's every move, noticed concerning signs immediately, spent 12 continuous hours a day with her, and KNEW Heather! These nurses did so many amazing things for Heather and us. Anything and everything from making us sweet Valentine's Day Cards from Heather, making sweet inspiring quotes for us to hang on our wall, cards, home-made blankets, sweet going away gifts, PRAYERS......(that they aren't supposed to do), many many shoulders to cry on, mini counseling sessions all the time, introducing "Beads of Courage" to us, stories of hope and inspiration, educating us on Heather's meds & all her specialized cares, decorating her crib, fun conversations to take our minds off things, hand washing her clothes for her when she had a diaper explosion, brought fun interactive toys, mirrors, and stimulating things to enhance Heather's senses, and so much more. They became, what we like to believe, as our FRIENDS! Maybe that was just their job, maybe not, but whatever their job description was when they signed up for this position, I can guarantee they went above and beyond what their requirements were for our family of three!  

I knew Heather's nurse schedule by heart! I knew who would be there on what day shift or night shift. There is nothing we could ever possibly do to ever say "Thank You" enough for what they had done for us, but we sure tried. For those of you who know me well, I use food and words as my love language. So, any attempt of "bribery" or sign of gratitude we could show, we tried with all our heart. It was only a small fraction on what they had done for Heather, but I will spend the rest of my life praising these nurses for the love they showed Heather. Our nurses were MOTHERS! All the time! They were another motherly figure to Heather, and also to me and Thomas. We had them watching over our family 24 hours a day. Yes, they were all our guardian angels. 

Next time you meet a nurse, HUG THEM! If not for you, then for Heather! Spread the love of how amazing these job titles are! It's not even the job titles that deliver themselves to patients and patient's families, its the extra love they give, the eyes wide open, glued to the monitors attention they show, and the countless questions they answer. It's the motherly instinct that kicks in to show families comfort, it's the advocates they also become to the doctors, and it's the way they become a part of your family! Again, next time you see a nurse, please hug them for Heather, and share her story! It's a miraculous, grow you closer to God, kind of story.

Yes, the staff at Children's Hospital were some of the most amazing people we have ever met! We feel fortunate to have been transferred here to Colorado to be nearby this  location to continue to visit for appointments and to show OUR HOSPITAL FAMILY Heather's growth in her thriving life!

Oh, and all these amazing medical professionals not only were amazing during our stay, but they were amazing on the day we came home, 24 hours after we had been home, 48 hours after we'd been home, they were in touch though text, email, and phone calls. No, not to set up appointments, just to say "Hi" and to see how Heather was doing! They asked if we had any questions, concerns, but mostly wanted to hear all about our little miracle! The miracle that they all got to witness! Yes, that's right, they all knew Heather was a miracle, and it's not everyday or maybe never in their life time that doctors witness a miracle! We have had visitors from nurses, my favorite lactation consultant ever, and plan for many more visitors in the future here in our home! Amazing! This was our staff.........this was our staff that became a part of our family!

Family.....what is family? Family is the Mom & Dad that raised you, the brothers and sisters you grew up with, the friends that blessed your life so preciously, the family we've made in the Air Force, the family we've made in Dance, the family that helped save our daughter's life, and everyone that has touched our lives and has always been there for us. That's our huge & growing family!  We are ALL Brothers & Sisters in Christ!

Matthew 12:48-50

But he replied to the man who told him, “Who is my mother, and who are my brothers?” And stretching out his hand toward his disciples, he said, “Here are my mother and my brothers! For whoever does the will of my Father in heaven is my brother and sister and mother.”