The Unknown - ER Trip #2

Yesterday was Will's four week birthday and we celebrated got to make an unexpected trip back to Duke to mark the occasion (loads of sarcasm intended).  Will wasn't quite acting like himself much of the day; he was sleeping more than normal and wasn't an eager eater.  He also had an episode of vomiting that was worrisome.  I spent much of the day exchanging phone calls with his regular pediatrician, and I fully expected them to ask me to bring him in for evaluation.  They never did and at around 4 PM they suggested I take him to the ER if he didn't become more alert soon.  Honestly, I thought that was taking it a bit far and we got pretty frustrated with the pediatrician.  How is it that they didn't want to evaluate him, but it was a serious enough concern to require a trip to the ER?

In doubt, we phoned our friends at the NICU.  We ran through all of Will's symptoms with them and they, too, decided we should bring him in.  So, shortly before 6 last night, I loaded Will into the car and we made the 45 minute drive to the hospital.  This was the second time we've made the drive to the ER in his short life and I pray that we won't be making this a regular journey.

I think the issue is this....  everyone is afraid of Will.  They are afraid of the unknown.  I'm afraid of the unknown, too, but I hate to see our little guy put through so much because of fear.  He really does act every part the normal newborn but because of his potential syndrome everyone treats him differently.  I totally agree that it is better to be safe than sorry, but I can't help but feel bad for Will.  I worry that we're subjecting him to unnecessary medical tests because we don't yet have a diagnosis.  To the medical teams, Will is an interesting case.  They get excited to open his shirt and look at his chest, to review his xrays, to ask questions about Jeune's.  On the other hand, I get excited to be at home with Will.  To be normal.  To love him unconditionally and treat him just like the amazing little miracle boy that he is.

Today, I'll be taking him back to his regular pediatrician and I plan on asking some hard questions.  Are they too afraid to treat Will?  Do they not want to see him because they aren't sure what to do or say when we have questions?  I understand that Jeune's is rare but we aren't even sure that's what he has.  We won't have an answer to that for months.  In the meantime, we need to find some balance.  A balance between being cautious and responsible and just plain loving this boy and trusting in God that he will continue to protect and bless his life.

One good thing came out of my solo trip to the ER last night.  I met an amazing older nurse, Louise.  She shares that name with my grandmother and it's also a middle name for my mom and me.  She also bore a similar resemblance to my grandmother.  After talking through Will's symptoms with another nurse, Louise left the room and then returned a few minutes later alone.  She pulled her chair close to the side of the bed where I was sitting with Will, looked me square in the eye and just started asking questions about how all of this has been on us.  I found myself pouring out our whole story...  How things got complicated 9 days into the pregnancy.  How they never expected Will to live.  She didn't say much while I spoke, but when I had finished, she looked me in the eye and very confidently told me to just love that boy and let the medical stuff play out slowly, however it may.  She told me she also had bowed femurs when she was born, but her momma rubbed those femurs straight.  :)  Louise doesn't realize it, but she helped me make a very important decision last night.  I had been praying for guidance to answer a big question about our journey with Will.  My question was all about what to do with the big DNA test results we're supposed to get back in a few months.  I had been struggling with it lots the past week or so, but sitting there in that ER last night with Louise, I got my answer.  I'll blog more about that later though.

Me, my grandmother, Emme and my mom -- Nov. 2010

For now, I am going to hold this boy extra close today and be thankful for every precious moment.  Thanks Louise for being an answer to prayers!

Cold, cold go away!

Looks like we are going to get to tackle one of our first big parenting obstacles with Emme and Will sooner than we expected.

Since Will was born with a small chest and a potentially compromised respiratory system, we have been so afraid of him getting sick. We have tried to be extra careful with his big sister, Emme, to keep her healthy, too. Despite these efforts, it looks like sickness has arrived to our house.

Emme woke up last night feeling bad and she has a super runny nose, coughing and sneezing. Carlton has sequestered himself in the bonus room with her and we thought we may be able to keep Will from getting sick.

BUT, it seems Will is now feeling bad too. He's super lethargic and is now throwing up a bit. He's just not quite himself.

The call is into the doctor to see what we should do for Mr. Will. Usually, we would just let this type of thing run its course, but we are so paranoid about Will getting anything. I'm hopeful the doctor can give us some good advice on when we should take Will to be seen vs letting it just play out.

Ugh, I was so worried about this happening and now it is upon us. Please pray for our babies and that they get to feeling better soon. I worry about both of them, but especially Will since we are so unsure of what his body can handle. I really pray a trip to the hospital isn't in our near future.

DIY Kids Activity Table

Our first big DIY project after baby Will's arrival was this fantastic kids activity table.  I had been browsing Pinterest for quite some time looking at different ideas, but it wasn't until I stumbled across Andrea's blog, Strawberry Chic, that I found the perfect solution.  I was looking for something that looked a little different than the standard activity table, plus I wanted it to be a relatively simple and quick build.  Her tutorial fit the bill perfectly and last Sunday afternoon during nap time we got started.  Here's a quick peek at what it looked like after 2 hours of assembly and some additional painting time.

