Monday, February 28, 2011

There You Go Making My Heart Beat Again.

I know I am terrible and didn't update this weekend. Truth be told, I had kind of a difficult time rebounding from Friday. I finally sat down and filled out my paperwork for my appointment at IU, which took me a little while to get through. Then my "old" OB called. And I sat there afterward and cried for a good half an hour or so. She called to tell me that she was going to miss me and she apologized for not being there for my "final" appointment. She said she had been thinking of me and to please keep in touch with her so that she could help in any way possible. It was just a tough thing for me and just another step in that confirmation process. 

Filling out the paperwork for IU was more difficult than I thought it would be. I assumed it was just an initial appointment, but when I got the paperwork it was noted I was scheduled for an "extensive ultrasound and fetal echo" that day as well. It just knocked the wind out of my sails temporarily. All I could do when filling out that paperwork was say "I can't believe I am really doing this. I can't believe this is real." But it is. And I promise I am coming to terms with it all, but every now and again I get these little setbacks. These little flicks in the face of our new reality that knock me down a peg or two.

And although it is a little late, here is the 25 week belly picture I promised you all:


please excuse my grungy attire - it was comfy to work in

The good news is that in working through my "funk" this weekend, I have the nursery nearly complete. I still need to finish up the last bit of the dresser and allow it to cure for a few days before its sealed with Safecoat Acrylacq, but its looking mighty awesome. I really can't wait to see it all finished and in its place. Everything in that room is just perfect to me. Its such a peaceful, calming space, which is exactly what I was going for. I love every inch of it and can't wait to show it off to you all. I thought about posting some teaser pictures, but I think I might just wait til the whole thing is done because it just doesn't do it justice posting it in bits and pieces. So I promise those photos will be coming soon!

In the meantime, we spent a nice weekend just relaxing. Some of you may or may not know that Jonathan was diagnosed with rheumatoid arthritis back in January. He had a follow up appointment to check on his liver and such, since the medication he is on is a chemotherapy agent known to be tough on the liver. He has also been having a lot of numbness in his hands and fingers, which he wanted to check on. His liver enzymes were elevated, which means he needs an ultrasound on his liver just to make sure all is well. In addressing the numbness and lack of motion in his hands, his doctor said the inflammation in his joints can cause carpal tunnel like symptoms. So he is going to an occupational therapist on the 8th (the same day as our first appointment at IU) and getting splints for his hands to use while at work and when doing activities involving a great deal of movement from the joints in his hands and fingers. So its been another eventful week to say the least.

Before I wrap it up, I just had to share a little video clip with you. Riley talks about Lukas all the time. I mean all.the.time. He knows I have been working on Lukas' "bed" and dresser. He knows Lukas is in my belly and he constantly tells me Lukas isn't here yet. We do our "love you train" quite frequently, where Riley will say "love you mommy, love you daddy, love you Hayden." Well, now he's added a new name to that mix. My heart melts when he says "love you Lukas." So in the spirit of being gushy and loving on my little boy who isn't feeling so hot today, I had to share with you all those three beautiful words - "love you Lukas." Everytime I hear those words, the lyrics of Sugarland play in my head - "there you go making my heart beat again" - because that's exactly what it is. It makes my heart beat stronger and prouder. P.S. - Sorry the video is sideways. I forgot how to correct it - whoops.

video


As always, please keep praying and thinking of our little Lukas. Your prayers and words mean so much to me and they keep me strong!
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Wednesday, February 23, 2011

Good Life.

Good morning everyone! Jonathan and I are almost 25 weeks along now, which just seems crazy to me. The weeks really have been flying by and its hard to believe in just two short weeks I will officially be in the "home stretch." I am terrible and forgot to take a belly shot this week, so please forgive me. I promise one this coming week to celebrate the big two-five.

