Monday, December 5, 2011

6 Months Pregnant and Wiser

We are 26 weeks and 4 days pregnant, which is 15 days further along than we were when Jonathan was born (yes, this is how I measure my pregnancy - by how much further we are this time!).
24 weeks pregnant with current baby boy.

23 weeks pregnant with Jonathan.

I am going through some new things that I didn't get to with Jonathan, such as maternity pants becoming too tight; stretch marks; forceful kicks to the bladder; becoming easily winded; drinking disgusting liquid for a glucose test (that's tomorrow so technically I haven't experienced it yet but I hear it's unpleasant); and weighing more than I ever thought I would.

Because of all this, it's common for women in my stage of pregnancy to start to phase out of second trimester bliss and into third trimester misery.  I am susceptible to that, but I just read a letter written to a preemie named Charlotte by her mom, and it hit me hard (you can read it here).  How can I possibly complain about this?  Have I already forgotten the sleepless nights, the constant burden of having a baby who was born too small and too soon?  Is it possible I don't remember the weight of knowing I couldn't just take my baby and go home, yet somehow I was expected to take care of myself?  I have been so caught up in life as I now know it, that the horrors of the NICU seem like a distant memory; carrying my newborn around as he is connected to a continuous flow of oxygen and strapped to make sure he is breathing and his heart is beating is a faint memory.  I hardly remember the hours of physical therapy we have been through - some of it so strenuous that Jonathan would cry for 20-30 minutes straight while the therapist tried to teach him the most basic developmental skills that came unnaturally to him because he spent so much time laying flat in the hospital.

How dare I take one second of this pregnancy for granted; how could I possibly complain about any of this?  God was (and is) so good - He brought our baby Jonathan through what seemed like certain death and he is the light of our lives.  And now God is giving us another great gift by allowing our second son to stay safe inside of Mommy where he should be.  And if that makes me uncomfortable then so be it!

It's sad that after all we've been through I can so easily forget that pregnancy is nothing compared to the nightmare that is prematurity, and I am not exaggerating.  But this is my wake-up call and I will not complain.  I lost the privilege to be one of those complaining pregnant ladies who says, "I can't wait to get this baby out,"; prematurity stole it from me just as it stole the joy that comes with having your first baby; I was robbed of being wheeled out of the hospital with my newborn and everyone telling me "Congratulations!"  Instead, I couldn't bear to open my eyes to see the birth of my son - I felt ashamed and saddened that he was born; people gave me weird looks as I was wheeled out of the hospital with flowers and "It's a boy!" balloons, but no baby.  No matter how thankful I am for our son Jonathan, I would never want to endure that situation again.

Now it looks like I will get that chance to have a "normal" pregnancy.  We have 3 more months to go, and I thank God for every day I get to experience.  And I recognize I wouldn't realize the brightness of this gift if it weren't for the darkness I experienced by it being taken from me.

Wednesday, November 9, 2011

My Prematurity Rant

I usually don't get caught up in "celebrity" stuff, but being Prematurity Awareness month I can't hold my tongue. 

Michelle Duggar (of the TLC show 19 Kids and Counting) is pregnant AGAIN.  She had her last baby at 25 weeks due to severe preeclampsia (read about her last pregnancy here).  She has an estimated 60% chance of developing that condition again with this pregnancy, to which the only cure is delivering her baby; so she has a 60% chance of having an extremely premature baby, who in turn has a high chance of not surviving, or suffering from life-long medical complications (read about extreme prematurity here). 

As you probably know, I had an extremely premature baby last year (at 24 weeks).  Doctors are still not positive why he came so early, but they think it was due to an infection of the amniotic fluid, or an incompetent cervix.  I had a surgical procedure to strengthen my cervix (I am currently 22 weeks preggo and holding strong!), and I am being monitored for any infections or signs of preterm labor.  In short, although I had one preemie, the odds are not in my favor of having another one (unlike the Duggar baby  machine).  I'm saying this to qualify myself as someone who can speak her 2 cents.