There were only three minor differences between her tutorial and what we did.  First, we purchased pre-fabricated wood panels (see picture below) instead of using plywood for the tabletop and shelf.  Our panels were already sanded and were actually slightly less expensive than plywood (win-win!).

Second, her tutorial said to cut the leg angles at 23 degrees, but we actually did 67 degrees (I think that's just a typing error).  Third and final, we used 2 inch screws to secure the shelf to the legs (her tutorial said to use 1 1/4 inch screws which weren't long enough).  Other than those three MINOR tweaks, we followed her tutorial completely and knocked the assembly part of this project out in just under two hours!

Once the assembly was complete, I sanded everything down and then began the painting process.  To save $$, I used leftover paint that I had from other projects.  The white paint is actually a paint-and-primer in one. I did two coats of that.  Once that was dry, I added the turquoise border around the edges.  It is placed one inch in from the outside edges and it is two inches wide.  After that was dry, I did two coats of Minwax Polycrylic to seal everything and make it easier for clean-up.

I used painters tape to create the turquoise border.

And here's the finished table!

This project is acutally based off Pottery Barn's Hudson Trestle Table which retails for $199 (in white).

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Project Cost & Sources

The total cost of my project was $96!  This includes the chairs and baskets.

1) DIY Kids Activity Table ($50 materials cost)

2) Target Children's Stacking Chairs ($30 on clearance for both)

3) Target Room Essentials YWeave Turquoise Baskets ($8 each in store - couldn't locate online)

4) Border Paint Color,  Twilight Meadow by Valspar (free because I used it for this chandelier project)

5) Base Paint, Kilz


So, for less than a hundred dollars, Emme and Will (someday) will get hours of fun and many memories at their little activity table.  I'm also happy to report that the finish is holding up well despite lots of accidental coloring on the actual tabletop itself.

Linked up @ : Shabby Nest, Somewhat Simple, Whipperberry, Tater Tots & Jello

A Dream Come True

It's 3:30 AM. Will woke me up from a bad dream. I had been dreaming about bad guys breaking into our house and going into Emme's bedroom. I heard them through her monitor. It was a really weird and very scary dream. I guess those are the kind of dreams you have when your sleep is so regularly interrupted by a hungry / fussy baby.

I'm glad Will was here to wake me from that bad dream. In fact, Will's safe arrival and journey so far has saved me from many nightmares. Just a few short weeks ago my dreams were plagued with fears about his birth and whether he would live or die.

At this moment, I am laying here with Will breathing deeply on my chest. He is sleeping like an angel. My angel. My miracle.

An older lady stopped us at the park yesterday and peered into his stroller. She proudly proclaimed that it must be a dream come true to have our amazing Emme and her brother, Will. I politely smiled and said, "yes, a dream come true in more ways than one."

Will, thank you for saving your momma from her bad dream tonight and for being such an amazing dream come true. Sweet dreams, angel. Ohh, and if you could sleep for more than 2 hours that would be icing on the cake! :)

Blessed.

Today, I am feeling blessed, absolutely blessed beyond measure.

It's just me and my two kiddos in our house.  My mom left early this morning to head back to Virginia and to her new life as a retiree.  It was a bittersweet goodbye and there may have been a few tears.  She had been here since early March.  We spent the two months leading up to Will's birth day in much anticipation.  There were worries, fears and cautious optimism for the future.  We enjoyed our time together for those two months, but there was always the giant elephant in the room.  What would happen when Will was born?  How would our lives be forever changed?

Today, I sit here in our quiet house...alone.  It is the first time I've been alone in months.  I honestly thought I would be nervous, but it's kind of nice.  It is normal.  Sure, there are still questions about the future, but aren't there always?  For now, I want to live in each moment.  I want to savor each hiccup, each grunt and every little baby wrinkle.

Today, Will is sleeping peacefully beside me and I can hear Emme's gentle, rhythmic breathing emanating from her monitor.  Life is good.  God is good.

I have been having a hard time wrapping my brain around everything that has transpired in the three weeks that Will has been here.  I truly feel like he's a miracle baby.  God has answered prayers.

I also ran across these verses today on a blog I read frequently, and I am reminded that in those days just a few short weeks ago when I felt so weak and unsure of the future that God was in control.  His strength was totally made evident in the birth of Will.

And He said to me, "My grace is sufficient for you, for My strength is made perfect in weakness."  Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.  Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake.  For when I am weak, then I am strong.

2 Corinthians 12:9-10

No Sleep + Acid Reflux = Bad Blogger

I have been a smidge slow with blogging lately and that's because of these three things, in no particular order...

