Time Flies

Well, since I've been here last, we've had another baby and he's now a toddler! You know what they say; time flies when you're having fun!

Life has been good. It doesn't feel so new anymore. The new city isn't so daunting anymore. The new job always has its ups and downs, but going well, nonetheless. The new baby? Well, now there are two!

Josiah has been doing great. At his last check in February, his heart was looking fantastic. We are looking at his next heart surgery in about a year. He just finished his first year of preschool, which he loved. He made lots of friends and loved his teacher most of all. He started tearing up this week when I told him he had graduated her class and he'd get a new teacher in the fall. He said, "I don't want to be big and graduate her class. I want to stay with her." Heart melted. Sorry buddy. There are other great teachers out there, I promise. (Even though she was really great!)

Josiah still has a physical therapist and speech therapist who each visit twice weekly. Physical therapy is challenging for him, but to the average eye, he looks like every other 3 year old out there. He just finished swimming lessons and he is currently playing soccer. It's pretty adorable.

Speech therapy, however, is where our big challenges come into play. Our meal times have become something I dread. They are hard and I pray for patience before the start of every meal. Eating has become such a burden and it's something that he has grabbed hold of for control. He is still eating mostly purees and we have worked hard to get him capable of eating on his own, but the desire for eating is lacking. If we are not sitting by to tell him to eat a bite and another bite and another bite and another bite (etc.), he will be content to sit at the table and stare at that bowl of food for hours. To say it's been hard seems like the understatement of the year. Tears have been shed (by myself and him) and it feels like whichever way I choose to approach the mealtime for the day, someone will think I'm doing it wrong. So, with that, I ask for prayer. Prayer for our 3 meals a day to go smoothly. Prayer that Josiah would enjoy eating and be able to keep his meals in his tummy because we still see at least one meal come back up once a day. My daily prayer is that he will desire to eat and enjoy it!

Let's not end on that note though...Josiah is a wonderful big brother. He and Levi love each other just as brothers should. They play together, push each other down the slide, drive cars all over the house with each other and so much more. When I told Levi that it was time to get Josiah from preschool, he shouted, "YAAAAAAYYYY!" with his hands high and a smile on his face. They are buddies who make each other laugh constantly. More about our spunky Levi for another day. For today, we are thankful for our normal lives, even if they are a bit abnormal to most people. 

Heart-i-versary

Happy One Year Heartiversary to our little man! He is now one year past his Glenn operation, so we decided to celebrate with a heart cake! It is heart month, after all!

In Josiah's world, singing and cake does NOT warrant any smiles.  He's probably sitting there thinking...here we go again...they're going to try to make me eat this stuff!

He's holding the cake up for the camera so well! And, as you can see, that little finger with frosting on it is careful not to touch that sticky object again!

Well, as usual, cake ends with tears.  However, we are still so proud of how far he has come from a year ago!  He may not be eating cake just yet, but he is eating food by mouth. And for that...we are thankful. :)

Trains

We had a few free moments before speech therapy one day, so what better way to use our time than to take adorable pictures in front of trains?!  His balance came in handy as he was able to stand on his own while I backed away to snap a few photos!

I just can't get enough of this little boy in his overalls!

Been a While!

Wow! It's been a while since I've written a post!  A lot has changed since the little man's first birthday in regard to his eating.  He conquered a HUGE hurdle and has begun to eat by mouth. We are so proud of him for taking "bites" and not needing his feeding tube throughout the day. The majority of our attention has been toward this feeding journey that we're on.  Josiah has really come a long way, but it seems that we're at a standstill. His lack of weight gain, constant throwing up and aversion to textures have made it very difficult to make progress.

We have three main goals right now. One: Figure out what causes him to throw up. Two: Get him to eat/chew textured foods (and enjoy it). Three: Get him to drink from a straw. Now to the average joe, these really seem like pretty simple goals. A few nights ago, as we were trying to get our tired and sobbing baby to eat a sweet potato, I looked at my husband and said, "Man, this stinks! I've seen other babies just pick small bites of food up off their plate and eat with no problem. Why can't this just be easier??" 

When we are about to try a textured food, we have to prepare ourselves--build ourselves up for the challenge.  It's going to be a battle, but when we see him pick up one bite of food; the size of an ant, mind you, it's a giant victory! We feel like we've accomplished something huge! So that's one of our goals--to make it to a place where it's not a battle, but something to be enjoyed.

Our third goal also seems pretty easy, but for a little person who has NEVER used the suck reflex, it's a pretty big challenge.  He drank from a bottle for 2 days and we've sampled with sippy cups, but nothing has ever stuck. It's quite the process to teach him to drink from a straw.  Currently, in speech therapy, our therapist dips a straw in water and puts her finger over the end. Then, keeping the water in place, she puts the straw in Josiah's mouth and lets that tiny bit of water drip into his mouth. We do this again and again, but she eventually keeps her finger on the end of the straw to get him to try and suck the water out, rather than let it drop in his mouth. And eventually, she turns the straw into the cup in one fluid motion to keep his suction going in hopes of him drinking water through the straw. Sounds easy...right?

And that first goal...the one I skipped over because that's basically how we feel in general.  There seems to be no solution to his throwing up, so we feel lost.  We've tried medication, checked allergies, done GI studies, etc.  Doctors are stumped by him and have no insight for us. Meal times become frustrating because everything ends up coming back up anyway. So we pray. We pray every night as we put him to bed.  We pray that his tummy will get stronger and that God will heal whatever it is that's ailing him. Pray for God's hand on this tiny life.

Happy Birthday!

Happy 1st Birthday to our little man!  I've always thought that birthdays are a pretty big deal, but this one was a VERY big deal! ONE! Josiah had 2 parties.  We were able to go back to Nebraska to celebrate with family and then we had his big ole' Texas party with our "Texas Family". :)

The Nebraska party was a little spur of the moment, but it couldn't have been any better!  We were able to celebrate with Grandmas, Grandpas, Aunts, Uncles, Cousins, Great Grandma, and  Grand Aunts and Uncles!  The party was post-bedtime, after a crazy week with little to no naps, but it went about as well as could be expected!  We left the next morning to return home for his Texas party the following day.

