A few times since Lukas' birth and even beforehand, we were sent questions from others about his diagnosis. Probably the most popular question I have been asked is whether Lukas has DiGeorge Syndrome. I realized that I have never answered this here so I thought I would now.
Lukas does not have DiGeorge. He had a genetic probe after his birth that was finalized just mere days before his operation (although we received the initial FISH results within a few days). Those results showed no q22 deletion (aka DiGeorge Syndrome). This is significant for a number of reasons. DiGeorge and truncus are often comorbid conditions, occurring in about 33.3% of children with a diagnosis of truncus. This is a significant enough finding that we were offered an amnio when we received his official diagnosis. Jonathan and I thought over it carefully and we decided against it. We knew he would be tested at birth anyway and the risk just was not worth it to us. The results of that amnio would not have changed anything in my care or his at the time, so we just thought it would be best to avoid the potential complications surrounding amnio (even though they are small).
The second question we have been asked most frequently is whether Lukas had a partial repair or a full repair. He had a complete repair done on June 20th. The operation which was performed on him is called the Rastelli. I have heard of some surgeons doing partial repairs or "temporary" repairs, but this was not the case for Lukas. Due to his decline before his operation, there was no time for a temporary repair. In fact, a temporary repair was never even discussed with us before or after his birth. The plan all along was to do a full repair once symptoms of heart failure became evident. This is how Dr. Turrentine does things, but every surgeon operates based on a different agenda and timeline. Some like to wait until the child is a particular age regardless of anything else, some surgeons like to perform them immediately after birth. It really just depends on the individual surgeon. The reason Lukas' operation was not performed immediately after birth is because they wanted to allow time for Lukas' heart rate, respirations, and vital signs to stabilize. They also wanted him to gain as much weight as possible before his operation.
These next few things are not so much questions we have received about Lukas or Lukas' care, but rather just general thoughts I believe are worth sharing.
One thing that we did do for Lukas before he was discharged was sign him up for a lifelong study. Basically what this program does is follow him for the remainder of his life unless we or he opts out of the program. His information is collected and stored in a "bank" that other congenital heart surgeons have access to. This study allows congenital heart surgeons to examine the operations performed by other surgeons in an attempt to develop safer, more successful procedures with a prolonged increase in the time between each subsequent operation. Its a great program. We all know that operations vary from surgeon to surgeon and state to state. Different medical professionals do things differently and that is totally fine. This program just allows surgeons from around the world to examine the procedures with the highest rates of success and helps them to educate others about safer, more effective means of operating on these little warriors.
Also, the Contegra graft that Lukas currently has does not have final FDA approval. This might sound scary, but every medical procedure that is FDA approved has to go through these steps. We had to sign several consent forms in order for the Contegra graft to be used and have Lukas' information be part of the study and shared with the FDA about its effectiveness. It has the initial FDA approval, just not final FDA approval. As a result, only select surgeons in the United States are allowed to use them. Dr. Turrentine and his colleague Dr. Brown just happen to be two of those surgeons selected to use them here in the state of Indiana. I watched a video of a truncus repair before Lukas was discharged that used an entirely different type of conduit and valve and even the repair itself was done completely different. If you are curious, always ask your surgeon how they perform the repairs and what type(s) of conduits/valves they use. Our medical team told us the two most commonly used valves are bovine (which is what Lukas has) and donor.
Lastly, we were told after Lukas' operation that his heart is slightly enlarged due to it being overworked in the two weeks before his operation. Dr. Turrentine told Jonathan and I that the walls of his heart were slightly thickened. He was not overly concerned with this finding, but Lukas will continue to be monitored to ensure it is not affecting the performance of his conduit and valve. Additionally, we were told prenatally not to be surprised if Lukas' oxygen saturations were in the high 70-low 80 range. As you know from having read on the blog, up until a few days before Lukas' operation his saturations were always in the high 90s, even though his "target" was only to stay above 75%. His doctors were both happy and concerned with his high numbers for this one reason: higher saturations meant his lungs were receiving more blood, thus working harder than they probably should be. This could have been a contributing factor as to why Lukas went into respiratory distress two days before his operation.
I apologize that I have never directly addressed some of these questions or shared some of my thoughts on the additional topics mentioned. Sometimes that stuff just slips my mind.
