The End

I've oftentimes wondered why I've written this.

I still don't know.

I don't know what solace it may bring me, or Nora, or a random mom struggling with a confusing diagnosis of her unborn child.

Or maybe I'll never see these plastered pink blog walls again. But I know that our written story ends here. It's time to carry with me my newfound confidence in myself, my family and my daughter, compliments of Miss Nora Grace, and celebrate each and every day together!

I've seen a lot of women write about their children with a diagnosis. And oftentimes they say, "I wouldn't have my child any other way. They were put on this Earth exactly as God intended. He hand picked my child for me and for these reasons (insert reasons here)."

I don't feel that way. I feel like Nora is a blessing. I feel like Nora is way stronger than any kiddo I've met thus far. I feel like God has granted us the pleasure of being her parents. In her short life I've learned more than I could have imagined, gained more than I knew possible, and through it all secured an appreciation for life that I was certainly lacking. But I absolutely would have Nora exactly as she is, plus one more chromosome if that were a choice.

No. It's not because I don't love Nora for every ounce of her being, exactly as she is.
No. It's not because I hate her having Turner's Syndrome.
No. It's not because I haven't accepted or embraced this diagnosis yet.

It's because it sucks that that one missing chromosome makes for so many struggles on ones life. It's totally not fair. I'm not excited to hold Nora's hand through the shots and the tears and the doctors appointments and the hard discussions. I'm so terribly sad that I can't just take her place and do it for her. But I can't, so I can only be her mother. I can be there for her in every way possible, except for this: I can't make the shots go away. I can't make the doctor appointments stop. I can't promise her heart will not have more problems. I can't give her children of her own. I can't make social situations easier to understand. I can't make math unconfusing (that's a word, right? ;)). I can only sit back and watch and pray that God grant us all of the joy and strength and laughter he has thus far. It's because of Him she is here with us today, it's because of Him we have managed the dark times, and it's because of Him that we will continue to thrive.

Turner's Syndrome is so far from the end of the world. At the end of the day, it's no deal breaker for a happy and full life. But it's certainly something worth noting, something challenging, something no one WANTS to have on their plate- mother or daughter.

But, here we are.
So, let's turn lemons into lemonade, and get on with it.

From the very bottom of my heart I thank every one of you for the support, guidance, encouragement and love. I can't express what a joy it has been to have you all alongside us through this journey. And the love you have shown our darling girl--it's the greatest joy I could have ever asked for.

Thank you.

Confidence

Confidence.
This is a word that I've always looked up to. I've never quite had the confidence that I feel is adequate for a full life. I might even say that at times I've not quite felt adequate myself.

One might argue that having my very first baby girl, born with defects and "inadequacies," might severely hinder one's ability to feel adequate.

Lucky for me this isn't the case.

Here is Nora's list as it stands right now:

-repaired coarctation of the aorta.
-bicuspid aortic valve
-Ventricular Septal Defect
-aortic stenosis
-hypertension
-CPAMS, removed from the right lung.
-unknown masses on the left lung.
-loss of ovarian function
-unusual shaped kidneys
-high palette
-webbed neck
-extra skin on he neck
-bowed shin bones
-Ptosis of the left eye
-Turner's Syndrome

But here is what I see when I look at Nora:

-joy
-determination
-strength
-beauty
-innocence
-curiosity
-wonder
-stubbornness
-a wild side
-energy
-laughter
-smiles
-love

Most importantly, I see a baby.
Nora Grace is a baby just like any other baby in the world, and unlike any other baby in the world. She is unique. She is our daughter. She has her daddy's eyes. Her mama's nose (and unfortunately my toes?). And some features of someone with Turner's Syndrome.

We could spend a while reading Nora's medical charts. We could analyze more X-rays than one could imagine. We could discuss the meaning of each and every part of Nora's body. And I will. I will spend every second of time required of me to make sure the decisions made regarding Nora's health and future are truly in her best interest.

But I won't spend a second more than is required. You see, the more time I spend devoted to the medical needs of this darling girl, the less time I spend giggling on the living room floor with her. And the giggles are an essential part of her health and future as well.

We arrived home from the dreaded lung surgery nearly a week ago, and we were thrilled to get home. It wasn't a smooth exit from the hospital as Nora left much less healthy than she entered it, and it has been anything but a smooth transition back into life as we know it.

But, we did it!
We did pregnancy.
We did delivery.
We did heart surgery.
We did therapy.
We did feeding issues.
We did reflux management.
We did RSV season.
We did lung surgery.
We did the first six months of parenthood!?

We have managed it all. We are smiling. We are out the other side. We are living life with our baby girl who isn't in any way how I imagined her, but rather a gazillion times more wonderful. I have more pride in Nora Grace than in anything else worth dreaming up.

And thus. I have confidence.
When we first arrived into parenthood, just over a year ago,  our baby girl was still so small in my belly,  and I lacked confidence. I didn't know what was to happen. I didn't know she would be ok. I didn't know what the future might hold. I was uncertain and scared and so very naive.

Today though, I know.
I know that Nora is going to be more than OK. I know that Nora can do anything she sets her mind to. I know that Kevin and I can work together as a team to be parents. I know that we can live in the hospital. We can manage grueling exam and test, after grueling exam and test. We can manage medication. We can put our trust in doctors and nurses to give her the care she needs and repair the parts that need it. I know that we have the strength to ask questions and ponder alternatives. I know that we can endure hardship to get to a more promising future. We can make decisions for Nora, and discuss when it's time for her to make decisions for herself.  I know that we can get through a night of tears. We can manage a poopy onesie and a hungry baby and a fussy baby and a sleepless baby and a fed up baby. We can challenge our previous thoughts and create new solutions. I know that we can be open minded. I know that we can laugh at our baby and with our baby. I know that we can love with our whole hearts. We can see life's hurdles as perfectly imperfect, and smile all together as we do it.

The list of imperfections will likely grow. The days spent at Children's Hospital may continue to rise. The list of surgeries and tests Nora must have may not be complete. But neither is our time to grow as a family. We have been given the most wonderful gift of joy and strength.

And with it He gave us confidence.

Patience

Patience is a virtue, they say.
But what they really mean is patience is a necessity.

We are still in the hospital. Waiting. All day we wait.

We've done this before.
Last time we waited it was for Miss Nora to eat.

