Talking About Will's Delivery (NICU and L&D Visit)

*Disclaimer:  I've debated about posting this or just keeping it in my drafts folder, but I have ultimately decided to share it.  There are other moms out there that may be going through something similar and if it can reassure even one that they're not alone, then that's good enough for me.  

Today was..... raw.  I have racked my brain to find another word to describe it, but I couldn't think of anything to give it justice (I also couldn't stop myself from seeing if it was wrack or rack, ugh I'm such a perfectionist).  Carlton and I went to the hospital today to tour the labor and delivery area and also the NICU.  While there, we also met with some people that will be caring for us during our stay.

I had known for a few weeks that today's visit would also include a talk with a neonatalogist.  This doctor is the one that typically coordinates care for a newborn, especially one that may have complications.  I guess I expected to have a one-on-one meeting with this doctor, but upon our arrival at the hospital, we were ushered into a conference room with six people waiting to greet us.  I just have to start by saying that this was my first time in a conference room doing the polite shaking of hands, exchanges of greetings, etc since I left my old job in corporate America back in 2010.  It was weird, yet I was strangely comfortable in that setting.  We all took our places at the table and I broke the ice by asking if everyone knew our situation / background / etc.  They all promptly nodded their heads and said they knew our history; I'm guessing they had been meeting prior to our arrival to discuss our case (it also didn't hurt that a few of them had file folders with our names in front of them).  

The crazy thing is that it became apparent within the first minute of our discussion that the talk we were there to have with them was about Will's quality of life.  You're probably asking what in the world I mean by that.  Don't worry, though, I'll get to it.  Within the first few minutes of the discussion, we had already begun tackling questions and thoughts about what we were going to do when Will dies.  Yep, you heard me right...when he dies.  There was lots of talk about logistics and the fact that when I have a c-section I'll be out of commission for six hours.  Carlton will be able to go with Will everywhere from the moment he's born, but I have to recover, so that means I won't be with him during all of the initial assessments, etc.  If he's not doing well, the doctors will try to let us know as soon as possible and they'll make every effort to get me with him as quickly as possible.  The tricky part is that there's just no way to know when I'll actually be able to touch my precious son for the first time.  That absolutely scares me silly.  I don't want to get into a lot of detail behind the logistics discussion because everything totally depends on how Will is breathing when he's born, but it was so disturbing to talk through all of those scenarios.  The talk today even went so low as to have one of the team members offer up that they have a list of local funeral homes that can help make arrangements for us.  RAW.  

Lots of discussion happened today; it wasn't all so dire.  Some of it was very productive and some of it was very helpful.  I'm also a visual person so I feel more comfortable knowing what rooms Will and I will be in before and after delivery.  I guess I don't want that last paragraph to seem all doom and gloom.  Honestly, I guess it's just the reality of the worst case scenario.  The "quality of life team" is doing their best to try to make sure Will is in good hands from the moment he's born; we just had a hard time not feeling like we were confronted by the death squad today.  Carlton actually tried to break the negative flow of discussion at one point by asking how everything changes if Will actually lives.  God love that man and his positive attitude...I was so happy when he said that.

This post is disjointed; it's not the way I usually write, but it's what happened today and it's all still so new.  I want to write about it because I'm still trying to process it all.  I have ABSOLUTELY not given up hope for our sweet boy; I just hate feeling like we have to prove them wrong.  It's heartbreaking to have our sweet boy's entrance into this world plagued by so much doubt about whether he'll live or die.  I just don't know how else to say it.  It's raw.  It's surreal.  Today was just so much like a business meeting.  The austere conference room.  The exchanging of business cards.  The handshakes and smiles when all I really wanted to do was to crawl into the corner alone.  Honestly, I really just wanted to cry, but I couldn't let myself go.  Maybe that was a blessing?  We were there talking about our son potentially dying and yet it would have felt wrong to cry?!?  It is just hard to come to terms with the fact that my child is just another case, just another patient, just another baby.  He's my baby and I want him to live.  I don't want to talk about chaplains and funeral homes and when his little sister can meet him for the first time if he's not doing well.  I don't want them to have our pastor's number in his chart for any reason other than to tell him about our amazing little miracle baby.  Ugh.

Tonight, I am praying for that peace I've felt for the last few weeks to come back to me.  Today stripped it away.  I need that peace back, but praise the Lord that I still have hope.  It was quickly restored.  After our meetings concluded, Carlton and I went to visit with an OI momma and her precious little boy that was receiving an infusion.  One look at that sweet little boy's face and hearing his little coos reassured me that they can be wrong.  We are all human and we are all vulnerable.  Miracles happen every day.  I pray that our little boy is a miracle baby and that all of those morbid conversations we had today were for nothing.  Please, let them be for nothing.