Happy Thursday friends!
P.S. - Please pray for one of Lukas' heart friends, sweet little Rebekah. She needs to have another heart surgery, probably sometime before Christmas. You can read about what the operation entails here.
Thursday, October 13, 2011
Friday, October 7, 2011
Goodbye, Tonsils.
Please forgive me for not having updated since Hayden's surgery last week. Its been a bit hectic.
In any event, our boy had his operation last Friday. Everything went very well (thank goodness), but he did have to stay overnight. They did have to use the laser to trim down some excessive voice box tissue and when Hayden was in recovery his breathing was quite "noisy." They paged Dr. Matt and called in a respiratory therapist. Because this procedure can sometimes cause burns and other airway complications, they decided to keep him just to be on the safe side.
He had some difficulty in the hours immediately following his operation, but after a dose of pain medication and a few good hours of sleep our boy started eating and drinking and he hasn't looked back since. Now you'd never even know anything had occurred. I'm not going to lie though. His voice is still raspy and I couldn't be happier. I love that little raspy voice. Dr. Matt actually said when he was scoping Hayden he noticed he had grown some "nodules" on his vocal cords. These aren't a cause for concern or anything like that. They just simply form from "overuse" (aka screaming and talking way too loud) and he will eventually grow into it. No biggie. Hayden now breathes out of his nose and the snoring has ceased, which is most excellent indeed. He's a trooper that boy. He was bummed about having to remain out of school this week, but he should be able to get back next week.
Lukas also saw the pediatrician Tuesday for his 4-month check up. They couldn't believe how much he had grown and changed from his 2-month check up. And grow he did. Lukas weighed in at 12lbs 12oz, which is the 35th percentile for his age. This is a huge jump considering how at 2-months he was only in the 8th percentile (at 9lbs 50z). He's in the 50th percentile for height and 65th percentile for head circumference (that's a family thing - hehe). He's growing so wonderfully! This is a big, huge blessing. He's giggling like mad at everything and he's found his feet. He will grab them and carefully examine them in any and every way possible.
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| before - waiting to be called back |
In any event, our boy had his operation last Friday. Everything went very well (thank goodness), but he did have to stay overnight. They did have to use the laser to trim down some excessive voice box tissue and when Hayden was in recovery his breathing was quite "noisy." They paged Dr. Matt and called in a respiratory therapist. Because this procedure can sometimes cause burns and other airway complications, they decided to keep him just to be on the safe side.
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| getting the party started - he wasn't too happy about all this |
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| eh, nothing some little animals and stickers can't cure |
He had some difficulty in the hours immediately following his operation, but after a dose of pain medication and a few good hours of sleep our boy started eating and drinking and he hasn't looked back since. Now you'd never even know anything had occurred. I'm not going to lie though. His voice is still raspy and I couldn't be happier. I love that little raspy voice. Dr. Matt actually said when he was scoping Hayden he noticed he had grown some "nodules" on his vocal cords. These aren't a cause for concern or anything like that. They just simply form from "overuse" (aka screaming and talking way too loud) and he will eventually grow into it. No biggie. Hayden now breathes out of his nose and the snoring has ceased, which is most excellent indeed. He's a trooper that boy. He was bummed about having to remain out of school this week, but he should be able to get back next week.
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| in recovery - not feeling so hot |
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| after some sleep and pain medicine |
Lukas also saw the pediatrician Tuesday for his 4-month check up. They couldn't believe how much he had grown and changed from his 2-month check up. And grow he did. Lukas weighed in at 12lbs 12oz, which is the 35th percentile for his age. This is a huge jump considering how at 2-months he was only in the 8th percentile (at 9lbs 50z). He's in the 50th percentile for height and 65th percentile for head circumference (that's a family thing - hehe). He's growing so wonderfully! This is a big, huge blessing. He's giggling like mad at everything and he's found his feet. He will grab them and carefully examine them in any and every way possible.
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| golly we love this boy
All in all its been a pretty good week. Our little tonsil-less boy is at the zoo today with Grandma, which means I get my little Lukas and my big Riley all to myself. On that note, I think we might go and enjoy the sunshine and warm temperatures before they fade away.
Happy Friday friends. Hope you all have a beautiful and safe weekend!
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Thursday, September 29, 2011
Rainy Days and Thursdays.
