This Wild Ride.

There used to be a ride at Disneyland called Mr. Toads Wild Ride, it was based on the books and then the Disney movie that came after. As rides go, it was one of my least favorite as a child. It was bumpy and took many sharp turns, which threw you around the little car you were in, especially if you were on the smaller side. Around many of these turns things would pop up or jump out and make noise to make you jump and your blood pump extra hard in your chest. I would always feel my heart beating hard after that ride and never wanted to get on it again, of course everytime we went to Disneyland I somehow forgot or thought it would be better or maybe I was braver then before, so I would board the little car and take the ride again. This ride we have been on for the last almost three weeks feels a lot like Mr. Toads Wild Ride. My heart is beating hard and fast, my blood is pumping and there are sharp hard turns and scary things jumping out at us and yet this ride doesn't have an end for quite some time if ever. I am buckled in and white knuckling my way through, knowing after this morning we are in for the long haul.

Our sweet daughter Koralyn was born just like our two older sons. Delivered by an uncomplicated routine c-section. On April 9th 2012 at 11:44am. She weighed 6 pounds 11 ounces and was 18.5 inches long. She came out blue and crying much like our boys. And I was excited and thankful when I heard her cry and got to see her sweet face. Of course after she was out and cleaned things were nothing like they were with Asa and Asher. Daddy got to hold her for a few minutes as did I (as much as you can hold a baby when they are sewing you back together with a big paper sheet across your front). The the "team" told us it was time for them to take her, they put her in a little plastic box and wheeled her out of the room as Daddy followed close behind. I of course fell asleep as they continued to work on me and woke up in the recovery room, without my precious baby, knowing she was across the bridge being looked at and worked over by many doctors and nurses who had also been waiting for her arrival for months now. The next few days are a blur of being in my hospital room at the end of the hall at Harris and being wheeled through the tunnel to Cook Childrens to see my sweet daughter in her plastic box. We were told on Monday evening that she would have her first open heart surgery on Wednesday instead of Thursday.So on Tuesday the boys, my mom, and Amos's parents came to see Koralyn and wish her well on her journey. It was a surreal feeling wacthing my two strong boys look at their little sister through thick plastic. Asher seemed scared while Asa seemed unphased by it all and just excited to be here in this new place seeing his long awaited baby. Getting back to my room I welcomed my pain meds and hoped they would bring sleep, so I could escape the reality and gravity of what was coming in the morning.

Early Wednesday morning I was once again wheeled from my room over to Cook Childrens so we could say our goodbyes and prayers and watch our daughter being wheeled into the OR praying she would be wheeled out again alive and well. Dr. Tam her surgeon came out to talk to us and again explain what was going to take place and what the risks might be, while the nurses and techs were doing her two hour prep work getting her sedated and on bypass. Dr. Tam, being a kind man, but still a brillant heart surgeon at one point told us no matter how well he explains it we really have no idea what is actually taking place, we just wouldn't be able to wrap our minds around it unless we were in there watching, which of course is out of the question and would not be a welcome invitation even if given. We were told to go back to my room and wait for hourly calls and then our call to come back over to see her and hear the news of her surgery before she would be wheeled into picu. Luckily our gracious pastor Daniel Sweet and Cyndi King came to help us pass the hours talking about things outside of the hospital walls, even life as far away as India and Africa. It was a welcome and good distraction but every once in awhile I would think to myself how strange it was we were just sitting in my hospital room talking of such simple things while my baby was on bypass being cut open and worked on and stiched back together. Every time the phone rang, my heart jumped in fear of answering but with hope that the update would be a good one. Each time thankfully the update was indeed good, until hours later the call came to head back on over she would be wheeled out shortly after Dr. Tam came to speak with us about what had occured. Amos and I along with Daniel and Cyndi sat in the small cardiac waiting room awaiting the doctor. This was the same waiting room we had sat in twice before while I was still pregnant awaiting her fetal echos. Every person that passed by the window made my heart jump until finally Dr. Tam opened the door with a smile on his face and informed us the surgery had gone quite well and took less time then planned and our little girl was doing very good! I have never heard such sweeter words in all my life and we now happily waiting for Koralyn to be wheeled by. When she was It was a happy time and I was able to kiss her sweet swollen face and tell her how proud of her we were. The team transporting her to the picu all proudly mentioned how well she did and was doing and how she was in the top 1% that did awesome! All wonderful words so welcomed by two scared parents. We knew God had answered our prayers and been so gracious to make this first step a successful one.

