The Ugly Truth

Wow! So a few changes since you last heard from the Koetter clan. We have moved back to Jupiter, Florida (my hometown) for Jonathan's job and to be closer to family. I think I honestly thought that this move back to a place I am so familiar with was going to be a walk in the park. Boy was I wrong. Trying to switch all of Dalton's doctors and therapists has turned out to be quite the undertaking. We are literally at the Doctor or at therapy every single day of the week. I feel like I haven't had a second to breathe. To be honest, it hasn't been the easiest transition. We have had a few more medical issues to deal with and try and figure out. I think Jonathan and I felt we were out of the woods for a while but once again, Dalton likes to keep us guessing. We are dealing with a lot of GI issues, spinal problems, and some potential neurological concerns. On top of that, Dalton's upper respitory problems have only gotten worse, the breathing treatments are helping though! I think a lot of my frustration with the move has been due to the fact that when you leave a place (like Atlanta) with such a plethora of Doctors, you get accustomed to having choices for which specialists you see. Not here. There is one pediatric specialist and that's it! I am now realizing to get the quality of care that Dalton needs, some travel will need to take place. We also had an MRI completed last week. He had to be intebated because of the length of the scan. It was a lovely 8 hour day and Dalton kept those nurses wrapped around his 6 little fingers.

 Now, there are also plenty of good things that have come from this move! For one, we bought a new house! Yay! It is the perfect Florida house and we get to move in a couple of weeks. We also get to spend lots of time with my family, which has just been such a blessing. I feel like I have so much time to make up for, and they really do take a lot of the stress away from me. Whether its cooking us dinner on a busy night, cleaning the dishes and bottles, or keeping Dalton so we can do a weekly date night- they have been amazing.
Now that the update is done, the reason for this vent session. I want no pity, nothing telling me otherwise, these are my feelings and I am entitled to them.

Yes, things may appear easy and peachy on the outside. There is an ugly truth though, one that I am finally comfortable putting out there. I feel as if I am drowning. I feel as if I am not being the best mother I can be to Dalton because of the stress I am under from trying to "figure it all out". I am slowly coming to the realization that this is something that I truly need to put into God's hands. I feel like I have drifted in my faith. And that is a hard thing for me to admit. Yes, I thank God everyday for Dalton and what he is doing in his life. But, when it comes to being a great Mom, I question my decisions on a daily basis. Being the mother of a child with special needs is like nothing you can actually understand until you have walked in our shoes. Our life is different. We celebrate the tiny victories, things that may seem minor to most but monumental to us. I am not calling anyone elses problems rudimentary or invalid  but as I said before, this is just a vent session, and all I am saying is that it is just different. This experience has just shown me how truly different every single parenting experience is. All I can trust in is the fact that I am giving 110% every single day to get Dalton the best care I can. I think along with his care, I am realizing that I need to start to take care of myself if I am going to take the best care of him. I finally started talking to someone and I have high hopes that she will be able to help me create this balance in my life. When all you do every day is talk about the medical problems that your child has and is experiencing, you begin to lose sense of reality. Your mind just lives in a Doctors office, and its really hard to shake that and enter back into real life. That balance is so essential and I am really hoping to be able to achieve that. This has definitely been yet another journey for our little family. But honestly, when things get crazy, we just stare into the biggest baby blues and all our anxieties just seem to melt away.

A couple recent pictures and the best video ever!

Dalton has just discovered how to bounce in his exersaucer. And to say he loves it would be an understatement!

One day after PT, he was very pleased with his performance!

Dalton and Gigi at his first reggae show, he loves live music like his Mama.

