The New Stuff

Yes, I know, I've been pleasantly hounded by family & friends to do an update. I'm so sorry for the delay/inconsistency with writing. There are times that I simply want to just be. And for the past 6-8 weeks, that's exactly what we've been able to do. Heather has had minimal doctor appointments through her PCP, very few unexpected appointments for weakened health, and fewer blood draws & tests over the past 1-2 months. It's been incredible! Heather is so unbelievably sensitive, but that is when we are so grateful for the many doctors that are a part of our Team Heather Faith that watch her so closely. 

• Heather is starting to "outgrow" her baby baby phase. She has been sleeping a little better at night! HALLELUJAH! I know you Mommy's out there know how amazing that feeling is! She's not sleeping through the night, but we've had handfuls of 5-7 hour stretches! Sleep, oh, how I have missed you! Heather has been more alert, playful, and talkative during the day and takes fewer naps. However, she still is just like her Momma and is just grouchy as can be in the morning. (My mom always told me I would have payback one day.) :)
• Just last week, we received the MOST AMAZING NEWS! While we were all in the NICU, Heather failed three hearing exams. Her hearing is the least of her medical complications, but for some reason, Thomas & I were convinced from the beginning that her ability to hear would not be a question. We just "knew" she could hear. When Thomas had to fly to CHCO with Heather, leaving me behind, he just kept talking & singing to her. He wanted her to know she was not alone & Daddy was right beside her. When Audiology came in, many many months ago, we assumed they just needed to "check a box". Never were we concerned about Heather having a lack of hearing. The audiology team clearly knew how upsetting this would be for us, and it was. With all the other severe & complex medical issues she had, why was this more upsetting than other issues? Knowing that your baby may not ever be able to hear the sound of their Mommy or Daddy's voice literally ripped our hearts out of our chests. Especially for Thomas. BUT, this past Thursday was a GREAT DAY! Heather had a hearing test, for the first time since her hearing aid was made. Sometimes, after having severe hearing loss with no added stimulation, (AKA hearing aids), the inner ear nerve will "go to sleep", and it may never wake back up. So, we knew that was a possibility, and that her hearing aid could simply be an extra accessory/super diva earring. Heather sat on my lap facing one audiologist. The other audiologist was with Thomas outside the booth. Once sounds started being administered, Heather immediately responded! Our amazing audiologist had a praise of joy with a slight glisten in her eye, and I just lost it. Tears and tears of joy were pouring from my eyes. It was the most amazing thing.......and we DIDN'T VIDEO TAPE IT! UGH!! It's ok, that memory will play back over and over in my mind forever!
• Heather has been free of UTI's since the summer!
• We've been going for walks with Miller almost everyday! Heather loves it!
• Heather has been having much stronger head control, focusing her eyes on objects more clearly, reaching for objects, having a stronger grip, (also on my hair), happier tummy time, and improving each week with Occupational Therapy & Physical Therapy. Our goals are to get her to sit up on her own, have full head control, get her to roll from side to side, & turn her head completely from side to side
• Heather's "No" game: As Heather grows, we will learn what her cognitive & developmental abilities are. We have a wonderful additional therapy from the school of the deaf and blind that comes twice a month to our home. She's amazing and we love her. She plays lots of interesting sounds for Heather, does sign language with her, and so much more. One day, Heather was kind of "tuning out" of therapy. It was past her nap time, and when she gets tired, she starts closing her eyes and shaking her head "no". Her therapist did the sign we do for Heather, and said, "Heather's turn", and Heather continued to shake her head. Then she said, "Denise's turn", and Denise started shaking her head, "no". This continued slowly at first, but now, this is Heather's new game! It's amazing AND we truly believe she understands it. I will do the sign for Mommy, and say, "Mommy's turn", and switch to do "Heather's turn", and her eyes are so lit up and so excited to play this little game she created! Yes, our daughter is learning!!!!!