The Numbers Game

I started writing this post last night, but the words and will to write failed me.  Yesterday was another tough day.  I had an appointment at Duke to meet with a genetic counselor and have my routine OB visit and ultrasound to check on Will.  We also had some additional images to gather for the Cedar Sinai skeletal dysplasia research so my appointment was nearly three hours long.  To say that I was tired and ready to not think about it would have been an understatement for how I felt last night.

I don't really know how to start this post, so I'll begin with a look back.  So often throughout our journey with Will it seems we have been playing a numbers game.

• 176 days ago we found out we were expecting baby #2
• 167 days ago our pregnancy complications began with bleeding
• 122 days ago severe bleeding took us to the ER; we miraculously learned Will was still alive
• 76 days ago we learned that Will had short, bowed femurs at our 18 week anatomy scan
• Less than 24 hours ago the doctor gave me a sad nod and said that Will's chest to abdomen ratio was 0.45

Before I go on, let me explain a little more about that last number.  From all the research I have done the last few months, I learned that most lethal skeletal dysplasias are said to have a chest to abdomen ratio less than 0.6.  For those of us that do better with a picture illustration, here's what I'm talking about.  

Source:  Jeanty, Philippe and Gloria Valero.  "The assessment of the fetus with a skeletal dysplasia."  Women's Health Alliance 

As the sonographer was measuring Will yesterday, it became apparent to even my untrained eye that the measurements were really off.  I had noticed it before and the doctor had pointed it out before, too, but I had never seen a view of his body that literally put one circle around the outside of his chest and then another around his heart.  It was beyond obvious that his heart takes up way more than 50% of his chest; 0.45 to be more exact.

After the sonographer finished and left the room, I had about twenty minutes to lay there in the quiet darkness on the exam table waiting for the doctor.  My thoughts were swirling, but oddly enough I was calm.  I knew what was coming.  I felt prepared.  I thought about what I would do if I got upset when the doctor actually told me his thoughts and I prayed.  I prayed for strength and for comfort, but mainly I prayed for Will.  I prayed that the Lord just look after him and do whatever is best for our sweet boy that we both love so much.  I felt so much comfort and peace with everything.  I know God has a plan and He is in control.  I cannot change the numbers or Will's chest or whether he will live or die; God is in control of everything.  I just have to make myself open to this journey and ready to receive the blessing of this child.  

I held it together with the doctor but a few tears did slip out as he asked how I was handling everything.  Why does that question get me every single time?  He asked if I was sleeping..if I was eating..if I was a basket case.  I tried explaining to him how I felt about everything, but my words failed me.  I am sleeping, I am eating, and I was a basket case long before any of this ever started.  :)  All joking aside, though, I think we're handling it pretty well.  It is comforting knowing that we can't control or fix it.  I can't imagine the frustration I would feel if there was something more that I thought we could be doing for Will, but there's not.  We are powerless.  His sweet body is in the hands of the Lord and we have to trust that His will be done.  Does it mean that I'm going to stop praying for a miracle?  No.  Does it mean that I'm giving up hope?  Absolutely not.  Does it mean that I'm not going to prepare our family to welcome Will home?  No.  

Thankfully, I don't know what the future holds.  I do know there are kids alive today that were given a lethal diagnosis in utero.  If you want to read about one of those special little kids, meet Brennan.    I also know that we have only 77 days before Will is due!!  There's a chance I may have a c-section which would likely be scheduled around May 2, so our time may be even shorter.  We need to get busy!!

For all of the awesome people that have reached out to our family, thank you.  Your emails, messages, cards and prayers sustain us each day.  It is so easy to feel alone at times and knowing we have such a strong support system behind us means the world.  Even though I can't seem to get myself together enough to send thank you notes to everyone for their support, please know that we appreciate everything far, far more than we could ever adequately express.

Please continue to pray for us in the days ahead.