The next 24 hours went very well, again we heard she was doing excellent and the doctors and nurses were so happy with her progress and just how stable she was staying. I thought myself, maybe we would be the parents of the miracle Hypoplast baby that did insanely well and had no issues or problems! Then Thursday evening sitting alone in my hospital bed while Amos was down getting some dinner my cell phone rang and I recognized the number as Cook Childrens. My heart went into my throat as I answered and heard the nurse say my baby had just had a pulmonary crisis, at the end of explaining I asked just how bad the situation was and the nurse answered that if it had lasted any longer she would be calling us over to say our goodbyes. I hung up and made my way out of my bed and into the bathroom to ready myself for my ride across the bridge as soon as Amos got back. He walked in carrying his pizza and cookie to me sobbing by the door trying to put my slippers on and telling him their was a problem. I have never had such a quick wheelchair ride in all my life!! We got to her bedside along with the many nurses and doctors with concerned looks upon their faces and gentle words of explanation. I didn't completely lose it until I saw our Pastor standing by the picu door, then once again I just started bawling! At this point we weren't sure if she was going to make it much longer and I was just dumbfounded and at a loss for how to breath or cope or live in this moment. I told Daniel and Amos and anyone else standing near that I didn't know how to do this, how am I supposed to do this, I knew in that moment that God has a plan and knew about this, giving us our sweet Koralyn for a reason but said I didn't feel up to the burden or the challenge of this new road we were on. How was I supposed to love this baby that might very well be dying at this very moment. After Daniel told me my only job was to love her, just love her, the nurses told me sweetly that I should go back to my room to get some rest and take care of myself and take my meds. In other words crazy lady, you look like hell go lay down!! That night Amos stayed in the picu with our sweet baby and gave me frequent updates as I laid in my bed pleading with God to help us, help us, that is the simple prayer I repeated all night long, everytime I woke up and cried and was scared I just asked for help, for all of us in our little family, that is all I could muster. Koralyn had a few more smaller episodes but by morning seemed more stable.

The next 10 days were spent in the picu with a few more highs and lows. After celebrating her vent being taken out, she went into SVT minutes later and stayed that way pretty much throughout that day, resisting strong meds and even pacing wires until finally she leveled out that evening after they brought the big guns of SVT meds out! We were so thankful after that day, that she became more stable and had several good days and nights in a row with just very minor issues. We happily "graduated" to the nicu on Monday night April 23rd, the same day Amos had his first day back at work! We were sent off down the hall by all the sweet picu nurses and doctors with congrats, and good lucks, and she has done so well despite her setbacks!! Since moving to the nicu she has continued to drop her oxygen saturation levels and has had to go back on oxygen. I was finally told this morning by Dr. Levy that they think this is due to a narrowing in the bottom of her shunt that was created during her first surgery.This is good and bad news, of course we would rather have no complications, but thankfully this is one they have seen before so it makes it "common." Also thankfully it can be repaired if need be, but not so great is the news that this repair can only be done by opening her back up since its on the bottom instead of the top of her shunt. Of course this would be a huge setback and that is the last thing we want for her. For now the plan is to watch and wait, if she can adjust to this and keep her sats up better on her own that will be great. Our goals are to slowly wean her off the oxygen she is on and eventually start feeding her from a bottle instead of the tube that is in her nose.If all of this happens we will see where we are at in three weeks and go from there. If she continues to drop her sats or gets worse or goes into crisis we will be doing a heart cath and probably be headed back to to OR opening her back up again. BUT, we will pray against this and hope and expect her situation to get better without more surgery at least until it is time for her 2nd. Unfortunately this means we are here for the long haul, which could mean weeks in the least and months or even until her 2nd surgery.

