4 Years, A post for Cash.

Quick Canaan update: he is a heart warrior if we’ve ever seen one! He has bounced back beautifully is doing great!

Note: this may offend, bring up bottled emotions, or may not make sense why I am talking so frankly and publicly. If you think you will fall into those categories, will judge or criticize, STOP READING NOW. This post is not for you, I don’t even know that’s its for me.

Dear Cash,

It has been 4 years today since you came and went. Daddy and I had been told that getting pregnant would never be possible so you were extra special. You were our miracle baby. We love you so much.

It all started when we were living way, way up north in Canada. One day Momma started feeling weird, and loopy. Forgetful and crazy tired. Daddy thought I was losing my mind.  I waited about a week and it didn’t go away so I decided to take a pregnancy test. Guess what? It was positive! We couldn’t believe it! In fact, we really truly didn’t believe it so Daddy bought like 25 tests and spent all of our money just to see it say “yes” over and over again. We were overwhelmingly excited. Overjoyed, delighted. I can’t even use words to tell you how we felt. We were just so excited about you. Then we started having some trouble with the doctors. They couldn’t figure how old you were (your gestational age), even though we had an idea. There also weren’t enough lady doctors to go around for the area and we couldn’t get my doctor to believe that I have the condition that I have known about since I was a teenager. We found out later that she didn’t even read my medical history until it was too late. I will always wonder if there was something that could have been done. So we went on for several weeks and everything was going great. Until it wasn’t. It started with some spotting, which scared us to death. We went to the emergency room down in the city which was 8 hours away and where we happened to be that weekend for our anniversary. They didn’t see us until the middle of the night but the doctor said that everything was fine and this sometimes happened. We still didn’t get to see an ultrasound, they take a long time up where we lived, but he confirmed that I was in the 2nd trimester. We thought that meant we were out of the danger zone. But he did say that I needed to start bed rest. So we drove home and bed rest began. It took a few weeks but everything seemed to be okay and we were able to schedule an ultrasound. I was so excited that day, to see you and hear your heart beat. I felt like we had known you the whole time but that day, you were going to meet us too. Everyone in our life was so excited about you, our miracle. Daddy and I had even already chosen your name, even though we didn’t know for sure that you were a boy, at that point,  we really felt like you were.

Then the bad news came. I could tell that something was wrong because the ultrasound tech wouldn’t let me see the screen and didn’t let me hear your heartbeat. So we went home and tried not to worry. A couple days later we went back to the doctor to hear about you and see your pictures. Daddy and I were nervous but still so overjoyed with you that we were goofing off in the doctors office. When she came it was like all the air left the room. I knew immediately that something was wrong. She said, I hate to tell you this but we weren’t able to find a heartbeat. She also confirmed that we were in the 2nd trimester and that she expected me to miscarry within a few days. Or I could undergo a D&C. I chose not to as I believed that perhaps you still had a chance. We went home and cried and prayed and cried and prayed. We reached out to our family and close friends who were so far away, about 2600 miles. We told them to pray and received a lot of encouragement and great stories about how this sometimes happens. Then we waited.

The day that you left I had been in labor for the better part of the day. I don’t know if I was in denial or just naive, but I now know that it was labor. That night I had went to sleep knowing something was wrong. I woke up in the middle of night and went to the living room. I was looking out the window watching it snow and I started to pray. I prayed for you. I prayed that God would heal you. I prayed that He would heal me. I cried out to Him like I never have in my whole life. I sat this way for hours. And then you came. 

 

Warning: this may be graphic and is information that I have only shared with a handful of very close people. I think it’s time to say it. Bear with me. Or don’t. It’s up to you.

