Thursday, March 31, 2011


In a desperate attempt to keep myself busy and make the time pass quickly until my appointment on the 5th, I have been sewing like its no one's business. My mom laughs at me because she constantly comments on my new "domesticated" nature. She even said my Dad was a little surprised by the fact I do this stuff. I will say, if you asked me years ago whether I would own a sewing machine let alone use it or enjoy it, I probably would have told you that the cheese had slid off of your cracker. No way, no how. But I do own a sewing machine and I do enjoy making things. To me, its a challenge. I love to take up new things and test my abilities in different ways. I will admit, I am no pro. My stitches aren't always perfectly straight and there are times I have to start over multiple times. But it is oh-so-satisfying when I can get the job done and make something out of what used to be a pile of fabric and notions. 

I started off making my soon-to-be new cousin Ashley (she is marrying my cousin Brandon in June and she's awesome!) a cute little clutch. You see, I promised to be a lot more active in helping her with wedding prep, as I know how stressful it can be. Then we found out about Lukas' heart defect and I became less than helpful. And I felt bad. I wanted to do something nice for her to tell her I was sorry, especially considering how often she texts me just to say she is thinking of me and Lukas or comments on my Facebook posts to say she can't wait to meet him. She totally rocks. It was my first attempt at ever creating something of this nature, but it turned out pretty cute despite some its imperfections. I even made her a customized little label with her and Brandon's names and their wedding date. Just so she would always have something to remind her of that magical moment in their lives when she looked inside. I even tried super hard to find some fabric(s) that matched her wedding colors. 

I also made Lukas some soft soled crib shoes. They are so tiny and sweet that I just want to eat them up. I can't wait until sweet little newborn feet fill them. The ones in the middle are totally seamless and reversible. I finally figured out how to do it!! So more will be coming his way, I assure you.

taken on my phone so I apologize for the grainy-ness
Then I rounded out my sewing adventures yesterday by making myself some nursing pads out of organic cotton sherpa. They are soooo soft. Like the inside of a brand new sweatshirt. I am planning on making more, but it was late and I think Jonathan was getting annoyed with my sew-a-thon.

also taken on my phone - sorry guys! (there are also two of each, just hidden under one another)
My little sewing adventures have definitely been keeping me busy, which is a good thing. I want to make so, so many things for Lukas and the boys its not even funny. I find myself actively having to shut off my brain in order to concentrate on one project at a time. Its just fun and I always think those handmade treasures are so much more meaningful. Even when I got a little frustrated, I still kept smiling because I could see these little projects transforming into something more than scraps of fabric and it made my heart soar. It gave me a sense of accomplishment, which is a feeling I haven't exactly felt privileged to know in weeks past. And it felt so great to share photos with my family and friends to hear them say they thought my projects were awesome. That little boost sure did feel good - even if they do feel obligated to say they like it =)

So now, Tuesday is but a blink away. Its going to be a long appointment, but I am excited to see my sweet boy on ultrasound again. They are doing another growth scan so I am desperately looking forward to seeing how his growth has changed and how big he might be right now, even if it is just an estimate. They are doing another echo too, so I am excited to see that magical little heart fluttering away on the screen and watching it pump so perfectly right now despite its imperfections. I don't really dread these appointment anymore, which I feel is good. Even though I know the appointments are going to be long and the drive downtown in rush hour traffic isn't exactly my idea of a good time, its all for the greater good. Its all part of motions that will eventually land my beautiful boy right in my arms. And I can't wait because its going to be amazing.

So my friends, have a beautiful rest of the day. Hopefully the sun is shining and its warmer in your neck of the woods than it is in mine =) Keep smiling friends and keep on praying for our tiny Lukas! 

P.S. - can you believe we are going to be 30 weeks tomorrow?? AHHH!
Share |

Monday, March 28, 2011

Squirrels and Tractors.

Happy Monday friends. I hope everyone had a good weekend and you all did something fun. The weather here was a bit deceiving. It was super sunny and looked oh so refreshingly warm outside. That is until you actually tip toed out there. Nature was playing a serious joke because it was bitterly cold. I think it only got up to something like 37 on Saturday. Brrr...