You may be asking "Why does it matter if she has another one?"  Well, for one thing, the nature of preeclampsia is so dangerous, that seeing as she already has 19 kids and 2 gandkids, it is an extreme risk to impose on herself and her unborn baby.  Along with the stress on the rest of the family that accompanies having a baby in intensive care, preemies as early as hers is likely to be have medical problems that last long after hospital discharge.  My son Jonathan, for example, is 16 months old and is still undergoing physical therapy; breathing treatments; brain MRIs every 6-12 months; and monthly vaccinations to protect him from a common cold virus (RSV).  And he is considered a 24-weeker miracle!  Many babies born before 28 weeks have all these problems but to a more debilitating degree.

In addition to the health risk to her and her baby, a preemie costs a lot of money.  I am sure the Duggars' insurance and money from their TV show is sufficient to pay any hospital bills, but taxpayers can still end up footing at least some of the bill  Any baby born below 1200 grams automatically qualifies for disability under SSI and receives Medicaid during and for up to a year after their hospital stay.  NICUs are expensive places:  Jonathan's total bill was over $1,000,000, and he was only there 4 months!  (I say "only" because there are many babies, some born later than him, who stay much longer).  If you continue to qualify for Medicaid after discharge (which baby Duggar may or may not), it pays for all medical treatments then, too.

In short, considering the tremendous burden she is putting on her body, plus the cost of having a preemie and the health risk she is running with her unborn baby I say why take a chance on having another unhealthy pregnancy and birth?  It is not fair to the baby, knowing that he or she may have to fight for their life for months in a hospital.  It isn't fair to ask your family to sacrifice and go through the horrible NICU experience again.  In some cases, having a preemie is preventable, even if that means you just don't get pregnant anymore.  Having a uterus does not mean you should use it!

Side note:  I realize there is a chance she will have a totally healthy pregnancy and carry full term, and I sincerely pray that is God's plan for her.  I know God can heal and accomplish things when doctors and statistics say it isn't possible.  That being said, I still believe in human responsibility and decision-making.  I could consider walking across I-4 as cars zoom by at 70 MPH and trust that God loves me and will care for me, but the chances of me getting hit and killed by a car are so good that I probably wouldn't take that chance.  God loves me so much that he gave me a functional brain with which to process such information and make the best decision I can.  I am thankful for that, and pray others would use their brains, too.

Thanks for letting me rant!

Thursday, October 20, 2011

20 Weeks Preggo!

Since the last blog post I have gotten more pregnant, yay!  I have seen the doctor probably 3 times since the last post, and each time everything looked great!  We are so encouraged that we will carry closer to full-term (if not all the way).  I guess I will have to post the obligatory belly picture soon since I am starting to show.  The baby is moving constantly, and I love to feel him or her kicking and squirming, and watching my belly jump around.  I can't help but think of Psalm 139:13-16 that say,

For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

It is so comforting to know that while we can see an imperfect picture of our baby on a sonogram, the Lord sees him or her perfectly, and is forming that little body inside of me; each day of his or her life is already known by Him.  Thank God nothing comes as a surprise to Him!

We go to the Maternal-Fetal doctor next Friday for yet another check up.  We haven not decided if we will find out the baby's gender, but getting ultrasounds every 2 weeks is making it very hard to hold out til March!  Once we hit 24 weeks preggo, I think the ultrasounds and doctor appts. are not going to be as frequent.  The goal is 40 weeks, but 23 weeks is when I went into preterm labor with Jonathan, so these upcoming weeks the doctors are going to be watching me and baby like hawks.

Speaking of baby J, today would have been his due date and first birthday!  Crazy that he is already 15 months old.  Like the Psalm above said, the Lord had each of his days ordained from conception, and although we weren't expecting J to come 16 weeks early, God was.  We thank Him every day for the mercy and faithfulness He showed us in the NICU, and even now.  Jonathan is the light of our lives and such a testimony to the power of prayer and the goodness of God.

Jonathan hanging out with Daddy on Little Gasparilla Island.

The weather has finally cooled off a little here, it is in the 50s outside right now, but it will warm up to the low 70s later.  I have a pumpkin cooking in the crock pot for some homemade whole wheat pumpkin muffins, no canned pumpkin in this house!  We'll see how those turn out (you can get the recipe here).  One thing is for sure: this Fall weather really makes me feel domestic!

Friday, September 16, 2011

The much-anticipated cerclage surgery

Yesterday I had the cerclage surgery that I have kind of been dreading.  The main reason was because of the anesthesia, which turned out to be not so bad.  We got to Florida Hospital around 5:30 am and I got called back about 40 minutes later.  They started my IV and I met one of the nurses named Karl.  He was really friendly so that helped ease my nerves.  Then I met the anesthesia team and they were also really friendly - so far, so good.

