scale

I have always had a hard time depicting just how small Virginia was, but lately I have had a hard time remembering it myself.  "Impossibly small" is what comes to mind.   Much of this post is just a reminder for me.  A reminder of how far she has come.  A reminder that so much is possible.  A reminder that every ounce of heartbreak and worry is rewarded ten fold in our joyful little girl.  

I didn't have the foresight to put anything next to her for scale in those early days.  I remember being utterly shocked by her size but even more amazed that she was so tiny, but so perfect.  Every detail was there - just so tiny.  

 Her blood pressure cuff was smaller than a standard size bandaid.

 My wedding ring fit over her ankle.

The first time I held Virginia her head nestled between my breasts and he feet touched just above my belly button.

Her diaper was smaller than a playing card.

That lamb is a beanie baby (!)

At 2 months old she fit in her tiny stocking.

At 2 months old they swaddled our "warm baby" in a pillow case folded in half

10 weeks old being held "like a baby" for the first time.

 feeling "huge" to us at 11 weeks.

scenes around toddler town

We have been busy playing hard, laughing harder, and smiling bigger. 

 Just soaking up all that summer and toddlerdom has to offer!  

love

Intuition is power

With all of the talk about viability and  end of life decisions, I can't help but continue to return to intuition.  As I have said before, we had a long time to prepare for Virginia's early birth.  We had the time to research and the time to ask the "right" questions.  We had the time to pour through the statistics.  We received some really harsh and unsympathetic counseling and some really caring and factual counseling as well.  In the end every decision was our decision and our hearts and our intuition played a key role in making those informed decisions.

At the risk of sounding more than a little hokey, there was a lot of intuition and luck that saved our child.  It is something that is often undervalued in the obstetrics and neonatal world.  It is something that many first time mothers and first time parents brush to the side because they don't want to seem foolish.  I believe in all things good medicine - preventative care, the best specialists, vaccinations & medications, but I also believe in trusting my gut, knowing my body, and acknowledging that "feeling."

My intuition is what alerted my doctors that my pregnancy and my baby were in great danger.  There was no bleeding, no discharge, and no time-able contractions, but there were a few braxton hicks contractions and a feeling that something may not be right.  Sure, I could have walked away from the ultrasound feeling foolish and like an alarmist but instead we realized that I was silently and painlessly dilating at 21 weeks.

Counseling, research and intuition is what we relied upon when talking about resuscitation.  At 22 weeks the neonatologists asked us to choose the gestation for resuscitation.  That statement grossly oversimplifies the conversations which included options for comfort care, survival and disability statistics,  and delivery & resuscitation scenarios.   We chose a date based on that information and our own intuition.  I knew my due date was off by as many as 4 days in the bad direction.  I knew we had to take this into consideration.  We would later find out that at 650 grams, Virginia was most likely born at 24weeks 3days or so rather than the 25weeks 0days on her official stats.  In the micropreemie world hours can make a difference.  A half of a week is like changing the book.

5 days prior to delivery (at 24 weeks 2 days officially and 23 weeks 5 days in my head) I was transferred to labor and delivery because delivery seemed immanent.  At that time we consented to the c-section and asked for resuscitation using all medical options.  We did not even entertain the idea of letting her "declare" herself in the delivery room.  That decision was not made just with intuition alone but with knowledge of the potential outcomes, the confidence in our doctors, and the faith that we were making the right decision.   Upon delivery she was blue, she did not cry, and she had no drive to breathe, but she was kicking.   Her neonatologist that day gave us the statistics for her survival if she made it through the first 24 hours and then again if she made it through the first 72 hours.  After day three he was quite frank with me.  He said bluntly "I was not very impressed with your daughter at delivery, but she has been pretty impressive since then."  I immediately understood and was both relieved that she had crossed some majorly scary days and that we also did not let her "declare" herself in her first moments.

None of this is to say that intuition is everything.  I've followed my gut and have been wrong, but I have never regretted it.  The only regrets I have had on this journey have been the times that I didn't trust my instinct and that I didn't speak up for myself or for Virginia.

If I could amend my letter to doctors, nurses, sonographers, anesthesiologists, therapists, etc  I would plead with them to not only appease it but also encourage their patients to trust their gut and to listen to that "feeling."  Intuition can be a powerful thing.  Knowledge is power, but it is not derived from statistics alone.

mom confessions

Mom confessions volume 5 (or is it 6... 1st confession- Im too lazy to go back and check).  I apologize in advance, these ones are all over the place.  Kinda like my head these days.

I am SO sick of my kid throwing food.  I know that there are some additional  things I can do to work on this but those things are just as annoying as the food throwing. 

I bought fold over ruffle socks to disguise V's SMOs for those days that I just don't feel like inviting questions or looks.  

I need a date night with my Husband.  It's been at least 4 or 5 months.  

I haven't been to a movie theater in 2 years or a gym in 2 months... thank god for netflix and bootcamp.

Im not ready for summer to end and am scared of the cabin fever that will take over our house this winter.

I am terrified of Ginny going into daycare - biggest fears are her getting RSV or pneumonia and her biting other kids.

