Thursday, April 28, 2011


It was a better day than I thought it was going to be. I paced around nervously all morning and pretty much had nothing to eat or drink until after our appointments simply because I was so nervous I basically had zero appetite. I was sick to my stomach and I just wanted to get the show on the road. Finally that time rolled around and I set off to meet Jonathan at Riley. We had a good laugh or two while waiting and I think with each passing second my heart beat a little harder and a little faster. Then we saw him walk by in that clean white coat and scrubs with a stethoscope around his neck, a coffee cup and a million papers in hand. Jonathan just kind of starred at me for a minute and asked me if that was him as I shook my head and said "I'm pretty sure." He looked so serious and determined. Then a second later he walked back out without those million papers in hand and only a coffee cup. Then he smiled as he walked by and I said without hesitation, "that's him." 

Finally they called our name and we walked back to that exam room. Dr. Turrentine was in the room next to us with another patient talking diligently. His nurse walked us into the room and explained that they he should literally be with us in a few minutes as she closed the door behind her. Then Jonathan and I waited some more. We shared some more laughs and cracked a few jokes about one another until that moment came. That knock on the door and the swift entrance by the man who would be operating on our baby boy. Dr. Turrentine introduced himself and I asked him how his medical mission trip went. In that instant you saw his eyes totally light up and he said is was awesome. He talked to us more about it, but more on that later.

He talked to us about how often truncus occurs. He said that it is one of the more rare, uncommon defects out there. He went on to tell us Riley sees approximately 3-4 cases of it per year and that they are actually one of the more high volume hospitals in the nation for it. That was a little surprising. I knew it was rare and I knew it wasn't overly common, but that figure surprised me a bit. He said while the defect itself is rare, the techniques they use to correct it are not. He told us that many of the same things they would do to repair this defect are techniques and operations they use in many other defects as well, such as the VSD repair. 

Then Dr. Turrentine went into what the surgery basically entails. He told us that most cases of truncus are more like a 1.5 rather than simply being a type I or type II. He said most of the cases he has seen are not quite a "true" type I, but also are not quite a "true" type II either. They are generally somewhere in the middle.  In  any event, he described with great detail how the operation would be performed, where things would be cut, nipped, reconstructed, attached, and patched. He told us about the repair of the VSD and what that would entail as well. One thing that did surprise me was the idea of the conduit. I thought it was going to be an artificial graft so to speak, but it turns out it will be a cow vein with the valve already in it. He mentioned leaving the breastbone open immediately following surgery as well. They will close up the skin on the outside, but the breastbone will be left open. He said they typically do this in truncus repairs because introducing a foreign article (i.e. the conduit and valve) increases swelling a bit. The conduit he said also adds a bit of extra volume in the beginning as well, so the breastbone is left open in order to accommodate for this swelling and minimize any compression. The breastbone will then be closed up somewhere after the 96 hour marker after surgery when the heart function has returned to somewhat normal and after he is off the ventilator, feeding, etc. He also explained to us that actual operating time not taking into account time for anesthesia, monitor placement, stopping the heart and placing him on the bypass machine and restarting the heart/removing him from the bypass, would be approximately 3-5 hours. That only reiterated the fact that it will be the longest, hardest day of mine and Jonathan's lives.

This 96 hour marker represents something more significant as well. Jonathan asked Dr. Turrentine what the time table looked like when Lukas would be "out of the woods" per say. Dr. Turrentine explained with the majority of medical procedures those first 24 hours are the most crucial. In this operation that time table is different not only because of the complexity of the operation itself, but also because of his age. Dr. Turrentine said in this instance that 96 hour window represents the crucial time. This encompasses that period of time when Lukas will be taken off the ventilator, when various machines, pumps, and tubes are removed, and when heart function should begin returning to normal. He said once this 96 hour window comes and goes with little or no issues, they feel the patient is "out of the woods." I then asked him how the typical recovery goes for this kind of operation and he said typically it goes very well. This is one of the only benefits of Lukas being the age he will be at the time of his operation. He said that babies traditionally do very well with this operation because they are fairly sedentary at this stage of their lives anyways. They are not getting up and down constantly or struggling to do things. For the most part they remain very calm and stable, which is conducive to a good recovery. So good news there.