It was rainy yesterday. And cold. It made for a nice day of sitting inside and drinking hot chocolate with my boys. Riley was supposed to have soccer practice, but it was canceled due to standing water on the fields. The NYSL wanted to "preserve" the integrity of the fields, so they wouldn't permit players to come to the fields with their cleats on to practice. Today is a little nicer, thank goodness. At least its sunny and its supposed to be the warmest day for the remainder of the week. I tell you what, all of this rain could have come over the summer when the temperatures were sweltering and the grass was dying. But I digress.
We are t-minus 1 day from surgery now. We should receive a call from the OR sometime today letting us know what time to be there. From what we understand the time slots go by age. Basically, the younger the child the earlier they get in. So hopefully Hayden won't have to wait too long in the morning since he won't be able to eat or drink after midnight. While we are at Riley, we are planning on making a quick trip up to the NICU to visit with some of our favorite nurses who are going to be working. I can't wait for them to see how much Lukas has grown in the three months since his operation (holy cow - can you believe that was really 3 months ago already?). Time sure does fly.
So my task for the day is to go and get Hayden some comfy pajamas to wear to and from the hospital. Not that he doesn't have a million pairs, but we wanted to get him something extra comfortable since he will come right home and lay down. We don't want him being uncomfortable for the ride home and we don't want to have to pester him when we get here to put "comfy" clothes on. Maybe some Spiderman or Star Wars pajamas - something that will maybe cheer him up afterwards cause I'm sure he won't be a happy camper.
Happy Thursday friends!
P.S. - Baby Scarlet is doing wonderful and they are hopeful that she will be extubated tomorrow! That's just wonderful! She will be able to be discharged in two weeks! Go Scarlet!! Aren't these sweet little heart warriors just amazing?
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| hiding under the bed playing with Chloe (our cat) |
So my task for the day is to go and get Hayden some comfy pajamas to wear to and from the hospital. Not that he doesn't have a million pairs, but we wanted to get him something extra comfortable since he will come right home and lay down. We don't want him being uncomfortable for the ride home and we don't want to have to pester him when we get here to put "comfy" clothes on. Maybe some Spiderman or Star Wars pajamas - something that will maybe cheer him up afterwards cause I'm sure he won't be a happy camper.
Happy Thursday friends!
P.S. - Baby Scarlet is doing wonderful and they are hopeful that she will be extubated tomorrow! That's just wonderful! She will be able to be discharged in two weeks! Go Scarlet!! Aren't these sweet little heart warriors just amazing?
Tuesday, September 27, 2011
Tuesday Quicky
In the spirit of sharing I thought I'd do a quick Lukas spam post on this rainy, cold Tuesday. I've not been overly diligent about sharing pictures of the boy for whom this blog was created, so here's a few of my faves (via Instagram - I love that app). Enjoy.
Do you remember the shoes in the middle there? Those are just one pair of the teeny, tiny soft soled crib shoes I made for my boy before he came into the world. I'm planning on making more since the weather is cooling off and its the perfect time to sport little shoes rather than just socks.
Happy Tuesday!
P.S. - Baby Scarlet made it through her heart transplant yesterday and she's doing just great! Thank you for all your prayers for her!
Do you remember the shoes in the middle there? Those are just one pair of the teeny, tiny soft soled crib shoes I made for my boy before he came into the world. I'm planning on making more since the weather is cooling off and its the perfect time to sport little shoes rather than just socks.
Happy Tuesday!
P.S. - Baby Scarlet made it through her heart transplant yesterday and she's doing just great! Thank you for all your prayers for her!
Monday, September 26, 2011
Lazy Days of Fall.
As Friday's surgery date draws closer, I find myself tiding up and preparing. We are stocking up on some supplies (aka lots of fluids we know Hayden loves to drink) and some necessities so that we don't have to venture out over the weekend. This weekend was not much different. We pretty much hunkered inside and steered clear of the rainy coolness of the fall weather here in Indy.
Staying indoors opened Pandora's box for my brain though, so I guess the weekend wasn't totally a bust. I painted my nails a gray shade since I have a newfound love for all things gray recently. The shade is called "Concrete Catwalk." Pretty catchy, huh?