This ride is wild for sure, I have many emotions throughout each day. I am thankful for so many things, sad about several things, hopeful for many things. I miss my boys, my life, my house, my husband, but at the same time I am so thankful to be here with her, thankful for all the love, help, support, and prayers we have and continue to receive. I am most of all thankful in the knowledge that God made Koralyn and me and Amos and all the people who love us for this very time in our lives, he has a plan, he has a purpose he is good. On the hardest days this is what I hold onto, what I stand firm in, what gives me hope. I pray for many years with my sweet baby girl, that we will one day walk out of here back into the world not having to ever come back for more surgeries. That day is far off many years maybe, but I keep reminding myself this is a season in our lives, we can do it, we can do it. Just keep breathing and praying and hoping, we can do this. "So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Isaiah 41:10

If you could know.

How Many times have you been asked the question, if you could know the day you are going to die, would you choose to know? What would your answer be? I think most people, like me, would say heck no, of course I don't want to know. How differently would you live your life today, or tomorrow or next week, if you did know? How would you prepare? I think our lives, if we are doing it right, are just a series of little deaths to ourselves. Call it death or just change, but it is constantly occurring. When we grow up and move out, we give up the child within and become an adult, in a sense dying to our old self and becoming new. When we choose to get married, we give up or die to our singleness and become a couple. As Christians when we choose Jesus we die to our old self and are raised anew to walk with him, this scenario goes on and on in each of our lives.

I have been thinking about this scenario more and more as each day passes and we get closer to April 9th 2012. I stand by my answer of not wanting to know the day I will die even more then I did before. You see, in a way I feel like the birth of our daughter is going to be the death of me, of our life as we know it, of so much that we are used to. In a way this is a good thing, and in a way this is terrifying and sad.

If you think about it, every time a child is born into a family a little bit of the parent dies and as said, this is a good thing. If you didn't die to yourself there is no way you would get up during all hours of the night to feed this screaming sometimes stinky (but always precious) baby. You have to die to your utter selfishness to be a parent, for some this is easier then for others. Some of us go kicking and screaming all the way. As Christians, we are called daily to die to ourselves and take up the cross to follow our Jesus. I can attest that with each child, I have had to die a little more to myself to lovingly and patiently take care of my children. Mothering, real mothering is hard, gut wrenching at times. Until you are a mother you don't realize how incredibly self centered you are. There is nothing like a child to hold up a mirror and help you see yourself for who you really are, with all your inner blemishes and faults. As the saying goes, I was a good mother until I had children!! This might sound horrible to childless people, (which sometimes it is) but it can be beautiful, it can move you to be more, to be better, to try harder, to seek grace and goodness.

So as a christian, when I think about the upcoming death of my life as I know it, I think about what God is going to do, what he is going to show us, how he is going to change us for the better. When I think of these things, I am willing to die; but, then there is that ever human, ever self seeking part of me that is scared and angry and fighting against this change. As each day passes the panic wells up a little more, the fight rages on, the worries come.

I have read that the "interstage" period of Koralyns process is the hardest, scariest time for the families if HLHS kids. This is the time between the first and second surgeries, once we go home we will need to be extremely careful about germs and sickness. One infection, especially anything respiratory could kill our sweet Koralyn. This means drastically changing the way we live our lives now. No more church nursery, no more play dates or lunches out with friends, no more trips to target or Chuck E Cheese or the park or the mall play area. In other words no more distractions for Mommy or her kids. We love to get out of the house and spend time with our friends, it helps make the long days of toddlers a little more bearable, a little less dragging. We love adventures, traveling, exploring new things and new places. Once we bring Koralyn home, that will all have to stop for several months.

This time is going to be very hard on our entire family. Asa wakes up every morning and one of his first questions is where we are going and what we are doing and who we are going to see. He loves to get out and meet friends and have adventures. I fear these months will be the longest of my mothering life. Any mom knows after just a few days stuck in the house with preschoolers and toddlers, everyone starts going insane, most of all mommy! I fear the loneliness, pain, drudgery, isolation. I am having to tell myself that my strength will come, even if the days are long and hard and lonely, my strength will come, I am not alone. And when we all come out on the other side, we will all be stronger and closer and more aware of our blessings (and maybe not so dependent on outside entertainment and our car)! I wonder already what I will learn about myself, about my husband, about my kids. How much closer will I become to my savior. Without all of the fun outside distractions this world offers me and my children each day, I realize my strength, my patience, and my love will need to come from him; because as it is, even today with all the distractions in place, I can always use more patience and love.

