My Kid is MY Normal!

Heather is our normal. I am so thankful everyday that Heather is our first born baby. I don't want to compare her to anyone else & the things she's "supposed" to be doing or question why she hasn't done something yet. Heather is setting her own rules her own way & we are beyond elated and proud of every step she takes.

We've had Early Intervention come into our home to help with Physical Therapy, Occupational Therapy, and Speech Therapy. Our new home team to cover these fields has been absolutely amazing. It was so hard leaving good, genuine, gifted, and God-sent angels from Children's Hospital, but we knew that God would still send positive, loving, and encouraging people our way. New is not bad, it's just foreign & the unknown. So, once again, whenever you're scared, in doubt, or unsure:

Proverbs 3: 5-6
 "Trust in the Lord with all your heart
    and lean not on your own understanding;
 in all your ways submit to him,
    and he will make your paths straight."

And HE did!

My kid is MY normal! It's now completely normal for me to strap on Heather's backpack, move her Gtube feeding cord & oxygen hose out of the way for diaper changes, grab onto them to maneuver around the house, take her hearing aid in and out with one hand, and give Heather her meds throughout the day. It's now completely normal to dilate her rectum, change her Gtube dressings, switch out her nasal cannula, and suction her nose and mouth every morning. It's now completely normal that we have to check her oxygen saturations on a pulse ox machine, that we introduce sign language to her as a possible means for her only "verbal" communication, that we use a venting device connected to her Gtube to "burp" her, and that if her Gtube falls out, we just put it back in. It's now completely normal that my entire "Favorite List" on my iPhone is all her medical providers to make accessing them as simple as possible. It's now completely normal that we have appointments almost every week, (we've had one week with ZERO appointments-AMAZING!), we go to Children's Hospital once a month, her pediatrician 3-5 times a month, have Physical Therapy, Occupational/Speech Therapy, nurse interviews, nurses 2-3 times a week, and other medical professionals come into our home.  It's now completely normal for us to pack her stroller, carseat, diaper bag, emergency Gtube kit, extra medical supplies, pumping bag, suction machine, back up oxygen tanks, ambu bag, and plenty of alcohol wipes to wipe down everything in public places. (Public places meaning only the doctors office/hospital for now.) Again, Heather is our normal. Not only is she our normal, but shes OUR perfect! Never in a million years, would I ever wish to switch out our experience with Heather to have what anyone else's version of a "normal" baby would be. Heather has taught us patience, LOVE, trust in GOD, and selflessness. Don't you think if we had more Heather's in the world, more people would be more selfless?

Have you ever spoken to a woman who's husband is in the military and has been deployed for 6-8 months, or travels for a living then said, "My husband has been gone for two days & it's been so hard". Hmmm.....know your audience
Have you ever spoken to a person who has sacrificed their life for our country, has deployed and been away from their family for months to over a year, who has a short day of 12 hours, has to know classified information to keep completely confidential, and knows that he/she is sacrificing their LIFE for our country, but you complain about working too hard......know your audience.
Have you had a child that can crawl, walk, talk, hug, smile, kiss, eat from a breast or bottle, and only have routine appointment check ups, but then wanted to ask a Mom or Dad of a special needs child, "Oh, when did your child begin doing that".......again, know your audience.

I am very genuine when I say that I am elated, happy, and want to share in the excitement of our friend's baby's milestones. However, I also want you to take a moment to sometimes think about the question you want to ask before it so carelessly, at times, can roll off your lips.

In knowing someone with a special need's child, here are a few things that are helpful for other's to know:

 "Retarded" is a word that will never be allowed in our home. I'd personally rather you curse or be disgustingly vulgar than use that word ever around my family. This word was once only used as medical terminology. Unfortunately, it has now been used as slang to offend someone. Society hits once again....it's just every kind of wrong.

"What's wrong with her?/What problems does she have?": How do you feel if you're having a bad day and someone says to you, "Ew, what's your problem?" Now multiply that feeling by a hundred.......you follow me?

"I'm so sorry" is another one. Why? I'm not! My daughter is a miracle! Have you ever witnessed a true miracle? Never once, have I, as her MOTHER ever been sorry!

"I don't understand how you do this"......if your child was in the hospital, would you sit by there side, or enjoy a margarita on Friday night? If your child fell down and cut their knee, you'd be there with band aids, Neosporin, peroxide, cotton balls, a popsicle, and a kiss to make it go away and feel all better. Yes, this is different with Heather, and I hope, but really, I know you would do this too!

