The way things are supposed to be...

I have a newly formed dislike for the word "supposed".

What they said would happen:

The Norwood is SUPPOSED to be a very hard surgery. 
After the Norwood your baby is SUPPOSED to have a long recovery.
Your baby is SUPPOSED to be able to go home between the Norwood and Glenn
The Glenn is SUPPOSED to be a very easy surgery.
After the Glenn your baby is SUPPOSED to have such an easy recovery.
Your baby is SUPPOSED to be so much better after the Glenn.

What really happened:

The Norwood was a very uneventful surgery, everything went well.
After the Norwood we were on the road to going home after 3 weeks.
We ended up staying the 3 months in the hospital between the Norwood and Glenn.
The Glenn was very long and so many things went wrong.
After the Glenn his chest was open for 3 days and he is having a harder time recovering. 
He is in so much more pain now than after the Norwood. 

What have I learned? 
Man's ways are NOT God's ways.
We started this journey so excited because God was going to do great things! We were so excited to go home and have our family whole. We had this all planned out. But God, in His great mercy, had other plans for us.

So, has Aaron's life gone the way it was "supposed" to go? 

ABSOLUTELY!

Even as I sit here listening to the beeping of his heart and watching the numbers on his machines, I know that his little life is going the exact way that it is "supposed" to go. He is living the life God planned for him. Doctors and nurses can tell us the way things are supposed to go, but it really doesn't matter. We have stopped asking about timelines, recovery statistics, and feeding patterns. We can get answers to all those things, but their answers don't always line up with God's will. And I was always taught growing up that God's will was the best place to be. Why would I want anything less for my baby? 

I think I say this every blog, but having a head knowledge that God is in control is so much easier than actually trusting your life (or your baby's life) to His control. It is hard to not let circumstances dictate how I feel about God for that day. When Aaron has a bad day, I have a bad day. When Aaron is not doing well, then I usually don't do well. The days that he is better and doing what he is "supposed" to be doing are the easy days. Those are the days I trust God and thank Him for all He is doing. What about bad days makes God any less in control? He is the same. He is loving and caring and protecting my son every day, even the bad ones. 

God has allowed us to do so many things that we would not have been able to do if this was not the way he planned Aaron's life to go. We have gotten to meet so many new friends along the way, we've gotten to learn things that we never expected to learn! (I know so much about the human heart and the way blood flows through your body and lungs...) 

So, we are content. Content to leave Aaron in God's hands. Content to watch his little life go the way that it is supposed to go. And we are thankful that we have a God who cares, who has chosen us to be Aaron's family. Living our lives the way they are supposed to go. 

Chosen

It has been over a month since I have shared a blog post, so I figured I am way past due...

Time has been going so fast and yet so slow while we sit here in the hospital. Aaron is now 45 days old and 39 days past his modified Norwood (that's the name of his first open heart surgery). 

So many emotions these last few weeks. Excitement about going home, disappointment when we didn't get to go home, fear when we learned of yet another thing that is wrong with his heart, sadness over missing our older two boys; and round and round it goes! 

About 2 weeks ago we were completely ready to go home, we had done all our training about how to take care of our heart baby and he had done the things that he needed to do to go home. Then everything came to a halt. So hard to be so ready mentally for something as big as taking a baby home from the hospital and then to be crushed when it doesn't happen. Aaron stopped eating as well as he had been, his oxygen stats were lower, and he was more sleepy. Those are the reasons that we did not go home two weeks ago. All good reasons! All things that gradually happened and went a little unnoticed to us, but thankfully not to the doctors. Because of those things the doctors really wanted us to wait, and it's a good thing we did. A week ago Aaron had to have an emergency blood transfusion. His oxygen got very low as did his heart rate. Praise the Lord we didn't go home! We would have been making an emergency trip back down here. After getting over that disappointment we decided it's best to stay here as long as the doctors think it is necessary. Definitely doesn't make this any easier. 