A Prayer

Dear Heavenly Father,
How can I thank you? I don't think anything can show my gratitude for what you have given Jonathan and I. We are the luckiest people in the world and are eternally grateful for our little miracle. I never knew it was possible to love something as much as I love him, just as you loved your Son. Dalton is so lucky to have shown people what it means to have hope and to believe in you.
Lord, I was a faithful person before, but until I was faced with the darkest of days, I never truly knew You and Your power. You have shown us what it means to love and to put it all in Your hands. Losing control was hard for me at first but when I relaized that Your control was better than mine, I was glad to give in. I cannot thank you enough for the wisdom you have given all of Dalton's Doctors, nurses, and therapists. Lord, my only request from this point on is that our son know You, and become a man of faith.
I know his days are not promised to us, and we need to treasure every moment we have with him. I am at peace with the fact that when it is time for him to come home to You, we will meet again one day. Thank you for giving me this time though. I have never felt so lucky to just have time. I used to take days for granted, but not anymore. A day with Dalton can bring a smile to anyones face, even if he is being a fussy pants.
Lord, I pray for Dalton's upcoming surgeries, whenever they may be. I know you will be by his side every step of the way, just as you have been by ours throughout this journey. Every smile, giggle, squeal, and yes, even cry just reminds me that You have had Your hand in this each and every day. This was Your plan, and Dalton is supposed to be here. I truly believe God, that he is on this Earth to teach others, and even at 5 months old he is already showing so many people what faith can do. I pray You continue to allow him to do this as long as You see fit.
Watching him do what so many professionals said he could never do, probably brings us the most joy.You are the ulitmate physician and You have known what Dalton was and is capable of since You knit him together in my womb.
Father, I will continue to not ask "Why?" , but to just understand that You chose Jonathan and I for a reason. Some may think we are unlucky with the cards we have been dealt, but I know one thing, I feel honored to have been chosen by You to be Dalton's Mommy.
Lord, thank you for each and everyday.
Amen

Dalton medical update post surgery #2

I feel terrible for my lack of writing but we have been quite busy this last month. I wanted to share an update of Dalton's health and give everyone an idea of what exactly has been going on.
About a month ago we found out that Dalton had severe pulmonary hypertension. I thought that this only occurred in old people but apparently babies with heart conditions are very prone to it as well. Pulmonary hypertension means that the pressure in the lungs is elevated and more blood is being pumped into them then should be. The Doctor attributed this to Dalton's ASD (atrial septum defect) which is the hole in the center of his heart. They prescribed Dalton some diuretic to help the fluid even out and sent us home. 24 hours after we started the new medication Dalton started vomiting and having really bad diarrhea. We were sent to the emergency room just in case he needed fluids for dehydration. When we arrived to the ER they did an X Ray and saw that his heart was swollen from the amount of fluid around his heart. We were immediately transported to Egelston and admitted. They kept Dalton for 4 days and really stressed that they wanted to wait to do the ASD surgery for him to get bigger. He stopped getting sick while we were in the hospital and we thought it had passed.

 As soon as we got home the vomiting started all over again. I held off taking Dalton to the hospital because we had a weekly cardiologist appointment in the next few days. I took him to the cardiologist and the Doctor looked at me and asked what had taken me so long to bring him in. Apparently, I wasn't seeing the deteriorating signs in my own son. His breathing was so heavy, he was sweating while he was eating (when we could get him to eat), and he began to look sunken in.

We were sent back to Egelston and they were not letting us go until this was all sorted out. The night we arrived Dalton had stopped eating by mouth completely so they placed an NG tube (a feeding tube to his belly like had after his first surgery). The testing all began and the GI issues were only getting worse. The Doctors wanted to get the GI stuff resolved before they started looking at his heart. We got the diagnosis of cardiac failure when we arrived so it wasn't just his heart but something else was underlying. We had scheduled for him to go into the cath lab so we could get a better idea of what was going on in his heart. Basically they put you under and send a wire into the groin and up through the veins into the heart, they can get a very clear picture about what exactly is happening. The day we were scheduled Dalton started vomiting up blood. His stomach was just so raw from throwing up so much and it showed us there were a lot deeper issues than just a stomach bug. So they re scheduled the cath until we could get the GI stuff figured out because they did not want to put him under with those type of problems going on simultaneously. The GI tests showed us that Dalton's body cannot absorb fats or proteins. They also determined he had a cows milk allergy. He was immediately put on TPN's and lipids, basically a cocktail of fats and proteins that was getting pumped directly to his bloodstream.  He went into the cath lab and they determined what they had suspected. The hole in his heart was allowing 3 times the amount of blood to be pumped into his lungs. We had to wait for his body to start responding to the TPNs and lipids before we could even think about surgery because he was just so weak. We tried 3 different types of formulas and they were being continuously dripped into his stomach daily. After about 10 days the vomiting finally stopped. Now that the GI issues were starting to sort themselves out it was time to start thinking about his heart.

