Monday, June 10, 2013

What Does It All Mean?

It is almost two years since our prenatal diagnosis with Lydia.  At 20 weeks my markers came back higher indicating there was a "risk" of having a child with Down syndrome.  I remember getting off that phone call and just sobbing.  My husband had just come home and he sent the other kids out to play.  He held me and we just we just cried together.  Looking back on it, I am not even sure why we cried.  We did not cry for a long time, but we cried.  It didn't take long to embrace the fact that our child may have Down syndrome, we were actually really excited about it.  However, I have to say that we had the wrong picture of Down syndrome.  We had the typical one; you know the one where they are always just so happy and fun to be around.  We never took into account the medical issues, the appointments, the stress, the finances, the extra things, the dynamics of the family (and let me point out here, they are not all bad...but nothing else was considered other than the typical stereotype).

I remember at the end of May 2011, I was on my hands and knees in our yard picking up shingles and nails.  I remember my belly hitting the ground before my hands did.  It was hard.  I really did not want to complain, but I was unsure how I would continue like this for about 3 more months.  My husband and I had always discussed pregnancy and the blessing it was.  We never wanted to "stress out" about the due date, so we often times tacked an extra two weeks on there.  Even though I was uncomfortable, we understood that God had His timing and we would trust that.  So, I really did not want to complain.

Towards the end of June we traveled North with my in-laws.  We stopped at a flower shop to look at these GIANT planters.  We wanted to take pictures to send to Eric's grandma.  However, in one of the pictures, I am turned sideways next to the planter.  I was much larger than this planter that would take two people to hug.  What a wonderful thought that it would take more than two people hugging me.  This was my third pregnancy so I knew that it was not completely normal to be this large.  Surely I had two little ones in there. 

I went into preterm labor on July 4.  They were able to stop it.  The doctor on call kept asking my why I was so big.  I told her that I did not know.  We had an ultrasound scheduled for the next day.  She kept asking, grilling me.  Then she mentioned Down syndrome.  My reaction was "so what"...but it bothered me.  She kept on.  I said that she was more than welcome to page my doctor and ask him the questions, I was explaining things as I was told.  That night, my husband and in laws and girls got to go see fireworks, I sat at home resting.  This would be the first of many separations for our family.

The next day was my husband's Birthday.  We had our ultrasound first thing.  We knew something was not right.  All they told us is that I had a TON of amniotic fluid and they would have to refer us to the Fetal Concerns Program in Milwaukee.  The ultrasound tech kept telling me that our baby's heart was just fine.  Ugh. 

Now we would have to wait.  However, I just could not.  I called right away to Milwaukee to get the appointment set.  Most of Eric's birthday was spent on the phone getting this appointment set up.  However, we were able to get one for the very next day.  I would not have to worry for too long.

We went in and had the ultra sound done.  They had to call in the doctor a couple of times to look at things.  It was long and I was uncomfortable and it was hard to lay on that table.  But we were able to see our baby, and a lot clearer on this ultra sound, and that was just fine by me!

The doctor came in and introduced herself and said that there is really no good way to say this.  Our baby has a heart defect and they do not detect a stomach.  They also said that I had probably just about the most amniotic fluid they had seen before.  They wanted to do a reduction and then I would have to be admitted to the hospital and most likely would go into labor.  But I was only 34 weeks along...I was not ready for this.  I sobbed and sobbed.

I asked if she could leave the room so I could pray with my husband.  I did not know what to do?  We prayed and prayed.  I remember calling my mom and asking her what to do.  How could I make such a decision without the advice of my mom?  But how could she provide advice when she was just as shocked and she had never been in that situation before.  But hearing her voice just provided comfort.  We also called our Pastor and his wife and asked advice.

That night I would be in labor for several hours.  I did not believe it.  I could not accept it.  When the NICU doctors came in to meet me, I said that I had an appointment in the morning and I would see them then.  However they said that I will most likely deliver baby tonight.

The next morning we learned that we were having a girl.  I had never found out with the other girls, but I was pretty much sure that I could not handle any more shocks.  I was shocked, I was pretty convinced we were having a boy.  I was so excited.  We also received the confirmation that our baby girl has Down syndrome, that her 21st Chromosome had one more than the usual two.

They also rushed me in to have an Echo done.  That was uncomfortable, and scary.  We were not sure what we were looking at on the screen.  No one was talking to us.  We had a whole lot of information to take in.  But in the end we found out that our little girl would have an AV Canal.  It was common and they were positive that they could fix it.

We met with the general surgeon and he said they would not be able to tell us what her diagnosis was until she was born.  They went through a huge list of possibilities.  One of the rarest ones that he went over with us, actually he told us that we did not have to worry about that because more than likely he was positive it was not....esophageal atresia.  We would not get the diagnosis until day two of life when she would have her first surgery.

The next couple of weeks were a blur.  I had to have my parents come and babysit me.  Preparing to have a baby when I was over an hour away from home seemed like an impossible task.  Little did I know that on the morning of July 25 when I would walk out of the house, I would not return for almost 6 more months.

We had her, Lydia Ann (we let her sisters pick the name so they could be more involved and had more ownership of their sister).  The room was filled with people.  Almost so many that my husband did not have a place to stand.  I begged for them to let me hold her before she was taken from me.  They allowed me one minute with her.  That minute the world stood still.  She was crying when they handed her to me and as soon as she was in my arms she was quiet.  We had a bond already and she was perfect.  Her tiny fingers and toes, her button nose, her beautiful eyes (we are still unsure of the color...but they are to die for!), her cute mouth and soft cry.

Just like that she was gone.  They did not even tell me how much she weighed or how long she was.  I had nothing to baby, no nurse, no husband...nothing.  I was alone in a cold hospital room.  My in-laws came in just minutes after.  There was no word on how my precious angel was doing.  All I could think of was getting to her, holding her, savoring these sweet moments with her.