But we did have a good weekend despite the cold. Saturday we decided to go on a drive because I have been wanting some woodsy/outdoorsy photos to have printed and hung in Lukas' room. On the way we decided to drive out to Jonathan's uncle's farm and snap a few pictures for fun. 

I have this obsession with combines...don't ask me why
Jonathan's cousin Cadence just got a full time job at John Deere in North Carolina, so these seemed fitting

We had a lot of fun on the farm wandering around and looking at everything. Its the first time (sadly) I had ever really been there and really taken the opportunity to drink it all in. You have to admit, there is something pretty neat about farming. So thank you Marlon and Renee for allowing me to photograph your beautiful property!

Jonathan, the boys, and I then ventured to where my husband grew up. Its out in the country and we found a pretty cute little squirrel eating on top of a fence post. It was fitting because Jonathan has this affinity for squirrels. He constantly makes up these stories about squirrels and its hilarious. We were in Washington D.C. for my grandparents 50th anniversary and we stayed in their beautiful home. They live just down the road from CIA headquarters and Jonathan made up this whole elaborate story about the CIA operative squirrels who took refuge in my grandparents backyard. Needless to say it had my Dad and I laughing quite hard. Oh Jonathan, you silly man.

Is he not the cutest thing ever though?
In any event, it just felt good to relax for a weekend. It felt good to go out and explore and leave some of the worries and cares behind that I have felt in past weeks. It felt good to soak up the beauty of the world around me. And with my family by my side no less. I even got those photos I wanted for Lukas room. Talk about an extra special bonus =)

And so, another week begins. Next up on our agenda is my OB appointment combined with a fetal echo and growth scan on the 5th. Then we meet with Dr. Turrentine on the 13th at Riley, then I have another OB appointment and the beginning of my bi-weekly non-stress tests on the 25th. Yikes. Busy next few weeks coming up, but each passing day is just another step closer to seeing this precious boy whom I love so deeply! And that is definitely something to look forward to.

And even though we couldn't get out and play outside this weekend cause it was a little chilly, I thought I would share a few pictures from the other day of my own two beautiful little squirrels.

His mama makes this same face when concentrating too, haha
and who could forget my little peeping tom - aka Hayden
 Have a happy Monday friends and as always - please keep our sweet boy in your thoughts and prayers!
Share |

Friday, March 25, 2011

Love Heals.

Happy 29 weeks baby Lukas =) Can you believe that I will likely only be pregnant for another 9 or 10 weeks at the most? That just seems mind boggling to me and to be honest - its got me in a bit of a panic. 9 or 10 weeks is not long at all, especially considering how fast my weeks have been flying by. EEK! In any event, here's a not-so-tiny belly picture for you all:

I had a routine appointment at IU today with Dr. Schubert, which went very well. We addressed my concerns and I mentioned the fact I don't feel Lukas move all the time. Only when there is a really strong kick or flinch. Considering his heart defect, Dr. Schubert decided to do a BPP (which is a biophysical profile). It was explained to me that this ultrasound could take anywhere from 10 minutes to 40 depending on how cooperative the baby was. Ours went super fast, as Lukas was feeling cooperative today. The best part? I got to see him practicing breathing. It was the coolest thing I swear I have ever seen. This tiny little being inside me with his special heart was practicing his breathing and he was doing amazing. The tech even told me that most babies at this age only do it for a few seconds at a time, but little Lukas' rib cage was moving back and forth time and time again. I had to wipe away a few tears on that ultrasound table because it was beautiful. It might not be a big deal to some because I know all babies practice breathing, but I got to see my little Lukas doing it and it meant the world to me. 

The appointment itself was pretty uneventful other than that. I passed my glucose tolerance test with flying colors, which Dr. S was happy about. I measured at 28 weeks, which is about on target with his measurements last week. I have another echo and growth scan on the 5th, which should be fun. Dr. Schubert also set up an appointment with us to meet with Dr. Turrentine, who will be Lukas' surgeon on the 13th. Just a consultation to talk about the tentative plan and what things will tentatively look like. So it was a good day all in all.