Let's see, what else. Jonathan and I also talked about little "chores" the boys could do around the house. Just things we want them to get used to doing, like getting dressed, brushing their teeth, and picking up their toys. We also decided to give Riley and Hayden each an extra "special" job. Riley gets to feed the cats and Hayden gets to help us make the beds. To drum up their excitement over doing these things, I created a little chore chart for them. I wanted it to be kiddo friendly, so I created four simple tasks (with pictures) that they can check off each day when they've done their chore.
It was a big hit! The boys loved it and they ran around like mad trying to get their "chores" done so that they could check off their little circle for the evening. To make it easy I printed them on some cardstock and stuck them in 8.5"x11" frames that I happened to have laying around. That way the boys can make their check marks with a dry erase marker and we can wipe it off and start again fresh the next week. It's working out great so far. Now I just need to decide where to hang them. Any suggestions? I thought about maybe putting some magnetic strips on the back of the frames and hanging them on the refrigerator or using some of those 3M Command Strips to hang them on the wall in the laundry room. Decisions, decisions.
I'm also working on a little game for each of the boys. Something little to carry around in the car with us for when we need something to keep us preoccupied. I'll post pictures when I'm done. It's a memory game, but it also will help them remember their colors too. I'm also making them some printables that I am going to laminate to help them write their name. Basically it will be traceable, but with it being laminated we will be able to work on it over and over again without going through a million sheets of paper.
How about some Lukas news? Well, he's doing just great. He's getting so big and he's just so handsome. He has the widest, biggest smile and a giggle that could absolutely, positively melt your heart. He's such a little miracle and we love him so, so much. Riley has even finally started wanting to be near him. He will kiss him on the forehead and tickle his feet. And his baby voice that he talks to him in. Oh. My. Gosh. Swoon. I'll try to record it sometime so you all can hear it. It's precious. Just precious.
Well, happy Monday friends. Hope it's been a good one.
P.S. - For those of you wanting an update on baby Scarlet, her family received the call last evening. She is getting her new heart and a new chance at life. Scarlet is in surgery right now, so please pray for her and her family. Also, please take a moment to say a few kind words for the donor family who is going through grief today I cannot even imagine. Keep them both in your thoughts today friends.
Staying indoors opened Pandora's box for my brain though, so I guess the weekend wasn't totally a bust. I painted my nails a gray shade since I have a newfound love for all things gray recently. The shade is called "Concrete Catwalk." Pretty catchy, huh?
Let's see, what else. Jonathan and I also talked about little "chores" the boys could do around the house. Just things we want them to get used to doing, like getting dressed, brushing their teeth, and picking up their toys. We also decided to give Riley and Hayden each an extra "special" job. Riley gets to feed the cats and Hayden gets to help us make the beds. To drum up their excitement over doing these things, I created a little chore chart for them. I wanted it to be kiddo friendly, so I created four simple tasks (with pictures) that they can check off each day when they've done their chore.
I'm also working on a little game for each of the boys. Something little to carry around in the car with us for when we need something to keep us preoccupied. I'll post pictures when I'm done. It's a memory game, but it also will help them remember their colors too. I'm also making them some printables that I am going to laminate to help them write their name. Basically it will be traceable, but with it being laminated we will be able to work on it over and over again without going through a million sheets of paper.
How about some Lukas news? Well, he's doing just great. He's getting so big and he's just so handsome. He has the widest, biggest smile and a giggle that could absolutely, positively melt your heart. He's such a little miracle and we love him so, so much. Riley has even finally started wanting to be near him. He will kiss him on the forehead and tickle his feet. And his baby voice that he talks to him in. Oh. My. Gosh. Swoon. I'll try to record it sometime so you all can hear it. It's precious. Just precious.
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| a little happy, smiley boy spam for you (please excuse the blurriness - he was moving and it was on my phone) |
P.S. - For those of you wanting an update on baby Scarlet, her family received the call last evening. She is getting her new heart and a new chance at life. Scarlet is in surgery right now, so please pray for her and her family. Also, please take a moment to say a few kind words for the donor family who is going through grief today I cannot even imagine. Keep them both in your thoughts today friends.
Friday, September 23, 2011
Run Fun and Operation.
