Saturday, September 29, 2012

Giving Back

After our very successful March for Babies 2012 (thank you to each of you that donated!) we realized that giving back was an important way for us to heal. We also hope to raise Virginia to understand her special beginning in a way that she can also learn how to help others.

For her first birthday her "big gift" will be the 45 books that we will be donating and delivering to the NBSCU. These books will be for families that are bonding with their babies through portholes in an incubator and around the tubes, IVs, equipment and noise of the hospital.  Reading books to Virginia was one of the only "normal" things we could do for a long time.  We read Snuggle Puppy and My Very Own Name to Virginia countless times.  We also read the newspaper, Heath's MBA homework, work emails, blog posts and just about anything else to her too.  The important thing was that she heard our voices. We received many books from the book cart in the NBSCU and it seems fitting to fill the cart back up.  

If you would like to add to the book delivery please let me know.  I put some books on an amazon wishlist as well http://www.amazon.com/gp/wishlist/3GVR2WCUALTXH/ref=reg_hu-rd_add_wl


Thursday, September 27, 2012

The Storm

As we reflect back on the past year I realize that there are so many blessings out of our story beyond the obvious blessings of good health and our beautiful little girl.  We have met some absolutely incredible people.  We now have numerous nurses, physician assistants, and other preemie parents that we consider friends.  These are people that would have never been in our lives had Virginia not been born so early.  One friend sent me the quote below last week.  Her son was in the same "spot" in nursery 3 at the NBSCU about a year and a half before Virginia.  She has been an amazing friend and support to me and always has the best advice at the times that I need it most.


The storm isn't over, but in the past year we have learned to dance in the rain and appreciate the rainbows that peak behind the clouds as one storm passes.  



Virginia just gets more and more fun.  I feel like I am constantly thinking that we are in my favorite "stage" and then a month later I am realizing how we are having even more fun.  


Monday, September 24, 2012

Virginia's month long birth story

Its been a year since our parenting journey started on this wild ride.  I would be lying if I didn't say that it all feels pretty raw these days.  The crisp mornings and early sunsets that make September different from August are such instinctual reminders of this time last year.  This will be long, but Im going to tell Virginia's month long birth story from beginning to end.  This blog has chronicled our incredible journey from October 22, 2011 to now, but for so many reasons I want to be sure I write out how the story started.  It was in that month before her birth that I realized how precious life is, how important faith is, what a truly amazing husband I have, and what an incredible support system of friends and family we have.

Until 20 weeks I had a perfectly normal pregnancy.  I had been working out 5-6 days a week, eating (mostly) healthy, and had perfect checkups and ultrasounds.  Around 20 weeks I started to notice my tummy occasionally getting hard while I was working out or sitting for a long period of time.  Initially I thought it was the baby rolling, but then realized that it was likely braxton hicks contractions.  Dr. Google told me that it was normal to have them that early but it still made me nervous.  I had previously had a uterine surgery that I knew put me a slightly higher risk for pre-term labor and cervical issues.  Because of my history I had made a plan with my OB at the first appointment to have monthly ultrasounds to monitor for any cervical changes.  Once I started noticing sporadic braxton hicks contractions I called my OB and asked that we move up my scheduled ultrasound from 23 weeks to 21 weeks.  He agreed and also eased my concerns stating that serious complications would be rare even with my history, but it was worth being cautious.

I was convinced that everything was fine, but was glad that I would have piece of mind after the ultrasound.  Unfortunately I knew something was definitely wrong as soon as I saw the ultrasound image on the screen mounted to the wall in front of me... the baby's tiny feet were slipped down into what looked like a funnel.  This is definitely not what my weekly "your baby is this big" email from babycenter.com looked like.   In an instant my heart sank, my hands shook, and my mind went blank.  Again, my doctor put me at ease.  He explained that while my cervix was effacing much earlier than normal it did not mean that I couldn't continue to have a healthy pregnancy, albeit one spent on bedrest.  I felt better, composed myself and left the office determined to do everything I could do to keep the baby cooking.  We canceled all of our plans for traveling to our niece's baptism and babymoon in Montauk and set up a new routine at home.  I was ready to spend the next 4ish months alternating between my bed and the couch.  My first week of bedrest went really well.  I hardly had any braxton hicks contractions, I was able to get quite a bit of work done from home, my spirits were high, and we already had so much support.  It was a week later and a week closer to a healthy baby.

Again, I walked into my OB's office pretty confident that things would be ok.  I thought for sure that the measurements would either be the same or maybe even better. Afterall I had gone from being very active (including long runs and workouts) to laying around and doing nothing for a week.   This time I had no idea what I was looking at when the image came up on the screen.  I didn't need to though, the look on the ultrasound technician's face was an unmistakable look of sympathy.  There was basically nothing left to measure and they sent me right over to the hospital for observation, testing and a possible cerclage the next morning.