Don't be nervous. My child is not contagious. She only causes contagious smiles all the time! Once you hold and look at Heather, you'd never guess all these huge, unique, medical issues are going on inside her tiny, sweet, lovable body. Once you see her, you're Heather hooked!

Be aware of medical & health precautions. Washing your hands is standard for any newborn baby, so it's always just polite to ask if there's anything specific that you may need to be aware of: Taking off shoes, hand sanitizer, not being sick, if you're a smoker, communicate that clearly because major restrictions are involved, etc. Just take a moment for yourself & think about some good questions to ask or be aware of.

No matter what, don't NOT call, NOT email, NOT text, NOT stay in touch. That by far, is the absolute worst. Some may say, "I don't want to bother you", or "I know you're busy,", when really, many times it's just the fact of you being uncomfortable, not knowing what to say, or you feel out of place. Yes, we are busy, everyday we're busy, but so are you!  Hey, there's always Google! Google is the world of the internet. When all else fails, type this into Google: How to help a parent with a special needs child, or what to say to a special needs parent. Ta-da! Instant conversation! Also, Google the Ultimate Dog Tease! It's the best! :)

Yes, our normal for Heather is very cautious! Were you, as a parent, cautious when you interviewed for babysitters, had your first date night away from your baby, interviewed/researched schools for your child, sent your kid off to kindergarden, put your kid on the bus for the first time, etc? Our normal requires a lot of question asking, preventative measures, and advocating for our child.......but, THAT is something we will always have in common with every other parent.

What is our normal? Our normal is YOUR normal too! Our normal that we share with every other parent in this world includes: Loving your child unconditionally, knowing that you would walk through fire for your child time and time again, researching schools, programs, support systems, reaching out to other parents for advice, getting up in the middle of the night when your baby is crying, snuggling around the clock holding your baby knowing there is no other place you would rather be, giving bath time, reading stories, tummy time, and so much more. If you really think about it, we all as parents UNITE in this wonderful world of parenthood. There is nothing else like it! However, we all individually as families also have our own normal too, and this again, is just our own specialized, happy, and unique version of NORMAL!

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.”

January 1st, 2013: Day One......The Beginning of a Miracle!

Most of you know that Thomas & I had a perfect pregnancy. I absolutely LOVED being pregnant! It was the most amazing feeling to know that my body is growing a tiny little baby by the amazing miracle that God gives to women. There is nothing like it, and no way to describe it. It's just wonderful! I had great pre-natal care, a wonderful OB, zero complications, and my doctor never saw any signs that pointed towards anything abnormal.

When delivery came, I had complications in progressing through labor, but that was it. I tried with all my might to do a delivery with no epidural or pain killers. Well, after being induced from low amniotic fluid at 41 weeks, (by the way Pitocin is the DEVIL), being in labor for 20 hours with no pain killers AND Pitocin, being on assisted oxygen for our baby, having intense killer contractions one minute or less apart, with only being dilated to a FOUR, (for those of you that don't know child labor, you have to be dilated to 10, meaning after 20 hours, I wasn't even half way there), I finally looked at Thomas in tears telling him I needed an epidural. Prior to that cry for help, I was walking up and down the hallways doing lunges, squats, using the yoga ball, Thomas kneading my back, and still nothing. Once that epidural came, (Praise The Lord), I slept for two hours and woke up to be a 10! Finally! I pushed our baby girl for 15 minutes, and out she came at 2:30pm on January 1st, 2011.

I was pretty wiped out, and was drugged up still from the epidural, but realized that Heather, our sweet girl I've been aching to meet for nine months, came out on the purple side. And where was her voice? Why wasn't she crying. Ok, I got a kiss from my awesome coach and world's greatest husband Thomas, but now Heather is still not crying. Thomas was looking concerned, and the nurses took Heather back to the NICU to see if she had something trapped in her airway, while Thomas was following behind. I just knew she was fine. Why wouldn't she be. Again, I had the perfect pregnancy, I'm an organic health fanatic, there were zero complications, yes, my daughter was just fine. So, I pretended not to worry while I was being stitched up.  Thomas returned not to much later with a nurse saying that she was having difficulty breathing, but they are working on her, and don't have much more information that that.