I love watching what people pin on pinterest more that I like looking for stuff to pin.   Same reason that I don't hide oversharers on facebook.  

Suprisingly I have SO much more patience with Virginia on the days that I am home with her all day than the few hours that I see her on work days.  

Best Best Best part of my day is the "MAMA!" I get when I walk through the door at night.  It totally makes up for the crocodile tears that I still get every morning.  

Lastly, who needs to go to the zoo when you have a petco down the street?

Transabdominal Cerclage Q & A

Lately there has been alot of traffic to the blog and questions here (and in real life) regarding the transabdominal cerclage.   Im going to host a little Q & A below to answer the most commonly asked questions.

Prior posts on my TAC experience can be found here and here.

How did you find out about the TAC?

During Bedrest with Virginia.   I had a lot of time to do a lot of research and happened upon it when researching rescue cerclages.  No one was willing to give me a cerclage with Virginia given the late gestation and complete effacement.

Why not go for a TVC (transvaginal cerclage)?

Personally, I just feel that the stakes are too high.  I had rapid cervical changes, major funneling, and aside from some sporadic braxton hicks contractions I had NO idea that anything was happening.  I feel the TAC gives me the best chance to carry to term and the best chance to avoid bedrest.

Who did your procedure?

Dr. George Davis in New Jersey.  He performs hundreds of these each year and placed 9 other TACs the week I had my surgery.  http://www.abbyloopers.org/ is the best resource for looking for other providers and general info regarding the TAC.

Did they operate through your prior incision?

Nope :(   My c-section incision was too low. 

What type of anesthesia did you have?

I was intubated and under general anesthesia.  My understanding is that spinal anesthesia is only used for patients getting their TAC during pregnancy

How was recovery?

I had the open (not laproscopic) TAC and recovery went really well  considering that it was an open abdominal procedure.  I had minimal bleeding and really the focus of my recovery was resting my abdominal muscles.  I was was driving after 10 days, I was able to pick up Virginia towards the end of week 2 and I was up to full workouts by week 5-6 and back to ab exercises 2-3 weeks after that.  

Can you feel the TAC?

Nope.  Early in my recovery I had some twinge like pain that I assume was at or near the TAC but nothing since then.

Will you need IVF for a future pregnancy?

I have actually even been asked this by 2 physicians ... yikes!  No, the TAC is tight enough to prevent dilation but it is not locked and sealed ;)  My doctor indicated there is some evidence of fertility issues in some women after the procedure but it is relatively uncommon.  

Could you still deliver prematurely?

Yes.  I don't plan to though :)  According to Dr. Davis, this procedure essentially takes the cervix out of the picture.  It is a so called "cure" for cervical incompetence.  What it doesn't prevent though is preterm labor or any of the other possible reasons for a premature birth.  We feel confident that we have eliminated my largest risk factor.  I will be followed very closely and cautiously for preterm labor, especially considering that I had a classical (vertical) c-section which increases the risk for uterine rupture.  

Will you have to have another c-section?

Yes, but I would need one anyways due to my previous classical incision.  The TAC stays in place and is not intended to be removed.

Any other questions?  Feel free to comment and Ill answer them there :)

taking the plunge...

into daycare.

I have known for a while that this is the direction that we were headed but there were a lot of factors and quite a few things to figure out to get to this point.  I know the childcare hunt is among the most stressful things about having a dual working family, but the added factors of prematurity really takes things to a whole new level.  

I have made endless pro + con lists over the past few months while debating between a new Nanny and a daycare center.  There were very real advantages (and disadvantages.. but Im trying to be positive here) to both situations and at the end of the day we are just following our gut and making the best decision we know how to make right now.  I am comforted knowing that it is not a forever decision and if it is not working out for any reason (most likely from a medical perspective) that we will change course.  

I also made lists of the must haves and the nice to haves in a daycare center.  

must haves:

small program - no more than 35 kids in the facility as to reduce the amount of potential germ carriers.

clean facility & documented cleaning routines 

documented and enforced sickness policy for children and workers

experience working with early intervention

play based program 

nice to haves:

close to home

flexible week options

willing to use cloth diapers

has an established pre-school program for 3 & 4 year olds

The program we have found fits all of our must haves and most of our nice to haves.  It just opened about 7 months ago and currently has 9 children enrolled (out of 23 max).  At first I was turned off by this and then came to realize that this was probably a really good thing.  We think it offers the right balance for us.  

Only time will tell.

While on the daycare search I was quite honestly shocked by some of the responses I got when I started to talk about Virginia's needs and basic medical history.  I felt it was prudent to share this information to get a real understanding of what their policies and procedures were for everything from sickness to classroom dynamic.  I should have known better, but I was pretty shocked at how many directors/representatives seemed very uncomfortable with the prospect of caring for a child with different needs.  To be honest I really just immediately wrote them off and didn't care to explain that while we have concerns about her entering daycare,  her day to day needs are really not a whole lot different than any other child.  I didn't waste a breath to let them know how resilient, smart, curious and amazing she is.  This is a place where I am not interested in teaching moments.  