• Heather is STILL RETCHING! Ugh! It's literally the most exhausting & absolute saddest thing. BUT, we are NOT giving up. For one, we have to pray.....alot! We are also trying different medications to see which her body will respond to, and are hopeful that some solid food will help weigh down the nutrition in her stomach.
• SOLID FOOD! Yes, you heard right, SOLID FOOD! Heather is completely Gtube dependent, (a few requests were made to explain some Gtube talk). Her first and only surgery she has had so far has been Gtube & Nissen surgery. A Gtube is a feeding tube that is surgically placed inside her stomach. We have a feeding bag we pour breastmilk into, and it runs by a pump. It has a little back pack, that we can also put her portable oxygen into when we are out. She is no longer on continuous feeds, meaning she is not fed 24 hours a day. She eats in 1 hour & 15 minute increments with an hour & 45 minutes break. Our goal is to get to an hour, and maybe even 30-45 minutes, but that will take many many months. Heather's stomach is abnormally small, so it takes a long time to very SLOWLY stretch out her tummy. We've done well so far! She's a "turtle", slow and steady, but always progressing.
• Heather has been on little bits of avocado Vita-mixed with breast milk once a day. This is also an extremely slow process. Heather in on her 2nd full week of the avocado mixture, and after one more week we can try another food. Normally, it's every 2-3 days for a new food for most babies, but since this is Heather's first "taste" of solid food, and her digestive tract doesn't work as efficiently as ours does, we have to go much slower to see if she can even handle it. After one more week, we can start adding new foods in every 5-ish days. This is a dream to me! I finally get to "cook" for my little girl!
• Our little princess is 12 pounds! Again, she's a "turtle", slow & steady, but always progressing. Her length is only 22 inches, and that's remaining almost stagnant. Babies with genetic disorders grow extremely slow, and will never be the same size as other babies. Thomas just says that it's easier for him to pack her up in his pocket and take her everywhere! Silly Daddy!
• Ok, here's some of the scary stuff......we are looking at another surgery in February-ish time frame. Heather has a fistula down under. Basically her two exits are practically combined. Surgery is a necessity for two reasons:  prevention of UTI's, to preserve her one good kidney, and to allow her to pass larger & more solid stool's as she grows. We thought we had two options, but now it's looking more like one. One surgery is called a rectal pull-through, and it's exactly as it sounds. It just creates more separation between the two exits. The other is colostomy........which is what my Grandma had, and what surgeons are pushing us towards for safety. This is especially hard for me, because it's our little girl being hooked up to one more thing. Right now, she's in diapers, just like every other baby. I would much rather have Heather have the colostomy because it's safer, but it's still a hard concept for me to grasp. If, more like, when, she has this surgery, it's likely that it will be a double surgery to repair her morgagni hernia. Her diaphragm is protruding into her liver, which is pushing up into her lung cavity, but praise God, that it is NOT effecting her breathing. I have no idea how! Please pray for guidance for Thomas and me, and the surgeons, for success, and acceptance. This one is hard, mostly because it's our daughter going under for another, potentially two surgeries. 
• Since Heather is on a constant diuretic, (a medication to keep the fluid off her lungs), it makes her kidneys drop in sodium & chloride retention. Low sodium is a risk for seizure activity, and low chloride is a risk because it does not allow the diuretic to work efficiently, making it harder for Heather to breathe. The solution: Heather has to get blood work drawn every 2-3 weeks & is now on a sodium chloride supplement twice a day. Simple, not invasive, just an extra step.
• RETCHING! Please please please pray for the retching to subside! It's awful for all three of us! 

As I back track throughout the past few months, I think this is everything from a medical standpoint. Our girl continues to amaze us everyday. She is so sweet, cuddly, and most of the time, is a very happy baby. We just love her! It's so hard to look back just nine months ago, and see it just being the two of us. It seems like another lifetime ago. Being a parent is the most wonderful and most challenging job there is. It's amazing how you automatically put everything on hold and everything aside for this tiny and precious being. She has stolen our heart time and time and time again!