Everyone have a good weekend? I know I sure did. I mentioned a couple posts back that I was given the immense honor of photographing the 33rd Annual Dick Lugar Community Run, Walk, and Health Fair this past Saturday. It went beautiful. The weather was perfect and the event went off without a hitch. I was honored to meet the new President of Butler University, James Danko, and his wife, Bethanie, who were just incredibly kind people. She talked with me at great length about Lukas' journey and we talked about a new endeavor that I am getting underway. She was so incredible and offered her assistance in any way possible. That's huge. Beyond huge. They are both so lovely and we are so honored to have them at Butler (I'm a huge Butler fan because its my big brother's alma mater).
The run itself is hosted every year on the Butler University campus. If you haven't been there, you are missing out. Its such a beautiful campus. Year after year my appreciation for that campus has never been lost. The Health Fair and award ceremony was housed in Butler's Health and Recreation Complex, which is a great facility for prompting health and wellness for Butler students and staff. It was just an incredible day and I was so lucky to have been able to share it with such incredible people. Anywho, here are a few shots from the day that I consider to be my favorites.
The run itself is hosted every year on the Butler University campus. If you haven't been there, you are missing out. Its such a beautiful campus. Year after year my appreciation for that campus has never been lost. The Health Fair and award ceremony was housed in Butler's Health and Recreation Complex, which is a great facility for prompting health and wellness for Butler students and staff. It was just an incredible day and I was so lucky to have been able to share it with such incredible people. Anywho, here are a few shots from the day that I consider to be my favorites.
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| the first youngster to cross the finish line |
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| love this photo |
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| crossing the finish line |
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| starting the races (new Butler University President James Danko is on the right) |
So that's the good news. It was a blast and I can't wait for some more of the exciting things I have coming up! More on that later. Unfortunately, I also have a bit of bad news to share. That's where the second part of the title comes in. More surgery, different child (aka Hayden). When he went to his 2.5 year check up with our pediatrician, Dr. McAteer asked if I had any concerns. Not thinking anything of it I made a joke about how Hayden has a man snore. As in, its incredibly loud - like a grown man. With that in mind, she looked in his throat and shook her head in agreeance with what she knew she would find. His tonsils were enlarged. So enlarged in fact that she could not even see the back of his throat. She made an appointment with an ENT down at Riley and come Tuesday we got the word. Hayden needs to have his tonsils and adenoids removed, tubes placed, and some excessive tissue trimmed from his voice box. During Dr. Matt's (the ENT) assessment, he noted that Hayden's eardrums were not rebounding because he was retaining fluid behind them. He had a hearing test done and let's just say the results were less than stellar, but Dr. Matt is pretty confident that will improve once the fluid is drained and the tubes are placed.
I won't lie, I'm not looking forward to it at all. He's such a happy-go-lucky boy all the time and the thought of him being in pain saddens me terribly. And likely his sweet, raspy man voice will be gone after the operation. I've always adored that raspy voice, but it turns out all along it was a symptom of all these other things. That's going to take some getting used to. This is all slated to take place next Friday, the 30th. I don't know the times yet, as the OR will call me the night before with the time and his instructions. I'll be sure to keep you all posted. Here's to hoping things go smoothly and this is the last procedure for our little gang for a while.
Happy weekend friends. Anyone doing anything fun?
Wednesday, September 14, 2011
From the Heart.
A few days ago I saw a message in a heart parents group I am a part of. A lovely woman is who is expecting her first heart baby within a few weeks reached out to ask for advice on the road ahead. It was a really thought provoking question. I've thought about this very thing many times, but its never something I have really sat down and genuinely collected my thoughts on. I thought back to when I first found out about Lukas' heart defect; the advice, guidance, and support I received from others. From my family, friends, doctors, and even complete strangers. I thought back on the moments that struck me the deepest and the actions that defined our path. I looked back on our stay in the hospital and things that I knew I should have done differently. I searched for words and phrases that really struck a cord with me.
What I came up with was this. The CHD journey is not something you can really sugar coat. Its raw, its deep, and it affects the very core of you. Its impossible to look a heart parent in the eye and tell them that this journey is going to be easy because truthfully, its not. Its not easy at all, but it is worth it. There are tough moments. There are times you become so numb you wonder if you can keep going. You wonder if you have the strength and perseverance to make it through this. Rest assured that you do. When tough moments surface, you somehow find that strength. You find that will deep in your bones that makes you want to fight until the very end. You draw strength from wanting your little one to get better, to come home, and to live a vibrant life that there is nothing you won't do to see that goal accomplished.
