Life as a Leach

Thanks to Symmetric Mom for making me a blog button!!  If you look on the right hand side of my blog, you'll see a cute picture with "Life as a Leach" written on it.  Here's how you can use it: If you have a blog, you can save that photo by right-clicking and saving it on your hard drive.  Then go into the design and add a gadget.  Click "add a photo" and insert my blog button into it.  Then write my blog address as the url and it should work!  So cute, Symmetric Mom!  Thanks!!  (Yes, I know her IRL* name, but she's trying to keep a super-secret identity on her blog...I don't want to give anything away!) *In Real Life

I really hate goodbyes.  I always feel awkward-- do I hug, do I not?   Plus, I can't keep my emotions in check long enough to be able to say a sincere goodbye without crying.  If it's the least bit sad or bittersweet, the tears will start a'falling.  It's guaranteed.  Now that we're probably going to be transferred to Mount Washington at the end of the week, I will be having lots of goodbyes to say. Goodbye to the amazing nurses who have taken such good care of Abby.  Goodbye especially to Megan, Carrie, and Wendi, who have gone above and beyond in taking an interest in my girl and our family. Goodbye to the sweet respiratory therapist, Natalie, who loves Abby so much and tells her often! Goodbye the the desk staff whom we have seriously grown to love! Goodbye to the security guards--the gruff and not-so-gruff! Goodbye to my wonderful nurses from my lengthy stay in the anti-partum unit (which is right next to the NICU, so we see them all of ...

I am convinced that the government made the Social Security application absolutely ridiculous in hopes that people would just decide not to complete it. I can just hear them now: Government official #1: [evil laugh] Hehehe!  Let's see how terrible we can make this form. Government official #2:  [rubs hands together villainously] Oh, yes!  Let's!  The more difficult it is, the fewer people will apply!  Then we can use the money we save the country on catered breakfasts for the staff! Government official #3:  Ooooooh, I have an idea!  Let's make them collect the name, address, and phone number of every single doctor the patient has ever seen!  Government official #2:  Great idea!  Then we can make them type each one in individually, even if they all have the same address!  [cackles] Government official #1:  Let's not forget that we need to require all of the medicines the applicant has ever taken.  If they're si...

I keep forgetting to blog about the church service last Sunday. I must remedy that immediately! The worship team at our church performed "Our God" as a special music selection. You may remember that we have adopted that as our family theme song and our worship leader knew it! He shared a bit of our story with the congregation, then let Caleb introduce the song in his own way. We had a video of Caleb singing "Our God" that my sister took, so they played that on the screen before the worship team started singing. Watching Caleb sing was enough to make me cry (in all honesty, I cried wayyyyy before that even started...), but the whole thing was just a really sweet gesture of love and support to our family. Looking around at the faces of people in the congregation and the choir, I think it meant a lot to everyone else as well. After all, so many of them have been traveling this journey with us! If you want to listen to "Our God," check this out!  It's ...

Today was my original due date, as determined by my first [of many] sonogram.  When I think about how Abby wasn't really supposed to be born until today, I am amazed that she is nearly six weeks old!  Of course, after learning about her small jaw, we were never going to go past November 8th.  Still though, it's crazy to think about how big Abby would be if things had been different.  She was 4 lbs at 34 weeks at half a pound a week, she could have easily been 7 lbs at birth!

Natalie is the sweet respiratory therapist who gave Abby several cute outfits--one of which was a Christmas outfit!  So, I dolled my girl all up in her red outfit and did a photo shoot.  She didn't actually fit in the stocking like I had hoped, but I think I still got some cute ones.  These are a few of my favorites.  I wish that my background could have been better, but I'm limited in the NICU...  I might try again some other time with either a white or Christmas blanket.  Her pulse oxometer is on her foot and it glows red, giving the reindeer a Rudolphish appearance! Seriously, how can you not fall in love with that little face?!?  Isn't she the cutest?  Don't you just want to hug her???

