Saturday, December 31, 2011


I told Al today that I was going to title this post '2011- Good Riddance' because at first glance, this year has been so hard and my gut instinct is to feel like it has not been one of our better years. Of course, Al pointed out to me that 2011 has been our first real year with Max and Addie, that we've fallen in love with them this year and that the first year of their lives has, of course, been super precious. Then I went back and looked at old photos in my endeavor to make a baby book on shutterfly and wow, it's amazing to see how far we've come in 2011. And to realize that although it has been a rough year, it has been a year of progress, miracles and hope. I look at these pictures of tiny babies and then I look at where we are now and I feel blessed knowing that we are ending 2011 far better than we started it. And because of that, I can't say good riddance to 2011. I will, however, happily say welcome to 2012! Firstly though, a recap of 2011. I included the medical highlights for those interested. Otherwise you can just scan through the photos!

-Max and Addie are diagnosed with Congenital Nephrotic Syndrome (01/17)
-The babies are transferred by ambulance to the big hospital in the city (01/18)
-Addie develops a life threatening Strep B infection (01/18)
-Max and Addie begin swelling and need to start albumin treatments (01/31)

-Al's parents visit from Australia (02/01- 03/02)
-Addie goes to surgery and has her first Broviac or central line placed (02/02)
-Max goes to surgery and has his first Broviac or central line placed (02/09)
-Max develops a UTI and becomes septic, requiring a week on the ventilator (02/10)
-Addie masters eating without a feeding tube (02/12)

-I return to work (03/10)
-Addie is diagnosed with 'neutropenia' or poor production of a type of white blood cells and is transferred to isolation for a week (03/10)
-Max has a bronchoscope and is diagnosed with traechomalacia (03/14)
-Addie's central line comes out of place and she goes back to surgery to have a new one placed (03/16)
-Max masters eating without a feeding tube (03/28)

-Max masters breathing on his own without any assistance from a canula (04/22)
-Max and Addie celebrate their first Easter in adorable smocked clothing (04/24)
-Max and Addie both have their first nephrectomy, or the removal of their left kidney and the placement of the peritoneal dialysis catheter (04/25)
-While in surgery, Max has a new central line placed and both babies have a hernia removed (04/25)
-Max and Addie begin smiling! (04/24 Max and 04/25 Addie)

-Addison's second central line comes out of place and she goes to surgery to have it replaced (05/19)
-Max and Addison do not pass their 'newborn' hearing screen (05/23)

-I finish school for the summer (06/03)
-Hannah arrives from Australia (06/03-06/17)
-I turn 29 (06/16)
-Max and Addison both have their second nephrectomy, removal of their remaining kidney (06/24)
-While in surgery, Max and Addison have an ABR hearing test and both are diagnosed with likely profound hearing loss
-Max and Addison begin peritoneal dialysis using manual dialysis done by a nurse (06/26)

-Max's central line is removed and he has not had one since (07/02). Addison's is also removed only to have to place it again within the week.
-Addison is diagnosed with congestive heart failure meaning her heart is struggling to pump due to fluid overload (07/05)
-Addison goes back to surgery to recieve a fem line or type of central line in order to recieve IV heart medications (07/06)
-Addison stops breathing due to pulmonary edema or fluid in her lungs and has to go on a ventilator for 4 days (07/10)
-Max goes on his autocycler! (home dialysis machine (07/14)
-Addison is recovered and we are able to remove the central line as she is off IV heart meds (07/27)
-Addison goes on her autocycler (07/28)
-Max and Addison stop eating on dialysis and return to needing tube feeds (07/29)

-Max moves out of the NICU and onto the pediatric floor (08/04)
-My mom, Al and I get trained for home dialysis (08/08-08/12)
-I go back to work for the school year (08/15)

-Al's mom gets to come and stay with us and the babies for the next 7 weeks (09/03). Al's dad joins her in October
-Wonderful month full of visitors, growing at home and us all getting to be together every night

-Max and Addie's blog begins! 10/03)
-Max and Addison have a repeat hearing screen and are diagnosed with moderate hearing loss (10/05)
-Max spends one night in the hospital for high blood pressure (10/08)
-Addie gets her first tooth (10/14)

-Aetna approves Max and Addison to be transplanted at Children's Memorial Hermann (11/02)
-Max and Addie are dedicated at Crossroads Baptist Church (11/6)
-Awesome Thanksgiving week all together at Nana and Papa's house (11/20-11/26)
-Addison begins grunting and is admitted to the PICU for 'pleural effusion' or fluid in her chest cavity (11/28)
-Addie undergoes surgery to remove the area of her chest cavity accumulating fluid (11/30)

-Despite initially promising news regarding Addie's surgery, she is unable to stay on peritoneal dialysis and it is decided she will start hemodialysis (12/13)
-Addie goes back to surgery to have a hemodialysis catheter and second chest tube placed (12/14)
-Addie has her first hemodialysis session (12/14)
-Addie's second chest tube is successfully removed (12/19)
-Addie returns home after 22 nights (12/20)
-MAX AND ADDIE TURN 1!!! (12/22)
-I recieve the news that I have been approved to be Addison's kidney donor (12/23)
-A very merry Christmas with both babies home is had! (12/25)

And so that was 2011. Max spent 242 nights in the hospital and had 3 surgeries. Addison spent 268 nights in the hospital and had 8 surgeries. So I am ready for a new year and praying for more nights at home all together, fewer surgeries and complications and well, less drama! But, never in a year have we learned so much about God's faithfulness, about our own strength and about the value of our family and close friends. I leave 2011 a better person than I came to it and more importantly I leave it with the two most precious babies who have captured my heart. I fell completely in love in 2011. And I learned that loving your baby will break your heart and it will make you feel like you can fly. It is radically life changing. So I hope I will always look back on 2011 as the year that God worked many miracles in my babies and in my own heart. And I pray for his continued faithfulness and guidance as we start 2012 with a baby on peritoneal dialysis, a baby on hemodialysis, Max about to get a lot of neurological testing done and Addie's transplant date the source of hot debate in the hospital. We are starting the New Year with a lot on our plate but with great anticipation and hopefulness for what God will do this year.

And to all of you who read and pray and love and care, thank you for seeing us through 2011. We are very blessed by all the love bestowed upon us and hope you'll join us in 2012 as Max and Addison's amazing journey continues...

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