Dr. Turrentine spoke with us about the potential complications of a surgery this intensive. He said one of the biggest risk factors and complications is that common truncal valve, which will eventually become Lukas' aortic valve. He explained to us again that most children with truncus do not have the typical three leaflets that are found in the healthy heart. In fact, he said most generally have four to five leaflets and can have up to six. The more leaflets, the more opportunity to narrowing and leakage. That narrowing and leakage becomes a big problem if it is too severe. He said the more deformities in the valve (i.e. the more leaflets it has or how well it is formed) the more chances for these kinds of complications. If the leakage and narrowing is too significant they often have no choice but to replace that valve all together too, although they really, really like to avoid messing with it at all. He said that he did remember Dr. Farrall (the cardiologist) talking to him about the fact she was almost certain Lukas had three leaflets in this valve, which he said struck him as interesting because of how uncommon it was for a truncus baby to only have three leaflets. So he told us hopefully this proved to be true because that would be a big step in the right direction and that the only big concerns were watching for narrowing and leakage.

Dr. Turrentine then talked to us about his mission trip to Amman, Jordan where he operated on little ones who would have no other way of receiving the surgical attention their precious hearts needed. And he said something that has really stuck with me today. He told us he loves these mission trips so much because to him it is the purest form of medicine. He said its not about how much money you are going to make doing it or how much recognition you receive. Its just the sheer idea of helping someone and addressing a need because its the right thing to do. Its only about helping another human being and giving them what they need to continue living their lives to the fullest. I have always had that idea of medicine and admired those who shared that idea as well. For me medicine is beautiful simply because of its giving, healing potentials. The idea of traveling half a way away to help a child grow and live out their lives is pretty awesome. When he told me what his idea of medicine was about, which is purely helping people, I knew we had made the right decision in a surgeon. You can tell Dr. Turrentine is there doing these wonderful things he does because he wants to help others. He wants to help people heal and he wants to see the fruits of his labor in a smiling, happy, healthy child down the road. You can tell its not about the recognition and its definitely not about the pay. For me, that was awesome and it made me feel so wonderful to know a man like this, with those ideals, would be operating on our boy and providing him with that opportunity to continue living happy and healthy. All and all that appointment went great. He answered all of our questions very thoroughly and definitely equipped us with as much knowledge to know what to expect as he could. He was extremely nice and we are so happy with our decision. He even made us laugh by saying Dr. Farral (who went with him on the mission trip) had more energy than a toddler and that she was wild, haha.

After our appointment with Dr. Turrentine we had another echo. We literally walked across the hall and Dr. Farral performed the echo. The beds were awesome because they were actually relatively comfortable, full beds rather than those uncomfortable ultrasound tables you lay on. Dr. Farral reiterated this would likely be the last time they would scan me since I would be 38 weeks the next time a scan was needed and I would be delivering around that time anyway. So she took her time and measured pretty much everything inside and outside the heart you could possibly imagine. It was crazy. It was pretty much the same old news, although she did tell me there appeared to be some narrowing in the truncal valve. She said unfortunately she could not tell via ultrasound whether that narrowing was occurring in the valve itself or within the artery at this time. She also said there did appear to be some leakage at the valve, but this is something only time would tell for sure. So for now, we wait until delivery when they can get some more detailed views of his heart.

I left feeling far better than I thought I would. Granted, echos are always a little difficult for me. This time was no different, especially considering we got an amazingly clear view of that common truncal valve. We really got to see what it looked like up close and personal and that truth just sticks with me long after the machine is turned off. Those ultrasounds don't lie and I know we have some rough times ahead. Each echo is just a confirmation of that, so it sometimes takes me awhile to rebound from it. Hearing about the operation itself was tough of course, but encouraging at the same time. Its tough to hear because its my son; my baby. But it was also encouraging finally meeting Dr. Turrentine and knowing what capable, awesome hands Lukas is going to be in when that time comes. The roughest part of this journey is still ahead of us, but I just have to take it in stride. Live each day as it comes and try not to overwhelm myself (easier said than done). I just feel like I am walking into the abyss a little. I have no idea what to expect or how things will work once he takes his first breath in this world, but we will deal with it all as it comes and we will get through it. Together.