In other news, I have been keeping myself busy with little (and big) nursery projects. I have been in a little bit of a funk this past week or so. In order to work through that little slump, I decided to keep myself preoccupied with pretty much anything I could get my hands on. Last Friday we got the nursery painted in a day, Saturday we bought the crib and some new beds for our big boys, and Sunday I went to a birthday party for my friend's one year old little man. But, we got the crib put together and its sitting in the room next to my oh-so-comfy chair and a little side table. The only other big piece of furniture is the dresser, which my Dad and I worked on together Monday. Let's just say it was definitely a labor of love. We worked on getting it sanded down for many bone chilling hours out in my garage. We had to change the original plan for what the dresser was going to look like, but I really like the new plan too. I can't wait to show it off as soon as its done. 

Speaking of the boys beds, we got those set up in the boy's new shared room this weekend as well. Unfortunately, Riley can't let Hayden have his own bed all by himself so he climbs in with him and they end up with a communal bed. Its kind of funny and cute all at the same time. They love sharing a room and that whole transition has gone much better then I ever could have anticipated.


Sleepy boys

Riley being silly at Grandma and Grandpa's

I have to gush on my mama-in-law a little bit. In the midst of my funk, my husband's parents got me a beautiful little gift. Something for me and for Lukas. Its a necklace from the Open Heart Collection by Jane Seymour. Its an angel with diamond wings and I love it. Its just perfectly perfect. So, thank you Lee and Dave!


I love this necklace - its beautiful

I don't really know how to describe exactly how I have been feeling this week. Nervous, anxious, scared. You name it, I have probably felt it. It was a little worse yesterday when I got those papers - the ones I need to fill out for my first appointment at IU. Its just another confirmation that this is all really happening and not just a figment of my imagination. I am feeling a little more at peace with everything now that I have had nearly a month for it to really sink in, but I still have my moments. I am definitely still scared and there are still days I just want to shut myself in my bedroom and not get out of bed. I still have bad dreams and am still not sleeping great. My husband asked me why I was rushing so much on all the nursery stuff and he told me just to take a break for a while. I simply told him I can't. Its my way of keeping my mind off of things. When my mind starts wandering, I get lost in these projects because it helps to keep me sane. It helps to keep my mind off of those scary "what ifs" and that vast expanse of the unknown. I just think about things I never have before. I have tried shopping for cute little clothes for him several times and I keep talking myself out of buying what I see because I have no idea how big he will be, how long he will be in the hospital, how long his incision will be tender, etc. I dwell on these things. They cross my mind at least once or twice per day, usually more. But when these thoughts turn sour, I always remind myself we are lucky in so many ways. We are so blessed beyond belief. I know our son will have a rich, beautiful life because everyone in my family (including us) will fight tooth and nail for it. And it will be beautiful. All of the little speed bumps will be worth it and we will all come out the better for it. We will appreciate life on a deeper level. We will appreciate one another on a deeper level. We will savor every single second of every single day. It will be beautiful - that's what I tell myself every single day. It will.

So - next up on the agenda is my first appointment with the perinatologist at IU on the 8th. Less than two weeks to go. And as always, please keep praying for our sweet little man!
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Friday, February 18, 2011

Eventful.

That's probably how I would describe these past several days. Eventful indeed. 

As you all know, Tuesday was my final appointment with my beloved OB, Dr. Bemenderfer. I was really bummed to learn that she was actually on vacation this week, so I saw a nurse practitioner instead. Overall the appointment went well and was somewhat uneventful. Blood pressure looked good and all that jazz. I filled out the paperwork to have my files transferred to Dr. Schubert's office and that was that. It was with a lot of sadness that I walked out those doors that final time in my pregnant state. I know I can always see Dr. Bemenderfer for my "girly" issues, but I loved her being my OB with my son. She did such a great job with my delivery and I was so very excited to get to share that experience with her again. This go round just wasn't meant to be and I have accepted that as part of this journey. 