So here we are just weeks away from what is going to be the most stretching time in our lives thus far. Here I am going to Wal-Mart buying massive amounts of toilet paper, baby wipes, and frozen corn dogs trying to prepare my home and cabinets for people other then me being here to love and take care of my boys. This is my control freakish ways coming out full force. Every time I go to Wal-Mart I fill a cart and empty a wallet and get some pretty strange looks along the way. People must think I am just nesting, but I feel like I am trying to prepare for baby Y2K. I realize that no matter how many frozen corn dogs and waffles I have, I really can't prepare for what is coming, can we ever? Isn't that the point, we aren't supposed to rely only on ourselves and our local Wal-Mart for comfort and preparation. (Its not working only making us poor, and last night some old lady ran over my ankles and my cart was so full that several bags fell out on the way to the car) Here I am weighing what is to come, challenged, scared, sometimes doubting always hoping trying always to trust and lean on what I know to be true.

"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 through Christ Jesus." Phillipians 4:6-7

The Plans We Make.

I am a planner, I thrive on schedules and plans and lists. I have a daily cleaning list, shopping lists, to do lists. I love organization and calm (which is funny since I have boys who are anything but calm). I haven't ignored the fact that it is a blessing to me to know there is a problem with Koralyn before she is born, so the doctors and our family can make plans. I have read accounts of families with children with heart defects or Down Syndrome that didn't know until they were born and I can't imagine the shock and pain and all the frantic planning that has to take place. I am thankful for this blessing of being able to plan (as much as possible) for what is to come.

At the same time, I admit that lately this planning is making me a nervous wreck. I have found myself jealous of all these HLHS families where the baby is their first or only child. I think how much easier this would all be if Koralyn was our first not our third child. See most of the planning I am doing is for and because of the boys. I want them to be as comfortable and content as possible, to feel normal and stay on schedule and not feel worried or scared. The type A anal retentive part of me worries about their eating and sleeping and TV watching schedule. Like most moms I think no one can do this better then me, no one knows them better then me, their wants, needs, quirks, capacity to sit in front of the TV all day long and eat only oreos if someone lets them. I find myself thinking about how those one baby families have it so much easier then us and our boys. Oh to only have to focus on your sick child and not worry about others who need you at home. To be able to say, nothing is more important then my time here in this hospital with this sick baby. I even got a bit angry while watching the Duggars and what they went through with their 19th child, because they have all those built in helpers and could go to the hospital without guilt knowing all their littles were being taken care of. I know this is a bad attitude to have and is in no way helping me or my family, but honesty is the best policy right?

I thought I was doing pretty well until a few days ago, when the stress of whats coming just really started to become more real. Even with a "normal" baby and delivery you plan and nest and stock up on things; so now I feel like I need to do all that to an even bigger and more crazy extent. I find myself thinking about first aid kits and light bulbs and pedialyte, like I am preparing for some kind of baby Apocalypse where whoever is taking care of the boys will need these things, and suddenly no stores will be open and I will be deemed an unfit mother for not having a fully stocked first aid kit or a light bulb for that burned out night light. Because in my twisted Type A mind, every good and faithful mother is always prepared and has these things for her children. Like suddenly Martha Stewart or Mary Poppins is going to come into my home and nix nix my flaws of planning and organization. We all have our quirks right? So humor me. I realize when the time comes, the light bulbs and Tylenol will be the least of my worries. I realize that God knows what we need and will send people to help and love the boys while we are away.

I also realize that while being Type A can often times be a wonderful life skill, I can take it way too far and lose sight of what is really important.God is teaching me so much about myself and my insane need for control and it is frightening and humbling realizing that no amount of planning and doing is going to really prepare us for the roller coaster we are about to board. Again I am faced with the fact that my control is just an illusion in the first place and can be such a weight if I let it. If motherhood has taught me anything thus far, its that the flexible mother who can change her schedule and plans at a moments notice is a happier mother and her children are a lot happier too! Remember Mommy Dearest? (If you don't, you should YouTube the wire hanger scene, yikes)!! It is funny that Koralyn seems determined to remind me to be flexible even before she is born, oh we might be in for trouble with this one!

