Welcome to my home on the internet. I am a middle aged, fluffy, stay at home mother to five kids. Life is not perfect, but it is great! If you want to witness someone struggle with a special needs child, her faith, her marriage, weight loss, and life; you found the right spot. If you were hoping for perfection, keep looking. I have a great sense of humor and I love to uplift and pray for others, so send requests or drop me a line.

Madison's Story

Madison's Hospital Photo


Madison was born on Thursday, January 28th, 2010 at 11:20am.  She came two weeks early after an ultrasound told our perinatalogist that she had outgrown the accommodations.  Madison is our fifth child, and our fourth daughter.  I have battled gestational diabetes with every pregnancy and have given myself more shots that I can ever begin to count.  We delivered at a University Hospital about 80 miles from our home. My sugars were hard to control towards the end of her pregnancy, so we were expecting her to grow fast, just not quite that fast.  She weighted 10 lbs and 2 oz when she was born.  She was 20 1/2 inches long.  She had the cutest, chubbiest cheeks I have ever seen on a baby.  She definitely had the football linebacker shoulders expected when a baby is baked in a sugar oven. When she was born, we thought everything was perfect, she scored a 5 on her first Apgar, so she was taken to the nursery for her first round of check ups, a bath, and all the other normal new baby stuff.  We soon realized their was nothing normal about Madison.  She proceeded to poop a LOT of meconium all over the doctors examining her.  The foolish nurses didn't remember the part of my birth plan that told them under no circumstances was she to have a bottle, so they let our little piglet eat 3 oz of formula about 30 minutes after she was born.  Shortly after the poop and the bottle, she started getting pretty sleepy.  Because of my gestational diabetes they were checking her blood sugar every 15 minutes, and it was okay at birth, and it started sinking from there, like a rock.  The pediatrician in the nursery called our room to let us know that they were going to have to give her some sugar water.  Chris went to be with her at that point.  About 30 minutes later I was told they were starting an IV, to just give her glucose by IV, not continuously, but just a bolus every so often.  This went on for the next 12 hours.  At one point her sugar was only 18.  I can't tell you in words how it made me feel. I had failed her.  Obviously my sugars were not as well controlled as we thought, because she wouldn't have struggled to find her rhythm if I had done my job well. You will notice in her birth photo that she has her right arm covered by the sheet she was laying on, and she is wearing the ugly hospital kimono, that is to cover the IV that was in her arm.  It didn't come out until late, late Friday night.  Saturday morning we were told that her newborn jaundice screen had come back high enough they were starting her on light therapy immediately.  I thought that was the end of my world.  I wanted to go home Saturday and start life as a family of 7. I cried and wept and was just a general mess.  She spent 36 hours under the billi lights at the hospital.  Sunday afternoon we were sent home with a billi blanket to use for the next week.  We were also told we had to see our local doctor on Monday for another billirubin test to make sure her jaundice was getting better.  Monday morning we got up and I have to say she was ORANGE no one could deny that things were headed in the wrong direction.  We went and had her labs drawn Monday at 11am at our local hospital.  We went to her newborn check up appointment and were met with the news that she was going back to the hospital, but this time we got admitted to the local hospital, 6 blocks from our house.  We spent from Monday until Thursday hanging out in the pediatric ward watching our little girl glow under the blue lights.  Thursday morning as her jaundice levels appeared to be going down and staying down the nurse noticed that her respiration rate was extremely high and she was "see saw" breathing.  She fussed and picked and annoyed the doctor until he finally ordered a chest x-ray to check for pneumonia.  That is the day we realized Madison was far from ordinary.  Two hours after the x-ray the nurses came in to say something was wrong with the x-ray.  Madison had Situs Inversus and Dextrocardia.  I had no clue what that meant but it sounded very scary.  Our family doctor called us on the phone and told us that it appeared that Madison's heart was shaped funny and that all her internal organs were backwards in her body.  We could go home today from the hospital, but we would need to go to a Children's hospital about 100 miles from our home the next week and meet with Pediatric Cardiologist to make sure Madison's heart was functioning OK with it being misplaced in her chest.  We did the only thing we knew to do, we took her to church and had her prayed for!

