Saturday, January 28, 2012

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

Thursday, January 19, 2012

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

Wednesday, January 11, 2012

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

Friday, January 6, 2012

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