Tuesday, October 21, 2008

Life Song

This year as we have been studying the human body in homeschool as a part of our Konos Curriculum. I have met some amazing women through the Konos e-loop that are also studying the human body. As we studied the brain last week, our little family had an opportunity to learn together about my daughter Lexie's birth defect, Dandy Walker Malformation. As we explained a little about Lexie's malformation with the women on the e-loop, we also learned (and were inspired) about some amazing moms who have children with other types of brain malformations.

After visiting with them and after teaching Lexie the reason she has shunts and hydrocephalus, it made me reflect on our journey of Lexie's life. You see, when I explained to Lexie that a piece of her brain was missing - the vermis - and what a miracle she was because she is developing normally she said: "I want that piece of my brain to grow back." I explained that she didn't need that piece of her brain and she said: "Yes, but I want to be just like you.". As you can imagine this broke my heart as a mother. I went on to explain more to her about the miracle she is.

After this and the comments I received from some of the moms in the group, I have decided to share my testimony about our journey with our miracle gift of Lexie. I originally wrote this testimony for a speech I was asked to do for the Rachel Center Crisis Pregnancy Center. It was then shared with my family and friends. I now share it here to whoever happens upon it in hopes that it inspires you, or if you are feeling the desperation I felt when I discovered my unborn baby was diagnosed with a malformation where the diagnosis was very grim, that you are encouraged to treasure the life inside you. Every life has a song to sing. (Lexie is now six years old. This was written when she was four.)


Have you ever noticed that some of God’s greatest gifts come in oddly wrapped packages? No one could have told me five years ago that a child that was given no hope of survival could end up being full of the greatest gifts and lessons we have had in our lives.

Almost five years ago, I found myself pregnant "again" when I already had a 10 month old baby and a four year old son. As you might guess, I wasn’t thrilled to be pregnant again so soon. But after some time to get used to the idea of our little family expanding, I began to look forward to loving another baby. Little did I know what lay ahead.

You see, my stomach wasn’t expanding as much as it should have been for a baby of approximately six month’s gestation. Our worst fears were realized in June of that year when we found that our baby daughter had a rare birth defect called Dandy Walker Malformation. A piece of her brain called the vermis was missing and in its place a cyst of water had formed. She had hydrocephalus. The specialist told us that our daughter had the truest form of the malformation and therefore, she would be one of the worst outcomes. He told us that he recommended termination for these types of pregnancies. That we should expect the worst and hope for the best. He told us she may not even live to term or outside the womb. He said to expect her not to walk, talk, see or hear; to expect that she would have no quality of life. That she could have extra fingers and toes, cleft palate, malformation of internal organs and brain disorders like trisonomy 13.

For sure, these things we did know: The baby was not growing like she should be. Her head was much larger than the rest of her body due to the hydrocephalus and as we found out later, because she was starving to death as a result of the placenta and umbilical cord being half the size they should have been. Her heart was a concern too. Two valves were not working properly and her aortic arch was too small. Her kidneys looked small and dense and her hands looked clenched which is a sign of mental retardation.

As you can imagine we were devastated. The doctor had basically told us that I had a monstrosity growing inside me. Even though I didn’t believe in abortion, when he told me about my baby, it made me pause. Should I consider abortion - was it better for this child to die than to live a life full of pain and suffering? Although I was scared to death, did not know if I wanted the baby, I couldn’t bring myself to end her life.

We chose to search out the best medical care for the child we could find. We planned to have her in Portland at Doernbecher Children’s Hospital because they had experience with Dandy Walker babies. I continued my prenatal visits to the specialists in Idaho in the meantime. My baby wasn’t due until September. On such a visit in mid-July, we did the usual samples with the doctor and then walked to a pediatric neurosurgeon’s office for a consultation. There was a message for us when we arrived that I needed to immediately return to the other doctor’s office. When we arrived, we were told that I had pre-eclampsia and that I was at stroke and seizure level. The only cure for this condition was for the baby to be born.

