One Last Blog for 2013

I'd like to start off by saying a sincere THANK YOU to everyone who has checked in, said a prayer, made a call, or sent a card since Miles was born. You have no idea how much it is appreciated. I know it's been a very long while since I've blogged, but I wanted to give one last update on my sweet boy for those not on Facebook. After this one, I'm hanging up my blogging shoes...at least where our little miracle is concerned. The pregnancy, surgery, and delivery were part of my journey. But from here on out the story is his to tell. I do feel the need to tell anyone who has been concerned with his health how fantastically he is doing. He has great range of motion and function; it's looking like Adam and I may be very busy chasing him around the house sooner than later! He is a smart little guy who babbles continually (wonder where he ever got that from), loves to play, and is content no matter what the circumstance. We could all actually really learn a lot from this little four month old. I know I sure have!

You see, 2013 was the absolute best year of my life...but it was also scattered with some of the lowest points I've  ever faced; I'm sure Adam would tell you the same. But once Miles got here none of that mattered. Our brave little man not only taught me how to love more deeply, he also taught me to be stronger than I ever thought I could be. He is so resilient and brave. I never ever thought an infant could be anyone's role model. Yet as I sit here and type I am looking down at my hero sleeping soundly on his boppy with his favorite toy in one hand and his pacifier in the other. 

Miles has taught me more life lessons in four months than I've learned in thirty-one years! The most important of which is to STOP worrying (so much anyway). Anyone who knows me well knows that I was a worrier to the point that it was downright annoying at times. I worried the whole time I was pregnant right up to the anatomy scan. In the end, my worrying changed NOTHING. All I did was waste the time during my pregnancy when I could have been out and about enjoying the fact that I had a beautiful baby on the way. I learned my lesson, though! I've never been so content or relaxed in my life. Worrying didn't fend off Miles' diagnosis or help him in any way, shape, or form. So why bother doing it? We now enjoy each day and TRY not to worry about things we can't control. It's not always easy, but life is so much better this way.

This sweet boy also taught me to QUIT feeling sorry for myself/complaining about things I can't control.  I used to let ridiculous things like the weather, a hole in a favorite pair of pants, a rude comment,or even a burnt dinner get me down and out. Now Milesy and I are living for each wonderful moment. He is one of the most cheerful and good natured babies I've ever seen...even when he is in his harness for a dislocated hip or having medical testing done. NOTHING gets in the way of this kid having the time of his life (except maybe an empty tummy or a poopy diaper)! He doesn't know that it isn't fair that he has to do things that other babies don't. And he doesn't CARE about it. He appreciates what he can do and what he has! We should all be so grateful for what we've been given and stop complaining about little things. There are many out there who are facing much tougher battles.

Tougher battles bring me to the last thing that 2013 and having my sweet boy have taught me. Attempt to be kind to others ALWAYS. You never know what challenges someone else is facing. I've seen things in some of the Children's hospitals we've been in and out of that have literally brought tears to my eyes. We've held elevator doors for mothers yelling into cell phones and let fathers who have been downright rude push in front of us in cafeteria lines. And yet we've met each one with a smile. You cannot look at someone else and assume that you knows what "type" of person they are. We are all fighting our personal battles. Some of us are just better at handling them than others! And the proud mommy in me has to say that Mr.Miles is a true soldier. I hope his attitude and demeanor stick so that he will someday handle his own battles appropriately and not be the pushy guy in the cafeteria. I also hope that he will continue to greet even the most moody individual with his million kilowatt smile.

I know that this is the time of year that everyone sets their New Year's Resolution. I've avoided them in the past because I've never stuck to them. But this year I think mine may just stick. I'm going to try to remember the lessons my sweet boy has taught me throughout the year 2014 and the years to come. If you haven't set a goal for 2014 yet, I encourage you to do the same. Life really is much better this way! I hope you all have a very happy new year, and God Bless!

Checking in at CHOP

Our weekly appointments at CHOP have become comfortably routine. Miles and I see an ultrasound tech, a nurse practitioner, and a doctor each and every week. It's hard for me to fathom that women having "normal" pregnancies would only now start having weekly appointments with just one doctor and don't have weekly ultrasounds.  I've been absolutely spoiled by the staff at CHOP since week 22!

