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!

Baby Burp Cloths

With the spare time that I have on my hands these days, I decided that I needed a weekly project.  This week: burp cloths.  It was super easy and it helps us get ready for our little man! Bonus!  Here’s the rundown of what I did:

First, I had to gather my supplies.  I went to Babies R’Us and got 2 packages of burp cloths.  They were on sale for buy one, get one 50% off, so I got 8 of them for about $10.  Then, I headed across the street to Jo-Ann Fabric and bought a couple of fabric squares and 3 spools of ribbon. You’ll see that one of the burp cloths has the same fabric as the crib skirt—I had some extra and I thought it was cute, so why not?!  I had thread on hand, so I didn’t need to buy any of that!  I washed all of the burp cloths and fabric before I started in on this project.

Next, get out the iron because I found that it was a very handy tool for this project!  I cut the fabric down to size and ironed away.  I folded the fabric in half and ironed on the fold.  I stuck the burp cloth down into the fold.  I folded the fabric around the edges and I folded it down on the top so there wouldn’t be a messy line on top. Iron all of these folds!  After the ironing, I pinned them all into place.

 

Take the ready to go burp cloth to the sewing machine and sew all the way around the edges.  It was an easy sewing project because it was a straight line all the way around. 

After the fabric is sewn into place, I cut a piece of ribbon and sewed that on the top, where the fabric meets the burp cloth.  I folded the ribbon in on the edges so I wouldn’t have frayed ends when it gets washed over and over.  I sewed the ribbon on the top and bottom because it gives it more of a finished look. 

And ta-dah! A finished burp cloth!

Change

Change is a funny thing, isn’t it?  Life all around us is changing at every moment, but we don’t necessarily take the time to notice. Kids keep growing, jobs keep progressing; skills are being learned.  Anyone who knows me well knows that change is not my favorite.  When I say that it’s not my favorite, I usually resist change with all of my power.  I get mad and cry and try not to let it happen. 

I remember when I interviewed for a job right after high school and I didn’t get it.  I was the top three for the interview process, which to this day boggles my mind because this job was WAY out of my skill-set, but they saw something in my resume.  They called to tell me that the hired someone else and I was so discouraged!  I got a retail job instead and 2 months later, that same company called me back to say they had a different position if I was interested.  I took the job, meaning that I had to quit the retail position that I had been in for one month.  This new job was perfect for me!  I was a receptionist and I loved it!  Funny how God can take a discouraging piece of our lives and when we wait it out just a little bit, He can show us something so much better!

Change seems so easy when it’s change for the better.  Change can also seem so hard when the change doesn’t necessarily go our way.  It’s funny because this move to Texas is the biggest change that I’ve ever experienced in my life, yet I really didn’t fight it.  For whatever reason, I took the news of our move with a grace that I didn’t realize was in me.  I remember when I “had” to move into my grandparents’ house for a few months back in college and I fought my parents so much about it!  I didn’t want to leave my space and live all the way across the street!  What happened? I loved living with my grandparents!  It was great!

I’m beginning to learn that although change can be very hard and discouraging, there’s usually an up-side.  Just wait. God will reveal something better.  This big change to Texas definitely has its up-sides.  Michael has a job that he loves!  I love hearing him talk about a job that’s hard, yet a place where he finally feels that he’s found his calling.  For the first time in a long while, he talks about a job that he’s excited to go to in the morning.  We’ve found a church that we really like.  We still don’t have the relationships that we had at our home church in Omaha, but that’s starting to come. 

Shauna Niequist writes in her book, Bittersweet, “You know this doesn’t happen over and over in your life.  You don’t get that many experiences of friendships like the ones you all share.’ But I think we wanted to believe he was wrong, and that friendships like these would pop up all over our lives like dandelions.” 

This is such a hard aspect of this change!  We loved the friendships we left in Omaha and I pray that we can experience true friendship in our new home.  We’ve never been the “newbies” in a place before, so it’s been an interesting turn of events for us.  I now know what it’s like for someone new to come into a new city and watch others with their already developed friendships.  It’s hard.