• Evidently newborns don't sleep all night.  I had forgotten this and I've had a bit of a hard time adjusting to no sleep our new sleep schedule.
• My mom is preparing to leave this week and I'm scared.  I have a project list a mile long and only two days left to knock them out...wish me luck!
• Our darling Will has acid reflux.  Well, we think he does and so he moans and groans constantly.  He also has a nasty habit of getting choked and scaring the daylights out of me.  This keeps me pretty much glued to his side out of fear.

When you combine these three things, it means blogging has taken a backseat. Sorry about that.  But let's get back to the third thing on the list above for a second.

Last Wednesday night shortly before midnight, I woke up from a light sleep and heard Will choking.  He was sleeping in a pack and play a few feet away from our bed, so I jumped up and ran over to him and grabbed him up as quickly as I could.  I yelled for Carlton and we realized quickly that Will actually wasn't breathing.  We flipped him over, kind of simulating the infant heimlich, and had to suction out his mouth and throat.  Not good.  Not good at all.  Once he started catching his breath again, his respirations were rather fast and we were beyond scared.  After I literally picked myself up off the floor and started breathing again myself, we started discussing what we should do and I managed to convince Carlton that I thought we should call the NICU at Duke and see what they suggested.  When we were discharged, they told us to be sure we called if we ever needed any advice or anything, so I gladly took them up on the offer shortly after midnight.  

When I got through to the Fellow in charge, I told him what was going on with Will and in a matter of minutes he told me we should bring Will into the emergency room.  So, we loaded up the car and a few necessities and made the 45 minute drive to the ER.  Once we were there, it took over three hours before we ever saw a physician.  Will was sleeping peacefully at this point and was oblivious to the commotion around us.  Carlton and I, on the other hand, were exhausted and ready to leave.  In fact, at one point, we seriously contemplated just getting our things together and telling the nurses we were outta there.  Thankfully, we didn't do that, though, because once the doctors came in they seemed pretty concerned.  They ordered chest xrays and pretty soon thereafter they decided that Will was being admitted.  We really weren't prepared for that.

Shortly after six Thursday morning, I found myself back in those familiar hospital elevators.  I saw the transport person reach out and touch the button for the fifth floor and immediately I felt the all too familiar burn of tears begin creeping into my eyes.  I was upset we were back there again, only eleven days since we were initially discharged.  I think the real reason I shed tears, though, was remembering all of the other parents that still had children in the NICU.  The ones that haven't felt the sweet freedom of carrying their babies out...  I had tasted freedom with Will; we had been home together.  My heart still breaks for the parents that haven't had that moment.  

Back to last week, though, we spent a few hours in a general pediatrics care room and were finally discharged around 10 AM Thursday.  The best guess from doctors is that Will has a really bad case of acid reflux.  He is on Zantac now and we are hoping he starts feeling better soon.  I think he may have improved a little bit, but he still has a long way to go.  

So, that's what has been going on around here since last week.  Thanks again to everyone for your continued prayers and support.  Things really are going well with Will, all things considered.  We just keep praying for his body to be strong and for the Lord to continue protecting him and guiding us in making the right decisions for his care.

Will also just had his two week appointment today at his regular pediatrician and here are his stats!

• 8 pounds and 5 ounces!  That's six ounces more than his birthweight and 27th percentile
• 20 inches long; 17th percentile
• 14 inch head circumference; 17th percentile

Adjusting to Two Under Two

Things here continue to go well with Will.  We're adjusting to life as a family of four (gasp!!), and I'm slowly starting to think about how I'm going to manage having two kiddos on my own each day.  Yes, I know most moms probably have that well planned out before bringing home baby #2, but I never allowed myself to "go there" while pregnant with Will.  Since having him home, though, the reality of having two kids under two has slowly crept in...along with a smidge of fear.  I will be outnumbered!  

I know there are probably lots of moms reading this who have already tackled and mastered the art of managing two (or more!) kids each day.  I would love any and all tips, tricks and survival tactics you can share (drop me a comment, email, whatever).  Like, how do you ever manage to feed yourself or go the bathroom?!?

Emme has also decided to make things even more interesting now that her "baby brudder" is here.  She has always slept past seven AM, but she has decided in the last week that she wants to be out of bed shortly after six.  Conveniently, this is also usually just after Will has nursed and decided to return to his restful slumber.  The best part of all this is that Emme has also figured out how to open doors this week.  Now, when she gets up shortly after six, she opens her bedroom door and runs down the hall screaming for her "baby brudder".  I'm thinking of getting her an alarm clock like this one recommended by my blogging buddy, Anna.  Anyone think this will do the trick?  I'm hoping it's just a phase, though, and she'll get back to normal soon!

Kid Sleep Alarm Clock

Does it sound like I'm complaining about having two kiddos?!?  NAH.  I'm loving every single sleep deprived second.  They are such a blessing and I trust that in time I'll find the inability to feed myself during the day or use the bathroom alone a blessing, too.  I'm also beyond happy this post is about "normal" life adjustments after bringing home a baby.  Yes, life is kind of feeling normal...and it's such a miracle.