Strangely enough, we had no idea what to do. We hadn’t planned on having the baby in Idaho. She was at least 8 weeks early. We hadn’t made arrangements for our other children. We actually started to drive toward Portland, Oregon before God turned us back around to St. Luke’s in Boise, Idaho. Looking back, God was holding us in his hands - there was a reason I had a doctor’s appointment that day. I would have had no idea I was sick - I felt fine, just a slight headache which I attributed to the stress I was under. I can only imagine what would have happened if I had been alone at home with my other two children.

Our baby daughter was taken emergency c-section at 3:00 a.m. on July 18. She weighed a whopping 2 lbs, 15 oz. To our surprise she came out crying loudly - we had expected she would need to be on a ventilator due to her being so early. She was so very small and weak. Too small to be allowed to wear clothes - too small to know how to nurse - to small to fit into premi diapers. My husband’s fingers were bigger around than her legs. At first I couldn’t bare to name her as it meant hope - and it hurt too much to have hope. But as the days went by and she was still alive we decided to name her. The names we had chosen for her just didn’t seem to fit. We finally settled on Lexie - only to find out later that Lexie means "defender of mankind". God so perfectly named her as one who would defend the right of other children to live.
Lexie was fed by IV’s and tubes for the first few weeks and slowly grew a bit bigger and stronger. We taught her how to nurse and she steadily improved. Her heart issues resolved, one with a medication to close the valve and the other issues miraculously resolved themselves. Along with her growth, her head grew too. We held our breath every day to see how much her head had grown, trying to decide if she would need surgery to place a shunt in her brain to drain the fluid. Lexie steadily improved and we were able to take her home 4 weeks later, although her hydrocephalus hadn’t resolved.

At home, Lexie started to scream for hours at a time after each feeding. We were told by a doctor that we were just dealt a bad hand and there was nothing we could do. Out of desperation we researched for information to help relieve the pain. It was later confirmed that Lexie had silent reflux - a very common issue in premies where the muscle between the esophagus and the stomach is not strong enough so that it allows food and acid to come back up into the esophagus causing extreme pain. Lexie’s reflux seemed to slowly improve over the next month but her hydrocephalus did not. At two months old and 7 lbs, Lexie had her first brain surgery to place a shunt to drain the fluid around her brain. What was supposed to be a 2-3 day hospital stay for us, turned into over a month and 3 brain surgeries and numerous tests later.
During this time, Lexie’s system reacted badly to the multiple surgeries. She went through many tests as the doctors were trying to determine what was going wrong. She was in the ICU many times in severe pain which we later determined was due to morphine not working for her - she went through 3 brain surgeries without pain medication. It was so heart wrenching to watch such a small baby go through so much and not be able to do anything about it. At one point, Lexie was having difficulty breathing and keeping her oxygen levels up. Pat and I were trying to make the difficult decision of whether we would put her on a ventilator or not if it came to that. She had been through so much and was in so much pain. You could not even touch her without her screaming. Would it be better to just let her go?

As I was crying out to God one night in the ICU, asking him to take Lexie if she was not going to get better, I was so tired of seeing her suffer, a four year old girl was put into the adjoining room. This had been a perfectly normal little girl who had a growth in her esophagus that no one knew about. Her parents found her lifeless in their home as the growth had cut her supply of air off. We listened for 24 hours as this family grieved over their daughter as they decided to shut off the machines that were keeping her body alive. The image I still have in my heart to this day is of the father, too grief stricken to walk, holding his lifeless baby girl, as he was being wheeled out in a wheelchair to take her home to bury. God sent this message across my heart and mind "This is what you are asking for - are you sure this is what you want". Of course it wasn’t what I wanted.