Its hard watching your little one struggle. Its devastating to stand by and know you are helpless to do anything to stop it other than being there to comfort and soothe them in their time of need. As a parent, you never want your children to suffer. You never want them to be scared and you never want them to endure hard times. This was probably the most striking lesson for me as a new heart parent myself. As Lukas declined before his operation, I had to stand by knowing everything was out of my hands. I could cry and I could plead with his doctors and surgeons to help him get better. I could plead with God and I could be there to hold him, touch him, kiss him, and whisper in his ear, but beyond that I was powerless. Its one of the hardest, deepest cutting feelings in this world. In these situations you have to recognize your own limits. I tried to stay awake 24/7 to be by Lukas' bedside. I somehow thought that with me being there and wearing my own body down that I was making a difference. I wasn't. I cried hysterically the first time the NICU staff convinced me to leave and get some rest. I had nurses and doctors constantly telling me that I needed to take care of myself too if I wanted to be there and be strong for him. They were 100% right. At the time I felt like I was being picked on because I wanted to be there with my baby. Looking back now, I should have absorbed that advice sooner. It wasn't until I was near the breaking point of my body that I finally heeded their words of wisdom. While you always want to be there and you always want to remain vigil of your little one, you need to take care of yourself too. Lukas' condition wasn't going to be any better or worse whether I was there or not. I spent every moment I could with him, but I had to sleep too. If I wanted my mind to be sharp and clear, I needed to sleep. I needed to eat. And occasionally I needed to leave the confines of his hospital room, even if only for a few moments. It clears your head and opens your perspective. Sometimes that very element is needed on this journey.
If surgery is required, especially open heart surgery, rest assured that first time you see them its going to take your breath away. No matter how many pictures you see of other children or how prepared you think you are, nothing prepares you for that being your child. Our beloved pediatric cardiologist, Dr. Farrell, echoed that same sentiment before Lukas' arrival. It is good to feel prepared. Its good to know what to expect because it does lessen that blow to some extent. If you know they are going to be hooked up to lots of machines and have lots of IV lines, tubes, and monitors, that knife cuts just a little less deep. Nonetheless, it is still your child. Its heart wrenching to see your own flesh and blood laying there receiving a level of care most people will probably never know in a lifetime. And you hope they never do. As hard as those initial moments are, remember its a benchmark. Its a milestone and everyday things come off. IV bags, lines, monitors, and tubes disappear as a signal of improvement. Jonathan said something on the day of Lukas' operation that has always stuck with me. He looked me in the eye as we said "see you later" to Lukas in the OR and said "today we get to start watching him get better, not worse." I cannot tell you how true this statement is. Knowing they are on the road to recovery and knowing their lives have taken a positive turn makes it just a little easier to see them in those initial hours after an operation. I remember comparing Lukas' heart monitor before and after his operation. As he got better I remember his respirations being within a normal range. I remember his heart beat not being so erratic. I took comfort in these things. I took them as a sign of his improvement. As far as I was concerned, the day of his operation was the first day of his new life. He did things after his operation he had never done before. He smiled. He cooed. He stayed awake through a feeding. I cannot tell you how remarkable those very simple things felt. They meant he was getting better. Thinking of open heart surgery is a scary prospect. Like any medical procedure, things can go wrong. Your mind typically drifts that direction when you get news like this and almost immediately. You always think of the bad before you think of good. Its a pretty natural human reaction. My advice on that subject is this. Be cognizant of the bad. Be aware that things can go wrong, but don't dwell on it. Don't focus all of your energy on the bad. Instead, devote it to the good. Look at success rates, talk to other parents whose children have been through that operation. Find a surgeon who feels right. Ask questions. Ask anything that helps to ease your fears no matter how minute it feels. Whenever the bad creeps in, replace it with the good. Never let that negativity or fear linger. You just have to remember in this situation, it is what it is. Good, bad, or indifferent, you're here. Certain bridges have to be crossed in order for improvement to occur. Embrace these bridges. Embrace these steps and welcome them, for its the pathway to improvement. Its the starting line of a better life. An incredible life. Have faith and hold onto it. Never stop believing and never lose that faith.
