The Year in Review

As 2012 comes to an end, and I sit back and think of all it brought to our family, I can't help but get a little teary, and think about how awesome God is.  Wow.  From welcoming another baby into the world, surgery after surgery after surgery, relocating to Kansas City for a short time, moving our entire family to another state, and  starting a new job in a new school district, we have gone through A LOT!  I am so very thankful for all the help and support we have received over the last year from family and friends, and so very thankful to have survived one of the darkest times of my life with all of Lia's  health complications.  Thankful for my amazing husband who got me through all of this, and thankful for my wonderful, perfect, children who God has entrusted me to nurture and love.

Our year in review:

January/February:  We spent these months trying to get through the last weeks of my pregnancy!  We were preparing to welcome a new baby girl into the world!  Little did we know then I was a high risk pregnancy and what God had in store for us.

March:  We welcomed our beautiful daughter, Lia Michele into the world on March 26th.  What started as a routine induction turned into an unscheduled c-section due to Lia's decreasing heart rate.  She was 7 lbs 6 oz, and although she was blue (which we didn't know for about 12 more hours was due to lack of oxygen getting to her lungs) she was beautiful!

Now a family of 4!

April: (be prepared, this is a long month....)  Those happy moments of celebrating the birth a new baby quickly turned into tears when we discovered Lia had a heart condition called Tetrology of Fallot (overriding aorta, pulmonary stenosis, ASD, VSD) and unrelated to the Tetrology, a backwards aortic arch. Whew!  Although I know more about these medical terms than I ever thought possible, it's still a mouth full!

First, they told us she would need a surgery sometime in her first year of life, and that we were fine to go home.  So, thats what we did, we went home and tried to settle in.  However, at Lia's one week appointment, she had a blue spell that took her a very long time to come out of.  They put her on oxygen quickly and sent us straight to the PICU.  We never went back home.  After a few days in the PICU in Wichita, it was decided that Lia would not be able to wait until she was 1 to have her surgery.  So now, we were trying to buy some time to get her to 8 lbs before they opened her sweet little chest up and preformed surgery on her heart (which at the time was the same size as a man's thumb).  They do not do the type of surgery Lia needed in Wichita, so it was an ambulance ride to the airport where she was life flighted to Kansas City's Children's Mercy Hospital.  My home for the next 6 weeks.

Wichita PICU

Flight nurses preparing to load Lia.

Those of you who know what your hormones are like after having a baby, will understand how hard it was for me, to see my week old baby, loaded up into this machine, whisked away by ambulance, and loaded onto an airplane, WITHOUT ME. At this very moment, Ryan was not with me.  He was home packing our bags so we could head to KC in our car.  My mom was there, and I was so thankful.  I could hardly talk I was crying so hard.  I'll never forget this moment.  Never.

Once in Kansas City, we were in intensive care for a few days when they decided Lia was healthy enough to move to the floor, out of intensive care.  She lasted less than 24 hours on the floor, and couldn't keep her o2 levels above 50% so it was back to intensive care for us, and Lia was moved to the top of the cardiac surgery list.  Her first surgery was to insert a shunt to allow more blood flow to her lungs.  This surgery was not a complete repair to her many heart defects, only a surgery to buy more time to get her bigger before they did the full repair.  We went into this surgery with the understanding that once she healed, we would go home for a few months, and then come back for her full repair once she was bigger.

They let us walk all the way to the operating room door and let me carry her the whole way.  When I handed her over, I of course lost all control.  Bawling.  Sobbing.  Praying for the best.  My family escorted me to the waiting room where we sat, and sat, and sat.

We heard that she was back in the PICU and that everything had gone well! Until the next day, when an echocardiogram revealed that her shunt was not working properly.  So back to the OR it was.  This surgery was a shunt revision.  After surgery #2, we received word that was was back in the PICU and they had found a small clot in the shunt, which was probably the reason it wasn't working.  A couple days went by, and Lia's oxygen levels were not where they should be after a shunt surgery, so another echocardiogram revealed that the shunt, again, was not not working. (again, remember those post partum hormones??  Yeah, this mom was a mess....) Her cardiologist, Dr. Lofland, sat down and talked to us.  He said that due to the fact that she would have to go back on bypass for a 3rd time, it would be best to just go ahead to do her full repair.  So now, after two failed shunt surgeries, she would be going back in for a 3rd time for a complete repair.  A surgery that is risky on anyone.  Especially risky on a 3 week old who barely weighs 8 lbs.

We were SURROUNDED by support from friends and family.  So many of our family and closest of friends made the trip to be in Kansas City for Lia's full repair.  You may remember from my blog post that day how at peace a I felt.  I was nervous and scared of course, but I was calm.  Different than the first two surgeries.  I knew that God was in control of the situation.