The best part of each appointment is definitely the sense of calm that I feel upon leaving the hospital each week. Miles has been completely stable and I've had no complications (Knock on wood!). This is far more of a blessing than one could ever imagine. The average birth week for a fetal surgery baby is week 34. Yet here we are at week 35 just hanging out as Miles grows bigger and stronger each day! It's always a joy to be able to watch him wiggle around on the ultrasound screen!

I meant to snap a picture when Miles was actually on the screen, but I got so caught up chatting with our tech that I completely forgot the picture! So a blank screen it is! I also took a couple of pictures of one of the huge exam rooms in the maternal/fetal medicine center. It truly is an awesome medical facility.

It may sound crazy, but I really will miss our weekly appointments at CHOP when it is FINALLY time for us to go home. Every member of our team has become like family, and they all seem as excited as we are for Miles to make his grand entrance! Hopefully the little guy will continue beating the odds for just a bit longer though!

The Endless Summer

All of my coworkers went back to school on Monday, and the students' first day is tomorrow. It feels strange not to be there, but I'm trying to enjoy my last bit of total relaxation before Miles makes his grand entrance. It's just a matter of time now!

All went well at this week's appointment.We've officially reached 34 weeks, which one of our doctors once described as "smooth sailing" for birth from here on out. I'd still like the little guy to hold out a few more weeks....even though my stomach is now the size of a perfectly rounded basketball! I'm feeling great for being this far into pregnancy, and Miles is still doing beautifully. We really have been blessed thus far.

Finally ending our summer adventure and going home will be quite an adjustment, but we are excited to be nearing the end of our extended "vacation". Hopefully, though, someday Adam and I will be able to bring Miles back here to Rittenhouse Square and walk the streets where he spent over three months living with mommy and grandma. I also hope that he will realize how fortunate our family is to have been given this life changing opportunity. Though the summer of 2013 seems endless, it has certainly been worthwhile.

Pit Stop: The Fetal Diagnosis and Treatment Center at CHOP

First of all, I need to apologize. I never thought I'd actually be blogging this experience, so I haven't taken pictures to go along with this portion of our story. I promise I'll start so you all can visualize where we are and what we are doing. This is a huge sacrifice on my part as I hate pictures in general and will be 31 weeks pregnant tomorrow! I'm sure you will be bombarded with pictures when Mr. Miles gets here, though!

Now on to some more of the story:

My mother, Adam, and I left Pittsburgh and headed to Philadelphia on May 22nd to begin a series of appointments and testing in The Fetal Diagnosis and Treatment Center  at the Children's Hospital of Philadelphia.  The tests  are very intense, and many mothers get eliminated from being candidates for the surgery within the first day. Needless to say, we were all anxious to see if Miles and I would qualify. Thankfully, after a two and a half hour in-depth level 2 ultrasound, an MRI, an EKG and various other observations of both Miles and myself,  we learned that we were, in fact, in the 33%  of candidates who could and would  have the intricate surgery.

A very experienced team of doctors (including one of the best pediatric neurosurgeons in the country and one of the founders of fetal surgery) would cut into my uterus and actually see/work on our sweet baby boy. By patching his defect at 22 weeks gestation, we would prevent any more amniotic fluid from wearing away at his little spine. Because Miles defect begins at L4, the doctors seemed fairly confident that this surgery could help his mobility; it would also alter his Chiari and eventually push his cerebellum into the correct position.

By the time we left CHOP on the second day of consults, we had scheduled surgery for the following Wednesday, May 29th. We were obviously nervous because the surgery does not come without consequence. 13% of mothers who elect to have the surgery have to deliver before 30 weeks, and many do not make it to their scheduled c sections at 37 weeks. This meant that I would have to be on bed rest from the end of May until September. It also meant that it would be in Miles' best interest for me to stay close to CHOP until his birth. Unfortunately, his daddy would have to go home to work, and I needed an advocate to stay in Philadelphia with me full time. Thank goodness Miles' Grandma Donna was willing to give up her own life for at least three months to better the life of her grandson. I am certain that this is one of the greatest gifts our little man will ever be given!