Most children with ASD's do not need surgery for at least a couple of years because it does not start to show symptoms until then. Dalton's hole was so large and the pulmonary hypertension was so bad that the cardiologists determined that this surgery was absolutely necessary. The surgeon came to evaluate Dalton (same one from his first surgery) and was not convinced. The surgeon basically asked me what the point was if he had such a poor genetic diagnosis. He said that he did not believe that Dalton would do well after the surgery and could not promise a positive outcome. It was at that moment that my inner Mommy mode came out and I told him that come hell or high water I was going to give my son a fighting chance, like we have done his whole life. I explained to him that we didn't know how he was going to do after his coarctation but he did great, and I had no doubt he would be successful after this one. I am convinced we have a fighter on our hands and I knew that Dalton would continue to prove his nay sayers wrong. After several meetings and lots of advocating on Jonathan and my part, the surgeon agreed. I don't want anyone to think that Jonathan and I are surgery happy but in our heart of hearts we believed that this is what Dalton needed to help him start to grow and have an easier life.

We knew that we wanted Dalton baptized by our pastor, Bryan, and we had to make it happen before the surgery. We had a lovely little service and Dalton was declared a child of God the night before his surgery. It was perfect. Obviously I had never imagined having the service in a hospital chapel with an IV pole beeping during prayer but you work with what you can. The next day Dalton went into surgery and 5 hours later emerged with the hole in his heart all patched up. He did great! We were kicked out of our room and into the ICU we went. We kind of felt like old pros back in the ICU. Seeing him with all his tubes and being restrained was not a shock to us this time, but still nothing you want your child to endure. This surgery was through his chest so he now has one scar on his side and one down the center of his chest. Once he woke up in the ICU he was starving. He drank a 4 oz bottle! This had never happened before, ever. Already we were seeing an improvement. You could tell his breathing was so much easier and he was no longer struggling when he fed. It was like a brand new child. He only had to be in the ICU for one night! We were moved back to our home away from home in the step down unit where Dalton just kept getting better and better. The nurses who had been taking care of him just kept telling us how much better he looked. Everyone could see it.

We brought him home 4 days after his surgery and we cannot even express how happy we have been. He is just getting bigger and stronger each and every day. Last night, Dalton took 12 oz of his new fancy formula. 12! We aren't even upset about the lack of sleep we are just so thankful he wants to eat so much. The smiles and laughter started back a few days ago and we can just tell he is so happy to be home with his Mommy and Daddy. Today, Dalton has been working his tail off to roll over. I'm blown away! He hasn't got it quite yet but I think it will come soon. All Jonathan and I keep telling Dalton is how proud we are. He is one of the strongest little boys I know and such a fighter. Thank you for all of your prayers and support during this time. We still have a long road ahead but with our faith we will prevail.

Easter Celebration

I wanted to share some pictures from Dalton's first Easter. We took him to an Easter egg hunt on Saturday to meet the bunny. Obviously no hunting happened, but a cute outfit and some great pictures did. We are enjoying our Sunday with just our little family. For some reason this Easter feels particularly blessed. We are so thankful everyday to have the time we do with our little miracle man. Jonathan and I have made sure to share with Dalton the true meaning of Easter through prayer and scripture. We pray that he will come to know the truth that Christ has died, Christ has risen and he shall come again. Enjoy the pictures. Happy Easter!

Loving being outside with his cutie outfit.

Trying to hold his Easter basket.

Little man

Basking in the glory of God.

Floating baby picture.

Aunt MR loves her baby.

Family photo op.

So we tried to stick him in his basket.

Then he got stuck.

We found it hilarious.

Love this sweet face.

The Bunny and the awkwardly holding fairy princess.

Coming downstairs to see if the bunny came.

He did!

Daddy showing Dalton his basket.

Handsome little Easter bunny.

And we are over the bonnet.

Ahh! Relaxing on Easter Sunday.

Love these toesies.

His infamous pout.

And photo shoot is....done.

Not Just A Baby With Trisomy 13

We have officially hit the 2 month mark! Woohoo! I'm still sane too, for the most part. Watching Dalton grow and change over the past 2 months has been such a blessing, one I was not sure I was going to get to have. He is absolutely beautiful and he teaches me something new everyday.

I have been very busy though filling out a daunting application for financial assistance for special needs children. I had to write down all of Dalton's diagnosis'. It quickly ripped me back to reality reading over all of the different evaluations from doctors and therapists. When I compiled the list of 20+ different things that they have diagnosed my baby with I stopped to think, where does the list go of what he CAN do, not what he CANNOT?