I just wanted to see my daughter. After you hold and carry your very first baby for nine months, go through 22 hours of labor, you EXPECT to at least see your child, let alone be able to hold your baby.  I didn't even see her because they rushed her out so fast. What were they not telling me? One hour goes by.........two hours go by.........then a pediatrician comes into our room to "have a talk" with Thomas and me. (We've learned in our 3 months and 5 days NICU hospital experience that "Have a talk" is never a good sign, however, we did not know yet what that meant.)  The doctor told us, "Heather had to be intubated with a breathing tube. She also has some chromosomal abnormalities. We don't know what's wrong, but we just booked a flight for life flight to the Denver Children's Hospital and only one of you can go tonight. Who wants to go?"  WHAT? I just looked at the doctor shocked, not believing a word he had said, and literally thought he walked into the wrong room to deliver this tragic information. If something were wrong with my baby, why wasn't anything seen during my ultrasounds.  I was perplexed, in disbelief, then I looked at Thomas. Thomas was red and in tears. But why? Heather was fine. It took several minutes for this information to filter through my head.  The plane was going to be here in about 4-5 hours, so we called my parents. Words cannot describe how happy I am that they were there.

My parents and sister arrived, and I still had not seen Heather. It wasn't until five hours after delivery that one of our nurses brought photographs of Heather from the NICU, and THAT was the first time I saw my daughter. Just shortly after, a chaplain came in our room to encourage us to baptize Heather before she left on the flight. We agreed and all went into the NICU where she was hooked up to what seemed like everything. Flight for life was already there and hooking Heather up to their machines to transport her to the plane. I was able to hold Heather for ten minutes, do a quick baptism, then I had to say goodbye to my beautiful first born daughter AND my husband.

From that point, I was in a daze. Did I really just have a baby? Where was she? Why wasn't my daughter and my husband with me? Oh, it's because she cannot breathe and needs to fly to a hospital that can help her. Dear God, WHY is this happening?

I felt so lost. Lost doesn't really describe it, neither does depressed. I was in complete shock. THis just wasn't real. What did Heather look like again? I pulled out the photograph.......is that my daughter? I had hardly been able to be with her to really KNOW and REMEMBER what she looked like. And when I get there tomorrow, will Heather know who I am? Will she think I'm a stranger because I haven't been able to be with her? What is happening? Now, to fully "enroll" her into hospital status in Colorado, I found out she needed to be enrolled into our insurance and register her for a social security number the next day. But I need to get on the soonest plane to just GET THERE! I needed help, so I called the wonderful GOD-SENT woman, who was meant to be in our life for this very purpose, our commander's wife. I filled her in, and she said, "We got this!" She came up to the hospital to help me work though the plan on how to get Heather enrolled into our insurance plan, where to be and when tomorrow, and how to do all this before I get on a one-way flight with no planned as of yet return. They did the rest! It's amazing when people of GOD are in a high authoritative position!

Thomas called me that night when he, Heather, and the medical team landed and arrived in Colorado. The admitting process is intense. Doctors, nurses, oxygen, machines, medicines, cords, wires, monitors, and the list could go on forever. Heather had everyone very busy that night. Thomas slept at the bedside in her hospital room never really sleeping, just being interrupted by machine beeps, alarms, doctors & nurses entering and evaluating Heather, and making plans for the next day. Thomas, my best friend, world's best husband, and now phenomenal father, still had not had a chance to hold Heather. It wan't until the next morning, that Thomas finally was able to hold his daughter and feel like a Daddy.

I was discharged immediately in the morning, my Mom drove me right to the squadron to handle the administrative side, and what normally takes over 48 hours to a week to do, our Commander, Director of Operations, and a few other God-sent people had it all squared away to be done in an hour and a half! Amazing! I was so emotionally distraught, and in so much PAIN both emotionally and physically. Gosh, I just had a baby less than 24 hours ago. I kept forgetting that. After delivery, you're supposed to rest and take it easy, Yeah right, I wasn't anywhere close to that.

I went home, packed, and got on the plane with my Mom, (I'm so grateful to my Mom for being there), and flew to Denver. On the plane, I just closed my eyes and prayed and prayed and prayed. Then when I said "Amen", I started over and prayed some more. I still had more time to pray, so I just kept starting up new prayers and really truly talking to God. What else did I have to do? Nothing! I just needed God to help my daughter!

Thomas picked us up from the airport and on the car ride over, he began describing the list of medical professionals and specialists that have been in Heather's room and explained the news they had delivered. I was already falling apart from the first piece of information, and then it just continued to come. The information was never-ending. How could one baby have all these complications? Why does OUR baby have all these complications?