Once I got back to the OR they had me sit on a table and prop my feet up on a stool, hugging a pillow - the position for an epidural or a spinal (I had the spinal).  I had heard from my pregnant friends that epidurals (which are very similar to spinals) involve big needles and are painful, so this is why I was dreading it the most.  I was hooked up to a heart monitor that beeped with each beat of my heart, so as they sanitized the skin on my back, I would start to think about a big needle aimed at my spinal cord and the beeps would get faster.  I tried deep breathing to bring them back down because I didn't want the whole room to know how nervous I was.  I'm sure they could see it all over my face though because they were all talking to me about pretty much whatever they could think of.  That was really nice of them. 

The nurse anesthetist numbed the area first, so once she got to administering the actual anesthesia, it just felt like someone firmly pressing on my spine, and it was no where near as bad as I thought it was going to be.  They extracted some of my spinal fluid, then replace it with the drugs that made me numb from the waist down.  Within minutes my feet started to feel like they were asleep, and the sensation spread up my legs.  As I described what I was feeling and asked if it was normal, the nurse assured me it was, and looked very pleased that I was feeling that way.  The surgery team laid me down, hung a cloth in front of my face so I couldn't see anything, and the doctor got to work.  The other nurses and nurse anesthetists talked to me for the next 20 minutes while an IPOD that was on shuffle played everything from Whitney Houston to Lady Gaga.  It was such a relaxed environment and once the surgery was over, I was so happy that it had gone nothing like I thought it would.

In the recovery room, I had to keep trying to bend my knees and lift my hips off the bed to prove the numbness was gone.  After about an hour, I passed that test and got to move to a second recovery room, and Jeff was able to join me.  I finally got to eat some crackers and have some Gatorade, since I was ordered not to eat or drink anything after midnight the night before my surgery.  Jeff and I looked at pictures of Jonathan on his phone, and watched an episode of some Gordon Ramsay show where he traveled to India and made Indian food from ant eggs and such.  For my final test I had to use the bathroom.  As I got up to walk over there, my knees almost buckled under my weight.  As I clung to the nurse and Jeff, I was able to make it to the bathroom.  Sadly, there was no action in there and I had to stumble my way back to bed.  I downed the rest of my Gatorade and waited.  After almost 2 hours, a bottle of Gatorade and 1 1/2 liters of IV fluid, I began to worry that I would never be able to use the bathroom (even though I really had to), but I decided I had to try again, and I managed just enough for the nurses to let me go.  I was in so much pain from my bladder still being full and from the surgery that I was not very happy on the way home.  I got feeling back to my hips and abdomen about an hour later though and it was glorious!

Since then, I have been taking Indomethacin to help with the cramping I get occasionally as a result of the stitch.  My entire spine is sore as well, and when I can't take it anymore I take a Hydrocodone and fall asleep.  I try not to take too much medicine for the baby's sake, even though both are fine for pregnant women. 

So, that's my surgery story.  I go for a follow up in 2 weeks to make sure the stitch is holding up and my cervix isn't getting shorter.  I have been instructed to be a couch potato for the next week, which is kind of nice right now because I am still dealing with some soreness.  But once I start feeling better, it will be hard.  I also can't pick my baby up anymore and that it SUPER hard!  But in 6 months, hopefully we will see the fruit of all this. 

The hormones of pregnancy and our experience the last time has made it hard for me to be super positive about the cerclage.  Something like 90% of women who have one carry full term, which is encouraging.  But I can't get rid of this "wait and see" mentality.  I think it will be easier for me to be more positive once I get past 24 weeks (God willing).  I know that God is with me, but I don't know what He has in store for me with this pregnancy and to be honest, that's hard.  I know what the Bible says about worrying, and my future, and God's sovereignty.  Even still, it's hard.  But I am trying to pray myself into trusting Him no matter what, and not worrying about the "what-ifs".  I know my family and friends are praying the same for me.  And so far, this pregnancy is a million times better than the last one, so that should count for something, right?  At least we know what to watch for and are trying to prevent it from happening. 

So, here's to carrying full term!  Only 25 weeks to go...