We had a Police-themed party with a gorgeous police cake and a little donut smash cake for the 1 year-old.  There were lots of friends and it was an all-around great day!

We had LOTS of food! Complete with [cop]corn, donuts, police cars, & "lunch break" (sandwiches) :)

We had a "craft station" complete with a spot to make your very own police badge!  The kiddos were able to take home a treat bag complete with a mini police car, a star sucker, and a police ducky.

A friend of ours made his awesome police cake topped with a police siren!

Both parties require a family picture!

Happy Birthday!

Two parties means two smash cakes, two renditions of "Happy Birthday" and two MAJOR cake-related melt-downs! Can't blame him. For a kiddo who doesn't eat anything by mouth, putting a sugary, gooey, sticky cake in front of him could be enough to make anyone melt down!  We didn't force the issue, as this was a celebration...not feeding therapy. ;)

Of course, Mommy and Daddy were quick to the rescue! :)

Once the party was over and the majority had left, we let him explore in a little more comfortable setting.  None of the cake made it to his mouth, nor did we expect it to, but I did get those "smash cake" pictures that are oh, so adorable!

Happy Birthday, Peanut! We love you more than you'll ever know!

Our Hero

Many who know me well know that I'm not one to vocalize my political views or get into a heated argument about something.  One, because I'm not one to research topics to get accurate information to argue my point. Two, because I don't like conflict.  Well, this stirred me up a little too much and I feel as though something needs to be said.

As I opened my email today, I noticed a popular tweet headline: "Local police involved in 400 killings per year".  Opening the article, I instantly became angry at the portrayal of our police officers.  Reading through, I read how one sided it was toward the evilness of police and the portrayal that they are out to get innocents.  Really?! It saddens me to be reading articles about these men and woman who, day after day, go out and put their lives on the line to keep us safe, yet they are targeted as malicious and nasty.

There is a lot of coverage, especially this week, about a particular shooting that happened.  Again, I don't know specifics (remember...research... :/ ), but I do know how our nation has jumped on this bandwagon that police are bad.  Let me tell you something...my husband is one of the most protective men whom I've ever met.  He wants the best for people, but he also knows that he can't "fix" the world. (If he could, he would!) He has wanted to be a police officer for a long time. And now, here we are. He did it! But now, on top of all of the rational fears I have of having a police husband who is on the streets many hours a week, I also have to worry about what would happen if he got into something and our nation turned against him because he was protecting the lives of everyone else in that situation.

I'm new to this whole "police wife" business.  Here's what I know about it: it's scary. Every night as I'm putting our son to bed, we pray for Daddy's safety. Every night as my hubby walks out the door, I say, "be safe". I've said it every shift he's worked since he started on the streets.  A part of me jumps when my phone rings or there's a knock on the door while he's at work for fear that I'm about to get bad news.  This isn't an 8-5 shift at the office.  It's long hours with a lot of missed family time because he's serving a community who could care less about him and the job he's doing. 

Here's the bottom line: I'm proud of my husband. I'm proud of the other police officers who serve communities around our nation.  It isn't an easy job.  They get a bad rap and they put up with a lot. A LOT! I'm tired of hearing our media making villains of these people for doing a job that not many would do. A job that not many could do. They are heroes. Let's treat them that way.

The Other Side

We're on the other side...we've made it through the really icky part.  As I write this, I'm sitting on my parents front porch, feeling the breeze and being thankful that we are able to be 650 miles from home and his doctors and therapists and nurses and...!

This past year has been all sorts of things. We moved from all who we love and all that was familiar. We had a super hero baby who has made it through all sorts of odds. (And continues to do so) :) We've started experiencing the "firsts" that new parents experience the day they come home from the hospital with a healthy baby that we just took a little longer to get to.  Babbling, clapping, sitting up, going out to eat, swimming, vacations, and so many more! We still don't have it "easy", but it's getting there.  When I look at the feeding tube on his face, it's still a source of frustration and continued hard work. However, when I think about the big picture, I can handle some feeding problems if it means we're at home dealing with these issues, rather than being in the hospital for bigger reasons.

We're so glad to be where we're at. It felt like we would never get here. Some days, it feels like we'll never have a baby who eats by mouth, but I know we'll get over this hurdle too. Eventually. For now, we're grateful for the steps we're making toward our normal "non-hospital" life.

Here's some photos of our life on the other side. :)

Sitting up like a big boy!

First airplane ride! Handled it like a champ!

First swim!

Helping Mom do some grocery shopping :)

Going out to eat!

Clapping! Yay!

Standing!!

These things may seem trivial, but we try not to take the little things for granted around here.  He's gone through a lot to get to these milestones! Hooray for normal life on the "other side"!

Easter Photos 2014

We took our little man out for some Easter photos. We got him all dressed in his cute little Easter outfit, pulled his feeding tube, found a shady area, and we were off!  He did a great job and we are thrilled with the results! :)

Life. Is. Messy.

This is a picture of what I've been waking up to for the better part of 2 weeks.  Yes, that is throw-up on his chin. Yes, that is a giant poo stain on his bed. No, he did not get himself undressed. :) I was about to put this boy in the bath tub, as we've done almost every morning for 2 weeks since he wakes up as a complete mess!  Good news? He smells really good for about 2 hours until he throws up again.

It can be easy to think that our lives are all flowers and rainbows now that we're out of the hospital, but it's not.  We still have frustrating days.  Feeding has been a constant struggle.  This boy has the most sensitive stomach of anyone I know and he seems like a complicated puzzle that we're trying to figure out.  Last week, I spent one morning being incredibly frustrated by him because he refused to eat anything by mouth.  Even our speech therapist was stumped.  He knows what to do, he just won't it.  Stubborn.  Ya know what he did that afternoon? He grabbed his foot for the first time ever and stuck his foot in his mouth!  Suddenly, things seemed better.  We've been trying to get him notice his feet for months!

Even though these past couple of weeks have been messy and frustrating, I can't help but look at my sweet little boy and realize that he's just doing the best he can.  He's gotta be one of the happiest babies ever!  This picture is of him right after he threw up and we got his wet clothes off of him and he's smiling away!

