The Jelly Chronicles Blog
11 months ago
Dear Finley, Happy Birthday!
Dear Finley,
Happy 1st Birthday to my sweet princess! What a year its been! I have said this a million times in the last month and its so true - I can remember the day you were born like it was yesterday. Your first few moments in this world, and the quiet moments we shared that night after everyone left the hospital. My beautiful little girl with that full head of black hair - so precious and so perfect. The way the next several hours, days, months would unfold was certainly not what we expected - you've changed us - undoubtedly for the better.
That first day at the hospital was like slow motion - I just wanted to hold you - because that's what mommy's do with their newborn babies. We should be at the hospital - not THIS hospital - Lake Forest Hospital - ushering in well wishers and introducing the world to our little princess. Instead your daddy and I watched the cardiology fellow do an echo that lasted for hours. I wanted to tell you that it would be okay - but in reality - I didn't know if that was true.
The next few days and weeks were the hardest time of our lives. I was angry and confused. I felt unbearably guilty. Had I done this to you? I replayed my entire pregnancy in my head - this was surely my fault. As we got to know you though, those thoughts and feelings began to subside - replaced with the understanding that you were brought to us for a reason. And while I am a firm believer that everything DOES happen for a reason - I know that reason might not immediately be evident. But one thing I did know - I knew that you were going to profoundly touch the lives of every person that would know you. We would be better parents - we would come to know what truly is important in life. All of that worry that came flooding in those first few days and weeks - the worry about how you'd be accepted and how, with the disabilities you had - how you would be a happy child. And then we saw the world through your brother's eyes and those fears started to go away. When he sees you, he doesn't see that long pink scar down your chest, or your g-tube or feeding pump - he tells us "I drank milk through a plugger when I was a baby too right?" And then we started to think about and know that you would be a perfectly happy baby/child/adult. That we needed to set aside our preconceived notions about what you'd do with your life - because your life will be perfectly normal - YOUR normal. And we will make it the happiest life that it can be!
From day one we have been in awe of you. You have been through so much yet needed so little. From the moment you started to smile when you were 8 weeks old - that smile has come easy to you - even when for most it wouldn't. That smile has been a beacon for us - its been the thing that comforts your daddy and me and tells us that you're okay. And I have told many, many people this before - without that beautiful smile, this journey would be a lot harder on us. We LIVE for that smile Finley. We really do.
You have become our teacher. You have shown us that we shouldn't sweat the small stuff in life (and frankly a lot of it IS small stuff!), that anything is possible with a little hard work, that we should appreciate every moment that we have because you just don't know what tomorrow holds, and that its important to show gratitude and give back. The other thing we've learned is that its important to keep perspective. It was easy those first few days and week to feel sorry for ourselves, to feel like somehow what was happening wasn't fair, yet in reality as we looked around us every day at the hospital, it was easy to see that things were good. There were so many other children and families enduring things on such a different scale than us - and we learned from them too. We so deeply felt their pain and we rejoiced in their victories and we shared a special bond because only others who have been there truly know.
And as we begin your second year, only good things await you Princess Finley. We shall celebrate every day, every milestone and every achievement as though its the first. We will work to make this life your perfect life. We will give you whatever you need to be happy and healthy and we will continue to be your students, allowing you to shape who we are and who we've yet to become. One thing that your daddy and I discussed very early in all of this, when we were tossing out all of those preconceived notions about what you think your child's childhood holds is that we'd make your normal the BEST normal. And that as long as you were happy - nothing else really matters does it? Your happiness is our happiness my sweet girl and we are committed to making sure that you have the best doctors and therapists and to making sure that we are educated so that we can advocate for you and made educated decisions for you. This is our priority now and in the future and we just know that you are going to do big things Finley! We want you to dream big and go after those dreams with every ounce of energy that you've got. And if the strength and courage and inspiration that you have shown us in this first year is any indication, I would say that you will be able to achieve whatever you set your mind to! You are an amazing little girl and every day I thank you for giving me this opportunity to be your mommy. I love you sweetheart. Happy Birthday to you and may this year be the best one yet!
Love you tons!!
Mommy
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Finley's Medical History
Born on 8/8/2009 - Finley is taken to Children's Memorial Hospital via the transport team 12 hours after she is born. She is having trouble breathing and is turning blue. She is immediately admitted to the NICU.
8/9/2009 - Finley is diagnosed with Tetralogy of Fallot, a congenital heart defect and laryngomalacia, a condition that causes her to aspirate whatever she swallows in to her lungs.
8/21/2009 - Finley has open heart surgery to place a Blalock Taussig shunt to help facilitate proper blood flow. When she is older, she will require a full repair of her heart.
9/10/2009 - Finley is released from the NICU. Because of her laryngomalacia and reflux, she is fed 100% through a nasal gastric tube.
9/14/2009 - Finley is re-admitted to the hospital for an infection in her surgical wound. Finley's genetic test comes back - she is diagnosed with CHARGE Syndrome.
9/15/2009 - During a CT scan to assess the infection, the doctors notice something strange on her CT. It appears Finley has a malrotated bowel and will require surgery.
9/23/2009 - Finley is examined by the opthalmologist and she is found to have colobomas, a condition common with CHARGE Syndrome, in both eyes. The degree of her visual impairment is unknown.
9/30/2009 - Finley has the Ladd's Procedure to correct the malrotation and also has a g-tube placed.
10/7/2009 - Finley has a sedated ABR to check her hearing. She has a mild hearing loss in her right ear and a moderate to severe loss in her left. Her loss can be at least partially corrected with hearing aids.