Some of the most powerful memories I have of Lukas' journey are the photographs I took while in the hospital. Both before, during, and after Lukas' operation. Not a day went by that I didn't photograph some aspect of his life and I'm so glad I did. I treasure those photographs. So much so I couldn't even delete them from my compact flash card even after I had uploaded them to my computer and archived them. I actually "retired" that CF card. Its kept in a safe place and it will never be used again. It might sound strange to say that I hold so close to my heart photos when my son lay in a hospital, but I do. Its a part of our history. His history. I look back on those photos and they evoke such strong emotions. They are a reminder of where our boy was and how far he has come. Those photos are so powerful that they can tell Lukas' entire story without me having to say a single word. There will be days you don't think you will want to remember, but I promise you will. Photograph every second. Let those photos tell a story. A beautiful story. There are moments forever forged in those photos that I never thought I would want to remember, but I'm so glad I paused long enough to capture them. You will be too, I promise. You will look back on those photos with a fondness and appreciation I don't even have the words to explain.
I've said it a million times since Lukas' journey began and I will say it again. The road is hard. There are lots of bumps and lots of rough patches, but what lies on the other side is pretty miraculous. Those who don't know what Lukas has been through look at me with this profound disbelief when I tell his story. Unless you see his scar or witnessed some aspect of his struggle, you'd never guess his first months of life were not "typical." Bad things happen and you never really know what to fully expect because everyone's CHD journey is a little different. I don't think any two people ever really walk the exact same road with this stuff. But you live for those good days. You bask in knowing that right now, nothing needs to be changed. You learn to appreciate those days. You learn to live one day at a time and appreciate that day for everything it contains. You'll gain a new found sense of the world around you. You'll be forever changed, but in a good way. You will be stronger and you will leave with a little more than you came with.
That's my advice for any parent finding out about a heart defect, illness or hardship you know your little ones will endure. They are words from the heart.
Happy Hump Day friends =) 'Til next time...
What I came up with was this. The CHD journey is not something you can really sugar coat. Its raw, its deep, and it affects the very core of you. Its impossible to look a heart parent in the eye and tell them that this journey is going to be easy because truthfully, its not. Its not easy at all, but it is worth it. There are tough moments. There are times you become so numb you wonder if you can keep going. You wonder if you have the strength and perseverance to make it through this. Rest assured that you do. When tough moments surface, you somehow find that strength. You find that will deep in your bones that makes you want to fight until the very end. You draw strength from wanting your little one to get better, to come home, and to live a vibrant life that there is nothing you won't do to see that goal accomplished.
Its hard watching your little one struggle. Its devastating to stand by and know you are helpless to do anything to stop it other than being there to comfort and soothe them in their time of need. As a parent, you never want your children to suffer. You never want them to be scared and you never want them to endure hard times. This was probably the most striking lesson for me as a new heart parent myself. As Lukas declined before his operation, I had to stand by knowing everything was out of my hands. I could cry and I could plead with his doctors and surgeons to help him get better. I could plead with God and I could be there to hold him, touch him, kiss him, and whisper in his ear, but beyond that I was powerless. Its one of the hardest, deepest cutting feelings in this world. In these situations you have to recognize your own limits. I tried to stay awake 24/7 to be by Lukas' bedside. I somehow thought that with me being there and wearing my own body down that I was making a difference. I wasn't. I cried hysterically the first time the NICU staff convinced me to leave and get some rest. I had nurses and doctors constantly telling me that I needed to take care of myself too if I wanted to be there and be strong for him. They were 100% right. At the time I felt like I was being picked on because I wanted to be there with my baby. Looking back now, I should have absorbed that advice sooner. It wasn't until I was near the breaking point of my body that I finally heeded their words of wisdom. While you always want to be there and you always want to remain vigil of your little one, you need to take care of yourself too. Lukas' condition wasn't going to be any better or worse whether I was there or not. I spent every moment I could with him, but I had to sleep too. If I wanted my mind to be sharp and clear, I needed to sleep. I needed to eat. And occasionally I needed to leave the confines of his hospital room, even if only for a few moments. It clears your head and opens your perspective. Sometimes that very element is needed on this journey.