• Pray for Will that his body grows strong; also pray that he will know how much he's loved and wanted by our family even before he's born
• Pray that Carlton (yes, that's Mr. Man's name) and I find the guidance and strength we need to have the difficult talks that are potentially coming in the days ahead; please also pray that our minds and hearts are open to following God's plan for our family
• Pray that Emme (yes, that's The Babe's name) continues thriving and does not suffer from the 'different' type of life we're all leading right now
• Pray that our fears can be quieted and that His peace can wash over us and help us continue to focus on His plan for our child
• Pray that our minds and hearts be open to the journey we're on; that we may find the reason behind all of this and use it to glorify Him

I don't know what else to pray for...  It seems like I find myself uttering small prayers pretty much 24 hours a day now.  If the dog pukes, I pray.  If I burn the chicken nuggets, I pray.  I think I'm turning into Annelle from Steel Magnolias. :) Remember, Truvy's line about Annelle saying how she prays all the time and maybe she's praying because she shot the elastic in her pantyhose?  Yep, that's me these days..except I'm not wearing hose.  Ahhh, nothing like ending on a serious note, huh?  :)  

Source

PS - As more people become aware of our story, I feel myself becoming a bit more filtered.  There are so many different experiences we all go through with our families.  Whether it is difficulty conceiving or losing a child, we all have stories and I want to be respectful of that.  I know there are also families out there that have dealt with an OI diagnosis before and there are also those that have dealt with a lethal OI diagnosis.  I know that doctors and measurements can be wrong.  I just want to say again that I'm not giving up hope and I don't think Will's outcome is definite.  This is just where we stand today.  The future and our sweet boy are in the hands of God and for that I am very thankful.  I also just wanted to say that I'm blogging about all of this because I know there are other women out there going through something similar today and there will be others in the future.  If anything I say can help them, it's worth it.  It's also therapeutic for me to write it all out.  Maybe there's even another reason for me to share all of this?!  I just don't know yet and I guess that's part of the journey.

My Little Valentine

I don't have a lot of news to share on Will, except for the fact that he appears to be hanging in there!  We were super worried about preterm labor or placental abruption at the end of last week, but I had a follow up appointment yesterday and it seems things are still okay for now.  Thank God.  We need Will to stay in there as long as possible to give his chest and lungs plenty of time to develop and support his breathing.  I had an opportunity yesterday to spend more quality time with Will during a long ultrasound and the technician made sure to grab some sweet pictures of him for me.

During all of this ordeal, it became so easy to focus on Will's "issues".  We spent so much time looking at his skeletal system and trying to figure out measurements that it seemed everyone kind of forgot to take a peek at our sweet little boy's face.  When we had our last big appointment in early February, I told Mr. Man that I just wanted to focus on enjoying Will during the ultrasound.  Unfortunately, though, he was head down and only wanted to show us the back of his head.  I left disappointed that I hadn't been able to see our sweet boy.  I mentioned this to the ultrasound technician last week and she said she would keep trying to show me his sweet features...and yesterday he finally cooperated and she was awesome enough to do them in 4D.

I am beyond thankful for those thirty minutes I spent yesterday in a quiet, dark room looking at our sweet boy.  Since we have no idea how things are going to progress, I really want to make it a point to enjoy him now.  I got to see him holding his feet, waving his hands in front of his face and even laying with his toes on his forehead.  It was just such a precious time to relax a little and stop worrying about potential "issues" and just focus on his sweet little nose and chin.  Here are a few pictures of my little valentine.

Please continue praying for our family and for our other precious valentine, The Babe.  She isn't feeling well today and that's hard on everyone.  I have another appointment next Tuesday to check on Will, so no updates on him between now and then will be a good thing!

I also finished a crafty project that I want to share later this week...  I finally got around to whipping out my scissors and mod podge and it felt ohhh so good.  :)

Bleed, Bleed Go Away

It has been over a month since I last referenced the subchorionic bleed that has plagued me throughout this pregnancy.  If you're new here and want to catch up, this was the first post about it and this was my last.  Mr. Man and I have been a little surprised that the bleed issue wasn't really a big concern to the doctors lately; it seemed everyone just started focusing on Will's bones and chest.  In fact, I don't even think the doctor or ultrasound tech looked at the area where the bleed was at our appointment earlier this week.  Knowing us, that's a recipe for sure chaos...right?!  :)

Last night, Mr. Man and I were talking about Will and I was commenting about how much I had immersed myself in learning more about osteogenesis imperfecta (OI).  I was telling him all about moms and kids I had encountered online and was remarking about how I was investing in the diagnosis we had been given.  One of the last thoughts I shared with him, though, was this nagging worry in the back of my mind that Will could still have a lethal form of OI.  This week, I became so engrossed in how we are going to take care of our sweet little boy that I had been able to push that fear away.  The doctor also helped shove it into the back of my mind by saying he didn't think Will has a lethal form at this point.  Not more than five minutes after I talked with Mr. Man about how scared I was that we could still lose Will, I discovered that I had some light bleeding.  Not good.