Shauna writes about change in her book and I think she describes changes so well! 

“I know better than to believe that the changes are over, and I know better than to believe that the next ones will be easier, but I’ve learned the hard way that change is one of God’s greatest gifts and one of his most useful tools.  I’ve learned the hard way that change can push us, pull us, rebuke and remake us.  It can show us who we’ve become, in the worst ways, and also in the best ways.  I’ve learned that it’s not something to run away from, as though we could, and I’ve learned that in many cases, change is not a function of life’s cruelty but instead a function of God’s graciousness.”

Change is a funny thing.  It’s scary and new.  I went back to the recovery group on Thursday night and I listened to stories of women who have all experienced change that they would have never placed in their lives.  One thing stuck out very loud and clear through their stories.  As they were dealing with these scary changes, the majority of their marriages took a turn for the worst.  I couldn’t help but leave and think, “Thank you, God, for your graciousness to keep Michael and I connected through the midst of all of these changes.”  That is our continued prayer, that as our lives continue to change, that our marriage would thrive and we’d become closer than ever.  The next year will only continue to get harder, but I know that God has a plan for all of these upcoming changes.  Our lives are completely in his hands.  These changes are going to send our lives into waters so deep that we’ll only have our faith to keep our heads above the water. God knows.

-Carrie

Baby Fun

With all of the posts about Baby Boy’s heart condition and our overwhelming move, it’s time for a good ole’ happy baby post!  We've started to get the nursery set up and it’s so fun!  I find myself going into his room to just sit and look at all of the cute things!  We've decided to go with a giraffe/safari theme, so things are coming together pretty quickly.  Michael and I both had a tub full of beany babies, so we dumped them all into a basket for baby boy to play with when he gets a little older.  Oddly enough, we really didn't have too many duplicates. J  We got the swing set up last weekend. (When I say “we”, I mean Michael put it together, but I watched).  We also got the crib set up.  I decided to make my own crib skirt for the crib because I couldn't bring myself to spend $40+ on a crib skirt, when I could make one myself.  This also allowed me to get a fabric that I really wanted for his bed.  We also purchased our first box of diapers.  I planned on stock piling diapers a while ago, but with the move, they just got put on the back burner.  I must say—little teeny tiny baby diapers are just the cutest!

Now, with any new baby, the big question is: What’s the name?  Originally, Michael and I decided that we would save the name for a surprise once he’s born.  However, with the diagnosis of his little heart, we decided that our little boy deserved his name before he entered this world so people could pray for him by name.  We have had this name since we first got married over 5 ½ years ago.  Michael has liked the name long before we got married, so it worked out nicely that I loved the name as well.  His sweet little name is Josiah.  It means Jehovah Saves, which reduced me to tears when I looked it up before my first appointment with a specialist. It was amazing to see that this name was truly set on our hearts for this little boy.  I don’t think we could have given this little boy a more perfect name.  We are still deciding on the middle name, however we are almost 99% sure that we have a middle name figured out.  I’ll wait on the middle name to keep you all in suspense. J 

I've posted a couple of pictures of the things we have set up in the nursery.  Enjoy!

Baby Update

I had another visit to Dallas Children’s Hospital, which included another fetal echo and a meeting with the cardiologist.  She explained the three surgeries to me again and what to expect once he’s born.  Here’s the summary of our initial time in the hospital, including the first surgery.

The left ventricle is still measuring too small.  This means that the right side of the heart is doing all of the work.  It means that the blood flow goes a different route than a normal heart.  Something they are keeping their eye on is the PDA hole, which is still open and looking good. The function of his right ventricle looks healthy. The valve on the right side of the heart is leaking a tiny bit, but at this rate, that is not a concern.  If this leak gets worse, he’ll have problems later.

Since we are having all of these additional ultrasounds and echoes to look at our little man's heart, I asked for a picture of his heart.  Here are two pictures.  One shows the whole heart and the second is the same picture circling the hypoplastic section of his heart.