10/8/2009 - Finley is supposed to be released from the hospital today but she has been having low blood sugars. The endocrinology is called in to evaluate her.
10/29/2009 - Finley is finally released from the hospital with a unconfirmed diagnosis of hyperinsulinism. Actual diagnosis requires fasting blood tests - because of her heart condition, it is not safe for her to fast. She needs to have her blood sugar tested every three hours and we are taught how to administer an emergency glucagon injection in case her blood sugar gets to low.
11/1/2009 - Finley requires emergency injection because she cannot sustain her blood sugar. She is taken to the local ER and transported via the transport team to Childrens Memorial.
11/10/2009 - Finley is discharged from the hospital on a 24 hour continuous feed. We add polycose to her milk to help her keep her blood sugar at an acceptable level.
11/22/2009 - Finley is taken to the local emergency room with a bad cold - she is having trouble breathing and her oxygen saturations are low. She is transported via the transport team up to Children's Memorial.
11/25/2009 - Finley is released from the hospital - just in time for Thanksgiving.
12/8/2009 - Finley is taken to the local emergency room for observation - she has a bad cold.
12/21/2009 - Nate is chasing the dog and the dog runs in to Finley's IV pole, knocks it down and pulls out her g-tube. She is taken to the ER at Childrens to have it put back in.
2/10/2010 - Finley is admitted through the ER at Childrens - she has a bad cold again. Oxygen saturations are low and breathing is labored.
2/13/2010 - Finley is released from the hospital.
4/17/2010 - Finley is taken to the ER at Childrens - she has pus draining from her belly button. They suspect a urachal cyst - they send us home with orders to return on Tuesday (during our scheduled visit) for an abdominal ultrasound.
4/20/2010 - Finley is admitted to Childrens for an overnight stay. She will have a swallow study and abdominal ultrasound on Tuesday and a CT and sedated echocardiogram on Wednesday which will require anesthesia.
4/21/2010 - The anesthesiologists have trouble intubating Finley, so they call in her ENT to have a look at her. He observes that her airway is 75% closed off - partially due to scar tissue from previous intubation and partially due to an infection. The diagnosis is subglottic stenosis and may require her to have surgery on her airway. She is immediately admitted to the PICU and put on a 24/7 breathing treatment and antibiotics and steroids to help reduce the inflammation.
4/26/2010 - Finley is well enough to be taken off of all oxygen. Immunology and Infectious Disease are called in to examine Finley because the culture of her throat are growing staph and strep. Infectious Disease is trying to figure out what could have caused her infection. Immunology labs will be drawn to determine if Finley has an immune problem which sometime occurs with children with CHARGE. This is the second significant infection she has had since she was born.
4/27/2010 - The lab calls to say that they mis-read Finley's airway culture. It's not growing staph - its only growing strep.
4/28/2010 - Immunology labs are back and don't show anything significant. Finley's lymphocyte counts are low but that isn't unusual for a child who is fighting an infection. The doctor wants to re-examine her before her first birthday. In the meantime she cannot have any live vaccines.
4/29/2010 - Finley is discharged from the hospital. The ENT will do a bronchoscopy before her heart repair surgery to determine next steps on her airway issue.
5/11/2010 - Finley has open heart surgery to repair her heart.
5/17/2010 - Finley begins to show signs of infection which is later identified as a urinary tract infection.
5/25/2010 - Finley is discharged from the hospital.
5/30/2010 - Finley goes to the ER at Childrens because of fussiness, sweating, heavy breathing. And echo later identifies that the pressure gradient around Finley's pulmonary valve is an astounding 90%.
6/1/2010 - Finley is admitted to Childrens to try a medication called Propranolol to help ease the pressure in her heart.
6/2/2010 - The Propranolol brings the pressure in Finley's heart down from 90% to 50%. Finley has a positive test for C. difficile which will require antibiotic treatment.
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6 comments:
What a great Love note to Finley on her first birthday! Happy Birthday, Miss Finley! Have a lot of fun at your party! Lots of Hugs!!! Molly, Melissa, & Dennis
Tracy,
That was one of the sweetest birthday wishes ever. Thank you for sharing all of your milestones over the last year of your sweet little Finley with us. I have never met her but because of you, I feel like I already know her. I wish you & your family continued happiness with your little girl & many more birthdays.
Big Hugs for Finley & a Happy 1st Birthday,
Crystal
Tracy what a beautiful note to finley it made me cry she is amazing and an inspiration to everyone. You too are amazing tracy I still remember the day we walked into the NICU and we saw that little girl with the head full of black hair so beautuful, and this past year we all have been through so much but I thank god for so many things and one of them has been meeting you guys. In a way we have been through it all together because I feel like more than anyone else you understand me.
Tracy,
It was a pleaure meeting Finley yesterday. She is such a beautiful little girl. Her smile, her eyes, her beautiful hair. Everything about her is beautiful!
I hope she enjoys her special day. While it did rain the sun eventually came out for her.
Again, like other said thank you for sharing Finley's progress, your outlook and you families life with all of us. Just reading your stories inspire me to be a better person.
Amanda Marshall
What an amazing birthday letter to an amazing little girl from an amazing mom and woman! My life is richer for knowing you! I'm looking forward to Finley's second birthday!
Sylvia
Awwwwwwwwwwwwwwwwwww. This post is so beautiful! Happy 1st Birthday to your baby. What a gorgeous name. I just love that!
I am visiting from your comment at Enjoying the Small Things today. So nice to meet you : ). I hope you have a wonderful first Birthday celebration!
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