Today Nora eats.
She eats just fine. Not as well as at home, but that's not unexpected given the pain medication, the environment, the surgery, the tube draining fluids from her chest. It's all fine that she isn't eating quite up to par. She still eats.

Might as well look pretty while we wait!

This time we wait for the tube.
Nora is somewhat of a champion of surgical complications.
Currently, we deal with one called an "air leak." Quite literally that means the lung they cut apart is leaking air from the suture site. That air is finding it's way into her chest cavity. The tube in her chest is sucking the air out and down into this little box that hangs from her bed. There we watch the air enter the fluid in the box and create little bubbles that float to the top. All day long we watch these bubbles. Sometimes we think the bubbles have decreased! Sometimes we think the bubbles have increased. It doesn't really matter, as long as there are any bubbles at all, the tube remains.

Dress up sure makes waiting more fun!

I'm sure you can imagine why this is. If we were to remove the chest tube before the air leak were gone we would run the risk of allowing the air bubbles to simply rest in her chest, causing obvious discomfort, pain, and trips back to the hospital. So, we wait.

Last time we waited I was recovering from child birth. Kevin was taking care of me. Our baby was happy to sleep all day and all night. This just isn't the case anymore.

A six month old confined to one room, tubes, wires, oxygen all day- or all week isn't super easy. We can't really leave her bedside, unless of course it's to the rocking chair to sit up for a bit, take a nap together, read a book, etc. While we used to leave her to rest while we went to get dinner, went to run some errands, went to simply get outside, we no longer can. Not unless we want Nora to eat her oxygen tube, pull off her leeds, tug at the chest tube and generally cause a ruckus.

success after a long battle of getting baby girl to sleep!

Don't get me wrong, there is nothing I love more than watching Nora fight back. This girl has got spunk, and she is showing it now more than ever before. She refuses oxygen at times. She won't stand for any toy except her pulse-ox, and she adores refusing her meds and/or spitting them out. She won't even let the doctors listen to her heart without a fight. It's sort of hilarious and so cute. But by the end of the day, it can be exhausting and frustrating. We are all a little bit restless.

Our first venture out in the little red wagon. So fun!

So, each evening we've taken to a wagon ride. We pack up the oxygen, the chest tube, blankets and toys and venture out of the CPCU for a little trip. Nora always smiles. We smile back. And when we return we all feel a little refreshed and ready to rest some more.

Wagon rides with Cousin Charlotte!

We have only been here 5 nights, and 6 days. They predicted a week. We are on track. Nora isn't in as much pain these days. She is happy. She is full of smiles. She still manages to roll all over her crib. Things aren't bad.

Things could be So. Much. Worse.

But we are still ready. Ready to be done. Ready to seal up that chest tube site. Ready to say goodbye to the hospital and hello to the swimming pool and the backyard swing and our beds, and sinks and puppies! We are so grateful for such a happy girl, tough girl, and healthy girl. I know it appears she isn't in great health. But it doesn't take more than a few minutes in this amazing hospital to see that Nora is a very, very lucky girl. Whenever we do go home we will leave behind so many children that have been here long before her and will be here long after. This breaks my heart. I feel for these families and these children. I wish with all of my soul that they were only waiting on an air leak. But for many they are waiting on a miracle, a transplant, a cure. I have no way to help these families and children and no way to make it better. All I can do it be grateful for Miss Nora and the cards we've been dealt and the smiles we've been given.

And also, I can be patient. Patient with a smile on my face so everyone knows that we are O.K.

Tonight when you say a little prayer for Miss Nora, that she continues to heal, continues to smile, continues to beat the odds and show her spunk, please say a prayer for everyone we will leave behind at the hospital when our waiting period is over. It may be days, it may be weeks, but in the end we will leave others here to wait. Please pray their waiting ends soon, and in a positive light.

Thank you for all of your support!

See ya never, 3024.

Well folks, we survived a long lobectomy procedure yesterday.

They were a bit behind in scheduling so we had some extra fun with our baby girl before they took her back to the operating room.

Surgery was loooooonnnnnnggggg, but uneventful. They struggled to intubate her, but then they were able to continue with surgery thoroscopically. They removed the upper lobe of her lung and could tell it was certainly abnormal tissue, but still can't tell us exactly what it was. We will get pathology reports early in the week.

Now, we all know the true beast of this animal is recovery.
Nora started that journey in room 3024. That's the same room she recovered in from heart surgery. It's our little comfort zone, and place of horror right in the middle of the Cardiac Intensive Care Unit. Upon entering the room it felt a little bit too much like we had never left. We knew the nurses and doctors, we knew the bed and storage locations, we knew exactly how to get there and where everything was from there. But also that felt really nice.

But what felt especially nice was to see her after surgery breathing on her own.

She doesn't have a gazillion medications. She isn't struggling to breathe. Her lungs sound a bit wonky, but she is breathing well. She is a bit hoarse, but nothing like she was with a paralyzed vocal cord post heart surgery. We were able to hold her about 1am last night and it was such a relief.

Even more so, we are glad to say goodbye to Room 3024. We have been given CPCU status and are officially out of the the Intensive Care Unit.

That must mean she is doing better, right?

Sort of.

Medically, Nora is recovering as expected. Her heart is handling the operation wonderfully.
But she is very uncomfortable. The pain from surgery and the drainage tube in her chest is fierce. She is constipated and unable to keep feeds or meds down (but she had been eating! So that's a great big WIN!).

We are exhausted.
Before this surgery I was so ready to just get it done. I wanted it behind us.
And I'm sure when the pain subsides and we are finally home again I'll be glad to be on the other side of this event.

Right now, however, we aren't in front of it or behind it, we are in the middle of it. And it's really hard. Nora is scared and uncomfortable and attempting to be mobile through it. It's hard to manage. it's hard to watch, and it's just darn right exhausting.

Please say a little prayer for relief for our darling Nora. She has definitely reached super human status and we are so very proud. But even the superest of humans need a little love and support every once in a while- her time is now.

Thank you for all of your prayers and support up to this point!
Love to you all!

News

Great news! Remember that paralyzed vocal cord from heart surgery? The one of many complications Miss Nora tackled? It's healing!!! Praise the good Lord above! It isn't quite functioning perfectly just yet, but expected to make a full recovery, and unless we are concerned and feel like, we can go ahead and quit sticking a camera up her nose and down her throat. YAY!

But also,
Fear has struck us again.
Continued disappointment and worry is on the prowl.