Guest Post: Raising Lily

I was recently contacted by Heather; she is a mother to a quirky little six and a half year old daughter, Lily.  When Lily was just under four months old, Heather was diagnosed with Mesothelioma.  This type of cancer kills 90-95% of people who have it.  Obviously, the diagnosis was life altering for this family, and I can't even begin to comprehend how Heather must have felt about potentially missing her daughter's life.  I thought it was important to share their story of hope with you.  Here it is.

Sometimes the worst thing that can happen to you is often the best. At least that’s the way it seems now. About 3 1/2 months after what had been the best day of my life – the birth of my beautiful daughter Lily – a nightmare began. It was a real possibility that I wouldn’t be able to live long enough to raise her.

Something was wrong, I had been back to work full time for about a month when I knew something wasn’t quite right. At first, I chalked up my lack of energy to being a new mom. I was out of breath all the time and tired.  A trip to the doctor turned into a slew of tests. The diagnosis: malignant pleural mesothelioma, a cancer in the lining of the lung caused primarily from exposure to asbestos. I had been unknowingly exposed to asbestos as a child more than three decades ago. I was given 15 months to live if I did nothing. The thought of not beating this disease, of leaving Lily and my husband alone, was unbearable. I knew I had to do whatever it took to live.

We left Lily with my parents and flew to Boston, where I was treated by one of the best mesothelioma doctors. I underwent an extrapleural pneumenectomy, a surgery to remove my left lung and the surrounding tissue. I had to stay in the hospital for 18 days, and then it took another two months of recovery before I could begin chemotherapy and radiation. Most new moms get the joy of holding and feeding their babies every day and watching them learn new skills. I had to watch these moments unfold through grainy black-and-walk photos, tears streaming down my face and those of the nurses. I reminded myself Lily was in the best of care, with my parents. And it was because of her that I was going through these treatments. 

Heather with her daughter, Lily, and husband, Cameron

Heather with her daughter, Lily, and husband, Cameron

Ironically, many of the people I thought I could count on weren't there for us at all.  The true blessing was the unexpected hlep and support we received.  The phrase "It Takes a Village: has rung ture for us over and over again.  Women who I used to babysit when I was a teenager volunteered to babysit my duaghter so my parents could continue going to work.  My parents also received an outpouring of love and support from people at church who I looked up to when I was growing up.  

In Boston, my husband and I met amazing people who were going through the same thing. They, too, gave so much of themselves to help us manage day-to-day.  I could never thank my parents enough for all they did for us, and that bond they created with Lily will undoubtedly last a lifetime, no matter how far apart they may live.

My family and I embrace life now because we know how fragile it can be. And we will forever be grateful to our “Village,” whose love and support saved us.  

Thank God Heather's story has a happy ending.  I'm so glad she contacted me and wanted to share it with you.  The hope is that her pain can be turned into purpose and help others when faced with trying situations. Behind every difficulty, there's always hope.  Keep the faith and keep moving forward; you just never know how your story will end.  To read more about Heather's journey, please visit her blog.  

Guest Post: From A Dad's Point Of View

This is a guest post written by my fabulous hubby, Carlton.  Words cannot even begin to describe what an amazing husband and father this man has been.  I think it is so easy in every day life to take your partner for granted.  You wake up, you go to work, you get home, you eat dinner, you go to bed.  Life is kind of mundane and it's easy to forget why you fell in love with someone.  This journey with Will has brought us closer and I'm so grateful for that.  We have had conversations about life and death.  We have cried on each other's shoulders.  When one of us is down, the other one is there picking up the pieces.  Life isn't always easy, but I am forever grateful that I have this strong, caring partner by my side.  Love you, Carlton.


As I sat in the quiet darkness beside my boy’s NICU bed, him quietly resting, I noticed a smiling lady come into the room.  She walked by quietly and sat at the bedside of the tiny premature baby behind me and began reading bible stories. It was late, so I didn’t immediately recognize who she was but it soon dawned on me that I had seen her before... it was the 3rd shift receptionist.  She was on her break; she was the only visitor that I saw with this premature baby during the entire duration of our stay.

It wasn’t until I got choked up reflecting on this to Mary later on that I realized what a profound effect the NICU (Neonatal Intensive Care Unit) was having on me.  Shortly after we arrived, I thought it to be the absolute worst place in the world and could not wait to leave.  The crying mothers and relatives, the sick babies, the quiet tension of waiting for the worst to happen.  A random stranger so distraught over what was going on with her situation that she hugged my sister in the wash room and wept over her shoulder.  Cops even showing up sometimes to contain grieving families that could not contain themselves.  Regardless of all this, by the time we were packing up on Sunday and as badly as we wanted to get home, the only thought going through my head about the NICU was that I was glad we had been there.  I will never forget the experience. 

Dad and Will having some kangaroo care time in the NICU.