The truth is I rely so much on myself, my ability to be a good mom, a good wife, an organized and clean individual, all skills that are very lacking on a day to day basis of course. I think as christians who profess to rely on God we all have to come to a point, or maybe several, where God makes us realize we are flawed and failing and we need to rely on him fully and completely. Because I am such a stubborn girl, God is having to teach me this many times in my life. Any young mother will tell you, you often need to do this several times a day when trying to raise toddlers. It is a hard, and often thankless job that really brings all your flaws to the surface and can ruin your best made plans and intentions. As with anything hard though, the peaks are beautiful and momentous and well worth the climb.

What we will go through with Koralyn might be our Mt. Everest. We have many more weeks of waiting and wondering and planning and I think God made it this way to bless us and also to stretch us. In the meantime, I will try and focus on the sweetness of what is, not on the fear of what is to come. Smiles from the boys, bedtimes with stories and sweet smelling just washed babies. Waking up in our home having freedom to play and plan the day as we wish. Making dinner and sitting down as a family to enjoy it. Even the messes and chores and responsibilities seem sweeter knowing there is coming a time when I won't be able to take part in them. I am repeating these verses often lately to remind me whats important and to know we are taken care of.

"Many are the plans in a mans heart, but it is the Lord's purpose that prevails." Proverbs 19:21

"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important then clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable then they? Who of you by worrying can add a single hour to his life?" Matthew 6:25-27

"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:33-34

My Necklace

Back in December 2010, we were robbed during the day while I had the boys out running errands and meeting with a friend for lunch. Most of my jewelry was stolen, except for a few items that were not in my jewelry box at the time, or that the thief carelessly tossed around the closet in his scramble to make it out quickly. While he got away with my grandmother's wedding band, I later found her engagement ring in a shoe, and I am so thankful to still have this treasured ring my grandmother literally wore thin even 20 years after my grandpa passed away until recently when her fingers became too thin to hold the rings. But I am already getting sidetracked, this post is about my necklace.

For my 24th birthday, while I was pregnant with Asa, Amos gave me a sweet little heart shaped necklace. We were vacationing in San Francisco and on the morning of my birthday, he left the necklace on the bathroom sink for me to find while I was getting ready for the day. I have always loved heart shaped jewelry and this necklace was special because it had a little diamond and my birthstone, an emerald placed side by side on the left side of the heart.

A few months into this pregnancy, I looked down one day and realized I had been wearing this necklace since the time I learned I was pregnant and it was in that moment I realized that it had my birthstone and the baby's birthstone on it as well. I thought this was really neat and pointed it out to Amos. When I learned later that our sweet baby was a girl, I thought me wearing the necklace was even neater, like a little sign, considering this would be my first girl and we were already connected in this sweet simple way. I vowed to not take the necklace off for the remainder of my pregnancy.

It wasn't until a few days ago, that while looking down at the necklace I realized the bittersweet connection of it all. I took the heart between my fingers and slowly traced over it, thinking about the heart and the two birthstones side by side and our connection.

I was born with a broken heart, an atrial septal defect that wasn't discovered until I was three, at which time I weighed 23 pounds. Our sweet Koralyn will also be born with a broken heart, and what seems so ironic in this whole connection thing we have going on, is the fact that the defect that made me so small and sick is essentially what is keeping Koralyn alive right now and will be made to stay open after her birth until her first surgical procedure. In March we will go back in for another echo on Koralyn's heart, and if the hole is closing prematurely, which can sometimes happen in babies with HLHS; there is chance we might have to fly to Boston to have a fetal surgery done to keep the hole open. We are told right now this is a small chance and we are of course praying that our first trip to Boston as a couple will not be under these circumstances. The necklace rests gently right at the top of my scar from the ASD closure. I find myself constantly tracing the heart with my fingers, looking down at the little green and white stones when I am thinking about, or praying for our sweet daughter with her badly broken heart. It brings me comfort knowing we are so connected in so many ways. I feel this necklace is a sweet and comforting reminder of our connection and the hope I hold in my heart for her. No matter what happens, we will always be connected. The two of us side by side like the birthstones on the heart on my necklace, that sits gently on the scar that mended my broken heart, the same scar Koralyn will have. Who knows, one day Koralyn might wear this necklace while away at college or on her wedding day, or while pregnant with her own child. Maybe she will gently grasp the heart, tracing it with her fingers and know how much I have loved her since the very beginning.