Their loss, not ours.  I mean seriously.. look at this nugget ;)

Adventures in SMOs and hiking with Virginia

Virginia has been walking for about 2.5 months now.  As long time readers around here know, it was a long process (relatively) to get her to truly be walking.  She cruised around furniture for about 4 months.  She took a few steps here and there for about 2 months. And then she spent a few weeks figuring out how to get to her feet independently and without the help of furniture.  This happened to coincide with the start of summer.  Her hesitation to crawl or fall on the pavement and grass outside was very influential on her speedy progression at that point.  In the past 2.5 months she has been doing SO WELL.  Seriously, not just her walking but her speech and general maturity has really blossomed since she truly became mobile.   She has certainly gotten steadier and more confident since June, but her gait is still a bit immature.  She tends to kick her feet out in front of her and turn her feet out to steady herself.  Enter stage left... SMO braces (supramalleor orthotic).  It is basically a thin molded plastic brace that goes under and around her foot and ends at the top of her ankle (you can see the blue brace peeking out of the top of her shoes in the photo above) .  It is held in place by 2 velcro straps that keep them snug to provide the most stability for her foot and ankle,  Our particular braces are made by cascade dafo (jumpstart leapfrog line).   We are hopeful that this added support will help improve her gait and keep her steady as she picks up her pace ;) 

photo via cascade dafo

This particular SMO is not a custom product and my Mom (a pediatric PT) happened to have a sample pair in Virginia's size.  It is a good starting point for us and an easy way to determine if this style orthotic is going to be helpful for her.  We were planning on starting the insurance process for custom fit SMOs in September, but we are now going to wait to see how she does in these first.   

It was a bit of a challenge to find a shoe that would work with the brace without adding too much length to her foot.  Luckily my Mom is a pro at this and went to 5 different shoe stores with us before we found something that worked really well.  For those of you that will be doing similar shopping:  be sure to look for shoes that open really wide down to the toe box and take out the insoles prior to trying them on.  A shoe that comes in a wide width is also helpful in fitting the orthotic without adding additional length.  

So far I don't notice much difference.  It has only been a week since she started wearing them though.  And no, I'm not known for my patience.  

After several days of testing out the SMOs at home for a few hours at a time we ventured out for a hike at our local Audubon Society nature center.  She spent the first half  of the hike in the ergo begging for water out and pulling on my hair ... needless to say she got a lot of practice walking around in the SMOs and her new kicks on the second half of the hike.  

Looking for info on AFOs or custom braces?  Tatum at Ain't No Rollercoaster wrote a super informative post on that a few months ago  http://aintnorollercoaster.com/first-day-with-ankle-foot-orthotics-afos/

life altering decisions

http://www.nytimes.com/2013/08/05/opinion/end-of-life-at-birth.html?_r=0

This Op-Ed and the related comments breaks my heart into a million pieces.  The article discusses the resuscitation and end of life decisions surrounding the birth of premature babies, particularly those born between 23 weeks and 26 weeks.   It highlights the concern that parents of extremely preterm babies are ill-informed prior to birth and during the very seriously critical days that many micropreemies that survive the delivery room encounter.  It suggests that in some cases both parents aren't informed and/or both given the opportunity to have the proper decision making power in their child's care.

What breaks my heart into a million pieces is that these decisions are so painful and can be so circumstantial and are absolutely life altering.  The decisions are a product of the situation and influenced by those delivering the statistics.  Typically the events surrounding the birth of a baby late in the 2nd trimester happen incredibly quickly, leaving parents precious little time to understand the unimaginable world in front of them.  I suspect the haste nature of the events forces many to make decisions based on emotion alone.  There is room for an enormous amount of guilt and regret no matter the decision that a parent makes in this situation, but no on can understand being in the position to make a decision until they themselves have been there.

I was "lucky" enough to be on bedrest for nearly a month before Virginia's arrival.  Unlike many parents facing a similar mountain, we had the time to research, the time to talk with neonatologists, the time to pray, the time to think, and the time to discuss.  I had the additional benefit of growing up under the wing of a Pediatric Physical Therapist (my mother) and had a better understanding than most of what the endless list of complications that the neonatologists referred to actually looked like... in real life.  I also had done some research on the topic in college.  Yet, none of this made any decision we made during those pre-viable days any easier;  more informed but no easier.

I believe that there are no right answers here.  Discussions like this this help bring everyone to the table and help raise more awareness.

thoughts?

edited to add:  After reading more of the comments on the article,  I am left angry and realizing how much more awareness is needed on this issue.  I stand by my statement above that there are no right answers while in this situation but I also know what my 19 year old self wrote in that college paper (linked above).... "Social attitudes towards the impending disabilities of the premature infant are even more limiting than the actual physical impairments. People with disabilities themselves testify that their disability doesn’t often preclude them from enjoying a good quality life."    Statistics are just statistics.  They are guidelines for parents and caregivers to make decisions but they do not determine the outcome.  

dancing queen

this one will certainly be on a wedding slideshow some day....