"I walk slowly, but I never walk backwards."

-Abraham Lincoln

Christmas at the NICU

This is our Christmas wish this year! If you feel inclined to give, PLEASE do!

With the help of God, Children's Hospital Colorado saved our daughter's life. We literally experienced a little bit of heaven on earth at this amazing place we like to call "Home Sweet Home". Our family will forever want to pay it forward, and this Christmas we hope to do just that. 


On December 25th, 2013, many families will be on their knees begging God to spare their child's life, they will be in complete shock and depression in discovering their child's prognosis, or they will see their little baby earn their wings in heaven. The NICU is the happiest and darkest place we have ever been a part of. God seems hidden at times. However, this Christmas we hope to brighten lives. 


Thomas, Heather, and I have everything we could ever want. We have a loving God, we have each other, and we have our daughter! God spared our daughter's life and that's all we CONTINUE to ask for! 

Our wish this Christmas is to feed the medical staff at Children's Hospital & give a gift to each family in the NICU. We are so beyond grateful and humbled by the constant questions of, "What does Heather need? Does she need clothes, books, toys? What can I buy her?" Thank you for your generosity for our daughter, but she has so much and so do we. If you feel inclined to give, please give in Heather's honor to the people that were by her side twenty four hours a day, seven days a week for three months and five days. We want them to feel uplifted, motivated, and well-nourished on Christmas day when they are away from their own families to try and save others. We will provide a healthy, delicious lunch to all the medical workers, and a gift for all the NICU families. 
Thank you for your support in helping us make this Christmas the very best yet. Any extra or unused funds will be used to purchase restaurant & cafeteria gift cards as an additional gift to the families in the NICU. 


http://www.gofundme.com/Christmas-at-the-NICU

Heather News: At Almost 8 Months Old!

Well, it's been quite the month. I haven't written a blog in quite some time due to our excessive & unexpected busyness. Heather has been in and out of the doctors office for three weeks due to a wet cough, crackled lungs, low grade temperature, and high respiratory rate. Since she's on oxygen, and has two holes in her heart, it's a big deal. There was an imbalance between her high blood pressure medicine, oxygen rates, and diuretic. If one is off, everything becomes extremely unbalanced. Due to her two to three appointments at her PCP's office each week, constant blood draws, and blood pressure checks, Heather's cardiologist from Children's Hospital wanted her admitted for a few days to get everything under control. So, back we went. Being at the hospital for three days is MUCH better than non stop unexpected appointments. It literally consumed up three weeks and was exhausting for all of us. Here are the updates and high lights on our sweet girl from her most recent Children's Hospital visit along with updates over the past  4-6 weeks.