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13-14

Thoughts

As the dust settles from the latest news I find myself trying to collect my thoughts and emotions enough to write something that makes sense. On Tuesday we were given the news that our sweet Koralyn actually has Hypoplastic Left Heart Syndrome, a much more severe defect then the original AV Canal diagnosis.

I went in on Tuesday Morning nervous yet excited that the day had finally come to see a more experienced doctor. I had hopes deep down that she would waltz in look at the baby and say something like, oh that first doc was mistaken, the problem is small and can be fixed in a jiffy yay for you! Now go home and enjoy your pregnancy! It was a shocking blow to find out that the news was in fact worse not better. The fetal echo took a long time that morning and the tech pressed down on my belly so much, for so long and sometimes hard that it is still sore today. I watched the screen and the baby and also the techs face for clues. Several times she seemed to sigh and grimace and I got worried. She like all the others, was having an extra hard time getting the images she wanted. She finally finished and told us the doctor would review the images and be in to talk with us.

About ten minutes went by and Dr. Roten came in, I had looked at her picture on the Internet so I knew what she would look like and had also heard from another CHD (congenital heart defect) mom that she was very kind. She was indeed very kind. She started out by asking about our previous diagnosis and then told us that the baby in fact had HLHS. The first question out of my mouth was, okay is that worse or better? She sighed and said, well it depends on who you ask. Some parents think it is better because the risk that she has a chromosomal defect is almost non existent but the defect itself is much more rare and more severe. I blurted out that I would take the old defect and a "special" baby over this! She then went on to explain the logistics of it and what we could expect after Koralyns birth. Let me tell you, the picture is not a pretty one, very murky and dark with many unknowns waiting for us.

After the appointment I felt as I did a month ago, shocked and not sure how to feel. I knew this was not what we were wanting to hear, not what we had been praying for, but again I KNOW God knows and made our sweet Koralyn. The pain seemed to come on much quicker this time and I woke up on Wednesday morning sick and overwhelmed. I can honestly tell you that the last two days have been some of the hardest in my life. The fears are raging at my door and the peace and calm have gone for now, I am sure part of this is due to the fact that I am sick physically, which always complicates even the best day not to mention some of the worst!

I am thankful for a husband who reminded me on the way to the car on Tuesday that we need to remember all hope is not lost, God has a plan and he will get us through whatever is coming. I love this man, and know he is right, but you see I am a worrier, always have been. So right now the only prayer I can muster is one of fear, telling God how scared and overwhelmed I am, asking him what is to come, how have our lives changed what will happen to us, our boys, our finances. I know he hears me, I know he knows me, I know he doesn't mind giving me this time to fear and grieve and be irrational. I also know the haze has to pass and I have to find my trust and peace in him if I am going to make it through all these unknowns; months of waiting and wondering, months (hopefully) of juggling hospital and home and kids. I say hopefully because there is a chance our sweet Koralyn won't make it, this is utterly terrifying to me, and I will be so greatful in the midst of the chaos to juggle instead of plan a funeral with a tiny casket and little pink flowers.