I have to be honest though. My heart has felt a little heavy this week. My friend Susy told me about a couple who happen to be friends of hers. They found out on Monday that their precious babe has a CHD, although they do not know what as of yet. It brought those memories of the first time we knew something was wrong with Lukas' heart flooding back again. I remember walking out those doors on the day I found out. I couldn't keep my tears from falling strong and hard. I was angry, I was sad, and I felt pain like I had never known. I saw all of these people laughing, smiling, and having a good time and I just wanted to shout at them to stop. I wanted to scream "don't you know what I'm going through? Don't you know I just got handed the news there is something wrong with my son's heart?" I just wanted the world to stop turning so it wouldn't hurt so much. The truth is, the world doesn't stop turning and that's probably a good thing. If it did, I know my heart wouldn't be where it is now. I wouldn't have my head where it is now and I wouldn't be ready to fight this good fight.

I certainly didn't want people telling me that it was going to be okay and that I would eventually come to a peaceful place where I could accept my son's fate and move forward. I didn't want to move forward. I didn't want to go on living this normal life knowing that my son was going to be fighting for his from the word go. Its just seemed unfair and kind of cruel in a way. I didn't want people telling me that I could do this. I didn't want people telling me I would find the strength to go on. But I did find that strength. I can do this and everything will be okay in the end because I believe that in my heart. I needed my time to grieve. I needed to work those steps of the grieving process; not because I had lost someone, but I had lost something. That something was my innocence. That something was the peace and tranquility I had come to know in my previous pregnancies where worries existed, but they were barely visible on the horizon. It made me so very sad to hear of a family going through these same emotions and hardships. It broke my heart in ways I can't even explain. These stories mean so much more to me and touch me so much more deeply than ever before. So to the Teitsma family, please know that you and your beautiful babe are in my thoughts and prayers. Please join me friends in sending this family your positive thoughts too.

Through all of this, I have come to realize something invaluable. Love heals. It truly does.  It can mend even the most broken heart and make strong the weak. With all this said, I leave you with another gift of healing and I hope this one will touch the Teitsma family during their difficult time.

I hope you all have a beautiful weekend and please continue thinking of our boy. I really think your positive thoughts and energy are working because he is doing so very good right now and it makes this mama's heart burst with joy. So thank you, thank you, thank you from the bottom of my heart!
Share |

Tuesday, March 22, 2011

Brotherly Love.

I thought I would do something a little different today. I know some of you don't know these two little beings that make my world go round and some of you don't get to see them often. So I thought I would share with you my two boys; my reason for breathing and living.

What can I say about my spunky little Riley? He is a spitfire through and through. He is charismatic, funny, rambunctious, and has the sweetest smile and belly laugh you could imagine. My firstborn is almost four, which completely boggles my mind. It seems like yesterday I held him in my arms for the first time and I have never wanted to stop. He can make his mama laugh like no one else can. He is a lover of all things Buzz, Woody, Lightening McQueen (from Cars), and now Megamind. 

He has grown and changed so much over the years and I love listening to his cute little voice as he talks us through pretty much everything and my heart melts when I hear him playing with his little brother. 

mommy and daddy waiting for our precious boy to be born
first time holding baby Riley =)
daddy and Riley on the Isle of Palms in South Carolina
Riley's 2nd birthday =)
Riley as we know him now....wild and crazy =)
Then there is my second born. He is my strawberry blonde, docile boy. He is always so laid back and spends about three quarters of his day laughing, smiling, and making the funniest facial expressions you could ever feasibly imagine. 

I love how my youngest (for now) gets shy and meek around people he doesn't know sometimes, but it doesn't take him long to warm up and jabber your ear off. He is probably the messiest eater on the planet and if he had a personal motto it would be "the messier the better." For the little thing he is, he is a bottomless pit. He could eat from the time he wakes up til the time he hits the pillow at night and it wouldn't phase him one tiny bit. The kid loves food I tell you.

Most of all, I love the way he plays with his big brother. They love each other so much and it makes my heart beam with pride and joy when I see them sitting in their playroom together or playing on the swingset in the backyard together. 

the day our little guy became a big brother =)
his "really mom?" face - haha
"whoa dude, whoa."
not such a big fan of the swing last year
our future race car driver =) - he looked like a natural behind the wheel
So I share with you my two little boys who in several weeks are going to be big brothers to a new little guy. I have seen their relationship grow and change so much over these past years and I can't wait to see them with their new baby brother. I know its going to be a change for them, especially in the face of everything to come, but I know they are going to love Lukas so much. I know they are going to take care of him and protect him. And I know they will show him the ways of the world as only a brother truly can. It will be beautiful and I cannot wait. 