 Heather's VSD in her heart closed!!!! This is HUGE news! She was born with 3 holes in her heart & now she's down to two. Her ASD is still present & is extremely large, which has been one of our biggest concerns for her life.  Doctors say only surgery can correct this......we say surgery and GOD!
Heather has been wearing an eye patch over her right eye to help her lazy left eye strengthen. This will help her eyes work together as a team. Every time she wears her patch, we sing, "Don't go chasin' waterfalls. Please stick to the rivers and the lakes that you're used to." from TLC.....get it? Left eye!
Heather sure takes after her Mommy with her persistence! Heather has been pulling out her nasal cannula with her right hand, left hand, both hands, using her blanket or bedding to weasel out of it, etc. She also discovered her hearing aid and how to remove that too! Stinker? Oh, yes she is!
Heather has been doing so well taking minuet amounts of breast milk by MOUTH! We don't have the doctor's confirmation yet, but we think she can swallow! That is SO HUGE! She goes in for a feeding clinic next month to be evaluated by a Speech Therapist, Dietician, Occupational Therapist, and Pediatrician to see if she can swallow, and also for these medical professionals to look at her mouth and throat anatomy.
Heather has had her 3rd & 4th UTI in the past few months. This is alarming because if she gets one more UTI before she is one year old, she will require surgery of her ureters in her kidney. Since she only has one functioning kidney, it's crucial to preserve that kidney's life & keep it free of infections. It's also a possibility that she may have a second surgery done at the same time; either a colostomy or a rectal pull through surgery.  We pray for no surgeries, but it they are needed, we pray for successful surgeries.
She had an Orthopedic appointment recently for the very first time, and all bones  and structural function is normal! Hallelujah!
Heather has done SO WELL with Occupational Therapy! We have a phenomenal OT that we like to call the "Baby Whisperer". She's been doing this for over 30 years and you can tell! Because of her help, patience, and persistence, Heather has been using her right hand and arm more freely, (when they were both pretty close to being immobile), now likes tummy time, has increased flexibility in her shoulders & has been able to raise her arms a little higher, has stronger oral stimulation, reaches & grips items with more strength, and so much more!
She still has zero reflex in her legs.....which we were prepared for, but are still saddened by. This means that we are going down the path of it being extremely likely that she will not be able to walk. Again, this is brutal news, but it's something we prepared for. Our girl will rise up and be the winner of every wheelchair race! :)
 Heather's retching has still continued. Ugh, this has just been awful. Retching looks like dry heaving. It's as if she's trying to spit up, but she can't because of her nissen surgery. We still have no idea how to help this and most doctors say that kids with G tubes & nissens just eventually grow out of it. If that's the case, prayers that she can grow out of it SOON!

Heather's little personality has been shining through! Oh my goodness, it's so much fun! She is such a happy girl! I love her baby stages, but she's been more interactive, and that is just the best!  Her eyes just radiate her emotions and love to us. It's amazing how her eyes look so deeply into our hearts and those eyes......oh, just those eyes melt our hearts. She is showing signs of coo-ing, smiling, using both her hands simultaneously, reaching out and grabbing things, and rolling to one side.  She no longer needs the bath net in her tub, she kicks and kicks and kicks her legs for days, (but still no reflex of pushing), loves her hair played with (like every other girl in the world), loves her play mat, being read to, the discovery of her tongue, and having Mommy or Daddy hold her just always makes everything better. She loves us and we sure love her! She's Daddy's little "princess" and "sweet pea" and Mommy's "pretty girl" and "monkey". She even has several patterns of cries.....including the fake cry! Stinker!

Heather is coming up on EIGHT MONTHS OLD! Wow! What a journey it has been, and an amazing one at that! We love her so much and are so thankful to God for giving her to us & letting us keep her. Do you ever think about that with your children? It's a miracle all on its own for women to have the gift of pregnancy, as so many women in the world suffer from fertility issues. It's a miracle to be able to carry your child full term, as many babies are born premature. It's a miracle that your baby is born alive, as still births are something not uncommon. And last but not least, it's a MIRACLE that God has given us the gift of LIFE! LIFE? Yes, LIFE! That's what we wanted for our child! When we learned about her complications, we didn't start praying that she would be able to see, hear, learn, walk, or talk. We prayed that she would stay alive! And yes, God heard our prayers and answered them!

1 Samuel 1:27-28
"For this child I prayed, and The Lord has granted me my petition that I made to Him. Therefore I have lent her to The Lord. As long as she lives, she is lent to The Lord."

SIX MONTHS OLD!

Wow! Looking back from the very beginning of our journey up to this point, has again, been nothing short of a miracle. On Heather’s sixth day of life, we received the devastating news that changed our lives forever. Our doctors sat us down to tell us her prognosis of Complete Trisomy 22......and the average life expectancy was four days of life......but again, she was SIX days old! 