My boy was not in the NICU because of what was wrong with him, but what might be wrong with him. And even as these overworked nurses had their hands full with some of the worst cases imaginable, they still treated my child with the same level of superior care, even though he needed less attention.  They doted over Will as if he were their own.  They stayed late and they came in early.  They discussed each of the four cases in our room with their shift-change replacement like they were engaging in an intense political discussion.  I do not hesitate to call these fine men and women ANGELS and being a long time cynic, I do not throw this term around lightly.  

Also during our stay, there were often NICU “alumni” coming back through the doors for a visit of gratitude. Many children who are treated there are treated for months, not days, and usually the same nurses will attend to them, so they get attached like it was a child of their own. The skill of the staff is great and their love is apparent.  It is in these people that this cynic saw the absolute best in humanity.  If there were any justice in the world, these nurses would be earning what professional athletes earn.  But they don’t seem to care.  It’s the job that they come in for, not the paycheck.  

Since Will ended up being born very healthy, he did not require much of the treatment that is available in the NICU.  The nurses’ skills were not tested by his case.  He was “boring”.  Even with Will’s boring case and our short stay in the NICU, I was profoundly impacted by the experience.  I can’t imagine what it does to a person who has to spend months in there with a child clinging to life.

If it were up to me, every parent-to-be or parent-want-to-be should spend time in the NICU and understand what love and compassion for a child really is.  

My boy, Will, is now an alumnus of the Duke NICU.  One of our charge nurses asked that we come back and visit so she can see how he progresses.  Part of me feels like we don’t belong, don’t deserve that honor, because Will’s case was so benign, but the other part of me knows that those nurses loved and cared for him just as much as any other case, so why deny them of that request?  For five agonizing, amazing days, my boy was their child as well. Simply put.  

Along with my wife, I want to sincerely thank each and every one of you for your wishes and prayers.  Before the NICU, I probably would have chalked up Will’s miraculous turnaround simply as a misdiagnosis, but after spending five days in the presence of angels, I now am absolutely certain it was a miracle from God. 

---Carlton, aka Mr. Man 

Happy One Week Birthday!

I really can't believe it; sweet Will is one week old today!  Time has absolutely flown by since his birth and it seems unreal that he is here with us.  At this very moment, Will is snoozing peacefully on our bed while we reminisce about his birth.  He is truly our little miracle and we're loving every minute with him.

On this day last week, I was surrounded by lots of people offering their support and love as we headed into the unknown.  I knew that Will's arrival was imminent, but I had no idea how it would all turn out.  We had briefings with lots of medical staff and answered questions no soon-to-be parent should ever have to answer.  Do you want chest compressions if he's not breathing?  Do you want him put on a respirator?  Doctors also told me that if I didn't hear him cry when they delivered him, then it was a bad sign.  Let's just say that all of those questions and comments coupled with months and months of scary ultrasounds left me feeling very nervous about his birth.

Right before being wheeled back to the operating room, we all said a prayer.  I was too nervous to hear all the words, but inside I was pleading for the life of my son.  I couldn't believe that literally his life or death was mere minutes away.  I kissed Carlton goodbye and as tears filled my eyes they rolled me back towards the operating room.  I remember hearing the nervous chatter of nurses; they, too, were unsure of what to say at a moment like this.  I remember looking up at the bright lights and being scared out of my mind.  I remember shaking violently; the room was cold and my nerves were uncontrollable.  I just couldn't stop the tears from flowing.  I knew that the moment we had been thinking of for so many months was here.  Will was being born.  In some ways, I felt like we were tinkering with his destiny.  We were delivering him early via elective c-section.  If he didn't make it, was I taking him away earlier than I had to?  Shouldn't I want him to stay in my womb longer just so he's with us?  It was gut wrenching and I felt totally out of control.  I was there laying on the operating table alone, the doctors were scrubbing in, and Will was coming whether we were ready or not.

Soon, Carlton joined everyone in the operating room and the doctor announced that he had already cut me open.  Only a few minutes passed and then he declared that he was getting ready to pull Will out.  The moment had arrived.  I held my breath and prayed harder than I've ever prayed before that I would hear Will cry.  If he was crying, he was breathing.  Breathe, Will, breathe.  Just like the doctor had said, I felt Will being pushed out and soon enough I heard it.  I heard his cry.  It wasn't a weak wimper, it was a cry. A CRY!  Praise God our little Will cried!  I absolutely lost it at this point and Carlton took off running with the doctors to evaluate him.  I was sad that I didn't get to see Will or touch him before he was gone, but knowing that his dad was there made it a little easier.

The doctors took Will to a separate room for evaluation and monitoring; Carlton went with him.  I was left all alone on that operating table waiting for the procedure to be finished.  It took nearly forty-five minutes and during this time, I held my phone tightly in my hand waiting for updates from Carlton.  Yes, I was the crazy girl laying on the operating table crying, shaking and trying to text my husband for updates.  It wasn't a pretty sight, but I didn't care.  Soon, the updates started coming in...

Obviously this isn't the picture perfect way your precious son enters the world, but
thankfully I was able to have my phone and get updates confirming
that Will was doing well.