They finally let me go down.  Moments after I peered over the bed, nurses were rushing.  I couldn't understand, she looked so perfect.  I was bleeding, I was hemorrhaging.  They immediately ran me back upstairs and had to fix me.  My mom was by my side and my husband came shortly after, with my in laws staying next to my sweet baby.  They finally got me stable after a couple of hours and 18 hours later Lydia was in my arms.  One of the sweetest moments.

In the next couple of months I would learn what true love is.  I would learn how to love in the hardest of circumstances.  I would learn how to have faith that could move mountains.  Trying to battle kids in different places, a marriage with my husband while he had to work (money had to be made to keep paying the bills).  Decisions had to be made with our baby.

With the help of both of our mothers, they stayed at the Ronald McDonald House to watch Ellen and Allison while I spent most of the days and nights at the hospital.  I had to learn about my baby, I had to know what was going on and I had to protect her.  She needed to have a bond, hear her mom's voice and have some kind of constant care.  While we had the most excepectional nurses, it is not the same as mom.  The hospital can be a scary place sometimes.

In the next couple of months we would endure some of the hardest days of our life.  Handing our baby over to our surgeons for MAJOR surgery.  We would now know the outcomes, but God was already here; He knew.  We had to have faith and trust in God that He would carry us through.  Watching as you daughter lay there, completely lifeless, not breathing, monitors straight lining and completely helpless.  Trusting that God brought the right doctors and nurses to work that day who could care for your child.

The next couple of months would lend hand to some of the best experiences.  We had pictures taken, we were able to take our baby for her first walk, and she would even meet her cousins for the first time.  We would be featured on a radioathon.  The girls would be able to attend many things that we could not afford to do because of the generosity of other people.  We would make relationships that were life long, meet some of the most amazing people.  Our marriage would grow in ways that we could not explain.  Our children would learn some of life's hardest lessons along with some of the greatest joys they would ever know.  Our life would not be the same, but we were changed.  We understood the meaning of love, sacrifice, actions, words, and how to enjoy every second of every day.

Coming home would be one of the best days of our lives.  Learning how to handle Lydia at home would be very challenging, but what we learned in the hospital, how our faith had developed, would get us through.  Many, many days of loneliness and isolation would set in.  Watching as some of your best friends would walk away, but in their place new ones would bloom.  Lasting ones, ones who are there because they love you and accept your family for who they are...all of them.  Worry and fear became part of my every day.  However, there was a peace that helped me that came from God...He had took us through the days of the hospital so I was able to get through some of these hard hard days at home.  There were no nurses to interfere with taking care of your baby, no doctors to page to ask questions, and no other support people who were available to talk to or encourage you.  Life was different, but God helped guide us and gave us strength to tackle this mountain too!

Weight issues, feeding issues, health issues, keeping Lydia protected from germs, making sure she did not throw up and aspirate, feeding tube and the decision of when to take it out, family dynamics, marriage strengthening, leaving Lydia with a qualified sitter, having her be able to be away from mom without crying herself into a panic, traveling...these are just some of the bumps that we had to plow through.  While there will always be a hurdle to get over; there seemed to never be a break for quite a long stretch.

Looking back I see how God's Hand has been guiding us and directing us.  He has given us very specific challenges and obstacles.  We have failed miserably through them, but we have learned and we have come out stronger on the other end.  It has been amazing to watch His Hand at work in our lives.  He is one amazing Creator and He certainly knows what He is doing and what I need better than what I know I need!

There are days when I want to point my finger and shout at people to explain to them who Lydia is.  There are days when I am just filled with joy because God has blessed me with this amazing daughter.  There are days when I am so overcome with these emotions from this ride we have been on that it is hard to pick myself up.  There are days when I can't stop staring at my girl and think wow, I was chosen to be her mom.  There are days when I feel like I need to educate everyone on who Lydia is...she is not Down syndrome, she is the most amazing little girl who will capture your heart and teach you more than you thought was possible.  Most of all, I just need to find a balance in her, but I am so overcome with who she is as a person that it is hard to not want everyone to experience her.  But it is my journey and I was blessed enough to experience it.  So I write to try to explain it, trying to keep in mind that no one every will quite understand, but that is OK.

In conclusion, we found out today that she reached a new milestone....she is now at 19 pounds.  It is a HUGE day for us as she continues to gain and eat well.  It is huge because we have been able to finally see a little light at the end, to experience a routine and Spoor normalcy in our house.  What an amazing feeling that is.  We understand that the next valley is most likely around the corner, we don't take this mountain top experience for granted by any means.  All of this is what it means that she met this milestone of 19 pounds.

Psalm 28
To you I call, O Lord my Rock; do not turn a deaf ear to me.  For if you remain silent, I will be like those who have gone down to the pit.  Hear my cry for mercy as I call to you for help, as I lift up my hands toward your Most Holy Place.  Do not drag me away with the wicked, with those who do evil, who speak cordially with their neighbors but harbor malice in their hearts.  Repay them for their deeds and for their evil work; repay them for what their hands have done and bring back upon them what they deserve.  Since they show no regard for the works of the Lord and what his hands have done, he will tear them down and never build them up again.  Praise be to the Lord, for he has heard my cry for mercy.  The Lord is my strength and my shield; my heart trusts in him, and I am helped.  My heart leaps for joy and I will give thanks to him in song.  The Lord is the strength of his people, a fortress of salvation for his anointed one.  Save your people and bless your inheritance; be their shepherd and carry them forever.

1 comment:

  1. wow what a story! I understand exactly how you feel. Thank you for sharing. She's a beautiful girl!!