We found out this past week that Aaron has something called WPW (Wolff Parkinson White). This is just another thing that God is going to be using in my life to grow my trust in Him. It may not display itself at all in Aaron's life, but it could and his heart wouldn't be able to handle it. People who have this have an extra pulse in the heart that can cause the heart to beat way too fast. So, since Aaron only has half a heart, it wouldn't be able to handle all the extra beats. Giving it to God. We have been told that since it hasn't shown up to be a problem so far that we won't have to worry about it. They will take a closer look at it when he comes in for his final surgery when he's around 3. 

It's a very weird feeling when life keeps going on all around  you and you feel like you haven't gone anywhere. As summer comes it's so hard to not get discouraged sitting in a hospital room. Thankfully we can take Aaron outside! That's a big blessing! We go and sit in the garden and enjoy the warm weather! 

Through this journey I have always said that Aaron was chosen. This is the path God has chosen for him, there is nothing genetic in what happened to his heart. It was how God chose to form it. I was reminded recently that God not only chose Aaron, He chose ME! He chose me to be this little boy's mommy. He thought so highly of me that He gave me Aaron to show his love. To teach me all these things that He is teaching me. I can't even fathom it. I was chosen because God loves me. 

Exceeding Abundantly

   

   Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, Unto him be glory in the church by Christ Jesus throughout all ages, world without end.                                                                    

                                                                                    Ephesians 3:20-21

    "Above all that we ask or think" 

  

    My dad reminded me of these words this week as Aaron has been going through open heart surgery. 

    On Friday Aaron was taken for his first open heart surgery. The Norwood Procedure it's called. You all know that the days and months before now we have been asking for your prayers as we prepared for that day, but I didn't know just how greatly God was going to answer those prayers. I had an unexplainable peace that I know came directly from our great God. He has been so good through all of this. Aaron came out of surgery great, the surgeon left his chest open because there was some extra bleeding. This is not uncommon and happens frequently with the type of surgery Aaron had. So we went down for a late lunch because we were told it would be an hour or so until we would be able to see him in his room. When we got back to the waiting room our nurse came to find us. There was even more bleeding than they thought. they had to go back in and try to figure out the problem. This took another few hours. Praise the Lord that they had kept his chest open! We finally got to go and see him around 6pm. Oh the difference that day made. Our sweet boy, who had looked completely perfect that morning when I placed him in his bed, now was full of tubes and wires and I could see right into his chest cavity. When they say they keep the chest open, it is OPEN. We actually watched our baby's heart beating inside his chest. And it was incredible. God has created us so intricately. And the fact that our surgeon knew how to deal with such a little heart is amazing. 

   Saturday morning we came in and the surgeon was there waiting for his OR team. They were going to close his chest! Awesome news, because that means they were no longer worried about the bleeding or fluids. And it was one step closer to him healing! A few hours later and our baby looked a little more like our baby. He has a nice big bandaid over his incision now. The next step after getting the chest closed was getting the chest tubes out and getting him off the breathing tubes, too. The breathing tubes can come out once he proves that he can breath on his own. And the chest tubes come out when there is no more bleeding or fluids coming out. Saturday night during rounds the Critical Care Attending wanted to see him breath on his own so he turned the ventilator way down...and he breathed! Talk about exciting! So they turned it back up, but not al the way to where it was and he was taking a few of his own breaths each minute. Well on his way to breathing on his own! After rounds the Attending said just how well Aaron was doing after just having surgery the day before. His nurses keep saying it too.

    Sunday morning we came in and right away I noticed something looked different but I couldn't quite see what it was. Our nurse said, "Well, do you notice anything different?" Chris right away said, "Oh, the chest tubes are out" Yay! Chest tubes are out! Such a big step! We were pretty excited. He has been pretty sleepy still today, and they are wanting him to wake up a little more so that he will breath more on his own and they can see if they can take that ventilator out. Tomorrow would be the earliest. Again all day we were told just how awesome Aaron is doing this soon post surgery. 

    This is where dad reminded me of that verse above. 