Yesterday was a bit more eventful though. I went to pick up an order from Best Buy after I dropped Riley off at school and to make a long story short, I fell rather hard. I was getting Hayden out of the carseat and stepped backwards onto a bottle or some piece of slippery trash that rolled under my foot (it was extremely windy yesterday) and my foot came out from underneath me. I had Hayden in my arms and I absolutely refused to drop him onto the concrete, which meant I took the full brunt of the fall on my hip and part of my belly. As a precaution I called to let the doctor know what had happened and they immediately wanted me to go in for monitoring, as they said anytime you fall after 23 weeks they want you checked out just to be on the safe side. So I went to labor and delivery for the first time this pregnancy and I am a little ashamed to admit something. The cries of the babies and the celebrations in that ward got to me a little bit. I started getting teary eyed thinking in just a few months that won't be my reality. That's not to say I wasn't happy for those moms and dads and for those beautiful, happy babies that just entered this world kicking and screaming. But, I was kind of happy to be escorted to the little nook that is triage away from the hustle and bustle of the maternity suites. All in all, I was strapped to the monitors for 4-hours. During that time Lukas was moving all around. They had trouble keeping up with him because he just plain didn't like that monitor being on him. I also have some uterine irritability, which I figured I would seeing as I had it with both of the boys. I had some contractions, but they all figured I was safe to go home. So home I went.

Today I have spent painting and cleaning the nursery space, much to the dismay of my mother and husband. I actually set out to only get started on the painting and ended up doing the whole things - whoops. We are heading to get the crib tomorrow and some new beds for our big boys too. So Jonathan's parents ever so graciously offered to watch the boys while we did our thing. I am also planning on getting the dresser for Lukas sanded down tomorrow to start the processing of staining and painting it, which I must admit I am way excited about. I have been itching to do it all winter and it looks like the weather might finally cooperate long enough for me to do so.

Other than that, I am doing okay. Just trying to take it a day at a time and let everything sink in. I am to the point now where I have accepted it for what it is. There is no sense in me upsetting myself over things I cannot change. So I am in the mindset now that I need to make the best of it and try to enjoy the remainder of my pregnancy while I can. I know there will be rough times ahead, so I need to save my strength for those intense, emotional moments. A great big bear hug and a thank you to everyone who has checked on me over the past week or so. Love you each so much!

I apologize for the lack of pictures in those post, but there are some great ones coming tomorrow. Think nursery, belly shot, the works =)

Keep on prayin' my friends and have a safe and beautiful weekend!
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Wednesday, February 16, 2011

Quickie.

Just wanted to give a little quick update. I apologize I have been a little absent from this blog for the past couple of days. We have all been slightly under the weather here at the homestead, but I promise a nice, big, long posting tomorrow chronicling my final appointment yesterday with my beloved OB (tear).

Until tomorrow my friends....keep praying!

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Saturday, February 12, 2011

Difficult.

As of yesterday, we are officially 23 weeks. Each week literally just feels like it is flying by. So in honor of the big two-three, here is an updated snapshot of the ever growing baby belly:


I just noticed the bottom of my shirt was rolled up...grrr I hate that!

This week has been....difficult. I won't sugar coat it. I have had a tough time since my second echo. I think its just the confirmation that this is the "real deal" that I have struggled with this week. All of that fear of the unknown I had allowed to soften and melt away returned with a vengeance. A big part of that came from the phone call I received yesterday. The Maternal Fetal Medicine office called me with my transfer information. My first appointment at IU with my new perinatologist is March 8th. I will be seeing a fantastic physician named Dr. Schubert, whom I have heard miraculous things about. I was asked when my next OB appointment was scheduled, to which I replied this coming Tuesday the 15th. They told me to please keep that appointment, as they had spoken with my OB and the OB nurse at the practice who were updated and informed of the need to transfer hospitals and prenatal care. She then told me this would be my final appointment with my OB and I have to admit something. When I hung up the phone, I cried. Hard. I hate that my relationship with this amazing physician whom I love and trust is ending so prematurely, even though my top priority is doing what is in Lukas' best interest. I know that means a transfer of care, but I still had a difficult time with it. Harder than I had anticipated anyway.

I have also had some trouble sleeping lately and I have nightmares which wake me up when I am finally able to fall asleep. I know this is just those subconscious fears shining through in their own unique way, but there have been many nights these "dreams" have woken me up in tears. Big, heavy tears. During the day my mind just runs wild; like a mouse in one of those wheels. Its hard to turn the thoughts off. Its hard to tune out all of these "what ifs" and worries I have about the future and how this or that might affect Lukas and the boys.