I know that was terribly long. Unfortunately I didn't get any new photos of Lukas to share with you, but I should have some tomorrow after my growth scan (hopefully). I also need to get the Easter pictures of the boys up, so I will work on those this evening! Up tomorrow is another NST (at 8am no less), a growth scan, and an appointment with good ole' Dr. Schubert. Let's hope I can get him to set a date (fingers cross for the 30th since that is my Daddy's birthday).  

Keep praying friends. I know its helping and it definitely helps this mama for sure =) 

P.S. - anyone watching the royal wedding tomorrow? My mother-in-law is having a wedding party with wedding cake and everything. Yay for an excuse to eat cake, right? =)
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Tuesday, April 26, 2011

Tough All Over.

I know I promised a post today with Easter pictures and the like, but its been a bit of a tough day for me mentally and physically. I am just kind of on the verge of a breakdown at the moment. I'm still not feeling well and am just kind of down today. Nonetheless, I promise to be back tomorrow with pictures and an update of our meeting with Dr. Turrentine and our last echo. 

Say a prayer for us tomorrow friends as we meet Dr. Turrentine for the first time. My stomach is kind of in knots...
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Monday, April 25, 2011

Happy Monday.

Happy Monday friends! I know I have been terribly neglectful of posting lately and I sincerely apologize. I haven't been feeling well and haven't been sleeping well. Needless to say, it has just made for a not-so-fun time for this mama, especially when trying to run after two very active little guys all day long. So please forgive my lack of posting. I have tons of new pictures to share with you all, but I will write up that post for you tomorrow (promise, promise, promise).

I wanted to give you all a quick update on Lukas and I.  We had a non-stress test on Thursday of last week and one this morning as well. Both went great. I had an awesome nurse named Cyndi, who sat and talked with me the entire time I was strapped up to keep me company. She is funny and so full of information. I love listening to her talk about her 40-years of nursing experience and some of the really neat things she has seen. Having so many family members in the medical field, I can appreciate all of these things. In any event, he was reactive and his strip just looked amazing. Sweet Cyndi was so proud of Lukas, as was I. Ready for some more good news? By this point with Hayden, I was in full blown preterm labor. As of now, there appears to be no signs of it occurring again with Lukas. I have uterine irritability, which is what triggered my preterm labor with both Riley and Hayden, but it seems to be holding steady and not causing any additional issues at this point. YAY!!! That is such, such good news. And it definitely helps me to breath a little easier for now.

We are also meeting with Dr. Turrentine Wednesday, which has me a bit conflicted. I am definitely looking forward to meeting the man who is going to be working his magic on our precious Lukas and hearing what he has to say, but I am also so nervous too. I think I have literally paced holes in my floors just waiting for this appointment to roll around. I'm just in a bit of a delicate place right, so I don't know if I can bear to hear any bad or "striking" news. Its hard to describe in some ways; this place I am in right now. On one hand, I am getting so excited to meet this amazing, precious little boy and each passing day is a step closer to that magical moment. Then the other hand steps in and takes control because I also know each passing day is a step closer to the inevitable. Its a step closer to handing over my tiny, innocent little boy to these surgeons who are going to fix his little heart. Its bittersweet in some ways.  In any event, back to Wednesday. We also have our last fetal echo after our appointment with Dr. Turrentine as well. I'm conflicted about that one too. Its definitely hard for me at each echo because its simply a confirmation of what is. Its confirmation that this is real and true. Its hard for me to hear about his defect at each echo and that information just lingers me with for a bit afterwards. But I won't lie; I also love the echos. I love watching that amazing little heart beat away like nothing in the world is wrong. Its so refreshing to watch his heart beat and pump and do what it is supposed to do, even in the face of his defect. So Wednesday will be the last time we see that tiny heart up close and personal before he is delivered. 