After her surgeries, Lexie was so weak that it was hard for her to nurse. After a difficult placement of a tube in her stomach to feed her, we were sent home where she began throwing up everything that was put into her. Eventually we made the decision to remove the tube as Lexie was not gaining weight with it. What was most difficult is that when the tube was placed it caused Lexie to refuse any food by mouth. When the tube was removed we had to force feed Lexie everything. We fed her 10 ccs an hour, every hour of the day and night. Sometimes we could get Lexie to eat when she was asleep, sometimes when she was distracted with a toy, but most of the time it had to be squeezed into her mouth. Most feedings took over an hour and then she would throw it back up. The stress of trying to keep our "failure to thrive" baby alive was immense and with severe sleep deprivation for both of us. We eventually discovered that one of the reasons Lexie refused to eat was because she was being under dosed with her medication for acid reflux. Unfortunately, the damage had already been done. As we found out, refusal to eat is a common reaction for severe acid reflux children. Lexie learned that food meant pain. She was so fearful that her entire body would shake when we even tried to brush her teeth. Lexie is just now learning to lick an ice cream cone, drink on her own and learning to chew small amounts of food.

It has been four years of parent directed feedings with very slow progress. Because Lexie had thrown up so much a cold would put her in the hospital with dehydration. The 24 hour stomach flu would last her 10 days. We spent the first three years of her life in extreme isolation. Our children couldn’t go anywhere - not even to the store for fear that a bug would be brought home to Lexie. Pat and I only were outside the home to work, other than that, no church, no outside contacts. It felt like the life we knew had literally ended and what was left seemed so bleak.

I tell you about our experience, not for you to feel sad for Lexie or sorry for us, but to share the amazing gifts and blessings we have received from our Lexie Kay. God’s Word in John 9:1-3 says "As (Jesus) went along, he saw a man blind from birth. His disciples asked him "Rabbi, who sinned, this man or his parents, that he was born blind?" Neither this man nor his parents sinned, said Jesus, but this happened so that the work of God might be displayed in his life." We see the work of God displayed in Lexie’s life daily.

We are so very blessed to say that although Lexie’s road has been difficult, she is developing normally. She has had 6 brain surgeries for replacement of shunts, with more surgeries to come in the future. But to look at her, you would never know anything was wrong. She is meeting all her mile stones and is a very precocious child, refusing to let her siblings learn something without her. She is truly a miracle - the little baby that was supposed to be the worst outcome has turned out to be the best outcome.

As for our family, we have learned so much and received so many gifts. We’ve learned that if you can hold on, and walk through the fire, God will always bless you with great gifts if you choose to look for them. I remember thinking in the darkest moments - why can’t I feel or see you God, aren’t you supposed to be here now when I’m at my lowest point? What I couldn’t see then was God was in the process of giving me a wonderful gift. What I haven’t told you is that, before Lexie was born, I had been praying for increased faith. God taught me in this process that it wouldn’t have been faith if I could see him.

Hebrews 11:1 states "Now faith is being sure of what we hope fore and certain of what we do not see." In 1 Peter 1:6 & 7, God’s Word spoke to me: "Though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith – of greater worth than gold, which perishes even though refined by fire – may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed."

Now, when I look back, I can see that God was there in so many different ways. He was there with the family, who had a critical child of their own in the ICU, who adopted Pat and I because we were alone. Their child was also in a life and death situation and they were at our baby’s bed praying for our baby. He was there with our friends from California unexpectedly flew up to be there when Lexie was born. God was there with the group of people from different churches who came to our house to anoint Lexie and pray for healing for her. God was there in friends like Kelly Wright who donated breast milk for over a year because Lexie was allergic to everything else and I couldn’t produce enough. God was there in Cathy and Dave Johnson who loved and cared for our children when we lived in the hospital. God was there with Debbie Hoopes who gifted us with brownies every Monday. God was there in the many friends who prayed for family. ........................ And, yes, God was there with the creation of coffee!!!!!