I was on the phone with my mom the other day and she talked about when we spent the day at Paige's volleyball tournaments here in town. She told me she had to drive around for quite a long time afterwards because she got to thinking about all of this and it upset her. She said she has looked through pictures from my childhood and just thought about the fact that you never know what the future holds for your children. I found myself doing this just the other day. I looked back at pictures on my computer and albums I have on Facebook. I thought about this very fact. I even looked at pictures from Richard and Mandi's wedding in September when I was pregnant and had no idea and just thought about the fact that I never would have guessed what the months ahead held for us. What defining moments and what new story lie in waiting. Its changed my life. I never thought about these things in the past nor had I ever prepared myself for something of this magnitude. Something that would rock my very existence to its core and force me to make decisions I never dreamed I would be making. But, I think about how this has changed my life for the better too. It makes me looks at things differently and view the world in a different light. Although my heart aches beyond comprehension, I love Lukas so much. I feel this immense sense of pride and joy at just knowing I get to be his mother. God could have chosen anyone, but he chose me. I get to hold him, kiss him, love him, and comfort him. I get to watch him grow and change. I get to watch my boys become big brothers and witness first hand their unconditional love and pride for their new little brother. In the face of all the difficult things to come, these beautiful points are what keep my heart beating and keep my head from totally fogging. God chose me for a reason and I am determined not to let him down.

Remember that book I told you about? The Twelve Gifts for Healing by Charlene Costanzo? Well, in that book, the second gift for healing says: may you release all regrets and resentments. I have a lot of regrets in my life. Too many to mention. I haven't always made the best decisions and I have resented myself for making some of the foolish mistakes I have because they did hurt and effect others. When we first learned of Lukas' diagnosis, one of the very first things I thought was "this is my punishment for the stupid things I have done; for the hurt I have caused." I know God doesn't work that way though. He doesn't punish and he doesn't cause bad things to happen. So today I am officially releasing all of those regrets and resentments. Think of it as just one of the many steps in my own process of healing and changing for the better.

I promise I will wrap it up. I know this post is overly sentimental and I apologize for that. On a brighter note, my boy is back to himself now. He was even talking to me under his door the other day when he was supposed to be napping and I got to witness him falling asleep talking to his mama. And it was precious. The temperatures are also warming up a bit which means this frost bite inducing cold is beginning to dissipate along with the snow and ice accumulated on every inch of Earth around here. 


My sleepy talker - I promise I moved him to his bed as soon as I took this picture =)

I know I ask this at the end of every post, but please keep praying and thinking of our little Lukas. I know all of these positive thoughts flowing out into the universe are doing good =)


Have a lovely weekend everyone!
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Thursday, February 10, 2011

Strength.

This was something I searched long and hard for yesterday. I had this image in my head that yesterday's echo was somehow going to be easier than the previous one. I knew there would be tears, there always are, but I figured I had heard all of this information before and nothing could really surprise me. The appointment was made easier by one presence though. My sis-in-law who volunteered to come with so I wouldn't have to be alone. She had worked the evening before (she's a nurse) and weathered the blistering cold just to come and give me support and some much needed hugs. So, thank you Mandi. I love you. And thank you to everyone who volunteered to come with me too. 

The echo itself was pretty much the same as the last. I had a different ultrasound tech during the first part of the appointment than I have had previously, but she was great. She was a young gal who told me all about her two boys. Mandi, the tech, and I all shared some nice smiles and laughs while she did a quick growth scan to make sure Lukas was still growing well. Thank goodness he is growing beautifully and all of his other major organs look beautiful. Phew. She handed me a picture she had printed out of his little face with his hands nearby and I laughed with Mandi as I told her that he looked like a little grumpy old man. But that picture was wonderful and I just looked at it and imagined my sweet boy growing inside.


My little grumpy man

Dr. Dungy-Poythress (Tony Dungy's sister! how awesome is that?) came in and hummed as she showed me each of the organs. She then said everything looked great. She even complimented the cross necklace I wore around my neck. Sweet, huh? She stated Dr. Darragh was running a little behind, but would be in to see me in just a few minutes. While we waited Mandi and laughed. We made fun of our husbands and talked about Riley and Hayden. Then Dr. Darragh came in the room and apologized for running behind. He had a family practice resident with him this go round and he got down to business.

