About Maddie

 

   Madeline Lucy is my husband's and my fourth child and first girl. We kept the gender a surprise and I was overjoyed when, on February 1rst, 2009, we welcomed a little girl after having three boys. 

 

    Maddie was born with VACTERL association. The letters stand for different abnormalities of the body, which happens long before the mother knows she is pregnant. Maddie has the whole spectrum: Vertebra, Anal, Cardiac, Tracheal, Esophagus,Renal, Limbs. Many of the issues have been taken care of with surgery, but as she grows others have manifested themselves as life-long problems. She has had eight surgeries since birth and we anticipate more in her future.

 

    We noticed very quickly that something was wrong, but didn't understand the severity as it was to all come in the days, weeks and now years to follow. Twenty-four hours after Maddie was born she was taken to Dartmouth Hitchcock in Lebanon, New Hampshire, because of finding a hole in her heart, then two days after that to Boston Children's Hospital, as another hole was found. There she had open heart surgery to repair three holes in her heart. Our little fighter came out of surgery with her heart patched up and to this day her heart is fine and does not need observation!

 

    When I wasn't near Maddie, her little heart would slow down, her oxygen would drop, but when I was close by kissing and holding her little hands, her heart would beat faster and her oxygen levels would improve. It was truly amazing.

 

    A week after her open heart surgery, Maddie flat lined from choking on some milk, but was quickly revived.  Boston discovered the Tracheal-Esophageal fistula. Dan and I had continuously questioned why she kept choking and this was the initial reason why I sent her to the nursery that first night of her birth. She had surgery in Boston to repair the fistula. 

 

    Three months after her birth she had her third surgery, which was to repair her anal fistula. This was very traumatizing, because of the long painful process after the surgery to expand the new anal opening. Maddie was on antibiotics to prevent kidney infections so her bottom skin would break down and bleed, she could not pass stool without medications, enema's and suppositories. These were painful for her and I often felt like I was torturing my own child and felt helpless. We landed in the ER several times for kidney infections and blockage. She had a Ce-costomy surgery which was difficult for Maddie to recover from.  She spent the night vomiting and in horrible pain. I wondered what kind of mistake I had made, but fortunately it got better and it has been a life saving surgery for her. 

 

http://giforkids.com/procedures/cecostomy-mace-procedures/

 

 

     Winter 2009, Maddie had two hand surgeries in Boston; her left hand has four fingers as the thumb had grown like a polyp; they moved her pointer finger and made that her thumb. With the right hand they warned me that they might not be able to save the thumb, but I burst into tears and I was quickly consoled that they would do everything to save her other hand, which they did. Boston Children's Hospital still follows her.

 

     I love her little hands;  Nickle Creek has a beautiful song called "The Hand Song" which I sing to Maddie. Not long ago, Maddie was hospitalized with a severe kidney infection and she was sick for weeks afterwards. During this time I started Maddie's Hands Cards to help distract us from her pain and also to thank those who donated to help us get her to Boston Childrens for evaluation.

 

    Although she had the TE fistula repair, she does not have an appetite and nibbles like a mouse on food and we supplement with Pediasure three times a day,  just to make sure she has nourishment.  Boston Childrens follows her for swelling in her throat near her surgery site and treats her for gasterointestinal disease. She is also followed by New Hampshire feeding and swallowing specialists as she has a swallowing delay.

 

    Maddie has had Kidney Reflux surgery, Tethered Cord Spinal surgery, and Ce-costomy surgery which was replaced with a g-tube to flush out her bowels. She struggles with eating, and GI issues, but many other health related issues have been kept at bay. I often tell people, when they with good will say how well she looks, that we have to force health on her. Every day we have to watch our Maddie because she could get an infection, or had enough fluid or food, is she having bladder or bowel issus, does she need a rest and so on.

 

    She has many appointments a year, proceedures and possibly several more surgeries in the near future. Maddie often suffers from headaches, fatigue and has a difficult time gaining weight. One illness can set her weight back by three or more pounds; which for a little peanut like her, is big deal.   This is the VACTERL reality. 

 

    I have often taken a ride on the hope and prayers of others, as it is difficult watching my little girl suffer and have complete trust that all will be well, but I know we are held in the arms of our Creator, our Comforter, and that He is and always has looked after our Maddie and our family.

 

Are not five sparrows sold for two cents? Yet not one of them is forgotten before God...Indeed, the very hairs of your head are all numbered. Do not fear; you are more valuable than many sparrows ~ Luke 12:6