Our Preemie story/Happy 2nd birthday Baby J.

Sorry Blogger no longer lets me add pictures.  :-(

Just a little over two years ago, an event that changed my life occurred (though I didn't know it for another week).   A tiny 27 week gestation baby was born at 1 lb 14.7 oz in the middle of the night, flown to a bigger hospital, and saved by an awesome staff.  A week later I met my daughter, the best thing ever.
I've spent a lot of the last week looking at my blog, our baby book, and thinking about our preemie experience.   I am on a lot of Facebook pages for micro preemies and it amazes me how different each story is and how very very blessed I am.   It's actually quite amazing that my daughter has survived to toddler hood and I know most preemie parents and probably doctors would be appalled at our life.  Our story is very much different than most others.
I heard about Baby J several days before they knew for sure she would be up for adoption- an email requesting prayers had been sent out.  I knew I was at the top of the list and would be asked if I was interested.  I spent a lot of time researching that week and figuring out what I would say if they asked.   I never wanted to put a sick child purposely in my care if we knew ahead of time since I'm single and I have a crazy schedule.   But everything felt right about saying yes to this baby girl and a few days later I was told we were matched.  As Baby J turned 9 days old I met her.   She was extremely sick and suffered from pulmonary bleeds, brain bleeds, collapsed lungs, PDA, sugar imbalances and many other things.   But the moment I walked in and saw this moving tiny baby and touched her tiny little hand, we knew we were meant to be together.   She had been alone for a week, but you could tell she knew I was there for her.  While improvement took a really long time, she never got worse from that moment on.
I was lucky because I wasn't the new mother who had suddenly gave birth to an unexpected preemie or suffered from exhaustion from the birth.   I was on summer break and knew what I was getting into.  I think that made a huge difference in the entire experience.   At one point I truly though I was there to help her move on, but because I wasn't the tired, exhausted new parent, I was able to handle that. (so glad that didn't happen).   I researched constantly and read a textbook the nurses gave me, so not much surprised me as we progressed, except how much of a fighter baby J was.   I was so blessed to be able to spend almost every day with her and towards the end, my aunt and mother stepped in when I couldn't be there so that Baby J wasn't alone.   I think this made such a huge difference in her health.
It's interesting to read about how different all the NICU's are around the world on Facebook.   We were at one of the best.   They had no cases of NEC so I didn't have to worry about that which was good, and while sometimes I was frustrated at the lack of things I could do or decisions that were made, they were always in the best interest of my child and had excellent reasoning behind them.   Baby J received the best care a baby could get at that hospital and because she started as one of the sickest babies, we never were moved out of her private room.   I was very happy about that.  And because we were there for awhile (79 days) and because she was alone the first week, she was loved by all the staff.  Baby J developed a strong personality almost right away and the nurses loved to interact with her.  While at the hospital Baby J suffered from PDA, pulmonary bleeds, grade 3 bilateral brain bleed as well as a grade 1 and 2, blood sugar issues, blood gas issues, collapsed lung, breathing issues, ROP stage 2, and lots of blood transfusions.  But when she came home, all of these were gone except the ROP which she was cleared from the following week.  She truly is a miracle baby  PS as a side note for all NICU parents- take lots of pictures, especially with something that shows size- because as they grow it's hard to believe they were ever that small.  I should also mention that the Ronald McDonald house was amazing- I stayed there for almost two months and they allowed my aunt and mother to use my room when I wasn't there.
I was so happy to bring her home and that's where our story really differs from most stories.   In fact the day she came home, I went to work, held auditions and then drove the 2.5 hrs to get her and brought her home late at night.   I went to work the next day because it was a new job- I'm so lucky my Mom could watch her the first year at home, but that's where our precautions stopped.   As a single mom who works 40 hours a week and then has evening commitments with my job almost every night, it wasn't possible for us to stay isolated.   Within the first week of being home, baby J had been to a family anniversary party and a baby shower for her and started attending rehearsals with me. By the time we had been home for the first couple of months, she had been out nearly every day, out of state twice, and exposed to the world.  She even saw her first shakespeare show (Hamlet) within the first month.   So yes it's amazing we survived.  I'm such a bad preemie mom.
While I did my best to shield her from illness as much as I could as  a single mom, Baby J did suffer lots of colds the first year and some bronchiolitis, but we never went back into the hospital and really while it sucked to have a sick baby- she was never extremely sick.
At first I felt like developmentally she wasn't progressing well- It is SO HARD to remember adjusted age when looking at development.  But in all honesty Baby J hit all milestones at the adjusted age- 3 months is just a big difference to wait for.  There were many things that seemed out of order or that she didn't seem to do that she should have, but by 9 months actual she was crawling and by 13 months actual she was walking well.  And at 15 months actual she was actually a little ahead developmentally and using a lot of words so she was deemed caught up and released from early childhood.
This year she's attended a real daycare and been diagnosed with Reactive air disorder- but again she hasn't been back to the hospital and the last few months she has actually been pretty well.  She also has some allergies, but overall is a pretty darn healthy little girl.
As she is entering age 2, she is the best part of my day and the happiest.   She now talks in sentences and talks ALL the time.  She is a fish in the water and is so close to swimming on her own.  She loves to sing songs and can do several toddler songs with actions.  Baby J is an animal lover and we spend lots of time at the zoo and she loves to hug and love on our two dogs.  She still climbs everything and freaks most people out- I've stopped even trying to make her stop.  We read and look at books constantly - in fact she has to have two to sleep with.  She knows some of her shapes, can identify most animals and honestly most objects.  She is still very attached to me and spends most of her time playing in my lap.   We are still working on her independence in public (as she tends to clam up and cling out and about)   Baby J can throw a tantrum like none other, but honestly unless she is tired she is happy and giggly most of the time.  I love watching her grow and learn each day- she is a sponge and learns so quickly.    She is such a hilarious little girl.
Today we went to her doctor and we are going to get reconnected to Early childhood- just to have her legs/feet evaluated.  She turns them in a lot and tends to trip over them, especially when running or moving fast.   She got some allergy medicine prescribed so helpfully she can breath better.   The doctor was very impressed with her and was very happy about how much she has grown.   Baby J's percentages are now compared to her actual age and she really falls on the charts quite well. Height 33.5 inches (39%)- up from 14.5 inches at birth.   Weight 24 lbs 4 oz (20%) up from 1 lb 14.7 oz at birth and her lowest weight of 1 lb 10oz.  Next week we go to our last NICU follow up.
We still don't know what the future holds as far as how her birth and first few months will affect her, but I truly believe she will excel and continue to do well.  We have been so blessed by so many people who have prayed for us and supported us.  I truly love my daughter and am so lucky to have her in my life.   If you are just starting your NICU journey- know that there is hope, even with health problems, amazing things are happening every day and many factors affect how your child will turn out.  This baby who couldn't breath, hold her own tempature and suffered brain and pulmonary bleeds is today a happy healthy 2 year old whom you would never guess was a preemie (in fact people are always so surprised to learn that).
Thank you to all who still pray and follow our journey.  I am so lucky and blessed.