Wednesday, April 13, 2016

The most important blog post I'll ever write

Over the last few days I have thought a lot about John Isaac's little heart. It is amazing how a person can live with a heart defect and show little to no sign that the heart is not functioning properly.  People who meet me and see John Isaac are completely unaware that there is any problem. And unless you know what to look for it's easy to miss it.  In a few short weeks we will place him in the hands of a surgeon and (God willing) that surgeon will fix John Isaac's heart.  We have been told that it should take one surgery and that is it but we have also been told that while his heart will function well enough to enable him to have a full, active life it will never function the way a healthy heart with no defect would.  You see, even after his heart is fixed it will still be broken.  There are a lot of risks with this surgery, but without it he definitely will not live.

As I think about all of these realities it occurred to me that we all are like John Issac.  We are all born with a heart defect.  Our defect isn't a physical one but a spiritual one, and while our hearts may function properly to physically keep us alive, we are spiritually dead (Eph, 2:1, Col 2:13). When we come into this world our hearts are deceitful (Jeremiah 17:9) and we do not seek God (Romans 3:11).  Our hearts are broken and we need a physician to fix it.  It is not something that will repair itself, or that we can fix on our own.  Jesus is the great physician, He says that He came to heal the broken hearted (Isaiah 61:1, Luke 4:18). But the amazing thing is that when He heals our hearts. He says that He doesn't just fix the heart that we have but rather he gives us an entirely new heart (Ezekial 11:19, 36:26).

At the end of the day John Isaac's physician can fix his heart but he can't heal it. That is only something the Great Physician, Jesus Christ, can do. It is a miracle I experienced almost 20 years ago. I can not explain how it happens I just know that it does. If He can do it for me, then I know He can do it for you too.

Saturday, April 09, 2016

2 months old already!!

9 weeks old already. I can hardly believe it's been over two months. For the most part it's been life as usual, just the normal stuff that comes with having a new baby in the house. The only major difference has been the slow weight gain. I'm used to chunky babies but getting weight on this little guy has been very difficult. We are finally seeing gains with the coconut oil. He's up to 8lbs 5 1/2oz. Whoop!! He is starting to smile a little bit, but not consistently. He has a little dimple on his face by his mouth that is so cute. His therapy sessions are going great. He is trying to roll over and is holding his head up better every day. This child is going to be so spoiled by the love and attention he gets from his siblings. We all adore him.

We head back to the cardiologist next Tuesday so prayers that the doctor will have wisdom about when his surgery should happen would be appreciated. And also pray for peace for me and Michael. When we are just living life every day with him it is easy to forget that he is sick because he shows very little sign that his heart isn't functioning properly (which is a great thing). But when we go to the cardiologist it is a reminder that there is a big problem, that he is sick, and that he is in congestive heart failure. Those days are very hard and emotional.  Last week when I met with the nutritionist she took me on a tour of the ICU where he will be after his surgery. As I walked around the area I was greeted by kind, smiling faces of the nurses 
caring for the babies but as I left it occurred to me that they were smiling at me and fawning over John because they new that he would be there soon. That was a hard reality to deal with. I'm trying to look at pictures of other children who have been through this surgery to prepare myself for a the machines and tubes but I wonder if you can ever really prepare. Besides, it's different when it's your own child and your seeing it in person. 

It is my hope that we can hold off on surgery until the other children are done with school and I have been able to celebrate Bella and Victoria's birthdays in which are May 10th and May 11th. We are also hoping to surprise the kids and take them on a long weekend to one of the Phoenix Condos in Orange Beach. I hate to say that my children have only been to the sandy white beaches of Gulf Shores once and that was right after my dad's death. We really would love to do this before surgery since it will be difficult to do it after. So if the doctor says we can put off the surgery until mid-May then we can do these things with the older children.  Of course, nothing is more important than John Isaac's health so that takes precidence and if the doctor feels it is best to go ahead with the surgery then of course we will do that.  

Thank you for your prayers. We couldn't do this without all of your love and support. 

Wednesday, March 16, 2016

My Baby Has A Broken Heart

Atrioventricular septal defect, or AVSD, is the most common congenital heart defect in children born with Down Syndrome.  It is hard enough wrapping your head, and heart, around the fact that your child has been born with a chromosomal abnormality. But it can be a punch in the gut to think about the fact that your new little baby has a heart condition that will require open heart surgery.