We arrived to the hospital and Thomas strolled me up in a wheelchair to see our daughter, but Thomas turned down a hallway in the NICU that was NOT the hallway leading to Heather's room. He said, "Before we go to Heather's room, there's something I want you to see." There was a hallway with many NICU babies at birth with dozens of severe and life threatening complications. Then next to the picture of the baby at birth was a picture of the same baby three years, five years, seven years, and eleven years later! All these babies were miracles........and that's exactly what Heather would be. I just knew it. I am so happy Thomas made the decision to take me there FIRST!

We went into Heather's room, and I just wanted her in my arms. My little girl was so tiny, looked so helpless, but was the most beautiful sight I had ever seen! She was MY baby! Finally! This is what I was waiting for!  Then Heather was picked up by our nurse, her cords and wires were attached to me for proper placement, instructions were given on what to be cautious of, and she just melted in my arms. It was the perect fit! FINALLY! Yes, finally I was home!

HOME! As a military wife to the best husband I could ever ask for, I've learned that HOME is always with each other. It doesn't matter what state you're in, what kind of house you're in, if your family for friends are nearby, if you know everyone, or if you know no one. Home is with each other! And for the first time, Thomas, Heather, and I were HOME!

A Day in the Life of Heather Faith

So many people have asked what our days our like, so here it is. Heather has slept fairly well throughout the night. Don’t get me wrong, Thomas & I stared at Heather for the first several nights for 30+ minutes making sure she was breathing. Any tiny peep she made, we immediately cadipoltded out of bed, (Miller too)! Heather sleeps in a bassinet in our room and we get up every four hours to switch out her feeds. Heather is currently on continuous feeds, meaning she is fed through her Gtube site continuously 24 hours a day. We ideally would like to be on consolidated feeds, but we just aren’t there medically yet. We are patiently waiting for the go from our PCP. So, we get up every four hours to switch out her feeds, & change her diaper to do our best to prevent future UTI’s. 

In the morning, I get 20 hours worth of feeds pre-measured out, while I’m still pumping milk every three hours for Heather. Whew! Some people are “impressed” and can’t believe I’m still pumping, but how could I not?? It is the ONE SINGLE THING that God has given me the ability to do for my daughter. So many parental privileges have been taken out of our hands and out of our control. Nursing is the one single most thing that is only for a mother and her baby, and that is one thing I will not be able to experience with Heather. It literally tore my heart out of my chest, BUT it was God’s plan. However, God did give me the gift of producing milk abundantly for Heather, and I will do that until the day I can’t. If I can pump and produce for one year, I will pump and store for one year. If I can pump and produce for close to two, than PRAISE GOD for giving me that gift to give the best possible nutrition to my daughter!

Heather has a board of cares that me, Thomas, and our nurse diligently checks off daily. In the morning, Heather needs her Gtube site cleaned and changed out, she needs her rectum dilated with 8mm & 9mm plastic probes, has her feed bag changed out every morning, no longer receives eye drops (YAY!), has her high blood pressure medicine, her profalactic antibiotic, vitamin D, and iron, (all given “orally”, meaning through her Gtube), the normal diaper change, and cute new outfit for the day.

Throughout the day, we do a ton of physical therapy, occupational therapy, and speech therapy. 

Physical Therapy includes: 

• Stretches:

• Neck stretches side to side: Heather is more apt to neck stretches while sleeping
• Shoulders: stretch & depress shoulders down for 20-30 seconds
• Shoulders: See-saw shoulders
• Shoulders: Massage gently
• Scapula Stretch: Pull Heather's arm across body to stretch behind her scapula
• Wrists: stretch out Heather's ulnar deviation for 30-60 seconds
• Wrists: Use Splint
• Elbows: Stretch & extend arms straight in front of Heather & down
• Legs: Stretch & extend legs straight 
• Legs/Hamstrings: Lie Heather on lap, and take her legs to 90 degrees up your torso to stretch her hamstrings
• Feet: Point feet & hold for 20-30 seconds

Exercises: 

• Upper Body:

• Arm Circles: Allow Heather to hold your fingers and circle shoulder joint to pull arm/arms out in front of Heather. Circle Heather's hands up to her mouth & up to her head
• Arm Traction: Straighten Heather's arms downward creating a see-saw motion to encourage traction down
• Baby Crunches: Lie Heather flat on lap & do 10-20 baby crunches 
• Baby Obliques: Roll Heather to a side on your lap with little added support. Encourage  Heather to roll onto her back & to the other side
• Reflex in hands: give Heather things to grab and hold onto.
• Head Control: While sitting Heather in your lap facing you, gently press her occipital bone up to encourage her head to look down slightly.

