Tuesday, April 9, 2013

Your First Birthday

My sweet Ella.

You are ONE year old today!

I have so many mixed feelings about this milestone of yours, but the overwhelming feelings are love, pride and gratitude.  Because you had to come earlier than anyone expected, it was actually a very scary time when you were born, and for the months thereafter.  BUT, this day is not about mommy or that fear, it is about celebrating YOU!

Mommy wished for you for a long time.  I felt like I knew you, long before you ever got here.  I kept trying to bring you to me because I already knew what an amazing little girl you would be.  And I was right!

You were born in Asheville, NC at 12:12am, just minutes after Easter Sunday after spending only 25 weeks and 2 days in my tummy.  Mommy vaguely remembers hearing you actually cry before the good doctors and nurses took you away to take really good care of you (your wubba-nub "Furry-Guy" is named for the neonatologist who was at your birth, Dr. Furiguy). Dr. Furiguy is actually the one who first called you a "Rock Star", and that nickname stuck. Grandma Carol went with you and Dr. F since Mommy had to stay back with her own doctors and couldn't be with you yet.

We spent your first 9 weeks of life in Asheville with Nurses Deb, Terri, Roxie and Donna taking such good care of you. Your Aunt Rusti flew up to Asheville on the day you were born to help take care of you and Mommy. Since Mommy was sick, I didn't get to see you until you were 1 whole day old. I asked the doctor what I had to do so I could see you and they said I had to be able to get up and walk across the room, so I did (and scared everyone in the room when I did it).  And I got to see my Ella for the very first time.

You were so very tiny at 1lb 2oz and 11.4" long.  The ultrasound photos from just the week before sure made you look like you had more baby fat on you than you actually did.  You were skin and bones at the time.  Your eyes were still fused shut.  You only needed to be on the ventelator for 1 day before they took that out and put you on the CPAP (the big contraption that made it hard to see your whole, beautiful face).

The next day, Aunt Lynde and Donna came to visit.  We all went to see you again.  That time, Nurse Deb took you out of your incubator so mommy could hold you for the first time!  You were so tiny I was afraid I would break you.  I didn't understand at that time how very strong you really are.

Mommy was with you at the hospital every day!

When you turned 1 month old you got very sick and had to have your first surgery.  This was a very scary time that I will write about some other time.  Let's just say that this is the time that you convinced me exactly what a fighter you are.  And for the rest of your life I will know that you can do ANYTHING you set your mind to and fight for!!!  

At 9 weeks old, in June, you were breathing all by yourself!  The next day you took your first car ride (ambulance) and came home to Charlotte.  You moved to the hospital just around the corner from our house and Nurse Tammy and Pam took good care of you, among many others like Kristina too.

You had your second tummy surgery on July 2, another scary time for Mommy.  July 21 is the day you were originally supposed to be born but you were already 103 days old by then! 

You had your 3rd surgery, your eye surgery, in August.  By then you were a pro and got through that surgery quickly, recovering easily although the follow up exams were frequent for many months thereafter. Of course, before that surgery mommy made VERY sure all of the doctors were very aware of everything they needed to know about you and your previous surgeries so they would know how to take extra special care of you.

Finally, on September 19th, at 164 days old (5 1/2 months), you came home with mommy!  You got to see your house, your pretty bedroom, you met your doggies, Izzy & Faithy.  Grandma came and stayed with us to help us out for a long time.

You immediately started Physical Therapy (PT) and Occupational Therapy (OT) every week.  The first few months at home were very busy for you with lots of doctor and therapy appointments.  Mommy felt much more like she was your nurse than your mommy sometimes.  You loved to be held and made it known that we shouldn't put you down.

In December you had to go back to the hospital because of an infection and we stayed there for two weeks!  Your first Christmas was in the hospital.  But, you also were able to have the central line removed from your chest (you had that since your first surgery in May).  You were much happier after they took that out!  We came home on New Years Eve Day and everything has been different since then.