AVSD is also known as complete AV defect. It is where the septal wall between the atrium and the ventrical sides of the heart both have holes in them. This causes the un-oxygenated and oxygenated blood to mix sending the blood back to the lungs more often for more oxygen. This puts a lot of stress on the heart and lungs causing congestive heart failure to begin around one month. The other problem is that rather than having two separate valves, the mitral and tricuspid values, there is just one large valve. Both of these problems will have to be fixed, without the fix our baby will not live.

When we got the diagnosis I had so many questions but the biggest question I had was, "Will my baby die?"  I think that would be a question that any parent would ask if they found out there was a problem with their baby's heart.  The great thing about this being a common heart defect is that the surgery is performed often and it has a 97% success rate that the surgery will correct the problem.  For MOST children it is one surgery and then they are capable of having a life like any other child.  His heart will never REALLY function the way a healthy heart will and he will have to see a cardiologist every year for the rest of his life, but he will be able to play sports if he wants to play.

We have no idea when the surgery will take place but we do know it typically happens by the time the  baby is 6 months old.  So right now our job is to keep him healthy and do everything we can to get him to gain some weight.  Of course I am praying that God will heal his heart, that we will go to his cardiology appointment and the doctor will tell us that a miracle has occurred and his heart will not require surgery.  And call me crazy but I truly believe that God can do it, He could heal him and use the miraculous healing to show people His power.  But, I am also very aware that God may choose not to heal him.  But I do know one thing, God WILL use John Isaac, and the rest of our family, to show the world His goodness, faithfulness, and love.  God is good even when a child is born with an extra chromosome or a heart defect.  God is faithful even when He doesn't choose to show His power by a miraculous healing. And God is loving even when He doesn't answer our prayers the way we want him to.

As I sat in the NICU watching my sweet baby boy lying in an incubator I was praying and asking God to please tell me if our baby would be ok.  I read something that had a scripture with it.  The scripture was Psalm 118:17 and it says, "I will not die but live, and will proclaim what the LORD has done."  I was so encouraged and truly believe that this little boy will live to proclaim the word of the Lord to the nations.  And I can't wait to see what God is going to do through this little boy and the rest of our family.

Monday, February 22, 2016

John Isaac-God's Gracious Gift of Laughter

"Your child has some markers of a genetic abnormality. They are going to send off a test in the morning but it looks like it might be Down Syndrome."

"What? Really? Ok..." is all I could say.

The neonatologist had wheeled our new baby boy out of the delivery room a short time before because he was struggling to keep his O2 saturation up. They wanted to put him in an incubator and get him stabilized. Once I was cleared to leave delivery and be out in a recovery room they would take me to see him before heading to my room.

As they wheeled me into his room in the NICU I was numb, or maybe I was just in survival mode. This was not what we anticipated and even still all of that is a complete blur. The next thing I really remember with clarity is sitting in room 6019 and thinking about how completely unnatural this all felt. I felt empty, as if I had lost my baby. Michael was with me but I felt so alone. I should be nursing. I should be staring from my bed at my newborn son. I should be listening to his squeaks and grunts. But instead he was two floors down being cared for by strangers.

Thirty-two weeks prior to that night we had found out that we were going to have another baby. It was just 2 weeks after the sudden death of my father. We were shocked at the news but it seemed that God had known the perfect time to bring new life into our family. We immediately knew his name would be John, after my dad. And Isaac seemed fitting because it means laughter, and that's exactly what I did when I found out I was pregnant again. His name was decided within the first 24 hours of finding out we were pregnant. If it was a boy his name would be John Isaac-God's gracious gift of laughter. No girls name was ever even discussed.

My pregnancy was textbook except my morning sickness was worse than any other pregnancy, 24 hours a day, 7 days a week until I was 16 weeks pregnant. Other than that it was completely normal. I went for my ultrasound at 18 weeks and we found out it was in fact a boy. The sonographer did all of her anatomy scans and told us that everything looked wonderful. She just kept saying over and over "beautiful, he's just beautiful." No indication that anything was wrong.