My heart grows by leaps and bounds everyday and its because of these two little guys. So to my two amazing little boys I want to say - you have no idea how much your mommy loves you. Thank you for showing me what unconditional love and pride looks like. Thank you for keeping your mommy going and keeping her strong these past few weeks. You are my sunshine and my world and I love you both to the moon and back =)

Well friends, I hope everyone had a beautiful weekend and have a happy Tuesday! Please continue thinking of our boy and sending him your love and positive thoughts!
Share |

Friday, March 18, 2011

Sunshine and Smiles.

That's what yesterday was full of and it was awesome. It was 72 degrees, sunny, and absolutely beautiful. We had so much fun on the first really acceptably warm day to take the boys to the little play park in our neighborhood. We have an awesome swingset in our backyard, but because the yard slopes down it was still a little bit too muddy back there for them to gallop around (although first thing this morning Riley looked out the blinds at the swingset in the backyard and asked to go outside and play, haha). 

pulling Hayden back on the swing, which he thought was absolutely HILARIOUS
he loves swinging - bar none, one of this most favorite things ever
I was super proud of Riley because last year he had this big phobia of going down slides. He just refused to do it. When I got him out of the car he literally bolted towards the playground and immediately wanted to go down the slide - with his brother no less.

aren't they the sweetest little things ever?
dirty mulch hands. which had to be carefully examined
Riley found a bag of Christmas lightbulbs at the park, which he also had to carefully examine
Oh and Riley met a girl. A super cute little blonde girl and her equally adorable red-headed baby sister. He was so cute and bashful as he talked to her with his little shy smile.

In any event, the day was great. My mama came over to take Riley to school since Hayden's post-op appointment was at 11:45 (and he goes to school at noon). She said when she dropped him off Riley wanted a kiss and a hug. Then he was waving at her as she walked away and he was blowing her kisses, which made her teary eyed. Little stinker doesn't even blow mama kisses when I drop him off for school!

Speaking of appointments, wee man's appointment went great! Dr. Cain said he was healing up perfectly and everything looks wonderful! Phew. Dr. Cain said unless there was a reason he needed to see me back, I didn't need to see him again. No offense Dr. Cain, but I hope we don't need to anymore either. 

Next up on the agenda is my next appointment with Dr. Schubert at IU on the 25th. I have some concerns to talk with him about, namely some pretty excruciating back pain I am experiencing on my left side (and left side only) and some pretty intense pressure I have been feeling. I am sure its nothing, but I want to at least double check. Lukas hasn't been moving a whole lot the past couple of days either, which I want to talk with him about. I rarely ever feel him during the day - I mean like at all. But then he will start moving around a little in the evening to let me know he's okay. I know he is getting bigger and there is less room for him to move about in there so maybe I am being overly cautious. Nonetheless, having appointments every two weeks now seems strange. Hard to believe we are at that point already. It definitely makes it go by so much faster. 

And guess what? We are 28 weeks today! Dr. Schubert said ideally he would like to get me to 39 weeks so Lukas is a little bigger, which is a good thing. That means I might be pregnant for only 11 more weeks. That just boggles my mind. I have tried so hard to savor these last weeks since we found out. At first it seemed like a cruel joke in some ways. Like this experience tainted the remainder of my pregnancy. That way of thinking has changed of course. Now I just want to get him here safe and secure and I really want to soak up ever second of our precious time together, despite everything else. This pregnancy isn't tainted at all, its just more complex than what I am used to. And that's totally okay because Lukas is worth it!

Here is a slightly different belly picture for you. Its me at the park taking a load off while I watched my little boys run around and laugh with one another. Kind of crazy how much that little belly is sticking out there now, but I love it =)

Have a happy weekend friends! Be safe and have some fun and as always please keep praying for our sweet boy!
Share |

Wednesday, March 16, 2011

I Tip My Hat.