Tonight, Caleb and I decorated our little room at RMH for Christmas while Matt visited with Abby.  It was so much fun!  Christmas decorating is my favorite and something I look forward to all year.  I felt like something was missing all day yesterday because we weren't doing the traditional day-after-Thanksgiving-decorating that Matt hates so much!  It's not much taller than Caleb (I think it's 4 ft tall), but we are definitely feeling a bit more in the Christmas spirit now that we have a little tree up! We even hung up a string of lights, which thrilled Caleb to no end!  Caleb summed it up tonight after Matt got back:  it feels like Christmas now!

3:  Poopy diapers I changed in a 10 minute time-span today 0:  Desats Abby had today (yay!) 4: Pieces of episodes of "What Not to Wear" that I watched today while folding laundry, writing thank you cards, picking up our room, etc. 1:  Pieces of pumpkin pie I ate today 2:  Bars of power my cell phone has 1:  Family I know from home that served dinner tonight--small world! 6:  Months my kind shuttle driver has been in the U.S. after moving here from Kenya 3:  Kids in a very sweet family at RMH that we're enjoying getting to know 4:  Antibiotics I take each day 5:  Sweet potatoes sitting in water on the kitchen counter as the remnants of a science experiment a college group did 1:  Time a person told me today that I looked too young to have a baby (slow day today!) 13:  People asking if I can spell Cerebrocostomandibular Syndrome without looking (Yep!)

Most babies' hair gets lighter as they get a bit older, right?  Not Abby's!  Her hair has gotten progressively darker. When she was born, she had salt-and-pepper hair that almost made it look as if she had streaks of gray.  See it? Check out her hair now.  It is definitely darker! Alright, confess.  Who brought in the hair dye?!?

Oh, it's been a while since I've done this, and I am pretty sure the last time I did, about 5 people read my blog.  So, for those of you who are new to the neighborhood, "stream of consciousness" posts are just the written form of whatever is going on in my little brain!  Enjoy...or be confused... Abby now weighs 5 lbs, 1 oz and has officially hit the mark!  For your typical preemie, five pounds is kind of the magical number that points toward going home.  We know that this is just one of many, many pieces of the puzzle for us, but it's still a milestone nonetheless!  I gave her a bath today and she liked it even less than usual!  She threw quite a little hissy fit but settled down as soon as she was wrapped up and cozy again.  By now we know all of the nurses pretty well and don't have too many new ones anymore.  Today they only had 8 hour shifts because of the holiday, so we'll have 3 different nurses.  Her first two are wonderful, ...

How can you not love this girl?! There's no way I can focus on just one  area of thankfulness this week!  After all, it is Thanksgiving!  I'm just going to list a bunch in no particular order. I am thankful that... First of all, Abby is with  us!  There was a time when that was uncertain, so every second we have with her is a miracle! She is actually able to be off of the vent for 4 hours at a time.  She's not completely vent-dependent. I have been able to connect with Tara and Reagan, two CCMS moms who understand what we're going through. We have so many family and friends who have been absolutely amazing and supportive of us through all of this. RMH has been such a blessing to us and that we have met so many wonderful people here. My sister has so faithfully watched Caleb and provided him with stability. We are able to be together as a family on the weekends. There are so many wonderful NICU nurses, nurse practitioners, respiratory th...

So, tonight I was walking the fine line between letting some things go with Caleb's behavior because of his world being turned upside down and trying to maintain some sense of control.  For some reason, he really wanted to sleep in our suitcase (it's a big one and it was open...don't worry!), so I relented and said sure.  (That was a bad idea in the long run, by the way--no sleeping was to be had while he was in the suitcase, so I made him get back in his bed eventually!) Anyway, after he settled into the snuggly suitcase with all of his stuffed animals--and there are many--and his cuddle blanket, he remarked, "This is kind of like what Jesus lived in." We need to get that kid to Sunday school! Of course, do you know the Christmas song that popped into my head at that point??? Away in a suitcase, no crib for a bed... It's a new Christmas classic!