The two days that followed were the hardest of our lives.  We had consultations with many doctors.  We were hopeful that a cerclage to stitch my cervix shut could be done, but didn't meet a single doctor willing to recommend the procedure because of the risk of sending me into immediate labor.  Even the doctors that suggested that our baby had very little chance of making it to viability were unwilling to perform a cerclage.  It was unbelievably confusing, scary and heartbreaking.  Over those 2 days, Heath and I talked about things that no expectant parents should have to discuss.   Would we name the baby?  Would we baptize the baby?  Would we want to be alone?  It was a relief to discuss and decide on the unimaginable and move on so we wouldn't have to make these decisions at even more emotional and stressful moments.  From then on we only accepted hope and despite all the grim statistics we decided to believe that we would be okay.

We counted days, days that felt like years.  Somehow days turned into a week and then another week and suddenly we had reached viability. I received steroids to help the baby's lungs mature and was moved to the antepartum maternity floor where they were well equipped to monitor my condition. We went from desperation veiled as hope to so much hope.  My first ultrasound in 2 weeks revealed that everything was the same.  It seemed like I had stabilized!  My doctors were equally surprised and confident that it meant that I could remain pregnant for much longer than anyone expected.  I was even given a discharge date of December 10th (32 weeks).

Again we were confident.  No contractions, the baby was growing well,  I felt good, I had a steady stream of visitors, and we were prepared to spend the next 8 weeks in the hospital.  Just a few days later, late in the night on a Tuesday things deteriorated.  I will never forget the fear as I waited for the chief resident to come to my room.  I shook like a leaf; fear and disbelief once again took over.  In a matter of minutes they were inserting IVs into my arm and wheeling me to the labor and delivery floor.  I called Heath and then called the Fairfield police to get Heath.. that's a story that has been covered in a different post.   During the wee hours of the night, while in the haze and overwhelming heat of magnesium, there were ultrasounds showing that  the baby was in the least favorable position of feet down, we met with anesthesiologists, met with my on call OB, met with the on call MFM and most sobering of all we  met with the neonatoligist.  We were once again given the statistics; survival statistics and disability statistics for a baby born at 24.5 weeks. She also attempted to prepare us for what we would see and how they would attempt to help our baby.  Hours turned into shifts and then days and somehow things stabilized again.  I desperately wanted to get back to my room on the antepartum floor and desperately wanted to be able eat again (I was NPO for several days while on magnesium).  I felt like a ticking time bomb on the labor and delivery floor (I was) and wanted to go back to "my" room where I hoped to turn days into weeks again.

After 3.5 days in a labor and delivery room on strict bedrest (otherwise known as the the 7th level of bedrest hell where bedpans and sponge baths are very much a reality) my doctor agreed to let me go back to "my" room on strict bedrest.  I told him I was ready to last another few weeks and for the first time he didn't share the same optimism.  He gave it to us real.  It was Friday afternoon.  He was on call all weekend and said he wouldn't be going home all weekend. He didn't think I would still be pregnant when he signed off to the next OB on Sunday night and wanted to be sure he was "in house" for what would likely be an emergency situation.  He had us prepared for a crash c-section and a very frantic but well rehearsed series of events.

By dinnertime on Friday the 21st I was back in "my" room and more importantly back in "my" bed which was far more comfortable than the beds on labor and delivery which were very clearly made for birthing babies and not for sleeping.  In hindsight I was very much preparing for Virginia's immanent birth while putting on a face of strength and hope.  We narrowed down names to 2 boys names and 2 girls names, something that we hadn't discussed since the series of unfathomable conversations that Heath and I had during those first 2 days in the hospital.  By the next morning I knew I was going to give birth that day.  I tried to convince myself otherwise, but even my favorite Resident's prediction that I would prove my OB wrong and make it to Thanksgiving was not enough to distract me from what I already knew.   I called my nurse a few times and she said they weren't picking up any contractions on the monitor belts that had been strapped to my belly for the last few weeks.  I called her again and asked her to page my doctor.  I was right.  I was almost 7cm dilated.  I thankfully skipped my breakfast knowing that I would need a c-section and was soon back down in the same Labor and Delivery room.