Its going to be a busy next few weeks, but guess what? We have less than 6 weeks to go. That seems mind boggling and just totally implausible. It feels like yesterday this journey began and now its nearly over. Well, I guess not over really. Its just an end to one chapter and the beginning of a new one. Less than 6 weeks and my big boys are going to be big brothers. I can't wait to see that magic unfold and I can't wait to see the love in their eyes and hearts when they lay eyes on their baby brother for the first time. I'm 99% certain I won't be able to hold myself together in that moment because I know its going to be beautiful. Speaking of beautiful, check out Hayden snuggled up lastnight with the bunny that was in his Easter basket from my amazing Grandma. He loved it! 

he has the bunny's butt in his face, haha
I have lots of pictures to share with you all from Easter yesterday, so I will get those pictures loaded for tomorrow! Promise, promise, promise. Before I say so long, please take a moment and pray for a new friend of mine, Reese. She recently found out her sweet little Peanut has truncus, just like Lukas. So please keep her family in your thoughts and prayers.

Have a happy start to the week friends! Hopefully it proves to be a good one for you all.
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Monday, April 18, 2011

NST Numero Uno.

My very first NST was this morning and it was somewhat interesting. Little Lukas was apparently quite sleepy because my strip was considered "non-reactive." Basically it just means he was not moving to the doctor's satisfaction. Luckily for me, I had an ultrasound already scheduled. Rather than doing a normal ultrasound though, they just decided to make it a biophysical profile. Lukas didn't cooperate for awhile, but eventually perked up enough to pass his BPP with flying colors. I also got to visit with Dr. Schubert since he was on vacation during my last appointment on the 5th. We discussed this terribly tender spot on my abdomen, which lucky me turns out to be a separated muscle. Unfortunately, that also means there isn't much I can do about it but suffer through it. Oh well. It's all for the greater good anyway =)

Other than that my appointment was relatively unproductive. I will have another NST Thursday and hopefully little Lukas will be a bit more cooperative so another BPP won't be necessary. Its going to be busy next two weeks. Another appointment Thursday, then another NST next Monday, meeting with Dr. Turrentine and final fetal echo on the 27th, then a second NST, growth ultrasound, and appointment the 29th (which just happens to be the royal wedding day too). Oh and I almost forgot to mention we will likely have a delivery date and time within the next two weeks or so. Yikes!!

I have to share one more little thing with you all before I go. First, thank you for being so patient with me while I wasn't feeling well. Still not feeling the greatest, but I'm working on it. Secondly, I got to visit with my brother and sis-in-law yesterday. They stopped by to bring a present for Lukas. When I opened it I nearly burst into tears. It was a little teddy bear wearing an extra special t-shirt and a matching onesie for little Lukas. Mandi (my sis-in-law) said that the nurses recommended little stuffed animals and such for his isolette in the NICU and following his operation. This was just the perfect fit and I love it. So thank you Rich and Mandi! Its perfect beyond words.


Thanks for thinking of me and little Lukas while I wasn't feeling good friends. I hope you all had a wonderful Monday and got to suck in some of the springness we are experiencing here in Indy. Thank you for your continued prayers and support for our littlest Lukas too. I cannot wait to share with him some day all of your amazing thoughts, prayers, and well wishes. See you soon friends (promise)!
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Thank you to Log Cabin for sponsoring my post about updated traditions in my household. To learn more about Log Cabin Syrups (which are all free of High Fructose Corn Syrup), breakfast for dinner, and other new ways to update traditions in your home, click here. I was selected for this sponsorship by the Clever Girls Collective, which endorses Blog With Integrity, as I do.