Where do I put that every morning Dalton likes to start his day by laughing hysterically with Mommy and Daddy? Where do I put that he can play a mean tune with his feet on his piano mat? Where do I put that he can pout with the best of them? Where do I put that his "serious face" means it is going to start smelling within the next 30 seconds? Where do I put that he likes to stare with his beautiful blue eyes at any moving fan or light? Where do I put that music can soothe him into the calmest state I have ever seen?

Where do those important things go on this 200 page application?

They don't.

The people that will assist us in funding some of Dalton's therapies and surgeries don't look at him as Dalton Craig, firstborn miracle baby of Kara and Jonathan. They look at him as a baby with severe partial Trisomy 13. And that's it.

I refuse to allow my son's diagnosis to define who he is or limit him in what he is capable of doing.

When people comment to me "Oh he looks so normal", it doesn't help the situation (to be honest I hate it when people say it!). If you would like to comment on how he looks then the word I like to use is, extraordinary. Because that's what he is. He isn't normal, nor will he ever be, because God made him extra special.

God forbid if something should happen to Dalton and he goes to the Heavenly Father sooner than later I would never want Dalton to be remembered as "the baby who had a genetic disorder", but as "a gift from above sent here to teach others more about the Lord".

This past week, we attended baby Porter's memorial service. It was a beautiful celebration of life. Not one part was centered on the fact that Porter had a terrible diagnosis, but it was centered on the fact that his parents, Seth and Jeannie, treasured every single minute of the 38 that they had with their precious boy. He knew nothing but love and was delivered back into the arms of our Father. Porter was not defined by his Trisomy 13 diagnosis and nor will I let Dalton be.

Dalton is not doubt a miracle but I want nothing more than for him to live a life that is full and meaningful to him. His life may look different than those around him but we will teach him that his life is just as precious as others. I pray daily that Dalton becomes a man of God working to honor the Father.

Thank you for your continued prayers and support. We appreciate and feel each and every one of them.

We love you!

I am posting a video of Dalton jamming on his new piano. He loves it!

A Moment

Finally found where Dalton hid my computer after he wrote that last post, so I do apologize for my lack of writing! These past few weeks have been full of learning opportunities, lots of tears, and even more smiles. Being a Mommy has been so rewarding and I finally feel like I am getting the hang of it. I am sure every Mom has those days where you feel like you are doing absolutely everything wrong. You question every decision you make for your child, questioning how it will affect them. Then of course after the decision is made you beat yourself up for not making the "right one".
Our days spent in Doctors offices and with therapists are actually the days I feel the most in control. Surprising, I know. I feel I have armed myself with the knowledge to be able to advocate for Dalton and his special needs. Along with my teaching degree I feel I have rightfully gone to medical school as well. I find myself rattling off medical terms like it is nobodies business and people stare at me in disbelief. I promised Dalton that no matter how confused or overwhelmed I got from day one, I would fight for him to get him what he needs. I am proud when a therapist looks at me and says "Wow. You're doing a great job working with him", or "I can't believe you have already applied for that federal funding- I'm impressed." I know that when Dalton can understand it all, he will appreciate all the work we have put in to being proactive rather than reactive (a lesson I learned from my parents).
Right now we are seeing physical and occupational therapists working on several different things. We are working on his neck and leg strength in his physical therapy. Also, we are trying to help his little feet turn out using several different exercises and infant massage to assist us. In occupational therapy we are working on his inconsistent suck. I have started nursing (somewhat) but he is not taking to it as easily as we would like. He is making great progress in his weight but is still behind where he should be, not for long though! The cardiologist thinks that we will be able to hold off on his next surgery for another year or two. The hole in his heart is pretty large and the left side is always going to be smaller than it should be. We are monitoring it closely to make sure he does not get too stressed out or is working too hard while trying to eat. He will see a developmental therapist as soon as he starts to show any sign of delay (prayers this never happens!), but we are 100% prepared for when that time does come.
So, I named this post "A Moment" for a reason. This moment I speak of was something so special to me that I even hesitated to share it with everyone. But I feel that all of you have been such a huge part of the journey and have seen such raw emotion from me already that I figured, why not?
Two days ago it was right after his 5 a.m. feeding and Jonathan had just left for work. I laid down in bed and put him in the bassinet right next to the bed, hoping for a few more minutes of sleep. I reached my hand in and started to stroke his hair to help soothe him back to sleep. The next thing I know he gently took my hand and brought my two fingers to his cheek and just held them there. We "held hands" for the next 15 minutes or so and for some reason I just wept. I cried out of joy for what we have overcome and out of fear for what is to come. I love him more than anything in this world and never thought a love this big could even exist. I know that Dalton is a true miracle and a gift from God, sent here to teach many people so many amazing things. He has already shown me how to be selfless, determined, and grateful for everything we are given. To see what he has done in other peoples lives brings me such pride that he is my son. That was a moment that I will treasure forever in my heart. There was just something so pure and innocent between the two of us in that moment. It is so hard to get caught up with all the appointments and running all over town to get him here and there. I often find myself so stressed out about all of the stuff we have to do that I sometimes forget to enjoy those moments. This is my reminder to myself and all the other parents out there- take those moments and breathe them in, embed them in your hearts, and never let them go.