If you have to give birth to a baby 15 weeks early, you want it to be under the most controlled and ideal circumstances.  Somehow I had avoided infection and somehow my water had not broken.  We were down in Labor and Delivery under fairly calm conditions.  There was definite tension in the air as micropreemie births are not an every day occurrence even in the best of hospitals. The calm erupted into controlled chaos when they thought the baby was going into distress.  Suddenly seconds felt like hours until I was in the OR and they confirmed that the baby was fine. Things calmed down and instead of being put under general anesthesia I held my OB's hand as they tried and tried and tried and finally succeeded at giving me a spinal.  It was all so surreal- it still is.  My most distinct memory of that day is laying flat on the cold operating table and looking down at my bare belly before they put up the blue screen.  I could see the tips of my toes, the little pregnant belly I had in the days prior was mostly gone because the baby was so far down in my pelvis.  It was so unsettling, so surreal.  Heath joined me in the OR as they started the operation.  He sat on the left side of my head and held my hand.  Within minutes the baby was out.  11:11am.  Absent was a cry that we wouldn't hear for another 8 weeks.  10 or 15 minutes later they announced it was a girl and let us know that she was successfully intubated.

The rest was hazy and none of it mattered.  It was a new fight, a fight that I unfortunately could no longer fight for Virginia.  We could only hope, pray and BELIEVE that she would fight.  This is the end of this story and the beginning of the most amazing story I have ever known.

Saturday, September 22, 2012

11 Months Old!




Virginia is 11 Months old today!

At 11 months:
She weighs 17lbs!
She is sitting up very well
She rolls around to get to what she wants
She loves feeding herself toast, cheese, pieces of fruit and anything else that we are eating.
She babbles and "talks" to us :)
She loves playing with our Nanny's daughter Lilah

To celebrate 11 months we went apple picking this morning.  Despite the lack of a morning nap, Virginia loved riding the tractor, watching as we picked apples, and sucking on the apples fresh from the tree.  















On Friday Virginia had a follow up appointment cardiology appointment at YNHH.  It was a long afternoon that included a echocardiogram, an EKG, and a visit with the Cardiologist.  We are so relieved and happy to report that her coronary fistula and pulmonary hypertension have both resolved on their own.  We couldn't have asked for better news.  We know that we are so blessed and we thank each of you that continue to pray and think good thoughts for Virginia.  We also got to visit with a few of our favorite NICU nurses and doctors after the appointments. We are grateful everyday for their skill and care.



Heath and I spent alot of time eating breakfast, lunch or dinner around this fountain at the atrium of YNHH.  I thought for sure that Virginia would be fascinated to sit by it but she was clearly more interested in her toes.  


After her appointment we celebrated by meeting some friends at a local winery for happy hour. Ginny had a great time playing with her friend Sadie.  She also was watching intently as Sadie crawled around.  She must have been taking notes!

Wednesday, September 19, 2012

Ginny and Pippi

Virginia and Pippi are both great travelers and have put up with many hours in the car traveling the east coast.  For this past trip we decided to put Virginia to "bed" and travel down while she was sleeping.  This is how they spent the first half  hour of the trip though.  I have a feeling that these two are going to be best buds in the coming years.  

video

Tuesday, September 18, 2012

look alikes

In case you had any doubt about who Virginia looks like ... 

 I present evidence number 1 


and evidence number 2


Sure she has my coloring and maybe mouth, but this girl can't deny the Kent/Fairley genes!

Monday, September 17, 2012

Celebrate!

We had a busy, but great trip to Maryland this weekend.  The weather was amazing, so we enjoyed spending time on my parents deck visiting with our friends and family.  

Every trip to Maryland from June to early November involves a crab feast, unfortunately our hands must have been too messy to take any photos.  We had a great time hanging out and eating crabs with my parents, my sister and her family, and our friends Joanna and Rusty.  There is nothing like a crisp late summer evening spent with fun people around a brown paper clad table with a mountain of chesapeake bay crabs, a few dishes of melted butter, and some old bay dipping piles.  Its an event not a meal... something for Virginia to look forward to in the coming years.  

There is also nothing like Sunday brunch and redskins football with family, especially when celebrating a new engagement!  My cousin Nina (and one of Ginny's biggest supporters) got engaged Saturday night to Jay, who has been a Klem family favorite for a long time.   We were so so happy to be there to celebrate with them.

Congrats to Nina & Jay!  

Virginia meeting Nina for the first time!

Ginny, Nina & Karly

Virginia loves Uncle Shawn

Teresa, Karen and Virginia

The MKlem and BKlem girls

Virginia's first time meeting Kara.  Virginia loves nurses and instantly loved Kara, who is in her final year of nursing school and is going to be one amazing nurse.  

Virginia with Uncle Jim

Clare helping Virginia open her first birthday gift (a few weeks early!)

Moma and her girls at halftime

Moma, McKenna & Ginny

Friday, September 14, 2012

Flashback Friday - Feeding

As I gave Virginia a bottle today, I couldn't help but be amazed and reminded of how far she has come.  We cuddled together as she drank her bottle and before I knew it she had finished all 7 ounces.