But it's still impossible not to smile when this darling face greets us with a smile.

Nora is a happy baby girl. She hates long drives in the car, particularly towards Aurora, Colorado. She is furious when we don't heat the bottle quickly enough, and sometimes she is just damn right mad that acid reflux interrupts her naps. But she smiles at everyone. Her laugh brings joy to everyone in the room and we sure love her! I am certain God gave us this happy little girl with more smiles than tears and joy to spread so we could get through this all with a few extra smiles.

We've learned a lot in the last few weeks. We've had many hospital visits and phone calls, and rescheduled events. We've waited by the phone for the Children's Hospital number to appear with news. Each time, it has been a little deflating.

Things are as one might have expected- but not necessarily as one might have hoped.

After having some blood work completed on Miss Nora we learned from the Endocrinologist that Nora has virtually no ovarian function remaining. Her body is working hard in an attempt to produce the necessary hormones that are generally produced at infancy, but she can't. Her ovaries don't work.

I know what you're thinking, "Well, duh. Nora has Turner's Syndrome, that's one of the 'symptoms.' But guys, come on, in rare cases some ovary function remains, and I sort of had a little hope of that. I knew this was more likely, but I'm still gonna go ahead and mourn the loss of our baby girl's ovaries. I certainly wasn't attached to her ovaries, and cool, we aren't about to deal with unexpected period problems from our 9 year old, and teen pregnancy isn't in the cards for her. So, cool. Except it's just another test, with results we didn't want. It confirms all the things. it ensures hormone replacement therapy, on top of all the other therapies. It makes it all a little more real. More true.

But that is the least of our concerns currently.

Currently, it's 3:10am and I am typing away releasing the feelings while Kevin, Nora, Luna and Torrey are snoozing away. I must be mad. What mom of an infant lies awake after the baby is done nursing, and my remaining hours of nighttime are mine for the taking!?

Well, one that is researching CPAMS/CCAMS (no one knows what to call them, I'll call them both). It's been my experience that all moms are restless and lose sleep over silly things. We all find ourselves googling the color of baby poop, how to begin solids, the safest mattress for tummy sleeping babies, etc. Tonight, my late night research sends me on a hunt to find the effects of lobectomy procedures on babies.

"Hi, Deidre. It's Dr. Bush. I've been reviewing the results from Nora's CT Scan from last week. She definitely still has a mass or lesion on her upper right lung. Now the question is what to do about it. It's recommended it be removed. I'm going to get you in touch with a pediatric surgeon."

This is an image of Nora during the fetal MRI I had in October. SO CREEPY. And that's my demon fairy placenta there resting on her legs. But check out that right lung- there is not supposed to be a giant highlighted blob.

And just like that our biggest hope was shattered.

Nora is having a lobectomy on July 16. "But she doesn't seem to have breathing problems..." they all say. "Her sats are good." Yes, yes I know. She breathes like a champ. For goodness sakes this baby had a small dosage of oxygen for less than 24 hours post heart surgery. This baby breathes likes a champ. Thanks, Dr. Schneider for the steroid shots in utero. I can't be certain that is why she is such a breathing bad-ass, but I'll give you the credit, sir.

Nora needs a lobectomy because of the potential for infections and for malignancy. While Nora remains an infant the risk is present for pulmonary blastoma and rhabdomyosarcoma. As she grows we move on to bronchioloalveolar carcinoma. Nora could get cancer from these masses, that we now call lesions. Nora also could have severe infections, multiple infections. The risk is low. But it is there- and I'm pretty sure there is a general rule I follow in life: don't mess with cancer. So, see ya later lesions.

"It's recommended we remove this. I don't quite know what it is. It could be pulmonary atresia, which is where the upper lobe just doesn't quite form right during that time of development in utero. Or it could be these CPAMS which everyone has been calling it. Regardless, we need to remove it. It's called a lobectomy. There are three lobes on her right side. We are going to completely remove the upper one."

Insert giant, watery eyes from parents.

"Don't worry, we really shouldn't be seeing much of an impact on her lung function post surgery. Essentially that entire lobe hasn't functioned since she was born, so we are just removing lung tissue that hasn't served a purpose for her. We shouldn't see much of a change in her saturations or her ability to do normal activity. Now, don't expect her to be an elite marathon runner or Olympic athlete, but you wouldn't expect that from her anyway. Her heart will be her limiting factor in life, not her lungs...."

Oh. Good?

It's not as though I've been expecting Nora to be an Olympic athlete. But it's sort of a bummer that we are discussing with a pediatric surgeon which of Nora's congenital defects will be limiting her more in life...amiright!?

(But also, guys, if Nora wants to be an Olympic athlete, who am I to stop her!? I say go for it, girl!)

There is nothing like having a baby with multiple defects that can crush your soul. I know I had no control. None of this was in my or Kevin's hands. Nothing we did, except prayer, had an impact on Nora's condition. But for real, we made this beautiful baby girl, I mean for real, she is stunning. But how come I couldn't quite make it all work right? How come she has lung lesions that aren't in any way connected to her having Turner's Syndrome? How come her heart has a whole that won't close? How come my body couldn't fix it? I tried to talk it into being a miracle-working vessel time and time again, but my body couldn't do it. WHY!?!?! It can all be a little bit disheartening.

But then again, as I read the research on CPAMS, Turner's Syndrome, Congenital Heart Defects I ALWAYS cry. Because here is thing, Nora was super high risk. Nora had big problems. It's a miracle and a half that Nora made it as long as she did in utero without that hygroma taking over, without developing fetal hydrops, without going into early labor, without having lung lesions grow to an unsafe size. She made it into this world with flying colors, she conquered heart surgery with unbelievable strength at only five pounds. She learned to eat. She learned to grab her giant feet (seriously, her feet are giant), she learned to roll over. Knowing what I know now about birth defects, heart defects, chromosomal abnormalities, Turner's Syndrome Nora is an unbelievable specimen. And for that, I'll give myself a pat on the back and say, "Good work, Deidre, you grew a super human."

I guess it's all just a matter of perspective.

And so while I continue to make myself comfortable with lung surgery on the right side by saying we are potentially saving her from a future cancer one day, I am changing my perspective to think about the left lung..

Oh yes. Remember the phrase BILATERAL CPAMS.