On Wednesday, February 13th Chris and I took Madison to Children's Mercy Hospital in Kansas City, Missouri to meet Dr. B in the Cardiology department.  I don't remember much of that appointment other than the group of people that wanted to watch her ECHO, because only about 1 in every 10,000 people has Situs Inversus, so she was hot stuff that day, until they realized for whatever reason (miracle or medical stupidity) her heart and other organs were perfectly placed.  Dr. B came back into our room and said, 

"Your daughter does not have dextrocardia or situs inversus.  But she does have a Congenital Heart Defect.  There is something wrong with her aorta, the main artery that leaves the heart.  It is quite narrow in one section.  This is called a Coarctation of the Aorta"
Thus began our trek to special circumstances. That one paragraph and drawing changed everything.  We were taught the signs of Congestive Heart Failure in newborns.  We were given pager numbers and phone numbers.  We were told we would be seen every 2 weeks for a little while, until the doctors could determine how her heart and aorta were going to grow and change in the coming weeks.

Every thing went along normally until the middle of March.  Madison was restless and irritable.  She didn't like to lay down to sleep and I had taken to sleeping with her on my chest every night.  On March 17th I realized that she was just getting to be to irritable to ignore anymore, so I called our local doctor to have him look her over.  He was on vacation.  His oh, so sweet, nurse practitioner told me she would look Madison over for us.  I took her in and was told the rash on her face was a normal newborn rash, and our doctors office didn't have newborn blood pressure cuffs, so we weren't really sure how to check on her heart.  Her murmur was pretty pronounced from the back, the one tell tale sign of a Coarctation of the Aorta, but their was no "gallop" when listening from the front.  The nurse practitioner decided to call the Pediatrician that was covering for our doctor.  He told us to meet him at his clinic at 5:30pm so he could evaluate Madison.  After checking her blood pressure on both arms and both legs, checking her pulses, and listening to her really well, he decided that she was doing okay and we shouldn't be worried, but if we still didn't feel OK, to call the cardiologist.  So I did!  Friday morning we went to Children's Mercy Hospital prepared for the "you are over reacting" talk.  Four hours later Madison was admitted to the cardiac floor with an admitting diagnosis of Congestive Heart Failure.  We were told that she was to young for a cardiac catherization to "balloon stretch" her narrowing.  She would be undergoing heart surgery in the coming days.  On March 24th, at 8:10 am I handed Madison to a surgery nurse and watched them carry her away.  She was 7 weeks and 6 days old.  That is almost the hardest thing I have ever done!  She did very well during her surgery.  On March 29th we were able to bring her home better than new we were told.

Madie girl in the PICU moments after her heart surgery.

My sweet girl just after her surgery to repair her heart and save her life.
Madison's Coarc Repair scar
We were told wrong.

In mid-April we were seeing a lot of the same type symptoms that we had seen just before Madison's surgery. I can say that April 14th was one of the worst days I have ever had as a mother.  By that time we were seeing a Gastrointerologist at Children's Mercy because everyone could agree that Madison had reflux.  With her heart condition our local doctor didn't feel comfortable overseeing her care.  I called the GI clinic that morning thinking Madison just wasn't feeling good, maybe her tummy was hurting. After speaking to a nurse in the GI clinic, we were referred to Cardiology because she was less than 4 weeks out from surgery, called and spoke to a nurse in Cardiology, was told to call GI because her heart was stable now and we didn't need to bother the doctors in Cardiology. Back and forth we went, over and over that day, I called my way up the hierarchy of nurses and doctors until everyone finally agreed they could nothing over the phone and we need to come to the hospital and be seen in the ER.  The ER doctor ended up admitting her because she was so little and she had just had heart surgery.  We ended up with a discharge diagnosis of a viral illness.  The nurses arranged it for me to meet with an Occupational Therapist because Madison would turn blue while eating her bottle, she would also sweat, I mean her hair would be wet from sweat, sweating.  I was trained on how to "pace" Madison while she ate.  I did this with every bottle until July!  It was the first of many incidents of no one wanting to take responsibility for Madison's care.

Mid-May we spiked a high fever and she was just generally cranky.  We did the round about on the telephone with none of the doctors thinking her symptoms fit into their specialty.  We ended up back in the ER.  They drew blood, took a urine sample, and sent us home saying she was stable.  The next day we had a checkup in the GI clinic.  We asked about her lack of weight gain and growth and were told that she wasn't throwing up so her reflux was not that bad.  I left that appointment and went downstairs to feed Madison in the lobby of the hospital.  She was still running a fever, she was now having almost constant diarrhea, she was lethargic, and I knew deep inside me something was wrong.  I couldn't figure out what to do.  Do I take her back to the ER?  Do I drive the 100 miles home?  Do I sit in the lobby and cry?  I opted for C~sit in the lobby and cry.  Then I got in the car and demanded that Jesus heal her because we were going home.  When I hit level 2 of the parking garage, my cell phone rang, it was Children's Mercy calling :-O  It was the ER doctor that had seen us the night before, she had a horrific UTI, almost to the potentially lethal level.  He told me that if I wasn't within a 30 minute drive to the hospital, he was sending the helicopter for her.  He was shocked to learn we were in the parking garage.  She spent four days in the hospital receiving antibiotics by IV to help her feel better.  Interestingly enough Dr. B's wife was our general pediatrician for the stay :o)  she helped me communicate some of my concerns about Madison to Dr. B.