So I was a little excited to walk out to the mailbox this afternoon to gather our mail. Not because I was excited for the bills that lay in waiting, but because there was a special little package in there today. About a month ago I won a drawing from Happy Hooks Crochet simply for being a fan on her Facebook page. I am a total sucker for a good handmade item so I was completely shocked that I won out of like 500 people (it was a totally random drawing). Anyways, I used my freebie gift card to get a little sock monkey hat for Lukas. Of course, he will be a summer boy so he won't be wearing it for awhile. Therefore, I got him a 6-12 month size one simply so he could sport it this winter. I absolutely LOVE it! Like head over heels in love with it. 

don't you LOVE it?? (ps - do you like my mousepad I made? Its the same fabric that is in Lukas' nursery so its super special)
So a great big thank you to Samantha Andrews at Happy Hooks Crochet. Its perfect beyond words and I cannot stop staring at it =)

I have been in such a good mood this week with the news my sister and her family is moving back to town. A few people have asked me about the time table for when she will be back and I am not really sure. I just know his residency starts in July. So just a few more months til I get to see them whenever I want. WOO HOO!

As I think I told you all, my husband has rheumatoid arthritis and unfortunately his symptoms are not well managed on the medication he is currently taking. So he now has to see an occupational therapist once per week until his symptoms are better managed. He had his first appointment yesterday and he got some good information as well as some exercises he needs to do everyday to help loosen up his joints and reduce the inflammation. He also is supposed to wear braces on his hands at night to help with the inflammation in his joints as well. He sees his rheumatologist every 2 months for a check up and bloodwork. When he sees her again coming up in the next month or so, he will get put on a second medication that will hopefully help his numbness and swelling. Say a prayer that his symptoms start going away soon, as it is terribly hard on him =(

I know its kind of short and sweet today, but there isn't a whole lot of new stuff to report. My little fella has a post-op appointment with the urologist tomorrow to check on how things looks after his hydrocele removal/hernia repair. So hopefully everything looks good and that is the last time we will ever see Dr. Cain (I promise that is meant in the most loving way possible). 

Other than that its kind of a slow week. But tomorrow is St. Patty's Day! Make sure you wear your green (which is my favorite color ever). Have a happy hump day friends and please keep praying for our sweet boy.
Share |

Monday, March 14, 2011

Raise Your Hand If You're Happy

*Raises hand enthusiastically* 

I saw my sister, brother-in-law, niece and nephews yesterday and they told us some really cool news. You see, my brother-in-law graduated from medical school and they moved a little over two hours down south so that he could do his family medicine residency down there and eventually open a practice once it was complete. Well he had a pretty intense calling for surgery, so he applied for a surgical residency here at University Hospital (where I now receive my prenatal care). If he got in that meant they would be moving back to Indy for good and guess what? HE GOT IT!!! That means my sister and her beautiful little family are coming back to my neck of the woods and I am ecstatic, as I have really missed my sister the almost 2 years they have been gone. I am so excited and have the biggest, goofiest grin on my face. Oh I guess I should say CONGRATULATIONS BRANDON!!!! Way to go man!!

Brandon and sweet little Trenton (aka T-Boss) - image courtesy of my sister
my beautiful niece Paige, little Trenton, and my sweet nephew Brayden  =) can't wait to have them back!!! - image courtesy of my sister
My sister asked me this weekend how I was doing with everything and its a question I have been asked a lot in the past weeks, especially since our appointment at IU. The truth is, I still have my moments. Some days are better than others of course. We haven't had a terribly long time to come to terms with everything just yet. Its not even been two months, but we are taking it in a day at a time because that is all we can do. I can't change anything, as much as it breaks my heart. I still cry and I still get upset, but I do that when I am alone; when no one else is around. The truth is, I am still terrified. I wouldn't be human if I weren't. But there comes a point when you have to learn to accept things and move forward. We are taking steps in the right direction and its a good thing. Its part of the process. I think about the "what ifs" and I think about the bad. Again, its part of the process. But I make the choice not to dwell on those things because I can't live everyday of my life fearful for what tomorrow may bring. I have to live in the present and I have two other sweet little boys who need their mama too. So I have to be strong - for myself and for them. I have to put on my brave face and walk the tight rope even though it scares the hell out of me. There is not a second of the day I don't think about these things. Not one second. But I know in my heart things will work out the way they are supposed to and that's what keeps my mind and heart headed in right direction.