My mind immediately started swirling.  I had been getting ready to take a shower and decided to go ahead and do that..just in case.  I also started throwing some things into a bag we could take with us to the hospital if we had to rush out.  I called our amazing next door neighbor to give her the heads up that we may need her to come spend the night with The Babe.  Once I had prepared myself in case we had to leave, I decided to lay down in bed, drink some water and try to calm down.  It must have worked because I haven't had any bleeding since.  Thank God.

I did call my doctor this morning, though, and they wanted me to come in immediately for an ultrasound.  Thankfully, Mr. Man was able to work from home today and keep The Babe so I could go.  After spending more than an hour doing scans, they confirmed that the bleed was indeed still present.  It's much smaller than it had been, but it's very close to my cervix and Will's head (he has been in a head down position all week and has refused to budge despite lots of prodding and pushing from the doctors and technicians).  The big concern right now is a possible placental abruption; this is rare but happens when the placenta begins to pull away from the uterus depriving the baby of oxygen and nutrients.  That doesn't appear to be happening right now, but they're going to keep a super close eye on me.  I have to go again on Monday to see how things are looking.  Please pray that my body cooperates and sweet Will stays put a couple more months!  He needs way more time to develop those lungs!

A couple of interesting things came out of this appointment.  I had a different doctor and ultrasound tech than what I've had the last couple of appointments and this tech had a bit more difficulty finding significant issues with Will's bones.  She couldn't confirm that she did indeed see fractures and she wasn't as alarming about any potential bowing.  We talked at length about how unpredictable ultrasound can be...with a small movement of the wand you can make bones do a lot of different things on ultrasound.  I left feeling a bit better that maybe Will doesn't have severe fractures at this point, but I totally know that all of these things are just guesses.  We won't know exactly what is going on with him until he's born.  It was just very interesting to have another opinion from a different tech.  I want so much to be optimistic over the things she said, but it seems every time I get my hopes up something happens.  Instead, I'm going to go with the only One that actually does have some power over all this.  I'm going to pray that He can still work a miracle for sweet Will!

On a different and happier note than our recent drama, I came home to a box of brownies and a little girl ready to have her first set of almost pigtails.  The Babe's hair is finally get long enough to start playing with and this is the first time she's ever cooperated enough to let me put in some hair bands.  Our little girl is growing up!

Please continue praying for us and sweet Will.  I already love that little boy to the moon and back.

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The Latest Diagnosis: Osteogenesis Imperfecta

I know many of you have been keeping up with our story and have been praying for us today so I wanted to give you a quick update.  First, I absolutely have felt your prayers today.  I have been a million times stronger than I ever imagined, and I know it is because of Him and all the prayers that have been going up for us.  So, thank you.

The short update from our appointment today is that the most likely diagnosis for Will is osteogenesis imperfecta (OI).  The main characteristic of this disorder is fragile bones that break easily.  I was not totally shocked to hear this diagnosis because I heard from two different moms this weekend that mentioned OI; one of which said her son had short, bowed femurs around the same time we saw Will's and then at her 26 week ultrasound they saw bone fractures.  I was ready to ask lots of questions today about bone calcification and potential breaks, but it became apparent to me pretty early in the ultrasound that there were bone issues.  The technician kept looking at one of his humerus bones (the long bone that runs from your shoulder to your elbow) and I saw that it looked grey and not totally solid.  The doctor confirmed a bit later that Will does indeed have a fracture in one of his arms and also in one of his femurs.  I am so sad that our little boy is dealing with broken bones in there already.

OI affects people throughout their lifetime, but particularly so when they are young and their bones are growing.  It is caused by a gene mutation error that affects the body's production of collagen.  There are eight different types with varying degrees of severity.  They range from severe, lethal forms to mild forms with few visible symptoms.  We don't know what type of OI Will has and we won't likely be sure of that until he's born and more testing can be done.  His chest is still measuring small, though, which is worrisome in terms of potential severity or lethality.  The doctor did say today that at this point he doesn't think it's lethal.  We will keep a close eye on his chest, though, and we pray that his lungs will be able to develop enough to support normal respiration and life.

I was also beyond blessed to have been connected with a local mom that has been through a very similar diagnosis less than a year ago.  I have already spoken with her on the phone and we're working on coordinating a time to meet face-to-face soon.  She has been a blessing already and called me so quickly to offer support that I was still standing in line checking out at the doctor's office when I got her call.  I am beyond thankful for her and can't wait to meet her and her precious family.