God has given us the gifts not only of increased faith, but of increased compassion. He has shown us a glimpse of what sacrificial love is about. He has taught us how much we all need His grace. And, he has taught us to appreciate every minute, every hour, every day. Each new thing that Lexie can do is an amazing miracle. None of us are promised tomorrow, and we don’t know how long we will be blessed to have Lexie with us. But I can tell you this, her life has a tremendous purpose. Every life, not matter how short or how long, is a gift and has a great purpose.  

I wanted to share with you the words spoken by Father Camie at the funeral of our dear friends, Matt and Elsa Cunningham’s, baby boy:

"Of all birds, sparrows are probably the most insignificant. They are small in size and dull in color. They undertake no great flights. They live in bushes rather than trees. Though they are found in vast numbers the world over, we take them completely for granted. They so blend in with the earth that we hardly notice them.

When God wanted to show us how far-reaching and all embracing is the knowledge and care of God, he spoke about the birds. However, he didn’t talk about swans or eagles, but about the humble sparrows. He said, are not 2 sparrows sold for a penny? Yet not one of them will fall to the ground without your Father knowing.

By this, he means that everything that happens to any of his creatures, even the least and most insignificant, is seen by God and is important to him. - Yes, even the fall of a single sparrow. The fact that he doesn’t prevent this fall, doesn’t mean that he is indifferent to it. God is never indifferent.

So do not be afraid, you are more valuable than many sparrows. If God is concerned about the sparrows, we can be sure that he is even more concerned about us, who are his daughters and sons.

Sometimes in spring you will come across an apple blossom lying on the ground, having been brought down by a shower of hail or gust of wind. You are tempted to say: "What a pity it died so soon. It would have made a splendid apple."

To speak like that is to imply that the whole worth of that blossom lies in the future, a future from which it has been cut off. But this is not true. The point is that the blossom has lived, even if only for a short while. And it has accomplished something. During its brief life, its perfume sweetened the air, and its beauty brightened the earth. Moreover, its existence signaled the arrival of spring. That is no small achievement. What it would have become is not the point. The point is that it was perfect as a blossom. What more could anyone ask."

Lexie’s favorite song is very fitting for her. It is called "Life Song" by Casting Crowns. And, its truly the message I would like to leave you with: Every Life Was Created for a Purpose.......... Every Life Has a Song to Sing.

(You can watch the video now!)

The Flanagans

Here is a little video of Lexie at 4 years old singing her "Life Song". She's a little shy and quiet at the beginning, but keep watching, she cuts loose at the end! Update: Lexie is now six years old and has been eating on her own for a year. We pinch ourselves daily - what a blessing!

Friday, October 17, 2008

A Very Sweet Quilt Giveaway!!!

Elizabeth at Pigtails and Snails is having her very first quilt giveaway. And what a quilt it is. You must go enter today (the last day) by leaving a comment before 7:00 pm (MST). I love this pattern which is her own exclusive pattern. It is so comfy and sweet looking....just right to snuggle up with Byron, Lucy, Emma and little Ayden to read stories this winter. Oh and I guess I could snuggle Dave too.

Tuesday, October 14, 2008

The Nervous System - Neurons

We've been studying the nervous system this week as part of our study of cooperation and the human body. We've made the brain out of playdough, learned what each part of the brain is responsible for and even learned about Lexie's shunts and why she has them. It's been a very educational week! What better way to remember the neuron cell and how it sends messages than acting it out:

Friday, October 10, 2008

First Snow in 2008

It's hard to believe, but we had our first snow fall today on October 10!!! Here are the kids enjoying it!

Tuesday, October 7, 2008

The Human Cell

I can't believe it's been over a week since I've posted - school is keeping us very busy!!!! Here is our next lesson for you on the human cell. One thing I love about Konos is it makes very complicated things easy to understand for the kiddos - and the mom too! To understand the parts of the cell and their functions, the kiddos chose household items to represent what the parts do. This video shows you what the kiddos chose to represent each cell part and why. Get ready to expand your brain!