 

I went to the bathroom in our tiny apartment and knew that something terrible was happening. I yelled for your daddy and he came in there with me. By this time there was blood getting all over the place. I felt you leaving me. I cried, I screamed. I was begging God to stop this from happening. And then it was over. You were gone. We were able to hold you. To you see your tiny baby shape. You still kinda looked like an alien but you were ours. You had little fingers and toes and an umbilical cord. You even had little finger nails. Daddy and I both took turns holding you and looking at you. I talked to you a little. We then found a little tupperware container and gingerly put you in. I now find this detail really funny and every time I look at and hold that size container, I think of you. We then went to the E.R. We gave you to them in your little box. I thought they would give you back but they never did. If I had know, I would have tried to take a minute, to say goodbye. They took you and were able to measure you and run tests. They were able to tell us that you were at least 15 weeks, and that they thought I was 18 weeks. That you had most likely stopped growing at 15. They were able to tell us that you were a boy. But they weren’t able to tell us exactly what had happened. They just kept saying spontaneous abortion. Spontaneous abortion?! As if we didn’t want you, as if my body didn’t want you, as if they world didn’t want you. But you were wanted. So very much sweet boy, you were wanted.

 

I then had to be examined. It was so painful and scary. Daddy said I was screaming and crying and yelling that whole time and that I just kept saying no over and over again. I felt so alone. Part of me was gone. Part of me died. It was you.

 

So here we are with your baby brother Canaan. He is amazing Cash. You would have loved him so much. We think about you all the time. We wish you were here. You would be 3 1/2. You would probably have freckles and brown eyes. I secretly think you would have red hair. You would be stubborn and sweet and have a bad temper but be quick to laugh. Canaan would love you and would want to follow you around and try to pull your hair. We miss you. We love you. We wish you were here too. Please take care of your other sibling in heaven. Take care of all the babies, in fact!

Cash, we will never be the same because of you. It has taken me  3 out of the 4 years since you left to get back to who I used to be. And honestly even now, I’m still not the same. But, I am finding joy again. I’m searching for it and fighting for it. But part of me will always be gone, that part that made up you. You came and went and today we remember you. Today is your day Cash. The day you entered the world and left it. I am going to make sure that we remember, that we make the world a better place because of you. And that more than anything else, we fight for joy. The Lord is faithful and gives good gifts. He gives and takes away but is always faithful to bring joy with the morning.

Today is your day. Happy 4 years.

 

Love you so much my sweet angel,

Momma

 

Dr. McCutie is officially discharged!

We have been discharged after a fun night of play for C and an exhausting night for momma and daddy. We are hoping to stay another night here in Charlotte at the Ronald McDonald house just to let C rest before we hit the road in the morning.

Thanks for your prayers, we have definitely felt them!

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In case you can’t tell, this is a onesie that has a doctors jacket and stethoscope and a name tag that says “Dr. McCutie”

Out of surgery…

Well our little heart warrior is doing really well but things didn’t exactly as we had hoped.

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The doctor was hoping that he could just balloon out the narrow part of Canaan’s right pulmonary artery, but he actually ended up putting in a stent in order to widen the artery out more evenly. This means that he will probably need another cath in 2-4 years to widen out the stent, and then, when they go in at age 8-10 to replace his pulmonary valve, they will remove that stent. Basically the problem was that Canaans right ventricle had much higher pressure than it should have. You can see below how much of a difference the stent made, but it also brought the pressure in that ventricle down to where it should be. The before is on the left, the after is on the right.

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So, all in all, Canaan is doing really well and the doctor is hopeful that we will be home this weekend.

Word from the cath lab

Just heard from the cath lab that Canaan is doing well, but they had to put a stent in his right pulmonary branch which will mean more catheterizations in the future. They’re working on his left branch right now, which may or may not need a stent. More info when we know more.

Surgery day

Try not to fall in love with our beautiful boy and instead pray for him as he has another heart surgery today in about half and hour.