I will update on more details later.  Please continue to pray that God will keep our little boy safe and free from pain.  Thank you also for your continued prayers for us.  I have totally felt God's presence and calming force over me today and it has helped beyond measure.

Our Next Big Ultrasound Is Tomorrow

Tomorrow is the day we have been thinking about since our last ultrasound.  Our appointments start at 10:15 and we're expected to meet with our high-risk doctor for more extensive ultrasounds, and we're also supposed to meet with other staff about totally transferring our care and delivery to Duke.  I have a feeling it's going to be a pretty long appointment.

I've been mentally preparing myself for this day for nearly a month.  There were a couple of weeks when I was able to push it to the back of my mind, but as the days ticked off the calendar, I found my anxiety levels increasing again.  It's one thing to know what's probably going on in there with Will, but it's another thing to see it in black and white on the ultrasound screen.  Yesterday, Mr. Man and I talked about needing to try to focus on enjoying seeing Will on the screen tomorrow, instead of being so focused on the measurements, percentiles and shapes of his bones.  It's so easy to sit there and just stare at the numbers instead of looking at his face and watching him jump around on the screen.  I pray that tomorrow we will find the peace to just enjoy seeing our precious boy.

I have prepared a bunch of different questions for the doctors tomorrow, and I hope things go well enough that I can guide our way through them.  Some part of me just fears that what they see tomorrow is going to be worse than last time and all of my questions will fly out the window.  I hate crying and getting upset in front of the doctors, so I pray I have the strength to stay composed enough to ask the questions that have been burning through my mind the last few weeks.

Emotionally, I am feeling quite unprepared.  I thought I had it all together but found myself breaking down last night after the happy ending of the movie, Bridesmaids.  If you've seen it, you're probably questioning my sanity.  What in the world would make a person cry at the end of the movie that self proclaims it is the "best comedy of 2011"?  Last night, I was upset because they all got their happy ending.  Lame, huh?

I want a happy ending, too, but I'm afraid.  I'm afraid for Will.  I'm afraid for myself.  I'm afraid for Mr. Man.  I'm afraid for The Babe.  The fear of whatever is before us is paralyzing at times, but I'm doing my best to remember that I alone cannot take on all of it.  I have to turn it over to God and put my faith in Him to lead us through.  The worry is also totally fruitless.  I remember this bible verse from when I was little:

I lift up my eyes to the hills.  From where does my help come?  My help comes from the Lord, who made heaven and earth.  Psalm 121:1-2

Please pray for us that we're able to remember that the Lord is our strength and he can provide comfort and peace to us today, tomorrow and all the days ahead.  Please also pray for the health of little William.  The thought of potentially losing our precious little boy is overwhelming, but we need to remember that God has His plan for our family and we need to trust in Him to guide us.

I will try to update more tomorrow evening.

Skeletal Dysplasia Registry

I have been much better lately about NOT letting myself become totally obsessed with online research about skeletal dysplasias.  I know full well that no research I can do will ultimately determine the outcome for Will.  I want to make sure we get him into the best hospital for delivery and that we know the right questions to ask when he's born.  I also want to do my best to get a diagnosis on the specific type of skeletal dysplasia he may have prior to his birth.  If you just recently started following the blog, you may want to read this post about our decision not to pursue an amniocentesis.  That testing may have helped us nail down the type of dysplasia, but it wasn't a definite and there were some risks with the procedure that our family wasn't prepared to take.

I have been beyond blessed to meet many other moms out there in cyberspace that have been through similar journeys.  They have helped me join a phenomenal Facebook group and Yahoo! health group that have been key in helping me think through this complex journey both medically and emotionally.  I could not be more grateful and I cherish every single one of their emails, posts and comments (even if I'm slow to respond sometimes!).

The big thing that I learned from these groups was about the International Skeletal Dysplasia Registry at Cedars-Sinai Medical Center.  They have medical staff that will evaluate your ultrasounds and will make a diagnosis on the type of skeletal dysplasia at no-charge.  I believe this is part of their research and I have been in touch with them this week to ensure coordination for our ultrasound materials that will be taken on Monday morning.  Hopefully, we will then have a potential diagnosis on type from Duke and then another from Cedars-Sinai.  If the two match, then I guess we may have a pretty good idea on his more specific type and the likelihood on the elephant in the room (fatal vs non-fatal).  I also totally know that all these things are guesses.  No potential diagnosis is 100%, doctors are human and most importantly God is in control.  Even a "normal" pregnancy is a miracle and there's no reason why I should take any diagnosis or thoughts on outcome as foolproof.  I refuse to put all of my eggs into the diagnosis basket, but I do want to do my best to be informed.