"It's very rare for a baby to have these lesions on their lungs. It's very rare for it to take up an entire lobe of the lung or in rare cases the entire lung. But what is very rare is it being on BOTH lungs."

Thanks doctor. I hate to break it to you, but I am WELL versed in the rarities of my super human. She fits into the smidgen side of pretty much every statistic (Even when she hits the positive side, she is the small number- just fitting her statistics to her size, I suppose).

Anyway, the left lung still has SOMETHING. What? They don't know. CPAMS? Some scarring? Just a bit of lung that is collapsed because she was laying down during the CT Scan? Not sure. We'll worry about that later. It would be a separate surgery anyway as it's the bottom left and can't be accessed from the right lung access point anyway. "I recommend leaving it alone for now, and in a while we will revisit it, do another sedated scan, and come up with a plan."

Ok so on the right lung we say," Remove it! We are saving her from cancer. "And on the left lung we say, "The chance of malignancy is small, it's ok for now, we will deal with it later."

That's sure tricky.
But I'll do it. I'll do it so that I can....sleep at night? Hmmm.

The surgery will be in the afternoon on July 16. She will be unfed and mad as hell, I'm sure. The good news is the hope is to be able to do this surgery laparoscopically. Only three small incisions on the right side. This makes recovery much quicker and easier. This makes mom's heart beat a bit slower. YAY!. The expected hospital time is about a week- assuming any complications are minimal, or hopefully nonexistent.

Speaking of complications- I've learned from heart surgery that they are the real reason to worry about surgery. The surgery isn't really that scary- what happens because of surgery can make my heart sink. So kylis- remember that dreadful complication from heart surgery that ended in a tube draining yellow fluid from her chest? It's a rare complication, incredibly hard to treat, and more common for someone with Turner's Syndrome (see, small side of a statistic again). That complication, however, is virtually unheard of in this surgery- never seen by our surgeon. So, that is encouraging. And given her larger size now, the risk of injuring or re-injuring any vocal cords is slim with intubation.

Things aren't looking so bad, right?

Ok. But here is what we need.
We need a little prayer to get us through this. We need some strength to trust in God and trust in the doctors. We need help navigating our options as parents and in trusting ourselves to make the right decisions. We need the doctors to to be right about the impact of removing an entire lobe of her lung, and we need Nora to show us the very same strength she has so many times before.

Let's do this, guys. I'm hoping this is a final push!

And as always, thank you so very much for all of your support.

Truth

My glass is generally half-full. My optimism towards some topics drives people nuts. My "it's really not that bad" attitude is one that has gotten me far, and left me feeling happy.

Ready for summer!

And this positive attitude extends towards my hopes and dreams for our Nora Grace. I've spent a great deal of time searching for my silver linings, being grateful for all the joy we've been given, counting my blessings and counting Nora at least twice.

But here is my truth- this is all very hard and daunting, and this mama needs to let it out a bit.

To start, we had a WONDERFUL experience at Children's Hospital on Friday at their BRAND SPANKIN' NEW Multidisciplinary Clinic. This had been open one week when we visited. The clinic is available to many different realms of medicine and used by those that helped fund the construction and staffing of it (probably by others as well- but that's how our end of it worked). The Turner's Syndrome Clinic runs once a month-ish and gets to take over the clinic for a full day. On those days the halls are filled with geneticists, endocrinologists, cardiologists, neuropsychologists, and this list goes on...whomever someone with Turner's Syndrome needs to see, they appear! It's magical. And it's all in one place, and they ALL talk and are on the same page and know EVERYTHING there is to know about Turner's Syndrome. And they are all these smarty pants doctors that have hearts that function for feelings, not just breathing. It's beautiful.

Enjoying the Turner's Clinic

And, they remembered Kevin and I. They remembered baby Nora Grace. They remembered ALL of you! Before we even stepped onto the elevator a woman stood next to us with Turner's Syndrome goods in tow. Before we made it up to the clinic we had been reintroduced (it was the president of the Turner's Syndrome Chapter of Colorado), told how grateful they were that Nora was doing so well, asked how Kevin and I were handling everything, and told to come get treats and goodies in the family lounge. As we entered the clinic the woman in charge, Doctor Pickler, remembered us from the Turner's Walk last September as well. She remembered our large team and thanked us all for helping to fund the clinic. Throughout the doctors and check-ups with Nora we visited the family lounge meetings families we had met before at the Turner's walk, and meeting new families, all there to treat their daughters with Turner's Syndrome. It felt so wonderful to be with other families that have done this and are doing this all, and also it felt great to eat some goldfish snacks provided by the chapter. :)

:)

More than that, I saw the scars of the other mothers. And they could see mine. It felt good to be with other moms that can relate, and see my worry for what it really is. I don't need to explain myself. I don't need to pretend. I don't need to be always positive. I don't need to remind them that I adore my daughter with all of my soul, but yes, I am going to talk about what problems I see. They know. They know my love, and they know my worry. They know my heartache. They shared their stories of diagnosis. They shared their stories of cardiac surgery or doctor visits. They shared it openly, and honestly. And they showed me that whether it was two months prior, or twenty years, it's real and that those memories don't fade. But they also showed me that their daughters are positively beautiful and strong and can endure a lot. They showed me that even though there is so much worry, some days it's just no big deal at all. Some days it just ain't no thang. And some days, it's crumpling. And they showed me that it is a-ok. I learned that my life won't always feel like it's revolving around a world of Turner's. There will be other things. Some day.
It's a joyous feeling to have that group of women that just get it.

Getting so big!

But, what did we learn? How did the appointments go, you ask?
Well, we learned a lot more about Turner's Syndrome, we learned all the things she is at risk for in more detail, we learned all about her heart and the true challenges Nora faces. We learned she isn't the only girl with Turner's with the many heart defects she has, but we learned that if she has one, the increase for other problems is real and daunting. We learned that the balance between having a healthy heart and overworking her heart is a real challenge, and something we have to keep close tabs on as she grows. We learned the tests she'll need, the shots she'll need, the way the doctors will help us and when. And we left with so many "risks"to carry around with us, but zero answers.

Buuuummmmmmmmmmmmmer.

Obsessed with this ball!