Dr. Darragh went to the heart and was discussing with the resident what he saw as he tried to focus since Lukas was bouncing all over the place. Dr. Darragh told me he was still confident in his original diagnosis of truncus arteriosus type I. Then he answered some of my questions. He explained each of the different forms of truncus and said that while it would not be easy, type I is the easiest of the three types to repair. He then told me about the different valves they used, which was a little interesting. I just assumed it was a mechanical valve that would be placed, but that assumption proved to be incorrect. Each type carries its own set of pros and cons, but both are viable options.

Then we discussed a little more about Lukas' delivery. He said it would be a little scary looking because there will be a lot more people in the delivery room than I have ever been used to. He said there will be a neonatology team to check Lukas out, as well as a cardiologist or two in additional to the perinatology team who will actually perform the delivery. Barring everything looks good and he appears not to be in distress, the plan is to hopefully have him spend a couple of hours with us before he is transferred to the NICU at Riley for monitoring. We even discussed how nursing would work, since I knew he would probably would not be as strong as either of the boys.

Then we moved into the valve replacement operation. He said this generally happens at 5 to 6 years of age, but could happen sooner or later than that depending on how he grows and when the needs of his developing heart change. It could be as soon as 3 years old or it could be later than 5 to 6 too. Unfortunately, they can't make that prediction until little Lukas is actually here and we see how the first operation goes. He explained there would be slightly less risk involved in the second operation just simply because Lukas would be older and his heart would be a little stronger by that time. 

Then I asked the question I had thought about a million times. And deep down I knew the answer, but it was rough to hear. I asked Dr. Darragh if the second surgery would be open heart as well, to which he replied it would be. Each and every operation Lukas will require will be open heart, as they simply cannot do it another way at this point in time. At that moment I felt the Earth disappear beneath me. The only thing that was running through my mind is that we wouldn't just have to go through this once. And by the time the second operation comes around he is going to know what is happening and I can only imagine how scared he is going to be. He also told us to basically look for the symptoms of congestive heart failure, because these are the symptoms I will notice if something is wrong. I used to work in a hospice unit some time ago. I had many patients who were in congestive heart failure, but they had each lived these beautiful, rich, robust lives. Our Lukas? Well, he is going to be fighting to live this rich, robust life from the word go. And that thought drained me. But, like a mama bear, I am ready to fight for my cub. I will not give up on him.

You see, I forewarned Mandi about how my post-appointment breakdowns usually worked. I told her my telltale signs that I was fighting off tears, like the fact I twitch my nose a lot. When Dr. Darragh went over all of this information again and answered each of my questions, I am sure she saw that nose a-twitchin' many, many times.  I also told her that I usually managed to hold myself together while in the office, but as soon as those doors closed behind me it is like someone unleashes the flood gates. And she described that whole feeling perfectly later in the day. She told me she understood why because when you are in the office it is like you are in this different world, but as soon as you walk out those doors you are back in reality. And she is so right. Its like a big, hard slap in the face as soon as those doors close behind you.

With that information in mind, our appointment wrapped up. Dr. Dungy-Poythress came back in and told us since we were transferring to IU and the same cardiology team would see us there that there was not a reason for me to have a follow up appointment with them, as Dr. Darragh wanted another check up with him in about four weeks either at that office or IU. She walked us outside and wished me the best of luck with everything. And when those doors closed and Mandi and I waited on the elevators, the tears came strong and hard. I tried to fight them off, but I couldn't. And Mandi just hugged me and told me she was sorry and she knew how hard this was on me. On the way down to the ground floor Mandi told me what a wonderful mother I was and how she knew we would get through this as she just rubbed my back. When we got down to the lobby, Mandi told me to please call her if I needed anything at all and asked if I was okay to drive. She's a doll and I am so very thankful she came with me so I wouldn't be alone.