Sunday, September 11, 2011

September 11th

 Ten years ago, I was sitting in a classroom at Winter Haven High School.  The words "terrorism", "jihad", "national security", "Patriot Act" - none of them meant anything to me.  Then the principal made an announcement telling the teachers to turn the TVs on.  The image appeared just in time for us to witness the planes hitting the WTC towers and and the towers crumbling.  I couldn't believe what I was seeing - it looked like something staged in Hollywood for some action movie.  I felt scared for our country, and once I learned Washington DC was a target, too, I became very concerned.  Even as a 17 year old girl I knew this was the beginning of a new chapter for our country.

One  year ago, I thought Jonathan would never come home from the NICU as a healthy baby.  He was 70 days old and still on a breathing machine.  We had also just gotten news that he was almost certainly going to be blind unless the hospital would approve a radical surgical procedure to save his vision.  We waited anxiously for over 8 hours to hear the results of the emergency meeting that was called to determine if the procedure would be approved.  Thank God, it was.

On two accounts, 9 years apart, September 11th has taught me that whatever situation is immediately facing me may seem insurmountable; I may have no direction and be powerless to do anything.  But God is not that way.  He is sovereign.  He goes before me and makes a way when I can't see one.  He provides for me in all situations.  I thank God for the experiences He's given me, and in those times He has proven that He will never leave me nor forsake me.  He has upheld me with His victorious right hand.

This Thursday I will have outpatient surgery to have a cerclage put in place in hopes that I can carry Baby #2 to full-term.  I am not scared of the surgery.  I am guilty of being anxious about the rest of the pregnancy, though.  But all I need to do is think back to how the Lord has provided for me, and I am convicted of my lack of faith.  I am thankful for modern medicine, and the extra watch the doctors will keep over me during this pregnancy.  But more than that, I am thankful for the God who never sleeps nor slumbers, and who creates life within me, where no one can see.

Friday, September 2, 2011

Is there a doctor in the house?

A lot of medical things going on in the family right now!

Jonathan has had a cold since Monday, and it has been getting worse as the week progresses.  Last night, he only slept for 1-2 hours at a time and stayed awake for almost 2 hours at a time.  All the while, Jeff was in bed with a sinus infection, so I am a tired girl today!  I took Jonathan to the Dr. this morning and we are doing Albuterol breathing treatments until this passes.  He hasn't had a high fever and he is happy when he is awake, so we are thankful for that!  Jeff is also on steroids and antibiotic so hopefully he will be feeling better soon, too.  It's hard on Mommy when both my boys are sick!

Also, Jeff and I went to the Maternal-Fetal specialist yesterday to see what the plan is for this pregnancy.  Just for background:  I had multiple complications with the last pregnancy that may or may not have caused Jonathan to be born early:
  1. I have a septated uterus (you can Google that), but we didn't know about it at the time.
  2. When Jonathan was born, we discovered E. Coli bacteria had taken up residence in the placenta, anmiotic fluid, and Jonathan's blood stream.  I had no symptoms of this infection, and the body's defense against infection during pregnancy is to get the baby out (otherwise I could've taken antibiotics).
  3. I had/have a weak cervix (the part of the body that keeps the baby in), so when Jonathan got too heavy, out he came.  Also, a weak cervix would make it easier for bacteria to travel up to the baby and infect it.
With all that said, it seems like the most likely situation for me is that I have an incompetent cervix.  This is good news because this can be helped with a simple surgery called a cerclage.  It's outpatient surgery that takes only a few hours and a spinal epidural.  The doctor said if this is the reason why Jonathan came early (and they can't be 100% sure that it is), then I have a 90+% chance of carrying the baby full term.  We are so excited about this, I cannot imagine carrying a baby that far!  We are still waiting to hear the exact date of surgery, but it will for sure be two weeks from now.  After that, the doctors will check the stitch every two weeks or so and make sure it is holding up.

After the surgery, I will have to be off my feet for a week or so.  Luckily, my awesome mom is flying in from Texas to help around the house and we are so excited to see her!  She hasn't seen Jonathan since last Thanksgiving so I know she is so excited, too.  He has come so far since then!

Granny and Jonathan, Thanksgiving 2010

Please keep Jeff in your prayers as he waits for relief from the intense pressure in his head, and pray that Jonathan would start to get better soon as well.  Also, please keep me and Baby in prayer as we prepare for surgery and whatever life for our family will look like after that.