Nora is growing phenomenally. She looks beautiful.  But also, she is at risk for what feels like a billion things. And there is always a number next to it: 10% get scoliosis, 15% have thyroid problems, which can lead to Diabetes, at age 15-18 (or earlier if needed) she needs a cardiac MRI, at ___ age she starts shots, at ___ age she starts Estrogen, the learning disabilities, the social struggles, the psychological impact, etc. etc. etc. "Oh, and by the way, the literature about women with Turner's Syndrome isn't good- many women don't lead real successful lives into adulthood- we need to really work as a team to help Nora know just what she is capable of, and help her to lead a successful, happy, independent life."

But then again, all of these are just "risks." They aren't for certain. We may deal with them, we may not.

More of the same.
I felt a little bit like pregnancy was happening all over again.

Mommy's favorite jammies!

We spoke with one doctor about the challenges of having a child with such risks. She said, "Truly. It's a lot. But we have a blueprint to follow. No other children you have with come with a guidebook to tell you what to look for. Their issues may just arise without warning, without you looking. For Nora, we know what to look for. We know what problems to be aware of before they happen, so we can prevent them and solve them before it's potentially too late. That makes it all so much easier."

That is probably true. I want to believe her and be thankful. I want to be overjoyed about knowing what to look for.

And we sort of are. We realize how incredibly lucky we are. We still count the blessings, and we know those four months of pregnancy filled with worry and wonderings are all worth it to know what we were up against and process it before Nora was here. It helped us to be positive and happy and there for her in exactly the right ways when she arrived.

So much to smile about!

But, let's talk about worry. We all worry about our children. We all wonder if something is terribly wrong without our knowing. Every mom I know has poked their sleeping baby just to ensure their still breathing. I know it is all true. Worry is part of this parenting gig. BUT GOOD GRIEF, HOW DO I KNOW THAT NORA'S STAPLED HEART PARTS ARE STILL STAPLED!?!? HOW DO I KNOW THE LUNGS ARE STILL WORKING LIKE THEY SHOULD WITH THOSE MASSES!?!? DOES SHE HAVE MASSES!?!? AND MY GOD, I HAVE MY LIST- WHAT ELSE IS TO COME!?!?!?!

My truth: I'm tired of wondering what other battles we face. I'm tired of looking at the list and trying to choose the lesser of two evils- I know we'll face some of them, which ones are the ones that I can "deal" with? OR, OMG, WHAT IF MY NORA GIRL HAS TO FACE THEM ALLLL!? I'm so sick of thinking about how we'll afford growth hormone shots for so many years. I'm tired of wondering how much height we will be able to squeeze out of her. I wish with all of my heart I could say with certainty that she will one day be able to run races next to me, and beat her dad down the ski hill. But I can't. I don't know what Nora's heart will be able to take. I'm not sure if the impact of the lung masses, or surgery will leave her with a lesser lung function. What if she does get scoliosis and it's severe? They say it's fine, we can do things- but then you read the literature, and it's just not always fine. I want to know what social skills we need to be ready to practice and help her learn. I want to simply enjoy living life with my baby girl without all the daunting worry already piling on. I want to just love on her and be grateful, and I want so badly not to think about ALL THE THINGS. The things can be overwhelming. They can destroy you in a matter of minutes if you're not careful.

Feel asleep sucking on her carrier.

Snuggles- So much fun!

We couldn't be in a better spot with Nora and her care. We are so very lucky. We entered the world of Turner's Syndrome at a time when research gains are being made, treatment is incredible, doctors are available in plenty, and we knew it early, making it all so much easier to manage.

But for goodness sakes, wouldn't it be lovely if Nora could struggle with math one day and we won't say, "It's because of the Turners." We could just say it's because math is hard. If when she is twelve and as awkward as it gets I would love to be able to say, "Tweens are so weird." And they are. And it's true, they are soooo awkward. But also, I will be thinking, "Is this because of Turner's? Is the Nonverbal Learning Disorder that is happening before my eyes?" I wish we didn't always have a direction to point when we discover Nora's shortcomings.

Sometimes ignorance is bliss.
The more we read and learn, the more worry we have, and the less we know.

So my truth: sometimes it all totally sucks. And sometimes, it's all beautiful and wonderful.

In five days we head to Children's Hospital once again. This time a little visit with ENT to see if that vocal cord is still paralyzed, or if we finally landed on the good side of one of the statistics - after all, 35% of paralyzed vocal cords heal. :)

And, those lungs. The big question will be answered. Nora may be sedated for a CT scan to finally see those dang lung masses once again. And then we'll finally know- lung surgery, or not? Our tensions are rising. We are anxious to know the answers. In the mean time, we shall visit the pool and enjoy the warm weather. :)

Send a little, or GIANT, prayer for Nora Grace as we visit Children's and find out our next steps.

Someone thinks it's funny when she pukes all over herself.

A great big thank you to everyone. The Turner's Syndrome Clinic is available to us because of you. There aren't enough ways to says thanks for that!

Forever grateful.

I haven't any idea why I continue to write this blog.

Is it for Nora, as I once proclaimed? Will Nora ever even read this?

 Is it for me? Because there certainly is something therapeutic in writing.

Is it for you? Because I continue to get thanks from people for writing- although I'm not sure what I'm writing for?

Am I writing on the off-chance that somewhere, someday, someone that is struggling with something mildly related can find peace in knowing they aren't alone? That there is hope?

Is it because we aren't out of the woods? But then again, will we, Nora, ever really be out of the woods?

What is it that we are really going through? Is it parenting a baby with heart defects? A baby with lung abnormalities? A baby with Turner's syndrome and a lifetime of medical care ahead of her?

Is it finding our way through the guilt and confusion in having a baby with chromosome abnormalities?

Is it coping and maintaining a marriage while also taking on children, and children with high demands?

Or is it simply parenting we are doing? Life we are taking on?

The answer, I don't know.

I do know a few things though.

It's taken a lot of work to get right here. There is no doubt about the struggles we have been through- emotionally, mentally, physically, financially- they are all part of this. We certainly have done little relaxing since last September.

It takes brain power, thought, emotion, communication, hope, love, prayer, God and strength to do all of these things.

It takes forgiveness, too. To forgive ourselves for not passing on that damn X chromosome to Nora is no small undertaking. It takes strength to see beyond the abnormalities they show you in ultrasounds and believe in a little, beautiful baby girl. It takes hope to pass your baby girl off to surgeons to perform heart surgery. It takes emotional stability and instability, as well as openness to allow all of it to enter and then, escape again. It takes faith and prayer and trust in God to take care of you.