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Heart Problems

If you’ve been following our story for the long haul, then you know that our incredibly cute, fun-loving boy Canaan has not had the easiest of lives thus far (you can read the quick update from the last post, here).  He was diagnosed prenatally with Tetralogy of Fallot, which you can read about here.  Three of the major symptoms of Tetralogy of Fallot are pulmonary stenosis, ventricular septal defect, and over-riding aorta.  In other words, respectively, the valve and artery going to C’s lungs had some blockage, there was a hole between the two sides of the heart, and because of the hole and the blockage, the artery taking blood throughout his body was pulling a lot of blood that should have gone into the other artery.  Surgeons corrected the blockage, and patched up the hole, so his blood was pumping where it should be instead of being redirected.  Unfortunately, though, oftentimes the lack of adequate blood flow through the pulmonary (lung) arteries cause those arteries not to develop properly.  While the doctors were hopeful that the growth in his arteries would catch up with his development, after seeing a few echo-cardiograms over time, the doctor decided to refer us to a doctor in Charlotte who decided that he needs another heart cath procedure.

So here we are.  Back to the hospital.  It has been really difficult with all of this coming up so sudden.

At this point, we have already put our beautiful baby boy on the gurney three times and said our goodbyes. That might seem dramatic to you, but when you’re dealing with things like anesthesia, heart and lung bypass machines, open heart surgeries and just the plain and simple major organs, you don’t play around. This is serious. This is life or death. The good thing with the catheter procedure is that it is a lot less invasive than his two major open heart surgeries, but it is still “going under” and then dealing with a major organ and vital arteries. Like I said, this is not something you play around with.

In fact, “really difficult” is probably an understatement of what we have been feeling the past couple of weeks.  So if you know us in real life and we’ve been aloof or distant over the past several weeks, you now know why. There are a few reasons that this particular news has been so hard to swallow, 1. He looks awesome and is super active 2. We thought we wouldn’t have to face this (the whole gurney, saying goodbye, surgery thing) again for 8-10 years 3. When he was born we knew, at least in part, to expect surgery, this is unexpected 4. I don’t know that we have fully processed everything from Florida. I (Leah) had told myself in Florida that we weren’t going to do that “poor baby, poor momma” thing, in fact I got in a social media fight with some lady for calling him a poor baby, momma bear much?! I was strong so C would be strong. But the truth is, it WAS hard. And then we came home and it was still hard. Now we’ve had a few blissful months that have seemed SO easy in comparison. I think I tricked myself into thinking we have a healthy baby. And we do, except that we also don’t, and that’s hard. I am still strong and my boy is unbelievably strong but that doesn’t change the fact that this hard and that I’ve got some baggage. Thank you for letting me have space to even just say this, and to not try and fix it…or me.

The doctor told us that they were trying to catch it early, so we shouldn’t see any symptoms.  But we have been seeing some. And now because of noticing symptoms, our minds have been tricking us over and over into seeing all sorts of symptoms of heart problems: from a fast heart rate to fussiness to even turning a little blue, which have all happened undeniably. Some of them may be real, some of them may be the symptoms of his teething, but all in all, its been a difficult couple of weeks. One that has been fraught with facing another heart procedure, admitting to ourselves that our boy still needs some work done, dealing with crazy emotional baggage from the last time and again that stinky ole thing that seems to keep wanting to permeate our story, fear.

And I know that the next week until October 3, when the procedure is, will be difficult as well.  We don’t know how long he will be in the hospital, but best case scenario, we will only be in Charlotte for a few days.

Keep us in your prayers, we have some difficult times, but we know that Canaan is a fighter and that he’ll be a champ through this just like before. And when he is too tired, too weak, too sore to fight, we will fight for him.

Almost 6 months, an update on Mr. Adorable.

When you’re going through the adoption process, you forget to breath. Life is made up of paperwork, hyper speed and this inch worm waiting that seems to drag on for years. Our journey to adoption, though many years in the making (from the point of my diagnosis 10 years ago), took about a year. We are lucky. We are very lucky.