Also, any comments or emails about people you know who have had successful cerclages would be much appreciated and encouraging!

    The Skippers

Wednesday, August 24, 2011

One year ago...

I started reading over the CaringBridge site, just to remind myself of how far we've come. Here is the post I wrote on August 25th of last year...(if you don't know our story, you can see it here).


No real changes as of today. He is still in the high 30s - mid 40s on his ventilator, and they weaned another ventilator setting today - yes!! We are so happy for our little man, and we are so thankful to God for His goodness to us.

Jonathan had his first evaluation with an occupational therapist today. She evaluated his reflexes and muscle tone, among other things. She said she didn't note anything that he cannot do that a 32 week preemie should do, so more good news! She will see him 3 days a week and do stretches and exercises as needed.

The eye doctor gave us an ok concerning the most recent eye appt., so - more good news!

Jonathan had a head ultrasound today, but we haven't heard anything about it, yet. I expect we will hear tomorrow, and I expect them to say "Nothing has changed!" Even better would be "Nothing is there!"

In light of the news of J getting off the vent (possibly) it is really hard to restrain myself from decorating his nursery. I have been putting it off because things have been so unpredictable, and they still are, really. But I feel like we are getting closer to the proverbial light at the end of the tunnel. I may even start registering for things for a baby shower! But even as I write this, I feel uneasy about actually doing it because of how hard it will be if it doesn't work out. But in the end, I am a glass-is-half-full kind of person, and I really do believe J is coming home. So, I will probably be shopping for furniture and all the baby stuff that comes along with having a little one (any suggestions would be nice, especially from preemie moms!)

We cannot wait to have our little hero at home with us where he belongs!!

Please continue to pray that Jonathan's lungs would keep getting stronger. They are our biggest problem right now!

Also, keep praying for protection from infection or damage to Jonathan's digestive system, brain, and eye formation.

Pray for Mommy and Daddy that as we get excited about this news we would still be grounded in God and find our joy and hope in Him, especially because this Preemie journey is such a roller coaster of high hopes and deep valleys.

It's weird (for lack of a better word) to read this from the other side of that whole situation. Jonathan was only 8 weeks old at this time, and in our wildest dreams would we ever think our little hero would be crawling around just a year later. Can't help but shake my head at the thought of God's incredible goodness to us.

Tuesday, August 23, 2011

We have a crawler!

Today Jonathan's Aunt Brittany and I took J to the pulmonologist to get evaluated for his Synagis shots (the RSV vaccine I mentioned before).  Afterwards, we went to Babies R Us to look at a new big boy car seat for him (he has to be sitting up nowadays).  So we decided on one (thanks to Granny for helping with the purchase!) and started the drive home.  We didn't hook it up though because we were in Aunt Brittany's car, so J had to ride in the baby seat for one more trip.  I had no idea that this new big-boy car seat would pave the way for another milestone today...

Once we got home and ate, we went to his room to play.  I grabbed my camera just in time to get this glorious shot of his first crawling trip!  As you will tell from the clapping, he was quite pleased with himself.

I wasn't quite convinced that this wasn't a fluke, so I decided to tempt him with his basketball goal again and see what happened.

As you can see, this was no fluke.  We have a crawler.  This is awesome because this was his next physical therapy goal, and we knew he was on his way, but we thought it would still be a while because he hated to use his arms to move.  We literally had to move his hands and knees ourselves.  And this was only last week that he hated it.    

The doctors told us he was "nonviable" when I went into preterm labor; once he was born he was only given a 30% chance of survival and we were told to expect a poor quality of life. 
Take THAT, doctors!

"Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think." -Ephesians 3:20

Sunday, August 21, 2011

Goodbye, sweet Summer!

Things have been really busy around here lately.  Summer is pretty much coming to an end for us, and even though we don't have school-age kids, things are still getting into "school mode".  Jeff is in seminary at RTS in Orlando getting his Master's in Biblical Studies.  He is about 1/3 of the way through the program, taking some courses online and driving to the campus for others.  This semester he will be spending all day one day a week in Orlando. 

With school also comes cold and flu season.  Last year at this time, Jonathan was still in the hospital so it wasn't too much of a concern for him (unless we caught it and brought it to him).  But this year, he is a big boy and spends a lot of time around other kids.  There is a particularly dangerous (and very common) virus this time of year called RSV, and babies with damaged lungs like Jonathan has are very susceptible to it.  There is a shot he can get every month to protect him from it, but we are waiting to see if our insurance will cover it again.  If they deny it, we can appeal, but I pray we don't have to go down that road.