Yesterday, July 1st, 2013, was our daughter’s six month birthday! What an amazing milestone for our perfect & precious daughter. I never knew this kind of love existed. Yes, I am madly, 100%, over the moon, head over heels, in love with the most amazing man in the entire world and seem to just fall more and more in love with him every single day. However, the love of being a parent, a mother, is a much different love. It is so unbelievably unconditional and is a bond that can never be broken. A mother! I was blessed by God to be Heather’s Mommy! It’s such a humbling feeling, and I still think, “Wow, God chose Thomas & me to be her parents”. How did we get so lucky, really how? She has been the most amazing gift we have ever received and has taught us more than we ever could have imagined. I feel like I’m learning all over again, only with a different set of eyes, and in the way I want to learn.  A way of learning that is so much more through the eyes of God. 

Our daughter at six days old was given an “end of life” expectation. Maybe days, maybe a week. That’s what the doctors gave to us. The first several weeks in the hospital were the most terrifying days I have ever lived. I was not capable of knowing anything else around me, could barely communicate properly or effectively, and cried non stop every day. Those days were rough. Hmmm....rough? No, those days were heart wrenching & I was terrified to walk out of her room thinking, “What if she’s not here when I get back.” Thomas and I were zombies. I didn’t care how anyone else felt, what people said, or anything about anyone. I only cared about my daughter and for her survival. 

We were beyond blessed to have so many amazing people in our life to truly be there for us. God had blessed us with true genuine God-sent people to be there for us emotionally, those who knew what was the perfect thing to say, those who took every life stress off our shoulders, and those who showered us with positive, uplifting, and encouraging prayers and words of affirmation. Those words, above everything else, were exactly what we needed. Although we said, “Please don’t contact us for the time being”, those who knew us well KNEW we needed to be contacted and loved through emails, texts, voicemails, and loving words to keep us uplifted! It’s amazing when you say “No, we don’t need this,” and all the right people come stampeding in so delicately to love us the way we needed to be loved. 

February 1st, 2013, Heather turned ONE MONTH OLD! Doctors were shocked! Jaws were dropped! They stood close to our sides and fought every moment of everyday for our girl. Do we love our hospital family? No, we are in love with our hospital family. God worked through their hands to save our daughter! Yes, SAVE!!!!

Heather’s two month birthday came.....than three month....than at three months and five days we went HOME for the very first time! Four months, five months, and now at half a year of life, here is our girl! On July 10th, we will have been home for the exact amount of time as we were in the hospital! Another amazing milestone! Heather is home, she’s happy, she’s GROWING, she’s THRIVING, she’s smiling, she’s cooing, she’s on all breast milk, and most of all, she’s ours! No, I take that back....she is God’s! I prayed and  prayed on my knees, that if God let us keep her we would be the very best parents. I prayed that He let us TRY! I prayed that God would instill in Thomas and me strength, wisdom, and encourage us. We need encouragement to know how to advocate and say “NO” when needed & “YES” for our daughter’s well being. I prayed that good people would come into our life to encourage us and teach us the best ways on how to care for our daughter. That’s when we met, Marlena, with March of Dimes. Marlena, had another miracle story with her daughter, and she gave us her play by play on their version of their “normal life”. Wow! It was some of the most helpful and useful advice we had been given. The prayers continued to be answered and God continued to bless our beautiful family of three! 

SIX MONTHS OLD! SIX MONTHS? My heart is overflowing with joy! There is no one anywhere that could steal that joy from me. But why would someone steal that joy? I don’t know, but people try. Our Heather is just utterly amazing to Thomas and me every single day. She can light up our faces at the drop of a hat, make you forget all that is wrong with the world, and she has helped us focus on God being #1, your spouse being #2, and your children being #3. Everything else comes after that. That is still so very hard sometimes, but again, she has taught us the bible’s version of priorities! Six months old.....how can someone so young teach us so much? How can someone who hasn’t began to talk, or may never be able to talk speak so clearly to us? How? I don’t know, but our daughter has been the strongest walking model of Christ I have ever witnessed. She is HIS miracle! I will say that now and forever! 