At delivery, things should look similar to a normal birth.  Depending on what he looks like when he comes out, they will clean him and wrap him up next to my bed.  There is a possibility that I will be able to hold him at that point, but that all depends on how he looks when he is born.  If he is bluer than they expected, they will take him quicker. After that point, they will take him to the ICU and check him head to toe.  They will start the medicine PGE (Prostaglandin) to keep the PDA open in his heart.  This allows the oxygenated blood to get to his brain, kidneys, etc.  After the medicine is started and he is stable, he will ride in an ambulance to Children’s.

Once he is at Children’s, they will do another assessment, head to toe.  They will do a head ultrasound and a kidney ultrasound.  Problems with the brain and kidneys tend to go with heart problems, so they make sure that everything is looking good before surgery.  They will do several detailed echoes of his heart.  They do several so they make sure they can get all of the details possible.  After all of this, he will have his first surgery during the first week of his life.  They want him to be in the best condition possible for this surgery. 

After this surgery, they have us adhere to “sternal precautions”.  Since they cracked his chest open, we cannot pick him up under the armpits, like other babies.  We will do more of a scooping motion under his butt and back to pick him up. This is for 6-8 weeks after each surgery.  After the 6-8 weeks and the doctors feel like the bone is healed, we can pick him up under the armpits.

After they have his levels where they want, they begin to work on eating.  Something I didn’t realize is that he will not get his feeding tube until this point.  He will have an IV until the surgery (and a little after) that gives him nourishment.  When he gets his feeding tube, they will slowly drip in food to get his stomach and intestines used to having food. They will save my breast milk in the order that I pump so he is getting the first milk to the most current. When we get transferred to the 8^th floor, which is out of the ICU, a speech therapist will help him learn to eat.  How does that work, you ask? They use different kinds of support for his jaw, look for different cues on when he wants to eat vs. doesn’t want to eat, and they practice giving a little pressure on his tongue.  I will also be taught these methods so I will be able to feed him with a bottle. 

Before we go home, we’ll get a scale to weigh him daily, a pulse ox to check his oxygen, and a binder to keep everything written down.  We will also get the number of a nurse practitioner and doctor, who we can call 24/7 with any questions.

Once we’re home, we’ll have weekly cardiac visits.  We’ll have periodic echoes. What does being at home look like?  Will I ever be able to go out with him?  Most families stay home a lot during this time period.  There are the normal newborn precautions, plus some.  Wash hands; don’t let anyone who’s sick come over, etc.  Church is a big precaution because people like to touch babies and see them.  Put a blanket over the carrier and let people glance, but not touch.

Developmentally: any children who goes into the hospital, even if it’s just something like asthma, can have developmental delays.  He has several risk factors for developmental delays. The first is now, even in utero, his brain development is different because of the different circulation that his heart has.  Since the blood in his heart is routed differently, that causes different brain development.  Doctors have noticed that even before the first surgery, these babies have different development in their brains.  This puts him at risk for being behind in speech, being behind in motor skills, and typically being behind in math skills.  The good thing is that doctors know he is at risk, so they already have the right people lined up to help him developmentally.  Also, ADHD is sometimes associated with this.  With all of this said, there are still kids with HLHS who are completely normal.  He will have therapy from the very beginning.  He will have an OT (occupational therapist), PT (physical therapist), and speech therapist. He will have these people as long as he needs it.  After the second surgery, they can be much more aggressive with therapy if he needs it.

This is the gist of our first few months with our sweet little guy.  Feel free to email me if you have specific questions regarding anything.