Our life is messy.  It's chaotic. But I try to enjoy every second.  Last night, I was reminded of God's grace that He's shown through all of this.  We were able to go to church for one of the first time's since Josiah was born and it was great to be surrounded by a group of believers and to hear God's word.  Our pastor shared Romans 8:18, which stuck with me.

"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."

There will be a day that there will be no more suffering. No more pain. No more tears.  Those days won't come on this earth. Those days will be in eternity with our creator. Oh, how I look forward to those days, even more so now that we've felt suffering.  But as one of my fellow heart mom's said, we didn't go through all of this suffering and watch our boys through all of this pain to live our lives in fear.  We did it so we can live our lives.  Messy or clean. Chaotic or simple. Finding joy.

Another Round

We have been gearing up for this surgery since the day we found out about Josiah's heart condition. That was when I was 23 weeks pregnant. It seemed like an eternity until we got to this point. We had so much to conquer before we got here. As I sit and write this, we are very much in the thick of things. Sitting in the ICU, looking at wires, IV pumps, monitors, syringes, drainage tubes, scars; it's a relief to know that we're past this surgery.

We spent 3 months at home and we've been working so hard to reach milestones, only to have them squashed by this fast approaching day.  Although we'll have some more work to do now, there isn't another fast approaching surgery that looms ahead of us. After this, we get to go home...stay home...for at least a year (Lord willing)! When we go home now, we can reach milestones and go to the next. I don't have to wonder how long it will take him to roll over again after open heart surgery. I won't have to wonder if he'll have an aversion to things in his mouth since he won't have another breathing tube. We'll get to feel like every success gets to remain a success because we won't have to work to succeed at that skill again. Sweet relief!

Relief was the feeling that overwhelmed me when we were told that his surgery had finished. Calm. We made it to this day that has been greatly anticipated. He did it. But funny how those feelings can quickly turn to fear, anxiety, and panic. I knew that recovery wouldn't be easy. I knew! But I hoped for the ease that I've heard about with other kids. Our little man marches to the beat of his own drum. He doesn't do well with anesthesia. He takes a while for his tummy to wake up and allow food in again. He just had open heart surgery! He deserves to be cranky! But his cranky turns into oxygen saturations dropping and arching his back and flailing his arms and kicking his legs. Agh! While being mad at one point, he held his breath for so long that he passed out. Talk about giving your mother a heart attack! Geez!

We are now headed into night #2 and I feel hopeful that we've taken a turn for the better. His bleeding has stopped. He isn't waking up in thrashing anger. He's sleeping. He's calm. How has this all been in a span of less than 48 hours? Looking back, it will all seem like a horrible dream and a blur of a reality.  But for today, I continue to pray and ask The Lord to control this recovery process and heal my sweet little boy.

In The Middle

The middle of any journey always seems the hardest. The longest. Overwhelming.

            "The middle of any challenging journey can be the most critical point.  Many of us may not be where we were, but we're not yet where we want to go. Perhaps the terrible bondage of Egypt is behind us, but the land of promise seems remote.

            The longer we wander in the wilderness between Egypt and the Promised Land, the greater the chance that we'll return to captivity. The pull of familiar comforts and habits can feel overpowering, particularly against uncertainty of Canaan's unknowns. But as we persevere, God is faithful to continually give us the extra push of motivation to press on." Beth Moore

When you start out on a journey, the beginning can be exciting, scary, or unknown.  Our journey was all of those things.  We had no idea the complexity of Josiah's condition and each day felt like we were just trying to keep our heads above water.  We were just trying to survive.  Now that we've been home for a couple of months, we've found routine.  We follow the steps of our Safe at Home program.  We talk with Nurse Practitioners, Cardiologists, and nurses weekly, if not more. 

We're in the middle of it all. It wasn't until we were sitting in the waiting room, speaking with one of Josiah's cardiologists about his cath procedure, that it dawned on me.  This is forever.  The complexity of this condition doesn't end simply because we're not in the hospital anymore.  This is his life; our life.  As his doctor was explaining what he did in the procedure, my mind couldn't help but think; "Wow, is this really what we do now?  We listen to doctors explain coiling and ballooning and...?  I hear parts of the heart that I never thought I'd know, and I still have a hard time trying to remember them all. I never imagined this to be my life a year ago."

Don't get me wrong.  I wouldn't trade a single moment that we've had with our sweet little boy.  I will forever cherish him for the person he is, regardless of what his heart looks like.  Would I love to fix this for him? Absolutely!  But I am eternally grateful to those who know how to give him life. He's a miracle.

This road that we've been traveling is long.  It's hard to express to those who don't live it, day to day.  There is constant worry.  There is constant stress.  There are days that I just feel raw. There are many days that I want to my parents house over my "lunch break" and just sit on their couch and cry.  I want to sit at the kitchen table and chat with my mom as she busily gets dinner ready for the evening, before everyone gets home and she starts teaching piano. I want something familiar and comforting to make this better. Like the quote above, there is so much unknown in front of us, that the pull of familiar is so tempting.  Nothing about this journey has been familiar.  Everything has been new. Challenging.

We moved here for a job.  We ended up getting excellent care for Sy. Next week is his Glenn surgery. Next week marks the next step of this journey.  We still have a long road.  I learned from the cath that another procedure or surgery is like hitting a giant reset button on everything we've worked toward.   It doesn't mean that we've reached the Promised Land yet, but God is faithful to continually give us the extra push of motivation to press on. And press on, we shall.

A Full Year

Needless to say, this has been one busy year! January started off with finding out the news of being pregnant with our little peanut. We were beyond thrilled! We always said that we wanted to wait 5 years before starting our family and after celebrating our 5-year anniversary in December, I'd say we accomplished that goal! From February through April, it was a pretty standard year. I was doing my thing, working as a preschool teacher. I woke up every morning completely miserable, throwing up because of my pregnancy and heading into work nauseous. I rarely took sick days in my 6 years of working at my job and I think I used the more sick days during those few months than I did in all 6 years! My little babe was already striving for Momma's full attention!