We opted not to have a 3d or 4d ultrasound since insurance doesn't cover it and I wasn't overly impressed when I had one with Victoria. We also opted not to have the genetic testing because I wouldn't have made any difference. I have gone back and forth about that decision but honestly I feel like it was best for me. I would have spent the rest of my pregnancy worrying and researching, and I probably wouldn't have been able to enjoy my pregnancy like I did.

The rest of the pregnancy was great. No issues at all. I just enjoyed feeling life growing inside of
me and was really looking forward to meeting our new little man. On January 31st I had contractions
on and off all day. We really thought that John Isaac was going to grace us with his presence in January. But then the contractions spaced out and February 1st came. There were no real contractions
until about 3pm. Then all of a sudden they were strong and getting close together. Michael came home and after a quick call to the hospital we were off. When we got there I was 4 centimeters and in active labor. That was it, we were getting ready to meet our son.

Labor and delivery went exactly the way I wanted it go and before we knew it John Isaac was being put on my chest. Within a few minutes things began to change.  They took him from me because he wasn't getting pink, but everyone kept reassuring me that everything was ok. They started giving him oxygen but after a while they decided that they needed to take him to the NICU to get him stabilized. As they took him out of the room I was confident that everything would be ok. I wasn't worried about him at all, just resolved that they were doing what needed to be done to make sure he was ok. After a little while the OB that delivered John Isaac walked back in and sat down next to the bed.

"Your son has some markers of genetic abnormalities. They are going to be testing him in the morning. In the meantime, he is going to need to stay in the NICU so they can watch him."
Wait...what? After a completely normal pregnancy and a textbook labor and delivery I was not expecting all that would happen over the next few days. 

I ran through all the emotions that night. Fear, anger, sadness, guilt...and then all over again. The emotions overshadowed the joy and excitement of the arrival of our sweet John Isaac. I just wanted to hold and nurse me sweet baby boy. But after running through all the emotions more than once I settled on PEACE. "Be anxious for nothing but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God which surpasses all understanding, will guard your hearts and minds in Christ Jesus."

The peace that surpasses all understanding. It is a peace that can not be explained. A peace that can only come from God.  I wish I could say that I haven't struggled, but I have. I have no idea what the future holds but I can have peace because I know the one who holds the future. It was not my plan to have a son with Down Syndrome, but God knew and He has a plan. His ways are nor our ways and His thoughts are not our thoughts. And God is no less God today than he was three weeks ago when we thought John Isaac would be born completely healthy.

Psalm 139 says "

13 For you formed my inward parts;
you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.[a]
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them."

God doesn't make mistakes. John Isaac was created by God and for God to bring glory to God. He has a plan and a purpose for John Isaac  just like he does everyone else.  I feel blessed to be a part of this little boys life and I look forward to watching what God has in store for him.  Our sweet John Isaac- God's Gracious Gift of Laughter.

Friday, May 23, 2014

Wait for the Lord

     Waiting…it is something that we do everyday.  We wait for water to boil, for red lights, for our children to wake up, or to go to bed, and if you live where I live you wait for trains (oh the trains…well, that is a whole different blog).  Those are the little things, but we also wait for BIG stuff too.  We wait for test results, a letter in the mail, to find out that we're going to have a baby and for the baby to FINALLY arrive.  We wait ALL the time, every day.  You would think that with all the waiting that we do in our life that we would do it better.  You know the saying "practice makes perfect", well we do this all the time so we should be great at it.  Unfortunately though, most of us are not.  Because although we may "wait" I wonder if we are practicing waiting patiently.  There always seems to be something that we are waiting for that pushes us to a limit of frustration and anxiety.
    Waiting tests our patience.  Patience is the character trait that God is trying to work in us all the time.  If we are going to be good at waiting we must practice patience in the waiting.  It's like a muscle and it must be exercised every day in order to get stronger.  I am convinced that if we will see God in the waiting that we will see Him working to grow us in our patience and in our trust of Him and His timing.  I think that waiting can refine us almost as much as suffering can.  If you are waiting for something and you are feeling anything but peace I encourage you to cast your eyes UP.  Look to the Lord and see what HE is doing.  Focus on Him, learn about Him, worship Him.  Flex those spiritual muscles and be encouraged that if you exercise them they WILL get stronger.  And since this is something we will do every day of our lives until we meet Jesus face to face getting better at will make our lives more peace-filled.