    I have such a hard time just rejoicing in all that God has done. God has been so good. One thing after another He has been showing us that He is doing "exceeding abundantly above all we can ask or think" And I am sitting here just waiting for something to go wrong. His heart to not work. His breathing to stop. But God is good! He's hearing all the hundreds of prayers that you all are praying for our precious boy. Aaron is completely in God's hands and there is nothing that can change that. He is such an amazing boy and I cannot wait to see what God is going to do with his life. All I know is it will be better than I could ever dream for his life. God has been doing more than we can ask or think. God is good and His faithfulness is never ending! 

 

He's Here!

We have welcomed our third baby boy into the world!

Late on Saturday evening I went into labor and early on Easter morning he was born! There were so many answers to prayers in those hours, I just have to give God the glory!

We had moved into our new home at the Ronald McDonald house Saturday afternoon (blessing number 1). We had initially been told that we would not be able to move in until I was discharged from the hospital, but got a call last week that they had a room for us! That night is when I went into labor. So thankful that we were able to move in when we did, we got to just walk over to the hospital when I wasn't sure if the labor was real or not. I was not expecting to be giving birth that night. I was scheduled to be induced Monday morning. So Chris and I walked over just in case. And hour after I was there our nurse decided that this was the real thing and we weren't going anywhere!

Blessing number 2 came in that I had texted a friend about possibly needing someone to stay the night with my sleeping boys while my mom came over for the birth! I was about to tell her that we didn't need her, but thankfully I took her up on the offer and she was on her way (It was 10 min later that I was told we weren't leaving the hospital)! Labor went quickly after that and around 1am Sunday morning Aaron Ezekiel was born! If you didn't know about his heart, you wouldn't think anything is wrong with him. He is just perfect in every other way.

Blessing number 3 came right when he was born. I vaguely remember the Doctor who delivered him saying, "Wow, he has a true knot in his chord". And all I remember thinking was, "Wait, babies can die in-utero from a knot in their chords". She then told me to look and sure enough, his umbilical chord had a complete knot in it. Brings me to tears just thinking about how God protected Aaron even while he was still in me. God has great plans for this little boys life! I cannot wait to continue to watch and see those plans! I was able to hold him for just a few brief (but wonderful!) moments before they took him to the NICU. Chris went with Aaron and thankfully I had my mom to stick with me. A while later we were able to go down to the NICU to see him as the cardiologist was doing his first ECHO. We are so thankful for technology! Thankfully there were no surprises in that ECHO and things look very much like they did while he was growing. The Doctors have been such a help already.

Aaron is doing very well. He is now 3 days old and I got to give him his first bottle today! That made my Momma heart SO happy. For those who have had babies or older kids go through surgeries or the like, you know. It is so hard seeing your little one hooked up to so many machines. So hard not to be able to just pick him up whenever I want. SO hard not to just feed him when I think he needs to be fed. We are blessed that we will have this week to hold and feed and snuggle him before he goes in for his first surgery. He is scheduled for first thing Friday morning.

Pray that we would be able to use this time to love on our boy while still loving our other two! So thankful that my parents are both here and my sister too! We have such an amazing support system, I don't even know where to start in saying thank you to everyone.

God has just been so good, even when we didn't know He was working, He always was! And although these next weeks and months are not going to be easy, I know He will still be working, even when I don't see it or don't believe it. Thank you for your love and support!!

To GOD be the glory!

Heartfelt

I have discovered something.

It is one thing to say “I trust God” with whatever situation I am in.

It is quite another to actually live that out.

It. Is. HARD!

I have started this blog post many times in the last few days. I have even gotten to the point of publishing it before I delete it and start again. I don't know why it is that I can't get the right words out of how I really have been feeling these last few weeks. If you were to ask me in person I would tell you exactly how I've been feeling: sad, scared, nervous, alone, terrified, impatient, angry...the list could go on. I'm not one to coat over my true fears and feelings, all you'd have to do is spend a few minutes actually diving into my life and you'd see it all. I am not good at hiding my feelings. 