This upcoming season I will be starting my second trimester of pregnancy.  We are hoping for a girl but still have a long time until we can find out.  Things are remarkably better with this pregnancy than they were last time.  At 11 weeks pregnant with Jonathan, I was suffering from a subchorionic bleed and was on complete bed rest.  It was no fun, to say the least.  This time, everything is going normally, and morning sickness gets the better of me every 3 days or so.  Hopefully that will be ending soon though.  I am scheduled to see a maternal/fetal specialist because of the way things went with the last pregnancy - more to come on that.

Praying things are well with you all.  Much love from the Skipper Family!

Saturday, August 20, 2011

New Things

"He who was seated on the throne said, “I am making everything new!” - Revelation 21:5

This blog used to be called "Jonathan's Journey" because that was the biggest thing in our lives for a long time. And in a way, Jonathan definitely is still the biggest thing. But God is doing so much within our family that it seemed like a new blog was appropriate. So here is Skipperific.

God has literally made everything new in our lives.  Jonathan is totally healthy and no longer on any medication or oxygen.  I am pregnant again and having a completely healthy pregnancy so far.  Jeff has completed his first year of Seminary with a 3.8 GPA, while working full-time at the church and being an amazing husband and father.  God has provided everything we need, and we are so humbled to see the place of abundance that He has brought us to within the last year.  What a journey!

The suffix -fic means "making or creating".  This blog will hopefully illustrate how the Author and Perfecter or our faith and lives is making and creating the Skipper family into His image, while keeping long distance family and friend updated about our lives.  My hope is that you will see God's sovereignty in our lives, and begin to realize that He is sovereign over yours, too.

Wednesday, June 15, 2011

Summer Fun!

I know it's been a while since this blog was updated (about 5 months...) but we have been very busy!

In the past 5 months, Jonathan has become potty trained, is taking cooking lessons and plans to start college in the Fall.

Not really, but it seems that way!  He has come SO far.  In January, he was just starting to become interested in the world around him, and every now and then we would get a smile or giggle.  Now, he is constantly babbling and laughing and smiles at the slightest encouragement.

Also, he has started physical therapy because he is "behind".  That means, even though he is 11 months old, he isn't doing what most 11 month old babies do (according to the physical therapist's special test).  Also, since he had grade 3 brain bleeds on both sides of his brain, that puts him at a higher risk of developmental impairments, so PT can help with that, too.  Not to mention, his physical therapist, Michelle, is really good with him and we have seen so much progress.  He is finally pushing himself up on his arms! 

He has also stopped taking all his medications (thank you, Lord!) and is doing well.  He still sees all of his doctors, but they are mostly just monitoring him.  His brain bleeds are not a concern for us at this point; he goes to see the kidney doctor this summer to see if his kidney reflux is gone (it seems to be); his retina doctor has released him from his care (and that was KIND OF sad because we had been seeing him so much!); and we have a sleep study next Tuesday night to see if we can finally get off this oxygen (he is still on oxygen at night).  Oh yeah, we are also off the apnea monitor which is awesome because when it would go off our hearts would stop (they were always false alarms, though).

Jonathan is eating really well, too.  He isn't eating table food yet, but he loves baby food.  My mom just bought me a Baby Bullet to make our own baby food.  I've made bananas and brown rice so far and he loved it! 

Speaking of my mom, she just left from a 10 day visit.  We all went to Anna Maria Island for 3 of those days:  me, Jeff, Jonathan, my mom, Jeff's parents, Jeff's sister and her fiance.  We rented a house and it was HEAVEN!  We decided we need to stay a week next year instead of just 3 days.   Here are some pics from the trip.
Jonathan in his beach tent.

Awesome AMI sunset, with the moon rise in the upper left corner.

Baby J was upset when the wave hit him, but he got over it.

Wednesday, January 12, 2011

When I give Jonathan his nightly breathing treatments, I take a little time for myself to peruse Facebook, check email and whatever else I can do with one hand (while the other tries to keep his mask in front of his face).