I am so thankful that last week is over.  It was by far one of the most difficult weeks of my life, yet it has also been one of the greatest.  We serve an almighty God and I can think of no other explanation for Will's journey other than to say it's a true miracle.  We have jumped from one scary diagnosis to another and yet this sweet boy keeps acting like any other boring ol' newborn.  He eats, he sleeps, he pees, he poops.  It's boring and it's fabulous.  We are thrilled to have him home with us and prayerful that his miraculous journey continues.  Today, I thank God for miracles.  I thank Him for the safe entry of Will into this word and I pray for His continued guidance in the coming days.

Happy one week birthday, sweet boy.  I love you to the moon and back.

Will also had his first checkup yesterday at the regular pediatrician's office and our boy continued surprising everyone.  We had prepared the pediatrician months ago for what we believed was to come with Will, so when we walked in yesterday and showed him Will, he was shocked.  He gave him a full evaluation and as I assaulted him with one hard question after another, he eventually just looked at me and smiled and said, "go home, stop worrying and enjoy that baby".  That's great advice and exactly what we intend to do.

The Best News of All

Today has been amazing.  Maybe you have already noticed?!?!

I've posted three times today, but here's the best post of them all.

That's right...  We are absolutely thrilled and frankly a little surprised, but we have all been discharged.  Will is going home with us when we leave today.  I really can't believe it!!!

There are so many emotions that come along with this news, but I'll get to that later.  For now, we're packing our bags and waiting on discharge paperwork, then we're outta here!!!

Suite Irony

I started writing this around 7:30 EST Sunday morning...

What a blessing this morning has been already!  Have I mentioned it's before 8 AM?!  :)  When you're up pretty much almost all night, it's easy to find blessings so early.

Will is doing absolutely fantastic.  He's eating like an absolute pro.  They have removed his IV and NG tube and we're back to only basic monitoring of his vitals.  I'm getting discharged shortly, but we have been given an amazing room down in the NICU where we'll begin taking care of him 100% of the time.  It's like the best of both worlds.  We get to be parents and sole caregivers, but we have amazingly talented and caring NICU staff watching over us to make sure things continue going well.

The room we'll be in is called a care by parent room.  It's a bit like a suite.  There are chairs that pull out into beds, a small refrigerator, a bathroom, etc.  The ironic thing about this room that we're moving into is that it's the same room they showed us several months ago when we came on our tour of the hospital.  At the time of the tour, they were preparing us for the worst.  They talked about this room and described it as a place we could go to have private time with Will as a family before he passed away.  So ever since Will's birth, I would walk by these rooms and have a sense of dread.  I wondered what was going on behind the doors.  I prayed that we wouldn't ever have to enter those doors.

Now, I sit here feeling a sense of "suite irony".  The room I was so afraid of entering has now become a place of safe haven I can't wait to get into.  I can't wait to get my whole family in there together and to have my little boy sleeping close to me.  Praise God for this sweet, suite irony and the blessings He has given to us the past few days.

When I look at Will, I forget about his diagnosis.  In fact, I'm bound and determined to forget about it.  My little boy is here and he's perfect.  We don't know what the future holds and frankly I don't care.  This experience has taught me so many things, but perhaps this is one of the most important.  Live in the moment.  Do not think towards tomorrow.  More importantly, God is in control and there's no point in stressing about words like "life expectancy" or "outlook".  No one can predict the future for Will and thank God they cannot.  I am leaving my sweet boy's life in His hands and that is the absolute perfect place for him to be.  I find solace in that.

Finally, I just wanted to share a few more pictures of Will and a few words from an amazing friend.  I so wish I could think and write as eloquently as she does and these words brought me to tears when I read them.

An Update on Will

Whew, it's been quite the weekend around here.  I have lost all sense of time and if it weren't for the constant ticking of the clock on the wall, I wouldn't be so sure that time had not stood still.

I'm just going to go ahead and say it.  We have had a great weekend enjoying our sweet boy.  Friday was a bit of a rough day, though.  When we went to see him for his 8 AM feeding, we realized he was having some digestive issues.  They immediately rushed him down for x-rays and thankfully he got a clean bill of health on his stomach and intestines.  The downside to his issues on Friday was that we had to stop feeding him for 24 hours.  They also had to put in an IV and a NG tube (used for pulling stuff out of his belly and administering some meds).  It was beyond difficult to see our little boy "hooked up" for the first time.  We had been so relieved and proud that he had not been hooked up to anything, so it was a huge setback when he started requiring more care.

Since Friday, he's made improvements.  Yesterday (Saturday), Will got a clean bill of health on his bladder, liver and kidneys.  They were concerned about these since many people affected with Jeune's Syndrome have concerns with these organs.  We were also able to begin feeding him again and throughout the day he showed signs of hunger and continued improving.  The best news here is that we went from bottle feeding him limited amounts of breastmilk to now exclusively breastfeeding him.  I can't even begin to tell you how relieved we are by this major development.  The other little tidbit is that he's been reviewed by pulmonology and they have agreed that he's doing well with his breathing.  He still has had zero breathing assistance, so they don't feel that there's any intervention or guidance they can provide at this time.  That's also good news!