About the beginning of June was when we started really seeing some real big changes in how she ate, i.e. she didn't like to or desire to. Madison would go until 1 pm before demanding her first bottle of the day if I didn't get up and make her one and feed her. She was also turning blue with every feeding.  When I say she was turning blue, I mean her face would get really splotchy, with red, then purple, then blue splotches.  Her eyes would water and she would sweat like a race horse.  By this time we had found a great pediatrician in our hometown.  Madison was getting weaker and weaker, turning blue more often, and she was very lethargic.
Madison asleep outside on a "bad" day (notice how pale she is)
I took her to see Dr. T (the awesome pediatrician) on June 8th.  We came back for a weight check on June 10th, I was not shocked that Madison had lost 8 oz in 2 days.  Dr. T started making phone calls to doctors in the city and we went home to pack.  We were admitted once again to the cardiac floor and assigned to the cardiac doctors.  I have to say this was one of the hardest hospital stays we ever had.  I was belittled, talked down to, and outright told that I was wasting the doctors time and his resources.  Whatever was wrong with Madison was NOT heart related.  I had never demanded it was, but on the other hand, because she kept turning blue when eating, I wanted their help figuring out what was wrong.  By this time Madison's oxygen levels in her blood were dropping to the unsafe range and hovering there virtually all the time.  Everyone should have 98 to 100 percent oxygen in their blood, a normal brain needs 93 percent to grow and mature, Madison's were hovering right around 93.  No one cared or could figure out why.  She gained weight in the hospital.  We were dismissed with a discharge diagnosis of Feeding Mismanagement and I had to be "trained" on how to prepare and feed a bottle before we could check out.  I was humiliated and left feeling completely abandoned by the hospital.

Shortly after that stay Dr. T sent us to a different Children's hospital in our area to have a Upper GI preformed.  It showed that Madison had severe reflux.  Her stomach contents were washing up to her thoracic opening multiple times during the test.  Her stomach contents entered her sinuses twice, penetrating the sinuses above her eye sockets once!  We are talking Severe Reflux!

Armed with the Upper GI and her symptoms we went to see her GI specialist again in mid July.  After reading the report and a typed list of all her symptoms he apologized.  He told us that he had failed to see how severe her reflux was and that drastic times call for drastic measure.  He arranged for Madison to be admitted to the hospital so we could place an NG-Tube (nasal gastric tube) in her nose and she would no longer eat by mouth. There are assorted add ons I could do, but I won't today.   Madison takes 100% of her formula intake by  Feeding Tube.  She tries her darnedest to eat baby food, but doesn't do it well.  We had a g-peg button placed on December 28th, 2010. 
Tired Madison with her NG tube
 


Madison did in fact receive her g-peg on December 28, 2010, she was a trooper, but she had a lot of pain post operative.  This seems to be Madison's normal.  She takes about twice as long to recover as others seem to.  We think this has a lot to do with whatever makes her special, but as of today that is still unknown.  She has rallied through the last few months with several stays in the hospital for feeding issues and we have added a new fleet of doctors, in an attempt to help her feel better.
Madison with her new feeding tube.  Now she "looks" normal.
In the last few months we have added a Pulmonologist (lungs), Genetics, and an Otolaryngologist (ears, nose, and throat doctor) to Madison's list of doctors.  We are trying to help Madison breathe better and feel better.  That is our goal.  She had ear tubes placed on May 10th at Children's Mercy Hospital by our fabulous ENT.  We also found out that day that Madison has a small cleft in her Epiglottis that may be responsible for some of her issues with swallowing.  If Madison needs to have her tonsils removed, we will be giving her steroid shots to "beef up" the opening of her Esophagus and lungs.  Keep an eye on the blog for news of future plans.
Our sweet girl eating dinner with us (notice the white tube just behind her left arm)

Madison's first birthday, she is enjoying a nice meal of purple duck.
Madison continues to be one of the joys of our lives.  Her constant smile and babbles of delight remind us that even in her discomfort and issues, she is here with us for a reason and a purpose.  Her little squeals of delight melt my heart daily.  We continue to pray daily for God to heal her fully.
Madison's 1st birthday, her pink and purple outfit with matching duckie.

Our Beautiful girl...she is one of my heroes!