We have met some truly beautiful people during our stay at RMH.  The staff has been wonderful--Sandy, the director, is so sweet and compassionate.  They are all pretty much amazing. But I want to share with you some of the "faces" of RMH.  No, I'm not going to post pictures of the families, but I just want to paint a picture of a few of the people we've met. Beautiful S , an 18 year old with Hodgkin's Lymphoma who is undergoing radiation treatments.  This little ball of energy wants to be a mechanic who works on ships and planes!  Because she won't be able to be around the fumes for a while, S decided to get her history degree so that she could be a history professor when she retired.   I love this girl!!  She just moved in a few days ago, but she'll be here for several weeks until her treatments are over.  They are actually just a hop, skip, and a jump away from us in Waldorf! Patient M , the mother of B.  B is learning how to eat at K...

Today, the world lost one of the most wonderful men I've ever had the pleasure of meeting.  Harry Darby was the worship leader at Grace Chapel, where Matt was the youth pastor for three years.  He was such an encouragement to me as a young married woman and even more so after I had Caleb.  What I remember most about Harry was his energy!   This was a man who could jump around at 8 a.m. on a Sunday morning like he was already on his fourth cup of coffee!  Caffeine wasn't what gave Harry his amazing spirit though--God did!  Harry had a love for God that shone through everything he said and did.  To know him was to love him. Harry was diagnosed with kidney cancer, and even through all of the treatments he was giving the glory to God.  One of his favorite quotes, "God is good, all the time!" was his motto right up until the end.  He lived a life of sacrifice and love.  While we will all miss him, we know that he is celebrating in Heaven ...

Turns out, there is wifi on the first floor that is working, not just the internet on the two computers.  I'd love to have it in my room, but this is good enough for me!  Now, for some lovely pictures of some lovely children: Caleb loves to "hold" Abby!  We never did get a picture of him smiling, but he really does love it!  I am one month old!  (November 22, 2010)  A family made three Build-a-Bears for us:  one for Caleb, one for Abby, and one for Caleb to give to an RMH friend.  He chose Baxter, and I think it was a good choice!  Here's Abby with her guardian angel and Baxter giving Caleb a big thank you hug for his bear! We took an afternoon to go to the Baltimore Zoo.  This looks more like Calvert County than Baltimore City!

Last night, I started wondering if I was coming down with a cold.  I drank some tea and decided not to set my alarm for my usual 6:45 so that I could sleep it off.  I slept in a little but definitely felt yucky when I woke up.  It's nothing major, but the sore throat, achiness, and slight cough is enough to keep me away from Abby for the better part of the day.  I am going to stick around here, drink tea, take my vitamins (I take prenatals all of the time, along with DHA, vitamin D, calcium, and vitamin C!), write some thank you cards, and maybe catch a nap.  I will meet Matt over at the hospital later on today, but won't go in without a mask.  Better safe than sorry when it comes to my girl!  Let's hope that this is a one day thing and not my typical asthmatic bronchitis-turned-pnemonia that I usually get around this time of year!

...the wifi is still not working at RMH.  They do have a computer station on the first floor that has working internet, but only 2 of the 4 computers work and there is usually a line to use them.  The hospital wifi works great, but Blogger and Facebook are blocked--remember?!  I have been posting from the first floor computer when I can get on (usually writing several posts at once and time-delaying them) but I can't load my pictures from here. I promise though: as soon as the wifi is up and working again, I have loads and loads of cute pictures of my Abby Girl to show you (as well as a few of the equally adorable Caleb Boy!) In other news:  I cannot WAIT to get the pictures back from the photographer who snapped pictures of our family in the NICU a few weeks ago.  I am expecting them sometime this week, and may just have to figure out some alternative way of  posting them if the internet is still not working.  I'm so excited to see them!!!!