The end of April is when things started to take off for 2013. Michael got a call that he had three more tests to complete as part of the final interview process and he would start his new job...in 2 weeks! We traveled down to Texas for a brief stay. Michael passed all of the tests, I found us an apartment to live in and we headed back to Nebraska all within 3 days. Michael spent 5 days at home and then he was off. During those 5 days at home, Michael finished his last days at his current job and we had our 19-week ultrasound letting us know that we were having a BOY! That ultrasound also revealed that they couldn't see his heart adequately, so we needed to come back in 4 weeks for an ultrasound of his heart. There was nothing that ever sparked concern for us, we just figured our little man was much too wiggly for them to get a good look at his heart. Looking back, I wonder, did they see someone wrong? I'll never know. We celebrated the news of our little boy, had a last minute farewell pretty for Michael, and then he was off! He left for Texas and he stayed with some very gracious friends for 4 weeks until I moved down and we moved into our apartment together.

May was the start of my whirlwind. With Michael gone, that left me to pack up everything in our apartment, finish my school year and say some very hard goodbyes to coworkers and preschool families alike. May 29 was the day of my ultrasound to look at our little guy's heart. My mom joined me for the ultrasound because I figured it's something that she doesn't get to do often, if ever, since it's typically a husband job. :) The ultrasound took about 30+ minutes, with me doing toe touches in the middle to get Sy to change position.  The tech gave me a hug when the ultrasound was finished and I thought she was just super sweet. My mom left for a band concert?...and I went to visit with my doctor. After 45 minutes of waiting in the room, she came in and started to explain the diagnosis. Through subtle tears, I was trying to comprehend what she was telling me. What's wrong with his heart? Are you sure? What does this mean? I went out to the hallway and crumbled into tears. I called my mom and sobbed. She tried to understand my words through my broken tears.  Michael landed on his lunch break and I tried my best to explain what I had just heard and he cautiously said, we don't know anything yet. Maybe they didn't see something correctly.

May 30 (two days before the move): I saw a specialist and he confirmed that Josiah had Hypoplastic Left Heart Syndrome. Sigh. My energy was gone. I still had things to pack! My friends stepped up and packed the rest of our apartment. The specialist connected me to Dallas Children's Medical Center and I spoke with a lovely woman named Cindy, who was and is one of the sweetest woman I've ever met! She made an appointment for me to come in on June 12 for another fetal echo and she also connected me to a high risk OB.

May 31 (one day before the move): I spent one more day enjoying my family and trying to process the news. We got our things packed into the trailer that night, with the help of many friends and family, and I spent the night at my parents house.

June: June 1 was the big move. Our wonderful friends drove me down to Texas with all of our stuff and I fell into Michael's arms the moment I saw him. What a 3 days that I had had! June 12 was my echo, meeting with the social worker, financial counselor, tour of the ICU, and meeting with the cardiologist who explained everything in detail. I was thankful for The Lord prompting my mom to be at my side that day. She and my sister traveled down for that day and little did I know how much I needed them! I went back to Nebraska with them for 3 more baby showers and some final goodbyes.

July: Well, I guess it's official. I live I'm Texas now. Sigh. Mid-July, I finally came around to getting the nursery ready. It took me about 2 months to grieve the news and get myself to the point where I could see a future with this baby who I was carrying. I finally started in on nursery projects when my water broke on July 23! No! I'm only 31 weeks pregnant! I went to the hospital, where they admitted me and I stayed until my little peanut arrived. The stay was short lived because Josiah had plans of his own and came early.

August 3: Josiah was born! I got to hold him for maybe a minute when he was born and that was the most precious minute of my life. He was swiftly taken away and they started poking and injecting things into his tiny body to ensure he lived. I watched through tears as they did their initial things before whisking him away to the NICU. Michael stayed by my side. We both got a short nap until they brought me back to my room and got Josiah ready for transfer. Michael left on the ambulance with Josiah and I stayed behind. I'm pretty sure I tried to sleep, but as I was just beginning to learn, a good sleep does not come at the hospital! Michael picked me up in the afternoon and brought me over to Children's to see our baby. I held him for about 20 minutes. Our nurse, Curtis, kept shaking Josiah's foot and hand, saying he was getting "too comfy". Little did I know that that meant he kept not breathing. I handed him back. They put him back in his box and I looked at him until I went back to the hospital for the night.

August 4: I was discharged from the hospital and I spent every waking hour at Children's with my little man.

August 7: Josiah had his first surgery. It was not planned for that day, but he took a turn for the worse the night before, so they took him away. I held him once more and Michael got there just in time to hold him, as well. The surgery was successful and he came back with more tubes and wires than I could have ever imagined! It was awful seeing him like that. With all of my new mommy emotions, plus feeling the weight of all of this, it was too much!

The rest of August went pretty smoothly until August 27, when one of Josiah's lines got mysteriously pulled and we didn't know if we would ever get to take our little boy home. He was the sickest that I had ever seen him and the 2 days following were horrible. They placed a stint on August 28 and our little guy turned around.  September was all preparation for his big operation, as he just needed to get to full term and gain weight. Those were some of the best weeks we spent at the hospital! He was IV free, he breathed regularly on his own and I could hold him as much as I wanted!

September 24: Josiah's due date and Norwood operation. This was the hardest day of my entire life. Signing those papers and handing him off for this operation was miserable. His sweet little head was soaked in my tears as I handed him off to the anesthesiologist. It was that morning that I gave him to The Lord and gave away control.  His surgery was a success and it took about 3 weeks in the ICU to recover.

October 29: Home! Josiah is discharged for the hospital and we headed home!

November and December: Home is filled with days of snuggles and kisses to make up for lost time! We meet with therapists and go to clinic appointments and we rarely have a day free of appointments. There are times that I sit with Josiah in my arms and cry as I think of how special he is to me, how much he has gone through and how much he still has ahead of him.  Tears of fear, unknown, love...  It got to be about mid-December when I came out of this blur of a reality that we've been living. We really do live in Texas now. We really do live far away from family and all of our friends. I have these two boys that are my whole world and not many people get to experience them with me because everyone's so far away.