Today was a particularly challenging day with Jonathan because he wasn't happy anywhere except in Mommy or Daddy's arms.  This makes it hard to get anything done, and it is very stressful to hear your baby cry all day while you wonder, "What does this baby need?!"  He's crying right now!

But I realized tonight that there are some families that would give anything to hear their baby cry.

While browsing the Facebook homepage I came across the name of I person who is from the same town as me, and who Jeff and I also unexpectedly met in the NICU in Orlando.

He and his wife just had a baby, born full-term, and unexpectedly rushed to Orlando from the small hospital where she was born.  Their baby was terminally injured during her birth and after 6 days of being on life support, they were told she was brain dead and they family made the heart-breaking decision to take her off life support, where she passed peacefully back to her Father.

I couldn't help but look at this man's profile, not sure of what I was looking for, but then I saw an album which had the title of his beautiful daughter's name.  I scrolled through the album, which began with pictures of a baby in the NICU and had people's comments like, "Oh, she looks just like you!" and "How cute!"   Those comments broke my heart because I knew what happened in the end.  But I kept scrolling through.  I came across a picture of the mother, holding her baby, with her other 2 kids gathered around her.  The mother's face was turned away from her baby in agony, eyes shut.  I covered my face and began to sob.  I couldn't help myself.  Here I was getting frustrated at my son's inconsolable crying, and this woman may feel as if she'd give anything to hear her baby girl's cries.

I am thankful that I saw these pictures, as tragic as they were, because they've made my babies cries music to my ears again.  In the hospital, in those 8 long weeks that Jonathan was on a ventilator, we always said it would be music to our ears to hear his voice.  And now we hear it every day.  Some times as playful babbling, other times as loud screeching and crying.  Either way I am thankful for it, and very sorry that I ever took it for granted.

Saturday, January 8, 2011


WOW!  I know it's been a while since I posted anything.  I could go on and on with why but to be concise - I am the mom of a preemie!  'Nuff said.

I wanted to write tonight though, because it is cathartic to write, and maybe a NICU mom, or friend of one, will stumble upon this and be able to relate, or be encouraged, or get a laugh at my expense (I've laughed at others' expense and it felt so good so I will gladly be that for you if you need it).

However, I don't think this post will be a funny one.

If you are not a preemie parent, you may have a hard time understanding this.  But if you've ever been through something life-changing or traumatizing, then you probably can relate.

There are some times when I can't help but cry.  I think about everything Jeff and I went through with the events surrounding the conception, pregnancy and birth of Jonathan.  To look at us today, you might think, "What's the big deal?  Everything turned out fine!"  Yea, we are all home as a family and doing very well and we are so thankful for that because it is what we have dreamed of since July 3rd.  But that day will always be marred in my mind because of the unplanned birth of our son.  I know, it was God's plan.  And I believe His way is perfect.  That still doesn't take away the deep scar that it left.  I can remember once my water broke, I couldn't bring myself to open my eyes.  I didn't want to see what was going on as they wheeled my bed out of the delivery room and into the operating room.  I didn't want to see my husband dressed in scrubs to watch Jonathan as he was born; I didn't want to see my baby afterwards because I knew the slim chances of his survival.  I am crying as I write this because although things have turned out remarkably well for us, there is still deep pain in the back of my mind.  I can't explain why it's still there, but it is.  I often replay that day in my head - maybe I'm a narcissist.  But more than that, I don't want to forget that day because that was the day God began to teach us what He was really capable of.  He continued to create life in front of our eyes; he healed blood infections, collapsed lungs, certain blindness, malformed heart valves, brain hemorrhages, and so much more.  He showed me He didn't need me to create life - He used me for 24 weeks and 3 days, then my role was over and the rest was all Him.   He changed our lives forever as we witnessed His power over the course of 116 days.

I went into preterm labor on June 26th - that was when I was admitted into the hospital to try to keep the baby in (he was born a week later).  I have a daily devotional book called "Jesus Calling" which is written as if Jesus is talking to you.  This was the devotional from that day:

Stay calmly conscious of Me today, no matter what.  Remember that I go before you as well as with you into the day.  Nothing takes Me by surprise.  I will not allow circumstances to overwhelm you, so long as you look to Me.  I will help you cope with whatever the moment presents.  Collaborating with Me brings blessings that far outweigh all your troubles.  Awareness of My Presence contains Joy that can endure all eventualities.
Psalm 23:1-4

And I do not believe in coincidences.