The appointment was harder than I thought and it literally drained every ounce of strength I had. I know this is how things will be. I know everytime I have an appointment that the fear of the unknown is going to return. More than anything, I just cry for my boy. I wouldn't trade him for anything in this world, but my heart just aches for him.  It aches for the hardships my baby will have to endure. I know I am not the first person to embark on this journey, and I know I will not be the last. And my heart aches for that simple fact as well.

Oh, just so you all know Hayden is pretty much back to himself today =) Isn't it amazing how resilient kids are?

Brother time on the couch with their Pillow Pets and Hayden's favorite blanket

Thank you again for all your prayers, positive thoughts, and well wishes for our little Lukas. We appreciate them so deeply and please continue to keep him in your prayers guys.

P.S. - I think we know now who is going to be doing Lukas' operations. His name is Dr. Turrentine and from what I understand he is pure magic in the operating room. He had been recommended to me by a new heart friend, my sister, and my mama-in-law.  Dr. Darragh absolutely recommended him also and said we would do everything possible to ensure we secured him. That made this aching heart smile =) And sorry about the lack of pictures today. I promise more next time!
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Tuesday, February 8, 2011

The "S" Word.

Today was one of those days I have been dreading for the past month or so. Hayden had surgery today and I am sure you are probably wondering why. Well, from birth Hayden has had a hydrocele. At first everyone told us not to worry about it because 9 times out of 10 they just resolve themselves. When he turned a year old, everyone was still sure it would go away. When he turned two, it still had not dissipated. In fact, it had actually gotten bigger as time had passed. So, we saw a pediatric urologist and surgery was set to remove it. 

So, today was the day. I woke up at 5am and started the slow process of getting myself dressed and waking the littles up. I figured Riley would be ticked, but he was actually in an insanely good mood for being woken up at 5:30 in the morning. We dropped him off at grandma's and made our way to St. Vincent to see Dr. Cain. When we got there and got Hayden undressed and in his hospital gown it goes without saying that Hayden knew something was up and he was not pleased. Not in the least. Then the tears started as Dr. Cain and Dr. Moore came to talk with us about the operation and how his anesthesia would work.


Big baby tears =(



Once the doctors left before he was wheeled back, he cheered up a bit. When the nurse came in to take him back to the OR he was happy and she took him back in a nice red wagon. He had no idea. He never even looked back at us. They told us the surgery would take around 45 minutes to an hour and they would come get us in the waiting room as soon as he was brought back to his room. So we waited. Jonathan and I talked about what the wait during Lukas' surgery would be like and in some way I just couldn't explain Hayden's surgery, regardless of how minor, meant more. When we looked up we realized more than an hour had passed, but didn't think much of it since we knew it took time to get him to sleep, get the IV and breathing tube in place, and do the caudal block before the surgery even began. When that hour stretched into two, we got nervous. Finally a nurse came and got us and said Dr. Cain would be in just a moment.

He came in rather quickly while our boy was walking up and man was he angry. He was thrashing about like crazy and apparently anesthesia turns you into the incredible Hulk because he was strong as heck and hard to hold. Dr. Cain apologized for the surgery taking longer than he had anticipated, but it turned out to be a little more extensive than he originally thought. Not only did Hayden have the hydrocele, he also had a very large hernia that needed repaired as well. Dr. Cain explained the sack of fluid itself was about the size of an orange and had a "peel" on it about 1/4" thick. At the end of the day, the hydrocele is removed, and the hernia has been permanently fixed. Phew.

Then, Hayden slowly started to settle down after a little dose of morphine and he fell asleep in his Dadd'y arms while we waited to go home.


Finally comfortable with Daddy

Finally, we got the word they we were good to go as long as we felt comfortable. You could tell little Hayden was uncomfortable, but we knew he just needed to go home and relax with his favorite pillow and blankie to feel better. 


See his poor little hand where his IV was? (tear)




We picked up our big boy from grandma's so he could go to school and he was so concerned about his little brother. Everytime Hayden would whimper Riley chimed right in saying "its okay Hayden, its alright." How precious is that? He told us Hayden was hurt, but he was awful jealous of that Buzz Lightyear bandaid on Hayden's hand. He told us his hand hurt too and he wanted a Buzz bandaid like Hayden.  