I say all that to explain where we’ve been for the past few months. I have to say, I’m very sorry for the silence. But when we arrived home from being in the hospital for a little more than 5 weeks, I needed to breath. We needed to breath. We needed to make sure our sweet boy kept breathing, and was able to breath strong. I am happy to report, we made it through the worst. But before I get into to the details, I still have a bit of explaining where we’ve been. Here is the long and the short of it, we have been busy “being“. Being a family, being new parents, being, being, being. And after we got through the toughest days, and believe there were many, we just wanted to continue being. So, blissfully, without much routine (other than baby schedule) we have been living (being). It has been amazing. I can’t tell you how much parenthood is changing us. We are thriving. Life is still hard, hard, hard. Bills are still there, jobs are still there, people relying on you, expecting things from you. But in every area that we felt we could “afford” to, we have taken off the last 6 months. And I’m so glad that we did. We stuck our heads in the sand and pretended that the only thing in the world was the three of us. This precious time has been heaven. But, here we are, ready to face routine and “life” again, and I find myself missing you all. And I know you’re wanting to hear what is up with our baby boy. We love you for that.

I just wanted to give you timeline of events,

  • C is born on 3/22 about 12 hours from our home. We are there for everything! I even got to be in the delivery room and cut the umbilical cord!
  • 1 week later moved to a larger childrens hospital due to his tetralogy of fallot worsening and his pulse ox levels rapidly declining.
  • 1.5 weeks after birth surgery #1 is completed and seems successful.
  • 2 weeks after birth, levels drop again and we realize that surgery #1 didn’t take. So he had a a cath procedure for his #2.
  • 3 weeks after birth a with a couple of complications from the cath, we, with the team of doctors and surgeons decide to do his full repair surgery for #3. It works!
  • And even though he was still withdrawing from the medication he was exposed prenatally, we are able to come about about 5 weeks after birth.

This time in Fl. was spent with some family visitors who were gracious to come when they could to support us but, it was largely spent with me, by myself, in Fl. with our boy. Brandon was able to fly/drive back and forth a couple of times and was there with me for the two large surgeries. The thing that got me through, I can honestly say, was you all. Our faithful family and friends, who sent care packages, gifts, texts, phone calls, emails, facebook messages and even sometimes when we really needed it, money. I will never ever be able to say thank you enough. I will never be able to repay you for kindness, support and love. It still blows me away.

When we got home we had about 8-10 weeks of terrible. Not only were we trying to survive being new parents with an infant, but we had to protect against infection because his surgery wounds were still at risk, we had to get into a routine for administering medication, we had to figure out how to clean all of that stuff (which has made me scarred a little when it comes to baths), and we had to help our beautiful, tiny, perfect baby guy get through a very serious withdrawal period. And, Brandon was at training with his job, gone for 6 day stretches for 4 weeks during the hardest part of it all. Sometimes I think back to that time and wonder how I made it! Honestly though, I can’t complain, it was hard, unbearably hard during some it, but every morning when I would see that perfect little face, I knew it was right. I knew I could handle it. I knew it was worth it. I knew that it wasn’t really all that hard because the reward was SO much greater than the cost. I still know that, and I’m trying my best to treasure every second, even the hard ones where I just want to be whiny.

So now here we are with our funny, active, silly little baby boy. He has almost caught up in size and weight, this we (and his doctors) attribute to the fabulous donations of breastmilk by some very loving and generous milky mamas. He is playful, he is so silly, he is crazy strong and would probably be walking by tomorrow if he could just figure out that balance thing. He is a gift. The greatest gift we’ve ever received. And boy are we blessed.

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Mr. Adorable himself while on a family camping trip. Yes, he is in fact an ewok.

I think when we lost our first baby, right now four years ago, something in us died. A purpose that was holy and ordained was paused. Now, we are un-paused. This purpose that was set out for us is being lived. We are parents. We love it.

Look out for later in the week a health update (we’ve got some news to share) and a life update (more news, more sharing).