-Carrie

Raw Truth

It has now been a little over a month since we found out the news on our little bean.  During this past month, I've been flooded with overwhelming doctor’s visits loaded with information on his condition, I've traveled back and forth from Nebraska, all the while moving down to Texas, and I've tried to adjust to the fact that I no longer live in a place of security and comfort.  In the midst of everything that has happened over the past month, I've completely shut out the one source of truth from my life because it’s been too painful to face God.  In fact, with everything that has been going on, it’s been pretty easy to turn away from my daily routine of reading my Bible.  I've had so much going on, it’s been a whole lot easier to do fun things rather than actually think about this new reality.  It’s hard to read my Bible and pray when it’s through tears of pain.  The cold and hard question of “Why?” keeps resurfacing.  I can’t make it through a church service without tears because I’m hearing God’s truths, but they seem so distant.

I've started reading the book, “One Thousand Gifts”, given to me by my Aunt.  I think the author of this book puts words to my feelings much better than I am able to get out:

“No, God, we won’t take what You give. No, God, Your plans are a gutted, bleeding mess and I didn't sign up for this and You really thought I’d go for this? No, God, this is ugly and this is a mess and can’t You get anything right and just haul all this pain out of here and I’ll take it from here, thanks.” (One Thousand Gifts, pg. 14) 

There’s some true honesty.  It’s so easy to feel this way when life deals a hand that I feel like I just can’t handle.  Why did God bless us with this baby…a baby that I've longed to meet for such a long time…a beautiful piece of myself and my husband…only to give this precious child a painful entry into this world?  Not only a painful entry, but a life filled with struggles and trials that I’ll never know what he’s truly going through.

When I think about the words from the book, there are parts that truly express my grief and pain, but would I really take it from here?  No.  No, I wouldn't.  Even though I have no idea why God would move us to a new place with a new job that is more encompassing that I ever imagined and to top it all off, our sweet baby who is due in less than 3 short months will be born with a heart defect.  Why would God place all of this on us all at the same time?  As Ann writes, “There’s a reason I am not writing the story and God is.  He knows how it all works out, where it all leads, what it all means” (pg. 21). 

This week, I've decided to face God again.  I’m not going to lie, it’s been painful and tear filled.  His truths have been ingrained in me, but it hurts to read them during a trial.  I've come back to 2 Corinthians. 

“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.”  2 Corinthians 4:17

I read this and look at those two words: light and momentary.  Really?  This doesn't feel light or momentary!  This feels heavy and sentencing!  But, seen from the perspective of eternity, the things that Michael and I are currently faced with ARE light and momentary.  Yes, Baby Boy will deal with this condition his whole life, but its life that we get to experience with him!  I don’t know how long his life will be.  I don’t know what God’s plans are when he’s born.  I don’t know if he’ll beat all the medical odds and live a long, happy life where he gets to see our end, rather than the reverse.  I don’t know God’s plans.  What I do know is that this plan that’s unfolding before us is for achieving eternal glory. 

I've realized a few things during the whirlwind of this past month.  One: if we had stayed in Omaha, it would have been much easier to go to others in our lives to talk out our pain and anger.  Being in a foreign place has made us rely more on each other.  Yes, there are cellphones and Skype available, but that’s not what has happened.  Two: we still hardly know anyone in this city!  With that being said, I have a lot of free time to read my Bible and really think about what’s happening.  It’s taken some time to get to a place where I’m ready to face it, but I’m finally there.  Three: does God give us more than we can handle?  Yes!  I feel like this is way more than I can handle!  But, it’s so I eventually come running back to Him. I can’t handle this situation on my own, nor can Michael.  We need to pray for God’s all-surpassing power.  I don’t want to think about upcoming surgeries, medical bills, long days in the ICU, etc.  It’s all so overwhelming.  But, God has a plan.  I need to start relying on that truth.  God’s plan is better than mine, even when it feels like it isn't. 

“So we fix our eyes not on what is seen, but on what is unseen.  For what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18

This whole experience is temporary.  The wait to meet our baby boy will soon be over when he enters this world.  Then, the long days and nights in the hospital will be temporary.  Does it feel that way now? No, but someday it will.  Fixing my eyes on the temporary will cause me to lose heart.  Fixing my eyes on the unseen, which is no less real for being invisible, are eternal and imperishable.  This is where I need to fix my eyes. 

-Carrie