At around 3 AM today (Sunday), we also learned from doctors that they are thinking of letting us take Will into a parents room.  This is a room just outside of the NICU doors where we'll be in full control of taking care of him.  He will stay in the room with us and it will give us more privacy and normalcy with him to continue on with breastfeeding and ensuring he's ready to go home.  He will still technically be in the NICU and we'll have a nurse assigned to him, but it's a MAJOR step in preparing him to go home.  It also takes off so much worry from us.  Late Saturday night, I was so worried about how we were going to handle breastfeeding him once I was discharged (that's happening this morning!).  I found myself in tears trying to plan it all out and just a few hours later the doctors proposed the plan for him rooming in with us.  Another giant prayer answered and such a relief!

We also sent off all of his DNA for full genome sequencing.  I won't get into all the details behind this, but let's just say that it was quite the learning experience.  It may take up to four months before we have a confirmed diagnosis on Will, but I'm not anxious for those results.  I just want to love my boy.  I just want to get him home and continue loving him every single minute of every day.

Your prayers are working.  He has recovered from Friday's setback and we are now beginning discussions on the best way to get him released and home with us.  It looks like we'll be here at least another couple of days, but at least he'll be in a room with us and we'll be taking care of him even more.  It's truly a blessing and an answer to many prayers.

More to come soon!

A long, dark night

The words are hard to find. The peace is even harder. We did something no parent in our shoes should do when left alone in the hospital overnight. We researched the current diagnosis for Will.

I read the words on the screen and the all too familiar feelings of dread crept back into me. How could it be that my precious son may not make it after everything we have been through? Are we really headed down the road of eventually losing him?

I lost it. I am not ashamed to admit it. I absolutely, positively became the mom that could no longer hold it together. I cried, I asked God why, and I begged and pleaded that everything just be okay with Will.

This journey is not even close to over. Our fight for Will is only beginning. We need to educate ourselves and make sure we have the right diagnosis this time. We will get to all that though. The wheels are in motion.

For now, we have decided that we just need to love our son, to hold him and feed him every chance we get. If his days on this earth are shorter than we pray for, we are going to do everything in our power to make them the best days possible. We are his parents. We have to be strong for him. He deserves the very best and we owe him all of the newborn snuggles and cuddles.

Last night, after totally losing it, we went down and saw our little boy. He was bundled up and sleeping peacefully. I cried and then cried some more, but when those little fingers grab mine, it snaps me back to reality. The reality that he is here. He is here now!!! Praise God that he is alive now!! That is more than what we knew to expect just two days ago. We do have our miracle; it is time to cherish him and move forward in faith that our God won't leave our side.

Earlier this morning, Carlton was wheeling me back to my room and I caught a glimpse of a prayer on the wall that we have passed many times these past few days. I hadn't noticed it before but it was a great reminder since it is one of the prayers I recited many times at the beginning of this journey.

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

We will hopefully learn more about Will today. Please just pray for us. Pray that we can live fully in each moment. That we can be strong for our little boy and strong for each other.

Our journey has truly just begun. I give praise today for a new day though. The sun is up. I hear the chatter of children in the hall. Our long, dark night is over. Our boy is alive. It is time to love him. To feed him. To be normal. Thank you God for today, tomorrow and the forever you have given to us and our precious little boy.

***im typing from my mobile device now and dont have time to proofread. Excuse an crazy auto-fill words.

Enjoying The Ride with Will

First, I have to just say, Praise God.  Our little boy, William, entered this world yesterday around 3:41 PM.  He weighed just under eight pounds and came out with the sweetest cries.  The high pitched squeaks were pure music to my soul.  My heart leapt with joy and tears of pure elation ran down my cheeks.  I have never in my life been more relieved to hear a sound.

Yesterday was a whirlwind.  The day went by incredibly fast and before I knew it, Will was here.  I'll save the delivery story for another day, but let's just say that he shocked all of the doctors when he came out crying and acting every part the "normal" baby.  Hours before he arrived, we were having conversations with doctors about whether to do chest compressions if he wasn't breathing and how they would bring him to us if he wasn't going to live.  To go from those dire conversations to hearing our sweet boy breathe was and is a true miracle and gift from God.

Will has been doing absolutely fantastic since his birth.  He hasn't needed any help breathing at all, he doesn't have any IVs, he's eating fairly well and he seems completely comfortable.  As most of you know, the most likely diagnosis prior to his birth was osteogenesis imperfecta.  This is what the doctors had prepared for and this morning we finally got a chance to do extensive x-rays on his body to look for healed or new fractures.  We waited on the results with much anticipation and shortly before lunch today we learned that ZERO fractures were present.  Will had surprised us again.  :)  The most concerning part of his x-ray was that his chest is indeed small.  You can even see this with the naked eye and it has a distinctive bell shape.  A couple of other funky bones were noted, but overall Will looks great.