Tummy Time:

• Tummy time on couch (flat surface)
• On boppy. Not completely flat, but helps & assists in her getting to that flat surface
• Tummy Time on YOU: Place her head on different sides while doing tummy time with her
• Tummy Time on YOU: Firm strong strokes down her spine.

• Weight Bearing Exercises:
• Press Heather's Feet into your torso to encourage her to bear weight.
• Hold Heather up-right to encourage the standing motion

• Tracking with Eyes:
• Heather mostly looks up & slowly tracks side to side. Looking down & centered is the most difficult for her to do. 
• Lie Heather on play mat: turn on music, use rattle, track colorful object with eyes
• Lie Heather on Boppy: encourages her to look DOWN while being snuggled in her boppy. Have her track objects from this upright position.
• Encourage tracking with light-up objects
• Play in Mirror

Occupational Therapy:

• Pacifier: tickle the top of her mouth with the tip of the pacifier. Encourage oral stimulation for 5-10 minutes several times a shift
• Massage: Gently massage Heather's cheeks to encourage rooting & prevent oral aversions

Speech Therapy:

• Sign Language: “Mommy”, “Daddy”, "Ready", & "All Done"
• Read books to stimulate her new hearing aide! 

So, that's a lot! She gets her work out, that's for sure. Heather sometimes is great, and sometimes she's not in the mood. We let Heather be our guide!

Bath-time is her FAVORITE! And the cutest ever! We learned a NICU trick to always swaddle your baby in a thin receiving blanket, then put her in the bath tub! Nurses recommend it for babies up to six months old! Try it!!

At night time, we do a repeat of her cares. We repeat her dilating, Gtube dressing, and high blood pressure medications. So, for most families, this is new foreign information. But this is our normal! It's all we know, and it's our way to spend time and love on Heather. Plus, it's all she knows as well.

We have an oxygen concentrator in our home that converts the oxygen for her to breath in through her nasal cannula. We have 25 foot oxygen cords that go through our entire house, and a back pack with her feeds inside. So, to take Heather around the house, we strap on her back pack, pick up her oxygen cords, and go. Now, it's easy for us.

On our trips to the doctors office, which have been once a week or more, we take, 2-3 portable oxygen tanks, her pulse oxygen machine, her suction machine, diaper bag, extra emergency Gtube supplies, carseat, and stroller. It's true, your purse is really the diaper bag now, which is why I'm so happy my dear friends Shellene Mchale and Ashley Dufek bought me a Coach Diaper Bag! I love my fashionista sistas! 

So, there you go! A life in the day of Heather Faith! She's a rock star & a celebrity in her own life! Yeah, she's kind of amazing!

1st posting since being HOME!

Wow! Where do I begin? I first begin with thanking our amazing heavenly Father for always having a plan & for finally helping me fully trust & know that God is always in control of everything! God knows what we are going to do in the next 60 seconds, He knows all the decision we will make for our entire lives, He knows every person, incident, & plan that we "think" we are making on our own, but He has already made the decision for us.

Thomas & I brought our precious Heather Faith HOME to Colorado Springs on April 5th, 2013. What a journey we have had! From reading the prior post, we have come A LONG WAY! Heather came into our world on January 1st, 2013, was flown to Children's Hospital Colorado the day she was born with her rock star Daddy, I flew out immediately the next day after discharged from delivery, Heather had countless Doctors, Nurses, specialists, case workers, social workers, visit around the clock, (our hospital room was literally a revolving door), we lived in the hospital for three months & five days, we were informed by the Air Force that there was NOTHING medically stable enough for Heather in Minot, ND where our home was, we went though hundreds of hours on the phone to get Thomas transferred to Colorado with the Air Force, we moved from North Dakota, bought a house in Colorado Springs, Thomas started a completely new job, Heather was FINALLY discharged from the hospital, and we started a brand new life with our perfect daughter in a new state, new home, new job, new family, and new everything! Wow!  It seems like a lot, but after going through Heather's journey in the NICU, everything else seemed like water under the bridge. It just wasn't a big deal. Then after moving in, finally feeling like a family, and being in a HOME, I reflected and finally realized that that was ALOT to go through. I never once took time to reflect with what just happened. I went into what us military wives like to call "deployment mode". There's a job, and it has to be done, so GO! That was my mentality in and out when I was stable enough to be in GO mode.