This experience has without a doubt changed Kevin and I. We have had to make choices we never thought we would make. We have had emotions we never thought we would feel. We have laughed and smiled in the oddest of situations. We have grown together, and apart, and in sync, and out of sync. We have developed patience and teamwork. We have gained trust. We have learned to cope with what life hands us.

We have become parents.

That one is most important.

God granted us our baby girl. I thank him every day for that gift. at the end of all of this- the doctors. The nurses. The therapists. The ultrasound gel. The echocardiograms. The confusion. The tears. The smiles. The worry- at the end of all of it lies this undeniably beautiful and perfect baby girl created by God and Kevin and I, nurtured by sooo very many people. It's a gift not all are given. It's something not to be taken lightly or for granted.

We are blessed beyond words and grateful for every moment with this peanut!

As we approach the end of the school year we face some doctor appointments that will determine our next battles, or celebrations. We will see in early June if Nora Grace does or does not need surgery to remove the masses on her lungs. If she doesn't, summer commences and at the pool we shall celebrate! If she does, who wants to watch the pups while we take on Children's Hospital once again?

And some exciting things are happening as well! Remember back in September when we all walked and raised money to support a future Turber's clinic at Children's Hosptial!? Well, it's finally happening!! At the end of this month we will go to the FIRST EVER Turner's clinic and meet a ton of doctors, and other girls with Turners, and see what everyone's hard work support has created! We are so very thrilled to share in the clinic's first day! Our appointment might actually be the first of the day!

Continue to pray for our Nora- but also pray for the many men and women out there hoping to one day meet their little baby alive, hoping they will find peace in a tough spot, and hoping they find a way through it.

Many thanks!!!

Throwback Thursday- to our first family photo, and Life Is Good Day- the day Nora  had surgery! 

Lucky

It's been a while, folks.

One month. A magical month. A happy, happy month.

In the past month Nora has become a whole new baby. When we got home from the hospital, when Nora was 3 weeks old, I had only seen her eyes open a handful of times. I had never breastfed her, handled the midnight feedings without nurses to guide me, or even watched her breathe without seeing her heart rate, respiratory rate, oxygen saturations and blood pressure on the screen right in front of me. Not a day went by that we didn't have a doctor to check her and tell us everything was ok, or wasn't. She was weighed daily and her meds were administered by someone else nearly every day.

Then, we went home. And that was stressful! I think that every parent everywhere thinks going home with baby number one is stressful. There is no doubt in my mind about that! My stressors felt all the same as every new mom. But then I also sometimes wondered if I was getting her meds right, if her respiratory rate was simply newborn breathing, or that her bilateral CPAMS were becoming symptomatic, or the hole in her heart was causing trouble. I wondered if the "blue spells" the doctors described were happening when I was sleeping, and I might be missing something? I was terrified that she really was guzzling all of her food right on past her paralyzed vocal cord and  into her lungs. There is no denying that I knew all of the things about my baby girl that I needed to know in order to properly parent her- and also, I knew way too much. Too much to feel comfortable with day to day life without my doctors and nurses.

But, just as we made it through pregnancy and through heart surgery and through our stay at the hospital, we made it through the "phase of great worry and adjustment." We're in a new phase. A phase of trusting. A phase in believing that our Nora Grace is one tough cookie. A phase in knowing that there are some things we just can't change, and that's totally ok with us!

Easter!

There was a time throughout pregnancy that I hated it all. I hated having a diagnosis for the baby I had never met. I was so frustrated that I knew only things that were "abnormal" about our girl. It just wasn't how I wanted it all to go. It wasn't how I imagined it. It wasn't fun. It was worrisome, and had a negative, stressful, ugggghhhhh feel to it. I constantly asked God, "Why did you choose us? Why does our baby girl have so many struggles? Why do WE have s many struggles?" It felt unfair. It felt like THE WORST. Even after accepting the news of having a baby girl with a chromosomal abnormality I wondered why on earth we didn't at least get to meet her first. After all, MOST girls with Turner's Syndrome aren't diagnosed until they pop off of the growth chart, or until after they don't go into puberty. How come we didn't get to meet our baby girl AND THEN go through all the dealing with it? How come we are dealing with is right away? How come we aren't allowed to just love our baby girl day in and out before we learn our lot?

But now I see. We are so incredibly lucky.

That might not be the right word. We are blessed beyond words. God had a hand in our luck! Nora has Turner's Syndrome. She has a long list of heart defects We started dealing with all of this well before she was born, and it has been super tough. But we know.  We already know all of the things. Nora goes to the doctor with an incredibly detailed file and we discuss ALL of the THINGS. We are there FOREVER. We don't know what her future will hold, we don't know what other health concerns might arise, or what psychological or academic struggles might present themselves. But we do know where to look. We know what is likely and common. We know what she already faces and how to deal with it as she grows. We know the game plan for each item, no matter how they present. We know what early interventions will be helpful, what paths we may need to wander before we find answers, and we know we have an unbelievably committed and friendly team of people who have loved Nora since before she was born. We are so lucky.

I would have Nora Grace no other way. She is happy. She is strong. She is defying odds and she has Kevin and I wrapped around her little fingers, which are getting chubbier by the day.

As we manage what may come we continue to pray. We pray that hole in her heart does indeed close. We pray that the lung masses have disappeared, and if they haven't, we pray for the strength to find our back into the hospital to have them removed. We pray for Nora to keep growing and eating and developing as wonderfully as she has thus far.

Just Chillin'

And also, we smile. What once felt daunting finally feels happy. What once was too scary to manage feels joyous. What once was unknown is known, and its absolutely imperfect in the most perfect way.

I'm thinking about rolling over soon...

Cheers to Nora Grace!

Impact.

The impact of all the past few months is great. Great as in large. This is big.

I feel like I am somewhere between the undeniable bliss of being a new mom and suffering from Post Traumatic Stress Disorder.

Everything is stressful. And everything is perfect and wonderful.

We have been impacted greatly as well as been celebrating during every minute of every day.

One minute I am hugging Nora, kissing her cheeks, dancing with her in the kitchen, thanking God for all the things.

The next minute I might be replaying that most traumatic scenes from pregnancy and from the hardest days in the hospital.