I have to keep focused on what positive, amazing things lie ahead. I know its going to be tough. I have no illusions of grandeur that everything is going to be perfect and easy because I know it won't be. But its our story and we are going to make the most of it. Make it beautiful and make it perfect and easy in its own unperfect, uneasy way. My mind is definitely in a much better place these days. Its filled with good thoughts that squish out the bad and its filled with hope and happiness. Our boy is coming into a world filled with people who love and adore him. People who cannot wait to see him and hold him. People who can't wait to watch him grow into the beautiful little soul he was destined to become. And it gets me excited. It gives me hope and it gives me guidance and it gives me that little nudge to keep heading in the right direction. 

So if you want to know how I am doing lately the answer is - okay. I am still a work in progress, I assure you. I am by no means healed entirely and my heart still aches in ways I cannot describe. But I am better. I am going to be okay, I promise. My boy is worth all of it and I won't let anything take away the happiness and sheer bliss I feel when I feel him move squirm around knowing that here shortly, I will get to see those movements out in the open. I will get to hear those sweet newborn cries and see the wrinkling of his perfect newborn skin.

Hopefully everyone had a beautiful weekend and you all soaked in every second of the beauty that is life! Keep on praying my friends! Happy Monday!
Share |

Friday, March 11, 2011

Counting My Blessings.

Today we are officially in the third trimester. The home stretch. I am in total shock and awe today as we reach this big milestone. So to celebrate here is a new shot of Lukas' living quarters.

happy 27 weeks sweet Lukas
I enter the third trimester today with a heavy heart. My husband sent me a text message this morning telling me to turn on CNN because it was bad. Very bad. I turned it on and witnessed the devastation and loss of the earthquake and ensuing tsunami in Japan. Its tragic and I know many families have lost loved ones, their homes, their whole livelihoods. So for those of you affected by this tragedy, please know you are in my thoughts and prayers.

I have also been following a wonderful blog of a family here in Indianapolis whom lost their sweet son Jaxton on Wednesday, March 9th. Please keep them in your thoughts and prayers as they enter a very difficult, heartbreaking weekend.

All of this has me reflecting deeply on my own life today. We are facing trials that we have never known and we are walking a path that is truly barren - at least for us. I have found so much hope, strength, and guidance in the many heart friends I have made in the past several weeks following our diagnosis. That's not to mention the incredible support and guidance I have received from my family, friends, children, and husband. Sometimes its easy to think this is as bad as it gets. That nothing else could be worse than this. And I admit, I have been there in these recent weeks. I've felt emotions ranging from happiness to sadness to anger and hopelessness. I've sat and wondered what the hell I did to deserve this and I have asked myself and asked God why this happened. 

But you know what? My mind is a better place these days. I have realized this is not a burden and its not a curse. I actually feel lucky and blessed in many ways. That may sound strange to some, but I do. I have entered into a very special community with some great resources and I hope to join and expand those efforts in the future. Its changed my life for the better and made me look at the world a bit differently; with more appreciation. The truth is, tomorrow is promised to no one. Five minutes from now is promised to no one. So why not make the most of that time while you have it? Why not live it up and suck every ounce of goodness and beauty from it that you can? That's kind of my new mantra. I don't want to look back on this and realize how much time I wasted worrying over things I couldn't change. Lukas does have a very special heart. This is a fact. I can't change that now as much as I wished to God I could. I don't want my son to go through these hardships, but I can't change it. All I can do is accept it and move forward. It's part of a delicate plan and those blueprints were handed to us for a reason. Now its time for us to make the most of it. To turn it from something bad into something good and beautiful. That's my goal. Not to dwell on the things that could happen, but rather live in the present. Live for the things that will happen. Take it a day at a time and make plans, but be flexible to the changing tides. 