You've probably already read a bit about Reagan .  Remember, she's the mom of one of only a handful of kids who are currently living with CCMS?  I love that when you search for CCMS, her blog pops right up on top!  What a great way to get the word out about this crazy syndrome! Anywho, Reagan's doing an interview with another woman about their life with a special needs child.  Hop on over to this blog to read Reagan's truthful answers to some difficult questions.  I can relate to so much of what she says!  Our circumstances will most likely be different once Abby is home, but our hopes and dreams for our daughters are very much the same.

This is the official title of Abby's syndrome, otherwise known as CCMS.  Quite a mouthful, eh?  Let me break it down for you. Cerebro:   relating to the brain.  We have no idea how Abby's development will be at this point.  Only time will tell, but we are extremely thankful that her brain is structurally sound. Costo:   relating to the ribs.  In Abby's case, about half of her ribs appear to be floating in pieces on an X-ray.  It's almost as if someone took a baseball bat to her ribcage.  The pieces are actually connected with fibrous tissue, but her ribs cannot protect her lungs and heart like they are supposed to.  Her spine is also affected by this. Mandibular:   relating to the lower jaw.  Abby's jaw is very recessed and small.  Because of this, her tongue (which is normal sized) is too big for her mouth and causes an obstruction of her airway. We aren't exactly sure what kinds of surgeries Abby will be hav...

So, I had an insurance meeting today.  Yes, another  one.  Thankfully, this one actually involved completing an application!  It's not done yet (we have to submit a bunch of stuff that Matt is getting for me from home), but at least it is progress! I headed back to RMH afterwards at about 1:45 to do laundry and work on some other insurance claims and the like.  Let me just tell you that, other than switching laundry, I spent the entire time  until dinner at 6:00 doing something with insurance!  I faxed, I searched the internet, I filled out online forms, I talked to people on the phone, I completed paper forms.... BUT, I did feel fairly productive today.  I actually got  somewhere with some of the phone calls, several important pieces to this complicated puzzle were faxed, part of the online form was completed (it's really long and in depth!), and paper forms were completed! So, yay.  It's not the end of the tunnel, but at least th...

This is the complete posting of "You Might Be in the NICU too Long When..."  The new ones are at the top, with the rest of the collection after them.  I'll continue to add to it until we're out of the NICU!  :) Your son knows where all of the broken slabs are in the sidewalk that make for fun rocking during the walk to the hospital. You buy one of those big refill bottles of soap so that you won't run out...and actually think to yourself,  I'd better not run out! You actually encourage such landmarks because it helps make the walk quicker! You can distinguish between a real and false Brady or Desat (and, for that matter, you know what they are!) The terms Durable Medical Equipment, Private Duty Nursing, and Model Waver are a part of your everyday vocabulary. You dream about filling out insurance forms. You start referring to the Ronald McDonald House as home. As far as you know, absolutely nothing is happening in the outside world.  The latest news is ...

If you want to get notifications about blog updates, just send me your email address either by commenting on a blog post or emailing me at juliebleach@yahoo.com and I will add you to my list.  The post is actually sent to you in an email, so you don't even have to go to the actual blog site (unless you want to comment). I hope this helps to ease the Caring Bridge notification withdrawal.  :)  (Which, by the way, is pretty delayed.  I was not up at 3 a.m. every night blogging--it just takes a couple of hours for the notification to be sent!) I'm off to visit with my Abby for a while before settling in for yet another  insurance meeting.  Trach care I can handle.  This insurance nightmare is a different story...

...I gave birth to a beautiful, dark haired 4 lb baby girl named Abigail Elizabeth Joy.  Now that I have had processing time, I want to relive that night a bit. I remember that she flew out so fast (because of all of the extra fluid) that the doctor nearly dropped her!  I'm glad I didn't actually see it, because I would have been totally freaked out by that! I remember that I didn't hear her cry, and that worried me immediately.  Everyone wants to hear the baby cry. I remember that we were unable to see her even for a second before the NICU staff wisked her away.  While we knew that her care was of utmost importance, it was difficult not to be able to bond with your daughter like under normal circumstances. I remember the kind anesthesiologist being the one to give us occasional updates on her condition while they worked on her in the room across the hall.  He was the only one who was able to give us any information, and it was so helpful. I remember ...