The impact of my pregnancy is fierce. The number of times I've watched, as though out of my own body, the hardest days is unbelievable. I've gone through the day I told Kevin I was pregnant, to the day we were told of the hygroma and I called my mom to tell her something was wrong. I've watched myself break into a million pieces when the doctors asked me if I'm going to terminate my pregnancy. I've shed tears over the party we threw her before we knew if we would ever meet her. I've been shown the masses on her lungs a billion times and told she is going to need heart surgery. And I have watched myself check in to Children's Hospital three weeks too early to deliver a baby that might not be breathing.

The impact of Nora's battle is intense and ongoing. I see these scenes as well. I've watched myself hand Nora over to the doctors to be taken into surgery at least a hundred times. I've heard over and over again her labored breathing when her injured lymphatic system was leaking fluid and putting pressure on her lungs. I've watched her scream and cry from the ENT team placing a tube down her throat. I've watched her sleep for unbelievable numbers of hours, rarely opening her eyes because healing was all her body could do. I've seen her body swell up like a balloon.The look on her face when her cry was too weak to hear is implanted in my brain. I have witnessed dozens of X-rays and ultrasounds on her little chest. I have seen her face when I pushed the NG tube into her nose and down into her stomach. I have begged Nora to eat both in the hospital and at home. I have logged and counted milliliter after milliliter of breastmilk and formula eaten. I've laid awake at night listening to her breathing and trying to determine if it's labored, shallow and quick. I've held her close after we clean the incision over and over again. I've spent hours trying to stretch out her limbs from the impact of being born early and having heart surgery so quickly. I've wondered if her cough during feeding is aspiration or simply a cough. I've given her syringe after syringe after syringe of medication to help her acid reflux and I've cuddled her to sleep when it's causing her pain.

And the impact of having a beautiful baby girl is undeniably the greatest impact of all. I've re-watched the moment she was born and I finally got to see her face and hear her cry. I've watched her lay with the NICU team breathing on her own and sucking a pacifier. I've seen her big blue eyes when I was able to hold her for the first time. I watch the scenes of me trekking down to the ICU at 4am just to hold her for the first time after surgery. I've re-entered her hospital room over and over on the morning that Nora was disconnected from so many cords and lay ready to transfer to the CPCU. I've watched them remove the oxygen and the chest tube and all of the stickers. I've heard her satisfied breaths after finishing her first full bottle! I've seen her way too small in her going home outfit and I've watched Kevin carry her inside our home for the very first time. I've watched her sleep in her own bed. I've smiled a thousand times at the very first smile she gave and at the first coo she made. I've watched her grow, and gain weight, and defeat so many odds. I've heard the doctors say, "She looks great," over and over again. I've seen her eyes open wide and watch me smile and sing to her. I've watched as she magically latched on to breastfeed for the first time at 8 weeks old. I've seen her strain for a big poop and laugh when we dance in circles and I kiss her neck over and over again. I've seen her grandparents hold her, our friends admire her and I've spent so many hours snapping picture after picture of every moment with this little girl. I am absolutely madly in love with this baby. This fighter of a girl who is braver than anyone I know and somehow captured the title of hero with her very first breath.

Nora is making huge progress. We are slowly saying goodbye to each complication from surgery and watching our little baby become a happy, smiley, poop-factory of a girl. She has passed her swallow study and is eating lying on her back. It's been a battle, and re-learning how to eat at 10 weeks old is hard when you've been doing it a different way for 9 weeks. Her heart is healing great, and a second surgery is much further from our minds. She is able to have breastmilk once again, and she can nurse up to twice a day now. She is stretching and moving and cooing and doing all the baby things.

And Nora also has Turner's syndrome. I've said it before, and I'll say it again. Turner's Syndrome is no reason to freak out. And it's not. I have friends tell me, "I completely forget she has Turner's Syndrome. I just see an adorable baby girl." HOORAY! That's wonderful. But, the truth is, I can't forget. After getting a diagnosis for Nora 17 weeks before meeting her, that diagnosis became all I knew. I knew her heart wasn't quite right, her lungs had some struggles, her neck had a hygroma, her feet and hands were swollen, she likely didn't have ovaries or at least not functioning ones, her legs were abnormally short and her head was very small. All things that are totally ok. But can haunt you if left alone for too long. I only knew the things that were "abnormal" about Nora. I didn't see her beautiful smile or her red-tinted hair or those blue eyes. I couldn't see her. So now that I can see her, I see her for all of her beauty. And I love what I see. But it's not as though I don't see the thick skin of her neck and that her hips and legs are a little smaller. I realize her hairline is lower in the back. And it's totally OK- that's just our Nora girl. But I see it. I see Turner's Syndrome in her, and I know that's why we went through heart surgery. I know she is in the 3rd% because she has Turner's Syndrome and I know that there are so very many more things that we could potentially be up against in the years to come because of Turner's Syndrome. I don't hate Turner's Syndrome, it helped create my baby girl exactly as she is. But it has an impact all the same. Turner's Syndrome is a chromosomal abnormality which in its classification alone can cause for some big thoughts, deep thoughts, thoughts that are sometimes hard to think. And, I know that one day Nora is going to have to think these thoughts. She is going to have to wrap her mind around that missing chromosome. She is going to have to wonder why she has a heart defect, a giant scar. Why she can't have children of her own, and she is going to have to endure shot after shot of hormones. She is going to be just fine. She is going to grow big and strong and be a happy, healthy wonderful little fighter that we all can't live without. But she has Turner's Syndrome. And it isn't something she will ever forget, so it's not something I'm ever going to forget either.

Each night before tucking Nora into her crib at night I read her books. A favorite is one titled, "Bedtime Prayers." It's poetry. It begins each stanza the same way, "Thank you God in heaven..." So, today I shall thank God in heaven.

Thank you God in heaven for our Nora Grace
Thank you God in heaven for YOUR grace
Thank you God in heaven for your strength and guidance and for carrying us.
Thank you God in heaven for giving us faith.
Thank you God in heaven for the ability to endure.
Thank you God in heaven for all of the family and friends we've been blessed with.
Thank you God in heaven for this day and the next.
Thank you God in heaven for the joy and happiness we've had.
Thank you God in heaven for our sense of humor to give us smiles.
Thank you God in heaven for watching over Nora.
Thank you God in heaven for all of the things.
Thank you, Thank you, Thank you.

Two Months!

Something I loathe: The grocery store. Before I had Nora I would do anything to not have to grocery shop, including shamelessly tricking Kevin into having to do it. I have been to the grocery store now twice since December. I would absolutely LOVE to grocery shop again.