Is any of this making sense? Probably not, thats okay my mind is jumbled and I needed to be honest and tell you all the ugly truth of it. Some random thoughts that have gone through my mind:

Seeing other pregnant moms is hard for just a moment the pain hits me in the gut and I wonder about their sweet babies. Seeing people that don't know, like the lady in the elevator yesterday who smiled and said, "two boys and another on the way" and I smiled and said, "yes and it is a girl" like everything is normal and fine, knowing it is not. Vacations, now this may sound funny and a bit insane under the circumstances but I am being real here folks. You see I love to travel, our family vacations are a highlight in my year, I love to plan them and I love even more so to take them. I have had many thoughts in the past two days about our freedom to go anywhere and do anything and eventually take our boys on a mission trip. Our long car rides across America, our stays in tiny hole in the wall towns, the mountains, the hikes, the adventures. I feel this is being taken from me, from us. There will still be vacations of course and we can still do missions just on American soil, but I feel our "freedom" has been limited and it hurts and it sucks. Our finances and the mounting cost of what is and what is to come. Life while we are in the hospital, our boys, our home, our responsibilities. What happens if one of the boys gets sick, or breaks something. What happens if our cars break down and we need to be at the hospital or our roof leaks or there is a storm or our pool equipment breaks or our fridge stops working or someone doesn't know that I am an insane neat freak and puts the boys clothes away wrong!! Silly I know, but what can I say, I told you I worried a lot. So again when these things come to mind I ask and tell God and take comfort in the fact he knows and cares. And you see he is already teaching me and reminding me that all my "control" is just an illusion and if I am going to rest it will have to be in him.

"We are afflicted in every way, but not crushed, perplexed but not despairing; persecuted, but not forsaken; struck down, but not destroyed."
2 Corinthians 4: 8-9

A Scar And A Picture

I have a scar going down the center of my chest and two smaller scars underneath. When I was little, it was called my zipper and my buttons. I was proud to show it off whenever given the chance! I always knew that my "zipper" was from the heart surgeon cutting my chest open to get to my heart, but never really knew why my "buttons" were there. The other day while reading a blog post about a little guy with a badly broken heart, and looking at pictures of him shortly after his surgery, I realized why my "buttons" were there. It was eye opening to come to this conclusion and now I see my "buttons" in a whole new light.
The little boy, barely a toddler had tubes and wires all over his tiny bloated body. There were two large drainage tubes coming out right underneath the center of his chest to drain his body of excess fluid after the surgery. Looking at these pictures and thinking about what my parents went through was hard. Even still looking at these pictures and catching a glimpse of what our future, what Koralyn's future might hold, was even harder. Thinking about watching your sweet baby girl go through something like this is heart wrenching.
I have always wished my parents kept some kind of journal or memory book of my open heart surgery experience, but it was a different time and place when I had my procedure done. I wish now more then ever I could get a glimpse of what it was like for them, for my sister, and for me as a three year old little girl to go through that whole process. I have virtually no memories of the suffering and physical pain of the ordeal. Only scant memories of the hospital, walking down the hallways during my recovery, the helicopters landing outside a window as my mom and I watched. Now whether these memories are real or something created in my mind after the accounts I have heard, who knows! The mind is a mysterious thing isn't it. I remember years after going to see Dr. Fripp my surgeon in the big building in downtown Albuquerque and always being excited. How cold the stickers on the monitors were for the echos, how as I got older, having my shirt off became more embarrassing, and how I was always given a good diagnosis after those appointments.
I take much comfort in the fact that sweet Koralyn won't have memories of this time. I take comfort in knowing that at one time, I was the bloated toddler in the hospital bed with tubes and wires keeping me monitored and alive; and now here I am, no worse for the wear. I have such a blessed life, and so many wonderful memories, none of which include those tubes and wires. Only the sometimes itchy battle scars remain to remind me of what we all went through when I was three years old. I wear these scars proudly just like I did then (of course I don't show them off proudly anymore) I am sure our sweet Koralyn will do the same, all the while knowing it is those scars many prayers and Gods grace and mercy that saved her precious life.

"Have I not commanded you, be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9

The Details So Far.

On November 21st we went for our 19 week ultrasound to see the baby for the second time and learn if it was a boy or a girl. We learned that the baby was indeed a girl, which was unexpected and very exciting news! We were also told she had Choroid Plexus Cysts and were told she was too active to get a good picture of her heart. Everything else looked good. Our doctor told us we would take another look at her in 4 weeks to get a better image of the heart and see if the cysts were dissolving. At this point we were so excited about the baby being a girl, and had been through the cysts with Asa that we were not worried. It was very evident she was very active during the ultrasound so not getting good images of her heart made sense. We sent out a prayer request about the issues.

