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

Some "Firsts"

It was a great week “back” in Omaha. However, I really didn’t feel like I left since I was only gone for about 12 days.  It felt more like a vacation than a move. When I moved at the beginning of June, I knew I’d be back in Omaha for a little over a week, so moving didn’t seem so hard.  Now I think of all of the friends and family that we’re leaving behind and how hard it was be to say goodbye!  I’ve felt very blessed over the past week by the baby showers and new items for our little guy.  We are well on our way to having a well-stocked baby. J 

I have also felt immensely blessed by everyone in Omaha who is praying for our little guy and our new life.  As great as it was to be back in Omaha this week, it was overwhelming all the same.  Rehashing the details of Baby Boy’s condition is hard and there are nights when it all hits me.  A worship song stuck out at church and as we sang the song, all I could think about was our little boy. This is Hillsong, “God is Able”:

“God is Able

He will never fail

He is almighty God

Greater than all we seek

Greater than all we ask

He has done great things

Lifted up, He defeated the grave

Raised to life, our God is able

In His name, we overcome

For the Lord, our God is able.”

Again, I must say how different worship songs have a completely new meaning to me as we are faced with this trying new circumstance. 

Now that I’m back in Dallas—for good this time—it has definitely sunk in that I’m here. :/  If that makes any sense?  It’s much more real knowing that we have no trips planned back “home” for at least a year.  With our baby boy and all of his upcoming medical conditions, there is no way that I’ll take him on a road trip!  You know what that means?  Ya’ll need to come down our way to visit! (You like that Texas accent!?) 

This week has already been a week of “firsts”.  Moving to a different state is truly the biggest first of them all!  I also shaved Michael’s head for the first time!  We have always counted on our tried and true friend, Leslie, for those things, so the baton was passed to me!  It turned out pretty good, although a little closer around the ears than it should have been.  His hair is so short that you can barely tell. :)  Let’s see, I had to wax my own eyebrows.  Although this wasn’t a true first, I haven’t done it since high school and I need some practice!  I drove in true Dallas traffic by MYSELF for the first time.  I made it to my doctor’s appointment by myself and then to the grocery store and back home.  I did wind up in the airport toll booth area at one point, which was not where I needed to be, but I got out of there and the lady at the tollbooth didn’t make me pay for the 2 minutes I was in there trying to figure my way back out!  I don’t know if I’ve ever used valet parking on my own, but I did that too.  The hospital has valet parking at most entrances, so instead of paying to park in the garage, I’ll pay someone else to park for me. :)  In Dallas heat and the fact that I had no idea where I needed to go, I’ll leave my car with someone who can park it for me!

I also met my new doctor for the first time.  I had my first appointment with my new OB/MFM (Maternal Fetal Medicine) doctor on Tuesday.  They started out with an ultrasound.  Baby Boy is looking good.  He weighs 2 lbs. 11 oz.  He is currently in the 75th percentile.  Whoa!  I’m glad that he’s growing big and strong for the plain and simple fact that a big baby does better in surgery when he’s born.  Keep growing baby boy! As always with ultrasounds, he didn’t cooperate the way they wanted him to.  Once again, he was in the wrong position to see his heart and they couldn’t get a profile picture of him for me because he was looking straight at us the whole time.  The little stinker is also in a breech position currently.  His little feet are dancing on my bladder most of the time.  Let’s pray that he turns in time for delivery!  They also saw some fluid in his kidney; however, they said that was normal.  Something that I really liked about this ultrasound is that the ultrasound tech did the initial view, and then an ultrasound doctor came in to explain things as she went over the ultrasound again.  In the past, my doctor would just go over the ultrasound in the appointment, rather than talking about the ultrasound while we were actually looking at the baby. 

After the ultrasound, I went into a consult room to meet my new doctor.  We chatted for about 30 minutes and she answered several of my questions about delivery, appointments, etc.  She explained that she wants the delivery to look as normal as possible with me having a normal delivery (not a C-section), hopefully laying him on my chest as soon as he’s born, and daddy being able to cut the cord.  All of this depends, of course, but that is what delivery of these babies typically looks like.  She said that his incubator will be set up next to my bed, so he’ll be getting checked over right next to me before they transport him to Children’s.  We discussed the possibility of getting an amniocentesis, which she said is completely up to me and Michael.  They didn’t see anything abnormal in his ultrasound and she said they wouldn’t even do the amnio until 38 weeks because there is risk of early delivery and water breaking.  She didn’t want to put me at that risk until the very end when Baby Boy is more stable.  I really liked my new doctor and I think she’ll be great!  I go back in two weeks for another appointment with my MFM and another Fetal Echo at Dallas Children’s. 

Hopefully some more firsts will come for Michael and I this weekend with meeting some new friends!  We are trying to get into a “home group” at church and we hope to meet with a group on Sunday.  Pray for good connections and that the group is meeting on Sunday for us to meet them!

-Carrie