Next up: Surgery Day! But here's a little spoiler for you: Miles (who is still cooking at almost 31 weeks), my mother, and I are currently hanging out  in our apartment in Center City, Philadelphia and passing time while on modified bed rest...though we always look forward to his daddy's next visit!

Home Is Where the Crib Is

Well, another weekly appointment is in the books. I'm happy to say there are no major changes with Miles or me. At this point, no news is definitely good news! We are so fortunate to have made it this far. The little guy needs to hang in there for just a few more weeks. Then he can come on out and meet the world!

I can't believe that we have been in Philadelphia for over 80 days! I've missed out on a lot of first time mommy moments; one of which was decorating Miles' nursery. I did manage to participate from afar though. I chose a paint color before leaving Pittsburgh, and in June my father-in-law painted the walls. The shade is tranquil and neutral...just like I wanted. Thanks to online shopping, I was also able to pick out all of Miles' nursery details. Then various members of both sides of the family came together this past Saturday to make it happen! I couldn't be more pleased with the results.

Just a few more finishing touches and it will be all ready for Mr. Miles' homecoming. I can't wait for that day. It will be so wonderful to change a diaper on his changing table or pick a little outfit out of his brand new chest of drawers. The little things will mean so much after this experience, and for that I am sincerely grateful. We also can't wait to rock in his new glider...if Baxter ever agrees to give it up!

I also need to add in a special thank you to my husband for dealing with all the "clutter" being delivered to the house. You're the best, Adam! Thanks for being the UPS man's BFF for me. I'll be home soon enough to resume the position myself!!!

Soldiering Through Week 32

Adam and I agreed on Miles as a boys name well before we knew our baby's gender. We both wanted a relatively traditional name that wasn't overused. We also agreed that it should have meaning. The name seemed to fit the first two criteria, so we went in search of the meaning of Miles. We were absolutely sold once we learned that the Latin meaning of Miles is"soldier"and the Hebrew is "Gift from God".

We had no idea at that time just how relevant these two meanings would become. Miles truly is a little soldier! At today's growth scan, he weighed in at a whopping 4.3 pounds. Not bad for a 32 weeker who has been through a major surgery! His ventricles haven't enlarged at all since we left Pittsburgh, and the reversal of his Chiari improves week after week. We even saw that he has some hair on his little head! He really is doing fantastically!

We hope that Miles will do just as well out of the womb as he has done in utero. If you look closely to the far right of the following picture (beside the stairwell) you will see a purple sign over a set of double doors. That is the NICU where Miles will be sent after he is born. We are praying for a short, uneventful stay before heading home!

With each passing day it is looking like we may just get our wish. Our little soldier is getting stronger and stronger every day, and he is already one of the greatest gifts we could ever receive.  Just a few more weeks and we get to meet him! He'd better stay put until that scheduled c-section though!!!

Week 31 Check In!

Now that you all know the background, I'll be doing a once weekly check in until Miles is born. All I can say at this point is things are looking great!!! Miles' Chiari and hindbrain herniation are reversing, his ventricles look stable, and we have seen him move his hips, knees, ankles, and even his toes on ultrasound! This momma couldn't be any more proud of her little man!!!

All of his doctors are VERY pleased with his progress, and CHOP has become like a second home to us. I cannot say enough wonderful things about the staff of this hospital. Everyone from the doctors to the cafeteria workers treat us with absolute kindness and caring.

We are hoping and praying to make it to our planned c-section! In the meantime, I'm still on modified bed rest. This means that I have to spend most of my time in bed, and when I do go out I have to use a wheelchair to get around. My one reprieve is our weekly hospital visit where I'm allowed to waddle around sans chair. But all things considered everything is going about as well as can possibly be expected.

Thank you all so much for your prayers and positive vibes. Adam, our family, and I truly appreciate  each and every one of them.  I guess the only thing left to do is the mandatory bump shot. I'll have you all know I made my mother take no less than a dozen pictures until I found one that didn't make me completely cringe! Being camera shy and 31 weeks pregnant is NOT a good combination. Don't mind the closet door...it's been stuck like that since before we moved into the apartment.

Hopefully we will have more great news to share after next week's appointment. 32 weeks is another huge milestone that we are very excited to reach!