Traditions is something I definitely value in my home. It was a huge part of who I was growing up and what made my family special. Now that I have little ones of my own, traditions are more important than ever. One big tradition that has been updated in my home is the idea of "drinner" or breakfast-for-dinner. This is something my parents did frequently when I was child and an event I always looked forward to. Of course, back then it was the classic breakfast of bacon, eggs, and toast. We've changed it up a bit in our house to one of our boy's favorites: french toast with confectioners sugar and LOTS of syrup. Riley and Hayden are always a sticky mess afterword, but they love every second of it. 

We've also updated our holiday traditions. Before children, my husband and I never opened presents on Christmas Eve. We didn't wake up with that "have to open it this second" itch that we did when we were younger. Now that the boys have graced our lives and filled our hearts we have our parents over every Christmas Eve and the boys get to open their presents from their grandparents. Of course, they still have to wait until Christmas morning to open the ones from Jonathan and I. Every year we buy them matching button-up Christmas pajamas and they eat it up. They have a hard time going to sleep amidst all the excitement and anticipation.

Even birthdays are somewhat different than they used to. The boys always get their present early from Jonathan and I. Its just our way of quietly celebrating with them and only them. Its our way to enjoy the bright smiles and loud shrieks we receive at giving them a gift that's meant only for them. Its what makes our world go round and I love it. Every second of it.

So how about you all? Any awesome traditions you would like to share with me? 

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Friday, April 15, 2011


Hey friends. I know I have kind of been a zero on the blog this week. I haven't felt good all week, but I promise a much longer blog posting this evening, ok? Thanks for being patient with me!!
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Monday, April 11, 2011


Holy eight weeks Batman! That's the maximum number of weeks we have left until Lukas graces our lives and changes our worlds. Eight at the most. Wow. I know everyone says this, but it feels like I blinked and it all went by so quickly. Its been a bit of a whirlwind since we found out Lukas' diagnosis and things are only going to get busier in the following weeks. It makes the days fly by quickly and its all means a step closer to meeting this amazing boy with such a special heart for the first time. And I absolutely cannot contain my excitement. I've dreamed of that moment and I don't think my dreams could ever compare to reality. As scared as I am, I can't wait.

While I feel for the most part I have been doing okay with things, I did have a bit of a slip last week. After my appointment I had a big breakdown. I got to have an incredible talk with my mother-in-law about things and it really brought back some of those emotions, but not in a bad way necessarily. I think I have tried so hard to push them aside in the past weeks that they all came flooding back in an instant. I had a hard time fighting off the tears when talking to her. Truth be told, I have trouble with every echo. Its just that reminder of what is and what the future holds for our boy. It hit me hard when we first found out about Lukas' diagnosis. I felt like my whole world fell apart in that instant. Like someone had hit me in the stomach as hard as they could and just left me lying there gasping for air. Each echo is a reminder of that feeling. It takes me a little while to shake that feeling after each appointment, but I can generally do it. Tuesday was different though and I'm not really sure why. It wasn't a bad appointment at all. It was in fact a very good appointment filled with some good news (especially about Lukas' valve and his growth). But as the weeks grow shorter our story hits me harder. Lukas' story hits me harder.

The hardest part for me is the sense of guilt and the sense of failure. Everyone tells me that there is nothing I could have done differently to prevent this happening and while I believe that deep down, it doesn't remove those feelings from my heart. I am his mother and my job as a parent is to keep him safe and free from harm. I feel like I failed at that fundamental duty. Every parent has this unwritten code that says we never, ever want bad things happening to our children. We don't want them to face hardships or rough patches in life. We don't want them to suffer, be in pain, or endure things we feel to be unfair. We don't want to stand by the sidelines and watch as these things happen before our eyes and feel powerless to do anything to stop it. That's exactly where I am. I feel powerless. I'm not in control of the situation and truthfully, that's tough for me. I have told you all before - I take things hard. I grieve and think hard and deep. The idea of sitting there watching my son go through these levels of care that most of us will never know in our lifetime gets to me. I thought yesterday about the day Jonathan and I will have to hand him over for surgery and it was almost more than I could bear. No parent wants to hand their child to someone who is going to crack their chest open and stop their heart, even when we know its necessary to keep that beautiful heart beating. 