From my first post on January 14th to now, this is what has changed:

• Heather can SEE! When Heather was born her eyes were fully dilated and only pupils. We had no idea what color her eyes were and the Opthalmologist told us that Heather would need eye surgery to see. Heather was on two different types of eye drops for many month, one eye drop going home, and now as of last week, NO EYE DROPS! We had our first follow up appointment from Children's hospital last Thursday, (a 14 hour day for Heather with five appointments.....yes, once again, she's a rock star), and her eye doctor was in awe! Dr. Emily McCourt, who we dearly love, told us that this was a different baby! Heather CAN SEE! Her corneas were completely clear with her pretty brown eyes, & she is a little far-sighted, but will not need glasses. Her left eye has a tendency to be lazy, which we will watch, and patch the opposite eye if needed to make the lazy one work harder on being straight, but only if needed.
• Heather's cleft palate is the same, and we are not repairing it. Her cleft palate is not a life threatening issue, and we are only opting for necessary surgeries. She has never eaten by mouth for two reasons. One being her cleft palate, and also because she has strange anatomy with her esophagus & trachea. We don't know if she fully can or cannot swallow, but a major concern is her aspirating liquid into her lungs which can be fatal. We have a swallow specialist coming to the hospital tomorrow to start nipple training from a special cleft palate bottle. 
• Heather had Gtube surgery & Nissan Surgery on Valentine's Day. A Gtube is also known as a "second mouth". I never knew how common Gtubes were! Everyone has a Gtube, it's the new accessory of the year! :) The Gtube is a feeding tube that is surgically placed through her stomach. The Nissan is taking a part of her stomach lining, and wrapping it around her esophagus so she physically cannot throw up. This keeps her food down in her tummy. Most kids with Gtube surgeries also get a Nissan. If she did not get the Nissan, she would not keep food down, meaning she could not gain weight, which is obviously a part of survival. 
• Heather's respiratory system has been through the ringer. Heather was on the ventilator three times. The ventilator is the 2nd highest form of assisted breathing, meaning a machine was breathing for her. She was ventilated at birth, again her first week of life from respiratory failure, (she went code blue in the hospital, the number one fear in the NICU), and a third time for her surgery. Heather went from the ventilator to SiPap, to CPAP, to High Flow, to Low Flow, to home on 1/8 of a liter. The altitude ended up playing a toll on her being home, so she is now bumped up to 1/4 liter all the time at home, and 1/2 liter when we ride to the doctors office. She hates the car seat & extra stress takes a toll on her respiratory system. That little bump in oxygen prevents her from desatting on her oxygen. We like to always set her up for success!
• Her heart! Oh, her heart! God is a miracle worker! Heather was born with three holes in her heart: PDA, ASD, and VSD. Her PDA closed at 5 weeks old! AMAZING! Her ASD was very large, which is a lift threatening issue. Heart surgery is our very very LAST option for her, but is something we are avoiding until absolutely necessary. Heart surgery for Heather would mean completely stopping her heart, hooking her up to a machine to make her heart pump for her, repairing the holes, then recovering. It is a surgery that Doctors do not know if she will come out of alive. I cannot even begin to describe the emotions that went along with this conversation, and for the sake of time in typing, I just cannot go back to that place. BUT, God has made the big holes smaller! Her ASD is now moderate, and her VSD is small! This is one of the biggest blessings & we continue to pray that these holes continue to shrink! Heather is on high blood pressure medicine twice a day, administered through her Gtube, and we hope her dosages can go down over time.
• Hernia: Heather has a morgagni hernia. It's centrally located with her liver protruding through her diaphragm and pressing up into her lung cavity. It surprisingly is not effecting her breathing. This will be surgically repaired laproscopically when needed. 
• Kidneys: Heather was "born with one kidney". Just kidding! When she was one week away from being discharged, the doctors FOUND her other kidney. It was tucked away not in the correct location and is half the size of her left kidney. We do not know the functionality of it, and will test it when needed. She has grade 3-4 reflux of the kidneys, (5 being the highest), meaning urine goes back up to the kidneys, rather than down in the bladder. She is on a profalactic antibiotic to prevent UTI's and other infections! It is CRUCIAL that her normal sized kidney stays working efficiently. If something were to regress for her kidney, a transplant is the pathway we need to go in. For now, her kidney is AMAZING!
• Ears: Heather's right ear is dysplastic, meaning not fully formed, with no ear canal. Her left ear appears normal, with a very small ear canal. She failed all three hearing tests. Last week, we finally got her psychedelic hot pink, neon orange, and neon yellow hearing aid. I'm jealous, it's pretty awesome! Since then, she's been focusing on Mommy & Daddy more, and we truly believe she is finally hearing some sound!!!!!
• Spine: Heather's spine is longer than normal & she has a tethered cord. For now, we are simply watching for disfunction of her legs, bladder, and colon. She is a diaper champ, so no problems right now, and she is a dancer at heart! Take that Neuro Surgery!
• The "plumbing": Heather has a rectal-vaginal fistula with an imperfiated anus. In English, her urine and stool come out the same exit. Doctors originally said Heather needed a colostomy or a rectal pull through surgery. However, she goes potty like a champ. As long as she has good urine and stool output, no surgery is needed. Whoo hoo!
• Heather has had extensive physical therapy, occupational therapy, and a little bit of speech therapy. I'll explain that at a later time. 