Because of Nora's heart and lungs we've been on house arrest hiding from RSV. On Saturday our nurse came and gave her the shot to protect her from RSV and right about the time I was about to yell, "WE'RE FREEEEEEE!" the nurse reminded us, "No recycled air for this baby."

Buuuuuummmmmmmmmmmmmeeerrrrr. On house arrest we remain until April-May(ish). RSV can go into May and Nora will receive a shot monthly until the beginning of May to ensure she is safe. Though the shot helps, it doesn't prevent her from getting sick, and if Nora gets RSV the likelihood of her finding a bed at Children's again is high. So, we visit her grandparents, we see the occasional friend at their house, and we go outside when the weather permits- PLEASE STOP SNOWING COLORADO! I actually look sooo forward to doctor appointments so we can get out of the house. Some weeks I step out the front door once or twice. This mama is stir crazy!

I know what you're thinking. "Deidre, just call me! I'll come watch Nora and you can get out." Yes, thank you. I am doing that. I get out from time to time. But that's not really what I'm craving nearly as much as I want to take little Nora with me to see the world! I don't struggle leaving her, our hospital stay taught me how to be separate from her quickly- but I just want to take her around with me and do fun stuff. Isn't that half the fun of having a little baby? To show her the world, to teach her new stuff, to enjoy life WITH her?

Ok, wait. Maybe that is ALL of the fun of having a new baby? Well, I'm probably exaggerating. We are having fun exploring our living room and stuff, but here is the truth ladies and gentlemen: having a newborn is HARD WORK. I know millions of people do this every day. And I know that it's just not that big of a deal in the end. And some people are like "Oh yea, everything is perfect all the time." Well, they either have a maid and a nanny or are LYING. For real, guys, having a new born is tough. You wake up a 2am EVERY NIGHT to feed, then there is the pumping, the baby puke on the couch, the dirty dishes that don't get done, the clothes that you STILL don't fit into, but also your maternity clothes look weird. There is the wearing three bras to go on a run and the "WHY IS MY BABY BREATHING LIKE THIS?!? IS THIS NORMAL?" There is the, "my baby's poop is strange, do you think this looks strange?", the "WHY ARE YOU CRYING?" and the please, please, please pray at the doctor they say everything is fine. We spend a ton of time confused and worried and figuring out how to be a family, not just a married couple. We are tired, tired, tired, and also, I'm starving. WHY DOES NURSING TAKE SO MANY CALORIES? Having a baby is hard. And I'm totally loving it, but let's not pretend it's a piece of cake folks. It's for sure like crab legs dipped in butter- really tough to eat! but SOOOOO delicious. Heart surgery or lymphatic system problems, or paralyzed vocal cord aside, babies are stinkin' cute, and stinkin' tough. And no matter how severe or minor your baby's struggle may be, it feels like the end of the world to you. It just feels like a lot. No matter who you are or where you are. And as for us.....we're still in the living room. Or sometimes in the bedroom. I CANNOT WAIT TO BE OUTSIDE or IN A STORE or SHOPPING! (I don't even like to shop. But I really want to shop).

In the mean time, Nora celebrated her two month birthday yesterday! She also reached a milestone: 8 weeks since heart surgery. This means we can hold her under the arms, we can let the incision get wet in the bathtub, we can quit cleaning the incision constantly. By golly, perhaps I can even forget about that incision for a bit! Not only that, but Nora Grace FINALLY made it to 8lbs! It was just barely 8 lbs, but she made it! I have no idea why, but this was a big milestone to me. The next goal is for her to eat 3 oz at each feed. She is very close! Then, I'm hoping we can bust out the 0-3 months attire soon! In the last two weeks she has also moved from the low-fat formula to breastmilk! YAY! Our freezer supply is finally starting to be put to use! We have started to nurse as well- Nora didn't take much convincing to latch on, she just did it! We still have to practice to make perfect, but she is getting milk. We can't nurse often yet as she is on fortified breastmilk, meaning it is mixed with formula in order to have a higher calorie count and fatten her up a bit. :) More calories= more growth, more healing. And finally, we've visited an opthamologist regarding the droopy left eyelid. Nothing to be concerned about- it's not impacting development and in time it will get stronger and stronger and open wider and wider. At time right now you can't even tell it is droopy, and other times it's very obvious. But, it's getting better!

Nora Grace is getting stronger, more awake, more interactive every day. She is smiley, and whiney, and that paralyzed vocal cord doesn't seem to be inhibiting her ability to let us know she is angry! She has many expressions to show off lately and I just love sitting around and staring at her.

Loving bath time!

Hippie for a day!

Impatiently waiting for the bottle to warm.

burps.

Party at 3am!

Puppy love!

Pumped on the stuffed elephant hanging there.

Luna loves her!

Celebrating making it to 8 lbs!

I don't know how to rotate this- but here she is sleeping in her crib like a big girl! 

Soooo funny.

My favorite face!

Mom LOVES dressing her up!

We don't get much time to just sit around though. There is still much work to be done- physical therapy must happen every chance we get. This isn't as often as our therapist would prefer but with her constant acid reflux sending her food up, we can't lay flat and practice very often. But we do when we can, see:

tummy time with back and hip support.

loosening those hip flexors!

arm rotations!

post therapy play time!

There are still many hurdles to leap, but Nora continues to leap them in her own time. Next week is a huge week! We spend one full day at Children's to visit cardiology and then have a repeat swallow study. During her cardiology visit we hope to learn more about the VSD in her heart and if it's closing- meaning we could avoid the second heart surgery. A good outcome for the repeat swallow study sure would help with eating. Right now we eat in a side-lying position that makes feeding a bit of a struggle. If she were to pass this swallow study she can eat on her back again like most babies eat! In order to pass she has to eat a solid amount while lying on her back with no aspiration. If she doesn't pass we are looking at a side lying position for what sounds like another six months or more while taking in fluids.

We continue to struggle with acid reflux. Right when it feels like we get it under control and more of the food is staying in than coming out, something changes. It's a little frustrating. But Nora is still gaining weight, which is the important thing. As long as that continues we just have to practice patience and wait for it to improve with age and strength.

We continue to pray that the lung masses are disappearing, the hole in her heart is closing, and the vocal cord isn't impacting eating any longer! We also are praying for sunshiny warm days and that mommy and daddy make two months more before we can take Miss Nora to play with us!