Lia's full repair was a success!  We still had our share of hurdles after surgery though, she developed Chylothroax, suffered from a collapsed diaphragm during her last surgery, and lost her ability to 'suck'.  We worked hard with occupational therapy, and she eventually learned how to take a bottle again, which meant we didn't have to go home with her feeding tube!

Lia with all her medications (to the left) and the ventilator (right) after surgery.  She looks like a little doll laying there.

My sweet sweet girl, swollen from all the fluids they had to give her to keep her stable

The first time she opened her eyes after all the sugeries.  I cried and cried, it had been DAYS since I had seen those beautiful blue eyes

My parents and in laws would bring Jack to KC to see us when they could.  I cherished those few hours once a weekend that I got to be with him.  I love that boy.

It had been over 2 weeks since I had gotten to hold her, and this was the first time.  It felt so good to have her in my arms again!

Such a big miracle in such a tiny girl!

 May:  When May rolled in, we were still at Children's Mercy.  Lia got to move to the floor to finish her recovery.  Finally out of intensive care!  Ryan and I moved out of the Ronald McDonald house and started to sleep next to her in the room once she was on the floor.  I had to skim my breast milk due to the Chylothorax, we spend a lot of hours with OT, we were trained on how to take care of her once we were dishcharged, and she continued to need less meds, was more alert, and we began to ween her off all the monitors.  Finally, we got word that Lia would be able to go home!  She got her staples out, chest drain removed, and then had to pass the dreaded car seat test.  She had to sit in her carset for 3 straight hours with no monitors going off. Three hours was the time it would take us to get home.

3 hours in car seat with no monitors going off!

More and more arrangements were made for our discharge.  Follow up cardiology and pediatric care appointments, prescriptions to fill, and infant CPR classes.  Finally, after the longest 6 weeks of my entire life, we were told we could go home.  Home!  Home to live as a family of 4, to see Jack, to sleep in real beds, to see Jack,  to actually use the baby things we had bought for Lia, and to see Jack. Can you tell I was excited to see Jack? As we passed the nurses station for the last time, the nurses waved and cried as we left.  Lia was like one of their own.  She often spent time at the nurses station when they would make us leave the hospital for dinner or fresh air.  We still keep in touch with several of our awesome nurses at Children's Mercy.  We will never ever forget them!

We decided not to go home to Wichita.  Instead, we drove straight to Norwalk to stay with my parents.  I was nervous about caring for Lia without any nurses telling me when it was time for meds, or any monitors to tell me how her heart rate and oxygen stats were.  Having my mom help me take care of her was really helpful.  A few weeks turned into a month that we were with my parents, and we decided that we would like to stay.  Stay for good.  We had been wanting to relocate back to Iowa for some time, and we thought there was never a better time.  Ryan and I both began to search for jobs.

June:  I was called mid-June for an interview with the Southeast Polk School district, located about 25 min., from my parents house.  I was soooo nervous for my interview, but prayed about it and knew that whatever God had in store for us would happen.  Well, the same exact day of my interview, I was offered the job!  It was for a special education position, something I had never taught before, but I was so thankful for the opportunity, because it also meant we got to stay in Iowa!  I tearfully resigned from my 1st grade position in Wichita, and we began plans to pack our house in Wichita and move.

July:  July marked the big move!  My parents kept the kids while we went to Wichita with my in laws to load our stuff and say goodbye to friends there.  It was sad, and emotional, as so many major events in our lives happened in Wichita.  My first job, Ryan's marriage proposal, Ryan's graduation from Wichita State,  Jack's birth, Lia's birth, etc... Wichita, KS will forever hold a special place in our hearts.

August:  Ryan and I celebrated 4 years of marriage and I started my new job at SEP.
September:  Up until this point, Lia had been seeing her cardiologist once a month, but at our September appointment, we found out that she was doing so well we could start spacing her appointments out to every three months!
October:  Jack got his new glasses!  We knew he would have to get them someday, but weren't sure when.  After his semi-annual trip to the opthamologist, in addition to his nystagmus (diagmosed at 14 mo.) we discovered his astigmatism and nearsightedness.  I of course was sad when I found out he needed them, and even shed a few tears right there in the doctors office, but he sure does look cute in them, and can see so much better!  October also marked some of the cutest Halloween costumes you ever did see!

New glasses!  Notice Douglas was along for the ride!

My handsome blue Lego!  Jack's costume was made by Daddy!

The prettiest, friendliest ghost ever!

November:  Jack turns 3!

December:  It's so hard to believe that December is here, and in fact, almost over!  2012 brought a lot of ups and downs for our family.  Through all that happened, we have tried hard to remember that God is in control of everything, and has a plan for us.  Although we are still living with my parents, and Ryan hasn't started at John Deere yet, we are confident that God's will for our lives will show itself.  Thank you to everyone who continues to pray for us!

I think this picture sums everything up:  Blessed.  We are so very blessed.
We hope all of you have a wonderful Holiday season, and look forward to what 2013 has in store for you!