In six months, our daughter proved the world wrong and God right! In six months, our daughter taught the doctors that medicine can only go so far. In six months, Thomas and I have learned everything all over again. In six months, our daughter has made believers out of non believers. In six months, she has made us happier than we ever could have imagined. In six months, she has beaten all the odds and survived! She is HIS miracle and here is to the next SIX MONTHS!

Learning How to Pray

I found myself wanting to pray this morning, wanting to re-devote my mornings to God again, and trying to figure out how to pray. How to pray? Just fold your hands, speak to God, and say Amen, right? There are so many wrong ways to pray. Crazy, I know. I remember learning about this a very long time ago, so I did a little research and this is what I found:

http://www.godsholyspirit.com/christian_desk/How_to_pray.htm

• Is there a right way and a wrong way to pray?

The answer to this question is yes there is. We read in Luke 11:1  And it came to pass, that, as he was praying in a certain place, when he ceased, one of his disciples said unto him, Lord, teach us to pray, as John also taught his disciples.  This not only tells us that there is a right and a wrong way to pray, but we can also be taught to pray.  As with anything else our prayers should reflect our walk with God. Our prayers should become stronger as we gain insight into God’s holy plan.

• Will God still listen if we pray the wrong way?

God issues a warning to anyone who prays to only show that they are “men of God”. Or to boast in 
themselves saying look at me!

Matthew 23:14 Woe unto you, scribes and Pharisees, hypocrites! for ye devour widows' houses, and for a pretence make long prayer: therefore ye shall receive the greater damnation.

• Again here is another warning from God. This Pharisee was praying a boastful prayer, showing the pride of his heart.

Luke 18:10 Two men went up into the temple to pray; the one a Pharisee, and the other a publican.  (11)  The Pharisee stood and prayed thus with himself, God, I thank thee, that I am not as other men are, extortioners, unjust, adulterers, or even as this publican. (12) I fast twice in the week, I give tithes of all that I possess. (13)  And the publican, standing afar off, would not lift up so much as his eyes unto heaven, but smote upon his breast, saying, God be merciful to me a sinner.(14) I tell you, this man went down to his house justified rather than the other: for every one that exalteth himself shall be abased; and he that humbleth himself shall be exalted.

So many times I forget to tell God how truly miraculous and marvelous He really is. I forget to ask forgiveness of my wrong doings, and just go right into, "Help my daughter with this God" or "Keep Thomas safe while flying" or "Help me with this". God commands us to put God FIRST, our spouse SECOND, and our children THIRD! OMG, who finds that difficult? So many times I put Thomas before God, Heather before Thomas, and Heather before God. Wow, I really screwed that up. I'm trying to take one day at a time to re-set this priority. I cannot even try to fake this when I tell you all, that this is hard! Really hard! 

I have a daily devotional I am starting TODAY called Jesus Today by Sarah Young. She's awesome awesome awesome! Then, I always want to begin to pray to God praising Him first, asking forgiveness second, praying for Thomas, and then Heather. As I wanted to pray for Heather this morning, I came to a stump of WHAT exactly to pray for.........because there's a lot. To decloud my mind, I wrote it all down not only for me, but for all of you amazing prayer warriors out there that constantly follow our Heather Faith and ask how YOU can pray for her. So, it's lengthy, but I've made a prayer list. This gives each of you the discretion to pray about what you feel most inclined to pray for!

