Tuesday, February 22, 2011

A brief history of us - Part 1 - The Bad and Ugly!

 Many of you have been asking about the medical events in our lives the last few years so I'll attempt to give you a brief recap of the craziness!  This is part one..the bad and ugly.  I must add a Part 2:  The Good and beautiful because throughout all of this we have been so blessed with joy, love, beauty and amazing miracles.    That will be my next post.

So here's the Bad and Ugly...The Good to come next post:

A few months after celebrating our first anniversary,  I found out I was pregnant with our first child.  I miscarried early on.  We were heartbroken with this loss.  We could not get my hormone levels back to normal.  So I went through a DNC.  No luck.  Then received a chemotherapy treatment.  Finally two and a half months after the miscarriage my numbers were normal.  After grieving that loss and the medical drama that went with it, we got pregnant again.  We were terrified for a while, but once we reached  18 weeks we began to feel like everything would be ok.  I was due December 20th.  On September 26, my birthday, my car wouldn't crank.  The ignition wouldn't turn.  After working with it a bit, I called my husband.  He came home and I took his truck to work.  It wasn't until that evening that I found out all that had gone on in my absence.  The dealership sent a tow truck to bring in the car.  Let me interject that I'd only had the car two months.  Upon arriving at the dealership, the mechanic and tow truck driver were unable to get the car off the tow truck. The mechanic crawls under the car ( still sitting on the tow truck - at an incline).  While he's under the car, it comes loose and drags him off the tow truck and down an embankment behind the dealership.  My first new car ever.  I'd been driving my used Toyota Camry since I was 16.    The car we bought so we'd have something new and reliable for our first born child.  
Of course our first concern was the mechanic. But there was little we could do about that except pray.  So we had to take care of getting a car for the 28 week pregnant woman to travel to and from work.  The dealership and tow truck company were in dispute over whose fault it was.  In an effort not to look guilty the dealership would do absolutely nothing to help us.  No rental car.  No loaner car.  No repairing our car yet they still had it.  They basically said I'm sorry, but we can't do anything right now.  Three days later I went into labor.  The hospital did everything they could and helped my son stay in the womb until I reached 29 weeks 2 days.  Conrad was born weighing 3 pounds 3 ounces and went straight to the NICU. 

Conrad in the NICU on his birth day.

He was 10 days old before we held him.  

Most amazing feeling in the world.
My favorite NICU pic of Conrad.  So sweet.  A few days before he came home.  Look....no tubes or needles!
He spent 50 days in the NICU fighting for his life.  He came home Thanksgiving weekend.  
We were on house arrest due to flu season until March, but were thrilled to have our beautiful son, Conrad home.  Much to our surprise, in April we found out we were expecting our 2nd son.  My OB wasn't too concerned  as they'd found no cause for Conrad's premature birth.  Still my husband gave me a shot each week to prevent preterm labor.   Did I mention that we had to move from our tiny two bedroom, one bath, 900 square foot absolutely charming home in Crestline Gardens while I was pregnant.  The house sold immediately and we had nowhere to go.   One week before we had to move out of our house, we had no where to go.  So here I am pregnant with a 9 month old trying not to go into preterm labor with no place to live in a week.  I called every rental we could find and even extended stay hotels.  Rentals laughed in my face and extended stay hotels would've eaten through our new home down payment in a heartbeat.  So I swallowed my pride, it was a big gulp, and e-mailed everyone I knew.  Hallelujah, a former colleague saved the day.  Her husband and some friends were trying to flip a town house, but were dragging their feet finishing it.  We moved in and rented it which bought the guys some time to take a break before finishing it.  In the middle of all this, an ultrasound reveals that our unborn child has an extremely swollen abdomen.  We were sent to specialists at UAB who had us return each week for special in-depth ultrasounds.  We were told it was likely hydrops which has a very small survival rate.  Each week we had to come with a bag packed because if they saw any swelling elsewhere in his body a hydrops diagnosis would be made and we'd be hospitalized for the remainder of the pregnancy in able to sustain his life as long as possible.   At 30 weeks, I woke up and he was on his way.  Despite a team of nurses and doctors rushing to stop labor, our second son, Teague came that day.  Due to the swelling he weighed 4 pounds 4 ounces, but almost a pound of that was excess fluid.  He looked so pitiful when he was born.
Teague in the NICU on his birth day.  Can't tell as well b/c I had to crop the picture, but his poor tummy is huge and this is after he looked better.  When he was born he was purple, dark purple.  And he didn't cry.  It was terrifying.


After he tee-teed of the extra fluid.  Notcie all the excess skin on his tummy
Sweet baby



More swelling.  He would swell, get diuretics, swell again, get sick.  It was such a rollercoaster for this poor guy.


Proud big brother.  It was so amazing.  I took Conrad with me once a week for about 30 minutes to visit.  When we went in all the nurse wanted to see him, but he always stared and pointed at Lenwood's bed.  he wanted to go there first.  Somehow he knew and he loved...oh, how he loved that baby.

First time we help him.  It was only briefly while they changed his bedding, but we were so excited!