So, needless to say, Heather has been through more in 4 months, than some of us will ever go through in a lifetime! She is my hero! I've never met anyone as strong as my daughter! If she can literally FIGHT for her life, the least Thomas and I can do is advocate for her. What we are doing is easy compared to what she has gone through and will continue to go through!

This verse has come into my life time and time again over the past 4 months. It was the most amazing reminder that God had Heather planned all along, perfectly made for Thomas and me. 

Psalm 139: 13-16 reads:

For you created my inmost being;
    you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

I now live by this verse! Everything has happened according to God's perfect plan, and the very new & changed life we live is our perfect life. This is our new normal & our purpose was to be here to be Heather's parents. God picked Heather for us & us for Heather. And what God does is ALWAYS GOOD! 

We had an amazing nurse in Minot, North Dakota say something to us after we were delivered the difficult news about Heather that will always and forever stick with me. She said, "I had a special needs child, and I was blessed to be her mother for 26 years. Right now, at this very second, you need to swallow your pride, and know that you cannot do everything on your own. You have to accept help when offered. Don't think about it, just do it."
And that's what we HAD to do. Thomas and I have always been the helpers for other people, so for us to switch our roles was so difficult, but the more time we took, the more difficult it would be. We accepted that advice, applied it, but most importantly, we TRUSTED GOD'S PLAN. We had to surrender. We just had to. We had no other choice, and once we did that, life was so much better, "easier", and enjoyable. 

No matter what God gives you in life, it's always good. Will you trust Him or fight Him? He gives us that choice! I'm so thankful God gave us the right people at the right time to say the right things to make us know & trust in Him!

I know this has been a lengthy first blog, but this is new to me, and there is SO MUCH that has happened in the last four month. I know I cannot back track to document everything, but I will do my best in my "free time" to allow each and everyone of you to follow our Heather Faith's journey!

I love you, I thank you for all your prayers, and most of all I thank you for the kind words so many of you have sent our way. For those who know me well, my love language is "Words of Affirmation". You emailing me, texting me, calling me, is the best support and therapy you could give me and making me feel your love! Thank you so much! 

Our baby announcement from January 14th, 2013

On January 1st, 2013, we gave birth to our beautiful little miracle Heather Faith. Heather was born 5 lbs 2 oz, at 2:30pm and we were beyond excited to welcome our sweet girl into our lives.

We kept her name a sweet surprise, as many of you know. I now can reveal to you the importance of her beautiful name!

Heather Faith is named after two extremely important people in our lives. Our sweet little Heather is named after Heather Stolle, who has been my life role model. I met her when I was 13 years old at her dance studio, Heather Stolle's School of Dance, and had my very first dance lesson from her. I was so excited, took class, and was horrible. However, Big Heather saw potential in me, and offered free dance to me if she could train me to be her assistant. Let me remind you, this is the first dance class I ever took in my life. From there, God made magic happen. We had an amazing employee/employer relationship, which evolved into her molding me into a dancer, instructor, wife, mother, and most of all, Christian. Heather Stolle is who I always looked up to & who I wanted to one day be just like! I've had this name saved for the last seven years & it was my dream to one day, if I had a little girl, to name her Heather!