If surgery is required, especially open heart surgery, rest assured that first time you see them its going to take your breath away. No matter how many pictures you see of other children or how prepared you think you are, nothing prepares you for that being your child. Our beloved pediatric cardiologist, Dr. Farrell, echoed that same sentiment before Lukas' arrival. It is good to feel prepared. Its good to know what to expect because it does lessen that blow to some extent. If you know they are going to be hooked up to lots of machines and have lots of IV lines, tubes, and monitors, that knife cuts just a little less deep. Nonetheless, it is still your child. Its heart wrenching to see your own flesh and blood laying there receiving a level of care most people will probably never know in a lifetime. And you hope they never do. As hard as those initial moments are, remember its a benchmark. Its a milestone and everyday things come off. IV bags, lines, monitors, and tubes disappear as a signal of improvement. Jonathan said something on the day of Lukas' operation that has always stuck with me. He looked me in the eye as we said "see you later" to Lukas in the OR and said "today we get to start watching him get better, not worse." I cannot tell you how true this statement is. Knowing they are on the road to recovery and knowing their lives have taken a positive turn makes it just a little easier to see them in those initial hours after an operation. I remember comparing Lukas' heart monitor before and after his operation. As he got better I remember his respirations being within a normal range. I remember his heart beat not being so erratic. I took comfort in these things. I took them as a sign of his improvement. As far as I was concerned, the day of his operation was the first day of his new life. He did things after his operation he had never done before. He smiled. He cooed. He stayed awake through a feeding. I cannot tell you how remarkable those very simple things felt. They meant he was getting better. Thinking of open heart surgery is a scary prospect. Like any medical procedure, things can go wrong. Your mind typically drifts that direction when you get news like this and almost immediately. You always think of the bad before you think of good. Its a pretty natural human reaction. My advice on that subject is this. Be cognizant of the bad. Be aware that things can go wrong, but don't dwell on it. Don't focus all of your energy on the bad. Instead, devote it to the good. Look at success rates, talk to other parents whose children have been through that operation. Find a surgeon who feels right. Ask questions. Ask anything that helps to ease your fears no matter how minute it feels. Whenever the bad creeps in, replace it with the good. Never let that negativity or fear linger. You just have to remember in this situation, it is what it is. Good, bad, or indifferent, you're here. Certain bridges have to be crossed in order for improvement to occur. Embrace these bridges. Embrace these steps and welcome them, for its the pathway to improvement. Its the starting line of a better life. An incredible life. Have faith and hold onto it. Never stop believing and never lose that faith.
Some of the most powerful memories I have of Lukas' journey are the photographs I took while in the hospital. Both before, during, and after Lukas' operation. Not a day went by that I didn't photograph some aspect of his life and I'm so glad I did. I treasure those photographs. So much so I couldn't even delete them from my compact flash card even after I had uploaded them to my computer and archived them. I actually "retired" that CF card. Its kept in a safe place and it will never be used again. It might sound strange to say that I hold so close to my heart photos when my son lay in a hospital, but I do. Its a part of our history. His history. I look back on those photos and they evoke such strong emotions. They are a reminder of where our boy was and how far he has come. Those photos are so powerful that they can tell Lukas' entire story without me having to say a single word. There will be days you don't think you will want to remember, but I promise you will. Photograph every second. Let those photos tell a story. A beautiful story. There are moments forever forged in those photos that I never thought I would want to remember, but I'm so glad I paused long enough to capture them. You will be too, I promise. You will look back on those photos with a fondness and appreciation I don't even have the words to explain.
I've said it a million times since Lukas' journey began and I will say it again. The road is hard. There are lots of bumps and lots of rough patches, but what lies on the other side is pretty miraculous. Those who don't know what Lukas has been through look at me with this profound disbelief when I tell his story. Unless you see his scar or witnessed some aspect of his struggle, you'd never guess his first months of life were not "typical." Bad things happen and you never really know what to fully expect because everyone's CHD journey is a little different. I don't think any two people ever really walk the exact same road with this stuff. But you live for those good days. You bask in knowing that right now, nothing needs to be changed. You learn to appreciate those days. You learn to live one day at a time and appreciate that day for everything it contains. You'll gain a new found sense of the world around you. You'll be forever changed, but in a good way. You will be stronger and you will leave with a little more than you came with.
That's my advice for any parent finding out about a heart defect, illness or hardship you know your little ones will endure. They are words from the heart.
Happy Hump Day friends =) 'Til next time...
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