Blame it on the pump

Yet again, its been a long time since I have posted.  All I can say is that its been busy - home, work, etc.  All busy.  And I blame it on my the pump.  M breast pump that is.  You see, when I was still pumping, I would update my blog in the morning when I pumped first thing.  It was a perfect time to do it and since I've stopped, I haven't been so good at making that time.  That being said - I've got a lot of pictures to post!

I was in Richmond, VA this week for work.  I have to say, I can only take the airport in doses but I do really enjoy the people watching.  There crowd of people at the airport never disappoints.  I often find myself wondering if some of the people in the airport are aware of themselves - of what they are wearing, of their personal space, of the fact that they aren't the only person on the airplane.  I found myself thinking things like "They call those 'skinny' jeans for a reason", "Is that a wig?", "We get that you are a very important businessman, but can that very loud cell phone conversation wait until we get off the plane?"  And of course - BOTH of my flights were delayed - and so of course I chuckled when I say the United sign at the airport that said "We're number one in on time arrivals of all the big 4 airlines!"  Really? Remind me not to fly on those other ones.

Last weekend we went to the zoo.  It was Finley's first trip to the zoo and Nate's first trip this summer.  We had a lot of fun - Nate of course didn't want to go home at the end.  It actually worked out quite perfect - the zoo was open until 7:30 pm - we got there around 3 in the afternoon and we got a parking spot right in the front.  Finley chitter chattered the whole time and crapped out right as we were waiting in line for Sting Ray Bay.  And since strollers weren't allowed in some of the exhibits - I had to carry her.  WHOA! She is heavy!!!  Some pictures from our outing.













You may notice in some of those pictures above that Nate is only wearing one sock.  This has been his standard attire for more than a week now.  Talk about being a quirky kid - he got a small boo boo on his foot - which I am certain by now has healed a million times over, but he insists on keeping his boo boo covered up.  That while sock in the picture was BLACK by the time I finally got him to put it in the laundry. It could have walked on its own.  I did eventually get him to take it off one day after his bath, he went to bed without it and then as soon as he woke up, he asked for another sock!  This time he wanted blue - so now he just keeps saying "Look mom - its not dirty!"  I am said - yeah - that is because you just can't SEE the dirt!  Anyway, the Michael Jackson of socks is going on a week and a half of this now.

This morning I FINALLY had some time to put away all of Finley's fall/winter clothes.  In addition to the clothes she got for her birthday, we were VERY fortunate to receive and absolute TON of 18 month clothes from Amanda Marshall from her daughter Peyton who had outgrown them.  It was so much fun to look through all of the stuff she sent us and put it all away in Finley's closet - there were so many things I actually ran out of hangers in Finley's closet!  Thank you Amanda!!








This week Finley goes for a kidney scan at the hospital on Friday.  This is the test that will determine whether or not she had any kidney damage when she had the UTI after surgery.  If there is no damage, she is supposed to be able to come off of the prophalactic antibiotic that she takes and we won't have to see the urologist anymore!  YEY!

As a side note, this weekend is Eric and Kathy's 36 Hour Radiothon for Children's Memorial Hospital.  I have to go drop off my change jar today, but if you have a chance, please tune in to 101.9 FM and listen to the telethon.  Then donate.

We didn't end up filling it to the tippy top - but not bad!

Saturday, September 11, 2010 | |

 

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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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