Thankfully, we are home resting comfortably now. I am sitting on the couch next to my sleepy, drugged little boy. We will keep his pain medicine up for the next 48 hours or so, then switch him over to regular Motrin. For now, we are keeping him comfortable and as pain free as possible. 

So while my little boy sleeps, one final thought before I check out for the day. My second echo is tomorrow, which is giving me some anxiety. Turns out I have to go alone after all and the idea of that makes me a little nervous. All of those feelings rushing back and having no one there to comfort and reassure me is going to be rough indeed. I will get through it though. Just par for the course, I have to keep telling myself that. 

Have a happy Tuesday everyone and please keep up the thoughts and prayers for Lukas. Its like a great big bandaid for my heart to know people out there are thinking about him.

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Sunday, February 6, 2011

Super Sunday.

We are 22 weeks now as of Friday and it seems time is just rushing by. I have always found it a little interesting that as we count up in pregnancy, we are also counting down too. While I love knowing each passing week is a step closer to meeting my little boy, it is also a step closer to that vast expanse of the unknown. And because I have been asked numerous times for a "belly" shot, here you go:


Yes, sadly my t-shirts are becoming too small (tear) - and please excuse my wet hair

I have to say something about the e-mails I have received and the people I have met as we embark down this path: what an amazing, supporting community. Wow. They have reached out me to me with open arms, sharing their trials and triumphs and giving me tips and advice to put the next foot forward. They have cradled my aching heart and helped to give me comfort and strength when I have needed it most. I even met a mama from Indiana whose son also received his care at Riley, where Lukas will receive his. Isn't that cool? While I wish no one had to go through this and while I wish no one had to be apart of this "club," I am deeply honored to go through this with some of these amazing folks. I have had so many people e-mail me stories or send me messages on Facebook and it helps so much. To see the faces of these beautiful children who have survived obstacles most of us will never know is nothing short of incredible. Its miraculous. Each of these amazing little beings are huge inspirations to me and I wish I could scoop every single one of them up (along with their parents) and just hug them and tell them thank you for touching my heart. Just a couple of my new "heart" friends can be found in the sidebar of my blog - take a peek at their pages and you will see what I mean. They are miracles. Living, breathing, beautiful miracles. 

I am a little embarrassed to say that I really didn't know much about heart defects before we found out Lukas had one. I had never even heard of truncus. You just never hear much about it really unless you are put in that driver's seat. You hear a lot about other things, but never much about congenital heart defects. I think that's a tragic fact considering heart defects are the most common birth defect and the leading cause of death from a birth defect during the first year of life. Not to mention about 40,000 children are born with a heart defect every year and at least 8 out of every 1,000 newborns have a heart defect, just like our Lukas (fact courtesy of Saving Little Hearts). This coming week is congenital heart defect (CHD) awareness week. I sincerely hope you all will join me in helping to spread information and awareness about defects just like Lukas'. This amazing community of fighters need your help because only  a relatively small amount of funding is currently available for parent/patient educational services, research, and support. Let's change that for the better, shall we?


(Banner courtesy of the Congenital Heart Information Network)

Today is Superbowl Sunday and we are going to my mama-in-law's for a little get together before the game begins. Then my Daddy-o is coming over for pizza and some good ole' fashion screaming at the television despite the fact no one can actually hear us. Oh well, that's part of the fun, right? And we are supposed to get more snow. We got 3 inches or so yesterday and our neighborhood looks like an ice/snow covered wonderland. Its pretty, but I am kind of over it. So if spring could make its way to our neck of the woods, that would be lovely.


View out my front door

Crazy looking icicle forming on one of my bushes from the water dripping down

As this weekend wraps up and another begins, a lot of things are on my mind. Hayden's surgery is Tuesday. Even though its a minor operation, it somehow means more now. It strikes a little more fear than I would have ever known before, even though this is not his first time going under the knife. But, he is in good hands and I know it will be just fine. My repeat echo is Wednesday also. To be honest, the idea of another echo scares me. It brings all of these "please don't let it to be true" emotions flooding back and I have worked ever so hard to push past them. This time Jonathan won't be with me either, but my mama-in-law will. That brings me some comfort knowing I won't have to relive all of this information again all by my lonesome. I know she and I will have lots of new questions for the cardiologist and I know another breakdown will be waiting as soon as those doors close behind me. I just need to keeping praying and keep thinking of all the positive, beautiful things that are to come. I need to push that fear aside, even if it is hard. I need to keep my mind busy with good things, like some of the projects I have planned for the nursery we are finally starting on. Think sewing machine, paint, all kinds of good things. I get a little giddy just thinking about it.

