The Before and The After

It has been 1 month and 15 days since Hannah's surgery. WOW - it feels as though it has been months ago. I am so thankful that it is behind us now; the worry/anxiety/anticipation is gone. It is amazing what the doctors did to my little girl. They not only reconstructed her skull but also moved her eye sockets. She took longer to recover in the hospital that I would have liked but the experience was unforgettable. The nurses were wonderful, as if they felt what she was going through. They talked with her, they played with her, and when they had a free moment they came in to hold and bond with her. I felt truly blessed to have such a wonderful team of nurses taking care of her.

On her 6th day in the hospital she finally was able to peek through and see some light! That was where most of her irritability came from; not being able to see. Imagine you are in a life where you have no worry no care and no understanding and then next thing you know you wake up from "sleeping" and your vision is gone. She didn't understand what happened, all she knew was she can hear mommy and daddy but she couldn't see us. It was heartbreaking.

We came home on day 7 and she started improving that much more. She started to play more, smile, laugh and talk more - it was amazing the transformation this surgery did not only physically, but motor-skill wise. My baby was happier! We had a follow up appointment with her surgeon a week after we got home and asked if she could have been feeling any discomfort before surgery due to her condition. His response was that it was very possible that she could have been experiencing headaches. That when they removed the bone to start the reconstruction, her brain shifted forward as if releasing all the pressure. I'm very thankful that we had this surgery, although it was tough, it has been such a blessing!! We are very fortunate to have this type of medical knowledge!

Now the reason I named this blog as The Before and The After is so you can see the transformation of my baby girl:

BEFORE:

4 1/2 months

7 1/2 months (shortly before surgery)

AFTER:

9 months (1 month after surgery)

Surgery Day

Today started bright and early - well not so bright but definately early. 3:30 a.m. rolled around very quickly and we were off - getting ready to start the longest day of our lives. We had to be at Vanderbilt this morning at 5:30 a.m. to get Hannah prepped for surgery. That was the HARDEST thing I have ever had to go through.

It was very difficult holding her and hearing her whine because she is hungry and knowing you can't do anything to soothe her. Then, the hardest part came; the hand-off. OM goodness, handing her off to the nurses was sooooooooo upsetting. It was torture. We had to give our baby girl to someone else, to a stranger we've known for a matter of minutes; knowing it would be hours before we saw her again. 1 word: TORTURE.

The waiting was not as bad as I had expected, thanks to all of our friends and family that were here to help us through it. Kept my mind busy as we searched for the best Kroger deals and played board games. Every hour we received an update which was awesome and also they had this wonderful screen that gave us a status of where she was on her surgery. After only 4 short hours, we received the call - Surgery has been completed and was successful. Her vitals were great throughout the entire operation. The Dr.'s did an amazing job.

We had to wait an hour after surgery before we were able to go back and see her. Once we went back I was amazed. She didn't look nearly as bad as I expected although they assured us tomorrow would be the worse day. She still looked like my little Hannah except a huge difference. She now looks more like her big brother, Bo. Her forehead is a lot flatter and her eyes are further apart, but she is still as cute as a button, even with the swelling.

Tomorrow I'm sure will be another difficult day as she will have a lot done to her as well. She will have her bandages removed, the cathader removed, and her drain tube removed. Her eyes will be swollen shut for the next couple of days and of course I'm sure she will still be in pain. Brandon and I still can not hold her, which if you are a parent you know how painful that is to not be able to hold your child, but "this too shall pass".

Hannah will be in the ICU until she is able to open her eyes again and the Dr. gives her the okay to go into a normal patient room, hopefully soon. We are still praying for a fast recovery and as painless as possible.

Thank you all again for your prayers and support. Brandon and I are truly blessed and amazed at how powerful our God truly is. He is our rock.

I will keep everybody posted on her progress and are welcoming visitors.

Love you all.

Opthamologist Appointment

Her appointment well. No eye trouble or vision problems - Whew what a relief! I was happy to hear the good news today. The Dr. was great with Hannah pulling out all kinds of contraptions to keep her interested. So that's one less thing I can worry about now =o)

Although it was a very eventful morning between traffic and accidents and rain - not a very good combination. I'm very thankful that I do not have to drive to Nashville on a daily basis and for those of you who do, I don't see how you do it. I would have to be put on anxiety meds to cope! Everywhere we turned either traffic was at a complete stop or we saw an accident. I don't guess people remember how to drive in the rain!

But all in all, I'm thankful that Hannah's eyes are perfect!

Dr. Check-Up

Friday was Hannah's 6 month check up with her new Dr. and I have to say I really like the facility, staff, and the Dr. We got there and of course a load of information need to be provided since this was our first although the waiting period was almost non-existent.