Like I said, it's been a full year! In the midst of this year there have been hardships. There have been decisions and days that have not been my favorite. There have been tough calls and tears. However, there has also been joy. There has been peace in the unknown. God has had control over this year.  He has control over every year. He knew that Texas was the best place for us, even if I didn't want to believe it. He knew this place...this place that is so foreign...so far from "home"...so far from everyone we love...this place would grant us life with our little boy. A life to be cherished.  A life where everyday is a miracle.

Tomorrow is the start of a new year.  I know that 2014 holds tears and fear of what's to come, but it also holds joy. Michael will graduate and start his job--one that he's been waiting years to start. Josiah will have another surgery, but that means that he'll be one step closer to living a better life. And I will continue to find my place in this new life that we are living. My place as wife, mom, nurse, cook, maid...

This was a full year, but a year that I wouldn't trade for anything because this is the year that I became a mom.

A New Perspective... Home

Ahh..Home sweet home!  I don't think anything is better than taking your baby home from the hospital!  Our almost 3 month hospital stay was long enough and we were ready to say "Adios"!  I'm sure every new parent has the overwhelming feeling of anxiety right when you get home with a baby and I felt it strong our first night home!  We hadn't been home for 3 months, our apartment was a disaster and our baby came with a list of "to-dos".  I didn't know where to start! How am I supposed to remember his medications and the correct dosages? Where are all of his necessary supplies? Let alone...when do babies go to bed?  Ha!  

About a week or so into our new home life, I picked up one of Sy's bed time books again.  This book brought tears to my eyes every time I read it to him in the hospital and it brought tears to my eyes again.  The book starts like this:

"I'll see you in the morning, for now it's time to sleep.

I will stay and watch a while, till you are counting sheep.

Don't be afraid of darkness, don't be afraid, my sweet.

The night is just a blanket that helps the earth to sleep."

This is the part that always got me--

"I'll be here if you need me, I'm only steps away."

At the hospital, I'd change the words to, "I'm only a phone call away".  It broke my heart every time.  When I read that line at home and got to say the words, "I'm only steps away", I was flooded with emotion.  I'm only steps away!  You're home! It's my favorite line in the book.

When we were in the hospital, I started reading "Baby Wise", as I have heard my sister rave about this book from her own three girls.  I think I got to the 3rd or 4th chapter when I put it down and realized, this doesn't relate to Josiah.  Schedule? What schedule? His schedule is that he eats every three hours on the dot and gets medicine every 6 hours.  The kid can sleep whenever he wants because he has that special skill of sleeping and eating at the same time! Although we would love for him to take a bottle, his feeding tube has become a bit of a blessing for us, as sleep deprived parents!  Instead of waking up every three hours to eat throughout the night, he sleeps 10-12 hours at night because food is just being pumped into his stomach for him!  Even still, we'll keep working with him to take a bottle. :)

That feeding tube has brought the attention of random strangers on the rare occasion that I do take him on an errand with me.  I've come to realize that I look at my precious baby and see him and only him.  When I go out, people see that tube coming out of his nose and wonder what's wrong with him?  While standing in the checkout line one day, one lady asked me how old he was and I told her that he was 3 months old. "Wow!" She said.  "He's small!"  Having a variety of things go through my head, I told her he was a preemie and came 8 weeks early.  She responded by saying, "Oh. So he's only 1 month old."  I politely smiled and turned away, all the while thinking, Noooo...he's 3 Months!  My little man had more done to him in those first two months of life than most people have in their entire lives!  Please don't take that away from him because he's small. 

It's interesting how we look at people.  We see their disabilities first.  But does anyone look at that disability and wonder how much that person has overcome? I'll be honest--I rarely did, if ever.  Having a baby with a disability changes that perspective.  My baby was born 8 weeks early, had 2 major surgeries on his heart and has a feeding tube because he's still learning how to eat.  That skill was taken from him when he wasn't allowed to try a bottle until he was 2 months old.  Now he's learning.  He's overcoming the obstacles that he's been handed. 

Bringing home a baby is a lot of work.  Bringing home a sick baby is A LOT of work!  But, we've found our routine and things run pretty smoothly around here.  It's wonderful to be home!  I've learned his meds and can now draw all of them up for the day in a 5 minute time span.  I get his milk ready in the morning. We have therapists come to our home and we go to weekly visits at the clinic.  It's rare that we get to spend a day at home with no one coming over, but we cherish those few days that do come our way.  I feel blessed to be a mom. I feel blessed to be a mom to my miracle baby.  He's a lot of work, but there's no work that could bring me more joy!  I think back on my years as a teacher and think of my love for that job and the families who I encountered.  Let me tell you, those days seem like forever ago!  I can tell that my job helped to prepare me for this stage of my life.  The different activities that were implemented in my classroom to develop physical skills, cognitive skills, social/emotional skills, and language skills.  These are all things that I work with Josiah's therapists on, except in baby form. :) 

We love being home and feel so blessed to make it out of the hospital!  I remember when Josiah was only 9 days old and we spoke with a fellow mom of a 3 year old daughter with HLHS.  She told us how great her daughter is doing and how she's thriving!  I remember her walking away and I broke down in tears.  It didn't feel like we'd ever make it to this moment.  But here we are, 3 months later and I can say that my little boy is thriving!  His cardiologist says he's perfect.  I agree.  He is perfect.  I couldn't be more blessed. :)

Roller Coasters

Ever since we’ve started this crazy journey, we’ve been told that life in the ICU is like a roller coaster.  For me, roller coasters are not my favorite.  They’re high in the air, they go up and down and they feel like they’ll never end.  I guess that’s a fair assessment of what life is like these days…except we stay on the third floor. J 

Michael and I tried our best to prepare ourselves for the big day when our sweet little peanut got whisked off for his huge surgery.  It’s safe to say that no amount of preparation could have gotten us ready for that day.  As I held him in my arms the morning of, I wept over him, wondering if I would get to hold my breathing baby again.  It finally came down to me crying out to the Lord and saying, “Alright God, you love him even more than me and your hands are even more capable than our surgeon’s…watch out for my baby today.”  It was about 9 hours later when I saw him again. He had a breathing tube down his throat; his chest was open with his tiny heart beating underneath and he was so swollen from surgery, but I breathed a sigh of relief because he made it! God brought him through!  Ahh..I let down.