Life is tough. Its real, its deep, and it can be painful. But you know what? It can also be beautiful. It can also be happy, cheerful, and bright. Life isn't something to fear. Its something to embrace and something to look forward to. Do bad things happen? Absolutely. But you can't live in fear of those things. I never imagined years ago I would be here now, facing decisions I never could have fathomed. But its okay. It really is. I probably would not have said that a month ago, but I have come to terms with what is. I have come to terms with our present and our future and its really okay. You know why? Because I know Lukas is worth it. I know his fingers and toes and smiles are going to make all of this a distant memory someday. While I know he will always have this heart condition, it will not make him who he is. It will not define him. He will make his mark on this world in his own way and I look forward to that day. I look forward to seeing who he will become and it will be incredible. I promise.

love him
the results of a yogurt fight - beautiful, right?
I know this post is a little sentimental and deep, but its from the heart. I know I always ask for continued prayers for our son and I will this time as well. In addition to those prayers and positive thoughts for Lukas, I would just like to add in Lisa and Josh Husmann and those affected by this morning's tragedy a world away. 

Have a happy weekend friends and live it up, ok? =)
Share |

Wednesday, March 9, 2011

Good Things.

Yesterday marked a big day for us. We had our first appointment at Indiana University Medical Center and we got to meet a great deal of the individual's who will be involved with my delivery and the care of Lukas both before and after birth. My appointment started with the typical things - weight (yuck), blood pressure, and all those fun things. The nurse also gave me Glucola in order to complete my glucose tolerance test at this appointment as well. And can I please say on the record that it was maybe the most disgusting drink ever? With the boys it just tasted like super sugary, flat Fanta. This was entirely different - and gross. But, back to my appointment.

I chugged it down as fast as I could and then got prepped for an extensive ultrasound. The tech, named Lori, was extremely nice. She introduced herself as well as a fourth year medical student who was trailing behind her to view the ultrasound as well. She explained that they would be looking at all kinds of things and taking measurement after measurement of pretty much everything they saw. She pointed out all of his little bones, his radius and ulna, tibula and fibula, femur, etc. She measured all these, measured his bladder as well as the blood flow around it, his kidneys, his stomach, around his abdomen, around his head, every ventricle in his brain, his spine, etc. She looked at cross sections of his umbilical cord and spine (which was super cool to see), and then she got pictures of his little feet, his face, and his hair. She said he has lots of hair already. It amazed me they could tell that already, but sure enough he does! Lukas is measuring small, which we had expected. I was 26w4d yesterday and most of his measurements averaged between 25w1d and 25w3d. So about a week behind.

Lukas' hair (taken on my phone)
Lukas' little nose and lips (taken on my phone again - so sorry it is a bit blurry!)
his little face and hands below his chin
funniest picture ever - him "laughing" as I like to say =)
When my ultrasound wrapped up, the tech mentioned that Dr. Myers (one of the other cardiologists) would be performing my echo today, but they needed me to move into another room so the echo could be recorded. So switch rooms we did and Dr. Myers came in and introduced herself. She told us about her own three boys when she learned we were also expecting our third and said someone at her church had made the comparison of having three boys to having puppies - they are just all over the place. Very true and those of you with boys will confirm that opinion I am sure. Before she started our echo, she asked if we had any questions that had come up in the weeks since my first and second echo. Since Jonathan was not able to attend my last echo, he piped up about the idea of limitations. She actually gave us some really optimistic news on that front. Dr. Myers stated that pretty much every cardiologist has a different opinion in terms of physical activity and sports that children with heart conditions and specifically those who have had major heart operations should engage in. She explained to us that the big determinant was actually not how the structure of heart is weakened after an operation. She said the breast bone is closed up and heals just the same as a broken leg or a broken arm. She said the real problem is the protective sack found around the heart. When open heart surgery is performed, essentially this sack is destroyed. So that protective barrier is no longer there. She said sports where the object is to hit someone and take them down, as in football or rugby, are probably not the best ideas for this reason. She then stated other sports, like soccer, basketball, baseball, etc. were usually fine. When he gets to the age where these things will start coming up, the cardiology team will perform numerous stress tests just to see what level of physical activity his body and heart can handle.

We then talked about the need for medications and such after his operation. You see, Jonathan was under the impression that Lukas would always have to be on medications to help him from "rejecting" this valve and conduit. Dr. Myers said that Lukas will probably be on Lasix for a little while after his operation, but this does not mean he will be on it forever. They just want to ensure after his operation any additional fluid does not accumulate in his heart or chest, as this could be quite dangerous. She explained to Jonathan that the valve is different than something like an organ transplant where yes, you have to be on immunosuppressants to keep your body from rejecting that organ. While the valve they place will be tissue, it has no living capabilities in that blood flowing through it is the only thing that makes it function. It's not living tissue, which means the body does not reject it. Good news on this front too. 