Her Stats:
Weight: 16lbs 3oz
Height: 24 1/2 inches

I had a really nice conversation with the Dr. and she immediately noticed Hannah's forehead, which was comforting. At least she might know what she is doing =o). She also did a more thorough exam than I have ever seen a Dr. do with either Bo or Hannah. She went on to explain that she suggested we give Hannah both the seasonal and H1N1 flu shots. I'm real hesitant to give her the H1N1 and I voiced my concerns with the Dr. She of course understood and told me it was strictly my decision but she recommended it. I don't feel like there is enough research or knowledge about this new vaccine to give my baby girl. Any thoughts?!?!?!

Within 5 minutes of leaving the office I received a phone call from the Dr. herself to go over one more thing she forgot to mention. She feels that it would be best that Hannah visits an Opthamologist to make sure everything is okay with her eyes since the sutures that closed are in her forehead. I was very impressed. Hannah's former dr. never mentioned any concern in that area and has known about this stuff for 2 months now. I'm pleased to know that this new Dr. isn't going to leave any stone unturned.

Her appointment is Wednesday so . . . until then . . .

6 months and lots of milestones ...

Hannah just turned 6 months old on Saturday! I have no idea where the time went. She is growing so quickly, more so than Bo did, and its sad for me. I want her to be a baby forever, to not hit these milestones because that just means she is growing up. In the last couple of weeks, Hannah has hit 3 milestones all at once. One of which has broken my heart.

First milestone:
She is holding her own bottle already! The girl might have gotten one bottle a day, sometimes two and is already holding it on her own. I'm so proud of her. This is probably one milestone I'm okay with as it helps me out a lot =o)

Second milestone:
She is sitting up on her own, for short periods of time, but she can do it. It is so cute to see her focus as she tries not to fall backwards.

The Last milestone she has come across really breaks my heart. It has made me cry because I was not ready for this one. My baby girl weaned her self from nursing. She no longer wants to nurse anymore as she screams and throws a fit everytime I tried to latch her. I really really wanted to nurse her until she was closer to a year old, but at least I hit my short term goal which was 6 months. I'm sure those of you who have nursed know how difficult this is. It is something I wasn't prepared for and still not. Fortunately, I still have some milk stored up that I will be using the week she is home from surgery. I feel she needs the best at that point and I'm happy that I have some stored up for that.

This week is Hannah's 6 month check up with a new doctor. Hopefully all will go well and she likes her new doctor. Until then. . .

How it all started . . .

Hannah Christine, born March 5, 2009 at 10:39 a.m., 4 weeks premature although as healthy as a full term baby (Praise the Lord). Bless her heart, she was bruised and swollen from head to toe due to her rapid journey into her new world (I think I almost missed the delivery, hehe). I was in such awe of how beautiful she was, as any mother would be of their freshly born baby. After months and months of anticipation of what she will look like and smell like and feel like, it was finally here, finally the moment I waited for. Naturally, I studied her, studied every nook, cranny, and roll of her body. I noticed that her forehead was odd, but assumed that was how GOD made her.

A few months had passed and it was getting more prominent. At her 4 month check-up I pointed it out to her doctor, hoping that it was nothing and actually expected that response, nothing. To my shock, what I had noticed was something very valid, something, at the time, I didn't understand. Our doctor didn't feel as if it was something too concerning but she sent us to have a CT scan of her head just to be sure and make sure everything was growing properly.

I still didn't understand what we were checking for at this CT scan so I google "abnormal head shape" and to my horrific surprise, find the results. Something that is called Metopic Crainiosynostosis also known as Metopic Synostosis.

What is Metopic Synostosis?
The metopic suture runs down the midline of the forehead. Premature fusion of this suture results in a triangular shaped forehead called trigonocephaly. A bony ridge is usually palpable that extends from the bridge of the nose to the upper part of the forehead. This premature fusion produces a prominent midline keel with lateral recession of the brows. From the frontal view these patients typically have the appearance of hypotelorism or decreased distance between the eyes.

In my mind I didn't need the CT scan to confirm my theory, I knew after researching that it was what it was. I knew that without a shadow of doubt my baby girl had this condition. In order for Hannah to have a CT scan, she must be absolutely still; therefore, they gave her a sedative to sleep. The testing was easier than I or my husband expected, although it confirmed that Hannah's sutures were indeed closing/closed.

We met with the neurosurgeon and set the surgery date for November 3, 2009. She will be in surgery for 5-6 hours and will need a blood transfusion. Unfortunately, we do not know what blood type Hannah is and won't find out until the day before her surgery, if not the day of. Brandon and I will be giving blood in October designating it specifically to Hannah. If we are not the exact match, they will pull from their bank. We pray one of us is the exact match.

I will be posting new updates of her surgery and her milestones as time goes on to keep all of our friends and family in the scoop. So until then ...