The next couple of days following the surgery were great.  Josiah was doing exactly what he was supposed to be doing.  The doctors gave him a B+ for post-op behavior.  We were having fun at the top of that roller coaster!

But with all roller coasters, they have to go back down and that’s exactly what happened.  Josiah got his breathing tube out and things started to go haywire.  His left lung collapsed and I was talking to a team of doctors who I had never met before and more importantly, they had never met Josiah.  My mama bear came out and the need to protect my baby felt overwhelming.  Little things about my baby, which made a huge difference, were the things that I knew and had to speak up for.  There were days when I felt like it was me against the world.  I know that these doctors are capable and good at their jobs, but they didn’t know my baby.  I stayed at the hospital for 4 days straight, day and night.  By the end of the 4^th day, I looked at Michael and told him I needed to go home.  I need to get out of this place that has been draining me in every way possible.  Even though it was just a night’s sleep, it made all the difference in the world. The next morning, sedation medication caused our little peanut to stop breathing—3 times. Every two hours, his levels would drop and he needed resuscitation.  There is nothing worse than watching your child be resuscitated.  I’ve seen it far too many times in this ICU experience and it’s something that I pray we’ll never see again.  I pray that he thrives and his heart would keep up with him.

By the end of that week, his lung was inflated and working as it should.  Let me tell you, it felt like the longest week ever!  It’s crazy to look back at how the days have gone ever since Josiah was born.  There are days that feel like an eternity.  There is constant monitoring of his levels and fear of them dropping.  I don’t know if I should leave for the night since we’ve had such a scary day.  But it was all in a span of 14 hours.  A looong 14 hours!  Some of these days drag by and I wonder if we’ll ever go home and live a normal life?  All the same, I look back and realize that 2 months has flown by!  How did my baby get to be 2 months old already?  I feel like I’ve been cheated out of 2 months of his life because we’ve been stuck here.  I feel like we keep looking to getting him to the next step so he’s more stable and we miss out on his current cuteness.  Sometimes I think about how hard it was that he was a preemie because we spent so much longer in the hospital and he wasn’t even supposed to be here yet. He’s an 8 pound 2 month old and he should be an 8 pound 2 week old!

It’s hard to not look ahead when you’re staring at your baby’s open chest and hoping that it gets closed sooner than later.  It’s also hard not to look ahead when you’re not allowed to hold your baby.  I spent 5 of his 9 weeks of life just looking at him, holding his hand and giving him kisses.  I just waited for the day when I could pick him up and rock him.  All I wanted was the day to arrive that I could hold him!  I was looking ahead. 

Now that I can snuggle my baby, I want time to stop.  Hold on…let me catch up! Let me savor every moment that I get to hold him and feel his tiny 8 pound frame in my arms. Give me those 2 months back!

I feel like our roller coaster ride is going back up, but this time, we’re getting up to the platform where we exit this crazy ride.  That is my prayer!  Let’s not have one more dip before we leave the ride.  Josiah’s doing great and he’s making strides in the right direction!  Time to exit the roller coaster and figure out what life is like with a new baby…!

Feeling Motherhood

It’s been a while since I’ve written blog post about everything that we have going on now a days.  Since the minute our sweet little Josiah Michael was born, our lives have become even more of a whirlwind than they had been!  There have been so many emotions: fear, joy, anxiety, excitement…  I think that the one emotion I didn’t expect to feel was the lack of being a mom.  Being a mom is something that you just feel—it’s unexplainable.  For me, I had anticipated the day that I would have my little bundle and look at him with joy and peace. To sit with your baby and look with amazement that this little person was sown together inside of you and marvel at the complexity of everything that took place.  It took me about 5 weeks to get to this place of feeling like a “mother”. 

The other day, one of the ladies from the hospital asked me if their team had done a good job of preparing us for life in the ICU.  I looked at her and told her that that question was hard to answer.  I explained that the tour they gave and the information they shared was good, but it feels as though the emotion behind everything is impossible to convey.  Having never experienced motherhood before our little peanut arrived, all of the feelings of being a new mom surfaced, as well as the overwhelming emotions that I experienced of having him taken from me within the first minute he was born.  I went through painful labor to see my baby for less than a minute and have him be whisked away by the NICU team standing beside the bed.  I felt like Michael and I became a family of 3 for a split second and went back to being just “us” again.  Seeing your baby connected to wires and machines is something that no one can prepare you for. Being a mom meant that I had a little person who relied solely on me.  I gave him nutrition, I changed his diapers, and I rocked him and soothed him when he was upset.  None of this was true for the first few weeks of his life.  Although I provided nutrition, it is all very mechanical. I pump, put it in a labeled bag, hand it off to a nurse who then hands it down to the “milk bank”, where it is then mixed with formula for added calories and put into a syringe that gets pumped into his feeding tube.  Nothing about this promotes a loving and motherly picture.  I didn’t even change his diaper until he was a few days old because I didn’t know if I was “allowed” to.  When a nurse looked at me and asked if I wanted to change his diaper, I just wanted to weep because of course! Yes! All I want to do is to be a part of his life, even if it means changing his dirty diaper!  It wasn’t until he was about 6 weeks old that I got to help give him a real bath.  The nurses give baths in the early hours of the morning, when I’m at home sleeping.  One of the night nurses caught us before we left for the night and asked if we wanted to help with bath time before we went home.  I wanted to hug him!  There was nothing better than taking wires and stickers off of Josiah’s little body and watching him so peaceful in a tub of warm, soapy water.  I could actually see my baby under all of the wires that constantly occupy his small body.

I went for 3 ½ weeks without even holding my baby.  I touched his head, held his hand and sang him songs.  I asked the doctors every day for a solid week if I could hold him and the answer was always “no”.   I gave up.  I felt defeated.  Fortunately, there were two nurse practitioners who didn’t.  They still asked.  They knew it was important for both of us!  Finally, that day came and my sweet boy was placed in my arms again!  They told me that it was the day I had been waiting for-I would get to hold him!  I made sure that there was nothing I needed to do so when he was placed in my arms, I could just sit and enjoy.  That’s exactly what I did that day: sat and enjoyed him for 3 solid hours.  It was perfect!