I hope you all had a lovely weekend! Stay safe during the Super Bowl craziness and keep on praying for our boy!


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Thursday, February 3, 2011

When Time Stands Still.

A week has passed and at many moments I feel like time really is standing still. Yesterday was an especially hard day. Thinking back to the appointment when we received our official diagnosis. I thought back to how hard I was shaking when I walked through the doors of the Maternal Fetal Medicine office. How my heart was racing and I struggled to hold back tears as we were walked back to the ultrasound room. How my heart sank when Dr. Darragh told us what he saw on the echo. It brought many tears yesterday. Many indeed. I found a lovely poem that explains just how this feels. It is entitled "When Time Stands Still" by Debbie Hilton-Kamm. Here is just a snippet of what it says (you can read the full poem here):

It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still
In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?

It all started with news that I felt was impossible. This couldn't be happening. Not to me. Then the fear came strong and hard. Every ounce of fear I knew within came bubbling to the surface and the tears and shakes began. These thoughts did go through my mind. Will I see my son grow up? Will I see his first birthday? Will I see his beautiful, bright smile? Will I see him laugh and play? Will I see him graduate high school, go to college, get married? In that moment I wanted the world to stop spinning. I wanted the fear and the sadness to stop. I wanted all of these thoughts that were running through my head to stop.

Today, I am encouraged. There are still tears and there will be. That is only to be expected. I sat with my hands on Lukas for quite some time today and just closed my eyes. I envisioned his perfect little nose, his tiny little hands and feet, his little pink lips. I just prayed and thought about my boy growing day by day within. And it helped. It helped to allow some of that fear soften and melt away.

I started the process of looking for support groups both locally and online. I researched truncus a little more to get a better understanding of just what we are dealing with and letting my head wrap around it. What I know is that I want to be as educated as possible on his heart defect. I want and need to be prepared for what to expect in the months to come, how to adjust to being a mommy with a heart baby, and how to ensure he is receiving the best care possible. I found some great stuff that is helping me to formulate some new questions for our upcoming fetal echo. I found lots of great facts too, like truncus occurs in less than 1 out of every 10,000 live births and accounts for 1 percent of all congenital heart defects. I also found another great image courtesy of the Lucile Packard Children's Hospital at Stanford which shows how oxygenated and deoxygenated blood mix within the heart of a baby with truncus.

Image courtesy of the Lucile Packard Children's Hospital at Stanford

We had a big ice storm the other evening and we are hunkered indoors to stay off the icy roads.  I have been talking to the boys about Lukas and his special heart during our time indoors. Riley points to my belly and says "Lukas in there" and all that runs through my mind is be still my heart.

Hayden taking a peek at the ice outside - sorry its a little "noisy" I had to set my ISO pretty high due to the setting sun
Ice covered bushes outside

In the meantime, the boys and I are spending lots of time snuggling on the couch, reading books, playing with trains and cars, and laughing. I am even crocheting some blankets for Lukas. The boys get very intrigued by what I am doing and Riley likes to stroke them and say "this for Lukas Mommy." I keep them in the drawers of my desk while my fingers are recuperating (to keep the cats from running off with my yarn) and I love that Riley knows where those blankets are and who they are for. He often walks up to my desk and pulls those drawers open to take a peek. And he just smiles.

Don't you love the blues, greens, and yellows? I LOVE it!

We are slowly getting prepared and hopefully we will be starting on the nursery soon. I think that will help with everything. It will keep my mind busy and keep me focusing on spending time with my little boy in that room. Watching my big boys play and cuddle with my little boy in there. I can't wait. And as always, keep our boy in your thoughts and prayers!

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