This week I have honestly wondered where I am going to find the strength to do this. I used to think of myself as a pretty strong person, but I have never had those limits tested to the extent they are being tested now. My heart aches and I would give anything in this world without so much as a seconds hesitation to keep this from happening. Unfortunately I can't stop it. I am powerless in this situation and I just have to believe that things will be okay. I have had numerous people ask me how I am dealing with it all and whether I just try not to think about it. To answer that question - I think about it everyday. Every waking moment its on my mind. Sometimes though we have to pick our battles. Could I sit around everyday and cry over what's happening? Sure. I am definitely emotional enough to do so, but I can't. In this instance, I am powerless. It breaks my heart in ways that are impossible to explain, but I am powerless to do anything different or stop it from occurring. Its reality and I have to face it. I have two beautiful little slices of Heaven sitting next to me as I write this who need their mama. They need me to be whole and be present for them; to take care of them and love them despite the edits to our story. So that's what I try to remember when the days get tough. I run to them and hug them because they make my heart stronger. Their smiles, laughs, and little mannerisms make my heart so, so much stronger. These two little boys will never know what they have done for their mama. Little as they may be, they prepared me for the beauty and hardships that lie ahead because they made me stronger and they made me better. 

Sorry this post was so long and deep.  This blog has really been an amazing outlet for me. Its been so incredibly helpful to me to share my deepest thoughts and feelings with you all and hear the encouraging words so many of you have sent me. They have helped so much and I read every single one of them, usually multiple times. I appreciate every single person who has ever visited our blog, said a prayer for our family, and thought of our little Lukas during their busy day. You guys are incredible and thank you from the bottom of my heart. 

Please continue praying for our boy and please take a moment to pray for the family of Harrison Mack. They lost their sweet 5-year old little boy while waiting for a heart transplant.
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Tuesday, April 5, 2011

Say What?

I promised I would update you guys! I had another appointment at IU today for one of my biweekly check ups, a growth scan, and fetal echo. I learned some new things and reiterated some of the old. First and foremost, his growth scan went beautifully. Everything with the exception of his heart still looks perfect. They even estimate that he weighs a whooping 3lbs 8oz right now and it even appears that his growth may have caught up a bit! I was most pleased with that prospect, even if it is just a mere estimate. We got some super cute pictures too. He definitely has the same nose little Riley does, which made me tear up. His little profile and chubby cheeks were the sweetest little things. Of course he has 9 tons of placenta mushed up against his little face so the tech couldn't turn the 4D on. I was a little bummed about that, but we wouldn't have seen much anyways because stinker had his hands right up in his face the whole time. So we either saw hand or placenta. Boo. Maybe next time, eh Lukas? Mama wants to see that sweet little face of yours! P.S. - Here's a little belly picture for you all from today. I apologize its on my phone though so the quality isn't exactly stellar =(

(sorry for the dirtiness of my mirror - yikes)
his nose and upper lip - that big blob next to his nose is my placenta (told you he is smooshed!)
The echo also went well. This time we saw Dr. Farrah, who was incredibly kind and informative as well. She really took a lot of time to ensure every question I had was answered and each question with met with an incredibly knowledgeable response. She even explained this incredibly amazing mission trip she is taking along with Lukas' very own Dr. Turrentine to Amman, Jordan where they are going to operate on the tiny hearts of 12 very deserving little ones who wouldn't have the means to receive these operations any other way. Pretty cool, huh?

