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.
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