Faith & JC Schilling are one of our amazing Air Force couples that were instantly part of our family. We met them in Pensacola, but our friendship built more in Oklahoma. The best thing about the Air Force is the people we meet and Faith and JC are our two special gems. Thomas & JC will say "I Love You" at the end of their phone calls, and Faith and I will cook 24 hours non stop if you let us. We love each other, we "get" each other, and we were just all meant to be best friends! This is where we chose her middle name, and also chose them as our Godparents for our sweet angel!

Immediately after delivery, the hospital staff rushed our sweet angel to the NICU to be intubated. I wasn't able to see her for about five hours after delivery, which left my heart aching in agony wanting to hold and bond with the beautiful child I carried for nine months.

The pediatrician came in to inform us that Heather had many abnormalities, but her breathing was the most crucial at this point. Heather took her very first flight with her Daddy to Children's Hospital in Aurora, Colorado. I was discharged the following morning and booked a one way flight out here about 24 hours later.

When we arrived, several doctors, surgeons, specialists, case workers, social workers, and nurses were already on our team. Heather is very popular here! After many tests, waiting, doctors, and tears, we received the chromosome testing back. Heather Faith's prognosis is Complete Trisomy 22, meaning she has three copies of the 22nd chromosome instead of the normal two copies. There have been about 20 reported medical cases in the last 20 years with the average life expectancy of 3 days of life. Complete Trisomy 22 is a very common reason for miscarriages in the first trimester & it's very rare that a baby is able to be held full term in pregnancy. In addition, it's rare for babies to live past the third or fourth day of life, and today Heather is 13 DAYS OLD! She has already beaten the odds above & beyond and is truly a MIRACLE BABY!

Heather is currently on a ventilator, has a feeding tube leading directly to her intestine to bypass the stomach preventing any type of reflux, has copocephaly, (enlarged ventricles in her brain), an absent corpus collosum (the "bridge" the links the left and right sides of the brain), glaucoma, cleft palate, a dysplastic ear, shortened neck, three holes in her heart (ASD, VSD, & PDA), sub-epiglottal stenosis (narrowing), a morgagni hernia, hyperplastic fingernails, sandal gap toes, missing right kidney, and a recto-vaginal fistula.

Before we are able to come home, Heather has to be slowly taken off her ventilator to breathe on her own, find out the most efficient way to feed her, heart surgery, hernia surgery, and surgery to reconstruct her anus or have a colostomy performed.

We had what we thought was the perfect pregnancy. I enjoyed every second of my pregnancy and we regret absolutely nothing. Of course we had thoughts run through our minds, "What did we do wrong?" & "Why us?", but now we know. We know God chose US to take care of this perfect & beautiful little princess. We love her more than we ever could have imagined, and if Heather has proven to be a fighter up to this point, her Daddy & I will fight with all our power, strength, & FAITH to bring our daughter home! We know it's a long journey, and a patient one, but we have never felt so right about anything in our entire lives! We decided long before we knew Heather's condition that we would do anything & everything we could to fight for our beautiful daughter as long as God was willing.

We know the statistics, we know what the doctors have told us, but each day is a blessing from God, and YOUR PRAYERS have made the biggest impact in our lives! We have never felt the power of prayer & FAITH as much as we have in the past 12 days. It's truly been miraculous & uplifting beyond words!

We are so appreciative & overwhelmed by our care packages, cards, letters, gifts, and amazing generosity of The Heather Faith Project including donations from our 23rd Bomber Squadron, River Rats, and Air Warrior Courage Foundation. A special thank you goes out to Tricia Lohmeyer & Stacey Morrison for creating The Heather Faith Project! We know we will have added costs with plane tickets back & forth for check ups and surgeries, supplies, and home care, so it literally makes our hearts swell in gratefulness from all your love, support, generosity, and prayers! Our hearts are just overwhelmed & we know that this is 100% a GOD THING! I don't know how people do not believe in God, especially after witnessing Heather's story!

Thank you thank you thank you from the bottom of our hearts & every ounce of our being from our families, friends, dance family, Air Force family, new friends, and some supporters we have not even met yet. You have lifted our spirits and given us more strength than you could possibly imagine!

WE LOVE YOU & THANK YOU FOR SUPPORTING OUR PERFECTLY MADE HEATHER FAITH!