This journey has not been an easy one. And I know we are just getting started. I have seen the ugliest parts of me and it's terrifying. In my mind I know that Aaron's life is completely planned out, just like each of ours are. It doesn't make the fear any easier. It is so terrifying (I use that word a lot, but it truly sums up how I feel about this all) to not know if my baby will survive the first few months of his life. To not know if I'll be able to hold him in those first moments. To not know who will be there to watch the big brothers when delivery time comes. Not knowing is HARD! It is so hard to focus on the now and taking care of those in my home at this point without worrying about the one who is constantly reminding me he is there by kicking and squirming all around. Not that I am complaining about the kicking, he is quite a strong and active little boy and for that I am extremely grateful. He's constantly showing me he's there and thriving. 

It has also been scary to think about how I have reared my older two boys to this point. I am so scared of not getting to be with them 24/7 once Aaron is born. Will they hate me for the rest of their lives? Will they be terrible for those who will be taking care of them? Have I done enough to prepare them for this time that we'll be apart? All these things scare me. They are always on my mind. 

It is so hard to know what to say to people when they are going through a hard time, isn't it? I am that way. You don't know what to say, so you don't say anything. You don't know what to do, so you don't do anything. Now, I know that I can't speak for everyone, but this has been an extremely hard part of this whole process. People skirting around the topic; you know, "Hey, how are you?" then they have to go somewhere real quick. Or when you start to tell them how you really are they get all nervous and try to end the conversation all too fast...this has happened more times than I can count. And oh boy is it hard.

So what have I learned about people going through difficult times? First, never underestimate the power of prayer and scripture. I cannot count the times when I am having a bad day and someone wrote me a note or sent me a text with God's beautiful words and I could take heart in those words and not in my own strength. Second, never think that the person going through a hard time already has a friend helping her through it. This is not always the case. People may be hurting alone, trying to do it alone, and drowning. Third, ASK! Don't be afraid to be real with people and ask them point blank how they are (and actually stay around for the answer and care about what they're saying). After living these last few months with this weight on me I hope I am now better equipped when a friend (or acquaintance) of mine will go through something hard. 

Now I realize why I have never published this yet. I feel so "Woe is me" when I type it out...but I was encouraged to keep writing, just write my feelings I was told (you know who you are ;) ). There are many times when I think that I shouldn't feel these things. that I am a Christ follower so I should have my emotions all in check. And for the most part, I believe that. Maybe that's why having these feelings is so hard for me. I feel like less of a Christian. I feel like how can I possibly point others to Christ when there are times that I don't feel Him near. 

But maybe that is the beauty of "When I am weak then I am strong" (2 Corinthians). God has brought me to that weak point over and over again in these last weeks. And I know He is not done with me yet. I know that there are going to be so many more weak days. And all I can do is cry out to Jesus for help. Because in reality, He is the only one who can truly help me. He has been where I have been. He's been hurt, alone, rejected, sad, angry...

The only thing different is that He's seen the end of my story, the end of Aaron's story. He has it all planned out. He knows. 

And I can rest in that.

From God's Heart to Mine

   Every time I get a card in the mail, a message on social media, or a text I am once again humbled at the thought of just how many people are praying for us and for Aaron. To know that this precious boy has had so many prayers for his little life bring tears to my eyes. I know that God has a wonderful plan in store for his life and I can't wait to see what He does through Aaron!

   God has been so good along this early part of our journey. I wanted to share some specific ways that He has been showing Himself faithful to us through our baby's heart.

   

   Back in September my husband (Chris, for those who don't know) accepted a job offer to work from home. This was a long process of praying, making pro/con lists, and debating whether we should step out in faith or not. To leave a job with so much security for our growing family (we had just recently found out we were expecting Aaron), it was a difficult choice. Ultimately, he took the job. We never thought that that was God's first step in showing us that he is in control. Because of this new job, Chris will be able to work from the hospital during Aaron's stay there as a newborn (providing we can buy him a good laptop before then). Praise the Lord! He had already been working, because He knew that this was the road we were going to be going down. Even as I type this I am in awe of how thoughtful and caring our God is. He could have kept Chris at his previous job, He could have made it so much more difficult when baby arrives; but He didn't. He cared enough about our little family in northern Wisconsin to allow this new job and allow our family to be together at such a difficult time. God cares.

