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!
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