Psalm 27:14 "Wait for the Lord; be strong and take heart and wait for the Lord."

Thursday, July 18, 2013

It Could Have Been Me!

In light of the recent tragedy of the death of a little one that was left in a car, I thought I would share a recent story that happened to me.  Although I have never "forgotten" a child in the car, I did have something happen a couple of weeks ago that scared me to death.

We had been out shopping and I had come in the house with all of the children to put away groceries.  After about 10-15 minutes the groceries were put away and I threw a load of laundry in and began thinking about lunch.  I had a brief thought about where Victoria might be playing.  You know the thought "she's been quiet for a while".  I assumed she must be upstairs playing".  A few minutes later there was a brief recollection of hearing the front door open and close several minutes earlier.  I began to count heads and ask if Victoria was upstairs.  She was not.  I panicked!  I ran outside and sure enough there she was in the van, with the door closed, playing with a toy we had left in there when we got home.  I opened the door and she was dripping with sweat.  She was still smiling but obviously very hot.  It scared me to death.  What if I had not had that recollection of the door?  What if I had just assumed she was playing upstairs while I made lunch?  What if?  Oh my goodness.  The thought sickens me.  I could have been "that" woman who leaves her child in a car only to find her unresponsive.

My lesson to add to the others that people have mentioned.  If you have young children lock your doors after you get out of the car so that they can not get back in it to play.

Also, please let us be careful not to judge this poor woman who is suffering enough with her own self-imposed guilt.  She has woken up this morning of the reality of the horror of what has happened.  She will have to live with that horror every day for the rest of her life.  We have no idea what kind of mom she is but I know it could have been me on the news.  You don't have to be a bad mom for something tragic to happen to your child.

Saturday, June 08, 2013

First Full Year in Review

We just finished our first FULL year of homeschooling.  I am currently working on grades right now so we are all very excited that we are officially on summer break.  I thought I would share some pictures and also just a few of my thoughts on homeschooling now that I have done it long enough to have some "likes" and "dislikes".

 On the first day of school I put together little baskets with all of their school supplies in them.  They woke that morning, got ready for school, and then Michael took them to breakfast.  When they "arrived" at school their baskets were out and we spent the morning going over some classroom rules and doing some fun activities.  One thing I will change fore next year is the organization of their supplies and I will buy ALOT more of them.  We go through pencils like crazy.
Our Classrom
The kids baskets

 Many days they will sit together and do their work.  
"Stop copying me!"  (Oh yes, they bicker...they are still siblings.) 

And sometimes they get so goofy...

 That they get split up.  

Luna takes her school very seriously so she needs quiet most days.
And Bear is such a goofball that he needs quiet most days too.
Homeschooling is one the hardest and most rewarding things I have ever done.  It took me a while to get on board (10 years to be exact).  I was petrified at the thought for years because I really believed that I couldn't do it.  We have some really hard days and some great days.  Most days I am exhausted mentally, physically, and emotionally.  But at the end of the day it is worth every minute.  We are learning so much about each other and about ourselves. 

It is not all work around here though.  We have so much time to have fun.  Because the class is so small and they have very individual attention it does not take us near the amount of time to get all of our work done so we have more time to play and explore.  

We have had many opportunities to go on field trips.  We went to American Village at Thanksgiving and Christmas for their historical programs.  They are wonderful and very entertaining.  We go the park and on nature walks at least once a week.  And we even had the opportunity to go to Belize on a mission trip this year with Luna and Bear.  

American Village
 Oak Mountain for nature walks


The children also had time to pursue many of their own interests in their free time.  Luna learned how to make polymer clay figures and sold them at Christmas time to her friends to raise money for her mission trip to Belize.  

She also made cakes and cupcakes for her Aunt Mimi and Tots birthday parties.

Bella learned how to make Polymer Clay figures

Aunt Mimi's beach theme cupcakes 

Tot's Cinderella Princess Birthday Party Theme

Tot's discovered her love for cooking like the rest of them and loves to help me make pancakes for breakfast.  
 We love being together (most days).  It is a joy to be able to watch my children grow up.  I love being able to have so many opportunities to teach them about life and God, as well as teach them their academics.  

My Little Blessings