First family photo

He was a week old before we held him.  The NICU ran around 100 tests to determine the cause of his abdominal ascietes (swelling) and found no cause.  He was a very sick baby and had many ups and downs in the NICU before coming home after 60 days on Christmas Eve.

People kept asking if it was easier to have a preemie the second time because I'd done it before.  No, it was excruciating.  As a mom, you know what I mean when I say that when your baby is born every part of your being desires to nourish and care for that child.  With a preemie, you can't.  I remember my chest aching for the feeling of my child lying against it.  When Teague, my second child, was in the NICU it was even harder because I felt like I had to choose one of my children everyday.  Do I spend time with my child fighting for his life in the NICU or my child whose entire life has been turned upside down. 
But finally our little family was together and everything was going to get better.  We had a few bumps in the road.  Conrad had several multi-day stays in the Pulmonary Care unit at Children's Hospital including his third Christmas.  Teague had several stays at Children's as well with testing to determine the extent of the damage his extremely severe reflux had already done to his stomach and esophagus in his short life.
Teague having one of several 24 hour ph probe studies at Children's Hospital
But, we were getting answers to both of these and medical treatment that made both livable.  It had been a tough road, but we could not complain.  We had two beautiful boys who were happy and healthy.  We were so thankful we had been so blessed.
Soon after Teague's first birthday his gastrointerolgist (reflux doc) found some suspicious results with his immune system.  We were sent to an immunologist for further investigation.  His immunoglobins were extremely low and were not at a level high enough to protect his body from illness and disease.  In addition, his body was not using his vaccines properly so they were not of any use to his body.  Thus began Mommy's new role as a nurse.  Each week, I would put two needles in Teague's arm that would remain in for about an hour while a concoction of donor immunoglobins went into his sweet body.
Teague with his infusion bag.    He could carry his pump around in the bag and play while the meds were going in.  He was SUCH A BIG BOY!  I couldn't have been prouder of him handling this so well.

This went on for over a year.  His immunoglobins were doing a little better, but were still low.  Currently we are on a trial of Teague off of his immunoglobin donations.  At some point he may go back on possibly for the rest of his life.  Each day we pray that his body will make immunoglobins so he won't have to endure this. 

So, you think this might be the end of our drama...but no.  Last February, we found out we were expecting again.  As you can imagine a range of emotions filled us.  We were thrilled to bring another child into our family and terrified at what might happen.  We had not tried for more children because we didn't feel right putting them through such a tough start.  Apparently God had other plans.  Our third son was due September 2010.  His was a very dramatic pregnancy as my OB felt certain he would come early.  I spent many nights in Labor and Delivery with signs of preterm labor.  I spent several different weeks in the hospital with contractions.  I was put on bedrest, weekly shots and pills every two hours that made my heart race so badly that it took me fainting (which I'd never done in my life) for them to take me off them.  They tried another pill that didn't work and after another week in the hospital I was put on a terbutaline pump.  Needle in my leg 24 hours a day constantly pumping me full of medicine to stop contractions.  Around this time, they discovered that my third child also had a very swollen abdomen and the fearful weekly watch for hydrops began with him.  At 31 weeks 4 days, my OB called me.  She had run some tests on my liver and the results were frightening.  I was in the beginning stages of liver failure and had to be admitted to the hospital.  I was diagnosed with HELLP syndrome, a rare form of preeclampsia.  In the wee hours the next day, as my liver panels worsened, the baby went into duress and was taken via emergency c-section.  Lenwood weighed 4 pounds 10 ounces. 
The neonatologist removed 10 ounces of fluid from his abdomen that day.  He was very, very sick the first few days of his life.  Another miracle happened in our lives and he began to turn around.  He struggled and fought for 63 days before coming home a week after his due date.  One of the hardest parts of Lenwood's NICU stay was the change in visitation to the NICU.  Conrad and Teague did not get to meet Lenwood until the day he was discharged from the NICU.  Everyday they begged to go with me to see Lenwood and every day I had to try and explain why they couldn't.  Some days they cried.  It was so heartbreaking.  It was bad enough that I had to wait 10 days, 7 days and 14 days respectively to hold my children, but 63 days for my sons to meet their baby brother was heart wrenching.
Lenwood coming home!

Yet, we were so grateful and felt we'd been granted another miracle.  How could we be so blessed to have so many scares and walk away with a miracle each time?  One gracious God.
On January 6, 2011 we found out that sweet baby Lenwood possibly has a rare (and by rare I mean he'd be the 6th diagnosis in the world) kidney disease.  Here we are in limbo again waiting, terrified, and praying for yet another miracle that we don't deserve, but one that this sweet baby certainly deserves.
I think this might be the first time that I've sat down and really thought through everything that has happened in the last 5 years.  Wow!  That's a lot.  But to me, the amazing part is they joy we have shared together.  Through it all we have loved, and laughed.  I have certainly cried many tears and pleaded with God more times than I can count, but the joy of these three children outshines it all.  I love them more than I could ever describe in words and I would give anything to take away all that they have endured.