All of January and most of February of this year was spent laboring over Virginia's feeding.  Our baby was no longer in critical condition but we had been in the NICU long enough to know that feeding was a big hurdle and had long term implications.  We no longer had the healthy naivety that helped us emotionally get through the first part of our journey.  By January we were well read and fully immersed in the possible realities as parents of a micro preemie.  In short we were scared out of our minds.

Virginia's feeding struggles brought to light the many unknowns that we would be faced with and was a good lesson in patience.  For me the anguish over her feeding troubles weren't about feeding, it was the anguish about the unknowns in our new reality.  The unnatural things like the ventilator, the pumps lined up of IV medications, the PICC lines, and the mountains of xray and ultrasound reports were all mostly behind us, but the reality of how unnatural the should be natural things was staring us directly in the face.

We did and continue to do the only thing we know how - put one foot in front of the other and enjoy each day with our beautiful blessing.

the first full bottle that Virginia ever took for me.  

Virginia had to be fed sitting up and we had to carefully help her pace herself.  

Wednesday, September 12, 2012

FUN

We are having a lot of fun these days.  Hope you get a smile out of these photos and videos :)

Virginia loves sitting on the porch bench

She likes rocking in the rocker in the mornings.
 

She loves with the "baby" on the iphone camera ;)
video

And she thinks Pippi is hilarious
video

Sunday, September 9, 2012

savoring summer



We are savoring every last bit of summer.  This weekend included time at the beach, walks outside, watching thunderstorms, a blessing at church, and a special Auntie's birthday party.

RSV and cold/flu season are looming around the corner and we are trying to make the most of our last few weeks before we do a bit of winter hibernating.  We haven't found out if Virginia will be receiving synagis and we haven't discussed the specific do's and don'ts from our pediatrician yet, but we are planning on being very cautious and see how things go.

The Plan: We wont be doing much traveling this winter, we won't be going to the mall or grocery store with Virginia,  we won't be going to church as a family, and we either will graciously decline or be very careful at any gatherings with groups of friends or family.  We do still want to see our friends and family, but we will just have to be extra careful.  This is where we need your help.

-Please wash your hands or use hand sanitizer when you come in our house or before touching Virginia.

-Please get a flu shot and pertussis vaccine.  I used to be a flu shot skeptic until I realized that I shouldn't do it for me, I should do it for the many people that are more susceptible to complications from the flu and whooping cough (preemies, babies, elderly,and those going through immuno suppressant treatments).

- If we are planning to see you, please let us know if you or anyone in your house is sick, you think may be getting sick, or have been sick within the last few days. And yes, the sniffles and tickle in your throat count!



Thursday, September 6, 2012

Therapy





Therapy - Unfortunately not the retail kind!  Virginia has now completed 6 months of therapy in the birth to three program and she has truly made some amazing progress in these 6 months.  At her initial evaluation, which was just a few weeks after she was discharged from YNHH,  she was barely able to lift her head off the floor while on her belly, could not reach for objects, and had very little head control.  After that appointment her therapist wrote formal goals for her development for the 6 months following the evaluation.  Virginia has reached every single one of those goals which include full head control, rolling, doing baby push ups on her belly, sitting up independently, eating solid foods, and  grasping and controlling objects with both hands and between hands.  Her newest tricks that surpass these goals include babbling, repeating some simple gestures, feeding herself puffs and toast, and rotating while on her belly.  We are so very happy with her progress and hope that it continues.

Her therapists have decided to increase the frequency of her physical therapy and also add occupational therapy, not because she is lagging behind on her goals but because it is clear that she is thriving with the help of the therapy sessions and she has been responding especially well lately.

Im certain that if her Physical Therapist and Occupational Therapist from the NICU saw her now that they would be truly amazed.  Virginia's therapy file from the hospital was full of observations like severe feeding troubles, sensory issues, low tone, torticollis, trouble finding midline, disorganized motor control, and notably quiet.  Virginia, you have come a long way baby.






Tuesday, September 4, 2012

leaving on a jet plane....

Virginia must be studying the maps and globes in her room and be dreaming about traveling to far off places.  She went on her first plane rides this past weekend and was such an excellent traveler.  She has always been good in the car so I felt pretty confident that she would do well on the plane but traveling alone with a baby always presents challenges that you don't think of ahead of time.  Luckily my mini travel partner won over many fellow travelers with her smiles and giggles and we were blessed to have some very helpful strangers assist us.  



Once we were settled in Maryland she spent alot of time playing with and loving her cousins.  They are so sweet with her.  Virginia also got to visit with lots of other family and friends and greeted everyone with a smile.  



We also spent alot of time at the pool!  Virginia especially liked swimming in the big pool and watching all the other kids in the baby pool.  


She also tried out a jumparoo for the first time.  Id say she liked it!