love this special little heart =)
In any event, the cardiologists are still very confident in their diagnosis of truncus type I. I did learn that only about 40% of babies with truncus get the opportunity to go home for any amount of time before their operations. In some ways I had expected that, but it still tugged at my heart a bit to hear. Dr. Farrah told me that one of the biggest concerns in babies with truncus is that common truncal valve because this will eventually become his aortic valve. In a normal, healthy human heart it is a tricuspid valve, meaning it has three leaflets. However children with truncus can have up to 6 leaflets with some abnormalities of the valve itself. This of course creates the concern that the valve won't function as it should. Dr. Farrah said they can tell somewhat by echo if the valve is narrowed or leaking by taking a peek at the outflow from that common valve. She did this today and noticed only a small amount of backflow and very minimal narrowing, which is good. The best news though? She got a perfect look directly on top of Lukas' truncal valve. It only has 3 leaflets! Woo hoo! Now, they won't be able to get an accurate picture of how that valve looks and functions until after he is born though. But for now that is awesome news. You could clearly see each of the three leaflets and watch them move. Amazing stuff indeed. My mother-in-law also got to go with me and witness everything too, which I think she enjoyed =) 

The end of the appointment was a little interesting if I may say so myself. You see, I was under the impression I would have non-stress tests at each appointment starting at 32 weeks. Clearly I was wrong in this assumption. I have to have them twice a week until I deliver. TWICE A WEEK! What? That means sometimes I will grace IU's campus up to three times in one week alone depending on the dates of my appointments/growth scans/echos. I have so many appointment cards in my purse its crazy! Everyday is an adventure, I tell you.

All in all it was a good appointment, even with the little twist there at the end. On a totally unrelated note, I am so sad for our Butler Bulldogs! I wish they could have brought home the W, but they had an amazing season and I am still so proud of them. My big brother is a Butler grad, so that school will always have a special place in my heart =)

Have a happy Tuesday friends and please keep a-prayin' for our sweet boy!
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Monday, April 4, 2011

Holland Has Tulips.

I know I'm awful and didn't update Friday with a new belly picture. I wasn't feeling so good over the weekend so I attempted to get some rest. I promise to update with some new pictures of my little fella tomorrow after my appointment though. Maybe a belly picture too. Promise! 

Over the weekend I met a new heart friend whom has a little boy with truncus as well. She shared her story with me and answered some of my questions, which I deeply appreciated. She also sent me a wonderful poem. I had heard bits and pieces of it before, but never the whole thing. It was written by Emily Perl Kingsley and it's called Welcome to Holland. The poem was actually written to describe the experience of raising a child with a disability and while I in no way, shape, or form see truncus or any other CHD as a disability, it really is a beautiful poem and very descriptive of how life sometimes feels knowing what we know now.  Here is the poem for your enjoyment:

Welcome to Holland by Emily Perl Kingsley

"When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

So maybe this trip to motherhood wasn't exactly the the Italy I had planned, but its still a beautiful place. Even if was going to be my third trip to Italy, I desperately wanted to go there again. I wanted to experience that world for a third time, but plans sometimes change. I wasn't taken to a wretched, awful place at all. And I have met a slew of people I never would have had the pleasure to know before now. I was one of those 1 in 100 that get a detour and an unexpected change in flight plans. You know what though? Even if this isn't Italy, it is still full of beauty and wonderment. 

And the truth is, I will probably always mourn that loss of the journey I didn't get to take for a third time. It is a big loss, just like the poem says. But that doesn't mean I don't love or enjoy where I am now; in this different place. I am still taking it all in and admiring the scenery and joy that abounds. Just because this is Holland and not Italy doesn't mean I can't stop to admire those windwills, tulips, and Rembrandts. And that's exactly what I plan on doing.

Even though I wasn't feeling good this weekend, we still had a good one. The weather outside yesterday was perfect. It was warm and sunny and it was like the perfect little drop of sunshine fell right here in our backyard. And believe me the boys soaked it up. They played outside on their swingset and with their bubbles and they ran and laughed and had fun. So hopefully the winter cold won't find its way in our neck of the woods again and maybe more of these joyous outdoor adventures can finally take place. 

And Riley's spring break is over now, so he is way excited to go back to school today =)

Happy Monday friends and I hope your weekend was beautiful and filled with fun! And please say a prayer for our boy tomorrow, as we have another growth scan and fetal echo. 

P.S. - Sorry for the lack of pictures in this post. I promise lots and lots tomorrow when I update after my appointment!

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