On Saturday, we went with my parents to Arundel Mills to get me some snow boots for a winter walking around Baltimore.  In Bass Pro Shop, Santa happened to be visiting and they were offering free pictures!  Caleb has no fear of Santa anymore and was really excited to tell him what he wanted for Christmas. When Santa asked the very question that is on every child's mind all year long, Caleb answered very quickly. I want Abby to come home. Santa glanced up at us and noted the fresh tears falling before he asked Caleb who Abby was.  He explained that Abby was his sister and that she was sick in the NICU.  (We filled in a few details for Mr. Claus!) Unfortunately, the reality is that Abby will not be home for Christmas.  However, we are going to be as close to her as possible (at RMH) so that we can celebrate Christmas with our entire family!  It wouldn't be Christmas without Abby Girl!  We've prepared Caleb for this and he knows that we will be ...

Abby weighs 4 lbs, 12 oz!!  Wahoo!  We are close to that magical 5 lb mark!  Go Abby! In other news, we toured Mt. Washington Pediatric Hospital yesterday (where they will eventually send Abby for our trach classes and her transition home).  It is a really nice facility for when Abby is ready to go there.  We just don't want her to go too early and not truly be ready for it, because it is not a critical care unit like they have at UMMC. In other , other news, the internet at RMH stopped working Friday afternoon just in time for the weekend!  I'm hoping that it will be back up and running tomorrow.  Sorry for the lack of posting.  I'm currently using the computer at my parents' house. (In case you ever wonder how I post at certain times, Time Delay is my friend!  I can set it to post at a certain day and time, which means I can write several posts at once and space them out.  This, for example, was written at 10 a.m. today!)  :)

This is Julie's mom, Dotty, using her blogger account! Many of you have asked Julie and Matt what you can do to help them.  What they appreciate most are your prayers and they have already felt the strength of those prayers.  They feel very uncomfortable sharing their needs with everyone and don't want people to feel they need to do anything.  Julie wrote an entry earlier encouraging people to contact me if they wanted to help and now she is feeling that entry may have been misunderstood.  As I saw her struggling with words to express to everyone that they in no way expect anyone to do anything, I offered to write this entry.  Sooooo....if you would like to ask any questions about helping....feel free to contact me at Schenk007@yahoo.com

Sorry if you have other opinions...this is fact.  :) The thinker I'm tired just thinking about what they're going to do to me in a few hours... Her first doll--Sara would be proud! Semi-sucking her thumb She has taken to holding onto her pacifier. The only problem is that sometimes she accidentally pulls it out! You can finally see my beautiful girl's face sans tape!!!

Sing-Along Matt and I have both taken to playing songs on our iPods for Abby while we're with her. I have found that the music (carefully selected!) really calms her down when she's agitated. I feel like she is even starting to recognize some of the songs, like "Our God." Maybe it's coincidental, but she gets really excited and usually smiles when it is played. :) Another song I play a lot is "What Faith Can Do" by Kutless. Here is a link to the music video on You Tube. http://www.youtube.com/watch?v=u1JBSQMkQEo And here are the lyrics: Everybody falls sometimes Gotta find the strength to rise From the ashes and make a new beginning Anyone can feel the ache You think it’s more than you can take But you're stronger, stronger than you know Don’t you give up now The sun will soon be shining You gotta face the clouds To find the silver lining I’ve seen dreams that move the mountains Hope that doesn’t ever end Ev...

Q & A: The Medical Edition! You guys had some awesome questions! I answered every one of them, but it's too long to put into one post. I have them all answered in a Word document and will cut and paste them into several different posts over the next few days. Plus, this way I can string you along as you eagerly await the next post! :) This first one is all about Abby's medical care. If you have other questions after reading these, send them my way and I'll try my best to answer them! Have you had genetic testing? Yes! We’ve had lots! I had an amnio done while I was in the hospital during one of my reductions (might as well put all that fluid to good use!). It came back fine. They tested Abby’s blood shortly after birth for the same things and it was also clear. They have sent more blood to a special lab in Atlanta that does extensive testing. This test will show the presence of CCMS and other very rare syndromes. When we get results back from that, they wil...