**This is my special shout out Thank You to my amazing brother, Kyle, and my little sister from my sorority, Alison, for setting up a special non profit fund for Dalton's medical expenses- Click here to find out more!. All of the donations are going to help us provide Dalton with the appropriate medical care he needs. You are all so thoughtful and we are blown away by the generosity of everyone. We love you all!**

Also, check out the amazing photos that Christy Martin took of our little family, here. I'm kind of obsessed!

My fav!

A Day in the Life - by Dalton

I'm so excited, Mommy is letting me write her next post! Yay! She wanted me to share with everyone what our day looks like. It's kind of crazy, hence the lack of postings. I promise she is not sitting around eating bon-bons, we stay quite busy! I will take you through what one of our typical days looks like. Here it goes!

Rise and shine! Good morning everyone. I usually fall back asleep for an hour after my 6 a.m. feeding. Mommy tries to get as much done during that time as she can, but I really don't like her to do anything without me in her arms so I try and wake up as soon as I hear movement. The picture you see here is me in my rock and play. It is the only thing I will sleep in and I like Mommy to rock it back and forth all night long. She likes the arm workout, I think. 

Mommy loves to bring me into her big comfy bed after I wake up. We like to lay and she sings to me. I smile and she goes crazy for some reason. I like to play the game where I pop out my binky then she puts it back in, she falls for anything! Ha!

Mommy puts me in this bouncy seat while she takes these really fast showers. The louder I cry once she starts the fastest she goes. It's very entertaining to watch! 

The Today Show is my favorite. While Mommy blow dries her hair and gets ready I hang out in my Boppy and watch Matt Lauer. I like to keep up with the latest news around the world. No big deal!

After Mommy is done getting ready, she likes to get me dressed for the day. I am finally starting to grow out of some of my newborn clothes, Mommy is so excited! I like to wear as many outfits as possible in a day so I try and mess as many up as I can.

Ready to go by 9:00 a.m. Record time Mom! I love looking at my guitars while in my carseat. My 6 fingers are going to be so helpful when I start my band. Okay, I am off  to the Doctors!

Here I am at my cardiologist. They put a lot of stickies on me so they can see how my heart is doing. I am such a good boy and I lay really still,most of the time. 

Mommy carries this cup with her and the more she drinks the more awake she is. I wonder if she will share?

Why do they keep taking my clothes off? Here we are at our second appointment of the day. Today at the pediatrician I weighed 8 lbs 14 oz. I gained my weight back! Yay! I love going to see  Dr.Reisman. Mommy asks him lots of questions so we usually end up spending lots of time with him and he doesn't even get frustrated with her. 

Even after a long day of appointments we still come home and do my exercises. These exercises are things that Mommy has learned from the physical therapists. I really like it when we do tummy time the best. 

While Mommy tries to get stuff done around the house, I like to play in my swing. I love watching the mobile and listening to the fun music. Usually they let me play in here while they eat dinner.

The most TRAUMATIC part of my day! I hate the bath. Why do I have to be clean? Mommy calls me a stinky boy after I dirty a diaper. I try to explain to her that this is totally a normal and it does not require a bath. She didn't listen. 

It's medicine time. I am the best medicine taker Mommy said she has ever seen. I have only spit it back at her one time. I have to take Zantac to help control my reflux, but other than that I have stopped all other meds! I am such a champ.

Looks like bedtime. This is my "I'm getting tired face". I'll go to sleep...for now.