Heather Faith's Prayer Requests to HEAL her:

• To develop some cognitive learning ability
• Strengthened brain neurons to be able to communicate to other parts of her body
• Enhanced tracking with her eyes
• Enhanded focus looking down
• Head Control
• Balanced Extensors & Flexors in her neck and spine
• Ability to reach her arms to her head
• Ability to relax her joints in her shoulderns, wrists, ankles, and hips
• Encouraged growth and weight gain
• Ability to see clearly
• Ability to hear
• Prayer for decision making on cleft palate repair
• Prayer for, (if needed), successful cleft palate surgery
• Help with managing nasal & salivary secretions better
• Learn to have the ability to swallow
• Praise for closing her heart PDA at 5 weeks old
• Prayers  for continued closure of her heart ASD & VSD
• Prayer to NEVER need open heart surgery
• Strengthened Big BUFF lungs to one day be without oxygen
• Prayer for less & less people to smoke cigarettes in our world & in our personal life to give Heather her best chances to breathe on her own
• Prayer for thankfulness that Heather's Morgagni Hernia has not caused any complications
• Prayer for a one day successful Hernia repair surgery
• Thankfulness for her "1 1/2" kidneys
• Continued Prayer for Heather's left kidney to operate with all of God's mighty strength
• Prayer for Heather's right kidney to funcion properly
• Requests for Heather's Grade 3-4 kidney reflux to evaporate (Grade 5 is the highest)
• Prayer that her constant medications will not harm her internal systems
• To STOP her retching!!!
• Hope that Gtube & nissen will never require an additional surgery & will continue to operate well.
• Her rectal vaginal fistula & imperfiated anus will continue to function well on their own & will be able to avoid surgery for a colostomy or rectal pull through.
• Prayers for a successful rectal sugery (if needed)
•  Success & continued success in Physical Therapy, Occupational Therapy, & Speech Therapy & that they will enhance her physical, mental, verbal, and cognitive learning abilities to the fullest of HER potential.
• For Heather to show her own way of dancing to me!
• For Heather to overcome her ulnar deviation, flexed hips & ankles, and tightened shoulders
• For Heather's spinal tethered cord & to prevent the nerves from ever causing any nerve damage issues
• For Heather to one day be able to sit up, maybe crawl or stand, and maybe even walk!
• Prayers for all her doctors to learn through Heather to better know how to help other future Complete Trisomy 22 babies
• For continued strength, hope, faith, and trust in God for Thomas and me
• Prayers for future healthy pregnancies if God is willing
• For thankfulness to a loving and miraculous God
• Thankfulness for amazing family, friends, and strangers that all pray for Heather
• Thankfulness for an irreplacable Hospital Team
• Prayers for all Heather's Medical Professionals in allowing God to use HIS healing power through their hands: Opthalmology, Cleft Palate Team, ENT, Audiology, Genetics, Cardiology, Respiratory Therapists, PT, OT, Speech, Urology, Surgery, Neuro Surgery, Ortho, GI, and Home Nursing Care.
• Prayers for only good, positive, and uplifting people to come in our lives to support our family
• Prayers for NEVER needing to call 911
• Prayers for not needing to constantly jump out of bed to see if Heather is breathing
• For successful consolidated feeds so she does not need to be on continuous feeds 24 hours a day
• For minimal surgeries
• To one day try eating by mouth
• Prayers of praise for ME being able to produce milk for my daughter's health & to continue to be able to produce for a very long time.
• For Thomas & me to have warrior strong immune systems to always stay healthy for Heather
• Praise for Thomas' job being so supportive
• For all Heather's at home medical equipment to always work properly
• For Heather to be able to communicate to us in some way through sign language, few words, actions, or clearly in her own artistic way
• For Heather to be able to hear music, see our world, see Daddy's planes, Mommy dance, and taste something incredible....like chocolate!
• For Heather to know God, Mommy, and Daddy well
• For Heather to one day be able be outside whenever she wants, go to the grocery store on a whim, and be around multiple people at once
• Prayer for Heather's immune system to always strengthen 
• Most of all, prayers for Heather to have the best, most fulfilled, happy, & spiritual life!

As I started jotting down just a few requests, this is what I came up with! So, prayer warriors, that's quite a list, but our God is mighty & strong! 

Our God says in Luke 11:9:

"So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you."

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!