This conversation of course led directly into the discussion about the conduit, artificial valve, and the common truncal valve. We knew all along that Lukas would need a second open heart operation in order to replace the valve to an adult size to accommodate the needs of his growing heart. Dr. Myers stated that of course these valves deteriorate with time because they are not the bodies own valves and eventually they break down, as is expected. She said more often than not conduit replacements are needed at some point because of stenosis, leakage, etc. They unfortunately cannot predict when that may happen, but she simply stated they often like to get children into at least school age before they do this. With regards to the common truncal valve, she said this was one reason for several echos during pregnancy once a condition like this is found. You see, that common truncal valve will eventually become his aortic valve, so its very important. She said with truncus, there can often be "issues" with this valve because of the abnormal formation of the heart. She explained in a healthy heart, this valve has three leaflets. With heart conditions, there can be up to five and sometimes there is narrowing and leakage in this valve, which causes it to work less efficiently. She noted in Lukas' common valve that there was some moderate narrowing and leakage, which she said was not uncommon. I asked whether they would revise this valve and Dr. Myers stated that they typically do not mess with these valves in babies because it is just too dangerous and too important of a valve. She said sometime in the future, yes, they may reconstruct it a bit, but definitely not during that first initial operation. Dr. Myers said she saw everything that Dr. Darragh had seen and that she was very confident in our diagnosis. She stated I would have repeat echos every 4 weeks to check on that valve as well as his heart. She is also going to set up a consult between us and Dr. Turrentine, who is the surgeon we requested for his operations. This way we can meet him before that time comes and we can hear straight from him what this repair will be like, what to expect, etc. 

that magical little heart and heartbeat (swoon)
When our echo wrapped up, Dr. Schubert and his nurse entered the room. He was exceptionally tall (or at least appeared that way to me), and was very kind. He answered all of our questions about who would be in the delivery room, the course of events, etc. We also did talk a little about my delivery and he stated that he would like to get me to at least 39 weeks, as the bigger Lukas is, the better. I asked him whether Lukas' size was okay and he stated that he is on the small side of normal, which is to be expected with his heart condition. I will go to IU every 2 weeks from here on out, with growth scans and fetal echos every 4 weeks. Also, beginning at 32 weeks, I will have non-stress tests every visit to watch for signs of preterm labor and all that jazz. I was given a huge folder of information and pretty much any and every number I could feasibly ever need to get ahold of the key players in this game at any time of the day. Our appointment wrapped up and then we were taken on a tour of the labor and delivery unit. She showed us the "island" where Lukas will be taken immediately after birth to be assessed by the neonatology team. I was a little sad to learn I would probably only get a glimpse of him immediately after birth, as they will want to take him into this island to stabilize him and assess his heart and breathing needs before he is brought back to me. Dr. Schubert's nurse explained they liked to do things in steps. During my next couple of appointments, I would be given tours of the NICU at Riley, the cardiac ICU, and the pediatric ICU. All of these areas will be necessary for Lukas after birth and after his operation(s).

Oh and by the way - Lukas looks absolutely perfect in every other way. Dr. Schubert said everything, with the exception of his heart, looks perfect. Phew. Yesterday was the first time I have left an appointment like this upbeat and inspired instead of crying my eyes out. There were definitely tears, but for the first time since our diagnosis - they were happy tears. I know our road ahead is long, but I have such a renewed strength in it all. I know this was our plan and I know it was given to us to live and make the most of. 

I know this post was super long and if you read it all, thank you! In case anyone wondered, our bigger boy is feeling better. Unfortunately our second-in-line to the bigness thrown is not feeling so hot. But that totally did not deter him from eating some scrumptious Pinwheel cookies while his big brother was at school. 

love that chocolately little face =)
With all that - I give you another gift for healing and a perfect description of how I feel right now.

Please keep thinking of and praying for our boy! Thank you to everyone who takes even a moment of your day to do so - its pretty incredible to this mama =)
Share |
Related Posts Plugin for WordPress, Blogger...