There are so many privileges that get taken when your baby goes straight to the hospital. The nurses and doctors do a great job.  They are keeping my precious baby alive!  But…it’s so hard to stand by as a mom and feel as though everything has been taken from you.  To have to ask if you are allowed to hold your baby. To get to a place where it’s ok for you to change a diaper. 

Recently, a nurse asked if I minded if she changed his diaper.  Yes.  I’m sorry, but I do mind. I know that he gets terribly upset about diaper changes.  He needs his pacifier in between and I stop and give kisses mid change to calm him down.  His levels start getting out of whack during a diaper change and I know how to keep them steady.  This is your second day with him and you don’t know any of these things about him.  I have to let the night nurses change his diaper because I’m not here, so when I am here, this is MY job.  These were all of the things that raced through my mind.  A simple “No, I’ll do it please” seemed to suffice. 

Obviously, being a mom has finally sunk it and it is the best feeling in the whole world!  It’s also one of the hardest, as I’ve grown more and more attached to my precious boy and I will watch as he is taken away for this major surgery.  I’m not ready for him to be taken.  All I want is to be able to protect him and hold him and tell him that it will all be ok.  I must say again that I am SO grateful for the nurses and doctors who know what they are doing.  They are keeping my baby alive!  The nurses and doctors are doing what they know how to do and they are doing it well. I must also say that nothing about this situation is easy.  There is a balance to all of this and part of that balance is learning how to speak up on my part.  Knowing that it’s ok to ask questions and ask nurses if I can help.  Finding my voice in all of this has been hard, but crucial for my benefit and Josiah’s.

Beads of Courage

Here’s to something really neat that the hospital does for their heart patients!  Beads of Courage is a program that symbolizes all that these heart kids have had to go through.  Every time that Josiah has something done, he gets a bead for it.  There are 27 different categories for beads.  Things like getting lines placed, sleeping over in the hospital, getting echocardiograms or x-rays, tube insertions and removals, cardiac surgery, ventilator support, etc. are all things that Josiah gets beads for.  Josiah has accumulated 10 yellow beads because he has slept over in the hospital for 10 nights.  I know he will have many more yellow beads!  He has gotten over 12 light green beads for getting different scans and tests done—sometimes multiple times a day.

Josiah has only been with us for 9 days and this little fighter has already accumulated over 70 beads for all the things he has had to go through!  I’d say this little man is pretty courageous!  This is such a positive spin to the hard and painful things that our little guy braves each day. Keep on fighting, Josiah!  You are courageous!

New Parents

We’re parents!  Josiah Michael Bailey arrived on August 3 at 4:04 am.  He came at 32 weeks and 5 days--my actual due date was September 24!  Josiah weighed 5 lbs 2.9 oz and measured 18.5 inches long.  The doctors have been very impressed by his size for how early he decided to enter into this world! 

Josiah is now 6 days old and it feels like we have lived in a giant medical bubble for those 6 days.  Michael and I were talking about our little guy last night and I mentioned that he was only 5 days old and he was stunned that so much has happened within 5 days!

Michael and I are thrilled with our precious little boy.  The labor went quickly and once Josiah arrived, I feel as though things just haven’t slowed down.  Josiah was placed on my chest for about 30 seconds when he was born and Michael got to cut the umbilical cord.  This was so special that we got to have one “normal” aspect of delivery.  After that, the NICU team was quick to take Josiah and start placing tubes and lines in him.  The team at St. Paul worked with him for about 2 ½ hours.  They put a tube down his throat to help with breathing and placed a central line in his belly button to give the necessary meds for his heart.  Almost every appendage on our sweet little boy has wires or needles connected to him.  After that 2 ½ hours, the transfer team from Children’s came to pick him up.  They brought him to my room so I could see him and hold his hand before they whisked him away.  Michael was able to ride in the ambulance with him and he stayed with Josiah while I was still recovering from labor. 

Since that time, we have spent our days at Children’s Hospital.  Michael, of course, had to go back to work on Monday, but I am at the hospital from about 6 am until about 7 or 8 pm most days.  We have known that we would be spending time at the hospital for about 2 months now, but to actually experience it is a completely different thing!  Josiah had some problems breathing on his own the first few days, as he is a preemie and is still figuring out how to breathe consistently.  He had a couple of really good and stable days until his levels dropped one night and his kidney levels rose due to lack of blood flow.  On Wednesday, August 6, the doctors decided to go ahead with the Pulmonary Artery banding surgery—that day!  My mom was here visiting and we went down for breakfast and when we came back up to the room, the surgeon came in to tell us they would like to proceed with surgery that day—in about an hour or two!  As a shock to the system, they whisked our little boy off to surgery.  Thankfully, it was a success and Josiah did great!

We are now on day 2 following the surgery.  I know our Sy is a little fighter!  The doctors are continuing to try and find the right amount of medicine and ventilation for our little man to find the right balance of levels.  Since he is so small, they tell us that time is what will make the difference for him.

Day by day and minute by minute is how we are getting through this. There are so many ups and downs that I feel exhausted most of the time.  I know that we have a long road ahead of us, as we have only endured one surgery and we have at least 3 more to go!  Our sweet little boy is such a trooper and it kills me that I can’t pick him up and cradle him in my arms when his face is filled with panic after waking up and knowing his little world has already been rocked.  I know that we are receiving the best care possible and I am so thankful for the medical staff at this hospital.  The nurses, doctors, residents, fellows, students, nurse practitioners, surgeons, etc. have already played such a crucial role in Josiah’s life.  