I just wanted to log this post on the blog in case any moms in similar situations read this and aren't aware of the services provided by Cedars-Sinai.

Things I Am Thankful For Today

--A beautiful seventy degree day in early February.

--Listening to the rustling leaves and windchime through the open house windows.

--Our couch finally arriving from West Elm...it only took five months.  This will get a post on its own!

--My beautiful and enthusiastic laundry helper!

--The calming effect prayer has on me late at night while trying to sleep.

What were you thankful for today?

The Why Us Question

It is so easy to get caught up in that "why us" question.  Sometimes, it is something as trivial as seeing a teenage girl in Target wearing a t-shirt announcing that her brother hit a home run that will send my mind reeling.  Will The Babe ever wear a shirt proclaiming that her brother is a sports hero?!?  WHO KNOWS?  WHO CARES?  I realize it is totally and completely petty for me to think that way and as much as I write on this blog about being strong and faithful, I am not always that person.

Last weekend, I was particularly bad about asking the why us question.  Mr. Man got to witness a full on pity party thrown by yours truly.  Towards the end of my self-induced party for one, I remember proclaiming that I just needed a bible verse or some amazing words of wisdom from somewhere to make me feel better.  Something to make me feel like less of a jerk for asking, why us?

Then, Sunday night I found this scripture buried in a book I have been reading, A Good & Perfect Gift.  It is the story of the blind man that was healed in John 9.  In short, the disciples basically asked who had sinned so that the man had been born blind?  Jesus replied that "neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him" (John 9, 3).  When I read that story and those simple words, I was totally and completely reminded that God has a much bigger plan for William.  Instead of asking why us, I should be excited to see the works of God that will be revealed to us in His time.  I don't know what the plan is yet, so until then, I still need to work on my patience!  If you have any words of wisdom on getting some patience, let me know!  :)  

I am truly a work in progress.

Getting Ready

I feel that sinking feeling slowly creeping back in...the worry, the dread, the sleepless nights.  Next Monday, we have another ultrasound to check on William.  Hubby and I have been doing pretty well the last few weeks living it up in that crazy little state we find ourselves in when we haven't had a doctor's appointment in awhile.  It is not like we forget what is going on in my belly...it is just that we relax a little without having medical professionals tell us about potential outcomes and seeing William's legs and chest on the ultrasound screen.  BUT, I got the call Monday afternoon, the automated appointment reminder, and slowly but surely the doubts and fears started overshadowing me again.

Yesterday, I had a great opportunity to meet up with an inspirational cousin of mine.  She lives a few hours away, so we don't meet up often.  I call her inspirational because she has dealt with very similar feelings and worries.  Just over a year ago, she and her husband were blessed to welcome their second child into the world.  Their precious little boy was born with a form of spina bifida.  This week, they have been at Duke for some surgeries so The Babe and I went over to pay them a visit.

It was my first time at Duke and since I'm such a planner I decided to also use our trip as an opportunity for getting acquainted with the place where we're likely to be spending some time in a few months (fingers crossed for no sooner!).  She showed me a few tricks for getting around and I feel a million times more prepared for the logistics of our trip.

Duke University Hospital (source)

I also went into the Children's Hospital to visit her son.  It was sobering to see all of the little kiddos in there, but in some ways it made me feel a little less alone in this journey.  I realized that even though what is going on in our lives feels so huge and overwhelming there are many, many others going through similar challenges.  I left thinking back to my last post about generosity and trying to think about what I could do to help all of those little kids and their families.  How can I help them feel less alone?  How can I help them find some of the peace and comfort we have found through turning our fears and worries over to God?  I don't know the answers to those questions yet, but I have a sneaking suspicion it is all part of His plan.  :)

We don't know what is ahead for us next week.  I am scared for what we may see or be told, but I know that I just have to keep remembering the peace we have had for the last few weeks knowing that the future is not in our hands.  My cousin also shared these great bible verses with me that she had received while she was pregnant with her son.  It really helped me focus on the fact that God has an amazing plan for William.

"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" (Psalm 139, 13-16).

Please continue to pray for our family and especially next Monday morning.  Those ultrasound days are always really difficult.