I have been going through the past 24 hours in overdrive.  I have praised God for the miracle gift he gave to us in Will.  I went from thinking that my little boy may die to holding his sweet hand and giving him his first bath.  It has been a truly amazing time.  BUT, you know our Will.  He's always full of surprises, right?

This afternoon, he decided to give us a little surprise again.  I sit here tonight lacking the deep words I want to write with.  I want to find a unique way of sharing these thoughts with all of you.  BUT, I am too tired for the right words.  Maybe I'm too hopped up on pain meds for the right words, so I'll just get right to the point.

The rug has been ripped out from underneath me again.  I spent this afternoon allowing myself to finally relax and breathe deeply.  I thought Will was out of the woods and had convinced myself that he probably just has a super mild form of OI or maybe some other really mild skeletal dysplasia.  Around 4:00 PM, Carlton walked into my hospital room with the geneticist.  They took a seat beside my bed and within a minute, I realized that my world was spinning out of control again.  A totally new syndrome was on the table for us to discuss, Jeune Syndrome.   Feel free to click on that link to read more about it.  I clicked on it and frankly it makes me want to be sick to read the words.

We are still processing the information we learned today.  I don't know how to feel.  I know that my faith in God still needs to be unwavering.  I know He alone has taken us this far and through Him we can get through this latest surprise.

My elation has been replaced with fear.  I am scared that Will may die.  Maybe not now, maybe not this year, but maybe sooner than any parent would want.  I am shocked to be back in this place of fear and doubt.  I have a precious, beautiful baby boy laying down in the NICU and I want him to be healthy.  But tonight, I am scared again.  I am not strong.  I can't say anything other than this...please pray for us.  I rejoice in God's miracle that Will is alive.  I am so thankful that he is happy and healthy at this moment, but I worry for the future.  I am just finding it hard to let go of the control...to relax...to put it in God's hands again.  BUT, I will.  I must.

I will do my best to keep you all posted.  We have more testing to do now to check on Will's liver and kidneys.  It will probably be a couple of months before we have a firm diagnosis, but all signs are pointing to Jeune Syndrome.  As we learn more, I'll pass along the info.  In so many ways, I feel like our journey is starting over.  I have another topic to research, more support to find... and I have to worry about whether Will is going to live or die.

Your thoughts and prayers have truly moved our family and I know that God has given us a true miracle with Will.  I just pray that our sweet boy will be okay.

Thanks for your support.

Wise Words

I wish I had the right words to say today, but I don't.  I feel like I should have some profound thoughts to share as we approach Will's birth, but I don't.

I feel nervous.  Yet excited.
I have a sense of calm and peace.  Yet I am paralyzed with fear thinking of the "worst case scenario".

I realized today just how nervous Carlton and my Mom are heading into tomorrow.  I guess I've been kind of oblivious to all the chatter around me the past few days.  They certainly seem far more nervous than I do and that scares me a little.  Maybe I should be more afraid?  More nervous?

In some ways, having over 20 weeks to prepare myself for tomorrow has been a blessing.  We have known that Will has some potential issues for many, many months and I've had time to process all of it and educate myself as best as I can.  For a perfectionist like me, that's about as much heads up as I could have received.  In some ways, I guess knowing for so long was also a curse.  I haven't been able to enjoy the pregnancy with Will as much as I would have liked, and I've spent countless hours worrying and praying for his health and safety.

By this time tomorrow, I will have seen our little boy's face and there's one thing I know for sure.  Once I see him, none of this will matter any longer.  The worry, the fears, the nervousness will all disappear.  It will be replaced with pure love and the recognition of what an amazing gift from God this little boy is to our family.  Regardless of how our story will seemingly "turn out", it truly is the beginning of our life together with Will and for that I'm eternally grateful.

Be strong and courageous.  Do not be afraid or terrified because of them, 

for the Lord your God goes with you; he will never leave you nor forsake you.  Deuteronomy 31:6

For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.  Isaiah 41:13

Please think of us tomorrow and pray for sweet Will as he enters this world.  The c-section is scheduled for 1:00 PM EST and we'll do our best to keep everyone updated.

Thank you again for your support through this journey...it's just the beginning.

Edited to Add:  I received a call tonight from one of my aunt's and she told me that Isaiah 41:13 was one of my grandmother's favorite bible verses (I hadn't realized this before now).  In fact, she recited it out loud during her final days of illness before passing away last Fall.  I find it so reassuring to have this verse so close to my heart during this time.  It's kind of funny that it also arrived in my inbox on Saturday morning when were at the hospital with our early labor complications; Saturday also just happened to be my grandmother's birthday.  I'm thinking just maybe my grandmother does have her  angel wings on and is preparing to guide Will's delivery tomorrow!  If she does, I'm predicting that he arrives with quite a commotion!! 


The photo below is a picture I took of my grandmother's hands along with Will's big sister, Emme's, when she was just a couple months old.   Precious.