On December 19th we went back for our follow up ultrasound. The baby was still very active and to our joy the cysts were completely gone! The tech kept trying to get good images of the heart but still could not. At the very end of the ultrasound she zoomed in on it and I thought to myself it didn't look quite right. She told us the doctor would talk more about what would happen next. Our doctor told us he didn't have much info other then that they were unable to see the four chambers of her heart but it was hopefully just the equipment. He was sending us to a maternal fetal specialist asap to have them take a better look and probably clear any doubts up. I was more afraid then Amos but still not too frightened or concerned. We sent out another prayer request.

December 21st we went to our maternal fetal specialist. I didn't get much sleep the night before and was very nervous the morning of the appointment. Amos tried to calm my fears and didn't seem worried at all. We went into the dark room with the ultrasound equipment and were surprised to learn that the actual specialist would be performing the ultrasound. With Asa's it was a tech and the specialist came in afterwards to discuss the findings. The doctor was a very sweet lady (pretty much the opposite of the cold man we got with Asa) She started the ultrasound and told us everything she was looking at, things were looking good. When she got to the heart she zoomed in and did the blood flow pictures several times, she then said she would come back to the heart at the end, of course red flags went up. She went on and told us her stomach was normal, her brain and spine looked good, etc. Then she went back to the heart, did the zoom thing again and the blood flow thing again and took a long time. She sighed looked at us and said okay, well your baby does indeed have a heart defect. My first thoughts were okay, well I had a heart defect and look at me! But then she just kept talking and this is where things get fuzzy. A lot of talk about this defect being a big one and quite serious and also a big marker for Down Syndrome. The first question I had was, is it fatal or fixable, she told me it could be either. This defect encompasses several parts of the heart and many defects rolled into one big name. We talked and asked questions, none of which I remember.I had to call the next day to ask her again the name of the defect due to the overwhelming shock of everything, we actually left the office with all these details buzzing around in our heads and when asked what the specific name was I couldn't tell anyone! She left the room for a few minutes and I begin to cry. Amos seemed shocked and was just very quiet he just said he wasn't expecting this at all. She came back in and told us she wanted us to see a pediatric cardiologist because they would be able to tell us a lot more. She then asked if we wanted an amnio to confirm a chromosomal defect with 100% accuracy or if we would be interested in terminating the pregnancy. (She was not cold or unkind, I am pretty sure they have to ask these questions by law) We of course turned both down and walked out with a promise that an appointment would be set with the pediatric cardiologist asap. Of course with the Holidays coming up it might take longer then normal!

Leaving I know we were both in shock and I just remember thinking, how am I not breaking down. I just remember thinking while standing in front of the mirror in the lobby bathroom that no matter what, it was going to be okay because God has a plan and he knows this baby, he made this baby. Amos and I went to eat a quick lunch and talked a lot about how this was going to change our whole lives whatever the outcome, no going back now. Then Amos had to go back to work and I went to pick up the boys from a friends house. The shock wore off for Amos that night but didn't hit me until around 4 the next morning when I woke up couldn't go back to sleep, woke up Amos and had a good deep cry (the kind that leaves you breathless and exhausted)

Now we wait for January the 17th, when we will see the pediatric cardiologist at Cook Childrens in Ft. Worth who is supposed to be one of the best and is currently out of town until the 16th! Waiting is hard, but at the same time I feel it may be God's grace of still being able to feel pretty normal and go on with our lives. I know for me, I feel the prayers of so many and am able to feel peace and joy. I believe this has already made me more aware of what a blessing the boys are and it also makes me want to protect them and be a better mom for them. I have had a few moments of fear, but for the most part just really feel God's grace and peace the joy is different too, more deep and appreciated. I will admit that I am hopeful and also fearful for the appointment on the 17th. Amos and I talk about the baby a lot at night after the boys go to bed, I am so thankful for my husband who can also find strength and peace in our savior.

So now we wait and live out our faith and hope until the 17th when we learn more and then there will be more waiting and hoping and living.
"I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God." Psalm 40: 1-3