Alrighty, I have semi-figured out how to do email notifications.  Basically, I will make a yahoo group for the blog and send out a forwarded notification to you.  I think there is a better way to do it and I'm getting there, but this is doable. You can also click "Subscribe to My Blog" on the right side and it will show up on the front page of a couple of different email sites.  To my knowledge, it won't email them to you, but it will display links to the last few posts.  It's still kind of fun though.  I subscribed to my own blog just because it made me happy! Sooooooooooo, if you are so hungry for my blogs that you absolutely must know the moment I hit the publish button, just send me your email address and name. OR, if you just find it more convenient to have them emailed to you, you can send me your email address and name too.  I'll just pretend you can't live without my writing.

Ah, how I have missed Thankful Thursdays!!! I am always thankful, but I have pretty much been a blubbering, I-am-thankful-for-everything-and-can't-say-it-without-crying mess these days!  My sister commented on how I am much better at writing out my feelings than I am saying them because I don't start crying...she's sort of right.  I still cry, but you can't hear or see it.  :) Anyway, this week's Thankful Thursday is totally dedicated to my amazing husband.  We've been married for 6 1/2 years and I don't think that either of us invisioned this sort of situation when we said our vows.  Sure, we went through your average young married couple trials and definitely struggled to make ends meet those first few years.  But who really thinks about in sickness and in health translating to as your daughter fights for her life ?! So, I'm going to brag on him a bit.  Matt has been a rock through all of this. When I say all , I mean right from the beginning....

To the right of the blog is a little button that allows you to follow me.  Please do!  I like to know who is reading...I'm  nosy that way.  Also, in order to comment, you have to be a registered user.  It's not hard to do, but the reason I have it set up that way is that I had a few anonymous comments that creeped me out a bit in the past.  This way, I can see who is commenting.  The positive:  I can comment after your comments if you ask me a question or say something I want to respond to!  Yay!  :) Tomorrow I have a big insurance meeting with my social worker and case manager to try to wade through an ocean of paper work, claims, policies, approvals, and other various kinds of red tape.  I will be spending my evening making sure I'm prepared!  It probably would have been easier if the social security, Medicaid and insurance phone calls I'd made (daily for the last week) had been returned, but I'll just have t...

In light of our medical bills and at the encouragement of many of you, I have decided to try to put my writing skills to work.  At times, I might be writing a review of a certain product or website.  These will be sponsored by advertisers and I will be paid.  I am required by the company I am working with to write a disclosure post so that everyone knows.  If this bothers or concerns you, please know that I am in no way trying to make money off of our current situation.  I hope that by now you can feel the depths of our love for Abby through my writing and we would much rather be a boring, normal family!  God has other plans for us though and I am actually hoping that taking this avenue gets our story out and that we can be an encouragement to even more people!  I am learning that God has given me the gift of writing and if I can use that to help ease our financial burden a bit, I figure it is worth a shot!  I will not accept any advertiseme...

Caring Bridge was good to me, but I like the freedom of Blogger.  I have much more room for creativity on here, can post pictures easier, and can respond to individual comments.  I know, I know, you will miss having my blog notifications emailed to you.  If anyone knows how I can set it up so that we can do the same thing with Blogger, let me know.  Please, please, please don't stop reading just because you don't get them emailed to you!  I promise to continue to update you often on Abby's progress if you promise to continue to eagerly await the next post.  :) I'm cutting-and-pasting the last few updates here so that you can read them if you missed seeing them on Caring Bridge. Sing-Along Matt and I have both taken to playing songs on our iPods for Abby while we're with her. I have found that the music (carefully selected!) really calms her down when she's agitated. I feel like she is even starting to recognize some of the songs, like "Our God."...