   At my first check up with my OB, around 12 weeks, we found out the 2^nd way God was going to work all things out for our good. My Dr. told me that he would no longer be delivering babies after March (I was due in April, just a month later!). I was bummed, I really liked him and didn't want to have to make a choice of finding a new Dr. He told me that I could continue seeing him until around 32 weeks, or I could go to a different Dr. right away. He gave me some suggestions of Dr.'s and left it at that. I went home and told Chris of the news, we decided that I would rather switch Dr.'s right away so that I could get to know the new Dr. during the whole pregnancy instead of the last few weeks. I decided this because I was going to have to change hospitals, Dr.'s, the drive (it was twice as long now to get to the new hospital. Remember, we live in the middle of nowhere...so instead of driving 25 min to the hospital, we were now going to have to drive 45 min. I was NOT looking forward to that! I'm a little paranoid about giving birth in the car.). Anyway, I decided to change Dr.'s and God had it all planned out (way number 3 that God was in control). At this new Dr. I was just one appointment away from my ultrasound! Yay! So she told me that at their clinic the procedure is that after the tech looks at the baby, they have a high risk Dr. that also comes in and looks, just in case there is anything wrong (ding ding ding! Way number 4 God had us all taken care of). This may not seem like a big deal, but I had the choice of having my ultrasound done at my previous hospital (so I wouldn't have to drive as far) but my Dr. convinced me that having it done at the new place would be better because the high risk Dr. would be there and I'd get better pictures of my baby (what Mommy wouldn't want that?!). As you know, it was at that 20 week ultrasound that we did, in fact, get some pretty good pictures of our baby and that the high risk Dr. was very involved in showing us our baby's condition. Now, people may say that this was all coincidence or that it was ironic that these things just happened. But I know the truth. This was no chance happening, there was no “it just happened to be this way”, there was no “wow are we lucky that this Dr. was able to see us”. This was all planned by a loving and caring God. He knew where we would need to be to get the best reading possible on that ultrasound, He knew that I would need to switch Dr.'s, He knew that the extra 45 min drive ultimately wouldn't matter. He knew. He cared. He loved us enough to change our plans even though we didn't think they needed to be changed. God loves.

   I am so sure that there will be many more things that God reveals to us how this has all been in His perfect plan. And I am also sure that there will be many things that we don't even realize He has done! We know that He cares about us, we know that He loves us, we know that our lives are in His hands. We rest in those promises and we rely on them daily as we are going through this journey. These truths don't make the hurt of this process go away, they are still there. It hurts me to know that my newborn won't get to come home right away. It hurts me to know that he'll be having open heart surgery at a week old. It hurts me to know that my other 2 boys won't get to see mommy or baby Aaron very much. But God, in His great mercy and care and love, will be with us through all the hurts and sorrow that we go through. He will also be with us in all our joys and triumphs! Aaron is already such a joy to our family. He is such an active baby (much like his big brothers). His brothers love to talk about him and to him. We thank God daily for his life and that he is growing!

   All this to say, our God is good. He cares. He loves. And He shows us that daily by people who are praying and loving on our little family as we go through this journey!  

From My Heart To Yours

   I have attempted to start blogs before, and failed. I have realized that the reason for this is that I have had nothing to say. I have found my reason to start again. I now have something to say.

I am wife. I am mommy. I am chosen.

   My husband and I have been married for 6 years. We have two boys ages 3 and 2 with a baby on the way! God is the creator of my life and to Him I owe all that I have.

   I have always been one to trust God with my life. Being raised in a Christian home I learned at a young age that He is King and He controls our lives. When we give our lives to Him we are in the best place we can be. I have always believed this, but have never had to fully put that trust to the test.    Until now.