Grandma went back home.  Natalie, your Au Pair, came to live with us and take care of you while mommy works.  While you have lots of therapy appointments each week, your doctor appointments are much less frequent.  Mommy doesn't have to spend much time being your nurse any more.  You began to show some signs of independence, able to hang out on your own a little bit.  You don't cry very often at all anymore (you were pretty fussy before then, obviously you were uncomfortable with the line/TPN).  Your attention/focus improved dramatically.  

You amaze me every day!  Besides being beautiful (oh my, do you have the longest, curliest, darkest eye lashes I've ever seen!), you are the strongest person I know.  You have faced far too many challenges than anyone should, just in this year and you have come out thriving!  

You are nearly sitting on your own, any day now.  Those surgeries on your tummy have made it harder on you than it is on others to strengthen your core.  You work so hard to strengthen your core every day with all of your physical therapy and 'homework'.  You actually like to do your ab-work, you make it a game.  You enjoy the praise for sitting up so much that you throw yourself back so you can pull back up again, and again, and again.  

You also commando crawl (crawl on your belly).  You are very good at it and can go quite a distance but you are not happy about it, it is hard work.  You are making so much progress getting up on your hands and knees, gaining a lot of strength in that position.  You have been standing/bearing weight on your legs for a LONG time.  I know that once you get sitting and crawling down, you will take off!

For a very long time you didn't like books.  You would cry when Grandma or I tried to read you a book.  Sometime over the last several months that changed and you love to be read to now.  When I read you a book, you lean forward to intently look at the pictures and then throw yourself back against me.  You do this over and over again, rocking & jiggling as you sit on my knee.  

You are doing a good job eating by mouth.  You actually decided to finish your entire bottle for us this morning, on your birthday!  You are doing a good job eating oatmeal occasionally, also eating the special pudding-like formula that Dr. R gave us for your "birthday cake" and starting to work on sipping from a sippy cup.  We still have to use your g-tube but mommy got Dr. R to reduce your calories back to 20, since you have been doing such a great job gaining weight and we have been able to stay at 130ml (just over 4oz) per bottle for over a month now.  The doctor just wants to make sure you are getting your nutrients and stay hydrated, which you are.

You are now 19lb 10.5oz and 26 3/4 inches long!

The pediatrician and pulmonologist have different advise on when to end your RSV isolation.  The pediatrician said we could start getting out in early April, with precautions.  The pulmonologist told us to keep doing what we are doing until the end of May!  Both of these very smart doctors told us to stay away from crowds, groups of children and that mommy has to be in control of who touches you - since the bad viruses are transferred by touch.  

For now, Mommy is planning to stick with the gradual exit from isolation schedule that she has had in her head for a while, which started with your birthday party on Sunday.  We invited Jeff, Jeanie, Lynde and Donna to come over to celebrate along with Grandma, Grandpa and Natalie.  You had a good time, it was very differerent for you to have so many people at the house.  It was such a pretty day, mommy had cleaned the patio and furniture so we could sit outside.  

You don't want anyone except for mommy or Natalie to hold you.  Even Grandama!  And it turns out you are finally teething... one day soon we should see your first tooth!

You know what you like and what you don't like and you let us know.  Yes, you got that from me.

This has been the longest year, yet shortest year.  It has been the hardest, most terrifying year.  It has been the happiest, most joyous year.  I don't know what I believe anymore but I know I truly and completely believe in YOU!



Rock Star Birthday Cake

Blowing out the candle

Mommy and E

Birthday Flag

Rock Star Decorations

My new big girl chair
Swinging with Mommy

Sunday, April 7, 2013

A Year Ago...

I'm using this phrase a lot lately.

A year ago tonight I was up all night, trying to sleep in the recliner in my parents basement in the mountains, so miserable. Crying.

The next morning was Easter and I decided I should go to the hospital because I couldn't take the pain/misery any more. I thought I wasn't tough enough... It was just pregnancy, right? It didn't take too long for me to realize I was pretty darn tough to have been functioning at all and I have a very high tolerance for pain.

One of these days I need to let myself go deep into that day, and write about it too. I'm sure that will be healing. I write this little about it with tears rolling down my face knowing tomorrow will be a difficult day for me. I should have taken Monday off work as well as Tuesday...

On another note, we had Ella's birthday party today and it was really nice. Hopefully I will find time to share about it, and pictures, by Tuesday.