One week...

One week from today, my baby is one! (And as a side note, its also the day that me and my friend the pump are parting ways...) I haven't had time to post lately because we have been busy trying to get everything ready for the party.  I was telling one of my friends the other day that the worst thing about having a party at home - is doing all of the stuff that you have been procrastinating on doing around the house.  Remember that ceiling in my bedroom I was going to touch up MONTHS ago?  Still hasn't been done.  The basement needs to be cleaned. The stereo that was moved out of our old den last October before we started construction - yep - its still sitting in the dining room.  Its all of those things of course that will drive me crazy unless they get done.  I see this as a perfect opportunity to get them checked off my list - especially because I have the offer of Mike's help - because of the party - so I need to seize the opportunity right???  Well that leaves me with um, pretty much today only, because Mike is going to be out of town all week again.  Horrible timing.

This week we are awaiting the results of Finley's immunology tests - for which I received the EOB from the hospital yesterday.  $1,700 for lab tests.  $1,700!!!  Blood work only - not even doctor's charges.  Fortunately for us, insurance should cover it.  Every time I get these bills, which based on the claims files I've downloaded off the BCBS IL website, would total over $1,000,000 in billed charges at this point.  A million dollars.  I know a lot of people are opposed to health care reform - but I believe it needs to start somewhere.  This might not be the plan that makes the most sense, but it has to just START.  There are too many people out there who have been financially devastated by our medical system - that needs to change.  But I digress...

Did I ever mention that having kids is the best thing in the world?

I love the way Nate puts his sister's arms around him and tells her, "see, I'm teaching you how to hug."

I love this crazy hair.  Which here, doesn't look so crazy - I had it tamed pretty well with a headband.  This is the exception though - not the rule!


I love this first tooth, that is so rarely photographed because she covers it up before I can get the shot.  And now the second one has completely broken through and is well on its way.  The other thing I love about this photo?  The fact that my princess is trying to feed herself!  She has gone from wanting nothing to do with that spoon and turning her head away each time it comes near...to opening her mouth and grabbing it out of my hand!


I love when Nate sings.  This morning its, "Scooby Gooby Goo Coming after you We'll solve a mys-ter-y!!!"  Yesterday it was Imma Be by the Black Eyed Peas.  And last week it was Telephone by Lady Gaga.  Its usually just a phrase or two - enough to just barely be able to make out what it is he's singing.

I love that Nate is the protective big brother.  Yesterday he brought us her hearing aid and said Mom.  Dad.  Fin was chewing on her hearin' aid.  Or when he points out that her milk is almost gone.

I love that Nate has become as elusive as the Loch Ness monster and seems to evade every photograph.



I love how Finley gets so excited and all at once does her Miss America wave with both hands while simultaneously kicking he feet.  And when you put her in her high chair, the feet go a mile a minute.


Every single day, there are so many of these things, that I hear and see that make me laugh. or bring a smile to my face and that make me feel so lucky.  I just love being a mom.

Sunday, August 01, 2010 | |

 

2 comments:

Sylvia said...

Tracy, you are truly blessed with two beautiful children...and they're blessed to have you as their mom!

August 2, 2010 at 12:14 PM  
Unknown said...

Finley looks so great...her hair is very tame in these pics! Can't wait to celebrate with you guys next weekend!! Also I love your stories about why you love your kids so much...I can't wait to be a part of that either soon :)

August 2, 2010 at 2:20 PM  

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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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