Gratitude

After having a day yesterday that I felt so down, I can feel the prayers radiating around me as I’ve woken up today with a happier spirit.  Yesterday felt like a vicious cycle of having an IV in my arm, getting it out for a couple of days, only to get stuck with another one when contractions start back up.  I woke up in tears, cried when my doctor came on her rounds, and on the phone with my sister.  Days like that are the ones that I just don’t feel like myself and I felt as though I didn’t have the strength to last this hospital stay.  I was holding myself together when my doctor came into the room and when I asked her about taking out my IV, she gave me an immediate yes and I burst into tears. (Probably not the reaction she was looking for). I never realized how draining it can be to have something stuck in your arm for days, especially when every move I make hurts.  I am so thankful to be free of that stinky thing for another day!  I have been drinking water like a fiend so I don’t get dehydrated and get another IV!  When my hubby stayed the day with me on Sunday, he stuck my straw in my mouth every chance he got so I could stay hydrated.  He cares. J

I must say that after a day like yesterday, I am so thankful for our prayer warriors! God is using many people in our lives (and some people we don’t even know) to lift us up during this trying time.  I am continually humbled by the people here in Texas who have been so gracious to us and we just met most of them!  We have dinners provided for us this whole work week, which is a huge relief!  Things get pricey pretty quick when you’re living out of the hospital and people have been so kind!  Our window sill is loaded with snacks that we can munch on. Our fridge is full of lunches and dinners that we can eat when we need a meal.  I received 2 cards in the mail today and one beautiful bouquet of sunny flowers.  I feel like God is wrapping me in His arms during this very emotional stay because of all the people He is using to support us!

Of all of the things that I could’ve read today, I landed on 2 Corinthians 8, which speaks to generosity.  The beginning of verse 12 says, “For if willingness is there, the gift is acceptable according to what one has.”  Meaning: what matters is that people are willing to give, regardless of what it is that they can give.  I have seen that so much this past week and am so grateful for the generosity of people surrounding us during this time!  Whether it’s been a visit from a new friend, a meal for me and Michael, or just the continuous text messages that I get from friends who are far away; people have been giving above and beyond and we are humbled and so grateful for all of the support!

Home Away From Home

Well, if this makes any sense, I feel like I’m in a home away from home away from home!  I already felt as if I was missing my “hOmaha”, but now I’m stuck in the hospital for the next possible 6 weeks until I deliver, making me miss our actual home!  I really don’t know how to describe what I’m feeling, as I’m sitting on my hospital bed.  I have a small sense of comfort for the fact that I’m surrounded by people who are keeping an eye on me and Josiah, but there’s nothing “homey” about a hospital room, hospital food, nurses and doctors who come in to check on you every couple of hours (if not more), etc.!  For those of you who have been in the hospital long term, I’m sure you get it!  AND…this is only day 4!

I must say that I am SO blessed to have the BEST husband ever!  He has been such a trooper!  He sleeps in my room with me every night and he hasn’t been home since Tuesday, himself!  Even though he has tough 12 hour days, he is still getting me what I need in the middle of the night, he gets interrupted sleep when people come into our room, and he does it with such grace and compassion!  I find myself crying when he comes “home” and he simply holds me in his arms and tells me things will be ok.  He’s taking on a job that’s tough and doing it with skill, while being the stable ground for me.  Seriously…what a guy!

I feel as though there’s nothing major to report on the baby front.  Little Josiah is active as ever, just in a slightly more squished space.  They did an ultrasound the other day and I couldn’t believe the difference from 3 weeks before!  The amniotic fluid makes things seem so much more comfy for the little guy and now he barely has any!  It makes me feel so sad for my little squishy, even though the doctors say that he’s fine.  I haven’t been having any contractions and I’m not hooked up to any machines anymore.  They monitor his heart beat and my possible contractions for 30 minutes to an hour each morning and then I’m free for the day. I’ve always been pretty nervous about needles and all things medical, so it was a huge relief to get that IV out of my hand yesterday!  They take my temperature and blood pressure every 3-4 hours to make sure I’m not getting any infections. 

I am humbled by the amount of support we’ve received.  Michael and I have felt so loved by so many over the past few days.  Even though most of you are far away, the messages and notes of encouragement have been wonderful.  Someone wrote to me, “Know that so many prayers are going up on your behalf that I have no doubt you will feel God’s presence during this hard time in ways you never have before.”  That is so undoubtedly true!  There are many things that Michael and I are trying to figure out about our new situation and it seems as though God is working these logistics out for us.  Michael’s new coworkers and our new friends have been nothing but supportive and helpful during this time.  They are constantly asking how they can help.  Thank you for all of the support during this time! 

This Really is God's Plan...

Here’s a major prayer request coming from the Bailey’s.  The subtitle of this blog continues to ring truer and truer each day.  This plan is really not our own---God continues to make us look to him daily and say, “Alright, we thought this couldn’t get any harder, but all we have is faith, especially at this point.” 

This post is hard to write for a variety of reasons.  The first reason is that I have an IV in my wrist and a thing on my finger making it hard to type and the second is the unexpected reason that I have those things.  Unfortunately, my water broke this morning at 4 am. I am only 31 weeks pregnant, so this was definitely not in our plan.  The doctors have me on antibiotics, steroids, and sedatives to keep labor at bay.  The steroids help little Josiah’s lungs develop faster since he is now at risk of being a preemie, on top of everything else.  The NICU nurse practitioner came to talk to us about everything that will happen now that we may have a pre-term baby.  When he is born; if sooner than later; they will check his lungs first to see if they are mature enough to keep him stable. If they are not mature enough, they will insert a breathing tube and put additional steroid medication though that tube to help his lungs develop.  He will also get his IV through the umbilical cord started right away to get the PGE started to keep that hole in his heart open!  It all seems to be a big question as to when that first surgery will be.  Originally, it would have been during the first week of life, but if he is a preemie, it will be delayed. They need to get his other systems up to working order before he endures heart surgery.

The sedatives are to keep my contractions at bay.  Contrary to popular belief, just because my water broke does not mean that I am in active labor yet.  I have only had a few slight contractions and when those popped up, I was given a sedative to make them slow down.  Now, while I am grateful for this medication to keep our little man inside of me as long as possible, it is not an ideal medication because it literally knocked me out the second it was given to me.  I fell asleep for about 4 hours when I was given the sedation.  I do like to sleep, but I’m not a huge fan of being knocked out constantly. :/

Here’s the current game plan:

·         STAY PREGNANT AS LONG AS POSSIBLE!

·         Live in the hospital until I am not pregnant anymore

·         Get Josiah as big as possible before he decides to make his grand debut.

·         Keep Michael focused on his work during this crucial time.

Obviously, that game plan brings up huge prayer requests!  We love all of our prayer warriors and thank God for putting you in our lives!