   December 6^th started great! I was so excited to go to our ultrasound and see pictures of our baby and find out what the gender was. (I was also a little nervous. Call it what you will, a mother's intuition maybe). We had it all planned out. The boys were going to Grandma's for the afternoon and Chris and I were going to make a date night out of it! We had a plan to find out the gender after the ultrasound over dinner at Olive Garden (love that place!). Things started out great, we saw our little bundle of joy on the monitor. When the tech was all done checking everything, she stepped out of the room to get the Dr that looks everything over just to make sure nothing was missed. As she was gone I looked at Chris and said, “She sure looked a lot at the heart”. To which he responded with, “Well, that is why we're here. This is to make sure all the vitals look good, the ultrasound isn't just for finding out the gender”. We laughed, and that was it. For a moment. The Dr. came in and re-looked at everything (and I thought once again how much he was looking at the heart). When he was done he stood and walked around the table. He then said words that I tear up thinking about even now. He looked at us and said, “There seems to be a problem with your baby's heart.” That was about the point that I couldn't hear anything else that he was saying. My mind was in a haze and all I heard was something about going to his office to talk about what he saw. He and the tech walked out of the room and I got off the table and sat next to my husband. That is when the tears started. The type of crying so hard that it's hard to breathe. I composed myself and we headed to the Dr.'s office. There is where we heard just how bad this Dr. thought that the situation was. There was a lot of head-nodding and crying and not quite understanding what all was being said. Our little baby had a heart defect. So much so that the Dr. didn't even have a name for it. There was no septum between the ventricles and there was not a “good visual of an outflow” of the blood going to the lungs (among other things). This Dr. is not a heart specialist, so he could not tell us for sure what was going on. He did tell us that we would probably have to deliver at the Children's Hospital and that the baby would have to have surgery shortly after birth. He also said that a baby's heart changes and grows a lot between weeks 20-22, so we left feeling hopeful that God would change things.

   After that appointment we headed out to eat, as planned. We got our table and Chris had the envelope with the gender of our baby on it. And at that point it didn't even matter. All that mattered was that our baby was hurt and that we were hurting. We didn't find out the gender that night.

   A week later Chris presented me with a little blue onsie. It was another boy! I truly was so surprised (I was SO sure it was a girl) and happy. We love our boys and they're going to love having a little brother.

   We spent the next month celebrating Christmas and trying not to worry about our little boy. Chris kept telling me, “There's nothing we can do. It's all in God's control.” And let me tell you, that was not easy to remember. I just kept praying that God would do a miracle and heal his heart. Or maybe they were wrong about what they saw on the ultrasound.

   After many weeks of waiting we finally got to see a Cardiologist. January 3^rd we got the news that not only were they right during our first ultrasound, but that our boy's heart was even worse than they originally thought. There are so many little parts of his heart that are unique to him that there aren't even pictures or a name to call it (hypoplastic right ventricle was just one of the names for one of the problems). Our cardiologist was so thorough and clear with how he explained it. He only has one working ventricle. The ventricle that pumps blood to the whole body. The side that pumps blood to his lungs is not there, which would make breathing upon birth very difficult. He would not be getting blood to his lungs and therefore oxygen would not be entering his bloodstream. He will have to have open heart surgery shortly after birth. This is just one of the issues with his heart. he also has some other major issues that will need to be addressed in his other heart surgeries (he will have 3 open heart surgeries for sure).

   God is good.

   He is in control.

   He is our comforter.

   He is the author and finisher of our faith.

   Aaron Ezekiel is the name of our 3^rd baby boy. As soon as we learned about his heart defects we knew that we wanted a name that would remind him each day of our great God. Aaron means blessing, and Ezekiel means strengthened by God. He is truly a blessing already and we pray each day that he would remember where he gets his strength. We are not strong in and of ourselves. God is the one who allows our heart to beat. He is the one who puts that breath into our lungs. Without Him, it doesn't matter how strong your heart is. He is the one who allows it to beat.

   This is just the beginning of our journey. We have many more months of Dr. appointments and surgeries and we will be walking through it together. With God as our leader. He will do more than we could ever think in our baby's life.

   All we are required to do is trust and obey.